Monday, August 16, 2004 4:03 PM CDT

Isn’t it disappointing and/or annoying to check this site day after day and find the same old posting?

I’ve been holding off until I had the all the info I need to share a complete story. I still don’t have it, so I thought I’d at least brief you on what I’m waiting for.

I had a brain MRI last Wednesday. I unsuccessfully tried to track down results Thursday afternoon. (The results not being available and my doctor being on vacation made this a challenge.)

On Friday morning my phone rang at an hour that wouldn’t be too early by most people’s standards, but early enough for me that I knew I wouldn’t remember the call later. Since the caller ID didn’t show a recognizable number, a company or a person’s name, I ignored it. It turned out to be a doctor responding to my query for the brain MRI results: “Good news!” his message said . “There’s been improvement. The spots have decreased, there are no new areas of metastases, and the edema [swelling] has decreased.”

I had a lot of follow-up questions, but since I was going in to have my blood drawn on Friday afternoon I figured I would get answers then. At the clinic, chemo nurse Trisha offered to print out the MRI report for me. Rather than answering any of my questions, the report gave me many more. (Maybe that's why many patients don't ask to see them.) It didn’t read nearly as cheerily as the phone message sounded. The overall report on all of the brain lesions was “slight decrease.” The doctor’s phone message didn’t use the word “slight.”

So, how good is this news? Will they continue to decrease? (The recent appearance of burns in, on, and behind my ears leads me to believe that the answer to that question is “yes” which I would definitely consider good.) Or, is this is as good as the news gets? What are the odds are of them staying “decreased” permanently? Or should I expect an eventual “increase?” (I know...he won't know the answer to that, but that doesn't prevent me from asking.) If they increase sooner rather than later, are there other treatments available?

Unfortunately the only doctor in the clinic on Friday was in a “private consultation” and the radiology dept. had gone home for the weekend. I thought today I’d get to talk with my doctor, but he isn’t in today either. So, I am patiently waiting until tomorrow when I can find out if “slight decrease” is really good news, or if this “good news” could still turn into “even better news.” It is definitely better news than “no change” or “increase” but I’m still not sure it's as celebratory as the doctor’s earlier phone message would indicate. And the longer I wait to talk to someone about it, the longer my question list gets.

Brain radiation was, and continues to be, no walk in the park. But once the MRI results are better explained and my questions are answered (to my liking, of course) I might be willing to consider it a limp through the jungle.

Friday, August 6, 2004 7:34 PM CDT

My fellow Americans, it’s a new day in America. I have flip-flopped around the corner and found myself back in the exhilarating world of chemotherapy. It is so good to be in America where chemotherapy is available for every well-insured citizen with access to good health care. Sure, some people are uninsured, uninsurable, or simply can’t afford it, but who cares? This is all about ME! And ME was reveling in the lovely sounds and smells of toxic substances coursing through my veins, hungrily gobbling up the cancer cells that have been ignored for the past five weeks. If I had enough strength to be invigorated, I surely would be. It feels so great to have it in me again. Then again, it might have been the Davanni’s hoagie and garlic/parmesan chips my nurse brought me. Another great American custom to be thankful for: The drug companies that ply doctors and nurses with lunches on a regular basis. God bless America.

If I know my readers, the only thing you actually absorbed in the previous paragraph were the words “I,” “feel,” and “great.” The words don’t even have to be in that order or concurrent, because your brains will put them in that order anyway. Or you mistranslated “it feels great,” and immediately mistook my positive attitude for a…well, for a positive attitude. I don’t mean literally that I feel great. I don’t feel great. At all. I’m still tired. I’m still weak. I often feel like I’m lumbering from here to there in a daze, though I haven’t toppled over since the knee fiasco. As of today, I’m off Decadron, the steroid, so I’m hopeful that a lot of my complaints will ease up, including my puffy face. I still get Decadron via IV with my chemo pre-meds, so I’ll always have a few days of its affects every two weeks, but the only affect of the IV stuff is usually insomnia.

I learned something new today, which is good, because I was really getting tired of knowing everything. Dr. Menge (who I saw while Dr. W. is at Disneyworld) asked me how well-stocked I was with anti-nausea drugs. I replied that I had no idea what was on my shelves since I haven’t been nauseous on this chemo regimen. It seems that, even though my chemo hasn’t changed, this might not remain the case. He explained that often people who didn’t have previous problems with nausea, do have problems with it after brain radiation. If I were using my “good, bad and ugly” posting format, this would definitely fall under “bad.” If it actually happens, it will be classified “ugly.” It would also put a crimp in that eating frenzy I have going on.

Today I had the whole “spa” treatment: Blood draw, doctor visit, pre-meds, Carboplatin, Taxol, Zometa (for bone strength), a Sandostatin shot (for stomach strength), and lunch. I was at the clinic from 10:30 until almost 4. And I managed to leave the house in time to drop Mudd at the animal hospital for de-pooping, shaving, squeezing/juicing, and boarding until I could pick him up again. My "early afternoon" cat pick-up ended up being 5ish. My own treatments today totaled about $10,000. Mudd’s was only $28.65. Heck, I would’ve been willing to pay at least $100 for it. He whined all the way there, the whole time he was there, and all the way home, but as I think more about it, his day was worse.

Last night I heeded some advice we often hear but rarely follow: I ate dessert first. I finally found frozen custard in the Minneapolis city limits. Until now one had to travel to the extreme outer regions of Twincityville to find it, but thanks to Marna’s mother-in-law’s boyfriend’s daughter (go ahead Marna, correct me, I’m sure I got this wrong) there is now frozen custard just off 35W at 54th and Nicollet. I stopped on my way back from a visit to the Komen office (note to self: No more volunteer work that involves alphabetizing), then I went home and ate dinner.

Eating dessert first turns out to be a very good idea. Maybe that’s just the case for people like me who have separate dessert and main course stomachs, but that’s another posting. This is my ad for Liberty Custard. I talked to the owner last night and she said, “be sure to tell all your friends,” so I am. Get thee to Liberty Custard NOW. I need this business to succeed. My body relies on frozen custard to subsist. I’m pretty sure yours does too.

Saturday, July 31, 2004 11:11 AM CDT

Old business Shelly Christensen, Shelly Christensen, Shelly Christensen.

The latest good Becoming a member of the Tiara Club, their hilarious event, my Spalon Montage pedicure, the meeting of the extremely small book club, and the Convention Grill, Liberty Custard, and a ride in a red convertible with Mary H.

The latest bad I’m still feeling tired, energy-depleted, weak and crabby. On Friday I’m meeting with a doctor I’ve never met. It seems like after all this brain radiation, I should see someone who knows if I’m my normal self or not. If I fall flat on my knees, I’m my normal self. If I forget to ask my usual plethora of questions, I’m definitely not. I hope Dr. W. apprises him. Did I mention that I can’t see clearly?

The latest ugly My cats keep following me around, staring at me, and are making me very nervous. I feel like they might know something I don’t. Then again, it might be the food I’m constantly eating.

Sunday Phantom of the Opera with Kristi. I’m definitely in the mood for some musical theater. Way more fun than my own drama. Though it does give me the idea to turn my story into a musical. Still working on the title. Cancerlot? Tumortown? Breast Side Story? Yes, I do quack myself up.

I took a picture of my blistered, wounded — and very shiny — head (only viewable from the back) and sent it to Marna. I’m always willing to gross out a sister, whether she likes it or not. Mary thinks I should post it in the photo album, but I’m holding back. (Which is definitely a sign I may not be my normal self.) If there are any sick but curious individuals out there, make yourselves known and I’ll share. Now I shall sit back and see if this number is higher or lower than the number of people willing to attach my toilet seat.

Wednesday, July 28, 2004 11:23 PM CDT

I can tell you’re falling behind in your reading, people! If you missed Tuesday's posting, or simply opt not to feel guilty about it, you're in trouble either way.

Wednesday's good The Olive Garden and Dairy Queen with Jane B. And the new toilet seat in my guest bath, which Jane can tell you was more complicated than either of us anticipated. The “no tools needed” printed on the box was definitely not true. It actually required a hacksaw. Really.

Wednesday's bad Waiters were NOT at my Service. Thought I’d try and use more of my “Waiters at Your Service“ gift certificates. Ordered the Famous Dave’s “Feast for Two”…then decided to invite Jane to have some since she was in the neighborhood. I received confirmation of my Web order via email on Tuesday night, but they were a no show. And how’s this for “at your service?” I requested delivery at 7:15 but patiently waited until 7:45 to call; they close at 7:30. How convenient that a place that delivers dinner closes during dinner hour so they don’t actually have to field phone calls from irate customers. (The service really caters to the group business lunch crowd and l’il ol me ordering dinners for one or two is not their target market…but I still reserve the right to whine, because it’s what I do.) I showed them though: I faxed them (fax — the place encourages faxed orders — what year is this?) and emailed them. But what I’m most mad about is my expectation that they won’t care less about it. It’s enough to make my head blister.

Wednesday's ugly I thought aloe vera was supposed to be natural, soothing, and gentle. That stuff stings, man! My head is not my happy place at the moment. Yesterday I decided it was a good time to replace my 10-year-old 2 oz. tube of aloe vera; of course the only stuff Target had came in a 10 gallon jug, which should take me several life times to use up. The bottle lists some of its other uses. One is hair gel. Hilarious.

Tuesday, July 27, 2004 11:24 PM CDT

Rarely do I use this site to induce guilt trips. I use the term “rarely” when I could use the term “never,” but I’ll allow for the fact that inadvertently someone has felt guilty under their own power. But now I feel forced to purposely bring about guilt to able-bodied readers (including their partners and spouses) within a 15 mile radius. Aside from pounding on you when you fail to memorize each and every posting, I don’t ask for much. Sure, I yell at you periodically, crab about things fairly often and rant and rave on a regular basis. But never do I consciously try to make you feel badly. Well no more Ms. Nice Guy, er…Ms. Too Tired to be Nice, But Means Well Guy.”

Two days ago I actually put forth a plea for help attaching my new toilet seat. I am sorry to report that of all my local readers (I know you’re out there. I see the CaringBridge visitor number, and I’m only responsible for about 4,611 of those visits) only ONE person acknowledged my request and offered to help. One person. One. Person. And yes, I will embarrass her by printing her name: Jane Baxter. To assure that I always embarrass her, I like to refer to her as “Eleven Who Care Award Winner Jane Baxter,” but it's clear now that only Eleven Who Care Award winners come to my rescue on request. I understand that there are circumstances that do not allow you to continually be at my beck and call, but I thought that a request for help to almost 100 people MIGHT garner a slightly higher response rate. It’s not like I said “come pronto, toilet seat emergency!” It wasn’t. So perhaps 48+ hours later I’m over-reacting, and you might still be planning to respond. Too late people. Now go ahead and feel guilty. I demand it.

Today’s good Spiderman 2 with David E. I could really relate to Peter Parker. He had a really bad couple of weeks. I felt like we were living parallel lives.

Today’s bad Last week I visited our new Ikea store. Today, in an effort to compare and contrast, I tried to visit our new Tiffany & Co. Unfortunately it hasn’t opened yet. I made it out of Ikea for $21.75. Not sure that’s gonna work at Tiffany’s, so this might be better classified under “good.”

Today’s ugly Not a thing aside from the tongue-lashing I was forced to give.

More good Marna’s chopped liver. I’m headed to it right now to drown my sorrow over the whole toilet seat fiasco.

Tuesday, July 27, 2004 1:45 AM CDT

The good Dinner at "Mission" with Sue and Pat. Fun time and great food.

The bad Knees still hurt. Painful head wounds from ripping off scalp should take awhile to heal with low blood counts.

The ugly To add insult and injury to injury, here's something the radiation folk didn't tell me: Today, almost a week after radiation treatments ended, my head started blistering. A few inches above the aforementioned descalping. This brings me to my fifth "ouch"-related utterance in the last three days.

More good Even if I could figure out how to do it, I promise not to post any photos of my ugly, battered bald head. But know it's there.

Sunday, July 25, 2004 5:27 PM CDT

Have I yet found the right words to describe exactly how weak I am? Today’s big adventure was to Home Depot to buy a new toilet seat. I came home knowing full well that putting it on was not going to be the simple project it should’ve been. (To any handier-than-I-currently-am-people reading this, my new toilet seat awaits you.) I was on the bathroom floor when I realized I was going to need some kind of tool to remove the old seat. Rather than standing up, I slid on my butt to the closet to retrieve my tool box. Much, much easier. I have to think really, really hard whether any project is worth going all the way down to the floor for. As the days go by, there are fewer and fewer.

I took a picture using the self-timer earlier, but made the mistake of pushing the shutter button while sitting on the floor. I was at least five minutes away from getting in the picture. The picture — posted second in this site's photo album — is intended to show my new short do, my bruised knees, and the cute slides that can no longer be worn for trips longer than a few feet. It also shows my steroid-puffed, food-stuffed face, but ignore that. This time I was just physically unable to get the camera at an angle that would make me look thinner. My knees still hurt too. Wah.

Though the shoes were to blame for my last unintended trip to the floor, perhaps I could wear them on my other periodic trips to the floor. At least my feet will look cute while I’m lying there figuring out how and when to stand up again.

Another lesson learned (#4,611): If one’s head is a little raw and sensitive from brain radiation treatments, it’s not a good idea to rip off one’s glued-on wig with wild abandon. All I can say is “youch.” I guess I can also say that I actually ripped off skin.

After running today’s errands, the newer short do has already lost its thrill. It was still hot and sticky and I couldn’t wait to get home a very gently peel it off my head.

Whine. Whine. Whine. What’s something NOT to whine about? Ah…last night’s Aquatennial fireworks, “The Big Ooh Aah,” viewed from my balcony. Spectacular. The consensus was that these were the best fireworks display my guests and I had ever seen.

Oh, something else not to whine about. Well, there’s a little whine at the start, but a happy ending follows. My latest “life is too short to…” is “life is too short to NOT subscribe to the Sunday New York Times if you really want it.” My subscription was supposed to start last Sunday. I called downstairs bright and early to see when/how it would arrive; Bob at the security desk said it’s usually there by 7, but it hadn’t shown up. (Happily this gave me a chance to call and yell at the NY Times instead of one of you.) This week I called downstairs again, and Bob gave me the same answer. You can only imagine how well I took it THIS week. Yet, I didn’t rush for the phone to bawl out the Times rep. And when I went to my door to retrieve my Star Tribune, the New York Times was by its side. At my door! I don’t even have to get dressed and bandanaed and go downstairs to retrieve it. How cool is that? Or am I just easily amused these days?

I have a feeling I may have forgotten to whine about something. Once again, you’re welcome.

Saturday, July 24, 2004 3:44 PM CDT

Another steroid side-effect I may have forgotten to whine about. Or forgotten if I’ve already whined about it. Cramps: Hand cramps, leg cramps, feet cramps, probably the jaw cramps too. I’ve been lying awake or awoken with leg cramps at least three times over the past few weeks. Three words: ow, ow, ow. Having one right now too. Worth a fourth “ow.”

More whining: I was awake all last night as well. Despite downing my maximum dosage of sleeping pills (a coupla bottles of Triazolam, with a whiskey chaser) I was awake for the next three hours. They say that you’re not supposed to have a TV in the bedroom, but usually the TV is what lulls me to sleep the best. I read for two straight hours, then finally dozed off during the TV-watching portion of the morning, but soon woke up in pain. This time not leg cramps. This time it was a throbbing, aching pain in both knees from yesterday’s fall. They still hurt. I wonder if a doctor would appreciate a call in the middle of the night: “Well, I fell yesterday, scraped and bruised both knees and they really, really hurt. “ At some point between moans I must’ve reached for the Extra Strength Tylenol I keep next to the bed, because there was no lid on it, but I don’t think any made it to my mouth until after daybreak.

Missing: Mysteriously lost a perfectly good paragraph from yesterday’s posting. It said something about finally emerging from my radiation coma on Thursday and discovering a world outside of my living room and medical locales. On Thursday, the loveliest of summer days ever, (now tied with Friday) I found myself at the Nicollet Mall Farmer’ Market. A glorious day with bounties of food spread out before me. I was flying high to be out and about, on two feet, wandering the mall, gazing at fruit and vegetables. To quote Vik: There’s something life-affirming about a farmers’ market. To quote Dale: Look at all this FOOD!

On Friday I went back out into the real world again. I had lunch with college friend Tom who was in town on business. I’m kinda surprised he still remembers me since he seems to have experienced several black outs through much of his college career. I snarfed down a big ‘ol burger and a couple of desserts, and gave Tom a few fork stab wounds if he got too close to any food I wanted. Since I was in the neighborhood, I had to go to Candyland for Chicago Mix (if you haven’t met yet, you really should). Then I finally remembered a Marshall Field’s gift card burning a hole in my wallet (which I’ve failed to remember on 162 previous trips to Marshall Field’s, including Thursday) and forced myself back into MF to rid myself of it ASAP. Believe it not I didn’t buy food. I bought knives. To keep people away from my food. Thank goodness that pressure is off. But then the stress was back. I went to Office Depot and mulled over mechanical pencils for a half hour.

But at least I didn’t fall over in public. Good thing. People downtown would just step over me, not run for ice packs. By the time I was headed home from Friday’s excursion, I wasn’t quite as perky as yesterday. Buoyed by Thursday’s fun at the farmers’ market and the hair cut, I may have jumped back into real life a little too quickly. Last night rated unbelievably high on the fatigue-o-meter. And now it looks like I’m going to have to set up a knee-o-meter next to it. I’ve got to learn to pace myself. But there’s much to be said for being out, about, fully upright, and able to walk without falling over. Don’t take it for granted.

Friday, July 23, 2004 11:02 AM CDT

Here’s something you might need to know/want to know/like to know/not care the least about: I’ve been making daily postings. And I don’t send emails about them.

Next in my line of miraculous events: I made it to my blood draw/doctor's appointment this morning by 8:15. (The appt. was actually at 8:10, so it's five minutes less miraculous than it could've been.) I took copious notes, fully aware that I don’t remember what I do early in the a.m.

The part I don't have to rely on notes for was the part when I fell down in the treatment room, skinned both my knees and needed two nurses to help me up. Personally I think the problem was my shoes. My feet are not made for slides, no matter how darn cute they are. The nurse brought me an ice pack while I waited for the doctor, but I think I can live scraped and bruised. I'm supposed to be sitting here with ice packs on my knees, but I'm sacrificing beautiful knees to keep YOU up-to-date. My entire body is full of bruises, which I just learned is indicative of my extremely low platelet count.

This low count is the first of two things that stood in the way of jumping right back into chemo. Dr. W. said it's also a timing issue. If you start too soon there is danger of damage to brain cells (okay Tom, this is where you say, "Hey, that’s just like me in college”), risk of swelling and/or bleeding in the brain, and cognitive functioning effects. I think we all know that not being funnitive cogenting is very important to me. So between the blood counts and the dangers of chemo (with my particular drug combo) this close to radiation, there are too many possible complications to start back on chemo right away.

I go back in two weeks, and can hopefully start then. Dr. W. promised to be liberal with my platelet counts; we are both in agreement that we want me back on chemo ASAP. Neither he nor either nurse practitioner are available the day I go back (Fri., Aug. 6) so I'm going to see the new oncologist on staff. I always love to inspect the new doctors.

Got my Decadron dose reduced again. Yee haw. Also looked for more justification for my inability to muster up muscle strength in my legs. Dr. W. confirmed that Decadron has a huge affect on large muscles (no, they don’t necessarily have to be well-developed ones) like the thighs and across the shoulders. So I repeat: I am not a feeble, weak old lady, I am not a feeble, weak old lady, I am not a feeble weak old lady. Yet.

Some good news in the blood test report. My liver function is at AST 80, down from 130 on June 23. No, I have absolutely no idea what that means either, but I wrote it down, so it must be really, really important. Then again, I also wrote down "won't remember this appointment."

Went in for my wig fluff & buff yesterday. I also had it cut shorter. I almost felt like a REAL salon customer, which I really miss being. I finally tracked down my “wig guy,” Kit, in a skyway salon near Marshall-Fields. He actually straps the wig under my chin and does his thing; it was so fun to leave with a new hair-do. We also ordered another wig. I like the color and curl of the one I have, so I ordered another of the same, which Kit will restyle on arrival. We had a big discussion about buying a “custom wig” and other options, but custom wigs are all human hair and require styling, and are hugely expensive (thousands of dollars); I know I’ve said this before: The ONLY good thing about not having hair, is not having to fuss with hair, so I am definitely not going the expensive, custom route. We decided that my current wig-wear was serving my hair needs adequately.

I have lost almost every last hair on my head over the last three days from the full brain radiation. The "Managing Hair Loss During Cancer Treatments” brochure that Park Nicollet hands out says: “It may take a long time for hair to grow back after radiation treatment.” Since every single radiation employee I’ve ever talked to has told me that it NEVER grows back ever, I quizzed Nurse Jeanne this morning on the wording of this; she admitted that they decided to leave room for hope in that particular sentence. Hope, huh? In that case, my hope is that Hugh Jackman will show up singing and dancing on my door step.

Thursday, July 22, 2004 9:35 AM CDT

Lookie here. 9 :46 AM. Dressed. Went ALL THE WAY downstairs to the Bean Counter for a latte and coffee beans. I don't think I've seen that place during working hours for two years.

Friends from Komen are coming by this morning at 10:30 with berries and pastry. Then it's off to see my "wig guy" at noon to see if I need a fluff/buff of the existing topper and perhaps a standby wig. Then it's on to the Nicollet Mall Farmer's market where I can load up on all kinds of food that will soon be rotting in my fridge.

Yesterday I took a full day of rest. No make-up, no hair, no nothing. Just layed around and helped my little pieces of fuzz land in a waste basket (sorry, no ravioli afterall). I felt like a big slug all day. I think the getting up, dressed, made-up and wigged thing works better. Once I'm weaned off the Decradron (steroid) I will probably revert back to my old not-at-all-bright-eyed and bushy-tailed self in the morning. (Actually, if I'm not being too personal, that would be bald-tailed.)

Wednesday, July 21, 2004 9:02 AM CDT

Little hairs jumping ship right and left. Amost completely bald again...now and forever.

Benefit to my new early rising schedule: I can squeeze in an extra meal or two!

Woke up at 7:30 this morning in the exact same position I was in at 3 AM. Bedside light on, bed raised, glasses on, television on. It seems I'm not getting quantity or quality sleep. I think today is a nap day.

Yesterday afternoon I read yesterday morning's posting. It was all news to me. I don't remember writing it. I can't remember anything that happens to me before noon. So it looks like I'm in for another surprise later today. Is life fun or what?

Tuesday, July 20, 2004 9:23 AM CDT

Brain radiation: Day 14. Last day.

I think the brain feels appropriately fried. I'm perky by day, zapped and sapped by night.

Also, in the timely way that only hair can have, as of this morning all my little bits of hair-like fuzz are separating themselves from my head. It'll be good to have an obsession to add to (not replace with) my constant food cravings. Fuzz gathering. Not enough for a pillow, but perhaps I can combine it with my food joy and stuff it in ravioli. I am pretty sure I am one of very few people who buys herself presents from the Harry & David catalog. This time: Pound cake, peaches and raspberry sauce. I hope I don't hurt the mailman when I attack upon delivery, Then, to make sure I get my money's worth on the new blender, I may blend it into one big raspberry, peach, pound cake smoothie.

Went on Sherklock Holmesian task of finding my "wig guy." I think the wig may need a "fluff and buff" but I also may want to have another on stand by, since it's unlikely I will ever grow hair again. After a series of five calls (one salon to another salon, etc.) I found him! Have an appointment on Thursday.

These steroid pills (the dose of which gets reduced weekly) make me not only ravenously hungry, but unbelievably weak. Getting up from my couch is akin to a 99-year-old trying to rise from a bean bag chair. But every day out to radiation means a new food field trip! I also now own ever single food magazine in the Byerly's check out lane.

Monday, July 19, 2004 1:14 PM CDT

A spur of the moment trip to Mystic Lake Buffet is always a good idea.

Thursday, July 15, 2004 8:03 PM CDT

Life is too short to not own a good blender.

Thursday, July 8, 2004 11:52 PM CDT

Dkjf kkd ghh eichi ch iv,mdi dkodg idik z kdfaing dif! See? Not a single brain radiation side effect!

I wasn’t planning to update, but I found myself in the midst of radiation equipment malfunction today and had plenty of time to lie around and consider what an update would say. Sorry ‘bout that.

I have radiation therapy every day, except weekends and holidays, when it seems that cancer knows to go on vacation. Today was my sixth treatment. So far it has left me tired, cranky, clumsy, hungry, more easily annoyed than usual, weak, lazy, withdrawn, tired, cranky, mean, intolerable, disinterested in pretty much anything that I can’t eat, unbelievably impatient, and given me a bad case of “steroid stomach” [repeat list 32 times]. And this experience has made it quite evident that I carry much of my tension in my face, because my jaw cramps have returned with a vengeance. (Sitting at this keyboard I’ve gotten so exasperated when I push the wrong keys that I’ve lost count of the number of times I’ve almost pulverized my keyboard in frustration. And just now I almost clipped the cat who had the nerve to walk by me and sneeze. I’m clearly a walking time bomb.)

Last week I had three treatments in a row before the holiday break and this week will give me four treatments in a row. Next week I should get a whole five treatments in a row which tells me one thing…my complaints above are likely to get worse before they get better. Be afraid. Though I sense that warning may have already been received by you.

Today at radiation they were having equipment problems and were running late. I finally got in for my 2:40 appointment at 3:20. As per routine, my head was encased in my mask and I was clamped to the table. The techs left the room and I heard the familiar buzzing of the machine aligning, but that fond, warm, familiar “zap” of the radiation never came. Soon the techs tromped back in, told me to hold on a couple of minutes until the physicist arrived to repair it. “A couple of minutes” turned into 10 as I laid quietly…which I had no choice but to do because the tight mask prevents me from moving my head or mouth. They finally came back in, took pity on me and released me from the mask. “We don’t want you to look like a waffle,” one said, which is a pretty accurate picture of the design on my face after a few minutes in the mask. (I had actually thought it was more of a “super-hero” look, but given my recent unappeasable hunger, the waffle analogy is more appropriate.)

After I spent another 10 minutes lolling on the comfy table, they came back again and ushered me back out to the waiting room. They said that once the machine was fixed they’d squeeze in another patient and then bring me back. I was rather grateful not to be the first patient to test the repair. So a mere hour after I arrived for my two minute treatment I was back to my extremely strict schedule that includes lying on the couch, planning what I’m going to eat next, eating, planning what I’m going to eat after that, watching Jeopardy, eating, planning what I’m going to eat for the next nine hours, and plotting out what big “field trip” I’m going to go on when I go to radiation. (It always involves food.) I can’t even begin to explain how I annoyed I am when this routine gets interrupted.

Most asked question: Do I need rides? No thank you. I vow to put a call out for rides if I honestly believe that I am not capable of driving myself. Some of you continue to bring up the story of how I almost crashed in the Methodist parking lot as an indication that I shouldn’t be behind the wheel, but in my defense I wasn’t aware that there was anything wrong with my brain until that incident. Now that I know (and happen to be in treatment for it) I am a bit more attuned and careful. It might make you feel better to know that my radiation oncologist asked me about driving on Tuesday and during each visit puts me through walking and balance maneuvers that I’ll bet Billy Joel never had to go through.

Other most asked question: Every day. I have radiation treatments every day (not including weekends and holidays) for 15 treatments. They’re scheduled to end on Tues., July 20. They do not do radiation and chemo at the same time, so chemo is currently suspended. I see my oncologist again on the 23rd when I assume we will discuss when to resume chemotherapy. And I’m sure I can find plenty of other material with which to fill up my appointment time, or at least engage in some really good gibberish.

After watching the Tony Awards, I became interested in one of the musicals featured, “Avenue Q.” I received the CD in the mail today – though I have no recollection that I ordered it, that probably has more to do with my Internet addiction than brain tumors – and am enjoying it. My favorite songs from the ones I’ve listened to so far: “It sucks to be me.”

I’ve been pretty disinterested in everything these days except eating and any process that leads to eating. (Yet I’ve lost 10 pounds over the past couple of weeks, which gives me carte blanche to be over-the-top, out-of-control, and guilt-free.) Tonight I found myself avidly drooling through my somewhat large cookbook collection. Now I’ve either lugged out or am planning to lug out every appliance I own. Earlier this week my George Foreman Grill saw the light of day for the first time in awhile. Tonight the bread machine inched its way to my counter, and tomorrow: BIG PLANS for the electric frying pan.

Tuesday, June 29, 2004 11:57 PM CDT

[Yawn, scritch, groan, try to think up an interesting opening…] I’ve done the “I have good news and bad news” thing already. Then there’s the always popular “Did you know that…?” The “Happy birthday to me” shtick works, but it helps to actually use it near my birthday. Maybe this time I’ll skip clever (if I ever really am) and just come right out with the latest:

Last Wednesday’s brain MRI did not show good news. There was some growth to a couple of the tumors, plus a new one. They’re still not large (that’s me, always trying to find a bright side for my faithful readers), which is why I can still type letters in somewhat the correct odrer, but my motor skills have been a bit off. Though I constantly have real and imagined head twinges, I didn’t start tuning into my growing clumsiness until after last week. My friend Judy took me to the MRI; afterwards we went out to dinner (because I’m always more fun to be around when I’m doped up on Atavan) and as we were walking I was laughing at the fact that my body kept listing to the right. I couldn’t walk straight. The next day I noticed as I was leaving the hospital after chemo that I was continually tripping over my right foot. Not hours and minutes apart, but seconds apart. I’d trip, then trip again, and again, and again. I kept glaring at my shoe, trying to figure out why it had turned against me.

I realized this was more than a footwear malfunction when, in the parking lot, I barely missed a collision with another car because my brain told my foot to slam on the brakes but my foot didn’t cooperate. But I don’t let a little thing like the ability to operate my brakes affect ME…it was on to the mall. At the mall my cell phone rang; it was John, the triage nurse at the clinic, calling to tell me that the doctor didn’t have the MRI results yet, but was trying to get them. I took the opportunity to tell John about my newly-discovered foot problem. When we hung up, I went back to trying to remember where I’d parked my car. I eyed the stairs next to me and debated whether it would be safer to take the stairs or walk all the way back across the mall to the escalator. I decided the stairs looked easier, started up them, and promptly fell up the steps when my right foot once again refused to cooperate. (If I wanted you to know how really out of it I am, this is where I’d point out that after all this it turned out that my car was on the lower level and I didn’t require the stairs OR the escalator.)

I wasn’t overly shocked — simply disappointed and nervous — when my oncologist called me Friday morning with the news. Dr. W. wanted me to see the radiology oncologist ASAP and asked about Monday. I said I was going out of town for the weekend. His reply was "Monday isn't the weekend." Please. What kind of lives to you people have? I convinced him that MY weekend lasted until Tuesday. When the radiology oncology department called with an appointment for 1:00 I got them to move it to 3:00. Which is when MY weekend ends.

So, today I was back visiting my old friends in radiology oncology: I met with Dr. Haselow, who confirmed that my right side was weaker than my left. At least he came to this conclusion a bit faster than I did. Then they sent me to the set-up room where I was laid out, had that warm wet plastic placed on my face to make my mask and on Wednesday (today to most of you) I start three weeks of full brain radiation. Laurie sat in on today’s appointments with me, which was my chance to reaffirm to her that I really do know everything including what the doctors and nurses care about and what they don’t. (i.e. they couldn’t care less whether or not there’s wig glue on my head when they radiate me.)

My last time in radiation therapy was in November. I was three days into brain radiation that was mercifully stopped about the time I reached my “freak out” level. I’m heading into it with a different mindset this time. The fact that my hair loss will be permanent doesn’t seem as tragic when I haven’t had any hair for seven months anyway. I don’t actually remember having hair that can’t be removed and replaced at will.

On Friday I started taking Decadron, a steroid, three times a day to reduce the swelling around the tumors. I get Decadron with my chemo and it is NOT a favorite drug. It causes insomnia. It’s also supposed to increase one’s appetite, but that isn’t a problem yet. But tonight I bought a 100-pack of Zantac to combat its other side effects.

Laurie and I DID get to go “up north. Beaver Bay, MN to be exact. We zipped back to town Tuesday in time for my doctor’s appointment. The long weekend on Lake Superior was lovely. We had some complaints with our accommodations: What they say is a “cottage” we would call a town home. Kitchen supplies were a little skimpy, but coffee filters are for wimps anyway. The living room was furnished to accommodate exactly one person comfortably. You’ll never guess who the one comfortable person was. But Laurie claimed to enjoy the view of the lake in her straight-backed chair at the dining room table where she sat for hours and hours. In my defense, the slippery leather love seat wasn’t all that comfortable either, when I woke long enough from my naps to notice.

I generously gave Laurie the upstairs bedroom with the Jacuzzi tub by the windows that looked out over Lake Superior. We had both silently and separately come to the conclusion that the sound of me going “thunk, thunk, thunk” down the stairs in the middle of the night wasn’t something either of us wanted to deal with.

I’m sure there’s more to share, but I’m in a pre-radiation fog. Not as toxic as my usual chemo fog, but a substantial fog nevertheless. Laurie can leave a guest book entry to fill you in on anything I’ve forgotten. But for now I hear the bathtub and my Sleep Master 3000 calling me. And remember, it is not allowable to point out typos to anyone about to get, or in the midst of, brain radiation.

Tuesday, June 22, 2004 3:25 AM CDT

I feel like a ping pong ball bouncing around a rec room. Ow…I think I just did a bank shot off the ceiling.

Since my last posting I have been scheduled for surgery, unscheduled for surgery, and – as of today – most likely permanently unscheduled for surgery, but I won’t know for absolute sure until Wednesday.

My myelogram was supposed to be Monday followed by surgery this Wednesday. Friday was my pre-op physical, which I failed. Just the blood test part, but in my defense, this wasn’t a routine test so I hadn’t studied for it. This particular test measures the ability of one’s blood to clot. Since it’s common for this test to have abnormal results with blood taken through a port, I then got to have a good old-fashioned needle blood test. Though not as bad as the previous results, it was still above normal, meaning my blood is less likely to clot, so Dr. W. told me he didn’t want me to have either the myelogram or surgery this week.

From that appointment I was sent for more blood tests, some of which had to be sent to the U of M to be analyzed because my clinic can’t. Today I went back again for another blood draw and another visit with Dr. W. who stated that he didn’t think the surgery should take place…ever. Based on the blood test results he feels it’s too risky to undergo any procedures that involve cutting when my blood is under-coagulating. (I made up that word, but Microsoft Word doesn’t seem to know that.)

He also voiced the same concern I had planned to talk to him about: that he wasn’t comfortable delaying my chemo – which has been working – any longer. He thinks, and I wholeheartedly agree, that fighting my cancer is more important than fixing my neck.

Even so, there is still concern that my cervical spine is filled with fluid and blood. Though the fluid was negative for cancer and the MRI and x-rays showed nothing, it doesn’t necessarily mean it’s nothing. Nor does it necessarily mean it’s something. (I hear this a lot, which I guess is better than a definitive “it’s something.")

Dr. W. will be talking to the neurosurgeon about how necessary he feels surgery is. If he says it isn’t vital, then he needs to answer the question of what to do about the fluid build-up. Will I go in for weekly drainings? Perhaps they’ll give me some syringes and have me perform “do-it-yourself” fluid aspirating. If the neurosurgeon thinks surgery is necessary, then actions would need to be taken to reduce the surgical risks. These might include receiving a transfusion and/or platelets. In addition to the clotting deal, though my platelet count isn’t out-of-the-ordinary for a cancer patient, it’s not at a level that a neurosurgeon would want it to be for performing surgery.

I go back on Wednesday for more bloodletting and another visit with Dr. Wilkowske. I certainly can’t say that my oncologist is neglecting me. I’ll have seen him three times in six days by then. By Wednesday he should have talked to Dr. Larkins, the neurosurgeon, and have answers to the surgery and fluid questions. Anticipating that Dr. Larkins will agree that surgery shouldn’t take place, I’m scheduled for chemo on Thursday.

While your brain is still in medical gear, here’s some more information that could be good or could be bad. I’ve noted over the last several months that no matter how terrible my diet and how many hours I spend on the couch, not only am I not gaining weight, I seem to be losing it. I know, you probably haven’t noticed any change to my already waif-like physique, but my lifestyle would indicate a much higher weight than the scale indicates. The not-so-bad possibility: That similar to the way chemo saps ones energy, it takes calories from one’s body. The not-as-good possibility: That darn cancer thing.

Wednesday evening I have the brain MRI that will be compared to the MRI from a month ago. No change or a decrease in the size of the “spots” (a MUCH better word than “lesions” or “tumors”) would be good. Any increases in size or more spots means a visit to the doctor who performs the stereotactic radiation.

I’m almost positive that something fun has happened since I last posted but I can’t think of what it might be. Most of my life the past few weeks has been spent editing a book. This was a volunteer project that has turned out to be a bit more time-consuming than I expected. I’ve also taken an interest in knitting; Kristi came over the Saturday before last to give me a lesson. At one point we were both sitting on my couch quietly knitting and I turned to her and asked “Kristi…how old ARE we?”

I’d better mention that Annette and 2 1/2-year-old Matthew came over Monday evening or Annette might think it didn’t fall under the category of “fun.” Matthew is a pretty funny kid. He was full of the “why’s,” and “what’s” typical of a kid that age. He loudly whacked his head on my coffee table which is also typical of a kid that age. At one point he asked me what I was doing and I told him I was getting our dessert ready. He enthusiastically exclaimed, “I LOVE dessert!” I could tell we were soul mates.

Laurie is coming from L.A. Friday night. If no unforeseen medical events pop up (the odds of which are 50/50), we’re headed up north to a cottage on Lake Superior from Sat. thru Tues. Thursday’s chemo already came up since we started considering this idea. But we still plan to go. If I’m on a chemo low, at least Laurie will have a nice view of the lake while I’m asleep.

The Cliff notes version of what’s ahead: Wednesday afternoon—Doctor’s appointment to get neurosurgeon’s take on my neck problem and hear more about my blood (U of M results weren’t back in time for Monday’s appt.), Wednesday evening: Brain MRI, Thursday – Chemo (probably), Saturday – Beaver Bay or bust!

Today’s quiz question:
Chemo mouth prevents me from partaking in one of my favorite things. What is it?
A. Coffee
B. Pine trees (many parts are edible!)
C. Small children who ask “why?” and “what?” too often
D. Chipmunk heads

Sunday, June 13, 2004 6:31 PM CDT

I have to go into the shop for repair. It seems I’ve sprung a leak. Last October’s surgery has left me with a pseudomeningocele, which is, as I’m sure you know, a collection of cerebrospinal fluid due to a dural leak after spine surgery. Apparently this condition is common enough that it’s actually Google-able.

My neck has been bothering me for awhile and I’d noticed there was swelling at my incision area. Last week I went to see the neurosurgeon and he stuck in a needle and aspirated a surprising amount of fluid and blood. They sent it in to be analyzed and sent me for x-rays; I went back to the neurosurgeon on Thursday who said the fluid was “negative” and that the x-rays didn’t show anything.

Clearly all this good news could only lead to one thing: surgery. I like my neurosurgeon, but he tends to leave out details. All of them. Until I coaxed the word “pseudomeningocele” out of the nurse and went home and typed it into a search engine I had no idea why he was suggesting surgery. In fact, the neurosurgeon had actually seemed to infer that having surgery was MY idea, and I was feeling a bit silly about voluntarily offering up my neck again. Fortunately my friendly neighborhood Internet cleared things up and I now understand that surgery is how this problem is repaired.

I had no plans to move forward on this until I talked to my oncologist. On Friday when I went in for chemo he came to my treatment room to discuss it with me. My neurosurgeon is extremely lax in putting his notes onto the computer for other doctors to read, so I had to fill Dr. W. in. (I’m thinking I could fly through medical school at this point.) We talked about the risks involved when one tackles one problem which then leads to another — like having a tumor removed from one’s cervical spine and then springing a spine leak eight months later, for instance. Dr. W. pointed out that the pain and discomfort I feel all the time may be a result of radiation, not necessarily this pseudothingy, and it may not go away after surgery. Regardless of the fact that my pain could be permanent, the continuous accumulation of spinal fluid puts me at risk for infection, so he gave his blessing to go ahead with surgery. I found the idea of leaking spinal fluid rather alarming but both Dr. W. and the nurse independently told me that one’s body replaces spinal fluid, so leaking it isn't as serious as it sounds.

When I had surgery in October I begged, pleaded and offered hard cash to get a private hospital room…and it didn't work. But now I think I can cash in my "frequent surgery patient" points for a free upgrade. When I brought it up (again) my surgeon admitted that neurosurgery patients run the gamut and some were not particularly desirable roommates. I had two last time. One was wacky but amusing. The other only cried and vomited. Though one would assume that I, on the other hand, am the ideal roommate, my side of the room was “shushed” by nurses a lot. Shocking, huh? Since this should only be a one-night stay, if my plea doesn't work, at least I might get a good story out of it with minimal trauma to my mental health.

My blood counts were low on Friday, but I’ve gotten chemo before with lower counts. This time my doctor said “no,” wanting me to have a less compromised immune system for the upcoming surgery. The surgery date hasn’t been scheduled yet. I’m going to call and harass them on Monday; I’m guessing that most of their patients aren’t trying to work neurosurgery around their chemo schedules. Before surgery I have to have a myelogram, which I had before my previous surgery as well. This is where they inject dye into the spine and take purty pictures of it. This will show where the hole is, providing the surgeon with a “road map” for surgery.

The surgeon requested the same radiologist for my myelogram that I had last time — the doctor who accidentally told me about the brain lesions I didn’t yet know about. While both my oncologist and neurosurgeon have profusely apologized to me about this numerous times, the doctor that actually did it said nothing after he realized his gaff. I’m looking forward to our reunion, where I will give him the evil eye and demand “don’t you have anything you’d like to say to me?” Though instead I might want to find out if knows anything about my condition that I don’t.

To make up for last time’s somewhat wordy missive, I’ll cut this one off right after this posting’s quiz question:

Though I didn’t get chemo on Friday, I still received my Zometa. Why do I get Zometa?
1. To keep my bones strong.
2. Because it has twice the fat and calories of Zominah.
3. It reduces the terrible side effects of my methamphetamine withdrawal.
4. To get to the other side.

Saturday, May 29, 2004 3:45 AM CDT

Wow, it’s been three and a half weeks since my last posting. While it feels more like three and half years to me, you probably think it feels more like three and a half seconds. And since I’ve waited so long, I have about three and a half hours of material. You might want to fill up your printer with a fresh supply of paper and ink, hit “print," then come back in an hour, pour yourself a cocktail, put your feet up, and enjoy some light non-fiction. I recommend a liME rickey because it was the only drink I could find that had the letters “M” and “E” concurrently.

When last we left our heroine she was in the midst of a media frenzy, racing from radio interviews to TV interviews, pausing briefly for high-fashion photo shoots. By the time Race for the Cure Day arrived I could barely see straight. Probably from all the bright lights I’d been under.

Last weekend I decided to play the tape of my KMIX radio interview for my friends and family. I had moved the recorded cassette tape to my stereo system’s tape player a few weeks ago, but never got around to listening to it. When I couldn’t get it to play for the group, I brought out the boom box I'd recorded it on. Everyone gathered around in great anticipation (not really, but this mind picture is better than the true picture of them clustered around the cheese and crackers). We listened to the radio show host do a big introduction and welcome me to the show…and the rest of the tape was blank. I think somehow during the weeks it was in my rarely used cassette player it was accidentally erased. Of all my TV and radio gigs on tape, this is definitely my favorite. But I really have got to stop hosting those séances where we bring back Richard Nixon.

I was remarkably calm race morning. As I was being lifted in the boom truck (NOT a cherry picker I’ve since learned) with the KARE 11 camera man and the Star Tribune advertising manager (whose job it was to say “ready” and then swing her arm while someone on the ground shot the starting gun; How much rehearsal did that take?). It was so incredible to be looking down at the starting line at all the thousands of runners that I completely forgot to be nervous. After being introduced by one of the two KARE anchor people that were in the boom truck opposite ours, I made it through my a cappella version of “God Bless America” with no problems. After my singing and Katherine’s very difficult arm swing, we had to stay put until all the runners were past the starting line. It was unbelievably fun to be perched above the race like this. Runners were waving, we were waving, I couldn’t believe how friendly everyone was; a few moments later I remembered that I was standing next to the cameraman. Good thing I hadn’t yet launched into my “they LOVED me, they really LOVED me” speech.

A few hours later I performed “Smile” at the Survivor Celebration. Despite being surrounded by approximately 5,000 women on bleachers and once again getting an introduction from KARE’s Julie Nelson, I was relatively calm. It was a little more stressful than the earlier number because I couldn’t hear myself singing, I could only hear the sound as it was coming through the loud speakers. If you’ve ever laughed at people who sing off-key while wearing headphones, this was a similar experience. It’s hard to sing on key when you can’t hear yourself. I’m not exactly sure how off-key I was, but it must not have been too painful, because I was invited to perform again next year. And though I didn’t notice this, someone told me I received a standing ovation. I can’t remember who told me this, but if it isn’t true, it’s a great lie. Thanks! The two sets of bleachers were placed in the shape of V and I faced the open part of the V, so I wasn’t actually looking at the other survivors. The rest of the crowd was far away from me at the top of the V (they leave the space in front of the bleachers open so the photographer can take a picture of all the survivors on the bleachers), so I was basically looking out at no one. It wasn’t much different from singing in the shower, except the acoustics are MUCH better in my bathroom.

This past Sunday I had a party celebrating the “release” of my CD. It was a huge success from my viewpoint. Friends also said so, but I believe we’ve already established the fact that they may be liars. I performed the songs from my CD (some of them twice), the audience was attentive and enthusiastic, and I hear the food was great. People came from far and wide (someone reading this is getting VERY nervous right now) but I can’t name names on the grounds that it may incriminate the guilty. Okay, a few names…after all, people that traveled more than 40 miles to buy their own drinks deserve recognition. The always reliable Team Drake was there, Laurie and Helen who reportedly bought A LOT of drinks,; Dick and Mark, the banana cake-bringing boys in the BMW, as well as Anne who drove from Des Moines and partly back in the same day; the long-lost camper Leigh who came from South Dakota; my sister Caryn, also from Des Moines; my parents came with Aunt Betty in tow, (now everyone’s favorite Aunt Betty) who was visiting them from Phoenix. Oh and we can’t forget about good 'ol _____ who was here from ____.

Here’s the latest Melvin Wolf calamity, this time performed without a car: On his way into my party, in the parking ramp behind the restaurant, he walked into a concrete beam with his forehead and fell over backwards. (HE said it was a steel beam, but I’m guessing concrete. How can you trust someone with a possible concussion?) He seemed to be okay. Actually I thought it might have brought about some improvements, but based on stories I heard from friends, he was definitely his old self.

Accept my apologies if you didn’t know about the CD release party and would like to have attended. I purposely didn’t make a public posting because…well…because I was paying for the food and I couldn’t afford to feed all of you! I only invited people who don’t eat much, drink a lot, or recently had gastric bypass surgery.

If you aren’t too pissed about not knowing about the party, and would like a CD, you can order one. Cost is $12 ($11 plus $1 shipping/handling). All net proceeds go to the Minnesota Affiliate of the Susan G. Komen Breast Cancer Foundation. Since I have sold enough CDs to have paid myself back for my out-of-pocket production costs (donations covered a chunk of this), from here on out each $11 goes straight to Komen (until I run out and have to buy more). This amount is over $800 already. Send checks to Dale Wolf, 121 Washington Ave. So., Unit 516, Minneapolis, MN 55401. You can also pay— or I can bill you through — Paypal. To pay, my Paypal user ID is vertigo34@mn.rr.com.

On Thursday I took delivery of my Select Comfort Sleep Number 3000 PT. It was the kind of spur-of-the-moment purchase that can only take place when you shop with four friends that encourage you to buy expensive toys. It not only has the patented Sleep Number technology which allows me to continually control the firmness of the mattress, but for merely twice the price, I got the adjustable version. I can now raise the top and bottom of my bed at my whim. It’s not much different from a hospital bed, except there’s no need to encase my mattress in plastic — most days — so the sheets stay on through its ups and downs. It also has a “Magic Fingers”-like massage feature. I don’t consider bed vibrations much of a massage, but maybe I’m displaying my naivety. If any of you think this is a compelling feature, leave a quarter on my bedside table and vibrate away. One at a time. If two of you show up and lock me out of my room I may be a bit closer to understanding this feature’s benefit. The massage action includes a wave function that moves the vibration from head to foot and back again. That one will cost you 35 cents.

When the delivery men arrived they were able to bring up the mattress but the base would only fit in the building’s one elevator that has a raised ceiling, which happened to be under repair. I was distressed to think that my mattress was upstairs and the remainder of the bed would have to stay in the lobby. Luckily this was the guys’ last delivery for the day, so they didn’t have to hurry anywhere and were willing to wait and see if the elevator would be fixed soon. In the meantime the office manager contacted the elevator company who contacted the repairman who came out from the inner recesses of elevatordom and temporarily interrupted his repair work to get the elevator to the lobby and then up to my floor. It was pretty cool to watch him climb out of the top of the elevator cab and manually pull the cables. Kidding. We actually brought in Superman who got under the elevator cab and pushed it up five floors.

Since we all know I’m never above playing the cancer card, I had already decided this would be a “bandana day” in case I needed to look particularly sickly and pitiful. I think it may have paid off. I also generously tipped the delivery guys for patiently waiting for the problem to be resolved. So it paid off for all of us.

I know the question that is really preying on your minds. What’s my sleep number? Kind of a personal question, don’t you think? You know how private I am, but maybe you can coax it out of me. Okay. I’m an 85. But this is subject to change. They recommend that you find a comfortable setting and then keep it there for five nights. Apparently you can’t jump into mattress firmness decisions lightly. But I’ve lost interest in the mattress firmness test now that I can entertain myself for hours by raising and lowering the head and foot of the bed and watch the cats slide around.

I’ve been nursing a cold/chills/fever/bronchial thing for a few days. By the time the bed was up and swathed in freshly laundered bedding I got in it and stayed there for four and half hours. [Smooth transition from bed to my health]. I’ve been running on adrenaline for a few weeks now, so I think that as soon as I stopped moving, my body gave way. All the hugging and kissing going on at the party may have also put me in germ’s way. I was certain that they wouldn’t give me chemo Friday because of this, but my blood counts passed all their tests and chemo went forward. I was kindly reprimanded by my doctor for not calling sooner so I could’ve been started on a course of antibiotics sooner, but it usually takes me a couple nights’ of fevers until I realize I’m sick, and by that time I knew I was going to see him the next day.

“Chemo forward” was good news for another reason: This week was scan week and going forward with the same chemo means generally good news. I also received a little bad news, followed by some “I don't know what to think yet” info. But it sure coulda been worse. Monday I had a CT scan of the lungs, liver and whatever other organs are in the neighborhood. Wednesday was an MRI of my brain and neck. I was originally scheduled for just a brain MRI but asked my doctor to include the cervical spine since I’ve noticed no improvement in pain since surgery in October, have constant tingling and there’s a large bulge at the incision site.

The good news: No change in the lungs and liver and two of the spots in the brain were smaller.

The entertaining part of the appointment (and when I say entertaining, I don’t mean there was singing and dancing) was the doctor launching right in to the findings in my neck. When he finally finished discussing the cervical spine issues I asked “what about the brain?” He stared blankly at me and then said “I don’t know.” He was so involved with thoroughly discussing my spine that he hadn’t read the brain results. Of course I had to point out to him that the brain was original the purpose of the MRI; the spine part was MY idea

My suspicion that something was up with my neck was validated. There’s a collection of fluid at my surgery site (which explains the bulge) but the MRI can only see it, not tell us why it’s there. Dr. W. called and, as a backup, emailed my neurosurgeon, who was in surgery all day and not reachable. Dr. W.’s concern made me think that he feels this is a rather urgent matter, but then that might just be his normal overly-cautious and conscientious nature. We didn’t expect to hear back from the neurosurgeon until Tuesday, but when I arrived home from chemo the neurosurgery department had already called to tell me I had an appointment scheduled with my neurosurgeon for next Thursday.

The worse MRI news is that one spot in the brain was larger (grown from six millimeters to seven millimeters) and there was a new spot on my left cerebellum. I’ve decided to consider this good news, because who knew I even had a cerebellum, much less a left one?

The plan now is to look at my brain again in a month. One option, depending on the results of the next MRI, is radio-surgery, a one-time spot treatment of the lesions. When I said that I didn’t mind the idea of a one-time treatment, Dr. W replied, “it isn’t fun,” and went on to describe the process: I’d have to lie with my head in a vise-like frame that is literally screwed into my head. Then they spend the entire day "planning,” which is prepping so that the lasers, which are little knives, accurately penetrate the spots they’re aimed at. I’d spend the entire day lying still with my head in a clamp and the actual radiation occurs at the end of the day. As I think about it, it freaks me out. I was pretty freaked out by regular old full-brain radiation. I remember reading the CaringBridge Web site of a woman who had this procedure and it did not sound pleasant in any way. I used to think that I could endure any procedure that requires me to lie down, but procedures that involve the brain always get me rethinking that philosophy. I might manage to look at this as an adventure (i.e. good writing material), but I am certain I would never agree to it a second time. (I’m not even sure that they do it more than once. This looks like a question for Dr. Jeff. And I’d be massively impressed if Dr. Jeff has read this far.) I’m not exactly sure what my hopes for this next MRI are, because I don’t have a full understanding of what qualifies me or doesn’t qualify me for this procedure. My assumption is that more lesions would disqualify me and “no change” would qualify me, but I may have it wrong. I do realize that there’s not much chance of seeing no lesions. Though I’ve never spent much time wishing for miracles, I might be willing to accept one at this point.

Enough about this brain stuff. Let’s move on to painful incidents that are funny, this publication's specialty. My contact lens traumas are always good fodder for amusement. A couple of days ago my contact fell out as I was feeding the cats. It’s not easy to keep hungry cats away from a freshly filled food bowl but I had to pull it away. When I didn’t see the lens on top I was certain Orange had eaten it. But I’d forgotten about the great bouncing characteristics of contact lenses and found it about a foot away.

I’m still suffering from that terrible dry eye problem. I’d finally figured out that putting moisturizing drops in my eyes before removing my contact lenses makes the process faster and less painful. At some point my hyper-vigilantism fades, and I start getting careless about the drops, which I did tonight. My dry lens twisted in my dry eye; the pain was searing and all I could do when I wasn’t writhing in pain was hit myself for being so stupid.

Because my fabulous Sonicare toothbrush has a timer feature that encourages one to brush one’s teeth for an entire two minutes, at night I often find myself wandering about the house organizing things or searching for lost items as I brush. I rarely turn on lights, because the bedroom light provides enough illumination to get me to my destination, wherever it may be. Last night it was to the kitchen to fill up my water glass. As I padded past the kitchen table my foot landed in a large, warm puddle of cat vomit. There is nothing in the world that I find more revolting than warm mammal secretions, (which is the main reason I would never have a dog). I was paralyzed with disgust and stood with my foot in the air yelling “ick, ick, ick, ick, ick [continue for five more minutes].”Then I stood, with my foot still mid-air for another minute trying to figure out what to do. The kitchen sink was closest but there was absolutely no way this foot was going anywhere near anything involving food. I wanted to hop to the bathroom, but I’m so pitifully out of shape I lack the ability to hop. So instead I limped, which was also quite physically taxing, to the bathroom and put my foot in the bathroom sink. For some reason the idea of putting this foot where I brush my teeth didn’t disturb me at the time. I have no idea why I ruled out the shower as an option. I was obviously too traumatized to think clearly. I’m still not over it.

Speaking of excrement [another one of my smooth transitions] today my chemo nurse Trisha and I were discussing a shot I’ve been getting once a month for two years to combat the effects of the stomach damage I experienced from Taxotere. Trisha wondered if Dr. W. had ever considered taking me off it. I said that because they don’t know that the damage wasn’t permanent I would continue getting the shot until I have symptoms that are completely opposite than the problem we’re treating. Our conversation moved on to the cost of such shots. I said I wouldn’t be surprised if it cost several hundred dollars per shot. Trisha's curiosity got the best of her and she decided to ask the Cancer Center pharmacist. She came back to my room with a stunned look on her face. The drug costs $6,000 per shot. I’ve had 23 of them. I should really send a nice floral arrangement to my friends at HealthPartners.

Your three and a half hours of reading are nearly over. I had one story left, but after an entry this long at an hour this late, I think we can both live without it. Remind me next time to tell you about my Methodist Hospital Eyebrow Fan Club. And I haven’t forgotten that I still owe you a quiz. Don’t think I’ve forgotten it. Life isn’t that fair.

Saturday, May 1, 2004 7:16 PM CDT

The sign of true celebrity: 1) I’ve become so blasé that I don’t even announce my media appearances anymore. 2) I have “people.”

I planned to tell you about the radio interview I did Thursday morning after the fact. But when I arrived at the station I found out it was a taped interview, airing Sunday (7:30 a.m. 104.1 FM). So it wasn’t my plan to notify you but if you read this before Sunday morning at 7:30 I may have inadvertently done so. I was again exposed to another radio personality I've never heard of, this time on a station that I've never heard of: Mix 104. (It seems “mix” refers to the mix of music they play, and not mixed drinks. Live and learn.) Like my last radio appearance, I had way too much fun. No doubt this is due to the great enjoyment I get from talking about myself nonstop, but I also seem to be drawn to the irreverent personalities of the radio world, who are not shy about what they’re willing to chat about. (“So, what’s it like to lose a breast?”)

This interview was arranged by Kerker, the Race for the Cure’s P.R. firm. Erin, Kerker’s rep met me there, so I can now officially say that I have "people." Okay…“person.” But I’m working my way up to an entourage. When I get there I’m changing my name to D. Wolfy.

Since the station was right next door to the Komen offices, and I was up, out and finished with my day’s commitment at the crack of 11, I spent the rest of the day fielding Race phone calls. A women I’ve met on the Race steering committee has a pre-school aged son who, when asked about his day, describes a bad day as "dumb, stupid, and shut up." Somewhere along the way he’s decided that "shut up" is an adjective, which we find to be an amusing, as well as handy, phrase. With the race only a week away, I’ve fielded countless dumb, stupid and shut-up phone calls.

The Race gives me plenty of opportunities to hang out in an office with the benefit that when I'm annoyed I can misbehave and not get fired. At times this is a disadvantage. Last week I received a mild lecture for being rude to a caller. Since I have a distaste for phone work, I was doing my best — unsuccessfully — to get taken off phone duty. This particular dumb, stupid and shut up question was from a woman who was having trouble registering online. “Your Web site looks funny,” she stated. Since most of these cases of online problems are due to operator error, I replied without thinking, “Several thousand other people have figured it out." I guess everyone else who answers the phones there is so darn tolerant of dumb stupid and shut up calls that this is going to go down in history as the rudest anyone has ever been to a caller. How proud am I?

Mpls St. Paul magazine has hit the newsstands. The photo that accompanied one of the breast cancer stories is posted in my photo album, though I wasn’t part of that particular story. I am not really taller than the other women standing nearby. If you look at the photo carefully, you can actually see the phone book I’m standing on.

It has finally dawned on me that I have actually agreed, nay, volunteered to sing in front of several thousand people. I now have fleeting moments of gut-wrenching fear accompanied by thoughts of "what was I thinking???" Then I try to tell myself that I'm lucky to be around to stand in front of several thousand people and sing…which doesn’t make me feel any better. My moments of panic were lessening until today when I spoke to my accompanist (who I’ve never met) who has declined to rehearse. He’s fine with meeting up with me at the Race an hour and a half before show time and figuring things out then. He doesn’t seem to be worried about the fact that I’m not particularly fine with this plan, so I’ve decided to make it fine, since my only other option is continued anxiety attacks, which I don’t really care for.

Here’s something I haven’t done in awhile: Used bulleted briefs. Something else I haven’t done in awhile is be brief, but it’s a little too late for that, so here are some bullets:

- My already upside down sleep schedule went completely topsy-turvy. Earlier this week I found myself still trying to get to sleep at 6:30 a.m. two days in a row. The first day I was still wide awake at 7. This was followed by a couple of days where I was forced to arise earlier than usual, which helped turn me back around to my normal turned-around sleep schedule.

- Mary Hirsch has granted me the great privilege of recording an original song: “Pull Yourself up by your Bra Straps.” I met with the composer last week. This is surely a song American Idol contestants will be vying to sing on their “Salute to Mary Hirsch” night.

- Vik has a newly published book that honored me, along with her daughter, in its dedication. (Book plug: “Photographer’s Market Guide to Building Your Photography Business,” by Vik Orenstein. Available on Amazon.)

- Had chemo on Friday. I’ve gotten so used to stating with great confidence “I have chemo on Friday” that I’ve forgotten that there may come a time when my blood counts don’t cooperate. I’ve been planning my life around the Race and hadn’t figured on chemo getting in the way. Thankfully, it didn’t. My blood counts were exemplary. Hah…bet you thought that story was heading a completely different direction, didn’t you?

- On Friday night Diane and I movie hopped. Movie #1 (“Laws of Attraction”) ended at 9:30. Not only did I stay awake the entire time (an unusual occurrence for me), Diane suggested we see if “13 going on 30” had started yet. Geeks that we are, without discussion we walked out of the theater, back to the box office, checked the movie time and then each plopped down another $7.75 to go back into the theaters. The guy behind the window said that he’d never seen anyone do that before. With time to kill before the first movie, we invented a restroom game called “guess what’s in the bathroom vending machine.” I only got two out of five.

That’s all for me now. I have to go sit by my door for the next 11 hours, waiting for Sunday’s Star Tribune to arrive. Uh oh…I promised a quiz this time, didn’t I? I guess it’ll have to wait until next time. But here’s a sample question: Why am I sitting by my door waiting for my Star Tribune to arrive?
a. I’m profiled in the special Komen Race for the Cure section.
b. I have a crush on my paper boy.
c. I want to see if my Mix 104 radio interview made the front page.
d. I’m usually awake when my paper is delivered anyway.
e. I’m scouring the classifieds for a 1974 AMC Pacer.
f. I can’t wait to see what that hilarious Ziggy is up to.
(Hint: Two answers are correct.)

Monday, April 19, 2004 9:26 PM CDT

Ya know, ever since my cat appeared on television he has been impossible to live with. He’s really copped a ‘tude. But it was an excellent performance, despite how uncooperative he was in the make-up chair.

As fun as being the breast cancer poster child has been, the stress has taken its toll, Fortunately it’s nothing some Stridex Medicated Pads and Clearasil can’t cure. Last Wednesday was my live TV appearance. From my point of view, it was even more painful to watch than it was to experience, which means it was pretty darn painful. The camera proved something about which I’ve been in denial: that I'm not nearly as young, thin or as cute as I think I am.

I was dreading the previously-taped segment more than the live interview. It had fortunately been edited so that it wasn’t as horrible as I had anticipated, except for the scene at chemo when my nurse abandoned me and I was sitting alone in the room with the camera rolling. The live interview is somewhat of a blur, as is everything that happens to me before noon. He lobbed some questions at me that forced me to think on my feet, which isn't my specialty, especially under the glare of the spotlight. (There's a reason I write — because there's time to think before spewing forth my brilliant thoughts.) He asked me what the dumbest thing he could say to someone like me would be. Off the top of my head I said, "My Uncle So & So had cancer and he's just fine now." I wish I'd said “Aunt So & So,” but otherwise I was thrilled to have pulled an answer out of my you-know-what at all. On the negative side, my Uncle So & So was kind of offended.

There was an actual "green room” where the show's guests waited before going on the air. My fellow guests included a skater from Stars on Ice’s Monsters Inc., a guy that wrote "Cleaning for Men," and craft ladies that decorated with Easter eggs. There was a TV there to watch the show and the green room gang and I were laughing at the first guest who was had frizzy red hair, was about 4 feet tall, and was cooking something that looked ghastly. When I watched my tape of the show later I discovered it was Sheila Lukens, a fairly famous cookbook author. (I’m glad to say that she didn’t stick around to laugh at me.) My segment followed a taped interview with Brian Dennehy and Vanessa Redgrave, who were interviewed by Pat Evans, the same man who interviewed me at my home and on the show. I thought that was something to brag about until a couple of days ago when he interviewed Amy and Nick from The Apprentice. Now that's some serious star power.

The next day I had a photo shoot at the Star Tribune. They made the huge mistake of giving me the profile that was written about me to edit. They obviously didn’t know what they were doing. In the future they may rethink the idea of giving their subjects power of revision.

You probably won’t be surprised to learn that my willingness to put myself in the media eye by embarking on all these adventures is related to my tenuous health situation. I’m living my life by one simple philosophy: Life is short. Get in all the public humiliation you can.

In this same vein, in my continuing plot to elbow out Susan G. Komen and turn the Race for the Cure into a Dale A. Wolf Breast Cancer Foundation event, I’m on the entertainment docket at the upcoming Race for the Cure and will be singing a song at the Survivor celebration. I’m not nervous, since it’s only in front of 5,000 of my closest friends as well as a few of the other 40,000 participants who will be milling about. I’m also on standby for singing the opening patriotic song that kicks off the 5k run (possibly perched high above the crowd in a cherry picker). They’re waiting for a “yes” or “no” from a real singer, but I’m the first runner up in case the number one candidate is unable to fulfill her duties. The guy who’s singing the patriotic song before the 5k walk is the winner of the “Minnesota Idol” competition. Lucky for them they also have at their disposal the winner of “Middle-aged Breast Cancer Survivor Idol.”

My name was in Saturday’s Star Tribune in an article that….get ready for this…had NOTHING to do with breast cancer! Shocking, isn’t it? They asked readers to submit made-up words. The rules were to take any word from the dictionary, alter it by adding, subtracting or changing ONE letter and submit a new definition. I sent a list of about seven words, and they used one: Minkling: A slight indication that something might be made of fur. (They edited it so it read differently. Can you believe it? Someone editing ME?) It was even accompanied by a cute little illustration. My personal favorite of my submissions that they didn’t use was “comepuppance: Punishment or retribution received by those who are mean to doggies.”

[Note: The Microsoft Word document where I keep of all my previous emails and CaringBridge postings is currently at 385 pages. If I move ahead with my plan to insert cartoons throughout, I should end up with a manuscript roughly the size of a Western Lowland gorilla.]

Last Friday was chemo day. My blood counts are always on the low side which usually results in deeper analysis (a “differential”) in order to determine whether I can receive chemo or not. The parameters are different depending on whether it’s a Taxol day or a Taxol/Carboplatin day; they’re allowed to be lower on Taxol-only days. This was a Taxol day and it was a chemo go. Sunday was my planned day of rest and as usual, I excelled at it. I went to bed at about 5 AM Saturday morning, slept until 3:30 PM, got up, moved to the couch, started a DVD, read one section of the Sunday paper and fell asleep. It doesn’t feel very restful because when I nap, I usually dream about my nap. I often dream that my eyes are open and I’m awake. Recently I dreamt that my eyes were stuck shut and I couldn’t get them open. Thankfully I’ve never had that dream about my mouth.

I’ve noticed that my last few Web postings don’t contain much complaining about aches, pains and eye traumas. This is for those of you who revel in my tales of discomfort: The incision site on my upper back itches like crazy!

In my profile on KARE 11 and in the upcoming Star Tribune (Sun., May 2, for those of you like my cousin Caryn who haven’t erected neon signs to commemorate this event) there are mentions of my list of breast cancer perks. The original list appeared in the 1998 issue of the ME tiMEs, but has been modified slightly over the years. Here is the current list:

TOP 10 BREAST CANCER PERKS

1. Haven’t had to buy myself a meal in almost six years.
2. Provides a convenient excuse to behave badly and get away with it.
3. Get to find out what most people only wonder about: What I look like bald.
4. Tummy tuck included with breast reconstruction. While the rest of my body falls apart, at least I have a flat stomach.
5. Gets me out of doing things that I didn’t want to do in the first place.
6. The “all Krispy Kreme, all the time” diet
7. Never have to take my pants off at doctor’s appointments.
8. You don’t have to look that great in order to hear the words “You look great.”
9. People are really nice to bald women.
10. All I have to do is show up at an event, remain conscious most of the time and people think I’m heroic and courageous.

Lest you think I’m blinded by my rose-colored glasses, I’ve begun another list:

TOP ( or is that “bottom?”) FIVE BREAST CANCER DRAWBACKS

1. Had to learn the hard way that wig hair doesn’t grow back.
2. Others don’t have a good enough appreciation for their lash, brow and nose hairs.
3. Never know how far out to renew my TV Guide subscription.
4. “Tired, hairless, not-very-healthy single woman…” isn’t a big response-getter in a personal ad.
5. Oh…and that cancer thing.

Next time: A quiz. Study up.

Friday, April 2, 2004 11:22 PM CST

Just returned from three days and two nights in Iowa. My mother had a hip replacement a few weeks ago, so I had to do the obligatory daughterly duty of paying a visit. Sure, normal families would be sitting in the waiting room while she was in surgery, worrying and fretting until the doctor comes out and says “everything’s fine,” but I’ve never claimed to come from a normal family. The couple days following surgery were agonizing for her, first due to an overdose of morphine, followed by none at all. She was home and seemingly on the mend when she fell on her back. The story goes that she had to lie there and yell for my dad for quite a while before he heard her. In my family this type of thing generates accusations, rather than concern. Why would she wander around the house without a telephone attached to her chest? What was she thinking in not subscribing to that “I’ve fallen and I can’t get up?” service? Why doesn’t my dad have his hearing aid turned up to “high” when mom isn’t in the room? But I’m not a blamer, I’m a problem solver. I’m going to buy her a whistle. Or teach her to whistle. Or buy her the book “Whistling for Dummies.”

My dad and I took a brief shopping excursion on Wednesday and forgot to put the phone next to mom when we left. When the phone rang while we were out, her attempts to stretch to reach the phone brought on a whole new body trauma. Yesterday she could barely move at all. Of course I did what any sweet, caring, loving daughter would do under such circumstances…I got out of town. Fast.

In my defense I had to get back for chemo today. Once again chemo comes to the rescue. I feared that once my lab report came in, it would show that my white blood count was too low for chemo and I that I made a break from Waterloo without a feasible excuse. Luckily my excuse turned out to be valid. I called her tonight to check in and she’s still in excruciating pain. But enough about her. (Did I mention that I was sweet, caring and loving?)

My life as a breast cancer poster child continues. Last week I went to the KS95 radio studios and broadcast live with Moon & Stacy, their evening drive team. I mildly freaked out when, during my drive to the station, I turned on their show and heard them plugging my upcoming appearance. When I arrived and we went on the air they told me what a big build-up the people in the Susan G. Komen office had given me. My response was, “Please stop. This is too much pressure. I have cancer you know.”

Of the four interviews I’ve done so far — the Star Trib, Mpls St Paul Magazine, KARE 11, and KS95, the KS95 thing was the first one after which I didn’t feel sick to my stomach. I’m either getting better at being interviewed or I’m getting used to making a fool of myself.

The Moon & Stacy show turned out to be a very fun time; I could’ve hung out and chatted with them all afternoon, but unfortunately they only wanted me for 10 minutes. I can’t imagine that their listening audience didn’t want to hear more of me. In fact, I’m a little surprised I haven’t heard back from them once they became aware of their huge ratings boost that day between 4:10 and 4:20.

Next week my breast cancer tour stops at the KARE 11 Today show. (Wed., April 7 between 10 & 11 AM.) KARE is the local NBC affiliate that’s sponsoring the Race for the Cure. This is when they’ll play the segment they taped a couple of weeks ago and also talk to me live. The camera man joined me at chemo two weeks ago; I was concerned that me sitting in a chair might not make particularly riveting footage; my camera-shy chemo nurse Tricia made sure this was the case by disappearing completely. I thought I had prepped her. I even suggested what we could converse about while tape was rolling, but instead she panicked and vamoosed. One of things she used as an excuse was that she was across the office talking to my doctor about my low blood counts. Today he informed me that he too was purposely staying away from the camera. (Earlier in the week I had bumped into him at the clinic and mentioned that he was welcome to stop by for the taping.) After he told me he was also hiding, I mentioned that his colleague Dr. Leach was much more cooperative when one of his patients was on Dateline. Dr. Wilkowske asked, “Do you know what he did when he was being taped for Dateline?” I said no and Dr. W. explained that Dr. Leach had said one sentence and then giggled the rest of the time. Reflecting on this now I don’t understand why oncologists feel that there’s a something wrong with giggling on television, but then this is coming from a woman who — in front of a camera — sat in a chair, pounded on its arms and chanted “I want chemo, I want chemo,” so perhaps I’m not a good judge.

“Flip-flop.” I’m glad that term has been in the news recently because that’s exactly what I’ve been doing regarding my decision to sell, rather than give away, my CD. There was a point in the process where I was adamant that my CD would be a give-away item. The decision to give it away was based on my enthusiasm over the project coupled with the fact that it would be still a work-in-progress if it weren’t for the generous donations of many people. Why would I ask people to pay twice?

As time passed and friends offered up opinions, I rethought my plan, feeling that I needed to put a value on this artistic piece de resistance. Now that I have the real, live, multi-dimensional CD-like object in my clumsy but ecstatic little fingers I began to waffle again, wondering how I could offer my CD with one hand and hold out the other to take your cash. But I got over that.

Now I’m mulling over how to go about this so that I don’t actually make a profit, can benefit a charity, and not end up in jail for evading sales tax laws. Today’s plan, which may differ greatly from tomorrow’s, is to charge $11 per CD ($12 for those that are mailed to mostly cover shipping), reimburse myself for the amount I personally outlaid to produce the CD, and give everything I receive beyond that to the Susan G. Komen Breast Cancer Foundation. In case you’re wondering, the $11 price was arrived at based on a complicated mathematical equation: I really like the number 11. It’s my favorite number. I still need to do a little homework to flesh out this plan…or change my mind. Flip. Flop. Flop. Flippity-flop.

You know how much I hate to blame others and point fingers, but my friend Nancy is the most recent person responsible for convincing me to sell the CDs. She insisted that even those of you who originally contributed to the CD fund, would not mind paying for it, and would in fact expect to. I would welcome your expressions of eagerness to pay a measly $11 for such a wonderful musical experience. Arguments from those unwilling to pay from anyone whose name isn't Marna will also be thoughtfully considered.

Info on the CD release party is forthcoming by email, if I can get the piano player to confirm a date. Tonight I left him a third message, this time threatening to stalk him if he doesn’t respond soon. I’m sure charming behavior like this will get me full cooperation pronto.

Today was chemo day. My treatment schedule remains every two weeks. Barring any potholes in the meantime, my next round of scans (a brain MRI and a CT of my lungs, abdomen and liver) are scheduled for May 24 and 25, just before my next doctor’s appointment on May 28. After seeing him every three to four weeks for the past six years, my doctor has recently begun to see me only every two months. I realize that this is supposed to be a good thing, but a stalker named Dale may be in his future as well.

Friday, March 19, 2004 2:47 AM CST

It is absolutely exhausting to be a media darling. Or a middle-aged, bald poster child. Either way, it’s exhausting. My involvement with the Twin Cities’ office of the Susan G. Komen Foundation is parlaying its way into 15 minutes of fame. I’m refraining from calling this a “cancer perk” however. I fear it’s going to be more of an embarrassment.

In conjunction with the Twin Cities’ Race for the Cure, Komen provides the local media with a list of breast cancer survivors to contact for interviews. Despite my shy, introverted personality, I found my way onto this year’s list. The press began descending a few weeks ago with interviews with the Star Tribune for their special Race section on May 2 and Mpls St Paul Magazine for their May issue’s special breast cancer section. After both interviews I made myself sick obsessing over every word I’d said, regretting most of it, and wanting to call the writers to claim temporary insanity.

If I thought I did badly at these interviews, they may pale in comparison to this week’s event. Pat Evans, the host of the KARE 11 Today show, came to my house with a cameraman. I was taped while Pat interviewed me, and then Paul, the cameraman, took some shots of me doing my “thing:” tip-tapping on my laptop and water coloring my comics. I wasn’t so great at being taped at what I do best, staring blankly at my computer, so you can imagine how well I thought the interview went. Pat Evans may have agreed, since he was intent on making sure that my over-sized cat Orange was included in the video…even after he was hissed at and Paul received a “warning” bite. Orange was the star of the show as he wound through my art supplies and plopped down on the comic I was coloring. I will be reuniting with Paul on Friday, when he comes to chemo to capture some spellbinding footage of me sitting in a chair.

When the KARE crew left, at the same time I was kicking myself over the dreadful interview and everything I meant to say, I suddenly remembered that before the end of the day I had to drop off my comics at Mpls St Paul Magazine, who had expressed an interest in publishing them. (I would much prefer that they take the space it would use on my interview quotes and fill it with my cartoons instead, but I don’t think I have the final say.) So I furiously continued water coloring; Orange continued to wander through my art studio (i.e. my dining room table), padding right through my palette of paints. It took a few minutes before I noticed that he had tracked orange (yes, really) paint across three finished cartoons and across the floor.

After I made my comic drop-off at the magazine, I found myself more than halfway to Marshall-Fields. Not one to waste a perfectly good walk, I spent the next three hours and many dollars buying a new wardrobe to take to a Mpls St Paul Magazine photo shoot the next day. They told me to bring one casual outfit and one dressy outfit that were springy and solid colored. Of course my closets — that are bursting at the seams — contained NOTHING I could wear.

The photo shoot on Wednesday was a group photo with three other women who were interviewed. I was an hour late because I missed where I had written “noon” on my calendar (when they started doing our make-up) and only saw the 1 to 3 part. At 12:30 I received a call asking when I would get there. It wasn’t a big crisis because I live close to the studio, and there were three other women to be made up. Upon arrival, I not only took full blame for the mistake, but I didn’t even play the “chemo brain” cancer card that I usually pull out of the deck for such situations.

Next on my press tour: Wednesday evening I may do a live radio broadcast with Moon & Stacy. I’m not particularly nervous about this one, because I have no idea who Moon and Stacy are. Plus, I have a face made for radio. In early April I have a photo shoot for the Star Tribune article. I’m hoping to get them to use up space printing my comics.

Part of me will be glad to see my media opportunities come to an end, but another part of me would like a few more chances to finally get it right. In the meantime I'll remain hopeful that all these interviews will be edited in a way that don't make me look any more foolish than I’m used to looking. I don’t know when the KARE 11 piece will be broadcast, but I am told that I’ll also be making a live appearance on the show. It is highly unlikely that however bad the taped segment might be, that I will redeem myself during the live appearance. I am looking forward to May 9 (Race day) when I can put all this behind me. I can’t call it an embarrassment for certain at this stage, but I may be done in by the stress of spending the next month and a half worrying about how embarrassed I’m going to be.

Oh yeah...about that cancer thing...all is status quo. Chemo continues without incident. Nothing new, which is extremely good news in my book.

In my last posting I referred to the fuzz growing on my head as “invisible hair-like matter.” Last night I was inspecting it more closely. It looked like it had grown. Upon closer examination I realized it wasn’t that it was invisible, it’s that it’s WHITE. I have WHITE hair. I can’t imagine what could have occurred in my life over the past several months that would make my hair turn white, but I’m going to rack my brain and try to think of what it might be.

Friday, March 5, 2004 1:35 AM CST

I’ve decided to take a moment and appreciate not having a sore throat. We all know how awful sore throats feel. Unlike a fever or nausea, one can not pretend to alleviate the misery of a sore throat by burying oneself under a blanket and moaning and groaning. Nor can you escape your suffering through sleep. It dawned on me recently, when someone told me she had a sore throat, that when I DON’T have a sore throat I don’t spend any time appreciating how nice it is not to have one. So I’ve decided to pause once a day, swallow, and be very happy that my throat isn’t sore. Some of you might do something similar with cancer after I tell a particularly harrowing tale, but I’m going to have to stick with the sore throat thing.

A couple of weeks ago I spoke to 100 Star Tribune advertising sales reps. They had a meeting to kick-off ad sales for the special section they publish in May in conjunction with the Komen Race for the Cure. It’s somewhat ironic that I was there to represent breast cancer survivors, since I continually profess that I don’t represent every woman with breast cancer. But the fact that I continually profess that I don’t represent every woman with breast cancer at least gives me something to say when I’m asked to represent women with breast cancer.

When the Komen people asked me to come to this meeting and say a few words (I know what you’re thinking…shut up), I was told not to worry about preparing a speech, just tell my story. Fortunately this was one of those times that being cynical and never believing anything anyone tells me came in handy. It also helped that I’m painfully aware of my lack of talent for extemporaneous speaking. So I prepared a 20-page outline of amusing anecdotes. Perhaps this was a bit of overkill for a three to five minute talk, but I like to be prepared. And when I’m nervous I speak quickly, so I was able to cover all my material, with time left over to perform an interpretive dance and whip up a tasty soufflé.

The story of my eyes and eyebrows in my last posting certainly caused a deluge of suggestions, which leads me to ask: Did I ask for your advice? Do you really think anyone is more an expert on watery eyes and melting eyebrows than I am? However, lest these guest book suggestions lead others to believe that I’m a complete idiot who hasn’t attempted to solve this problem, I am now going to hold your advice up for ridicule:

From Anne S.: “Here's a thought though...how about, um, well, it's sort of unconventional, but, well, how about WEARING YOUR GLASSES so you don't need to deal with the drama of contacts right now? That way you could see AND probably save some time in your day…”

Didn’t I say that there would be a reading comprehension test on this material? The answer to this extremely patronizing posting that infers I’m an idiot, is that my eyes and eyebrows water when my CONTACTS AREN'T IN. Thus, when I’m wearing my glasses, my CONTACTS AREN'T IN, which means my eyes and eyebrows water preventing the application of eye make-up and/or causing the eyes/brows that have already been applied to drip off. Sheesh. From now on, read carefully before attempting to make fun of me on my Web site!

From Karen S.: “So, glasses are not an option?? Put on makeup wearing contacts, remove contacts and wear glasses....very elementary, my dear Watson!!”

Again, I sense a condescending tone here. First, see above retort to Anne S. Second, also included in your study guide, watering is an issue during BOTH make -up application and make-up wearing, which results in said make-up watering off. What? Do you think that my eyes/brows magically STOP watering once my make-up is on? If this were the case I wouldn’t have a problem to prattle on about incessantly in the first place.

It had seemed to me that approximately 25 people gave me unsolicited advice on this topic. As it turns out, it was just these two. Not quite the deluge I remembered. Darn. I was hoping to have many more paragraphs of rejoinders. [sigh] If you would like to be held up for scorn and derision in a future Caring Bridge entry, please feel free to use the guest book to advise me on any of the variety of topics that make me especially crabby.

So, what’s worse…beating something into the ground or beating a dead horse? Having done both at one time or another, they’re both pretty tiring when you’re as good at them as I am. Next topic.

Pizza. To what lengths will people go for pizza? How far will they travel? How much are they willing to inconvenience a good-hearted, generous friend? (No, surprisingly I’m not talking about myself.) Might they make her fly from Los Angeles to Des Moines, use a rental car to pick up eight pizzas, make her figure out how to get them on an airplane and deliver them to five eager people waiting with outstretched arms at MSP’s baggage claim? Yes they would. But in our defense, we didn’t insist that they were hot and arrived in 30 minutes or less.

I’ve been under a lot of pressure to share this story with you in a way that would have you think it’s as clever and amusing as I and my friends who were involved think it is. I started writing this a few days ago, struggled with the “clever and amusing” thing and ended up procrastinating on the entire posting. Now I’ve decided to face the fact that I’m not up to the task, get over it, and move on because frankly, I can’t handle the stress.

Here’s the gist of it: Laurie, Helen, Dick and I fondly reminisce about Noah’s pizza from our days at Drake. (Well, some of us remember the pizza…my memories are more about how we would wake up Dick late at night to take us to Noah’s because he was the only person we knew in the dorm with a car. Once he changed out of his striped PJs, we’d go to Noah’s, where Dick made us pay based on how many slices of pizza we ate.)

Laurie (a.k.a. “The Planning Department), who lives in L.A., travels to Des Moines for meetings a few times a year. She offered to pick up Noah’s pizzas and deliver them to Minneapolis. This was enough to convince Helen to fly in from Washington, D.C. and Dick and Mark to drive up from Davenport. (Unbeknownst to them, I also invited Anne--a.k.a. “the mystery guest”--who drove in from Des Moines.) Laurie boarded a plane juggling eight pizzas and arrived in Minneapolis in good humor…even after realizing that Anne had just come from the same city in a car. I pointed out that if Anne had brought the pizzas, we wouldn’t have nearly as much fun reminiscing about this in the future. After all, what’s more interesting: Anne drove to Minneapolis from Des Moines with eight pizzas in her car, or Laurie flew to Minneapolis from Des Moines with eight pizzas in her carry-on bag? I knew you’d see my point.

Many of you have inquired as to the status of my CD. After a lengthy cover design process, I am happy to report that on Thursday, March 4th (a day of no significance whatsoever), I marched forth and delivered the CD and cover artwork to the CD manufacturing company. I don’t know about you, but I think this occasion deserves a heartfelt “wooooo hoooooo!” The final product will be completed 10 days after approval of the final artwork (which I will receive in the next day or two). Then it’s on to the most important part, the CD release party (and of course the delivery of CDs to those unable to attend the celebration). Further details regarding ways you can get your hands on this highly-coveted item are forthcoming. Please stand by.

Here’s some more good news. I was hesitant to make this announcement until I was a little more certain that the information I’m imparting is accurate. I can now make the following statement with a fair amount of confidence: My eyelashes are growing back. You have to look pretty darn closely, but there’s something growing there that, if I can remember correctly, I believe is called “hair.” A couple of the lashes are long and look rather lonely. I’m not promising them that their little lash friends will be joining them soon, but we’re hopeful.

There is also a very light but nearly invisible hair-like matter covering my head. It serves no useful function hair-wise, but it does make my head feel soft and fuzzy. Requests to pet me by anyone other than George Clooney will be refused.

Thursday, February 12, 2004 2:01 AM CST

Have you ever thought about all the things you’d do if you had the time to do them? Most people’s lists are comprised of things like catching up on all the books on your “to read” list; writing the great American novel; going to movies in the middle of the day; taking gourmet cooking classes; subscribing to and actually reading the New York Times; studying the mating habits of small land mammals, etc.

I’m glad I didn’t have a list like that. Those things sound exhausting. As I approach the one-year anniversary of leaving the world of work, my biggest achievement has been embracing the fact that I’m a complete schlub. Additionally, I’ve been pretty successful at completing items on my own less conventional list: Sleeping in until I feel like getting up…and not getting up then either; conferring several hours daily with my remote control; burrowing deeper into the couch every day so that after a week I’m no longer visible; and finally, positioning myself as a taste expert on every variety of Gedney pickle.

It feels like it’s been months since I’ve had chemo. Though there was only three weeks between treatments, this last “batch” packed the wallop of the old days, which I haven’t felt in awhile (or don’t remember feeling, which is almost the same thing). I’d almost forgotten why they call it “chemo” and not “party time.”

Despite my recent good scan news, the past week has definitely not left me feeling very celebratory. I guess I have celebrated in my own little way, which involves lots of sleeping, napping and resting. Since last Friday I’ve left the house once. I had intended to go to a meeting last night but those plans were abandoned after one of my infamous contact lens incidents.

Here’s the latest educational tidbit for you: If I’m not crabby before getting ready to go out, I’m usually pretty crabby once I’m ready. Pay close attention to the following; there WILL be a test. I thought I’d pretty much whined my way through these complaints long ago, but shockingly, some of you have not committed them to memory. Ready? Here goes: If I don’t wear my contacts while applying my make-up, my eyes and eyebrows water which then make them impossible to draw on. This means I have to wear my contacts while I’m applying make-up. Unfortunately my lack of eyelashes mean that the contacts are usually completely goobered up and blurry by the time my make-up is on which means they need to be taken out and cleaned or I spend the rest of the day looking at life through a haze; if I take them out to clean them, there are two dangers: 1) Putting them back in makes my eyes all wet which defeats the original purpose of putting them in BEFORE I’m made-up, or 2) my wacky dry eyes make the contacts difficult to remove and I end up hurting myself in the process of removing them (as occurred Wed. night and that fateful day in Las Vegas two years ago). And wearing glasses and NOT wearing contacts is not an option due to the aforementioned watering problem. Any way this goes, I end up crabby, so I find my new life as a hermit who never leaves the house working out quite well.

Now that I’ve explained my eye/make-up/contact travails, let’s return to the scan result topic. I had feared that my last posting might cause “over-celebration.” The champagne-worthy piece of this news is that after a year and a half of cancer growth -- including its invasion to new parts of my body -- and ever-changing chemotherapies, we may have finally hit on some drugs that will temporarily slow the cancer down. I’m not cured. Statistically speaking, the cancer probably won’t disappear or even stop growing for long. You may already have a complete understanding of the situation, but I feel it’s an important point to reiterate because I recently discovered that Marna knew nothing of my wet eyebrow problem, which is a topic I thought I’d run into the ground in past postings. Stunned to discover that people are not committing my every trauma to memory, I thought I thought I’d recap the cancer thing, just in case.

Tuesday, February 3, 2004 9:57 PM CST

I don’t know how to break this to you, but I have good news and more good news. Usually I like to start with bad news, because, well…uh, because that’s all I usually have. Now that I have some good news -- not to mention the good news -- I can’t decide which to start with, the good news or the good news.

If you recall my last posting, I was feeling “on the fence” regarding the outcome of the CT scan of my lungs and liver. Well shove me off the fence and call me Shirley, because the CT showed that the spots in both my liver and lungs are smaller than they were in the CT scan I had in early October. And I was certain that the MRI of my brain held nothing but news of larger tumors that would soon have me babbling incoherently and wearing my wig inside out. Instead it showed a decrease in two of the three areas of metastases, no change in the third area and, “no evidence for new metastases.”

When I suggested to my doctor that my gut instincts leave something to be desired, he didn’t doubt that the twinges of pain and dizziness I’ve been experiencing are real, suggesting that they’re caused by the steroid that I’ve taken since surgery in October and have recently weaned myself from. I don’t think I’ve ever known a drug that was to blame for so many afflictions. I find it hard to believe, but I like the steroid excuse way better than explanations that include the words “paranoid” and “hypochondriac.”

Since my blood counts have not been cooperating with a weekly chemo regimen, a new chemo schedule accompanies the positive test results. I haven’t received chemo for the past two weeks; my oncologist would like to get me on a schedule and dosage that I can hopefully withstand enough to receive regularly, as opposed to showing up weekly, getting my blood drawn and then being sent home chemo-less at least every other week. And those smaller spots in my brain, liver, and lungs kinda motivate one to want to keep the chemo flowing, so the new “plan” is an every other week schedule. It begins this Friday with Carboplatin/Taxol, then a week off, then Taxol the next Friday, then a week off, then lather, rinse, repeat.

Good news AND one of my shortest postings of all time. It looks like it's been a good day for all of us. Now stop calling me Shirley.

Sunday, January 25, 2004, 1:30 AM CST

Let’s all pause for a moment of silence to honor my dearly departed eyelashes.

[pause, sigh, sniffle…]

Thank you. You may now proceed with your day.

I posted a scary new photo in the photo album. To get me from the “before” to the “after,” it takes approximately one hour and 800 Q-tips. When I showed this picture to a friend she said “the one on the left doesn’t even look like you.” To be accurate, I’m sorry to say that it’s the photo on the right that really doesn’t look like me.

But the aspect of the photo that scares me the most is the double chin. I took the photos using the self-timer and placing the camera on top of a tall pile of boxes on my kitchen counter, but I apparently didn’t pile them quite high enough. I was going to go back and retake the pictures from a higher altitude, but before I had the chance, most of my eyelashes and more of my invisible eyebrow hairs disappeared, so I decided not to bother. I am not getting better looking each day, that’s for sure.

One of my bigger — okay, MANY — complaints is a constant, uncontrollable drippy nose. In addition to the snot involved, my low platelet counts results in – unbeknownst to me until I wipe it away — blood often dripping from my nose. The fact that I have a runny nose isn’t especially unusual for someone with chronic rhinitis and lots of chemo in her system, but the nurse practitioner suggested that the reason for its uncontainable dripping is because I have no nose hairs. Hmmm…I found that to be an interesting explanation. When I got home I cozied up to my make-up mirror with a flashlight and sure enough, she was right…I have no nose hairs.

Let’s just say that if the thought of me baking while my hair was falling out seemed unappetizing, don’t even ask about me baking with my latest problem. (No Marna, I am not going to tell them about the blood and the cookie dough.)

I had an excellent two-week chemo run. The four weeks prior my blood counts only allowed an every other week schedule, but with the help of the doctor lowering the parameters for acceptable blood counts, I managed to get in treatment two weeks in a row, until this last Friday when I couldn’t even meet the lowered expectations. Instead I received my Zometa, my Aranesp shot, and as an extra bonus, a bag of IV fluid. The fluid was given to me with the hope that my recent complaints of feeling dizzy are from being dehydrated. Unfortunately, I don’t think so, but regardless, I’m always happy when I don’t have to take fluids by mouth.

Next week is scan week. Based on my finely honed gut instincts, I’m on the fence about what Wednesday’s CT scan may reveal about my lungs and liver. Good news or bad, I wouldn’t be surprised either way. I’m NOT expecting good news from Thursday’s brain MRI, however. I’ve been having a bout of head “twinges” this past week that scare me. These are often accompanied by the aforementioned dizziness and an overall sense of being off-balance. I see my doctor the following Tuesday for results, if I can manage to wait that long without exploding. Here is a summary for your edification: CT scan Wednesday, brain MRI Thursday, results Tues., Feb. 3. You don’t need to call this week and ask how the scans went (I’m talking to specific people who know who they are). The scans themselves are always the same (in the case of the CT scan, always an extremely unpleasant experience for my stomach). If I fall off any tables or demagnetize the MRI machine, I’ll be sure to write a posting and tell you all about it.

On a less scary and more musical note (Donald? Did you catch that?) last week I finished recording my CD. I now hold the master CD in my hands and am awaiting final cover artwork. My graphic designer made a brief reappearance but the revised layout had so many errors it was unreadable, which gave me the opportunity to completely rewrite the original copy. It’s that terrible editing sickness I have — I’ve so far spent four hours writing two paragraphs. The next step is to order copies, jewel cases and get the insert printed, all of which are done by the same company. Close…it’s SO close to being done.

Last week at chemo I discovered a college friend that I haven’t seen or talked to in about 23 years. While it should’ve been out and out fun to run into an old friend, the fact that she was at the cancer center getting chemotherapy knocked some of the joy out of it. The amazing thing is that she’s been getting treatment there for three years, I’ve been in and out of that place for even longer, and our paths have crossed dozens of times. I had seen her husband coming in and out of the treatment area many times and could never figure out why he looked familiar until last week when he walked by wearing a Drake sweatshirt.

My chemo nurse, a HIPAA fanatic, refused to give me any information about who he was. When I told her who I thought he was and that he’d been married to someone I knew, she asked me her name. She still wouldn’t give up any information, but she also has a lousy poker face. I finally asked her if I needed to sign anything in order to get her to go tell them that someone in another treatment room named Dale Wolf knows them. Sure enough, a few minutes later they came to my treatment room for a mini-reunion. (Really mini on her husband’s part since he had no memory of me whatsoever.) Some of my Drake friends — Stalnaker friends in particular — are probably curious to know who I’m talking about. You should contact me privately since HIPAA requirements will not allow me to put her name in my posting.

Since next week’s update has the potential to be less than cheery, here are some miscellaneous silly, mildly amusing, or not-in-the-least-bit-entertaining stories to make up for it:

Story #1: To celebrate my sister Marna’s 50th (yes, FIFTIETH) birthday last week, we went to P.F. Chang’s on Sunday. At some point in the evening I crossed my legs and put my hand on my ankle. I was surprised to feel a soft lump. It was then that I remembered that I had intended to change from my slipper socks to regular socks before I left the house; I was distracted and forgot (as I do about 32 times a day) and had gone to dinner in my soft fluffy blue socks with stuffed monkey heads attached.

Story #2: I was awoken one recent morning to loud noises coming from my bathroom. I got up and hesitantly creeped in (worried that a rat had swum up my toilet), and instead found a plumber’s snake poking up my drain and making a huge mess. As it turns out, unbeknownst to me or the plumber working next door, my neighbor’s pipes and my pipes are connected. I was a little baffled by the sight and more than a little drowsy, so what I did made perfect sense to me at the time: I slowly opened up the cabinet to see who was under my sink.

Story #3: Gayla Harrison spotted my name in the Jan. 14 USA Today and was kind enough to not only let me know, but send me the full-page ad where she found it. It was a BMW ad thanking all the “Local Heros” across the country who were involved in BMW’s Ultimate Drive for Breast Cancer. All the names were laid out against the right side of a large pink ribbon. Being near the end of the list alphabetically was a benefit; I practically had my own line. When Gayla wrote that she clipped it from the paper, I initially missed the “USA Today” part of her note and could not figure out why BMW would run this ad in the Bloomfield, Iowa newspaper.

Story #4: Here’s something I didn’t know: Caring Bridge misses me when I don’t post! Okay, I can’t speak for all of Caring Bridge, but Cindy, the wonderful and responsive customer service person who helped me through some technical problems not long ago, called me Friday morning because I hadn’t posted in a while and she was worried about me. How nice is she? Brave too, since those are the kinds of calls I’m afraid to make. (What do you do when you hear, “I’m sorry, this number has been disconnected…”?) Cindy is not the only person I’ve worried recently…

Story #5: Laurie flew into MSP a couple of Saturdays ago. Her flight was scheduled to arrive around 8 PM. The night before I had one of those nights that went so late it became early morning; I turned out my bedside light at 7 AM. Since I didn’t have to leave for the airport until after 7 PM, before I went to bed I turned off all the ringers on my phones so I could get my badly needed -- though fruitless -- beauty sleep. I forgot one phone however and sometime around 4 PM I heard ringing far off in the inner bowels of my condo. When I finally checked my voice mail, there were four messages. The first was from Laurie telling me her flight from Des Moines had been cancelled (a victim of Mesaba’s near-strike) and she was catching an earlier flight. Fortunately, not ALL the messages were from Laurie, but she WAS also message number 4, in which she said she was about to get on the plane and would call when she arrived. The distant ringing I heard was Laurie’s third call, announcing her arrival, a call that also went unanswered.

By now Laurie was beginning to wonder and worry about where I might be. I don’t know why she would assume “hospital” before thinking “I’ll bet she went to bed at 7 AM and turned off all her phones.” I did reach her on her cell and then gave her a couple of hours to get caffed up at the airport Starbucks, since applying my face and hair is a process that can't be rushed. Her life might have been simpler if I’d just been in the hospital.

I hope some of those stories amused, interested or enlightened you. If not, I guess you should have stopped back at the moment of silence. I’ll be back within the next 10 or so days, maybe more, maybe less. I was about to say “same bat time, same bat station,” but that wouldn’t be true. Sorry that I can’t be as consistent as Batman, but he being a bat and all, our sleep schedules must be similar.

I have to be up and out of the house at a “normal person” hour tomorrow so now I must go and hang upside down from my bedroom ceiling.

Saturday, January 3, 2004 1:40 AM CST

Very rarely have I posted to this site without sending you the obligatory email to shove you here. Fortunately, many of you have some trust issues and check the site regularly without threats, in the event that I sneaked in a posting or they’ve missed an email. THESE people were rewarded (?) for their efforts. For those of you who trust me to enlighten or warn you of postings, you missed out on my recent blip. Thankfully all you need to do is click on “Look at past journal entries” and all will once again be right in your worlds. [Go, go, or you’ll be out-of-the-loop on the subject of the next few paragraphs. But if you think you can handle that, go ahead, live dangerously.]

I reported to my doctor’s appointment last Wednesday (Dec. 24) with the throbbing boil still attached to my head. Upon inspection, Dr. W. decided that the wisest course of action would be to drain it to rid my body of the infection. (The usual term is “lancing a boil,” but he never actually referred to it this way which somehow made it seem much more serious.) He left the room and I heard him ask a nurse to get him the items needed for this procedure. I laughed out loud when I heard a nurse respond, “Good God doctor, what are doing in there?” I guess oncologist office visits don’t usually include surgical procedures.

He returned with a knife and lots of gauze-like materials and prepared to cut into the lump on my head. Having been through many painful procedures, I usually respond to warnings of pain or “discomfort” with a snort and “Oh, I’m sure I’ve been through worse than this.” I don’t know why I think I’m going to be immune to pain THIS time, since 97 times out of 100 I’m not. And this was no exception. His quarter inch incision felt like it was at least a foot long as the knife actually sliced through my scalp. For the next several minutes he drained the boil’s contents. (I was told it contained an impressive quantity of pus. It may not equal the amount of fluid expelled from my cats’ anal glands on a regular basis, but I think it was close.) A few minutes into the draining process I commented, “you know it’s not fair that I spent all this time growing this thing, and then YOU get the fun part.”

Apparently not everyone is as interested in their own body secretions as I am. He responded, “I’m NOT having fun.” Well, to each his own. Afterwards he taped me up with gauze and life has been on an uphill swing ever since. The painful, swollen protrusion quickly disappeared. The incision was closed up two days later. My 10-day antibiotic dose ended on Monday. I still have a small bump on my head, but it’s pretty innocuous and I can once again use my head for its favorite purpose: lying comfortably on a pillow.

My white blood counts at that Wednesday’s appointment allowed me to get chemo on Friday the 26th. My red blood counts on the other hand allowed me to get a new shot. They were close to being low enough to require a transfusion, so I was given a shot of Aranesp, which is supposed to bring them up again over a couple weeks time.

I went back for more chemo this Friday (Jan. 2) and my white blood count was low. After they see the low reading, they break the cells out further to see which parts of them are low. I failed that test too and was sent home chemo-less.

I mentioned to my nurses today that I’ve been experiencing exhaustion while engaging in fairly minor activities. On Wednesday I walked a block to Tom Thumb and by the time I made the return trip with my groceries I practically had to crawl through the front door. I was panting, my heart was beating wildly, and as I waited for an elevator I alternated between slumping backwards against the wall and forward in order to be lower to the ground in case of complete collapse. Even shorter walks leave me winded. Yesterday I was out of breath after a trip from the box office into the movie theater. I felt like I’d just run a 10k. (Not that I know what that would feel like, but I can imagine.)

When I first noticed this problem I attributed it to recovering from surgery and then the infection that invaded my body as a result of the boil. But with surgery a distant memory and the infection cleared up, I recalled my recent successful boil self-diagnosis and was certain I had this one figured out too: Congestive heart failure. Okay, this time I was wrong (probably). It seems that “shortness of breath” is a side effect of low red blood counts. They may call it “shortness of breath” but I think it needs a more descriptive name than that. Out of respect for people I actually know with congestive heart failure, I won’t steal that one. Maybe “seriously impaired breathing function”?

Wow. I did good. No major cancer atrocities, yet I was still able to write eight paragraphs on “The Boil, Part II” and a lack of a few red blood cells. I hope my next update suffers from similar material shortage and I can regale you with a story about a rash from my wig glue. No, I don’t actually have a rash from my wig glue, but we can all hope for one.

Saturday, December 20, 2003 1:57 AM CST

Excerpts from the Mayo Clinic Family Health Book (Second Edition):

“A boil is a local infection in one or more hair follicles and usually is caused by staphylococci.”

[Left out the paragraph on how the pus collects, pressure and pain increase and what it looks like before it bursts and drains. Aren’t you glad?]

“A boil usually will burst within two weeks. Any boil that persists longer might spread the infection to your bloodstream or internal organs. Internal staphylococcal infections, which are life-threatening, often start from skin infections.”

“A boil on or near your nose cheeks, forehead, or spine can spread even more rapidly to become a brain abscess or spinal abscess.”

So, guess what’s new with me?

I find no comfort in that last quote, since mine isn’t on my nose, cheeks, forehead or spine. IT’S ON MY HEAD! In case you missed what I’m implying here, my head is much closer to my brain than those other sites. But now that I think more about this I shouldn't really complain that I don't have a big red, swollen lump on my forehead, nose, or cheeks.

I started out this week sick, thinking I had a cold (which is kinda funny, because that’s usually not my first thought). Coincidentally Monday night I also started developing a painful sore on my head; I assumed it was just a wayward pimple attracted to my eternal youth. Tuesday morning I called my nurse with my list of complaints (I have fever, I don’t feel well, I have a sore on my head). My doctor called me back. He didn’t indicate to me that he knew what was going on, but simply prescribed an antibiotic that’s helpful for skin conditions. I may have been the only one in the dark, because it took me a few more days of fevers, chills, and exhaustion before I consulted a medical book late Thursday night and figured out that I didn’t have a cold AND a painful sore on my head, I was sick BECAUSE of the thing on my head. I started out researching "cysts" since at this point it grown beyond pimple proportions, and eventually found my way to "boils." The symptoms matched exactly and my self-diagnosis turned out to be accurate.

Of course the threat of low blood counts canceling Friday’s chemo went from being a threat to being a given, since it seems that all of my white blood cells have relocated to this aching lump on the back of my head in a feeble attempt at healing it. Next to WBC on my lab reports it usually has an “L” for low. Today it was “C” for “critical.” (Not "cute" like I thought.)

I left my nurse a message at 4:45 AM Friday morning that since I was going to be in for a blood draw on Friday, maybe a doctor could look at my head. I got in to see Lori, the nurse practitioner. After examining the offending aching, tender, swollen knob, her assumption was that the doctor would put me on IV antibiotics and the only question was whether they’d be given in-patient or out-patient. She left to go talk to the doctor while I mentally planned the logistics of going in the hospital: What to pack. What plans to cancel. (Which I’ve been canceling anyway, but being in the hospital makes it so much more legitimate.) Drive myself or call someone? (It’s always nice to have a car there so I can make a quick get-away.)

My own doctor not being in today proved to be lucky for me; the doctor that Lori consulted with was much less predictable, and nixed the idea of IV antibiotics and changed my oral antibiotic instead. (Note that the doctor never actually looked at me or my head.) I have strict instructions to call if my fevers aren’t better by Saturday. This being a weekend I won’t be at all surprised to spike a fever at about 2 AM Sunday morning. If I’d go to bed earlier it would be make life easier on both me and the doc on call.

Lori and I then moved on to the discussion of my dehydration and my ongoing confession to medical professionals that I don’t stay well hydrated. (My latest response to friends that chastise me for this is “I doubt that my tombstone will say ‘If only she had drunk more water.’” ) Lori took pity on the plight of the unmoist and offered me IV fluids. I always jump on these offers, because if I had my way that would be the only way I’d ever be hydrated. I don’t like water. I get no pleasure or satisfaction out of drinking it. If I take a bottle of water with me when I leave the house, when I come home six hours later the bottle is still half full. But Diet Dr. Pepper and Caribou Coffee Coolers must count for something.

It occurred to me after I’d left the clinic (fully hydrated) that all the discussion had been around how to treat my infection; I didn’t think to ask, and no one thought to tell me, how to treat the large protuberance on my head. One of the causes of boils is friction with clothing so I have to wonder if the wig and the fact that I wear it a lot is what brought me down. Now that I finally have hair that I’m willing to wear in public it would certainly be my luck to not be allowed to.

I called to find out who the oncologist on call is this weekend, but was only willing to talk to my own doctor or the doctor that was consulted today, and it was neither of them. I didn’t feel like going into the boil thing with a doctor that wasn’t already in the loop. Thank goodness for the Mayo Clinic Family Health Book. “Application of a warm tap-water compress to the boil for about 30 minutes every few hours will either cause it to regress and disappear or, more likely, to burst and drain much sooner.”


So, I have this great idea for a party…

Saturday, December 13, 2003 2:00 AM CST

TWENTY PERCENT OFF

Okay, now that I have Marna’s attention…

I received 20 percent off at chemo on Friday…20 percent less chemo that is. My blood counts have been spiraling downward over the past few weeks. I’d like to think that this is the cause of my huge malaise over the last couple of weeks. I’ve had very little interest in doing anything that doesn’t involve bed, the couch, the Internet and my refrigerator.

Last week my blood counts were at a number that was slightly below the threshold for giving chemo, but they gave it to me anyway (she said quite happily). This week the counts were even lower. A shout out to my doctor brought the response to lower my dosage 20 percent -- again viewed as good news from my perspective. But the nurse told me that this downward pattern means that when I come in next week I should probably expect to NOT receive chemo. I told her I prefer getting it over not getting it (since every ache, pain and twinge is no doubt a tumor engulfing a vital organ), but she said that giving my body a little chemo break wouldn’t hurt. Most of the time I find messages like this from a nurse calming, but my recent crankiness and stress has changed this viewpoint. My new stance: “Despite the fact that she knows cancer and cancer patients, she really has no idea know what it’s like to live with it day to day.”

If I haven’t spoken to you recently, you might want to thank me. I’ve pretty snarly, anti-social and intolerant. I think I’m snapping out of it though...which can only mean one thing: It’s chemo time and I’ll be sinking right back into it in a few days. In the meantime, I’m climbing through my very tiny window of opportunity and reserved Saturday as a day to go out and do something unselfish and holiday-like. My plan is to go over to Gavidae Common (a downtown Minneapolis mall-like structure smack dab in the middle of Holidazzle festivities), pull a bunch of Christmas wish cards off the “Giving Tree” and head over to Target and grant some Christmas wishes. I’ve been really ornery though, so it may take a lot of wish granting to make myself feel better. Yeah, I’ll probably buy myself something too, but the object is to get over myself for at least a couple of hours.

Based on past experience, it’s pretty amazing that I’ve made it through five weeks of treatments in a row without low blood counts necessitating an unexpected break. This might be a record. I should talk to the Cancer Center about starting a blood count incentive contest. We could have competitions between patients based on blood count levels and chemo dosage tolerance points. There’d be prizes, plaques, press releases, cash. I know, since every patient’s diagnosis and prognosis is different, the contest wouldn’t be pitting apples against apples. But who cares? The point is that I win.

No scans scheduled for the near future. Next chemo -- which probably will not happen -- is Fri., Dec. 19. I see my doctor on Wed., Dec. 24 and have another treatment scheduled for Fri., Dec. 26. I’ve been reserving Fridays as “chemo days,” but if you don’t already know this, “man plans, and God laughs.”

New discovery: Phantom hair. After I shower I still reach back to squeeze the water from the hair that’s no longer there.

Sunday, December 7, 2003 1:09 AM CST

Don’t be overly impressed with my boundless energy for writing lengthy prose. I wrote most of this late Friday before Friday’s Taxol/Carbo chemo combo coma has hit. Anyone who saw or talked to me a few weeks ago, knows for a fact that my energy does know bounds…uh, boundaries..boundatures…whatever.

THE CHEMO
On Friday I was back at the clinic for the two-drug treatment, which marks week one of my second three-week cycle. Lori, the nurse practitioner I met with confirmed for me that the two-drug combo IS rougher than just Taxol alone, so I’m not expecting to float through on a cloud of Reddy-Whip, but so far so good.

MRI RESULTS
Wednesday’s brain MRI brought good news for the most part. Of the three spots in my brain, one was two millimeters smaller, one had not changed, and one was one millimeter larger. As my dad said, "you're a millimeter ahead." What makes this news especially good it that it does not impact my current chemo regimen. Worse news may have meant stopping the chemo and going back to brain radiation. In more good news, the pains that I had in my liver before starting this chemo are gone, so I can’t help but be optimistic that the chemo might actually be working. And just maybe the brain is stealing a little beer from the party.

Though I had the MRI on Wednesday, they didn't have the results when I got to my appointment Friday and I had to wait around before any decisions could be made to go ahead with chemo or not. Two days is a normal amount of time to have between tests and getting the results, so I fully expected that the MRI results would be waiting for me upon arrival, as usual. I didn’t imagine having to endure the appointment with Lori with no news, and then have sit around in the lobby waiting. (Though there have been a plethora of adventures over the past five plus years that I didn’t imagine; you’d think I’d get used to it.) I wasn't nearly as stressed out waiting as I should have been. I'd like to think that I sensed that it wasn't going to be bad news, and I was mostly right. Not surprisingly, lately I’ve been hypersensitive to aches and pains in my head (some real, some imagined, some real but bordering on paranoid), but they hadn't been on the side of the head where the tumor that actually grew resides. I’m sure that’ll change now.

VISTORS AND DESSERTS
On Thursday my friend Helen arrived from D.C. She was a pleasant chemo companion and is very helpful to have lying around the house, and she seems to be getting a little rest as well. Our friends Dick and Mark who live in Davenport, IA left me a message Friday afternoon that they had accidentally made way too much pumpkin bread and would be over tonight to drop some off. After a brief 250 mile jaunt, they showed up on my doorstep at about 10:30 p.m. Friday night, fully aware I would be up and in the mood for pumpkin bread. When they called from the lobby I told them to just leave the pumpkin bread in the management office and have a nice trip home. They were not deterred, which turned out to be a good thing because they had also brought homemade banana bars. I added an Irish cream cake (which Helen and I had already delved into earlier) that came with a huge, tasty Sabbath meal that a Bet Shalom Caring Community member made and delivered to me on Friday, I put out some of my famous toffee that was stashed in the freezer, and the four of us had a late-night dessert feeding frenzy. Helen isn’t normally awake shoveling in desserts at such an hour, but she remained relatively alert and in good humor…until her sugar high wore off. On the other hand I have two stomachs: a main course stomach that tolerates varying levels of fullness and a dessert stomach that needs refilling every couple hours, so Dick and Mark’s arrival was well-timed.

DIGGIN’ THE WIG?
Every time I come home from wearing my new wig out somewhere I swear I'm not going to wear it again, but I keep wearing it. What can I say? I like having hair on my head. I only paid $130 for it, but it supposedly retails for $800. Kit, who heads up the program that provided it (“Wigs without Worry”), indicated that there is a big difference between $800 wigs and less expensive wigs, and I guess I can tell too, since I like it better than others. Though it might just be that I imagine it looks better just because I THINK it’s an $800 wig. I can be highly suggestible. I am worried that once I wash it that it won’t fall back in place, so the hairspray and gel build-up may get pretty high before I have the nerve to do something about it.

Last night I did an intense Internet search and bought special wig shampoo and some roll-on adhesive, which I hope will make it sit more comfortably on my head. Like previous wigs, it tends to “ride up” and I spend a lot of time tugging it back down. If I’m trying to look like I’m not wearing a wig, I really need to eliminate the ritual of shifting the hair around on my head every five minutes.

SPINE RECHECK
I had a recheck with my neurosurgeon on Monday. I’ve been self-treating an infection in my incision site, and my skin had an ugly reaction to the tape I used to attach the gauze. (I'm allergic to most bandaging tape, one of very few medical sidelights I’ve never shared with you before). I was put on antibiotics after I confessed the infection to my chemo nurse last week,

Before Dr, Larkins looked at my neck I wanted to explain to him what he was going to see back there, but the more I explained, the more impatient he became. I responded to him that this was the price he had to pay for all the time he spent looking at my tongue while I was in the hospital. Fortunately he found that amusing, probably because I made a good point. It may not be good logic, but it’s definitely MY logic, which can be hard to argue with.

He blamed the infection on a piece of suture that was still in the incision, which he removed. He also again brought up the unfortunate circumstances surrounding how I learned of my brain lesions from the doctor who blurted it out assuming I already knew about them. He apologized again and said it wasn't how either he or the other doctor (a friend of his) operates. I said I understood that the other doctor hadn't noticed the timing between the MRI (Fri. p.m.) with his myelogram (Mon. a.m.), but in hindsight I wish I'd suggested that his doctor friend should have been the one apologizing to me, rather than subjecting me to a roomful of stunned silence after he realized his blunder. But I wasn't thinking coherently enough to offer up that response; I'd already been subjected to a temp nurse that had terrible body odor and was coughing all over me. Bleah. She was astute enough to leave and wash her hands before continuing her tasks, but she could have used a full shower.

NURSE CRABBY
I generally have good relationships with the nurses at the clinic. I’m kind to them, they’re kind to me and all in all it’s a win/win situation for everyone. On Friday when I saw Lori instead of my doctor, her nurse -- who I’ve met once or twice before, but whose name I have conveniently forgotten…but then again she didn’t seem to remember me either, which is rather mind-boggling -- is part of the “team” package. During my appointment with Lori I asked her about reducing the dose of the steroid that I’ve been taking every morning for the past few weeks. After the appointment I was sent back to the lobby to await word on my MRI results and subsequent treatment. While I waited, Lori called Dr. W. to get the various questions answered. Eventually nurse whatshername came out to tell me that I was going ahead with chemo, that Lori would come to the treatment room to discuss the MRI results, and that on Monday I should start taking the steroid every other day.

Since I take such pride in my logical mind, my next question seemed like a given: “So does that mean that I take it Monday and not take it Tuesday, or NOT take it Monday and take it Tuesday? When exactly does ‘every other day’ start?”

She looked at me like I was speaking in my native Ubenglubish (which would actually have sounded like “Subo duboes thubat mubean thubat ubi tubake ubit Munondubay unand nubot tubakie upbi Tubuesdubay, ubor NUBOT tubake ubit Mubondubay unand tubake ubit Tubuesdubay? Whuben ubexubactubly duboes ‘ubevuberuby ubotheruber dubay’ stubart?)

It seemed like a perfectly reasonable question (even in Ubenglubish), yet she looked aggravated and annoyed. “Hey,” I responded, “I’m a writer and studied communications, I think this issue demands clarity.” She was neither amused nor impressed by my credentials. Seeing she didn’t get it, I repeated the question with what I felt was even greater logic. “So, I’m supposed to take it every other day starting Monday,” I repeated. “What day do I start NOT taking it, Monday or Tuesday?” She was clearly exasperated, wouldn’t even attempt an answer, and stalked off unburdened by the fact that she had no sense of humor. So I saved the question for Lori when she came back to see me. I not only got an answer, she had the good sense to comprehend that it was a perfectly logical question. Not that it didn’t slightly befuddle her (which isn’t my intent, but simply a bonus). C’mon. It wasn’t like they said “start taking it every other day immediately.” They said “start taking it every other day on Monday.” What would YOU do? Take it Monday or not take it Monday? See, I KNEW you’d see my point.

DAD’S CORNER
On December 4th my dad celebrated his 80th birthday. I don't know how someone as young as me could have an 80-year-old father. It seems inexplicable, but it is medically possible. He spent his big day attending a Continuing Legal Education seminar in Des Moines. Apparently these classes are required in order to go to the office every day, open mail, go out for coffee, and flirt with the secretaries. I think I prefer the educational requirements for journalism majors on long-term disability: Dr. Phil, People Magazine, and TV Guide.


NEW TO THE SITE, ME-TUNES:
Thank you to my friend Keith M. who generously offered up a corner of his Web site to host some of my music clips. You should be able to click each link and within a few moments hear the dulcet tones of Dale Wolf live from the Algonquin Lounge, Casino & Bowling Alley in Hinckley, MN. Okay....recorded at Wild Sound Studios in N.E. Minneapolis, which is almost as glamorous.

You'll find the song links at the bottom of the page directly below the links to the guest book and photo allbum. They are MP3 files and if you can’t make ‘em work, I have no idea how to help you, so don’t bother telling me about it because I’m very tired and easily annoyed. (And yes, guest book entries count as "telling me about it.") Of course all compliments will be accepted graciously.

The songs are raw "unproduced" footage from my original recording sessions.The links are to MP3 files that are 4 mb, 3 mb, and 3 mb in length, respectively. It may take a minute after clicking on the link before the song starts playing. Alternatively, you can right click on each link and select "Save Target As" (or, if you're smart enough to use a Mac, "Download Link to Disk") from the pop-up menu, so you can freely play them over and over and over again. (It might be helpful to make sure your speaker volume is on as well, but that's a personal preference.)

That's me playing the flute solo on "Smile." (Yes, it seems one can play the flute and sing at the same time!) My piano player is the incredibly talented and generous Gregory Theisen. I plan (what an hilarious word) to complete the CD this week and then I will move forward on the production process. My cover graphic designer has gone MIA, but since lately I'm only able to focus on one drama at a time, his disappearance fits nicely into my schedule.

If you’re feeling particularly adventurous, you will also find a new photo and a new cartoon in the photo album. Yes, I’ve been busy keeping this site entertaining just for you. Like I say over and over again – as if you need to be reminded -- I’m a giver.

Monday, November 23, 2003 3:20 AM CST

Well, it’s confirmed. Losing one’s hair for the third time is just as horrifying as it was the first time. Maybe more so, because this time I know exactly how much I hate it. The first time it was at least a novelty. The novelty has definitely worn off. I experienced the familiar loosening of the follicles a couple of days ago and then did my usual “maybe if I don’t stir it up it’ll stay put.” But it becomes impossible to ignore when hair is falling everywhere I look. Today I had to give in to it; as I slumped on the couch in my daily semi-conscious state, I moved the wastebasket alongside me and pulled my curls out in fistfuls. Later I moved into the shower with a comb and scissors, another wastebasket positioned shower side.

Unless you’ve experienced it, you have no idea what a huge mess it is as it comes out, especially in the shower where, rather than wash innocently down the drain, huge dark, wet clumps cling to the body. Exhausted from today’s hair pulling expedition, which is the most exercise I’ve gotten in weeks, I sat on the floor of the shower for 20 minutes wishing the shower spray to finish the job, but of course it didn’t. Despite the massive quantities of hair that have filled my wastebaskets to the brim, enough still holds fast to my head to make sure I look exceptionally God-awful.

Fifteen months ago all my hats went into a Rubbermaid container that’s been hiding under a giant stuffed bear in my bedroom. I haven’t been able to bring myself to pull out the tub and face them again. (I also hear it’s dangerous to disturb bears when they’re hibernating.) I did order a wig last week and hold out a slight hope that I will like it better than I expect to. This one is the most expensive one yet: part synthetic, part human hair. The hair is attached to a mesh so that one’s scalp shows through when the hair is parted. Despite all the good things about it, my problem with wigs is always that they still ain’t my hair. But it’s obvious I’m feeling a bit down and negative today, so I’ll try to reserve my rejection for later in the week when I’m feeling better.

I somehow managed to overcome the magnetic force that’s been keeping me in a prone position 23 hours and 55 minutes a day, and attempted to plod into the kitchen to bake my famous mandel bread. I recently won a pink KitchenAid mixer at a silent auction benefiting breast cancer, and have been anticipating a time I would feel energetic enough to use it. Since I don’t known if I can wait that long, I decided to use it today. It’s difficult to describe how physically depleted I feel, but perhaps it will help if you can picture my daylong wrestling match with the mixer as I unsuccessfully tried to remove the flat beater and replace it with the dough hook. Despite screaming, crying, and stomping, I could not get the damn beater off the machine. After each attempt I would collapse on the couch for about an hour and then return to the kitchen to give it another go. Finally, at 10:30 tonight, unwilling to let the mixer win, I called Marna, who acts as my help line for a variety of topics. (Emphasis on the words “help LINE.” She stubbornly refused to drive 20 miles to remove the beater for me.) By this time I had moved the mixer to the kitchen floor, since I knew I’d have the advantage in any competition that involves sitting. Marna may think she’s responsible for talking me through to my ultimate success, but I think it had more to do with gravity. Utterly exhausted by the strains of the day, I laid down where I was already sitting on the kitchen floor and rested there for another 10 minutes before I was able to stand up and put the mixer back on the counter.

After I worked this hard to accomplish something, there was no doubt in my mind that the mandel bread would be a huge disaster. Surprisingly it turned out great, despite several wrong turns: my very unscientific method of measuring butter, getting a migraine trying to figure out how many cups are in a pound of butter, deciding by sight that I was missing a cup of flour, flinging pans in and out of the oven with no regard for the kitchen timer, and having to stop and rest my head on the counter at least eight times because my neck is still a little unwilling to support my head for very long.

My good friend Laurie M.’s mother lost her battle with breast cancer this week. I “wrote” a great tribute to her in my head last night, and can’t remember any of it today. I could blame it on the fact that my power of memory left with my hair, but we all know that the memory was missing in action long before now. Rather than stumbling through words that aren’t exactly what I had in mind, I will simply share that “Mom” was a trooper, she lived a life of caring and giving that she continued to the very end, and she raised three extraordinary children.

I spoke to another great trooper tonight: Aunt Betty, wife of my Uncle Jim who we also lost to cancer in July. Betty’s wonderful attitude, spunk and spirit were almost enough to shake me out of my doldrums. Almost.

Tuesday, November 18, 2003 4:47 PM CST

Word of the day, week, month: Blechy. I feel blechy.

I started my new chemo last Thursday, made a feeble attempt at socializing with my Ceridian “not even close to a book club” on Friday night, and haven’t poked my nose out of the house since. I’m exhausted, sick, sleepless, periodically in pain and am overall under the weather in a way I can only describe as blechy.

People seem to need to assign blame to whatever is making me sick, but I think it's impossible to pin my problems on one thing. Chemotherapy can knock a person pretty flat, at least it has often had that effect on me, and this is a new combination of drugs, each of which might be plenty bad on its own. Then there’s that spine surgery thing three weeks ago that may still be impacting my bouncibility. And let's not forget that huge issue that no one wants to outwardly acknowledge, but is constantly preying on me and my lungs, liver and brain, that cancer itself is responsible for my utter malaise. If these three possibilities aren’t enough alone or together, then add a bit of mental exhaustion to the mix; most days I think that the fact that I plod from bed to the couch is deserving of a purple heart. And if I haven’t spelled out my issues clearly enough yet, let me share the ongoing question that constantly hangs over me: “Will I ever feel better again? This is when I try to go back to the conversation with my oncologist a few months back when he said that he wouldn’t offer treatments if he didn’t think they were going to work.

Any improvement to my blechiness seems microscopic, though the fact that I’m semi-upright (well, at about a 45 degree incline) and typing this whiny entry is a good sign. Thursday I hope to make my week's debut outside my condo. I rescheduled last week’s wig appointment for Thursday morning, and then Thursday afternoon it’s chemo time again. This week it’ll be Taxol alone (as opposed to last week’s Taxol/Carboplatin combo cocktail). If I plan for it to knock me into a semi-conscious state this time, maybe I’ll be pleasantly surprised. And yes, cranky, independent me has lined up people to chauffeur me to all these appointments.

Saturday night I had a terrible bout of chest pains at 2 a.m. for about an hour, and I had no idea what to do about them. I'd had them once before a few weeks ago. Marna asked me to think if the two nights I had chest pains had anything in common and I replied "Yes, YOU fed me both nights." So I think I've concluded that my sister is trying to poison me. I should probably mention to her that now that I'm back on chemo, she's being redundant.

Huge thanks to the many helpful friends and sisters who have enthusiastically [?] dropped by for cat box scooping, “carpet” cleaning, garbage emptying, laundry, feeding, and conversation. I am happy to say that I cannot count “neglect” among my legions of complaints, And don’t worry if you haven’t had a turn yet…I promise there’s enough cat poop in the box and sweaty t-shirts in my laundry basket to go around.

***On Sunday, November 23, 2003 - 2am-2:30am CDT- CaringBridge will not be available. This is due to a Web hosting switch upgrade. *** I can see now that I've posted this important message, that I am probably the only person here who will find this to be a problem.

Wednesday, November 12, 2003 3:33 PM CST

Breaking News

I left the word “bad” out of the middle of the header, because I’m currently feeling a little mixed about today’s turn of events. The news is definitely bad all the way around, but I’m working on mustering up my massive powers of denial. They’ve been absent the last couple of weeks, as have my coping skills, general physical strength and my usual “exceptional brain chemistry” (my friend Vik’s term). Between recovering from surgery, starting daily brain radiation treatments, Monday’s CT scan and the pains that necessitated it, I’ve been totally wrung out. Yesterday as they bolted me and my mask to the radiation table, shut the two-foot thick door and I lied there listening to the lengthy buzz of radiation to my head, I had a somewhat sick hope that my CT scan results would be bad enough to make them stop the brain radiation.

Why do you suppose that after 43 three years of wishes, this would be the dream that finally came true? I met with my oncologist this morning and he shared the news that the CT scan showed significant growth to the tumors in my liver since my scan a month ago. The tumors in my lungs were also larger. Dr. W. believes that my lack of energy, my pain and my inability to bounce back from my recent adventures are all connected to the growth in my liver. Once again I learn that having my pain validated isn’t nearly as much fun as I imagined.

All radiation treatments have been stopped and I start weekly chemotherapy tomorrow (Thursday). My schedule is as follows: Week one: Carboplatin and Taxol; week two: Taxol; week three: Taxol, then repeat. After three cycles (nine weeks) -- if I haven’t been felled by any crises in between -- they’ll rescan and see how it’s working. They are going to give me a brain MRI in three weeks to see if there are any changes there, since basically we’re abandoning the brain right now to concentrate on my liver. (And they don’t do radiation and chemotherapy at the same time.) Unfortunately brain metastases is not known to be sensitive to chemotherapy because of the “blood barrier,” but the doctor said we can have a little hope that the chemotherapy could have a positive affect on those spots as well.

I’m raring to go for the start of tomorrow’s chemotherapy regimen. Well, as “raring” as one can be who is stuck inside the couch as far as I can be, curled up in the fetal position, and whimpering, I am comfortable with pointing some poisons directly into my veins again. I will still lose my hair, though I had to reschedule my appointment with the wig guy because of chemo.

If feels like this update should be much longer, but I can’t think of much else to add. I don’t have a clue why I feel slightly LESS depressed at the moment than I’ve been in over a week, when I should probably be MORE depressed. Probably because my brain doesn’t hurt and my liver does, and I like the idea of responding quickly and directly to the “pain of the moment.”

I was hoping this next update would be less newsworthy so I could give proper acknowledgement to my sister Caryn and friend Kristi who stepped up to the plate and handled some disgusting tasks relating to my cat. This came after my “tantrum of the day” which that day consisted of “people who want to help generally prefer to do what THEY WANT to do, as opposed to what I NEED them to do.” And what was needed that day was some icky cat maintenance. Sure, I guilted them into it, but my obnoxious directness is constantly available to keep you educated. If I don’t point out the flaws of the world, who else will do it? Besides Al Franken, Rush Limbaugh, and Michael Moore, there’s only me. And my Oxycontin supply is legal.

I’ve been extremely fortunate to have become involved with the new Caring Community committee at my new synagogue. They have been a wonderfully supportive group of people who need to know something: These updates used to be funny. I swear. I’m sorry you didn’t get involved in my saga when I found more amusement in it. You people have terrible timing. (I may be down and out, but I’lll never lose my talent for pointing fingers.)

Thursday, November 6, 2003 7:46 PM CST

My last posting ended with “So far I seem to be faring better than expected, so I’m optimistic that my recovery will be swift and I will be back to insulting you in person soon.”

I was being a little overly optimistic. I’ve struggled this week with dizziness, hot flashes, no energy, and overall yuckiness. I see spots when I get up and try to do anything more difficult than standing up and sit right down again to avoid fainting. I’ve had “babysitters” every night until last night. I’ve been depressed and impatient with feeling sick but learned at the doctor’s office today that I had major surgery last week and may need a month to recover. Who knew? To think I’m not as “bounce-backable” than I thought is a new concept that I’m still grasping.

As I’ve lied on the couch alternating between groaning, pouting, sweating, and sobbing [uh oh,,,I just spent an hour on the phone and I have absolutely no idea where I was going with this paragraph]. It’s possible I was going to educate you about steroids. My doctors think it’s likely that part of the reason I feel so awful is steroid withdrawal. Steroids are nasty drugs (my opinion) that are among those that can’t be stopped cold turkey. They pumped me full of steroids following surgery, then sent me home on a tapering dose, which ended Tuesday. Yesterday after hearing my travails, my oncologist put me back on a small steroid dose, which I didn’t completely understand at the time. Today my nurse Jean explained that the tapering dose isn’t effective for all people and putting me back on a small dose (which I started this morning) may help me feel better.

Another complaint I’ve had is nagging pain in my chest. Well, not exactly my chest but I can’t quite describe their location. This earned me a new CT scan this coming Monday. I’m happy to be getting it checked and hoping they’re simply a side effect of lying in the same position for six days straight.

The news on the tumor removed from my spine was good. The neurosurgeon was right that what he removed was dead. The assumption I believe is that the radiation had worked on it. But unfortunately it hadn’t shrunk to any level that relieved my symptoms, so I guess it needed to go anyway. (That’s what I need to think after all I’ve just put myself through anyway!)

Caretaker extraordinaire Laurie left on Tuesday evening. I called in another caretaking force in my life, Eleven Who Care Award Winner Jane Baxter who stayed here Tuesday night, covered my incision before I showered, and listened carefully for any loud “thunks” that would indicate I passed out. We discussed her going to bed with her cell phone so I could reach her in MY GUEST ROOM during the night. I told her that there was no way I’d come up with her cell phone number if I needed it and she would just have to rely on my loud voice.

Wednesday I spent my first night alone since I’ve been home from the hospital. It was a dicey decision, but overall I was comfortable with it and eager to try to get back to a semi-normal routine. Don’t anyone yell at me and tell me how I shouldn’t have done that and that you would have been happy to stay here. I have two responses to that: 1) You probably don’t really want to stay here, so don’t bother saying that you do and 2) I live alone by choice. I haven’t done roommates since college. I LIKE living alone. I like my space, my routine, and feeding myself. Probably many of you do too. (Though having someone supply me with a steady stream of ice chips isn’t all bad.) Put yourself in my shoes; it’s not fun to require a sitter. At least not once you’re over the age of 11.

I was out at appointments today from 10 until 3 and managed pretty well, so I’m hopeful the dizzy spells are coming to an end. I’ve barely gotten off the couch since I’ve been home to test this yet. But yesterday I made it about a quarter of the way to the pharmacy before I collapsed in a chair and made my friend and chauffeur Mary H. hike the rest of the way solo. Oh, sure, it doesn’t sound like a big deal, but Mary has a bad cold.

Today was a big day. Cousin Caryn Z. picked me up around 10ish and drove me to Methodist. I first met with my radiation oncologist and was given the rundown on radiation therapy to my brain which starts this coming Monday. It will last for three weeks. My last treatment is the day after Thanksgiving. The biggest side effects are fatigue and permanent hair loss. There is also a chance of burning to my scalp, forehead and ears, but this isn’t typically severe in most patients.

After this informational appointment I had my incision checked by my neurosurgeon’s nurse. It looked good enough that my stitches were removed! I’ve had a little pain over the last couple days, but feel much better without the stitches. The stitches were swapped for paper steri-strips and I can now get myself fully wet while bathing and, almost as huge, I can DRIVE. I don’t feel well enough to go anywhere, but it’s good to know that I l can legally make a break for it if I choose to.

The Radiology Department came up to retrieve me from neurology, anxious to prep me for my upcoming treatments. I spent about half an hour lying on a table wearing a hair net, being x-rayed, getting drawn on with a green Sharpie, and having my face covered with warm plastic mesh to make the mask that I’ll wear for treatments. They had to perform the mask process twice because the first one dried too quickly. It could be described as a claustrophobic experience, except that I can see and breathe through the mask. I looked very attractive afterwards…my hair was matted to my head, I had green magic marker lines on my forehead, chin and next to each eye, my face was imprinted with the mesh design, and two wet maskings lifted off most of my meticulously drawn on eyebrows.

Yesterday was among my worst days yet. I felt lousy, was anticipating today’s preparation for radiation, and am barely able to get my arms around the fact that not only am I about to get radiation to the brain, but that I’m going to lose my hair for a third time…and not get it back again. One thing that’s made my most recent cancer adventures bearable is that I’m able to go out in the world and not look like a cancer patient. You don't know how much easier it is to garner up energy to do normal things when you look normal. Beyond not liking how you look, there’s always the decision of “what do I wear on my head,” every time I get dressed and leave the house.

The last two times I was bald I bought wigs that I refused to wear. The first time I had two that I hated and never, ever put on my head. The second time I had one that looked much like my hair, cost $400, still hated, and rarely wore. (My own hair is low-maintenance which was not true of the wig. I figure that the ONLY advantage to not having hair is to not have to spend time fussing with it, so a difficult-to-maintain wig took away the only plus to being bald.)

I’m going to try one more time and have made an appointment with a guy who was recommended to me. I’ve decided that the women that helped me previously weren’t too successful, so maybe a man will be better. Whether he achieves success or not doesn’t change the fact that wigs are hot and itchy. The odds are in the high 90s that I won’t like the next one either.

Now that I’ve brought the mood level down, I’ll give you my best Hospital Roommate Story: The nurses ask you to rate your pain on a scale of one to 10, 10 being the worse pain imaginable. They asked my roommate Deb her pain level and she moaned, “Twelve…I’m a 12. I can’t stand it, I need more pain pills!” Five minutes later the nurses couldn’t find her. She was outside taking a cigarette break.

And the top “Inappropriate Hospital Chaplain” story: I described to him what had happened to my tongue. He nodded sympathetically and responded, “Oh, I thought it got that way from too much French kissing.”

Speaking of my tongue, I suggested to the neurosurgery nurse today that some of it was missing. She examined it, noted how much better it was, and commented “Well, it looks like it was chewed on pretty good.” My three-leaf clover tongue trick is still painful, but I expect to make a full recovery.

I’m exhausted. I’m appointmented out, talked out, typed out, and need to more fully concentrate on Survivor. A couple FYIs: 1) With help from Laurie (who’s surprisingly bossy in a subtle way) I’ve managed to shift my schedule -- at least for now -- and have actually been going to bed between 12 and one (that’s AM). Of course this is pretty easy to do after tossing back a couple of pain pills and a couple of sleeping pills with red wine and vodka (just kidding about the vodka). 2) I have a terrible memory and have no idea what #2 is, and 3) A crab warning: Just because I sound normal, type strongly, and currently look pretty darn fabulous, doesn’t mean I feel well!

Sunday, November 2, 2003 10:22 PM CST

This is my second entry since getting home on Thursday. So an even bigger question than "How am I?" is "How behind are you?"

Here's how I am as of Sunday P.M.: I hurt. I'm not perky (no matter how you think I sound). I'm constantly hot and sweaty. I'm groggy from pain pills (when I take them to not hurt). And I'm a little crabby, in case you couldn't tell. My pain IS improving; the shoulder blade thing has lessened but the incision in my neck (which is about 6" long) still cries out on a regular basis. I'm trying to remember to take pain pills before I actually need them, because they seem to work better that way. My tongue is still black & blue, but improving. As it heals I'm becoming more and more convinced that part of it is missing.

Here's what else is going on:
My friend Laurie is here from L.A. until Tuesday and is responding to my every command. Rumor has it that my sister Caryn may show up later this week, but I haven't talked to her to confirm this.

I have a horrendously smelly cat who appears to be having some "elimination" problems. He's not much fun to cuddle and I've enlisted Vik to take him to the vet tomorrow. [Monday update: Laurie braved the snow and took Mudd to the vet. He has been shaved, depooped and is operational again.]

Here's what I need: A ride to Park Nicollet for a 2:00 appointment Friday. I've already reserved drivers for my Wednesday and Thursday appointments. Let me know if you can volunteer. [Monday update: My Friday ride has been found. I'll put any other interested parties on a waiting list.] Thanks!
That's all for now.

Friday, October 31, 2003 0:29 AM CST

This is Dale. Remember me? It feels like it’s been so long, but it’s actually been less time than I usually have between postings. If you’re just now checking this Web site because you’re still sitting around waiting for an email notifying you of a new posting, you’re a little behind on some significant info. Marna’s updates have to be posted without email proddings, since the e-Dale group address list is in my email program, not hers. I guess I should have explained to you prior to my hospital stay that Marna would simply be posting updates to my Caring Bridge site, NOT sending you email proddings to help you get here. There WILL periodically be unprodded postings to this site; on some occasions you might just want to stop by here all by yourself.

And as long as I’m possibly offending you by implying that you some of you are inept at checking this Web site, I’ll apologize to any hospital callers/phoners that I may have not so inadvertently been rude to. Marna’s suggestions to not call were accurate, and I was not too pleasant to callers. This was my first hospital visit with roommates, which added to an already stressful situation. Despite my offer to pay for a single room I was informed that even if my name had been “Pohlad” I wouldn’t have gotten one. But I gotta admit, Carl was the best of my three roommates.

Enough of the reader criticism portion of today’s update, onto ME! But I’m kinda tuckered out from subtly pointing out your flaws, so I’m going to be brief with the rest of this.

I was discharged today. I was free to go home after about 10 AM, but passed out in the hallway after my shower and, with the help of pain pills, ended up snoozing my way through the morning and leaving at about 2.

The shower was one of the nicest showers I’ve had in awhile, finally giving me the chance to wash dried blood and various ointments out of my hair. The “evoked potentials” that monitored my spine during surgery attached their equipment to my scalp, which apparently was literally attached to my scalp in four areas. So I enjoyed my shower, but was overwhelmed by pain as I was drying off. Once out of the steamy shower room, I made it a few paces down the hallway before collapsing. My student nurse (it was only her second day working the hospital floor with actual patients, though I haven’t been actually very patient) was nearby, and of course a few other nurses came to my aid. It seems I had my eyes open, but was non-responsive. They finally gathered me into a wheel chair, got me back to bed, and fed me some pain pills. This pretty much ruined my plans to get dressed, dot on some makeup and blow that popsicle stand.

My neck mostly feels stiff with periods of burning pain, but my worse problem is horrendous episodes of burning pain in my left shoulder blade that completely paralyze me. I didn’t get much help from nurses with this, and they were pretty stingy with pain pills all-around, so I may have to place a call tomorrow to find out if this is a normal aftereffect of my kind of surgery,

I’m not feeling up to sharing the details of my hospital adventures quite yet, so you’re going to have to wait for stories of the inordinate interest doctors had in my tongue, my drug-addicted roommate, my sobbing roommate, and the improper advances I received from the hospital chaplain. Oh, and there's the PRE-hospital story of my parents car accident on their way to Minneapolis.

It is great to be home. Someone left a message on my voice mail today that said that “a hospital is no place to recuperate,” and I enthusiastically have to agree. Marna is staying with me Thursday and Friday night, my parents are in town until Saturday and my friend Laurie is coming from L. A. on Saturday and staying until Tuesday. Marna and I were just discussing what her actual job responsibilities are while she's here and didn't come to any definitive conclusions. Oh yeah, there's that covering my incision thing before I shower, but I thought that was a given. So far the only task on her list is to check and make sure I'm breathing before she leaves for work in the morning.

Let me repeat that I may not be very good at returning calls these days -- this pain and recuperation thing is quite exhausting -- but I do truly appreciate your kindness and support.

I’m waiting to hear about the pathology of the tumor that was removed. Next week I see my oncologist on Wednesday (I gotta be there at 8:50 and I need a ride…hint, hint) and on Thursday I have my incision checked and visit back with the radiology oncologist, possibly to be prepped to start radiation the following week. The neurosurgeon was noncommittal about how long I wouldn’t be able to drive, but implied that it might be less than two weeks. I had also been told that I wasn’t to lift more than 10 pounds for four weeks, and that may be a time period that is lessened as well, depending on my progress. So far I seem to be faring better than expected, so I’m optimistic that my recovery will be swift and I will be back to insulting you in person soon.

Tuesday, October 28, 2003 8:40 PM CST

Hi, it’s me Marna. But before I update Dale's condition, she was emphatic in making sure I tell all you well-wishers that she does not want anyone to drop by the hospital. She expects to be sedated, resting and uncomfortable and not her normal exuberant (and cosmetically enhanced) self! She does not expect to be up to company in the hospital. In fact, once she is well enough to deal with company, they will send her home. So she implores that you call the first before just dropping by because even in her potentially drugged stupor she is worrying about having to be rude and perhaps kick someone out of her room! On the other hand, she doesn't really want to bother with phone calls, so you all lose either way! My suggestion is you call the 6th floor nurses' station (that's Methodist Hospital, in case you didn't know) and leave her a message. Then she can call you back if she feels like it, but you shouldn't be offended if she doesn't call.

Now for the update. Surgery went well, but for unexplained reasons, didn't start until 9:00 a.m. and ended at around 11:00. The surgeon told us that the tumor he successfully removed appeared to be "dead", that is, it was no longer growing. We surmise the radiation (or chemo) killed it but that it failed to shrink, so she was still having symptoms. Her neurosurgeon thinks she should start the brain radiation immediately, however her radiation oncologist will likely have the final say on this.

She got to her room around 1:45 (also unexplained as we were told it would take about an hour). When we found her there getting hooked up to her equipment and meds, to my surprise Dale was very alert and exuberant and didn't kick my parents and me out of her room until nearly 5:30! She claimed to feel little or no pain. She saaid she just had a very stiff neck. However, shortly after she was settled in she asked me to look at her tongue, claiming it was painful. I looked and saw that it was almost black, but actually a dark purpley-blue and appeared to be severely bruised. It was startling enough that I brought her a mirror. (Her father in a rare moment of humor decided she was part Chow dog.) Her nurses were concerned and had her doctor's office come take a look. They sent the anesthesiologist up to see her and he confessed he knew her tongue had been bruised during the procedure, but he wasn't sure exactly when. He surmised that they had a tube down her throat and bite blockers in her mouth and then prodded her jaw to check for neurological function, which may have dislodged something causing her tongue to get caught. He indicated her mouth was a pretty small place for all the equipment. Naturally, I couldn't let that "small mouth" comment go - one of the reasons Dale did not want me visiting. Anyway, ice chips and an anti-inflammatory were prescribed for the tongue.

There is no more information about when she is likely to be released. She will probably lose her catheter and her morphine pump (which she hadn't used too much) and start walking around tomorrow.

Unfortunately, as much as she lobbied for a private room, she has a roommate. This makes Dale more anxious than ever to be released. I'll let her tell you some roommate stories, but suffice it to say, in the few moments I was around it sounded like things could get interesting. It was especially cruel when her roommate's family brought in Krispy Kremes.

Wednesday, October 22, 2003 5:39 PM CDT

If you’re looking to be entertained and/or amused, don’t bother looking here. The last couple of days have been a whirlwind of emotion, and there really is no light side. My moods since Monday have ranged from low to rock bottom, including times when I can barely put one foot in front of the other to move forward.

In preparation for my surgery -- which was rescheduled for Tues., Oct 28 -- I had an MRI of the brain and a myelogram. The MRI was last Friday at 8 p.m. and the myelogram was this past Monday morning with a 7 a.m. check-in time. For the myelogram they withdraw spinal fluid to analyze and then inject dye into the spine and take x-rays. Both the MRI and myelogram are intended to give the neurosurgeon a complete picture of my spine before he cuts into me on Tuesday.

Sandy pulled up at my curb at 6:30 AM Monday to drive me to Methodist Hospital where I reported to DOSA (Day of Surgery Arrival). There I changed into hospital clothes, had an IV inserted, had my vitals checked and eventually was transported to radiology. I was given a Valium, they took some initial x-rays, rubbed Betadyne all over my back, and then the radiologist came in.

He introduced himself and began talking to me about my cancer in the area of my spine. Besides the tumor that was going to be operated on, I mentioned that there were also some spots in my lower back. Then he added, “and then there are the brain lesions.”

I can’t recall for certain, but I believe I responded “brain lesions?” and he must have repeated it. I then replied, “I wasn’t aware of those.” An uncomfortable silence followed in which he was most likely thinking “oops.” He hadn't noted that the timing of the brain MRI Friday night and the myloegram first thing Monday morning, meant there was no time in between for me to have been informed of the results of the MRI. So this is how I learned that my cancer has spread to my brain. The valium, news of brain lesions, and lying in a position that caused pain to radiate throughout my arm and neck assured that once I received the local anesthetic, I wasn’t aware of anything they were doing to my back.

Following the procedure I spent a few hours lying in recovery and then was sent home to lie down the rest of the day. When Sandy wasn't by my side forcing liquids down my throat, there was lots of time to consider the implications of brain metastases. As soon as I was home I called Dr. Wilkowske's office and requested that he call me back. After leaving that message, I checked my voice mails and discovered that he had called me at 8:30 AM and left a message that I call him back. He had obviously done his best to get to me with my MRI results as soon as possible, but unfortunately it didn't work out.

Dr. Wilkowske called me back shortly after I left my message, apologized profusely for the way I learned of the brain lesions and went on to give me the details. There are three small spots in my brain, all less than one centimeter in size. This isn’t in any way good news, but if there is anything positive to take from it, it’s that they were discovered before they were big enough to cause any symptoms. He went on to tell me that he had spoken to my neurosurgeon and they had agreed that this was not reason enough to cancel my spine surgery. This is the only other positive to be found among the news.

The only treatment for this brain involvement is radiation. Dr. Wilkowske said that my radiology oncologist was out of the office Monday and Tuesday but he was going to get me in to see him as soon as possible because it was likely that they would begin radiation right away. I asked about side effects and didn’t hear much past “hair loss.” He continued to speak with me, sounding as sad to give me this news as I was to hear it.

I spent the rest of Monday on the couch alternating between being a puddle of tears to paralyzed with fear to shaking my head in disbelief. The tears won out on Monday, and disbelief seemed to take the lead on Tuesday. Fear blankets me on and off continually. The fact is that I have used up every coping skill I possess to deal with the upcoming spine surgery. I have nothing to spare for coping with the spread of cancer to my brain.

It was the news I had hoped never to hear and always dreaded. I also feared that it would mean my spine surgery, which I am almost looking forward to at this point, would be postponed and I would be forced to deal with the neck/arm pain and the side effects of pain pills longer.

On Monday night I talked to my “cousin-in-law” Jeff, a radiology oncologist in the same practice as Dr. Haselow. He explained that in all likelihood I would receive full brain radiation because of a need to treat all of my brain in the event that there is also cancer there that isn’t yet large enough to see. I didn’t think that I could feel much lower about this turn of events until Jeff told me that a side effect of full brain radiation is hair loss. Not just temporary hair loss. Permanent hair loss.

There is also stereotactic radiation, a one-time procedure, which targets specific tumors. Jeff said that they often do this following full brain radiation, as a radiation boost, but because cancer might be elsewhere in my brain it isn’t likely that this would be chosen as my sole course of treatment.

My appointment with Dr. Haselow was this morning. He had already talked to the radiologist who performs the stereotactic procedure and they both concluded that I should have both full brain and stereotactic radiation. Since there is not a lot of edema or swelling with these brain lesions, he felt it was safe to let me go ahead with surgery next week and hold off on radiation for a couple of weeks.

It always seems that by the time I get to the radiation meetings (having previously met with him for breast radiation and then spine radiation) I’m stunned silent and don’t ask many questions, but I think the nurse mentioned six weeks (daily) as being the normal course of brain radiation. The stereotactic radiation is a one-day procedure.

So here’s where I am:
- Mentally/emotionally/physically exhausted.
- Holding things together by a very thin thread.
- Nervous, nauseous, on edge.
- Greatly appreciative of offers of help and support, but I have no idea what I want from anyone. Since I don’t know what I need, it’s impossible to answer the “what do you need?” questions.

The last few days have been the worse ones in recent memory. I realize it’s hard to know how to respond to my news, to always say just the right thing and to read my mind, so I’m doing my best (which isn't always very good) not to expect that. I will ask that you don’t try to lighten the mood with brain jokes. While I have tended to deal with most of my experiences with humor, sometimes it just doesn’t work, and this is one of those times.

Here are things I know I need:
- Driving services for two weeks after surgery, though I don’t imagine that I'll go many places other than doctors’ appointments.
- Your understanding when I say “no” to some things, “yes” to others, when I am wish-washy, noncommittal and periodically unreliable. I won’t always return phone calls promptly. There are times when I may feel nearly normal and times when I’ll feel like I have nothing left to muster and just want to retreat, bury myself in the couch and stare blankly at the TV set.
- Emotion. It’s perfectly okay to join me in a good cry. Don’t feel you need to constantly boost my spirits and be perky. This sucks and it’s perfectly acceptable for you to express that to me.
- Your support, your help (even if I don’t know what I want from you), your company, your calls and your emails. Even if I don’t answer, it’s nice to know that you’re out there.

The surgery to remove the tumor from my cervical spine is currently scheduled for Tuesday, Oct. 28 at 7:40 AM and I’ve told my sister Marna that she’s in charge of posting updates here while I’m in the hospital. This would be the place where I might make a light-hearted remark, but Marna didn’t believe that I could write an entire posting without making any jokes. So I’m walking away now. Though it must be pretty evident from this posting that my urge to succumb to humor isn't very strong at the moment.

NOTICE: DATE OF SURGERY CHANGED TO TUES., OCTOBER 28.

Thurs., October 10 (Revised Fri., October 11)

How come every time I think I can fill this posting up with silly stories about the absurdities of my life, my plans get ruined by real medical updates? It’s not fair! I was intending to whine about the return of the hole in my toe as well as an extremely painful skin break in my index finger. I was then going to share my pain pill adventures that included unexpected naps during Yom Kippur services and behind the wheel of my car. And I’d hoped to tell you how proud I was when Rosh Hoshanah services began with an announcement to about 500 attendees that there was a blue RAV 4 in the parking lot with its lights on.

Unfortunately this program has been interrupted by breaking news of upcoming surgery to remove the tumor that’s pushing on my spinal cord. This actually represents good news on two levels. 1) If you were paying attention to last week’s ramblings, you’d understand that my ability to have this surgery means that my CT scan showed no progression of the cancer in my lungs and liver and 2) The scheduling of this surgery means that they actually believe they can eliminate the offending tumor and its accompanying pain.

I didn’t think that spine surgery was something that would excite me, but once I heard the positive results of the CT scan and realized that surgery was a good possibility, I found myself leaping for joy. (Sorry, the comic strip depiction of this is not yet available.) During today’s visit with the neurosurgeon, I wasn’t feeling quite as exuberant, especially after he listed the risks involved with this type of surgery. But once he gave me examples of what could happen WITHOUT the surgery (quadriplegia and asphyxia), the surgery risk list looked about as scary as a box of kittens.

Thursday’s medical schedule rivaled last Friday’s, without the white goopy beverage. I started with the neurosurgeon, then went for chest x-rays, then had an appointment with my oncologist, then went to the lab for blood work and to give a urine sample (after being shuttled back and forth between the lab and the IV treatment center a few times due to confusion over whether my blood was to be drawn from my arm or my port-a-cath), and finally I headed up to the heart center for an EKG. Next up is a brain MRI and a myelogram where they inject dye into my spine to get a good look. The neurosurgeon explained to me that all this testing “lays the foundation” so that by the time they do the surgery, there are no surprises. This comforts me. We all know that the worst two words one can hear from a doctor is “uh oh.” Yes, I know I’ll be anesthetized, but I have very good hearing.

Surgery is scheduled for Tues., Oct 28 (this is an update to my original posting which said Oct. 22). Besides the surgeon, the two-hour procedure also includes an “evoked potential,” who is a doctor whose sole job is to monitor my spine during surgery. I’m not sure what the term “evoked potential” means. “Spine monitor” seems like a sensible term to me. Regardless of what silly thing they call him, he is being imported from another hospital to handle this task. He wasn't available on Oct. 22, thus the date change for surgery.

I’ll be in the hospital for two or three days. I still have a lot of questions regarding the length and extent of my limitations following surgery, but in some ways I prefer not knowing the answers yet. The only question I remember getting an answer to is “Will I have to wear one of those halo things?” No. I DID ask a couple of other questions about recovery, but have conveniently forgotten the answers. Since the surgery will happen no matter what, I figure ignorance is bliss for now.

No unwieldy missive tonight. Just the facts…along with the usual uncontainable asides.


Announcement from CaringBridge : CaringBridge is moving to a new web server on Saturday, October 11, 2003 from 3:00 p.m. to 6:00 p.m. CST. The move is necessary to update the technology.

The CaringBridge Web site will not be available for use on 10/11/03 from 3:00 p.m. to 6:00 p.m. It may take up to 72 hours past the move date to be able to make updates. You will know the server change is complete once you are able to update pages with new journal and guestbook entries.

Saturday, October 4, 2003; very, very early in the morning

On a scale of one to 10, I give this week a two. The only reason it wasn’t a one was because I drove around in BMWs, got a free sweatshirt, and had my picture on the side of a car. The only reason I didn’t rate it a three was because my picture was the size of a Triscuit.

I’ll skip the usual build-ups and/or cute openers preceding not-so-great news and jump right in. The neck/arm pain I’ve experienced from the tumor pushing on my spinal cord never improved following January’s radiation treatment (despite the 90 percent success rate that was quoted to me) and has worsened over the past few weeks. My imagination can often get ahead of me, making me hypersensitive to innocuous aches and pains throughout my body, but I knew this pain wasn’t the same.

Ever-vigilante, familiar with my doctor’s reactions to my complaints, and always vigorously jogging to stay a step ahead of my care, I called the doctor’s office last week and suggested I get an MRI before this Friday’s doctor’s appointment. Dr. W. agreed to this. Since I was 99.99999999 percent certain that the results of the MRI would mean further tests and appointments, I thought “why wait until Friday to get this ‘party’ started?” and called the doctor’s office again on Monday, extracting a promise that the doctor would call me on Thursday with the results.

On Thursday Dr. W. called. Unlike me, rather than launch right into bad news (though now that I reread this, I guess I’m building up after all, aren’t I?) he instead quizzed me about my pain. I didn’t let him get away with this for long and boldly asked “what were the results of the MRI?” It was pretty easy to be bold, since for once (maybe the very first time ever) I already knew the answer. Yes, the tumor pushing on my spinal cord was larger. Even though it was “slight,” there isn’t much room in the spinal column, so a slight growth can cause significantly more pain.

My psychic abilities worthy of Carnac the Magnificant continued to be right on: Dr. W.’s next steps were to set up a CT scan of my lungs and liver, and arrange consultations with my radiation oncologist and a neurosurgeon. At my appointment with him Friday morning we talked about what might happen based on the opinions of the radiation oncologist, the neurosurgeon, and the CT results.

The only thing I know for sure is that my days of Xeloda are over. I don’t know what’s next on the chemo list (and, on a related note, what this means for the future of my fine crop of hair), but he mentioned two scenarios, neither of which look very pretty: 1) If the spots in my liver and lungs are stable, the neurosurgeon may recommend surgery to relieve the tumor’s pressure on my spinal cord. 2) If the spots in my liver or lungs have grown, we probably wouldn’t bother putting my body through this surgery.

Spine surgery or further metasteses that prevents spine surgery. This is a lot like having to decide whether I’d rather be gored by a bull or fall out of an airplane. I’m doing my best to not obsess about it until I know exactly what I should obsess about. I’m not against worrying, I just prefer that my worrying be focused! Dr. W. prepared me for the fact that the radiology oncologist, Dr. H., would probably NOT want to do more radiation, but as a cautious and attentive doctor, he felt I should consult with both Dr. H. and a neurosurgeon so that "everyone is talking" about what to do.

Following this head-spinning conversation, I had a well-timed therapy appointment at 10, raced to the pharmacy to pick up some serious pain meds (so serious, I’m scared to take them), ran off to the airport for a one-hour visit with Laurie M. as she passed through MSP, and then sped back to the clinic for my 2:00 consultation with the radiology oncologist. As expected, he did not think more radiation was the answer. I apparently maxed out my dosage last January and he was not comfortable messing around (my words) in the area of my spinal cord. In hindsight, it occurred to me that the tumor is the same distance from my spinal cord now as it was when he treated it in January, but I think I may have not followed his explanation. (I usually take copious notes, but at this point in the day I obviously didn’t have any energy left to pull out my notebook and pen.)

Throughout all this bustle of activity, I was in the midst of a seven-hour fast for a 5:40 PM CT scan. After I finished with Dr. H. I pitched a tent in the hospital lobby and stuck my nose in a book, pausing at 2:40, 3:40, and 4:40 to chug white goopy contrast in preparation for the scan. I tried to view each hour’s swig as bringing me one hour closer to food. At 6:20, I finally headed out of the hospital. I was three-quarters of the way down a long deserted hallway, fantasizing about pizza and Hagen-Dazs, when I heard my name being called. I turned around and found the CT technician chasing after me; she’d forgotten to scan my kidneys. I had to plod back down the hall, back to the scanning room and lay back down on the table. Ya know, it hadn’t occurred to me until now, but this might explain why when I stopped at the grocery store, I had a sudden craving for chili.

Don’t let my “not obsessing” philosophy lead you to believe I don’t need a sympathetic ear or a shoulder to snivel on. Sometimes my brain forgets to tell my body that it’s not worrying, and vice versa. And my fierce independence, strong denial instincts, and very loud voice often prevent me from realizing this at the time. Today is an example: After about two hours into my three hour stint in the hospital lobby it occurred to me that I should have asked a friend to help me while away a couple of hours. I would’ve made it difficult though, because if anyone had asked me the day before (which someone did) if I needed anyone to come with me I would have said “oh, no, no, no.” The challenge is in knowing when “no, no, no” (which I really mean, or think I mean, at the time) will become “yes, yes, yes” once it’s too late. I guess I need to figure this out. Or come to terms with my multiple personality disorder.

So where does this leave me? I’m waiting for the neurosurgery department to call and set up an appointment. On Monday I’m supposed to call Dr. W. to help move this process along if necessary, and also to get my CT results. I’m not feeling particularly optimistic about them, but usually that’s a good sign. When I expect good news I get bad news and when I expect bad news I get good news, but I think this whole spinal column tumor has thrown off my karma. So alongside my “not obsessing…yet” outlook, I’m hanging onto a bit of hope that there are other options that haven’t been mentioned yet. My favorite is the one that involves no spine surgery, a new chemo that shrinks everything, and keeping my hair.

Before this posting turned into the Encyclopedia Britannica I had room for an update on my feet and a description of my day at the BMW dealership. Unfortunately I’ve been notified by the Internet authorities that I have used up of my allotment of Web space this week and I am only allowed 300 more words.

Here’s a quick summary of what was SUPPOSED to be in this space before that stupid real news got in the way:
1. I actually downplayed my foot problems in the last posting and neglected to mention that in addition to the infection in the toe region of my left foot, I also had an infection in the heel region of my right foot. The night I wrote my last entry, I was in so much pain I could only walk on my left heel and right toes, which was quite a difficult (forgive me) feat.

2. Depending on my schedule, I do often experience drowsy times of day, but still find myself wide awake late at night. The other night I hit my latest “night” ever. I finally turned my bedside light off at 6:30 AM.

3. I’ve grown bored with the dull black and white world of writing and have decided to also tell my tale in watercolor. One example is at the top of this posting. I’m scanner-impaired at the moment, but am working on figuring it out so I can post others in my photo album. Truthfully I’ve become totally disgusted by all the hours I’ve spent unsuccessfully trying to scan at a size that doesn’t take 12 hours to download and I’ve pretty much given up working on it, but I didn’t want to tell you that. I’d hoped to string you along for awhile, but ended up achieving a modicum of success and managed to upload a couple more of my comic tales (at inexplicably different sizes) to the album.

The sirens of the World Wide Web police are getting closer. I’ve gotta go before I get pulled over and ticketed for this lengthy and not all that amusing posting. (Which is now four words over the legal limit.)

Tuesday, September 16, 2003 7:54 PM CDT

It would be much more dramatic to tell you that I was emergency airlifted to Mayo for surgery to ward off a possible foot amputation, but in reality I had an emergency appointment with a podiatrist to treat an infection in my toes. Between my toes to be more accurate. It’s been awhile since I’ve had any whacky detours to new kinds of doctors brought on by side effects, so I’m quite pleased to have a new “-ist” to join the lengthy list of “-ists” I’ve visited over the last five years.

In addition to the sloughing of my skin, this past chemo has caused cracks and cuts on my toes and feet. Since that doesn’t make for a riveting story, over the past couple of days I developed a “hole” between two of my toes. It’s become progressively more painful every day, and by last night it was throbbing excruciatingly.

This morning’s rendez-vous with a podiatrist was not my idea. In fact I only mentioned the toe thing yesterday as an aside to my call to my doctor’s nurse about another issue. But evidently my oncologist does not take holes between the toes lightly and first thing this morning I found myself face to foot with a specialist who studied my feet intently, pulled dead skin from around my toe crater, elaborately swathed my foot in a bandage pattern (which I’ll never figure out how to reproduce myself at home), prescribed 10 days worth of antibiotics (4 times a day), and asked me to come back in a week.

I must be in a state of constant denial about how serious these things can be because, aside from presenting me with a [very] little tale to tell, it felt a little silly to run (so to speak) to the doctor with a cavity between two little piggies…neither of which went to market or had roast beef. But last night as I noticed the tender, red area spreading and pain was radiating throughout my foot, it started to seem like a better idea.

Before my feet took this disagreeable turn, the best story I had to tell was about my new bad habit of helping my feet shed their skin. This also explains my late nights; I have to stay up and peel my feet. The combination of cuts, holes and tender baby skin leaves me whimpering and limping around the house at the end of each day. My chemo break week has been extended to an undetermined period of time. No chemo until my wounds have healed.

Here’s the first of this posting’s educational tidbits: The skin on the bottom of your feet is necessary for traction. Since my feet have molted, I’ve been sliding across my hardwood like it’s a skating rink. I haven’t wiped out yet, but it’s only a matter of time. I’m tossing banana peels around to move the process along.

With all my toe trials, I almost forgot to mention my nose. Whatever has been happening to my feet and hands has similarly affected my nasal passages over the past couple of weeks. They are continually dried and, frankly, my nose hurts! I stuff healthy dollops of Vaseline up it on a regular basis, and have discovered that it’s difficult (though not impossible) to peel the inside of the nose. Last week I saw the nurse practitioner who confirmed my suspicions that this was a Xeloda side effect. I neglected to say anything to the nurse on the phone yesterday so have not yet been scheduled for an emergency appointment with a nasalologist.

Laurie M. called me around 11 PM a few weeks ago. She explained that she wanted to make sure that she didn’t wake me by calling too early. It’s obvious that my inability to sleep normal hours is fodder for your amusement. And I’ve concluded that those of you who aren’t amused are too scared to call at all, for fear that whenever it is, it will awaken me. Don’t worry. First, I won’t remember that you called anyway. Second, I have recently discovered a few contraptions relating to phones, like the cord, which can be unplugged and the ringer that can be turned off. I can completely control whether I hear my phone ring or not. But here is news even more earth-shattering than the discovery of interesting phone features: For the past three days I have been up and OUT of the house before 10 AM. On Monday I had an appointment to get my hair colored at 9 AM. (Yes, there are a couple of things crucial enough for which to arise early.) It feels like it’s been years since I last glimpsed that part of the day. Did you know that Katie and Matt still host the Today Show? I also learned that adding all those extra hours to my day gives me even more time to accomplish nothing.

If you remove my toes and my nose (which may look funny but sounds like a pretty good idea right now), this past week has delivered a spate of good luck. But since I’ve taken up far too much Web space already, I’ll whittle these items down to the basic facts. None of the following have anything to do with a cure for cancer, so don’t set your expectations too high:

1) I won a $100 gift certificate at a fashion show raffle [insert Trudy’s name here so she gets credit for inviting me to the fashion show].

2) I carried my team to victory in a tense trivia face-off at Molly Quinn’s Irish pub. [Don't mention Marna here, just to annoy her.]

3) A graphic designer I’ve worked with through my volunteer work at the Komen office asked to design my CD cover/insert. This lifts a huge weight off my shoulders, as I was worrying and procrastinating under the assumption that I would end up spending hours and hours doing it myself [insert Scott's name here, which won't affect him in any way since he doesn't even know this Web site exists].

4) I discovered a love of (not to be confused with “a talent for”) painting in water color, thanks to an art-filled afternoon with Karen and Abby. [Insert Nancy Torell’s name here because I wanted to put it somewhere.]

5) I’m receiving a “Local Hero ” award at a BMW dealership as part of BMW’s “Ultimate Drive” to benefit the Komen Foundation. I don’t fully grasp the concept of the event; all I know is that I’ll be at Bloomington Motorwerks from 11 AM to 1 PM on Tues., Sept. 30, that I have to give a one to two minute thank you speech (Two minutes? They think I can get to the point in two minutes?), I get to take a BMW for a joy ride around town, and get my picture on the side of a car. Now that’s an interesting way to get attention that I haven’t previously considered.

6) Time Warner presented me with a digital video recorder (which I continually call a “vigital dideo recorder”) for a mere $5 monthly increase in my bill. I am so amazed by its ability to pause and rewind live television that I’ve had it for five days but haven’t seen the end of a TV show yet.

7) Whether this next item qualifies as “luck” depends on your personal outlook, but a friend recently presented me with a card and some hand-rolled, er…hand-made gifts. Though I’m not currently experiencing any nausea, these gifts can be used for medicinal purposes in eight states. I promised to put them in safe place in case they're needed in the future. I’ll never remember where that is, which hopefully will keep me out of jail in the event of a police raid.

And finally, I will leave you with a helpful household hint from Jolene, who cleans my home because I refuse to: Close the lid of your toilet before you flush to prevent germs from leaping out of the toilet and landing on your toothbrush.

I have failed to follow this advice, and look what my life has been reduced to: Cancer, massive diatribes because my toe hurts, and illegal drugs.

Friday, August 15, 2003 2:27 AM CDT

A few years ago my doctor warned me of the amnesic effects of the particular sleeping pills I take. He shared a story about a businessman who took the same pills (with alcohol) on a flight and had no recollection of his entire trip. Yes, I am about to tell you my own amnesia tale, but no, I didn’t forget about an entire trip…not that I would remember if I had…but I do recall a recent trip to Lake Wabana near Grand Rapids, MN with Diane, Ben, Vik, Albie, Tally and Faith.

No doubt I’m blank on parts of it, but I do remember playing catch with dogs for several hours, being pelted with tennis balls and rocks if I refused, making the huge mistake of wading in the lake while there were two children with buckets nearby, arguing with Diane about the correct spelling of “boggle” (I won’t tell you who was right, but suffice it to say that I don’t bother writing about debates that I lose), bestowing my vast mental health wisdom upon Vik, feeling quite athletic paddling around in kayak, and joining a dog in a sit-in protest when it was time to leave. Most shocking is that I actually remembered the name of the city and lake we traveled to. Even though Diane had taken me there once before, I have been unable to imprint the location into my mushy brain. You’d think the Grand Rapids/Judy Garland connection would have made an impression on me but instead I would tell people I was going “up north,” and until I was actually there this time, I was unable to be any more specific about my location. It seems “I have no idea” wasn’t good enough for those nosy enough to ask where I was going.

Now, back to the amnesia thing. (Bet you thought I’d forget.) Sleep has been a serious issue for me for a long time. I don’t get tired most nights and have relied on sleeping pills to conk me out nightly for over three years. Luckily the same drug has worked for (and on) me all that time. But since I’ve become a non-working schlub…a drain on the government…one free of the handcuffs of corporate imprisonment…my schedule has slowly turned upside down. Not only do I still not get tired at night, but since most days I don’t have to arise at any particular time, I often forget to go to bed at what most would consider a normal hour. As my nights have become later than most people’s and my mornings become later than most people’s, they (i.e. you) sometimes call me at times when everyone else in the state is awake. Fortunately I’ve always been one who awakens fairly alert and coherent; I think this is still the case, except that now I hang up the phone, go back to sleep and completely forget about the phone call.

My friend Paul may be able to attest to how coherent or incoherent I am on the phone when awoken; I THINK he may have experienced it firsthand. On Saturday night, my beloved sleeping pills failed to knock me out and I found myself wide awake eating Toaster Scrambles and watching HBO at 5 AM. Frustrated, I took another 1/2 a pill and eventually fell asleep sometime after 5:30. The next night I suffered the same problem and tossed and turned until early in the morning. In the midst of my tossing and turning, at about 4:30, I was suddenly jarred by the notion that I might have talked to Paul the previous morning. Ever so slowly it began to seep into my memory that Paul had called to tell me that he and Lauren had a baby. The memory was extremely fuzzy and seemed more like a dream than anything that actually happened, but the more I thought about it, the more I was convinced it had happened.

The thought that 18 hours later I was unable to remember an entire conversation about a friend’s major life cycle event certainly didn’t help my insomnia. But until Paul confirms or denies the call — and I haven’t had the nerve to email him the question (“So Paul, about that baby thing…”) — I won’t know for sure. If it turns out not to be true, but they end up having a boy named Benjamin, it will appear that I’m quite a gifted psychic.

Hopefully that story serves up not only an entertaining anecdote, but also an explanation and warning to anyone who calls and speaks to a supposedly alert me anytime before 1 PM.

Since that story took up quite a bit of your time, the rest of this update will be semi-brief yet still extremely informative.

- The most recent dose of Xeloda was not a hit with my hands and feet. My hands turned so red and sore I had to (got to?) stop taking it for two days. Now they’re also cracked, dry, ugly and my skin is stretched tight. My fingers are so hard and smooth that I’m unable to grip things, and the pain of getting jabbed when I miss what I’m trying to grab makes me yelp. And they seem to be getting worse, not better. I’ve been on a chemo break week since last Thursday; I saw my doctor Wednesday and he gave me another week off to give my hands more time to heal. He reduced my dose back to two pills a.m. and p.m., starting next Wednesday. I was on that dose awhile back and had no side effects. My hands and I look forward to returning to those good old days.

- Since last I posted, I’ve joined a synagogue. I am now, according to the message on my voice mail, an official member of the Bet Shalom congregation. Do I look any different? During my synagogue search I learned that most of my non-Jewish friends don’t understand the concept of “joining a synagogue,” which entails paying monthly or annual dues. Unaware of how churches operate, I in turn asked them questions about the “collection plate” thing. It had never occurred to me that paying a membership fee wasn’t the norm, and it actually seemed funny to me to empty the contents of one’s wallet or deposit a check into a plate every week. Uh oh, it’s time to move on. I’m treading dangerously close to a controversial topic, which is something I try to avoid on this site. I prefer to offend people in person.

- Today was supposed to be my last CD recording session. We recorded two songs and tried for a third but were stopped by time and my voice. I’ve been hoarse and phlegmy for the past week or so. Greg, the pianist, transposed the first two songs so they were in a range I could hit (about five notes), but I couldn’t quite croak out the last song…or more accurately, all I could do was croak out the last song. Fortunately, Greg played exquisitely and his piano part is on tape, so when/if my voice comes back (which suddenly reminds of that popular song, “I Left my Voice in Lake Wabana”) I can go in and record the vocal part. And I have the piano part on a CD so I can rehearse with it. When I arrived and announced to Greg and Matthew, the recording engineer, that I was hoarse and phlegmy they thought that sounded like a songwriting team. I’ll be sure to credit them on the CD insert, since they were heavily involved in today’s session: “The Nearness of You” — I. B. Hoarse & I. M. Phlegmy.

Well, considering I’m suffering from amnesia, I managed to tap out a rather lengthy missive. We can only imagine how long this would be if I could remember the other 12 hours of my days. But I probably have an idea what it would include: Sleep, sleep, sleep, eat [repeat].

Thursday, July 24, 2003 1:19 AM CDT

This may be a case of bad news that’s not all bad or good news that’s not all good. I think more the former than the latter, which makes it bad news that’s kinda good rather than good news that’s kinda bad, which overall means…I’m not quite sure -- I’ve even confused myself.

In preparation for Monday’s CT scan I drank my four helpings of white goop. My 11:30 and 12:30 doses went down fairly easily. The 1:30 cup almost didn’t make it down permanently, but somehow I managed to contain it, between gags (and by gags I don’t mean jokes). The final drink is swilled when I get to the hospital, and I always drink it in the restroom just in case. I haven’t yet thrown up in front of a waiting room full of people, but it’s not beyond my imagination.

This morning at the unbelievably bright and early hour of 11:30 I saw my doctor. He always starts out conversing with me and then listens to my lungs and heart, as I tap my foot, look at him quizzically, and do a lousy job of pretending I’m not impatiently waiting to hear my test results. (Probably like you’re doing right now.) After five years as his patient, I haven’t come to any definite conclusions, but I suspect that the worse the news, the longer he makes me wait.

Today was the first time he ever used the “good news/bad news” line on me. But there was only one piece of bad news compared to two pieces of good: The bad news is that the spots in my lungs have grown since my last scan. (However he still deems them “tiny.”) The good news is that the spots in the liver haven’t changed. And the other good news is that just because the spots in my lungs have grown does not mean that Xeloda is scratched off the chemo list. He said that it can take more time to work, so the fact that the lung nodules have grown isn’t indicative of Xeloda’s ability to slow down or temporarily stop future growth. This unintentionally answered one of the questions I planned to ask today, which was, how exactly do you determine that a drug works or doesn’t work, since “a little growth” is definitely better than “a lot of growth?” Which leads to a question that I can’t quite verbalize but sounds something like, if you take someone off a drug because cancer has grown but the cancer grows faster on another drug, then the first drug obviously worked better than the second drug but how do you know when “working better” is the best you can hope for? Oh, that wasn’t so difficult to phrase after all.

So we’re upping my dose (I didn’t classify this detail as “good” or “bad.” I’m still thinking about it.) Now I’ll be taking three in the morning and three in the evening. There’s a pop quiz today: What were my previous doses? Describe in detail each dosage amount, schedule, location, and important side effects. And anyone who has recently asked me “When did you have chemo?” has already flunked the test.

One of my bazillions of physical anomalies is that I can’t jump out of bed and pop in my contact lenses. My extremely dry eyes reject them by responding with pain, so the three of us try to have some coffee and read the paper before we insert lenses. Unfortunately, some days -- like today—require that the contacts be put in immediately upon rising . (If you ask “Why don’t you wear your glasses?” you flunk Part II of the pop quiz. True e-Dale scholars can answer that question.) As expected, my left eye screamed at the indignity of being introduced to a contact lens before 3 PM. In response, I found in my medicine cabinet what I thought was an antibiotic eye drop -- leftover from the infamous Las Vegas eye crisis (LVEC) – and put a drop in my eye. It turns out that I grabbed the wrong bottle (no, I didn’t squeeze toothpaste in my eye, it was a medication meant for the eye) and whatever the drop was -- the container was so tiny it was impossible to read the label -- it dilated my pupil.

It was dilated so big and for so long that when I arrived at the clinic it alarmed my doctor. I had to meekly explain to him that I had used the wrong eye drops. To add to my embarrassment, when he asked me what I had put in my eye, I couldn’t tell him what it was. But it was a good thing that I have no fear of appearing like an idiot and fessed up early on. He said that a dilated pupil can indicate certain neurological disorders. I’m not sure he’s totally ruled that out, but I could at least assure him that my dilated pupil wasn’t an indicator. When I got home I looked at the bottle; the name of the drug (also leftover from the LVEC) was the only thing large enough to read (though only with my UNdilated eye) so I went to the Internet to find out what I’d done. It turned out to be a drug that dilates the pupil (duh) and relaxes the eye muscles. Ya know, when I was getting the test results today I could tell that my left eye was more relaxed than my right.

As I picked up my Xeloda prescription today it occurred to me that when I received chemotherapy via IV, I was never charged a co-payment, but at the pharmacy I have to pay $25 for each prescription, which I fill every three weeks. It just doesn’t seem right (she says with great indignation. “I’m going to make a call!” ) I figured there was no harm in quizzing my insurance company about this. Why, I asked, do I have a co-pay for chemotherapy that I pick up at the pharmacy but not chemotherapy I receive in the Cancer Center? I should have phrased it differently…I came close to getting billed co-pays for my previous 1,000 IV treatments. Luckily I reached an extremely good-natured and sympathetic customer service representative. She listened to me, agreed I had assessed the situation correctly, and said that that’s how things worked. I achieved absolutely nothing, but she was very nice to chat with.

When I saw Dr. Wilkowske a few weeks ago I mentioned (i.e. complained) to him that every time I schedule an appointment with him I have to listen to the receptionists complain about how busy he is and how difficult it is to schedule my appointment. This is usually accompanied by rolls of the eyes as they look at my paperwork and discover that he wants to see me again in a mere three weeks. They often shake their heads and mutter, “What is he thinking? How am I supposed to do this?” (I have now figured out that my complaints at the clinic rarely fall on deaf ears. The last complaint to my internist resulted in a call from another doctor and Park Nicollet receiving many hours of free editing.) This time I received a call from the receptionists’ supervisor. I voiced my concern that it wasn’t particularly comforting to hear that my doctor is too busy to see me every single time I schedule appointment -- which has been approximately every three to four weeks for five years. I didn’t think to mention that since he HAS seen me every three to four weeks for five years, he obviously ISN’T too busy. (And, if this is true, what the heck am I complaining about? Good question. Because I want to see how much power I wield!)

Well, those receptionists must have gotten a good talking to. Today when I came out with my paperwork that requested another appointment in three weeks, things had changed. I watched her carefully, of course, to see what would happen. Instead of uttering anything about not being able to see where to squeeze me in (and it was obvious she couldn’t) she said, “I just have to go back and talk to the doctor for a minute.” I knew why. That’s what they often do if they can’t figure out that he double books and schedules patients during his lunch hour. At least this time I didn’t get drug down the grueling path with her. Hmmm, how should I use my influence next? To insist that they replace the hard candy in the treatment rooms with Hershey’s Kisses? To rid the waiting room of five-year-old magazines? Or to require boxes of kittens and puppies at every appointment? Yes, it’s me -- Dale Wolf, Super Patient -- making life better for all patients everywhere. Go ahead and dab your eyes while I let out the kind of loud, evil cackle that is only emitted from those drunk with power.

Tuesday, July 1, 2003 11:11 PM CDT

Once again I have reason to be grateful that I have no gut instincts whatsoever; Monday’s MRI of my cervical spine indicated “no change,” This time “no change” was definitely a relief. (Funny…last time I thought “no change” was bad news.) Those of you that found your way to this site on your own and discovered the unannounced posting prior to this one, know that I’ve been experiencing more pain in my neck and arm. Certain that it meant the tumor in my spinal column was growing I called my nurse who called my doctor who sent me for an MRI.

On Monday I went directly from the MRI to an already-scheduled doctor’s appointment, clutching the MRI film to my chest. I pulled them out of their envelope in the car to look at them and the only thing I could see was spine. I’ve never been able to make heads or tails out of x-rays….though I think I could see the difference between heads and tails. Carrying the film to the doctor’s office was a fairly worthless exercise, since they had to be compared to previous MRIs in order to tell us anything. But I suppose if the tumor had grown to the size of my head, he might have been noticed it in the films without comparing them to anything. Of course, if the tumor had grown to the size of my head he probably would have noticed without an MRI.

I’ve read over and over that it’s a good idea to take someone to doctor’s appointments with you, especially because when one hears bad news they often stop listening, and miss everything the doctor says after “you have cancer.” When I get bad news I have a tendency to ask many questions and take copious notes. My listening problem seems to kick in when I get good news. When the doctor called me this afternoon, I can't remember anything he said after "no change." He had told me yesterday that if the tumor has grown he would be sending me to a neurosurgeon. Words can’t described how relieved I am to not have to find out what a neurosurgeon would do to me.

After eight days of “rest,” (?) tomorrow I start a slightly increased dose of Xeloda (three pills in the morning, two at night up from two in the a.m. and two in the p.m.). On July 21 I have a CT scan. The bad kind. The fast for seven hours and drink disgusting white goop every hour for three hours before the scan kind. When they scan just my lungs I don’t have to drink that stuff, but when they want to look at the larger abdominal area, the gaggy contrast comes into play. Its only redeeming quality is that it comes in a cute little miniature milk container. We all know that cute things are easier to digest. This is where my friend Laurie Manny reminisces about my college days when I categorized food as “cute” and “not cute.” I don’t remember what fell within these classifications, but I’m pretty sure that “barium sulfate suspension” didn’t fall in either category.

When I’m not running around getting tests and annoying doctors I’ve been fighting with insurance companies, reading and recording for the blind, recording my CD and helping at the Komen office. The rest of the time I like to keep free so I can sit back and see what chemo will do to me next. The latest: Still recovering from the “hand and foot syndrome” from weeks ago, last week my heels peeled off.

More evidence my brain is rotting, #1,764: Before putting clothing with stains in my laundry basket, I rub a “Spray & Wash” stick over the stain, usually before I take off my clothes. One night I noticed a stain on my shirt. My brain knew it required an applicator stick (“get the stick, get the stick, get the stick”), and my feet headed to the dresser (“there’s a stick, there’s a stick, there’s a stick). I rubbed the stick all over the front of my shirt before I realized that it was deodorant. And ironically it took three washings to get the deodorant stain off of my shirt.

Saturday, June 28, 2003 2:31 AM CDT

A little entry just for those of you cool enough to check this site unprodded. (Better let me know that you were here in order to redeem your "cool" points.)

Neck and left arm. Hurts. More uncomfortable. Increased pain. Bothers me almost all of the time. Called nurse to whine on Friday, which resulted in being scheduled for an MRI of my cervical spine on Monday. I have a previously-scheduled doctor's appointment two hours later. A "fast read" was requested to allow me to carry MRI films back to doctor's office. No guarantees, but they get an "A" for effort.

Because I need to drug myself in order to allow them to wedge me into the MRI tube, I've made very complicated arrangements with my friend my Jane to shuttle me back and forth between the clinic and the hospital. I hope she remembers what she's supposed to do because I don't .

The smaller dose of chemo is much, much more bearable than the original dose. (Though the pain radiating from the tumor in my spinal column takes away a bit of my gleefulness over this.) This was a "chemo rest" week. Rumor has it that next week the dose was going to be increased a bit, but now I have no idea how the MRI results will affect the plan.

June 9: Drew the perfect eyebrow. (Singular. The other one was only average.)

June 17 & 18: Two glorious nights in the recording studio singing to my heart's (a probably no one else's) content. Simmer down, though...the CD won't be completed until late July.

June 20: Laurie, Fred, Helen, Dick & Mark came to Minneapolis for an "All about ME" weekend. (A button was presented that was required weekend' wear, which will be scanned to the photo album when my scanner is operational.) I suspect that during the several hours they spent together while I was still sleeping there may have been some "not about ME" moments, but I'm trying to dismiss this thought.

June 23: Had first salon cut and color in three years!

June 27, Made note to self: In next life find notary public that is over 16 and actually knows what a "health care directive" is.

That's all. I hope you feel properly rewarded for stopping by.

Friday, June 6, 2003 11:58 PM CDT

Did I already say “FEH!”? Well, if so, it bears repeating. That was the sickest I’ve felt in recent memory. Though I guess I’ve made it clear that “recent memory” is a pretty short period of time.

On Saturday night, my second night of fever, I was given the option of going to the hospital or getting an antibiotic. What kind of choice is that? Simply take a pill a couple of times a day for a week or so, or go someplace where I can get showered with attention and be waited on hand and foot? Actually, I’m still weighing the decision.

There are very few parts of my body that weren’t affected by that nasty Xeloda: Besides the stomach and burning feet issues we’ve already analyzed at length, for the first time I had mouth sores (a common side effect of many treatments, but one I personally never experienced); I had rash on my neck; my thumb, index fingers, and balls of my feet are numb; the inside of my mouth and my teeth are extra-sensitve (there’s cracked plaster in my bathroom ceiling where I hit my head every night when I accidentally brushed one particularly exposed nerve); my saliva dried up; I was so dehydrated that I had to lie down on my kitchen floor to keep from passing out; and finally, my taste buds seem to have vacated my mouth. This may be the worst chemo ever.

On Wednesday I headed to my doctor’s appointment clutching my notebook full of complaints, none of which appeared to surprise him. In hindsight, I think I’m glad I wasn’t told how bad this drug’s side effects were; oblivion can be a good thing. Since my misery wasn’t unexpected, happily I get to continue taking this stuff. You might be amazed to learn that I view this as good news, but I do. The list of chemos left to try on me is a fairly short one, so I do not want to eliminate a drug simply because it makes me sick…and makes my digits numb…and inflicts agonizing pain…and causes me to periodically lose consciousness. If only the toxicity of a drug were directly related to how well it worked. The doctor DID decide to cut my dose in half and I will start the new dosage on Monday if I feel ready to give it another go. I can’t imagine ever feeling completely ready, but I hope that by Monday I can at least look at the pills without breaking into a cold sweat.

Now on to my less physically agonizing problems:

I went to Waterloo a few weekends ago. (No, that's not the problem.) My packing skills provided continuing proof that I’ve lost my mind. (Perhaps my tastebuds went to visit it.) In an attempt to ease my hand and foot syndrome before showing any evidence of it, I was ordered to take extra care of my feet and hands. Part of their pampering includes slathering them with thick cream (my choice is “Udderly sMOOth” udder cream; it's the Iowan in me) and donning gloves and booties when I go to bed at night. (Add the Dr. Seuss pajamas to this picture and you can only imagine what a stunning sight I am to behold.) I knew that I had gloves and booties in my bedside table from similar moisturizing efforts a few chemos ago, which I found and tossed in my suitcase. When I arrived in Waterloo I discovered I had packed one glove, one bootie, and one sleep cap. Not a thing that matched. I put socks on my feet and tried wearing the booty on my hand, but it was impossible to turn the pages of my book.

Further proof of how I’ve joined my mother on the road to dementia. A recent phone conversation:
Mom: Your dad and I went to a new restaurant tonight. It’s called Tony’s and it’s right near…uh…you know, uh, the whatchamacallit, the…you know, the grocery store where I shop.
Me: No, I don’t know what grocery store you shop at. What grocery store?
Mom: You know…the one on, uh…what’s that street?…uh, Ridge…no, no…what’s it called? Ansborough.
Me: Oh, the grocery store I went to when I was there.
Mom: So…uh…why was I telling you about the grocery store? I can’t remember what I was going to tell you.
Me: I can’t remember either.

Many of you were privy to some secretive activity that’s been taking place behind my back. My friend Mary Hirsch furrowed through my guest book for email addresses, contacted those of you that were brave enough to include your email addresses, received many positive responses and then told me about the kind and unbelievably generous plan she hatched with the help of my friends to assist me in my dream of recording my CD.

Mary asked me to post her email message here for the benefit of those she wasn’t able to contact through guest book postings. I’m posting it as she wrote it, and refraining from any editing – a feat I’ve never before performed -- though I am allowing myself one side comment first. She mentions in her message that I said I wanted to make this CD my legacy; she omitted my other option: Establishing the “Dale Wolf Over 40 Musical Theater Company” and staging the world premiere production of “You’re an Old Man Charlie Brown.” But I gotta say, this is pretty cool too.

Obviously it’s no longer a secret from me (unless I forget about it, which is not out of the realm of possibility), and Mary has already received enough responses to proceed, so I’ll include her follow-up message as well. I’m a little embarrassed about posting her messages, but Mary put her glistening newly registered-in-Minnesota UNconcealed handgun to my head. Please respond to Mary regarding this matter; I’m sticking by my “oblivion can be a good thing” philosophy.


Mary’s Phase I email:

Hello to all my fellow FOD's (Friends of Dale). My name is Mary Hirsch and I am sending you this email because I would like to do something special for Dale. First, if you get two or more of these please excuse me . . . I cut and pasted these email addresses from the guest book of Dale's web site and tried to be sure I didn't duplicate but I'm not like Dale, I'm not perfect.

When i had dinner with Dale about a month ago she told me that she has started to record a CD of jazz songs and that she wants to finish it and make it her legacy. A couple of things are stopping her from finishing it.. . one is time because she has to do it when she's feeling good and the other is money. Well we can't do anything about time but I think if we all pool together we can do something about money.

I am trying to find a recording studio and producer to help her finish the CD. Unfortunately my ship hasn't come in . . . actually I believe it came in but I was at the bus depot when it arrived (oh well). What I am hoping is that her friends can rally and donate some money to make it happen.

I don't know what the cost will be but I am sending this email to find out if there is interest in helping me make this work. Hopefully i will have more specific numbers in the next couple of weeks. I'd appreciate you letting me know if you would be able to help make this happen and, how much you can contribute.

The second phase of this will be a CD release party . . . a day that will be all about DALE just the way she likes it.

Please let me know how you feel about this . . . and PLEASE KEEP THIS A SECRET FROM DALE. When I know this can be done I will let her know but I don't want to bring it up until I'm sure it can happen.

Mary Hirsch (FOD)
maryhirsch@hotmail.com


Mary’s Phase II email:

Thanks to all of you who responded to my prior email. Sorry for the "spam" like email again but it's the easiest way to get information out.

I have spoken to the studio guy and he believes the cost for studio time will be around $700 (it could be less depending on how long the session goes, we just have to tell Dale she has to sing fast and not talk and I'm not sure we can get her not to talk so we might want to plan on $1,000 to $2,000 if she gets going on a story). The piano player hasn't gotten a hold of me yet but I'm figuring another $250-$300 for the sessions.

Matthew (the studio guy) said he could help with the cost of producing the CD and is estimating about a $1 a CD if you order at least 250 (I know a couple of people said they know about this aspect so if you have a better idea of the cost let me know).

The bottom line is... [THIS IS DALE. I LIED. I EDITED. I COULD NOT BRING MYSELF TO KEEP IN THE ACTUAL AMOUNT MARY FIGURED WOULD COVER COSTS. HEY, WE ALL KNOW I HAD TO POST THIS HERE AND IT JUST DOESN'T SEEM RIGHT FOR ME TO POST THAT MARY EXPECTS EACH AND EVERY ONE OF YOU TO DONATE $5,000 APIECE. PLEASE CONTACT MARY ABOUT HER CONVENIENT PAYROLL DEDUCTION PLAN. NOW BACK TO MARY]...we will have more than enough for the studio session and the rest of the money will go to a CD release party.

If you want to send at check to me you can. I'll hold on to it until I have the final figure and need to write a check to the studio/musicians etc. So don't worry if it hasn't been cashed when you sit down and balance your checkbook. I say this because my mother use to get so mad at me for holding on to a check for more than 5 minutes because it threw off her entire accounting system.

If there is any money left after the recording, etc. it will be given to Dale to do with as she pleases. [DALE AGAIN. I'M THINKING "CLUB MED."]

Thanks again for your grand response. If you know of other people who want to be part of this pass on the email.

Now that it seems this is going to happen, I will talk to Dale about it later this week and have her post more information on her website.

My address is: Mary Hirsch, 2915 W. 50th Street #404, Minneapolis, MN 55410.

maryhirsch@hotmail.com

Saturday, May 31, 2003 4:54 PM CDT

Editor's note: I’m sick. Typos don’t count.


I have one word to describe my Xeloda experiences so far: “Bleah!” (For my Jewish readers, the word is “feh!”)

As I type this particular paragraph on Friday afternoon (note that writing these entries is a two-hour to five-day process depending on my condition), I’m enjoying a five-hour stay at Methodist Hospital, am being pumped full of IV fluids, and I’m listening to the dulcet tones of snoring from my roomy Katherine in bed #2.

Today is day number 7.69 of stomach problems that have not quite attained the horrendous status they reached a year ago, but are closely reminiscent. After seven plus days of being unable to keep any food in me, once again I’m forced into the realization that the ability to eat and drink normally should never be taken for granted. I’m led to this discovery through TV commercials. I could easily live my entire life without ever eating KFC chicken strips. Now they've taken on characteristics of gourmet proportions. But the first place I’m headed when I’m better is to Subway for a chipotle steak and cheese sandwich. I was offered a yummy looking lunch when I arrived at the hospital but had to decline since I was restricted to a liquid diet. Today I can crank it up a notch and nosh on a few delicacies like crackers, rice and dry toast. Mmm. Somehow I’m able to hold off on partaking in this feast.

Before all my wannabe doctor readers start to show off their vast pretend medical knowledge by asking questions that show off their imaginary brilliance, I’m already armed with a full list of questions to carry to my doctor’s appointment next Wednesday. High on the list is this: Could the problems I’m having with the Xeloda be caused by the previous stomach damage I had on Taxotere? He’ll probably answer this question before I have a chance to ask it. There was no guarantee that my Taxotere stomach damage wasn’t permanent and to thwart that possibility I’ve been receiving a shot every month for the past year. I won’t know until my appointment on Wed., June 4 how this blip will affect future Xeloda treatments.

When I told you last time that I was skipping over the list of possible side effects on the drug info sheet, there was one that both my doctor and a chemo nurse brought to my attention, an affliction called “hand and foot syndrome” (not to be confused with “hoof and mouth disease” or my usual problem “foot in mouth syndrome”). Hand and foot syndrome affects the palms of the hands and soles of the feet. In my case, the bottoms of my feet turned deep red, and looked -- and definitely felt -- like they were badly sunburned. This malady cursed me in the midst of my trip up north. (“Up north” is a common Minnesota expression which is used to define a several hundred mile area ranging from Anoka to Greenland.)

My buddy Kristi and I rented a lovely two-bedroom cabin on Lake Superior in the city of Castle Danger beginning the Thursday before Memorial Day. The beautiful weather and gorgeous landscape was only matched by the motorcycle gang staying next door who were so considerate of their girlfriends that they would drive their Harleys up the sidewalk past our window to drop them off at their doorstep, protecting the poor women from having to maneuver that pesky 10-foot paved sidewalk.

Kristi and I were tourists extraordinaire, visiting Split Rock Lighthouse, Gooseberry Falls, Betty’s Pies, and every antique store and gift shop between Two Harbors and Tofte. I have to admit that I’d never been in an antique store before [pause while readers gasp in amazement]. It turns out that antiques are not at all what I imagined. Rather than finding valuable collectibles from my grandmother’s youth, I was surprised to find a lot of junk from my youth. Who knew that my collection of Donna Parker books and Beach Boys eight-tracks were antiques?

The only downside of the entire weekend was the several near-heart attacks/near-car accidents my canine-adoring friend Kristi caused.
Krist: [GASP]!!!!
Dale [part frightened/part annoyed]: “What???????”
Kristi: “There’s a doooooooooooooooooooog!!!!”

My feet started burning on Saturday, making it painful to walk. Fortunately this was just a day before the trip ended, so for once I had a malady that didn’t wreck the entire trip. It affected my ability to handle all the stairs at the falls and on Sunday, instead of tromping around Duluth as planned, I let Kristi do the tromping while I only crept lightly.

After a mini-look/see of Duluth, I put Kristi in the driver’s seat of my new RAV, and we headed home. As we closed in on the Twin Cities my stomach was closing in on me. By the time I walked in my door it had totally overtaken me. In attempt to alleviate my pain, nausea, and their accompanying, uh…elimination, I took the anti-nausea drugs I’d been prescribed the week before. Unbeknownst to poor l’il enthusiastic pill poppin’ me, one of the side effects of this pill was restlessness. For a couple of days (coinincidentally concurrent with the times I took that particular pill) I felt and acted like I’d just consumed 78 espressos. I could not settle down…I would go from the couch to the bed to the chair and continued pacing all over the house so much on my still-burning feet that there are now foot-shaped scorch marks covering every walkable inch of my floor.

A visit to the clinic on Wednesday for my weekly blood draw fortunately brought the diagnosis that my extreme jitteriness was a side effect the anti-nausea drug they’d prescribed the day before I left on my trip. (This might explain my ability to keep up with Kristi as we traipsed the north. That, and the fact that I slept until noon every day.) This week I was given a prescription for a new anti-nausea med, which of course I popped just as enthusiastically without reading about the side effects, and so far haven’t had any problems….unless you count the foot that’s growing out of my forehead.

I felt great throughout my hospital visit, and started feeling sick just as I was leaving. I trudged through Target grabbing at juice and crackers and made it home in time run to the bathroom and then collapse on the couch with chills. Luckily my fever never reached 101, so I avoided having to contact the doctor on call. I’ve had some bad experiences interrupting doctors outside of normal business hours, so I dread making such calls. (A few years ago, after experiencing an alarming amount of fluid pouring from a wound one evening, I reached the plastic surgeon on call who, basically said to me, “So? What do you want me to do about it?”)

The fever is gone, and now I’m back to resting on the couch, drinking fluids and experiencing periodic stomach cramps and the after-effects they entail (pardon the pun). I am also, thanks to my computer-savvy friend Diane, enjoying my new wireless Internet connection on my new laptop, which conveniently acts as a large heating pad. I still have some minor burning in my feet which I thought was all that was left of my “hand and foot syndrome” effects until it occurred to me a little while ago that I couldn’t feel my thumbs.

A note for fans of “the ME times:” The 2002 (yes, 2002) issue was in production until my recent adventures interfered. I was hoping for a Flag Day mailing, but I think the best to hope for is a Fourth of July edition, though Labor Day is more likely. For uninformed readers, the ME times is the original “all about me” printed edition newsletter. If you would like to be on the mailing list, please submit your mailing address to me at the email below. Yes, this includes you “invisible” readers too. All subscribers are welcome. Just don’t send me an invisible address.

Wednesday, May 14, 2003 11:40 PM CDT

I have bad news and bad news. Which would you like to hear first? I’ll start with the bad news and then ease you into the bad news.

The MRI I had last Monday showed no change to the tumor in my spinal column; it also showed that spots in my lower back -- discovered in January and deemed “not worrisome” -- had grown. This was enough for my doctor to halt my current chemo and order a CT scan to see what was going on with the existing spots in my lungs and liver. This brings us to the bad news: Today I found out that the spots in both the lungs and the liver had grown. If you think this is hard to read, be glad you aren’t on MY side of the computer monitor!

On Thursday I begin Xeloda, a chemo drug that’s given in pill form. I pop four in the morning and four at night every day for two weeks, then take a week off before starting the cycle again. Because of the way it metabolizes in the body, it’s like getting a continuous infusion of chemotherapy which right now sounds like a REALLY good idea. I barraged my doctor with my usual zillion questions and he deftly handled them all, including the following (heads up, you’re about to gain some nowluj):

Q. Can we ever go back to Taxotere (the drug that worked for two years but caused stomach damage)?
A. At some point he may try Taxol, a drug in the same family, but that isn’t his first choice right now.

Q. What about participating in a clinical trial?
A. There are three phases of trials. Because of the plethora of chemo drugs in my past, I would only qualify for a phase I trial and it’s unlikely I would be accepted in any of those until all other treatment possibilities have been exhausted, which fortunately is not my case yet. I’M feeling pretty exhausted, but it seems that’s not the same thing. The other fact I learned about clinical trials is that they’re generally used to determine the drug dose a patient can tolerate, not to determine whether or not it will save a life. My response: “So when someone dies they say ‘Oh…I guess that was too much!” He laughed, but I think my assumption was correct.

Q. Will any of these drugs ever work to stabilize my cancer as well as Taxotere?
A. (This is my personal favorite of all of Dr. Wilkowske’s As to my Qs.) “If I didn’t think so, we wouldn’t bother doing it.”

If you ever take the time to read the drug information that comes with your prescriptions, it can frighten you out of taking the drug. I decided to ignore all that scary stuff and focus on the paragraph that said “Capecitabine (Xeloda’s generic name) kills cancer cells and shrinks tumors by blocking the process by which the cells divide and are formed.” What a confident statement. It didn’t say that it TRIES to kill cancer cells and ATTEMPTS to shrink tumors…it said it actually kills and shrinks them. Any lawyers reading this (and I know for a fact that there are at least nine of you out there) should take note because I’m thinking that some heads should roll if this drug doesn’t work.

The plan is that I’ll have three cycles of Xeloda (nine weeks total) before we scan to see if it’s working. My guess is that certain pains or the lack of them may signal to me how it’s working, but I’m not known for my razor sharp gut instincts. Usually the news I get is the exact opposite of my suspicions. Though the recent findings are exceptions. I’ve been just uncomfortable enough the past few weeks to not be surprised to hear that the spine tumor hadn’t changed and that cancer was meandering forward.

My chemo process has always included the “ritual” of going into the clinic, chatting with the nurses, cuddling up in warm blankets, working the crossword puzzles in the newspaper, and uh…oh yeah, getting chemo. I don’t know how I feel about my new routine of taking four pills while standing in the bathroom wearing my Dr. Seuss pajamas.

Believe it or not, these Web postings are painstakingly written (no pun intended) and edited before they are made available to the public. I’m not a “stream of consciousness” writer who simply lets the words flow. Probably because I can’t remember any words. I write a lot of sentences with blanks that I have to come back and fill in later, because I can’t think of the word I _____, uh, want. But here’s a small pond of consciousness: I just heard the TV anchorperson say that a child was “expected to make a full miraculous recovery.” Since the editor in me is at work 24 hours a day, it will take great restraint to not send an email to the TV station that says “I don’t think it can be miraculous if you expect it.”

Okay, enough sharing of my one insightful thought at the time I had it. Let’s get back to our regularly scheduled update.

Last Sunday was the Komen Twin Cities Race for the Cure. It was cold. It was rainy. It was cold and rainy. Did I mention it was cold? When I arrived at 6 AM (yes, it’s true, I was really up and out of the house at 5:30 AM) I was certain that it was so cold and rainy (did I say that already?) that not one of the 45,000 expected participants would show. Luckily for the Komen Foundation, I was wrong as usual. Despite the cold, rain, and early hour, Ceridian’s Team Dale courageously and enthusastically ____ed. Attended? Boring. Showed up? Not descriptive enough. Persevered? Yes, that’s the word I was looking for. (Isn't it enlightening to be let in on my writing process?)

A few weeks ago I was contacted by the Race’s P.R. firm and asked if they could keep my name on file to give to the media if/when they requested interviews with breast cancer survivors in conjunction with the Race. Since I’m so shy and unwilling to talk about myself I took .0005th of a second before I said okay. I was contacted about doing an interview with WCCO-TV, our local CBS affiliate, on race day. It was broadcast during their morning show. Though I set my VCR to record the show while I was at the race, I have no idea if I was live or on tape, because I refuse to watch the tape. I’ve heard from a few people that saw me on TV, but I have little interest in seeing myself on television. I really look much better in print.

There were a few adventures leading up to my moment in the spotlight. One was the unsuccessful attempts at keeping my eyebrows from dripping off throughout the soggy morning. The other was coming within seconds of making my Race for the Cure TV debut with a booger under my nose.

As I was driving away from the Race festivities Sunday morning, Kim the PR woman called me on my cell phone to ask if I would do a phone interview with WCCO-AM. (Perhaps the radio people caught my booger-free TV interview and were impressed,) When I agreed, she told me she'd call and tell the broadcaster, Bill, that I would call him in a few minutes. I drove a few more blocks and pulled into a church parking lot, figuring it wouldn’t hurt to get some extra help with the interview. I then called Bill. "Hi , this is Dale Wolf," I said and he responded, "Yes, I was looking forward to your call." He proceeds to chat with me, and I realize afterwards that I was being recorded for later broadcast and THIS was our interview. I thought he was just a friendly guy! It was better this way though; being unaware made my conversation much more relaxed. When the call ended I continued on my way to the Mall of America and tuned my car radio to WCCO in an attempt to hear myself.

A few minutes later the station announced that the CBS news was coming up, followed by local news including "Race for the Cure: A talk with a survivor." I pulled into the Mall ramp, situated my car in prime position to get a clear AM signal and waited. Soon the national news was over and it was time for the local news. Finally, what I'd been waiting for. The major story of the day, complete with my new friend Bill’s big introduction: "Today was the Race for the Cure, and we talked to survivor, Dale FOX..."

Sunday, April 13, 2003 11:56 PM CDT

The MRI of my spine indicated "no change." I thought that was bad news (hoping for shrinkage), my doctor thought it was good news (happy that there was no growth). He said that the fact that it hasn't shrunk doesn't mean it still won't, explaining that cancer cells sometimes take awhile to break off and disperse. (This is not an exact quote…he probably used less words with more syllables.) He couldn’t tell me if the fact that the tumor hadn’t shrunk by now is normal or unusual because they usually don't scan this soon after radiation treatment. Soon? This is soon? My last radiation treatment was Jan. 31. That was a practically a whole season ago. We’re going to check it again in four weeks. A couple of weeks ago I began taking a couple of different drugs to decrease my pain and I’m happy to announce that they are working well. You probably associate the term "pain pills" with "Hollywood celebrity," "addiction," and "the Betty Ford Center," but these aren't those kind of pain pills. THESE pain pills are pills that are used to treat other conditions but somewhere along the way someone discovered that they worked well to alleviate pain in cancer patients. So not only am I in less pain, as a bonus I probably won't suffer from depression, obsessive-compulsive disorder, or epileptic seizures.

While the tumor in my spine isn’t cooperating the way I’d like, my blood counts have and I’m managed to squeeze in two chemo treatments, two weeks apart, just as they should be. In between, I’ve been on the go and have not had nearly enough quality time with Dr. Phil and Alex Trebeck.

Last week I was part of a duo who recorded today's Sunday comics for the State Services for the Blind (SSB), filling in for people that were on vacation. I portrayed an opera singer, Lucy, Dennis the Menace, Frank or Ernest (does anyone know which one is which?), AND a talking pizza. Also last week, my not-quite-a-year of service for SSB was recognized. I received a certificate and a plastic whistle key chain in the mail. The plastic whistle key chain must be the nonprofit version of a gold watch. At least it wasn’t a pig.

Marna revealed the truth in my guest book: The reason I needed a new car was because the plastic stopper on the seatbelt that keeps the seatbelt clip from sliding down was broken. I was sick and tired of having to fish under the seat for the clip every time I buckled the darn seat belt, so I got a new car. After a brief detour into the world of green, I am now back to following my “only blue cars” ownership rule.

A recent eye exam had all the makings of a sketch from the Carol Burnett Show. Tim Conway shuffled into the room, asked me the same questions over and over, didn’t listen to my answers, argued with me about my vision, and scribbled copious notes as I repeated the answers to the questions he wasn’t listening to me answer anyway. During the exam he puzzled over the eye measuring equipment, had to start over a few times, and consulted the contact lens catalog while I sat there. Perhaps to see if they had my size? The only thing missing was a call to Mrs. Huh-wiggins over the intercom.

In other news, I have become a hostage of the Twin Cities’ Susan G. Komen office. I promised them three afternoons this coming week, and I probably won’t be released until after the Race for the Cure. It’s understandable though. My talent for labeling, taping, stamping, and stuffing are beyond compare. Speaking of the Race for the Cure, Ceridian created a spectacular “Team Dale” button. Marna wants to get a supply to sell, claiming she’ll give the proceeds to the Komen Foundation, but I suspect that once she sees their soaring ebay value, she’ll soon be dealing in the seedy underworld of black market “Team Dale” buttons. Stand by for a possible opportunity to get this collectible item before prices skyrocket.

Inspired by Jack Nicholson’s portrayal of a lonely retiree in “About Schmitt,” I’ve visited Ceridian twice over the last couple weeks. To deter me from too many future visits, my friends engaged in a lunch table discussion of Six Sigma training. Yup…that should do the trick.

Next chemo: April 24
MRI: May 5
Doctor’s appointment which will include hearing MRI results, lots of whining, blaming my doctor for things beyond his control, and more of my usual irritating behavior: May 7
May 8: Laurie M. briefly passes through town
Twin Cities Race for the Cure: May 11
Another chemo: May12
Cabin on the shores of Lake Superior: May 22-25
“Team Dale” Race for the Cure button: Priceless

Sunday, March 30, 2003 11:30 PM CST

A recap of the last two weeks:

Monday, March 17: My blood counts were too low for chemo, so I had the privilege of driving to Waterloo without any chemical impairment. Good thing, since I was driving with an expired license. Bad too, since these days I’m more comfortable getting chemo than not getting it.

Most of the following days were spent as the dutiful daughter sitting at her mother’s hospital bedside. There were a few brief excursions outside of the hospital: One to Sears to get mom underwear. Another to SuperTarget for Krispie Kreme donuts. Excited as I was to get a reprieve from hospital cuisine, my Target trip turned out to be ill timed. I returned salivating and ready to dive into the donut bag just as the nurse showed up with a suppository for mom. While mom was learning this was not administered in pill form, I made a break for it, abandoning all donuts in my haste. I returned 15 minutes later, ready to dig in and dad announces that he put mom’s dirty laundry next to my Target bag. Trying to banish the thoughts of suppositories and dirty laundry, I FINALLY attack my donut (after giving one to dad, of course). As I happily munch away, my unusually chatty father asked, “So, did you know that bedsores attract maggots?” I slowly turned and gave him one of those looks that one gives someone who decides to discuss bedsores and maggots while someone else is trying to enjoy a Krispie Kreme. He got the hint and agreed to hold off on the maggot discussion until après donut.

Wednesday, March 23: Visited Dad’s office, glamorously located next to Waterloo’s only adult movie theater. I received a warm welcome from Mary and Maggie, who possess great senses of humor and an astonishing lack of litigiousness. At any other office my dad would be a walking sexual harassment suit, but Mary and Maggie clearly see that he’s more “talk” than “walk.”

Friday, March 21: The day I head back to Minneapolis and the day mom sloooowly returned home, just short of two weeks in the hospital (my family is so competitive). With the help of her snazzy new walker, it took all three of us and some moves on my part worthy of Cirque de Soleil to get her up the two garage stairs into the house. Before I hit the road I amazed my parents with my secret “tool man” skills (apparently they missed this site’s previous story of my welding talents) and attached handrails to the toilet, swapped all the toilet seats in the house to attach a “extension” seat to one toilet, and assembled a shower stool. Then I skipped town before anyone realized that I accomplished it all with Scotch tape. Marna arrived in Waterloo later that day, intent on showing up my handywoman skills; she spent the entire weekend cooking more food than our mother ever made us in our entire lifetimes.

I left mom sitting in her recliner and word has it that she hasn’t moved since.

Monday, March 24: Went back to try that chemo thing again. My blood counts were lower than the week before and I was once again sent home sans treatment.

Tuesday, March 25: Talked to my doctor and told him that not getting chemo was stressing me out. He expressed sympathy and suggested we try again on Thursday.

Thursday, March 27: I passed the blood test and was thrilled to have Navelbine flowing through my veins again.

Friday, March 28: To celebrate the return of chemo and obtaining a driver’s license (which was touch and go since I took the eye test wearing a 10-year-old contact lens after losing one down the drain in my mom’s hospital room), I bought a new car. Well, to be accurate, I’ve PICKED OUT a new car, but it is not yet in my possession. I’m upgrading my 1998 Rav 4 to a 2003 Rav 4. They’re in the process of locating the right color car with the features I want; I hope to be in the driver’s seat in a few days. Lots of people have asked me “What’s wrong with your old car?” and “Why are you getting new car?” The answers are “Not a darn thing” and “Because I WANT one!” I love new cars. And I come by it genetically, so I bear no personal responsibility for this trait.

Today, Sunday, March 30: Slowly emerging from my chemo slump. Just spent almost two full days on the couch. Tonight I decided to attempt to declutter my office/guest room with the hope that I’ll be more likely to start tackling my massive “to do” list if I get the room organized. I moved a few tax files off the bed, found a whole other layer of files, and suddenly writing this update looked like a lot more fun.

Tomorrow, Monday, March 31: Doctor’s appointment. Plan to discuss this low blood count business and his thoughts about it. It’s unusual for me not to know when my next treatment will be, but my chemo schedule has been so thrown off by my blood counts that my future schedule disintegrated. I also intend to discuss with Dr. W. my ongoing burning shoulder pain, which radiation treatments never successfully alleviated. It doesn’t hurt much by day, but if I forget the Tylenol at bedtime (which I usually do) the discomfort usually disrupts my drug-induced sleep (and you know how I need my beauty sleep). In our brief phone conversation last week, my doctor mentioned drugs for nerve pain. You know me…always a sucker for new drugs. They’re almost as fun as new cars. And I don’t have to deal with salespeople that treat me like an idiot in order to get them.

This doesn’t feel like my best posting of all time, but keep in mind that it was written while still in a chemo funk AND in an attempt to procrastinate on other activities. Hopefully it fulfilled the basic update requirements. It’s kinda stressful to have these updates hanging over my head. It always feels good to get a new one posted and know that your unanswered questions have been answered. I’d hate to think of you left hanging…wondering…going on with your day to day activities…not giving me a second thought…having your own life and not being totally wrapped up in mine. Hopefully I’ve temporarily put an end to that.

Sunday, March 16, 2003 11:57 PM CST

Dad: If you want to fly to Waterloo, rather than drive, I'll reimburse you for the flight.

Dale: The last time I checked, flights to Waterloo were really expensive. Just a minute, I'll check Northwest's Web site and tell you how much it will cost...[tap, tap, tap]...yes, I was right...it's $708.

Dad: Drive carefully.


Following Monday's chemo treatment, I'm off to visit the parents. I'll be in the bustling metropolis of Waterloo from Monday until Friday. My mom is currently in the hospital recovering – I hope -- from a broken pelvis. She fell down. There was some pain, crawling, and carrying that followed, and she's been in the hospital since last Sunday. My dad is seriously thrilled with the food in the hospital cafeteria (which says a lot about my mother's cooking), and I can tell I'm in for a rockin' good time.

I’m returning in time to attend the big Avi Baron bar mitzvah festivities on Saturday. Avi and his dad Gary get special mention here because they kindly shoveled up kitty litter (CLEAN kitty litter) after the 40 pound container fell out of my car, landed upside down, and poured out onto their street. Better that the container hit the street than my foot. But I don't quite understand how it takes every ounce of strength I have to lift the “jug ‘o litter,” from the store shelf to my cart to my car, yet it bounces all over the back seat of my car like a ping pong ball.

This is a message for the friend I talked to tonight about my future corruption. It’s occurred to me that in order for you to receive the great honor of finally receiving a mention in a Caring Bridge posting, we’re going to have to omit the nature of the crime we discussed. Besides, I do have a wholesome image to uphold and my readers have certain expectations. Low expectations, but expectations nevertheless. So rather than referring to you as “the anonymous friend who has led me astray” I will refer to you as "my friend Beth Fellman who feeds me milk and cookies." So…how did your first mention feel?

It’s gonna be five whole days (well, three whole days and two semi-whole days) with no email…but I’m sure my friends at my dad’s office would allow me a couple of minutes to view my Caring Bridge guestbook. [Loud clearing of throat to indicate a subtle hint.]

If you haven't already viewed them, or if you viewed them before I got the size and caption wrinkles ironed out, check out the "Dale Day" photos in the photo album.

Viva la Waterloo…or as they say in Iowa: Mooooo!

Tuesday, March 4 2003 11:58 PM CST

Happy birthday to me, happy birthday to me, happy birthday dear meee-eeee, happy birthday to me! I’ve decided that so many of you sing so badly, that I’ll take over the singing from now on. You’re welcome.

I have now finished day #13 in the ranks of the disabled…the unemployed…the “retired”…the non-working schlub…I’m not exactly sure what to call myself. I feel an incredible sense of freedom. Soon I will be feeling an incredible sense of “poordom,” but it seems like a fair exchange for the lack of stress. I still struggle a bit with the concept that I can nap without guilt and that there is really no work lurking in the background. My days of leisure did not get off to a rip-roaring start…the first thing I accomplished was to get sick. After a few days with a fever and a deep, painful cough and then another few days trying to remember what my big plans were for my new-found free time, I am now finally ready for the fun to begin.

The Las Vegas trip was not marred by any injury this time. It was all good. The gang had lots of laughs, lots to eat and lots of shopping. Laurie and Helen provided me with ongoing needed therapy sessions. Bryan and Fred were chauffeurs and parking ramp hikers extraordinaire (it was almost a three mile walk to retrieve cars, which they did constantly), Mark supplied the weekend’s best punch line (suffice it to say that I will never be able to say or hear IHOP with a straight face), and Bryan took the weekend’s worst photograph, which included giving Fred a virtual black eye. There were many highlights (food, food, food, and Mama Mia), no lowlights, and the opportunity to watch Dick kick some hostess butt when the restaurant didn’t honor our reservation time. (It was not only entertaining, but I truly enjoy the taste of spit in my dinner.) I’m the only problem gambler in the group and exhibited the classic signs by only doing it behind everyone’s backs. The one night Laurie found me $40 ahead, she drug me away from the slot machine and forced me to go to bed. I relished two hours at the end of the trip when everyone else was headed out of town; I threw away $150 at my favorite game, Caribbean Stud Poker, but ended up walking away with $120 and a deck of cards. The pit boss slipped me the cards and whispered that I should put them in my purse. I must’ve looked like I was in desperate straits and couldn’t afford to buy them myself for $2 in the gift shop.

I returned from Vegas on Mon., Feb. 17 and my friends at Ceridian threw me a spectacular send-off on the 19th. I’m even fairly sure that it was based in affection and not their excitement at seeing me go. At the end of my final staff meeting Wednesday morning, it was proclaimed “Dale Day.” Yes, they know me well…though not well enough to realize that a true “Dale Day” should have started approximately 12 hours earlier. They passed out Dale Day t-shirts adorned with my photograph and “Dale Day, February 19, 2003.” Everyone was required to wear their shirts to lunch at the Mall of America. Lunch included “Dale Day” table tents and a mild roast (the Dean Martin kind, not the beef kind), written messages from two former bosses, and a touching announcement of the formation of “Team Dale” at this year’s Race for the Cure. After lunch we returned to the office for a reception with a huge sheet cake also inscribed with “Dale Day,” the date and my picture scanned in sugar. I seemed to be the only person to see the obvious connection to my sweetness and reproducing my image in sugar, but it might have just been SO obvious it wasn’t necessary to mention. The cake reception was attended by more of my office buddies and people passing by the room that just wanted cake. When I sat down in front of the pile of gifts it became clear to me that this “all about me” stuff is way better in theory than it is in practice. Five straight hours as the center of attention was even stressful for ME! But it was extremely fun. Kristi, the “Dale Day” director/inventor, with the help of many other co-workers, did a fantastic job of making my last day memorable. (Pictures are posted in this site's photo album. On my computer, they wound up huge. It may take you lots of scrolling to view them in full!)

It was suggested that gifts be creative, and the team rose to the occasion. Kristi made a hardhat with door-stoppers on three sides of it to prevent me from walking into plate glass windows -- an event that occurred when we first moved into our new building and still sends us into fits of laughter and tears. I’m sure that none of you own a Pez dispenser/survival kit…the essential tool to ward off terrorist attacks. A group of co-workers gave me a“day of pampering” at a spa; I’ve never received anything like this before. To me a day of pampering involves Mr. Bubble and Cheet-os. My propensity to buy myself every single “want to have” item I ever talk about caused some anxiety: The group good-bye gift was a pair of very cool Dansko shoes…which of course I had already bought myself a few days earlier in Las Vegas. This was also where I bought an unusual piece of “breakfast cereal” artwork for my new kitchen, causing distress to poor Molly, who created the perfect framed artwork to match my kitchen. All worked out though. My heads-up gave Kristi the opportunity to exchange the shoes for the color I hadn’t bought myself (but really wanted) and Molly’s art looks lovely in a place of honor on my counter. All in all, except for the fact that there was no personal appearance by George Clooney, I couldn’t have dreamed of a nicer last day of my working life.

And speaking of events that exceed my dreams, my excursion last Friday to the Social Security office for a disability benefits interview was also better than I imagined it would be. Located in one of the finest areas of Minneapolis (evident by the metal director and bag search at the door), it was packed with the happiest, friendliest, most successful people in town. From the guy who nearly mowed me down after ranting to the receptionist about the arrest warrant that was affecting his benefit payments to the man who changed seats in order to share his life story with me, it was an adventure. I was in danger of falling head over heels in love as soon as the guy that sat down next to me wooed me with his opening line: “The only place worse than this is the unemployment office!” Ah yes, another dream come true: A man receiving both Social Security AND unemployment checks. His obvious mental illness pushed him from merely attractive to absolutely irresistible.

A door opened and a man stepped out and called my name. I stood up and he directed me to second door, which automatically swung open, and instructed me to go to desk G. Once inside the door I was faced with a long hallway of lettered cubbies, much like prison visiting areas (don’t ask, I just know this stuff). I worked my way through the alphabet to cubby G and the guy met me on the other side of the desk. Surprisingly, there was no bullet proof glass separating us. I handed over medical records, we talked, he requested I send him an original copy of my birth certificate and a copy of last year’s W-2. He then tip-tapped away on his little keyboard to calculate the benefits I would receive, if approved. He stared at the computer a moment and then announced, “this is the most I’ve ever seen!” I bit a hole through both my lip and tongue in order to restrain myself from saying, “Well, that’s certainly surprising based on the people I saw in the lobby.”

He stated his plan to get my application processed as quickly as possible. A perk of terminal illness: It zips you to the top of the heap. I’d been warned by others that this process can take many months, but he told me I could be approved within a week. I am often stunned that many people have not figured out that you reap rewards by being very, very nice to people who are in a position to significantly improve one’s life. I’m sure that had I been rude and unpleasant, my application could easily be buried, misplaced, misfiled, or mis-decimal pointed. I did tell him that I suspected he would note on my application “She doesn’t look sick.” He responded “Well you DON’T!” But I explained to him my profound theory that it’s not about how you feel, it’s how you look. I then told him how earlier in the week I had to drag myself out of bed with my 102 degree fever to go to the doctor, but forced myself to pencil on my eyebrows before leaving the house. I’m sure he was impressed. No doubt this will assure my rapid Social Security approval. He’ll probably even alter the calculations to increase my benefits.

So, “Dale Day #2,” March 4, has come to a close. I invited my friends Vik, Tony and Diane to take me to Manny’s and buy me a huge hunk of cow and they willingly and generously agreed. It was an entertaining evening, as planned. I had a doctor’s appointment and chemo today and my dinner buddies owe a thank-you note to my doctor who decreed “no alcohol for 24 hours after chemo” which lessened my portion of the bill by at least $75.

I did announce that it was my birthday at my appointment today (shocking, because you know how I try to downplay such events) and my doctor presented me with a bottle of water to commemorate the event. Touching. Almost as momentous as “Dale Day.” For a moment I thought he was going to have me drink my chemo, so the fact that it turned out to really be water was a huge relief. Since my blood counts were low and I was sick last week, the two weeks on and one week off chemo thing never got off the ground. The plan going forward is chemo every other week. (Next treatment, Mon., March 17.) As always, I’m just happy to have a plan that I can attempt to work around.

My new chemo drug is administered differently from past treatments. First I get IV steroids for about 20 minutes and then the Navelbine is injected into my port with a syringe over a period of 10 minutes. Quick and easy. I kinda miss the days when I settled into the recliner with a warm blanket for a few hours, but I won’t complain too loudly. Because I was sick and have only had two Navelbine treatments so far, I’m not sure how chemo will affect me yet. But be assured that I will be back here sharing gory details if/when there are gory details to share. Unless anything unexpected happens – which in my opinion will be anything that isn’t currently happening -- my next scans are a few months off. So don’t ask me how this chemo is working, because I won’t know until I’m scanned, or until something hurts. And if something hurts, you know you’ll receive a full report. That’s what makes visiting this site so fun, isn’t it?

Sunday, February 9, 2003 11:50 PM CST

It’s occurred to me that I am being waaaay to accommodating. The purpose of Caring Bridge is to give patients and their families a place to easily post health updates for their friends and relatives. When I discovered Caring Bridge and stopped sending emails, some of you suggested that I continue to send an email to let you know when a new update has been posted, because you probably wouldn’t check the site otherwise. So I agreed to send you email proddings when a new update was posted. Then a few of you mentioned that you sometimes don’t read my updates because it’s so darned time-consuming to travel all the way to the Internet. (How you manage to get to and from work every day is beyond me.) So last time I made that accommodation and included the actual update in my email. But suddenly I realized that something big has been lost here: The fact that this is supposed to be all about me! ME, ME ME! And one of the things ME really likes to do is watch the little counter thingy at the bottom of my Web page to see how many people have dropped by. It’s not like you’re required to visit hourly…yet; I only post every three or four weeks. Am I of such little importance that you can’t take a few minutes every few weeks to drag yourself all the way over to the Internet and look at my posting? Perhaps if you cut back on trips to www.badjokestosendtoyourfriends.com, you could fit it into your schedule. So I am now backing out of my recent decision to include the update in the email, and am returning to simple email proddings. Since I AM in marketing, I will make an effort to include riveting teasers to entice you to my site. I think my willingness to continue to announce my updates via email goes above and beyond the call of duty of a cancer patient. But you know me…I’m a giver.

My dad has asked that I use this space to publicly apologize to my parents for previous remarks that cast doubt on their ability to drive cross-country. Apparently (no pun intended) I’m supposed to apologize because they made it to Phoenix and back home again in one piece? This wasn’t for lack of trying. The day before they reached Phoenix my mother -- who is not supposed to drive long distances because she has a propensity to fall asleep at the wheel -- fell asleep at the wheel. Nobody was hurt, but it was a pretty good try. They both woke up as the car went off the road. If Aunt Betty hadn’t half-spilled the beans to me, I wouldn’t have known about it because mom and dad had no intention of ever telling us about their close call. So besides almost killing themselves, they were going to hide it (i.e. LIE about it) to us. I don’t think this kind of behavior deserves to be rewarded with an apology, do you?

Friday, Jan. 31 ended my three weeks of radiation therapy to the tumor in my cervical spine. They warned me that my pain could worsen after the treatments ended and they guaranteed that I would get a sore throat. As it turned out, “sore” doesn’t even begin to describe the pain. To give you an idea of how agonizing this was, try this: Reach for the nearest glass object. Smash it to smithereens. Swallow all the little shards of glass and make sure they all get lodged deep in your throat…too deep to see, but high enough to feel like your choking on them 24 hours a day. Leave them there for about a week. The pain has finally lessened; now I’m experiencing what others might consider a sore throat, but comparatively speaking, this feels like uh…well, like there are significantly fewer shards of glass in my throat. It’s still a little inflamed, but tolerable, except for major pain when I yawn. So try not to bore me. I’m the only one who gets that privilege.

These postings are traditionally on the wordy side. My plan this time was to attempt to break tradition, but it looks like it may be too late for that. Sure, there is that “delete” key, but how could I possibly edit any of the above spellbinding tales? All I can do is take control of the future. Actually the rest of this entry was written too, but since I didn’t find it particularly interesting, I doubt you would have either. So, for your reading pleasure, I’d like introduce the significantly edited remainder of this posting:

It’s been awhile since I’ve experienced a new and exciting medical torture procedure; the dearth has ended. Bad hoarseness took me to the ear, nose & throat department. Here a doctor weaved a tube up my nose and down my throat to look at my vocal cords while I sat and watched it on a monitor. Happily my vocal cords were clean and healthy, no tumors or Cocoa Puffs were found; the diagnosis was [drum roll please] “excessive mucous.” (It’s not like we all didn’t know I was full of SOMETHING.) Next, a voice therapist wrapped a "sleeve" around my neck and came at me with a long thick metal instrument. I gagged every time she brought it within four inches of my mouth and that mission was aborted. I’m now taking “mucous thinners,” two Big Mac-sized pills twice a day. My voice is not yet back to a level only dogs can hear, but it’s better.

Here’s the big news: February 19 is my last day of work. I’m moving into the ranks of the “permanently disabled.” It’s hard to believe I qualify for a list like that, but I do. Because Ceridian has afforded me great flexibility, I’ve managed to fit work around chemotherapy for almost three years. Though I’ve had the freedom to work my own hours, I still felt pressure to prove to my bosses and co-workers that I wasn’t a slacker. So, while I should have enjoyed sleeping in, instead I lie in bed and think, “I should be up checking email.” Since I worked from home, when a big project was due, whenever I wasn’t working I’d always feel like I SHOULD be working. The flexibility was supposed to allow me to come and go and have some fun, but I’ve grown tired of the stress I put on myself, and the exhaustion of dealing with the effects of chemotherapy and trying to meet project deadlines. My final decision followed a very frank conversation I had with my doctor a couple of weeks ago, where he strongly convinced me that stopping work was the right decision. (I’ll save how he did that for a later posting.) The things that would normally make a decision like this difficult don’t seem to apply to me: In reality, I gave up my “career” when I started my flexible schedule in May of 2000. Having worked at home most of this time, I’ve already become used to the social deprivation people often go through when they leave the working environment. I know I won’t lose touch with my Ceridian friends, because I keep in touch with every person I’ve ever known. The biggest adjustment I will be making is to my income. For some reason disability doesn’t pay as well as actually working. Who thought up that arrangement?

Today I started taking anti-seizure drugs in an attempt to alleviate my ever-worsening facial pain and locking jaw problem. I’ll also be seeing a neurologist and having an MRI (my fourth in a matter of weeks) to take a look at my extremely hyperactive facial nerves. I’ve been complaining about this affliction for months now. It’s continued to worsen despite several trips to the facial pain clinic and an expensive “appliance” to wear over my teeth at night. It’s been a difficult problem to explain and none of the medical professionals in my life seemed to get it…until last week when I had dinner with nurse Robin and she actually witnessed my face indenting and my jaw locking as the muscles visibly spasmed. It just goes to show that there’s nothing as good as a visual aid.

February 14 – 17 I’m going to Las Vegas with the same group of friends I went with in January of 2002. I’m hoping to do it this time without the painful corneal abrasion.

On February 18 I start my new chemotherapy drug, Navelbine. How cute a name is that?

That’s it for this posting’s complaints, adventures, newsworthy tidbits, and things I just had to get off my chest. I’ll have to save news of my video stardom and dry skin for next time. Thank you for making the long, treacherous journey to Caring Bridge and reading all the way to the end. The fact that you keep reading leads me to believe that either you find my story compelling or you enjoy reading about my pain. It’s fine with me if you want to keep the answer to that puzzle a mystery.

Friday, January 17, 2003 at 11:59 PM (CST)

It has been brought to my attention that CERTAIN people prefer to receive my updates in email form, rather than having to go to all the trouble to click or type in a link to get to the Web site. I can understand how time-consuming and exhausting that extra step must be. Based on the fact that these CERTAIN people give me free medical advice (from actual doctors, not just those that play them in my life), buy me steak, and ply me with wine, I’ve decided to bring my news back to email, in addition to posting it at Caring Bridge.

This may be the first time I’ve written anything newsworthy before talking to my parents. They’re currently in Phoenix visiting my aunt and uncle, and will probably read this posting via Uncle Jim. That’s probably a good thing. Now they can just scan over the bad stuff instead of plugging their ears and humming loudly like they usually do.

Last night I had a CT scan of my chest and MRIs of my thoracic and lumbar spine areas and my brain. I was in the MRI tube for more than an hour, but time flies by thanks to the anti-anxiety meds I take. Dr. Wilkowske called me this morning. He did NOT play the "I have good news and bad news" game I like to play but launched right into the good news: there is no sign of cancer in my brain. To say this was a relief might be might biggest understatement I ever made. (Right after "I really like cheese.") Then he went on to tell me that the CT scan showed tiny (emphasis on "tiny") spots in my liver. So a new organ has come to my cancer party. I was so relieved about the brain, the spots in the liver barely phased me. I've been living with tiny spots in my lungs for a two and a half years now, so the liver news didn't sound all that frightening...even though it probably should. Dr. W. had just called me with the results he had so far, and didn't yet have the spine MRI results.

It crossed my mind that if the coming results were bad, Dr. W. might have Dr. Haselow, my radiology oncologist, talk to me this afternoon when I come in for radiation (though I don’t typically see him at my daily treatments). I dismissed this as unlikely, assuming that no medical professionals would get their acts together so well. Imagine my surprise, and dismay, when I arrived in the radiation room and the technicians said that Dr. Haselow wanted to see me afterwards. His nurse brought me into the exam room and told me that Robin was here (in the hospital) looking for me. Now I was tilting toward the edge of panic, since this was definitely beyond the norm. While Robin regularly shows up at my clinic oncology appointments, I’ve never seen her in my hospital radiology world. I figured I must have a week to live.

While we waited for the doctor I was certain that Robin knew that I was about to get really bad news. As usual, my gut instincts proved worthless. Robin, ever attentive to my neediness on test-result day, had simply come to join me as I heard the results from Dr. Haselow and answer any questions I might have about the news I received earlier. Dr. Haselow finally arrived and announced that my thoracic spine was fine and that my lumbar spine showed a questionable area – possibly a cluster of blood vessels -- that he isn't overly concerned about. He called it a "funny" area; when Robin repeated this to Dr. Wilkowske later he said he didn't think it was very funny, but he's not particularly concerned about it either.

The net result is, not much has changed in my immediate future. I continue with radiation until January 31 and then it’s on to a chemotherapy regimen yet to be decided. Of course my body will be rescanned and rechecked on a regular basis, including that "funny" area in my spine. I asked Robin lots of question, the most important one being, will spots on my liver get in the way of my need to abuse alcohol on a regular basis? (This is a big concern because my wine rack is pretty full.) Included in the blood tests I get every couple of weeks is a liver function test. Fortunately my liver has been functioning normally and I can continue to partake in the fruit of the vine as long as this is the case.

So, that's the big scan results story. I'm so relieved to have them over with and to NOT have a brain tumor that I'm not sure how nervous I should be. I think I’m going to pick "not very nervous." I’m becoming a big believer in transference, and am letting others be nervous on my behalf. I hadn’t planned on this, but since that’s what seems to be happening, I’m going with it.

Meanwhile, I’ve completed day five of radiation. The week did not get off to a stellar start. The first day of radiation brought one of our first snowfalls of the season. My decision to leave early turned out to be brilliant because my car wouldn’t start, due to a dome light incident a couple of days earlier. It took 25 minutes to successfully jump-start it. After about 15 minutes with no success, I asked my condo’s maintenance man who had come to my rescue if we were supposed to attach one of the jumper cables to metal on one of the cars. His response was "I like you, but I’m not going to wreck my paint job for you." The clock was ticking closer toward my treatment time and I was about to lose it, but my car finally started, I made it to treatment exactly on time, and no one’s truck was scratched. And that’s the most important thing.

On the first day of treatment I was surprised to discover that after they put the mask over my face, they bolt it to the table. My head is trapped in a cage that’s shaped like my face. After riveting me to the table, the technicians leave the room and the machine zaps me on the left side of my neck and then rotates over me and zaps the right side of my neck. The whole thing takes about 90 seconds. A couple of the women who radiate me (the radiators) are the same women who radiated me four years ago. This time I wear street clothes rather than change into a gown. And instead of coming out to get me, I sit in a remote waiting room where they call me over the intercom. I had hoped that the intercom system was hospital-wide, but it turns out it only covers the small area around radiation therapy. But I hope to convince them to say "Dr. Dale Wolf, please report to the E.R." just once to amuse me.

I was told that the side effects of my radiation treatments are a sore throat and affected taste buds. So far I haven’t experienced these but according to Dr. Haselow they’re still to come. Another side effect they mentioned was that my pain would probably increase before it decreased due to swelling. That one I am experiencing, but so far it’s manageable, and hopefully will remain so. It’s hard to know what to expect because they never say "Your pain will probably increase to an intolerable and agonizing level." For the last couple of nights I’ve had nerve pain across my upper back that hurts especially when I walk. Each step radiates jolts of pain across my upper back. Leaping and skipping are definitely out for now.

After Monday’s treatment (the fateful "dead battery" day) I stopped at Amoco to get my car's battery and electrical system checked. $200 later I headed home. That night I realized that my car now had no heat. After radiation on Tuesday I stopped to visit my new best friends at the Amoco station. The guy insisted that the timing of the sludge build-up that caused my heat to stop working had nothing to do with the check of my battery and electrical system the day before. It was merely a coincidence. Based on the black cloud that’s been hanging over my head these last couple of weeks, I have no reason to doubt this is true. But if any gear-heads are reading this, I’d appreciate it if you would confirm whether I have incredibly bad luck or if the boys of Amoco put one over on me.

I know this is long, but I did promise a Q&A section, and I always keep my word. Your response, on the other hand, was underwhelming. Next time I guess I’ll have to ask YOU the questions. Because you were so uncooperative I pulled questions out of your postings and emails that you didn’t even know you were asking:

Q: My mother tells me that your parents are DRIVING to Arizona for a visit. Are they nuts?
A: Yes they are.

Q: "If my memory serves me correctly, radiation isn't nearly as tough on one as chemo, is it?"
A: Generally this is true, though that depends on what part of the body one is getting radiated and how long the treatments last. At three weeks, mine is certainly do-able. Like I mentioned earlier, I can expect pain, a sore throat and affected taste buds. After two years on Taxotere, I think I can handle three weeks of anything.

Q: So what will this do to your hair?
A: Not a darn thing! The rays are pointed at my neck. So it may affect my neck hairs, but I don’t think anyone will notice.

(A special thank you to Laurie M. who always obliges my requests):

Q: Did the doc think the hoarseness was related to the tumor?
A: He didn’t know, but he hasn’t ruled that out.

Q: Do you want to address medical questions only or would you like to have some obscure ones thrown in just for the heck of it?
A: Sure, throw in some obscure questions. Oh, wait…I thought you said "obscene."

Q: If you could have a trading spaces designer redo your master bedroom, who would you pick?
A: They all look alike to me. As long as it’s not the one who glued straw to the living room walls.

Q: Which Geller annoys you more, Ross or Monica?
A: Definitely Ross.

Q: Have you read the entire Harry Potter series?
A: No, only the first two, but I own the third. I hope to read it as soon as I get through the other 4,329 books on my shelf.

Q: What is radiation like?
A: Quick. Kinda scary the first day, but then it becomes routine. Pretty soon I’ll be administering it to myself.

Q: Do you feel tired afterward?
A: This week I think tiredness was from mental stress. But I’m hoping for the actual physical thing over the next couple of weeks.

Q: Is it uncomfortable?
A: Not if you like having your head encased in mesh and strapped down to a table. Actually I don’t feel anything. Except on Friday when, after they put the mask on me and left the room, my jaw started cramping and my jaw muscles started spasming but I couldn't move my face to alleviate the pain because it was encased in plastic.

Q: What's an MRI?
A: Magnetic resonance imaging. The dictionary definition is "The use of a clear magnetic resonance spectrometer to produce electronic images of specific atoms and molecular structures in solids, especially in human tissues and organs." I think these are the instructions that go with the procedure: Take a long narrow tube. Stuff in one human. Give them anti-anxiety medication because even people who don’t know that they have claustrophobia freak out.

Q: Why do you suppose your memory is bad?
A: Chemo…aging…stress…what was the question again?

Saturday, January 11, 2003 at 08:48 PM (CST)

Here’s something I’ve learned in 2003: Validation of one’s pain is not nearly as fun as I thought it would be.

For several months I’ve been bothered by a pain in my neck [yes, I realize this is an obvious opportunity to insult Marna, but I’ll resist]. In my situation, it’s not uncommon to be a bit hypersensitive to one’s aches and pains, so I often wonder whether I’m crossing the line between "alert" and "hypochondriac." I mentioned the neck pain to my doctor in October and he thought it was probably just a knot in my muscle. The pain has not just persisted, but worsened and now includes a burning pain in my shoulder, so before my doctor’s appointment in December I suggested a bone scan. (After over four years as his patient, I knew he would order one after I saw him, so I figured I’d save some time and get it done beforehand). Dr. W. was sick the day of my appointment, and I saw the nurse practitioner instead who reported that my bone scan was negative, but sent me for an x-ray. Since I had to stay for chemo, as an assertive and self-service patient, I informed my chemo nurse that I was going to get my x-ray before chemo; then I took it upon myself to carry the x-rays back and hand them directly to the nurse practitioner for immediate examination. They were also negative. (That was pretty big build-up with no pay-off, wasn’t it?)

Later I discussed my negative tests and worsening pain with Nurse Robin who subsequently talked to Dr. W. who recommended an MRI, which I had last Tuesday. On Thursday I had a doctor’s appointment and for the first time in more the two and a half years I heard bad news: There is a tumor in the spinal column of my cervical spine that is pushing on my spinal cord. This is an unusual way for breast cancer to recur. Typically metastases is actually IN the bone, but this tumor is not in the bone, but in the spinal canal.

It was quite logical for me to almost convince myself that my pain was simply due to too much time sitting in front of the computer and my complete lack of physical fitness. But "almost" is the key word. My persistence – and what I feared might be viewed as constant whining – finally paid off.

The good news is that this is highly treatable with radiation therapy. The bad news is that it means my chemo is not working. And the news news is that I have stopped chemo and on Monday start three weeks (plus one day) of daily radiation therapy which is expected to shrink the tumor and eliminate my pain. It’s amazing how fast things change. I received the news on Thursday afternoon. On Friday morning, I found myself at an appointment with my radiation oncologist (a perfectly nice doctor who I hadn’t seen since I ended breast radiation in early 2000, but hoped to never see again).

Immediately following the appointment I was prepped for radiation therapy. They made a mold by placing a warm wet piece of plastic mesh on my face and letting it harden. The mask is marked and every time I go for treatment I wear the mask to assure that I am lined up to receive radiation in the same spot every time. More good news: This treatment has an 80 to 90 percent success rate. And even better news: I get to keep the mask when I'm done with treatment.

More scans are set for this coming Thursday evening. MRIs of my lumbar and thoracic spinal areas and my brain, and a CT scan of my chest. Assuming (which we can always do, can’t we?) that nothing ugly is discovered, my last radiation treatment is scheduled for February 3. Since they don’t do radiation and chemo at the same time, my oncologist has a little time to figure out what my next chemotherapy regimen will be. He mentioned looking for a study for me to join. I see him again on January 29 when he'll probably have a plan.

Well, this wasn’t very funny, was it? There have been a few light-hearted moments amidst this not-so-fun diagnosis. Like when the radiation oncologist brought in an oil candle. I looked at it, then at him, and said "I don’t even want to know what you’re going to do with THAT." (Because I complained of hoarseness, he looked far into my mouth with a small dental-like mirror to see my voice box, and he used the candle to heat the mirror first to prevent it from fogging up. A friend of mine thought he heated up the mirror to make it more comfortable for me. Right. There’s nothing worse than a cold mirror down your throat.)

My memory, which has been quite bad lately, has taken a turn for the worse with this latest stressful development. So, if there was anything else to share with you – amusing or otherwise – if it happened longer than five minutes ago I won't remember what it was. (I do recall that five minutes ago I had to look up "spinal cord" in the dictionary to confirm that "cord" wasn't spelled C-H-O-R-D.)

Since each radiation treatment takes less than 10 minutes (probably less than five), there may not be much to report about that. But most of you know by now that I’m not above using my condition to reap "benefits." (Which is why I lead such a charmed life!) So do me a favor. Make it easy on me. Submit questions which I will answer in my next posting. Yes, this is a sly attempt to get email and guest book postings, but c’mon people…I have tumor pushing on my spinal cord…it’s the least you could do!

Tuesday, October 29, 2002 at 01:22 AM (CST)

It’s been more than a month since the last posting. Will this be an unbelievably long entry because it’s been so long since last I wrote, or will it be a really short entry because my brain is only capable of storing about a week’s worth of information? Actually I never know the length until I’m done, so jump on board and let’s see where this ride goes, shall we?

[scanning notes…scanning notes…scanning notes…yes, I do take notes, so if you had any hope that this would be unusually short, kiss that good-bye.]

Here are some notes I found from a couple of months ago enumerating how receiving a fax evolved into straightening out my file cabinet in a mere 15 steps:
1. Contractor calls to say he will fax me my estimate.
2. I realize that my computer fax hasn’t worked since getting a cable modem and start fiddling around with my computer cables.
3. I decide to call my personal ("personal" as in "my very own") computer guru Diane for assistance.
4. I don’t know her work number so I check my phone’s caller ID history to see if it’s there. It’s not.
5. Check my other phone. Not there either.
6. Check my third phone.
7. Discover batteries are dead so caller ID screen is dark.
8. Need to replace batteries.
9. Can’t find battery compartment on phone.
10. Go to file cabinet to search for phone instructions.
11. Realize my "household items" file is in hopeless disarray.
12. Decide to sort all manuals by product type.
13. Assemble new files and make new labels.
14. Change batteries on phone.
15. Try to remember what I was doing in the first place.

[scanning notes…]

Hair. I have hair. (Why do you suppose I needed notes to remind me of this?) It is getting thick, is very curly, and is taupish in color. It bears a striking resemblance to a specific breed of terrier. My hair, not my face. My face more closely resembles a beagle. And my body is definitely St. Bernard.

Words can’t describe how nice it is to have hair again. There are several reasons for my relief:
1. I can now put on any outfit I darn well please without having to worry about what I have to wear on my head that matches. I can actually wear colors other than blue and black.
2. After 27 MONTHS of hats, it is incredibly freeing to leave the house with my head unencumbered.
3. It is also wonderful to go out and not have to endure being looked at by people just a few seconds longer than what would be considered ordinary eye contact. I really don’t think that strangers follow my every move, but when one is sporting the "hat/no hair" look, it usually invites more than the usual attention from people wondering "Is it cancer? Alopecea? Sinead O’Connor?"
4. Related to 3. When one doesn’t look the way one would like to (especially one who is somewhat vain about one’s appearance) it would sometimes take all the mental energy I could muster to leave the house. There were times I would have to take a deep breath, mutter some positive affirmations ("You can do it beagle face!") and force myself out. Inevitably these were the times I’d encounter a small child in the elevator who would stare at me wide-eyed, until his parent cuffed ‘im in the head.

Chemo. Still on an every other week schedule. I’ve stopped flying through it with the greatest of ease. After the last couple of treatments I started suffering some bad bouts of fatigue a few days afterwards. I’ve been so caught up in remodeling I didn’t realize it was happening until it was too late, and was ill-prepared for it, which makes it even harder. That’s not going to happen this time. I have chemo on Friday and have scheduled Sunday as a day for napping on the couch with my brand-new overpriced Pottery Barn blanket.

I am aware that my need to spend the day napping does not exactly inspire a great amount of sympathy, but it’s difficult to describe this level of tiredness. And unfortunately there isn’t an on/off switch on it; Work and life keep happening while exhaustion drags me down physically and mentally. Fortunately, while I can’t control its beginning and end, I always pop out of it sooner or later.

Remodeling. This whole project started two years ago with two loose tiles in my parquet floor. Now I have a new kitchen and living room that are so gorgeous I can hardly stand it. When others tell me it’s beautiful, it doesn’t even occur to me to say "thank you." I can only reply, "I KNOW!!!"

I may also have the world’s only remodeling project to come in under budget. Though that may no longer be true because of the amount of time the contractor had to spend throughout the project scraping me off the ceiling. Pictures are posted in this site’s photo album. You may have to have seen the "before" to have a true appreciation for the "after." Unfortunately Caring Bridge doesn’t give me enough space to post both, but I may try to scan them as pairs and repost them at some point.

Most of the work was done in two weeks. For those of you who are looking a little too closely at the photos, I still have to add tile under the kitchen cabinets and get the door and kitchen wall painted. I’m in the process of picking out plain tiles and working with an artist who will be making some artsy tiles. I’ve pretty much reached my limit in decision-making. The tiles may have pushed me over the edge. The next bag boy to ask me "paper or plastic" will probably get whalloped.

I underestimated how convenient it was that my upstairs neighbor Ruth was out of town and how necessary it would be to have a place to stay during the worst of the remodeling. Once everything I owned was moved into my two bedrooms, there was nowhere for me to sleep. And my living room and kitchen were stripped down to concrete floors and bare walls; there was nothing left.

Bunking at Ruth's, I would traipse between the 19th and 5th floors several times a night to get things I’d forgotten. The truly amazing part was how I’d manage to find what I needed. Eventually almost everything I owned was up at Ruth’s. Mudd, Orange and I had only intended to move in for a week, but it turned into almost two weeks; eventually I had tunnel into my bedroom (filled to the ceiling with all my furniture and much of the contents of my kitchen) to forage for more clothes.

CT scan. My last scan on October 7 revealed "no change." Dr. Wilkowske showed me the films and pointed at all the little spots in my lungs that aren’t changing. It was interesting to see. They were bigger than I imagined, but apparently "small" in the eyes of professionals. I’ll have to take their word for it.

1:20 AM? How did it get to be 1:20 AM? Well, at least I’ve been doing the same thing for the past three hours, as opposed to my usual 15 steps to accomplish nothing. This time I accomplished nothing in ONE step!

I’m not very experienced at eulogizing…or writing about anyone other than ME…but I have to mention Minnesota’s friend Paul Wellstone. Like many others, I was stunned by Paul’s death. It’s hard to believe that a life of such exuberance and enthusiasm can be extinguished so suddenly. It’s a huge loss to this world of a truly caring, genuine individual who was heartfelt in his beliefs and battles on behalf of the regular Joes. See ya later, Paul. I’m sure your dedicated spirit is busy fighting for all the "regular spirits" at the next stop in our journey!

Saturday, September 21, 2002 at 01:45 AM (CDT)

On September 4 I headed off to the big "11 Who Care" gala to watch my friend Jane be honored and constantly remind all those there on Jane’s behalf that if it weren’t for ME, ME, ME they wouldn’t be there there there. We found out that she’d won in June and after months of anticipation, my expectations for the event were exceedingly high. This usually assures my disappointment, but not this time. It was unbelievably fun. That might explain the terrible jaw cramps I’ve been having (story later) -- I smiled from beginning to end. I wore a borrowed sparkly dress, carried a borrowed sparkly purse, and thanks to a teensy hair growth, bared my not-too-sparkly head.

Jane (or as I refer to her "11 Who Care award-winner, Jane Baxter") was well-attuned to the fact that the night was really all about me, despite those 10 other people that kept stepping into the limelight. During the TV broadcast of her extremely eloquent speech, not only did she give me a generous and touching "thank you," but she repeated "Dale Wolf" two more times in succession for good measure. Of course this was enormously amusing to me -- and should have been to anyone else who was able to figure out that Jane has been expertly trained in the concept of "it’s all about me." What I didn’t realize until I got home and viewed the tape of the broadcast was that the camera zeroed in on me as I cracked up over my numerous mentions.

You may have noticed that my Caring Bridge postings usually steer clear of topics that some might view as sad or depressing. While I like to rant, rave, complain and share a variety of trials and tribulations, I still manage to avoid any topics that might be deemed "difficult." (Except diarrhea, which I’ve talked a little too much about.) Well, it’s time to change that. If this is going to bother you, shut your eyes and keep reading.

I have periodically mentioned the support group that I attended for a little over a year and a half. The group consists of seven or eight women with various types of cancer, all in advanced stages. One detail I’ve avoided sharing here is an inevitability that accompanies being part of a group like this. Of the seven of us that made up the group I originally joined, only two of us are still alive. Six women joined after me, and only three of them are left. While many think that the difficulty of this would be overwhelming, truthfully this wasn’t the reason I dropped out. My decision was based on my need to find places where cancer could take up less space in my life. I decided that, based on my lengthy visit to the island of "stable," that one place I could do this was on Mondays from noon to 1:15. Fortunately, though I no longer attend their meetings, the women are still willing to talk to me and catch up on a regular basis.

One of the women with whom I’ve tried to keep up died last week. Kim, 47 years old, was sweet, smart, caring, and funny. She had unfortunately heard "there’s nothing else we can do" too often but kept up a fierce battle with uterine cancer anyway. To prove how truly unfair life can be, a few weeks before she died, she had a stroke that was supposedly unrelated to her cancer.

For a paragraph there I’ll bet you thought that I’d forgotten that this is all about me, but I haven’t. In my constant quest for public attention, Kim is responsible for taking me to a whole new level: My first mention in an obituary. The support group members were named "honorary pallbearers" and all of our first names were included in her newspaper funeral notice. Not only was this poignant, but indicates how important the support group is to many. I was also reminded of this a couple of months ago at Julie’s funeral.

Julie, 42, was quite well-loved judging by the huge crowd at her funeral, yet the support group was singled out for special mention by the priest during the service, and Jane Thompson, the therapist, was asked to speak. Afterwards at the luncheon, it felt like the group was holding court as some of Julie’s friends and family members sought out our table to thank us.

It wasn’t long ago that I’d find any excuse possible to avoid a funeral. I tend to steer clear of places where there’s lots of grieving and crying going on. But once I started going to them, I realized that aside from the emotional toll they take, it’s also an opportunity to see who these women were, separate from cancer. It’s a chance to "meet" the person that their family and friends knew.

Late one Friday night last winter I received a message from Gloria’s friend about her death and the funeral the next night. She asked me to let the rest of the group know. I called everyone in the group and ended up leaving them all messages. (Several of us are becoming reluctant experts at leaving these kinds of messages on each others’ voice mails.) Since there wasn’t much advance notice, I didn’t expect a high group turnout, but I felt a need to attend. (This would be my first "support group member" funeral.) After it was over, as I was walking out of the sanctuary, I discovered Kim and her husband Mike sitting near the back. Incredibly kind Kim and her incredibly supportive husband had driven all the way from Monticello to be there. And again, trooper that she was, Kim also attended Julie’s funeral – oxygen tank in tow -- accompanied by Mike and their daughter.

Sadly, Kim’s was the next funeral. Mike did an amazing job of memorializing Kim. I’ll never forget his opener: "Whenever I go to a funeral and the spouse speaks, I always worry that they’re going to break down uncontrollably, or I worry that they’re going talk about things that are so personal, everyone else is going to break down. [Pause]. Well, stop worrying…and get out your handkerchieves."

Now YOU can stop worrying, and I’ll revert to the usual light-hearted material that’s become the hallmark of this Web site. Does anyone remember the modeling career I struck up a couple of years ago? I was a model in a fashion show benefit for the Susan G. Komen Breast Cancer Foundation. Well, I think my career is finally taking off, as my modeling skills were once again called upon, this time by Sak’s Fifth Avenue.

The Sak’s event (also a benefit for Susan G. Komen) was a riot. In the fun sense of the word, not literally. There WAS a big crowd there, but no riot, fortunately. There were about six of us "breast cancer survivor" models but here's the part I didn't know: There were also PROFESSIONAL models. Real live gorgeous, skinny fashion models. Thankfully I didn't have to immediately follow any of them down the runway. We did share a dressing room, but fortunately shared stalls with "our own kind." But they were all friendly and supportive to the "amateurs," as well as us semi-professionals.

I didn't care for two of the three outfits I wore, but I did an impressive job walking in the stiletto high-heeled boots I wore with each outfit. Even Marna was impressed. (And Marna doesn't impress easily.) They did my make-up, which is always fun to have done by people who know what they’re doing, yet I’m always continually disappointed to discover that my beauty has its limits. I always think that just the right make-over will turn me into Nicole Kidman, but I’m beginning to think this may not be true.

When I went in for my fitting they told me not to wear any jewelry the night of the show because they would accessorize me, but then ended up not having me wear any jewelry. I kept complaining that my ears were NAKED and asking why I couldn’t wear any jewelry. Roland, the "visual designer" finally answered "because I said so!" They handed me a purse to shut me up – or perhaps the intent was to whack me upside the head with it -- but it didn't distract me enough to make me forget that my ears were bare.

Afterwards I walked around Sak's and was treated like quite the celebrity. Lots of strangers approached me to say "good job." I know that they were just being kind to the cancer patient, but that's okay. The woman who was with the emcee, local weatherlady Belinda Jensen, came up to me beforehand to tell me that she was one of the women who was in the doctor’s office last week when I discovered cat vomit all over my shoe. (When I discovered it, I loudly announced it to the rest of the waiting room. Once I saw that I had an attentive, amused audience, I turned it into a lengthy comedy shtick.) Anther woman recognized me from Julie’s funeral earlier this summer. There were a few hundred people at this funeral; I'm not exactly sure what I might have done there to be so memorable, and was afraid to ask. I KNOW I didn’t have cat vomit on my shoe.

All in all, a very fun evening. One of the other NONprofessional (I hate that word "survivor"--to me it infers that those who haven’t survived have failed somehow) models had a camera and they took a group picture (sans the stunning, willowy creatures). I also saw a guy lying on the floor at the end of the runway taking photos (how "fashion show" is that???); if I ever get my hands on any of these, I’ll be sure to post them. In the meantime I’ve changed my name to Dale Christy Wolfington. Watch for my upcoming photo layout…in the State Services for the Blind newsletter.

And if modeling weren’t enough excitement, there’s the REmodeling. On Monday, September 30 my floors and kitchen will be removed to make way for new floors and a new kitchen. So far, things are falling into place so well, it’s a little scary. My upstairs neighbor Ruth is conveniently going to Africa at the same time my home is being disassembled, and has offered to let Orange, Mudd and I move in to her place. So I can move upstairs and vacate the construction site through the worst of it. Jerry, the guy who takes away my furniture when I tire of it to give to people that are moving from homeless shelters into homes, came today to take my old loveseat and some chairs. I told him my kitchen was about to be gutted and he looked at it with great interest and asked what I was going to do with the cabinets. I replied, "do you want them?" He was thrilled. When I told him that he was welcome to cart off my countertops and appliances too, his eyes sprung out of his head like a cartoon character. I guess this is what one calls a "mutually beneficial relationship." My stuff will go to people in need to help them set up new households and I’m getting someone to lug out my counters, cabinets, and appliances for free, plus a receipt for tax purposes. God bless America.

Chemo? What chemo? I don’t have time for chemo. Anyway, the best laid plans…(I love making literary references to works I’ve never read.) The plan was to change my chemo schedule from every other week to two weeks on/one week off. But we hadn’t considered the fact that my blood wouldn’t cooperate. Way back when I first started Gemzar I was supposed to be on a two or three weeks on/one week off schedule but my blood counts dropped so low after week one that we abandoned that schedule. But I guess we assumed that since I’ve been feeling so gosh darn good and my blood counts have been so gosh darn fine when they’re checked every other week, that they had to be good enough to give me treatments two weeks in a row. This was not the case. I just happen to feel good despite a dearth of blood cells. So the two week on/one week off schedule never got off the ground and it’s still every other week until a change is needed. And we’ll know if a change is needed after my next CT scan. It’s Mon., Oct 7 and I see my doctor on Thur., Oct 10.

You’ll be delighted to know that I’ve managed to come up with another one of my unusual medical problems…which of course is usual for me: Excruciating jaw cramps and tormenting facial muscle spasms. My face indents when the muscle spasms, so other people can actually see when they’re happening. They also make my jaw lock. The locking isn’t enough to prevent me from talking, but is enough to help enhance my ventriloquism skills. And the cramps just hurt. I have to stop what I’m doing, grasp the sides of my face, bend over and chant "jaw cramp jaw cramp jaw cramp" until they pass.

My oncologist would take no credit for this latest calamity and suggested I start with the dentist. My dentist pronounced it "not TMJ," and suggested I try 600 mg of Advil three times a day, moist heat, and no chewy foods. I called him earlier this week to pronounce these ideas failures. He then talked to a friend who suggested I go to…get ready for this…who’d have thunk there was such a place?…it must exist just to give me a good laugh and more writing material…the Twin Cities’ TMJ and Facial Pain Clinic. Unfortunately this is "health care" not "dental care" and I have to be referred there by my primary care physician. And in order to get this referral, I have to go see her. I’m hoping that I can get her to prescribe muscle relaxants and never have to visit the TMJ & FPC. This malady is painful enough that I’d rather get it cured than hang on to it just so I can visit this clinic and collect good Caring Bridge material. Sorry.

Whew. This was another long one. Thanks for staying with me. You’re kind, you’re encouraging, you have a long attention span, and you’re either procrastinating on a bigger project or goofing off on the job. Good for you.

Friday, August 30, 2002, really, really late...technically Saturday, August 31, really, really early

Okay, I may have misled you in order to get you here. (That’s pronounced MISS-LED, not MIZLED as some people have been known to perceive it.) My news isn’t necessarily bad…nor is it necessarily good…I guess it would just be classified as some news news. It’s all in the interpretation. Shall I continue to analyze this for a few more paragraphs or get to the point?

On Tuesday, August 20 I had my first CT scan in a few months. The next day, from work, I called for the results, and the nurse (who was handling Robin’s caseload while Robin was on vacation) read me the radiologist’s report off the computer. His report said that the spots in my lungs were "slightly larger." She explained that it’s difficult to know if this means anything without actually seeing the films. I decided I could be patient and talk to Robin, who could confer with my doctor, the following week when she had returned from vacation. I didn’t think that "slightly larger" sounded particularly earth-shattering. But it’s amazing how our minds so often defy logic. While my brain was saying "no big deal," a few hours later my body said "panic attack." I got home from work late, ran upstairs to do my weekly reading to my blind friend Ruth, and a few minutes into reading I started gasping for air and sweating profusely. Intuitive woman that she is, Ruth said "I think you’ve had enough for tonight," and thoughtfully sent me on my way. Happily, with a little dinner in my stomach, a glass of wine in my circulatory system, and a plan to call my doctor in the morning, my anxiety decreased. As luck would have it, my doctor was out of the office Thursday, but he considerately called me back first thing Friday morning. His usual calm demeanor combined with his lack of alarm at the report helped keep me rational, but he hadn’t seen the films yet either, so he couldn’t say what the results meant for my future treatments. He did imply that if it was truly "slight" it might only mean a change in my current treatment schedule, not the chemotherapy drug.

This time my resolve to be patient stuck and I managed to await today’s (Friday) appointment for further news. Upon viewing the films, it turns out that the change was truly minor. Barely visible to the human eye…at least my doctor’s human eye. But from what I’ve learned through my conversations with him and Robin earlier this week, it appears that radiologist reports are pretty subjective. What one doctor sees as "slightly larger" another might see as "no significant change." The thought that occurred to me was this: If every doctor that reviews every scan reports "no significant change," even if it’s accurate, 25 "no significant changes" in a row could add up to one HUGE change when you compare scan #1 to scan #25. Dr. Wilkowske did admit to me that that sometimes happens. It figures that I finally have what I think is an irrational fear that I expect he’ll dismiss as silly and it turns out it’s NOT! But he also claimed that they compare new scans to more than just the most recent scans. Yeah, yeah…sure they do.

So the gist of this is that my Gemzar treatment schedule is changing from every other week to two weeks on/one week off. This is something Dr. W. had been thinking about doing even before the scan, but was hesitant because I’ve been feeling so great. However, my blood counts have been exemplary, so it’s safe to see if we can ruin that "feeling great" thing. I had chemo today (Friday), will have it again next Friday, then I get a break the following week, have it again for the following two Fridays, and then another break. During that break (October 10 to be exact) I’ll have another CT scan, and we can see if anything has changed. If it has, I’ll know to trust the highly sensitive eyeballs of the doctor who read the last scan. But if it says something that’s up for debate again, I may go punch a radiologist.

In other news…or as I say in my book recordings for the State Services for the Blind, "in our last broadcast," I discussed the concerns about my email group names. I did receive some feedback:

From Paul: "I noticed that I'm listed on Part II of your list, but I'm still hoping to make it to Part I someday. If you want to come up with new list names, consider using the titles of the Torah sections for each of our respective bar/bat mitzvahs, or perhaps a more patriotic tone appropriate to the times would lead you to name the lists "George Bush Sr." and "George Bush Jr." This matter certainly requires careful consideration."

I suggested to Paul that his Torah section idea had merit, but when I didn’t hear back from him I’m suspicious that he was just attempting to be clever and has no recollection of his own Torah portion. (I can’t believe no one takes my requests for assistance seriously.) I DO know that I read from the book of Ruth for my bat mitzvah, which – no offense to any readers named Ruth – is not a particularly dazzling list name.


From Vik:
"Please move me to eDale friends--Part I. It's all about you, but I have to be first."

Yeah, I’ll give that great consideration…NOT!

From Diane W:
"As to the Part I and Part II, since I am in Part I and everyone knows that first is always better than the sequel, I have no issues whatsoever with your naming scheme."

From Barbara, posted in the guest book:
"How about the jets and the sharks??? Peanutbutter and jelly?? Heads or tails?? Jeckel and Hyde?? I'll stop now!! Did you pass your test?? Hope so..."

Sorry Barb…all those question marks and exclamation points just make you look desperate.

The leading suggestion, posted in the guest book by Tom:

"Since you asked, and since I always have an opinion, I think the group names should be "my brother Darrell" and "my other brother Darrell.". I'm just not sure to which one I'd like to be listed."

It’s seems pretty obvious to me. Don’t YOU know which one you are?

A reminder to my Twin Cities-based readers: This Wednesday, September 4, be sure to tune in or set your VCRs for the "Eleven who Care" awards on (put on your thinking caps) channel ELEVEN, at 9 PM. My friend Jane Baxter is one of the eleven winners. In case you’ve forgotten and think this is all about Jane, don’t forget…I’LL be there…you might see ME on TV…ME, ME, ME. I nominated her for this award you know, so I think I’ll be winning a special award for the "one who cares the most about seeing herself on the Eleven who Care awards" award. Oh, and the video about Jane might be cool too.

FYI, the Microsoft Word document that contains all of my emails and Web postings is now up to 190 single-spaced pages. And no, despite the fact that I should have learned my lesson long ago, there is no back-up file. If my computer crashes and this document disappears…there will be a heckuvalot of people yelling "WHAT WERE YOU THINKING?" at me.

Dale

Tuesday, August 20, 2002 at 02:20 AM (CDT)

The other day I had a phone conversation with a woman who was recently diagnosed with breast cancer. She feels like she’s become "the woman with breast cancer." She mentioned her concern that she was suddenly being defined by her illness. I replied that that was easy to do (even when Vik ISN’T introducing me to people as "my friend with cancer") and in fact this was a subject addressed often in the support group I used to go to. (Past tense. In March I became a support group drop-out.) I explained to her that I view this as the opportunity to educate people about living with a chronic illness. I told her that as she muddled through this adventure she would meet some people who didn’t have a clue what this experience is about, and that I’ve made it my personal goal to make sure that they get one! So, in case you weren’t aware of it, that’s one of the not-so-hidden agendas behind these Web postings. Another is to keep you up-to-date as to the latest twists, turns, or steadiness of my life, but of course the main thing is to continually remind you, in case you periodically forget, that it’s all about ME!

Speaking of people without a clue, I’ve had a couple of recent encounters with sympathetic strangers who, upon seeing me, want to offer me their support and guidance. A few weeks ago at a flea market a women walked up to me and started talking about my hair (or lack thereof). She was so close to me that I actually couldn’t see her face, and thought it was someone I knew. Once I stepped back to bring her into focus, I realized she was just a stranger who wanted to give me words of encouragement about hair. About a week later I made the mistake of going down for my mail without makeup. I just tied a bandana on my head and got in the elevator. A woman in the crowd on the elevator reached out and said, "How ARE you. I don’t think I’ve seen you before! I know what you’re going through." I tried to explain that I felt fine, that I just hadn’t drawn my eyes on yet. I must look even worse than I think I do, because she didn’t seem to hear my protestations and proceeded to tell me her condo number and ask me to come see her if I "needed to talk." Okay, I know this isn’t a competition, but I think I can write reams about long-term female baldness and chemotherapy experiences. While I don’t know for sure -- since the point is, none of us can really tell by looking -- I’m fairly sure that while their truck has driven off down the interstate and into the horizon, mine comes around the block and runs over me on a semi-regular basis. I have to laugh that strangers presume to understand someone else’s situation just by sight. It gives me ideas though. Perhaps I’m not empathetic enough to strangers. The next time I see a blind person I’m going to let them know that I know exactly what they’re going through, because I had my eyes dilated not long ago. And sitting here writing this entry, my foot has fallen asleep, so I’m definitely prepared to share experiences with the next paraplegic I see.

Some of you on my e-Dale address list read incorrectly into the meaning behind being on E-Dale list, Part I and E-Dale list, Part II. Here’s the meaning: I can’t send e-mails to large groups of people so I had to split the list in two; I cut and pasted names at random and gave each list a very clever name. After I was asked by a few people if it was better to be in Part I than Part II, I tried to think of names that wouldn’t make one list feel inferior to the other. Bert & Ernie? No I’m sure someone thinks one is the superior Muppet. Tweedledum and Tweedledee? No, someone would bristle at being on a list with "dum" in the name. Or perhaps I could call one plastic and one paper, and you could each tell me which you’d prefer. If you have suggestions for list names that would not hurt anyone’s feelings, feel free to submit them.

My new chemotherapy drug, Gemzar, continues to be a joy…if it’s even possible for the words "joy" and "chemotherapy" to appear in the same sentence. At first I had a tendency to experience nausea and vomiting the week after chemo on days I ate too much at meals. The problem is that I would feel so good that I’d forget this happens until it was too late. I made the mistake of eating a big lunch while I was in the office one day. When nausea hit I noticed the serious lack of places to lie down at work. As I sat slumped in my chair in a clammy sweat, I eyed the floor of my cubicle, but before it was necessary to curl up there, I had to desperately race to the bathroom. The pattern is always the same, however. Once the nausea manifests itself in the various manners it chooses, I feel better. And luckily I’ve managed to avoid any recurrences of this problem through the last couple of treatments, so hopefully this is a side effect that has passed.

This new chemo allows me to lead an almost normal life, with the exception of mornings. As my treatment progresses, my morning fatigue gets worse and worse. The past couple of weeks, I have overslept every time I’ve had to be up and out at a certain time. I sleep through two alarms. Actually, it’s beyond sleep. I’m comatose. It is not a matter of just finding bed to be soft, warm, and comfortable place to be; I’m completely unaware that I’ve slept through two alarms. I know, I know, you’re going to say that it probably has something to do with the fact that I stay up until 3 AM every night. Not related. No matter what time I go to bed, I’m still completely unconscious, eight hours later. And efforts to go to bed earlier have been unsuccessful. Even with a healthy dose of sleeping pills, anytime I go to bed before 2 AM, I lie awake for at least an hour or two. So I might as well be up "googling" people from my past and writing pet peeves disguised as Caring Bridge updates.

My new volunteer work recording for the blind is so enjoyable it is testing the boundaries of my enthusiasm. I left the volunteer coordinator a note yesterday telling him that I’m having so much fun I was wondering if I could just move into a recording booth. The person who normally records the Smithsonian Magazine program is back from vacation, and I’m relieved. Last week I was reading an article about Lewis & Clark and came upon the word "Makataimeshekiakiak." Now I’m recording a book and the hardest thing I’ve come across so far has been the Spanish phrase "mui bonita." Unfortunately, I’ve had four years of French, and have never studied Spanish. But I HAVE eaten a lot of Doritos, so I think I’m okay.

The other activity that’s exciting me these days is preparing to remodel my kitchen and put hardwood floors in my kitchen, dining and living areas. The plans are drawn, cupboards and countertops have been picked out, new appliances and light fixtures have been purchased, and I’ve selected the wood for the floor. Work starts mid-September and will take about three weeks. Still on the "to do" list: buy a faucet, area rug, chair & ottoman, pick out back splash tiles, and come into a large inheritance.

When I started Gemzar Dr. Wilkowske told me I would get a CT scan after I’d been on it for three months, which will be the end of August. I realized after he’d left my last appointment that I’d forgotten to ask him about scheduling a scan and asked his nurse to ask him about it. She came to my treatment room to tell me he said "no" to the scan. In the hubbub that is normal around my biweekly chemotherapy parties, I didn’t get a chance to ask her why, but called Robin later. She reported back to my voice mail that Dr. W. said that since I was feeling so well he didn’t think we needed to go looking for something. Yeesh, I thought. If it weren’t for going to look for stuff, we’d never have discovered a lot of things…spots in my lungs for instance. I understand the medical theory that if there’s something wrong, I’ll show symptoms…eventually. The "Dale theory" is that I’d rather know about it, and give them the opportunity to treat me BEFORE I can feel it. It didn’t take any arguing...tomorrow (today to those of you who arise at about the time I go to bed) I have a CT scan. Clearly I don’t need lessons on how to be an assertive patient. So I’m surprised that no strangers have come up to me on the street to tell me how.

I’m told that this next piece of information is confidential. Since there are only a hundred or so of you, it’s not like this’ll get around, will it? Anyway, you’re all tight-lipped and trustworthy. The chemo nurse that had to clean up my Gemzar spill, is required to visit a doctor for tests to establish a baseline in the event that the exposure to my chemo makes her sprout extra limbs or turn into a giant lizard in the future. She was kind enough to ask about MY exposure (lest anyone forget that everything is all about ME) but, not surprisingly, they say that the spill won’t affect someone who’s already getting toxic exposure intravenously on a regular basis. So apparently my transformation into a large amphibian could happen a lot sooner than hers.

This entry is a bit on the long side, isn’t it? And there’s more. I guess it’s time to take the easy, bulleted route:
- I won a Ceridian Star award. It involves money, a picture frame, and great notoriety.
- The treatment area at my clinic may have its carpeting replaced with vinyl flooring, all because of ME.
- Teena’s baby only has one head…currently. See the latest addition to the photo album.

The clock is ticking toward 2:30 AM. I will be incapable of waking up in time for my 10:00 AM phone meeting. Desperate times are calling for desperate measures. I think it’s time to bring in -- I can't believe I need to resort to this -- a third alarm clock. You might think this is my "sign-off" joke, but I’m completely serious. Good thing too, because it isn’t very funny. Though probably funnier to you than to me.

Tuesday, July 9, 2002 (The four-year anniversary of my cancer diagnosis. Where’s the cake?)

Last week I wrote another fabulous Caring Bridge posting. I was living on the edge and typing it directly into Caring Bridge’s "journal entry" screen. Periodically I would "select all" and "copy" so my work would at least be in my clipboard memory in case the Web site shut down or booted me off. After about an hour it occurred to me that historically luck does not shine brightly upon me; I decided to cut and paste my writings into Microsoft Word. Yes, this is where I learned my lesson: As soon as I clicked on Word, the computer froze. I had to shut down and an hour’s worth of fascinating Dale tales went down the drain. I still haven’t mustered up any enthusiasm to write it all again, so I’m going to write unenthusiastically instead…in Microsoft Word…which auto-saves every five minutes.

The top story: I caused a toxic chemical disaster at chemo last week. I was about a half-hour into my treatment when I peered over the edge of my chair and noticed a large wet spot on the rug. "Uh…I think I’ve sprung a leak," I said to any nurse within hearing distance. At first I was misheard which resulted in a hilarious miscommunication…that I can’t recall. The ensuing panic – in Chernobyl-like proportion – must have eradicated that detail from my brain. Or perhaps it was the poisonous fumes.

Two bags hang on my IV pole: Saline and Gemzar. Tubes run from each bag, and merge into one line about halfway between me and the IV pole. My IV pole and I had just rolled to the bathroom and when I returned and plopped back down in the big leather recliner, the tubes wedged in the seat cushion. I pulled them out and didn’t realize that one of the tubes had disconnected. Of course the tube that detached wasn’t the one carrying the plain old agreeable saline, it was the one with the venomous, deadly Gemzar coursing through it.

Following nurse Trisha’s "Oh shit!" there was a flurry of activity. This type of mishap seems to be rather serious and requires quite a bit of attention. Trisha donned protective gear, safety people were notified, the cleaning staff was summoned, the cancer center pharmacist appeared, and my doctor was called (to discuss how to determine and recapture my lost dose). Somewhere along the way they remembered me, moved me to another treatment room and sealed off the contaminated room. Then janitors came a-running with massive carpet cleaning equipment and an armed security guard showed up. (Don’t ask…I have no idea.) After many people spent about 45 minutes scurrying about and disposing of toxic waste, Trisha finally returned to continue my treatment. I had to point out that it isn’t very comforting to see how much protection was needed from the substance that's put in MY body on a regular basis.

Pregnant nurse Teena, who’d been sitting in the room chatting with me the entire time the poison was soaking into the rug, slipped out of range as soon as the accident was discovered. I asked her later if she was concerned about any vapors she may have inhaled. "I’ll let you know if my baby has two heads," she answered.

Aside from the health hazard, it must’ve been about $1,000 worth of drug that soaked into the rug. I’m surprised they didn’t cut out that section of the carpeting, wring out the Gemzar, and give it back to me.

Despite the evident toxicity of this drug, I am finding it much more tolerable than Taxotere. Unlike Taxotere which brought on a pattern of huge ups and downs every three weeks, severe fatigue, and muddled tastebuds, Gemzar is a breeze. Aside from brief periods of nausea and the general malaise that comes with 25 straight months of chemotherapy, I feel pretty darn normal…as long as you define "normal" as curling up in a nauseous ball and vomiting a few times a week.

Local readers may be familiar with the Twin Cities’ NBC affiliate KARE 11’s annual "Eleven Who Care" award. This award goes to individuals who engage in exceptional volunteer efforts in the community. I nominated my friend and co-worker Jane Baxter, who is a volunteer extraordinaire. We found out a few weeks ago that she won. I don’t know about Jane, but this is the most exciting thing that’s happened to ME in awhile! She will be honored with 10 other winners at a televised black tie awards reception/dinner on September 4. She has generously invited me to sit at her table where I will have to engage in great self-control. My natural tendency, of course, will be to leap in front of the TV cameras, ogle celebrities, and make sure the focus is on ME. Between now and September 4 I will get some psychotherapy to get a handle on this problem.

Been wondering how my hair is faring? Do I care if you’ve been wondering? I’m going to tell you anyway! Not as well as I’d like, but better than it was. There appears to be a fractional growth and I’m hopeful that it may slowly be thickening (a term I use rather loosely). In the meantime, I’ve amassed a healthy, bordering on neurotic, bandana collection. On ebay I purchased a set of bandanas in 21 different colors. My current favorite head attire is a "bandana hat," a bandana with a baseball hat brim. (I’m such a good customer of this Web site, he sent me a free "stars & stripes" version to adorn my head for the Fourth of July.) In case your brains can’t capture how many different colors of bandanas exist in the world, I’ve added a photo of my collection to this site’s photo album. (The light blue is missing…I forgot to take it off my head for the photograph.) While my hair growth may be a figment of my imagination, I am not imagining the light fuzz that is sprouting from my eyelids. In fact, I actually have ONE eyelash that is normal length! Only one, but I may have to run out and buy some mascara.

I did something very Minnesota-ish on fourth: I went to one of our 10,000 lakes as a guest of my friend Annette. What a great day. I love large bodies of water. Well, not swimming in them, but looking at them…floating on them in boats…parting them…walking on them. The sun, on the other hand, I’m not that fond of. It makes me hot. It’s cancer-causing. It’s wrinkle-inducing. It burns, albeit selectively on my body. I’m not sure how I can sit in the sun for two hours and only burn my knees. I think I might have exceptionally large kneecaps.

Last weekend I went to Iowa. It’s fun to visit. My parents and their friends always treat me like a soldier returning from war. (Which, in a metaphorical sense, I feel like I am some days.) My sister Caryn was there too, but no one noticed because I was too busy stealing all the attention from her. Marna wasn’t there because she wasn’t invited. (I had to throw that in before she posted it in my guest book.) My mom, Waterloo’s own Julia Child, slaved in the kitchen for hours to make me a good old-fashioned home-cooked BLT. Under great duress.

My latest volunteer adventure is recording for Minnesota’s State Services for the Blind. I passed a grueling application and audition process and started recording yesterday. At yesterday’s training session I was told that they were happy that I checked the box on the application indicating I am willing to read "R" rated material. They started me out recording Smithsonian magazine while the regular reader is on vacation. I’ll probably be switched to pornography when she gets back.

That’s all for this time. Having to write this twice made it even more arduous than usual. To make it even, you should read it twice.

Monday, June 10, 2002 at 11:59 PM (CDT)

The plan was to write a few tidbits to post tonight but I was momentarily distracted by Yahoo games and several hours disappeared. I was about to go to bed and just remembered what I sat down at the computer to do three and a half hours ago. Scary. I must talk to my doctor about these blackouts. So I’m going to do some quick jottings, which will work to your benefit: I’m not going to spend extra time making this artistic, this is purely news you can use, or not:

- On Tues., June 11 (at 9 CST I believe), which will probably be "tonight" when most of you read this, Dateline NBC is featuring a women who goes to the same clinic I do. I have no idea what they’re going to show or if people I know will be on it, but I guarantee that it will be a heart-wrenching story, so have Kleenex near by. I’d tell you more about it, but that would take away from my mission to write this quickly.

- A friend alerted me to the fact that pornographic spam is being sent to people on my e-Dale address list from addresses that are SIMILAR to some of your addresses. After she told me, I received one myself. I don’t know how this happens, but I can probably blame my former ISP, spamtastic AOL. I can attest to the fact that people in my e-Dale address book are not sending pornography to others in my address book…though my friend Tony says it’s okay if you are.

- My friend Mary Hirsch, writer/comedienne/performance artist needs lots and lots bras for her performance in Minneapolis’ upcoming Fringe Festival. If you have any unwanted bras looking for a home, Mary wants them. Unfortunately I don’t have her original email request, so this is just a heads-up. Let me know if you have any donations and I’ll give you mailing info. The benefit to you will be a credit in the program and knowing that you’ll provide a "boost" to the arts. (You KNEW I couldn’t avoid that, didn’t you?).

- Had chemo last Wednesday. All was going fairly well until Saturday night and Sunday, when my stomach/nausea/cramping troubles made an ugly reappearance. I briefly went back to the good old days of moaning, groaning, and running to the bathroom. While this isn’t a very exciting medical update, I really hate it when people think I might be having fun when I’m not.

I’m even too tired to rave about my exciting new high speed Internet connection and my collection of new email addresses. Good night.

Saturday, June 01, 2002 at 09:34 PM (CDT)

Apparently I’m not whining enough. I had no idea that if I didn’t continually inventory previously-mentioned side effects on this Web site, people might mistakenly believe that they no longer existed. Thank God my cousin Julie set me straight with a query so I could right this horrible wrong. But here’s a little lesson in chemo logic I’ve learned from my experience: Often a chemo side effect does not get better while on the same treatment. Now that I’m starting a new chemo drug, I’m hopeful that the current crop of side effects will go away. Here’s a list of past complaints and an update on where they stand at the end of Taxotere and the beginning of Gemzar:

-- Dry, thick fingers: Even dryer and thicker. After nights and nights of coating them in grease and covering them with gloves, they’ve worsened. Brushes with anything but the softest fabrics make me jump out of my skin. I still deal with the ongoing challenge of making my digits grip things. Now that I’m no longer curling up on the bathroom floor and writhing in pain, I’m crawling around searching for the pills and contact lenses I drop several times a week.

-- Watery eyes and runny nose: Waterier and runnier than ever. My nose runs uncontrollably and unexpectedly. Additionally my eyes are itchy, but rubbing them with fingers that resemble sandpaper is not exactly the same as the soothing relief of Visine.

-- Wet eyebrows: Still wet, still annoying, and still impossible to make anyone understand.

-- Short, thin, ugly hair: A couple of Taxotere treatments ago it began coming out in what would be clumps if there were enough hairs to clump. It is still free-falling today.

-- Stomach: Improved, but not back to normal yet. I did achieve a record this week however: 39 1/2 hours without a "bout." I might’ve made it longer if I’d avoided the Personal Pan Pepperoni Pizza for lunch on Friday. But it took even less than that for a setback today, so I refuse to feel guilty about the greasy pizza.

Any dreams that a change in treatment will bring improvement to my miserably drippy face and malfunctioning fingers have failed to come true yet. But the three shots a day I still give myself for my stomach could be helping…or not…I have no idea what they’re doing actually, besides turning me into a syringe-filling, shot-giving maniac. An admirable talent, almost on par with my three-leafed clover tongue.

The hair impairment has me spending an inordinate amount of time worrying about how to dress my head. I have a larger collection of hats than Minnie Pearl (when she was alive, not now), but I really hate the "hat" look. I have mostly resorted to baseball hats, but during balder times, like now, they make me feel a little too exposed. Because I like to consider myself a person who’s continuing evolving, I periodically change my favored look. My newest style is to wear a bandana underneath a baseball cap. This gives that sporty look – no doubt I’m often mistaken for an athlete – yet provides maximum coverage. Sort of a like a maxi-pad for my head.

If I hadn’t started writing everything above a couple of weeks ago, you’d be staring at a blank screen right now. I’ve ceased to find anything amusing. I feel sapped of physical energy, creative abilities and unable to muster up the capacity to be my usual charming, joyful self.

My first Gemzar treatment on Wed., May 22 wasn’t very dramatic, nor was it quite the non-event others professed it to be. I experienced some brief bouts of nausea the next day, and three full days of fatigue to the point of napdom. I thought I had popped back to somewhat normal by Sunday, but only because I was pacing myself. (i.e. I have very little social life.) I found myself back in the throws of exhaustion on days that I pushed myself to do more than walk from the sink to the silverware drawer. On Wednesday I reported back to the clinic for my second Gemzar treatment, however I failed my white blood cell test and wasn’t allowed to have treatment. I keep forgetting…is this a good thing or a bad thing? Despite not having treatment, I still feel exhausted and lackluster. (Is that even an adjective? I’m too tired to look it up.) I really have no idea what "normal" feels like anymore.

I’m scheduled to have chemo this coming Wed., June 5, have the next week off, and then a doctor’s appointment and chemo the following week. Plenty of time before I see my doctor to prepare detailed notations on my nonstop aches, pains, twinges, and miscellaneous whines. Enumerating these things is exhausting and time-consuming in and of itself. It’s amazing I even find time to fit treatments into my schedule.

Okay, enough about just me. Things have happened to, or involved, other people since last I posted: Paul is engaged, Peggie & Bill had a baby boy ("Now on the pitcher’s mound, Eddie Carrothers!"), Kristi moved, Mary H.’s hangnail is much better, Molly made me click over 1,000 times, high tech Jeff’s cell phone has trouble distinguishing between "Dad" and "Dale," and Gayla taught me how to beam. I’m sure if I forgot anyone, Marna will post it in the guest book.

Thursday, May 16, 2002 at 11:23 PM (CDT)

Good-bye Taxotere. Hello Gemzar. A meeting of medical minds concluded that my many weeks of stomach issues (which is my very, very polite term for "chronic diarrhea") is a result of nerve damage from nearly two years of Taxotere. Despite the three shots of Sandostatin that I give myself every day in an attempt to control it, it will only get worse as long as I’m on Taxotere. So it’s time to move on to another chemo drug.

I started writing a little "Good-bye Taxotere" ditty for you, but thought it was more important to write this update than compose a musical tribute to a chemotherapy drug. But melody and lyrics were spinning uncontrollably around in my head, and I had to let them out:

(To the tune of "Yesterday")
Taxotere…you made my stomach flip when you were near,
now it’s Gemzar that will soon be here,
And it’s good-bye to Taxotere.

Stomach pains, still are jabbing at my abdomen
Or is shots of Sandostatin?
Oh Taxotere, you’ve been a pain.

Why you had to go even though
You seemed to work?
‘Cause there’s something wrong so we say "so long" to Ta-a-a-a-axotere.

Taxotere, we were friends for almost two whole years,
But you’ve caused me major bathroom fears,
So there will be no Taxo-tears.

It’s time to go even though
You seemed to work
But there’s something wrong so we say "so long" to Ta-a-a-a-axotere.

Taxotere, we’ve travelled together so very far
As a chemo drug, you’re above par,
But now it’s time to try Gemzar.
----------------------------------------------------------------------
Okay, okay…enough trying to rhyme chemo terms. I’m just glad I’m not on Adriamyacin.

My stomach is improving, but not back to normal. Whether it ever goes back to normal remains to be seen, but I consider it a major improvement that food now stays in me for a matter of hours and not seconds, I can leave the house for longer than 15 minutes, sit in restaurants and eat like an almost regular person, and not cringe every time I put food in my mouth because of the inevitable 18 trips to the bathroom that will soon follow. The fact that it’s now only four or five trips seems like Shangri-La. I could probably reduce that number, but it serves me right when I make decisions like I did tonight and eat dinner twice.

I have no idea how much longer I have to give myself shots. The morning and evening ones aren’t a problem, but that middle one can be a bit inconvenient now that I actually leave home periodically.

I start Gemzar next Wednesday. I'll get it once a week; treatment lasts about an hour. Usually it’s administered on a three on/one off schedule: Once a week for three weeks, than a week off. It’s supposed to be pretty well tolerated. Its biggest side effect is decreased blood counts. I talked to a friend today who was on it and she claimed to suffer very few effects. No doubt I’ll manage to alter existing statistics in that regard.

The brain MRI showed something serious: a sinus infection. Pretty high tech diagnostic tool, huh? I actually had a sinus headache while I was in the MRI tube, but I wasn’t thinking about my sinuses. I assumed the machine was malfunctioning and my head was about to explode.

That’s all for tonight. I’ll be back next week with a litany of uncommon Gemzar side effects that the doctor didn't mention because they never happen to anyone. [Gee, they didn’t mention that my tongue would thwell...]

Tuesday, May 07, 2002 at 12:03 AM (CDT)

This posting was off to a good start, but it sat unposted for a few days when I took an unexpected trip this past weekend to Methodist Hospital where I spent a few days luxuriating in all the amenities the place had to offer: Continuous IV fluid drips, toilet collection cups, lots and lots of shots (that half the time I inflicted upon myself) chicken broth and other fine liquids, including all the Boost energy drink I could consume. The impetus that put me there in the first place was vomiting meals on Thursday night (six hours short of reaching a "two days with no stomach bouts" record) and Friday morning. Chances are if I’d planned my vomiting earlier in the week I could have gotten by with a visit or two to the clinic rather than in the hospital, but timing is everything. I came home on Sunday afternoon, just in time to wave good-bye to my weekend, but since this was a"chemo low" weekend, I didn't really miss much.

As much as I enjoy attention, I think I’ve finally reached my doctor saturation point. On Friday night I saw one oncologist, on Saturday and Sunday a different one, on Saturday night Dr. Shaw, the hospital G.I. specialist finally made an appearance (a main reason for my visit) and today I lucked into a visit (due to a cancellation) with Dr. Stahnke, the G.I. specialist I saw when I was in the hospital a couple of weeks ago.

So many doctors and so little answers. Dr. Shaw asked questions aloud to himself and used lots of 12-syllable words. I missed a lot in my note-taking attempts, but I did get down "derangement in neuromuscular function due to treatment." i.e. he thinks that chemo is messing up my tummy. This is just an educated guess, and there’s no way to know for sure that this is the case. (But the fact that every torturous test I undergo comes up negative probably supports his theory.) My potpourri of doctors also think he may be right, but I haven’t discussed this yet with a doctor I’ve known longer than two weeks. Dr. Shaw also thought that the tincture of Opium that I was taking to HELP my stomach was what was making me throw up. Though he probably said something like "the indication of regurgitation substantiates your rejection of this prescription."

So, as Dr. Shaw would ask, "What does this mean?" Dunno yet. Right now (well, not this very second) I’m giving myself shots of a drug called Sandostatin twice a day. As of last night, it was not working, so today my dose was doubled. Future decisions will probably be made based on if this med works and discussions with my oncologist. Stand by.

It’s now going on seven weeks since I’ve last been able to eat like a normal person for more than a couple of days at a time. It isn’t all bad. I’m happily fitting into jeans that I haven’t squeezed into for a year or more. And I do so enjoy the late-night "bowel updates" I leave on Nurse Robin’s voice mail on an almost daily basis.

In between hospital holidays, I’ve gathered a few good stories. Hilarity continues to abound…mostly. I even have a couple of stories that have nothing to do with illness, but since this Web site is for patient updates, I had to begin with health stuff in an effort to fool the Caring Bridge police into thinking that I actually use this site for its intended purpose, rather than as a venue to entertain friends and relatives.

Another plague that’s recently descended upon me are distressing short-term memory problems. During last week’s trip to Des Moines for my 20-year college reunion I asked Laurie, who flew from L.A. to Minneapolis to make the road trip with me, if she had remembered the Trivial Pursuit game I bought which she kindly offered to pack in her suitcase. She gave me one of those tilted-head "are you insane?" looks which left me puzzled. "Why won’t she just answer me?" I wondered. After a few moments of silence she replied, "That’s the THIRD time you’ve asked me that." Though I had no recollection of asking her the question previously, it made for the first of the weekend’s great "laugh till we cried" moments.

Unfortunately it wasn’t the only memory lapse I’ve experienced recently. My friend Peg was in town to be the guest of honor at a baby shower. (She visited me the day I came home from the hospital the first time...and her "hostess with the mostest" spent the entire night expelling dinner in various ways and lying on the bathroom floor moaning in pain.) I didn’t go to her baby shower two days later because of a fear of travelling more than six feet from my own toilet. And no matter how hard I wrack my brain, I can’t remember if I’ve talked to her about her shower since then. Realize that having to continue to ask people about basic things I think I should already know gets somewhat embarrassing.

Robin expressed concern at this latest predicament; I brought it up to my oncologist last week. He reminded me (of course) of the real "chemo brain" syndrome, which often appears down the road after high doses of chemotherapy. And if I recall correctly I have had gobs of chemotherapy dating back to December of 1998 when they did that high dose thingy. My own INCORRECT diagnosis of this problem is that it began right after taking the amnesia-causing sedative before my colonscopy a few weeks ago. In fact, I’m convinced of it, since I don't remember having this problem before then. [Parumppump.]

Another thing I tend to forget is that every mention of a symptom, no matter how inane, nets me a test. I’m having a brain MRI on Tues., May 14 at 4 PM. Marna kindly requested that I post the MRI date here so that she won’t keep asking me when it is. Experience has taught me that posting dates on this site doesn’t seem to help anyone remember, but I guess I’m the last person to point fingers at other’s memory challenges…or your inability to wade through my massive tomes to find any worthwhile information. And while I’m sharing dates (and in an effort to confuse the already-confused by tossing out more data), after a six-week "vacation," chemo resumed on Wed., May 1. I hope your May basket was more exciting than MINE. My next treatment is scheduled for Wed., May 22, unless my stomach continues to interfere.

After the "almost took a chemo pill" episode from my previous hospital experience, I painted the drama as somewhat hair-raising (don’t say the obvious). Later I explained to Marna that I don’t tend to obsess about things that "almost" happen (for example, I would never say "I drove over the bridge only seconds before the accident," or "I walked by the building only minutes before a piano fell out of the 20th floor window" or "I was in New York City only three years before the World Trade Center attacks"…you get the idea). The fact that I "almost" took a chemo pill meant for someone else doesn’t really seem that dramatic to me since I didn’t actually take it. (During my most recent hospital stay they tried to give me an anti-psychotic. But at least there was a possibility that this one was correct.)

But forget that "tend not to obsess about things that ‘almost’ happen" tradition (I did, and it has nothing to do with my memory). Last Tuesday I took off on foot for Tom Thumb on an orange juice run. Dreaming of the many glasses of Metamucil the orange juice would give birth to, I glanced left (as I always do), stepped into the crosswalk on the "Walk" signal and strolled obliviously across the busy intersection. I didn’t notice the truck barreling through the red light aimed directly at me until I heard the screeching of its tires as it came to an abrupt stop only about 10 feet from me. This was definitely the closest I’ve ever come to seeing my life flash before my eyes. For the next couple of days, every time I replayed the incident in my head, my hands involuntarily rose to cover my mouth in horror. The driver was in this same pose as she apologized to me. Thankfully the shock is starting to fade. (Surprise.) You might think that my everyday life with cancer has to be more traumatic, but during this entire cancer escapade, I don’t literally see the truck that’s running me over!

Two brief highlights of my Drake reunion weekend:

After years of reminiscing about our favorite pizza from our college days (when Dick made us pay based on the number of slices we ate) we finally reconvened at Noah’s. Note the name of the place again: Noah’s. In our dorm days we would wake up Dick, our only friend with a car, and make him drive us to Noah’s. Our gang talks and dreams about Noah’s every time we get together. Noah’s has had monumental significance in our lives. It was never "let’s go out for pizza;" it’s always been, "let’s go to Noah’s." So finally, after 20 years, we were back at this site of historical significance (both for us and for fans of the Bible). As we were leaving Laurie stared at the large painted wall mural and asked "What were penguins doing with Moses at the parting of the Red Sea?"

I found what I thought was a human body part on my bathroom floor at the West Des Moines Marriott on Saturday night. My first fear was that it had fallen off of me. (I had just sneezed and thought an organ might have shot out of my nose.) My second fear was that something violent had occurred in my room while I was out; I peaked in the closet and behind the shower curtain looking for a corpse. When Laurie and Helen came down to my room I fished the offending "organ" out of the wastebasket to show them. It turned out to be a smooshed worm that hitched a ride on my shoe.

Before my parting words, a note: If you aren’t in the habit of checking this site unprodded, it’s possible that you missed a posting. If you care, check the Journal History. If you don’t, I’ll figure it out when you fail the pop quiz. If you can live with the repercussions, so can I.

Now I shall end with an insightful quote. My "Aristo pie" friend Marie, the sister of my high school friend Sandy, passed along the following e-quote which she received from Sandy. This is good, sharable advice from Sandy’s four-year-old son, Daniel: "IF YOU STEP IN IT, DON' T LICK YOUR FEET." A particularly sage piece of wisdom which I generally follow -- worms or no worms.

Wednesday, April 24, 2002 at 11:09 PM (CDT)

Congratulations! YOU actually came here in search of an update without being nudged to do so. Very impressive! I think I'll reward you with a brief update. (The reward is the brief part, not the update part.)

Though I'm still battling stomach problems, I am doing much better. Some of what goes in has been staying with me for periods of time I can count in hours instead of minutes. Though the cramps, nausea, vomiting, and races to the bathroom have decreased, I haven't yet reached my goal which is zero cramps, zero nausea, zero vomiting, and walking into a bathroom using a normal gait.

Just when I think I've neared this goal, my stomach turns on me. I had hoped the antibiotic had kicked in, but if it has, it has a terrible sense of humor. Today I started a new drug: Tincture of opium. Opium drops. Far out. To get in the mood, I've started burning incense, wearing tie dyed clothing and playing Bob Dylan records. So far this hasn't done the trick either, but perhaps I should give it longer than 11 hours to work.

My plan is to head to Des Moines on Friday for my 20-year college reunion. The only thing that would stop me is a total relapse with this stomach stuff. As long as things stay on an even keel, I'm outta here. My friend Laurie is flying in from L.A. to make the Des Moines road trip with me.

Laurie and I met at the very beginning of freshman year when she was blonde and I was...well you can see for yourself; there are new pictures in this site's photo album.

Go Bulldogs!

Saturday, April 20, 2002 at 01:42 PM (CDT)

I came home on Friday. I'm sicker than I was at the hospital. The tuna salad sandwich I had for dinner was a very, very, very bad idea.

In a not very fun game of archery, the GI doc is slinging some medicines at me, the human target. Right now I'm taking three pills: an antibiotic, a pill to control stomach acid, and a pancreatic enzyme replacement. So far they haven't come close to a bull's eye. I don't think the arrows have landed anywhere near the target. From hearing stories from other people and scouring the Web using search terms I never thought I'd use, it has occurred to me that they never will.

Yesterday at the hospital a nurse came in to give me meds. The pill didn't look familiar, so I asked what it was. She replied "Your chemo." Since I wasn't there for chemo, nor does my chemo come in capsule form, it sent a little shiver of terror down my spine, wondering what might have happened if I'd taken it without questioning. (And thinking about all patients around me who DO take medication without questioning.) The nurse looked pretty horrified at her mistake too, which I ended up sharing with the head nurse who came to see me when I mentioned the experience to my oncologist.

The head nurse and I were already acquainted, however, due to complaints I'd voiced to her earlier in the day. Her first comment to me was "When you're well enough to complain about the care, it's time to go home." This didn't bode well for a reasonable discussion, but she turned out to be much kinder than this remark indicated.

As far as hospital stays go, on a scale of one to 10, I'd give this one a 2.8. My last visit, two years ago, was a 10, so there were pretty high standards to live up to.

On Monday the GI doctor is going to call me for a report on how our science experiment is going. On Wednesday I see my oncologist to follow up and discuss when we can get this chemotherapy show back on the road.

In the past, when I thought about someday getting a "chemo vacation," this isn't exactly what I had in mind.

Thursday, April 18, 2002 at 10:52 PM (CDT)

I wasn't allowed to prod you to this site via my usual mass notification process. AOL made that impossible. Through repeated tries to access my account, I was told my password was invalid. When I called they informed me that my account had been disabled. When I asked why, she tappity-tapped away on her computer and then asked "Did you recently send an email to 101 people?"

It turns out that a volume of 101 is considered “bulk email” which AOL has a policy against. I explained that this wasn’t spam (well, in MY opinion it isn’t), but an email to people I knew.

“Are the emails about you?” she asked.

“Yes,” I replied.

“Are they to update people about you?” she asked.

Gee, do I SOUND self-centered? I thought. “Yes,” I responded (to her question, not my thought).

“We’ll have to approve you for sending ‘bulk emails,’ but you won’t be allowed to send them for 48 hours.” Then she gave me a temporary password to allow this criminal to regain access to her account.

Yee-haw, bulk email priviledges. I can’t wait to figure out ways to abuse this as a big “thank you” to AOL. Perhaps I’ll go crazy and increase my e-Dale notification list to 102.

At this very moment I'm listening to Martin Short tell David Letterman (in a repeat episode) about going in with his friends for a "group colonoscopy." How come none of you suggested this? He and his friends apparently had a really wonderful time. And so did I (allbeit alone).

I was definitely right about how great sedatives are. The colonoscopy proved to be amazingly survivable. I remember the doctor putting the sedative in my IV and the next thing I heard was “all done!” I have no memory of any of it except for a vague recollection of uttering “ow” at one point; the doctor confirmed today that I did say that when she was rounding a difficult curve. I asked if I said anything under sedation that I should be embarrassed about. She claims I didn’t. But I'm sure she’s lying. She seemed mad at me today.

Besides giving me something cringe-worthy to write about, my friend Molly shared that this procedure helped give her some needed perspective. As she and her husband struggled with some house-buying woes, she pointed out to him that their problems could be worse: "Hey, think about Dale. Somebody knocked her out and stuck a tube with a camera on it up her butt today!" You’re welcome. I’m always here to help.

As was confirmed with my small bowel last week, my colon is also a fine looking organ…or whatever kind of body part it is. The tissue samples came back negative, which brings us to a total of four terrible procedures and one not-so-terrible procedure that have all produced normal results. I’m still waiting for results on the 648 vials of blood they took on Tuesday night and a sample of my…uh…output on which they’re checking sodium and potassium levels, which apparently can tell them something about my condition. Since the blood test results won’t be known for a week, the G.I. doc decided today to try some treatments in the meantiime. Seems kinda like throwing darts at…well, at ME!

She’s put me on antibiotics thinking that in case this is an infection, we’ll try to fight it. She also had me start taking pancreatic enzyme replacement pills in case the problem is that I have pancreatic misabsorption (when the pancreas doesn’t take in enough “juice” and don't digest fat) The advantage of these pills is that they work immediately. The disadvantage is that I’d need to take them before every single meal and snack for the rest of my life. I did the math. This amounts to 6,935 pills a year.

At med time (just like bed time, but more fun) I also received a surprise pill, one similar to the little purple pill you see advertised, to control acid.

Stating that I need to figure out how to deal with this problem without hospitalization, the doctor took me off IV fluids and said -- assuming that the enzyme pills actually work -- I could eat anything I want. I immediately called up Marna and shouted “Bring on the pizza!” And my friend Kristi brought on a variety of exceptionally rich brownies. I gobbled up my enzymes and dug into the deep dish pepperoni. If tonight’s test run (pardon the expression) is any indication, my five trips to the bathroom in 2½ hours probably mean there are 7,000 fewer pills in my future.

So I continue to kill time in the hospital, but I’m off IV fluids which is quite liberating. When I’m not running to the bathroom, I’m leaping around shouting “I’m free! I’m free!” The G.I. doc said that her hope is to get me home for the weekend, but I have no idea what the next item on her idea list is. (I consistently annoy her with this question and she consistently evades it.) But I feel like she thinks that I should stop taking up hospital space with this problem. Despite the fact that I’m a pretty upbeat hospital patient (only due to the good fortune of having my own room), I hope she’s aware that my presence here is not MY idea. Not that this hasn’t been a fun week: I truly enjoy hanging out in the oncology ward surrounded by really sick people and their low-spirited families, being ignored by nurses, getting served wrong meals and having to wait two hours for the right ones, listening to other patients vomit, rolling a skinny metal friend everywhere I go who inevitably starts beeping as soon as I’m a mile away from my room, and being flashed by old ladies. And I haven’t told you about the distasteful stuff.

On the plus side, having my own room is the plus-iest. I can’t imagine enduring this experience while sharing space with a roommate and her visitors. I’m also surrounded by balloons, plant-life and some entertaining visitors. And today a cute young intern visited my room. Okay, he was a MUSIC THERAPY intern. But he sat down with his guitar and serenaded me for about 20 minutes. I strongly believe in the healing powers of music. One of the songs he played for me was “Feeling Groovy.” I’m just sitting back and waiting for “groovy” to hit.

Tuesday, April 16, 2002 at 11:07 PM (CDT)

Have you missed me? I’ve been holding off on posting any updates in hopes of having an “end” to my recent saga. Unfortunately my latest adventure isn’t ending in a timely manner, forcing me to share the details of my mystery malady instead of telling you about my recent bout with something with a really cool, serious-sounding name like “symbionosic ulcernocial rectalitis.”

The story began, so I thought, on March 17 with what I’ve assumed was half of a bad turkey club sandwich (and feasting on the other half on March 19) and today has me in the hospital. Almost every day since March 20 has included a whole lotta stomach cramps, ugly emanating of body fluids from more than one oriface, the inability to “keep” anything I consumed, as well as a week filled with torturous tests only a gastrointestinal freak would love. (All of which came out negative for anything.) Tomorrow holds the promise of a colonoscopy and possibly a catheter. Only those of you who are really into medical details and aren’t easily disgusted will want to hear the reason for the catheter.

I’ve been getting IV fluids on an outpatient basis for several days and the G.I. department has been unable to squeeze me in, despite doctor to doctor pleas. With no improvement in my condition, a continuing need for fluids, a 10-pound weight loss so far (a plus, in my book) and the guarantee of getting a G.I. doc to see me, I was put in the hospital Tuesday afternoon.

I was led to believe I wouldn’t see the G.I. doc until Wednesday morning, but happily she showed up late Tuesday afternoon. I don’t know why I was so happy to see her because, if you think about it, there is no test that a G.I. doctor recommends that is pleasant. Thus Wednesday’s colonoscopy. Here are a few of things I’ve learned so far:
- Based on the original bout, my five-day “feel good” period, and relapse, this probably isn’t food poisoning.
- According to the G.I. doc it could be one of a 100 things. (I didn’t ask if last week’s testing hell at least dropped the possibilities down to 95.)
- The fact that my oncologist has passed this on to a G.I. is probably good news.
- The fact that the G.I. doc is concocting new ways to torture me isn’t.

As is always the case with my hospital stays, no one will give me an estimated time of departure. I suppose they can't since we don’t yet have an estimated date of cure. Tonight they took enough vials of blood from me to transfuse the entire hospital. These vials are now on there way to one of America’s top testing facilities to confirm the presence of an extremely rare but highly and quickly curable disorder that will turn medical science on its ear.

This ailment has a number of negatives: 120 trips a day to the bathroom, painful diet restrictions (no dairy products for the last three weeks and currently clear liquids only), not to mention that hospital thing, but the worst part is starvation. When I’m not dealing with stomach cramps and nausea, I am unbelievably hungry. This isn’t surprising since no food has stayed in me for weeks. And I've learned the hard way that the after-effects of succumbing to my cravings are definitely not worth it. To say I am eager for a cure is the world’s biggest understatement. I actually tear up at Domino’s commercials.

Time to rest up for the big procedure tomorrow morning. I had a flexible sigmoidoscopy last week which was the most painful procedure I’ve endured in a long time. No doubt the colonoscopy will be TWICE as fun. At least this test includes sedatives. Drugs. Gotta love ‘em.

Wednesday, April 10, 2002 at 12:44 AM (CDT)

Tales of exciting new adventures coming soon: News will include the following: A three week (so far) bout of food poisoning or an as yet mystery malady...severe pain...vomiting, and more...CT scans...disgusting tests...enemas...x-rays...IV fluid perils...no real food for weeks...my new weight loss program...and that's not all! Watch for an update next week.

Sunday, March 03, 2002 at 11:21 PM (CST)

Some mysteries that have arisen over the past couple of weeks:
How did I get to be in my 40s without ever having learned how to make Jello?
How does someone with so little hair get a clogged shower drain?
Is it legal for someone else to play MY cancer card?
--------------------------------------------
Once my eye healed, I’ve had a pretty good "up" period ("up" defined: the days after my "chemo coma" and before my next treatment). For a change, I’ve felt pretty darn productive. I think I’ve been saving up two years worth of energy just for these last two weeks. Here are some of my amazing feats:

- One entire weekend was devoted to cleaning files and reorganizing my home office. (After I spent half a weekend hand-shredding 10 years worth of financial documents, I went out and purchased a shredder. Wouldn’t want to take a chance that some identity thief might get their hands on my Enron stock.)

- I was brought into a "top secret" project at work (I’d tell you about it, but I’d have to kill you).

- My turtle-paced CD made headway; I recorded a song in a very cool studio in N.E. Minneapolis. As happens to me many places these days, the recording studio owner and I had a "cancer bonding" moment. (I always get a laugh when someone says to me "I hope you don’t mind talking about it." "Yeah, it’s difficult being this shy and private. Thanks for pulling me out of my shell.") At the end of the session, he wouldn’t let me pay him. Another item to add to that list of cancer perks.

- I’m in the midst of developing a shrewd moneymaking venture (stand by…it’s YOUR money I’m planning to make).

- I’ve also been quite the Betty Crockwolf (Wolfy Crocker? Pillsbury Doughwolf?) too; I spent one day preparing a very fussy cheesecake for a potluck. Steps included crushing vanilla wafers, toasting pecans, melting chocolate, unwrapping 50 individually wrapped caramels, plus the usual cheesecakey stuff, and for the piece de resistance, carefully garnishing with whipped cream and finely chopping pecans. When I arrived at the potluck, my hostess promptly dropped it upside down on the floor.

This past weekend’s chemo hibernation has been tolerable. The fact that I stay in bed for over 13 straight hours straight two nights in a row doesn’t hurt. The move to the couch is rather strenuous, but I try to sneak in a nap to help in the recovery process. I’ve discovered a new food that makes my taste buds smile…new Yoplait Whipped Light & Fluffy yogurt.

Things are so status quo, the biggest complaint I could throw at my doctor last week is thick, dry, cracking fingertips. I have bigger complaints -- that wet eyebrow thing and painful jaw cramps for two -- but the fingertips are the only thing I could come up with that he might show interest in. And he did. They’re so dry and thick I have trouble gripping things. Just about everything slips out of my hands these days, so don’t ask me to care for your Waterford Crystal or pour your 100-year-old Scotch. In fact, babysitting for my friend Mary’s daughter last Friday could have been a mistake, but so far I haven’t dropped any small children. I do get impatient when trying to pick up small items or grasp pieces of paper, and I end up swearing a lot.

The doctor’s concern is that my fingers would get to a point where I can’t button my clothes and perform everyday tasks. If this got to be the case, it could mean a change of chemotherapy, which we don’t really want since this one has been working so nicely for 20 months. So at bedtime I’m busily applying gunky lotion to my fingers and donning gloves. So far there’s no change to the fingers, the oogy gloppy gloves disgust me, but at least I can still dress myself. And perhaps if I'm feeling as productive the next couple of weeks as I have the last, I can start purchasing large quantities of Velcro and sewing it into all my clothes.

Wednesday February 6, 2002 1:53 AM CST

Hello there!
It’s finally happened. A medical adventure that I found very little humor in. A couple of friend’s reaction to my injury made me realize that they automatically categorized this as "another one Dale’s funny traumas." For a change, this was not the case. Yes, I have laughed at pain before and yes, I have laughed when things happen to unusual or embarrassing parts of my body, but this time the body part wasn’t funny enough to make the pain worthwhile.

It was day #2, Saturday, of my highly anticipated trip to Las Vegas to meet Laurie, Helen and Dick (college cohorts) and Fred, Mark and Bryan (people who didn’t go to Drake but managed to turn out okay anyway).

Chemo has left me dealing with extremely dry eyes. (Yes, I know I said that my eyes water all the time, but this isn’t a contradiction; my eyes are still very dry.) Taking my contacts out has been a challenge for several months. On Saturday morning I was trying to remove my contact, and it twisted sideways in my eye and sliced into my cornea. (The medical industry calls this a "corneal abrasion" but that doesn’t have a painful enough connotation.) At first I thought this was the kind of eye cut I typically get, where it is agonizing as it happens, but after a day of not wearing contacts it’s fine. Not this time. As time went by, my eye turned completely red, the lid swelled and eventually I couldn't go longer than 1/8th of a second without thinking about how much pain I was in.

The eye hurt quite a bit on Saturday, but I kept expecting it to get better. After whiling away Sunday afternoon in a keno lounge with Laurie (and winning 80 cents), I went up to the room I was sharing with Helen. No longer distracted by the exciting, fast-paced whirl of keno, my eye pain seemed to worsen. Helen, tired of listening to me moan, groan and writhe on the bed in pain, insisted I seek medical attention. She called Dick who absconded with Bryan’s car (unbeknownst to Bryan) and he and Helen chauffeured me to a 24-hour clinic. Any worries we might have had about the neighborhood or the quality of people we’d meet there were alleviated by the "No guns allowed" sign on the door.

When we learned there would be an hour wait, I filled out the paperwork, left them my credit card, and we left for our dinner reservation at Emeril’s (some things are more important than intolerable pain). I sat through dinner wallowing in my misery, trying to keep my whining volume low enough that it wouldn’t interrupt the gaiety of the festivities, yet I could still be heard. I must’ve been louder than I thought, and most likely looked incredibly pitiful, because Bryan sacrificed his main course and he and Helen took me back to the clinic. Our "come back after dinner" plan worked well. After I made sure that the people we were sitting near in the waiting room didn’t have anything contagious (yes, I really asked them), I was called in within a minute of our arrival. The doctor examined the eye, sprayed eyewash all over me (I think some even ended up in my eye), put in some awesome numbing drops (definitely hit the eye that time, but only did the trick for a couple of hours) and gave me antibiotic eye drops.

Vik and her assistant, Judy, were also in Vegas for a photography seminar; I had invited them to join us for dinner Sunday night. Dick’s comment to me Monday morning: "Gee Dale, it was nice of you to invite your friends to dinner, AND THEN DUMP THEM!"

I returned to Minneapolis on Tues., Jan. 22, keeping my eyes shut for the entire flight home. (This was nothing like my inbound trip where I became best friends with Jules across the aisle when we discovered our cancer bond. We spent most of the trip chattering away and harassing the flight attendant.)

I have since been to the eye doctor four times. (After this Monday’s appointment he finally didn't ask me to come back.) For a week I had to put antibiotic drops in my eye every HOUR. It’s amazing how fast an hour passes. It’s also amazing how hard it is to keep track of a teeny little bottle of eye drops that you have to use every hour. At the eye doctor’s recommendation, I delayed last week's chemo a week until this week (Wednesday) because of the risk for infection.

The past two and half weeks have been mostly pain, blurriness, and light sensitivity. Finally, these last few days -- except for the light sensitivity and some night vision issues -- I’ve felt practically normal. (Which is much better than before.) You can still see a white spot on my eyeball where the injury is.

My $154 clinic bill will be partially reimbursed (out-of-network) by my insurance company. On the positive side, even if they’d refused the whole thing, I’d still be ahead because I was too miserable to gamble away as much as I planned. During the two hours I did spend at the Caribbean stud poker table -- my favorite game -- despite my best efforts to GET RID OF $100, I ended up $80 ahead.

On the other hand my $121 ticket to see "O" (with Judy and Bryan) was a waste. Trying to watch the show was intensely uncomfortable, and during the part that included fire, I had to cover my eyes. I spent the entire time looking at my watch (with my left eye) and waiting for it to end. Was I fun to be with, or what?

From Jan. 25 through Feb. 2, I moved to the suburbs to house/pet sit for my friends Vik and Dan. (Two dogs, two cats, two fish tanks). My first order of business in their very bright, window-full house was to shut all the blinds. Walking their dogs in the sunny, snow-white outdoors was a challenge. I squinted to the point of almost completely shutting my eyes, and with tears streaming down my face, I let the dogs drag me blindly around the neighborhood.

Definitely one of the most excrutiatingly painful traumas I've experienced in awhile. And very disappointing to have my "I don't get out much" get-away/reunion ruined. I don’t think I made it such a great time for the gang I met either. Here’s my public apology to Laurie, Helen, Dick, Mark, Fred and Bryan for my insertion of pain into what should have been a 100 percent fun trip! I know I said the trip was supposed to all about me, but this honestly was not what I had in mind! Thanks for your patience, tolerance, time, and all the other nice things you did for me (including the clinic trips, shuttles to and from the airport, the take-out banana cream pie, the entertaining ride with seven of us in an Aurora that was so uncomfortable it made me forget my eye, the picked-up meal tabs, the cool Hard Rock Café hat, cookies, Tupperware, and any stuff I’m forgetting) and for not making fun of me to my face! I definitely need a "do over" on this trip. Which will be impossible because I’m never leaving town ever again.

It’s obvious that my pain has overwhelmed everything so much these last couple weeks that I couldn’t see the positive side of anything until this past Saturday when I actually got misty-eyed at the free CinnaStix and refrigerator magnet Dominos delivered with my pizza.

But the CinnaStix were pretty tasty.

Dale

Sunday January 27, 2002 10:44 PM CST

This is a Mon., Jan. 28 update to the Sunday, Jan. 27 NONupdate. Coming soon: The tale of the injured eyeball. Agony in Las Vegas. Currently petsitting with my one eye in Plymouth for six more days. More adventures sure to occur. Oh, here's a new one now: Chemo CANCELLED this Wednesday due to possibility of eye infection. Bonus free weekend! Detailed update when both corneas are operational.

Monday, December 03, 2001 at 11:11 PM (CST)

Okay everyone, let’s start lowering our expectations…if you didn’t do that long ago. It’s the holiday season. You know what that means. It’s time for me to whine, complain, moan, groan, and kvetch about having to write this year’s edition of "the ME tiMEs." Unlike last year at this time, I actually have some ideas. No motivation to actually work on it, but ideas…lots of ideas. First, there’s the front page story about how I won a coupon for a jar of pickles at the state fair last summer. This story may have been nudged off the front page however when my dad forgot I was parked in his driveway last weekend and smashed into my car when he left for work. I’m also considering an instructional step-by-step guide to drawing on eyebrows. I’m even thinking about adding my own illustrations this year. Wow, it’s EXHAUSTING just thinking of all the thinking I have to do. So, I’m sure you’ll understand why this update is brief, and subsequent updates may not be forthcoming for awhile. Complaining, moaning, groaning, and kvetching time is running out.

Actually this isn’t much of an update at all is it? Well, I’ll fix that. Last week's scans showed the usual happy results: "Stable." Last week’s chemo brought about its usual dozing in my usual couchal position. Happily, I was hooked up to a 30-day free trial of digital cable and the weekend involved more channel surfing than I ever dreamed of. Being hooked up to digital cable is much preferable to being hooked up to IV chemo drugs, though I get a bit bruised when I change channels.

Speaking of "the ME tiMEs" (which, if memory serves me, we were a couple paragraphs ago), if you’ve never been a subscriber and would like to receive this important, intellectual, philosophical, and always-enlightening annual publication, email me your address so you can receive your very own copy. (Shockingly, subscriptions remain free.) "the ME tiMEs" is not, and will most likely never be, an electronic publication. It is only available in print, through the U.S. mail. I’m optimistic that its ebay value will someday equal that of a Precious Moments figurine, which currently sells for approximately 99 cents.

Look for more exciting…er, look for exciting…uh…look for CaringBridge.com entries in 2002!
Dale

Sunday, November 11, 2001 at 04:06 PM (CST)

Serious chemo doldrums. Treatment last Wednesday. Very tired. Going to update in brief (?), non-connecting snippets.

Small amount of existing hair has turned brittle and over past week has been falling out at a dramatic rate. It looks like I'll be back to hats. Ugh. Hopefully only briefly.

Started a six-week humor writing class at The Loft. Not feeling very humorous, but the class is keeping ME entertained.

Survived Breast Cancer Awareness month. I spend most of the month being annoyed by so-called breast cancer spokespeople that don't know how to pronounce "mastectomy." I think that should be a minimum qualification in order to represent the disease.

The cancer specialist treating George Harrison in Staten Island used to be my Sunday school teacher. I hope George's cancer treatment turns out better than my religious education.

Through my last two chemo recoveries I've watched the tapes of the first season of Sex in the City. Don't get what the fuss is all about. I couldn't tell when one episode ended and the next started. On the bright side, dozing on and off between them made no difference.

Spent a good amount of time between my last two treatments being sick. Fever, sore throat, cough, flu-like stuff. I've had laryngitis for three weeks now. And I'm too tired to think up anything amusing to say about losing my voice, to ward off your obvious insults. Seems minor compared to my latest hair traumas anyway.

Normally I write these entries in MS Word and then cut and paste them into the journal posting area of this Web site, but today I'm typing directly into the Journal Message page. I'm not sure what this signifies, but maybe it will serve as an excuse for those of you with higher expectations from my journal postings. Ya know, sometimes and update is just an update. They can't all be works of art.

Next bone and CT scan, Mon., Nov. 26. Next treatment, Wed., Nov. 28. The fun goes on, and on, and on, and on...

Monday, October 01, 2001 at 12:12 AM (CDT)

Yes, it HAS been awhile — 45 days — since my last update. I’ve been a bit put off at Osama bin Laden and Rudolph Giuliani for taking the focus off of ME! Yeesh…talk about self-centered.

Like most of you, I’ve spent a good number of the days since September 11 glued to my TV set. Unlike the late-night comedians, I am not going to sit here and tell you how at a loss I am for what to do with this Web site, that there’s no precedent for this, how I’m not really sure how to handle this, how I’ll have to slowly work my way back into humor, yadah, yadah, yadah. I was really annoyed with those guys. Either get on the air and be funny or go away. I’m not looking for political commentary or words of wisdom and comfort from Jay Leno. That’s what Oprah is for.

Since last I posted I have a couple more chemo treatments tucked under my belt. My last CT scan showed the usual result: "Stable." I’m sure there are a number of relatives on the edge of their chairs waiting to hear what I have to say about them and my trip to Milwaukee over Labor Day weekend. Well, here’s what I have to say to them: Don’t get too close to the edges of those chairs, or you’ll fall off! Okay, okay…one story: At their anniversary dinner I sang a song to my parents that included mention of several childhood pets; one line described how dad got rid of my guppies by putting them down the garbage disposal. After I finished singing, I was approached by my cousin’s wide-eyed young son who asked, "Did your dad really put the guppies down the garbage disposal?" Obviously I’m not accustomed to performing my "R" rated act in front of a "G" rated audience. Hopefully my attempt to back-pedal (i.e. lie) my way out of this situation was successful and the kid won’t be traumatized for life. I told him that dad didn’t really turn on the disposal, I just put that in to make the story funnier. So now, not only does he feel much better, he also received a valuable lesson in comedy writing.

Last weekend I went "up north" (which means "northern Minnesota" for those of you who don't speak Minnesotan) with my friend Diane where we spent a relaxing, wonderful long weekend at her in-law’s cabin on a lake near Grand Rapids. Now you’re going to ask me the name of the lake, aren’t you? It starts with a "W." The weekend’s adventure for me was driving a boat for the first time in my life. Diane was much braver than I was about this feat. She kept telling me "Faster! Faster!" and, despite the fact that we were a mile from shore and any other humans, I couldn’t help but picture us on the 10:00 news:"No bodies have been recovered, but authorities have found remnants of a bottle of Merlot and some brie." (Which I guess sounds better than "…cans of Miller Lite and some Cheez Nips.") Most of the weekend was rainy, which suited me fine. I always welcome a legitimate excuse to not be active. Before we left I took a couple of bounces on the trampoline, which left me winded for 30 minutes.

My latest chemo treatment was last Wednesday. These last couple of treatments has fatigue hitting me sooner than usual. It used to be fairly predictable that when I have treatments on Wednesday, the "dozing" effects don’t hit until Friday, making Thursdays after chemo fair game for activities. This doesn’t seem to be the case any longer. This was first noticed in early September when I actually got tired on Thursday evening, the day after chemo...definitely a sign that things were amiss. On normal days I don’t get tired at night. At all. Ever. I’m pretty sure that I could stay up all night and never get sleepy. (Thus these midnight postings.) I say "pretty sure" because I have these wonderful little blue pills that prevent me from actually having to test this theory. Mornings are another story. In the morning I could stay in bed all day and never wake up. This is a theory that I have actually tested. But I digress…where was I?…Oh yeah, I was telling you about my ever-widening days of chemo fatigue. This last week’s treatment whomped me early Thursday. A full day earlier than I expected. Fortunately I was well-stocked with Erev Yom Kippur leftovers, plus a Jucy Lucy (hamburger with hot, molten cheese on the INSIDE, and yes, that’s the correct spelling) delivery from Marna, so my Thursday through Sunday hibernation was somewhat bearable (HA! Unintended pun!) I crawled out of my cave to a baby shower for my friend Annette today (where I left with fabulous parting gifts because I always have to win the games), made a feeble attempt at shopping, then came home and climbed back into the couch. I emerged to check email, saw Bridget’s guest book entry begging for an update, and knew that I just couldn’t disappoint e-ME tiMEs fans (uh...fan) any longer.

Unfortunately, in the midst of — and coming out of — the chemo doldrums, I have no memory for what my life consisted of before I went into seclusion. I watched the movie "Memento" this weekend. It’s about a guy who has a condition that prevents him from remembering ANYTHING, and I could totally relate to him. So rather than preparing myself for an onslaught of "Why didn’t you write about…" and "You forgot to write about…" just remember that, like the guy in the movie, I have a condition. It’s called "chemo brain," it’s medically recognized (I have an article about it that I carry with me as proof), so be nice. It’s not nice to pick on people with disabilities.

Thursday, August 16 2001 at 10:59 PM (CDT)

Here’s something I’ll bet you didn’t know about me: I’m a "tool girl" at heart. This revelation occurred to me as I recently sat happily amidst 200 pieces of fake wood that I turned into a filing cabinet. It was confirmed a few days later when I found myself with a Millermatic 250X mig welder in my hands. (I’m sure you welders out there know this is a top of the line welder…engineered for performance.) Yes, I am a welding maniac. Mask on, sparks flying, look out [insert name of famous welder here]. My night ‘o welding came courtesy of Jeff and Jolene whose massive "garage that Jeff built" takes up most of St. Paul. Among the many features of this garage is a commercial-sized car lift. I can’t wait to visit them again and examine the underside of my car. In the meantime, feel free to contact me for any of your welding needs.

My chemo-coma days are off by one and it’s confusing me. Usually I have chemo on Wednesdays, then nap through Friday, Saturday, Sunday and pop back up like a shooting gallery duck by Monday. Last week I had chemo on Thursday, but still expected to pop back up on Monday; I went about my normal Monday activities, but my body wasn’t cooperating. Thoroughly, totally, utterly exhausted, I spent most of the day in a foggy walking coma. (Much like walking pneumonia with more fog and less bloody sputum.)

To ensure that I feel good for a family trip to Milwaukee over Labor Day weekend, I’m delaying my next treatment until after Labor Day, and as a result get a bonus "feel good" week. My next CT scan is Tuesday, September 4. I should get the results at a doctor’s appointment late that same day, followed by chemo on Wednesday, September 5. (Okay, everyone who tries to keep track of my schedule, read that last sentence again a few more times. You’d think that posting these dates in blue and white on the Web would be helpful, but I’ve lost count of the number of times that I hear, "Oh, I thought your chemo was [insert wrong day here]!)

The mention of the trip to Milwaukee necessitates a mention of some of those relatives that have been waiting for their big mention on this Web site. My cousin, and ever-faithful reader, JULIE will be coming from Portland, OR with her offspring. I’ll also see my cousins (and Julie’s siblings) NANCY and MICHAEL, and their young ‘uns, and their mother LILA, none of whom have ever expressed an interest in seeing their names here, so I hope this gets me extra credit. To make myself more popular (if that’s even possible) I could mention that I’m also looking forward to seeing Lila’s husband WARREN and Nancy’s husband PHIL, but that would force me to admit that I can’t remember Michael’s wife’s name, and I certainly wouldn’t want to use this space to make myself appear foolish, so I’m going to skip that part. I'm driving to Milwaukee with my sister MARNA; my sister CARYN and MY PARENTS will be there as well…there’s some occasion we’re supposed to celebrate…hmmm… what oh what oh could it be…thinking….thinking…oh, yeah…September 1 is my parents’ 55th wedding anniversary and for some reason people seem to think we’re supposed to celebrate. Personally, I don’t feel their life together really began until I came along; the first 14 years they were just meaninglessly drifting along in a sea of gloom, especially after Marna and Caryn were born. But thankfully they’ve had 41 good years.

Since last I posted my life has been consumed by the following: Work, chemo, work, napping, work, a James Taylor concert (that I pulled myself off my chemo-couch to attend), more napping, two Jucy Lucy’s, work, a funeral, work, an Aredia treatment, work, and a lot of bad movies on Lifetime.

Yes, I’ve managed to squeeze massive amounts of work in between chemo and napping. There’s a group of people in California for whom I just started working on a really big ongoing project that I don’t think know about my regularly scheduled chemo treatments. I was hoping to keep it a secret until I made it through my first quarter with them, but the project manager showed up in Minneapolis one day and I was forced to meet him face-to-face; he’s a fairly intuitive fellow and my hair-do may have tipped him off. I intend to bring it out in the open eventually, but for now I’m just going to let them wonder about my periodic mysterious disappearances. Might they think I’m an international spy who has to jet off to ports unknown at a moment’s notice? Or a compulsive gambler who has to take off for casinos when the uncontrollable urge hits? Or a trollop sneaking off for a secret affair? Truthfully, it’s unlikely they’re even aware of my mysterious disappearances which in reality have me tiptoeing -— actually, clomping -— off to the clinic to be plied with steroids, Benadryl, and various IV chemicals. Ah, what a romantic life I lead.

Sunday, July 22, 2001 at 09:51 PM (CDT)

And now, the latest on the search for Chandra Levy. She’s not here.

My last chemo was Wednesday. (And my next treatment is Thur., August 9 for those of you charting my course.) I’ve been in varying stages of subconciousness since Friday. I’ve become so good at dozing on my couch for three days in a row that I think I’m ready to compete at championship level. Saturday night some friends came over to get front-row seats for the Aquatennial fireworks display, where my balcony offers a spectacular view. I entertained to the extent that I cleared off my table to make room for the food I told the guests to bring.

I was going to write this entry yesterday, but I wasn’t sure you’d understand the significance of the only thing I could think to write: blghkdihngihaefkhdsafiaodshdzzzzzzzzzzzzzzzzzzzzzzzzzz. Several times throughout this chemotherapy affair, my friend Vik’s mom raids a local deli and sends over enough food to feed the cast of "Fiddler on the Roof." Yesterday Vik made a deli-dropoff on behalf of her mom and explained to me that her mother often has a problem relating the timing of when Vik takes me to chemo to the days I don’t feel well, and thinks about sending food after my "chemo low" days have passed. This time she asked Vik, "Is Dale still sick from chemo?" When Vik replied in the affirmative, her mother happily responded "Good!"

The other night on the elevator in my condo a woman suddenly reached over and affectionately rubbed my arm. My memory isn’t the greatest these days, but I was fairly sure that I’d never seen her before in my life. She then said to me, "How ARE you?" and added, "I used to have hair that looked just like yours!" And I’d convinced myself that others viewed my short, thin "do" as a stylish choice. That’s the thing about denial… someone always comes along and ruins it.

Your guest book entries, which continue to entertain, merit some comments and responses. I figure I might as well do it here. Like Elaine so eloquently noted in an early guest book posting, it takes SO much energy clicking on all those names in the address book. Besides, personal responses would take away the possibility of humiliating you publicly.

I questioned Vik, who’s only recently discovered the joys and dangers of the WWW, on her propensity to write without capital letters. She claims that she was e.e. cummings in a previous life.

To my mom and her able assistant Mary Beth: I believe that the guest book entry form asks for COUNTRY, not COUNTY.

Bev: If you get any real estate clients out of this, I demand a commission.

Laurie and Trudy: While I’m sure that being the 777th visitor to a Web site might have significance to many people, seven is not a particularly meaningful number for me. I do have a fondness for the number 11 however, and plan to award a prize to the 111,111 visitor to this site.

Stephanie: Colgate Tartar Control Plus Whitening. Thank you for your interest.

Karen: Unfortunately I can only correct typos in current journal entries, not entries that are in "journal history." So the previous typo is there for posterity for all to enjoy and snicker at. (Or is that "for all at which to enjoy and snicker"?)

Also, a few loose ends to clear up…
There seem to be a lot of parents like mine out there. I’m not sure what to make of this, but I’m pretty sure an electronic support group won’t help them. Perhaps a convention in Branson, Missouri.

Paul: Still waiting for word from your new state. I thought you were moving one state over. I must’ve been wrong. How are things in Alaska?

Ann and Bill: Don’t you still owe me a drink? (SOME things I remember clearly!)

Bridget H.: Re: "…I didn’t understand the guest book thing so I’ve just been reading along with no comment." If I recall, you said the exact same thing about email not that long ago.

Larry O.: (A co-worker from 18 years ago magically surfaces in my guest book!) The weather HAS stayed in the 90s. I assume you’ve tried my Diet Coke cool-off trick and can recommend it to others. And I love the term "homegirl." Makes me sound pretty hip. Goes with my hair style.

Sandy B.: Re: A clothespin for the nose. I have one word for that idea: Ouch.

Mary S.: Thanks for helping my dad. Shockingly, my mother, Lois "I can’t ask" Wolf, actually posted a guest book entry before he did. But we both know why. Dad is still trying to figure out how this Internet thing works, and won’t do anything until he understands it. Tell him that if I had to understand everything before I used it, I’d still be sitting in front of my Playdough Fun Factory scratching my head.

One of my condo neighbors, Alice, mentioned throwing her computer off her balcony. Before I condone such behavior, I should probably ask: Alice, what side of the building do you live on?

And lastly, I’d like to apologize to all Iowans who may have been offended by guestbook remarks written by Sandy Christen regarding not finding Iowa to be a fun place to vacation. The opinions expressed in this guest book do not necessarily represent the opinions of management. Though, in this case, she wasn’t that far off.

I had posted this journal entry and signed off, but something was gnawing at me. What was it that I forgot? What, oh what? And then it occurred it me! I hadn't remarked on the witty comments made by my sister Marna or my cousin Julie. I know, I know, I didn't mention many of your witty comments. But Marna and Julie are more likely to yell at me for it later. Marna and Julie: Witty, insightful, intelligent...did I mention witty? Whew. I'm hope I'm off the hook now. (Somehow I have a feeling I'm still going to get yelled at for something.)

You may have noticed that this site also allows me to post Web links, so I’ve added a couple of my favorites. At Snood.com you can download the most addictive game ever invented. This will be dangerous for any of you susceptible to being overpowered by computer games. Once you download, I guarantee that hours and hours of your valuable time will soon be lost. The other site I’ve provided a link to is "Urban Legends & Folklore." This is where you should go before you forward another email that says "forward to everyone in your address book." It debunks almost every email that anyone has ever forwarded. Except for the one about the 200-pound cat that ate a man who got even with his bride at his wedding by spreading a computer virus that destroyed all the files on your computer, got you free clothes at the Gap, a free meal at Outback Steakhouse, and resulted in antiperspirant causing breast cancer. That one I’m pretty sure is true.

Tuesday, July 10, 2001 at 12:02 AM (CDT)

Oh the pressure. People actually checking this site in search of updates. What’s a girl with no news to do? I suppose what I usually do…write stuff anyway. Would you like to hear the highlights of my life since last I posted? If your answer is "no" then now is the time to head over to ebay and bid on the tablecloth I’m selling. If your answer is "yes," fasten your seatbelts...or you might fall out of your chair as you drift off to sleep.

Here’s what I’ve done since last I posted:
- I’ve seen two movies: A. I., Artificial Intelligence (thumbs down) and Moulin Rouge (thumbs sideways).
- I went to the office three -- count them -- THREE times. I work from home most of the time; showing my face in the office too often could set a dangerous precedent. Someone might realize that I still work there and actually start giving me work to do.
- I spent Thursday afternoon in a recording studio where I taped a song for Ceridian’s customer conference, INSIGHTS. This is probably the most fun I could imagine having in any activity that doesn’t involve ice cream or cheese.
- During a bi-weekly phone call with mom (and my once every six months phone conversation with my phone-a-phobic dad), I told them I wanted to give them this Web site address. My parents don’t have a computer, but I guessed that they both worked with people who could access this site for them. My dad got on the phone and the conversation went something like this:
ME: Hey dad, does anyone in your office have Internet access?
DAD: No.
ME: Are you sure?
DAD: No.
After more probing questions I discerned that his office most likely IS Internet connected. 10 minutes later I moved on to trying to give him the address.
ME: Okay, write this down…
DAD: I’m going to repeat this to your mother and she’s going to write it down.
[This should be fun.]
ME: Ready?
DAD: Ready Lois?
MOM (in background): Just a minute I’m looking for something to write with…
DAD: Okay, we’re ready
ME: w-w-w dot…
DAD: Lois, write this down…w-w-w-dot…no, don’t write "dot," make a dot…
After 15 agonizing minutes, they got the address written down…and then I realized I forgot the ".com" after "caringbridge." I considered giving this up and engaging in a less painful activity…like dropping an anvil on my own head, but took a deep breath and spent another 10 minutes explaining the correction to them. Then my mom, who has no understanding of the Internet whatsoever, got back on the phone.
ME: So mom, take that Internet address to work and ask someone to show you my Web site.
MOM: Oh, I can’t do that.
ME: Why?
MOM: I just can’t ask them to do that.
ME: Mom, they won’t care. This isn’t a big deal.
MOM: Oh no, I can't ask anyone this.
ME: Mom, you show everyone my newsletters. This isn’t any different.
MOM: No, no, I'm not going to ask.
So Waterloo Community Playhouse ticket-holders can rest easy knowing that employees are not wasting time perusing the E-ME tiMEs, but are attending fully to theatre business…or Internet porn…or shopping for tablecloths on ebay.

Readers of my guest book will see that my dad succeeded in finding someone to open this site at the office. And she seems to have a clear understanding of who she's working with. She prints out everything on the site and my dad takes the printed pages home to my mom who now thinks the Internet is a fancy combination of a typewriter and mimeograph machine.

With this site almost a month old, I was surprised to find a typo in the subhead above. I’m usually gleeful about finding other people’s typographical errors, and in return others get great satisfaction out of finding mine. I can’t believe that the above read "...lazily designed my me..." until yesterday without anyone noticing. And don’t tell me you saw it but were too kind to point it out. I would never do that and neither would you.

Those of you who are checking this site for the first time since I last sent you an email notifying you of a posting are behind; I lied about that notification thing. Those of you NOT checking this Web site because you haven't received notification of a posting are two postings behind...but you probably don't really care since you aren't reading this anyway.

Today I was in the office and went down to the vending machines. I bought a can of Diet Coke and as I walked to the elevator I dropped it. When it hit the floor, evidently it made a tiny hole in the can and as I leaned forward to pick it up, it sprayed me and I got a face full of Diet Coke. Fortunately since it’s 95 degrees and disgustingly humid outside, I found it quite cool and refreshing.

Sunday, July 01, 2001 at 10:46 PM (CDT)

Shhhhhh. Don’t tell anyone. This posting is just for you. Yes, you…one who is curious, bored, or drunk enough to check this site for updates without prompting/noodging/nagging/harassing. Wouldn’t it be nice if your efforts could be rewarded with some interesting tidbit? I suppose you’ve already heard about the breakup of Julia Roberts and Benjamin Bratt. But I’ll bet you’re clueless about my aversion to the smell of alcohol prep pads and toothpaste.

Beginning the day after each chemo treatment I give myself Neupogen shots for 10 days. Neupogen is a growth factor stimulating hormone that increases white blood cell count. Three alcohol wipes are involved in the injection procedure: One for cleaning the surface I lay my supplies on, one for cleaning the top of the medicine vial, and one for cleaning the area of skin where I insert the needle. My habit is to give myself the shot right before brushing my teeth. (Except for the time I got confused and ended up with a toothbrush stuck in my thigh…but that’s another story....) For the first few injection days, when I am at my most "chemo blechy" the aroma of alcohol mixed with toothpaste is almost more than I can stand. Though this isn’t a mixture that one comes nose to nose with on a regular basis, I unfortunately encounter it for 10 out of every 21 days. This story is dual-purpose: One, it filled up an impressive amount of space and two, it attempted to extort a teeny bit of compassion out of you at a time when I’m running low on sympathy-producing stories. How’d I do?

The after-effects of last week’s treatment were as good as any I’ve had. Or not as bad as others I’ve had. Or just a few notches below top-notch but several rocks above rock bottom. Much of it followed the normal pattern: Chemically-addled tastebuds, ravenous appetite, alcohol/toothpaste-induced nausea, and extraordinary tiredness. But that was it. Other treatments have brought on a much higher level of "yuckiness." A year of chemo has taught me that there is no consistency. One "good" treatment doesn’t necessarily mean the next one will be easy, nor does a bad reaction mean the next treatment will affect me badly as well. And you know what I always say: "Better living through unpredictability." Actually, I what I always say is "Better living through chemicals" but I just decided to change it. Now I’ve decided to change it back.

Wednesday, June 27, 2001 at 12:34 AM (CDT)

The word of the day is "stable." We're talking last week's scan results not mental state. The nodules in my lungs have remained the same size for almost a year now. They had shrunk a bit after my first treatment a year ago, and haven’t shrunk or grown since then. While "shrinking" is good, I’m pretty cool with the "not growing" thing. Additionally, the pelvis and abdomen show no signs of metastases (and never have), and the fractured rib (which is what started this whole recurrence thing) has healed. I haven’t had a bone scan for several weeks, but my last bone scan no longer showed evidence of cancer. Medical opinion says that the cancer is still in my bones, but the chemo has done its thing and made it small enough to be invisible to the scanner’s eye.

I don’t get particularly nervous before scans. Fear usually rears its ugly head when I’ve "decided" that something is wrong. A couple of weeks ago my breathing felt shallow and my chest hurt. I was convinced that the cancer in my lungs was growing -- my mind doesn’t go to the standard ailments first. After three days of panic it dawned on me that it was only a cold.

So today was chemo as usual. No change. Now I just sit back and wait for the "chemo funk" to set in, which should happen on Thursday. My taste buds get hit right away, but the rest of my body takes a little longer to catch up. Next treatment: Wednesday, July 18.

For those of you who haven’t noticed, photos are now posted. Click on the link below. For those who did notice and were unlucky enough to have to see the couch picture, you’ll be pleased to know that it has been replaced by another (but not necessarily better) photo. (Photo credit goes to friend Laurie who came from L.A. to visit me last Thursday through this Monday.) The newest photo may elicit a response about my hair growth. Do not be misled. While there appears to be hair growth, what the photo doesn’t show is that for every amount of hair that grows in, an equal amount falls out. Long and thick ain’t gonna happen as long as I’m on this current chemo regimen.

Some of you complimented this Web site, so I must give full credit to CaringBridge.com, the organization that provides this free site to patients. It’s an easy-to-use service that takes about two minutes to set up. Choose a background, choose a font color, and ta-dah—instant Web site. The idea came from a family with a sick baby. They realized that it was impossible and draining to keep up with concerned phone calls and e-mails, so they developed a Web site to keep friends and family around the world updated about the baby’s condition. The baby unfortunately died; her family wanted to provide this service as way to help others with a similar need to keep friends and family updated. Fortunately my current situation is not dire; most of my days are "good days" and I welcome your phone calls and e-mail. But this site certainly comes in handy anyway for updating purposes and as an ongoing forum for what formerly was just once-a-year self-centeredness…for those of you who don’t experience it face-to-face on a regular basis.

Your guest book entries are great! I didn’t pay much attention to that feature until your messages started rolling in. Thank you. It’s nice to see that some of you enjoy having an audience for your messages as much as I do. I know it doesn’t appeal to the shyer of you, who shall remain nameless TRUDY, but I think it’s an entertaining feature. Yes, I will probably start deleting guest book entries as they age; I’d hate to be responsible for any carpal tunnel injuries resulting from your having to scroll too much.

Unfortunately having a Web page doesn’t automatically increase my update material, which is lacking. (I originally put the work "thankfully" before the word "lacking" but I gotta say, I’m more motivated to write about medical adventures. How sick am I?) Your ideas, opinions, emails, and guest book entries are welcome. Perhaps we can come up with some creative Web content ideas. How about a question and answer column for my next posting? Ask medical questions. Ask personal questions. Ask about each other. (Then pay me off not to reveal secrets about you.) Let me know if you want your want your name used, or prefer to submit your questions anonymously. Be creative. This will be fun. Really. I promise.

Tuesday, June 19, 2001 at 10:53 PM (CDT)

Tues., June 19, 2001 at 10:53 p.m. and all is well. Do I have to update this every minute, or will every hour be okay? I'd hate for my faithful readers to miss out on anything important, like details on my midnight snack, time I go to bed, dream info, etc. Or am I missing the point of this journal thing? I've never been into journaling. E-Daling is another story however. The key difference is "audience."

Fri., June 22 marks one year of chemo, this time around. Chemo schedule has stuck to a fairly steady "every three weeks" with few exceptions. No end in sight. My next treatment is Tuesday, June 26.

This Thursday I have a CT scan. It's normal for me to have a chest CT after every three treatments, but to mark my one-year anniversary we're celebrating by scanning a larger area...adding the abdomen and pelvis I think. Or perhaps my right index finger and left nostril. I can never remember.

This larger scan entails fasting for seven hours and drinking foul-tasting contrast beforehand. It also generally entails several trips to the bathroom afterwards.

Okay, that was probably too much information. (It's obviously been a long time since I've sent updates if I really think THAT was too much information.) I'll stop now. Don't want to overdo my first journal entry. Check back next week for CT scan results and other up-to-the-minute details on my riveting and adventurous life in chemicals.

Ideas for this site are still bouncing around in my brain...rather heavily I might add (ouch). Feel free to drop me an e-mail and let me know what you'd like to read in future issues of the E-ME tiMEs!

Click here to go back to the main page.

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