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Tuesday, June 17, 2003 6:47 AM CDT So far, so good.
It's great to be home, spend time with family and friends, eat real food. I'm trying to enjoy every moment.
I'm sleeping OK. Eating has not been a problem (I've even had some of my fantasy foods: potato salad, grilled vegetables, salsa (pretty mild), steak, tomato sauce). My stomach is not happy with me in the morning (I take about 10 pills) but gets better as the day goes on.
I'm not very tired, but I don't have a lot of energy and have not tried to exert myself yet. I can become winded pretty easily. What I really notice is how stiff and inflexible I am.
I can meet (healthy) people outside, but I should stay out of the sun. I've been told not to have people in the house (dealing with the basement is proving to be an exception) and I shouldn't go into other homes. When I go inside (like when I go back to NEMC Thursday and Friday) I need to wear surgical gloves and a mask. I will get the catheters taken out of my chest on Thursday and get an infusion of a drug on Friday.
We're making slow progress with the basement. It's pretty much clean but musty smelling. We'll be getting another dehumidifier today. We've been told the motor on our dryer needs to be replaced and the motor on the washer probably won't last long. I've been told our furnace should be replaced, since all the major components were deep sixed.
Our insurance adjuster has been pretty accommodating so far. He said he'd talk to the MDC (water district) to see what they're willing to cover. I'm afraid getting this worked out could delay putting in the furnace, which I'd like to get going before it gets hotter (it has the blower for our central A/C).
I'm thinking it might be a good idea to build a platform to get the washer and dryer off the floor in case this happens again. But since I don't have the tools, skills or energy to do this, I don't think it will happen. We may get a sump pump, though.
Saturday, June 14, 2003 6:18 AM CDT So far so good. I think I made the right decision in coming to NEMC. I don't think I'd be in any better shape if I went elsewhere. I was well cared for and all things considered, I'm in pretty good health. We couldn't have asked for a nicer, or more convenient, place to stay than the Neely House.
The doctors at NEMC have been excellent. I'd especially like to thank Dr. Miller for his help. Though this road has not been without its bumps, I think it's headed in the right direction.
**********
Home is where the...sewage is?
We made it home yesterday, but not without drama. Thursday we learned that our sewer had backed up, putting 1 1/2 to two feet of yucky water in our basement. Not good news when your immune system is impaired.
The sewer on our street backed up. Our house is supposed to have a one way valve so sewage leaves the house, but doesn't come back in. That didn't work very well. The problem was discovered Thursday by our friend Eva, who we've hired to clean the house. Because no one had been living in the house, and Eva had been using a lot of water to clean, there wasn't much stinky stuff in our sewer to come back into the house.
One thing lead to another. The local water authority (MDC) arrived on the scene. The blockage was cleared, the water drained out. The MDC hired a cleaning crew to sanitize the basement. Friends helped clean up too. We have a mound of soiled stuff on our front yard. Most of it is baby furniture we hadn't managed to sell or give away yet.
According to the manufacturer, our four year old furnace should be replaced (hopefully next week). All the major components were submerged. It's a forced air system, so I'd rather not have it spew sewer water residew all over the house. We don't know the status of our washer and dryer. We lost the dehumidifier, a leaf blower, tools and a chain saw, among other stuff. Two leaves of our dining room table were also soaked.
Over the past couple years I've built shelves in the basement, so much of our "stuff" was off the floor. It could've been worse.
As you might imagine, replacements won't come cheap. Hopefully, between our homeowner's insurance, and the MDC, we won't take much of a hit.
We'd like to thank Eva, Linda Geisler, Jan Chapin, Amy Connors, Amy and Ted Brennan for all their help in getting things back into shape so we could finally come home.
Tuesday, June 10, 2003 9:40 AM CDT Every day is just another transition. Sometimes it happens so slowly, you don't realize it's happening. Other times, the transition happens so quickly you want to smash the clock.
I'm in another transition now, a good one. Assuming no last minute problems, I should be home by Friday. I remember the transition into the hospital, now I'm in transit out of it.
I've met so many good people here. There are so many very competent, caring people working, and volunteering, here.
There are a lot of very ill people here too. They, like I, are in a transition. Are we on our way to health? Or are we beyond medicine's reach? Only time will tell. I'm already dreading my next CT scan. I think I'm going to have to be sedated to sit still long enough to have one. All it will take is the wrong blob in the wrong place and the house of cards known as my life will come crashing down on my head. Again.
Three years of remissions and relapses. It's hard to imagine my life without bad medical news. It's impossible to see around the corner. I don't know if I want to run to see what's in the dark or close my eyes and pretend it's not there.
I guess I feel like someone's who's been attacked and whose assailant got away. He's still out there. Will he be back? When? What will he do? If I was the victim of a crime, I could change my name and live in a different place. You can't hide from cancer.
Overall, I've tolerated treatment well the past three years. The fact I'm doing well is not a great surprise, though I know many things could go wrong. I just hope I'm not being set up for some cosmic joke. He was doing so well...
Since December, I've been in various jams, and I've gotten out relatively unscarred. I got back into remission, which I'm told is unusual for someone with my history. I beat the odds when Leslie was a match. It's been about a month since the transplant, and so far no infections or real issues to speak of with graft vs. host. Luck? Good medicine? Karma? Divine intervention?
What should I learn from this? Faith? The past three years (five including onset of symptoms) I've been through a lot, and I'm still walking, talking, breathing, thinking (to an extent). It's hard for me, even with all this good news, to have faith this will end happily ever after (in this world, anyway).
I have hope it will, and I guess that will have to do for now. Dwelling on the Worst Case Scenario will just drive me that much crazier. I just have to try to put out of my mind that killer who's stalking me. Maybe I finally found a way to get rid of him. Maybe he'll just lose interest.
I have to try to get my life back together again. I have to scrounge up as much glue and chewing gum as I can find and hope it holds together. I hope I'm in a transition to calmer weather. The worst storms better be behind me because I don't think I'll be able to survive another hit.
Monday, June 9, 2003 5:02 PM CDT Doc Miller says I'm doing very well and could be home Friday.
I will turn off the cyclosporine pump tonight and try the pill variety. Hopefully, I'll tolerate it well, though even Doc Miller says the pills stink and need to be aired out before I take them.
I will be infused with a drug Thursday, which some don't respond well to. Hopefully that won't be a problem.
Saturday, June 7, 2003 7:28 AM CDT Greetings from Beantown.
I'm doing well and I hope you are too. It sounds like I'll be seeing Doc Miller at least a couple times next week (Monday and Thursday). Assuming no problems, I'll just need to see him once a week. That means we might be home next weekend.
Doc Miller gave me some prednisone for my stomach, to see if GVH is causing the problems. It's too soon to tell if it will have any effect. It would be nice to get rid of this problem, but as you know, I'd like to stay away from the prednisone (I think it's just a matter of time before I need to take it in any event). GVH is scary, but if I am showing some, chances are better the cancer will go away.
I've been getting outside a little bit. We walked around the block last night. My stamina is pretty much zip (breathing through a heavy surgical mask doesn't help).
Thursday, June 5, 2003 12:44 AM CDT Hi folks! I hope all is well.
I'm doing OK. My counts are going in the right direction. My energy ebbs and flows, but there's always something going on with my stomach. Bloating, nausea, heartburn mixed with a cocktail of meds. Overall, however, Doc Miller says I'm doing very well.
I've had a fair amount of visitors this week: Kaitlin (twice), parents, Bart, Leslie, three of Bobbie's friends from work and Eric & Emily and The Boys (they liked the X Box).
Doc Miller tells me I'll be getting more tired the next month or so. Just when I was becoming a bundle of energy...I hope to be getting off the cyclosporing pump by the end of next week (and onto pills). Then it sounds like there'd be another week of twice weekly visits (assuming all else is well).
A while back I got an e-mail from a woman going through this kind of transplant in Detroit. She had a much tougher time than what I'm going through. She wrote to me that recovery would take a lot of patience.
I also spoke on the phone with someone who had this done at NEMC about seven months ago. He's doing well, back to work part time (they kept his job open for 15 months) but has some signs of GVH (graft vs. host disease, manifesting on his face like sun burned skin). He said it's his experience as you get tapered off the more toxic anti-rejection drugs (like cyclosporine) onto the weaker stuff, the GVH can pop up. If I get no signs of GVH, chances increase it won't deal with the cancer, but too much GVH can be a real problem.
One of the main drugs given for GVH is prednisone, which I would like to avoid if possible (I had that my first go 'round with chemo and probably put on 20 lbs.). Positive self image is not a strong point right now. I wouldn't mind showers so much if not for the mirror. I look like an old, fat, bald (not necessarily a bad thing), sick man with tubes sticking out of his chest.
Of course, do you think daytime TV lacks for diet and exercise equipment ads? Is there no shortage of weight loss/muscle gain miracle stories to fill the airwaves? All I need is the $1000 piece of equipment and work out three times a week, 20 minutes each time, while gulping handfulls of speed.
I suppose though, it's easier to lose weight than lose cancer.
Tuesday, June 3, 2003 10:00 AM EST From Bobbie:
A day in the life (yesterday) of the fearless caregiver.
8:00 Make breakfast and clean up (WELL done eggs)
9:00 Hook up new anti-rejection drug on iv. Clean and flush all ports.
10:00 Visiting nurse comes to show us how to set up magnesium iv.
10:30 Go to the other side of the hospital for doctor visit. Forget Rodney is an outpatient so needs his red card. Set Rodney down in waiting room with lots of sick people. Head back to Neely House to get card then back to hospital.
11:00 Rodney's blood is taken and we wait for results. Go to Neely House to prepare lunch to go then back to the waiting room.
12:00 See doctor. Good news is counts are up and he doesn't need blood products today. Dr. Miller is working with a rookie Dr. Kwack (no lie) because most of the staff is at the ASCO (American Society of Clinical Oncology) conference in Chicago. Dr. Miller instructs Dr. Kwack to write scripts. She writes two scripts and tells me I can get the folic acid over the counter.
12:30 Get Rodney back to Neely House. Start administration of the magnesium iv which takes 4 hours.
1:00 Head to pharmacy around corner to drop of scripts. They will be ready in a half hour.
1:30 Head back to pharmacy. Pick up folic acid over the counter but the dose is wrong. I ask pharmacist about the dose---he says that is available only by prescription. Okay, can I have the other ones? Nope, won't be ready for a half hour. That's what you said a half hour ago.
Also they can't find the script I dropped off Saturday that was out of stock. I need to get a new one.
2:30-Head back to hospital to get doctor to get a new script for Actigall and tell Dr. Kwack you need a prescription for folic acid. I run into our real doctor in the hall (yea!) and he writes everything up for me and apologizes for the folic acid.
3:00-Head back to pharmacy. Drop off the two new scripts. Counter guy tells me they still don't have the Actigall in stock. I get a little ticked off---telling him that was true Saturday but a shipment was supposed to come in this morning. He checks again, yes they have it. Tell them I will come back in an hour.
Decide this is a good time to take a run because I am irritated by bureaucracy. Run fast.
4:00-Back to pharmacy. Pick up everything except one script is half filled-pick up the rest tomorrow. Go back to Neely House and start giving Rodney pills. I determine that the one script for his heartburn only has one pill in it! Another error by doctor. Okay, now this is comical.
4:30 Head back to hospital to get a new script for the heartburn medicine. Dr. Miller is now feeling bad for me and apologizes again and writes me a script with 3 refills.
5:00 Head back to pharmacy to drop off prescription. Tell them I will come back tomorrow.
5:00 Back to Neely House. Need to cook dinner-chicken is frozen. Shower, cook, clean, read, sleep.
Oh, also write up spreadsheet for Rodney to keep track of his 11 meds, ivs, syringes and creams.
Saturday, May 31, 2003 5:04 PM CDT I made it out of the hospital. I'm writing this from our apartment at the Neely House.
I made it through phase one of the transplant on schedule and without any serious problems. Wonders never cease.
My appetite has improved, but the ol' digestive tract ain't what it used to be (at least not yet). I did manage to sneak in a few Cheetohs this afternoon though. Tonight's menu will be mac and cheese and peas.
We have a studio apartment. In total, I guess it's about 20'x20'. We have our own bathroom, kitchenette, full bed, two sofa beds, TV/VCR, wood floor. About half the apartments here are vacant. I plan on seeing Bart and my parents tomorrow (maybe with a special guest).
I'm guessing we'll be here for a month, but I've heard it may be faster. Assuming no fevers or serious GVH problems, we'll be seeing Doc Miller twice a week.
There are living rooms and kitchens in the communal areas for visiting. When I leave the apartment, I need to wear a mask and gloves. I can walk around, but should avoid enclosed areas with sick people (like a hospital) and sunshine.
I will carry with me a "fanny pack" with a pump and the anti-rejection drug cyclosporine. I think I will be having this for about a month (then go to pills) but I'm not sure. Sure beats lugging around that ____ ____ IV pole around.
I couldn't have made it without Bobbie. I don't know what I did to deserve her. I pray she never gets as ill as I am, so I'll have to re-pay her some other way. "In sickness and in health" was a pretty abstract phrase when we got married. It's a very hard reality. We really should be doing much more productive things. I know of someone who went through this kind of transplant after getting divorced. The worst of both worlds.
Friday, May 30, 2003 1:14 PM CDT From Bobbie.
I'm feeling a bit philosphical today and found this on the Neely House web site.
"Cancer leaves you drained, exhausted, nauseous and looking for answers. Then there's what it does to the patient."
Or more humourously: "Cancer is so strong it can cause the entire family to lose their hair." I haven't lost my hair but it is turning more gray.
I am busy preparing for Rodney's arrival to my pad. Maybe we haven't explained this very well but the Neely House is a wing of the hospital that has been converted to apartments for cancer families to stay while members are undergoing treatment. It has made things so much less stressful! One of their big fundraisers, a celebrity golf tournament, is this weekend on the cape. For non-sport fans, Cam Neely was a famous hockey player for the Boston Bruins. Both his parents died of cancer.
I'm about to turn into a clean freak and for those of you who don't know me well, that's quite a change from my usual habitat.
Kaitlin is doing well. Both her and Daddy look forward to next week when she can come for a visit.
For those who ask, I'm still running and eating and sleeping well. I'm working hard at not getting sick myself; I'm a maniac hand washer.
May was a long month and I don't know what I did but I felt busy juggling visits to Rodney and Kaitlin and taking care of everything here. It'll be strange with Rodney in the same room---maybe I'll be more productive since I need to be with him and can't venture on two hours walks around the city. I really like Boston---too bad it's too expensive to live here.
Rodney is doing very well today (Friday) and we await a decision on a discharge date.
Thursday, May 29, 2003 2:29 PM CDT Just when you're in the home stretch, somebody moves the finish line.
I'm having problems with nausea, which could be caused by my meds, the radiation, graft vs. host disease, or a combination thereof. The projected Saturday discharge is looking too optimistic at this point. To be discharged, I'm going to have to be able to eat and drink enough to get by without my IV food and hydration. That's certainly not the case now and I don't know if I'll be able to turn it around by Saturday.
This too shall pass. Just not fast enough.
Wednesday, May 28, 2003 6:09 PM CDT Things are moving along faster than I expected.
I took a walk this afternoon (I guess my blood test numbers were good enough) around the halls. Had to wear gloves and heavy duty mask. It was tiring. I read about how fatigued this process would make me, but reality is another thing. Getting out of bed can be a major event.
Expected discharge (barring last minute disaster) is Saturday morning. The next couple days will be the longest of the month.
Kept eating today. Stomach felt pretty good until now. Hopefully this will pass uneventfully.
Thank you for your support. (Remember "Bartles & James"?)
Wednesday, May 28, 2003 10:53 AM CDT The end is near.
Assuming no nasty surprises, I think I could be discharged by Monday. My numbers are looking good, but not quite there. My white blood count is good enough to get me out of the room, my neutrophil (sp?) count is not. The white blood count is the total number of white cells, neutrophils count those that fight infections. I would guess I could be walking the halls in a couple days. I think tomorrow would be too soon.
I'm on day two of eating. Yesterday was rough. After a week of not eating, the ol' digestive tract was not used to being busy. I hope today goes better. My stomach feels much better today than how it felt at this time yesterday.
Sunday, May 25, 2003 9:28 AM CDT It looks like my white blood count went up about 200 points, so I have "bottomed out" and things should only get better. I am very tired. I felt like I had the flu for a couple hours yesterday afternoon (though my temp. stayed normal). From what I understand, I will be sleeping quite a bit over the next couple months.
I hope to be eating and out of the room by the end of the week, Lord willing.
Friday, May 23, 2003 10:07 AM CDT So far, so good. I'm feeling OK, and doing well, from what I'm told (though it doesn't take much to tire me out). My attending physician says my blood test numbers are bottoming out (a good thing). That's a sign that my old marrow is petering out, which leaves more room for the new marrow.
The new marrow is doing its thing, that is, it's engrafted into my bones and started making white cells. That's another good thing because a common side effect of failure to engraft is death (doesn't happen often, failure to engraft that is, not death) and hopefully new white cells will prevent infections and clean up remaining cancer cells.
I've looked at the blood test results for the past week (not that I understand them) and some numbers are going up and some are going down.
As more new white are made, the chance of graft vs. host disease increases. As far as can be told, no signs of it yet. There are two kinds of such a disease. First, my white cells could see the donated cells as foreign and go after them. Second, the white cells created by the donated marrow could see me as foreign and do unpleasant things. For the first kind, a preventative treatment is photopheresis, for the second kind I'm on an anti-rejection drug and will be given steroids (from what I understand).
I have about 5-10 per cent of the number of white cells of the average person, so I don't think I'll be going any where any time soon.
I'm bald as a billiard ball again. It got to the point where I could pull hair off in clumps (caused by chemo and radiation), so I figured it was time for a shave. After treatment at Yale last year, I shed like a dog. Even the eyebrows went. Hopefully that won't happen this time.
Thanks to everyone for their cards, thoughts, prayers, good vibes, etc. I hope you are all well.
Wednesday, May 21, 2003 11:59 AM CDT The good news is it appears the new marrow has engrafted and started to do its thing. According to Doc Miller, the new marrow first makes a type of white cell (monocyte) first. Those cells are on the rise.
The bad news is, Doc Miller wants me to stop eating due to fissure issues (to limit the amount of action down there on the South Pole) until my white cell count is highter.
I haven't eaten in a couple days (I'm getting nourishment via IV) and I think it's fair to say I feel like I'm starving. I was up for three hours last night thinking about food. Barbequed ribs. Chicken fajitas. Potato salad. Grilled vegetables. Italian sausage, saute'd peppers, onions, mushrooms, tomato sauce on ziti. Pizza. Grilled steak. Corned beef hash, home fries, two eggs over easy, toast. Roasted chicken, stuffing and gravy. Chicken salad sandwich. Potato chips with onion dip. Strawberry shortcake...
According to my web searches, 800 million people go hungry every day (out of a total population of about 6.3 billion). 23 children die every minute due to hunger. I guess I'll just have to show some solidarity with my less fortunate neighbors for a while.
Tuesday, May 20, 2003 10:21 PM EST From Bobbie:
The digital pictures came out terrible so you'll have to use your imagination of Rodney's view from his room, Bobbie in mask and gloves and Kaitlin on mother's day. I need to find a new developer in Chinatown.
For all the DISCers who keep asking what you can do: SELL, SELL, SELL!
We are waiting, waiting for the counts to go up. I started a pool with the nurses but I'm all ready out (wishful thinking).
Not much to say. Rodney is feeling and looking much better but the isolation thing is making him a little insane. I probably make him jealous coming and going out the door.
Tuesday, May 20, 2003 9:00 AM CDT Patience is a virtue, isn't it? I'm trying to be virtuous.
I'm told I'm progressing as expected. I don't have any serious problems, just couple minor things to distract me.
I'm in a holding pattern until there's signs my new marrow is starting to do its thing. Doc Miller told me that could happen in a couple days. I hope to be walking the halls by the end of the week. But that's not a certainty and the end of the week seems months away.
Where's the fast forward on this thing?
Monday, May 19, 2003 3:51 PM EST FAQS answered by Bobbie:
How's Rodney?
Much better the past 3 days than the prior 3 days.
How are you?
Fine. I have an on and off headache but otherwise I am okay.
How's Kaitlin?
Very good. She is having a blast with her cousins but she cries everytime I see her then leave. I'm trying to see her twice a week with a one night sleepover.
Are you eating/drinking well?
Depends on the day. Usually yes.
When are you going to post some pictures?
Soon. We'll put a note in the journal.
What's the highlight of your days?
When the elevator is on my floor when I approach it.
Friday, May 16, 2003 10:13 AM CDT I'm about half way through my stay here at the Nausea Hilton (assuming all goes well). It looks like in a matter of a couple days (I guess) the bone marrow I used to call mine will be ground down to nothing.
That's good news and bad news. It's good news because that's necessary for the whole procedure to work. It's bad news because it opens up a great big Pandora's Box. Not having functioning bone marrow means many things, most importantly, no white cells, no way for my body to defend itself against infections. It also means not having any new red cells or platelets, but those can be easily transfused.
Not having an immune system is a scary thing. It's a hypochondriac's dream (nightmare?) come true, because, possibly, every little bug really could kill you. It's a calculated risk. As a patient, I have to act like a hypochondriac and tell the nurses & doctors everything that feels/looks/smells like it's going wrong. Then at the early stage of the problem, I get bombed with antibiotics and the problem's resolved. That's the theory, anyway.
Then Leslie's bone marrow needs to engraft into my bones and start making red and white cells. Another Pandora's Box. The good news is the white cells would start taking care of any infections and (hopefully) any malingering cancer cells floating about my body. The bad news is, those white cells could misbehave and make life unpleasant in a variety of ways.
Essentially, I'm coming upon this procedure's Moments of Truth. Will the new cells engraft? If so, will they make white and red cells? Will the white cells behave or misbehave? Past is prologue.
This procedure is very much a leap of faith, not only in medical science but of any Higher Being pushing the buttons. Walking on the edge, I'm not used to grasping only onto faith (in either medicine or God). I've always tried to cover my bets, made sure there was a Plan B. Those are luxuries I no longer have. I have hope in both medicine and God, but given the past couple years, "faith" is asking a lot from me. It's something I'm working on.
Many have done well with this procedure and the chances of me meeting my end any time soon is small. But this will truly be a test of my mind, body and spirit. I just wish it were multiple choice.
Monday, May 12, 2003 3:05 PM CDT I enjoy staring out into space as much as the next person, but even I can only take so much. Sure I've got lots of cool DVD's people have given me, about 60 CD's to listen to and a variety of books to peruse, but nothing is floating my boat. Sure, the PBS documentary on the decline of the stellar seal was fascinating beyond description (did you know that during Alaskan winter nights, herring form giant living balls (herding behavior of a sort) that swim near the surface of the ocean water, making them easy prey for all sorts of carnivore (be it mammal, fish or foul)?).
Between waves of nausea and drug induced unconsciousness, I really don't want to do anything. Brain is mush. Mud. Doo doo. Ka ka. I'm sure in only six or seven minutes I might be able to come up with my telephone number. 860, right?
Oh goody! I've just be rigged up for MORE chemo! Just when I thought my stomach might stop being a bubbling cauldron of pain, MORE chemo. Not to fear! I've been told it's "well tolerated." A doctor suggests a treatment that's "well tolerated" you should: a) sprint out of his/her office, no matter your state of dress, b) find every framed diploma or certificate in his/her office and smash it on his/her head, c) file a malpractice claim in superior court or d) all of the above.
And I only have three more weeks of this. Things could get much worse. I could be looking back on the past couple days as "the good old days." Before the mouth sores. Before the rampant infections. Before the gallons of...I'll skip that one...
You can only prepare so much for this. You think, OK, in the hospital for a month, what do I do? NY Times every day. Read those books I always wanted to read. Stack of comedy DVD's to watch. Watch TV. It's not that simple. Your strength goes down. You're tired. Keeping your lunch down takes major effort. Nurses come and go. The food just plain sucks. I would pay good money to open this window. Just the smell of this place (not to mention me) alone turns my stomach.
I used to think, if I were ever to go to jail, to avoid any unwanted contact with my comrades, I'd prefer solitary. This experience has changed my mind.
And every morning, The Parade. The attending physician. The resident. The fellow. The nurse manager. The nurse. Fred from down the hall who just happens to drop by. The electrician working on the next room curious about all the hub ub. "How are you feeling today?" Well, I look like a bleary-eyed puke bag, how do you think I feel? My system is in the ultimate state of flux. I'm in the process of killing off one set of bone marrow, so an entirely new one can take up residence. Hell, why not replace a few organs while we're at it?
I feel just _______ fabulous! I'm having a tough time restraining myself from performing a series of cart wheels! I feel so good, I'm half way through volume two of an encyclopedia set I've decided to write. "Euphoria" doesn't even scratch the surface! I want to bust out in _______ song, I feel so _______ good! If I could bottle how good I feel, it would be illegal.
For all you MASH fans, I think Charles Emerson Winchester, III, summed it up best when he was tape recording a letter to his sister and found a rubber chicken in his tea pot, "Get me the HELL out of here!"
Monday, May 12, 2003 9:55 AM EST Another message from Bobbie:
Everything is "normal" here in Boston. Rodney's counts are starting to drop so he's sleeping a lot. He is feeling the effects of all the chemotherapy and radiation which means he's pretty nauseous.
Last night he had five drips from his iv pole. One is the 24 hour anti-rejection drug, another is salt water so he doesn't get dehydrated, third is TPN (food) since he can't really eat much, then two anti-nauseau drugs. Everything goes through his catheter so he doesn't have to get poked with needles.
Sunday was better than Saturday so we continue to take things one day at a time.
Happy belated mother's day to all the moms (especially my mom and Rodney's mom). Kaitlin and I spent the day in Newport, RI with Beth's family. We walked on the cliff walk then out to lunch and ice cream.
Monday, May 12, 2003 8:51 AM CDT Why me Lord?
What have I ever done,
To deserve even one,
Of the blessings I've known.
Why me Lord?
What did I ever do,
That was worth love from you,
And the kindness you've shown?
Lord help me, Jesus,
I've wasted it,
So help me Jesus, I know what I am,
Now that I know,
That I've needed you so,
Help me Jesus,
My soul's in your hand,
Try me, Lord,
If you think there's a way,
That I can re-pay,
What I've taken from you.
Maybe Lord, I could show someone else,
What I've been through myself,
On my way back to you,
Lord help me Jesus,
I've wasted it so,
Help me Jesus,
I know what I am
Now that I know,
That I've needed you so,
Help me Jesus, my soul's in your hands,
Jesus my soul's in your hands.
-"Why Me Lord" Johnny Cash
Friday, May 9, 2003 4:32 PM CDT This message is from Bobbie.
T-0, Transplant day was a success!
Rodney is soundly sleeping now (normal) and Leslie is on her way home to the suburbs.
Leslie was here from about 7am-5pm. She did great through the surgery and the doctor said she "gave generously", in other words, they got a lot of bone marrow. The nurses tell me the more the better. She did well with the anethesia and was in good spirits when she left. Thanks Leslie, for being the hero of the day and helping in a way none of us could.
Rodney received the bone marrow at around 2:00pm. I had to leave but when I came back at 3:30 he was sleeping soundly and hasn't yet awakened. Everything went in fine; it's just like a blood transfusion into his cathether.
Rodney is feeling very weak and still nauseated. That is all normal. The doctors said this morning he'd "feel like hell for about two weeks." I just hope he sleeps through most of that time.
It's all pretty strange---this whole process. You can't think about it too much because you sort of just shake your head in amazement. Even doctors call it a bit of "voodoo" because they don't really know exactly how it all works.
We hope we are madly celebrating May 9th as a rebirth for many years to come. Thanks for all the emails and web posts; keeps us going.
Friday, May 9, 2003 7:57 AM CDT My room is cluttered. I have a laptop computer, portable DVD/CD player, telephone, answereing machine, transistor radio, headphones, TV, VCR, furniture, hospital bed. I have all sorts of medical devices to test my blood pressure, temperature, heart and lungs, small refrigerator, assorted snacks, clothes of various descriptions. I have a window that looks out onto the world of the south, filled with so many people busy with their lives.
Nurses and doctors come to see me. My parents, uncle, brother and wife have been here. Soon, bone marrow from my sister will be dripped into me. I pray it will mark the beginning of the end of my tango with Hodgkin's diesease.
There's so much in my little room. But there's such a huge gap in here. I feel like I'm trapped in a huge balloon floating around, searching. There must be something more here than medical mechanics and photos of loved ones and trinkets to keep me occupied.
Is God here? And if so, what is his purpose? Toy with me? Test me to my breaking point? Does he want to see how much I'll suffer before I forego His Name? Is this a battle over cancer cells or life ever after? Will the God of foregiveness grace me with his presenence and grant me an easy pass back to health?
I've been through a lot. I have been dealing with this for years. When will it end? An uncontrollable infection? Incompatible cells? Cancer cells triumphant? Am I the captain of my ship at the helm, or the stow away cowering in the hold?
There have been times when I felt God's presence in a way. I have gotten through some tough times with His help. I'm just unsure how many more chances I'm going to get.
I know of many pious people dying in terrible ways. I know being faithful and fearless is no guaranteed defense against disease and death.
I am truly facing my test of faith. It's a test where there are no scribbled answers on a crib sheet. I have to make up my mind what power exists in the great beyond and whether it loves me enough to turn my health around. It's certainly blessed me beyond measure up until now. But will the blessings continue, or has my ration run dry?
Only time will tell. It could be a long wait to see how this Grand Experiment turns out. I know first hand how fickle God can be. Health is here, then it's gone. Trust can be difficult when things going so well end up turning so wrong.
I don't know how I'll do on this test. I have to hope for the best and hope that God has bigger plans for me. It would be hard making this world a better place if I'm dead. I've learned a lot and I hope God will allow me to teach others with my words and actions about what a wonderful life you can have. I just hope God thinks I'm worth more alive than dead.
Tuesday, May 6, 2003 2:45 PM CDT I think of Kaitlin all the time. I miss here round, dimpled, blue-eyed face. I miss her smile. I miss her hugs. I miss her kisses. I miss her questions that have no answers. I miss her asking me to play with her. I miss her flipping through books and making up stories that go along with the pictures. I miss her skinny, long legs and how she runs with her arms swinging back in forth in 90 degree angles. I miss putting her to bed and waking her up. I miss helping her dress. I miss watching her pick clothes that have no relevance to the outside weather and whose colors would only match for someone on LSD. I miss cooking for her. I miss making banana bread and pancakes with her. I miss watching her eat. I miss her picking at her dinner then asking about dessert. I miss how she eats her favorite doughnut, chocolate frosted with sprinkers (just the frosting and sprinkles). I miss watching her play with her friends. I miss her talk about homework and going to kindergarten. I miss tickling her. I miss the three of us laying on our bed after a long day with the Red Sox on the TV. I miss chasing her around the house and playing hide and seek (she tells me where to hide). I miss watching her create little worlds with her Barbies (and Ken, even if he only wears a bathing suit). I miss the look of pleasant shock when we tell her we'll be doing something she'd like to do. I miss giving her a bath. I miss....everything about her.
I miss planning things to do with her. I miss thinking about how I'm going to help her grow up over the years. I miss thinking those Daddy thoughts, like what she'll be like in high school, whether she'll go to college or get married. My body is so screwed up. My health hangs on a roll of the dice. Planning ahead is about as useful as wondering what it would be like living in another solar system.
I hate this disease. I can deal with the time it's taken from me so far, but I don't even want to think about all the time it may take from me in the future. It's robbed me of my comfortable little life where all I want to do is care for my family and friends. If I get through this, I will be the simplest, most boring, least ambitious, happiest SOB you ever met.
******
I'd like to thank the good people of DISC for enabling me to remain connected to the outside world while sitting in my hospital room. I'd like to thank Bobbie for all her work in finally getting everything set up.
******
It's Tuesday. I was admitted Friday. I've made it through two days of photopheresis (Thurs. (oupatient) and Fri.), two days of chemo (mid-Sat. to mid-Mon.) and two sessions of radiation today (one more tomorrow). I then have a day of cyclosporine (anti-rejection drug) Thurs., then I'm infused with Leslie's bone marrow Fri. Then more chemo Sat. and Mon. Then the waiting begins. Waiting to see if Leslie's cells migrate into my bones and start making cells of their own. Waiting for signs of infection or graft vs. host disease. I'm not good at waiting.
I felt pretty lousy yesterday morning. I tossed my breakfast then slept until 1:00. Radiation can do all kinds of interesting things like burn your skin, produce sores in your mouth, make you nauseous or provide you with a goodly supply of diarrhea. So far, so good.
******
I'm in room 8038. It's a private room with my own bathroom and shower. A large window looks out to the South. I can see a part of the Mass Pike and the trains coming and going from South Station. I93 in both directions can be seen.
The most interesting thing to watch is the condo complex being built next door. They've completed about 5 stories. Iron workers are building it now. A large construction crane hangs over the site. It's a fascinating dance that goes on between the crane and the workers at the site. The crane is like a god above, providing essentials from on high, from steel floors, iron support beams to port-a-potties.
I'm not allowed to leave the room, except for radiation treatments. Everyone who comes in needs to be healthy and wear surgical gloves and masks. The door is mostly made of glass. Sometimes I look outside to see what's going on.
Cable TV here sucks. I can watch the Braves (WTBS) and the Cubs (WGN) but since there's no NESN, no Red Sox.
Tuesday, May 6, 2003 7:31 AM CDT This message is from Bobbie.
So far so good. The chemo is done and tolerated well; Rodney had a bit of trouble with the nauseau Monday morning (he says the food isn't good here anyway) and he is fairly tired. I visited him at 1:00pm yesterday and woke up him up for the day.
Today (Tuesday) he has two rounds of total body radiation, about 20-30 minutes each. Another round on Wednesday morning.
I'm having difficulty hooking up Rodney's laptop in his room. I was told there was a direct internet connection (T1 line) but that's not true just a dial up. Of course, the laptop we planned to use doesn't have a modem. I'm working on plan B so he can see all your messages.
This web page doesn't allow me to edit past journal entries but there is a mistake in the original schedule. Leslie gives her bone marrow on the same day Rodney receives it, this Friday. They originally gave us a date of 5/1 for donation. Anyway, the whole process happens on Friday. She'll come in early in the morning and they'll transport it to his room under heavily secured guard. That's a joke but at Yale his stem cells were delivered with a guard.
I'm getting set on a schedule. Get up, deliver the newspaper to Rodney then work in the morning from my room. I visit Rodney after lunch for a couple hours then go run through Boston Common and along the Charles then visit Rodney again until he goes to sleep. I'm going out to the suburbs to see Kaitlin tonight!
Saturday, May 3, 2003 12:50 AM CDT This message is from Bobbie.
Rodney is officially an inpatient and in reverse isolation. That means he's stuck in his room and everyone who comes in must wear gloves and a mask. It will reverse (Rodney will wear mask/gloves) when he is out of the hospital.
He is without pc until Monday---we need some IT assistance to get his laptop hooked up to their network.
The two days of photophersis went without incident. They take his blood out, skim off the white cells, give the white cells a drug, subject them to ultra-violent light then put the blood back in the body. He's doing chemotherapy Saturday and Sunday. Radiation starts Tuesday.
For those of you asking, I'm fine. The setup here at the Cam Neely House is great. It's really a wing of the hospital that has 16 studio apartments; very convenient! My mail can be sent to the same address as Rodney (on the home page) but replace "The Neely House" with the BMT Unit address.
Monday, April 28, 2003 8:51 AM CDT It's getting closer to T-Day (transplant day). If all goes according to plan, T-Day is May 9, so we're at T plus 18 Day. I get my catheter put in tomorrow morning. It will be a tube with a major vein at one end, with the other end sticking out of my chest (allows for blood to be taken out, or drugs put in, without needles). Efforts to lessen potential graft vs. host disease start Thursday in an outpatient basis, continue Friday, when I'll be admitted to the hospital. I'll start getting drugs to impair my immune system Saturday.
This is no longer a theoretical abstraction that results in detatched conversation. It will soon hit the fan. Right now, this whole thing scares the (you fill in the blanks) out of me.
Dr. Miller says the most common problem with transplant patients is boredom. Things go well and they're stuck in a hospital room. I've heard patients are also fatigued and cranky. Boredom, fatigue, crankiness. I can deal with that.
Vision impairment. Organ damage or failure. Pneumonia. Fungal infections of the lung or liver. Graft vs. host disease. Mouth sores. Loss of short term memory. Failed engraftment. Shingles. Uncontrolled viral or bacterial infections. Secondary neoplasms (i.e., cancers caused by the treatment). Death. Am I thinking about these things? No way. Not a chance. Not for a second. They don't register at all. Not even a concern. Cool as a cucumber. This will be a piece of cake.
If you believe that, I've got some real estate you might be interested in buying.
Wednesday, April 23, 2003 1:33 PM CDT "Are you sure you want another one?" I asked my sister in law, Beth (Bart's wife). "Definitely," she responded.
We were watching her three sons and Kaitlin eat supper in Beth's dining room, at least, that's what they were supposed to be doing. Kyle is 11 years old. He is a reader and resident Game Cube authority. Colin is seven years old. He is a budding hockey goalie and blessed with brothers both younger and older than he. Brian is five years old. Of my local nieces and nephews, he is the closest in age to Kaitlin, though at times I think a ten year old is trapped in his body.
Kaitlin will be staying with Bart and Beth for about two months. She did the same last year for about a month when I was treated at the Yale Cancer Center. Kaitlin's basically a good kid, which makes it easier, but they obviously have enough to keep them busy. Kaitlin was very excited when she heard she'd be living with Aunt Beth for a couple months. I think Beth likes having another woman in the house, for a change.
My first memories of Bart are fighting with him. We were kicking each other while sitting on our sofa. Growing up, Bart was active (playing baseball, soccer, basketball). I was...not (bumper pool was more my speed). Thankfully, as time as passed, we've grown closer as we've experienced similar things. Bart was my inspiration to go to law school. I figured if he could do it, I sure as Hell could.
When Bobbie and I became parents, we were told of various "good" ages to look forward to. I think all of Kaitlin's ages have been good (two was less good than the others). Spending time with Bart's kids, Leslie's kids, my friend Eric's twin boys (almost in high school) has made me realize how much more good stuff is left in Kaitlin's childhood. It's made me realize how much I have to miss if I don't recover from this illness.
There's so much dread when it comes to dealing with "teen age" issues. I certainly won't complain if I'm here ten years from now. It's my job as a parent to help Kaitlin. I can't help her if I'm not here (especially when she's facing the hardest issues).
Beth lost her mother to cancer when she was 12 years old. She's involved in a walk-a-thon to benefit the American Cancer Society on May 16. The "Relay for Life" will start at 7:00 pm and end at noon the next day. Beth is a member of a team whose members will take turns walking on a track. Show Beth some love! E-mail me and I'll let you know how you can donate.
********
We got some good news on Tuesday (4/22). I had a CT scan and there are still no tumors to be seen. We got official word from our medical insurance carrier (Anthem Blue Cross Blue Shield) they will pay for the transplant.
We also learned Tuesday there's room for us at the Cam Neely House, which is housing for cancer patients and their families at the hospital. There are 16 apartments with two kitchen and living rooms for residents' use. An unused floor of one of the hospital buildings was gutted and (after spending $2 million) turned into housing. A link for the house is on this page, though their website is out of date. Bobbie will stay there after I'm admitted and the two of us will be there for about a month after I'm discharged. This will be a big convenience for us. The charge is $10/night. If we had to stay at an apartment or hotel, that would've been paid for by my medical insurance. You can imagine what a big help the Cam Neely House is for families who don't have the insurance, or resources, that we do.
On the down side, I had a lung capacity test last week, and it looks like I'm showing signs of wear and tear from scarring from past tumors and chemotherapy. The results came as a surprise to me, because I'm having no problems breathing, but I haven't been very athletic recently.
Friday, April 18, 2003 5:59 PM CDT "Daddy, you look like an old man." Kaitlin made that observation this morning.
Anyone who's been treated for cancer can tell you, when you deal with the Big C, you deal with the little c. Chemotherapy does many things, including constipate you. Chemotherapy can nauseate you. Drugs that treat nausea also constipate you. It's a double whammy.
I've had a lot of chemo since December 2000. I've taken a lot of drugs for constipation. (One of Kaitlin's toys is an empty container of stool softeners.)
The worst constipation I've had was during my last chemo treatment. (I have to admit, a contributing factor was that I was not drinking enough liquid.) I've never given birth, but I have an insight as to what it must feel like. You know you're in trouble when you want to bash your head into a wall to distract you from what you're feeling on the other end.
A month of passing bocce balls is bound to cause you problems in the South Pole, and I got 'em. In the land of rampant bacteria I tore a muscle. Given how suppressed my immune system will be, this may be the site of an infection, the likes of which I would rather not think about. If I die of an infection, and my family is evasive as to its precise nature, I may have passed to my final reward because I developed a terminal pain in the butt.
Dr. Miller seems confident he can keep things under control down there. The two other transplant doctors we spoke to didn't seem to think this was a major obstacle (one of the reasons I went with Tufts is that Dr. Miller seemed to be more pro-active on this issue). I recently spoke to someone who had a transplant at Tufts six months ago without a problem. He shared my same predicament.
To help improve my situation, I've been told to use a sitz bath. It's a source of fascination for Kaitlin. As I was sitzing this morning, Kaitlin made her astute comment. Nothing like a child to help build one's esteem, especially while soaking one's butt while sitting on the can.
Wednesday, April 16, 2003 7:52 PM CDT I had to get cancer to make me appreciate how blessed I am. You don't often think about the basics when there's so much to do, so many places to go, so many things to get. When you're not sure how much time is left, you think about what you've done, where you've been, what you have.
Maybe it's taken this transplant for me to appreciate my sister, Leslie. She will be donating some of her bone marrow (about a liter) to me. This procedure will not be without pain or without risk, but she's doing it anyway.
She is giving me my best chance at success. "Success" is most often used to mean wealth, fame or power. For me it means living. It means an opportunity to be a husband, father, son, brother, friend (hopefully better than before). That would be "success" enough for me.
After I am given some drugs and radiation to make room for this new marrow, Leslie's marrow will be given to me via IV. The plan is that her marrow will migrate into my bones and produce white cells. The theory is my immune system is not up to the job of killing cancer cells that have lingered after chemo. The hope is that white cells produced by Leslie's bone marrow will be able to do that job.
Blood from me, Leslie and brother Bart was tested in December to see if there was a match (Bart was not). I had about a 25% chance of matching one of them. Getting marrow from a sibling decreases the risk of graft v. host disease, in which the donor white cells misbehave and cause trouble.
There are no guarantees this procedure will work. But I can guarantee Leslie is doing everything she can to help me. Getting cancer makes you learn that there are those who SAY good things TO you, and those who DO good things FOR you. As you can imagine, those in one category are far more helpful than those in the other. Leslie is a do'er. I couldn't ask her to do more. After all, she's giving me blood (marrow too).
Anyone who knows Leslie isn't surprised she's helping me. Helping is what she does. Ask her family and friends. I haven't been as grateful to her as I should be, and that will have to change. I hope that mixed in with her marrow, will be her desire to help others. I could use more of that.
Friday, April 11, 2003 2:39 PM CDT Schedule:
4/22/03: CT Scan and another doctor visit at Tufts.
4/29/03: Put in catheter (not the kind you're thinking about, outpatient)
5/1/03: T-8: Photopheresis (outpatient)
5/1/03: Leslie donates her marrow
5/2/03: T-7: Photopheresis and admit to hospital
5/3/03: T-6: Immniosuppressant drugs
5/4/03: T-5: Immniosupressant drugs
5/5/03: T-4: Rest
5/6/03: T-3: Raditation (2x)
5/7/03: T-2: Radiation
5/8/03: T-1: Rest
5/9/03: TRANSPLANT DAY
Tuesday, April 8, 2003 3:37 PM CDT This page has just been created. Please check back for additional updates.
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