Journal History

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Wednesday, April 21, 2004 9:13 PM CDT

Day: 1yr. 8mo. 21 days

Everyone is probably wondering why it has taken so long for a posting on my condition. Well, the good news is that there is nothing bad happening and I am back from my 6 month check-up at Dana-Farber yesterday. First to give you guys the numbers for my bloodwork (for those of you keeping a scorecard of the progress) My White Cell count was 6.8 which is significantly higher than it has been in the last several years. (Normal range is 4.8 to 10.8) I have been below 1.0 several times and never above 4.0 since being diagnosed back in 2001. Red cells were pretty good at 4.18, still below normal range (4.7 to 6.1) and Hematocrit was also below normal 38.6 (normal range is 42-52). Dr. Antin said not to panic that the counts are remaining steady and just growing very slowly. At least they are going in the right direction slowly which is encouraging. Also platelet count was 190 (range 150-400) and that number is also about the highest I have been in the past few years. Overall Dr. Antin was pleased with my progress and just warned me about still being susceptible to colds and infections. He told me to wash my hands frequently and stay away from people who are sick just to be on the safe side. No sense making my body fight off an infection if I don’t need to. He told me that I probably would continue to get colds, etc. and that this is a long-term recovery and those things are bound to continue to occur. He prescribed Zyrtec for my newly acquired allergies that I seem to have. I’ll let you all know how well it works!

On to the really cool information about my donor. I received a letter a few weeks ago from Dana-Farber who forwarded me my first correspondence from my donor in Germany! The letter was brief and was apparently translated into English for her. Her name and her kids’ names were blacked out since she is probably not aware that the Bone-Marrow group censors any personal information that could possibly be used to trace who the donor was until the 2 year moratorium on communication is over. The following is the text of the letter:
Dear Mr. Unknown,
Thank you for yur 2 letters. I was very happy, that you feel better. It’s nice, that I could help you. I want to tell, something about me.
I’m 37 years old and have 2 daughters. (Blank) is 4 years and (Blank) is 11 months. I’ve got a boyfriend called (Blank) since 4 years. His son is 10 years old and don’t live with us. (Blank) live with his mother and visits us twice a month. So we are a real patch-work family. I work as a coach for womens gymnastics. I hope you’ll keep on writing about your healthness. Best wishes to you and your family,
Sincerely yours,
(Blank)
Sorry for this simple translation!

That is the whole letter, spelling and grammer issues included. Obviously she doesn’t speak English and it was probably translated for her. None the less, I was very thrilled to finally hear from her after a year and a half and hope that once the 2 years wait is over that she will be willing to identify herself (She can still chose to remain anonymous) and that we can have some type of normal communication. I am really looking forward to that although I can understand too that she might want to remain anonymous and not feel the need to be involved with my life. Anyway, I wrote back to her in her native tongue. I wanted to bring a letter to Dana-Farber yesterday and give it to the person who is in charge of this program. I thought it would be cool (and easier for her to read) if I wrote in German. So as I am writing a letter which I was praying someone could translate into German for me at Alysia’s Hockey practice, the lady sitting next to me asks what I’m doing. I told her the story (the abridged version) and it turns out that she speaks and writes fluent German. She visits every other year and speaks weekly to her friends in Germany. (Am I on Candid Camera?) I write a letter really quickly and in 5 minutes, she has the whole thing translated! I have to thank Jo for rescuing me and helping me with this plan. Rest assured that she is my contact now and hopefully will be able to translate back from German to English as soon as I hear from my donor! What a story…who would have ever believed the odds of that happening! The minute I hear something back, I will let everybody know. Stay tuned.
Next appointment in Boston is October 19. I have to get a bunch more bloodwork and some more immunizations (my 2 year old vaccines). I’ll be posting a whole lot sooner than that! Thank you all once again for following the saga. Many thanks again for your support and remember to support a candidate who supports Stem Cell research since you never know when something like this can happen and a cure can be so close if scientists can be allowed to work. (sorry for the politics but I could go on forever on this subject) Love to All,
Spin

Tuesday, August 26, 2003 9:06 PM CDT

Day 361
Wow!! Almost a year has gone by (just 4 days short and counting) for the big birthday. I would like to say that time has flown by but that really isn’t the case. Although I have developed quite a few skills by laying around the house for the last 10 months (like being incredibly accurate with The Price Is Right’s Final Showcases) it wasn’t the vacation or semi-retirement I had ever hoped for. The story seems to have evolved with a happy ending. My doctor visit went well today and we discussed long and short-term prognosis. I have half a dozen issues to be cautious about for the short term (6 months to 2 years) such as shingles, lung infections, some foods, another low antigen level indicator, very high cholesterol and sunlight. (Yup, still supposed to stay away from those evil rays of sun) These all seem to be manageable and shouldn’t cause any great difficulties. The long-term discussion was about the chances of relapse or other cancers that I might be more prone to being afflicted with. I had heard and read (and repeated on this web-site) that I was at a 40% greater risk of contracting another type of cancer due to the extensive radiation and chemotherapy that I have received. Alas the information reflects a 40% increase in the likelihood verses the general population who has not had previous cancer. He said that in his many years he has only a handful of patients who were diagnosed with other cancers after a bone marrow transplant. Dr. Antin explained that for example 1 out of a thousand people might develop cancer in their lifetime, my risk post-transplant, now become 1.4 out of a thousand. The 40% increase is not specific to me but in comparison to the general population. That was a huge news flash since I had this horrible picture in my mind since the day I heard these odds. Dr. Antin told me that I’ve got a better chance of getting run over by a car leaving the hospital, than getting another type of cancer again. The need for the excruciatingly painful bone marrow biopsy is not needed since I am not exhibiting any signs of the original cancer (Myelodysplasia). It pretty much answers the question people ask, “Are you cured?” Well, they haven’t done a test to find that out, but they don’t feel the need to either! (It’s like, do you do an angiagram on a patient who doesn’t show any signs of heart disease?)
Dr. Antin said I could toss my mask (which I still wore in the hospital) in the trash. He wants me to get back into the general population of germ carrying people right away. He said that I could go to a restaurant, grocery store and even back to work. (Little does he know that IÂ’ve been in grocery stores and restaurants for the past month). He discontinued the last of my medications and told me to just stick with a vitamin a day. The two last medicines I was taking prevent lung infections and viral (like latent chicken pox) infections so thatÂ’s one of the things I need to be cautious about in the short term. He also said that he would allow me to go back to work as soon as I feel ready. He suggested a slightly easier schedule than the 70 hours or so I was working before I was hospitalized. We are thinking about 30 hours a week for a month and then back to full-time. My boss Ericka, whom I spoke with last week, said she was willing to accommodate me anyway she could. Just to let everyone know, CVS and Ericka treated me great while I was sick and it really was a relief to know that my job was still waiting for me when I got better. (The COBRA plan is another story but thatÂ’s not ErickaÂ’s fault) Many thanks to her and CVS for the support (and all the medicine I bought from them).
Lish and Lori were both excited about the visit and the happy ending that we all shared. Toni Dubeau (my case manager nurse) and Lori cried a bit together at this milestone.
It was really gratifying after hearing the stories of other patients, wondering about the odds, watching my neighbors on my floor in the hospital die and wondering why I got this disease, to close a big chapter in this saga. I know that there are people who take this as a sign to begin a new life, climb Mount Everest or move to an island in the Caribbean (not a bad idea) but I have pretty much chosen the same path to continue. Take care of my wife and daughter the best I can. Treat my friends and family like I would like to be treated. Show compassion to those who need it and help whoever I can, no matter the time or cost. Thank God for the miracle he performed, whether it was his divine hand who has guided the science of the doctors, nurses and my donor or some Master Plan for all his creatures. I guess itÂ’s a good set of rules to live by, my Mom & Dad taught it to me for many years and it seems to have worked so far. Maybe thatÂ’s why God decided to let me continueÂ…tell the story that hope that love and hope prevailed, against the odds and against the evil.

Monday, July 21, 2003 7:42 PM CDT

Day 324
I forgot to make my journal entry after last weeks visit to Dana-Farber. Sorry about the delay but fortunately there is only positive news to report. My levels were good, Lori somehow lost the bloodwork report (If you need to lose anything, feel free to give her a call) but I remember that red and platelets were good, both above minimum levels and whites had dropped a bit down to 3.8 but he told me not too worry. Dr. Antin took me off the last of my immunosuppression medications. Those are the drugs that prevent the dreaded Graft v. Host disease but also suppress your regular blood levels. He said my next test should show much better results. Also they measured my IGG level (immunoglobulin) which is a key antigen for fighting infection. It had gone up to 613, which is well above the level they look for to stay healthy (all other things being equal). The things that I must look out for now is G v. H since I’m off the medication and staying free of colds, coughs and infections. I’m still supposed to be very careful about public places but use good judgment in crowded areas. I got the impression that I am supposed to get a little more exposure but he wouldn’t really commit. Toni gave me a little more leeway to take some risks although she will deny ever saying it. (I hope she doesn’t read my web-site) The really great news is that I don’t have another appointment with Dr. Antin until the end of August (26th) and then I will start with some of my childhood vaccinations. After that he said he would clear me to start work. He cautioned about staying clean and easing into it at first since we are trying to slowly build up immunity. I was just excited to hear that I can resume a normal (semi-normal) life once again. I know that I’ve said thank you before to a lot of people but really the support to get me through this horrible episode goes to my friends, family and God. There were so many prayers and people who convinced me that there was no other option except getting better that it left me little time to ponder the alternative. Keeping my little mind busy with positive thoughts and support made a difference and you can look at the mirror and say to yourself, “something I did helped someone I know fight for his life and WIN!!”
While I’m on the subject of pontification, I would like to remind everyone to donate blood every few months if they are able. I gave blood before this and was almost at the 10-gallon level. I was also on the National Marrow Registry after a drive a few years ago at the Police station in Manchester. Anyway, I’m not sure if everyone knows how much donated blood I have received in the months leading up to the transplant and for the month afterward. Conservatively, I used 30 or so pints of donated blood. Many days before my transplant as it was hard just to stay upright. I’d get a pint or two in the morning and spend the day at work. After the transplant, I needed blood every other day until my body started producing enough on its own. There are plenty of people who need blood (and marrow) desperately so whenever there is a bloodmobile around (especially in the summer months when there is a shortage of donors) please give a pint!!!
That’s all on that subject. I know that everyone will do the right thing, you don’t have answer to me, you answer to God. (Great Jewish guilt trip, huh?)
Thanks to all those famous (infamous) people who have posted on my Guestbook page and just be sure that we keep in civilized or they will erase this whole mess (and then were will my legacy go??). Love and Kisses to all..(Just kisses go to the girls!!)
Spin

Thursday, June 12, 2003 12:03 AM CDT

Day 286
Hello again everybody! I back from my monthly checkup at Dana Farber in Boston yesterday afternoon. I got improved results again for my blood work with all groups slowly trending upward. My white count improved to 4.5 (up from 4.1) Red Blood cells went up to 4.47 (from 4.25) and platelet stayed the same at 173. Overall the counts showed good steady progress and Dr. Antin was pleased with the results. He took me off of one of my immunosuppresants and told me to stop taking the folic acid. This reduces my pill intake by 3 a day so now I’m down to only 6 pills a day. Big improvement from the 30 a day I was taking when I first got home in September. Dr. Antin said that next month I will stop taking the other immunosuppresant and we will watch carefully for any signs between now and then for GVH (graft v. host disease). The GVH can flare up after these medications stop and they can result in some serious complications. Most often they don’t and they aren’t expecting any problems but I need to watch closely just in case.

My immunizations will begin at 12 months, 14 months and 24 months. By the time I get my first vaccination at about one year from my transplant, I should be cleared to go back to work. I can’t wait since sitting around the house is driving me crazy. By the way, my weight was up to 132 lbs. and I’ve been eating really good lately.

Lori is scheduled for her neck surgery on June 23rd. She is having a herniated disk fixed and will be out of commission for a while. We’ve got most of the chores split up between me and Alysia but mowing the lawn might be a battle. I certainly can’t do it and she has trouble with it. Oh well, if that turns out to be our biggest problem I think we’ll be okay. Lish also has only two days of school left and then she’ll be a freshman in high school next year. Talk about not being ready for it. Her cousin Keren has been visiting for the past few weeks (from Israel via Maine) and we’ve had a blast. She’s going home Sunday and at some point we will send Lish to Maine so she can be with her for a while this summer. That’s about all from here. It’ll probably be another two weeks before I post unless something exciting happens. Stay tuned!

Sunday, June 1, 2003 3:08 PM CDT

Day 275
Hi everybody! I didn’t even realize it was so long between postings. Time has flown by this month on my long road to recovery. Good news (or no news) on the health front. I am feeling fine and don’t seem to be experiencing any problems. My weight has been pretty stable at about 130 and I am eating almost everything that they allow me too. My taste buds seem to be all recovered, I can taste coffee, chocolate and other goodies that tasted like poison just a few months ago. Most of the stomach issues seem to be passing as well, the gas and cramps are mostly over and my appetite can be voracious at times. My hair seems to be fully grown back, my body hair is still quite sparse but I heard that chicks don’t like hairy guys anymore so I may be in luck! My next appointment at the clinic in June 11 and I am supposed to have some of the immunosuppression medication reduced again. I am down to about 15 pills a day which is major progress from the 30 or so I was taking just a few months ago. We are supposed to make a plan for immunizations and vaccinations at this next appointment too. After those are done and if I have no adverse reactions, we start planning for a return to work! (Yipee)
Things around the house are as crazy as ever. Last night Lish had a sleepover for 5 girls and they were up pretty late. Lori went to work at 11pm but the house didn’t burn down, I think they might have behaved. Lish got a paper route for the Journal Inquirer in the afternoons. She is delivering 31 houses daily since she wants some spending money. So far I only had to cover for her once. It only takes about 15 minutes on the electric scooter and then she can spend her hard earned money at the mall. Lori is still scheduled for surgery on June 23 for her neck. She’ll be in the hospital for a day and a few weeks to recover. She’s a little nervous but happy about the prospects of pain relief after the operation is done.
That’s about all the exciting news from here. Nice to see that the Red Sox again have started to collapse the second they reached first place. Maybe we can take in a Red Sox game on our next trip to Boston (I’m sure the doctor would kill me if I did). Take care and stay tuned for a posting after my visit on the 11th.

Wednesday, May 7, 2003 7:28 PM CDT

Day 250
Fresh from another visit to Boston I can report some good news on the road to my recovery and resumption of a normal life. My white blood cell count is the highest it has even been, 4.1 (acceptable range 4.0 to 11.0) and that is a great sign. We are attributing this to the drop in immunosuppresents that I am taking. Last month my dosage was cut in half so my blood cell production was supposed to go up, which it did. We had to watch carefully for any signs of GVHD, which there were none. So Dr. Anton was very pleased with this result and so was I. Other counts which were red, down a fraction but still within acceptable levels and platelets were at 173, again down slightly but no cause for concern. My weight was a plumpy 131 which shows that I am eating, just no sushi yet. (actually raw oysters and sushi he wants me to wait 2 years before I eat).
We discussed a plan for the next several months of visits. Next month he will stop one of my immunosuppresents and we will think of starting my regimen of vaccinations that I will need. One of the things that occurs after a BMT is that since your immune system was totally wiped out by chemo and radiation, all the childhood vaccinations are no longer active. I must get shots again for all those things they gave me as a child like, polio, measles, mumps, chicken pox, etc. It’s really not so bad since I’m so used to getting stuck with needles anyway. I’m still going to be stuck inside for a few more months, I tried to get Dr. Antin to ease me into public life but he said that late August or early September would be the earliest, bummer! I do think I will sneak up to Maine for the family picnic in August and as long as nobody gives me SARS I’ll be okay.
Home life is normal, Lori has been working a lot for the last couple of weeks and Lish is still busy with school and ice hockey. Since Lori has been working at Stop & Shop I just want everybody to know about their Jimmy Fund program with the Dana-Farber cancer center in Boston. Whenever you go to Stop & Shop the cashier is supposed to ask you if you want to buy a scratch ticket ($1.00) to help the Jimmy Fund. You automatically win a great food product (which if you don’t want you can always donate to a food bank) and a chance to win a gift card. But the money they raise goes to the pediatric brain tumor unit which is a cause that deserves your extra dollar. I walked through that floor today on my way to my clinic appointment and saw little bald kids laughing and playing and it breaks my heart to know that the battle for life that they are fighting just isn’t fair for any kid to face. Please donate the dollar when you have the chance.
Thanks for stopping by my site and stay tuned!

Wednesday, April 30, 2003 7:59 PM CDT

Wow, What exciting and titilating dialogue on the guestbook. If I didn't know better I would think I was viewing the script for Bill Maher's 'Politically Incorrect' show or whatever he calls it now. Glad to see that people are still making sense on that page.
Everything here at the Zucker ranch is normal. (Not normal for most families, but normal here) I've been feeling good and have been outside a lot now that the weather is warm. Lish and I have been playing some street hockey (I don't skate so she makes me run) and that has been pretty good exercise. I'm taking a few less pills than last month and my stomach has calmed down a bit from that. Lot's less gas and gurgleing. We have another week to go for a review up in Boston. If I look and feel as good as I should I'll probably get a good report. Lish is back home after a week at Terri and Dave's. She got over her cold and stayed an extra day since they treat her so good. I'm think of sending her to camp for the summer (at their house)!
Nothing else exciting so I will let everyone know what happens after next week's appointment. Ta-Ta for now.

Wednesday, April 9, 2003 5:55 PM CDT

Day 221
Hello Yankee fans and welcome to another addition of ‘Sportstalk”. Just kidding, glad to see the Yanks are still ahead of the Sox..Very glad to see UCONN Husky girls winning the National Championship. Anyway, I got the results from my IGG bloodwork today in an email from Toni. She said that my count was 449, which is well ahead of the 334 that I had last month. (300 was critical level) She said that we will hold off on any infusion therapy since it might appear that my body is beginning to produce enough of this antibody on its own. One more month will give us a better indication of a trend with this level.
Lish was kicked out of the house this morning since she woke up sneezing, coughing and complaining of a scratchy throat. She will be residing at Terri and Dave’s house until further notice. I cheated bad yesterday and went to NYC to see the play-staged reading that she performed in. It was really great! It lasted about an hour and Lish was the lead character. There were 10 other people in the play and about 100 people attended. It was a dialogue play about teen/preteen relationships and family issues. It was funny and people seemed to enjoy it. Lish’s agent was there and I went with Mom and Mimi Kalman. I did get a lot of funny looks with my cheap Michael Jackson look….
My brother and Ariela are coming down from Maine this weekend with the kids (who aren’t in Israel) to help Mom celebrate her 80th B-Day. (April 10) He finally found a house and will be moving in next week. We will load him up on Passover goodies when he gets here since who knows what they have up in Maine. When he was in Idaho he couldn’t even find motzah!
That’s about all the good news for now. My next check up is early May unless I come down with Lish’s cold. Hopefully kicking her out this time will prevent me from getting sick.

Wednesday, April 2, 2003 6:50 PM CST

Day 214
Hi everybody! Fresh back from a trip to Boston’s world famous Dana-Farber Cancer Center, here’s today’s report: White count is 3.4, which I’m pretty sure is up from last report in early March. My hemocrit level is 39.5 which is better than last time and only a few points off the minimum ‘normal’ levels. Platelet level is 187 which I think was about similar to last time. Platelet ‘normal’ range is 150 – 400 so it’s been a few months now that it has been in the safe range. I haven’t had any bruising lately so that indicates I’m able to heal and clot. (something I missed before) My neutrophils (the good white cells that fight infection) are 55% which Dr. Antin said is a good rate and encouraging. My weight was good at 125lbs and thankfully I didn’t have to see the nutritionist, she always beats me up about my eating habits. I told her before that I’m not gonna get much bigger than 135lbs. Never have, never will!
Of course every trip seems to be punctuated with some caveat or warning and this trip is no different. First Toni, my BMT nurse had a long talk with me about being too anxious and taking too many chances. She told me that she looses too many patients who are 6 to 12 months out because they take chances like go out, visit places and get exposed (inadvertently) to germs. She explained that right now, if I were an AIDS patients with the same counts that I have now, I’d be so critical that I could be planning my funeral. The difference is that my counts are slowly heading up while theirs would be slowly heading down. She told me that I am still way too susceptible to so many things that can go wrong that, even though I feel good, I need to curb my desire to socialize. She started to cry and hugged me. She told me that I was one of her favorite patients and she didn’t want to lose me. I felt awful but told her it wasn’t very good for her job security to lose any patients, she probably says the same thing to everyone! We had a good laugh.
The other issue Dr. Antin raised with me is my IGG or Immunoglobulin level. Although he won’t have today’s blood test results back for another day or so, he is pretty sure that I may have to begin IV therapy to restore this part of my plasma that protects me against viral infections. It involves a couple of times a month of a few hours receiving some kind of replacement therapy until my body starts making this on it’s own. (If it ever does, I’m not sure how it works) I haven’t done enough research on this subject yet, but I will probably research it on the Web and will become an expert shortly. He said he would be able to arrange the IV locally at Dr. Posteraro’s office at the Manchester Cancer Center so I won’t have to drive to Boston. That’ll be nice, not that I mind Boston, it’s just having to drive past Fenway Park makes me feel sick. (Hahahaha) Yanks Rule!!
Oh, by the way, I will cheat death again next week for Lish’s Broadway reading. Tickets are going fast (they’re free so what nice Jewish relatives wouldn’t snap them up?) Call me if you want to go. I will post more information about the IGG situation when I hear from the doctor.

Friday, March 28, 2003 3:36 PM CST

Day 209
Hi everybody! Now that I’m well into my 200’s I figured it was time for another posting. It’s not that I’m not near the computer 10 times a day to write a posting, I just figure that nobody wants to be bored with what little information I am able to provide. I’m feeling great this last week, no congestion or cough. I did go to Mom’s and supervise the movers yesterday. I helped Mom move a few pieces of furniture and I knew that I was still out of shape. I was pretty tired when I got home. I know that I’m supposed to take it easy, but I get a little anxious and want to do stuff. I wore my mask and gloves to keep the germs away, I looked a little goofy by I’m still healthy.
Wednesday is my monthly checkup in Boston. I am concerned about the immunoglobulin issue and really don’t know a lot about it (except what I read on the internet). Since on my last visit the doctor didn’t have the blood work back from the lab he didn’t know to explain what was going on. Now I’ll get the whole scoop and pass it on to everybody next week in terms I hope all will understand. (especially me)
Lori and Lish are good. Lish is studying her script daily for her play next week on Broadway (actually the Producers Club on W.44th and Broadway) The play is on Mon. April 7 and Tues. April 8 at 7pm. (it’s about an hour) If anyone is interested in going (it’s free) please RSVP to me on my email ASAP so I can let them know. She is one of the main characters in the play. (it’s a reading, not really a play) I am definitely going to cheat and head to New York to see it, mask and all! I just hope the NYPD doesn’t think I’m a terrorist or something.
That’s about it from here. I will post next week after my appointment and let everyone know what’s happening. Enjoy the spring!!!

Sunday, March 16, 2003 9:10 PM CST

Day 191
Hi everybody. I’m feeling the pressure. Got a lot of feedback and phone calls regarding my posting and why it hasn’t been up here weekly. Fortunately I’ve not had to post any bad news, no hospitalizations or feeling ill. There is virtually no cough left from that cold last month and although it took a month, I’m over it. Hopefully my blood counts will start rising now. I have another two weeks to my next appointment in Boston and we’ll see about my immunoglobulin level and blood counts. The doctor did reduce one of my immunosupresion drugs on the last visit and he said that the less medication I take, the higher my counts should be.

Weather here was great today and Lish and I walked around the block. I have been doing the treadmill everyday lately and am up to 20 to 25 minutes daily. I didn’t use it today since after my walk I have had lots of gas (you know, farts) and I just felt like sitting instead of walking. The gas thing has been going on ever since I got home from the hospital. I’ve taken anti-gas medicine, stopped dairy products and tried yogurt too but I can’t seem to get rid of the constant gas. Anybody got suggestions?

Lish is going to do an off-broadway play/reading on April 6 & 7 in New York. She was cast as the lead character last year as Maudie, a story about school pressures and growing up. It was a 1 day thing last year, but this year the producer is showing it to directors, finance and production people to try and make it a big deal. Lish is pretty excited about it and says if anyone is interested in going either night, we can arrange it.

That’s about all from here. I will try to let only a week pass before I post next time. Just remember that if there is no bad news here, that’s good news!

Tuesday, March 4, 2003 7:43 PM CST

Day 185 (I gotta check a calander)
I'm roughly halfway through the year now, so I'm celebrating my 6 month birthday. I'm not sure if the people at Dana-Farber were serious when they said bone marrow transplant patients don't use their original birthdays anymore. Once they get a transplant they have a new birthday. Either way, I guess I can celebrate two different dates!
I'm back today from my monthly checkup in Boston. I've felt great for the last week or so and except for a little cough I'm over the cold. My blood counts in the White catagory dropped a lot to 2.8 The doctor thinks that is because I'm getting over the cold. (I don't understand since 2 weeks ago they were 3.9 and I was a lot sicker) My red levels were the same and platelets were 190 which is a good number. At least those are staying high.
Again an area of concern is my immunaglobin(IGG)level. My case nurse emailed me after my visit to say that my level is very low and is boarderline for replacement. I don't know yet what that entails, but she did say that my low level makes me succeptable to more infections. I will ask her about it and of course do some research on the net. Apparently its not an overly urgent situation since she said that they will monitor my level for another month first.
Good news is that I had to clip some hair off the top before the trip. I've got a lot growing in and although it doesn't resemble my pre-transplant head, the hair is definately coming back. It is way more grey than before so I'm looking a little older. Lish says I should shave back to bald since I looked so much younger that way. Any suggestions? (Fisher)
That's about all the update I can handle. I will fill in more info about the IGG when I get it. Thanks for staying tuned in.

Tuesday, February 25, 2003 12:42 AM CST

Day 175 (approx)
I know it has been a few weeks since I have posted on my site here but I am having severe computer problems. My desktop has been down for over a week, I can only boot up in safe mode so I can’t use any periferals like the modem or printer. I am currently using Lish’s antique laptop which takes forever to internet connect and download. Plus it freezes up on me on my AOL so it’s been a little frustrating.
I am getting better from that cold/virus that I had. I visited Dr. Posteraro (oncologist) last Wed. and he said it will just take a few more weeks to shake the cough. He stopped the antibiotics since he thinks it was a virus and the antibiotics don’t do much against that. All the blood cultures that were taken came out negative so there was no infection. My levels (according to his machine) were great. I was at 3.9 for white count and 213 for platelets, both all-time records! He also said that the white cells called neutrofills (which are the ones which fight infections) are rising a lot too and that was a good sign. He said there was no need to follow up with him unless I get a fever and don’t want to go to the ER or Boston. I think that’s a great idea since he treated me great and I was happy with the results. I do have a monthly follow up in Boston next Tuesday so I will post after that.
Right now I am writing on Lotus (which I never used before) so I am praying I am able to post this entry. Hope to have everything back and running in a few days so I can stay in touch!

Thursday, February 13, 2003 2:18 PM CST

Day 166
Well, a little news since last Tuesday’s posting. Starting the next day from getting back from Boston, I started getting a little cough and runny nose. Lish was still stuck at home since she had a fever and bad cough but we kept her in her room so she wouldn’t spread any germs. I guess that wasn’t enough since by Thursday I had a fever and wasn’t getting much better. I had a little trouble hooking up with Boston so I called Dr. Posteraro (my local oncologist). He told me to wait the weekend unless the fever got real high and I had some real anxiety about going to any hospital on a Friday afternoon (in a blizzard). I felt really crappy all weekend and my temperature fluctuated from normal to 102.5. Monday afternoon Boston called to check on me and said that I should come up first thing on Tuesday to see the doctor and run some tests. Then at 4:30 they call back and tell me to head directly for my local emergency room.

I went to Manchester Hospital with Lori and there were about 100 people in the lobby. The triage nurse was great and put me in an isolation room right away (it was the psycho room but I didn’t care). I was seen rather quickly by a doctor who seemed to listen to the problem and was anxious to begin treatment. She said she would call my doctor in Boston and get feedback from him. After about 2 hours she said that he didn’t call back so she spoke to Dr. Posteraro in Manchester. He said to start me on IV antibiotics and send me home and he would follow up Tuesday with an office visit. By the time they gave me the antibiotics and sent me home it was 5AM. I had my follow up visit Tuesday and Dr. Posteraro thinks that it some type of viral infection and antibiotics won’t do much. He did prescribe a weeks worth of Levocor since my white count had dropped so low that he was concerned for other general infections. My white cell count dropped from 3.6 (last week) to 2.0 on Monday. Platelets also dropped again, I’m down to 115. I haven’t been setback so many times since my card games in High school. Today I am clearing up a little, less coughing and no fever. I visit Dr. P again on Tuesday to see how well my blood and me are progressing. I will let you know whatever the counts are as soon as I know them.

Of course I stopped exercising since I was hacking my lungs out. I stopped eating as much as I was too. The scale reflected that this morning, I’m down to about 117lbs. Seems like I dropped about 10 lbs. in a week. Now I have some goals to shoot for, I’m just hoping that it doesn’t take another 4 months to gain those 10lbs back! That’s about all the tidbits for today, hope everybody has a great Valentine’s Day.

Tueday, February 4, 2003 9:44 PM CST

Day 157
Well it was nice to take a trip to Boston today and get some nice counts back. My white count has risen to 3.9, well above any level I have had in the past. Between 4 and 10 are considered normal so it appears I’m right on the borderline of being ‘normal’ (which I don’t think I’ve ever been). Red count was almost identical to January’s count but Dr. Antin said not too worry as long as it doesn’t trend downward. Platelets jumped to 171 which is also around ‘normal’ counts. My blood counts have started (finally) to rise to normal levels and it’s quite a relief. The only bad thing is that one of my blood tests revealed that the whites that I am producing are not producing the proportionate amount of antibodies they expect. Therefore my immune system is still very weak. He is concerned enough about the count that we discussed some intravenous treatment called immuglobin (spelling may be wrong) that may help to bring up or restore enough antibodies until I start producing the needed amount. We will wait for my next round of blood tests at clinic visit in early March. He said as long as I don’t go out or get sick, I don’t have to worry too much about my low level of antibodies.
I finally gained enough weight to make the doctor and the nutritionist happy. I am up to 125 lbs. which is about 10 lbs. off my top weight. The nutritionist could tell I was eating more and she was happy with my exercise routine. I have been walking about 20 to 25 minutes a day at 3.3MPH and now I started doing some arm exercises with a little barbell. I haven’t built up a 6-pack of abs or big biceps yet, but I’m working on it. LOL
Lish has been sick for the last two days and even missed school. She been stuck in her room and can only come out with a surgical mask and gloves. Everybody is washing hands around here like we have OCD. She’s not really heartbroken about missing school but I know she’s going to have lots of catching up to do. Lori picked up some homework at school this afternoon for her and the teacher said that lots of kids are out sick. By the way, she got 3-A’s 3-B’s and 1-C for grades in case anyone is wondering. She gets to live at home (instead of the garage) for another semester.
That’s about it for now. If there is anything else going on, I will probably post again next Tuesday. Thanks again for checking in.

Thursday, January 30, 2003 at 07:52 PM (CST)

Day 145
I think it’s Day 145. I’m upstairs and there isn’t a calendar up here to count the days. It was so much easier to remember which day it was when I was in the hospital and just counting my post-transplant progress. I guess that is a lot of positive progress since I’m not really as focused on counting my days or even freaking out about my blood counts. Since my general health has been good, I seem to be worrying less about those things and worrying more about the future. I still have a long way to go before I’m back in ‘circulation’, but there are days when I’m chewing at the bit.
I have my monthly clinic visit at Dana-Farber coming up on Tuesday 2/4. As always I will report my counts and any news that the doctor gives me. I think my weight has been remaining steady, around 121 or so. I know I’m drinking more liquids and seem to be eating more at each sitting. Lately I’ve even been snacking which is something I hardly ever do. Also the exercise must be helping. Today I did 25 minutes on the treadmill. Mostly at 3mph but for the last 10 minutes I cranked it up. I not exactly running, more like a jog. It certainly has built up a little endurance since I couldn’t manage 10 minutes of walking a month ago.
My hair is filling in a little more. Lori said it looks much more gray than before. It is still very short and no where near what it used to be. I think I need to catch some sun and get some color in my skin. That’s real pale too but I don’t see suntanning weather coming to New England anytime soon.
Lish and Lori are good. Lori’s doctor wants to operate on her ruptured disk soon but she’s got a second opinion coming in Feb. Actually since report cards are supposed to come home tomorrow, Lish might NOT be okay. I’ll let you know…

Wednesday, January 15, 2003 at 07:44 PM (CST)

Day 136
Hi everybody! I hope the once a week updates are not a problem. Since there is not a whole lot of news on the medical front, I really don’t want to bore people with my day to day recovery. They say no news is good news and my week since the doctors visit has been totally uneventful. As for my weight, it is still hovering between 115 and 120lbs. Some days are better than other for eating. My stomach still gurgles all day and gives me that full feeling. That doesn’t give me too much motivation to eat, but I am still doing 3 meals and some snacks here and there. My teeth have felt a little better but it still kills to eat anything with lots of sugar (like chocolate). I visited cousin Donna (my dentist) and her partner said the discomfort is from receding gums around the teeth. She gave me some new floride toothpaste and told me to brush with that and Sensidyne and that should ease the pain.
I actually went out on Tuesday! Lish had a special program at the temple with her Hebrew school class (a mock wedding and she was the bride). I was good and wore my mask and gloves and sat away from everybody else. Of course everyone had to stop by to talk and see how I was doing which made me a little nervous. I think I was okay since no one sneezed on me and I didn’t get any hugs or handshakes. (That would have freaked me out)
I’ve been real good with the treadmill too. I’m up to 15 minutes at 3MPH. I’m not sure if I want to step up which would be better for me. Longer time at 3MPH or crank up the speed and stay at 15 minutes. Can I get some input from some exercise experts? Either way, I know it’s working since I’m winded when I get off the treadmill. I can feel it in my legs and my lungs are getting the workout I know they need.
That’s about it from here. Lori is starting at Stop & Shop next Monday as a cashier. She said she will continue to look for something with better benefits. She won’t be eligible for insurance for 1 year since she’s part-time. She wants to check out the local hospitals, you become eligible for insurance after 30 days and only have to work minimum 20 hours a week. I think the quicker we get insurance the less we will worry about the cost of converting to COBRA. I think I only have a month or two left on my CVS insurance.
Well I’ll talk to you all next Tuesday or so.

Tuesday, January 07, 2003 at 09:20 PM (CST)

Day 129
Today was my long awaited (1 month) clinic visit in Boston. The overall summary from Dr. Antin was that I am making progress albeit slow progress. All my blood counts were down from my previous visit in December. White counts dropped a fraction but HCT and RBC were down about 10%. Platelet went down from 171 to 161 which he said wasn’t a real significant drop. Overall he explained that from one day to the next blood levels will rise and fall. Since this wasn’t a significant drop, he attributes the lower counts to just normal fluctuations. Although I was quite disappointed and concerned since “counts” have always been so important, he reassured me that the overall progress I am experiencing is good. I groveled and begged for him to ease my restrictions on going out in public. He was relentless in insisting on my virtual quarantine until August or so. He said he would never release me in under a year and strongly encouraged me not to disobey his orders. He did acknowledge that I will probably venture out here and there but insisted I use extreme caution.
I am feeling a little better from week to week. I am walking a lot each day on the treadmill and that is building up my leg strength and making my lungs stretch too. I feel like napping the minute I hop off. It’s a real workout even though Belle is still doing 2 to 3 times longer a day at her gym.
That’s about all the exciting news from here. It’s late for me and it was a long day so I’m gonna sign off and crash. I’ll try to further update in the next few days.

Monday, December 30, 2002 at 09:03 PM (CST)

Day 121
Wow, I can’t believe it’s been so long in between postings. I apologize for not keeping everybody current on what has (or hasn’t) been going on. Really, no news has been good news and that basically describes my existence for the last few weeks. I’m still stuck at home and don’t think I’ve been out the door (except for the mailbox) in about two weeks. My weight still hasn’t changed much in the last few weeks. I am trying real hard to eat and drink enough but I’m still hovering between 117 and 120lbs. I’ve got a few teeth that are killing me (one on either side of my mouth) so hot, cold and sweet things are just downright painful to eat. Back in early November I asked the doctor and he said I’d have to wait for 6 month before I should try any dental work. I’m going to ask him next Tuesday if I can see my dentist early and see if I can do anything about the pain. I bet if it wasn’t so painful to eat, I would eat more.
Exercise was a big issue up until last week. The weather has been so cold it was difficult to go outside. Mom’s friend, Joel & Pricilla Levy offered their electric treadmill as long as I need it. I was a super idea and I have been walking up to 20 minutes a day. (at the real slow speed) I am planning to turn up the speed a little next week and maybe start jogging. I think this might be my secret to start putting on some weight and getting into shape. I’m sure it will help build up my appetite too.
Lori and Lish went skiing yesterday and of course left me home. They said that the conditions were as good as they have ever skied on. They went to Sundown for the first time and other than the crowds, said it was pretty good. Lish was looking for a huge mountain and real steep slopes since she is such a fearless daredevil. No such thing lot that in Connecticut, maybe they’ll have to travel to Vermont. I wish I could go, but I know I’m in such bad shape I wouldn’t last 10 minutes. (not to mention all those people and their germs!)
Lori got laid off from her job 3rd shift job at the gas station so now she is unemployed. The owner said overnight business was too slow and he would only stay open on the weekends. He gave that position to a guy who had been there longer than Lori. She’ll start looking a little harder after Lish goes back to school. I told her she needs to find something with insurance since I lose my CVS insurance in another month or so. Then I have to buy COBRA and I know that is going to be real expensive. Keep your eyes open for her..
I promise to update at little more often so everyone won’t be in the dark. Remember, you can always email me if you are curious. I usually check the mail everyday. I have to start clearing all the files off of this laptop and use my desktop upstairs. This awesome laptop was loaned to me for use at the hospital by Kaplan Computers in Manchester, but they called last week and want it back. I hope I get everything off it!
Take care and thanks for tuning in.

Saturday, December 14, 2002 at 07:49 PM (CST)

Day 107
Well today was the big ice skating show at the civic center that Alysia performed in. I did get the luxury skybox tickets and sat up there with Lori and Celo. The view was great although the skaters did look like ants. The whole show was shown on the Jumbotron and also on the TV’s that are hooked up in each of the boxes. That was great since we got a lot of good close ups of the kids and professionals skating. Lish did a great job and I was so proud of her. The show ran from 1pm to about 3pm. The civic center was packed although there seemed to be a few more empty seats than years past. Since everyone was required to bring a new, unwrapped toy with their admission ticket, they obviously gathered a lot of toys for the Toys for Tots program. The official count was 17,949 toys which was a really good number. Lots of people bring more than one toy, it’s always nice to see so many people in the giving and sharing spirit. That was the culmination of about 5 months of practicing for Lish, maybe now she can start doing some schoolwork. :)
I wore my mask and gloves and stayed away from the masses of people and snotty kids. At the end of the show we went down to give Lish a bouquet and there were a few people but we stayed away from them. I did bump into a friend of mine who works for the Wolfpack hockey team (he’s the stuffed mascot who walks around entertaining the kids), he said he was working on skybox tickets for Lish and I to a few upcoming games. Cool.
I am certainly feeling a bit tired today. There was a lot of walking through the civic center, but that was good. My legs feel like they got a good workout. Hopefully I can get outside tomorrow and catch some more fresh air. Of course we got a pizza tonight from Roma’s. It was great, real saucy and hot. We got a large and only ate half so I can freeze the rest and eat it later. Yum.
That’s about it from here, I’ll keep you updated on any new developments a little later this week. By the way, I don’t remember if I mentioned that I don’t have to go to clinic until the first week of January. That’s great for the commuting factor although I still get very nervous about my blood counts. I am very anxious about those and a whole month between checking those counts makes me a little crazy. I guess that’s pretty normal though, I’m just a little more paranoid than most. Talk to you soon.

Thursday, December 12, 2002 at 09:20 PM (CST)

Day 105
Hi everybody! I’m finding it hard to compose a journal entry when nothing exciting is going on. I guess that is a good thing since most news that can happen can’t be good news. The doctor always tells me that steady and boring are the best course for recovering patients. So basically that’s what is going on, steady and boring.
Lori and I went for a walk today to the end of the street. I think it was the first time in about 3 weeks since I’ve done any significant walking. I felt good (and tired) when I was done.
I did good with food today. Dinner was especially good though. Lori made falafel with her own cucumber & dill sauce. Plus she made Israeli cucumber and tomato salad. It was so good! I haven’t had anything that tasted like a trip to Israel in so long. What a treat.
This Saturday is the big ice show, Symphony on Ice, that Lish has been practicing for since September. There was no practice since Monday so the kids can relax until Saturday’s 1pm show. We got a call from one of the show’s organizers and she arranged for two tickets to the show in United Technologies skybox. This will give me tons of isolation from the general population since only a dozen or so people fit into a skybox (like I know since I’m there all the time). The entrance to the skyboxes are on the third floor of the civic center mall so I don’t even have to mill around with the thousands of people in the lobby. Hopefully I don’t sit with anybody whose sick (I’ll ask) and they are nice people. Don’t worry, I’ll wear my mask and gloves the whole time. Celo said he was going to get me a pizza from Roma’s after the show. Hopefully the weather holds out since we are expecting another huge storm on Saturday. I will let you know how it all turns out.
That’s about it from here. I will post another entry Saturday night and give a review of the show!

Saturday, December 07, 2002 at 04:55 PM (CST)

Day 100
Hi everybody! Well it looks like (without counting individual days on the calendar) I’ve hit my 100 day milestone. What do I have planned to celebrate this big day? Well, Lori has been sleeping since she got back from temple this afternoon and Lish is at skating practice until late. Basically I’ve been watching football on TV and reading the paper. Not exactly a high energy day. Nancy R. came over and spent some time with me. It was great to see her and she gives a big shout out to Steve F. Celo, Ron, Dave F, Laurie S, Dan, Dave and a few others I might have forgot. We reminisced about all those USY times. I’m just trying to figure out why she remembers so much more detail than me. (She said to blame it on the transplant, I’m thinking excessive drugs and alcohol)
Speaking of alcohol, I’m hoping Lori wakes up before 8pm. She promised that she would let me drink a beer tonight to celebrate my 100th day. It really doesn’t look like she’s getting up anytime soon and if she does, she’s not going out in 10 degree weather to buy me a beer. Were is the love?
I’m diligently working on eating and trying to gain weight. I ate a ton for dinner last night. (Mom came over and made latkes for last night of Chanukah) I’m definitely a little heavier than my clinic visit weight. I just need some daily exercise to built a little muscle tone and gain a little more weight. Pretty soon I’ll be so buff that the chicks will be going crazy.
Feeling fine otherwise, no congestion and my head hasn’t been stuffy. Still busy taking tons of medication. I’m am finally done with the antibiotic, though. The doctor cut down the dosage of two of my anti-rejection drugs. Instead of taking 4 a day, I’m only taking 3. I still do about 20 or so pills in the morning and then another 15 for the rest of the day. That’s why I can skip meals, I’m so full of pills that I have no room for food. Haha. I got a big reprieve from Dr. Antin on Tuesday. I don’t have to go back to clinic for 4 weeks! Yipee, nice to cut down on trips to the big city. Next trip will be sometime in early January. Talk to you all later.

Wednesday, December 04, 2002 at 12:34 PM (CST)

Day 97
Hi everyone, sorry I didn’t update Tuesday after my clinic visit, but we got back a little late and then I helped Lish with her homework after Hebrew school. My clinic visit was rather complex since I got some good news, but a rather ambiguous prognosis for the next 6 to 9 months. First I’ll give you my blood counts and my doctors’ interpretation of them. My white count is up to 3.0 (from 2.4 two weeks ago). Dr. Antin feels that number is rather low but since I just finished my doses of antibiotics the day before, he thinks the low white might reflect the lingering affects of those medications. Red blood count went from 4.03 to 4.2 (4.5 to 6.4 is normal, so that number is getting better). HCT count went from 35.3 to 37.1. Dr. Antin was very encouraged by that number, explaining that the growth of that number indicates my new marrow is producing healthy red cells. Lastly was my platelet count which was 171. This was double from my visit two weeks ago and the highest number since I was diagnosed with this cancer. Normal platelet levels are considered between 150-450 so my count represents a big step into restoring normal blood counts for all my numbers. That result gave me a big feeling of encouragement.

I had a long talk with my nutritionist who gave us a list of restrictions on food that will now be lifted since I am close to my 100 day birthday. Although I can now eat a bunch more food items, I still must exercise caution and still continue to cook foods to safe temperatures. Some of things I can now eat include: fresh vegetables, bakery products, some deli products, take-out (which she recommends I take home and re-heat) and leftovers. Lori stopped at the grocery store on the way home from clinic and we had a huge salad for dinner. It was the first time since August I had any fresh vegetables and it was delicious. It will be nice to be able to eat some normal foods for a change.

The other issues I discussed with Dr. Antin was what other restrictions can be lifted now that I’m at 100 days. I got back a rather pessimistic view of what I will be able to do in the next few months to a year. He explained that even though my counts are improved, there is still a very small amount of marrow in my body. He estimated that I’m probably only 5 to 15% full of healthy marrow and it will take me 1 to 2 years for my bones to grow enough marrow to fill my bones. I asked him if I could attend Lish’s performance at Symphony on Ice at the Civic Center in a couple of weeks. He emphatically answered that I shouldn’t go anywhere where there are going to be people or germs for a year!!! He reminded me that I seem to be more susceptible to infections than his average patient and I am going to have to take precautions to stay away from a chance of getting sick. That was news I wasn’t really expecting and certainly a disappointment for following a path of getting on my feet and back into circulation (and work) by the spring. I asked him if he would consider me “cured’ of my cancer since my counts were getting better. His reply was that he doesn’t consider his patients “cured”, but only in remission. He said I seem to be in remission, but since this disease can return without much warning, he would not consider me “cured”. He also reminded me that the chances of getting another type of cancer is greatly increased from all the radiation and chemo I got to successfully do the bone marrow transplant procedure. So as a result, I have to keep an eye on my health for a real long time. That’s enough news to keep me depressed for a few days.

That’s the news that got me bummed out. I guess with every step forward, there are set-backs that must be faced too. I will continue to be optimistic, exercise, and look forward to being able to step into normal living again.

Monday, December 02, 2002 at 06:36 PM (CST)

Day 95
Wow, I’m really getting close to Day 100! I’m excited that I’ve reached this milestone which indicates some type of recovery, I wonder what changes in my lifestyle will actually occur. Tomorrow is clinic day in Boston and there are a few questions I am planning to ask. Certainly the food questions are foremost on my mind in addition to the ability to start interacting with people and get out of the house once and a while. While I realize that time is my friend in this process, the doctor has previously told me that a non-related transplant has the longest recovery period (especially since I’ve has a set back or two), so on one hand I’m excited and impatient, but also I realize that I must be patient and not pose any risk by rushing my recovery. What a lot of stuff to worry about! No wonder I can’t sleep at night.
I will write an entry tomorrow after my clinic visit so everyone can catch up on my blood counts. I know the weight issue will be brought up. I feel better and I seem like I’m eating more but the scale at home doesn’t seem to be moving. I know I’ll get yelled at if I only weigh 122lbs when I’m there tomorrow, oh well.
That’s about it for today, I’ll let you know how the drive to Boston was in the snow. (If it’s still snowing, yeech, I hate this weather.

Wednesday, November 27, 2002 at 09:12 PM (CST)

Day 90
Well today is the aftermath of the surprise snowstorm here in southern New England. We got about 8 inches of snow here, but it seems like it all fell overnight. Lori called me from work at about 2AM to tell me that the snow was starting. I jumped out of my skin when the phone rang that early. (With as wrinkly as my skin is now, I could use another coating of flesh) By the time I got out of bed at 10am the snow had stopped, school was cancelled and Lish was getting ready to go outside. One of our neighbors was nice enough to snowblow the sidewalk and the driveway. Lish went out with the shovel and did some touch up and I went out and watched her for a while. I guess it wasn’t such a bad storm since Lori was out with my car (Her car snapped the clutch cable Tuesday night and was towed to the garage) at the grocery store for Turkey & stuff and CVS for a bunch more medicine since I was running low. My car, of course, ran great. It’s hard to beat a 14 year old Celebrity to death. No one can ever accuse me of driving around in a stylish car.
This was the second Tuesday that I’ve haven’t had to go to clinic in Boston. Although I’m a little apprehensive about not knowing my counts, my doctor must be confident enough to let me skip a week. I’m still trying real hard to eat more and put on some weight, but I don’t feel like I’m having much success. I may have gained a pound, but I really don’t have a very good appetite, even though Lori is usually cooking for me on a regular basis. Tastebuds are still not functioning normal and somedays my stomach spends the whole day rumbling so I am not inclined to eat until it settles. (Which can be all day) I still have about 4 days left of Levequin (antibiotic) and when I’m done with that I am hoping my counts start returning to normal. (Maybe it actually will “cure” whatever sinus discomfort I am still having in the process.) The days when the weather is icky, gives me a wicked ache behind my ears. Maybe I got lucky and inherited that from my donor. (Is that possible?)
I hope everybody will have a great Thanksgiving. Please take a minute on my behalf, to be thankful for whatever friends, family and good health God has blessed you with. Being an optimist, I have always figured that things will turn out great and bad things really wouldn’t affect me. These last several months have clearly shown that anyone, even me, can be touched by this cancer or a wide variety of other afflictions that can seriously screw up life as we would know it. There are really no effective ways to prepare for it, but with the help and prayers of some really great family and friends it can make it easier to get through, knowing I’m not alone.
Thank you all for your prayers and thoughtfulness.

Wednesday, November 20, 2002 at 06:06 PM (CST)

Day 82
Back on the regular computer, I got a mouse to plug in the back so now the computer will boot up and I can read and write my mail. I will have to decide what to do with Lish as appropriate punishment for spilling juice on the mouse pad. You can all benefit from the detail I can give on Tuesdays trip to Boston.
It was another early day since I had the CAT scan of my sinuses scheduled early. They moved it over to Brigham & Womens at 10am so it was an early trip up. The CAT scan went quick and Lori and I walked back over to Dana-Farber for a clinic appointment for 2:00pm. So we had a few more hours to kill in the lobby of Dana-Farber. We ate the tuna sandwiches and chips that Lori packed. It was a nice little picnic except that the cafeteria isn’t too far from the lobby and whatever they had for a lunch special, sure smelled great! It was pretty difficult to eat the sandwiches and drink the soda with the surgical mask on, but in that lobby, I wasn’t alone. There are plenty of other sickies with the same dilemma.
Anyway, to give you an update on the clinic portion of my visit, here’s what is going on. My white count went up .01 to 2.4 which was less then he had expected. My red counts also went up about 10%, RBC was 4.03 and HCT was 35.3, not great but not bad either. Platelets, on the other hand, went all the way up to 81! That is tied for my best platelet count ever! The doctor was quite perplexed since some counts are going up and some aren’t doing much of anything. He attributed it to the set backs that I had and that I am still on antibiotics which may be affecting the production of blood cells. He read the CAT scan but couldn’t determine if there was anything going on behind my ears. He said that there is no congestion behind my nose or in the sinuses in my forehead. So to be safe, we’ve continued to antibiotics for another 10 days. He was happy that I gained 2 pounds and that I am trying to eat regularly. He was happy that I was exercising more and he said I looked a little better this week. He said I could reward myself with a real pizza. Just one day since I’m really not cleared yet to eat that kind of food yet. (I begged if I could add a fresh garden salad, but he told me not to push my luck) I’ve been trying to make a serious effort to eat a little more and not lay around too much. It seems to be paying off. My attitude is better this week and I don’t feel so crappy everyday.
So that appears to be my prognosis for the next week or so. I get to skip next weeks clinic appointment, so I don’t have to go back until December 3rd. That kind of thing scares me a little since I would really like to know my counts on a weekly basis. My two previous times I had an extra week in between clinic visits I ended up getting sick and going into the hospital. This time I’ll try to stay healthy! That’s about all, thanks for keeping up with my Journal.

Tuesday, November 19, 2002 at 06:50 PM (CST)

Day 80
Today is going to be a very abbreviated posting. I will post a full account of what happened at clinic in Boston today, but it will have to get done tomorrow. Right now I'm over at my Mom's using her computer to post this. Lish spilled something on the mousepad on the laptop and I can't get it too work. HELP!!! I'll work on it tomorrow morning or I'll just use the computer in the spare bedroom (with all the dust and stuff).
News from clinic was good, not great. Dr. was happy with eating since I put on a few pounds. My levels haven't gone up much and he is keeping me on antibiotics for another week. That will continue to set back my counts. I will give everyone the full story tomorrow, just wanted to let you know I was still alive and they didn't keep me overnight at the hospital....whoopie
See Ya 'all tomorrow

Saturday, November 16, 2002 at 05:25 PM (CST)

Day 78
Today is one icky Saturday, definitely not a day to go for a walk. It was however, a great day to watch UCONN football shutout Navy. That’s about the most entertaining TV I’ve seen in a while. Lori cleaned most of the house when she got back from work this morning and Lish stayed over a friends house last night.
I’ve had a real good week since Tuesday when I was yelled at by the doctor and nutritionist. I’ve really concentrated on eating well and getting up to snack a few times a day. I’ve started eating salsa and chips, Popsicles and munching on whatever leftovers are in the fridge from the day before. I walked almost everyday this week. Yesterday, since it was so warm, I walked around the block. It was the first time in a month that I tried it and it was exhausting. I got back and napped for a couple of hours. My legs really felt like rubber bands, but it was a good feeling to get that much exercise. I think I’ve put on a few pounds (the scale reads the same weight no matter how much you weigh). It seems there is a correlation to eating more and having more energy (duh?). It what they’ve been bugging me about for weeks. My head is still stuffed up with sinuses or whatever. Today is worse than most days, the pressure behind my ears hurts and my throat is still pretty sore. Tuesday morning they are squeezing me in for a CAT scan at Dana-Farber to check on the sinus issue. I’m still taking on oral antibiotic but that hasn’t provided any relief from the sinus pressure. Hopefully they can find out what the problem is on Tuesday’s clinic visit.
That’s all from here. I’ll let everyone know how Tuesday’s clinic visit goes, unless some more exciting news comes up before than. Thanks for keeping up to date with my journal.

Tuesday, November 12, 2002 at 05:04 PM (CST)

Day 74
I wish I could have had a “spin-cam” attached to me today so you could see what went on at clinic in Boston today. First of all, we got there an hour early since the appointment was at 8am and we were worried that the Boston traffic would slow us down. We left the house at 5:30am and Lish had to get up and get to school by herself. She pulled it off okay and called us before she left the house to catch the bus. Blood work went quickly, but Dr. Antin couldn’t get the results since the system was slow. There was a zillion people there for clinic. He gave me a lecture about eating and staying healthy. He is concerned about my possible sinus infection so he wrote me a script for more antibiotics and scheduled me for a CAT scan of my sinuses on 11/24. That might put this mess to rest if we can pin this problem down. I asked him about the PICK lines in my arm and reminded him that he said he would pull it out since I don’t need anymore IV antibiotics (just pills). He said ‘no problem’ and made me lie down on the table. He took the bandages off my arm and started pulling out the catheter. (its about 18 inches long) After he got halfway done, it got stuck and wouldn’t pull out anymore. He struggled with it for about 10 minutes and then wrapped up what he pulled out and taped it to my arm. He told me that I had a blood clot in my arm and it wouldn’t let the rest of the line come out without tearing the line or loosening the clot. He said the latter was risky since it can travel to lungs or head and cause strokes. He wrote me a script for 5 days worth of shots (I was supposed to administer myself) which would loosen the clots. He said by next Tuesdays clinic my blood should be thin enough to pull the catheter out. He sent Toni in to set up the details. She thought the IV group could pull it out today instead of leaving half of the catheter hanging out. She made some calls for me.
The bad news is that they couldn’t look at it until 1pm and I had to go over to Brigham & Women’s ambulatory surgical group to get it done. This was still 8:30 or so when I got all this information. So that meant I had to hang around and wait for 4 hours. So I did and got up to the surgical department at 1pm. A really nice Physician’s Assistant worked on my arm and messaged the vein and slowly pulled on the catheter. She thought my veins were spasming and there was no clot. It would just take a while to message the vein and pull. It took about a half hour of pulling before it finally popped out and she put a band-aid on my arm and sent me on my way. What an adventure!
Anyway, I finally got my counts from Toni before she sent me over to the surgical unit. My counts improved slightly but they certainly aren’t on any fast track to get better quick. She figured that another week of antibiotics are going to slow the growth of my blood cells, so the overall recovery time is still setback a bit. My white cell count was 2.3 (up from 1.8 last week) and platelets rose to 60 (from 47 last week). My red counts went down slightly, but I don’t have those numbers handy.
So that’s what another week at the clinic brought. Maybe I’ll have a little better luck next week. I’ll give everyone an update in another couple of days. Thanks for stopping by the site.

Friday, November 08, 2002 at 05:40 PM (CST)

Day 70
Well, slowly but surely I am approaching day 100 and I’m wondering, ‘is this how I’m supposed to feel?’ It seemed I was better and more energetic when I got back from the hospital from the transplant in September. A slow recovery has made me feel less energetic than I was when I first came home. The infections I got certainly haven’t helped, I guess I just wasn’t looking forward to a slow recovery since everything else went so smooth. I guess patience has a lots to do with recovery, a characteristic that never was my strong suit.
I actually went for a walk today. It was about 60 degrees outside which hasn’t happened in about a month. Belle took me to the end of the street. I could tell that it was a big effort about halfway through! I need to do more exercising and the trip to the end of the street proved it. Lish and Lori went to New York today for an audition. Lish’s agent called about a Disney cartoon voice and since it’s been months since she’s gone on an audition, Lori and her decided to go early, skip school and still make it back to Hartford for Symphony on Ice practice at 5:30pm. Of course the way Lori drives, there should be no problem getting back and forth to NYC in record time.
Tomorrow is going to be in the mid 60s so I’m going to try a couple of trips around the block. It’s also my last day of I.V. antibiotics. I’m not sure how long we’ll leave the catheter in my arm. My Boston doctor says he’ll pull it out on Tuesday and the visiting nurse company called today to tell me that they will leave it attached for another week. I’ll have to see what happens…

Tuesday, November 05, 2002 at 07:29 PM (CST)

Day 67
Today was a long day, however the trip up to Boston was nice. We had a much later appointment than usual so we didn’t get home until 5pm or so and had to take Lish directly to skating. The results of the clinic visit today were a mixed bag. My blood results weren’t so good, probably as a result of my recent fever and the heavy doses of antibiotics that I am taking. My white count dropped to 1.8 and platelets are down to 47. Dr. Antin regards this as a minor setback but reminds me that these series of ‘minor’ setbacks that I have had begin to slow my general progress of getting better. He said that overall, he was confident that I’m not falling victim to Graft v. Host disease but that the pace of my recovery will take longer than expected (oh yeah). While he couldn’t figure exactly why I’m getting all these infections and fevers, he says that many patients are more susceptible than others to getting sick (I guess one of those people is me). Unless there is a specific source that gets me sick, I could just be picking up a germ here and there which is strong enough to make me sick. Oh well, I guess I’m just lucky.
I did meet with the nutritionalist while I was at the clinic today and got an earful. It looks like I dropped down to about 120lbs and I’m clearly not eating enough to maintain my weight. I told her that combined with my lack of taste buds and the fever and fatigue I’ve experienced the past week or so have cause my weight loss. She was unsympathetic and gave me the lecture about how proper nutrition will help with my recovery. She told the doctor who was concerned enough also about my eating (or lack of) that he wrote me a script for some type of medication that will stimulate my appetite. Now I just have to stimulate myself to get off the couch and make something to eat several more times a day.
So anyway, I’m feeling a little better after being stuffed with all these antibiotics and my fever is below 99 or 100 for a change. I’ve still got to get up early to take the IV but since I’ll be up a little earlier I can squeeze in another meal. Keep you updated in a couple of days.

Monday, November 04, 2002 at 04:46 PM (CST)

Day 66
Just a quick update today to keep everyone informed of my progress. I am at day 3 of doing my ‘at home’ intravenous antibiotics. So far it has been pretty uneventful, Lori or Lish hook up the bag and it flows for about an hour and a half. Then they flush the line with saline and another flush of heparin. It’s not terribly complicated, but they have to make sure they do it correctly to prevent another bacterial infection. So far they’ve done a great job (as far as I can tell). My fever seems to have finally broken yesterday. I finally stayed at 98 to 99 all day. Even today I’ve been at 98.8 all day so I guess the antibiotic are working. I still have a little cough and some head pressure so I’ll find out about that tomorrow. I have my clinic visit tomorrow (and Lish has the day off from school so she’s coming up with us) so maybe I’ll get a good diagnosis of what is going on with me. We’ll probably hit up the voting machine before we go, and we’ll administer the antibiotics via IV before we go. Depending how early we have to be in Boston, we can run the IV in the car and make it a little more efficient. Of course I’m dying to see if the blood counts are ever going to get to a normal level and stay there.
So tomorrows update should be a lot more informative and make sure you stay tuned!

Friday, November 01, 2002 at 08:57 PM (CST)

Day 63
Well listeners (and readers) lots of news from here and most of it not good! Late this afternoon (Friday), I just got back from an extended visit and overnight stay at Manchester Memorial Hospital. Here’s what happened:
All day Halloween I felt like I had the chills and felt like my temperature. It was an effort to get up and watch all the cute costumes from the front window. I didn’t even feel like raiding our stash of Reese’s Peanut Butter cups. I took my temperature several times with my cheap digital thermometer and it came up around 100 most of the day. By 8pm I tried another thermometer and was surprised that it showed 101.8. I knew I was going to be in trouble with results like that. I immediately called my clinic doctor in Boston and he instructed me to call my local physician and tell him which antibiotics they need to get me started on to stop the fever spike and get me started on getting rid of whatever bug I had acquired. (Here’s were the story begins). I called and my local physician wasn’t in, the doctor who was covering for him didn’t feel comfortable treating or seeing me since he wasn’t familiar with me as a patient and really wasn’t an expert with my treatment protocol. He suggested to just go to the emergency room.
I got there at about 10pm and they were very attentive to my special needs. They moved me away from the other patients and put me into an isolated room for examination. I thought things were going well. Then I met with the ER physician and I couldn’t convey the urgency of getting me started on the intravenous antibiotics. I told him to call my Doctor at Dana-Farber and he could clarify the best course of treatment. He continued to wait and just order assorted blood tests and x-rays. By 2am the ER doctor finally started me on one of the antibiotic and then claimed he couldn’t get Dana-Farber to call back. He also said that he didn’t want to contact my local oncologist since it was so late already. He wanted me to just wait there until Dr. Posteraro (my local oncologist) stopped by on his morning rounds. Meanwhile, he gave the second antibiotics (around 4am) and told me to rest. That’s about the time I sent Lori and Lish home. They were a little tired of curling up on the floor trying to catch some sleep. I just laid in the bed trying to get some rest.
Finally, around 9am, Dr. P stopped by and we discussed what was happening and the best course of action. He spent almost an hour in the ER, dropping by to consult with me about what I felt would be the best course of action and setting up some orders. What he decided was that I needed to have a PICC catheter installed into my arm which would run into my chest veins so we could administer the more toxic antibiotics and have a Health Care company do it at home. He warned me that it could take all day to arrange and he was right! By the time they installed the PICC and gave me another dose of the antibiotics it was almost 6pm. That’s when they finally sent me home.
The blood counts I had in the hospital were pretty bad. I dropped in my white cell count to 1.8 and platelets dropped too. I couldn’t get a copy of the print out so I don’t remember what the other counts were, but I remember that they were all low. It looks like I’m starting out again from scratch.
The treatment agenda is going to consist of getting the IV antibiotic twice a day at home (I’ll let you know how that turns out). Obviously my clinic day on Tuesday in Boston will be quite an experience. After a week, I go back to Manchester Hospital and have the PICC line removed and hopefully my “bug” will be dead. The hospital did do several blood cultures and I should get the results back in 48 to 72 hours. The doctor figured that whatever the infection decides to be, the antibiotic should have it conquered by then.
So that’s the scoop for now, I will post again tomorrow and let everyone know what it’s like to administer IV antibiotics in the comfort of your rec room.

Tuesday, October 29, 2002 at 07:08 PM (CST)

Day 60
Usually Tuesday is my clinic day and our required pilgrimage to Boston, but I received a reprieve last week that I might not have mentioned in last week’s posting. Dr. Antin said I could skip my usual clinic visit this week. I really couldn’t tell if he is beginning to space out my clinic visits to every other week or if he just had some meetings and was cutting back on patient visits. Granted, my blood results were a little better and maybe he figured I could hold out a second week. The last few days I have been feeling icky enough to go up to see him, it’s this sinus thing that hasn’t gone away since I was in the hospital at the beginning of the month. I’ve been stuffy and all clogged up behind my eyes and my ears have been plugged up too. Yesterday my head was pounding all day with tons of pressure in my ears. I felt crappy enough to spend most of the day in bed. I walked with Lish when she got home from school, but after freezing my butt off I took a hot shower and spent the rest of the evening in bed. I double checked my temperature since, if I didn’t know better, I had a fever. But I was at 99.8 and they told me not to call unless I was 100.5 or higher. This morning my head felt better and I had a whole lot more energy. I got up, ate breakfast, took all my meds and felt a whole lot better. It was just way too cold to go outside for a walk. I’m just having a hard time adjusting to the temperature, both inside and out. No matter how warm I dress, I can’t seem to get warm and stay warm.
Tonight is another one of those boring nights, watching TV with a few extra blankets on. Lori has been working on Lish’s room so we got Tuna fish sandwiches for dinner. She’s made some really good dinners for a while so I really can’t complain. I did drop a few pounds over the last few days since I haven’t felt good. The scale at home reads 120lbs but I really don’t think I dropped that much. I am getting some hair growth on my face. My upper lip is starting to grow a lot more hairs everyday. I’ve taken to shaving the peach fuzz every other day. Hopefully in another few weeks I’ll grow some hair on my bald dome. That’ll help insulate myself for the long cold winter and I really need that extra insulation.
That’s about all of the exciting news from here. By the way, cousin Bari (Gordon) Schwartz had a baby girl last night. (Sophie Allison) So a big mazal tov goes out to her. I’ll try to update a little more frequently this week since it’ll probably be too cold to go outside. Thanks once again for checking in.

Friday, October 25, 2002 at 08:08 PM (CDT)

Day 57
Today was a nice day and although it’s still freezing cold outside, I managed to walk with Alysia up to the end of the street and back. Tomorrow is supposed to be cold and rainy so maybe I’ll try some inside exercises (like moving frequently from the chair to the couch) My head cold (or sinus congestion or whatever it is) feels a lot better today. Yesterday my head was banging all day and my ears were plugged. I emailed the doctors office to see if I could take Sudafed, but haven’t heard back from him yet. (So much for communicating quickly and efficiently on the internet). Anyway since my head banging is almost all better and I’m just coughing a little, it’ll probably be all better in a few days.
Lori bought me a big fleece hat today. You might think it’s excessive but I’ve really been freezing for the last week or so since the temperature dropped. Not just outside for my walks, but where it gets really cold is in the evening at home. Usually from about 6pm on I shiver no matter what I’m wearing, even if I throw on a few blankets. I get really nervous about the shivering since I worry about my temperature and if I’m getting sick again. This afternoon I put the fleece cap on and I noticed an immediate change in my body heat. I stopped shivering and I’ve been real warm ever since I put it on my bald dome. The baseballs caps just don’t compare, the fleece hat has me roasting! She also bought me Spongebob Squarepants house slippers. They look really cool, but after reading all the bad press about Spongebob’s alternate lifestyle, I’m debating whether I should donate them to some couple who would appreciate them more. (haha)
This weekend should be another exciting weekend watching some football and the end of the World Series. Mom brought me a movie to watch and in addition to the two books she brought from the library. I think I’ll have to skip sleep for a couple of nights in order to get those done so she can return them to the library. I’m glad she took them out in her name (actually I think I was banned for life from Manchester library sometime in the late 70s) Alysia is hot on my trail, she was banned from South Windsor library last year, I think. Those books on Albert Einstein are still in Lori’s car waiting to be returned. She says “don’t worry, I’ll bring them back this week”. Anybody care to bet?
Tomorrow the girls have shul and Lish has a two parties in the evening. Lori has to work again. She had a big argument with her boss about getting every other Saturday night off. She lost the argument and he wrote a schedule for the next 3 weeks with her working Tuesday to Saturday. Guess it doesn’t pay to argue with the boss!
That’s about all the news from here. With the sinus headache gone and the cough almost gone too I’ve just got to keep everything steady and boring. Until next time, thanks for tuning in.

Tuesday, October 22, 2002 at 08:44 PM (CDT)

Day 54
Today is Tuesday and I’m back from my clinic visit at Dana-Farber. Lori and I had a nice ride up the Mass. Pike, the leaves were beautiful and there was no traffic (for a change). I think it’s the only opportunity we had this season to do leaf peeping since just about all the colors are at their peak. The overall summary of the visit was good. Just to recap for those of you who are keeping score, my blood counts were as follows. White count went up to 3.1 from 2.55, (normal is between 4-10) which is a slight increase. Red cells (Hct) went from 32.4 last week to 36.5 this week. (normal is 40-54) and platelets went from 67 all the way to 81! (My best number yet) Again, normal platelet counts are 150 to 450 so there is quite a way to go for all my numbers. Dr. Antin’s take on these numbers were pretty positive. He said to be satisfied with slow steady growth, that for me to reach normal numbers again can take 6 months to a year since the transplant was a ‘non-related’ donor. That always makes the procedure more complicated, recovery time quite longer and the always present concern of rejection. The only negative spot in my exam was a blood test he did for liver function. I am still showing some irregular liver function that he says he must watch closely. The liver problem can come from GVH (graft v. host disease, a type of transplant rejection) or as a result of the bacterial infection for which I was hospitalized last week. He wasn’t sure what the cause was but its just something to keep an eye on. He also said that more exercise is good, suggesting bike riding or something like that. (Yea, right) He also did a blood test for the CMV latent virus that my donor gave me, he should have results by Thursday, but hopefully there won’t be anything there either. I also got a prescription for a sleeping aid. I think that’ll be the magic touch I was looking for so I’m not tossing and turning all night. That will be a big relief if it works.
Everything else is normal here at home. Lish had Symphony on Ice practice tonight so she had to miss Hebrew school. I hate when that happens, but there’s only another 2 months to go before their show. I’ll make sure she doesn’t miss any classes for the second half of the year. Lori had two days off from work so she’s gradually turning into a normal human. When she does 5 overnights in a row like last week it takes a good day or two before she acts human again. Don’t worry, she starts her overnights again tomorrow. That’s about all from here, tomorrow I’m going to start walking more and

Monday, October 21, 2002 at 08:24 PM (CDT)

Day 53
Not a real exciting day here, I has been pretty cold but at least it was sunny. I took a walk with Lori and Lish to the end of the block and back. Today it seemed a little easier to make the trip, my legs weren’t killing me at the end of the journey. I helped Lish with some homework tonight and I’m doing good in everything but Math. I can’t figure out all the x over y stuff. I couldn’t figure it out back in the day either, but Lish said I was doing good in Spanish, English and Social Studies. What a relief!
Tomorrow morning is my clinic day in Boston. I will report tomorrow evening what pearls of wisdom the doctor has to say and how my all important blood counts are doing. Overall I’ve felt well since I left the hospital last week. I am defiantly tired but a lot of that I can attribute a lot of that to not being able to sleep well at night. I am getting a lot of ‘post-transplant’ jitters at night when I have time to ‘think’. I usually fall asleep around 2 or 3 am so that could account why I’m so tired too. The last few days I’ve also had that sinus congestion that I was experiencing while I was in the hospital. The constant drip and coughing has given me a headache that’s lasted all week too. What a mess, if I was a horse, they’d probably shoot me.
So tune in tomorrow for the update from my clinic visit.

Friday, October 18, 2002 at 09:29 PM (CDT)

Day 50
Today is cause for minor celebration! I am officially halfway through my 100 days. Post bone marrow transplant, 100 days is significant to the doctors for several reasons. Most important of course is the fact that if you have managed to live for 100 days post transplant, your odds of having your transplant cure your cancer and run into significantly fewer complications are greatly improved. After 100 days usually the blood counts are sufficient to warrant less patient observation (less doctor visits) and a gradual increase in the activities a patient can now engage in. (Like going out or eating non restricted foods) I can honestly say that I am looking forward to a lot of things that my 100 day birthday will bring to me, but in no way am I rushing it. I learned from last weeks’ hospitalization that my body is still very weak and I am really not able to fight off virus or infection that I can get. The doctor told me that you have to believe that your first year post transplant is almost like an infants first year. There is no immune system development and you must exercise extreme caution not to overdo anything, exercise, exposure to people and eating foods that have risk of bacteria. (Like the recent recall of turkey that had Listeria in it, nice that the company finally recalled it since they’ve been selling it since May and known it was contaminated, even selling it to the federal school lunch program). Sorry for the social commentary, but I just finished the book Fast Food Nation and now I know what huge risk these large processing companies put us at for the sake of avoiding recalls, especially now that I am very susceptible to these food borne illnesses.
Back to more cheerful news, I went for a walk all around the block with Mom this afternoon. I was so tired that I had to tell her to slow down so I could keep up. Mom is almost 80 and I find it pretty pathetic that I can’t keep pace with her walking. She still goes to the gym 3 days a week so I guess that’s why she is in better shape. Lori left to go to work a few minutes ago and Lish is sleeping over at a friends, I’m beginning to think I’m a leper, not a cancer patient. Another night falling asleep to Jay Leno (actually I still can’t sleep well so I usually make it until Conan). Great news from the state of Connecticut, I guess I missed jury duty while I was in the hospital. The sent me a letter today warning of fines and other ‘legal action’ if I don’t send them back an explanation in the next 10 days. I’m wondering if this is a good enough excuse.
Nothing exciting on the agenda for tomorrow again. I’ll sleep, read and watch some TV. I will also finish catching up on emails. That’s about it from freezing cold South Windsor, thanks for keeping up with my reports. Best wishes…

Wednesday, October 16, 2002 at 09:19 PM (CDT)

Day 48
Today was a miserably cold day so I didn’t get to go for a walk. I actually slept a little later than normal since my stomach kept me up late last night. I napped in the afternoon and basically did nothing all day. I read a little bit and watched a bit of TV. I spoke to my BMT nurse in Boston today and confirmed my appointment for next Tuesday. She was glad to hear that I finally got out of the hospital and said it was okay with my primary transplant doctor that I missed yesterdays’ appointment. They were satisfied with my blood work results from Monday. She also reported that my bacteria cultures from Monday were so far negative. That is encouraging and probably means that the infection is gone. I just have to make sure I stay healthy and keep out of the hospital.
Belle came over today to keep me company for a while. I guess that was instead of our daily walk. Tomorrow is supposed to be a bit nicer outside so we’ll do our daily stroll then. That is about all of the news from here today. Lish is at skating practice tonight and has a quite a few dates to practice for the big benefit that she skates in every year, Symphony on Ice. She devotes 2 to 3 days a week to this skating show which is the largest single fundraiser for the ‘Toys for Tots’ program. This is her 5th year in the show, which sells out the Hartford Civic center every Christmas season. I’m so proud of her selfless thinking and her general attitude about helping lose less fortunate. I just wish she had been able to go on the Washington DC trip this week and it wasn’t cancelled. Maybe we’ll get lucky and they’ll try again in the spring.
That’s all from here, I’ll update again on Friday. Thanks once again for tuning in.

Monday, October 14, 2002 at 08:55 PM (CDT)

Day 46
It’s great to report that I’m finally home and away from the lovely Brigham’s Hospital. They released me late this afternoon and after a quick (yeah right) ride home I’m all snuggled in. By the way, for all those people who have asked, Lori has EZ Pass from all her trips to New York. That system is compatible with the Mass Pike and it saves tons of time in line to pay tolls. I’m not sure if it does give you a frequent driver discount, but blowing past all those people waiting in line to pay a toll is worth it.
They took plenty of blood from me today for a couple of reasons. First they want to culture some more blood and see if any other bacterial junk grows. They have done that everyday and so far I have been clean since Thursday. They needed 48 hours of clean cultures to be sure that I am infection free. The rest of the blood for was labs and counts. They took enough so I can avoid going to clinic tomorrow. I was very happy with that since I didn’t feel like spending another 4 hours in the car. They told me (several times) that if I feel sick or have a fever, I better be sure to contact the hospital right away. Although we all got along real well, they don’t want to see me back in the hospital (except for social visits). My counts for anyone who is keeping score: white went up to 2.55. Red counts were well within safe range at 32.4 and my platelets went up to 67 which is almost the highest they have ever been. Of course it didn’t hurt that I got infused with a bag of platelets last week, so they’re really not all mine anyway.
I’m under orders to relax and take it easy. Doing a little bit of exercising is good but I have to hold off on my marathon training for a while longer. (You know how these recovering cancer patients always ‘change their life’ and try climbing Mt. Everest?) I’ll start by walking around the block on nice days and read or watch TV on lousy days.
Lish’s birthday is this Sunday and I think Terri, Lori and Lish are going horseback riding. Dave and I will watch football unless he’s working. Boring is good the doctor keeps telling me and although I am just not used to sitting still or not working it is just something I’m going to have to get used to for a while.
That’s all for now. I’m going to start catching up on emails and guest book entries. Since my spacebar on the laptop is busted it might take a while…..

Sunday, October 13, 2002 at 08:24 PM (CDT)

Day 45
It looks like another disappointing day here in Boston. Just the fact that I’m still here in the hospital in Boston is disappointing enough, but since I’m well enough to go home is the real bummer. Well actually I’m not well enough according to the doctors. This morning they were supposed to give me the good news that I could go(since yesterday they were pretty sure they’d let me go) but instead they found some more of my blood culture samples still have evidence of bacterial infection. Even though I would be going home on one type of antibiotic, the stronger one is available only by IV and they felt I needed the extra day or two of that stronger one. So although they didn’t swear it, they are leaning towards sending me home Monday after a couple more doses. I’m thinking that I might just stay since I probably have to come back here Tuesday for my weekly clinic visit. Just kidding, I’m not staying…..
My day was pretty boring anyway. It was nice that Lori, Lish and Belle visited most of the day. We all watched a little TV and read the newspaper. They watched me eat dinner and then went home. Lish and I raided the galley for some soda and juices. We had to escape out of the pod and walk down the hall. No one noticed I left, maybe I could have been gone for the last couple of days without anyone knowing.
My blood counts have been all over the place since I’ve been here. Today my Whites were 2.14, yesterday they were down to 1.83. The day I came here they were up to 6.0 Platelets have gone down a little, but they infused me this week with platelets in order to pull out the catheter on Thursday. Sometimes the doctor says stuff like ‘whites are high due to your infection’ and another one says ‘white production drops for BMT patients when they have an infection’. Basically, everyone gives you different information and seems to have a different interpretation of whatever test results they are reading. One thing this whole procedure has taught me is that a Bone Marrow Transplant is still new enough that not every variation can be explained and as hard as the doctors try, they are still trying to figure out a way to perfect this whole deal.
Hopefully my next journal entry will be tomorrow and I’ll be typing it from home. I will keep everyone posted.

Friday, October 11, 2002 at 09:21 PM (CDT)

Day 43

After a couple days of encouraging news and with high hopes of leaving the hospital, I was abruptly let down like a ton of bricks. Since I have to complete a course of antibiotics that are available by IV only, they were going to send me home with a PICK (external IV port in my arm), but they need to wait 48hours for all traces of the bacterial infection to disappear. That would make Saturday morning the earliest possible time to install the PICK and send me home. Unfortunately the hospital has no IV nurses that work weekends or holidays that can install it. As a result, I have to stay in the hospital through Monday for the sole purpose of getting 2 bags of IV antibiotics per day. The Doctors were disappointed to break the news to me, but I was even more disappointed. So here I sit for another weekend at 3,000 dollars a night. My insurance company is going to love me. Today was spent meandering around the POD, taking a shower and eating 3 good meals. I finally broke down and bought the extended cablevision for the weekend so I will get more than 4 channels. It will be fun to watch football on Sunday.

My brother is flying out of Boston tomorrow afternoon to head back to Idaho, but he will visit me before he leaves. Lori is coming up in the afternoon (after Temple!!) and promises to bring me my lap top computer. She will come back on Sunday with Alysia and will stay overnight (no school on Monday). So Celo, if Lori has not told you yet, she will be staying with you.

Hopefully I will be able to leave Monday after my second dose. Then I have to be right back up here on Tuesday for my regular visit. I am wondering if the Mass Pike will issue frequent flyer miles… with all of this commuting, it would be nice to pick up a free trip.

Alysia’s class trip to Washington DC was abruptly cancelled this afternoon because of sniper situation, she was scheduled to leave this coming Tuesday. So she will be home next week. She was very bummed because they had been planning this trip for almost a year. There is a chance they might reschedule in March, and I hope they do. It is an invaluable experience that I wouldn’t want her to miss.

If Lori does come up tomorrow, I will be able to return emails (if I have any to return).

Thursday, October 10, 2002 at 10:04 PM (CDT)

Day 41

Whoever thought I would still be in Boston in the hospital? I was hoping to get discharged today, but the Doc said that is not happening. They say I need to take a full course of antibiotics (not just the appetizer size) and go a full 48 hours without a fever!! I had my dose of antibiotics through a catheter in my wrist. We were doing well taking all the IV meds until late afternoon, when the line decided to collapse. Now I am waiting for another IV nurse to install another line for my morning IV's. My nurse told me that it is scheduled between 4am and 7am.(that was the best she could do). Overall, I felt a whole lot better today, my temp never went above 99. I went for a walk on the POD to get some exercise. I also went to the clinic dentist today where they checked to make sure that there were no infections. I ate all 3 meals today, and for dinner I had tenderloin tips which could have been easily confused for Alpo Chunks.

Nori stopped by. It was nice to see her. She caught me up on all the news on the floor, and the good news is that Paul is being discharged this weekend. Nori brought me by 4 sets of scrubs which fit because on this POD, they only give you crotch less johnnies which seem to unsnap or untie at the most inopportune times. She also filled me in on my prognosis a little clearer then the doctors have. She thinks I am looking at another day or two in the hospital. She asked about David, Allen, Lish, Lori, Belle and that weird looking Celo fellow. (creative license)

Unfortunately without a line, I cannot get any good sleep medicine tonight. So I am forced to watch reruns of public TV and whatever is on CBS.

Once again, I do not have computer and will respond to emails upon arriving home!!!

Wednesday, October 09, 2002 at 03:45 PM (CDT)

Hello Everyone,

I am doing much better today. I had a horrible night with chills and fever which got as high as 102. I finally got to sleep at about 4:30am. I was too tired to eat breakfast and didn't really wake up until about 10am..(except for the visits every 5 minutes from the nurses or technicians checking for every concievable thing). My fever finally broke around 11:00 am this morning and I have been feeling much better since then.

The diagnosis seems to be that I had a bacterial infection due to the hickman line in my chest. They took blood cultures and determined that there was an infection there. This afternoon a surgical assistant removed the line. They are giving me IV antibiotics and probably will for the next couple of days until they are sure that the bacteria is dead. I was infused with platelets because my count had dropped to 25 and they felt that I needed more to remove the line (since some bleeding does occure because of the procedure). They don't expect to have to give me any more. My prognosis is after a couple of days of antibiotics I should be able to go home!!! The fever is the biggest concern for the doctors and as long as it does not return, I should be ok to go home.

I am still without my computer and probably will be until the weekend. So, I will respond to emails when I get back.

Tuesday, October 08, 2002 at 07:31 PM (CDT)

For anyone that is keeping updates.. a little setback today. I am currently back in the hospital(Boston). I went for my regular Tuesday Clinic Visit and when the Doctor found out that my temp was 103 last night, he ordered that I get admitted today. With the fever, I had chills, vomitting and a headache. I was up all night and just felt really awful. So they think there is some kind of blood born bacteria that is causing the fever. They took blood cultures and all kinds of samples today to try to identify the source of the fever. If everything goes smoothly and they are able to identify the problem, then cure it with antibiotics, I should only have to stay in the hospital for a few days. I was caught by surprise with todays hospital admission and do not have my computer.. (or a clean pair of underwear either). If this is an extended stay, Lori might bring me the laptop. Until then, this is being remotely transcribed and entered. I will not be able to respond to emails until I get the laptop.

So, I will update as soon as I get word of my progress.

Sunday, October 06, 2002 at 09:23 PM (CDT)

Day 38
I can’t begin to tell you how exciting today has been. I went for 2 walks, one with Belle all around the block and one by myself up and down the street. My legs felt much better today and the walk went easy. Yesterday Lori and I walked about halfway around the block and my thighs were killing me. The key is probably regular exercise, either walking a few times everyday, biking or trying a treadmill. Lori suggested the kind that the ferrets had in the cage so I could generate electricity for the house as a byproduct. I’d feel better if the weather was going to be good so I could spend time biking or something but I know this New England weather can get really crappy.
Lori came home sick from work this morning. When she went to work last night she complained of a sore throat and cough but this morning it was really bad. She spent all day laying on the couch coughing and whining. I fed myself breakfast (cold cereal), lunch (Reese’s Peanut Butter cups, chips, salsa and coke) and dinner (spaghetti). I did manage to take all my medicines so far. If I have to ship Lori off to Terri and Dave’s for a few days, I may be able to be self-sufficient. Ha-Ha Alysia is still over there and I think she’ll be ready to go back to school tomorrow. She’s going to have a lot of studying to do this week to make up for her three sick days.
I’m still feeling good overall, tired by good. I still haven’t been able to gain a single pound yet, I’m a steady 125 or so. I know that my weight gain is important, but food still taste icky and I don’t have a lot of motivation to eat still. They say eventually my appetite will come back so I’ll just wait for that to happen before I end up gaining weight.
That’s about all the update I can give everyone. As they say, ‘No news is good news’. I’ll be sure to post my update Tuesday afternoon since I have another clinic visit in Boston in the morning. I’m also planning on stopping by, if time permits, my old floor to visit my nurses. I haven’t had a chance to personally thank Nori since she was on vacation when I was discharged. I’m also curious to see how my other buddies on the floor made out. I’ll let everyone know how my little ‘reunion’ turns out. Thanks again for tuning in and we’ll see you again on Tuesday!

Friday, October 04, 2002 at 07:34 PM (CDT)

Day 36
Hi everybody! Again I apologize for failing to post anything since Tuesday. I wish I could say that time flew because I was having fun but actually I was pretty bored and just wasn’t motivated enough to sit down and write. A few phone calls from some friends (thanks Al and Ken) and having my Mom yell at me motivated today’s entry. Although nothing real exciting happened today I thought I’d mention that Alysia has been banned from the house for a week by her doctor. She went home early from school on Wednesday due to a hacking cough and temperature. She went to stay at Dave and Terri’s house directly from school and has been laying on their couch and coughing on them and the dogs. Lori took Lish to the doctor this morning and he said that due to my condition she must spend at least a week out of the house. He said she has a bad cold and should get over it in a few days, but needs to stay away from home due to germs which may tend to survive a few extra days. She is bummed about being there and I’m bummed that I’m not going to see her for a few more days. Who else is going to beat me at backgammon?
Dave stopped over this afternoon and we almost finished putting Alysia’s room back together. The waterbed is all reassembled and the room is cleaned up. Now we just have to fill the bed up with water and get a dresser in there and she’ll be all set. It was nice to have some company, Mom stopped over too, it was almost a full house. Lori was sleeping since she worked last night and spent the morning at the doctors office. Actually I have to wake her up in an hour since she has to go to work again tonight. Looks like I’m going to have to forage through the freezer for dinner. :(
I’m defiantly going for a walk tomorrow since the weather is supposed to be sunny and warm. I didn’t go outside today but I got lots of exercise helping Dave move stuff around in the house. I was pretty surprised how exhausted I get after just a few minutes of moving the furniture. I’ve got to put on some muscles, my legs and arms look all flabby where my muscles used to be.
That’s about all from the center of South Windsor. I will again try to make an entry here every other day so you’ll all know that I am still alive and nothing has happened. That’s all folks!

Tuesday, October 01, 2002 at 07:59 PM (CDT)

Day 33
Today was my second visit to Boston and the Dana-Farber clinic for follow up care and tests. My blood tests were good, I showed a small decrease in my white count, from 2.4 to 2.1. Although I expressed concern to the doctor about it, he assured me that the count was sufficient to show the growth of new white cells and that sometimes white counts can remain low in non-related transplants for up to a year. I was a little relieved to hear that but I had always heard that the platelets are the last to start producing (sometimes all the information is confusing). My red cell count was identical to last weeks number and he said that it indicates I am producing good red cells. They are still not close to being the numbers of a normal person but the early progress is encouraging. The ever important platelets went from 51 to 71 which was a surprise to the doctor for the aforementioned reason. Earlier I had been told that platelets are always the last thing your new marrow would produce (especially in a non related match) but now they seem to be producing platelets faster than anything else. Of course the disclaimer the doctor mentions is ‘everyone is different and each transplant patient reacts differently’. That’s okay, I know that a lot of this is experimental and there is nothing carved in stone for this whole experience.
One problem the doctor did disclose today was that my donor had a virus that was recently detected in my blood tests. The virus is called CMV or Cytomeglovirus. According to the doctor, the virus was aquired by the donor years ago and my have simply been something as simple as a cold with it’s symptoms. However, since it is a virus, it remained in the donors system and now has been passed to me. (Lucky me) The only issue that concerns the doctor is that if the virus decides to become active again (apparently it occurs in 25% of transplant patients) it posses a wide variety of concerns due to my compromised immunity system. As with any virus, like the flu, it can have serious consequences. There is a blood test that they will be doing every week which, according to the doctor, will show if the CMV virus will become active within a few weeks time. That lead time will allow them to administer certain antibiotics designed to stop this virus. The reason they don’t administer these antibiotics now is that there are many side effects associated with this antibiotic and to administer them preemptively is risky. So for now I just have to sit tight and hope the virus stays dormant. They said that if my immune system builds up sufficiently that within six months or so I won’t have to worry about the virus, my body will be able to handle it.
The weather was beautiful today and of course since I was so tired from my trek to Boston I forgot to go for a walk when I got home. It’s supposed to be nice tomorrow so I’m definitely going out for a walk. The nutritionist told me today to eat more ( I haven’t gain a pound yet) and exercise. I think that means less TV and more walking.
By the way, the link that appears at the bottom of this page that has the pictures attached is now working correctly. You can click on that link and the last few photos will show you what I look like now. I do however seem to be losing more of the fluffy hair on top and the side are almost completely hairless. This morning’s shower caused about a million little hairs to fall out. (I don’t know why) I’m going to be writing my journal entry every other day unless something exciting happens, so stay tuned.

Sunday, September 29, 2002 at 08:45 PM (CDT)

Day 31
Wow, it seems like only yesterday that I was typing an entry in the journal, but apparently its been more than a few days. Today was sunny and warm so I sat outside for a few hours and read a book. (Fast Food Nation) Randi, from across the street, stopped by and chatted for a while and I enjoyed the warm sunshine. At about 4pm it started to cool off a bit and the Patriot and the Giants were on TV so I decided to go inside. I totally forgot to go for a walk I guess that means tomorrow I’ve got to go for 2 walks.
Al stopped by this morning before he flew back to Florida. He took some digital pictures of what I look like now and said he would post them on that site that has the hyperlink listed below today’s entry. I tried and it wouldn’t link up so Al said he would work on it. I will let everyone know when the link works and you can check out what I look like with the half-chrome dome and little tuft of hair on top. (Now you’ll know why people stare at me when I walk around the block)
I’m still feeling pretty good overall. Fatigue is a big issue, I’m pretty tired most of the time. My temperature is staying normal but I’m still not gaining any weight. This morning I was down to 125 lbs. Food still taste nasty, I am only able to distinguish a few different flavors. I can taste salty things and since I tried a pickle yesterday, I know I can taste vinegar. (The pickle was so nasty I had to spit it out, the vinegar was the only taste I could distinguish) So eating regularly and trying to put on weight will be difficult I can tell.
This Tuesday will be another trip to Boston to see the doctor at Dana-Farber. I am counting on my blood tests being good since I am feeling pretty good. I know that there is still a whole lot of time that I have to be cautious about exposure to germs and watch what I eat, etc. Sometimes I just get a little impatient thinking that I’m well enough to be normal, but I know that I just have to temper my enthusiasm. Hope everybody had a good weekend. Stay tuned for future postings.

Thursday, September 26, 2002 at 07:18 PM (CDT)

Day 28
Today is Thursday, yup I slacked off yesterday and didn’t write an entry in the Caringbridge. I had a great reason though, Lori wore me out. In the afternoon we all decided to walk around the block. I had gone halfway around and my legs felt like rubber, maybe about ½ mile, and I thought that was enough. Since we were already halfway done I completed the rest and boy, when I got home I was exhausted! It is humbling to experience the strain of a walk that just a few months ago was no big deal. In any event, I crashed on the couch while Lori made dinner and didn’t have a whole lot of energy for anything else all night.
I really should update the journal everyday but my life is a whole lot more boring since I am out of the hospital. Today’s highlight was a visit by the visiting nurse to change the bandage that covers the catheter that still comes out of my chest. Since the hospital told me that the catheter will probably be there for a couple of months, the covering needs to get changed every week and the site needs to get checked for infection. The covering change went well and didn’t hurt a bit. The nurse checked my other site where the other catheter was installed and that site was almost all healed up. I got a clean bill of health from her and she’ll see me again next week.
Most of the rest of today was spent sleeping. Maybe since it rained all day and was chilly, but I threw a blanket over myself and fell asleep on the couch. Lori worked upstairs for a while and promised I would have my room and waterbed back by Saturday night. Upstairs might be a little warmer and comfortable, the only thing is that I am afraid if I go up there, I’ll never want to get out of bed and go for a walk. I guess that might not be so bad for a few weeks.
I’ll try really hard to be sure to post something tomorrow, just warning you that it might be a little boring. Thanks once again for checking in!

Tuesday, September 24, 2002 at 08:31 PM (CDT)

Day 26
Today was the big trip up to Boston for my first clinic visit. Even though we left very late (9:30) Lori’s speedy driving got us up to the right exit on time. As usual, traffic was nuts and it took us a few minutes extra to get to Dana-Farber. Lori dropped me off out front and I went in with gloves and mask on. The entire waiting area had been redone and I didn’t know where to go. I finally checked in and within a couple of minutes they clinic called me in for blood samples. Even though the lobby was full with about 100 people, I breezed right in. Lori found me in the clinic right before they pulled my blood since my BMT coordinator, Toni, stopped in to visit me. Lori was brave and didn’t pass out or puke this time while they pulled about 15 vials of blood from my catheter. She says that she’s used to the tube going into my chest (I think she’s kidding). Within a few minutes after they did vital signs, they sent me to another part of the hospital to meet with my clinic doctor and BMT nurse. Within a couple of minutes he dropped right in. Since it was so quick, we talked about my progress at length while waiting for the results of the bloodwork to show up on the computer. After 15 minutes or so, I got the results.
Although I was surprised at my white count being only 2.4 and I was afraid that he would order some more medicine, Dr. Antin was satisfied with that number. He originally told me that my counts would probably drop by half, these white counts dropped by 2/3rds. He told me that it was still higher than my body usually had and it would be okay for another week. Red count was real high 36.8 and that was still probably a result of the 2 units of blood they infused last Friday. The big surprise was the platelet count which rose to 51 (normal person is 150 – 450). The count was never that high even with the regular infusion of platelets I had received and was also unusual since platelets are the last count to rise. Dr. Antin also said that especially in unrelated match transplants, platelet count can take 1 year to rise to acceptable levels and should have dropped after taking the growth factor too. Although he didn’t have an explanation for the rising count, he also said not to be concerned about it. Dr. Antin said I was good to go for another week and that I don’t need any tests or follow up until next Tuesday!!
We met with a nutritionist for a while who reviewed what I should be eating, both quantities and types of foods. She suggested many more calories and foods with more minerals in them. She said munching between meals is a good thing and I should always have something going through my stomach. I told her that the problem is that all food still taste like Styrofoam! She said it will be a month or so before my tastebuds start to come back. This morning Lori got me a coffee for the trip up and even with a few extra sugars inside, I could barely swallow it. Most food is just nasty tasting.
The rest of the day I just laid around since it took a lot out of me. I laid on the couch and napped for a while. Lori made a delicious dinner and now its journal time. Tomorrow is a relaxing day but I will let you know what’s up.

Monday, September 23, 2002 at 07:32 PM (CDT)

Day 25
My second full day back at home and I’m lovin’ it. I slept a little late today and messed up my medication schedule which seems very time specific, but I’ll stay up a little late so the meds are taken at the appropriate time spaces. Lori went to CVS to pick up the rest of the medication today and it still wasn’t in stock. Finally they called the house and said that it would be in on Tuesday, but it would be liquid instead of pills. It took another few hours of talking to the hospital in Boston and the pharmacy before we straightened out that mess. The issue was an important medicine to help prevent GVH disease and it’s something I can’t go without. I won’t be able to get it until I get back from Clinic at Dana-Farber tomorrow, but the dosage is only once a day and Dave says that’s okay.
I’m a little anxious about tomorrow’s visit. The nurses at the hospital have warned me that your first few weeks at clinic visits can be a surprise. Not only do I have to show up with the mask and gloves, but according to the nurses I need to plan for the worse and hope for the best. They tell me that I need to pack a lunch since it might take all day to administer whatever treatment the doctor might think I need, but also be prepared to be readmitted to the hospital if certain blood levels aren’t up to levels they are expecting. My blood test I took at Manchester hospital yesterday seems to have gotten lost in Boston on Sunday night, but during a quick conversation with the head nurse today, she recalled that the white, red and platelet levels were not too low and the floor doctor had said that he was satisfied with the results. I’m sure that I will have to have bloodwork done more than my once a week clinic visits and I am hoping that I can have them done locally at my oncologists office. They usually print out the results in minutes and that satisfies my anxiety about my counts. That is always the first indication of how I would be progressing and if my counts are going in the right direction.
When Al comes up this weekend I will have h