This word I like... We architect our life...
A song, a sigh... developing words that linger...
Through fields of green, through open eyes... It's for us to see.
Interanimate: To animate or inspire mutually

Thursday, April 24, 2008

Day +106 Top Ten Recovery Indications

Top Ten Indications You Are Recovering from Your Stem Cell Transplant

10. You are discharged from the BMT unit before the estimated discharge date.
9. You can start tasting food again.
8. You start going crazy sitting around 'recovering' all day.
7. Your doctor asks you not to hang around the BMT unit between appointments.
6. You have to start clipping your uneven new hair growth so you dont look like Gollum.
5. Your doctor tells you it's now ok to drink alcohol.
4. You start thinking about creating a YouTube video diary about your experiences.
3. Your can actually understand the words on your latest bone marrow biopsy results.
2. Your pills are getting tapered off to the point where you can swallow them all in one gulp.
1. You start thinking that the bald headed look is rather fashionable after all.

Tuesday, April 22, 2008

Day +104 Graduation, BMB Results

This morning I had my last regular visit to the bone marrow unit at Scripps. It was both sad and wonderful. Wonderful news is that my bone marrow biopsy results indicate a quickly recovering bone marrow. No sign of MDS and related anomalies. The cure is definitely working! On the blood count front, my platelet count continues to recover from the April 8th dip. This morning was my last dose of Maribavir, the study drug to prevent activation of CMV. At the conclusion of this trial today they took the usual few tubes of blood from me, a urine sample, and an EKG exam. I was asked to complete a quality of life survey. Finally, when Dad and I were ready to leave the room, the nurses brought in a graduation diploma, which I have attached to this post. It is signed by many of the nurses and a doctor, I suppose the ones on the unit today.

That brings be around to the sad part. I am sad not to see the nurses anymore, although Cathie and I plan on coming in to deliver a group gift in May. Every nurse was super to work with. They were all upbeat, cheerful, knowledgeable, patient. Cathie and I got to know some of them well. I should say the same of the doctors. They all have been instrumental in bringing me to this new point in my life, one where my prognosis may now be measured in dozens of years rather than a few months. It's hard for me to fathom. Now I'll go to weekly appointments at the clinic nearby where I'll see the 3 nurses who provided 'supportive care' in the form of blood transfusions and Procrit shots in 2006 and 2007. Likewise, they are great nurses. And likewise, when I left their care last December I was very sad because I did not know if I would see them again. So this will be a homecoming of sorts and I think the nurses in the clinic will be glad to see me still kicking and as feisty as ever.

I'm going back to being a normal patient. I will check-in the front desk for the appointment, wait outside the offices like everyone else, wait my turn for a blood test in the lab; like everyone else. At the hospital up until today, I'd just show up, get immediately directed to a single room with a bed, and assigned a nurse. The transition to the clinic is a step towards rejoining life! The special treatment is ending! The progress must be real!

Friday, April 18, 2008

Day +100 Milestone, Sucked Gas, Once a Week

Today I reached the 100 day milestone, had to suck up a nasty tasting antibiotic gas, and converted to a once-a-week outpatient. And, oh yeah, my doctor smiled. Gad, the life of a post-transplant, never a dull day. Mmmm, what else. I also wrote my donor a thank you for his card from a couple weeks ago, and I got doctor approval to drink a beer or a glass of wine twice a week. Things are happening so fast!

The long story on 100 days.
100 days marks the beginning of phase 3 of the transplant recovery process. Most of the dangers from a stem cell transplant occur in the first 100 days. Most of the remaining danger occurs between day 100 and day 365, so called phase 3. So reaching day 100 is a great milestone. I feel very, very fortunate to still be with you, my friends and family. In the next 265 days I plan on doing everything the doctors tell me to remain healthy. Your support and inspiration continue to mean everything to me.

The long story on the doctor's smile.
My doctor has been a very serious kind of guy since I started the transplant process January 2. He is part of a 3 doctor transplant team at Scripps. When I was incarcerated in January the doctor on call for that week would make rounds every morning, visiting every occupied room. Here's the thing with the smile. These doctors go room to room on their morning rounds, and they usually see the complicated cases first. I surmised early on that by the time the doctor got to my room his mood was unpredictable but usually somber. My doctor hadnt cracked a convincing since I entered the program. But today his smile was ear to ear. Cathie and I smiled back real big.

Sucking Gas.
The gas I had to inhale through a plastic pipe was called Pentamidine. This anti-protozoan concoction will help me avoid getting pneumonia over the next couple months. It needs to be administered every 3 weeks. It should not have a side effect of suppressing my blood counts, as did Septra (Bactrim). Pentamidine is yet another drug I've taken that will most likely never be abused for recreational purposes. It tastes really bad and makes you dizzy.

Schedule Change.
Starting Tuesday I'll start going to the local clinic to see my doctor once a week. This is sweet progress. I mean the part about getting to drink beer again. :-)

Tuesday, April 15, 2008

Day +97 Ouch, Progress, Gollum, Salad, Bday

Todays bone marrow biopsy was ouch. My Dad was with me at today's appointment and got to finally see me undergo this procedure. No screaming, just pillow clutching and grimacing. I was hoping he would read his paper cuz I had doubts about his ability to dispassionately watch the proceedings. But no. He had to watch. I thank God I did not have to watch, mainly cuz I laid on my belly as they cork screwed into my tailbone someplace. I hear the tool is very impressive. And, thank God this will be my last bmb until next January.

I've posted my blood counts on the blog page. The highlight is that my whites made a dramatic 25% jump from 2.8 to 3.5. Since I stopped the antibiotic Septra 12 days ago this was the hoped for result. My platelets rose a few points too, signaling a believable end to their mysterious slide of April 1 through April 8. I have 7 more days on the trial drug Maribavir. I am told the end of this drug will also result in improved blood counts. Progress is sweet. My doctor gave me the speech about how the infection protection I'm getting from the drugs I'm taking outweigh the protection I'd get from simply higher blood counts. So it's a trade off, the drugs suppress the blood counts to some degree.

Hairy update. I used my electric shaver's clipper attachment to run around my head over the weekend. The way my hair is growing, up close it appears that random follicles are growing at different speeds and different thicknesses but always gray; I was well on my way to looking like Gollum, 'my precious'. My brief reverse mohawk look would have been a soothing sight by comparison to a single strand comb over. If I let my teeth rot I could join the Hobbit circus, getting extra tips for showing the braided 3 hairs growing on my left big toe. Well, that's another story. The body is still up-ended at this point. I can still feel the ongoing confusion. Believe it or not, I havent written about everything that has happened to me since my transplant!

Last Friday there was a brief hint by a nurse about a possible end to my neutropenic diet. The goal of this diet is to minimize the introduction of bacteria. I've been on this since January 2. The diet is difficult to follow during strawberry season. I cant eat fresh fruits, raw nuts, salads, leftovers, many cheeses; the list goes on and on.
Today my doc said I can now eat 'anything I want' provided it is prepared at home. I can now eat strawberries, apples, cheeses, salads, etc. The one thing I'm still not allowed to eat is restaurant-prepared food. I especially must not eat at buffet style restaurants where food is left out for all to sneeze on. Kinda scary, that. I think I'll take Soup Exchange permanently off my list after the nurse told me some stories about it.

Maddies 16th birthday was yesterday. We threw her a home cooked family party. After supper we sucked up the helium in half a dozen balloons, talking like Mike Tyson and Betty Boop. We had a blast. We love her and I am very glad to still be around to enjoy this event in her life.

Good health to all! Thank You for all you good wishes!

Saturday, April 12, 2008

Day +94 Plats Up, Happy Man

After my last post I received several reports of children who were allowed to view my anti-mohawk haircut picture and subsequently had to enter therapy for chronic nightmares. I apologize for this and am I'm hoping to correct the damage by posting another picture taken only minutes later. This is a picture of a 'nice' man who is happy with his new haircut.

Yesterdays blood test showed a slight improvement in platelet counts. Yay. What's next eh? Whites slid, then platelets slid. I guess it just reinforces the fact that I'm in the middle of a 6 month recovery process. It's easy to lose sight of that.
The antibiotic I was taking for 3 months will be replaced with one who's name escapes me. It is administered in a very different manner, it is inhaled. On April 18, my +100 day milestone, I will go to a special little room in the hospital where I will suck it up. The good thing is that the drug is dosed only once every 3 weeks. I am told the dosage device is a long pipe. There will be a native american doctor present who may be wearing several necklaces of beads and helping to administer the drug. Ok. NOT on that.

There is a chance that the trial drug I'm taking, Maribavir, may hinder blood count improvements. But I am due to conclude the use of that drug in around 2 weeks. So far I have tested negative for CMV (cytomegalovirus), the main target of Maribavir. So I hope to complete the 12 week study. The study coordinator nurse tells me that I may not learn if I was taking the study drug or a placebo for 1 year, until the entire study is over. I'll tell you what though. If the little blue pill is a placebo they sure went out of their way to make it nasty tasting. Would the drug maker go through such lengths to keep the trial patients from knowing what they are taking? It really tastes like a drug to me. Anyway, it doesnt really matter, just a matter of curiosity. I guess if I start growing a second spleen or something and it's due to the study drug I'll wish I hadnt taken it. However, it's only by patients volunteering for these drug trials that the drugs can get approved and help future patients.

I was told to reduce my immune suppressant drug, Tacrolimus, by another milligram. So now I'm taking 4Mg, half of what I started with. When this dose goes to zero my doctors will be ready to certify my immune system as able to cope with the real world. I can go back to work in an office, stop wearing a silly surgical mask, eat raw spinach, go see a movie. I can hardly wait!

Wednesday, April 9, 2008

Day +91 Bad Hair Days

Yesterdays appointment went like most others in many respects. I'm not having any physical symptoms of infection or graft vs. host. However, one thing that has come down unexpectedly is my platelet count. Since the month started I went from a reading of 95 to a reading of 32 yesterday. If it gets below 15 they will need to take action, namely a platelet transfusion. I'm told the platelet anomaly is most likely a reaction to the regime of drugs I've been taking over the last 3 months. They see this kind of thing a lot. They've had me stop an antibiotic, the likely culprit. The common drug name is Septra. They also suspect Septra for my recent bout with low white counts. So now I am off the drug since last Friday. Already my white cell count has risen to 3.0 from 2.6. Hopefully by this Friday my platelet count will show an improvement. The doctors say that everything points to my drugs as the problem. Next Tuesday I'll go in for my 5th bone marrow biopsy. Another 15 minutes of frantic pillow clutching and deep breathing will be in order on that day. I wish they'd just use the same hole they poked in my tail bone last time.

This post is my official foray into chemo 'hair'. Everyone has been asking me about what happens to your hair as a result of intensive chemo. NOT! Actually no one has asked but I think the chemo hair issue is pretty interesting so I'm going to take a blond moment here and brush you up on the subject. I promise knot to bore you with too many de-tails and I will keep it straight and short. :-)
How weird is hair? Not having any for awhile adds perspective. The picture I've posted to the right of this post was taken just a day before submitting myself to a month long incarceration in the bmt unit. You can get a rather large wallpaper-worthy version by clicking on the picture. Be sure to check out the clear patch on my neck. This covers the hole where, just a day earlier, they had threaded a tube through my jugular down to a place above my heart. The reason I look pissed off is that... I usually am after surgery. Also, I had asked the barber for a trim around the sides and found myself looking like a reverse mohawk. Really though, I did not want to worry about losing my hair after chemo so I asked Cathie to chop it off in advance. We had our fun clipping it off. There were happy pictures taken too! I swear!

Here is what happens to hair during chemo.
The chemical, Busulfex interferes with cell division. Basically, in the presence of busulfex, cells trying to divide can NOT. There are over 200 different type of stem cells in the human body. They divide at different rates. This much is known: bone marrow stem cells are some of the quickest dividers. Their life span is less than 6 days. If they cannot divide successfully then they die off. This is how the chemo gets rid of the old stem cells. However! All other stem cell division activity is affected. For instance, stem cells that divide every 24 days will not be totally destroyed, only the ones that tried to divide during the 6 days of chemo. Therefore 75% of them will survive and eventually repopulate themselves back to normal numbers.
Where does hair come in? There are stem cells that create the cells that create hair. Hair stem cells divide pretty fast but not as fast as bone marrow stem cells. During chemo, many of them perish. I'm guessing that a majority of hair stem cells bite the bionic dust during chemo. It takes months for the remaining hair stem cells to recover. There is some speculation that donated bone (myeloid) stem cells may be able to differentiate 'upwards' and help repopulate other stem cell populations throughout the body. Amazing things, those stem cells.

I remember my head hair falling out over a short period of time around day +7. I hated seeing the dead soldiers on my pillow as I came back to my mechanical bed from my many trips to the boys room. So, when I took a shower I massaged my scalp and that sped up the processes. My last facial shaving was done around the same time. Funny but not all hairs are created equal. My eyebrows survived albeit thinned. Eyelashes did not take a hit. The hair on the outside of my lower legs bit the dust but much of the hair on the inside survived. My arm hair, thinned but intact. Yeah, I think I'll leave the inventory taking at that point except to say that the worst hair loss was definitely on my head and face, sans the eyebrows and eyelashes. Everywhere else got a major thinning.

My hair is coming back. This is how it's coming back; not all at once. It seems like thin hairs started to show themselves first, right above and below my lips. Thicker hairs started growing a little last week so that I felt like shaving a few days ago. Unfortunately my dreams of having my original hair color come back have been shattered. The gray is returning along with the dark brown. The hair on my head is started to show, barely. It is causing a lot of itching up there so I've taken to massaging my scalp a few times a day. Maybe this helps the hair follicles find the best path to the surface without getting hung up along the way, causing irritation.

Well, there you have it. All you never wanted to know about chemo hair loss and recovery! You heard it here first! Happy shampooing and happy health to all!