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Archive for March, 2010

Before I get into the leukemia update portion of this post, I would like to announce the launch of my website, www.hypnotictoast.com! It collects all my digitizable work to date, and will be a major platform for new work. Check it out!

There have been several episodes related to my leukemia since the last time I posted, however the current effect is zero sum: I’m still going good, my counts are going up, and I feel better. Specifically, my platelets, which had been dropping for a week, shot up to 87 thousand parts per million, which is safely out of the critical range. Also, my red blood cells and hemoglobin have been steadily creeping upwards, although my white blood cells did drop to 1 thousand (where the low normal is 4 thousand). However, the doctors aren’t concerned, as it’s expected that the blood counts will hop around a bit.

A few weeks ago, I was complaining of nausea and stomach cramps, which the doctors thought was gut GVHD, and if there was enough of it there, they would immediately treat me with steroids (Prednisone). So they did an endoscopy, which for those who are not familiar is when they take a giant hose and stick in down your throat, and take samples of your stomach lining. I was pretty freaked out by the concept, but it turned out that they knock you out for the procedure, and I literally remember nothing. It was like that half hour didn’t happen. For me, it seemed that as soon as I closed my eyes I started waking up, and I thought I was coming out of it too soon. Then I opened my eyes and saw I was in a different room, and judging from the amount of drool on my pillow, had been there for a while. Later, I saw an episode of House where they perform and endoscopy, and though the girl was knocked out, she kept making gagging noises during the operation. I kind of hope that just Hollywood, but I have a sneaking suspicion it’s accurate. For some reason, it’s fine to think that people stuck a tube down my throat which I have no memory of, but if I was making gagging noises? Totally creepy.

Yet I digress. When the results of the endoscopy came back, there wasn’t enough evidence to make a case for gut GVHD, so I dodged the Prednisone. It is almost definite that I do have some GVHD, but it’s very mild, and as I’ve said before, a little bit of GVHD is quite good. One statistic said that people are something like 50% less likely to have a remission if they have had GVHD in some form. In other news, I’ve been exercising much more; every day for one hour or more, plus walks (It’s so beautiful!). Thanks to Uncle Jim and Aunt Mary for the Thera-Bands, they really get the job done!  And that’s all there is. Catch you all on the slip slide.

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Well, it’s taken me a few days longer to come up with the second part of catching up with transplant boy, but the Olympics were on! Man, that final hockey game was so amazing, I may just start following the sport.

Right, so in the last part’s thrilling cliffhanger, I was about to be admitted to the hospital for the transplant procedure. The first part of my stay was pretty boring; they hooked me up to my IV pole (which I stayed connected to at all times) and I hung out for a few days. My room was nice for a hospital, but small. The ward, 8th floor Pavilion East, contained around twenty rooms – all transplant patients – surrounding a large nurses station. The entire ward’s air was filtered and pressurized, and they kept the humidity at 17% to prevent against any sort of bacteria, but it was brutally dry. Even though I drank lots of fluids, and was constantly on a hydration drip, my lips and hands still cracked up. A&D ointment was used liberally.

Throughout my time there, lots of friends and family came to visit, which was very nice; otherwise the days just sort of blended together. After a few days of hanging out, they started me on high-dose chemo through IV. I thought I’d start puking immediately, or have some other violent reaction, but nothing happened. For four days they loaded me up with chemo, and I felt no adverse side effects. They encouraged me to exorcise, so I would walk three miles around the nurses station a day to keep my muscles moving. A few days after the chemo, I started to feel tired, but not debilitatingly so, and kept up my exorcise.

Having been chemoed enough, I was given two days rest, then on January 19 I the transplant, and let me tell you it was one giant anti-climax. Like the ending of Monty Python and the Holy Grail but less hilarious. They just took a bag of stem cells, hooked it up to my IV, and let it drip in. That was it. My sister had actually donated the cells that same day in the same wing of the hospital three floors down, and while I actually never got to see her, I felt the connection. For her to donate, she actually had to get a catheter as well (in her hip) because her veins were too small. Then they yanked her blood, spun it around the room in lots of different tubes, extracted the stem cells, the funneled the rest of her blood back into her. At least, this is what I hear. She did great, made friends with all the nurses, and after two days took a train back to Vermont and was working the next day. Ah, to be 18 again….or 23 without cancer, which is what this transplant aspires to achieve, so I’ll just go ahead and make plans to do something physically challenging in a year.

After the transplant, things remained the same until about a week and a half later. Then, the side effects hit. I got sores in my mouth and throat, and my mouth was constantly overflowing with watery phlegm. Revolting, I know. I entered a solid week where I did not eat, and was fairly dead to the world. I only got out of bed to go to the bathroom. It was one of the more miserable times in my life. Also, I could not sleep due to the pain, and the doctors wanted me to rest, so they hit me up with pain meds. First they had me on Oxycontin, the drug that Rush Limbaugh was famously addicted to, and when I asked for something stronger, they gave me morphine, straight into the IV. Now, I appreciate them taking out the big guns, but I would have thought there was some sort of gradation between pain pill and morphine. Finally the side effects subsided, and I got better and better until I was only marginally phlegmmy and had got rid of most of the throat sores.

On February 2nd I left the hospital, and came home, and after a week or so my mouth sores were gone completely, as was the snot. At first I was so tired I could hardly do anything, and my mom, who had brought me home cooked food almost every day in the hospital, continued to take care of me at home. After another week or so, I was strong enough to start doing some things by myself, but it’s still nice to have someone else cook for you all the time 🙂

So now it’s been about a month since the transplant. I’ve been going to the doctor’s twice a week to get my blood checked (so far so good), but otherwise I can’t really leave the house. My immune system is that of an infant’s, apparently, so I can only eat well cooked food, and I can’t be around sick people or people who have children in school. However, after 100 days, April 29th, I will be re-evaluated, and if everything looks good (which I’m confident it will at this rate) Restrictions will be lifted. I’ll have have to be careful and pace myself, but I will be able to re-enter society. We’ll see when I’ll be able to work again, which could be up to a year or more. Until then, luckily I got Social Security Disability (And at 23! Getting my payout young). That’s about it so far; I’ll update more frequently now!

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