Today is Wednesday May 26th, the fifth day of my latest stint in the hospital. I’ve been getting the photophoreisis every morning since Monday, and it’s been going well. The procedure itself is pretty boring; the nurse just pops in an IV and you have to lay down for 3 to 4 hours, and not move your right arm much. It’s painless, and I often sleep. From all accounts, the process is effective, however it does work slowly. My billireuben counts have only been going down slightly each day, and today they actually went up, from 6.8 to 7.2. This, apparently, is normal, and just part of the healing process. Also, I have new information to clarify my last post, where I said that the photophoreisis worked “by magic:” this is the common medical opinion. I am serious; doctors have literally no idea why or how it works. They just discovered a bunch of people with skin conditions eating a particular plant near the nile, getting exposed to the sun, and getting better. They then extrapolated those conditions for other uses, but still have no idea how it does what it does. Kind of weird, kind of scary, and kind of cool. You be the judge.

However, the big thing that is really effecting me side effect wise is water weight from the prednisone. As I’ve mentioned before, one of prednisone’s (many) side effects is the catastrophic retention of water, of which I am effected. Unfortunately, I have only gotten bigger, now sporting at least 20 lbs of excess water weight, putting my weight at 145 lbs (my personal record, far and away). Now, many may think, “Chris is a stick! A sickly stick. Stickly, you might say. 145 lbs is a healthy weight.” To which I reply, “Yes, it very well might be, but only if it’s real.” As it stands, lugging around a ton of water in your thighs, stomach, face and feet is highly uncomfortable. It also makes my penis look like Jabba The Hutt, which is scary enough in and of itself, but now everytime I pee I hear him laughing. And on that image I leave you!


Well I’m going back into the hospital! Turns out the oral prednisone I was taking at home didn’t really work the way the IV drip prednisone did, so my billireuben went up. I was actually supposed be admitted today, but the room is still not ready as of 8:00pm (and probably won’t be until 11:00 or 12:00), so I’m just going to go in first thing tomorrow morning. They will be doing another procedure on top of the prednisone that is apparently very effective called photophoriesis. What will happen is they will hook me up to this machine through an IV, and filter out a small amount of my white blood cells, then put the rest back in me. Then they radiate those white blood cells, pump them back into my body, and then hit them with artificial UV sunlight, seemingly for no logical reason. However, apparently this process reverses GVHD by damaging the T-cells that cause the GVHD, and not the ones that fight it. My only guess on the science of this is that it must be heavily based in voodoo. Anyways, they will start me on this on monday, and continue for 3 or 4 days, depending on how well I respond, at which point I could be discharged. Hopefully I’ll only be in the big house for a week, maybe less. Also, the photophoreisis should help me get off the prednisone quicker. After I’m discharged, I will still need to go to outpaitent for photophoreisis probably at least 3 times a week, and slowly decrease. Chances are I’ll be doing this for at least a month, and I’ll probably still be on some dosage of prednisone after that. So that’s the update for now, other than I had really good indian food today. More when I don’t have to pee as bad.

Finally, after a week of siting around in the hospital, and waiting around all day today, I was discharged from the hospital! Thanks to my Aunt Terry for hanging out with me all day and driving me home. Just a quick update:

My liver functions are steadily returning to normal on the prednisone (steroids), and while I’m still under close observations, things are getting better (including my color). There are some side effects; first, this particular steroid weakens muscles, especially in the legs, so I have to do a lot more exercise just to keep them at the level they were. Also, the meds jack up my blood sugar, so currently I am on a diabetic regiment. I do the finger sticks (blood sugar checks) before each meal – I have been averaging about 350 – and then inject myself with insulin (usually10 units). This may seem freaky to some, but the needles are small and really painless, and you feel really badass doing it. My dad was a real big help today and got all my prescriptions, except unfortunately the doctor neglected to write a prescription for one of the meds (a nasty powder stuff), so I’ll have to go get that in the morning. Finally, the prednisone has the side effect of keeping you awake, hence this blog post at 2:00am! I did have sleeping pills in the hospital, but the doctor didn’t write the prescription for that either, so for at least tonight I’ll have to wing it.

Finally, congradulations to my mom on graduating graduate school! She also got the top honor in the psyche department for having the highest GPA (no surprise there). This is all well and good, however it may force me to go to grad school to beat her. Alright, well that’s enough for now. Goodnight! (hopefully)

Hello everyone! Sorry that it has been so incredibly long since my last post, however in my defense, there wasn’t anything that juicy to report. Now, finally, there’s some drama! For anyone who doesn’t know the circumstances of my medical treatment since my last post, here they are in abbreviated form.

My blood counts continued to go up, although with plenty of hills and valleys, instead of a straight climb. Three weeks ago I had my (hopefully) last bone marrow biopsy, and let me be the first to say, even though it was my fourth, they don’t get any easier. Needless to say I’m glad that’s over with. During the past say five weeks, there have been graft vs host “scares.” Now I say scares in quotes because having a little graft vs host, as mentioned previously in this blog, is a good thing, as my sister’s cells take care of any strangling cancer cells. It also quickly increases the percentage of the cells in my body that are my sisters, a.k.a. mine are getting killed. It seems sibling rivalry can be traced all the way down to the cellular level. These graft vs host (or GVHD) episodes never really amounted to anything, as there wasn’t enough of a presence to even confirm diagnosis, much less administer treatment.

Aside from some stomach discomfort, I was feeling good, and since my blood numbers were good, I was given a pass to start going out more about a week ago. This was roughly 105 days after transplant. My conditions for going out were strict; I had to wear lots of sunblock, avoid sunlight, wash my hands almost constantly, and stay away from large crowds and coughing people in addition to putzes, although in all fairness, that last restriction was self imposed. I used my new found freedom three times during the past week; once to visit my friend Cat at her new apartment on 171st street, once to visit my friends Zach, Beth and Nick at Sarah Lawrence College in Bronxville, and once to visit my family for mother’s day (Thanks for feeding me guys! It was delicious).

This brings us up to the present day, so without further adiue, here’s the news: The good news is that the full test results came back from my bone marrow biopsy, and I am cancer free! There are no cancer cells in my blood or my bone marrow, and my cytogenetics (which measure if there are any of the original mutant chromosomes that caused the leukemia in the first place), and they showed a normal female. Next stop, estrogen central; I’m going to start caring about shoes.

Now the bad news is, that it has finally been confirmed that I do have GVHD of the liver, and I’ve been admitted to the hospital for treatment. There is a giant fight in my liver between my sister and I, so my liver is not functioning well. Essentially it is not processing and eliminating the toxins in my body, of which there is an extensive amount. I am currently such a bright shade of yellow, I could join the cast of The Simpsons. My Billireuben is very high (a bi product of the liver), which is why I need to be admitted for treatment. The treatment process involves steroids (Not the muscle building kind, I asked), which I will probably be on for a month or so total, including both time spent in the hospital and once I’m sent home. The steroids I will be taking – and have actually started taking already – are a much more potent version of Prednisone.

Well, that’s all the news that’s fit to print, other than I also had time to grow a sweet beard, which combined with my bald head, makes me look like a badass.

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.

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!

Welcome one and all, to another long overdue post! A lot has happened since I said I was going to get a transplant, namely the transplant, but I’ll try to summarize as best I can the last two months. And by summarize I mean talk about in excruciating detail.

The first step of the process was to go into the hospital as an out patient to get rid of a trace amount of the epstein-barr virus I had hanging around in my blood. Epstein-barr is the virus that causes mono, which I never had but had to have been exposed to as a kid. My body kept it under control (it was only a trace), but after transplant, once I had no immune system to speak of, the virus would cause some problems. So they hooked me up to a chemo IV and blasted it out of me. Fortunately, this chemo is a “mild” variety, and I suffered no side effects.

The next step happened on January 11th, the day before I was admitted, which was to implant a catheter. At first I was terrified because, much like you, I thought all catheters had something to do with pee, thinking they would perform some kavorkian crotch surgery on me. Thankfully, this was not a pee catheter; mine was a small tube attached to a plastic plate that they stuck in my shoulder. When I went in for surgery I had decided to be comfortable, so I went commando.

This would have been a great idea, except that they make you change into a hospital gown, a devilishly forseeable practice I failed to make note of. The nurse hands me this gown, which thankfully has two parts – one for the front, one for the back – and tells me to strip down to my underwear. After I was wheeled through the hospital in a wheel chair, which was one of the breeziest experiances of my life.

Inside the operating room was white and blindingly lit, with strange white machines lining the walls, and then empty floor throughout the rest of the large chamber save for the lonely looking operating table in the center. I get on the table, which was bearly wide enough to contain me, and I’m roughly the width of a pipe cleaner, and then they had me hike up my gown dangerously high, strapped my arm  to a small extending platform, shone a light in my face, called over the anesthesiologist while shaving the right side of my chest and told me to relax.

The anesthesiologist grabbed my hand and told me in no uncertain terms not to move. Then he stabbed me with a needle. He did that once more, and the next thing I remember the room is fuzzy and the doctor is telling me that everything’s over and the opperation was a success. I looked at the implant; it was yellow and wedge-shaped, about the size of a shot glass, and had three color coded tubes sprouting from the base. Right then, I felt like a cyborg. Also, I felt that after being knocked out for over a half an hour, and being so precariously clothed, that every nurse in that room saw my nads.

Well, this post is longer than I expected; and I expected it to be pretty darn long. Considering how much I have yet to tell, I’m going to split this into a few parts. The next part will be up tomorrow. See you then!