©1999-1999 ICFTP
What're you, kidding?
notes in blue are from Dr. Salzman's reply to this article
(deep breath, big sigh)
Blood is manufactured in the bone marrow, by cells known as stem cells. These cells create the white blood cells that fight infection and foreign matter, the red blood cells that carry oxygen and nutrition, and the platelets, which form clots and scabs. My problem is that my stem cells make way too many white blood cells. Unfortunately, they don't know this, they're just doing what they've been created to do. As far as they know, they're operating correctly. Hell, I tried to talk them out of it, but they just look up from the workbench where they're happily churning out millions of white blood cells and say "Hey buddy, we're just doing our job. See this purchase order from the Genetics Department? It says MILLIONS of these things, so WE MAKE MILLIONS. Now beat it." So they've gotta go. Unfortunately, I can't live very well without blood, and somebody has to make the blood, so I need stem cells to replace the defective ones. Enter my brother, Neal. Turns out that he's an almost perfect genetic match (convenient, eh? I thought so.) and he's willing to let me borrow some stem cells to kick start my immune system once we kill the old ones off. Easy, huh? Not quite.
In order to kill my old stem cells, I get the joyful experience of five days or so of intensive and radical chemotherapy. The chemotherapy for the transplant takes longer than 5 days (sorry). A catheter is surgically placed in my chest, into the vein that leads to my heart. This is because there's gonna be so much shit pumped into me and taken out of me that my veins could not take the abuse if it was done with a needle every time. For five fucking days, they're gonna bombard me with chemicals to destroy my immune system, to kill the defective stem cells and make way for the new ones. This would, of course, be fatal if they were not also working frantically to keep me alive. In addition to attacking the stem cells, the chemotherapy attacks all soft tissues... the lining of the mouth, stomach, intestines. It causes intense nausea, vomiting and diahrea. Since my immune system will be effectively non-existent, the viruses that we all carry around and never notice are going to have a fucking field day. The viruses that cause warts, cold sores, etc, are suddenly going to find a very friendly environment in which to live and reproduce. I will lose all my hair and fingernails. I will most likely be sterile after the treatment, and since I very much want children someday, I'm gonna be visiting the sperm bank, donating, and keeping millions of the little wigglies on ice. I'm gonna have a monthly 'sperm bill'.
Your immune system has to be suppressed so you will not flat out reject your brother's stem cells. And yes, while we know that viruses can reactivate during this time period, we also use anti-viral agents to try and keep them in check (we do a pretty good job of that). You will lose your hair and fingernails but the nails won't fall off for a few months.
Towards the end of the chemo treatment, Neal will come in and donate his stem cells. This process is similar to the dialysis that kidney patients undergo. Neal will have a catheter inserted, and have to hang out for a few days hooked up to a machine that will filter his blood for stem cells. After the harvest, they will transfuse the cells to me through the catheter in my heart.
This is another danger point. At this time, what's left of my immune system will probably attempt to fight the invasion of new cells. A little of this is good, and shows that my immune system is beginning to work. A lot of this is not good. It can be fatal, in fact. It's called 'Graft vs Host Disease' and is one of the things that people undergoing this treatment die from. I will live in a clean room for about thirty days while my body (hopefully) rebuilds its immune system from the ground up. During this time I will be given many blood transfusions, and a close watch will be kept on every aspect of my system. After that, I will live in close proximity to the hospital for a number of months, continuing the transfusions and monitoring. After that I will get to go home, but still have to spend a lot of time at the hospital, which is just about my least favorite place, dammit.
While some people do die from the complications of 'GVH', it is also one of the mechanisms by which you are most likely cured of your CML. We call this graft vs. leukemia effect or GVL. Some people can get this GVH thing to such a small degree that it is not detectable clinically.
Hopefully during this recovery time I will be able to continue to work, at least to some degree. Luckily, the nature of the work I do allows me to work over the Internet. I will continue to maintain this page, keeping a journal of exactly what happens to me.
God, this has been draining. I'm going away now. I feel like finding a random person and telling them to fuck off, just fuck off. This shit sucks. I'm not going to sit here and bitch about what's happening to me, but if you ever want to pick a fight, come up and criticize me about how I'm dealing with this. I'll put my foot so far up your ass you'll be trimming my toenails with your front teeth.
Finally - don't forget I gave you a worse case scenario. Some people feel so good that they are begging me to release them from the hospital because they are bored.
"Don't lean on me, man, cause you can't afford the ticket..."