When dealing with something as serious as curing cancer in the "conventional" method, it's quite different from what transplant patients have to go through. When you have cancer, once you hear the word "remission" from your oncologist, that's it for the most part. In most cases once you go into remission, you are now one of those elite cancer survivors. You begin to cherish every breath you take from that point on because before you were in remission, those gasps of air were in no way guaranteed.
For transplant patients like myself, the story doesn't exactly end there. My issues were cured in such a way that the battle doesn't exactly end with the cure. In fact, the cure itself might be what ends up leading to your demise. In special kinds of disorders like mine and ones like the awful diseases that are Lymphoma and Leukemia, a stem cell transplant to replace the afflicted's own immune system with that of one modeled around the stem cells from a very gracious compatible donor (I think blood donors and donors in general are the saviors of humanity, but I guess my standpoint is somewhat biased). So, at the start of the transplant, you have two organ systems in one person designed to keep the other organ systems safe at all costs. Both with knowledge of what they believe to be invaders (basically any foreign body). Yeah, this doesn't always end well. (this battle is known as Graft vs Host Disease or GVHD. If you've spent any amount of time with me over the last year, I've basically rammed this term down your throat)
Now, from all the tests that these people run on me every week, every indication is that I'm completely free of Myelofibrosis. Of course, this is far from me being cured of symptoms. The GVHD has manifested itself and taken hold of my life like a leach. Just draining the life from me both metaphorically and actually. My life is not my life. When I look in the mirror, I can barely recognize looking back at me. When trying to control symptoms of GVHD, my doctor admits that it's more of a finesse art than it is a science. The first thing he decided he would like to try is what he refers to as "therapeutic phlebotamy"... You might remember it from the middle ages when they called it "blood letting" and used leeches. 500 years of medical advances and the first swing my award winning Oncologist takes is a blood letting. I knew all these damn Twilight movies would have an adverse effect on our society.
Luckily, my hemoglobin counts are actually at a level which the doctor is confident that I can undergo some treatment to reduce the amount of iron and other toxins in my blood that might be causing some of these post cure problems. That's quite a big step if you think about where I was just maybe 2 years ago when every month I was being shuttled to the hospital (once even in an ambulance!) because my blood counts were so low they were afraid I wouldn't make it another few days if the levels kept falling.
You know what, though? This isn't supposed to be a post about my blood lettings, so I digress. This is a story of why I believe us bone marrow transplant survivors have an extra wrinkle on our road to recovery as opposed to other cancer patients.
For us, we're asking a foreign immune system to come into our body, make itself at home, take over part of our native immune system, fight off what the doctors want it to fight off, identify the good parts and protect them, and also make nice with what's left of our old immune system. Wow. Just READING that is exhausting. Imagine LIVING it. This whole situations is basically a benevolent (and PERMANENT) occupation of your immune system. Now, I know what you're thinking... There's no such thing as a benevolent occupation. and I guess that's the point. What's left of the old immune system is constantly sparring with the new one. The new one attacks your body as it sees your organs, blood, tissue, yadda yadda, all as foreign bodies (because to it... YOU ARE! Oh, and if it gets to your intestines... WATCH OUT!). Oh sure, they can prescribe a plethora of immunosuppressive drugs, anti fungal medications, steroids, narcotics, and whatever else you're willing to swallow in order to mitigate the symptoms. But in the end, in the war between the old immune system and the new one, you are left to bare the results. I've had good days. I've had bad days. I've had weeks where I could get up, go to work, come home, and then repeat the process over. I've had days where a normal day of work led me to come home, pass out, and literally not have the strength in my legs to get up. I've just spent four days where I was so fatigued that I spent approximately 30 hours of those 4 days sleeping. Not resting in bed... SLEEPING. I cannot describe to you how miserable you feel after sleeping for 10+ hours and have to wake up not feeling rested. It's enough to drive someone crazy.
So here I am. Am I winning? I thought I was. Back in January I thought I was on the right track to gaining some sort of ground back at work and getting back on the life path that I had invisioned for myself. I saw the 1 year anniversary of my BMT coming across the bend and I thought I would meet it and pass it with a smile and move on. Get to a point where THIS IS NOT WHAT DEFINES ME. Instead, my 1 year anniversary slapped me in the face and reminded me that this isn't over. Not by a long shot.
For transplant patients like myself, the story doesn't exactly end there. My issues were cured in such a way that the battle doesn't exactly end with the cure. In fact, the cure itself might be what ends up leading to your demise. In special kinds of disorders like mine and ones like the awful diseases that are Lymphoma and Leukemia, a stem cell transplant to replace the afflicted's own immune system with that of one modeled around the stem cells from a very gracious compatible donor (I think blood donors and donors in general are the saviors of humanity, but I guess my standpoint is somewhat biased). So, at the start of the transplant, you have two organ systems in one person designed to keep the other organ systems safe at all costs. Both with knowledge of what they believe to be invaders (basically any foreign body). Yeah, this doesn't always end well. (this battle is known as Graft vs Host Disease or GVHD. If you've spent any amount of time with me over the last year, I've basically rammed this term down your throat)
Now, from all the tests that these people run on me every week, every indication is that I'm completely free of Myelofibrosis. Of course, this is far from me being cured of symptoms. The GVHD has manifested itself and taken hold of my life like a leach. Just draining the life from me both metaphorically and actually. My life is not my life. When I look in the mirror, I can barely recognize looking back at me. When trying to control symptoms of GVHD, my doctor admits that it's more of a finesse art than it is a science. The first thing he decided he would like to try is what he refers to as "therapeutic phlebotamy"... You might remember it from the middle ages when they called it "blood letting" and used leeches. 500 years of medical advances and the first swing my award winning Oncologist takes is a blood letting. I knew all these damn Twilight movies would have an adverse effect on our society.
Luckily, my hemoglobin counts are actually at a level which the doctor is confident that I can undergo some treatment to reduce the amount of iron and other toxins in my blood that might be causing some of these post cure problems. That's quite a big step if you think about where I was just maybe 2 years ago when every month I was being shuttled to the hospital (once even in an ambulance!) because my blood counts were so low they were afraid I wouldn't make it another few days if the levels kept falling.
You know what, though? This isn't supposed to be a post about my blood lettings, so I digress. This is a story of why I believe us bone marrow transplant survivors have an extra wrinkle on our road to recovery as opposed to other cancer patients.
For us, we're asking a foreign immune system to come into our body, make itself at home, take over part of our native immune system, fight off what the doctors want it to fight off, identify the good parts and protect them, and also make nice with what's left of our old immune system. Wow. Just READING that is exhausting. Imagine LIVING it. This whole situations is basically a benevolent (and PERMANENT) occupation of your immune system. Now, I know what you're thinking... There's no such thing as a benevolent occupation. and I guess that's the point. What's left of the old immune system is constantly sparring with the new one. The new one attacks your body as it sees your organs, blood, tissue, yadda yadda, all as foreign bodies (because to it... YOU ARE! Oh, and if it gets to your intestines... WATCH OUT!). Oh sure, they can prescribe a plethora of immunosuppressive drugs, anti fungal medications, steroids, narcotics, and whatever else you're willing to swallow in order to mitigate the symptoms. But in the end, in the war between the old immune system and the new one, you are left to bare the results. I've had good days. I've had bad days. I've had weeks where I could get up, go to work, come home, and then repeat the process over. I've had days where a normal day of work led me to come home, pass out, and literally not have the strength in my legs to get up. I've just spent four days where I was so fatigued that I spent approximately 30 hours of those 4 days sleeping. Not resting in bed... SLEEPING. I cannot describe to you how miserable you feel after sleeping for 10+ hours and have to wake up not feeling rested. It's enough to drive someone crazy.
So here I am. Am I winning? I thought I was. Back in January I thought I was on the right track to gaining some sort of ground back at work and getting back on the life path that I had invisioned for myself. I saw the 1 year anniversary of my BMT coming across the bend and I thought I would meet it and pass it with a smile and move on. Get to a point where THIS IS NOT WHAT DEFINES ME. Instead, my 1 year anniversary slapped me in the face and reminded me that this isn't over. Not by a long shot.
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