a malignant growth. In a myosarcoma, the tumor cells attach themselves to the bodyâs soft tissue. It can be connective tissue, muscle tissue, or any other type of tissue. This kind of cancer can occur anywhere in the body but usually occurs in the arms and legs, due to the diagonal tissue that makes up those muscles, and occasionally leads to amputation. I count my lucky stars that my cancer cells are swimming around my lungs.
On the scan the abnormalities are not much bigger than a needle point. In the first scan, the largest tumor was the size of a Ping-Pong ball. Now itâs half that. The fact that the tumors are attached to an organ and that that organ is a lung pretty much rules out an operation. That gives me one less weapon to fight with, but thereâs always radiation.
There are three discernible stages of my disease, and Dr. L tells me I fall in the middle category. Not the toughest group, but not the easiest either. Unfortunately, because my disease is so rare, scientists havenât been able to collect much information on the cause or the recovery process. Most believe it to be caused by an abnormality that developed when I was still just an embryo, but no one can tell me why this abnormality has suddenly decided to try and kill me now, twenty-one years later. In any case, all this has led to plenty of discussion among the pathologists, anatomists, and oncologists at my weekly diagnosis sessions. Apparently, this all-star team doesnât always agree, not even on my diagnosis, but Dr. L tells me I donât need to worry about that too much as long as the treatment is working. Which it is.
My age makes my case a little puzzling too. Rhabdomyosarcoma is very much a childrenâs disease. Getting through the treatment will be as tough a battle as fighting my disease. Therefore, my blood values are carefully monitored. Blood transfusions for my low red blood cell count, leukocyte injections for my white blood cells, and thrombocyte transfusions to boost my blood count even further. Low blood counts mean no chemo. In real life, I can see it in my pale skin and lack of energy, my weak immune system and the constant bruises all over my body.
When Dr. L is finished, I walk out of his office and let the tension ease out of me. Even though Iâve been given good news again, Dr. Lâs office will never be a place I can relax.
I can tell the cure is working, also without the scan. My body is getting used to the new drugs and recovering better after each round of chemo. Iâm slowly putting weight back on, and as long as I take my antinausea drugs on time, I no longer have to throw up. Although chemo kills much more than is good for me, I try to see it as a strange rather than poisonous enemyâone whoâs helping me get better. Itâs my disease and my battle.
These days I study at the hospitalâs medical library rather than at the university. Here I can finally face my greatest fears. I carry a copy of my file everywhere. Every doctor who crosses my path is questioned. My nurses spend their coffee breaks making copies of medical journals for me. The once-alien values on my lab form are now familiar and even have the power to comfort me. I want to know and understand and research everythingâincluding my chances of survival, however crude it may be to see my own mortality translated into statistics. The day that it became clear my tumors were attached only to my lung and not my liver, those chances went up from 15 percent to 70 percent. My first CT scan is in the bag. The number of soaked T-shirts beside my bed has been reduced to zero, the visible âraviolisâ around my lung to three. I feel stronger, less a victim of my illness. Itâs not a reality anymore I canât deal with. So I moved back into my own room. Away from my parentsâ protective bosom, but still within armâs reach.
Â
WEDNESDAY, APRIL 6
M Y FATHER ISNâT THE ONLY one who has
On the scan the abnormalities are not much bigger than a needle point. In the first scan, the largest tumor was the size of a Ping-Pong ball. Now itâs half that. The fact that the tumors are attached to an organ and that that organ is a lung pretty much rules out an operation. That gives me one less weapon to fight with, but thereâs always radiation.
There are three discernible stages of my disease, and Dr. L tells me I fall in the middle category. Not the toughest group, but not the easiest either. Unfortunately, because my disease is so rare, scientists havenât been able to collect much information on the cause or the recovery process. Most believe it to be caused by an abnormality that developed when I was still just an embryo, but no one can tell me why this abnormality has suddenly decided to try and kill me now, twenty-one years later. In any case, all this has led to plenty of discussion among the pathologists, anatomists, and oncologists at my weekly diagnosis sessions. Apparently, this all-star team doesnât always agree, not even on my diagnosis, but Dr. L tells me I donât need to worry about that too much as long as the treatment is working. Which it is.
My age makes my case a little puzzling too. Rhabdomyosarcoma is very much a childrenâs disease. Getting through the treatment will be as tough a battle as fighting my disease. Therefore, my blood values are carefully monitored. Blood transfusions for my low red blood cell count, leukocyte injections for my white blood cells, and thrombocyte transfusions to boost my blood count even further. Low blood counts mean no chemo. In real life, I can see it in my pale skin and lack of energy, my weak immune system and the constant bruises all over my body.
When Dr. L is finished, I walk out of his office and let the tension ease out of me. Even though Iâve been given good news again, Dr. Lâs office will never be a place I can relax.
I can tell the cure is working, also without the scan. My body is getting used to the new drugs and recovering better after each round of chemo. Iâm slowly putting weight back on, and as long as I take my antinausea drugs on time, I no longer have to throw up. Although chemo kills much more than is good for me, I try to see it as a strange rather than poisonous enemyâone whoâs helping me get better. Itâs my disease and my battle.
These days I study at the hospitalâs medical library rather than at the university. Here I can finally face my greatest fears. I carry a copy of my file everywhere. Every doctor who crosses my path is questioned. My nurses spend their coffee breaks making copies of medical journals for me. The once-alien values on my lab form are now familiar and even have the power to comfort me. I want to know and understand and research everythingâincluding my chances of survival, however crude it may be to see my own mortality translated into statistics. The day that it became clear my tumors were attached only to my lung and not my liver, those chances went up from 15 percent to 70 percent. My first CT scan is in the bag. The number of soaked T-shirts beside my bed has been reduced to zero, the visible âraviolisâ around my lung to three. I feel stronger, less a victim of my illness. Itâs not a reality anymore I canât deal with. So I moved back into my own room. Away from my parentsâ protective bosom, but still within armâs reach.
Â
WEDNESDAY, APRIL 6
M Y FATHER ISNâT THE ONLY one who has
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