Thursday, March 17, 2011
Good News Among World Tragedy
My heart grows heavier every day as I watch the events unfold in Japan. Relief efforts become more and more difficult because of the radiation exposure, and people can't get the supplies and medical attention they need. The younger generations face a significant risk in years to come of thyroid cancer and, you guessed it, leukemia. My prayers are with all the people of Japan, but especially the 50 nuclear power plant workers who are trying to prevent further disaster. They are the martyrs in this tragedy.
It's hard to celebrate happy things when so many people are suffering. But I do have reason to celebrate. My bone marrow biopsy showed "no evidence of residual leukemia," and the chromosome analysis (cytogenetics) shows "a normal male donor" in all cells analyzed. This means that I am in complete remission and the report could not have been better! My relief is indescribable. When I was first diagnosed, my biopsies revealed an abnormal chromosome, the inversion 16 or 16i. This was seen as a "favorable" marker because people with AML who had 16i did well long term, once in remission. I was an exception, as usual, and I relapsed. But when any abnormalities show up, they indicate the presence of leukemia. I was very happy to read on the report, "no consistent numerical or structural chromosome abnormalities were observed." Also, another test, called a Chimerism, showed that in the two of the ten blood lines where leukemia shows up (the white cells and the lymphocytes) my bone marrow is 99% converted to a male donor.
As with any transplant patient with an unrelated donor, I will be at highest risk for relapse for the first two years, then my chances of being completely cured will go way up. It's possible that some rogue leukemia cells escaped the chemotherapy and radiation, and that my new stem cells don't find them to kill them. But because I've had two bouts of GVHD (graft v. host disease), and we know that the stem cells are fighting me, we can assume that graph v. tumor is also taking place, and that my new immune system would also kill any leukemia cells it finds.
My other good news is that the CMV virus, for which I've been treated since late December, seems to be under control, finally. All medications for this virus are very intense and have terrible side effects (blasting headaches, kidney damage, etc.), but I'm now on pills that I'm tolerating and are working. In fact, since I don't need long IV infusions of these creepy drugs, the PICC line was taken out of my arm and I no longer have a central line for the first time since November. I'm free! This makes me feel less like a cancer patient and more like a regular person.
I'll be completely off the steroids, and hopefully through with the CMV pills, by the beginning of April and by mid April I should feel physically stronger and able to gain some weight. The progress that most transplant patients experience by three months will take me about five, but with the overall transplant a success so far, I am grateful to be here and to be turning a corner. I'm looking forward to the next phase of recovery -- physical therapy to regain my muscles, eating non-stop to achieve a three digit weight, taking walks, and building my stamina to return to work.
Cancer is a tough war to fight. This has been an especially tough tour of duty and it's not over yet. The battle fatigue is difficult for an impatient person like me. Sometimes, when I think of all the phases of fighting I've faced over the past ten years, I am reminded of the soldiers who found themselves under the stop-loss policy in the Iraq and Afghanistan wars [the involuntary extension of a soldier's active duty in order to send them back to the front lines over and over again]. I don't mean to compare the two experiences, but the concept struck a nerve.
Overall, I'm optimistic about my future. I've seen enough of the front lines. Yes, technically I will always have metastasized breast cancer, although ACCB is not really breast cancer. But with Dr. Georgiades at Johns Hopkins and his radiofrequency ablation magic, we'll handle that if necessary. No problem. I'm committed to living a very long life and dying of something other than cancer.
I send my thoughts and prayers out to those in Japan fighting their own horrible war. They too are on the front lines, battle fatigued and scared. I find comfort, gratitude and respect for the good samaritans there are helping people they don't even know in any way that they can. I'm also glad to see relief pouring in from so many counties. Now is the time, as with many times in the recent past, for generosity, compassion and recognition of all the good things we take for granted.
In love and faith,
Kathy
CANcer + HEALth = CAN HEAL
It's hard to celebrate happy things when so many people are suffering. But I do have reason to celebrate. My bone marrow biopsy showed "no evidence of residual leukemia," and the chromosome analysis (cytogenetics) shows "a normal male donor" in all cells analyzed. This means that I am in complete remission and the report could not have been better! My relief is indescribable. When I was first diagnosed, my biopsies revealed an abnormal chromosome, the inversion 16 or 16i. This was seen as a "favorable" marker because people with AML who had 16i did well long term, once in remission. I was an exception, as usual, and I relapsed. But when any abnormalities show up, they indicate the presence of leukemia. I was very happy to read on the report, "no consistent numerical or structural chromosome abnormalities were observed." Also, another test, called a Chimerism, showed that in the two of the ten blood lines where leukemia shows up (the white cells and the lymphocytes) my bone marrow is 99% converted to a male donor.
As with any transplant patient with an unrelated donor, I will be at highest risk for relapse for the first two years, then my chances of being completely cured will go way up. It's possible that some rogue leukemia cells escaped the chemotherapy and radiation, and that my new stem cells don't find them to kill them. But because I've had two bouts of GVHD (graft v. host disease), and we know that the stem cells are fighting me, we can assume that graph v. tumor is also taking place, and that my new immune system would also kill any leukemia cells it finds.
My other good news is that the CMV virus, for which I've been treated since late December, seems to be under control, finally. All medications for this virus are very intense and have terrible side effects (blasting headaches, kidney damage, etc.), but I'm now on pills that I'm tolerating and are working. In fact, since I don't need long IV infusions of these creepy drugs, the PICC line was taken out of my arm and I no longer have a central line for the first time since November. I'm free! This makes me feel less like a cancer patient and more like a regular person.
I'll be completely off the steroids, and hopefully through with the CMV pills, by the beginning of April and by mid April I should feel physically stronger and able to gain some weight. The progress that most transplant patients experience by three months will take me about five, but with the overall transplant a success so far, I am grateful to be here and to be turning a corner. I'm looking forward to the next phase of recovery -- physical therapy to regain my muscles, eating non-stop to achieve a three digit weight, taking walks, and building my stamina to return to work.
Cancer is a tough war to fight. This has been an especially tough tour of duty and it's not over yet. The battle fatigue is difficult for an impatient person like me. Sometimes, when I think of all the phases of fighting I've faced over the past ten years, I am reminded of the soldiers who found themselves under the stop-loss policy in the Iraq and Afghanistan wars [the involuntary extension of a soldier's active duty in order to send them back to the front lines over and over again]. I don't mean to compare the two experiences, but the concept struck a nerve.
Overall, I'm optimistic about my future. I've seen enough of the front lines. Yes, technically I will always have metastasized breast cancer, although ACCB is not really breast cancer. But with Dr. Georgiades at Johns Hopkins and his radiofrequency ablation magic, we'll handle that if necessary. No problem. I'm committed to living a very long life and dying of something other than cancer.
I send my thoughts and prayers out to those in Japan fighting their own horrible war. They too are on the front lines, battle fatigued and scared. I find comfort, gratitude and respect for the good samaritans there are helping people they don't even know in any way that they can. I'm also glad to see relief pouring in from so many counties. Now is the time, as with many times in the recent past, for generosity, compassion and recognition of all the good things we take for granted.
In love and faith,
Kathy
CANcer + HEALth = CAN HEAL
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