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,


Saturday, March 5, 2011

Didn't Expect That Detour

Life in Transplant World can be such an adventure.  While trying to manage recovery, GVHD, the viruses and infections that can pop up at anytime, some random thing can smack you right in the gut.  And it did.  The day after I wrote the last post, a Monday, I went in for a treatment for the CMV virus.  Having received two of the three required negative test results to stamp down this beast, I was hopeful that the new GVHD flare up wouldn't re-ignite the virus and that this would be my last treatment.  During the five hour infusion, I developed stomach pain that got worse as the day went on.  I was so sick by the time I left, I was given two choices:  get an IV of anti-nausea medication to get me home so that I could take pain killers, or go to the ER.  I elected option one.  That was a mistake.  I made it 2/3 of the way home and had to pull over.  If Dave and Betty hadn't retrieved me from the Parkway, I would probably still be there.  I was sick on and off the next day, and by Wednesday morning, I had pretty much collapsed.  Again, Betty came to my rescue and drove me to the ER.

[For those TMI (too much information) readers, you may want to skip this next part.]  A CT scan of my belly showed that I had a small bowel obstruction that was unrelated to the transplant.  It takes a lot to render me speechless, but that sure did.  A what?  How?  Apparently, this is a standard risk of any abdominal surgery.  No one knows how scar tissue will be formed, and sometimes part of the bowel adheres to the scar tissue causing it to twist.  It can happen years later.  One doctor told me that his 75 year old father had a small bowel obstruction from a surgery that he had when he was 17.  I've had one open and two laparoscopic abdominal surgeries, and one of them probably caused the obstruction.  But on Day 100, when I was supposed to be celebrating milestones in my recovery?  At least it explained why I had been having such bad stomach pain whenever I ate for the last two months. 

I was admitted to the hospital and told that inserting a nasogastric (NG) tube usually does the trick.  It's everything its name implies and extremely uncomfortable.  If that didn't work, they would have to operate, which would then create more scar tissue, increasing the risk of this happening again (not to mention the risks associated with very low blood counts and a compromised immune system).  I was in the hospital for four days, unable to eat or drink.  Thankfully, the terrible NG tube worked and the pain and obstruction are gone.  I'm very happy to be able to eat again, especially since I now weigh 88 pounds.  (I'm eating as much as I can, but the steroids work against me.)  Mary dropped everything and drove from Pittsburgh to help me through this ordeal, as she always does when I'm having a crisis.  I honestly don't know what I would do without her. 

This was certainly an unexpected turn of events that surprised everyone, and I must say, led to some of the most terrible moments of this entire process.  But it's over, hopefully not to be repeated.  As predicted, the increased steroids to treat the second round of GVHD have turned my muscles to mush and lowered my counts.  Also predicted, this brought back the CMV virus, for which I am still being treated.  I feel like I'm swimming upstream, but I have to focus on the passage of time.  I am 110 days old, and my new immune system is learning its way around its new home.  In terms of the transplant, my doctors say that I'm doing great.  I had my twelfth bone marrow biopsy, and I should get the final results in about a week.  Thankfully, this was the last planned biopsy, so my poor hips can finally heal from all those corkscrew invasions.  I'm slowly coming off the steroids, which will allow my body to heal itself from viruses and bring my counts back up.  Although I thought that March was to be my month to gain weight and build my body back, it looks like it might be April.  As long as I get there, I'll be happy and grateful.

I've been to a couple of support groups this week, and again, I'm reminded that there are those that have endured much worse complications than mine.  I really do see a light at the end of this tunnel, and when I finally see the sun (well, I'll have to wear a lot of sun block), I'm busting back into life!