Sunday, June 25, 2017

You can Run but you can't Hide

Anyone who know me knows that running has become an important part of my life.   It’s what helped get me into and pay for college, kept me somewhat sane while working long hours and helping to raise 4 children.   It gave me a way to connect with my children (there is nothing like sharing a run with your kids), helped me deal with losing one, has been the focus of our charity to help others and it was the early warning that saved my life when I got cancer.    Getting back to running the Boston Marathon also served as a goal to help me focus and fight through the 6 months of cancer treatment.    In retrospect, I guess you have to be a few sandwiches short of a picnic to pick that as your goal.  I hear crazy is the new sane.

Two months after the last chemo treatment I was able to start running again and 2 months after that (Dec. of 2016) I began training again to get to the Boston Marathon.    Looking back, the whole idea of running a marathon (especially Boston) 8 months after chemo and while getting bone marrow biopsies every couple of months seems totally unrealistic.    By the time I started training, registration for the race was closed, I didn’t have a number to get in, I only had 4 months to get ready and my blood counts still hadn’t fully recovered.   In my myopically focused mind, those were all minor issues.  I had beat cancer and all other obstacles seemed trivial. 
Those of you that have followed my blogs over the winter know the rest of the story.   Help from family and friends and divine intervention got me trained up, got me a number, got me to the starting line and helped me complete the marathon.    What was not part of the story is that my blood count recovery peaked just before the marathon and has been dropping ever since.   A biopsy in mid-May still shows no sign of the disease in the blood but the genomic tests (see last month’s blog for details) continue to show signs the disease is coming back.    By mid-June my white blood cell count was half the April count (1.6K…normal is 4- 10K) and my neutrophils (white blood cells that protect you from infection) were at 200 (normal range is 1800 -7900).    Platelets (that help your blood clot) were at 18K (normal is 150-450K) causing a quick trip to the vampire store (blood bank) for a transfusion.

This week we started on a 3-4 month chemo treatment called hypomethylation.   The goal is to slow down the generation of bad cells and strengthen the immune system so that we can do a Stem Cell Transplant (also called a bone marrow transplant) in the fall.    Each hypomethylation treatment is 5 consecutive days of chemo followed by three weeks of transfusions, isolation and recovery.
This week has gone pretty well, other than being stabbed and jabbed more times than the shower scene in Psycho, and developing a bad case of what I call sleep “napnea” (sitting for more than 2 minutes is an invitation for a nap).     Nausea has been manageable and so far, no mouth sores, nose bleeds or rashes.    Running a few miles has me puffing like a steam engine.    Hard to believe two months ago I could run 26 miles and today I have trouble running 2-3.

So for now, life is again on hold.  From all accounts recovery from the Stem Cell Transplant will be 6 months to a year depending on the auto-immune reaction to the new stem cells.   They tell me if my donor is female my new cells will be female.   Guess I’ll be getting in touch with my softer side and finally have an urge to go shopping.  Pam will be thrilled.

Next month, more details on what’s ahead with the transplant.