May 24 Post Transplant 170 Days Quality of Life

Super Moon over Wenatchee, WA  2012

I have mentioned in an earlier blog I was reading  The Emperor of all Maladies, a book on the history of oncology and the treatment of cancer.  The book mentions in cancer treament only for the last fifty years that consideration of the patient's quality of life may be more important than the cure.  Radical surgeries and sustained chemo therapies may win the battle against cancer, but with side effects of weakness, deformity, special diets and inability to care for themselves to the patient.  Subsequent depression of the patient can send them into a tailspin where they stop trying and give up.  Decisions by medical professionals may be very difficult.  Doctors now have a tool to assess the health of older patients called the comprehensive geriatric assessment (CGA).  The CGA evaluates multiple aspects, such as functional status, multiple medical issues, cognition, psychological state, social support, nutritional status, and current medications.  I remember when I was being prepared for my heart transplant in the summer of 2009, there was a fair amount of screening to see if I would survive not only the transplant, but if I was fit both physically and mentally to go through the second phase, a stem cell transplant and the chemotherapy to treat my disease.  Without trying to impress the medical staff, I had a lot of photos of my family in the room, cards from friends plastered on a bulletin board, a poster from the Berlin Marathon I ran in 1998, plus my wife was with me nearly the entire time.  I had no other health issues other than the fact I had this terrible disease, AL Amyloidosis that was destroying my heart.  So I was a good candidate for a heart transplant and to go through the second phase of the treatment to destroy the defective plasma cells in my bone marrow.  I was fortunate that the first phase went so well and my new heart has been successfully transplanted with no issues of rejection.  The second phase to deal with the disease has been good but not complete.  Statistically, I am better than most but I still struggle with the disease and I live with the impacts of this daily,  which brings us back to the issue at hand, quality of life.  Today I live with damage to my balance (hypotension or low blood pressure) facial nerve damage, neuropathy in feet and digestive issues and I bruise very easily (damage to vascular system).  The two stem cell transplants, because of the high dose of chemo, have pushed back my red blood cell count to where I live with anemia and thus am tired and lack energy.  My immune system is weak though with time will grow stronger.  The medications I am on now affect my ability to regain strength and cause low bone density issues.  So quality of life is not what it used to be.  How much of this can I attribute to getting older and how much to the disease?  I was physically in pretty good condition before I got “AL Amy”.  I have had to make some adjustments in what I expect from each day.  Today I get up and take care of myself.  I set a time that I want to start each day as if I were out the door going to work.  I have a set of tasks that I set out for each week.  I chase down medical insurance issues, research about my disease, work on my family history and try to read.  A friend told me to start identifying the birds in the yard.  So I have changed my focus as a biologist from things that swim to things that fly.  I never knew that identifying a sparrow could be so tricky.  

So how is the quality of life?  I wish physically I had half the strength I had before I got this.  But all in all I am doing okay with everything else.  People have said life is what you make of it.  There are some events that we have no control of.  We go on.  We are limited physically; but mentally we find ways to continue to keep moving.  I like what Edward Kennedy said in his book, True Compass; A Memoir, “I am a realist, and I have heard bad news in my life.  I don’t expect or need to be treated with kid gloves.  But I do believe in hope.  And I believe that approaching adversity with a positive attitude at least gives you a chance for success.  Approaching it with a defeatist attitude predestines the outcome: defeat.”  So we move ahead.