“My Voice” by Ed Duerr

Ed Duerr with his Daughter

My name is Ed Duerr.
I have Non-Hodgkins Lymphoma.
I am a survivor.

Cancer changes your life, and  in January 2009, the life that I had grown accustomed to, was about to come to an abrupt end.  I was diagnosed with cancer, more specifically, Waldenstrom’s Macroglobulinemia, a incurable form of Non-Hodgkins Lymphoma.  After being devastated for a week or two, the natural fighter in me arose.  I fired my oncologist and hired a new one who confirmed the previous diagnosis and told me it was incurable.  “That’s unacceptable” I said.  “You don’t understand”, he said, “it is treatable but we can not cure it at this time.  The best we can do is keep it under control”.  I promptly protested,“I understand that, I just refuse to accept it”.  Sorry, Doc, I am just no damn good at giving up.

I asked him what I needed to do to fight this thing.  After many medical discussions, much research and many family meetings we decided that we were going to try some new combinations of some old drugs at a very low dosages.  First, though, he said that we are going to make sure you are strong enough to take the treatment.  So we assembled a team of specialists – a nutritionist, a naturopath, a psychoneuroimmunologist, and a host of nurses and other medical practitioners and most importantly my friends and family.  I came loaded for bear and I intended to win.  I did not intend to be a survivor.  I intended to be a winner, willing to do whatever it takes to win.  I had no idea how formidable this opponent would be.  I would soon find out just how tough a fight I was in for.

Three weeks after my first visit, we started the first cocktail of chemo.  Two weeks later those drugs nearly killed me, literally.  The worst part was that it almost destroyed my will to fight, but my team and I were not about to let this hideous thing beat me.  I spent 5 days as an inpatient with hypercalcemia (high blood calcium — normal is 8.6-10.4…. at 14 you lapse into a non-recoverable coma and at 15 most people die…I was over 16.3).  Two weeks later they stabilized my blood calcium and got me strong enough to go home for 6 weeks.  After that 6 week break, cocktail #2 started.  In less than 3 doses, I was responding so well, we stopped treatment.  In August 2009 I signed up to do a half marathon (13.1 miles).  On September 21, 2009, I was declared in remission.  I completed my half marathon with my daughter on December 12th.  March 15 2010, I was declared cancer free from an incurable cancer!  “I told you, cancer is unacceptable to me”.  My onc’s response, “you said you would beat this and you did”.   I told him that thanks to an incredible medical team and an amazing support network, yeah we beat this monster!

I have not yet talked about what it was like to fight this disease and, truth be known, the battle was hell.  There was the nausea and fatigue that lasted till just a few days before the net round of chemo.  Constant blood draws and lab work.  At one point they had taken so much blood for lab work that they had to give me 2 units of blood.  I am very grateful for the drugs that were used, but remember something about these drugs.  No matter what the drugs are, chemo is an invasive process that injects you with noxious toxins that are designed for one purpose only – to kill.  It wreaks havoc on your body and screws with your mind and sometimes the effects are permanent.  In my case I have permanent memory impairment as a result of the hypercalcemia and the chemo.  I also still suffer from neuropathy in both feet.

But life goes on and so do I!

I never had any intention to simply survive this disease.  I fully intended to win.  Nothing less was or is acceptable.  All it took was more than I thought I had, but it took everything that I had and then some.  It took absolute conviction,  nutritional rehabilitation, lifestyle changes, the right Oncology team and a support network of family and friends.  I discovered what a team like that can do and it is nothing short of inspiring.  We won the battle but the war may not be over yet.

Like I said, I am just no damn good at giving up!