Sunday, May 4, 2008

CLL Redux 2 Years Later

I keep returning to early summer, 2006 and the path I have walked since then. It was then that Dr. Miller at Beth Israel/Deaconess Hospital asserted with professional confidence -- no, with arrogance. With definitiveness. With bravado. That I have chronic lymphocytic leukemia. There were no other answers for the state of my bone marrow at that time.

And the result? I became sick. Sicker than I was already. I became a patient. A leukemia patient. I spent the next three or four months: out of work, weekly blood draws and hem/onc appointments. Feeling bad. Worse with prednisone withdrawal. Hard to tell the difference between the disease and the treatment and the withdrawal symptoms.
I didn't know anyone with leukemia -- well, I didn't know any living adult with leukemia. I knew of the granddaughter of a co-worker who had an acute leukemia diagnosed at only 18 months. I had a friend who died -- probably 35 years ago -- from adult onset acute leukemia. But that is it. So I heard the words. And then I slipped down on a deep dark whole. When I emerged, I was a 'patient'. I now had assumed new labels to describe me: 'Sick'. 'Cancer/Leukemia Victim'. The diagnosis put me through a whole host of emotional changes: I was sick;I felt sick. I could name my malady and it was frightening: I felt I would die young: I had bad 'markers'. I was 'fragile' and prone to infection. I worried about being in school with young disabled kids.

Then I started to read the words of other CLL patients: the scholarly words of people like Chaya (CLL Topics) and David ( Brilliant minds. Important stuff. I joined several 'boards" --- like the "digest" "cllforum" and "cllcfriends". I googled. I scoured the literature. I understood very little; my right brain rebelled mightily at these scientific, medical terms and concepts. But I persisted.
And then spring came. 2007. I finally began to understand some of the words and concepts that had evaded me previously. I read my labs and compared them to the typical 'cll-er'; I found no match.
Did I have CLL?
I posed this question to bigger lights and brighter minds than I will ever be: Dr. Terry Hamblin, for example, who said that it was not unusual for early stage/low risk CLL that presents with autoimmune hemolytic anemia to be knocked back by high doses of prednisone. And then, my doctor, Elizabeth Bengston at Dartmouth Hitchcock Medical Center did a re-take of one of the diagnostic tests (flow cytometry) and found no CLL in peripheral blood.
I did have a host of autoimmune issues that had plagued me for years; I had begun to attribute them to the CLL. But in summer 2007 these were 'knocked back' by entacort and prednisone and colchicine thanks to Dr. Rigby at Dartmouth who was unafraid to name my other beast "Behcet's Disease".

So, where am I now nearly two years since the Beth Israel diagnosis? And what has the diagnosis meant to me?
Well, first, it gave me a new identity: patient. It labelled me 'sick'. But I am not these words. And it took nearly two years to get back to me: I am Pat. Spiller. Woman. Grandmother. Daughter. Mother. Friend. Advocate. Artist.
I no longer wait for the other disease-shoe to drop. I no longer read the current research; I no longer keep up-to-date on the newest and best CLL treatment methodologies. I don't even think of myself as someone waiting for the beast to strike again.
I don't even know that it will.
I don't know.
Who can say?
But I ask: could Dr. Miller have given me the CLL news differently? What if he spoke slowly. What if he hadn't been half-in and half-out the door when he told me? Would it have made a difference to my frame of mind, if he had used different words. Would I then have come to use other words about myself and my medical condition? Would it have taken two years to come around to feeling whole and healthy again?