Cancer Does Not Define or Limit Us

I read this obituary notice today and it struck a note of defiance and wisdom that I wanted to share:

YAKIMA - “When you write my obituary, do not say I fought a courageous battle with cancer.”

That was the repeated demand made by Dave Clark, who was diagnosed in the 1980’s with Chronic Lymphatic Leukemia (CLL). He wasn’t joking. For once. He nevertheless fought the CLL successfully for more than 25 years.

David Bruce Clark would have completed his 68th year on Sunday, October 13, but passed away the day before on Saturday, October 12, 2013 in a Yakima hospital."

We are all much more than our cancers. When we are remembered, and more importantly, as we walk though our lives, we want to be recognized as life partners and lovers, as parents and children, as family, as friends, as co-workers, as neighbors, as congregants, as citizens, as adventurers and travelers, as helpers, as confidantes, as advisors, as advocates, as teachers, as writers and readers, as speakers and listeners, as sharers, as jokesters and musicians and artists, as the friendly stranger, as the people we are are, and not the mutant clone that wants to take us down.

As did Mr. Clark's family writing his obituary, it is OK to mention our cancer battles, especially if others can learn from our struggles, but I would agree with the late Mr. Clark and so many other patient advocates that came before us fighting their varied chronic morbid diseases, please leave out the words courageous and inspirational. It is what we must do. It is not as if we have a choice of diagnosis.

Cancer is a real and daily part of our lives.

But cancer does nor define or limit us. Never will.

George Duke Dies of CLL and None of his Fans Knew of the Battle until his Obituary

"Jazz, funk and soul keyboard maestro George Duke (pictured) passed away at the age of 67. The musician reportedly battled chronic lymphocytic leukemia, according to his record label, Concord Music Group." says a score of press releases.

I am  sadden by the loss of this great musician at a relatively young age, and I send my condolences to his friends and his family.

This is the first I heard that he had CLL. I totally respect his decision not to share his struggles.


"He was battling and being treated for chronic lymphocytic leukemia (CLL)." is the only clue we have. 

Was his end a complication of his treatment?  The press release hints at that. Or maybe not.


I wonder what therapies he accessed? Was a clinical trial part of his path? Did he try any of the new small molecules or mAbs? Was he cared for by a CLL expert? 

We will never know.

When I hear, again  and again of a TV or music or movie star who dies of CLL, I really do respect and understand their decision to hide their disease from their fans, and often I am sure from most of their colleagues. Might lose work if someone knew that you had cancer and the entertainment and many other business are very competitive and very phobic about any illness.  And besides, it's about the art, not the cancer.

Many hide CLL simply because they can. 

Most therapies are outpatient. Surgery is almost never indicated (maybe a rare lymph node biopsy or a splenectomy for intractable AIHA or  ITP). We don't generally lose our hair or drastically drop our weight or even look much like a cancer patient is "supposed to look."

It is easy to hide CLL to very near the end.

And it is going to get easier and easier with the new oral drugs in the pipelines. 

CLL as a non-event!

We are not quite there yet, but it may be becoming less and less of a visible and burdensome disease.

Easy to hide and getting easier.

But is it a good idea?

Several positives. 

Hiding our CLL focuses our lives and our relationships on topics other than our cancer. 

It forces us to compete in work and play without playing the "cancer card" for sympathy and a leg up.

We spare family and friends worry and concern that is often needless, especially if we have very indolent disease.

Those are all good things.

Several negatives. 

We miss the support and knowledge of others who might be able to help us and whom we might help by sharing out experience. It's a give and take that only comes from sharing our truths.

We don't expand the general awareness in the community of the gravity of the disease, the need for more research (and funding) for the  promising new and improved treatments, and despite our best efforts, the human toll  of our killer. We are competing for scare resources with much more visible and active cancer advocacy organizations. 

We deny family and friends a chance to support and care for us.

We deny a part (but not nearly the whole) of who we are, when we don't share the raw truth of our illness.

Those are all bad things.

For each of us, we must decide whether to come out of the CLL closet. 

Just as in treatment, there is no one size fits all in the world of CLL.

I understand and respect George's decision to play his cards close to the chest.

I have chosen to play mine in the public eye.