Wednesday, August 7, 2013

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.

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Anonymous Anonymous said...

This really resonates. I admire both your openness and your understanding with others who are less comfortable going public.

I agree with your emphasis on creating greater awareness. In that vein, have you considered integrating your blog with other social media? It would be great if your readers could like your blog on Facebook, retweet posts on Twitter, publicly recommend your blog on Google+ and/or email your URL at the touch of a button to those who could benefit from reading it.

In any case, it's obvious from various posts that through your outreach you have already lightened the load for many others who are fighting leukemia.

Karen F.

August 7, 2013 at 11:33 PM  
Anonymous Anonymous said...

The problem often lies in what you must reveal due to medical appointments. I went through a clinical trial and never missed a day of work except for days when I had infusions. I elected to tell a very small number of people who were in my direct line of reporting so they would understand my need to specify firm dates out of the office. Unfortunately a couple of those people chose to tell others out of "sympathy." Within a few days, I was inundated with cancer doe eyes, the sorrowful misty look one gives when talking about Old Yeller. Needless to say I was irate over my supervisors revealing a personal medical matter. Cancer puts you in the lineup of those due to checkout next. You are denied opportunities, treated as a lesser entity and suffocated by the premature sad news of your demise. I managed to set things straight by doing my job at a high level of productivity, much to the dismay and even annoyance of my family. But you can't show fatigue or you are out of the game. Some people started talking about my retirement, something I neither wanted nor could afford due to health insurance issues. We all have different circumstances and needs, but I would opt for silence.

August 8, 2013 at 6:23 PM  
Anonymous Anonymous said...

Only difference in his, is that you could tell by looking at him that something was wrong. I thought cancer because a man with a thoroughly healthy head of hair suddendly goes bald and he was a very heavy set man as well and had lost a considerable amount of weight. They may not have known exactly what was wrong, but they knew something was going on. Perhaps it was the treatment he chose, who knows?

August 12, 2013 at 1:00 PM  
Anonymous Anonymous said...

I have had CLL for several years with all of my markers being the good ones. I have been asymtamatic this entire time and have kept my little secret from all but my wife and medical pros I might see such a a dentist or other unrelated to the CLL. My thinking is why trouble your kids and friends if nothing is going to happen in the short term. There would be plenty of time to deal with this if sometime in the future things change. Having had surgery for PCA I had no problem dispensing info and helping those faced with a similar condition. There was no choice there since I did have about 3 weeks total downtime before I resumed my regular schedule. When some form of leukemia or lymphoma comes up among people I know I will try to help with info that I might have available since I have done quite a bit of research and try to keep on top of the latest breakthroughs. I play off the knowledge by saying " oh I knew someone with a similar problem" and that seems to satisfy people. I sometimes mention to my wife that it is strange to be keeping this from everyone but we just chuckle and move on. That of course is the advantage of "smoldering " CLL rather than the more virilent forms, as you have often said this is not a one size fits all type of disease.

August 19, 2013 at 7:26 PM  
Blogger Unknown said...

Oh! That is rally sad to hear about talented young's that leave us earlier. I too had a friend (age 27) who was affected with cancer and passed away after he had chemotherapy and hair transplant. he was such a h=good singer and even got a chance to sing in a reality show. but in vain, the disease had already invaded him badly!

September 1, 2013 at 4:53 PM  

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