Sunday, December 12, 2010

A Message from Steve K to a newbie with CLL

I wish I had written this, but it is too good not to share. It is part of a longer letter from the latest update in http://updates.clltopics.org/

Chaya's website is a must read for anyone with CLL and Steve's advice is good for all of us with leukemia or cancer or not.

I once heard a rabbi with non-Hodgkin's Lymphoma say we are all in remission, just some of know it.

This life with end, but it hasn't yet if you are reading this.

To life. Thanks Steve

Here's what he had to say:

I consider myself lucky. The biggest challenge I faced after being diagnosed with CLL was coming to grips with the fact that, like every human before me, I will not be immortal. I was 45 when I was diagnosed with CLL. At that time it was easy to get trapped into playing the “will I make it to x event” mind game. X was defined by any significant family life event that might occur at some distant point in the future. Eventually I realized it was a game that could not be won. While it was important to make time to grieve for the loss of immortality, experience the fear of the diagnosis of cancer, and express rage and every other emotion that goes along with being a cancer patient, there are only so many hours in the day. If I spent too much time concerned with what might happen in the future, I could not feel, see, and experience the joy, love, happiness, and life that surrounded me each day. It helped me to see that happiness is a way of life that I can choose rather than a goal to achieve at the end of a long life. If I could find a little love and happiness each day, I would be happy and at peace at the end of the journey, no matter where it took me or how long it lasted.

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2 Comments:

Anonymous Anonymous said...

I was diagnosed at 48 and CLL has pretty much ruined much of my life. I felt I could not make any long-term plans as I could die with any cold or sore throat. I could not travel to second- or third-world countries. I could not be in a remote area for more than a few days. No insurance would cover me. Long-term and life insurance was beyond me. I could not provide for my family.

I had to retire early, because if I died while still working, my family would get nothing but $2,000. If I died while retired, they would get part of my pension for as long as they lived.

It's one thing to get CLL at 68, the average age of onset; it's quite another to get it in one's forties.

And I know that I'm not alone, other cancers do the same thing, take years away from people. Look at the children who die from cancer. It's even worse for them.

We probably spend more on watching sports in this country than on cancer research.

Whoopie.

December 13, 2010 at 8:03 AM  
Blogger Brian Koffman said...

To Diagnosed at 48

As you so clearly state CLL stinks Cancer stinks. And it reckless and indiscriminate and unfair.
You point out all the financial woes that CLL brings to the forefront and they are very real. Facing our own mortality is always a challenge, but one I would have preferred to postponed to my 70s or 80s, but I had no choice. I am fighting to live, but I am aware of the odds. Finally the issue if how society spends its money. We as a part of the cancer survivor community, need to appeal to the money spending public for our share of the dollars, competing with TV and sports and the latest electronics. We have to give people something that makes them feel good about the money they spend on saving us. We have to compete for their dollars.
Stay strong. We are all in this together/

Brian

December 13, 2010 at 11:59 AM  

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