To imply multiple myeloma is manageable indefinitely disingenuous

A number of readers chimed in about yesterday’s post.  I don’t know if Tom Brokaw understands the ins-and-outs of a typical myeloma patient’s disease progression.  Maybe he does.  Regardless, the attention his book is already bringing to our cancer is a good thing.  I doubt its his fault that writers unfamiliar with myeloma make it seem less daunting than it is.

Feel good stories are important, but in this case they cloud the urgency that so many feel while trying to stay alive.

One of our regular readers left an insightful comment yesterday:

“To see many cancer patients and especially celebrities write books like their battle is over really illustrates how little they understand their disease. I often see many celebrities writing about their battle with cancer and how they beat cancer. Then a few years later you hear that they passed away from that disease. No matter what form of cancer you have the battle is never over.”

It reminded me of a short conversation I had with Pat Williams at this year’s Beach Party.  Pat is a legendary NBA executive and fellow myeloma survivor.  He was our keynote speaker at this year’s event.

Yes, Pat wrote an inspirational book about his battle with multiple myeloma shortly after his diagnosis,  The Mission is Remission: Hope for Battling Cancer.  He’s a high motor, over-the-top positive guy, so its not surprising that his book reflects his personality.  I remember speaking with him several times after he was first diagnosed.  Pat was filled with the type of “I can beat it bravado” described above.

A few moments before he was scheduled to speak, Pat grabbed my arm to ask a question about which myeloma drugs work best after drugs like Revlimid and Velcade stop working.  It had been over four years since he was diagnosed.  The look in his eyes told me he get’s it.

To be fair, it isn’t just celebrities.  I can’t count the number of myeloma patients in the midst of their “honeymoon” first remission that imply they’ve beaten it.  I’ve learned to to try and rain on their parade; chances are the heavens will open up soon enough.

We all hope we’ll be one of the special ones that doesn’t relapse.  The true test comes for those of us when the illusion is inevitably shattered.

I’ve noticed that I’ve embraced denial lately.  I keep kicking the decision-making-can-down-the-road as I spin the roulette wheel to help decide which last ditch therapy I should embrace.  My denial lasts for the better part of a weekend day.  That form of self protection is a lot different than the honeymoon remission bubble many experience up front.

No harm done unless someone is harping to the media about how multiple myeloma is manageable.  As so many readers wrote, it may be manageable for a while, but for most myeloma wins in the end.

But for most of us that’s not today!  So try a small dose of denial so you can feel good and keep smiling!  Pat

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