Monday, October 3, 2016

A Three-Legged Marathon

"We take the hill for a better view of the next hill and the gear we'll need to take it as well."
~ Pamela King

It's taken a few days of recuperation and this message from Pam to realize that, though our trip to MD Anderson was a challenge, it was the first hill and we took it.

At times, it felt like a mountain.  Physically - just getting to Houston from our small community in Utah took almost 10 hours. Pushing John's wheelchair across the walkway between our hotel and the main building, and in and out of elevators, and up and down corridors was exhausting. For John, being poked and prodded, having another bone marrow biopsy, another blood transfusion took their toll.

And then emotionally - waiting for doctors, waiting for lab results, waiting for a glimmer of hope.   All the time surrounded by others in waiting.  This time we were struck by the number of young patients, in their 20's and 30's.  Surrounded by an epidemic of cancer.

But along the way the glimmers appeared, what Pam calls morsels of hope.  In the kindness of strangers who pushed the wheelchair up ramps I couldn't manage or who went out of their way to open doors with card passes we didn't have.  In the consideration and professionalism of every person we met, from housekeeper to waitresses to clerks and ancillary personnel.  We always were treated with dignity and respect. And in the courage, strength, and determination we saw exhibited day in and day out.

Two special moments stand out.  The first, when we met with the physician who gave John his stem cell transplant 11 years ago.  In our past experience, he was cordial and the ultimate professional, perhaps a bit contained.  This visit, he shared a different and more compassionate side of his personality, touching us both when, as we left, he reached over, placed his hand on John's shoulder and said, "Remember, you're tough."

The second moment, on our last day, a follow-up visit with the hematologist to hear the results of the bone marrow biopsy.  She had already confirmed the original diagnosis - Therapy Related MDS - and was leaning toward the same prognosis of six months to a year.  She had agreed with the proposed treatment.  So, when she arrived with a big smile, I dared to hope there could be some good news, any good news.  

I think she was as happy to give the news as we were to receive it.The bone marrow results indicated the disease is not as aggressive as originally thought.  The prognosis - two to two plus years.  Enough time for better clinical trials.  Enough time for breakthrough treatments to surface.  

So, the next hill is before us. John is in the middle of his first treatment cycle and so far, so good.  I am in the middle of researching the gear we need to take the hill.   How to detoxify our environment, as infections could be catastrophic.  How to reduce salt and sugar in our diet. How to enroll him in drinking more water.  What to do in case of an emergency.  How to pace ourselves - for this is a marathon, not a sprint!  A three-legged marathon.

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