Fall Festivities

Jeff has neuropathy on various spots on his body from the pre-transplant chemo/radiation but his feet give him the most trouble.  It makes shopping for shoes - and even socks – difficult and causes agony when he has to wear work boots.  From time to time, I wonder aloud whether a podiatrist could help but Jeff is reluctant to add yet another specialist to his repertoire.  So when I learned that the marrow recipient honored at the Gift of Life NJ Walk for Life last month was himself a podiatrist, I thought we had found the perfect authority on the subject!
 

After the walk, we stopped to chat with the man and his wife.  I nudged Jeff and said, “Ask him about neuropathy.” 

The man heard my prompt and, with a look of disgust, remarked, “Yeah, I got it.”

So there you have it.  Some things you just have to live with. 

Jeff's latest spoon design inspired by the Gift of Life logo

The NJ Walk for Life was much, much more relaxing this year than last.  Last year we were anxious and excited to meet Jeff’s blood sister, Nicole.  And Jeff had rehearsed his speech a hundred times although it turned out he didn’t get to deliver it at that event.  This year there was no pressure, just a walk in the park.  It was fun to see another donor and recipient meet and to chat with them.  The young donor, a Jersey boy, had swabbed with his roommate while at college in Israel.  Remarkably BOTH young men ended up as donors!   The recipient’s GVHD was, unfortunately, affecting his muscles and tendons which prevented him from being able to do the walk.  Prior to the event he had written a song for his donor called, “Who are You? Who am I?” which the donor clearly treasured.  There is something about receiving the gift of life that inspires creative expression.

Ruth Miller from Gift of Life arranged for Nicole, Jeff and me to give a Webex presentation for a pharmaceutical company in Northern New Jersey and the UK.  The good folks at Eisai Inc. were interested in the BMT process and wanted the donor, patient and caregiver perspectives.  Our tales - and Ruth’s expert knowledge on the subject - generated some excitement for joining the registry.  Our audience described their company as diverse and since ethnicity matters in HLA typing, this could be a very good thing.   Ruth will invite Eisai to participate in next year’s NJ Walk for Life, too.

The MDS Foundation held its fall MDS Family event in Wynnewood, PA.  Jeff was able to serve as the BMT poster boy for those who are facing the inevitability of transplant.  One woman said she hadn’t yet met an MDS patient who survived transplant and she was relieved to see a success story.  Another family had just seen Mom through breast cancer only to have Dad’s MDS diagnosis follow shortly thereafter.  Jeff liked the guest facilitator, a holistic nurse who emphasized spirituality.  The meeting was restorative for all.  How is it possible to be touched so deeply by people you have only just met?

Oktoberfest at Cannstatter Volksfest Verein in Philadelphia, celebrated every year with my family, has taken on a new purpose for us.  It marks and celebrates Jeff’s survival since his diagnosis four years ago.  This year a wide-eyed Rosie joined the party.  She was fascinated by the dancers and insisted on spending a lot of time on the dance floor herself!  The fun quotient got quite a boost.

Jeff and I celebrated our 35^th Wedding Anniversary quietly.  Another milestone made possible by Nicole.  More and more we see ourselves sharing lots more time together with less and less uncertainty seeping into our thoughts.

Prayers, please, for Brad and Chris who lost their wife/mother to cancer this month.  Debbie, a member of the Morrisville cancer coterie, was a brilliant, joyful woman who often expressed care and concern for Jeff even as she herself was in need of a miracle.