A Clearer Path ... but NOT to VCU

Wednesday - November 7, 2012

Chasing down the options

Election Day brought results in the morning here in Williamsburg - at least in terms of my pending bone marrow transplant.  My VCU Bone Marrow Transplant Coordinator telephoned with the news that the final word is that I am NOT eligible for the clinical trial.   I confess to some frustration that the VCU BMT team had offered this trial as an option.  I heartily applaud their enthusiasm and their desire to provide a path and treatment option for me.  However, I wish that they had engaged in some serious "close reading" (a focus emphasized by my favorite Comparative Lit instructor) before approaching me and offering this trial as an option.  Kim and I - two laypersons - read the eligibility criteria and surfaced language that clearly excluded me from the trial  -- that is, I have not failed my chemotherapy protocol.  In our BMT meeting ten days ago, I pointed out this specific language to the doctor who was still enthusiastically advocating the trial as a viable option.  When we examined the pesky "and" that was thought to be an "or", he remained optimistic and felt that a wording edit could be quickly engineered.  It turns out that it is not to be.  Our BMT path has run dry in Richmond ....

... and veered north on a path to Johns Hopkins in Baltimore.  My Bone Marrow Transplant Coordinator is now contacting her counterpart at Hopkins to get the ball moving for a haplo transplant, a procedure in which the Baltimore hospital specializes.  The physician we met with at UMD for our second opinion also pointed us towards Hopkins for a haplo BMT.  We have considered this option previously and envisioned that I would simply camp out in Baltimore as needed with Megan (back from California from mid-December until late March) as my companion / caregiver.  Joe and Jonathan seem very far away under this scenario but it would only be for a few months and we have to go where treatment is offered.

I'm still wrapping my head around this narrowing of options.  Thank God Carolyn was here with me or I probably would have given in to more high pulse rates and cortisol flushes.  Joe's support and positivity were conveyed strongly through the phone but still he was on travel - a long way away.  Having Carolyn alongside me was a tremendous salve.  My most immediate thought was:  how do I share the updated information with Jonathan and Megan?  Eventually, I phoned them after their obligations for the day had been completed.  My children are amazing people.  I feel so comforted and happy to know them.  How could I be anything but optimistic?  Even when the path shifts....

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On our way to a wonderful visit and lunch with Sally, we made our first contact with Johns Hopkins.  Very helpful.  Surprisingly quick timetable!  More details to come ....