The Garden Path Leads to Baltimore

Thursday - November 15, 2012

 Massachusetts General's algorithm to select donors for patients w/o HLA-matched sibling

So yesterday heralded a shift in attention and treatment from Richmond to Baltimore.  I am still somewhat caught between two medical centers and two oncologists.  The handoff has not yet been made effective and I will be meeting with Dr. Perkins tomorrow at VCU to review last week's MRI and to have a Rituxan infusion in preparation for a Nov. 24 VCU hospitalization for high-dose methotrexate #3.  In between these next two VCU events, I meet with Dr. Ambinder at Hopkins to review my cancer, treatment to date, and a pending haplo transplant. At this Nov. 23 meeting, we should get a clearer idea about schedule and specific next steps.  Hopkins is in the forefront of haploidentical treatment in the U.S.  This transplant is a type of allogeneic BMT that uses a half-match rather than a full-match donor.  Either Jonathan or Megan will be my half-match.  They both are 4 of 6 allele matches and further analysis will determine who has the best profile for transplant in terms of latent viruses that might prove dangerous in a foreign system (mine).  Yes, the survival rates of an allo transplant - let alone a haplo transplant - set my teeth on edge but medical consensus is that haplo is my best option for long-term outcome.  Megan explains the procedure in more detail on her blog. Hallelujah for Hopkins letting me through the door and for my family providing me the logistical and emotional support to make it happen!

Tomorrow's VCU appointment has me in a less-than-sanguine state.  I still feel full of energy and asymptomatic but any time that I come face to face with an MRI report (or biopsy or scan report), I never take anything for granted and gird myself for less than perfect news. Joe cannot come with me tomorrow but Jonathan is coming home from VA Tech for Thanksgiving break sometime in the next few days and we may in fact meet up at Dalton tomorrow for my meeting with the oncologist.  I always appreciate a supportive presence during these meetings.  In April, those initial phone calls pointing towards lymphoma were delivered to me in my classroom after school.  I remember returning the call to VCU's head of internal medicine as I sat at my guided reading table with the classroom lights off because of my migraine and one eye patched to allow me to see without double vision.  When he told me that the CT scans showed inflamed lymph nodes, indicated lymphoma, and that he had scheduled a surgical biopsy, I discovered that I was not unhappy to be alone to process the information... before I phoned Joe ... before we told the children....  "You seem very calm," I remember Dr. Edmund said at one point.  I replied that I thought I would only be really upset if I could have acted sooner; he kindly replied that I had certainly been aggressive in seeking a diagnosis and treatment for months.  Anyway, this long tangent is meant to surface my nerves when getting any subsequent results.  Any time I sweat or have a twinge of headache, I experience some residual concern.  Am I just hot ... or has the lymphoma returned?  Is the MRI pounding around my head for an hour causing this headache ... or has the lymphoma returned?   Fingers crossed for continued good news tomorrow afternoon.  My stomach is a wee bit queasy with nerves....

I'll take strength as I remember getting the definitive DLBC diagnosis (via telephone) with Carolyn by my side, hearing PET scans and MRI results with Joe firmly next to me, having treatment at Dalton and up on my favorite hospital floor with Megan, Jonathan, Joe, Carolyn, Sally, and Rachel all right there to back me up, and having so much positive energy and prayer from so many friends around the world.  Thank you!