Statistics

Sunday - January 26, 2014

Thursday was a full day of medical appointments - bouncing around between 2 UCSF campuses.  Appointments focused on my lifelong inability to shake coughs/colds, the continuing mystery of my elevated liver enzymes, my (improved but extant) gastro distress, and of course the specter of stage 4 DLBC lymphoma.  So while I am very happy to have a new game plan to address my persistent colds and am relieved to put off a liver biopsy for at least another month, I am most contemplative about my conversation with my oncologist. 

The urgency of VCU's Bone Marrow Transplant plan hovers uneasily above my current health, undermining my piece of mind.  VCU and our second opinion at UMD placed such an emphasis on securing that allogeneic BMT.  I was even considered for an NIH clinical trial as a means to get me that (dangerous) life-saving BMT.  But no match came off the Be the Match registry.  And it turned out that I was NOT eligible for the NIH trial (because I had not relapsed - thank God).  My last option was a mini-haplo at John Hopkins where the lymphoma specialist said I should not undergo a BMT unless/until I relapsed.  UCSF strongly concurs with Hopkins.

My oncologist emphasizes that statistics are my friend.  As every month passes without relapse, my odds improve.  As noted in yesterday's wrenching article in the New York Times, "these survival curves, called Kaplan-Meier curves, are one way we measure progress in cancer treatment, plotting the number of patients surviving over time."  In my case, the greatest chance of relapse is (was?!) in year 1.  I am acutely aware that I am certainly not out of the woods.  I am semi freaked out every time I awake slightly damp or feel tired at the end of the day.  Can you imagine my angst if I ever got a headache?  Particularly on my left side?  However, the radiation of the PET and MRI scans carry their own risks.  What to do?  Well, given statistics, we are going to wait until April vacation for my next round of scans.  We are going to wait for 6 months rather than our previous 3 month interval.  And I am going to try to shake the worry and those jangled nerves.... Focusing on the positives of my health.... Being mindful of my many continued blessings....