Results!

The results from the Amyloid Clinic at BUMC where I went again for a battery of tests early last week are in and good!  The increase in lambda light chains in the circulation noted this spring turns out not to be significant; the bone marrow appears steady too.  That means that there is still an imbalance.  Too many lambda plasma cells are creating too many lambda proteins that go out in circulation, but there is no change from what was discovered after the neurosurgery in November of 2008 and subsequently for tests at BUMC in February of 2009.  Hurrah!

The BUMC doctors did recommend another MRI, which I will have sometime this fall, to see if the amyloid has grown in size or is affecting any other nerves or tissue in the area   Lyrica still has more of a salutary effect than any other neuropathic medication I have tried for the trigeminal pain. Living up to its reputation, Lyrica also has the unfortunate effect of changing brain chemistry that slows down metabolism, hence a much unwanted weight gain.  I am going to try diet and exercise to chill this deleterious.  I needed weight gain like a whole in the head!  (Did you parents use phrases like this one?  Mine did, and they come in handy sometimes!)

Denise and I were married on the anniversary of our blessing in 2003 this month, on August 9, at a quiet ceremony in a lovely garden on Commercial Street in Provincetown, MA.  We would have like to have married in New York, but the disappointment of the state legislature earlier this year put us in a mind not to wait.  The Rev. Terry Pannell of St. Mary's of the Harbor officiated.  I am very glad to think of him now as a dear friend.

Nikko is off to school soon at RIT; my friend Norma at NYU, a parent too, suggested one thing: bring kleenex.

Sam is starting high school this year in Ithaca.  I am encouraging him to run for student government because he is very social and has lots of friends and opinions too!

For those inclined to meditate or pray, I thank you all for that which you have offered me.  Please include in that vein the doctor's at BUMC.  Many of them, and Dr. Rosemary O'Connell in particular for me, are living saints, people who dedicate themselves with skill and compassion to the ecology of this disease.  Please also think of those with amyloidosis in a far more dangerous presentation than mine.  On Monday at BUMC, one patient in our "class" (which is every Monday when people come from around the country for the standard battery of tests, support group and general getting to know each other and the families) died in the waiting room!  Others are struggling with different stages of the disorder and its effects on vital organs.  But there is hope:  One man there, perhaps in his 40's, reported that he is 11 years out from a stem cell transplant.  He looked great, had a lovely and loving wife with him and two beautiful children!