Back to Boston: BUMC Amyloid Research and Treatment Center

Remember the propitious results of the October test?  A chimera.  And a lesson.  Blood test must accompany the urine.  The lab did not have the order for blood work so they did not do it.  The little lambda proteins do not always show up in urine (although more complex proteins will in the case of kidney malfunctions).

Tests last month revealed higher levels of lambda proteins than last year.  Higher numbers of those proteins throw the ratio between the two light chain proteins, lambda and kappa, in inverse proportion; ideally, they should be 1:1.  That I have monoclonal gammopathy of undetermined significance (MGUS) is clear.  To the Pittsburgh pathologists it is clear that I have an amyloid on my right trigeminal nerve.  Whether these proteins have attached and "unfolded" on other tissues or organs is why I will return to Boston for more tests.

When I forwarded the results which came from tests I had done here in Ithaca (but which are sent to Mayo Clinic for analysis) to Denise, she responded, "I see a fat pat aspiration and Boston in your future!"  Ah.  Along with transubstantiation, Denise has taken on powers of prognostication!  Jokes aside, Denise will come with me, thankfully.   The bone marrow aspiration is fairly invasive, the fat pad aspiration (on the belly) less so, and the other tests, such as gastro-intestinal or echocardiogram, either less so or not at all.  More important is the comfort of love and the joy of her company.

I remain on the lyrica for pain.  It helps, but at the cost of some resistant weight gain and less tolerance for alcohol.  The latter is probably a blessing, although in the scope of things ultimately not as important to me as it used to be.  (I can't taste wine like I used to be able to because of the tingling and numbness on the right side of my tongue.)  What remains important is keeping the pain at a dull roar so that I can engage with my family unencumbered by the irritation and emotional drag that pain creates and continue to be productive at work too.

Last February, Dr. Sloane predicted that I would need a stem cell transplant in "two to three years."  Of course, there is some probability for never (at least for this immediate purpose) and some for sooner.  I always have joked with Denise, long before these medical events and borrowing a line from a Vonnegut novel, "I will lose weight for you when I am 55."  Closing in on 52, in time I may be in a position to keep my promise :-)