Spring Charm

Whatever the groundhog saw or not this year, spring is coming early.  The first chickadee of the season is singing outside.  The first snow inspired my last blog; the bird acts as a muse for this one.  And I should tell you that with the shared news of Denise's and my wedding last summer and with posts last March and June, we have come a full year around the seasons with no new significant medical reports.  For this blog, and for reasons which I shall detail below, this will be my last post.

It has been almost two and a half years since the neurosurgery and two years since the first visit to the Boston Amyloid Research and Clinic Program.   I have learned a great deal about protein related disorders since then and keep my eye on this dynamic area of medical research.  With a confirmed case of MGUS (me a a zillion others), I will personally be sure to have the type of blood test that looks for further elevations in lambda light chain proteins, an indication for any number of disorders from amyloidosis to the statistically more likely multiple myeloma.  I can be grateful for the potential head's up on that one, even if I hope the information does not pay off ever, but if ever, many, many years down the road.

I still have pain.  In two weeks I am going to the ENT doctor in Ithaca who cared for me after the surgery, Rob Strominger, to explore nerve blocks.  I had one back in the immediate aftermath of the surgery and it worked to alleviate the pain as long as the lidocaine was active.  Although it makes that side of my face numb, just like when you go to the dentist, it does take the pain away for that period.  It is like a wave of relief to have that experience, and I would like to see if that could be done routinely.

Because I did not have a stroke, nor do I have Bell's Palsy, whose effects are observable, most people do not know that I experience pain every day, from at least noon until bedtime.  Those who do know I hope forget about it, or at least that is what I try to do.  Distraction is a great medicine.  But the truth is the nerve damage bothers me every day, only the degree varies.  The neuropathic drug I take, Lyricia, has helped, but unfortunately with the notable side effect of weight gain.  Alas.  For that path, I see no end in sight.

But the amyloidosis feared at the outset over two years ago has not materialized.  The Boston hematologist set two to three years, but Dr. Law does not see it and I don't feel it going that way.  From our lips and hearts ...  At the clinic, I did see some people very ill with the disease.  Last August, one man died in the waiting room of the clinic, where I had seen him sitting only moments before I was called into an examination room.  Make no mistake: this is a very serious and, when not diagnosed in time, deadly disease.  It deserves enormous attention from the medical community, and many be part of a number of protein related disorders that have connections to everything from dementia to cancer.  It just does not feel fair to those who endure the treatments and suffer its debilitating effects to continue a blog under this name when the worst fears of it have passed over our house.

So a couple of final thoughts.  First, with respect to my creative writing endeavors, such as they are, in this blog, I hope that for those who seek straight medical information -- my original motivation for the blog -- they have not been too distracting.  Also, a specific note related to my last entry: I was not writing about my father, but the fathers of many schoolmates.  (My father, who as the owner of a restaurant drank almost all day, I saw affected by alcohol only about three times in my entire life -- it made him jolly; and while he had a hair-trigger temper in the kitchen and could be physically combative -- mostly with policemen -- he was never violent with me.)  Second, for those who have followed my blog out of friendship or family love, know that I love you right back and am here for you in your time of need.  Finally, having come full circle, and loving the written word, I would like to finish with a spring remembrance.

I grew up on the west side of the city of Rochester, near the canal, the railroad tracks and the airport.  Some of my fondest memories revolve around those first nights of spring when we would open the windows.  Up would go the main window, out would come the storm window, in would arrive the screen, and I would be allowed to go to bed with the cool -- but not cold -- air streaming into my room.   Never mind that it smelled like jet fuel, or that the sounds that sung me to sleep were those of the whining plane engines on the runway.  Those sounds blend together with the hours that my father and I spent on the observation deck at the airport, ice cream cones in hand, watching planes come and go, each one a minor miracle of levitation.  They crest around the time I was six when my father took me on my first plane ride: a jet to Buffalo -- it took ten minutes -- and then to the zoo there, back home again, just for the sake of the ride.  These memories are like postcards from heaven.  If I can create for my children just a little bit of the magic that my father created for me in this life, I shall have done a good job.

God bless.