Unbelievable!

First, the basic medical news.  A couple of weeks ago my primary care physician in Ithaca, Dr. Law, did two positive things: lifted my spirits and changed my pain medication.  His spirit lift was simply to suggest that so much is unknown about this disease that he suggests putting worry on hold.  Instinctively I was already there, and he helped me make the thought more firm.  About future treatments, I will cross that proverbial bridge when I get to it.  In the meantime I have talked openly with the boys about these eventualities so everyone is up to speed.  I will continue to be tested in full for a year.  Dr. Law suggests that after one year, if everything is well, I may not have to be so heavily monitored. That advice I may not follow. The cost to my life if my organs are involved is too grave to treat facilely, and the doctors at BU are, after all, the experts.  But I like the upbeat perspective.  

The new pain medication is helping.  It has more of a sustainable numbing effect which has brought my pain levels down a notch or two from where they hovered since the surgery.  By five in the afternoon, for example, when the pitch is rising to fever, it is about a 4-5 rather than a 6-7.  I think of each increase like the Richter scale, i.e. 10 times as great as the one before it. Perhaps someday the amyloid will destroy the nerve completely.  I have been warned by doctors that it might be hard to tell because of phantom pain symptoms, but at least for now it is better than before.   Nerves take a long time to heal, so it is also possible that the additional damage done to the nerve by the surgery is also on the wane.   

One side effect of the numbness is that I am chewing the inside of my chin and cheek more, something I recognize either, or both, by texture and the taste of blood.  Gross, huh?  I don't feel it in the traditional way that one would.  And anyone who considers themself my friend, and I hope you all do, will help me by taking complete liberty to let me know if food dangles around the outside of my mouth? Please!

And now for that which is unbelievable in the general life category:  48 hours after Denise and I arrived in Aruba, her daughter called to tell us that their house -- the one into which Denise had just moved two weeks prior -- had suffered devastating fire and smoke damage.  Bonnie, Rob and Denise's dog, Sadie, all escaped as the basement was engulfed in flames and smoke rose up the cellar stairs.  

I hardly know what more to say than to share the news.  All fires are horrifying.  Vulnerable feelings engulf like flames.  What was once a comfortable setting, filled with treasured photographs, art and warm memories turns to destruction, bad air and ash.  After so many years of different places to live, that Denise finally felt like she was home profoundly compounds the loss.  Our very first entertainment was with my beloved Aunt Angel and Uncle Joe who brought delicious food and home made wine.  Sadie even broke away from her imprisonment in the basement to offer an exuberant, golden-retriever greeting.  Now, in the same room where we had dinner, there is broken glass, upturned chairs, charred frame and photographs of a turn-of-the-last century vaudeville advertisement featuring Denise's paternal grandfather.  The stench is truly toxic (and since the BU doctors told me to stay away from toxins such as pesticides and fertilizers or other chemicals, I tried to get out as soon as the others arrived to assist Denise in the review).  

The fire was late Friday night.  We received the call Saturday afternoon.  The rest of that day was very difficult emotionally for Denise, naturally.  By Sunday morning we had begun to settle down, best evidenced by an surprising, atypical and completely hilarious comment Denise spontaneously made while we were having lunch.  We were sitting in an outdoor restaurant that had a tarp strung overhead when some dark clouds blew in quickly and it started to rain. A group of people walking by ran into the protected area under the tarp.  One woman, right out of Central Casting, NYC, said, "In awl the yeers I've bean comin' to Aruba, I neva saw it rain!"  At which point Denise pointed to herself and said outloud, "It's me, it must have been me, I caused the rain."  There is nothing like humor to navigate the tricky shoals of life.