Paper: The First Anniversary

A year ago last week I went under the knife. So to speak. The endoscopic procedure hardly resembles surgeries of old and so I have no real idea of what implements the surgeons deployed to probe the trigeminal nerve deep in the Meckel's Cave portion of the lower skull. The biopsy revealed an amyloid, blood and bone marrow tests followed and I was off to Boston University Medical Center for Amyloid Treatment and Research. Although three days of tests revealed no other amyloids -- and everything from belly fat to heart was examined -- the results of a second bone marrow biopsy revealed to the hematologist the aberrant plasma cells that produce the excess lambda proteins that form the amyloid in body tissue. I have been checked repeatedly throughout this last year for any change in the levels of those proteins in blood, urine, heart tissue as indication of a deepening of the disease in heart, kidney, intestines or lungs. The elevated numbers remained constant, until recently. The last 24 urine test revealed none.

What has changed? Here is truly my hair brained belief, subject to change the minute someone figures out that the test was faulty or any other more believable explanation. Two months ago I become extremely ill very suddenly. I had never had anything like that happen in my life before. Four day blood tests revealed common strep bacteria and I recovered after a full dose of very powerful antibiotics. But I wonder. I had no evidence of it in my lungs, where it usually resides, and the pain in my left flank was truly overwhelming, perhaps evidence that my kidneys were on their way to shutting down, and if so, then a signal as to how seriously the bacteria had penetrated my system. But with almost no warning. So here is my idea: either as cause or effect, the immunological response of my body has at least temporarily knocked out the aberrant plasma cells. Maybe I produced my own "stem cell transplant" with this extreme reaction, and if so, have bought myself more time than the hematologist prognosticated I had last year before needing the procedure, two to three years. From this blog to God's ears ...

In the meantime the pain in my jaw continues unabated. My dear friend Karl Pillemer, always on the outlook for me thankfully, has recommended a face and head pain clinic at Columbia Presbyterian in New York City. That recommendation just came this weekend and I will follow up this week for an appointment. After a year of pain, produced probably by the scraping of the nerve before the surgeons understood what it was they were slightly resecting, I am prepared for a medical regime, even if it means using minimal levels of controlled substances. I have tried all of the neuropathic medications to no avail. And believe it or not, I am even tired of drinking wine for medicinal purposes. That process has spoiled the fun of drinking it for its own pleasure.

There is other good news to share. Denise decided to forsake the house that burned in the 19th Ward of Rochester and has moved into a lovely home in the fashionable district on Park Avenue. We love it and have already enjoyed the area with its restaurants and shops. Bonnie has a handsome and very nice boyfriend named Mark, and Rob is seeing a lovely young woman, Morgan. Nikko has made his application with RIT and still seeing Miss Mady, who is thinking of colleges near her home in New York City. Sam is killing aliens in the basement, played a good season of modified soccer and has just made the Junior National Honor Society. We are proud of each one of them, and love them all.

For Thanksgiving we will host Denise's cousin and her daughter, my good friend from graduate school and her husband, Sandy and Tom, at the lake house. Denise is off to Melbourne, Australia shortly thereafter for an International Conference on World Religions and I follow up by one of my favorite things all year: seeing friends for work in the North West Corner of our county. Denise will meet me in Portland and we will share a weekend before returning for the pagan-christian holiday season. :-) Christmas we will celebrate in Rochester this year.

The pain notwithstanding I feel good. I have more energy every day. Delighted to have this very unusual year behind me, I am looking forward to new, more productive challenges in the hope of health and happiness of this next year. May I wish the same for all of you!