Matters for Now

It has been a month since the evaluation at Boston University.  Although Dr. O'Connell called me the Friday of that week with the results, the formal papers did not arrive until last weekend.   Nothing new to report, but I have done some research to understand the root medical issues better.  

First, the confusion over the amyloid from the neurosurgery is essentially moot for at least two reasons.  The most important is that having found the aberrant plasma cells in the bone marrow as well as in the nerve tissue together with the free light chains in circulation, urine, marrow and in disproportion (3 times more lambda than kappa) the diagnosis of AL amyloidosis is certain and does not require the biopsy to substantiate it.  The other reason is that according to the hematologist, Dr. Sloan, the amyloid is "finicky," and therefore subject to uncertainty given the tricky way it weaves itself into tissue and requires staining and special lights to diagnose.  

Second, I questioned what about the plasma cells indicated the disease and have learned that it is their mere presence in the marrow and on the biopsy that is the root problem.  These cells are the ones that produce the excess free light chains.  That the chains are "lambda" and not "kappa" rings the final bell.  Interestingly, Dr. Sloan is sufficiently intrigued by the slides of the biopsy that the formal papers state that he is going to use them in a conference presentation. Glad to be of service!  I will see Dr. Law later this month to go over all of this material and to set up a schedule of tests as prescribed by the Amyloid Center.  

At the same time I am still working out pain management issues with him.  Finally, after 18 months on the anti-seizure medication, I am off of it, which has helped the vision problems in my right eye.  Blurriness, dryness and poor focus are the result of poorly done LASIX surgery by the infamous-to-the-Ithaca-area Dr. Arleo.   The drug exacerbated these problems because it interfered with the compensation that the brain performs to favor the left (formerly weaker) eye.  The gabapentin was only minimally effective by the time I weaned off of it, but did want to be careful not to cause a seizure by going off of it too quickly.  (Not that I have ever had a seizure, but reliance on the medication for pain management creates its own potential for seizures.)  

I am now on a neuropathic drug used mainly by diabetic patients, cymbalta, which both Dr. Law (whose practice is largely endocrinology) and the neurologist at BU (someone with whom I had gone the University of Rochester with, coincidentally) recommended.  It might be helping a bit, but it also makes me more tired than I would ordinarily be.  And causes me to yawn uncontrollably sometimes!  On Friday nights I cannot wait to get to bed, and usually sleep 12 hours to make up for the extra push I make during the week; I also sleep at least 10 hours on Saturday nights as well and try to get to bed by 9 or 10 -- unheard of in the old days! -- on work nights.   When I wake up the pain is about a "2."  By mid-day it is a "4" or "5."  And by five o'clock it hits its peak and is often at the "7" mark, where it hovers until I go to sleep.  At least I am getting about half a day at a duller roar.  For financial reasons I stopped the acupuncture, but hold it in reserve in the event that I accommodate to the medication and will need another method to break up the pain.

The boys are great.  Nikko spent his vacation week with the Guiliani's in Conn. and his girlfriend Mady.  Sam played with multiple friends over the two weekends, including one at the lake with Susan and Ian after a swim meet in Watkin's Glen for Ian.  During the week I took an afternoon off and Sam and I had lunch together, shopped and played squash.  They are beautiful, fun, loving boys and I could not love or adore them more.

Also in these last few weeks Denise moved from her home in Penn Yan (where she had been a parish priest at St. Mark's until last year) to Rochester (where she works for the bishop).  If you can believe it, her new home is less than a mile from where I grew up and lived all my life until I was 19!  Denise's home is in the lovely "Sibley Tract" of the 19th Ward, and promises to be a great house, neighborhood and stabilizing feature for someone who has been incredibly peripatetic most of her life.  And the really good news is that she and I are going to Aruba for five days later this month.  No hospitals, doctors or medical tests, just warmth, sun and fun.

Once again I feel very indebted to so many people who have expressed concern, shown kindness, been there when I needed them, said the right thing at the right time and most of all been the true meaning of family and friends.  I have not lost that sense of wonder about the fragility of life that I glimpsed when my parents died, and then when some of my teachers (Elizabeth Fox-Genovese and Brenda Meehan) passed away in the last few years and now with this challenge of my own.  No one would wish for a serious disease.  It has to bring with it something positive, something newly experienced for the better, something learned.  With the abundant love I felt in the aftermath of the surgery and the awareness I have for the preciousness of every minute and every person, the prospect of less has become more.