Checking Out

Well, not in any serious way, it is just, finally, so beautiful outside that I thought I would get a word or two on the blog and then check out for the rest of the summer.  Here are some updates.  

Bodily fluids tests showed no surprises.  Everything is good, including measure for kidney functions, except the high level of lambda light chains and the poor ratio between them and the kappa light chains.   (Remember, they are both "light" proteins that attach to a "heavy" protein to create a lymphocyte and are potential trouble when out of balance and loose in the circulation.)  

Pain management has not been great.  My primary demurs from a pain clinic referral because he fears that with something so odd as my experience and the fact that it is chronic I may ultimately become psychologically and physically addicted to narcotics.  He proffered a prescription for a "synthetic" narcotic, but I have only taken a couple and with no perceivable effect.  Over this last holiday weekend I took it pretty easy and noticed that the ache subsided a bit, not cycling as it is wont to do on most days to a high pitch at about 5 or 6 in the afternoon, and that even today, as I am back at work, while the sensation is rising it is not quite as achy as before.  Maybe variation is what I am to expect for the long, foreseeable future, especially while not being treated for the underlying disease.

I do have a new theory about the pain: it is a combination of nerve and muscle discomfort.  I am not sure that the doctors have taken the potential for muscle discomfort into account.  I even asked my attending physician at Boston Medical Center and she was not sure she knew what effect the deterioration of the nerve would have on the jaw muscle.  I think that it makes it overwork as it tries to figure out what the nerve is, or is not, directing it to do.  Hence the ache.  I understand Dr. Law's point about the pain clinic; in fact, I have not gone to one for the same reason.  But I do want to pursue these other considerations and perhaps ask for a run of the mill muscle relaxant or something like that to see if it would help.  I know you will all have a chuckle when I say that nothing helps it more than a glass or two of pinot noir, and if that is the end of the discussion then life could be worse, but it does seem odd that the entire medical profession, not to mention the pharmaceutical industry, does not have something for this discomfort.

On the treatment front, I also have a new thought: Should treatment follow the Alzheimer's path, rather than the cancer model?  From what I understand, Alzheimer's disease, associated with dementia, is also a "protein" problem, different protein than a lambda light chain, butit involves the same process where it ( a Beta protein) unfolds "unconventionally" in brain tissue which causes for the accumulation of "plaque" that destroys the brain tissue.  Treatment models search for materials that either or both neutralize the proteins or eliminate them from the body.  That sounds right to me, more targeted, than the stem cell transplant approach that, at least for amyloidosis, is not even a "cure" but only pauses the production of too many light chains.  Unlike some disorders, such as lymphoma, the freezing process of the stem cells does not kill the abberant cells, in this case plasma cells that the body cannot live without anyway, and nor does it correct their deviation.  It just resets the clock.  If there were materials that somehow interfered with the deposition of the proteins into tissue, that should go a long way in deferring the disease.  I am not a doctor, so what do I know, but I will go to the regional events where research and medical doctors interested in this disorder visit the support group and share my ideas.  

Quick update: All of us had a wonderful time at the Mitrano family reunion last weekend in the Adirondacks.   The house issue for Denise is in abeyance while insurer and contractor attempt to close a $200,000 gap (!) in their estimates.  All the children are very well and thriving:  Bonnie is finishing up her master's program in human resources; Rob is working in a shop this summer and taking a third year to do general automotive mechanics; Nikko has taken the college standardized tests and picking out schools for applications; and Sam alternates between killing video zombies and riding his bike around the neighborhood looking to play ball.  At the General Convention for the Episcopal Church, this year in Anaheim, Denise has two full weeks of immersion in the politics of the church.  Nikko will accompany me this year to Boulder for the EDUCAUSE Board Meeting held there, after which we will visit my friends Sandy and Tom in the mountains.  (Sam came with me last year.)  And altogether we hope to steal a few days away at the lake house between renters.

Have a wonderful summer, friends and family!  Next test is the sixth month echocardiogram which I will have in Boston in the early fall.  Send a prayer that the discomfort subsides, and know that in the meantime I count my blessings, including each one of you, every day.