The June before last was much like any other.
The days were long, the sun high and the greens of nature still fresh and bright. I was exercising regularly, eating right and taking my vitamins.
But I -- unsuspecting-- had already commenced a dark descent into malignancy.
For almost precisely on summer solstice weekend, something untoward came at me like a pile driver, like a NFL linebacker -- from out of the blue.
I was seized with a virulent feverish malady that erased my appetite, wrecked my well being and put a long nasty rash on my side that stung and ached and stabbed like no pain I had ever felt before
But as bad as this case of shingles was – and it was that – it was merely the tip of an iceberg to my Titanic, the nose of the crocodile about to rise out of some tropical murk and snare and devour me
I waited patiently for months for its deleterious effects to abate. But many did not. Fatigue and malaise were new and constant companions. I experienced bad metallic taste, alternative food revulsion and cravings, weight gain and loss and gain again. Dark chocolate and whole heat bread suddenly tasted terrible. My ability and desire to exercise completely collapsed and vanished. I was shut in. Summer dragged into Fall.
By November I had had enough. I drove to New Hampshire and got a broad spectrum blood test.
I remember standing dumbfounded to the point of dizziness in my Post Office as I viewed the results a few days later. I was severely anemic. And my kidneys were failing. Incredulous, I repeated the tests a few weeks later. The new results were even worse. Something inside me was progressing. And at the apparent rate it was going, without some intervention, I would be on dialysis or dead within another year.
I wondered what was wrong with me. Was this some bizarre shingles post viral effect? God’s meting out of punishment upon me for some wrong? The fall out from a long bitter divorce ?
What then transpired was a circuitous (and hazardous, I discovered) route to..diagnosis. I will spare you those depressing details.
And it was a real doozy. I had always taken some pride in building or crafting things that were rare or unique or special . A home, a book and motorcycle or two.
Now my bone marrow had done the same thing to me. I had a malignancy there that was rarity piled on top of rarity, piled on top of rarity. What I had was -- hold onto your hats -- was something called Waldenstrom's Macroglobulinemia.
WM, for short, is a rare variant of another tongue torturer – Non- hodgkin’s Lymphoma, The same affliction that had killed Jacqueline Kennedy Onassis and King Hussein of Jordan. Well I was in good company at least
The malfuncting marrow of most people with my WM affliction put out an excess of a large antibody called IGM. But my marrow was doing something extremely unusual in Waldenstrom’s . It was over producing very small antibody body pieces called Kappa Free Light Chains. And the over production was truly horrendous. On a scale in which 3 to 19 is normal, my Kappa Free Light Chains presence were over 7,000.
These had clogged my kidney , resulting in something called cast nephropathy. Again, an extremely rare effect of WM. So much so that cast nephropathy is commonly called myeloma kidney and is normally the result from a completely different kind of cancer – multiple myeloma. On the internet I read that cast nephropathy in WM was so rare that it had first been reported only very recently -- in 2012.
( Digression: Chronic kidney disease is a whole universe unto itself. And I had it on top of WM. CKD means a grim renal sparing low protein diet. I like to say, essentially white bread and iceberg lettuce. You have to limit severely tomatoes, potatoes, beans nuts, chocolate, winter squash, many greens, milk products of any kind. Diuretics like coffee and tea are out as well. Disclosure: I cheat. )
Oh lucky me. Somehow I did not exactly feel like a celebrity or lottery winner. About 90 % of my marrow was now involved in this alphabet soup malady. And when my marrow went bad, all sorts of bad things had happened. My kidneys had failed 85%, teetering right on the edge of needing dialysis. My red blood readings – like hemoglobin -- were about half normal and I was flirting with a need for transfusion. I have eventually had four so far. And my plasma was so loaded with the bad Kappa pieces I twice have had it centrifuged off from my red blood, discarded and replaced with fresh clean albumin.
My oncologist was worried about another bonus. My marrow was giving me a very weak immune system. My white cells were periodically scarce as hens teeth, apparently .This why I had gotten shingles -- remember them? -- in the first place. The temporary fix here is a booster called Neupogen. The shot stings like a hornet bite. I have received three of those beauties.
And this cocktail of chemicals and procedures is just a partial one. Shaken, not stirred in the mix has been a gruesome bone marrow biopsy, a hazardous kidney biopsy, potassium binder, eight round of chemotherapy and mega doses of steroids that give you insomnia, raging hunger for junk food and ugly new fat jowls and belly .
I would like to conclude this brief chronicle with a coda of miraculous remission and cure. But that is not to be.
After they have thrown everything at me for months -- except the kitchen sink ..(I ducked and missed that) my numbers -- although bad - have at least stopped dropping in general and even a teeny improvement -- last few weeks finally. As far as I can tell my prognosis – due to age anemia and kidney disease – is somewhere between 24 and 36 months.
I will take that for now. Some things still to do yet. I better get going. And I better not buy hard peaches.
