Weak in the Knees

I can't count the many times I've anxiously watched my fax machine grind out what I thought would be crucial labs. After years of psych training, I feel little fear until my blood is drawn: after that, anxiety grows daily, peaking with heart palpitations, anguish and mild panic as the maddeningly-slow fax machine prints the results. But once they are in my hands and plotted on my graphs, I calm down no matter what they tell me. "It's always better to know," I tell myself.

Not this time. I couldn't bring myself to make the necessary phone calls.

The stakes seemed to be so very high. The bone marrow biopsy, if an improvement over last time, might give the go-ahead for Transplant Two and a new lease on life, albeit temporary. If no improvement (or a worsening), the likely future would be clinical trials (which usually don't work) and a steadily diminishing quality of life until the painful, merciful death. It was more than I could handle.

So instead of my usual behavior, I decided to take Marinol, watch action DVDs, and let my transplant doc tell me the results the next day. In other words, for the first time since I was diagnosed in 1998, my knees buckled under pressure and I crumbled into a heap. I didn't want to know.

Plasma-cell Infiltrated Marrow (2% is normal)

From my lab report: Abnormal kappa light-chain-restricted plasmacytosis composing 50% of marrow cellularity and occupying 20% of the medullary space consistent with marrow involvement by multiple myeloma. These results represent drops from 60-70% cellularity and 40% in the involvement of the medullary space after two cycles of DVD-R.

Not good enough to go ahead with the second transplant, my doctor said, we aren't going to get to where we need to be on DVD-R. I'm thinking, cue the funeral dirge.

Then, doffing his magician's black hat, he extracted a rabbit: bendamustine. It is prescribed "off label" for myeloma in America, but has been used effectively in Germany and elsewhere. Although simply reading its probable side effects would relieve severe constipation in under ten minutes, it does have a reasonable probability of working. I start its first cycle next week.

I believe my experience to be universal: we expect the next lab test to be definitive, to reliably reveal the future and put an end to intolerable suspense; however, the satisfying revelation we need and expect seldom comes. In my case, the plan has changed but the uncertainty is undiminished. Every time I think I've crossed the goal line, I discover that it has been moved further back. Like Charlie Brown trying to kick the football, I fall for Lucy's trick every time.

One day the report will be definitive: there's nothing more we can do for you. Perhaps, after years of moving goalposts, air kicks and pratfalls, there will be a feeling of relief amid the fear and pain.

A Last Chance

I wish I had written three weeks ago about the Saturday I spent doing yard work but having just posted about planting my tomato garden, I spared you the story of cleaning the lily pond, drinking Mexican beer, re-potting palms and the like. I must say, though, I felt and worked like a man twenty years younger. It was a grand day.

The next day I noticed a slight backache, nothing particularly surprising or alarming. It didn't prevent me from revving up the motorcycle and tearing up the pavement on a pretty Sunday morning. I wasn't knee dragging around tight corners at idiotic speed, and I was wearing Kevlar-armored jeans and jacket, but, still, there's nothing like raw acceleration to redden a man's blood! The bike will do zero to sixty in something under five seconds (but not with a heavy old man on the seat).

Over the next week the ache slowly worsened. By the end of two weeks I was bravely trying to cope with heavy narcotic painkillers (Oxycontin 40, which is huge for me). Bravely, because I was constantly fighting the urge to regurgitate and giving up seemingly forever the functioning of my alimentary canal, including the pleasure of eating. I whined a lot, but at least I didn't hurt.

For reasons unclear and undoubtedly weird the pain diminished considerably on Monday, and by Tuesday I needed no narcotics, although it did take a long while to become fully uncorked. Some subsequent days have been easy, some more difficult. Yesterday was a bear, but no worse than half a Vicodin kind of bear.

Apparently, there is a pathological crack or something like a crack at the left attachment point of the sacrum to the ilium (no, nothing to do with Ilium of Helen of Troy, although how she threw around her backside figured prominently in Homer's epic). An MRI next Wednesday might tell us what the hell happened and what, other than another transplant, needs to be done about it.

Speaking of torture, which is a fashionable subject these days, Friday I endured another bone marrow biopsy, this one a tad more gruesome than most. An instrument like the one at the right drilled through my pelvis like a German whacking down the Berlin Wall — the doctor might as well have been using a sledge hammer. There was a lot of drilling (his) and cursing (mine) involved. Particularly awful was the final step, the sucking out of a deep sample of the marrow. I wonder if biting down on a leather thong or a big lead bullet would actually help.

With luck the results will be encouraging, so there may be a chance that a second transplant will begin as soon as next week. You might recall that the biopsy of February 24 resulted in a surprising 60-70% plasma-cell infiltration of the marrow (2% or less is normal). That stopped the first attempt at Transplant Two. Now, after two cycles of brutal chemo (DVD-R), my future (that is, whether or not I have one) depends upon seeing a significant reduction in that percentage.

This blog has become rather more far-ranging than I had originally intended, mostly because of the indefinite postponement of the February autologous stem-cell transplant. The original purpose of this blog, as stated under its title above and in the first post of last January, was to produce a more-or-less daily chronicle the events of the transplant. Many begin with the intention of doing a similar thing, but few are able to keep it up — it just becomes too hard. I am resolved to succeed even though it will be a repeat transplant and likely to be missing much of the surprise and horror of the first — at least I hope so.

In the event that there is no second transplant, then I'll continue with whatever we do next (probably clinical trials) until I'm no longer able to do so. One way or another, I hope the result will be a valuable record.

Not Responding!

A month ago I saw my response to the first cycle of DVD-R (Doxil, Velcade, Dexamethasone, and Revlimid) as positive and definitive. Kappa, which for my type of multiple myeloma estimates the overall tumor burden, had dropped by more than half in just three weeks. Such a strongly positive response to the first cycle suggested that future cycles would also produce good responses, at least in the short term; therefore, a successful end-game-delaying second bone marrow transplant had become a likely option! My surprise and delight were unambiguous.

But I was wrong.

Today, at the end of the second cycle, my kappa measurement is devastatingly unchanged from the first cycle (actually, it rose slightly, from 33.2 to 36.5). DVD-R might still be annoying the cancer but is no longer reducing it. This week there will be another bone marrow biopsy, but I don't expect it to meet the original goal of less than 10% plasma cell infiltration of the marrow. Had that goal been met, the prognosis for a second transplant would have been good. Now it is uncertain at best.

You'd think that with my track record I would refrain from making predictions altogether, but the one thing that is clear is that I've been whip-sawed back into limbo. Although the major problem with stem-cell transplants for multiple myeloma is that they aren't curative, the inability to reliably predict the benefit of the procedure to any given individual is a close second. Soon I may have to decide whether to undergo for a second time what has been called "the most punishing procedure in all of medicine" without the assurance that the benefit will outweigh the agony.