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.