Friday, May 22, 2009

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.


  1. Lon -

    I just came across your blog. I'm a 40-year old (for two more weeks anyway) who got diagnosed with IgG / Lambda MM back in November during a routine cholesterol test for Lipitor's effectiveness.

    After doing a lot of research I decided on the very aggressive double transplant regime at the University of Arkansas under Bart Barlogie. He believes (and he has data to prove it) his regime is curative for anywhere from 60%-85% of patients depending on the risk profile of their disease, so that's the route I'm going. My second transplant in on this upcoming Wednesday, and my blog is at if you are interested in comparing notes.

    One thing I would say is DO NOT LOSE HEART in the face of this disease. The fact is, existing treatments may in fact be curative for a subset of patients, and new treatments are in development all the time. Next generation Velcade is 1-2 years from widespread use, and next generation Revlimid is about the same. Father out there are heat shock proteins and other types of anti-myeloma agents being worked on. This disease does not need to be a death sentence.

    I know it is hard and nerve wracking...and I've only been at this for six months versus ten years for I don't mean to speak out of school, but don't yield!!

    I'm not sure when you went through your last ACST but they've gotten very good at controlling the nausea from the Melphalan, and I've been fortunate with mucositis as well. If you do go down the road of another ACST, I hope it goes smoothly for you.

    Be well, and I'll be keeping you in my thoughts!



  2. Lon, just checking in to say "Hi," and let you know I'm still intending you get some good news soon... and praying for a good outcome.

  3. Lon, I can relate to your current situation. I've been on a DVD-R regimen since January 09. I'm Kappa Light, 61 yo male, dx Q1-00. I've done the high dose Dex for 7 years, the Biaxcin in Oct '08 (no effect), then VDD, and most recently the DVD-R. It worked for 3 months, but my most recent labs (5/22/09) had my IgG rising from 2950 to 4030. My M-spike actually fell slightly 3.43 to 3.12 (still not good numbers). I see my onc in the morning and we'll see what she wants to do. I have a feeling she is going to say, "BMB time!" I also get my monthly Zometa infusion tomorrow. I've been on Zometa every month since it was approved by the FDA in 2002. Over all I'm feeling pretty good, but if the IgG keeps rising, I will begin to have the same premonitions that you've described. I still go to the office each morning and put in a full day, and as long as I can keep that routine, I can handle new therapies & procedures.

    I live in Temecula, just north of San Diego, and Jim Berenson,MD is my onc 2x year, with E. Mendoza,MD for my monthly maintenance. She did her residency at Cedars Sinai and Dr. Berenson was her mentor. I'm lucky that she knows the MM disease, and can consult with Dr. Berenson at any time.

    You are a very good writer; I enjoy reading your blogs. But especially so now because I may be close to where you are with this disease.

    I know it's not easy to be positive, so I try to face reality without being so resigned to an end. Life is short for everyone, but for us MMers it may or may not be a little shorter. My goal is to be around for at least another 10 years or more.

  4. Lon,

    I can't tell you how familiar your words are to me. Even when I got the good news that my current treatment is working splendidly, I had to take time to soak it in and accept the news.

    The uncertainties are just so frustrating.

    Hope the new drug improves your response.



They spam, I moderate. When you send a comment, it will disappear for a bit until I am notified. It hasn't been eaten. On the plus side, I can now reply to questions or suggestions, if you have any, in the comments!