A little timeline

I was diagnosed in the early summer of 1998 via a procedure called a "CT-Assisted Needle Biopsy." While face down in the ring of a CT machine, I got to watch on a monitor as an eight-inch needle was inserted three inches into my pelvis. Did I mention how painful that was??

I learned I had the disease when my pelvis broke at the airport. I had no idea what it meant, but for the first time, I couldn't get up. Strangers had to help me. I managed to get home, felt a little better the next day, and went to my first-rate ortho guy two days later. He looked at the x-rays, said, shit, I can't handle this. He sent me to the best cancer surgeon in town. Things move fast when ugly stuff is on an xray.

As it turns out, the disease had been smoldering since at least 1985, because I have an unusual blood marker, alkaline phosphotase, which is always elevated in me when the disease is active. It is a kind of measurement of on-going bone damage (actually, a signal to the body to make new bone). Not everyone has such a marker. I went to my old doc's files, discovered the first signs of the problem in the earliest records. So I had what is known as indolent myeloma. It would become active, eat a little bit of bone (from the marrow out), then go dormant. Until it finally broke through.

I had six weeks of radiation for the lesions in my pelvis and for pain in my lower back. The story of that part is in the book I'm writing. The chapter is called Acceptance.

I was on heavy duty pain killers, like oxycontin, which I hate. After a few weeks I was bleeding from nearly everywhere, couldn't sit down (which makes performing some bodily functions quite difficult) and couldn't stand up much either.

For a while I was afraid I was going to die. Then, after six weeks, I was afraid I wasn't.

My stem cells were harvested in December of 1998, but at that time a paper was published by the French that showed that early harvest followed by transplant later on produced the same or better results than when done immediately. So I managed to delay the transplant until the fall of 2005, reasoning that if I got the same result (survival) in 2005 as I would have had in 1998, I'd be seven years better off. That's how it actually worked. Not too many have followed that path, but, then, I'm still here.

On the way I pioneered what Dr. Brian Durie, the MM specialist, refers to as "The San Diego Treatment." I picked up the idea from a couple of geniuses (Judah Folkman, Robert Kerbel) who discovered that chemotherapy, when given in small daily doses, worked better than when given in the traditional way (huge infusions, long time for recovery, in which the cancer could rebound faster than the patient). It took a while to get my onc to agree, but I started on daily, low-dose Cytoxan, which not only bought me five years, but gave me long periods of remission in which I could behave perfectly normally, no drugs at all. Few side effects either: dry skin, thin fingernails. Never even lost my hair.

So then there was the transplant, which kept me in hospital for seventeen days, and which I'm not going to rehearse for you here since we have another coming up that will be fresher and complete. Let me just say, it was extremely uncomfortable, but it wasn't gruesome for me. Not that time.

The transplant bought three more years. The doctor expects a similar result this time, but no one actually knows. I don't myself believe it, but I won't object if he's right and I'm not. Transplants of this sort don't cure in my disease because of two reasons: the stem cell harvest involved is often contaminated with cancer cells, and when the doctors try to destroy the marrow, they don't get it all. The residual cancer cells that survive the ablation are advanced along their evolutionary path, which is why, when the cancer reappears, it is more difficult to treat than the one that was stored in the stem cells that were infused during the procedure. Which translates to a shorter period of remission followed by an even nastier battle.

One just has to roll the dice and take the consequences. The quality of prognostication is a huge problem in this kind of transplant. Some people are disease-free for years, some more than ten, others get little or no benefit, and it is not easy always to tell in advance who will get a benefit. Which is why it is a treatment of last resort.

So I've caught you all up.