I sent this e-mail to Huong for forwarding on June 15, once the recovery was under way. I wanted to clear away some of the fog of war, since it seemed to me at the time that there was a good deal confusion out there around exactly what this multiple myeloma was all about.
I received a good many kind compliments about this e-mail, so I think it accomplished its task. It did seem to help quite a few people gain a better understanding. Dr. Wien even told me I did a good job with the biology parts. So I'm maybe a little too proud of this one.
Please forward as appropriate...
"The death of one man is a tragedy. The death of millions is a statistic."
-- Joseph Stalin
Since my theraputic regime is pretty much just set for awhile, with incremental daily progress only to report, I thought I'd try to fill in with a little background for the interested (or maybe the bored).
1. If you've never heard of this "multiple myeloma" stuff before, then that makes two of us. It is not on the cancer hit parade. In terms of percentage of total cancer cases, it is in the very low single digits. President Obama did not mention the need for a major assault on multiple myeloma in his speech to the AMA today.
2. If you look at the extremely vague list of putative risk factor groups, the only one I would seem to fall into personally is the "male gender". Men get this more than women. Caucasians get it more than Asians, but less than African-Americans. There's really nothing there. You would have to say that the fact that I have it is an act of God, if your personal theology runs along such lines. Otherwise, it could be a "tragedy", or just a "statistic". For what it's worth, I'm personally of the latter persuasion. I was more or less doing all the "right" things that you are supposed to do, in terms of diet and exercise and avoiding high-risk lifestyle choices. You should be doing that too, but don't imagine that you are thus somehow immunized from every bad thing that could happen. I am not depressed or bitter about this, it is just reality.
3. Although most of you are familiar with the fact that one of my vertebrae was undermined by a tumor, this is not "bone cancer". Brief biology review: In the bone marrow, stem cells create the white blood cells that fight off infection and disease. There are T-cells and B-cells. The T-cells are the active "soldier" cells that roam around and swallow bacteria and other aliens that get in. The B-cells just kind of hang around until a particular type of antibody is needed, at which point they create the blood plasma cells that can create that type of antibody. What is happening to me is that my B-cells are producing plasma cells that don't do the right things. They don't make the right antibodies in the right quantities, and they don't die when they are supposed to. One of the things they do do is to glom onto the surface of bones, where they interfere with the maintenance operations that keep the bones in good repair; so deterioration is not repaired and gradually accumulates. And as the gloms accumulate, which they do because these cells are not dying but increasing in number all the time, lesions and tumors form.
4. The other main area of damage is to the immune system. The bad plasma cells crowd out the good ones, so my ability to produce the right antibodies at the right times and in the right quantities is compromised. So if for example H1N1 comes to town, I would be in the group with increased risk on that front.
5. Because these are blood cells that basically go everywhere, there is the chance that I have bad ones elsewhere than in the spine. If so, they are not necessarily doing any active damage. They can hang around in the lymph nodes and bones for months or years, not doing anything, and then suddenly become malignantly activated by triggers not yet understood. So even if at some point I am declared "cleared" of the bad stuff currently visible, I will basically continue to have to be "watched" for the rest of my life. I'm being "treated" for multiple myeloma, not "cured". It's my new ongoing reality.
6. The bottom line is that we need to start killing off these bad plasma cells, hopefully in a targeted way that leaves all the "good" stuff as intact as possible. That is what the current radiological, and upcoming chemical, therapies are designed to do. So that's what we're doing.
7. If things go a certain way then it may become necessary to carry out a "stem cell transplant", which is basically a complete reboot of the entire immune system, beginning with the stem cells. Let's not talk about that yet. That would be another note as long as this one already is.
That's all for now...