Geraldine Ferraro's 12-Year Benchmark

With the death of Geraldine Ferraro, multiple myeloma claimed its most prominent American victim in recent memory -- perhaps ever. Huong asked me whether I was bothered by this. I suppose she guessed that I might consider it to be an unwelcome harbinger of some kind. Anyway, the answer is "No", and not because I'm an insensitive lout (although that could be another reason).

When Ms. Ferraro was first diagnosed, in the late 1990's, her chances of surviving five years were deemed to be slim; her chances of surviving ten years were, for all intents and purposes, nil. In the event, she managed to hopscotch past the Devil for even longer than that, on the backs of powerful new therapies that became available in the intervening years.

Short of a cure -- and curing myeloma would require the kind of breakthroughs that merit Nobel prizes -- the goal of clinical oncologists today is to render this disease as manageable as, say, Type II diabetes. The gallows humor version of this says that "success" is lodged in making the patient survive long enough to be killed by something else. That remains a goal, as Ms. Ferraro's demise makes clear, but there is every reason to believe that I will be able to live a relatively normal life for many years to come, by shifting from one therapeutic regime to another over time, following her example. Yes, I will likely have to battle undesirable side effects. There will be uncomfortable moments when Plan N is found to be no longer working, and Plan N+1 has not yet succeeded in replacing it in a stable manner. I may eventually have to resort to something previously untried. But on the whole, it would really be a little surprising, to me, if I cannot do better than Geraldine Ferraro's 12 years before I'm done, since I should have access to options not yet conceived in her time.

Boosters

Yesterday my immune system advanced to "adolescent" status, at least in terms of childhood immunizations. I made my way to the office of my primary care doc to receive boosters for four of the five vaccines I received during my most recent visit to Johns Hopkins, in January. My primary care doc is of course not a pediatrician, but she does have patients young enough to need these boosters, so she had them on hand. I will get the last installment of these when I return to Hopkins for the last time (well, the last time related to the transplant, at least), for my 24-month checkup.

Cancer Research: Vital To The Nation's Defense?

Apparently so, since Congress has continued to fund it via Dept. of Defense budgets for almost 20 years, and will do so again for fiscal 2011, according to this Washington Post article. Of course, this is in addition to the usual avenues of funding for such research, such as the NIH. Money quote: "Breast cancer is a 'huge issue' for women in the military." Yeah, I get it, but...

12-Month Transplant Checkup

Wow. I knew it has been awhile since I updated this blog, but I didn't realize that it has been more than two months. That's good news though, really, because nothing exciting enough to report has occurred since then, and on this blog, excitement equates to trouble.

We traveled to Johns Hopkins on January 13 for my (somewhat overdue) 12-month transplant checkup. I have now obtained the bone marrow biopsy results, which the Hopkins oncologist describes as "awesome". The bottom line: "No evidence of myeloma".

After the tests were done, before we departed for home, I was given the first installment of my childhood immunizations. As you may recall, the transplant destroyed my existing immune system, replacing it with a brand new one more closely resembling the one I was born with. So for the past year I have been vulnerable to many diseases most adults have long since forgotten about, such as polio, diphtheria and tetanus. I received five injections, vaccinating me against the diseases just mentioned, plus hepatitis B, meningitis, and a couple of other less well known ones.

I will need boosters for all of these in March, but there should be no need to travel to Baltimore to get them; I'm guessing I will be able to get them all at Christiana. If so then I will not need to return to Hopkins until my 24-month transplant checkup, which I believe will be the last.

Meanwhile, there is just not much to say about my work experience of the past three months. It can only be described as "uneventful", which is of course blog poison. The days do drag out because of my need to take breaks, but I do not seem to be suffering much additional pain, knock wood. As for chemo brain effects, I don't see much that has happened that could be ascribed to anything like that. But maybe I have just forgotten all about it already.

Back To My Oar

The short version of this story is that I managed to survive my first two weeks back at work.

I work on the same product development team as before the onset of my illness, which has both comforting and disorienting aspects to it. On one hand, I'm familiar with much of what's going on; on the other hand, it's as if I have been suddenly transported forward in time about 18 months. Fortunately, the team is approaching the end of a product release cycle, so I'm engaged in such low-pressure activities as reviewing documents vs. software code, which allows me to reacquaint myself with the various software tools, without having to use them to actually create anything new at this point.

Going in, there are two open questions in my mind about my ability to do this. The first relates to the simple requirement that I remain more or less stationary for eight or more hours a day, usually in a sitting position. This involves pressures on ribs and spine that, eventually, begin to bother me, giving rise to the desire to stretch out in a prone position. Since I work at home there is no problem with this logistically; but, to get anything done, the bottom line is that I need to be able to somehow piece together a number of sufficiently lengthy work periods, with hands actually on keyboard. The lie-downs stretch out the work day. So far, this does not seem to be much of a problem, but it's way too early in the game to tell.

The second concern revolves around the question of "chemo brain". Almost since the day chemotherapies were first introduced, patients have complained of a variety of neurological side effects, generally adding up to a sort of mental fog, an inability to focus or concentrate. Historically, the medical community has tended to soft-pedal such complaints as psychosomatic, or in any case as dominated by the benefits of said therapies. The blood-brain barrier, it was thought, prevented the chemotherapeutic agents from affecting the brain much. But over time, the anecdotal evidence apparently accumulated to an extent that required attention from the research community. So far, the research tends to confirm that chemo brain is real, but may be a result of some combination of chemotherapies, of the cancers themselves (the latter possibility arises from the fact that even cancer patients who have been treated only by means not involving chemotherapy can exhibit the symptoms), or simply of the stresses induced by the fact that the patients have life-threatening diseases that make them feel real bad, and have to take drugs that make them feel even worse.

At the time of my stem cell transplant, and for some time thereafter, I could claim some chemo brain-like symptoms; I could stare into space with the best of them. I tend to think, though, that in my case a lack of mental stimuli, chronic exhaustion, and feeling just plain awful much of the time, were mostly to blame. As I have recovered, I have noticed the episodes that could be characterized as instances of chemo brain diminish in number, duration, and intensity. Again, although it's too early to tell for sure, I'm so far unable to detect any diminution in my ability to marshall the brain cells for the work at hand. Shoot, I may even be smarter. No, probably not.

October 2010 Notes

This month I resumed taking omeprazole, after being otherwise unable to shake some serious digestive tract disturbances. This was apparently the right move, because I am now feeling much improved in that area.

Meanwhile, once again my monthly test results were all deemed to be satisfactory by the Christiana oncologist. So, at my request, he composed and faxed to JDA a no-restrictions work release letter. I have arranged to resume my duties as a full-time employee of JDA, beginning November 1.

I have considered putting this blog on hiatus, until something "interesting" happens, rather than merely report good test results once a month. I'm now considering the possibility that returning to work will provide some grist for this mill. There may be a story here around an abnormal person attempting to resume a normal work life. If that doesn't sound compelling, and this is where the reader and I part company, then I can only convey my appreciation for sticking with me this far, which seems like a very long way already, to me.

September 2010 Notes

This month's test results were the same as those for previous months. No surprises there. Meanwhile, I have been visiting some of the other physicians in my life.

The cardiologist didn't even bother with a fresh EKG; based only on a visual inspection and a simple vitals check, he finally authorized me to return to its owners the supplemental oxygen equipment that had been cluttering up my garage for the past year. Barring some intervening disaster, he doesn't want to see me for another year.

My primary care doc has resumed the mundane tasks associated with, well, primary care: screening me for prostate cancer, checking blood lipids, prodding my lymph nodes. As you may recall, prior to June of last year, she had me on Lipitor for elevated cholesterol; that was in the oncologist's way when he began treating me, so I haven't taken it since. He's completely open to my resuming this therapy, if that's what she decides I should do. But from now on, the myeloma will be the elephant in the room whenever any health-related action is being contemplated for me; she is always going to have to get a green light from the oncologist for whatever it is she wants to do. In the case of cardiovascular issues, she will need to consult with the cardiologist as well.