A personal update

There are still folks out there, especially here on campus, who know me well enough but who still aren’t entirely up to speed on what happened to me at the start of 2018 or how those events still affect me today. This post is my first public account of “the lost year” and its aftermath.

In late December, 2017, I experienced sudden, excruciating pain in my upper spine after lifting a very modest (20 lb.?) load of firewood. It not only didn’t get better over subsequent days, it steadily got worse until I was almost completely immobilized. After several fruitless visits over three weeks to my primary care physician and the ER, I was eventually diagnosed with a relatively rare blood cancer —multiple myeloma—on January 17, 2018. I was immediately hospitalized for several weeks, where I passed the time in a barely-conscious yet pain-wracked state despite every pain medication they could throw at me. I lost over 30 lbs. in three weeks.

Needless to say, this was a frightening and disorienting experience for me and my family, not least because we had never even heard of multiple myeloma, unlike more common blood cancers, like leukemia or lymphoma. Wikipedia alarmingly informed us that “[w]ithout treatment, typical survival is seven months. With current treatments, survival is usually 4–5 years. The five-year survival rate is about 49%.”

We learned that cancerous lesions permeated my skeleton. Even my skull was affected. The crippling pain that had led to my trips to the ER and ultimately to my diagnosis was due to compression fractures of first one, and then several more, vertebrae. This is a very common side effect — and often the first overt symptom — of multiple myeloma. The other common first symptom is acute kidney failure, which I narrowly averted.

Fun fact: In addition to the compression fractures, the C5 vertebra in my neck has disappeared from X-rays entirely. C4 now sits directly on C6. The net result of all of the spinal damage is that I’m a full two inches shorter now than I was at my aviation physical in mid-2017.

Fortunately, a combination of radiation and chemotherapy quickly beat the disease down to a relatively low level and prevented further damage to bones and kidneys, though I remained on morphine, opioids, and gabapentin for the first several months of 2018. Kicking the heavier pain meds during the later spring was one of my few satisfying accomplishments during this bleak period.

The next step in treatment was an autologous bone marrow transplant (also called a stem cell transplant, or SCT) on June 14. This again required hospitalization for almost two weeks and a slow recovery period thereafter during which my immune system was severely compromised, in addition to other after-effects of both the disease and the treatment. By September, I was back in the classroom but by no means at 100%.

Today (November 1, 2019), I am in “very good partial remission.” The presence of myeloma is still detectable in my regular blood tests, but it’s at a sufficiently low level that it poses no immediate risk. An oral maintenance chemo called lenalidomide (a.k.a., Revlimid®, with a list price of around $700 per pill, a topic for another day) helps keep the cancer in check. I will be taking this pill daily until it stops working some time in the indefinite future.

As of fall 2019, I go in to the UW hematology clinic only once a month to get blood drawn so that any major uptick in cancer activity will still be caught fairly early. I also still get intravenous infusions of biophosphonates to help prevent further fractures of my “moth-eaten bones” (as an orthopedic surgeon put it).

I’m fully back to teaching and research, albeit with physical constraints that I have to work around every day. Many things that used to be easy are now hard, partly due to general muscle weakness and partly due to lingering pain in my back. In fact, almost everything is harder than it should be, and that has often been my greatest source of frustration with this malady. I’m prone to fatigue from relatively mild activities, like lecturing. I often need to lie down during the day to rest my back, and I need considerably more sleep than I used to. I have creeping numbness and tingling in parts of my feet and toes, a condition called peripheral neuropathy that is another side effect of the ongoing chemo.

As a result of my stem cell transplant, my immune system has been reset to that of a newborn infant: it no longer remembers my previous illnesses and vaccinations. And I’m not eligible for re-immunization using live virus vaccines until June 2020. This includes measles, so for the time being I’m dependent on herd immunity for protection from that reemerging disease. Flying commercially and passing through international airports makes me especially nervous, though I still do it when necessary.

It also means that I’m extremely susceptible to every ordinary cold that comes along—much like toddler in day care. When I do catch a cold, it not only hangs on for longer-than-normal, but there’s a fair chance that I’ll also spike a fever and have to go to the ER to be evaluated for other possible causes, as has already happened several times.

Because of my ongoing vulnerability to infection, I make it a point to stay away from crowds and public spaces. If someone with an obvious sniffle or cough gets on the elevator before me, I’ll wait until the next one, no matter how antisocial that seems. In fact, both for protection from infection and for more comfort and flexibility, I now work from home as much as possible except to teach and to attend seminars and meetings. If you have looked for me in my office recently and I’m not there, this is why.

In addition to the obvious physical limitations, there is the near-constant awareness that this is not a cured disease but will almost certainly come roaring back when the current chemotherapy stops working. When that will happen is impossible to know: some patients relapse after less than a year; others go more than a decade before the first relapse. The only thing nearly certain is that I will relapse.

When that happens, it’s likely that a second-line therapy will prove effective once again — for a while — and then a third-line, and so on. As someone else once aptly put it, with multiple myeloma “you keep kicking cans down the road until you run out of cans.” Fortunately, research on myeloma treatments has been exceptional fruitful over the past decade compared to most other cancers so the number of “cans” is increasing. It’s not impossible that a real cure will be found before I run out of cans. Indeed, Wikipedia’s cited survival statistics for MM, quoted earlier, are already widely regarded as out of date: my odds now of making it past January, 2023, are almost certainly much better than 49%, especially given my otherwise good health.

Nevertheless, the profound uncertainty newly attached to the future — not only with respect to mere survival but also freedom from debilitating symptoms and/or treatment side effects — means that I expend much less energy on long-term planning than I used to and much more on making the best of the present and the near term. Anything with a time horizon beyond, say, 2-3 years and requiring a significant investment of time or effort seems like a gamble. That does not mean, however, that I reject every such gamble—my continued work with the ultralight airplane is one such exception.

In all of this, there are unexpected silver linings, and maybe that’s the most important point of this essay. I treasure and appreciate my family more than ever: my wife and two daughters have all been there for me above and beyond the call of duty since the start, including keeping vigil during the weeks in the hospital when I couldn’t even help break the tedium by engaging them in conversation. I also feel tremendous gratitude for the unwavering support and friendship of my colleagues in the department.

Above all, I feel liberated: Given my more immediate concerns and uncertainty about the future, I have let go of many of the service and advocacy roles I used to fill, both on campus and off. I now accept that there’s another generation of idealists and activists who can pick up that baton. And I can now, with peaceful conscience, turn my full attention to the diverse intellectual and creative endeavors that I truly love rather than grinding out more work, out of a sense of obligation, on a problem or issue that no longer really interests me.

In short, and perhaps counterintuitively, I am enjoying — and I insist on enjoying — my academic life, as well as many aspects of my personal life, more today than I have for a very long time. Ideas and projects that had been sidelined or postponed for a long time — in machine learning, atmospheric radiation, airborne measurement technology, and other areas of interest — are coming to the fore. The main challenge going forward will be to obtain the new funding necessary to support students on these projects, and that may take time.

Thanks for reading and understanding.

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