With my initial diag­nosis of multiple myeloma 14 years in the past, I am an outlier under any definition of the word. And the farther out I am from that initial diag­nosis, the more I baffle my general oncologist, who has been with me since the start, and my myeloma specialist who I see every quarter.

There are many factors that make for this baffling situation.

First, I am 14 years post diag­nosis, a chronological benchmark most myeloma patients never reach.

Second, back in the earliest days, I had a tandem stem cell trans­plant that proved successful at the 45-day mark (“remission”) and had utterly failed at the 90-day mark. That alone should have greatly diminished the likelihood of my reaching even the five-year mark, let alone sailing past it.

Third, to add to the “quirky things about April,” I have had no bone damage – no tumors, no breaks, no holes – despite the lengthy time I have had the disease. The mild osteoporosis that was diag­nosed last fall was attributed to the large amounts of steroids I’ve taken, particularly in the early years when the steroid dosage was high. But every radiologist agrees: no myeloma damage to my skeleton.

Fourth, for months (well, 18+, but who’s counting?), my labs have stayed absolutely flat. No progress against the myeloma on the one hand, no ad­vancement by the myeloma on the other. This little piece of data bothered my specialist enough that he ordered a PET/CT scan to rule out “extramedullary disease,” which in lay terms means the myeloma has left my bone marrow and is congregating elsewhere in my body, usually but not necessarily near a major organ.

Note: The PET CT scan, which was done just this January, came out clean on all myeloma fronts. That good news caused my specialist to restate how he views my myeloma: “persistent.”

And then there is the asthenia. General definitions of asthenia boil down to this: “loss of energy and strength.” My general oncologist is bothered by my asthenia, which leads me to lie down beside still waters, or, in my case, slouch into an armchair as soon as the supper dishes are done, and read for the rest of the evening. Other evening activities are markedly reduced; weekend activities are likewise impacted.

As I am married to a professional musician, you can imagine this makes for some in­ter­est­ing math­e­matics. In fact, much of the time I am not gainfully employed by our Juvenile Court is spent work­ing through elaborate equations: “Which is greater: the energy expended driving to and having dinner with friends who live 35 miles away, or the energy expended by having those same friends for dinner with me preparing most of the meal, in­­clud­ing baking dessert? Solve for x, with x being how exhausted and/or ill I will be the fol­low­ing day.”

I was an excellent math student, so much so that I carried an A in calculus in college four years after I had last set foot in a high school math class. But even the very best math skills cannot predict the exhaustion and the illness. There is a feeling, one which I have written about before, that is present deep within me and accompanies me every­where. When I am engrossed in a project and my adren­a­line is running high, that feeling, which I simply call “the myeloma,” recedes. When the activities of daily life (work, making meals, hanging laundry) have ended for the day, the myeloma comes sweep­ing back. It is particularly forceful in the middle of the night, sometimes waking me. Ironically, it is so forceful at those times that I quickly fall back asleep from the sheer weight of being sick.

The asthenia really bothers my general oncologist. My specialist is more accepting of it. He is more bothered by the flat-line labs. Their dif­fer­en­t takes on my con­di­tion remind me of a saying my torts professor told us first-year law students our very first day of class as he spoke about the dif­fer­en­t resources (textbook, hornbook, study guide) that were avail­able to us: “A man with one watch always knows what time it is. A man with two is never quite sure.”

Note: I went to law school long before we carried our time on our phones. Now one is always, always sure what time it is. But that doesn’t mean two oncologists will ever have the same time.

Asthenia aside, flat labs aside, “persistent disease” aside, even the strong myeloma feeling aside, what do I make of this? What do the doctors make of this? How do I make informed, intelligent choices about my treat­ment options (if any)? How do they make sense of what options (albeit limited, given my longevity) to discuss with me? (The longevity plays a role in this regard: most of the testing of new treat­ment lines is done on patients who have been diag­nosed much more recently than I have. There is no indi­ca­tion, and no way to predict, if a treat­ment would have the same impact on an outlier.)

At the most recent quarterly appoint­ment with my specialist, he, my husband Warren, and I hit a quiet moment while we all weighed my history, my treat­ments to date, what we know did or did not work, whether any options are viable in the future, whether those same options were personally acceptable. Then I posed some­thing that had been dancing around the perimeter of my thoughts for some time.

“So maybe this is just what myeloma looks like at 14 years out. And you [my specialist] don’t know because you don’t see it.”

My specialist looked at me and smiled, giving an almost imperceptible shrug.

“You could be right. Maybe this is what myeloma looks like 14 years out. At least in you, April. See you in three months.”