In September, I wrote about a planned meeting with my myeloma specialist and what that might reveal about the effective­ness of my current treat­ment of Darzalex (dara­tumu­mab). Two weeks before the road trip to Minnesota to meet with my specialist, I’d finished the first part of the regi­men, which was one in­fusion one time a week for eight weeks.

My husband and I compressed this road trip more than usual, both coming and going. A close friend’s memorial service took the Saturday we’d normally have used for driving and visiting family. All the same, we managed to squeeze in every­thing from Chicago hot dogs to a home­made sour cherry pie to the Effigy Mounds National Monument to Burr Oak, Iowa (bonus points for figuring that one out) to dinner in Minnesota with a long-time, close friend the night before my appoint­ment on Tuesday.

I have been a quarterly patient at my myeloma specialist's cancer center for over two years now, so I am accustomed to the rhythm and pace of the appointment. The specialist walked into the examining room, sat down by me, asked me how I felt, listened carefully, looked at his computer screen, made one call to some­one to ask for my M-spike, look at the screen one more time, then turned, looked at me, and said ...

“Your numbers haven’t changed since May. Your M-spike is at 1, where it was in May.”

He went on to discuss other lab numbers, but I was still back at his first sentence. Un­changed since May. Since May, I’d had a two-month drug holiday, then the first eight weeks of Darzalex.

Unchanged since May. The only thing that kept me from falling off the couch was that I’d had some inter­mittent night­time episodes of the myeloma feeling, that odd, unique physical sensation that it has always evoked in me, and it had crossed my mind at the time that maybe the Darzalex was not holding all the perimeter defenses.

My myeloma specialist went on to discuss concerns and options. His concern? That with my starting the every-other-week part of the Darzalex regimen, effectively halving the dose of the drug, the myeloma would bloom and I would free fall into a major relapse. Options? Add another drug, an oral one, on top of the Darzalex. Revlimid (lenalidomide), Velcade (bortezomib), and Ninlaro (ixazomib) were all mentioned. But not yet.

“I want to see you again in 12 weeks,” he added.

That was a new twist. Usually, this oncologist has been pretty general: “Come back in three or four months, whatever works for you.” But this was specific: 12 weeks.

Afterwards, my husband Warren and I walked out of the appoint­ment and to the elevators in dead silence. We rode the elevator ten floors down in silence and walked two blocks to our car holding hands but saying very little. That is pretty much our modus operandi after appointments with the specialist, because there is almost always a curveball.

Warren and I headed back to Ohio with the same intensity we’d driven to Minnesota. Leaving the state late in the afternoon, we crossed the Mississippi three times that after­noon and evening to get to our night’s stop in Galesburg, Illinois, paid a call on Carl Sandburg (buried in Galesburg) the next morning after we met with a col­league of Warren’s for breakfast, and then dashed across Illinois, Indiana, and half of Ohio to make it home before Rosh Hashanah started at sunset on Wednesday.

We made it with an hour to spare. I could revisit the appointment with my specialist later.

The following week we met with my local oncologist, Tim, who reviewed the reports and labs from my specialist, then talked about quality of life versus numbers. Tim is reluctant to take steps to im­prove the numbers if the result is up­ending the gains in my quality of life. I am too. I started the next round of Darzalex. I’m slated to return to meet with my specialist in mid-December, almost 12 weeks to the day of my September appoint­ment. (Try finessing that with our unusual (mine) and demanding (Warren’s, especially in December) schedules. Our trip will be even more com­pressed in December!)

And I’ve gone on with the rest of my life. I posed the question to Tim, one that I did not think of while meeting with my specialist, and one that Tim had no answer to, whether this is what myeloma looks like at 13 years out. Or, given the uniqueness of myeloma in each and every one of us, is this what myeloma looks like in me at 13 years out? No gains but no losses. If that’s the case, then let me go on with my life. Why not? I have been writing a lot more lately, concentrating on my poetry, and that is on my mind. The myeloma conundrum can wait.

I’m a huge fan of Carl Sandburg (hence the stop in Galesburg), a poet who has fallen from public aware­ness for no good reason. One of his poems, “Horse Fiddle,” starts with this line: “First I would like to write for you a poem to be shouted in the teeth of a strong wind.”

Excuse me while I go write a poem to be shouted in the teeth of a strong wind.