The ball has dropped. Confetti has fallen. And another year has com­menced. We are in 2019 now, but until last week, Daniel and I were still awaiting resolutions to 2018 problems.

In my last column ^[1] before Thanksgiving, I shared that my husband Daniel would be starting main­te­nance ther­apy for his myeloma. One of the goals of the treat­ment would be to help him achieve a partial or com­plete remission, which had eluded us after his au­tol­o­gous stem cell trans­plant in October. He was supposed to start the main­te­nance right away.

We met with Daniel’s myeloma specialist and discussed several main­te­nance op­tions. We agreed that Daniel’s treat­ment needed to be more aggressive than the typical plan, which for many means just taking Revlimid (lena­lido­mide).

Daniel’s specialist recommended treat­ment with Empliciti (elotuzumab), Revlimid, and dexa­meth­a­sone (Decadron). We are mindful that Revlimid is what gave Daniel pul­mo­nary emboli over the sum­mer in 2018, so his specialist recommended that Daniel con­tinue with the blood thinner Lovenox (enoxaparin), which he takes two times a day, until such time that he is taken off of Revlimid. The specialist also recommended lowering the Revlimid dose from the initial dose given during induction ther­apy, to lessen the risk of blood clots.

Having read Beacon readers’ suggestions that Daniel con­sider Venclexta (venetoclax), we asked the specialist about this drug as a poten­tial agent in Daniel’s main­te­nance ther­apy. The specialist wanted to hold this drug as an op­tion for us later on down the line, since in her opinion, with each sub­se­quent line of ther­apy, Empliciti becomes less effective. If Daniel’s myeloma progresses while on this pro­to­col, they will probably put him on Venclexta instead, because it is a drug that could benefit Daniel both now and later after he has had other lines of ther­apy. It makes sense to use up the ther­apy op­tions now that aren’t as likely to work later on. When the patient is 45 years old, you definitely need to think about treat­ment as a marathon, not a sprint.

The Empliciti infusions are more than six hours long. They can only be given after labs have been taken, analyzed, and discussed in fast-track appoint­ments. We were told to plan to be at the cancer center well into the evening on treat­ment days.

I have a friend who used to get her lym­phoma treat­ments at the same cancer center, and her six-hour treat­ments meant that she arrived at the hospital before 7 am for her labs and fast track visits, waited the usual two or more hours to get a bed in the infusion center, and then wasn’t through with her chemo­ther­apy until 10 or 11 pm at night. I’m hoping for the best, and ex­pec­ting the worst when it comes to the toll that this treat­ment is going to take.

During induction ther­apy, the weekly infusions were very stressful because we were up at the hospital all day, most of the time spent waiting, which is hard to do when you don’t feel well and you’ve been sitting in the same uncomfortable seat two hours past your designated appoint­ment time. I dealt with it then by thinking this was only temporary. It’s easier to know that you can get through something un­pleasant if it is for a finite period of time. But this is forever (or until the drugs stop work­ing, which of course is an op­tion that no one wants to explore).

Both Daniel and I are still work­ing too. Daniel used up all his short-term disability time, so he is back at the office and trying to juggle his weekly trips to the cancer center with his work. I am doing the same, since I always accompany him to the doctor and want to be there for sup­port. I find that a lot of my time is also spent trying to correct and arrange his schedule, since the cancer center’s priority is not to group Daniel’s multiple appoint­ments on one day, but rather to get him plugged into whichever slot has an opening.

With the plan of care decided, we were all ready to start the recommended main­te­nance ther­apy by December 5^th, but there were other plans in store for us.

Daniel had a persistent cough. This cough led to x-rays, which indicated pneu­monia. This led to CT scans with contrast dye, PET scans, and labs to rule out fungal, viral, and bacterial types of infectious disease. Daniel’s pneu­monia meant a delay in his treat­ment. That would’ve been bad enough, but based upon the notes documented on his PET scan report, there were nodules on the lungs and cysts on the adrenal glands that required further testing to rule out cancerous or myeloma-related disease. Before we could meet with the specialist to review the findings, Daniel also had to undergo a bron­cho­scopy. It involved a tube being placed down into Daniel’s lungs and the surgical removal of bronchial material so that it could be tested for pneumatic and cancerous in­fec­tions.

With all the tests concluded, we met with the myeloma specialist again last week. To say that I’ve been an anxious mess over December would have been an understatement. Between the tests that we didn’t have clarification on yet, my fears of some plasmacytoma or malignant cyst devel­op­ing on his adrenal glands, and my worries that Daniel would be hurt during the awful-sounding bron­cho­scopy procedure, December was a very tough month.

Last week we learned that all the test results came back negative, and that his pneu­monia was prob­ably a viral agent that they didn’t have a test for. The nodules weren’t concerning to his specialist, since Daniel’s cough had dramatically im­proved, his labs were stable, and he seemed other­wise healthy since his last visit. The adrenal cysts were most likely benign, the specialist said, but they would do another CT scan and compare it with the other three that he has had over the last six weeks. Assuming no new growth had occurred, Daniel will start his main­te­nance treat­ment this week.

For Daniel and his specialist, it was an anti-climactic, casual appoint­ment, like any other. For me, it was not. Was I relieved? Of course. But, just like that, we were on to the next thing. It was time to sweep a month of worry under the rug and get ready for what comes next. No venting. No re­lease. Just, “next, please.” There are times when I think that I’m just not cut out for this. I’m simply too attached.

If I had any resolution for 2019, it would be to find a way to disconnect from myeloma.