Back in November, 2014, I wrote a column ^[1] about the book Being Mortal by Atul Gawande. It is a book that many of you have read; it has also been discussed in other columns by other Beacon columnists. I still encourage lots of people (well, everyone, pretty much) to read it.

Right now, this book and my response to it are very much on my mind.

I just finished my first eight weeks of treatment with Darzalex (dara­tu­mu­mab). I will soon visit my myeloma specialist for a quarterly checkup, and my local on­colo­gist (the ever-present Tim) and I are still debating whether to have the ninth Darzalex infusion before the visit with my specialist, or when I come back and see him the week after.

Other than the first, shall we say "eventful," Darzalex infusion session, every other infusion has gone smoothly and without incident. Once the Benadryl (di­phen­hydramine), one of two pre-medications, hits me, I doze through much of the session. My body has gotten used to the rhythms of the days after infusion; my lowest day of the week is two days afterwards.

I have noticed, almost out of the gate, that I have felt better (better!) since starting Darzalex than I have felt in over five years. It is so odd to feel not just “okay,” but downright “good,” that it took me a few weeks to get used to the sensation. My husband Warren has noticed, and everyone from friends to colleagues at work has corroborated, that I am more alert, less rundown, more energetic, and just more like “the old April” (that would be the post 2004 / pre-2012 April, just to specify a model number).

When I last saw Tim and said “I have felt better the last five weeks than the last five years,” his face all but split from grinning. Afterwards, I told Warren, “Tim has been waiting five years to hear me say that.” Then I thought about my statement and reworded it: “I have been waiting five years to say that to Tim.”

So what better time to revisit Being Mortal than when I am on an upswing?

The core for me of Being Mortal is the four questions that Gawande feels any doctor working with end-of-life issues should ask the patient. Those questions are:

• What is your understanding of what is happening to you (medically, physically)?
• What are your biggest fears and concerns about what is happening?
• What goals are most important to you?
• What trade-offs are you willing to make or not willing to make?

Those questions are never far from my mind with every change in treatment. With the visit with my specialist looming, I want to review yet again where I stand on my answers.

When I first wrote about the questions, almost three years ago, I wrote that Tim was uncomfortable when I have raised the topic of dying. He clearly didn’t want to have that conversation, focusing instead on treat­ments I hadn’t tried yet.

My, how times change.

Tim and I have discussed, not with urgency and not in great depth yet, my position on quality of life versus quantity of life. As he pointed out to me, oncologists are trained to keep their patients alive for as long as possible. “But,” he added, “you don’t worship at that shrine.” Increasingly, including when I began this latest regimen, he and I discuss quality of life first.

I may have to speak over my specialist when he and I discuss my progression and my disease.

When I visited with the specialist in May for me to be restaged, he made the comment, twice, that he “needed to keep [me] alive for two years.” It was such an odd statement that I had to ask: What was magical about two years?

It turns out that two years is his estimation of when CAR T-cell therapy, a new form of immunotherapy, will be approved as a treat­ment for multiple myeloma. In this country, the Food and Drug Administration just approved a CAR T-cell therapy for a form of leukemia. Trials are ongoing for the therapy's use as a multiple myeloma treatment.

What the specialist did not ask was whether I am interested in or willing to try CAR T-cell therapy, should it become approved. For now, my answer is no. To me, the risks of the new immunotherapy seem very high, and the likelihood of it working low. I made a comment that it was not appealing to think about a drug that works for only half of the people taking it, and he was swift to say, “Oh, we would be thrilled if the results were that good.”

See why I am revisiting my four questions in light of my upcoming trip?

In the end, what does or does not happen with my treatment will rest with me, with input from Warren and from Tim. What I know now is that I feel good. I feel better than good. Since writing my last column, I have baked 24 loaves of zucchini bread and two (two – count 'em – two!) lemon tarts. While I am writing this, dough for homemade bagels is rising.

Life is good.