Arnie’s Rebounding World: The One Thing I Won’t Do
Published: Apr 9, 2014 12:18 pm
Having recently been discharged from the hospital after my third cycle of high-dose chemo, I was at the outpatient clinic at the hospital recently on a Saturday for lab work and a checkup.
The medical tech who was drawing my blood was a woman I have come to know. She has seen me walking in, dragging myself in, and being wheeled in through years of treatment. She has seen me through two stem cell transplants, a donor transplant, multiple rounds of chemo, and countless rounds of myeloma treatments.
While accessing my port, she shook her head and remarked, “You don’t give up do you. Is there anything you won’t do?” She paused and thought for a second and said, “I know what you won’t do: nothing!”
My wife and I laughed, but her statement hit me dead on. I hadn’t really thought about it that way, but she was right.
Up to this point, that has been my default position. When it comes to trying to manage my multiple myeloma, the one thing I have refused to do is nothing. There are times when this has meant pushing against advice and conventional wisdom.
On one occasion a couple of years ago, I was in a really bad spot with my disease. Nothing seemed to be working, and we were advised that I would not survive further high-dose chemotherapy. I thought, “We have to at least try. What are we going to do, nothing?” Fortunately, the chemo was successful beyond our hopes.
When told a donor (allogeneic) stem cell transplant was probably not going to be helpful, we kept pushing for it. I had to at least try. I am now 20 months post donor transplant.
Unfortunately, I have relapsed after the donor transplant and have had to continue to try to find some way to keep my disease under control. Doing nothing still just doesn’t seem like an option. After progressing on a regimen of Kyprolis (carfilzomib), Pomalyst (pomalidomide, Imnovid), cyclophosphamide (Cytoxan), and dexamethasone (Decadron), I have just finished three cycles of Velcade (bortezomib), thalidomide (Thalomid), and dexamethasone plus cisplatin, doxorubicin (Adriamycin), cyclophosphamide, and etoposide (known as VTD-PACE), which thankfully has been very effective in reducing my disease.
In a recent column, I had written about the compassionate use program and our effort to get access to the monoclonal antibody elotuzumab through that program. We were initially denied when Bristol-Myers Squibb, the company that develops elotuzumab, closed their compassionate use program for the drug.
The really good news is that through some tremendous efforts by one of my doctors, Dr. Ken Anderson (who by the way also refuses to give up), and the Multiple Myeloma Research Foundation, Bristol-Myers Squibb has reconsidered their decision and has reopened their compassionate use program for elotuzumab and I am now approved. So that is my next step.
I have always tried to seek other opinions, think ahead, research, and have a plan. Everything in medicine comes down to an assessment of risks versus potential benefits. However, as time goes on, I am willing to accept more risk and side effects in dealing with disease. It’s not a matter of courage or heroics. In my mind, there is just no other way to approach this. I don’t want to go down without trying everything I can. I don’t want to feel I’ve left any cards on the table.
Up to this point, I have been very lucky that I have responded when things seem to be at their worst, and I have been able to bounce back. I know that at some point that might not work out.
That brings me to the flip side to all of this, and that’s the one that really worries me. There may very well come a time when doing nothing is the right thing to do, when further treatment really is futile, or the risks so far outweigh the potential benefits, that it’s just not worth it.
As a practicing physician, I saw too many times what seemed like needless suffering in the name of heroic efforts to stay alive. I remember, long before I ever got sick, shaking my head and thinking I hope that’s not me. But will I have the wisdom and courage to recognize that time when it comes? It seems like that’s the really hard part.
I don’t feel like I’m anywhere near there yet. For now, I will continue to do anything and everything I can. When the time comes to do nothing, will it be a natural progression and obvious, or will the instinct to not do “nothing” cloud my judgment?