In late March 2019 while I was walking on the beach in Mexico, drinking and dancing to the local bands, relaxing and celebrating my 55th birthday, I had no idea that one week later I’d be diagnosed with Plasma Cell Leukemia (PCL), an aggressive and terminal stage of multiple myeloma. When my wife, Kati, took me to the hospital I was 24-48 hours from death. My kidneys had shut down, I was anemic, my liver and my thyroid were failing. The cancer had just about beat me and I didn’t even know I had it. Fortunately, my wife saved my life by urging me to go to the hospital. Within hours, I started chemo.
PCL is a rare cancer for which today’s medical community has no solution. It is a terminal diagnosis and I am undergoing chemotherapy to maintain the cancer as much as possible. I am blessed to be having a comfortable chemo experience with minimal reactivity to the medicine. I have no fear about whatever comes next and I lean into all the possibilities for my best life. The chemo and all that goes with it have stabilized me for the time being but it’s just a matter of time, according to the doctors, until the cancer becomes non-responsive.
In December 2019, my oncologist informed me that the most important number we follow has elevated and that is not the preferred direction. It’s a small enough rise that it could just be a standard fluctuation, but since I’ve not had unfavorable fluctuations before, it’s a point of concern and something to be monitored. It can mean that the new regiment isn’t working as expected or it could mean the traveler in my body is getting smarter. I am awaiting to find out more when I get my next bone marrow biopsy. My doctor has also put me on a list to be considered for a CAR T-cell therapy trial, however, I’m not sure I want to pursue it because it is a long way from being predictable, stable, or even curative.
My goal is to not become a full time patient. I love my life, but I’m not attached to my time here; I’m focused on my quality of life. I don’t want to be addicted to just one more day, or six more months, or even another year. That’s not important to me because I know what that year can look like. As long as I continue to feel good, I will continue on treatments. As soon as the chemo becomes a struggle, I will stop. Once I stop treatment, I have been told I will transition within 6-12 months.
Regardless of how my situation moves along, I’ve come to appreciate the comfort that a medical aid-in-dying law in my home state of New Mexico would bring to me. There is tremendous, almost inexplicable, comfort in knowing that I wouldn’t have to physically suffer beyond my preferred threshold. It would also provide comfort to my survivors. Terminal illness is very difficult for everyone involved. It stresses every aspect of the patient and their caregiving community. To be able to plan and joyfully move into my transition relieves stress and grief for everyone.
Before my diagnosis I was in favor of medical aid in dying and I was sorry the bill got so close in the last legislative session but ultimately fell short. I love my life and continue to work with all kinds of modalities to find my perfect health again but I recognize the science behind my condition and accept what is yet to come. However, my wife, children, parents, siblings, friends that are having this experience with me also deserve relief from watching a loved one suffer against their own best preference.
I hope New Mexico legislators make the right decision in the future and make medical aid in dying available to me and its other terminally ill residents. It is simply an alternative for those who feel it is the right choice for them. No one would be forced to choose medical aid in dying but what a gift for those, who for whatever reason, feel this is right for them. It’s not going to be the person who doesn’t support medical aid in dying, but let’s make it available to dying individuals who want to avail themselves of the option to avoid further pain and suffering for themselves and their loved ones. Everyone deserves a compassionate option.
Albuquerque Journal – Time to make your end-of-life wishes clear