The doorbell’s back.
That’s what I call the round-shaped, intravenous infusion entry port that was carved again into my upper right chest in September and initially more than a decade ago, in 2011, after I was diagnosed with terminal stage multiple myeloma.
MM is an incurable blood cancer that overtakes healthy plasma cells and depletes the body of much-needed white blood cells, leaving the immune system extremely vulnerable to infections and life-threatening illnesses like pneumonia.
More than 34,000 people in the United States are diagnosed with MM annually, according to a 2022 American Cancer Society estimate. Roughly 12,640 die of it every year. At the time of my diagnosis, according to data, more than half of people diagnosed in Stage III lived at least another 3½ years.
It has claimed the lives in recent years of notables like Colin Powell, who died of complications from COVID-19 as he was fighting the blood cancer; it also killed Walmart founder Sam Walton and one-time vice presidential candidate Geraldine Ferraro. KARE-TV recently chronicled award-winning journalist Boyd Huppert’s successful year-long treatment after his MM diagnosis. He is now where I was a decade ago.
But after a little more than a decade of hibernation following aggressive chemotherapy, two autologous stem cell transplants and several hospitalizations to combat pneumonia and other high-risk illnesses, my once-dormant cancer nemesis gradually awoke this summer.
My oncologist, Dr. Mark Wilkowske, who directs the Frauenshuh Cancer Center in St. Louis Park, detected the gradual spike in cancerous plasma cells, and a bone marrow biopsy confirmed it in September. I was taken off Revlimid, a cancer-fighting drug I ingested daily since 2012.
Given that MM has no cure and most survivors relapse, I knew it would come back. But hearing the word “relapse” is still a jolt for me and many others in the MM and cancer-survivor world. It heralds another unwelcome call to arms, both mental and physical.
One of the first things I did was review and update my will, health care directive, beneficiary financial records and cremation/funeral arrangements. Nothing fancy. My no-frills cherry-red cremation box is patiently waiting in the basement, where it’s been for several years now.
My folks will decide service, location and where that box with my ashes will go. The only addendum request was adding two of my favorite pieces of solemn but soul-stirring music — Antonín Dvořák’s New World, Symphony 9, Largo segment, and Samuel Barber’s Adagio for Strings. If there’s a celebration-of-life gathering, I hope they also throw in Rubén Blades, El Gran Combo, Santana and Earth, Wind and Fire among others to lighten the service playlist, but that’s up to them.
The second thing I did was relax. I’m not the woe-is-me, why-me type of person. I’m approaching 69 but a long way from throwing in the towel. This relapse, or recurrence, was caught early, unlike the first time when up to 80 percent of my plasma cells were already cancerous by the time of diagnosis detection.
Wilkowske recommended a treatment cocktail of Carfilzomib, a chemotherapy drug; Daratumumab, a monoclonal antibody; and Decadron, a steroid. Such a cocktail, which has seen good success in combating relapses, was not around when I was first diagnosed.
I’m currently into my sixth week of treatment that will last months. Other than night-following-treatment insomnia and leaving my voice sounding like Don Corleone for a few days, the cocktail regimen is tolerable so far. If the treatment doesn’t work, I could be a candidate for CAR T-cell therapy, which will require once again carving up the left chest to insert the two-headed snake Hickman IV port.
I feel good. I shoot hoops and regularly work out at the gym. I continue to live life, surrounded by an incomparable caretaker wife of 44 years, two loving adult children, and an inner circle of close friends and distant relatives.
I write on occasion and volunteer as a member of the Angel Foundation’s Diversity, Equity and Inclusion steering committee. The Twin Cities-based nonprofit provides financial, emotional and other resources to cancer survivors and their children.
I draw inspiration from others dealing with similar challenges. They include David Gonzalez, also an NYC-raised super rat, as we call ourselves, and a prize-winning New York Times writer/photographer and fellow MM survivor. There is also former Pioneer Press newsroom colleague Mike Sweeney, who wrote me a touching email after he learned of my relapse.
Sweeney, 78, a Vietnam War combat Marine veteran, was diagnosed in 1997 with spinocerebellar ataxia, an incurable genetic disease that affects the nervous system. The doctors told him then he would be immobilized and die within a few years. He retired several years ago after a long career in journalism and as a newspaper union leader. I visited him recently at the Minneapolis Veterans Home.
“Like you, I keep on living my life even though the docs said I would be dead by now,” Sweeney wrote in the email.
Is this cancer a fight? An ordeal? A challenge? A journey? Yes, even a blessing, given a daily appreciation of little and big things? It’s all that. The apt descriptor depends on the mood and the day. Like Sweeney, we both will continue to punch up at what’s trying to put us down until the final bell. Pa’lante (Forward).
