multiple myeloma (MM)
My personal story with blood cancer started in 2020 but nobody really knew how long it was brewing. A day came when back spasms started raging and my Primary Care Physician (PCP) sent me to physical therapy (PT). It didn’t take more than 1 visit to PT to know that was a bust and finally my PCP sent me to the Hematologist. This is where my blood cancer story becomes reality, in no more than 5 minutes, the Hematologist sent me directly to the Huntsman Cancer Institute.
As I arrive at the cancer hospital, it was like a race car going into the pits during a race, a team of people surrounded me and started their analysis. More blood work, an X-ray, some scans, and an immediate bone marrow biopsy (no anesthesia except for the morphine flowing into my veins). I did hear the doctor say “give me the sharper trocar” as he did the biopsy. So, he started with a dull one! The next thing I remember, the Oncologist is standing there and said, “you have cancer, multiple myeloma (MM)”. I have one question, “multiple what??”
The happiest part of this story was last year, December 2021, when my daughter, Kimberly, and I signed up for the Shred for Red event. We were last minute entrants and with only 48 hours till the chair lifts started spinning at Deer Valley Resort, we somehow raised nearly $3,000! This was a true celebration and blast for all the bib wearing folks around the mountain. For me, it was a personal milestone, being back on skis, just 8 months after a stem cell transplant. Weighing in nearly 50 pounds lighter and ending up with a cancer-ridden spine that multiple myeloma nearly destroyed, but I was able to wear the survivor arm band, and Shred for Red was the highlight of 2021 for me, my wife Carol, and children, Kimberly and Cameron.
If it were not for my wife Carol, who took on the selfless role as a “caregiver,” the 24x7 companion and savior, I would not be able to tell this story today. I am also forever indebted to The Leukemia and Lymphoma Society (LLS) for the financial support. The grant I received has kept us afloat, where the prescribed medicine costs $981 per pill. I need to take 1 per day, for 21 days each month. Leaves you stunned and wondering, how does this math work? Thanks to the grant money, the focus was on getting proper treatment and not about how are we going to pay the monthly bills! LLS is a new member of my team and family. Yearly treatments, to stay in remission will need to continue. Each year, Shred for Red allows us to join friends and family, in a fun way, to enjoy the outdoors and make ourselves visible, carrying forward this important cause.
I am also actively participating in a clinical trial, which doesn’t offer any financial breaks, oddly enough, but it does give me the opportunity to start to give back. Each day I take a chemotherapy pill and I complete monthly visits at the cancer hospital to run tests and evaluate how the treatment is working. I hope to be on the winning team of course since the trial is an analysis of two different treatments, in hopes of finding the best regimen for patients in remission. I am proud to be able to contribute to the cause, to advance our knowledge and create potential new standards of care for blood cancer patients around the world.
It has taken a while to process my own story. There is this 18-month blur and almost a gap in my life. Lifelong friends in NY, our amazing families back east, and Park City best friends were helping us every step of the way. Recently, Carol and I were at brunch with Marty and Jim, who helped us during my lowest days, bringing us meals. At brunch, Marty asked, “what were you thinking when you went through treatment” and the story unfolded again in my head, I remembered it all.
Carol was in LA moving Cameron into his first apartment, Kimberly at work in Park City, and they all get the news regarding my diagnosis. The shock waves travelled through the family, none of us knew anything about multiple myeloma and what to do next. COVID is raging and no visitors are allowed in the hospital. My wife makes the long drive, returning from LA to Park City, across the desert, stunned, silent, confused, just staring at the highway for the 10-hour drive home.
Thanks to organizations like LLS, and the donors and research, there are newer techniques to treat multiple myeloma. My Oncologist started with a cocktail of chemo drugs and some radiation treatments in preparation for a stem cell transplant. What is a stem cell? We all had to learn. The radiation was used to zap some trouble spots. Multiple myeloma is a blood cancer and its very destructive; in my case it attacked the full length of my spine. Softening it, weakening it, and leaving me 1-2 inches shorter and with 4 compression fractures. The Oncologist said, “you have a lot of disease in your body.” I hated those words.
[The drugs] created a 1.7cm clot in my heart and clots in my lungs. The stem cell transplant is called off. Each patient must be as strong as possible to go into a transplant, clots will get you nowhere. As a family, the fear and confusion wreaked havoc but after months of blood thinners and scans, the clots were resolved. It’s time to get ready but now you need about 5 million good stem cells and where do they come from? The doc says 2 or 3 days on a machine, 6 or 7 hours a day and we can harvest good stem cells from your body. Sounded painful. After 2 days, hardly any good stem cells were collected. Day 3, not enough yet, just one more day. Day 4, nope, not enough. An unprecedented 5th day, on a Saturday, never done before, and the 5th day got me to just over 5 million stem cells. If I couldn’t produce enough good stem cells after 5 days, they would call off the collection process and my treatment would have taken a new direction. I’m exhausted, 5 sequential days and nearly 40 hours on a machine, the nurses are exhausted watching the attempts, and the machine, who’s sound haunts me, is finally shut off.
I did, of course, make it to the big event, a stem cell transplant, a fresh start to life. The nurses actually sang happy birthday to me on transplant day because it’s a biological event. The final chemo treatment, so toxic, yet necessary, wipes your bone marrow clean. For me it was 16 days in the hospital tracking to see if the new stem cells graft and become part of my body. Transplant day is thus a new birthday. As fun as that sounds, the sickness, the weight loss, the foggy effects of lingering chemo, all take months and months to resolve.
Our lives were truly turned upside down and inside out, creating that 18-month gap or at best a blur. I can only hope that the on-going research and events like Shred for Red have a lasting effect, to bring new treatments, to help blood cancer patients around the world, stopping cancer in its tracks and bringing us to the day we can finally say, there is a cure!