Coming to Terms with Cancer
The terrifyingly cataclysmic news of being diagnosed with a cancer like myeloma causes a daze; patients see lips making noises, vaguely hear them, but often don’t comprehend what’s being said.
Brad High knew that feeling well. He was diagnosed with myeloma in 1997, when myeloma treatment consisted of limited options. Some might be life-extending, but they would not be lifesaving.
By 2002, he had already outlived the 18-24 months predicted for him that was the norm then. That was pretty much the way it was for the previous 150 years, when myeloma was first defined. Significant advances were being discovered, predicted, and seemed achievable…for patients diagnosed years in the future, likely not for him.
Deep down, Brad knew he was going to die. He didn’t want to. He never said it out loud; gloominess was not his thing. It was obvious something was different when we had lunch on an early spring 2001 afternoon near the Senate side of Capitol Hill in Washington, DC. We were on a break between visits with Pennsylvania congressional delegation staff to supporting a doubling of funding for the National Institutes of Health (NIH) from $13.5 billion to $27 billion from 1998 to 2003.
On that beautiful spring afternoon, Brad expressed something I have heard in hundreds of variations since I learned about myeloma, “I don’t think I’m going to beat myeloma, but if I can help people down the line, then I want to do what I can. It might help me make some sense of this disease.”
Brad was in his mid-30s, in a committed relationship with his long-time partner, a professor at Haverford College in the Philadelphia suburbs. A stout man of average height, more solid than fat, Brad loved to bake and decorate cakes in his free time. A seemingly constant, soft, sincere smile was framed on his large, round, bald head.
Indeed, the more I got to know him, the more I became obsessed by the occasional appearance of obvious “dents” around the top of his head. I knew they were likely bone lesions caused by his myeloma, small, hole-like signs of bone destruction. The only good news – and it was very good considering the alternatives – was that the skull was not a weight-bearing bone, which would have made everything much worse, much like falling dominos.
Raised on the Oregon side of the Columbia River, downwind from the infamous Hanford nuclear processing plant in Washington. It processed the uranium used in the atomic bomb dropped on Nagasaki, Japan to end World War II. Brad was sure it was the source of his myeloma.
Active longer than any nuclear site in the nation before it was closed and entombed in cement in the 1990s, Hanford was indisputably linked to higher cancer rates in the region. It had been plagued by problems which included releasing incredible quantities of radiation into the atmosphere and ground water. He had reason to be suspicious.
When he was diagnosed, he learned being a male in his thirties made his case rare and dire. After a visit to the local Wellness Center, he worked with them to start a myeloma support group, when only about a dozen myeloma support groups existed in the nation. In the late 1990s, support groups in general had a mixed reputation among people who had never attended one. They could become gripe sessions that brought everyone down, or so the common knowledge went.
When he found out about the International Myeloma Foundation (IMF), they offered to help him hold meetings to educate myeloma patients. They would help make information accessible, with insights they couldn’t get anywhere else, not kvetching.
That was more his style. And soon other myeloma patients in the area—from southeastern Pennsylvania, New Jersey, and Delaware — were making their way to Philadelphia one Saturday a month. The reputation his group was building.
Soon after I got to know him, representing the IMF for a visit with his group in 1999, I took Brad to Washington, DC to advocate in Congress for myeloma interests to talk about cancer and public policy. We quickly became friends.
Since he had no children, he felt a bit lost in his first few Hill visits when other patients would take out pictures of their children or their grandchildren to show to congressional staff. After that, he started taking pictures of the cakes he made for friends’ weddings and celebrations. They were his “children,” another way to demonstrate his affection for friends and loved ones.
On Capitol Hill, he described a future he knew he would likely never see. One in which patients would be identified and treated according to their genetics. Science fiction might indeed become fact. Research would solve riddles once deemed too difficult to decipher.
He had to paint a picture in their minds because his reality and of others like him was not an optimistic one. Injecting the NIH budget with needed funds to do new things was essential to making it happen. That legislative goal was achieved in 2003, a year after Brad died.
Although NIH funding has barely kept up with the rate of inflation since then, much of what Brad described is either in use, was realistically envisioned, or inconceivable when he was alive. One of the things he talked about was the time lag between cancer research and drug development. It could take decades for discoveries to become approved drug treatments.
That lag has resulted in paying unprecedented dividends in myeloma patient survival. Twenty years after achieving the doubling, many discoveries in myeloma are blooming. Some were made possible and propelled by more NIH funding, as Brad explained to his state’s congressional delegation. In the time Brad had remaining, he added to the markers leading to unprecedented progress for myeloma and cancer patients today and far into the future.
If Brad were alive now and diagnosed with myeloma, he would face very different circumstances than 25 years ago. He would have genetic testing to determine what type of myeloma he had. He would be engaged in making decisions.
He would be encouraged to find clinical trials that might be appropriate for him without having to spend days and weeks doing futile research. He would be more focused on living his life than explaining to policymakers why more research funding was desperately needed. He would be focused on communicating with his physician to determine which treatment options were best for him. He would likely be alive and one day die like everyone else ever did or ever will, but not of myeloma.
The last time I saw Brad in the spring of 2002, his partner and I went to one of our favorite restaurants in Philadelphia, Alma de Cuba. Normally a boisterous place, Brad wanted to be someplace celebratory. Some weeks earlier, Brad swung for the fences with his medical team and had an allogeneic stem cell transplant—cells that came from a donor—which was effective way in treating many leukemias and lymphomas, but incredibly risky with little hope of success in myeloma. Unless one was “lucky” to have an identical twin; an allo from an identical twin would in later years be acknowledged as the best known therapy to treat myeloma.
It was obvious that he was not doing well. We did our best to mask our apprehensions. We felt this would be his last night out, although none of us would say it out loud. Brad died a couple of weeks later.
I think of Brad a lot these days. I know if he had access to what patients do today, he would likely be thriving, or at the very least, have promising options. When Brad was diagnosed, if one was truly honest, treatment for myeloma was a one-size-fits-all, let’s-throw-it-on-the-wall-and-see-if-it sticks kind of crapshoot.
Very few won. And it was usually temporary. Most lost. Their own rogue cells were in charge. Today more and more patients have their treatments guided by their genomics, which are as unique as fingerprints, to refine and tailor treatments. And knowing Brad, he would have been actively seeking out clinical trials to treat specific myeloma types based on a myriad of genetic factors only experts could decipher.
That’s the world of myeloma today, one that Brad, together with thousands of others, was crucial in creating. One that gives reasoned hope to all cancer patients, of how a once hopeless disease has become the best story in the world of cancer. It points the way to making all cancers treatable chronic diseases until cures are achieved.
The stories of people, ideas, hope, and irrepressible optimism outnumber those of hopelessness, failure, and tragedy that more commonly accompany the word “cancer.” Taken together, they are stories Brad would have loved to be around to experience.
Brad ‘s experience was not very different from what patients experienced during the first century and a half of myeloma’s story. In order to appreciate where we are today and going tomorrow, the next Substack article will go back to the beginning.
Photo: Detail, El Greco, The Agony in the Garden (11590-95), The Toledo Museum of Art