ALBUQUERQUE, N.M. — Last March, I wrote a column about a brother and sister diagnosed with cancer within days of each other. It was, to my mind, both horrible fluke and uplifting story because of the support the siblings gave each other in their fight against the same deadly foe.
Some of you didn’t pay as much attention to that because you focused on a photo of the brother’s T-shirt, which featured a middle finger and a fanciful facsimile of the F-bomb, both aimed at cancer.
Oh, the calls and letters that came in – some offended by the T-shirt, others offended by the people who were offended by the T-shirt.
Among the latter was Michael Snyder, an Albuquerque man for whom the shirt has personal significance.
“I find the word ‘cancer’ offensive, not to mention I find having cancer offensive,” he wrote.
Snyder, who said he owns a similar T-shirt – and I would note, we are not publishing that photo again! – has chondrosarcoma, a rare cancer that affects the bones and joints and claims about 600 newly diagnosed patients each year in the United States.
The 58-year-old studio engineering manager at KNME-TV has been fighting that cancer for 11 years, and it has been a brutal battle. Years ago, he lost most of his left leg and the use of his right hand, though, thankfully, he is left-handed and able to get around in a wheelchair.
Six years ago, the cancer metastasized into his lungs. His doctors told him the battle was over. There were no more surgeries, no more treatments, no more hope left.
But like the slogan on that T-shirt, Snyder and wife, Sarah Barton Snyder, had a few choice words for cancer.
“Sarah and I looked at each other and said not only ‘No,’ but ‘Hell no,’ ” he said. “So we kept fighting.”
That fight took them this week to Washington, D.C., where they were among those invited to the Cancer Moonshot Summit, a daylong conversation headed by Vice President Joe Biden among cancer researchers, patients, providers, oncologists, drugmakers and advocates aimed at speeding up the rate of progress in cancer research.
It’s a conversation, they said, that is long overdue.
“It was the first time they had all these major stakeholders in one room listening to one another and learning how out of touch they are from each other and from the cancer patient,” said Barton Snyder, a kindergarten teacher. “It was like a wake-up call.”
The Snyders were there not only as people directly affected by cancer but as representatives of Lazarex Cancer Foundation, a national nonprofit that assists cancer patients in finding clinical trials, then helps pay to get them there.
“Basically, it is what saved my life and saved us from the poorhouse,” Snyder said. “We are a nation of millions with thousands of towns and cities and clinical trials in just 10 spots, but there’s no insurance, no money to cover the cost of getting there or paying for a family member to get there.”
Travel costs as a hindrance to participating in clinical trials – and possibly surviving cancer – were an obstacle many in the groups the Snyders spoke with had not considered.
“They were just more surprised, I think, shocked,” Barton Snyder said. “Clinical trials are where the cures are. Never had they realized how hard it is for people like us to get to them.”
Add to that, they said, how hard it is to find the right clinical trial to fit the particular cancer. Information, they said, is not shared among research centers and hospitals. A publicly accessible database, ClinicalTrials.gov, which is run by the National Institutes of Health, is too cumbersome to easily navigate.
“To a big extent, you’re on your own,” Snyder said. “We were fortunate enough to find a couple of doctors willing to help us, and then we had the foundation, but you have to be tenacious as hell.”
Moonshot was just the start of a bigger conversation. The Snyders said they met Dr. Cheryl Willman, director and CEO of the University of New Mexico Comprehensive Cancer Center, at the summit and spoke to her about helping her patients connect with of out-of-state clinical trials. (The New Mexico Cancer Care Alliance helps patients find clinical trials within the state.)
They also said they hope to keep sharing their experiences, telling their story to those who are in the battle against cancer. (I’ve included their email in an information box that accompanies this column.)
So here is the next chapter in that story: Snyder is nearing his second year in his sixth clinical trial, this one at the University of Colorado Cancer Center – Anschutz in Denver. Since he began the experimental drug treatment, his tumors have remained stable with almost no growth or movement and none of the usual side effects of cancer treatment such as hair loss and nausea.
“Except for the cancer, I’m textbook healthy,” he said.
I hope they brought home souvenir T-shirts from Washington, D.C. I wonder what those shirts say.
UpFront is a daily front-page news and opinion column. Comment directly to Joline at 823-3603, firstname.lastname@example.org or follow her on Twitter @jolinegkg. Go to www.abqjournal.com/letters/new to submit a letter to the editor.