I had the distinct pleasure today of representing the American Cancer Society Cancer Action Network at a Congressional research briefing in Washington, D.C. I shared my survivor story and urged members of Congress to support the president’s cancer “moonshot” initiative.
I was on a panel with several great speakers, including a personal hero, Larry Kessler, Sc.D, who used to be the head of the National Cancer Institute and is now a professor of Health Services and an adjunct professor of Pharmacy at University of Washington Health Services. He spoke about the importance of Translational Research.
Other speakers included: Dr. Lisa Simpson, M.B., BCh, M.P.H., FAAP, President and CEO, AcademyHealth, who served as moderator; Joel W. Beetsch, Ph.D., Vice President, Patient Advocacy, Corporate Affairs, Celgene Corporation, who discussed clinical research; and Jan Eberth, Ph.D., Assistant Professor, Epidemiology and Biostatistics, The Cancer Prevention and Control Program, University of South Carolina, who talked about research from the basic science perspective.
After the event, Caroline Powers, from ACS CAN’s federal relations team, and I paid a visit to Sen. Lamar Alexander, who is chair of the all-important Senate HELP Committee. We had a great visit with the senator’s legislative aide and can look forward to big things from his office when it comes to cancer research funding.
It has been a wonderful day, and I am grateful to have had the opportunity to speak. Here are my remarks from the briefing.
“I’m grateful for the opportunity to be here to share my story. Honestly, I’m grateful to be anywhere today, which sounds like the start of some comedy shtick, but is true. According to my surgeon, I should either be dead or very sick from cancer. But I believe a number of factors, including cancer research, worked together to keep me alive.
“I was diagnosed with rectal cancer on March 27, 2012, five days after my 43rd birthday. I’d undergone a colonoscopy because I had been experiencing some weird digestive issues for about three months.
“Rectal cancer is rare in people under the age of 50, with only about 7 in 100,000 people hearing the diagnosis.
“My wife Sarah and I were shocked and more than a little bit freaked out. I use to work for the American Cancer Society and the American Cancer Society Cancer Action Network and had been there for almost 10 years at that point. At work, we talked about “cancer” as a concept every day. Still, hearing the word “cancer” being said about me was powerful and frightening. We had a lot to learn, and a whole lot of information, testing and treatment was about to come at us very, very quickly.
“Stage 3 rectal cancer has a pretty standard treatment plan: I did 55 days of oral chemotherapy combined with twenty-eight sessions of radiation therapy. Six weeks later I had surgery.
“Surgery day was a tough one, less for me at the time than for Sarah, our family and friends. I was either on the surgery table or drugged out of my mind or both. My friends and family had to hear the doctor say that the surgery was very difficult and the tumor was much larger than anyone expected, so my entire rectum had to be removed. In its place I got a permanent colostomy
“The doctor also said he wasn’t sure he got all the cancer out, and that everything depended on the pathology report. Everything. My prognosis and my future depended on what that report would reveal.
“It was a tense three or four days while I recovered and we waited for the pathology report. I had a lot of visitors to my hospital room, all of whom worked hard to put our minds at ease or to think about something else or just to laugh. Still, the waiting was difficult.
“When my surgeon bounded into my room four days later, he was beaming from ear to ear. He had the best possible news — none of the tissue he removed contained any living cancer cells.
“A month after surgery, I started 12 cycles of chemotherapy. My drug cocktail was FOLFOX. Every two weeks I spent half a day in the infusion room at my cancer treatment center, after which I would spend two days connected to a portable pump.
“In truth, chemotherapy could have been much worse than it was. I didn’t lose my hair, and I didn’t suffer many of the side effects other patients experienced. Mostly, I was really, really tired all the time. I also grew to dislike Mexican food – which thankfully reverted back after chemo.
“My last day of chemotherapy was February 20, 2013. On May 3, I was declared cancer free. And I’m happy to say that during a follow-up appointment two weeks ago, my surgeon said I can use the other “C” word — CURE — if all goes well between now and my August appointment.
“While that is tremendous news, cancer left me with several quality of life issues.
“First, I gained back every one of the 100 pounds I had worked so hard to lose during the two years before my diagnosis. Most of the weight came back during the intravenous chemotherapy phase of treatment. I was exhausted and urged to eat whatever I could tolerate. It was like giving a fat guy the keys to a bakery. Since I wasn’t experiencing nausea or vomiting, I ate like a king for six months. Welcome back fat pants.
“Second, my metabolism doesn’t work the way it used to. I run out of energy sooner than I did before cancer, and losing weight is tougher than ever. Being a few years older doesn’t help, I know. I think I’ve lost and gained the same 20 pounds six times since I finished treatment.
“Third, the oxaliplatin bit of the FOLFOX chemo cocktail left me with neuropathy in my feet. I recently learned that the neuropathy is a permanent condition, but I don’t let it stop me. I have become an obstacle course racing competitor despite my inability to feel the ground.
“Then, there’s that permanent colostomy thing. For some people, I know a colostomy is permission to spend the rest of their lives on the couch. They fear their appliances are going to leak or smell. I, on the other hand, had ostomy nurses who told me the colostomy didn’t have to hamper my active lifestyle. They said I could run, bike and swim with the thing, so I have. Yes, I’ve had leaks — colossal appliance failures, in fact. I’ve made messes in some pretty spectacular places but not Capitol Hill … yet.
“In spite of cancer and its permanent side effects, I have an amazing life. And, I hold out hope that cancer research will present solutions to my side effects. I imagine a world where an effective medication will be developed to alleviate neuropathy for people who have it and prevent it for cancer patients in treatment. More audaciously, I have a dream that my colostomy will no longer be permanent. I mean, if researchers can grow ear cartilage on the backs of mice, why not rectal tissue?
“Earlier this year, President Obama called for a “moonshot” to end cancer as we know it, a goal every bit as audacious the hope that I and other cancer survivors have. To be successful, the cancer moonshot requires funding. Some may ask, “why now?” The answer is simple: there has never been more progress and opportunity in cancer research than there is right now. To seize on this opportunity, we need Congress to provide the funding that cancer researchers in my state of Tennessee and across the country need to do their work.
“I am so grateful for the increase in funding that Congress provided to the NIH and National Cancer Institute last year. However, that cannot be a one-time thing if we expect to see sustained, meaningful progress in the fight against cancer.
“I am asking Congress to build on the support provided last year and provide the NIH with a $2.5 billion increase in fiscal year 2017, for a total budget of $34.5 billion, including $5.9 billion for the NCI as part of the Cancer Moonshot initiative.
“In addition, I ask Congress to support supplemental funding for the NIH and NCI through the 21st Century Cures Act, which has already passed the House, and the Innovation legislation, which is currently working its way through the Senate HELP Committee.
“Providing America’s scientists with the resources they need to pursue new and innovative treatment options will improve the quality of life for cancer patients and survivors. Fewer people may hear the words “you have cancer” with new prevention and early detection strategies. More importantly, lives will be saved. I hope Congress will do the right thing.