28 Years Together…But Not Nearly Enough

Andy and I had been together since college. He was very healthy, active, and athletic – think weightlifting, skiing, mountain biking, backpacking, rowing…”armchair athletics.” If you ever needed a favor or had a question (about anything), Andy was the guy to call! 

From the time he was a baby, he had “stomach issues” that had never been diagnosed.  He’d get bloated after formal meals, where he was sitting up straight. Sometimes he would vomit afterwards, and then he’d be as good as new and could eat all he wanted. If he ate a formal meal but then sat leaning back in his chair – no problems! No doctor thought this was a concern. From childhood to 47 years old, the symptoms never changed. He’d recently started a new job which required a physical – the most comprehensive physical he’d ever had, he said.  He passed with flying colors!

Not too long after that great physical, he felt some bloating that didn’t go away as quickly as it should have. After a day or so, he went to his doctor. By the weekend, we ended up at an urgent care clinic. They took an x-ray and could see pockets of air. They told us that this meant that there was a complete blockage of his colon and to go directly to the emergency department. Never once did we think that he’d be getting a diagnosis of stage IV colorectal cancer. Never once did we think that the next day he’d have a colostomy bag. Never once did we think that he’d then be on chemotherapy for life.

The day that he told me that we were fortunate, and I looked at him quizzically. Being in New England meant we had access to some of the best care available. We had access to good insurance that, living in Massachusetts, we knew wouldn’t disappear even with threats to slash the marketplace insurance programs. We were savers and could afford to be out of work and spend time together. He, of course, was right. We were fortunate – we had 28 wonderful years together – and we’d experienced so many things that so many people never get a chance to.  

But…he was too young for a screening colonoscopy. Too young and too healthy for a doctor to consider bloating to be anything more than a mere inconvenience. Since the bloating had never changed from the time he was a baby, he had no symptoms to cause concern. And, even with access to the best healthcare in the world, we ran out of options. After Folfox, Avastin, and Folfiri, TAS-102 (later named Lonsurf) became available in time for us to use it. But when that caused more damage than it provided benefit, we had exhausted our options.

I’m a part of the RATS program because I want there to be a day no doctor thinks that their patient is too young for colorectal cancer and a day when no one runs out of options.

KNOWLEDGE IS POWER

While Andy was sick, I did a great deal of research on colorectal cancer and its treatments.  I ran across Fight CRC and the RATS program. I stayed up-to-date by reading articles and watching the videos provided in the Fight CRC resource library. I attended every webinar that I could in order to learn about the newest and most promising updates from ASCO, including information on the most promising clinical trials. I wanted to know all that I could so that we could be informed. I was very interested in the RATS program, but my priority was to spend as much quality time with Andy as possible. We did that for over three and a half years. 

When I then found myself alone, I decided to take a year for myself to determine what my path would look like. During that time, while attending Call-On-Congress in 2018, I applied for the RATS program. Initially I was nervous that I would learn about treatment options we hadn’t tried – but that didn’t happen, and I was reassured in the path that we had followed. 

Now, having been part of the RATS program for over a year, I’m saddened by the fact that there are no new treatments that we missed – too late for me and Andy – but for all of the new friends who still fight. This drives me to continue to learn more, to be able to put a face to colorectal cancer for researchers, especially young researchers who are just starting out and are excited about the possibilities that they see. Armed with facts and continued knowledge gained through RATS, I intend to continue to advocate for a cure for colorectal cancer!

MAKING AN IMPACT ON COLORECTAL CANCER RESEARCH

This past year I attended the 2018 Duke University/Harvard-MIT Center for Regulatory Science’s Anticancer Drug Development Workshop for Investigators and Patient Advocates and felt it was incredibly impactful to the colorectal cancer community. This conference is geared towards young investigators, individuals who are at the beginning of their research careers. 

The speakers were great and spoke about the drug development process, new developments, and the advocate’s role in clinical trials. What really made the conference stand out was the interaction with the investigators. As research and patient advocates, we sat at lunch with young investigators. They told us their stories. We told them ours. They actively listened, asking questions, eager for more information. They were enlightened by first person accounts of real people with real families who were relying on these new investigators to not just go to work every day and do their jobs, but to save lives. 

We laughed and admitted that it was a heavy, unfair burden to place on them, but they eagerly accepted the challenge. It was obvious that research advocates had made a lasting impression on the new investigators and they had made a lasting impression on the advocates. These new investigators had a better picture of what real patients are up against and they were enthusiastic to find ways to help.

The only way to a cure is through cancer research. The only way to cancer research is through research advocacy.

-Kimberly Schoolcraft, caregiver and research advocate

Without research advocacy, it’s too easy for research funding to be cut or reprioritized. If research advocates can continue to put a face to the disease and to represent the colorectal cancer community, we can continue to drive research in meaningful ways, have more educated doctors and patients, and continue to move in the direction of a cure.

Leave a Reply

Your email address will not be published. Required fields are marked *