In 2011 I was living in Virginia and my wife Sarah was diagnosed with colon cancer.
In 2013 we moved from Norfolk, Virginia to Eagan, Minnesota. Our boys Merrick and Lachlan were 6 and 3, and Sarah had stage 4 colon cancer. One of our first engagements with the local community was the Colon Cancer Coalition’s Get Your Rear In Gear - Twin Cities Race in 2014. We knew very few people in the Twin Cities and were excited to start making connections. Sarah had been asking to move to the Twin Cities since 2007, but I wasn't having it. I finally caved in when her cancer diagnosis went from stage 3 to stage 4. I never told her I thought she was going to die, but in my head we were moving to Minnesota so she could die living where she wanted to live. In my head I'd be looking for a new place to move our family within 2 years. I didn't have those conversations with anyone else. There was no Jack's Caregiver Coalition.
But 10 years later, this native Texan is as Minnesotan as they come with no interest in moving anywhere else. A whole lot has happened in those 10 years, here’s just a few of the highlights:
Sarah went to work for for the Colon Cancer Coalition. I left my career in construction and went to work for Jack's Caregiver Coalition. My marriage to Sarah ended. Sarah’s relentless advocacy helped Jack’s receive funding from the Colon Cancer Coalition. Every year since the Colon Cancer Coalition has supported local colon cancer caregivers through their financial support of Jack's Caregiver Coalition. Sarah went into hospice and poured out her heart into notes to our boys for months. Notes they'll be getting for years to come. Sarah's suffering ended in 2020. She donated her body to research, and with the research on her body complete she now rests in an ornate box on my youngest son’s nightstand. Sarah's boyfriend Doug Dallmann, her caregiver till the end, became a bonus dad to our boys. I married a gorgeous Minnesotan named Alison and gained 3 beautiful bonus kids in the process.
Most recently in 2023 the MCCRF (Minnesota Colorectal Cancer Research Foundation) with support from the Colon Cancer Coalition, announced at their annual gala they had named a grant after Sarah. The “Sarah DeBord Memorial Grant”. Which would fund research aimed at “Characterizing the Time Toxicity of Cancer Care Among People Living with Colorectal Cancer”.
Prior to that evening I had never heard the term, “Time Toxicity”. The idea that cancer is financially toxic has been around for a while, but this notion was new, and it resonated deeply with me. Wasted time is invisible, I thought to myself, and here is an opportunity to shine a light on it. Every caregiver on earth will tell you that time is something they know nothing about having.
When I had the opportunity to meet the lead researcher Arjun Gupta, I told him I wanted to support his team’s work. He told me they were very interested in the caregiver’s perspective and gave me the opportunity to be interviewed as part of the research project.
My takeaway from that experience was that much like we now have calorie counts on menus at restaurants, there will someday be a way for people facing cancer to understand the different time expense factor for each different treatment. It’s WAY more complicated than that, but that’s how I think about it. Currently no one I know is even asking that question. One day, armed with this information, families facing cancer will be able to make much better decisions.
This week I reached back out to out to Arjun wondering what we could share with our readers if they also wanted to support the research. Here's his response.
Thank you for thinking of our work. We are almost done with the interviews but have and will have several projects about the time burdens of cancer care and caregiver burdens. For example, an upcoming project will look to determine caregiver perspectives on thresholds important to them. If a new cancer drug makes someone live 30 days more (4 months instead of 3 months), how many days spent coming back and forth to infusion make the 30 days of extra survival worth it? Of course, these are personal choices, and that’s ok. We just want to understand patterns and perspectives. All of these projects should take 30-60 minutes of people’s time. Anyone wanting and willing to help can please email me, ok to share my email. If they can provide one-two lines on their experience, that would be lovely.
When I think about all that the Colon Cancer Coalition has done and is doing for colon cancer caregivers, it isn’t just the financial support they give Jack's every year. Funding research on time toxicity has the potential to give caregivers more margin in their lives. Margin they desperately need. Margin to care for themselves. Margin to provide for their families financially. Margin to realize all of their potential as humans.
I hope you can see why Jack's is showing up for the Get Your Rear In Gear Twin Cities race on Sunday, August 20 at 7:00 am at Southdale Center in Edina. And I hope I'll see you there too!
By: Kyle Woody
Kyle is notorious for giving up on stuff. His kindle is riddled with half read books and his Netflix que brimming with half watched shows. In 2018 he also called it quits on an 18-year career in construction. But he’ll never give up on Jack’s Caregiver Coalition. One of the three proud founders of the coalition, he has served as executive director since day one. You’ll often find him swearing at his laptop or feeling outnumbered by all the ladies in his exercise classes. He is blessed daily by his beautiful bride, their five children, and their male dog Janet.