If you have or are supporting a friend or family member who has been diagnosed with cancer, you know that role comes with many challenges. It’s hard to watch the ones we love suffer and struggle. There is a learning curve – from screening to diagnosis to treatment and to long-term survivorship, or to end of life. These experiences are unique to every patient as well as every caregiver.
Every caregiver needs to figure out how to balance their time, energy and learn how to give in ways your loved one most needs and can accept. At Rein in Sarcoma, we’re taking a look at the realities faced by caregivers and the patients they love to enhance our resources and support services.
I recently sat down with Alan Christensen. Alan became familiar with Rein in Sarcoma when his wife Sara was going through an Angiosarcoma diagnosis, treatment and – sadly – death. Both Sara and Alan began volunteering with RIS in early 2019 until Sara’s passing on July 24, 2019.
I asked Alan how he handled the initial stages of the diagnosis. Alan replied, “I was very naïve to the whole cancer world when Sara was initially diagnosed. I felt my learning curve and the experiences we went through compacted 40-50 years into a 13-month time span. I learned at a pace that I had never experienced before.”
As caregivers, it is often very difficult to cope with your own emotions while focused on the person you are caring for. I asked Alan what he did to help himself during this time. Alan shared that routines were very important to him around Sara’s care and his personal time. He found he became more adept at living in the moment while being a caregiver. He also found it challenging to discover his own voice as a caregiver as time went on, to not become the “doormat” for every emotion he and Sara were going through.
Alan learned a very important lesson: to not give beyond his ability, and not have to answer everyone else’s questions as he continued to be a caregiver during his grieving process. Alan learned to not continually feel the need to share everything with everyone. This helped him keep from becoming overwhelmed or exhausted answering all the questions and repeating information and stories that, to him, were personal and could be very upsetting.
I asked Alan what advice he would give to a new caregiver. Alan said, “Show up and listen. Those who go through their cancer journey often just need someone there. Also, there can be a monotony to cancer treatment life, so you need to carve out time for yourself to just have some fun.”
While Sara was in treatment Alan found Jack’s Caregivers Coalition, a men’s organization that connects male caregivers for mentorship and for events to bring caregivers together to talk, share and have some fun. Growing up, Alan had mostly female friends so a group of men as mentors and friends was fairly new to him. This group helped Alan connect to himself as a caregiver and to give a deeper level of care for Sara. Sara encouraged Alan to go to events even when she was not doing well – she knew how important it was for Alan to take care of himself too. Alan is still involved with Jack’s as a mentor. Alan knows the importance of not going through the caregiver experience alone. He remains friends with the wonderful group of guys he met – as fellow caregivers they share a deeper connection that endures.
Rein in Sarcoma (RIS) Resources and Support for Patients, Families and Caregivers
RIS is a major form of support and inspiration for a very lonely disease. We provide information to sarcoma patients, families, caregivers and survivors. RIS does this through:
- “Peer to Peer” patient support and mentorship
- Free Sarcoma Patient Starter Notebooks
- Monthly coffee meetups for sarcoma patients and their caregivers
- Rein in Sarcoma Circle of Support Facebook page
- Rein in Sarcoma gatherings throughout the year include our annual summer celebration Party in the Park, our Winter Gathering for patients, families and caregivers, and our fall Rein in Sarcoma Remembers event
More information available here
Mark your calendars for the sixth annual Rein in Sarcoma Fall Fundraiser. We will be returning to the elegant Metropolian Ballroom in Golden Valley, Minnesota – take a look at highlights from our 2019 Fall Fundraiser.
The things you do for yourself are gone when you are gone,
but the things you do for others remain as your legacy.
-Kalu Ndukwe Kalu
They called him “The Legend.”
His name was Chuck Novotny, and he lived up to his nickname.
For over 30 years, Chuck nurtured students and athletes of all ages as a 6th grade teacher, guidance counselor, and coach to more kids than you can count. Those kids, now adults, tell stories of how he changed their life’s trajectory and shaped them as young adults. Some credit Chuck with helping them stay in school or leave gangs, apply to colleges, or play collegiate sports.
Chuck retired a few years ago and spent most of his time on the road, driving any distance necessary to watch his sons play music and competitive soccer. His middle son, Nick Novotny (27) of Rochester, MN is the musician. Nick says that despite living five hours away, his dad was often in the front row at his performances. “My dad always supported my passions,” Nick says. After shows Chuck would chat with the musicians and buy the band’s CDs to give to his friends and neighbors.
Nick describes his dad as a generous person who would drop everything to help someone—like the time Nick damaged his car in a fender bender and Chuck immediately drove from Illinois to help find a replacement vehicle. “Time and distance didn’t matter,” Nick says. “He would do anything at the drop of a hat for anyone. He would be there for them.”
One day in 2018, Chuck called to tell Nick about the sarcoma cancer diagnosis. He visited the doctor due to a hernia and an x-ray revealed something suspicious on his lungs. It was angiosarcoma. Chuck underwent treatment for nearly five months but passed away in January 2019 at age 59.
Nick recalls one of his visits with his dad in Rochester. They enjoyed a beer at the Little Thistle Brewing Co. before the newly constructed space was opened to the public. Nick is now an Assistant Brewer at Little Thistle Brewing. When he learned of the company’s plan to create a coffee lager—one of Chuck’s favorite types of beer—he suggested they name it after his dad: The Legend.
Chuck’s oldest son, Corey, designed the artwork for The Legend’s beer can: a great horned owl in the colors of blue and gold. The owl is an important symbol in the family, and the colors represent Chuck’s high school where he taught and coached (Leyden High School, Franklin Park, IL). Chuck passed away before he could try the namesake beer, as it was released only a few months ago. But Nick knows he would have loved it.
It’s been said that one’s legacy can be measured by their impact on others. Chuck’s legacy lives on with his family, friends, and the countless students and athletes whose lives he touched.