Michelle Strubeck found a life-long friendship with Caroline Lenher when their loved ones were impacted by a brain tumor. With this steadfast friendship, Michelle and Caroline turned their circumstances brought on by a brain tumor into charitable energies.
How has a brain tumor diagnosis impacted your life and that of your loved one?
My mom, Irene, was diagnosed with glioblastoma in June 2016. Prior to her diagnosis there were no signs or symptoms of a brain tumor. My mom had a history of vertigo, which is how she found out about her brain tumor. Normally, after a few days her symptoms would clear up, but this time the dizziness kept getting worse.
My parents were vacationing in mom’s favorite place – Glacier National Park – when this happened. My mom was trying to write postcards one night when she noticed her handwriting was off. This prompted her to go the emergency room for an MRI. That was when she received the devastating news. She called my brother and I to share the news, and we immediately flew home to be with her.
Mumsie (my mom’s nickname) asked me to move home to Montana and be her full-time caregiver. I agreed to move back (I was living in Alaska at that time). My brother, Eric, stayed on for several more weeks, before returning to Vermont. He eventually transferred his job to Montana to be nearby and help out on the weekends to give me a break.
When you are a caregiver many people will tell you to take care of yourself. That is easier said than done, but I was fortunate enough to have a large support system. My mom would often tell me, “I’m ok Shell; you go do what you have to do.” Things eventually got to the point where someone had to be with Mumsie while I stepped out, then someone had to be with her 24/7 towards the end. My mom passed away on January 25, 2017 – seven months after her initial diagnosis.
What helped you and your loved one along the brain tumor journey?
Two months before my mom passed away I was doing research for clinical trials when I found the ABTA website. Not only did I find helpful information about clinical trials through ABTA’s Trial Connect Program, but after looking at their website, I discovered their mentorship program, which I signed up for right away. There was a brief application to fill out and a short while later the ABTA put me in touch with my mentor, Caroline Lenher, who lives in Santa Monica, CA.
After our first conversation, Caroline and I knew we had more in common than caring for a parent with GBM. There have been phone calls filled with tears and laughter, love and support and numerous text messages and emails. We have a unique bond and a special friendship that goes beyond the circumstances that brought us together.
Caroline’s dad, George, passed away on April 6, 2019 (he was diagnosed with a GBM stage IV in May 2006). It was my turn to be there for Caroline and her mom, Meg. Caroline told me when she flew home to be with her family she saw a license plate that said “Mumsy” – nearly the same spelling of my mom’s nickname. She said it gave her comfort and a sense of peace knowing she was headed to be with her dad in his final days. She thought it was a sign that angels are watching over us after all.
Why did you get involved with the ABTA?
The ABTA is a wonderful organization and has many resources to support you in your journey. In honor of my mom, I formed Team Irene and I have been participating in the ABTA Breakthrough for Brain Tumors 5K Run and Walk in Chicago for three years. While I live in Alaska now, I used to live in Chicago, so participating in the BT5K Chicago event just made sense to me. I don’t mind making the journey to the Windy City. I grew up in Montana and my mom visited me in Chicago many times. There are lots of happy memories because of those times.
My family and friends join us each year in support of raising awareness of and funds for brain tumor research and programs. We also enjoy making it a vacation, because I also plan a fun trip for everyone, including sightseeing, tickets to shows and endless restaurants to visit. In fact, Caroline has joined us the last two years. She brought her mom, Meg, to the last event to walk in memory of her dad, George. Caroline has also organized her own team, Team George, in the BT5K Los Angeles Run and Walk on Saturday, October 26.
We’ve visited the ABTA offices and met our mentor/mentee “matchmaker,” Vince Rock, program manager at the ABTA. We have told Vince several times that he did a wonderful job pairing us together. Caroline and I don’t have just a mentor/mentee relationship; we have developed a true friendship.
How do you keep motivated in supporting a cause like brain tumor awareness?
Brain tumors are a subject I have become passionate about. I have found that after being a caregiver and going through the ups and downs of caring for your loved one, I feel compelled to do what I can to elevate awareness of brain tumors and the ABTA. It’s rare that you meet someone who has walked in your shoes, so I also find it refreshing and comforting to talk to other caregivers in the brain tumor community and share their experiences.
What would you like others to know about supporting someone impacted by a brain tumor diagnosis?
If you are caring for someone with a brain tumor, I recommend being paired with a mentor through the ABTA CommYounity™ Connect program. It is vital to talk to someone when you are helping your loved one impacted by a brain tumor – it’s an emotional roller coaster. While there are many people out there with cancer, it is rare to meet someone who has brain cancer. You need to talk to someone who has walked in your shoes and can relate to your situation.
What Can You Do?
Learn more about the CommYOUnity Connect program.
Sign up for an ABTA Breakthrough for Brain Tumors 5K Run and Walk event near you.
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