Megan Staebell sought support through CommYOUnity™ Connect in 2016 after her father, Mark, was diagnosed with a glioblastoma. She shared some of her experiences as a caregiver and what it was like to receive peer support.
Tell us a little about the beginning of your brain tumor journey.
“My dad has always been my real life hero. I have been a daddy’s girl since the day I was born. As for our journey, we really did not have any huge signs anything was wrong besides my dad being more tired than normal. He actually went in to his primary doctor for a physical a few weeks prior to his diagnosis and received a clean bill of health.
On February 18, 2016, my mom received a phone call that my dad was being airlifted to our local hospital. He had been out of town on a work trip and had been in a car accident. Our family was totally blindsided to find out he had a golf ball-sized brain tumor. The five days between diagnosis and surgery, in hopes that the swelling would go down, were some of the scariest of my life. My dad underwent a 13-hour surgery which removed 90% of his tumor and that is the day our fight began.”
Why did you seek peer support through CommYOUnity™ Connect?
“When my dad was diagnosed, I felt like my life came to a screeching halt. I knew a glioblastoma is considered a terminal brain cancer and I was searching for hope – hope for understanding, hope for knowledge and hope for affirmation of my feelings and for someone who truly understood what I was going through.
I stumbled upon CommYOUnity™ Connect as I was searching for what we could do next. As much as I love my friends, none of them could actually relate to what was happening until I was matched with Elizabeth – she got it!”
What was it like to connect with your peer mentor? How was it helpful?
“Amazing! She was and is there for me when I need to talk, cry, laugh and live. Elizabeth and I would talk on the phone late at night after our kids were asleep. We quickly became great friends and were shocked how similar our lives were – even our dads’ names are both Mark!
I was blessed with the opportunity to travel to Chicago and meet Elizabeth in person. It was like we had known each other forever! Talking with Elizabeth truly made me a stronger person, it made me realize I was not the only one going through this and, when I think “why me, only me?”, it helped to know I have a good friend who was also on the same journey.”
How has your relationship with your mentor changed over time?
“Elizabeth and I still remain close. We do not talk as much as we did as our lives continue to be busy with our own families, but she is my first call or text on those hard days or on the days I just need a little more support. She is truly a blessing in my life and I know our lives will always be connected because of this crazy journey.”
What is life like today as compared to when you first requested peer support?
“Good. It has been over 2 years since my dad was diagnosed and 1 1/2 years since he passed. The first year was extremely hard without him but I can honestly say I am doing okay. My family was and still is extremely close as I am blessed with amazing parents (my mom here and my dad as my angel), two wonderful younger brothers, an incredible husband and my two beautiful twin daughters.
I now spend my life finding ways to help others and hoping to carry on my dad’s legacy. I am now a mentor myself to two mentees with the American Brain Tumor Association. I mentor a 15-year old who just lost her dad to a glioblastoma and I volunteer at a grief camp for kids. Not a day goes by that I do not miss my dad, but I feel if I can use that energy in a positive way it helps me deal with my own grief.”
Do you have any words of encouragement for others on a similar brain tumor journey?
“Find ways to honor your loved one! I find myself doing things that I know would make my dad proud. Enjoy every moment, take a deep breath and write things down! Elizabeth told me to journal about my dad, so each night I would just write a few sentences of how it went, what we did, was it a good day or bad and silly things that happened. Now, I love looking back through that journal, even though it was the hardest 8 months of my life – it reminds me of all the happy times we spent together.”
The American Brain Tumor Association understands how valuable it is to connect with someone who has had similar experiences. This is especially true for those who have been impacted by a brain tumor diagnosis.
The American Brain Tumor Association launched CommYOUnity™ Connect in 2015. CommYOUnity™ Connect is a free mentor matching service that pairs brain tumor patients, survivors and caregivers with mentors who have been through a similar situation. Connecting with a mentor provides the opportunity to ask personal questions and receive support from someone who is uniquely familiar with the brain tumor experience.
For more information, visit our brain tumor support and resources section.