When Jason recently asked me if I wanted to write an article for Brainstorm Health, I immediately said yes. And then he said no topic was off limits. I could write about whatever I thought needs to be said about the GBM journey. WHOA. As a long term survivor of 3 years, that’s a lot. Shortly after I drove through a house and was diagnosed in July 2023, I started documenting my story so others could follow along. First, it was meant for family and friends. Then it became for survivors too. I never want anyone to do this journey alone. I currently mentor people in a handful of states across the country. I’ve never turned anyone down. Some of my mentees are through official organizations (ABTA and Imerman Angels). Some are through my in person support group where I live. Some are through friends of friends.
Because I am a long term survivor, I have made some deep connections with my fellow survivors.
And for whatever reason, I am currently in a season of death. There, I said it. I feel surrounded by death.
As someone living with GBM, death is never an abstract concept. From the day we’re diagnosed, we’re fighting for our lives. Death isn’t somewhere off in the distance. It’s always there, walking beside us, waiting, sometimes feeling like it’s running straight toward us.
I still remember the first GBM funeral I attended. Dennis was in my Gray Matters support group. We had taken a survivor picture together at a Head for the Cure race a few months prior to his passing. He was a firefighter so these two HUGE fire engines showed up to the church with these gorgeous US flags. I have never seen so many men in uniform at a church in my life. I grabbed a bunch of Kleenex, sat in the back of the church, and bawled. For Dennis. For me. For everyone with GBM.
Then there was Kurt, also in my Gray Matters group. I loved Kurt as soon as I met him. He was one of my ‘twins’… Meaning we were diagnosed at the same time. We would sit at the back at the meetings and giggle like naughty school children. Kurt’s tumor kept coming back so he finally said ENOUGH and chilled at home with his amazing and beautiful wife, Silvia. I visited them shortly before Kurt passed. Now Silvia is a close friend of mine. We love keeping his memory alive.
Jim was another ‘twin’ of mine and member of Gray Matters. He had an inoperable tumor and kept that thing at bay for 3 years!!! He recently passed in June and I visited him while in rehab (on Mother’s Day of all days). His amazing wife, Debbie has now become a friend of mine and we are about to celebrate Jim’s life in mid July.
And then there’s my precious friend, Fonny. I met her through a friend of a friend when she was diagnosed a couple of years ago. This woman lights up a room. She is a beloved daughter of the King and isn’t afraid to tell you about it. Anytime she is in the hospital, she uses it as a place to share the beautiful news of her Savior.
She’s now in hospice and my heart is crushed. Logically, I know this is the progression of this horrible cancer. Spiritually, I am praying for no pain, an easy transition, and peace and comfort for her family. But my heart is crushed. I simply can’t imagine fighting GBM without this beautiful friend beside me.
I recently visited her. We held hands. Talked softly so no one could hear. I challenged her to a beauty contest. She laughed. I told her she was our neuro surgeon’s favorite (yes, we have the same one and Fonny probably IS her favorite). She laughed. I joked that I couldn’t believe she was going to party with Jesus without me. She told me to keep fighting. I told her I would. I told her that she needed to show me all the cool spots in heaven when I got there.
This is the dark part of being a long term survivor. Grief is multi-faceted. You have your own of course. But you also have the grief you feel for these relationships you foster along the way. And the grief really starts to stack up on you when these beautiful souls pass away.
One of the first things I did when I got diagnosed is get myself a grief counselor. How often I see her depends on what is going on with my treatment (and my heart). But it’s definitely one of the best things I’ve done for myself. I need to be able to say the deep, dark things to someone who isn’t a caregiver or friend.
I’ve written a lot about my GBM journey over the past three years. I’ve written about surgeries, treatments, clinical trials, MRIs, setbacks, victories, and hope. But I haven’t written about this part before… the grief that comes with outliving the friends you’ve come to love.
So thank you, Jason, for giving me the opportunity to share. If you’re interested in following my journey, give me a follow. I promise, I’m normally pretty light hearted!
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