So you’ve been diagnosed with a brain tumor? Gah! I’m really sorry. From the bottom of my heart. I get it. I have one too.
I feel like I get asked the same questions ALL THE TIME. From people who were recently diagnosed, from their loved ones, and from people who are (understandably) curious.
I also feel like I am frequently negotiating with strangers online, well meaning individuals who spew their brain tumor anecdotes as facts. When Beau Biden was diagnosed with a tumor, every person who had a great-aunt-who-died-from-a-brain-tumor became an authority.
They are, in a way. They can speak about their great aunt’s brain tumor and their family's experience and relay that to the masses. But brain tumors are as diverse as the people with them.
I am not an expert, but I am stunned by the amount of misinformation out there. As well as the lack of actual information out there. No wonder schlubs like me become de facto sources.
My fingers are tired of hammering out the same rebuttals, giving the same advice, and conducting countless internet searches.
Over the years, I have collected information, had dozens of MRIs, met a lot of doctors, and heard stories. I have made friends and lost friends.
I’m creating this space to tell you all about my experiences with my brain tumor and to share some of the things I have learned.
Yes, Arnold, it is a tumor.
This website is a work in progress (just like me). Please be kind and patient.
Here it goes.
who am i?
My name is Morgan. My story is all over this site. If you continue reading, you will get to know more about me than you wanted to know.
This is a picture of me and my dingdangdog from January 2021.
Photo taken by my sister, doodled on by yours truly.
Living with a brain tumor is terrifying and exhausting. I am so much more than my tumor, but I can't forget about it for more than a few blissful hours at a time.
When I was diagnosed, my first thoughts were about surviving, but then I had to go back to work six months post surgery. Life was surreal. I was 28 years old, I did not want a brain tumor at all. I also didn't want it to eclipse my identity.
I would live and work as best I could doing the things I loved. I would not use the little energy I had on fundraising for brain tumor research. I would spend evenings with friends, not support groups.
Last year, a supercool acquaintance of mine was diagnosed with a brain tumor. He and his wife came over for dinner at my parents' house so we could visit, maybe help manage expectations, and explain some things in plain language. My family and I had learned a lot in the previous eight years.
I remember how lost we (my family, friends, coworkers, and I) felt after my own brain tumor diagnosis and surgery. I was wheeled to the car with no follow up appointments scheduled, no official diagnosis, and no idea what to do next.
May that never happen to another soul.
I am creating this website as a place to dump my story and some advice. I still don't want to use my free time to do brain tumor stuff, but I have come to realize that I do anyway. My tumor is relentless, I haul it around with me everywhere I go.
I hope that dingdangbrain becomes a space where you can share your stories or advice about brain tumors, whether you are a patient, relative, doctor, nurse, friend, or caregiver.
We all tell our stories differently. I would love to see video, hear your voices, see your art, read your poetry, listen to your music.
Send recommendations for albums, books, websites, recipes! What keeps you happy?
If you don't want to contribute, read, lurk, enjoy. It took me eight years to get here.