Today's my five-year braintumorversary. It's weird because this is one of those dates that I don't usually notice a whole lot and one would think that dates like this would be significant.
Five years ago today, right around now in fact, I got the call from Lisa at my PCP's office telling me that I had what she believed to be a meningioma. I remember the conversation clear as day - I was standing at my kitchen island. She started the conversation with "Ok. The first thing I need to tell you is that about 95% of these are benign. If you're going to have a brain tumor, this is the kind to have."
WHO LEADS WITH THAT?
I don't think I fully was able to process what she was saying at the time, because I remember thinking it was Very Much Not a Big Deal.
I just laughed OUT LOUD writing that sentence. Can you imagine that level of denial?
Anyway, I also had to make the very conscious choice to not freak out about it because I wasn't going to get any answers anytime soon. I tried calling around to everywhere in New Hampshire that I could to get in with a neurologist, neuro-oncologist, or neurosurgeon - really anyone who would look at my MRI and tell me next steps.
The earliest I would have been able to get in was November. That's when a friend of mine was like "Ryan. Go to Boston. Do it immediately. This should not wait another six months, I don't care how long it's been in there." I called Dana Farber and they were able to get me an appointment in July, and six weeks was WAY better than five to six months, and the rest is history.
Speaking of brain tumors...
Dana Farber has these patient workshops. I went to one for Lynch Syndrome a few weeks ago, and the one for brain tumors was this past weekend. I learned a lot, but there was one thing that I walked away with that I don't think I would have absorbed through any other method of learning.
Fucking hell, am I lucky. Every once in a while, I am able to get a glimpse of the size of the bullet I dodged. This was one of those times.
There was a woman who was maybe in her late 20s who will never be able to walk again because her brain tumor took that away from her.
There was a man in his 30s who will never have the use of the entire right side of his body ever again.
There were other patients there who were actively living on borrowed time. One had literally come to this workshop with their spouse and their hospice worker.
There was a spouse of a patient there who I helped with her knitting. She and her husband went for full body scans at age 50 and they found a grade 3 glioma in his scan. He's just about to finish chemo and she was knitting him a hat, her first, for him to celebrate the end of his treatment. She'd dropped a stitch and couldn't find it. I found it, helped her fix it, and she cried because she was so thankful. Except it wasn't just thankful tears - it was also "I'm standing on the very edge of my sanity and one barrier is going to push me entirely over so please help me with this even though it seems small" kinds of tears.
Usually the Universe is less direct in its messaging about this. There are times where I feel ungrateful, or frustrated, or just angry...at what? Who knows. I'm just mad. There are times I feel overwhelmed by everything and there are definitely times of self-pity.
Are those gone? No. I firmly believe they serve a purpose, actually, and I believe that the best way out of those times is through. It is a hill I will die on, in fact. I'm totally ok with that, because a hill I will equally die on is that my life and my ability to live relies as much on my gratitude, if not more, than the difficult times, so I have to move through those with equal thought and intention.
Anyway, happy Marvinversary. Hope you're rotting in a landfill somewhere, Marvin. Or maybe you're still being picked apart in a research lab, piece by piece. Either way, you're not eating my skull or any parts of my brain anymore, so I consider that a win.
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