the month of May starts a week from today and with it, a plethora of emotions: ranging from hope to despair, joy to mourning, and a gamut of unidentifiable stuff smushed all in the middle.
it’s the month my daughter, the silly sweet sassy light of my life, turns two.
it’s brain tumor awareness month,
it’s the month my Mema died of glioblastoma.
for some reason, it’s NOT the month with glioblastoma awareness day; that’s in July. as if people weren’t already oblivious to its dangers, they chose a whole-ass different month from brain cancer awareness.
i promised my Mema i’d never use the “f-word” again on Facebook, so i’m physically unable to type it anywhere, especially under my government name. if I had her permission though – boy would i be swearing up a storm. i truly understand now, more than most, why people say ‘f*** cancer.’
we all know it’s bad. we all know it’s painful for both the patients and their loved ones, even if we’ve never experienced either side personally.
glioblastoma is a snowball of terminal cancer and dementia all mixed up, gaining speed, rolling down a hill. then it knocks you on your ass for daring to believe it might spare your loved one.
it won’t, and it didn’t.
my sweet Mema. my precious grandmother.
she left this earth May 15th, 2024, just 14 months post-diagnosis. in that time period, she underwent one craniotomy (on her 81st birthday!) and countless rounds of radiation and chemo. eventually, they told us what we’d been holding our breath for several months prior: the treatment had stopped working.
the only option as far as fighting it was another craniotomy. but the first one almost killed her and she was tired. oh, the exhaustion. she wanted to go home and see her mama, she said. and her husband. her siblings that had passed before her, too. she was ready, what part of her still remained untouched by GBM’s foul tentacles.
may 15th, after three months on hospice: the day she left the body she’d occupied for 82 years, surrounded by loved ones that have felt her absence every second since.
those fourteen months after diagnosis were shiny and bright and tear-filled and horrific. they were heart wrenching and beautiful and tragic. they were full of sweet fleeting moments of happiness and long, drawn out days of misery.
glioblastoma is aggressive. it is cruel. and i can say with my entire being, it’s one heartless son of a bitch.
it’s a death sentence, and nobody understands because so many cancers are treatable, with decent quality of life and extended years of happiness.
so you try your best not to rip their heads off when you get suggestions like healthier eating or, god forbid, snake oil cures. you grit your teeth when you hear things like “god has a plan,” or “i’ll pray for her to go into remission.”
what stings the most are the innocent, well-meaning but all too hurtful questions like “how’s she doing,” “what can we do for you” or the dreaded “but how are YOU?”
the kinds of questions you get, and answer, over and over and over again, the same way each time.
because they don’t understand. they can’t, not really.
brain cancer is not a normal cancer. treatments that send other cancers into remission don’t work on brain tumors because the blood-brain barrier is designed very intelligently and is very good at what it does.
it’s also much rarer than, say, breast cancer. because of its rarity it doesn’t receive as much attention, and don’t even get me started on funding.
SO, FUNDING, now brain cancer (GBM specifically) will receive less funding than the minuscule amounts usually raised (compared to other cancers). the Department of Defense quietly slashed GBM from its annual research funding for FY25 after introducing it just a year prior: a $10 million blip really, hardly even a line item in 2024. gone again in 2025.
that blip could’ve saved lives.
but hey, let’s all raise brain cancer awareness next month and maybe someday it’ll get breast cancer level recognition. by the way, breast cancer is one of the most treatable and well-known cancers.
perhaps, in a far off future, maybe it’ll receive even 10% of the $130 million breast cancer will receive in research program funding this year.
maybe.
sources
2025 CDMRP Funded Research Programs
I too am not a bit tamed—I too am untranslatable 