Tag: glioblastoma

  • Grateful

    I’m grateful for these things that are but just a drop in the sea of the love I shared with my grandmother.

    Two years ago yesterday, she left this world. Two days before her death, she briefly woke up. Most of her mind was gone at that point; when she tried to speak it came out garbled and panicked. But that morning she spoke clear as day.

    “Hey baby,” she said with a smile, or as much of one as she could muster.

    She was talking to my daughter, who had just turned one and was in my arms at the foot of the bed. Mema looked up at me, looked through me, and then she was asleep again. She never spoke another word. She never woke up again.

    I’m grateful that we could give her that small moment and I’m grateful that she loved my daughter so much it allowed her a very brief reprieve from the hell the cancer wreaked on her brain and body.

    I’m grateful for a couple months before that, when she could still speak but got confused very easily and was forgetting a lot.

    I sat on her couch across from her in her chair, my mother between us. My mom tried to keep my grandmother’s brain occupied so she pointed at me and asked “who’s that? What’s her name?”

    My grandma looked over me for what seemed like a year. Finally she replied “well, I don’t know, but I know she’s my granddaughter and I love her very much.”

    Grateful for a month prior where I was once again on her couch. I spent as much time as I possibly could with her during her illness. She didn’t speak much to me anymore, or anyone really. I imagine she didn’t know what to say but I have no idea what it must have been like to have your brain being destroyed from the inside out.

    That day, she looked over at me and her eyes were clear.

    “Kirsten?”

    I sat straight up. She hadn’t called me by my name in months and she certainly hadn’t sounded so much like herself as she did then.

    “Yes ma’am?” I asked. She replied “are you okay, honey? You don’t look like you feel well.”

    I didn’t feel well, and nobody else had noticed. She did. She always saw what I could easily hide from others.

    I’m grateful for that fleeting moment of clarity so we could share a shred of normalcy for even a second.

    For our sleepovers at her house after my grandfather died. They became a regular thing even once the grief of his death had become, well, not easier, but perhaps softened a bit, and we continued them until her diagnosis.

    We’d sit in her living room eating homemade chili out of mason jars with long spoons, watching Judge Judy and questioning the reasoning skills of some of the guests. Or Jeopardy, where I’d shout mostly wrong answers to questions that she almost always got right.

    Occasionally on these nights, we’d get on the subject of politics. We eventually came to an agreement that the only politics we would discuss would be why she and I would be the best choices to run the country. It never came to fruition only because we couldn’t seem to agree on who would be president.

    That she loved me and supported me through my addiction without enabling me. One night I snuck a bottle of vodka in with me, and started drinking in my room at her house after she went to bed. The next morning, still drunk, I realized I’d hidden the alcohol and couldn’t find it.

    Of course she was the one to make that discovery and she ordered me to come talk to her right then.

    “I found this, I dumped it out, and it will not come into my house again. If you do, you will have to leave.”

    She wasn’t at all angry with me, but she absolutely meant it. She hated anyone having alcohol in the house. My relatives had to keep their booze in the shop out back whenever they visited.

    For that summer evening 13 years ago when we sat on her front porch swing, just barely pushing off the ground with our feet. She was on the phone so I snapped a photo of us. She was displeased, but I thought she always looked beautiful. After she hung up I turned to her and said I needed to ask her for something.

    The something was approximately twelve grand so I could go to grad school two months later. My caveat was that she had to let me pay her back, because she was often so generous that people would take advantage, and I didn’t want to do that.

    She said “oh sure, of course you can,” and two years later at my graduation she said “don’t worry about it,” and refused to take even a dime from me for the tuition. Without her I wouldn’t have an MBA.

    I’m grateful to have gotten sober two years before she died. She wanted so badly for me to stop drinking and start building a life that made me happy. I got to spend her last two years with her sober, and although the last year was the most excruciating and heartbreaking, I was sober. I was present. I was there for her.

    She was always there for me.

  • Brain Cancer? More Like Lame Cancer

    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

    2024 CDMRP Funded Research Programs

    Glioblastoma Research Organization Article + Sources

  • I spend a lot of time crying in your closet.

    Is this even therapeutic? I put my thoughts down on paper but they’re still in my head.
    I unplugged the hearing aids a few weeks ago. Today I plugged them back in, because it made me feel better.
    Everything is just as it was but nothing is the same.
    I can see each of these sweaters on and they all look beautiful. I can’t look at the hat with the polka dots without wanting to cry; main hat in rotation for chemo and associated with the beginning of the end in my mind.

    The cream colored one in the middle was purchased in North Carolina over Christmas in December 2022, a surprise while us younger girls were out shopping. I don’t think it was worn again after the diagnosis in March 2023.