fadedsurfer58 said:Hey there, everyone hanging out in this thread!
It’s the same old story, isn't it? You go through life thinking the train wrecks only happen to other people, until reality decides to step up and slap you right in the face.
My husband's mother was rushed to the Mayo Clinic last week because she started dealing with these massive headaches, sudden disorientation, and total short-term memory loss. After they ran some tests and a CT scan, they diagnosed her with a brain tumor. To make matters even more frustrating, there was some medical conference going on at the same time, plus it was a holiday weekend, so everything slowed down. We ended up stuck waiting five whole days just to get the MRI results back.
The neurologist on duty, Professor Basich Kes, was actually really kind to us. While we were still waiting on the MRI results, she sat down with us and walked through the CT scans. She tried to keep us optimistic, pointing out that there’s no sign of edema around the tumor, and it doesn't look like it's deep-seated—it seems to be positioned more toward the frontal lobe. She mentioned she’s seen much worse cases, though obviously, we won't know the full story until the MRI comes back.
We were all basically patting each other on the back, clinging to this desperate sense of hope, trying to keep each other's spirits up—until that MRI came back. It was a total gut punch. We just sat there in complete shock. Even the neurosurgeon looked at us like we were crazy, wondering how on earth we hadn't noticed anything sooner.
My husband's mother is honestly such a light—she’s this incredibly vibrant, bubbly, and spirited woman. She’s a total firecracker, too. She works as a scientist in a high-pressure field, yet she almost never complained about headaches; if she did, they were nothing more than minor, trivial things. Her vision was perfect, her mood stayed steady, and she never dealt with memory lapses... there was absolutely nothing to suggest that anything was actually going wrong inside her body.
The tumor is massive, spreading across both hemispheres of the brain, and positioned way too centrally. We’re looking at a suspected glioblastoma right now, but we won't have any real certainty until Tuesday after the biopsy results come back.
It’s the same old story: when someone you care about is stuck in a crisis like this, suddenly you feel like you have to go to war for them. You find yourself ready to shake the entire world just to get some answers. You start calling every contact you have, hunting down friends, or pulling every string possible to get a foot in the door at a hospital. It’s driven by that crushing sense of helplessness—that feeling that if you aren't fighting, you aren't doing enough.
It feels like we’re stuck between a rock and a hard place here, completely hamstrung.
I’m turning to all of you because I could really use some advice.
I’d love to get some more input here—does anyone have a solid recommendation for a neurosurgeon? I was at the Mayo Clinic, and they told me that Dr. Paladino isn't even practicing anymore. Apparently, he's completely stopped taking patients, and getting an appointment with him is basically impossible now. (Wait, what? That's news to me. Even though I'm not exactly a medical pro, you still pick up names and follow certain specialists, so this caught me totally off guard.)
I’m heading in to see my neurologist, Dr. Demarin, this Monday to get her take on things and see if she has any neurosurgeons she’d recommend. Honestly, though, it feels like everyone is singing from the same songbook when it comes to the prognosis.
I’m also thinking about heading over to the Cleveland Clinic to go over my results. I honestly don't know what I'm trying to achieve here, but sitting around and just surrendering to the situation feels impossible. I’ve been reading up on those experimental procedures involving radioactive iodine targeting the core of a tumor, but I have no clue where to turn or who to talk to if I want to actually get some real information on it.
I honestly don't know what to do anymore; we’re completely lost. My wife has been at the Mayo Clinic for a week now, and she’s actually cheerful and in great spirits. She has absolutely no clue about her condition or how long she’s even been hospitalized. It sounds twisted to say, but in a way, it’s a blessing. Even though her short-term memory is gone—she’ll forget we were just out for a walk thirty minutes ago—she’s still herself. That same bubbly, energetic spirit is still right there.
They’ve got her on Mannitol and Versed—one to pull the fluid out of her cells and the other just to keep her asleep. She isn't even complaining about headaches...
Sorry if this is getting a bit long-winded, but I think you guys get where I'm coming from. It’s gut-wrenching to sit here knowing there isn't a single thing we can actually do. It honestly hurts to think about what would be more humane for that woman—to just bring her home, look after her, and then spend the rest of the time helplessly waiting for the inevitable.
Should you just bite the bullet and go with the radiation option, knowing it’s going to be a grueling two or three months of pure misery? 😢
I’m not about to just roll over and take this lying down, and I sure as hell refuse to sit around twiddling my thumbs waiting for some miracle to happen on its own. I want to fight back. If that means trying experimental drugs or going after every single option on the table—whatever it takes—then that's exactly what I'm going to do. You know how it is. 😢
Thanks. If anyone has any advice, I’m all ears. Good luck to everyone out there fighting their own battles. 🙂
This is the first I’ve heard about Dr. Paladino being out of the picture. He was still seeing patients just this past summer. Regardless, Dr. Heinrich and Mrak are more than capable replacements. Based on my own experience, I wouldn't hesitate for a single second about where to go if heaven forbid something like that happened to me or someone I know again—it's the Mayo Clinic.
My advice? Get yourself over to the Mayo Clinic first. Don't start making any grand plans until you've actually sat down with them and seen exactly what kind of mess you're dealing with.
I know how heavy this feels, but honestly, everything that’s unfolding right now was bound to happen. Don't you dare give up on her treatment. Even if—God forbid—this turns out to be the worst-case scenario like a glioblastoma, the actual regimen isn't even the hardest part; dealing with radiation and Temodar is often much more manageable than some of the brutal chemo protocols used for other diagnoses. It’s about buying her more quality time. Besides, you can never truly rule anything out—who knows, there might be a breakthrough drug or a more effective treatment hitting the market just when it's needed most.
Just take it one day at a time. Deal with things as they come and don't let her get bogged down by the diagnosis. If she can perceive what's happening through her own senses, that's enough. Your description of her really hit home for me—it reminded me so much of my mother, who was just as spunky and full of life, completely oblivious to her own condition. Maybe it’s actually better that way, regardless of everything else.
Hang in there.