Posts by Carol Mitchell86

Things are just spiraling downhill over here. My mom had her second surgery back on August 28th, and she didn't finally get discharged from the Mayo Clinic until Friday the 11th. Everything just went sideways during her stay—she had a CSF leak that they eventually managed, but now she’s dealing with a thrombosis in her left leg. Her leg is absolutely swollen, like, massive. The veins have started bursting, so they've moved her onto IV therapy through her legs. Then the coughing started, and she’s back to that vacant, hollow stare. Honestly, seeing that look in her eyes is the hardest part for me mentally. She’s heading to oncology tomorrow to hopefully start Temodar. It's been a struggle; she's been in diapers for a while now and can barely make it to the bathroom without us practically carrying her. Man, it's terrifying how fast this disease just eats someone up. I still can't wrap my head around the fact that she was a perfectly healthy woman just two months ago.
Do you guys think she's already entering the terminal phase?

Lara, take my damn sauce.

My little slice of heaven.

Can anyone tell me if they've actually tried this medication and where I can even track it down?
Thanks.

After the consultation panel over at Stoneville finished their review today, my mom finally got the green light for radiation. She’s heading back home for now while we sort through all the endless paperwork, so she didn't get to stay put like we hoped. Now we’re just stuck playing the waiting game, trying to snag a radiation appointment ASAP, though word on the street is people are waiting up to three months for an opening.
That said, the neurosurgeon who handled her initial surgery is throwing a curveball by suggesting a whole new procedure. She’s saying the MRI scans are pretty murky and thinks what we're looking at might actually be a hematoma rather than a tumor, which would mean suctioning it out instead. I'm wondering if I should push for a fresh MRI before we commit to any more surgery.

Thanks a million for the heads-up, Angela Wright.

Not much has changed on our end, though we did spend some time today with the neurosurgeon who handled my mom's surgery. She’s feeling up for another reduction, and there’s actually a decent chance that what the MRI is flagging as tumor tissue is just swelling—basically a hematoma from the initial procedure. So, I guess there's still a glimmer of hope left in this mess. She’s heading to Stoneville tomorrow for a consultation with the specialists, and once she's back and the surgeon gets their take on things, we'll start figuring out the details for the next surgery.
Mom is doing alright; she can't quite get up on her own yet, but she can shuffle around a bit if we help her, and thankfully, she isn't in much pain.

My mom’s stuck in the hospital dealing with some neurological issues, and honestly, I’m just spinning. She had an MRI on Thursday, and the results show the tumor has already doubled in size since her surgery—and we’re only twenty days out from that. It’s hard to wrap my head around how fast this thing can move, it’s terrifying. The doctors are basically just shrugging their shoulders at us now, telling us there isn't much left to do except try to manage the pain and the headaches. I feel completely lost, like I'm just standing here watching everything fall apart without a clue what to do next.

So, my mom just got confirmed with multifocal glioblastoma. She had surgery on July 15th, and the surgeon says everything went pretty smoothly, which is a small mercy I guess. For now, she’s feeling okay and her vitals are holding steady, so we’re just bracing ourselves for the upcoming radiation and chemo rounds. Honestly, everyone else—even Mom—is handling this way better than my dad is; he’s just completely broken and so lost that even she has to step in and write down his to-do lists for him. I know there aren't any real rules and every situation is its own kind of nightmare, but does anyone have a rough idea of how long this phase usually lasts, you know, while her vitals are still looking good?

Thanks, guys. I’ve been scrolling through this site nonstop, and honestly, it’s such a relief that something like this actually exists. Coming from Canada, we don't really have many places to turn for info—which basically means we're flying blind on what both she and I should even be bracing ourselves for.
The surgery is scheduled for next week; we met with the doctor yesterday, and she told us they won't be able to get the whole thing out because of where it's sitting, so we'll just have to wait until the pathology report comes back to know what we're really dealing with.
Her vitals are steady, and she's acting totally normal—talking, walking, thinking just fine. The only real symptom she had was these killer headaches, but those have cleared up for now. When you look at her, it's hard to wrap your head around the fact that there's something that heavy sitting in her brain.😢

Thanks a ton, Angela Wright. So basically, they don't even give you a final diagnosis until after the PhD analysis is finished.

My mom just had a head CT yesterday. She’s been dealing with these brutal headaches for a few months now, and about two weeks ago, she actually collapsed—we all thought it might have been a stroke. Well, the CT results came back, and they’re suggesting the changes look most likely like a glioblastoma. She’s scheduled for an MRI today. Can anyone tell me if there's any chance this isn't a glioblastoma, or if a CT diagnosis can actually be wrong?😢