Posts by brightgardener8

Amy Hayes28 said:Man, he’s become such a pain in the neck...*
Poor old lady dealing with him😢
Now that his blood work is a complete disaster, I try to get him to be straight with me—how much Ceylon juice has he actually had? How much Propolis, Noni, or Beta-glucans?
Of course, he claims he hasn't taken anything. He lies about taking them, but honestly, if his doctor told him it was helping, he'd probably believe it in a heartbeat.🙄
He's starting to realize I was right all along, but what's the point now?
And trying to corner the doctor? Forget it. You'd have better luck finding a needle in a haystack.😁

It sounds like we're fighting the exact same battle!
My mom's chemo has been pushed back twice because her blood counts were trashed. She's drinking Propolis, Beta-glucan, Taheebo tea... Once, things seemed to improve, and we thought it was thanks to the Beta-glucan, but the second time, nothing happened.
So, we started giving her this blend of shredded beet, apple, carrot, and horseradish. As for juices? Don't even get me started. She won't touch them, claiming they're "too sweet" and bad for her blood sugar. Can you believe that? Meanwhile, if you put a massive plate of cookies on the table, she'd polish them off in seconds!! Not to mention the greasy pastries, bacon, and all that other stuff.
Anyway, her blood work finally looked good enough one day that we got the green light for the next chemo cycle. We start tomorrow.
And her blood sugar was at 30 on New Year's Day! Who knows what she was sneaking into her mouth before we stepped in to monitor her...
Honestly, she doesn't notice a thing, which is almost a blessing. She's already making plans for ten years from now... while those of us close to her are already going out of our minds.

casualpanther1 said:Hey everyone,
...I can tell you right now, I'm not scared—actually, it's the exact opposite. I want this thing done as soon as possible so I can be in peak shape by the time my wife needs me to be much more than she does right now. Look, there’s always a risk when you’re talking about brain surgery, obviously, but I truly believe I won't end up with any negative side effects. And honestly? If there are going to be consequences anyway, I'd rather deal with the fallout from the procedure than live with the state I'm in without it.

I'm really sorry things are heading this way.
Hang in there and check back in whenever you can. Good luck!!!

Well, I'm checking in too!
Not much has changed on our end. Mom is still doing things her own way. Even though she’s completely lost track of time—forgetting what day it is, whether it's a holiday or just a random Wednesday or Sunday... she actually went to a New Year's concert at the Lisinski last night. It was a huge wish of hers, so we had to make 😁
happen. If her blood work looks okay, she’ll be continuing chemotherapy this week.
Big hello to everyone, and I'm wishing you all a much happier New Year!

Honestly, even as a bit of a pessimist, I didn't think our officials would actually pull this off so quickly... Pretty impressive, I guess.👍

Melissa Kim45 said:🙂

Is it a comfort? I mean, maybe not really, but kind of. There are moments when I feel like I’m losing my absolute mind and I can't talk to anyone because people just get bored. They don't realize it, they don't care, or they just find it exhausting.
Honestly, I have no idea how anyone manages to tolerate being around me.🙏 🙏

My cycle is completely messed up. My doctor says it's from the stress.

I'm trying not to whine. I really am, but sometimes I just turn into such a total crybaby.

Thanks, girls. 🙂

Look, at least you don't have to feel awkward dumping everything that's eating you alive right here. We all get it. I vent to my sister, she vents to me... it's just this endless loop day after day. When I hang out with friends, I rarely bring up Mom; I might mention it in passing, but that's about it. I don't expect them to actually get what I'm going through (unless they've dealt with something similar), and honestly, it helps me to focus on something else for a bit.
Right now, every single time I see my mom, it’s like an absolute test of my sanity.
She’s been diabetic for 20 years now; even the insulin shots she takes aren't helping her levels, yet she just stuffs herself with whatever food she can get her hands on. She is obsessed with food. Lunch isn't even over and she's already obsessing over dinner. She literally steals food in her own house. And don't even get me started on sweets... Can you imagine how hard it's going to be to control what she eats during the holidays? It's a nightmare. I try to explain things to her, but what's the point? She doesn't understand anything anyway. Her blood sugar hits 20 even with insulin therapy, and she just shrugs and says, "It's not that high." Then she gets up in the middle of the night to make grits (she doesn't even know how to cook anymore, so she just hides the evidence in the oven).
I don't even know how to keep myself in check. I want to be good, I want to stay calm and not show my frustration in front of her, but damn, it's so incredibly hard. I'm not a robot.

Angela Wright said:We're still waiting. We actually pulled a few strings to see if we could speed things up, so let's see what happens next week. Normally, the standard procedure takes about 30 days.

Look, if the law says 30 days, then in our lovely American bureaucracy, you can bet it'll be double that. And when you factor in Christmas, New Year's Day, and Three Kings... (aka: everyone's out skiing), the only way this actually sticks to 30 days is if someone pulls some serious favors. Fingers crossed we get some movement soon!

Nathan Bailey said:Hey everyone!

Has anyone actually been to Mayo Clinic since they did that whole "restructuring" over at oncology? We need to get in for a follow-up, but we haven't even been told which doctor we're seeing because when we booked the appointment, they didn't mention a thing. Does anyone know who handles brain tumors now? And is this new department split set in stone, or are they still listening to patient complaints about it? Thanks.

My mama is still seeing the same doctor. Nobody has mentioned any changes to us, but then again, she hasn't finished her treatment cycle yet, so maybe that's why.

Hang in there, Dina! We might only be able to offer support from behind a screen, but I really hope it helps even just a little bit🙂

fajterica, Angela Wright, how did the non-profit registration turn out?

I figured I’d chime in and give an update on our situation here. Mom just wrapped up her fourth round of chemo, and sure enough, things always seem to take a dip around this stage. That’s exactly what we’re dealing with right now. She actually handled the chemo itself like a champ, mostly thanks to Zofran 👍 (seriously, thank you guys again for all the tips regarding Zofran).
But man, she is completely out of it. She can't grasp even the simplest things, and honestly, it’s slowly driving us all insane. It feels like we're just tilting at windmills—we try to explain things to her, but it’s useless. Sometimes I feel like I should beat myself up for getting frustrated, because I know she physically CANNOT process it, but sometimes those feelings just hit harder than logic. And then I lose my cool... Then I calm down and the whole cycle starts all over again.

Linda Campbell said:First off, I am so incredibly happy to hear about your mom—truly, from the bottom of my heart. Second, I just wanted to say thanks for your posts. No matter what’s going on, they always manage to make me laugh. Honestly, props to you for keeping your sense of humor through all this crap you're dealing with. Seriously, mad respect. Hang in there, wishing you nothing but the best.

I’m right there with Linda Campbell on this one! Melissa Kim45, I was thinking about you again this weekend because we had this whole hilarious episode involving my mom and a cake. I won't go into the gritty details because I don't want to sound like I'm making fun of my poor, sick mom. But hey, maybe I'll write it all down sometime...😁

Hey, and welcome to all the new faces on the forum. Please, vent about whatever is eating at you; I guarantee you'll feel at least a little bit better once it's out there. And that counts for something.

Megan Lewis said:Are you in NYC? If so, head over to a pharmacy on Broadway—there's one called Paladino, or just give them a call. They sell Zofran by the pill; I think they have the 25mg and 50mg doses. The weaker ones were $20/pill, and the stronger ones used to be $33/pill (don't quote me on that, though, it's been almost two years since I bought them for my dad). But you'll need to get an oncologist to write you a prescription—not the temporary kind, but a long-term one or whatever the hell it's called. Anyway, Zofran is killer for nausea, but you have to take it before chemo or radiation. If I remember right, you take one before radiation and the second one 24 hours later. Just Google "Zofran" and look up how to use it; if your English is decent, you'll find everything. I think it's Pfizer's.

Thanks to everyone for the advice! I'm going to try to get the Zofran sorted before the next round of chemo, which should be coming up soon—fingers crossed! The blood work has improved a bit, but I'm not sure if it's enough. We've tried pretty much everything: from Beta glucan and Propolis to yogurt with yeast, Taheebo tea, and even mixtures of carrots, beets, apples, and horseradish...

Angela Wright, I think there was a similar thread over on Psychology once. I stumbled upon it while browsing, but it went quiet. I really hope to see you around here too; you've helped us out so much with concrete treatment advice and just being there for us. Honestly, some of your posts are things people should be reading every single week.🙂

Maybe looking for support after losing our loved ones doesn't strictly belong here, but unfortunately, it's an inseparable part of this whole journey. It’s only rare for some. I think, in the end, it actually helps us prepare ourselves better. Though sometimes—very occasionally—I feel like maybe it would have been better if I hadn't learned all this stuff on these pages. Still, the help I've found here carries so much more weight.

When I was reading the post from northernfox9 yesterday, I felt like saying something just to cheer her up a little, but I couldn't quite bring myself to do it. It's just hard... Thank God there are plenty of you here who always say the right thing. northernfox9, we're still reading you!

Grace Fowler said:Hey everyone!!!
So, the results are finally in... and honestly, I don't even know what to tell you guys. The situation is pretty much the same as back in May when they diagnosed the recurrence with those metastases in the lungs (something has really taken root there and just won't budge). On the bright side, they spotted some calcifications, which means the chemo actually did something, and there hasn't been massive progression of the disease. This Monday, I’m taking everything to the oncology board so they can decide the next move. It'll probably be more chemo because I've hit the limit on radiation for my hip area—I can't take any more in that spot. I'm not exactly falling apart over it; maybe I was hoping for a slightly better outcome, but hey, it is what it is. I'm just pushing forward... though I have to admit, even after fighting this war for nearly nine years, whenever these bad results roll in, a certain amount of anxiety always creeps in. I can't keep spinning my wheels in circles, so I'm just moving ahead based on that. Thanks to everyone for the support... I'll check back in once I get the orders on what happens next...
Stay kind and stay brave.
Your Diana

Diana, hang in there!!!

Linda Campbell said:I forgot to mention that I have 4 Navoban Tropisetron tablets if anyone happens to be using them and wants to save some cash—they're mine to give. I know they go for about $20 a piece, so don't buy them, just shoot me a PM.

Did they actually work? I've never heard of that one. My mom is struggling pretty hard during her chemo, and we're just wondering when she'll be strong enough for the next round. Her blood counts just won't stabilize.
And what about Zofran? Is anyone using that? Does anyone know the price?
Thanks!

My deepest condolences!

Monday morning turned into a total nightmare for me. I stayed offline over the weekend, and now I’m honestly dreading what kind of mess I’m going to find on this forum once I finally open it up...

casualpanther1 said:A little bit of good news for once,

Even with my wife’s diagnosis, we aren't letting it break us. If anything, we're pushing harder to just live life normally, and honestly, it’s working for us so far. We haven't let the illness derail our plans. Before she got sick, she had crushed all her exams at the university; the only thing left was her final thesis. Well, yesterday—fifteen months after the diagnosis—she finally defended that thesis and graduated.
Maybe this bit of good news can serve as a reminder to someone out there: don't you dare give up, no matter what kind of diagnosis you're facing or how brutal the fight gets.

Best to everyone,

Huge congrats to you both! We seriously need more positive stories like this in here. Keep fighting that curse until the very end. 🙂

Carol Ramirez, I am so incredibly sorry about your Grandfather.
Last Night I was going through some old posts from this thread (I actually have the whole thing printed out in a binder at home😬 ) and it just hit me all over again how much you fought for him every single step of the way. Your Grandfather was truly lucky to have you; I can tell by the way my own Grandfather lights up whenever his grandkids come to visit.
Hang in there!

I see there was a lot of chatter over the weekend... some good, some bad.
Not much good news on our end, though. Mom’s chemo got pushed back again because her blood work looks terrible; her platelet count is bottoming out around 50, so I am definitely open to any advice on how to get those numbers up! She’s also having a harder time putting coherent sentences together lately.😢

Last Night, we got the heartbreaking news that our aunt's sister in Miami passed away from breast cancer complications.

On a brighter note, I’m glad to see the new website is finally getting moving, and it’s heartening to see that life keeps moving forward for all of you who have lost loved ones.👍

Nathan Bailey, how is your husband doing??? You haven't said a word about how your fight is going.

northernfox9 said:My dad passed away on November 8th at 8:30 AM. The battle is over, but I truly believe God knows best and has him in a much better place now...

I'm so sorry,northernfox9😢
It’s honestly brutal waking up to news like this on the forum—that's the second time this week already. Looking back at your recent posts, I know things have been incredibly rough for your family, so when things reach this point, it feels like the end of the struggle is the only way out. I just hope there wasn't too much pain involved. Hang in there, okay? 🙂

slyseal28,here’s an update on my end: my MRI is scheduled for January 17th, 2008. I was really hoping for an earlier date, but honestly, I'm just terrified of what those results might actually show...

Grace Fowler said:Dear Ivanica!!
....I just got back from the clinic in Germany, so I’m a little behind on everything...Grace

Grace, how are you holding up after the treatment? Any actual improvement yet?

slyseal28 said:A journalist reached out to me regarding scheduling a CT scan. This whole thing kicked off because after my husband finishes his last round of chemo (October 26th), he needs follow-up testing: a spiral chest CT, an echocardiogram, and a PET scan. The only thing we haven't been able to nail down yet is the CT. I mentioned this on my blog, and that's what prompted her to contact me.

At Mayo Clinic, their CT was out of order and they weren't even taking orders at the start of the month (who knows if it's fixed now; I'll try calling them tomorrow, but they didn't pick up today).

I called General Hospital, Holy Spirit, and Vineyard—and all of them are booking for December for dates way into next year.

I also checked with Quest Diagnostics and Diagnostic 2000. They're private facilities, but they do accept insurance referrals. The rule of thumb with them is that if we pay out of pocket, we can get seen almost immediately. If we use our insurance, Quest Diagnostics has an opening on December 17th, and I have to call Diagnostic 2000 on Monday because they couldn't give me a straight answer right now😕.

The journalist said she’s going to write a piece about this, so I wanted to ask you guys: are you, your loved ones, friends, or acquaintances running into these kinds of issues when trying to schedule such vital tests?

How long are you waiting for something like a CT?

I'm heading over this Friday to book an MRI for my mom at Mayo Clinic, so I'll let you know how it goes and what kind of date they give us.

Angela Wright said:Finally, this exhausting day is over...

Even without mentioning everything you told us about what went down yesterday morning (honestly, I’m still speechless), everyone knows you’ve been doing incredible things for your mom. I don't think many people would even attempt half of what you do...
And you still managed to end the story on a high note...🙏
Wishing you a super speedy return to your "normal" life!