Posts by Elizabeth Diaz60

Linda Wright5, please accept my deepest condolences.

KG, I am so incredibly sorry for your loss.

I just wanted to say a sincere thank you to everyone for the condolences and all the support you've sent our way during these incredibly difficult days for my family.
We’re sitting on about 8 Kytril tablets left over—the ones used to help manage nausea and vomiting during chemo. If anyone out there could really use them, please just shoot me a private message. I’d truly love to get them to someone they might actually be able to help.

On this heavy, somber Thursday, my dear mother passed away. She was only 49. It’s been nearly three years since that initial glioma diagnosis, and she spent this last year unable to move. We spent her final ten days at the hospital as things took a turn for the worse, and honestly, we kept holding onto this flickering hope that she might actually make it back home to us.
She spent her entire life, including those grueling final years, surrounded by the people who loved her most. Even in those very last moments, she wasn't alone; my sister, my wife, my sister's partner, and I were all right there by her side. Just like she did throughout her whole life, she fought until the very end.
She truly was an extraordinary woman. Her entire existence was centered around her family—her kids, her husband, her parents. It was always about taking care of us, never about herself.

Thank you for everything, Mom.
Your spirit will live on through us and through our children forever.

It seems like most of us here are walking down the same lonely path.
Ever since Mom got her diagnosis, those visits and phone calls from family and her old friends have been tapering off, especially since she lost her mobility about a year ago. Whenever I run into them out in the world, the conversations always circle back to the same awkward place. It’s obvious they just don't know how to act or what to say. They tell me how "hard" it is for them to see her like this, being so sick and unable to move. Meanwhile, even though she’s often mentally adrift, she still recognizes those same people and greets them with a smile. We don't hold their absence against them. They just don't get it. Honestly, it feels like we're the only ones who truly understand because we're living it. The absolute worst part is when outsiders start lecturing us on how to provide care or manage her treatment—people who haven't even seen her in ages. Some even suggest putting her in a nursing home or something similar. My blood pressure hits the roof every time I hear that. Maybe some people don't have any other choice, sure. But for us? She dedicated her entire life to caring for us with nothing but love. There isn't a chance in hell she's leaving our sight. At home, she’s surrounded by people who actually give a damn—my husband, my wife, my sister, myself, and even the neighbor who watches over her while we're at work. She is loved, and we are going to be right there, serving her until the very end. Every single day she spends with us is precious.
On another note, Mom took a turn for the worse this past Tuesday—trouble breathing, a locked jaw, things like that—so the paramedics rushed her over to the oncology ward. They gave her Mannitol and dexamethasone, which seemed to bring her back to us somewhat. She’s staying at the Mayo Clinic now. She's running a constant fever, hovering somewhere between 98 and 101 degrees.

Please accept my deepest, most sincere condolences on the passing of your father.

My mom is back on chemotherapy again—taking 120mg of CCNU every six weeks—after we managed to go almost a year without any treatment at all. She’s been through this exact same regimen before, and I remember how every single day she was on the CCNU (along with her Reglan tablets) was just defined by brutal nausea and vomiting; even back then, she still had some mobility and was doing relatively okay overall. This time around, we decided to try something for the nausea called Kytril, which we picked up at the pharmacy—it comes in a small box of 10 tablets $227—and honestly, it turned out to be a total game-changer. She took one Kytril about an hour before the CCNU, and then another one twelve hours later, just following the instructions provided. The nausea and vomiting didn't even touch her. I can't help but wonder if our focus on keeping her diet really light helped too, since we've been sticking to mint tea, ginger tea, and very mild foods that don't have any overwhelming smells or flavors. She’s also taking Medrol, which I recall reading somewhere might actually assist with the process.

My mom is starting up her chemotherapy again, specifically those CCNU tablets she takes once every six weeks. She’s completely immobile now. Back when she was still mobile, she took the same treatment alongside Reglan, and let me tell you, the nausea was brutal—we're talking intense, non-stop vomiting. To try and get ahead of the sickness, we find ourselves constantly cycling between Kytril and Zofran. I'm wondering, what has everyone else dealt with in these situations? Has anyone had similar experiences?

Karen Fox36 said:Hey there,
I just wanted to jump back into this conversation about dexamethasone. My mom was staying on 4 mg of dexamethasone until the eleventh month, at which point her oncologist suggested we try switching over to Medrol—specifically 16 mg in the morning and 8 mg in the evening. Honestly, she’s been feeling wonderful since the switch, so we haven't felt the need to change a thing; she’s even moving her legs better now than she did before starting the Medrol. I remember Angela Wright mentioning back then that Medrol might not be quite as effective when it comes to dealing with brain edema, but hey, we aren't having any issues so far. I have to admit, I was pretty confused when the doctor first prescribed the Medrol, especially since it seems like everyone else is using Dexice.🤷

My mom is also on Medrol (she takes 32mg in the morning after breakfast, along with some Ranitidine beforehand). Since she started that dosage back on July 10th, she’s been so much more alert and active, even if she still can't get around much.

brightgardener8 said:Sorry everyone, I’m going to pivot away from these weekend-only threads for a moment...

Ever since my sister was reading one of Blaise's posts over the phone on Friday night just to give us a laugh, I've been counting down the days until Monday so I could check in here (yeah, yeah, I'm stuck without internet at home because I can't stand AT&T and I'm waiting on a different provider to get to my street).

So, as of Friday, Mom and I are officially roommates.
And even though it was just a move from one neighborhood in Chicago to another, Mom acts like she’s relocated to rural El Paso... or maybe Afghanistan... depending on her mood!
Whenever she watches the news and sees men carrying weapons, she turns to me and asks if there's any "unrest happening around here" too...😲

She stares out the window and complains that she thought being on the 4th floor would give her a better view of the Mississippi River.

I even got a compliment because she thinks the choir and orchestra playing in my living room are wonderful—something she never had back in her day—since some program called "svirac moj" or whatever it was was on TV...🤣

Slowly, we're learning her specific language and her way of making weird associations; sometimes I catch myself having an "aha moment" after a few hours because I finally grasp what she actually meant by some nonsense she just blurted out.

And no matter how heavy or serious things get, my sister and I truly found ourselves laughing out loud with Mom several times this weekend.

I want to say this to anyone who is sick, or whose loved ones are struggling, but still has enough of their wits about them to find joy in these moments—not to diminish anyone's pain, of course. This intersection of physical decline and mental fog is honestly one of the hardest things a person can endure.

On the flip side, with almost all types of cancer, you deal with the physical pain and the crushing awareness of the diagnosis and the grim prognosis; since Mom isn't aware of any of that, I sometimes wonder if it might actually be better this way.🤷

I stumbled upon a great old post by Angela Wright. Thank you again for the advice; it hits the nail right on the head.

We're going through something very similar with Mom. Sometimes we can have a perfectly coherent conversation, but most of the time, she’s living in a world entirely her own. Generally speaking, Mom isn't aware of how serious the situation is... Even though she hasn't been mobile for nine months now, she'll constantly bring up things like what she's cooking for dinner or the gardening chores she needs to do tomorrow... Sometimes she sees people we can't see, or mentions events that never happened. Despite everything, just like before the cancer and the loss of mobility, she's still our same old Mom who worries about us (her kids, her husband, her mother...) much more than she ever worries about herself (we practically have to bribe her to eat a second cookie, which she'd normally refuse just so she could leave it for me...). More often than not, though, we find ourselves laughing along with her, trying to steer her mind away from the negative stuff...

I want to wish nothing but the very best for all of you who are out there fighting these illnesses, and for your families as well, as we head into the New Year.

gentlemoose62 and Nesta, thanks a million for all the help. I’m going to look into this a bit more, see what I can find out, and then I'll let you know how things turn out.

Hey everyone. Has anyone here actually dealt with treating post-radiation necrosis? I’ve been doing some reading on Hyperbaric oxygen therapy lately. From what I gather, it involves breathing oxygen under specific pressure levels for set intervals of time. I was wondering if there are any facilities offering this kind of treatment here in the States, or maybe somewhere relatively close by...

electricgardener14 said:My husband closed his eyes for the last time on November 18th, after six months of unbearable pain, suffering, and constant fear. I couldn't help him; nobody could. This illness progressed so terrifyingly fast that it always seemed to be one step ahead of us. I don't even know what I'm feeling anymore—just this heavy numbness, this sense of helplessness, followed by waves of anger at God and at myself for failing to save him. And he wanted to live so badly. Even when he became immobile, unable to move even an arm or a leg, that spark in his eyes never faded. Sometimes I get this sinking feeling that I gave up before he did, that maybe I should have fought harder or tried one more thing, that I let him go too soon. It’s so incredibly hard, and I don't think I'll ever forget that final conscious look in his eyes. It held all the sadness in the world. Does it always have to be this agonizing?
electricgardener14

My sincerest condolences. You truly did everything humanly possible. I often find myself grappling with these exact same feelings while watching my own mother battle her illness.

Angela Wright said:My mom passed away peacefully this morning.
I just wanted to thank everyone here for all the support you've shown me during this incredibly difficult chapter of my life.
I love you all! May God bless you in your own struggles! Just keep holding on.

Angela, I am so deeply sorry for your loss. I haven't checked the forum in about ten days and I'm only just now seeing this heartbreaking news about your mom.

Linda Campbell said:She passed away tonight at 10:30 PM. She fought until her very last breath, and we were right there by her side all day today, kissing her, holding her hands, kissing her face... she knew she wasn't alone.
Don't you ever give up, everyone; just last night, the two of us had everything settled and were supposed to start the new therapy this morning—she was actually feeling quite optimistic about it.
I feel an incredible sense of peace right now because she has finally found hers, and honestly, I don't have a single regret; I fought alongside her until the end and tried absolutely everything humanly possible. I was at the hospital with her two or three times every single day. I was always there to cheer her up, to lift her spirits; she even had the nicest pajamas in the entire hospital and the most beautiful wig, which I went out and bought myself. She was truly an exceptional woman throughout her whole life, and even in these final hours. It just so happens that today is the feast day of Saint Mother Teresa, and she really was a lot like her.
My thoughts are with you all, and please, don't be afraid.

My deepest condolences.

My mom has been having a really hard time swallowing pills lately, which makes taking her medications—and even her daily propolis—a total struggle. Does anyone know if there’s an alternative or maybe a different format available, like a liquid version? Also, I was wondering, what kind of effect would she actually get if she just opened up the capsule and took the contents directly?

Angela Wright said:I mean, just imagine someone trying to rush all the way to Washington, D.C., to take those test results to the specialists at the Mayo Clinic to get a second opinion from one of their neurosurgeons—maybe Dr. Paladin, Melada, or Heinrich. It’s not that the doctors in Indianapolis aren't skilled enough, per se, but isn't it usually true that more brains are better than one when you're dealing with this kind of thing?
Medrol doesn't really do much for brain tumors, honestly. It just doesn't hit the mark the way dexamethasone does. You might want to ask them about it. Personally, I suspect a dose of Mannitol might stabilize her enough to get things moving, and then she could stay on dexamethasone to maintain that state. Most people who have found themselves in this exact position—and several have spoken up here—went through that specific protocol and saw real improvement. My own mother did.

She was actually at the Mayo Clinic back in July when Heinrich performed the biopsy. After that, they sent her off to follow up with her oncologist for the rest of the treatment plan. As for the dexamethasone, we'll try to get a hold of the oncologist to discuss it. I also can't help but feel that the weather seems to be playing a significant role in my mom's condition lately.
Angela, thank you so much for the advice and the support. Let me return the sentiment—despite everything she's going through, your mother is incredibly lucky to have you by her side.

Thanks, Angela Wright. A Mixed Glioma is basically this complex blend of an Oligodendroglioma and an Astrocytoma. While she was at home, she wasn't taking Dexamethasone, but rather Medrol instead. During her most recent hospital stay, though, they actually discontinued the Medrol entirely. I can't help but wonder if that sense of confusion or being "lost" she's experiencing might actually be a side effect of that change? My oncologist mentioned that Temodal is typically used to treat Glioblastoma and Anaplastic Astrocytoma. Mom had her surgery in Philadelphia, which is also where her oncologist is located. She’s surrounded by people who truly love her and are looking after her.

It’s my first time posting here, so I’m hoping someone might be able to offer some perspective or advice. My mother underwent two brain tumor surgeries about two years ago (back in July 2005 and October 2005). That first pathology report identified an Oligodendroglioma, while the second indicated a Grade II-III Mixed Glioma located in the right temporal region. The surgeons managed to reduce the tumor mass as much as possible through surgery, and she followed that up with radiation therapy. By May 2006, she started chemotherapy using CCNU tablets. For a while there, things seemed okay; her quality of life was relatively good, and the CT scans weren't showing any signs of the tumor returning. Then, in May 2007, everything just took a devastating turn. She became immobile in her left leg and arm. Subsequent CT and MRI scans revealed a new growth in a different location. The neurosurgeon told us it isn't operable due to its position, and the oncologist won't consider further radiation because not enough time has passed since the last round. The results from the stereotactic biopsy came back stating: "Most likely post-radiation necrosis, though rare tumor cells are sporadically found in the examined samples, reflecting deep infiltration of the underlying glioma process." To make matters even worse, we're now dealing with a thrombosis in her left leg, which kept her hospitalized for three and a half weeks. She’s home now, but her condition is worse than ever. The paralysis in her leg and arm has progressed, and most of the time, she seems lost, drifting in and out of space and time. There's a chance her oncologist might try another round of chemotherapy, but honestly, it feels like the doctors have already written her off. As a family, we're struggling to accept that kind of prognosis; we want to do everything humanly possible to give her a fighting chance. If anyone has any insight or advice, I would truly appreciate it. Sending my best wishes for healing to everyone reading this or participating in the forum.