Posts by Roger Hall15

Nancy Hernandez43 said:My mom went through some pretty intense testing over at Boeing yesterday, and of course, my dad just sent a quick text saying "everything is fine." It’s the usual routine, really—they're somewhere on their way back now, and I won't actually know anything more for a few days.

I'm honestly a bit stunned when I think about how much everything looked last year around this time compared to where we are today. I really want to say thanks to everyone on this forum, because it was here that I found both the emotional support and that massive pile of information I was trying to pass along to my mother. Let's just hope this good health holds up for a while... so we can finally start moving past all that constant anxiety.

The fight goes on,

hang in there, you warriors. kiss

👍 It’s honestly such a breath of fresh air to read news like this! 🙂

shadowmason6 said:Mom is only taking Native Propolis for now—the nutritionist thinks it’s too early to start on Beta glucan—but honestly, I just want to hit her with massive doses of everything all at once.🙂 Someone else mentioned they use 15 tablets of Native daily (which is nearly four times the recommended dose on the label), so I wanted to ask those of you who know more about this stuff—can higher doses actually cause harm, like to the stomach, the gut, or any sores???
When did you all start adding other supplements after surgery, based on your own experiences, and what kind of dosages were you using???
And one last thing—sending strength to all the fighters out there!!! Nancy Thomas18, are you listening to me!? 🙂

Native Propolis is excellent, and that company carries several other products too. You can order everything online, which ends up being much cheaper than buying from pharmacies (though most pharmacies don't even carry their full line, just the Native Propolis since that's their bestseller). I don't believe higher doses would be harmful, but the highest amount I ever gave my mom was three tablets, twice a day. I'm not sure if a larger dose yields better results; I suppose it varies from person to person. I completely get that urge to go all-in with huge doses just to see some progress and feel a little bit of hope...
But let's not lose track of time. In principle, all these supplements need time to work—that damn time we're all so terrified we don't have. As far as I know, whether it's Noni, Native Propolis, or various teas, you can really start any of them immediately.
The key is just staying patient and consistent.

We've hit the one-year mark since the diagnosis, which feels like a miracle in itself. Since Mom refuses to go to the hospital or even for a checkup, we did bloodwork (and a urine test) at home, and the results are actually great—much better than last time. Everything seems to be improving. Her doctor agreed to look over the results, so we'll see where things go from here. I assume it'll be more of the same. Of course, he wants her to come in for an exam, but she won't hear a word of it. Now she's celebrating those good results by coughing and smoking cigarettes.🙄

Fortunately, she’s eating, though she isn't gaining any weight at all, and I try my best to make sure everything is healthy and fresh, but man, it's a struggle. Every single meal starts with "I'm not hungry," or "Oh, I wouldn't eat that," or "I can't eat this," or "Jesus, look how much you gave me," yet somehow she eats it anyway. She won't touch strawberries, won't touch peaches, won't touch parsley ("those weeds"), 😁 won't take beet juice, won't touch dark juices, won't touch apples, won't touch compote... it's too hard, it's too hot, it's too spicy, it's too soft, it's too chewy, it's too salty, it's not salty enough...

The trouble is when she gets nervous; then she'll gulp down huge chunks of food and end up vomiting later. I watch her as closely as I can to prevent that, but sometimes, goodness knows, it just happens. And then I get worked up too, so I guess I just miss the signs. Honestly, we have a nerve problem—more mine than hers, really.😁

She is incredibly weak and can barely walk, but she walks. If she couldn't walk, she'd just be crawling around the apartment. She won't use a cane, and she won't use a walker.

I look at the clock, and I know she’s about to start the sneaking around with cigarettes again. She'll light one up and insist it's her last one for the day. Then I'll head out with the dog, and she'll light another one while I'm gone. Before bed, I can already hear myself yelling: "Not the smoking again!" and she'll just say, "Just a few puffs before sleep." And then she coughs until she finally drifts off. She's hidden two or three cigarettes in about ten different spots around the house, just in case I have one of my episodes and decide to start throwing cigarettes out the window.

I’m dedicating this one to Nancy Thomas18. 👍
We don't back down. 👍

Adam Myers22 said:My father passed away two days ago after suffering through fifteen long months of this. I just wanted to say thanks to everyone here for the posts, and I’m especially grateful to Angela Wright.

Please accept my deepest, most sincere condolences.

Nancy Hernandez43 said:It’s honestly not surprising at all that she’s smoking or trying to hide her pills—fear really does a number on people like that, and I saw my own mother act in pretty much the exact same way.

Amanda Miller69 said:My mom used to pull similar stunts when she was staying at the hospital.

I can't even begin to tell you how much you guys have helped me out. 😘

Nancy Thomas18 said:Smoking is pretty much what keeps me upright, and honestly, just like your mom, I've always had a cigarette practically glued to my hand.🤷I’m not exactly a saint myself, except for that one week when I’m heading in for chemo. Hang in there.

Hang in there, lady! 🙂

You're quite a bit younger than my own mother, and from reading your posts, it's clear you've got a really strong spirit. I know smoking isn't great—you know that better than anyone—but then again, I smoke way too much myself, mostly just to deal with the stress and the exhaustion. It’s all going to work out fine. 🙂

As for my mom, there's no way we're getting her in for an appointment right now, especially since there's talk about some tuberculosis cases popping up over at the local community clinic, and apparently even among the staff if I heard correctly. It's honestly terrifying.👎

Brenda Walker58 said:Hey everyone, hang in there!

Hi there, hope you're doing alright. 🙂

Amy Gray75 said:Hey there,

I could really use a little help here.
My mom is going through chemotherapy right now, and she’s lost her hair. We actually bought her a wig, but she honestly feels much more like herself when she wears scarves.
Does anyone know where I can pick up some 100% cotton scarves around Washington, D.C.?

Thanks so much in advance..

I know there's a shop that sells wigs—it's somewhere near a local suburb, I think.
Most of the time, my mom prefers wearing those headwraps that look almost like a turban,😁 you just pull them over your head and tie them at the front. We call them turbans, even if they aren't technically that, but they carry all sorts of stylish wraps and turbans there.
The prices are absolutely outrageous👎 considering it's basically just a scrap of fabric mixed with a bit of elastane.
Honestly, they are incredibly easy to take care of, too.

If I were you, I'd try to find some nice fabric, grab a pair of scissors, and just DIY something yourself. Those silk scarves used for tie-dyeing aren't nearly as expensive. And you can probably find plenty of cotton ones at those local Indian grocery stores.

Please accept my most sincere condolences.

Hey there, thanks. 🙂

We were using Prosure—we bought a little bit, though we definitely got more out of it than what we paid for—and we stopped once we ran through our supply because we just wanted Mom to be able to eat somewhat normally. Her doctor wasn't exactly eager to write a prescription for it, though, since she "eats enough" in his eyes. I try my best to keep things varied and consistent, making sure everything is as healthy as possible, but I have to prep everything myself and basically watch over her while she eats, at least for those three main meals.

In my mind, diet is the absolute most important factor, so I focus on making vegetable-heavy soups with grains (when I can actually get her to swallow them) and stews; there’s really nothing else available. I make sure she gets juices, fruit whenever possible, meat when she asks for it, and all of it on a regular schedule. Since I'm a vegetarian and try not to live solely on snacks, I don't find it difficult to whip something up for her too. I won't mention that I marinated chicken in soy sauce just to make it tasty for her, or that I slipped a spoonful of ground flaxseed into her smoothie. 😁 Naturally, she’ll just insist on "a little ham and bread." Sure. Fine. But even then, she needs something extra that I blend together for her. 😛
As for her appetite, well, she refuses to admit when she's hungry, but I can tell how things are going by the way she eats. It’s likely just one of those things that keeps her occupied. She'll say things like, "I'm not hungry, not right now, oh goodness, that's way too much, I couldn't possibly eat that, it'll make me feel sick," and then she ends up eating it anyway. What is better than before is her digestion; it isn't perfect every single day, but it's much more regular than it used to be. It’s been a long time since we had to resort to those little suppositories, herbal teas, or any of those various supplements and remedies we tried.

And this business with that doctor specializing in mushrooms, I'm not so sure. I don't personally trust anyone selling miracle capsules or tonics for huge amounts of money, but if it works for someone, why not? We are also (again) taking Noni, though I think I messed up with the Ginkgo; I gave it to her for circulation, but her blood pressure started fluctuating wildly. She isn't taking it anymore, so we'll see if that was the cause. Maybe someone with more muscle wouldn't even notice, but with her few pounds, everything hits her hard. Or maybe it's just these crazy times. 🤷

Amanda Miller69 said:My bad, everyone, I know this was totally off-topic and probably doesn't belong here in a space where people are actually fighting their battles. I'm hoping to get back to my usual optimistic self soon, because honestly, I've always been a glass-half-full kind of person.

Oh, you bet you do, because you're a fighter through and through—a hell of a fighter, actually. Always have been. 🙂

There's a whole damn army standing right here in this thread with you.

Sending nothing but love to everyone, just hang in there. You've got my full support, heart and soul. 🙂

I mean, honestly, it’s just one of those things where you find yourself staring at the wall, wondering why everything feels so incredibly repetitive lately, almost like we're all just stuck in this endless loop of the same old patterns. It's funny how certain moods just settle in without any warning, much like a slow fog rolling over the Bay Area, leaving you feeling a bit lost in the middle of absolutely nothing at all. Nancy Hernandez43 says:

Melissa Kim45, how’s your mom doing lately? I was just wondering what things are looking like on your end of the country.

Well, alright then. That’s actually kind of funny. 😁 How’s your dad holding up after the surgery? I'm keeping my fingers crossed for him. 🙂

The situation here could basically be summed up as "everything is falling apart and we’re just trying to keep our heads above water." My mom is having a hell of a time with her weight; she hasn't been able to get it up at all, and she’s still sitting at 35.5 kg—though that’s really just because she was given a diuretic, so most of what she’s weighing right now is just fluid she was holding onto. She can’t seem to push past 37 kg no matter what we do. She really needs to go in for a checkup, but she absolutely refuses because she’s terrified, and honestly, I don't blame her. Having some decent test results, or even just something that isn't catastrophic, would give her the boost she needs, but getting her through the door to see a doctor feels like an impossible task. We really don't want to force her into anything, but at the same time, it's hard not to feel like we have to. She's just so incredibly weak, and it's not even like she isn't eating.
Honestly, she’s just out there performing this little act, begging people to come over and drop off more Leksaurin. You know, one person tells me about it, and then someone actually shows up with the meds. I have to wonder what kind of person looks at someone in my mother's state—both physically and mentally—and thinks, "Yeah, I can definitely bring her 3mg Leksaurin tablets." It’s wild. I actually found two crushed tablets wedged into the armchair, an empty wrapper tucked inside her pillowcase, and another half-used pill hiding under the rug. Seriously.😲
I gave that woman a call earlier, and honestly, I have a feeling she’s not going to show up again.😁
It was a real struggle getting that information out of her, honestly. In moments like those, she becomes incredibly sharp and cunning—just impossibly persuasive and relentless in a way that catches you off guard.
I find myself asking her if what I’m giving her isn't quite enough, though deep down, I know that isn't the issue. In the mornings, I'll check in to see how she slept, and she says fine, but then she starts acting too precious around everyone else, claiming she can't sleep and that nobody is willing to step up and help her. Honestly, it just feels like a transparent way of signaling that she knows exactly what she's doing and that she shouldn't be doing it in the first place. Besides, she clearly enjoys the little rebellion, and I've come to realize that much.

She starts coughing, just hacking away, and then she grabs this water pitcher and tries to drink while she’s still choking on it... I’m just sitting there watching water spray everywhere, her face turning bright red, drooling, all while she’s clutching a cigarette in her other hand like nothing is happening, and honestly, I’m just stunned. You can’t even say a word to her. She just snaps at me, "Why are you always picking on me?" So I pick up my phone to call someone, thinking, "She's going to take everything from me!" She’s pacing around the apartment, tripping over things, practically falling down. If I dared to mention that I’d rather be watching CSI right now, she’d just turn it back on me and say, "Well, now I'm the Pyramids!" 🙂 I'm not even looking, honestly—it doesn't matter, I’ll just leave her be—but she isn't exactly focusing on the Pyramids or anything useful; she’s just dragging herself around the apartment. It’s a miracle she hasn't completely lost it by now. Do you want to get busy? Where did I put my toothpick? What are you even up to? Is life on the internet really that fascinating? And when are you actually going to trim my nails? Then someone calls, and of course, I have to hear it: "Do you want a little bit of Melissa Kim45?" 😠
It feels like it’s happening every ten minutes now.

She really chewed me out yesterday, so I ended up giving her some Haldol last night, even though she isn't officially on it anymore, since her doctor told me it's fine to use if she gets particularly restless.

I’m just completely wiped out, honestly. I feel like I've hit a wall where everything and everyone is just grating on my nerves, and I have absolutely zero patience left for anyone today.🙄 My brother is feeling exactly the same way, and he actually told me straight up that he has no idea how he’s going to keep his head above water. It feels like there’s absolutely nobody we can lean on, because honestly, no one is stepping up to help us out in any meaningful way; it’s just us against the world in this mess. On top of everything else, he’s constantly being nagged about bringing the grandson over to see her, but then the second the little guy even breathes near something, it’s a total meltdown—don't touch this, don't move that, you're going to kill my goldfish, you're going to soak the table, you're going to ruin the couch, it’s going to tear, it’s going to wrinkle... it never ends.
So, if that's how it's going to be, then what on earth are we supposed to do about it? I mean, seriously, we're talking about a two-and-a-half-year-old who honestly acts like they were programmed in a lab to be the Terminator, and if that’s the case, then what exactly is the plan here? It’s just one of those things where you look at the situation and realize there's absolutely nothing left to say. Honestly, it's enough to make you lose your mind.😍 😁

I’ve got this nagging feeling that I should probably just sit down and re-read this entire thread from the very beginning, maybe then I’ll stumble upon some random idea for something else to try or give her, because honestly, my brain is just completely tapped out at this point. It feels like modern medicine has already done everything it possibly can, and I seriously doubt there are any other therapies left on the table.

Sarah Kelly51 said:And I just don't know how to wrap my head around it.

Honey, you have my deepest, most sincere respect. I can tell you're putting on a brave face for the world while everything feels like it's falling apart inside, but I also know you are an incredibly courageous and resilient soul. It honestly breaks my heart that someone so young has to carry a burden this heavy. I’m quite a bit older than you, and even I struggle to find a way to process this kind of thing. Dealing with the day-to-day trials is its own battle; I just take things one morning at a time and try to get through the day as "normally" as my strength allows. I feel lucky, truly grateful, that I even have these little windows of peace to reach out to you all. Hearing that she managed to change the channel on the TV is such a small thing, but it means she's still here, fighting.

And that goes for all of you, too. 🙂

As far as everyone else is concerned, I have one message to send from the bottom of my heart:

:2up:

I’m not angry, nor am I bitter (at least not for more than an hour or two)😁 and I forgive everyone.
It’s just that they won't be spending much time in my orbit anymore. Forgiveness is one thing, but forgetting isn't really on the table since that wasn't the intention here.
There were all those people who felt the need to say things to me like, "Did you hear that guy passed away? Any idea what happened?" followed by the sentence I personally haven't found the nerve to utter: He died of cancer.
Why on earth would you tell a woman battling a serious illness that someone else died from that very same disease?
How do you even explain that you don't do that, unless you're someone who genuinely feels like they might hurt someone? I once caught one person calling my mom's cell phone, letting it ring twice, and then hanging up, knowing she’d call right back. When I called that person back to ask if something was wrong,😁 the response was basically: No, no, maybe I just didn't let it ring long enough. Get lost!
And to the person who brings her sedative pills without even asking, I wish you nothing but the best, because karma will catch up to you, and when it does, you’re going to need that "best" quite desperately. So, there you go.
To the people who never bothered to ask what was needed (since nothing was needed, which they should have known), yet were absolutely overflowing with unsolicited advice about medications and cures—I wish them the best for the exact same reason, as well as those who reached out just once and those who simply stopped reaching out altogether.

I wouldn't wish what we're going through on anyone, but since I won't be around them, I won't know.😁

Truly, the only way I could think of to protect myself or my mother—not just to shield us, but to prevent unnecessary harm and the pointless draining of energy that actually constitutes living—was to say goodbye to certain people. Without actually saying anything.😁
But, honestly, I remain deeply, deeply grateful to all of them. They served as my greatest teachers; through them, I learned more about myself and others. Life is full of staged performances and fake displays, and situations like these are just ways to realize the truth of it all.

Linda Wright5 said:Hello to all the fighters out there,
I read this subforum pretty regularly, though I tend to write more over on the association's forum.
I have a question... how are you all dealing with the psychological struggles of those who are ill?
My sister has ovarian cancer, she’s dealing with deep vein thrombosis and ascites—fluid buildup in her abdomen—so she hasn't been very mobile for about ten months now. Sometimes she acts like a spoiled child (even though she's 39), getting angry if things aren't done exactly her way, and she loves to control and manipulate people... And honestly, sometimes I just don't know how to handle her... I don't want to give in to her too much, but sometimes she truly drives me crazy... Should you be blunt with people like this, or should you walk on eggshells and just endure their outbursts?
She saw a psychiatrist a few times and was happy with her, but she hasn't been back in quite a while...

We don't "deal" with it. Patients themselves (or rather, the family members acting as proxies) basically have to find their own psychological support or just lean on one another. We actually took my mom off certain pills like Haldol and Prazina on our own initiative. I'm not saying that's smart or how it should be done, but Mom isn't a zombie anymore (I actually got scared when I saw her expression once). Since she stopped taking Prazina in the evening, she hardly has any accidents with her bladder or bowels. It's not a mobility issue, though she is quite limited now, but without those specific meds, she's doing better. She sleeps with Xanax. What I mean is, aside from the pill-pushing, patients don't get that kind of support, and they desperately need it. Cancer is the kind of disease that frays your nerves to the breaking point. The treatment does the same. I'll start worrying seriously when she begins crushing cigarettes into her soup or talking to the zucchini, but until then, we won't let her into the house or let her take those kinds of drugs. To be honest, we don't even know anymore how much is dementia, or Alzheimer's, how much is just the cancer breaking her down, how much is caused by electrolyte imbalances, or how much is due to the heavy treatments. Of course, we fall apart every single time she has a fall because it reminds us of how it was at the beginning, and we can't help but wonder if the cancer has come back.

Anyway, we are constantly at each other's throats.😁
I am not ashamed to admit that I snap and yell at her when I see her with a cigarette more than a few times a day—which, granted, she's allowed to do (so what?). She refuses to use an ashtray "just so I won't lash out," and then she staggers around the apartment with a cigarette in one hand and uses the other to steady herself. Everything is a mess; she's burned through everything. I go crazy finding toothpicks in every corner. She hides them everywhere and uses them multiple times. I can talk, shout, pray, or sigh, but she just rolls her eyes. She's learned exactly what works for her and what doesn't—"I forgot," she'll say. "You know I'm sick." In a year and a half, I haven't been able to teach her to check her blood pressure in the afternoon. When it comes to things that suit her or things she wants, this helpless old woman turns into a devilishly clever manipulator and an incredibly skilled liar. When I realize what she's up to, I lose it, and I don't hide it. She plays games with vital things: food, drink, medication...
And this is being GOOD compared to how it was just a few months ago.

Naturally, we try to control everything, but she finds ways around us. I have no idea how a woman who is practically immobile (she's almost there; she can only go out with assistance and can't manage alone even in a dream) manages to get hold of sedatives. What am I supposed to do? Call everyone who visits her, even just by phone? She is alone for three hours in the morning and three in the afternoon, and during the middle of the day, she has a housekeeper who has already learned most of her little tricks. What kind of idiot would bring her pills? Last time, I found tablets hidden in a pillowcase, and she only admitted to one single pill and said, after being questioned,😁 That was actually brought to her by a woman who ended up moving to the States in the meantime. Threats aren't going to work; she’s defending this with everything she has.

Then again, whenever I really corner her and start yelling my head off and being relentless, I end up feeling terrible. I mean, maybe this is the last time for this one thing or the last time for that other thing, and I just know that one day I’m going to miss this whole chaotic asylum, even if from where I'm sitting right now, it doesn't look like there's any version of life where you aren't constantly testing your nerves. It's like I have this gut feeling that behind all her madness, there's some profound, heavy suffering. And honestly, it does look that way, because once I manage to catch my breath and calm down, I realize they aren't doing this on purpose. They’re just scared, overwhelmed, helpless, and miserable—it isn't easy for them.
As for how we fare alongside them, well, that's something only we can truly understand.

I don't think we need to go overboard trying to coddle or protect difficult patients. If anything, that just makes them feel more frightened, overwhelmed, powerless, and pathetic. Maybe that negative attention is the only way they can still feel like "real people," the way they used to be.

There's a massive age gap between my mom and your sister, so I doubt this will help you much, other than maybe realizing you aren't alone in struggling with these kinds of issues.

Keeping my fingers crossed for your sister and for all of you.🙂

brightgardener8 said:Melissa Kim45, how are you doing? How’s your mom holding up?

It’s been quite a while since we’ve seen any of those witty posts of yours...

It’s been about a year since the diagnosis, maybe a year and a half since she was first admitted to the Mayo Clinic, and honestly, Mom is just... there. Not exactly great, but I don't really know what to make of it all; I suppose, by some standards, they should be satisfied with where things stand. Personally, I just feel sort of numb.😁

How have you been? 🙂

Please accept my deepest, most sincere condolences. 🙂

Please accept my deepest, most sincere condolences. 🙂

Anonymous said:I didn't have the energy to reach out any sooner, but my aunt passed away last week... she just drifted off to sleep. I wanted to thank everyone for all the support you've shown me; please keep fighting and stay strong for me. She was such a fighter, truly battling until the very last second, fighting so hard just to stay awake. I am proud of her with everything in my heart.

Please accept my deepest, most sincere condolences. 🙂

Amanda Miller69, hang in there. 🙂

Nancy Thomas18, don't let them get to you! 🙂

To everyone here, whether you just joined or have been around for a while, stay strong, you brave souls.👍

rustyscout31 said:My mom is facing chemo soon. She’s incredibly frail, and I’m honestly terrified she won't be able to handle it. Looking through some of the replies here, I saw people mentioning mint candies and popcorn can help. Right now, she’s sipping on Aloe vera, green tea, and some raw propolis, along with natural beet and carrot juice alongside her regular meals. Is that enough, or should we be looking into something else? 🤷

And one more thing... my mom isn't exactly a "fighter." She never really was. She's always struggled with depression and a tendency toward self-destruction. My sister and I are pouring everything we have—all our energy and love, on top of our own jobs and families—into making sure she gets whatever she needs. She’s become so reliant on us that she doesn't even keep track of whether she’s actually taken her medication. We tell her every single day that SHE needs to find that inner strength to heal, but it feels like she just doesn't have it in her. We haven't told her the full prognosis yet—that the metastases have spread and the surgeon said she might only have a year left. We're just afraid that knowing would break her. Just like it's breaking me.😢

I'm deeply attached to her; every day I get to spend with her feels like a gift from God. I'm a very emotional person, and watching her this sick and weak is devastating. The medical prognosis sent me into a tailspin, though since it's been 15 days since her surgery and I've read so much on this forum, I’m trying to take everything with a grain of salt...

Honestly, all of that might actually be overkill. Just try things out and see what settles well with her. I've heard that overloading on supplements can actually strain the system and mess with how things function.
As for my mom, she isn't doing chemo at the moment; she’s currently taking a break from the raw propolis and is drinking noni juice instead. She's also on a B-complex and various other vitamins, and I make sure she eats as healthy as possible.

Regarding the rest of it—you’re going to have to carry that weight for her. That’s just how it works here in the States. It’s almost been a year since my mom was diagnosed. Back then, this time felt like some distant, unimaginable future. And yet, here we are—time has flown by for both of us. I am certain today that Mom is still with us partly because of the sheer amount of energy my brother and I poured into her without even asking permission. We were running ourselves ragged, but we never backed down. One of us would hit a wall, and the other would pull him through. No meetings, no long discussions required. When you just commit, it happens.

Maybe your mom doesn't have that inner strength herself, but you and your sister certainly do. Or maybe she does have it, and she just needs you to help her find the way back to it.

Good luck. 🙂