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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 70 views · 3.9K replies

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Participants James Cox6Lisa White54shadowmason6Angela Wrightbrightgardener8Melissa Moore39James Martinez3Grace Stewart6Megan Fowler78Zachary Howard2Ashley Rodriguez41Douglas Lee13rowdyheron17placidheron24slyseal28jadesailor14Michael Newman3jadetinker42Benjamin Grant6wanderingharbor61cosmicviper76Dana Baker37Jason Torres5Peter Chavez6 …
James Cox6 James Cox6 Active MemberOP
150 messages
joined Mar 2009
#521 ·
My mom... she didn't start running a fever until after her 9th chemo session (just in the evenings, around 99°F—100°F, paired with intense headaches 😢)
I was told it's because her body is finally starting to fight back against the chemo—that these are the "real" symptoms kicking in 🤷. Apparently, the fever and headaches are just her system reacting. They claim she hasn't felt this way yet because she has a strong constitution and good blood counts—unlike people who react heavily after the first or second round
.
Has anyone else had a parent deal with symptoms like this during chemo? And what do these symptoms actually signify? 🤷

Thanks 🙂
James Cox6 James Cox6 Active MemberOP
150 messages
joined Mar 2009
#522 ·
I have no clue what’s up with this mess 😢

Personally, I'm hoping for the best 🙂
Frank Wright13 Frank Wright13 Newcomer
3 messages
joined May 2012
#523 ·
So my mom is doing a bit better. Her bloodwork looks fine, just slightly low on iron, but otherwise, she’s solid. She’s still dealing with some diarrhea, though it's not as intense as before. She’s heading into the city next week to get her sutures removed, so we'll see what Dr. Kocman has to say about everything...
Lara, how are you handling "that" during your pregnancy?
shadowmason6 shadowmason6 Newcomer
1 message
joined Oct 2008
#524 ·
Kate Reed63 said:...she had terrible diarrhea at first, which is starting to settle down now, though it's still painful and just totally exhausting her, and the doctor mentioned this could drag on for 2-3 months,...

Hey, sorry I've been MIA for a bit, so please forgive me if any (potential) advice from my end comes a little late... I don't have any direct experience with digestive issues like this, but my mom dealt with really intense diarrhea after her colon surgery, and it kept coming back even after chemo. We felt like we finally managed to get things under control using some kuzu powder (you can usually find it at health food stores). I actually read later on that moms use it to help stop diarrhea in small kids too. You just stir a teaspoon or two into some broth or make a specific drink out of it. Ask when you're buying it, or I'll let you know once I dig through my books at home...
Also, cooking rice for a long time until it's almost mushy (an Instant Pot is probably best for that) can really help...
Frank Wright13 Frank Wright13 Newcomer
3 messages
joined May 2012
#525 ·
shadowmason6 said:I’ve been off the grid for a bit, so sorry if my advice is coming in late. I don't know much about dietary fiber, but my mom dealt with severe diarrhea after her colon surgery and chemo that kept coming back. We felt like we finally got it under control using kuzu powder (you can usually find it at health food stores). I read later that moms even use it to help stop diarrhea in toddlers. You just stir a spoonful into soup or make a specific drink out of it. Ask when you buy it, or I'll let you know once I dig through some books at home.
Also, cooking rice for a long time until it’s almost mushy (an Instant Pot works best) might help.

Thanks for the reply. If you could look into that kuzu powder for me, I’d really appreciate it. We don't have many health food stores around here, so if you find anything, let me know where to look in a big city like Chicago or New York.
thanks
shadowmason6 shadowmason6 Newcomer
1 message
joined Oct 2008
#526 ·
Kate Reed63 said:thanks for the reply, if you could just double check that kuzu powder stuff for me I'd be super grateful because we don't really have those kinds of shops around here, so if you find anything let me know where to look in NYC or maybe Chicago if you happen to know
thanks

If you're hanging out in Chicago, you can definitely find it at a Bio@bio store (over on 24th Street). Not sure about the others though.
In NYC, they have their own spots too (like on Ilica72, Jurisicev 28, down on level -2 of the Avenue Mall, or over at Ozaljska87).
I really hope nobody thinks I'm trying to run some kind of ad campaign here, because honestly, I feel like I've already recommended kuzu to someone else recently...
I'm pretty sure you can pick it up in other health food stores too.
I'll dig through my books—specifically my Makrobioticka Domac ljekarna one—to find the recipe for that drink since I haven't made it in a while... I think it's actually an "umeshokuzu" tonic, boiled with umeboshi plums for maybe 20 minutes or so until it turns translucent...
Anyway, you can stir it into soups (just keep stirring toward the end of cooking and it thickens everything up a bit), fruit compotes, pudding... now that I think about it, my mom used to drink it raw too, probably mixed in with some supplements (maybe Bio@bio, I can't quite remember)...
Are you from near Ogulin? If you can't track it down in NYC, but it's easier for you to swing by Kansas City, just shoot me a private message and we'll figure something out... I live right near KC, so I wouldn't mind dropping it off for you, no biggie!
Frank Wright13 Frank Wright13 Newcomer
3 messages
joined May 2012
#527 ·
Look, I'm from Ogallala, so driving to Kansas City isn't an issue, but my brother lives in Seattle, so I'll have him check things out and ask around there. Thanks for getting back to me—it's worth trying everything.
We'll talk again if my brother can't find anything in Seattle. If you track down that prescription, let me know.
Thanks so much...
William Wells4 William Wells4 Newcomer
5 messages
joined May 2009
#528 ·
My sister is heading into her eleventh surgery today... they’re claiming this is finally the last one, but honestly, they say that every single time. Every time we go through this, the anesthesia becomes harder to manage, the recovery takes longer and longer, and she—along with all of us standing by her side—just feels more and more exhausted by the whole ordeal.
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#529 ·
Kate Doyle45 said:My sister is heading into her eleventh surgery today... they claim this is the final one, but they say that every single time. Every time, the anesthesia gets harder to handle, the recovery takes longer, and she—along with all of us supporting her—just ends up feeling more broken.

I was watching a program yesterday about a young girl who had a benign tumor in a location so highly vascularized it was considered inoperable, leaving her facing certain death. They ended up putting her on chemotherapy, which shrunk the tumor down enough that they could finally take it out easily.
Look into that possibility.

Stop being miserable! You have to be her rock, encouraging her and convincing her that things will turn around, that life will improve, and that she can live a happy life despite all this.
Whether tumors are benign or malignant, they feed on bad emotions and negative vibra, while positivity kills them off—that’s a proven fact!
William Wells4 William Wells4 Newcomer
5 messages
joined May 2009
#530 ·
They might also put her on Methotrexate. We’re truly trying our best to stay positive, but when we hear she has to go under the knife again, it feels like the sky is crashing down on us... then the cycle starts, where everyone begins offering mutual comfort and reassurances that everything will be fine, and it just goes on like that for three years straight. If it weren't for her wonderful boyfriend being right there by her side—not minding at all that so many of her teeth have been pulled or that she can barely even speak—we'd be lost. We all try to think the best, unable to even imagine for a single second that things could get any worse. Thanks for your kind words... this is a site I've read frequently, but I never imagined I'd one day be using it to pour my heart out. Thank you for this community, and for everything you do for others facing illness, even though, sadly, you lost your own battle.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#531 ·
Kate Doyle45 said:They might even prescribe her some Methotrexate. We truly try our best to maintain a positive outlook, but when we hear she has to go under the knife again—as if the sky were falling upon us—it triggers this cycle of mutual consolation and reassurances that everything will be fine, which carries on for three years straight... It is quite a blessing that she has such a wonderful partner by her side, someone who isn't bothered by the fact that so many of her teeth had to be removed or that she can barely speak. We all tend to think the best, unable to let ourselves imagine for even a single second that things could get any worse. Thanks for your kind words... this is a page I have read frequently, though I never imagined I would one day be using it to unburden my soul. My thanks to you for this space, and for everything you do for other patients, even if, sadly, you lost your own battle.

Angela Wright has essentially written everything I would have said myself. It is difficult to accept that this situation is repeating itself, and the fear feels even more heavy than it did at the beginning, yet with courage and this shared sense of love and care, you can all look back and say how much you have already overcome, and that the most important thing is simply to keep fighting.

In truth, battles aren't even truly lost once a person realizes just how much weight they were actually carrying...

By some miracle, my mother fought through it, and her results are currently good. Yesterday, she entered the hospital for the twentieth time, and the fear and bitterness were visibly more intense than they were at the very start of her journey when the diagnosis was still uncertain. Sometimes it is hard enough to face one's own illnesses, but it is even harder when you see others suffering in the hallways, especially when those people are young.

Walking through the hospital alongside her, I found myself feeling different. I looked into the eyes of every patient, silently wishing they would believe and fight, and when I shook the hands of the doctors and nurses and saw that despite every lost battle—which takes its toll on them too—they remained bright, smiling, and spoke with a pleasant sense of humor, saying things like "we hope we don't see you quite this often" or "just stay cheerful," I realized that while death is inevitable, one should strive to manage their days and their life with cheerfulness in every moment.

Do not be despondent, but rather, find your courage! There is no reason to give up, and regardless of how long the recovery takes, the most important thing is that your sister recovers after every surgery.
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#532 ·
If anyone happens to be looking for some medical insight tonight, tune into ABC at 10:20 PM. They’re hosting a segment called "Face of the Nation" focused on prevention and treatment strategies for serious oncological and cardiovascular diseases here in the States. Might be worth a watch if you're interested...
William Wells4 William Wells4 Newcomer
5 messages
joined May 2009
#533 ·
Nancy Hernandez43, thanks so much for those kind words and all that positivity... I truly wish strength in this fight to every single one of you and your families. Most importantly, I'm sending my heartiest wishes for health and love to everyone. Please, stay strong and hang in there!
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#534 ·
Amanda Miller69 said:Tonight on ABC at 10:20 PM, the program "Faces of the Nation" will be discussing the prevention and treatment of severe oncological and cardiovascular diseases here in America, so if anyone happens to be interested...

Thanks for the heads-up. We won't be able to tune in because of my mother—she’s still having a difficult time processing everything—so if there happens to be a way to watch it online later, please let me know where!

The truth is, a topic like this really should capture our attention, and we all ought to be more proactive about it... but it is what it is. Not everyone possesses the same level of courage or energy...
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#535 ·
Kate Doyle45 said:Nancy Hernandez43, thank you for those kind words and all that positivity... I wish nothing but strength in this fight for all of you and your families, along with what matters most in this life—health and love. Please, stay strong, everyone...

I can only speak to what this illness has meant for my own little family based on our experience. Just two years ago, things were unimaginable, yet now, we can actually spend several days in a row walking and talking together as a group of four... My mother often asks herself why this had to happen to her, but the truth is, perhaps Providence intended for this to occur just so we could become a true "all for one and one for all" kind of family...

No matter how well everything seems to be going right now—believe me, I feel that same paralyzing fear I felt the night I first learned she was sick, though I never let it show—I find myself applying ointments to her skin to distract her from her thoughts, and instead of offering soft comforts, I sometimes find myself being quite blunt, almost critical, just to spur her into being more resilient...

You know as well as I do that when you look at someone suffering, you desperately want to shoulder at least a portion of their pain; you know that when you see them ill, you long to promise them a full recovery; and you know all too well the weight of helplessness, because while you cannot guarantee those things, you can ensure that life moves forward along a slightly more meaningful and brighter path... by helping to ease the heavy thoughts and anxiety, and if you can manage to mix a bit of humor with a dose of honesty, you might actually bolster her hope and faith... A healthy person has endless desires, but a sick person has only one... and they simply cannot afford to lose it...

Hang in there...
Casey Palmer5 Casey Palmer5 Regular
470 messages
joined Jan 2016
#536 ·
So, here I am again... basically putting my life on pause for a bit.

Deleted for my own peace of mind, along with all those quotes about my situation.
Casey Palmer5 Casey Palmer5 Regular
470 messages
joined Jan 2016
#537 ·
I totally forgot to mention—I could really use some comfort right now.
William Wells4 William Wells4 Newcomer
5 messages
joined May 2009
#538 ·
Dear, please take some comfort in knowing you aren't alone... It feels tragic to say "welcome" to this thread, because ideally, this group would have as few members as possible, but we are all here to lean on one another. Last night, I received the news that my sister's tumor has spread to her palate... despite undergoing ten different surgeries, they haven't touched the palate area yet... I am terrified it might move into the sinuses, but I'm trying not to let those thoughts consume me. Even through all of this, she is the one trying to comfort us.
So, please focus on being that pillar of strength for your loved one, and we will be right here to support you. Wishing you strength!
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#539 ·
Casey Palmer5 said:So, here I am again, back in your lives—or rather, back to my life being stuck on pause.

Goddammit.😢
Honestly, I just don't get it. What on earth is happening with all these young people ending up in comas?🤷
You’ve actually got a solid thread going over at the New Day Cancer Forum... There are plenty of good stories and some pretty rough ones in there, too, but honestly, you can learn a hell of a lot from them. Getting that kind of insight early on gives you a massive head start in staying one step ahead of the tumor.
Hang in there and let it all out—just don't do it in front of him!
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#540 ·
Casey Palmer5 As stated by:
So, here I am again... essentially living life on pause...

It is difficult to find the right words when someone is hurting, because, honestly, the only real comfort you can offer is being there for one another... You have goals and dreams—and please, don't fall into the trap of saying "we had plans"—so just hold onto the belief that you will reach them. Perhaps everything will be delayed or shifted around, but you will get there... strongly, and together...

Fate—or whatever else we choose to call it when we need a little comfort... My mother was admitted to the hospital for the very first time right on her birthday. Then, exactly six months later, just as my father was celebrating his, he woke up in the middle of a pre-heart attack episode and tried to tell her things were looking grim, only for her to snap back, "Why are you bothering me now? I know it's your birthday," before it finally dawned on her that he wasn't joking and they needed to get to the emergency room immediately. Whether that was destiny or something else entirely, I simply cannot say...

What I am trying to say is that you all possess such incredible energy and vitality, judging by the way you write—certainly more than most of us who bother to show up here... so, regardless of whatever "fate" might have in store, keep planning those next summits and pushing toward the top. Hang in there...

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