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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 91 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 …
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#621 ·
slyseal28 said:I wanted to tell you that if it truly had to be this way—it would have been better if he hadn't suffered for so long. I've spent days watching my love suffer, begging me to do something, to help him find peace. On one hand, I selfishly pray to God to keep him by my side just a little longer because I can't imagine life without him... but on the other hand, I pray for it all to end... because this isn't humane.

And I agree with you—let it all just go to hell.

Lately, I’ve been asking myself what I ever did to deserve this agony. 🤷
And why I didn't have the privilege of having everything wrapped up through a quick procedure. 🤷
Instead, I'm just torturing myself and my family like this.

I often think back to my boyfriend, whose brain tumor was diagnosed just two days before mine. He passed away three weeks later. He was only 24 or 25, I can't quite remember anymore, and he had a wife and a small child. It was devastating. 😢
Sometimes I wonder if he was actually relieved that it ended so quickly and that he didn't have to endure the prolonged struggle.

I'm right there with you—just let it all go to hell.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#622 ·
Casey Palmer5 said:Life is just a mess; precisely when you think everything has finally aligned, someone decides to hit you over the head with a sledgehammer... But I’m making it my mission to fulfill all our shared plans, because I know that is His will.

And God can go straight to hell.

Life is one massive injustice, a constant struggle that some people have to endure in the most brutal sense... but one must find the courage to follow through on what was planned, not necessarily because He wants it, but because you wanted it together.

There is no way to make up for what has been lost, yet there is a way to move forward with the same strength, if you believe that things simply had to be this way... He left you here alone to prove everything you are capable of, and when you meet again, you will be stronger for having endured it together.

God is unfair, truly... perhaps there are valid reasons, I suppose, though I couldn't tell you what they are.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#623 ·
feralridge3 said:Lately, I’ve been wondering what I did to deserve this ordeal... 🤷
and why I wasn't granted the privilege of having everything wrapped up through some sort of expedited process. 🤷
Instead, I'm just putting myself and my family through this endless grind.

I often think about a young man I knew—his brain tumor was diagnosed just two days before mine. Three weeks later, he was gone. He was only 24 or 25, I can't quite recall, and he had a wife and a small child. It was devastating. 😢
Sometimes, I find myself thinking that perhaps he was actually relieved it ended so quickly, spared from the prolonged suffering.

So, I’m with you on this one—to hell with all of it.

My mother circles that same question constantly, and sometimes I don't know how to answer her beyond telling her that maybe this had to be an experience for all of us, to realize that aside from the four of us under this roof, there is no other family. The hardest part is explaining to her that she isn't fighting for herself, but for us; not because we need her for some irrational reason, but because we need her as our guide, as the edge that cuts us through the thorns...

Occasionally, I wonder myself if I would have been happier if our struggle had reached a swift conclusion, or if I am truly fortunate that it continues even after two years. Then I remind myself that I cannot afford to be selfish, because she is suffering far more than I am, watching it all unfold from the sidelines.

No matter how exhausting it gets, as long as there is strength left to fight—keep fighting. Family is there to provide that strength and to believe alongside you, simply because that is what love demands.
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#624 ·
Casey Palmer5 said:Life is total garbage. Just when you think everything is finally falling into place, someone comes along and hits you over the head with a sledgehammer. But I’m making it my mission to fulfill all our shared plans because I know that He wants it that way.

And God can go straight to hell for all I care.

The only thing I can tell you is that I am incredibly sorry! And I won't sit here giving you that crap about how "it was meant to be" or any other nonsense, because this is just plain unfair! 😠

Something similar to what you wrote last was actually what my boyfriend said when his mother passed away suddenly a few years ago (not from cancer)... and even then, just like now, I didn't have anything smart or helpful to say about it. 😢

Hang in there, honey! 😘
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#625 ·
Brenda Scott31 said:I’m jumping into this thread for the very first time today. I wanted to share my mom’s story as an example—she went through two surgeries, chemo, and radiation, and now she’s been
doing great for over a year. But then I read those last few posts, and I honestly can't believe such a rapid, bad outcome for Casey Palmer5.
Before reading her latest update, I was absolutely certain things would turn out fine.
Casey Palmer5, I am so incredibly sorry.

Thank God someone is actually sharing a success story for once!!! 👍 I am sick to death of hearing nothing but bad news! 😘
So, what exactly happened with your mom? 🤷

Honestly, I find myself wondering if there are even any happy endings left in this group, because it seems like people only ever show up here when everything is falling apart...
Larry Watson5 Larry Watson5 Newcomer
1 message
joined Oct 2008
#626 ·
Back in 2003, my mother underwent surgery for a malignant breast tumor when she was 61 years old.
She had her procedure at Mount Sinai Hospital and subsequently went through rounds of chemotherapy and radiation. She handled the whole ordeal with such incredible bravery and strength.
Following that, all her medical results were positive; her markers were normal, and every test indicated that everything was looking fine.
For five years, things remained perfectly steady.
During her routine check-ups and screenings in the winter of 2008, all her findings were still good—we were just waiting on the abdominal scan CD to come back.
However, the CT scan revealed a tumor on her kidney, which was entirely separate from the initial breast tumor.
The surgery to remove it was successful, and the follow-up tests suggested that further therapy wouldn't be necessary.
Now, about 1.5 years later, all her results remain clear.
On top of all that, she struggles with blood sugar issues and high blood pressure, which has added an extra layer of complexity to managing her health and navigating these surgeries.
Casey Palmer5 Casey Palmer5 Regular
470 messages
joined Jan 2016
#627 ·
Guys, I went cave diving today. My crew set up some occupational therapy for me, and honestly? It felt better than any Normabell workout ever could...
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#628 ·
Casey Palmer5 said:Folks, I went diving in a cave today. My crew set up some occupational therapy for me, and honestly, I can say it beats any standard treatment out there...

I am truly glad to hear that!
William Wells4 William Wells4 Newcomer
5 messages
joined May 2009
#629 ·
Casey Palmer5, my heart goes out to you and your family. Hang in there!
William Wells4 William Wells4 Newcomer
5 messages
joined May 2009
#630 ·
My sister is doing slightly better... Three days after her surgery, she had some heavy bleeding because the wound became infected and everything just broke through—it actually spread into her sinuses and even under her eye. The doctors had to clean everything out, drain the area, and start her on a combination of antibiotics and an antifungal. She’s still in a massive amount of pain, looking quite blue and swollen, and finding it hard to even speak, but thank God there's no fever and the bleeding has finally stopped. They believe they’ve cleared out the infection successfully, so the next step is likely starting her on Methotrexate, though she'll have to wait a bit before they can move forward with her prosthetics.
Sending positive vibes to everyone!!!
cosmicorca cosmicorca Newcomer
2 messages
joined Jun 2009
#631 ·
I haven't really jumped into this thread until now, though I’ve had plenty of reasons to stay on the sidelines😵. A close friend of mine actually pointed me toward this discussion, especially seeing the brief struggle Casey Palmer has been going through with that "hateful enemy"—(Casey Palmer, sending you my most sincere thoughts right now...) so I've been quietly keeping an eye on things here over the last 10 days or so.
brisksurfer said:honestly, I find myself wondering all the time if there are still stories out there with happy endings, but it seems like people mostly show up here when things are hitting the fan...

brisksurfer, since you asked, here’s my own situation 😉.

About four years ago, I was diagnosed with testicular cancer that had spread to my abdominal lymph nodes. That led to two surgeries, followed by three rounds of chemotherapy using the BEP protocol (or whatever they call the BEC version)...
I pulled through everything successfully, and within six months of that diagnosis, I was already back at work.
Then, late last year—just because I didn't want to be bored, I guess—I went in to get a "suspicious" mole removed, one I've honestly had for as long as I can remember, and it turns out it was melanoma. That meant another surgery, a re-excision of the area, and a lymphadenectomy on both my left and right axilla.
All the results after that procedure came back negative, so I didn't need any further treatment, and just like before, I was back on the job a month later 😁.
I won't ramble on too much longer, I'll just leave you with that famous phrase I've been using quite a bit lately:"Both of them fell!" 🙂

Anyway, if anyone needs some advice regarding my "pair of carcinomas" 😬, feel free to reach out anytime.
James Martinez3 James Martinez3 Newcomer
4 messages
joined Feb 2013
#632 ·
Quote:

cosmicorca says:


Last year, just because I thought I might be bored, I went in to have a "suspicious" mole removed—a mole I’ve actually had since I can remember—and ended up getting diagnosed with melanoma. That led to another surgery, a re-excision of the site, and a lymphadenectomy of both my left and right axilla.
All the results after that surgery came back negative, so they told me I didn't need any further therapy, and within a month, I was already back at work.😁.
I won't drone on any longer, but I'll just leave you with that famous phrase I've been using quite a bit lately:"Both are down!" 🙂

If you don't mind me asking (you can also just send me a DM)

1. What was your PhD classification according to Clark and Breslow?
2. Where and by whom were you operated on?

I don't mean to scare you or dampen your optimism, but I truly believe you have to be incredibly cautious when dealing with melanoma. Doctors might tell you everything is fine and that you don't need more treatment simply because they don't have anything else to offer you here. The only time they are somewhat justified in taking that stance is with melanoma in situ.

I'm not sure if you've read my older posts, but seven years ago, my husband had a mole removed, followed by an extensive local re-excision and an inguinal lymphadenectomy. His results were okay, and we were told everything was fine and no additional therapy was needed. Today, he is in Stage IV, most likely with metastases in his lungs. He's only 26, by the way.

If the doctors had told us the truth seven years ago—that he essentially had a 50/50 chance for long-term survival, or that we could attempt postoperative and preventative interferon treatment at our own expense—and if I had known then what I know now about the role of immunity, nutrition, and lifestyle, perhaps we wouldn't be where we are today.

Maybe I'm wrong, but it feels to me like you might be taking this whole melanoma situation a bit too lightly—just like we did. I really hope I'm mistaken and that you have all the necessary information regarding the implications that come with this diagnosis.
mistyridge5 mistyridge5 Member
25 messages
joined Jan 2012
#633 ·
Casey Palmer5,

I'm just so glad to hear that helped!!!! 👍

Beliand,

Honestly, let them BOTH FALL!!! 👍😉
I suppose DS shared some really solid advice based on what they've been through.
I don't know much about melanoma, truth be told—so I'll just wish that everything stays exactly this way, that you feel good and stay healthy...

It’s such an inexplicable feeling, isn't it? This deep desire we have to hold onto our loved ones, even when another part of us knows better, because we are all so aware... 😢

Sending a big, strong hug to everyone!!!
cosmicorca cosmicorca Newcomer
2 messages
joined Jun 2009
#634 ·
Elizabeth Gonzalez55 said:If I may ask... (you can always just hit me up in a DM if that's easier)...

It was the PhD classification based on Clark / Breslow that we were looking at...
2. So, where exactly was the surgery done and who was the surgeon...

Why not... 😉:
Clark/Breslow classification: 1 b...
I had my surgery over at KB Dubrava with Dr. Vlajčić...
Dr. Šitum, the dermatologist over at St. Margaret's Hospital...

Elizabeth Gonzalez55 said:I don't mean to scare you or rain on your parade, I really don't... but when it comes to melanoma, you’ve got to be incredibly careful. It’s easy for doctors here to just tell you everything is fine and that you don't need further treatment, mostly because they simply don't have much more they can offer you in this system... though, I guess when it's melanoma in situ, they might actually have a point in how they approach it...

Thanks for the reply. I know exactly what’s going on here, and honestly, I was just thinking about my last post and how I didn't really lay it all out quite right... It probably looks like I'm being way too optimistic, but I've actually done my homework. I've been talking to people through some old connections—friends who have gone through something similar and even some buddies who are doctors—and they've made it clear that I need to be incredibly careful. That's why I'm sticking strictly to my checkups every three months, plus the mandatory sun protection, wearing UPF gear, and all that...

Elizabeth Gonzalez55 said:I'm not sure if you've had a chance to catch my older posts... about seven years ago, my husband had a mole removed, and they ended up doing this extensive local re-excision and an inguinal lymphadenectomy. Everything looked fine back then, and the doctors told him he was all clear and didn't need any more treatment. But now, he’s at Stage IV, most likely with metastases in his lungs... and he's only 26, by the way...

I haven't yet, but I will... I am just so incredibly sorry to hear about everything your husband is going through right now... 😢.

Elizabeth Gonzalez55 said:If only my doctors had told me seven years ago... truth...So, they basically told me there's a 50/50 shot at long-term survival... and that we could potentially try using interferon as a preventative measure after the surgery is over... It’s all on us, honestly... if I had actually understood what I know now about how much immunity, diet, and overall lifestyle matter back then, maybe we wouldn't be standing in this exact spot today...

I’ve already overhauled my diet and way of life since my first bout with cancer, so facing this melanoma just feels like a confirmation that I’m sticking to the path I started on four years ago...
I’ve heard things about preventative interferon, but man, the cost that comes straight out of our own pockets is just... 😠.
Elizabeth Gonzalez55 said:Maybe I'm misreading things, but it feels like you might be taking this whole melanoma situation a bit too lightly—just like we did. I really hope I'm wrong and that you actually have all the info you need regarding everything this diagnosis truly implies...

I actually have a ton of information, and not just from our doctors here, but from some specialists abroad too, so I'm hoping that's enough for me... at least for right now. But you can never have too much info, so please, "shoot" if you think I'm missing something😉.

Anyway, thanks for sharing the info, because you can never be too careful, and just being able to swap notes like this can be so incredibly helpful sometimes...

Wishing you and your husband nothing but the best in your shared fight against this hateful enemy🙂.
Walter Grant33 Walter Grant33 Newcomer
3 messages
joined Apr 2010
#635 ·
Elizabeth Gonzalez55 said:If you don't mind me asking (feel free to just DM me)

1. What was the Clark / Breslow PhD classification used before
2. Where and who performed the surgery?

Look, I’m not trying to scare you or kill your vibe—but honestly, when it comes to melanoma, you have to be incredibly careful. Doctors here will tell you everything is fine and that you don't need more treatment just because they don't have anything better to offer you. The only time they're actually right to act like that is with melanoma in situ.

I don't know if you saw my older posts, but seven years ago, my husband had a mole removed. They did an extensive local excision and an inguinal lymph node dissection. Everything looked fine, and they told us he was good to go—no extra treatment needed. Fast forward to today: he's Stage IV, probably with lung metastases. He's only 26, by the way.

If the doctors had just told us the truth back then—that he basically had a 50/50 shot at long-term survival—things would be different. If they'd told us we could try postoperative preventive interferon covered by our insurance, or if I actually understood what I know now about immunity, diet, and lifestyle, maybe we wouldn't be in this position right now.

Maybe I'm wrong, but it feels like you're taking this whole melanoma thing a bit too lightly—just like we did. I really hope I'm wrong and that you actually have all the facts about what this diagnosis really implies.

In an earlier post, you mentioned that due to circumstances and since your husband wants it that way, you guys are sticking strictly to alternative methods. Does that include MMS?
brisksurfer brisksurfer Newcomer
6 messages
joined Jun 2009
#636 ·
Casey Palmer5 said:Listen, folks, I went diving in a cave today. My crew set up some occupational therapy for me, and honestly? It beats any standard protocol out there.

Way to go, dear! 😘
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#637 ·
Casey Palmer5 said:Guys, I went cave diving today. My crew set up some occupational therapy for me, and honestly, it felt better than any Normabels could ever manage.

Kudos to the crew. 👍
I really think that’s the best kind of support they could have organized for you.

For me, those few easy hiking trips I've taken since my tumor diagnosis meant more than any medication or psychiatrist ever could.
Once I get out into the woods and up into the mountains, there isn't anything left in this world that can ruin my mood. 😉
William Wells4 William Wells4 Newcomer
5 messages
joined May 2009
#638 ·
Just when you think things are finally starting to look up, life throws a curveball at her. It turns out they left a tiny fragment of bone behind that’s been causing nothing but trouble through her gums, and now they have to go back in and reopen everything just to clean it out properly. Honestly, who can you even turn to when this happens? All we can do is keep our heads up and pray to God.
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#639 ·
cosmicorca said:I haven't really posted in this thread until now, though I've had plenty of reasons to😵. A friend happened to bring this topic to my attention—specifically regarding Casey Palmer's brief battle with that "vicious enemy" (Casey Palmer, sending you my sincerest condolences once again), so I've been following along quite closely over the last ten days or so.

Well, it wasn't exactly an accident. 😉
I knew you’d be more than willing to share your experience to help others out.

cosmicorca said:I won't ramble on any longer; I'll just leave you with that famous phrase I've been using quite a bit lately:"They both fell!" 🙂

🙂
James Martinez3 James Martinez3 Newcomer
4 messages
joined Feb 2013
#640 ·
Walter Grant33 said:In an earlier post, you mentioned that, due to circumstances and because of what your husband wants, you're sticking strictly to alternative methods. Would MMS fall under that umbrella?

No. We are talking exclusively about a macrobiotic approach—things like diet, meditation, exercise, reflexology, and so on—which has been the foundation of his treatment all along. The only thing changing, based on his own wishes, is that he isn't doing any more tests or seeing doctors at all. And there's just no interest in clinical studies either.

If MMS happens to be compatible with that kind of philosophy, then maybe we could consider it..

🤷

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