Support resources for families dealing with cancer and other serious illnesses

Melissa Kim45, please accept my deepest, most sincere condolences.
I am truly in awe of the incredible strength and courage you've shown during this time.

Hey everyone, my dear friends. 😘

Thank you all. I really don't want this post to be an exercise in sadness. My mom was blessed enough to have everything happen right here at home; I literally held her as she passed, though I can't say for certain if she knew what was happening. It all went by so incredibly fast.
I don't think she realized, and honestly, she didn't seem afraid. I just hope she’s holding steady and having a smooth journey.

She was already so weak yesterday evening, even dealing with a bit of vomiting. This morning, she took some Megostat and a little ProSure, but she wouldn't touch anything else besides a few sips of water. Her breathing was heavy, but it wasn't something you could even truly detect—I kept checking her, touching her, massaging her heart, lifting her arms above her head just to try and help her catch a breath, but it didn't matter. She just went out like a candle. She just slipped away. She was actually still alive while I was calling my brother to rush over, but she didn't stay to wait for him. We got her ready, and I called the woman who had been looking after her. Aside from my brother and me, she was the only one who had been there consistently for over a year now, and I think it was her wish to see her through. Then the coroner arrived, asking questions that I answered almost like a robot. They picked her up around two-thirty. Two men showed up, and one of them was the exact same guy who handled my dad's services eight years ago. I recognized him, and he actually remembered us too; even though it’s been quite a while, the situation back then was unusual enough to stick in your memory. We didn't dress her in black or anything formal; we just dressed her the way she would have wanted to look herself. I even applied a little balm to her lips, since she used to suffer from being so dry.

I'm home alone right now. I'm cycling through these waves of numbness and crying, but there's this underlying sense of peace. That body... that isn't my mother. I truly believe her soul seized the opportunity to leave as early as last night. "I am death, your mother, and I am introducing you to life." Lord. Her suffering is over now, and I just pray that God watches over her.

Please, fight like lions; never, ever give up. Death is such an easy thing, but it's us on this side who end up carrying all the heavy burdens.
May God protect you all, and your loved ones too.

Melissa Kim45 said:To all my dear friends... 😘

Thank you all. I truly don't want this post to be a somber affair... My mother was fortunate enough to have everything happen right at home, and I was actually there to hold her hand as she passed, though I can't say for certain if she realized what was occurring in those final moments. It all seemed to conclude quite swiftly...
I suspect she wasn't unaware, nor was she particularly afraid... I can only hope she stays the course and has a safe journey ahead...

She was already fading fast yesterday evening, struggling even to keep things down... a little vomiting here and there. By morning, she had managed a bit of Megostat and a tiny amount of ProSure, but that was about it; nothing else would stay down except for a few sips of water. Her breathing became labored, though it was hard to tell exactly how much she was struggling—I kept checking her, feeling for a pulse, massaging her heart, even lifting her arms above her head just to help her catch a breath, but it was no use... She simply went out like a candle. She just slipped away from us. She was still technically alive when I called my brother to rush over, but she didn't live long enough to see him walk through the door. We prepared her, and I reached out to the woman who had been looking after her. Aside from my brother and myself, she was the only one who had been around more consistently for the last year or so... I think it was her wish to be the one to see her off. When the coroner arrived, he asked questions that I answered like some sort of mindless automaton. They took her away around two-thirty in the morning. Two men showed up, and one of them was actually the same man who handled my father’s arrangements eight years ago. I recognized him immediately, and he remembered us too; even though quite a bit of time had passed, the circumstances back then were so unusual that they tend to stick in your memory... We didn't dress her in black; instead, we styled her exactly how she would have wanted to look herself. I even applied a bit of balm to her lips, since she had suffered so much...

I am currently home alone. I find myself cycling through bouts of numbness and weeping, yet there is this strange sense of peace... This body, however, does not feel like my mother's. It is as if her soul seized the opportunity just last night... I am death, I am your mother, and I am introducing you to life. Tagore... Her suffering has finally come to an end, and I can only hope that God watches over her now...

Please, fight like lions; never allow yourselves to surrender... Death is such an effortless thing, yet on this side, we carry burdens that are far more heavy...
May God watch over all of you, and your loved ones as well...

Dear Melissa Kim45,
You wrote that quite beautifully, and I truly admire the strength you've shown...

Please, continue being exactly who you are... kisses.

Melissa Kim45 said:......

🙂

Melissa Kim45 said:My mom fought such a long, hard battle. She was a winner in her own way, and a huge one at that.

She passed away this morning.

Thank you all so much, I love you guys. Please keep fighting for us too—stay brave and give it your all...

I'll check back in later with more details.

Dear Melissa Kim45, please accept my deepest condolences.

Melissa Kim45 said:My mom fought such a long, hard battle. She’s a winner in her own way, and a huge one at that...

She passed away this morning...

Thanks everyone, I love you all so much! Keep fighting the good fight for us, stay brave and give it everything you've got...

I'll touch base with more details later...

Melissa Kim45, please accept my sincerest condolences...

Melissa Kim45 said:My mother fought an incredibly long, hard battle. She was a winner in her own right—a true champion.

She passed away this morning.

I want to thank you all; I love you guys dearly. Please, keep fighting for us out there—stay brave and give it everything you've got.

I’ll check back in later with more details.

My deepest condolences.

Melissa Kim45 said:I just really hope she’s hanging in there and that her journey is peaceful...

Please, everyone, you've gotta fight like lions, don't you ever let them see you quit. Death is the easy way out, but we're the ones left here carrying all this heavy weight on our shoulders...
May God watch over all of you, and your families too.

Blaise, please accept my deepest, most sincere condolences!
Everything you've shared here on your own tells us everything we need to know about how much strength, love, and total devotion you had for your mom... honestly, I couldn't even find the words to say anything more powerful than that.
Hang in there!
🙂

Melissa Kim45 said:Death is the easy part, but it’s the weight we carry on this side of it that really crushes you.
May God watch over all of you and your loved ones.

Now that you've put it into words, I know it's the absolute truth, because it’s exactly what I've felt myself. Dying is the easiest thing in the world. It's everything between birth and death that actually hurts.
Don't be afraid of death!

Blaise, I am so incredibly sorry for your loss.

Blaise, dear, please accept my sincerest condolences. 🙂

Angela Wright said:Now that you’ve put it into words, I know it’s the truth, because it’s exactly what I’ve felt myself. Death is actually the easiest thing in the world. It’s the space between birth and death that hurts.
Don't be afraid of death!

The more my Pigeon’s health declines, the more I find myself dwelling on death... it isn't about being afraid of dying... it's about that endless, hollow sadness that settles in once someone you love is gone...

It’s just devastating to think about life without someone so close to you. My dad is supposed to be admitted to Mayo Clinic this Thursday to finally start chemotherapy, and honestly, this endless waiting period is absolutely destroying him.
Last night and again this morning, he just completely broke down. He started talking about the end—I can't even bring myself to use the actual word—and it was heartbreaking when he began speaking to my sister and me as if he won't be here tomorrow. This whole ordeal has been crushing his spirit and draining his physical strength all at once.
He’s becoming increasingly immobile because the issue involves his bones, and the delay has been just unbearable. We’ve spent three weeks waiting on pathology, then another week waiting for an oncologist from Indianapolis. Then, after getting everything sorted in New York City, we had to wait another month just to get tissue samples moved to Pathology, followed by visits to the specialist in Brooklyn, picking up results, seeing the doctor at Mayo Clinic, and now we're stuck waiting for him to actually be hospitalized.
We spend every waking moment trying to encourage him, telling him he has to fight and stay strong, even while we feel ourselves falling apart inside.
Everything everyone is going through right now is just so painful, and nobody deserves this kind of suffering. I keep looking back at his entire life, thinking about how much he has already endured, and now he has to face this too.
Right now, I feel like I just want to scream at the top of my lungs, but unfortunately, I'm stuck at work.

Medicare has decided to use paid newspaper advertisements to inform policyholders about their various coverage rights—a move confirmed by Medicare Director Václav Bergman. The first ad will outline how patients can get approval for high-cost specialty drugs; the second will detail the procedure for requesting medications not currently on the Medicare formulary; and the third will explain which patients qualify for medical treatment abroad and how to navigate that process.

“We’ll run the first ad in about ten days, followed by two more at two-week intervals, each taking up about a quarter of a page,” Bergman said, explaining why he and his senior staff chose this route. “Our attempt to inform the public about how to access certain medications ended in a rather ‘messy’ misunderstanding back in July—the infamous ‘Bublé incident.’ That was really the breaking point for us regarding how certain media outlets misinterpret patient rights.” He added, “I'm not saying our administration isn't slow sometimes—no bureaucracy is perfect—but I assure you we operate strictly by the book. Naturally, people aren't happy when they receive a denial, but our job is to steward the healthcare system's funds. We have to ensure that the money everyone contributes goes toward providing necessary services and medication to all patients, without exception. Instead, it seems those of us at Medicare are viewed as heartless villains, even though there have been instances where hospital requests for drugs simply never even reached our desks.” While these ads are funded by the premiums paid by insurance contributors, Dr. Bergman sees nothing wrong with the expenditure and isn't worried about public backlash, noting that opinions will undoubtedly be split. “Spending about thirty dollars per ad is a negligible cost to ensure accurate information reaches, I believe, half of the American population,” Bergman argued. He pointed to the issue with interferons: ever since they were added to the specialty drug list, they've been uncritically recommended to patients as life-saving miracles. In reality, interferons merely boost the immune system; they don't cure the underlying disease. Because doctors often prescribe them outside of official clinical guidelines, consumption of interferon spikes by 50 to 70 percent annually. When a physician refuses to prescribe it outside of those guidelines, they often tell the patient they can't get it because "Medicare won't allow it." But Medicare didn't invent the clinical guidelines; the medical experts did.

Regarding life-critical medications, such as cytostatics or treatments for rare diseases, patients should receive their medication within ten days, according to Bergman. He also noted that following a recent agreement with the Secretary of Health, Milinović, patients will no longer face outright denials for certain drugs. He explained that this applies specifically to cases that don't involve the most expensive specialty drugs from the Medicare fund. With approval from a hospital board, patients can still obtain medications prescribed outside of standard guidelines, as well as drugs not on the Medicare list that are covered by hospital budgets. "

Article adapted from The New York Times, 09.05.2008

The one thing I just can't wrap my head around is this: what actually happens when a hospital finds itself short on funds for an exceptionally expensive medication?

A friend of mine was just diagnosed with diffuse B-cell lymphoma. She was supposed to head in for her CT scan and her first round of chemo today, but the scan actually picked up some lung hemorrhaging instead. What does that even mean? Has anyone here dealt with this before? Any idea what her next steps should be? Please, if you know anything, let me know.

Blaise 🙂

We've hit that stage now. Even after some incredible results on her lungs—cancer is basically gone—and she handled the follow-up radiation on her head pretty well, my mom has decided to call it quits.
The doctors are saying it’s better if it happens at home.

We aren't going to tell her just yet—maybe we won't tell her at all. Though, honestly, I don't think we have much of a choice since she's so incredibly sharp and aware of everything.

Nothing else matters right now. We just want to be there, by her side, making sure her remaining time is as good as it can possibly be.

To be real, I’m struggling more because of my dad. This man has been working miracles for her since day one of the diagnosis—finding ways to make her smile even when happiness seemed impossible. It breaks my heart to see him; it kills me when he sits down, eyes welling up, saying, "maybe I should have done more..." I don't think I'll ever stop telling him that he did everything, and then some.

And like Blaise said— Death is easy, but we're the ones left carrying the heavy weight.
But we're holding it together, hanging in there. 🙂

I'm not going to spend my time mourning; the loved ones still here with me don't deserve that. Right now, I actually feel stronger than most people, and that’s the best thing I can offer.

quietpilot87 said:We’ve hit that stage now. Even after seeing some incredible results on her lung scans—like, the cancer was basically gone—and having a solid response to the follow-up radiation on her head, my mom still decided it was time to go.
The doctors are saying it’s better if it happens at home.

quietpilot87, did things really take such a sudden turn for the worse? 😢

Hey everyone!!!

Blaise, honey, I am so incredibly sorry for your loss.

I’ve been off the grid for a while—after all those massive complications, the hospital visits, and that whole "do we operate or not" drama. I actually just escaped to the coast for a bit to try and recharge my batteries and give this body of mine a break. The ocean, the timing... everything aligned perfectly (well, if I had actually planned it that way, maybe things wouldn't have turned out this way). I’m back in New York City now, feeling full of energy and good vibes, so naturally, I went straight for the medical tests. And what can I say? Terrible news. My tumor marker jumped by 2.5 times since the last check, and after talking to my oncologist, it’s official: the disease is active again. It’s not that it’s a huge shock, but it’s just so frustrating because I can’t go back on chemo (thanks to kidney issues) and I can't do radiation either since I've already hit my lifetime limit. Hmm, honestly, I'm not even that upset—I guess the more time passes, the less stressed I get about it all. Like slyseal28 says, it isn't really a fear of death, it's more just this heavy sadness and regret regarding the thought of saying goodbye to the people I love most. There's a whole mountain of testing ahead, and maybe, just maybe, another trip to Germany for immunotherapy... I'll keep you guys posted...
Sending you all nothing but love
Maybe a little sentimental, your Dina

Grace Fowler said:Hi everyone!!!

Blaise, honey, I am sending you my most sincere condolences.

I’ve been away from here for quite a while, mostly dealing with those intense complications—hospital stays, deciding whether or not to go through with surgery, you know how it goes. I finally managed to get away to the coast just to recharge my batteries and give this body of mine a chance to catch its breath. The ocean, the timing... everything aligned perfectly, though I suppose if I had actually tried to force it, things might not have worked out so beautifully. I made it back home to New York City feeling totally revitalized, full of good vibes, and naturally, I went straight to getting my follow-up tests done. Honestly, what can I say? The results were disappointing. My tumor marker has jumped by two and a half times since the last check, and after talking with my oncologist, it’s clear the disease is active again. It isn't necessarily a panic situation, but it feels heavy because I’m stuck in a bit of a corner—I can't do any more chemo due to kidney obstruction, and I can't do radiation because I’ve already reached my lifetime limit. To be honest, I’m not even incredibly shaken by it; strangely enough, the more time passes, the less stress I seem to feel. Like slyseal28 always says, it isn't really a fear of death itself, but rather this deep sense of melancholy and sadness regarding the possibility of saying goodbye to the people I love most. Ahead of me lies a whole marathon of testing and potentially heading back over to Germany for immunotherapy... I'll keep you all posted...
Sending you all my love
Perhaps a little sentimental today, your Dina

Grace, I am so incredibly sorry to hear about everything you're going through, but please, stay persistent.
I know it’s easy for people to offer empty platitudes, but we have to keep being brave and holding onto hope. We can't give up as long as there's a glimmer of light left.
Could you tell us a little more about the immunotherapy? Where did you go for it? How does the process work, and is it an option for all types of cancer?
I actually have a cousin living in Chicago, and she mentioned hearing about Dr. Nicolaus Klehr, though I think she said he practices in Austria.
Sorry, maybe you’ve already explained this, but my brain is just a fog lately and I can't remember where I read what I read.
Thanks