It’s been nearly three years now. Time moves so incredibly fast, yet the pain feels just as raw as if it happened yesterday. I rarely find myself opening this thread, but here I am... I just felt the need to say something.
Eric Newman75 - that post of yours should have been the very first one on this thread. It was so positive and encouraging; you really deserve a huge 🙂 . Dana Martin87 - I am so deeply sorry about your father. I remember you because we were posting at the same time, and I recall you mentioning he was doing well. So, seeing your post today—from a total stranger, really—it caught me off guard and truly saddened me. My heart goes out to everyone else following this thread too.
My father is gone; we fought through a situation that felt completely hopeless. To put it briefly, it was lung adenocarcinoma that went undetected until it was too late, with metastases in the adrenal glands, the brain, and the lungs... We fought with everything we had, but the chemotherapy eventually wore him down, and our healthcare system didn't make things any easier—though, honestly, I don't wish that experience on anyone. In the end, I found myself having to manage his medication adjustments myself and arranging proper care. I had to secure a place where we could be by his side 24/7, which meant dealing with being discharged from the ER in terrible condition in the middle of the night. I spent my days hunting down every alternative treatment, buying nausea medications and painkillers, reading every medical paper I could find, and gathering advice from people on this very forum. Ultimately, I was left haunted by the question of whether I could have done even more. Later on, a wonderful woman at the pharmacy where I was picking up his supplies told my mother that she had never seen anyone fight as hard as her daughters did (it seemed like we were practically living there, given how often I was in 🙂). I broke down right then and there, because I still struggle with the feeling that it was never quite enough. Then again, I know people who fight until their very last breath, and that includes the incredible people on this forum who served as my inspiration and my strength. I truly, from the bottom of my heart, wish you all victories in your battles, and I hope you come through them as whole as possible.
Morgan Edwards4, they're pretty much the same everywhere, so don't let it get to you. Not everyone, of course, but the vast majority follow the same pattern. I actually had someone tell me once that I was being "brutal," and I just looked them right in the eye and told them that our healthcare system is far more brutal than I could ever be, or even the disease itself. Jane is absolutely right, and given her wealth of experience, I’d say listen closely: be persistent. Call them, ask questions, and make it your mission to understand both your rights and the specifics of the illness. We all hit that wall eventually—that moment where you feel completely helpless, hopeless, and stuck wondering if there was something more you should have done. Just keep pushing... honestly, being relentless is the best advice I can give you in this situation. If you have the chance, try to reach out privately to dig deeper into the specifics of the situation and see what actual steps you can take.
ruggedfox11... I am just so incredibly sorry. I’ve been following your fight closely, and please know that you aren't alone in this struggle. Your situation felt so much like what we went through ourselves. We fought with everything we had until the very end, truly, heart and soul. You did absolutely everything within your power—you were smart, you were brave, and you kept your head clear even when things got incredibly difficult. Hang in there.
Robin Diaz4 said:Or rather—would things have been better if he hadn't agreed to chemotherapy?
I understand what you mean. Honestly, I’m convinced it would have been better, but at the end of the day, it was his decision to make. The pain hasn't left me; it hurts so much that yesterday, looking at his photos, I felt physically ill. Why, oh why... There are moments when I would give almost anything just to go back to those few days when he felt okay—it's like that movie *Groundhog Day*. It’s exactly what Terry Lopez18 said—I would have wanted him even through the illness. There are times when I feel like I could just take all his suffering and agony upon myself, though I feel ashamed even saying that out loud. When he passed, a part of me went with him. What can I say? That's just the bond between fathers and daughters. I haven't found any real solace. They say time heals all wounds, but it doesn't feel easier, and I have to admit, I'm not looking for relief, nor am I letting myself find it.
And yes, I still check this thread from time to time and keep my fingers crossed for everyone. Right now, ruggedfox11, I am sending all my best wishes and luck your way.
Drew Ward7, there's a very real possibility that the issue has spread toward the brain. It was much the same with my father... we had to administer his anti-nausea medication intravenously or via intramuscular injection. When he took them orally, he absolutely had to take a stomach protector alongside them because, on top of the pressure in his head, he was also dealing with gastritis. There are several pharmacies around town where you can pick up whatever you need without any hassle. Just keep in mind that if you order something specific through a pharmacy, it unfortunately takes a few days to arrive. The bigger hurdle is that a specialist needs to officially prescribe the therapy before they'll administer injections.
I’m not sure what stage of treatment he’s currently in, but it is quite possible he might need cranial radiation. If you call 911, they will likely just give him Reglan, which is f***ing useless for nausea of this nature—it won't do a thing if the issue is centered in the brain. You should go straight to the ER; they can run imaging on his head, and if there is swelling, they can administer dexamethasone, which will help reduce the pressure from the lesions and alleviate the nausea. Send me a private message if you need any help at all...
wearyskipper20, I’m sending you a private message with the contact number for the palliative care unit in Chicago—specifically Nurse Hoić. They have the authority to authorize medications just like a GP would, provided you can show them the referral or the prescription from the anesthesiologist who handled that initial dose.
It’s vital to shift the focus away from yourself. Growing up, my mother was constantly lamenting her own situation and how much she was suffering, while my father, on the other hand, remained incredibly bright, optimistic, and possessed that unshakable courage he always had. Because of that contrast, I felt this innate necessity to be the strong one for him. He was always my rock, and I can't help but wonder who I would have become if I hadn't been there to lean on when he needed me most. Of course, I wasn't made of stone. There were moments where I completely fell apart in private; the stress would manifest physically, making me feel genuinely ill. I spent countless sleepless nights wondering just how much a person can actually endure before breaking, yet somehow, I always found the strength to get back up. I was constantly hovering—making sure his therapy appointments were scheduled, ensuring he ate something, checking he was hydrated, helping him change, racing between doctors' offices and keeping up with my job... Honestly, during that final stretch, I didn't see my own child for nearly two months. Looking back, I think I might do things differently if I could start over, though with a diagnosis like his, I often wonder how much difference my approach would even make. Regardless, I know I would face it with that same sense of hope and positivity.
Jessica Kelly4, I think you’re overstating things here.
Shouldn't religious studies in our schools actually be about learning about different faiths and belief systems from an unbiased perspective? The goal should be to help kids develop critical thinking skills—to encourage them to question the world around them and truly think for themselves. Why does that equate to Christian indoctrination? This whole argument that these classes exist just to teach children "morality" or "goodness"... honestly, please. It feels more like teaching them how to be compliant followers under the guise of a faith that claims to only promote virtue. The curriculum taught in public schools ought to be entirely distinct from what they teach in a church basement.
True, things work differently everywhere you go. The saddest part of this whole ordeal is realizing that your only sense of relief comes when doctors actually do their jobs effectively and a person isn't left in constant agony. We have poured so much effort into fighting through the healthcare system, spending countless hours navigating it since we first arrived at the Mayo Clinic about ten days ago, all while constantly scouting for supplemental options in the background. It breaks my heart that there isn't an easier way to get him scanned privately; instead, we feel completely at the mercy of the institutional system. Unfortunately, I have to admit that everyone has told us the exact same thing—whether it was private specialists, family friends, or the hospital staff. At least they are being consistent, even if we refuse to give up. I would take him anywhere in the world if I could, but he wouldn't agree to it earlier. He kept waiting for the chemo, and it eventually took such a toll on him that he simply couldn't get out of bed anymore. Everything happened far too quickly. At least three different doctors mentioned that tumors don't typically spread to the brain that rapidly, but honestly, those medical explanations don't mean much to me right now. I truly believe it's better to be without certain things in life than to be without happiness. Of course, I’ve been picking up all sorts of alternative remedies, and they were actually working wonders until the chemo wore him down and those brain metastases resurfaced. Right now, he can't handle any solid food or liquids, so I am buying everything in liquid vial form. I might still try Aloxi, though—thank you, Rachel Wood27, for that information. I have truly found myself reading through the discussions on microcellular assemblies with everyone here, feeling both moments of hope and deep sorrow.
I remember what you shared about your dad—how he actually did a little victory dance in the air after tossing those stakes, if I recall correctly. Seeing him like that after two months gave me so much hope. It’s become my personal litmus test; whenever I meet a doctor, I find myself wondering if they’re the kind of person who would truly go above and beyond for their own family. Unfortunately, they won't be able to use the radiation because he’s just too weak. I can see it happening right before my eyes. Just a month and a half ago, they couldn't even get him stabilized, and I think in my sheer desperation to help him, I've been trying to manage everything on my own. Now, it’s the nausea that’s really taking its toll. I haven't been able to get it under control yesterday or today. To make matters worse, while he didn't have any pain at all yesterday, today he's been dealing with it for about ten minutes. Neither Zofran nor Reglan seem to be doing the trick, and it feels completely absurd that Zofran and Setronan haven't even been in stock at the pharmacy for a week now. I'm currently trying Ranitidine ampoules since Peptoran 100 was the last thing that seemed to help, but I'm not sure it's making an impact. I'm torn about whether to give him Medrol; his head isn't hurting, but I'm terrified that increasing the dosage might just make the nausea even worse, creating this endless cycle. It's just incredibly difficult, honestly. What hurts the most is this overwhelming feeling that I can't—or simply don't know how to—fully ease his suffering.
Thank you. That was actually my plan—to record the calls—and honestly, I find myself automatically recording every single call on my phone now. I was hoping there might be another palliative care team out there so I wouldn't have to spend hours digging through the internet just to find someone to call. I feel terrible that I wasn't there the last time the paramedics showed up so I could give them a piece of my mind, but I had to work. It’s exhausting. You pay into Medicare for forty years, and then they still have the audacity to treat patients however they please. Every once in a while, I find myself having to raise my voice at a doctor or a nurse just to get them to finally do their jobs properly. It’s such a massive, unnecessary drain on my energy. It’s especially disheartening when a specialist in the final stages simply writes down a treatment plan based on what *I* suggest would be best, just to get through it. It’s absolutely maddening; the whole system is broken. Making difficult decisions isn't an issue for me, but this has truly crossed a line. I’ve read almost every single post in this thread, and somewhere you mentioned that when you're fighting against the healthcare system, you can face just about anything. That is profoundly true. At this point, I really don't care about anyone else's feelings, nor do I feel any particular respect toward them; I will remain polite if—and only if—they do the same. My primary focus right now is taking care of my family, but I am definitely planning to send an email to the Ministry. I haven't quite figured out the best way or where to direct it yet, and it probably won't change a thing, but silence is consent, and I refuse to be silent.
I’ve reached out to the palliative care team, but they won't be able to swing by to see him until Monday. It honestly feels a bit tragicomic at this point—trying to manage everything while waiting for the professionals. In the meantime, what should I do if we run into trouble with pain management or nausea over the weekend? Last time we called Emergency Services, they were incredibly slow to show up. He’s struggling to breathe right now, so he's currently on oxygen. There has to be something else we can do to make him more comfortable. Besides, of course, reaching out to the chaplain for guidance, who else can I call?
Unfortunately, we haven't had a very good experience at the Institute. Perhaps they didn't tell him there was no hope, but they certainly told my mom and me that they would try this and that. They followed the protocol, but only because we kept insisting, asking questions, and pushing things along. On the day he was supposed to start chemo, they told him they needed clearance from a cardiologist, even though they had been holding onto his paperwork for four months already. He was stubborn about it, though, so he managed to get that expedited. The plan was 30 Gy of radiation over 10 days; every oncologist we spoke to (including two private ones) said that dosage was standard for the head. I even looked it up online and confirmed it’s the standard protocol. It just seems everyone has such wildly different experiences. Now, the radiation oncologist is telling me he’s afraid of over-radiating him, so he’s stuck on Dex, which has absolutely wrecked him (and I suspect it either caused or accelerated what he’s going through right now). I ended up switching him back to Medrol early after consulting with Lom, who confirmed my instincts were right. As for his oncologist—honestly, I have no idea who he actually is anymore. I’ve spoken with about four different oncologists throughout his treatment.
He was on 40 mg of Medrol when he took a turn for the worse. We rushed him to the ER at the Mayo Clinic and arranged for him to be seen at the Institute the next day. The ER staff discharged him around midnight without stabilizing him at all, claiming there was nothing they could do for him. Then, the Institute refused to admit him, arguing it made no sense to proceed with radiation after five months of waiting, especially given how terrible his condition had become. So, step by step, by being relentless and constantly digging through medical info online, I figured out what had to be done. I finally managed to stabilize his head issues, but now he’s struggling with breathing. And once again, everyone tells me, "That's just how it is, and now he's going to die." I told every single one of them, doctors included, that nobody knows what life throws at you—you could get hit by a car, a ventilator could fail, someone could meet their end in the dark. We simply cannot dictate when someone dies. I actually intimidated the radiation therapist with my determination; he even called me "brutal." Well, damn him.
He is weak, and he crashed rapidly after the chemo. I am genuinely terrified of the idea of him undergoing more radiation, even if he manages to get to that point. It is an option, certainly, but he’s barely eating anything, and frankly, it doesn't even seem to bother him mentally anymore. As soon as the head issues subsided, the trouble moved to his chest. Now, perhaps that’s exactly what needs radiation. Once again, I’m the one searching for solutions, arguing, and badgering people. Time is running out, though it feels like he never had much to begin with. We’ve pushed everything forward as fast as humanly possible.
Regarding how he handles the Medrol, he’s doing okay. It made his face puffy, but his mood was fine until a week or two ago. My only thought is that the Medrol further weakened him, and the Dex just brought on even worse side effects. Now, he’s refusing everything—won't eat, won't do anything. He’s just disillusioned with everything. He truly believed the doctors would help him; unfortunately, I never shared that optimism, and it seems my intuition was right.
An experience like this truly changes a person. I am profoundly sad. But once I wipe away the tears, I know this is a path we all must walk eventually, and there isn't anything that can save anyone. I have to do what is right and do everything I can, because I know he would do the same for me. I’ll stand even firmer. There is no giving up. I always see things through to the very end.
Unfortunately, we haven't had any luck at all with the doctors, or really with anything else, either. We’ve had to fight for every single thing alongside John. Right now, the emergency services told us they’ll get here whenever they can arrive, and honestly, it feels like there's absolutely nothing that can be done.
Regarding the repeat radiation, it’s been six and a half months since his last session (they told me he received the maximum dose), and for now, they are just trying to manage his condition with steroids. To be honest, we’ve had some success mostly because I am constantly scouring the internet and managing his therapy myself—adjusting, pausing, adding things, you name it. We have a new appointment scheduled with the radiation oncologist this Thursday, but Dad has already reached the point where he isn't eating anything, and he’s struggling with metastasis in his chest. His heart rate is a bit elevated but remains steady at 95, and his blood pressure is normal.
He was diagnosed with nine brain metastases because, previously, not a single specialist saw anything in his chest despite him having symptoms. He’s been dealing with those brain metastases and being off the dura for nearly ten months now. He wouldn't even see the doctor until things became truly dire.
Rachel Wood27, I actually read parts of your story on another forum. Every single outcome turned out to be devastating. I’m not sure how things finally ended for Megin's father, which I am genuinely curious about, as she seems to be the only one who had a positive conclusion; I spent quite a while reading through all 42 pages of that thread.
As for chemotherapy, he isn't up for it right now. The last round took such a toll on him that he’s been immobile for a month and a half. They also thought they could tackle the two remaining metastases with chemo after the radiation, but that turned out to be a complete failure, as the brain metastases flared right back up after the treatment. So, yeah... it's just a mess.
And when it comes to symptom management... no one has really stayed on top of things. From the very beginning, he was essentially a dead man walking. Mom says the emergency responders were "helpful"—if you count waiting an hour after calling them as helpful.
Edit: And here goes Mom again... asking why they even bothered calling in the first place. That’s not what this is for; this is the terminal phase. Why call the healthcare system that he’s paid into for forty years just to let someone die? Right in front of him, they just comment that things are going to keep getting worse every day. There is no fluid in his lungs, and for his shortness of breath, they suggested he just drink some maple syrup.
It’s not a cure, but certainly good information to have on hand. The issues in his chest have started to really bother him lately. He’s dealing with a racing heart, shortness of breath, and he keeps losing his voice. His shoulders are aching too, just like they did at the very beginning when they were insisting there was nothing wrong with his chest. Since he has a history of heart issues, the ER staff advised him to take a beta-blocker and some additional Norvasc. While his heart rate has slowed down a bit, he’s still struggling to catch his breath, and now even his digestion is acting up. I finally managed to get him to take some Glucerna. They’ve put him on oxygen, but honestly, it hasn't done much to help with the breathing difficulties. It's hard to wrap my head around—his oxygen saturation is sitting at 96% every day, yet he's fighting lung cancer. Watching these highs and lows over the last month and a half... it's been absolutely jarring.
Between the anesthesiologist who managed his therapy, two LOM specialists, the radiation oncologist who adjusted his treatment plan, and two different oncologists—not to mention that entire dedicated nursing staff—it seems nobody ever thought of such a straightforward solution: Peptoran. I have to admit, I’m feeling pretty frustrated that everyone keeps focusing solely on the primary disease. It wasn't until today, when a nurse mentioned that Peptoran 100 is actually more potent than the Acipan 40 he’s currently taking, that it finally clicked for me. He likely just needs a higher dose of those steroids to get ahead of this. Goddamnit. He’s doing better than ever regarding his mental state and the nausea, but it's clear we're facing a new hurdle now... his ribs.
This whole situation is truly an exercise in sanity. One of the male nurses mentioned something—he’s a wonderful man, and I genuinely feel for him, but honestly, some people just live far too long. At this point, I find myself wishing my own father had been just as difficult. Anyway, they changed his therapy to dexamethasone. The radiation oncologist mentioned they are experimenting, but that it’s too early to restart radiation. Okay, I get it. He isn't telling me anything more than what I already know, which makes this even more heartbreaking. Beyond that, he doesn't seem to recognize many medications anymore, so I can't really ask for his opinion. His head isn't hurting terribly—just some pressure—but the nausea is absolutely unbearable. The doctor is surprised he isn't in more pain, wondering if perhaps the nausea is due to the Matrifen 25. Well, I’ve been through this before, and it isn't the Matrifen. There are days when he hasn't had any Matrifen and the headache vanishes, yet the nausea remains constant. This morning, after four days on the dex, the nausea hit him even harder, along with insomnia. I ended up taking him back to the clinic myself to put him on a Medrol IV because he had almost completely stopped eating and drinking. Zofran combined with Reglan isn't doing a thing. We have a follow-up in three days. I suspect he can't handle the steroids much longer (he's getting them via injection now instead of orally). I am at a total loss as to what else might help settle his stomach. On a brighter note, his vital signs are incredibly stable. Even his blood sugar is fine, despite him being diabetic. His digestion and urinary output are normal, too. If it weren't for this illness, he would be the picture of health. Does anyone else have any ideas on how to manage this level of nausea?