Support for families dealing with cancer and other serious illnesses (Part II)

Susan Barnes82 said:I’m writing this while my 67-year-old dad sits there with his eyes closed, rocking back and forth in his chair. I am losing hope. For about six days now, he hasn't really known where he is; he cries like a small child, wailing and clutching at the furniture just to stay upright. Nights are the absolute worst. He takes Normabel 5 mg before bed, but it clearly isn't doing the trick. We're looking at the end of a three-year battle with inoperable liver adenocarcinoma—it's spread to his lungs, bones, and brain. When he is conscious, speaking is a struggle because his tongue is so swollen. How can I make this easier for him? Is there anything I can even do?

He needs high-quality palliative care immediately. That means getting a properly titrated dose of pain medication from a pain management clinic and starting whatever supportive therapies he needs. Call his doctor right away and demand home health services to assess his condition and set up daily nursing visits, which he is entitled to under Medicare. Don't take "no" for an answer; they are required to provide this. If they push back, report them to Medicare via their whistleblower hotline immediately. You can find those contact details on their website.
Reach out to the Hospice Friends Association. As an organization, they have palliative medical volunteer teams that provide advice and support through home visits. You can find their info on their site.
This is going to be incredibly hard on you, and please understand that he requires 24-hour care. One person simply cannot do this alone; you need at least two people working in shifts. If you aren't in a position to provide that level of intensive medical support at home, you should seriously consider inpatient hospice facilities, especially since Dad isn't fully himself right now. He is in the terminal phase, and the priority has to be ensuring he has everything he needs for whatever dignity and quality of life he has left.

Thanks, Angela Wright, for all the effort you put into looking out for us and sharing what you know.
We had the home health nurse come by for his dexamethasone and ranitidine injections—but the IV fluids are a real issue right now because of the edema. They can't get the Braunid in, and his blood pressure is through the roof; it hit 200 systolic today. We're giving him one dose of Fursemid, though I'm honestly not sure if we're even allowed to increase the dosage.
I suppose the hardest part is that he’s occasionally conscious enough to realize what’s actually happening...

Angela Wright said:The mods asked me to start this second part of the thread—since the first one hit the 10,000 post limit set by the admins. Everything stays right where it is, and you can still read all the old posts; we’re just moving the conversation here.

Here are the links to the first and last pages of the old thread.

Let me take one more quick look back at the original thread.

When I first started this, I was in an incredibly difficult spot in my life—more out of pure desperation than any actual need for answers, I guess. I was driven by that idea that if you give something to someone else, it comes back to you tenfold, so I hoped God would help me through my situation. And honestly, He did. This thread ended up bringing a lot of good things into my life personally. Unfortunately, some of those big things turned into massive disappointments, but I never wanted to stop writing here. It’s become a habit, I suppose, and I still believe that if I help others, God will help me—but it has also become my way of finding some sort of higher purpose in all the horror my mother and I went through together.

501 pages, 10,014 posts, 1,338,026 views. Those numbers represent so much sadness, despair, and agony—but also plenty of positive realizations, comfort, and peace. When I started this, I had no clue what these numbers would eventually mean, or how many fundamentally devastating life situations they actually hide. Today, after seven years on this thread, I’ve gathered a mountain of experience, knowledge, and insight. One thing I've learned is that if we don't pass our knowledge along—even when our own situation ends well or poorly—there won't be any real progress, and these numbers will just keep growing because the world is getting older and sicker.
In that sense, I’m asking everyone who writes here: please come back and check in once you've dealt with your own issue, and help someone else solve theirs. You don't have to be a fanatic like me, but think of it as a beautiful way to offer an oblation for the suffering of your loved ones or your own struggles. For those who lost their battles, it honors their souls; for those who overcame them, do it out of gratitude. Personally, it gives me a damn good feeling—one I’d recommend to anyone. 😉

See you in the threads.🙂

Thanks, everyone.

Fursemid isn't doing anything—his blood pressure is spiking, and he can't even swallow anymore. Does anyone know what else could be given to bring down a reading of 200/116?

Susan Barnes82 said:Fursemid isn't doing anything, his blood pressure is spiking, and he can't even swallow anymore. What else can be given to bring down a reading of 200/116?

Don't try to handle this yourself. Call 911 immediately; they need to stabilize him. My guess is some kind of mass is putting pressure on things, which would explain why the pressure is climbing.
Get him to the hospital right now!

One day, when this whole agony finally settles down, I’ll write about how my dad—facing inoperable adenocarcinoma with a one-year prognosis at most—actually managed to squeeze out three incredible years just by changing his diet. Right now, though, he's going through hell. He's had two emergency room visits already. The staff is wonderful, really, but the 35/mcg patch isn't doing a thing. He’s developed oral candidiasis, he's completely swollen up, and he's still fighting—he wants to walk on his own, but he just can't.
It’s true that almost nobody can understand what this looks like unless they've lived through it themselves—I’m only just beginning to realize that.
I wonder how long it will take me to get used to all these grim sights and start focusing on the good memories instead, but that’s a conversation for another time.
I just wanted to say that sharing information matters; maybe our story might someday help someone beat their own prognosis.
Unfortunately, they told us jaundice hasn't set in yet, so we're basically just waiting for the worst of the suffering to begin.

Susan Barnes82 said:One day, when this whole agony finally ends, I’ll write about how my dad—facing inoperable adenocarcinoma with a prognosis of maybe a year at most—actually managed to claw back three quality years just by changing his diet. Right now, he’s going through hell. He’s had two ER visits, and honestly, they’ve been wonderful. But the 35/mcg patch isn't doing a thing, he’s developed oral thrush, he’s completely swollen up, and despite all that, he’s still fighting, trying to walk on his own when he simply can't.
I'm starting to realize that unless you're living this, you truly have no idea what it looks like.
I wonder how long it will take me to get used to these grim sights and eventually be able to pull the beautiful memories to the surface, but that’s a conversation for another time.
I just wanted to say that information is vital, and maybe our story will one day help someone beat their own prognosis.
Unfortunately, they told us jaundice hasn't set in yet, so we’re just waiting for the worst of the suffering to arrive.

An antifungal gel can clear up thrush in two days.
Once the bilirubin levels rise, it actually seems to have an analgesic effect; I think it hits the pain receptors directly.
Don't waste a single second thinking about anything else right now. Focus entirely on the here and now and how to make him as comfortable as possible.
Patches alone often aren't enough; you usually need a combination of different medications to cover the full spectrum of pain. Get in touch with a pain management center so they can put together an appropriate cocktail, titrate the dosage, and teach you how to adjust it yourself when needed.

Hey, Tyler Rogers3, my story follows a pretty similar path to yours.

He’s still here, still fighting. Most days he’s exactly who he’s always been—brave, strong, and sharp as a tack—but physically, he's just failing him. He tries so hard to walk, but his body just won't cooperate anymore.

The bigger challenge right now, honestly, is my wife. She’s at a point where she's ready to jump into some kind of treatment because she's having such a difficult time coping with everything.

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?

Is anyone taking Peptoran 100? Dex is really aggravating the stomach lining, which is causing some nasty nausea.
In general, a good way to handle this is by mixing ground flaxseed in a glass of lukewarm water. Let it sit for about half an hour until it thickens, then drink the water. The flax releases a mucilage that coats the stomach lining, providing some much-needed relief.

And no, it’s total nonsense that "bad people" only live to be 200 grams. They get sick too, but they deal with it on their own and nobody gives a damn, so we never hear about it.
It isn't a choice. It’s just biology. That's how the world works. Shit happens.

We'll give that a shot, thanks for the suggestion.

Are you familiar with palliative sedation? I've been weighing all our options as we approach the end.

Donna Ruiz67 said:We'll give that a shot, thanks for the suggestion.

Are you familiar with palliative sedation? I'm weighing every single option available for end-of-life care.

No. You should try reaching out to the Hospice Friends Association. They provide field support and resources.

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.

Donna Ruiz67 said:We had one anesthesiologist managing his therapy titration, two LOM specialists, a radiation oncologist who adjusted his treatment, plus two oncologists, and a whole crew of nurses—and yet, nobody thought of such a simple fix. Peptoran. Honestly, it makes me furious how everyone just writes off everything as being caused by the primary disease. It wasn't until the nurse mentioned today that Peptoran 100 is actually stronger than the Acipan 40 he's taking that it finally clicked: he just needs a higher dose of those to allow for an increase in the cortisone. Goddamnit.
He’s doing better than ever regarding the brain issues and nausea, but it's clear there's a new problem brewing... the chest.

Pleural effusion?
If that's what we're looking at, he’ll have to go on Fursemid and Kalinorm. There might come a point where things take a sharp turn for the worse, and then they'll have to perform a puncture. You basically just try to manage it for as long as possible because of the yo-yo effect.

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.

Donna Ruiz67 said:Not yet, but definitely good info to have.
The metastases in his chest are starting to cause trouble. High heart rate, shortness of breath, he’s losing his voice—and his shoulders are aching just like at the very beginning when they insisted there was nothing in his chest. Since he's a heart patient too, the ER gave him a beta-blocker and added Normabel on top of it per their advice. The heart rate did go down, but he's still struggling with shortness of breath, and now even his cough is acting up. I finally talked him into taking some Glucerna. He was put on oxygen, but honestly, it didn't do much for the breathlessness. By the way, his oxygen saturation is at 96% every single day. If only it were that simple. Lung cancer.
The ups and downs he's been hitting over the last month and a half have been absolutely jarring.

I haven't posted in a really long time, but we went through something very similar with my dad.
September 19th will mark one year since he passed away from small cell carcinoma of unknown primary origin after a two-and-a-half-year battle.

From the start, his liver was riddled with metastases, and he had them on almost every bone in his body. He went through 13 rounds of chemo following the PE protocol, and we actually managed to get the disease under control.
Six months after his last chemo session, we discovered brain metastases quite by accident during a routine checkup—he hadn't shown any symptoms at all. There were six spots: two on the cerebellum (the largest was 3 cm) and four smaller ones on the cerebrum.

He completed five sessions of cranial radiation. He took them like he was going on a little field trip rather than undergoing brain radiation; everything went smoothly, zero symptoms.

It wasn't until about two months after the radiation finished that we ended up in the ER—nausea, vomiting, a mild headache, and loss of balance. They ran an emergency CT scan and started him on steroids (first Dex, then Medrol at 40 mg daily, oral tablets). The symptoms were being caused by edema forming around the metastases following the radiation.

After that, things seemed okay, and he was symptom-free while on the steroids. Following the oncologist's instructions, we tapered the Medrol dose down slowly because she told us it would take some time for the radiation to "do its thing"—for the metastases to shrink, and with them, the surrounding edema to recede. However, a follow-up brain MRI showed necrosis in all the brain metastases, though that largest one on the cerebellum had actually grown to 4 cm (even though the center of it was completely necrotic).
The symptoms crawled back—nausea, vomiting, loss of balance—so we bumped the Medrol dose back up, following the oncologist's guidance to take 20 mg twice a day, morning and night.

That kept things under control for a little while longer.
About a month before he passed, his heart started racing constantly and his blood pressure was all over the place, swinging from high to dangerously low. My dad was a heart patient as well—he'd had a heart attack five years before the cancer diagnosis—but after that, his BP was always steady as long as he stayed on his meds.

Aside from the slight nausea and the loss of balance, thankfully he didn't have many other symptoms. When we sat down with my dad's oncologist to discuss options and what could be done if things took a turn for the worse, she mentioned it was too early for more radiation (even though he hadn't reached the maximum allowable dose yet), but noted that if the symptoms became unbearable, they could try smaller doses than the first round, or perhaps surgically implant a shunt in his brain to drain the fluid and ease the symptoms (thankfully, we didn't go that route; I think it would have been brutal for him).
But hey, that's just one set of possibilities, in case nobody has mentioned it to you. We were lucky with our doctor; she truly did everything in her power for my dad, who was honestly a phenomenon from the start of the illness all the way through his treatment.

Two weeks before he died, his heart rate was constantly elevated despite the Normabel and his other heart medications, and for a short period, he was also on Lasix (his ankles would swell occasionally, though not excessively, which is why he was on the Lasix). That helped stabilize his blood pressure sometimes, but other times, it didn't help at all.

Things were actually looking up for a little while there—about two weeks before he passed, we attended a wedding, and he managed to stay awake and hang in there for the entire night. It felt like a small win. Then, just a few days later, they put him back on chemotherapy—which was the first time he’d had it in a year—because something suspicious popped up on his liver scan. The doctor wasn't entirely sure if it was a new metastasis or something else, since it was this new growth that hadn't been there before, specifically because it looked hypovascular (basically inactive), but she decided to play it safe and prescribed two more rounds of chemo just in case.

By the time he finally ended up at the hospital, things were already looking pretty grim—he was running a fever of 100.4, and his blood work was absolutely disastrous (white cell count was basically zero and CRP was sitting at 350). His blood pressure had dropped so incredibly low that neither our home nurses, the visiting caregivers, nor even the staff at the hospital could actually get a reading on it. To top it all off, his heart rate was absolutely racing.

He passed away in the hospital tonight. They told us he was already in septic shock by the time he was admitted—which honestly makes zero sense because Dad didn't show any signs of sepsis before that. He just woke up with a fever that morning, so Mom gave him some Advil, the temperature dropped, and it stayed down after that. It all happened so fast.

That day, besides those intense heart palpitations, he was breathing fast and feeling short of breath—plus he was a little out of it (he actually congratulated me on my birthday, which wasn't even for another month). His oxygen saturation levels, though, were totally normal.
The only thing was that his kidneys failed him—he didn't even pee at all that day, so his electrolytes were completely out of whack.

We still don't know the exact cause of death—since an autopsy was never performed. The hospital staff initially told us it was septic shock, but my dad’s oncologist later stepped in and said she was certain it wasn't sepsis. Based on how her breathing and heart rate were acting, she felt it was more like some kind of systemic shock.

I went a little overboard with the length of this post—my bad. I just wanted to give a quick, condensed rundown of everything that’s gone down for anyone who might have missed the earlier threads.

You should definitely ask about the possibility of re-irradiation and whether they’re looking into installing a shunt in the head. In my dad's case—it had been seven months from the time he finished radiation on his head until he passed—the doctor was actually still weighing the option of doing more radiation if his symptoms took a serious turn for the worse. Even then, she mentioned she would have used a much lower dose than the initial round. She just kept it on the table as a potential option.
She was holding onto this hope—just like the rest of us—that chemo would actually do something about those brain metastases, even with that stubborn blood-brain barrier in the way. The logic was that certain studies have shown chemo can actually have an impact on brain mets when dealing with microcellular carcinoma. I even did my own digging and dug up a few scientific papers myself, and when I ran it by her doctor, she actually confirmed it.

Unfortunately, we didn't even get to see if that last round of chemo actually worked—my dad passed away just a week after it started.

You really need to dig deep into whatever options are left on the table—don't just take things at face value. Sit down with the doctor, ask the hard questions, and fight to get everything available. There’s absolutely no point in letting him suffer if there’s even a chance to ease the symptoms. It's worth the battle.

I honestly have no clue what exactly is going on with your dad’s treatment plan right now—specifically whether he’s even being considered for any more chemo—but it might be worth asking the doctors about that. Sometimes, you can request a lower dose just to see how his body reacts before committing to the full amount... just an idea.

I don't know about you, but hearing your story about those brain metastasis symptoms—it really hit home. It reminded me so much of the symptoms my dad went through.
Hang in there—I truly hope your dad’s pain stays minimal. It’s hard to say this because I lost my own father, and honestly, not a single day goes by where I don't think about him or find myself replaying that final day over and over in my head—but as much as it hurts, I am so incredibly grateful that he didn't reach that stage where the illness just takes over and leaves you in total agony.

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.

Look, if you’ve read the part about my dad’s story, then you already know how hard he fought.

The max brain radiation dose is 40 Gray—at least that’s what my dad’s oncologist told me—and my dad received 20 Gray over five days of treatment (so, basically 4 Gray a day).
She mentioned that if they absolutely had to go back in for more radiation, she wouldn't want to give him more than 2 Gray per day. Ideally, they’d wait at least a year after the last round before repeating it, but if it became necessary, they would do it.
We actually discussed this as an option about six months after his radiation finished. She explained all the ways they could make things easier once symptoms started worsening, even mentioning the last resort: installing a shunt to drain the CSF and reduce the edema around the metastasis.

During those last two weeks, Dad’s heart rate was bouncing between 100 and 125 beats per minute; we could rarely get it down below 100.
The silver lining in everything was that my dad didn't suffer or struggle through it. Death came fast and unexpectedly—well, expected because of the illness, but not in that specific moment. Even his oncologist was caught off guard when I called her to let her know; she even commented on how good he looked when he came in for his last chemo session.

I don't know how your dad is handling the steroids, but they completely changed mine—both physically (the poor guy was so swollen, looking thick around the neck and shoulders) and mentally. He had these episodes where he'd be aggressive, angry, and just plain rude to us, followed by periods of being totally normal, and then deep depressions where he’d just stare at a single point and refuse to communicate with anyone.

Eventually, he just gave up. He was devastated by the last MRI, which showed that the largest metastasis had grown. Plus, since he had to stay on Medrol, he couldn't really do much with us anymore; he mostly spent his days in front of the TV in his room. We actually had to practically beg him to go to a wedding two weeks before he passed. He had already decided against it, but my brother killed it at his soccer game that day—he was the MVP—and seeing Dad so happy about that made him decide that he and Mom would go after all. They ended up staying out until 3:00 AM (right after some goulash that he had been enjoying all evening).

The saddest part is that the girl getting married is a childhood friend of ours, and my sister was the maid of honor. Back when they were seven months along in their engagement, they visited us, and Dad told them he was just waiting for their wedding so he could eat some more goulash, and *then* he could die. And that’s exactly how it played out—Dad passed away exactly two weeks after the wedding.

I’m not sure where your dad is receiving treatment (mine was at the Mayo Clinic, and I can't say enough good things about them), but try talking to the doctors about additional radiation or a shunt. I think the medical history you received after the initial radiation should list exactly what dose he received, so use that to see what they say.
They can always increase the steroid dose, but you really need to discuss that with the oncologist. We peaked at 40 mg of Medrol, but the doctor said she would bump it up if necessary. That was the first line of defense, and then they’d figure out next steps if the steroids stopped working.

Dad absolutely adored his doctor because she always had a plan. She—and everyone else at the Mayo Clinic—never told him there was no hope or that he was going to die. We all knew, obviously, but the doctors never treated him like that. No one ever told him there was no point in doing anything because he was a lost cause.

My dad was cheerful every time he came home from a check-up, staying positive and hopeful that he’d be with us for a while longer (even though he knew he wasn't going to be cured).

Megi hasn't reached out in a while, so none of us know how her dad is doing. I'm hoping everything is still okay and that's why she's quiet. (For anyone wondering: Megi's dad was diagnosed with small cell lung cancer, non-extensive; he was treated in a clinic in the Midwest, if I remember correctly, following standard protocol: chemo plus radiation, followed by preventative brain radiation. For months after treatment, all his scans were clear with no signs of the cancer returning).

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.

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?