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

Dad is headed in for another surgery. That makes four in just two years. The main goal is to fix up his liver, and then they'll just clean out whatever else they find while they're in there. He hasn't been on chemo for 15 months now.

Yesterday marked our very first family get-together without Dad around... 😢

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Here is a little update on our situation... On Friday, I took him to get his blood work done at the clinic. Around one o'clock, the nurse called me to say the results were ready—she’d already written him an urgent referral for internal medicine because there was something in his blood that absolutely shouldn't be there. Honestly, my heart just sank, but we pushed through. He was driving just fine and managed to park right in front of the hospital, but then suddenly, he couldn't even stand on his own two feet. My God, I was thinking—it isn't like he's nothing, yet he had zero strength left. I went in to drop off the referral and grabbed a wheelchair. The Hegel clinic was packed to the rafters. We waited a bit, and then—total blackout. He completely lost it. He didn't know where he was, who he was, or even who I was; he just stared blankly at a single point, looking right through me. He tried to get up from the wheelchair but physically couldn't—it was total delirium. I can't tell you how much I wanted to cry watching him like that. Once we got inside, the exam went okay. When the internist asked why he was being sent over, I honestly had no clue—just that it was something in the blood. I explained to the doctor that he’d been dealing with diarrhea for five days, issues with his fibrinogen, and that he hasn't been eating well and is barely drinking anything. They decided to repeat the CBC and run a chest X-ray. We stepped out for some fresh air while waiting for the results, and he was drifting in and out of consciousness again. Damn, my mind immediately jumped to the absolute worst-case scenarios. When we went back in, they hooked him up to an IV. The doctor thinks the imaging shows pneumonia, but she wants to send him to a pulmonologist to confirm everything and get a specialist's opinion. And my man? Still acting totally out of it! The imaging and the presence of erythroblasts suggest pleuropneumonia, severe anemia, dehydration, malnutrition, critically low potassium, and fibrinogen issues—he has to stay. It's just overwhelming. I found myself thinking, if this really is the end, maybe it would be better if he didn't know who he was, but I refuse to let him stay stuck in a hospital bed. However, the doctor on duty could see clearly that he wasn't himself, and I knew I couldn't just make the call to leave him there. By yesterday morning, he was still in that same mental fog. His attending pulmonologist arrived, and I straight-up asked the wife if he was in the terminal phase. She told me he isn't even close to that; he's simply in this state because of the anemia, the fibrinogen, and the dehydration. She confirmed the severe pneumonia, so now it's antibiotics, blood transfusions, IV fluids, glucose, and a CT scan—they need to check some enlarged lymph nodes to see if it's due to infection or disease progression. We returned in the afternoon, and he finally started coming back to himself. He began eating, moving normally, and actually functioning again. This is going to be a hard lesson for him: he cannot refuse to eat! He’s on Floxin now, but his blood work from this morning showed that his levels dropped again despite the transfusion—we're just praying that's just a side effect of the infection and the antibiotics...

ruggedfox11, I truly, deeply hope everything starts looking up for you soon! Honestly, I think you are an absolute powerhouse—the way you’re fighting through this relentless illness is nothing short of incredible. You deserve to come out on top of this beast! Those swollen lymph nodes could just be a reaction to inflammation; I'm really crossing my fingers that's all it is. As for that strange mental fog you mentioned, my dad used to go through similar episodes whenever his blood counts dropped. He always felt much better once he had transfusions.
I’ve been feeling a bit low lately myself (partly because I’m currently tapering off antidepressants), and after a family gathering yesterday, I had this dream last night that my dad was still alive and I was rushing him from hospital to hospital. I woke up in a complete puddle of tears... Even though I keep telling myself I won't dwell on it, I can't help but wonder if there was anything more I could have done. That nagging "what if" just keeps haunting me...

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Robin Diaz4, this is our first time navigating this kind of mental headspace together. I was just reading somewhere that that specific antibody might actually cause the blood counts to drop even further. Oh boy...

I used to dream about my grandfather every single month—every single night, really. I didn't take him through hospital rounds or anything; he passed away in his sleep. But I spent a good portion of my childhood by his side, and he taught me so much about life. The last time I saw him in a dream—which was nearly 13 years ago now—he was sitting right there at the table with me, looking me in the eye and saying, "Everything is going to be okay; just cherish what you have." He hasn't visited my dreams since, even though I think about him constantly and mention him all the time. Even now, after all these years, I still find myself half-expecting to see him standing in the doorway or to hear his voice on the phone. Your reaction is completely normal; it’s only natural that it hurts so much... My husband is still with me, but I still catch myself wondering if I could have done something differently back then. If I had pushed him to get his progesterone levels up to 2ng/dL, maybe the course would have been different, or easier to manage... I don't know. But I know that feeling of "if only I had..." all too well. Everything you're feeling is still so raw. People love to say that time heals all wounds and that life moves on... It does move on, but I don't think it "heals" per se. It just gets a little easier to carry. Hang in there!

ruggedfox11 said:People always say that time heals all wounds, that life just moves on. It does move on, but I don't think it actually heals anything... it just gets a little easier to carry. Hang in there.

It’s not about healing; it’s about accepting the facts and finding a way to live alongside them...
A friend of mine, who lost her mother five years ago, tells me there isn't a single day that goes by where she doesn't think of her. In fact, it was only recently, after all this time, that she finally had a day where she *didn't* think of her—and then she spent the entire following day in tears because of it.

For me, the hardest part was dealing with my father’s stubbornness. He refused so many things; for instance, he wouldn't even catch a whiff of beet juice, let alone drink it, and he absolutely refused to travel abroad just to get a second medical opinion. Because of that, I find myself constantly wondering if things would have turned out differently if he had just been more flexible... Or, for that matter, would it have been better if he hadn't agreed to the chemotherapy in the first place? I honestly don't know, and I never will, and I can't seem to stop myself from dwelling on it—even though my rational mind insists that everything happened exactly as it had to.

As for his mental state, given the sheer volume of medication he was on and the physical stress his body was under, it’s hardly surprising when people occasionally lose their grip. Just looking at the amount of heavy-duty painkillers my dad was taking—and please forgive my bluntness—those are serious drugs. It would be stranger if his brain didn't occasionally wander off into uncharted territory.

Robin Diaz4 said:It’s not about curing the grief; it’s about accepting the facts and learning how to live with them...
A close friend of mine, who lost her mother five years ago, tells me there wasn't a single day that passed without her thinking of her. It was only recently, after all this time, that she actually had a day where the thought didn't cross her mind—and then she spent the entire next day in tears because of it.

For me, the biggest struggle was my father. He was incredibly stubborn about certain things (for instance, he wouldn't even catch a whiff of beet juice, let alone drink it; he refused to even consider traveling abroad just to get a second medical opinion, etc.). I find myself constantly wondering if things would have played out differently if he had just been more flexible... Or, perhaps, would it have been better if he hadn't agreed to chemotherapy at all? I don't know, and I never will, and honestly, I can't help myself. It eats at me, even though my rational side knows everything happened exactly as it had to...

Regarding his mental state—considering the sheer volume of medications he was on and the massive physical toll his body endured—it’s hardly surprising when people occasionally lose their grip. Just looking at the amount of heavy-duty painkillers my dad was prescribed, if you'll excuse the bluntness, we're talking serious stuff. It would be stranger if his mind didn't wander or slip from time to time...

Please, don't do this to yourself. Truly, don't.
Your father was an adult who made his own decisions, and you have to respect those choices. You are responsible for yourself; you aren't responsible for anyone else, even if you want to provide support and help whenever they need it.
But at some point, an individual has to be the one to decide their own path.
I went through the same guilt, wondering if there was anything more I could have done for my dad, but what would the result have actually been?

Men often hate feeling weak; many would rather pass away than feel like a burden or have someone fussing over them. We have to respect that. I remember feeling such profound sadness while changing my father's diapers, seeing the shame in his eyes—it felt as though he was silently pleading with me to just let him go.
That was one of the hardest things I've ever faced, but I honored his wishes, even though I could only sense them. He couldn't say a word because he was non-verbal.

You have to realize that, for your father, this might have been the best possible outcome. He was sick, and he was exhausted.
Now, you need to focus on taking care of yourself. I think some of us daughters who loved our fathers deeply were a little selfish—we wanted them by our side even when they were suffering, but we have to accept that letting go is often what's best for them once the illness takes hold.

Every month, I visit my father's grave. I let myself cry, and sometimes I talk to him out loud, telling him about what's happening in my life. I don't know if anyone is listening, but it helps me.

Heal yourself. Your dad is in a much better place now than he was in that hospital bed. You gave him everything you had, I'm sure of it. Some things are simply more powerful than our small human efforts to make everything okay. Look at the hurricanes and the floods we see in the news; we are small and powerless, yet we remain incredibly brave.

I read your posts regularly. Take care of yourselves, everyone. 🙂

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.

It’s true—like Terry Lopez18 said, these things end up affecting everyone. I’m really kicking myself right now, but I can clearly see where this path is heading... It’s just constant bouts of depression, reaching for a beer every chance I get, picking fights with everyone, snapping at people for no reason—nothing brings me any joy anymore. To be fair, I’ve never been the most rational person; my world has always been either pitch black or completely white. But even then, it was in these unreal, extreme shades. And when that "white" phase hits, you feel happy, but that "black" side? It’s nasty. It’s heavy. It drags you down. And the absolute worst part is being fully aware of it all, yet somehow slowly surrendering to it—you know, like you're barely keeping your head above water; that tiny little voice of reason is still there, but...

Don't let go.

My logic tells me everything you guys are saying, I really do get it, but sometimes that irrational side of my brain just takes over the driver's seat... I can't stress this enough to everyone following this thread: please, for the love of God, take care of yourselves. I didn't listen to reason back then, and I nearly completely destroyed myself both mentally and physically.

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Robin Diaz4 said:My logic tells me everything you guys are saying—I really do get it—but sometimes that irrational side of my brain just takes over... I can't stress this enough to everyone in this thread: please, please take care of yourselves. I didn't listen back then, and I nearly destroyed myself both mentally and physically.

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You'll understand what I mean—right now, I feel like I've been tossed straight into a pit of lions, or maybe dropped into a pool full of sharks.

ruggedfox11 said:You'll get me eventually—right now, I feel like I've been tossed into a lion's den or thrown straight into a pool full of sharks.

Everyone on this thread totally gets where you're coming from...
How are things holding up today? Hopefully, life is treating you a little better!

Robin Diaz4 said:Everyone on this thread seems to understand you...
How are things today? I really hope things are looking up!

As for the situation... He won't be getting any more transfusions because his levels have hit her lower limit—not even close to 100, let alone reaching a normal baseline. I found out he can take iron supplements alongside the Lovenox, but honestly, his mental state has just completely spiraled. So, they’re going to discharge him tomorrow to go home on his own terms—following the surgery and the CT scan—along with some oral antibiotics. I'm almost at a loss for words; part of me thinks it would be smarter for him to stay put, but since being here is causing him such intense psychological distress, it's better to let him be home where we can watch over him. I just pray that the CT scan comes back stable regarding any cancer concerns.

My dear husband was asking to be discharged today. He finally got the green light. Yesterday morning, they stopped his IV fluids—the potassium and glucose infusions. We have a CT scan scheduled for tomorrow, and his CBC looks alright, though his red blood cell count is still recovering quite slowly. What’s really weighing on me, though, is that from yesterday morning until this very moment, he hasn't had a single liter of water. Today, I could barely get him to finish half a liter—and even then, it was a struggle. He isn't losing weight rapidly, but he's so confused; he'll say one thing and clearly mean another, and his sentences just don't seem to connect to what he actually wants to do. His writing, however, remains normal. If you look at the big picture—low potassium, the primary illness, dehydration, anemia, and pneumonia—it all points to the same thing... but given how bad he was on Friday, even after the fluids were restarted, I truly believe he's still severely dehydrated. It is just incredibly difficult to witness and live through this...

ruggedfox11 said:My darling is begging to be sent home today. They actually let him go. Yesterday morning, they pulled his IVs—the potassium, the glucose, everything. We have a CT scan scheduled for tomorrow. His blood work looks okay, aside from his red blood cell count, which is recovering at a snail's pace. What’s really eating at me is that he hasn't touched a single drop of water between yesterday morning and this morning. Today, I can barely force him to drink half a liter. He isn't losing weight rapidly, but he’s confused—like, profoundly confused. He’ll say one thing and clearly mean another; his sentences just drift, disconnected from whatever he’s actually doing. He can still write normally, though. If you want the clinical breakdown, it's low potassium, the underlying illness, dehydration, anemia, and pneumonia. But honestly, considering how bad he was on Friday, even after they cleared the IV fluids, I think he’s just severely dehydrated. Watching this... living through this... it is incredibly hard.

Dehydration completely wreaks havoc on your brain chemistry.
Get him some bacon to help bump those white blood cell counts up, and make sure he's sipping on Donat all day. I'm not sure if your doctors mentioned it, but he should probably be sipping on some Pedialyte throughout the day too.

On another note—November 13th will mark ten years since my mom passed away.
Ever since I found out about her diagnosis, every single day has felt exactly the same. It’s this heavy, constant void that just keeps growing—especially because she never got to meet her grandkids. They grew up without ever knowing her. Sometimes I look at my dad and I can't help but think about how incredible it would be if Mom were still here. Honestly, if things had gone differently, I probably wouldn't even be seeing my kids right now.
Life is just one damn thing after another.

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Dear ruggedfox11, we all know just how much you're going through right now. Hang in there—there are definitely rough patches, but better days are coming. I’m keeping my fingers crossed that your ultrasound results come back positive!

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analogbison0 said:Well, here we go again... we've finished all the pre-op prep. Honestly, every single test came back perfectly fine—CBC, liver panel, urine tests, cultures, EKG, everything is totally normal—except for that one thing that's really spooked me; her fibrinogen is at 6.2, and since the lower limit is around 3, it pretty much confirms we're looking at something malignant.
As for that hormone they mentioned earlier (I think they said estradiol), we didn't even bat an eye because Mom has been in menopause since she was 33 due to some past radiation and medical mishaps... so it makes total sense that her levels would be wonky regardless.
Based on everything, the assumption is that it's advanced ovarian cancer, but like everyone knows, you won't truly know how much of a mess things are until they actually open her up. They did say oncology treatment is definitely on the table afterward, assuming she can handle the surgery, since the tumor itself is absolutely massive. If there's any silver lining, it's that her liver enzymes are normal, which suggests the cancer hasn't completely taken over the liver yet, and it’s more likely we're dealing with early-stage metastasis.
I'll check back in after the surgery on the 18th once chemo starts...

analogbison0, how did the surgery go? What do the results look like? Has she started treatment yet?

Robin Diaz4 said:Dear ruggedfox11, we all know just how tough this journey is for you right now. Hang in there—there are definitely rough days, but there are good ones too. I'm really hoping the CT scan comes back with good news!

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The CT shows some regression, but things are still pretty unclear.

ruggedfox11 said:The CT shows regression, but he’s still totally out of it.

Radiation trauma can definitely leave lasting marks on the brain.
That said, I suspect this is more about electrolyte depletion. He needs to focus on recuperating.

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Angela Wright said:Radiation trauma can definitely leave its mark on the brain.
But honestly, I suspect this is more about an electrolyte imbalance. He really needs to focus on recuperating.

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Well, we'll find out soon enough. His blood sugar is spiking, so we're back to monitoring with the Hegel—they'll probably run an electrolyte panel next, too.