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

My potassium, chloride, and phosphate levels are all low. Just barely hitting the normal range. I even called the oncology department—they told me there’s absolutely no way this is being caused by radiation.
It's just wild to me how much an electrolyte imbalance can mess with your brain—and the fact that it takes such a long damn time to recover? That part I don't quite get. I can wrap my head around anemia or having a low red blood cell count, but this...

Sending greetings to everyone from our newest department—Neurology!
Well, you heard it here first—we’re practically touring the whole hospital at this point. 🙂 🙂>
Honestly, it’s been such a massive oversight in his care... I’m actually at a loss for words. Last Friday, as you know, we ended up in the ER and then over at Pulmonology because of pneumonia. His pulmonologist was fully briefed on his mental state—which was completely normal at the time. He comes home on Wednesday, and suddenly he's confused again... Then Thursday happens too. Look, the man is 200 lbs and 6'6", and here I am, barely five feet tall—it’s overwhelming. He’s so weak he can't even stand up; it’s just heartbreaking. Friday morning, I’m taking him to see his primary care doctor for an infusion due to his blood sugar, and he starts panicking. His wife calls 911. They rush us to the local hospital, where he gets NaCl, all while they explain that his mental state is just a result of brain metastases that "might have regressed"—though they definitely haven't. It's ridiculous. He isn't feeling any better at all. He is fully aware of everything, trying so hard to form actual words, and when you look into his eyes, you see nothing but fear, sadness, and shame. But you can't do anything; they just insist he has no idea what’s going on, even though his eyes tell a completely different story. And yet, there they are, being so adamant that he absolutely has to be admitted. Not on my watch. I won't let that happen. But then his sugar spikes again, and they use that as an excuse to call the paramedics again. Back to the hospital, back to being told it's just neurological issues—at which point he started struggling to even say "I need to pee," likely out of pure embarrassment and humiliation. He gets nothing but KCl and the same old explanation about brain metastases. For heaven's sake, where is the actual help?! By the afternoon, he isn't even himself anymore. It’s over. I’m exhausted. The poor man is twitching, and my hands are shaking. A nurse came by to give the infusion, but it did nothing. I truly felt like this was the end—God, please, just don't let him suffer. Then his wife pushes again, insisting he needs the ER because of his arm, so we call them. I look at him, and his expression says it all: "I'll do anything, just please don't make me go back to that hospital." It breaks my heart. The doctor says, "Neurological issues—let's head to the Neurology ER." Great! Let's actually find out what's happening in his head. Just pure luck! We move him from Pulmonology, but the doctor there tells me that if he sends him to Neurology, it would be a "failure in treatment protocol" because the patient is technically a pulmonary case. He basically told me, "You have unrealistic expectations (probably because I saw your email to the Department of Health)," and claimed there's nothing more they can do because of the metastases.
"Oh, really? And what makes you so sure of that?"
"Well, it's just the standard disease protocol."
Disease protocol???? What on earth does that even mean?
They just gave him an infusion, Dexamethasone, and KCl—AGAIN!!
Not a single neurologist was even consulted!! He’s in a heavy delirium, yet he's conscious of every single thing happening. The nurse on duty actually spoke to him like he was incompetent, saying, "Look, your brain isn't working, you can't process this." I told her, "He is fully aware and understands everything, he just can't speak!" I feel like I'm losing my mind—he has no idea what's happening, he is DYING!! The poor soul, you can see the grief, the anger, and the disappointment on his face. He just wants to go home! He's shaking! And she has the nerve to tell me there isn't room for people like him on the ward!! Finally, we get him home. He can't even stand. His wife is breathing down my neck about the hospital staff. I called his primary doctor, and she told me, "The scans show regression, but the clinical picture shows progression—straight to Neurology!" So that's what happened.
And even they didn't have any real answers—they're either calling it seizures, sleep deprivation (he hasn't slept in 15 days), or "the underlying disease"—which is my favorite thing to hear. The brain CT came back clear! So they just left him in the Neuro ICU for them to deal with later! All while emphasizing how much of a mistake it was to treat him this way. Three separate times this man presents with neurological symptoms, and they just dismiss it based on his diagnosis! But WHY?? Why are all patients lumped into the same bucket? Are they trained in medicine or just in how to maximize insurance payouts?! This is devastating!!!

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This really takes me back to what happened with my father. Every time he’d be admitted to the internal medicine ward—specifically where they handle hematology and oncology—they’d practically brush him off and send him straight to pulmonology without even giving him a proper look. And the thing was, his issue wasn't even lung-related at the time; it was strictly a hematology matter involving crashing platelet counts. Honestly, don't even get me started on how every department tells you a completely different story. One day the pulmonologists are claiming regression, then two days later the oncologists are telling you it's progression. It makes you wonder, which is why I actually asked on here once: is it possible for a doctor to give a "prettier" diagnosis than the actual reality just to keep the patient and the family calm? Anyway, if someone hasn't slept for fifteen days, I'm pretty sure even a perfectly healthy person would start losing their mind. Back in college, I went four days without sleep trying to hit deadlines, and let me tell you, things get blurry fast. I hope the neurology team can get him stabilized and back on track! Hang in there, I know how incredibly tough this is...

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ruggedfox11, I wouldn't trust those people at Firul even to look after my dog.
I've already told you everything.

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Angela Wright said:I wouldn't even trade my dog for the care at Firul.
I've already told you everything I know.

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That’s exactly why I double—actually, quintuple—check everything they do once we're away from Firul..
Robin Diaz4, listen, when I haven't had a full night's sleep, I'm barely functional myself—let alone after fifteen days. The neurologists managing his care seem decent enough; they're doing their best to get him settled so he can finally drift off and get some actual rest. They'll get him back to his usual self soon enough.

Honestly, I’m just completely lost at this point... He saw his psychiatrist today, and they didn't even suggest any new medication—they just officially noted the diagnosis as psychoorganic syndrome. I’ve been doing some reading on it, and honestly, it doesn't seem to align with his current condition (at least not based on the primary symptoms listed), plus, the whole idea of brain cell degeneration is supposed to show up on a CT scan—but his CT came back perfectly normal. Now, his neurologist wants to run an MRI (they did one on his arm, but no gel was used) to check if there are micrometastases on the meninges or if we might be looking at encephalitis—which, again, should be visible on a CT—but his scan was clear. Meanwhile, a friend of mine who is an oncologist—and he really specializes in central nervous system tumors—is saying that a state like this can only be caused by significant metastases, regardless of whether they are in the brain or the meninges. To top it all off, there hasn't been a single word from his pulmonologist. He has been sleeping since this morning—they only gave him an extra pill for "seizure activity" (Tegretol; though they supposedly ruled out seizures) and started him on a Q-pin for sleep (which they actually introduced back on Sunday). He wakes up just long enough for lunch and then drifts right back to sleep. When I went to visit him, he was just sleeping. I mean, how are you even supposed to make sense of this? It feels like everyone is just guessing—and frankly, it's obvious they don't have a clue what's actually happening. I still find myself stubbornly believing that maybe he just needs a decent, uninterrupted sleep to recover.

He's gone to a better place now...

I feel for you... you fought for him like a lioness...😢🙂

Oh man, I am so incredibly sorry... dear ruggedfox11, you truly fought like a lioness. Hang in there... Sending my most sincere condolences. :-*

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ruggedfox11, I am so incredibly sorry....

Just hold on to the fact that you gave it everything. You fought with superhuman strength... you really are a lioness. Hang in there through whatever comes next... 🙂

Greetings, everyone.

@ruggedfox11/">@@ruggedfox11 — my sincere condolences. I’ve sat here and gone through every single one of your posts from February 14th until now, and I can say with absolute certainty that you truly gave it everything you had.

First off, I have to say that the mere existence of this group is something truly worthy of immense praise. I find myself deeply admiring everyone who takes part in these discussions.

Here is my story:

August 23rd. My father was admitted to the hospital because his left arm just... quit on him. Total loss of function. They ran a chest X-ray first, which showed some shadow, and then they had him in a head CT that very same night. It picked up a 31mm lesion. Shock. Absolute shock.

The same day, he was transferred over to Jordan, where they put him on Dexamethasone.
By the very next day, his hand started showing signs of improvement, only for things to settle back to nearly normal within just a few days.

The bronchoscopy was performed on August 30th. It confirmed the diagnosis: adenocarcinoma of the lung.
Since he’s diabetic, his blood sugar has been absolutely spiraling out of control lately—all because of the Dexamethasone. It’s one of those unfortunate side effects that just hits you out of nowhere. Because of that, they've had to switch him over to insulin; he was managing just fine on tablets before this, but now things have shifted.
In my daily chats with my dad, he keeps telling me how he’s doing "absolutely fantastic." He claims he’s eating like a king now, and apparently, he’s feeling strong enough to take a stroll over to the local shopping center without breaking a sweat.
I find myself stationed way up in the far northern reaches of the country right now. Despite all the suggestions that there’s absolutely no reason for me to make the trip, I’m dropping everything, cutting my work short, and heading straight into the city.

September 5th. Just before my appointment, I had a digital chest X-ray done. It showed absolutely nothing has changed compared to the one from two weeks ago. Same old story.

September 6th. The first round of chemo begins.

I’m making my first visit today, and honestly, it’s another brutal shock to the system. He’s lost a significant amount of weight, and his mobility is visibly compromised—it’s painfully obvious that he’s having to "drag" his left leg along. When I brought it up, he mentioned that the leg started acting up just a few days ago. He also told me that he stepped on the scale last night and he’s already down 12 pounds since he was admitted to the hospital. That's a massive drop for just a two-week stay.

I was sitting there having a conversation with my doctor, and honestly, she didn't even get past my very first question about his condition before she started rolling her eyes at me. It’s just one of those things, isn't it? You go in expecting a professional dialogue, and instead, you get that blatant, condescending dismissal. I suppose I shouldn't be surprised anymore—it feels like you can't catch a break lately.
I mentioned how much weight he’s dropped and asked what the plan was to address it. He claims he's being prescribed Supportan—which I naturally double-checked, because of course that wasn't true—so the next day I went out and picked up some Supportan myself to bring to him. He hasn't actually started taking it yet, though; the chemo has just been absolutely kicking his teeth in for the last few days.
I asked her about the size of the lung tumor, and she just told me she couldn't find that information in the system right now... which, of course, makes perfect sense, considering they only ran an X-ray.
They keep telling me, over and over again, that I need to wait on those brain MRI results. Apparently, getting that sorted is the absolute top priority right now. It’s all they talk about.

September 11th. Regarding the MRI results. There is a metastasis in the head, specifically on the right side—an expansive intraparenchymal lesion in the upper frontal gyrus measuring 40x28x36 mm. There is also a 4mm inhibitory lesion in the parietal lobe that seems to correspond to a second focal lesion. I spoke with the neurosurgeon today, and he informed me that we are actually only dealing with one single lesion, which is operable. It’s all quite heavy. Just sitting here trying to process how one small spot can change everything.
The transfer to the rib is on the schedule, though things are dragging out a bit. It looks like we’re facing some delays due to some kidney function issues. Just one more hurdle, I suppose.

September 13th. I’ve lost another five pounds. That puts me at seventeen pounds down in just three weeks. Honestly, if this keeps up, I’m going to lose my mind—I'll be marching straight into the doctor's office tomorrow morning to demand a real sit-down. They actually started him on Glucern (that specialized formula for diabetics) first thing this morning, though. While I'm there, I figured I’d pepper him with a few more questions. Specifically, I need to know when they're finally getting that CT or PET/CT scan scheduled for the abdomen and chest.
Then she starts getting all worked up about why he even needs the PET/CT scan. She's arguing that since they already know exactly where the primary tumor is located and he’s already being treated for it, the scan is redundant. Her logic is that we should just be waiting for his kidney function to stabilize so he can be transferred immediately to the Mayo Clinic to deal with the metastasis in his head.
In the meantime, things are steadily sliding downhill. His balance is completely shot—he’s leaning heavily toward his left leg now—and his speech has started to slur. It's just one thing after another.

So, it turns out the CT scan for my chest and abdomen is still happening on September 18th. It’s the same day I have that follow-up appointment with the doctor. She mentioned there’s something showing up on one of my vertebrae, but she was quick to point out it isn't causing any pain. Apparently, it's in the very early stages—just a starting point, really—and she expects it to resolve itself on its own later on. Just one of those things, I suppose.

September 19th. I’ve been transferred over to the Mayo Clinic. I just received my discharge papers, and looking at the CT scan results... well, it isn't exactly comforting. It describes a solid mass infiltrating all three lobes of the right lung, measuring roughly 92x86x69mm. There’s also a lymph node in the right hilar region, about 13mm in diameter, which seems to be continuous with that mass. Then there’s a lytic lesion at the T9 vertebra—which could very well be a bone metastasis. To top it all off, they noted a focal thickening of about 19mm where the left adrenal gland branches meet, though the etiology remains unknown, and a small pericardial effusion reaching a maximum depth of 9mm. Just one thing after another.

Sept 22nd – surgery day. They removed the metastasis from his head, and thankfully, everything went smoothly. Such an immense sense of relief.
I had a long talk with the neurosurgeon about that second lesion. He suggested the radiologist might have misread it initially. We went back to review the scans together, and he confirmed there’s nothing left—everything looks clear now.

Sept 25th – He was up and walking a bit, but by the next day, it got harder. He started feeling numbness in his right leg... When they tried to remove his catheter, he couldn't urinate, so they had to put it back in. He underwent an MRI of his thoracic spine—turns out most of the vertebrae and the spinal cord are affected, and it isn't operable. The prognosis is grim: everything below Th9 is going to fail, including sphincter control and bowel function. It's a total nightmare.

By Sept 30th, both legs had already failed him.

He’s coming home today. We're busy prepping everything—getting the hospital bed ready, the pressure ulcer mattress, all of it.
Honestly, my dad is an absolute rock. His positivity and defiance are unlike anything I've ever seen.

I can't help but wonder... could this paralysis have been prevented if they had done radiation while he was still at the Jordan facility between Sept 11th and Sept 19th, before he was moved over to the Rib? Or was the leg issue caused by the brain metastasis or the spinal one? After the Dexamethasone, his left arm regained function immediately, but then the left leg started failing shortly after.

Has anyone else here gone through something similar? Is there any hope for regaining mobility through further radiation or perhaps radiosurgery, maybe at a specialized center like Radichirurgia in St. Nedelj?

If you have any advice regarding home care, please, anything is welcome.

Apologies for the long post, but I just needed to get this all out.

I’ve been lurking in this thread for the last three months, ever since my mom was diagnosed with cancer. I haven't posted anything, but I've been following along every single day—especially ruggedfox11's fight. Honestly, dear ruggedfox11, I am just so impressed by your strength. I truly believed you guys were going to pull through this...
My heart goes out to you. Hang in there. 🙂

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.

ruggedfox11, I am so incredibly sorry. My heart truly goes out to you...

ruggedfox11, I am so incredibly sorry. I really wanted this to work for you, and I truly believed it would... I'm just so sorry.

ruggedfox11, I am so incredibly sorry, my heart truly goes out to you...

After three years of peace, the pests have spread through my lungs in just three weeks. Mom is stuck in the hospital on an IV drip, and I’m just sitting here waiting for Friday so I can finally head home and be with her for at least the weekend...

ruggedfox11 said:He’s in a better place now..

I opened this thread this morning and felt a sudden pang of

Please accept my deepest and most sincere condolences.
Both of you fought like lions, and given his diagnosis, what you achieved was nothing short of a miracle. I truly believe God called him home to spare him any more suffering.
I hope you find all the strength in the world to pull through this and eventually find some peace of mind.
Take care of yourself.

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cosmicmason15 said:Hey everyone,

@ruggedfox11/">@@ruggedfox11 — I am so incredibly sorry. I’ve gone back and read every single one of your posts from February 14th until now, and I can say without a doubt that you truly gave it everything you had.

First off, I just want to say that having a group like this actually exist is something worth huge praise. I have massive respect for everyone here who takes part in these discussions.

Here’s how my story goes:

August 23rd — My dad was admitted to the hospital because his left arm just gave out on him. They ran a chest X-ray that showed some shadowing, and then they rushed him through a head CT that same night. It turns out there's a 31mm lesion. Total shock. Everything hit us at once.

The same day, he was transferred over to Jordan, where they put him on Dexamethasone.
The very next day, his hand started showing signs of improvement, and within just a few days, things were almost back to normal.

The bronchoscopy was performed on August 30th, and it confirmed a diagnosis of lung adenocarcinoma.
Since the diabetes went haywire because of the Dexamethasone, he’s been switched over to insulin. He was relying on pills before this, but that's no longer cutting it.
Every time I talk to my dad lately, he’s giving me the same line: he says he feels absolutely incredible. He claims he’s eating like a king and can easily walk all the way over to the local shopping center without breaking a sweat.
I'm currently stationed way up north, practically at the edge of the world. Even though everyone keeps telling me there’s absolutely no reason for me to make the trip, I'm dropping everything, walking away from my work, and heading straight to the city.

September 5th—just a day before my appointment—I had a digital chest X-ray done. It showed absolutely nothing has changed since the one I had two weeks ago.

September 6th – first round of chemo.

I’m stopping by for my first visit since the last update, and honestly, it’s a total gut punch. He’s lost a massive amount of weight, and his mobility is shot—you can clearly see him dragging his left leg. When I asked, he told me that leg started acting up just a few days ago. To top it all off, he weighed himself last night and realized he’s down 12 kg compared to when he was first admitted to the hospital. That’s a staggering amount of weight to drop in just two weeks of being hospitalized.

I was talking to my doctor, and she actually started rolling her eyes at me the second I asked my very first question about his condition.
I told him he’d lost a massive amount of weight and asked what he was actually doing about it. He claimed he was getting Supportan, which I obviously double-checked and found out was a total lie. So, the very next day, I went out and picked up some Supportan myself just to bring it to him—but he hasn't even started taking it yet because chemo has been absolutely kicking his ass for the last few days.
I asked her how big the lung tumor actually was, and she just told me she couldn't find that info in the system right now... which makes total sense, considering they only ran an X-ray.
They keep telling me over and over that I need to wait for the brain MRI results, insisting that getting those scans cleared is the absolute top priority right now.

September 11th – MR results are in. There’s a metastasis in the right side of the head—an expansive intraparenchymal lesion in the upper frontal gyrus measuring 40x28x36, plus a 4mm inhibitory lesion in the parietal lobe that seems to correspond to a second focal spot. After sitting down with the neurosurgeon, the word is that we're actually looking at just one single lesion, and luckily, it's operable.
The transfer to the rib is scheduled, but things are getting pushed back a bit because my kidney function is acting up.

September 13th—I’ve dropped another 5 pounds, which means I’m down 17kg in just three weeks. If this keeps up, I’m going to lose my mind and march straight into my doctor's office tomorrow for a serious talk. They actually started him on Glucern (that specialized diabetic formula) first thing this morning, so while I'm there, I'm going to grill them with a few questions. Most importantly, I need to know when they're finally scheduling the CT or PET/CT scans for his abdomen and chest.
Then she starts getting all worked up, questioning why he even needs a PET/CT scan when they already know exactly where the primary tumor is located. She argues that since he’s already being treated and they’re just waiting for his kidney function to stabilize before transferring him to Mayo Clinic for the brain metastasis, the extra imaging feels like a waste of time.
Things are going downhill fast. His balance is completely shot—he’s dragging his left leg more often now, and his speech is starting to slur.

So, I’m still scheduled for that CT scan of my chest and abdomen on September 18th. It’s the same day I have my follow-up appointment with the doctor. She mentioned there’s something showing up on one of my vertebrae, but she was pretty quick to point out that it isn't causing any pain and that it's caught in the very early stages—basically, she thinks it'll just resolve itself later on.

Sept 19 – Transferred to the Mayo Clinic. I just got his discharge papers, and the CT scan results are grim: "Solid mass infiltrating all three lobes of the right lung (92x86x69mm). A lymph node in the right hilar region measures 13mm in short axis and appears continuous with the primary mass. Lytic lesion at Th9, potentially indicating bone metastasis. Focal thickening of 19mm noted at the junction of the left adrenal gland lobes. Small pericardial effusion, max depth 9mm."

Sept 22 – Surgery day. They removed the brain metastasis, and everything went smoothly. It was such a massive relief.
I cornered the neurosurgeon to ask about the other lesion. He claimed the radiologist probably misread it. We went back to review the scans with him, and he insisted there was nothing there—that everything looked clear now.

Sept 25 – He’s up and walking a little, but by the next day, walking is harder and he's feeling numbness in his right leg. When they tried to remove his catheter, he couldn't urinate, so they had to put it back in. He went for an MRI of the thoracic spine—most of the vertebrae and the spinal cord are affected, and it's inoperable. The prognosis is that everything below Th9 will fail, including bladder and bowel control. It’s a total nightmare.

Sept 30 – Both legs have already failed him.

He’s coming home today. We’re prepping everything—medical bed, pressure ulcer mattress, the whole works.
Honestly, my dad is a rock. His positivity and defiance are unlike anything I've ever seen.

I can't help but wonder: could this paralysis have been prevented if they had done radiation while he was still at the community clinic between Sept 11 and Sept 19, before the transfer to Mayo? And was the leg issue caused by the brain metastasis or the spinal metastasis? After the Dexamethasone, his left arm regained function immediately, but then his left leg started giving out shortly after.

Has anyone else dealt with something similar? Is there any chance radiation or radiosurgery—maybe at a specialized center like MD Anderson—could help him walk again?

If you have any advice on home care, please, anything helps.

Sorry for the long post, I just needed to get this all out.

Dad really needed radiation for those spinal metastases. I don't understand why that wasn't ordered. That's usually how you manage those.
The Dexamethasone helped because he had cerebral edema from the brain metastasis pressing on his brain, causing seizures; the steroids knocked that down. The leg issue is likely due to the spine, though it could be complications from the surgery.
I don't know what else to say, but it feels like a case where overworked staff are spread too thin and aren't communicating well, and in the end, the patient—my dad—suffers the consequences.
Look for a second opinion; I'm afraid you won't have enough time once other pressures pile up. Ideally, you should look into transferring him to a dedicated facility so that if nothing else works, he at least gets high-quality palliative care.
And check with a place like MD Anderson to see if they can radiate the spine.

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