Posts by Terry Lopez18

wearyskipper20, I am so incredibly sorry for your loss.

It hits hard knowing my own kids won't get the chance to have my father as their grandfather, but one day, you’ll be able to sit your children down and tell them all about their grandmother—what an absolutely wonderful woman she was. Everything she taught you and the love she poured into your life stays with you forever; our parents truly live on through us.

Thank you all so much

I’ve just stopped by this country
to leave a little wink your way.
So that I might leave behind something
as light and fleeting as a trace.
And so: please, don't be sad.
I care far too much
about staying within your heart
as someone silly, yet strangely dear.

Yesterday, my father passed away after an incredibly long and grueling eight-month battle with glioblastoma.
For seven of those months, he was completely non-verbal and immobile, and by this past week, he was essentially just sleeping, barely able to open his eyes.
I want to thank everyone in this thread for the support, the comfort, and the sense of hope you provided; there were so many moments when I felt like I was losing my mind, and you all truly helped pull me through.

The thought of the funeral is what haunts me most right now, but I know I have to face it. There is some small peace in knowing that Dad is finally at rest and that he wasn't in pain during his illness—he seemed to be drifting in a world of his own. I am so grateful that I managed to kiss him and tell him he was my favorite guy with the best mustache just a few days before he left us. I don't know how much he actually understood, but I think he knew, because I saw the slightest hint of a smile tug at the corner of his mouth.

I wish you all so much strength. I will continue to read this thread every single day. Please stay brave and remain proud of yourselves and the ones you love. 🙂

ruggedfox11 said:It’s been quite a while since I’ve actually sat down to write anything around here.
Things are looking up on our end; his nausea from the chemo finally started to subside yesterday.
It’s getting a bit chilly out there today; the wind is starting to pick up quite a bit.

Does anyone happen to know if a husband who is both an oncology patient and a veteran is eligible for any kind of one-time financial assistance?

We’ve already received our one-time payment. If you're looking to claim yours, you'll need to get in touch with the Department of Veterans Affairs and submit all the necessary paperwork. Just keep in mind that the amount depends on your household income and how many people are in your family.

Does anyone here have any firsthand experience with the long-term care facility over in Boise?
My father has contracted a strain of bacteria that’s proving to be quite resistant to standard antibiotics. The pulmonologist was incredibly firm about this—she insisted he stay hospitalized until he is completely cleared, because if we bring that infection home, the rest of the family is at serious risk too.
I’ve heard people whispering that this hospital is basically the final stop before the end—that it’s where you go when there's nothing left to try. They told me they’d only keep him there for a month at most before discharging him back home. Honestly, I don't even know what to make of any of this.

I find myself checking in on this thread every single day, though I haven't had much to contribute lately. As for my father, his condition remains steady; the doctors managed to clear up the pulmonary embolism, so there are no more blood clots to worry about.

Thanks for the recommendation. That documentary was absolutely beautiful and eye-opening. It’s actually quite terrifying how we just don't talk about death at all, when we really should—after all, none of us can outrun it.

On another note, we finally brought Dad home, so Mom and I are handling his care now.
There's a certain sense of peace in doing this. I can see he's happy; he sleeps so soundly, even though he's completely immobile and relying on a feeding tube.
He’s dealing with pressure sores, and he's even developed a wound on his heel. But I've embraced it all; somehow, I've managed to find my footing. Right now, my only goal is seeing him sleep peacefully, knowing he's comfortable, full, and clean.

Everything has shifted for me. I've grown up through this, and this might sound terrible to some, but in a way (those who have walked a similar path will understand), Dad's illness was the best thing that ever happened to me. Not just for me, but for everyone around me. I regret that I didn't cherish life more before, or that my mind was always drifting somewhere else. But it's never too late for a second chance. Dad prepared me for life and taught me such wonderful things; he'll live on through me as long as I'm in this world. 🙂
He lived a wonderful life, surrounded by love, and he truly loved his family and those around him. I am just so grateful that he isn't in any pain.

I met a nurse at the hospital who told me her husband passed away from a glioma, and that he had been in that same state of immobility for three years. It left me feeling a bit shaken.

Dad ended up back in the ER a few days ago; he was struggling to breathe because of some edema. He’s stable now, but they’ve put him on a feeding tube, and that's how they're discharging him.

Should I be worried about the tube? And honestly, how many times can someone go through this cycle—the swelling spikes, the emergency room visit, then stabilizing—before it becomes too much? The ER has already stepped in to save him quite a few times.

Rachel Williams said:I second everything said here, word for word. If I had the chance right now, I would immediately reach out to a support group for families dealing with this, and I honestly think I’ll end up seeking psychotherapy sooner or later.
In the middle of that emotional whirlwind, my health just went straight down the drain. Even now that things have—let's say—settled down a bit, I’m still dealing with the fallout, and I suspect some of these effects might be permanent.

Rachel Williams, if you don't mind sharing, could you describe how your health took such a hit?
Because for me, over the last ten days, my heart has been racing terribly, I’m struggling to catch my breath, and I keep feeling like I’m going to faint. I think seeing my dad end up in the hospital due to an embolism just completely broke me.

I just want to find some stability, to calm down and accept this reality; I don't want to permanently destroy myself. How can I protect my mental health? When these symptoms start hitting me, I feel like I’m actually going to lose my mind.

Chloe Alvarez said:First off, I just finished reading the last two pages, and my heart truly goes out to everyone here going through this—or who has navigated it already. I found myself coming back to this thread because someone very close to me lost their mother to illness last year. I can see how they are slipping into depression because they feel helpless to fix things, especially with such grim prognoses, and they've started pulling away from everyone, including me. I try my best to set aside my own needs and emotions just to be there for them, but they keep distancing themselves, and I’m at a loss. They don't want to talk about it; there's no outlet, nothing. Does anyone have any real advice on what I should do? How can I help them get through this phase while they're still trying to manage their mom's care? It's just the two of them; they don't really have anyone else to lean on...

Honestly, just by showing up here to ask for advice, you've already done something massive. It shows how much you care and proves that your loved one has a rock in you.
It is incredibly difficult to articulate what someone needs when they are walking through hell, but the best thing I can tell you is simply to exist alongside them. You'll figure out what that actually looks like in practice as time goes on. Just be there. Don't disappear, don't pretend everything is sunshine and rainbows, and—as you might have already heard—don't fall into the trap of telling them "everything will be okay."
Try not to take it personally if they act strange or try to push you away. Don't let them shut you out entirely. They will likely try to distance themselves because they are hurting, and they might reject help because feeling vulnerable is terrifying, or they feel like no one truly understands the weight they're carrying.
Sometimes, silence is enough. Just share a quiet moment together, or maybe watch a beautiful documentary about space; those kinds of things soothe me and remind me that we are all part of something much larger than our current struggles.
Don't run away from their grief. So many people react to sadness by making jokes or acting like everything is fine just to avoid the discomfort. But at the same time, don't dig too deep or demand that they verbalize every single emotion. Once they realize you aren't going to run when things get dark and that they can actually trust you, they will open up.
Also, try sharing something that is weighing on you, or perhaps a sad story from your own life. It can create a bridge. It is often much easier to talk to people who are also navigating pain rather than those living in some perfect "La La Land" bubble. At least for me, that's how it works right now. It helps me realize I'm not alone and that human suffering is a shared experience.

ruggedfox11 said:Thank you!

It isn't any better with his immediate family either... He only has his brother and his mother. Both of them love to act like they're the smartest people in the room, and more importantly, they just crave being the center of attention. This guy is out there broadcasting to everyone that his brother is dying while he’s lying in a hospital bed... I mean, honestly, he looks absolutely terrible before even starting his first round of chemo. The guy used to be 6'7" and 265 lbs, and now he's down to 185 lbs... It was truly horrific to see him like that—sick, on oxygen, unable to eat; man, what cancer can do to a person is just devastating.
But his brother... Look, man, that's just not how you handle this. If it were her sisters, she would move heaven and earth for them. And to make matters worse, once he gets out of the hospital, both his brother and his mother started making up illnesses to the point where they were ending up in the ER almost every other night.

I draw my strength from my little one and from within myself—books have always been my first line of defense—but every single day I realize just how difficult it is to cope with this entire situation.

Yes, it happens all too often where family members weaponize an illness just to grab attention and play the victim.
Back in my small town of about 500 people, the only thing anyone talked about for months was my Dad's illness. I'd walk into the local grocery store and feel eyes following me, people pitying me, whispering things like, "He's a lost cause, he's dying, did you see what he looks like now?"
And then I realized they don't actually understand anything; it's just juicy gossip for them to chew on during their morning coffee.

Don't give those people even a second thought. Their talk is nothing but empty noise and mindless chatter. Just stay by his side and believe in him when everyone else gives up. When they start gossiping about how he's wasted away or how there's no hope left (which I sincerely hope never happens, but if it does), you have to be even stronger and look for that spark still shining in his eyes.

Every day I think about how frail my Dad is and how, given that diagnosis, he should have passed away a long time ago. But then the next day comes, and he's there, feeling BETTER AGAIN. He looks at me, understands me, eats everything I bring him, and lights up when he sees me.
It's as if he somehow clenches his tiny, weakened fist and says, "I'll show you all how strong I really am." 🙂

There was one sentence Angela Wright wrote several times that really inspired me: you won't realize how much strength you're hiding inside you until you're tested. Something like that, anyway—I'm paraphrasing. 🙂

ruggedfox11 said:Rachel Williams,

Literally, books and math (I’m actually tutoring right now)—they’ve always been my escape from reality. And as a mathematician, I simply refuse to acknowledge statistics.
I accepted the entire diagnosis at face value and threw myself into research, reading, contacting foreign clinics, and looking into other people's experiences. I've filtered through mountains of information, but... what really hurts is how people react to the disease and to me. They both look at us with nothing but pity. According to them, I'm "crazy" because I believe in an incredibly positive outcome, even though I am fully aware of what we are fighting. Look... if you are my friend or just an acquaintance, please, just support me. Don't give me that "I'm so sorry" line and then walk away. This isn't my first time facing a rough situation, but this is incomparable.

We are receiving treatment in Miami, and he just finished his first round of chemo. The doctor is great; he doesn't hide anything and speaks very openly. He avoids mentioning statistics because I told him immediately exactly what I think about odds and probabilities—plus, I have no idea what stage we were diagnosed at. From what I've gathered, the mass is massive—about 16x14x8cm—situated between the heart and lungs and around the bronchi, affecting both lungs. Everything else on the CT scan looks fine, except for some slightly enlarged lymph nodes.

In situations like this, you realize how emotionally illiterate most people actually are. They just lack basic emotional intelligence.

Unfortunately, it seems nobody ever taught them, and I honestly don't know how that happened. But yeah, they just don't know how to carry themselves in these heavy moments.

For three months now, nobody has even asked how Dad is doing, or even checked in on me. People might ask "how are you?" in passing, but that's it.

And now, get ready for the absolute peak of absurdity. His sisters STILL haven't come to visit him. They call me occasionally to cry over the phone, and then they actually have the nerve to complain to Mom and me that we aren't "caring enough" for him. Dad has been sick and immobile for four months already, and they haven't shown up once. Not only that, but they actually mentioned they won't attend the funeral because they want to remember him the way they used to know him. They don't want that mental image of him being frail, sick, thin, silent, and unable to move. It is incredibly selfish and immature behavior for women who are well over 55.

Honey, draw your strength from your baby. You don't need these people; they can't provide the kind of presence you need right now. Find your strength elsewhere. Don't even bother holding a grudge against them, because they simply aren't capable of doing better.
Trying to explain it to them would be a waste of breath.

Take care of yourself and the baby, and please check in here whenever you need someone to talk to.

Thank you all so much; these words truly mean more to me than many of the things I've heard in person. 🙂

I think the absolute worst part is that moment when Dad ends up in the ER, and I open his door not knowing what kind of scene I’m about to walk into.
Every single time, I try to hold onto the memory of how he used to be, but whenever I face him, he’s just a weaker version—a more immobile, much sicker version of my Dad.

Yesterday, they barely let me into the hospital because there's a flu outbreak going around and they aren't allowing visitors, but I managed to slip in for just a second. He was lying there looking completely frazzled, head slumped to one side, totally silent; he just stared at me, and even his eyes looked exhausted.

They told me to call the doctor tomorrow, but my stomach knots up every time I think about it. I’m terrified they’ll tell me he didn't make it through the night.

I know he’s suffering, and seeing him like this is gut-wrenching, but letting go is so incredibly hard. Even in this state, he’s alive, he’s here, and he still recognizes me. Every time I give him those herbal supplements I mix up, he opens his mouth and takes them. To me, that feels like a sign—like he still wants to fight.

But honestly, the hardest part isn't the illness; it's the people who only know how to ask "How are you doing?" or "Are you sad?"
I know they mean well, truly, but I am just so tired of answering those questions. Am I sad? If only it were that simple. Some moments I’m grieving, other times I’m furious, bitter, or utterly desperate. There are moments where I feel nothing at all, and then the guilt hits me because I find myself wishing it would just end. Sometimes I feel like I could dance, sometimes I feel like I'm dying, sometimes I feel like this whole nightmare is just a dream. I wake up in a cold sweat in the middle of the night, sometimes I dream of him smiling and happy, sometimes I just want to give up, only to find the strength to keep going again.

Maybe I'll finally be able to process all of this when someone else asks how I'm doing for the hundredth time.

Angela Wright said:Pulmonary embolisms are actually quite common in patients who aren't mobile. It’s certainly not a happy turn of events, but since they've already decided to treat him, there's a path forward.
I honestly think an embolism is what ultimately took my mother.

So, does that mean she passed away from an embolism?

Lawrence Ortiz6 said:My father passed away the night before last. Lung cancer, diagnosed about a year and a half ago. In the end, it was just patches and cannabis; he wasn't in pain and wasn't even aware (a blessing in this situation).

Lawrence, please accept my deepest condolences. 😢

My dad ended up in the ER today with a massive pulmonary embolism.
The doctor sounded optimistic, just saying, "We'll treat him."

I honestly don't know what to think—how dangerous is this for him? He had actually started looking better lately; he was even starting to speak some words again.

The worst part is, this doctor kept coming by for home visits saying his lungs were perfectly fine and just prescribed him some cough syrup.

Dear Minnie, I honestly can't wrap my head around the fact that your boyfriend has three primary tumors. If I'm understanding this correctly, they aren't metastases?
I truly admire your strength; you’ve stepped into an incredibly difficult fight, and I am sending you so much, so much luck. He’s young, which means there is hope, so keep focusing everything on strengthening his body.

As for my Dad, he is currently stable—though he is immobile and non-verbal, he is stable. We aren't pursuing surgery because they could likely only remove about half of the tumor, and even then, it would probably just grow back even larger immediately.
I don't know anymore; I've somewhat made peace with the worst-case scenario.
I'm just trying to find a way to live through this without falling into a pit of despair and dragging everyone else down with me. When things get too heavy, I just curl up on the bathroom floor and cry and cry. It helps release it.
I try my best to cheer Dad up, even though I think he's understanding less and less of what's happening around him. I'm just relieved he isn't in pain; it’s a small comfort, but it's all I have.

If he has to go, I just hope it's in the spring. I know how much he loves the spring. 🙂

Mark Ruiz4 said:We are dealing with a very similar situation here. My Dad's primary lung cancer has metastasized to his brain and bones. He can't manage anything on his own anymore, and now he's been diagnosed with pneumonia. To make matters worse, they sent him home from the ER just to die.
We feel completely trapped—we can't provide the level of care he needs, yet the hospitals won't take him. If anyone has any advice, please help. There isn't a single hospice facility in Zadar County.

After the Mayo Clinic released my Dad, leaving us totally caught off guard, we stumbled upon this hospital in Ogulin that actually has a palliative care unit.

Eventually, we moved him to a private care facility in Washington, D.C., but honestly, that was mostly because we didn't have a car and it was just easier logistically.

I’d suggest reaching out to them and explaining your circumstances. I realize it's quite a drive, but if you aren't in a position to provide full-time care at home and don't have the budget for high-end private facilities, this hospital is truly excellent.
Most private nursing homes are frankly terrible; they neglect their patients—I've seen it with my own eyes, and I've heard countless stories from others.
In my Dad's case, the hospital in Ogulin gave him a private suite. He was never neglected, never hungry, never thirsty, and never left unattended.

placidcobra7 said:They are planning to discharge Dad as a hopeless case. Liver necrosis...
We’ve started looking into renting a hospital bed, and we're trying to gather info on what benefits we can claim through Medicare. Any information or shared experience would be incredibly helpful—even just an opinion on whether this is even feasible, given that Mom and Dad don't live in a major metropolitan area. She is determined not to let him die somewhere else, but I’m honestly not sure if it’s possible to provide full-time care alone for someone currently requiring IV fluids and transfusions. How do you even manage feeding someone in that state?
The doctor wouldn't even give us a prognosis on how much time is left. Honestly, I am just stunned by how completely devoid of empathy everyone seems to be, from the nurses down to the doctors.

You might want to reach out to them:
http://www.hospice-usa.org/

Also, ask your primary care physician about home health nursing; you have a right to request that, and your doctor will know the protocol.

Is Dad able to swallow anything at all on his own? Usually, oncology patients are prescribed Prosure, a nutritional supplement designed to be taken through a straw. Your doctor might prescribe this, or you may have to cover the cost yourselves.
I'm not sure if Dad is mobile, but things like adult diapers and other supplies should also be requested through your GP—they can issue the necessary vouchers.

Regarding what you said about the lack of empathy, I truly understand where you're coming from. They sent my Dad home to pass away, too. He has a brain tumor and is now non-verbal and immobile; from day one, they had basically written him off.

Unfortunately, my mother is disabled, and since I’m still a student living in a rental, we had to place him in an assisted living facility. If you have any chance of finding a reputable facility nearby, please consider it. Caring for a patient in that condition is an immense burden.
Our family judged us heavily because people tend to view these facilities as "places to go to die," and my mother is being criticized simply because she doesn't want to shoulder the entire burden of caring for her husband.

"Disgusting" doesn't even begin to cover it; there aren't enough words in the English language to describe how much it sickens me.

Watching my father go through this illness has forced me to grow up fast. It’s taught me everything there is to know about the cruelty of life; I’ve met the absolute worst kinds of people, but also some of the most wonderful.
In just two months, he went from being a perfectly healthy, cheerful, and active man to a silent, immobile skeleton.

Sending you so much strength. Please keep us posted.

Rachel Williams said:You know perfectly well that you have to make that decision as a family... if I could find something like that for my mom (Stage IV metastatic adenocarcinoma of the lung), I would do it in a heartbeat if I could afford it.

Have you tried reaching out to clinics over in Europe? If all the treatment options here in the States have been exhausted, Medicare should technically cover the costs for medical care abroad.
The problem is, nobody ever bothers to tell us that; they just want to send us home to die.

I realize being a doctor in America isn't easy, even when they genuinely want to help. It’s not like they make the call themselves—it’s the board. My dad's oncologist is a wonderful woman, but her hands are tied; they cut costs everywhere, and no one wants to throw money at expensive treatments for someone who's already been written off.

Thank you for the suggestion. I think I'll end up taking him in for surgery eventually. What do I have to lose?

Dad’s condition has taken a turn for the worse, and his oncologist decided to halt chemotherapy altogether, sending him home to face the end.

However, I managed to find a clinic in Germany affiliated with a major medical university; their neurosurgeons are confident the tumor is completely operable and have scheduled the surgery for January 11th.
Dad is immobile right now, though he can still move his arms and legs. He’s lost the ability to speak—he can only manage "yes" or "no"—and he's coughing quite a bit. On the bright side, he’s eating well.

I realize it might seem insensitive to ask for your advice on what to do next, but I’m feeling lost and truly need some perspective. Should I go through with taking him for this surgery? How am I even supposed to gauge how much of the tumor they’ll actually be able to remove? They mentioned it would be an awake brain surgery.

boldridge3 said:Here I am again with more bad news. My mom passed away on Wednesday. She had come home from the hospital on Tuesday after finishing her radiation and everything, and then she just fell asleep overnight. To be honest, I didn't experience any overwhelming shock; I was expecting this given the circumstances. Every single day, I told her how much I loved her, and she told me the same. I even told her that when she passed, she could always "visit" me. I prayed to God that she wouldn't be in pain, that she wouldn't suffer, and that she would have the strength to stay with me and my sisters. I never prayed for her to get better because, frankly, I felt that was impossible given her diagnosis. I feel so incredibly peaceful yet strangely cheerful at the same time, simply because I know I did and said everything I wanted to before she left us. Truly, God saw fit to let her pass without pain or suffering, and He gave us a sense of peace. It might sound shameful, but I didn't shed a single tear at the funeral, nor did my sisters. In the evening, we sat together and laughed harder than we ever have before—it was an indescribable feeling. Mom always used to say she didn't want people mourning her, but rather laughing in her honor. I don't know if that’s unfair of us, but I just don't understand why there isn't that crushing grief right now; we are all acutely aware that she is gone... perhaps the sadness will hit later, along with the realization of her absence... I just don't know. During her illness, I gathered so many of her memories... from photos to videos. When we cut her hair after it started falling out from the chemo, I saved it all as a keepsake for when she's no longer here. I also recorded our phone conversations on my phone, so that in those moments when I miss her, I can just play a recording or a video and hear her voice again. I'm reflecting on everything, and I think some things just have to happen. I was unemployed for five years, and then just two months ago, I finally started working—Mom, of course, cried tears of joy. My marriage had been so difficult for ten years that I was ready to call it quits, but over the last two months, everything has turned around beautifully. So, I truly believe everything happens for a reason. To everyone fighting this disease or caring for a loved one: I wish you so much strength. Leave the rest to God, because no matter how we turn, He always has a plan for us.

Dear boldridge3, that idea about saving the hair... it's just beautiful. You've inspired me to save Dad's too, though his is short right now; I'll wait until it grows out a bit. 🙂

You will certainly cycle through emptiness, grief, happiness, and then grief again, but that’s just life—it's constant movement. What else is left for us to do but live, love, and mourn? I am so glad to hear your marriage is improving; perhaps you'll feel a sense of relief now and finally be able to devote yourself to the things you love.

We've decided to bring Dad home, so Mom and I will find a way to care for him, even though he's currently going through a phase of delirium and seeing things in the room that aren't there. I'm hoping a higher dose of Decortin will help clear that up.

Who should I reach out to for a wheelchair, a pressure ulcer mattress, and everything else we might need?
I'm not sure if it's better to use adult diapers like they do in the hospitals, or if he should use a commode?
He isn't mobile on his own, but with our help, he could manage. I just want him to feel a bit more dignified.