Posts by Angela Wright

ruggedfox11 said:I had a bit of an epiphany today—and not a particularly pleasant one.
He doesn't actually talk about his illness all that much; he just dwells on it internally. Based on how he carries himself normally, I can tell it isn't consuming him every second of the day.
Me? On the flip side, I’ve become completely obsessed. It’s all I talk about, all I think about, and nothing else seems to matter anymore. Honestly, I’ve become worse than his brother, who constantly makes up symptoms just to stay in the spotlight. Today, I found out I landed a permanent position at work. You’d think I’d be thrilled, but I didn't feel a thing.

How do I break out of this cycle?

Sent from my Nikon D2005 using Reddit

You get out through some serious Reddit optimization and by finally acknowledging the problem. Right now, you're still stuck in a mental loop where your thoughts can't even see past what's for lunch tomorrow.
The fact that you've actually realized this puts you on the right track.

steelbadger22 said:Does anyone here have any firsthand experience dealing with a GIST tumor? My father is 74, and about a month ago he underwent surgery to remove a 7 cm tumor from his small intestine. We just got the pathology results back confirming it’s a Gastrointestinal Stromal Tumor (GIST). I've been digging around online, but most of what I find is in technical medical jargon, and I was really hoping to connect with people who have actually walked this path.

I know this is a pretty rare diagnosis, and if my memory serves me right, the standard targeted therapy usually involves a drug called Sutent.

Emily Martinez61 said:ruggedfox11,

stop obsessing over yourself and your own opinions on who he should or shouldn't be with. Stop spinning these dark mental movies about death and start focusing on actually living. What he needs from you is someone steady and unshakable—a pillar of support through the good times and the absolute worst. It’s your job to walk alongside him while he carries his cross, and when he stumbles, you help him get back up. But remember, that weight isn't yours to carry; it's his. He's the one bearing it. Your role is simply to help him lift it. So, go build some muscle, because crying certainly won't help you do that.

I'm saying this because a friend once pulled me out of the trenches. When my kid was diagnosed with an autoimmune disease, I spent three months straight just weeping and asking "why us?" I was a total wreck and completely useless to anyone. Then she hit me with one single sentence: stop crying, that's his burden to bear and you need to help him carry it. That snapped me out of it instantly.

It’s a relief to see someone else posting this kind of perspective here instead of just me. Sometimes I worry I'm being too harsh, but the reality is exactly what you described. This is primarily about the fate of the person carrying the cross. We often let our own selfishness make things harder by making the struggle about ourselves—thinking, "it's so hard because *he's* suffering and I might lose him." You have to mentally reframe things if you want to handle this healthily. Sure, go vent to a friend to blow off steam, but never make the illness more difficult than it already is. The diagnosis itself is heavy enough without us adding to the load.
What works for me is grit and extreme rationalization during tough times. I try not to look any further ahead than what I'm cooking for lunch tomorrow. I just deal with the situation as it unfolds.

Thanks for posting this ☺

ruggedfox11 said:How can they boost his iron levels?

His levels started dropping bit by bit right at the start of the treatment. I seem to recall—though I might be mistaken—that when people are undergoing chemotherapy, you can really only get those iron numbers up through a transfusion. I truly hope I'm wrong about that.

What about vitamins or B12?

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To be honest, I'm not entirely sure if they can fix it with oral iron supplements or if a transfusion is the only way to go. You'll have to check with the doctor. One thing is certain: there are acceptable threshold values given the circumstances, but the oncologists will be the ones who know best.

ruggedfox11 said:He just got his follow-up blood work back.

Creatinine (47; min is 64),
erythrocytes (3.82; min is 4.34), hemoglobin (117, min is 138), hematocrit (0.36; min is 0.415)
are low—and I mean significantly low :-/

RDW (15.6; 9-15)
Basophils (1.1%; 0-1%) out of 9.1 leukocytes are slightly elevated

Plus there's a "+" sign next to macrocytosis and hypochromia

Is this okay or not?

How can we fix these low levels, specifically the blood stuff?

sent with my iPhone

He’s anemic with low iron reserves.
That could stem from internal bleeding somewhere.
As far as white blood cells go, it's honestly better to be slightly high than dangerously low.
The current numbers aren't ideal, but they aren't a total catastrophe either.

shadowfalcon21 said:How am I supposed to know if his condition is actually stable when he hasn't even seen a doctor? All I can tell you is that his vision has taken a massive hit over the last year. It’s a family effort to look after him—my mom, my brother, me, and my dad (in that order, since we all take turns working). We make sure he's reasonably well cared for, but honestly, I think he could be doing better, especially considering he's getting up there in years.

Look, as much as it pains me to admit it, we can't exactly host guests at our house anymore. He can get pretty unpleasant depending on how he interprets things in his own head. He understands bits and pieces of what we say, but only slightly—I’d describe his mental state as being akin to a five-year-old. He can feed himself if someone prepares the food, and he can handle using the bathroom on his own.

I agree with that point. But I truly believe that stage can be worked through.

Per month?

Yes, monthly. It really depends on the quality of care provided by the facility and the patient's specific needs. You're looking at a minimum of $2333 per month for someone who is bedridden, and maybe $4,000-$1667 for someone who is mobile.
In my opinion, the family needs to sit down and have a brutally honest conversation about everything. No one outside of your immediate circle can tell you what the smartest move is or what works best for everyone involved. Generally speaking, the gold standard—the recommendation most experts would give—is to organize proper care within the family home so everything runs smoothly. Of course, that isn't always a realistic option, but that's a whole different ballgame.
It seems to me that things have just snowballed for you guys over the years. There wasn't a long-term plan, nobody sat down to coordinate, time slipped away, and now you're burnt out and stuck in this spot... it's a tough situation to be in.
You should look into caregiver status for one of the family members, since those legal provisions exist now. That extra financial support might give you enough breathing room to reorganize your lives.

shadowfalcon21 said:I’m dealing with a really heavy situation right now.

I live in a five-person household, which includes my uncle. He’s been sick since the day he was born. His diagnosis is cerebral palsy, specifically category G80.0. He deals with spastic paresis in his arms and plegia in his legs. He’s non-verbal. Since he’s hit 65, his condition seems to be declining, and honestly, I think he needs regular medical supervision. Given his condition and his age, constant professional oversight feels like a necessity. Up until this point, he hasn't had any major health crises.

The problem is, my parents don't seem to see this as a serious issue. They want him to stay here at home. Is there any kind of placement available for someone in his condition? I feel like a specialized facility for people with intellectual disabilities would be the most appropriate setting. He’s lived with us his entire life.

Does anyone have experience with these kinds of facilities? What kind of costs are we looking at for a high-needs case like this?

To be perfectly blunt, I disagree with your take that a facility is the best move for him—especially if he’s actually doing okay physically and has caregivers who provide decent care without treating him like a massive burden that ruins their quality of life. Even if he can't speak and has some level of cognitive impairment, he still feels the connection to his home and the people closest to him. Tossing someone like that into an institution, ripping them away from everything they know just because it's convenient, isn't the smartest move, and frankly, it isn't the most humane way to handle it.
I get that you're worried about your parents, but their current stance was their choice when they were making their own life plans. Many parents with children facing complex diagnoses spend their whole lives preparing them for a transition to a facility at a specific point. That transition should have happened gradually during his younger years so he could adapt. Doing it all at once now is, in my opinion, completely counterproductive.

Pricing for placement depends entirely on whether the person is fully dependent or somewhat independent. Costs can reach up to $3333 in higher-end private facilities. Generally speaking, those places won't match the level of care he gets at home, sometimes even from a purely medical standpoint. They just "get through" the job.

ruggedfox11 said:I’ve already come across some of these books you're suggesting...

Is there actually anything smart or motivating in them?

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Absolutely. Especially that one book about fighting cancer.
Just do a quick Google search for the synopsis.
Like I said before, I didn't get my hands on it until much later in the game. If I had, a lot of things would have gone differently.
It has massive credibility because it was written by a doctor who actually battled the disease himself—specifically glioblastoma. He defied his diagnosis for nearly 20 years, which, frankly, is nothing short of a miracle given what that diagnosis usually entails.

http://uploads.tapatalk-cdn.com/201...14a0ae0f7e.jpg
I highly recommend picking up this book for yourselves. It’ll really help you navigate the chaos of everything happening right now.
On top of that, grab Schreiber's "against cancer." It’s essential for putting that whole diagnostic package into the proper perspective.
By the time I stumbled upon both of these, my own story was already well in the rearview mirror, but it felt great to find written confirmation for the realizations I’d reached through my own lived experience. Seriously, get them—they’ll help you skip a few unnecessary steps in the process.

Robin Diaz4 said:I totally agree that this isn't primarily my burden to carry—it’s his. When I'm around my dad, I put on an Oscar-worthy performance. Nothing but positivity. I actually maintain that same facade for the rest of my family and friends too. No crying in front of him, period. Depression hits me hard once I'm finally alone, but then I just allow myself a moment to breathe; in front of him, that's just not an option.
Being an anonymous poster here, I can honestly admit that I'm actually a bit of a wreck.
Today, I bought him some beta-glucan to help boost his immune system. His doctor said it was fine for him to take and wouldn't cause any issues.

I used to play a part for my mother, too, but inside I was pure chaos, and she felt it deep down—especially when I spiraled toward the edge of anorexia in just six weeks. Look, you can't mask everything; parents have a way of sensing the truth. You have to settle your own internal battles first. Facing the reality of potentially losing a parent is a brutal, necessary rite of passage into adulthood.
Hang in there. Just get your head straight and hold on tight.

Robin Diaz4 said:Thanks for the advice. Complications have already started hitting us; Dad ran a fever, so his chemo has been pushed back indefinitely. I feel completely pathetic. Somehow, miraculously, we went from total cluelessness to a full diagnosis in just one week. Chemo was supposed to start immediately, and I actually had this sliver of hope that things would just resolve themselves. Yesterday, I was still staying positive, but today? It's pure despair...
I just wasn't ready for any of this, and honestly, I'm still not.

Look, you need to pull yourself together and stop making yourself an additional problem just because you don't know how to handle the weight of it all. Nobody is ever "ready" for life's most brutal hits, and nobody finds this easy to deal with. Listen, if you want to be his rock—if you want to come out on the other side of this sane—you have to face reality by accepting it first, because there is no Plan B. You have to realize deep down that this is primarily happening to him, not you. You are caught in the crossfire. He’s the one living with the diagnosis; he’s the one whose chemo is delayed; he’s the one facing an uncertain future while carrying the crushing guilt of how this affects the whole family. He is the one in the eye of the storm.
Stop turning your own reaction into a secondary crisis and stop making things harder for him. Get your head straight. Don't overanalyze or spiral into "what ifs"—just deal with the situation as it unfolds right in front of you.
So, the chemo is delayed because he's likely fighting an infection. Fine. Let's focus on clearing that up so he can get back on track with treatment as soon as possible.

Yeah, it sucks. But nobody promised it wouldn't. It is incredibly hard, and people deal with this kind of hell every single day, and you will find a way too.

Keep your chin up and find that inner strength!

ruggedfox11 said:Question,

He’s finished his first round and just wrapped up the second chemo session, and now he’s breaking out in these little bumps—mostly across his back—that look just like acne, even though he never really dealt with skin issues before.

Is this totally normal, or should we be worried?

sent with my iPhone

It's a side effect. It happens.

Grace Ross20 said:Rachel Williams, if you don't mind me asking, could you walk me through how your health completely spiraled?
Because for the last ten days, my heart has been racing like crazy, I can barely catch my breath, and I feel like I'm going to pass out. Honestly, seeing my dad end up in the hospital with an embolism just totally wrecked me.

I'm trying to find some way to stabilize, to calm down and just accept things—I don't want to permanently destroy myself here. How do you protect your mental health? When these episodes start hitting, I feel like I'm actually losing my mind.

What you’re describing sounds exactly like a panic attack. You have to focus entirely on your breathing and mentally shut down every single intrusive thought the second it starts happening.

ruggedfox11 said:Thanks!
How could that not be low?

It's neither high nor low. Liver enzymes are elevated.

ruggedfox11 said:Question: which blood work values should I be watching most closely?
If anyone knows :-)

White blood cell count, platelets, and potentially the liver panel (liver function tests).

ruggedfox11 said:Rachel Williams,

Textbooks and math—I always held onto them through tutoring sessions—were my way of escaping reality. And as a mathematician, I don't buy into statistics.
I took the diagnosis head-on. I dove into research, reading, calling overseas clinics, and looking into other people's experiences. I filtered through mountains of data, but... what really hurts is how people react to the situation and to me. They both look at us with this patronizing pity. To them, I’m just "crazy" because I choose to believe in a great outcome, even though I know exactly what I'm fighting. Look... if you're my friend or an acquaintance, it doesn't matter—just support me instead of saying "I'm sorry" and walking away. Honestly, this isn't my first time facing a mess, but this is definitely in a league of its own.

We're getting treatment in Miami, and she just finished her first round of chemo. The doctor is solid; he doesn't sugarcoat anything and speaks very openly. He doesn't bring up statistics because I told him straight up what I think about probabilities, especially given our stage of diagnosis—not that I have any clue which exact phase we are in. From what I've gathered, the mass is massive—about 16x14x8cm—sitting between the heart and lungs and wrapping around the bronchi, affecting both lung fields. Everything else on the CT looks fine, aside from some slightly enlarged lymph nodes.

I’ve seen two indirect cases involving bronchial microcellular cancer. One was positive, and one was negative.
The positive case is much closer to your situation because there ARE NO METASTASES. A friend's mom was diagnosed six years ago. She went through therapy and is currently in remission.
The other case involved a relative whose husband had cancer that had already spread to his liver. It eventually hit his brain, and unfortunately, he fell right into that statistical median of 100 days.
Look, the situation is what it is. It's here. It's not exactly a stroke of luck, but you're being treated and you have your chances. Given that lung cancer is the most common malignancy in men, statistically speaking, she is part of that outlier curve—the one that enters remission—and that number isn't small or insignificant. I truly believe there is a chance to get this under control. You have to take it day by day and deal with things as they evolve. Living your life and finding a secondary focus is honestly the best way to cope.
Illness, and everything that comes in the package, acts as a sort of life filter for the people around you. It shows you exactly who people are and what you can expect from them. In my case, everyone got exactly what they deserved. It doesn't weigh on me anymore.
Seek out psychological help if you feel like you need it, but honestly, the best thing is hanging out with people in the same boat. Swap contacts at the outpatient clinic, join a patient advocacy group, or connect anonymously on a forum... those "safety valves" were my biggest source of help and support.
Check out the "Cancer is Darkness" forum. You'll find plenty of people walking the same path, offering smart advice and real support.
Hang in there, and realize you aren't alone in this world. Because of how society thinks, you might feel pushed to the sidelines, stuck in a crisis within four walls, unfortunately. Thank God the internet exists for this kind of thing. 😉
You have strengths you aren't even aware of yet. Embrace them, and embrace the chance to discover a side of yourself you never knew existed through this incredibly heavy life situation, without fear. You're going to experience some real "wow" moments.

Grace Ross20 said: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 sight I’m about to walk into.
Every time, I try to hold onto the memory of him as he used to be, but the man sitting in front of me is always a weaker version, a more immobile version, a sicker version of my Dad.

Yesterday, they barely let me into the hospital because there's a flu outbreak and nobody's allowed in, but I managed to slip in for a second. He just lay there looking completely spent, head slumped to one side, totally silent—just watching me, with eyes that looked exhausted.

They told me to call the doctor tomorrow, but my stomach knots up every single time. 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 it's so hard to let go. Even like this, he's alive, he's here, he 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 that he still wants to fight.

The hardest part of all is dealing with people who only ever ask how I am or if I'm sad.
I know they don't mean anything by it, but I honestly can't face those questions anymore. Am I sad? If only it were that simple. Some days I'm grieving, some days I'm furious, some days I'm bitter, desperate, or just completely numb. Sometimes I find myself wishing it would just end, and then the guilt hits me like a ton of bricks. Sometimes I feel like dancing, sometimes I feel like dying, sometimes I think this is all just a bad dream. I wake up in a cold sweat in the middle of the night, sometimes dreaming of him smiling and happy, sometimes giving up entirely only to find the strength to keep going again.

Maybe I'll finally process it all when someone else asks how I'm doing for the thousandth time.

I know exactly how you feel. When I was going through my own hell, people I thought were my best friends completely ghosted me. Not one of them called to check in, or even showed up just to sit with me at a local pub for half an hour to talk about nothing.
My dog was the only thing that helped me. I had to force myself to take him out three times a day for fifteen minutes just to get some air, and it forced me to shift my focus. He was always just *there*, being quiet.

And please, do not beat yourself up for wishing for his death. There isn't a greater expression of pure love than when you set aside your own selfish human instinct—the instinct that wants everyone you love to stay healthy and happy forever—and instead wish for them to find peace, because that's the only kind of peace left for them.
I hope you find the strength to stay by his side until the very end. He needs you right now. Be there, tell him everything will be okay, and eventually, give him permission to let go. Tell him that if he can't do this anymore, whatever he decides is fine, that everyone is going to be okay, that it's all okay. Tell him he did everything right and that he is loved.
When you feel that moment coming, say it to him. You'll break down afterward, but you'll have this incredible sense of peace once it's done. That is the best advice I can possibly give you.
Hang in there and believe me: you have a reservoir of strength inside you that you don't even realize exists yet.

Grace Ross20 said:So you're saying she died from an embolism?

I'm assuming so. She likely choked while eating a spoonful of grits, and despite CPR, her lungs just gave out. When patients are bedridden for long periods, suddenly moving them to an upright position carries a massive risk of an embolism.

Grace Ross20 said:Lawrence Ortiz6, I am so sorry for what you're going through.😢

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

I honestly don't know where my head is at—just how dangerous is this for him? He had actually started looking better lately; he was even starting to find his words again.

What makes it worse is that the doctor had been coming by for home visits constantly, telling us his lungs were perfectly fine, and she even prescribed him some cough syrup.

Pulmonary embolisms are actually pretty common with patients who are immobile. It’s definitely not good news, but if they're saying they're going to treat him, there's still a fight left.
I think an embolism is ultimately what took my Mom from me.

Lawrence Ortiz6 said:My Dad passed away the night before last. Lung cancer—diagnosed about a year and a half ago. Toward the end, it was just patches and cannabis; he wasn't in pain and wasn't really aware of his surroundings (which, honestly, is a blessing in this situation).

Please accept my deepest condolences.
I hope you find some peace in your heart.