Amanda Anderson87 said:As far as I know, CRP is just an indicator of inflammation. My dad had elevated levels several times, and it was always attributed to some kind of inflammatory process.
I’ve been following your story, Zachary Howard2, and I truly admire your strength and persistence. On the flip side, hearing about your experience with the doctors and how they treat patients is just mind-blowing. In our neck of the woods, the situation is the complete opposite. The nurses on the wards where he stayed, the doctors, the oncologists, the family GP, the home health nurses... we have nothing but praise for every single one of them. Even now, while he's in the ICU—lost, his entire personality completely altered (shouting, cursing, making threats, pulling at oxygen lines and IVs when he isn't lucid)—the nurses and doctors continue to act with such humanity and professionalism. They do everything in their power to make him comfortable, and they go out of their way to reassure us not to take his outbursts personally, reminding us that it isn't him talking, but the disease that has absolutely wrecked his brain and everything else.
Hang in there, Zachary Howard2! Sending you all the strength in the world, and hoping your father-in-law beats this monster!
Thank you... we're fighting. There is no giving up. I will do everything within my knowledge and ability to extend his life. Everything has dragged on so much longer than expected. The doctor is coming by tomorrow, so we'll discuss specific nutrition to help him regain some strength so he can finally go home and start chemo. We've waited far too long already.
I’ve heard plenty of horror stories about Jordan, but until you live through it yourself, you just don't truly believe them. Which hospital was your father in?
Michelle Kelly4 said:Fiz, how is your mother-in-law holding up?
So far, she’s doing okay. Since the husbands are living out in the Midwest, we’ve been a little selective about what we tell her—kind of "filtering" the news. We're mostly just worried that since she's on her own there now, too much reality might take a toll on her mental state. Honestly, I’m not even sure if this is the smartest move, considering she'll eventually have to face the music. But for now, let her hold onto that hope—even if we know exactly how messy things actually are.
My father-in-law has finally livened up a little. They’ve adjusted his "diet," and he’s now getting a mix of glucose and something similar to Ensure, though it's loaded with all sorts of extra nutrients. As for the change in how the nurses act; she came by a couple of times yesterday just to ask, "Sir, is everything alright? Do you need anything at all, just say the word..." It’s honestly pathetic that you have to resort to threats (or grease the wheels with coffee and sweets) just to get them to treat a patient like a human being. His doctor is back from vacation on Monday, so we’ll finally get some clarity on a concrete meal plan. This whole process has been dragging on far too long; it’s time to actually start the recovery phase and get moving with the chemo. Can someone tell me about the CRP marker? Is it an indicator for esophageal cancer, or something else? I’ve been Googling it, and everything seems to suggest it’s just a sign of inflammation.
Honestly, I am getting such contradictory information; just now, my medical student was chatting with a friend of his who is a doctor over at the Mayo Clinic, and he happened to be reviewing my brother-in-law’s latest lab results. He mentioned the CRP dropped from 380 down to 100, which sounds like great news, though I haven't been able to find any reliable reference ranges for it anywhere—does anyone happen to know what the standard values are? The white blood cell count has also gone down, which suggests the inflammation is subsiding; there is no sign of MRSU, and the Candida issue has been resolved. They performed an X-ray, food transit seems fine now, and his muscle tension has eased up. Some are suggesting that his current issues with eating and movement are mostly psychological at this point, given that he just lies there staring into space. In any case, the labs themselves look promising considering the stage of the illness (it is Stage IIIB, after all), and they promised that both the professor and this other doctor would provide both me and my sister-in-law with the full reports and a complete breakdown of the blood work. She is heading over there now to verify everything.
I told my sister-in-law that we really need to lift his spirits and practically force him to eat (they are going to try solid food today) and get him moving, rather than just lying there paralyzed by his own thoughts. Regarding his discharge, he technically could come home, but they won't release him yet because he is still too weak; he needs to regain some strength first.
I have to admit, my sister-in-law is an absolute force of nature. She really stepped up at the hospital today because, as a nurse, she noticed things that my husband and I—being non-medical folks—completely missed. She ended up calling out a professor, the attending physician, the head nurse, and the floor supervisor. To quote her Facebook post: "What I witnessed on Tuesday and all day yesterday was simply too much to stomach. I went there first thing this morning... I stood my ground and laid everything out for them, point by point: the lack of hygiene, the inhumane treatment, the poor patient care, and the inadequate medical management. I spoke with the head nurse, the clinic’s head nurse, the hospital’s head nurse, the doctor, and finally the professor. Now they’re hovering around him and me because I have more than enough grounds to file a formal complaint and take this public. They keep talking about blood work results, but looking at the temperature logs, there's no record of when the blood was even drawn, nor is there any evidence of a needle prick site. I’m not naive. I demanded a CRP test, a CBC, a glucose profile, and others just to see if there's actual infection present. To start with, he didn't receive food yesterday, even though he heard during rounds that he was being prepped for surgery. Today, they're acting like they don't know what happened. I asked them if we were living in the 19th century, where a patient could actually die from malnutrition and hunger. They claimed he couldn't eat by mouth and couldn't use the gastrostomy. Well, of course he can't, because it’s been neglected and hasn't been used. He finally received food, vitamins, and everything else today, and he perked up immediately. They massaged him, cleaned him up, and changed his dressings. And they honestly expect me to believe that bandages stay on for 24 days without starting to fuse to the skin? On top of that, the janitor is handing out meals after touching infectious waste without any protection. It’s appalling. The drain wound is inflamed and oozing pus, and the redness on his back is inches away from becoming a pressure ulcer. To make matters worse, the sun is beating directly onto him through the window. They actually had the nerve to tell my mother-in-law that she should just bathe him herself—just a casual, arrogant suggestion. They're defending bloody, infection-ridden sites. Everything is a mess. And now, they're asking if we might want a television in the room."
Sorry for the long post, but this is genuinely horrific. She spent all of yesterday and today at my father-in-law's bedside. She’s making me feel guilty for not noticing these things sooner, but I don't know the medical side of things like she does. It feels like if you aren't a healthcare professional, they can literally kill a family member through sheer negligence and you wouldn't even know it.
Olivia Gray54 said:....And then Mom yesterday: she went for her hair, her manicure, did her makeup—she was a completely different person! Smiling, acting playful, just so she could be "pretty enough for the procedure."😁 When you look at her, you’d honestly think she was in the hospital for a cracked Rib, not cancer.
It feels like you're describing my mother... she always kept herself put together and polished; she stayed that way right up until her final days, never stepping out without fixing herself up, even when heading to the hospital.😁. Moments like these are heavy; they make me sad, yet they bring back such beautiful memories. It’s that bittersweet feeling.
I am glad to hear the surgery went well. I'm wishing her a speedy recovery so she can get back to the fight.
Olivia Gray54 said:Thanks everyone for the support. Honestly, I’m holding up surprisingly well given everything, and Mom is staying incredibly positive. We’re all right there by her side. 🙂 The surgery is tomorrow, so if all goes according to plan, we'll finally see what our next steps look like...
To be honest, if I weren't a believer—and if Mom weren't such a woman of faith—I don't know how we would be handling this whole situation. But seeing her stay so remarkably calm despite the prognosis is something else. She’s cheerful, she cracks jokes, and she’s still eating and drinking (as much as that Tumor Clinic diagnosis allows, since her appetite isn't quite what it used to be). When we're with her, we all try our best to keep her spirits up and steer clear of any negativity... I can tell it means the world to her, and it really keeps her going. 🙂 Please keep her in your thoughts tomorrow; she could really use all the good vibes we can send her way! 🙂
Zachary Howard2, hang in there—both you and your father-in-law. No matter how heavy things feel or how impossible it seems, try to stay positive and don't lose heart. I'll be praying for both of you. 🙂
Thank you, 🙂 Even though I wouldn't call myself particularly religious (I'm not exactly a regular at the local church), I find myself praying every day—not just for my own family, but for anyone struggling with illness. I will definitely be keeping your mother in my prayers too 🙂.
Angela Wright said:Ugh, 😢 That yellowing might actually be due to bile since he’s constantly vomiting. Well, at least you managed to get the Doctor to finally lay out the facts. Look, we need to bring the tension down a notch. What’s happened, happened, but it doesn't mean the game is over; we just have to take it one day at a time. We really need to find a way to lift his spirits mentally. I'm sure having his daughter there means the world to him.
I spent the entire day with him today... and naturally, she managed to find out that MRSA is also present (which is what I suspected, and probably why they have him in isolation), and she mentioned they are prepping him for surgery. It does offer a glimmer of hope for what comes next; yesterday, everything felt incredibly bleak. He's taken a massive psychological hit, but having his daughter around should help buoy him up a bit. He even told me not to visit every single day just so I don't end up catching MRSA myself.
It seems I'm seeing nothing but bad news here today, so I don't have much better to report myself.
I think I finally cornered the doctor yesterday with some rather pointed questions, and he finally laid it all out for me. The cancer has progressed to Stage IIIC; it has breached the esophageal wall and spread to the lymph nodes, including those near the stomach. Essentially, the advanced stage of the cancer is what's driving these current postoperative complications where they just can't get his digestive system functioning again. He mentioned they won't be discharging him until this is resolved, but who knows if that will ever actually happen... I have a nagging feeling he may never leave this hospital. Yesterday, they gave him a blood transfusion along with glucose and sodium chloride (if my memory serves), which seemed to bring him back to life for a moment, but by evening, he was vomiting something greenish again. They also switched his "food" over to Prosura. Also, my sister-in-law stopped by yesterday—she's a nurse, by the way—and she noticed some yellowing on his neck, which is definitely not a good sign. I'm assuming it’s related to the liver; I'm not sure if it's starting to fail. My mother had that same yellowish tint to her face when her liver began to shut down... they are running a urine culture today to get a clearer picture of the situation. In short, things are not looking good.
I find myself wondering: how am I supposed to come to terms with the fact that my other parent has cancer too—and the absolute worst, most lethal kind? The kind where the odds of recovery are essentially zero. My father passed away five years ago from lung cancer; he was hospitalized and gone within three weeks. Since he was a lifelong smoker, we understood why it happened, but this feels entirely different. My mother didn't fit any of the typical risk profiles for pancreatic cancer. She wasn’t ever sick, she never had reason to step foot in a hospital in her sixty years. She doesn't smoke, hasn't touched coffee in fifteen years, doesn't drink alcohol, and has no issues with diabetes or obesity. There is a family history of cancer, sure, but otherwise, nothing. Nothing at all. So, how am I, at twenty-five years old, supposed to find the strength to fight—to keep fighting? I've never been particularly emotional; I've always been someone who stands firm like a rock, but this is simply too much.😢
Dear Richard Martin5, I truly understand what you're going through. I lost my father—though it was to a heart attack, three years before losing my mother to ovarian cancer. Now, my father-in-law is battling cancer as well, so I find myself facing that same ugly reality all over again. Stay strong. You need to hold it together right now, but remember that whenever things get too heavy, you can always come back here and vent. I'm here for you.
Angela Wright said:Look, propolis or Ensure (assuming that’s what we're talking about) isn't going to fix his sphincter for sure—just be careful when giving him the propolis by mixing it into yogurt, otherwise, it’ll just stick to the inside of his mouth—but at least it might give him enough strength to get through a stupid procedure like this. He should probably ask if they can hook him up to some glucose. To me, Ensure doesn't exactly feel like a substantial meal. Maybe ask them if antispasmodics would help ease those spasms? They’d likely realize that themselves if it were an option, but it never hurts to double-check.
My sister-in-law is flying in from Sweden today (she works in the medical field). A friend of hers who works over at Jordan is visiting my father-in-law and mentioned he’ll likely head into surgery this Wednesday. We’re heading over to see him this afternoon, so we should hear more then. The issue involves the sphincter, and I know Native won't do much for that, but like you said, it might just help bolster him enough for the operation. I’ll ask about the glucose too, though I find it hard to believe they’re so incompetent that they wouldn't have provided it already. The Doctor who took over his care while he was under Medicare is a professor, so I assume someone competent is actually in charge, but there's certainly no harm in asking.
Angela Wright said:Fiz won't be hurt by probiotics; if anything, they'll help. Just make sure he knows you're giving them to him. You can easily mix them into his Ensure. Stores like Whole Foods carry all sorts—just ask the staff which would be best given the circumstances.
I’ll bring him both today, along with some Native propolis. Yesterday, the doctor told my husband that things aren't progressing well; even after attempting to manipulate that muscle again, there hasn't been much improvement. They're hesitant to suggest surgery because he's so frail—I suspect they're worried about the risks involved during the procedure. The whole situation feels grim. At this rate, he'll literally starve, even though we're trying to sustain him with Ensure. If the Native products and probiotics make a difference, wonderful. If not, well, whatever God wills. My husband is being realistic about it, but he still feels it's unfair—that he should at least be given a fair shot at further treatment.
Linda Patel21 said:Fiz, VSL#3 might be a decent probiotic for you. It’s a bit pricey, so maybe check with the doctor to see if he should be taking it. That antibiotic I mentioned earlier—I think it's called cyclosporine, but I can't say for sure.
Thanks, I'll ask the doctor. I'm terrified of giving him anything without professional advice just to avoid making things worse, but watching him fade away like this every single day... it's honestly gut-wrenching. 🙂
Angela Wright said:Just give him some probiotics in powder form—get them and mix them in. Antibiotics are going to wreck his system along with the diarrhea. He really needs to boost his immunity, too. You could also try giving him Ensure or Prosura. And please, bring him some blended homemade food... you know as well as I do that if he completely runs out of steam and falls into cachexia, all the oncological treatment won't matter, and rushing for an earlier surgery will have been for nothing.
Do you think it would be wise to give him Native propolis? I was thinking of opening the capsule and just giving him the powder. He is already taking Ensure. However, I'm not entirely sure if I should give him any kind of blended food at all, even if it is homemade, considering that specific muscle is blocking his food intake (I'll check with the doctor first).
Linda Patel21 said:Zachary Howard2, I am so sorry you're still going through this. Can he handle liquid nutrition? I live with Crohn's disease myself, so I know exactly how miserable it is when you can't eat anything and everything just passes right through you. There were times I was stuck on IV drips for two weeks straight because I wasn't allowed to swallow a single thing. They gave me pretty much everything under the sun just to keep me from crashing completely—even some heavy-duty backup antibiotics via IV. They told me if those didn't work, we were out of options. Honestly, I felt better after just the first bag. I know that stuff is expensive and hospitals hate handing it out, but I don't recall the exact name. It might be worth asking about.
Liquid food is fine, and he’s drinking water normally too; it’s just solid food that causes issues. I'll ask about the nutrition, even though they have already been administering some antibiotics through an IV. It seems strange that they have him in isolation. The nurses say there's a reason for it, but they won't give me any specifics, and in all the chaos, I completely forgot to ask the doctor. I suspect it might be some kind of bacteria (likely a hospital-acquired infection).
I am so sorry you're dealing with such a difficult illness, but hang in there. You are strong.
Angela Wright said:I honestly can’t believe this!😲 You'll practically have to ride him and give him a massage just to get him back on his feet. Is there actually any way for him to take probiotics, or is he really just vomiting everything up? Of course he's digging deep, man—he's losing electrolytes, food won't stay down... I really hope they have him hooked up to an IV, for heaven's sake... Life is just one mess after another... you try to rush everything to prevent things from getting complicated, and then something this ridiculous happens. Unbelievable.
They’re giving him an IV or feeding him Ensure directly into his stomach. He was throwing up all solid food because there was simply no passage further down. What kind of probiotics could you even give him in that state? I finally managed to corner the doctor today. He mentioned that they "cleared" that muscle twice, and now there's a passage. They'll check again tomorrow, and if nothing changes, they’ll look into surgery. Some doctor—who is usually quite rude, by the way—told me yesterday that his electrolytes and blood work are looking fine.
Sometimes I honestly feel like everything is just spiraling out of control. Instead of things improving for my father-in-law, it seems like they’re actually getting worse. It’s already been three weeks since his surgery. That specific muscle—the pyloric sphincter—is spasming and blocking the food flow. They tried to relax and dilate it, but it doesn't look like anything worked. My mother-in-law was visiting him yesterday and overheard something about a bacterial infection (I’m assuming one of those hospital-acquired ones) being the reason behind the diarrhea. He’s even had to start using adult diapers. I called him yesterday, but he could barely hold a conversation because he told me he couldn't even grip the phone properly.😢. I have this sinking feeling that we’re just digging ourselves into a deeper hole. The helplessness of not being able to do anything except badger the doctors to fix this is absolutely killing me. They mentioned that if it doesn't relax after two or three more dilation procedures, he might need surgery. Given how weak he is right now, I genuinely don't know if his body could handle another operation. What should I do?
James Patel79 said:Dear fellow forum members, I wanted to take a moment to thank you all for every single post, for the help you offer one another, and for every kind word and ounce of support shared here. Every so often, almost without realizing it, I find myself drifting through this forum, picking up a bit of advice and trying to apply it to my own life. I’ll be the first to admit that I can be quite lazy and stubborn; I know I should probably put more effort into integrating alternative therapies and dietary supplements, but after seven years of fighting my traveling companion—liposarcoma—I’m just plain exhausted. In any case, the genuine care you show one another is a significant thing; it heals just as much as any other medication or treatment could. So, thank you for that.
Keep fighting the good fight against this beast and don't back down.
We finally cracked the mystery behind my father-in-law’s constant vomiting; apparently, he developed a muscle spasm near his duodenum following his surgery, which ended up blocking his food passage entirely. They performed a gastroscopy today to get things sorted out. Now he’s dealing with some bouts of diarrhea, but hopefully, that’s just a temporary setback. It feels like it's always one thing after another; you can never catch a break where everything actually goes according to plan.
Angela Wright said:From what I can gather, it is, though I have no idea how much time it takes for things to stabilize. They reconstructed part of his stomach, and they likely removed the sphincter as well; since the path to the mouth is shorter now, that’s probably why he’s vomiting... honestly, I can't say for sure. It's a given that he should be eating smaller, more frequent meals... As for bacteria, of course, an infection like that could happen in a hospital setting, but it would almost certainly show up as a fever or via certain markers in his blood work... I feel so terribly for him. 😢 Can't your contact help you get some actual, concrete information?
Both my contact and his doctor are being completely useless. I managed to corner a nurse today, and she told me to call back around 2:00 PM once she catches the attending physician who took over his case. She was huddled in the nurses' station talking to someone else, but she won't tell me a thing and is playing this mysterious act. She just says, "You know we're looking after him, it's not like we aren't doing anything." I didn't even imply that—I just want to know what is actually going on. They are running another X-ray today to see where the food transit is getting blocked.