It has been quite some time since I last checked in here, and honestly, I am struggling to process everything I see. What on earth has been happening lately? Just a few hours ago, my best friend lost her father to that awful disease. Angela Wright, Carol Ramirez, please accept my deepest condolences... my heart truly goes out to you both during this time. Angela, you have always had such beautiful, comforting words for everyone in this group... but now you’re faced with the hardest task of all: applying those very words to yourself. I can see you’ve already begun to do just that. I truly admire the incredible strength you’ve shown—you have it, and you will continue to have it. You are a pillar of strength and an inspiration to us all. It has been exactly two months and two days since my own father passed away... and I still find myself unable to believe he's gone. And that cursed phrase... "never again"... I still catch myself expecting to see him, waiting for him, calling out to him, or just wanting to talk to him. The other day, for the first time, my mom and I actually shared a laugh while remembering him. I suppose I am slowly finding some peace. I feel so incredibly grateful that we had him and that we shared such a wonderful bond; after all, there are people who live alongside perfectly healthy parents yet act as if they don't even exist. I still haven't managed to find that webpage you all keep mentioning... I'll try looking for it now. If there is any way my knowledge can be of service, I am more than willing to help.
Angela Wright said:Honey, you really are strong. Everything you’re feeling right now is genuinely healthy and natural. You're grieving, and that is a process; you’re likely reaching its peak right now, after which things will steadily improve. Life simply moves forward, carrying these hardships along, and you will find the strength to finally let your father rest in peace within you. He will live on in your memories until you meet again. Now, just allow that grief to pour out of you. It will bring you immense peace and tranquility, and eventually, you’ll look back on your dad with joy. Try reflecting on the quality of his life rather than its length. For me, that perspective brings great peace and makes accepting my mother's illness easier. She had a beautiful life, filled with the love of family and friends, full of laughter, and she never had to walk through grief alone. Instead of asking "Why her?", I started asking "Why not her?"... she was a human being, and these things simply happen to people. If it hadn't been her, perhaps it would have been some other woman with a small child and no family support or love. You know, I actually realized God's mercy through things like this. We all have to leave this world eventually.
My grandmother raised me until I was six. I only saw my parents every other weekend because they were working in Chicago while I stayed with my grandma and grandpa in St. Louis. My grandmother was like a second mother to me, and every break from school, I traveled to be with her. She died practically in my arms. It was incredibly hard to accept, but everything unfolded exactly as I described. Often, I find myself remembering an anecdote about those who have passed and I actually start laughing. Seriously, can dead people actually make you laugh?😉
😘Take care,
Dear, thank YOU and everyone else—thank you all for being here. Today was the first day that passed where I only realized this evening, upon arriving home, that for several hours almost the entire afternoon, I hadn't thought about my wonderful father once. You have every right to be proud of being his child... and he will forever be a part of me... A little bit of good news... today I had a patient who, twenty years ago, underwent surgery for breast cancer with lymph node metastases—radiation, chemotherapy... and today, twenty years later, she is a healthy woman living as if nothing ever happened... and another patient from five years ago had lung cancer surgery and is doing perfectly fine... so there is hope, people... a positive outcome is always possible...
Greetings to all my fellow fighters. I want to express my sincere gratitude for the compassion I find here. I read your posts constantly, and please know I am with you every step of the way. However, I have been working so much lately just to... well, to run away from the grief and pain that grips me. And that is the worst part: it intensifies with every passing day. That initial surge of adrenaline has faded, and while we somehow managed to endure those first stages, everything feels increasingly difficult now. Is this normal? It feels as if I am only just realizing he isn't here. Sometimes, I catch myself mid-sentence, about to say something to him, only to be struck by the realization... never again. The reality that he is gone is simply unbelievable. And then comes that senseless question: why him? I never once wasted my energy asking such things during his illness, but now? Now I feel a simmering anger—why did he have to get sick, and why did he have to leave us? There aren't enough words to describe this state of being. I feel as though I will never truly accept that he is gone; as you can tell, I cannot even bring myself to use the word "died." Thank you all for being here, and thank you to those who started this community. I share these most intimate thoughts with you because it feels as if you are the only ones who truly understand. To everyone else, I am the picture of strength. They all comment on how well I am handling everything, how resilient I am... but the truth? I wake up in tears, and I go to bed in tears.
My dear friends, I’m a bit out of the loop here... Sadly, yet another soul has lost their battle with this cruel disease. My father passed away on Sunday, October 21st, 2007, at 1:30 PM. The tears just won't stop flowing, even though my mind still refuses to grasp the reality that he's gone and I'll never see him again. I can't bear to picture him lying in bed, looking so helpless; instead, my eyes see him constantly as he was—out in his wheelchair with our little dog, wandering through the city while we grabbed coffee together. There are just so many shared memories, so many beautiful moments, and somehow it feels like he still lives on within me... Even though every passing day feels heavier and harder, I don't regret a single thing. I gave everything I had. I stayed by his side until the very end, and now I am staying by my mother's side, day and night. He was special. We had such a unique bond, and I... well, I was always his little snowflake.
My mother has a nurse visiting three times a week, and we pay out of pocket for daily home care on an hourly basis. We managed to coordinate the schedule—though I have no idea how we pulled it off—so that the care covers half the day, meaning she’s rarely left alone for more than three hours at a time. Perhaps it isn't such a bad idea to start there; the information tends to find its way to you eventually.
How did you manage to secure a caregiver that you pay for yourselves, and what exactly does her role entail? In our case, we received nursing services through Medicare for daily care, but we actually need someone who can sit with him for just a few hours here and there.
mistyranger4 said:Hi everyone. Even though my husband isn't battling cancer, I find myself constantly stumbling upon advice meant for those dealing with malignancy. My husband is fighting ALS—a devastating neuromuscular disease—and unfortunately, things are taking a turn for the worse. To make matters more complicated, it’s just the two of us. As my workload increases, leaving him becomes an impossible task because he is completely immobile. So, I am turning to you for guidance. Does anyone know how much leave one is actually entitled to when caring for a family member? I was browsing the Medicare website and found this: You are entitled to paid leave to care for an insured person—specifically a spouse living in your household—for a maximum of 15 working days per established illness. After calling Medicare to ask about extended leave, I didn't get a single satisfying answer. They flatly refuse to tell me if, after these 15 days expire, I have any right to claim leave again next month or in the future. They just keep repeating that I can use those 15 days while the illness lasts, without ever clarifying the specifics. Has anyone dealt with this? This is my first time using these days, and I need to know the intervals allowed before I can apply again. I’ll try to stretch things out by using some vacation time and some unpaid leave... but what comes after that? Please, if anyone has been in a similar situation, help me understand my rights!
Based on the laws as I last understood them—which was about a year ago, so I can't guarantee nothing has changed—the limit was 12 days. However, in extreme circumstances, if a primary care physician decides the situation is dire enough, they could refer you to a commission, which might grant you up to 30 days. After that month is up, you would be eligible to use the benefit again. In other words, if the commission approves 30 days, you'd likely need to work at least a month before you could tap into it again. Alternatively, your doctor could potentially sign you off on your own medical leave—say, if you develop spinal issues—allowing you to be out for a month. Does anyone happen to know a woman or a nurse available for private hourly work? Just an hour or two here and there? The situation here has become unbearable. I haven't slept in 72 hours trying to give my mother a break. We are doing everything humanly possible for him; we never leave him alone for a second, yet he just screams that we are harassing and tormenting him. Today was horrific. He’s spitting out his pills, refusing food, and screaming that we are feeding him poison and trying to kill him. Then he tries to get up to go outside, but we have to keep him confined to the bed, and then he calls my mother a whore (please excuse my language). Just imagine—she has spent 35 years by his side, and all she gets in return are these atrocities. What kind of disease is this? No matter how many times you explain that it's the illness talking and not him, it still cuts deep. It’s hard not to let it hit you. I fear that moving him into a private care facility is becoming inevitable. Does anyone have experience with this, or perhaps know of a decent facility on the West Side of New York City?
My mother and I have discussed the idea of assisted living, but even though she knows him better than anyone, we just can't bring ourselves to do it. I might be able to cope with the decision, but her? Even though she understands that certain things are inevitable, she insists she could never forgive herself if we placed him there just to let him die. It’s incredible how the exact same thing is happening with my dog. He and she were inseparable, but now that he's bedridden, she won't even go near him—even when he calls for her. "Puppy, puppy!" he begs, but nothing. She won't budge. It's only when I'm sitting by his side that she'll briefly squeeze in between us. He used to take her out on walks every single day, and now she just lies there sleeping; she's such a sweetheart. I don't know what's bothering her... I suppose these creatures feel things quite intensely. As for his care, we truly provide everything possible. Mom, especially, jumps at his every move, doing everything in her power to make him comfortable. And then, when he snaps that we're just harassing him and won't leave him alone? That's what hurts. Most of the time, you know he isn't himself... but when it becomes a constant cycle, you eventually start to forget.
Greetings to all fellow warriors! My heart goes out to everyone dealing with the loss of loved ones; at least we actually understand one another here. My father’s condition has been catastrophic over the last ten days. He doesn't know anything anymore—he can't even speak a single sentence normally. He only recognizes my mother and me. He has no idea what time it is, what he’s eating, if he has even eaten, or how to ask for something as simple as a glass of water. Yet, despite this, he just talks and talks, rambling about nonsense that makes zero sense. He’s constantly trying to go somewhere; when we tell him he can't, he screams that we are harassing him. It’s horrific. I am at a total loss. He has about five or six tumors on his brain, each roughly an inch and a half in size, and it is honestly baffling to me how he keeps talking. He even has the energy to sit up. From what I've gathered, most others experience a sort of "dulling" or cognitive decline, but not him. He doesn't sleep at night, and rarely during the day, and when he does, his breathing is incredibly irregular. We can't leave him alone for even a second, and my mother is reaching her absolute breaking point. Does anyone have any advice on what to do? Thank God he isn't in physical pain, but it is killing me that he knows nothing... absolutely nothing... hugs to you all.
Christian Wood63 said:I managed to track down Boswellia in pharmacies over in Mexico; I picked some up in Belgrade at places like Super Ver or Mercator, much like finding aspirin locally... I didn't have any issues with it. I haven't been administering much lately, given my mother's supposedly "stable" condition over the last two months. As for the mannitol—well, it can be dangerous. If I recall correctly, my mother ended up in pulmonary edema back in May, which we barely managed to resolve. It looks like it was actually a combination of edema and pneumonia because a single bottle caused absolute chaos after five or six days. Naturally, one would use a Braun line, or an IV, as a solution for long-term administration. I am aware that dexamethasone resolves certain issues, but it is far too potent and incredibly difficult to wean someone off of. Consequently, I haven't given any to my mother, even though I have some at home. It isn't easy dealing with something that lacks a favorable prognosis... not even when you are a doctor. It’s no trouble for her to make a trip to Belgrade if they don't have it in Washington, D.C., or anywhere else in America. I will check first thing tomorrow morning to see if they have it nearby. Brufen is frankly too weak for all of this, though it can occasionally help. I've read quite a bit online about Boswellia, so I've been administering it cautiously. One shouldn't give it in small doses due to its strange effect on tumors. It is only effective in larger doses, specifically more than two grams... I'll find a few websites for you.
Mannitol certainly didn't cause the pulmonary edema; it is a powerful diuretic in its own right, used here for major open-heart surgeries... so I fail to see why you are linking mannitol to edema. On the contrary, it absolutely drains the system. And what exactly is this Boswellia supposed to be????
I have tried tapering my mother off Dexamethasone several times now, and it always ends in disaster—her neurological symptoms flare up so violently it’s terrifying. One day we couldn't even wake her up; that wasn't from the taper itself, but because the edema worsened. The only thing helping right now is
We’ve started taking Silmarin capsules, which are a natural liver support. We also cut the Phemiton down to half a tablet.
Honestly, I have no idea what we are doing anymore. We are just stumbling around in the dark, following some internal logic that doesn't even make sense. I’ve actually started questioning this Tahitian Noni business. We are going to stop using it for a while to run more liver tests and see if there is any actual improvement. Where can one even find that boswellia extract? Is it this:http://www.super-smart.eu/article.pl...n&fromid=GG132
Hi everyone... I read your posts religiously. It feels like we are all walking through the exact same fire... at least we’ve learned who our real friends are and who isn't. You know how they say "hard times reveal true character"? Well, it's not just friends—even my mother-in-law won't even ask how I am or if I need anything. But the second her own mother runs a fever, she’s calling my cell phone demanding to know what to do... I won't even waste my breath on that. My father is getting worse by the day. He has no strength left to even sit up, and the hardest part is his refusal to accept help. He wants to do everything himself, but when he realizes he can't, he starts cursing. One day he's like that, and the next he just sleeps—won't wake up, won't eat... now he won't even take his pills. I disagree with tapering off the Dex; based on how I monitor my father, he actually does better when the dose is increased. I get lucky sometimes and can give him Mannitol—not that I can do it myself, since his veins are impossible to find, but a friend of mine who is an anesthesiologist drops by occasionally to administer it. I have several vials of Mannitol on hand; if anyone knows a nurse who can handle the IV work, I'll give you a few bottles. It really helps my father; somehow, after the Mannitol, he comes back to life. He’ll sleep all day, but the next day he actually gets out of bed and stays lucid. A primary care doctor can order Mannitol through the clinic, though you might have to pay for it if they won't provide it for free... but sometimes I wonder if I'm doing the right thing or if I'm just prolonging his agony out of sheer selfishness. Even my mother asked me whether we should give it to him or... but I can't just sit here and watch him suffer. Sometimes he even asks me when he's getting his Mannitol, and of course, I give it to him. You were right to say we are stumbling in the dark; it is tragic that in this day and age, we have to fend for ourselves like this. I called his oncologist, and do you know what she told me? She suggested we just put him in a facility if we can't handle it at home. I practically slammed the phone down on her. If only I could ask her how she would feel if it were her own family. I am just terrified that my father will pass away while I am not there. I am with them every single day, but I still have to work. Every time the phone rings, my heart stops. And it goes on like this, day after day. Don't misunderstand me, but sometimes I just wish it would all be over so he wouldn't have to suffer anymore...:
jadepuma662 said:...I am not entirely sure if this still fits the scope of this forum, but as I mentioned previously (page 43), my mother has a Klatskin tumor, and here is what transpired (discharge summary from Mercury Hospital):
DISCHARGE SUMMARY FROM MERCURY HOSPITAL
Dx: Obstructive jaundice Cholangitis Op: Resection of hepatic and common bile ducts, followed by connection to the duodenum hepaticojunostomisis SEC Roux Cholecystectomia and gallbladder removal (04.09.2007)
Dx: Diffuse peritonitis. Partial dehiscentio hepaticojejunostomy. Sepsis OP Op: Relaparotomy with anastomosis suture. Abdominal lavage. (06.09.2007)
Dx: Hemorrhagic shock. Perforated duodenal ulcer. Sepsis OP Acute renal insufficiency. Op: Relaparotomy. Suture of perforated sites. Hemostasis (11.09.2007)
...Cholangitis—according to the internet, it is an acute infection of the bile duct that mimics a tumor. (Or something to that effect... but it is almost certainly an infection)
..By the way, just five minutes ago, I spoke with the Deputy Director of the hospital in San Diego, who insists it was extremely difficult to distinguish whether it was a tumor (cancer) or an infection... even after they performed the endoscopy, blood work, MRI, and whatever else they measured... I simply don't understand it. Incidentally, that conversation cost me 500 dollars... in cash...
...Our doctor in San Diego provided the initial diagnosis of Klatskin tumor, which led me to research the condition online (and here). I subsequently visited him at his private clinic to see if he truly believed it was indeed that specific tumor. He agreed and suggested that an MRI would be beneficial to provide the surgeon with a clearer view.
...In the days leading up to the scheduled MRI, I told my mother she had cancer.
...The day we underwent the MRI was also our final day at the San Diego hospital. During a visit with the doctor right before the MRI, she mentioned the cancer, and the doctor noticed that I had already told her... we head off for the MRI, and then return to the waiting room... After some time, the doctor calls her alone into his office. Then, after a while, he calls me in as well. This is where a new narrative emerges, in which they tell her she doesn't have cancer, but rather stones that require urgent surgery in a major medical center. Of course, it was obvious to me that this wasn't the case, but she is now so happy that I don't even know if I should try to prove otherwise, especially since we received some paperwork with a diagnosis suggesting it might be some kind of cyst rather than cancer (which, again, contradicts the story about the stones).
...The morning after we checked into Mercury Hospital, I went to my mother's room and waited for the doctor, who spoke briefly with her. Once he stepped out into the hallway, I asked him if it was indeed a Klatskin tumor, to which he gave a somewhat patronizing response: "I just reviewed the MRI images... those people in San Diego are talking about some kind of cyst... yes, that's the nasty tumor"... (When he realized how terrified I was and that I understood the implications, he added, "or perhaps it's just a cyst")... and gone.
...On the morning of September 4, 2007, just before the surgery, I went to her room to say goodbye. The operation lasts five hours. I wait in the hallway. At the exit doors of the OR... they pass by me... I see her... they are wheeling her off to the ICU. I wait for the doctor... he leads me into a room with a whiteboard. He sketches something out... points to it and says, "We cut this out... everything is clean." I hand him 500 dollars.
...The next day... we are still in New York. We ask how she is doing. They say she’s fine... recovering. We head back toward San Diego.
...September 6, 2007. My sister calls them on the phone... they respond, "Her condition has changed." We asked what exactly happened... they told us they couldn't tell us precisely, but another surgery was performed because the sutures gave way... they explain to my sister that "something is eating at the stitches"... that she has been transferred to the step-down unit and placed on a ventilator. The discharge summary was written once everything was finalized, which, based on what they were saying at the time, makes it clear they had no idea what was actually happening (Peritonitis involves bile leakage causing infection).
...The following weekend, I return to New York. They call for the doctor on duty... the doctor arrives... we shake hands. I ask her, "What is going on? Is this moving toward better or worse?" She replies, "She is an elderly patient... the surgery lasted five hours... and as you know, your mother has cancer."
...A wave of weakness hits me and I step out of the hospital for some air. I walk around and start feeling slightly better. I return to the hospital, wash my hands, put on a suit and enter the room. The ventilator is running... she isn't conscious. I stroke her forehead and watch her; her eyes are half-open, her legs are twitching... she is restless. I can't help her. I head back to San Diego.
...September 11, 2007. They operate on her for the third time... same reason. Her condition is still described as "unstable." A day or two passes, then my sister calls me. The doctor wants everyone to come to the hospital on Saturday, September 15. For a consultation.
...On September 15, we arrive at the hospital. We wait for the doctor. He arrives and explains: "She doesn't have cancer... it's some kind of insidious infection... even though we didn't know, the surgery would have been the same regardless. I was cutting through live tissue because I believed it was cancer. If she actually had cancer, I could have given her 3 to 4 years of quality life." "I am truly sorry that complications arose... if the sutures fail one more time..." He shrugs his shoulders.
...From September 17 to 21, we keep asking about her status. They answer, "It's touch and go... her kidneys are still functioning... they are inserting the ventilator tube through her throat."
...September 22, around 1:00 PM, we all arrive at the hospital. My sister enters the room first... then I. I see that her condition is worse than before. The ventilator is working... I weep over her. I stroke her forehead and hair... she opens her eyes and sees me... she recognizes me... she lifts her head and opens her mouth to say something to me... all that can be heard is the sound of escaping air. She holds her head up... her mouth remains open... we look at each other... her head falls back onto the pillow... I lean my face against hers... she feels cold. I stroke her... I can't take any more and I step outside... I go to the balcony and cry. There is nothing we can do. We leave... my sister stays in New York... I have returned home. I am in the kitchen making tea... it's around 6:00 PM. My sister calls me and says... she passed away.
...She died at 2:42 PM... after we had already left.
Does anyone happen to know how to translate this into Latin? All questions and suggestions are welcome. Regards,
First, my deepest condolences. We all understand you here, because we have lost someone ourselves, or are in the process of losing someone right now...... From what I gather, they performed a classic Cholecystectomia—removing the gallbladder—but they did so during an active inflammation, which they likely had to do given the jaundice and the probable stone causing the biliary obstruction. So, they had to proceed. However, the inflammation spread to the abdomen, leading to the sutures failing and the development of Sepsis OP, which triggered everything else. There was also mention of a perforated duodenal ulcer—which means a hole formed in her duodenum, further complicating things. It was nearly impossible to intervene at that point; she fell into hemorrhagic shock, and the Sepsis OP led to kidney failure and eventually respiratory failure. I am so sorry. I know it is horrific, but sometimes so many things go wrong that even a doctor cannot influence the outcome. Believe me, no physician is indifferent when a patient dies, not even surgeons. That must be what happened. My sincere condolences once again.
slyheron84 said:Does anyone know where I can order Target? How much does it cost, or how can I get into a Roche study? Thanks!
You’re going to have to talk to an oncologist who needs to write a prescription for it; from there, you can order it through any private pharmacy. Though, honestly, I’m worried about the price tag. $667It’s going to be expensive, at the very least.
My dear father’s condition has taken a turn for the worse. He has completely stopped leaving the house, and by Monday, he had retreated entirely into himself—disoriented, rambling, just... lost. I rushed him to the neurology ER, and what did they do? Of course, they gave him a little Mann, some Dex, and sent him straight home. To make matters even more infuriating, they couldn't even find a vein properly, so all that Mann was essentially wasted. I have since gone through the trouble of organizing everything to secure those IV infusions so I can administer them myself at home. As if things weren't difficult enough, I just started a new job where I am working grueling hours from 7 AM until 8 PM, only to rush back to his side and catch a few hours of sleep whenever possible. I am utterly exhausted. My brother hasn't offered a single shred of help... and my heart is just breaking. I keep writing and writing... though I don't even know why, or for what purpose.
slyseal28 said:My husband is currently on his third cycle of the DTIC protocol. They drew blood today, and his liver enzymes look worse.
On Friday, his IBM was at 62 (with the upper limit being 38), and his ALT was 51 (limit is 48). It didn't seem like such a massive deal back then.
But today? His IBM hit 126. They ran tests—markers for hepatitis—and now we’re just stuck waiting. He had surgery last year and received blood transfusions and plasma and all sorts of things.
Is it actually possible that after dealing with cancer, he's facing hepatitis too? We are in the ICU right now. We'll update you when the results come in. Hang in there.
The numbers you're reporting aren't concerning at all; this is perfectly normal and to be expected during chemotherapy. So don't worry. Hepatitis?! Please. Just stay strong.
Linda Campbell said:It is incredibly difficult to witness a parent—a father—who was once an authority figure, facing such a grueling illness. You remember him as this pillar of strength, a protector, a role model, and more; then you hit this stage of life where you unfortunately have to watch that parent and act toward them as if they were a helpless, sick child. The roles are reversed. You are observing him through so many different dimensions of life now. It is profoundly hard. Some people are mature enough for this and know how to carry themselves; some are just swept up in the moment and endure it somehow; others actually reach maturity during these exact moments. You are stepping into his role now. You have to be strong for him, and you have to stay strong until the very end, but also for your mother. Regardless, let it all out as much as you can. Fight until the final second, just as I am doing myself—literally until my last breath. Because as long as he is still here, there is always something new to try. Hang in there.
Thank you all for the support. It is hard, believe me, but I am fighting. Actually, it is he who gives me strength, because even he refuses to surrender. I cannot even begin to describe his willpower and grit. He is on heavy doses of Durogesik, yet he still insists on going outside; he can barely manage in that wheelchair, but he simply will not give up. On the contrary, he constantly talks about how he needs to exercise more because he has weakened slightly. If you could see him—yellowish-pale, eyelids half-closed—and yet, he fights. How could I not?! And when I see you fighters, especially you, Linda Campbell... that is a level of strength reserved only for the chosen ones. Someone once told me that God never gives anyone more than they can handle. Don't pay any mind to my brothers or my mother-in-law; I suppose men are just built differently than us. (No offense intended to anyone). My older brother lives only about five blocks away from my parents, yet he won't show up for days, let alone weeks, to check on my father and mother—not to mention whenever something actually needs to be done... Meanwhile, I am the one coming from the other side of town, working shifts, and going to them every single day. Every single day. Whenever they need to be driven somewhere, I am there. And it isn't even a burden... quite the opposite... if I don't go to them, I just feel this restlessness. As for my mother-in-law, she never visits because my parents have a dog, and it bothers her immensely. I could go on about that for days, but why bother? I am completely at peace and fulfilled because I know I am doing everything within my power, and I won't have any regrets one day. Just like you, you have every right to total peace because of who you are and what you are worth. Unlike certain others. Sending hugs to you all. And thank you for making me realize there are still wonderful people left in this world. Kisses.
Angela Wright said:My mother experienced two separate episodes today where she was gasping for air—literally clutching at nothing like a fish out of water. She was moaning in distress. It was horrific. Then, as the weather began to turn this afternoon, she seemed to settle instantly. Is it even possible to be that sensitive to a change in the atmosphere? We turned her onto her side, and she finally drifted off like a baby. Her breathing is deep and steady now. Onward to another day. Hang in there; things aren't always as they appear to be.😘
I truly appreciate your immense support. You’re absolutely right. Yesterday, they slept continuously from three in the afternoon until morning, and today seems slightly better. Though, I can't help but wonder—is this improvement just the result of that heavy dose of Durogesic? They seem almost euphoric... but regardless, we simply take it one day at a time. Thank you once again. Sending big hugs to all the "fighters" out there, wherever they may be.
I truly admire the courage you all show; I feel like I'm losing my own... I don't know if it's just one of those days... or perhaps... my dad's condition has taken a turn for the worse. He’s in excruciating pain, he has no strength left, he's become completely frail, and it feels as though he's simply given up. Yesterday, he fought with everything he had just to come visit me. Usually, even though he lost his right leg eight years ago and uses a wheelchair, nothing could stop him from living life to the fullest—he went everywhere and did everything, sometimes more than people who can walk perfectly fine. But yesterday, he was so weak he actually had to use a prosthesis just to navigate the few steps leading up to my apartment, and he pushed himself to the absolute limit to do it. Sadly, I have a feeling that was his final visit. Today, despite being on 50 mcg of Durogesic, several doses of Anacin, and Lumidol, the pain still ravages him. He just stares blankly at a single point, barely uttering a word, and my heart is just breaking. My mother and I try to act as if everything is fine, but the second I leave the room, I break down crying... because he was never the weak or sickly type. I want to pull him close and tell him I love him, even though he already knows; I'm just terrified that doing so would only upset him more, because he'd realize I'm saying goodbye. I find myself talking to all of you here more than anyone else, and THANK YOU for that. You are constantly in my thoughts, and you provide me with strength. Kisses.
Linda Campbell said:She passed away tonight at 10:30 PM. She fought until her very last breath. We were by her side all day today—kissing her, holding her hands, kissing her face. She knew she wasn't alone. Don't you ever give up, people. The two of us sat down last night and finalized everything; we were supposed to start the new treatment this morning, and she was actually quite optimistic about it. I feel an incredible sense of peace right now because she has finally found hers. Personally, I have nothing to reproach myself for; I fought until the end and tried absolutely everything. I was over at the Mayo Clinic with her two or three times every single day. I was always there to cheer her up and lift her spirits. Honestly, she had the most beautiful pajamas in the entire hospital and the loveliest wig, which I personally picked out for her. She was an exceptional woman throughout her whole life, including this final day. Coincidentally, today is the feast day of Mother Teresa, and she truly embodied that same spirit. My greetings to you all. And please, do not be afraid.
Dear Linda Campbell, please accept my deepest condolences. I truly admire your courage and the serenity you are showing.
Greetings to all fellow fighters. I’ve been MIA for a few days because I’ve been spending nearly all my time helping my dad with radiation treatments and work. Unfortunately, it isn't his head that's the primary concern right now—it's this massive lump under his armpit. I wanted to ask: how long have your loved ones been on dexamethasone? While he was on the dex, he seemed fine, but then his oncologist added Miller to the mix, and honestly, it feels like it's doing absolutely nothing. Has anyone else noticed an increased appetite while taking dex? My dad just eats and eats; he's hungry non-stop. He also has this intense redness in his face—has anyone else seen this or dealt with it given how long they've been on steroids? I know of patients who have been on dex for as long as six months. But when it's someone you actually love, all that medical knowledge you think you have just evaporates. Emotions take over. You find yourself constantly questioning every single medical procedure and obsessing over what else can possibly be done. One thing I know for sure—and this community has really helped me realize—is to cherish every single new day. Enjoy every moment while we still can, while we can still go somewhere together and truly be a family. I know that one day, there won't be anything left to pour out. Sending big hugs and strength to everyone...
Greetings, everyone. I am back in the thick of daily radiation treatments with my father. I noticed some questions popping up regarding skin care—specifically, what to apply to the skin. I have been using standard Bepanthen cream (the baby version) on my dad, including his scalp after he experienced some hair loss due to the radiation, and it has worked out quite well. Regarding those elevated transaminase levels: a slight increase doesn't necessarily mean anything at all. It is only when values are four times the upper limit that an abdominal ultrasound becomes necessary, or perhaps a CT scan if it is part of managing a primary illness. I must disagree with someone who posted here suggesting that an MRI is superior to a CT. An MRI is better for the brain or bones, certainly, but not for parenchymal organs.