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

Angela Wright said:Maya and I dealt with that exact same fear. Honestly, what really gets to you is when your sister starts telling you how my kids might lose me too soon... and believe me, that feeling? It’s way worse. 😢

I truly believe it’s awful when that feeling starts to "haunt" you. But honestly? I think it only happens because you're on this forum every single day. You're constantly facing people who are battling illness or dealing with their families, and you end up living through everyone else's pain and suffering day after day.

Amanda Wells75 said:I think it’s terrible when you feel like you're being "haunted." Personally, I believe it's just because you're on this forum every single day, constantly running into people who are battling illness or dealing with their families, and you end up reliving someone else's pain and suffering every day.

I’ve actually thought about that myself, but then again, how could anyone else's situation hit me harder than what happened with my Mom...?
Well, I hope you're right.

Mom was finally discharged today. According to her discharge papers, they drained about 6 liters of fluid and she received some blood transfusions and IV fluids.
So, there's this specific line in the report that says:
Ultrasound via probe: abundant free fluid with significant carcinosis. Does that mean the cancer has spread throughout the entire abdomen?

Amanda Wells75 said:Mom was discharged today. Her release papers say they drained 6 liters of fluid, and she received blood transfusions and IV fluids.
Now, there's this specific sentence in there that's bothering me:
"Ultrasound via abdominal probe: abundant free fluid with significant carcinosis." Does that mean the cancer has spread throughout the entire abdomen?

Unfortunately, it's widespread. 😢 That explains why so much fluid keeps building up.
I honestly don't know what to say to comfort you...
Look, she's home now, and being in her own space seems to be the most important thing for her mental state right now.
As for everything else, you'll just have to deal with it as things progress.
Stay strong, and most importantly, try to keep your head above water. If you start falling apart, it’s going to be incredibly hard on her—it becomes an extra burden she shouldn't have to carry.
Find some kind of outlet to redirect your focus, otherwise, you're going to snap. For me, having my dog was a lifesaver, along with those little 15-minute walks around the apartment complex three times a day.

Hey everyone, we just got the green light for 6 more cycles of Temodal. So far, my husband has handled everything pretty well and the tumor has shrunk quite a bit, though according to the doctors, it’s still too large to go under the knife. Has anyone here dealt with such a long stretch of chemotherapy? He’s already been on chemo for almost 8 months (plus some radiation), so I’m genuinely worried about how he’ll hold up through these next 6 rounds. Thanks in advance... cheers

Hi everyone,

I just had my CSF analysis done, and the report says: "CSF sediment shows some monocytes and degeneratively changed naked nuclei. Findings are normal."
I’ve been trying to dig into this to understand it better, but I can't find any explanation for what "naked cells" actually means 🙄???
If anyone knows
Thanks a lot

Mom has been back in the hospital since Saturday. She was home for three days, from Tuesday until then, but things took a turn for the worse—fluid buildup again. They haven't had to do a puncture yet, so they’re saying it isn't critical just yet. She's on IV fluids and blood transfusions now. Her appetite is basically non-existent; she can barely eat anything. Her stomach is having a really hard time processing whatever she does manage to swallow, too much burping and frequent vomiting. I honestly don't know if that's from the fluid accumulation messing with her digestion or if it's the tumors themselves. Mom is in quite a bit of pain, but they have her on an IV and likely some pain meds because she says she’s just drifting off all day. Is this already reaching the terminal stage, or not quite there? Her mind is still sharp, though. Oops, I just hope this phase of suffering doesn't drag on for too long. Zachary Howard2, how is your father-in-law doing?
goldensailor0, how's your sister doing?

Amanda Wells75 said:Is this already the terminal phase, or is there still hope? Mom is still lucid and sharp.

Yes, honey... it’s just going to be a slow drift toward sleep until she slips into a semi-conscious state. Given how much fluid is building up, eventually, it’s going to hit the lungs and settle around the heart... that’s usually how the progression goes. 😢 I just really hope you guys can get her pain managed properly.
Hang in there. Just stay by her side, hold her tight, kiss her, and talk to her about all those beautiful memories—keep those good times alive for her.
🙂

I talked to the doctor yesterday and she told me that the issue with Mom was based on the pathology report—the tumor was mixed, made up of different types of cells. No matter how many times they swapped out the chemo, they just couldn't get her into remission. It’s because certain chemo drugs only target specific types of cancer cells. I asked her if that was because it was caught at stage IIIIC, which might be why remission was out of reach, and she said while the stage matters, the way the chemo interacts with the cells is just as critical. Usually, the standard practice is surgery, then chemo, and once you hit remission, you go back in for a second surgery to clear out whatever is left, maybe some remaining spots. She mentioned there are beautiful cases where women in this stage still get to live a good quality life for a while, but unfortunately, that won't be the case for my Mom .
I have to say, things really started heading downhill once she stopped the IV chemo and started taking Endoxan (that's the oral chemo pill). While she was on the IV stuff, the CT scans were always consistent, showing two spots on the liver—one at 1 cm and one at 3 cm—and it stayed like that for about six months. Her last chemo was on December 17th, and the CT scan on January 22nd already showed a ton of secondary growths on the liver; everything else seemed okay. Mom had surgery on May 22nd of last year, and now she's already in the terminal phase. Everything just happened way too fast.
She said to me yesterday, maybe it feels worse for her because she's taking these pills every single morning and night, whereas when she was doing the IV chemo, she actually had some downtime to recover. I told her, well, maybe it's because it’s like being on constant chemo (I know I'm lying). Then she asks me why this fluid keeps building up, if it’s going to keep accumulating forever... I tell her they said there's a possibility (but I know it will). Then she asks *why* it happens, and I tell her I have no clue. She says she'll look it up on the internet, but I told her I already looked and couldn't find any real explanation, just something about blood pressure imbalances. I can't bring myself to tell her that her liver and kidneys are failing and it’s basically "total systemic failure."
She also mentioned she has an appointment with the oncologist on March 23rd. I think once she sees those markers—which are bound to be sky-high—and if the oncologist tells her there's nothing more they can do, she’s going to completely fall apart. Part of me wants to tell her we don't need to check the markers anymore and we don't even need to drive her to see the specialist in the city, but I just can't say it. I simply can't voice it. It feels pointless to keep running these tests and driving to appointments when she's in the final stages.
I can't believe how quickly it all unfolded. Just at the beginning of February, she was making sure I followed my diet and she said it wasn't even hard; she actually enjoyed it. She used to make noodles and homemade dough because she insisted kids should eat as little processed stuff as possible—too many preservatives and additives in store-bought food—so she’d make it from scratch for them.
And don't even get me started on how much she did, from tending the garden to working in the woods. She and Dad would split wood, sometimes cutting 50 feet of wood for the winter just so we'd all be set. She could go out and pick up 20 pounds of porcini mushrooms in one go. We’d harvest two tons of potatoes and pass them out down the street because she always found a reason to give to someone. There was the guy on a tiny pension, the one who lost his job, the one whose wife left him, the one with three kids, the misunderstood gay man, the guy on social security... she had empathy for everyone. I used to tell her, "Mom, don't work so hard, if we run out of something we'll buy it," and she’d just say, "What's going to happen to this land if I leave it empty? You have to tend to it regardless, so it might as well grow something." And oh, the amount of baking she did for Christmas with everything she grew in the garden and fields... she used to say what kind of Christmas is it without cookies? She truly didn't deserve this, but God knows why. God takes His angels first.
I just can't believe she's this sick. I keep hoping I'll wake up and it was all just a bad dream. Sometimes I dream that Nora (my daughter) and I come over to Mom's, and we're climbing the stairs—I'm carrying Nora—and Mom is clearing the hallway, smiling and happy just like she used to be. In the dream, she looks exactly like she did when she was healthy. It’s such a beautiful feeling, a wonderful dream, but unfortunately, it’s just a dream...
So, I guess I kind of "suffocated" you all there—thanks to everyone who actually took the time to read my post. I just needed to get some things off my chest, and honestly, I feel a little lighter now.

I've been heading over to Mom's every single day. I'm spending as much time with her as humanly possible, even though I'd stay right there by her side just watching her sleep if I could...

My dear Maya, reading this just breaks my heart... everything you’re going through feels all too familiar...😢
I honestly don't know what to say, other than to lean on God's providence. Maybe He won't grant a miracle cure, but He will provide grace to all of you, ensuring the most peaceful path forward. She has truly earned her peace through all the good she's done in her life.
Be proud of your Mom and proud of yourself, honey. You’ll find a way to get through this, one step at a time.
🙂

I am in desperate need of some advice or help here. My mother-in-law just finished her 7th cycle of Temodal, and honestly, she has taken it incredibly hard. For the last two days, she’s been vomiting yellow bile, can't keep any food down, and spends most of her time sleeping—she seems disoriented and can barely stay steady on her feet. It’s strange because, up until this point, she actually tolerated the treatments quite well. But ever since she found out there are still six more cycles ahead of her, she has completely spiraled. She spent an entire month just crying, lying around, or sitting staring into space. Lately, her legs have lost control, making it difficult for her to walk, and while her knees are actually feeling better, she’s started stumbling when she talks. She’s forgetting things and repeating the exact same questions over and over again. All of this has happened within the last ten days—between the 6th and 7th Temodal treatments. Along with the Temodal, she’s taking Zofran, Reglan, and Controloc for her stomach. Aside from those, her regular meds are just Levothyroxine, Xanax, and Phenobarbital, plus Kafetin if needed. We’ve also been giving her herbal vitamins and immune boosters. Since her daughter-in-law (my mother-in-law's daughter) handles all the doctor appointments and lab work while I handle the day-to-day care, I’ve suggested a few times that she ask about being prescribed Dexamethasone. However, both the oncologist and the neurosurgeon said there was no need for it. Watching her over these last four days, I feel like we’re back to how things were right before the surgery, and I'm terrified that the tumor might be growing. Her last MRI was on March 20th, and I am desperately hoping the results come back okay and that this is all just a side effect of the Temodal. I’ve been pulling my hair out for days, and none of us are sleeping because we're so worried. We’re doing everything we can to support her—massages, exercises, trying to keep things positive—but she just keeps sinking deeper. This constant vomiting is really starting to scare me; I can't help but wonder if it's the tumor itself rather than the Temodal.

Dear Alma, based on what I've seen before, I’m afraid you might be right. It looks like a relapse on the Temodal is happening, and that edema is clearly spiraling out of control. Get her to the ER right away; they need to run an emergency CT scan immediately. I am so sorry, but you have to act now—without anti-edema therapy, she’s going to crash fast, and things will go downhill in a heartbeat.
Hang in there.

Angela Wright said:Dear Alma, based on what I've seen, I’m afraid you might be right. It looks like things have taken a turn for the worse—a relapse on the Temodal—and that edema is likely flaring up too. You should get her to the ER immediately; they'll need to run an urgent CT scan. I am so sorry, but you really need to act now. Without anti-edema therapy, she could deteriorate incredibly fast, and then we'll be looking at a situation where everything just goes downhill.
Hang in there.

Thanks for the advice. I really hope my sister-in-law listens, because she's the one managing the doctors and the actual treatment, while I'm the one actually taking care of my mother-in-law. It’s ugly to say, but I am honestly sick to death of their constant advice and opinions. They act like she’s just dealing with the flu rather than a tumor. Once things get critical and she’s bedridden, they bring her to me because I’m the one who knows how to "get her back on her feet," yet they drive me absolutely crazy with all their suggestions and unsolicited input. Sometimes I just want to pack it all in and run away, but I can't do that because of my kids.🙂

Amanda Wells75 said:My Mom is back in the hospital as of Saturday. She was home for three days starting Tuesday, but things took a turn for the worse—she's dealing with fluid buildup again. They haven't had to perform a paracentesis yet, so they say it isn't critical just yet. She’s being put back on IV fluids and blood transfusions. Her appetite is nonexistent; she can barely eat anything. Her stomach just won't process food, leading to constant burping and vomiting. I can't tell if it's the fluid accumulation making digestion difficult or if the tumors are the culprit. She’s in quite a bit of abdominal pain, though they have her on an IV and likely some pain management since she’s drifting off all day. Is this already considered the terminal phase, or is there more to the road? Mentally, she’s still very sharp. Oops, I really hope this period of suffering doesn't drag on too long. Zachary Howard2, how is your father-in-law doing?
goldensailor0, how is your sister?

Hang in there, dear. This does sound like the terminal phase. As Angela Wright mentioned to you, she will likely sleep more and more as this progresses; that is exactly what happened with my Mom. Three days before she passed, she had a moment of clarity where she "came back to herself," calling out to all of us to say her goodbyes. (She had been placed in a facility in Small Town, USA because she was incontinent and unable to move, so I couldn't care for her alone at home.) After those three days, she simply fell asleep.
For a long time afterward, I kept dreaming that she was sick and needed to pass away, until one night I drifted off and dreamed she had come to see me. She told me that the transition to the next world was swift and that Dad was waiting for her there (he passed three years before she did).
After that, I finally found some peace.

My mother-in-law starts chemotherapy this Monday. I have to admit, I'm feeling a bit anxious about how her body will handle the treatment.
She’s been coughing quite a bit lately, which is worrying me, and she’s lost a significant amount of weight too.
I've gone over all the necessary instructions with her to make sure she's prepared. If I can get over this lung infection I'm dealing with, we're planning to head out to visit them this weekend.

Let's hope for the best.

Thanks for the kind words.
Yesterday, I ran into the doctor at the hospital—he actually came up to me since he’s been managing her care—and he told me straight out that there isn't much more we can do for Mom, other than managing her pain with meds and keeping her on an IV so she doesn't suffer from hunger or thirst. Mom's abdomen is getting pretty large and hard; you can actually feel exactly where the tumors are just by touching her, and it’s honestly horrific. The doctor mentioned there's some fluid buildup, too, but the tumors are taking up most of the space in her abdominal cavity. They can't even drain the fluid because there's just too much tumor mass in the way. Mom is vomiting a lot, and the doctor thinks the tumors have likely overtaken her digestive organs. He says we're looking at days, maybe even a week, before she leaves us. I pleaded with him to keep her in the hospital as long as possible because I honestly don't know how I'll cope once they discharge her to go home. I'm worried the fluid buildup will "suffocate" her since it keeps accumulating and they can't puncture it. I'm heading back to see her this afternoon, and I'm terrified of what state I'll find her in... . He also told me how sorry he is that the chemo didn't work, mostly because the pathology report shows it's a mixed tumor. I asked him how common that type is, and he said they're incredibly rare and you don't see them often. It really makes you think—what are the odds of getting cancer, and then what are the odds of it being that specific "type" where nothing works... Life is just cruel sometimes, writing these heartbreaking stories.
I'm worried because she's sleeping so much. They're giving her Tramal drops for the pain, and she says those drops just knock her out. I just hope there's a quick end to all this misery, the pain, the suffering... watching someone else go through this agony is just devastating.
I really hope the chemo helps my father-in-law, you know, extends his life and gives him at least some quality time. What has caused him to lose so much weight? Is he in any pain?

Amanda Wells75 said:Thanks for the kind words.
Yesterday, I ran into her doctor while passing through the hospital—he actually approached me since he’s been managing her case—and he told me that, unfortunately, there isn't much more we can do besides managing her pain with medication and keeping her on an IV so she doesn't suffer from hunger or thirst. Mom's abdomen is quite large and firm; you can actually feel exactly where the tumors are just by hand, and it's truly horrific. The doctor mentioned there's some fluid buildup, but the tumors themselves are mostly filling up her abdominal cavity. They can't even perform a paracentesis to drain the fluid because there's just too much tumor mass in the way. She’s vomiting constantly, and the doctor suspects the tumors have likely obstructed her digestive organs. He said we're looking at a matter of days, maybe a week, before she leaves us. I pleaded with him to keep her in the hospital as long as possible because I honestly don't know how I'll cope if they discharge her to the house. I worry the fluid will essentially "suffocate" her since it keeps accumulating and they can't drain it. I'm heading back to see her this afternoon, and I'm dreading what state I'll find her in... . He also expressed how sorry he is that the chemo didn't work, specifically because the pathology report identified it as a mixed tumor. When I asked how common that is, he said they are incredibly rare. It makes me wonder about the odds—first, the chance of getting cancer, and then the even slimmer chance of getting the specific type that responds to nothing... Life is incredibly cruel sometimes; it really writes these heartbreaking stories.
I'm worried because she's sleeping so much; they're giving her Tramal for the pain, and she says it just puts her out. I just hope that all this misery, the ache, and the suffering... comes to an end soon, because watching someone else go through this level of agony is devastating.
I'm hoping the chemo helps your father-in-law, perhaps extending his life or at least giving him some quality time. What caused his weight loss? Is he in any pain?

I know exactly what you're feeling; it was the same for me... that feeling of knowing someone is suffering and dying while you stand there completely helpless.
When my mom passed, I felt the pain, but also a profound sense of relief that she wasn't suffering anymore. That was the first night I actually slept through the night.

Thankfully, my father-in-law isn't in any pain at all.
He has lost quite a bit of weight because during his surgery, they had to reduce his stomach by nearly half and create a replacement esophagus. Now he has to eat tiny amounts five times a day, and I suspect the disease itself is slowly consuming him from the inside.
Alongside the chemo, we're going to try alternative methods as well (like we have been), so whatever God wills happens. But I am scared—really scared—especially since my husband and I are 93 miles so far away from them and can't just rush over if things take a turn. I told my mother-in-law to call me immediately if anything feels off.

Thank God your father-in-law isn't in pain, that really means a lot. I imagine it feels even tougher when you guys are living so far away from them. I’m honestly just hoping the chemo can buy him some more time to be with you all.

My Mom was just throwing up all day yesterday, barely able to keep a tiny sip of water down before she's forced to vomit again. She's gotten so thin, yet her stomach is swollen from the tumors and the fluid buildup. They tried to drain the fluid yesterday, but they only got about a cup or two out—nothing compared to those liters they were pulling out of her before. The doctor told me that in the terminal stage, it's incredibly hard to puncture because the tumor mass creates these little pockets where the fluid gets trapped, so you can never truly get it all out during a procedure.
My dear friends, please keep fighting for any shred of hope. I know there are beautiful cases where people, despite their illness, manage to live many wonderful years with great quality of life, but unfortunately, that won't be the case for my Mom. It hasn't even been ten full months since her diagnosis, and she's already in the terminal phase.

Amanda Wells75 said:Thank God your father-in-law isn't in pain; that honestly means everything. I imagine it feels even heavier when you're all living so far away from them. I truly hope the chemo buys him enough time to spend some more quality moments with you all.

My Mom was just vomiting all day yesterday—she’ll take a tiny sip of water, and then her body just rejects it immediately. She’s become incredibly thin, though she still has that distended abdomen caused by the tumors and the fluid buildup. They attempted a paracentesis yesterday to drain the fluid, but they only managed to get about two or three deciliters out, which is nothing compared to the liters they used to pull. The doctor explained to me that in the terminal phase, draining fluid becomes an uphill battle because the tumor mass creates these little pockets where the fluid gets trapped; you can never truly get it all out during a procedure like that.
Everyone, please keep fighting for those moments of hope. I know there are beautiful stories out there where people defy the odds and enjoy several more years of high-quality life despite their diagnosis. But unfortunately, with my Mom, that doesn't seem to be the case. It hasn't even been ten full months since the initial diagnosis, and we are already facing the terminal stage.

Unfortunately, it’s such a devious disease—it’s often caught too late and progresses at a terrifying speed.
They gave my Mom six months, yet she managed to hold on for two years.
If you can, try to frame it in a way where you see the passing as a mercy, so she doesn't have to suffer for too long.
The last few months of my Mom's life were pure agony and suffering; eventually, I found myself praying to God that she would just pass away so she wouldn't have to hurt anymore.
Sending you a virtual 🙂

Hey everyone, just wanted to let you all know that my Mom passed away a little while ago, around 12:30 AM.
She really wanted us to bring a priest by, so we had one with her today. She’s finally at peace now.