Posts by Rachel Williams

ruggedfox11 said:I had a dream last night. I was performing a follow-up CT scan, watching those gray shadows flicker across the monitor, only to see that the tumor hadn't moved an inch. It was still right there. Exactly where it was before. Honestly? I won't even attempt to describe the way I woke up.

I feel compelled to address this, though I’ll be careful not to jinx things—we certainly don't want that tumor moving an inch. In fact, we should probably be grateful for its current stillness. Isn't that the strange paradox here? As long as it stays put, it's fine. As long as no new metastases appear, we're doing alright. It is one of those peculiar, heavy illnesses where "progress" is measured by the total absence of change. If nothing improves, you're winning. Does that sound backwards? Perhaps. But in this reality, stability is the only victory we get. 🙂

Our patients require us to be at our best—physically sound and mentally resilient. How else can we expect to provide them with the care they deserve? 🙂

Chrissy, let’s be honest: Supportan and all those other brands are absolutely revolting. Is there even a point in trying them? If I had to pick the lesser of two evils, maybe a chocolate or coffee protein shake could pass, but even then, they aren't exactly "good." They're just slightly less nauseating than the rest. 😁 When you're stuck in a hospital, you don't exactly have much say in the matter regarding your care or the treatment plan. You just take what they give you. But once Dad is back home and you're looking at ordering supplies from CVS or Walgreens, you finally regain some control. At that point, you can always tell them exactly which combination of medications or supplies you want to go with. 🙂

Robin Diaz4 said:Today, Dad was in a better mood than he has been in the last three weeks. He even managed to eat more than usual lately. His roommates in the ward were telling him stories about people they know who have the same diagnosis and lived for many years afterward. Even if those stories are just tall tales, they probably did him some good. I've read halfway through "against cancer." It’s actually a relief to see that the recommended diet includes a lot of foods Dad actually enjoys eating.

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My mother had lung cancer with metastases in her lymph nodes and two tumors, each growing alongside the carotid artery in her neck, plus three spots on her liver. Today, two years and eight months later, her lungs are just as affected as they were at the start, but her liver and all her internal organs are clear; the new metastases are only in her bones... the doctor treating her at the Mayo Clinic told her plainly that she couldn't explain how it happened this way, calling her a phoenix...
Doctors can talk all they want about averages and statistics, but your father is your father, not just some number in a sequence... how one settles things mentally is a massive factor... I tease my mom that this is the first time her being as stubborn as a mule has actually paid off, because she simply refuses to let the illness win.😁

Quote : my Soul

Grace Ross20 said:Rachel Williams, if you wouldn't mind, could you perhaps describe the process of how your health completely fell apart?
For the last ten days, my heart has been racing uncontrollably. I’m struggling to catch my breath, and these bouts of dizziness just keep hitting me out of nowhere. Is it possible that seeing my father end up in the hospital with an embolism finally took its toll on me?

I am looking for some semblance of stability—some way to settle down, to find acceptance, to simply stop before I irreversibly destroy myself. How does one actually preserve their mental health? Because when things start spiraling like this, I truly feel like I’m on the verge of losing my mind.

Regarding what you’ve described—as Angela Wright pointed out, it sounds like a panic attack. It could very well be anxiety, which isn't surprising at all given the current circumstances. But then again, there are ways to treat that. 😉 I find myself thinking about all of this quite separately from the current discussion. I have been dealing with severe anxiety since I was about fifteen years old. Initially, the approach was simply to medicate me—they put me on Xanax right out of the gate. But after a year and a half of being stuck in that cycle of pills and receiving subpar psychotherapy, I eventually just threw in the towel. I gave up on the medication and the therapy altogether. Instead, I turned to reading and deep-diving into research to understand what was actually happening to me. Since then, I haven’t touched a single pill of that kind. Now, I handle everything on my own terms, taking it one step at a time.
And now, regarding my mother’s health struggles—insomnia, sleeping maybe three to four hours at a stretch for months on end, light sleep, constant nightmares... then there was the kidney failure, which led to a situation where, after every possible medical test my husband and I could undergo, it turns out we can't even conceive, despite trying for nearly two years now. On top of all that, she deals with constant nausea, stomach issues, and an immune system that is essentially non-existent.

Quote : my Soul

Robin Diaz4 said:Thank you for the recommendation. We've already started hitting complications; my father developed a fever, so his chemotherapy has been postponed indefinitely. I feel utterly wretched. By some strange stroke of luck, we managed to go from complete ignorance to a definitive diagnosis in just one week. Chemotherapy was supposed to begin immediately, and I truly held onto this flicker of hope that it would actually work. Yesterday, I could still find a way to be positive, but today? Today is nothing but despair.
I simply wasn't prepared for all of this—and honestly, I still am not.

No one is ever truly ready. It isn't as if those battling illness—or those of us standing by their side—are ever consulted on whether we have the capacity to handle the weight of it all. We aren't asked if we are prepared. It simply is what it is. And if we don't find a way to brace ourselves and face this head-on, we risk making things even harder for them. At the end of the day, our own feelings aren't the priority here. We aren't the ones who matter.

Quote : my Soul

Angela Wright said:You really need to pull yourself together and stop making this about you just because you don't know how to handle the weight of it all. Does anyone actually feel prepared for life's most fundamental, devastating blows? Of course not. Nobody finds this easy to deal with. If you truly intend to be his pillar of strength—if you want to come out on the other side of this without being broken yourself—you have to face reality head-on. You have to accept the situation exactly as it is, because there is no other option. You need to realize that this is happening to him, not you. You are simply caught in the wake of his storm. He is the one living with the diagnosis. He is the one facing a delayed chemotherapy treatment. His entire future is hanging in the balance, compounded by the crushing sense of guilt he feels toward everyone else in the family. At the end of the day, he is the one carrying the heaviest burden.
Don't turn this into a personal struggle or make things harder on him than they already are. Clear your head; stop overanalyzing everything and chewing on problems that haven't even happened yet. Just react to things as they unfold.
His chemo was pushed back because he’s dealing with some kind of infection, most likely. We just need to get that cleared up immediately so he can get back on track with his treatment.

Look, I won't pretend it isn't difficult, but then again, nobody ever promised us it would be easy. It's incredibly taxing, and people have to navigate these situations day by day. You'll find your way through it too.

Keep your chin up and find that inner strength.

🙏🙏🙏
People often ask me, "How do you keep going?" My response is always the same: what else is there to do?
I can't exactly opt out of this life and enroll in a different one... we are where we are, so let's just focus on helping and doing everything in our power for the ones we love.

Robin Diaz4 said:I haven't read through this entire thread yet, but I have a few questions—or rather, I’m asking for advice. Is it actually possible to get a second opinion just by providing the medical paperwork? I really don't want to put my Dad through all those grueling tests again if he's already done them.
It's lung cancer (not small cell, or so I heard, though I'm not entirely sure which specific type they meant) and it has spread to the liver.
I realize the prognosis isn't great, but I need to be certain that I've exhausted every single option available to us.
I have zero experience dealing with cancer. I don't even know where to begin. This all happened so suddenly—it was discovered by accident—and we are all still in total shock. Of course, I am willing to pay for a consultation or treatment with a private specialist if necessary; I just don't know which one to turn to.

If you happen to be in the Washington, D.C. area, I highly recommend Dr. Cepulica. We went to see him ourselves—my mother is also battling lung cancer—and we were truly satisfied with his approach and everything else.

ruggedfox11 said:I have to admit, I truly admire anyone who can actually manage to cope with this kind of heavy illness. I try to "hold it together," but it just doesn't come naturally to me; I feel like I’m starting to fall apart. The crying spells are getting more frequent, my head is filled with horrific scenarios about death, the insomnia, the fear... I find myself wondering if it would have been better for my husband to stay with his ex—she's living in Germany now—maybe he would be there with her and perhaps his treatment would even be better. This is terrifying. I jump at every groan he makes; he’s naturally high-strung, and until now, I could tune out his nervous outbursts, but now they grate on me. Honestly... part of me just wants to pack up and leave so I don't have to witness all the agony he's going through.
I know I sound terrible, but that’s simply how I feel.

For you all, this is still fresh and new, but those of us who "know" how to deal with this have been in the thick of it for a long time. My mother faced cancer for the first time when I wasn't even twelve
years old. Back then, she went through surgery, six cycles of chemo, and over 30 radiation sessions. For the next five years, life was just one medical report after another until the story was officially over and everything was clear. I had to grow up very fast back then because I was my mother's sole caregiver, forced to grasp and accept things that children really shouldn't have to deal with.
When she was diagnosed with lung cancer two and a half years ago, I couldn't even sleep during that first month, even with the help of Normaban. Now that I am an adult—unlike that first time—and I have a husband for support, it was just a different kind of struggle, trying to face it all again and accept it. Sadly, even at 31, my friends constantly turn to me if someone they know has cancer, because they know I understand this more than anyone who isn't even in the medical field.
Personally, it took me about six months to stop falling apart on a daily basis and reach a point where I only break down occasionally. I was in the States for three weeks visiting Mom, and I don't think I managed to sleep more than two or three times before dawn. All night long, I just lay there listening, waiting to see if everything was okay, even though Mom is currently in a good phase...

You just have to let time take its course, and until then, preserve your own health as much as possible. As for wondering "what if"—there is absolutely no use in that. The situation is what it is, and strength needs to be directed toward the things we can actually influence, rather than wasting it on regrets...

stormyfalcon68 said:When Dad was first diagnosed with cancer, I couldn't wrap my head around it. I spent so much time hitting my head against a wall, desperately searching for answers, advice, or any kind of help...
As time passed, I finally realized just how many things are completely out of our hands. You feel so incredibly small and helpless caught in that whirlwind of illness and everything it drags along with it—that absolute impossibility of staying in control...
Living day by day is what kept me sane. We treated every good day as an opportunity to make the most of life, and we practically counted the minutes until the end of every bad one.
Looking back, I would suggest some form of psychological support to anyone dealing with a diagnosis, whether you're the patient or part of the family, in whatever way feels right for you.

I sign every word of this... personally, if I had the chance right now, I’d reach out to a support group for families of the sick, and I think sooner or later, I'll seek out psychotherapy myself.
In the middle of that emotional cyclone, my own health went straight down the drain too. Even now that I've—shall we say—calmed down, I'm still dealing with the fallout, knowing full well that some of it will be permanent.

ruggedfox11 said:I read about that too, and now I feel like I've seen enough :-) His ankle joints swelled up a few days before the first chemo, but after the treatment, the swelling subsided and it’s gone now—except for some tingling and that occasional loss of sensation below the operated knee.
He started gaining weight after the first round of chemo, but he had spent 20 days in the hematology ward because they initially suspected lymphoma. Since he couldn't even sleep, he was awake for those full 20 days, just sitting on the edge of his bed; the weight loss was extreme, God almighty, he was nothing but skin and bones. I honestly thought he might fall apart if I even touched him. He gets Supportane via prescription, but once he finally got home, naturally, he was hungry for everything. He became like a termite, eating whatever was within reach, so he just takes the Supportane here and there whenever it suits him. :-)

Hehehe, it's like you're describing my mother. She also spent five weeks in the hospital at the start and was just skin and bones herself, but once she got home, the weight came back immediately.😁

I don't think I'll ever forget how, during that phase, I would practically hover over her in her room almost every single night just to check if she was okay, if she was sleeping, if she was breathing... even today, when I go to stay with her for a few days, I still find myself doing the exact same thing...

ruggedfox11 said:So, my husband has just finished his second round of chemo.
The journey was marked by a series of minor setbacks—some nausea, persistent fatigue, bouts of fever, and those unpredictable chills. Even a nagging cough has started to set in. All in all, though? It’s fine. Just one of those things.
What really keeps me up at night is his leg. He had surgery a long time ago—he’s actually got a prosthetic knee now—but lately, he’s complaining about losing sensation in it. He’s getting this constant tingling sensation below the knee. The doctor told us it’s "normal," attributing it to the massive weight loss he experienced during those twenty days of bed rest, suggesting some kind of nerve compression. This all started right after his first round of chemo. I honestly don't know what to make of it.

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It’s actually quite normal to experience this alongside chemo. My mother completely lost all sensation in her palms and feet and dealt with significant swelling. Once she finished her treatment, she spent some time taking diuretics to help the edema subside, and as time passed, that sensation gradually started to return. I also recall reading a post right here on this thread where another member mentioned her father lost all feeling in his hands due to chemo, only for it to come back eventually. You mentioned the weight loss—did the doctors prescribe anything like Prosure or Ensure shakes? Or perhaps Megostat? Both are prescription-based, but those nutritional shakes are packed with calories and essential nutrients, whereas Megostat is specifically meant to help with appetite.

Chloe Alvarez said:First off, I’ve just read through the last two pages, and honestly, my heart aches seeing everything you all are going through (or have endured). I came back to this thread because someone incredibly close to me lost their mother to illness last year. I see him slipping into depression because he feels powerless to help her, especially with such grim prognoses looming; he’s pulling away from everyone, including me. I try to set aside my own needs and feelings just to be there for him, but he keeps distancing himself further, and I feel lost on how to reach him. He won't talk to me about any of it—there's no release valve, no outlet at all. Does anyone have actual advice on what I should do? How can I help him navigate this stage while he's still trying to support his mom through the illness? They really only have each other; they don't have much else in terms of a support system...

Just be there for him. And for heaven's sake, don't even think about telling him "it will be better." A friend and I actually sat down the other day and concluded that's one of the most hollow, senseless things people say. We’re both only children of single mothers, and both our mothers are currently in the final stages of cancer, where it has already spread everywhere. Don't go digging into the details or trying to fix the unfixable; just let him know you're present. Let him know he can rely on you—not just for the practical stuff within your power, but simply to listen...

ruggedfox11 said:Hello everyone!
I’ve been reading through your posts for a few days now, but there is just so much information here that I can't possibly focus on everything at once. In the end, I decided to join the conversation and share my own story—mostly just to unburden my soul. Everyone around me seems to have vanished, leaving me alone in this nightmare, and I figured this might be the one place where I could find the understanding I desperately need..

So, about twenty days ago, my husband was diagnosed with small cell lung carcinoma, after spending several months in the hospital without a clear answer. We both accepted the diagnosis as best we could. I would really appreciate hearing from anyone else who has fought, or is currently fighting, this monster.

On top of that, I feel like I am personally falling apart. All the people I thought would be my support system have disappeared; my husband’s brother and my own friends have practically labeled me crazy, ignorant, or hysterical, implying that since my husband is essentially a dead man walking, there is no point in helping. They simply walked away. To make matters worse, I have a little baby who needs constant attention, yet I find myself retreating into the worlds of books and mathematics. I fear I won't be able to provide him with all the help he needs, whether it's physical or emotional.

Any advice, any words of comfort, anything would mean the world right now...

It isn't the exact same situation, but it's close. My mother was diagnosed with adenocarcinoma of the lung at a very late stage—largely due to a series of medical blunders and mistakes along the way. Back then, we weren't even sure if she’d live to see my wedding in ten months. Well, it’s been two years and seven months now. I wrote a previous post about how we basically live life one three-week checkup at a time. Generally speaking, the prognosis for all lung cancers is grim, but statistics are just numbers. My mother isn't a statistic; she is my mother, a fiercely stubborn woman, and she tends to do things her own way. In dealing with this disease, I truly believe her spirit helps her... her doctor has actually called her a phoenix a few times, and for good reason...

I don't know where you are receiving treatment, but we are at Jordanovac. People complain about that place constantly, but after four years of being passed back and forth between the Pulmonary clinic and the Mayo Clinic, we are eternally grateful to the doctors and nurses at Jordanovac... they are absolute angels.

The situation is absolute hell; that is just a fact. Everything you, your husband, and your baby are feeling right now is completely normal. Cancer doesn't just strike the patient; it strikes everyone who loves them. It's a shock to everyone, and everyone is just trying to handle it in their own way...
Forget the statistics for a moment. Treat him like a brother, a son, or a spouse, and make the most of the time you have left by filling it with love and laughter. Whether someone has cancer or not, none of us knows how much time we have left... even those of us who are healthy tend to take our time for granted, but a car accident can happen to anyone at any time. My advice? You have a little baby; create as many memories as possible that you can show her in pictures or tell her about one day.🙂

Grace Ross20 said:The absolute worst part is dealing with people who only know how to ask if I'm okay, or if I'm sad.
I know they don't mean any harm, but I just don't have the energy to answer those questions anymore. Am I sad? If only it were that simple. Some days I'm sad, some days I'm furious, some days I'm bitter, desperate, or just completely numb. Sometimes I find myself wishing he would just pass away, and then the guilt hits me like a freight train. Other times I feel like dancing, other times I feel like dying, sometimes I wonder if this whole thing is just a dream. I wake up in a cold sweat in the middle of the night; sometimes I dream of him smiling and happy; sometimes I give up, only to find the strength to keep going again.

Maybe I'll finally process all of this when someone else happens to ask how I am.

Angela Wright said:I know exactly how you feel. When I was dealing with my 2.5g, the people I thought were my closest friends completely avoided me. No one ever called just to check in, and no one would even drop by for half an hour at a local pub just to sit and talk about nothing.
My dog was my biggest support. I had to take him out three times for fifteen minutes a day just to get things done, which forced me to redirect my focus. He was always there, just being silent.

And don't beat yourself up for wishing he would pass. There isn't a greater expression of pure love than when you set aside your own selfish humanity and wish that everyone you love stays healthy and happy forever—wishing for that kind of peace because it’s the only kind left.
I want you to be able to stay by his side until the end. He needs you. Be there for him, tell him everything will be alright, and let go. Tell him if he can't do this anymore, whatever he decides is fine, that everyone will 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 apart later, but afterward, you will feel a profound sense of peace. That is the best advice I can offer.
Hang in there and believe me, you carry a strength inside you that you aren't even aware of yet.

+1, I know that feeling all too well. It's been two years and seven months for us now, living from one checkup to the next every three weeks, waiting for the next CT scan or scintigraphy once a year... bad results throw us a step back, a good result lifts us up slightly, and we just go in circles...

That entire web of shifting emotions is something you just can't grasp unless you've lived through it with your inner circle... everyone from my mom's side is gone except for one colleague from work. For someone like me, who used to be so social and the person everyone relied on, I realized at my own wedding of 200 people that I really only had five true friends (plus ten family members; everyone else was just there because of their spouses). But through all of this, I see who the genuine people are—those who actually care. I'm grateful for that. There have been far more disappointments in people, but those unexpected moments of kindness from people I never expected anything from... they lift me up.
Asking if I'm "sad" or if things are "hard" barely scratches the surface of what I'm feeling. My husband keeps telling me he doesn't understand where I get the strength to answer everyone's questions so concisely and with a smile, but the truth is, I simply can't let anyone close enough to see the "weakness" inside me anymore...

When you're sitting there with Dad, talk to him about the things that actually bring you joy—the stuff that truly matters to you. I'm certain it means the world to him just to see that you still have something positive to hold onto in this life. Tell him you love him. Give him that sense of peace, knowing that you’re going to be okay. If he can still fight, let him fight; but if he can't... then let him go. Just so he doesn't have to suffer anymore.

Grace Ross20 said:Dad's condition took a turn for the worse, and his oncologist decided to halt chemotherapy and sent him home to pass away.

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

I realize how difficult it is to ask for advice on such a heavy matter, but I truly need perspective. Should I take him in for this surgery? How am I supposed to gauge how much of the tumor they'll actually be able to remove? They mentioned it would involve awake brain surgery.

You know deep down that, as a family, the decision rests solely on your shoulders... if I could find an option like that for my mother (Stage IV metastatic adenocarcinoma of the lung), I would pursue it in a heartbeat, provided the finances allowed it.

Angela Wright said:I understand completely. But if there is one thing I have learned from our shared experiences, it is that any attempt at advance preparation for anything rarely yields results. If anything, it only serves to exhaust me mentally and psychologically. It is better to simply deal with things as they unfold, adapting to the situation while striving to maintain maximum inner peace. Respect Dad's decisions. It is incredibly important to him that he maintains his integrity at this level, and that is likely what keeps him going.

Dear Angela Wright, I don't post much here, though I read everything regularly. You actually wrote something very similar to someone else once before, and I remember reading it when my mother was diagnosed with Stage IV metastatic lung adenocarcinoma two years ago. How difficult it was to accept and apply that advice at the beginning... yet now, more than two years later, I can truly say this is one of the best pieces of wisdom one can receive in these circumstances. Thank you for writing all of this for us and answering our questions, even though, for you, this personal chapter ended a long time ago.

Kevin Bishop10 said:While I was receiving Zometa, my doctor noticed I’d lost quite a bit of weight in just 28 days. She prescribed MEGOXI syrup to help stimulate my appetite, hoping I might partially regain some of that lost weight. Has anyone else here used this? Any experiences to share?

It has the exact same composition as Megostat, which my mother uses. She doesn't experience any side effects from it, and it really helps her appetite; without it, she struggles to eat much and often feels nauseous.

Kevin Bishop10 said:Why not? Does anyone know roughly what the consultation fee is?

About six months ago, my mother paid for $133. He went through every single piece of paperwork, ran breast, liver, and stomach ultrasounds—the whole nine yards. He spent a significant amount of time talking her through everything; he had a mountain of questions, yet he listened patiently and answered every single one of hers. If you're looking for a recommendation, he gets 👍
.
(She actually went back to him specifically for a second opinion/consultation.)

Kate Diaz55 said:Thanks for getting back to me. I actually started my treatment today—I have CA tonsils. Are you also picking up your supply without a prescription?

We haven't pulled the trigger on buying it just yet. To be honest, Mom isn't struggling much with her weight right now; over the last year, she’s managed to stay steady between 120 and 125 pounds, regardless of the Megostat. Since it isn't an urgent necessity, she’s also resistant to us throwing more money at this—especially since her husband and I are already helping her out financially now that she's retired. But if things were different? We would have bought it in a heartbeat. When she first got home from the hospital, the Megostat must have been the only thing keeping her upright, because back then, she had plummeted to about 103 pounds.

My mother is currently on Megostat, but since it’s out of stock, we reached out to her wedding godfather—who happens to be a pharmacist—to see if there was an alternative. He informed us that Cachexan is an identical substitute for Megostat, just from a different manufacturer. This was further confirmed by both her primary care physician and her pulmonologist (my mother is battling lung cancer), so there really is nothing to worry about. You can feel free to stick with the substitute until Megostat becomes available again. 🙂

For those who might be looking for it, Megastat is back on pharmacy shelves as of this week.

Nicholas Price18 said:Thank you so much!

It’s definitely no longer available in Dug Sela; apparently, they are working through some sort of re-registration process, so it should be back in stock across the entire US by September at the latest.

Amanda Miller69 said:I honestly don't know; he eats very little, and even then, everything has to be blended and finely minced... the coughing fits afterward are the absolute worst.
Beyond that, he’s just weak. He spends the entire day in bed. He can't even make it up the stairs to the bathroom anymore, so his mother has to wash him in a basin.
I suggested she look into hiring a home health nurse to take some of the weight off her shoulders.
He barely speaks; I suppose even talking feels like an exhausting effort now.

Things aren't quite at that stage for us yet—my mother is still completely independent—but reading this thread feels like a grim sort of mental preparation for what lies ahead with her...
She was diagnosed with Stage IV lung adenocarcinoma with lymph node metastases about a year ago. She went through chemotherapy and radiation, but there hasn't been any real progress. To be honest, over this past year, nothing has changed regarding the size of the tumors—not better, not worse, thank God. Her markers are nearly perfect, so we’re just praying things stay this way for as long as possible, especially since Mom is back home in the States and I'm living here in Austria.

I've read quite a few of your posts on this forum, and I truly hope that your father lives long enough to see his grandchildren grow up.🙂