Posts by Rachel Williams

Dear Robin Diaz4, please accept my deepest condolences for you and your family. No matter how heavy this feels right now, perhaps there is some small measure of solace to be found in knowing he is no longer suffering and is finally free from pain.

Robin Diaz4 said:Dad was supposed to go in for his final chemo session today, but they pushed it back a few days because his blood counts were looking pretty grim. He had a transfusion, so physically he’s feeling a bit better. Mentally? Not so much. 😢

What exactly went wrong with the blood work? If we have any insight that might help... there are more of us here to weigh in. 😉

Terry Lopez18 I was reading through your story and your family's journey... I am so sorry it ended this way. I imagine things feel incredibly heavy right now, but I hope you can eventually find some peace in knowing he isn't suffering anymore. 🙂

The treatment protocols for small cell lung cancer and adenocarcinoma aren't even in the same ballpark.
Robin Diaz4 Your doctor mentioned it as a potential option if things go that way. It doesn’t mean they’ll definitely go down that path, nor does it mean they won't; we just have to wait for the CT scan results before we know anything for sure.
In our experience here in the States, the process looked like this: once the diagnosis was confirmed, she did four cycles of chemo, followed by six months of nothing but check-ups. Then came the lung radiation—about ten sessions. After nearly a year and a half, there was another round of radiation, though much more intense this time, targeting the pelvic area. In between all of that, we had follow-up appointments every three weeks, an annual brain CT, an annual abdominal CT, and an annual bone scan. Of course, if any new issues had cropped up, those scans wouldn't have been limited to just once a year, but my mother is a walking miracle, so this schedule has been sufficient for her—and I truly hope it stays that way. 🎉🎉🎉

Robin Diaz4 said:wearyskipper20, hang in there. I really hope they can manage her pain levels effectively...
My dad finishes his first line of chemotherapy next week, and then it’s just the waiting game until the CT scan. The only thing keeping my spirits up right now is seeing how well he recovers after each session, despite the occasional setbacks with anemia. The doctor brought up the possibility of radiation or moving to a second line of chemo today. In the meantime, I’m still digging through clinical trial data...

Beets, apple, carrot, honey, and lemon juice in a blender—just a little bit every day. That was our go-to recipe for iron when Mom was going through chemo. Both the first time and again recently, her blood work actually came out better than mine.

Use Rehydralyte to prevent dehydration. If the vomiting persists—say, every 20 to 30 minutes, or if it happens more than eight times in a single day—you really ought to call 911. They’ll likely administer an injection of Reglan, which, in my experience, works far more effectively than trying to force down tablets.

Robin Diaz4 said:I have another foolish question because I was truly frightened today... is it actually possible for doctors to falsify results just to avoid upsetting a patient or their family? Is that even allowed? My father’s union rep told me that they used to write on follow-up CT scans that a disease was stable when it was actually progressing, all to prevent the patient and family from panicking. And honestly, that thought alone is distressing. Is there really a chance I won't even know my father's true condition? I can try to look at an X-ray, I suppose, but this abdominal ultrasound report—where they noted the targets are in regression—is just a collection of blots on paper to me until tomorrow. As for the CT scan, I haven't the slightest idea what it looks like, let alone how to interpret it.

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They wouldn't do that to you at Jordan. Unfortunately, through my own experience, I've met enough doctors, female physicians, and nurses there to last three lifetimes. There are plenty of old negative stories floating around about that place, but truthfully, for at least the last six years, they have deserved nothing but praise. Sometimes they might rush through conversations with patients because the volume is simply overwhelming, and they occasionally provide vague answers because they forget that patients and their relatives aren't medical experts, but they are as honest as it gets. Specifically, when my mother was diagnosed with cancer, the doctor requested that I come in personally so we could discuss everything. I asked so many pointed questions that by the second day, the woman asked my mother if I was a medical student. 😲 No matter how much I tried to fish for some trace of hope or positivity through my questioning, the doctor remained completely candid and open with me. I can confirm that same experience with everyone else I've encountered there.

rustyraven29 said:My first thought was actually to grab her something on art history😁

I don't know a ton about it, but from what I can tell, she isn't exactly thrilled about "school"... (the grandparents will probably try to shove her into some fancy private prep school eventually), she's more about makeup and fashion...

so maybe a Bible would be a safe bet. No one can really argue with that choice...😁

If that’s the case, wouldn't it be simpler—or even a better shot—to just buy some makeup? I'm not sure where you're located, but if you're in New York City, brands like Nyx, Mac, and Sleek are everywhere right now. Maybe put together a little kit with a neutral eyeshadow palette, a nude lipstick or gloss, and tuck it all into a nice makeup bag. In my opinion, the Bible is more appropriate for a First Communion, but honestly, I wouldn't be surprised if she receives several copies. Based on how she is, a makeup set would probably resonate with her much more; it's what would actually make her happy.

Robin Diaz4 said:I’m with ruggedfox11 on this one—they really should request a head scan just to be safe... My dad is scheduled for a General Electric scan after his next cycle. Now, here is the question: when he goes in for the scan, does the head imaging happen automatically, or do you have to specifically ask for it? Forgive me if this sounds like a rookie question, but I am honestly just lost here. 😢

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Unless I have you confused with someone else, you’re at Beverly Hills just like my mother is. When she gets sent for her General Electric scans, they are highly targeted. Usually, it’s just a once-a-year thing where they do a head scan and an abdominal scan.

Robin Diaz4 said:I haven't checked in for a while. Nothing much has changed, though time seems to be moving strangely. Physically, my dad is doing better, but mentally? He’s spiraling. It's incredible how negative one person can be. It's almost as if he wakes up every single day with a personal mission to find a reason why there's no hope left for him. Of course, he still insists I'm lying about his diagnosis because I can't predict exactly what will happen once he finishes these four rounds of Chemo. If his doctor tells him the same thing, then apparently we're all in a conspiracy together just to deceive him. I've run out of ways to lift his spirits... I can't even begin to fathom what it's like to be in his shoes, but I'm terrified that with this attitude, he won't make it far. And that thought haunts me.

Ugh... I'm so sorry... I have a friend who's been dealing with a mother exactly like that for years... Hang in there, everyone. Don't let his negativity pull you down with him.🙂

I don't have any profound advice or brilliant insights to offer, mainly because my mother's temperament is worlds apart from the men you guys are dealing with. I just wanted to reach out and send a virtual hug to help you all hold steady. 🙂

And regarding @ruggedfox11/">@@ruggedfox11, I was prescribed Xanax (three 0.25mg doses) a while back for other reasons, and it was a nightmare. It felt like I was slipping into an even deeper coma than usual, so perhaps it might actually be for the best if they decide against taking them.

ruggedfox11 said:It’s the first day of the fourth round of chemo.
The blood work looks incredible; the markers have dropped quite significantly. NSE went from about 400 down to 69, and LDH dropped from roughly 500 to around 250. :-)
His doctor is back to being difficult, but the one who adjusted his treatment told us that after this fourth round, they'll run a CT scan so the team can decide on the next steps for treatment.
Who is there to complain to if the radiologist refuses preventive brain radiation, which is standard protocol for small cell?
Should I pressure his doctor? Make a scene? Pull some strings?

By the way, his cough is just from bronchitis; he’s getting another inhaler and some drops for inhalation. If anyone has any suggestions for something effective, I’m all ears. :-)

On another note, we dealt with the typical arrogance of our doctors again. The doctor the nurse called over to prescribe the medication spent her time chatting away with a colleague instead of focusing. When she finally showed up, she stated she "wasn't going to examine him," referring to my husband. And when the other doctor—the one who actually examined him—asked if we thought we should offer her a chair, it wasn't because she came here to chat. I’m not saying five or six times that since she’s been chatting all this time, she probably came here to gossip rather than actually treat people. It’s infuriating.

Pathetic, truly pathetic. I’ll be pulling their permits for a little while longer. They aren't machines, you know... It’s terrible.

But thank God for my way of speaking. :-D

Thank God for your way of speaking... I have to agree... sure, there are exceptions, but most don't deserve the grace.🙂

For bronchitis or pneumonia, homemade bay leaf syrup always worked wonders for my cough.

ruggedfox11 said:That is incredible news!!
Just soak it all in.

How I wish my dad could have had results like these—to finally beat this beast once and for all so it never comes back.

Keep your chin up. We take it one battle at a time until we win—for ourselves and for our children too. 🙂

Here is a bit of good news for once. A friend's mother was diagnosed with small cell lung cancer about 15 months ago, but yesterday they received a completely clear CT scan result. Her tumor markers have stabilized, and the medical prognosis is sitting at around 65% that she will never deal with cancer again. 🙏

Robin Diaz4 said:I’ve been sitting here thinking about it today—Dad has been home for the last week or so. Fortunately, I’m self-employed, so I can work from home or just step away when things get chaotic. But how do people manage this if they don't have that kind of flexibility? Dad’s condition shifts constantly; one day he’s steady enough to handle a normal routine, and the next, he barely has the strength to make it to the bathroom. What happens if there’s a moment when no one can be home with him? It’s unlikely, but life is unpredictable, isn't it? These thoughts have been circling my mind all day; if I weren't home right now, the mere thought of it would terrify me...
Basically, is there some kind of service for this, or do I need to hire someone privately? How does that even work? Is there such a thing as a medical professional who comes by only when needed—someone I could pay to visit, say, twice a month rather than having them stay full-time? Or am I just overthinking things?

I'm currently in Austria, while my mom is on her own back in a major US city. On the good days, she's fine. But when things take a turn for the worse, a cousin will stop by over the weekend, or an aunt will drop in during the week to look after her. In theory, yes, it would be ideal to hire someone on an as-needed basis, but my mother would be the first one to lose her mind if a stranger were constantly in her house or if she had to rely on someone she didn't know.

Robin Diaz4 said:I find something new to worry about regarding him every single day, but on days like today, it feels almost impossible. It looks like he’s been trying to eat his way through the depression; he ate an incredible amount today. Rachel Williams, I agree that your mother deserved that book, and I'll maintain that a positive mindset is worth more than any medication. What good is the best medicine in the world if you just give up on yourself?
So, I have a stupid question. My dad is starting a cisplatin and gemcitabine chemo protocol. The doctor explained that he gets one dose the first week, a different one the second week, and those two together make up one cycle. Then there's a two-week break before the next round. He's scheduled for four of these cycles. My stupid question concerns the dietary supplements we use, which aren't usually recommended during chemo. Does that mean he can only take them during those two-week breaks, or should he avoid everything entirely until all four cycles are finished? I couldn't find an answer to such a simple question online, and my doctor seems to think all these supplements are just nonsense and nothing should be used. We are currently using native propolis and beta-glucan.

As for native propolis, I don't know much about it other than how highly people praise it, but my mother has severe allergies to bee products, so we didn't even bother trying it. Now, regarding beta-glucan, I was immediately drawn to it because I read so many positive things, so I went to discuss it with my mother's primary care physician (who is actually quite open to alternative options). What she told me was that she thinks there isn't enough research on these things. While it's a powerful antioxidant and promotes cell regeneration—or something along those lines—and might benefit healthy cells, she would rather not use it for fear it might also encourage the growth or multiplication of tumor cells. That was the gist of her explanation; it really boiled down to the fact that she wouldn't dare try it herself due to the potential risk of tumor growth. I still find myself wondering whether we should try the beta-glucan or not, but my mother trusts her doctor's opinion, and I don't intend to force her into anything.

My mother is the type who believes in Western medicine, yet she doesn't reject help from alternative sources either. So, what we are using during chemo and radiosurgery is Zeolite (which helped with her nausea—she only vomited once after the last chemo session, and otherwise, there wasn't even a hint of nausea), Taheebo tea, and Gurana tea, drinking about a liter of each (though she never actually drank that much, she certainly tried). At the hospital, they told her to drink as much of these "healthy" teas and water as possible on the days of chemo and for a few days afterward to flush everything out of her system as quickly as possible. Additionally, we are using RS oil, which is even mentioned in official documentation. The opinion of the doctor in our Small town, USA, and our primary care physician has been positive on this matter, especially since my mother is cooperative; if the need arises for repeated chemo or radiosurgery, they know she won't refuse treatment.

Robin Diaz4 said:*Rachel Williams*, thank you for sharing this story. Tales like yours are incredibly encouraging. I wish my father had that kind of resilience, but unfortunately, he doesn't. If he hears even one negative story for every ten positive ones, that single negative account will crush his spirit for the entire day. Take today, for instance. A friend stopped by to visit him while I was at work, and the idiot proceeded to rattle off at least ten examples of people who have died from various types of cancer over the last year. What an absolute moron. Instead of my dad being in good spirits because a friend visited, he’s spent the whole day staring blankly into space. Honestly, I’d love to give that guy a piece of my mind.

Honestly, I could write an entire book about my mother’s strength—maybe even build a monument to her for her children. This is already her second bout with cancer; the first was back in '98, breast cancer that had already spread to the lymph nodes. They barely gave her a fighting chance. They had to remove the breast and some lymph nodes, which left her arm with limited mobility. She endured six cycles of chemo and 30 sessions of radiation, and she didn't just pull through—there wasn't even a trace of cancer left until this summer, when this new thing appeared on her lungs. And yes, it would be a miracle if she recovers from this now, but then again, it's a miracle that she's even standing today. 🙂 When they first confirmed the diagnosis, we both broke down crying. Afterward, we went to the hospital cafeteria for the best coffee in the city and made a pact: we’ll keep moving forward together, heads held high, just like we always have. She wants to live to see her grandkids grow up and play with them, and whatever she sets her mind to, happens. 🎉

She used to work in a building that was confirmed to be riddled with asbestos. Without exaggerating, over 80% of the people there developed cancer, and very few are still alive. Even with top-tier doctors, the most critical factor in this battle is your mental state and your will to live—as long as that holds up. Find things that will bring your father joy and fill his mind with those thoughts, so he can find the willpower to keep pushing forward for as long as possible.

I’m just dropping in to offer some support. Honestly, I don't have much specific news—good or bad—to report, so I usually stay quiet, but I am here every single day reading through all of you.
To be truthful, it has actually surprised me how many of us have checked in lately because a loved one is dealing with lung cancer. 😢I hope that sharing my mother's journey might offer even a tiny shred of hope to someone else... even though it was caught at Stage IV, we have been pushing through for nearly three years now. The cancer hasn't spread further into her lungs, there are no metastases to other organs, just those initial ones in the lymph nodes in her neck, and over this time, it has reached the bones. Despite all that, Mom is completely independent. It goes without saying that I am incredibly proud of her and her mental strength, beyond words. ❤️

ruggedfox11 said:Is it possible that the side effects from chemo are only hitting him now? He received his last dose for this cycle just this past Saturday. Today, he’s complaining about nausea, dizziness, and weakness in his legs. His head was pounding earlier this morning, but the Advil finally knocked that part of it down. Is this delay normal?

Is it even possible? Could it really be?🕺

Robin Diaz4 said:I can say for myself that I’ve completely optimized my mindset; I don't surrender to any more "forecasts." Following the advice given here, I simply refuse to think about the future beyond tomorrow's lunch, work, or basic errands... In the present, I only care if things are going poorly right now (like they were yesterday) or if I can actually find something to look forward to (like today).
Yesterday, my dad didn't get his pain meds until after the agony had already set in, and it took five agonizing hours before the relief finally arrived... Today, however, he finished his second round of chemo without any pain, which left him in an incredibly good mood. He ate a massive meal—honestly, even more than I did!—and he finally managed to finish that little bottle of nutritional drink he’s been refusing since he was admitted to the hospital. We're taking him home tomorrow, and if everything stays on track, he should be back in his own bed by the next chemo session.

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It’s wonderful that he gets to go home 🙂 Your spirits will all lift immediately once he's back (been there, done that) 😁 and I truly believe he'll feel much better being back in his own space 🙂

Larry Scott43 said: Rachel Williams might be right, but I felt like my visitors were just putting on an act. One would laugh while the other sat there in silence. They all played along, pretending everything was fine, and honestly, I find myself agreeing with that vague medical cliché: "it’s different for everyone."
Day 1384 since my stroke.

👍 🙂

Someone mentioned earlier about not being fake, which I took for granted... obviously our inner circles know us best. I can't even pretend to be someone else when I'm on the phone with my mom, let alone in person. We really need to put in the actual work ourselves if we want to truly help those we love. Real support means showing up authentically, not just playing a part.