Robin Diaz4 said:How is everyone doing today? My day is winding down already—mom's cold seems to be getting a bit worse, and dad had a slight fever earlier this evening, though we managed to get that under control. Tomorrow is a new day!
We’re all feeling a bit better this morning; I'm still hanging in there, but he’s really turned a corner, aside from a stuffy nose. Even my little one had that annoying low-grade fever—you know, that 99.0 range—but it broke the very same day.
It’ll pass! It's impossible not to catch a virus lately—one minute the sun is out and you're in short sleeves, then the next, it's pouring rain.
It’s going around here—lots of viruses lately. We've just been sticking to honey, lemon, and tea to get through it. It's helping. I actually went through the exact same thing about ten days ago; I went in for a routine checkup and ended up finding out I had a sore throat and bronchitis.
It really knocked us both sideways... A nasty sore throat, a constant cough—just one of those mindless viral bugs, I suppose, that hit us both at once. As for the little one, she was fine. She had a coughing fit one day, a bit of a runny nose the next, and then it was just gone. Total coma.
My subconscious really laid out the current state of affairs to me last night, and honestly—it wasn't wrong at all.. I keep having these dreams about earthquakes—one, two, maybe three in a row. In the dream, I’ve just bought a baby, and I’m frantically trying to huddle under the door frame for cover, while my husband just looks at me and says, "Why are you hiding? Nothing's going to happen." And the thing is... nothing did. It was incredibly vivid—that feeling of the very ground shifting beneath our feet. I find myself constantly searching for some kind of reassurance, some guarantee that everything is going to turn out fine. But he? He just has this total acceptance of mortality—this "whatever happens, happens" attitude. He's just completely convinced that we'll be okay, no matter what.
Robin Diaz4 said:The hardest part for me—honestly, the absolute worst part—is seeing my dad struggle to accept that life eventually has an end... just thinking about it brings me to tears right now. I wonder if that refusal to let go is actually what gives him the strength to keep fighting. Today marks his third day following his second round of chemo. He had a pretty rough couple of days—not necessarily physically, but more mentally. Sure, he feels that general exhaustion you get after chemo, but he experiences it with such profound tragedy every single time. Even a common cold hasn't helped; he caught one and is currently on antibiotics. I was thinking about starting him on some immune boosters today, but I’m honestly terrified to even try. Is it okay to use natural propolis and beta-glucan together? I want so badly for him to kick this cold quickly, but I am paralyzed by the fear that I might somehow be "feeding" the cancer by boosting his system. This disease is just cursed.
I actually started my husband on beta-glucan yesterday... He's been catching every cold going around since we started, and even the antibiotics aren't doing much to help.
Angela Wright said:Try to view this as your own personal genesis—a moment of catharsis. It isn't the hard facts themselves that weigh you down, but rather the denial and the refusal to face them. Once you reach that point of acceptance—where you realize things will unfold exactly as they must, and you choose to live right here in the present—life becomes so much lighter. Regarding faith and "proof," I’ve gone through my own version of this catharsis. I realized that an invisible hand has been nudging me my entire life; everything happens for a reason, specifically so I could become the person I am today, possessing the insights I have now. There have been moments where life truly crushed me, but those very experiences made me a better person—and honestly, I wouldn't change a single thing. Life—whether you call it the universe, God, or Mother Nature—is incredibly pragmatic, yet everything is deeply interconnected. Everything is linked, and every action has an impact. I truly hope you find peace. It's the most important thing of all.
Thank you so much for the advice and the support. I completely agree that everything happens for a reason; I’ve had my own share of "shake-ups" and total resets, and I learned so much from them. Hopefully, I'll be able to take the lessons from this whole situation as well.
Robin Diaz4 said:Are you ever truly ready? Honestly, I don't think so. I mean, I’m fully aware—really, deeply aware—that we’re all mortal and that nothing lasts forever, but losing the people you love... you're never ready for that. It’s always a shock to the system. Even if this were happening twenty years from now, I think I’d still be standing here feeling like it isn't fair, asking "why me?" I haven't figured out how to accept that part yet; right now, I'm just trying to learn how to accept the illness itself.
I haven't even processed it. There’s a seventeen-year age gap between us, so logically, you’d think he should be the one going first—but I try to hold onto the idea that life is unpredictable. Though, I suppose I never factored illness into that unpredictability. I still haven't made peace with it either. Yes, things are looking up for him, but... all of this combined just forces me to confront my own mortality. It’s frustrating, and frankly, it’s been a massive psychological weight to carry.
Angela Wright said:So, you have to face it first. Everything moves in cycles—everything is born, everything evolves, and everything eventually passes away. We exist in that space in between. And we need to truly LIVE. That's just the way our biology is wired. Those who believe in God tend to focus on a spiritual body, which they view as far more significant than this physical one, and I suppose that makes navigating these things a bit easier. I hope you're a person of faith.
A believer... Well, I wouldn't say "more" anymore, but yes. I understand how the cycle of life works—I know exactly what happens to any living organism when it dies—but as for there being a spiritual dimension? Since there isn't concrete proof, it’s honestly quite difficult to fully embrace that...
Angela Wright said:I found this study http://theoncologist.alphamedpress.o...t/5/4/293.full
Regardless of how you look at it, there's clearly a scientific foundation here—but the researchers were also very upfront about the fact that they aren't 100% certain regarding the exact radiation dosage. It's going to take more follow-up studies to really pin down those specific levels.
Personally, I tend to be extremely cautious when it comes to anything involving brain treatments—it’s just such a delicate matter, isn't it?
I'll give it a read once I can, but my English isn't quite up to par for technical papers just yet. Thanks!
He’s actually doing fine, but I’ve been hit by a wave of intense anxiety... How do you truly find peace with the acceptance of mortality? How do you prepare yourself for the reality that, one day, you’ll have to say goodbye to someone you love? Your parents, your friends, your relatives? Or even your spouse? Why does this weight settle on your shoulders so suddenly, right when you feel completely unprepared? Is anyone ever actually ready for it? Why is it that sickness exists at all? And why does death exist?
Robin Diaz4 said:The more I read about dietary supplements and immune boosters, the more confused I get—it’s almost like I’m getting dumber by the minute. For every single page praising a specific product, there seem to be x+1 pages claiming that very same thing is useless, if not outright harmful. Honestly, I’ve reached a point where I don't even know if I should be taking anything at all.
I’ve most frequently come across beta-glucan when looking into immunity (sorry if this is a bit off-topic!), but I discovered that they aren't all created equal—the length of the polymer chain actually makes a huge difference. I also learned that anemia can cause your immune system to tank; essentially, raising your hemoglobin levels helps bolster your immunity. My doctor mentioned this to me just yesterday after seeing my blood work—apparently, I'm anemic again, which explains why I've been dealing with this persistent cough and congestion. As for boosting immunity, I still swear by breastfeeding whenever possible. Now, how effective that really is, I can't say for sure—I just follow the idea that a baby's saliva communicates to my body exactly what it needs to produce and pass through the milk. It’s a similar principle, I suppose—I don't think the breast knows whether it's nursing a baby or an adult! ;-)
Angela Wright said:Go ahead and try to find any consensus regarding this "preventative" head radiation recommended by neurologists and neurosurgeons. Honestly, I’ve never even heard of irradiating the brain as a preventive measure. Brain tissue is incredibly sensitive to radiation—it can lead to nothing but necrosis. I actually attended a presentation and debate at an oncology congress where a neurosurgeon was calling out oncologists for unnecessarily irradiating the entire head; apparently, it makes it impossible to distinguish whether any resulting necrosis is caused by the radiation itself or if it's just a consequence of the tumor disease. It seems pretty obvious that the system finds it cheaper to just radiate the whole head rather than paying for follow-up MRIs every six months.
Rachel Wood27 already laid it all out for you 🙂 Preventative head radiation is actually standard protocol when dealing with microcellular carcinoma. Her pulmonologist—who confirmed this to me just today—insisted that this is the standard procedure everywhere. In fact, I've even come across cases where they didn't bother with preventative radiation at all until metastases had already formed.
Unfortunately, this little beast has a particular fondness for the brain.
I have some questions (it took me quite a while to pull myself together to ask) 🙂
What exactly is the difference between a CT scan using IV contrast—which they'll be doing for his thorax, and I actually follow the logic of why that needs to go through the vein—and a CT scan where you drink oral contrast (the one intended for the abdomen)? How is that second method supposed to show the condition of the liver, kidneys, spleen, pancreas, and so on, if it travels through the digestive tract instead of the bloodstream?
Here I am again, checking in with an update—no questions this time, hopefully 🙂
Anyway, getting a PET/CT scan isn't as simple as just asking for one; you have to go through a specialist first. My primary care physician really gave me an earful about it—she insisted that any unnecessary radiation exposure can contribute to the development of malignancies, so she'd rather I didn't pursue redundant testing. Now... well, I suppose I’ll take her word for it.
Regarding the latest blood work—to quote my doctor—everything is "satisfactory." All his blood cell counts have dipped slightly compared to the last round, but everything remains within the normal range. I picked up his discharge papers from the outpatient clinic, and she confirmed a regression—meaning there's been a positive regression of the primary process. He’s finished his fourth cycle, and before we start the fifth, they’re sending him for a CT scan of his chest and abdomen. Based on those results, they’ll decide whether he proceeds with all six planned cycles or if we stop after five. Following that, we'll look into preventative cranial radiation, though they aren't planning to radiate the main tumor in his chest—since it's considered an advanced stage—unless he starts having trouble breathing, difficulty swallowing, or, God forbid, any issues with bleeding.
On top of all that, she mentioned that while the average life expectancy for patients with this condition is typically three years, she’s seen plenty of cases where the disease simply stopped showing up on any tests at all—and that was for much longer than three years (at least, that was my question to her).
I don't have any questions for now (thank God! :-) )
Larry Scott43 said:Just a little extra advice—since you know how these things go—be prepared to wait anywhere from 10 to 12 months for a call from the prosthetics center. And when they do call, make sure you bring absolutely everything—every single piece of documentation. Also, the primary applicant has to be there in person; they actually specify that in the notice.
Honestly, it’s not about money for me. To be truthful, we have maternity leave coverage, he’s currently on medical leave, and I’m still running tutoring sessions—we almost always have a decent income just from those lessons. The only thing that crossed my mind was looking into all the one-time assistance grants available, given his diagnosis and his veteran status. Once we finally get "the beast" under control, our plan is to head to a radiosurgery clinic just outside of Chicago. If there's anything left to treat, they can handle it with a laser, and I'd love to use those one-time grants to cover at least part of that cost while we save up the rest.
Angela Wright said:It starts at the local social services center. I can't speak for everything else, but my assumption is that the procedure follows the same path as it does for children. You go to the center and meet with the social worker assigned to initiate the process—you'll need to bring all the medical documentation regarding the patient's condition—and then you just wait. They might send a notification, or perhaps an evaluation board will conduct a home visit, or they may simply issue a decision based solely on the paperwork provided. The best move is to reach out to the center directly to get the specifics.
I haven't dug too deep into the granular details, but I did a little bit of browsing. The eligibility requirements seem to remain largely the same as before—the individual must be dependent on both caregiver assistance and medical support—it’s just that the scope has been broadened to include spouses, domestic partners, and children.
Angela Wright said:It used to be pretty difficult—people just had to find their own ways to make ends meet—but as of February 1st, there’s a new law in effect that allows you to qualify for caregiver status when looking after someone with such a severe illness.
What exactly are the requirements for that? And where can I go to look into getting caregiver status? If you happen to know, of course.
Robin Diaz4 said:I was just sitting here thinking today—my dad has been home for the last week or so, and thankfully, I’m self-employed, so I can work from home or just step away if things get hectic. But honestly, how do people manage this when they don't have that kind of flexibility? My dad’s condition shifts constantly; one day he feels steady enough to head out, and the next, he barely has the strength to make it to the bathroom. What happens if there comes a moment where no one is available to stay with him? It’s unlikely, but life is unpredictable, isn't it? These thoughts have been weighing on me all day—if I hadn't been home today, I don't even want to think about what might have happened... Basically, is there some kind of service for this, or would I need to hire someone privately? How does that even work? Is there an option where a medical professional could come by when needed—someone I could pay for occasional visits, say twice a month, rather than having someone stay full-time? Or am I just overthinking things?
I'm really not sure about the second part of your question. But you should definitely check with Medicare regarding coverage for your mom and see what the rules are for caregiver leave; it's worth looking into.
As for your first point, I feel exactly the same way. I truly caught a break—being on maternity leave meant I could stay home and run drills, which allowed me to organize my own work schedule. That same worry crossed my mind recently, but I just felt so grateful to God that the baby arrived at just the right time. I honestly have no idea how people handle this when they’re forced to commute to an office every day.
stormyfalcon68 said:ruggedfox11; You can get a PET/CT through Quest Diagnostics—just like Anthony Rodriguez7 mentioned—using Medicare coverage. Give them a call to set up an appointment; honestly, you don't even have to wait nearly as long as you usually would in this sluggish, slow-moving city we live in.
I actually managed to get a hold of them! They accept the red referral forms, though my wife did mention that I need to bring all of his medical paperwork with me when I go in to finalize the appointment time. Thanks everyone! :-)
Anthony Rodriguez7 said:ruggedfox11, do you guys use Quest Diagnostics over in St.? They just renewed their contract with Medicare, and they actually reached out to us about my dad's appointment—though we had to push it back because of how he's doing lately. They told us to just give them a call whenever he's ready.
We do. So that means it should be covered through Medicare.