It’s been quite a while since I last posted anything here... Things are holding up okay on our end—his nausea from the chemo finally started to let up yesterday, which was such a relief. We’re feeling a bit of a chill lately, though—the wind has really started picking up out here.
On another note, does anyone happen to know if a husband who is both an oncology patient and a veteran might be eligible for any kind of one-time financial assistance?
Angela Wright said:Position yourself so that you can tell him you'll respect whatever he decides—you’ll stand by him because you trust he’s weighed all the consequences of his choice. He might tell you he’s done for good, but believe me, fear is a much stronger motivator than pure stubbornness. Don't stress too much about things falling through. Just stay quiet and keep swimming your own way.
It honestly never even crossed my mind that fear could be a bigger factor than just being stubborn.
Honestly, I think hanging out with friends and just having a good laugh does him more good than any Xanax or doctors ever could. To be perfectly honest, I can’t even begin to imagine being in his shoes... I feel like I’d just crawl into a dark hole and hide. But then again, those few days would probably just drain my brain dry.
She transcribed his Xanax prescription, but he just won't take it... Honestly, I wish he would—it’s just that he really didn't want to deal with a psychologist back when he needed to confirm his PTSD for his disability pension, so the idea of seeing one now is completely out of the question for him.
I get this feeling that I'm just talking to a brick wall during those few days when I finally get a hold of him. Normally, he goes out, hangs out with people, and lives life just like he always has—completely normal—but in those specific days leading up to and following an episode, he becomes impossible. I find myself repeating the exact same things over and over again, trying to compare his behavior to other conditions or untreated illnesses, and eventually, I just shut down. I simply step back and let him ride out his own storm. As for me... well, I've actually been considering asking my doctor about some psychological support for myself. I've been struggling with forgetting even the most basic things lately—literally everything has to be written down on paper or it just slips my mind. I do still go out and socialize, of course; I have to, because I can't stay cooped up in the house all day, but they aren't the kind of people I could ever open up to about something like this. That's why I'm posting here.
I know it’s Easter for everyone right now, and I realize you all have your own struggles to deal with, but... I really need some help here because I feel like I’m about to snap. Poceja is constantly losing his footing—it's just constant turbulence. One minute he’s refusing therapy, the next he’s acting like he’s completely done with everything, or he’s just being driven by some restless energy, or dropping something dark and depressing every single day. When he gets worked up—whether it’s after a session because the nausea from the side effects is getting to him, or even right before the appointment because he's already agitated—everything just becomes a trigger. Everything irritates him. I honestly don't know how to handle him anymore. No matter which way I turn, I can't get it right. It feels like I can't reach him—like he isn't even truly grasping the reality of the illness. On some days, it’s as if he simply doesn't care at all. It gets to the point where I just want to curl up and walk away.
So, we’re just waiting for things to warm up a little more. This will actually be his first trip to the coast in about 20 years—honestly, I have no idea how he manages to hold out this long. If it weren't for being by the ocean, he would probably be dealing with some major sinus issues right now. But this one is all mine.
Robin Diaz4 said:ruggedfox11, I can't quite remember if I asked you earlier—is your husband back home now, or still at the hospital? And what kind of nebulizer are you all talking about? (Goodness, there is still so much I have yet to learn)...
He's home now :-) He goes into the outpatient clinic for his chemo sessions. He actually spent 20 days in the hospital before we got the diagnosis, and he stayed put until he finished his first round of chemo. Since then, he’s just been heading in for day treatments.
Regarding the nebulizer—it's one of those devices you typically see in doctor's offices or hospitals. Personally, whenever my bronchitis flares up, I head over to my physician, and they'll hook me up to one for a bit; it really helps clear things out. He's pretty easygoing about going to see his doctor, but since you shouldn't try inhaling hot steam at home, I went ahead and bought him an electric one. It'll probably come in handy for me too, and hopefully for our little one down the road, God willing.
Angela Wright said:Do you guys use one of those compressor nebulizers, or how do you handle it? For those specific irritations, inhaling a hypertonic solution can really help—definitely give it a shot. You can actually pick it up over the counter at any drugstore without needing a prescription. It’s essentially just regular saline solution, but with a higher concentration of NaCl.
Using a compressor nebulizer is honestly a total game-changer! My only concern is making sure the heat doesn't cause any internal damage within the bronchi or lungs—you know, like if it interferes with the healing process or messes with a fresh wound area, or something along those lines.
The stuff they give you in the clinic is usually some sort of cocktail involving Ventolin and a few other things—it's actual medication. Personally, whenever I'm dealing with bronchitis, I prefer using Bisolvon or Bisolex through the nebulizer.
I just wanted to double-check—can I find that hypertonic solution at a local pharmacy?
We’ve just finished his fourth cycle of Chemo today. He’s feeling a bit nauseous, but overall, he’s doing alright...
People were driving me absolutely crazy yesterday—honestly, I can barely even remember what I wrote earlier... Anyway, the doctors gave him some kind of "vial" ampules for inhalation to help with bronchitis, which should hopefully cut down on the coughing a bit. I have this theory of my own—since the lower lobes of his lungs were being blocked by the tumor, now that it’s finally receding, it's essentially clearing the path for those lower sections, and I suspect that might be another reason why he's coughing so much.
Does anyone know if it's okay to take Advil for the nausea, or maybe some Pepcid?
Today marks the first day of his fourth round of Chemo. The blood work came back looking extra good—the markers have dropped quite significantly; the NSE went from around 400 down to 69, and the LDH dropped from about 500 to roughly 250. :-) His doctor is being difficult again, but the one who actually adjusted his treatment told us that after this fourth round, they’ll run a CT scan and then let the specialist team decide on the next steps for his treatment plan. I’m feeling a bit lost here—who do you even complain to if the radiologist refuses to approve preventative brain radiation, which is standard protocol for small cell? Should I push his doctor harder? Make a scene? Pull some strings?
By the way, his cough is just lingering from bronchitis, so he’s getting another inhaler and some drops for nebulizing. If anyone has any suggestions for something effective, I’m all ears. :-)
On another note, we dealt with more rudeness from the medical staff today. The doctor that the nurse called over to prescribe his meds spent her time chatting away with a colleague instead of focusing. When she finally showed up, she actually stated she "wasn't going to bother examining him"—clearly referring to my husband. And when the doctor who actually performed the exam arrived, she asked if we thought we should grab a chair for her... as if she hadn't just finished gossiping! Honestly, I wasn't even angry, just stunned that someone who spent all that time chatting was supposedly there to treat patients. It was just incredibly unprofessional.
It’s just exhausting. I really want to hold them accountable for a little longer. People aren't machines, you know... it’s just terrible how they act.
Angela Wright said:When dealing with issues like this, nothing works quite as well as talking to someone who has actually walked that path and made it out the other side. Try asking around your circle or even inviting someone over for a visit.
I know, but... honestly, everyone we know who went through microcellular treatment—and I mean both of them—has passed away. My uncle isn't exactly local, and he’s just not the type of guy to open up to strangers. That’s why I actually find his days at the Chemo clinic to be the most helpful; since it's always packed during the day, he ends up listening to people's stories and their struggles, yet somehow, he always comes back feeling energized by all that positivity. It's almost like they all provide this unspoken mutual encouragement for one another.
Bas, it’s almost like they’re going in for a spa day or something :-)
I’ve been trying to explain it to him too, but honestly, I feel like I’m talking to a brick wall. The other night, I actually suggested he just open up some books or search Google so he can educate himself—you know, read up on his own condition. It really is heartbreaking when you see a naturally active person being broken down by an illness, only to spend all their time staring at nothing but bad news online. My husband went through something similar a while back after a motorcycle accident—he ended up with a prosthetic knee, spent six months stuck in bed, and then had to grind through endless physical therapy... it took two whole years to get back to his old self. But now, when I try to draw a parallel between that recovery and what he’s facing with this current illness and treatment, all I get is, "That’s not the same thing, just let me be—let me go outside, see what's happening, and leave me in peace." Ughhh.
And don't even get me started on the idea of a psychiatrist—God forbid! He wasn't exactly keen on dealing with any of that paperwork when it came time to file for Social Security, so there's no way he's interested now. Dealing with those moods and the constant negativity really drains my energy more than anything else, but hey, at least if I can nudge him back onto the right track, it’s worth it. :-)
I know exactly what you're going through. We went through the same thing—both before and after the third round—that constant, heavy sense of anticipation, wondering what the results will show and how much the numbers might have dropped. The night before the fourth session, we didn't sleep a wink; there was just this restless anxiety and that underlying fear regarding the first follow-up check. Honestly, it felt like the first day of school all over again—that specific kind of nervous energy where you're terrified of being late even though you're prepared :-) But once you see that improvement on the scans, the only question left is really "how much did it shrink?" :-)
We’re actually starting the fourth round tomorrow. He is just so incredibly frustrated with the whole process—everything feels like it's moving at a snail's pace, and he keeps grumbling about wanting to just throw in the towel and be done with it all. He’s still coughing, too, though it does ease up a bit once his nose is clear and he uses his nasal drops. We'll see what the doctor says about the cough tomorrow, though I did mention to them that it might just be one of those lingering side effects from the chemo.
Robin Diaz4 said:ruggedfox11, you sound exactly like my dad. He starts panicking left and right, but the second our doctor pulls into the driveway, suddenly everything is just fine—he claims he isn't in any pain at all if you ask him. Then there I am, standing off to the side feeling like some sort of Gestapo officer, trying to explain: "No, he's lying, I called because he specifically said he was hurting!" And then he acts like he just "remembered"—as if—"Oh, that? Well, it hurt for a second, but it's gone now!" It’s all just out of fear that we might actually end up sending him back to the hospital.
Come on, such a little rascal... That's why he insisted on using his nasal spray last night—so he wouldn't end up like he did the night before. :-)
Robin Diaz4 said:I am so incredibly happy to hear some good news! Over here, we are just counting down the days until his third cycle... My dad actually managed to get some decent sleep last night—no racing thoughts, no restless tossing, no night sweats... he even told me himself that he’s feeling pretty great today.
Come on, finally! Let him get the rest he truly needs. We are waiting on the fourth round this Tuesday. But the night before last and last night? It was a complete nightmare. If he wasn't on oxygen, we would have had to hook him up to a concentrator. He woke up in the middle of the night gasping for air, hit by this intense coughing fit—it was terrifying. This morning, we were rushing to see his pulmonologist—which sent my wife into a total panic—and then straight to the primary care doctor. I could barely convince him to even go in, and then she tells me his nose is just congested and she's overreacting. She really was! But he did end up getting seen; it turns out he has an inflamed throat, sinus issues, and bronchitis. He's starting him on some antibiotics now.
Man, I’ve actually been reading up on this lately...
If I remember correctly, they use this method over in Germany—basically maintaining a body temperature of around 104 to 105 degrees Fahrenheit for a set period.
I really wish this worked for every single type of cancer out there.
I'm definitely going to bring this up with my husband's doctor and see what they think about it.
Rachel Williams said:So, here’s a little bit of good news—a friend's mother was diagnosed with small cell lung cancer about 15 months ago, and just yesterday they received a completely clear CT scan. Her tumor markers are stable, and the medical prognosis is sitting at about 65% that she will never have to deal with cancer again.🙏
That is such wonderful news!! I'm getting goosebumps just reading this.
I honestly wish my mom could have a report like that—just to finally defeat this beast and know it won't ever come back for her.