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

Things aren't looking great on our end. I met with his surgeon today, and the news was heavy—the disease has progressed to the second or third stage and spread to the lymph nodes. This means chemotherapy and intensive oncological treatment are now the next steps.
The surgical team had two choices: either install a gastrostomy tube or perform the procedure they eventually opted for, where they excised the affected area and reconstructed the stomach to function as an esophagus, just so he can actually eat on his own.
Predicting the outcome is impossible, according to the doctor; all we’ve really done is buy him some more time with a decent quality of life.
I told my mother-in-law, and she is absolutely devastated. I'm terrified of how they’ll handle all of this, especially once the chemo starts. My husband and I are 93 miles living quite a distance from them while we manage our jobs, so we’ll step in and help whenever we possibly can. His sister-in-law lives in Sweden; I'm not sure if she'll make the trip or not, but I did suggest she come over since she's a nurse (though she isn't working at the moment), and she'd be the best person to help care for Dad.
Dad likely doesn't know the full extent of it yet. We're going to let the doctor decide how much information to give him and when.
It looks like we're in for a fight. There's no other way around it.

I could also use some guidance regarding oncologists. Should I head over to the MD Anderson Cancer Center? I actually have a connection there through a former student who helped me out with my care at Mayo Clinic, though I haven't heard particularly glowing reviews about their specific oncology department. Alternatively, does Mayo Clinic even have a dedicated oncology wing where I should continue my treatment?

Oakwood falls under the jurisdiction of Rebro... and honestly, you know my take on the Institute. Just use your head—how reliable is that connection really going to be when it comes to getting what they need, right when they need it, and in any decent shape? I'm not going to spoon-feed you the answer... stop listening to that nonsense.

Angela Wright said:Jordan is under the jurisdiction of Rib... and honestly, if you want my two cents on the Institute... well, just use your own judgment on how reliable that connection actually is when it comes to getting everything needed, right when it's needed, and done properly. I won't spell it out for you; just read between the lines.

I’m aware. I’ve been reading through the "old thread"—the first part of this discussion—and neither the Institute nor Jordan gets any meaningful mention there.
If there's a better option out there somewhere, then by all means, let's find it.
I understand that doctors have to detach themselves emotionally; that doesn't bother me. Even today, my doctor delivered the news with the same clinical detachment one might use for a weather report, but at least he's doing everything humanly possible for my father-in-law.
It seems I wouldn't have even bothered looking for an alternative if he hadn't reached a point where he couldn't even eat, let alone survive until his surgery at Oakwood. The doctor told me, and I saw it with my own eyes during dinner at my father-in-law's place.
My sister-in-law should be back in a week to stay with the parents, so hopefully, things will be a bit more manageable once he's discharged from the hospital.

I’m not sure if you really caught my drift here... basically, oncology treatment over at the Jordan facility is handled exclusively by pulmonologists for lung cases (which seems totally backwards to me), while everything else gets sent straight to the main oncology department at Rebro. Since I’ve been making frequent trips to that new green and white building lately, I can tell you firsthand that the outpatient clinic there is night and day compared to the old setup they had down in the basement of the main building. The vibe is actually pleasant—plenty of seating, music playing in the background... I don't know, Rebro has always felt more reliable to me. They have more doctors on staff, and at the end of the day, it is a Mayo Clinic level institution. But hey, that's just my take, and it really comes down to what you would do if you had a connection somewhere else. You might want to look into where treatment could start sooner, especially considering everyone's vacation schedules. If having a contact at the Institute means jumping the line to start oncology treatment immediately, then that’s definitely something worth weighing. There is absolutely zero time to waste.

Angela Wright said:I’m not entirely sure if you caught my drift... basically, oncology treatment over at the Jordan facility is handled exclusively for lung issues by pulmonologists (which seems a bit odd to me), whereas all other diagnoses are treated at the main oncology department at Mayo Clinic. Since I’ve been making quite a few trips to that new green and white building lately, I can tell you that the outpatient clinic there is incomparable to what used to be down in the basement of the old main building. The atmosphere is actually quite pleasant—plenty of seating, some music playing... I don't know, I've always felt Mayo Clinic inspired more confidence; they have more doctors on staff, after all, being a major teaching hospital. But that's just my take, and obviously, it depends on how you would act if you had a connection somewhere else. It might be worth checking where treatment could start sooner, considering everyone's vacation schedules. If that contact at the Institute can fast-track the oncology treatment, that's definitely something to weigh. There simply isn't any time to waste.

Initially I wasn't, but now I am. I’m going wherever he can get better treatment, faster.
He’s still in the ICU right now; tomorrow he might move to a ward where he'll stay for at least another week or two, and then I'll take him straight to oncology immediately afterward.
I'm also planning to follow up with my contact at the Institute.
The hardest part is that the family is looking to me for miracles and constant reassurance that everything will be fine, as if the outcome rests on my shoulders. My husband is managing okay, but we have to carefully "package" the information for my mother to avoid an absolute meltdown of tears and drama. I’m mostly just dreading the moment my father gets home and starts up with it, even though I’ve already told her she absolutely cannot do that... otherwise, I'm in for another exhausting ordeal.🙄

Amanda Miller69 said:man, I am dreading this part all over again🙄

Hang in there, Zachary Howard2—you've got this!
Just know we're all rooting for you and keeping you in our thoughts!

Amanda Miller69 said:I wasn't originally, but now I am. I’m going wherever he can get faster, better treatment.
He’s in the ICU right now; tomorrow he might move to a regular ward where he’ll stay for at least a week or two, and then we’ll head straight to oncology.
I also need to talk to my contact over at the Research Institute.
The worst part is how the family expects miracles from me—they want me to guarantee everything will be fine, as if it all rests on my shoulders. My husband is holding up okay, but we have to "package" the news carefully for my mom, otherwise, it'll be nothing but tears and drama. I'm just terrified that once Dad gets home, she won't be able to stop herself, even though I told her strictly not to... I'm dreading the fallout.🙄

Look... listen, just tell them the truth, or at least a version of it. Tell them, "This is the situation, this is the plan, and we'll see what God decides." There are no guarantees in life, period. Always emphasize that you acted immediately and didn't wait, because waiting would have made things much worse. I read somewhere that aggressive tumors like this often respond well to radiation. In my opinion, there's still a real chance to get this under control and give him more quality time.
And hey, I know he's your father-in-law, but please, don't carry this weight like he's your own parent. You've already carried your fair share of crosses; be the support system for everyone else, especially your husband, but do not let yourself get swallowed up by this more than is fair to you. Don't let that happen out of habit. Just remind them that you've dealt with bad experiences before—like when you were dealing with that tenth diagnosis—so at least you know exactly who to call when things hit a wall. That's all there is to it.

casualhound said:Hang in there, Zachary Howard2!
We're all rooting for you!

Much appreciated.

It’s honestly exhausting to witness all this suffering. I was at the hospital today, and seeing my father-in-law in such a state is just heartbreaking; his condition looks terrible, and the pain he’s enduring is even worse. To make matters worse, he can't clear any of the congestion from his lungs, and the nurse just gave him this dismissive, "Well, you just have to cough it up yourself" attitude. The poor man can barely take a full breath without agony, let alone muster a productive cough. I eventually had to insist she call the doctor so they could perform a bronchoscopy today to clear it out. He hasn't slept in two nights; they even had to move him back to the ICU last night.
Are these levels of pain actually normal following such an intensive surgery? He’s grimacing with every single movement. I don't recall my own mother ever struggling this much after her procedures.
When I finally stepped out of his room, I just broke down. Seeing someone suffer like this hits me harder than I care to admit.
Damn this disease.

Zachary Howard2, I am so incredibly sorry you're going through this. It's gut-wrenching watching someone close to you suffer like this. I've dealt with my own share of crap, so I get where you're coming from. I don't even know what to say to make it better, other than hoping your father-in-law finds some peace and less pain, and wishing you guys all the strength in the world to get through this hell.

For God's sake, someone give him something for the pain! They've honestly lost their minds.

Angela Wright said:Honestly, they should just give him something for the pain! They’re acting completely irrational.

His sister didn't even offer him anything until I finally snapped at her. She actually had the nerve to ask, "Do you guys need anything?" As if he's enjoying being in this much agony. 😠
My husband was visiting him this morning and mentioned he's feeling a bit better, mostly because they finally drained a massive amount of that secretion—it could have been fatal if I hadn't insisted they deal with it immediately 😠.
My husband spoke with the surgeon, who essentially gave him the standard "he's an older gentleman, so recovery takes longer" speech.
Fine, I get that. But then have the decency to manage his pain medication and sleep aids proactively. I shouldn't have to play nurse and demand basic comfort for him, especially when he’s in such a state that he doesn't even have the strength to advocate for himself.

My brother-in-law has been acting like a completely different person since yesterday—totally unrecognizable in both mood and demeanor. It’s as if he’s a stranger.
They ended up draining about half a liter of fluid from his lungs; apparently, it was such a mess that they had to suction it out because he simply couldn't cough it up himself. 😲
Thankfully, he’s breathing normally today, the pain has subsided, and he seems to be finally coming back to his senses.

Thank God. Things are finally looking up. Is anyone actually eating?

Angela Wright said:Thank God. Now things are finally looking up. Is he eating okay?

Oh, he’s eating and drinking just fine; everything seems to be back to normal there.

Zachary Howard2, glad I heard things are looking up. It's honestly insane that you guys had to basically coach the doctors on how to do their jobs. When someone's sick, they shouldn't be left hanging like that. Now, let's just hope he pulls through.🙂

Linda Patel21 said:Zachary Howard2, I’m glad things are looking up. It’s honestly wild that you had to step in and basically tell the doctors how to do their jobs. When someone is sick, they’re completely at the mercy of the system. At this point, the only thing that matters is getting him back on his feet.🙂

That’s just your luck, Zachary Howard2—you’ve clearly spent enough time dealing with hospital staff and their nonsense to know how to navigate it... Ugh, just thinking about it gives me chills. I remember being patronized with that condescending "honey" and "sweetie" routine at the hospital when I called out the head nurse. She’d ignored the doctor's orders and tried to give my mom the wrong dose and concentration of Mannitol in her IV. She actually had the nerve to ask what my medical specialty was. You should have seen the look on her face when I told her I specialize in costume design over at TTF.😁

Angela Wright, you're preaching the truth here. Even through my own medical issues, I ended up learning things about the system I never should've had to deal with, but honestly, that knowledge is the only thing that kept me sane while I was stuck in the hospital. My biggest regret is that I couldn't do more for my dad—he was battling pancreatic cancer with metastases. To this day, I still struggle with the feeling that I missed something, even though everyone keeps telling me we did everything possible. I miss him so much. I just hope that one day I can find peace with it, the same way you found peace after losing your mom.😢

Linda Patel21 said:Angela Wright, you’re absolutely right about everything. Even through my own medical struggles, I ended up learning things I never should have had to deal with, but honestly, that knowledge was the only thing that kept me sane while I was stuck in the hospital. My biggest regret, though, is feeling like I couldn't do more for my dad when he was fighting gallbladder cancer with metastases. Even now, I still struggle with this nagging feeling that I missed something, despite everyone around me insisting we did everything humanly possible. I miss him so much. I just hope that, eventually, I can find the same kind of peace you found after losing your mom.😢

I had already made my peace with losing my mother while she was still breathing. It wasn't some sudden shock; it was more like watching a light slowly dimming, one flicker at a time, until there was nothing left but the physical shell. I watched her fade piece by piece. Honestly, I found myself praying to God to just take her—to end the struggle and spare everyone the agony of watching her suffer.
What I just can't wrap my head around is that she was handed such a hopeless diagnosis right from the start. It wasn't like there was any real fighting chance to begin with. For someone with a spirit as restless and vibrant as hers, that illness was nothing short of degrading—it stripped away every ounce of human dignity. Honestly, even now, that’s the part that still eats at me.
We’re definitely missing something vital. I was watching the Vine yesterday, and there’s this scene where the actor playing Guberina talks about his late daughter, Luke. He says she was the salt—the essential seasoning of his life—and that none of the good things that have happened since feel quite right without her. She should have been here to experience it all. She earned that right. 😢