u/FUCancer_2008

I've had to get up for 1 reason ot another all week & tomorrow I don't have anything so I can sleep all, it's the little things you know. No kids home no appointments. Some days it's the little things like knowing I can loaf all day tomorrow

Update: got a slow morning but out of pain meds(restocked now), so my hip pain put a stop to the sleep by 8 still pretty late. And tomorrow I can sleep in or all day if I want again but Friday I pay with a10AM appointment, I usually try to schedule after noon only but this was made for me with my latest hospital discharge. I don't like waking up before 8since I usually sleep in 2 blocks8-4/5 then until 8 to get 7+ hours of sleep. Then I move like a snail between pain - negative energy levels. At least I sleep now. There was almost a yearafter my stroke where that wouldn't happen no matter what I tried, gotten on a better track there. It was torture to not sleep for that period. Now it's pain that cuts sleep short which luckily some oxy helps greatly.

I just had a almost throw up situation of my own creation, I didn't put food in my stomach before pills, I was running late for my morning meds so I was just swallowing them down and then the bigger horse pills were all that was left, the gagging on them started me retching, never actually threw up just came right to the edge without the relief it brings. Why is it so traumatic? Throwing up is never pleasant but there is something special about dry heaving that takes me like an hour to get past. My daughter wasnt phased at all. Used my moment of weakness to ask to do a craft with clay. I guess I'm glad this isn't affecting my kids at all but also dude, kid this is not the moment.

Not sure what I'm looking for here, reassurance, people who get it. I'm in a bad way last 3 weeks has seen 2 hospital admissions and generally a down turn in my health. The 2 hospital stays, were bc I wasn't breathing. The first they said pneumonia- got pumped full of antibiotics and felt loads better after a few days on supplemental oxygen. Then discharged and a few days later right back in the same spot, now it's not pneumonia the consensus is congestive heart failure. They put me on dieuretics to drain fluid in my lung sothere is less pressure on my heart, they also see what looks like a big thrombosis attached to one of the valves, ok increasing my anti lot meds and do a brain MRI as a precaution that there are no leaks or anythingthat uppin the gdrugs could make serious. MRI results back, great no leaks or any reason to hold on treatment. So I'm on a heptin drip24/7. No big, whatever.noh shit incidental MRI finds 3 very small but totally new brain mets- no symptoms and still small, largest is9mmto 2mm. Prelim radiologist talk gamma knife might not be recommended over something like whole brain radiation, well that seems like a huge escalation in scariness.

MOs concussion is there is just too much damn cancer, which I'm not arguing with id love for there to be less cancer.suposed to be starting xeloda as soon as I can get it, it's in specialty pharmacy insurance hell right now my Dr office is working to get it through and they generally do a good job at it. It takes awhile though

So within the last 1minrhs I gone from being independent, getting myself around the house doing some basic human stuff like showering etc, being able to be fully present at dinner/evenings for family timeto having supplemental oxygen on all the time, barely being able to get up and dressed in the morning, I been having increasing rr hip pain that we haven't found a good solution for except oxycodone which I have to take a bit of to knock the pain out but then I'm pretty loopy and want to sleep, most of the time.

Anyway so here I am with all the bright shiny new diagnosis or issues,:weak as a kitten, doped up & un focused, congestive heart failure that is well controlled for now at least until I become slightly less dehydrated and it's ba ck.again. I'm trying to take it one day at a time. Today was the first in awhile Iamaged to get up& dressed so small improvement there.

Cancer is continuing to grow and now spread to scary areas, something it hasn't done even if I was flying through lines of treatment, this new development is probably the biggest thing right now. Trying to get to a more zen place of make it until you're on xeloda for a few weeks then see what things look like, I'd be excited to get back to taking care of myself and maybe putzing around my garden a bit a.nd being able to be present for family time& my kids.it kind of feels like I'm waiting for a hail Mary with the xeloda. And if that's not the case my options are limited and it might be time for hospice, which my husband doesn't want to talk about at all. Like if he plugs his ears& la las or will dissapear and not be a problem anymore. So I'm focusing on getting affairs in order & finally getting our trust finished and official so I know my kids are protected at least monitarily wise. Trying to figure out what if anythingmore I can do for them that would be meaningful, birthday card for milestones or letters for big life milestones. It all seems a bit daunting so mostly I nap.

How does someone go about making the hospice decision, I'm thinking if there is no hope of anything really changing for the better it's probably time for me, my state also has a MAID law which strangely gives me a lot of comfort. I won't have to sit around as a doped up lump of flesh waiting to die.

Sorry for the rambling it's rattling around in my head & I needed it out. I'm tired of having to pee every 10 minutes, maybe hospice has a way for me to pee without having to get up to go, it's tiring.

Happy mother's day to me.

Ended up in the ER last week with pneumonia. Id just gotten into a good groove with PT and OT while also navigating progression of my cancer& this will be my 8th line of treatment for that- not great to have gone through that many lines. BC of the pneumonia ended up puking in the bathroom at my daughter's 4th birthday party. I was so weak I couldn't really participate. My reward for struggling and keeping going is more shit. I'll get up & keep going but at this point I don't know how much longer I can keep doing this. Thanks for reading my rant.

I POSTED HERE LAST WEEK BUT I got pneumonia ended up in the ER then spent my daughter's 4th birthday puking. It royally sucked. My dad & his 3rd wife who I find obnoxious are visiting which makes everything worse. There's this game set my 7 yo loves called Set. She made up a new rule that he has to count to 5 before calling a Set( point in the game). BC she was loosing, she has some deep-seated confidence issues and has to be right or have attention all the time. She's lied to me a few times so far& my dad once blatantly in front of my husband to my dad. She so rediculous & annoying. Only 2 more days tho& they are never getting invited back.im pretty bummed bc my husband & I were supposed to go to a nice hotel/ spa for a couple nights while they were here which is the only thing redeeming about their visit& now bc of the pneumonia and that I can barely see tand up we nixed that. At least the kids like them. Then today I had to schedule scans & that's always a horror show. They only have availability at but crack of dawn times and this go around the only appointment was during a meeting my husband has to be at. I managed to find a friend that can go with me, normally I'm ok going alone but bc I'm so weak I don't feel comfortable doing that this time. The awful times are bc my Dr wants scans every 3 months & my insurance won't authorize until it's been 3 months so I'm always booking and trying to get in within 2 weeks, it's such a stupid dancethat I have to deal with& having my husband there on scan days is so much better, it's all just so stupid, I'm too tired for all this shit.

Id really just like a break of any kind. ID JUSY GOTTEN BACK INTO A GROOVE & MAKING PROGRESS FOR MY PT& OTagain after the last issue- seizures and on set of epilepsy mid December- from my strokealmost 3 yrs ago due to my first line of treatment+ the cancer Now pneumonia. Like can I get 6 months to recover a bit. I get to a decent place & then end up in the ER with some new horrible thing to deal with. ikeep getting back up & going but I don't know how much longer or many times I can keep doing this. It feels like anytime I get anything remotely good going in my 🧬 Fe it has to get demolished like I'm not allowed to enjoy my life ever again. I'll keep going & getting back up but there's a limit to how much I can take. I'm on anti depressants & have tried 4 different therapist that all immediately did the 1 thing I asked them not to, trouble shoot my disability from my stroke- I do that all the time & needed a space away from that. We don't have a ton of help so I let my dad & his wife visit& they are so much more stress than help.

Anyway thanks for reading I'm having a bad day & needed to vent.

I'm at my daughter's 4th birthday party and hiding in the bathroom puking. This is fucking awful

Well looks like I have progression 7th line?. I've lost track.

Talk about a new plan Friday.

Anyone find luck after this many lines? I HAD 1 YEAR ON TRQAP AND EVERYTHING ELSE IVE BEEN BLOWING THROUGH. ALL THE ENDOCRINE THERAPIES, CDL 4/6IMHIBITOR. NOR Orserdu, I have the esr1m mutation

I'm breathing pretty rough& pretty rough and yeah my SO2 was 84, on oxygen it's back to high 90s

AND. IM GETTING ADMITTED OVERNIGHT SO THEY CAN PUMP A COUPLE ANTIOTICS INTO ME, IT WAS PNEUMONIA WIRH MAYBE A COUPLE SMALL PULMONARY EMBOLISMS

Update I'm free. Going home with antibiotics, and oxygen

I've had a lot of naseaubit no actual puking until just now. I went long enough that zi forgot how very awful that is. The acid is really irritating my throat now. 🤢