Tag Archives: nutrition

Getting Harder

30 Oct

Something that I’ve noticed is that it’s getting harder for me to breathe while I lie down. I have to be propped up if I want to breathe well, and it seems like I have to be propped up increasingly more as time has gone on. I don’t know how bad this is going to get, and I haven’t fully addressed it with my doctor yet, because I really just don’t want anything invasive anymore or to be stuck in a hospital again. But I am kind of scared because it’s getting to the point that it’s just harder to breathe in general even with my oxygen, so now I definitely have to fully explain it to my doctor as it’s not only uncomfortable, but it’s frightening. It’s also hard to get decent rest while sitting up, though I have been sleeping pretty much ALL the time.

My pain has been well controlled, and I’m pleased with that. The pain medicines might be causing a bit of my nausea and lightheadedness, but it’s better than the pain. I haven’t really been keeping up like I should with my nutrition and staying hydrated, but I’ll make more of an effort. I’m trying really hard to get used to these Depends, but it’s hard and embarrassing to have to adjust to something like this. I haven’t been making many updates because I haven’t really felt up to it, but I will still try to keep updating.

My mom is going to take some time off of work soon and we’re going to do Christmas a bit early this year. That should be fun. I love Christmas. It’s my favourite.

First Day of School

12 Aug

So my first day back went pretty well. It was just orientation, so nothing difficult. It was SO tiring, though. I could sleep a thousand sleeps right now. Imagine when the lectures actually start…as in tomorrow! I have a fever and a headache, though. We got the lecture packets for the next 2 days for if we wanted to be gunners and pre-read. So…pew pew! I registered again with the office of student disabilities. I got my home health aide back, because I’ll need her in the evenings and on weekends because I’ll be tired and because of chemo and stuff. It’s kinda kicking my butt a little. It’s rougher than I thought it would be. I still haven’t figured out a way to get nutrition either. I got a waiver for my Hep B shot, since I can’t have shots like that right now. I called the company that mails me some of my medications, and apparently, my doctor never sent in one of my scripts yet, so I’ll have to call her tomorrow. It’s storming really hard right now. It stormed hard while we were in class, too, and knocked the power out for a second. I’m a little nervous about this school year. Looking at the packets and the books, it’s going to be really hard. They said so, too. I don’t know if I can really do this or if I was just kidding myself. I mean I know I could if I was healthy, but…I’m not. I’ll try my best, though. I’m in too deep to quit now!

Home Health Aide

10 Jul

I met my home health aide today. She’s going to come twice a week for now. She’ll do things like vitals and blood draws, helping me with personal hygiene stuff, maintaining my mobility and independence as much as possible with some exercises and stuff, pain management (super important), medication management, taking me to appointments, helping with food/nutritional needs, changing my bed sheets if I need her to…that one was a surprise, and keeping up with my medical record stuff so she can keep in contact with my onc. She seems really nice and I feel like I’ll enjoy spending time with her. Through the same program, they’re also offering me some other services like pastoral services, a physical therapist, their own social worker and patient advocate, a counselor, which I’ve been in need of even though I was turned off from the idea. I hope the counselor is good and that I click with them. I also hope they don’t try to give me any diagnosis of a problem that I don’t have like the last one who said she thought I had OCD. I swear I don’t…having some perfectionist tendencies does not make me have OCD. They offer some other stuff, too, but it was a lot to take in at once. Some other stuff is like bereavement and blah blah blah, but…yeah. I think I’ll benefit a lot from this extra help. It should hopefully keep me out of the hospital so often, goodness gracious! Ugh. And I think it will give my family some peace of mind knowing that there’s someone here to specifically help me.

Hospice?

5 Jul

I have some good news. Once I talk with the nutritionist, I’m getting discharged! My heart is looking good, and since I went yesterday, and my O2 sats are up, and I took a couple of laps around the unit, they’re gonna let me go! That’s really good, that’s great, but before that, I have a meeting with my social worker, Mags, and my patient navigator to talk about the benefits of Hospice. I talked with my onc already about the possibility of stopping treatment, but it’s something I’m going to have to think about for a while. I feel like Hospice would be super beneficial, but I can also think of some people who may be kind of upset if I choose to do that. Luckily, it’s not like I’m being pressured into making any kind of decision. I can think about it for as long as I want. It’s gonna take a lot of thinking and serious conversations, so I’m gonna talk to my parents about it in person when I go home. Also, Hospice has more than just a facility that you can go to, they have home health nurses and lots of other things that I’m gonna learn about today, so there’s that.

Major Rambling Alert

5 Feb
Having another down day today. I talked to the counselor here, and…I’m pretty sure I felt worse afterwards. It wasn’t anything she said, but I just kind of thought she would help more or…it just made me think of all the things I’m depressed about at once, I guess. All I know is that after the appointment, I couldn’t stop crying…and I didn’t expect for it to be like that.
I tried reaching out to a classmate of mine, but he said that since he has to wake up early tomorrow he can’t talk…and it was like…6 PM. I mean, I’m sure he’s busy or whatever, but I don’t think that was the problem. I think he was just…uncomfortable maybe? I don’t know. I just…he said I could call him whenever I need to talk, so I did…and yeah, I guess I can’t actually call him whenever. So……..that made me feel even worse, and then I fell asleep for a little.
I’ve been so tired recently. I pretty much slept all day, and still could hardly force myself to wake up for the appointment today. I usually have trouble sleeping, but now it’s harder to stay awake. I’ve had a lot of pain today, too. And uh…had a bit of an “accident” which was super embarrassing. I have some nerve damage from the bowel resection surgery I got, and so…yeah, that happens sometimes.
I can’t eat any food right now, so it’s all IV nutrition. I’m ok with this, because eating is just complicated now, but I’m sure this won’t help with the weight issue…but I guess that’s the least of my worries today. But…I am kind of craving a “cutie” now…you know those little oranges that are super easy to peel and they’re small and adorable?
Yeah, that.

Psychedelic Rainbow Turbo Squid Party in my Head

28 Jan

Apparently, I lost 5 lbs this weekend. My hem/onc was not pleased about it because the whole point of using the PEG tube was to gain weight…but if I know my body, it’s going to do exactly the opposite of what it’s supposed to. Maybe he should have put me on a diet…some reverse psychology could have worked? I dunno, just a thought. But if I know about it, is it really reverse psychology?

Anyways…I’m apparently on too much Dilaudid and IV Benadryl to have coherent thoughts right now? It’s like a psychedelic rainbow turbo squid party in my head. At least that means that I’ll be able to sleep tonight! That’s good, because my stomach is killing me!! Ugh. My lung nodules apparently like…grew or whatever. I was hoping for only good news since I started this new med for the mRCC in December. Some good news, though, is that I have been able to pee! Ok, maybe I didn’t need to share that? Ah, what the heck!

Anyways what was I saying…so I could have lost 5 lbs from having a fever and stuff and my body needed extra “juice” to keep it chugging. I’m supposed to keep eating with my mouth, too…you know, so I can still swallow and stuff later, but…I don’t wanna! It hurts and it’s just exhausting. Plus, I’m really not hungry. Pretty sure I don’t do enough in a day to work up an appetite. Well…except for when Prednisone is involved. Then, it makes me wanna eat anything ever.

They had me talk to the nutritionist, and she didn’t tell me anything I didn’t already know, but she’s nice, so…you know, whatever and stuff. Plus, now I have to eat on a neutropenic diet type thing until my counts come back up. Chemo kinda obliterated them. Makes it hard to actually know what to eat and what not to eat, so then I just get frustrated and say forget the whole thing and just do the PEG tube stuff. And I’m supposed to like…not have a lot of sugary things, I think cuz tumors like glucose, but not too much protein or anything acidic really, cuz my kidney is in the process of failing, and no fresh fruits or veggies because of my blood counts, but they said cooked veggies generally don’t have enough calories, and when you cook them, you lose a lot of the nutritional value…I feel like instead of telling me what NOT to eat, they should tell me what TO eat. I’m also having some irritation in my mouth and GI tract that just makes anything involving food kinda miserable, and once I get past the “eating” part of it…well don’t even get me started on what happens after that. No one wants to know. I don’t really know where I was going with this, so I guess I should stop before I divulge too much information lol. Kthxbai!