Tag Archives: PEG tube

Stupid Cancer!

28 Aug

The other day I passed out in the shower and got a concussion. That’s just what I needed in addition to the shingles and bleeding and…well…cancer. A concussion. It’s like the little cherry on top! It’s actually more like a ‘kick me when I’m down’ kind of moment. But I like the cherry on top idea better. It works, too, because I don’t like those little red cherries. Anyways, I’m back at school, so it’s ok, I’m ok. I just have a massive headache and it’s kinda hard to concentrate, but we’re learning about cancer in class right now, so it’s not like that’s something I have no idea about. Ugh. I’m like the class ‘resident cancer expert’ so everyone is asking me for help with the carcinogenesis and neoplasms chapters. At least this cancer is useful for something.

I’m not producing enough of my own red blood cells, so I’m getting pretty anemic. It’s a problem with both myelosuppression and lack of EPO because of decreased kidney function. That’s most likely why I passed out. I threw up basically all day yesterday, so I didn’t even try to eat or even use the PEG tube. Or as Randi so affectionately called hers, “Peggy.” I am having a cup of tea right now, but I can tell that it’s not going to stay down. I’m already getting those waves of heat all over with the chills and cold sweats that I usually get when I’m going to throw up. My apartment is kind of a mess. I haven’t been putting my clothes away when I take them off..just haven’t really had the energy to do it, so there are clothes scattered about, and my parents are going to come visit me and my mom will NOT appreciate the condition my apartment is in. She’s the kind of person that before she comes over, I need to vacuum, dust, polish, and scrub everything or she’ll have to make some kind of comment. But then she usually winds up cleaning it. My clean and her clean are two completely different things. I don’t think I could ever clean up to her standards. I don’t know what she sees when she looks at things. But I don’t have the energy for all of that. I’ll just pick up my clothes and call it a day, and she’ll complain, and I’ll be like, ‘I was too tired’ and she’ll understand and clean for me. >_<

There’s this guy at school that likes me. He’s a first year, but he’s a year older than me. He wants to take me to dinner sometime. I haven’t told him that eating isn’t really a thing that’s high on my list, but…I suggested something else like the aquarium. I have a year pass, so i might as well use it as many times as I can before the year ends. Or maybe the art museum would be cool. I don’t know what he’s into, but I think he’d like just going anywhere with me. He’s lived in this city for years now, and I’ve lived here for a year. I haven’t gotten out much to explore the city, so he wants to take me to a few places to see some random things around here. Sounds cool to me. Oh, and he’s from Sudan and he has family there and in Egypt. It’s pretty cool. He also speaks 3 languages: Arabic, English, and some nubian language that I forgot the name of. English was his 3rd language, he learned it when he was about 12. It just feels nice to have some human connection and interaction like that in person again. I miss that. 🙂 He doesn’t know about all the health stuff and I don’t really wanna tell him and run him off, but it was kinda obvious I guess, and he didn’t seem to mind, but he doesn’t know any details or anything. Gah! Stupid cancer.

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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!

Rambling On…

28 Dec

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They’ve actually decided not to have my dad treated at Moffitt, but he’s going to basically use the protocol suggested there, and be treated closer to home. We need all the prayer we can get right now. For one, all of this is really confusing with different doctors suggesting different things, and then it’s also really stressful and scary. I’m just trying to hold it together. It’s really hard to tell my parents exactly how much everything hurts or how scared I am, I don’t want to make them sad or nervous or anything, when at the same time I know that they want to know. And then I feel like my parents are always somewhere else in their heads…and rightfully so, but it’s hard to talk to them sometimes and feel like I’m getting their full attention. This whole thing just seems very isolating, because my little brother has been avoiding everyone a bit, and people are just kind of frustrating me for one reason or another. I don’t really know if it’s me or them to be honest. It could be me. I could very well just be irritable. I can’t really tell. Either way…my CT scans came back, and it showed more growth since the last scan, so the Votrient wasn’t quite doing the trick, so hopefully the Inlyta and Zanosar work, and my weight dipped down into the double digits during this last hospital stay, so I have to try to get it back up quickly…somehow…without consuming too many carbs or too much glucose in general since tumors feed off of that. Mission Impossible! Glucerna straight into my PEG tube, maybe?

Hospitalized for Christmas, But it’s Okay.

25 Dec
The nurses gave me some hats (stereotypical cancer patient gift), and they also did a little parade, it was cute! My dad had my cat call me on the phone, and he meowed lol. That was cute, as well. My mom brought me some juice she made, and it was really good! For Christmas, I also got a watch, more hats, and some sweaters, and I got my IV pole decorated like a Christmas tree haha…
My dad and I are going to watch a DVD later. I kind of want to watch The Sound of Music. I feel like singing.
Since I have the PEG tube now, I can just use that and pretend I’m eating whatever I want…like unicorn! …that was probably the fentanyl speaking, but whatever, it’s Christmas. Hugs 🙂
Merry Christmas, everyone!

We Just Want Answers!

19 Dec

So, here’s the situation. My dad’s pathology report showed a 1.5 cm tumor on the left tonsil. That was removed. Great. Then, he saw an ENT that scoped him through the nose, and did an MRI with and without contrast last Sunday, and said that there’s another tumor (or piece of tumor) still in there that’s about 2.8 cm. The cancer that is still in there is also invading the base of his tongue. This all adds up to 4.3 cm. That being said, that means that he’s probably a stage III, not the stage I or II we originally thought.

Not the news we wanted, however, this is a treatable cancer, and there’s still hope. There’s always hope. Sometimes hope is all there is..

SOOO, this same ENT wanted to do a radical neck dissection surgery to remove lymph nodes from the left side, along with the remaining tumor, and she wanted to get “clear margins of about 5-6 mm.” If she couldn’t do that, she would still remove the tumor, but the surgery would be less extensive. If she got the margins she wanted, she said she wouldn’t see the need for him to have chemotherapy or radiation. This sounds good, because chemotherapy and radiation suck, but we would probably want him to at least do radiation anyways. However, if she couldn’t get the margins she wanted, he would definitely need radiation, and possibly need chemotherapy (They usually use carboplatin, cisplatin, 5-FU, paclitaxel, docetaxel, cetuximab, and/or something of the like for this type). They put in a PEG tube early, as the treatment can cause mucositis, which would render him unable to eat.

My mom called some radiation specialists at UF’s Shand’s Hospital, and they said that the protocol for this type of cancer is not the neck dissection surgery, it is radiation alone. Radiation alone has the same cure rate as the neck dissection surgery, and is less invasive. The type of radiation used here is the usual external beam IMRT type of radiation, and not proton therapy. He would probably get somewhere between 50 and 70 Gys, 1.8-2 Gys a day, 5 days a week, for about 7 weeks. My mom was hoping for the possibility of proton therapy (they currently tend to use electrons) because there’s a reduced risk for secondary malignancies as a long-term side effect from the treatment.

This being said, we’re all a little confused as to what to do next, and we just want some answers. Three different doctors have said 3 different things, and it’s a bit overwhelming. Right now, my dad is doing okay. He just tires very easily and is sleeping a lot. His MRIs so far haven’t shown nodes, but they have shown a tumor in his brain. It’s unknown whether it’s an incidental finding or whether it’s related to the tonsillar squamous cell carcinoma. It appears to be benign, as it hasn’t grown between the 2 times they did MRIs with and without contrast on his brain. He still hasn’t gotten his PET scan, because the inflammation from his surgery could show a false positive, so he’ll be getting that in a few weeks.

Once we figure out all of this madness, he should be starting a treatment plan in earnest…obviously. I just hope that happens soon!

My surgery was yesterday morning, so my mom has been here with me. It ran longer than expected due to some complications, and I’m in a surprising amount of pain. I didn’t expect to be in this much pain, honestly. My vitals, liver enzymes, blood calcium, kidney function tests, and CBC results are ALL really crappy, too.

My mom hasn’t been sleeping recently, so I asked if she was okay, and to really be honest with me. She, understandably, feels the need to hold it together for all of us, but that leaves her holding everything inside. So, I told her to just be honest and let it all out. She started to cry and told me she was distressed, so we just held each other for a while and had a crying session. She wants me and my dad to be with her forever. She’s also scared because my brother wants to go into the Marines and then become a police officer. She’s legitimately afraid that she will outlive all of us. This thought has occurred to me before, but I’ve tried not to let it linger. It just shook me when she actually expressed it. I asked if she had anyone to talk to that she could just be honest with, someone that could listen to her and she didn’t have to pretend that she was always okay, and she said that she did. I know she wouldn’t be this open with me on a regular basis, so I had to make sure she had someone to cry with if she needed to. I’m getting her a gift certificate for a massage for Christmas, don’t tell! We’re a mess.

I’m Home, Why Don’t I Feel Happy?

17 Dec

My dad and I are both getting PEG tubes tomorrow. Earlier, I kinda thought I was watching TV, but it took me 20 minutes to realize that I forgot to turn it on, and I was really just thinking while staring at the TV. I don’t really want to watch anything on television anyways. It’s all either stupid stuff, sad stuff, or infomercials. Merry Christmas, yay.

Update

11 Dec

My dad had a PET scan this morning, and he has an appointment with a hem/onc and a rad onc this afternoon. We’ll finally know more…stuff about…things, as in what his treatment situation will be like, and whether or not they got everything out during the surgery. I hope so! My mom will fill me in later today.

I have been so nauseous all week. I’m actually having trouble swallowing food, and then once I swallow it, it seems like it just sits in my chest. Not cool! I don’t want to have the NG tube anymore, but that means I’ll probably have to get the PEG tube again, which I don’t want either. I guess it’s one or the other, though. At least I can stop worrying about weight gain that’s usually associated with school…that’s one way to look at it, I suppose. And…if I get a PEG tube, I can get healthy gross things and not taste it! Ok, I guess it doesn’t have to be so bad…I think…or something. Whatever. I’ve also been having a harder time keeping my pain under control…the past couple days have been pretty intense, but we’ve decided that I’m going to get radiation for the bone mets, and that should help a lot. I hope it does!

In other news, I get to see my family in a few days, yay! I also get to see some of my college friends starting Thursday, woo hoo! 🙂