Tag Archives: CBC

All Buttered Up

22 Feb

I was in an oddly cheery sunshine-y mood yesterday, so I couldn’t help but to think…WHAT HORROR IS ABOUT TO BEFALL ME?! Until I remembered…that was my usual mood before everything got all jacked up…if my memory serves me correctly…which it no longer does… -__-

Well…today I realized that I was not totally wrong in thinking that I was just being buttered up for something. Today SUCKED! I mean my blood counts are coming up (that’s what the random bruises were from…low counts), and the fever is coming down slowly, but that was from the help of Neulasta…so that means bone and muscle pain and feeling just pretty much awful! Buuuut it also means I don’t have chemo tomorrow, so ha! I always feel kind of excited about not having chemo…but then I also feel nervous, too. Like in the meantime I’m just letting the cancer spread or something. But in the amount of time that I’m off of it…I don’t think that’s really an issue, it’s just me being kinda paranoid about it, I guess. I was also still really nauseated today. That sucks because the nausea seemed like it was starting to go away and then BAM! It was back…rude. *Le sigh*

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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!

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.