Tag Archives: kidney

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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More Meds!

25 Jun

So the doctor upped my pain meds, which he was kind of reluctant to do at first because of my O2 sats going down and my liver enzymes being so elevated. That and the obvious kidney issues, he was worried about such a high dosage, but he did it, and it’s helping. I’ve been even more tired, though, because of it. I’ve been sleeping like crazy and still feeling exhausted. Like I can barely keep my eyes open, but it’s better than all that pain. I’m still feeling rather uncomfortable, but still…better.

Hospital Trip

8 Jun

Mmk folks, so I noticed there was blood in my urine yesterday, so I went to the doctor. He took a urine sample and sent me to the hospital, where they wanted another urine sample. Now, I only pee like once a day…my doctor got about all I was gonna give for the day. Soo they gave me some fluids, but didn’t want to give me a lot so as to avoid the edema problem I’ve been having and pleural effusion problem that I’d had before. Eventually I was able to go a little. Enough for a sample. They found blood (DUH!!) and proteins…more than last time, and told me my kidney function is getting worse. They were talking about dialysis, but they want to try raising the dose of diuretics, and putting me on another blood pressure medication as well as arterial embolization for the tumor partially occluding my renal artery. So if that works, I won’t need dialysis! I’m hoping and praying that this works, because I really really really don’t want dialysis. Really! My parents are coming tomorrow to see me, and they’re going to stay for about a week, I believe. I still have some articles to read for my research, so I guess this will give me a chance to do that.

Presentation? Check!

15 May

I finished my community health oral presentation, it was excellent! Now back to the hospital where I will attempt to finish studying for my exams that I have tomorrow and Friday. =/ Apparently my kidney function continues to get worse, so I’ll be doing my studying in a hospital bed. 😦

On the bright side, I’m that much closer to being done with my first year of med school! 🙂

Rambles

30 Apr

My tire blew today right before my doctor’s appointments…all my tires were pretty much bald unbeknownst to me. Ugh. My oil needed changing a few thousand miles ago. My car is fixed (easy)…I have AAA, but my body is not. I wish I had AAA roadside assistance for that. Hey, I blew a kidney…Ok be there in 45 minutes, they show up in an hour, here’s your new kidney! And they don’t ask you for money cuz you’re a member. But…life has to go and be hard, so that doesn’t exist. Plus now, I’m on a higher dose of depression meds and an additional depression medication, and I’m still depressed. Go frickin figure. My oral chemo dose went up cuz the ish is just spreading like wildfire, and it really feels like there’s nothing I can do about it. So what did I do? I cried in the mall while I got all my tires changed and my oil changed. Good plan, go me. Now people think I’m crazy. Heck, I feel crazy. Once again, I’m not supposed to be alone tonight. I missed school today. That lecture looked like a beast, too. Ramble complete for now.

Chemobrain and…

19 Jan

Apparently my last whole kidney is having problems…I reeeeally don’t wanna end up on dialysis, so I hope this medicine works. And…stereotactic radiotherapy for the lung mets soon. Scheduling a colonoscopy soon as well. Sounds like great fun! -__-

And about my mom crying over winter break…

My mom is the kind of person that feels like she has to be strong for everyone and fight hard for everything, so seeing her cry was…just weird honestly. She has her best friend to talk to…her best friend lives here closer to me and helps take care of me since I’m farther from home. She doesn’t tell my dad things she’s scared about, because she doesn’t want him to be scared. He takes those cues from her, and once she said that, I realized that’s what she’s been doing with me, and why she was crazy enough to let me be so far away from home during all of this…to give off a “no big deal” vibe, I think. She tends to do that so that no one else panics, since she’s the one with all the medical knowledge in the family.

This seems a little scatterbrained…probably because it is. Probably because I am, so I’ll leave it. And there’s nothing anyone can do about it. My blog, my rules. There. *Tee hee*

I Think I Ate a Desert

16 Jan

I have been so intensely thirsty recently! So much so that I wake up in the middle of the night and have trouble breathing because it’s hard to get my mouth open to properly, my tongue is all swollen, and my mouth just hurts! It’s bleeding some, too, which is no fun, obviously. Or…maybe I’m not exactly thirsty, per se, but my mouth is so dry!! Drinking water doesn’t help…the water just feels…dry. Water is like…the definition of wet, but somehow, when it’s in my mouth it feels dry. Like I may as well be consuming sand. I just wish I could remove my mouth and put it back on when it decides to act right. I wish that with a lot of body parts, really. You’d think with the extra water that I’d pee more, but…TMI alert btw…ok um…I can’t really pee! Every once in a while, yeah, but generally speaking, I can’t pee. Either I have trouble starting, keeping it going, getting it all out…or just can’t go in general, but it’s no bueno because I’ve been drinking more water because of the excessively dry mouth! The weird thing is…I really don’t have to go, I just feel like I should. Kidney issues, much? Ugh.

Headed in the Right Direction

27 Dec

Since we couldn’t get the answers we wanted from the doctors we visited, my mom called a doctor up at Memorial Sloan-Kettering in NYC. This guy basically wrote the book on head and neck cancers. He said that they have divided up his department, and he now only does thyroid cancers, but he advised us to take my dad to Moffitt. She decided it’d be convenient to take us both there. Since Moffitt is an NCI, I think they had an easier time communicating with my doctors back in Georgia, who also are part of an NCI. They had all of our scans pulled up on the computer already when we came in and everything.

So, yesterday we went to Moffitt, and my dad saw the head and neck surgeon who does these specific types of surgeries in his sleep. He only does this, and that’s it. From the MRI that my dad had, we know that the tumor left behind is actually 2.8 cm, not 1.5. This adds up to about 4.3 cm. This technically puts him at a stage T3. The surgeon scoped him and confirmed this. He also said that it invades the base of his tongue, and it’s right in front of his epiglottis. It’s not another tumor, it’s an extension of the original tumor. They think he has some microscopic disease going on in the lymph nodes, as the ones on the left side are slightly enlarged. He said he definitely would not suggest further re-excision or any more surgery, as this would cause permanent dysfunction to his speech and/or swallowing, and he would still have to get chemotherapy and radiation. Why do it if chemo and radiation could achieve the same results without the surgery? So, what he said was the protocol that they use is 7 weeks of radiation, with 5-FU and cisplatin on days 1, 22, and 43 of radiation simultaneously. They also do the PET scan while doing the radiation simulation to get better targeting. There was also a study being conducted by a radiation oncologist there comparing 2 cycles of this chemo to weekly chemo treatment with Erbitux all while doing the radiation. This trial is being done in HPV positive patients, and my dad is one of them, so it’s possible that he could qualify.

After meeting with him, the radiation oncologist was there, and said that he could meet with my dad. He wasn’t even supposed to be in that day, and they had no appointment with him, so this was very convenient. Now this guy has about 25 years of experience with specifically head and neck cancers, and a lot of experience with HPV positive tonsillar cancers, as he is conducting research on it. He said almost the same thing, but his treatment plan was a bit different. He suggested 6 weeks of radiation, with one day a week being doubled-up, as in radiation in the morning and the afternoon. He’s going to bring my dad’s case before the tumor board on Tuesday to see if he qualifies for the trial, as the tumor may be too large, there may be too much lymph node activity, and he also wants to see if he even needs chemotherapy. If he does, it would be cisplatin alone 3 times throughout the radiation. He’s going to have radiation simulation with the CT scan today and with the PET scan next week. He’ll have to have a dental appointment to make sure his teeth are ready to handle this radiation nonsense, and then he should be able to start about 2 to 3 weeks after that.

I met with a medical oncologist who does a few different kinds of metastatic cancers. He said that he would have done 2 more days of radiation for the bone mets. He thinks that would have been more effective in managing my pain. He also said that he would have chosen a different order, basically, for the medicines that I have been put on for the control of the tumor growth. He’s pleased that I’m on the Axitinib (Inlyta) now. He said that he would have taken out the whole right kidney, but it’s too late for that now. He does, however, want to consider trying Zanosar, but he’ll have to take this to his tumor board, which meets next Thursday (not the one today). It was a little discouraging listening to all the things he would have done differently, but that it’s too late to change. It makes me think that things could be a whole lot different right now had I gone to them in the first place or had I started out at an NCI at the very beginning of my treatment. It just seemed like a lot of coulda, woulda, shoulda during my appointment, but he said that he’s hopeful that the treatment I’m on now should give me the best chance for basically living as long as possible. He also gave me some tips for gaining back some of the weight I’ve lost, so I’m going to try those. He confirmed that what we’re doing now isn’t exactly standard, but it’s what he would try at this point. But he doesn’t like that my symptoms aren’t well controlled, so he’ll work with me to adjust the dosages in order to get them under control. Especially with the breakthrough pain and the nausea.

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.