Still Nothing

Still no word about my dad’s PET scan. His appointment is on Thursday. I guess we’ll find out then unless my mom calls tomorrow. I think she wants to know, but doesn’t really want to know because she’s scared. She can’t go to his appointment with him either because she has work, and she knows what questions to ask. My dad usually doesn’t ask many questions, so that’s making her nervous, too. I’m sure she’ll call his doctor after his appointment, though.

Medicated Stream of Consciousness

I talked to my social worker and some other people, we looked at the advanced directives stuff and power of attorney stuff again to see if I wanted to update anything. I feel like that’s a bad sign, is that a bad sign? I keep getting these bad signs, and I’m not sure if it’s just me taking things the wrong way, or if they’re trying to off me! Like their goal just seems to be “progression free” and no one is saying anything like “NED” or “remission” or “cure.” I don’t know if their vocabulary is going to switch up later on, or if those are just not…options for me. I mean, I knew this was going to be a kind of longer term thing, but…uh…I’m like legitimately scared. I’m probably just overanalyzing each individual word and on too much medication, I dunno.

Scared and Alone

In college, I had good friends that I could count on. A (co-ed) fraternity full of them, in fact! Now that I graduated, I live in a different city, and they’re all so far away. I don’t talk to too many of them anymore, and I don’t really have any friends here. Most people check up on me every once in a while, but it’s usually a text asking how I’m doing, and once I answer, then they feel they’ve satisfied their duty as a friend for a few weeks, and I don’t hear from them for a while. Maybe they just think I’m too busy to talk or that I want to be left alone, but I don’t, and I’ve tried to express that. Maybe I’m being too needy, expecting too much of people that have their own things going on right now. I mean, I probably am, but it’s just how I feel, and it’s hard to change that. I have one friend from college that I do keep in touch with on a regular basis, but she lives 7 hours away, so I can rarely see her. I just feel so lonely here. My family is amazing and they’re great people, but they’re just so stressed that they’re a little absent-minded as of late, and it feels like I’m talking to a wall when I try to talk to them. I’m sad pretty much 90% of the time, mostly because I’m doing this somewhat alone, though not completely. I probably feel more alone than I actually am, but that still hurts. Even texting doesn’t seem like quite enough on the really bad days. I’m the kind of person that…I just want to be in the company of a good friend, and that by itself tends to make me feel better. I’m really just scared and alone. That’s how I feel right now.

Chemobrain and…

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*

Keep Calm and Enjoy 2013

I’ve been thinking about my own mortality a lot recently. Not to be dark and gloomy or anything, but I’m a little scared. I’m sitting here, core body temperature nearly high enough to boil water (kind of an exaggeration), and I realize…I have a serious illness that could kill me. I could die. I could be dead soon. These thoughts start repeating over and over in my head in a variety of different grammatical constructs, but I’ll spare you the superfluousness. Now, this is not the first time I’ve realized this or had these thoughts, but after so many tests, procedures, surgeries, and treatments, those thoughts can fade into the background and randomly resurface on nights like these.

I have been really stressed out and depressed lately, but thinking back…in my short 22 years of life, the vast majority of them were wonderful and amazing. The ones that weren’t so much so (2012, if we’re naming names) had their amazing parts, as well. I’ve had a very blessed life up to this point. Last year, I graduated college and was accepted into medical school. That’s huge! That’s been my dream for as long as I can consciously remember (NOT an exaggeration).

I talked to my mom today, and she reminded me that a lot of people get depressed this time of year. She’s right. She suggested some things that I do, and her suggestions are always very good. I should take them, but will I? I’m not sure. It depends on how motivated I feel towards doing anything at all.

I talked to a friend of mine, and she pointed out that no one knows how long they have. That seems so obvious now, but it’s something I never really thought about, I guess. I mean, unless you have some kind of life shaking event happen to you or someone close to you, most people tend to take it for granted that tomorrow they’ll wake up and jump right into the daily grind. Anything could happen to anyone at any time, I just get slapped in the face with reminders of my own mortality more frequently, that’s all.

Life is really short. I’ve been really angry and upset about what’s going on in my life right now, and I still am, but right now…in this moment…I can actually have some perspective and focus on all the things that have gone right. There are so many more of those that it just doesn’t seem fair to discount any year as a loss, really. Even though 2013 has not gotten off to a good start by any means, I’m still here to experience it, and that’s half the battle, I guess. I’ll see where this crazy life of mine takes me next.

Rambling On…

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?

OH. MY. GOD.

I was exhausted yesterday, and was able to fall asleep with relative ease last night. Fairly early, too. I was really excited about this, because I usually will lie awake in pain, and that’s not the way I like to spend my nights. Imagine that!

However, I woke up sometime in the middle of the night in the most excruciating pain I have ever felt in my life! Oh. My. God. I can not even begin to describe the way I was feeling, and I don’t even want to think about it too hard right now, because it was both horrendous and terrifying. I started to scream for someone to do something about it, but then I felt my voice catch in my throat, and all I could do was whimper and cry.

I’m still not exactly sure why that happened, but all I know is that I’m not in that kind of pain right now. I hope that NEVER happens again. I’m getting scans and tests in addition to the few I had last night in order to figure out what happened. For now, I’m going to take a nap, because I’m still exhausted.

We Just Want Answers!

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.

Crap.

So apparently I have new mets to my bones and my lung. Freaking excellent. I’m 22, I haven’t even done adult stuff yet. I’m not giving up or anything, but dammit! Why? I’m really scared. And, Oh.My.God.The.Pain! I just want this to hurry up and be over, whatever over is going to mean for me. Please! Today is just not a good day.

I’m so nauseous, I don’t even know what to do with myself. I can’t even make half of an effort to look at anything remotely edible today. These anti-nausea medicines are just not doing the job today…and they tend to be okay. Plus I’ve been coughing up some blood today, which scared the bejeezus out of me. And now these other doctors are talking about stuff like surgeries and palliative radiation for the bone mets…thalidomide in combination with other therapies, I don’t even know. Because apparently, we have to be more aggressive. We haven’t been aggressive enough. This thing is aggressive. He loves the word aggressive! 😡 GAHHHH But whatever they think is going to work, I’m willing to try, I suppose. I just fee like they’ve run out of options, and I don’t want that to happen. That scares me a lot.

Another thing is that everyday there just seems to be more bad news. When it rains, it pours. It really just doesn’t end, does it? I’m not even asking for a good day. I’m just asking for a day when nothing happens. A day when I just wake up, read, and go to sleep. Or how about days where I just sleep all day and do nothing, think about nothing, and worry about nothing? But that’s way too much to ask for. -____-

But what can you do? There’s literally nothing to do except keep pushing forward, because I’m not a quitter. Blah. I’d like to think that things happen for a reason. Please let there be a reason for all of this. A good reason. Cue obligatory once a day smile 🙂 and…NGUNS! Ok, I got this. I do.

RIP, Brittany.

So…this girl I know was just killed the other day. She was in the military, and her vehicle ran over a land mine. Wow. That’s insane. I never really feel like these kinds of things would happen to people that I know, even though it happens to people all the time.

It just really scares me now more than ever, because my little brother is dead set on going into the Marines. 😦 I just don’t want anything bad to happen to him. My mom knew her and knows her mother, and now my mom is freaking out thinking about my little brother wanting to go into the Marines. I understand that.

RIP Brittany. Thanks for serving our country.