Tag Archives: doctors

Someone Wrote This About Me

25 Aug

I know a 23 year old girl who has been declared disabled. She has had several types of cancer. She is weak and always sick. She coughs up blood. She is thin and can not eat solid foods. She visits the ER at least every 3 days to get blood and fluids and meds and nutrition to keep her alive. She has every right to give up on life. She is in pain all the time. She has been like this for over a year now. The doctors told her she has a less than 10% chance of surviving what she has.…

Do you know what she did last week? She started her next year in medical school. After her first day of school, she ended up in the ER to get blood. She then went home and started reading a required text that will likely take her most of the year to read. After the third day of school, she had to call an ambulance to go to the ER. She was coughing up blood and choking on it. She had procedures and then went back home late that night. She managed to get to school the next day. She still drives herself. She wants to be a doctor, and she is not giving up on that dream. She thinks everyday that this may be her last day. She is scared. She is in great pain. But, she is not giving up. 

It’s strange to think that I inspire people. It’s a weird feeling because I don’t know that I’m doing it. All I try to do is get through each day. When people tell me that they feel inspired by me or that I’m so strong, I usually end up feeling awkward. But somehow, this struck me. It showed me how by doing what I do, it can actually mean something. That motivates me to keep going even when it seems impossible. Thank you for believing in me. I will try not to let you down.

Misery

18 Jul

Well…I have some kind of infection, the doctors haven’t figured out what yet, but they’re thinking a virus because the antibiotics haven’t knocked it out. My temp is still pretty high, and they’re using ice packs for it, and they’re freezing my butt off. I had some seizures, too. I’ve been having some pretty intense bouts of vomiting, and I can’t eat anything by mouth, so I’m on TPN again. I’ve been a little jaundiced, and I’m not having any urine output. Fluid is building up in my lungs, making it hard to breathe. I still don’t know why the stomach pain is so bad or what exactly is causing it now, but they’re giving me morphine every few hours, which is odd because I normally get fentanyl or dilaudid. But they’re pretty much keeping me knocked out all day, because when I wake up, it’s pretty much just miserable. Naturally, my mom freaked out and called a bunch of doctors she knows, and they’re trying to figure out what I have. My family caught a flight and they’re here now. My mom is trying to get me transferred home. Through all this, I did get a guy’s number, though. He was visiting the person next to me and said my smile made his day. That kind of made my day. There was this nurse, though, that would not smile for the life of him! I tried to get him to crack a smile because he just looked so miserable, but he just absolutely would not smile. Oh well. I tried. I called some people today and talked to them for a little while. I wrote some nice notes to people and listened to some music when I wasn’t sleeping. Today was difficult, but I tried to relax.

I Left.

12 Jul

Last night I went to the ER because I was in so much pain, I was vomiting blood, and I had a ridiculously high fever of 104. They were able to stop the bleeding, reduce the pain, and bring the fever down to 102, but the wanted to admit me. They put me on broad spectrum antibiotics until they figure out exactly what type of infection we’re dealing with here. But you know what I did? I left. I just…walked out. Enough of this crap. I wanted to go home. My friend, Kristi, is coming to visit me today and I wanted it to be a visit at my apartment, so I left. I’ll just take a bunch of Tylenol and hope my fever goes away, I guess, I mean what can you do? And I went to the pharmacy, I have antibiotics that were prescribed, I’ll take those. I want to be in my own bed, puh-lease! For at least a week, damn! Is that too much to ask? Seriously? It’s my birthday this weekend, can’t it please just be good, please?

I really thought I was a goner last night. I panicked. I get annoyed when people try to sell me on bull. I know miracles happen, I’ve been praying for one. But I also know that God created doctors and scientists who come up with medicines, and He made science, and these people are pretty smart. They may not always be right, but they’re right a lot. I hope for the best, but I also prepare for the worst so as not to be caught off guard. Few people will let me talk about it. They keep telling me I’ll be fine, but you know what? I’m not fine. I have a legitimate fear that I will die from this, and I feel like people are invalidating my feelings. Everyone acts like no that could never happen, not to me. I don’t want to die, but maybe I will, maybe I won’t. Hopefully I won’t, but there are two outcomes. I guess this is why I need a counselor. People say that we’re all going to die, and that I’ll die eventually, but I sure wasn’t planning to come this close in my 20s. There’s blood all over my bed. Last night was bad. I wish I knew what God’s bigger plan for me was. Everything is so uncertain right now. I don’t like this constant uncertainty.

Tummy Troubles

3 Jul

Because of all the stomach problems I’ve been having recently, my doctors recommended that I cut dairy, gluten, and soy out of my diet. That’s a lot of things to avoid. Like…I can’t replace milk with soy milk or with almond milk because I’m allergic to almonds…so no milk for me. Unless there’s something else that I don’t know about. I have to take more medicines to help with the issue, and right now it’s only liquids for me. Hopefully that won’t be for long, but in the meantime, I have no idea what I’m supposed to eat! I’m going to meet with a nutritionist before I leave, so they’re not just leaving me hanging, but I’ve just been sitting here thinking like…what in the world am I going to eat…drink? Water.

SRS

15 Jun

I start SRS for my lungs on Monday. I had my markers placed, my pre-treatment consultation, I’m going in 3 times, and I’m a little nervous. I know it’s not going to be a huge deal…I don’t think it’s going to be a huge deal, but I’m a little nervous about the fatigue that follows. I have research to do, places to go, people to see…well not really people to see, but I don’t want to be insanely fatigued. You catch my drift. I just want this to be over with as quickly as possible, and most importantly, I want it to work! A month from now I’ll get a CT to see if there’s any progress, and that’s the day after my birthday, so there better be some progress! The pain has been more under control recently, and so has the nausea, so that’s good. My parents are gone now, and hopefully we’ll get good news from my dad’s PET scan results ASAP. I didn’t get taken off of any meds, but I got the dosage lowered on one, so that’s good. I think that’s all for now.

Spring Break Cruise with My Bestie!

20 Mar

So…as I’ve been under tons of stress recently, I decided to go on the Spring Break trip with my class, and my doctors actually approved for me to go!! I really didn’t think they were going to go for it, but they did, ha!

My class is going on a 4-day cruise to the Bahamas…I’m a little nervous about the whole cruising thing, as I get nauseous enough on dry land, but you know what? Screw it…I’m all stockpiled up on Zofran and Emend and whatever other stuff I need (including those oh so important ones like Duragesic and Fentora), and I’m gonna have a blast :). What else was awesome was that my mom suggested that I invite my bestie, who lives in another state and teaches Kindergarten. Since this cruise is in the middle of the week, I figured she (having a real job) wouldn’t be able to go. I caller her anyways, and that’s her Spring Break, too!! What are the odds?!?  So, we’re going together! AHHH!!! I can’t contain my excitement, and neither can she!

This is exactly the kind of excitement that the both of us needed, and it WILL be epic! Now, all I have to do is stay just healthy enough to not ruin the plans, and I’ll tell you all about it when I get back. Yay!

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.

Pop a Pill and Proceed

8 Dec

My dad was supposed to have met with several doctors by now to get more information. This hasn’t happened, as they have been rescheduling and shifting around his appointments, so my mom decided to go ahead and find him a new doctor. He has a PET scan scheduled for Tuesday, as well as an appointment with a radiation oncologist and/or a radiologist. We should know more then. He’s been eating a variety of things, and now he thinks he’s paying the price, because his throat has been really sore today. He’s back on just hot tea and soup. Otherwise, he’s feeling alright.

I was supposed to have one of my medicines covered by my health insurance. Without it being covered, I most certainly cannot afford it. Not even close! But now, they’re saying there’s something wrong and they aren’t covering it for whatever reason. So my mom is going all “mama tiger” and helping me deal with the constant calls I’m having to make to see what in the world is going on. This medication (as much as I hate it) is kind of super vital, so they need to get it together so that I can get it. A new research project that needs to be started is how to make chemotherapy drugs more affordable. Also, the amount of pain I’ve been in recently is really upsetting. Something needs to be done about this. Something.