Relay ---- 1/8/05
I started planning my Relay for Life "schedule" for this coming semester. I don't know if I mentioned it, but I am the team leader for our hall this year, which is a teensy bit scary. Yet exciting! I've only been a co-captain and survivor before, so my excitement and enthusiasm are going to have to support the whole team. I looked up some fundraising ideas and some theme ideas, although I think I have come up with something pretty clever on my own! On my "schedule," I've written down practical ideas such as when to have meetings, but I have also written "Make it Fun" in big letters at the top!

Late Night Musings ---- 12/9/04
Alright, so I might as well voice the concern I've been having lately because it isn't changing. Every since treatments ended in 2002, I have never worried that the cancer was still there or that it had come back. Of course I have thought about what would happen if it did, but I have not been prone to worrying about every little ache or sneeze. Now I don't know what to think. I have had a cough for more than two weeks now. Just a cough. No cold symptoms, no runny nose, no sore throat, no congestion. Just a dry cough. So I went in to the doctor's yesterday, and they had me do a chest x-ray (wonnnnnderful) and then a blood test to check and make sure I don't have a blood clot in my lungs. The x-rays looked okay, but the doctor said that they would call back with the blood results - that if I truly had a clot it wouldn't be life-threatening in the next few days. Way to scare the hell out of me! No, but honestly, I had a cough for quite a while before they found out I had cancer. I never brought up the cough because I didn't think the two were related and it wasn't until deep into treatment that I realized the cough had been gone for some time. It still freaks me out about whether that would have been an important bit of info for the doctors to know at the time - it would have made me stage IVb instead of IVa I think?
Anyway, I'm taking two different medications right now, and I'll give them another day or two to truly freak out, but I'm still coughing.
Well, so. Tomorrow, or I should say today, is Stop Day and I have no classes and am going to sleep in and do nothing. Except maybe read The Plague so I'll be ready for my final on Monday. Great book for me to be reading right now, really. Oh wait, just kidding. I don't know why, but I bought some fingernail polish yesterday at Walgreens when I was getting meds and now my fingernails are orange! It's quite a pretty shade, and I like it, but maybe I guess I'm a little behind seasonally.

I am so selfish ---- 11/17/04
I feel so dejected right now. Who am I and what on earth am I doing with my life? The girl who was my "twin" chemotherapy partner three years ago was on the news tonight, and it looks like she is doing absolutely amazing. She is the junior class president at her high school and she is the chief editor of the yearbook as a junior, which is quite a feat. She volunteers at the children's hospital we went to and is a teen advocate. And I'm sitting and watching all this in amazement but I cannot lie that there were some feelings of jealousy and inadequacy brought up. She looks amazing - her hair is absolutely beautiful - and she is involved in so many organizations. The reporter mentioned how she had to give up dancing because of a joint and bone disease caused by the chemo, and that it is painful for her to even walk sometimes. I know she loved dancing and her mother spent thousands of dollars on the pursuit. And here I have been so vain about my appearance lately, which makes me feel foolish. I literally cried about my hair at the beginning of the semester.

Is it fall yet? ---- 9/22/04
Had my oncologist visit yesterday. They took 6 tubes of blood which seemed a little excessive! I think they were testing my thyroid again. Hope that's alright. They also told us at the last second that I needed to go get a chest x-ray. I'm still not quite sure of the purpose of those as they didn't help detect my cancer in the first place...Anyway, my next visit is in six months, right around when I turn 21, and after that point I will have to make the transition over to an adult clinic and stop going to the children's hospital. That's going to be hard...But I'm 30 months out from treatment, which sound really good to say out loud!

Fond Memories ---- 12/12/03
Haven't written anything particularly cancery lately, but I randomly remembered something that amused me, so I thought I'd jot it down. I remember during treatment that my dad had driven me into town so that I could buy some new jeans. The prednisone had stretched me out enough that none of my clothes fit anymore. I was feeling pretty happy about my purchases as we left, but I started to feel a little icky when we got out to the parking lot. It wasn’t horrible, so I thought I could make it home. I was wrong! As soon as my dad had started driving, I knew I was in trouble. Our car was brand new, and of course it didn’t come stocked with barf bags. As we pulled up to a stop light, I tossed my jeans out of the shopping bag and yakked. I can only imagine the experience for the people stopped beside us! And then the car smelled like peanut butter from my peanut butter sandwich the rest of the way home (my dad was thrilled!).

Caving and Shaving ---- 7/2/2003
I gave up and had my mom help me shave most of my hair off again last night. It had grown down past my chin, and now it's a little longer than a buzz cut. I doubt my hair will ever look like it used to (I admit it never was that hot to begin with!), but it was just looking so sparse and blah and thin, and it was getting to be a pain to wash it everyday and then attempt to style it only to get absolutely nowhere. So maybe it will grow back a little better this time since I'm a year off chemo and we got rid of the first scraggly growth! If it doesn't, I may just keep it short for awhile. It's kind of cute, and I can stick my head under the faucet and go! Plus, it's crazy hot outside, so it's nice and cool!

It's Monday Indeed, Mr. Vitamin D! ---- 6/30/2003
It seems like quite a few of the times I write in here, the topic seems to slide back to the same subject of my illness over and over, and I get mad at myself sometimes for doing it because it feels like I'm dwelling. On an average day, I can usually get so busy and wrapped up in things that I can forget for awhile. But I'm always eventually given daily reminders when I have to take my handful of vitamins in the morning and evening and when I do things like "brush" my hair. I guess I'm kind of used to the fact that this is a part of my life, and is something that I will never get away from, even five years out from here when I'm medically cured. In fact, I feel as if I almost don't remember life without all these memories and daily "rituals", as if I have always done them. It's weird how adaptable we can become. And it's kind of funny that I now rely on my pill box to help remind myself of what day it is!

An Old Green Book ---- 6/27/2003
In all the cleaning I've been up to, I found something this week that I didn't expect. A real life journal where my "List" originated, along with some quotes, and only one real "entry". It surprised me how I felt then...

From August 10th, 2001 -
"Here is where I am starting. Yesterday, I found out for sure that I have cancer, but the word cancer is usually associated with death and that is not what this is about. I think I already believed it was true a few days ago, especially when reading about people's experiences on the internet, because one sounded just like me. I was a blink away from crying so many times yesterday. I thought about how I would tell my friends. I think I also just realized how long my hair will actually be completely gone, and that hit hard. Laying in the CT scan wasn't scary, but I didn't want anymore surprises and pain, and I was thinking how Mom felt sitting there, watching me. She said she almost cried when I was feeling light-headed and faint after getting an IV in my hand and having blood taken, and she joked that I had better not do that again. I have just had so much to think about, and it kept me up last night. I thought about getting a port, and it made me mad that I will have another scar and will be unable to wear v-shaped necklines. This morning I decided that "Across the Universe" had a good mantra to follow because "nothing's going to change my world." I also realized that I like one of the TEB songs where it says, "the plans I make still have you in them," because I don't want anybody to feel differently towards me. I have not changed. I don't feel it is right to be crying about this now - not while I still feel and look healthy...not until I actually have something to cry about."

Man that was weird to read. I sound so vain; it disgusts me to read that about the hair and the scar that I never even ended up getting. As of today, I know that there is no way I'll be getting into a swimsuit anytime soon, but I feel I am so lucky to be where I am. A girl my age has died in this past week. I am lucky to be alive. I am lucky to have scars that I can point to. And I'm proud of them. They have not stopped me from wearing anything.

I'm Clean! ---- 6/16/2003
I'm STILL in remission!!!!!! My mom and dad and I all went in to the hospital on Friday morning to see my oncologist and get my PET scan results (I had been waiting to find out the results for two weeks. To be honest, though, I kind of forgot about them! Awesome!) The nurse came in for blood, tied my arm off really tight, and started cleaning off an area that did not show any signs of vein activity, so I was a little worried and ready for a struggle. Then she picked up the needle and hit a vein within two seconds! Damn, she was good! I must remember to request her!
After going over to radiology for an unscheduled chest x-ray, my onc met with us and gave us the good news that PETs were clean and blood levels were all normal! I kind of got a lecture from my new nurse practitioner that I need to be practicing better nutrition and getting exercise, but I have been trying. The exercise part is a little tricky because I'm not walking to class everyday, and I don't really have the urge to go out and stroll the neighborhood (my onc reminded me that it is normal for HD patients to feel tired for a few years, so I don't need to worry about it too much. I also need to remember that if I feel tired, I need to rest because I can push myself pretty hard sometimes). Then, my mom asked her typical 20 questions, and I think my onc answered them pretty well to help her feel better. I know she is worried and last year was really hard on her, so I just let her ask. It can only help.
My mom was talking to my grandma last week, who recommended that we go out and buy a vitamin called biotin to help my hair grow better. Apparently her hair dresser told her about it, a very reliable source apparently. But I'm ready to try anything, so I'm taking it!

Cue My Superhero Music, Please ---- 5/30/2003
I finally went in for my six month PET scan yesterday. I think it went well, but I'll have to wait a week or so for results. I felt bad at first for dragging my mom along on her birthday to come sit in a freezing cold lab just for emotional support, but we had a good time afterwards. Once again, it was the Heath Ledger look alike, and I just can't believe that he is the only one that runs the PET scan. There has got to be someone else, and I just have been unlucky in when my appointments are scheduled!
At least he has been able to practice giving injections to old people since I last saw him. With one poke and digging for a record low of about a minute, he finally struck oil..mmm....blood is what I meant there! When he left the room to go get the injection, I held as still as possible just to make sure the needle didn't wiggle its way out because it wasn't in there very deep. Then he came back carrying the little lead handbag (quite fashionable this season), pulled out the syringe surrounded by thick metal, and held the syringe as far away from his body as possible when he injected it into my arm. Makes me feel quite safe and all. Oh yeah...
The rest was some ol' same ol'...lay on the scan in the frigid room for about an hour. The machine goes through cycles that are about 10 minutes long, and then moves you a few inches and starts over. For about five minutes of the cycle, the machine sounds like it is taking a coffee break because absolutely nothing happens. It is very frustrating.
The rest of the day was nice, though. We went out to eat for my mom's birthday and we rented a bunch of movies from Blockbuster. Also, my brother and I had a lot of fun in the car annoying our parents. Whenever he said something rude, I held my hands up near his face and made a "ZZZZZZZ" sound as I sent my radiation his way, and he would cover his head with his magazine and mock scream! Then we had a hilarious discussion about what super powers I would inherit if the radiation did in fact change my genetic code and turn me into a superhero. Hey, Peter Parker got bitten by a radioactive spider and turned into Spider-man, the Teenage Mutant Ninja Turtles had some radioactive waste dumped on them, and the Hulk had some horrible accident which I'm not too informed about because I never paid much attention to the Hulk. It always looked like a stupid comic.
I think I would want telekinetic abilities, or maybe it would be nice to fly. We'll have to wait and see!

My Body Rocks! ---- 3/21/2003
I'm feeling pretty good right now. I just got back from my second day in a row at the hospital and everything is looking great. My bone density has improved extremely well, my heart is normal, and they said my pulmonary functions test is even better than last time. PFT's are kind of fun. You are shut in a big glass box and you blow into this machine over and over. And then you hold your breath sometimes and then blow it all out, squeezing out every last bit of air until you think you lungs are going to stick together. And then they give you stickers! I picked out some Veggie Tales ones to take back to my roommie.
EKG's are also easy and fast - my kind of testing! They stick some really cold stickers on you, tell you to hold still for a couple seconds (which I messed up on somehow!), and it's over. Echo's are a teensy bit nastier, depending on which technician you get. The lady I got yesterday was a pusher, jamming her little wand really hard into my ribs and boob and then holding it there forever and ever. It got to the point where I was about ready to smack her hand away or shout something to the effect of, "Good lord, that hurts. Enough already." Same thing with blood draws today. For one thing, the nurse went straight to my hand. Why the hand, huh? I've got blood plenty of other places on my body. And then she missed and she kept pulling the needle out a little and pushing it back in because my vein kept "dancing away". She did that like eight times until she finally pulled out...and went for my other hand. And THEN, she took about 7 tubes of blood. I know they are all needed for CBC's and loads of other tests, but do they really need half a tube for each test? I think about a drop would suffice in some cases. Now, all I have left is a PET scan...oh joy!

Phew! The Dentist Scares Me ---- 1/3/2003
I had my first dentist appointment in 2 years this morning. And I was quite intimidated. My last appointment was scheduled for August 2001, but of course teeth were the least of all worries then. After reading cancer message boards about other people's dentist appointments after treatment, I came to believe that I would come out of the dentist's with about 10 new holes in my mouth. Not something to look forward to in any case.
Anyway, before the appointment, my mom and I talked about it and we decided that it would make us both feel better if they didn't do an x-ray on me. I tried explaining it to the assistant, and I guess the idea seemed far too presumptuous because she gave me a look...kind of squinted her eyes and twisted her mouth up real tight for a second. Hmmmmm. "Let me go ask the doctor." They finally said it was alright if I skipped it this time, but that I should plan to do it next time.
Then I got a lecture on all the benefits and statistics of x-rays. Apparently, you would have to do something like 1000 x-rays using the dentist's machine before you would even get a sun burn. Well that's nice to know. I guess I'll be going there for my tan this summer.
I don't care if their machine isn't very strong. It's still an x-ray. An x-ray is an x-ray is an x-ray. The last thing I need are more alpha particles bouncing around screwing with my genetic info in an already screwed over body. Right in my jaw/neck area, too. That's a great idea. Back to where it all began! They don't understand that it's one thing or the other. Sure we want to know what is going on with my teeth, but at the risk of making things even worse in my future? I'll take the cavities, thank you very much!

One Year With Cancer ---- 8/9/2002
As I was crawling into bed last night I started thinking. It's been almost exactly a year since my life changed. Last year on August 6th, I had my lymph node biopsy, so right about now would be the long, drawn out week where we were waiting for the results to come back. I just remember that it took them forever. They said they would be done one day, then it was one day after that, then another, then another, and finally answers, but not the ones we wanted to hear.
I also started thinking and trying to recall things that happened this last year. And I realize that I don't remember Christmas. Or New Years. I don't know where we went or what we did. And I feel terrible. How could I have forgotten these things so easily?
Time is sneaking up on me in other ways too. I realized that next Sunday, I will be moving into my dorm. And all I can think is that I'm not ready. It's a little strange, but I almost don't feel like I'm old enough to go to college. I compare myself to the other people I have seen on campus, and I feel so insecure and tiny. Like I'm still a little 10th grader and I shouldn't be there. And the time is bearing down and I still need to do something about my soon-to-be roommates. I need to find a way to tell them about who I am. Sure, they know a lot about me, but not the main bit. I just can't think of a good way to get it out. I don't want it to be weird, but I don't want to drop it on them on our first day together. *Sigh* I'll think of something...

I Am Still Happy, I Swear!!! ---- 7/31/2002
Yesterday, I went in for a bone density test, which was really fast and easy! No radioactive injections and no drinking gross concoctions. I just laid down on this table and had a shiny metal arm go over me a couple times and I was done in about 10 minutes! This is a completely new thing to me...getting out of the hospital within an hour! My radiologist, Nuclear Nancy was the one running the machine, so it was nice to see her again, since I am not doing the gallium scans anymore. I don't know when the results come back, but I am a little worried...
And I can't remember if I wrote this before, but I got the official phone call the other day from a nurse at the adolescent clinic. She told me for sure that my ovaries are not working at all, so that's that I guess. It seems like all I ever have for this diary now is bad news, but I am not completely unhappy and depressed all the time. I will try to stay more upbeat, because that's who I am (although I do have to write down the crappy things so I will remember they even happened! I've been forgetful lately)

The Gyno…*sigh* ---- 7/18/2002
My appointment to the gynocologist, which was scheduled forever ago, was yesterday. The doctor basically told me that from the description I had given of what I have been going through, my ovaries have been damaged by the chemo and I probably won't be able to have children; she said it had happened before, but that it required you to be on a lot of drugs (she sounded like it would probably be a miracle...) I am being put on birth control pills for 6 months just to give me some hormones again, which will stop my hot flashes, and might be able to get things going again. She said we will just have to see, so I am crossing my fingers! Things may work out...you never know...

Anxious, Nervous, Worried… ---- 7/15/2002
Ok, I have lots of things to do this next week, and I am getting so nervous about all of it. Tomorrow, I go in for enrollment at KU, which I guess I am ready for...I haven't really been looking at the course requirements until today. Whoops!
Then, on Wednesday, I have to go in to the gynocologist for the first time (eeekkk!!!). Since I have been having hot flashes for months, and my period has not come back (which I am NOT complaining about!), my oncologist wants to have my blood hormone levels tested (and hopefully that is ALL they do!). He said that it is a possibility that my ovaries have been damaged by the cytoxan that I had to have each chemo cycle; he said he has seen it before.
So, if that proves to be the case, I may be going through 'menopause' and I remember him saying something about putting me on hormone replacement. Funny thing is, I just watched the news a couple nights ago and heard them say that a new study of women that were on hormone replacement drugs had an increased chance of getting cancer...lovely!

Shopping Is…Fun ---- 7/6/2002
I just don't understand people sometimes. Today, we went to the mall, where I haven't been since my Make-a-Wish day, but that is probably a good thing. Every time I looked around as we were walking, I would catch people sneaking glances at me. And even when I didn't see anyone staring in my direction, I still felt like eyes were piercing through my back.
Like I have said before, I can understand little kids staring at me, or asking me questions. I remember when a little kid in the elevator at the hospital looked up at me and asked me why I had to wear a face mask over my mouth! Little kids don't understand and they are just being honest. But teenagers and adults...you would think they wouldn't be so blatantly rude. Sometimes, I really wish I knew what people like that are thinking in their heads...maybe that I am some crazy kid that decided to buzz off her hair, a lesbian, a boy...or maybe they just pity me and think staring at me will make me feel better!!! It's just...bizarre!

PET Time Again! ---- 6/25/2002
Well, today I got to go in for a wonderful PET scan. And that phrase was dripping with sarcasm! The entire day started off bad. I woke up at 11:30, which meant that I couldn't eat anything because I wasn't supposed to eat solids after 10:00. I smacked myself in the head for that one. By the time my scan was over at 5:30 pm today, I hadn't eaten for over 21 hours and I was hungry like a bear!
Every three months, I have to go in for a PET scan, which stands for Positron Emission Tomography (which I didn't know until about 2 minutes ago when I looked it up!) It only takes an hour and a half, compared to the 3 days with a gallium scan, and it is supposed to be the future of scanning, but it is still a pain in the butt.
For one thing, I got the same technician again, which I was praying I wouldn't, but there he was when the door opened. Grumble. He looks surprising like Heath Ledger, which isn't horrible, but he isn't all that bright and sucks at putting in an IV! I'm squirming just thinking about it. He first tried my hand, which didn't work, but he dug around for about 2 minutes until he finally decided that! Eeechk! In all, I got poked 4 times! After he inserts the radioactive solution, I have to sit all alone in a dark room for over a half hour, doing absolutely nothing. After that, I get to lay in the scan for an hour doing...absolutely nothing. I got pretty lonely, not to mention the fact that I blanked out for the last half of the scan from pure boredom...*sigh*

this is reality :: be good