Wednesday, August 29, 2012

Jordyn Eve!

That title probably doesn't make much sense to you guys, but tomorrow Jordyn and my Dad are flying out! Can I describe how excited I am/express my happiness in words? No. Not even going to attempt. Everyone here is probably so annoyed of hearing it, (the doctors and everyone) but I've never been more excited about something in my life!


So today was short! EKG, blood test, radiation. (I made them take out my IV it's so uncomfortable I'm just going to endure a prick tomorrow- but the look on Diane's face was PRICELESS when I made her floss my teeth last night)

I was a little frustrated this morning because my dizziness and some pain came back, but it's impossible after meeting the amazing people here to feel sorry for myself. Even though I'm struggling with the hair situation.

 I've met some amazing people. Just this morning I met Lexi, she was diagnosed at age 3 with absolutely no hope (very severe diagnoses). Today she is 17 just like me, but in worse circumstances, yet still one of the happiest people I've ever met. Halo cast and more (I am choosing not to go into detail on this one). She told me people judge her when they look at her (you can tell), and she's the most confident person in the world. She's beautiful.

My nurse made me hummus! I'm telling you these people are amazing.

I love smoothies, so today I got a strawberry one! I was overjoyed.
Anyways, we went shopping again at the grocery store. Then went back to the Ronald McDonald house!
I prefer to think of this more as a vacation rather than home, but I like it here.

I had a seminary pizza party tonight! It was so fun. We had Korean Popsicle's!

Now I'm back at the Ronald McDonald house ready to take my pills which we are cutting the dose on at midnight. I'm nervous!

I know what I'm going through is difficult, but I've come to realize, EVERYONE has it hard. Like in the talk I posted yesterday, "No one is exempt" We are all going through trials every day. We are all in different circumstances, but we need to know God loves us and is EXTREMELY aware of what we're going through. After all, he's experienced everything we have. I'm still Rachel. I still want to hear about you guys! I care so much. 

Sometimes I wish you guys could walk a day in my shoes, just to see, the way I've been able to, how God has his hand in everything. Life is so wonderful. Never take a minute for granted. We are all struggling, but we can push each other through.

Rachel


Tuesday, August 28, 2012

Longest Day Ever!

Longest day ever=Long post. SORRY!

Today we woke up late, we were supposed to be out of bed at 6, and got up at 7. I'd been awake since 4 so I don't know what I was thinking. So we rushed to breakfast and all my crazy appointments, and apparently we weren't the only ones running late!

So first after a LONG wait, and an EKG


we went to get my IV in. I wanted to put it in my hand because it will be left in for 3 days and I don't/am not getting a line. I had put numbing cream on in 3 different places at breakfast,


 and ironically the first place we chose to try ((my left hand) with the most numbing cream that I told was a great vein) blew. I was a little frustrated. But then we tried my left arm, where I didn't want it cause it's a rather inconvenient location for a 3 day tube. But it worked! It didn't even hurt! So I was relieved. UNTIL I went in for the actual blood draw. They said they didn't know/didn't even try to see if my IV worked, and stuck me in my right arm too! Luckily it didn't hurt and it wasn't an IV, just a little prick.

I've been really blessed with needles today. I think I'm getting the ability to handle them a lot better. It's just a little uncomfortable in my arm having (choosing) to write this!

 

It has to be in for 3 days because they need a 1 hour, 2 hour, 4 hour, 8 hour, 24 hour, and 48 hour sample of my blood. (I think that's all)

Moving on! I met with some new lady about life. Fortunately her job is to make sure things run smooth for me, and I didn't feel depressed talking to her! She was such a sweet lady, I was really nervous for the questions I was supposed to answer, but they actually made me feel better about my quality of life. Even though my side affects are worsening fast, things could be a whole lot worse.

We then had lunch. It was the first time I've tried lamb before. I loved it!


It''s probably a really good thing my appetite is gone.

There at that time was some sad (private) news in my extended family. (No questions please:)) but I was really kind of terrified for a moment, then I felt the spirit really strong around me. The most peaceful feeling in the world.

At 1:05 PM I started Chemotherapy! It's oral. I'm on a study with "Crenolanib" Good news: it didn't make me throw up! (yet.) Bad news: It makes me feel morbidly obese! I feel like a bloated, beached whale. Fortunately I am on nausea pills. So we're just going to try to endure this one! This is me taking my very first chemo pill!


I was elated to finally hit what I consider to be my starting line. It's been a hard thing knowing I'm going to have to fight cancer, but haven't really been able to do anything besides take steroids which  only change my appearance dramatically. But after this point I was so excited, I crossed the starting line at 1:05.

So basically I lounged in a hospital bed and watched the Andy Griffith show with Diane all day. Well mostly slept. But still.

Next I started radiation! We got a blood test, and then went downstairs. So we got my music playing, my mask on, the lights off, and I had my first round (lasted around 15 minutes) of radiation (irradiation, whatever that means!) My hair smelt like it was burning. They said that was normal and next time to bring lifesavers to suck on. Luckily I've always been a fan and have TONS already so I popped one in right there and then and all was well! It is probably just mental anyways. I'm trying to not think about my hair for the next couple of weeks I still have it.

Dinner was hard. I don't feel the best stomach-wise right now so I was able to eat some chicken noodle, and a Popsicle. I have never enjoyed a Popsicle more in my life than I did tonight.


Next I just napped. I was a little on the grumpier side. I've never been more tired in my entire life when I was woken up for my next blood draw and EKG.

We were able to relax until the final blood draw of the day. What a relief! I felt a little more energized. So after about 12 hours in the clinic, we went to the grocery store (my idea).  After two minutes in the produce section I felt like I was going to die I was so tired. But we got some essentials, and headed back to the Ronald McDonald house where we are now. And so ready to sleep.

Thank you so much for all the things you guys have done and said to me. I don't know what I would do without you guys. Everyone of you is such a blessing and a miracle in my life. I love you so much! Even if we don't know each other personally.

Rachel.

PS: This is a link to a talk one of the leaders in my church gave. (Not me trying to preach!) It has just helped me so much through my life. And it has brought more meaning than ever in my life and current situation. Take what you want from it, even if you're not religious it has some great advice and humor, (everyone needs a good laugh)
http://www.lds.org/general-conference/2008/10/come-what-may-and-love-it?lang=eng

Monday, August 27, 2012

Week 2

Today was an emotional roller coaster. (Not the smoothest ride)

I woke up today very early, with such high energy I went on a 5 mile (stationary) bike ride. Needless to say I felt very accomplished.

So Diane and I went to the clinic, and mail room where I got a package, I was so excited!


I went to school. It lasted 17 minutes. I go 3 hours a week.

Then I went to my "child life group visit" AKA group therapy for teens. It was fine while I was there. But afterwards, I've never felt worse in my life. After lots of complaining, crying, scriptures, prayers, and realizing I wasn't completely ready to talk about my feelings, I calmed down. It didn't help that no one besides me believed in anything. They were all so depressed. But Diane always has a way of making me feel better.

Lunch was so good! I love vegetables.


I moved today! To the Ronald McDonald house. I was terrified, but I like it here!


Tennessee drivers bring new definition to #prayersforrachel

Tomorrow I start chemo and radiation. So nervous, but it's time. I'm ready. It's going to be the longest day EVER! And I'll have an IV for the next 3 days I think. Here's my schedule.


Anyways, I'm exhausted!
Love you guys tons and tons. XOXO
Rach