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,
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.
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)
Haha, you make me laugh! A beached whale! I love you :D you are doing awesome!!!!ReplyDelete
Great to hear things went so well today! You'll be a pro at the needle thing so quickly :) Why is it that hospitals don't have good cable? I mean seriously, i bet dish would give them a discount! Unless you were thrilled you caught that episode :) then hopefully I didn't offend :p But I guess it's better than all those daytime court shows or a blank wall :) Have a great day tomorrow and hopefully they will have installed cable before too long!ReplyDelete
Of course you had lifesavers. Probably costco-sized. I am glad you finally began treatment! I can feel less anxious now! Also, I'll buy you as many of those popsicles as you want when you come home!ReplyDelete
Hi Rachael, I stumbled across your blog not too long ago. I know you are fighting a hard battle here, but I truly believe that you will make it and come out the other side. I will keep you and your family in your prayer.ReplyDelete
A friend of mine suggested checking out your blog- and I have since read every post- and will continue to follow you. YOU are amazing- I am a decade older than you... but you are decades more mature than me- you are an inspiration- keep that beautiful smile on your face! (even if it is puffier than normal! ;) )ReplyDelete
My momma and I prayed for you all day today!ReplyDelete
Ah! Rachel you are so amazing and so ready for anything! I hope so much to have your wonderful attitude and spirit! peace and love girl.ReplyDelete
Rachel you are so so amazing:) We hope the best for you and you are certainly in our prayers! Thank you for your wonderful example and optimism:) Love you girl!ReplyDelete
Rachel, you are a beautiful young lady!! I found you on the DIPG group. God has his loving hands under you and your family carrying you through each second on every day....he won't ever let you down.... I have to tell you that I also have identical granddaughters and they are the best of friends and they also have a brother that completes them as triplets. All my prayers for a comfortable day and may God bless you and your loving family Dominic's grandma MarlaReplyDelete
Your positive spirit is so beautiful.ReplyDelete
I love that you are documenting every step of your journey! It makes us feel so close to you, and it will definitely be a blessing to you and to your family when you make it through to the other side of this trial. Lots of love from the Hansen family!ReplyDelete
P.S. You have the most beautiful smile, and neither the chemo nor the radiation can take that away from you! You look great!ReplyDelete
Praying for you!ReplyDelete
I was so glad to see a post from you when I checked this morning. Sounds like you made it through yesterday with (almost) no problems (darn vein)! To see someone smiling while taking a chemo pill is uh-may-zing! I'm glad you are on your way toward beating this thing. You are in God's loving hands!
Love and hugs and prayers!
U r so brave ! I want u to know that it has helped me to read your comments about faith Abd see your ultra positive attitude . I love how u share the gospel truths like feeling the peace of the spirit today ... It confirms to us all that even in hard times the lord provides a way and that is what matters . For being so young your faith is many years older !! U r absolutely amazing . I know it's hard ... But u r doing awesome . Thanks for sharing!!ReplyDelete
I found you through the Sadie Huish blog. I just wanted to let you know that you are amazing. I love your testimony of the gospel and the hope that you bring. You are a beautiful girl inside and out. My prayers are with you. Keep up with the hope. You are so positive. Thanks for sharing your story.ReplyDelete
No more apologies for long posts--we like them!ReplyDelete
i love you and i dont even know you! what a trooper you are. You are in my prayers :)ReplyDelete
A friend of mine showed me your blog. All I can say is that you are a gorgeous girl inside and out. I can feel your spirit as I read your posts. You are in our thoughts and prayers. Two people can do anything if one of them is the Lord. Anything is possible and you can do hard things. Much love from Cedar City Utah.ReplyDelete
I know things are hard for you right now Rachel, but God is on your side and He has a plan for you! I know you can do this, keep working and don't ever give up! God is with you! I'm praying for you every day and I know a lot of other people are, too!ReplyDelete
"When you are going through difficulty and wonder where God is remember the teacher is always quiet during the test."ReplyDelete
May you continue to feel the quiet whisperings of the Holy Ghost. May He sustain you and provide you with peace and courage through this trying time.
Rachel you are amazing! thanks for the talk I've been having a hard time and that was really what I needed! You are so inspirational and I love reading your blog.... I'm definitely a groupie!! love you lotsReplyDelete
Rachel, I read your blog everyday and we are so praying for you and your family. I love that talk from Elder Wirthlin! In my time of need I have referred to this talk and have gotten a lot of comfort. You are strong and beautiful and we are all praying and loving you!! God bless you!!ReplyDelete
Hi. I recently stumbled onto your blog. I'm not one to be a genius with words but here goes. I have been praying for you and I know in my heart that if you will keep doing what your doing you will be blessed beyond belief. I have seen it in my life and and many others also. While the battle may be hard, and the road may seem long there is always sunshine after the storm. Just felt inspired to tell you this. Trust yourself, and your heavenly father and in the end things will turn out all right.ReplyDelete
If you were to have a favorite Disney character who would that be?ReplyDelete
Rachel! I'm so glad that I found your blog!!! Shannon Swain told me about it...hello Kylee and Jordyn- they could have told me! :) You are amazing Rachel! I love how you are choosing to have a good attitude- and it is a choice. Way to go. We are cheering for you- you can probably hear us where you are. You will continue to be in our prayers, and I know you will feel those as well. Hang in there- you are AMAZING! Love you Rachel!!!ReplyDelete
Rachel! I love your humor:) keep it up!! Beach wale....haha my favorit word of the day!! Are you out of the macdonald house yet? ONE MORE DAY till Jordyn and your dad arive!!!:) ahhhh so exciting for you I am sure! Varsity soccer beat MV 5-0 JV beat them 2-0. Fun stuff. I'm glad the needles are getting easier. Did you see Syd, my, and Lexie's picture?! I think it's on insta. But as you know...I suck at insta. haha cya soon :)ReplyDelete
Sent here by Team Sadie...ReplyDelete
Praying for you, Rachel!
I love that talk and I am so glad you posted it. I needed to hear it again. You are so inspiring. This is the second time I have come across your blog and I cry every time I read your blogs. I feel the spirit each time and I love that feeling. Thank you for sharing your life with me and so many. I truly am sorry for the pains you are suffering. I know that you are making a difference in my life and those that come in contact with you. Thank you for your strong example of turning to the Lord.ReplyDelete
I look forward to reading more.
Love, Heather :)
this is a hi from the Spieths aka Jessica Swain-babysat u a couple of times. Just want u to know your getting prayers from Sacramento, California. Me and my husband read your blog together. U are such an example to me! Love u and ur family so much!