Thursday, January 15, 2015

2015

I apologize for not having written in such a long time. But--- I AM ALIVE! It's sort of incredible how big the miracle I was just delivered is. I always believed in miracles and hoped for miracles- especially for my healing- but I didn't know how much faith I lacked until I received my miracle. I am alive, and I feel horrible for saying it especially around others that I've met during this experience, but I found it necessary and healthy to be able to say those things without feeling a tremendous surge of guilt.

So right now my trial is figuring out how to live a normal life again. I was at primary children's 2 days ago and they are all still so blown away with how well I am doing. Nobody really understands what's going on. I think my doctor puts it best when she says "well... I do believe in miracles," I guess that would mean I'd be an idiot if I didn't.

The only thing that I am currently struggling with is some after affects of Radiation. I have a hard time with memorization and recalling things off the top of my head, (especially names, so please forgive me)! I am seeing a psychologist next Tuesday about trying to fix those areas of my brain with some long test, and it's honestly sort of terrifying. When he said there would be an IQ exam my heart kind of sunk. He then went on to ask me my ACT score- let's just say I am definitely not a test taker but reassured me that his score was even lower than mine, so I feel like this will be a good, non-condescending visit.

I say non-condescending because a few weeks ago I went to see a counselor at UVU to try and help get me back into an actual school setting, (right now I am doing online BYU classes and it's been horribly hard for me), I have a much better time with an actual teacher who is actually willing to help answer questions, (even though I do have a teacher currently who has been incredible). Back to the counselor thing- he was extremely condescending. "Well you let your application to the school expire so there's another road block you have" and "You're going to need to do the math accuplacer test, and not the english one, but honestly I'm putting a block on your account so you will need to take both because you've probably lost a lot of knowledge in the last 2 years that you've basically wasted."

Okay maybe that was a bit dramatic, but not much. He was awful and horrible and told me how many roadblocks I have in my way simply because I chose to wait. Well excuse me for surviving the worst kind of brain tumor you can be diagnosed with. But I'm not going to let it get in my way. I 'm going to try for fall. I am hoping to be able to have full learning abilities, because going from getting [almost] pure A's, to failing classes takes a blow on me mentally.

Whenever I get anxious, my lip goes numb. If you remember right, my lips were numb when the cancer was back and bad. I've realized in my life that God wants me to be at peace and he doesn't want us to get stressed out and anxious. So now I'm taking this as a little sign-- a "Rachel, quit being dumb" kind of a sing.

Honestly if I could erase one thing from this cancer journey and still have my miracle- I wouldn't. Everything not only played a key aspect in my healing but in my emotional, physical and spiritual growth. You go from being a State-athlete to three months later not being able to do a push up. So much was literally stripped from my body- but I have received so much in return.

So now with my life I am:
Trying to finish some online classes
Sewing a lot (Diane bought me a brand new sewing machine and it is beautiful)
Working-tons
Writing in journals
Crafting

and whatever else I feel like.

I am trying my hardest to find my way back into a normal 19 year old's life, and I'm not going to lie and say it's been easy. It's been a real challenge. But I am hoping to start writing more and keeping y'all updated with what's going on and how I am healing in this journey that I have taken on.



I can do hard things!

Rach!

In the following pictures- please examine the regular size of my face, lack of acne and oh, an engaged girl! MY TWIN IS ENGAGED, and I'm so excited for her and also a little bitter, but mostly excited!!!


 It feels weird to be in the hospital because I only have to get a checkup once every three months now!!! AHHHHH!

18 comments:

  1. YAY RACHEL!!! I am so happy about your miracle. DIPG is the biggest a-hole on the planet and you have defied it. And if that jerk counselor that made you feel bad happens to read this, I want him to know that I am holding up my middle finger to the screen, just for him. :)

    Keep kicking butt. You are a special girl.

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  2. This is amazing! God is real!

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  3. Wow that counselor is a piece of work....
    Moving on to a much more important topic - You!! So very glad you are able to work on being normal 19 and thank you so much for the update!!!
    My 19 yr old Abigail will finish up her radiation treatment tomorrow.... When you stated all of this we had never heard of dipg... Now a few years later here we are walking the same path. Having your words and experiences here to look back on have been a blessing. Thank you!! Continued support and prayers are with you as you continue To Do Hard Things!!!
    Best wishes to twin sis too!!

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  4. I'm so very happy for you! God's miracles are out there happening all the time. I'm so glad one came for you. :-)

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  5. Thank you. I love seeing an update. Although we have never met I have been following your journey and I cannot stop smiling now that I know how well you are doing. Good luck with your blossoming future!

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  6. Truely a miracle! I'M SO glad you're doing well! God is Good!

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  7. I'm amazed by ur stories, I can't believe some of the things that you have gone through sounds just like what my daughter has gone through. She was diagnosed august 9th 2013 with DIPG. We went to st.jude they told us that they had nothing left for us and took her off the chemo she was on. That was in June 2014, since then we have tried everything u can think of and went to different doctors and nothing seems to work. In September she went into the hospital and had to have an emergency surgery to have a shunt put in and they told us then that she probably wouldn't even come out of surgery bc her tumor has grown half the size it was when she first got diagnosed. So after she made it after surgery they asked if we wanted to try another chemo, so we did well after a month or so it wasn't working bc she got worse, she lost her mobility to walk, her left side and couldn't talk or even smile. The sad thing was her nickname is smiley bc that's all she did before. So in October are doctor put an email out to doctors that might be able to help us. So a doctor that has been working on this tumor for 25yrs and he just came here about 10 months ago before we met him. He came from Europe. He heard our story and he wanted to give it another shot. So we started going to him and he didn't sugar coat anything and said this is something they just haven't been able to cure or figure out. So she just kept slipping away. He came up with a plan for her to have a 2nd round of radiation and start different chemos that they haven't used with this type of tumor. Well on her first day of her getting her chemo she started having seizure symptoms within 10 mins of them starting it. So they stopped it and rushed her to picu trying to figure out what happened. Well we think it was the shunt stop working but the doctors said no that it was the tumor taking over and was sending us home with hospices and said she probably won't make it through the week. Well the next day she was back to the way she was before the day of going to get her chemo. Well the doctors were
    shocked. We noticed that her shunt got infected and they put her on a high dose of anobotics and said she had to stay in the hospital for about a week. So we did but they said that the infection probably won't clear up without having a shunt replace and the way she was doing they didn't think it would be a good idea to put her through a surgery. Well they sent us home a week later with a prescription antibiotic to continue her on to help with the shunt but in the meantime they wouldn't continue with the plan of chemo or radiation. So thankfully the infection cleared up. She got to start chemo and believe it or not she improve that they did the 2nd round of radiation. She had that for only 2 weeks. They said that the 2nd round of radiation was to help with some symptoms improvement and pro long her quality of life for a short period of time. Well it's 2 months later and the tumor has shrunk half the size and she is able to talk use her hands, moves her legs but still can't walk but I think when we get her weight back down she will be able to. The doctors are amazed on her process. They really haven't seen the tumor shrink this much and this much improvement after the 2nd round of radiation. Well now telling you my whole story, which I hope was ok but now I guess u can see why reading ur story gives us so much more hope. I'm still amazed by ur story. If it's ok I would like to keep in touch with you. If there is anything that you can share with me, I'm very open to listen. Thanks for sharing your story, don't ever feel bad about being successful and still alive through this. U are a miracle and u give many other families hope. I'm kinda of confused though on something. So do you still have the tumor? Is it not cancer? If you want u can look me up on fb Virginia turk Corbin.

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  8. Yay!! I LOVE your updates and I am so happy that you are feeling better!!

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  9. I've been waiting for this post so long! I'm so happy for you! keep on going girl.You are amazing

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  10. I also have been waiting for this post! Congratulations Rachel!! Good for you, keep fighting, and we will all keep praying :) You CAN and will continue to do hard things... we believe in you! God is good!!! many hugs from Iowa, Jayme Beyer

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  11. So happy to see you blog....you are an inspiration to many....keep doing hard things Rachel...prayers from Idaho...your always in our thoughts...!

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  12. Keeping your name where is belongs.... lets keep it going.

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  13. What an awesome update!! I wish I was there to give you a big hug. You'll just have to have a cyber one from me.
    As for the counselor, what a jerk! I'd like to say a few choice things to him!
    Love Ya tons!!!

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  15. Whaaaaat Jordyn's engaged?? Time for some prime Facebook stalking...
    And your hair is beautiful :)

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  17. I hear you saying the words that "I am so grateful" but it also sounds like you are bitter and angry about many things. Pretending you are fine with everything and telling yourself you are grateful does not make a person actually feel gratitude. If I were in your shoes I would be pretty angry too watching my twin get married and still living with cancer. There are many children diagnosed with DIPG who do not experience a fraction of the positive things you have, which makes me wonder if your tumor has been misdiagnosed? Is it a PNET or are they still going with DIPG? If this is DIPG it is a miracle that you are still here and functioning as well as you are, and that really is cause for some true gratitude. But, I imagine that is not easy in your shoes. Just don't pretend and allow yourself to actually be and feel what is truly there. Maybe find someone to talk to. Oh and if that college counselor actually said "you have wasted the last 2 years" after you told him you have cancer, you need to be filing a complaint to the school. Not sure if he actually said that or you interpreted that from the conversation as you said that is what he "basically" said. He either said those words, which are highly unprofessional, or he did not. If he did something should be done about it.

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