Saturday, September 8, 2012

Brutal Honesty:(

This is going to be my honest post. I apologize in advance, PLEASE NO ONE BE OFFENDED.

Beforehand I'd like everyone to know how much I appreciate the support. Having said this, This may be my only blog for the weekend, because honestly, I know I've said things were overwhelming right now, but with my medications and everything else, things are way too stressful. Stressful enough, I can't stop my thoughts to fall asleep at night because of the dexamethason.

"Cancer is a word, not a sentence." -John Diamond. Although I appreciate and encourage the support so much. EVERYONE of us is going to die. Who knows if cancer is what will take my life? In this world, and in reality, whoever reading this could die in a second. Don't let this depress you. But people are suffering just as much, more, and less than I am every day. I recognize that, because most of the time I worry more about how others are dealing with this situation than I am. I know at the end of the day that this is temporary, and everyday is unpredictable and to live in the moment- I just wish I could live without thinking "I have cancer" 24/7. Obviously my mom and I are dealing with everything physical, taking one breath at a time, and staying strong through the roughest of times, but it is HARD.

Emotionally- I've never dealt with anything this hard in my life, and I know right now this is from my steroid. I'm trying to get my thoughts under control. I know I can do anything physically. I do not know what may happen. But right now my emotions are out of control. Happy, Hopeful, Sad, Depressed, Angry, Numb, etc. This is my biggest trial right now. I just don't want any pity.

Physically- I have not been in a lot of pain other that leg aches, back aches but that is due to the dexamethason.  We really don't know at this point if or what pain there will be.  I do have what I call numb but it is really a tingling sensation that is in the mouth area, my tongue, my left hand and up my arm.  Staying on top of my medication is a full time job.  I was recently given a medication to help with the nerve tingling but it only increased the already bad reactions from the steroids so I won't take that again, even if I wanted to Diane would not let me, enough said.   I hate complaining about my symptoms, but I do anyways. Here we go, my face is really numb, zitty, and puffy. I've lost some hearing in my left ear.  My left arm and hand is tingly. But I feel as if I have no physical restrictions at this time.

Spiritually- so much has happened to me. At this time I feel it's not appropriate to record everything I've learn, I'm not trying to hide any secret to life you might think I've gained through this experience, It is just very personal. (AGAIN- NO ONE TAKE OFFENSE, this is just MY opinion, and what I believe) But I do want to everyone to know, as real as God  is, SO IS SATAN. Anytime something good and wonderful feels like it's happening, Satan shows up with discouragement and fear.  Life for me is about learning to control that.

What you guys can do for me- Stop worrying. We're all doing the best we can. Life goes on. I need to keep living my life. After all, I'm still a 17 year old girl. I want more than anything for this cancer to stop defining me. REMEMBER IN THE BEGINNING WHEN I SAID FOR NO ONE TO GET OFFENDED, NOW IS THE TIME TO APPLY MY REQUEST.  No more "how are you doing?" questions. It's as if everyone is trying to tell me how much they love me like I will not wake up in the morning. Right now I'm not living each day as if it's my last. Because as for now I feel it's not.  I have everything to live for.

Things I have found to help (THIS IS NOT A HINT TO SEND ME ANYTHING- PLEASE NO IDEAS FROM THIS)
I have So many books, quotes and inspirational things to read.
I still sing (although poorly now)
Piano here (even though I can't play as well)
Screaming
Crying
Writing
Hugs
Thinking and talking (when I'm not out of my mind) to my family.

I will end with the word balance.  I have a hard time balancing while standing on one foot (something they make me do for almost every appointment I have).  What they don't know is that I haven't ever had great balance so they think that it is from the tumor but those who know me really know that I have never walked in a straight line or been very graceful.  I am now trying to balance the life of a normal 17 year old girl with a person who has cancer.  I am doing everything I can to fight the tumor by being here at St Jude so now I want to get back to being me but as you know I am not so graceful.

I can do hard things.
Rachel

24 comments:

  1. you've always been honest so it's important that you still say what you feel, as you have always done. love you love you love you all the same.
    (brother! Sister!? im all alone!...)

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  2. Thanks for your honesty Rachel ;) You're awesome.

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  3. Don't apologize for being honest. You are in a unique situation with so many learning experiences. I kind your thoughts fascinating as you travel this journey. I continue to pray for you during each step. I try to be specific and your honesty helps me pray for those specific things you need right now. You just keep fighting!

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  4. Rachel,

    My husband and I were involved with the Pediatric Brain Tumor Foundation Ride for Kids (http://www.pbtfus.org) for several years. Reach out to them. They help families with children with brain tumors. You are a beautiful and honest young lady. You deserve all the best! I'll be praying for your.

    Ildiko

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  5. Last night as I lay in bed, my mind too busy to sleep, I found myself thinking of one of my favorite quotes:

    "Just as doubt, despair, and desensitization go together, so do faith, hope, and charity. The latter, however, must be carefully and constantly nurtured, whereas despair, like dandelions, needs so little encouragement to sprout and spread." Neal A. Maxwell

    Your description of how you are doing spiritually brought this quote to my mind again, so I thought I'd share. If you aren't in the mood for quotes right now save it for later. Just know that you are loved and prayed for daily.

    Thank you for continuing to share your thoughts and journey with us.

    Love,
    Jaimi

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  6. you're absolutely right. I'm grateful for your honesty. we are all ourselves and we can put labels on everything, right? we could all say I'm this age and I struggle/am fighting blank. seriously. all of us. you are just becoming a hero by showing us all how to live with the things that really can't and shouldn't define us, but are put in our lives to help shape us. yes, you are awesome. hope you stop thinking and sleep tonight!

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  7. Thanks for this post! it's good to get that out :)

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  8. Hahaha my mom felt the same way!! "How are you doing? Oh my goodness I'm so sorry. It must be so hard." Drive her crazy! Cuz NO DUH it's hard and I'm clearly not doing well! Is what she said. People that have never dealt with it or something similar don't understand or know what to say. It's their way of trying to help the best they can. I love you! I'm sad i don't get to see youat homecoming!!!

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  9. Just like with a family or friend member passing or other hard things in life people need to feel like things can be normal. People need to feel like things arnt different. Yes, you feel different and different things are happening, but you need those people in your life to treat you normal so it helps with the things that have changed. You shouldnt feel bad for being honest and truthful. We are here reading this to see what you are going through and see how you are doing day to day. People need to see the good and bad days because if everything was peachy then it wouldnt be truthful.

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    1. family member or friend

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  10. Rach you're the best. I love the honesty. It helps us to see what it is like for you day to day. You are right, everyone is battling something. Thank you for letting us share the journey with you.
    You are and will still yet do great things, with or without cancer, and/or all the other things you will face in this life. I think you are just that great. Love you!
    SIS T. /mama llama

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  11. Rachel,
    You are a beautiful writer! Your words are clear and true, and solid! I loved reading that! I hope you will write more like that. Please don't worry about offending anyone. You are letting us into your life, and that is such a huge gift in and of itself! No one has a right to be offended at someone else's truth. SO glad you shared it! We love you!
    Erin and Joseph

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  12. I don't pity you, I am humbled by you. I am 10yrs older than you and I follow your blog because of all that I FEEL when I read it. I can feel the spirit somehow when I read it and that is a comforting kind of addiction I guess you can say :) I hope you have a restful sabbath tomorrow... P.s your mom sounds great!

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  13. Rachel,

    I just want to say that you are so brave to share this experience with the world. It can not be easy. No one knows "how to have cancer", it isn't a book you read or a class you take in school. I think you are doing an amazing job at keeping your spirits up, but it is ok if you don't. I am sure that your friends and family don't expect you to. Just remember that you made it through yesterday, so you will make it through today. And don't worry about tomorrow, it will be here soon enough and you will conquer it like the super, fabulous, brave girl that you are. Many prayers for peace and comfort are coming your way from me.
    ~Sarah from Texas

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  14. Rachel you sweet girl love your blog made me laugh about not ever having great balance. I'm glad you were able to sing good once because when i sing your mom would say turn the radio louder please. Would benadryl help you sleep? What do the experts say? If we were closer I would let you play with our thirteen week old Basset hound Oscar. He wears me totally out and then maybe you could sleep or just hold him and let him sleep. Hang in there . You are strong. Lots of love. The Oakmans

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  15. Rachel - for someone who has been thrust in the spotlight - not of your own choosing - I think you're doing a da** fine job. (Swearing a lot is a side effect of cancer - sorry.)

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  16. Rachel, thank you for being so honest! I laughed out loud about you not being able to balance, I guess it made me think of my daughter who falls up the steps every other time she runs upstairs...our family just yells out "4th Step!!!" when we hear her trip, and then we all laugh! I'm sorry that things are so magnified right now, due to the medications. I hate that feeling of wanting to sleep, and not being able to turn off the flood of thoughts going through your head.
    Hang in there cute girl...and I say go ahead and roll your eyes at the next appointment, when they ask you to balance on one foot, then look at your mom and smile!

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  17. Duh, girl! You have the big C! You have a tumor in your brain and your body is full of meds. Guess you are probably experiencing all kinds of things most of us don't understand and we are just lucky you are willing to share things so personal. No apologies necessary. Jeff was on steroids for several months (PMR--look that up!) and they made him a little crazy without having cancer. I enjoy your blog and am amazed at how strong you are and your great attitude--and how mature emotionally. When you get older like me, you really realize the truth of "all of us are going to die."
    We just don't feel as vulnerable, though we may be. Live with NO regrets and the fullest you can. You are truly amazing and I know GOD LOVES YOU. Being a mom, my heart hurts for your family as they watch you struggle. I know your parents would do this for you if they could. Our prayers are with all who love you as well as you.

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  18. My whole youth group prayed for you!! hope you are doing okay and beat this thing :) stay positive and know that god is on your side! :)

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  19. My little sis got diagnosed w/stage 4 breast cancer last year. It sounds like you've both learned similar lessons of faith, discouragement, physical limits, and have looked into death's eyes with uncertainty as well as hope. She has also been overwhelmed by advice & books b/c everyone wants to help & cure you. Follow your own heart & know that this is what God wants for you, so don't fight it--embrace it! Enjoy seeing, as my sister does, how many people reach out to you & your family, and feel their love & prayers. It is truly a blessing to be loved by so many friends, family, & even strangers like me. Good luck in your journey Rachel! You are a valiant spirit indeed! -Lindsay from SLC

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    1. BTW, I heard about your journey on CuteGirlsHairstyles from Mindy's cute little girl. You could feel the love pouring out of YouTube!

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  20. Oh, So wise little one ♥. Having been in a very dark place a few years ago It strikes me how refining yet similar the growth and lessons while each journey incredibly different. I'm grateful for my journey. I couldn't have learned the same from yours. today you have shown ME that the Lord does have an individual Plan for each of us.God bless you with more peace and strength sweet girl.thank you for this gift ♡

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