Saturday, January 25, 2014

Frustrations

I had chemo yesterday and I have been a little bit nauseated, but I haven't even thrown up yet! Hooray!
This first picture is of me and my patient advocate who I adore, not only because she is 4'10", but because she is a very happy and kind person and her name is Louise.

This is my port getting accessed for the first time while I wasn't heavily medicated. Chemo Fridays!


When you are diagnosed with cancer, everybody thinks that is your trial. The truth is, I still have a life and all the drama and disappointments that come along with it. I just have cancer as my cherry on top, and that really puts a delay on life sometimes. I have as many dreams and aspirations as the next person, but I also have been told that I'm not going to make it. There's a semi big frustration, on par with hitting McDonalds at 10:31 AM, one minute after breakfast closes, and being told there's nothing you can do to get your sausage McMuffin and hash brown.
This last week, all of my finger tips went numb on my left hand, and my face is still just as numb. I feel so frustrated and helpless. When I was little I always thought parents, family, bishop, and doctors could solve all of my problems. It's scary to have a problem that nobody can solve, and that not even mommy can kiss better.  
Here's another annoying frustration to me (besides the fact that now I am much slower at typing, due to the numbness in my left hand). When people are insensitive. Nothing frustrates me more than a rude, careless, bull headed, insensitive and most likely insecure person.
This last week I was hanging out with my friends at a nearby place and friends had been bailing on me all day long (really not trying to sound like a drama queen, but it's definitely coming across that way). Nothing to me had seemed to be going right. (So Jr. High, right?). Anyways I was frustrated to the point where I left on foot and walked next door to the bowling alley where my brother and his friend happened to be. Also there, was my cousin because it was his birthday, and his friends. So I went and jumped on my cousin to be annoying and joke around like I always do. One of the people from his friend group, that I later found out was just a tag along, started a conversation with me and was being a little vicious. 
I don't know exactly how it got out of control, but it did. So I told him "Hey, you can't talk to me like that!" And what was his response? "Why not?" I told him "Because you shouldn't be talking to me like that." and he said "Why not?" (Obviously this is where I pull the cancer card and say....) "Because I have cancer!" 

This is where the situation gets almost disturbing, when he replies "Well you're half dead anyways cause you have cancer so it shouldn't matter to you anyways."

I'M HALF DEAD ANYWAYS? What kind of dreadfully awful individual would ever say a thing like that?
I definitely didn't sit there and take it politely, quite contrary actually. But people from my blog seem to think I'm some kind of hero, and I'd like to try and maintain that image.

He has a cancerous attitude and personality, and I felt sorry for myself, while in my bed for about the next 24 hours after that. But I realized, I should feel more sorry for him. I'm more alive than he might ever be. Yeah I have my quirks with people, but I also know how to genuinely appreciate someone, and that's more than he's ever learned in his 30+ years of overeating and bullying. (Uncalled for I know).

Here's the moral to my story. You might not have cancer, but it's easier than you think to catch a cancerous attitude. Learn to appreciate people while you have them, and despite their troubles, trials and worries. You'll never see exactly the same as somebody else, take it from an identical twin. But you can learn to see beauty in the way that others see things, and live their lives, and that's why we're here.

I know I've been complaining a lot recently, but I'm trying to display the raw honesty behind a life with my particular trial. The only way I know how to do it is through words and stories, so here ya go! Thanks for reading, supporting, praying, and commenting. I truly do appreciate it!
I can do hard things!
Rach

24 comments:

  1. Raw is good, Rach! And he deserves everything you gave him and more. Heroes can be real and it allows all of us to realize that coping with problems won't always be easy. Thank you for your continuing inspiration and for your fiesty spirit.

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  2. Wow what a jerk. You're the best though! I can't believe how awesome these entries are. Just started reading your blog and its super inspiring

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  3. Rachel: I just wanted you to know that I check your blog frequently. I really care about how you are doing. Some people will never understand what you are going through. I quite agree that there can be cancer in the soul of some people. It kills me that we as humans don't have the skills do solve this for you. How can this be that they haven't had any new treatment in over 30 years for some type of cancers. I do try to keep some hope though. I really do think it is o.k. to acknowledge how much this sucks. That is part of your story and staying true to your feelings. It kills me every time when I hear of another child is diagnosed with DIPG. I'm hopeful when I hear of new trials. Hang in there. Know you aren't alone in this trial. Perhaps by showing the good, the bad, and the ugly they will see that there needs to be more research for a cure. Sending lots of love your way!

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  4. I read your blog often and i must say that you are an inspiration for me. The most beautiful words:

    Here's the moral to my story. You might not have cancer, but it's easier than you think to catch a cancerous attitude. Learn to appreciate people while you have them, and despite their troubles, trials and worries. You'll never see exactly the same as somebody else, take it from an identical twin. But you can learn to see beauty in the way that others see things, and live their lives, and that's why we're here.

    I have copy/paste it so i can read it when i want.

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  5. Geez, sorry that happened Rachel. :( I love when you have time to blog. Praying for you!

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  6. WOW, WHAT AN HUMBLE AND GENEROUS PERSON YOU ARE. EVEN WHEN YOU ARE UPSET AND ARE BEING TREATED IN SUCH AN UNGRATEFUL MANNER, YOU STILL SEE GOOD IN THOSE WHO OFFEND YOU. TO AFTERWARDS FEEL A SENSE OF CONCERN AND HOPE IS TRULY A GIFT THAT MOST OF US ARE VERY LACKING IN. THANKS FOR HELPING ME SEE THAT EVEN IN TIMES OF DIFFICULTY ONE CAN STILL MAINTAIN THEIR RESPECT AND DIGNITY.

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  7. Your experience with that very rude individual makes me think of someone I know who is a quadriplegic. One day, he said to his parents that he was so grateful that his greatest trial was physical and not spiritual. He knew that someday, he would receive a perfect, healthy body, but when someone has spiritual handicap (or a cancerous attitude, as you put it), that requires so much more effort on the person's part to have it healed and made healthy.

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  8. You handled it perfectly! You demonstrated righteous indignation. I'm so proud of you my dear girl! Thank you. I love you

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  9. WOW what a horrible thing to say! You are right to feel sorry for him. He obviously needs a lot of prayer! I check your blog regularly and pray for you daily. God bless you!
    Bridget Michel

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  10. Hi Rachel, I had commented once before, but thought I'd repost in case it got lost in the shuffle. So here goes:
    I just sat down and read your whole blog in one sitting!! My 13-year-old nephew, Alex, was just diagnosed with DIPG before Christmas. We're all still reeling with this information and are trying to learn all we can about not only DIPG, but HOW to support my brother and sister-in-law, my nephew and also Alex's 2 younger brothers. Alex just started treatments last week and will also be participating in the St. Jude's Phase 1 trial via Children's Hospital here in St. Louis, Missouri.
    I will recommend your blog to my brother, Jeff (Alex's Dad). I'm sure he'll want to read about your journey and the inspiration you instill in others.
    Please, Like Alex's FB page, www.facebook.com/hopeforalex & post a message for him! He LOVES getting messages from others. If you'd like to get in direct contact with my brother, let me know. I don't know if that's a weird thing to ask, so just ignore me if it is. LOL!
    Thank you for your courage, inspiration, strength and joy. I *hate* that this has to be your journey - or ANYONE'S journey. But your approach to all of it is amazing. God has worked wonders through you.
    Many thanks,
    Jodi
    Alex's 'Aunt Jodi'

    P.S. - I am utterly and completely amazed by your grace, Rachel. I'm so sorry you had to endure that disgusting person. Good for you, for putting him in his place! ((HUGS))

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  11. Hey, has anyone congratulated you yet on receiving over half a million page views? That's a lot of lives you have touched!

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  12. I check in often and love to see new posts. I think you have an amazingly positive attitude. And you didn't deserve that kind of treatment. I'm sorry.

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  14. Hi Rachel-just stopping by to say that I pray for you every day. I happened upon a news story (complete with video) about you from February of last year. It was so nice to hear your sweet voice, and to hear you play the piano. You ARE an amazing young lady and I am so proud of you.
    Keep on being you-you are an inspiration to so many with your powerful attitude.
    Linda in Oregon

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  15. Way to be strong and rise above! You are a great example. Love this post!

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  17. Hi Rachel,
    I came across your blog back when you were first diagnosed and have been following your blog every since. I just wanted to say your spirit, attitude and courage is so unbelievably inspirational.
    You are such a special person rach and have touched more lives than you'll ever know. Congrats on reaching half a million views.
    Sending you lots of love and prayers all the way from Australia x

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  18. Hi Rachel,

    I've been following your blog for a while but don't think I've ever commented. I think you are one of the most alive people I have ever come across. Your attitude is something we should all strive for. And the poor guy that said those horrible words to you, he surely has a sad life! Keeping you in my thoughts often and sending healing prayers.

    Brooke

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  19. "I'd like to try and maintain that image" hahaha I laughed so hard! I love you. This is Lauren FYI

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  20. rach,
    i dont know you and you dont know me but i came across your link from cutegirlhairstyles on instagram and decided to check it out. let me start off by saying your an inspiration in your fight. i just only two weeks ago lost my grandfather who was ripped away from me by cancer as well. keep fighting and stay strong. your right, you probably have more life in you than most of us fully healthy individuals walking around. so many people dont realize the true importance of life until they are faced with a life changing situation. you should be proud. no matter how hard you struggle keep your head up and keep moving forward! dont let anyone bring you down. my prayers are with you and your family :)

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  24. Having a good attitude is going to help you fight and stay alive! I will pray for you daily!

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