Wednesday, April 30, 2014

End of an Era

Today marks a significant day in my calendar. Today I finished number 10/10 radiation treatments to my brain. Even though today-my brain not be exactly in the stage that it’s appreciated the most and definitely hasn’t cooperated the way I had wished- I have completed traditional treatments. Treatments consisting of:

 HUNDREDS of doses of chemotherapy (that daily oral stuff along with everything else really adds up),


67 doses of radiation:

30 to the head

27 to the back

10 to the head again

I have been on four kinds of chemotherapy (2 oral, 2 interveinous)

Crenolanib (clinical trial at st jude)

Temodar (2nd oral kind)

Avastin (used simultaneously with…)

Irinotecan (SATAN)

Remember my crazy days when each post was zittier than the last? (my computer keeps telling me that zittier isn’t a word, but if you have ever dealt with acne you know that it is and agree with me on the mutual argument that despite the red squiggly lines, zittier is in fact a word).

Back to my point (I’d like to blame my sporadic thoughts on the brain tumor, but that’s just a quality that came with the body- no refunds, no exchanges)! But that crazy time when I was on dexamethasone and all Hell broke loose. When I literally classified in the same category as those that thought the world was rapidly speeding to a crashing halt in 2012. (From different reasons aside zombies of course).

I have been thinking back on those days a lot this week, as those, along with these days are kind of  the alpha and omega of such a trying, but beautiful era.  I remember when I was on that dexamethasone, and “happy” pills- I was still incredibly unhappy. I told Diane “I want to be put into a medically induced coma, til radiation is all over,” and even asked my doctors (Dr. Tsui and Dr. Broniscer, remember)? If that would be a possibility (don’t judge).

I felt hell every day. Even worse, I felt as though that hell would be one to persist forever. And for a while I felt as if it had. And even now I sometimes feel like it has. Mostly when I’m sitting around thinking and feeling sorry for myself. But either way, there are times (minimal) when I feel that way, even now. But for the most part I am happy and grateful for my life. Even the cancer.

My Heavenly Father has helped me escape that hell. And even though I still have those cancerous cells, bigger than ever, and tangling themselves to the consideration of diffused, I have escaped the hell I previously have been in tat tries claiming permanent residency.

I’ve been pretty emotional thinking about how this era is coming to a halt as of recent. Because unlike when I was at St. Jude and wanted to be in a coma and come through the whole process asleep, I look back on it and think “wow”. It’d be a pretty disturbing thing to say that I don’t want it to end. But I’d be lying if I said I was happy that it’s over.

It’s probably far from over, I just see it that way because with the knowledge I have, I am finished with chemotherapy and radiation.

If you have cancer, you know what the 0-10 scale is. It classifies your pain level 0 is no pain and 10 is basically dying. They have you rate what kind of pain you're in, and depending on your level of discomfort, I'm guessing, they have a certain point where they like to medicate you or find some other sort of alleviation for it. I like to think I have a high tolerance for pain, but probably don’t, compared to others.

I kind of like using the same scale, but instead of using it for pain, I use it to internally determine my level of happiness.

I am working on some other non-traditional treatment but I have chosen to keep that separate from my blog.  But when I was talking to my radiation Dr. today he attributed the success that we’ve seen as of recent to the alternative treatment. Which excites me a by a large factor on that happiness scale. I’d rate that a 1, (10 is miserable).

 Remember how my fingers are kind of numb? And I had to kind of re learn how to use my hands together to play the piano? Well I've been working really hard and am playing Clair de Lune at a piano recital coming up! 

I’m grateful that God has found it beneficial to keep me around here for a while.

So my life is still happening. Even though I’m about 12 months overdue. I’m trying hard, and I’m going strong.

So to celebrate my finishing treatment, a few hours after I finished treatment #10,  I got in the car with Jordyn, Diane and 2 of my friends and drove to California! We are almost there, I am excited to go to Disneyland tomorrow!
Driving to California.

My scar on my stomach is healing so good, and so is the one on my head! The hair is growing back in so fast!

From the Book of Mormon when I was reading the other day – “ Now, this restoration shall come to all, both old and young, both bond and free, both male and female, both the wicked and the righteous; and even there shall not so much as a hair of their heads be lost but everything shall be restored to its perfect frame, as it is now, or in the body, and shall be brought and be arraigned before the bar of Christ the Son, and God the Father, and the Holy Spirit, which is one Eternal God, to be judged according to their works, whether they be good or whether they be evil.
That entire verse excites me, but especially the part about hair. Not that I’m in any sort of hurry.
I can do hard things.


  1. CONGRATULATIONS!!! We love your free spirit and positive attitude. You are such a wonderful example to us all. Have fun at Disneyland! Love you Each ~M

  2. This is probably my favorite post you have ever done each. I love it. you look amazing. You are so strong and my best friend ever in the world. I am so proud of you sweetie and I think I may still be logged in as you... but I don't know how to change that. but this is Jane. :)

  3. Dear Rachel,
    I am following your story from Cologne, Germany. I often check for news about you because I love the way you share your fate, your thoughts and your feelings.
    In the last couple of years many persons around me got cancer and I watched them struggle with it. If I ever have to cope with that too, I wish for this amazing positive attitude you have.
    You are truly a believer. I envy that and you teach me more about this knowledge with every chapter of your story.

    Basically I wanted you to know, that there is somebody right across the ocean who thinks of you, feels with you. I want to read many more entries, so "Halte durch!", as we in Germany say.


  4. Congratulations! I know it takes guts to go through what you've been through. You continue to amaze me, a stranger that just happened onto your site by accident way back when you started it. Have a great road trip to Disney Land and eat one of those honey comb treats for me! I will continue to pray for you from Texas...

  5. I'm so happy to read that your done with the radiation to your head and that you get to go to Disneyland! Have fun and say hi to Mickey and Minnie Mouse for all your blog readers! :)

  6. Sounds like you will have lots of fun at Disneyland with Jordyn, Mom Diane and your two buddies. Also, glad that round ten is finished. Still thinking about and sending positive thoughts and prayers from NYC.

  7. Hi Rachel, My wife and I have been following your blog for quite some time now. We are always so happy when you update it because it means to me that you are okay. I worry about you and pray for you. You are an amazing young lady, your struggle and attitude are inspirational and I hope only the best for you. Enjoy your trip to Disneyland, God Bless :)

  8. excellent paintings , i have visited your website for the primary time. thank you very lots for having this type of informative weblog! i am so pleased with you sweetie and i assume I'm working in I may additionally nonetheless be logged in as you,but I do not know a way to change that.