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.

Sunday, April 20, 2014

Easter/My Birthday

Today is my birthday!
This year it fell on the same day as Easter!
So I want to thank my Brother today, for making my life easier. For dying for me so that I can live again. For making cancer a little less scary. 

Recently I have got surgery, I had to get a shunt put in my brain . Oh and I started radiation again, so I guess you could say I've been pretty productive.
I have a pretty hard time feeling much of anything with the exception of symptoms from the cancer.

That's really all I have to say today.


Sunday, April 6, 2014

I Am Grateful

"You have 9 months to live" is pretty scary, especially when you pass that 9 month allotment and realize that as smart as your doctors may be, it will ALWAYS come down to God's will and you have to start planning for your life!
And for those of you who are wondering:
All my life I have wanted pretty consistent ideas for my future.
I wanted to be a Sports Medicine Physical Therapist, then I wanted to be a Neurologist. Then I got diagnosed with cancer and I don't want to do that at all anymore! I don't want to feel empathy for others in this situation, (as awful as that sounds). I never want to see ANYBODY experiencing what I have. So I've thought about it lots lately, and think I have decided to become: a motivational speaker. I love talking to people and I am comfortable with who I am and how I have handled my situation- people find it fascinating. So that is my current goal!

My church does this cool thing twice a year- where all of the head leaders of the church stand up and not only give us direction, but bear their strong and powerful testimonies. It's amazing. Very spiritual.
This year I had the opportunity to bear my testimony through song at that meeting. I sang in the choir and it was incredible. I will post pictures. And a link.

I have a story for you;
When Jordyn and I were little, we used to play on the swing set in the back yard a lot. One day, Jordyn was on the yellow swinging bar trapped by her own two hands. Needless to say, Diane got an amazing picture of her, wedgie and all.
(That story will resurface)

My favorite speaker in general conference (President Uchtdorf), talked about being grateful. I love and agree with his words completely.

They gave me 9 months to live, but guess what? I'm almost to 20. And like President Uchtdorf said, I may not be at peace with God's will, but I have learned to accept it. I know that whatever my Heavenly Father has in store for me, is the most effective way for me to learn and grow eternally.
I am not saying that I'm giving up! There will be a fight before I do that! But I am saying I am finally allowing myself to struggle.
And just like Jordyn-helpless and alone on the swing set, I feel alone too sometimes. And I have realized that just like it was her own hands trapping her from happiness, sometimes it metaphorically is my hands trapping myself. With God, I realize that my hands don't have to be white-knuckling the yellow bar. Because my God allows me to be grateful. He will always be the ground right underneath my feet to stabilize me. Just like the ground, only inches beneath Jordyn.

Moving on.

Right now my friend Jane and I are trying to start our very own clothing company called   Mindless.  We will donates some proceeds to the cureSearch foundation which donates 100% of proceeds to cancer families. It is mostly centered around the brain and I bet you can guess why!

We are doing an Easter egg hunt and are really excited to hopefully start going somewhere with it!
Contact me with any registration or donation questions!

I am going to have an MRI soon, but I haven't told anybody besides my family because the stress scares me! I don't want any questions about it! I have chosen to keep it a secret so as not to stress me out any more. I am more excited for this time though (as opposed to every other time), because I finally got them to sedate me so I'm not on my back on the hard table, stuck in a tube for 4 hours- AWAKE. Which is literally how long it takes.

I'm so grateful that even though what I am going through is hard and miserable, that I can find things to be happy about, to laugh over, and to appreciate.

I'll be updating real soon!
I can do hard things!
Oh and I died and cut my hair, have I mentioned that yet!?

A snapchat I received!

Look it's me!

Selfie in the Conference Center!

Congrats Miss Cassidy Mella

All aboard the Carson Express! (friend from St. Jude with brain tumor)

Me and my friend Mariane!

Me and my friend Charmaine! 

I am thankful for all of my friends and for my family and for my religion. I am grateful for my body and my knowledge. I am grateful that despite everything I have been through, I can feel grateful.