Monday, August 11, 2014

2 year cancerversary

Last Saturday I celebrated my 2 year cancerversary! I can't believe it's been two years since I started this journey, and I've learned so much from it. I was thinking about it yesterday and came to the conclusion that:

APPRECIATION COMES FROM DISCOMFORT.

I've learned so much, but especially how to appreciate things. I really believe what I wrote above. I also believe that it's important to appreciate things, even when you aren't particularly comfortable. I keep thinking about when (eventually) I die. I do believe in an afterlife. But I keep wondering (because "they" say it's so amazing), what it is in heaven. Is everything really more beautiful and incredible, or is our capability to appreciate more beautiful and incredible? Those are the things I like to wonder about when we go to heaven, instead of all the other things. That's the reason when anybody has asked me if I'm scared through this whole experience, my answer is "no". Why worry about the things we don't have to?

Anyways, I am so appreciative of all the support I've gotten through this whole thing. I am so thankful that I am so healthy right now. And I'm especially grateful that this trial has opened my eyes to see beauty in everything. (Well almost everything, I'll probably always hate hiking, but the mountains are beautiful).

I can do hard things!

Rachel

Sunday, July 20, 2014

Learning to Live

Today is July 20th and it also marks one more day in my calendar of life, and in 20 short days it will be the 9th of August, which also marks my 2 year cancerversary.  Almost two years I was given nine months to live, and I am so incredibly grateful that I'm still here.
So I had my regular appointment back in April (when I wasn't doing very well), and every appointment since has been so good. Every appointment since has been very interesting because not only have I learned that back at my April appointment they were going to put me on hospice, but that they didn't expect me to live for one week. Didn't know I was doing so horribly, did ya?
Really the only reason that I'm still alive is because (what I believe at least), is my faith in God, and the alternative treatment I have been doing since January.
I feel like the luckiest girl alive. I have been so blessed. I literally have 0 symptoms still, and the next MRI that was supposed to be done at the beginning of this month, is now "up to me" if I even want to do one.
Even one of my Dr.'s who was very skeptical about the whole thing, and let's face it, probably very forlorn, has been acting very hopeful lately. She even said at one of my last appointments, "well I do believe in miracles."
Even one of my Memphis Dr.'s was on the phone with my mom and bluntly told her, "Diane, she has a stage 4 brain stem glioma," as if to change her optimism into realism.
Honestly if I had to do it all over again with the knowledge that I have now, I wouldn't do any of this western medicine nonsense. I am definitely not against any of it, and if I wouldn't have had that back surgery I'd be dead, but besides that it never did me any good.
I was on 4 different types of chemotherapy and not one of them worked. (Understanding that every cancer is different but DIPG is an incurable, inoperable and altogether really crappy).  I did three different rounds of radiation (that only shrunk it for a while, making it grow back with a vengeance). I've had three different surgeries, and the worst of it all: was on high doses of dexamethasone for (what felt like forever), but was just over 2 months.

What I did gain from all of this was:
An appreciation for people with cancer, and other serious health problems.
An appreciation for people who have depression or mental issues.
An appreciation for people in the field of health and medicine.
An appreciation that everybody has a life with a purpose.
An understanding that life isn't only rainbows.
A higher pain tolerance.
A better attitude.
A happiness to bloom where I am planted.
A realization that psychologists and psychiatrists aren't a bad thing.
A broadening of my perspective of the world.

So I guess if I had to take it all back, I wouldn't because I'd be giving up too much, but I wouldn't spend so much time wondering and wishing for something that I didn't know was in God's plan for me.

I helped a stranger with something this week and she told me "You have an incredible brain."
At first I thought to myself "little does she know." But then I realized that everybody, cancer or not, has an incredible brain.
Because of having brain cancer I've realized how wonderful the brain is and how much it does and controls. I think about it all the time. I think about how intricate it is, and how even the smartest people can't understand exactly how it works. And then it brings me to the other thought about the creation, (because obviously you think about those things when someone tells you that you have nine months to live), and I think about believing in a God and how unrealistic that can seem to some people. But when I think about the brain, the thought of having a God is all too believable to me.
What I don't understand is how something as complex as the brain could be explained by a massive collision. I do understand that was probably the creation of the earth, but I don't believe that seriously, with the intricacy of our brains, that there is no God.  I can't believe that because of the things I've been through and the experiences I have had.
I also realize that some people don't believe, and that other people believe in different things and different God's and even multiple God's. And even though I believe completely in my religion, I think that is wonderful. I think that believing in something is incredible. I love believing in something, (someone). I love believing in an idea that is so real to me, and that I've invested great amounts of faith in. I love and respect that other people believe in other things they have invested their faith into. I love having faith and believing in something that makes all of the bad things in my life A LOT less scary. I am grateful that I have such a loving God.

Anyways, I'm going to stop ranting and be done.
But there it is.
((I can do hard things) always implied).
Rach



I still have to have my port flushed once a month.
 But I like to do it by myself.
 Next to my Dr.

Sunday, June 29, 2014

Recovery

I know I haven't posted in a while, and I guess it's because I haven't felt like it. But I realize there's a difference between not feeling like doing something and not feeling up to doing something. Since I've been feeling up to doing something lately, I need to be grateful and run with it, so here I go.

Everything is getting so much better. My life is starting to feel somewhat more normal, mainly because I'm not getting something foreign surgically lodged under my skin, throwing up, sleeping 20 hours daily, tingling up my fingers and on my tongue, or seeing 4 of something singular.

I'm enjoying all the fun pointless things I've gotten to do for the last few months because of my health. But now that things are looking up for me, it's time for me to try and start living normally! So I am starting a new job tomorrow and am looking forward to having some sort of a responsibility aside from 3+ Dr.'s appointments weekly.

I'm still on the same diet that I've been on since around January:
No preservatives
No msg
No gmo
No white/enriched flour
No red meat
No artificial colors/flavors
No sugar

The other day me and my mom were shopping when she picked one of my old favorite treats up and then put it back down, feeling bad that unlike her, I couldn't eat it. So Diane naturally apologized and I realized that life is sweeter than any treat that I could eat. I am so grateful that unlike my diagnosis, I continue to keep- not only living- but enjoying the life I live.

I keep a gratitude journal where every day I write one page of one thing I am grateful for and why. It has been what has helped me through this time that was starting to look scary before it began looking amazing.
It's so interesting to me that beforehand I have tried keeping a gratitude journal and writing a page full of things I am thankful for and have massively failed. But when I focus on something- just one thing- every day that I love and have a tremendous amount of gratitude for, I am not only able to keep the journal-ing consistent, day by day, but that I am beginning to believe what I have to live for and feel happier.

I have been through a lot of pain this year alone. In January and April I had surgeries that were putting foreign objects into my body, lots of chemo, some radiation, and a lot of hair loss, headaches, heartbreaks and nausea. I remember the January (port placement) surgery, when I first got home from the hospital I looked at myself in the mirror and remember feeling nauseated. Now I know a lot of people have bigger problems and that they're way more cut up than me- but that's besides the point. I saw what I claim is my third boob (the port in my chest), and just felt sick. I remember how red the scar above it was, wiggling it back and forth beneath my skin and the way the three bumps irritated my fingertips.
It was so creepy to me and I could hardly breathe when I saw the tube going up my chest and into my neck where it disappeard into a vein, and then into my heart.
Three months later I found myself in a hospital bed again getting another foreign object lodged in a man made hole of my skull/brain with a visible tube to where my port is, which then disappears into my stomach, releasing spinal fluid. Because all normal brains need help draining their spinal fluid-not.
This time came with some radiation, a head shaving and some bald spots, but supposedly relieving me from a harsher life end than to be expected normally. ((Even though bumping "the button" for too long could cause violent vomiting, severe headaches, and even cause a coma that can lead to death), and people wonder why I am irrational when they are close to, or even seem a threat to my head).

I have a hard time sharing my success to people that also have cancer, especially my same kind. I think it was because my friend Savannah (the one with leukemia from St. Jude) didn't tell me when she went into remission. And when I finally figured it out, I asked her why she didn't tell me about it, and she told me she didn't want to brag. (She's amazing). But at that point I realized that whenever I saw any success at all- even in the times I didn't care to see any- that there were many other who weren't seeing that same success and that I need to feel grateful, instead of throwing myself the usual pity party (which usually included peanut butter m&m's until I stopped eating sugar).

What I'm getting to is my success. I have experienced a lot. I have been extremely blessed and I am very happy that my life has not been ruined because I chose to look at one bad thing instead of looking at the million other-maybe smaller-things that were going good for me and that I have been blessed with.

I went on two runs this last week. It was only to the end of the street and around the church, but I went on two runs this week. RUNS! I haven't enjoyed exercise since diagnosis- to understate the matter. But I am starting to enjoy things that I used to love again! I may not be able to run a 59 second 400 meter or a 20 minute 5k anymore, but I can run, and I can see straight, and not limp, and I am grateful for that.

My new job is in a city about 20 minutes away from, so it's a good thing that my eyes have corrected so that I can safely commute.
My fingers are in amazing shape, and not only can I type this up quickly, but I can also play the piano accurately.
I got to go to the Manti Pageant yesterday and I didn't need to be wheeled in my wheel chair for 1 second of the entire thing because I have strength, and can walk straight.
My life has gotten so much better, I am more positive, I am healthier, I am kinder, I am more productive, and I am enjoying things that the cancer-free Rachel enjoys.

I am so grateful for all the prayers that have been offered in my behalf, and I'm so thankful that so many people believe in such an amazing, mysterious, and healing Father in Heaven and are helping to bless me through it.
I am grateful I have a religion (LDS), and a family from those who also believe either in my religion, or outside of it.
Thank you
I can do hard things
Rach

As always- some pictures.