Thursday, October 9, 2014

Movin from Memphis

Today I am particularly grateful, and that's because two years ago from today I moved home from Memphis. I am thankful that I have been home and around this long, it seems crazy that about 110 weeks ago, I thought I would only make it MAYBE 40 weeks. The time has gone by really fast and really slow, but what matters most is that the perpetual terrifying fear of dying- I no longer have. I also have been very blessed to have so many people- most of who I don't even know, pray for me.
I'm also really lucky because some of the best people I have ever talked to and am good friends with now, I have met through my blog. The expectation for this blog in the beginning was to keep all of my family and friends updated while I was going through treatment in Memphis, and I've been so blessed to have been prayed for in so many states, countries, and religions because of it.

Oh, and guess who got their port out! This girl! My doctors told me I don't need it anymore (when in April they told me I had to stop chemo but had to keep the port to be on hospice). It's crazy that I'm still alive because I had a nurse admit to me in June that in May she didn't think that I would make it a week from my April visit. So so so very blessed.

I've been thinking lately how fast time is going by. While I was in Memphis, time was still, and each minute felt like a 1/2 hour. I was miserable and depressed (dexamethasone, remember?) But I made it through! This year since August 9th, I hardly remember too much happening, I've been so busy, and time has gone by so fast, and I am so thankful for that because while I was in Memphis, I thought time would never be the same again.
I don't have too much else to say, besides thank you for the emails/comments that I still get frequently. I love to hear peoples story, where they're from and what led them to my blog, it fascinates me.

I can do hard things!

Rachel
ps
 LOOK HOW LONG MY HAIR IS!!!

Even my bald spot where the dr. shaved putting my shunt in is growing fast!
 Me getting my port out! I'm a great patient!

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.