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).

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


  1. Thank you once again for a wonderful post. I'm so glad God is healing you and I love your attitude. Thank you. You have such a gift with words I hope you'll continue writting for a long time. You always help my faith, I've been praying for you and it's so cool to see God in action, and I feel blessed to see your faith and willingness.
    Best wishes,

  2. You are so amazing! We love hearing from you. You give us hope and make us think about how we can live better. I truly appreciate life more knowing you.

    Thank you!

  3. Hi Rachel. I've followed your blog for awhile now. I survived breast cancer and can relate to a small part of what you are going through. What alternative treatment are you using in addition to changes in diet? My son-in-law has a stage IV glioblastoma brain tumor and we would love to know what has been effective for you. If you care to share, please respond here or on my blog. Thanks and best wishes! I saw you at the Elevate race back in May!

  4. So so so happy for you! Prayers from Maryland

  5. Hey Rachel, it's Karen Hess from Cross Country way back when.
    Our lives are both so different now, but I want you to know that you've truly inspired mine. You've helped me see the beauty in life more and your testimony strengthens me!
    I know this is cheesy, but reading your stuff makes me think of a quote from a favorite show (Doctor Who):
    "He transformed the pain of his tormented life into ecstatic beauty. Pain is easy to portray, but to use your passion and pain to portray the ecstasy and joy and magnificence of our world..."
    I think that's what you do - you use your hardship and pain to show how wonderful the world is in spite of all that.
    Keep going! You're amazing.

  6. Rachel. Thanks for inspiring me to live e my life better. You are amazing. Thanks for sharing this post :)

  7. Rachel,
    You don't know me, and honestly I guess I barely know you but somehow I stumbled upon your blog and lets just say it has given me a whole new perspective of life. You have inspired me so much to just be a better person in general. Thank you for sharing your testimony and your life! Love and prayers being sent your way!

  8. As always, a great blog post. Thank you for being an open book and inspiring me and many others. Love you!

  9. Hooray for you and your family! So glad that it is all going well for you. I keep you in my thoughts. So glad the diet is helping you. I have high hopes for your continued health.

  10. Rachel,
    I've follwed your blog since you started it and cant even remember how I found it but I think you are doing and acting in a way that is so mature and am very proud of you...I could go on but I was commenting because you mentioned your change in diet-have you or your mom heard of the GERSON diet/therapy? It would be worth your time looking into. It's a therapy having to do with a strict organic diet of raw fruits/veggies allowing your body to heal itself (or something...I'm no expert) they actually have a program based in Mexico (you have to be accepted into)figured any information might help :)
    Support from California

  11. paula your instagram friendJuly 29, 2014 at 8:53 PM

    I had no idea things were so critical. If I said you were would be am injustice. You are beyond amazing. Your wisdom, your BRAIN, your optimism..your love for life. You ARE LIVING sweet girl, enjoy every moment. You are changing lives across the country! All of the love, prayers and well wishes to you. God bless you...sounds like he has:)

  12. I just came across your blog tonight... I do not know anyone personally affected by DIPG, but became an advocate in the fight against DIPG in December of 2013 by coming across a mother's blog about her 6 year old daughter Jennifer Lynn Kranz. She only lived 3.5 months after diagnosis. I can't express the amount of gratitude I have for you due to you sharing your struggles with all of us. You have a voice and the ability to articulate your day to day, that a younger child may not be able to express... so thank you for that. I also comment because how you stated that you cannot believe that the intricacies of the brain can be possible by an accidental big bang explosion way way back in the day. I absolutely agree! The way everything and all aspects have to meet up perfectly and divide and grow to create a human being, animal or insect are beyond science! I experienced the same thing watching a video of Lou Giglio, talking about the solar system... the enormity of it all, and the perfectly aligned magnetic fields of space and size... it's no way some accidental random BOOM! If you haven't yet, check Lou out, he his fantastic! Keep sharing your story, you are and will make more of a difference and impact than you will ever know! Thank you! #love4jlk #unravelcancer #dipg

  13. Movers And Packers Kolkata
    Top packing and moving services providers in Kolkata West banagal.
    Packers And Movers Kolkata