Give Me Just a Minute…

30 01 2011

http://breastcancer.about.com/od/targetedbiologictherapies/p/parp_basics.htm

Most days, I am steadfast in my belief that I will be on this planet for a long time to come. Today is not one of those days.

This article on PARP Inhibitors is the optimistic one. I’m not going to post the links to the Jan. 20 issue of the New England Journal of Medicine articles on the PARP Inhibitor (BSI-201) – they are tough to read and have greatly affected me this weekend – me and my family. Estimates in those articles is that the PARP would only prolong my life by 5-12 months. That’s a best-case scenario.

That said, I am finally and for once in my life happy to be BRCA 1 positive, as THIS is the population of breast cancer patients for which the PARP Inhibitors are the most effective. THIS is the population of breast cancer victims who, along with a triple-negative tumor receptor status — stand the best chance of beating this monster and living for a long, long time. THIS is me; my scientific, DNA profile.

I know I am far from a statistic. And that is why I am trying right now NOT to read some of the numbers — 15 percent chance of survival per my staging, certain number of months per the PARP study, etc. I don’t need to know this right now. Maybe not ever. Cancer survival is a mental as well as a physical task and I need not flood my most imaginative mind with images of the worst-case scenario.

Give me just a minute. I’ll pick myself back up in no time flat and I’ll be outside sledding down the hill in our back yard with Don and Theo. Just as I did yesterday. Thirty-seven trips down the sled run on a small blue saucer, screaming, spinning, yelling “look! no hands!” as if I were riding a roller coaster.

Then again, maybe that’s exactly what I am doing.

Give me just a minute.

— Amy Rauch Neilson

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59 responses

30 01 2011
jennifer nemeth

Oh my dear Amy, optimism is the only road we can travel. You are a survivor to the very core and in the same way you made it to the bottom of the hill and back to the top 37 times on the saucer, so to will you make it through this battle. This monster will go down defeated and you will be here victorious!!!

30 01 2011
Tami Kopek

Just wanted you to know I finally got online and read this. No need to keep updating me via text, but feel free to holler if I can do anything for you! I’m so glad you’re having some nice family time this weekend, especially while you’re feeling good. I had my most recent treatment on Tues and am feeling more fatigue this time around but otherwise it is similar, no compliants. Given the frequency of your treatments, I hope they won’t be too hard on you. We love you!

30 01 2011
Scott Orwig

What I’m learning (even though I’m just a rookie) is that odds can only tell you so much. You obviously have a great medical team, you are doing just the right things physically and mentally and in treatment choice, you’re young, and you’ve been through this before. The stats blend together and remove so many individual factors that are to your advantage. Given your advantages if there’s even a 15% chance of remission then you are likely to be in that 15%.

That said, take as many minutes to “rest your courage” as you like. I sure am.

30 01 2011
Cheryl Buck

Amy you are the strongest woman I know. You will survive this. Your attitude and faith will get you through.
Love you.

30 01 2011
melissa moyer

good luck

30 01 2011
Sherri Novis

Statistics are bunk. I’m doing them now wondering how on earth scientists can say anything about anything. I’m producing numbers, that are statistically significant – and hardly any of the data fits what the statistics say. YOU ARE NOT A STATISTIC! You are a vibrant, FULL OF LIFE, creative, loving, WORTHY, PRECIOUS human BEING!!!! You want to talk statistics? Think about all of the healthy vibrant, pissed off cells in your body that are gathering all of their cunning, passion, creativity and vitality to kick the minority cancers ass!!! The light comes to you and through you Amy. See it disolving and evaporating everything less than. You are a Godess of love and light. THAT’s what YOU are.

31 01 2011
Holly Smith

Amy, my prayers are with you and with your family. I have walked the past 2 years in the Susan Komen Breast Cancer 3 Day to support every single person affected….so in 2011, my 3rd consecutive year walking, I will walk for YOU! I know you will beat this just as I know my legs will carry me 60 miles once again. Keep the faith.

Holly (Dianne’s cousin)

31 01 2011
Amy Rauch Neilson

Holly,
You warmed my heart. Please send the info on how we can help you to raise money for the walk and I’ll get it out there.

31 01 2011
Holly Smith

No way girl, I am going to convince you and Diane to walk with me in 2011!! Let’s all kick cancer’s ass together.

31 01 2011
Kurt M.

Amy you don’t know me and I don’t know you but a young lady told me about your blog so I felt the need to come to write to you and say that your a strong and beautiful women that will beat this so keep your faith in God. Myself and friends will say a pray for you and we will keep you in our thoughts.

Angels are the guardians of hope and wonder
The keepers of magic and dreams
Angels watch over you .. wherever you go
Keeping each day perfect .. and promising
A bright new tomorrow
The motto of all Angels is .. “It’s a wonderful life”
Wherever there is love .. an Angel is flying by
Angels help you carry the ball .. carry the tune
Carry your weight .. and carry on
Your guardian Angel knows you inside .. and out
And loves you just the way you are
Angels keep the world safe for humming birds
And butterflies and rainbows in spring
Angels keep it simple .. and always travel light
Angels love whispering secrets .. and whistling in the dark
Whenever you hear music .. an Angel is speaking to you
Remember to leave space in your relationships
So the Angels have room to play
Your guardian Angel helps you find a
Place when you feel there’s no place to go
Keep a spare Angel in your pocket
Angels carry high-beam lights to
Help you through the darkest hours
Whenever you feel lonely
A special Angel drops in for tea
Angels know that love is only a four letter word
We are always “Angels on call” for a friend
Everytime you hear a bell
Another Angel has earned its wings
Angels are with you every step of the way
And help you soar with amazing grace
After all, we are Angels in training
All we have to do is spread our wings .. and fly!!

31 01 2011
Debbie

Good Luck!

31 01 2011
Colette

God Bless You.

31 01 2011
Lynn Gibbs

Amy,
You are in my heart and in my prayers. I agree with Kurt you are a strong, beautiful woman. God will see you through and even though you may not always be aware, will continue to hold you like the cherished child you are.

O’ Lord God, Our Master Healer,
There are those moments when wellness escapes us,
moments when pain and suffering
are not dim possibilities
but all too agonizing realities.
At such moments we must open ourselves to Your healing.

Much we can do for ourselves;
and what we can do
we must do—
healing,
no less than illness,
is participatory.

But even when we do all we can do
there is,
often, still much left to be done.
And so we turn as well to our healers
seeking their skill to aid in our struggle for wellness.

But even when they do all they can do
there is,
often, still much left to be done.
And so we turn to Life, to You,
to the vast Power of Being that animates the universe
as the ocean animates the wave,
seeking to let go of that which blocks our healing.

May those of us
whose lives are gripped in the palm of suffering
open
even now
to the Wonder of Life.
May we let go of the hurt
and Meet the True Self beyond pain,
the Uncarved Block
that is our joyous Unity with Holiness.

May we discover through pain and torment
the strength to live with grace and humor.
May we discover through doubt and anguish
the strength to live with dignity and holiness.
May we discover through suffering and fear
the strength to move toward healing.

–adaptation Rabbi Rami M. Shapiro
(from Life Prayers from around the world)

1 02 2011
Terri

Thoughts and prayers are being sent your way now and in the many days to come.

1 02 2011
Sue Kachorek

never met you in person Amy, but the courage and hope and sheer joy of living reflected in your writings make you my hero. Just subscribed, I want to walk this journey with you.
Sue Kachorek.

1 02 2011
Andrea Dean

Amy, you don’t know me but I received your blog site from a friend, Leah Matisse. I will keep you in my prayers, they work hand-in-hand with treatment! You must have quite a support network around you and are obviously a strong, strong individual. You keep fighting the good fight and win this battle, again. You will do it and may God bless you.

Lots of prayers and encouragement to you, Andrea Dean

1 02 2011
Jill Slocum

Hi Amy,
You are an inspiration and I look forward to reading your blog and following your recovery! My prayers are for your healing.
Jill

1 02 2011
KK Santini

Amy, I know you through Diane and am keeping you and your family in my heart. Meanwhile, someone’s sending you quite the snowfall to keep you sledding.

1 02 2011
Jill Baker

Amy,
I’ll keep you in my prayers. I do not blog but I hope to someday write and publish a book myself, so how could I not respond!! I hope the best for you in all you do. After our blizzard tonight, I think I’ll take my boys sledding and actually go down the hill….
Jill

1 02 2011
Mark Stesney

Amy,
I am here to support your dream. Praying for you and knowing you will achieve your dream. Bless you,

Mark

1 02 2011
Sherri McClinchey

Thoughts & prayers are with you. Good Luck with the publishing of your book.
Keep SMILING!

2 02 2011
Nancy Flynn

Amy,
We have not met, but I wish to extend my prayers and encouragment as you battle through your cancer. Your courage and strength shine through your words. May God shine his light upon you.

2 02 2011
Marcia Keller

Amy – You seem like a very strong woman and living your life to the fullest. All of us women commend you and your strength – what an example you are especially for the women in your family. I will keep you in my prayers – may you be reminded that God is with you every step of your journey.

2 02 2011
pam stroski

Amy, Bravo for the incredible sledding accomplishment. as I sit here inside on a very snowy winter day, I wish I had as much enthuasim as you do for the snow! Best wishes for a book that is sucessful as your sledding!

2 02 2011
Fran Flater

Amy,
you willbe in my thoughts and prayer

Fran

2 02 2011
Dena

My prayers are with you and your family and I wish you the best of luck with your book. Cancer has recently hit home and it’s been extremely tough to watch someone you care about and love go through such a tough battle. My heart goes out to you. JKL

2 02 2011
s

Our thoughts are with you

2 02 2011
Mary Johnson

Amy – My prayers & thoughts are with you and your family. I would like to have met you under happier circumstances but I do look forward to getting to know you now through your blog and book. May I request an autographed copy?
Take care, Mary (in Ohio, formerly from Michigan too!)

2 02 2011
Susan

May God Bless you.

2 02 2011
Annette Cox

Amy – Our thoughts & prayers are with you and your family. Although we have never met, you strike me as a very positive and optimistic person. You have alot of tenancity and keep fighting the fight.

God Bless.
Annette (Michigan)

2 02 2011
Evonne Woloshyn

My prayers are with you.

2 02 2011
Heather Dillon

My prayers and thoughts to you and your family!!

2 02 2011
Jeff Rodic

Amy – Our prayers and thoughts are with you and your family! Put your faith in Jesus and he will handle the rest! We wish you the best and keep stay positive!

2 02 2011
Wendy

Amy,
You are a very strong and inspirational women. Keep-up the good fight. I’ll keep you and your family in prayer.

Wendy

2 02 2011
Christine

Amy, Your in our prayers.

2 02 2011
Lisa Wojtowicz

Amy,
Thoughts and prayers with you. You WILL be our sledding down that hill.
Keep the faith, God is good.

2 02 2011
Jennifer

My prayers are with you!!!

2 02 2011
Patricia Nolf

Amy, You are an inspiration to other women who are on this journey and I share this journey with you. I do believe God has a plan, maybe we’ll all ‘dance’ the ‘dance’ in Heaven. This is my mantra and it was given to me by a breast cancer survivor after I was diagnosed in 2001: “The Healing Grace of Jesus Christ Is Working in Me Now.”

3 02 2011
Lisa

Only God knows the total number of your days, which he planned for you before your birth. Thank you greatly for being an inspiration to women fighting to be yet another survivor… your words encourage & uplift… I will keep you & your family in my prayers.

3 02 2011
Bob Deady

Thank God for your strength, your courage, your example. We may be here for each other, but you are definitely here for us! Thanks so much for your blog. I am looking forward to reading more.

3 02 2011
Rev. Larry Bernard, O.F.M.

Way to rejoice in life!
Be ever thankful!
Pray always.
In His will is our peace!

3 02 2011
emily-clare foran

beautiful. stay strong.

4 02 2011
Vicki

Keep the faith!

4 02 2011
Ariana Christian

I think that you are a really strong woman, amy and you cant give up. sometimes it mite look as if you are fighting a fight you cant win, but you have to look away so the feeling cant grow on you because I trust you and I know that you are stronger then this cancer.I belive in you!!!!!

5 02 2011
Rachelle

Dear Amy,

I hope your book gets published and you win the fight!

I will pray for you.

5 02 2011
Melaney Sanchez

Dear Amy,
Any friend of Diane’s is a friend of mine too. Know that I am praying for you and your family. Both of my grandmothers and my mother-in-law had breast cancer. I am a part of a high risk monitoring program in Annapolis- so thankful for that… I have a daughter- as you can imagine I want the future to be different for her and all women. Thank you for fighting and for educating us. Know that you are not alone in this! Best, Melaney

5 02 2011
Tami Chapman

Prayers to you.

5 02 2011
Bernie Lester

Amy,
God’s Speed for your book being published and prayers are with you.

5 02 2011
Zara Evans

Continue with your writing. Don’t let cancer beat you, you beat cancer. Trust your book will be published soon.

5 02 2011
Lisa Harford

Keep fighting…

5 02 2011
Lauraine

Best of Luck with everything. You are in our prayers

6 02 2011
Janet

May Peace, Love, & Hope be yours

6 02 2011
Rose Owens

God bless and keep You!

6 02 2011
Carol Cox

Amy, My best friend, Diane, was diagnosed with a very aggressive form of breast cancer when she was 28 years old. Statistically, her chance of surviving ONE year was ZERO. She lived her life fully for another 12 years despite the odds.
She had the zest for life that I hear from you. You are wise to identify yourself as a person rather than a number. My thoughts and prayers are with you.

6 02 2011
Vanessa Askew

You’re in my prayers.

6 02 2011
cindy

Amy, stay strong.

7 02 2011
Kellee

Amy,
May every day be joyful and fulfilling.

9 02 2011
Clarice Jo Waldecker

Hello Amy, I am a 4 yr sur-thrivor and a volunteer for “The Pink Fund” Wish you all the best with getting your Memoir published. It should be incredible as it sounds like you are incredible. The Breast of Good Luck to you!

15 02 2011
Laura

Sigue adelante Amy! I bet you didn’t know that you were going to receive a posting in Spanish.

Thank you for your blog.

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