The Girl With The Pink Ribbon who WINS!

4 01 2012

Me with my favorite little guy, Theo, at the Amy Rauch Neilson Bowling Benefit, March 2010. Photo by Kristi Rugh Kahl.

My doctors have told me that even though I feel worse, I’m actually in a better place than when I was diagnosed almost exactly a year ago. Then, breast cancer had invaded my breast, the lymph nodes leading from my breast, and both my lungs.
After nearly a year of heavy doses of chemotherapy, the breast tumor is nearly gone, the lymph nodes are clear, and the nodules in my lungs have shrunk dramatically. That should be — and is indeed — cause for celebration.
Yet, this is the worst I’ve felt since my diagnosis. I was more mobile than I am currently back when I had my six-day hospital stay, due to an infection, in July 2010. I’ve been able to ride out this diagnosis so far and, around chemo days, live lots of happy, very active Happy Squares. Until now.
You know those times when you are so very sick and miserable that you think you’re going to die — but then you know you really aren’t, because it’s just the flu, or a terrible cold or some other run-of-the-mill virus that normally healthy people can combat? Well, that’s the way I’ve been feeling — sometimes like I’m so sick I’m going to die.
And therein lies the difference. Because of the serious nature of my diagnosis, I begin to wonder if I am going to die. It is terrifying to be in a Kohl’s Department Store when your right leg gives out and just stops working. It is terrifying to learn that behind that pain and malfunction, there’s cancer in your bones. And it’s terrifying when you learn, in the days following a PET Scan, that the cancer that you have so successfully forced out of your soft tissue has relocated to your skeleton.
My doctors tell me that though I may feel this way, it’s not an accurate reflection of where I’m at. There are more tools to fight breast cancer that has spread to the bones than breast cancer that’s in the soft tissue — and breast cancer in the soft tissue is far more life-threatening. For example, those tumors in my lungs? Had they grown instead of shrunk, had they not responded so beautifully to the chemo, they could have literally suffocated me. So, though I felt really good during those months — outside of my treatment days, of course — inside, the battle was raging.
Now, I’ve got the opposite predicament. While it’s no picnic having cancer in your bones, it doesn’t present the danger that it would in my soft tissues. Yet it feels horrible. The worst pain has been in my shoulder blades, where, if I lay in one position for too long, it feels like someone is stabbing me in the back with a butcher knife when I try to move. I’ve never been stabbed in the back with a butcher knife, thank God, but that, that has to be how it must feel. Excruciating. Sharp. Unrelenting. And then I am stuck in that position — let’s say, my bed — so I have to call out for someone to come and help me.
Bottom line is that if I had to base my prognosis on how I feel, I’d be forced to admit that it feels like I’m going the wrong way, downhill. I’ve just been so very, very afraid. I’m not only in pain, but I do not have much stamina. I cannot get through a Wal-Mart without using a scooter anymore and in fact, since Christmas Day, I cannot get my own groceries — scooter or not — because my bones are so frail that it has become dangerous for me to lift a bag of groceries. I broke my right arm near my shoulder on Christmas morning. All I was doing was reaching under our tree to move one package aside to get to another. Neither package weighed more than three or four pounds, five tops. Yes, the angle was probably awkward, but I had no idea that I could so easily snap a bone.
I spent both the day before New Year’s Eve and New Year’s Eve in the ER. First there was the call from my oncologist, who had taken X-rays of my arm earlier in the week. They showed a fracture and someone from orthopedics needed to look at the films and examine me. Then, New Year’s Eve night, for no apparent reason, my temperature was on the rise. Finally, when it reached 102, we decided it was time for yet another trip to the ER. Fevers are very dangerous in chemo patients. My right arm has a fracture near the shoulder — which has been weakened by a cancerous lesion there — but it’s not all the way through the bone, so Orthopedics opted not to put a pin in it. That would have meant surgery — something we want to avoid while I’m going through chemo, of course. My arm should heal on its own as the Xgeva shots kick in — I get my second one on Jan. 10. Those are bone strengthening shots and the hope is that while the Xeloda kills the cancer in my bones, the Xgeva strengthens them. As for the fever, it came down while I was in the ER and because my blood counts are normal — yay! — they sent me home on an oral antibiotic. Whew! That was close. I was sure I was going to be admitted during one of those two trips and was so very happy to be released to go home to my own bed, my own family.
The upshot of the ER was that while I was there, they worked on different strategies for managing my pain. Those seem to be helping, though I’m certainly not the rabbit I so recently was. My doctor says to hang in; I’ll be that rabbit again one day very soon. I sure hope so. Losing my mobility, my ability to drive, and do the things of a normal day — get groceries, run to the post office, care for Theo or even myself — it’s very difficult.
This morning came heartbreak. My cousin Christine came over to pick me and Theo up for the day and take me to her house so Theo could play with his cousins and I could rest. Theo lately has been refusing to get dressed on his own, wanting instead for me to dress him. When Christine came upstairs to check on his progress and saw he wasn’t getting dressed, she said, “You are six years old. You are old enough to dress yourself. Get dressed.” That’s when he said, “My Mom is a lot older than that and she can’t dress herself.”
I burst into tears and Theo felt bad immediately and kept saying, “Mommy? Mommy? Please stop crying.” I knew he hadn’t done it out of spite. It’s just the view of the world he has right now through his six-year-old eyes.
But that struck the chord of my fear — that I’m losing my abilities and therefore, slowly losing this battle. That I will one day end up being The Girl With The Pink Ribbon who fought so very hard, but didn’t win the war. And I don’t want to be remembered that way — not by anyone, and certainly not by Theo. That’s when this comment made its way into my email box. It’s from my long-time friend and former professor and Director of the Oakland University Honor’s College, Dr. Brian Murphy, and his wife, Toni.

“Toni wanted me to relay her thought about your comment about not wanting to be the girl who ‘lost,'” he wrote. “Every day, she rightly says, you win; you really do. YOU WIN.  We realize–how could we not?–you write so well about it–how terribly, terribly hard this struggle is . . . but, of course, you are doing this for you–not us.  We love and support you.  Keep on winning.  Love from both of us–though the thought is Toni’s.” — Brian

Brian regularly drives down from Rochester Hills and picks me up to take me to lunch or dinner. He and Toni were the first ones to ever introduce me to Shakespeare through a college field trip to the festival in Stratford, Ontario. They are the reason why Don and I are married. They are two brilliant, amazing people who both have hearts of gold and stories to share that mesmerize me. To honor them, I’m going to begin every day thinking about how I’ve WON, not what I’ve lost or whether or not I’m losing. Every day, I WIN. Every day from this day forward, I will be The Girl With the Pink Ribbon who WINS!

Copyright 2012, Amy Rauch Neilson

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32 responses

4 01 2012
Sean

You absolutely do win every day, Amy!
Keep!
At!
It!

4 01 2012
Molly MacDonald

Amy,

I cannot imagine fighting this battle and feeling so poorly . . . I think each person’s cancer journey while having many similarities is as individual as grief . . . you must go through so much of it alone and figure out what you are going to do, how , when and where . . .all of us can stand beside you in support and prayer, yet not one of us can fight this for you. I can only pray for wisdom for treatment decisions and God’s perfect peace . . . you need to know that ultimately, no matter what,
He wins when He uses your life for the benefit of others, which HE is doing . . . just praying for you and your family.

4 01 2012
Meau

They are absolutely right. You ARE winning — every day. Every day since your diagnosis that you woke up and faced this battle, YOU HAVE WON, and you will continue winning. None of us have any doubt about that, at all.

4 01 2012
Elaine

And that you are a WINNER!!!!

4 01 2012
Eleanor Sun

Amy, I think of you every day and send wishes for continued good health and spirits. You amaze me with your strength. Anyone who reads your blog and all the comments left on it knows that you win….in so many ways…

4 01 2012
Demmy Lionas

Bless your heart. May God strengthen you and give you peace as you continue treatment. Thank you for sharing your journey with all of us. You ARE a winner in my book!

Prayerfully,
Demmy Lionas (friend of Maggie Norton)

4 01 2012
Karen Roth

You go, girl! Congratulations on winning today!

Maybe The-Girl-with-the-Pink-Ribbon-Who-WINS is the newest amazing superhero?

4 01 2012
Amy Rauch Neilson

I love how you think!

4 01 2012
Alison

You sure are a winner Amy…..an amazing and inspiring woman who, with her doctor’s great army of medicines, is going to beat this stupid cancer and soon be rushing around Meijers or Krogers and complaining about the long lines at the check out!

4 01 2012
Scot Orwig

Keep winning, Amy. I know it must be scary but you really are making progress. I hope the pain keeps getting better and better and we have rabbit Amy back soon!

4 01 2012
Kitty

Glad to see you back….you are a winner evey day.

4 01 2012
Maija Kibens

When Michigan just won over Va. Tech it was a fluke (according to my husband). When Amy wins over cancer it is no fluke, it is guts and glory (according to both of us)!

4 01 2012
Chelsea

Nothing to add, but am here, cheering you on.

4 01 2012
Jennifer

One word: Habitrail.
I can’t wait to get back into it with you!
Love you dearly,
Jennifer

4 01 2012
Deb Peters

I was talking about you on New Year’s Eve with some friends, when I just burst into tears. ( I didn’t even know then that you were at the ER at the time). You are a winner and you keep winning every day. The news in this blog is very encouraging. At this rate, the little rabbit in you will be going at mock bunny speed quite soon. xoxoxoo

4 01 2012
Trish

Amy,
You are nothing short of amazing woman!

4 01 2012
Rita P

Ditto to all the great wisdom the others have already poured forth. You inspire to a depth you cannot even imagine!
With love and deep respect,
Rita

4 01 2012
Lori Madison

Yay Amy!! God’s mercies renew each morning!! You are absolutely winning every day!!

5 01 2012
Kathy Fecher

Amy- Tears are falling on to my keyboard as I type this reply after reading your recent post. Even though we can be described as “friends who have not yet met”, I have followed your blog for months now. You have been in my heartfelt prayers with each passing entry. I have celebrated your success, smiled at your Theo stories, and struggled in your set-backs. I pray that whatever path this newest chapter takes you in, you will find comfort in the fact that so many people love you. So many people are praying for you. And so so many people have always known…what in times like these might seem impossible to believe…YOU ARE AND ALWAYS WILL BE A WINNER!!!!!!!!!!!!!!!

5 01 2012
Ken and Gay

Amy Dearest, You ARE winning and you have God on your side helping you fight the battle against cancer each and every day! He is lifting you up and will have you on your feet again because He is your strength. You are never alone and surrounded every minute of every day by so many prayers from far and wide! Much love XXX000

5 01 2012
Dave Hogg

Toni is, as always, right. You win every day, and we all win because of it. It doesn’t matter that you are scared, or are in pain, or think you are going to die, because you keep going. No matter what, you always keep going, and you make Theo’s life better, and you make Don’s life better, and you make life better for the people who love you, and you make life better for everyone who comes into contact with you and your amazing work. You change lives and you save lives, and you do all of it when 90% of us would be curled into the fetal position under the table.

I have a lot of things that make me proud – my family, my friends and things that I’ve done to make the world a little better. But near the top of my list is, for the last 25 years, I’ve been a tiny part of your magnificent life. I’m planning on being a part of it for at least 50 more.

Love you. Forever and always.

5 01 2012
Anne

Winning isn’t always easy, but you are. Your writing is an inspiration to me and I’m sure to many others. Please know I am praying for you and may your pain subside and you kick cancer’s ass very soon. I am praying you will — God needs to keep people like you around here.

5 01 2012
Sharon L-S

Amy – I am so sorry to hear about the broken arm. Praying that it heals quickly and the new meds do the trick. Theo’s actions remind us that Cancer doesn’t just strike a person but the whole family and surrounding support system. But you are a strong woman (you may not feel that way right now but you are) and you have a very strong support system in both the friends, famil and medical personnel you see all the time and your army of blogosphere friends. Sending you soft hugs, warm wishes and lots of prayers.

ps If you saw the Orange Bowl last night, think of yourself as West Virginia and your cancer as Clemson. West Virginia scored 70 points crushing Clemson. As one of your cheerleaders, I say “Go Amy Go, Fight Fight Fight, Yeah……. Amy!”

5 01 2012
Rita O'Connor

Hurrah for YOU, AMY!!!!! What an inspiration you are to all of us who know and love you. There is no other person I can think of who has such a vast cheering section hollering “GO!!! AMY!!!”
Never give up. Be STRONG! We all need you in our lives. We INSIST on
having you. No questions asked.
Give it all to God. Just say “For You, Lord” when the going is hardest, then all that you endure becomes a prayer. And you know that Phyllis and Ted and watching over you from heaven. Think and dwell and revel in their love, darlin’
Mom Reet

5 01 2012
Kristi Rugh Kahl

Perfect blog to let everyone know where you are with this. I can’t believe it’s been a year! WOW…what you have gone through and where you are today is nothing short of amazing. While yes its been a tough battle, you are winning it! It may not physically feel like it but truly you are. And another year from now, we’ll be celebrating what you’ve overcome in 2012.

5 01 2012
Kimberly Brown

You go girl!!! I hope you know that every day that you win, you win not only for yourself, but for all of us that are fighting the battle with breast cancer. Your story, your willingness to share your journey, inspires me to keep fighting…to keep winning….
If I ever have the courage to share my journal of this journey, you will play a prominent place….a stranger whose story helped to keep me focused….
Blessed Be Amy…..

5 01 2012
K. Ritter

We were so sorry to learn about your broken arm and the pain and limitations that you are experiencing. It must be so difficult for all of you.
But…I have learned the importance of taking just one day at a time.
The doctor has given you such a hopeful word…you are winning this battle, even though right now it must not always seem like you are winning.
You are going to make it and in the process your courage and your willingness to share this journey is giving inspiration to many.
Thoughts and prayers are with you….
Kris and Bill

5 01 2012
Aunt Doris Nielson

And the winner is… Amy! You will daily win with God/s help and these many prayers rising from those who LOVE you. And there is comfort in the fact that GOD loves you even more than we ever could. Nonetheless we do love you, too. And we pray and have many of our friends praying, too. love, Aunt Doris

5 01 2012
Sara Nickerson

Amy, you truly are a winner! I’ve followed your blog for nearly a year now, as I battled my own fight against cancer. It has been so inspiring and sometimes, sad, but always spoken like a WINNER! I met you briefly in September at Bras for a Cause, and I have to tell you, you really made me feel like a winner, too, having helped ease my case of stage-fright, and your blogs have been very helpful and informative to me, and to others. You’re going to beat this and dance across that stage again! Keep your spirits up, and know that you have a lot of folks praying for you, and your family.

7 01 2012
cookie

Hi Amy,
You are a winner and will keep on winning.
My prayers are with you.
Keep it going.
Hugs and sunshine,
Cookie from Fla
AFH

9 01 2012
Sharon Dumas

God bless you and your family and keep you in the palm of His hand.

11 01 2012
Erin Dunn

Amy, you are a winner. I’ve been following your blog for about a year, as my sister in law battled a different kind of cancer. You have inspired so many with your courage and determination. Thank you for sharing your story with so many people. I will be praying for you and your family.

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