“Don’t Look Around. Look Up.”

19 11 2011

Photo Copyright 2011, Kathy Stadtfeld

Editor’s Note: A two-part article on me, my family and the BRCA genes appeared Sunday, Nov. 20 on the front page of  The Detroit Free Press. Part II appeared Monday, Nov. 21.  Also, the Canton Observer ran a nice piece on the Dec. 3 Sky Lights of Love Benefit. You can go to the Events tab on the blog homepage and click on Upcoming for more info.
When my close friend Kathy Stadtfeld shared this photograph with me, I was astonished.  I hadn’t yet shared the story of that January night with her, but somehow, she had captured on film the very vision of God’s pure white light as I see it in my mind’s eye.  I begged her to let me use it on my blog.  “But of course,” she said.

It was three-thirty in the morning on a cold winter’s night last January. I was sitting alone in my home office, exhausted from the physical and emotional battering I’d taken. In the two weeks leading up to that night, I’d found a lump wedged between my left implant and the thin layer of skin on my chest. I’d been through a biopsy and very quickly learned that yes, breast cancer is possible without breasts. I’d undergone surgery to have a port inserted on the right side of my chest, in anticipation of numerous rounds of chemotherapy. I’d been through a very painful lung biopsy to confirm what we already suspected — the cancer had spread to my lungs. I was a Stage 4.

That’s a heavy dose of hard reality for anyone, but especially for the mother of a five-year-old boy. Hours earlier, he’d  fallen into a deep sleep, not a care in the world, clutching his stuffed bear. I’d just finished reading to him about the antics of a monkey named Curious George.

Beside me in bed, my husband, Don, had finally succumbed after a string of sleepless nights filled with the terror of my diagnosis, his world closing in and crumbling around him. I couldn’t sleep. My tossing and turning disturbed Don, who would change position or roll over. I decided that if I was going to have insomnia, it’d best be someplace else. I crept downstairs.

Nighttime never seems darker than in January. Gusts of wind blew the tree branches to and fro, and they took turns scraping noisily against the windows, then the side of the house.

I was alone and completely exhausted. I had nothing left to give the night. No more tears, no more worries, no more ‘what ifs’. I was done. After what must have been an hour or more, I thought about heading back upstairs to bed, but couldn’t summon the energy. So, I sat there in the dark, at my desk, the mixture of snow and freezing rain pelting the skylights like so many forks striking champagne glasses at a wedding reception.

And that’s when it happened.

One minute, I was sitting there in complete darkness, silent, ridden with fatigue. The next, I was filled with a white light. A powerful, pure, all-encompassing white light.

I never saw the light, yet I knew instinctively that it was white. Then words: Everything’s going to be OK. YOU are going to be OK.

But the words weren’t audible. I can only describe them as a rapid-fire communication that came from someplace outside of me and entered my mind in a nanosecond. It wasn’t a conversation. It was an understanding.

I felt nothing but peace and serenity in those fleeting moments. And they were fleeting. As quickly as the white light filled me, the message was communicated, they were gone.

I was still sitting in my office, but I was different. I knew. I knew that it had been a message of comfort from God.

And though it took me a while to process, to truly absorb, what had happened that night, I’ve never had any doubt as to what it was. Not for a moment. Not even a flicker.

It’s going to be OK. I’m going to be OK. And I have a lot of work left to do here on earth before it’s my time. This I know for sure.

Yet, I’m a mere mortal and inherently flawed. And though I’d like to tell you that since that night, I’ve been able to push all fear, all doubt, all questions aside, and proceed with utter confidence, I haven’t. There are still times — and plenty of them — when I am wracked with sobs, days that are filled with despair, void of hope.

Perhaps my sister Julie said it best when she told me that during the toughest, most grueling of moments, I must not look around, but rather, up.

That’s a tall order when you’ve been hurled into a world of white coats, blood draws, chemotherapy infusions, regularly scheduled scans to see whether you are one of the lucky ones whose cancer is shrinking…or not. When, in the months that followed, you hear over and over again the words from the people here on earth who preside over your course of treatment:

Stage 4 breast cancer is incurable.

The average lifespan for a patient with your diagnosis is three years.

You think you can live 20, or even 10 more years? That’s just not realistic.

You will need to undergo some form of  chemotherapy for the rest of your life.

Each utterance is a blow, some harder than others, but all require psychological recovery time in much the way my body needs time to rebound physically after each chemotherapy infusion. It is hard to remember to look up when the script is playing out all around you.

I have my tough moments, times when I cannot imagine continuing this course of treatment that on numerous occasions has physically ravaged my body to the point that I’ve needed to be hospitalized in isolation, or transfused with platelets and bags of whole blood. Times when the ER doctor has looked at me and said, “You’ve got about a 50/50 chance of making it.”

Yet, I will continue. Because I know I am on the path to healing and that my work here, God’s work, is not done. Not only did He tell me so, but I’m watching it play out. Just this past week, a member of my medical team remarked that my results from nearly a year of treatment — 44 chemotherapy infusions — have been “robust.” I love that word and the context in which it was used. Indeed, my progress has been steady, with each scan revealing a continually shrinking cancer, along with areas that have fully healed.

Still, I know the road ahead will continue to have its twists and turns, its bumps and potholes. It is in those darkest of moments when I need to remember the light and the communication from that dark January night, and my sister Julie’s words. “Don’t look around. Look up.”

Copyright 2011, Amy Rauch Neilson



25 responses

20 11 2011

Awesome photo – awesome testimony – awesome God!! Thanks for sharing Amy! Prayers continuing to flow your way…

20 11 2011
Rita P

Ditto to Carol’s loving message.

20 11 2011
Robert T

Beautiful photograph. Beautiful post.

20 11 2011
Amy Lange

Beautiful, Amy! I had the same experience as a teenager after a pretty terrible car accident – I suffered a pretty severe skull fracture, facial paralysis, brain surgery… I was sort of sitting around one day – when all of a sudden – I heard it too, “you’re going to be ok.” I kind of looked around – I heard it again – but I didn’t really hear it – like you said – it was this strange understanding – a strange peace… I went out to the kitchen and told my mom and she stopped dead in her tracks and said, “I heard it, too.” And it was true – I was ok. You do know that you’re doing the job you were meant to do right now – as you write – raising awareness – and you do have much left to do. I hope you get a chance to see the Mitch Albom movie on ABC the Sunday after Thanksgiving – I think it’s at 9pm on November 27th (my mom’s birthday) – a central message of this movie is looking up – I just saw the premiere the other night – you’re posting is certainly timely – and perhaps serendipitous – hang in there, friend, and have a Happy Thanksgiving – there is, after all, so much for which to be thankful!

20 11 2011
Susan Mettert

Awsome story. God and I have a deal He sends me Butterflys, least I should forget he reminds me . You are loved and in our prayers.

20 11 2011

Love and light to you, through you, all around you and always within you.

20 11 2011

The photo WAS perfect for this! What a wonderful post! You always inspire me. ❤

20 11 2011

That was beautiful Amy. Such a great thought to look up and not around. You have many prayers.

20 11 2011
brian Murphy

Love . . . .

20 11 2011
Maija Kibens

Amy, you show us how wonderful and powerful we humans really are, in our soul of souls. Robust is a perfect word here, too. Beautiful photography and awesome story, quite an experience to carry with you and guide you. I will remember your sister’s words. Thank you.

20 11 2011
Marie Petrides

Inspiring words that truly touch my heart. Amy your words bring both light and hope into my life. Thank you for sharing your deepest feelings. I believe in my heart that God is good and He will always provide.Happy Thanksgiving to you and your beautiful family and those of us who are on this roller coaster ride. Will continue to give thanks for all our progress in fighting the fight…..wishing you the best…..Marie

20 11 2011
Kristi Kahl

Love Julie’s words! We all should look up and be thankful everyday we are here!

20 11 2011

That was beautiful Amy! Thank you for sharing your stories! Always.
Just read the Freepress article on you and your family. Superbe!
Stay strong Amy and keep the Lights on…

20 11 2011
Paul Vachon

Love is the most powerful therapy there is.


20 11 2011
Mary Goedert

Beautiful, beautiful post full of hope and energy! I loved it…..

20 11 2011
Sandy Sherman-Sarlund

I get it. I had the same experience sitting in church after I “lost” the boys. No one could believe that I was so calm when I went into preterm labor with the girls the same week that I had lost the boys. I made it through & have two beautiful girls & I believe that you will make it through too. You are a true inspiration to everyone that you have met or that has read your posts. Not only will you survive but you will make someone elses journey easier because of what you have been through. You are surrounded not only by love from family & friends, but His love. I am Thankful for you my friend, I think & pray for you often.

20 11 2011

I just read the article in the Detroit Free Press and want to thank you for sharing your story and bringing a greater awareness of the struggle cancer brings for all those that suffer (patient, family, friends). God bless you as He guides you through this and may you and your family know the comfort that only He can offer. You will be in my prayers.

21 11 2011
Jennifer Bopp Stegbauer

Robust. Amen. When you know, you know.

21 11 2011

So beautifully and movingly written…you continue to be in our prayers.
Kris and Bill Ritter

21 11 2011

God bless you, Amy – you are an inspiration. I lost a grandmother and an aunt to breast cancer and another one of my aunts is beating the odds and surviving after a lumpectomy. I look forward to reading more of your thoughts.

21 11 2011

I just read your article in the Free Press. Your story touches me on so many levels. I’m an Amy too. I’m a breast cancer patient too. My sister and I are both BRCA1+ as well. What touched me most deeply about your story was your worry about if you’ve passed this gene to your son. I have twin daughters and I have this same worry every single day. They haven’t been tested yet (they need to be mentally ready before testing) but they are aware of their risks, do regular BSEs and get screened accordingly. The fear, the guilt, the panic I have in thinking about my having passed down a faulty gene tears me up regularly.
From one Amy to another, I am sending you all the support and good vibes I can

21 11 2011

You may see the light, but YOU are the brightest light and greatest inspiration to those around you.

How pleased God must be to have you help others see the light.

21 11 2011
Debbie V

What a beautiful photo.

22 11 2011
Amy Leyden

I just read your articles in the Free Press. Your blog today was wonderful and full of hope. God is with you always!! He cries when you cry, he rejoices when you do. He loves you and will carry you on this marathon that you didn’t sign up for. My prayers will continue to you and your family. God bless you always!! Amy L.

23 11 2011
Mark Robertson

Enjoy a ROBUST Thanksgiving with your family. Hugs.

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