“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

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“I’m Gonna Love You Through It.”

14 10 2011

A couple of times early on after my diagnosis, Don called me from work to say he’d lined up a sitter for Theo and that he’d like to take me out to dinner. Just the two of us.

Sounds romantic. And it is. Except.

Except that I was gripped by this terrible, irrational fear that he was going to tell me he couldn’t do this anymore, go along with me on this journey.

So, when we got to Carrabba’s and I was looking like a deer caught in the headlights rather than a wife out with her husband on a Friday night, he was confused.

“What’s wrong?” he asked once we were seated in our booth. “Did you want to go somewhere else?”

I stared at the table for a moment, then worked up the courage to say, “I’m afraid you’re going to tell me you can’t do this anymore.” And how could I blame him, really? This, my second cancer diagnosis in five years, the first coming when Don was just 32, me, 37.

Don reached across the table and covered my hands with his.

“I just want to have dinner with the woman I love,” he said. “I’m not going anywhere.”

It isn’t all that irrational if you look at the statistics — as many as 50 percent of marriages dissolve after a cancer diagnosis.

But we all know that when you’ve got the Real Deal — a hubby like mine — statistics are bunk.

It was silly. But I was scared.

A few days ago, Don sent me the most beautiful music video by Martina McBride that captures what this whole journey is all about. Then, this morning, my neighbor, Sue, sent it to me as well.

Me and my hubby, enjoying a ride on our pontoon boat. I just watched it. Again. And cried. Again. But they were very happy tears and a reminder that while the journey is tough, so much of what comes out of it can indeed be beautiful.

It is amazing. But a word of caution before you press “play” — grab a box of Kleenex first. (Click on Martina McBride’s name, above, and it will take you to the video.)

Copyright 2011, Amy Rauch Neilson





Bright Lights, Big City

27 08 2011

Theo waking up to the Windy City on his sixth birthday. Photo by Amy Rauch Neilson.

Theo woke up on the morning of his sixth birthday, August 22, 2011, threw open the heavy room darkening curtains and the whisper light sheers behind them, and peered out the window in awe and amazement.

Twenty-three floors below, the city of Chicago was wide awake and had been for hours. Tourists and city dwellers alike were bustling to and from their destinations. As for us, we, too, had things to do, places to go, and yes — even people  to see!

Our plans for Theo’s birthday were to find an awesome breakfast spot, hop on a water taxi and spend the day at the Navy Pier. Check, check and CHECK! We learned of a breakfast place just a few blocks from our hotel called The Yolk. I LOVED it — from the bright, mustard-colored decor to the outside terrace where we were seated, and yes, of course, the MENU! Think cinnamon roll french toast with a side of fresh blackberries, blueberries and strawberries. I also had the best glass of freshly-squeezed orange juice of my life — so good I ordered a second! And I’m not even a big fan of orange juice.

Pure heaven.

Next, it was off to the riverfront a few blocks away to catch the water taxi. How cool that in Chicago, you can travel by foot, car, traditional taxi, or water taxi!  Theo wanted to sit on the top deck of the boat, where the summer breeze rippled through our hair and the sun warmed our faces.

We got off at the first stop and began wandering the Navy Pier. There’s the famous Ferris Wheel — which I happily rode by myself, as both Don and Theo are wary of heights. A miniature golf course on which each of us had a hole-in-one! The Children’s Museum and Store, where Theo spent his birthday money.

Though I have had the privilege of traveling across a good part of the globe, Don and Theo are newbies. Neither of them had ever been to Chicago. For Don, the biggest city he’d ever seen was L.A., many years ago, when he was there on business, not pleasure. He spent most of his time in buildings, rather than outside, taking in their enormity and majesty. So, truly, they were both new to Big City Life.

But why the quest to share places near and far with my family? Couldn’t we accomplish many of the same goals closer to home?

Yes. And no.

Yes, because we live in a beautiful place where opportunities to embark on an adventure and enjoy family time together abound. And we consciously take advantage of that on a regular basis, be it a trip to the Cider Mill, a boat ride, a board game on the family room floor.

No, because there’s nothing like being away from home and the daily responsibilities and distractions of dishes, laundry, pet care, and discovering, together, all this wondrous planet has to offer. That’s how I grew up, and it’s what I want to share with both Don and Theo.

Some of the best memories are the times I traveled with my family when I was growing up — my parents and my sisters, Julie and Lisa. We saw the Grand Canyon, Hawaii Volcanoes National Park (I still have a piece of black lava from that trip), New York’s Central Park from a horse-drawn carriage, San Francisco’s Golden Gate Bridge.

But perhaps just as important as the what we saw is the why we saw it.

My Mom was first diagnosed with breast cancer in May 1973, when I was four years old. My Dad, who, along with two of his brothers, owned Rauch Brothers Paving Co., often worked long hours in his quest to make our family’s life easier than the one he’d experienced alongside 11 brothers and sisters in the years following the Great Depression.

There was nothing more important in the world to my Dad than his family. And so, when my Mom was diagnosed, he took a serious look at the long hours of work he put in to build his company. Then, one day, he sat us down and told us this: No matter what,  from this day forward, we are going to take at least one family vacation a year, every year, no exceptions.

And we did.

That’s been my philosophy and my intention for my own family, even before my first breast cancer diagnosis of Stage 1 in March 2006. After that diagnosis, it became even more imperative to me. And I’m sure I don’t need to point out how the news of my recurrence this past January accelerated my desire.

I have the desire to share the wonders of the world with my family, sans the panic of doing it just because I’m currently undergoing breast cancer treatment. I believe from the very core of my being that God has work for me to do on this planet, that I’m going to go into remission, and that I’m going to be here for a long time to come.

Still. Time passes quickly, and if we don’t set intentional goals for ourselves, too often, we look back and see the missed opportunities. Our goals for ourselves, for our families, have to be intentional and conscious.

When Theo was born, Don and I decided that every year, at the very least, we would plan a family get-away. Now that he is in school, our tradition is to plan at least three nights away together as a family in the weeks before the first school bell rings.

Some of the people in our lives asked us why we would do such a crazy thing — travel to Chicago the day after Theo’s big birthday bash — with my cancer diagnosis and tough chemo regimen. I think it’s also safe to say that though others may not have articulated it, it was on their mind. Why now? Is it safe for Amy’s health? Isn’t it just going to wear her out? Can you really afford to be off galavanting in another city, with the financial responsibilities of medical bills on top of Amy’s reduced ability to work?

The real question is: Can we afford not to?

My Dad, although a good steward of our family’s finances, also used to say that you can always make more money. But time spent and experiences together — those are priceless.

Indeed.

Copyright 2011, Amy Rauch Neilson





Where to Find Financial Assistance

18 04 2011

If you’ve ever been through cancer treatment — or are close to someone who has — you have likely witnessed not just the physical and emotional strain of the disease, but the financial fallout as well.

Thank God there are lots of organizations out there who have made it their mission to help cancer patients navigate these rocky waters. Good people. Really good. I know because I’ve talked with many of them first hand. They are top-notch, compassionate, and willing to help in any way that they can. And they’ve offered me help. Real help.

My blog post for The Pink Fund this week is dedicated to those organizations and people who are devoted to reaching across that great divide, grabbing hold of a cancer patient’s hand and helping to guide him or her to the other side of impending financial crisis.

If you or someone you know is battling cancer and needs financial assistance, be sure to pass my blog post from The Pink Fund on. You’ll give them two gifts — the chance for help when they need it most and the opportunity and ability to focus on Job #1: Getting Better.

Copyright 2011, Amy Rauch Neilson





T-9… And Counting.

2 03 2011

The beautiful breast cancer-themed -- and quite cozy -- blanket up for auction. Photo by Amy Rauch Neilson.


You wouldn’t believe what’s been showing up on our doorstep since my breast cancer diagnosis Jan. 12.

Lake Michigan sweatshirts — one each for me, Don and Theo — to keep us warm. A package of Be Well Red Teas, chocked full of antioxidants and herbs to help me detox my body after chemo. And on their way? Some moonstones from my new bff, brilliant author and fellow breast cancer survivor, Laura Kasischke. (We’ve got big plans on tap once I’m all better. But that’s all I’m gonna say about that for now.)

One afternoon, the postal carrier brought a red and white Staples box to the door. I thought, What in the world did we order from Staples?

Nothing, as it turns out.

And that was a good thing. A very good thing.

Because in the package was a beautiful, hand-crocheted blanket like the one in the picture. Like the one, but not the one. I love you all, but I’m not giving up MY blankie!

It was a surprise from my cousin, Mary Dougherty, who not only made it by hand, but also prayed over each and every single stitch. Now that is powerful! (The new blankie up for auction wields that same power!)

It quickly became the item to swipe and run off with at our house. I’d be looking for it, thinking I absentmindedly set it someplace, and then I’d come across Don or Theo, snoozing happily beneath it. Sigh. How can you take a blankie from a Little Man, or a Grown One, for that matter? I can’t do it. So, I waited my turn. I also had a refresher course in Playing Nice and Sharing. We’ve settled for using it together on the nights when we don’t have quick access to a referee.

The colors are fab — the hot pink stripe gives it some kick. It’ll be there on March 18, at the Bowling Benefit and Silent Auction. Wonder who will be taking it home?

Don’t forget — you can get all the info you need about the Bowling Benefit and Silent Auction under the “Events” Tab on my blog. If you still have questions, please contact my bff Kristi Rugh Kahl, at kristikahl@comcast.net. She’s officially In Charge of this Event — not to mention, the fabulous and talented Bean Counter for Team Amy!

Don’t like to bowl or don’t feel like it? No worries! You are welcome to come and hang out, chatter, laugh, catch up, peruse the Silent Auction items.

Oh. And the T-9? Yeah. About that. That’s how many days you’ve got before you MUST be registered to bowl!

More later, right here. For now, I’m off to nap. Yesterday’s chemo was nothing short of BRUTAL and I promised my hubby I’d rest this afternoon. I’m off to make good on that promise.

Copyright 2011, Amy Rauch Neilson








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