“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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IMs from God?

30 06 2011

This little box of Theo's reflected a mysterious rainbow. Photo by Amy Rauch Neilson.

I was crying when I called my sister-in-law Carrie the other day. A couple of months ago, she made me a CD mix to get me through the toughest moments. The very first song is Katy Perry’s Fireworks. Carrie picked that one because she knows the Fourth of July is my favorite holiday. And she loves the lyrics.

When I called her the other day, I said, through sniffles and sobs, “What if there’s only a hurricane for me, and no rainbow?”

Without hesitation, she said, “The rainbow is already out there, sweetie. You just can’t see it yet.”

“Promise?”

“Promise.”

She knew I was referring to these lyrics:

After a hurricane comes a rainbow

Maybe your reason why all the doors are closed

So you could open one that leads you to the perfect road

We talked a lot about that rainbow, the one that will appear after I make it through the hurricane-force winds that blew into my life following my Stage 4 breast cancer diagnosis in January.

My fear, I told her, is that after the hurricane, there isn’t going to be a rainbow. Just devastation.

But Carrie won’t hear of this. She doesn’t tell me there’s a rainbow out there because it’s what she thinks I want to hear. She tells me this because she believes it to the very depths of her soul. Never, she says, has she been so certain of something.

This calmed me and after a few minutes, I was able to pull myself back together. I had to. Theo was at summer camp and it was time to go and pick him up.

As I was backing out of our driveway, our neighbor, Dave, walked up to my car. I rolled down the driver-side window, offered him a handful of Cheez-Its. He looked at me and said, “I saw you the other day. You weren’t looking very happy.”

We share a narrow, one-lane road with three other houses, a straight path that leads to the lake like a spoke on a wheel. It’s a private road, which means our mailboxes are at the end, where our street meets the service drive. So, getting the mail means a tenth of a mile trek to the end.

As I was scrolling through the moments when Dave might have observed me, I thought about a day last week when it was dreary and drizzling and I’d made the trek for the mail. The neighborhood was quiet; the kids inside doing puzzles or watching movies on a rainy summer day. A few tears on my cheeks could easily be mistaken for raindrops, should anyone cast a glance out the window.

I was just having a moment. And Dave, who has lived next door for the dozen years since we moved in, reads me well.

“You weren’t looking too happy when I saw you last week,” he said.

I looked him in the eyes and said, “I’m afraid…” But I couldn’t finish. I waited a minute, then tried again.

“I’m afraid I’m going to die,” I said, this time staring straight at the steering wheel.

“You’re not going to die,” Dave said. “You’re going to outlive me.

“You have changed the way I think. You don’t realize how much you influence people, how what you say and do changes the way they think. That’s really powerful.”

I thought about that for a minute, trying to figure out what I do or say that makes that big of an impact. Then I took his words and deposited them into my heart.

Earlier in the day, I’d come across this little box filled with shark’s teeth at a gift shop. I thought of Theo and knew it’d be two bucks well spent. I gave it to him when I picked him up at camp. He was ecstatic and for the rest of the day; it was like nothing else existed save this little, tooth-filled clear plastic box.

Then the strangest thing happened. I was making dinner and Theo called me into the family room.

“Look, Mommy,” he said, pointing to the lid of his little box. “There’s a rainbow.”

Indeed there was. The plastic lid of this tiny box was acting as a prism to the light streaming in through the windows, reflecting the colors and shape of a rainbow. What were the chances, on this day, at this moment, in this way? If the conversation with Dave, the observation by Theo, are not Instant Messages from God, then what are they? Dave said my words and actions are powerful, but they pale in comparison to the messages coming from above.

Maybe all the doors closed so God could lead me to the perfect road.

And yes, I do believe there will be a rainbow.

Copyright 2011, Amy Rauch Neilson





Still Nothin’!

20 02 2011

Don didn't even ask me why I needed him to take a picture of the BACK of my head!

My husband Don and I have decided this matter of hair has a theme. Still nothin’, we say to each other after doing a “hair check” first thing in the morning. He’ll also sing it to me whenever he sees me doing the “little tug” (hey, maybe I should trademark that move or something) to test the strength of my roots. Still nothin’, just the way Jo Dee Messina says it in her hit, My Give a Damn is Busted.

Indeed, my gutsy moved paid off yesterday. Calling and making an appointment for an up-do earlier this week with my stylist Jennifer from The Perfect Image Salon in Belleville didn’t jinx me in the least. In fact, it saved my spot — Jennifer is one busy girl — and not only lifted my tresses, but also my spirits.

Jennifer was shocked when I walked into the salon yesterday. She knew I’d already started chemotherapy treatments.

“I saw your name on my schedule — followed by the notation: “Up-Do,” and I had to look twice,” she said. “I couldn’t believe it!”

Believe it. It’s Sunday morning and I’m closing in fast on that Tuesday if-you-haven’t-lost-your-hair-by-now-you-most-likely-won’t deadline.

The wedding was a beautiful affair, held at the Royal Oak Music Theatre, the same venue where I modeled for the Bras for a Cause Benefit September 18, 2010, and where I’ll be for this year’s Bras for a Cause, September 17, 2011.

The bride, Pamela, and I share something very important in common — we both love the color yellow. Sunshiny, bold, bright yellow. How can you look at the color yellow and be anything but happy?

Pamela has a flair for style and an artistic bent. The centerpieces were jars of all sizes and shapes, collected over the past few months after the final bit of jam or the last pickle, the labels removed, the glass scrubbed. Each was filled with a different variety of yellow flowers. I chose one that had surely once been called home by several dozen baby gherkins, filled with tiny, fragrant flowers whose name I just couldn’t put my finger on.

I set them on my nightstand and drifted off to sleep. This morning, it came to me the moment I opened my eyes. Our room was filled with an enchanting scent.

Honeysuckle. Those delicate, bell-shaped blossoms were Honeysuckle! That’s long been one of my favorite scents for body lotions and bubble bath, but I don’t recall ever having seen it in a bouquet.

I breathed in deeply. It would be just like God to create a flower that’s not only the most perfect color in the universe, but whose scent is nothing short of heavenly.

Copyright 2011, Amy Rauch Neilson








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