Guest Post: The Story Behind the Story

8 11 2011
By Kristi Rugh Kahl
A few weeks ago, Amy’s husband, Don, was driving home from work in his pick-up truck when he first heard “I’m Gonna Love You Through It,” by Martina McBride, on the radio. He was so deeply moved by the song that he had to veer over to the side of the road afterwards and pull himself back together.
The next day, he forwarded the music video to Amy with a simple message: You need to watch this, babe. Amy did, and her reaction mirrored Don’s. Tears flowed and she found great strength in the knowledge that, like Don, so many people everywhere stood strong in this fight together with their loved ones, right by their side, every day, every moment, every surgery and treatment.
“I can’t imagine what it would feel like to have so many people gather around you to release lanterns of pure white light heavenward,” Amy said. I decided it was time for Amy to experience it for herself. This is the inspiration behind our upcoming benefit, Sky Lights of Love, December 3, 2011, at the Van Buren Township Lookout Point, Van Buren, Michigan. No matter where you live:

You can Participate!

  • Purchase a Lantern, and join us as we gather together to release hundreds of lanterns of light over Belleville Lake in Amy’s honor ! Lanterns will be distributed when you check-in at the event.  Lanterns are available by pre-sale onlyPurchase Lanterns by November 20, 2011.  No Lanterns will be sold at the door.
  • Can’t be there? You can still purchase a lantern, and we will release it on your behalf.
  • You can make a donation to the event here!
We have already been pleasantly surprised by the number of lanterns sold today and donations made for the Benefit — just hours after we announced it yesterday. Thank you! We are off to a good start. We look forward to seeing as many of you there on Dec. 3 as possible!
Don’t forget to check out the Martina McBride video. Not only is the song gorgeous, but it will give you a good visual of just how amazing and beautiful these lanterns are as they soar through the night sky.
Copyright 2011, Kristi Rugh Kahl
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The Gift Is The Present

5 10 2011
Monopoly Junior — one of Theo’s favorite games. Photo by Amy Rauch Neilson.

Where have I been?

Thinking. Pondering, Wondering. Questioning.
The last 10 days or so have been particularly harsh.
I lost a good friend, quite unexpectedly, to a brain tumor.
I lived through a couple of days while doctors ruled out ovarian and uterine cancer in my sister, Lisa.
And I’ve been giving a great deal of thought to my niece’s surgery next week. As a carrier of the BRCA 1 gene, and the daughter of a two-time breast cancer survivor, she has opted to take the preventive measure of having an elective double mastectomy and reconstruction.
So many times in the last couple of months, since we learned her surgery date, which, ironically, would have been my Dad’s 76th birthday, I’ve wished. I’ve wished that I could change things, that her risk of developing breast cancer without taking this drastic step wasn’t 88 percent. I’ve pictured myself running into pre-op — just moments before the doctors whisk her off into surgery — with the answer, the cure, whatever it would take to give her a surgery-free, cancer-free life, without the emotional and physical pain of the surgery.
But I don’t have the answer. No one can offer a more reliable preventive step than what she is about to undergo next week. And so we move forward in the realm of what is current scientific reality — this is the best we can do, she can do, for herself, her husband, her brand-new baby boy, her family. It’s what must be done. But it doesn’t make it any easier for any of us.
I so hoped and prayed over the years that we would find a better way before it was her time. But we haven’t, yet.
We will. Someday — and I believe it will be in my lifetime — we will have a better answer to genetic breast cancer prevention. I picture myself far down the road, decades from now, a grandmother, telling my grandchildren the story of what we had to do to save my life, my sisters’ lives, my niece’s life, all those years ago. The surgeries, the treatments, the frequent scans and doctor appointments. I picture the shock on their faces as they hear the stories of the harsh reality that was genetic breast cancer early on in the millenium, much the way I recoil when I hear the stories of the best medicine had to offer in the 1920s, 1930s and beyond.
We’ve come a long way, and we’ve got a long way yet to go.
But I know we will get there. Medicine has already made amazing progress, with new discoveries every single day that will impact our present and our future.
In the meantime, I try to be aware of the place I am, wherever that may be — walking a trail with the crunch of fall leaves beneath my feet, at the Tiger’s Playoff Game #3 with my bff Jodi Wolford Krueger, watching as Justin Verlander strikes out batter after batter, on the floor with my son, Theo, and husband, Don, playing Theo’s favorite game — Monopoly Junior.
The squeal of Theo’s belly laugh each time one of us lands on “his property” is a beautiful sound. You can’t help but light up with joy when you hear it — even if you do have to hand over your Monopoly cash.
The gift really is the present and one of the best gifts we can give ourselves is to stay there, to be present, to create an awareness of the moment we are living in, and all of the beauty that is there before us to enjoy, lest we miss it.
It’s not realistic or possible 100 percent of the time. That much I know.
There will be times when each of us must grieve a loss, or wonder why life has put something undesireable in our path, or in the path of someone we love deeply.
There will be those times. I’ve been experiencing quite a few of them lately.
They’re tough. Grueling, even. But we must not let them rules our lives. We can’t change them, but we can choose how we respond.
We must make a conscious effort to truly be in the moment whenever we can, taking in everything that is all around us, stretching our senses to the very brink, whenever possible, whether we find ourselves skiing a Black Diamond run or listening to the belly laugh of a six-year-old child.
Copyright 2011, Amy Rauch Neilson




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





Oh, Great Crappy Day!

14 04 2011

Today, I felt physically horrible. Yet, great things happened.

Physically horrible because not only are my white blood cell counts down — which meant Don has had to give me shots of Neupogen the past two nights, the injection that helps my white counts to recover, but makes every bone and muscle in my body ache in the process.

This Chemo Round, there’s also the added complication of a low Hemoglobin count. Tuesday’s chemo was a game-time decision; the doctors considered my counts before finally deciding to go ahead with my infusions. I was given an extra infusion of a drug called Procrit on Tuesday along with my standard chemotherapy drugs, in the hopes that my counts will recover and I will not need a transfusion.

But speaking of great things, I was humbled and deeply touched by the number of people who stepped forward yesterday and today to offer to roll up their sleeves and donate their blood for me, in case I do need a transfusion. Don’t ever bother to tell me there aren’t a lot of wonderful, giving people in the world, because I won’t believe you. Not for a second. I’ve seen way too much to the contrary to ever believe anything else.

And on to more great things — today, I heard from television, print, and radio media regarding upcoming interviews to help get the word out there about my story, the unlikelihood of this diagnosis after all of the preventative measures I took and the aggressive treatments I underwent, and the hope that this information will help to save lives, many lives through better methods of self-examination post-mastectomy as well as monitoring.

I have dreamed of starting a foundation for more than two decades. I wasn’t sure exactly what shape it would take, but I’ve always wanted to find a way to help people on a large scale. I think the pieces of the puzzle of just how that will happen in my life are beginning to fit together.

I had the good fortune to end up spending more than two decades as a financial writer/editor, which means I have acquired a good understanding of investment vehicles and how they work. My plan is to use this background down the road to manage the financial end of my foundation to help all donations and revenues to grow and thrive so that the funds can help as many people as possible.

I see the foundation as growing out of http://www.itsinthegenes.org in a multi-faceted way. I have big plans, many of which I am already moving from the planning stages into the actual implementation of the ideas.

It’s all, always, in God’s time. And He, no matter how confusing or difficult the circumstances in which you find yourself, is always right.

Copyright 2011, Amy Rauch Neilson





Status Update: Positive News!

11 04 2011

Yes, I know you must feel like yo-yos. I do, too.

But the meeting with my oncologist today went very well. What she said made a lot of sense. And I trust her and her insights and medical knowledge. She is a good egg.

I was accompanied by my husband, Don, and sister, Lisa. We covered all the bases, got all our questions answered, such as:

Yes! the CT Scan really does indicate shrinkage in the four lung tumors! Yes, it is entirely possible that the three spots showing on my liver are benign/hemangiomas! Yes! There are lots and lots of treatments available and for now, there’s no need to worry about that, as this one is working!

I’m wiped out at the moment, but wanted to post and say, Yes! I think we are indeed headed in the right direction!

More later…promise. This takes a lot outta a girl.

Copyright 2011, Amy Rauch Neilson





Status Update: Doctor’s Office

11 04 2011

At doctor’s office waiting to see my Oncologist and hoping for answers. Also hope I don’t start sobbing. I hate when I do that.

I smell hyacinths which remind me of Spring and miracles. Maybe I’ll pick some up on the way home.

Copyright 2011 Amy Rauch Neilson





And I’m Off and Running! (Chemo, the Day After)

2 02 2011

OK, maybe more like running, collapsing on the bed, sleeping, getting back up, running some more. Running just my natural state of being, so that’s actually good news. It’s my “normal.”

Yesterday’s round of chemo was, in keeping with the racing theme here, a trifecta. Gemzar and Carboplatin were first, followed by that magic elixir, the PARP Inhibitor BSI-201.

Tuesday is my longer day. It was about a 4 1/2 hour infusion. Friday I will get my second dose of the PARP Inhibitor, and that will take only about 1 1/2 hours. Chemo will continue on a Tuesday/Friday regimen, with labs drawn on Mondays, for two weeks. Then I’ll be off a week, repeat.

No one knows for how long I’ll be undergoing chemo. It’s different for everyone. Right now, it looks like it will be about four to six months. But, I will go through body scans at regular intervals to see how effective these medicines are. Hopefully, they will put me into remission very quickly.

I got the call about my lung biopsy results from my oncologist, Dr. Dana Zakalik, about 10:15 yesterday morning. I was scurrying about the house, trying to help my sister Julie get her luggage packed and grabbing my iPad and a blanket for chemo, when the phone rang.

My gut told me that the biopsy results would just confirm what we already suspected — that the breast cancer had spread to my lung. The results were positive; that IS indeed breast cancer in my lung. Looks right now like it’s just my right lung, and that it has affected two of the lobes. And yes, this takes me to a Stage 4.

My next step was to find my sister, who was in the shower, and tell her, “I need you now!”

She shut off the water, still covered in soap lather, wrapped herself in a towel, and threw her arms around me.

I couldn’t speak. My body was vibrating from the wracking sobs.

“Is it what we thought, baby?” she whispered as she rocked me back and forth.

I nodded. We moved to the edge of the bed in the guestroom and sat down. When I was able to compose myself well enough to speak, I said, “You can’t let people forget me when I’m gone. Pleeassseee don’t let people forget me. People always say they’ll never forget you, but then their lives get busy, and then…”

I told her my wish would be that she and our other sister Lisa, my nieces Natalie and Emily, all of our family and friends who wanted to, would find a way to use my name and my journey and battle to further the cause, to move ever closer to the day when this disease will be eradicated. When it would no longer be allowed to run about, pell-mell, wreaking havoc and wrecking lifes. I said, “Something like Susan G. Komen’s sister promised Susan — and then carried out.”

I never have been one to do anything in a small way. As my Dad always told me, “Shoot for the moon, Aim. And even if you don’t reach it, you’ll still be among the stars.”

Julie promised me. She promised me that they would work together to come up with the perfect idea — the one that would help the greatest number of people, in my name. So, I wouldn’t be forgotten, and I could contribute to this cause long after I’m gone.

But that is a conversation that can be tabled for a while. Months. Maybe even years. The PARP Inhibitor could not only melt away the cancer cells that are present, but would put and keep me in remission. And there’s a very good chance that this is exactly what’s going to happen. Maybe, in this best-case scenario, I’ll be around to lead this project, whatever it turns out to be, whenever it’s my turn to carry the torch for this cause.

So, how does yesterday’s news change things? It doesn’t. Not, at least, in terms of my treatment protocol. It did pull me down mentally for a little while, an hour, maybe two. But I picked myself back up and was off to my chemo treatment. Happy. Happy to have the chance to get the drugs that may save my life.

Does it change my prognosis? Probably not in any way that’s worth measuring. This new invader, afterall, announced its intentions from the get-go. Now, I’m voicing mine. I will live. For many, many, many years. I will be by my husband’s side to raise our five-year-old son into adulthood, and beyond. I will lobby for this cause from the depths of my very being, in every way that God asks me to, in every direction He leads me.

I made a new friend in the chemo chair next to me. Her name is Alicia, and like me, she is the mother of a young child. She’s brave and I know she’s going to make it. We’re now also on facebook together, and might I shamelessly add, she’s a new subscriber to my blog. PR for this cause, afterall, is a 24-7 job. Cancer never sleeps.

I feel OK today. A little nauseous, dizzy, fatigued. Not too bad for the day after chemo. I was just going to post a short update and here I am, 892 words later. I’m tired. Back to bed for me.

— Amy Rauch Neilson








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