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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Guest Blog: Sky Lights of Love Benefit December 3, 2011

7 11 2011

By Kristi Rugh Kahl


Imagine if you went to your job every day and it made you feel sick to your stomach. Not just the thought of going to that dreaded place, but so physically sick that you couldn’t get off of the couch or out of bed when you got home. Your head pounds and you feel queasy. It’s difficult to eat, but you know you have to in order to keep up your strength. You’ve got to go back to that job. Your survival depends on it. Then imagine that after two weeks of doing this, you wait for your paycheck thinking, OK, I guess it’s worth it. We’ve got to pay our bills. We have a little boy to feed, a household to run.

But the paycheck never comes. Yet, you have to keep going back, two weeks on, one week off. Repeat.

Sad but true, this is the life of most cancer patients on chemotherapy. Not only are they unable to work, or, like Amy, only able to work limited hours, but the bills continue to pile up. The old bills — like the utilities and the groceries — and the new bills: medical. Amy is blessed to have health insurance. But even with that safety net, there are copays and percentages that have added up to thousands of dollars since her January 12, 2011 diagnosis.

Amy’s schedule is no different.  Every two weeks of chemo (what the doctors call “a Round”) takes its toll on her body and puts a financial strain on her household.

A couple of weeks ago, one of her two employers called to let her know that they could not wait any longer for her to get better. Yes, they loved her writing and editing work and found her to be very talented in both arenas. They had recently told her she was “the whole package” — and they meant it. She was offered other writing work that didn’t have the hard and fast deadlines that her editing work for the company required. She took them up on that offer, and understood, but it broke her heart to lose the copyediting position she had, working with a team she loved.

When she called me to tell me what had happened, one of the last things she said to me during the conversation was this: “It was so very hard to know that I can do the job and do it well. When I was healthy, they loved me and I loved working for them. All those years of education and various jobs in the trenches had paid off. Yet, that day, as I held the phone to my ear, I realized that while my mind wanted to scream, Don’t Replace Me! I can do the job! I want to do the job!, my body was telling me a different story. I knew they needed someone in that position who was healthy. Right now, that person isn’t me. And there’s nothing I can do about it besides keep going to chemo, keep praying and doing everything I know to do in order to get better as soon as possible.”

Yes, this is the price for survival, but it doesn’t have to be so hard if we all come together to celebrate her life and help defray her expenses.

When I first mentioned the idea to Amy, she loved the vision of a gathering of people and the lantern release over the lake. But she wasn’t, at first, comfortable with the idea of another benefit for her family. She didn’t want to keep asking so much of so many people. That’s when I told her that asking for help doesn’t mean you’ve failed; it means you’re not in it alone. And that is the theme of the recently released song by Martina McBride, I’m Gonna Love You Through It, that inspired this event (see more on this personal story about Amy and Don on the Events page).

In celebration of Amy’s birthday (November 29), we are hosting a benefit called Sky Lights of Love on Saturday, December 3, 2011 at the Van Buren Township Park.  We will gather at 4:30 p.m. and, at 6:00 p.m. sharp, we will release the lanterns from the Lookout Point over Belleville Lake — a place that is near and dear to their hearts.

The cost per lantern is $10 and the proceeds will go to the Amy Rauch Neilson Benefit Fund to help Amy with her ongoing medical bills and expenses. 

If you can’t attend, you can still participate by ordering a lantern. We will release it in your name or the name of a loved one.  Or if you’d like, please consider giving a donation. 

We all know times are tough, but they are even tougher if you are fighting for your life. As for me, the time is now for my bff Amy. Together, we can make it better by celebrating life and collectively lifting all of our spirits as we watch hundreds of lanterns filled with pure, white light rise up into the night sky. I hope you can join us on December 3, 2011!

Lanterns available by PRE-SALE ONLY – purchase by 11-20-2011
Purchase Lantern or Make Donation Below:

  • 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 only.  Purchase 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! 




Could the Future be NOW?

2 06 2011

Me, modeling the DNA-themed Art Bra I created along with my mother-in-law, at the Bras for a Cause event, Royal Oak Music Theatre, September 18, 2010. The PARP Inhibitor has proven to be particularly effective in BRCA gene carriers like me. Photo by Trish Baden MacDonald.

I’ve got Google Crawler working for me day and night, when I’m working, sleeping, at the infusion center, hoping to catch a ball at a Tiger’s game, making fruit-kabobs for my kid’s kindergarten class.

When GC finds something related to the BRCA 1 or BRCA 2 genes, the PARP Inhibitor — or any of the related key words I’ve sent it out into cyberspace to fetch, I get an alert in my e-mail box. I’m particularly excited about the one that came through today.

From the article:
“This drug is a very potent PARP inhibitor. It has already demonstrated very encouraging activity as an IV formulation and now we know that the oral formulation is also active. This potentially opens up many exciting opportunities for long-term treatment for cancer patients,” said Professor Hilary Calvert, Director of Cancer Drug Discovery and Development at University College London, UK, and a pioneer in the field of human cancer therapy with PARP inhibitors. “We know that PARP inhibitors are active in germline BRCA-mutant (gBRCA) tumors, and that this activity extends beyond this group of tumors into broader patient populations in ovarian cancer and may do so in other cancers as well.

“PF-01367338 is currently in a Phase 1 clinical trial examining the maximum tolerated dose of oral PF-01367338 that can be combined with intravenous platinum chemotherapy (the kind of chemotherapy that I am on) in the treatment of solid tumors. This program is supplemented by two ongoing trials, currently using the IV formulation: a Phase 1/2 study in gBRCA breast and ovarian cancer and a Phase 2 study in the adjuvant treatment of triple negative breast cancer (the kind of breast cancer that I have). Clovis Oncology intends to replace the IV formulation with the oral formulation in these studies.”

Now, some backstory.

One of the most miraculous phrases my oncologist uses in describing the war on breast cancer and how close we are to the end is her belief that breast cancer is already a long-term manageable disease, much like, in her opinion, diabetes and hypertension.

There are so many different breast cancer treatments out there right now that if one doesn’t work, there’s another go-to drug. And while you are holding the disease at bay with one drug, others are coming online. Not over the course of years, she’s explained to me, but in days, weeks, months. In fact, the PARP Inhibitor that is part of my current treatment — and has demonstrated to be particularly effective in patients who carry one of the breast cancer genes, as I do — only came online 14 months ago!

All of this is amazing news that gives breast cancer patients, even those in Stage 4 like me, a lot of hope that long-term survival — and a good quality of life during that survival — is not a pipe dream, but a reality. My doctor has told me numerous times that while she of course has no crystal ball, she believes I will live for years. We are not looking at a prognosis of just three, six, twelve months left to live. Even at Stage 4.

I’m thrilled that I was offered the opportunity for the PARP Inhibitor to be a part of my chemotherapy regimen, along with Carboplatin and Gemzar. The PARP Inhibitor is currently a Phase 3 clinical trial drug, one that Royal Oak Beaumont worked hard to be able to offer. One I am so very blessed to get.

Right now, the PARP Inhibitor is an IV-drug only; its oral form has not yet been proven safe. During the two out of every three weeks that I receive chemo, I receive a dose of the PARP Inhibitor on both Tuesday and Thursday. But my doc has known all along that its oral equivalent was in the works — and she’s kept me updated.

Today, the article that Google Crawler flagged for me details, among other things, another huge leap in the development of an oral form of the PARP Inhibitor. What makes this so exciting is that it means the future my oncologist sees could soon be upon us.

She told me a few months ago that someday, not too far down the road, patients like me will be going to the pharmacy with an Rx for the oral version of the PARP Inhibitor, and going home with pills to take it as part of our daily meds the way a patient with high blood pressure does now.

Imagine the change in my life, in the lives of other people with breast cancer, when drugs like the PARP prove not only effective, but become available in a pill form. Breast cancer is kept at bay, my life does not revolve around trips to the infusion center and days of nausea and fatigue. We reach yet another milestone in the war against breast cancer — and continue to rachet up the quality-of-life factor.

Even better, it seems there is a whole family of PARP Inhibitors coming online that give new hope for a better future not just for breast cancer patients, but prostate and other cancer patients as well.

I am certainly not a medical doctor by any means, but I keep myself a well-informed layperson. Check out the article. The future could be upon us.

My job is to hang in there — even on days like last Thursday, when I was sobbing as I waited for my ride to chemo, because I simply did not want to go. I did not want the infusion or the sickness that follows, that I already know all too well.

But my job is to go and keep on going, no matter what. To take advantage of the very best science and medicine has to offer while I await the next best. Until someday, my disease is in full remission and I’m able to keep it that way.

As I was walking to the ballpark Tuesday evening with my friend Jodi, I said, “You know, Jodi, even if this was the best we could do, the best we could ever do — two weeks on, one week off — I still have a darned good quality of life in between infusions and I’d take this gladly over the alternative, any day of the week.”

But my bet is, I won’t have to.

Copyright 2011, Amy Rauch Neilson





Status Update: Results Today

31 03 2011

I’ll go into HOW I finally got an appointment to get my results in a future blog.

Just know that after hours of trying, I finally found a way to get through. It emotionally and physically wiped me out, but I will not have to wait until Monday. No patient should have to go through that, least of all a Stage 4 cancer patient waiting for pivotal results.

I have an appointment at 3 p.m. today. So much hinges on the results of this first CT Scan since I began chemo on Feb. 1.

I’ll let you know as soon as I know.

Please pray for miraculous results.

Copyright 2011, Amy Rauch Neilson





Hats Off…Rhonda Traylor’s Story

12 08 2009

Rhonda Traylor and me, in the moments following our graduation from Antioch University McGregor, June 29, 2008

Rhonda Traylor and me, in the moments following our graduation from Antioch University McGregor, June 29, 2008


I met her in a sea of long black robes and mortarboards. I’d just come down from the stage, where I’d had the privilege of speaking in front of 3,000 people at The Schuster Center in Dayton, Ohio. It was June 29, 2008 and finally, after four years, the birth of my son and a battle with breast cancer, I was about to receive my master’s degree from Antioch University McGregor. It’s a day that was a bit surreal because there had been a time not so long ago when I thought this day might not ever come — in the days following my breast cancer diagnosis.

But it did. And I did it. Not only did I walk across the stage to receive my degree, but I did something that just a few years ago, I wouldn’t have thought possible. I told my story, my family’s story, the story of the BRCA 1 gene, before a crowd of a few thousand. (To read the Speech, “The E-Turn in Life: Being the Difference” in its entirety, see the Speech button at the top of the homepage.)

I shared just how our gene-positive status had impacted the women in my family, from my grandmother to my mother, my sisters, my niece. I shared the power and the wisdom that can be extracted from even the most difficult circumstances life throws at you — and that I do, indeed, believe it is my responsibility to reach as many people with my story as I can. I never imagined for a moment that some of my fellow BRCA 1 and 2 peers were sitting in the audience, listening to my words.

Then something even more amazing happened. I returned to my seat and the music for the processional began. A long line of graduates in flowing gowns and tassles passed me en route to the stage.

Suddenly, a young African-American woman stepped out of line. She walked the few short steps to my seat, stood in front of me, removed her cap, revealing her bald head, and whispered, “BRCA 1” in my ear. She gave me a hug, then quickly replaced her cap and made her way up the stairs and across the stage.

Following her lead, graduates began to step out of line on their way to the stage, hugging me and sharing a few quick words of inspiration. The outpouring of love and appreciation from my fellow graduates — many of whom were strangers — was one of the most amazing and powerful moments of my life.

I caught up with that young woman following the ceremony. Her name is Rhonda Traylor and she is BRCA 1 positive. On that day, she was in the midst of her battle against breast cancer.

“I didn’t know if I would be able to make it across that stage,” she later told me, as she was so fatigued by the chemotherapy treatments. “They had a wheelchair ready for me, in case I needed help. But I was determined to make it!” And she did.

Rhonda and I still keep in touch and I am thrilled to say that she has finished her treatment and is doing well. She is an amazing person — bright, funny, glass-is-half-full, even on the darkest of days. And how ironic that, that day, Rhonda thought I was the hero for my willingness to share my story.

But I, I have a different version of that day. It’s the story of a young woman fighting breast cancer who willed herself to make it up the steep steps and across that long stage to receive her diploma. That is a true hero. To Rhonda Traylor I say, “You go, girl!”





Support in a Sea of Pink

30 05 2009

friends4race2006
My life was such a whirlwind of doctors’ appointments, tests, prayers, hope, and pure terror that Spring of 2006 that when she called, it took me a minute to catch on. It was my friend, Mollie. “I want to form a team for this year’s Susan G. Komen Race for the Cure,” she said.

And I was thinking, “That’s great, but why is she calling me to tell me this?”

Then it sunk in. Mollie wanted to form a team in my honor, and the team members would run or walk the 5K for me.

I was really touched.

Mollie took charge of the whole event, from naming our team — Amy’s Walking Angels — to spearheading the fund-raising (we raised $1,000!), picking up our registration packets, and getting everyone organized among the thousands of other walkers and runners that June morning in Detroit.

I was not quite eight weeks out from my double-mastectomy/reconstruction surgery, I had just gone through in-vitro so that I could freeze embryos in the hopes of having a baby post-chemo, and I had just endured my first round of chemotherapy.

I didn’t have to be there. Of course everyone would have understood — and they would have gathered, ran, and walked in my honor that morning.

But I wanted to be there. So, when the alarm when off at 6 a.m. that Saturday morning, we threw on our official Race T-shirts, got into the car and headed for downtown Detroit.

I didn’t think I could walk the entire 5K that day, which left me with two options — the One Mile walk or a ride on the Survivors’ Trolley. I opted for the walk. That way, I could hang with my team for at least part of the time.

But something happened along the way — something quite magical. As the starting line faded into the distance, I found myself becoming more and more energized with every step. When our team hit the One Mile marker and everyone expected me to turn around, I surprised them as well as myself when I didn’t. I kept going. And I crossed the 5K finish line with them.

I’ve often pondered about just what gave me that extra surge of energy that day. And I’ve decided that there isn’t one answer — but many.

It was my friends and my family. My spirits were buoyed by their strength and support and selflessness.

It was the thousands of strangers I walked among. The supporters wear white, while pink is reserved for survivors. In my pink T-shirt and baseball cap that day, I was a member of a very special sisterhood. We recognized each other with a nod, a smile, a brief exchange of words, a simple “God Bless You.”

It was the exchanges between me and other team members — brief, private, but telling conversations where one friend revealed details of his father’s battle with cancer that he’d never told me before and another told me how, when he’d learned of my diagnosis, he felt like he’d been kicked in the stomach — and began training for the 5K. Conversations that you’d never imagine could happen amid a crowd of thousands. But they did.

What I saw and experienced that day was so powerful that it keeps me going back every year for my “fix.” This morning — my fourth year of participation in the Race for the Cure — was no exception.

Along the way, I stopped to take a photo of a group of young girls waving hot pink pom-pons who were cheering for the walkers. As I got closer and focused my camera lens, they noticed my pink survivor T-shirt and began cheering very loudly — just for me. I was so taken aback that my rarely-seen shy side came out and I actually blushed.

But, as I rejoined my group and continued the walk, it also served as a reminder that in the battle of breast cancer, we are never alone.








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