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! 
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Dark Clouds, Yes — But Don’t Overlook the Silver Lining

16 08 2011

Photo courtesy of: jittajack.blogspot.com

This is Week 2, Round 8 of chemo. That means I’ve now sat through 30 infusion days — and 120 total infusions — since chemo began Feb. 1, 2011.

Ugh. Yuck. Blech. Ewww. That’s how I feel after today’s chemo. I often have trouble with word retrieval in the hours following my infusions. My Chemo Buds notice this on Tuesdays — my hard chemo days — as the second infusion, Gemzar, makes me go pale and honestly, a little loopy. I sometimes slur my words and feel like a drunk who never had the pleasure of the cocktail — the chemo cocktail, yes, but not the Whiskey Sour that’s my standard order.

It feels like a bout of the flu coming on — headache, body aches, nausea. But I slept for a couple of hours this afternoon after I got home and it recharged me enough that I could eat a few slices of bread and a couple of peaches along with the antioxidant green tea that is super good for me and that I am drinking by the gallon daily. This little hiatis won’t last long — I need to hit the sack shortly. But first, some silver linings to share with you. A few of my favorites:

1. Support of Friends and Family. I keep waiting for chemo to be fun (I’m the eternal optimist), but so far, it’s disappointed me. I CAN say that it is really reassuring and supportive to have the many loving family and friends in my life who show up on time, drive me to chemo, sit there beside me, drive me home and tuck me into bed. Today, my Chemo Buddy was my bff Elaine Schultz. I enjoy the conversations with each of you and treasure you and your friendship. Not only that, studies PROVE that cancer survivors who are surrounded by a loving network of their peeps have much higher rates of long-term survival. Thank you.

2. Positive Test Results. My tumors have remained stable and/or shrunk every time since February that I’ve had a CT Scan. The latest one taken in the hospital mid-July showed the same results. That’s a LOT to be happy about!

If that isn’t enough, the way I FEEL is! The coughing linked to the tumors in my lungs stopped two months after chemo began; three months later, Don noticed that my stamina had dramatically improved, and honestly, I am feeling terrific. People have been noticing — people who haven’t seen me in two or three months. They’re surprised.

“You look really good,” they say.

I shrug it off and say, “Maybe it’s the tan?”

I mean, that seems like a reasonable explanation.

Nope. They’ve already taken that into account and they are sure I look better, healthier than just two or three months ago. Waaahhoooo!!!!!!!!

3. Amazing Blood Counts! This is a biggie. For the first time in many, many months, my blood counts were SO good today that I don’t have to do those awful, painful Neupogen (white blood cell booster shots) this round! They are worse than chemo, as I’ve said many a time. Very painful side effects in my bones (think rib bones that THROB) that last for 24 hours per shot, and the regimen calls for five days of shots. So, hooray for a small victory that is actually quite BIG!

My doctor attributed it partially to my changeover to a more healthy diet. It’s a slow but sure process, but I’ve already whacked most of the refined white sugar from my diet — replacing it with natural Blue Agave (available at most health food stores and quite good) that does not cause blood insulin levels to spike. I’ve got to keep my glycemic index in check. (For more on the glycemic index and cancer fighting foods, etc., see David Schreiber’s book, Anti-Cancer: A New Way of Life. I can’t recommend it highly enough.)

I’m also eating tons of fresh peaches now in season from our local orchard, raw veggies, whole grains, tomatoes and fresh green beans (raw) from my garden, and EEEK! I ate a mushroom yesterday. For those of you who know me, I’ve had a lifelong hate-relationship with mushrooms. They are one of the only foods I cannot stand to eat.

But.

But they are extremely beneficial cancer fighters — lots and lots of great, healthy properties. So, I’m gonna find a way to get them down. Eww. Ick. My close friend and Theo’s godfather Ken Bagnall tried to lessen the pain of my palate yesterday by covering a raw mushroom in spinach dip.

Still yuck. I nearly hurled. I compare it as being on equal footing with the one time I ate a huge, garlic and butter sauted escargot. That was 20 years ago and I swear, I need to bring it up in a counseling session sometime.

4. Back on Track. It is a victory in and of itself that I was finally able to get through a full round — four sessions — of chemo after all these weeks. I’d been off since the end of June due to low blood counts and the infection that hospitalized me. I am so grateful that I am back on my regimen. That really is a silver lining!

5. The End of Chemo is Near. Nope. I’m not holding out on you. I still don’t know when the end of chemo will come. No one but God knows that. But I do know that getting back on schedule means that I’mmmm bacccckkkk and heading in the right direction, AKA The Finish Line.

Let’s get this chemo thing over and done with ASAP so I can return to my regularly-scheduled life, shall we?

Copyright 2011 Amy Rauch Neilson





Status Update: Back to Chemo

9 08 2011

I’m just now back from a day of chemo. Tuesdays are always the long day of the week, with three back-to-back-to-back infusions. My blood counts were well within range, no fever, all vital signs were good. Whew!

I’m so very pleased that I was able to return to my chemo regimen and get back on my schedule of fighting and beating this beast. I’ve been off/unable to have chemo since the end of June. We are back on track!

My bff Jennifer Amprim Wolf just dropped me off at home. She sat beside me all day and I shared a new-found secret with her: there’s a room in the chemo infusion center with heat/massage chairs…today was a “slow” day, so we were able to snag that room — and the chairs! Score!

Jennifer is walking the Susan G. Komen Three-Day for the first time this weekend in my honor as well as for others who have fought or are currently fighting the breast cancer battle. Go Jennifer! She has trained long and hard for this weekend. Please send prayers of sustanance and good fellowship her way. What a trooper!

Someday very soon, I hope to be at a place where I can do the Three-Day alongside her and my many other friends who take on this challenge every year. I will be touching base with Jennifer over the weekend to see if I can pop in and walk beside her for a short distance. Seeing a sea of pink is always uplifting and inspiring, if not downright euphoric!

But until then, it’s off to bed for me so I can recover from today. If I get a few hours in, I may feel well enough to spend some time with Don and Theo this evening. Low-key time. Maybe Theo and I will be able to watch the second half of Scoobie Doo and the Lake Monster, which we began watching last night.

Thursday’s chemo will also knock me down, but not quite as hard. Rest, as difficult as that concept is for me, is what I must do now.

Copyright 2011, Amy Rauch Neilson





Tie Your Laces and Let’s Go!

28 03 2011
Don, ever my cheerleader and best friend, holding the sign he made for Amy's Walking Angels in 2008. Photo by Amy Rauch Neilson.

Don, ever my cheerleader and best friend, holding the sign he made for Amys Walking Angels in 2008. Photo by Amy Rauch Neilson.

I was diagnosed with breast cancer for the first time on March 3, 2006. And somewhere amid the flurry of tests and results, surgeries and treatments, my friend Mollie Finch pulled off something pretty extraordinary. She organized the very first team of walkers to represent me in the Susan G. Komen Race for the Cure: Amy’s Walking Angels.

The walk is a 5k, but there’s also a one-mile option for people who can’t go the distance. I thought I’d be one of those people that June day, as I’d started chemo just a week earlier.

My goal was to simply make it to the end of that first mile, Don and all of my teammates by my side, Theo, who was only nine months old, in the stroller.

But somehow, as I approached the one mile marker, I didn’t feel tired. I felt energized. I kept going. And I made it the whole way. I was elated.

There is something so invigorating about being surrounded by people who love you, who are walking in support of you, united in the effort to halt this disease in its tracks.

Mollie’s doing it again — organizing the team for the Amy’s Walking Angels component of the 2011 Susan G. Komen Race for the Cure on Saturday, May 21. The walk starts and ends at Comerica Park in downtown Detroit — we meet there round about 8 a.m. and we’re home by Noon. Sometimes, we stop in Mexican Town for lunch afterwards. I’d love to see you out there.

I’m even thinking of printing matching ItsInTheGenes.org T-shirts this year. It’d be a first for our team. If you’re interested in a T-shirt, let me know at amy@itsinthegenes.org and I’ll see what I can organize on my end.

Who knows what we might be celebrating that day? My first post-chemo scan is today at 2:30. Within a few days, I should have the results that tell me how effective the first three rounds of chemo have been. Please pray for something miraculous and completely unexpected — something beyond explanation. I hope my lungs and lymph nodes are completely clear and that my chemo regimen will be shorter than originally anticipated.

On the way home from chemo last Friday, this very subject came up between my friend Diane and I. I said, “Maybe my regimen will be shorter than we think!” And at the very same moment we looked at each other and blurted out, ‘June 1’ as an end-date! It was eerie and funny all at the same time.

As soon as I know my scan results, I’ll let you know. In the meantime, get your racing shoes on!

For more information and/or to sign up to be a part of Amy’s Walking Angels, contact Mollie Finch at molliefinch81@yahoo.com.

Copyright 2011, Amy Rauch Neilson





Because That’s How I Roll…

31 01 2011

Don't Call the Fashion Police. And anyway, they're tired of coming out here to give me citations.

I’d say it myself, but the Eurythymics do it so much better:

Would I lie to you?
Would I lie to you, honey?
Now would I say something that wasn’t true?
I’m asking you Sugar, would I lie to you?

Nope.

So, when I tell you that this is how I rolled over the weekend, it’s true. 37 times down the sledhill out back with my hubby, son, friends, neighbors, family.

It’s also true that I don’t/can’t/won’t be able to roll this way every single minute of every single day that lies ahead.

But I’ll be rolling this way a lot more than not.

That I can promise.

And no, I would not lie to you.

— Amy Rauch Neilson





Rapunzel…Let Down Your Hair!

27 02 2010

Me, sporting one of my wigs and a crown of flowers, with Theo at the 2006 Gaylord, Mich. Alpenfest

It took me nearly four years, but I finally did it. Yesterday. I donated all of the wigs, bandanas and a knit cap I wore when I was going through chemo. It wasn’t as easy as it sounds.

I came across them a couple of months ago, when I was cleaning out my closet. There was the wig with the long, thick blonde hair that I’d sometimes pull up into a ponytail or through the back of a baseball cap, the shoulder-length one with soft waves that had fooled everyone at my high school reunion, the sexy Marilyn Monroe platinum blonde one that I wore when I was feeling well enough for a night on the town.

As I searched a little farther back on the shelf, I saw all of the bandanas my cousin Christine had made for me — the wedgewood blue one covered in tiny silver stars, the bright yellow one with jewels sewn in the shape of flowers, the breast-cancer-ribbon pink one, and my favorite — the tie-dye one. At the very back, I came across the sable knit cap my friend Maureen had knitted for me over the course of the cold winter weekend when I’d first received my diagnosis. I took everything off of the shelf, packed it carefully and set it aside. I’d bring it with me to my next appointment at the Beaumont Breast Care Center.

Yesterday morning, I grabbed the bag and threw it in the car. I was off for my quarterly blood draw.

After my appointment, I stopped by the Resource Center. That’s where I met Ruth, the soft-spoken woman with the silver hair who oversees the Center.

“I thought maybe someone else could use these,” I said. As I opened the bag and began unpacking its contents, I found myself sharing moments from 2006. “I wore this tie-dyed bandana to a Tigers game in June, and here’s the wig I wore to my high school reunion. It did the trick — no one even realized I was going through chemo.

“This one — well, it made me feel sexy when my husband and I were out celebrating our 7th wedding annivesary,” I continued. “And surely someone could use this knit cap in weather like this,” I said, thinking of an older, bald-headed woman being pushed in a wheelchair I’d seen in the Cancer Center just a few minutes earlier.

Ruth listened intently and patiently as I made my way down to the bottom of the bag. There was a brief silence and then I looked into her eyes and, by way of explanation, said, “I’ve had this stuff for four years now, and I meant to donate it sooner. But I guess I was afraid to — afraid, somehow, that I’d be tempting fate.”

Ruth put her hand over mine, nodded gently and said, “Lots of women feel that way.”

I told her that I’d be celebrating my fourth anniversary cancer-free on March 3, 2010, and that I was finally beginning to feel a little more secure, a little more sure that I was going to be OK.

“I won’t be needing these anymore,” I said, perhaps more to myself than to her. I turned then, leaving everything sprawled on the table in her office,

The bandanas, the wigs, the knit cap have a job to do for other women who are going through what I once did, not so long ago. It was time for me — and for them — to move on.





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!”








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