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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Trying to Focus on Bright Rather Than Bleak

3 11 2011
It’s the Great Pumpkin, Theodore Neilson! Photo by Amy Rauch Neilson.

Life just feels really hard right now. So, I am extra, uber-grateful for moments like this one. On Sunday, Don, Theo and I went to a local pumpkin farm and spied this big orange beauty. It weighed in at 121 pounds — and that was WITHOUT Theo inside! 🙂

Usually, these prize-winning sized pumpkins go for in the neighborhood of $80. That’s why we’ve always stuck with the, er, well, more “traditional” size.
Not this year. The farmer told us he was offering deals that day. It was, after all, the day before Halloween and the demand for his crop would be plummeting in a matter of hours. He knew it and I knew it.  Supply and demand basics from Econ 101 back in my freshmen year of college…
“$34,” he said.
I shook my head.
“$25?”
“Nope.”
“I’ll give you $20,” I said, waving a crisp bill in front of his face.
“Sold!” he said, taking the twenty dollar bill, loading our big prize onto a dolly and heaving it over and into the back of our SUV.
It was a thing of beauty — the reflection of all of that orange in the back of our car. We drove to my bff Tabitha Green’s house, where it took six of us — Tabitha, Rodney, their daughter Lauren, me, Don, and Theo — about 2 1/2 hours to carve it. Talk about entertainment. We had a blast. Right up there with the best $20 I’ve ever spent.
We all stood back to admire our work when Tabitha said, “Hey, I bet Theo would fit inside!”
Theo’s eyes got wide and he looked like he wanted to simply disappear. He finally agreed — as long as he could keep his socks on. He’s got a thing about goop.
So, in he went, and indeed, he fit quite perfectly!
What fun we had with that pumpkin! I brought it along as a “prop” to Theo’s school for Trunk or Treat Monday morning. We lit it with an uber-large candle Halloween night and the kids who came to the door wanted to know if that great big pumpkin outside was real. Indeed it is, I assured them with a wink and a grin.
These are the moments of my life that I cling to when the going gets rough. And it’s been rough.
I consulted with the dietician who works with Dr. Waldo (the specialist from Indianapolis) last Friday morning. With the help of my bff Jennifer Amprim Wolf, I cleared the cupboards, fridge and freezer of all the things on the “cannot eat list,” of which there are many. No dairy, with the exception of butter and Almond milk. No sugar. No coffee. No beans (allergy tests showed I’m allergic). No gluten. No yeast. (We found one loaf of bread at Whole Foods that contains neither.) It’s a challenge, to say the least.
I’m allowed meat, like steak, chicken and turkey (I also have seafood allergies). And potatoes are fine. Lots of veggies and some fruit. Lots of nuts. Still, the choices feel so limiting to me and the change so dramatic. “You might feel a bit of depression as your body adjusts to the chemical changes of this new diet,” the dietician said to me. I’ve been feeling more than a bit of depression.
Yet, I’ve not cheated since I began the diet last Friday. I’m committed. Dr. Waldo told me that if I cheat, I have to start all over again. This current diet plan is quite strict, will go on for about 8 weeks, then hopefully, if my body has made progress, the dietician will slowly begin to add in more foods. I’m hoping for coffee, bananas and strawberries — all on the “no go” list right now. But we’ll see.
I’ve also had severe pain in my right rib cage. So Tuesday, when I went for chemo, the doctor checked me and is quite sure I have a broken rib. He sent me for multiple Xrays and an MRI. There’s concern over the CT Scan from two weeks ago — some possible areas of question along my spine. So, they’re taking a closer look there. I should have results today. Don is taking me to chemo so he can be with me for those results.
I’m really scared. If there’s progression, not only is that terrible news, but I would have to go off of the PARP Inhibitor — per protocol of the trial. I’m also down in the dumps because the oncology staff indicated Tuesday that my chemo regimen is a lifestyle — not likely to come to an end. I will have breaks — like the “chemo vacation” I’ll have in December — a whole month off. But as of now, they don’t see anything changing. Keeping my cancer stable and in check may mean indefinite, ongoing rounds of chemo. It’s hard to imagine living like this, permanently, three trips to the hospital two weeks in a row, one week off, repeat.
Each round of chemo is cumulative, and my body is getting really beat up. I liken it to a Rocky movie, where each time the opponent goes down, the referree begins the count and it takes longer and longer for the boxer to get up. This past week, that was especially noticeable to Don, who says I used to lie down for an hour long nap, then pop back up. Now, he finds it harder and harder to wake me. And, usually, I rebound well during my week off. Last week, not so much.
We’re looking into other options as well. The name Dr. Burzynski has come across my radar several times in the past few months, and more prominently so recently. He is a doctor based in Houston, Texas, who has patented a number of cancer-fighting drugs that are successful in patients with certain genetic fingerprints. Blood tests determine whether or not you are a candidate. The treatments are less toxic than chemo, and studies show, more effective. Don is knee-deep in research on Dr. Burzynski, as are many of our family and friends, and I’ve been asking my doctors for their opinions as well. I may be heading to Houston in the near future.
In the meantime, I’m trying to keep my head up and continue to do what I need to do to give myself the best chance of staying on the planet. Please pray for good test results today. I will keep you updated, and I will continue to post pictures of the bright moments in my life, of which I am blessed to have many.
Copyright 2011, Amy Rauch Neilson




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




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





Day in the Life

15 02 2011

The heart-shaped Jello jigglers disappeared fast.

I called my friend Betsy around dinner time yesterday, just as I was preparing a meatloaf for the oven. I wanted to thank her for the gift certificate she donated to the Bowling Night coming up on March 18, and also for the beautiful Valentine that arrived in yesterday’s mail. That, and I just wanted to hear her voice.

Betsy owns the Inn at Old Orchard Road in Holland, Mich. She’s a big part of the reason why Don and I fell in love with Michigan’s west coast, so much so that we decided to get married there on July 4, 1999.

“Tell me about your day,” she said.

My days post-diagnosis start the way my days always have. We are creatures of habit and as much as possible, I’ve tried to stick to my normal routine. I think it’s good for me, and it’s good for Don and Theo. Wallowing in self-pity and refusing to get out of bed serves no one, and besides, I love mornings. Always have. So, I’ve got that going for me.

I’m up and at ’em by 6:30 a.m. I make Theo’s lunch (he always wants PB&J), feed the dogs, offer a cheery Good morning, Toad the Wet Sprocket! greeting to our American Toad, who sits atop Don’s old-fashioned popcorn maker and cart in our kitchen.

Yes, the kitchen. I have a terrific and very understanding husband. And yes, toads do have ears. Poor thing.

Next comes the ruckus of Don getting ready for work while he’s trying to get Theo ready for school. I hear the usual, But why can’t I work on my dinosaur excavation project before school Daddy? You never let me! Never, as defined in the world of Theo, meaning “since yesterday.”

As it’s my week off of chemo, I blog while I wait for my cousin Christine to pick me up for breakfast. We hit one of our favorite spots, the Red Apple diner in downtown Belleville. Then it’s off to things of everyday life, some of which I’m not able to do during chemo weeks.

Go to the bank. Stop by Walgreen’s for refills on the seemingly endless number of prescriptions that are crowding my life. Kroger. It feels good to push my cart aimlessly down the aisles. I’ve not been to the grocery store in a while.

Last stop: pick up antibiotics for our chow, D.O.G., who is allergic to himself. Yes, I said allergic to himself. In the early years of the decade since D.O.G. became a member of our family, we took him to the vet numerous times and finally out to Michigan State University, one of the finest veterinarian schools in the country, to try to figure out why, every now and again, D.O.G. itches like crazy and can’t stop chewing on his limbs. Occasional courses of antibiotics keep this condition in check.

Back home, I’m starting to wear out, so Christine comes in and helps me unload the groceries and makes a pan of red Jello jigglers that will be ready to cut into heart-shaped favors by dinnertime. She gives me specific instructions to rest, and she’s out the door.

Around 3 o’clock, I’m pooped. I’m thinking I should try to squeeze in a short nap in an effort to refuel before Don and Theo burst through the door. I go upstairs to lie down, but rest doesn’t come. Instead, fearful thoughts invade, the faucet turns on full blast, hot tears stain my cheeks. What if this is my last Valentine’s day with Don and Theo?

I am quite certain that I will be here same time, same place, next year. But I also know that the possibility that I will not is quite real, much more so than last Valentine’s Day.

I liken this period of my day to my sister Julie’s description of summer in the tropics of Florida, where she lives. Sunshine and blue skies prevail. Then, right on schedule every afternoon, there’s a deluge of rain. It stops as quickly as it started, the sun, the sky reappear.

Rest does not come easy these days. And the choices are few. It’s either knock myself out with an anti-anxiety med, or just allow myself to experience what I feel for a few minutes, then move on. Today, as I often do, I opt for the latter.

I give up on the nap and decide I better get that meatloaf in the oven. And truly, this meatloaf is too big for three people. It’s Valentine’s Day. And I miss my neighbor, Alice (pronounced A-leese). I call her CFW for Crazy French Woman, this slender, spit-fire of a friend who makes me laugh. She calls me NUG — Neighbor of Useless Genius — a nickname I earned after the countless times she’s had to show me how to do something mechanical, the same something, like hook Theo’s pull-behind to my bike.

So, I call and invite her and the kids for dinner. Her hubby, Mark, is working, she tells me, and she was just trying to decide what to do about dinner when the phone rang. They’ll be over in an hour.

Dinner is festive, a potluck. Many a time in the years we’ve lived here, we’ve potlucked. In the middle of winter, we often bundle Theo up and pull him by sled across the lake to Mark and Alice’s house, our dish-to-pass tied on to the back.

It is great fun — not to mention that Alice is from France and has never cooked or baked anything less than marvelous in all the years I’ve known her. Tonight is no exception. She brings a veggie tray with a bowl of homemade dressing that, even with the recipe, I’ve never been able to duplicate.

The kids run pell-mell through the house, super-fueled by the sugary treats that are the unspoken prerequisite of all classroom Valentine’s Day parties. We get them to sit down at the dinner table long enough to take a few bits of meatloaf and scalloped potatoes, all the while dangling the promise of those heart-shaped Jello jigglers.

At one point, the kids actually sit down and watch TV. It’s such a wonder that I stop clearing the dishes and tug on Alice’s sleeve. “Check it out,” I whisper. “The kids are actually sitting.”

Alice and I steep mugs of blueberry tea teaming with antioxidants that arrived over the weekend from my friend Sherri in Chicago. We get in a couple minutes of quiet conversation before the kids are back at it — noisily racing monster trucks on the kitchen floor.

It’s a school night and time to call it a day.

That, Betsy, is a Day in the Life. And a beautiful one at that.

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





Blog Readers, You Are Warriors!

31 01 2011

Blog Readers, you are already proving to be Email Subscription Warriors! Since I sent out my appeal for blog subscribers at 10 p.m. last night, 37 of you have signed up!

The site had just 8 “official subscribers” as of early yesterday, when I began my quest to figure out how to add the Email Subscription Widget (yes, it’s really called a Widget!), and sent out the call that my goal is 5,000 by March 3, 2011.

That takes us to 45…and counting…watch for more updates…








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