The Story of Nick

28 08 2011

Nick, showing me how to make Snickerdoodles, December 2010. He began wearing the "Amy" Bracelet following my diagnosis a month later. Photo by Amy Rauch Neilson.

The bracelet I’m wearing is worn and tattered, faded. It’s rubber, maybe 3/4 of an inch wide, with a tear in one spot that nearly reaches half that width and a hole through the other side. Yet, it’s one of the most beautiful things I’ve ever seen.

It’s one of the “Amy” bracelets that have been globe trotting since we ordered them in February in an effort to get the word out about my blog, my disease, my mission. And until last night, it didn’t belong to me.

It belonged to Nick, the oldest son of my bff Diane.

Last night, I talked to Diane just a few minutes after I’d finished receiving the bag of platelets, before the hospital staff began infusing the first of my whole blood transfusions.

“Do you need me to come up?” she asked. “I can be there asap.”

I looked at the clock. 10:15 p.m. The two whole blood transfusions would take most of the night. I didn’t want to ask that much of anyone. I was feeling fine, confident that all was well, even hopeful that I might, just might, get some shut-eye.

“Nope,” I told her. “Everything’s going fine. I’m OK.”

“Well, call me if you need me.”

“I will.”

But I didn’t expect that I would.

Yet, within 45 minutes, I was back on the phone.

“Can you come immediately?” I pleaded. “I really need you.”

Just a few minutes before that call, I’d been receiving the first of the transfusions when I began to feel dizzy. I broke out in a cold sweat. Then darkness crept across my eyes until all I had left was tunnel vision.

I fumbled and found the nurse call button.

“Help! I think I’m about to black out!” I managed.

Within seconds, the doctors and nurses were in my room, checking my vitals, listening to my lungs, looking for signs that my body was rejecting the transfusion. That kind of reaction to foreign blood is not only very scary, but very serious.

Then, there was a collective sigh of great relief. I was not rejecting the blood. It was simply running into my body too quickly. Turning down “the drip” solved the problem and I began to feel better.


Still, I was terrified. What if it happened again and I couldn’t get to the nurse’s button? It was too scary to imagine that scenario while I was alone in my little room. That’s when I called Diane.

She was at my side within minutes, determined not to budge until I made it safely through the first transfusion and through the beginning of the second, which would be somewhere around 3 a.m.

We talked. She took my mind off of the obvious. I began to feel better.

Then, her phone rang. It was her son, Nick. I couldn’t hear what he was telling her, but I saw her look down at the “Amy” bracelet she was wearing.

“You want me to give it to her?” I heard Diane say.

It was Nick’s “Amy” bracelet and when he’d given it to his Mom as she was leaving for the hospital, he had meant for me to have it.

That wouldn’t seem so extraordinary if it weren’t for the fact that Nick, a teenager, had put his “Amy” bracelet on back in February — and he hadn’t taken it off since. That’s why it was so beat-up and battered, faded, ripped, holey.

Nick had been wearing the yellow and pink bracelet every second of every day, to school, football practice, when he was hanging out with his friends. He was committed to wearing that bracelet until I was in remission. He wore it with the kind of passion, determination, and focus that only a teenager can. I was deeply touched every time I saw him in those months, every time I looked at his arm and spied the “Amy” bracelet.

Tonight, though, was different. Nick was worried about me. He wanted an update from his Mom. And he wanted me to have the bracelet. His bracelet.

Diane gave it to me and I put it on.

Around 3 a.m., when it looked pretty certain that I was stable, she headed home.

After she had gone, I looked down at the bracelet, thinking about all the places it had traveled on Nick’s arm, all it had seen, heard, felt. It had become a part of him. And now he had given it up for me.

Several times in the early morning hours, I drifted off to sleep and was awakened by a nurse checking my vitals. Sometimes, I woke up and had forgotten where I was. Then it would come to me, the hospital, the transfusions. I’d look at my arm, at the bracelet that meant so much to Nick, the one he’d sacrificed that night for me, and it gave me great comfort.

People often ask me why I don’t wear one of my own “Amy” bracelets. It’s because on my arm, I’ve always seen it as a reminder of my cancer. And I need to give my brain some breathing room, an opportunity every now and again to forget what’s going on in my body.

Not anymore. Now, I see it as a symbol of the strength, determination and passion of a teenager named Nick, whose sheer will to see me through until I win this battle buoyed my spirits during one of my darkest, most frightening moments, and will continue to. What an extraordinary gift.

Thank you, Nick. You are amazing.

Copyright 2011, Amy Rauch Neilson

Go Directly to the ER. Do Not Pass Go.

27 08 2011

Yesterday, I began to notice that I was bruising rather easily. So easily, in fact, that I wouldn’t even feel it — I’d just look down and there it’d be — a big, ugly, purple spot on the top of my right hand. On my forearm. Two on my leg. A huge one on my left heel.

Then, later on in the day, my bff Elaine Schultz noticed three lipstick-pink dots on the left side of my neck, making their way down to my shoulder. I’d been carrying a bag with a strap on that side, so at first, we chalked it up to that.

But it really did start me thinking. I have to be extra careful and hyper-aware these days. The tiniest sign can mean something is going on inside my body that could quickly become a very serious situation. A matter of a few hours can make all the difference. That’s what happened in July and it prolonged my horrible hospital stay in isolation. I don’t want to be doing that again.

So, this morning, when I woke up with the bruising AND extreme fatigue — all my extremities felt like lead and I couldn’t get up off the couch — I knew what I had to do. Go directly to the Emergency Room. Do not pass go.

Don was with Theo and, as we are trying to keep Theo’s life as even keel as possible, we decided to see if Don could stay home with him and a friend could take me to the ER.

I walked over to my neighbor’s house. There she was, Kathy “K-Rod” Rodriguez, mowing the lawn. She cut the engine and when I told her what I needed, she flew into motion. Into her car and down the road we went.

Blood tests in the ER showed that it was even worse than I suspected. My platelets were dangerously low at 16,000 — thus the bruising. Normal range is 150,000 – 400,000. At 16,000, a fall or other hard knock could cause internal bleeding. Those tiny, lipstick pink dots? Turns out they are called Petechiae and they are a sign of low platelets.

My white cells were also low, at a count of 1. Ditto for my hemoglobin, which registered in the low-normal range, but had dropped significantly since my blood had last been tested just two weeks ago.

All of this meant I’d be staying. Admitted. I’ve grown to hate that word.

But good news on that front. While at first the doctors thought I would have to stay a few days, they reevaluated and decided that I could go into the “Short Stay” unit, get my blood transfusions, and, if subsequent blood tests show I’m rebounding, I can GO HOME TOMORROW! That’s the goal. And there’s a pretty good chance it’ll happen. Please pray it does.

Meanwhile, I’m getting new platelets right now. They look like a tangerine slushy in the bag hanging from my IV pole. Next, two to three units of blood. These transfusions will take most of the night. But, by morning, once my doc comes by during rounds, I can go home if all checks out.

One final word on all of this. Actually, FOUR: It’s Not My Fault!

Every time I wind up in the hospital, or with low blood counts, or something else goes medically amiss, someone who loves me — or many someones — calls, emails, texts or otherwise contacts me to YELL at me.

STOP doing this, or that, or the other thing. You’re causing these terrible things to happen, they say. I know it comes from a place of love, but it hurts.

Just for the record, that’s NOT TRUE. With K-Rod as my witness, I had this discussion with my doctor yet again today.

Is this my fault? Was it the trip to Chicago that did me in?

The answer is NO.

There’s a certain period in the cyclical nature of chemotherapy treatments when my blood counts are most likely to plummet, if they’re going to during that particular chemo round. That period is the Wednesday through Sunday before the next round of chemo is to begin. For this past round of chemo, that would have been last Wednesday, as in three days ago. It was Thursday that I began to feel some fatigue, Friday that the bruising started.

This, my doctor told me, is unfortunately the nature of long-term chemotherapy. There will be bumps in the road, like the tranfusion I needed in mid-April, the psuedomonas infection that hospitalized me in mid-July, the low platelet count that has me in the joint overnight. It’s all a part of it. That’s what I’ve learned.

But it won’t always be. Because someday, not so far down the road, I’ll be done with chemotherapy. I’ll be in remission. My body — the amazing machine that it is — will recover, rebuild, rejuvenate. And I will have even more energy to go out into the world and use my gifts to do the work God intended for me to do.

I’m looking forward to that day.

Copyright 2011, Amy Rauch Neilson

Bright Lights, Big City

27 08 2011

Theo waking up to the Windy City on his sixth birthday. Photo by Amy Rauch Neilson.

Theo woke up on the morning of his sixth birthday, August 22, 2011, threw open the heavy room darkening curtains and the whisper light sheers behind them, and peered out the window in awe and amazement.

Twenty-three floors below, the city of Chicago was wide awake and had been for hours. Tourists and city dwellers alike were bustling to and from their destinations. As for us, we, too, had things to do, places to go, and yes — even people  to see!

Our plans for Theo’s birthday were to find an awesome breakfast spot, hop on a water taxi and spend the day at the Navy Pier. Check, check and CHECK! We learned of a breakfast place just a few blocks from our hotel called The Yolk. I LOVED it — from the bright, mustard-colored decor to the outside terrace where we were seated, and yes, of course, the MENU! Think cinnamon roll french toast with a side of fresh blackberries, blueberries and strawberries. I also had the best glass of freshly-squeezed orange juice of my life — so good I ordered a second! And I’m not even a big fan of orange juice.

Pure heaven.

Next, it was off to the riverfront a few blocks away to catch the water taxi. How cool that in Chicago, you can travel by foot, car, traditional taxi, or water taxi!  Theo wanted to sit on the top deck of the boat, where the summer breeze rippled through our hair and the sun warmed our faces.

We got off at the first stop and began wandering the Navy Pier. There’s the famous Ferris Wheel — which I happily rode by myself, as both Don and Theo are wary of heights. A miniature golf course on which each of us had a hole-in-one! The Children’s Museum and Store, where Theo spent his birthday money.

Though I have had the privilege of traveling across a good part of the globe, Don and Theo are newbies. Neither of them had ever been to Chicago. For Don, the biggest city he’d ever seen was L.A., many years ago, when he was there on business, not pleasure. He spent most of his time in buildings, rather than outside, taking in their enormity and majesty. So, truly, they were both new to Big City Life.

But why the quest to share places near and far with my family? Couldn’t we accomplish many of the same goals closer to home?

Yes. And no.

Yes, because we live in a beautiful place where opportunities to embark on an adventure and enjoy family time together abound. And we consciously take advantage of that on a regular basis, be it a trip to the Cider Mill, a boat ride, a board game on the family room floor.

No, because there’s nothing like being away from home and the daily responsibilities and distractions of dishes, laundry, pet care, and discovering, together, all this wondrous planet has to offer. That’s how I grew up, and it’s what I want to share with both Don and Theo.

Some of the best memories are the times I traveled with my family when I was growing up — my parents and my sisters, Julie and Lisa. We saw the Grand Canyon, Hawaii Volcanoes National Park (I still have a piece of black lava from that trip), New York’s Central Park from a horse-drawn carriage, San Francisco’s Golden Gate Bridge.

But perhaps just as important as the what we saw is the why we saw it.

My Mom was first diagnosed with breast cancer in May 1973, when I was four years old. My Dad, who, along with two of his brothers, owned Rauch Brothers Paving Co., often worked long hours in his quest to make our family’s life easier than the one he’d experienced alongside 11 brothers and sisters in the years following the Great Depression.

There was nothing more important in the world to my Dad than his family. And so, when my Mom was diagnosed, he took a serious look at the long hours of work he put in to build his company. Then, one day, he sat us down and told us this: No matter what,  from this day forward, we are going to take at least one family vacation a year, every year, no exceptions.

And we did.

That’s been my philosophy and my intention for my own family, even before my first breast cancer diagnosis of Stage 1 in March 2006. After that diagnosis, it became even more imperative to me. And I’m sure I don’t need to point out how the news of my recurrence this past January accelerated my desire.

I have the desire to share the wonders of the world with my family, sans the panic of doing it just because I’m currently undergoing breast cancer treatment. I believe from the very core of my being that God has work for me to do on this planet, that I’m going to go into remission, and that I’m going to be here for a long time to come.

Still. Time passes quickly, and if we don’t set intentional goals for ourselves, too often, we look back and see the missed opportunities. Our goals for ourselves, for our families, have to be intentional and conscious.

When Theo was born, Don and I decided that every year, at the very least, we would plan a family get-away. Now that he is in school, our tradition is to plan at least three nights away together as a family in the weeks before the first school bell rings.

Some of the people in our lives asked us why we would do such a crazy thing — travel to Chicago the day after Theo’s big birthday bash — with my cancer diagnosis and tough chemo regimen. I think it’s also safe to say that though others may not have articulated it, it was on their mind. Why now? Is it safe for Amy’s health? Isn’t it just going to wear her out? Can you really afford to be off galavanting in another city, with the financial responsibilities of medical bills on top of Amy’s reduced ability to work?

The real question is: Can we afford not to?

My Dad, although a good steward of our family’s finances, also used to say that you can always make more money. But time spent and experiences together — those are priceless.


Copyright 2011, Amy Rauch Neilson

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

16 08 2011

Photo courtesy of:

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 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

You Have Got to See This

15 08 2011

Molly MacDonald, founder of The Pink Fund, first sent me this link over the weekend. Then, it kept appearing and reappearing in my e-mail box — each time, from someone different, someone unrelated to the others who had sent it on.

Someone was trying to tell me something. Now I’m telling you.

It is a Must Read Must See.

Read the article. Play the video. They both speak volumes.

Which is why I’m keeping this blog post neat and tidy.

Need I say more? I think not.

The New York Times article and video on Stage 4 Cancer Survivor Kris Carr is nothing short of amazing.

It ought to go viral. I hope it does.

Who knows? Maybe it already has.

Want to meet Kris? You’ve got your chance. She’ll be the Keynote Speaker at The Pink Fund Luncheon on Saturday, October 1.

I’ll be there. I wouldn’t miss it.

Neither should you.

Get the event 411 on The Pink Fund site.

Copyright 2011, Amy Rauch Neilson

Meltdown in the Grocery Store Parking Lot

9 08 2011

We're about to have some fun, you and me. Remember that Sesame Street game titled, Which One Doesn't Belong Here? Here's your chance to play the adult version. Pick the one that doesn't belong in our everyday diets. I went easy on you this time. No guarantees for next time. Photo by Amy Rauch Neilson.

Last Saturday morning began easy and laid back. All of us slept in til about 9:30 — quite unusual for Theo. We three then snuggled up on the couch and watched the World Premiere movie of Phineas and Ferb in the Second Dimension. I’d tivo’d it the night before. By the time the movie ended, the decision as to whether it was breakfast time or lunch time was a bit nebulous. We decided to move on to lunch.

I opened the fridge. Not a lot to choose from as I’d only dashed into the grocery store once that week, after returning from our trip to Indianapolis, to pick up some basics. Today was going to be the Big Grocery Shopping Day. But first, lunch.

Ewww. The contents of the fridge were not an appealing sight. Not because there was anything wrong with the food that was in there, but because of the type of food that remained. Our best option for sustenance was hot dogs. Don opened the package and threw them on the outside grille. Usually, I find them quite tasty. Today, the thought made my stomach turn. All I could think about was the nitrates they contained and how bad those nitrates are for my body.

He brought them in and fixed them in white buns. I tried to save the day (or at least, the meal) by slicing up some peaches. They were mealy and inedible. Don and Theo wolfed down their dogs. I squirted mustard on mine, took a bite, and couldn’t go any further. I had an aversion to hot dogs and pretty much everything else left in our kitchen.

“Is there something wrong with your hot dog, honey?” Don asked.

“Nope. It’s me, honey. Sorry.”

The “something wrong” was a culmination of months of reading various opinions by holistic and traditional Western medical doctors alike, finally coming to a head that morning in our kitchen. I had nearly finished the book Anti-Cancer, the one that of all the books I’ve read since my diagnosis, truly makes sense. It’s well balanced. It doesn’t pooh-pooh Eastern Medicine or Western Medicine, but illustrates how each of us can tap into the benefits of these different approaches to healing as complements to one another.

The author of Anti-Cancer, who is both a biochemist and an MD, figured out how to heal his own brain cancer through a combination of chemotherapy, supplements, and nutrition. The book not only follows his journey back to health, but he describes how he’s never been so healthy in his life.

I can’t do this book justice in six blog posts, let alone one. But I will say this — the changes in our food production and the increasing incidence of a wide variety of cancers, striking people who are younger and younger, is a major problem that we need to address in our country’s food supply. And if we can’t at this point address it on a national level, we can certainly start at the grassroots level — our own food choices.

Some of the changes that have brought us the most harm post World War II:
1. The staggering amount of refined white sugar in our diets, which grows every year;
2. The processed, bleached foods and preservatives we eat, like the bleached white flour that we can find on the ingredient panel of so many of our foods;
3. The changes in how our chickens are fed and treated (think egg supply), as well as how our sources of meat are fed and raised.

When you read about this and the long-term studies that back up how these changes are affecting our health, it’s not only staggering, it’s nauseating. This is the very same message that the doctor from Indianapolis is sharing with me. If I want to get healthy, I’ve go to change my diet, take the supplements that my specific body needs, continue chemotherapy (the diet and supplements dovetail nicely with my chemo regimen), and walk 30 minutes a day, at least six days a week. That’s for starters.

Sound like a lot to take on? It’s not. As I explained it to my friend Jennifer Amprim Wolf today, it’s all about the source of your motivation. For example, following the above protocol might be a passing thought if I was looking to drop 10 pounds for an upcoming wedding or high school reunion. But when it literally is a matter of life and death, well, it takes on a whole new meaning.

That brings me to what happened in the Meijer Parking Lot last Saturday morning. I drove in, parked, and began sobbing out of frustration and confusion. What am I supposed to be eating? How will I know when I get in there what to choose and what not to? Where’s the hidden refined white sugar, bleached flour, nitrates, poorly fed beef and poultry, eggs from caged chickens, organic vs. non-organically grown fruits and veggies? I was overwhelmed.

So, I called my cousin Lori Parker. Sobbing uncontrollably.

“What’s wrong, Aimers?” she asked.

And I’m quite sure that my response was anything but what she was expecting.

“I’m afraid of food!” I told her. And I went on to explain, as rationally as I could, that what I was about to put into my cart felt like a matter of life and death. Yet, I’m new at this and I’m not sure how to go about it.

We had a long chat there, me sitting in the Meijer Parking lot. And when we were done, I’d calmed down considerably and felt I’d gained back a little of my control. We brainstormed some ideas for good choices I could make in each department. With a new sense of confidence, I got out of the car and headed into the grocery store, where I found that I naturally gravitated toward the “good stuff” about 80 percent of the time.

I’ve never been a junk food eater, so it was no problem to pass up packages of Chips A Hoy, pastries, potato chips. I found myself naturally reaching out for fresh strawberries, organic peaches, blueberries, a seedless watermelon. I also craved green pepper, cucumbers, organic carrots. Mushrooms would also be of great benefit to me, but I loathe them, always have. So, we’ll work on that aspect of my diet some other day.

As I made my way through the store, I realized how many good choices I could make and how easy it really was. Whole grain pasta. Grass-fed beef. Organic eggs from free-range, properly fed chickens. Whole grain bread. Organic milk. I checked out and left the store feeling a bit more confident that slowly, I will learn how to choose and eat the foods that nourish my body, build my immune system, strangle off the blood supply to my tumors. I’m on a roll.

But you just can’t learn enough about this life change and how important it is to each one of us, whether we’re fighting cancer, another disease, or are enjoying a healthy part of our lives. That’s why I can’t encourage you enough to consider, really consider, attending The Pink Fund Luncheon on Saturday, October 1. I’ll be there for the full sha-bang, from the yoga class in the morning to the luncheon, the premiere showing of The Pink Fund national awareness and donor video that I was a part of last week, and the book signing by Kris Carr in the afternoon.

Author Kris Carr, a NY Times best-selling author of the Crazy, Sexy Cancer series, wellness warrior, filmmaker, and an irreverent foot soldier in the fight against cancer, will be the featured guest speaker. She has kept Stage 4 cancer at bay for many years and if you have not yet read her books, check them out. She has acquired an amazing knowledge of food, diet, nutrition, the mind-body connection — you name it — and the impact on the short-term and long-term health for each and every one of us. She is spunky and beautiful, and she’s put a whole new face on what it means to have — and live an amazing life with — Stage 4 cancer.

I urge you to attend. For more information, check out The Pink Fund event info. Tickets are going fast, so don’t dilly-dally.

P.S. The answer to the question posed in the photo caption is the bag of pure, refined white sugar. But you probably already guessed that.

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

A Perfect Night for a Luau

8 08 2011

Yes, that's a REAL Star Gazer Lily in my hair! Photo by Donald A. Neilson.

The theme for my bff Mollie Finch’s 30th Birthday Bash on Saturday night was Hawaiian Luau. And it just so happened…that Katherine Rose, a local florist and friend, had sent me an amazing, four-foot-tall Star Gazer Lily plant overflowing with fragrant blossoms last week.

I looked at it as I was getting ready Saturday night and thought, “Why not?”

I picked a pretty one, just the right size.


A few bobby pins and it was all good.

And yes, people not only leaned in to hug me all evening, but to smell my flower as well. I insisted.

Star Gazer lilies are my favorite flower. I first noticed them in the late 1990s, when they were part of a centerpiece at an event I was attending at my alma mater, Oakland University. I couldn’t get over how their sweet fragrance filled the room and I just love the flower’s other-worldly name.

So, I made a mental note, and when I married Don on July 4, 1999, I carried a large bouquet of Star Gazer lilies so that my wedding day — and my memories — would be infused with that delicate, sweet scent. Don gets me a bouquet of them every year for our anniversary, and as a surprise several times in between. That’s how the local florist, Katherine Rose, knew just what to pick out for me last week.

Don, Theo and I all had the Hawaiian theme going for us in one way or another. It was a fun night filled with great friends and happy times. Those are not only good for the soul, but good for the body and healing, as well. I continue to read and study about the mind-body connection. There’s a lot of scientific evidence to prove that indeed, people who are surrounded by loving friends and family statistically live longer, much longer, than their lonelier counterparts.

A few people at the party, who hadn’t seen me in a little while, remarked that I’m looking dramatically healthier than I did even a few months ago. I feel it, too.

I am very blessed to have all of you surrounding me with your love, prayers, and strength.

Keep it up. It’s working.

Copyright 2011, Amy Rauch Neilson

All Systems Go!

5 08 2011

I missed chemo again this week. Drag. Serious drag. I need to get back on my regimen.

When I went for my pre-chemo check-up on Monday, I was running a fever. I had no idea. I felt great. Just coming off our trip to Indy and a fabulous week with my little boy, I was on top of the world. And then.

And then I had a fever. Which threw the office into a tizzy. What did the fever mean? Was the infection that had landed me in the hospital still unresolved?

As I had completed my round of oral antibiotics two days earlier, the consensus was that likely a small amount of the infection remained, was trying to gain a foothold, was behind the fever. And I can’t have chemo treatment until all systems are go.

Here we go again, I thought. Blood draws, cultures, pokes and prods. I began to panic that I was headed for the ER and even worse — readmission. It’s only been a few weeks since my hospitalization, so I’m still shell shocked and it doesn’t take much to get my mind going down that path, my heart racing, beating so hard I’m sure it’s going to explode out of my chest.

Long story short, the docs put me on one more week of antibiotics. Whew. That could have ended so badly, but thank God, it didn’t and I was home Monday night snuggling in bed with my boys.

No fever since Monday — and that was the only time that day I had a fever. Strange.

Saw my Infectious Disease doc yesterday (I didn’t even know there WAS such a thing until my recent hospitalization!) and she said I’m looking great. In fact, when she walked into the office, she looked at me, then at my cousin Lori Parker and said, “You both look terrific! Who is the patient?!” Quite comical.

All is healing, inside and out. She cleared me for chemo for next week. That is excellent news. Let’s get on with this and get it over with, as I’ve given my cancer a deadline.

Yes, a deadline. It has until Jan. 1, 2012 to GET OUT. I’ve been telling it that daily — that it’s not welcome in my body and it’s gotta go. Vamoose. Skidaddle. Bye-bye. And it will listen.

There is a huge mind-body connection in all of us that we are just now beginning to understand and take advantage of. I’ve been learning all about that, as well as the importance of including exercise, meditation/yoga, supplements and the right foods as complements to a chemotherapy regimen.

I had a hidden agenda when I was in Indy. As the people who know me well often say, I always have a hidden agenda. Those wheels in my brain are turning, and very quickly at that. They are flowing freely — no oil necessary.

I’ve been delving into the world of biochemistry and it is not only fascinating, it is a huge component of both the “now” and future of successful medical treatment. Understanding our biochemistry — each of us on an individual basis — can also keep us from ever having to go down the “sick” path by keeping us healthy. So, in Indy, I saw one of the foremost biochemists/MDs in the field. He will follow me and I will follow his advice to the T. More, much more on this soon.

One small nugget to share with you: peaches have been found to be an amazing food for us. They’re in season now. The branches of the peach trees at the orchard near our house are drooping under the weight of these juicy treats. I’ll soon be making peach jam with my bffs Lisa and Lindsay, as well as freezing some fruit for winter. Get out there and get yourself some peaches to munch on. Your body is craving them. Trust me.

Meanwhile, I’ve been cleared for something else — waterparks! No lakes, no hot tubs, per my ID doc yesterday. But…pools are A-OK, so Theo and I are off to the waterpark today with our friends Marnie and Nate. And the weather for this outing couldn’t be more perfect. Yahoooeeyyy!

Copyright 2011, Amy Rauch Neilson

Stats Aren’t All That

3 08 2011

Artwork courtesy of The Pink Fund.

When I read Tami Boehmer’s post on The Pink Fund site today, I knew I needed to share it with my readers. Tami is an amazing woman with an incredible, inspiring story. What’s more, as I was reading through her blog post, I realized she referred to the very book I’m reading at this moment: Anti-Cancer: A New Way of Life. I was just lying in bed with it last night, highlighter in hand. What are the chances? The book was recommended to me a month or two back by my friend Scott Orwig, who was diagnosed earlier this year with prostate cancer. I’ve done a ton of reading and sifting through preventive and curative cancer information in the past several months and I must say that the perspective that Anti-Cancer and Tami Boehmer take are spot-on. Right after I hit “publish” on this post, I’m going to see if Tami’s book, From Incurable to Incredible: Cancer Survivors Who Beat the Odds is available for download as an iBook. Wish me luck. I’m so anxious to read it that I hate to have to wait for an Amazon delivery or find a Barnes & Noble. Oh, one last thought: I’m going to print out a copy of Tami’s blog post and put it up on the wall to remind me at those scary moments that there is indeed hope, no matter the prognosis. You might wish to do the same. — Amy Rauch Neilson

By Tami Boehmer

I don’t believe in statistics. They’re great when you’re told they are in your favor, but they stink if you’re on the wrong side of them.

It felt good to have a chat with my oncologist and learn he feels the same way. He told me he doesn’t like them! I do believe these numbers lump everyone together, no matter the age, lifestyle or whether or not they are taking an active role in staying healthy. Those people aren’t me.

I told this to my oncologist and he commented that about 80 percent of his patients don’t take care of themselves at all. They go to get chemo, but little else to help the process. So I feel like I’m ahead of the curve.

In sharp contrast, I also go to another city to see a top oncologist who is on the forefront of groundbreaking research. He tells me about great new trials that sound promising and how there is more money being spent on breast cancer than any other cancer. But he also talks about the grim realities of metastatic breast cancer and makes remarks about the unlikelihood I’ll be around in 15 years. That’s his opinion, and I don’t accept it.

Here’s what Doug Ulman, president and CEO of the Lance Armstrong Foundation and three-time survivor, told me when I interviewed him for my book, From Incurable to Incredible:

“Lance often tells the story of how one doctor said to him, ‘I like your chances.’ He said all he needed was that confidence, someone who believed. People want to be inspired and hopeful.

That’s why I don’t often see the value of statistics. It might be helpful if you tell someone that people with their diagnosis have a 90 percent chance of surviving. But telling someone they have a 20 percent chance? What does that do but demoralize them? Could you make a statement about the gravity of the situation and still offer hope? I think so.”

I know there is much more to the equation that goes beyond the medical model. After all, I’ve talked to people all over the country who are alive and well today after doctors told them otherwise.

Medical stats lump everyone together – people who lead a holistic lifestyle, are happy and have purpose in life; and people who eat junk food, don’t exercise, and are stressed and depressed.

David Servan-Schrieber, MD, PhD, in his book, Anti Cancer: A New of Life (Penguin Group, Copyright 2008), talks about the bell curve of statistics from which median survival rates are derived. I recommend you read the book to get the full story; it’s wonderful. When I read it, I highlighted this part and put a star by it because I think it’s so important:

“Statistics we are shown on cancer survival don’t distinguish between people who are satisfied with passively accepting the medical verdict and those who mobilize their own natural defenses. … And within this “median” are those who live much longer. This is most likely because, along with the benefits of the conventional treatments they receive, they have somehow galvanized their natural defenses. They have found harmony in this simple quartet: detoxification of carcinogenic substances, an anticancer diet, adequate physical activity, and a search for emotional peace.”

Don’t bet your life on statistics. There is hope no matter what the prognosis.

Tami Boehmer is a metastatic breast cancer survivor, speaker, blogger and author of From Incurable to Incredible: Cancer Survivors Who Beat the Odds. You can visit her at

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