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




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








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