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.
“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



21 responses

3 11 2011

Thinking of you.

3 11 2011

Praying for good results.

3 11 2011

Always praying for you . . but I will say a few extra prayers!

3 11 2011
Cheryl Buck

You are always in my prayers and thoughts. Love you:)

3 11 2011
Scot Orwig

We’ll be watching eagerly for news of the MRI and x-rays. It sounds like the dietary change and the extended chemo would be enough to wear anyone down, so the scan anxiety couldn’t have come at a worse time. There will always be setbacks but it’s especially hard to keep them in perspective when you aren’t feeling well.

3 11 2011
Marie Petrides

Praying for excellent results Amy. I know exactly how you feel. Its not easy always being strong…..take care

3 11 2011
Lori Madison

So glad you were able to get some time in between with your family. Thinking about you!

3 11 2011

Amy, I’m glad you fixed the link! I was wondering what was going on.
I’m sorry you are feeling down, and tired (and probably hungry!)
So good to read about the beautiful moments in your life with Theo, your husband and your family and friends. That’s serious quality!
Big hugs to you and praying for good results from your scan. Take care, and keep hope alive! Xxxoooxxoo

3 11 2011

Everything is crossed for you that the results of the scan will be the best possible news. Stay strong………you always are.

3 11 2011
Carol Phillips

Amy, Will continue to pray for you. My son lives on the diet you were describing and has some good recipes. One is actually for pizza (w/o cheese) but made with an Almond flour crust. It was pretty good. I will get it from him and make if for you soon for dinner. It’s OK to have a bummer day or two. You have been delt a difficult hand. God’s grace is for one day at a time. W love you!

3 11 2011
Rita P

Oh, lawdy, Amy you are a bright star! I hope you can “own your light” as you face these many challenges.

3 11 2011
Rita O'Connor

I love you love you love you darling Amy. You sure do have a GREAT cheering section in your life! Cheers and love and optimism are tunneled your way! ….. From SO MANY of us! Hang in as always, and know that the prayers are RUSHING to God Who answers all of them. Stay strong, and tell Don that he is the “unsung hero” to all of us. Mom Reet

3 11 2011
Marsha McAuley

i am praying for you amy. stay strong.

3 11 2011
Jennifer Wolf

Oh, Aim…you are doing great. I’m so proud of you. You are strong, and incredibly brave. I’m not sure too many people can understand the kind of courage and commitment it takes to live beyond yourself, focusing solely on the ones you love. Those of us who are blessed to know you are lucky, and I hope that from you we are learning how to live as God intended. You have so much to give to many whose hopes for the future are intertwined with the choices you make every day. You cleaning out the fridge might not seem like a huge step right now, but by making the decision to work with Dr. Waldo, you are sending a message to everyone that it’s OK to take action and be pro-active with your health. I love that. I love that you are kicking cancer’s butt, Amy. I know you can do it. I know you will do it. I’m with you all the way, carrying the 3-gallon jug of reverse-osmosis water on my back. xoxox

Steve *tousle, tousle, tousle*)

3 11 2011

tears and prayers. and some gentle virtual hugs, my friend.

3 11 2011
Aunt Doris Nielson

Amy and Don, count on my constant prayers, too. Love you all.

3 11 2011

Darling Theo…what a trooper! I don’t know as I could have hopped into that big pumpkin! Gooy is the least of it! LOL What a wonderful memory for you and for him. He’s getting so big, its hard to believe! As always, my prayers are with you.

3 11 2011
Linda Stanislawski

keeping you and your family in prayer

3 11 2011
Ken and Gay

Sending prayers your way and asking for your guardian angels to stay close beside you. May the blessings come down as the prayers go up to the ears of God. You are loved more than words can ever say!!!

4 11 2011
Sarah Ludwig Rausch

Love you, Amy! Praying for you and your family and for the doctors who are working with you. You’re such an amazing person and my life has truly been enriched by knowing you. Hugs!!

4 11 2011
Jen Meus

Praying for you and for good results. Despite the “dumps” you’re clearly a strong and resilient woman and WILL get throught this! Another fighter inspired by you: Jen

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