Could There Be Pioneers in the Year 2011?

10 10 2011
Blog reader Nancy Allison, left, and me, at the Light the Night Walk for The Leukemia & Lymphoma Society in Ann Arbor, Oct. 8.
Photo by Don Neilson.

I was walking through a crowd of a few hundred people late Saturday afternoon with Don and Theo when I heard someone calling my name.

“Amy? Are you Amy from the Its In the Genes blog?”
I stopped and turned around and met Nancy Allison, a blog reader who actually recognized me out and about in downtown Ann Arbor, getting ready for The Leukemia & Lymphoma Society’s Light the Night walk. She’s a regular reader of my blog and actually recognized me from the blog photos.
“I thought it was you,” she said. “Then I saw Theo and Don and I knew it was you!”
It was great to meet Nancy. And I was quite surprised that someone could actually recognize me from the blog pics.
But it was exciting. It was exciting to meet someone who regularly reads my blog, and who believes it makes a difference.
That’s what it’s all about.
Back when I was in the hospital for a week in July, my bff Anita Griglio Kelly came to visit one afternoon. She sat on the edge of the bed as I was having a particularly hard moment and comforted me with a big hug, despite the gown, mask and gloves she had to wear because I was in isolation.
“I just want to make a difference,” I told her through sobs.
“You already are,” she said. “You have touched more lives through your blog than you will ever know.”
I hadn’t thought of it that way. I don’t know what I expected “a difference” to look like, or how it would arrive. From that day forward, I began thinking of making a difference as part of an ongoing journey, rather than a destination.
The word “journey” came to mind again yesterday, as I was reading through the Beaumont Hospital breast cancer newsletter. In the Ask the Expert section, Dr. Marissa Weiss, president of, had this to say:
“New therapies for breast cancer are usually first introduced in clinical trials for women with metastatic disease, so women with metastatic disease truly are pioneers for new treatments and approaches in the future.”
I’d never thought of myself that way — as a pioneer in the year 2011. Until I read that article, the word “pioneer” in my mind had always been reserved for those people who had battled the elements and traveled cross country in covered wagons in the hopes of a better life. The brave ones who had gone ahead of us, into the unknown.
Though the covered wagon days are over, perhaps there are still pioneers in the year 2011 — pioneers in all of the women like me who are undergoing chemotherapy with drugs that haven’t yet gained the approval of the FDA. We’re willing to be among the first to blaze the trail for drugs like BSI-201 (the PARP inhibitor) in the hopes that they will not only prove effective in treating cancer in our own personal battles, but that they will light the way to better cancer treatments in the future.
Speaking of lighting the way, Don, Theo and I walked a mile through the streets of downtown Ann Arbor Saturday evening along with hundreds of other people who walked to raise money and awareness for blood cancers, like the lymphoma our friend Frank battled successfully 9 years ago and the childhood leukemia that my friend Kim’s five-year-old son, Kyle, battled at the age of three. Kyle, who is in remission, was one of the honored heroes that night. He, too, is a pioneer, as his DNA is being tested by scientists near and far in an effort to discover better treatments and even a cure. And all around him were supporters of the cause — including my husband, Don, who signed up to become a registered bone marrow donor.
That night, I learned that often it is the progress made in treating and curing blood cancers that leads to better treatments and cures for all other types of cancers. Childhood leukemia, which in 1960 had only a 5 percent cure rate, now has a 98 percent cure rate. Stage 4 breast cancer, a diagnosis that not so long ago was a death sentence, is becoming a long-term, treatable disease.
In that same Beaumont newsletter, I came across these words of hope from Dr. Larry Norton, the Medical Director at the Evelyn H. Lauder Breast Center, Memorial Sloan-Kettering Cancer Center — one of the top cancer hospitals in the world. “One of the major changes in metastatic breast cancer over the years is the conversion from an acute fatal disease to a chronic one that people can live with,” he said. “I have people with metastatic breast cancer that I’ve cared for for 25 years. I expect that we are going to see more and more people with long survival with this disease, which is always a prelude towards disease cure. I suspect we’re in that transition now.”
As we carried red (signifying supporters), white (survivors), and gold (loved ones we’ve lost to the disease) balloons that glowed in the night via small batteries hidden inside the latex, we walked with the hope that each step was bringing us closer to what will one day be a cancer-free world.
Pioneers in the year 2011. What an empowering thought.
Copyright 2011, Amy Rauch Neilson



8 responses

10 10 2011

Amy, you are definitely a pioneer, and one with a large voice. Your message is reaching so many. And not only a message about breast cancer but about your faith and how it supports you through all of this. You’re being USED girl–and directed at the very highest level. You said you could hear your washing machine and dryer talking about you–which I don’t doubt for a moment. Therefore you sure ought to be able to see the guardian angel right behind you.

10 10 2011

Amy, your strength and honesty have helped me through some tough times. My son is battling PSC, not cancer; we’re waiting for ‘the call’ that a new liver is available, thanks to the generosity of a blessed stranger. I see my own fears and hopes in you, and that’s comforting. Not everyone is gutsy enough to lay it all out there. You’re a pioneer in more ways than one.

10 10 2011
Rita O'Connor

Hi darlin’ Amy! Its “Mom Reet” here! I’m just a-readin’ all your messages and those of all your supporters, and there are SO MANY of them!
I know your Dad and Mom are a-smiling down on you and pulling strings with the Lord for you. (You know your Dad would be good at that!) So keep that courage line high. You are using your gift of “writing” in a wonderful way!
Hurrah Amy! SIS BOOM BAH!

10 10 2011

Amy, you are a pioneer. I admire how you, who are going through what you are, is still there for so many others in your shoes. You have helped and encouraged me in several ways.

10 10 2011
Laura Schultz-Abeli

Amy, I have been reading your blogs and this is the first time I have replied. I think you are wonderful with your great attitude and outlook on life. I am a breast cancer survivor and I really do believe attitude is a huge part of becoming a survivor and living a long great life. Thanks for being there for all of us!! 🙂

11 10 2011

You do make a difference and I want to thank you for that. I am a survivor of breast cancer twice! I had it 13 years ago and again this past April there was another tumor in the same breast. I have learned so much from you and have bought the books you mention as well. It has helped me very much. So please know that you have made a difference in this readers life and I will continue to read your blog for a long, long time.

11 10 2011
amy youngblood

thank you for this post. u got a knack for turnin those frowns upside down!

12 10 2011
Nancy Allison

I’ve been thinking about you a lot since I met you on Saturday. In fact, last night I was trying to figure out the right words to write. Your ability to make people really feel what you are thinking/feeling is amazing. Although we just met I feel like you are my sister. When I say that you are in my heart I really mean it. Because of you so many people realize the fight that you and your sisters/niece/mother are in and so many other women. I had no idea before how devastating this disease is without it ever even being diagnosed! I am praying everyday for your niece who is going thru her surgery this week. I am proud to have been part of Kyle’s Korner team. and I am also proud to have been part of the “Robin’s Wings” team for the May Susan G. Komen for the Cure Walk and help raise $5000+ for research. Thank you for all you do.

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