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

And Cotton-Batting Filled Monopoly Players?

7 10 2011
Monopoly for Four? Photo by Amy Rauch Neilson.

At first I said no.

Theo wanted to play Monopoly Junior this morning with me and I was all in for that. But then he wanted to see what the game would be like with four players, and tried to convince me that Bunny and Fishy should play the other two positions.
That sounded laborious at best.
“No,” I told him. “That would just be sooo complicated, honey.”
But he persisted, setting up the animals, choosing their pawns, doling out their starter money.
Sigh. Really, who was I to discourage such imagination?
“Well, I suppose we could give this a try,” I said.
We did. And though it was a little chaotic, it was also a lot of fun.
Theo belly-laughed when Fishy, Bunny or I landed on his property. Now he had three players to compete against, three players to collect “rent” from.
What a hoot. Or should I say, a hop. Or a dip in the pond.
We are making memories I hope he never forgets. I know I won’t.
Copyright 2011, Amy Rauch Neilson

A Paleontologist in My Kitchen!

7 10 2011
Theo, unearthing T-Rex bones in our kitchen. Photo by Amy Rauch Neilson.

I woke up this morning and found a paleontologist hard at work in my kitchen!

He didn’t look like the picture of a paleontologist I had in my mind’s eye. But he certainly seemed to know what he was doing.

There was a pile of debris on one end of my kitchen island, and a pile of bones at the other. I quickly forgot that this young dinosaur scientist was clad in Elvis Rock ‘n Roll pajamas when he began to explain to me how the T-Rex once ruled the earth, and that likely a meteor strike was the beginning of the end for the dinosaurs.

Theo is home from school today, part of a two-day mini-break that began with a fabulous field trip with his class to Wiard’s Orchards in Ypsilanti, Mich. yesterday. The weather has been phenomenal all week and we are drinking it in, every moment. We are living the gift — the present.

In a week filled with Happy Squares, our next move will be lunch with Daddy, who is taking a half-day off work, then on to see our niece Emily march in the Brighton High School Homecoming Parade, followed by the football game and the band’s halftime performance. We can’t wait!

By the way, though Theo is intrigued by the life of a paleontologist, he stated quite clearly this morning that he is better suited to a life as a herpetologist.

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

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