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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Oh, Great Crappy Day!

14 04 2011

Today, I felt physically horrible. Yet, great things happened.

Physically horrible because not only are my white blood cell counts down — which meant Don has had to give me shots of Neupogen the past two nights, the injection that helps my white counts to recover, but makes every bone and muscle in my body ache in the process.

This Chemo Round, there’s also the added complication of a low Hemoglobin count. Tuesday’s chemo was a game-time decision; the doctors considered my counts before finally deciding to go ahead with my infusions. I was given an extra infusion of a drug called Procrit on Tuesday along with my standard chemotherapy drugs, in the hopes that my counts will recover and I will not need a transfusion.

But speaking of great things, I was humbled and deeply touched by the number of people who stepped forward yesterday and today to offer to roll up their sleeves and donate their blood for me, in case I do need a transfusion. Don’t ever bother to tell me there aren’t a lot of wonderful, giving people in the world, because I won’t believe you. Not for a second. I’ve seen way too much to the contrary to ever believe anything else.

And on to more great things — today, I heard from television, print, and radio media regarding upcoming interviews to help get the word out there about my story, the unlikelihood of this diagnosis after all of the preventative measures I took and the aggressive treatments I underwent, and the hope that this information will help to save lives, many lives through better methods of self-examination post-mastectomy as well as monitoring.

I have dreamed of starting a foundation for more than two decades. I wasn’t sure exactly what shape it would take, but I’ve always wanted to find a way to help people on a large scale. I think the pieces of the puzzle of just how that will happen in my life are beginning to fit together.

I had the good fortune to end up spending more than two decades as a financial writer/editor, which means I have acquired a good understanding of investment vehicles and how they work. My plan is to use this background down the road to manage the financial end of my foundation to help all donations and revenues to grow and thrive so that the funds can help as many people as possible.

I see the foundation as growing out of http://www.itsinthegenes.org in a multi-faceted way. I have big plans, many of which I am already moving from the planning stages into the actual implementation of the ideas.

It’s all, always, in God’s time. And He, no matter how confusing or difficult the circumstances in which you find yourself, is always right.

Copyright 2011, Amy Rauch Neilson





Living with the Lump…But Only for Now

8 04 2011

This "Hop to a Cure Frog," a gift from my niece Danielle, reminds me that every day, were that much closer to finding a cure. Photo by Amy Rauch Neilson.

Last time is so different from this time.

The first time I was diagnosed with breast cancer was in March 2006. I was a Stage 1; the lump was the size of a blueberry and extensive testing, including a Sentinel Node biopsy, showed that, thank God, the lump was contained to my left breast.

I had a protocol of treatment that felt intuitive. It was through a lumpectomy on March 3, 2006 and the subsequent biopsy results that the margins around my tumor were declared “clear.”

Still, because I am BRCA 1 positive and the likelihood of a new primary was statistically quite high, I opted for a double mastectomy on April 14, 2006. Then, as “insurance” against the possibility that there was a rogue cell or two lying in wait someplace in my body, I opted for the recommended four doses of chemotherapy.

I began my protocol of Adriamycin and Cytoxan on May 31, 2006. I was done by July 28, 2006. I knew I would be. My schedule was pre-set – every third Tuesday, four chemotherapy treatments total. I could count the days, cross them off on the calendar, feel myself getting closer and closer to the end of treatment and the beginning of my new, cancer-free life. But best of all, I knew that the cancer was gone from my body and that all of the additional treatments I was undergoing were “just to make sure.”

This time around is so counter-intuitive. I’m not saying that the treatment approach I’m doing is anything but what it should be. It definitely IS as it should be and I am grateful to have it. The protocol just feels odd and takes some getting used to.

Because I was diagnosed as a Stage 4 this past January, with metastasis in my breast lymph nodes and both my lungs, chemotherapy comes first, surgery later. I understand the logic. First we treat and get rid of the metastatic breast cancer in my nodes and lungs, because that’s where the true danger lies — in its ability to continue to grow or even spread. Then we go for the lump in my breast.

This approach, I’ve learned, is called neoadjuvant chemotherapy – chemotherapy that is given before surgery to help shrink the tumor(s) before removal. Once we’re “down to the last tumor,” – which will likely and hopefully be the one in my left breast that started this whole thing – the surgeon will go in, remove my left breast implant, and get rid of that lump. Then, I’ll go through a series of radiation treatments to make sure we got every last cell.

That’s when the lump in my left breast will be gone for sure. And I’m so looking forward to that day. Because even though I understand the course of my treatment, it is psychologically difficult to walk around with a lump in your breast every day, knowing full well that this hard tumor the size of a shooter marble is cancer.

I feel it. I know it’s there. I want it gone.

All things in their time.

Copyright 2011, Amy Rauch Neilson





There’s Still Cause for Celebration

3 03 2011

Fireworks are one of my favorite sights in all the world. Photograph Courtesy of Smashing Magazine.

Today would have marked my five-year, cancer-free anniversary.

What that means is that five years ago today was the last time that any cancer was found in my body, not the last time I underwent treatment.

I was diagnosed with breast cancer on March 3, 2006 following a lumpectomy to remove what the doctors suspected was breast cancer. Indeed it was, though thankfully, only a Stage 1, the size of a blueberry, completely contained, no lymph node involvement.

Chance of being cured at that moment in time? 98 to 99 percent – particularly if I underwent a double mastectomy, four rounds of “just in case” chemotherapy, and an oophorectomy. Which I did. And it worked.

At least until the defective BRCA 1 gene I carry refired in the smallest bit of leftover, healthy, microscopic breast tissue, causing the tumor that wedged itself between my left breast implant and my reconstructed, “fake” nipple. That’s what grew into the grape-sized tumor that I detected on January 9, 2011, quite by accident.

Don, Theo and I had been out back, ice-skating on the lake. We came in when our ears were burning from the cold, our skate blades dull. I flopped on our couch and pulled up a blanket to warm myself. And that’s when it happened.

I brushed my forearm over my left breast as I was pulling that blanket up and over my chest when I felt it. A weird, marble-hard sensation through the sweatshirt I was wearing. I reached down under my sweatshirt and felt it again. Then I called Don over. He felt it. “Was this there before?” I asked him.

“No,” he said.

And just like that, we were thrust into this latest diagnosis, Stage 4 breast cancer. Just like that, our world was turned upside-down. Again.

Don and I, along with all of our friends and family, had been ticking off the days, weeks, months, years to that five-year, cancer-free date that would have been today. It wasn’t to be.

But that doesn’t mean today is not cause for celebration. I may not be cancer-free, but I am still here. I am still a Survivor! And a five-year Survivor at that!

Tonight, I will celebrate with the members of my girls’ group, the Six Pack, at Famous Dave’s BBQ. If you happen to be at Famous Dave’s tonight, look for me.

You’ll know me when you see me. I streaked my blonde hair Breast Cancer Pink — actually, fuschia — this morning.

Copyright 2011, Amy Rauch Neilson





A Flower or a Weed?

18 06 2009
For gene-positive women, the ovaries are both flowers...and weeds.

For gene-positive women, the ovaries are both flowers...and weeds.

Like many three-year-olds, when the fields of early spring are blanketed in golden yellow, Theo squeals in delight. He sees dandelions as “flowers,” and often picks Mommy a bouquet.

As grown-ups, most of us think of dandelions as weeds — undesirable. We spend time, money and energy attempting to irradicate them from our lawns.

But are dandelions a weed, or are they a flower? It depends, of course, on your perspective.

The same can be said of the ovaries of a woman who carries the BRCA 1 mutation. Her positive status not only predicts an 88 percent lifetime chance of getting breast cancer, but a 44 percent lifetime chance of an ovarian cancer diagnosis.

If she views her ovaries as what God intended them to be — the first stop in a chain reaction of events that brings about the conception of a miracle, a newborn baby — then they are flowers. If she sees them as the malevolent precursor to ovarian cancer — a cancer that is not only difficult to diagnose in its early stages, but difficult to treat — then she will view them as weeds.

Either way, it’s a clear view, all the way to the horizon. But what happens when to that young woman, that BRCA 1 carrier, the dandelions are both flowers and weeds?

That’s the predicament I find myself in. As I believe John Lennon once said, life is what happens while we’re busy making other plans. And so it was for my husband, Don, and I. Our “plan” was to have two children, about two years apart.

Part A of that plan went beautifully — Theo was born in August 2005. But Part B was put on hold when I was diagnosed with breast cancer in February 2006.

There were lots of “ifs” at that point in my life — but I am a strong believer that looking forward and making plans is the best perspective you can have when you’re in the midst of dire circumstances.

So, we looked toward the future and saw ourselves with two children. I went through in-vitro in the weeks between my double-mastectomy surgery and the first round of chemotherapy so that we could freeze embryos in case the chemo sent me into premature menopause.

I’m now a survivor — three years, three months, two weeks and one day — and you can bet I’m counting! And Don and I have decided to go for #2. If we are blessed with a second baby, fabulous. If we are not, we will move on in life, grateful for the beautiful, healthy little boy that we do have.

In the meantime, in the back of my mind, I am always aware that, as long as I have my ovaries, I am playing a game of Russian Roulette. The odds of ovarian cancer in a BRCA 1 positive woman increase dramatically as a woman moves into her mid-40s and beyond.

Though I am not there yet, I know that my risk is about 1 percent. That’s pretty low, but any risk is still a risk. A risk of cancer, a risk of leaving my beautiful little boy and loving husband behind. And that’s just plain scary.

Yet, as we’re too often reminded, everything in life carries with it some sort of risk. We get into a car and drive to the store, and we take a risk. So, we will play the odds for now, try for #2, see what happens. And, if it doesn’t happen in the next several months to a year or so, we’ll move on.

Moving on for me means going under the knife and having my ovaries removed. That’s the best way for a BRCA 1 carrier to eradicate her risk of gene-related ovarian cancer.

It means changing my perspective, of no longer viewing my ovaries as flowers, but instead, as weeds. And, like many of the decisions I must make as a BRCA 1 positive woman, it won’t be easy. But, I will summon the courage, do what needs to be done, and move on — thankful that I’m able to participate in this beautiful dance called Life.





Support in a Sea of Pink

30 05 2009

friends4race2006
My life was such a whirlwind of doctors’ appointments, tests, prayers, hope, and pure terror that Spring of 2006 that when she called, it took me a minute to catch on. It was my friend, Mollie. “I want to form a team for this year’s Susan G. Komen Race for the Cure,” she said.

And I was thinking, “That’s great, but why is she calling me to tell me this?”

Then it sunk in. Mollie wanted to form a team in my honor, and the team members would run or walk the 5K for me.

I was really touched.

Mollie took charge of the whole event, from naming our team — Amy’s Walking Angels — to spearheading the fund-raising (we raised $1,000!), picking up our registration packets, and getting everyone organized among the thousands of other walkers and runners that June morning in Detroit.

I was not quite eight weeks out from my double-mastectomy/reconstruction surgery, I had just gone through in-vitro so that I could freeze embryos in the hopes of having a baby post-chemo, and I had just endured my first round of chemotherapy.

I didn’t have to be there. Of course everyone would have understood — and they would have gathered, ran, and walked in my honor that morning.

But I wanted to be there. So, when the alarm when off at 6 a.m. that Saturday morning, we threw on our official Race T-shirts, got into the car and headed for downtown Detroit.

I didn’t think I could walk the entire 5K that day, which left me with two options — the One Mile walk or a ride on the Survivors’ Trolley. I opted for the walk. That way, I could hang with my team for at least part of the time.

But something happened along the way — something quite magical. As the starting line faded into the distance, I found myself becoming more and more energized with every step. When our team hit the One Mile marker and everyone expected me to turn around, I surprised them as well as myself when I didn’t. I kept going. And I crossed the 5K finish line with them.

I’ve often pondered about just what gave me that extra surge of energy that day. And I’ve decided that there isn’t one answer — but many.

It was my friends and my family. My spirits were buoyed by their strength and support and selflessness.

It was the thousands of strangers I walked among. The supporters wear white, while pink is reserved for survivors. In my pink T-shirt and baseball cap that day, I was a member of a very special sisterhood. We recognized each other with a nod, a smile, a brief exchange of words, a simple “God Bless You.”

It was the exchanges between me and other team members — brief, private, but telling conversations where one friend revealed details of his father’s battle with cancer that he’d never told me before and another told me how, when he’d learned of my diagnosis, he felt like he’d been kicked in the stomach — and began training for the 5K. Conversations that you’d never imagine could happen amid a crowd of thousands. But they did.

What I saw and experienced that day was so powerful that it keeps me going back every year for my “fix.” This morning — my fourth year of participation in the Race for the Cure — was no exception.

Along the way, I stopped to take a photo of a group of young girls waving hot pink pom-pons who were cheering for the walkers. As I got closer and focused my camera lens, they noticed my pink survivor T-shirt and began cheering very loudly — just for me. I was so taken aback that my rarely-seen shy side came out and I actually blushed.

But, as I rejoined my group and continued the walk, it also served as a reminder that in the battle of breast cancer, we are never alone.





A Simple Cup of Joe…

15 05 2009

Translation: I Don't Speak Icelandic

Translation: I Don't Speak Icelandic

It was late May, 2006, and I was caught in early morning rush hour, bumper to bumper with dozens of other commuters, waiting for my turn at the expressway on-ramp. Traffic was at a standstill, and as I looked around, I noticed that the people in the cars around me were, well, unhappy. They were frowning, or shaking their fists at other drivers, or just plain bored. Not me. This was one of the happiest days of my life.

A little over two months before, I’d been diagnosed with breast cancer. The doctor told me at that time that I likely had less than five years. My husband and I — parents of a then six-month-old baby — lived in the shadow of that diagnosis until further test results showed that my cancer wasn’t as advanced as initially thought. Six weeks earlier, on Good Friday, I’d undergone a double mastectomy. I’d just finished going through in-vitro, so that I could freeze embryos for a future pregnancy. And the following week, I would start chemotherapy.

All this, and I was happier than anyone else around me, as far as I could see. In fact, I was beaming — I could hardly contain myself.

Why? The reason was really quite simple and yet profound, all at the same time. Because for the first time in nearly three months, I was doing something normal. I was on my way to work, to a client’s office, to finish a newsletter. I was caught in rush hour traffic, drinking my favorite coffee — Tim Horton’s — fixed my favorite way — double-double. All of it was so very ordinary. And that’s what made it so extraordinary.

Oprah says 50 is the new 30. I say ordinary is the new extraordinary.








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