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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Status Update: Results Today

31 03 2011

I’ll go into HOW I finally got an appointment to get my results in a future blog.

Just know that after hours of trying, I finally found a way to get through. It emotionally and physically wiped me out, but I will not have to wait until Monday. No patient should have to go through that, least of all a Stage 4 cancer patient waiting for pivotal results.

I have an appointment at 3 p.m. today. So much hinges on the results of this first CT Scan since I began chemo on Feb. 1.

I’ll let you know as soon as I know.

Please pray for miraculous results.

Copyright 2011, Amy Rauch Neilson





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.





Guest Post: Pumas in the Crevasse

24 05 2009

Guest Blogger and Survivor Gene Rooks tells why she decided against reconstruction.

Guest Blogger and Survivor Gene Rooks tells why she decided against reconstruction.

by Gene Rooks

Knowing Amy through our IClub connections, and sharing the breast cancer experience, I had to laugh at her stories about being naked in Iceland (see Naked at the Blue Lagoon post), and the decision to go with “innies” or “outies.” I also applaud her decision to go for reconstruction the whole way — including the outies. But I am a whole lot older than Amy, and I chose a different route.

Unlike some of you, I don’t carry a breast cancer gene. But at the age of 73, during a routine mammo, a suspicious shadow showed up. I went for the return screening on Dec. 5, and as the technician, and then the radiologist, came in and went over and over me with the sonar, I just knew something was there. At the same time, I had a feeling of complete peace come over me, as I also knew it was in God’s hands, and I would be all right, no matter what the progress of the disease might be.

Things happened so fast, I really didn’t have time to stress out over it. An immediate biopsy was ordered, and I reported to the doctor on Dec. 20 for the results. My dear husband was with me, very apprehensive. My two daughters, ages 45 and 50, were on tenterhooks about the possible diagnosis.

My surgeon was very capable, but not especially sensitive. He walked into the room and announced, “Well, it is cancer, and we will be doing a modified radical mastectomy.”

I wasn’t surprised, but I was speechless. I had expected he would slide into the diagnosis and discuss options. But my sweet husband, in utter shock, sputtered, “But, what will they put in its place?”

Now I found my voice. Quite firmly I said, “Nothing!” It’s funny that the initial discussion was about reconstruction rather than than the procedure itself.

The doctor assured him reconstruction could be done at the same time as the surgery, and they surely had enough fatty tissue to work with. But they also would need to reduce the size of my other breast, so they would match. My surgeon said, “You wouldn’t want an 18-year-old reconstructed breast next to a 73-year-old one!”

I again reiterated that there would be no reconstruction, as I wanted nothing to do with moving around any more tissue than necessary, and certainly not a surgical attack on the other breast.

All this of course was right before Christmas, with its usual full slate of activities and long to-do list. Again, I didn’t have time to stress, and didn’t. There was not a tear shed by me, or even any feeling of anxiety.

Surgery was scheduled for Dec. 30, and I was home the next day. A lovely way to start the New Year, but we had some remodeling scheduled for the kitchen and dining room, and we went right ahead with it, so I had plenty to keep on my mind beside my healing process.

The healing process actually wasn’t as smooth as the surgery itself. Fluid under the skin kept building up, even with the “ticks” in place to drain it. I had to have more installed, and when the skin eventually adhered, it developed a deep fold.

I was really upset by that. I complained to my surgeon that there very well could be pumas in that crevasse. He looked at me like I was nuts; he was too young to remember the Smothers Brothers. (For readers also too young to remember, they had a hilarious routine, the punch line was, “There are pumas in the crevasses.”)

He offered to do a correction, but I thought not. I did some research and found a plastic surgeon willing to do surgery to modify the scar area. It is strange that Medicare and insurance companies are more willing to pay the higher price for reconstruction than a much simpler scar modification, but I found one, and he did a wonderful job.

So, Amy, it is probably just as well I didn’t get to accompany the group to Iceland. I would really have gotten some stares with my original, now 76-year-old breast, and a nice, smooth, flat surface on the other side.

But I am happy with it, my wonderful husband doesn’t have any problems, and my clothes work just fine with my store bought silicone gel boob. And, most importantly, I am into the fourth year, all clear.





Innies or Outies?

15 05 2009

My three-year-old son's belly button. Definitely an Innie...

My three-year-old son's belly button. Definitely an Innie...

Here’s a question I thought I’d never have to answer again once I left the gradeschool playground — Innies or Outies? That was the question at recess on days when the swings and the monkey bars had become a little too hum-drum. Not only did you have to declare yourself as one or the other, but you had to prove it by lifting your shirt and showing your belly.

It was a little like Dr. Suess’s story of the Sneetches — a group of yellow, beach-dwelling creatures who distinguish themselves from one another by the green stars on their bellies. Those with the green stars are part of the “in” crowd while those without…well, I need not go any further — I’m sure you remember the wrestling for top dog that is just a part of growing up. And, like cooties and indoor recess on rainy days, when I moved on to junior high, I was happy to leave that part of my life behind.

Fast-forward to 2006. It’s a cool autumn day in November, two weeks before Thanksgiving. I’m sitting in one of the examining rooms at my plastic surgeon’s office, perched on the edge of the examining table, wiggling around and trying to get comfortable as I sit on a fresh piece of the ever-present roll of crinkly white paper.

“You’re going to need to decide whether you want innies or outies,” he says to me as he’s looking over my paperwork. About 30 seconds pass before he realizes I am sitting there in stunned silence (he has known me long enough to realize that silence is not something I’m known for). He looks up at me over the the top of his glasses.

“You know, innies or outies,” he says, pointing in the general direction of my breasts in way of explanation. I look down at them. They are only partially covered by my ill-fitted gown. I finally realize what he’s talking about. My nipples.

“Innies or outies?” I say quizzically.

“Yes, you get to choose. But remember, whatever you choose — that’s the way they stay.”

So, that night at home, I broached the subject with my husband, Don.

“Innies or Outies, eh?” he said. “Hmm.”

“What do you think?”

We debated the pluses and minuses of Innies and Outies but in the end, it was clear the decision had to be mine. Choose Innies and I’d have the freedom to forego bras at my leisure –because (BONUS!) fake boobs never sag. Choose Outies and they’d look more “real” — but I’d have to cover them or they’d poke through the light-weight fabric of summer tank tops. Though that seemed like a bit of extra trouble, truth was, I wanted my new breasts to be as close to their predecessors as possible. And so, I chose Outies. And though I often look down, I’ve never looked back.








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