Support in a Sea of Pink

30 05 2009

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.

Oh Baby! Do We Dare Go For #2? (Part I)

21 05 2009
Theo, October 2005, age six months

Theo, October 2005, age six months

Ever seen that list that shrinks pull out when you’re stressed to the max? It’s about the length of a medieval scroll and on it is the list of life’s biggest stressors — the ones that probably landed you on the couch in their office in the first place.

There are the life events that you can’t control — like the serious illness or death of someone close to you. Then there are the ones that you can control, the ones that are considered “happy” stressors — like getting married, buying a house, getting a new job — and yes, having a baby.

If the thought of becoming a parent has ever seriously crossed your mind, you are familiar with the barrage of questions that filter through your gray matter day and night — particularly when you can’t sleep. Or perhaps they’re the reason you’ve got insomnia.
Will I be a good parent? Can we afford it? Does this new creature come with an instruction manual?

When you’ve been identified as a carrier of a breast cancer gene (BRCA 1 or BRCA 1), there’s a second list of questions you have to answer — even more so if you’re a survivor. At the top of the list is this one:
Could a pregnancy trigger a recurrence?

When my sister, Julie, who was diagnosed with breast cancer at the age of 26, posed this question post-treatment, the doctors felt quite confident that it could — and discouraged her from considering the idea. But that was twenty-some years ago, and a lot has changed.

Conventional wisdom — based on the brave women who not only went on to have babies post treatment, but volunteered for medical research studies — tells us that survivors who go on to have a baby do not have a higher risk of recurrence than those who don’t. In fact, for some reason that the medical community cannot put its finger on, these women actually have a slightly lower risk of recurrence. Go figure. If you want to find out more, check out the study:

So, we have the answer to the first of many questions we need to answer, with brutal honesty, before we make our decision. Next up is perhaps the toughest question of them all:
Is it ethical?

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.

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.

Naked at the Blue Lagoon

4 05 2009

The Blue Lagoon, Iceland

The Blue Lagoon, Iceland

Think back to the first time you met your coworkers. Do a quick rewind and pull the image up in your head. Got it? Good. Now, replay the same image – only this time, you’re naked…and so are they.

You see, I’ve never met my coworkers, with the exception of the company prez. I’m a telecommuter; I work from my house just outside of Detroit. ICLUBcentral’s offices are so close to Harvard that you can open a window, throw a rock and hit the side of an esteemed Ivy League building. Or so I’ve been told.

So, when ICLUBcentral invited me and my hubby to join them for four days in Iceland, I couldn’t say no. Certainly it would come with adventure and a chance to bond with my coworkers. Little did I know how right I was.

We landed at the Keflavik, Iceland airport at 6:30 a.m. local time – 2:30 a.m. Detroit time. My hair – carefully primped before boarding the first of three planes 11 hours earlier – was flattened and stuck to the side of my head. My ears were so plugged that despite my best attempts to clear them by chewing like an enthusiastic cow, all of the people around me sounded like they were talking underwater.

As we couldn’t check into our hotel until 2 p.m., our group of 18 hopped a tour bus and headed for The Blue Lagoon — the most famous of Iceland’s hot springs. It’s also one of the country’s most prized natural resources. To keep it that way, every person who enters the electric blue, mineral-rich waters is required to shower first – nude.

I thought I could circumvent this requirement. My husband claims that my Superpower is assuming that the rules don’t apply to me…a tactic that has worked without fail, until now. After I change into my bathing suit and begin heading toward the showers, I’m stopped by a tall, thin, light-haired Nordic woman.

“You must shower nude before entering the pool,” she says, glancing down at my bathing suit.

I return to the lockeroom, which, unlike many European countries, is at least split by gender. I take off my bathing suit, making my best effort to conceal my body with a towel. But, when I reach the showers, my cover disappears.

There I stand, naked, in front of my female coworkers — whom I’ve known for a grand total of 58 minutes. Everyone’s uncomfortable — this isn’t exactly what we expected — and we all avert our eyes. But I notice that more than once, a pair of eyes scans my breasts.

They look pretty good for fake breasts, I think. My plastic surgeon once told me that, in a lockeroom setting, no one would ever know. Which would be true, if it wasn’t for my body’s tendency to scar rather severely.

The next time I notice someone trying not to look, I decide to break the ice. “I had breast cancer,” I say. “These puppies are the new and improved model.”

It works. Someone starts talking about how her Mom was also a breast cancer survivor…and that she hadn’t yet decided whether or not to get reconstruction. What did I think…

And so there it is. And though it wasn’t my plan, not yet, not so soon, it’s out there. The conversation has started and I step outside of myself. Because a big part of the responsibilty of a survivor comes in the sharing of information.

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