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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Guest Blog: BRCA2 and Don’t Know What to Do

10 06 2009
Guest Blogger Jenny Fink -- who is BRCA 2 positive -- faces some tough decisions.

Guest Blogger Jenny Fink -- who is BRCA 2 positive -- faces some tough decisions.

Please meet Jenny Fink, a BRCA 2 carrier, who pens Blogging ‘Bout Boys. (Check it out — I’m guest blogging over there tomorrow.)

Breast cancer has haunted me my entire life.

From the time I was little, I knew that breast cancer stalked my family. My maternal grandmother died of breast cancer when I was just five, and one of my maternal aunts had breast cancer sometime when I was a kid. I don’t remember the details, but I do remember my mom ducking into the bathroom to see her scar.

My own mother didn’t develop breast cancer until I was an adult, a married twenty-something living out-of-state. Still, I remember seeing my mother’s mastected breast, dyed green and slice for analysis. It’s not the kind of thing you forget. (My mother, a nurse, specifically asked to see the samples, and I was in the room when they wheeled them in.)

It wasn’t until she was diagnosed with ovarian cancer ten years later that we learned about our genetic mutation. Despite the fact that we knew we were at risk for breast cancer, no one had ever bothered to inform us that ovarian cancer is sometimes linked to hereditary breast cancer.

When we learned about the link between breast and ovarian cancer, I pushed for genetic testing. I’d had enough of health care professionals pushing my concerns under the rug. If I tested positive, I reasoned, I’d have absolute, solid proof of my risk status – and no one could ever again brush off my concerns by saying, “Yes, but has your sister had breast cancer?”

That was a little over two years ago. Finding out I had a BRCA2 mutation was really no big deal; strange as it may sound, for me, the bigger deal would have been finding out I was negative.

Doing something about it has proved to be a little harder.

First, I was nursing. My youngest child was not yet a year, and I was determined to breastfeed him to completion. Continued breastfeeding, I reasoned, was best for both of us.

Now, though, he’s been weaned for the better part of year. It’s time to schedule a screening, but our health insurance recently changed from full coverage to a high deductible ($5,000!) policy. I’d scheduled an appointment at the regional academic medical center to discuss screening and my options, but cancelled it when I realized I’d be paying out of pocket. My plan now is to wait til my annual physical (covered at 100%) and to ask my family doc to recommend a mammogram (which, I think, should also be covered.) As for the MRI I should probably have – well, I’m not sure how I’m going to pay for that just yet.

My situation is not unique. How many of you have a mutation, but limited insurance coverage?

I’m not sure yet what I’ll do regarding prevention; if I’ll try Tamoxifen (though I recently learned that some antidepressants basically disable Tamoxifen) or if I’ll schedule preventive surgery. The scary thing is that I’ve already calculated that surgery may be the cheaper route: if I decide on a prophylactic mastectomy and oophorectomy, I’m pretty sure I’ll meet my $5,000 deductible. If I simply decide to do screening each year… each year, I’ll have to pay $1,500 out-of-pocket for an MRI.

How do you cope financially? Has insurance coverage (or lack of coverage) influenced your healthcare choices?








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