Do Patient Empowerment & Squeamishness Mix?

This post originally ran a year ago. I dusted it off because I was looking up medical terms online last night and encountered some photos that brought the old squeamishness back. -Jackie

 Patient empowerment is all the rage lately. While I distrust the way the “e” word sometimes verges on ideology, I’m all for learning what’s happening when we get that front row seat to medicine thanks to cancer or another big diagnosis.

But how best to learn if you tend to be medically squeamish? My previous patient experience was limited to an annual visit, with a handful of garden-variety illnesses and the inevitable screening tests required once you hit your 40s and 50s. I’ve never had a problem with those tests, or with needles, but once I learned my breasts were going to be the focus of a cancer adventure I felt a bit queasy.

The thing is, I can’t even stand nipple rings. Back when my husband Bruce and I used to take his Harley to the big bike rally in Sturgis, S.D., I averted my eyes a lot. I found myself doing the same thing now as I loaded up on breast cancer books. How do those DCIS cells act? Sure. An illustration of a nipple floating off into space during a mastectomy? Not so much.

I wanted to know what to expect without getting too much detail, if that makes any sense. So while I learned enough to know I wanted implants instead of tissue replacement surgery for reconstruction, I didn’t read about surgery details, and I couldn’t look at before and after reconstruction photos available online.

I had gone through the mastectomy and first-stage reconstruction before I became curious about things like how my surgeon was able to balance tissue removal and skin preservation during the mastectomy, or how my plastic surgeon was able to recreate a nipple.

Believe it or not, I actually watched him do it, since it only required local anesthetic. If you had asked me five years ago if I wanted to watch myself getting a nipple built, I probably would have yakked on your shoes. But this was my fifth surgery in nine months, so I had gotten used to it. And I’m really glad I watched because it was fascinating.

But that’s me, and it happened over time. You may want every last detail, or you may prefer letting the experience wash over you. And there’s nothing wrong with that. I would recommend learning enough to be able to make an informed treatment choice, and giving yourself enough time to make that choice.  Whether you ever learn what they do with those scalpels or watch them do it is totally up to you.

For the record, nipple rings still gross me out.

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Our Cancer, Ourselves

Forty years ago this month, Our Bodies, Ourselves hit bookstores. The 40th anniversary edition recently came out, and last night NBC Nightly News interviewed women ranging from author and screenwriter Nora Ephron to famed breast surgeon, author and Army of Women founder Dr. Susan Love.

If you weren’t around then, it’s hard to understand just how groundbreaking this book was. We were just starting to talk openly about things like reproductive health and birth control, and it provided a road map. It’s been published in 25 languages, and Time magazine named it one of the most influential 100 non-fiction books. An updated 40th anniversary edition was recently published (and it’s available at a 70 percent discount to health clinics and non-profits.)

I was 15 when the original version was published. I never thought it would be around for 40 years, or that I would be purchasing a copy of Our Bodies, Ourselves: Menopause to try to make sense of that next female frontier.

The book providing the first real road map for breast cancer was the still-excellent First, You Cry by Betty Rollin, which came out five years later. Although the fall crop of breast cancer books has become as perennial as pumpkin harvests, I think First, You Cry is still the gold standard. Not only is it an unflinching look at the roller coaster of emotions she experienced, it also provides a look into how much medicine has changed. I spent the night in a short-stay unit after my mastectomy; she was in the hospital for a week after hers.

When I look back on what’s changed, I’m glad women’s health issues and cancer are no longer in the shadows. I’m glad we educate ourselves and share our stories with each other and stand up for ourselves as patients and as women. I’m grateful for social media and the community I’ve become a part of.

But when I look at how our society has changed in 40 years, it seems that while there is no shortage of people who are willing to talk, fewer are willing to really listen. A lot of today’s political discourse seems to have hardened into ideology. I see a bit of that in some health discussions too, mainly around patient empowerment. And I find it interesting that patient empowerment is often equated with feminism. At this stage of my life, I’ve become wary of “isms.”

Would I go back to the way things were then? Absolutely not. I’d just like to see a shift to more listening and respectful disagreement in our public discourse.

Do Patient Empowerment & Squeamishness Mix?

Patient empowerment is all the rage lately. While I distrust the way the “e” word sometimes verges on ideology, I’m all for learning what’s happening when we get that front row seat to medicine thanks to cancer or another big diagnosis.

But how best to learn if you tend to be medically squeamish? My previous patient experience was limited to an annual visit, with a handful of garden-variety illnesses and the inevitable screening tests required once you hit your 40s and 50s. I’ve never had a problem with those tests, or with needles, but once I learned my breasts were going to be the focus of a cancer adventure I felt a bit queasy.

The thing is, I can’t even stand nipple rings. Back when my husband Bruce and I used to take his Harley to the big bike rally in Sturgis, S.D., I averted my eyes a lot. I found myself doing the same thing now as I loaded up on breast cancer books. How do those DCIS cells act? Sure. An illustration of a nipple floating off into space during a mastectomy? Not so much.

I wanted to know what to expect without getting too much detail, if that makes any sense. So while I learned enough to know I wanted implants instead of tissue replacement surgery for reconstruction, I didn’t read about surgery details, and I couldn’t look at before and after reconstruction photos available online.

I had gone through the mastectomy and first-stage reconstruction before I became curious about things like how my surgeon was able to balance tissue removal and skin preservation during the mastectomy, or how my plastic surgeon was able to recreate a nipple.

Believe it or not, I actually watched him do it, since it only required local anesthetic. If you had asked me five years ago if I wanted to watch myself getting a nipple built, I probably would have yakked on your shoes. But this was my fifth surgery in nine months, so I had gotten used to it. And I’m really glad I watched because it was fascinating.

But that’s me, and it happened over time. You may want every last detail, or you may prefer letting the experience wash over you. And there’s nothing wrong with that. I would recommend learning enough to be able to make an informed treatment choice, and giving yourself enough time to make that choice.  Whether you ever learn what they do with those scalpels or watch them do it is totally up to you.

For the record, nipple rings still gross me out.