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.

3 Words to Banish: Coulda, Woulda, Shoulda

2011 was full of news on the breast cancer front. One item that resonated with me was discussion of a new gene test that could pinpoint which women would be most likely to benefit from radiation for their ductal carcinoma in situ (DCIS), meaning they could also pinpoint who would benefit from a wait and see approach. By definition, DCIS is confined to the milk ducts. The question is will it mind its own business and stay there, or will it escape and start to spread?

DCIS is so new on the scene that it’s not well understood yet, and doctors would rather see their patients be safe than sorry when it comes to treatment. I went the safe route when I opted for a mastectomy over radiation (trust me, it wasn’t an easy choice, at least for me). So the obvious question is, what if I could have been spared either one? What if mine had been slower moving?

I’ll spare you the details of my decision-making process (they’re in my book, ahem) but I didn’t believe my DCIS was going to stay put, then or now. I realize there’s such a thing as cognitive dissonance (what most of us call sour grapes) but I don’t think that’s the case.

And besides, that’s not the point. Whether my belief system can handle this new information or not, we’re going to see a lot of this with breast cancer or any cancer. We also learned recently that perhaps they don’t need to remove so many lymph nodes to get a good feel for whether cancer has spread. I’m sure women with lymphedema are less than delighted by that news. Such is life. Such is medical progress. Imagine how we’d all feel if we had been operated on before they discovered anesthesia.

The point I’m trying to make is that cancer is no place for “Coulda, woulda, shoulda.” We do the best we can with the information we have at the time. Crystal balls are not retroactive.

Thinking about this also got me thinking about the “three words” concept for the start of the new year. A lot of people, including me, blogged about three words to focus on instead of making resolutions. I’d like to suggest that we also consider three words to banish from our thinking in 2012 and these three are at the top of my list. Not just for how I handled my cancer, but how I live my life.

Cancer can make you wonder what you want to do with this life you’re so lucky to have. Getting older does the same thing. 40 is called the old age of youth and 50 the youth of old age. I crossed over into the youth of old age just over six years ago. I do not intend to get to the end of my life thinking “Coulda, woulda, shoulda.” And I hope you don’t either.

3 Words and a New Year’s Roundup

I love the idea of a fresh start in the new year. I said in a previous post that it’s the one time of year we’re all like little kids, convincing ourselves that what we feel at this golden inspired moment will last forever and ever. So we make resolutions and invariably fail to keep them. They feel like homework and I gave up on them years ago.

I found some wonderful alternatives this weekend that I want to share with you. Brenda posed a great question at Breast Cancer Sisterhood: Why only focus on the start of the year? Every day that you draw breath offers the chance for a fresh start. I like her thinking.

I also like Dr. Greg Smith’s thinking. A psychiatrist, he spends a lot of time taking patient histories and focusing on the past. His radical idea for the New Year is to focus on the future and what’s possible. No resolutions here. And please read his To Thine Own Self Be True, about finding and honoring your inner voice. You won’t regret it. 

Phil Baumann posted these great thoughts on his New Year’s wish that we look at life as it is right now instead of focusing on the past or future. (His Health Is Social blog is also worth checking out.)

Marie at Journeying Beyond Breast Cancer posted the wonderful An alternative new year’s resolution in which she picked three words to guide her in 2012. She was inspired by Philippa at Feisty Blue Gecko, who has been using the three-word approach to the new year since 2009.

I love this idea so I picked three words to guide me through the year. They are:

Create. Specifically, poetry. I need to write more and better poems. This will require a commitment of both time and stillness, things that have been in short supply. When I took a break recently from what Greg calls the 21st century hustle and bustle, I managed to write a poem. I don’t think it’s a coincidence.

Nurture. I loved it when Marie said the problem with resolutions is their focus on what we don’t like about ourselves, and how we should find something we want to nurture within ourselves this year. This ties in with my first word in that I want to nurture my poetic craft. But I also hope to nurture my relationships and my health, among other things.

Appreciate. Appreciating and nurturing go hand in hand. And along with appreciating the people around me (including me!) I want to remember to appreciate just how very precious life is. As we get older, the losses start piling up. Time with our loved ones is a blessing, and when we run out of time, the memories that sustain us are another kind of blessing.

I wish you many blessings and much joy in the year ahead.