A Gathering of Women

Thursday night I did something I’ve never done before. I sat in a small circle of women and talked about what it was like to be diagnosed and treated for breast cancer. It was part of the local Komen affiliate’s monthly “Conversations for the Cure,” and instead of a featured speaker, this one focused on survivors sharing stories.

I blogged about support groups in February, with tips from professionals on what to look for in one. I never had the urge to join a support group during my treatment, and I didn’t suddenly develop the urge now. I had an ulterior motive in that I thought there might be an opportunity to mention my book, since you’re supposed to do that networking/marketing thing. As soon as I walked in and saw that small circle of metal folding chairs, I knew this wasn’t the time or place.

Walking into that room also induced a flashback. The only other time I’ve ever done anything like this was in the early ’70s, when one of the more progressive girls at my North Dakota high school started one of the consciousness raising groups so in vogue at the time. I don’t recall my consciousness being raised to any extent; all I remember is taking home a plastic speculum with advice to get out a hand mirror and learn to celebrate myself (which in hindsight seems ludicrous. It’s entirely possible, and preferable, to celebrate yourself without a DIY pelvic. What can I say? It was the ’70s.)

But I digress. In the here and now, our ages ranged from 70-something to 37. Our diagnoses ranged from stage 0 DCIS and lobular cancer to stage 2 and stage 3. One of us had opted for tram flap surgery and one for implants, while two had opted for prostheses. Three of us had single mastectomies, while two opted for the preventive bilateral. Two are dealing with lymphedema, with one wearing that compression sleeve I’ve come to recognize.

Two women had pain in their breasts before they were diagnosed, which surprised me, and them too. We had been under the impression that breast cancer sneaks up on you without pain (and sometimes it does).

I learned that the sentinel node biopsy apparently sucks even more than the stereotactic biopsy. (By the way, there was no consensus regarding the stereotactic’s general suckiness. Mine was by far the worst part of my experience, and I know others who agree. Some women here said theirs weren’t so bad.)

I had a sentinel node biopsy as part of my mastectomy, so I missed the pleasure of having a needle inserted into the nipple area to shoot dye into the lymph nodes. Not one woman had a positive thing to say about the procedure.

A couple of women talked about living with the fear of reoccurrence, that feeling of waiting for the other shoe to drop. A couple of us talked about how when you have early stage cancer, you feel sheepish even thinking of yourself as a survivor.

What struck me about this experience was how readily women share, and how good it feels to know you’re not alone. Freud called it “the talking cure.” While he was referring to formal psychoanalysis, there’s no denying the healing power that kicks in when women gather to share stories.


Horseshoes, Hand Grenades and DCIS

I had never heard of ductal carcinoma in situ before I was diagnosed with it. Nor did I have a clue that breast cancer could be classified as stage 0; I only thought it came in stages 1 through 4. And I’m far from alone; most people I talked to had never heard of it either, including a couple of experienced healthcare PR pros.

This point was brought home to me last weekend, when I did a book signing at “Bodies: The Exhibition” in Omaha. The most interesting moment was when an older, upper-middle-class couple came up to me. The man spoke; the woman stood mutely at his side as wives of that generation are likely to do.

“We were just wondering about your title,” he said. I explained that From Zero to Mastectomy was a play on from zero to 60, and before I could mention the subtitle’s reference to stage 0 cancer, he said, “Well, we were just wondering where that came from because there is no such thing as stage 0.” He looked at me and waited, with a look of absolute confidence on his face.

I looked over at his wife; no help was forthcoming there. She had the frozen smile of someone who’d been through this hundreds of times on who knows how many topics. So I just said, “I never heard of it either until I was diagnosed with it.” He didn’t respond; he just turned away and off they walked.

I don’t know what his deal was; retired professor? Doctor? Professional hair-splitter? I do know that DCIS is noninvasive because it’s confined to the milk ducts. Some call it precancerous. That’s the good news. The bad news is that it can become invasive if not treated, and treatment is the same as for invasive cancers. DCIS has varying degrees of aggressiveness, with some  types more likely to become invasive. You need to go over your specific circumstance with your doctor, weigh your risk tolerance, and make the decision that’s right for you.

As to whether it’s “real” cancer, my oncologist used that word one day, after I had become comfortable with him and with my decision to get a mastectomy. He told me I’d need to come back every six months for regular checkups, and said it would be every three months if I had “real” cancer.

He wasn’t being snarky, so I pounced and said, “It’s close enough! Someone sign me up for the fake mastectomy!” We laughed about it, and that’s become our running joke.

So maybe the old man was right. If you believe cancer by definition is invasive, then perhaps stage 0 is an oxymoron. But while the cancer may be “fake,” the treatment is very real. There’s an old saying, “Close only counts in horseshoes and hand grenades.” Perhaps we should add DCIS to that list.

Is There a Place for Humor in Breast Cancer Advocacy?

Last year it was the “Save the Boobs” video. This year it’s the “I (Heart)Boobies” bracelets.

Some people were very offended by the video’s slow-motion close-ups that were more reminiscent of a beer commercial. Now, some schools are banning kids from wearing the bracelets. And in a recent post on Salon, Tracy Clark-Flory made the eloquent case that we’re more than the sum of our body parts, and recounted her mom’s battle with metastasized lung cancer.

I agree completely that we’re more than the sum of our breasts or whichever body part has been affected by cancer. I’m less in agreement that a humorous approach isn’t the way to go. Isn’t the point of any messaging to tailor it to the audience?  Humor is a way to reach people who may be turned off by traditional public service announcements. We may be getting some people to think about this for the first time.

And yes, it’s abstract for them in a “Save these,” not “Save her” kind of way, but life-threatening illnesses are abstractions for most of us until we’re faced with them. That’s even more true of the young. Does humor work better getting abstract concepts across to this audience? Just asking; I have no clue if there’s research out there to support how well humor works in an awareness campaign.

I’m not sure I see a lot of difference between the “boobie” bracelets and women sporting T-shirts that say “Yes, these are new boobs–the old ones tried to kill me” or “Save the TaTas.” Personally, I wouldn’t wear the bracelets or the shirts. But I appreciate the humor, just as I appreciated the approach of the Save the Boobs video. I thought the way they subverted the genre was genius.

I ‘m a firm believer in the power of humor, and I leaned on it pretty heavily while I was undergoing treatment. Sometimes the cancer journey is so absurd all you can do is laugh. Other times it flat-out sucks. At those times, humor is one of the few weapons we have.

Football 101: Not Your Typical Breast Cancer Fundraiser

(Note: In honor of the Cornhuskers winning their season opener yesterday, I’m reposting my Football 101 entry.  And might I add we have a most promising freshman quarterback in Taylor Martinez.)

I’ve been to several breast cancer fundraisers since I was diagnosed in 2008, but I’ve never been to anything like the one I attended on Wednesday. It was Football 101, put on by the Bo Pelini Foundation and Southeast Nebraska Cancer Center at the University of Nebraska Hawks Championship Center and Memorial Stadium.

In case you don’t live in Nebraska or follow college football, I should tell you that Bo Pelini is the head coach of our Cornhuskers football team. I should also tell you that college football is more than a tradition in Nebraska. It’s a religion, and I’m a believer (or Boliever, as we like to say here. The guy is a rock star.)

The fundraisers I’ve been to before were of the women sitting around eating and listening to speakers variety. I’m not knocking eating; it’s one of my favorite pastimes. But this all-day event was different. Here you had a bunch of men who look great in shorts showing 900-plus women (and a handful of men) the finer points of strength training, throwing, catching and tackling. I left the throwing and catching to others; the drills where you ran into things and knocked them over were more my speed. (I do that without trying half the time anyway.)

The coaches were funny and wonderful but we learned things too. And when we finished each drill, they all had us huddle, do their chants of “D Line!” or whatever, and touch our raised hands like real players. Coach Sanders even had us all jumping up and down. I’ll sure be thinking of that the next time I’m at a game.

There were also times we sat and listened, learning about offensive plays with really weird long names like Winston Zebra Cobra Something, and then watching the play films. I kept wondering how the quarterbacks would remember the names, much less the moves.

And there was some plain silly fun, like Coach Bo and his brother Carl (our defensive coordinator) giving each other the kind of grief only brothers can give, or the players doing their version of American Idol. I wasn’t sure what to expect from this event since it was my first time, but I didn’t think I’d start the day laughing so much.

If we started the day laughing, we ended it in awe.  All 900-some of us got to do the Tunnel Walk that our guys do before every home game. They crank up the Alan Parsons Project music and show them coming out of the tunnel on that huge screen, and I get goosebumps every single time.

The day ended with all of the breast cancer survivors getting to go back to the locker room with Coach Pelini for a private reception and a chance to get our pictures taken with him. The only house rule that day was to not ask the coaches for pictures or autographs, so this was huge.

His players usually don’t repeat what was said in the locker room so I won’t either, but it was one of the most special things I’ve ever been a part of. He kept thanking us, but he has no idea what a privilege it was to be there. Thanks, Coach.