Jodi Jaecks, superstar survivor. Photo by Kelly O./ The Stranger
It’s been a big week for me with regard to breast cancer news. Not my own personal breast cancer news — nothing much has changed there — but stories I’ve reported on. First, my editors at msnbc/TODAY.com asked me to write about Jodi Jaecks, the Seattle breast cancer survivor who went up against the Seattle Parks and Recreation Department over her right to swim in their pools — sans bathing suit top.
Jodi, who I met up at Cancertown a few months back, had a double mastectomy in March of last year, followed by additional lymph node surgery and a few rounds of chemo. Like many of us, she’s now trying to reclaim her life — and her athleticism — while dealing with the nasty side effects of her treatment: namely lymphedema and chest wall neuropathy.
Thanks to the lymphedema, a lot of activities are off the list. But swimming, a suggestion that came up during a post BC treatment support group we both attended, seemed like something that might be both active — and therapeutic. I’m not a swimmer (hate getting wet) but the thought of water splashing against my aching chest sounds incredibly soothing.
Jodi, who doesn’t wear prostheses and isn’t going in for reconstruction, checked out Medgar Evans Pool in Seattle’s Central District then — out of courtesy — told the pool people she would be swimming there without a top. When you don’t have boobs or nipples and you don’t feel the need to fake it, why bother, right?
Well, the Parks people decided they needed to think about that. Which they did for a couple of months, leaving Jodi twisting in the wind. Finally, a few weeks ago, they told her swimming topless (despite the fact she has no “top”) was unacceptable and that she had to wear “gender-appropriate swimwear.” I suggested she show up in some early 1900s Victorian swimsuit– complete with parasol — but she wisely decided to go to the Seattle alternative newspaper, The Stranger, instead. They broke the story this last Wednesday. By Thursday, her story had gone viral — hitting both local and national audiences (including my readers at msnbc/TODAY.com). By Thursday, the Seattle Parks and Recreation Department had also decided to change their tune. Now, not only Jodi can swim there topless, but other breast cancer survivors will most likely be able to do the same in days to come.
I know I’m supposed to be the ever-objective journalist but I’m also somebody who has to look at a surgery-ravaged body every day and tell myself that I’m okay, that I have nothing to be ashamed of, that I’m still beautiful and normal and acceptable. It’s not easy to do this, especially in a society where breast worship is practically an organized religion. Policies that make cancer survivors — or anyone who’s a little different — feel ashamed of their bodies and their determination to heal need to be identified and overhauled. And if necessary, just plain jettisoned. Jodi’s willingness to come forward and tell her story helped do just that.
“It started as a personal fitness issue but once they said no to me, it became a far greater overarching political issue,” she told me when I interviewed her. “Ultimately, I just want to remove the stigma that women with breast cancer have to endure.”
Cheers to that, my friend. Cheers to that. It’s hard enough facing the mirror — and the fear — without some bureaucracy making you feel like a freak. Breast cancer awareness isn’t about pink power tools and fun runs, people. It’s about knowing what a double mastectomy looks like. It’s about learning about the side effects of what is still an incredibly barbaric surgery. It’s about letting survivors do whatever they need to do to heal. Not off in some dark corner full of well-worn ribbons. But out in the light — where it counts.
One more note: I think it’s appropriate to send a shout-out to Christopher Williams, the superintendent of the Seattle Parks and Recreation Department (and a cancer survivor) who only found out about Jodi’s treatment this week but quickly took steps to right an egregious wrong.
Have you been discriminated against because of your breast cancer — or any cancer? If so, I’d love to hear about it.
Also, stay tuned for part two of my exciting breast cancer news-filled week, where I talk about my story regarding the new fat grafting method of breast reconstruction.
Double Whammied 
I saw both of your stories yesterday. After reading the one about fat grafting, I thought “Wonder if Diane knows about this option” – then I saw that YOU wrote the article! Ha ha 🙂 Great aticle! I will be taking it to my next PS visit to ask if it might be an option for those of us who have implants. Maybe instead of new implants in 10-15 years, we could do the fat graft instead. Here’s hoping!
I would hope that in 10-15 years, fat grafting will be standard operating procedure (so to speak) for reconstruction. Better yet, in 10-15 years, they’ve figured out a way to treat breast cancer in a way that doesn’t involve lopping off our girls.
Great story!
I had the fat grafting (if you’re talking about the TRAM procedure where tummy fat is transplanted to make breasts) it was a great success for me and many others, but it would seem that this is not available to everyone.
This fat transfer/fat grafting is a new procedure, sort of a third option (if you count tissue expanders/implants as option 1 and “flap” procedures as option 2). I’m not eligible for a tram or a DIEP flap (not enough stomach fat – plenty on my hips, though) but have talked with women who LOVE the results of theirs.
She’s setting a tone that others can follow. Her courage just fills me up. There should be no shame in the scars, and that’s something I’ll try to remember next time in the ladies change room!
Catherine
http://www.facingcancer.ca
Thanks for the note and yes, Jodi is definitely setting an important tone. Am happy that her story is getting such good press. It’s going to help women across the country – from a self-esteem standpoint and hopefully, from a public policy standpoint. As more and more people are exposed to mastectomy scars, it’ll reduce the stigma of this crappy disease and help people see how prevalent it is. More importantly, it just might help inspire researchers to find a frigging cure.
Obviously the champs at the pool haven’t attempted to find gender appropriate swimwear for women with double masectomies…..I, like Jodi, have had a bilateral and am saying no to recon, before a trip to Latin America I tried to find swimwear that would work with a really flat chest and it doesn’t exist as far as I could see – even BC friendly clothiers were only offering suits that took prosthetics. One of the most empowering things I did after my surgery was go to the Olympic Spa north of Seattle (well, that and the Saint Agatha of Sciliy halloween costume 2 weeks after surgery), as I live around the corner from Medgar Evars a swim might need to be in my near future as well. Go Jodi for standing up for your and all our rights!
I’ve heard from a handful of women now about the difficulty of finding nonprosthetic clothing/swimwear. Does anybody have any recommendations for our “sandbag” free sisters? If so, please pass them along! Seems like this is a big niche that needs to be served. I believe the reconstruction rate is only 35-40%.
Also, kudos to you for doing the Olympic Spa post surgery. My girls (or what’s left of them) haven’t had much exposure since my surgery but I sometimes think about how freeing it would feel to run or box without the gummi boobs. Maybe one of these days …
I have had a double mastecomy and chose not to do reconstructive surgery. As I love the sun and swimming in the ocean, I was bummed to see the lack of swimsuits that would address my needs and still be stylish. By chance I was watching a swim event on tv and noticed that the competitive suits looked like they might work for us no-boobers. I ordered a competition suit from swim outlet.com and it fit wonderfully and was also very stylish. I have several of these suits and just love them. Most of the mastectomy suits are just to “old lady” for my style, so I am happy to have a chic alternative. And yes, I do go out in public in my no-boob suite, because I believe that people need to see the face of breast cancer on the girl next door.
Thanks for the great tip on competitive swimsuits that work for non-reconstructed mastectomy gals. That’s awesome. Also awesome: this quote. “I believe that people need to see the face of breast cancer on the girl next door.” SPOT ON, Keel Starr!
gals, there’s an indie seller here http://www.etsy.com/shop/hisOpal from whom i bought a suit. my problem is sensitivity on the left side where they took my nodes. the great thing about this suit is you can wrap it any way you like and it will fit no matter what your size in any dimension. you can wrap it tightly or loosely – i do a loose wrap – but it’s great. my landsend suit is too tight and has an underwire that sticks me in the armpit.
Diane,
You hit it right on the head…. it’s not a pretty pink damn thing. It IS barbaric and it’s difficult enough to deal with the aftermath without having to fight at every turn. I applaud Jodi and since you know her….. you can let her know…..
Hugs to you…
Thanks for chiming in, AnneMarie! Will definitely pass along your congrats/kind words to Jodi.
I also read this story yesterday. I would like to meet Jodi, or at least talk to her. I too have problems with pain and have serious issues with clothing. I have such weird pain, I can’t wear clothing without the aid of heavy medications and Lidocaine cream. I have searched extensively for anyone with an experience like mine, and this is the first one I have ever heard of.
I had the same problem with bathing suits. I can’t wear tank tops at all or even a bra. For a swim suit top I use a men;s small or boys extra large “rash guard” t-shirt. It has the water qualities of a bathing suit without the “how can I fill this up and look natural while swimming” awkwardness. I does tend to billow a bit in the hot tub, though, so I usually tuck it in for that. Women’s clothing is just not made for comfort, while men’s actually is. I buy a lot of my clothing in the men’s department now.
After cancer, a lot of us have to make changes we never would have dreamed of beforehand. There is just no way to know how things will turn out. And how others will adapt to the changes.
Thank you for writing this story. If there is any way you could get me in touch with Jodi, I would really appreciate it.
Dianne Duffy
Will pass along your note to Jodi, Dianne. And so sorry to hear about your chest wall pain. I have some pain – mainly from adhesions – but I still strap on my fake boobs every day. For me, “passing” has been crucial to my emotional health. Although as I mentioned above, I sometimes fantasize about going without the fake boobs and the binding bra. As you said, we all make changes we never would have dreamt of pre-surgery. And our feelings/responses to cancer and its treatment continually evolve.
Thank you for writing about my lovely friend Jodi and sharing your story. We all need to be heard! I have one boob, and multiple tumors in my spine & ribs, so wearing anything confining is difficult. Wish I could go topless at times, but happy at least the Olympus spa lets me be me. Best in health to you. Happy to have found your writing.
I read your story and am so happy to hear the news that Jodi and all those who want can swim regardless of how they look! Thank you for bringing attention to something so important to us all.
I am another flat woman. Please thank Jodi for being so brave, for speaking out against a stupid rule on all our behalf. She is my hero right now. I really appreciate it and I came across the story on the one year anniversary of my own surgery. I wish I could put the words to how it really makes me feel.
There is something so incredibly profound about Jodi’s story, and the way that it points up the astonishing contradictions and hypocrisies in our culture around our breasts. In the same week, we learn about Jodi, about how she was told initially to cover up something that’s not even there anymore. And then we hear about ‘breastaurants,’ where waitresses are encouraged to flaunt their barely covered-up, frequently augmented, C-cup cleavage to drag in customers. And then there was the recent announcement of National BRA Day, which stands for National Breast Reconstruction Awareness Day, conceived by the American Society of Plastic Surgeons, [http://accidentalamazon.com/blog/2012/06/12/breast-recon-update-lipotransfer-opportunism-bra-day/] to get all cutesy about and cash in on what are still by and large the mostly barbaric recon options for women with breast cancer. Yeah, thanks for that acronym, dudes. What a confused, idiotic culture we live in. How any of us humans of the female persuasion manage to keep our sanity and self-respect is a miracle.
I have been researching the fat grafting option for those of us who’ve had partial masts. Talked to a great, conscientious, smart plastic surgeon about it. Still needs a lot of research for use with those of us who had partials, because of the possible risks associated with it for recurrence and abnormal mamms. Not to many clinical trials yet here with women who’ve had lumpectomies and partial masts, but they’re coming.
I LOVE this story. Jodi sounds like an incredible woman. It’s hard enough to face the true ugliness of breast cancer and “barbaric” surgeries, as you so aptly put it, but to show the public the reality that is breast cancer instead of the pink hoopla is downright brave and a definite political statement. I had a double mastectomy but with reconstruction. Reconstruction is a personal option; for me, I had been through so much with a number of breast-deforming lumpectomies, that I didn’t want to wake up from the final surgery without breasts. We all have our worn paths to travel, and I was very glad to read about Jodi’s path.
I understand Jodi’s desire to go topless in the pool for comfort reasons. All swimming suits are uncomfortable since I had my double mastectomy without reconstruction a year and a half ago. I have a pool in my back yard with a 6 ft. fence, but I still wear a tighter fitting, soft T-shirt with the arms cut out and a “V” cut in the front. It may not be the most fashionable, but it is comfortable. I don’t want to freak out any of the curious children with my flat chest and scars.
Thanks for writing, Lori, and I’m glad you’ve found a way to be comfortable when you swim. I’ve never been out of the house without a set of sandbags since my double mastectomy in April of last year, but lately I’ve been thinking of kicking those fake puppies to the curb, at least now and then (like when I box). After more than a year of wearing pocketed bras full of “gummi boobs” of one sort or another, my chest has started to complain. The bras do rub and chafe and I have some chest pain, although not as much as Jodi, who has full-blown chest wall neuropathy. So far, I haven’t been able to do it, though. I’m very hesitant to go out without that hourglass silhouette. I think it’s all about our own personal comfort level and I guess I’m not quite there yet.
I do think that going out and about without our fake boobs (and maybe occasionally without tops) would do a lot more for BC awareness than wearing pink boas and slogany T-shirts, though. People (and, yes, maybe even kids) should know what women with BC look like, particularly since it hits so many of us. I also think it would be helpful for others to know what we’re expected to live with post-surgery. Perhaps surgeons would do a better job if their “handiwork” was put on display more often. Disclaimer: I think my BC surgeon did a great job with my nipple/skin sparing surgery but I think we’ve all seen pics of women who look like they’ve been sewed up by a first-grader. Not acceptable.
I am learning to go it flat. I sometimes look manly, sometimes womanly. I love the whole deal. I got my life out of this experience and I want to live it. I don’t want to wear forms, nope. And I agree. I am a poster child for breast cancer awareness and that is perfectly acceptable to me. I am not hiding this bod in the locker room, on the streets, from other women, from the world. This body, scars and all is beautiful. If you see me on the street, make yourself known. I want to see you, I want to high five. I want to know there are other women who are half/flat, that I am not the ‘only one’. I know I am not, but I will jump for joy the first time I see another Half/Flatty!
Thanks so much for the awesome comment, Melanie. And huge congrats on your courage and strength and ass-kicking attitude re going it “flat”. I’m totally going to look for you on the street! ; )
You asked about discrimination after mastectomy. I had chemo, then bilateral mastectomy this year, as treatment for my second breast cancer diagnosis. I was told during chemo that my job would be waiting for me when I felt up to it. After recovering from surgery, I was told I wasn’t needed any more, at my job of seventeen years. The inconvenience for my boss, having me gone for treatment, was just too much for him, I guess. His business is too small to be covered by the ADA. So I lost my waist length hair, my breasts and my job. Fortunately, I have a loving, supportive spouse (who has a job). I’m focusing on the ease of caring for short hair, and realizing the comfort of not wearing prostheses. And realizing the advantages of not ever having to see my former boss again! We will deal with the financial difficulties.
Hey Sandra:
Thanks so much for the note and I’m so sorry about the breast cancer, the chemo and the lousy boss who who confused chemotherapy and a double mastectomy with, I don’t know, a bad case of the flu.
Yes, it takes time to recover from treatment and surgery. Quite frankly, though, it sounds like you’re better off without that dolt. Really happy to hear that you’ve got a good support system and that you’re focusing on some of the surprises that can come with cancer. I got into my short hair, too (had always worn it long) and was *really* excited when it came back curly (I’d always had stick straight hair before). Hope you continue to do well and continue to move forward. All the best from your BC sister.