Saturday, August 21, 2010

The Power of Support

Saturday was the summer meeting for the FORCE Outreach Group in Los Angeles. This meeting reminded me how important it is for us to get together. There is a power in meeting in person with other women who are facing or have faced the same challenges. And because many of us who are BRCA positive don't know many others in our "regular" lives who share the same high risk for breast and ovarian cancer, these meetings are often the only place we feel truly comfortable talking about our challenges, fears, and plans.

I remember the first FORCE meeting I attended three and a half years ago. I had been lurking on the online FORCE message boards but had not posted much. I was hesitant to go to a meeting where I would not know anyone. But a woman I had met was going and convinced me to go also. The meeting was in a restaurant and was primarily social; we had drinks, dinner and introduced ourselves. After dinner a group of women stationed themselves in the ladies room for "show and tell." Women who had already had mastectomies and breast reconstruction showed their reconstructed breasts to women who were considering taking this bold and proactive step. That meeting was the first time I saw breasts that had been reconstructed with transplanted tissue, including both DIEP and GAP reconstruction. At the time of this meeting I had already had mastectomies and had started my implant reconstruction. I wished that I had found FORCE and attended a meeting before I had my mastectomies. I might still have made the same choice, but I would have been far better informed and I would have met women who had made different decisions. I am a firm believer in doing all of your homework and there is no place better than a FORCE meeting for doing a little in person homework.

Our LA Outreach meetings have changed over the past three years. We no longer meet in restaurants. We meet in homes or in other meeting spaces, which makes conversation easier and the meetings are more intimate. We do have speakers from time to time but most often we are resources for each other. Today's meeting was at The Wellness Community of West Los Angeles, which has a wonderful large meeting space. One of the things I particularly like about our meetings is that there are a group of women who have been coming to our meetings for years and I enjoy seeing them and keeping up with what is happening in their lives. We also always have women who are new the BRCA and high risk world and it is wonderful to see how women connect with others who can answer their questions or who are in similar situations. And of course the show and tell is a consistent element of all meetings. Today, as with many of our meetings, women were pleasantly surprised by this element of the meeting. Many women remember their mother's and/or grandmother's mastectomies from years ago, when such procedures were truly disfiguring. But with newer techniques, including skin sparing and nipple sparing mastectomies, today's mastectomies are not your mother's mastectomy. Many of the results are truly beautiful. Women today spoke of their reconstruction, especially if they used tissue from other parts of their bodies, as allowing them the "mommy makeover" that they wanted after multiple pregnancies and breastfeeding. This, along with their substantially reduced breast cancer risk made them happy with their decision to undergo preventive mastectomies.

And yet other women, sometimes even after a breast cancer diagnosis, have decided to continue to pursue a program of surveillance. We discussed surveillance options, their weaknesses and strengths. It is good for women to have the opportunity to talk about their surveillance and how the stress of surveillance is affecting their lives. It is good for young women to be able to talk about their hope to breastfeed their future babies before they need to consider surgical prevention. These young women are at a time in their lives when their friends are concerned with getting married and having babies, not with mammograms or MRIs. Meetings allow these women to connect with other women sharing the same high-risk concerns help them to feel less isolated.

But this meeting was somewhat muted for some of us because one of our group is suffering from multiple complications from breast reconstruction surgery. Our dear friend Teri, whose blog is Teri's Blip in the Universe, has blogged about her battle with blood clots that developed after her second breast reconstruction surgery. We all undergo these preventive surgery with the hope that we are taking proactive steps to prevent cancer and protect our lives. We all know that surgery comes with risks but we also know that those risks are low and we hope that complications will not happen to us. Teri's story, which she is graciously sharing with the world shows that even with preparation, excellent doctors, and good follow-up care, complications can happen. As a high-risk family we are all praying for Teri's speedy and full recovery. And we were thinking of her at our meeting today.

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  1. Oh, Joi - on the one hand, it feels so good to know that I've touched that many people, but on the other hand, I hope I didn't put too much of a damper on your meeting. I had wanted to go to that meeting so badly! I haven't been for far too long. Maybe an impromptu meeting can be tossed together in a few weeks, when I'm allowed to travel again...

    You're right, about the complications.. Sometimes we can do everything right, and problems happen anyway. I'm still trying to work out in my head how I feel about that.. Sue sent me a text message while I was still in the hospital - she received a card from a friend, while she was in chemotherapy. The card said: "The path will remain while you stop to remove the stone from your shoe." It hit me at the right time. I'd been asking myself how I could continue to help people like I had been, having all these complications... even after doing everything right, both times, and one of the complications could have been deadly. I didn't know if I'd be able to encourage people with the same passion I'd done before - I sort of lost myself a bit.. then Sue sent that message to me and it made me realize that how I was feeling was okay. And that it'd be okay for me to stop to take care of myself, get my own health back, before walking the path again. I've had some real highs & lows - I felt sure I would die - but I was wrong - I've never been so happy to be wrong before..

    Well, I'm definitely rambling - this probably would have been better left on my own blog, sorry about that!

    Thanks for all the care, and for being such a good friend to me. Thanks for the fruit basket and cheesecake. Thanks for being you..

    As soon as I get the OK to drive, I do think I'm going to drive down to visit - it's been too long now.

    Thanks again...for everything.. and sorry again, about the ramble..

    Teri Smieja

  2. Teri,

    No problem, ramble away. We are just happy to hear from you!

    We are certainly glad that you are taking care of yourself and that the clots are shrinking and you are getting better. If you can drive by September 19th we would love to have you walk with us on the Kickin' Cancer team. You can spend the night before at my house if you want so you won't need to get up in the wee hours to get here at the start.

    And yes, it is totally OK for you to focus on you for a while. You can return to being a cheerleader for others if and when the time is right. In the meantime, just do what you need to do and know that you have lots of moral support from us.

    And yes, we will do an impromptu meeting as soon as you feel up to it.

    Rest and continue to heal,