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Tuesday, May 27, 2008

Two Days, One Night -- La Leche League Leaders Retreat

Three years ago, when I was first diagnosed, I had to decide whether to have a lumpectomy, a mastectomy or a double mastectomy. Given the cancer and my medical background, a purely clinical recommendation would be to have a double mastectomy and get rid of all future risk (little did they know...).

But, since the decision was not a purely scientific one, and emotions were also a factor, I was told that I needed to figure out how important my breasts were to me.

Up until that moment, I was.... um.... well.... rather attached to my breasts.

In addition to everything else that women with breast cancer experience, I was a La Leche League (LLL) leader. I talked about breasts and breastfeeding ALL the time.

So, half a year later, after I had lost my breast (reconstruction notwithstanding), and could no longer lactate on that side, I was faced with a decision: Did I want to continue my work as a LLL leader?

For a few weeks, I deliberated. How would I feel talking to mothers about breastfeeding? How could I offer support after facing such a devastating loss? Maybe my time would be better spent volunteering somewhere else? Maybe I should volunteer with an organization that helps breast cancer survivors? Maybe it was time to "retire," or at least take a "leave of absence" from LLL.

But, the more I thought about leaving LLL, the sadder I felt.

First of all, I firmly believe that everyone should do their part to make the world a better place. I am not one of those supermoms who can make supper for mothers who just had a baby or who are sick and need help. (God knows, I can barely get dinner ready for my own family!) But I can help mothers who want to nurse.

Moreover, I LOVE being part of LLL in Israel. Though leaders come from all over the political and religious spectrum, we all share many of the same fundamental values of mothering. With other leaders, I can freely discuss how long I nursed my children, or at what age they stopped crawling into my bed at night to cuddle (you don't want to know).

I love being in a room full of women who all believe in "family first," whose children are a pleasure (not a nuisance), who believe that a mother should be "responsive" and "attentive" (and that does not mean our children are "manipulating" us), who believe that children need their mothers (and that need is a real need, that does not go away as the child grows). The environment is nurturing and warm and caring and loving. And, though we don't always agree, we communicate with respect and consideration.

I am not a perfect parent. I often fail to live up to the standards of a LLL leader. (I don't post those stories). But, when I close my eyes, and imagine the family that I want, the picture would definitely fit into any LLL album.

So, I chose to stay. I still take phone calls. I still meet with mothers. I still run groups (though our group in Homat Shmuel is currently dormant). I still sit on the Israel Area Council. I do less than I did "before." Nevertheless, I am still an active leader.


I just spent two wonderful days (and one night) at our annual LLL leaders' retreat.

We had workshops about communication, and sessions about leaders' responsibilities, and a fascinating lecture about immunology and mother's milk (We learned all about the development of a baby's immune system, and that giving a baby "just one bottle of formula" has a significant impact).

I led the getting-to-know-you games at the start of the conference. It was a lot of fun and I received a lot of positive feedback.

I also ran the evening activity, which was nice, but not nearly as successful. I am not discouraged. I already have ideas about how to make it better next year.

I learned a lot, laughed a lot, and received lots of love.

How could I give this up?

Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,


mrg & grm said...

You know, not having a particular body part doesn't mean you don't remember what it's like. It doesn't mean you can't help, encourage, support, advise, etc. It doesn't mean you've lost any knowledge or skills and it doesn't mean you can't continue to lead and coach people. I'm thrilled you've continued with this and if/when you're ready to move on, it'll be because you're ready for that, and not b/c of some external and,IMO, unrelated, reason.

RivkA with a capital A said...

"...not having a particular body part...doesn't mean you can't help, encourage, support, advise, etc... it doesn't mean you can't continue to lead and coach..."

Intellectually, this might seem simple and straightforward. Emotionally, this was extremely difficult for me. The turbulence in my soul came from within me.

I was dealing with my own issues of loss. I did not know if I had room in my heart for helping others celebrate what I did not have.

I needed to figure out how I felt about continuing to be so immersed in the world of healthy babies and breasts. It was not at all obvious that talking about breasts and breastfeeding would not make me feel depressed.

It took me a while to realize that helping mothers breastfeed their babies still fills me with great joy. I am thrilled to be a part of that magical relationship.

To this day, there is no sight more inspiring than seeing a healthy, nursing baby.

RivkA with a capital A said...

One more important thought:

Had I felt differently, I would be totally ok with that.

It is legitimate to move on because of that "external" reason.

For me, breast cancer and breastfeeding are absolutely related.

Btw, medically they are related as well: the longer you breastfeed, the lower your risk of breast cancer.

(not that that helped me!)


Unknown said...

I wasn't aware of this dilema back then, and I'm so happy you chose to stay with us in LLL Israel.
Love and a big big hug, Liat.

Anonymous said...

I would love to hear updates - remember that talk we had in my kitchen on chol hamoed? -Jameela

mrg & grm said...

"I was dealing with my own issues of loss. I did not know if I had room in my heart for helping others celebrate what I did not have.
I needed to figure out how I felt about continuing to be so immersed in the world of healthy babies and breasts."
Well that all makes perfect sense to me. I didn't read it that way. I read your post as almost implying that you didn't have right to be there b/c you didn't have the parts. And that's something that really bothers me.
People tell me I don't have parents and no, that's not true. I just don't have _living_ parents.
And while I might not have certain body parts, well, that definitely makes me feel apart from other women when they discuss certain experiences, and it bothers me, but at the same time, everyone (or almost everyone) has had experiences that leave them feeling out of it relative to other pple.
In any event, I hope it was very clear that you are totally and absolutely free to do what makes you happy and I wish you nothing but happiness.

SpoiledMom said...

Hello, wanted to return the visit. I went through some of the same feelings with my first round of cancer, 10 years ago. I didn't feel like a woman b/c I didn't have a uterus, ovaries, my cervix.... I couldn't have babies anymore. I felt useless and went into depression. Thankfully, I came out of that and realized that I am the same person that I was "before". I am a Mother, and I always will be, for I already had two beautiful daughters.

Your cancer sounds almost the same as mine, except I started with cervical cancer 10 years ago,stage 2a invasive, then had it metastasize to the bone in my hip, which was found almost six months ago. I am undergoing radiation and on tamoxifen. I recently found out I have a tumor on my bladder and in my lung.

Thank you for finding me so that I could find you.. :)


RivkA with a capital A said...

"I read your post as almost implying that you didn't have right to be there..."

I NEVER felt that I did not belong in LLL, for any reason.

Quite the opposite, I have always felt embraced and surrounded with love.

It was 100% clear to me, from the beginning, that whatever path I chose, would be totally accepted and supported.

I am really very lucky and very blessed.


Liat -- me 2. LLLots of LLLove!

Jameela -- I do remember (which is unusual for me). Do we need to follow up on that conversation?

Chrissy/Spoiled Mom -- I am so glad to that you wrote! We really do seem to be sharing similar experiences and time frames. I was diagnosed only a few months before you. And I also have significant metastasis in my left hip.

My first bout with cancer, though difficult, was much more emotionally manageable. Both my mother and my grandmother survived breast cancer. I did not relate to breast cancer as something life-threatening.

This time around, I am having a much harder time. Though I have never sunk into depression, thank God, I do find it challenging to be in the gray zone, living with metastasis, where we are not really sick but we are not really healthy either.

I am curious how others deal with this, both publicly and privately.

btw, my email is

what is yours?