The Long-Term Merry-Go-Round: 13 Years With Metastatic Breast Cancer

Jill Cohen, on living with stage IV breast cancer for 13 years. Learn more about metastatic breast cancer and support the Beyond the Breast Campaign.

In August I celebrated 13 years of living with metastatic breast cancer. Yes, I celebrated – wouldn’t you? I called it my ”cancer bat mitzvah.” Many friends brought chocolate, sang, and danced with us. We even shared words of Torah, from the Jewish Bible’s portion for that week.

10252044_10152730874224017_5685460408883384800_nHow do I begin to talk about living with advanced cancer for thirteen years? From the first day when we got the news that my femur was riddled with mets and broke that very night, to hearing my oncologist tell me the truly despairing odds in 2002. Through every hormonal blocker, multiple rounds of radiation, and fifteen different chemotherapies. From bone mets to liver mets to brain mets and skin mets. From the slow-growing cancer to the faster-growing one, it has been a long ride on the Cancer Land merry-go-round.

I call it a merry-go-round because sometimes I ride on the ponies, going up and down and holding on tight, and sometimes I sit back on the bench and try to relax.

It’s also been an emotional and spiritual journey. Although I tend to be very practical, even about the brain mets, my connection to my religion and to my community has helped me in so many ways. I go to synagogue on Saturday mornings to sing with my community. We feed one another real food (when my leg broke they fed us three times a week for a month) and recharge my soul’s “batteries.” I have learned to lead and serve this community.

I have lost many friends to cancer during all these years. I have dealt with my own mortality over and over again. I have written a medical directive, a will, and an ethical will, a Jewish tradition that goes back a thousand years. These things, especially the ethical will, have helped me understand what I hold dear, and what I would like to leave behind for my family and friends. It doesn’t make the prospect of dying from cancer any easier. It does help me express my values and then try to live up to them.

Thirteen years ago I told my cancer that it could stay as long as it liked. As long as it was quiet, I would share my body with it. I refused to be at war with my own body. I’m not a cancer warrior. I don’t even call myself a survivor.

Now I call myself an outlier. As Malcolm Gladwell wrote about in his book of that name, “if we want to understand how some people thrive, we should spend more time looking around them – at such things as their family, their birthplace, or even their birth date.”

No one can tell me why I have lived with mets for so long. There is no reason why I got cancer in the first place. I know that I only have this one life, and that I will do my best to find joy in each day. When a day, an hour, or even a minute seems too long and too filled with pain, that’s when I eat chocolate – what we call vitamin CH at home. That changes the moment from life with cancer, to simply life.

At my annual mets party this year, we sang from Fiddler On The Roof. Here are the lyrics I shared with all:

To us and our good fortune!
Be happy, be healthy, long life.

And if our good fortune never comes,

Here’s to whatever comes,

Drink l’chaim – to life!

Read Jill’s award-winning blog, Dancing with Cancer: Living with Mets, The New Normal.

8 thoughts on “The Long-Term Merry-Go-Round: 13 Years With Metastatic Breast Cancer

  1. Thank you for posting this inspiring story! I really needed to read this! I was diagnosed with stage 1, grade 3 breast cancer in December 2012 and in December 2014 it changed to metastatic breast cancer (lymph, bone, lungs). Treatments and emotions are definitely a merry go round.
    Renae

  2. Pingback: Connecting You to the Many Voices of Those Living With MBC | Living Beyond Breast Cancer's Blog

  3. Pingback: Celebrating Jill Cohen, Dancing With Cancer Blogger | MBCNbuzz

  4. Pingback: Metastatic Breast Cancer Network » Celebrating Jill Cohen, Dancing With Cancer Blogger

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