My name is Beth Caldwell. I’m a writer, an activist, a former federal civil rights attorney, a lifelong Seattleite, a wife and mom to two fabulous children…and I have metastatic breast cancer. I found the lump in my breast in the shower on a Tuesday in March 2014, when I was 37. I saw my doctor that Thursday, I had a mammogram and biopsy the following Monday, and was diagnosed with ER/PR+, HER2- neuroendocrine breast cancer on a Wednesday. A week later, I got the results of my PET scan, which showed that my cancer had spread to my bones, making it metastatic and thus incurable. I learned then that I will die of or with my disease.
Since then, my cancer has also spread to my liver, brain and lungs. Right now, the treatment I’m on has managed to beat the cancer back so that it no longer shows up on PET scans–but that doesn’t mean I’m cured. My treatment will continue for the rest of my life, however long that is. Median survival with de novo metastatic breast cancer, like mine, is about 33 months. I’m hoping that I’ll beat that time frame, and live long enough to see my youngest, who is 4, start kindergarten in 2017, or even beyond that.
What’s it like living with metastatic breast cancer? Well, for one thing, I’m tired all the time. For those of you with kids, remember the days when they were tiny and woke you up every 2 hours all night, and then you had to try to function when you haven’t slept well in weeks or months? That’s a bit what cancer fatigue is like, only more so. I struggle to get up in the mornings, and coffee is my constant companion…and there are days where I just stay in bed, because I’m too tired to get up.
Then there’s the other side effects from treatment, which change depending on the treatment you’re on: diarrhea, constipation, nausea, hair loss, vaginal dryness, loss of libido, skin darkening, peeling skin on hands and feet, joint pain…and the knowledge that this will all continue until I die.
A diagnosis like mine is devastating, but it’s not the end of the story. It’s only the beginning. It’s a story of grief, anger, and frustration, but also of love and support. I’ve written before that finding out you have metastatic breast cancer is like being shoved off a cliff. You land at the bottom, in pain and afraid, but after a time, you pick yourself up and survey your surroundings. And what I’ve found is that here at the base of the cliff, the trees are actually quite lovely–and those trees are the people I have met: my incredible oncologist, Dr. Edmond Marzbani of Seattle Cancer Care Alliance, and my fellow metastatic patients.
Those metastatic patients are what drive me to advocate for better funding for metastatic research. I look at those women and men, and I think to myself, “I don’t want them to die.” But they do die–in December alone, I lost 8 friends to metastatic breast cancer, many of them leaving behind small children who will grow up without a mother because of this cruel disease.
It’s a lot like living through the AIDS crisis in the 1980’s: you watch young people, with so much life ahead of them, with such beautiful souls, just gone. It makes me want to scream out, “WHO WILL HELP US?” And I’ve realized as I’ve been advocating for our community that it has to begin with us. We have to try to save each other. We have to turn our grief and our love for each other into action, to change the landscape for metastatic breast cancer. So that no more families have to bury a loved one so young.
For me, the hardest part about this disease is watching what it does to the people who love me. I can take the horrible side effects of treatment standing on my head, but I know how my family and friends feel watching me suffer, because I feel the same watching my metastatic sisters and brothers suffer. I know what it’s like to want someone to be OK, and to be unable to help, because metastatic breast cancer doesn’t care that I want them to be OK. So, I know that my family and friends feel the same way about me–and that’s what makes me cry. The idea of the people I love, who love me, suffering along with me, is almost more than I can bear.
But I am bearing it, because metastatic breast cancer just doesn’t give you a choice. You live with it until you die of it. I get tired of people saying how brave I am, because I think they think it means that I’m fearless. But then I remember that Brave means you’re scared, but you do it anyway. And that’s what living with a terminal illness is like–fear is a constant companion, but nevertheless, you go on living your life as long as you can, as well as you can.