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A Community for Comfort and Care
When I heard Julia Louis-Dreyfus talking about her breast cancer diagnosis on Armchair Expert, I couldn’t have imagined it would save my life. It was April of 2021 and we were still in the deep isolation of Covid Days. My husband and I were taking turns sharing podcasts on our 22-hour drive from Seattle to Palm Springs. Our three kids–then 14, 12, and 8–were in the back of the car, each in their own world of movies or music.
We had survived the great darkness of the Pacific Northwest winter while homeschooling our kids and working remotely at our jobs. By April, we were bone tired and desperate for sunshine. So we squeezed three kids, two dogs, and a month’s worth of clothes into our SUV and spent 3 days driving to a little house we had rented in Cathedral City.
I shared Armchair Expert with my husband because I’ve enjoyed so many of Dax’s interviews while running. I knew that the JLD episode would be a good one for us because we both grew up on Seinfeld and are huge fans of Veep.
Dax has a way of disarming his guests by being vulnerable about his own mistakes and insecurities. As a result, his guests usually feel safe enough to talk about anything and everything. JLD starts out a bit more reserved in the interview, but eventually she talks about deeply personal experiences, as everyone does on this show. Before she answers Dax’s question about boys she dated in high school, she jokingly asks, “Do I have to pay you for this session?”
As the interview progresses, JLD continues to let down her guard. She opens up about growing up with two dads, the difficulty of her father’s passing, and the perspective shift provided by her breast cancer diagnosis.
JLD describes getting out of the shower one day and noticing a subtle indentation on her breast that she hadn’t noticed there before. She consulted her husband who suggested that maybe she had “slept on it funny.”
The night before she got the life-changing call from her doctor confirming the diagnosis of breast cancer, JLD was on stage accepting her sixth Emmy for her portrayal of Selena Meyer on Veep. She went to bed with a trophy and woke up to a cancer diagnosis–an absurdity that wasn’t lost on the comedian.
Before we left for California, I had just turned 46 and had made an appointment for my first ever mammogram. My doctor had assured me that, unless you have a family history of breast cancer, the difference in risk between starting mammograms and colonoscopies at 45 or 50 was minimal. I elected to skip the routine colonoscopy that year, but I signed up for the mammogram, mostly just to feel like I was on the right side of responsible.
We had a wonderful month as a family in the desert. We continued homeschooling and working, but the open air and continuous sunshine made it feel less daunting. By the time we made the trip home in May, we felt refreshed and eager for spring.
One day just after we returned, there was sunlight streaming into our bathroom window as I got out of the shower. I noticed a very subtle divot on the outer part of my left breast. At first, I thought the sun was just casting a weird shadow. But thinking of JLD, I investigated it further. I felt some thickening underneath. Not a lump exactly. Like JLD, I called in my husband to inspect it. We talked nervously about the podcast we had heard a few weeks ago.
I called my primary care doctor. I wanted to know whether I should tell the radiologist about this divot or if I should just wait and see what they find in the mammogram. I was a bit surprised when she asked me to come in right away. Within an hour of finding this thing, I was lying on her table. While she was still in the room with me, she changed her order from a routine mammogram to a diagnostic 3D mammogram + ultrasound. I thought about JLD’s effortless confidence and wished I had a good quip for this moment.
I ran every day after that, all spring and all summer, often thinking about JLD. I re-listened to the podcast episode in case there was any more information or comfort to be gleaned from it. JLD was alive and well. She had learned quickly what was important to her. She was living her best life.
Due to a series of mishandlings that I won’t get into now, it took two agonizing months from the time I noticed the divot to the time I received my diagnosis. During that time, I went running every day, sometimes multiple times, just to manage the stress of waiting. By the time I started treatment, I was strong and well conditioned for handling the alternating cycles of surgery, chemo, radiation, hormone therapy, and more surgery.
A study published recently in JAMA Network showed cancers are on the rise for younger Americans under 50, particularly among women. Once thought to be a disease of post-menopausal women, breast cancer is now the most common cancer in the world and the leading cause of cancer mortality worldwide. In the United States, there are 4 million people living with breast cancer today and 300,000 more are diagnosed every year. Nearly a quarter of those cases are in people under 50 years old.
The good news is that treatment has come a long way and our survival rates are very promising, especially when the cancer is caught early. Athletes have an added advantage. We have less fatigue, nausea, and depression and our rates of recurrence are much lower because of our conditioning. Add that to the long list of reasons why we should continue indulging in our favorite sports as often and as long as we can.
Looking back on it now, I know I wouldn’t have thought twice about that divot if I hadn’t heard JLD talking about hers first. I didn’t know anything about divots or dimples or rashes or any of the unusual signs that could be symptoms of breast cancer. Plus, I’m young (for cancer). I’m healthy. I eat well. I’m a runner. I breastfed all three of my babies. I have no family history. Like JLD, I wasn’t at all prepared for this. Also like JLD, the important things in my life rose quickly to the surface. My deep connections to my family, my dearest friends, and my own body have become paramount.
Thanks to JLD, I’m still here. I’m trying to turn this experience into something more than basic survival. If I could learn something so critical as “get that divot checked out right away” from a single line of a podcast, what could sharing my own experiences offer someone else?
This is my first post writing about my experiences as a runner living with breast cancer. I couldn’t find enough of those kinds of stories or guidance when I was in treatment, so I’m hoping to provide that now to other runners living with any stage of any cancer.
But talking about my feelings in a public forum requires overcoming some deeply ingrained Gen X values about sucking things up and keeping our internal lives internal. While trying to summon Dax’s courage to be vulnerable, I am reminded of another moment in his chat with JLD. They bonded over the deep embarrassment they’ve both felt after taking a big swing in a scene and getting a note from the director to “make it smaller.”
As Dax explains, “…going too small is not embarrassing. Like hearing like, ‘oh you could go bigger with that’ for some reason, that’s not embarrassing. But the fact that you’ve gone too big….”
JLD gasps, “…when you said that, it makes me kind of die on the inside!” she cringes. “It is, it’s humiliating. Because you’ve risked everything and you’ve made a fool of yourself. And you’ve risked it all with good intentions, which is more humiliating.”
The subtext here (I hope) is that, despite the occasional blow to one’s ego, those humiliating big swings are risks worth taking. Because inherent in the exposure of a big, earnest swing is the possibility of transcending the banal and letting something more important rise to the surface.
I’m taking that first big swing today. If you want me to make it smaller, please spare me the humiliation and keep the note to yourself.
I thought this would be the best place to tell the story of my mom, who is the reason I founded Chemo Kitchen, and what we’ve learned over the past several years.
Like so many others who are victimized by the surprise attack of cancer, Mom took it head on. It was a fairly early diagnosis on a treatable form of breast cancer, but sometimes one doesn’t hear anything after the words “you have cancer.” Her oncologist briefed her on the side effects of her chemo, which they’d pursue aggressively. She was going to lose her hair, she was going to feel drained. She was going to feel sick and some days the fight was going to be a lot harder than others. Recovery would be a long one. As she mentally prepared for all that, what she didn’t expect was taste change.
Mom has a sweet tooth with a relentless appetite for chocolate ice cream. At the end of the day, well, most days, frankly, she likes a baby Dove Bar. During her treatment, in addition to all the other known problems, she said her ice cream started to taste bitter, and the texture was like sand.
Incredibly demoralizing. She felt cancer ran a successful trick play on her.
As you will see in other parts of the Chemo Kitchen site, it was the community that gave her energy. My buddy ET started the cookbook journey with me. Shortly thereafter, his friends, other James Beard recognized chefs themselves, came out of the woodwork. I cannot tell you how many times I’d be talking to a chef about Mom’s journey, and they’d say, “You can stop there. I cooked for my mom/brother/friend/self because the same thing happens to a huge percentage of people. I’m in.”
We learned about community. The cookbook never would have happened without the wave of community that backed it. Whether it was Kickstarter, the hundreds of volunteers, different agencies, hospitals, organizations… Community support is the most important chemical aspect of survival. Not just during cancer. During life in general. Sometimes it takes a community to swing a pendulum. But there is little a community cannot do.
As a thank you to all who participated, we created this platform to share a story. To rant. To ask for help. To provide tips. To be heard.
Please help Mom (11 years and counting!), Bob and I and the rest of Chemo Kitchen build this space for the people who need it, wherever they are in their comfort and care journey. Together, it’s amazing what we can accomplish.
I look forward to reading stories from patients and providers alike. I look forward to learning. And I look forward to helping, in any way we can.
Please join our community.
Thanks for adding this community page. I’m a survivor of follicular lymphoma and large diffuse B cell lymphoma. I’ve been through 7 different courses of treatment over 20 years of survivorship. I was diagnosed February 12, 2004. I had an autologous stem cell transplant in August of 2018 and Car-T cell therapy in December of 2022. I’m currently in a full remission. It’s taken a true toll, and it’s been a very difficult road. I’ve gotten thru it thus far with the love and support of family and friends and amazing doctors, nurses, researchers and pharma. What’s your story. I’ll be sharing more on this platform soon. I’d love to hear from you.
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