Three cancers at once
"You have cancer in your colon," my doctor said. It was 2014, I was settling into my new life in San Diego after moving from New York City. I'd been scared to hear those words my entire life because my family has a genetic disorder called Lynch Syndrome that puts us at very high risk for colon cancer as well as ten other cancers. They did a PET scan to check the rest of my body and found large masses in my ovaries. I underwent surgery in March, 2014 where they confirmed three unrelated cancers - ovarian, colon and endometrial. Along with the melanoma I had in 2011, that's a total of four unrelated cancers by the age of 42. I ended up losing four organs: ovaries, uterus, appendix and most of my colon. I had 18 weeks of chemotherapy (18 taxol, 7 carboplatin).
Adjusting to post-chemo life
As soon as I completed chemo in the fall of 2014, I start consulting again, anxious to resume my work as a writer, cooking teacher and nutrition educator. Unfortunately, my body started breaking down by the spring of 2015. I was so weak, I could barely get out of bed. I had a bowel obstruction and was hospitalized in June, 2015. I started eating a modified diet of mostly mashed food and liquids. I discovered I was chronically dehydrated around this time and started getting weekly IV infusions.
Barely could get out of bed
By the winter of 2016, I was a mess. I managed to crawl out of bed to go to work and the grocery store but would stumble back in as soon as I got home. The decision to move back to my hometown of Seattle and live with my parents was not an easy one. I'm extremely independent and love my work. After two years of me stubbornly refusing to give up my place, my parents finally got their wish.
I thought I'd get better after moving home in May of 2016. Unfortunately, my body kept deteriorating from the huge medical hits. My digestive tract which was never great to start with - I used to have Ulcerative Colitis when I was young - got worse and worse in the fall, 2016 until my diet shrank to what I eat now: chicken broth, runny eggs, avocados, coconut yogurt, protein smoothies, lots of coconut bliss for calories and small amounts of fish when I can. I have horrible abdominal and back pain if I don't carefully follow this diet. Sometimes I get pain even when I DO follow it! I also developed a daily "tummy routine" (I also call it "pooping" routine - I promised you honesty!) to avoid pain and ensure I have bowel movements - it involves walking while drinking warm water, doing specific yoga stretches, using a knobby roller - and taking Epsom salt baths on really tough nights. It takes hours each day to stimulate my intestines to do their job!
Now I have an invisible disability
People wonder why I *look* so healthy when so much is wrong with me. I'll delve into this in more detail later but the short answer is this: I've ALWAYS had to work 10 times harder than the average person to have half as good of health. As a result of my bummer immune system and crappy digestive tract, I've spent 25 years learning how to adapt quickly when faced with a medical challenge. I can quickly pivot and change my diet, avoid white sugar, give up booze - whatever it takes. Between my master's degree in nutrition from a Bastyr University (a naturopathic school), my culinary nutrition background, and years of conducting self-experiments, I've gotten savvy at identifying what's wrong and finding solutions to fix it.
But it is exhausting to be playing a constant game of whack-a-mole with my health for five years straight. As soon as something starts breaking down, I have to fix it before the next one pops up. I worry all the time that I'm not getting enough of the right nutrients to prevent more cancer. The pain, the same boring diet, the tummy routine, all take their toll on me psychologically. I see a therapist to do EMDR to cope with this and the medical trauma. I also work hard every day to find joyful moments, whether it's belting out a song (I have a terrible voice so this is always in private!) while driving home from the hospital, taking walks outside when my stomach is behaving, laughing with an old friend, or cuddling with one of my eight nieces and nephews, I cherish each and every *good* moment I have.
The biggest gift from this medical mess is I finally know how to live in the present and squeeze every bit of joy out of every single good moment I have.
Who know what's next
I used to be a hyper-active kids cooking teacher and nutrition educator that worked long hours in New York City. I've published a cookbook, spoken at conferences around the country, traveled abroad as much as I could afford, and loved dancing until the wee hours of the morning. I was even on Sesame Street and the Today Show! (You can read more about my culinary career and credentials on my old website.)
It's challenging to give up my culinary career which I loved. I miss working. So when I feel up for it, I've been advocating for the Affordable Care Act which helped save my life in 2014. I recently had the honor of speaking at a press conference with my state senators. I know firsthand how difficult it is to navigate our medical system and will continue to work hard to protect and improve the ACA so that everyone gets the care they need.
I'm doing my best to make peace with this slow transition from able-bodied person to a disabled person. I have no idea where my life is headed - or how long I have left. But I do know this: I'm surrounded by an incredibly supportive network and an extraordinary online community. I value YOU, my online peeps, more than I will ever be able to convey. You've been a lifeline for me in so many ways. As always, thanks for listening. It means the world to me.
Much love, Jules