Practical advice and personal wisdom from a four-time cancer survivor.

FullSizeRender (3)

This is me before a life-saving colonoscopy last week – covered by my Obamacare. My doctors are also trying to determine why I can’t eat solid foods.

I didn’t want to write this post. I really didn’t. I’m old-school and believe voting is personal business. But I’m petrified this year. This election, my fate hangs in the balance. This time, I’m fragile, vulnerable and dependent on the government for the first time in my life. I’ve had 4 unrelated cancers by age 42 and many, many complications that prevent me from working. I have a genetic disorder called Lynch Syndrome that makes me at risk for EIGHT more cancers.

This is the hardest sentence I’ve ever had to write:

My name is Julie Negrin and I AM A DISABLED AMERICAN.

This election will directly impact my life and my HEALTH. I am terrified I will lose my health insurance. If I can’t get to specialists…well I don’t like to think about it. I’m scared I will lose my disability hearing next year. Controversial government social services are now my lifeline.

This election could literally be life or death for me.

For the past 20+ years, I didn’t work in corporate and set aside a small fortune. Instead, I dedicated my career to educating children and families how to eat healthier. Long before it was “hip,” I became a food educator and activist. According to Social Security, I’ve been paying into the system since the 1980s, when I started working in a law firm while still in high school. I worked my ass off over the years, getting a master’s degree, writing a cookbook, lobbying for kids. I’ve had so many jobs, I’ve lost count. I’ve paid my taxes diligently every single year. And now, I’m stuck in a body that doesn’t function correctly and I’m living with my folks. I work SOOOO hard to get healthy. Every. Single. Day.

Many people think people like me are looking for “hand outs” when nothing could be further from the truth. I want to work so bad. So bad. Get back to helping people. I’m that strange breed that LOVES working (just looked at my work history online!). But I can’t. I can barely get to all my doctor appointments each week.

I have 8 appointments this week alone: gastro at Swedish, GI expert at UW today and tomorrow, GI Oncologist at Fred Hutch, plus my weekly “regulars” which include two days of IV fluids, acupuncture, visceral massage and therapy. All covered by my Obamacare for a very reasonable amount each month.

I can’t survive without my Obamacare coverage.

Also, it’s safer for ALL OF US. It sucks to think about but cancer rates are rising, a LOT. These programs are in place for you and your loved ones, just in case….. If it can happen to me, it can happen to anyone. People need to understand how important it is to keep these programs in place.

This is not something I want to share publicly. I’m ashamed of having to ask the government for help – I used to be the one working in non-profit helping other people!!

I have to get over that shame. I feel it’s my obligation to speak up. To remind people that the Congress races – and Presidential races – are still tight. Your vote can make a difference for ME. And 20 millions other people on Obamacare.

Your vote could HELP me. Or HURT me.

One party is dedicated to keeping me insured. One is not.

Please just consider this before filling out your ballot. Think hard about the choices you’re making, not just for yourself but for all of us.

This post may come too late for a lot of people but perhaps it will impact a few voters – I didn’t have the balls to share until now.

I’ve dedicated my entire life to helping others get healthy. And now I’m the one who needs help.

MY LIFE IS IN YOUR HANDS.

Much love, Jules 

Please feel free to share this post.

  • Cancer Teacher
    Hi there, my name is Julie. I’m a nutritionist that’s had four cancers: melanoma, ovarian, colon, and endometrial cancer — the last 3 all at once due to a genetic disorder called Lynch Syndrome. Cancer can be horrific, painful, life-stealing. It can also be transformative, mind-opening and life-affirming. I’m working hard to get strong and find the silver lining lessons during this shit storm experience. Stay tuned to find out what I've learned, and continue to learn, from Cancer Teacher.

    Much love,

    Julie Negrin

    About Julie & Cancer Teacher

  • Retiring from Teaching Cropped

    I just found old photos of my VERY first cooking students I taught in Seattle in ’97 when I worked for WA State Dept of Health. It was so long ago, there are peanuts on the table! These kids are close to 30 years old now.

    It breaks my heart to say it out loud. 

    I know it’s weird but my work has been the love of my life for the last twenty years.

    Unfortunately, it’s time for me to admit the truth: my body can’t handle the manual labor that goes along with culinary work.

    I was also in denial when I was diagnosed with Ulcerative Colitis when I was 17 years old. I acted like other college students, drinking alcohol and eating cereal for three straight meals in a row. I lived like that for four years before I was ready to take responsibility for my health.

    Denial is part of the healing process.

    The stakes are higher this time, of course. 

    Three cancers and the impact it’s had on my body requires my full attention.

    And yet, I still managed to live in denial for two years after surgery!

    It’s hard to let go of something we love, especially when it’s a huge part of our identity.

    When people ask me what I do, I don’t say nutritionist or author, I say “cooking teacher.” It’s how I perceive myself first and foremost – and always leads to delightful conversations. 

    And now I have to let it go. 

    I’m retiring from teaching cooking. 

    There, I said it out loud.

    I’m retiring from a career I adore while living with my parents, broke, beaten down and fighting for normalcy in any area of life I can.

    I wish desperately that I could work like a normal person. But I’m at doctor appointments 4-5 days per week. Fluids take up two half days per week, visceral massage, acupuncture add up to another half day. I usually see a specialist of some sort – or this week, I am meeting with a survivorship person at the cancer center. Last week, I met with a gynecologist oncologist – between driving, waiting for an hour, the administrative crap, my appointment took a total of 3 hours. One appointment! 

    And this doesn’t include how crappy I often feel or how emotionally draining some appointments and cancer screenings are.

    I’m often so exhausted by 4pm, that I crawl into bed and stare out the window.

    Some days, I wonder what I’m fighting to get back to, where I’m headed. If I’m in a particularly dark mood, I think about the fact that I have basically no retirement, no way to support myself in upcoming years, my parents can’t keep working forever. They won’t always be around.

    What will I do then? What if more cancer comes back? I have my siblings, of course, but they have their own families to support. I could win the lottery. I could finally grow the fuck up and choose a partner already. But still, nothing is certain. 

    There are no guarantees.

    It’s hard to live with such uncertainty. 

    At a time when most of my peers are firmly locked into careers, homes, and families, I feel completely untethered.

    I don’t have anywhere to be each week except for doctor appointments that I could cancel at any time.

    My friend pointed out that I can create anything for my life now. This is huge reason I never settled down: I loved reinventing myself, starting a new career chapter, moving to a new city, discovering a new lover. 

    That’s changed now. Feeling untethered when everything else in my life is so uncertain makes me feel anxious instead of free, overwhelmed instead of buoyant, afraid instead of confident.

    I guess that’s why it was so important to me that I start this blog before I moved back to Seattle. I needed SOMETHING to focus on, something to connect me to the outside world.

    Otherwise, where do I exist? What is my purpose on this planet?

    I don’t know where I’m headed. None of us do, of course. 

    But most people’s uncertainty is a dull dinner knife pressed against their fleshy backside they can ignore most of the time.

    My uncertainty is a razor sharp fisherman’s knife digging into my jugular. 

    One wrong move, one bad diagnosis, one fatal test result and I’m gone.

    It’s a strange way to live, untethered, uncertain, unattached to normalcy. No money. No career. No partner. No kids. No home of my own.

    My community has always been important to me. 

    But now it feels like my lifeline. 

    You are my family. You are my work. You are my loves.

    That’s all I got right now, are the people in my life. 

    More and more, it’s becoming clear that it’s the only thing we need besides food, water and oxygen. 

    When all you have is love in your life, you hold onto it pretty damn tight.

    Of course, it’s only when everything else was taken away that I could see this. The longer I live without tangible adult identifiers (business owner, renter, girlfriend, employee, freelancer, professional, traveler, gypsy) the easier it is for me to see the real treasures buried underneath the labels.

    The people and the love.

    So now when someone asks me what I “do” for a living, my response will be simple:

    “I’m in school, I’m learning how to be a better human being. I may be failing a couple of subjects but I love it. I love learning what’s important. I love gaining better perspective. But most of all, I love learning how to love.”

  • Cancer Teacher
    Hi there, my name is Julie. I’m a nutritionist that’s had four cancers: melanoma, ovarian, colon, and endometrial cancer — the last 3 all at once due to a genetic disorder called Lynch Syndrome. Cancer can be horrific, painful, life-stealing. It can also be transformative, mind-opening and life-affirming. I’m working hard to get strong and find the silver lining lessons during this shit storm experience. Stay tuned to find out what I've learned, and continue to learn, from Cancer Teacher.

    Much love,

    Julie Negrin

    About Julie & Cancer Teacher

  • Everything I do to heal_medium

    This is my belly during acupuncture which I get for digestion and back pain. Dr. Wang adds electrodes to the needles for extra activation.

    I’ve watched all of the Bourne movies at least 50 times. My favorite thing about Jason Bourne is that he is never a victim. Even when they try to assassinate him, he doesn’t run away. He confidently heads TOWARD the shooter. He doesn’t hide. He doesn’t wallow. He doesn’t cower in fear. He confidently flips the situation to his advantage.

    Dorky, I know but movies like this help my mental state. It’s so easy to get down these days. SO EASY. 

    I want to head towards cancer and the havoc it caused my body.

    I want to challenge it. 

    CONQUER IT.

    More than anything, I want to prove the doctors wrong.

    I love proving doctors wrong.

    When I asked the gastroenterologist how to prevent bowel obstructions last summer after my hospitalization, he said “there isn’t anything you can do, with the amount of surgery you’ve had, you WILL have more obstructions and end up in the hospital again.”

    Never saw that dude again.

    Since I’ll be covering how I’m trying to fix my battered body – and prevent more cancer – I thought I’d share an overview on everything I do to heal.

    THIS IS NOT MEDICAL ADVICE! I work very closely with a nutritionist, naturopathic doctor, oncologists, medical doctors, massage specialists and acupuncturists to make decisions regarding my case.

    Also, everyone is so different. Healing requires many, many science experiments. I try to change only one variable at a time so I can accurately assess the results. People think alternative medicine is “woo-woo.” Quite the contrary. I evaluate progress using special functional medicine labs and my detailed lab notes. I create formulas X (diet) + Y (supplements + Z (treatments) = outcome.

    You can do this too. We’ll get to that later though. For now, my Healing List:

    1) Weekly acupuncture :: It helped a lot during chemo and currently, I get it for digestion, sleep, hormone issues, anxiety (yes, you can get needles for that!) and back pain. They believe I’ll get better which is important for my mindset.

    2) Visceral massage :: A relaxing belly massage with a highly trained specialist helps prevent bowel obstructions. I took two weeks off in July and a couple months off last winter and I was in pain and partially obstructed both times – all the proof I need.

    3) IV fluids :: I get IV fluids twice per week because I can’t stay hydrated on my own. This causes fatigue, back pain and bowel obstructions. We theorize this is due to lack of colon and adrenal fatigue. The hot, dry weather in San Diego didn’t help. 

    3) Supplementation :: I take over 20 supplements per day. I have a highly qualified naturopathic doctor and nutritionist closely monitoring my cellular levels of minerals and vitamins using a special lab called Spectracell. Nothing I take is random.

    4) Special diet :: After a LOT of trial, error, and pain, my “safe” diet includes chicken broth, eggs, avocado, fish, sweet potato and coconut based products – a moist/mashed diet to prevent bowel obstructions. Losing 4 organs caused a lot of scar tissue – and I’ve always had a sensitive gut.  

    5) Herbal tea :: A Seattle shop called The Herbalist sells a wonderful loose-leaf tea called Tummy-Ease Tea which I drink every night. It contains: peppermint leaf, flax seed, marshmallow root, slippery elm bark, orange peel, fennel seed and ginger root. 

    6) Stretching :: I have to stretch every night to help with pain and digestion.

    7) Meds :: I take daily thyroid meds. My sister and dad who have had cancer due to Lynch Syndrome are also on these meds. Not sure if it’s related but it’s interesting to consider.

    8) Hormone replacements :: I was nowhere near menopause when they removed my ovaries at age 42. Currently, I take 1.5mg synthetic estrogen, .5 bio-identical estrogen, 100mg progesterone. I’m still tweaking bio-identical testosterone. 

    BULLSHIT ALERT: it’s b.s. how menopausal symptoms are blown off. Even though I went through it instantaneously, I still had to hunt down the data on hormone replacement beyond estrogen. I’m pretty sure dudes also don’t get info as their hormones change with age. Sex hormones impact way more than libido. They regulate our energy, sleep, muscle tone, skin, etc. A lot of “you’re just aging” symptoms can be addressed safely and cheaply with hormone replacements. More to come on this. 

    Healing of this magnitude is a full-time job.

    I have to work 300% (500%? 700%?) harder than the average person to maintain 40-50% normal bodily function. Without these interventions…well, I don’t like to think about it. Plus, I know all of this prevents more cancer – my body needs every chance possible.

    I’m working on seeing more practitioners in upcoming months. I feel lucky to live in Seattle and have a background in nutrition and alternative medicine.

    That’s why I’m sharing here. Everyone deserves this information. Mainstream medicine often (not always) expects us to sit back and be passive participants.

    I refuse to sit back and wonder what’s going to happen.

    I try to evoke Jason Bourne. Chase down that which is trying to conquer me.

    Instead, I will conquer it.

  • Cancer Teacher
    Hi there, my name is Julie. I’m a nutritionist that’s had four cancers: melanoma, ovarian, colon, and endometrial cancer — the last 3 all at once due to a genetic disorder called Lynch Syndrome. Cancer can be horrific, painful, life-stealing. It can also be transformative, mind-opening and life-affirming. I’m working hard to get strong and find the silver lining lessons during this shit storm experience. Stay tuned to find out what I've learned, and continue to learn, from Cancer Teacher.

    Much love,

    Julie Negrin

    About Julie & Cancer Teacher