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

HONEST CONFESSION: I blame my cookbook for my health. So many people have suggested that I write a book. And I’m not sure if anyone notices but I often shy away from the idea. There is a reason why. It’s a long story but essentially I pitched my kids cookbook to publishers a tad too early – 2006 or thereabouts – before the kids cooking thing became “trendy.” I decided to self-publish. I used up my entire nest egg. It took me several years. I ended up going through a horrible company (which is why it’s priced so high on Amazon, so high no one buys it). I published it in Sept 2010. They found the melanoma shortly afterwards. I had my one and only UC flare-up in nearly 20 years that summer. When they found the ovarian masses in early 2014, she said they’d been growing for 3 years. I knew immediately that they started growing in 2010. I think I took off maybe 10 days that whole year. I worked 2 jobs that summer. I didn’t take care of myself. I wasn’t eating right. I stressed myself so badly…This is why I rarely even mention that cookbook – even though I’m so proud of it. I think it turned out great (except for the photos). But I also hate it, truth be told. It represents everything I did wrong with my business, my health, my life.

Did I trade 4 organs and, possibly, my life to accomplish my dream?

Should I have picked the less complicated road? Not pursued being the free-spirited artist? Married some nice hunk, gotten a regular ‘ole job and worked on my garden every spring? If I’d gone down that road, had kids, and been stressed out from normal life, would the cancers still arrived in my life? Was this road some sort of destiny? Or, do we have other parallel lives that we can choose to walk down?

I’ll never know the answers. At least not while alive.

I know that it’s a huge compliment that people suggest that I write a book. It’s just that for me….the idea is so loaded. Even growing my online presence frightens me. More exposure leads to more work. More work leads to more stress. I know it doesn’t HAVE to be that way, but that’s all I know. I don’t seem to have that “turn off work” button most people have. And it scares me. So I don’t push my blog out to the world. I rarely share my posts on Twitter.

Brene Brown said she had a conversation with herself about why she kept her work “small” for so long.

I know why I’m keeping mine small. Because I’m terrible at managing work stress. Because I don’t want more cancer. Because I feel overwhelmed at the idea of going bigger. It could literally kill me. If I don’t handle it correctly.

In our culture, if we have some sort of talent, our first thought is to leverage it for a bigger audience, monetize it, get public adoration.

I see it all differently now.

In so many ways, I traded 4 organs and my health for this writing voice. As I’ve said many times, if it happened for a reason, because I’m supposed to help people, then I’m ok with that. But I don’t want to push it out into the world any earlier than it’s supposed to be. I want to be the singer on the side of the road, bringing my music to whoever wants to listen. Let it all unfold organically.

I wanted to be a beautiful writer so much of my life. More than anything else in the world. We are indoctrinated to want things that culture says we should want. But I bucked all of that and went with my heart.

I tell all the young people I mentor now to go to business school or get a technology degree. The artist’s road is a rocky one.

The reality, though, is that there are always sacrifices, no matter which road you take. I feel like most of my peers in their mid-40s, we all get that now. There is no certainty in any road we choose.

It all feels too fragile right now to worry about organizing it, submitting it, editing it for other people…sigh, maybe one day.

It’s my therapy, my joy, my absolute luxury to finally be able to express what’s in my heart, my soul. And for now, that’s all I need it to be.

Thanks for being my muses, my writing coaches, my teachers. You guys know by now, that I could never have found this voice without you listening to me these past three years.

A voice can’t be found if nobody hears it.

I will forever be grateful to you for that. It’s made this journey so much easier to bear….

Much love, Jules

Original post on my personal FB page

  • 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

  • How do we stay calm in the midst of a crisis?

    How do we set aside emotions that blur our thinking?

    How do we stay hopeful when our world is collapsing around us?

    Like people trapped in a car that’s gone over a bridge, the water level is rising. Some people are in denial. Others are fruitlessly banging on window that will never budge.

    I don’t want to act. I want someone to save me.

    Or, I want to let myself sink to the bottom and let go.

    But. I do neither.

    It frustrates me, this urge to fight. I’ve spent most of my life feeling ashamed of it. 

    Why can’t I be like everyone else? Just accept things the way they are? Why is the path of least resistance so hard for me to walk down?

    Why can’t I just say “I’m not healthy enough for this” and stay quiet.

    My plan this winter was to finally rest.

    After three years of non-stop stress, I was going to paint, write, do yoga, and find weird but amazing healers.

    That’s it.

    Now here we are. This Resistance work is exhausting. I feel too old for this shit. But I can’t just stay home and knit. Even if that’s the logical decision for my body. I just can’t. 

    As challenging and tiring as this Resistance work is, it fires me up. It gives me somewhere to channel my fear, my frustration, my helplessness.

    It allows me to forget my own fucked up situation.

    me getting fluids

    I’m giving myself IV fluids at home. The bag on the left stores the saline and the tubes are to clean the port needle in my chest.

    I finally broke down and got IV infusions at home instead of the hospital on Sunday.

    While everyone else was drinking beer and watching football, I was learning how to not kill myself while flushing the port needle in my chest. 

    While everyone else was fighting online about who is right and who is wrong, I was warming a large bag of saline in my lap so it wouldn’t be so cold when it entered my body.

    While everyone else was nibbling on leftover super bowl snacks, I was drinking my second jar of chicken broth hoping the fish I ate the day before wouldn’t get stuck in my intestines.

    My little world is weird.

    And now the outside world is even weirder.

    I know the home infusions is a good thing. A great thing, really. It will give me flexibility, freedom and some other f-word I can’t think of right now. (Oh I just thought of a good one. Hey now, I still have my sense of humor!)

    But it also makes me feel like another f-word that I haven’t written about yet.

    Freak.

    I feel like a freak of nature. I always have, truth be told. My shock of red hair as a kid. My Jewishness in a mostly white world. My inability to do what is “expected.” My urge to fight for what is right.

    But nothing, NOTHING has made me feel more like a freak of nature than what’s happened to my body these past few years.

    Losing four organs.

    Surviving on a mostly liquid diet.

    Requiring IV fluids each week.

    Finding ways to make sure I can poop.

    My body doesn’t work right and I do everything in my power to fix it.

    But this new administration doesn’t care about me.

    I don’t matter to them. Even though I dedicated my career to teaching kids. Even though I’ve been paying into the system for 30 years. Even though I ended up with four cancers after being a health nut for my entire life.

    I DO NOT MATTER TO THEM.

    None of my fellow disabled or medically dependent patients matter to them.

    All they care about is money and power.

    All I care about is staying hydrated and eating solid foods in the near future. 

    Priorities.

    And now, for the first time in my life, my freakishness might be an asset.

    My freakishness AND my urge to fight for vulnerable people puts me in a unique position right now.

    How can I stay silent if I can make a difference?

    How can I put my own needs before my tribe if sharing my story gets people to listen?

    How can I NOT try and do everything in my power to help people that are under attack from heartless leaders?

    So I Resist.

    Because that’s what I’ve been doing for the past three years: Resisting. Resisting dying. Resisting going nuts. Resisting giving up.

    I’ve gotten really, really good at resisting.

    And now, it’s time to take those lessons and use them for the greater good.

    I spend my time researching, strategizing, and collaborating with allies.

    I stay up late reading article after article, contemplating my next move, my next plea, my next call to action.

    I don’t know why all of this is happening at the same time as I am adjusting to this disabled body.

    All I know is that I will go down fighting.

    Even if this administration gets it’s way – and I don’t think they will if we keep at it – I would rather die fighting every step of the way than to hide until it’s over.

    Even if it means I will have enemies. Even if it means I never make it to yoga. Even if it means I don’t have time to relax.

    Because eventually, like healing, resistance eventually gives way to liberation. It’s slow. And it’s hard to see. But it’s possible.

    And that is why I Resist.

    Are you with me?

  • 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

  • A lot of people are scared and unsure how to help. So I made a list of ideas. I’ve learned through my medical hell that it feels better to channel panic into action!

    Step 1: We can’t do everything. Pick one or two issues you’re passionate about and start reading everything you can and following experts tweeting/writing about it. News moves fast, Twitter is quickest. I also constantly Google “ACA repeal” to stay up to date.

    Step 2: Find local and national organizations that are working on your two issues. See how you can get involved and stay in the loop. Get on their mailing lists, read their sites, follow them on social media.

    Step 3: Test different methods of activism THAT WORK FOR YOU. Nobody can do EVERYTHING. It’s like working out advice – find ones that suit your personality, you’ll be more likely to stick to it. This is a marathon, not a sprint. We need to plan for the long game.

    IMPORTANT: Don’t expect anyone to hold your hand. It’s chaos now, get advice from experts on your topic and then jump in and DO SOMETHING!!

    TEN WAYS TO RESIST, ADVOCATE & SUPPORT

    For people that prefer behind the scenes:

    1. CALL :: Spend 30 minutes calling Congress and other elected officials every morning. Add your elected officials – and GOP in other states ONLY for issues that will affect your district like education and health care – to your phone. Find scripts online. Be consistent. This DOES work.

    2. MAIL :: Buy a stack of cheap postcards on Amazon, print out elected official addresses and have them ready to send as soon as issues come up. They DO tally these.

    3. CONTRIBUTE YOUR SERVICES :: if you’re a lawyer, organizer, doctor, court advocate, social worker, tech person, call a local organization that is working on your two issues and offer to volunteer.

    For people who prefer meeting up:

    4. MEETINGS :: Start studying your local elected officials and setting up meetings. Drag your friends with you. Adam Smith’s staffer is even driving to me next week. Only 15 minutes long but very powerful.

    5. TOWN HALLS :: Get involved with organizations connected to your issues and observe how they advocate at town halls and other meet ups.

    6. ORGANIZE :: Create meet ups, rallies, postcard writing parties, protect mosques and people walking into to Planned Parenthood. If you’re good at organizing, we need lots of people creating events.

    For people stuck at home:

    7. SPEAK UP ONLINE :: it’s scary to challenge antagonist posters, but I’ve found they mostly slink away when you ask them for facts. Also, try to keep your emotions under wraps and keep it dignified, otherwise, it’s harder to prove your point. Calmly and logically sharing facts shuts them down better than yelling at them.

    8. DONATE :: if you have money, but not a lot of time, donate to ACLU, Planned Parenthood, International Rescue Committee, Amnesty International, Greenpeace. So many good ones – there are way more – study up and share others in the comments. Create recurring monthly donations. A lot of us can’t do this so we thank those that can and do!

    For people who want to get radical:

    9. PROTEST :: Marches and protests are powerful. However, I recommend that you speak with veteran activists, especially people of color, that have years of resisting experience before doing anything beyond a peaceful protests. I do not condone anything BUT peaceful protests. Frankly, I think violent incites more violence and loses us credibility.

    10. EXTREME ACTION :: Remember the woman who lived in a tree? I know nothing about this sort of activism but there are others that do. Please please be safe and do your homework first!

    CREATE AN UNDERGROUND :: We will need transportation for people and things. I can’t say anything else about this here…

    NOTE: complaining and whining on the Internet is not useful. Either share something helpful, support others in the Cause or use your energy to challenge The Misinformed. 

    Now grab a bucket and start putting out the fire!! The more of us that stand up now, the quicker we can nip this in the bud!!!!

    Keep at it!

    Much love❤️ Jules

  • 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

  • FullSizeRender (3)Dear Electors,

    My name is Julie Negrin. I used to be a kids cooking teacher and a nutritionist with a thriving career. Now, I am a disabled woman who has battled four unrelated cancers. In the last three years, I’ve lost four organs, my business, my independence, and the ability to digest solid food.

    But I have not lost my voice.

    And I plead with you now.

    Please, please vote for our country on Dec 19.

    This isn’t about party anymore – nor policy. This is about whether or not we stand by and let someone destroy our beautiful nation.

    If he’d spent the last month behaving rationally and making sensible decisions, I wouldn’t be writing this letter. Instead we have a minority president-elect who has…

    …zero policy and diplomatic experience and has not demonstrated requisite ability or willingness to perform as the president of the United States.

    …defied the Constitution and is unwilling to learn it, let alone follow it.

    …promised to start a trade war.

    …destabilized international relations.

    …refused to distance himself from his financial holdings.

    …committed to dismantling our health care system and public education.

    …bragged about destroying any person – or company – who disagrees with him.

    …plans to renege on international agreements including a nuclear arms deal.

    And that’s all before taking office.

    He thinks he is above the law.

    He is irrational, unpredictable and throws temper tantrums – and unless you intervene, he will be in charge of nuclear codes during his 3am social media rants.

    He could tweet us into World War III.

    What I’m asking you to do is not some wild lefty plot.

    What I’m asking you to do – along with millions of Americans who have signed petitions and sent you emails – is what Alexander Hamilton expected electors to do:

    Stop a tyrant from sitting in the oval office and prevent poisonous corruption from infecting every branch of our government. 

    Otherwise, there is high probability that one day, you’ll wake up to a deeply divided country with violent skirmishes breaking out frequently, scared and poor citizens, our economy and global market in the toilet, threats of war from other countries and you’ll think: I could have stopped this. I was given an opportunity…

    And I didn’t do it.

    If only I’d listened. If only I’d listened to those annoying liberals who were trying to warn me. 

    If only I’d voted for that woman. Or banded together with all the electors and voted for another Republican in a historical bipartisian move.

    If only I had switched my vote – which sounds so simple now but felt so difficult then – I could have prevented so much destruction, so much misery for our children and our children’s children.

    If only.

    People assume that being a hero is easy. That taking a huge risk must feel good because it’s the right thing to do. 

    Unfortunately, being a hero is terrifying. It would mean reaching out across party lines, coordinating an incredibly complicated political move, enduring jeers, upsetting people you love, enduring enormous amounts of anger.

    You must feel like the weight of the world is on your shoulders. 

    That’s because it is. 

    I’m a small, sick, humble woman down on my knees, tears streaming down my face, pleading with you.

    Begging you.

    Please save us. Save our country. Save the millions of lives on the line. 

    Please be my hero. Be OUR hero.

    Use your vote to save our country.

    You’ll be written about in history books as the saviors who pulled us back from the brink. 

    You’ll be American heroes. 

    I believe in you. 

    I also thank you for your public service and wish you the best of luck during this tenuous time.

    Much love,

    Jules

    ****you can share this post from my Facebook page: https://www.facebook.com/julie.negrin/

  • 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

  • Thanksgiving photo with title

    This was taken on Thanksgiving ’13, a few days before I got the call about the cancerous colon polyp that was just the beginning.

    I realized the reason I’ve been in mourning the past year is that I’m grieving the death of someone. A very important person. You could say the most important person in my life.

    I’ve been trying to cope with the death of myself. My former self. My pre-menopausal, fertile, fiber-ingesting, energetic self.

    The woman who would hop on a plane and travel abroad alone.

    The woman who could juggle 8 different freelance gigs at once.

    The woman who could work 10 hour days on her feet, then go for a run at 9pm at night.

    The woman who spent 5 years healing her colon in her twenties so she could travel and eat the foods she loved, salad, popcorn, kale, nuts, dried fruit, beans, grains. 

    That beautiful, lively, brash, opinionated, feisty, athletic fearless woman died on March 14, 2014.

    The doctors love to warn you about the potential death of your body.

    Nobody mentions your metaphysical death.

    The hardest part is trying to figure out who this new self is in the regular world.

    I still have knee-jerk reactions from my old life:

    Sure! I’ll come to your party in a few weeks!

    Yeah, let’s plan a trip next year!

    Absolutely, let’s grab a bite out next weekend!

    Then, reality sets in. Parties stress me out because my energy and digestion are so unpredictable. I can’t travel. Eating out is fraught with anxiety unless I’ve tested the restaurant and found my “safe” meal.

    I wish I knew how to explain this new self to others. But the truth is she is still a bit of mystery to ME.

    I’m getting to know her while you’re getting to know her.

    When I’m around others, I’m thinking: Did I laugh at the right moments? Is it weird that I am visiting the bathroom every five minutes? When people ask how I’m doing, how much do I share? Or, do I pretend I’m normal so I don’t make people uncomfortable?

    I attended a family gathering right after I moved back to Seattle in May. I saw someone I grew up with and the poor guy, trying to make casual conversation, asked where I was living. I figure most of the Jewish community knows my story. But just in case, I test it out. “I’m living with my folks, ya know, recovering from some cancer!” I try to hold my smile as horror washes over his face, clearly unsure how to respond. Damn, he hadn’t heard. Fuck, walk away, Julie. Just walk away.

    I used to love socializing, being outdoors, eating fabulous food, my culinary career, dancing with friends….

    What happens when most of your identity gets stripped away? 

    How do you evolve into a new person when you’re still figuring out your physical limitations?

    Why does our mainstream medical world expect us to carry on like nothing has changed?

    Where do I fit in the world now that I’m this different person?

    I still laugh easily. I’m still a hugger. I’m still passionate, feisty and overly protective of the people I love. 

    But I have changed. I’m more serious now. “Life is short” isn’t some motto I see on Instagram and keep scrolling. That ambitious self slipped away along with my hormones and my uncertain future. My focus is finding a way to stay alive AND improve quality of life. And hopefully help some other people while I figure it out.

    What I DO know: this new woman is more introverted and quieter because talking takes energy. I’d rather paint than go to a party. I’m more compassionate – I’ve always been a mushball but now I’ll cry along with you during your grief. I’m less reactive – most things aren’t worth getting worked up about.  

    I think I’m near the end of grieving for my old self (will it end?). Last week, I realized that I was crying for someone that wasn’t all that happy anyway. Yes, I could travel and eat more freely. But I was also a chronic worrier, a workaholic, angered easily and struggled with expressing my feelings.

    I’m not the first person to go through cancer and feel like it’s a chance to start fresh. 

    A rebirth.

    I think a lot of the pain over the last few months was grieving AND labor pains. Trying to give birth to this new version of myself, one that isn’t scared to call herself a writer and an artist. Or, share her innermost and feelings thoughts after a lifetime of hiding them.

    Best of all, I’m finally starting to grasp the alchemy of love. Understand it’s dimensions, it’s depth, it’s power. How it feels to open yourself up to it, ask for it, receive it from all kinds of sources, ANY time, ALL the time. More importantly, this new Julie Negrin knows how to give love, unabashedly without hesitation, hollering “I love you” across the street as we part or into the phone as we hang up.

    And that’s how I’m managing to walk away from the old me and head toward the new one. The old me could do a lot of things I can no longer do. But the new me truly knows how to love.

    I’m not the same person. But…I’m finally accepting that this might be a good thing.

  • 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