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

I want a job. I want to wake up, complain about waking up, turn off my alarm because it’s too early, and get dressed for a job. I want to put on my black work pants and a shirt appropriate for work. I want to stuff my breakfast down without thinking. Get in the car, already exhausted from imagining the day ahead, turn on the radio and sip my homemade coconut chai drink while navigating traffic. Traffic! I want to complain about traffic, my commute, how bad it is in Seattle now.

I want to get out of my car and roll my eyes at the flood of emails I’ve already gotten about a meeting that has been re-scheduled a million times. I want to roll into the office, smile at my friends, notice the stale baked goods in the lunch room, ignore the person that keeps trying to get me to join an after-work group, and hunker down in my cube. I want to stare out the window briefly wishing I was still in bed, knitting and watching my dumb TV shows. I want to turn back to my computer, adjust my keyboard and start typing out the first of many emails trying to get a handle on my workload.

I want to sit in a meeting bored out of my mind, texting my co-worker while trying to look interested in budgets. I want to wish it was the end of the day already. I want go back to my desk and laugh at my cube mate’s story about her/his weekend debacles.

I want to secretly, not so secretly, look through airfares for my next trip, somewhere new. Somewhere hot for the sunshine, some beach. I want to have a trip to look forward to and an excuse to buy new clothes. I want to make plans to order lunch because I’m too busy to go out. I want to order a salad with lots and lots of fiber. I want to eat beans. Feta cheese. Beets. Avocado for fun, not because it’s caloric and keeps me full. I want to pretend to debate which salad dressing to get (duh, balsamic vinaigrette every time). I want to mindlessly eat my salad while half working on my computer and half joining in the impromptu conversation started near my cube.

I want to forget to chew my food. I want to forget to enjoy my food.

I want to be like everyone else, sitting at their cube, complaining about their job, their boss, their benefits, their life.

I want to be like everyone else and order food without thinking twice.

I want to be like everyone else and finish the long day debating whether I should go to happy hour or the gym. I want to do both.

I want to go to the gym and sweat without worrying about becoming dehydrated. I want to go a bar with my friends and drink without worrying about becoming dehydrated. I want to nibble on the french fries my co-worker orders and laugh at her jokes while we eye the cute bartender. I want to have fun again. I want to wake up the next day slightly hungover and annoyed with myself for not going to the gym and eating too many fries. I want to promise myself that I will work out that evening.

I want to be annoyed about normal things. I want to be sad about normal things. I want to be frustrated by the parking ticket on my windshield. Or my boss. Or the president.

All while getting direct deposit checks into my account every two weeks.

I want a job.

[disclaimer: i can’t really do a job, this is not a request to hire me – it’s just what i wish for today…also i know that i’m oversimplifying what “normal” life is and that everyone’s got their shit, this is just the writing that wanted to come out of me today]

Shared in February on my personal Facebook 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

  • Words are like puppies and toddlers. The more you chase them, the further they run.

    I’ve finally learned to stop. And walk the other way. Until they starting chasing me.

    The writing voice I couldn’t find for so many years finally showed up when I stopped looking for it.

    Only when I was drugged and in so much pain, could it finally find it’s way through the complicated neurons synapsing in my brain.

    The drugs and pain creating a tunnel like the parting of the Red Sea.

    Creating a pathway for the words to finally escape.

    Now the words flood my brain every day, all day, especially late in the evenings.

    They come to me while I eat, while I walk, while I’m in the bathroom, in the shower, at the doctor.

    I tried for so many years to hold them back, afraid I would drown if I let them all in.

    But this past month, it became too exhausting to cover the holes in the dyke any longer.

    Whatever I was afraid of happening couldn’t be worse than how bad I felt trying to hold them back.

    So after a lifetime of trying to keep them at bay, I filled my lungs with air, held my breath, and removed my hands from the crumbling wall. I braced myself for the literary tidal wave that slammed into my fragile body.

    I am now gulping for air, clawing my way to the surface. Watery words twisting around my legs like seaweed.

    Currents of icy cold epiphanies and poetic prose gagging me.

    The salty sting of truths clawing at my skin.

    My only option now is to learn to swim through them and figure out how to navigate their powerful currents. And hope that I’ll master a few strokes. That, one day, it won’t all feel so overwhelming.

    But it’s a process.

    It takes time to master the river of words. I’m flailing, banging into large boulders, sometimes sinking, like a small kid suddenly thrown in the deep end of a pool.

    I’m trying to adjust. To so many things. Living with family. Surviving on liquids. Coping with pain.

    This new reality will take some time. Trying to wrap my head around being disabled, to calling myself an artist, a writer. To knowing my life will never be the same again.

    All I know is that I feel so much better when I let the words OUT.

    When I give them a little bit of attention. Drawing them on paper with black sharpies. Scratching them onto tiny pieces of paper in the middle of the night.

    Entering them here into proper form for the world to see. Rearranging them. Editing them. Even when I’m falling asleep, I’m trying out different words in sentences that are running through my mind.

    Maybe, if I share the words here on a regular basis, they won’t beat their little letters against my skin, my gray matter, my heart when I need peace and quiet.

    If I share the words here, they will find other people who will grab them, hold them in their hands, and stuff them in their hearts so they won’t be alone anymore.

    If I share them here, it won’t just be me carrying the long sentences, the heavy phrases, and even the tiny punctuations, up the long, winding mountain alone.

    If I share the words here, maybe we can divide them up between us and carry them all together.

    I think my body would appreciate that very much. If I shared the words and we all put them in our pocket and walked up the lonely, cold mountain together.

    All I know is that the words want out. And writing them down in private isn’t enough anymore.

    Now they want to be HEARD. Be SEEN. Find other homes, other hearts to live in.

    And my only job, the weary secretary, is to release them to the wind.

    Perhaps that’s what art is – releasing something that we can’t hold in anymore.

    So that whatever it is that we create, finds a new home, the right home.

    Because I couldn’t stop now even if I tried.

    They are tired of living in my phone and in my journals.

    They want to fly free and I can’t blame them.

    If you close your eyes and listen only to the whispering on the wind, they’ll find you too.

  • 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)

    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

  • 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

  • FullSizeRender (1)

    When I started painting for this post, I ended up with my theoretical children: 1 girl, 2 boys. Or is that me with 2 boys? Hmmm…I guess a part of me still wonders what they would be like…

    I wrote this Facebook post after casually mentioning in a previous one that I was “okay not having kids.”  This is the follow up.

    I realized in my last post, I glossed over the “I’m ok not having kids” topic without giving context. The reason I haven’t discussed losing the ability to give birth is because a) I am still processing it b) it’s SUCH a delicate topic. Some people get upset (offline) when I discuss certain topics, especially regarding kids/families. They feel I’m minimizing their experience when I share mine. I NEVER intend to hurt anyone when I express myself. If anything, I hope others realize they aren’t alone in their pain. I simply need to share my truth. It’s kept me sane throughout this entire experience. If a topic appears too painful, I completely understand if you can’t read it. I support you in doing what YOU need to do in order to stay sane!

    Giving birth or not giving birth – so many deeply painful experiences regarding this extremely personal issue. The truth is I’ve been ambivalent about it for years. I imagine some of it is due to the fact that I helped raised six young children when I was still a kid myself. There are four kids in my family and my four young cousins lived across the street. I had a baby on my hip for much of my childhood. Or, maybe it’s because I developed a chronic disease when I was 17 and have had serious health issues on and off my entire life. How could I knowingly pass my genes on? Or, maybe it’s because I’m an extremist – I would either be a total hippie mama with a bunch of kids running around while I garden or I throw myself 100% into my work, my writing, my art. I don’t know. It’s clear from my writing and painting that I’m still working it out.

    People say I can still adopt, which is true. Most agencies would probably have a hard time overlooking my “poor prognosis” (which is bullshit, of course, I’m not going anywhere). I think it would be tremendously unfair to burden children with the possibility that I may not be well enough to care for them. If I end up inheriting kids by way of a relationship – that’s different. There are two healthy individuals who are in charge of their well-being. For everyone’s sanity, I need to stay in a secondary position like Fun Auntie. Plus, I’m no spring chicken anymore. If others are cool with being older parents, go for it. I’ve been wiping baby butts since I was six years old. I’m good.

    I wish I’d been more cognizant of this internal struggle – which is why I need to write about it now. I remember feeling a lot of struggle, guilt, and worry that I kept walking past Door A. But without much conscious thought, I kept choosing Door B instead of the one expected of me. As a Jewish woman from Spanish descent, the pressure to procreate is epic. I didn’t comprehend the enormous pressure I felt until the decision was made for me.

    By the time I heard “you have two huge masses in your ovaries,” my response was “get them out.” Door A slammed shut. For the last two years, I’ve processed each loss when I felt up to it. I kept tiptoeing around this one wondering if a tidal wave of regret was going to wash over me. I waited. I waited. And finally, I realized, it wasn’t coming. If anything, I feel relieved. I’m relieved I didn’t pass on my genes. I’m relieved I can rest when I need to rest. I’m relieved I can use my spare energy with my wonderful nieces and nephews. I’m relieved I can care for my folks as they get older. Most of all, I’m relieved that I’m relieved.

    I know that there are many, many women who would not feel relieved in my shoes. Or, don’t have a bunch of nieces and nephews to get their kid-fix from. Or don’t want to adopt or have the means to do so. Nobody wants to have this choice stolen from them. Nobody. To call it heartbreaking is an understatement.

    My heart goes out to anyone that is struggling with this right now.

    You are not alone.

    Love, Jule

  • 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 (2)

    It’s dank and depressing at rock bottom. The mud that oozes through my toes smells like shit and I’m either too hot or too cold. There is no light, just stale black air – the same shade of nothing whether my eyes are closed or open.

    I want to breathe the fresh succulent air of a life outside doctor offices. I want an entire week without being poked with a needle. I want to escape this deep grief that shackles me to this gloomy cave. No matter what I do, I can’t shake it loose.

    Is this my life? This unbearable rain cloud pouring down inside my chest, my mind, my heart? Will I ever get strong again or am I trapped forever in this genetically mutant body that doesn’t work?

    I cry. I wail. I curl up in a tight little ball to stay as dry as possible as the loud, teardrops keep falling from above me and inside me. I can not live like this, I can not live like this, I can not live like this, I’d rock back and forth trying to soothe myself.

    I try meditating. I try taking a Xanax. I try binge watching TV. None of it distracts me from this tiny, miserable hole.

    My body grieves. My mind weeps. I spend hours staring at the wall, or what I can see of it.

    After months inside my tiny prison, my eyes adjust to the darkness. I notice small grooves etched into the cave and realize it resembles a rock climbing wall.

    I don’t like rock climbing. I’m not built for it. It scares me.

    But I can not sit here for one more second. I feel the lethargy of grief seep out of me. I’m now antsy, ready to do SOMETHING, ANYTHING to ease the pain of this wretched abyss.

    I step one foot in the wall and my fingers search for a ledge. I start to slowly climb. I’m a terrible at it. But I keep at it anyway. Instead of focusing on everything I’ve lost, I’m now concentrating on moving upward, forward, away from where I was. One foothold at a time. After awhile, my hands are cracked, bloody, exhausted. When my body screams STOP, I find a small shelf to huddle in for the night.

    I hear a noise close to my perch. I squint to see better. I can’t believe I didn’t see this before but other people are climbing alongside me. Were they near me when I was crying at rock bottom? Are we really alone down there or is it just an illusion?

    Now I’m distracted by my own journey upward AND connecting with the other climbers.

    Through 140 character messages. Watercolor paintings I draw on the sides of the wall when I’m resting. Leaving quotes to inspire whoever is climbing up after me. It feels easier now. I can see in the dark. My arms and legs are more agile, my body is stronger.

    I can see some light now. It’s faint and intermittent but it’s there. The weird thing is that I’m used to blackness now. I’m not afraid of it anymore. As much as I long for the light, I realize how much strength I’ve gained by learning to see in the dark.

    I know the smallest thing could knock me off the wall. It might devastate me. I will feel despair times one million. But I’ll know my way around rock bottom. I’ll know there are others in the dark I can sing to and with. I know that I can handle however long I’m supposed to be there. And I also know I have the strength to climb back out.

    But for now, thankfully, I’m not there anymore. And I’m not quite at the top yet either. I’m just sitting on a little shelf, painting, scribbling down writing ideas. I’m also creating a map. Instructions on how to survive down below – and how to escape.

    It makes the journey so much easier for me. Knowing that if I make it out, I might be able to help others find their way out too.

    I can do this.

  • 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

  • I wake up with my arms wrapped around my belly. There are weird lights shining above my head. My head feels so fuzzy. Where am I?

    I’m drugged. I’m in a hospital bed, my hands protectively covering my stomach. As if I could stop the creepy nightmare I just woke from, where people were slicing me, stitching me up.

    IMG_5077

    This is NOT what my scar looked like right away! This is from July ’14.

    Except this isn’t  a bad dream. This is real. They DID cut me open. They did remove organs, several of them. I start whimpering. The drugs, the hospital lights, the surreal realization that I’ve been butchered. It feels like my psyche, some deep part of me remembered the surgery and the only thing my brain can relate to is a Frankenstein movie. They made a hole in my belly, lifted out my baby making organs and my precious colon. Left me with a 7-inch scar. I cry out for my Auntie Janet. But she is no longer sleeping at the hospital. It is my first night alone after surgery.

    My roommate on the other side of the curtain hears me moaning in pain, crying, confused from the multiple narcotics creating sludge in my mind. She is an older black woman who had a brain tumor removed a few days earlier. She is healing quickly and gave me hope. She starts to coo, “it’s okay, baby, you’re okay, you’re safe. You’re all right” over and over again until I calm down. My family wanted me to have a private room. But I’m so grateful she is with me during this awful night.

    LOOKING BACK

    I write this nearly two years later. Twenty-two months exactly and conjuring up this memory leaves me sobbing, I can barely see the words I’m typing. They cut me open. And took pieces of me. They snatched away parts of me that I can never have back.

    My surgery was in March 2014 at UCSD. It’s a teaching school. My room was constantly visited by hordes of medical residents. They all wanted a look at my scar. “Oh, it looks so good!” they’d exclaim. As if I was some specimen that had been opened and stitched up according to their teaching manual in anatomy class. I was too subdued from the drugs to yell “I’m a person here! This scar your talking about is MINE. I had to suffer through it and now I have to live with it and everything it represents, the loss of my ovaries, my womb, my ability to digest properly. It may look P-R-E-T-T-Y to you but it’s horrifying to me. So please stop talking about it like it’s some work of art.”

    At that time, the scar frightened me – it made me so fragile. I couldn’t walk upright for weeks and had to protect it when I carefully rolled out of bed. But as it healed and the horror of the operation faded, it began to fascinate me. It’s weird little shape and clean pink line.

    Many months later, it started to look like art to me. An unintentional magenta tattoo. So much of being a cancer patient leaves us feeling powerless. Any time I can take ownership over something that has happened TO me and transform it into something powerFUL and positive, it helps me heal a little more from the trauma. If this was going to be anyone’s art project, it would be MINE.

    Screen Shot 2016-01-14 at 3.19.05 PM

    This image came to me one day, laying in bed resting as usual. I sketched the drawing on a post-it and showed it to a designer friend. She took it and ran with it – making it MUCH better than my little drawing!

    And that’s how my logo came into existence. That little line that signifies so much. My stomach, my body, my torso would never be the same. I would never be the same.

    The scar is the line drawn in the sand. Like many cancer patients, it’s the line that divides my life into two chapters: Before and After.

    And now it’s also become a path. A path that’s not a straight line but somehow still leading me to help others. I’m taking the experience that caused me so much pain and transforming it into something that, hopefully, will help others get through theirs.

    I can do this.

     

     

    BIG HUGE THANK YOUS to Kim Gilory for donating my beautiful banner design and Ruthie Edelson for taking the fantastic photo. Check out their phenomenal services on their sites.

  • 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

  • IMG_5826

    The last couple of weeks have been both difficult and good. The anxiety of waiting on my dad’s surgery was super stressful, especially from afar. Thankfully, he is doing fantastic and does not need chemo! Huge relief. I skipped chemo last week because my brother and nephews were in town. What a wondrous feeling it was to have an entire week off and spend time with family! My fingers started to heal, my digestion improved, and my fatigue lifted. Best of all, I got sweet kisses from the boys. Certainly the best thing that has come out of this experience is how pure and lovely normal moments are. For certain.

    The downside of taking a week off was having to go BACK. Maybe it was because my wonderful brother was here for me all week or maybe I just needed to let down, but there was a lot of crying and wishing I could quit chemo. It’s like taking a glorious shower after being dirty for months and then having to jump back into the mud. Blerg. I will continue, of course, but oh so tempting….

    Many people have told me how much they have learned about cancer from these posts and I’m glad to share what it’s like. Lesson learned: the end of chemo is the worst. The anxiety at the beginning sucks balls, no doubt. But it’s at the end when the chemo builds up, that’s tough. Your body feels beaten down along with your spirit. I get tired out of the blue, so tired my body feels like lead. I fell asleep in the middle of a UCSD cooking class (geared towards patients – I was not teaching it!) I get dizzy. My nails are tender and a funky brown. I’ve fended off the painful neuropathy in my fingers but dread it’s return. Before my week off, it was affecting my toes too which makes it uncomfortable to walk. Starting to get chemo eyes (usually dark brown circles but mine are red). Itchy, dry eyes, metallic taste in my mouth, no appetite. All the crap you hear you about but never think you’ll actually experience. But one shining light, I still have eyebrows and quite a few eyelashes. Stubborn Jewish hair finally comes in handy!!

    I realize this is not a beauty contest. But it’s still hard for me to catch myself in the mirror while in public and realize that’s ME. This is happening to ME. For some reason, it’s been hitting me harder this past week than before. I have CANCER. I’m getting CHEMO. They don’t know if it will COME BACK. I’m a PATIENT ALL the time. My Rite Aid pharmacists call me by NAME. For Pete’s sake, I have my oncologist under FAVORITES on my phone. How much does that suck? I can’t wait to move THAT back to my general contacts list.

    I had a couple of weeks where I didn’t cry but this past week, I couldn’t stop. I just want to quit the chemo so bad!

    I really, really try to remain upbeat. I try to focus on the many positives in my life. But I confess, I’m envious seeing the happy summer vacation photos posted (please keep posting them because it does make me happy to see everyone having a good time!! Helps me visualize MY happy photos coming soon…just being honest about the twinge of envy). I’m jealous of people that have their health intact, hair on their head, laughing with drink in hand. I know all those posts are just glimpses into a much larger story – nobody posts the huge fight about lost luggage or the boredom after dinner. But I’m jealous of even those moments. Why? Because they are everyday life. If you’re fighting about luggage, then you’re not fighting for your life. And I envy that. I want it back so badly. I don’t care how badly my fingers or toes hurt, I will crawl my way back to good health. I will go on vacation without a care in the world very, very soon. I will sit on the beach and drink too many margaritas and jump in the ocean, laughing. And I will fight about luggage again one day…. I can do this.

     

    This was written on August 15, 2014 – I had one month of four treatments left at this point.

  • 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