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

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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

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    I’ve been through so much, I thought losing my hair would be the least of it. I figured I’d rock some cool hats from my huge collection and have some fun. A couple months and it will grow back! I think bald heads on dudes is super sexy and Sinead O’Conner pulled it off so beautifully. No biggie, right?

    But it sucks! It’s this horrible external reminder of what I’m going through. EVERY TIME I LOOK IN THE MIRROR, I’m being reminded that I’m a CANCER PATIENT CANCER PATIENT CANCER PATIENT CANCER PATIENT.

    I know that it shouldn’t seem like a big deal. I would think that if I wasn’t the patient. I mean, really, who cares? It’s only temporary. It will grow back. But it IS a big deal. I feel ugly and weird looking. I’m crying as I write this. And I know I shouldn’t complain because my eyebrows and eyelashes are still intact! When I have a hat or scarf on, I look pretty normal! And it’s STILL really upsetting.

    I still have SOME hair but it keeps falling out – and it’s so thin that there was no point in keeping it anymore. The little hairs everywhere were driving me nuts. So, it was shaved away. I feel so exposed. I feel odd without color on my head after being a redhead, and then brunette, my entire life. I feel like I can’t hide what I’m going through. Before, while running errands, I could pretend to be normal. Not anymore. I know that I’m still getting used to it – it’s only been a couple of days since the shaving. And I WILL get used to it but it’s been a lot harder than I anticipated. I literally gasp every time I look in the mirror. I think the hardest part is that I don’t feel like ME. Who is this person looking back at me?

    On the upside, my body is feeling strong on my Non-Fatigue days. Fatigue Days are tough – your brain is awake but your body feels like lead. You can’t do anything but just stare at the wall, incredibly boring. But I do feel like I turned a corner with my digestion and overall strength. I put on a couple of pounds and have decent energy on my precious good days. And I am slowly starting to engage with the world, which feels amazing after being in lock down for so long.

    My bald head conflicts with the growing strength of my body. I know I need to suck it up because the reality is that my hairless head is the only way you can tell I’m sick. Wait, that sentence doesn’t even sound accurate. That’s the strange thing. I don’t FEEL sick. Just realizing this…maybe that’s why the bald head is so hard for me. I felt pretty healthy before the surgery which is bizarre if you think about three cancers growing at once. But I haven’t felt “sick” this entire time. Now, I LOOK like a sick person. Makes sense that it would be upsetting. In my face, literally.

    Overall, though, I’m told I’m lucky I’m holding up so well for being halfway through. I start my fourth cycle next week. Most people are super beaten up by now. I don’t know why I’m doing okay. Good diet? Acupuncture? The supplements? Greek genes? I have no idea. But I’m grateful for it. I need to get my wig cut and styled. I think that will help. And get the hang of scarves. But the whole thing is pretty shitty and shocking. Somehow I will get through it. I can do this.

    Originally posted on June 18, 2014

  • 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

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    This was written the night before my first chemo treatment of Taxol and Carboplatin on 4/17/14

    I know it’s normal to be afraid of chemo. But my rational brain keeps telling me that I shouldn’t be afraid – so many people have been through this and are doing great now! But this fear is different than anything I’ve felt before. Every time I think of the IV starting, I feel a pit in my stomach. So not my style, as one friend put it. I’ve jumped out of a plane, scuba dived with sharks, traveled foreign countries on my own – even lived through a bombing in Israel and managed to get on a bus after that. It’s not like I didn’t feel fear at any time – I did – but it didn’t feel like this. Never like this.

    I do remember one huge fear. In my twenties, I was afraid I’d never heal the Ulcerative Colitis that doctors said I’d have “forever.” For nine years, I didn’t know when it would come back! But I just remembered the moment I made a huge shift that marked the end of that disease. It boiled down to letting go of of the fear of getting sick. I forgot this memory until now so maybe writing about this is more cathartic than I anticipated.

    It was right after the bombing and I was incredibly upset – understandably. I remember thinking that if there was ever a time I would have a stress-induced colitis flare-up, it would be then. I ran through all the probable scenarios: prednisone (steroids that I hate), possible hospitalization, not being able to eat. But I remember standing in my cousin’s Jerusalem apartment, shrugging, and saying “oh well if I get sick, I’ll deal with it” and somehow I released this fear I’d lived with for years. I knew I would survive all those scenarios. Maybe knowing true fear – being in a war zone? – suddenly minimized the fear of getting sick. I don’t know. The disease petered out over the next year and I’ve been in remission ever since. (Mind you, I was doing a zillion healing things for my body at that time in addition to this change in perspective. Healing did not happen overnight at ALL.)

    I have done it before – released a HUGE fear. I can do it again. The trick now is to let go of the fear of something I have NOT EXPERIENCED YET. I’m struggling with it for sure.

    Perhaps my wise 12 year old nephew is right when he told me “it’s the cancer you should be afraid of, not the chemo.” Maybe I need to look at the big picture and recognize that my fear of this temporary treatment is not serving me because ultimately, it’s going to save my life. Like my fear of having a colitis flare-up, it’s small in the face of getting blown up or dying of cancer. It’s a teensy, weensy little fear that I can shrink with my mind at any time. Perhaps I should imagine the fear as a stone – and instead of it being this huge boulder, I’m shrinking it to this tiny rock. A rock that I can throw away at any time because it’s small enough for me to toss aside.

    Or, my Uncle Larry, who went through chemo in the 80’s suggested, think of it like an athlete: chemo day is game day. Focus on preparing for it. Think strong. Create a routine. Go into your own world. Focus. I like this outlook. Everyone develops their own mindset to deal with this. I guess I’ll figure out mine.

    It feels good to share my fears with you guys. And your advice helps A LOT. I’ve never been a public sharer but for some reason, this doozy of a diagnosis has helped me shuck that pride aside and ask for help. I’m glad I did because I’m learning a lot from all of you and from the experience of being vulnerable. 26 hours and counting. I can do this. My new mantra: I can do this.

    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