Family

Stories from a thoroughly average, beautiful life

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This is supposed to be a blog about life after cancer. 6 weeks post-recurrence, I’m still stunned that I’m now writing about life with cancer.

I apologize for my absence. It’s been weeks since I’ve felt comfortable enough to publish a post.

It’s not that I haven’t tried. A desktop folder, creatively-titled “Update” houses seven different versions of this post – “Update”, “Update on lungs”, “Update-2” – each no more than a few sentences. All cut short once I’ve realized that the tone is too personal, too optimistic, too vague or too depressing.

The root of my writer’s block is that steady states don’t exist. There are tremendous highs. I’ve tucked the kids into bed at night and promised to stay strong. I’ve told them that I want to exercise and get into great shape. “What kind of shape?” Lauren teased. “A square? A rectangle?”

We’ve laughed at the absurdity of this experience. Before I was wheeled into surgery, my Mum showed me a comment from the original cancer post. My good friend Hilary nailed it with both humor and timing:

“I know with all my being you will live until your boobs sag like droopy dog’s ears.”

Yes please, to all of it.

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But the inverse of levity is anxiety. There are days when I sit on the edge of sanity and wait for results…from surgery…from bloodwork, from scans, pathologies, treatment options….

I find it hard to be part of the real world. It doesn’t fit anymore. Beautiful moments are painful. Mundane moments seem bizarre and out of place. “Hi Jessica, did you know that July is National Hot Dog Month?” “Hi Jessica! Mary here with BE SOCIAL! One of my fun, delicious clients is….”

It’s often easier to retreat. To find solace behind a computer screen and engage with others who understand this world and speak my language. SNB, BRAF, PD1, MEK, NIVO, PEMBRO, IPI, EORTC 18071, and the most important word of all: NED. No evidence of disease.

It may be an obvious point, but a stage IV melanoma diagnosis stacks the cards against you. According to a top melanoma oncologist, whom I visited for a second opinion, I have a 75-80% chance of recurrence and there aren’t any treatment options for resected patients – high risk patients like me, who have no active tumors. The recommendation: watch, wait, scan every few months.

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My current oncologist – the person who’s been responsible for my care since I was first diagnosed at age 25 – has a different plan. She wants to hit the disease aggressively with several months of adjuvant treatment, a drug called Ipilimumab that will rebuild my immune system. 

My family and I had spilled tears of relief coming out of our visit. I’d emailed friends, ecstatic about what had essentially been hailed as a cure. “She won’t say the word “cure”, refers to it as a 4-letter word – but it’s as close as she’s come to seeing long-term remissions.”

What she didn’t highlight is that Ipilimumab only works for 1/5th of patients. That people often pull out of treatment because of the side effects, many of which last for months after the final infusion. 

Though I love my doctor’s positivity, she tends to focus on the best possible outcome, even if it happens at the bleeding right edge of the normal distribution.

But I’m not one to wait for cancer to return. To where, my liver? My brain? My spine? A 20% response is worth the side effects, and it’s a far better response than treatments that were available just a few years ago.

Besides, I’ve got food and nutrition on my side.

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I’ve been cooking as much as ever, finding inspiration in the cancer-fighting fruits and vegetables that I pick up from my CSA and local farm stands. I’ve come to respect the healing power of turmeric; like flour on a baker, you’ll find me dusted with saffron-colored fingerprints.

I know that some of you have come to this site in search of updates; I’ve had an easier time posting snapshots to Instagram, so wanted to point you in that direction should you worry about any silence on my end.

My goal is to make it through the next few months of treatment and get back to posting regular entries on this site. I miss it; I miss the friendships and the daily interactions. Most of all I miss telling the stories of mistaken identity, top secret GMO missions, and Valentine’s Day dinners gone wrong. Happy stories. True stories. Stories from a thoroughly average, beautiful life.

I hope to see you back here soon…

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Savory

Raw asparagus salad with feta, dates, hazelnuts and kumquats

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“Mom, can we get a bird?”

My mind lapsed to our family doctor’s favorite expression when you were sick and paid her a visit. “Bottom of the birdcage” was her way of describing the ick that would accumulate at the base of your throat. You’d nod your head. Your cold had birdcage written all over it.

“Mom, can we get a bird?” Sam asked again. “A tiny bird. One that sings.”

I couldn’t think about the song, the colors, how happy it would make my little man to have his very own bird. All I could think about was the bottom of the birdcage and who would have to clean it.

“I’ll make you a promise buddy. You keep asking and working on your good behavior and maybe for your birthday we can get one.”

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I’m more than happy to play my adults-only trump card, I’ve earned it. You need to play the losing end of enough childhood poker games to play that card yourself. “Sure thing” the adult says. But without the benefit of perspective, little Lord Fauntleroy with his batting eyelashes is unaware that he’s bound to stop asking by the time his birthday rolls around 9 months later.

“What’s that thing ya got there?”

I pointed to the pipe cleaner that he clasped between both hands, Cheerios lined up like little soldiers along its length.

Apparently they’d spent the afternoon building bird feeders in class. In celebration of Earth Day. April 22nd. Jackson’s birthday. I’d been so distracted lavishing my dog with attention on his special day (long walk, brand new rawhide) that I’d forgotten all about it.

What a shame, I usually make some kind of effort to celebrate.

I remember my first Earth Day celebration: climbing all 144 flights of the CN Tower’s stairs in Toronto, which at that point was still the world’s tallest building.

Last year we celebrated with a special Earth Day collaboration with TOMS; we participated in One Day Without Shoes. We walked around the New York City with bare feet. Maybe it wasn’t really around the city. But we did it for a few blocks, from our apartment to the site of the One Day Without Shoes bash.

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Savory

Middle-Eastern dilled yogurt flatbreads with spiced pumpkin seeds

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I’ve had an intimate relationship this week with Justin and his peanut butter, and it’s not what you think.

If you’re unfamiliar with Justin, you’ve probably run into his products at Whole Foods – or these days, more appropriately – just about anywhere. He’s the creator of uniquely-flavored nut butters (honey peanut butter, vanilla almond butter, etc), the eponymous peanut butter squeeze pack, and those nightmarishly addictive dark chocolate-covered peanut butter cups.

As much as I like Justin and his products, let’s talk about why I’ve got a bone to pick with him.

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For those of you who are familiar with food allergies, it’s prickly business. Label reading becomes part of the daily routine, a necessary evil that keeps food allergic kids safe and free of full-body hives. And herein lies the problem – we expect brands to keep to a certain standard and not throw us for a loop.

A few months ago we got the good news that Lauren’s skin test suggested that she may be able to tolerate almonds. Now I know this may not sound like a big deal, but when you’ve had to avoid all forms of nuts and sesame seeds for your entire life, it’s pure joy to think that you might be able to eat an almond croissant. A granola bar. A candy-colored macaron.

And, maybe a little too selfishly, I was getting tired of using pumpkin seeds. Pumpkin seed pesto…pumpkin seed dressing.…roasted pepitas…..soup garnish….brittle….Buehller….Buehller…..

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Drinks

Red juice for technophobes

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Some cooks prefer to prepare food as naturally as possible. Pie dough with a food processor? Bread dough with a standing mixer? Not a chance. Isn’t that what your hands are for? To pinch flour and water together, and feel the weight of the ingredients in your hands, just as your ancestors did for millenniums before you?

For better or worse, I am not one of these people. I’m an efficiency junkie and rely heavily on modern day kitchen innovations. I’m an owner of every tool for every need – cherry pitters, avocado slicers, vegetable noodle spiralizers, stovetop smokers, handheld smokers…would you like me to continue? For the record, Julia Child had the very same vices, so if you include yourself in the “technology-dependent” camp, you’re in good company.

With all of this technology talk, you’d probably assume that I was an early adopter of one of the high-tech blenders that flooded the market in recent years.

But I held off, and for good reason.

We had a blender, and a high-priced one at that, courtesy of our wedding registry. Soon after our engagement, I’d walked through Crate and Barrel with a handheld version of a supermarket checkout scanner, price shooting SKUs with eager abandon.

But this was back in 2004 when Vitamix (and its descendents) hadn’t yet captured the hearts and wallets of health fanatics everywhere. The first time that I heard about one of these high-speed blenders was years later through a friend of mine, who waxed poetic about its nutritional benefits. Despite her protestations, I stuck to my old machine, resigning myself to a blender that produced a fine margarita, but would cower if confronted by a raw beet in a dark alley.

The turning point in my newbie juicing career came when I became part of the Instagram community two years ago. And my – what juices and smoothies these vegan, paleo, gluten-free and other health fanatics were making: Vegetables, herbs, fruit, bee pollen, spirulina, and maca powder? XO Jane addressed the issue with the eloquently-titled “Let’s talk about the weird sh*t I put in my blender”.  Clearly, I was behind the times. All the cool kids were doing it; it was high time that I got myself out of the dark ages and invest in a blender that could pulverize a chain link fence along with my daily allotment of frozen berries.

I did my research – Vitamix was the market leader, with a price tag to match. But one that I kept hearing about – Blendtec – was delivering equivalent results with a significantly lower cost.

And it came in red, my favorite color.

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I jumped on the bandwagon, ordered my Blendtec, and opened it with a weepy glint in my eye. And as so often happens with any new purchase, it sat on my shelves, neglected and unloved, for 5 months.

This is a pattern, and – whether you call it technophobic or lack-of-time-aholic – it’s a problem. I’m always giddy to make the purchase on Amazon, and dread the unpacking/setup process.

The issue, by the way, is purchase-agnostic. It could be a cable for my computer, a new backup drive, even a highly-desirable a new flash for my camera. No matter how much I want or need the product in question – if there is any assembly required (defined as something that needs any effort beyond extraction from a box), I hide my little treasure and pretend that it doesn’t exist. I’m guessing that many share this illness; own up if you’re a member of this unfortunate crowd. Maybe we should form a support group.

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100 new foods

Abate Fetel pears

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I found these Abate Fetel Pears at Whole Foods and wanted to give them a try. The name alone makes it sample-worthy, but it has the most beautiful green and blush pink color. I usually like to buy locally-grown produce, and these ones are from imported from Italy, but I had a feeling that the kids would love this week’s investigation. And in the process, I’ve found my new favorite pear. If you can find this variety, make sure to give it a try – it’s juicy and really flavorful. 

ME: OK, do you know what the mystery food is?

LAUREN: I want to see it! [gasp] Oh yeah! I really wanted to try that one.

ME: Look how pretty it is.

LAUREN: It’s so pretty. Can I hold it?

ME: Yeah. It’s kind of like pink on one side…

LAUREN: Yeah! It feels weird too.

ME: Yeah, it feels a little gritty doesn’t it?

ME: Well, that’s why we touch things and explore things, right?

LAUREN: It feels like it’s been rolled in dirt.

ME: [laughing] Rolled in dirt – that’s a funny one.

EMMA: Ooo…

ME:  Can I have it, Emma?

LAUREN: Can I feel it again? It feels kind of cool.

ME: Yeah, you can feel it one more time.

SAM: UGH.  Yuck.
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