nakedglory

A neighbor was recently diagnosed with breast cancer.

This kind of news always comes as a shock. Certainly for me, but more for her; there are so many changes ahead. Whether she likes it or not, she’ll be thrust into a world where the landscape stays the same but everything looks, feels, and even tastes different. She’ll visit waiting rooms painted every shade of tan; flip through the office copy of “Prevention” magazine. Mostly, she’ll find it hard to focus so she’ll revert to her strange new habit of staring at the wall, emotionless, wondering what will become of her life.

There are many lessons that I’d like to share but don’t. She’ll learn these things as she goes, I suppose. She’ll question every one of her past behaviors, wondering if she’s somehow at fault. She’ll ask “why me?” and then move on, self-pity isn’t good for the soul.

And she will move forward, that I know. One baby step at a time.

But often for every step forward there are two steps back. Cancer is thorny like that. It can morph and change, give you false hope, slip through the safety nets that you’ve so doggedly put in place.

It’s like fighting an army where every soldier is armed with a different weapon. You fight back with whatever tools are at your disposal, never knowing when the arsenal will run dry.

The age-old battle analogy…but, does it help or does it hinder? Catherine Poole, who runs the Melanoma International Foundation, talks about “fighting” words in a recent blog post. She refers to the unnecessary pressure that it puts on the patient. Do you lose the battle if you haven’t fought hard enough?

There is evidence that suggests that rather than adopting a “fighting spirit”, patients should cultivate a “will to live”. It keeps your body off the defensive and focuses your energy on the positive outcome – life itself – not the negative distractions: the enemies, mutations, and malignancies that are as much a part of your body as your own hands.

Reflecting on my own experience with cancer, it’s been deeply internal; more mental than physical. While you endure physical pain as part of the healing process, you’d be surprised by how comfortable you become with the endless battery of hospital gowns, IV drips, fevers and barium milkshakes.

But mentally – that’s where cancer really thrives. It stretches its legs and buries itself in the sanctuary of your pliable mind, teasing you with one new challenge after the next. It delights in your uncertainty and sits back to watch you squirm. Sometimes you’re tearful, morose even, but often you’re enthusiastic, filled with energy, pen and paper in hand.

You try to hold on to these good moments; in fact you feel guilty for thinking otherwise. The guilt is enhanced by the emails and texts that reassure that “you’ll be fine! I know it!”

Which should empower you further, but the truth is, these encouragements feel permeable, like the softest, most buoyant cloud which lets the sun shine through but doesn’t make each day, each baby step, any easier.

I’ve yet to meet anyone who can, with any accuracy, predict the future. So while it’s nice for friends and family to say that in their heart of hearts things will be fine, the comfort in that phrase is often more for their benefit than it is for mine.

As the patient, you know the statistics, you can recite them backwards with one eye closed. You’re both dreamer and realist; hopeful for long-term remission, but cognizant that your future is anything but certain.

This “will to live” though, is powerful. You can choose to fall prey to the numbers and live in fear. Or, you can choose to ignore them and live your life with hope, squeezing as many droplets of happiness as you can from each stone.

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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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If you’ve read my recent post about Valentine’s Day, you’ll know that I’ve vowed to keep things PG-13 this year. And let me clarify before you get any ideas about this blog – I’m still talking food and beverage. 

There will be no mass consumption of alcohol, no next-day apologies…no questions as to whether I’m still technically part of the family. 

I’ve pledged to do more of the Valentine’s Day activities that you’d expect from a mother of three. Baking? Check. Handwritten cards? Check. Chocolate? Yes, please, all of it.

This’ll be a new thing for me. I’m never one to pre-plan for Valentine’s Day. Christmas? Different story. I once ordered presents in August, just to get a jump start on my wrapping. A summer babysitter once innocently asked what all the boxes were for, and when I responded “Christmas”, I could see furtive glances towards the nearest exit.

But Valentine’s Day always surprises me. It takes up a small amount of brain space during the month of February – in the form of “I think it’s coming up soon.” And then, one day, the kids’ backpacks come home with a bulky mound of candy and Hallmark-emblazoned paper with rickety signatures, and gosh darnit, you’ve missed it again.

In an effort not to be the Valentine curmudgeon of years past, I visited our neighborhood Michael’s to pick up some supplies. By the way, have you been to Michael’s? I know that the prospect of visiting a big box retailer may be less thrilling for those of you living in suburban areas, but they just opened one up in Chelsea and it’s like Disneyland. For crafters. I’m definitely not a crafter, but I can get sucked into the moment if I’m in the right place.

There were multiple aisles of Valentine’s day gear from stickers, to heart-stamped tape, paisley-printed cardboard, and plastic jewels to tack onto your love notes. I’m embarrassed to say how much I spent, but I’m comforted by the fact that we’ll have Valentine’s Day crafting materials until my youngest reaches Middle school.

So that’s what we did this weekend. For 15 minutes. Just until the novelty wore off, prompting me to subtly remind {nag} my kids for the rest of the weekend that each child in the class needs a card, not just close friends.

And those reminders were just for the girls. Sam took one look at the heap of pink and red construction paper and decided that he’d prefer to build Ninja stars.

Apologies, friends of Sam. There won’t be Valentine’s Day cards this year. I hope that you’ll forgive me; it wasn’t for lack of effort.

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Many people dread the coming of winter, the solstice, the shortening of days. In some ways, I crave winter. It’s my time to hibernate; to stay indoors unapologetically, to go to bed early and be awakened by a tip-toeing 3-year-old.

We were at the lake for the last two weeks and I steadily worked on my nesting PhD. So much so, that when Rodney arrived several days after us, he was shocked to find out that we’d barely set foot outside. The kids were happy, I was happy. We LEGOed, puzzled, cooked and watched nightly movies. Caught up on the classics: The STAR WARS trilogy and Back to the Future; The Parent Trap and Polyanna. We prepared for Christmas – the kids’ grandparents came to visit. We continued our nesting in full force: we ate; we traveled the globe one cocktail at a time: Manhattans, white Russians, apple cider Dark ‘n stormies.

It was the rest that I needed. The rest that we all needed. Unharried and unscheduled.

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Like a sitting duck, I knew that I’d have to cash in my chips after hosting Thanksgiving for 10+ years straight.

Is it really fair to expect that your relatives will drop everything to fly during the busiest travel weekend of the year?

Though, in all honesty, it was decadent to spend almost no time in the kitchen over Thanksgiving weekend. Yes, I made sure that our bird was glossy and brown; I prepped an appetizer; but other than a few menial activities, I didn’t set foot near a chopping block except to mix myself a cocktail. Perhaps we should indulge in this “hosted not hosting” thing more often…

Traveling to LA with three kids isn’t easy, but the Shake Shack at JFK airport was a welcome sight. On principle, Rodney and I got ourselves burgers, fries and beers at 9:30AM. Because that’s what you do when you see a Shake Shack. When you win the lottery, you turn your ticket in, no exceptions.

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The flight was relatively easy, and my kids, despite all of my nervousness, had nary a fatigue-induced meltdown, leaving me with 6 hours to watch 3 full-length movies. Did it matter that I kept having to pour apple juice over ice to my Disney-watching companions? Nope.

At last, we arrived! We had family rendez-vous at the Venice Pier, and so began our Thanksgiving weekend.

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I have the same affliction as my Mum – whenever a camera emerges, and I’m on the wrong (e.g. lens-facing) side, I freeze like a TV dinner. That’s a 2015 resolution – smile like I mean it. Like someone just told a dirty joke, those always make me laugh.

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