Stories from a thoroughly average, beautiful life

Monday, July 20, 2015

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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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35 comments

Travel

Truth or Consequences, New Mexico

Monday, June 8, 2015

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“Do you smell it? It’s the smell of millions of pennies.”

It was the first thing that I noticed after pulling the car off the road on our way to Truth or Consequences.

We’d seen the mines on the way into Silver City but with our pending lunch reservation and sputtering tank of gas, didn’t feel that a close inspection of the mine would be a good use of time.

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Now, there we stood, facing a magnificent expanse of copper and stone, the Santa Rita copper mine; a mine used by Apaches, Spaniards, Mexicans, and Americans since 1800.

There’s something eery about a mine of this size. There’s the smell – familiar yet different; copper tinged with the industrial smell of truck exhaust and smoke. But more surprisingly, there’s a stillness in the air. There are no people, no visible machines, just a few trucks, the size of ants, groaning imperceptibly beneath their heavy loads.

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We took in the immense view, squinted at the Kneeling Nun rock formation at the northern tip of the mine, and then climbed back into the Beetle. Next stop, Truth or Consequences.

After the popular NBC Radio program of the same name promised a yearly festival to the town that would change its name to Truth or Consequences, the town formerly known as “Hot Springs” made the switch.

Our destination in Truth or Consequences, or “T or C” to the locals: the Sierra Grande Lodge and Spa, a property recently purchased and renovated by Ted Turner Enterprises. Although the natural hot springs have always been the main event in Truth or Consequences, the town and surrounding areas are readying themselves for a new frontier in tourism: space exploration. Spaceport America, home to Virgin Galactic and SpaceX, lies 20 miles to the southeast.

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The hot springs in Truth or Consequences are known to be some of the best in the country, without the distinctive sulphur smell that accompanies so many other hot springs locations. We arrived at the hotel and booked private tubs – each one situated in its own soaking room. Some of the hotel’s soaking rooms are minimalist while others are designed like Turkish baths, with extensive tiling and wall murals.

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21 comments

Travel

Silver City, New Mexico

Monday, June 1, 2015

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Welcome to part 2 of the food tour of Southwestern New Mexico.

Last time I recounted our harrowing road trip through the Gila Forest on a thimbleful of gas.

We made it, clawed our way over the finish line. Which, I imagine is how Silver City’s bike race contestants felt the day before.

Silver City hosts The Tour of the Gila bike race every year – where the world’s toughest athletes come to compete before they head to their next big event: the Tour de France.

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Having made it through the forest with a conventional gas tank, I can hardly imagine the muscle and fortitude that it takes to climb those mountains on human energy alone. Riders are a different breed and we were lucky to see a few trucks packing up their bike gear on the day that we arrived. If you’re planning a trip to Silver City, make sure to put the race on your agenda.

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Silver City is a town with its roots firmly planted in the 1960s. Many people who came to Silver City were looking to get off the grid but still have some culture at arm’s length. There are museums, cafes, boutiques carrying New Mexico’s famous silver and turquoise, and most surprising for a town of this size – consistently great food.

Our first meal of our visit was at local hangout Diane’s. Strung with lights and framed with cheery vintage curtains, Diane’s is as comfortable as a worn leather couch. We arrived after 1PM, greeted by an all-day breakfast menu full of bacon, eggs and Hatch chiles.

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“Where are you folks coming from?” our waiter Kevin asked.

With a half ton of photography gear in tow, it was clear that we weren’t locals.

We answered Santa Fe and then asked where exactly we were in New Mexico. More explicitly, in which direction had we just traveled?

That’s like driving from New York City to northern Maine, hauling your road-weary bodies over to the local luncheonette, ordering a Bloody Mary and then asking whether you’d just driven north or south.

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38 comments

Travel

Santa Fe, New Mexico

Monday, May 18, 2015

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4 days and 600 miles through New Mexico in a cherry red VW Beetle. From Santa Fe, the highest state capital in the United States, to the untouched wilderness of the Gila National Forest…all the way down to Silver City, first stop on the Continental Divide trail. A night in Truth or Consequences with a dip in the natural hot springs, an afternoon at Ladder Ranch and at long last, a return trip to Albuquerque for a well-earned Cinco de Mayo party. I brought my Mum along for the ride; a pre-Mother’s day trip that we’ll never forget. Today, and in two more upcoming posts, I’ll share our stories from the road.

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We were invited to visit New Mexico as part of a food tour that brought me together with some of my peers in the food blogging world. I asked my Mum if she’d like to join and she answered a resounding “yes!” before we knew the itinerary; before we learned, for instance, that we’d be trekking through mountains and valleys and desert and rain in a car that could fit inside of our family’s SUV.

Living in New York City means that I’m not much of a driver, and when I do drive to our lake house, it’s an hour door-to-door; nothing like the open road in New Mexico where mirages form and tumbleweeds blow.

This trip – never mind the meals we’d tackle, booze we’d guzzle, hills we’d hike, and art we’d view – would be a navigational feat in and of itself.

But we had the right ingredients: enthusiasm and a sense of adventure.

We drove long hours, passing a changing landscape, each view more beautiful than the last. We met restauranteurs, chefs, winemakers, distillers, tour guides, biochemists, and hoteliers. We learned their stories and marveled at the deeply-rooted history that so defines this region.

Two kinds of people live in New Mexico – those who are born there, and those who visit and never leave.

The state is filled with transplants – people who came in search of solitude, beauty, inspiration, and the great outdoors. Others came by accident but never looked back.

“Don’t ask me how I ended up here”, we often heard.

“It’s a long story.”

There were tales of ex-lovers, work assignments, destiny and fate.

“I feel more at home here than I did in Florida…Arizona…Texas…Ohio.”

It’s easy to understand – after just four days, I felt a similar pull. The food was surprisingly sophisticated – from the nuanced molé that we ate at the Santa Fe School of Cooking, to the bubbling dry ice-encased custard at our hotel, The Sierra Grande, in Truth or Consequences. The locals were salt of the earth – generous with their time, eager to answer questions, passionate about their state.

There are too many images to include in one post, so over the course of the next few weeks I’ll share more images from our adventure.

We started out at the Albuquerque International airport after picking up our Beetle. My Mum’s confidence in my driving skills dropped sharply after I fumbled with the keys, lost them for several minutes, and needed help unlocking the trunk. All of this happened before I’d placed the key in the ignition. We kept talk to a minimum, both of us sensing that this would be a very. long. trip.

It didn’t help that just off to the south was a fast-approaching wall of rain; mountains and indigo clouds illuminated by the occasional bolt of lightning.

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My mind churned. Both of ours did, guiltily. Our families were safe in their routines; and here we were getting ready to tackle this stormy terrain in something other than a 4-wheel drive off-roading machine.

That is, until a rental attendant pointed out that Santa Fe is due north. We sped out of Albuquerque and one hour later, pulled up to our hotel on a hill: The Lodge at Santa Fe.

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After a brief tour of the hotel, we hopped in a cab and headed to Santa Fe’s historic center: a cluster of blocks brimming with artwork, turquoise jewelry, and green chile everything.

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44 comments

Travel

Grand Cayman with Inspirato + TOMS

Monday, April 20, 2015

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If you were to think about large-scale efforts – mapping the human genome, searching for monster prime numbers, developing the TESLA, you would be wise to add planning a family Caribbean vacation to your list.

There’s the organizing, packing, passport-checking, last-minute snack shopping, the rounding up of coloring books, crayons, headphones, medication, sunscreen and whatever sand-caked plastic shovels that can be found from the last vacation.

Rodney imposed house rules against me asking him to exfoliate my back and apply sunless tanner the night before a trip, so now I leave that job to the professionals. Which of course never gets done. Time, who? what?

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This year I got my act together and scheduled an appointment that I promised I wouldn’t break. I stuck to my guns, shed my clothes in front of a woman whose name sounded like Mary but wasn’t, and stepped into the booth. After a few passes of her spray gun, she declared that I looked “owa-some” and I skipped back home, a burnished shade of bronze.

My kids weren’t impressed. Over the sobs of one child, another demanded to know what happened to my “other skin”. The third was found later, hiding in a closet. This pre-tan effort, I imagine, won’t happen again.

It was the least I could do to get ready for what promised to be the trip of a lifetime.

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When traveling with kids, Rodney and I have always leaned towards big hotels with big pools, big restaurants, and a bigger set of amenities. The kind of place where a kid can race around and find plenty of entertainment.

This year though, we booked our trip through Inspirato. After looking through their list of properties, we found a house that seemed like it would be a great fit for our family: our own pool, an empty beach, ocean-facing bedrooms, and the icing on our Tortuga rum cake….a well-stocked kitchen.

I’m not sure how many times the word “idyllic” was dropped into the conversation during our stay, but I’m pretty certain that were in three-digit territory.

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