Happy places

Monday, October 19, 2015

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“It might make sense if I read my intro first, and then respond to your questions.”

“15 years ago I was diagnosed with cancer…” I continued with a condensed version of the last 15 years: cancer, food, cancer. Life distilled into 200 words or less.

“Now to answer your questions….my writing experience outside the blog is limited. Goals for this class? I need to get back to being me, but I can’t seem to do it on my own. I need help. I need someone to give me an assignment.”

I searched my teacher’s eyes for an acknowledgement of my situation. That at the very least, even if I couldn’t produce a level of work that I would be proud of, she would understand what it meant for me to be there. In this class, sharing my story with a group of strangers. Trying when trying is complicated.

I’d signed up for the class on a whim. A 10-week course on nonfiction writing that would help me communicate my feelings to the outside world. “Outside” meaning anyone who doesn’t live within the four walls of our home. The people – parents, siblings, friends – from whom I’ve slowly distanced myself.

I have a primal urge to be alone right now. Preferably in nature, where the blue sky yawns, the trees don’t pity, and you’re not required to talk about murky things. Heavy things. Things that exhaust. Life, death, fear, uncertainty.

The summer was a challenge. The ongoing recovery from surgery, immunotherapy, colitis, steroids, a white bread diet that would make low-carb disciples weak in the knees.

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“The summer from hell” as my family has dubbed it.

But, I remind Rodney, what if these are still the good days?

Occasional escapes to the lake have been my salvation despite my guilt about leaving the family. My therapist, who runs the Callanish cancer retreat near Vancouver, BC reframed things for me:

“You’re running towards the lake, not from the city. This isn’t a weakness, it’s a strength. You know how to make yourself happy in spite of everything. Keep doing it. This is your medicine too.”

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Family

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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Family

The unpredictable curveball + UPDATE

Tuesday, June 9, 2015

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“I’ll have the wild blueberry please.”

“Your lunch looks so heavy this morning! Did you pack some for me?”

“Sam I forgot to bring your socks again, I’m sorry.”

“I don’t know. I don’t know what it means. I’m scared.”

“It’s likely metastatic.”

Lines from recent conversations. Lines from different moments on different days, all of which brought me to tears.

I debated whether to say anything online. This place is usually filled with happy self-deprecation and a deep love for local food. But when you fall apart ordering a blueberry donut, it’s time to admit that life has thrown you one of its wildly unpredictable curveballs.

I called a friend to tell her the news.

“You should say something.”

Openness is both my strength and my weakness. Anyone with a pair of ears has heard about the times when I’ve burnt my food, failed a test, or had too much to drink.

I admit to my faults, and there are many. But I don’t like to tell stories that aren’t remotely funny. They stay deep, dark and buried until the skies are once again clear. When I can talk about them in the past tense. Make light of the situation.

“Remember the time when I walked to the hospital with a cockroach in my shoe? That was funny.”

Health issues – present tense – are never funny.

Cancer isn’t funny.

Particularly when it shows up 14 years after it went into remission.

Too much has happened since then. A husband. An apartment. A dog. Three beautiful kids. A lake house.

It seems unfair. But what is unfair?

Is it fair when another person gets sick? Your co-worker’s child? Your friend’s mother? Your brother? Your sister?

Cancer is a numbers game. There are things that you can do to better or worsen your odds, but in the end, it strikes randomly, and has nothing to do with fairness. It has everything to do with bad luck.

So you try to be upbeat.

You distract yourself. You work. You take the kids to school and drop them off at tennis.

You listen to the conversations happening around you. “Sophie isn’t being challenged. You’d think that after all of these lessons she’d know how to hold a racquet.”

You try hard to forget the news that you were delivered. That more likely than not, you have stage IV melanoma.

I’ve been writing for two years about what life is like on the other side of cancer. It’s full of healthy food, birthday cakes, love, frustration and joy.

It would be inauthentic for me to disappear into thin air, or to provide vague information. “Checking out with some health issues guys, see you in a few weeks.”

I wanted to finish telling the story about that incredible trip through New Mexico with my Mum.

And now I’m giving myself permission to rest. To focus on my health and spend quality time with my family.

Tomorrow I’m going to the hospital for surgery and I look forward to hearing these words when I wake up: “We removed it, follow-up treatment is…, your prognosis is good.”

There’s no reason to believe that I’ll hear otherwise. My doctors have told me that I’m going to be OK. I believe that I’m going to be OK. After a week that involved tearful phone calls, depression and isolation, a strange thing happened. I started to take pleasure in old routines – making myself a nice meal, taking the kids to the museum, reading a book at night. I wish that I could say that I willed myself to this place, but it happened organically. And although I’m anticipating bumps in the road ahead, I know that I have the mental strength to get myself through this challenge.

I promise to update this page as soon as I have my energy back. And I look forward to returning with great news. There is so much good coming our way – another summer at the lake, boxes of CSA vegetables from the Hudson Valley, a recently-planted herb garden that’s already in full bloom. Summer camp for the kids, swim team, trips to the neighboring blueberry farm.

Life is happening around every corner.

Whatever is thrown my way, I’m ready for it.

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UPDATE

It’s been a week since my surgery and recovery, although slow, is going well. As much as we’d hoped that it wasn’t cancer, here we are, stage IV melanoma. Treatment is still undecided, but we’ll learn more in the coming weeks.

I’m in good spirits though. Food has once again become my beacon. It’s my comfort blanket, my shield. There’s “healthy eating”, the kind of eating that I’ve embraced for the past 14 years: joyful eating, everything from scratch, wholesome ingredients, mountains of vegetables, nothing processed.

And then we have its reclusive, tough, and oh-so empowering cousin: “HEALTHY EATING” – no white flour, no sugar, no red meat, no dairy, no regrets.

I don’t look at my list of antiangiogenic foods and think about restrictions. I look at this list and see 150+ ways to beat cancer.

Hippocrates once said “Let food be thy medicine and medicine be thy food.”

So I’m gearing up for battle; building my arsenal with weapons such as blackberries, ginger, whole grains and leafy greens.

If you’d like to see the TED talk that inspired this dietary shift, you can find the link here.

For now, you can picture me exactly where I am most days: on the couch, Lauren’s “High School Musical” blanket keeping me warm; Jackson on his back by my side, paws in the air; bowl of kale salad in my lap; ginger tea at arm’s length; kids in costume, making a mess, performing a show…surrounding myself with every inspirational anti-cancer book written since the beginning of time.

There are worse places to be in life.

See you guys back here soon.

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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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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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