New_beginnings_2_B

There was something mystical about 2015. It was a year of personal growth and discovery, but a year of hardship. As my oncology nurse likes to say, “everyone needs a benchmark year”, a year so challenging that no matter what’s thrown your way, you’ll know that you have the strength to overcome.

And so that was my 2015 – a benchmark. I’ve written about my struggles with cancer. But there were other trying moments too; so many that I decided to keep them to myself. At best I feared that in telling them, the stories might perceived as gory and unnecessary; at worst they’d sound like the ramblings of a woman clutched in the grip of Munchausen Syndrome.

I tell them now to memorialize. Soon they’ll be hidden away in the blog’s archives, accessible by a few basic keywords. But I’ll know where to find them, and I’m sure that I’ll be reading them down the road when I need a reminder of where I’ve been. We’re a tough bunch and I see that in retrospect. Amidst each hurdle, we still made room for laughter. Just ask “Grease Witherspoon”, my alter ego, the woman with the oily skin and matted hair who cared less about showering and more about the simple act of getting through each new day.

At the outset, I didn’t intend to hijack the blog’s usual content and replace it with a year of illness talk. But part of having a personal blog – food or otherwise – involves having to own up to life’s struggles. Not the minutia, but the bigger issues, the ones that impact your life in a meaningful way.

We all have good years and bad years. I wanted to paint a picture of emotions that aren’t always discussed: grief, fear, anxiety, isolation. In the process of talking about these difficult subjects, I’ve lost some readers. Not everyone wants to hear about cancer when they’re looking for recipe inspiration. But I was proud to write these posts. I didn’t intend to be so explicit, but the words kept coming, and in honoring them, it felt good to be vulnerable. As my favorite sociologist Brené Brown says, vulnerability plants the seed of true connection.

I’d be lying if I said that publishing these last few posts wasn’t hard. Part of me cringed when I thought about people reading about my intimate and unfiltered moments over their morning cup of coffee. But life isn’t about achieving perfection; it’s about accepting that our roads will travel from sun-strewn peaks to darkened valleys. The internet loves to celebrate the climb, but there’s a place for the other accounts too.

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And that was my 2015. A valley so dark that I could barely see the sunlight from above. It filtered through the trees on occasion, but, almost as if I’d been blindfolded, I’d lost my ability to navigate. In June as many of you know, I was diagnosed with stage IV melanoma and underwent lung surgery and six months of treatment. Nothing was immune – my ability to breathe comfortably, eat, and sleep. My mental health took as nosedive as I struggled with anxiety and depression, fearing the most likely outcome: that my cancer would come back. And it did for a time, spreading to my spine where it stayed for several months and then disappeared as quietly as it came.

During this time, other challenges presented themselves.

In late June, a mass was found on one of my ovaries. When my CA-125 tumor marker came back looking like one of Malcolm Gladwell’s Outliers, my doctor told me that we we were dealing with ovarian cancer or late stage endometriosis. I could barely function post-lung surgery and had to sort through the logistics of how I would handle two types of cancer at once. I have a tendency to race online and figure things out for myself and spent the next few weeks jumping down Internet rabbit holes from Teal ribbon campaigns to sites like the HysterSisters and OvarianCancer.org. “Can you even have two cancers at once?” I asked. According to Google you can. By mid-July I was cleared of both diseases.

August was no easier. Lauren came to me with an unusual problem: she’d found lumps in her neck. I felt the base of her skull and my heart sank when my fingers moved over the chains of hard and swollen lymph nodes. She’d had no fever, no illness, no pain. It’s one thing to worry about your own health, but it’s quite another to face the possibility that your child might be seriously ill. After a series of bloodwork panels, ultrasounds, and X-rays, Rodney and I found ourselves leading our daughter past a set of bald children on the second floor of the Hassenfeld Children’s Center for Cancer & Blood disorders. The doctors reviewed her files, a nurse took her into another room, and we sat down to have the discussion that every parent dreads: “it’s likely lymphoma, we’re looking at six months of chemo, maybe more”. She had surgery the following week.

A full week after her surgery, we got the results. Against the odds of her presenting symptoms, the biopsies had, for the second time this summer, ruled out cancer. It wasn’t until late October though, with swollen nodes that refused to heal, that we got our final diagnosis – an uncommon but benign condition, dermatopathic lymphadenopathy. Which, to absolve the doctors from the raging and undue stress that we endured, looks exactly like lymphoma.

I was winded. I’d been dealing with treatment-induced colitis for weeks, and the stress from the summer had been enormous. My yoga teacher once told me that injuries are common when you’re not rested – “listen to your body” she said, if you hurt yourself, you needed the break.

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I’ve been on retreat.

I won’t get into the details of why, when, or how I ended up in this sacred place called “Callanish”, deep in the mountains of British Columbia. But I will say that, although I don’t look for signs in my life, like a cloud shaped like “The Giving Tree”, there was some unknown force that pulled me there.

I spent a week with a group of women living with breast cancer, in most cases metastatic, some of them young, like me, with elementary school-aged kids at home. We explored a range of difficult subjects – identity, love, isolation, and fear. 

The experience was beautiful and painful, a re-birth in many ways. Only through great physical exertion do we bring forth our children into the world, and as such, I had to pant and sweat and whack at the underbrush to clear a path for this baby-soft new me. A “me” who doesn’t want to shut herself off from the world. A “me” who no longer dreads making plans for coffee with a friend. Lets her text messages pile up. Doesn’t respond to email. Can’t mention her kids in her blog posts because it’s just too painful to go there.

I’ve had many happy moments over the past few months. The kids’ nightly tuck-ins and discussions about their day, long walks along the Hudson with Jackson, whose quiet and loving company I’ve come to appreciate more than ever. 

As much support as I’ve gotten for the honesty in my recent posts, the fact remains: I am scared. With data at my back that suggests that I won’t be here in five years, I’ve had many hard days.

I’m not playing red or black at Roulette. In fact, those odds would thrill me. Without my consent, the universe has put all of my chips on a single number, and as the wheel spins, I am powerless to control where that tiny ball will jump, skip, and ultimately land. I know that eating well, meditating, and all of my new-aged “integrative” habits will serve me well. But even when you do everything that is required to heal yourself….even then… the odds will terrify.

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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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still_here_0

“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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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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