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 feel 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.
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.
“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.
“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.”
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.
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.
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.
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.
“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.
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.
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.