We recently had a company called Magic Hour provide a free photo shoot for our family. They do this work pro bono for people with cancer, and we are so grateful. The photographer who worked with us, Melissa of Icarian Photography, was wonderful. She made us feel instantly at ease. I have been in the mind of legacy lately, and what could be left for my daughter and husband, and so it was such a relief and gift to have this offered.
Here are a few shots:
I like to read. A lot. On days when fatigue wears me down, I rest here. Sometimes I close my eyes and the same soft breeze that brushes the Golden Gate wafts through those curtains. I remember the outside world, and I remember the long wide ocean that moves not far from me.
Our messy garden. The cherry tomatoes have gone bonkers. The colors and bees and flowers cheer me up. Sometimes the best living is not organized. In disarray you might find your heart.
I’ve always wanted to hike the Lake Tahoe mountain range. It’s been a dream of mine to hike the Tahoe Rim Trail. According to the link, it’s considered one of the most scenic hikes in the world, and I can see why. Starting from the Tahoe Meadows Trailhead, the valley views are incredible.
Altitude: 8, 740 feet.
I went alone. I was a little nervous – not about safety, but more about my health. I’ve had a large number of lymph nodes removed due to cancer metastases, and one of the side effects of this (not mentioned in the “happy pink” and “you’re a survivor” positivity ticker tape) is the lifelong risk of permanent arm swelling, cellulitis, risk of cuts, bites, and possibly permanent manual massage and pumping and physical therapy that comes with lymphedema. After my breast cancer surgery, the list of “things to avoid to prevent lymphedema” included: high altitudes, vigorous exercise, pet scratches, dehydration, weight lifting, vigorous and regular movement of the right arm, saunas and hot tubs, and so on. The list was a devastating litany of losses.
The physical therapist told me, “You might want to think of getting rid of your cat. Also, avoid air travel.” More than the cancer, I felt like my life had been taken away. How much more of my body would be carved, how much more to lose? I went home and wept. I hated it all – the cancer, the lost tissue, the loss of activities I loved. Life.
But, as we must do to continue living, I regrouped. Such gratitude to my support group, to include online ladies, a hallelujah chorus of friends, family, writing group, community, my husband and daughter and wonderful colleagues. This pool of support buoyed me, kept me grounded, prompted (and prompts) me to get back out and live.
And so this hike, 6 miles in high thin air, was more than walking. It was a kind of milestone, a kind of fuck you to the limitations of this disease. It’s not the 10 miler I’d hoped, or the full 15-day outback trek I’d dreamed of, but it’s a start. A small victory.
The best, sauciest, crab cakes EVER. With wine and a sweet lake breeze.
I’m sick of brussels sprouts, cabbage, broccoli, watercress, and other vegetables like artichokes and garlic and peppers and beets. I’m tired of walking the Green Mile for produce and minding each health-conscious bite.
When you are not a cancer patient (and I am impatient, wanting this to be over, which perhaps it never will be), food is an ally, a benevolent companion. You buy and eat, and cook and eat, in a set of light, repeated gestures that do not cause much pause.
Cancer shifts the scales. Food becomes more fraught. It becomes more heavily weighted with meaning, assessed on a scale of its antioxidant values and not of taste or flavor. I have found myself looking up food names and “cancer” many times during the course of a day in order to reassure myself that my meal is fighting free radicals. Searching for “maitake mushroom” and “cancer,” for example, brings up a list of products, research, and formidably-medical sounding articles that paves the way for each reassuring bite. I have felt, at times, a zealous worshipper at the secular altar called “health.” Too much. A person can become obsessive or worse, self-righteous.
Certain foods can become “good.” Some “bad.” And these judgements can extend to ourselves. You are a “good eater.” (Healthy, weight-conscious, working hard to resist with produce.) You are a “bad eater.” (Steak, chips, soda, sugar. Meh. Pass the beer.)
To. Hell. With. That.
I am starting a new diet called the Ice Cream and F&*k It Diet.
Because, sisters and brothers, you’ve lost enough. You’ve worried enough. You’ve googled and read enough. Stayed up late through the night, scrolled through your phone, lost a body part or tissue, reeled through waves of nausea, stayed in while your friends played, lost a sure future, and wondered-what-you-did-to-cause-it enough. You know what? Here’s the answer: We don’t know. People who jog and do yoga and eat vegan get cancer. People who smoke and drink live long lives. This isn’t an excuse to chuck all effort, but it’s a way to give yourself a break.
In that spirit, which is the spirit of We Don’t Know, So Go Ahead and Live, here are the essential principles of the Ice Cream and F*%k it Diet:
There are no essential principles.
Eat what you want.
Cruciferous (which means, by the way, “of the cross,” as in crucifix, a cross to bear) vegetables are great, but they will not save you.
We will all die. (Don’t say this at parties.)
Is there syrup on it? Frosting? Fat or sugar? You know what to do.
I know I know– “not every day.” Of course.
Popcorn with butter first, then the seats. Bonus if you scarf it before the trailers end.
My husband, daughter and I spent a few days at the coast just getting quiet, reading, drinking coffee, walking and listening. The landscape, it is not especially glamorous or light-filled, but we like it that way. I like the quiet serenity of it.
The subtlety of the colors and layers reminds me to look more deeply.
Not everything has to be bright, or vivid. Not everything needs to move.
It’s almost always meant well. The asker is curious: you have, after all, been diagnosed with cancer, and you haven’t seen each other in awhile. The asker wants an update. They want to know what’s going on. And so, there’s the initial hello, then the pause:
“How are you? How are you doing?”
Sometimes it’s a text message. Sometimes an email.
“How are you doing?”
And you, bearer of the proliferating morass, standing politely with drink in hand, are expected to answer. You have perhaps just had blood drawn, perhaps your tumor markers are higher (indicating growth), your blood counts are off; or you have finished your most recent infusion, grasp fingers that sting with neuropathy, feel too tired some days to even get mail, are bald, breastless, riddled with grief, adrift at work, scattering bills and papers, forgetful, with eyes watering and home disheveled, lie in bed for hours, just brushing your teeth was a climb to Kilimanjaro; take-out dinner boxes litter the countertops, the diarrhea and nausea fluctuate in a horrid yin/yang, and perhaps your gums bleed, toenails have fallen off —
how are you how are you
And in the movie version, the dream sequence. Flashbacks to a past life. In “The Handmaid’s Tale,” Offred remembers her daughter at the beach. I think of running, my long hair with the car windows down, drinking Coke, summer drives with my little girl, hikes with my husband, raucous laughter over wine, faded glass over a country road somewhere, faded, fading.
how are you
Do you want to say, “Fine”? Do you want to say, “Hanging in?” I do, I do. I want to give a glib answer. I don’t want to remember, don’t want to talk. I am more than this disease, am more than an update, and cannot answer to this kind, albeit temporary concern. It is kinder sometimes to not ask, kinder perhaps to think what the question means.
I have erred in this, have erred in the asking. But now, on the receiving side, I find myself sometimes unwilling to reply.
Because the question can trigger remembering. The question can trigger the kind of response that is interrupted – my friend’s mom had breast cancer, too!- with an anecdote that has no bearing, does not help. Or suddenly help is offered, as is unwanted advice about “alternative” treatments. Pineapple cures. Coffee enemas. Or judgement. Or glazed eyes, a disinterest in the reply.
Better, maybe, to say “How’s it going?” or “How about those Dodgers?” Another way: “I’m here for you, here if you ever want to talk.” Or even, “I don’t know what to say, but I’m here.”
We are all stumbling with how to ask, how to answer. Compassion is a given.
Yet sometimes it’s better not to ask. Sometimes coffee or tea is best. Sometimes a quick “I’m at the store – what do you need?” is manna from heaven. Or sometimes silence and companionship – your presence – are gifts enough.
But I want to add, feel it’s important to add: I always take it with kindness, as it is meant. The intent at the heart of the question is always welcome.
How about you? How do you deal with “How are you?”
“Who can become lost in a narrative,
if all he can think of is the end?”
– Mark Doty, “Lament-Heaven”
And so, with cancer comes the question: What is the new narrative of my life?
How long do I have left?
What is my treatment plan?
Logistics: Do I continue to save? Plan a world trip? Get rid of my old stuff?
Planning, the economic and spiritual foundation of modern American self-efficacy, is the Harley-Cancer-Davidson motorcycle driver that breaks you off, sidecar sidekick, and leaves you in the little rig by the side of the road while he takes off down the two-lane highway of certainty. Putt putt, sputter. Stop.
And here you are, ditched and detached in the Death Valley of all deserts, left to contemplate your options. It’s quiet all right. And there’s no driver for miles. What to do, what to do?
I struggle with this. If we continue the metaphor, with Death Valley and the unmoored, detached passenger, bewildered and shocked at the side of the road, I’m still sitting. Two years later and I’m still sitting, still scratching my head, looking at the map and trying to figure out how to get back home. Do you know what I mean?
It’s kind of tragic. It’s also, at times, patently absurd. And funny. I mean: no hair! And what’s a lopsided gal to do when running? Plenty of room to contemplate.
Many other survivors and friends have come past, offered advice, suggested lovely and some-odd things, and pointed out alternate routes. But I can’t go back. I can’t go back to the home of the Old Body, the Old Life. The new is here. And I’m still working out how to navigate life, work, the process of living with chronic disease. I want to rush it. I want to “make it work,” learn from it, deal, manage, fix – do all the productivity-oriented activities my previous and old life would have deemed necessary in order to overcome any personal obstacle. And in focusing on the corrections and fixes, I wonder if I’m losing some kind of view.
That is, just being, living, fully taking in the transition. The road. The sidecar mishap-tragedy that, like Emily Dickinson, tells it slant. Because even in this, there is a narrative. There is story, there is process, there is some nugget of love and living that wants to find a way.
Here now, it seems to tell me. Look at your body, the earth, even the rocks at the edges. Sit awhile longer and take it all in.
The CT scan showed that the tumor is shrinking. It’s gone down by about 1 cm.
This should be good news, and it is, but the rise of the celebratory music is dampered by the ongoing knowledge of cancer’s continued presence. I am talking about a lack of trust, a lack of belief in the body’s full capabilities. This lack is not pessimism, but rather the realization that this body can and has betrayed me. Faith in a long future is a vertebrae that’s been removed. One slight hunch is now always impacting movement, tilting each tentative step. It’s a little harder to look up.
“Continue the treatment until it shrinks further.” Then surgery, then recovery.
My old life feels like a harbor from which I drift further away each day.
I do not want to sound sad. There is always coffee, or sunlight.
A friend or a flower.
A note or a text message, laughter, friendship, good books, food, family, naps. You, they, these things:
are all the antidote.
are all I need.
And the truth is? We are always pending, are always, like the pendulum,