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.
These are just some of the questions that many of us, myself included, consider when dealing with a cancer diagnosis. If you were diagnosed before retirement, questions about work, your work life, finances and benefits may weigh heavily. This link to the American Cancer Society answers some of those questions, but the bottom line is this: It’s personal. And there’s no one right way to go.
I’ve been incredibly fortunate. Lottery, pot of gold, best-ever fortunate. And I’m saying this here not to boast, but to hopefully help those of you whose co-workers might not be responsive, whose superiors might not understand, or whose work conditions might not support your needs. Let me tell you why I’ve been so lucky, and grateful:
Supportive, sisterhood-level colleagues. For confidentiality, I won’t describe the details of my job, but my coworkers are incredibly supportive. Sometimes this means checking in, sometimes it means silence, but it is always surrounded by kindness. I wish I could send them all to Hawaii with mai tais and a warm quiet sandy beach. They are, each to each, a hallelujah chorus. I love them.
Supportive boss. My higher-ups have pretty much said, ”We’ll have a job for you whenever you come back.” I can’t tell you how much this has meant. Even though my prognosis is currently in flux and unknown, to know that this one certainty exists acts as one small light in the darkness.
Work I love. I find it challenging, engaging, meaningful, and it stretches my capabilities as a human being. To be in an environment where we all are learning and practicing and supporting each others’ growth is a privilege, and one that I hope to return to.
Practices that have helped my employment situation:
Transparency. But, caveat emptor: your diagnosis impacts coworkers, and it’s important to be judicious and mindful in how it’s communicated. Others may be struggling with ill loved ones, or in grief, or not wanting to deal – and that is to be respected. Everyone is in a different place. I have deep trust in my coworkers and so communication and transparency were not an issue, but your work place may be different. If your situation is hostile or not supportive, I am truly sorry. This might be the time to look at your legal rights, or call your local American Cancer Society for guidance.
Assistance with disability and other employment paperwork. Your benefits and/or HR department should direct you, and sometimes other coworkers have excellent insights into sick leave benefits, disability, and/or other options.
Flexibility. The ability to return to work part time after my first treatment cycle ended was incredibly helpful. We know that fatigue, depression, anxiety, and post-treatment pain can come suddenly, and that our new, post-treatment bodies need time to heal. Part-time work can act as a bridge to help you return to full-time employment.
Communication. Letting your superiors know what’s going on and providing even tentative timelines is important. Others may be carrying a larger workload in your stead, and your coworkers need to plan and organize their work lives. Check in. Keep your employer in the loop.
Work is personal, and carries so much weight. It impacts how we live and our finances. And with a cancer diagnosis, I think it symbolizes our ability to return back to the river of normal life. In that sense, work is powerful. It is a step back into the continuum of living.
I wish you, or your coworkers, or your spouse or relative, a supportive and meaningful path back to work.
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.
I am recovering from my fourth cycle of Xeloda and Taxotere, and I’d like to talk about how things are going. This treatment plan is for a recurrence, a 5 cm tumor that showed up during my annual MRI in March of this year. The goal is to shrink this tumor in order to make it operable, and therefore remove it.
I receive Taxotere every three weeks, and, on the same day as the infusion, begin a two-week cycle of 4000 mg of Xeloda. Four pills in the morning, four at night.
As of today my eyes water constantly. My nose is an incessantly dripping faucet, causing me to wipe, drip, wipe, drip, and because of this I’ve become wary of cooking and paperwork. Restless legs make it difficult to fall asleep, leading to a cycle of fatigue and sleeping until 9 or 10 AM that has thrown my summer for a loop.
So far, I feel fortunate that I haven’t experienced Hand/Foot Syndrome, a common and difficult side effect that causes peeling, itching, and can cause the permanent removal of fingerprints. And so far, I have no neuropathy. Knock wood.
But the fatigue. I’m writing this to share with others in treatment, other survivors – you will know what I mean when I talk about the crash, the far, low tide that comes with waking and feeling as if some deep core of bones and blood has been removed, and all that remains is an easily-toppled monument of skin. You become a heap of unmoving muscle, resolved only to rest. Rest and sleep are what the body orders. Mail opening or reading an email becomes an orbit of language that revolves but does not land – I can’t wrap my head around any cognitively demanding tasks after infusions. Give me TV, give me easy magazines. Youtube cat videos and naps.
I find myself cueing up bingeworthy shows: old episodes of The Office, Handmaid’s Tale, Sherlock Holmes, and soon the latest Orange is the New Black. Some of these I watch at night when my husband and daughter sleep. Others I fall asleep to. Dr. Phil is another favorite. After all my losses, I can at least assure myself that I am not duped by internet Don Juans, or that no one in my family has been kidnapped by a cult.
The fatigue, it comes and goes. It is unpredictable and when it comes it must be honored. This is one of the many lessons of cancer: Listen to your body. It is its own untameable animal that requires tending, and if you listen it will lead you well.
How do you deal with fatigue? What are some ways you pass the time when your body says Stay?
Be always dead in Eurydice – climb, with more singing,
climb with praising, back to the pure relation.
Here, in the failing place, in the exhausted realm,
be a ringing glass that shatters as it rings.
Background (scroll down to skip): Rilke wrote this entire sonnet – the entire, magnificent series of sonnets – to Orpheus, the mythical Greek lyre player who has gone to the underworld (Hades) to get his beloved Eurydice back. On Orpheus’ and Eurydice’s wedding day, Eurydice was bit by a snake and died suddenly. Orpheus was heartbroken, and was given the chance to earn her return to life. In an agreement with both Hades and Persephone, the god and queen of the Underworld, Orpheus leads Eurydice back through the dark, arteried maze of death, but must promise not to look back, must promise to trust that Eurydice follows behind him as he makes his way back to Earth. Sadly, he fails. His doubts bedevil him, and just before re-entering the light of terra firma, he turns and looks, but his last vision is of her fading back into darkness. It is a tragedy that tears Orpheus apart with grief. Orpheus’ lyre remains a constellation in the sky called “Lyra.”
What could this mean?
We, cancer patients and survivors, are in “the exhausted realm.” We’re not dead – of course not – but a part of us has died: our illusion of ongoing health, an old life that has changed, a loss of innocence, a sense of ongoingness. I feel that to heal completely, this grief must be felt, acknowledged, allowed to appear fully in the body and mind, and then let go.
It is this feeling and letting go that is the challenge, no? To trust in it. Thankfully we are not bound to an oath like Orpheus, but faith in a new life, a new outcome, or some future hope comes with the painful price of a broken past. It is a pendulum of dark and light. An offering of night, an opening called “Day.” Rilke, in his wisdom, did not recommend an illumination or mirror; rather his word is a gift of transparency, one to break: “glass.”
And in breaking, in shattering, he tells me, be the full-throated voice of grief singing.
He ends the poem like this:
Be – and know at that time the state of non-being,
the infinite ground of our deepest vibration,
so that you may wholly complete it this one time.
In both the used-up, and the hollow and dumb
recourse of all nature, the un-tellable sum,
joyfully count yourself one, and destroy the number.
I feel myself wanting to be in the process of climbing, like Orpheus, back to the “pure relation” of family, daily life without the dark blanket of mortality clouding it. I want to sing praise songs to my doctors, medicine, coffee. I want, like Rilke tells Orpheus, to be “the infinite ground of our deepest vibration” in order to complete the full circuit of grief and healing.
And to count myself, and you, sister or brother survivor, “one” and to wipe out all comparisons, all statistics, all outcomes, percentages, prognoses, doses, stages and grades, milligrams and pounds, cycles, infusions, lab work, blood counts, tumor markers, weights, scans, needles,
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?”