I Hate Surgical Drains.

Imagine a large, plastic worm that drools liquid constantly. It is shoved through your chest skin and into your armpit, and its stomach sac, attached with a lengthy tube, wanders and slips over your belly like a rogue balloon.

Imagine that this worm’s belly must be drained twice a day. In the lengthy, slow, meandering draw down from your flesh into its rotund collections, there are flesh bits that look like fingers, raw chicken, fetuses.

Sleep on your back. Do not raise your arm.

Hourly you must shove this worm’s unruly flailings back into your pants.

Imagine that the reddish-orange fluid that gathers in the pool of this squirming hellion’s plastic gut is not blood. It is liquid detritus to be removed from the flood site. At times the colors of it evoke a sunset, which is pleasant enough except for the pus.

Getting dressed:  1. Place your shirt overhead first. 2. Let the garment rest on your shoulders for a few seconds. The tube must settle. 3. Slowly, so as not to shift your inwardly slithering medical reptile “buddy,” raise your arm and slide it gently through the sleeve. 4. Wait 10 seconds. 5. Repeat with the other arm. 6. Breathe a sigh of relief: the drain stayed.

In considering architectural innovations, ponder the labyrinth. Who is the monster? Who is the girl?

Drain, sucker.

Each flesh bit that leaves the body may be a part of the disease. One might celebrate. Might.

Imagine removing your clothes. The shower water rushes. The wildly gesticulating worm of tubular regurgitations must be subdued and restrained for the cleansing, and so, like a madhouse warden, you tape and tape and tape it not to a chair, but to your skin. Supervise its movement. There will be no violence today.

Absolution? Only with its removal. Call the doctor.

Call again.

Oh parasite, oh lollygagging and lengthy leftover lap lap lapping and long-remaining lily of the surreal translucent and post-surgical liquid stem linking loss to luck, little to less, longing to love and back again, you’re a lazy lurid river, a milliliter lover, a sewage leaver, convenience killer, a bendable lamentable wily water lure, a makes-it-hard-to-hold my daughter and my husband lank and lowbred dirty and late single-string lyre.

I hate you.

 

 

 

 

Magic Hour

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:

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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.

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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.

 

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And here, with my daughter, is mine.

Love out.

 

The Ice Cream and F*%k it Diet.

I’ve had it with cruciferous vegetables.

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.

close up photography of cat
One more cup of green tea and “kitty” will puke.

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.

cat paws in shallow focus photography
These are actual paws.

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.)

Well.

To. Hell. With. That.

I am starting a new diet called the Ice Cream and F&*k It Diet.

person holding ice cream with cone
Hold that mother high.

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:

  1. There are no essential principles.
  2. Eat what you want.
  3. 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.
  4. Because:
  5. We will all die. (Don’t say this at parties.)
  6. Is there syrup on it? Frosting? Fat or sugar? You know what to do.
  7. I know I know– “not every day.” Of course.
  8. Popcorn with butter first, then the seats. Bonus if you scarf it before the trailers end.
  9. I am so tired of caution.
  10. What is the food for danger? The Carolina Reaper? The Naga Viper Pepper?
  11. Read Derek Walcott’s poem.

And do what he says, and live. With culinary and sensual abandon, in whatever forms those take.

I wish you a great feast.

 

 

 

 

Rainer Maria Rilke Teaches Me About Cancer

I’m reading a superb biography called “A Ringing Glass: The Life of Rainer Maria Rilke,” by Donald Prater and from it I am gathering material and ideas for how to live with breast cancer.

Sometimes poetry and literature are the best forms of bibliotherapy. Bear with me.

For starters, here’s the second stanza from one of Rilke’s poems from his “Sonnets to Orpheus” (II, 13) series:

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.”

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Photo by Johannes Plenio on Pexels.com

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,

o joyous day

and forever destroy the number.

Love out.

Results, Pending

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.

Then wait.

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.

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A friend or a flower.

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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,

asway.

 

 

 

I Remember.

Flowers on the windowsill. Such pleasure in their colors and blooms.

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Yesterday a haze of exhaustion. Wandering. Up and down stairs.

Water.

My mind a sluice with this thought, that. No order.

Post-infusion low counts and a ton called not going on my belly. Aka: sit down. Aka: not today.

Taxotere. Cold slide into my veins and killing the quick cells. Do your work.

How the sun, beautiful wanderer, lights up all the kitchen jars and vases like a song through glass. I can almost hear it.

 

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Oh, warmth. Oh, living.

And arrival.  Here now.

What else was it that I wanted? What else did I ever ask for?