My Relationship to Food #2

I love food.

I love fresh, homemade waffles, coffee, shrimp scampi, big piles of fresh greens with a light, tart dressing, peaches on the cusp of leaking, sushi, garlic bread, creme brulee.

I love a hearty burrito, melted cheddar, and the fresh combo of strawberries and cream.

cocktail drink glass strawberry
In lieu of champagne, which I currently cannot have. Not a bad swap.

Before cancer, I ate healthy foods, mostly, but I did not worry as much. Before the cancer diagnosis, eating carried less weight, less urgency.

Not anymore. For the past two years, it’s been a pretty strict regimen of cruciferous (and other) veggies, beans, fruits, eggs/fish, occasional bread and/or meat. I’ve limited sugar. I’ve sipped green and graviola teas with regularity, and taken a host of supplements: Turkey Tail, turmeric/black pepper, Vitamin D, aspirin, etc. I’ve exercised 5 hours a week, sometimes more, and I’ve kept my BMI low. All in the name of preventing a recurrence.

Which happened anyway. And while this local tumor continues to shrink, thank you Taxotere and Xeloda, I have begun to ease up on my food restrictions. I feel ambivalent about this. For example, instead of my usual morning  Amla powder smoothie (with berries, sprouts, ginger, greens), this morning I ate a waffle with jam. Carbs and sugar. Another: Yesterday was my daughter’s birthday, and I ate an ice cream sundae (bubble gum ice cream and caramel sauce). It was heaven! Then, like a culinary schizophrenic, I went home and had a brussel sprout/kale salad with a small serving of salmon. This is turning into a pattern of inconsistency.

Part of me thinks: What the hell. Cancer has taken so much already. Must I give up favored foods? Another part: Keep the discipline, keep the habits. You never know if it’ll be the “nudge” that stamps out the tumor for good. It’s a pendulum of “good eating” and “bad eating,” mitigated and slowed by the fatigue of trying so hard.

adorable animal animal world cat
I do not want to go grocery shopping.

Because it does take effort. Eating a healthier diet requires more intention and thought into food purchases, food preparation, and food keeping. To add this to the cognitive and physical load of a person with cancer is asking a great deal. It means added tasks, money, time and energy devoted to health. This is not terrible, can even be joyful, but it is more.

How do you manage eating, food, cooking, shopping, and staying healthy?

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.”

glass ball on white surface
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.

“How are you?”

ask blackboard chalk board chalkboard
tPhoto by Pixabay on Pexels.com

 

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.

Why?

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?

And others:

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.

arizona asphalt beautiful blue sky
Photo by Nextvoyage on Pexels.com

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.

No more need to rush. For now, no need for fear.

 

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.

IMG_8878

 

A friend or a flower.

IMG_8877

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.

 

 

 

You Are a Charged, Lit Bulb: Waiting for the SCAN

It’s coming.

bright bulb close up conceptual
Photo by Pixabay on Pexels.com

It’s the CT, PET, or MRI. The acronyms don’t matter as much as the fear, because what if? What if there’s a blip, a lighting up, a growth, a recurrence, an expansion, a concern? And what if there isn’t? What then?

(“Clear,” calls the Emergency Medical Technician before shocking the heart.)

Cancer is an abusive lover. I’ve learned not to celebrate too much when things go well, because the trust in a long-term, healthy future is gone. Even if the scans show nothing, trust in the world has failed. The sure sense in an ongoing future has failed. Planning a year or five years ahead with certainty? Failed. This “lover” – cancer – is always lurking, its revenge always a possibility. It hides its power, it lures you into comfort. It charms you back into living. It leads you back into your body, the ease of each day’s choreographies: movements through the front door, work, friends, gestures here and there, family, food.

Oh hello, hair, hello travel plans — let us begin again. Let us pretend with the ease of the healthy-bodied living that we are ever ongoing, that we will not, in our careful financial records and remodeling plans, ever perish. Tahiti? Paris? A mani-pedi scheduled for Friday. Oh, and the workout.

Scans jolt me out of this trance. There is the word we are all trying so hard to avoid: death. Dying. A finite closure, that the body and mind and this life as we know it will end. Will.

And so, I have a scan today. A CT scan to see if this current treatment of Xeloda and Taxotere are working to shrink this recurrence. If the tumor has shrunk, we continue, proceed with later surgery, and keep cancer at bay for awhile longer. I’ll take it.

If it’s not working, then we don’t know. Clinical trials, hope for the best.

Filaments, fibers, fears.

What is Triple Negative Breast Cancer? Hint: Not a Lottery Win.

It’s also not as terrible as the Internet searches would have you believe. Here’s the lowdown:

  1. It’s a breast cancer that has no hormone receptors, and therefore currently no targeted treatment.
  2. It’s a rarer type – 15-20% of breast cancers are triple negative.
  3. It’s more common in African-American and Latina women. Diagnosis and treatment equity are a real need.
  4. It has a “worse prognosis,” but if you are a newly diagnosed TNBC (triple negative breast cancer) sister reading this, know that it is a hotbed of research, and new treatments are coming out all the time. Old statistics are not your friend. There is hope.
  5. It is aggressive and tends to spread/grow more quickly than the other types.
  6. It has a higher rate of recurrence, mostly within the first three years.
  7. It tends to be higher grade (more quickly and aggressively proliferative) and is also discovered at later stages.
  8. Due to its high recurrence rate, most treatments tend to include chemotherapy. Good news: Chemotherapy tends to work very well for TNBC.
  9. Like all other cancers, it stinks.

What Triple Negative Breast Cancer is Not:

  1. A death sentence.
  2. A slow moving, hormone-receptor positive breast cancer for which targeted treatments like Tamoxifen are available. (Although: some TNBC tumors have slight estrogen-receptor positivity, and so at times TNBC patients are prescribed Tamoxifen.)

In talking about this type of breast cancer in my support group and in the world at large, I often find myself having to place TNBC on a hierarchy of ease-of-treatability types. This is understandable. The world of treatment changes constantly, and clinical trials and subtypes and genomic testing are – happily – complicating and more specifically targeting treatments to every woman’s benefit. Yet: TNBC almost always comes out the worst, is still, in some circles, considered the diagnosis to deliver with a sigh and a pause, and Google/goggle/ogle/oogle aka do not Google will only offer doom. Don’t do it.

So, if you have it, I welcome you with open arms to this most unexpected club. We’re a rarer sort, part of the “danger” side of breast cancer. I think of us as the Austin Powers version:

danger-is-my-middle-name

 

Except we have better teeth.

Yeah, baby.