“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.

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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.

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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.

 

 

 

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

It’s coming.

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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.

 

Joy? With Cancer?

There’s a dairy company in the Bay Area called Berkeley Farms, and one of their milk carton slogans is, “Farms? In Berkeley?”

I will now co-opt it.  Joy? With Cancer?

The answer, sisters and brothers, is hell yeah. Because fuck cancer and its thievery. If you’re in treatment, there can come a level of exhaustion like low tide before a tsunami that is so deeply and utterly draining that you cannot see any shore. The dry and distant ocean floor, broken sea shells, rotting kelp, driftwood, spaced between long distances of drying sand–the metaphorical and barren landscape for even getting water becomes a distance so far and difficult that rest and floating in a haze of whowhatwhere is the only option. And that’s just the first few days.

But I digress.

We are talking about joy. I am talking about the resurgence of fresh water, when the tide returns, when some semblance of normalcy comes back to the body.

It is summer vacation, and I’m so grateful to have this time with my daughter. She’s entering high school next year, which means that the needs and tendings of little-kid childhood are receding. They will always be there, as they are all of us, but there is a shift. A shift outward, as in looking out to sea. In this spirit, the two of us went to the Fitzgerald Marine Reserve yesterday. This is in Moss Beach, CA, south of San Francisco. The reserve is not well known, but it has some of the best tide pools I’ve ever seen. Such was yesterday that we saw harbor seals, anemones, European green crabs, and one native red rock crab that snatched another small hermit as it attempted to scuttle free.

The day was grey, overcast, perfect.

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The rocks were slippery but the pools beckoned.

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And afterwards, we took a hike along the bluff. Always I slip back into metaphor – I can’t help it. The small gaze, the larger. The bluff and the pool. But as we walked along the edge I couldn’t help feeling grateful for all of it – the water, the land, even the dark cloud cover that offered a kind of comfort against being too brightly lit. Who can take constant light, after all? The risk is of burning.

We continued, found some beautiful trees.

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And then took some time to sit under them.

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Joy, I think,  doesn’t have to be noisy.