Triple Negative Breast Cancer – Page 4

These are the (Detached, Strange) Voyages.

The CT and bone scans came back negative for metastases.

I should feel elated, grateful, should be jumping for maniacal, life-affirming joy.

But I’m not. I feel like: whatever. Meh. As if in a Star Trek episode, my shields are up. Odd, huh? The closest description I can come to this feeling is that of an abused lover. Cancer is the abuser. He (and it could just as well be she) punches me out with a diagnosis: stage 3, triple negative, lymph node involvement. I am injured, and then I grieve, and slowly begin healing. Cancer gets quiet. Goes into remission. Behaves, offers hope.

background beautiful blossom calm waters — For a brief moment, you could stand here. You might feel relief.

And then he returns with another punch: the tumor’s back. And then another: surgery. And then another: high likelihood of recurrence. And each time my ability to emotionally engage with the process is reduced. I’m not talking about depression. I’m talking about a step by step process of detachment from a body that no longer feels trustworthy. All news is now to be listened to and taken like a memo, and I’ll consider only the action items. And the abusive lover’s apologies – cancer’s temporary respites from terror – are not to be believed.

animal animal portrait animal world annoyed — Back again, little fucker? Seriously? Don’t even.

Surgery is now possible and my doctors are planning to remove the tumor. Two ribs will be excised, and permanent nerve damage to my arm is likely. The tumor has grown, even from last month. I picture it, sometimes ask it what it wants, and all I see is a little dark factory that has programmed itself to proliferate. It’s like V’Ger from the original Star Trek. A satellite that was originally built to gather information, it eventually became self-aware, and then colossally destructive. I think the cancer cells are a little bit like that: they are cells that got programmed incorrectly, and now are replicating and replicating in a lethal effort to survive.

Please stop, I want to say.

Take your efforts elsewhere.

In the meantime, one day at a time. We wait now for the surgery date and plan for four weeks of recovery. Maybe I can have my ribs from the surgery.

Maybe I can turn them into salad spoons.

food on table — That would be strange. And yet:

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.

What We Talk About When We Talk About Work. And Cancer.

Should I work during treatment?

Can I go on disability?

What about health insurance? My finances?

How do I talk about my cancer? Should I?

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.

nature red forest leaves — Forward, backwards, or off the beaten path? Part time or full time? Or maybe a walk in the woods to think it through.

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.

two person in formal attire doing shakehands — This is a picture of two white men shaking hands. WordPress needs more diverse work photos.

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.

green grass field and mountain — Beautiful, but not my backyard. You don’t want to see my backyard.

I wish you, or your coworkers, or your spouse or relative, a supportive and meaningful path back to work.

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.

“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.

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:

It’s a breast cancer that has no hormone receptors, and therefore currently no targeted treatment.
It’s a rarer type – 15-20% of breast cancers are triple negative.
It’s more common in African-American and Latina women. Diagnosis and treatment equity are a real need.
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.
It is aggressive and tends to spread/grow more quickly than the other types.
It has a higher rate of recurrence, mostly within the first three years.
It tends to be higher grade (more quickly and aggressively proliferative) and is also discovered at later stages.
Due to its high recurrence rate, most treatments tend to include chemotherapy. Good news: Chemotherapy tends to work very well for TNBC.
Like all other cancers, it stinks.

What Triple Negative Breast Cancer is Not:

A death sentence.
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.