Pink Stinks

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:

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.

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.

Not Glass

3:26 AM.

I woke up to the crack and touch of an ice window breaking.

As if under water.

My CT scan is next week.

full frame shot of snowflakes — Photo by Pixabay on Pexels.com

I Remember.

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

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.

Oh, warmth. Oh, living.

And arrival. Here now.

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

My Relationship to Food

Show of hands if cancer has made you re-think your relationship to food?

Me, too. Not that I was ever an unhealthy eater. Au contraire. For the last two decades, I’ve prioritized fruits and vegetables, whole grains, healthy proteins (mostly fish, chicken, eggs), and lots of exercise. I was running 5 and 10k races, lifting weights, and I kept my weight healthy. In talking to others, I hear this story frequently: “I did everything right, yoga, ate vegetarian, meditated – and I still got cancer.” I stand 100% with you, and am truly sorry.

We do so much to bat back mortality. Skin creams, reps at the gym, another helping of kale. Green tea and running. We “beat on, boats against the current, borne back ceaselessly into the past.” Like Gatsby in F. Scott Fitzgerald’s famous novel, we’re looking for Daisy’s green light across the water, the one that says you’ll stay young and healthy forever. It’s as if we’re under some collective delusion that we alone will avoid the final drop off and if only we find the right combination, the right cream, the right treatment — well, we’ll be all right then. And we keep on, going on, butting against the inevitable.

Cancer mocks that. Cancer is a skeleton who knocks on the door and refuses to leave. Cancer says, “Whatever,” shrugs and smirks at the next helping of broccoli. But I do it anyway, eat better anyway. It’s the one thing I can control, one of the few parts of the radar blip where I can say: “I’m here. I’m going there.” The shadow side of this is that some people, and I’ve met a few – who become so obsessed with food and unproven cancer cures that it borders on an eating disorder. (Steve Jobs’ decision to follow elements of the Gonzales regimen, to include coffee enemas and taking an enzyme from pigs, may have contributed to his shorter life span.) But there is one, emerging practice that seems to be supported by scientific research, and it’s a big reason why I’m writing this post today. It’s about fasting.

The evidence?

I’ve decided to do a modified, 24-hour fast prior to chemotherapy, and a 12-hour fast after my infusion. Fasting for 48 hours prior – the recommendation for chemo – is too much of a stretch for me, and even now, heading into 20 hours of no food, I am beginning to dream of cakes, pasta piles, cream cheese frosting, sushi, and banana splits. My body is screaming for carbs. I’ve been poring through recipe magazines and books and staring at the butter sauces, pancakes, battered fried prawns.

And cake. Did I say cake?

blueberry-banana-cake-7 — This photo is from a fabulous cake website. Not that I’ve been looking. https://livforcake.com/blueberry-banana-cake/

I am going to bake this cake tomorrow. And eat it.

Alone. Heh.

And oh my God I miss bacon.

I miss bacon and fries and burgers and pizza and candy. I miss chocolate shakes. I miss a cool mojito – alcoholic thank you very much- with cussing and dirty-joke telling friends around a table in suburbia. I miss steak, I miss fried chicken, I miss Coke – my cans of Coke and Diet Coke – and I miss Swedish fish. I never ate much of these – always in moderation – but the casual nonchalance – the not-fretting – is what I miss the most. Always there is a second guess now with my meal, always more pressure. It is another price to pay for this disease.

And so, this Friday, it’s 22 hours of fasting now and an infusion in a few hours. After the Taxotere, I’ll go home and probably nap, read a bit, wander and not get much done. But it’s ok, it’s ok. Food is coming.

And I’m here. You’re here. Thank you. And love out.

“Zero at the Bone”*

I am searching for the language to describe the feeling of a future being gone.

The ways in which cancer robs words, robs next week, next month, next year. Robs plan-making, robs a body of potentials.

This is not the time to be positive.

Allow for grief, allow for anger.

Is it thievery? Theft? Or slicing? A person could imagine meat now. A dog running into an old-time butchery, stealing the prize steak. The butcher himself holding the meat cleaver high, white apron bloody, yelling, chasing the dog into the alleyway. Future lost profit.

Not a rug swept away. An entire floor.

Birds here for the season.

The abrupt “off” of a heat-relieving fan.

Such quiet.

In bed, all imaginings ending with “no.” Remaining awake.

When listening to clocks, counting.

Music in the entryway and briefly the scent of perfume—

—

hollered greetings hill to hill,

strangers.

What strangling might mean if a throat was held by air.

Absence.

Remaining awake to think of it

*Link to the Emily Dickinson poem from which this title is taken.

snake on grey wood — Photo by Pixabay on Pexels.com

Stanford Cancer Center: A Second Opinion

It was almost a road trip.

A dear friend (Casey) and I took the hour or so drive down to Palo Alto for the second opinion. I’d been wavering on this for awhile: I liked my oncologist, knew she was offering the standard and best treatment options, and the cost for this appointment was near-prohibitive. Arranging yet another medical appointment just added to the hassle and pile of disability paperwork, bills, and gathering bureaucratic flotsam of disease- and life-management. And taking yet another day off from work added to the disconnect I am/was already feeling from my previous life, which every day seems like a shore to which return becomes less possible, a skirt whose hem is unraveling into disarray.

But the confines and corridors of hospitals offer some kind of architectural antidote to chaos, I think, and such was the feeling of certainty and organization at Stanford that, in addition to valet parking, the waiting areas themselves felt like a new home. Subdued beige and brown colors, warm lighting, clear partitions between soft sofa sections — I felt like a welcome and known tourist. We’ve got this, the decor seemed to say. We’ll take care of it. All around was the hush of quiet resolve. Magazines. Efficient secretaries. The reassuring sounds of keyboard clicks.

My name was eventually called and Casey and I went in to the exam room. The doctor came in, introduced himself, and my first impression was that he was a kind and professional, matter-of-fact man. He had taken extensive notes and proceeded to outline the previous two years of my condition, checking in to make sure all was accurate. I was honestly impressed. He even had a booklet with pre-written notes. He then examined me, affirmed that my current treatment plan was spot-on, and opened up the appointment for questions. I had many, a full list of my own, which I won’t deliberate here except to say that: he took his time. I didn’t feel rushed. He was calm, reassuring, factual. I felt such gratitude for this. The bottom line? Even if this protocol doesn’t work, even though a triple negative breast cancer recurrence is frightening to the core, isn’t good news, doesn’t bode well, means chemo resistance and possible death in 1-3 years (none of which he said, by the way), even with all of these, there is this: Stanford is a hotbed of TNBC research right now, that immunotherapy trials are available, that continuing to eat healthy, to exercise, to gather dear friends and a squad/coven/circle of support matters, that options are out there, and that in this science and medicine and long car rides with speeding and stop-and-go police-ticket traffic — still: this is not the end of the road for you, traveler.

And perhaps this is evidence of my near-worship of doctors, the balm I hope for in their hands. This may be the desperation of all of us whose lives are called suddenly into question: Help me, science. Salve my dis-ease. I don’t know. And it’s possible I was hoping for some kind of rebirth — it’s possible that a hospital can be a kind of church. I imagine that hope itself is a kind of healing, and wise doctors know as they look at the patient – the mother, the father, the friend or sister or son — the scales must be tipped so gently, so delicately, with truth. I don’t know how they do it. And yet – like love calling us to the things of this world – they do.

The appointment came to a close, and Casey asked a few questions and heard some things I didn’t, which is important. Take a spouse or friend with you. They will hear what you will not, will tell back what you passed over.

Finally, we left the hospital and went to Stanford Mall. There is nothing to distract intense cancer talk like I’ll-never-really-buy-this-sequined-dress “shopping” at extravagant designer boutiques, lunch, laughter, and Sprinkles cupcakes. OMG OMG OMG. Lemon blueberry!

Bottom line: I’m glad I made this appointment. It validated the current treatment protocol, cast a wider net on later, as-needed treatment options, offered a sense of the bigger medical picture on triple negative breast cancer, helped me learn about my friend’s prior career as a chicken dealer, and opened me up to a whole new world of pastries. There are no cons except the cost.

Please do share your experience with second opinions, Stanford, or Sprinkles, or any combination thereof or other. Love out.

Welcome

Thank you for reading. This is a site that describes my new life with triple negative breast cancer, a rare and aggressive form of breast cancer that has fewer treatment options than hormone-receptor positive types. The good news is that research on TNBC (triple negative breast cancer) is very popular and ongoing right now, so many clinical trials are available. More on the “About” page, and thank you for stopping by.

Good company in a journey makes the way seem shorter. — Izaak Walton