My New Location

I'm changing to a wordpress website. It's called "Pink Stinks." I'll be blogging there from now on.

It's still a work in progress, but here's the first post.

Pink Stinks.

My/Your Bad Cancer Ass

There are days when I grow impatient with the grief that cancer brings. Dwelling so heavily in Cancerland takes its toll, and robs us of the need to celebrate. I’m not talking of a superficial hoo-ha Yay to the Pink Sisterhood kind of celebration; I’m remembering to check in on the parts of this body, this life, that are still healthy. Because you know what? There are big parts of this body that can still kick ass. Major ass.  Colossal, massive, Trump Tower ass.

In this spirit, and in the spirit of so many bad ass women and men I know, let us channel some serious badassery. Yours and mine. Shall we?

Things my bad ass can do (and please add yours!):

1. Make bad ass pancakes. With cloudberry jam and whipped cream.

2. EAT said pancakes with my ass all bad in my cheap wannabe Amish-ass chair. 

3. Write a little.

4. Run. Seriously slowly, but whoop there it is. I can still run!

5. Read good-ass books. (As opposed to bad bad-ass books, which are basically just bad.)

6. Make a mean cup of really dark coffee, and savor it. 

7. Look out the window and name a few nice-ass birds, a few butterflies.

8. Complain. Especially about traffic.

9. Avoid cleaning by listening to music, petting the cute-assed cat, straightening a few loose papers.

10. Compose the most badass-mediocre poems, complete with a side of fries.

11. Throw out a few wildflower seeds and lo: a most ass-bad posterior patty melt of random flora. 

12. Forget important things, like my cell phone, or my purse. Spank me!

13. Interrupt my husband in the middle of a long-winded and oft-repeated story that I know the punchline to. It’s not my best moment, but if there’s one requisite for Big Bad Badassery, it’s truth. (Don’t tell it slant.) (Sorry honey.)

14. Seriously shop online, resulting in 1) one unopened badminton set and 2) a feline leash that, upon the first attempt to place it on our cat, resulted in her “disappearance” for several days and her now-severe PTSD around string. 

15. Ability to swallow four large chemotherapy pills in rapid succession!

16. Gargle – badassedly - with salt water. (Helps with the mouth sores.)

17. Lose hair, then look directly into the mirror. 

18. Say to myself:  I am bald. I am a badass. 

19. Sleep. Nap.

20. Imagine full recovery. Imagine seeing my kid graduate from high school.

21. Recite and dance to this video with Peter Dinkler. Space pants!

Because silliness is necessary, and because laughter heals: What, dear reader, are your badass superpowers? What gets you through these crazy days? 

Fear of the Unknown

I’ve started treatment. As mentioned in a previous post, I’ve developed a 5 cm growth in the area near my armpit, and it’s so unmeshed in muscle/sinew that it’s currently inoperable. The goal with this new treatment (also called second line, which means you’ve already been through chemo once) is to reduce the tumor in order to be able to cut it out.

The drugs? Xeloda and Taxotere. The Taxotere comes in the form of an infusion every three weeks, and the Xeloda is a 2 weeks on, 1 week off cycle of 8 pills a day. So far the 3-4 days after infusion are a wash of exhaustion and aimlessness*, but otherwise so far so good.

I keep returning to what the oncologist said: that there’s only a 30-40% chance of success with this. That even if all goes well, there’s a very high likelihood of recurrence, and then, then….who knows? Who knows? It’s like I call into a canyon and cancer has muted the world. There’s no reply. Just silence.

It’s in this space that I live my days now. In treatment for a recurrence, running the second lap around the infusion clinic, I’m not as optimistic, not as intrigued about the novelty of cancer treatment. The first time felt so much more new somehow, I felt like I’d joined a sisterhood and even baldness felt cool. Tough. Empowering, even. And I thought that if I beat it this time, then surely I’d be one of the lucky ones who made it past the 5-year mark. 

Not to be. It came back. The cancer came back. And this time, more so than the last, I’m tired and grief-stricken. The hair loss stinks, quite frankly, and this recurrence feels somehow more serious. My family is quietly afraid, and the pain this disease has inflicted on friends, family and coworkers fills me with such sadness. I hate it. I hate this disease. I hate cancer.

It’s these small, repeated losses that begin to add up. I picture a full, 1000 piece puzzle with color, depicting someplace beautiful. Paris, say. That’s my life. But now each new treatment, each surgery, each new diagnosis, each new big and small loss is a theft of its parts until, corner by corner, segment by segment, only a few disconnected pieces remain.

What goes with what? And who, what’s left?


(*except for an initial migraine reaction which sent me to the ER twice, and to the MRI machine)

The Tyranny of Positivity

Over the course of this diagnosis I have often heard people say, “You have to stay positive. You have to stay strong.” Often these are people who have not had cancer. They mean well, and I very much empathize with the struggle to find language that offers hope, support, and kindness in what can feel, as a bystander, like a helpless or deeply uncomfortable situation.

And it is a struggle. So much of the language we use to describe cancer revolves around war: battle metaphors, fights, soldiers, destructions, killing, death. These words have not felt right to me, as I am no warrior. I could say incoming to the chemotherapy, but because it’s not bullets, I don’t. I don’t wear armor, I don’t patrol. And I will never carry a gun.

The language of a cancer “journey” has also felt inadequate: Where exactly, I wonder, am I going, and why can’t I go home? Where are my exit tickets, and what’s the return route?  There’s something that implies desire or adventure about the language of travel too, as if the ticket agent said, “Hey, we overbooked for Oahu, but here’s Cancer. Terminal 3.”

No go.

And so, in thinking about writing this blog post, I wanted to home in on why remaining positive, staying strong, or remaining hopeful on your cancer “journey” might all feel wrong. Or right. Or a mixture of all of these, or none.

Have you read that poem, “Wild Geese,” by Mary Oliver? She starts it with the line “You do not have to be good.” This one line has been such a touchstone for me, for what it tells me is this:  Authenticity matters more than obligation. Truth is what matters most. And I have taken this to heart. Reader, let this be your creed: You have no obligation to please. Your cancer is yours, your illness - whatever that might be -  lives only in you. Of course family and friends express care, but the home of all of this lives in your body, and therefore the ownership and truth of it begin and emanate from you. In that same spirit, I have resolved, in this process, to allow the full spectrum of grief, anger, surprise, gratitude, and yes – love and joy – to enter the circle. Not to wallow, not to ignore, but to give all of it its due. To live it, to breathe it in, and (this is important) when it’s time - to let go. But I will not hurry the grief, I will not rush the anger. I will not be told to go on quickly now, when time is all I have left.

The truth is that you do not have to be good. You do not have to be anything at all. You are not obligated to answer questions, to answer the “How are you?” that assumes a quick response, with the asker not realizing the ache the question triggers, and the fireball of emotions your belly carries in the fast few startled words you are able to utter.

You can say nothing at all. Or you can laugh. There’s a little crazy in it and this absurdity can heal.

All of it, all of it, is part of the arc of it, like wild geese, or the full turning of the day – “over and over” like cancer, like darkness and light “announcing its place in the family of things.”

The Cancer Monster.

As a breast cancer – patient? victim? survivor? – I am drawn to the philosophy of absurdism.

Why?

I am afraid. In the same way that I don’t know what to call myself (patient, victim, survivor), I don’t know how long I have to live. The sudden, cruel, cold reality of mortality is an abrupt door closed and open in front of me and I’m not sure what to do, what to think, what to feel.

So in that vein, let’s pretend this philosophy called Absurdism can speak. He says:

“Life is mysterious and unknown.”

He’d lean back in his chair at the café, take a drag off his cigarette. Blow out smoke.

He’d continue: “There may or may not be meaning to life.”

He’d look out the window, tap ash. 

“Therefore don’t take it too seriously.”

I turn to the dishes, the pile of disability paperwork and tasks to manage. I look at my daughter’s pile of laundry, see the overripe fruit in the bowl. Traffic rushes by outside our front door, birds continue their spring singing. Old glue bottles, broken pencils -- the wilting Mother’s Day bouquet is still in its plastic. It’s a film panning to set a scene called The Ordinary, and I’m looking at the screen.

Don’t take it too seriously. I’ll soon be off work, most likely long-term. That’s one huge change. My body’s been razed, carved of parts. Another. My husband and daughter worry quietly, prop up our house with resolve, swallowing their own needs in the process. Friends and neighbors check in. More change. And my fear, my despair – it is laughable and a monster, it is north and south, it is surrounded by an orbit of maybe.

“Is there meaning in the universe?” 

Maybe.

“Is the pursuit of meaning worthwhile?”

Maybe.

“Should we fix the fridge, save for Paris?”

Maybe.

“Will I live to see my daughter graduate?”

And here the monster laughs, pats my knee. Rares back in the rocking chair. Turns to me and with razor teeth, smiles.

“Maybe.”




How do you cope? How do you reply to the ongoing"maybe?"

Gratitude, Amen.

I want to say that there will never be birds enough, never be sunlight or words enough, to express the deep love and gratitude I have for the friends, colleagues, neighbors, family (and combinations thereof) who have offered their kindness and support in these past years. When I think of all of it, I want to fall on my knees like water to moonlight, and cave this body fully in to gratitude.

What this has meant is solace and comfort. It has meant knowing I can ask for help, though I resist doing so, though I pause.  So many of the women I know have children, busy lives of their own, work that must be tended to, whether at home or paid – it is a kind of sisterhood that I want  - nearing the angels – to herald, to praise. 

Hallelujah, say these earthbound sisters*, these earthbound birds. We are here.

House Finch Image Source

Finch song.

*(And wonderful brothers, too.)

Afraid.

Less than a month ago I was working, coming home, preparing dinners and chatting and running errands and being a mom, a wife, a friend. The business of those days was a dream of ongoing tasks that filled my days like background music. It was, to continue the metaphor, a refrain that the word "health" propelled, a momentum of its own buoyed by a returning trust in the world.

That's been shattered. There's no coda, only a wrenched needle ripped across a record, leaving those repeated clicks between ongoing, amplified silences. I'm sitting here and it's nearly midnight and my life, what it was, what it used to be --
click.....
click....
click.

I have cancer again. "Again." The implications of that word continue to frighten me. And the thread of optimism is still there, but it is fraying.