R/O Mets

I’m scrolling through my phone. Who do I want to know about this? I get to Z, and I don’t want to tell anyone.

I do a search for “cancer.” Ashley, Samantha, Catherine, Tasha, Aimee, Kara, Kristina. They all have cancer after their names, in my phone. Maybe I’m Chelsey Cancer to them too. I pick two. I send out a text. They respond.

No one else knows.

We were walking the seawall. I doubled over in pain, the throbbing radiating out of my sternum. And then it was gone, and I was normal, walking, talking, breathing. I rubbed the bone just under my skin in the center of my chest, the place with no muscle to pad it, the place where my ribs come together. Here, and then not. Painful, and then normal. Weird.

I was doing rabbit pose. I pulled my heels, and then the pain flooded through my chest and I uncurled with a velocity totally unacceptable in yoga. I laid on my back. And then it was gone. I did the next set, and felt just as I did two postures prior. Normal.

Chatting on the phone. I had to stop and breathe. Not too deeply, for that would make the throbbing worse. I pretended to take another call. And sooner than I could have taken a message, the pain dissipated and I went right back to giggle chatterbox.

I emailed our family doc. I don’t really know how to know if this is some normal random thing, or something I should come in for. I’ve had this for a long while now, since the chemo. My oncologist did a PET scan last summer, and it was not cancer making my sternum ache. It was not cancer. She said whether I came or not was up to me, but that I could definitely drop in and she would see me, and I could come in whenever. How are you feeling? I was surprised at how much a doctor could care. I made an appointment. She is sending me off for an X-ray. If you didn’t have a history of breast cancer, I’d send you home. X-Rays are scary enough as it is, since I’m fairly certain my scoliosis X-Rays are what caused my cancer in the first place.

The requisition form reads: acute onset of sternal pain with radiation hx of left breast cancer, on tamoxifen. r/o mets.

R/O METS.

METS.

We are ruling out mets. Mets, in cancer-speak, is short for metastatic cancer. Metastatic breast cancer is what kills. We are ruling out mets, and I have to remind myself we’ve already ruled out mets. Nothing has changed since the PET scan for the same symptoms, last summer. It’s gonna be fine….

I don’t want to tell anyone. No one. I don’t want anyone to worry. I don’t want to see eyeballs fill with tears. I don’t want the pity. I don’t want the swearing. I don’t want the worry. I don’t want advice. I don’t want you to relate. I don’t want anything.

I want to stand next to the ones who know. Who know inside their bodies what it feels like, the ones who have bodies warped by scars and who are riddled with plastic forms holding space where there was once tissue, the ones who know that feeling that feels like a belly full of ice cold water rising up into their chest.

I don’t want to be on the outside of this fishbowl called life, peering in. I don’t want to be on the inside, everyone else peering down into my fishbowl that is void except for my fear.

This is life. Life after cancer. Worry for the future. It is a good day to write a worry on a paper scrap, and roll it up inside my worry doll’s little worry pocket, so that she can take care of that worry that is so real, and so that I can focus on the present. At present, I know nothing except that I’m probably fine. At present, I know I have a long to-do list and a 4:15 yoga class. At present, I know I love Sam and we have great surprises and adventures on the road ahead. At present, I know if I call on them, my people will show up with buckets of love. At present, I know I have to get through this, on my own. On my own, with constant cancer-friend texting.

And maybe with The Song, if I can bear to hear her sing “I think I’ve got everything under control, it’s gonna be fine, it’s gonna be fine” when I feel so wildly out of control, when I’m unsure if indeed, it’s gonna be fine.

And so I scroll through my phone. I still don’t know who to tell. So I guess I’ll blog about it, and then everyone will know. After all, being a bad-ass is about honesty, isn’t it? It’s not about shutting everything inside, it’s not about no-feeling, it’s not about risking it. It’s about drawing the contours of what happened, of what hurts, of how it changed, and being a bad-ass is about making enough space by telling my own story that in the end, others have enough space to tell theirs, too, be it filled with hurt or tears or hope or anger or laughter. Isn’t that what I wished for, the other day, when I attended the Callanish film screening? It is, and I believe we have a responsibility to make this world the way we need it, the way we need it to survive. And so today, I’m doing that. I’m telling. This is what I need. It’s gonna be fine….

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Thoughts on Lisa Adams & the Media Flurry

So by now, you have probably heard about this whole Lisa Adams debate. Basically, two married journalists, Emma Keller and her hubby Bill Keller- wrote about Lisa’s awe-inspiring twitter presence (and related blog) with regard to her stage IV breast cancer. Both journalists were critical of Lisa, calling her writing about her cancer and about dying “TMI,” being generally totally tone-deaf, and in my opinion, absolutely missing the point of social media and why someone with a life-threatening illness, indeed, someone with a terminal diagnosis, might put herself and her experience out there for others to witness. I won’t rehearse these amazing critiques, responses, and thoughts on Lisa and her writing, but here are a few great pieces about what has gone down.

The initial articles shame this woman who has boldly, humbly shared her experience of dying. As if her metastatic breast cancer was a dirty, dirty secret she should hide. As if she did something to cause her breast cancer. As if she’s incapable of making her own decisions about what to share in public digital spaces. As if she were a child to be reprimanded for sharing her hurt. As if rupturing the picture-perfect personas that populate digital publics but that don’t really reflect life is a horrendous transgression. As if we were not all responsible for the cancer invading her body, precisely because we’ve not yet launched a massive revolution contra the insanely toxic capitalist invasion of our bodies, our earth, our world.

I was floored to discover Emma Keller, the initial writer, herself had breast cancer. How on earth…. I thought, and then, suddenly, it all made sense. She’s probably deathly afraid of a recurrence. Simply terrified. And there is Lisa Adams, blogging and tweeting away, the embodiment of exactly what she hopes to never be. She probably wants to run in the other direction, forget it ever happened, refuse the possibility. It would have been better if she just turned off her twitter feed.

The thing is, we live in comfortable la-la-land about breast cancer. Everything is happy-happy pink, people call themselves “survivors” (I just can’t get on board at the moment- it seems to imply that other people had to die so the “survivor” could survive those other, dead people. Can’t do it.), and we have celebratory walk-run-things in which we gather girlfriends, wave pom-poms, and adorn ourselves in clothing, makeup, and all kinds of decorations that come from the companies that produce the very toxins linked to breast cancer. It’s a la-la-land.

No one wants to know about the deaths, no one wants to hear about the treatments not working, no one wants to stare down the statistics and imagine themselves on the wrong side, no one wants to sit and listen to what it’s actually like, pom-poms and survivors aside. Lisa Adam’s tweeting ruptures the la-la-land. It’s public. It’s not pink. There’s no pom-poms, because, in fact, she’s dying. It’s not exactly something you can cheer on, there’s no “surviving.”

You might not hear these stories. I hear them everyday from other young women with breast cancer, from women with breast cancer in all different stages. I hear about, and feel the constant pressure to smile and say its “getting better” and that we’re “making it through.” I hear about, and sense, feeling alone in the midst of a crowded room, even when there are people bringing food and texting hearts and offering to be appointment assistants. I hear about and tango with the fear, the sadness, the horror that is not pictured anywhere, not reflected at all, except in the eyes of the other young women I know, who speak the language of chemo and hormone status and nausea.

Maybe the first writer, Emma, and her husband desperately need to convince themselves that what is happening to Lisa won’t happen to Emma.

The other day, I met a young woman with metastatic breast cancer. She’s the first person I’ve met who has metastatic breast cancer. We both attended a yoga class for young adults with cancer. She’s just like me. We were born the same year. She has a job and a fiance and dreams. And metastatic breast cancer.

I’m certain my eyes were wide. Inside, I gasped. My stomach churned. I desperately wanted to believe it wasn’t true, couldn’t be, impossible. I hoped it was a garish, ugly cancer joke. I would have done anything to make it not real, this young woman, standing in front of me, chatting about hormone status and chemo hats and oh- metastatic breast cancer. Anything. But there she was, with me, on the same road as me, attending the same yoga class as me. Nothing is permanent. Not her, not me, not the yoga class we attended. And so we sat and talked in that comfortable room with the high ceilings and drank tea, and there was nowhere to go.

I think Lisa Adam’s social media presence and the flurry around it should be a wake-up call. I think it should jar us out of the la-la land. I think it should make us think what might happen if we took her seriously, if we stared the stats in the face, if we got really up close and personal with death.

I’m afraid, though, that like so often on social media, the flurry will pass, and we will move on because we liked, shared, commented, participated. And Lisa Adams will still have metastatic breast cancer, and chemotherapy still won’t work very well for lots of people, and I will keep meeting young women with cancer, and some of them will have metastatic breast cancer. I don’t want it to pass. I want the flurry to come with us into the future. I want the flurry to grow. I want the flurry to be angry. I want the flurry to scream and shout and writhe and be black and ugly and angry. I don’t want it to be just a flurry of feeling. I want it to be a storm that doesn’t end until we actually deal with breast cancer. And all the other cancers. Then the flurry can die down, when there is no more cancer.