Tuesday, February 19, 2013

swimming with sharks

1. you always hurt the ones you love

Friday night my dad called to say hi, and I mentioned something in passing about fearing a recurrence of cancer. Although I’m prone to medical anxiety, I think it’s safe to say that every person who’s had cancer and who thinks about the future wonders if that future will include cancer. But my dad took this as his cue to launch into a pseudo-scientific list of reasons why I would live to be 112. It’s what he needs to tell himself—and I get it, because a lot of the time it’s what I need to tell myself too, and sometimes it’s what I need him to tell me—but I wish he would admit it’s part of assuaging his own worry. Instead, he says things like, “I’m concerned you don’t have a realistic picture of your prognosis.”

We had a calm, if lengthy, conversation about managing anxiety; at one point I said, “I know you hate emotions,” and he was like, “I do! I do hate emotions!” And then I hung up and felt too tired to clean the house or pack for our trip to San Luis Obispo or make dinner. I spent the rest of the night jumping between Words With Friends and the FORCE message boards.

The next morning, as I was trying to clean, pack and pick up the rental car, my dad called back and said, “I don’t want to upset you any more, but I thought it might help you to know about this article I saw. If you’ve gotten a double mastectomy and had your ovaries removed, your chances of getting ovarian cancer are—”

But before he could say “low” or “next to nil,” I started screaming at him. The cats got big-eyed and ran from the room. “I wasn’t even talking to you about ovarian cancer! I am trying to live my fucking life! Can we not make this a cancer morning?!”

Trying to live one’s fucking life when one’s life is threatened—maybe not immediately or even greatly, but to an extent that no insurance company would ever put its money on you pre-Obama—is the fucking challenge.

2. poster child

When I was still emitting daily primal screams in the months after the miscarriage, I stumbled across the blog, Little Seal, and essays of Emily Rapp, a writer I’d met a handful of times. What I knew about her: She was accomplished, beautiful and had one leg. She’d written a memoir called Poster Child, about how, when one has one leg, one feels extra pressure to be accomplished.

Little seals in foreground. Big houses in background.
But her more recent writings were about slowly losing her son Ronan to Tay-Sachs disease, one of those horrible genetic diseases found most often among Ashkenazi Jews,* though I’m not sure if Emily was one. She wrote about her own primal screams, which probably ran deeper than mine, although I don’t believe in ranking such things. It made me feel less lonely to read about someone—someone normal and admirable, no less—who’d been utterly turned inside out by the simple unsolvable experience of life’s unfairness. Death’s unfairness.

In one post, she talked about how she sometimes felt judged for doing things like laughing and drinking wine and attending writing residencies; shouldn’t she be attending to and feeling sad about Ronan fulltime? She said she had a responsibility to him to find as much joy as possible, to live the full life his disease prevented him from doing. A blog seemed like the perfect raw, immediate (and also easily judge-able) form to process all of it in the only way a writer can.

Every scary diagnosis comes with a mandate to “live life to the fullest,” instructions which always baffled me and pissed me off. So a truly well adjusted person would just set aside cancer or violence or grief and go tromping through the rainforest? Wasn’t that called denial? Wasn’t that impossible?

But there’s a thing that comes after the primal scream. Or, more accurately, between the primal screams. It’s a setting aside while holding on. I haven’t achieved it for more than a handful of minutes at a time, and I’m not sure if anyone has. I think maybe Emily Rapp found it for hours or even days at a time, but I also suspect she’s not done screaming.

3. gambling, gamboling

Me, all I did was go to San Luis Obispo for the weekend with my girlfriend.

We’d escaped there after other hard periods, and I remembered our June 2011 trip as more of a relief. Because I was sadder when I left, and therefore happier for a break from my grief and anxiety? Or did this trip feel a little more sober because I’m still only a third of the way through chemo and it’s harder to truly escape?

I don’t know. But AK did book us an ocean kayaking tour, and I know it felt like living life to the fullest.

It’s hard to see pictures of my bald-headed self having a good time and not imagine some sort of condescending voice saying, “Oh, good for her. Look at her living life to the fullest, not letting cancer get her down.” The implication being that going on vacation was a noble act; that I was doomed; that these pictures would end up in my funeral slide show. (An imagination is a terrible thing.) The real accomplishment isn’t “not letting cancer get me down,” it’s getting back up and appreciating the world after it does, because it does.

Suiting up. Wetsuits are so warm and comfortable. I wish I could wear one to work.
And still I don’t feel like I’m articulating this very well, in any non-slide-show kind of way.

So I will just say that we pointed the bows of our yellow kayaks into the breaking waves, and it was impossible, for a little while, to think about anything else. I will say that it felt great to do something physical that didn’t involve needles or knives or chemicals. I will say that we saw sea otters grooming themselves in kelp beds and seals sunning themselves on the rocks.

Rocks and kelp beds keep them safe from sharks, but they can’t spend their whole lives there.

We burned a zillion calories paddling against the wind that kicked up (they had to cut the trip short, just like our trapeze class, but at least we got to paddle through a few caves first), and spent the rest of the day eating: steamed clams, ice cream sandwiches, Mexican-Greek food at the Wild Donkey.

Monday morning we slept in and shopped at Crazy Jay’s and visited some kind of apple orchard/farmer’s market/petting zoo place near Avila Beach. I think it’s safe to say that baby Nubian goats are the cutest things to ever walk the planet, and they only get cuter when they eat lettuce leaves.

That bird is all, "Hey, I'm cute too. WHERE'S MY LETTUCE?"
“Do you guys want to do some gamboling?” AK asked. “Come on, gambol, you guys!”

They obliged.

*AK’s Israeli supervisor likes to attribute my breast cancer genes to my quarter Jewish-ness, even though the genes come down through the WASPs on my mom’s side of the family. But has anyone written about how oppressing and isolating people for centuries, to the point that they have to marry cousins, is a kind of slow, creepy genocide?

I’ve been reading about the eugenics movement in the U.S. as it relates to American perceptions of “poor white trash,” but it’s hard to read about forced sterilizations and not think about my own upcoming “strongly encouraged” sterilization. And how I’d be on a lot of eugenics hit lists. And how I never really cared about reproducing my DNA, but it’s disturbing to think there might be people who are happy I’m not, and I can’t say fuck you by putting a Jewish-Latino gayby into the world. And how there’s a place inside me where my DNA and my socialization and my grief have formed a sort of psychic tumor that whispers, Yes, you are a degenerate. Best to end you now.


stephanie said...

Oh, Cheryl, it's good to see you write about what you're going through while still maintaining your sense of humor. Glad you got away, and I think you may be one of the only women I know who can actually have no hair and still be gorgeous.

Jesi said...

why is everyone so afraid of mentioning the d-word? d=death. when my sis was diagnosed with breast cancer, my older sis and mom and dad were like in lalala land. like no one wanted to even mention death or think about it, it was as if we would get struck by lightning right on the spot with just uttering the word death. sorry ppl but that's life, death is a natural part of it, we wouldn't have life without death. And if nothing died this world would be hella crowded and disgusting and sucky. a lot of ppl see me as being the person who sees life with the cup half empty, while I feel I see life as how it was meant to be seen. all of it! the ups the downs the death the tears the laughs the pain the non-pain the monotony oh the monotony, etc.

I guess what I'm trying to say is when did death become so morbid? it's a natural occurrence of life. and what's so wrong with thinking about it, and talking about it? and for effing sake, ppl who have been diagnosed with cancer have every damn right in the world to think and talk about it! why do we have to be such shiny happy ppl all the time! and why is it you're not happy shiny if you think/talk about death? There is nothing wrong with anyone who thinks/talks about death!!!

ok will stop ranting. well maybe not.

When I was told that I had BRCA2, everyone and I mean everyone told me not to do anything drastic. (what does that mean? having my breasts and ovaries removed? moving to Canada? quitting my job and opening a cupcake kiosk?) oh, ok. So saving my own life is drastic? basically these ppl, and i love them because they are my friends, have no effing clue what they are talking about! The guillotine with their name on it is on some other planet, while mine is the room filing it's nails. and that's why it's so easy for them to say don't do anything drastic. that's why it's so easy for anyone to tell you do this don't do that think positive don't think about death (insert happy thought here).

and i won't even get started on all the pink ribbon stuff, lance armstrong, save the ta-ta's bull sh*t, etc etc. oh my, doesn't breast cancer make a great marketing tool? ugh.

love you! and you look so fantastically hot with a bald head! you know this sounds so shallow but that's what I fear most about being diagnosed with cancer, losing my hair. ha!

and thanks for sharing!

Cheryl said...

Stephanie: You are kind! It's great to hear from you.

Jesi: I love the image of Death sitting in the room filing its nails. Yeah, that's exactly how it feels sometimes.

I don't know what "Don't do anything drastic" means either. Why is drastic bad, when it's in response to a drastic diagnosis? Also, I wish someone--just one doctor--would tell me there's a case to be made for keeping my ovaries. I still probably wouldn't, but then it would feel more like a choice, less like a sentence.

I hope you never get cancer, but I think you'd look hot with no hair and no pink ribbons. :-)

Jesi said...

thanks sweets! and thank you a million for listening to me rant! sometimes when i rant i'm afrais i may be offending someone. i was also afraid that my rant was totally off topic. haha!


Cheryl said...

I'm a fan of ranting. As you may have noticed from this blog. :-)

Sizzle said...

I relate to so much of what you're saying. It IS hard to articulate it but you're doing a really good job of it. Those primal screams? Yes. And setting aside while holding on? I briefly danced with that. And then you go through something like this and you don't ever see the world the way you used to. Sometimes I miss the way I used to see the world before cancer, before my dad died, before anything that ripped my heart out occurred. . . but it is what it is, right? And so we move through it, screaming, laughing, crying, doing whatever we can to keep going.

God damn those goats are cute.

Cheryl said...

Beautifully put, Siz. I miss the days when I thought perfection was possible, even as I see the costs of that thinking, even as I love my older, wiser self. But nostalgia and innocence are powerful. It's why there are so many movies about young love, I guess. There should be more about baby goats.

Peter Varvel said...

Thank you for this post, especially #3.