Keeping it real

nailed it

When I first started writing this thing I didn’t tell a soul. These days, most everyone who knows me knows about it. A weeks ago I even busted my stepmom with the site up on her iPad. I said, “Oh, that has bad words in it.” and she said “That’s okay.” but I was kind of embarrassed. It was easy to write honestly when I didn’t think anyone close to me would see what I had written. Lately though, I find myself second-guessing the topics of my posts—mostly worrying that what I  have to say might be depressing or worrying to others. After all, these are the days of the self-aggrandizing social feeds:  Look how much fun I’m having! Look where I am! I do it too, lord knows I’m not Instagramming my chemo treatments, although actually, now that I think about it maybe that could be kind of funny. Like if I got super made-up and threw on the Loubous and made duck faces next to my barf bucket and hastagged everything #sorryimnotsorry and #yolo and stuff. Anyway, I know I’m not the only one who’s life looks more like the brown noodle mess in the cardboard wrapper than the delicious entree depicted on the box cover.

Today I was texting with someone who works in the cancer biz. We were talking about my writing and she said exactly what I needed to hear:

“I have interacted with many cancer patients at various stages of their disease and often it seems they have to put on this ‘fighting the good fight’ air for the people around them.”

That’s it. That’s the sticky trap within all this cancer stuff—the BRAVE WARRIOR trap. I bristle when I hear that a person is “fighting” cancer. I can’t fight the crazy division of cells inside my body any more than someone could fight off arthritis, or MS or any other disease. If you tell me that I am “fighting” cancer, then by the same token you are telling me that all the people we have loved that have been lost to this horrible disease are gone because they didn’t try hard enough. That’s wrong.

I can’t write about good stuff all the time. I’m not going to be the plucky, determined cancer battler feel-good hit of the year. I can’t. I’m sorry. I’m straight up terrified. I don’t want to die, I’m not brave and I’m no warrior. I’m not fighting cancer, I’m fighting to find meaning and purpose in this life. That’s all.  The only way I know how to do that is by telling myself these stories, by breaking my experience into small pieces and taking a closer look. I see things don’t look like I expected them to; my world no longer resembles the photo on the box, dammit. I look again though, and I see all the ingredients are still there. Maybe I can still find a way to enjoy this Chili Spaghetti.*

 

*Seriously? Chili spaghetti? Is that actually a delicacy in Cincinnati? I would never, ever eat such a thing. I was speaking metaphorically. I just wanted you to know that.

 

Art wins. Every time.

Today I got a wheelchair. And yeah, that’s the most depressing sentence I’ve ever written.  Hey, my legs might not work too good but my eyeballs do, so I wheeled straight over to the Turrell at SMoCA. Because fuck cancer, that’s why. Yay art!

image

 

Meanwhile, back at the ranch

The last few weeks have been a blur. I had a strong intuition I had to leave Vegas. For good, or else I would end up in the hospital there, and die. I heard a voice say it. I don’t remember packing, or driving away.  Just showing up at Katie’s house with a bulldog, and a parrot and Brett. Poor Katie. Anyway, I ended up in the hospital just like I knew I would, but I didn’t die, so I must’ve done the right thing.

Then it was out of the hospital, time to start the new chemo. I don’t know how I didn’t expect it to be different this time – I’m so much weaker. Did you know I now have ruched skin? I have more folds and pleats than a 90′s Valentino gown. I am thinking about creating a puppet theater where my arms will star as the front legs of famous elephants through the ages.

Finally the big day arrived even though my insurance carrier, Blue Shield, to whom I pay nearly $700 per month for a PPO plan, is balking at covering one of the medicines my oncologist wants included in my latest protocol – Perjeta (aka Pertuzamaub) a fully FDA-approved, aready-on-the-market HER2 breast cancer drug created by the nice folks at Genentech.  Why? Nobody knows, and while the insurance people push their papers around, there’s just this cancer taking a casual stroll through my body so I guess a decision maker somewhere said, “Ah, fuck it, two out of three aint bad…” so I will get only Herceptin and Gemcitabine this go-round.

I get what I get, and I don’t get upset. They hooked me up to the tank and the view was very pleasant out the window of the Mayo Clinic and Hil and Fireboy came and we chatted and I soaked up all the medicine like a thirsty loaf of french bread and then it was time to leave.

As I started down the hall it was as if with each step, I sunk an inch deeper into the floor. By the time I made it to the nurses’ station I felt as though I were knee-deep in linoleum. Someone put me in a wheelchair. Somehow I got home and then crawled into bed and then I started barfing. I felt like a doll with a hollow plastic body. I slept and retched and eventually, I started hallucinating. When I could, I’d pry my eyes open to stare at the geometric patterns spreading off into all directions. Millions of teeny plus signs on top of plus signs on top of plus signs. Chevrons. A flashing black and white snake that strobed the entire room. I couldn’t eat or drink anything. Not even water. As the days went on I had the sense things weren’t going well, but I also didn’t really care. Rather than the panic I’d been choking down for the last few months, I was starting to sense a strange relief nudging in. I felt as though a giant pair of scissors were descending from the sky to clip me from a silk rope so that I could be freely tossed, cartwheeling in slow motion, on to a giant pile of pillows.

Katie crawled into bed. “Don’t leave me.” she whispered. “You’re my sister.” I told her not to worry, that I was going to handle shit for her, I would pull strings and she wasn’t going to have any more problems again, ever. Like in the afterlife I have some deep mobster associations, or juice or something. I think that’s what I said. I think she laughed. Maybe I dreamed it.

Every third or fourth time I opened my eyes, Hil was rubbing my feet. They were 100 miles away but it still felt good. Once, I opened my eyes and she was standing on a chair, attaching a string of party lights to the ceiling. Another time, I peeked through one eye and she was hanging bones and lace and folk angels on a hook over a chair. Through it all,  I dry heaved constantly into a silver ice bucket.

This went on for six days. When I opened my eyes Hil was gone. She left behind magic wands made of driftwood and string and a pair of magical, bejeweled Mainifesting Earmuffs from Beezy which I now wear to bed every single night.

magicks

 

Katie works on a paint by number painting of labradors in the evenings. She got us berets to add to the art colony atmosphere and we wear them while she fills in the spaces with her brush and I sit on the sofa and Fireboy feeds me on the hour like I am a helpless baby bird.

It feels like the medicine might be working. I don’t know which will disappear first- me or the cancer. Let’s find out, shall we?

 

Green popsicles

When I taught preschool in Ocean Beach, on hot summer afternoons we used to hand out popsicles to the kids. Of course, everyone wanted the freakin’ red ones and it used to cause all sorts of drama. The little buggers got all wise and crafty and would try to get a peep through the wrapper at what color was coming down before holding out their hands for one.

Of course, life’s not fair. Someone has to eat the green popsicle. I don’t know where it came from (Jenifer?) but someone came up with the mantra “You get what you get, and you don’t get upset.” Before we’d hand out the popsicles, we’d say this to the kids and for some reason it worked.

Thank you for your messages and love and support. I am coming to terms with the facts and I’m eating the green popsicle because it could always be worse. Like, no popsicle at all. Right?

Even though life sucks sometimes, we still get to watch train horn scare videos. Here is my favorite. It makes me laugh every time.

Giving up

If a door gets slammed in your face, you don’t just stand there staring at it. Staring at it isn’t going to make it open. You might look hard at it for a minute or two, then you walk away.

Two weeks ago when our surrogate went for her ultrasound, there was no detectable heart beat. “Maybe it’s too early,” they said. “Come back next week.”

Last week they found a heartbeat, but it was slower than it should have been. “Try again next week,” they said.

Tomorrow is “next week” but yesterday the doctor called and said that it will all be over soon.

Years of tears and money and shots and hope. It’s over and I’m not going to stand here staring at this closed door anymore.

“This is the day . . .”

I wouldn’t say I’m ‘religious’, but I grew up going to church every Sunday. In Scottsdale, our church was big and fancy and for me the high point was the after-services socializing which in the winter meant I could accidentally on purpose brush up against every woman I could find that was wearing a mink coat. So soft! That’s how I picked up my penchant for fur.

In the summer, going to church meant sitting in a rickety wooden pew in a tiny, simple chapel on a wide midwestern plain surrounded by fields of corn and soybeans and watching my grandmother’s legs work the pedals of the organ as she played the Common Doxology and a handful of farmers and I all sang along off-key.

When I got married I converted to Judaism, and I consider myself Jewish but since I have cancer, I’ll take a miracle from any God — Old Testament, or New, Jewish, Catholic, Protestant, whatever. One friend lit a candle for me at Lourdes last Christmas, and just last month another friend was planning a stop at Fatima so I made a candle for her to light for me there.

Sometime during the past month, when I was feeling super, super crappy, a random bible verse from my childhood became stuck in my head. “This is the day that the Lord has made; let us rejoice and be glad in it.” While I was curled up in the fetal position, wrapped up in coughing or puking or whatever terrible thing my body was doing, this thing was like a mantra on repeat over and over in my mind. I don’t know the context in which this phrase is actually used in the bible, but to me it means, “Suck it up and make the most of what you have.”

Yesterday Fireboy and I went out for a drive in the desert. We pulled over and he went poking around in the scrub while I sat in the car. I hung my arm out the open window and looked up at the sky and the red mountains. A cool breeze came out of nowhere and that phrase went through my mind again and I thought, “How does any of this even make sense?” and just then Brett came walking out of the desert with this in his hands.

mary

When I got home, I felt restless and uneasy. There’s so much uncertainty around me I often wish someone would take me by the hand like a child and tell me everything will be okay. I pulled out my computer and did a search for “random bible verse generator” and clicked the first link.

31,102 verses in the bible and this is what came up:

Screen Shot 2014-06-29 at 4.59.04 PM

unnamed

Back in Vegas, which is still trying to kill me. It’s definitely the air. I splurged on a Blueair purifier, and I do mean splurged, but dangit if the thing isn’t marvelous. Now I am a bubble girl, trapped in my bedroom. I have to wear a mask when I venture out, but I figure that’s okay because it camouflages wrinkles while providing sun protection. W-I-N-N-I-N-G.

Continue reading

Yesterday I watched the sunrise light up the fog over the Oakland hills. A cold breeze floated in though the open window. Today I woke up in Scottsdale. The sky was cloudless and the air conditioner made its empty nothing sounds. Since I left Vegas I’ve been staying in the homes of friends while they are away visiting places with tall trees or speaking in southern accents. I can feel these people I love around me in their candlesticks and books and dishes, and I sleep in their beds, but I don’t see them. It’s like everyone got raptured and I’m left to roam through their empty apartments.

When I was a little girl, I used to fantasize about being able to slip into people’s houses and rifle through their things because they were out, or sleeping or unable to see me because I was invisible thanks to a magic spell. In my imagination, I would stroll right on in through the front door and try on their clothes and read their grocery lists. Later, when I was a teenager I’d dream of being locked inside a fancy department store overnight – again, mostly just to try on clothes. God, I love clothes. Sorry, I digress.

My entire life is up in the air right now — where will I live? Am I going to live? Am I going to lose my hair? Where’s my genius doctor? Will I ever feel like my old self again? — I know that it’s only fitting that I’m spending this time in literal limbo alone, drifting through quiet and unfamiliar rooms and you’d think I’d be happy my childhood fantasy came true, but it turns out I liked it just fine in my own house. I already had everything I wanted and needed. More than any night turned loose in Neiman Marcus could give me.

Today at sunrise, Manchester and I took a walk through the wash. It was still cool and the desert animals and their sounds were all around us. Manc was scared, and stuck close to my side. As we were walking, I came across a shed snake skin. I picked it up and it was fresh and damp. When a snake outgrows its old self, it simply wriggles free and leaves the past behind. Snakes don’t cry because they’re changing. They don’t desperately, fearfully cling to their old skin. I don’t understand this transformation. I liked my self the way I used to be, but today I’ll take another lesson from the snake: maybe letting go shouldn’t be so hard, maybe if I let the past slip away gracefully, something new and beautiful will be revealed.

snakeskin

Continue reading