The five minute freak out

present

Ugh, it’s scan time again. Usually in the weeks leading up to scans, the voice in my head will spend a good part of the day (and most of the hours when I should be sleeping) imagining and narrating all the potential outcomes of these tests and just generally winding me up into a hysterical pitch.

Not this time.

This time I’m armed with a Cognitive Behavior Therapy tool which I have catchily dubbed The Five Minute Freak Out.

A nice therapist I work with sometimes thought it might be useful in managing the stress around my upcoming scans and I honestly don’t know what it’s really called, or if it even has a name—but it works like this:

Whenever I have a thought related to my scans or their results, oh—say something along the lines of, “I bet I’m going to find out that everything’s worse. It’s probably going to be terrible news. Oh my God, my pinky feels weird. I bet I have mets in my pinky. Ow, my pinky hurts. It didn’t hurt yesterday. Yep. My scans are definitely going to show that I have cancer in my pinky now. Oh my poor, poor pinky finger. WHY, GOD? WHY?”

— Rather than slip sliding into that somehow satisfying yet terrible whirlpool of conjecture, I stop that thought cold, and say to myself, “Self, you stop it right now. It’s not time to think about that. I am not going to think about my scans until X o’clock.”  The idea being that my scaredy cat subconscious will pipe down once it is assured that it will have a platform from which to broadcast its hysterics.

So, at the appointed time each day (in my case, a time when I am alone and not wearing mascara) I allow myself exactly FIVE MINUTES to freak the fuck out. I let my mind run wild. From the morbid, not-even-remotely-grounded-in-reality potentialities to the much more likely—I set the timer and I set my mind free.

Five long minutes later, I wipe the snot off my chin, dry my eyes and switch mental gears from negative— to neutral statements. It’s not as easy as imagining the worst case scenario,  but I force myself to ponder a few reasonable thoughts such as, “There’s no possible way for me to know for sure what is going on inside my body. I will find out only when my doctor gives me the results.” I roll those around the echo chamber for a bit and then finish off with a grand finale of of pie-in-the-sky positive daydreams, such as, “These drugs are working like a charm! I am kicking cancer’s ass!” Because, why not?

And that’s it. While I might be using it to cope with scans, I’ve been told that anyone could use this strategy to train their brain to deal with all sorts of unwanted recurring thoughts. I’ve only been at it a few days, but I can honestly say it works. Somehow, I find my inner alarmist piping up less and less often, content to cram a whole day’s worry into five sweeps of the second hand; leaving me 23 hours and fifty-odd minutes to actually enjoy the here and now. Which is all any of us really have, anyway.

 

 

A post about my butt

mirror

I am envious of women coming of age in the world during these times. Today, there are flat irons to tame unruly tresses and bodacious booties are all the rage. Back in my day, we walked around with horrible, puffy hair and wore baggy clothes—tying sweatshirts around our waists in an attempt to camouflage our curves. The beauty icons of my formative years were The Heathers (Thomas and Locklear) scrawny, no-butt runts by today’s Twerk Queen standards.

That said, I’m not gonna lie—when I first started losing weight (before I realized the cancer was getting out of control) I was stoked. While I had never exactly been heavy, I definitely had never been model-thin. The loss of the first fifteen pounds coincided with a trip to Cabo where, for the first time in my life, I felt pleased with my figure and pranced around shamelessly, wearing nothing but a tiny emerald green bikini the entire week.

As the pounds continued to melt away, I watched first with awe and then a growing terror as my thigh gap became a chasm and my once pleasantly plump arms morphed into matchsticks. I discovered bones I never knew I had in my collarbone and coccyx and made sure that when leaving the house, my clothing covered every inch of my body. I began longing for the days when I could sit in a bathtub without wincing in pain from my bones clanking against the porcelain and began to ogle other women, comparing my emaciated form to their juicy, healthy shapes. Before I knew it, I had traversed the body shame spectrum in its entirety—from “flab” to fragile.

Last weekend Fireboy and I hit the mall. He’s a fit dude, a runner; so I trailed him into Lululemon, where he browsed for shorts while I slouched around the sale rack, desperately avoiding eye contact with the totally ripped Bikrim devotee pacing the sales floor in a bra top and spandex pants.

There was actually a pretty decent sale going on, and while I don’t work out, I do love to buy clothes. Because I had no idea what my current size was, I took my find (waffle knit sweater pants) to the fitting room.

A perky blonde screamed, “Let me know if you need any help” into my face and scrawled my name on the dressing room door.

Now, while I am feeling much better these days and am no longer dragging an oxygen tank everywhere I go, I do get tired quickly and find it hard to get dressed while on my feet. Thankfully, there was a small stool in the dressing room so I sat down and pulled off my jeans.

I maneuvered my feet into both legs of the sweater pants and reached for the waistband. My plan was to pull up the pants as I was standing—in one fluid, energy-conserving motion.

Then it happened.

I saw my ass in the mirror.

Wait. Was that really mine?  My wonderful, happy American Girl Ass had been replaced. What I saw in the mirror was the rear end of a 75 year-old man wearing a thong. Or was it a dehydrated peach? Reeling with the shock of it all, I tried to sit back down, but the pants around my knees sent me and the stool clattering to the floor. “Is everything okay in there?” chirped the salesgirl. I could see her feet under the door. Oh my lord! What if she uses her key and opens the door? WHAT IF EVERYONE IN LULULEMON SEES MY OLD MAN ASS?

Scrabbling around on my hands and knees groping for my jeans while kicking the sweater pants off my feet, I tried to choke out a nonchalant grunt in reply. Once I got back into a standing position, I pressed my back up against the dressing room wall as though I were standing on the ledge of a fifty story building and somehow managed to get back into my jeans without bending either leg. Successfully avoiding another confrontation with the monstrosity in the mirror, I casually sauntered out of the demolished dressing room, smoothing my hair and straightening my glasses as I walked past the very confused sales clerk.

“Find anything?” asked Fireboy, seeming not to notice how sweaty, pale and breathless I was.

“Yeah. I’m going to get these pants.”

 

 

Dark places

this is you

Fireboy showed me an email this morning on his phone that he’d gotten from a really nice person we’d met during our time in Las Vegas. It said, in part, to tell me, “my sister used to read her blog.”

I thought hey, that’s nice but also mean? Because of the past tense. Like, “I used to like Count Chocula but I don’t any more.”

I must have had a weird look on my face, because then he said, “You know her sister died, right?”

No, I didn’t know that. He looked at me silently for a few beats waiting for me to puzzle it out, but I’m slow. “She had breast cancer.” he said.

I looked past him out the window where a hummingbird was doing all sorts of crazy loops around the patio. The sky was blue and the mountain was purple and it was all swimming and blurry because my eyes were filled up with tears.

The idea that someone else with cancer would stumble across this thing had never crossed my mind. I wish I would have known. I wish I would have known her. Yesterday a social worker said to me “You’ve been in dark places” and I cried with relief that someone said it out loud. If you have breast cancer and you are reading this, we should be friends. I know you have seen some dark places too. Maybe we could borrow each other’s flashlights. My email is laurel.may(at)gmail(dot)com.

 

won’t make it to the shore without your light

One lingering after effect of spending the majority of the early oughts in nightclubs is the insatiable thirst I developed for anthemic trance and house music. It’s a weakness I indulge in secretly, mostly because when I play that kind of music around other people they usually say, “Ew, turn that off!”

Yesterday was insemination day. I know, I know . . . I said I gave up. The problem is, if I give up on one thing, the next thing you know I’ll have given up on everything and then I’ll be eating Jack in the Box curly fries in bed in the dark watching showmercials and waiting to die. Giving up on any one thing just isn’t an option. Anyway, it isn’t my egg this time. Not my egg, but if it works  — it’ll be my baby just the same. Coincidentally, yesterday also happened to be chemo day. Drip, drip and meanwhile, nearly 800 miles away, a different sort of infusion was underway.

So anyway, as I was saying, for me there’s a dance floor banger to suit every occasion — even this roller coaster ride of IVF and surrogates and donors and sperm and tears. We got a new car last month. A really fast one. After my chemo, I wheeled my little oxygen tank into the parking garage. I put that sucker in the trunk and put myself in the drivers’ seat. As I pulled out onto the road, I rolled down the windows, opened the sunroof and put the pedal down. I pushed play and turned my song up as loud as it would go. I felt the wind whipping though my hair and I was flying and I felt so alive I could taste it. Go! Firebaby, go!

 

 

 

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 ftw

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.