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Tuesday, November 27, 2012

Science Alert!

So today some science people said something I, and every other cancer patient in history, already knew: chemo messes with your brain zone.

Since starting chemo I've had SO. MUCH. TROUBLE. with things like word retrieval, short term memory, and ability to focus...


...but who cares, this is sparkly!

It's made it difficult to work, and kind of impossible to finish my book, which is completely infuriating. Basically I get mad and start to smash things but instead watch an episode of Dr. Phil. (For some reason when I typed that I wanted to write "Dr. Phil: Medicine Woman.")

So anyway, now they're all like, hey guys, this shit is REAL, and we're all like,


But seriously folks...it's kind of terrifying, the possibility that chemo is damaging my brain forever. Hopefully, the symptoms I'm experiencing will fade in the coming weeks and months. Matt suffered from chemo brain big time, and it did go away. (I think...? Sometimes it's hard to tell with him :-/ ) In the hierarchy of scary long term effects from chemo, this is number one, followed by hair never growing back (very rare, but fuck!), no period ever again, then heart damage (perhaps I should be more worried about this one).

Oh well, back to my regularly scheduled activity.



CHEMO JAMZ


Just replace "cocaine" with "chemo."

Monday, November 26, 2012

Chemo Door Buster Savings!

Clamoring for chemo

I prepared for a week beforehand: getting ultra hydrated, working out my IV arm with the grip squeeze-y thing-y, and taking countless vitamins.

They say for success on Black Friday, you need a plan. Do your research, and choose what you will get in advance. Don't give in to impulse buys. Stay focused.

I arrived early, de rigueur for Black Friday. There was a bit of a line, but not too bad. Mostly older ladies with pale cheeks and tell tale hats. I could take any of them down if need be.

I repeated a mantra: "Just get in, give the blood, get the drugs, and get the fuck out. Try not to get trampled."

I did not succumb to tempting offers of Adriamycin and Cytoxin, or Carboplatin and Taxotere. No one even slipped me a complementary Ativan. No problem though. I was focused.

The day wasn't without hiccups, of course. My veins were shy, despite my prepping, and it took a few tries to find them. They were sold out of size small rubber gloves in my area. Someone eating chicken soup stunk up the whole place. The nurse told me my nails are starting to fall out.

I won't know how successful my day was until I get the bill in a couple of weeks. The average cost is around $8,100. But I used my Frequent Visitor card...and isn't the tenth time usually free?


Number of needle sticks: 2
Number of drugs taken: 4
Number of minutes spent: 165

Monday, November 19, 2012

What is Real?


Today came on the heels of a rough few days. On Friday, I went to bed at 7:30 and didn't emerge until 4p on Saturday. I just felt like hiding. 

To continue the theme, I spent today puttering. I drank tea, watched Ricki Lake (she's back, people), and ate cheese. I squeezed in between Pancho and Toastie and tried to become one with the couch. (Inanimate objects have it made.)

I thought about ridiculous things, like the blue fairy from Pinocchio, the one who makes him a real boy. I spent a good chunk of the afternoon researching her.

I started feeling stiff, so I took a turn around the apartment for some exercise. There was a piece of paper on the floor, folded up, which I had been ignoring. I picked it up, unfolded it, and began to cry.

This is what it said:

   "What is REAL?" asked the Rabbit one day, when they were lying side by side near the nursery fender, before Nana came to tidy the room. "Does it mean having things that buzz inside you and a stick-out handle?"
   "Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real."
   "Does it hurt?" asked the Rabbit.
   "Sometimes," said the Skin Horse, for he was always truthful. "When you are Real you don't mind being hurt."
   "Does it happen all at once, like being wound up," he asked, "or bit by bit?"
   "It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand."
   "I suppose you are real?" said the Rabbit. And then he wished he had not said it, for he thought the  Skin Horse might be sensitive. But the Skin Horse only smiled.
   "The Boy's Uncle made me Real," he said. "That was a great many years ago; but once you are Real you can't become unreal again. It lasts for always."

This text, a section from The Velveteen Rabbit, was read by my beautiful sister Penelope at my and Matt's wedding in 2010. This paper is the print-out I gave her to read from. I have no idea how it wound up in the middle of the floor two years later, but as someone who's hair has been rubbed off, and who's joints feel loose, I'm so glad it did.


Sunday, November 18, 2012

Number 9

Taxol #9 on Friday made me think of Revolution 9, which always makes me think of this:

 
 

Arrived home from chemo to vomit (of unknown origin) on the floor. That about sums it up.

Number of needle sticks: 3
Number of my fingernails that look gross: 5
Times the smell emanating from Subway made me want to puke: 1

Ambien Thoughts, or things that pop into my head when sleeping pills are pulling me into the abyss.

"Rainbow sprinkles as potting soil. Possible?"

Saturday, November 10, 2012

The Fog

from Hedgehog in the Fog

While volunteering to the help the victims of Sandy this week, I got put in charge of expediting food deliveries, normally something I would be great at. I'm bossy, can be loud if necessary, and think well on my feet. But I made mistakes, duplicated some orders, forgot what I asked people to do. Volunteers came up to me saying, "I just talked to you..." and I would have no memory of them. The look on their faces, of bewilderment or frustration reminded me of my grandma and her slow decline into dementia.

I feel old now, creaky and slow. Hammering home that feeling is the fact that my ten year high school reunion is coming up in a few weeks. I'm not going. I would never have gone anyway, but still somehow I'm sad that I won't get to redeem myself Romy and Michelle style.


The only way I would ever be seen at that event is as cancer girl. One step above the kids that died in freak accidents. People would murmur sympathy, and back away slowly. Tragedy could be catching.

I imagine a version of myself in an alternate universe in which none of this shit happened. My Fulbright application would have been freshly turned in, thesis/novel draft nearing completion. Working for Fordham again, maybe auditing a class. Writing lots, maybe even making artwork, being in the studio tour. Drinking cocktails. Cooking. Reading books. Gardening.

I imagine myself other self, my evil (or good) twin, showing up at the reunion in a sexy yet understated black dress. Maybe I even already have an agent for my book. Matt is looking handsome, and has big story that's just come out in the paper. And I make a splash. I make high school my bitch, vindicating, erasing all the pain of those years with one night's success. And true to film the night culminates in something spectacular in a small way, like an amazing karaoke performance, after which I drop the mic on the stage and yell "Lemon OUT!" and stalk away. And I never think of high school or this night again because it is just that complete.

As my other self, I win one for the weirdos.

The escape, though momentarily delicious, is incomplete. Even in my head, I can't picture myself as anything but bald.

Chemo number: 8/12
Number of needle sticks: 2
Number of stares I got sitting in the chair: at least 4

Thursday, November 8, 2012

Monday, November 5, 2012

Recovery

Chemo moved to Saturday, and uptown where there was power. Spent today, Monday, packing bags of relief supplies for victims of Sandy in Jersey City for Jersey City Sandy Recovery. 


The need is great and constant. I'm in awe of the generosity of the donors, and the beautiful energy of the volunteers. Much of what they do is back breaking work, and many are victims of the storm themselves, returning home to no light and no heat. If you can give a half an hour of time, or a loaf of bread, or a blanket, please do, and know that it's appreciated.

We were without power and heat for three nights. That's all. When I say it now, it seems like nothing, but in the middle of it I was really freaking out. The day after it came back I cried, inexplicably, all day.

Chemo number: 7/12
Number of needle sticks: 1
Red blood cell count: 3.85