Tag Archive for 'chemo brain'

The Pinochle Brigade

November 12

Continuing my imitation of retirement, I went again to play pinochle with my Grandma and her friends today. Well, actually, I went so I could cream them at pinochle.

What? You think it’s a friendly game between the generations? A way to pass the afternoon hours? Think again, loser!

When I get a good card, I slam it down on the table and let out a “HOO-WAH,” and sit back with a sniff and glance around the table for approval. Seriously, I’m a big jerk. But it’s just a reaction to all the trash talk. I’m not kidding! Today one of the ladies (I won’t say who, but her name starts with “Josephine”) was like, “Hey Dave, do you need to go to a special camp or something to learn to play the game?” Oh, it was ON then. Last time I went, the dignified lady next to me distinctly let out a “…chicken…” when I quit bidding on a marginal hand. This is the only place I can hear the words, “Who dealt this? This is a crappy hand,” come out of my sweet Grandmother’s mouth. I love it.

In this particular room of pinochle players, there’s always the added obstacle of short term memory loss. This is something I’ve picked up since the start of chemo, so I’m really starting to feel right at home. Nevertheless, you know it’s bad when you’re in a room full of 80-year-olds and you’re the one drooling in the corner who’s forgotten his own name. Which suit is trump has to be reiterated every couple minutes during the game or we’d all just start roaming around, wondering, as you tend to in retirement communities, just how early you can line up for dinner outside the dining hall without looking too desperate.

What? Was I talking about something?

Anyway, I got schooled by the old folks today. ‘I got my ass handed to me,’ as an esteemed colleague of mine likes to say (I say “esteemed colleague,” because I can’t remember his “name”).

To those of my friends reading, I have been trying to teach you people how to play pinochle for years now. I want you all to learn so that I can beat you whenever I need a good laugh. Come on, don’t be a bunch of chickens. Do you need to go to a special camp?

Now I Buy Useless Things on Ebay

November 17

I bought a compass the other day on eBay. Ok, well, two compasses, actually. I wasn’t sure about the first one, so I figured I should get a second. I got outbid tonight on something that was billed as the “complete desktop recording system,” although now I’ll never be sure if it actually was. That one upset me, too, because I only lost it by $2.50. I mean, I could have paid another $2.50, come on!

I bought a spindle of CDs. And a ceiling fan for my tent. Not that I can use my tent for the next 9 months. Or a compass for that matter. And what on earth do I need a compass for? Do I look like Magellan? The pocket knife I bought will probably be useful, but I’m glad I asked my father to talk me out of buying the over-priced keyboard I was eyeing today. I have a keyboard. Two keyboards, in fact. Actually, I already own the same keyboard I was thinking about buying today.

I started to read the “Jeans Style Guide” on eBay just now, and I realized that it was for women’s jeans. But then I kept reading. It was about then that I realized that I have a problem.

Somewhere between getting cancer and getting really bored, I started surfing eBay again. I say “again” because I believe I’ve done this before, where I start to roam around eBay, buy a few useless things – sunglasses, spatula – and then realize what I’m doing.

This time, though, I really, truly, have nothing better to do that pick through the yard sale crap on eBay (i.e., check this gem out), so it’s especially alarming.

Today I got tired of staring at my computer, so I pulled on my shoes and draped my coat over my pajamas and drove my car to our mailbox (driving to my mailbox will make sense to those of you who know where I live). See, two packages had already come to the house, and neither of them were for me – specifically – neither of them were the new Victronox Swiss Army Knife Picnicker Edition #53652 pocket knife that I bought off eBay that I don’t need. So I thought I’d take a drive up to the mailbox to see if anything came for me.

I didn’t find anything from eBay, but I did find a few more doctor bills. *Not what I was looking for.*

So I came back to the house and surfed a bit more, and that’s when I started to bid on this “complete desktop recording system,” which I desperately do not need.

Mostly, like I said, I’m just still sort of bored. I had chemo on Monday, and here it is Wednesday, and I can’t really go very far without having to lay down, and I’m sort of tired of seeing the people on CSI solve EVERY case (wow they are good), and I can only lurk so much on my own website waiting for comments before it gets obsessive.

I have, however, come up with a bunch of things to do. When I’m done with this, I mean. First, I thought I’d backpack in Sierra Nevada this April. And then travel Europe again – no, make it South America this time – oh, and include a language immersion program in there so I learn to speak Spanish.

And I thought I’d record my own CD of piano music. I would have my own recital, too. It’s about time I did something like that anyway.

And if I do any of that backpacking stuff, I’m going to need a compass, right? (You don’t even know how to use a compass.) And a Victronox Swiss Army Knife Picnicker Edition #53652 pocket knife? (You could probably manage without.)

Well, anyway, if anybody is interested on how to find the right pair of women’s jeans on eBay, just let me know. I have the link right here.

Update: I just got this e-mail from the dude I bought the pocket knife from:

Hello,

I greatly apologize we have indentified a large inventory and shipping mistake that effects your order. Unfortunately your item is unavailable. I have refunded your money plus $5 for the waste of your time and I again I greatly apologize.

Thank you,
David Harris
www.ABCKnives.com

Besides being really lame, and besides the fact that I no longer get my Victronox Swiss Army Knife Picnicker Edition #53652 pocket knife – this means that I just made $5 by buying things I don’t need on eBay.

Will I Know When Chemo Brain Is Gone?

December 4

Its been a rough week. I tend not to mention things like that because it sounds like complaining. Somehow the words “pain” and “discomfort” sound like complaining no matter what other words you surround them with. But I’m not complaining.

I woke up on Thursday and I couldn’t feel the ring finger and pinky on my right hand. That was weird. They were all pins and needles like your legs get when you sit in one place too long. It would be a nuisance to most people, but for those few that make a living with their hands – like surgeons and, ahem, piano players – its more alarming.

I had a gig that day. I played in a trio for a local jazz choir concert. I played well, I think, but I missed a few notes up at the top – up where my fingers had been replaced with things that looked like fingers but felt like nothing.

The fingers weren’t really a problem, the problem was just keeping it together enough to perform. It had already been a long several days since the chemo struck me down on Monday. I hadn’t slept well, my muscles were empty and I couldn’t focus very long on anything worthwhile. It really took all my concentration to act normal during rehearsal and especially during the show. At one point I looked at the music and I thought, “Well shit, what do all these weird dots and lines mean?” Fortunately, that was only a passing thought, and by the time the song was counted off, I remembered how to read music and play the piano.

Here’s a funny one – right before the show this girl walked out onstage setting up chairs and my first thought was, “Wow, she’s hot.” A second later I realized that was my girlfriend (“Oh. Hey!”). So that one worked out really well for me.

Its not that I’m stupid, or amnesia-like, its just as if my brain needs a little de-fragmenting. All the information is disorganized inside my dome and it takes a while to untangle the cords and find what I’m looking for. It’s what my nurse calls “chemo brain”.

Sometimes I scratch my head and although I swear I’m scratching right where the itch is, I’m not hitting it at all. And I thought I saw a flash of light last night when I was laying in bed trying to sleep – at 3 am when all is still that there are *not* any flashing lights around. Weird.

My hopes are up that they might back down on some of the drugs when I tell them about the numb fingers. But what if they back off on the drugs and then the drugs don’t do the job?

And just how long am I going to have to walk around with this tangled brain? Sometimes I’m afraid I’m going to start hanging out with my cat because he’s suddenly so smart. (Note: Our cat, Charlie, likes to go outside so he can come back in so he can go outside so he can come in so he can go outside so he can…etc.) And how, exactly, will I know when I’m not dumb anymore? I know a lot of idiots that have no clue that they are. I’d tell them, but its considered rude.

I would have had a gig tonight, but it got all messed up. See, I’d slept about 2 hours the night before (I don’t know, maybe it was the flashing lights or our genius cat that kept me up). I’d had a rehearsal for a gig that morning, and when I came home I was just exhausted. I took a Tylenol PM to try to get a nap in, and then they lady called me. She said that the piano player for their Christmas party had just cancelled and they needed somebody quick. It’d be a 6 hour gig at my solo rate (extra points if you know my rate for solo work) – so you do the math. Let’s just say that would have netted me more in one night than I usually get in a whole month from other gigs. But her boss wanted to hear a recording first – so I gave her the address for the homepage and waited for her to call back.

And waited.

And waited.

And then I fell asleep. I can’t blame myself, I definitely needed it. But I missed the call, and by the time I woke up and called back, they’d already filled the spot with some other lucky schmoe. Damn.

Not that I would have lasted very well on a 6 hour gig. (That’s considered a reeeeally long gig in Cocktail Gigland. 6 hours is a long time to sit still in one position and move your fingers up and down.) But I would have done it! Damn.

Anyway, I’m going to go hang out with the cat.

I Should Make Up a Title But I Have Chemo Brain

April 6

I had another port flush this week. There are new people in the chemo center that I’ve never seen before. New people must come in all the time. Filling up the green recliners and drinking water from little, white, styrofoam cups.

I don’t know how the nurses and doctors manage to spend every day in that place. Don’t they ever start to feel like it’s all just too much? Don’t they ever want to leave all the disease and all the sadness in that place? Doesn’t it wear on them?

I don’t know. It felt good to be back there. I’ve had a hard time placing the emotion, but lately I’ve just been feeling…depressed. I can’t understand it. Spring it coming, and I’m working all the time, and I’m alive… I can’t understand why ending chemotherapy would be despressing. It isn’t. It couldn’t be. It shouldn’t.

I moved out this past week. I never intended to be living off my parents at age 25. It’s time I moved things along. I’m working all the time now, it’s possible, I should. I live in a nice house with an old friend and his dog. It’s close to work. I might buy a bike and take that to work as it gets warmer.

My room is a very serious green color that I’ve tried to tone down with stock artwork I bought at Target. The bathroom is a pallid, Easter-egg green that makes me want to go invest in a step ladder, paint brushes, and some other – any other – color. I tried to put up a towel rack the other day, but in the end, I just made two holes in the wall that I’ll have to putty up and paint as soon as I learn how to do that. Don’t make fun, I don’t even know how to spell spa-kel, let alone sand it.

Sometimes it just occurs to me that my life is being filled with more and more things I’m supposed to do, and less with things that feel right. People call that growing up, and I call those people quitters.

And it occurs to me that being surrounded by nurses and blankets and little, styrofoam cups filled with water felt, somehow, safer than being surrounded by Easter-green walls and holes where there should be a towel rack.

I can’t remember things very well. My nurse says that’s normal, a long-term side-effect of chemo. That it’ll probably get better. But that doesn’t help me find my car when I walk out the door with an arm full of groceries. And that doesn’t help me when the person picks up my phone call and I realize that I’ve forgotten who I was calling. Or that I need to bring a goddamn pencil with me to rehearsal, or listen to that CD, or do whatever else. I can’t remember. Sometimes I just want to sit down right in the middle of that big, stupid parking lot, with all my heavy groceries around me, and cry about how lousy it all is.

And then I think that I’m 25, and a man, and a cancer survivor, and people like me aren’t supposed to get upset. So I do what I’m supposed to do. And I wonder how I got here instead of somewhere else. And I can’t understand why life scares me now. I can’t understand why traveling doesn’t sound like fun anymore. Why I shouldn’t be at home, but I don’t feel like being in the green room, and I don’t want to be in chemo, but I feel better in the room with the cancer patients. But I shouldn’t. I shouldn’t.

Again – I don’t know. I remember having a plan before all this. Things I wanted to do, and places I still wanted to see. I meant to be on a beach right now. I meant to learn how to surf. I meant to live in another country. I meant to behave better, and look better, and eat better. And where, before, things all seemed so possible, now I just have to admire a guy that could have enough courage to dream up all that stuff.

It’s Spelled “Spackle”

April 7

It’s spelled “spackle”, for those of you keeping track, and if you get the right stuff, you don’t even have to sand it. There are no longer crevassed holes is the wall of my Easter bathroom.

But there is still a decided lack of towel rack.

Chemo Brain Stories

January 15

I met B. on a plane today from Toronto the Pittsburgh. I was heading home for a short break from our tour. Our plane had propellers. Turns out, I think I’m afraid of planes with propellers. I didn’t know they still made planes with propellers.

“They don’t,” was my father’s response when I finally arrived in Chicago this evening.

B. was traveling from Toronto to Boston to attend the funeral of a guy my age that, a few days ago, decided he didn’t want to live anymore. She was going to see her friend, the boy’s mother. As she said, “You don’t go to a funeral for the dead, you go for the living.”

B. was from Pakistan, spoke with a curried British accent, and carried little ginger candies from Trinidad with her. That’s about as Toronto as you can get I think. B. told me that the doctors had to put a metal valve in her heart that made her heartbeat sound like a ticking clock.

Tick-tock.

I told B. about cancer. Her sister died last year of cancer in Pakistan. Her sister was a nurse. A nurse who would get out of bed in the middle of the night to fix a patient’s catheter, but wouldn’t put herself in a car and drive to the doctor to check the lump in her abdomen. A little lump that caused a whole bunch of trouble.

Here’s a story about chemo brain I told B.

It was March, about 3 months after I finished chemotherapy. My brain was still oatmeal, and I couldn’t remember a thing. I was angry and frustrated all the time. I don’t exaggerate. It must have taken a great deal of pity and understanding for anybody to stay close to me during that time.

I got out of rehearsal late one night and – BAM! – I drove right into a huge pothole. Blew my tire nearly clear off the rim.

I pulled over and popped the trunk to get the spare out. In the dark, I couldn’t understand how to get the spare unlatched and out of the trunk. It took me twenty minutes of fumbling in the dark to get the tire out.

Already worn out and frustrated, but as yet unwilling to admit it, I jacked the car up and took off the tire. I put on the spare and unwound the jack. I stood up and looked over my shoulder and there it was.

The blown out tire. Still on the car.

See, I had changed the wrong tire. My brain was so wasted that I couldn’t even think straight long enough to change the right tire. It was awful. It was like that everyday, all day. One frustration after another. Names I couldn’t remember, times I’d forget. Sometimes I’d leave the house and drive straight to the store, get out, walk in – and realize I meant to drive to work. Not the store. So I’d walk out, and by then I would have forgotten where I parked the car.

Doesn’t that sound awful?

That night I jacked the car up again, put the good tire back on, jacked up the other side, took the busted tire off, put the spare on. I drove about 10 feet before realizing the spare was also flat.

I was so frustrated I could’ve pulled a whole tree out of the ground if I’d had any strength in me. In the end, my girlfriend came looking for me and we waited in the dark for a tow truck. She found me in a very foul mood.

“My cousin worked at a bank,” B. said, “but she hit her head in a bicycle accident and forgot everything. Total, permanent memory loss. She had to take a calculator to the grocery store.”

B. asked me if going through cancer changed how I felt about life and death.

My brother J. once told me a wise thing about death, when he was young and talking about something completely different. I was 16, and I was worried about going to take the driver’s license test at the DMV.

“Dave, just remember: everybody has to pass it. How hard can it be?” he said.

Which is true. Every driver driving out there on the roads had to pass the same test I was about to take. And even at 16, I’d seen some real idiots driving cars.

And I figure that death has got to be like that, too. No matter what you do in life, good or bad or in-between, everybody has to go through it. It can’t be so bad if everybody has to do it; if everybody before you has done it, and everybody after will need to do it, too.

“When my sister was laying in bed, the priest said, ‘Nobody comes here with a one-way ticket. We all gotta go back sometime.’” B. said.

We had the most interesting stories to tell each other!

(Actually, I think part of it was that B. saw me looking at those propellers over her shoulder and just wanted to keep me talking. She once worked as a flight attendant in Dubai.)

As for an afterlife…well, either something happens or nothing happens, I haven’t decided yet. Either way, it’ll probably be alright. I’d prefer something, myself. Maybe a beach and a bowl of ice cream. If there is one guy watching over everything, I surely doubt he’d send anybody to hell after seeing the kind of suffering that happens down here during life.

B. works at a medical office, but when she heard about her friend’s son in Boston, she left right away. She didn’t even talk to her boss. She left a message on the machine. She had an emergency and she’d be back in a week. She bought a ticket on a twin propeller aeroplane to Boston and high-tailed it out of Canada.

“I’m coming!” She said.

And she told me this:

“Do you know that smell, right after it rains?” She said.

“Yes.” I answered.

“That’s what God smells like.”