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Thursday, September 15, 2016

You Look Marvelous

And you press on God's waiter your last dime 
As he hands you the bill
And you spin in the slipstream 
Tideless, unreasoning 
Paddle right out of the mess
And you paddle right out of the mess
-- Ian Anderson

Surely one of the best ways to irritate me is to say, "You look great!" or, "You look good!" And so on. Why is this irritating? Read on.

Even surviving kidney failure or Multiple Myeloma you might in fact look good and normal on the outside. Problem is, your insides are screwed up and you are in fact not doing so well, and you don't feel well quite a lot of the time. Doing as well as expected, I suppose, but let's fact it, not so well in the scheme of things. I feel blessed to look good; but my insides are still messed up and my prospects are not so great.

Most people don't see my weekly or monthly lab results. Nor do they see me on my bad days: the ones after chemo when I haven't showered or combed my hair and I look pale and sickly. I do not look so good, but I spend some or all of the day in bed or by myself, no-one sees.

Most people's sampling is skewed, as they say. People see me on my better days only, when I'm chipper and looking good.

It creates disconnects even within my family. My son sees me up and around and suspects I'm just being lazy when I don't want to mow the lawn, for example. I can do it, yes, but I don't want to? Why? You Look Good. With a hemoglobin value of 9.5 or 8.7 (the low end of normal is 13.5) even going to the end of the driveway and back to get the mail is enough to get my heat rate over 120. Walking upstairs? Same thing. Maybe try mowing your lawn with only one nostril to breathe. I can get a really good aerobic workout just by walking around the block. Another weird thing is I don't sweat as much as I used to, I don't know why. Why do some athletes train at altitude or with 'breathing masks'? To deprive their body of oxygen; as if their hemoglobin was lower than it really is.

And at work? I seem normal so why would I get such special treatment to, say, work at home? Well, no-one sees that you have to go to bed at 9:30p just to get up at 7:30a to get to work by 9. Seems simple, but any more my time is precious and even an hour lost in traffic during the day is a big deal. I eat at my desk for breakfast and lunch. If I'm lucky I spend my lunch catching up on personal e-mails, or going to appointments, or scheduling appointments or chasing insurance issues; and I might even get a shower.

Lots of days I go to work after lunch, driving in during the lunch hour. When I get there, I look good; but I feel like I've wasted time getting there and back; I could have gotten so much done otherwise. I avoid being at work on the bad days, but do my best at home.

I used to never give it a second thought, who would; it's just something you say to someone, if you know they're going through a tough time, and even if they don't look so good, you're apt to say they do.

It seems cruel to say to your friend, "Man, you look like shit." But I never wanted friends who couldn't say it.

This is part of my puzzle of survivor-ship. I didn't die, but I disappeared from the scene for a year or more, and my life isn't the same. Much like my death, though, people take it in, grieve if they need to, and then move on. Problem is, now I'm left back here alive, trying to catch up, to become relevant again even among my circle of friends and at work.

I didn't die physically, but somehow I died socially.

Friends ask you to do stuff, but if it falls at one of the bad times you say no thanks. This happens a few times and eventually you're shuffled back out of mind; or they want to spare you from having to say no thanks all the time. When you say yes, at first it's a really big deal, and some people make it so by pointing out just how touching and big it is you could make it. I find this irritating: don't make things about me. I went through some shit you don't want to go through, but I'm no hero. And for my friends, please keep asking. I'm not declining for a petty reason; I may look good, but often I don't feel good.

It's like PTSD, but the war's still going on. It's not over. It's never over; there's no ocean to fly back over to get away. How do we go back home, deal with it, and heal and move on? Myeloma picks at all the scabs, all the time.

I always ask people how they're doing or how they're feeling if I know they're going through a hard medical situation. Any judgement I have about how they look is kept to myself, because I know this can change day to day, and it's really irrelevant. And they might be sensitive to it; cancer can make you feel strange about how you look.

So, now that you've read this, I kindly say: do not tell me I look good. I don't care if I look good or not. I'd rather you ask me how I'm doing or how I'm feeling.

Monday, September 12, 2016

Chemo Concerts

The phenomenon of Chemo Brain is well known among cancer patients, at least to a lot of us. You can read about it here, as one point of data.

I have a raft of other things going on that can cause mental glitches, like anemia, tiredness, low blood counts, stress. It can make my work life difficult; being a software engineer requires constant problem solving, multi-tasking, and a lot of tasks not really related to software. However, after my chemo treatments, which come every other week, chemo brain definitely gets worse.

When I tell people about my inability to recall names or things that happened recently, some say, "well, you are almost 50, you know." Yeah, there is that too.

Whether you believe "chemo brain" is real or not, I'm asserting it is. It's simple to my mind: if you don't believe it, come with me some time and try it yourself. Whether it's caused by the chemo, I don't know, but it's correlated. What does that mean, am I not splitting hairs? No. It is important, and you can learn more here.

How do I know it's real? I've been doing chemo treatments for almost two years now, and I've settled into a routine. After every one these symptoms get worse for a few days, then dies down.

One of the weird things I often do after chemo is listen to loud music. The louder the better. My family just shakes their heads, closes my office door and leaves me alone for a while. I like a lot of different music (as I've said before), but during this time I want to hear load, driving, heavy-metal kind of music.

I don't think it's to drown out the depression, but I have a strange sensation to listen to my music all at once. Almost like one song going into my ears isn't enough. Strange, but true. This sensation lasts for hours then goes away, to the relief of my family I'm sure. I've since gotten a decent headphone setup to avoid blasting them out at night.

I don't always feel this way, sometimes I just feel ill. I don't understand this, because theoretically it's the same medicine given by the same people to the the same person every time, right? But sometimes it's party-on-Garth time. Crank it up to 11. This is your brain; this is your brain on chemo. And so on.