The Ghost and The Shadow

I've finally made myself comfortable enough to nestle down and post a blog for you (blog a post for you?). I was cold, so I put on a hat. When my bald head gets cold, the rest of me is cold. I now wear a nightcap to bed most nights! (Usually I would have another sort of nightcap... *wink*) I put on a fleece to help warm me up. I am wearing the fuzzy Halloween socks Janet gave me for my birthday, and my slippers are sealing in the warmth to my tootsies. I just microwaved some hot water for a cup of green tea (which has mint in it, unfortunately, but maybe it'll be good anyway... don't especially care for minty tea).

Anecdotal Interruption: The green tea came from my Chemo Angel. I signed up for this program called "Chemo Angels," in which unfamiliar volunteers get matched to people going through chemotherapy treatment. They write letters and give little presents. I thought, "If I have to have chemo, then I may as well get some free stuff out of it." Yeah. Working the system.

Anyway, now that I'm comfy (although I'm going to have to squeeze this tea bag out after it's done steeping), I thought I'd like to share with you, and simultaneously record for me, what it feels like to go through chemo. To me, at least.

I know I described before that chemo felt like the worst hangover you've ever had, and that it doesn't relent for three to four days. While that is a somewhat accurate description, I'd like to get more specific.

For one, I should note that weekly Taxol and triweekly FEC are two totally different cats. Weekly Taxol is like our house cat Lola; kind of annoying, tiring and a bit of a nuisance. FEC is more like a feral, starving and rabid big game cat. It consumes you almost immediately and entirely, and then ravages you until you feel like you have nothing left. In other words, Taxol was "easy" chemo and FEC is... not easy.

Another difference is that Taxol left me in a constant state of "so-so." I would have extra-tired days and then I would have regular-tired days. I was functioning at maybe 65-80% at all times. With FEC, the first few days I'm at maybe a 20%, but that number goes up gradually and continually until I'd say I'm about 90% or more. Hard to say because I have a feeling I'm really out of shape, so that makes a difference.

So what's this about The Ghost and The Shadow? Well, it's my very literary (yes, I'm literary now) way of describing how FEC makes me feel. There are two aspects, naturally: The Ghost and The Shadow.

The Ghost is a feeling. It's not something tangible; it's more like a diaphanous entity that clings to me and won't leave until all the FEC seems to be out of my system. The Ghost is a lingering sensation that things are not right. It's an all-over feeling, but it mostly resides in my head (not in a psychobabble way, more akin to a headache). The Ghost makes me feel like no matter what I'm doing, I don't want to be doing it, and if I were to do something else, I wouldn't want to be doing that either. It's a restless feeling, a feeling that nothing is or feels right or good, and nothing can be done to change that fact.

When it gets almost unbearable, it's a feeling that I know I need to sleep but I'm tired and bored of sleeping, yet don't have the energy to do anything else. So I lie on the couch or in my bed like a lump until it's an acceptable time to take a pill to make me sleepy again. Everything becomes a chore, from getting up to go to the bathroom to trying to eat something. To changing the channel on the TV, to propping up a pillow. When I'm really sick, I can hardly move and I just sleep through The Ghost. But once I start coming back to myself, I feel like I can't hold still; that if I just do the right thing I will feel better. It's a feeling of struggle, as if I could work through it somehow but just can't seem to make it go away.

The Shadow, on the other hand, is how I would describe what I become. I am no longer Carrie in the typical sense, but a shadow of Carrie. The same shape, size and approximate image of Carrie, just fainter. Weaker. Becoming The Shadow breaks my life down into very small bits-- bits that are manageable to my strength at the time. If I am strong enough, I'll go to breakfast. If I need to go to the doctor's office, I go to the doctor's office. I do very few things I don't HAVE to do, and I perform only the mandatory tasks.

As The Shadow, my mood and thoughts get very dark and gloomy. When I feel sick, I just can't help but only see the negative side of things and feel hopeless. I think that's a natural reaction to feeling like sludge. When I am The Shadow, I get the increasing feeling that it is not humanly possible for me to live a full and long life without getting cancer again. I realize that many people beat cancer once only to have it come back to kill them. I think about the women living with metastatic disease with no end date for treatment in sight. I wonder whether I have the strength to fight this disease again. I consider that they say if I live another 5 or 7 years (not clear which is the magic number), then I can rest easy, that I can call myself "cured." But then I realize that dying in 5 to 7 years is really pretty soon, too soon. I wonder if I'll ever feel better, and if I don't, what I will do. How much is your life worth when you feel like crap? Like I said, my thoughts get very dark. I even asked my poor sister on my worst day, "Do you think I'll live very long?" Unfair question, and I hope I didn't scare or creep the hell out of her. But when you feel that miserable, it's hard to feel like you're going to live forever.

The Shadow has forced me to start thinking about my own mortality. I think most people my age are still in the "I'm gonna live forever" mentality. I wouldn't say I'm staring Death in the face and trying to see who will flinch first. I'm just realizing more that maybe I won't live to be 75. Or 50. It's scary, so I don't think about it that deeply (at least not yet) but the questions having to do with my future supply variable answers depending on just how long that future might be.

Sometimes I still feel like I'm gonna live forever though. So don't get too worried. It's just that the major fallacy that has come to define me-- "You're really so healthy, except you have cancer"-- mixes things up considerably.

DISCLAIMER: I hope that this post didn't freak you out or make you think I'm all Death And Doom all the time. I just wanted to share what chemo is like for me, and to have it written down for me sometime later, when all this is just a bad phase I went through in my twenties.