Friday, February 18, 2011

Day 288: Almost Normal

This has been a week of change in many ways. A change of pace, a change of scenery, and a change, or several of them, in me. I'm writing this from the north woods of Wisconsin, the only place we ever go on vacation anymore, and a place we haven't been to since the beginning of July. That means that the last time I was here, I had hair--lots of it, and I was a few days away from my first chemo treatment and I was terrified. It was summer, we went swimming, I had a tough time finding a bathing suit that didn't make my left breast ache so soon after my two surgeries, and Augie had just started walking.

Things have changed. It's winter, and even though we had a great thaw (60 degrees in Chicago yesterday, I'm told, though we missed it) to follow our great snow, word never got out up here that spring had arrived. Yesterday it was as warm as we could have hoped it would be, somewhere in the mid-forties. We got up here in record time--less than 6.5 hours, after stopping to eat and stopping for bathroom/diaper breaks--because Gabe thought we would be able to see the arora borealis. It turned out that the original predictions were off by a day, so they were visible last night instead of Wednesday night. It was so foggy yesterday that I could hardly see as I walked down the road that would have been pure mud if it wasn't pure ice. But then the fog cleared, and we kept looking for the lights, but the moon was so big and so bright that we couldn't see anything else.

I love the darkness here, and the stillness. I love how there is nothing to do, and everything is far away. No one is up here in February, so my walks become entirely different than they are at home. It's just me, and I don't run into anyone, or see any cars, or need to stop at traffic lights. There is no sound, except ice cracking on the lake if you get close enough. Tonight we parked the car right on Lake Lucerne so we could watch the moon rise over the water. It was the largest, brightest moon I have ever seen. It was so magnificent that young boys left the bar and walked out onto the pier to watch it too. Augie shouted "moon!" on the long drive home and Lenny said she liked when the moon went behind the trees because it looked like the tree branches were drawn on the moon itself.

So it's winter, and that is different. And I don't have much hair. Augie runs around like a madman, and he has just learned how to jump with both feet. The memory of him teetering around gingerly is as far away as the memory of me as a young mother with her whole life ahead of her, unafraid of the future. Lenny reads silently to herself in the car, until she pauses when we discuss going to our favorite restaurant on Lake Lucerne and she asks, "was the last time we were there before we knew you had cancer?" Oh my child. Don't let me forget that you haven't forgotten. What is there to say? Yes, you stayed home with Grandma when we went last summer so the last time you were here was before we knew I had cancer. OK, right, she said. These conversations are different than what I imagined discussing with my not-quite 5 year old. Moreover, my cancer treatment is, hopefully, or at least for now, behind me, rather than looming ahead of me. I have lost the things I was going to lose due to chemo, except for the fear of losing them again.

Because things have changed. After my breast felt like it caught fire 10 days ago, I started to notice that things were different in me. I didn't want to say anything aloud because I didn't want to jinx it, but my hot flashes started to diminish in quantity very rapidly. Then a day went by when I didn't have any at all. It happened just like that. Other things have started to return to normal as well. I feel my old sexuality coming back. All of a sudden, after being afraid I would be stuck in some kind of damaged body forever, I am almost at the same level of sexual function and desire as I was before chemo. I am not exactly like I was, but almost.

How did this happen, in the blink of an eye? I was desperate with hot flashes, depressed about my sex life, hating my hair, and now...things are coming back together. This is where you realize what a big gap there is between normal and almost normal, however. Nothing is as it was. And yet it's close enough that I just can't imagine having to go back and lose it all again, or worse, find out that my back pain really is something else and enter into a new abyss of advanced cancer treatment. I remember writing about the Flowers for Algernon effect when I was doing chemo. I feel like that now. I can feel myself coming back, my body coming back, and I think, how dare you try to take that away from me!

That's what I am thinking about now, how things are all of a sudden almost normal, which shows that they are not really normal at all. When things are normal, you don't think about them. You just live your life. I hate thinking that consciousness, that deliberate thought, is a sign of difference, and yet it seems to me that it is.

I had an experience last weekend that brought all of this home for me, and part of me wants to write about it, and another part of me knows that I will not be able to express what I want to say well enough and the whole thing will sound ridiculous. I will give the short version, and see what I can make of it. The gist is that while out on a girls night, a very drunk guy was flirting with all of us, and seemed interested in me in particular. He gave me his number, tried to take me away from the table, told me how pretty I was, what I great smile and a nice face I had, and all of that. I am not a fan of being hit on in bars, but the way this whole thing happened and the bizarre things he said to every one of us was entertaining. He told one of my friends later that he really wanted to talk to me, so I decided to talk to him right before we left. He asked, where do you want to go? Right here, by the door. Are you sure? I won't hurt you or anything, do you want to go somewhere else? No. OK. So he took my hands and looked at me and said, I know about your illness. I understand. My dad is going through this right now with non-Hodgkins lymphoma.

He said a lot of things. How he could look into my eyes and see my struggle and that's how he knew. That I was so beautiful, and he took my hair in his hands and said, and I love this. That I was a fighter, that it was something you really had to power through and you had to be strong, that his dad had been a fireman for 30 years and this is the hardest thing he had ever done and people don't understand.

Since I am writing it, I must remember it. But after he said the word "illness," it was like he was talking to me through a cloud. Here I thought I looked normal enough to "pass," that a guy might actually see me and think "she looks pretty good, " not, she looks pretty good...for a bald lady, for someone with cancer, for a sick person. But no, he needed to talk to me about cancer and bare his soul to me in that drunken way when people tell you personal things they would never tell you if they were sober. My friends were standing an arm's length away and didn't hear the conversation through the din, and I thought of keeping it to myself. I told them though, and I told Gabe the whole story when I got home. He said one thing that made me feel better. Something along the lines of, well, either way, whatever his intentions, he noticed you. People notice you and take an interest in you. There are worse things.

I wanted to run away from myself right then in that bar, from this cancer girl that I have apparently become. I have decided to tell myself that there were two things happening there--he was attracted to me in the first place, and then he figured out I had cancer. I want to believe that it wasn't obvious right from the beginning, that there is no red C on my forehead marking me for life. This might sound funny coming from me, the girl who walked around bald as a cue ball for five months, who never bothered to wear wigs and who only drew on eyebrows for a particularly bad two week stretch sometime in December. I never tried to hide cancer, or chemo. If people ask me about it I tell them. When we have a sub at the gym who doesn't know my limitations I tell them I can't do certain things with my arm or my chest. The male sub has never asked, but one of the women did, and I said breast cancer, and she looked at me with that look and didn't say a word. But after hearing that word Illness I felt so unlike myself that I didn't say hardly anything. I just let him talk at me, and I wanted to say, what if you had been wrong? And then I wanted to say, one of the only things about my appearance that hasn't changed from this is my eyes, and if you see struggle there, it was there before cancer. In the end I didn't say much though, and I acted like someone else.

I am that woman, and I was always that girl, who doesn't trust strangers, and I never let them near me. I have never in my life given my number to a stranger, except once when I was 14 years old and the 16-year old usher at a movie theater asked for it. And of course I didn't give this guy my number, but I let him touch me, touch my face and my hair and kiss my forehead. That is not me. I've been known to smack my own husband if I don't want to be messed with right then. I was just kind of lost in the absurdity, all over again, so I stood there. I've never had an experience where I received so many compliments--some that were normal, the kind that men give women when they are attracted to them, some that were much deeper--and felt so sad about it afterwards.

I guess that story isn't so short. I might regret putting that out into the ether, because I feel like I'm admitting to being some kind of freak at the same time that I sound vain and petty, but then again, I have always contended that I would keep it real here in cyberspace, so there it is. Every time I think I am going to have a normal experience, there is something there that says, not so fast. You have CANCER, remember? And it makes me tired. That is what scares me about getting things back--my hair, my sexual mojo, my ability to sleep without hot flashes. Even the things that are normal are reminders, because you just cross your fingers hoping you get to keep them for just a little while at least. I wrote once that I live my life constantly feeling like I am driving the getaway car. I am waiting for my real life to catch me, so I have to love these moments of relative health and normalcy while I can.

Sometimes when I am being hopeful I think about growing old. Specifically, I think about how much I always thought I would like being old. I will never, ever, believe that cancer or any of the other trials in my life happened for a "Reason," and yet sometimes I do believe that I should get to be old, just because I might be prepared for it. It's as if my body wanted to tell me what it would be like: Someday, you might not be able to walk, or go to the bathroom by yourself, or turn your own body on your bed. This is what that feels like. Someday, your brain might misfire, and the electric wires will get crossed, and the wrong things will happen. This is what that feels like. Someday you will have so many hot flashes that you can't sleep for more than an hour a night. This is what that feels like. Someday your hair will thin and fall out. This is what that feels like. Someday, sex will be something that other people think about, that other people can do easily. This is what that feels like. Someday strange men will compliment you for your strength of character and you will be able to let them touch you because you are so far removed from the normal sphere of attraction. This is what that feels like. Someday, you will have a terminal disease, or an illness serious enough that death is right there in the middle distance. This is what that feels like.

And how exactly does it feel? Somehow it is not all bad, but it is sobering. Older people are so aware of their bodies and what they can and can't do anymore. Perhaps I have been given all these glimpses into old age because my body knew it would never have a chance to get there. Perhaps I will get there. I would like to--I would like to put some of this knowledge to use. I would also like to play a lot of solitaire, and wear mis-matching clothes, and give men compliments the same way I give women compliments without worrying about it, and I would like to call my kids and grandkids who haven't talked to me in a while, and shout at my husband who can't hear me anymore, and go to water aerobics and smile at the young girl who just lost her hair to cancer treatment and showed up at the pool anyway, smile and ask her about her baby, tell her there is something else afterwards that is almost normal, run as fast as the water's resistance will let my aged body and tell her, yes, I know what that feels like.

1 comment:

  1. I've seen the aurora borealis 3 times in my life. It was something I had on my bucket list in high school, although at the time I didn't know that's what the shorthand term for "list of things I want to see and do before I die" was. Luckily, we've seen the aurora together already from our back yard, but before the kids were born.

    Never in my life have I spent such time with people who consistently draw comment from passersby. Even with short hair, Katy, people will still tell you that they like the cut. Yet it isn't cut - it's just newly grown... even the lady at Double Bucks restaurant up north notices the style; but she doesn't ask why, and she's not a drunk hitting on you at a bar! I'm glad to be the invisible one. But I know also that you just want to be normal again, to live without the fear of cancer and an early demise, and all I can reassure you is that you will get through all of this and still be the same beautiful woman I met and instantly knew I would likely never meet another woman smarter, funnier, better natured, and more sensible than you.

    It's funny - 8 months ago we were here: and 8 years ago we'd just met. So how long we've known each other were a year then it's just been a really lousy month. I think I'm going to have some angst when we get to play in the yard this summer as I think about the summer we mostly missed last year. But as you heal from surgery, chemo, and radiation's scars we'll just have to hope this new normal's not so far from where things left off and that the road ahead of us stretches on up to the moon and the stars beyond.