Thursday, January 27, 2011

Day 266: Emily Dickinson's Chicken

I really needed to write this blog last night, when I was feeling down and depressed about this whole cancer nonsense. But I was feeling, well, depressed, so I didn't want to sit down at the computer and get deeper into my thoughts. Instead, I am sitting here writing this today, and while my mood is not chipper (though I have never been chipper, right?) the day was better and I am farther away from that place I visited yesterday.

The short depression was precipitated by the fact that my hips have been just killing me recently. I mean, it's hard to sleep, I bought some aspirin--something I never take, but the only thing that works--and pilates has been tough. I wanted so badly to ignore it and just suffer through it, mostly because the pain was like a jackhammer to my brain, telling me:

"Bone cancer."

I confessed my fears to Gabe last night and he said, well, what should we do about it? I had an even bigger confession to make. I told him, I can't deal with doing anything about it right now. I felt so guilty saying that, admitting that I just need to either assume it's the old wound or be in denial because I can't face the idea of having a metastasis that would leave me with only a few years to live. I am always the one who faces everything and just does what needs to be done. This time, I am so genuinely afraid of what I could learn that I want to enjoy this short time I've had since treatment ended. It's only been 6 weeks. I need more time than that!

The reality is, I think it's rowing that is doing this to me. I've only done the erg twice, and for the few days following each time my hips were just a disaster. I don't think I have the form right, and we don't really stretch after practice. I'm still working out in the gym and not stretching enough. In a normal life, or maybe not a normal one since it's me, but one that took place before May 4, 2010, I would just suffer through this pain knowing exactly what it was. Now, even that somewhat depressing thought--that enjoyable things can bring me great physical pain due to an accident that was outside of my control 25 years ago--is a walk in the park compared to the alternative explanation.

I feel this clicking in my pelvis as I'm walking to the elevator at work and my mind just won't turn off to what it could mean. And then my boss sees me and says Hi, how are you doing? And I find myself momentarily staring at her before I say I'm good. She looks at me a little strangely, but only a little. I play it off well enough.

And that's how it goes. I wait for the elevator like everyone else, but as I'm doing it I sometimes wonder if cancer is waiting for me. I go about my business, but that fear is there, and sometimes it is so tangible I can feel it. I know I am not supposed to say that anymore. Everyone asks me how I'm doing and I can honestly say I feel great. My hot flashes have gotten much better with that estrogen cream. I know that's what it is because I am now in the phase of not using it every day, only twice a week, and they are worse on off-days. But I exercise like a nut, I wear stylish clothes, my hair doesn't look that bad, and people look at me with this obvious relief so that I can almost hear their thoughts: "You look normal! I can talk to you again! That cancer thing was only a scare, a bad dream."

If only. I read all of these tales of people who survive cancer or something else and they start to appreciate all the little things in life or they only see the big picture. I don't think any of these people are real. I always did like the little things the most in life (the nectarine, my book and a chair) and I could see a lot of life outside of my own. But post-cancer, my life is just the same. I still have that perspective--it hasn't deepened, and life is still made up of a lot of little things. Some are just the drudging aspects of life. Work has its challenges. The house needs cleaning, food needs cooking, I need to try to find time to spend with my husband and god help me even my friends. My kids still need raising. I can't ignore all of these things and just smile wisely all the time with my new-found understanding of the universe.

What can I do? Ultimately I think I'm doing pretty well. I started reading the blog from the beginning a while ago and at some point I just had to stop. I actually started laughing. Did all of this shit really happen in the last 8 months? I couldn't finish it. There has been so much to go through, so many changes and losses and so much fear, which is really the worst part. I am already fearing my mammogram at the end of February, because again, I can't handle the idea that I might have to do this again. I am starting to like what I see in the mirror, even. (Though I will admit that while I can see this person in the mirror, or in her athletic bathing suit, or whatever, as a decent-looking individual, it doesn't look like me, like the old Katy, at all. Not to me.) I don't want to lose all of what I have taken back from cancer and go back to the dark days of chemo or face something even worse.

I want to just keep plugging along. I want to keep snapping at my kids and eating ice cream when I said I wouldn't and generally behaving like a normal person. Sometimes it is the little things in life that keep me going. I have been feeling very overwhelmed, in a somewhat normal way. I'm overwhelmed at work since I was gone for three months. I'm overwhelmed as a wife and mother who seems to be keeping everyone together, when I hardly am together myself. I feel like I nag my kids all the time and in addition to the normal guilt anyone might feel, I also feel angry at myself for wasting what could be some of the only precious time I have with them on bullshit.

And then sometimes, I can remind myself that my own feelings about the irrelevance of our day to day lives are actually the irrelevant part. What does that mean? Well, I want my kids to remember me as their mom, not their shaman. I don't want to bring philosophy and contrivance into a four year old's life.

As usual, I don't feel that I'm explaining this right. Here's an example. Lenny has a few cavities, even though we supervise her brushing and she doesn't usually drink juice or eat dessert (because she rarely eats enough dinner to warrant it). Gabe and I got in a big fight about why these cavities weren't taken care of when I was doing my treatment. This fight really blew up, because I feel like I had a damn good trump card for not having to take care of things for once, and now things are more difficult. Then Lenny threw a full-on tantrum the likes of which I've never seen from my child when I took her to get them filled--before any drill was even in the picture; she was just sitting in the chair freaking out. We had to leave, and now I will need to take her to a pediatric dentist tomorrow.

This whole thing struck me as simultaneously ridiculous, annoying, and a waste of time. I had little patience for the fight, even less for the tantrum. I got mad at my kid. I kind of wished I was a drinker for a few hours.

Then I was taking Lenny to gymnastics a few days later and I handed her a letter from that dentist. While we were driving I asked her to open it and read it. I thought she would struggle with it but at least see that the dentist cared enough to send a letter addressed to her, after not even charging us for the initial crazy-child visit.

And then she proceeded to read the entire thing to me. The only word she stumbled on was "convenient."

I could have been proud of my daughter's reading skills. I could have berated myself for being mad at a kid who is generally exceptionally good. She's not quite 5, after all. Instead, all I could think was, she'll be fine. If something happens to me and I don't make it out of this mess, she'll be fine. My yelling at her won't scar her, my best efforts won't make her less fearful. I have never feared the dentist, so I think that's just her. There is only so much we can take credit for when it comes to someone else's life.

What I said to her was "See? That dentist was really nice. She sent you a letter. And by the way, good job reading."

Augie will be fine too and I can finally see that now. He's started talking more. He has turned almost insufferably cute over the last few days, kissing everyone and laughing all the time and generally acting like the happiest kid alive. Who could tell he was ripped from his mother's cancerous breast just so many months ago? Only those who understand that he will never say the word pacifier. He could, and he knows what you're talking about, but that damn thing is still his Mama.

If the unspeakable happened, he'd be ok though. So would everyone else. I need to be able to put it out there that I am not looking at this Elizabeth Edwards-style. I'm not just saying "let me live long enough to see my kids graduate from high school." Because it's about me, too. Maybe I'm selfish, maybe I'm full of it, maybe I should just get over it, but in the end if I'm not all right I'm the only one who won't eventually be able to handle it because it's my life.

As I've said before, it's my life, staring me in the face. While these hips have been torturing me I just tell myself that one day, I will feel a twinge in my breast or a deep pulling under my arm (as I do all the time now) and it will simply be a reminder of what once was a daily struggle. I will do some new exercise, and my arm or my chest will remind me of how it used to be, just as my hips remind me that once I couldn't walk. I tell myself that, but sometimes I have those days like yesterday, and I cry and it makes me feel weak.

Most of the time though, I'm just doing the normal things people do, and I can even pass as a normal person on the street. When men look at me now--and it surprises me every time when they do-- they don't seem immediately ashamed. I get compliments on my hair. I sleep sometimes. And I do weird things like row, which might not be the best thing for my body, but I have my reasons. I spend an inordinate amount of time exercising for someone with my hectic schedule. I do it because every once in a while when I am really pushing myself, I feel my body just cooperate, and I feel and think nothing else. Someone barks orders at me and without thinking my body complies and is at home with itself, something that I have rarely felt, perhaps never felt, since before I started taking medication for epilepsy at age 6. My body is like a Chicago season--I am always aware of my own weather. I rarely have those days when the air is so perfect you can't even feel it. There's always wind, or cold, or heat, and I am all too aware of how my body works and what it takes to put one foot in front of the other.

I cherish those moments when I can trick myself into thinking my body is Hawaii. The rest of the time, I am just living my life, moving along, kind of like Emily Dickinson's chicken. My mom told me this joke and it made me smile:

Why did Emily Dickinson's chicken cross the road?
Because he could not stop for death.


  1. It's not fair having to comment on your blog when you have such an artful turn of phase... I always feel at a loss for words and think it seems silly to comment when I can just tell you in person. Anyway, sometimes the thoughts ought to be memorialized, so here's some for you to reread over and over.

    First I've got to make one edit; replace "my hair doesn't look that bad" with "my hair is looking pretty cute."

    We really need to talk about this business where you say everyone will be OK except you if the unthinkable happens. I know it's your life and all, but you are a huge part of my life, have been for going on 8 years. It feels trite to say it, but should I outlive you, a part of me dies with you and I will never heal completely. I shouldn't have to say this to you, the one who knows all about the lingering sorrows of old injuries a lifetime ago! And a part of you/us will live on in our children whenever our lives should end.

    Someone asked me today how you were doing, and I said, "Katy's doing really well under the circumstances." This clever person retorted, "Yeah, well, they say that about Gabrielle Giffords too... but she was doing a lot better last month." Later in the day I voiced to another friend my frustration at the pressure of always feeling like we have to make the best of every moment together because who knows how much longer we'll have any kind of moment together. Occasional depression's more than understandable after what you've gone through... but since I'm so good at worrying about the end of the world maybe you should let me be the one to worry that your (insert the current ache of the moment) is a metastasized time bomb counting down your quality of life moments. Because I KNOW when your wrist starts to hurt where that ganglion was - you'll be convinced it's cancer.

    You seem "fine" on the outside according to the doctors. They can't see what's inside your head, the injury and scar tissue in your mind stretched taut awaiting an ill word that "cancer's back." I shivered when I read the line about waiting for the elevators - I'm just envisioning the light flashing, the ding, and as the door opens some scabrous personification of cancer looks up to greet you.

    The extended motif is that your blog has become quite the work - as we know, over 200 pages and probably a good 180 even if you take out the pictures. The same friend I was complaining to earlier today confessed that "it's a serious commitment to read; it would make for an interesting book, but it wouldn't be for everyone." My response - "the final chapters aren't yet written."

    Reading today's post, though, love, it definitely feels like you're winding down a bit and preparing for the happy ending. It's yours to write after the last 8 months... thank you in the meanwhile for recording and sharing your turn of phrase, horrible experiences, deepest fears, and each enduring victory on the long road to remission here where we can all remember what it was like. Recurrence is unthinkable yet survivable... I desperately hope that you get the straight up happy ending on this first go around and not some horror movie cliché.

    In the meanwhile, as we await whatever the end of Katy's tale may be, just cherish the good moments some of the time, be human about things the way everyone else is, and let me sweat it out worrying about the what scary suffering waits on the other side of every future test result in your proverbial Death Valley, so that you can ride off into your Hawaiian sunset and wake into a new post-cancer life full of promise and whole future ahead of you to win.

  2. Well, for once I am at a loss for words. I don't want to follow EITHER one of you.
    But of course

    I will.

    It's not cancer hon, it's rowing. Any time aspirin takes away the pain, it's arthritis. I would say find another hobby, but then I would also say, if it helps the mind in other ways, row away.

    As your mom, it's hard to read any mention of your expecting me to go on if the unthinkable happens. That's because it's unthinkable.

    we all go on. There is simply nothing else to do.

    And you will too. I do think there will be a new day when cancer is not at every door that opens for you, elevator or not. But apparently it will be a day in the future.

    I remember Dr. Baum, was it? who told you that everyone who hears that awful news wants it to be a year later. A year later it will be. And then two and then three. And then many.

    Yeah, no one knows what will happen. But I'm going to go with the best case scenario. You're assuming it for Lenny and Augie, and, being in much the same place as you in that mom way, I can do nothing else.

    But the beauty of your words - and of Gabe's this morning - continues to console me. You may be writing this blog to get out your feelings, but like I've said all along, without it, I would be lost.


  3. I definitely can't come up with a post eloquent enough to match your writing, but follwing your blog makes it so clear that you are so strong!! This cancer takes a beating out of us, and yes, every little pain triggers the thought of a recurrence, which is so scary. However, after 10 months of being part of cancer, I am slowly - very, very slowly - learning that we cannot let it take over our lives. There is the rowing to do, the kids to chase after, and yes, those dentist visits. Even the normal so important for our soul and I am glad to see that you are aprtaking in those activities. Stay strong!

    (P.S. - I've made it a rule not to read medical stuff online 2 hours before bedtime; seems to be helping a little).

  4. Ultimately I think you're doing pretty well, too. Death has got to be a strange traveling companion. Just try to control what you can, let go of what you can't, and don't be too hard on yourself for your "bullshit," because that's part of life and you are still living. And if it's validating in any way, yeah, your hair does look really different and will take time to get used to. To be clear: I think it looks good, very stylish and elegant. But, of course, many things are different along with the many things that are still the same. The new normal... it takes time to absorb.