Day 803: An Ode to Anyway

Wow, that title throws me. It's been more than 800 days since I was diagnosed with breast cancer. Looking at it from that vantage point, it seems like 800 days is nothing. The time has flown. It has crawled. I've wanted to stop time, slow it down, speed it up, just generally do impossible things in the space-time continuum, for a variety of reasons. Time, and the things we do with it, has been important, and it has been irrelevant. Days and milestones come and go.

I guess I should have written a blog at 800 days. Or, when it was the 2 year anniversary of starting chemo. But I didn't. I was occupied with other things. But I feel some urge to make up for those things, so here I am, writing a blog almost exactly two years after preemptively shaving my head before chemo took my hair away.

I don't have a lot to say about that experience that I haven't already said. I wrote a blog the day I shaved my head, , the day I made Gabe bic it smooth for me, and last year on July 15, 2011, when the memory was raw enough for me to acknowledge the anniversary. There's nothing more for me to add about actually being bald.

I can say that I learned some things. I learned that in some ways, having an extremely distinguishing, highly-appreciated characteristic, such as beautiful long red curly hair, can be a crutch, a burden, and a gift all at the same time. It can prepare you for rudeness, for people staring at you and then looking away. You learn an early lesson, which is that people are weird, focusing so much on some dead shit you didn't do a damn thing to bring into the world. Having something like that teaches you the importance of real compliments. My mom always taught me to give compliments based on things people could control: their style, their personality, their skills. Never give a compliment based on looks. People don't choose their DNA. I can't say I entirely agree with that; but I remember how uncomfotable it felt to have strangers (mostly white folks, I will admit) tell me I had a beautifully shaped head, and how satisfying it felt to have strangers (mostly black folks) tell me things like "that haircut looks good on you" and "I like your style" when I was walking down the street or standing in checkout lines while completely, utterly bald.

I mean, I didn't choose to be bald. It was horrible to shave off all of my pretty hair. But, in the end, I chose to walk around the streets of Chicago like that, like it was nothing. Once I was in the throes of chemo, I could have made a different choice, and it would have been fine if I had. But I will always remember getting those nods of appreciation for a decision I made. And the memory will feel something like pride.

I will always live in the house I built, the one where my three year old son sees a picture of us both bald, and when I ask, hey don't we look alike? he acts confused and says no, in that picture I'm a baby. You're a mommy. Yeah, but we're both bald, I remind him. What's bald? When you don't have any hair. Oh, ok.

Like that's nothing.

Because, you know, it is.

Don't ever tell a cancer patient it's just hair. Because it's not.

But it is. And one day, they will see it that way, and they will have earned that statement in a way that you haven't.

Hair, and breasts, and walking around without pain, and having normal toenails, and waking up in the morning and never feeling surprised--in this house, that's nothing. That's not the important stuff.

I live in this house now, where my hair actually looks stylish but every once in a while my husband runs his fingers through it and I see a wistful look on his face.

Because he's remembering how much he loved to touch my head when it was bare.

I live in this house, where it's hard to catch my breath sometimes, and my heart races when I get up too quickly, but I go to the gym in the 100 degree heat anyway.

I live in this house, which was probably an idiotic thing for us to buy more than a year ago, right around the time when I wrote my most googled blog of all time, and I love it every day with an irrational love that's all tied up in hills and bookshelves and floors that are beautiful when we never expected them to be anything but ruined.

I live in this house now, and it's a different place than where I lived two years ago. I don't miss my old house, but I do pass by it every once in a while. Sometimes, I even go inside.

They say that true courage is not being unafraid, but rather being afraid, and doing things anyway. At many different points in my life, people have told me that I was courageous by this definition.

I don't intend to argue with such a real compliment. But I've learned some things. One is that courage is beside the point. There's nothing else to do but do things anyway. Sometimes you are afraid, and sometimes you are not. Sometimes you have hair, or legs that walk, or a highly-functioning heart, or lungs that take in air easily, or cells that follow the rules. And sometimes you don't.

Here's to doing stuff anyway.

(Including, incidentally, Twitter. Follow me @KatyDidTweet. It scares me, but I'm doing it).

Day 508: The Beat Goes On

If this blog does anything for me, it shows that time changes things. A year ago today, I was released from the Critical Decisions Unit of the local trauma-center hospital after spending 36 hours there for chemo-related heart issues. That was one of the darkest times in my whole experience with cancer. I remember everything about that hospital stay as if it happened yesterday, from the conversation I had with Gabe about using my life insurance to pay for a nanny for the kids, to the kind doctor who attended to me and brought me some much-needed faith in the overall humanity of the medical community, to the realization of how immodest I had become in my new starring role in the Katy SciFi show, where I was bald, with fingernails painted black to try to stave off the chemo-rot, with heart monitors and patches all over my chest, reading a book about genocide in Rwanda and wondering if I was trading early stage cancer for a permanent heart condition.

And here I am now, with no more sense of the answer to my question than I had then. I have no idea how well my heart is working except to say it seems to be working just fine. And I have no idea if there is cancer in my body, though I can't imagine that there is because the concept seems too unreal, even to me, a person who has already faced the reality of multiple, insidious tumors growing inside me. I don't know, but I'm just assuming I'm all right. After these 500 days I've started to assume that I am actually a cancer survivor, that chemo didn't permanently alter the inner-workings of my heart, though I know it is too early to really say.

I've heard about breast cancer survivors who get multiple MUGAs all the time to assess the performance of their hearts, I've seen pictures of women going through AC chemo whose hearts were continuously monitored during the infusions. Not so for Katy. I never had any of that, just as I have never been offered follow-up blood tests. I guess this should disturb me, but in general, I just want to believe I'll make it. I left that hospital a year ago, ingested beta blockers every day for the remaining month that I did chemo, took myself off them, never followed up on my heart issue except to take Zyrtec when Taxol gave me heart palpitations, and have tried to not look back. My heart seems to work, but how do we ever really know what is going on inside of our bodies when we can't see it? The trouble is, you don't know until there's a problem. I felt wonderful until I found out I had cancer; hell, I physically felt just fine after I found out. You wake up in the morning and walk around and go about your day and just take it on faith that you can do these things, because, well, you are doing them. My heart must be working, because it hasn't stopped beating. I'd love to say the same about cancer--it must not be in my body, because I feel so opposite of what we assume it feels like to have cancer that it can't be true.

Cancer, heart conditions, epilepsy, many physical disabilities are ironically these insidious beasts that you often can't see. I have received so many comments in my life that start with the following statement that sometimes I feel that my goal in life should be to prove that appearances are deceiving: "But you don't look like someone who...":
has cancer; should be in a wheelchair; is so smart (a few guys have actually said that to me); recently had a baby; has seizures; does economic research; is in her thirties.

So who do I look like if not myself? How can anyone look like anyone else, and what are you really supposed to do with any of those statements, those supposed compliments that, perhaps unwittingly, deny some aspect of who you are? A year ago, Gabe said something to me like, you don't look like a sick person at all, you don't look like you have cancer or a heart condition. You just look like you, bald. Because you are just you, bald, doing cancer treatment. You're not sick. It's weird.

And he was right, it is weird, isn't it? It's weird how we can't get away from ourselves even when we feel like our selves have gotten away from us, that our bodies have betrayed us. Perhaps that's some kind of goal in and of itself, to be yourself completely, even in a state when you feel like someone else entirely. Because you don't have the option to be someone else, it's ok if you feel like you're faking it.

Today I was managing a conference at work, and I looked around the room, which was 90% men, and I was one of the youngest if not the youngest people there. And though I should have been thinking of other things, I found myself wondering, how did I get here? Am I really some kind of expert on payment systems? Is my work life a real thing, is this really me? People seem to like me and respect me in this environment, they seem to believe I know something, and perhaps I do, but then why do I feel like I'm just making it all up as I go?

In my role as moderator, I didn't know exactly what to say, so I spoke about the Fed's interest in payment system efficiency and integrity and payments governance. Then I said that I didn't think we should feel too bad that we didn't have all the answers. I related a story of how when I was walking into the Fed this morning, a very aggressive protester got up in my face asking me "Did you vote for the war? Huh? Did you?!" And I said to the audience at the conference, if there are folks who believe that the Federal Reserve, or me in particular, makes military policy, we shouldn't feel bad about being confused about who is in charge of something like payments. This got a lot of laughs, and some people even clapped. My strange confrontation in the rain made that little moment possible, and I couldn't have planned that.

A little later, one of the very few women in the room (hello? if we've made strides in equalizing fields where men and women work, I'd like to see the evidence) was talking to me about the event and then suddenly said, your hair is so cute. It's so daring. Huh? I asked, looking enviously at her very stylish short haircut. Mine is so average, she said. You're much more chic. I said thank you, but I thought, this is chic? This is sticking a barrette in my hair and tousling it after the shower because I have no clue what else to do and figuring, what the hell, it's a step up from bald so let's just walk out the door. And then I thought, this is how I know I know something about this--because I can just wing it, and it turns out ok anyway. I can use the story of what just happened right before I entered the building and it can sound relevant. I can be lazy about my hair, and somebody out there will think I spent money to get it to look like this. If I play it off well enough, enough folks will think I planned the whole thing, whatever it is, that my life will look purposeful and knowledgeable, which, in turn, might actually be true.

That's what I'm trying to do over here in general, I guess: be comfortable enough in my own skin that I can just wing it. Hell, maybe that's the only thing I've ever been able to do. I can sit down at the computer with no idea what I want to say, except that I want to comment on where I am today compared to where I was a year ago, and in the end it sounds like I had some kind of message, though I'm not sure exactly what it is.

It goes back to the old theme, the need to be able to see yourself as if you are outside of yourself. At the start of my diagnosis, when I was deep in the sorrow of losing my hair and potentially my breasts, a few people who were close to me told me that the characteristic that most defined me was not my hair, but my big black eyes. I didn't believe that then, and I don't necessarily believe it now, but perhaps I should take their word for it. Maybe the eyes show something: that weariness and acceptance from a year ago, the relative contentment of today. Back in those early cancer days, someone said that the "killer" thing about my eyes was not the way they looked but the way that they looked when they're looking at things, and that wasn't going to change. What a wonderful thing to say; what could I say in return? Well, I can offer that if eyes can show anything, it's just a reflection of what they see, of the world. So it's not me, but the world that I see and the life I've been able to live that is interesting, that is worth reflecting on. I like to think that I see the world as it is, that I'm comfortable enough with myself and this strange vessel and this convoluted mind that I can show my hand, reveal myself, without worrying about losing too much. So I guess I'm just writing this blog today to say that as long as it's still beating, I'll keep wearing my heart on my sleeve, or at least on my face. It's easier to see it there than inside of this strangely distorted chest.