Sunday, August 11, 2013

Day 1,145: Perfectly Imperfect

Damn, cancer takes up a lot of time.

In the past month, I have gone to a doctor's office or hospital for a test, procedure, surgery, consultation, physical therapy or something else on 14 separate days. Even though I have recovered almost absurdly fast from surgery--save the fact that I had to have a bunch of necrotic flesh scooped out and the incision site re-stitched 3 days ago (yes, you read that correctly)--it's a damn good thing I've been on leave from work, because honestly?

I haven't had time for much lately.

After running around and driving myself all over creation in order to get to all these appointments, I have been: taking an hour long walk every day, going to the grocery store, cooking for my family, doing laundry, shopping for the kids' back to school stuff, reading uplifting books about rabies and the Irish potato famine, having sex while I still have the energy, getting used to this weird Frankenboob, trying not to lose whatever I had left of my normal body (what happened to those biceps? what happened to those I had babies but look I still have them abs? three weeks, people? that's all it takes for it to start to go to hell?) by doing weird modifications of the exercise that used to be such a big part of my routine (one armed planks, spinning but sitting in the saddle almost the whole time, lifting 2 or 5 pounds so as not to rip my stitches out) and completely forgetting to call, email, and text the people who have contacted me because I've just been so busy with cancer and life and the attempt to reconcile the two.

I've been too busy to write anything here, and I realize that that is a problem, not for me, necessarily, but for some of you. I know that people go here to find out what is happening with me, that people who aren't connected to me on facebook rely on this forum in order to learn what decisions I've made regarding my treatment, that even people who are closest to me in my real, non-virtual life count on the blog for information. And yet, I have always said that this blog has had an odd impact on my life. People often think that they know what is going on with me because of this forum; people read about some intimate aspects of my life and might feel that they therefore know me intimately. That is just the nature of the beast; that is the natural outcropping of a life partly revealed in the cloud. Anyone who does this for any reason deals with that to some extent.

There are a variety of things that make this different for me. One is that I am writing about something that scares people and makes them sad. This is especially true now that people thought I should have been done writing about it; my recurrence has definitely upped the ante. Another is that I am a fairly even-keeled person who likes to watch stupid action movies and talk about nonsense and play catch, and then...I write this. And sometimes, people do not know how to reconcile what they read here with who I am in person.

When I began writing this years ago, something interesting happened. Some of the people who most appreciated this blog were those I knew when I was a child, or a teenager. Women and men I had not seen since they were girls and boys would write to me, telling me that they felt guilty saying this, but that they ENJOYED my blog, that it made them feel that something must still be right in the universe with me because by reading this blog they could tell that I was still ME. One woman wrote to me and said she loved reading it because she could imagine the sound of my voice reading it to her, and she felt like she was talking to me, and it comforted her. These were all people who knew me as the nerdy, irreverent, not very girly goofball I had always been--the one who wrote deep poetry and won all the writing awards. There was no contradiction there--in fact, this was just so KATY. This is the same reaction I've had from people who know me BECAUSE of this (other bloggers, for example) as well as from people I met in college, graduate school, or some other place that lends itself to philosophical musings, which, let's face it, responsible adult life does not.

And yet, this blog has also kind of...isolated me, especially from people who have come to know me as an adult, through work, because of kids, or what have you. I know that sometimes people read this and think my God, what has happened to Katy? What happened to that woman who can casually talk shit about anything...where did she go? This weekend, we had a very nice visit from one of Gabe's best friends from college and his family. A few hours after they arrived, he told us that he had been worried about intruding on us. He said that within five minutes of being here, he had to ask himself what the hell he was thinking. After reading the blog, he assumed we would all be sitting here dressed in black or something, and what actually happened was that we ate deep dish pizza and our boys all ran around together and I sat there talking to his wife who is a teacher about how ridiculous teenage boys are.

Things are almost indescribably normal around here, deep blog posts aside. It's like cancer lives in another house, and I am telling its story.

I can't remember the last time I cried about cancer, or felt emotional about this pile of bullshit that has landed on us over here. I stopped covering up my disfigured chest within a week of surgery and I went out in public with a bikini on within ten days. I made a decision to do six months of what will hopefully be a less-toxic chemo regimen, knowing that all kinds of people had opinions about that decision, in the same way that others decide whether or not to buy that used car.

So maybe cancer does live in another house, and maybe that is what I have been trying to say all along. Cancer is a real scourge. For some, it is a death sentence. It is terrifying for everyone, and everyone who has it has to suffer, because that's the price you pay for trying to survive cancer. Cancer--and the treatments for it--can and usually does permanently alter your life, and not just metaphorically, but physically, actually, truthfully.

But do you know what cancer is not?

It is not a war. It is not a battle. How could it be, when for those of us who live with it, it is us? Cancer is a part of us--a part that went wrong. And it is possible to isolate that part from the rest of yourself, and hold on to what remains. It is possible to occupy two houses at once.

This recurrence tells me that realistically, I have probably had cancer in some form, at least on the microscopic level, for the last six or seven years. I have probably spent my thirties with cancer in my body, almost all the time. And you know what?

My life in my thirties has not just been has been great. I have had children and learned how to have a truly happy marriage and I have stuck my claim in this odd and cerebral career path of mine and I have bought my dream house and a lot of other wonderful things have transpired. Nothing about the cancer part has been good--I will go on the record saying that if I could, I would trade--I would trade in an instant.

But as I said when I wrote of my recurrence for the first time, not everyone is meant to be healthy. Not everyone has a body that works perfectly. That does not mean that we feel that our lives are less worth living until they begin working perfectly again. There are a hell of a lot of people who just learn how to live with imperfection, modifications, and the possibility of death right around the corner. Two years after I had my head shaved during chemo, I wrote this, and it is still true:

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.

That's it--that's what makes it possible for a person like me to write something like this. All of these different aspects of ourselves can co-exist; there is no reason a person can't be both irreverent and deep, and there is no reason a person can't have cancer and be extraordinarily healthy in all other respects at the same time. I am the person, after all, who learned how to do this a long, long time ago. I had a scary, potentially deadly condition that necessitated me taking medication that had significant short and long-term side effects. And you know what?

I just had it--I had epilepsy. That's just how it was. No one was waiting for me to get better. No one who knew me then ever thought I would be free of it. No one looked at me with sadness or treated me differently or told me to kick epilepsy's ass or said it wouldn't have happened if I had just eaten more kale or reconsidered befriending me or felt inspired by my struggle or said well damn, you're still sexy for a girl whose brain misfires all the time. The fact of my epilepsy was both isolated from the fact of the rest of me and an intrinsic part of who I was. I have written about this before, about how important that was for me in my youth, the way everyone just accepted me. It helped me do what I needed to do, which was live the life that was presented to me, not the one I might have wished for otherwise.

I really wish I could say that I was free of cancer, but I have no idea if that's true. I know for a fact that I have been living with it for a long time. I still have the albatross of the possibility of mets hanging around my neck. I still don't know if I will live to see my kids reach their maturity. And one of the things that I was most afraid of has happened, and that has freed me of the fear of fear. I am not even overly concerned about handing my arm over for my first of 12 chemo infusions this coming Wednesday, not even when it's possible that my new incisions might not have healed. Perhaps I should be worried, but I'm not; I am truly resigned to what has happened and the fact that I can't know what will happen next.

And so, I do this, with some knowledge of how to do this because I have done this before. And by "this," I mean everything--what I have to do to treat my cancer, and what I have to do to hold on to myself.

I wrote this approximately three years ago. But those who know me best know that I have always been writing this. And this too.

Reading a Poem in the Oncologist’s Office
by Katy Jacob

The poet had written maestro,
But I read it as metastasis.

It’s possible he meant master,
But why not change in form, spread of disease?

They fall off the tongue like close cousins.
Perhaps music and suffering are not so far apart.

You might say that my mind plays tricks.
I’d ask you if death is not lurking behind our other words.

Life can be like that now;
Normal is a double-take into a dark place.

If someone says beautiful or brave
I know they really mean interesting or terrifying.

Poets could learn something
From this total loss of control.

How a thing starts is not how it ends.
Your intentions and your meaning are not the same.

Besides, who would question my interest in definitions?
Who would blame me for always reading the last line first?


  1. This is a great post. It is rich on so many levels! You're a terrific writer, you state the truth about cancer in a terrifically truthful way, and you explain how it is that we can appear in person to not have a care in the world and yet go home and write of the darkness that is cancer and recurrence. "It's like cancer lives in another house, and I am telling its story." True dat.

    I also love your line: "Cancer--and the treatments for it--can and usually does permanently alter your life, and not just metaphorically, but physically, actually, truthfully." Yup, you nailed it.

    Adding you to my favorites! :-)

    1. Thank you, Renn. I know that I, and all other cancer survivors, would be happy with the cancer war metaphor if cancer was indeed just a metaphor! Like everything else, it's just so much more complicated than that.

  2. WOW... just WOW..... On every level. Perfection.

    I read it twice... because yes, it's THAT good.


  3. Keep us informed always. Thank you for sharing your experiences to us. I have seen your previous blogs and it inspires me so much.

  4. I love this post. I really appreciate your excellent writing and this disease has so many complexities. Getting a recurrence is also so frightening. It causes so many questions in our minds. You have such a great grip on all of this. This is spot on!

  5. You are so right. It is complicated and different stuff works for different people. My mom was a cancer survivor and never even talked about it. She didn't want pink ribbon crap, to walk in a race, or have niceties thrown at her... that just wasn't her style. Everyone has to face it their own way and all I know as an outsider is to cheer that person on. So, cheers to you for fighting any way you want to.

  6. As a fellow breast cancer survivor (diagnosed in January 2012) and LISTEN TO YOUR MOTHER alum (May 2013), I just had to drop by and leave you lots of love and light.