Tuesday, June 30, 2015

Day 1,752: Sunburn

When I was 19 years old, I burned myself with an iron.

Twenty years later, it's funny to think of myself ironing. My mother ironed every day, everything--tshirts, even. My grandmother had one of those old fashioned irons--no cords, just pounds of iron heavy in your hand when you heated it over a fire and hoped no one startled you. They used to iron sheets. Why did anyone do that? To kill vermin, I suppose. Me, on the other hand, what was I doing? It was summer. I was 19, home from college, looking for a summer job. I wasn't going anywhere special that day. I had one of those portable ironing boards you place on the floor. The phone rang, and I moved my arm to answer it. It was such a small movement, something you do multiple times a day, every day. My boyfriend said hello and I gasped from the pain. I had placed the iron standing up on the board, and my arm went straight against it. "Oh my God. I have to go." I hung up the phone.

This was no minor burn. The burn immediately broke, and bled. It covered almost my entire forearm. My mother lived in a tiny 3 room apartment, and she was in the galley kitchen. I ran in, stoic as always, not crying, but grasping my arm. I told her I had burned myself. She looked at me blankly and said "I'm baking a pie."

I did not know what to say to that.

I waited for her to react, to realize, but she didn't. My brother was visiting home as well. He had graduated from college and was in grad school. He was 22. He too looked in astonishment at our mother. And then he said "Uh, OK. Katy, let's go. I'll take you to the hospital." We drove to the emergency room; we might have talked, we might not have--I don't remember. I grasped my arm as hard as I could so that I could feel some pain that was not the pain I was really feeling. And isn't that how it is with everything?

Back in those days, with the way health insurance worked, the emergency room was not a place you could visit lightly. I was put on the phone and forced to talk to an insurance company representative and self-diagnose how bad the burn was. I was not the right person to ask, with my high tolerance for pain and assumption that it could always be much worse than it is. They sent us away, to an immediate care center. Once there, the nurse was aghast that they hadn't treated me at the hospital. She scrubbed the burn, dressed it, told me I was lucky, as it was very close to third degree, and gave me instructions on how to take care of it at home.

All my life I've feared being a burn victim. For as long as I can remember, it has been my worst fear. Cancer hasn't changed that. Burning, my loved ones burning, the pain, the numbness, the smoke, the disfigurement. This burn, however painful, was so small. It covered just a quarter of one of my arms. But when my mother, who had come out of that pie-stupor, tried to change the dressing, she was so gentle with me that I knew it wouldn't work. Her dabbing at my skin would not get the job done. I remembered how the nurse had scrubbed, how tears sprang to my eyes. I took the cloth from my mother and scrubbed that burn myself. The pain was excruciating. I had to bite a toothpick in order to clean it. My body changed temperature, I broke out in a sweat, I felt nauseous. I felt weak, pathetic. They had warned me of how burns, no matter how seemingly insignificant, impact the body. It isn't voluntary. How do people survive major burns, I wondered? I thought of a newspaper article I had read as a child that haunts me still. A young girl, burned in a house fire, her nose burned off, her lips gone, her entire body burned. She sat in her disfigured state with her arms crossed in defiance on the school bus where no one would sit near her nor talk to her. I asked my mother why she was so angry and she told me "look at what she does every day, what she has to do. Maybe being angry is what it takes to do that." I saw anger differently after that.

Who was I, with this tiny, insignificant burn? Why couldn't I sleep without holding my arm straight out? I could not let the lightest sheet touch my skin. My boyfriend slept with me in a twin bed in that tiny apartment and made himself smaller next to me so that I could lie with my arm outstretched. The next day, he changed the dressing for me--he was the only one besides me who could do it. I still remember that.

For years, that burn came back every summer. With the return of the freckles on my face, a perfect pink triangle (half the size of the full face of an iron) would appear. It got fainter with time. I thought it might be permanent, an involuntary tattoo. Eventually, it disappeared. Ten years later, maybe, fifteen? I don't know. One day I looked, and it was gone.

When I was 35, I burned myself with radiation treatments.

It's funny, five years later, to think of everyone's surprise at how my body handled radiation. The fair, freckled redhead, who barely burned, well not until the end, when the sunburn spread across her chest. The sunburn not caused by the sun, nor an iron, nor a fire. The sunburn that altered the DNA of the flesh it touched. I remember the radiation technician who compared me to a Thanksgiving turkey, surmising that I didn't burn because I had no fat on my chest, and just think, when you deep fry that turkey, it's the fat that burns hottest. I remember running into the house after my last treatment and ripping off the radiation tape, and some of my skin with it, and not even caring.

It has been years, and that burn comes back every summer. There is no sunscreen that can match it. After the long Chicago winter and this year the long Chicago rain, I will find sun and water again but I will also find that burn faintly spreading over my chest. I will be lying there, reading a book in the sand, and my husband will stop building castles with the kids, walk over to me, and point: "Kate. Your chest."

Oh right, I say, putting more sunscreen on, knowing it won't make a difference. My chest will be twice as dark as any other part of my body. It's my job to accept that, his job to casually notice it, my body's job to remember.

There is no larger lesson here. This is just to say. The light and the heat are beautiful and deadly. The warmth gives us life and the heat brings our greatest pain. The beach and the quiet and the perfect waves and the bald eagle flying over a rainbow the evening before the Aurora Borealis appeared coexist with the rawness and the illness and the reminder of what it all means.

Everyone has it, I suppose, all of us have this burn. On some of us, it is simply easier to see. Our bodies tell us every day, they try and try to remind us. All of us have that tenderness that makes us cringe from the most loving touch. All of us are marked.

Sunday, June 14, 2015

Day 1,736: To a Man Who Doesn't Drink Coffee

After more than five years of writing this blog, I've come to a point where I don't often have anything to say. Well, that's not entirely true. I have a lot of things I want to say, a lot of things I want to write about, but I'm really busy, and many of these things wouldn't "fit" with this blog, and I am terribly neglectful of LiveChickenOnSix. I've always been cognizant of the fact that when one writes a blog, especially one about something as mortality-related as cancer, there is a sense of urgency related to writing about special occasions. If we don't acknowledge them, how would we feel if that birthday or Christmas or graduation turned out to be the last one we witness? If we don't write about them, does it mean we don't care, that cancer hasn't made us better and more grateful? Who are we trying to please--ourselves, our loved ones, the amorphous ether?

After five years, I realize that my motivations have never actually wavered--they have just become less pressing. I still write this blog as a love letter to my family, in case I don't make it out of this mess. I write it for my kids, so they will know something about me after I'm gone, whether that is sooner or later. Sometimes, I write it out of a sense of practicality: people want to know how I'm doing. I've failed miserably there, of late. I never wrote about my clean mammogram or getting "promoted" to screening, rather than diagnostic, annual mammograms--like a woman who has never had cancer (twice). I never wrote about my 3 month checkup with my oncologist (I'm fine, I look great) or how I've graduated to six months. I didn't write about my terror over being so tired for two weeks, with a terrible, persistent wheezing cough, and how I had to try to hide my fear of metastatic breast cancer to the lungs. I never wrote about the uterine polyp they found that I am supposed to have removed but DON'T WORRY KATY IT'S NOT CANCER and you know what, Doc? I'm too lazy and tired of going to the doctor to even make that appointment. If I start bleeding to the point of anemia, we'll talk.

So I haven't written about my health and I haven't written about much else. I wrote something short for Augie's birthday, and I am writing something today, for Gabe's 40th birthday. I told the kids I needed to go upstairs to write and Lenny asked "you're blogging today?" She sounded surprised. I told her I always wrote something for all of their birthdays. She got mad: "Hey! You've never showed me anything you've written for my birthday!" Au contraire, mon frere. Remember how I read that letter to you in front of hundreds of people? But, on the other hand, she's right. Someday I will need to let the kids read this blog. I guess in one way, I've been waiting for them to discover it without my help. But I digress. It's Gabe's 40th birthday. That's a big one. We met when we were 27, got engaged at 28, married at 29, first kid at 30. A decade more has passed, and so much has happened. Neither of us signed up for what we got, but no one ever does, and we are happy with it, happier than we expected, probably. Gabe has been dreading this birthday. I don't get it. I like getting older. Hell, I've been trying for 40 since 34.

He wouldn't let me throw him a party. His desire was to have a birthday wherein he "didn't have to talk to anyone." Well, that didn't fly with me, though I can relate to the sentiment. So, I got a half dozen of the guys to come over last night. Gabe jerryrigged some situation with our tv and computer so we could watch the Blackhawks game on the porch. I bought a chocolate cake and put out some chips and guac, cherries, and Doritos. These guys were so excited about Doritos. They drank scotch and I watched the game with them and then left them to their own devices for a few hours. I got Gabe a bouquet of flowers, some chocolate, some tshirts that talked about him being 40, a Death Star rug, and...this.

I wrote this for my husband for his 40th birthday because I've been short on words. Poetry is the best response to that. I handed him a copy of this in a frame, and he cried before he even read it. Then he went into the other room and read it and cried great heaping sobs into a pillow on the couch. And so it goes. Gabe cries, I stand by awkwardly, our kids make fun of us both. Happy birthday, baby. I love you.

To A Man Who Doesn’t Drink Coffee
For Gabe on his 40th birthday
By Katy Jacob

You don’t know coffee.
You don’t know the steam on your face
or how it’s best when it’s burning you.
You don’t know how to hold it in one hand
with a cigarette in the other, you don’t know 18
and getting both the French press and the smoke rings wrong
but getting the sepia of that memory just right.
You don’t know when it’s good and when it’s just necessary.
You don’t know spending $30 for the right bag.
You don’t know how it makes you feel like Paris
when you’ve never been to Paris.
You don’t know the headache or why it’s worth it.
You don’t know sitting on a back stoop
on a windswept frigid day and everything feeling like home.
You don’t know why milk but no sugar.
You don’t know paying a dollar and playing gin
until they turn off the lights and close the place down.
You don’t know reading the newspaper in silence
at 15 and your mother passing you a mug.
You don’t know wishing for a better vice.

You don’t know this—especially this:
You don’t know that I see you
and how I have seen you these twelve odd years,
blurry eyed and stumbling in the dark,
making a habit of my habit, making sure it’s waiting for me.
You don’t know that I think about it,
how and when it ever started, that I don’t remember,
and anyway, even if you do know, you don’t.
You don’t know coffee, but there you are all the same,
every day of this too-short life
we’ve vowed to spend together,
scooping and pouring out love
in just the right proportions.