Saturday, January 13, 2018

Day 2,678: Standing Up

I haven’t written in a long time. There are a lot of reasons for that. The main one is that I finally realized I was in the throes of a crushing depression, and I needed specific intervention. The light went on when I realized I had finally managed to lose a few of the 10 pounds I had wanted to lose—because I was too apathetic to eat. I found myself crying, an alien scenario for me. I didn’t want to do anything or see anyone; I wanted to flee, to get a divorce, quit my job, move. My anxiousness and restlessness were at fever pitch. I knew I did not just need therapy. And so, I, the person who hates taking medication more than anything, asked to go on antidepressants. I asked my gynecologist. If you read this blog, you won’t find that odd. Within five days of taking 10 mg of Lexapro, I was baking a cake. I felt like a totally different person. Three months in, and the difference is astounding. The fatigue, loss of libido and even the possibility that this drug is destroying my liver (since I was on liver-killing anticonvulsants my entire childhood and I took liver-altering chemo as well) have not stopped me from thinking the drug in some ways has saved me.

In a sense, Lexapro made it possible for me to help myself in other ways. At the same time, I started going to a trauma-based therapy practice—the first time I have ever found therapy to be useful. This was after I read an article about trauma-based therapy and saw that I had not one or two but at least five different categories of things that qualified me. I also decided to stop drinking, and I never even drank much. I did all of these three things at the same time. And I came to realize that I had been living under a continuous haze of PTSD, not since cancer—for probably at least 30 years. Do not think I am being dramatic or seeking sympathy. I have learned that coping mechanisms are just that—they can be extremely positive. I have learned a lot of things about myself now that the chemicals have released me from decades of constant agitation, anger and furiously-driven purpose. I have been able to sit back a little, and reflect.

I will write more about all of that in another post. Today, however, I want to talk about something else. And I haven’t written in a long time, so it will be a long one.

The last week has been filled with the same public insanity and inanity that has become our common culture. The person who is representing our country to the world berated an entire continent and two unrelated countries, all of which are populated by mostly black and brown people, as shitholes, while opining about Norwegians helping him fulfill his Aryan race fantasy. At the same time, the #metoo movement collided with the equal pay movement in an absurd situation in which one male actor made $1.5 million while the leading female actor in the movie made $1,000 for a reshoot that had to take place because one of the other actors was a pedophile and sexual predator. The male actor waited for all of his coworkers to make a deal to get the project completed, threatened to refuse to “authorize” the use of the replacement actor who could wipe the floor with him from an acting perspective, and then negotiated his deal. That guy also, incidentally, has a past history of violent hate crimes against black and Asian Americans.

Welcome to America.

I have been involved in multiple social media discussions about both of these issues. Until reading a recent piece in the Washington Post, I could not exactly put my finger on what bothered me so much about the confluence of these two events. One has a much greater global impact, obviously. They seem completely unrelated. So what did I see in these events that brought out some of the old anger that had driven me my whole life, until I got this short reprieve?

It is the way we reward terrible behavior—not the way we forgive it, or look past it, but the way we reward it.

We really only do this with white men, as a rule, but it is that which infuriates me. I have listened to so many (usually men) tell me that an actor who uses others’ generosity to get something for himself is just a good businessman, that his manipulation of others’ goodwill is nothing but a pointer to how weak and ineffective and stupid the people (women, often) on the other side must be. We have to hear our political leaders defend the indefensible by saying everyone talks that way, which is not only not true, but even if it were, is not something to find admirable. An actor, I should understand, is not working for a charity project, or a nonprofit organization (and always the sneer that I hear, and have always heard, including in my professional life, when people say “charity” and “nonprofit”). People need to make money, Katy. And, apparently, people who are mediocre need to make 1,000 times more money than every single one of their co-workers, or they need to become president—not because they deserve it, but because their lack of deserving it and asking for it anyway somehow MAKES THEM DESERVING.

We did not elect an unrepentant racist and white nationalist to our highest office by accident. We did not put a serial sexual predator, a noxious misogynist, a toxic xenophobic, in the Oval Office because we as a society looked the other way. People ADMIRE those traits about the current president. The worse he reveals himself to us, the more there is a subset of society—or maybe a bigger part of it than that—that is thinking, this guy is so bad, it must mean he’s better than the rest of us, because he’s getting away with it.

He profited off of the foreclosure crisis and discriminated against minority buyers—he’s a shrewd businessman trying to get his! This other guy asked for a pardon of his detestable hate crimes so his restaurant business could be more profitable—you can’t hold that against him! Their total lack of concern for other people or how their actions impact those in close proximity to them cannot be—gasp—used to form negative attitudes towards them or think they are terrible people. Of course not! We can only use past incidences of rich white men being terrible as a way to slyly laugh about them and denigrate their accusers and detractors.

It is not only not acceptable to formulate negative opinions of (certain) people who have done selfish and destructive things—we seem to have a masochistic need to reward these people/often men. We promote them. We elect them. We defend them, when they don’t deserve it. We see a man treating people horribly in the office and decide, well, he must have some leadership skills! We put narcissists in charge of the courts, brutes in charge of companies, corrupt sycophants in charge of large school systems, psychopaths in high offices.

And even that is not enough. We have to--to justify this--denigrate people who object. People who work together or forgo salary in a collaborative moment in response to a terrible situation are idiots, weak, losers, they have no idea what they’re doing and they make terrible decisions. People who decry the depravity and sophomoric language of an abusive and racist blowhard are lazy, out of touch, liars, and in denial about their true feelings.

What is required of detractors, apparently, is forgiveness—we must forgive all of these men their sins, no matter how destructive, violent, abusive, selfish, or impotent their actions are, we must forgive. In fact, the worse the behavior, the more we should praise them, because look how far they’ve come! They’ve made a lot of money, gained a lot of influence, they are laughing all the way to the bank! Well, of course they are—because we are driving their Uber to the bank for them and thanking them for the privilege when they stiff us as they flee the car. We are rewarding them for being terrible. And you know what? We should stop.

There is no situation in which you are successful, or happy, or healthy, that should bar you from thinking about other people and, yes, even putting them above yourself. There is no situation in which you are unlucky or suffering in which you should get a pass for using that bad situation to make things worse for other people. And there is no world that I want to be a part of where charity and compassion are four letter words and greed and egomania are blessings.

I’m sure, like many things I’ve written here, this seems like a long diatribe of seemingly unrelated words that I’m using to denounce perceived injustice. And that’s probably true. One thing I have learned about myself from therapy is that it is, actually, difficult for me to feel certain things; this includes the fact that it is difficult for me to feel that my problems matter. I have written for years about cancer without really writing about it, I’ve used this forum as a way to write about social injustice issues that matter to me. I have used my experience to illustrate my points because that is actually how I view my own experiences—as objective examples that are useful to make a broader point. You might have noticed that in all of these words, there is not a lot about how I FEEL, but a hell of a lot about what I THINK. Such is the nature of the person I have become.

And why the preceding paragraph? Well, because I am going to do what I do. I’m going to use a personal story as an example of why we should not reward selfish behavior.

As a kid, as you all know, I had epilepsy. To make a long story short, when I was 8, a doctor whom I now believe was somewhat of a sadist, kept me in the hospital for a week doing tests on me like a guinea pig because he would not admit that my body was having a toxic reaction to my toxic medication. That whole story is for another day. Today, for the first time, I can say something about one of the most traumatic things that happened to me due to my chronic medical condition as a child. I am convinced that children with such conditions learn early to disassociate themselves from their bodies (and not, necessarily, in a bad way—again, that is for another post) because they are forced to relinquish control of their bodies to adults and agree to do absurd and painful things. In this instance, my neurologist decided he needed to give me a barium enema, to try to diagnose an abdominal condition that he most likely knew did not exist.

I was 8.

If you aren’t aware of what this procedure is, it is a large amount of barium inserted into your rectum. I might have weighed 40 pounds when I was 8. To get the procedure, I was put into a communal room with others who were having barium enemas, separated only by hospital curtains. Two adult women were before me. I sat there, patiently, listening to them screaming from the pain of the procedure. They both just screamed and wailed. I knew that what they were experiencing was coming for me, with no way to prepare myself for the pain, and the disadvantage of being a quarter of their size.

Then, it was my turn. The pain was so, so unbearable. It took my breath away.

And I did not utter a sound. I did not even cry, except perhaps silently.

I told my therapist this story, because I thought it represented something about the way I have handled things in my life—for better or worse. But then she asked me a question that took me by surprise. She asked me how it made me feel. How what made me feel? How the women screaming made me feel. I could tell, when I answered and saw the look on her face, that she had expected me to say “it terrified me, it made it so much worse.”

Instead I said: it made me so fucking angry. I could not believe they could be that selfish. How could they scream like that, knowing other people , including a child, were about to have the same procedure? How could they be so focused on themselves? I decided right then and there I would never be like them, that I would never be that person.

I am not here to say whether or not my reaction was the right one, or a healthy or normal one. I don’t know and it doesn’t matter. I do know this. Decades later, when I was getting chemo for my second cancer, and a woman who had refused to get a port even though she hated needles was screaming bloody murder about their IV attempts and causing a huge scene, I remembered being 8 years old. I got up from my chemo chair with the needle still in my arm and wheeled my IV stand over to a nurse. I told her to get that woman the hell out of the communal chemo area. Give her her own room. Make her family of 7 leave (most people were there with no one or one other person). I was furious. I said, I have done this 15 times. But other women here have never done this. They are already terrified. She has no right to be here, getting special attention from four nurses, while other women are silently enduring her screams, imagining how awful chemo will be.

She has no right.

And she didn’t. and he didn’t, and he doesn’t, and he doesn’t. We must stop rewarding people for being self-absorbed and injurious to other people. We must start rewarding people for being thoughtful and empathetic, for thinking of others first. And if we, as a society, cannot do that, then we, as individuals, had better get up out of the goddamn chair and say something.

Monday, October 9, 2017

Day 2,582: Run

This post, which comes after the longest hiatus I've taken since starting this blog seven and a half years ago, is written in the style of

Things I said and did (followed by)

Thoughts that went through my head

I signed you up for cross country, because you love to run and you're good at it without half trying. I encouraged you to go to the optional practices over the summer. I got you contacts, so you wouldn't have to run in the rain with glasses, though it didn't rain, not once in two months. I even managed to become part of a carpool.

This way you can start off knowing people, which should help, with you being so shy.

At the first meet I was so frustrated. "Why is she running so slow? Look, she's just laughing and jogging along!" I felt myself getting antsy and angry, but I didn't show it. I said you did great, and that I hoped you had fun.

What is my problem, why do I care? I don't, I don't care if it takes her 20 minutes to run one mile, but I care that it doesn't, and that she's slowing herself down. It makes me angry, but not at her, at life. It makes me sad. Everything these days makes me sad. What a strange feeling, to be sad all the time, after a lifetime of never being sad. It's easier to be angry. I know what to do with anger, but not with this constant feeling of emptiness. I care because she's interested in running and I'm not interested in anything anymore. I can tell how much she loves it and how much she looks forward to it and I try to think of things I look forward to, and I can't. I used to, even in the hardest times, look forward to things: working out, having sex, eating breakfast, writing, talking to people. When did everything become such a burden?

I emailed the coach after the second meet. I felt like a helicopter parent, but I did it anyway. I told the coach I thought you should pace to someone faster than you. I said if you paced with someone slower, you would slow down so as not to leave the person behind. I told her you would never say anything, that you would always do what she asked. I said that if you had someone faster to pace against, you would see that as a competition with yourself, and you would push through in a way you would not if you were told to compete against someone else. I told her I knew nothing of running, but that I knew you.

I can't even physically run. I haven't been able to run without excruciating pain since my car accident in 1984. Coach, you weren't even born then. And it's not a matter of her doing something I can't do and living vicariously through her. So many of the things she's good at are things I can't do at all. Running, sewing, knitting, the goddamn sudoku. I love that, I feel no wistfulness or regret or envy. We all need to be ourselves.

I watched your time plummet every week. You were put on "varsity" at the beginning, even with over 17 minutes for two miles. Then, right away, after I emailed the coach, we saw you get 15 minutes. 14:25. 13:40. 13:17 qualified you not only for sectionals but as the second fastest girl on the team. After every race, I marveled at how you didn't seem tired, even when it was 95 degrees. You just ignored everyone right afterwards, got some water, took a breath for a minute, and were fine. Like you hadn't just raced at all. Once you got under 14 minutes, you turned to me and said, "I guess I've found my sport."

I don't give a shit if you are fast. I give a shit that you are fast and you acted like you weren't.

"So what changed? What's your strategy now?" I listened to you tell me that you liked to hold back. You said you liked to catch up to people, to see how many people you could pass.

This is your thing, this is your survival. I know how to get out of a place, any place, no matter what. Your brother knows how to scream and rage. You know how to do this. Remember the survival game in the woods? I asked how you stayed "alive" so long. You said that you stayed with a pack of boys at the very beginning so you could get out. Then, you ran as fast as you could and hid in the woods, using your smallness to hide as you looked for the fake food and water. You told me that you figured no one could see you. And if they did, well, then they'd have to catch you. How did I raise my kids to understand survival so clearly? Or hell, how else could I have raised you, being me?

I asked if you had used the strategy that I and the coach had suggested, to pick someone faster to try to catch, and you said you had, but that person kept changing, because you started beating the girls you didn't think you could beat. You said it helped to know the person you were trying to catch.

It helps because if you get past her, you will be happy for yourself. If you don't, you will be happy for her.

I fought with you because you were so impossible for the few days before sectionals. I tried to stop myself from being annoyed with your attitude, but I couldn't.

I'm frazzled and anxious all the time, I feel like my heart is beating out of my chest. The smallest thing sets me off. I want to get a divorce or quit my job or move or all three but I know enough to know I don't want to do those things, because I know I need help, that all of this has caught up with me, not just cancer but all of it, I know that now, that it's not "just" chronic PTSD over the last seven years but probably the last 30, for too many reasons to name. And I'm sorry that I don't have the patience, but I've never had patience so that's not what I'm really sorry about. I'm sorry about all of the rest of it. But you still can't talk to me like that.

I told you to just go out there and have fun, and I meant it. I said it was so exciting to make it to sectionals as a sixth grader. Just run as fast as you can and don't worry about it, I said.

Why am I nervous?

I didn't run the course to see you at different points in the race, like your dad and brother and many of the other fans. I watched the start and stayed at the finish. I saw your teammate coming in second, and cheered loudly for her. And then I saw another red jersey in the middle distance. Oh my God, I said. That's Lenny.

Holy shit. That's Lenny.

After, we learned that you came in ninth, at 13:04, and as soon as your next teammate crossed the finish line, she found you and said, you did it Lenny, you made state! Congratulations! And she tried to hug you, as did the other girls, and you kind of half hugged in return. An 8th grade boy told you not once or twice, but three different times, great job Lenny, great job making it to state! I said, holy shit. She's going to state.

Isn't it awkward when people hug you? I know, I know just how that is. I know you don't know what to say but damn it, at least say thank you. Good, you said thank you. How many times has that boy tried to talk to you? Not just today, but all season? How much more could you be exactly like me and not like me at all?

But before that, before I thought all of that, I said, Oh My God. That's Lenny.

Here she comes. I can only think of one thing to say.



Tuesday, August 22, 2017

Day 2,534: KatyDid42

Today is my 42nd birthday. That is at least seven birthdays more than I was really expecting, 32 more than I thought I'd get as a kid. I've written a lot about birthdays, but less about other things that matter. For instance, I never wrote here, after my last post, to tell everyone who reads this blog that I don't have cancer for a third time. My suspicious mass was benign. I told my people, I celebrated, I drank, I felt such relief it isn't even worth describing, I eventually told my kids about it, and I didn't write it here because I was busy and I don't come here like I used to when coming here helped save me. And so, I don't have that much to say about 42, except I'm here, and I wasn't expecting to be, and it's as boring and miraculous as weather.

I didn't know what to say, so I wrote this instead. Here's to 42. And to 35, the age I was when I ate these grapes, right after I had dedicated so much time to cheating death. And here's to all the ages we reach when we're lucky enough to reach them. I wish you as many as you can get.

If I Could Go Back I Would
By Katy Jacob

Still not share the grapes with my children;
they were perfect and we were older and had less time.
Choose, all over again, a bowl that I knew would keep them colder
at the back of the refrigerator I would
pick out again if I was re-doing my kitchen
in the first home I would share with someone else.
Insist, impatiently, always impatiently,
that they go to bed early and then wait for the quiet
so we could sneak away to eat grapes
like we were learning to undress each other
or drinking sweet schnapps straight from the bottle
before we knew better.
Wait for the crunch but still find it surprised me.
Let him feed me, for once, one hand in my mouth,
the other on my head of new, downy hair.
Stand up, because finding a seat would take too long.
Not feel guilty when I looked in on small chests rising
in a peaceful dreamstate of not knowing what they’d missed.
Refuse to buy green grapes for three years
because I knew they would disappoint.
Choose the guy who said I guess grapes aren’t really poetic
after he read a poem I wrote about a nectarine
I’d eaten before I knew him.
Write the poem anyway, half out of spite.
Tell myself I had moments to spare, people I’d meet again,
years to search the world’s wide reaches for grapes
even if I didn’t, I wouldn’t, and it would be impossible.
Do it again, just the same, all of it, but I wouldn't.
Who am I kidding?
Once was enough.

Wednesday, July 12, 2017

Day 2,493: Counting Time

Almost 2,500 days ago, I began writing this.

Four years ago today, I received my second cancer diagnosis.

Two days ago, I found out after a series of tests that I need a biopsy of a painful lump in the exact same location as my previous two cancers. I have to wait until a week from today for the biopsy, which might as well be a year. It could be scar tissue, or fat necrosis, or cancer. A round of mammograms and ultrasounds did not help the radiologists determine which it might be, so off I go. If the biopsy is inconclusive, I will go for an MRI. They have already prepared me for that.

About three weeks ago, I found the lump myself, like I did both times previously. I went on vacation right after discovering it, like I did last time. I don't regret that.

For four years I have had no breast tissue at all on the left side. If you aren't familiar with breast cancer on an intimate level, you might not know what this means. It means I have nothing--no tissue save skin and muscle and a saline implant that is half the size of my other breast, since it exists only to hold up my clothes and I asked for it to be that way, so I could be most comfortable. How could a cancer recur here? Well, hell if I know. If that's what it is, I most likely wouldn't be considered a "local" recurrence. It would have to be in my chest wall, on my rib, or something.

For seven years, I have written that this life is not about what we deserve. It is not a contest. As Augie parroted back to me a year ago: you don't have to win. And as I would add, winning and losing isn't the right construct.

For as long as I can remember, I have been acutely aware of my body and its fragility as a carrier of my self. I've never taken credit for my good luck with my body and I've never taken blame for my bad luck with it.

For seven years, I have gone about my business to the best of my ability in the shadow of this terrible disease. It doesn't appear to want to leave me alone. I've done everything I could do and many things it seemed like I couldn't do but did anyway. I've tried. It's difficult to explain how simultaneously impossible and easy it is to live your life in a normal fashion with a loaded and cocked gun perpetually at your head. I used to care about trying to explain it, but I don't anymore. I am sure I am a worse friend than I used to be, a more contrary and pigheaded and angry person than I've always been, if that is possible, I'm sure I should have cared about things over the last seven years I could not or chose not to care about. I'm sure I could have been better, if I had been different. But I am not, and I've done my best, and I will continue to do my best.

For three days now I have been anxious and nervous but not worried, not exactly. That's a different type of emotion, like guilt or regret. You feel it if you think there's something to be done, something you could do differently to change the outcome. I don't feel that, even if many people think I should.

About a month ago, Gabe and I watched the film "Bridge of Spies." I loved the Soviet spy character. He knew he might die in a firing squad or be disappeared. He was asked repeatedly if he was worried. He responded: "Would it help?"

For almost 42 years I have been alive. For almost 13 years I have been married. I have been a mother for over 11 years, which means my children have grown exponentially in the past 7 years we were not promised to have together. I have worked continuously for at least 25 years.

Time is so short, and also so long. While I go about my daily life with my family and friends and work, that is what I tell myself.

Wish me luck.

Tuesday, May 30, 2017

Day 2,450: This is Eight

I'm a day late in posting my birthday blog for my son. But I think I can be forgiven--we were enjoying a beautiful weekend away, and I just didn't have time yesterday to finish this. So here it is.

Dear Augie:

Today, you are eight. We are up at the lake in the north woods for your birthday. The last time we were up north for your birthday, it was the first birthday you had ever had. I made you a cake, and it was the only chocolate cake you ever ate because you don’t like cake and you don’t like chocolate (except for Portillos’). Other than that, I don’t remember much. I had just learned three weeks earlier that I might not see more of your birthdays. You had to stop nursing overnight, you were the only one I cried around, and your life changed before it had really started. I’d like to think that isn’t true, but it is.

I have writers block every time I try to write about you. It’s hard to know what to say. I have said that I never used the word “exuberant” until I met you, and that’s the truth—both that you are absolutely exuberant, and that I’ve had the privilege to meet you, again and again. That’s what we do, we meet our kids, every step of the way as they become themselves.

All of the time, it’s a surprise. I’m surprised when we almost hit a deer and the first thing you say is “Isaac Newton’s first law: an object in motion remains in motion.” I’m surprised when you say you don’t believe in God but you believe in reincarnation because you think people deserve a second chance. I’m surprised and saddened at how you see death around every corner, and yet relieved that your sense of death’s reality might stop you from being self-destructive. It’s surprising the thought you put into things. This year, you decided you had to have a small birthday party, in part because you don’t like feeling overwhelmed but also because you didn’t want anyone to feel left out.

I usually write such long posts, but as I said—I get writers block with you. Maybe it goes back to that symbiotic relationship where my potential death brought you to life. Or maybe it’s because we are so much alike, in so many ways that aren’t immediately obvious. And so I could say so many things to you, but I won’t. I will just say this. I want you to grow up and grow old and change, because that is what people do, when they are lucky. But because you are only eight, and you might not remember what you were like back then, I am hoping for you that you do not change these important things about yourself:

Stay empathetic;

Keep giving your guy friends huge bear hugs every time you say goodbye;

Always look up to your sister;

Stay the loudest cheerleader on every team;

Keep singing, and dancing, especially when you’re not supposed to;

Continue to read books like they’re drugs;

Don’t forget how short this all is, and how fragile, because I know you already know.

And as I did with your sister on her birthday, I will give you the last word. For your poetry lesson in your class this year, I asked you all to write, among other things, a poem describing an everyday thing. Many kids wrote about their dogs, their siblings, or their toys, and I enjoyed them all. You wrote this:

By Augie Sterritt

Poetry is different
than any other writing
because it can be short, long
or just in that spot where
you think it’s perfect

And that’s what I really wish for you—stay right there, in that spot. You’re already there. Happy birthday, Augie.

I Love you.


Monday, May 22, 2017

Day 2,442: Cyst

It’s hard to describe. I no longer find myself inexplicably more angry and impatient for two weeks before my annual mammogram. The anxiety lasts for maybe a day before and it isn’t terrible; after all, my right breast has never showed any problems. I am not BRCA positive and I have no greater chance of getting breast cancer in my right breast than most “normal” women. Now that the breast that went wrong is gone, it’s statistically extremely unlikely…

Wait. What the hell am I doing? Am I explaining myself to you? And who are you, and why do you need an explanation? Why am I being defensive? Why do people with terrible illnesses have to explain themselves to people without them? The truth is that I know 3,000 times more about breast cancer than the average person and not by choice and yet here I am, explaining, justifying. I hate this, when I do this. And yet…

Can you blame me? After being profiled in the Huffington Post several years ago for having a lumpectomy, I read comments from readers who decided I was “vain” (even though that surgery was medically advantageous for me since it included radiation) and, even… that I “didn’t really love my children.” You read that right. I never wrote about that here, did I? But yes, a man—of course, a man—who knew nothing of medicine or cancer and less of me, said that I did not love my children because I didn’t have a mastectomy. Let that sink in for a moment. Another commenter implied that I deserved to die, since I cared more about my looks than my life. That person apparently believes you need breasts to survive—since no human being has ever died from breast cancer local to the breast, and metastatic breast cancer gives not one shit whether you had a lumpectomy or mastectomy in the first place. But every single one of those commenters believed that from reading a few lines on the internet, they knew more than people with breast cancer, and the people who have dedicated their lives to studying and fighting the disease, and that they were in a place to pass judgment. And we feel that judgment clearly, those of us who might die young through no fault of our own. And we attempt to educate, to explain. And it’s bullshit.

So cut me some slack. And let me try this again.

It’s hard to describe.

The nightmares are intense, movie-like, and seemingly unrelated. They only last a night. You can’t sleep in, because you can’t really sleep. You go about the morning, unloading the dishwasher, making breakfasts and lunch. You have taken the day off and your husband is coming with you for the mammogram. He always comes with you. This time you end up almost wishing he wouldn’t. You fight in the car, he is wholly unable to comfort or distract you and you resent him for not trying. He claims to be quiet because he’s tired and concentrating on driving and you find these petty complaints enraging. You think he is making this horribly anxious day be about him, and you aren’t entirely wrong, and it’s one of those taboo things people who have had cancer rarely discuss—when the people they love disappoint. It’s real though, and it’s hard.

Once you are finally in the mammography suite, you realize, as you always do, that he can’t come with you anyway. You go inside and are ushered through various people checking you in and then you are separated by multiple waiting rooms. So why does he come? You know the answer, which is that the very first time you ever walked in this room is the time your life changed. You never got to have a normal mammogram as a woman without breast cancer. You don’t know what that’s like, to have this be a routine test. So he comes with you, if for no other reason than someone has to drive home if you need to fall apart.

You are still in the diagnostic camp, though they scan you like it’s screening: just two pictures, nice and easy. You go back to the waiting room. And then, you are called back in, for another picture because “we just saw some tissue there and need another angle.” You ask for clarification and they don’t give it to you and you know they aren’t supposed to tell you anything. The mammography technicians are supposed to be gods of the poker face, all sympathy and no information. That aspect of the job must be much tougher than contorting breasts into metal machines.

You have one more picture taken and go back to wait. And then, a different woman comes for you. She says, “I will take you back to this area and then we will get your ultrasound going, ok?” You stop right in the middle of the hall.

What ultrasound?

Oh my God, she says. They didn’t tell you? I am so sorry-- they are supposed to tell you. They saw some tissue on the mammogram and this is just to clear it up. Oh God, someone should have told you.

You cannot even speak. You know why women get ultrasounds. It is to confirm the breast cancer everyone knows is already there. You have had two of these before, and saw four tumors, three the first time, one the second, round and clear as day on those ultrasounds. But those times—you had at least felt the lumps yourself. You knew something was there. This is totally out of the blue.

OK, you say.

God help anyone who is in the room when all you can say is “OK.”

You follow her. She is nervous and talking too much. You feel sorry for her, and realize if you lived with her or loved her, you would hate her just a little bit right now. It is in her being a stranger that her awkwardness reads like empathy. It is because she doesn’t know you that she cannot say “well this is some bullshit” or “Jesus Christ I can’t believe they didn’t warn you” or just “what the fuck.” She is just doing her job and she sees thousands of women like you. Or so you think, until she doesn’t stop talking. And you wonder what the look in your eyes looks like to her. She seems afraid of you, and you aren’t even talking. Maybe that’s it. Maybe it’s your silence that throws her off.

She describes the procedure to you. You tell her: “I know. I’ve had two of these before, when I was diagnosed with breast cancer twice before.” She changes tactics and tells you about the gel and where to position your arm. You contort yourself so that even though the computer screen is above and behind you, you can see it. You watch her and she watches you watching. She stops talking. After a while the circle comes into view, perfect in its roundness. You see her type “4 cm.” You think that’s impossible, that is huge, all three of your tumors together weren’t that large.

It’s hard to describe what you think about. First, you begin to think about not seeing your kids grow up, but it’s too hard, so you stop. You think about how you will tell your boss, since you just started your job. You wonder if you will have to quit. In the next breath you think “I will have to delete facebook.” You honestly cannot imagine sharing with anyone if this is the third time. Your instinct is to never speak to anyone again. You think about how skinny and fit you used to be and how you are all right now but not in your best shape and yet well, I guess none of that matters now and it never did. You think about the fact that if you have cancer again someone will say it’s because you didn’t have a scientifically unwarranted mastectomy. Someone will say it’s because you gained 10 pounds. Someone will say it’s because you couldn’t not drink whisky sometimes in this political environment. Or, more likely, no one will say this to you, but they will think it. Others will think how unbearable it is for someone to have cancer again and again and they will leave. You are not being cynical. It’s the truth. The cynicism comes in with not wanting to talk to anyone. You think about how you will get through the day because thinking beyond that is impossible.

You think about circles and clocks. She measures your breast and writes down the “time” of the circle. She gives you a towel to wipe off the gel and nervously asks you if you need another. You know that she knows you don’t need one, and you vascillate between feelings of annoyance and tenderness towards her nervousness. You begin to put your clothes back on and you know that your silence, or maybe just the look of silence in your eyes, is killing this young woman just a little bit. She says that she will get the doctor, the radiologist, and it will be just a minute. You nod at her, silent. She reaches for the doorknob and says, quickly and nervously, “it doesn’t always mean anything. They just have to make sure, I wouldn’t assume it’s anything.”

You look at her, curiously. You think, huh. Well, actually, the only times I’ve done this, it’s meant…something. And we all knew what. You smile, and it’s the worst thing you could have done, you can see it in her eyes.

The door closes. You think about crying. And by that I mean you think about it, intellectually. You remember crying. All the time after your first diagnosis, making you feel like someone else. In the changing room after you found out the second time—you cried then fast and furious. You haven’t cried for more than a moment in years and years. You wonder if your husband is crying, because you told him about the ultrasound.

In the time it takes you to contemplate the nature of tears, the door opens. A radiologist you haven’t seen before is standing there: a tall, handsome white guy with perfect hair and one of those big, charming, toothy smiles. “Hello!” he booms, looking straight into your eyes. “You have a cyst, there’s absolutely nothing to worry about, everything is fine! My name is Dr. X.” And he takes your hand to shake it and then holds it with both of his. You can’t help but wonder if he learned all of this in medical school or charm school or what. You get mad at yourself for wondering. You say “I’ve had breast cancer twice and the only times I’ve had ultrasounds was to confirm my cancer. So when you called me back here, I assumed the worst. And I saw what she was looking at—it was a circle.” You realize you have momentarily broken the strength of his poker face and you feel somewhat guilty as he is genuine and caring and that is why he told you right away. “I like to tell people the good news before I even tell them my name,” he had said. You wonder again how he learned that, and half hope it was from some woman screaming in his face when he did things the other way around. You reiterate: “I saw it on the screen.” He recovers well, and just pulls up the images on the computer without even trying to convince you otherwise. He shows you the mass. “You see, it is completely black inside. Breast cancer is gray, or shadowy, or white. This has absolutely nothing but fluid inside of it—NOTHING. We aren’t even worried about this at all. See, here, you are coming back in a year for a screening mammogram!” He sounds excited and shows you the piece of paper releasing you as if it’s an award. He is so earnest, and attentive. You feel a little sorry for him too.

And then, as you are leaving, the technician pauses at the door: “it’s just that we can’t say anything. We have to wait for the doctor.” She looks at you imploringly, and leaves.

You understand her now. She knew you were fine, and could not tell you. She knew how scared you were and that she had the information to give to you to alleviate that fear and she could not give it to you. And you realize: This is what she does for a living, every day. Every day she stands inside people’s fear and suffering and bears witness to it. She sticks to her part, and it is hard for her. It is hard for the doctor too. But, most of all, this is hard for you. It’s ok to admit that, and to claim it: This is hard for you, most of all.

You head over to the oncologist and he agrees to see you 90 minutes early which is unheard of, but you realize he has the results of what just happened. Your blood pressure is high, through the roof for you, and the nurse just laughs and doesn’t seem concerned at all. Your doctor comes in, this man you have been dancing with for seven years, and does the same cursory exam and asks the same questions and tells you the same things: “you look great. Come see me in six months. Enjoy your summer.” When you ask him about the cyst, he tells you it’s common, you are just starting your period this month, it’s nothing to worry about. You look at him and he at you and he says something to you that you know he doesn’t say to everyone: “They are very conservative. You wouldn’t be in my office if it was anything.” You know these are the same words another technician told you years ago: “If they were worried, you’d be on the (biopsy) table right now.” They have never messed around in this place. Unfortunately, they have never been wrong. You ask him if there’s anything else you should do, knowing he will say no, and he says “Medically…you’re fine. You look great,” and he walks out the door.

Medically, you’re fine.

That’s it, you realize. That’s his way of empathizing. His stone face and monosyllabic voice and total unconcern with any of your problems save CANCER, all of that masks the fact that he, too, does this every day. He watches women fear and suffer and die. He has to tell people they are dying. He can tell the difference between suffering you will live through and suffering you won’t. He knows the toll it takes on the people who go through it. He knows it and the technician knows it and the radiologist knows it. They just handle it in very different ways, in very imperfect human ways.

And you are reminded again that they are all very good at this and also no better at this than you.

As I said before, it’s hard to describe.

It’s hard.

Thursday, May 4, 2017

Day 2,424: Seven Years and Counting

Seven years ago, I sat down and wrote some things, because I didn't know what else to do. Here are a few of the lines I wrote back then--before I knew what was in store and that I would have to go through it all again--in no order of importance:

I never thought that I would write a blog.
The question I have now is, where is that do-over button?
You can ask me to change everything in my life, but you can't ask me to do it all at once.
I have breast cancer.
I need to tell myself and both my kids that I will beat this thing and be around to argue with them when they're teenagers, so they can hate me and resent me for some reason other than dying.
Your body's just on loan, after all, and sometimes you go through a major financial crisis with it.
After all, the world keeps spinning.
It was strangely comforting to find out that people are still assholes.
I have never taken my health for granted.
I've dodged a lot of bullets and lived a happy, mostly healthy, life.
I don't want to think my luck has run out.

I had no idea what to say, what to do, what to write, what would happen, who I would become, or whether or not I would survive. I had no idea that I would have to do this twice, at least. And yet, looking back, it seems that I laid the framework on that first day for everything I was going to try to say over the next seven years. There was just no way for me to know that at the time.

I never thought that I would write a blog.

And, looking back, I'm not sure I was ever very good at it. Is this venue really a blog? These long rambling essays, which always appear to be about one thing but are in fact about something else entirely--usually the concept of false meritocracy, and how no one "deserves" the life they lead, good or bad, and often about how what we should be striving for is that one perfect moment of grace, not of beauty or success or even goodness, but grace, making ourselves lowly and unassuming and understanding--are these blog posts? Does it matter? I never thought I would write a blog, but I never thought I would need to. This blog did so much for me. It allowed me to write down stories for my children, to write long love letters to them. It enabled me to tell people what was going on with my health without having to go through the painful process of actually talking to them and seeing the terrified looks in their eyes--or, worse, the discomfort. It brought me closer to my husband, as I said things here that I would never say out loud, not being overly sentimental. It taught my family and friends things about me that they never knew, because I kept so much to myself all my life. It helped me understand what the hell had happened in my life, and why it mattered. I wrote about one kind of trauma and learned how to write about all the others. This blog made me feel that I was good at something. This blog gave me a reason to write about things that seemed small or absurd--stories about people puking, kissing my gynecologist, waiting for an elevator, talking to a technician, and so many others--that were actually some of the most profound moments in my life. This blog has provided me with a lot of opportunities for last lines, and I'm good at those.

The question I have now is, where is the do-over button?

Ah, but there isn't one. And if there was, I know now what I didn't know that I knew then: I wouldn't use it. Any guilt or remorse for the way I am and the way I have behaved, any sense of how I should have been better, has never come to me. I didn't come here to apologize.

You can ask me to change everything in my life, but you can't ask me to do it all at once.

This is one of the most adult lessons of all. We have to learn to suffer and celebrate incrementally. This is especially true if other people rely or depend on us. We can lose it, but not entirely. I wrote about my struggles in this blog, but I downplayed them at the same time. I wrote about cyclical depression, and even PTSD. But in other ways--I didn't. I didn't necessarily detail how it felt to feel so adrift, all while having to keep so much together. I never wrote much about the absurdity and the physical difficulty of starting a new job based in another state just weeks after an amputation and into the first round of chemo. I didn't write about how I never drank before cancer, or how I felt like leaving everything behind. I had trouble relating to people, who had trouble relating to me. Even when I did write about the hard things, I rarely just said it: This is hard. This is hard. I don't know how to do this. No one knows how to do this, or anything else. We're here for a minute and then we're gone and that is true all the time, every day, and I am always aware of it and always have been and it's hard. I had a mark on my back and a bullet at my head and I learned to live with it. I've always lived with it, which helped. But you walk differently, you talk quieter. You change. Some people never forgive you for it, but death is so close you find yourself unable to remain angry with them. You remain angry in general, however, all the time. Your anger defines you. Wait, that's not true. My anger defines me. I won't generalize to you. You are probably an altogether lovelier person than me. I might have had to do things differently, but I did things. I, for better or worse. That means that I stayed angry and stubborn and impatient. If I have good qualities, I think I maintained those too. I morphed into the Katy I am today, but there was a core Katy there all along. I changed, but incrementally.

I have breast cancer.

If you haven't had to say that you have cancer, you don't know how hard it is, and I hope you never learn. I said it right away, and I was never in denial about it. It might still be true about me. I hope not, but I don't know. Breast cancer changed my life, in almost every possible way, and didn't. Breast cancer is a disease, not an injustice, it is a thing that happens to so many people that there is no reason it wouldn't happen to me. I have always said that, from day one, and I still fully believe that. The tragic things that happen to people happen to me, they happen to you. They don't happen to someone else. We are all someone else. It isn't a game, and it isn't a contest, and the goal isn't to win, it is to survive and to feel empathy for others.

I need to tell myself and both my kids that I will beat this thing and be around to argue with them when they're teenagers, so they can hate me and resent me for some reason other than dying.

We're getting there. They are 11 and almost 8. Can you believe it? They were 4 and 11 months old when this started. Their lives were forever altered by having me as their mother. My son in particular does not know how to have a mother who did not have cancer. His frame of reference is built on that. His night terrors and anger and wisdom beyond his years come, in part, from that. My daughter thinks about resilience differently, and often. She is overly fond of long hair. She doesn't seem to give a damn what other people think about anything. I think some of those things are related to growing up with me. My kids aren't afraid to talk about death, and dying. They don't believe in God but my son believes in reincarnation, and there are so many things about him that make me almost believe it too. My daughter believes you can talk to people when they're dead. But why wouldn't she? I've written here that she has told her brother: "She will always be our mom. Even when she's dead." But she also yells at him for coming in her room unannounced and is getting moody in her preteen years, and he is always going on about how "we don't understand what it's like" so I feel like we are making progress, and they have a mom, not a cancer mom, after all.

Your body's just on loan, after all, and sometimes you go through a major financial crisis with it.

This--this has been a defining theme in my life. Every part of my body has stopped working at some point, through cancer, epilepsy, my car accident: my legs, brain, heart, arm, lungs, hair, my eyes. I don't see a body, of any kind, whether conventionally attractive or not, as anything but a vehicle for mySELF, which is not defined by my body. My body is not a temple or a work of art. It is not a battlefield. My body has hurt and people have hurt it. I have felt great physical joy and accomplishment. But my body is just a body, and it is not here to be celebrated or condemned outside of the context of being the shell that means I am not dead. I do not take credit for it nor do I feel guilt because of it. I do not feel inferior or superior because of my body, and neither should you. My health is a stroke of luck, along with my illness. I no more deserve to die than I deserve to live. This isn't about what we deserve.

After all, the world keeps spinning.

It does, no matter what is happening in your world, which is impossibly small and not altogether interesting. So...write about the wider world, write about the people you witness. Take your place in this dizzy messy space, and learn to make light of it.

It was strangely comforting to find that people are still assholes.

They still were, still are, always will be. It gives me something to fight.

I have never taken my health for granted.

And neither should you. I've cheated death five times but I don't feel proud, or cheated. The first time I was four. The second time, nine. The third, 24, and then 34 and 37. The only thing I learned is that any age is too young to die, or that at least I hadn't yet reached an advanced enough age not to feel that way.

I've dodged a lot of bullets and led a happy, mostly healthy, life.

I said once that all my life, I've looked over my shoulder from the passenger seat of the getaway car, wondering when the gig would be up. I can hear the sirens in the distance, but they haven't caught up with me yet.

I don't want to think my luck has run out.

I didn't want to think it then, and I don't want to think it now. I didn't think 34 years was long enough, and I'm not about to think that 41 years is. There is no reason for me to be here when so many others who are just like me are dead. It's a harsh truth, but a real one. There is also no reason for me to not live. There is no reason for any of it. Our purpose is not to have a purpose, but to find one. Or maybe that's just more mere-mortal reaching. All I know is, I have lived seven years since learning I might die much too young. And even if that still turns out to be true, I have had those seven years. In that time, my son went from being a baby to being a second grader, my daughter started out a preschooler and is soon going to enter middle school. I've lived to see my kids learn how to do about 95% of the things they will learn how to do in their lives. My marriage has lasted longer after cancer than it had lasted when I was diagnosed. I have bought two new houses in these years, started three new jobs, somehow managed to continue to move up in my career, though honestly, of everything, I don't know how I did that. I spent a year not being able to read a single book in 2014, with extreme chemobrain, and I just...hid it. I don't know how I did that, and my employer never knew. But I digress. I made some wonderful friendships in these years, and lost some too. I lost my hair and grew it back and cut it all off again, and I'm done with it, I'm done with the time and the energy hair takes. I went through menopause and puberty. I bought my first car. I visited cities for the first time, and took my kids with me. I got married again, to the same person. I walked out onto frozen lakes and stood inside of dinosaur footprints millions of years old. I learned how to ride a bike, row a long, skinny boat, make a perfect Manhattan, and cry.

I wrote a few things.

One of the things that I wrote is the first 25 pages of a novel I doubt I will ever finish, though I would like to, before I die. I wrote it, like everything, for my kids. I want to let them know that if they don't remember anything else I told them, I still believe that children are just small versions of adults, with all of their own complexities and suffering and joy. I want them to have something to read that is written not for children, but about children, which is different. I don't know why I want them to know this, when they have not yet read any of these words, and I haven't finished or even gotten into writing the other words. I always said that if I wrote a book, I would just write one. I only ever wanted to write one. Maybe I've become superstitious, and I just haven't wanted to finish it, because I can't imagine both being alive and having done that. I don't know. My book has a great title, a perfect ending, a remarkable backstory, and very little in between except a few good lines. Towards the end, I remind the readers/my kids:

Because when you are imagining, you might as well imagine something worthwhile.

The same could be said for remembering.

Seven is a lucky number. They all are, when they're years.