Thursday, July 12, 2018

Day 2,858: A True Story

Today as I sit here writing for the first time in six months, I wonder if I remember how to do this.

And I realize that I do, but that I am not going to do this the way I did it before. That is probably as good a thing to write about as any, after all this time.

I have been meaning to write for so long, but I have had no real desire to do so. Today seems important, though.

Five years ago today, I was diagnosed with a rare and aggressive form of breast cancer--for the second time. I had survived past the crucial three year mark with no evidence of disease, albeit barely. I was re-diagnosed 3 years and 2 months after my first diagnosis.

You could go back and read what I wrote at that time. For the first few months of my new cancer, this blog took on a life of its own for me. I have never been well known, but in comparison, it seemed that so many people were reading it. And yet...well, that is what I will write about today.

Five years is significant. Five years in the world of triple negative breast cancer is a milestone. Five years is a cause for celebration. Five years is a Thursday. Five years is a busy day at work. Five years is my kids watching Netflix while I write this. Five years is it's too hot to cook. There is no way to explain to friends, family, or strangers what five years of life you didn't expect to get is like, or what it is like to not expect it, or how it has changed you, or why it matters or doesn't matter.

Or is there?

In the blog post before last, I wrote about my depression. Or, at least, I used my depression as an artistic vehicle to tell the story I wanted to tell. I am reading a book right now that I am truly in love with, called the Girl Who Smiled Beads by Clemantine Wamariya. It is the story of a girl who survived the Rwandan genocide at age six, became a refugee in seven different countries in seven years, eventually landed in the Chicago area and went to Yale. But it also is not that story at all, because that sentence tells you nothing. It is so well-told, so real in her rendering of how she actually experienced the events that turned her life into a cruel, mundane, beautiful absurdity. It is a story I relate to, when she describes her coping mechanisms, and that I feel guilty for relating to, though not really, because guilt is an emotion I lost somewhere along the way. In this wonderful book, the author says:

I told a true story. I told a story that conveyed nothing.

And that--that is what I did, in some ways, for almost 8 years when writing this blog. I told true stories. I never said anything here that wasn't true, real, and based on my own experiences. And yet. What did I say about myself? What did I say about my family, my disease, what did anyone learn? I used my experiences to make the points I wanted to make--about society, about illness, about death, about injustice and the false meritocracy. I wrote words that moved people and inspired them and helped them even, most importantly, in the case of women with cancer who were aided by this blog. I wrote words that created a space between my actual life as I was living it and the part I was willing to share.

I told a true story. And in some ways, I told you nothing.

I wrote about my depression when I wrote about my daughter running. I sort of explained how medication brought me to a point of being able to do something useful about the 30+ years of PTSD or whatever you want to call it that I have learned to function with, that I have used to my own benefit. It was only when it became unmanageable to need to escape all the time--when I had a third cancer scare that turned into nothing, and I had prepared myself for a fight that didn't come, and then I had no idea what to do--that I needed intervention. It is one thing to have a fight and flight response when it helps you, even when you are fighting and fleeing your own body. It is another thing when you are sitting in your cute house in a bucolic neighborhood with your charming family and stable job and husband who adores you and that instinct is in hyperdrive. What is there to fight? To flee? That is how you find yourself refusing to eat, crying uselessly on the couch, wanting to get a divorce, quit your job, and move out of state all at the same time--just to escape.

I wrote about that, but not really. I don't really know if it's worth writing about--maybe it is. One thing that is worth relating is a conversation I had with the psychiatrist who helped me figure out my dosage. I have a therapist, my gynecologist got me the prescription--but I needed an expert to help dose me. So I met with this woman. She needed to know something about me. She asked me some questions. We didn't have much time. I figured I should give her the major highlights, leaving out almost everything that I thought was relevant. And so I told her about just the physical trials related to accidents or disease. I said well. I had faced death five times by the time I was 40, twice by the time I was 10. I sometimes wonder if I have a chip missing because it is hard for me to feel certain things. It is easy for me to feel empathy and hard for me to feel sympathy, for example. I don't know if it matters that I am like this. It is hard for me to feel that some things matter, including me.

And this quiet British woman earned her title and her salary by breaking something down for me after the long pause that followed my introduction.

Well, I wouldn't expect you to be different. It is like when people survive wars and are then expected to focus on regular things, or when people experience intense pain and cannot sympathize over a paper cut. You do not have a chip missing. You just are not living with the same illusions that protect most people from feeling as you do.

What illusions? She began:

The illusion that life is fair, that you are in control, that you won't die. You know these things are false, and you know them every day. Many people still have the safety of those illusions.

And in my mind I continued: the illusion that someone will save you, that you are important, that anyone isn't important, that suffering isn't real, that people get what they deserve, that things will be all right.

If this sounds depressing, understand this: it isn't, at least to me. This is not pessimism. This is an understanding of how suffering is the reality that ties people together, and that suffering is unique, personal, constant, global, and uninteresting. The statement of illusion is a soundbite describing this blog, and why I wrote it--and why I stopped.

I stopped writing because I no longer wanted to write a true story, but one that revealed nothing. And yet, I could not imagine that anyone would want to read a true story that revealed anything real about me. I also did not want to give up the right, the gift that I have, to craft my true story to read as I want it to read without allowing anyone reading it to get inside me--inside my body, my brain, my memories, my stories. I have always written words that allow me to keep my experiences, memories, and sense of self as mine. You cannot read my words and tell me my story isn't true, because I do not give you enough rope to hang me with. You cannot read my words and tell me that you believe my words but think they are irrelevant, because I crafted them to make it clear that I am not asking your permission for relevance.

I am expert at this--and for good reason. The closer I got to telling a true story that revealed something of me, the more it alientated people from me. I would write something raw and I would get messages: Katy, you sound angry. Katy, I hope you get back to being yourself. Katy, I stopped reading because you got away from sounding like a fighter.

And I wrote anyway, because I was writing for an audience of two. I was writing a memoir and a life lessons manual for my children. This had the added benefit of the fact that neither of them, to this day, has ever read a word of this blog. So I was writing for an intimate audience whom I expected to read this once I was dead.

Obviously, if I stop doing that, this will be different.

And I am going to try.

Because I am still here--8 years later, 5 years later. This country is now a living and breathing example of all of the illusions that none of us can afford to live under anymore. And if life is to be absurd, and unjust, and out of control, and if we are all to suffer but not to equal extents and if we are all adrift but some with anchors and some without, why not write a true story, one that conveys something?

This is my explanation. That is what I am going to do. It might be self-indulgent. I don't care. The self is what we have left, and what we never had. It's worth writing about, especially when its existence in the corporeal world continues to take me by surprise.

I'm going to try to start writing a true story--about me. If nothing else, it will be a new escape.

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 then...you 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.

RUN!

Run.

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:

Poetry
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.

--mom

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.