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 stayed...me, 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 yet...it 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.