Saturday, April 27, 2013

Day 1,039: Mommy, I Don't Want You To Die

It's the moment that every cancer survivor with young children dreads. I had just put my exhausted kids down for the night and sat down in the office to check email. A few minutes later, I heard a door creak open and I shouted, "Go back to bed, Augie!" But he was asleep. My daughter was crying, saying, I'm scared! I told her to come in and tell me what was wrong. She said through her tears:

Mommy, I don't want you to die.

My heart caught in my throat. She has never said this to me before, not when I was going through cancer treatment, not ever. I know she has thought about it, but she's never said it out loud. Here is the conversation that ensued:

K: What? Why are you worried about that? I'm not going to die, at least hopefully not for a long time. Everyone dies eventually, but we hope we have a good long life first. Why are you worried?
L: (sobbing): I don't know.
K: Well, is it because I had cancer?
L: I don't know.
K: Honey, I'm not dying.
L: I don't know I just worry because the gym teacher said that if your heart rate gets up too high, like when you exercise, you could die, you could just collapse and die and that happened to someone he knows!
K: (pissed that the teacher would talk to first graders about this): Well, yeah, I suppose that's true, but that would only happen if something is wrong with your heart. And nothing is wrong with my heart.
L: How do you know?
K: Because I know. Remember when I did chemo? They gave me a test, called a MUGA, to check my heart function. They don't let you do that kind of chemo if you have a weak heart. They told me my heart was perfect. I saw the test result. And then, when my heart was acting weird due to chemo--remember that? (she nods) Well, my heart was beating like 130 times a minute when I was lying down! And I was fine. If your heart is beating too fast, your body knows to stop, unless your heart is sick. But even then you don't necessarily die. Remember my cousin J? (she shakes her head). Oh, ok, well, anyway, when he was born his skin was blue. They needed a helicopter to fly him to a hospital and do emergency surgery on his heart. They thought he wouldn't live through that. Then they thought he wouldn't live through the week, through the year, and on and on. I was your age when he was born. Do you know how old he is now?
L: (doing mental math): 30 or 31?
K: That's right. A lot of bad things can happen to people and they don't die. And sometimes people die without anyone knowing it could happen, and that's sad, but it doesn't happen that often. We all have to die, but not for a while. I mean, I could live to be even older than twice the age I am now!
L: And when you're twice your age I'll be like 40.
K: 44, kiddo. So we all need to try to take care of ourselves, like eating right and exercising and SLEEPING, and adults shouldn't make you worry about stuff you can't control. He should be telling you about how to be healthy because it will make you feel better, not because you will be worried about people dying! Now do you want me to tuck you in?
L: OK (not crying anymore).
K: I love you. It's too late to read. Go to sleep.
L: OK. I love you too.

And when the moment came, somehow you knew that the way to ease her mind and make her feel better was not to act as if disease wasn't real, but to acknowledge that it is, and yet people can still survive. You knew, somehow, that denying death or talking about it as if it wasn't imminent or permanent would not be a comfort, so rather than pretending that death wasn't coming, you hugged her and said that it is, but not yet, not tonight, not yet. And she slept like a baby until she woke early in the morning from the sun streaming through her window. She was the first to wake, and you were the second. You stopped into her room for only a moment to say that you were going to the gym. She didn't even look up as she said, ok mom, I'm not hungry yet, I'm just playing with my robots. She looked up at you for just a second, and you acknowledged each other, not as mother and daughter but as two people living impermanently and perfectly in the world, right now, on a sunny day in spring before anyone else had roused themselves from sleep.

Friday, April 26, 2013

Day 1,038: Lump

Three years ago today, I felt a lump in my breast.

I was very perplexed. This “lump,” which really felt more like a thin, hard line, seemed to come out of nowhere. I was a nursing mother, still nursing or pumping milk for my 11 month old son at least five times a day. That meant that, unlike most women, I was constantly manipulating and feeling my breasts. And yet, I had never felt this before--and the way I found it was nothing short of comical.

My husband and I had just made love. He was telling me how beautiful my body was, and, like many women, I had to find something to criticize about myself. I grabbed my breasts and said, but look at these! They’ve gotten so small! They were so huge when I was nursing Lenny! What the hell? And…

Oh wait, do you feel that?

He did. Later he would tell me that he had felt it a few weeks before, but we were busy having fun with each other so he didn’t say anything, and he assumed it was just a clogged duct or something, because he never felt it again—until three years ago today.

I didn’t sleep much that night. Once you are aware of something that you were not aware of before, that thing looms large in your consciousness, and suddenly, you are amazed that it hadn’t been glaringly obvious. That night was a Monday. The next morning, I called my OB/GYN and said I felt a lump in my breast. They told me to come in—that morning. I was, frankly, shocked at how quickly they addressed what I assumed was nothing.

The doctor also thought it was nothing. He gave me an extensive breast exam and said that he felt what I felt, but it was probably a clogged duct, or the beginning of mastitis, but that “with breast issues, it isn’t worth it,” so he gave me an order for an ultrasound anyway. He told me to call him when I got the news that everything was fine.

I’m sure he’s never said that to anyone since.

Of course, everyone knows now that it wasn’t nothing. A week after I felt that hardness in my breast, I had that ultrasound, which turned into a mammogram, another mammogram, and 7 core needle biopsies all on the same day. My mom was with me at the hospital, because my son had the stomach flu and my husband had stayed home with him. The day after the biopsies, I received that call—the one that told me that it wasn’t nothing.

It was three cancerous tumors of a rare and aggressive type.

So this whole thing, this whole process, started that day three years ago.

People assume that it’s over. Maybe it is. But there’s a much higher likelihood of me having a cancer recurrence or dying of cancer than there is for you to have a heart attack or get hit by the proverbial bus tomorrow. When I continue to feel short of breath and my breastbone continues to hurt, I have a responsibility to call, not a general practitioner, but an oncologist. I have to listen to the physician’s assistant say that she thinks I might have anxiety. I don’t bother to explain how many aches and pains I have that I never mention—including excruciating pain in my pelvis at some times that would force many cancer survivors to go into full panic mode, especially because the pelvis is a very common site of breast cancer metastasis. But I am not a normal cancer survivor in that sense—cancer is not the first thing I’ve had to contend with in this life. I am used to that pain. I don’t panic with every headache, I don’t worry every time I’m so tired I fall asleep on the couch at 9 pm. I haven’t done anything drastic with my life and I don’t walk around scared, sad, or lost.

I am somewhat relieved to hear that the oncologist probably wouldn’t order a scan for me yet, even if my breathlessness and pain doesn’t go away. It gets better at times, it gets worse after I do chest exercises, and it’s entirely possible that I’ve pulled a muscle or that it’s chostocondritis, which is relatively common after radiation to the chest (and chemo).

I know this, but I also know that it could be metastatic cancer to the lungs or sternum, which would be a fatal condition. I walk around with that knowledge and then shrug it off, and it’s hard to explain to anyone who doesn’t have to do that regularly how impressive that feat really is.

I want to stress that it has been three years since I felt a lump in my breast, but I have been a breast cancer survivor for many more years that that. At the time of diagnosis, I was told I had probably had cancer for three to five years. That means I had cancer the entire time I was pregnant with and nursing my son. It’s possible I had cancer while I was pregnant with my daughter, though I am convinced that my cancer formed either with the breast changes of my first pregnancy or shortly thereafter.

While I had breast cancer, I began raising my first child. I changed jobs. I formed and brought another human being into the world. I ran circles around my husband with my manic energy. I am 37 years old, and it is quite probable that my entire thirties have been spent living in harmony with or in opposition to CANCER.

That is not something that anyone expects in the prime of her life.

It is the smallest things that have the biggest impact—especially if those things are 0.6 cm, 1.1 cm. and 1.6 cm in diameter respectively. As I said back on December 10, 2010, when I finished cancer treatment:

Back on May 4th, three small, aggressive, rare-type tumors hiding insidiously inside my lactating breast were taken on by the following:

7 core needle biopsies
3 regular breast ultrasounds
1 3D breast ultrasound
14 blood tests (at least)
1 chest X-ray
6 mammograms
1 sentinel node mapping
2 wire placements in the breast
2 surgeries (three if you count the sentinel node biopsy) under general anesthesia
8 rounds of chemotherapy via IV
6 Neulasta shots
2 Neupogen shots
2 visits to the sleep clinic
3 CT scans
1 ecchocardiogram
5 EKGs
2 trips to the emergency room
1 48-hour hospital stay
1 echocardiogram
3 tattoos
33 rounds of radiation
19 acupuncture treatments
58 blog entries

And too many side effects, manual breast exams and over the counter and prescription drugs to mention.

I wish they had let me keep the tumors so that I could laugh at the disparity of all that needed to be done to combat some lumps that when put together were the size of maybe two pieces of popped corn.

I will never be able to go back to being the person I was on April 26, 2010. That person did not know what was coming, what would change, and what would be lost. She also didn’t know what she would hold onto—the core of herself.

Three years ago, I felt a lump in my breast, and though I did not know exactly what it meant, I knew that things had shifted, and that it was possible that the lighthearted moment of self-criticism I shared with my husband would forever be marked as the moment that denoted before and after.

Wednesday, April 17, 2013

Day 1,029: Ten Years Later

Today is the tenth anniversary of the day when Gabe and I met on a blind date. Today, he guest-wrote the blog. Here's to more sets of ten years, babe!

Ten Years Later
by Gabe Sterritt

Ten years ago, I was alone.

My circles of friends, workplaces, and daily routines had failed to introduce me to anyone I thought worthwhile pursuing… at least, anyone I thought worthwhile who would give me the time of day. At most, they qualified on the first two but the magic just wasn't there.

I'd joined a couple of online dating sites and spent time drinking too much at bars. Somehow I thought the former proved me an intellectual and the latter made me endearing. I remember in the darkness of December the year before, driving with my aunt back from Lincoln Mall, and declaring, "I don't think I'll ever meet someone I like enough to get married." She reminds me of this woe-is-me proclamation to this day. A month or two later I saw a profile online of a lady who looked really sharp, put together, drinking - it was probably coffee but in my mind it's always a martini with a fancy twirl of something citrus poking out the top. In the online profile, the friends are cropped away. I was too intimidated to write to this lady, she was out of my league. I was, after all, a small-fry technology consultant who made enough to get by and spent my days exercising, reading, and helping my mid-eighties grandmother around the house. That's right, after September 11th and the economic collapse of 2001, I fell so hard I had to move back in with my GRANDPARENTS.

A month or two goes by, the seasons change from the dead of winter to the budding spring, and another profile piques my interest. This woman looked really down to earth. And she worked for a THINKTANK. So I could strike up the conversation on that basis - not some smarmy line that failed to cover my superficial attraction.

This down to earth woman actually replies to my interest in her job. The conversation goes back and forth a couple more times, but is cut short by an ultimatum: "I don't have a lot of energy for this online thing so if you want to meet in person for dinner or something, fine. Otherwise, let's not waste precious time." Good, someone who believed less in yanking people's chains than I do! So we quickly settled on a dinner date at a restaurant near her place in Oak Park, "New Rebozo." The food was good, the conversation engrossing - she liked to talk and I really enjoyed listening to her stories. I could say a few things that she seemed genuinely amused by; and we stayed for another 40 minutes after DESSERT.

Outside it had started to rain, and I had brought a DVD of a TV show I'd recorded for her, so we went back to my car and I offered to drive her to her car. Sitting next to me, spattered with raindrops and looking so alive, I had to kiss her. Wow. We agreed on a second date… After we parted ways that fateful date ten years ago, I called one of my best friends and said, "I don't know where this is going to go, but I think she and I can have a lot of fun together."

Our first trip together a couple months later clinched it when, watching the sun set behind the hills to the west across Devil's Lake in Baraboo, Wisconsin, Katy broke the silence by simply stating, "Isn't it funny to think that it's actually us spinning away from the sun which isn't moving at all?" Wow. She understands basic orbital mechanics and relative motion! I swoon.

The rest, as they say, is history. I knew my "type" and Katy met all the qualifications. Smart, good natured, no nonsense, just well put together. As subsequent dates blended into just spending time together she verified the last qualifier I was seeking - she really seemed to appreciate me for who I was.

It hasn't all been love and pancakes, however. We've had challenges with jobs, homeownership, and parenting. And the death of beloved grandparents. And… I've been a jerk just because I get uncommunicative about my needs and space, so many times. We've fought, terribly at times, and over some of the most ridiculous things. Seriously, once, there was a box of CEREAL. I don't remember anything else about it. On top of being ridiculous, I've been really positively stupid on a few occasions.

Then… Katy finds a little odd bump on the side of her left breast. I feel it too. I agree she should get it checked out, and in her usual fashion, she wastes no time. She's directed to get a precautionary ultrasound, which she does early one Monday morning. That's escalated to a mammogram, in the same day. I'm home with the almost one-year-old boy who is taking a nap when Katy calls to say that the mammogram suggests immediate biopsy. I try to be positive, tell her it's "just to be safe." I hang up the phone, and collapse onto the basement floor in a heap, bawling, knowing that history has just been rewritten. That happily-ever-after ending that always seemed just around the corner if only I could get my act completely together vanishes like a castle in the clouds.

That was our lost year… so maybe this is really only our ninth year of having known one another because our lives and how we had to survive that cancer year made us be so different from who we wanted to be. I was scared to death that I would breathe some normally harmless germs on Katy while she was at lowest immunity after chemo and that would be it. Jim Henson died from a cough… why couldn't a kiss kill my love? There was the terror that some random medication prescribed to help her would have unanticipated side effects. Or the chemo itself, which put her in the hospital with heart palpitations would do her in. Or that malignancy had spread… how many ways can a KatyDidDie?

Finally, after that long hard winter that started just after spring, the lost summer and forgotten fall, a new spring dawned, and Katy's body budded anew. The induced menopause vanished. New hair styles as it grows back in, but the same old Katy… Almost. There's a deep, persistent doubt in those eyes now that was never there before.

Another year goes by and we're in a new home, literally twice the house of our old place, well lit with nary a shadow, save that of cancer when Katy coughs or experiences an unexpected pain or just feels too tired. But the kids are growing up quickly and we've got a summer of swimming and work to catch up on and everything seems normal. The year races by…

And I'll have to leave you with a story unfinished - because this is where we are. Our tenth spring together. A mostly happy marriage and one without any underlying issues besides two people just set in their ways. Two kids we just can't keep our eyes off of, they entertain us and make us proud and make us really earn our all-too-brief times off from parenting. A home as welcoming as we ever could have imagined. I think the cancer scared off some friends, but we still see people from time to time. All the trappings of modern success, as we'd define it - achieving the quality of life we've sought, rising above the poverty of our respective youths, the American dream. I regret the time we've wasted fighting and if a wish could make the cancer a never-has-been, I don't think I could ask for anything beyond the happiness that knowing Katy has brought me.

Here's to ten years of knowing you, babe! Thank you for making my life better, richer, fuller than I could ever have hoped it would be. Whatever the future brings, being by your side is the only place I want to be.

Saturday, April 13, 2013

Day 1,025: "Cancer Ennui" or Depression?

One of my all-time favorite google searches that led someone to this blog was "cancer ennui." That phrase is so apt! Going through this process brings a decent amount of absurdity to your life and makes you suddenly appreciate words like ennui and verklempt. And what is this process? Well, it's being really sick, dying even, and not having a clue. It's cutting, poisoning and burning what appears to be a totally healthy body because if you don't you will probably not live past 35. This process means dealing with the aftermath of those decisions. It's losing friends and feeling isolated. It's going back to feeling healthy only to live every day with the knowledge that you will never be "cancer free," "cured," or "in remission," because all that there is for your cancer is the notion of "no evidence of disease," or, more accurately, "you could still have cancer in there but right now we can't see it and if it has spread to a distant part of your body we cannot cure you and you will die sooner or later but probably sooner."

And, remarkably, most of us do pretty damn well living with that reality. I have felt sad, scared, angry, wistful, resentful, and a lot of other emotions as a result of cancer. It's fair to say, however, that it has never made me depressed.

That's surprising, actually. Cancer is depressing. It is especially depressing when you are at a stage in life that should be about just about anything other than cancer. But something being depressing is different from depression itself.

I know this, because I am going to admit to something here that I haven't admitted to anyone over the past year until last night. I am battling depression on and off, and it is related to cancer, but only tangentially. And it's really, really hard. It's especially hard because it's new to me. I have always been a fairly happy-go-lucky, content, even-keeled person. I have been called "ultra-sane." I get pissed off and cranky, but I don't get depressed.

I've written about the absurdity of going through puberty in my 30s as a result of coming out of chemo-induced menopause. I've written about how my new, short, perfectly regular cycles have brought with them a huge range of PMS symptoms that I've never had in my life, even though I got my first period at age 11. One of those things, I've figured out, is a regular depression related to hormone changes in my cycles.

For a few days every month, I experience this crushing feeling of hopelessness. I am not talking about being irritable or moody. I'm not talking about having cramps or being bloated and feeling fat. Suddenly, I am useless. I have no friends. I'm a terrible mother. I'm worthless at my job. I've never been good at anything I've ever tried to do, except maybe writing, but even that is questionable. My kids don't like me. My husband doesn't really love me, he just wants me for sex. I will lose my job and sit at home doing nothing but make the world a worse place to live in. The pain in my chest is mets to the sternum. I won't live to be 40. My life is over.

Notice I did not say that I FEEL these things. For those days, these things are absolutely true to me.

Even if I chart these feelings, use my intellect to try to discern a pattern, I cannot escape them or think that those feelings of worthlessness are feelings when I am in the middle of it. When those days happen, that is my truth.

I've recently realized that these days coincide with extra pain in my chest, extra feelings of breathlessness, and extra weight. On the worst day or days I weigh the most. Three or four days ago, I weighed 121 pounds. I know that is not heavy, but it just gave me one more reason to hate myself. I am not just worthless but ugly, fat and covered in stretch marks and scars and lopsided breasts and I'm just a fucking mess of a woman. Then, the next day, I weigh a pound less. The day after that, I pee about 72 times and lose another pound and a half. The next day--today--I weigh under 118 pounds and I feel, well, normal.

I don't feel normal because of my weight, or because all of that water that was crushing my lungs has left my body. I feel normal because I am no longer depressed. Now that I feel normal, I can see those previous feelings as the abnormal part of life, not the reality. I have some perspective that is just lost in those moments of loss.

My life is the same. The things that are disappointing and hard are the same. A hard week at work is a hard week of work. My mammogram still looms. All of these things are normal parts of living life, well, except for the cancer part. But even that is the same--I had cancer or could have cancer on days when I'm feeling normal and days when that alien being invades my body. The difference is in how I interpret those things.

I still worry about mets in my chest, but it doesn't seem like such a foregone conclusion that I tell my husband that I need to get a pet scan and a chest xray because I know it's bad news and we have to turn in the life insurance policy and I'm going to die. I don't feel such sadness when I see my kids that I am unable or unwilling to put them to bed at night. I don't cry while taking walks, while sitting in the house alone, I don't cry at all because goddamn it, Katy Jacob doesn't cry and that's one of the things that makes her Katy Jacob. If Gabe comes up to me and kisses the back of my neck when I'm washing the dishes, I smile or playfully swat him away. I don't say things to him like "you're only nice to me when you want to fuck me." I see my totally normal for a working mother social life as a good trade from the times when I was younger and still busy but mostly with people my age.

I don't have an intense desire to engage in what would be self-destructive behavior if I was a different person or in a different stage in life. During those days of depression, I could be talked into any bad habit out there. I want to get mind-numbingly drunk. I want to have sex, almost desperately, sadly. I want to have a cigarette, drive a car too fast, leave everyone I know and move to a cave in Mexico. I begin to understand why other people do drugs. I want to do anything that will make me feel something other than that hopelessness, anything that will enable me to see my body as something other than an aging and diseased bag of bones. I want to feel life in the face of the reality of death, which looms over me as surely as the feeling of metal at my temple or the coldness that coursed through my veins courtesy of the Red Devil.

In the confines of my life and my responsibilities, of course, I don't actually do these things--not most of them, anyway. I take walks away from the family, I work out too much or not enough. I have sex with my husband, who luckily is still the same guy and not someone I don't know or don't like, so even if I am not myself there are no negative consequences of my behavior. I have a few shots of tequila or a little more bourbon than I should but then I stop because I don't want to get a headache. I buy a new shirt that makes me feel like I'm not a fat disgusting pig.

All I can say is, thank God I didn't go through this when I was 14. I would have done so many things that I would have regretted.

I know I can't lose my shit because there are little kids depending on me. On those days, that is what keeps me in line, even though I believe that they hate me anyway. The knowledge that I will come out of that fog doesn't help, because that knowledge doesn't exist, not at the time, anyway.

And then, today happens. Or, really--last night happens. I go to a friend's house for her birthday and talk to people and don't drink anything. I come home and have a drink with my husband and I want to have sex with him because I'm attracted to him, not out of some existential sense of despair. I go work out, and I feel strong and fit. I help my daughter with her homework and laugh behind her back when she's losing her mind because she's too hungry and she doesn't realize that's her problem.

And I can know something about myself--that the feelings I had earlier were real as far as feelings go, but they were not real as far as reality goes. I tell myself that I will just have to gear up for next month, when this happens again. I remind my husband that I will be insane for a full week if not more before my mammogram. I hope that he has the wherewithal to deal with me at that time and at the times when I am deep into a depression but he knows better than to tell me it's hormones, so he says things like, hey Kate, I think you will feel better in a few days. I tell my mom that I'm good for nothing and she tells me I know that's not true, though I don't know it at the time, but I hope she keeps telling me that when the time comes. I don't think I need therapy, I cannot take hormone supplements and I will not take anti-depressants, so on the normal days--and most of them are normal days, at least in that "new normal" sense--I remind myself that THIS IS NORMAL, and that other stuff is not even me, it's a sickness of a different kind. It's just another thing I need to deal with, and I can do it, with a little bit of help from people who care about me.

It's not that all the things that bothered me were fake--especially the fear of cancer recurrence part. I mean, I probably should get that chest scan. Realistically, I SHOULD worry about being short of breath. And I know a lot of people deal with depression, short bouts and long term conditions, and this thing I deal with is relatively mild. But I want to make it clear that it is not depression that makes me think about having mets, or dying of cancer, or not living to see my kids grow up. It is whatever happened in my cell biology that made those maybe realities into very distinct possibilities. What depression does is bring that reality right in front of my face so that rather than dealing with the living parts of life, all I see is the suffering and death. So let me be the first to say that that suffering and death might happen to me, regardless of my attitude or cyclical depression. It happens to women with breast cancer every day. It's just an extra issue to deal with, and a very serious one, when depression hits.

It's the perspective of life that depression changes, not the life itself.

People say things to me, and I hear their words, and I don't interpret them as roundabout ways of telling me I'm a piece of shit who is doomed to nothing but an early grave. My spinning instructor puts her hand between my shoulder blades and then touches my shoulder on the cancer side and tells me that I look so strong and that I have amazing range of motion compared to what I used to have (a post cancer compliment if ever I've heard one!); my husband tells me I'm such a beautiful sexy woman; someone in senior management tells me I did an excellent job with that meeting; my friends say they miss me; a stranger compliments my shoes; my son says "I love you."

The difference is that this time, the fog has lifted. The difference is that this time, when I hear these words, I believe them.

Monday, April 8, 2013

Day 1,020: Look Good, Feel Better?

Something happens when you find out you have breast cancer. You see into an aspect of society that has always existed--our collective obsession with women's bodies and the way women look--and your perspective on the whole thing flips. Suddenly, you are reading Glamour magazine and you realize that the entire concept of women's fashion magazines is inane though you have been reading them for more than 20 years. This really hits home when you see a full page ad for the Look Good Feel Better program that helps women with cancer get makeovers and the ad claims that the program has become one of the most important ways that women regain confidence in themselves post cancer, and you realize that is probably true. And you think this is absurd, and wonder out loud, really? I think research into preventing metastasis or having a real, cognizant hope of remission would give me a lot more confidence than the right shade of foundation.

Or maybe that was just me.

I'm glad that there are programs that help women get their mojo back after cancer treatment. Lord knows you feel like an alien at times. But I have always contended that we focus too much on women's looks. I've written a lot about hair, about how differently I was treated when I was bald, about sexuality and femininity and all of that good stuff. But I don't know that even I have stated the following outright: Breast cancer has been turned into a beauty contest.

Think about it. When you are sitting there planning your memorial service, 9 out of every 10 messages out there is saying to you: Now's your chance! Express yourself! Play around with hair color! Get bigger tits! Change up your style! Save the tatas! Bald is beautiful!

Jesus Christ. Who CARES?

Can you name one other type of cancer wherein it is assumed that the vast majority of people suffering through it will spend inordinate amounts of type on cosmetic surgery? Reconstructive testicle surgery, anyone? You know, to even things out or get a bigger and better one? It used to be that women who had breast cancer underwent mastectomies. Reconstruction was not an option; neither was lumpectomy, nor chemo for that matter. Having one breast or no breasts was the understood outcome of the disease and while I'm sure it bothered some people, that was just the way it was. We have progressed beyond that, and yet I will never get over how strange it seemed to me as I pondered my fate and my potential BRCA status and my prognosis when people would talk about "getting better ones" or "making sure things are symmetrical" or "filling out your clothes."

Really? Is that supposed to be top of mind? What about choosing a surgery based on the most effective way to remove my cancer? What about honesty regarding recurrence (extremely rare in the opposite breast if you are BRCA-; not zero, but not high). How about recovery time, how it will affect my exercise routine or my ability to pick up my kids? One of the best things I did in the early days, when I knew that I was facing a very real possibility of double mastectomy as everyone assumed I would be BRCA+, was visit a plastic surgeon. After viewing all of the before and after pictures and hearing him describe the potential risks and the length and recovery times for surgery, I quietly told Gabe that I was not planning to do reconstruction. He nodded, admitted he would miss my breasts, and said it didn't seem worth it. I didn't have to follow through on that decision since I was able to have a lumpectomy, but I know I wouldn't have changed my mind.

I am not condemning women who get reconstruction, obviously. We all--and yes, it's a band of we, regardless of our differences in surgery or hormone receptor status--receive enough criticism about just about every aspect of our lives post cancer. I do wonder, however, if anyone ever questions the system that puts reconstruction out there as the de facto solution. I feel so badly for women who have complications from recon, and there are so MANY of them; I feel for them as they spend time every week getting their tissue expanders filled, I feel for them as they are experiencing pain and discomfort that went beyond their cancer itself. I understand why they do it. I just wish the rest of society wasn't so quick to assume the importance of it.

Let me give a corollary. I knew from day one that I was going to lose my identity-forming hair from chemo. I spent a lot of money on wigs as I predicted how it would effect me to be bald. And then...I was bald. And the wigs felt alien, and I didn't look like myself to myself. So I tried out the whole bald thing, and it wasn't as bad as I expected; I got used to it. And yes, I understand that the one loss (hair) is temporary, while the other loss (breasts) is permanent. I know that it is hard to find clothes to fit if you have no chest, I know that not having breasts is a loss and an amputation. But the point is that women often have no such ability to ease into the reconstruction decision. You often get the tissue expander put in during the mastectomy or at least start the process of recon at the time of cancer surgery. I wonder how many women would just get used to their breast-less selves if given more time to walk around in the world that way.

The answer, I think, is relatively few. And it's not because there's a right or wrong answer to the reconstruction question. It's because women with breast cancer are women who live in the world. And our world places a hell of a lot of emphasis on how women look.

The sad outcome is that we have turned breast cancer into another way that women can prove that THEY REALLY ARE BEAUTIFUL! REALLY!

And I wonder what the hell beauty has to do with this disease, or why I should be expected to care whether or not other people think I am beautiful. I wonder why so many people told me I was beautiful when I was bald, that I had a pretty face and a nicely shaped head and that "it's just hair." I wonder why so many people seemed surprised that my skin didn't turn weird colors, that I still laughed, that my husband was "still" attracted to me. No one says these things to me now that I look "normal," now that I'm no longer "sick." Those compliments were my consolation prize for having to stand so close to that good night. Because the assumption was that if I couldn't live a long life, I could at least live an attractive one, and I should be glad for that.

The problem was that I didn't feel that way. Now, I am not trying to sound ungrateful for the compliments I received. Receiving those compliments was better than not receiving them. I just want to put it out there that every time I said "thank you," I was hiding the fact that I really wanted to say "I don't care." I don't care if people pity me in the grocery store or think my head is too shiny and I don't care if one breast is a really different size than the other. I just want to make it. I just want my body to work again. It's no picnic to be treated like a freak out there in the world, so it's nice to have the opportunity to blend in, but you know what?

The fact that people treat others that way shouldn't be a cancer patient's problem. It is too much to ask women who have so much else to deal with to deny that they too live in the world, and the world they live in has very superficial standards for what makes women important. Women with breast cancer are potentially stripped of so many things that are RELEVANT--such as their feelings of youth, vitality, fertility, health, functioning sexuality, and invulnerability, that it is too much to ask that we also serve as battlegrounds for the irrelevant issue of arbitrary definitions of physical attractiveness. So, we usually accommodate the masses, because it is easier to do that than walk around with a big C mark on your forehead. But isn't the C the important part? Isn't this about the cancer, not the tatas? My life, not my hair? My prognosis, not my face?

Breast cancer is not a contest wherein you get to prove that some basic, stripped down version of yourself is still pretty, because who gives a fuck if you're pretty? There's nothing pretty about my reduced life expectancy, even if I make it out of this mess without ever getting mets. Oh to be a man, and have people ask you how you feel, rather than say some weird stuff to you about "inner beauty" and being "radiant."

Looking good never--NEVER--made me feel better. Was it preferable to looking like shit? Well, I guess. But looking like shit and feeling normal would have been much preferable to looking good and feeling like shit, which is how I apparently walked through cancer treatment. I walked around with my perky self and my skinny body (every time I see 119 on the scale and feel "fat" I remind myself how horrible 110 felt and I slap myself and go get seconds) and my bald head looking like some kind of warrior princess badass, or so I was led to believe, and feeling like a colossal pile of shit had just landed on me and wondering how I could dig myself out of it. I never wondered what eyeliner could make it look like I had eyelashes--I wondered how the hell anyone ever survived without eyelashes when not having them brings excruciating pain and dryness and discomfort to your life. Waterproof eye makeup might be nice, but it would be even BETTER to actually have your tear duct system work properly. And when people would compliment me on being thin, I could do nothing but shake my head. What a diet plan! The one where you can't eat anything at all or even be around food without puking and your hand shakes when you're feeding your baby food from a jar because you're so damn weak from the enforced skinniness!

Feel good, feel better. Or, more accurately, get used to the new ways that you can define feeling "good," since that is now relative, and move on with your day.

I was given all kinds of advice about dealing with baldness and many referrals to wig shops. And yet the most important advice I was given about femininity and sexuality and feeling desirable came from a sex-specialist MD who told me what kind of lube to use as I was going through chemo-induced menopause. Hair is superficial. Sexuality is innate; it affects your sense of yourself, your overall feelings of happiness. Feeling "beautiful anyway" wasn't helping me any if I felt like my body was turning on me.

Having someone tell me to draw eyebrows on my face would not make me feel better about being admitted to the hospital with a temporary heart condition or being unable to complete a chemo treatment due to low white blood cell counts. Wearing killer shoes never made me believe this beast couldn't kill me. If a teenage boy would laugh at me for being bald, I didn't care, because I would just think to myself, I wonder if I will live long enough to see my son become a teenage jackass? I cared if Gabe found me attractive, because that's important in a committed relationship, but I never really thought he wouldn't be attracted to me. I couldn't imagine that I had married a guy without his priorities in good working order.

When I had my head shaved (the first time, in the salon), I thought I looked like a boy. Gabe told me I was wrong, and that I looked beautiful. I have recounted that detail numerous times. Here is what I haven't articulated until now:

I didn't care.

I thought I looked like a boy, and I shrugged, and I stopped crying, and I realized that I was just going to have to walk around looking like that boy, goddamn it, because the alternative was much less appealing. I had been so, so sad about losing my hair, and that sadness was real. But then it was gone, and I looked in the mirror. I saw a young woman who was not yet 35. She had no makeup on, she was at her nadir chemo weight, and she hadn't slept more than 2 hours in 5 nights (TOTAL). She had small children, including a 1 year old who was just learning how to walk. She had a young husband, a lot of friends, living parents, an older sibling. She had a career where she needed to put herself in front of a lot of people and speak about obscure things. And she looked like a boy.

A boy who wanting nothing more than the privilege of growing old, someone who, in one of her/his most introspective moments, said this:

Who cares if people see me as cancer first and Katy second? How would I ever know that’s what they’re thinking, and why would it matter if I did? It wouldn’t change the fact that I need to do this cancer bullshit. It’s just not my problem. My problem, or one of them, is having cancer, and having to do chemo. I might get a whole gamut of reactions, mostly to my obvious cancer-sign of baldness, but that doesn’t change the situation. And it wouldn’t change if people didn’t know either. My struggle would be the same, even if people couldn’t see it.

What I couldn't see then, is that my defining struggle was in remaining MYSELF, regardless of what people thought--good or bad--about my body or my face. And that breadstick detail in that blog post referenced above (you have to read it--that detail alone makes it worth it)--that was all me. When others tell me I was brave back then or tell me that I look great these days, I might nod and say thank you. But inside, I am picturing this: a very sick, tired bald lady laughing her cancer ass off at her daughter after doing the correct, nurturing thing.

I see myself looking out into the world and finding something interesting to ponder, rather than looking at myself and finding something insufficient to criticize.

Monday, April 1, 2013

Day 1,012: Cancer Dreams

So, Katy, isn't it an amazing feeling to have beaten cancer?

There's no such thing as a bad day once you've had cancer! I'll bet nothing bothers you anymore!

Cancer picked the wrong girl when it picked you!

I hear this kind of stuff all the time, and I understand the general sentiment behind these statements. I usually just smile. It's hard to say, well, there's no such thing as "beating" breast cancer at not quite three years in, because I am still in the camp of folks with a very high chance of recurrence. The whole Stage 1, not in the lymph nodes thing is fairly irrelevant for triple negative breast cancer, which is known to just bypass the lymph system entirely and metastasize anyway. I never feel like I can say that life continues to contain disappointments, both large and small, because no one wants to hear that from a cancer survivor. And I don't think cell biology has much to do with personality or moxie, but I usually keep those thoughts to myself.

It's a strange thing to have had something like TNBC, or probably any form of breast cancer, I suppose. There are some cancers that kill people very quickly, others that are considered curable if they respond to treatment. This is just something that lingers, responds initially, might come back, could always take you by surprise. When people ask me "How ARE you?" or "How is your health?" I still don't know what to say. I mean, look, I'm fine. I'm really healthy. In fact, it's possible that I am healthier than you and everyone else in the room.

But that doesn't mean I don't have cancer--like, RIGHT NOW.

I'm not paranoid, just realistic. The best piece of advice I ever received from another woman with breast cancer has stuck with me for almost three years. Ironically, this advice was passed on to her by our mutual oncologist, who never said anything so enlightening to me:

"You have to live like it's not going to come back."

What a simple statement!

Do you know how hard it is to do that every day? I'm going to tell you something: you don't. You can sympathize, but it's probably quite a stretch for you to empathize.

I have some experience with this. Epilepsy is kind of comparable and kind of not--let me explain. I was diagnosed with a relatively "mild" form of epilepsy at age 6 (I had at least 100 seizures a day, but they were petit mal or absence seizures, much less likely to cause brain damage). I took toxic medication that had long-term side effects and I went through a lot of weird medical procedures. I was "cured" in an extraordinarily painful manner at age 8, only to have epilepsy very publicly return at age 11. I was weaned off of medication at age 17. The side effects remain, the state of Illinois still won't let me easily get a driver's license, and I worry about it, in the back of my mind, on various occasions. I worried about it with each pregnancy and when I went on birth control pills. It is a lingering thought in my mind when I am swimming or driving and I hope I don't die or kill someone else by having a seizure. If my kids stare off into space, I wonder "what have I done?" since no one really understands the genetic links of neurological conditions like epilepsy, and then I tell them to eat their vegetables.

But epilepsy isn't CANCER, you say. Well, epilepsy kills more people in the U.S. each year than does breast cancer. It's no joke.

So I was somewhat more prepared than the average breast cancer patient for what this new normal would be like, but it's still something else. I see my oncologist every six months at this point and have my annual mammogram coming up in a month. I am already nervous about that. And no, you don't know exactly what I mean when I say NERVOUS. You say "I can imagine" and that's it--your concept of that kind of nervousness exists solely in your imagination, and I know this, because I was you not so long ago. I don't have any other regular medical procedures: I don't get scans, blood draws, or have tumor markers checked. That has never been the standard of care in my doctor's practice, and recent recommendations agree with that protocol. I am not on tamoxifen or any other maintenance medication. I went through all of that shit in 2010, and then they said: "OK, good luck. We've done what we could do," or something to that effect, and I was sent home to live my life like nothing had ever happened.

And most of the time, I go to work and deal with my family and try to see my friends and shop online and eat too many carbs like everyone else. I work out a lot, but hell, I would probably do that anyway. I have a healthy lifestyle but I am not overly obsessed. I eat some jelly beans if I feel like it or have a nightcap and I don't feel guilty. I don't have panic attacks. The point is that I try to live like it's not going to come back.

But then sometimes, if you're paying attention, you might notice something. I might rub my chest right in front of you, when we're out in public. I might start pounding on my breastbone like a gorilla, only absently, while I'm talking to you about something else. I might inappropriately yank my shirt down and stare at the top of my breasts. I might do these things even if you are a man, or my coworker, or the barista. I am not thinking about you at all when these things happen, but if you are paying attention, you might notice.

I do this sometimes because I still have chronic pain in my pec muscle, or what I assume to be my pec muscle, because in general it hurts when I press down on my left breast/pec/breastbone. It gets worse with some kinds of exercise but is pretty much always there. I know it is probably a radiation injury, but I also know that it could--VERY REALISTICALLY--be mets to the sternum or chest wall. I know that the slightly raised colorless spot in my cleavage is probably one of those innocuous "dermal calcifications" that almost all women have, but I also know that it could be cancer presenting in my skin. And, I know that metastatic breast cancer is incurable, and that there are very few treatments for metastatic TNBC in particular.

Most of the time, I do those things, and then go back to my other business as if nothing had happened. Sometimes, these fears and concerns follow me, as they did last night. I had a dream, a very realistic cancer dream. I thought I should get my chest issue checked out. Somehow, I was able to give some kind of "sample" to Gabe (which of course makes no sense) and I made him take it to the hospital. He got the results, which was that cancer had spread throughout my left breast and chest area, and he cried inconsolably when he gave me the news. And in my dream, I felt vaguely nauseous, kind of like I couldn't breathe, but I just nodded and said "OK," and then I woke up.

Which is exactly, and I mean EXACTLY, the reaction I had to my original diagnosis, except that I didn't wake up, because it wasn't a bad dream--it was real.

Perhaps I had this dream because I'm NERVOUS (it's not like public speaking, folks) about that upcoming mammogram. Or, this is just something I will deal with for a while when physical issues like these arise. But there it is, all the time, just there in the background, like the memory you have of me when I had long hair or that time I made you laugh so hard you choked on your dinner. Though it would make you sad to learn of my cancer spreading, it would be me with a life cut short. I am in awe of all the people I know who live with that knowledge of their lives every day, who do not live in FEAR of it but in the TRUTH of it.

Dreams are telling things. I am not one of those people who has crazy dreams. I have been known to dream about what I will have for breakfast, and then wake up and...make that very thing for breakfast. It is as if my subcounsious mind decided at some point to come to terms with my conscious mind. But even these dreams that are so real tell us something. I wish I could rely on someone else to literally carry this burden to the lab, but I can't. I am the one who has to pay attention to my body, and make decisions about what issues need follow-up care, and I have to physically do the tests and wait in the doctor's office and pick up the phone. It's me who has the dream, wakes up with a start to find myself alone in bed because Gabe had gone to take care of Augie who had woken up in the middle of the night, feel my chest again, and go back to sleep. It's me who will wake up at dawn to exercise just like I always do, and then I will help get the kids breakfast and get ready for school and I will go to work. It's me, and others like me, who must live like it will never come back, knowing all the while that it might. So next time you're wondering what to say to one of us, ignore the conventional wisdom and say something like this:

Your seeming normalcy is nothing short of amazing!

I know no one will ever say this to me or to any other cancer survivor. But a girl can dream, can't she?