Day 656: Breast Cancer Takes on Foot in Mouth Disease

A few cancer survivors I know recently posted a great blog by a woman who nailed many of the ridiculous things that people say to women with breast cancer. It’s one of those “it’s funny because it’s true!” situations. She gave the answers and responses that we would all like to give voice to but never do because we are too polite. And that made me think about the theme that I started with the last blog:

Why are we sorry that we have cancer? Why do we spend so much time and energy trying to protect other people from our daily reality?

I will admit that one of the things I am proudest of about myself is that I’m not a “nice” girl. I never worried about being polite to boys, never cared if people thought I was overreacting in a situation I didn’t feel comfortable in, didn’t have a problem fighting back or acting like a crazy person if I needed to do that. I’ve always been pretty good at standing up for myself and telling people when they’re being shitty. And yet, I don’t like to seek out confrontation, and I’ve often used my relatively thick skin to just let things slide off me, figuring it wasn’t worth it to start something or get involved in unnecessary drama. If someone says or does something insensitive to me that is not actually dangerous or grossly disrespectful, I usually just shrug and bitch about it later. I don’t hold grudges most of the time. I tell Gabe right away when he pisses me off—I never do that “you should know why I hate you right now!” crap. You get the picture.

I also learned at a young age that sometimes people say things that are just short of stupid because people really have no clue what to say, and you can’t blame them for that. In fact, sometimes it’s a blessing. Back when I was in a wheelchair, when little kids asked me what was wrong with my legs, or why I couldn’t walk, I actually appreciated the honesty. It was a hell of a lot better than adults asking my parents (right in front of me, as if I wasn’t there): What’s wrong with her?

Um, not much. What’s wrong with you?

Right?

When a cashier would ask, has anyone ever told you what beautiful hair you have? Or a man would ask, has anyone ever told you that you have amazing legs? I would always think, well of course. I wasn’t born yesterday and if you are noticing it someone else has noticed it before you. But no one says something so incomparably bitchy. My mom taught me that just because you’ve heard it a thousand times, it’s the first time that person has said that to you, so keep that in mind, say thank you, and just keep walking.

So it should be when people make the obligatory cancer gaffes. And yet there’s something more going on, something deeper, when we as survivors let those comments go. There’s this guilt, especially if you’re a young cancer survivor. I felt this guilt the first few times I went to the cancer center for my pre-surgery appointments and my initial visits with the oncologist. I still had hair, and I looked so healthy, and my handsome husband was with me, and all the older women wearing wigs looked at me with such sadness. I wanted to say, I know, I’m sorry, I shouldn’t be here, it’s depressing, even to you. I felt guilty around the doctors who seemed sad that I was there. I felt that guilt when my friends didn’t know how to behave around me, when people would find out about my cancer for the first time and be floored.

Don’t get me wrong—I got over it and just did what I needed to do, baldness and skinniness and no eyebrows and all. And I never have used my “I don’t have cancer of the face” retort when someone has told me I look great. I’ve always felt like I’ve protected other people’s feelings from my own innate trigger reactions and said the socially appropriate thing. And yet, I have been in the same shoes as every other cancer survivor I’ve met—especially those who choose not to hide it in various ways. You end up having to make other people feel better about your situation, comforting them when you would think they would comfort you. It’s weird. I don’t think there’s a real solution to this problem, outside of everyone having something extreme and physically challenging happen to them as a child so they have some sense of empathy and lose their sense of immortality and indestructablity, but I do have a few thoughts of my own to add to the shit people say to people with cancer lexicon. Maybe this will help you understand what I’m hearing, what other folks with cancer are hearing, when you say certain things. I’m not trying to be a bitch here.

Oh what the hell, yes I am. I don’t care if you think I’m a bitch. I write this blog so I don’t have to say this shit to people for real.

I have heard all the following things in the past not quite two years—no joke. Often these things were said by well-meaning people I actually like, so I know it was just a matter of shock and sadness that led to the gaffe, and I understood and didn’t take it personally. On the inside, I was making the same face you see here on surprised, 16 year old Katy: Holy shit no you didn't! Other times, people making these statements made me kind of hate humanity as a whole. AT those moments, I wish I could just do like Miss Piggy, and kick everyone's ass with my gogo boots.

So just know that when you say this, I think this:

“Oh my god my aunt died from breast cancer and it was terrible.” “Wow, I’m sorry, especially since she is rolling in her grave right now wondering what the hell happened to you to make you say something like that.”

“I just don’t know what to say.” “Well you should probably figure it out, since one in every seven or eight women you know will have breast cancer at some point. Include yourself in the seven or eight.”

“Does that run in your family?” “No, unfortunately I am doing nothing to improve the gene pool by potentially dying from cancer.”

“Did you have any risk factors?” “I know you are asking me if I’m a fat drunk coach potato, and honestly right now it seems like I might as well have been one for all the good the good living did me. Or do you mean risk factors like being female, having breasts, and going through puberty early?”

“Oh shit will you lose your hair?!” “Oh shit I guess so! I never thought of that!”

“Is it the bad kind?” “Nope, it’s the happy pink fuzzy love kind of cancer.”

“I’ve always worried that I will get breast cancer.” “Not me. I’m really kind of worried now that I ACTUALLY HAVE IT.”

“At least you’re already married.” “Yes, indeed. And thank God I never even considered marrying you.”

“My friend had a scare once.” “Wow really? Hey I know some people who had tangential relationships to bad things that I’ve heard have happened to other people’s cousins.”

“I thought you’d been looking a little skinny and tired lately!” “Um, early stage breast cancer does not make you lose weight or feel sick or fatigued. Those things only start to happen when conversations like this lead to chronic nausea and insomnia.”

“You could get brand new bigger better boobs for free!” “You moron, reconstructed breasts have no nipples, did you know that? Also, in my opinion there is no way to improve on the breasts that I already have, except to remove the damn cancer growing in there. They are awesome and I am so glad that I never let you touch them.”

“You know what you should do?” “Yep: panic. It is definitely time for panicking.”

“Wow, and you’re such a beautiful young girl.” “Not for long!”

“I’m sure it won’t be that bad.” “Actually, I’m thinking it will be a colossal pile of bullshit that will go on for years, and that’s only if I’m lucky.”

"Only black women get triple negative breast cancer." "Well shit. All this time I've been living a lie."

“Can you still have kids?” “Due to the type of cancer that I have, yes, but only by putting myself in grave peril and potentially increasing the chances that the kids I have will grow up motherless. Thanks for reminding me.”

“You are a fighter, so you’ll beat this.” “This is not a boxing match or a game of chess. You can’t just shimmy away from it or outsmart cancer. Cancer doesn’t care about the content of your character. If it did, I can think of a lot of people who would have cancer besides me.”

“What’s your prognosis?” “I’m going to die. Eventually. In the meantime I’m doomed to answer inane and borderline offensive questions in parking lots.”

“They have classes that teach you how to put makeup on when your skin starts to look really weird and you lose your eyebrows and everything.” “They also have etiquette classes for people with no social graces where they teach you how to get a clue.”

“I didn’t think you could get breast cancer if you were breastfeeding.” “WHAT?! Why didn’t they tell me that?! I demand a DO-OVER!”

“I knew you’d make it!” “Really? Haven’t made it yet. In many years, if I’m still around, I guess I made it. Then I get to revel in the fact that because I had breast cancer before age 40, my chances of getting a second type of cancer go up by 300%.”

“Of all the kinds of cancer to get, I heard breast cancer was the best one.” “Totally, dude. You get to join this really cool club of women everyone thinks they understand and no one actually knows shit about.”

Oh, I could go on, but I shouldn’t, lest I alienate everyone who actually reads this blog. There are a lot of things that people have said to me that have absolutely gotten it right, and don’t think I’ve forgotten: I’m so sorry to hear that. Can I do something? Do you need help with the kids? How’s Gabe holding up? We’ll figure out a way to be flexible so you can keep working. My mom is a 20 year breast cancer survivor. Oh wow, what a bunch of shit. That’s unfair. Keep your chin up Katy. I’m here for you. Just do what you need to do and don’t pay attention to what anyone else says.

Then there are the people who just keep talking to you anyway, about other things, like you’re a normal person. There are the people who just show up at your door and hang out with you. If you don’t know what to say, just do that. The little bitch inside every cancer survivor I know will remember you for it, and if the horrible happens and the tables are ever turned, she’ll be the first to come to your house and overlook everything else and just talk to you. I promise.

Day 647: I'm Sorry, So Sorry, Please Accept My Apology

"I'm sorry."

Simple words, right? Complicated message. I've been thinking about these words ever since I had a conversation with a woman at the gym at work the other day. She is quite obviously pregnant, and we started chatting in the locker room about how classes have been crowded lately, what with everyone's ill-fated new year's resolutions. I asked her if she was going to keep it up as long as she could, and she said, "Well you did! I was really impressed by that!" We laughed about the memory of me waddling into the gym 8 months pregnant. I asked when she was due; she was given the date of May 29. Hey, that's my son's birthday! I said. We started talking about hospitals and doctors and she asked me who I went to at Northwestern, adding "there are so many doctors, I know it's not really worth asking." It turns out we have the same ob/gyn. She seemed really tickled about this; he is, after all, a strange one, and many women don't like his style. I talked about all the reasons I thought he was a great doctor, going through the things that happened during my pregnancies, him delivering Lenny, and how I thought he always paid attention to me, took me seriously, answered my questions, and genuinely cared about me. The swearing, the punching of Gabe's arm during every visit, the anger when delivery was slow, all of that worked for me. She seemed to really appreciate the insight. So I added, and, on top of that, he was the one who gave the ultrasound order for my breast cancer, so I'll always be grateful to him for that.

Her hand shot up to her face. "Oh my God, I'm so sorry." She reached out and touched my arm. I couldn't believe it. "Oh shit, I'm sorry," I said. "I walked around bald here for so long, I thought everyone knew." She touched me again, told me she was sorry again, and then said she was glad that everything seemed to be fine for now. We both successfully steered the conversation back to the original subject, far away from cancer.

But the whole exchange just stayed with me. This woman, someone I don't know well but like anyway, as she has always been friendly to me in and out of the gym, remembered me pregnant, weighing sixty pounds more than I do now, barely looking like myself, three years ago. And yet when I looked exactly as I do now--same weight, same figure, sans hair--she honestly had no idea that I was the same person. That cancer girl, that can't be the same woman who powered through all those squats and lunges when she was as big as a house, right? She can't be the same small woman I see three or four days a week in this locker room. That must be someone else.

This happens to me at work all the time. People just don't make the connection, even though I never hid my illness at work. I never wore wigs, never painted my face to hide the lack of eyebrows. It's as if my overall humor and health defy any other reality. It makes me think back to a year ago, when at this time I had written two very deep and somewhat painful blogs--one about being hit on at a bar only to have the guy tell me he knew I had cancer, and the other about my overall feelings of ennui and depression. What was hard then was being "almost normal," being deep inside the "absurdity" of the way that people experience an illness like cancer. What is hard now is acknowledging to other people that yes, cancer did happen to me, might still be happening to me in fact...who knows?

The point is, I'm sorry. I'm sorry that you didn't know, and we were having a nice conversation between two women, one woman who could impart some wisdom onto another who had never done this thing called motherhood before, and I ruined it, by bringing cancer in--I honestly, truly am sorry. I shouldn't be; there is nothing to be ashamed of, and cancer is indeed just now a fact of my life like any other, but I still carry that guilt. I have carried it now for closing in on two years. I'm sorry mom, I'm sorry Gabe, Jesus Christ I'm sorry for the things you know that you shouldn't, Lenny, Augie I'm so sorry you can never breastfeed again, friends I'm sorry you have to see me like this, boss I'm sorry I don't know what I will and won't be able to do. I'm sorry, me, or whoever I used to be, that the shit had to hit the fan yet again, that the normal decisions and petty distractions had to be put on hold for a while.

Regardless of whether it's right, or logical, those feelings of apology, those feelings of "sorrow" from which the word sorry actually comes, are absolutely true, absolutely heartfelt. So often people say I'm sorry to get out of something, because it is expected, because they want to exit the tough conversation. Saying I'm sorry actually has gotten a bad rap. But sometimes it's actually true. People say I'm sorry you have cancer, and that is so much better than the other ridiculous things people say (oh my God my grandma died from that; what, is it the bad kind?; I'm sure you'll be fine; you're tough, you'll beat it; I once had a lump too and it turned out to be nothing; does that run in your family?) because it is really the only appropriate thing to say that isn't a lie. And the experience I related above, that young pregnant woman's "I'm sorry" was so good--so real, the way she touched me (people are so often repelled by someone with cancer, as if it's catching, as if to touch a cancer survivor is to touch death itself), the way she looked surprised, the way she realized, wait, I'm a grownup, I need to do this right, say something positive, not give any pity, not pretend that I can't talk to her about pregnancy anymore.

I didn't want to hug her for what she said, but for acting so human about it, and treating me likewise.

I have apologized so many times for having cancer, and yet it will never feel like enough, not to me. Don't get me wrong--I don't believe I brought it on myself, I don't believe it's my fault, and I don't think there's anything I would have done differently if I had known what was coming. But it's still bullshit, and I'm still sorry it happened to me and in turn to the people who care about me. That sorrow is there, and it probably always will be, however long that always turns out to be.

When Gabe was reading the last blog while we were feeding the kids dinner, he suddenly got choked up. He put the iPad down and ran out of the room. The kids acted like nothing was happening and I continued to uselessly badger them about eating. Later I asked him what got him, was it the part about our strange, somewhat botched engagement story? Nope, he hadn't gotten that far--he stopped at the point when I talked about my appointment with the oncologist. What's upsetting about that? He got choked up again: "Twenty months in, you said Kate, 20 months. It just seems like there's so much farther to go."

I'm not the crier in the family, so I just sighed. Yes, there is, but I can't look at it that way, can I? I have to look at it as if I am close to two years with no evidence of disease. We have to live like this now, for a while, counting days and months and checking them off--now, we just wait.

And Jesus babe, I'm sorry.

I'm sorry that sometimes you have to run up to the attic to cry. I'm sorry that I don't cry about this anymore. I'm sorry that I look like the pinnacle of health, and yet there might be something lurking, defying me, waiting to destroy our lives again. I'm sorry in the way that sorry means "regrettable, deplorable, unfortunate, tragic," in the way that Webster tells us it means "sorrowful, grieved, or sad," even in the way that it means "useless." It isn't much, but it's the truth. .

So there's that..

In addition to the concept of apology, I've been thinking about that too--about waiting. It is in some ways the hardest part, and yet...it really isn't. When people say that waiting for bad news is worse than receiving it, they are only telling half truths. Waiting is agonizing--it's hard not knowing your stage, your prognosis, whether your daughter has a high probability of contracting cancer, and all of that. And yet having cancer is REALLY hard, and some people do it, live with it, every day for the rest of their lives. I won't lie: Every day without having to do cancer treatment is a day I have back, every week that passes with no chemo, every month when I don't need surgery, every year older that I turn, is worth it even if I don't get to have this reality forever. So it's there, potentially waiting, but it's not there, in my face.

It's hard to explain what I'm trying to say. Let me try this: I'm writing today from the north woods of Wisconsin, our serene and austere getaway place that I still can't believe we have access to, considering how far removed Gabe and I are from being "lake house" people. It's not OUR lake house, of course; and yet here we are. The last time I was here was almost six months ago. I wrote a poem about overcoming my fear of heights, and that experience overshadowed something else that happened that I never wrote about. It was summer, and I took at least two walks by myself every day in the solitude and the trees. As I was coming back home one day from one of those walks, I looked straight ahead and my heart caught in my throat. There right in front of me, maybe a hundred yards away, stood an adult black bear. She was looking right at me, frozen. I had no idea what I was supposed to do--I grew up in Chicago, after all, and my street smarts have helped me escape from men bigger than me, but leave me at a loss in the wild. So I stood there, breathing hard, not daring to move. Time really does stand still when you're scared out of your mind. Then she moved into the woods, and I waited a while longer to make sure no bears would follow her. After about five minutes, I started walking again; it was no use to go in the other direction, since there was no one to help me, no one to call out to, no one to ask for advice. I got home, said you will not believe this! breathed a huge sigh of relief, and started to tell Gabe the story.

So it is with cancer. You wait, stand still, your heart caught in your throat, you assess whether the beast will walk away or walk towards you, and either way it works out in the end, you just keep walking, find someone who loves you and tell the story. But waiting is still better than being mauled by the bear. You know what I'm saying?

Me neither, honestly. In an attempt for explanation, in order to try to define what it means to wait, and whether or not there are things worth waiting for, I decided to write a poem for my kids. I admit I have only ever done this once before, when Lenny was two and I wrote her a poem called Why Popsicles. It is simple enough that she could understand it even then. So here is a way to think about waiting, to think about poetry not as literature but as a way to explain something to my kids. I hope they can see what I see here--I hope.

Frozen Lakes, Explained

For Lenny and Augie

We are going to walk out onto the lake.
We will not be the first ones.
There are people in that box, because that box is actually a house.
The people are not really small; they are just on the other side.
It is all a matter of perspective.
The house and the trucks weigh much more than you.
You will not fall in, even if you do fall over.
That’s right, I am making you a promise.
The snow is clean, so you can eat it.
The trees are beautiful, so you can try to run to them.
There are deer tracks; birds have walked here.
No, I don’t know why. I don’t know where they were going.
Do you understand what expansion means?
That is what is protecting you; the cold has made this playground.

This is something I had to wait more than thirty years to do.
This: the ice, the trees, the quiet, those men looking across at us,
the reminder of animals, the looks on your faces,
the way you let go and took off running,
the sound of your voices in the cold when you asked to come inside
the curiosity that led you to ask for an explanation,
the fact that I didn’t want to tell you,
having waited for this, this moment when you no longer believed me
when I told you that some impossible things are actually possible.
You can run now where you might otherwise drown.
Trust me, trust all those who went before you:
those who knew that it would work, and those who didn’t,
but walked across the water anyway. Especially them.

Day 642: Making Decisions in Cancer-Land: What Would Steve Jobs Do?

It’s going to be impossible for me to follow the last post that I wrote, the one about Komen and Planned Parenthood, so I’m not even going to try. (Instead, I’m going to gratuitously put another famous name in this week’s title to see what happens). That blog kind of blew up on me—it’s the third most-read post I’ve ever written, after the GI Jane one (when I had my head shaved during chemo) and the aptly titled Lumpectomy Blog. And it was written just five days ago—folks have had a year and a half to find the other two. I guess this is what happens when breast cancer gets in the news for all the wrong reasons, and small angry ladies who happen to be breast cancer survivors then decide to sit down at the computer and let loose. Incidentally, other not so positive things can also happen when folks start paying attention to you—my Shit Moms With Cancer Say blog was deleted by Google soon after the first few hundred people read the Komen post. Was it deleted for swearing? Copyright infringement? Who knows. But I’m wondering who the hell is spending time deleting my cancer blog, what with all the child porn and bomb-making instructions and such that one can find on the Internet. Oh well.

My mind is still racing about the Komen fiasco. There’s a part of me that’s glad that behemoth breast cancer organizations are now being looked at with some scrutiny, as folks start to question where all the money is really going. At the same time, I am actually more interested in the research-based work that groups like Komen fund than the breast-cancer related services that Planned Parenthood is able to provide women, even if it makes me a straight up cancer bitch to admit it. Most PP offices aren’t equipped to give mammograms, let alone ultrasounds or biopsies. What they provide are manual breast exams; they provide the hands that feel us, if you will. This can be very important for women who don’t have access to regular doctors—though at the end of the day, most women find their cancerous lumps themselves. The question remains: for lower-income women, or those without health insurance, what’s next? PP finds a lump and recommends follow-up care somewhere else…and then what do you do?

I guess what I’m saying is that we have bigger problems with access to critical care for women in this country than Komen or PP represents. I’m glad that Komen was taken to task. But I also wonder, ok, who is going to pick up the slack if donations fall? Some of us out here live in the breast cancer periphery; we’re the uncool kids who don’t have estrogen-positive cancer that can be treated with tamoxifen or halted by staying skinny or exercising a lot. Who’s going to fund real, experimental research on triple negative breast cancer if even flawed groups like Komen don’t do it?

Who’s going to stop making us choose between organizations that are trying to help us? I think it’s great that people started pouring funds into smaller breast cancer organizations, into Planned Parenthood itself, and into other charities because they were pissed at Komen. But I also know that most of those smaller organizations cannot—simply cannot—do much to try to find a cure for breast cancer. We need screenings, support groups and fitness clubs. But we also need to figure out why so many women get breast cancer, why breast cancer behaves and presents in such fundamentally different ways in women under 40 (and is especially different for those under 35), how to protect against contracting it in the first place (don’t tell me it’s always all about being fit—my size 2, 117 pound, lactating self with three aggressive tumors would beg to differ), and how to develop alternative treatments or chemotherapies that don’t cause devastating side effects. Komen might not be the best way to do that; I don’t know. We need real research dollars to go beyond those things that are directly in the interests of pharmaceutical companies that can reap big profits from the results, no matter who funds that research. I’m just saying.

There’s another thing that’s tugging at the back of my mind related to the whole Komen debacle. Those fighting Komen made the argument that this isn’t about abortion, and shouldn’t be about abortion. As you know from the last blog, I completely agree. And yet, those of us who are young women with breast cancer know something you don’t know. In some ways, it IS about abortion. In some far-off, worst-case scenario ways, it is. Because we are not supposed to have children; we are not supposed to get pregnant. If we already have children, we are told—right away, as if it’s nothing, as if this is no great loss to bear—that we are done. We can’t go on the pill or any other hormone-charged contraceptive due to the nature of our cancer, so our options are relatively limited. Of course, since chemo will kill our ovaries and throw us into menopause, most doctors don’t bother to talk to us about birth control at all; if they tell us anything, it’s that we might want to freeze some eggs. If we actually bother to do some research and find out what that entails—the shots, the hormones, the surgery, the exorbitant expense—it doesn’t seem like such a good deal most of the time, especially since no one wants us to use those eggs for at least five years. If you are a smart-ass annoying cancer patient like me, you ask a lot of questions about this. Why? What’s magical about five years? Is that how long it takes for chemo to get out of your system? Is that how long it takes for our hormones to correct themselves? Is that the number you give because most women with breast cancer will go on Tamoxifen for five years and be in medically-induced menopause (though that’s not relevant for me)?

If you are in a small minority of “lucky” patients, and you get an honest fertility specialist to talk to you, she will tell you this: “None of those are the reasons we don’t think you should have children. Pregnancy and lactation do all kinds of things to your hormones, and this can cause recurrence. Because you are already most likely to have a recurrence in the first five years, we advise you not to get pregnant. The question is, Katy, if things don’t go well, would you want to leave behind two children or three? I know that’s a hard thing to hear, but that is what you need to decide. If you do get pregnant, we would counsel you and recommend that though you have other options, you should probably terminate the pregnancy.”

You read that right. That statement was not made by a left-wing politician, a women’s clinic, or some off the wall feminist organization. That statement was made by a fertility specialist that I met with during my treatment. I would surmise that she, and others like her, had seen enough shit hit the fan that she had good reason to say what she said, no matter how horrible it was for me to hear her say it. Many young women with breast cancer, including those with adorable children they love more than life, including those who are in passionate loving marriages, including those with stable jobs that remain stable even throughout their experience with cancer, are told that if life throws another curveball and an unintended pregnancy occurs, we might want to…have an abortion, for a variety of reasons—in order to protect against cancer recurrence, save our own lives, or protect our husbands from the burden of single parenthood.

So in some unfortunate aspects, it is about abortion, though not in the way that most people think. Now, I am absolutely pro-choice, but I would rather eat glass than face that decision myself. I actually don’t think I could do it; I am about 99% sure I would have the baby, against everyone’s well-meaning advice, if I were in that situation. So instead of face that decision, I have become like a paranoid teenager, freaking out every time my new 25 day cycles (they were always at least 32 days pre-cancer) turn into 28 day cycles. I become so scared sometimes that I am brought back to those few lonely walks to the pharmacy my freshman year of college, when I had to bite the bullet and buy the pregnancy test, go back to the dorm, and pee on a stick, almost wanting to vomit from the fear of what I would learn. I don’t have those “oh, we were being spontaneous, we forgot the condom” moments. I have those moments where I slap Gabe in the face and tell him to get away from me if he hasn’t wrapped it up.

We continue to talk about him getting a vasectomy, as that is the only surefire solution. Condoms are fine, but not 100%, and we are told to go for 100%. It is a strange fact of life that some are up in arms about new requirements for employers to provide health insurance that covers the pill, when I can’t think of any employers who have issues with health insurance companies that provide vasectomies. I also can’t think of any health insurance companies that DON’T cover them. To continue on this theme, I find it hilarious that there are legions of doctors who will give teenage girls the pill and then tell 36 year old men, such as Gabe, that they are too young to make a decision as final as vasectomy. Every man in my parents’ generation of my family had a vasectomy before 30, so times have definitely changed. Finally, how can I explain to anyone that I feel guilty even considering this option, as I still think, in the back of my mind, that if I don’t make it out of this mess, I’d like for my husband to be able to have children with someone else?

There’s so much more behind these conversations that others are so flippant about, these conversations about cancer screenings/exams, abortions, and birth control. So many things that other people have never even thought about. It’s almost not worth getting into—and yet here I am, getting deep into it, for those who are interested in reading about it.

But you know, most of the time I don’t think about these things in any conscious way—they are just there, in the back of my mind, when I roll my eyes at every news article. These thoughts are lurking there when I go to the oncologist’s office for my three month checkup, as I did this morning. Damn, did I rock that appointment—it was the fastest one yet. I weigh the same, have great vitals, I look great! Doc will be here to see you soon! And then lo and behold there he is; I barely had to wait five minutes. He shakes my hand and attempts some small talk. He’s so bad at it, it’s almost—almost—endearing. He asks me if I’m taking any medications, if I feel any lumps and bumps, if my arm has swollen at all, if I feel fatigued, if I have new pain anywhere in my body, if I have hot flashes, if my periods have stopped. I say no to everything, tell him my periods are more regular than they’ve ever been in 25 years of having cycles (“we reset you with that chemo I guess!” whoa is he hilarious), and that physical therapy did wonders for my chronic pain and range of motion problems. Then he takes off my gown, looks at my breasts, raises my arms, feels around, literally uses his hand to push on my chest to gently coax me to lie down, feels my breasts again, and tells me, AGAIN, that I look great.

It kind of felt like a date with someone I didn't really hit it off with, except there was less small talk and in the end I had to pay and walk myself back to the office.

So there it was—I’m 20 months in now, getting closer to that crucial 2 year mark. Afterwards, as I walked from one end of downtown Chicago to the other, I got myself some coffee, gave someone directions to Union Station, and said thank you to a random stranger who shouted at me “I love your bag!” I was far away from cancer at the same time that I was walking directly away from it. So goes the surreal nature of a cancer survivor’s life--so surreal that I thought about posting something on facebook about the oncologist appointment, as I know everyone likes to get those updates, and instead I decided to post this:

Some people go on romantic trips, take walks along the beach, or go to fancy restaurants. 8 years ago Gabe and I got in one of our first big fights--apparently, he was nervous about something. That night, as we sat silently in our flannel pajamas getting ready for bed, he pulled a ring out of his pocket and said: "I'm sorry about everything Kate. I still want to spend the rest of my life with you. Will you marry me anyway?" So, here's to doing stuff anyway.

I included the picture you see of us kissing above. That photo was taken on October 16, 2010—our six year wedding anniversary. I realized after I posted it that people might not understand why I chose that picture to go with the status update (there definitely aren’t any photos of us from February 7, 2004). In my cancer girl mind, it made perfect sense. The status is saying, here we were, in the middle of one of the most romantic moments of our lives, and life was just slapping us in the face, with the fighting, and the flannel, and our own imperfections and regrets and bad timing. Gabe could have waited, could have chosen a more opportune moment to propose—but he didn’t. I could have said something more swoon-worthy than “I’m going to have to think about it. Oh what the hell, ok yes, I’ll marry you.” But I didn’t.

The photo is saying, there we were, in the midst of the shittiest chapter of our relatively short marriage, there I am bald and fatigued and scared and two days away from my last chemo treatment, and my husband laughed and dipped me and kissed me in a beautiful garden as we celebrated our union at a romantic bed and breakfast while my mom watched our kids back in Chicago. We could have waited to go out of town until I was done with chemo—but we didn’t. I could have worn a wig, Gabe could have taken things more seriously, but I didn’t, and he didn’t. We just didn’t.

The status update and the photo are the same. Life is mundane—we eat, give directions, look across the river at the skyline like everyone else on Michigan Avenue. Life is difficult—we have to think about living and dying and contemplate horrifically impossible choices that other people have never faced. Life is romantic—the fog comes down and then lifts, strangers shout out to us in the din, and we feel light and free with happiness as the news of our normalcy sinks in and makes us grin like crazy people all the way to our final destination.

If we had known then what we know now, would we have done it—whatever “it” is? I guess I’m glad I can say yes, to just about everything that’s ever happened to me, everything that I’ve ever done. I could tell that sassy little seven year old girl, the one who used to wear the tshirt you see in the first photo above all the time, that it might be surprising, but it's true: Would I still? Would I anyway? Yes and yes. Why the hell not? Life’s short!

Day 637: Komen, Planned Parenthood, Women, and Sex

It would be impossible for me to ignore this entire Komen fiasco over the halted funds to Planned Parenthood, even though I would really like to ignore it. So rather than talk about Komen directly, or Planned Parenthood, or abortion or politics or pink, I want to talk about one specific topic:
Sex.
It has to be said—every aspect of women’s health, and often of women’s lives, is often reduced to this. We are sex objects at the same time that we aren’t supposed to actually like sex, or want sex, or make decisions about sex. Someone decides that an organization that provides a wide range of health services for women should no longer be given money, and the underlying reason (regardless of Komen’s overall goal to not give funds to groups under Congressional investigation) is that sometimes—after they have sex—women get pregnant when they don’t want to. If an organization that might save women’s lives is willing to accept this, it apparently does not deserve to exist.

And how does this happen? How do we get marginalized into talking about sex or sexuality when we should be talking about living or dying? Well, here’s an example of how that happens. We find out that we have breast cancer, and it is terrifying, and sad, and unbelievable. And then the world wants to save our breasts. Not US—our breasts. Our tatas. Friends joke about how they would definitely get them both cut off so they could get bigger and better ones for free. Doctors try to lead us to believe that deciding between a lumpectomy or a mastectomy is a “personal choice” that should be based on what will make us feel “more comfortable.” Nurses counsel us on dealing with our body image—or our husbands’ or boyfriends’ reaction to our new bodies—as if following the operation, we will be somewhat less than whole. Because something has happened to those beautiful breasts.

Or, the world wants to save our hair, to protect the world from the vision of a bald woman, through a relentless marketing blitz for wigs and hair coverings. Men cry when they find out our long beautiful red hair will fall out. Women tell us we are beautiful “anyway.” Everyone and their mother tells us “it’s just hair, it will grow back,” as if to say dear God it’s really not just hair, you strange bald freak, and boy I cannot wait until it grows back so I can look you in the eye again. The world even wants to save our faces. We are offered “beauty” classes to show us how to hide the discoloration in our skin left by chemo, how to draw on eyebrows where there are none, how to stop looking tired, how to stop—STOP IT GODDAMN IT! Stop looking sick!

And so often no one thinks, wow, she just lost a body part—she just had an amputation. That must feel different, that must be strange when you move your arm and notice something’s missing. No one says, I wonder if her head is just cold, perhaps I could knit her a hat? No one asks if it hurts, if you’re scared, if you’re still attracted to your husband.

Perhaps it’s too easy for me to say these things. I am sitting here now with a normal head of hair, a remarkably well-functioning body, the same face I’ve always had, and by God a decent looking pair of perky breasts of my own. A little scarred and tattooed maybe, a little dented in one place, but still perky, still mine. But I lost so many things myself, so many things—and none of it felt the way other people thought it would feel. I didn’t feel unattractive. I didn’t worry that Gabe wouldn’t want me. I didn’t think that being bald and scarred eroded my femininity. I thought I might feel those things, I anticipated those losses before they happened, but once I was in it, I didn’t feel that way at all. Because I really didn’t give a shit.

Because I had cancer. And I thought I might die. And I didn’t like being reduced to a perky set of tits, a beautiful head of hair, and a pretty face. I wanted to live and be healthy and know that my body could do the things it could do before I had cancer.

I wanted doctors to listen to me. When I said that chemo-induced menopause was the second most depressing thing that ever happened to me from cancer (after fear of death), when I said that my “impotence” (we don’t have a word for it for women, do we?) made me feel like someone else, when I said that having somewhat painful sex three times a week was unacceptable to someone who had been used to having wonderful fun sex every day, I wanted the doctors to look me in the eye and HELP ME. Not look away embarrassed, make sly comments about my husband, tell me he was a lucky guy, say just wait, tell me well now you know how it is for many women, or shrug and say at least you’re still alive. But Doctor this is crazy! I’m sure your husband understands. Excuse me, is he even here? Has anyone ever told a man dealing with impotence for any reason that it is irrelevant, unimportant, or the least of his problems? (For that matter, has anyone ever told a man with testicular cancer, well, you only have it in the one, but we’re going to take the other one too—you don’t need them to live? Has anyone ever proposed halting funding to clinics like Planned Parenthood because they provide vasectomies? Or pulled ads from NFL or NBA games because one of the players commits a rape?)

I wanted to think that if it is common for women with lumpectomies to have recurrent mastitis due to “mouth to nipple contact” (these MDs apparently can’t say “kissing or sucking your breasts”), someone could have told me that rather than treat me like I was 11 years old. I’m sure that husband everyone always seemed so worried about would have liked that too; he would’ve appreciated the opportunity to NOT pass on to his wife an infection that gave her a 103 degree fever, almost sent her to the hospital, required a 10 day course of strong antibiotics, and made her believe she had inflammatory breast cancer.

What’s more important in the medical field—infantalizing women by doing things like asking their husbands of 20 years to leave the room during breast exams because the staff is too embarrassed, or actually giving us good information and access to care? What person in the world, man or woman, thinks a mammogram is sexual? Why are men—often our closest confidants, the ones who shaved our heads, held our hands while we vomited, changed our bloody post-surgery dressings, and swabbed our hips with alcohol before they gave us painful shots to stop our white blood cell count from plummeting—not allowed in mammogram waiting rooms? Who really thinks that women will feel embarrassed to be around men in their hospital gowns when waiting for an exam that is excruciatingly painful and might tell you that you have a life-threatening illness?

Why is it always about sex?

Or never about sex, when you need it to be?

Women have breasts, and uteruses, and we are the only ones who get pregnant and we are generally the ones who get breast cancer. But as a society we have this need to see women as simultaneously over sexed (pole dancing for fitness, anyone?) and sexually naïve or incompetent (good girls don’t talk about those things!) We hammer information about pregnancy into teenage girls heads, push the pill on every 18 year old in the country, and don’t seem to care what the effects of such decisions are. We don’t care about the side effects, the link to triple negative breast cancer, the insane 80% rate of HPV infection among American women. (Can I get an Amen for being in the 20%? Yeah I was that kid in high school whose keys hung on a chain that said “No condom no way.” And yes, there was a condom inside that keychain). That’s why there are outcries against the only cancer vaccine that has ever been developed, because rather than focus on the amazing lifesaving potential, we are wrapped up inside someone else’s panties, worried she’ll do the wrong thing. I’ll say it again: Lenny, you can decide never to have sex in your life, or start having sex when you’re 13, and I will still love you and want you to live. I will not deny you access to Gardasil in order to protect you from your own hormones, your own desire, or your own life. I won’t do it.

Women are sexual beings, with sexual bodies. So are men. But men get to be just that most of the time—men. They are allowed to be fathers, husbands, friends, co-workers. And on the other side, so often, we get to be wombs, tits, hair, battlegrounds for other people’s repression or cluelessness or bullshit.

That’s what I see when I read an article about Komen and Planned Parenthood. I see myself, bald, tired, scarred up and tattooed, with no eyebrows, suffering from sexual dysfunction, walking around the streets of Chicago in my fashionable clothes, ignoring all the assholes staring at me. Walking around. Still alive. Still worth saving.