Sunday, September 29, 2013

Day 1,196: The Voice

Some of you know how I have spent the last day or so. I had a fever, it got worse, I was told to go to the ER to make sure I'm not neutropenic and subject to infections that could kill me or about to have pneumonia or any number of a million different things that can happen when one is on chemo. We had to scramble to find a sitter to watch the kids for a few hours before a friend came over to watch them. I felt like shit, so I didn't want to drive myself; I also had flashbacks to the last time I went to the ER during chemo, and I drove myself thinking it was no big deal, and I was admitted for two days due to heart trouble. So I got prepared, and packed an enormous Harry Potter book, a toothbrush, deodorant, etc., expecting to stay a while. We drove out of the neighborhood to the hospital where I receive chemo, since I would rather be admitted at the place where all my doctors are.

We waited over an hour before I was called to go to a room, and I shakily stood up, wearing an attractive protective mask on my face, and at that very moment, this thing straight out of a TV show happened. The woman who had called me said, wait, go back, I was just called outside. Ten people went rushing out to the stretcher that had just been brought inside; we could all see them doing emergency CPR on this woman. I had to wait another 45 minutes to get my room. In the meantime, Gabe overheard the story, and at one point it sounded like they were going to call the time of death. Apparently this woman was having trouble breathing so she asked for her inhaler. A friend was driving, her son was in the car. And then--she stopped breathing and they were stuck in traffic. We all thought she had died. But later, when I was getting a chest X-Ray, we saw her, not looking well, but still alive.

Sometimes, doctors do amazing things.

I received good care, all of my labs and blood counts were good, and after six hours, we went home. My fever has subsided but I have been sick as a dog today; I weigh four pounds less than I did yesterday. I'm probably just sick, like a normal person; but the reality is that chemo exacerbates the effects.

In the hospital, when the "real" doctor finally saw me, not the resident, not the med student with his flowing blond locks, I had an interesting experience. After hearing the litany of medical things that have happened to me in my life, he just kind of talked to me, as if he respected me and what I had gone through, so maybe, just maybe, I knew a thing or two. I refused the IV, because I hate them and I'm trying to save my veins, and said they should just take the bloodwork without it. I almost refused the chest X-Ray. And he just said, you're the patient, you can refuse whatever you want. We will do what you tell us to do. And then, he told me that I look great. I said, damn, people ALWAYS tell me that. And he said, well, it means something. I've seen people who just look...well they don't look good. You're not one of them.

Story of my life.

But he got me thinking when he said that they would listen to what I wanted them to do with me. Actually, a lot of things have got me thinking this week. A friend wrote a comment on one of my posts thanking me for being a voice for women with breast cancer, because she feels like she lost her voice the moment she was diagnosed. I've been pissed off about various offensive ad campaigns that make breast cancer seem like some kind of rite of passage, some kind of off color commentary, related to training bras and mammogram parties and all kinds of other ridiculous things. I've been thinking about the twitter pic someone shared where a woman posted a picture of herself with the caption: "sometimes I wish for breast cancer, so that I could do chemo, get skinny, and get a free boob job." I've been thinking about an article shared by a woman whose fourth bout with breast cancer has turned out to be mets, wherein this comedienne, who is a breast cancer survivor, claims that other women with breast cancer are just seeking attention and using cancer as a badge of honor because they have low self esteem. I've been thinking that this is the last Sunday of NFL football without convicted felons wearing pink shoes. I've been thinking about the enormous amount of appreciation and love we have received after posting that simple interview about what Gabe thought of my mastectomy.

And all of that has led me to think this:

It is important to have a voice, and to be a voice for others who feel they have lost theirs. It's especially important for women. It is important because if we don't speak for ourselves, someone else will speak for us, and what they come up with will be a huge load of bullshit.

Breast cancer is a celebrity disease. Everyone knows us, everyone understands us, everyone lives in our bodies and our minds and our lives. Except they don't have a freaking clue. When I had epilepsy, I did not feel the need to talk about it much, in part because my experience with it was relatively manageable, but also because no one was out there telling me how it should be for me. Epilepsy was not a JOURNEY. It was not a rite of passage, a stepping stone to a better understanding of life. No one elbowed me in the ribs and talked about the shit going on in my brain. No one told me I would stop having seizures if I just had a better attitude. It was an illness. A neurological mistake. A thing that led me to take poisonous medication that eventually reached an intolerable level of toxicity in my little body. A condition that left and came back and could come back again, any day now. No one told me how to define it, how to live with it, and so I did it my way.

And I learned things. I learned to not always trust doctors. They have egos, and sometimes they're wrong. My car accident taught me the same thing about the police, and government officials. I learned to speak up for myself, at 8, 9 years old. No, I won't sign that form until my parents are here. Mom, I don't want to take that medication anymore. I learned to stand up for myself, to tell other kids who said that people with epilepsy were "retarded,": Really? Well, I have it, and I'm in your class, so what does that say about you? I learned to explain in straight language why I was in a wheelchair and make no apologies for it. As a teenager, dealing with all the sexual harassment and all the things I've talked about before, I learned to be mean, to fight with my fists, to yell and be a bitch and do whatever I needed to do to protect myself.

As a cancer patient, I have fought with my doctors, disagreed with them, refused certain forms of treatment. And all of that has led to positive, not negative, outcomes for me. Screaming like a crazy Medusa, long curly red hair flying and blood on my gown from the mammogram they made me do soon after my first lumpectomy, got me brought back into the doctor's private office to read the radiology results myself. Crying and invoking my status as a young mother of a baby after I learned that I needed a second lumpectomy got me a surgery date 16 days earlier than what I had been offered. Standing my ground and looking the oncologist in the eye enabled me to take a form of chemo this time around that is less toxic and less likely to lead to long term permanent damage if I am lucky enough to live that long. Refusing reconstruction in an adamant, stubborn voice, was the only reason I was offered the one-step reconstruction that spared me multiple surgeries and long recovery times and enabled me to wear a bikini ten days after my mastectomy. And so, women with breast cancer, that disease everyone knows so well, I'm telling you this:

We don't get anything from silence but someone else filling the void.

I understand that not everyone is like me. Many women don't like to fight, don't like confrontation. Women are taught to see the best in people, to believe that when others speak for them, they are doing it out of a sense of compassion, even if that's not true. Many women don't know what to say, whether it's about cancer, or sexual abuse, or gender roles, or what have you. And that's why I do this. Because every once in a while, a teenage girl writes me to thank me for what I wrote about the issue of consent, and she shares it with a bunch of high school kids I will never meet. Every once in a while, a woman writes that I have written something that has helped her gather her thoughts and understand herself better. Every once in a while, I can give someone else the gift of having their voice heard, such as when I interviewed my husband about my mastectomy, and he really didn't want to do it, and I had no idea what he would say. But I live here, and I know what it has meant to him to see the response we got from that strange little moment of public intimacy.

And of course, more than anything, this has brought me back to myself, to the real Katy Jacob, the one who was always thinking about things in a strange and circuitous way. People the world over might think they know all there is to know about breast cancer, about women, about femininity and sexuality and gender roles and marriage and friendship and parenthood and everything else; people might think they have a right to tell you how it is for you, or how it should be for you, but being me and doing this allows me to say this:

My story is mine to tell, but this story sits inside a much larger story, one that relates back to all the people, those I know and those I don't know, those I've met and those I might never meet, those whose voices are much stronger than mine and those who will never speak. It's just a story, but it's not a simple one, and it's not exactly what you might expect.

But by telling this story, all along, since I was a little girl, whether softly or loudly, I have claimed myself before anyone else had the chance.

Wednesday, September 18, 2013

Day 1,184: A Man's Perspective on Mastectomy

As we are about to enter the fresh hell of Pinktober, when all sorts of normally reasonable people begin to wax nostalgic about the tatas and talk about free boob jobs and basically make women with cancer out to be some kind of heroic porn stars in the making, I thought I would interview a guy about what it's like to love a woman who has had one or both breasts cut off of her body. And the only guy I could think of who would agree was my husband. So here's Gabe's two cents on the whole thing.

K: So in general what did you think when you first heard I had a recurrence? Were you surprised? What did you think would happen?
G: I felt despair. I was crushed. I was absolutely surprised. I didn’t want to think about what would happen.

K: OK. We won’t talk about that part anymore. What about when you found out I had to have a mastectomy?
G: I guess that was inevitable.

K: Did it make you sad?
G: Absolutely. Your breast is a part of you.

K: What about thinking about how I would look or whether I would be sexy or whether you would still be attracted to me?
G: I love you and I care for your body. It’s a part of you. It’s one of many aspects of you that makes you who you are and losing a piece of that is sad. But it’s just one tiny facet. I was worried your reconstruction would fail and you would go through all kinds of extra procedures and infections and they’d have to pull the whole thing out and start from scratch. I kind of didn’t want you to do the reconstruction. It seemed like a waste of time and energy.

K: Would you have thought it was weird if I had just one breast?
G: I think it’s weird that you have cancer. I don’t think that anything else matters in comparison to that.

K: OK, so I did decide to do the reconstruction and I looked at it right away and it seemed ok to me. I wasn’t sad and I didn’t have body dismorphia. What do you think about it?
G: I was worried about a big surgical seam in a part of your body that’s under pressure from an inflatable bag. But now that it’s healed and the necrotic flesh has been removed (!!) I don’t usually think of you as having only one breast.

K: What about the lack of nipple and the scar?
G: The lack of a nipple is sad. It’s like having a toe or finger cut off. It’s a sensitive area and you don’t have it. The scar is just like your merit badge for being a cancer survivor.

K: How do you think I look when I’m naked?
G: I think you’re gorgeous and you have an amazing body and I barely notice the fake boob. You know when they have those pictures of people they want to keep anonymous so they blur their faces? The fake boob is like a blur over that part of your body.

K: Do you think it affects our sex life?
G: No.

K: It must be different touching that though.
G: That breast has been kind of hands off for years since I gave you that mastitis so I don’t know. But it does feel cold relative to the rest of your warm body. That’s a little strange. I mean in the winter will it freeze?

K: I think you’re going to get shit for saying that. Anyway, it’s almost October, and we’re all going to be inundated with obnoxious crap about boobs and tatas and second base and cancer. Does me having a mastectomy change any of your feelings about that stuff?
G: No. It has always pissed me off. It trivializes and belittles a really serious problem. We don’t have a rescue the willies month for prostate cancer. For men’s problems, we take it seriously. For women, I guess we figure you should just suffer anyway because medicine was designed to help men. Old white men in fact.It’s you having to do chemo again that really makes me just (long pause)…furious. I think it’s wrong that so much money and research has been devoted to new chemotherapies to prolong life a little bit as opposed to more work to determine if chemo is even necessary.

K: Well they are working on that, and there is information for that for estrogen positive cancer.
G: I know. I’m talking about you. I’m talking about triple negative breast cancer.

K: They have studied TNBC and chemo is supposedly highly effective for us.
G: I wouldn’t call an extra 5 to 7% chance of it helping highly effective.

K: Well, it’s only that effective for me because my chance of recurrence is already low. And obviously I did everything and my cancer came back anyway. So are you saying that you don’t think I should do chemo?
G: I wish you didn’t have to and we’ll never know whether it worked or not.

K: If I’m still here in 10 years maybe it worked I guess.
G: Or maybe it wasn’t necessary.

K: Do you think I’ll be here in 10 years?
G: I don’t know. But I intend to make the most of the time we have together (crying).

K: Sorry, I didn’t mean to make you cry. Anything else you want to say?
G: I love you no matter what.

K: Any last words about the mastectomy?
G: I hope you never have to use the implant as an emergency hydration survival tool during the zombie apocalypse.

K: OK we’re done here. Can you go help the kids with their bath?
G: Yeah ok. I didn’t want to do this interview but it wasn’t as bad as I thought it would be. I wish it wasn’t necessary to talk about any of this. I wish you didn’t have to do it.

K: Me too, babe. Me too.

Thursday, September 12, 2013

Day 1,178: You Can Take Your New Normal and Shove It

I'm so over this idea of the new normal. What is normal? Who is normal? Have I ever been normal even for a single day? Why is normalcy even the goal?

We cancer patients hear this all the time. This is your new normal. Here are ways to cope with the new normal.

There are all kinds of things I've been thinking about writing, and all kinds of other things that I have done instead because I get too pissed off thinking about stuff. I think it is a grave injustice for people to talk about the new normal to folks who have had cancer. First, there is the assumption that our previous lives were "normal," and that cancer is just this huge bitch-slap in the face that destroys our sense of self and makes us call out the injustices of the universe.

I call bullshit on that.

Breast cancer is a terrible disease. The treatment for it is brutal. The surgery is disfiguring. And no matter what the "survival" statistics state, 30% of women with early stage disease will later be diagnosed as metastatic. So the death rate is at least 30%, since metastatic breast cancer is lethal 100% of the time.

So, it's not exactly...normal.

And yet, it is. Cancer afflicts people from all walks of life. That is true of all kinds of suffering. It is not abnormal to suffer, for life to be hard and even debilitating. That is a pretty regular state of affairs. I have conflated my experiences with epilepsy, my childhood car accident, and even sexual harassment and abuse when talking about cancer not because I think they are the same things, but because in some strange way all of those things prepared me to do this without having the same burden of other women for whom breast cancer is one of the first really bad things to befall them, or at least one of the first bad things that changes their bodies and their physical abilities.

It's hard to not be able to walk, or go to the bathroom by yourself. It's hard when your brain misfires 100 times a day. It's hard when other people see you as a body to try to use or hurt for their own selfish purposes. But experiencing these things does not mean that you are suddenly ABNORMAL or in need of a new normal.

It's just life, the way a lot of people live it, and it's better than many people's lives.

I mean, look. I don't want to be in menopause at my age. Everyone knows that. I want to hold on to my cycles and my sexuality because they are mine and because it's not my time yet. But 50% of the human race will go through this change if they are lucky enough to live long enough. And people do it. And then we turn this huge change in life into some kind of punch line, because we don't know how to deal with women and their issues, and we don't know how to deal with anyone and their suffering. There is some kind of collective desire for it all to just GO AWAY, it seems.

I have never wanted to "get over" my various issues in my life. I have never felt that they should just go away. I have always just wanted to learn how to live with them. I've used this analogy before--it's like when the women's magazines try to tell skinny girls like me how to find jeans that hide/distract our big booties. Um, I don't want to hide it. I just want pants that fit.

That's it--I don't want to get over it or make it go away and I don't want to sit here in some weird ennui of new normal. I just want to fit cancer into my life, because I have to, so that it doesn't try to take over and fit me into it.

When you throw normal out there as the goal, it has huge and unfortunate consequences. I have heard from young women--some of them so much tragically younger than me--wondering when they will feel that their reconstructed "breasts" will feel normal.

Oh honey, I hurt for you. Because you had cancer. Your breasts aren't breasts anymore and there's no reason they should look like real breasts, because this is what cancer looks like, and none of us will ever have our 23 year old breasts back and the surgeons of the world should STOP USING THAT AS THE MEASUREMENT OF SUCCESS. I have one normal, even kind of perky breast. But it doesn't look like it did when I was 18, because I nursed two babies with it. I have one thing on my chest that has a scar, no nipple, and is cold to the touch because it is a bag of mfing saline, people, not a breast, because that shit was trying to kill me, so I don't want the normal one back, thanks. When I hear women feeling so sad about their "new normal" bodies, it breaks my heart. But my heart only breaks momentarily, and then I revert to myself, and I tweet things like "It becomes obvious that the AC in the office is jacked up too high when you only have one nipple. #justsaying." The things that happen in life are absurd, and we had better be able to admit to the absurdity or even revel in it, because sorry but I don't have time to cry.

And being bald, or fatigued, or having bone pain...these things are difficult, true, but why so much emphasis on acting as if they are not happening? I'm sorry, if my hair thins on this chemo, I'm buzzing that shit. I don't care if I look normal. I don't even know what that means. Was it normal to have long curly red hair? No, it was not, since only 1 in 100 people in the world have this hair color. Bald is bald is bald and so fucking what? And if I'm feeling that crushing fatigue that I felt for a few days during the last chemo cycle, yes, I am nuts, so I will force myself to go to the gym or take a long walk in order to feel better, but I will not feel one iota of awkwardness if I get off the bike and go sit down and people worry about me or whatever. This is chemo, folks, and this is NORMAL for chemo.

It is normal to fold suffering into your life. People do it every day. There's nothing new about the concept. There's nothing heroic about it, nothing badass about it, nothing to focus on except the fact that people do what they need to do with what life has handed them.

I did my third of twelve chemo infusions today. That's #11 for me since July 2010. When all is said and done I will have done 20 chemo infusions during the prime of my life, along with everything else. I'd like to think this will be over in January and I will never have to do it again, but on the other hand, women with mets do this for the rest of their lives, which are too short, and I know that. I hope I don't suffer long term consequences, but I recognize that I might. Cancer has long term consequences. That's the nature of the beast. That's the nature of many beasts. The body is a fragile thing. But that does not mean that those of us--so many of us, in so many ways--whose bodies suffer are ourselves fragile beings in need of reassurance that we are still ok, still normal. Maybe we are not normal, maybe we never have been, maybe at some point down the line we stopped caring about that.

Almost a year ago, I wrote a post in my other blog about Gilda Radner. And what is it that she said, that has inspired so many people who have dealt with cancer in their lives? Did she say that she wished for normalcy? Hell no. What she wanted is what we all should want, because it's the only real thing:

Delicious ambiguity.

Sunday, September 8, 2013

Day 1,174: One Day at a Time

Whenever something life-threatening or life-altering happens, people tell you to take it one day at a time. It's good advice, albeit impossible to follow in many situations. Take cancer, for instance. Cancer requires you to plan all kinds of things, all the time. You are forced to think about the future--both the short term and the long term--at the very time when it might help to just think about ten minutes from now. All the while, you know your plans might go to shit. You plan a thousand appointments. You plan for chemo and the side effects of it. You ask for help with babysitting, with meals, you try to tell your (brand new, out of state) boss what to expect, even when you know that if anything is a given with cancer, it is the unexpected.

You go through this grief and anger over your immediate menopause after your first chemo treatment, only to get your period a few days later, only a few days late in the normal cycle of things. And you are forced to realize that chemo did alter your libido, it did mess up your cycle, but it didn't kill it yet and so there is happiness but also trepidation as you wait for what might happen later. You have a hard time telling the difference between the physiological effects of chemo, the hormone changes it brings on, and the normal cyclical depression that happens each month like clockwork since you started this new puberty two and a half years ago.

Your mom calls because she is making changes to her will, and she wants to know if this change and that change is ok, and you say, you need to take into account the possibility that I might pre-decease you. And she says I don't want to think about it. But fine fine I know.

You start a new job six weeks after having a mastectomy and smack dab in the beginning of six cycles of chemo. Your job is based out of state. You ask for the manual patdown at the airport, more in deference to your husband who thinks it's important to avoid the full body scanner than because of any fear you have of extra radiation, since you feel like the shit has already hit the fan so what the hell difference will it make? You almost forget to say that yes, actually, you do have a medical device or implant. You grab your fake breast in front of everyone and don't immediately realize why you're getting weird looks. You get sick within a day of flying. You talk openly about your cancer with your new colleagues, your bosses, with HR. You ask questions in orientation about pre-existing conditions, health exams for life insurance, family medical leave. You stopped caring long ago what people thought because what people think doesn't matter. You tell them--just straight up tell them, without worrying about losing your job or seeming weak or feeling like you are asking too much--how it's going to be, when you will need to be at home, why you can't travel much for six months, and that you hope all goes well with chemo but you really, honestly, have no flipping idea if that's true.

It's hard to know what to say, especially in this forum where people are waiting for you to say something meaningful, or even just anything at all.

You are no longer thinking about cancer in the way that other women with breast cancer think about it. You live with it all the time, it is like a roommate of yours, so you don't have to talk much, because she's just there, like a piece of furniture in your life. You don't give a second thought to cancerversaries anymore. You no longer feel nervous about seeing oncologists or surgeons. You don't think about making it three years, or five, or twenty. You don't agonize over headaches or pains in your hip and you don't feel angry that you can no longer do pushups. You feel emotional about the real and potential losses brought on by chemo but not in the way you did before, because you are resigned in a sense, you have done cancer before and now you are doing it again, and while it still hurts, the first cut is the deepest.

You have prepared yourself for this; this is the penultimate level of cancer, the one that is much worse than just going through it once but much better than going through it forever. You have been writing about it, telling folks that no, you are not at all sure that you have kicked cancer's ass, and that was never really the point, was it?

So what do you do?

You go apple picking. You watch football. You yell at your kids. You take your daughter to a ballgame and for the first time in your 38 years, a foul ball comes like a shot straight towards you and you expertly put out your small, bare hand and almost catch the ball one-handed until the pain from the impact makes you drop it, but the man in front of you reluctantly gives it back after everyone and their mother glares at him. You help with homework. You turn away from the guy who winked at you in the hotel. You go to a preseason NFL game. You cook for your family and you eat two of your famous curried turkey burgers because you actually have the appetite for it. You buy Halloween costumes. Your libido bounces back for a while and you have sex with your husband every day. You go to the gym. You try to orient yourself to your new job, but you don't sweat it too much. You do laundry and go to the grocery store. You hang out with your friends when you have the time and the inclination to pick up the phone. You no longer think about what you might miss in the future, you no longer live with reverse nostalgia, though every once in a while you turn to your husband in the middle of a casual conversation and say things like "this probably won't end well for me, will it?" or "do you really think I'll ever grow old?" But there is no emotion in your voice when you say it, and there is less emotion in his than in the past when he tells you you will be fine or says God Kate I don't know.

You don't take it one day at a time. You take it one moment at a time. You know that the best laid plans of mice and men oft go astray. You are neither a man nor a mouse and so perhaps it doesn't matter anymore. You just live your life, the one that was handed to you, even though it's not perfect and even though it might be short, because it's hard and it's beautiful, and it's yours.