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.

Day 964: Breasts

I've been writing a breast cancer blog for what, almost three years now? God, that sounds strange. That means that I might make it to that magical three year mark, that timeframe that is supposed to be so relevant for us triple negative girls. So I've been writing this blog all this time, and I realize that I haven't written very often about...

Breasts.

As in, my breasts, the entities that started this mess.

Oh, I know I've written about how I've always liked them, or didn't think they were small before cancer, or how people tell me I have beautiful nipples or how amazing it is that they still look so normal after all this shit. I've posted pictures of my scars and radiation burns. I've described the heartbreak of weaning my son.

But I haven't talked much about what it's like to have breasts after you have breast cancer.

Many women don't have breasts after cancer, or perhaps they have one, in the singular. Others have manufactured breasts, which is also different. A lot of women wonder how or why you'd want to keep your breasts after cancer, as if they are actually personally responsible for the disease; the idea of having to get mammograms is equally repugnant to some.

And I get it. I get that I'm lucky to still have breasts, and that at the same time my decision to still have them will bring me at least semi-annual bouts of panic and fear. But breasts after breast cancer are just not the same as breasts before breast cancer, and that's what I'm writing about today.

See, before cancer, breasts are a source of wonder and enjoyment in your life. I've had these 34b boobs since age 14 and they always seemed just perfect to me--easy to fit into clothes, not too small, apparently amazingly awesome and seemingly blessed with superhuman powers in the eyes/hands/mouths of teenage boys and later men. They were an erogenous zone for me and for other people. They hurt before I got my period, they swelled when I was pregnant, their existence helped me figure out which guys were assholes based solely on how they talked about them or referred to them. They fed other human beings. They served as a nice place to rest my hands when watching TV (sorry, ladies, I know we've been trying to convince men since cave times that we don't play with our breasts but WE LIED).

And then...my closest call with death is brought to me courtesy of these breasts. I go through painful and (somewhat) disfiguring surgery. I burn myself. I learn that my husband can almost kill me by passing mastitis to me by kissing the breast that had cancer. I can't feed my baby with them anymore. I can't wear underwire bras due to the location of my scar and scar tissue. I have to modify exercises and learn to carry things in a different manner. I find our collective focus on them as a society to be pointless and offensive.

My attitude towards them has changed, but it's subtle, in the way that so many cancer-related things are subtle when you are not deep in the weeds of treatment. I am still very happy with what I've got left. I still allow Gabe to play with them and kiss them (well just the one, no more mastitis thanks) as much as he wants but that's what it is, allowing him to do something I used to enjoy. I still buy the cutest bras I can. I am still amazed that they are so symmetrical. I don't do breast exams because I feel my breasts every day. I am aware of the pain in my pec muscle, a vestige of radiation, every time I exercise.

And the things that might make other women happy just scare the living shit out of me.

The other day, I noticed that my right breast seemed bigger, fuller. We all know that nursing causes that nice slope to the breast, something that manifests as "sagging" if you've got larger breasts, but was barely noticeable for me. Due to that slope, my cancer side actually looked perkier a lot of the time (thanks for the plumping, radiation and scar tissue!). Now all of a sudden, the right one seemed...big. In a nice looking way. I was reminded of the full perky breasts from my pre-baby days, a subtle difference for me, the woman whose body seems hellbent on looking the same no matter what happens, but there all the same.

I was terrified. Sure, this happened right before my period started. Sure, I was having pain in both breasts for a few days, probably due to hormonal changes with my cycle. Sure, I've gained about three pounds and maybe some extra ounces went to my breasts.

Sure.

I tried to ignore this, but two days ago it just seemed crazy. I stripped my top and bra off in the most un-sexy way you could imagine and demanded that Gabe look at my breasts and tell me if the right one looked freakishly large in comparison. You ask your husband to give you an assessment of the size of your tits, this guy who has been enjoying them for the last ten years, and if you haven't had cancer you expect a different answer than this:

"Yeah, I noticed that. Is that because of your period? You should keep an eye on it. Maybe call the doctor. Or give it a while, and then call. Yeah, you should call the doctor."

The following day you strip down again and this time you are pleased that the right breast seems smaller and it doesn't even seem weird when you hear the relief in your husband's voice when he says "yeah, it's smaller, looks more normal now. whew!"

Then today it's bigger again. Some women would flaunt the extra cleavage, especially since we're going out tonight for Valentine's day.

Me? I called my oncologist. I'm still waiting to hear back from him. Maybe he will tell me to wait, maybe he will tell me to come in, maybe he will order tests, maybe he will tell me that I'm fine and I look great which is what he usually tells me. I have no idea. So, I wait.

That's it this time--no deep thoughts about life, no poetry, no larger worldview context. Just a youngish woman with perky but lopsided breasts who understands how symbols of life can also be symbols of death. This post is just to acknowledge her, this woman who is waiting for the phone to ring, daydreaming about a day in May when she could say she made it to some milestone, thinking about how a once-proud sign of womanhood that our society has never figured out how to take seriously could turn into this, a possible portent of bad things to come, reminding you that the body is a mystery in which often neither the perpetrator nor the hero is ever revealed.