Day 318: Walking in the Shadow of Men

Every once in a while when I sit down to write this blog I am made painfully aware of the shortcomings of using this kind of format to tell the story of a life. I suppose that's all right, since this isn't really the story of my life, but the story of my cancer. It's just hard at times like this, when I have a lot of other drama going on that is alternately made much more difficult because I am a cancer survivor and much more meaningless for the same reason. I don't mean to be cryptic; I simply have a lot of things going on now that are very stressful, but I can't really write about them on a blog that spews information into the ether, because after all, this is my life, and I need to protect it.

So instead of writing about the things I'd really like to write about to get them off my chest, I am going to go back to a few old themes. Last night I was up for hours, upset and worried and scared. My breast has mostly healed from the mastitis and it is only slightly red over the scar. But it feels so hard underneath the skin, and last night it just felt like a round rock. Only someone who has discovered her own breast cancer can understand the fear that feeling that rock struck in my heart. Gabe told me it was scar tissue, that I would be fine. He said "I know you'll be all right." I kind of lost it there. No, you don't know that. I don't know that either. We don't know anything. Wanting it does not make it true. I cried, he held me, I admitted that I don't want to die, that I can't imagine that it's possible that I might die, that I feel so normal, so healthy in spite of this cold I've caught from the kids, so alive. And then today, I made myself feel it again, and while the hardness is there, the rock seemed to have moved or disappeared, and I realized that cancer doesn't behave that way. That doesn't mean there's no cancer in my breast--I won't know that until the end of next month when I get the first follow-up mammogram. It just means that I can go from death's door to normalcy in the relative blink of an eye.

I haven't cried that hard in a while. I'm glad I did that, and that I admitted to all of those things that I know it pains Gabe to hear me say. It's such a strange trajectory of emotions that this trip provides. Any moment of happiness, such as the realization that all of a sudden my hair is wild enough to perhaps require a proper haircut (look how crazy it is in the first shot! and how red, if I do say so myself), can bring me crashing down. I clutch at my hair and think, don't take this away from me! I act like someone with two personalities. I employ a contest of wills with my sometimes difficult daughter during the day and then crawl into her bed at night after she's asleep and cuddle with her and stroke her hair. I should say that I have never co-slept, and I could never stand the thought of having the kids in bed with us. I just needed that last night, and it seemed so selfish and irrational. She couldn't sleep well with me there, but she didn't ask me to leave. I felt like we were switching roles for a few minutes.

Ah cancer, that impervious roller coaster! After I came back to my own bed last night, I continued to read Bright Sided, the Barbara Ehrenreich book I've mentioned in this blog previously. I am finally reading it, and I love it. I feel so validated in finding someone else who is so aghast at this idea that we can change our fate just by thinking happy thoughts. I'm not the only one who is angry at the implication that I am at fault for having this disease, that I am in charge of willing it away, and that I need to just work on my own internal shortcomings and I will be healthy again. I lay awake for a while thinking of what to say about this in the blog, and I should have written it then, when I was very pensive and deep. The first thing I thought was that I have some previous experience with the ridiculousness of positive thinking as a way to solve all problems and avoid suffering. After all, I suffered a decent amount when I was just a child. I was so happy, and at home in my own skin, and imaginative. My brain misfired anyway, my legs couldn't hold my weight. What emotional or intellectual sin could I have committed at age six, age nine, to deserve that? It doesn't compute.

Does anyone realize how emotionally exhausting it is to be positive about something that is awful? You have to first tell yourself that your original feelings (shock, terror, sadness, depression) are wrong, and then you have to try to change yourself and conjure up some irrational emotions that have no place in something like cancer. Cancer is enough of a second job, why add a third with the personality adjustment? Life can be sweet, regardless of the circumstances, but CANCER IS NOT OK. Breast cancer is not some mild disease, something that makes you stronger or prettier or better off in any way whatsoever. Of course it isn't. Cancer is bad. There is a reason that humans were supplied with negative and positive emotions, and I think the reason is so that we could tell the difference.

There is a time for everything, we have learned. That was written a long time ago, but out culture is built on the surrounding assumptions of that statement. Why have we moved so far away from that? Why are we so convinced that there is no time to cry, no time to be sad or afraid? Cancer is the type of thing that calls for negative emotions. It is not a time to dance, but a time to mourn. I still dance, and laugh, and love and all of that, but not because of, but rather in spite of, breast cancer.

Bright Sided points out the huge amount of money that we spend as a society trying to make everything seem ok, trying to pull ourselves out of various funks and smiling through the things that make us suffer, like illness, layoffs, breakups. At best, we tell ourselves that it is ok to be sad or depressed for a very short period of time, say a day or two, and then we need to "get over it" and if we can't, we need to go to therapy. I know that therapy can help people. I am not against it. I just don't see what it could possibly do for me when dealing with cancer. If I were unable to function, alienating myself from people, staying home from work, drinking and driving, sleeping around, ignoring my kids or engaging in some other kind of destructive behavior, I could see the need. I mean, I'm sure Charlie Sheen needs some therapy. But I, and most people with cancer, am fully engaged in the world and doing ok, better than some people who don't have this cross to bear. That doesn't mean that cancer doesn't suck.

Why shouldn't I find the whole thing unfair, terrifying, sad? In all honesty I wouldn't want someone to take those feelings away from me, to tell me to find a way to make lemonade out of this lemon. I need for this to be a terrible thing in my life. If cancer is not terrible, if it is just one more thing, then the minor things that really are just one more thing to endure can blow up and become more important than they need to be, and the positive things become less wonderful.

We understand this kind of weather in the midwest. It has been relatively warm at different intervals this week. People just completely lose their shit when this happens in Chicago in March. We see 60 degrees in the forecast and people start ditching work, they leave their coats at home, find excuses to go outside even if it's pouring rain. Everyone talks about the beautiful weather. Would we do this if it hadn't been so damn cold for so long, if that blizzard hadn't knocked us on our collective ass just a little over a month ago? Would we be so exuberant about weather they experience every damn day in California?

I guess what I'm trying to say is that I think the way we have taken breast cancer and turned it into a battle to be won (God forbid you lose, and have your "survivor" status stripped from you in death), a gift to be thankful for, a sisterhood to embrace, has terrible consequences for those who have the disease. It reduces human suffering to an excuse to buy a pink teddy bear.

Last week I was researching lymphedema sleeves because I haven't flown since I've had cancer, and I wanted to get a sleeve before I do. In my search I came across the blog of a young woman, age 34, who was diagnosed with triple negative breast cancer. Her blogs were so positive, filled with vim and vigor and a great fighting spirit. She talked about her amazing support system, her wonderful boyfriend, her general strong body and overall good health, her excellent habits related to diet, drink, smoking, etc. Every blog had this positive spirit. But so many entries also brought more bad news. She found out she was stage 3. She had a hell of a time on A/C chemo but said very little about it. Her hair came back, but she developed severe lymphedema. And then, less than two years after initial diagnosis, her cancer metasticized. She seemed to feel fairly well until the last few months, when she must have suffered terribly. She died when she was 37.

Those last few blogs were extraordinarily painful for me to read. They were all positive, even when she was writing to tell people that she was in hospice and she would rather have visits than phone calls because it was too hard to speak. All I could think was, you must be so incredibly scared, so sad, your boyfriend and your parents must be sobbing all the time, this is so unfair and stupid. And I wished for her that she could have given voice to those things, that she could have admitted that dying wasn't ok, that she wasn't strong anymore. All of the things that she had talked about that made up the story of her life--what a shame to lose that promise. What a bunch of shit.

It reminded me of two things. Years ago I saw this wonderful documentary called, I think, Silverlake Life. It was directed by two gay men who decided to film their life together when one of them was diagnosed with HIV. The other man contracted it as well, and one of them died at the end of the film. The movie is incredibly well done, and most of it is about their lives, in all the surreal ordinariness of any life. It is also filled with the crazy scheduling and work that having a disease like AIDS entails. Finally, it is a chronicle of the disease's ravaging nature, as you see this vital healthy man reduced to a skeletal form, unable to move in bed, sores all over his body, unable to talk. The camera rolls while he dies. His partner cries and asks, isn't he beautiful?

The genius of the film is that of course he is, and of course he is not. His life was beautiful, his disease and death were painful and sad.

The second thing I think of when I want to rail against the prevailing notion that we all could just heal ourselves if we were happy enough, brave enough, is the following two words:

Walter Payton.

I've said it before--no one could be in better physical condition, more generous, more positive, more deserving of good karma and fortune. There was a sports hero worthy of the title, so far removed from the thuggery and misogyny and felonious behavior we see today in the NFL. And I've mentioned it before that I think it is interesting how we never invoke his name when we talk about heroes with cancer. We talk about Lance Armstrong, Sheryl Crow. We talk about the people who lived. More than that, we don't mention him because just a few short months into his diagnosis, he was forced to give one of those press conferences when he was supposed to get up there and say that he would fight this, that he would beat it. He was supposed to talk about hope and inspire us. Instead he got on camera, gaunt and sickly, a shell of his former physical prowess, and he cried. He said it didn't look good for him. He thanked everyone for their concern.

I loved him for that then, and I love him more for it now. I have tried to bring some of the reality, some of the humanity, to cancer in this blog, and I don't know if I have succeeded. I can't have done as well as that image. Thank you Walter, for the beauty of your life before, and for making it ok for those with cancer to cry, to be afraid, and to even admit defeat. You showed me that I don't have to deny these feelings or pay someone else to change them for me, that I don't need to be normal or cheerful all the time. I know how much you wanted to live, that you would have given all of the things you had achieved before in life for that. If I hear one more person say that you just need to believe it and it will come true, I will ask them what parent they know who wouldn't cut off their legs instead of miss their kids' childhoods. One minute your body performs at the highest level, and the next it betrays you. That is enough of a contradiction that it is unnecessary to expend energy trying to create more contradictions. Life is a gift and the things that threaten it are a curse.

At least twenty times a day I actively wish that I will live. Every time I look in the mirror I tell myself that of course I will make it, look at me! I seem young, healthy, attractive even, alive. I allow myself to envision conversations with my kids when they're adults. I make plans for the future. And yet...I acknowledge the man as well. The one who stands behind me with that gun at my head. Will he pull the trigger? Will he walk away? And I realize that is it by imagining him that I have saved myself. I cannot make him leave, you cannot will another person out of existence. By seeing him, I can cut myself a break. There might be someone behind me who I can't shake, so instead of spending precious time trying to do the right thing to make him change his mind, I do the only thing I can do. I feel the gun's metal on my crazy wild hair, I hold my head up and just keep walking.