Over the last year and a half, a lot of people have asked me what inspires me to write about the random things I write about in this blog. Most of the time, I have no sufficient answer for that question. The real answer is something like, well, I had this rare and aggressive form of breast cancer at a very young age, and there are a lot of things about that situation that piss me off, so I write about them here so that people who are around me on a day to day basis can actually stand me. Sometimes there's that strange, postmodern social media-infused pressure to write on certain days, such as Thanksgiving or birthdays, anniversaries or on Christmas. Every once in a while there's good news to report, such as when I have a clean scan, and I know people who care about me would like to hear that, and I know I will never pick up the phone and tell them, unless they are my mom and my brother.
And even more rarely, something literally inspires me to write, and that's what happened this morning when I was reading a story in the Tribune about how Maggie Daley inspired countless cancer survivors in the Chicago area and elsewhere.
As I said in the last blog, I truly admired Maggie Daley for how she got things done, and how she lived with metastatic breast cancer for over nine years. I admired her long before I had cancer myself. To start, I admire anyone who is married to a public figure and manages to keep their sanity. Mayor Daley was like some kind of God here, and he was an international, not just a local, politician. Being married to him meant that Maggie's life was not her own, no matter how private she was. She seemed so capable of keeping her shit together, developing her own interests and passions, and never making any huge gaffes in the media, which is something her husband was essentially famous for doing.
Then, she found out she had an incurable form of breast cancer, and even that had to take back stage to everything going on with Rich. The media handled things well and supported her immensely for the most part, though strange things happened. I can't count the number of stories that have been rehashed about Mayor Daley crying on camera when talking about her initial diagnosis as stage four, about how he seemed dazed and out of it for a while after he learned the news. The implication is that it is surprising that he loved his wife, that he had feelings. But we all knew that! This is the mayor who turned purple and looked like he would explode during the power outage in the loop back in what, 2000? The guy who had nothing if not emotions. So he really loved his wife and thought it was horrible that she would have cancer for the rest of her life, that she would either presently or eventually suffer a great deal, and reporters act surprised?
We're a strange culture. But let me get back to what prompted me to write. This story in the Sunday paper gave many of the quotes that are now familiar to those of us who have been following the coverage of Maggie Daley's death. They talk about how stoic she was, how she never cried, how she went to a public function the day after she fractured her leg due to the metastisis to the bone, how she kept on going, gave back to others, never complained. The story was trying to convey how inspirational this has been to so many survivors of cancer, especially metastatic breast cancer, and here I was, reading it, getting angry, and feeling like some kind of cancer bitch. I was thinking, what is this telling all of us? That it's not ok to cry, to be weak, to be in too much pain to go out, to hate all the public breast cancer functions? Is a Pollyannish attitude the only acceptable way to live with a horrible disease?
I am sitting in the office of my own house while I write this, honestly afraid that stones might come flying through the window because I just said that in a public forum. I am not saying that I think Maggie Daley's example put too much pressure on the rest of us. What I am saying is this: She was an inspiration, because she remained herself through the whole ordeal. She would not have been able to be the First Lady of Chicago for most of her adult life if she was not positive, modest, charitable, and stoic. She was an immensely public figure, and none of us has a clue how she acted at home, and the rest of her family made sure that would be the case. Maybe she cried all the time. Maybe she yelled at her kids. Maybe not. It doesn't matter. What I would like to take from her example is that it is possible to remain yourself through the crappiest of circumstances. I think most people with chronic illnesses, most people who have suffered in any kind of way in their lives, know this. I just reject the idea that cancer is supposed to make you someone else--even if that someone else is supposedly better than the person you were before cancer.
At the beginning of this nonsense (notice I never say "journey"), I wrote in the blog that I felt guilty that I couldn't be that cheerleader type of person, that I hadn't gotten to that point yet. A few people, who had known me since I was a small child, said variations of the following to me: "Um, Katy, you have never been a cheerleader type. You are a tough and stubborn person. You have a great heart but are not particularly sweet. Maybe we could be those happy cheerleaders for you, because you are probably not going to become one anytime soon." And boy were they right, and I will always be thankful for having people like that in my life.
I am the person who never cries in public, or even in private, because I think it makes me look weak, and I hate appearing weak. But I pulled the tears out, forcing myself to sob, I used the image of a young woman brought to tears to get what I thought I needed--an earlier surgery date, some kind of answers from various doctors who were treating me like a child. I did things that would make other cancer survivors shudder with horror for how backwards I was in my response. At the beginning, I fled from my family, all the time. I left for hour long walks several times a day, missed dinner, couldn't even look at my kids sometimes. I argued with my doctors, acted like a know-it-all (we all should in these situations--you really do know your own body better than any damn expert), ignored all kinds of advice. I didn't think of my kids and how they would feel when I walked around bald. I talked to Lenny about chemo. I thought about leaving Gabe on a few occasions, even in the middle of all the things we went through, maybe because of them. I never took up the habit of talking to friends or family on the phone.
And now, I sometimes feel that I've failed as a cancer survivor, at being the kind of person I am miraculously supposed to be. I am still the hard-ass parent, not the one who rolls around on the floor with the kids. Look, they love me, and they are comforted by me, and they miss me when I'm not here. But I still don't like giving back rubs--Augie asks for one and he gets one, for about two minutes. I am always in charge of cracking skulls around here, and cancer hasn't softened that--not most of the time, anyway. The other day I was supposed to tell Lenny to come inside, since it was dark and she was outside with another, older kid, by herself. I went out and yelled in that oh shit my mom is going to get me voice, Lenny! Come on in...oh well you can come in in a few minutes. I saw her sitting on top of our plastic playhouse in the backyard, with her crush who is five years older, talking to him in the dark. I couldn't make her come inside--I just couldn't do it. I know that she will remember that moment for the rest of her life. I think it's parenthood, not cancer, that has made me a softie in those situations, though.
I don't think I'm much different, and maybe I should be--maybe I shouldn't want to throw Gabe under the bus when he forgets to do laundry or I have to tell him for the millionth time to do some little chore around the house. Outside of manic exercising, which I have done for years anyway just to get some damn sleep, I haven't become a pure-living enthusiast. I've taken to having a cocktail almost every night, something I never did before cancer, maybe out of spite for all the people telling me I'm somehow killing myself in the process. I remember years ago when my boyfriend at the time gave me a birthday card, and it was a picture of a little girl crawling onto the kitchen counter to steal cookies from the jar, looking over her shoulder to see if she's going to get caught. He wrote on the inside of the card: "That's all you, Kate." And maybe it is, maybe it's always been that way with me.
If there was a poster child for breast cancer surviving, she just wouldn't look like me. And yet I feel that Maggie Daley, and others like her, gave me the gift of saying, look, just keep doing what you were doing before, don't let this cancer change you. If you were a stubborn little manic hard-ass, keep it up. It kind of angers me that we collectively assume that cancer made Maggie Daley tougher, that by watching what she went through and how she handled it, she could teach us how to behave. She could teach us how SHE behaved, show us who she was--and she gets the credit for that, not cancer. I daresay she would have been just as interesting and impressive if she had been able to live another twenty years, without cancer. She didn't have that option so she kept on doing her thing. What else can you do? That's just the way it is.
The last thing that drove me to write this was the following part of one sentence in the article I was reading: "Though much of the focus on breast cancer goes to prevention and screening..." Sweet Jesus,can people who write about breast cancer get it together? Unless you call telling women not to get fat prevention, there has been little to no focus on prevention in the breast cancer lexicon. Say it with me: MAMMOGRAMS AND BREAST EXAMS ARE NOT PREVENTATIVE, THEY ARE DETECTION TOOLS. Having the good news from a clean scan does not PREVENT you from having breast cancer, it just means you don't have breast cancer and you should be happy. Feeling a thin hard line in your lactating breast and going in right away to get it checked out, only to find you have three cancerous tumors, does not save you from what you need to do to attempt to eradicate the cancer that through some bizarre, unknown chain of events was already there for years. Perhaps if we understood more about why so many women get breast cancer, and why it turns metastatic in some cases and not others, we could do something about it and bar the proverbial cancer door.
But we don't. So those of us who have had or do have breast cancer, who are early stage or in the incurable camp, really can't sit around wondering why, because it doesn't matter and it doesn't help. We can just do like Maggie Daley did, keep doing our thing, whatever the hell that thing was. Just please give us the credit for it, or the blame, and leave cancer out of the equation. At the end of the day, after all, that's what we're trying to do--leave cancer in the background, and make of our lives something else, for as long as we can.