Welcome!

My last short fiction instructor told us not to write about cancer. "It's been done," she said. Well, the hell with that. I learned in the last three weeks that I have stage III breast cancer. Writing, painting, and assorted other arts are how I process stuff, in addition, of course, to long conversations with friends. These conversations have begun in earnest these recent days, but I realized my Facebook page in particular was in danger of becoming a medical-update site. I do not want that. My life is still going to be about more than cancer, as much as that may not seem possible right now. Also, I don't want to alienate friends who are not ready to walk this particular valley with me at this time. For example, one elderly friend who called to cheer me up this week can't even handle the "c-word," and there is no way she will be up for any truly frank discussion of what's about to happen here. So she is advised to keep in touch with me via Facebook. People who are comfortable with the c-word, honest discussion and occasional cursing are welcome to join me here.

Thursday, January 26, 2012

"Fighting" cancer "bravely"

                Whenever anyone famous dies of cancer, it seems to me, there is always a headline or a newsreader who says the person “lost their battle with cancer” or died “after a brave battle with cancer.” This week, I saw at least one such headline on a news website about Joe Paterno, who died of lung cancer at the age of 85. Some days this type of battle metaphor for having cancer truly rubs me the wrong way. I am certainly not the first person to have this type of annoyance reaction. My daughter tells me that this very topic came up in a novel she just finished reading. But this week, the cancer-related battle language was annoying me so badly that I had to sit down and think about why it bugged me so much.

                Granted, there are times when the “warfare” language seems appropriate. Having cancer, at least the kind I’ve got, and the treatments that go with it, is a physical endurance challenge of a depth I’ve never experienced before. Maybe it is like warfare. I’ve never been in the military. I’ve never trained for a marathon or a prizefight. The only thing I can liken it to, from my own experience, is pregnancy.  I’ve been nine months pregnant. I’ve given birth. I would put the physical exertion of having cancer in that range of magnitude.

Maybe fighting in a war is like that. Or maybe fighting in a war is much worse. I would like to talk with a war veteran about this. I can see parallels. For sure, there is survivor guilt when you have had cancer and then you are told you are in remission, and you know there are friends of yours who aren’t. I am sure there are other psychological parallels, including post-traumatic stress disorder. (Also, I would like to ask if using too much of the “warfare” language for cancer annoys military veterans, for other reasons? Perhaps it cheapens the language for them?)

I’ve certainly used the warfare language right here in this blog. I’ve talked about tracking down cancer cells the way we’d like to track down Al Qaeda terrorists. I’ve told myself how “tough” I am. Thinking of myself as a tough little Montanan helped me get through chemo. I loved it when a friend nicknamed me “Captain Badass.” At my remission party, my daughter wore a pink shirt that read, “MY MOM KICKED CANCER’S ASS.”  Battle language, all of this.

My daughter enjoyed that shirt, and it was a proper moment for giddiness and celebration. But in the back of my mind, I doubted whether cancer felt as if its ass had been kicked.

Recently, at a cocktail party, a friend introduced me to someone as his “hero.” This made me very uncomfortable. Hero?  I hadn’t pulled anyone out of a burning house, or run through a firefight to save a platoon mate. I hadn’t even chosen the “fight.” It chose me. All I had done was not die yet. Okay, I have also tried to be honest and not whine a lot. I don’t think that staying alive and not whining a lot measure up to the criteria of “heroism.” I am not sure what he means by “hero.”

Is everyone who has cancer automatically “brave” and a “fighter?” Or do we just get credit for bravery because we happen to be in a situation that sucks? Or are we truly making some sort of distinction, here, when we say someone is fighting cancer “bravely,” and what we really mean is just that they aren’t whining a lot?

Several months ago, after I was first diagnosed with cancer, I crossed paths with a friend, who also has cancer. He had not seen me since my diagnosis. He gave me a big bear hug and said, “But we’re warriors, aren’t we?  We’re fighters, aren’t we?” and I hesitated. I was considering whether he and I are any more “fighters” than the next person with cancer is. He looked at me anxiously, wondering where my resolve had gone to, and I stammered that, just the day before, I had been called a “warrior princess.” He seemed comforted by that.

Here is my first big quibble with the military language:  If my friend and I are “fighters,” does that mean some people aren’t?  I have known a bunch of people with all different types of rotten cancer. Each of them was a fighter in their own way. Each of them tried, to the best of his or her ability, to stay alive.  I can’t think of a single person who just threw in the towel. But a bunch of them died anyway.

One reason I hate the warfare metaphor is that it encourages the idea that if only a person “fights” harder, more “bravely,” they won’t die. This is a lie. I know folks who were plenty brave who died anyway. I know people who absolutely used themselves up trying not to die, and they died anyway. Were they failures? Lousy soldiers?

A niece of a friend of mine died this summer of breast cancer. She was in her thirties. She left two preschool-aged children. She didn’t live near here, but I read her blog until I couldn’t bear to read it any more. Nobody I know wanted to be alive more than she did, because of her kids. Nobody I’ve ever heard of had more faith; she expected a miracle almost until the week she died. Nobody was braver. She went through treatments I don’t think I would have agreed to, trying to earn more time. All that, and she died anyway. Did she somehow fail? Come up short in the effort department, or in not wanting it enough? Surely not.

There’s a fallacy you often see in badly written TV shows on the Disney channel and such places. In these shows, children hear that they can be anything they want to be, if they want it badly enough and believe it hard enough.

Unfortunately, that’s not true.

It’s not true with cancer, either. And criticizing some cancer patients for not “fighting hard enough” strikes me as nonsense, except in unusual circumstances. It is the worst sort of blaming the victim. It really gets on my nerves when I see it in the news.

Another thing: having a “battle” implies there is someone on the other side you are battling with. But we aren’t talking about an evil force here, a demon or a malignant being. We are just talking about some of my own stupid cells dividing too fast. It’s like saying a diabetic person is having an argument with their pancreas. It’s silly, when you think about it.

In his novel, Little Big Man, Thomas Berger writes of a Cheyenne village that had been infected with cholera. “Those that wasn’t yet dying,” the narrator recalled, “got into battle dress, mounted their war ponies and challenged the invisible disease to come out and fight like a man.”

This image moves me. It seems so tragically misguided. But we do it all the time when we personify, or monsterify, cancer. I would have loved to challenge cancer to come out and fight like a man. After all, my kids wanted to see me kick its ass. That would have been pretty satisfying. But we’re only really talking about one of my own cellular-level bodily processes here, so the metaphor doesn’t really work, does it?

And then there’s a related problem: The idea of dying as “losing” a battle implies that somebody, somewhere, wins, or at least that winning is possible. But, in this life, every single one of us dies in the end. Nobody wins, ultimately. Nobody is supposed to.  Nobody has ever been so good at living that they didn’t die. Dying is part of the package. Dying is not failure at living. It’s just who we are. Battle language, on the other hand, implies there’s a winner. You win a war, or you lose it, or you draw, but it never just “is.”

And theoretically, on the field of military battle, most soldiers will make it through alive. There is some skill involved. Preparedness and hard work do count. That’s why soldiers train so hard: so they won’t die. And some of the soldiers who die do so because they or somebody else didn’t do their job well, because somebody was stupid, or careless, or cowardly.

It seems to me that dying of cancer in America these days usually isn’t like that. I am sure there are exceptions, when a doctor screws up or a patient ignores doctors’ orders. The skill of doctors and nurses, of course, makes a huge difference. And patients can manage their risks to the best of their ability, eat the right things and get the right amounts of exercise and sleep and take their meds properly. But a lot of those patients will die anyway. Usually, there is not a big medical screw-up or a failure of the patient to do what they’re told. Sometimes, you know, it is just not possible to live through cancer. Human bodies are inherently fragile and temporary. Death isn’t a moral failure. Maybe it’s a design flaw.

The problems of language surrounding death and cancer are part of our culture’s whole discomfort with the idea of death. We don’t accept it. We don’t plan for it well, some of us, anyway. We ignore it. We don’t talk about it well. Our rituals for dealing with it are not always the most satisfying. And we don’t like the randomness of illness and death. Wouldn’t it be nice if disciplined, “brave” people could fight off illness and death? We could then protect ourselves by just having a good attitude. If people died we would know why. It would be less random and less scary if we could demonstrate that it was your own fault if you died of cancer.

I suspect other cultures may handle the subject of death better than we do.

An illustration of what I mean can again be found in the novel Little Big Man, by Thomas Berger. The novel is the story of a white boy who was adopted by a Cheyenne man in the mid-1800s. At one point, there is going to be a battle between the Cheyenne and the whites, and the adoptive father takes his son aside and gives him a chance to excuse himself honorably from the fight, if he feels it is the wrong thing for him to be involved. The boy responds, “I think it is a good day to die.”

And explaining this statement, the narrator says,

“You tell that to an Indian, and he don’t immediately begin soothing you or telling you you’re wrong, that everything’s going to be swell, etc., for it ain’t the hollow speech it would be among whites. Nor is it suicidal, like somebody who takes the attitude that life has gone stale for him, so he’s going to throw it over. What it means is you will fight until you’re all used up. Far from being sour, life is so sweet you will live it to the hilt and be consumed by it.”

In that culture, death isn’t considered a personal failure, or unspeakably bad, or even the worst possible thing that could happen.

                If we in modern America could accept death as an inevitable part of life, not a moral failure or the worst thing in the world, it would have implications for day-to-day life. For a person like me, with cancer, it would have implications for questions such as when certain treatments might be not worth the damage to one’s quality of life, or when assisted suicide might be morally acceptable. Right now, it’s hard to even have those conversations; even the words we use, such as “assisted suicide,” are already loaded with so much baggage that we’d almost have to start from scratch, choosing a whole new set of terms that don’t come pre-filled with negative connotations. Is it still “suicide,” for example, if you are already dying?

                It would also have implications for how we talk to each other about death. I have friends who have been amazed that I would say out loud that I had thought I might be dying, and also that I would say this in front of my children. Mind you, I had already been so visibly sick that my children had begun wondering, for themselves, if I was dying. So to me, talking about it didn’t make the situation worse, and it potentially made it a lot better. But to some of my friends, talking about the possibility of dying was the worst thing I could do, short of dying itself. I was (very nicely) chastised by one person for saying I might not survive this illness. She seemed to think I was either being “negative” or melodramatic. I was merely trying to be honest. In any case, if it is this hard for us to even talk to each other about the possibility of approaching death—how do we figure out how to help each other through it, or ask for that help, if we can’t even say the words?

                So, friends: if I die of cancer, and if the death notice in the paper says she “Lost her battle with cancer,” I want you all to complain to the editor. And I don’t want anyone at my funeral saying, “She fought bravely.” Because really, who doesn’t?


Saturday, January 14, 2012

More biopsy results, all good

                I received more good news on the cancer front this week, but not the breast cancer front. Because you really never can have too many kinds of cancer, it has turned out that I also have to be very careful about skin cancer. I’ve known this for years; I started having problems in this area when I was pregnant with Julia. I had Mohs surgery just after Matthew was born. They’re always finding a bad mole or something sketchy going on with my skin.
                I don’t know why. A misspent youth on the Blackfoot River, in the sun?  Those two weeks in Spain that one time? Our honeymoon on the beach at Langebaan? A complete lack of interest in sunscreen way back in the Dark Ages, when I was a kid? Probably all of the above, or I just have a rogue gene somewhere telling my immune system to slack off.  I grew up thinking I was a brown-eyed person who got sunburned once each year, at the beginning of summer, and then was nice and brown until fall. But I’ve learned I am actually a green-eyed person (at the brown end of the green-eyed spectrum) who should have been as careful as a redhead all along.
                But we are staying on top of it. And now that I am a breast cancer survivor, the dermatologist is really being thoughtful. When he biopsies something these days, they call me back right away to let me know what’s up. They know I’m a little paranoid about cancer right now.
                I can happily report that the thingy they took off my face before Christmas turned out to be a pre-cancerous thingy, but hey, they took it off, so it’s all good. And the ugly mole they took off a few days ago was just an ugly mole. Too much information?  Sorry! But I’m still cancer-free!
                The one thing that surprised me about this experience was how very awkward I felt this time while getting my regular head-to-toe check from the dermatologist. I had no idea I would react this way. This doctor has seen every inch of me, many times. But it was really hard letting him and the nurse see the half-finished robo-boob. I felt like I should warn them or something, “Hey, it looks really strange at this point, brace yourself. It’ll look better a year from now.” And I know the doctor has gone through medical school and he’s known me for 15 years and he knows my whole cancer story, and I’m sure he’s seen worse, so why did I care? But it was a deep, primal thing, more like shame, which is weird, considering I haven’t done anything wrong. I wanted to cry. It’s a good thing I don’t have to go to singles bars these days, because that would be seriously damn awkward. I feel for the younger women out there who are going through this. It’s more complicated than I had appreciated.

Tuesday, January 10, 2012

So, ten months in, what has changed?

I belong to a United Methodist congregation, Mill Creek Parish UMC in Derwood, Maryland. Our church has a group called “God and Guinness,” which is really just a bunch of us who enjoy getting together, and we meet twice a month at a brew pub in Gaithersburg to have dinner. We usually have a topic in advance to start the conversation rolling, although we often wander far away from the topic and nobody minds. Sometimes, we never get around to discussing the topic at all.

Last night was God and Guinness night, and about six of us were there. The official topic, suggested by our pastor, Rick, and announced on our Facebook page, was, “What do you want to carry with you into the New Year? What do you want to leave behind? What positive changes did you make in 2011 that you want to build upon in 2012?”

                We sat around for a while and ordered food and drinks. Our waiter, Jay, who knows most of us by now (or at least, knows our regular drink orders) brought out the sweet potato fries. I had an Irish coffee in front of me. We talked about music and football and other things for a while, and then somebody said, “How about our topic of the day?”

 And everyone there, all friends of mine who know my year was filled with cancer treatments, looked at me. One of them said something along the lines of, “You’ve got us topped in the ‘What do you want to leave behind’ department. Anything you want to say?”

                I laughed, and I said, sure, let’s leave chemo behind. That pretty much sucked. And radiation, too.  And being afraid of dying is no fun, and having your children terrified that you’re dying is awful. And I’m bald and have one boob and scars on my arms and hands, and my fingernails are trashed and all that.

                Everyone agreed wholeheartedly that I should leave all that behind. But they were, I think, a little surprised when I said there was a bright side, as well. I did not explain it well, but here is what I would have said if I had thought it through a little better:

                Strengths to build on in 2012:

#1.  I am alive.  Yes, I am still here.  I have time and I’m feeling great nowadays. What am I going to do about it? I’m going to do something other than be a housewife and child chauffeur, that is for damn sure. But what?

 Still figuring that out.

                #2. Almost dying, but not dying, gives you a certain clarity and focus. You figure out that some things (family, friends) are important. Others (television, bickering, lots of other things) are pretty much a waste of time. Similarly, you discover which people are truly your friends. You discover what you truly love to do. Me, I have started writing again, for the first time in years. For me, this is huge. I have been painting and drawing a lot, too.

                #3. Physical and sensual things are great. As the immortal Warren Zevon put it when he was dying of cancer, I am enjoying every sandwich. A good drink tastes really good these days. Music is really something. Sex is awesome. I feel as sexy as I ever have. I know this is counterintuitive. For God’s sake, I am a 49-year-old bald woman with one boob.  But I feel like I have finally gotten hold of a secret that my friend, Michelle, knew back in the tenth grade or maybe before. She was obese, and she had her share of health and family issues, but she was one of the sexiest people I ever knew. Why? Because she felt sexy, and she enjoyed the hell out of every minute. Men could tell that. Why did I take so long to learn that secret? It’s all in your head.

                #4. It’s time to take care of myself, and I’m doing it, and it feels good. The doctors all told me that if I wanted to minimize the chance that the cancer comes back, I have to lose weight, get lots of exercise, and not drink much alcohol. So I am trying to do those things.  It’s going okay. I have lost some weight and am working on losing the rest. I am trying not to drink very much. And I am exercising a lot.

 I have a trainer now, a woman called Mija, who is not what you would call mean, but she is relentless. She almost made me cry at the gym yesterday, just trying to stretch one of my hamstrings to a normal length. Anyway, it’s not fun working out with Mija, but I feel really good when it is over. My body parts all feel connected to each other again. And I was able to do 60 minutes on an elliptical trainer yesterday, at a good clip, whereas just a few weeks ago I couldn’t jog one mile. Physically, I now feel better than I did before I found out I was sick. Who would have expected that, ten months after diagnosis?  Not me.

 All this is what I would have told my friends at God & Guinness if I had organized my thoughts well. As it happens, I didn’t organize my thoughts well, and what I ended up telling them was a sort of disjointed story about a weird lady my family and I met at the Borders book store going-out-of-business sale in Germantown.

This happened back in July. I was at the end of my chemo treatments and was feeling absolutely crappy. Eating anything was like chewing on flavorless rubber cement. I survived on ice cream and milk shakes for a time, but got to the point where my sense of taste was completely gone. I couldn’t tell what flavor of ice cream I was eating, or for that matter, whether it was cold. I had diarrhea much of the time. I was getting nasty migraines. I was not sleeping well, and I was completely exhausted. Some days, the medications left me pretty stoned.

Just then, the Borders chain went bust, and a big sale started at our local bookstore. All my kids had Borders gift cards they had been given in the past year, and we had to use them before they became worthless, so we headed to Germantown to the big sale.

If the store had regularly been as full of people as it was that night,  it would never have gone out of business. The place was a mess. People were everywhere. The check-out line snaked to the back of the building. All my kids went their separate ways. I looked around a bit, and found a couple of things I wanted, but I did not have the energy to shop much. I just found a quiet spot in one aisle and slumped to the floor and started reading.

A woman approached me; she looked fairly normal and a little bit harassed, like everyone else in the store. I noticed her long hair with a twinge of jealously; I was bald as a billiard ball.

“I see your pink hat there,” she said in almost an accusing way, as if I’d been trying to hide it. “Are you having chemotherapy for breast cancer?”

I did not know her from Adam, and she was certainly cutting right to the chase, but I had learned through interactions at the grocery store and around town that that wasn’t so unusual. Total strangers would stop me and offer a little pep talk or occasionally, a hug.

“Yep,” I said. “Almost done with chemo.  Next month, I’ll be having a mastectomy.”

“Well, that was me, six years ago,” she said, with a strange intensity. She was looking almost through me, and my two oldest kids came up to see if everything was okay. They hung around for a moment and satisfied themselves that the woman was harmless, and drifted away again.

“You know,” she says, “cancer was the best thing that ever happened to me.”

“I’ve heard people say that,” I said. “But I really, really don’t get it. You are going to have to explain to me why you see it that way.”

“Well, you’re still feeling pretty awful, aren’t you?” she asked, stating the obvious. I was red and puffy, and hungry and nauseous simultaneously. I was sitting on the floor because I didn’t have the energy to stand up any more. I was totally bald. I didn’t even have any eyelashes.

 “Wait until six years from now. You’ll feel great.”

She said this with some authority and conviction. Mind, she hadn’t asked me what my prognosis was, or how it was going, or whether I expected to be around six years from now. How the hell did she know I was going to feel great someday?

“You’ll see,” she continued. “I don’t sweat the small stuff anymore. I don’t freak out, say, if I get the flu. Now it’s like, I lived through chemo. Flu is nothing.

“I know who my real friends are. I know what’s important and what’s not.”

My eight-year-old, Matthew, came up, wanting to know when we’d be done and what was for dinner. I said we’d probably eat at the Applebee’s across the parking lot, whenever we got through the checkout line. The older ones appeared, too, with their stacks of books.

“You’ll see,” the woman said. “It’s changed my life. You’ll see. Anyway, I’ll see you here again sometime. I know what your hat looks like, now.”

I thought that was an odd thing to say, given that the book store was closing forever, and I probably would not see anyone there again. But again, she spoke with conviction and authority, and I found myself wondering who this person was.

She wandered off, and we got in the checkout line. About five minutes later, the woman came rushing up to us again. She was holding a framed poster with a photo of Albert Einstein.

“Here,” she said, “look at this. This is what I was trying to say, sort of.”

The words on the poster read, “There are two ways to live: you can live as if nothing is a miracle, or you can live as if everything is a miracle.”

“That was what I was trying to say,” she said. “You’ll see. Everything is a miracle now.”

She made her good-byes again, and left.

 “Who was that?” my daughter asked. “She was weird.

“I have no idea,” I said. “She was talking to me like she knows me, like she’d seen the future. MY future.”

“That’s what I mean, she was weird!” my daughter said.

Maybe I was too sick, or too messed up. My brain hurt.

“I don’t know,” I said. “I don’t know. She is the first person I’ve ever met that I wondered, am I talking to an angel, and I don’t know?”


Me and my kids in Seattle at Christmas