I do ramp up my alcohol consumption, but just to basically one drink a night. Except on those nights when I buy a bottle of wine, which is about once a week, and I can never seem to have less than two glasses. This is moderate drinking by almost anyone’s standards, and really not so different from my pre-diagnosis intake. Except now I need it more. On days when we are out of beer I will make sure that I have a beer in the house, even paying the exorbitant prices of the pizza shop/liquor store down the street if I have to. I am a little nervous about this, but it seems to be under control.
I am very wary of my alcohol intake. My maternal grandfather is an alcoholic, not to mention a mean, sociopathic sonofabitch. And, you know, my ethnic background is Irish. I know how much an alcoholic in the family screws up the family because most of my extended family is kind of screwed up in one way or another. This is not something I want to do to Kirsten and Rowen.
So if my drinking is under control, my eating is not. I have even more diabetes than alcoholism in my family, so I have been making an effort to lay off the sweets for quite some time. That all goes out the window. So does moderating my portion size and basically anything else involving not abusing food.
I am straining at the 34-inch waist of the pants I just bought a month ago. I have never worn more than a 33 before. I hope I don’t end up a whale, but it is hard to beat food as a source of comfort. I have been walking 45 minutes to work every day, and that is helping, but I feel myself getting sluggish and tubby. And I am not sure how to stop.
Salvation Through Electronics
As soon as this all begins, I start thinking about all of the things I can buy to make it better. “I’ll get a CD burner,” I say, “and then I can make you mix CD’s to listen to while you’re recovering from surgery and getting your chemo.”
“Do you think you might like a Game Boy? Then you can play Tetris while you get your chemo…”
“Maybe we should get a new computer so you can email everybody while you’re laid up at home.”
“I’m thinking I should get a cell phone, so you can reach me any time.” I am still smarting from the pager debacle on the day of the diagnosis.
Kirsten nixes most of this stuff, and I know deep down–no actually, I know just below the surface–that it’s pretty stupid. I just feel like if I could only buy something, I would have some kind of control. You know, you give them the money and they give you the stuff. On a fundamental level, it makes sense in a way that getting cancer when you are 32 does not. It just makes the universe seem a little less random.
Kirsten is wiser than me and doesn’t really want stuff. I keep trying, though. I scan the circulars in the Sunday paper, watching for the prices of the CD burners to go down, I scan the cell phone ads looking for a good deal, and I pretty much give up on the whole game boy idea. I just want to do something to make it better.
I decide that I will shave my head when she loses her hair. This feels like a tangible thing I can do. I am attracted by a 3-day, sixty-mile walk for breast cancer that will be taking place nearby. I look at the web site obsessively at work for about 2 days. I am put off by an article in one of my lefty magazines about how so much of the money goes to promotion, by the fact that all the pictures on the Web site are of women. This would be okay–I seem to get along with women easier than men, and walking in this thing seems like the kind of sensitive guy thing that women love, so I could probably have some nice flirtatious conversations, but all the women are in their fifties and sixties, and it just seems like spending 3 days with everybody’s mom might not be the most fun I could have. Also it costs fifty-five bucks to register.
Of course, I am already helping Kirsten, just by being there, listening to her, being positive, and getting up with Rowen when she has to pee in the middle of the night. But buying stuff is easy, and this business of being a positive support is very hard.
It Takes a Worried Man
Early into this ordeal, I buy two CDs that prove incredibly helpful. One is The Essential Johnny Cash, three CD’s worth, and the other is some British import of 25 essential Carter Family songs. The Carter Family are not Jimmy, Rosalyn, Chip and Amy, but rather Sara, A.P., and Maybelle, and these recordings from the 20′s, 30′s, and 40′s, are, in most people’s opinion, pretty much the bedrock on which country music is built.
I know what you’re thinking–corny ass fat guys in stupid hats. But the thing is that this is not like that at all. It is simple, moving, and demented. The songs are about death, jilted lovers and death, and Jesus and death. It’s very close-to-the-bone kind of stuff, and it really speaks to me during this time. You would think that I would want to listen to something a little more cheery, but Johnny Cash really ripping through the live version of “Folsom Prison Blues” is about as cheery as I can stand right now. Mostly I rely on the Carter Family singing about love, death, and Jesus. I guess this stuff just feels closer to where I am right now than anything else. I try with some of my old favorites, but the punk rock I loved as a teen doesn’t really help with this angst the way it helped me deal with my angst over why a chubby sarcastic kid with braces couldn’t get a date. (Funny, but it really was a mystery to me at the time.)
So it’s the Carter Family, asking to be buried beneath the weeping willow, or saying that it takes a worried man to sing a worried song. Nobody sings “I will survive” at the end of a love affair in this world. They kill themselves, mostly, though sometimes they kill the other person too. The whole thing is just sort of suffused with death. I guess this comes from living close to the edge. I get a book out of the library and find that A.P. and Sara literally lived in a place called Poor Valley. I guess when you are shit poor and Appalachian, you make music that doesn’t mess around with niceties. Right now I like that.
What I also like is that there is a rock-solid certainty about God’s goodness and ultimate power to make everything okay that is in marked contrast to the murderous and suicidal proceedings of the other songs and that I wish I shared. If I can’t quite bring myself to believe that everything is going to be okay, I can at least have Maybelle Carter saying, “let us trust in our savior always/who keepeth everyone in his care.”
This music is so wonderful that I wonder how its descendants, country music and folk music, came to suck so bad. How did we get from the power and weirdness of the Carter Family to Faith Hill’s lite-rock ballads and the Indigo Girls complaining about how difficult it is to be a college student?
Maybe you have to be shit poor and appalachian to make this kind of music. And maybe you have to be walking through the valley of the shadow of death to really like it.
The MRI
The Tuesday after our romantic weekend, Kirsten is scheduled for an MRI to determine what the spot on her spine is. It is at six o’clock at night, which seems kind of strange to me, but it’s also nice because the whole family gets to go. The hospital is not far from where I work. In fact, I will come to know this route really well. Three trolley stops and a five-minute walk, and I am there.
We are meeting at the hospital at 5:30, so I go to the overpriced natural foods supermarket near where I work beforehand to get an array of prepared foods. There are potato pancakes involved. Maybe it’s my ethnic heritage, but pretty much nothing says comfort to me like potatoes and oil.
Anyway, I put all of this food into my backpack and head over to the hospital. It’s cold and rainy. When I get there, I see Kirsten and Rowen in the waiting room, smiling and talking. We eat our food quickly. I eat too much. Still, it is kind of fun–it’s like a little adventure, eating dinner in this basically empty hospital foyer. We are in good spirits. I, for one, am convinced that the MRI will give us good news about the spot on her spine.
As it gets close to six, we go down to the basement, which is where the “MRI suite” is. It is a dingy little room at the end of a dingy little hallway. There are a bunch of lockers there, and there are also some toys. The only magazine they have is Modern Radiologist or some other crappy trade journal. I ha
ve no idea if this is part of a pattern of cost-cutting, or what, but there is just such a shitty magazine selection in all of these places. And it seems like the deeper you get into this process, the shittier the magazine selection gets. Kirsten’s primary care doctor’s waiting room is lavishly appointed with recent magazines. The oncology suite has like three two-year old copies of Sports Illustrated. The MRI suite has one copy of a magazine nobody wants to read. I pick it up anyway–it is a year old.
But there are the toys, and there is also a TV, so maybe I shouldn’t complain about the magazine selection. I turn on Arthur, and Rowen and I start playing some game that involves her hiding toys in lockers and me pretending to be mystified about their whereabouts. It is kind of fun.
Some lady in hospital employee clothes comes and plops down there in the waiting room. Without so much as asking, she flips the TV over to World News Tonight. I don’t really mind, because Rowen and I were not really watching the TV, but still, it seems kind of crappy that she didn’t even ask.
It soon becomes clear that this is an employee lounge, not a patient waiting room. The first woman stays for about fifteen minutes, then leaves. She never so much as looks at us or acknowledges our presence. Right after she leaves, I turn the tv back to Arthur, and then another employee comes in. He sits down, takes out the paper, and starts to read. Once Arthur ends, I ask Rowen if she wants to check out the newborn channel, but for some reason the TV keeps turning off before I get to the hospital nursery-cam channel. Finally the guy says, “Oh, what are you trying to watch?” I tell him I was trying to have a look at the babies so my daughter could see, but I’m not having any luck. “Oh, ” he says, “do you mind if I turn on the news?”
Well, it clearly is the employee break room. After all, he’s probably here every night, and with luck, we’ll never be here again. I tell him it’s ok, and it is. As I said, we weren’t watching it, and I did very much appreciate the fact that he asked.
I feel like a cup of coffee, so I convince Rowen that we should go to the cafeteria. We wend our way through several basement corridors. Hospital basements are creepy under the best of circumstances, but deserted at night–even at 7pm–they give me a serious case of the willies. Luckily Rowen is not fazed at all, and she notices a lot more than I do. “Look at the guy on the door! He has a smiley face!” Someone has graffitied a smiley face on the male icon on the men’s room door. “Look at the pretty pipes! They’re so colorful!” Some exposed pipes above our head have been painted a rainbow of bright colors.
We get to the cafeteria, which at least has windows, and it is deserted. This makes no sense to me at all. It’s only seven o’clock, and the hospital is always open. Where is everybody? I don’t know, but I get my coffee and Rowen gets some cheesy popcorn, and we sit next to the window having our snacks and watching the cars go by in the rain outside. It is always nice to be inside drinking a hot beverage on a cold rainy night, but, more than that, at the risk of getting pukey, even in a dismal hospital basement, even with the most important woman in both our lives down some hallway lying in a cold machine, it is calming, comforting, and wonderful for me to just sit here in Rowen’s company.
Maryann
Two days after the MRI, we have our big meeting with Maryann, Kirsten’s oncologist. Somewhere in there she has the PET scan–I guess that happens the day after the MRI. I didn’t go, so I don’t really remember. Anyway, I leave school early and hit the trolley, three stops, then walk 5 minutes to the hospital. I stop at the Starbucks in the lobby and get a small something. The counter person looks at me funny when I ask for a small coffee, but I just can’t bring myself to call it tall or grande or double petite or whatever the hell they want me to call a small coffee.
I take my coffee upstairs to the cancer floor. We sit in the waiting room. We make some jokes, because that’s what we do, but we are both nervous. I look down at the field hockey players across the street. There is a small women’s college down there , and they have their soccer and field hockey teams out. It looks like it’s just practice. In fact, the field hockey players are looking really pathetic–bad passing, bad shooting–we figure they must be the JV.
Maryann eventually comes out. You can tell this is a serious appointment because she is only fifteen minutes late. She takes us back to an examining room and tells us that Kirsten has stage four cancer. She says she is saddened, but not surprised by the PET scan and MRI that show the spots (first they told us there was one–now it turns out there are seven) on her spine to be cancerous.
Now, I haven’t been doing any research on cancer or anything, but even I know that stage four is fucking terrible news. I was somehow feeling optimistic after my long conversation with Maryann on the phone when she told me if this news came that it was bad but fightable.
Well, apparently Maryann has a pretty strange definition of fightable. She talks in averages, which don’t really mean anything, but I hear things like “eighteen months.” and “three years.” I am pretty sure that three years is how long she might expect to live with treatment. Maryann says things about HER-2 neu receptors, Herceptin, and the fact that promising treatments are in the pipeline. Fuck the pipeline. What the hell do you mean, three years? She’s not even sick.
She also tells us about the “aggressive” treatment. This involves high doses, like ten times the standard doses, of chemotherapy, which completely destroy your immune system, so they have to suck out your immune-making cells beforehand, and they freeze them and re-inject them after. There are all kinds of heinous side effects in addition to the immune system destruction. Maryann says that one of the fun things about getting your immune system destroyed is that you have to spend a month in the hospital, and no children under six are allowed to visit, because, you know, they are little germ factories.
This is hard to take. Rowen is very attached to Kirsten. I mean, well, duh, but Kirsten is definitely still the number one parent. Rowen and I have nice times together, but she prefers Kirsten. I can’t imagine what she’s going to be like if she can’t see her mom for a month. Not to mention how is Kirsten going to fight for her life and try to keep her will to live through horrible nausea, which saps your will to live pretty quickly, as every drunken college student hunched over a toilet this weekend could probably tell you, without Rowen there to encourage her with hugs and drawings and stuff? This really sucks.
I say something like, “well, I suppose it would be worth it to have her in the hospital for a month and to have worse side effects if we could have her for another ten years.” I am quoting, remember, a number of years that I swear Maryann told me Kirsten could have if she was Louis Armstrong or Tiger Woods or Yo-Yo Ma.
And Maryann looks at me and says, “I can’t talk about ten years.” What do you mean, you can’t talk about ten years? You mean it’s hopeless? You mean I’m going to be widowed by the time I’m forty-two? How can you possibly be telling me this? How can this be true? It’s barely even out of her breast, two tiny spots on her spine and you’re telling me some bullshit about three years? You can’t talk about ten years? Well I can talk about ten years, goddammit. I can talk about fifteen or twenty. Right? Where the fuck does she get off telling me I can’t have Kirsten forever?
Maryann talks and talks and talks but I pretty much stop hearing her. She talks in circles: she will talk about treatment option A, then option B, then B some more with an aside about A, then back to A with an aside about B, and after an hour it becomes impossible to follow her. I do remember her saying, though, that this aggressive treatment is very controversial in the breast cancer world, and lots of people, including every other hospital in town, think it is basically quackery and akin to throwing a pig off the roof to teach it to fly–doesn’t work and it’s cruel to the pig. I swear she says this. And Kirsten is the pig.
Well, I can no longer absorb what Maryann is talking about, so I just kind of look at her and think about how she’s a very attractive woman. Yes, if you needed further confirmation that men are asshole
s and that I am one of them, I swear I sat there thinking about how foxy my wife’s oncologist was.
Pretty damn foxy, in case you were wondering.
Dr. J
The day after our meeting with Maryann, we go back for a meeting with Dr. J, who runs the “aggressive” treatment program. Her name is Joan, but we call her Dr. J because, you know, she is this short white lady and looks nothing like Julius Erving. What can I say, it’s funny to us.
Anyway, Dr. J. is scheduled to leave the country tomorrow, but she kind of sneaks in to the cancer floor just to see us. I once again have to leave work early, take the trolley and walk five minutes. I have spent much of the time I should have spent correcting papers and preparing for my classes looking at stuff on the Internet about bone marrow transplants for breast cancer, and the stuff I have found is sort of semi-reassuring. I read some article from like 1987 by Stephen Jay Gould about how he got diagnosed with some wacky cancer that they told him the average patient lived eight months from diagnosis, but he did all this research and, being a scientist, understood something about statistics, which is more than most of the people I know who ever took a statistics class, and he figured the average didn’t mean squat when it came to him, and he is still alive, so I guess he was right. I also found an infamous study that showed that there is no benefit at all in the survival time from this treatment. Then there was some other thing I no longer remember that they did with five people in France, and the results were preliminary but encouraging. Or something.
At any rate, they are still acting like we have a choice here between the standard and the aggressive treatment, but the nomenclature alone gives it away. Faced with something that could kill you, do you want to take it in a standard way, or do you want to go after it aggressively? Well, who’s going to reject aggressive? It seems like the path of hope.
It Takes a Worried Man Page 3