It Takes a Worried Man (4 page)

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 assholes 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.

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.

While I was incredibly depressed after our meeting with Maryann, Dr. J. is much more positive and upbeat. She also speaks much more clearly: while Maryann spoke in these crazy circles, listening to Dr. J. is like reading an outline. We proceed from one treatment to another, and every side effect is explained in detail, times are outlined, and I follow the whole thing from start to finish, which is three hours in one of these windowless exam rooms. It probably didn’t hurt that I don’t find Dr. J attractive at all, so I was not distracted by that as I was when we talked to Maryann.

Anyway, by the end of this, we have all but made up our mind to go with Dr. J’s patented restorative tonic, which is another joke we have about this being some kind of experimental snake oil treatment. Apparently fifteen percent of patients get a complete remission (which is not, they are quick to tell us, a cure) from the standard treatment. Dr. J says that they have been getting sixty percent of patients with a complete remission in this study. Basically the side effects are going to be horrific, but for an overall shorter period of time. The idea with this treatment is that you undergo this nightmarish ordeal for a few months and are then done. With the standard treatment, the ordeal is less nightmarish, but it’s never really over–you just basically bounce from one treatment to the next.  Dr. J tells us that some small percentage of patients are symptomatic when they do their first round of chemo, meaning that their cancer is in some way impacting their ability to live a normal life in some way other than the psychological sword of Damocles kind of way. The majority of people are symptomatic by their second round, everybody is symptomatic by their third round, and nobody gets a fourth round.

Dr. J says that she has various appointments lined up for Kirsten, but she is free to cancel them, and that she supports whatever decision we make. She also says to me that she could not do her job without thinking about being in the other chair, and she knows what she would do if she were in Kirsten’s place, and she knows exactly what the side effects look like because she treats people all the time who are going through them. That is a powerful statement, but really our minds were made up before. Who wouldn’t want to fight?

We have known Dr. J for several years because she goes to our church, and I know her to be a very good and deeply spiritual person. She once thought she wanted to be a minister, and she is certainly ministering to us right now. I feel good about having her in charge.

Soon after our epic meetings with Maryann and Dr. J, I feel this powerful need to rent living dead movies. Actually, I get this urge periodically, but every time I wave one of the movie boxes at Kirsten in the video store, she says, “No
way
are we renting that,” then proceeds to show me the box of some three-hour heartwarming tale of a Chinese peasant woman’s tenacious struggle to bring in the wheat harvest or something, which I similarly nix.

This week, though, I will not be denied.  I go to the video store and have to root around, but I eventually find what I am looking for.
Dead Alive,
which is a demented tale from New Zealand about a meek mama’s boy whose life is changed forever when his domineering mother is bitten by a Sumatran Rat Monkey and transformed into a zombie. This film features pus squirting into custard which is then consumed, a priest who says, “I kick ass for the Lord”, and an incredible climax where the aforementioned mama’s boy hacks through dozens of zombies with a lawnmower. Did I mention the evil zombie baby and the blender?

I also rent
Evil Dead 2
, which is a better-known classic involving a creepy cabin filled with flesh-eating spirits who squeal “I’ll swallow your soul!”, an eyeball which pops out of somebody’s head and into somebody else’s mouth, and a hand that turns evil and attacks its owner while it is still attached.

Kirsten has never seen either, and I insist that she do so. So we both watch both movies, and they are just as wonderful as I remember. We laugh our asses off as body parts are hacked off left and right, blood spurts, and bad acting rules.

I suppose it doesn’t take Sigmund Freud to figure out that there is something going on here about mocking death, that having a laugh as a disembodied head bites somebody in the crotch is really about trying to defy the death that waits for us all and that is currently menacing Kirsten in a way that makes me want to wallop it. Whatever the case, I find these movies immensely more comforting than anything that has those quotes on the box that say, “wise, witty, and wonderful,” “inspiring and uplifting,” or whatever.

 
There is some old episode of the old
Star Trek
where Captain Kirk , for reasons I don’t remember but that probably involved him getting freaky with some alien babe, starts moving through time at a different rate than the rest of his crew. So he is there on the Starship
Enterprise
, and he can see everybody, and they are all there, but they can’t see him because he’s moving too fast, and they appear like frozen statues to him.

I think about this episode a lot these days. I frequently feel like Captain Kirk–I can see everybody, but they can’t see me. I occupy the same space as everybody else, but we are having completely different experiences. I ride the subway with them, I see them at work, and they are worried about the paper they have due, or they are excited about a movie, or whatever–they are just concerned with the wonderful mundane shit that is everyday life. And I am sitting right next to them watching them from another reality. They may as well be frozen for all that I can relate to them. Kirk, as I remember, was kind of tortured by his experience and wanted nothing more than to be back amongst his frozen companions, moving through time at an incredibly slow rate. Of course he gets back before the last commercial. I hope I do too.

Through all of this, it is actually quite comforting to go to work. When I initially tell people, their first reaction is to ask me if I am going to take large chunks of time off. I always tell them that work is one of the few things keeping me sane at this point. I mean, while teaching is not like plumbing or something where you can say, you know, I put these pipes in and now it works, I still have much more of an illusion of control at work than I do at home. At home I always have to face what’s happening, and at work I don’t.

Not to mention the fact that Kirsten is on my health insurance, and we don’t have any kind of disability plan or family leave policy except for, you know, tons of unpaid time off, whoopdee-do. This is one of the down sides of the otherwise good experience of working in a charter school.

I had told my colleague Lisa about Kirsten’s cancer immediately, and I end up telling the other people who have their desks in our big, windowless basement room, but that’s only five of the thirty people who work here. So some people know and some people don’t, and while I tell everybody it’s not really a secret, I guess they feel awkward telling people, and so pretty soon I don’t know who knows and who doesn’t, and I get very very tired of telling the whole story over and over.   I have now taken to being kind of honest when people ask me polite questions like, “How’s it going?” and replying with, “Incredibly shitty,” and suchlike things, and I know that is an incredibly annoying trait, but there you go.

On Thursday after our meeting with Maryann but before our meeting with Dr. J, I have a department meeting, and at the end of it I cry and cry and cry, and the nice women I work with ask what they can do, and since tomorrow is a professional day, I ask if we can have our meeting off-site, with alcohol. They agree that that would be a good idea.

So Friday morning I am still reeling from our meeting with Dr. J, and what really really kills me for some reason is that this treatment is going to kill Kirsten’s ability to make blood. When I come in in the morning I end up telling somebody about this, and it just unhinges me to have to say that it’s going to kill her blood. I don’t know why–there are certainly other aspects that are just as horrible, but the thought of her getting medicine strong enough to kill her blood cells just makes me sad.

Somehow I drag my ass through this day, but it’s not easy. When I am teaching, I usually have no trouble getting through the day–there are papers to be read, poems to be discussed, and many mini-crises to be dealt with. But on a professional development day, there are no kids in the building, and, though there is work to do, there is a lot more time to think. This is bad. I get through the morning, and after lunch I am shot–just too sad to do anything.

I decide to send an email to everybody in the building basically explaining what’s going on so that everybody knows and I don’t have to have the initial conversation any more. Here it is.

From: Brendan Halpin

To: Staff

Subject: My life

Disclaimer: Depressing personal information follows. Feel free to skip it.

Many of you know some of this already, but here is the update. I am sorry to do this in an email, but I am getting kinda worn out from having the conversation so many times.

My wife, Kirsten, has stage four breast cancer. (It has taken up residence on her spine.) After tons of tests, etc., we were faced with two treatment options. Option one involves getting chemo at standard doses pretty much continuously until death or until some promising new drug comes along, whichever comes first. Three guesses as to which one usually comes first. (Eighteen months to 3 years would be her projected survival under this plan. The oncologists say, “the intent of the treatment is not curative”)

The second plan involves basically 3 rounds of chemo. Round one is a pretty normal dose. The purpose of this is to bring stem cells from her bone marrow into her blood so they can be sucked out and stuck in the fridge. They become important later.

Round  two involves three drugs given at ten times the standard dose. This involves a month-long hospitalization and tons of side effects, two of which are that her immune system and ability to make blood at all will be destroyed. Her own stem cells will be re-injected (they call this a transplant) and she will receive transfusions.

After three weeks at home, round three begins. This lasts twenty-one days and is given in the hospital on a semi-outpatient basis. That is to say, she will go to the hospital every day for treatment and stay if she, for example, spikes a fever. Most people are hospitalized about five days under this part of the treatment. She gets more of her stem cells at the end of this part.

And then, hopefully, that’s it. Sixty percent of patients get a complete remission from this treatment. This can be a short or long-lasting remission. The longest surviving patient from this study has been disease free for eight years following the treatment.

Naturally I believe that my wife will be the exceptional person who achieves a permanent victory over this disease. It is a real bummer, though, to realize that given the current state of treatment for this disease, having her for only another 10 years would be considered sort of miraculous. But there are exceptional people out there living cancer free for a long time, and I think she will be one.

Frequently asked questions:

How are you holding up?

We are doing I guess about as well as can be expected. We are both very sad and angry that this is happening. I mean, Keith Richards is walking around relatively healthy and pushing sixty. Where’s the justice? I need to be very strong and positive at home, so I may be pretty weak and feeble here. I am going to shave my head in a gesture of solidarity, so be prepared for me to look even more ridiculous in the next few weeks.

What can I do? 

Many of you have already been very helpful and supportive. I appreciate your listening and checking in. Right now I feel very strongly that I need to continue working as much as I can. When I am teaching is about the only time that this situation is not foremost in my mind, and being relatively competent in the classroom gives me the illusion that some aspect of my life, at least, is under control.

Prayers, if you are so inclined, are helpful and appreciated.

If your religion and medical status permit it, a really concrete thing people can do is to donate blood and platelets. Blood can’t be earmarked for an individual patient, but Kirsten will be needing a lot, and I feel, karmically speaking, that adding blood to the supply is a good and noble way to honor her fight against this disease.

A platelet donation is a more time-consuming process (I think it’s a couple of hours vs. thirty minutes) I have no idea if platelets can be donated in someone’s name, but I do know that platelets donated at [Jewish/Methodist Hospital] may well find their way to a woman undergoing the same treatment, or to a leukemia or other patient undergoing bone marrow or stem cell transplants.

Please feel free to ask me about stuff–I appreciate the affection and concern behind it, and I will certainly tell you if I don’t feel like talking about it. Please also feel free to not ask me about it–I know many of you have difficult stuff happening in your life too or don’t know me well enough to watch me sob. I still like talking about sports, movies, and teaching and appreciate opportunities to convince people that
Evil Dead 2
is the greatest movie of the 20th century.

How’s your daughter? 

Ok so far. We are being honest and age-appropriate with her, and she is taking it well. The tough part will be the hospitalization, because our daughter (and all her under-six playmates) will be barred from visiting because kids are lil’ germ factories who really shouldn’t be hanging around with people with no immune systems. We’ll see. The idea is to lose mom for a month in hopes of having her for many years.

What positive things are sustaining you?

We are surrounded by wonderful, loving family and friends. We feel loved, supported, and, most importantly, not alone. I feel blessed to have my wife, my child, a house of my own, and a job I love. I am happy to work with so many wonderful people. Thanks for listening.

–BH

Writing it feels kind of cathartic, and I sit and wait for the responses to roll in. I only get a couple on Friday, and the rest come on Monday. They range from expressions of concern and promises to pray to people telling me I’m brave and/or heroic, and one guy who is not a native English speaker, adds that he thinks
Evil Dead 2
is “an adorable film”. Not the first word that came to my mind when I watched it recently and guffawed as the disembodied head bites the crotch (I know I’ve mentioned it twice. It’s really really funny), but I guess I do adore the movie.

I sure don’t feel heroic, though. Or even brave. People will tell me this kind of stuff a lot, and I know they mean well, but I just think well, what are my options here? How else can I be? I don’t feel brave–I’m terrified. I don’t feel like anybody’s hero–I just get up and come to work every day, it’s not like I risk my life saving Rwandan babies from genocide or anything. People think it takes extraordinary courage to live through something like this, but I guess I don’t feel that way. What else can you do but get up every day and try to live your life? If I knew of an easier path, I would take it in a second.

After I write the email and read a couple of replies, my department and I head off-site for our “meeting”. It turns out to suck hardcore because I am just too too sad, and you know how alcohol is a great cure for sadness. I have also eaten a lot of cookies, and I feel kind of disgusting. I order a margarita at this non-Mexican restaurant, which is always a mistake, in fact ordering a margarita almost anywhere except for the one place that is renowned for the “best margaritas in town” is usually a mistake, because they usually major in sugar and minor in tequila and taste like a vile slurpee. The margarita I get appears to have failed tequila altogether, and I don’t finish it. I start to cry after a while. Not because of anything in the conversation, but just because I am sad. My friends are very kind, and I know how much it sucks to hang out with somebody who is losing it, and this is a kindness I will remember for a long time. I finally say, “I just don’t feel like I will ever feel any happiness or joy again.” I just can’t imagine how I am going to live my life like this. It’s unthinkable. I guess this is why people say I am courageous–because they can’t imagine it either, and I have to do it.