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.
I Love the Dead
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.
Cold Kirkin’
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.
Work
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 gettin
g 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.
The Hose
It is time for Kirsten to get
her hose put in. This is something Dr. J told us about. Basically they will be pumping so much stuff into her veins and removing so much blood that it is just easier for everybody to have this two way hose hanging out of her instead of searching for a vein to jab an IV in every time. Her mom stays over so she can take Rowen to preschool in the morning, and Kirsten and I head over to the day surgery unit at the hospital.
Now, this particular hospital is the product of a recent merger, and one “campus” is the old Jewish hospital, and the other “campus” is the old Methodist hospital. And I do not presume to make any sorts of sweeping religious judgments by this, but everything on the Methodist side is just a little older and shabbier. The dingy MRI suite and subterranean cafeteria are on the Methodist side, while the gleaming oncology suite with the bird’s-eye view of bad field hockey games is on the Jewish side. Before you leap to the “Jews with money” conclusion that, if you’re honest, you know is on the tip of your mind right now, I should tell you that the whole beautiful building that houses the oncology suite is currently up for sale and this hospital as a whole seems to be in financial trouble. Here’s hoping they stay open long enough to cure Kirsten.
Anyway, we get to the day surgery wing at the shabby Methodist campus. It is six-thirty in the morning. There are a couple of old people in the waiting room. And this waiting room makes the MRI suite look like the halls of Valhalla. First of all, it is about the size of a gas station men’s room. While it is significantly cleaner than a gas station bathroom, but it has significantly worse reading material. At least in a gas station bathroom you can usually read some witticisms about people rolling their shit in little balls, or a big marijuana leaf with “SMOKE POT” emblazoned on it, or times and numbers for rendezvous for furtive homosexual activity, but here there is nothing. They taunt us with an empty magazine rack. This fits the pattern I have noticed of the more serious places having worse reading material, but it worries me a little. We are not yet to the most serious phase of this treatment, and already we are at zero for reading material. I don’t know what the negative side of the magazine graph looks like. Do you have to give the nurse a magazine in order to be allowed to wait in the most serious places? I guess we will find out.
It Takes a Worried Man Page 4