The Waiting
Kirsten’s time in the hospital passes pretty uneventfully, and after the puke disaster, I am able to take care of Rowen by myself for an entire week until she comes home. A few good things start happening: one is that Kirsten is starting to get peach fuzz on her head. The first time I notice this, she is in the hospital and pumped full of morphine and not in the greatest shape, but it makes me feel really hopeful. It is weird hair, though–really soft, literally like peach fuzz, and not at all like the hard stubble that portends real hair growth. I am not sure if it will fall out and make way for real stubble or what. I am also not sure, but I think it’s no longer red but, rather, white.
God, or whoever controls the weather, is nice enough to give us a snow day on the day Kirsten is scheduled to be released. This means I get to go pick her up, and this is really nice. Kirsten’s mom then stays with us for a few days, and this turns out to be pretty nice and basically devoid of tension.
I start playing puzzle games on the PlayStation. In some way I think this signals that my brain is returning from vacation.
The kids come back into the building at work, and I remember once again why I love my job. Two weeks with no kids is really too long to keep a bunch of teachers cooped up together. By the end we were all worked up about the animal farm business as well as other stupid petty crap, and people were snapping at each other in meetings, and my conclusion from all this is that I am not the only one who prefers the company of teenagers to adults during the work day. And, if I am honest, I guess I have to say that most of us also prefer being the center of attention all day, which gets difficult in meetings, so we take turns speechifying and/or having tantrums just to make sure we get a piece of that spotlight we usually have all day long and crave to an unseemly degree.
And so now Kirsten is home, and once again she is tired and mostly stays on the couch, but she makes incremental improvements, and I know that she will be her old self in a matter of weeks.
Perversely, this sends me into an emotional tailspin. I become completely grumpy, and my grumpiness is relieved only by teaching, and occasionally by spending time with Rowen. (I have to say that while picking her up from school is usually really nice, and I am able to forget everything while she trudges up the side of a snowbank shouting, “I have to climb the mountain of mange!”,taking her to school is not exactly the idyllic bonding experience I thought it would be and is actually kind of a pain in the ass because you just can’t get a four year old to get hip to the idea of a tight schedule. The one day we make it out of the house kind of early and I am encouraged about the time, she begins shuffling along the sidewalk [like Tim Conway when he played the old guy who always frustrated Harvey Korman's impatient customer on The Carol Burnett Show] because she is afraid that walking at a normal speed will cause her shoes to come untied. I end up carrying her, which does horrible things to my back for three days.)
The immediate crisis of treatment and hospitalization is over, and in some ways, crisis mode is a little easier because there is no time to think. Get up, get Rowen to school, go to work, go to the hospital, pay way too much for coffee, visit with Kirsten, come back to work, pick Rowen up, make dinner, put Rowen to bed, watch something inane on TV for twenty minutes, and collapse into bed. Now that that frantic pace has subsided, I once again have time to think, and I hate thinking. What if, what if, what if. I am relieved that treatment is over, but what if she really is going to need more? What if that becomes our life? What if this disease takes her away from me soon? Whatever happens, how are we supposed to live?
I have no idea, and I am sort of depressed that I don’t feel like I’ve been transformed by this experience at all. I haven’t had any great spiritual revelation, I haven’t learned to live each day and take it as it comes, I have not found any peace or serenity. Sometimes when Rowen is having a tantrum she will say, “I hate everything! I want to smash the whole world!” This is kind of how I feel all the time now. I guess I should be praying or meditating or something, in fact I think that’s what I need to do to try to figure out how to live, but it just sounds so fucking boring. Right now I am feeling much too nihilistic for spiritual contemplation–I feel like I’d much rather go on a three-day bender and go get drunk with strippers or something.
I’m sure most strippers are really stimulating conversationalists, and probably adore short, grumpy high school teachers with big guts, so this is probably an excellent plan. I’ll see you in three days.
The fact is that I just don’t know how to live anymore. Even if we get good news when we get news about this treatment. SourceURL:file://localhost/Users/soggyclover/Documents/B’s%20Writing/ITAWM/Page%20211A.doc
I ask Kirsten when her next appointment is one day, and she says, “I have no idea. Dr. J. is in fucking Africa.”
“Is she at some sort of conference or something?” (This has happened before—one of the downsides of having a hotshot doc.)
“No. She’s on safari!”
“Is it a surfin’ safari?”
“I don’t think they do much surfin’ in Kenya. I think it’s one of those photo safaris.”
“But they might do some, right? I mean, you don’t know that it’s not a surfin’ safari.”
“Yes,” she says finally, rolling her eyes so as to show it’s just easier to give in, “It’s a surfin’ safari.”
So whenever Dr. J gets back from her surfin’ safari, we’ll find out how the treatment worked. And then what? Kirsten’s death will always be hanging over us, and this makes it much harder for me to ignore the fact that my death, and the death of everyone I care about, is inevitable and could strike at any time. How the hell do you live like this?
I guess you just do what the people in the blue johnnies over on the bubble floor do. You just get up every day and do it, and you try like hell not to think about it too much. My experience in crisis mode confirms this. Life is easy when you just get up and do it every day. It is the waiting and worrying that makes it hard. Robert Burns “To a Mouse”, which is famous for that line about the best laid plans of mice and men oft going agley, not awry, you can look it up, ends with him saying to the mouse, yeah, you know, I wrecked your house with the plow and I’m sorry, but you still have it better than me because you can just live in the moment, whereas “forward I can guess–an’ fear!”
But then, mice get squashed or eat poison and rarely get to attend their grandchildren’s weddings. And sometimes, if “Froggy went a-Courtin’” is to be believed, they marry outside the species anyway. I have no idea where I’m going with this. To bed, I guess.
What I’ve Learned
I was feeling bad about the fact that after going through a life-changing trauma, I don’t feel that I have learned anything, so I decided to list everything I’ve learned in the last five months. Here goes:
I eat too much.
I have four alcoholic cousins. The disease carries on, and I need to be very careful in this area.
In a crisis, people will surprise you with their amazing kindness. This is particularly true of people you don’t know especially well and are not related to. I mean, someone I work with who I have had lots of conflicts with(he’s one of the people my smart, trouble-making advisees can’t stop mouthing off to) went and spent two hours donating platelets for Kirsten. What did I ever do to deserve this kindness from him?
In a crisis, people will get on your nerves. I have given numerous examples of this, but it was driven home to me as my mom recounted stories of her and her siblings all biting each other’s heads off around every stupid little detail of their father’s funeral.
Coffee is a wonderful gift from God. Really. Getting coffee when I went to visit Kirsten in the hospital made it semi-festive, and going to get coffee (for me, and a bagel for her) has been a nice excuse for Rowen and I to get out of the house and just be somewhere else. When I saw dying people’s friends and relatives in the bubble ward, they would inevitably be clutching cups of coffee or else sending somebod
y to go get cups of coffee. It is just a wonderful source of comfort.
I am at my best as a parent when we are out of the house. I don’t know why this is, but Rowen and I have a great time going to the coffee shop, or the grocery store, or wherever. It is effortless fun, whereas if we are stuck in the house on a rainy day or whatever, I have no idea how to entertain her. I am in awe of people like our friend Jen who, given about ten seconds and two glue sticks, can come up with an art or craft project that will entertain a kid for an hour.
Today’s youth don’t, despite what I said earlier, relish the impossibility of today’s video games–they cheat. The games, I have learned, are written with these built-in codes, freely available on the internet, that allow you to have infinite lives, or disable all opponents, or whatever. There’s also an actual device you can buy that will save you from the tedium of figuring out the game and the tedium of looking for cheat codes on the internet and just automatically cheat for you. Maybe they should just make the games easier.
Exile on Main Street, despite what I said earlier, is as good as everybody says it is.
Though this is counterintuitive, facing a real trauma seems to be a pretty good cure for hypochondria. During this whole ordeal I have been able to serenely ignore a variety of aches and pains that, in the past, would have kept me awake at night. I guess the real crisis was just taking up all the mental energy I usually spend on phantom illnesses.
Music is the closest thing I have found to evidence of God’s existence. While it is important for many Christians to believe that Christ was human and felt our pain, for me it’s important that Hank Williams was human and felt our pain. I don’t mean to suggest that the abusive, substance-abusing elder Mr. Williams was in any way Christlike, but the next time you feel really shitty, go listen to “I’m So Lonesome I Could Cry.” He is singing your story. (Hank left us some great gifts. Of course, he also, however unintentionally, inflicted the music of Hank Williams Junior on the world, so I guess the scales are about even in terms of his legacy. ) Or take the Clash, or Johnny Cash, the Carter Family, whatever–music is the only thing that has really made me feel, in a deep way I can believe, that we are not alone down here.
Hire a professional to do your pest control. I paid through the nose to get some pros to take care of our mice, but they made the traps and poison invisible and I haven’t seen a mouse since, and it was worth every cent to not have to smash the little bastards myself.
Most of all, Kirsten is just my favorite person on earth.
Freedom
The fact remains that teaching is a really sweet gig, and three weeks after the kids come back from their sojourn in the work world, we all go on vacation for a week. For some reason, schools in New England have a vacation in February and another one in April, instead of one in March, which is what we had growing up in Ohio, and this makes absolutely no sense to me. I mean, on the one hand, February is probably the shittiest month of the year, and it is nice to have a break during that time. On the other hand, having a week off in the shittiest month of the year is not so very great if you don’t have the wherewithal to, say, fly to Aruba. Mostly you stay inside.
After work on Friday, I go with some co-workers to a bar near school where many people go after work, and I really enjoy being with these people. I am reminded again of how lucky I am–in other places where I worked, I was occasionally forced to socialize with my co-workers and usually wanted to run screaming from the room, so this is a nice change.
While we are sitting at the bar, Wham’s “Freedom,”which may be their best work, and which I haven’t heard in years, and which you inexplicably hear much much less often than some of their lesser tunes, comes on, and I begin bobbing my head, and when some of my co-workers begin to mock me and the song, I feel that I have to set them straight and explain that this is an almost perfect pop song.
Vacation begins, and we mostly have a pretty mellow time. Kirsten and I do naughty things like go out for coffee and lunch before getting a medical ok to do such things, and vow to remain silent about these activities when we see Dr. J on Wednesday. I rent Willy Wonka and the Chocolate Factory to watch with Rowen, and sitting there watching it with her, I just start to cry because I am so happy. It is one of the first movies I ever saw, and one of two movies I remember seeing with just my father, and it just makes me so happy to now be the dad watching this with my little kid that I sit there with tears running down my cheeks as Augustus Gloop goes ass-over-teakettle into the chocolate river.
I go for a walk up to the park and stumble on something really strange and cool–what appear to be abandoned animal enclosures. I am on the other end of the park from where the zoo is now, but there are zoo ruins up here–giant stone enclosures enclosed by the ghosts of metal bars, mostly rusted away. For some reason I don’t understand and therefore can’t explain, this just entrances me–I feel like I am ten years old again, and all I can do is say, “Coooooooooool!” It is cool and eerie in the way that all ruins are, and it is a site for illegal nocturnal partying in the way that all ruined structures in urban areas are, as the crack pipe I find on the ground attests.
I have been feeling like a Zen master again, which probably means I am due for a bout of depression, but I am enjoying it while it lasts. Petey takes me out for a beer the night before Kirsten’s big follow-up appointment with Dr. J and remarks on the fact that I seem really calm and happy, and I tell him I had a wonderful day today. Maybe tomorrow is going to suck, but today didn’t. Kirsten and I lingered over coffee, I watched this wonderfully demented and emotionally significant movie with Rowen, I found zoo ruins, and here I am having a beer with a friend–it is just about a perfect day. While I wish to God I could feel like this every day, I know that I will get depressed again, and things will piss me off, and whatever, but ultimately I think a day like this here and there is just about all any of us can hope for. I don’t know if it’s denial or if it is just serene living in the moment, and I’m no longer sure that there’s much of a difference. I mean, sure, some terrible fate may be waiting for her, or me, or all of us, but it didn’t happen today. People talk about denial like it’s a bad thing, but I don’t know–what the fuck are we supposed to do, walk around looking like Droopy all day, going, “Woe is me?” I can never really forget about it, but I also don’t have to think about it all the time–like I said, maybe enjoying today is some kind of denial, because I am not processing my potential grief or my fear or whatever, but I am fucking tired of doing that shit. I just want to have a nice day. And I do! And I think, if I’m lucky, I will have more. And like I said, there are no guarantees, so I think this is just about all any of us can ask out of life.
The next day Kirsten and I drop Rowen off at preschool and go over to see Dr. J, who has returned from her surfin’ safari. We have a long appointment which does not give us very much actual news but is very comforting. Basically it turns out that my binary, either/or view of this treatment was kind of wrong. Well, actually, it was totally wrong. It seems that there are tons of possible outcomes, and while we did not get the best possible outcome, we probably didn’t get the worst one either.
Kirsten still has palpable lumps in her breast. They are considerably smaller than they initially were, and the fact that they have shrunk so much seems to indicate that the high-dose chemo was, in fact, the way to go, since, as you may recall, the regular-dose chemo basically didn’t do squat against this cancer.
The fact that they are still there does not indicate that we should stick a fork in her either. The hope at this point is that they will do a mastectomy, radiation, and that the PET scan will show that the stuff in her spine is gone. In any case they are starting her on some non-hormonal anti-osteoporosis drug (did I mention that she came out of this treatment menopausal?) which also has been shown to retard cancer growth in bones.
Should her tumor markers start to rise, they will start her on herceptin, which may work as a kind of maintenance thing for years. It’s only been around for f
our years so far, and some people in situations similar to Kirsten’s have been on it for that long and are still kicking around.
We ask and ask about what if this and what if that, and finally Dr. J says she knows we want the certificate that says, “Certified, this Twenty-first day of February, 2001. Kirsten C Shanks will live disease free for at least ten years!”but they don’t give those out, even to the people who get complete remissions, and the bottom line is that we just don’t know. What we do know is that she can take a breath for a while and relax and not worry about dying right now, and that’s pretty much the best they can do.
It has to be enough, because it’s all they have, but strangely enough, for both of us, it is. Like I said, I am sure I am not done with feeling depressed and angry about this, but I do feel in some important way that I have turned a corner. Maybe now I can get up more days than not and not worry about everybody dying. Maybe I can start keeping my own house clean. Maybe.
After she says that, she also clears Kirsten to do all the stuff she’s been doing anyway, which is a relief.
We go out to lunch, and we stop by the thrift store run by the local AIDS charity, and they are selling vinyl records for a quarter. The fact that this is an AIDS charity–well, let’s just say that there are a lot of Barbra Streisand albums (and what appears to be Dan Fogelberg’s entire catalog. Who knew?) , but I manage to pick up a stack of LP’s from the 80′s that have one or two good songs on them, including Wham’s Make it Big, which actually has several, but most notably “Freedom.” Coincidences like this are almost enough to make me believe in an activist deity.
Another week goes by, and I go back to work, and maintain my good mood and hopeful outlook despite having, on Wednesday, to literally spend two hours trying to untangle a three-way conflict that centered on whether someone did or did not say excuse me when they bumped into someone else. Mostly, though, I get psyched up for Kirsten’s birthday party. A few weeks ago I thought it would be a good idea to have a birthday party for Kirsten, since her birthday was going to coincide with the end of her treatment. We have been very low-key about our birthdays for several years, but this year I felt like we needed a celebration that Kirsten has come through her treatment, that she’s still here, that I am happy she was born.
It Takes a Worried Man Page 20