It Takes a Worried Man (19 page)

This round of high-dose chemo proves to be a lot easier to take than the first one. Kirsten doesn’t puke at all, and so they don’t have to keep her high as a kite to fight the nausea, so she is just a lot more with it, and this is nice for everybody. Also, for some reason they are allowing her to have her door open and walk down to the solarium this time, and that seems to make a big difference. It’s not really much of a walk or much of a change of scene–just a tiny lounge with other sick people in johnnies–but it beats the hell out of the same room for three weeks.

I go to see her and she doesn’t really seem much worse than when she had those initial doses of regular chemo–a little tired, but also cheerful and not completely worn out like she was before.

All of this is good news. So why am I so depressed?

Well, I guess I realize that I now have to shift emotional and mental gears again. Kirsten got her last dose of chemo yesterday. So she still needs to get stem cells again and everything, but in terms of her getting medicine to fight her cancer, we’re done. And I am terrified.

While this whole treatment has not been easy at all, it has been kind of ok emotionally to be in the thick of the battle and feel like we are really doing all we can to fight it. And now it’s just upsetting to realize that the treatment is over. They have used everything in their arsenal. There’s no more medicine to wait for: first it was, “Well, when they hit it with the big dose, that will really get it,” and then it was, “Well, when we get the second dose, that’s going to be the big left-right combination that sends the cancer to the mat for good,” and now it’s, “Well, we will wait a couple of weeks and see what happens and how well this worked.” And I am really scared. I am just not mentally prepared to have that information yet if it’s anything at all except complete victory.

I still hope and believe that she is going to beat this, but I am so scared, so scared of losing her. And right now it seems like we have rolled the dice, and we just have to wait and see what comes up.

This dice metaphor floats around in my head for about thirty seconds before it picks up the Rolling Stones’ “Tumblin’ Dice,” which has been playing nonstop on my mental jukebox for about three days, and I must confess that I’ve never listened very closely to the words, so it may be about something completely different, though from the words I remember it doesn’t seem to be about much of anything, but anyway I don’t even own a copy of
Exile on Main Street
to go check. I recognize this as a gaping hole in my record collection. It is particularly problematic right now, because when I get a song stuck in my head, actually hearing it is the only way to exorcise it, which is why I bought that Stooges album.

Exile on Main Street
is, if I remember correctly from reading about it and examining Danny’s copy, the album they made where they all holed up in a French chateau for some long period of time and wrote and recorded the album there, and you can just tell from the photo on the sleeve of Mick and Keith laying down vocals and at least one of them has a half-empty bottle of bourbon in his hand that it was probably a debauch of really epic proportions, and of course that leads me to the great cosmic joke of Kirsten being sick while Keith Fucking Richards is this healthy grandfather, but mostly it makes me want to hole up in some French chateau with all my friends and a bunch of booze and groupies, and even if I didn’t end up producing one of the greatest records ever, well, it sure sounds like a hell of a vacation.

I have been thinking a lot about how this book ends, and I need to confess to you right now that I think I am going to disappoint you.  Because, of course, what you want, if you are at all like me, is a real ending. I always hate movies and books that just stop rather than ending, or that get cutesy with the end. I read
Infinite Jest
, all eight thousand pages of it or whatever, and then the fucking thing just stops and doesn’t tie up any of the plot lines you’ve been following for 7,999 pages, and you keep reading through to page 8,000 because you care about the characters and the situation, and then he basically spits on you for being chump enough to care about the characters and situations and says, “No no no–view this novel with ironic detachment and appreciate on an intellectual level how clever I am!”

When I was in college I was persuaded by my pre-Kirsten girlfriend to read
The French Lieutenant’s Woman
, and you can tell I was infatuated and eager to please since I read a postmodern take on a Victorian novel, basically combining my two most hated genres in one book, and, there, same deal, I got all wrapped up in the stupid romance, will he or she marry below his or her station or whatever it always is in these insufferable books, and then it has three different endings. Oooh, that’s deep, man. People still read this book (largely, I think because Meryl Streep looks really fetching in that cloak on the cover) and think it’s great that this guy abdicated the author’s job, which is to pick an ending.

All of which is to say, I feel your pain. Here are my three possible endings:

This, I guess, is the happy ending. No guarantees, of course, but we can pretty much get on with the business of trying to put our life back together without having to worry, at least for a period of time, about treatments and tests and whatnot. Maybe it comes back, maybe it doesn’t, but we get to relax for a while.

I have no idea if that’s even a real medical term. I guess it must be, since they throw “complete remission” around, that pretty much implies that there exists something less that complete remission, otherwise to call it complete is redundant. Anyway, this ending, I think, bites.  Maybe. This ending means more treatments, followed by more treatments, leading up to more treatments…you get the idea. I guess there will still be breathers in there, and I will continue to believe that, you know, she will respond really well to herceptin, or those new tumor-starving drugs will be perfected, and basically that I still get to have Kirsten for a long long time. And I am sure that there will still be happiness and joy in that time, because she makes me happy and I try to do the same for her, and I know Rowen cracks us both up on a daily basis, but I guess we’ll be all about fighting cancer forever.

OK, now I’m getting cute. This is the ending of
The Unbearable Lightness of Being
, the movie anyway, I never read the book, I know, I know, it’s magical and lyrical and I really should read it, but I am trying to read only things with exploding heads and/or lesbian vampires for the time being, but the movie was this three hour snooze fest in which Daniel Day Lewis has hot adulterous sex in the first like 20 mintues and spends the rest of the movie not having enough adulterous sex to make the damn thing interesting, but too much for his wife’s taste, and somewhere in the second hour the Russians roll into Prague, which I guess was some kind of metaphor I was too stupid to get, and then he keeps cheating, and just as you’re wondering if they are ever going to figure their relationship out and whether you are ever going to care, they die in a car crash.

They all die. That is the ending, really. It’s everybody’s ending, and we are all fooling ourselves if we think it’s not. So whatever we do or do not know about Kirsten’s death, we know it’s inevitable. So is mine. So,  I’m sorry to say, is yours.

My hope is that whatever happens, we can reach some kind of peace with this idea. That we don’t have to have some imaginary guarantee that we get to see our grandchildren get married or whatever, but that we can just get up tomorrow and do our thing and love each other and laugh and have sex and say at the end of the day, like Ice Cube, “It was a good day.”

Unlike John Fowles, I promise to pick an ending, but what sucks is that I will not be able to tell you, “now we know for sure that she’s beaten it forever,” and I’m sorry, I know that’s a damn good ending that I just can’t provide, but if that sucks for you, believe me that it sucks a whole lot more for me.

I have sold a lot of records at used record stores, and I only have two regrets. One was that in the ninth grade I sold my copy of AC/DC’s
Back in Black
because I had liked it in the seventh grade and I was so beyond that.

I bought it again four years later. No harm done, except I was out several bucks on the deal.

The other one is that I sold the first Fat Boys album with the long song about them going to jail because they broke into the grocery store to steal a midnight snack. Sigh. The album is out of print and probably some kind of collector’s item, and it just can’t be had for love or money.

It’s okay, because now I am becoming one of the Fat Boys. Admittedly I have not swelled to Human Beat Box proportions, but I am getting large in the gut and breasts. I can still hide it pretty well under my clothes, and I haven’t had to go over a 34 waist yet, but with my shirt off–well, I have a larger gut than I’d like and quite an impressive rack.

I guess it’s a healthy sign that I am concerned enough about this to want to do something about it. I mean, part of it is that, you know, it’s winter, and it’s harder to exercise as much, and I basically do a lot of staying inside and eating in the winter, but really it’s all about the sweets.

See, I am a sweet addict. And I need to go cold turkey. I am only half joking here. I mean, I do go days without sweets, and I have never lied to cover up my sweets habit, and my loved ones have not arranged an intervention, but the bottom line is that it is much much easier for me to have no cookies than one. Now I could not sit down and eat a whole bag of Oreos, but I will eat maybe eight. I will eat them until I feel disgusting or the supply runs out, whichever comes first.

Brownies, muffins, same deal. It’s really all about the baked goods with me rather than candy. And so in this time of high stress (not to mention four children’s birthday parties in the space of 5 weeks), I have turned back to sweets as a stress reducer.

It’s not working. Now I’m just stressed out and fat.

But after my dad died, everybody brought over food–tons and tons of food for weeks and weeks, and I got the message that food comforts you, food is your friend, and now it still is, except it’s not a very good friend, so it’s time for me to go cold turkey on the sweets. (Yes, alcohol has a lot of calories too, and giving up beer and wine would probably help too, but I can’t give up all my phony stress reducers, now can I?)

I have been trying for a week and have lost two pounds. Of course, that was on two different scales, so it might just be a calibration difference.

I sure hope we get good news about this treatment. I don’t know if I can resist the siren song of the double chocolate muffins if we don’t.

One night I dream that Kirsten and I are in the hospital, and we are both getting chemo. Suddenly I have this moment where I realize–hey, wait a minute! Do I have cancer? I immediately check my testicles. No…I rack my brains trying to remember what part of my body it’s in. And then I realize that I don’t have cancer at all. So what am I doing here getting chemo?

This is the thought that wakes me up, and I lie there in the dark kind of confused in that just-woke-from-a-weird-dream kind of way. Eventually I wake up enough to realize that no, I don’t have cancer. I guess this is my subconscious trying to tell me that I feel like I am having this same experience, that, you know, as Sam and Dave said, when something is wrong with my baby, something is wrong with me.

And while this is true to a certain extent, it also is not true in a pretty important way. I worry about Kirsten, I sleep like shit, I eat too much, but the bottom line is that I’m not sick. And she is. And I can’t be where she is. I have felt this very keenly at times–sometimes in the early days after the diagnosis, or after a particularly bad piece of news, Kirsten would be kind of withdrawn, or just depressed, and I would try so hard to cheer her up that I would just be annoying, and I realized that she is just in a place where I’m not. I can imagine what it’s like being there, but I’m not there, and she is.

I think about this when she is in the hospital. As I leave her alone in her room with the chemo pumping into her veins, she seems very alone to me. Even when I am sitting next to her, I am not with her. She is fighting for her life, and while, you know, I can sort of be Burgess Meredith in the corner, she is the one trying to go the distance with Apollo Creed.

The Carter Family, of course, have a song that speaks directly to this whole thing. It’s called “Lonesome Valley,” and it goes:

Everybody’s got to walk

That lonesome valley

They got to walk

It by themselves

There’s nobody here

Can walk it for them

They got to walk

It by themselves.

It then goes on to substitute, “my mother” “my father” and something unintelligible for “everybody.” As usual, they are right on target. I suppose what they are really talking about is that you ultimately have to die alone (unless, you know, you are in a plane crash or something), but I also take it to mean when you are suffering, when you are struggling, you have to do it by yourself. It says on the back of the CD that this cheerful little number was a number one hit for them, which just goes to show you that the pop charts were a very very different place in the 1930s.

So Kirsten has to walk that lonesome valley by herself. If it was me, I would be thinking constantly about death. I don’t really know what she thinks of– I guess when she is in the midst of treatment it is pretty easy to just focus on the moment–now my muscles ache like hell, now I have to puke–and not worry about eternity.  But I know she is scared sometimes; she is living most people’s worst nightmare.

I think about this as I walk down the corridor inside the bone marrow transplant bubble ward one day and see all the patients  in their johnnies. Most doors are open, and most of the people are in bed, but I look in at all these people and think, well, they got up this morning. They are walking that lonesome valley by themselves, and most people live in fear of being where these people are, but they got up today, and they are doing it, and that lady who was on oxygen yesterday isn’t today, and while some of these people won’t make it and others will walk out of here and be well for decades, today I feel, and I know that this sounds like the kind of cheesy, facile, inspirational crap I have been mocking for months, but I am inspired by all these bald people in blue johnnies. I know second hand how fucking hard this is, and when I see a guy shuffle down the hallway just to look out the window, I just think well, shit, there goes a superhero. And this doesn’t make me think, oh well, I should really appreciate what I have or anything like that, it does not for a second give me any perspective because I am a self-centered shit, but it does make me proud to be a human. Whatever it is that lets these people get up and eat their shitty hospital food and shuffle down the hallways and live every day, you and I have it too–we must, because I don’t for a second believe this well-meaning bullshit that several people have shoveled my way about how God only gives us what we can handle. What about the people who are tortured to death and die screaming? Is God up there figuring, well, a certain number of broom handles need to get inserted into rectums today, so I will pick the people who are strong enough? I don’t know much about God, but I sure don’t want to believe in one that operates that way.

So I don’t believe that these people’s diseases hovered around looking for somebody who could handle being sick. They are people like you and me who are sick. Today these people are not scary and pathetic to me (though they might well be tomorrow and they sure as hell were yesterday). Today they are superheroes, not because they are special, but because they aren’t.