I’ve wondered, and I bet most of you have too, from time to time, what I would do if I found out I had a fatal disease. I’ve daydreamed about what I would do if I learned I only had, say, six months to live. Come on, you know you have too! You can’t help it. We’re besieged with popular wisdom: live today as if it were your last, carpe diem and all that jazz. Get out there and experience life!
Awhile back I promised to tell you about some of the emotional crap that comes along with dealing with cancer and that’s what I’m getting at here. It seems I’ve moved from shock to acceptance to anger to shame and disappointment in myself for not doing those things I’ve always thought I would if faced with the knowledge that death may be coming sooner than expected. Frustration is another good word for what I feel. I’ve always thought I really would seize the day and do crazy things and leave letters behind or video recordings with important messages about life and death and love and hope.
The problem with this romantic notion is, of course, that doing most things takes time, money and energy. All three of which are in short supply when you find yourself facing down a life-threatening illness. Most of your time, money and energy are spent trying to ensure that the illness doesn’t ultimately turn out to be fatal.
Then it becomes an emotional dilemma. You know you should be out there ‘seizing the day,’ but really all you want to do is curl up in your chair with a big fluffy blanket and stare zombie-like at the TV while your loved ones bring you ice cream bars and glasses of water. This leads to guilt: I’m going to die and my last days are going to be my most boring. And all my loved ones are going to wonder why I didn’t write them meaningful and humorous letters about how they made my life wonderful. After all, I had plenty of time sitting around recuperating from treatments.
The truth is I really want to write those letters. And I really want to drag my weary body outside to smell the roses. But when I think about it, I think, it’s a million degrees outside, I’ve smelled roses and I don’t think their smell has changed, and I can’t take the smell with me, so what’s the point?
As for the letters, well once you start you have two problems. First, you have to admit to yourself that you might actually die, which is so ridiculous, because in all your life experience it’s been other people who die, not you. Okay I recognize this is in no way logical, but nonetheless… Then of course, if you get beyond that and really admit you could die, then you are so overcome with sadness for the people who count on you that you just can’t bear to do anything. Except you cry and cry and cry until you are totally drained and even more exhausted and can’t feel anything. Who can write meaningful and humorous letters when they can’t feel anything? So you eat an ice cream bar and pull your blanket around you more snuggly and pick up the remote.
The other problem is that once you start writing letters you discover that you can’t possibly write a letter to EVERYONE and what if you leave someone really important out and they forever wonder why you didn’t care enough about them to write them a letter, but you wrote a letter to so-and-so who you barely knew.
Before this all began, in my daydreams about what I’d do if ever I found myself in this particular situation (in addition to seizing the day and writing letters to loved ones) I’ve often wondered to whom I would write the letter that starts, “you probably don’t remember but….” Who would I get in touch with to let them know they made a difference to me in some small way they may not even be aware of? You know that friend who tricked you into reading your first novel (I double dare you to read just one chapter) and turned you into a reader (where are you now Carrie Comeaux?) or the teacher who really reached you. Because there are some people, including one or two teachers, who did a small thing for me that actually changed the course of my life for the better. Shouldn’t they know? I mean wouldn’t you get a charge out of finding out something you did, but have long since forgotten, had a positive influence on someone’s life? I know what you’re thinking. Why not just tell them? Why would you need to be dying to write a letter like that? And to that I say to you, heck I don’t know. Embarrassed to bring it up after all these years?
And so here we are, four and half months after diagnosis, and I still haven’t written a single letter. I still haven’t gone out and done some crazy thing I’ve always wanted to do but never got around to. The hard truth about cancer is that you may know that death is possible and you should prepare just in case. And you may know what you’d like to say to whom, but the drugs you take to dull the pain also dull the mind. On your bad days you’re weak and exhausted in which case you stay home, zombie-like in your chair. On your good days you work because, if you live through this, you can’t afford to lose your job. However, when the workday is done you have nothing left to give to writing letters or anything else. And then there’s this thing no one warned me about called “chemo brain” that makes it hard to form a cohesive thought sometimes. That’s why, to my surprise, I’ve had a hard time keeping up with the blog.
Now you know. But what I’ve described above isn’t something I think about or worry about every day. That’s how emotion is, one day you are up and another you are down. I’m not having too much trouble writing today after all.
The good news is I no longer feel like I’m going to die. My prognosis at the beginning was somewhere between 16% and 49% survival. I give this range because my diagnosis was Stage IIIC which none of the charts show because apparently it wasn’t a separate stage until 2003. Before that the stages went from IIIB to IV. Therefore the charts show survival rates for IIIB as 49% and for IV as 16%. I thought I’d seen a chart somewhere in the beginning that showed 36% survival for IIIC, but I can’t seem to find it now. At any rate, these are not good numbers. However, my cancer has shrunk rapidly and at my last treatment (which I’ll tell you about later) the onc could no longer feel any lumps at all. I’ll repeat that, much to the visible delight of my onc, he couldn’t feel ANY lumps at all.
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