Hill, special Ed and I sat down with the doc yesterday to hear just where we actually stand.
I had steeled myself for the worst, knowing though, that it might end up being a big anti-climax.. (“well.. you know.. it’s really not so bad. We think that you’re probably going to have to double your daily dose of aspirin.. I know that’s a pain, all that swallowing, but do that and we think you’ll be fine..” Or perhaps “Mr. Caldwell.. We are SO sorry. We were looking at someone else’s petscan. You’re fine. He’s pretty fucked, but you’re going to be just fine.” The broken ribs and colostomy are a bit of a giveaway, though.)
This was no anti climax.
He says that with no treatment at all I have 6-8 months so live.
On constant chemotherapy, he gives me around 2 and a half years. (and he noted that this course is likely what the biggest deal doc at Sloan would recommend)
The most aggressive version of treatment would be 3 months of chemo hoping for a good response from the tumors, then surgery, then more chemo. Then some voodoo, I think. If I made it through all that, it would put me in a statistical pool that had a 20% chance of surviving (defined as making it 5 years or more). The greater likelihood is that I would recur and end up right back where I am now (but with the knowledge that treatment had not worked.. again..)
The tricky thing about that 20% is that it’s just 20% of the people who actually make it through the treatment. FIRST I’d have to respond well enough to the chemo to qualify for surgery. THEN I’d have to have a successful surgery. And finally I’d have to endure adjuvant chemo.
The surgery would involve opening me up again. The surgeon said that it wouldn’t be QUITE as bad as the last one, but in the same ball park. The tumor in the mesentery is close enough to my stoma, that it could mean removing the stoma to get margins and making a new one.
The chemo itself has a list of side effects as long as your arm, the most common (besides nausea, vomiting, chemo brain, and hair loss.. the things we take for granted.. ) being very bad diarrhea. It would likely mean a backslide on the quality of life gains I’ve made with irrigation and the relative continence it provides me.
“So, doc. I’m pretty sick, huh?”
“I don’t know.. you don’t look sick to me! You DO have very serious disease.”
Obviously we have some pretty serious thinking to do. Obviously we need to get another opinion, or several.
For quite a while I’ve had something that I’ve wanted to say, or talk about somehow. I have touched on it in the past but never really taken it head on.
You would all do me an amazing service if you would entertain the notion that the fight metaphor may not be the most helpful one. Or maybe it’s not as helpful now as it was in earlier stages. It’s difficult to change the language around something when it is so engrained. “Fighting cancer..” “died after a long battle with cancer..” etc. But this implies that there are winners and losers. That if we die we have lost. But we ALL die. No one makes it out alive. That shouldn’t make us all losers. The most pernicious part of the fight metaphor for me is the notion that if someone dies young from cancer they simply didn’t fight hard enough. That if someone decides to forgo treatment, they have “thrown in the towel.”
I don’t see any grace in the desperate clinging to life that we call fighting in this metaphor.
Maybe instead I’m having a slow dance with a handsome and charming mad man who has made it quite clear that eventually he’ll have to USE the straight razor that he’s holding to my throat. I believe him. He doesn’t seem like a guy who lies. Why he has to cut my throat isn’t clear. In the mean time, it’s a warm embrace. I’m holding him, he’s holding me. He’s whispering the most beautiful and insane shit to me, all wise, all true. I’m trying to enjoy the dance as much as I can, trying to learn as much as I can, trying to stay present despite the knife at my throat. And now he’s starting to cry. You dig?
Don’t get me wrong. I’m a fighter all right. I have been from the start. Walking around barefoot with fists cocked. But this isn’t a fight.
I do want to live. I’m not nearly done eating up stuff yet. I’m just starting to get good!
Assuming that second and third opinions paint a similar picture, seeing how I tolerate the chemo seems to us like a reasonable first step as much as I dread it.
Naturally, I will keep you posted.