I look at the grass that wraps around the subway entrance at University and College and all I want to do is lie down on it, just spread-eagle face to the sky. This is the first sign that I am not coping as well as I thought only minutes before. Lolling about on the grass is only acceptable inside of parks, with the exception of drunks and children, who can lie anywhere without a second glance. A blonde girl in a flaming red shirt and high-waisted shorts lying on the strip of grass between the sidewalk and subway entrance would attract attention to herself. I slip Ativan under my tongue — one, two –and count to five.
I told my psychiatrist about my panic attack at my last oncologist appointment. And I told him about my upcoming appointment, the one where we would have the latest blood tests and CT scan results. He asked if I wanted to go through some scenarios together to practice and prepare myself for the next day. I said yes. He said, okay, what could happen? I could find out the chemo is working and the cancer is shrinking and that would be great. It’s also the least likely of the scenarios. I could find out that the results from the CT scan are indeterminate — that we can’t say one way or the other if the disease is being held steady, or if it is advancing but not yet noticeable. In that case, I’ll have to decide between continuing the current treatment, switching to another, or just stopping and watching for awhile. And how am I supposed to pick between those? It would almost be better if the results came back conclusive of progression. At least then there’s no uncertainty about what to do. I just do what the oncologists want me to do, what they feel is best.
And you know what? It was a relief to have the results come back showing progression despite the latest chemo I’m on. I thought I would be gutted by that news, but that didn’t do it. The progression didn’t do it.
What comes next grabs me by the neck and pushes me against a wall (that happened to me once, when I was 16, a boy I was friends with grabbed me by the neck and pushed me against the wall as a joke. It was a terrible joke, but so is this, so I’m kind of thankful to have the experience already in hand, this “joke” of being pinned helpless to a wall by someone or something much bigger than you in the name of humor, when the humor is awfully hard to find).
I’m throwing carbo/taxol out the window. Carbo/taxol, the regimen my gut was against from the beginning, but the gut is rarely consulted in making treatment decisions. Instead, we’re looking at Phase II and III trials — oh, look, here’s a good trial for me. It’s the drug my oncologist wanted to put me on for this regimen but couldn’t because it isn’t available right now, except for research. Well, I can do the research trial and get the drug, our number one choice, right? No, because I’ve had three lines of chemo now and for some reason that makes me ineligible. Well there’s this other one available. It’ll mean coming in twice a week, you might get the placebo with the drug or you might get the drug with the drug. But wait — the drug companies might not want me because I’m too “high-risk” what with my previous bowel perforation (despite the fact that it was a non-cancer-related perf). Nurse says, not likely, but here’s the info to look over just in case I can strong-arm the drug company into taking you on, if you want it. Oncologist suggests looking into the Phase I trials again — the last of which I failed to meet the criteria, I’m always failing the criteria — in case there is some new drug being tested that wasn’t being tested the last time we were looking for me.
If we exhaust all these options, we look at other standard second-line treatments, whatever those may be. We haven’t even got there yet. The joke is that I’m told about all these options — all these good options out there, and I can’t access them. Because the drugs aren’t available outside clinical trials. Because I’m deemed “high-risk.” Because I’ve had too many lines of chemo (a real kicker because I never wanted to do this last line of carbo/taxol anyway, I knew it was a bad idea, and if I’d done something else, I might be eligible for or not needing a clinical trial).
And this is what grabs me by the neck. I thought that progression would mean a clear path forward, but instead it offers all these potential paths forward, but not for me. For me, it looks like we’re just going to start throwing regimens at her to try to figure out which will work, in the words of my oncologist as delivered via email to my other oncologist. (To be clear, this is the exact situation she hoped to avoid with me. She wants to get me in a trial. He wants to get me in a trial. I want to get me in a trial. But the trials don’t want me and the drug — THE DRUG — that everyone would like to give me is not available. It’s not available. The drug company is not making it. It is a very good drug and it is not available unless you can get on a research trial and I can’t go on the research trial because I’ve been treated too many times.)
The good news I was greeted with was that I don’t have any cancer in my lungs. Maybe I’ll celebrate that news with a cigarette. It would accompany the bottle of wine I’m downing quite nicely.
The hardest part of all of this is knowing that whatever I end up going with, barring a miracle, will be the fourth or fifth or sixth treatment choice of my oncologists. It’s hard to put a lot of faith into the fifth-best option, you know? Makes you want to lie on the ground in public.
I talked to my psychiatrist about maybe stopping treatment for awhile — I have no symptoms other than those brought on by treatment, so what not watch and wait? He said that that is called waiting for the disease to declare itself and that it’s something a lot of people do. I think my disease has declared itself. Through imaging, at least.
I have plenty more to say on all this but I’ll stop now lest my increasing drunkenness leads me down a path of no one will love me, what’s the point of treatment if I feel fine without it and it only makes me feel worse, maybe if I just ignore it, it won’t do anything, what if the chemo is making it worse, and I told my doctor I didn’t think carbo/taxol was a good choice and now I’ve just wasted the last four months on a stupid drug that stupidly didn’t make me any better, indeed, I am worse off than I was when I started it, etc. That maudlin, woe-is-me thinking can get a little too self-indulgent in times like these.
This is me, signing off.