An extraordinary five years

I saw my oncologist last week. She gave me the results of my latest CT scan, and I asked her how long I can expect to live. She gave some context before saying “Five years would be extraordinary.” So there’s that. I wish I could really articulate my feelings about it, but I’m kind of numb. Numb and sad and internal.

Honestly, it wasn’t exactly a surprise to hear. I mean, I know the statistics. The first oncologist we went to said that statistically, I could expect to live up to a year without treatment; 18 to 24 months with treatment. So compared to that, five years is quite extraordinary. But it’s hard to compare me to the statistics since I’m not actually in the primary demographic that gets this type of cancer.

I’ve been reading a couple of memoirs by people with cancer. Right now I’m reading Audre Lorde’s Cancer Journals. She talks about how strong her urge was to live and to continue her work. It makes me feel like there’s something wrong with me that makes it so I can’t relate. In the other memoir I read recently, the author writes about making the most out of each day. I’m working on getting there. I’m not there yet.

Some updates:

Overall, the results of my latest CT scan were good — continued reduction in size of many of the tumors, and continued calcification of tumors throughout my liver.

They’re now putting me on what they call a “chemo holiday,” which is a maintenance regimen. Instead of going in every 2 weeks for an infusion that spans 3 days, I’ll go in every 3 weeks for a 30-minute infusion of a drug called Herceptin. The goal is to keep the cancer cells dormant for as long as possible. How long that might be is anyone’s guess, but it will probably be counted in months, not years.

I’ll get a CT scan every 3 months now, and once we see more tumor growth it’ll be time to make some decisions about going back on chemo.

Also in 3 months they’ll do an echocardiogram to check my heart function (Herceptin can have an effect on this, but so far I’m doing well). They’ll also do another upper endoscopy, which is the test that originally found the cancer to begin with. They’ll check out the primary tumor site, which they can’t view on a CT scan since it’s at the juncture of the esophagus and the stomach. Then it’ll be time to make some decisions about radiation at the primary tumor site.

Now is when I say that I absolutely hated chemo and have no desire to get radiation. So I’m really not looking forward to making these decisions when the time comes. But I’m grateful to have them. Not everybody responds as well to chemo as I did.

For now, I’m thinking about how long and how short five years is. I’m thinking about how hard the last eight months have been and whether that’s what I should expect for my future. I’m thinking about what decisions I’ll make about chemo and radiation with all of this in mind. And I’m wondering how to traverse the bridge from melancholy and aimlessness to making the most of my days.

I don’t want to, but I will

I went to a somatic bodywork session recently that helped me come to the realization that my anxiety is a mask for the fear that is underneath it. Fear of dying. Fear of suffering. Fear of … So, as homework I wrote a list of the things I’m afraid of, hoping to move some of the anxiety through me.

Something that came up on my list is that I’m afraid I’ve given up. Also on the list: I’m afraid of giving up. I’ve really been mired in depression, and not feeling proactive or in control of my own actions or destiny. Instead I feel a little bit stuck inside myself. I’m very internal and quiet these days. I don’t have much to say. I’m grateful that my friends come armed with conversation prompts when we visit.

I’ve been doing all the things — taking my herbs, going to acupuncture and therapy, going for walks — but not with the same enthusiasm as at the beginning of my chemo journey. Instead it’s been more like, “I don’t want to, but I will.” I’ve been doing what I need to do, but it feels like I’m just going through the motions.

But, you know what? I didn’t do chemo last Thursday. I mention this because I feel like it’s an example of me making an informed choice instead of passively going along with what’s expected of me.

The original goal was to do 12 rounds of chemo. (I managed to do 11 rounds, which is no small feat.) But I decided that the side effects were getting to be too much, and confirmed with the oncology team that there’s very little difference between doing 11 rounds and doing 12. So I opted out. Tomorrow I’ll get a CT scan and depending on what they say, I’ll be on a maintenance schedule — every 3 weeks instead of every 2, and only one drug instead of the full chemo cocktail. 

Also, a side note: It turns out that the cause of all of my brain fogginess isn’t the chemo after all, but the medication I’ve been taking for nausea. So I stopped taking it last week, and guess what? No brain fog. Go figure. It’s much better to not have brain fog. So much better.

I started taking an antidepressant that should help with both my depression and my anxiety. And while I’m still early on in taking it, I have noticed a lift to my mood, which has made it easier to get out of bed in the morning and to feel more positive. Today, for example, I feel pretty good. In fact, between getting a good night’s sleep, the antidepressant, and not taking my foggy-head-creating medicine I almost feel — dare I say it — normal. Normal but quiet.

So that’s where I am these days: depressed, anxious, quiet, and still a little foggy, but trying hard to move toward something more comfortable. Trying to move from “I don’t want to, but I will” to a place where I feel more in control. Trying to move to a place where I feel like more of an active participant in my own healing.