Joyful things, big and small

It’s been easier to find joy these days. It helps to have three-week stretches of time in between visits to the infusion center. And to be off the dreaded, zombiness-inducing compazine.

Mac and I have been trying to have a “summer of fun” and I’d say we’re achieving our goal. I’ve been tagging along on some of Mac’s work trips, and we’ve been scheduling long weekends to see our friends. There’s nothing Mac loves more than getting in the water, so we’ve been trying to make that happen as well.

All of this has gotten me thinking about delight — ostensibly the reason I started this blog to begin with. Despite enjoying myself more than I have since my diagnosis, I can’t say I’ve found much to delight in. Walking through museums in D.C. was actually the most alive I’ve felt in months. But it felt like a melancholy contentment. Enriching, but not delightful.

Friends point out delights to me — the amazing marquee for the Grand Lake Theater, cherry blossoms dancing in the wind, a tree stump that looks like a person’s face — and I love it, but I’m not noticing these things on my own.

Back when I was on aggressive chemo, I noticed that I had tunnel vision. On a drive to Sonoma, from the passenger seat, all I could see was the road ahead of me, and the navigation app on my phone. About halfway there, I turned my head to the right and the view was absolutely stunning. Clearly it had been for some time. I just couldn’t see it.

And that’s what life felt like in the aftermath of diagnosis, and in the midst of chemo toxicity. Managing anxiety and disbelief. Putting one foot in front of the other. I developed an armor to protect me from the world, which seemed scarier than ever. The armor helps, but it came with unintended consequences, like not being able to see the big beauty or the tiny delights.

Now that I’m several weeks into maintenance chemo, and therefore several weeks away from the extreme anxiety created by chemo toxicity, I’ve found that my peripheral vision has widened. I’m able to see beauty in what’s around me again. It’s such a relief.

But what I’m not yet able to see are the little things that once brought me delight. Still, I’ll take it. It’s good to have some enjoyment and contentment back. Maybe delight is on its way. Maybe it’s a muscle I need to relocate and exercise.

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.

Anatomy of a chemo week

It’s a chemo week. What does that mean? I’ll tell you:

Day 1: Infusion Center. I spend a lot of this day at the infusion center, which is a pretty big space with about 12 chairs and a couple of beds in smaller rooms. There’s a bank of cubicles in the middle of the floor plan, where the nurses sit. There’s usually about five nurses, plus a nurse practitioner, plus several medical assistants. It’s BUSY in there. This particular center is focused primarily on gastro-intestinal and colon cancers.

Most of the time, my day looks like this. Check in at infusion center. Wait. Get called in for vitals — my weight (which is perpetually going down these days, despite my best efforts to maintain it), my blood pressure, and my temperature. Wait. Get called in for my blood draw. This is where they access my port (I’m a cyborg now and have a port placed in my right upper chest. This is what they use instead of an IV to take blood and to deliver the chemo.) to pull blood for my blood tests. Then I wait for the results to come back. If anything is off with the numbers, it could mean no chemo that week.

Then I often have an appointment one floor up with either my oncologist or her nurse practitioner. They’re both really great at taking time for me and answering all of our questions.

Then back downstairs to the infusion center where I wait for a chair to get my chemo treatment. It’s about a five-hour process at the end of which they connect me to a small pump that holds one last chemo drug. I’ll carry the pump with me for the next 48 hours and I’ll hate every minute of it.

Day 2: Rest. Usually on this day I’m extremely tired. My face turns a bright shade of red around now, which lasts for the next few days. Overnight I usually sweat quite a bit, but I’ve yet to be running a fever. In fact, my temperature at this point is often low. Other side effects include cold sensitivity; numbness in my feet, tongue, and lips; cramping in my calves and feet; lots of nosebleeds. Plus, carrying the pump increases my anxiety levels. What if something should happen while I have this pump attached? What if, what if, what if. Not to mention that it’s annoying to carry around. It’s in a little blue bag and taped up against my torso. I can’t bathe while it’s on, and the tape they use is itchy, I’m guessing because I’m sweating and, well, it just is.

I try to take it super easy on this day. I get acupuncture in the afternoon usually, and the one-mile walk there and back is typically more than enough activity. I find day two to be extra challenging mentally, mostly because I feel very compromised in terms of how I’m feeling, but somehow it feels like I should be up for more. Ten chemo cycles in, though, and I realize that no … doing the laundry on day two isn’t going to happen. It’s too much.

Day 3: Pump Disconnection. We take my rosy cheeks back to the infusion center for them to disconnect that pump I’ve been carrying around for 48 hours. At the same time, I get a liter of hydration, to help counter the toxifying effects of the chemo. They also give me a steroid and a shot of Neulasta, which is what keeps my white blood cells at the right level. I usually get nauseated as part of disconnection, which I think is psychosomatic because there’s nothing new entering my system that day, at least not chemo-wise.

Days 4 to 7: Rest. For the remainder of the week, I’m mostly battling fatigue and some nausea. I rest a lot and try to remind myself that my body is really busy fighting cancer. I continue taking the herbs that are part of my acupuncture protocol. And I go to acupuncture twice a week to help the chemo along and, when the time is right, to help detoxify.

The effects of chemo are cumulative, so as I progress in the treatments, I’m seeing not only more side effects, but also more fatigue — and for longer. I’m ten cycles in right now, which is a lot. I go for chemo every other Thursday. Soon, somewhere around round twelve, they’ll switch me from this aggressive treatment plan to a maintenance protocol that will be a lot easier on me. It’ll be one drug every three weeks, instead of a cocktail of chemo every other week. I’m told the side effects will be some fatigue on the day of and runny nose — but I’m hopeful that bloody noses will no longer be part of the equation. So, existing side effects, but fewer. I’ll take it.