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.

Fight Club was right

I went to a support group for women with metastatic cancer. It was the first time I’ve been to a support group. Before this, everything I knew about support groups I learned from watching the movie Fight Club.

Fight Club gets a lot right about support groups:

  • Guided meditation: Our group started with one that was about, among other things, finding your happy place. 
  • Talking about feelings: After the meditation, we went around and shared what kind of week we had. But not in a superficial, “it was fine” way. More like a “here’s what I really struggled with this week” sort of way. The conversation then unfolded from there, based on what we each shared.
  • There was some guy there who was just pretending to belong: Wait, no. That didn’t happen. That only happened in the movie.

It’s not lost on me that I’m thinking of the movie Fight Club while I’m in a fight against cancer. I’m trying to keep the fight against cancer and not against parts of myself. It’s one thing that I have cancer, but it’s another thing that I feel like cancer has changed my personality. I’m an anxious person now, and never was before. I feel armored against the world and just want to hunker down in my apartment; that’s new, too. These changes are part of why I started this blog — to reconnect to the parts of me that can take delight in everyday things like spoon covers, ice cream, and simply sitting outside.

One of the ways the support group was helpful is that it made me feel more normal. I haven’t been spending any time with other people who have cancer and so it has been hard for me to know how to think about some of the ways I’ve been feeling. Am I the only person who feels this way, or is this something that is more universal?

During the group I said what was going on for me, despite my loathing of forced participation in group settings. I told them about my aimlessness and hopelessness, feeling trapped/stuck, the anxiety — and it was clear that I am not alone in these feelings. The participants recommended going outside more, doing art projects, and talking to my anxiety as things that have worked for them.

So, support groups. Another tool in the toolbox to be grateful for.

Dream a little dream


I haven’t been remembering my dreams. This is unusual for me because I’ve always been a vivid dreamer. But since my diagnosis, it’s like I haven’t been dreaming. Even if I wake up from a dream, I don’t have any recollection of it.

So it’s been a pleasant surprise to have started to remember some dreams. And they all have one thing in common — they’re joyful; I’m very happy in each of them, even if what I’m doing isn’t particularly exciting.

I had a dream about crushing it at work and being filled with joy. I had another dream where I was at some kind of retreat and kept telling everyone that my first night there was the most relaxed I’d ever been.

The other night, I had two dreams I could remember. I woke up from each of them feeling lighthearted. Delighted, even. Who would have guessed that my subconscious is so busy seeking out the delight same as I’m trying to in my waking hours.

Trying to spread my wings a bit

We’re planning a trip to Los Angeles. This isn’t something that seems like a big deal, but it’s going to be the first time I’ve gotten on an airplane since my diagnosis. One thing that nobody told me about having cancer is that I would have fear. Fear fear fear. It’s like the side effect that keeps on giving.

So my birthday is coming up, and so is my love’s. And it’ll be our dating anniversary. We’re committed to celebrating lavishly since we’ve mostly been, you know, at home and getting chemo every two weeks. Still, it makes me worry.

My world feels smaller now that I have cancer. I worry a lot. I worry about leaving the apartment. I worry about getting from point A to point B and back again. I worry about money. And health insurance. I worry about slavery and colonialism. A lot. I worry about earthquakes.  I worry about this trip to Los Angeles.

Let’s all agree that getting a metastatic cancer diagnosis is a trauma; I worry about another trauma. How will I cope if something else happens? Some of my worries (e.g., earthquakes) are founded. Some of them are a little more far flung.

I’ve been trying to work with my fear and worry. In therapy, it’s a primary point of discussion. I’m trying to invite the fear in and make it a welcome part of my emotional landscape, rather than fight against it. I’m trying to remember that my diagnosis isn’t that old yet. It’s only four months old. Four months of fear. Well, one month of being really fucking sick. And then three months of fear.

I’m hopeful that I’ll grow out of the fear. That it’s part of this “phase,” whatever that means. I want to get out more. Take in more delight. I want to live in the bigger world.


Melancholy days

Some days, like today, I find it hard to find delight. Some days, like today, I’m in the middle of a 48-hour chemo infusion, it’s raining, I’m kind of tired, and my face is rosy red from treatment. I’m feeling pretty down.

I listened to a guided meditation by Tara Brach yesterday. The Yes Meditation. It’s been helpful to think about today. To remember that even the melancholy days are to be embraced with a Yes instead of turned away with a No. Or at least acknowledged, if the Yes is too much to get to. My friend Karen sent me a few cartoons about inviting your fear in for tea and crumpets. Here’s one of them:

tea with fear
You can’t get rid of your fears, but you can learn to live with them

I have a lot of fear. And I’m trying to sit with the acceptance of where I am. It’s both easy and hard. And then I’ll go to acupuncture. You know. Friday afternoon.

I remembered recently how much I can find delight in what I like to call “accidental expanses of time”–those two-hour or more chunks of time that sometimes make themselves available. And so I wrote a list of things that I love to do when those expanses appear and it’s been helpful. I had a couple of hours in between things the other day so I made a vision board. It felt great. Other things on my list include reading, writing letters, going to a museum. Things like that.

What I’m less good at are the smaller chunks of time. The 30 minutes between finishing a task and my next appointment. Maybe I need a list for that, too.

On delight…and spoon covers

Spoon cover: Enjoy Your Meal
Enjoy Your Meal

“What is this,” you ask. It’s a spoon cover. It covers this spoon and also tells me to enjoy my meal (which I DID!). Also? It’s so cute. This spoon seems so much more special than it otherwise would have, don’t you think?

Why the spoon? Let’s all agree that multiple cutlery covers would be too much. But why not the fork? Why not a long knife cover, or a cover for the chopsticks? I don’t know, but I think the spoon choice was the right one.

And why am I writing about this spoon cover exactly? Well I find it utterly delightful, weird capitalization and all. (I can’t not comment on the capitalization. The editor in me can’t just let it go.) The spoon cover made me slow down and enjoy my meal a little bit more than I would have otherwise. It made me forget my circumstances for just a moment and smile.

What are my circumstances? Good question.

Well, in November 2016 I was diagnosed with stage 4 gastroesophageal cancer. Stage 4 meaning it’s metastasized (specifically to my liver, pancreas, and some lymph nodes). Gastroesophageal meaning the primary tumor site is right at the junction between the esophagus and the stomach. Stage 4 meaning that it is allegedly incurable. Stage 4 meaning, holy shit.

So I think about cancer a lot. There are a lot of tears. And I don’t want that to be everything there is to my emotional landscape. I want to be sure that I’m using this time of healing to reconnect to those things that bring me great joy. Which, thankfully for me, is a lot of things. I believe that I can use delight as part of my healing process — along with the chemo and the acupuncture and the herbs and the rest of my treatment plan.

I am a delighter. I find great delight in small things. I’m going to share that delight with you. I hope it delights you, too.