Crushing it a little bit

Last chemo cycle was my best one yet. The first week wasn’t spent at the bottom of the pit of inconsolable despair and hopelessness; mostly I just floated around at the top of said pit, which is much more tolerable. My love and I made an extra effort to keep me active this time around: more walks, seeing live music, connecting with friends. It seemed to really help.

The main physical side effect of this chemo cocktail is fatigue. And while the fatigue is extreme enough that I could justify staying in bed all day, the only thing that really has an impact on chemo fatigue is physical activity. So I’m working on that.

I’m struck by the difference between what I can do in my first week of my chemo cycle versus the second. During my first week, I walked three blocks to a restaurant, sat for an hour to eat, walked back home and needed to nap for two hours. The next week, I walked to a restaurant more than a mile away, with no nap needed when I got home.

During my first week, my physical therapist noted that my gait had really declined—I was high-knee walking because my lower legs felt extra heavy. The next week, I aced my physical therapy progress tests and managed to take my first shower standing up, without a bench.

I struggle to not judge myself during week one, to accept my limitations as part of the new rythym of my life. To remember how good week two is. It’s a practice. It’s definitely easier said than done. Especially when I sit back and realize that, best-case scenario, this will be the cadence for a long time coming.

My oncologist is loathe to give me another “chemo holiday” since my last one ended with a hemorrhaging brain tumor and metastasis to my lungs and bones. So this every-two-week chemo cycle will continue until the chemo stops working, or I can’t tolerate the toxicity.

I’ll be honest, despite my gratitude for treatment that is keeping me alive, I resent my situation. Despite my happiness for people with earlier-stage cancers finishing their treatments and being declared “cancer free”—and believe me, I am overjoyed every time—I can’t help but feel a pang, that my port will never be removed, that I’ll be getting brain MRIs and full-body CT scans every other month for forever, that I may be on chemo for the rest of my life.

But, who really knows the future, right? Last time I saw my oncologist, she mentioned I might be eligible for immunotherapy. Last time I made pancakes from a mix I messed it up and became convinced that it meant something, that maybe my itty bitty brain tumors are waking up. Last time I was on chemo I couldn’t touch things in the refrigerator because of cold sensitivity. This time ice cream is consumed almost daily, as it should be.

“I go on and on and on and on.”–Erykah Badu

On hair loss and service dogs

I had a few days in a row without tears. Up to, and including, my second round of chemo. Then my hair fell out on Friday. Well, to be honest, first a handful of my pubes came out. Then I reached up to do my hair and it started coming out. Handful after handful after handful. Until the sink was overfilled with my hair. Why does cancer have to be so damn dramatic?

At first I was fine. Mac and I went to the wig store and picked out a couple of wigs. Malachi came over with clippers to shave the rest of my head. Belinda came over and gave me a headwrap refresher and she and Erin helped me pick out two wigs that were a little less crazy than the ones Mac and I had chosen.

My head looks gnarly. I have a few swaths that are still completely smooth from the cell death hair loss following brain radiation. Then the rest of my head is more stubbly. And, of course, there’s a huge scar taking up a good amount of real estate.

It feels stupid to say it, but the level of anxiety I have about the possibility of my eyebrows falling out is through the roof. It’ll probably happen. So there’s that.

Everything feels extra fraught right now. Like I’m convinced I’m going to die next week. Mac helps keeps me grounded in the present. He reminds me of a more full truth of each moment.

A truth is that today during physical therapy I got to lay on a mat and get stretched out while also looking over at a smiling Mac and a sleeping support dog. There’s nothing wrong with that.

Another truth is that I can’t feel my left leg in space. So every 30 seconds on the exercise bike I would notice that my foot wasn’t even on the pedal anymore. But each time, I lifted it back up and placed it back where it belonged.

Another truth is that 3 months ago I was in a hospital bed with a hemorrhaged brain tumor and the best option for going to the bathroom was simply to pee on myself and then call the nurse to change my pee pads. Today, I am walking around without even a cane (most days). Even on the worst days of chemo, I can get myself right to the bathroom on time and on my own.

I guess that’s to say I’m trying to widen my view a bit. And take more control of the narrative. It’s been a lot worse. It’s going to get worse again. Today, though? I guess it’s just fine.

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.

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.

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.