The thing about my left thumb

There’s a lot about chemo that’s obvious: It’s hard. There will be nausea. Your hair might fall out.

But there are all these little things that they don’t really warn you about, no matter how long a list of side effects and treatments they may give you.

For example, nail shape changes. Last time I was on chemo, I thought I was losing my mind a little bit because the nails of my big toes were becoming ingrown and it just seemed so weird. They didn’t quite look right. But then again, I don’t spend a ton of time staring at my feet.

But this time on chemo, my fingernails are completely changed. Apparently this is a thing. I don’t like it.

Looking at my hands has become a constant reminder that my life will never be the same again. Like I needed that nudge. Maybe I’ll be on chemo for the rest of my life. Maybe my left thumbnail will always look like a stranger’s oddly rectangular nail. It certainly doesn’t look like it belongs on my hand.

The nurse practitioner in the infusion center tells me that people tolerate my current chemo cocktail better than my last one. With the last chemo, they push to get people to twelve treatments. With this one, I guess one could go on indefinitely.

This doesn’t make me feel better. I think it’s supposed to.

Other things that don’t make me feel better: Setting intentions for 2018. Being told how to feel. Anything posted to NextDoor.

Things that do make me feel better, if only sometimes: Ice cream. My beloved reading to me at night. Meditating. Connecting with friends.

Don’t mind me, I’m just meditating

I’m not super big on New Year’s Resolutions. I usually come up with three very achievable goals, and the third one has remained constant for the past 20 years, at least: Don’t suffer fools gladly. No. 3 has served me well.

This year, on top of my “resolutions,” I also decided to do more meditating. I’ve been practicing once or twice a day since January 2. (I slept through the entirety of January 1 because chemo and a head cold.)

I’ve been doing a lot of guided meditations, which is a new practice for me. I mostly appreciate guided metta, or lovingkindness. My favorite one right now is this guided metta from a workshop by Arinna Weisman on living with chronic illness or pain. I also appreciate this one from Tara Brach, on opening and calming. I’d love to hear what meditations work for you.

One of the things I’m appreciating about my new meditation practice is that it makes me feel like there’s room for more than despair, hopelessness, discomfort. It expands my perspective, even for a short while. I’ll take a short respite from suffering over no respite.

I signed up for a couple of one-on-one meditation sessions with a teacher I trust. In our first meeting, I told her about all the things that make me cry about chemo. For example, running into someone at the infusion center whom I haven’t seen in over a year, and who frankly isn’t looking her best, though her spirits seem bright as ever. Or watching the woman in the chair across from me finish her chemo, pick up her things and tell the nurse that now she’s going to the hospital to sit with her husband who is currently on a 24/7 chemo infusion. Oh, and did I mention that her adult son, who was sitting with her, had just finished his own chemo treatments?

My teacher offered that what might be happening is I’m minding my own business, putting one foot in front of the other, managing this beast one day at a time, and then I end up in a place where I see a little sliver of someone else’s struggle and it triggers my own fear response.

Yeah.

Sometimes I notice people looking at me with what feels like pity. I imagine that perhaps it sometimes is the case. Mac tells me it’s not so much pity as it probably is sadness and fear plus unfamiliarity and distance. That sounds about right.

I’m doing fine-ish. This shit is terrible, but I’m okay-ish right now. I even just made it through an entire three-day chemo infusion with only one fit of tears. I’m keeping it moving, one clumsy, resilient step at a time.

That’s life, I guess.

 

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.

All the tears

I cry a lot lately. Silent tears. Ugly tears. Loud, heaving sobs that make my body ache. Tears of the fear of dying. Tears of the injustice that this disease is going to take me from the love of my life. Tears of discomfort. Tears of my deep hatred of chemotherapy. Tears of gratitude that there are still treatment options for me.

I cry because I resent that every moment of this diagnosis has been entangled with the evil of Donald Trump. I cry because it’s unlikely I’ll outlive his presidency. I cry because given half a chance I would hand this diagnosis right over to him. I cry because fuck him.

I cry because three days into my new chemo treatment, my anxiety levels were already as high as they were when I was at peak toxicity before. I cry because I had just let myself restart my wine club membership. I was so excited to drink so much wine again.

I cry because I feel alone. I cry because I feel so held. I cry because every now and then I get a glimpse of how many people are rooting for me, praying for me, holding me up. I cry because the other day I was walking down the street and a man I’ve never met told me he was following my journey and wished me the best.

I cried the whole ride to my support group yesterday, and through the whole breathing exercise, and after I cried through my whole check-in, those amazing people affirmed my experience, reminded me how terrible chemo is, how mood-altering pain is, how sometimes the only thing you can do is cry.

Then I promptly got back into the car with my baby and started crying again.

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.

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.