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.