How to Survive a Menty B breaks down medical trauma and illness-induced PTSD with me, a therapist with both PTSD and a Ph.D.
This is my survival guide, my survival story, and my survivor legacy.
How to Survive a Menty B is a library for people navigating the upheaval of medical trauma and PTSD. Each week, I explore a new topic and dissect the role of medical trauma in daily life and relationships.
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Chemotherapy: Round 1
Medical Trauma Journal
I’ve had a long relationship with journaling, beginning when I was 12. It’s been on and off, love/hate, a travel companion, analog, and digital (as a LiveJournal in the early days of the internet).
I had a daily writing practice firmly in place before I ever thought about breast cancer.
The following are excerpts from my journal entries after my first round of chemotherapy.
Friday 6/18/2021
I walked, did Pilates, showered, and packed my chemo bag.
Chemo: Round 1. Let's do this.
I feel as ready as I can and want to start.
I hope for the best, but I don't know what it'll be like. I'm just contemplating mortality, making people comfortable with my life, and thinking about how to manage it all.
I’ll focus on what’s in front of me, and take the medicine. I've got this.
I feel queasy and woozy. But I'm ok for right now. The day was a ton.
Saturday 6/19/2021
The day was long. We have an hour and a half drive to and from MSKCC for treatment. Those parts are easily taken up with podcasts or chitchat.
The first two and a half hours of the appointments were dull with long wait times. I had a lab appointment before I met with the doctor to get the go ahead on chemo. After that, we sat, drank water, ate snacks, and chilled with our phones. Then we finally got to the infusion room.
I was in a private room with a window to the outside. The room had a nice recliner chair for me and a couch for Matt. They have a TV set up where you can call your nurse, order things, and watch or listen to a selection of choices they have for you. The infusion rooms are a hallway with nurse pods right outside the door, so you are never alone but have privacy.
My nurse happened to be fucking incredible. Her name is Heydee. She was fun and funny, talkative, and made jokes. It lightened the mood. She did a great job of giving me the real deal on how I should take my meds and what to expect.
Then, she loaded up a giant ass syringe to insert into my IV but joked that it was supposed to go into my neck. I flipped my hair back and said “Ok” without missing a beat, and Matt's eyes almost fell out of his head. Then, we all laughed about how much of a badass I was and poor Matt, whom Heydee had already tricked about something else.
I felt ok getting the meds. A little nervous, of course. The red devil (adriamycin) came in 3 syringes she pushed into my IV while we chatted and made jokes. Cytoxan went in a little drip bag. All the medicine I had to take to survive those two got pushed or dripped into me too. One tasted like chalk in my mouth even though it went into my veins.
She used everyone's favorite vein, my juicy right elbow, but questioned why I didn't get a port. I asked Dr. Wang about one, and I still want one. She said that for my particular chemo, I didn’t need it, and it has its own set of risks. I hear chemo trashes all your veins, but I hope that’s not true.
Last night I had a headache and acid reflux and felt queasy and woozy. Not super bad, but like I had just walked off a rollercoaster, and everything was a little unsteady but still OK. Maybe pass out? Maybe collapse? It doesn't feel like it, but it wouldn't surprise me.
The steroids I am taking to mitigate some side effects made me anxious and super wound up with energy.
I got a medicine robot on my arm. It’s a sticker programmed to shoot medicine in my arm 27 hours after my infusion to help with my white blood cell count. Neulasta does this by making the white blood cells in my bones come out. To help with the pain of that process, they recommend Claritin, which sounds wrong, but supposedly actually works. I hope Claritin makes my bones not feel like they are leaking life.
I’ve noticed people are apprehensive about my hair falling out and I’m defensive about it. I don't think my head is ever an apology to anyone. I look sick because I am sick, and if you don't like it, don't look at me. That's how I feel about that. If I want to cover my head because it's cold or because I sometimes just like to wear wigs, it's because I want to, not because I am ashamed and embarrassed. Fuck that. I'm not hiding; nothing about how I look is an apology to the world.
It's ok to be sad about losing hair. I want to look normal. I get it. But the vibe I get from people asking about it can get a little, “Well, what are you gonna do to cover up your disability?”
“Nothing,” is the answer.
Sunday 6/20/2021
I slept so much yesterday that I can hardly believe it: big afternoon nap, evening nap, regular sleep. I still feel tired, but I went on my walk and did some gardening. I ate a small sandwich and took my medicine. I’m still doing things even though I have a ton of fatigue and get shortness of breath quickly.
I did have some bone pain this morning while walking. It felt like shin splints up my right side.
The steroids (dexamethasone) give me anxiety which feels like shortness of breath, but it’s just that trilly heart flutter. All the medicine I must take to tolerate the chemo has its issues.
Monday 6/21/2021
My bones on the right side hurt—Shin, cheek, shoulder. Likely from the Neulasta, but hopefully, that won't get worse.
Yesterday I stayed awake most of the day—tiny victories. Today I have a little more energy.
I did my walk, tidied up a bit, started laundry, and needed a sit-down. My mouth is dry, and I get winded. But I'm doing it.
I am tired and need breaks, and feel out of breath, and am constipated, and have achy spots in my bones, and my concentration is trash. Scrolling and reading are too complicated for me. But for some reason, I feel like it's supposed to be way worse, like I will be getting away with something if it's not miserably awful.
Perhaps it will be lurking to come back and get me as soon as I am safe.
I know it's not a good train of thought to be on. But it's in there. I hear it.
If this is easy, wait till next time.
And that's about the chemo rounds, or cancer rounds, or surgery rounds, or whatever I think I am skating through.
I'm not getting off easy, but I feel guilty about having an easier time than others. It's survivor's guilt in part. It's common. But I notice it.
Shame about my experience, fear of someone else's, and skepticism about the future.
And gratitude. And stillness. And the anxiety. It's many things.
And some are still coming. My hair will still fall out. I still have to lose my breast.
I wonder why I think I'm lucking out in any way here.
Tuesday 6/22/2021
I woke up and went for a walk immediately, which was tough. I felt super sluggish and heavy. I had a few sips of coffee but didn't want to carry it. When we got back home, I had a watery mouth all of a sudden. I knew I'd puke. I didn’t even make it to the bathroom.
I had some yogurt melts and am having a ginger chew. I don't feel great today. On edge, queasy. But it's ok. I can do this. I will do this.
Wednesday 6/23/2021
I tried to stay still and calm as soon as I woke up. I had prepped my nightstand with the supplies. The plan was to eat two saltines in bed, wait a minute, drink a little water, then get up and do my thing.
Instead, I puked 5 or 6 times.
I think doing cold water was the problem. I’d better do sips of room temperature water, slow and steady, then meds, then another cracker and glass of water.
Otherwise, I feel ok today. I did my walk and didn't have any bone pain.
Thursday 6/24/2021
I tasted metal today.
Wednesday 6/30/2021
On the way back from running errands, a handful of hair came out when I ran my fingers through it.
“Oh, shit,” was my first thought.
Then I felt excited because I planned to cut it off as soon as I got home.
It's happening! Embrace it!
I made little ponytails all over my head and went about chopping them off. And I was left with a pile of long blue hair.
I was surprised I liked the way I looked with no hair.
Same time next week?