I’d like to stop having a mental break down every day. My clavicle hurts from hyperventilating. My eyes are dry from forgetting to blink. My shoulders are sore and tense. And my stomach is in knots.
I had headache last week after chemo. It improved with hydration. They offered me home hydration, that sounded like it would help a lot. So I agreed. It was decided over the course of two days and a total of 5 minutes over the phone.
I made assumptions about what this entailed. And the prescribing team assumed I knew what I signed up for. Our expectations did not align, so it created chaos. Several things launched me into a tailspin.
First, there’s a lot of equipment in my home now. It looks like a very sick person lives with me. Second, the visiting nurse arrived with some hangry energy and I got the impression they were under pressure to be done quickly. The third thing that triggered my panic attack was that the nursing staff do not stay for the 4 hour treatment. Nick would be taught how to administer my IV hydration. And worst of all, the port stays inside of me from one day to the next.
The poor nurse spent ninety minutes arguing with us as I broke down.
I finally stilled enough to sit up for the hydration lesson. But it wasn’t calm. I just got tired and moved every emotion behind a glass door. The fear and anxiety watched me sit like an empty vessel. It was tempting to acknowledge the emotions. But I was exhausted by them. They often get in my way of getting the task over with.
The last emotion I interacted with before I got accessed was pleading. I touched Nick’s elbow before he started training and looked into his eyes. Silently, I told him I was fragile and scared, I asked him to learn it perfectly, I begged him to be gentle and careful. Then I swallowed and shut those feelings behind my glass door.
I don’t know if he understood all that in that desperate moment I tried to telepathically communicate, but the thing went smoothly. I’m proud of him. I was hydrated and safe.
(Lack of) Bodily Autonomy in Pregnancy
There comes a point in being pregnant where you stop being your own person, and you’re just a means to an end. Ideally, a team is there to care for your body and deliver the baby. But its not about you. This continues after birth; a postpartum body is just as subservient as a pregnant body. It’s just even more tricky because the baby’s on the loose.
This lack of autonomy struck me late in my pregnancy with George. I was tired of being pregnant in the last few weeks. I wanted it to be over and to have my own body back. This time I have not belonged to my own skin already for months. And I have many more pregnant months to go. Far longer when you realize my cancer battle extends well after my baby bump becomes my baby. I’m depressed by that thought.
Want more color to my predicament? Get this metaphor:
I’m a marionette’s puppet. I have a face, but no neck so I cannot direct my gaze. I have eyes to open and shut, but I cannot close my ears. I have limbs, but no hands to manipulate my environment. I have an abdomen, but it’s empty except for my bump. And I have a chest, fitted with a medical port. But none of my body parts are connected to the other. Each is suspended on its own string. If a doctor wants to examine it, they pull a string and draw that segment into a spotlight. When they finish, they carefully place it back so I appear whole. Each piece is considered in turn respectfully, gently. I am not mad at my doctor puppeteers because this isn’t a personal matter. I’ve come to them for repair. But the repair has me broken into pieces, and the work will take a long time.
Additionally, there’s more than one puppeteer. The health care system shakes my strings and my body clatters against the pieces and parts that remain. I jump when they yank, but maybe my doctor isn’t ready to catch me and set me down gently. So I get hurt.
The doctors and the system that employs them are two different puppeteers, and I pay the price.
I also mean that literally. The high deductible family plan I have is dumb. There’s not enough energy in me today to elaborate on American health insurance.
There are more puppet masters too. I have them take turns managing my body. I like my mental health team very much. They take good care of me. They give me time to shut my eyes and consider feeling like a person again. I think I’m scared to do that often though.
Sometimes I even get to play at puppet master. I went shopping for fun. But I was held back by how quickly my body becomes exhausted. I walked to the end of my street, and returned out of breath to crumple on my couch for an hour. I’m sad being my own master. It’s easier to just sit still and wait for someone else to drive. But if I don’t see them coming, then I panic.
Reflecting on this, I want to choose to do more things that will bring me joy. Presently I’m tucked in a dark cupboard, depressed, knowing that anxiety will come to take a turn to keep me company. It’s just tricky getting the hang of finding new safe things that won’t hurt me and being me happiness. It exhausting just planning to do fun things. But my counselor says it takes 6-8 weeks to get the hang of new ways of thinking. So I’ll just be patient. For now. And keep my strings neat and eyes open. And practice thinking about knitting or coloring or more writing.
I am really pleased by this post, despite my emphasis on depression today. Writing helps me. I drafted it while I sat in the infusion chair, but my thoughts were disjointed and incoherent. I’m impressed that I was able to conjure this up.
- Fun fact! Chemo brain is a thing. Just like pregnancy brain. They say they don’t know what causes it. But its obvious to me. Your brain is just so preoccupied going “WHAT THE HELLLLLL” that you forget to do things. Duh.
- Side note: if you need something from me, make sure you watch me write it in my calendar or rocketbook. Otherwise, you can kiss that request goodbye.
Thanks for reading today. Keep sending help. I got some much needed support after my last story. If you have ideas or suggestions, be brave and tell me. Maybe I’ve thought of them, maybe I haven’t. Maybe you’ll be the next thing that keeps me company instead of anxiety. (But also don’t text me after 9 PM, I’m too tired to have new information.)
Leave a Reply