You know that feeling of sitting in one position for too long and your body just wants to scream? That’s what it feels like. Trying to sleep after a mastectomy is a struggle to say the least. My friend Amanda tried to help me out and gave me this block system that would support me sleeping upright after surgery, but as I laid there on night I-don’t-even-know-what, the one under my butt had slipped down and I was sunk in too far.
The one behind my head was too far down and my head was tipped forward. Normally I would reach up and adjust it myself, but right now I have to use “t-rex arms” and can’t reach anywhere over about shoulder height. I remember looking over at my sleeping husband and thinking, “I could wake him up and he would absolutely help me fix all of this”.
It’s a whole process when you can’t use your arms to do anything. He would get out of bed and come remove the block under my butt and the one behind my head. Then I would slide my legs around the side after he moved the ones that are supporting my arms. I would carefully step down onto a stool and then my feet would finally reach the floor. He would adjust all the pillows and blocks back to where they are supposed to be and then I would climb back up onto the bed like I normally do. He would support me as I basically free fall back onto the whole thing and hope for the best.
The Problem With Trying to Do Everything Myself
At this point I was managing my pain medication on my own and I thought it would be really nice if he could just sleep. He had been doing everything for me. Refilling my water bottle. Helping me in and out of bed. Moving things I couldn't reach. Keeping track of the things my drugged-up brain absolutely could not be trusted to remember.
Waking him up because my pillow was annoying me felt unnecessary.
Surely I could handle this one thing myself.
And I had to pee anyway.
So I used my elbow to push the pillows to the right side of me off the bed. Without those there, the rest of the blocks didn’t really have to move in order for me to get out. Moving everything else was more about convenience than necessity.
The only problem was the stool next to the bed.
Sitting on top of it were all my little pre-labeled pill containers. The ones I was taking every three hours to keep the pain at bay. Because a bilateral mastectomy and oophorectomy are no joke.
Thank goodness for the nerve blocker those first couple days and then the ongoing pain meds that my husband made sure I was right on top of after that.
I’m pretty lackadaisical about pills most of the time.
My husband is not.
So we put him in charge of keeping everything on a regular schedule. Also, I was loopy af those first couple days and absolutely could not be held responsible for my own care. Thank goodness someone else was there.
Except I was trying very hard not to wake that someone else up right now.
As I pushed the pillows off the bed, I heard them hit the pill containers on top of the stool.
They clattered down onto the floor.
Perfect.
Now the carefully organized medication system my husband had created was scattered across the bedroom floor and had become an obstacle course for me to maneuver around. In the dark. With no arms.
But I had committed.
I slid my legs over the side of the bed and took my first step onto the stool.
A Little Independence After Mastectomy Surgery
I was free of the block cage and ready to make my escape to the bathroom sans help. I climbed down and out of the bed, handled my business, and then checked the drains.
Did they need stripping right then? Probably not. But at this point I was already breaking the rules of my confinement and I was feeling pretty empowered. I wanted to do it on my own if I could. After a few days of someone being there to take care of my every need I wanted to steal back some of my independence. In a moment when they didn’t know it was happening and couldn’t give me that look of, “you know that’s what I’m here for”.
So I grabbed the rubbing alcohol and the cotton swabs and started stripping. It was the first time I had done it on my own and it was weird. At this point it was still early enough on that it was pretty dark in color still and fluid-like, which made it easy to keep moving. I moved as much of it from near the skin of my ribs to the drain and then dumped it, measured it, wrote it down, and re-squeezed it so that it would continue pulling fluids out of my body.
There was something ridiculously satisfying about doing it myself. For days, everything had required help. Getting into bed. Getting out of bed. Taking my pills. Moving pillows. Reaching things. My entire world had shrunk down to a collection of tasks that I normally wouldn't have thought twice about and suddenly couldn't do without another person.
But I had gotten myself out of bed.
I had peed by myself.
And now I was stripping my own drains.
Look at me go.
The Challenge of Getting Back Into Bed
Then it was time for the next challenge: Getting myself back into bed.
I walked back into the room and turned on my dimmable light. (This little light has come in clutch so many times, 10/10 would recommend.) I picked up the pill containers off the floor and put them back on the stool top. I moved the blankets to the side and pulled everything off the bed so that I could figure out how to put the blocks and pillows back together.
It was in this moment that I realized that I have seen my husband do this part so many times but I hadn’t actually paid that close attention to what he was doing. Because he had me. The blocks have multiple angles of triangle, cube-like shape, and more. And I was at a loss. I really didn’t know which side of which block went where.
“I’m going to have to wake him up.” I thought.
“No, you can figure this out”. I responded to myself.
And I started putting blocks together. Putting one block here and another there, hoping for the best until something came together that generally resembled what my husband normally created.
Now, to get into it.
Without my arms.
In the middle of the night.
After turning the light off.
I decided to grab my cell phone and use the flashlight on it to get into bed. I climbed the steps on the stool being careful not to knock over the pill containers. I stepped onto the bed and turned around to put my butt toward the throne of blocks and pillows. Scooched back as far as I could and aimed for the crease where I needed to land. There is no gentle way to get down that far, so I put my t-rex arms to my chest and free-fell down, landing a little cock-eyed, but overall, not too bad.
Sometimes Independence Can Wait Until Morning
Apparently, my freefall to the bed wasn’t very delicate though. Because after all that, my husband was awake and asking, “are you alright, do you need anything?” And thank goodness for that, because I really didn’t know what I was doing with those blocks. The one behind my neck was in the wrong place, I was tipped to the side, I couldn’t reach the blankets to cover myself up again, and it was time to take my pills. Announced by the dinging of my alarm as I sat there on my throne. Something I had forgotten to even check in all of this.
Tim climbed out of bed and came around to help me with my pills. He noticed that I was sitting crooked and that the blankets were off of me. He didn’t say anything, just offered a hand and helped me out of bed. Put the blocks back together the right way and helped me back in.
So after spending however long breaking myself out of the block cage, stripping my drains, scattering my medication across the floor, reconstructing an orthopedic pillow system I clearly did not understand, and launching myself backward into bed in the dark, I had accomplished exactly what I had set out to avoid.
I woke my husband up.
And he fixed the blocks.
And handed me my pills.
And pulled the blankets over me.
Turns out independence could wait until morning.