Rituals
How to Stay Human in Hospitals
“Are you ready for your bath?” The nurse turns on the computer and scrolls through my chart, “It looks like you haven’t used your wipes yet today.”
I groan and turn my body to face her, “Shouldn’t I wait until this is done? I’m not sure I could get out of this shirt even if I tried.” I motion to the IV drip connected to the double broviac in my chest. This is the typical method of IV insertion for bone marrow transplant patients, although some doctors prefer a port, depending on the dose of chemotherapy a patient is receiving.
A double broviac is surgically implanted in the chest and has two IV lines that can be used to send medication directly to the veins in the heart. This is different than a port, because it is constantly present and cannot be covered up. A port, on the other hand, can be covered by the skin for periods of time when it’s not being used and then ‘accessed’ again. All things considered, I didn’t mind my broviac most of the time — it meant I was poked a lot less. The only thing I despised now was the process of ‘showering’ and the knowledge that once I went home, I would be responsible for cleaning it every day — just another way I could accidentally kill myself.
She raises her eyebrows at me. “That’s what you said this morning too.”
I smirk. I like this nurse. I’ve also had her enough times at this point to know she won’t take my bullshit.
“I can help you,” she finally says. “I do have to change out your bedding before the end of my shift too. I can do that while you’re in the bathroom.”
I nod and swing my legs over the side of the bed, careful not to tangle myself in the IV wires and not to touch the floor. I’m wearing a loose T-shirt and pink athletic shorts. She leans over me and begins to untangle the wires; saline solution, morphine, and a bag of immunoglobulin that’s been running for at least five hours. I change from my ‘bed socks’ to my ‘floor socks’ and waddle over to the bathroom with her in tow. Immediately the IV pole starts to beep; concerned that I’ve somehow blocked the IV from giving the medication — specifically the immunoglobulin, which has a tendency to bubble up and get stuck in the tubes. My nurse shuts off the machine and sighs, handing me the wipes, a couple of towels, a floor mat, my new tooth brush, and a gallon of sterile water with a wash basin.
I shut the bathroom door. I know the drill. It’s been two weeks and my transplant is just days away. Today was a break day from chemo; tomorrow the last round begins. Then, I get my stem cells.
During a bone marrow transplant, depending on the policies of the hospital you’re admitted to, certain things are done to limit contamination to the vulnerable patient. For me, this included a plethora of limitations. I was not allowed to leave the room without wearing a mask or leave the floor for any reason. This was soon restricted to not being allowed to leave my room for any reason (although there were two ‘field trips’ over the course of my admission for scans).
The door to my room was air pressure locked and never left open. If someone came into the room from the outside, they first had to wash their hands with Lysol and then wipe down anything they brought into the room with antibacterial wipes so strong gloves were required to handle them. During the entire admission, I was only permitted to have five total visitors on a specified list (who could come as often as they liked). Each person would then have to stay on the other side of the room, sitting on the couch, or wear a mask and gloves if they got close to me. I was not allowed to touch any visitor for any reason during the admission. This included my parents when they visited on the weekends and my partner, who held my hand as often as he could (while wearing gloves, of course), but still struggled with his inability to touch my skin.
I was not allowed to use water from the faucet, only sterile water, which was brought to me in gallon jugs and kept in the bathroom. This also included any water I drank, right down to the special BMT ice kept in freezers on the floor. Every day I was given a new tooth brush and tooth paste. I was only allowed to order certain foods because I was on a special antibacterial diet. Everything had to be made and eaten in 30 minutes. Everything was extensively washed and nothing was raw. Everything was cooked twice. I was not allowed to eat fruit with skin and had to avoid certain kinds of cheese. To this day, I am still not allowed to eat raw honey or fish.
I was not allowed to touch my skin to the ground in the room for any reason. I always had to wear socks. I had a separate pair of socks for the floor and for the bed. If one touched the other they had to be switched out. If I dropped any item (bedding, my phone, the chord from a charger) onto the floor I was not allowed to pick it up. I had to call a nurse, who would then sanitize it and hand it back to me. The absolute worst instances were the few times my favorite blanket fell on the floor in the middle of the night, leaving me without it for a day while it was washed.
If I did want to stretch or move around in my transplant room, the nurses would bring in a play mat for the floor and Lysol wipe it down for me. Sometimes I would do this and position the mat right in front of the window and stretch out like a cat; basking in the sunlight. I would close my eyes and pretend I was laying in a field somewhere. Eventually, my partner surprised me one day by bringing me a set of VR goggles so that I could have the full effect.
“You can pretend to be outside now,” He said, handing them to me. “Anywhere you want in the world. Even if you can’t be there.”
I turned the goggles over in my hands and immediately burst into tears.
You can pretend to be outside. Someday you will be again.
“Kathryn?” I hear the nurse scan her card into the computer as she leaves the room. “Call me if you need anything, okay?”
“Okay!” I say loudly through the door. I hear the door to my room shut and exhale.
I set everything carefully on the counter and look in the mirror. I don’t think that I look absolutely terrible — yet. My experience with chemotherapy hasn’t been completely awful thus far, although the doctors assure me that most patients started to feel it in the days after the actual transplant, when a patient’s blood counts dip to zero. I am still grateful that it hasn’t been awful.
I’ve managed to keep my skin healthy and moisturized, despite the poison I’m receiving via IV. I’ve lost weight, yes, but not drastically. I can feel my muscle tone beginning to fade; the muscle in my thighs draining away as the days go on. Overall, though, I don’t think that I look bad for someone getting chemotherapy. In fact, much to my displeasure, I still have most of my hair — or what was left after I shaved my head. I am eager for it to fall out; get it over with. Once it’s all gone, then it can grow back again.
I strip myself naked and lay out the bathmat on the ground before removing my socks, mindful not to let my bare feet touch the floor. I stumble backwards a bit, unable to keep my balance, but catch myself. I know this is a sign that I am deteriorating. Every day I lose a little more balance and it becomes more and more difficult to take off my clothes. But still, I will not let the nurses help me. Not yet.
I have mixed feelings about ‘showering’ in transplant world. On one hand, this is the only time during the day when I am alone, even a little bit. Despite the fact that I dislike what bath time entails, the privacy makes it a sacred space. Occasionally I’ll find myself just sitting in here for a solid half hour, not doing much of anything, with the door closed. I would often listen to a podcast and try to pretend that I was in a normal bathroom, somewhere else, living my normal life.
On the other hand, this rarely lasts for very long and the entire process is uncomfortable. Showering consists of being handed two kinds of wipes that are unpleasant in different ways. The ‘bath’ wipe, which is heated up beforehand and smells like soap, and another antibacterial wipe, which leaves a sticky residue on my skin. I first cover myself in the bacterial wipes (one for each limb) and then use the bath wipes everywhere else, before throwing everything away. It didn’t take me long to figure out that if I followed the sticky wipes with a wet rag, I could minimize the stickiness from the bacterial wipes, although I’m not really supposed to do that because it removes some of the antibacterial stick.
Some breaking of the rules is necessary though — not for my safety, but for my sanity.
When you’re immunocompromised to the point of having no immune system, even the tiniest bacteria in the water from a faucet or speck of dust in the air can kill you. I often feel as though I am playing a game on the playground from kindergarten; the floor is lava. Navigate back to your bed without touching the floor and you might just live to see tomorrow. Yet to be completely contained within a bubble, safe all the time, seems to forget the point of the treatment altogether — to live a life. And life can only be safe to a certain point without losing sight of itself altogether. And so I cheat to keep myself alive.
At the very end of my routine, after I’m fully covered in sticky residue and sterile water, I finally get to my own little part in the process; the only part that I enjoy: my skincare routine.
I first got into skincare after a particularly bad hospital admission in December of my sophomore year of college. I’d had a long admission, three weeks, and afterwards, my skin was an absolute disaster. The hospital air and high doses of steroids had not only dried it out but left it sore and cracked. I had breakouts of cystic acne around my mouth and a puffy red steroid face. I was miserable, not just because I was sick, but because I felt dehumanized. I felt greasy and ugly and bloated. My body had lost all its muscle and the skin on my legs hung off my bones like broken wings. Because of this, I went back to class that January in a wheelchair, which meant my hands were often covered in mud from navigating the wheels through the inches of snow and ice. I was constantly sweaty; always itching at myself or picking at something on my face. I was miserable and, despite my parent’s denial, I was dying. Something had to change.
One night in my dorm, after a long day at the hospital, I stood in the shower and decided to really try to get myself clean. I scrubbed off the left over sticky residue from the bandages and washed my hair for the first time in weeks. I shaved my legs and rubbed lotion all over my dry cracked skin. The cleaner I was, the more I began to feel human again. I started to think about how nice it might feel to actually invest in some nice skincare. After doing some online research, I discovered a number of brands that were focused on clean beauty — less chemicals and more environmentally friendly (all for quite the fee, of course). But even as I looked at the price tags, I decided to reframe my priorities.
I’d almost died. I was sick and miserable and my body was out of my control. I couldn’t ignore it anymore. My skin was an important aspect of my health that I’d been neglecting — the skin is an organ too. I needed to take care of myself; not just by taking pills and injecting myself with medications. I needed to think about everything; be nice to myself for once. I needed to be comfortable in my skin again — or at least try.
That night I bought everything I wanted at Sephora and had it shipped to myself at school the following week. At first, I felt silly. I tried different creams, lotions, and oils that people had suggested. I bought various sunscreens and masks. But slowly, I began to see real changes. I found products I liked; things that made me a little less miserable. I became obsessed with a French skincare line and fell in love with Drunk Elephant, a clean and environmentally friendly skincare brand. I started trying out makeup again; found products I liked and wore them regularly. I also started to feel like myself again. A little less miserable; less critical of my image in the mirror. I was treating myself well and doing my best. I realized that’s all I could ask of myself.
Needless to say, I was completely obsessed and I carried this obsession into bone marrow transplant. I asked my doctors for recommendations about what I could and could not use; doing meticulous research to find out what would work best for chemotherapy. On my first day of the admission, I showed up with a whole basket of green, clean skincare products, lots of comfy clothes, and a stack of books.
This time, I was ready. I was going to keep myself human.
This is where medicine and the quality of life of the patient have ramifications for health; the little things become meaningful because they must be. When you’re literally pulling the dead, black hair out of your scalp and your blood has been burned out of you from the inside, the only thing tethering you to yourself is sometimes the simplicity of material things like skincare. Giving patients agency over these small details are massive indicators in quality of life and outlook. When you feel clean and healthy, you are more willing to get out of bed in the morning and take the right medications, which can add up to massive differences in recovery time and future mental health outcomes. To me, these skincare products weren’t just about saving my skin (which they did and continue to do). They were something about my health I could control; something for me. Something to help me save myself. In a ten by ten room with no escape, the little details of life matter a lot.
Everything suddenly matters a lot.
I slide my floor socks back on and open the bathroom door. The room is dark and vacant, although I can see the nurse sitting right outside through the little window in the corner. I sit back on the bed, switch from my floor socks to my bed socks, and carefully snuggle myself back between the sheets of my bed. I cover my head with them and breathe into the cavity I’ve created for myself in an effort to heat myself up. The only sound is the hum of the monitors and my labored breathing for many minutes. I enjoy this. It’s simple.
When I finally peak out from my covers again I turn my head toward the window.
I can see the rest of the city — the July heat rising off of the pavement and cars driving by on Livingston. I can see the sky more than anything; clear and faded into the horizon line.
I turn on my side and run my hands over my skin. It’s still soft — practically poreless. But most importantly, it still feels like it’s mine.
