Hanging my toes over the side of the bed feels like a daring action — like I’m betting all of the germs in the room to grab me by the ankles and drag me to the the floor like the monsters in every horror movie I’ve ever seen. In my head, they’re giant oosing lava monsters with lazar eyes and boiling hands. This image makes the idea more entertaining, just for a fleeting moment. To me, this is easier to understand as a brain game. The floor is lava. The air is laced. Every door is dangerous. The water in the sink is poison. Picking my finger nails could result in a trip to the ICU. If something touches the ground, it’s immediately toxic. The bed in the middle of my room is my safe space, although there’s a special safe mat that I can pull out to protect me from the lava in case I want to lay on the ground. These are the new rules. A real life version of games I played on the playground in elementary school. Never in my life have things ever seemed so threatening; yet I’m taken back by the irony. Everything has always been dangerous. I’m just loosing my shield.
Nothing that touches the floor can touch the bed; especially anything on my feet or other people. Everything is lysol wiped down twice a day and every surface I touch has to be sanitized. All electronic devices are wipes down once a day, as well as any item I’m handed throughout the day by visitors. Even my books have been lysol wiped before and after entering the room, which I worry will ruin the covers. In the morning, when my nurse is cleaning my bed, I’m wiping myself down with a layer of antibacterial sticky stuff that smells just enough like soap to make me feel refreshed. So far, I’ve figured out that if I wash myself down with sterile water too, then I don’t stick as much in the places that count — although it has to remain on the rest of my body for protection. I’m incredibly grateful I went to Sephora before my admission — I have my own skin care. Just the feeling of the thick cream touching my skin makes me feel a little more human. Wearing contacts does too, although it’s slightly inconvenient. It brings me back to a sense of normalcy. These are the only items I’m allowed to use everyday — I get a new tooth brush and paste every morning. I’m not allowed to use the water that comes out of the sink, so there’s a latex glove taped over the tap to ensure that I don’t make a deadly mistake. Instead, I get supplied about a gallon of sterile water a day that I can use to wash my hands and body. I’m not even allowed to drink tap water — the nurses on the floor make me special ice for my drinks.
When I go outside my room, I have to wear a mask, but I have not been outside my room very often because I’m limited to a strip of hallway where the air is filtered. Once already, when there was a storm and the pressurized door didn’t work for a few minutes, I have to put a mask on inside the room to protect me from the unfiltered air. Sometimes when people come to see me, they’re also wearing masks, but most of the time they just put on gloves. All of the medical staff wear gloves when they touch me, and I am not rarely allowed to touch anyone. The only two people I’ve touched in the last week have been my mother, hugging me gently before going into surgery, and my boyfriend, when we were alone on Wednesday and he held my hand after my first dose of chemo. Human skin feels like a dangerous game.
Everything in bone marrow transplant world is strange in its own particular way. Most of the time, my nurse hands me a small medicine cup filled with lots of pills and I take them all at once, even if it makes it taste worse. Some of the medicine goes into my port, which is on the right side of my chest. These are the most normal medications that I receive, but sometimes they’re different. Twice a day my nurse comes in with a syringe of white, sticky stuff (that’s supposed to protect my liver) that I have to shoot down my throat as fast as I can before it hardens in the container and the nurse has to remix it. Three days ago, a woman came into my room with a massive plastic bag wrapped over an air filter and asked me to breath into a tube that tasted like chemicals for 20 minutes in order to protect me from getting pneumonia. When I got my first shot of chemotherapy, they brought it in a special neon yellow plastic bag with a toxic symbol on it that certainly achieved a dramatic effect. I asked the nurse lots of questions, is this going to hurt? I asked. What is it like? But she said she didn’t know, so I made another nurse come into the room and hold my hand. Immediately I started crying, not because it hurt at all (because it didn’t in the slightest), but because I knew what it was.
Lots of people come to see me. Most of them are therapists: music, massage, occupational, physical, and psychological. Doctors come and ask me lots of questions in the morning, but then rarely return. I have social workers, nurses, and a whole squad of cleaning ladies. Whenever someone comes into the room to bring me food, they shrink back from me as much as possible, unsure of what they can touch. I understand this; I’m not quite sure what I can touch too. There is little privacy here; doors do not lock. There’s someone in my room every hour on the hour starting at around 4am until midnight all day. I try to learn all of their names to the best of my ability. They’re still people, even if they’re new. Someone to talk to. The lack of privacy has been my biggest adjustment. I went from living alone completely to being watched 24 hours a day; having my own bathroom to having nurses measure my pee every couple of hours. No showers. No baths. Everything checked and double checked before I touch it. I’m not going to pretend that it’s pleasant.
Yet, I am also entirely fascinated by this new reality of mine. While it’s the most strict place I’ve ever lived, it’s also the most humanizing in the sense of complete simplicity and emotional intimacy. Here, there’s nothing for show. There’s no makeup or clothing or materialism. There’s very little to talk about but the past; a place that you should never live in completely, but you can learn a lot about people by visiting once in a while. It’s a humbling place, all things considered. It’s serious, but light & people smile at me when they come in the room (most of the time). The walls are yellow and I’ve got a big window that looks out into the clouds, just enough to watch the storms rumble through. I’ve been in hospitals enough to know that the most peaceful time is right in the morning, after the nurse has woken me up at 4am and before breakfast comes at 9am, when there is nobody around to ask me questions. This is an adjustment, but it is temporary & I am very much at the beginning. All I can ask of myself is to be patient and grateful to the best of my ability. If anything will get me through this experience, it’s certainly my mindset.