Months ago, I told myself I would post every day while I was in the hospital, but I quickly realized that wouldn’t happen. I’ve been busy getting radiation, starting chemo and trying to wrap up some work items. At least this first week in the hospital has gone by quickly. As I mentioned, it’s strange to have a cut-off date when you know you’ll start to feel side effects, so I feel as if the window is closing to update the blog, have visitors and get other things done. My deadline approaches, so here’s a post on my hospital life this past week.
Radiation. On Friday, I wrapped up my week of TLI (total lymphoid irradiation), completing 20 total sessions of radiation. Last week, the lymph nodes in my neck were swollen and sore, but that’s expected. I’m told the glands don’t like the radiation. Later on, I will probably experience a sunburn type of skin reaction, as well as mouth sores and a sore throat that makes it difficult to swallow.
The worst part of the radiation, for me, were the measurements they took the Fridays before they started the radiation. It required staying still, in the body cast they’d created for you, for a long time. In both cases the time ran over the usual 45 minutes to about an hour the first time and an hour and 15 minutes the second time. I’m pretty good at being still for long periods of time, but I had to not move for about 15 minutes to half an hour longer than my comfort zone. And once you’re past minute one of that zone and have the fidgets, it seems like an eternity. Still, it wasn’t too bad. (And when they’re radiating your insides, I understand their need for precision.)
During outpatient radiation, I would trade my shirt for a gown, then lay down in my mold, while they adjusted my position on the table, darken my tattoos with a marker and make some additional marks. Then they would radiate the two portions where there had been residual cancer in my chest and belly. The machine would flip around and radiate the front, then the back. (It reminded me of the scene in Logan’s Run, where Farrah Fawcett is offering to give Michael York a facelift but someone messes with the lasers. As I’ve noted before, this film that I saw multiple times during my childhood really influenced my ideas of the future.)
My outpatient treatments were six hours apart, so I was never sure if I should go back home to Brooklyn or wander around looking for WiFi with my elderly (in tech years) computer that needs to be plugged in to get much a charge these days. I also ended up being on the train during rush hour. Usually, this wouldn’t be a problem for me, but I’ve been a hermit for a few months. And in stark contrast of how unfailingly nice everyone is at the hospital, I was ill-prepared for the cruelties of New York City at rush hour. I expect I’ll have to re-enter society slowly once I’m recovering from my stem cell transplant.
Inpatient radiation was much the same, though the set up for the TLI would take a bit longer, and I was wheeled down from my hospital room. I also sometimes had student trainees the last few days of treatment, not that this added much to the time. I was told they don’t get to see many TLI treatments so I’m glad my radiation was a treat for somebody.
On the first day, I was told I could pick a music preference or channel, but I blanked. I couldn’t think of anything appropriate, so I didn’t give them any suggestions and spent some time listening to classic rock, the Billy Joel channel and adult contemporary pop music, but it provided food for thought as I was radiated.
I gained a new appreciation for Adele. “We Didn’t Start the Fire” really doesn’t stand up to the test of time. Coldplay is still boring. I also heard a lot of John Mayer songs, and I don’t get why people like his music. I tried to spend one session trying to name all the starlets he’s dated, but the radiation treatments don’t last that long. I also tried to think of radiation songs, but I could think only of Blondie’s “Fade Away and Radiate.”
Food. My throat hasn’t started to hurt yet, I’m still free of mouth sores and my appetite is still OK. I’m on a Zofran drip, though I can tell there’s a slight rebellion going on in my digestive tract. As I’ve noted before, it’s a strange feeling of knowing the mechanics are a little off but not being able to feel the effects. It’s like seeing your tire blow out and feeling only a slight wobble but still being able to continue driving your car with no problems.
I’ve been trying to enjoy chewing at eating as long as possible, before I can’t eat. I managed to eat all my desired specials this week: Nutella crepes, Mexican bean soup, a Sloppy Joe, Asian vegetable soup, shrimp in garlic sauce and breakfast pizza. I also look forward to the afternoon tea service more than I should, because the tea arrives with a little pastry—a walnut muffin, a mini red velvet cookie with white chocolate chips, some of the best scones I’ve had in awhile.
The indigestion from the radiation and chemo has thankfully been my worst side effect so far, and I’ve been getting extra medication for that. I had the hiccups in the middle of the night, but they didn’t last long. I’ve been trying to stick to a soft diet of soups and cereals, but have been waylaid my some of the daily specials. Today I had a hot dog, but I have a plan of eating small breakfasts and dinners and a substantial lunch so I can digest during the day.
I hate seeing food go to waste to the point where I’m weird about it. With so many of the trays arriving with condiment packets—salt, pepper, sugar, honey—it was only natural that I would start condiment hoarding, in case I needed to dip into my stores at a later date. I had them visible on a shelf, but I realized my boyfriend would frown at them and throw them away while I am plugged into the wall and unable to stop him. I’m considering putting them in my room safe.
Oh, I’ve also been eating candy, though that’s probably going to come to an end soon. I am now in possession of two Easter basket of goodies, and another friend brought me a giant Reese’s egg. And someone else thought to combine the cat theme and the candy theme with Katzenzungen, German chocolates with pictures of cats on the box.
I also got a picnic-type basket filled with packaged cookies and cakes. There was a tense moment when the nurse wasn’t sure if the desserts were approved for me to eat or not, so I briefly considered eating as many as I could while she was gone checking. But they were not confiscated.
Exercise. If there’s one thing that’s been drilled into my head over and over again during my preparation for this stem cell transplant, it’s the importance of staying active. Or, at the very least, not staying completely prone in bed.
My doctor and nurses told me that when I’m not sleeping, I should sit it in a chair. Being flat for too long increases your chance for contracting pneumonia, so they want you elevated.
The doctor told me that I should also always sleep at a 30-degree angle, at least. With the adjustable bed, this is possible to measure, but my attempts have been only partially successful. If I sleep on my side and wedge myself in with pillows, I can maintain this angle, but I’ve woken up a few times flat and scrunched up at the bottom of the bed.
Right now, it’s the easy part. It’s going to be after the transplant when it’s going to be hard to get moving and find motivation to sit in a chair.
Though I’ve said this before, I’m naturally a sedentary person and, as much as I love working out, it really takes me a lot of motivation to do so. Once I stop moving for a period of time, it’s extremely easy for me to slip back into my natural sloth-like state.
Since I’ve been here, my counts have been up and down, so I’ve been allowed to do laps in the hall for only three days since I’ve been here. I’ve heard 14 laps is a mile, so I’ve been trying to do that, but I lose count.
Yesterday on my walk, I found the designated room where visitors can eat. I peered through the window from the hall, and a man was about to take a pizza out of box. I thought it would be funny to stand at the window, with my gloved hands against the glass, wearing my medical mask, but it’s one of those things you only think about doing, because it would also be weird.
It’s not the pole filled with bags of chemo that makes it strange to walk in the hall. It’s the mask. No one can tell when you’re smiling.
I did have one session of hospital yoga, and it was nice to stretch and get moving. Obviously, we didn’t do anything to strenuous, but the instructor had me do some seated positions. For as long as I’m able, I’d like to continue with the bedside yoga program, as they call it.
Chemo. I started chemo on Saturday. I get a big bag of etoposide that the nurses change every 24 hours. It’s bubbly—I was calling it the “Champagne of chemo”—so it was causing air in the line and beeping pretty often. Every nurse has a trick to make it stop beeping, and the third nurse’s fix made it stop for good, so that’s good, considering I have another day and a half to go. Also, I found myself addressing my beeping pump and telling it to be quiet, so I named my pump Wilson after Tom Hanks’ volleyball companion in Castaway.
I’m also on cytoxan, which can damage your bladder if it sits around in there too long, so I’m on a lot of fluids as well. So far, they haven’t had to give me a diuretic and they keep saying, I’m “peeing like a champ.” It feels good to excel at something, even if it’s just because I’ve been drinking a lot of water.
So far, aside from my nagging indigestion, the chemo has been OK. The worst part is set for post-transplant, when all the side effects are supposed to hit me at once.
Chest catheter. It’s my last three weeks or so with my trusty chest catheter. It’s been so nice to give my poor, abused veins a rest.
I’ve been worried that my cats or a stranger would pull out my chest catheter somehow, but it turns out that I’m my own worst enemy. Now that I’m hooked up to my chemo, I’ve stepped on the lines a few times.
Also, though I love the convenience of electronics, the notion of charging them irrationally feels like a terrible inconvenience. And now that my computer needs to be plugged in almost all the time, it irks me. So you can imagine how I feel at having to essentially plug in myself—or at least this medication pump that I’m attached to. I’m getting used to it, but I long to be free.
Accommodations and décor. This is my first time on the bone marrow transplant floor. I have my own room, while I’m isolated from germs. There’s a chance I might get moved to another floor and a shared room when I’m starting to feel better.
My room is nice, with drawers for my stuff and a sleeper chair, in case my boyfriend wants to stay over. There’s a computer, a TV, a bed and a few chairs, as well as my own private bathroom. It’s not a bad place to call home for a month, considering the circumstances.
My view is of an adjacent wall. It’s the first thing I noticed when I walked in. It’s not as nice as my previous views of the Triborough Bridge, but I’m not sure if I want to put in for a room transfer just for the view on the other side of the building. I have a patch of sky, if I look up. I keep waffling back and forth, but I think I’m just going to stay put.
I arrived only with my clothes, computer and Kindle, as well as my cat blanket, a cat toiletry bag and a cat totem—all gifts. Since then, the cats have increased, and I now have a book of cat stickers, a drawing of one of my cats that someone sent and cat get-well and Easter cards.
Yesterday, my boyfriend brought me a digital picture frame loaded with photos. Sometimes, I can’t imagine a return to “normal” life, and sometimes I don’t dare, in case I’m disappointed. Yet looking at photos of family and friends and so many happy memories has been more therapeutic than I would have thought, and it reminds me of the good things to come.
Even more cats!