Saturday, March 30, 2013

Week 1: Humor and Self Pity

The new hospital is not the old hospital. Here are some things I have been given as chores:

This is, quite certainly, molasses. The first ingredient is beets. It smells and looks like molasses. I love the smell of molasses, which is fortunate because I have to make a warm water bubble bath with this and sit in it for five minutes, twice a day. They gave me a little butt tub. I laughed.

I will call her Nemo

This is meant to help me avoid mucositis, a sometimes side effect of chemotherapy.

Cisplatin is most dangerous to rapidly dividing cells, like cancer cells, the cells of mucous membranes, and white blood cells. The inside of the digestive tract is lined with mucous membranes, but how molasses is going to help all that is a mystery. Joshua says it's for the ill vapors. Maybe they like molasses and come out when they smell it?

Upsides: It smells like molasses and it is warm. At home, the space is comparatively luxurious and I don't mind at all.
Downsides: The shower in the hospital is in the hallway; it is shared by everyone on our end of the floor. It's tiny and gross and there's this little cube of space that is just barely big enough for me to put the tub down and sit in it (kind of).

Also, the water in the shower is cold. Radiation can affect the skin and hot showers can aggravate those problems. My radiologist said my skin will not be affected because they're using high frequency radiation and so I shouldn't have problems. Maybe other people on my floor get lower frequency radiation and so not-even-tepid water is all that we're allowed. Maybe nobody has bothered to ask why the shower is so damn cold because they feel sick, and grubby from not taking enough showers.

don't say 'gland-o-med'
Next up, mouth wash. Another place where the mucous membranes can get infected is the mouth. Mucositis is avoidable, and I'm unlikely to get it, but keeping clean is one way to increase the likelihood of my not getting it. This is some special mouthwash unlike any mouthwash you all have ever experienced. There's no alcohol or menthol, it has a kind of soft flavor and they call it orange. Swish for 2 minutes.

Upside: It's not that bad.
Downsides: The worst flavor comes after you spit it out. Then you have to wait for 15 minutes before you can eat or drink anything. You cannot rinse your mouth with water. Just gotta suffer through it, and it makes me want to retch a little. Best if used after each meal, but at least twice a day.

The cream. The nurses told me that I should take it home and tell them I'm all out and get more because it is The. Best. Cream. You can use it on your face, neck, body, hands, feet, everywhere and it's awesome. This is also supposed to help reduce any skin problems associated with radiation (which I'm not supposed to suffer from). But cool, I'll take it. There is no downside. It smells neutral. I can use it as often as I want, EXCEPT one hour before and one hour after radiation treatments. Why? Because it can increase the effect of the radiation and have a negative effect if used too close to treatment times. What is this stuff?

Deep breath, the pick line. Sorry, this one is just a little tough to stomach. I'm already planning my escape. This required minor surgery and it hurt a bit and it was only local anesthetic and I wanted to be sleeping. It is a little tube that goes into my arm and then into a vein and all the way to almost my heart. I saw the x-ray; there's a tube in me. I sure don't like the idea of this and the reality is even worse.

I get this fantastic modern medical miracle because chemo chemicals can do damage to veins. They did the first round intravenously, but going forward I get chemo straight to the heart. Ouch. I mean, my heart is arguably stronger than my veins. Buuuuut. Oy. Okay, so it's a good idea, the right idea. Miraculous. The thing is, I kind of hate it.

Upsides: It's held securely in place so I can't really pull on it and fuck everything up. It's also above the elbow so I should be able to move my arm like normal without anything bad happening.

Downsides: There is a dongle hanging off my upper-inner arm that is connected almost to my heart. It is taped with clear magic sticker that does its job well but makes my arm look gross and saggy there. They used iodine on my arm so it's all kinda reddish, which looks unnatural. Joshua can't hug me without me cringing and trying to fling my arm aside. It makes showering difficult. It's a constant reminder that I'm sick and need serious medical help and soon I'm going to have to go back to the hospital for more poisoning. I worry about it almost constantly. I worry about it in my sleep.

Dear doctors. You guys are great. You're doing a good job. But I need to be able to take care of myself. With only a cold shower, I don't want to wash or do the butt bath. I especially don't want to do it in a shower that I share with the rest of the hall. A constipated person (side effect of chemo) is never going to be able to poop in a toilet that they share with the whole hall, because the hall mates need the bathroom too. We all interrupt each other by trying the door handle and I always have to wait to use it, something that makes me afraid of the possibility of diarrhea (side effect of radiation). I'm not comfortable squeezing around my roommate's bed to get to our shared sink to use my mouthwash and brush my teeth. Not to mention we can't open our closets all the way because there's not enough space in the room for two beds and two bedside table carts.

Joshua and I realized that there's a difference in hospital stay mentality here, and it is a good thing. To us, a stay at the hospital means something must be seriously wrong. Right? I mean, it has to be really bad for them to keep you at the hospital. But here, it's not like that. You stay in the hospital so they can take care of you. Staying overnight after a minor surgery, like having a pick line installed, is normal because they just want to be sure nothing goes wrong - or if it does, they're there to handle it. They want to be able to give you medication if you need it. That's pretty nice and not unreasonable.

At Westend, after surgery, I was totally happy to stay at the hospital. I had a nice room with a bathroom and a view out the window to trees and a clock tower. The nurses were attentive and kind (mostly). If I buzzed, someone would come to see what was up. At this new hospital I buzz and then someone asks me what I need over an intercom. I need a nurse, surprise! The room is tiny and I share it with someone else. The bathroom and shower are in the hall and shared with lots of people.

And oh my goodness the food is so bad. I was nauseous anyway, and the food made it so much worse. I couldn't really eat. Even thinking about it now makes me want to toss. The doctor in charge of the floor, a young, friendly, kind, present, capable guy who I like a lot, asked me why I didn't want to stay over the weekend. I said I wanted to be able to eat. He apologized and said that, yes, food is a problem but their contract doesn't expire until next year. The doctors are all a little surprised that I've requested to go home as much as possible. They must think I don't want to be taken care of. I've been thinking about it and I have a bunch of other things to tell him about why I would rather be at home.

I'm also planning to demand that they take out this pick line when I only have two treatments left. One in the left arm, then one in the right arm, intravenously. I want to be able to cuddle without feeling like a 13 year old in an abstinence only education program. Neerrrrvvooouuus. There may be medical benefits to the pick line, but the real-life downsides are unacceptable.

But hey, week one is over. Only four more weeks of chemo to go. I'm 1/5th, or 20%, done with chemo. It did make me feel sick, but the meds helped. It also makes me tired and weak and blah, but I figured out that good, fresh, crisp apples can cure just about anything. If I'm on a fruit diet for the next few weeks, I think that'll be okay. Fruit and peanut butter. Mmmmm. In other good news, because it's Easter this weekend we get both Friday and Monday off. My first two weeks of radiation are 4-day weeks. I am into that. It's Saturday and I feel a lot better; maybe tomorrow we can find some nature to look at.

I also want to acknowledge the power of self-pity. Self-pity is the perfect emotion when you know you deserve it. And the more you feel it - or try to stop yourself from feeling it - the stronger it gets. I'm indulging in my self-pity. I feel awful and there's very little that anyone can do to make it better.

Sometimes, crying is the best thing to do. It's kind of like finally vomiting when you feel nauseous - once you get it out you feel better. I have not needed to vomit with this first round of chemo, although I thought I might a couple of times. But crying... yeah. And it feels alright.

Joshua is doing the best anyone can, and that helps. Also, thank goodness for surprises in the mail and house plants and flowers.

good thing about this guy


  1. Pears and almond butter here. They have my dose dialed in after 4 blood draws and labs yesterday.

    Are you walking the halls, doing laps. I gets the juices flowing. I am trying to keep up my two mile/day.

    Hang in there Kiddo.

  2. I'll say also " Joshua hang in there!" No matter how cute you frame it it sounds not fun, to say the least. But of course, when it is you who it's "suffering" you can joke all you want about it, so YAY! In the meantime, I'll keep reading, swallowing and sending you flowers!, besos, Rennea