My regim is simple. A round of chemo is one straight week-- 5 days of Bleomycin, Etoposide, and Cisplatin-- then two weeks of bleomycin. The bleo is administered on Tuesdays only so that means I only go in for one day the last two weeks. I am currently between the two bleomycin days.
What did it feel like? Initially it felt like being covered with a heavy wet blanket. Then another one would be thrown on, and then another one, and then another one, and then another one, and then I decided to take a nap. That was day one.
I also started out with the immediate metal taste in my mouth. Cisplatin is the culprit. That mother take about two hours to load into my body. Nothing gets rid of the taste at all. I thought it was purely psychological at first so I started sucking on some silverware.... oh, no. It was not psychological. Thank Buddha I had a boat load of wood chopsticks in the house. Plasticware also helps. But regardless it also shifted my taste buds.
Thankfully I'm a flexetarian. I prefer vegetarian foods but I also enjoy meat, I've just tried to keep it out of the house. Well no longer. Before I started this adventure I purchased a lot of soups... just on the off chance that I needed something quick to fix. I didn't count on the fact that my taste buds would change and I would actually hate meat and crave chicken and cheese. So it was back to the store. I started craving odd foods too: guacamole, cheese enchiladas, sour cream and cream cheese. I think it's a texture thing, but I couldn't get enough of this stuff. To give you an idea of how my taste buds changed, before this started I could not stand Coke Classic... especially with high fructose corn syrup. I could stomach the diet cokes, but that was it. Now that's totally reversed. I talked to one lung cancer patient who said she had not touched a drop of coffee since her first day of chemo treatments 8 months ago... she was a coffee-a-holic and now she can't even stand the stuff.
As the days pressed on I adjusted. But I began to notice something odd when I would wake up. My stomach would turn and do flips, I would be dizzy, I couldn't stand for a while. It would take me about 30 minutes just to get out of bed. I'm normally a person who doesn't ask for help, but I finally asked for it... I asked for my friend to stay the night because I wasn't sure what I would be like in the morning. I finally figured it out, I was nauseous. So I started taking the medication for that, and it helped. But it created different effects.
Now I felt hung over. Pure and simple. It was like waking up, still feeling a little drunk from the night before but you weren't tired, you couldn't sleep. You couldn't do anything because you were still physically tired and exhausted-- those wet blankets did not go away. But you couldn't think or read. I thought I would be able to get some reading done in this week, but no. It would take me about an hour to read two pages. I had lost all cognitive abilities to process and think. The only thing I was capable of doing was to watch TV. Thank goodness I got an iPad and loaded up season one of SNL. I would lay on the sofa and just try to watch episode after episode. If I was lucky I would drift off to sleep.
These feelings did not stop until the Monday after the first week. By the time I reached my second bleomycin day I was actually in a good spot. This week I'm actually able to drive to places-- but I still keep them short, and close by. I'm measuring things in minutes. Yesterday I was only able to sit zazen for 10 minutes before I had to lay down. Today it was 15 minutes. I can stand in a line for about 5 minutes before I have to rest-- my first trip to the coffee shop was me getting a table and waiting for the line to go down to one person so I could order; then I sat down again to wait for my drink.
It wasn't until a full day after I stopped taking the anti-nauseous medication that I was actually able to read. I'm still a little nauseous, but I can read again!
I have to say the psychological impact freaked me out a little bit. I remember reading about the psychological impact on chemotherapy patients and how they don't want to go back. And they are freaking right. I was so happy when I drove past the cancer center and did not have to turn into their drive. I actually started to shake a bit when I had to go back for my first bleomycin only treatment. I did not want to be there. I knew I had to go, but I saw my body reacting in a very negative way. I really view this as something akin to doing the dishes. I hate doing dishes, but it's something that needs to be done every day. So I do them. Getting my chemotherapy treatments is exactly the same thing... there are different effects, but it's the same attitude.
I also noticed I completely shut down by the third day. I just curled up in the chemo chair and did not want to talk to people. I just wanted to try to sleep and get through the treatments and I just wanted to get home. Let me tell you when I was done Friday I think the pump was still attached to me when I started to get out of the chair. I was so done with that place, I just wanted out.
Oh, you are attached to a pump. I didn't know this when I started. They pump the drugs through you. This makes for one of the most annoying things ever, having to go to the bathroom. Which you have to do about every 20 minutes toward the end of your session. You have to get out of the chair, making sure you don't snag your tubing; make sure you unplug the pump from the socket behind your chair; and then move all this stuff away from the chair without catching the cord or your IV.... all the while avoiding the people in the chairs next to you AND making sure to get to the bathroom in time to plug in again before the battery runs out. Then you have to reverse the entire process when you get back to your chair. Going to the bathroom was by far the most annoying thing about the entire process. I am not kidding.
Other side affects? Your skin becomes very sensitive to the sun. It feels like laying out on the beach just before you start to burn. And this is the normal, every day sun in April. Sure Spring is upon us. But there isn't that much UV out there. And it happens even in the morning sun when the UV is at it's lowest.
I haven't gotten mouth sores, but I'm doing what I can not to get them. Even though I'm rinsing regularly I can feel the lining of my mouth give way-- even the lining of my throat. My mouth is raw, but it's not a problem-- yet. One thing I have learned the hard way, I can't eat potato chips. They taste wonderful at first, and everything seems normal. But then my mouth will start to feel like sand. And there isn't anything I can do to remove that feeling until I eat food and process all of that salt.
The best part about chemo so far, my friends. Since I can't really do anything that I'm used to doing -- reading or computer work-- a simple phone call from a friend to tell me about their day means everything. I'm still me, I'm still awkward, but I'm very appreciative of the time-- more than you will ever know. I'm also appreciative of my friends who have helped out and brought food, and I'm also appreciative of my friends who sent care packages. But most of all I'm appreciative of my best friend who would cook me dinner every night, and then bight her tongue when I started cooking dinner one night. I like to cook for my friends, and I finally felt "normal" after a very long week.
The worst part about the chemo so far, bathroom breaks.
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