Saturday, July 24, 2010

Day 80

So it's been 80 days. That's not even three months. It feels like a year. The hard thing is when people say that chemo will only last three more months...and that seems like such a long time. By Halloween I will be done with chemo and on to radiation but at this point that's like talking about the next millennium or something.

I have to say that this chemo round was better. Not fun, but better. It didn't start out well. I waited an hour and a half to see the oncologist--usually you just see the nurse. At one point I went outside in my gown, untied, and said "hello!" I think they had forgotten about me. The doctor saw me for literally twenty seconds. He looked at me and said, so you're fine, right? I said well, not really...I didn't sleep for a week. He just looked at me blankly and said, but no major problems, right?

I had no idea what to say to that.

Apparently the only thing that matters to him is that my numbers were fine--white blood cells, etc. I did have one number that was slightly anemic, but they weren't too worried about me. So on to chemo I went. I have to say that even though I was annoyed at everyone's attempts to say I had random things wrong with me, I really, really like this nurse. She put that iv in there like it was nothing. For that alone, I want to keep going to her. No port! Plus, the adriamycin is so toxic that if it gets into your skin, it can necrotize. So you need a good person to push that into you (two huge syringes of red koolaid looking stuff--they push it right into the iv, no drip. another reason to not have a port--imagine having someone push that into your chest!) Also I think she felt really bad for me and for my sleep issue but just didn't know what to do.

I asked for a printout of the meds that went into my iv, and I'm really glad I did that. Before chemo, and on the two days after, I take this emend pill for nausea. $100 a pop! Then there are the two chemo drugs themselves, along with five other drugs in the iv. After chemo, you have to take steroids for a few days. So when I walked into chemo the first time, with a banana and a piece of toast in my system, I walked out with 9 drugs in my body--two of them poison.

Any wonders that I had some issues?

This time, on the printout there was an X by ativan (lorazepam). I asked if they gave that to me, and she said no, since I didn't like it last time. I think that drug was a killer for me. Also, interestingly, they had my "ideal weight" listed on the printout as 126 pounds. They have my height as 5'5". Did they just decide that was an ideal weight for me or what? I haven't weighed that since maybe the winter. So at 113 I was dosed down and I think that made a huge difference as well.

Because I slept. I was nauseous within two hours of chemo and just felt awful. BUT. I slept pretty well Wednesday night. The last few nights have not been so good--three and a half hours a night, maybe. But that was with taking nothing, not even melatonin, and it makes me feel so much more human just to have that much sleep. I apparently just feel these drug effects immediately. Rather than 5-7 days to feel bone pain with the neulasta shot Gabe gave me Thursday, I felt it within 12 hours.

So sleep has gotten better, but other things have become more annoying. On the one hand, I am SO glad I buzzed my hair off. Hair loss is traumatizing not just because of the identity that goes with it and the way it makes your cancer experience so public. It is also just plain disturbing. Remember, you lose ALL your hair on this chemo. Imagine losing hair every time you go to the bathroom. When I scrub my head, little buzzed hairs fall out, and my scalp stings when I lie down on a pillow. I don't know how people do it with a full head of hair. I just really feel like something is WRONG with me. I must really be a sick person now, with hair falling out everywhere. It's awful.

The other really random chemo issue I'm having? When I'm not feeling too nauseous to eat, I still have trouble eating, since my mouth and throat are so dry. I have actually ordered something called artificial saliva. Awesome, huh? It's hard to even swallow water. But the metallic taste in my mouth isn't too bad yet, so if I use plastic-ware, I can still eat some things, especially soft or cold foods.

So though I don't feel good--woozy, dizzy, occasionally sick, tired, sensitive to light, is, again, better than last time. And I'm grateful for something else. I am really glad I didn't do that clinical trial. The drug, avastin, that I would have been offered through that (the one with the scary side effects like bowel perforation, lung fistulas, and strokes) has just been ordered off the market for breast cancer by the FDA. They have decided the drug has no benefit for advanced breast cancer, which is what it was being used for (it was developed for lung cancer I think). Since I don't have advanced breast cancer, or even node-positive cancer, I have no idea why I was offered it in the first place. It is apparently one of the most expensive drugs in the world. The main benefit seems to be to prolong life for some months for advanced cancers, and it was being tested to see if it would halt recurrence. Anyway, boy am I glad I didn't risk some insane side effects for something that would have had no benefit to me and would have been pulled from the market right in the middle of my trial!

One thing I've learned about my experience with chemo is that the Friday after is a good day for me to have some distractions. I'm so used to being home on Fridays with the kids, but I'm not up for taking care of them, so they go to school that day. Lenny had a playdate yesterday instead of school, which was good since I feel guilty about her going to school five days a week. Augie is just too hard to take care of with his insane moving around and 50 poopy diapers a day, so he goes to daycare five days most of the time too. Just a few months ago, he was only going in three days and I was nursing him 5 times a day. How things change. I'm sleeping by myself now, downstairs, to avoid the A/C on my head, and Gabe and I don't have much time together since I am often useless and he is busy around the house. It's really making things different around here. So if anyone's hanging out on a Friday after I have chemo, give me a shout. I'll be too out of it to be exciting, but no need to just get lost in my thoughts!

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