Sunday, July 18, 2010

Day 74

I'm finding it hard to write a blog today, because apparently I will never be able to top the bald blog. I can't believe the response I got from that! I feel so humbled by all of the nice things people have been saying about me. Once these comments started coming in, I started thinking about how I thought I was pretty good at taking a compliment in the past, because I used to get a lot of them. But then I realized that wasn't really true. In the past, my HAIR was used to receiving compliments--that's probably 99% of what I've been complimented on in my life. There are exceptions--Gabe and other guys I've dated have complimented me on other things, and people in my immediate family have, since my hair is probably not even noticeable to them. Girlfriends have complimented my shoes and stuff like that. But other physical compliments? I really have no idea how to respond, because I have very little experience with it.

So to everyone who has said such nice things about my bald head here, and on facebook, and in personal emails and in person--thank you, thank you. What else can I say?

I am getting used to being bald, to some extent. Looking in the mirror is still strange. I like the feel of the fuzz, but I worry about how shiny and pink my head will be when even that falls out later this week. It was very hard on Friday morning when I came home from a walk and took the bandana off my head and Lenny cried, shouting "I'm tired! I'm tired!" and refusing to look at me. I told her it was ok to think I look weird and to not like how I looked. But I did cry a bit myself about it later. She seems totally used to it by now, as I have been bald at home all the time. Augie seemed confused, but he was equally confused when I was wearing a wig, or a bandana. He was looking for my hair, and not finding it, so all of those alternatives must have been equally weird to him. However, he doesn't seem to care.

Gabe is of the opinion that when my hair grows back I should wear it like this. He really seems to love it. I think he watched too much Star Trek as a child.

Everything that I thought about being bald in public has been true so far. I have been taking walks every day, and I've worn bandanas. I've learned that that is the same as being bald, from a lack of anonymity perspective. People know. They look at you and then try and look away, thinking CANCER. I really don't care what people think, and obviously I'm very public about having cancer. But as women I think we all would like to think we could walk down the street and mind our own business. Sometimes it's hard, mostly because men can be jackasses and they whistle at you or give you a hard time or something. You think, can't I just walk to the train? Leave me alone. When you're pregnant you REALLY hate that stuff. People walk up to you and ask you questions, touch you even. This used to happen to me all the time because of my hair. I hated it, but I was used to it. And there are just times when you don't want to have that cancer conversation, or have people give you that pity look.

So there are some good occasions to wear a wig. I wore a wig to the grocery store yesterday, and when I went out to lunch with a friend on Friday. She said by the time we finished eating she had forgotten I was wearing a wig at all, since it looked natural. She said this after I took it off in the car, and that must have been kind of funny, to see someone take off her hair.

But I will try this bald look too. I'll wear the wig to take Lenny to school, so she doesn't have to deal with other kids' questions. I'll wear it to commute. Then I'll probably take it off in the office and be bald cancer girl at work. People at the fed can handle it. And tonight Gabe and I are going out and he wants me to be bald so he can "show off his hot bald wife." Hmm. We'll see how that goes.

So I'll probably continue to go back and forth on the hair issue and write about it, but I sure got used to it faster than I expected. I was helped along in that process by everyone telling me it looks great. So thanks again!

This sleeping thing I just can't get used to. I did the acupuncture Thursday, which was interesting. I had another of these bizarre experiences while I was waiting where I ran into someone from high school who is a social worker in oncology there. I lived in Oak Park for years in my 20s and never ran into anyone. Now I live in Beverly and go do cancer stuff in Streeterville and I see all these people I knew as a kid. Weird.

After acupuncture, I went to my GP and she checked my thyroid (normal) and prescribed an anti-depressant, trazodone, for sleep. The neurologist/sleep specialist on Wednesday initially told me she thought my sleep issue was anxiety-related (I wanted to leave right then) but after hearing about all my side effect issues, she changed her mind and said she thought I was having "paradoxical" reactions to medication. She gave me some Lunesta samples to try.

I never took the Lunesta or filled the trazodone prescription. I'm scared to take any sleeping pills after what Ambien did to me. And I'm still convinced that I had some withdrawal symptoms from Lorazapaam, even though I took so few of them. But I'm glad I went to the neurologist, because I needed to talk to someone who knew something about epilepsy. She told me that if I had gone that long without sleeping with no seizures, I would probably be fine. She didn't expect me to have any more. That was a huge relief, even if it's just one doctor's opinion. It just didn't help to talk to a cancer doctor about that. Plus, the neurologist knew about all of the different options for sleep--she didn't tell me that there were only three. I think my insomnia is definitely chemo-induced. It might be rare, but I'm not the only one with this problem.

After acupuncture, I came home with these little magnets in my ears and on my wrists. I was supposed to press them throughout the day. I took one of them out of my ear since it was bugging me. I also took melatonin on Thursday night. After writing the bald blog, Gabe and I talked for a while and I didn't even try to go to bed until midnight. I slept on the couch. I realized that due to the fact that we have an old house with radiators, and therefore no central air, that the window a/c blowing directly on my head at night was really bothering me, drying out my extremely dry chemo body even more.

So I did these things, and--I fell asleep. I woke up at 2 am, and thought, shit, I won't be able to go back to bed. I was up for 25 minutes or so, but I didn't move. The next thing I knew, I heard a strange sound. Birds! I actually teared up. It's hard to describe this feeling of gratitude and relief from sleeping less than 4.5 hours. I thought, this means that when I went to sleep, it was night, and now it is morning. That revelation gave me the energy I needed to take an hour long walk at 5:30 AM. The same thing happened Friday night. I thought, hallelujah! I'm saved. I don't know if it was the acupuncture, the melatonin, or just the distance away from chemo and all the other drugs. But I thought if I can get 4 hours of sleep a night, I'll be fine. I have functioned very well on that amount of sleep for large chunks of my life. I'll be able to go to work and everything!

And then there was last night.

I took the melatonin, tried to fall asleep in my actual bed. It didn't work. I went to the couch. I never fell asleep. I was so depressed by that. At 5 AM, I went up to bed. Somehow I fell asleep then for 2.5 hours. I realized that this is why I need to decide about telecommuting on a day to day basis, if I'm allowed. If I have nights like last night, I won't be able to realistically get to work at a regular time. But I could always run downstairs and start working on my laptop. If I sleep from midnight to four, I can go to work and be fine. If I'm not allowed to do this, I will just have to take short term disability. I would rather not do that, but I don't see this insomnia getting fixed anytime soon.

I am dreading chemo this Wednesday. I know it's cumulative, and I can expect it to be worse this time around. More than the sickness I am trying not to think about those days just after with no sleep. So I am holding on to my Lunesta. I will fill the trazodone prescription, and maybe I will save it for a moment of post-chemo desperation. Otherwise, I'm trying to avoid more poison in my body, you know? My body clearly doesn't do what it's "supposed" to do. If it did, I wouldn't have lost weight. I emailed my chemo nurse to tell her I was down to 113. I weighed 117 the day of chemo, and they had my weight at 120 or something. She told me I would need to lose or gain 10 pounds to change my chemo dose. That seemed like bunk to me. As someone who has lost huge amounts of weight post-baby, I know that the difference in my body between 140 and 150 pounds is much less than the difference between 125 and 115. Shouldn't it be about body weight percentage? Anyway she told me that weighing 113 would indeed change my dose. Then she proceeded to say, "Most people don't lose weight on this regimen."

I fail to see the relevance in that statement.

It's funny about acupuncture. Those who know me well know that I'm not a holistic medicine type. I'm not really a spiritual person, and talking to me about my heart's spirit and my energy fields might fall on deaf ears. But I am totally willing to believe that acupuncture works. I mean, if someone decided that filling my body with a poison that is so extreme it kills all kinds of healthy parts of me is good, that it's ok to give me a medicine that I can only take four times in my life (adriamycin) before the risk of it stopping my heart is too great, and that pointing a radioactive gun at my chest 30 times is a good plan, why wouldn't it work to stick some needles in my body and push on some magnets? It's worked for thousands of years, and it doesn't matter to me why. Chemo has been around for what, 30? I'm really glad that Northwestern offers this program that gives cancer patients 6 free "alternative" medical treatments. I'll use it for acupuncture, since that's not covered by insurance.

And maybe, just maybe, I'll sleep "well" a few days a week. Just like everything else with cancer, the good things all become relative. So on my relatively decent 2.5 hours of sleep, I'm signing off to take a family walk. I haven't decided yet if I'll wear a wig. If the kids come along, I will, but if they stay home, probably not. Unfortunately I will never be able to go outside in the summer during the day with a bald head. I really don't need skin cancer on top of breast cancer, right? No, thanks!


  1. Last night Katy put the kids to bed while I did dishes. We were looking forward to watching Leverage - a cheesy but superficially satisfying "robin hood" caper-con show... but I took a quick shower first and when I came upstairs she was sound asleep on the couch - just like old pre-chemo times. So last night was a relatively good night of sleep.

  2. Re: star trek... Tony has had dreams about me with a short "spy do". I think it's a thing.