Day 92: Random ramblings

So I am officially 3/4 of the way through with a/c. On the one hand, that means I'm almost done with it, but on the other, I have to do it one more time. Ugh. I couldn't sleep well for the last few nights before this treatment. It is so awful to think about putting yourself through that; I try and try to keep it out of my mind, this thing that I'm doing to myself. But then new realizations kick in. Chicago's been so hot this summer, and while I know it's normal to feel dehydrated on chemo, I've been wondering why I get headaches etc. in the heat. I'm not having hot flashes yet, so that's not it. No--I have lost the ability to sweat. Like a newborn baby--no sweat, no tears, no hair. What the hell kind of shit is that?

Chemo yesterday started out a little annoying. I have been lucky to have my own private room with a tv for the last two treatments. This time, there was no room at the inn, and they put me in the communal infusion area with several other women. Gabe and I were joined by a friend from New York, so my nurse found a room for us so we wouldn't be too cramped. And then I got some relatively good news. My numbers--white blood cells, hemoglobin, etc. were all fine and even better than last time. I think that's one of the things that made me most nervous before chemo--if my numbers don't stay up, they will put off my treatment, and my magic day of October 13 will be put off as well. I really, really intend to be done with cancer treatment by Christmas. It's also scary to think that you could feel fine, and go in and find out that there's something going on in your body that's just not right--these numbers are indicative of very important things. It's akin to the original cancer diagnosis--you're walking around feeling fine, and then someone tells you, sorry, not really.

But this time all systems were go. It took the nurse a little coaxing of my veins to get the iv in, but then she did it fairly effortlessly. Three down, still no port! Taxol will be harder-it's a much longer infusion. The nurse was scaring me by saying that taxol is more likely to make me lose my eyebrows and eyelashes. I'm lucky (always lucky!) I guess to still have those--I even have some arm and leg hair, and some little bits of hair in other parts of my body. I'm not looking forward to losing it all--I'm not a baby, I'm a woman, damnit!

I've gotten used to the shiny bald head, in a way, and I think one reason it works is that I still have eyebrows. However, I do get rude comments--today I went for a walk and a teenage boy on a bike laughed and pointed at me, shouting "hell no!" Lots of people stare, but I have realized something that surprises me. I don't really care. Chicago is a big city. There are lots of people and things to look at that are more disturbing or interesting than me. If people do look, it is unlikely that I will ever see them again anyway. And oddly, it's not that much different than having people look at me for my red hair. It's also led to other off-hand compliments, like that I have flawless skin (it helps to have no oil in your body), or that I have nice ears. I remember years ago I went on a blind date and I guy told me I had nice ears. That seemed so weird. Now, it's like a daily remark.

Does my relatively easy transition into being a bald woman make me grateful? Hell no. I really wish I still had my hair. But you have to find the tolerable in the intolerable I guess. Like today--I had a little bit of appetite, and I even ate some chicken and a biscuit for dinner and it's still in me. The weekend will be the true test--once the miracle Emend pill is over tomorrow, the nausea might really kick in, along with the weakness and fatigue. But if it's not as bad as last time, and if I don't have that horrible stomach pain or get down to 110 again, I think I'm going to give acupuncture the credit. That, and the cheeseburger and shepherds pie I ate in the few days before chemo, which might have given me enough iron to sustain me. Either way I'm going to do weekly acupuncture to get me through this a/c. It's worth a shot.

On another subject, I have been thinking a lot lately about how or why I am handling this cancer situation in my own way. It brings me to something that happened in the radiation oncologist's office. This doctor looked about 20 years old and was very serious. But since I'm at a big research hospital, he was still trailed by two groupies/residents. One was a woman who asked me lots of questions. The guy just seemed bored, or nervous, or something. It was a little uncomfortable. I had to have a breast exam from my doc and the female resident. Just take off your gown, lift your arms up, lie down, do this, etc. This seems like the 87th breast exam I've had since May 4. I might as well show my boobs to the whole world at this point. As I was getting the second exam, Gabe asked me if I felt like a lab rat. Without hesitating I said, sure, but I've always felt that way.

That explains a lot of it I guess. I have memories of that CT scan at 6 years old, doctors not listening to me, disregarding my feelings. I started to learn this lesson then, about being my own advocate. I've written here about my experiences with epilepsy and being in a wheelchair as a child. One thing that I don't think I've ever written about or even told many people about was something that happened when I had the toxic reaction to my epilepsy medication when I was 8.

My neurologist refused to believe that's what was happening, so he put me through a bunch of guinea pig tests for a week. At one point I was in a big room, separated from other patients by only a curtain. Two women, probably in their fifties, were having the same procedure as me. What was it? A barium enema. You can imagine what that was like--I'm sure, thinking of it now, that they didn't really give me a child's dose. Anyway I could hear these women screaming in agony as they went through this, so I knew what was coming. It was, I think I can say, the most painful thing I've ever gone through. Worse than labor, though not nearly as long. And I didn't say a word. I just cried silently. Worse still, I learned that the procedure that tortured me was totally unnecessary, brought on by the doctor's ego in refusing to admit what the ER doctor figured out in 5 minutes. It was for nothing. So my pissed off nature at chemo in part goes back to that, among other things. We had better not be doing this for nothing.

Those experiences also colored my opinions of doctors as a whole. Even though that neurologist was a man, you will never hear me say that women doctors are better, or that they understand me better. I have had great doctors of both genders, and terrible ones as well. I've had female doctors who thought they could relate to me just for being female, and it's never really worked out. I had a wonderful male pediatrician, and a great female doctor in my teens. My current ob is very eccentric, always calling me sweetheart and punching Gabe in the arm, very gruff. But I have never once talked to a nurse on the phone in the entire time I've had him, through two pregnancies, cancer, etc. He has always listened to me, even to tell me that I'm nuts. He still answered the question, found another specialist, gave me the damn breast ultrasound order, etc.

What I want in a doctor is humanity. I prefer eccentricity actually. Just let me know there's a human being in there, so you can see that I'm human too, and I'm NOT a lab rat. For some people going through cancer, this is all new to them. I do feel like I'm in a somewhat better place, not being blindsided by some of the insanity in the medical field. Of course, I wish I had never learned any of these things when I was so little, but perhaps they have now served their purpose.

In addition to the medical lessons I learned from what I went through as a kid, I also learned how to handle being different in a situation that surprised people: the neurologist who always seemed surprised that I was cute, or bright; the other kids who said things like, I heard epileptics are retarded, to which I responded, but I'm in your class so....; the boys who took me out on dates and tried to act like they would know what to do if I had a seizure; the people who looked at me with such discomfort when I was in my wheelchair because I looked so damn...normal. Gabe said to me the other day--it's so weird that you're bald. I think of cancer patients who are bald as looking sick. And you don't--you're just bald. You look the same.

Do I? It's hard for me to see it. I don't feel like me, physically, and yet I feel like me, emotionally. Spent maybe, but me. Does that make sense? Writing this blog has a lot to do with that. It's funny how they tell you that cancer can change your life, make you re-prioritize, etc. I think the people who say that are on drugs. Every cancer survivor I've talked to has said, I'm still waiting for that moment when I'm wiser, when I can suddenly move to Tahiti and live my dream life, when I become a better person, or when I feel less haunted. Still waiting for that moment when the man (the one holding the gun at your head, who might never pull the trigger but who also never leaves) goes away.

For me, the biggest change has been in making myself write, and then finding out that other people actually read what I write. I've always been horrible at sitting down to write creative stuff. But every once in a while I make myself write a poem, usually as a present for Gabe or Lenny or to remind myself of something big, like having a baby. I have a lot of poems that I know are pretty good, but they're sitting here, unread by anyone but me. No cancer poems though, not yet. For years I thought that business writing took away my ability to write creatively, and while I still find this blog to be ridiculously self-focused and I'm surprised every time I find out someone has read it, it reminds me that cancer has not taken me from me, not yet.

Of course, it has taken parts of me, literally and figuratively. Perhaps the whole really is more than the sum of its parts. For example, looking in the mirror is still a trip. I must not be totally without humor about it though, because on my walk (I was going so fast! I felt the wind on my scalp! and then four blocks from home I hit the wall. I made it, but it wasn't pretty) I started thinking about one of my favorite pictures of Augie. It turns out the picture you see of him above was taken one year ago today exactly. I got this idea in my mind, and I started laughing. Walking along the street, bald, a day after chemo, laughing at myself.

Let's assume that I get to see my kids grow up. I will right? One day we will embarrass Augie in front of his friends by busting out this picture, and I can honestly say, see honey? You really did get your looks from me.