I have so much going through my mind right now that I debated against writing a blog at all. On the other hand, if the point of the blog is to get some of this stuff out of my head and into the ether, I guess this is a good time to do it. But if you're looking for an update on what's happening with my treatment, that's not this blog. This is blog as therapy time for me.
First of all, today was Augie's 13 month birthday, and he took his first steps. He's been taking some tentative steps over the last few weeks, but this time he made it five and a half before he plopped down on his butt, saw us clapping for him, and got so excited he slapped himself.
I can remember that feeling. Both of them actually--the excitement over small things, and the learning to walk part. Not learning exactly, but walking again after not being able to for several months. It's a cool memory, and a rare one. I'm aware of that. I can also remember one time when I ate a particularly good nectarine. I was probably 19, and it was so good I really couldn't believe it. I had to call someone on the phone, and I couldn't decide if I should just chomp the whole thing down or savor it. Another time in college I was talking to my long distance boyfriend on the phone and I was crying. Me--the person who doesn't cry. Why? Because I was studying something interesting, it was nice outside, and I was happy. That was it.
These are some of the things I was thinking about during my MUGA test today. After some more botched IV attempts (I doubt I'll get through chemo without a port but damnit I'm going to try--I shouldn't have made that junkie comment in the last blog, because I look like one now), I got to lie in the claustrophobic machine while a non-radioactive camera took long, slow pictures of my heart. The machine didn't need radiation, since they had already placed that in my body. At the end of this cancer experience, I should be glowing. Anyway, as I lay there perfectly still I could remember the CT scan I got at 6 years old like it was yesterday. The way I was taken off alone because the doctors didn't listen to my mom, how all of the students were observing me, how heavy the lead blanket was on my body so that it made me nauseous, how they got frustrated with me because I couldn't keep my head still for ten minutes at a time. I've grown up since then. I don't listen to doctors if they tell me something I don't trust. I stand up for myself. I can keep still. But on some level am I the same? I mean, who was that 6 year old, that 9 year old learning to walk, that teenager so thrilled with life? How do those girls compare to 34 year old me?
I'm thinking about this now because really what scares me about chemo is that I will be different on some fundamental level when it's over. Temporarily or permanently, it's still a scary thought. No one wants you to think about this, but I think I owe it to myself to consider it. Take, for example, some of the defining things about me. Some people might disagree with these things or with the idea that they define me. However, I think there are at least three things that chemo either will or might take from me that play a big role in my sense of identity and in the way people interact with me. I've always been the girl with the long pretty red hair, and I've also always been a smart and sexual person.
I'll lose my hair--that's a given. I've talked about that enough. But I think people are unaware of how much that affects my interactions with people. I've gotten things in life because of it. I've been noticed, for better or worse. But because I am smart, the hair thing was never my only thing. I managed to have 100 seizures a day and still be one of the smartest kids in class. I made it through years of anticonvulsants without cognitive impairments. I put myself through grad school and managed to have a career doing nerdy research. And now I really fear this chemo brain phenomenon. It's real, and they should call it something else so it doesn't sound like a joke. People lose their memories, forget your name right after you introduce yourself, become disorganized, begin to write lists for things like "pick the kids up from school," lose chunks of time, forget how to concentrate. If I'm not the person who is super organized, who remembers everything, who can write easily, do 15 thinking tasks at once, read a book a day, then who am I?
That takes me to number three: Am I that fairly sexual person who is at home with her body and doesn't have a lot of self esteem issues with men? Well, maybe not so much in premature menopause, which can be so severe for some women in chemo that they lose the ability to have sex. And if chemo or steroids makes me gain weight, how attractive will I feel then? Shouldn't that be the least of my problems, you ask? Well, no. I worked damn hard to get to be 115 pounds, even if half of that was just nursing. To have it taken from me just because of some medication, or some artificially induced hormonal changes that shouldn't happen for 15 years, that is going to be some tough shit to handle. And I know. I remember when my epilepsy medication made me chubby when I was 8. I had always been a tiny petite little thing. All of a sudden, I felt like someone else. I was never hungry, so it was frustrating to gain weight and not even get to eat. My parents were actually concerned that I had an eating disorder--in third grade. I just hated to have anyone talk to me about food, because I knew that what was happening to me was outside of my control, and it really bothered me that anyone thought I was doing anything on purpose. To lose my hair and potentially my figure and my sexual function as well, that is just too much. I mean, regardless of what anyone says, people will treat a chubby bald Katy much differently than a skinny long-haired Katy. And I will feel different about myself.
Outside of the physical aspects of chemo's side effects, I think a lot about the other things. For most medications, there are some side effects that effect quality of life on a limited basis. But chemo cuts to the quick and affects the basics. The possibilities include losing the ability to: recognize yourself in the mirror, eat, sleep, have sex, feel your feet, grasp objects, and remember your life.
I realize that all of these things might not happen to me. But what bothers me is that I have no control over any of them. I will do the best I can to keep my normal life together, but it's just a big unknown. People will be able to see the hair loss, the weight changes, the skin discoloration. The rest will be going on inside of me, and will affect me even more. What kind of badge do you get for that? I remember right after my car accident while I was still in the hospital, I looked at my hand and there was a bloody dent in one finger where a rock from the street had gotten lodged in my skin. I thought to myself, is that little scar all I will have to show for this? And to this day, it is. You can't see the arthritis, after all. Of course at the time I didn't understand that I would have a very public experience with that accident, since I would be in a wheelchair for months. At nine years old, I just wanted some proof. This bad thing happened to me, and I'm not the same. See this long, jagged scar on my hip? Oh wait--I don't have one. What's changed, physically and emotionally, is on the inside.
Even before chemo starts, that's how I feel about cancer. I'm not the same, but I just fear how much more I'll need to change before this is done. You might ask, shouldn't I be glad that chemo might save my life? I guess I should, but I'm just not there yet. I feel so young and healthy and attractive and smart right now, and this might be the only time in my life when I get to say that without seeming like a conceited bitch. Because I might lose all of those things--starting next week. The anticipation of loss might be in fact worse than the loss itself. What is so hard is that I feel like this is a choice I'm making, and why would I do that to myself? Clearly, I'm doing it, so I guess the answer is I want to live a long life and with this triple negative cancer there's nothing else to help me do that. But a few months ago, or shit, even today, now that this rash from the antibiotic has gone away, I was such a high-functioning person. Now I'm going to purposely put that at risk. At least with the car accident it just happened. Bam--literally. Life is different now. This is just some slow process that makes you crazy until you see where you end up. Chemo to me is like an injustice brought on by good intentions.
Which leads me to more random thoughts. At work we are all focused on this financial reform, and (insert disclaimer about how these views are mine and not those of the Federal Reserve Bank of Chicago or the Federal Reserve system) there are a million aspects of it that interest me. One that is getting me revolves around some of the stuff that is already in the works regarding young people and credit. I was talking with some friends about this the other day and I was having flashbacks to when I did financial literacy work, and we were just hitting on the problem of college kids in debt, maybe 10 years ago. But now I'm thinking about this differently. Everyone wants to protect "kids" under 21 from excessive debt. On the one hand, credit cards don't actually get you into debt unless you buy shit with them. On the other, how many 19 year old kids right now are in college? In this economy, a lot of people that age are going to be working full time, or in the military, or taking care of their kids. They might need a credit card to buy necessities, build credit to get a job or an apartment. This idea of co-signers for young adults who want a credit card assumes a very specific lifestyle. Hell, it assumes you have parents.
Random thought #2: Before I got ready for the MUGA, I was reading Time magazine, since they seemed fresh out of People. I skipped the whole oil spill debacle to read this fascinating story about malaria in Africa--specifically, 7 countries in Africa that account for 2/3 of all malaria in the world. In one city, people are bitten by tens of thousands of mosquitoes a year, including four bites every day that contain malaria. I break out in huge ridiculous hives from any mosquito bite, so I think you would have to kill me in that situation. But it seems that malaria is doing a very effective job with that-- men living naked in the streets due to severe brain damage brought on by malaria in infancy, the huge number of children under five who die, towns that have nothing in them but houses and makeshift hospitals. This has become a cause celebre recently and lots of folks are raising lots of money for mosquito nets. But I just couldn't get over this one aspect of the story that is haunting me. Apparently, they know that they can cut malaria infections in half by spraying houses with insecticide. However, organic cotton farmers have protested this. Now how many babies in Sudan do you think are wearing organic cotton clothes? No, they are sacrificing the lives of thousands of children every year so some U.S. kids can wear "green" clothes made in these countries that are also experiencing horrific civil wars, genocide, you name it. I could feel justified in hating the diamond industry and getting a pearl engagement ring, but in so many ways I also question what is behind some of the "good" consumerism that is the rage today.
Injustice brought on by good intentions.
Why am I writing about these things? Well, a while ago I was doing too much reading about chemo, and I thought to myself, man, I wouldn't even wish this on Pol Pot. Now that is actually what I thought. And then I realized that I'm kind of a strange person, because that's not the first thing that would pop into most people's minds in that situation. This blog today is representative of me, maybe more than the other ones I've written prior. Because every day, I'm thinking about cancer and whether or not I will survive it, and I'm thinking about chemo, and what it will do to me. But I'm also thinking about genocide, and malaria, and financial reform. I think about injustice a lot. Maybe that's a fourth thing that makes me Katy. Maybe not. Regardless, if I lose my memories, or my train of thought due to this poison in a few weeks, I will be able to look back on this and remember the convoluted way my mind used to work. So this one's for me--feel free to still call me up so we can talk about normal things. You might wonder when you read this, but at least for now I can do that too.