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.
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As your mom, this is, of course, hard for me to read. As I’ve said a million times before, I wish you weren’t going through this, I wish you weren’t scared, I wish nothing would hurt. As a parent, I’m supposed to stop the hurt of the child that I love so fiercely. And I can’t.
ReplyDeleteBut as I’ve also said a million times, this blog is a gift. It lets you put your feelings down in a very concrete, positive way that no doubt helps you deal with what most of the rest of us can even imagine. So it’s a gift for you. But it’s even a bigger gift to the rest of us who love and want to support you…and who may, someday, share in your journey. After all, 1/7 (or 8, depending on what you read) of us women will have breast cancer someday in our lives. Most of us will either die of heart disease (the nation’s # 1 killer) or cancer. This is not something that happens only to “someone” else. Any one of us may sometime (soon?) find ourselves identifying only too closely with your thoughts, fears and dreams.
Only one of those “someones” who is going through this can make pronouncements about what you should or shouldn’t say and feel. And even then, I am pretty sure that each of those “someones” would say those pronouncements are individually realized and motivated. The fear associated with cancer is universal – otherwise we would not refer to it so proverbially as the big “C.” Criticizing the how of how anyone gets through the fear of cancer and the process of “fighting” it is just not appropriate.
You have always had an uncanny ability to see through to the heart of the matter. You also possess a candor and brutal honesty that sometimes might make that heart more difficult to embrace. But those same attributes – and they are attributes – also will, I think, help you and the rest of us get through this idiotic “journey” that random chance seems to be taking you on.
Yes, I’m your mom and I have a history with and love for you that are both long and deep and unshakable. But I’m also a person who can read your blog and find myself reading about a person I just simply admire and am glad I know.
No one can blame you for not wanting to lose your memories or your physical presence (whether it is your hair, the shape of your body, the feel of your skin or your sexuality). Anyone who does – or who criticizes you – is simply in denial for how this would affect them.…a denial I think all of us who know you wish we were once again protected by – swimming so happily in that state of ignorant bliss.
So I thank you once again for this and look forward to a couple of days from now when we can share the heartbreakingly beautiful views off our Wisconsin deck as we watch Augie toddle happily after his sister, the dog or, no doubt, anything else that moves, catches his eye or fascinates him.
Love,
Mom
It's a lot to think about, and you're right, it's scary. Like you said, though, you'll do the best you can. Cancer was just put upon you, but you're making the choices about how to deal with it now. And what will define "Katy" after all this is done is whatever way you choose to move forward with whatever you have. You'll still have control over that.
ReplyDeleteYour mom's almost as good of a writer as you are, Katy. ;) It's true this blog is a gift. Though I don't always pick up the phone and call, I think about you a lot, and I appreciate both the (what you call mundane) updates on what's going on, and the thoughtful unraveling of the sadness, hope, frustration and fear that this experience is causing.
ReplyDeleteI'm curious. Did you experience absent-mindedness when you were pregnant? I know I did, but I'm kinda scattered to begin with. When I hear about chemo brain, I assume it's analogous, though I really don't know. I know that my coping mechanisms for not being inherently organized are what make me good at what I do. Overcompensating has made me a pretty organized person. If your potential coping mechanisms for chemo brain include writing things down, I know you're good there. I hope it doesn't sound trite to say you have smarts to spare, and your brain slowed down a little could still run laps around the merely above-average brain. This is why you find genocide in Time magazine while you were actually hoping for some mindless trash out of People magazine. I'm very intrigued by this irony regarding organic cotton, by the way.
My mom the retired counselor has said on many occasions what you've said about change. Good or bad, it's stressful. It's something that's true of homeless people who get housed and are on a good path. Even a change as positive as that can be hard to process, and it can sometimes lead to self-sabotage. I can see from my outside perch that you are making good decisions from the limited options you've got to work with and that you are fearless in getting the information you need to make those decisions, even though you admit to sh***ing bricks about what changes lie ahead.
Day 420. A year ago Augie was taking his first excited steps, he's now loquacious and getting the hang of the potty. Lenny has learned to swim all the way out to the platforms at Silver Lake in her inner tube and you, my dear, the one we feared we might lose too soon, seem to be well on your way to mastering the childhood skill of riding a bike. We still fear for a future that may never come, but our hope is renewed and a sense of normalcy seems almost restorative if you can call these things - stress about buying and remodelling a house, the kids, their schooling and activities and friendships and finding time for each other - restorative. That feather in the road - it might be an eagle's or a hawk or just a pheasant after all.
ReplyDeleteYou've lived out a year here past the anticipatory fear of chemo's consequences. How have you fared? Sexually, back on track; despite the worst that induced menopause inflicted, unkind to you in many ways. Your recovery was like a switch flipping from a chemically induced "off" turned right back on after a surprisingly short time had passed although it couldn't come soon enough. Brains - despite the "missing" summer and fall aside when your focus was understandably on treatment and survival - you're as brilliant as ever; although clearly the stress of the everyday changes seem to be getting to you more. Likely some of that is just being overwhelmed by the cumulative absorption of stress over the recent years.
That leaves us with the hair. No, it's growing back nicely, thick and lustrous. It'll have its awkward moments that may seem to stretch for days or weeks between haircuts or styling challenges... but it's so much darker you worry you've been disbarred from the realm of the redheaded by your triple negative infraction's treatment. There's still a deep, dark red in there waiting for enough time in the sun to really get out and show itself.
I never realized how important being a redhead was to your identity; but I get it being constantly challenged to answer the question "Where did the kids get that red from" myself when once could just point to you - not that we NEVER heard people ask that before you lost your hair. Don't forget - those lustrous locks you used to have aren't gone - we still have in hip-hat form stowed in a box. You could put them on whenever you want if you so desire... but as I relearned from Lenny recently "hair is just a dead thing like fingernails and skin."
So while I won't say you got out of treatment easy and I can't say we're out of the woods for another couple years, I think we can see the light at the end of the tunnel. Even if an accursed heart-wrenching round two recurrence extends a bony finger of deathly cancer regimen at you again, I've seen that you CAN be stronger after cancer in ways unexpected. Like learning to ride a bike; becoming a somewhat deeper thinker and striving through treatment entirely on your own terms and blazing your own path. Buying a bigger house, making bold moves in your job on the tail of so much other extant change related stress that you should have just cowered in a a turtle-shell of comforts for as long as you could. You rejected a chemo port, designed a new color scheme, induced a monosyllabic boy to speak not just a little but with great volume but also greater love.
Be relieved - chemo didn't fundamentally change you! Overall, the cancer experience has inflicted deep-seated, what-if doubts. Undaunted, you continue to watch TV while reading; you are mom extraordinaire motivating the lot of us to do things NOW because who knows what we will or won't be able to do later; ever the planner at work and home; and the one who still will ponder the injustices against of those least fortunate and most vulnerable of human beings in the world.
P.S. I'm curious to know what's come of the organic cotton farmers vs. malaria battle in Africa... will the independence of South Sudan have any impact and has any headway been made in a year's time for those suffering under your aptly identified "injustice by good intention."
ReplyDeleteP.P.S. I'm going to go out on a limb here and say there's a fifth trait that defines you - being able to take potentially terrible, life devastating experiences beyond your control and with luck and introspection turn out words of wisdom and share uniquely comforting notions instead of promulgating endless uncertainty. Keep being marvelously you. I am not prouder to know another person on this earth.