Sunday, August 29, 2010

Day 115

I think this is the longest I've gone without writing a blog. I'll write more about the reasons for that later. First, I want to talk about the awesome birthday party I had last night. I wanted to have a party to celebrate 35, because there are a lot of people I don't see very often who have been in touch more since this whole thing started and I haven't had much time to see anyone. I also knew that I couldn't handle hosting a party, even if we had food delivered. Cleaning, telling kids what not to do, trying to fit people in my house, or alternately dealing with the horrible mosquitos of 2010 in our yard--it was all too much. And I knew I wouldn't feel well enough to have a party on my actual birthday weekend due to chemo. This weekend I figured I could probably taste food, and digest it, and that seemed like the way to go, since it would be depressing to not be able to eat your own birthday cake. And after this coming week, I might lose my sense of taste completely, so this was the only real time to do it. I chose my low-immunity time to surround myself with little germy kids, and my mom hosted at her house. Party time!

My mom might not have been prepared to have 50 people in her house, including 17 kids, the majority of whom were under 5. It's not really set up for kids. There are glass tables everywhere, for example. But somehow, nothing got broken, and everything went very well. I had a great time seeing people from various phases of my life--friends from high school and college, people I worked with in my 20s or knew from grad school, and the neighborhood folks I've come to know as a mom in her 30s.

Back in the day, before I had kids or even knew Gabe, I used to throw parties at least a few times a year. Gabe and I continued that for the 3 years we were together before Lenny was born. I would always make too much food and worry that no one would come, and yet I never planned anything fancy. I'm not much of a drinker and neither is Gabe, so some drinks would be involved, but mostly I always figured that if I fed people and talked to people, it would be ok. Each time I had a party I would feel really happy that we know easygoing people who can entertain themselves and talk to people they don't know that well. I would look at my house that I hadn't done much to before I invited everyone over, and think about the basic food or brownies that I would make, and wonder how that made for a fun party. And everyone would always say they had such a great time. I started to realize that people just like to leave their houses and do something different, and not much was really required in the way of preparation. If your friends are unpretentious, your parties can be too!

Once we had kids, we seemed to only host the annual kids birthday party with a few little friends and their parents or have small parties with parents we know in the neighborhood. Now I am inclined to go back to at least a yearly party with my friends from various walks of life, once all this calms down. Not that we really have room for 50 people, but hey. Maybe no one will come. One of these days, when I think that, it might actually happen. But not yet--it hasn't happened yet.

Most of the time last night, I didn't talk about cancer at all. That was very nice. It came up of course, and I'm sure that some of the people who hadn't actually seen the bald Katy in person might have been taken aback, though no one said so. I thought about wearing a wig for about two seconds and realized that was just not going to happen. It's interesting how kids don't even seem to notice, or care about seeing a bald woman. They just ask about snacks and juice boxes and run around.

I was much more tired than I would normally be when trying to play hostess. I let Gabe run after Augie, who managed to climb all the way up one of the flights of stairs by himself in the split second that Gabe and my mom turned their heads. They each thought the other had him, and then we heard him crying upstairs. When Gabe grabbed him and brought him down he literally grinned and thumped his chest. He is a little devious brute! I love him to death but my god. If I didn't have cancer and if I wasn't going through chemo, the boy would wear me out. Lenny spent much of the time with my mom, totally overwhelmed by the insanity of all the kids. And I actually ate like a normal Katy, including two pieces of cake. I have gained weight in my birthday week, so I'm back to my pre-chemo weight--maybe even a pound more. What's this about a low-fat diet to fight triple negative breast cancer? Impossible when there's birthday cake around.

The theme of the night for me was to remind myself that I had a life before cancer, or more accurately before chemo, took over my day to day activities. People know me and like me for different reasons, and none of those reasons are because I am a "strong" or "brave" breast cancer lady. One friend from high school told me when she saw me for the first time in years recently that she thought it was weird that anyone ever associated me with my red hair. She said she associated me with poetry, and my love of matching bras and underwear, and the fact that I used to drive a huge Delta 88 Olds when I was really tiny and looked too small to be behind the steering wheel. Though no one else gave me such vivid descriptions of what they think about me, I know that for most people, it's closer to something like that. I know that my friends aren't my friends because I had pretty hair or was healthy or, alternately, because I am fighting cancer. I needed to be reminded of that. So much thanks and love to everyone who came out last night, as well as to those who couldn't make it.

I really needed that party, because there's a reason I haven't written a blog in a week. I've been pretty depressed. I didn't want to write before today because if people knew how I was feeling, they actually wouldn't have shown up last night. Let's go party with the downer lady! Now, I know some people get depressed at "big" birthdays, like 30 or 35, but that's not it. Going through this sudden, violent menopause has really brought me down. Most women have decades for their bodies and psyches to get used to "the change," and if I was 50 or even 45, it would be that much closer to a normal timeframe in my life for this to happen. But to be in full blown menopause at age 35? And be bald at the same time? Facing the likelihood of further changes from taxol that will make me feel ugly or old, like losing my eyebrows, having peripheral neuropathy, or gaining weight because of the huge amount of steroids required for the treatment? Depressing, and more depressing. I'm glad I don't have hot flashes from menopause. But just losing my period is sad enough, since most people my age lose it due to pregnancy, not the opposite of pregnancy. Here I am, 35, and I suddenly out of nowhere can't have sex without over the counter assistance. I'm moody, which is one thing I have not ever really dealt with--I never had much PMS or anything. And it makes me almost unbearably sad.

It's very, very hard. And it's not something I can talk to friends about, because obviously none of my friends are going through it--I don't really have friends who are 15 years older than me. I know a few people who are breast cancer survivors, so I can talk to them. For some women, this menopause is permanent. I hope to god I'm not one of them. There are reasons beyond the immediate ones for wanting to avoid permanent menopause at my age. Ironically, losing your ovarian function puts you at increased risk of ovarian and colon cancer, in addition to a high likelihood of osteoporosis. How is that a good trade? Let's risk a deadlier, more insidious type of cancer, in order to fight the early stage palpable one that probably wouldn't kill me anyway.

This whole thing just seems like a bad trade right now. I hate it when some of these issues that chemo brings are called side effects. Losing your hair, fingernails, ovarian function, lining of your esophagus, tear ducts, taste buds, etc. are NOT side effects of chemo. Chemo is not a cancer-fighting medication at all. It is medication that kills fast-growing cells--all of them, in a case like a/c chemo--and cancer cells are some of them. When the rest of this bad stuff happens, it's not due to "side effects," it's due to the medication doing it's job.

Regardless, I feel like I've given up so much: my hair, tears, sweat, fertility, energy, normal sexuality--I've given up, at least temporarily, my youth. All for something that might or might not work to fight an early stage cancer that never spread. It just makes me tired. I'm tired of it already. I'm tired of talking about cancer, and writing about it, and most of all I'm tired of having it and having to treat it with this damn poison. I feel like breast cancer would have barely affected my family if I didn't have to do chemo. Surgery and radiation? Please. That's nothing. Lenny would have probably never even noticed, except that I got a little tired or couldn't do things for a few days. I could blend in with the world. Gabe could be my husband first and my caretaker second, rather than the other way around. Chemo just doesn't seem worth it. If anyone reading this gets breast cancer later in life--I sure as hell hope not but odds are about one in seven women will--don't quote me on that. I don't want to be the one turning people off of chemo, but man, is it a lot of bullshit.

And I am scared of taxol, because it's new and different and I don't know what to expect when they stick that IV in me for four hours this coming Wednesday for the first time. Cancer for me has been largely pain-free, with the exception of my surgeries, of which the first was much worse than the second. But surgery pain doesn't last forever. I had crazy pain in my upper arm from a nerve getting nicked with the sentinel node biopsy. That was bizarre--if a light piece of fabric or even a feather touched my arm the pain was excruciating. It lasted a month or so and then just disappeared. That is the type of pain, in the nerves and also in the muscles and bones, that taxane-based chemos can cause. I am never afraid of pain, as I got used to it at an early age. But I don't welcome it at all.

And I want to be able to button my shirts and hold my kids without neuropathy making it impossible. I am scared that I will be one of the 15% of people who is allergic to the solution they have to mix taxol with so that your body doesn't get destroyed by the poison. I am nervous that my veins will give out, since last time the first IV stick didn't work and the bruise on my arm from that still has faded but hasn't gone away. I am worried that my numbers will go down, as many people have that problem after 4 a/c rounds, and my chemo schedule will be pushed back.

Mostly I just want to be done. I want it to be Halloween, or my six year wedding anniversary, which will fall three days after my last chemo if all goes as planned. I don't look forward to starting radiation, but I know I can handle that, no problem. I wonder what kind of post-cancer woman I will be. Will I be like the woman I met at Carson's yesterday (I got five pairs of really cute shoes for $50--I love having small feet--they always have my size!) who saw me in line and asked if I was doing chemo. I said yes, and she said, me too--I did it twice. In 1990 and it came back in 2001. But God is good and I'm still here. I said, wow I'm sorry you had to do it twice but you look great and it is good to still be here. Then she gave me this sly look and said "and look!" She pulled her shirt down and showed me her port scar. A total stranger in a department store was showing me what could be considered a pretty intimate thing, laughing and asking "you got one?" I told her I didn't, that they were giving it to me in the IV and I showed her my bruise. That is some weird kind of bonding.

Maybe I'll be the woman who never wants to talk about it or think about it. Maybe I will join a support group, something I can't imagine doing. Maybe I'll be proud, or angry, or scared, or indifferent. Right now I'm just sick of it. I mean, I know I CAN do this, but I will put it out there and admit I don't want to. I'd rather just be healthy. And I know I can pull off being bald, but I still kind of hate it. I'd rather just be conventionally attractive.

I would rather be done.

So maybe what I need to do is plan a holiday party for right after radiation and before Christmas, once I know that I'm on schedule to start radiation in November. And people will come, and they can talk to me about non-cancer things, and they can eat the food that I should be able to cook by then, and maybe I'll have a little peach fuzz on my head, and I will be used to being a young woman who prematurely aged a few decades in as many months, and the future will seem like a real possibility and not something much farther away that I concocted in my imagination.

In the meantime, I am very grateful that I had one night like that anyway, even in the middle of all of this. And I had a moment that should bode well, if I believed in that type of thing. Once most people had left and just a few families remained, I saw a flash of light out of the window and thought oh shit, it's raining. But no, it was fireworks. They seemed to be coming from just a few buildings away, which doesn't make any sense. We're in the middle of the west loop and there are random fireworks going off at 9 pm on August 28? What's the occasion, beyond my birthday party? Of course everyone claimed they had ordered that for me. It was a decent short little fireworks display and Lenny in particular was really excited about it. If you don't believe me, I even took a picture. For more party pics, check out --the KatyDid 35 album. So in the end, KatyDid 35, didn't she? Maybe even with a little bit of pomp and circumstance.

Sunday, August 22, 2010

Day 108:Birthday Blog

Well today was my 35th birthday. Thank you from the bottom of my heart for all of your good wishes. Birthdays are bittersweet occasions when you're going through something like this. There's so much to be thankful for and yet so much to be fearful of--so much I'd rather not miss. At one point 35 seemed so old. Now it seems almost ridiculously young. I compare my 35 birthdays with the few my kids have had and just hope I'm still around when they're this age. How likely is that? Who knows. I guess none of us knows the answer to that question.

All in all, we had a wonderful weekend. A childhood friend flew out from Seattle to help after my last chemo session and we had a great visit in addition to all of the help that we definitely needed. On Thursday I went out to a karaoke bar--one day after chemo--and though I didn't sing, I also didn't need to put any makeup on my face since I had such a nice chemo flush going on. Is that an a advantage? Hopefully I didn't look too bizarre, though I seem to have stopped worrying about that at some point. I had a lot of fun and actually made it out past 10, which is good for me even on non-chemo standards.

Another friend from high school was visiting from England, and we hadn't seen each other in 4 years. Children have been born since then, people have lost their hair, and yet things don't seem that different. It's strange how easy it is to talk to people who knew you when you were a kid. Anyway, today, Gabe and I went out to dinner, and I ate too much and it made me sick. Lots of people called and sent emails, I opened some presents, my daughter made me cards, I wore a paper crown. As far as birthdays go, it was a good one for sure.

The week itself hasn't been so great. This last a/c chemo did not go silently into the proverbial good night. I felt nauseous during the infusion, for the first time. It didn't get better from there. I was completely out of it on Wednesday, fairly useless on Thursday, though not as nauseous as in the past. It took two tries with the IV and I have a huge bruise on my arm from that. I was very weak yesterday, but a little better today. Every morning and sometimes during the day I have to physically pry my right eye open due to the extreme dryness and lack of tear ducts making it stick shut. I have some blisters on my feet that seem to be related to chemo. I feel very sad--surprisingly so--about being in menopause. It does seem to have happened to me, though I have avoided hot flashes so far. Women talk about how great it would be to not get their periods, but at 35, it's just kind of depressing. No more fertility--that's a lot to give up, especially when I'm supposedly free of cancer! It could come back, but it's just the thought of how old this chemo has made my body, even if only in the short term.

In this 35th year, I'd like to look forward to a new phase of life rather than look back on an old one. A new, cancer-free life, where my kids don't suddenly have behavior problems that have come out of nowhere, leaving us clueless as to how to deal with them. A new life where we could decide that this is our complete family, on our terms. A life where my body comes back to me, and I can do all kinds of things again: sweat, cry, bleed every month, stand up without getting dizzy, open my eyes, eat and drink at the same time, sleep normally, take care of things the way I used to do.

This has been a lost summer and will to some extent be a lost year. And yet the year has happened all the same. I turned 35, and it's possible that if I hadn't found that stupid "clogged duct" and followed it so aggressively back in April, I wouldn't have ever turned anything more than that. Odds are in my favor to have lots more birthdays, right? That's what we're telling ourselves over here.

So here's to another 35.

Tuesday, August 17, 2010

Day 103:Pontificating Blog

One hundred days have come and gone, and I am sitting here pondering my self-inflicted mandate to write a pre-chemo blog that actually doesn’t have a lot to do with my cancer treatment. I get very reflective in these few pre-chemo days when I feel normal. But there’s a slight Flowers for Algernon effect wherein I feel good and have the knowledge of how that will be taken from me in short order. I would love to just run away and keep this healthy feeling. Right now, I can eat, drive, work a normal schedule, go to the gym (three times in a week! But do you know how hard it is to do a chest press or reverse fly after two breast surgeries?), sleep, play with the kids. Ironically, it’s during these feel-good times that my immunity is in the toilet. It starts to go back up right before chemo, so I have this tiny window where I feel like being out and about, and I can do it without worrying too much. And then, hello A/C! I can’t believe I will be done with it tomorrow. I’m starting to wish I had chosen cytoxan/taxotere, even though I would be really paranoid about the permanent hair loss. At least I would be done in four treatments. I will just be to the halfway point tomorrow after 4 a/cs. Ugh.

So what random things have I been thinking about? I’ve been contemplating this issue of cancer as identity. There is so much controversy around the term “cancer survivor.” Some people hate it, because they feel that it is overly dramatic and that it defines them. For others, it’s an important way to bring some acknowledgment and respect to what they’ve gone through. For me, I’m fine with it, but I’m equally fine with being considered a cancer patient or whatever is the term du jour. The name isn’t important to me. I had cancer no matter what you call it. And, literally, I have survived it, so far. I live with the understanding that in two or ten years I might not be a cancer survivor anymore, so sure, go ahead and call me one now. At some point I might be one of those people who valiantly “battled” the disease and lost. As an aside, that whole battle metaphor bugs me a lot more than the term survivor. Who am I battling? Katy’s bad cells? Can’t we just sign a treaty instead?

I guess it’s never been clear to me why the terms people use for such things can so easily offend. People say they don’t want to be defined by cancer. That’s one of the main reasons women wear wigs, and one of the reasons I thought I would want to wear one in public. And that is totally legitimate. Who needs pity, or overcompensated niceties, or awkward encounters, or any of the other reactions I’ve received when people look at me and see not only a bald woman but a woman with cancer? Well, the thing is, if people find out you have cancer, they will in part define you that way. That’s the truth. But how is that different than anything else?

I know I still talk a lot about hair in this blog, even though I don’t have any. It’s not because I’m hung up on it but rather because that’s the public manifestation of this disease, the one that brings the most reaction because it’s the most tangible. I’ve brought that on myself by not doing anything to hide my baldness, and I realize that. Some of the reactions have been incredibly meaningful, such as one that you see here. Gabe’s aunt buzzed her hair off in honor of me. Wow! I didn’t know what to say. I think I actually said, you didn’t have to do that, and I hope you don’t hate it! I was very touched. It had sure grown some by the time we took this photo.

Anyway, recently, I’ve had this hair epiphany, wherein I’ve learned that for me, being bald and having long red hair are almost the same thing in the way that those traits affect my interactions with people. For me, it's still hard, because I really did love my hair, and I still reach up sometimes to put it back, expecting it to be there. But baldness and red-hairness have some things in common. Why? Because both are different, noticeable, unique. People notice, and stare, and ask me weird questions, and, amazingly, I get compliments from strangers. In one of my very first blogs, if not the first one, I questioned how I could go from being the girl with long red hair to being the girl with the small bald head. But that’s exactly what has happened.

People have a way of defining us by what we look like, or by other physical aspects of ourselves, regardless of the circumstances. It’s unfortunate, but true. Again, how is that so different with cancer than anything else in life? When I was pregnant, I was just that—the big pregnant lady in the gym, at the conference, wherever. Pregnant ladies always lose a little of their own identities to the person sticking out of their bellies like a beach ball. When I was in a wheelchair, that’s what people saw--I was “handicapped.” When I had seizures, I was an epileptic. I know that that term is not acceptable any more, much the same as handicapped is not acceptable. Too defining, I guess. The terms have changed, but I don't think people have changed that much. There just might be more of an understanding that I should have been seen as a person with a disability, or a person with epilepsy, as long as I was a person first.

Of course, in truth, I was always that person, regardless of what anyone else said. Maybe being a woman has taught me an important lesson that helps me with these issues. I’ve always said that I think women spend way too much time and energy worrying what men think. After all, I have a masters degree in urban planning, not mind reading. Because, ultimately, who cares what they think? People are welcome to their thoughts, and I sure as hell can’t control what goes on in other people’s minds. Worrying about it won’t change anything. Women get upset if men are having inappropriate thoughts about them, and my response is, how do you know what their thoughts are? The only thing that matters is actions. If they don’t do anything inappropriate, who cares if they’re thinking unspeakable things? That’s their problem. I only care if someone makes it my problem.

I feel the same about all of this cancer identity stuff. Who cares if people see me as cancer first and Katy second? How would I ever know that’s what they’re thinking, and why would it matter if I did? It wouldn’t change the fact that I need to do this cancer bullshit. It’s just not my problem. My problem, or one of them, is having cancer, and having to do chemo. I might get a whole gamut of reactions, mostly to my obvious cancer-sign of baldness, but that doesn’t change the situation. And it wouldn’t change if people didn’t know either. My struggle would be the same, even if people couldn’t see it. That’s why changing the easy to remember “Y Me” breast cancer organization name to “Network of Strength” just makes me laugh first, and second, makes me wonder who thought that women feel strength through breast cancer. Mostly we feel tired. We think, um…”Why me?” That was the perfect name for it!

Why am I in this situation where I am forced, through the fact of my own personality, to see some of this experience in some kind of sociological fashion? Let’s revert back to hair as an example. These days, I receive compliments, and instead of just feeling grateful, which I do, I file my discomfort with them in the back of my mind while I simultaneously think about what these compliments mean about gender, sexuality, identity, etc. Why the discomfort? Anyone who has gone through cancer, especially cancer that required chemo for treatment, knows what I’m talking about. One, the very fact that I receive so many compliments on being bald proves that looks matter in how people treat you, even through cancer, regardless of what people say. Two, it’s hard as hell to receive any compliments when you have cancer. It’s wonderful and makes it easier to go through (so don’t stop giving them!) on the one hand. On the other, every time, I think in the back of my mind, hey, I’m not John Belushi. I never said that I wanted to leave a good looking corpse. Yesterday a guy on the street stopped me while I was wearing the dress in the pic above and said “You’re beautiful! Just beautiful.” And I said thank you and felt embarrassed but I also kind of wanted to cry. This whole cheating death issue is not supposed to happen until you are no longer considered conventionally attractive, and at that moment I was reminded of that. Like Gabe said after the last blog, I’d rather get to be decrepit and old.

So am I a cancer survivor? Sure. Am I a mom, a wife, a worker (for the man, no less), a white person, a member of generation X, a daughter, a size 2, a sister, friend, and a million other things that don’t have that much to do with what goes through my mind on any given occasion? Yes. People see me as those things, and I acknowledge that I am those things. And according to the state of Illinois, I’m still an epileptic, or a person with epilepsy. I still need the state’s permission to renew my driver’s license, and I will for the rest of my life. The state doesn’t care that I have gone half a lifetime without medication. If that fact isn’t defining, than what is? Epilepsy is still a part of me, decades after most, but not all, of the physical effects went away. By that token, this enlarged liver came from somewhere, and it wasn’t from my notoriously excessive drinking. To add another example, that car accident defined me. I mean, most people don’t have arthritis when they’re ten, or remember learning to walk, or keep those looks of revulsion from strangers tucked away in their brains. So what? I’ve still done what I wanted to do with my life. There are so many reasons that people get treated as less than they are, and it affects what they get to do, their opportunities, their happiness. Somehow that hasn't been the case for me. Maybe it's easy for me to say, let people call you whatever they will. Then just keep walking, if you’re able, and go where you need to go. Maybe it's been somehow easier for me to choose my battles and ignore the terminology.

In yesterday’s Tribune there was an editorial about an unspoken “club” of people who have cheated death, who are alive and shouldn’t be. The article was filled with stories of people who had been stabbed, left out at sea (or lake), walked away from accidents, etc. And of course the moral was, you will never be the same after this happens. You will appreciate life more, see it as a gift, and be a better person. Everyone with cancer is supposed to have this epiphany if they get to live. As you all know, I’m not a fan of that assumption. It’s not that I don’t value my life, but I just think the whole notion simplifies matters quite a bit. On the one hand, there is a reason that I think "cancer survivor" is an appropriate term. Let’s not lie. In the developed world, “only” 46% of people who get cancer die from it. Now, many of these people are also older, so there could be complicating factors. In developing countries, 75% of people who get cancer die. So surviving this is actually a big deal. Cancer tries pretty hard to kill you. That’s why it scares the shit out of people. But if you live, you’re not done. You spend the rest of your life wondering if every ache or pain is more cancer. This is fairly universal. At some point, you stop thinking about it every day, or so I’m told. The treatments are often long, and for some people they never end. But life keeps spinning. It doesn’t go back to normal, and yet, it never really stopped being normal.

I mean, I still argue with Gabe. People, including me, can still be petty and cranky. Cab drivers are still insane and I often wonder if I am going to live to get to my treatments when I get a particularly enraged cabbie driving me to Northwestern. Bizarre things still happen. This week, the kids were sick with stomach flu one after the other—of course not at the same time—so I couldn’t see them much. Right before Augie got sick, I bought new rugs to replace the $60 ones I bought when I was 22 and had my first apartment of my own. I figured it was time. Within three hours of putting them down, he had thrown up on one of them. One day a few weeks ago I came home from a walk to hear Lenny’s agonizing screams and cries. Holy shit, what happened? My eye! My eye! Did she poke her eye out? No, not quite, but almost.

With a breadstick.

You know what I’m saying?

More than cancer terminology, I get annoyed at the way cancer is used to exploit our society’s fear of suffering and death. There’s this new show on cable called The Big C, a series about a woman who finds out she has terminal cancer. Of course, she decides to change her life, start telling people what she really thinks, etc. I shouldn’t be so judgmental since I haven’t seen it, but this theme is tiring. You find out you only have a year to live! What would you change? Well shit, if you have cancer, you would probably spend a good portion of that year at the doctor’s office or hospital. You would be scared, and sad. You would try to stay normal, knowing you couldn’t. You would probably not have the opportunity to change your job, move, meet some hot new lover or eat the best food in the world. Hell, you might not be able to work, eat, have sex, or yell at people at all. Again, let’s not lie.

Moreover, why is there so much focus on damaged people, people who didn’t appreciate their lives, finding the truth through cancer? How about a movie or tv show about a person who was happy, and appreciative, and had good perspective…and got cancer anyway? What’s the story line? "Woman who used to get excited about stupid little things finds out she has cancer and still gets excited about stupid little things but in the back of her mind is sad about all the ones she might miss!" No one wants to see that. If anyone is enough of a glutton for punishment to go for that, just read this blog instead.

Perhaps my issue with this life epiphany thing is that cancer didn’t enable me to join the cheatin’ death club. That happened 25 years ago when I got hit by a car walking home from school. I don’t often mention this, but my life flashed before my eyes that day. People say that, but what does that really mean? Well, think about it. How long does it take to hit the sidewalk in a crumpled heap when you’ve been thrown by a sedan? I don’t know, 5 seconds? That’s it. Your life boils down to that. I had fast random memories—walking in a park, learning to play tennis. Even at 9 it seemed mundane, surreal, and impossible. That was my life? That’s IT?! Well, yes. I remember thinking: when I hit the sidewalk, I will be dead. I barely comprehended death and now it was happening to me.

Or not. I weighed 45 pounds at 9 years old and the difference between life-threatening injury, permanent injury, and death, was random and small. The impact of the car broke one hip, the impact of the sidewalk the other. A few inches away, or falling on the same hip, and I would have been paralyzed or would have never walked again. Another few inches and I would have died. The internal injuries I sustained left it touch and go there for a while. But I lived, and I went through all of what that meant. Disbelief, anger, night terrors for a year. I finally had to admit out loud that I was afraid of dying in order to get better and be able to sleep. I had to admit it wasn’t fair, that I was too young to die. I had to realize that death wasn’t an abstraction, but something that could, and ultimately would, happen to me.

So cancer can’t give me what I already have, it can’t teach me a lesson I learned long ago. Every fall is a new life for me, every pile of leaves I couldn’t jump in makes my heart well up. Is that a real term? Heart welling up? Because that’s how it feels. I doubt that I needed to renew my membership in this dubious club. I do know that I’d like to protect my kids from joining it , even by proxy, from getting too close to understanding death, at least for a while.

And that’s my long ponderous way of saying, that’s why I’ll go back and do my last a/c tomorrow. As I go through this, I am reminded of what I learned a little too early-- that life is always the same. Your kid is in agony, so you take the breadstick away and get her an icepack. You give her a kiss. Then you go in the kitchen where she can’t see you, turn your bald head to her, put your hand over your mouth, and laugh. And why not? In that crucial 5 seconds, that memory might be the one that turns up, out of nowhere. Who needs an epiphany? Life is interesting enough, just as it is.

Thursday, August 12, 2010

Day 99: Who is that lady?

Today I had some firsts. Specifically,my first time getting hit on since I've been bald. It actually took me a little while to figure out what was going on. I was in a diner, by myself, and this guy kept moving tables until he was sitting at the one closest to me. Then the attempted come on started. I was a little confused. And then I was flattered, when normally I would have been annoyed. I also got an "I like your style" from one of the cafeteria employees at work today. I guess it's true what they say--to each his own.

As an aside before we get to more firsts, I am also a total convert to acupuncture now. I feel so much better after I go, and each time I tell myself that it might be a coincidence, or the time passed since the infusion. But after 4 attempts, I think it has to just be that it works. So now I need to figure out a way to still get it for free (Northwestern charges $800 for each session!) after my freebies expire at the end of the month. It sounds like insurance might pay for it if I can prove that other pain management didn't work. Why do they assume people do acupuncture just for pain? Oh well, it's worked for that for me, as well as for insomnia and fatigue.

Now on to the picture, my second first of the day. Who is that lady? Doesn't that look like Katy's old hair?

Oh wait. That IS Katy's old hair. And one of Katy's hats. Can you imagine how much Gabe cried when I "tried on" my hair today?

And oddly, I wanted to cry too. Not out of happiness or sentimentality, but because that hair doesn't seem that different than the wigs to me. I'm used to my bald self now. But it is pretty neat to have my hair back, even if it's not attached to my head. Maybe I can jut go easy on myself and be the old Katy for Halloween. That seems better than my other idea, which was to don a catholic school girl uniform and go as Britney Spears. Time for another vote?

Tuesday, August 10, 2010

Day 97

It's interesting for me to read back on old blogs and see what kinds of things I was worried about with chemo. Some of it seems so quaint! Worrying about losing my memory, my sexual function, gaining weight. I have finished three cycles of a/c, and have one to go. Some things have gotten better with time--my nausea and appetite were much better this cycle, and while I got down to 111, I have gained back to about 114 and I think some of my weight issues are due to muscle loss anyway. I have been sleeping ok except for the few nights after chemo, even though I get up several times a night.

But this weakness and fatigue is just knocking me on my ass. It's so hard to hear about what a strong person I am to go through this, because it reminds me that I should be stronger than this. I should be the one who goes through chemo relatively unscathed. I'm the girl with biceps, the one who can do more situps than my skinny husband. I'm the one who was a few weeks away from giving birth, and I was in the gym three times a week, walking an hour every day AND doing water aerobics. I was as big as a house and every time I took a sip of water I could hear myself sloshing from all the fluid I carried around. But I was up and at em a week after Augie was born, feeling great. I was exercising after two surgeries. But now, ever since Sunday, I have been feeling like a shaky little weakling. I've tried to take walks every day because that's supposed to help combat fatigue, but it's so damn hot that I couldn't do it today. I have gone to the gym only sporadically and I'm avoiding the pool due to germs. So I feel like a sloth--my muscles seem to be atrophying on a daily basis, I'm dizzy, and I'm dropping things. It's making me a little crazy.

Today I went to a little local Catholic hospital to check out their radiation department. I had heard good things about the head breast oncologist there, and this place is very close to my house, which is good since you have to go in every day for 6 1/2 weeks. The short story is that I liked it, the doctor seemed good, and I will probably end up doing that once it's time. The longer story is that while I was there they took my vitals and I got a raised eyebrow from the nurse when she took my blood pressure. Um, is your blood pressure always this low? Huh? What is it?


Holy shit. No wonder I feel like I'm going to pass out. I frantically called my chemo nurse who said that she thinks I'm probably just dehydrated. I have been drinking a lot of water and gatorade, but it is very dry in our non-central-air-conditioned house, so maybe that's a factor. I'm staying somewhere else tonight, away from my family, so that the stale a/c isn't blowing straight on my head. I had to take the day off, since I can't pretend to be productive. And tomorrow I will go to acupuncture, so maybe that will help. But I can't help but worry that my heart is giving out, due to the adriamycin. I've learned enough to know that I need to ask about the effects of radiation on my heart since my tumors were in the left breast, and a small bit of my heart will be exposed to radiation. I wish someone had told me that when I was making my chemo decision. Just think, I might make it through all this and then have a heart attack when I'm 45!

I know that sounds morbid, but cancer does that to a person. Physical weakness begets emotional weakness, especially when you're young and independent and used to being able to juggle a million things, like me. There is farther to fall when you're at the height of good health and it gets stripped away. So you do things like read the obituaries. I always liked the big stories in the obits, but now I read the little ones. It's not just out of curiosity for the interesting things people do with their lives. I end up thinking things like, well if I died from cancer at 60, that wouldn't be SO bad. Or, wow, I've already lived longer than that person. Or, I wonder if I will have any grandkids? How long will I be married?

Now don't get me wrong. I am not some morbidly depressed person all of a sudden. I have been exercising, as I said, and working, and doing what I can with the kids, and seeing friends and family. I am not a recluse. I actually think this obituary stuff, and the mind wandering to the unthinkable, is a totally normal reaction to having something like cancer--but again, you're not supposed to admit it. When you're having a conversation with your friends about some dumb movie and in the back of your mind you're planning your memorial service, you're never supposed to say that out loud.

To me, that two-track mind is just the mental version of the way that cancer physically represents itself. On the one hand, it's obvious that I have cancer, because, well--I'm bald. And I have scars on my breast and under my arm. Of course, few people see those (except for everyone who is reading this blog). But everything else that's going on--my weight struggle (which is very minor, considering), my blood pressure, weakness, insomnia, nausea and vomiting, hemorrhoids, photosensitivity, lack of sweat and tears, headaches, etc.--no one knows those things are there. That's the part of cancer/chemo that you just experience by yourself. As far as anyone else knows, I could be making these things up. (Apparently, someone has done that. A co-survivor posted a story on facebook about a woman who faked breast cancer, down to shaving her head and eyebrows, to get money out of some local families and charities.)

How about if I give fake-cancer lady just a few days of this "gift" to get a few days of her normal but for whatever reason unfulfilled life? Because outside of cancer, or more accurately chemo, I have a pretty fulfilling life thank you! I would rather not have the attention. I would happily give this whole damn thing back. It is so hard to feel like this when I felt so healthy just a little over a month ago. Chemo just cuts to the quick--I've almost forgotten about the issues that worried me before I started, because now I'm just focused on things like: can I see/focus enough to write this blog? Should I climb the stairs? Why can't I hear? What can I bear to eat?

And finally, how can I be a normal mom? Lenny in particular has really been having issues lately. She's been having meltdowns, trouble sleeping, waking up crying. She's making up symptoms--saying her stomach hurts, or her head hurts, and then forgetting about it. Now she's 4, so she's not like the fake breast cancer lady. But it's frustrating to me. I want to say "you're healthy! it's no fun being sick! stop pretending!" And yet I know she doesn't know why she's doing what she's doing. I know she's scared, and she's always talking about when I had hair. It's hard for me to comprehend how things have changed for her when I'm so focused on the changes I'm dealing with in my body.

So I guess this is just my place to vent about how we're pretty overwhelmed at our house. We're keeping it together, and I know that people have much harder situations than mine--some people do this as single parents, children have cancer, some people have no support. On the other hand this is my blog so I can only really talk about what I'm dealing with, even though I can recognize my comparative advantages.

For example, Augie is not just a handful, he is about 10 handfuls. He's a very happy kid, but he's busy, and rough, and he eats and poops constantly and can't communicate yet, which makes it hard. I will admit that I do a lot more with Lenny than I do with him, and maybe someday he will resent me for it. Lenny is freaking out right now, and I try to talk to her about it, but she just denies that she's worried. Or maybe she doesn't even know she is. I wish she was more oblivious, like some other 4 year olds. She knows exactly what's going on, and yet I don't think she knows how to process it. I am at a loss as to what to tell her, and I'm also at a loss as to how I try to have a regular mom relationship with my 14 month old when I am at risk of dropping him if I pick him up.

So instead of actually figuring it out, we look at pictures. See here? Look how happy you are! Look, daddy loves mommy's bald head. And finally, wait, don't look at that one, that one's for me, but that's what breast cancer looks like. No makeup, no hair, no clothes. And yet--it doesn't look so bad, does it? Like one day I might look back and say, that does look like me, stripped of some of the conventional adornments. This did really happen--it's not some sort of cosmic joke!

Thursday, August 5, 2010

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.

Sunday, August 1, 2010

Day 88

I have spent the last few days trying to get used to this blinding white head of mine. I guess after 33 years protected from the sun by all that hair, my scalp is just not used to the elements. I still kind of hate how it looks, and I much prefer these pictures of me with my little GI-Jane look. This is more Jane Curtain-Conehead if you ask me. I have gone out in public bald, and I have received many more stares and some comments (a little boy perched on top of his porch railing, looking like he was going to plummet 10 feet, shouting "Why are you bald?!") and it's infinitely harder than having just that little bit of hair.

It's definitely starting to feel like this particular cure is worse than my particular disease. It astounds me that with all of the awareness of breast cancer, all of the attention paid to it, that I am receiving the same treatment as a woman with much more advanced cancer. Where is the walk to support research into what triple negative actually is? I love this quote from an online interview with a bunch of oncologists. The one is talking about triple negative and why that is a bad name. He says "That's like seeing a redhead and saying, there's a non-blonde, non-brunette who doesn't have a beard." That's what I'm saying. What disease do I really have?

Where's the pink ribbon campaign geared towards making a breast cancer chemo that doesn't make you lose your hair, your fertility, your sexual function, your mind, and your toenails? There are many chemos out there that are less toxic than what I am doing, even for cancers that are more advanced or in deadlier areas of the body. It doesn't make sense to me. This is literally called "cut, kill, burn," this treatment that I'm doing. It comes with huge risks, and the things that are most obvious, such as hair loss, are actually just physical reminders of what the medicine is doing--killing many of your healthy parts. And not everyone who goes through chemo goes through a chemo like this.

Barbara Ehrenreich has written this book I need to read called "Smile or Die." Interestingly, in the U.S. we've given it a less-toxic name. It's about how she believes that the doctrine of positive thinking that permeates our culture has had huge negative impacts, because it enables us to blame individuals for the things that happen to them rather than look for systemic causes. I haven't read it yet, but she starts her research from her experience with breast cancer, when she was constantly being told she should be grateful, to see cancer as a gift, to fight it! and join the sisterhood and everything else. And she asked, well, why isn't anyone else pissed off that they don't know why breast cancer rates are skyrocketing, especially among young women, why they haven't figured out better treatment options when breast cancer is so curable and survivable? Why are we swatting mosquitoes with a sledgehammer?

And that's a great metaphor. For someone like me, it's as if you thought you saw a mosquito on your hand, so you took a sledgehammer to your hand, breaking all your bones, only to find there was no mosquito in the first place. And your response is supposed to be, thank you, may I have another?

I have so many other questions about breast cancer treatment. Let's talk about everyone's favorite cancer poster child, Lance Armstrong. Now, while it drives me crazy to hear about this fight, and battle, and everything, and I cringe when I read his statement "cancer is the best thing that ever happened to me," I don't begrudge the guy his horrible situation. At 25, he found his testicular cancer had spread to his abdomen, lungs, and brain. He has never publicly said anything but negative things about chemo. But--here's what gets me. He had stage 4, metastatic cancer. He finished his treatment and went on to win all those damn bike races. If breast cancer becomes metastatic or is initially diagnosed as stage 4, women are often told that they will be on chemo for--get this--the rest of their lives.

What the hell is the difference? Lance had cancer in the BRAIN. He went on to date some rock stars and have babies and become world famous. Women with metastatic breast cancer, or even early stage breast cancer, are for some reason put into another bucket entirely. No amount of pink advertising will make that sit right with me.

Right now, I have no cancer in my body--none. Cancer caused me no pain or physical suffering. Surgery had its issues but those lasted merely days, with the exception of the scars and the potential for my left breast to be slightly disfigured, or smaller. So I became cancer free and started on a path to destroy a healthy body.

I'm going to continue with the treatment, since there is literally nothing else for me to do, being the redhead of the group, the triple negative one. But I absolutely dread the idea of my next a/c chemo on Wednesday and what it will do to me for the week after that, and the potential for what it could do to me forever. I try not to think about taxol, the chemo I will do in September and October which is supposed to be much "better" but often causes excruciating bone pain, neuropathy, and can make your fingernails fall out completely.

I mean, really? I can't imagine that in 30 years we won't look back and say, that was a bad idea. But right now I just try and hold on to these 6 or so "good" days that I have between chemos. I got my appetite back last Wednesday, and even ate some pizza on Friday, much to my astonishment. Besides the bone-dry nature of my whole body and this shiny white head, I feel almost normal. The torture is in having that feeling, only to voluntarily surrender it again in a matter of days.

I know that I write a lot about the bad aspects of chemo in this blog. There's actually a reason for it, and it's not that I'm just a big complainer. It is the hidden aspect of breast cancer that no one wants to talk about. I feel like as a culture, there is an aspect of cancer that we just cannot bear to discuss. We are more comfortable talking about death than talking about this other thing. And that thing is suffering. We are a society that is convinced that suffering is unspeakable and terrifying. And yet everyone suffers in their lives. But hell if you should ever admit it. I go searching on breast cancer blogs for people to talk about the realities of chemo and I get these one sentence ominous statements about the "unbearable pain" or "humiliation" of treatment, surrounded by paragraphs and pages about the great things learned from the cancer experience. Where are the details, the sharing of pain? When you're pregnant, there is nothing that is unspeakable, no experience, no matter how personal or even disgusting, that you can't talk about with other pregnant women. Women will talk about their labors, episiotimies, hemorrhoids, constipation, breast engorgement, lack of libido, you name it.

You have breast cancer? Don't talk about the bad stuff, you're supposed to be grateful to be alive. Well, yes, I'm glad I'm not dead. But that's the key, right? I'M NOT DEAD. I don't want to feel like I am half the time I'm trying to cure my disease. And there are some things that have happened to me through chemo that are too personal to even ever write about here. It's hard--it's isolating.

I have to say that it does seem like part of what the positive thinking-mantra does is get you to be complacent so you will take this shit without complaining. Don't ask questions. I feel like it infantilizes women. We talk so much about breast cancer, but if you have it, you get a pat on the head and are told, here's what you should do. If you ask why, you are told, well, because. I will always hold the pictures in my mind of the times when I did lose my shit in front of doctors or nurses, and screamed, or cried, or told them I wasn't going to leave until they answered my questions or told me what I wanted to know. The surprise was palpable. She's mad, she's upset, she's questioning us, she's stubborn and maybe a little crazy, they're thinking. This is not how it's supposed to go.

And yet, each time I did that, I got a little bit of what I wanted. Being happy, or positive, didn't get me that. Accepting my treatment course without question did not get me a reduced chemo dose that wasn't based on a made-up ideal weight for someone else. It didn't get me an earlier second surgery date, or a guarantee that I could do that surgery after the mammograms showed the "dermal calc" that almost led me to mastectomy.

Sometimes these seem like pointless victories, and sometimes they seem like the only ones, so on my better days I'm proud. And I love the doctors who are out there who just want to treat the disease, even if I think their ways are imperfect. I don't want them to treat my attitude or my psyche. I was fine with those the way they were before, thank you. One doc on a message board says that he tells his patients, you can be as pissed off or as happy as you need to be. It won't make a damn bit of difference to your tumor.

I lived with my tumors in harmony for many years, during which time I put my body through a lot, including pregnancy and nursing. Once the cancer was discovered, it was necessary for me to believe my death was imminent in order to do what I needed to do. If I questioned needing chemo as a stage 1 patient, I was told, we want to save your life. But I'm not dying, not today. I really think that no one would do chemo if they weren't convinced death was the only alternative. I believed that once, but now I'm not so sure. I've already gone down the path though, so I'll finish it. I just can't say that if this ever comes back that I would do it again.

Now that I've finished my chemo rant, I wanted to say something about the last blog. Gabe has said to me that sometimes he is jealous of this blog. He feels like he finds out things about me at the same time as everyone else, and he should know me better, because he's my husband. And I know that this blog actually has the potential to pull me farther apart from people, because it is so different than the public version of Katy. I am usually fairly lighthearted, even when I'm into my genocide interests or whatever. I like to talk about sports, and stupid movies, and celebrity antics and stuff like that. I talk about my kids and my job. I rarely get into deep discussions about my feelings and secret fears. I don't do personal things in public, like sing, make out, or cry. I understand if some people just don't know how to relate to me after they read some of this stuff, because it's so heavy.

And the last one was like that. Even now though, a few days later, I can see that experience of Gabe and I in the bathroom somewhat differently. I understand how people see it as beautiful, intimate, strong--that image of a husband shaving his wife's head. And yet that image must be so common. There are thousands of couples who have done that. It is, quite frankly, a moment of intimacy that both Gabe and I could have happily done without.

But there is something about it that sticks with me, thinking about it now. I interpreted Gabe's comment about his father, or lack thereof, as being probably deeper than it was. He wasn't talking about some life lesson he never learned. I think he was saying that he had never learned how to use men's clippers before; that should have been obvious since he was reading the instruction manual before he attempted a hack job on his own hair. I think he was saying, hey, I don't know what I'm doing, I've never used these before, because no one ever showed me how. Once the attempt to clip my buzz failed he actually have himself a very nice haircut.

I'm thinking about the days when Gabe doesn't use the electric razor on his face and goes for the Bic. It's often not a pretty sight. There are cuts, bloody kleenex on his face, razor burn that lasts for days. Three days ago he shaved my entire head--huge heaps of short thick hair--with a disposable razor and a 79 cent can of shaving cream. And I had not one nick, not one spot of blood. My razor burn was gone within an hour.

It doesn't impress me that he shaved my head, that we cried, that it was hard. The image I'm keeping is of me sitting still, watching the whole thing in the mirror. What I couldn't see, the part that really means something to me, is his perfectly steady hand. So when you ask how we're doing over here, we will give you some kind of answer, but that's what you should think of too. That's how we're doing it.