Day 295: We're Off to See the Wizard

Sometimes when I sit down to write this weekly blog, I wonder how in the hell there can be anything left to say. There's no news on the cancer front, which is positive I suppose, and no really strange things have happened in the past week. Unless you count yesterday, when I was walking back to work after having lunch with a friend whom I haven't seen in about two years, as she was in town visiting. Out of nowhere, a guy who looked relatively normal put his hand on my head and quickly swiped it up as he was walking past me, all without saying a word or looking directly at me. This is hard to explain in words, and it was hard to explain to Gabe why this disturbed me--outside of this general theme wherein I don't like to be touched by strangers--until I said "it was like a scalping motion."

So that was disturbing. I'm not sure how that's related to cancer, though it makes me think I still look strange or these things wouldn't happen. I started to feel better about my overall ability to blend in after that weird experience at the bar that I wrote about in the last blog. When I went to vote, the woman at the polling place looked at my I.D. (the picture was taken maybe a week before Augie was born--I look huge!) and said "Hair's gone, huh?" I was about to say something along the lines of yes, I know, this wasn't my choice, when she went on: "Getting ready for the summer! I don't blame you! I'm sick of this winter." Then a waitress at a restaurant up north who knows what I used to look like but doesn't know I had cancer told me "that haircut looks really cute on you!" So perhaps I'm not such an obvious Cancer Girl as I thought.

I have been thinking about cancer not from my own perspective recently, but rather from other people's. Lenny has been asking a lot of questions about whether things happened "before we knew you had cancer." I always answer her honestly and then I say, but why does that matter? She never explains. It makes me wonder how different I am, how different I look, and what that means to my kids. I was looking for pictures of us before we were married so that I could show Lenny that I was not really that different even before she was born. I only found a few photos. There's a huge gap in the digital photo library between right after Gabe and I met in early 2003 and when we went to visit my brother in Hungary in 2005 8 months after we married. I think the photos just haven't been organized.

So I found this picture of me in a swimsuit, taken two months after Gabe and I met when we went to Baraboo, WI, for the weekend for his birthday. This was supposedly the trip when Gabe realized he wanted to marry me, though luckily for us he didn't say so because that would have freaked me out so early in the relationship. It had something to do with me being a nerd. The story goes that I was looking at the sunset and instead of saying something romantic, I asked him if he thought it was weird that the sun looks like it is moving down in the sky when really we are spinning away from the sun. Apparently this is the type of thing he wanted to say but didn't because he thought I would make fun of him. So when I said it, he knew he would ask me to marry him one day. About 8 months later, he did. Eight months after that, we got married.

Anyhow, I was getting ready for water aerobics right after finding this picture last night so I posed like the picture and had Gabe splice them together. The idea was to show that mommy is still mommy, pre and post-cancer. However, I didn't show Lenny, even though Gabe said, wow! you look the same! Because truthfully, I just don't see it. When I look at this picture, I think, huh. Those look like two totally different people. I was 27 in that yellow suit, I'm 35 in the blue one. I've had two kids in the meantime and a lot of life has happened. But that's not it. I just look completely different to myself. Looking at that young woman on the beach, I think, she can't see yet how life will change! She doesn't know that in just a few years she will get pregnant for the first time, but she will also have cells start to mutate in her body that will lead her on a path no one wants to go down. She is, quite frankly, someone else.

And it's this ability to separate myself from myself that leads me to think about technology, about this particular format that I have chosen as my own kind of selfish therapy. This computer is like my own little wizard, bringing this strange experience of mine into other people's consciousness at the same time that it brings me a little bit closer, somehow, to myself. It is because I write this blog that I don't feel that I need support groups or therapy. I can give voice to things that I would never say out loud, even if I was paying someone to listen. And because it is public, other people know I've said it, so it must be true. It's immensely helpful in that way, though as I've said, it's alienating too. Or maybe it's just cancer that's alienating, not the fact that I talk about it. It does seem like people talk to me and interact with me more now than when I was in the throes of chemo and I was miserable and looked scary, or if not scary, then at least bald.

While cancer is hard for those who are witnesses to it, I still contend it's infinitely harder for those who actually have it. There is so much to take in, so many decisions to make. Every aspect of it is overwhelming and it is so important to feel that you have information at your disposal. In fact, cancer is one of the more isolating diseases in modern times, due to the huge fear factor associated with it. And yet doctors all tell you right after diagnosis not to read, not to go online, to avoid the Internet.

These people have got to be kidding. On the one hand, I understand the sentiment. I would have never known that triple negative was "bad" if I hadn't looked online, because at Northwestern they focus on stage and grade, not type, when telling you about your chances of recurrence and survival. It might have been better not to know about the rare and aggressive nature of my type of cancer. On the other hand, no one told me much of anything, and I was desperately searching for answers. I have done so many convoluted google searches that I wish I had kept track of them.

I didn't do that, but I can discuss some of the searches that people have done that led them here. I know I've mentioned a few of these before, but I want to spend a little more time on the loaded word "searching" in this week's blog. I'm especially fascinated by the very general searches ("lumpectomy blog," "blog+lumpectomy," "bald woman") that lead folks here.

Why is this interesting? Well, I don't show up in the first 100 hits, or maybe even 500 hits--I didn't check that far. And I only see these search terms in my blog stats if someone actually views a page of my blog through the search. That either means that someone is looking for something very specific and is hell-bent to go through a lot of sites to find it, or it means that someone is spending hours looking through all the sites, poring over the words, trying to understand what she has learned about herself and her new life. Either way, it makes me think about cancer as something that even I experience outside of myself, in this new world, out in the ether. Something that is so personal, so emotionally and physically damaging, is also experienced virtually. I find that interesting.

These searches make me think about the people behind them, and they bring out different emotions in me. There are those that make me feel proud, that make it seem worth writing about something terrible if it helps someone else understand what is in store, at the same time that they anger me because it should be doctors who answer these questions, not cancer survivors:

"can thin small breasted women have a lumpectomy"
"how soon do you wake up after lumpectomy"
"does being thin affect radiation for breast cancer";

There are the image searches, which inevitably lead people to my GI Jane blog (the picture of me in the Meg Ryan wig I never wore more than a handful of times is especially popular in Germany):

"chemo shave"
"bald women with cancer";

There is the one that makes me want to shake the hand of the person searching:

"what to say to someone who is having lumpectomy surgery";

There's the one that I would like to send to my oncologist as proof that I am indeed not a "spurious result:"

"paclitaxel heart palpitations the next day";

There are searches that make me want to say, in all sincerity, good for you! Until I realize that the woman writing must have been putting these words into google because the result she experienced, however welcome, was still unexpected and confusing:

"after my lumpectomy I felt great and had lots of energy";

There are even some that make me want to contact the person searching and tell her to find a new doctor:

"lumpectomy arm has IV needle";

There's the one that makes me laugh, that tells me that either the person was specifically looking for my blog and forgot the URL, or he or she is my secret soulmate and Gabe had better watch out:

"It's all over but the shoutin' cancer";

There are those that almost make my heart stop as I remember so clearly what it was like to go through these things:

"waiting for BRCA results;"
"felt like such a fake" (that is such a general sentiment that I don't understand how it led to my blog, and yet there is nothing truer than those words when I think about myself wearing a wig);

There is my all time personal favorite:

"How to look amazing in just one week!" (this search led to my "Just one week later" blog after radiation was finished, when I looked like hell with no eyebrows and chicken little hair. I like to tell myself that I can answer this question expertly at any given time, however);

And there is the one that pains me to read, because it cuts to the quick:

"young cancer survivor unable to picture old age."

All of these words have other words underneath them, other meanings. This web searching that we do coincides with all of the soul searching that cancer entails. Can someone please answer the unanswerable questions? Can I get a witness? I wonder sometimes where my searches are, what would happen if I put my most personal questions into the cloud. What if I searched for this: what do you do when your husband is crying because your daughter was asking what she will look like when she is 18 and they discussed whether she would be taller, fatter (her word), have longer or shorter hair, and she said she would have long hair, unless she got cancer and it fell out?

What, if anything, would I find?

What would happen if I did a search for this: I was so proud of this same daughter when she played the lead role of Dorothy in the Wizard of Oz play at her school today, because she remembered all of her lines and wasn't shy at all, and I was proud of myself for finding the dress and the shoes, and I wonder what she will look like, and be like, when she grows up, so I couldn't help but just cry during the show, and not out of happiness but a real, deep, penetrating fear that I will never get to know her as an adult because I will die too young, but 30 seconds later I was laughing and joking with the other parents?

What, if anything would I find?

I don't know. I have finished searching for answers about breast cancer, at least for now. I am glad, however, that this strange rambling vehicle I'm using to express my thoughts has led some others closer to those elusive truths that it would be much better to never learn. In closing, I don't say this often enough--thanks for reading.

Day 288: Almost Normal

This has been a week of change in many ways. A change of pace, a change of scenery, and a change, or several of them, in me. I'm writing this from the north woods of Wisconsin, the only place we ever go on vacation anymore, and a place we haven't been to since the beginning of July. That means that the last time I was here, I had hair--lots of it, and I was a few days away from my first chemo treatment and I was terrified. It was summer, we went swimming, I had a tough time finding a bathing suit that didn't make my left breast ache so soon after my two surgeries, and Augie had just started walking.

Things have changed. It's winter, and even though we had a great thaw (60 degrees in Chicago yesterday, I'm told, though we missed it) to follow our great snow, word never got out up here that spring had arrived. Yesterday it was as warm as we could have hoped it would be, somewhere in the mid-forties. We got up here in record time--less than 6.5 hours, after stopping to eat and stopping for bathroom/diaper breaks--because Gabe thought we would be able to see the arora borealis. It turned out that the original predictions were off by a day, so they were visible last night instead of Wednesday night. It was so foggy yesterday that I could hardly see as I walked down the road that would have been pure mud if it wasn't pure ice. But then the fog cleared, and we kept looking for the lights, but the moon was so big and so bright that we couldn't see anything else.

I love the darkness here, and the stillness. I love how there is nothing to do, and everything is far away. No one is up here in February, so my walks become entirely different than they are at home. It's just me, and I don't run into anyone, or see any cars, or need to stop at traffic lights. There is no sound, except ice cracking on the lake if you get close enough. Tonight we parked the car right on Lake Lucerne so we could watch the moon rise over the water. It was the largest, brightest moon I have ever seen. It was so magnificent that young boys left the bar and walked out onto the pier to watch it too. Augie shouted "moon!" on the long drive home and Lenny said she liked when the moon went behind the trees because it looked like the tree branches were drawn on the moon itself.

So it's winter, and that is different. And I don't have much hair. Augie runs around like a madman, and he has just learned how to jump with both feet. The memory of him teetering around gingerly is as far away as the memory of me as a young mother with her whole life ahead of her, unafraid of the future. Lenny reads silently to herself in the car, until she pauses when we discuss going to our favorite restaurant on Lake Lucerne and she asks, "was the last time we were there before we knew you had cancer?" Oh my child. Don't let me forget that you haven't forgotten. What is there to say? Yes, you stayed home with Grandma when we went last summer so the last time you were here was before we knew I had cancer. OK, right, she said. These conversations are different than what I imagined discussing with my not-quite 5 year old. Moreover, my cancer treatment is, hopefully, or at least for now, behind me, rather than looming ahead of me. I have lost the things I was going to lose due to chemo, except for the fear of losing them again.

Because things have changed. After my breast felt like it caught fire 10 days ago, I started to notice that things were different in me. I didn't want to say anything aloud because I didn't want to jinx it, but my hot flashes started to diminish in quantity very rapidly. Then a day went by when I didn't have any at all. It happened just like that. Other things have started to return to normal as well. I feel my old sexuality coming back. All of a sudden, after being afraid I would be stuck in some kind of damaged body forever, I am almost at the same level of sexual function and desire as I was before chemo. I am not exactly like I was, but almost.

How did this happen, in the blink of an eye? I was desperate with hot flashes, depressed about my sex life, hating my hair, and now...things are coming back together. This is where you realize what a big gap there is between normal and almost normal, however. Nothing is as it was. And yet it's close enough that I just can't imagine having to go back and lose it all again, or worse, find out that my back pain really is something else and enter into a new abyss of advanced cancer treatment. I remember writing about the Flowers for Algernon effect when I was doing chemo. I feel like that now. I can feel myself coming back, my body coming back, and I think, how dare you try to take that away from me!

That's what I am thinking about now, how things are all of a sudden almost normal, which shows that they are not really normal at all. When things are normal, you don't think about them. You just live your life. I hate thinking that consciousness, that deliberate thought, is a sign of difference, and yet it seems to me that it is.

I had an experience last weekend that brought all of this home for me, and part of me wants to write about it, and another part of me knows that I will not be able to express what I want to say well enough and the whole thing will sound ridiculous. I will give the short version, and see what I can make of it. The gist is that while out on a girls night, a very drunk guy was flirting with all of us, and seemed interested in me in particular. He gave me his number, tried to take me away from the table, told me how pretty I was, what I great smile and a nice face I had, and all of that. I am not a fan of being hit on in bars, but the way this whole thing happened and the bizarre things he said to every one of us was entertaining. He told one of my friends later that he really wanted to talk to me, so I decided to talk to him right before we left. He asked, where do you want to go? Right here, by the door. Are you sure? I won't hurt you or anything, do you want to go somewhere else? No. OK. So he took my hands and looked at me and said, I know about your illness. I understand. My dad is going through this right now with non-Hodgkins lymphoma.

He said a lot of things. How he could look into my eyes and see my struggle and that's how he knew. That I was so beautiful, and he took my hair in his hands and said, and I love this. That I was a fighter, that it was something you really had to power through and you had to be strong, that his dad had been a fireman for 30 years and this is the hardest thing he had ever done and people don't understand.

Since I am writing it, I must remember it. But after he said the word "illness," it was like he was talking to me through a cloud. Here I thought I looked normal enough to "pass," that a guy might actually see me and think "she looks pretty good, " not, she looks pretty good...for a bald lady, for someone with cancer, for a sick person. But no, he needed to talk to me about cancer and bare his soul to me in that drunken way when people tell you personal things they would never tell you if they were sober. My friends were standing an arm's length away and didn't hear the conversation through the din, and I thought of keeping it to myself. I told them though, and I told Gabe the whole story when I got home. He said one thing that made me feel better. Something along the lines of, well, either way, whatever his intentions, he noticed you. People notice you and take an interest in you. There are worse things.

I wanted to run away from myself right then in that bar, from this cancer girl that I have apparently become. I have decided to tell myself that there were two things happening there--he was attracted to me in the first place, and then he figured out I had cancer. I want to believe that it wasn't obvious right from the beginning, that there is no red C on my forehead marking me for life. This might sound funny coming from me, the girl who walked around bald as a cue ball for five months, who never bothered to wear wigs and who only drew on eyebrows for a particularly bad two week stretch sometime in December. I never tried to hide cancer, or chemo. If people ask me about it I tell them. When we have a sub at the gym who doesn't know my limitations I tell them I can't do certain things with my arm or my chest. The male sub has never asked, but one of the women did, and I said breast cancer, and she looked at me with that look and didn't say a word. But after hearing that word Illness I felt so unlike myself that I didn't say hardly anything. I just let him talk at me, and I wanted to say, what if you had been wrong? And then I wanted to say, one of the only things about my appearance that hasn't changed from this is my eyes, and if you see struggle there, it was there before cancer. In the end I didn't say much though, and I acted like someone else.

I am that woman, and I was always that girl, who doesn't trust strangers, and I never let them near me. I have never in my life given my number to a stranger, except once when I was 14 years old and the 16-year old usher at a movie theater asked for it. And of course I didn't give this guy my number, but I let him touch me, touch my face and my hair and kiss my forehead. That is not me. I've been known to smack my own husband if I don't want to be messed with right then. I was just kind of lost in the absurdity, all over again, so I stood there. I've never had an experience where I received so many compliments--some that were normal, the kind that men give women when they are attracted to them, some that were much deeper--and felt so sad about it afterwards.

I guess that story isn't so short. I might regret putting that out into the ether, because I feel like I'm admitting to being some kind of freak at the same time that I sound vain and petty, but then again, I have always contended that I would keep it real here in cyberspace, so there it is. Every time I think I am going to have a normal experience, there is something there that says, not so fast. You have CANCER, remember? And it makes me tired. That is what scares me about getting things back--my hair, my sexual mojo, my ability to sleep without hot flashes. Even the things that are normal are reminders, because you just cross your fingers hoping you get to keep them for just a little while at least. I wrote once that I live my life constantly feeling like I am driving the getaway car. I am waiting for my real life to catch me, so I have to love these moments of relative health and normalcy while I can.

Sometimes when I am being hopeful I think about growing old. Specifically, I think about how much I always thought I would like being old. I will never, ever, believe that cancer or any of the other trials in my life happened for a "Reason," and yet sometimes I do believe that I should get to be old, just because I might be prepared for it. It's as if my body wanted to tell me what it would be like: Someday, you might not be able to walk, or go to the bathroom by yourself, or turn your own body on your bed. This is what that feels like. Someday, your brain might misfire, and the electric wires will get crossed, and the wrong things will happen. This is what that feels like. Someday you will have so many hot flashes that you can't sleep for more than an hour a night. This is what that feels like. Someday your hair will thin and fall out. This is what that feels like. Someday, sex will be something that other people think about, that other people can do easily. This is what that feels like. Someday strange men will compliment you for your strength of character and you will be able to let them touch you because you are so far removed from the normal sphere of attraction. This is what that feels like. Someday, you will have a terminal disease, or an illness serious enough that death is right there in the middle distance. This is what that feels like.

And how exactly does it feel? Somehow it is not all bad, but it is sobering. Older people are so aware of their bodies and what they can and can't do anymore. Perhaps I have been given all these glimpses into old age because my body knew it would never have a chance to get there. Perhaps I will get there. I would like to--I would like to put some of this knowledge to use. I would also like to play a lot of solitaire, and wear mis-matching clothes, and give men compliments the same way I give women compliments without worrying about it, and I would like to call my kids and grandkids who haven't talked to me in a while, and shout at my husband who can't hear me anymore, and go to water aerobics and smile at the young girl who just lost her hair to cancer treatment and showed up at the pool anyway, smile and ask her about her baby, tell her there is something else afterwards that is almost normal, run as fast as the water's resistance will let my aged body and tell her, yes, I know what that feels like.

Day 280: Kiss to an Absurdity

It's been 280 days since my diagnosis, and exactly two months since my treatment ended. Cancer feels so new at the same time that it feels like something I have always had. In some ways I'm still in the middle of everything, as cancer is one of those gifts that keeps on giving. I've been having a tough time lately, though I know that's not what I am supposed to say right now. What makes it even harder is that sometimes I feel so normal that the reminder of everything that cancer means just causes an almost palpable ache.

I will admit, though it's hard for me to do so, that I have been an emotional wreck over the last week. Some of it might be hormones, but much of it is fear--waiting for that first mammogram which I was supposed to do two weeks from today, worrying about my hips and my back, which has been hurting in one specific location in my spine for days. I know that there are people reading who are thinking, just get the damn bone scan already! Yet every time I am convinced I have cancer in my spine, the pain goes away, or a doctor tells me not to worry, and then I don't know what the hell to do. The scans are nerve wracking and they're a lot of radiation in and of themselves, so you don't do them lightly. I still haven't had sufficient reason to schedule one, and I will admit that the very thought terrifies me. I just can't handle the thought of metastatic cancer.

The rest of my mood is just sadness, and tiredness, especially related to menopause. The hot flashes are much better, though they're still there. I'm down to using the estrogen cream twice a week, but even on off days the flashes are manageable. It's the changes in my sex life--or not even my sex life itself but the way that I experience it--that I am just not going to get used to anytime soon. Things have gotten better, but I feel like such a different person, an older person. It's hard to relate to people my age about this, in part because many people just look at me like I'm nuts because we do have such an active sex life for parents of two little kids, and other women have always had these problems, or never had much libido, or whatever. The other day I was feeling so down about this that I momentarily decided that I should just give up on having sex for the rest of my life, since it often makes me sad and reminds me what a toll cancer treatment has taken on my body and my sense of self. Then I thought, but that's not fair to Gabe, so he should find someone else, at least for the sex part.

These thoughts are not rational, and they don't stem out of anything tangible in our lives, as we have been working through all these changes pretty damn well. I know that. Gabe was not pleased to hear me voice these thoughts. We got in a big fight, the kind that couples get into that you instantly regret because you wonder if there's any going back. I ended up admitting to things that are hard for me to admit. I feel unattractive, regardless of what Gabe says. I interpret his life-induced tiredness as lack of interest in me because I am now a strange-looking cancer patient rather than a sexy young wife. Worse, I just feel "less." Less like me, less like a woman, less like the person he promised himself to years ago. Gabe had to admit that sometimes he does feel differently about me, because he worries about losing me and he never did that before cancer. But he still loves me so much, and he thinks I look even prettier now because now he can see my ears, and I am still sexy, and I will live to be old, and all of that. And yet.

We are sometimes walking an emotional tightrope around here, afraid to fall, afraid to look up, afraid to do anything but just look straight ahead and assume we will get to the end in one piece. It's hard on a marriage. On the other hand, it's hard on a marriage to have little kids, especially when you both work full-time. That's enough. This is just that much more. I so want to relate to my girlfriends about the normal stuff. And I can--I can bitch about work and my husband and the "balance" and all that but then in the middle of the conversation I just blank out and think about, well, dying, and then I feel very alienated because clearly something is wrong with me.

I hate when my mind goes all morbid like that. For example, Augie has become obsessed with babies. He loves them, loves pictures of them, and is using his new-found verbal skills to talk about them all the time: Baby! Bottle? We ask him, who's a baby, and he says Me! (This is one of my favorite verbal development stages--when they figure out who "I" or "me" is. What an amazing concept--you can see the recognition in their eyes and it reminds you that we are all an abstraction, all some kind of dream waiting to be spoken). So we indulge him. But then cancer strikes. Gabe was showing him a documentary about babies and mothers around the world. I would normally not even pay attention to something like that, but this time I couldn't stand it. Watching all these glowing pregnant women, happy nursing women, seeing all the newborns. My body doesn't even work well enough to get pregnant, even if I had permission, even if I could ever nurse again. It reminded me of what I had lost and I just started crying and had to tell him to turn it off. Then my son cried "Babies!" and I felt guilty on top of it all.

Cancer brings you to these dark places sometimes, and it's not always for the reasons that you imagined when you were just desperate to get through the treatment. Feeling old is hard when you're 35--there it is, I said it. Maybe that's not a strong, brave, inspirational thing to say, but for me, it's true. I know it could be worse. I know I could be dead. I know that I'm not actually old. But I feel like my body has aged 20 years in less than one year, and that feeling is made tougher by the fact that my short hair apparently makes me look younger. I keep getting carded or hearing people gasp with shock when they find out I'm 35. It reminds me of the compliments I got when I was bald and how those made me feel: Thanks! and Ugh! If only you knew. I used to believe compliments at one time, and I could respond to them graciously. These days I just feel like someone is making a joke, or worse, it makes me think about death again.

I look so young, I am so young, right? How could I be so close to death? Is that really waiting for me? I hate that aspect of cancer. With something like an accident, you realize that you've lived through it, and you can move on. Now there's just some cancer demon lurking, waiting, messing with you, maybe inside you right now and you don't even know it and you won't ever know it until it's too late. So someone says, your hair is really growing back, it looks great! And you're thinking, hair is just dead stuff, but you say thanks, and talk about getting your first haircut someday again just like you're a child.

I wrested myself out of the darkness eventually and I have felt better, though the cabin fever has been compounding the issue. When we left the house today it was -7 degrees. I took a walk through the tundra yesterday for the first time in days. I made it a few miles to the glasses place, where I picked out some kids frames for my tiny face. First, my face had to actually defrost, and then I could focus on the specs. I've decided that with short hair, I just need to focus on style a bit more. When these glasses come in I'll have Gabe take some pics and you can let me know if they look decent. In the meantime, I am dying to go for another walk. The last walk I took before yesterday was on Sunday, and I was crying the whole time because last weekend I was in the middle of the darkness. So my face froze then too. I need a good long walk without icicles or near-frostbite going on, you know?

Because it's tough to go outside, I've been working out more indoors. I've gone to pilates twice this week, the gym at work three times, and rowing once. No water aerobics this week as they're closed. None of this is out of the ordinary for me, and yet I'm thinking about it now and wondering if I did something to hurt myself. All of a sudden on Tuesday night, I had one of the most stressful things happen in this whole cancer experience since I found the first lump, and I am still searching for an explanation. I would almost be happy to blame myself, if it meant I understood what was happening.

My breast was suddenly extremely painful, swollen, and hard. It was red in places. The entire breast felt like a tire. I have a lot of scar tissue on the side, where I had two surgeries in less than three weeks, and that makes it next to impossible to feel lumps in that area. That makes me nervous but I've gotten used to it. This was the ENTIRE BREAST, with huge, golfball-sized lumps inside. The pain was unbearable. I tried aspirin, hot water bottles, massage. I asked Gabe what he thought. He definitely didn't think it looked or felt normal. I left panicked messages for my surgeon and did a million fruitless searches online.

I have had pain in the surgery area for about a month. It has never quite gone away in the past eight months, probably because the amount of scar tissue from both surgeries is pretty significant given the size of the surgery area. Radiation made the pain worse, and I was told this is normal. (I hate it when doctors tell you it's normal. Common, maybe, but none of this is NORMAL). I feel twinges or tightness in my arm sometimes when I work out or carry groceries or lift Augie. But I have never felt something like this. It scared the shit out of me.

I got a call Wednesday morning letting me know I could see the P.A. that day or the surgeon herself today. I took that as a bad sign, actually, so I decided to wait a day and see the surgeon in person. I'm sorry, but a P.A. just doesn't cut it in this situation. Why was I upset about learning I could see the doctor right away? You have to understand that these people are booked for months in advance, especially my surgeon and my oncologist who are the head honchos and leaders of their fields at Northwestern. You're telling me I can see her tomorrow? Good god, am I dying today? Then her nurse called me back later, saying not to worry, but I could come in Friday to see the P.A. She sounded almost annoyed that I had an appointment with the surgeon because she "has a lot of appointments and is going on vacation soon." I guess there is some lack of communication at the hospital and she didn't know I was put on the schedule. I was very nervous, which always makes me feel frustrated with people, and I wanted to say "Well I'm sorry that my CANCER puts a crimp in the schedule! What is vacation like again? I don't really remember!"

I didn't say that, obviously. I tried to be productive at work, I tried to think about other things. Then I went in and saw one of the P.A.s, who literally seemed stumped by what I was saying. My breast is much better than it was on Tuesday night, though it still hurts and is red in places. Unfortunately I couldn't have them feel what it felt like that night. We should have taken a picture. The swelling is down and it is mostly lumpy and hard near the surgery site, rather than all over. The part that hurts is actually away from the site a bit, which is what led her to say "I'm puzzled. I'm going to get the doctor."

This is not a way to make someone feel relieved. The doctor came in, did another intense breast exam and said, "well, that doesn't feel like cancer to me. I don't feel anything that makes me concerned but of course we don't know without imaging." Thinking about the fact that three doctors weren't concerned about what turned out to be three cancerous tumors, I asked a million questions. Could it have been fluid? Maybe. Could it be related to exercise? It's possible. Can this be caused by radiation? Yes, there is even something called radiation recall, where if you get really hot (were you in the sun recently? what sun? I don't go on vacation, remember? all I can hope for is a few days away from cancer and I haven't even had that yet) the area that was radiated can have an extreme reaction. Oh, is that what this was? I don't know.

I just didn't feel reassured at all. Then I got what seemed to be some strange advice. I was supposed to go in for a mammogram in two weeks, and I have been psyching myself up for that. I won't even attempt to explain what it's like to think about these follow-ups because it is impossible to understand unless you've been there. But the surgeon wanted me to cancel that mammogram, which was just for the left side, and reschedule for late April or early May for a bilateral mammogram. Huh? I have some insane issue and you want me to wait two more months to get it checked? She said I could still do the first scan in two weeks if I really wanted to, but then I would be off schedule forever for getting scans.

This left me a little speechless. If I wasn't supposed to have this one, why was I scheduled for it? Do you think I know what the hell I'm doing? I've never had cancer before--maybe you could tell me what the right schedule is! Moreover, this is not a general physical. This is a very emotional, physically uncomfortable and for someone with scar tissue and radiation issues, a painful procedure. On the one hand, I sure as hell don't want to go through more than I have to, if only to avoid the extra radiation. On the other, you're telling me to wait almost three months to find out if I have cancer? What if my breast goes nuts again? I can't feel anything under the scar tissue--there could be a 5 cm tumor in there for all I know. The only thing that distracts me from that thought is the very specific pain in that spot in my spine. Neither is ideal.

So there it is. What to do? Wait, or not? I decided to cancel the earlier mammogram and wait. I might regret it, but that was the doctor's recommendation, so I'm assuming if anything was dire she wouldn't have put it off until then. It just makes me so tired--I thought I was past the point in my treatment where I needed to make a bunch of decisions. I thought I was entering into the "new normal," but normal still seems pretty damn far off in the distance. I thought I was somewhere near "done."

And while I'm not near done with cancer, I am near done with this blog for the night. I always read these back to myself before I publish them, and after reading this now, I have two thoughts. One, it does make me feel better to get some of these thoughts out there. It makes it somehow less cryptic in my own mind, even if it seems crazy cryptic to those reading. It also makes me feel a little satisfied with myself for admitting to some of the really difficult aspects of living with a cancer diagnosis, because so much of what is out there about cancer and treatment for cancer focuses on the hope/inspiration/shut up you're lucky to be alive/it's too difficult to hear about that stuff.

The second thought is about facebook. Where the hell did that come from, you ask? Well, I have said before that I think that this blog can alienate me from people in the real world, because I come across as morbid or depressed or something when in real-life encounters I am almost alarmingly normal for the most part, at times even funny, and entirely capable of talking about everyday, and yes, banal, things. This blog is a gift for me but a cross as well, as people rely less on face to face interaction with me because they "know" about me through this medium. Of course, all they know is how I feel about cancer at the time I'm writing the blog, and that is a very limited scope. There's not a damn thing in here about anything else about me because I am writing this to get through cancer, and as selfish and short-sighted as that is, that's all this blog will ever be--just that piece of me. And yet I've heard many people say "well, I don't need to call you...I read the blog."

Isn't that what social media has done? Made us believe we are connected by cutting us off from each other in real life? Some people think that, though I am not so sure. I think it's amazing how something like Facebook has enabled me to link to something like this google-based blog, which puts me in touch with not only people, but a part of myself I would have abandoned--the creative writing part--if some tech geeks hadn't made it easy for me to use. What a world!

This is a much longer essay, I realize. It's on my mind because we finally watched The Social Network on netflix last night, and besides finding everyone pretty damn rich and entitled before the company even took off (what 19 year olds have family lawyers, or $18k of their own money?) I was left with mixed feelings. Even if the whole movie representation is a crock, I still can see both sides. It would suck to get screwed out of all that money. On the other hand, just having an idea that you have no clue how to turn into anything real is not that impressive. If I could become a billionairre off of ideas alone, that would have happened a long time ago. Someone has to actually figure out how to do the things I think about, and maybe they deserve to be rich if they can do that.

Regardless of what side you take, that movie would make anyone hate Facebook, and America, and even crew teams. I think I must be coming out of my recent depression because instead of hating anything, it made me think, hey, that rowing does look awesome, I hope I get to go on the river soon! And, hey Mark Zuckerburg, did you ever think your idea for voting on hot coeds would be used by a bald, tattooed cancer patient to tell her friends and family about her menopause and swollen tire of a breast? I bet you didn't. But hey, that's America, right? We do many things well, and I do believe we specialize in the absurd. I'll end on that thought, though D. H. Lawrence said it much better than me:

“Reason is a supple nymph, and slippery as a fish by nature. She had as leave give her kiss to an absurdity any day, as to syllogistic truth. The absurdity may turn out truer.”

Day 274: The Great Snow

It would be hard to sit down right now and write something that is not about snow, as I'm a Chigagoan. We had the kind of blizzard the other day that happens rarely in a lifetime. It's the third 18 inch+ in 24-hours snow of my 35 years. The first was in 1979 when I was four years old. Though many people don't believe me, I remember walking to preschool--that's right, preschool was open--with my grandma, and I remember how the snow seemed almost taller than her and the drifts were definitely taller than me. It's possible that the preschool was snowed out for a day and I remember walking the next day, but that seems less interesting, and in truth, we all lived close enough to school that there was probably little reason to close since we could walk.

The next big snow was in 1999, 20 years later (so I missed out on snow days for my entire childhood--lots of big snows but none big enough to warrant school closing). My best memories of that snow also verge on the absurd. My boyfriend decided to try to get home from my apartment--I think mostly because he wanted to see if it was possible, not because he had somewhere to be--and he got the last train going downtown. At around noon. The CTA just gave up after that. I also remember dealing with the residents of my apartment building. I was 24 years old and worked full time, but as a second job I managed a 30-unit building for reduced rent. Boy, could I write a book about that. Anyway, folks were calling me, asking why we weren't shoveling during the blizzard (in 60 MPH wind) and complaining that they were snowed in, trapped. One guy was so insistent on this last point that I had to remind him: "our lobby doors open to the inside. You can get out." I wanted to say, can you just relax and realize that wherever you think you need to go, it isn't open anyway?

I could say that it's cancer that made me slow down this time and not panic about getting places, but in truth I've always figured that in a tempermental climate, weather sometimes just trumps. Sometimes life stops or is different for a span of time, and I didn't need cancer to teach me that, just the midwestern seasons.

This time, during the great blizzard of '11, I got home from work before all hell broke loose. Gabe didn't believe the forecasts, and I blame that on him spending too much time in California. I left work on Tuesday at 12:30, when there was not much snow on the ground but there was already crazy wind. Lenny almost blew over in the parking lot of her school. I got both kids inside safe and warm, and within two hours you couldn't see out of our windows. No matter, I sent Gabe to the store to buy some milk anyway since he was getting home in the middle of it. Through the drama that ensued over the next few days, we only lost our power for about 10 minutes, so it was actually relatively enjoyable for us. The storm was amazing to watch. We really did have "thundersnow." There was lightning, and huge thunder bursts, and the snow was moving so fast that it was horizontal, laying like sheet cake on our window screens. We would have lost every single item in our backyard to the wind if there hadn't been enough snow to keep them buried. Schools--that's right, Chicago schools--were closed for 2 days.

I have felt a crazy amount of cabin fever, having worked from home for the past two days with the kids here. I've been incredibly busy with work, and very frustrated for a variety of reasons as well. Cancer is not the kind of thing that was intended for young, working-age parents. But that's a different blog for a different day. I finally got out of the house last night by driving to water aerobics. Today it's almost 30 degrees, so I went for a long walk (I took the kids to school/daycare so they wouldn't lose their minds). I figured I should enjoy this now before the temperature plummets again next week and we sit in 5 degree highs for days on end.

This was a long introduction to the following statement: February is my least favorite month of the year. It's the shortest, but damn is it also the longest. When I was on modified bed rest for the whole month of February before Lenny was born, I just looked out the window from my bed, with my laptop on my huge belly so I could work from home, and thought about dread. And no, I don't mean I thought about things with dread. I thought about dread itself, because that's what February is like. You think you can see your way out of the cold, but it's dark and dreary and the snow turns black and your boots are worn down and your shovel is broken and the month just keeps going for what seems like forever.

So perhaps that's an explanation for my state of mind, to some extent. I am definitely feeling that post-treatment malaise, that indescribable worry. My back is hurting and I try not to think about it. I made the mistake of looking into the searches that bring people to this blog again (I love "my hair short" and "I want to look like GI Jane" and "can thin women with small breasts have a lumpectomy"). One of them was about triple negative breast cancer and liver metastasis. I was the fifth hit on that one, because of a blog where I talk about the fear of metastatic disease due to the aggressive nature of triple negative tumors. I poked around in the other top four hits and was sent to a site where a woman who was stage 1, triple negative, found out 2 years and 10 months later--after chemo and radiation--that her cancer had bypassed the breasts and gone to the liver and lungs.

This is my absolute worst nightmare, and obviously hers as well. So close to that three year mark! Stage one! Clear nodes! No matter. When people tell me these things will not happen to me, I just smile and nod. Of course not. Everything bad that happens always happens to someone else until you realize that you are someone else to everyone else but you.

Sometimes I think that having three tumors should be a problem for sure, especially since whenever I tell another breast cancer survivor that, she looks at me with wide eyes and says "three? wow." And I know she's thinking honey, you're doomed. But no one ever says that, because how could you? It's tough. I've had several dreams about my upcoming mammogram. The reality is that the BEST place for my cancer to spread would be to my breasts. It's the other stuff that would mark the end for me.

When I'm in the house too long and I feel isolated, or I'm not able to exercise enough to not think at all, that's where my mind goes at times. People talk about this being the toughest time of my life and say I will get over these feelings. I'm sure that's true to a certain extent, but it makes me wonder: is life ever really that easy? We want it to be, we need it to be, we even change our memories to accommodate that desire. But that doesn't make it true.

When I was 4, my grandmother walked me through the snowdrifts. Why? Because my mother had died due to internal hemorrhaging on the operating table after a hysterectomy a few weeks or months before, at age 29. She was resuscitated, they induced a coma, and after a long recovery, she is still with us today. But for weeks she was in the hospital, and I didn't understand. And for months she was in bed fighting to live. So my grandma came to live with us to help out, and that's why she walked me through the snow. Life is never easy.

When I was going through chemo and feeling guilty about how it affected my kids, my mom had an interesting perspective. She said she never felt guilty about missing out on things when she was bed-ridden because she knew she had to get better to take care of us later. No one worried that we would be traumatized or scarred for life. Was I confused, angry, scared, and all of that? Sure, but you know what, I also got over it. I don't believe I had any long-term consequences of that time from an emotional or psychological standpoint. I hope the same is true for my kids.

I think the worst part for Lenny was seeing me bald and knowing how I would feel after chemo. I don't think she ever thought I would die, she just didn't understand why things had to change so much. In the end, it probably helped her with math. 33 days of radiation, I just did my 25th...my four year old looks at me and says, 8 days left mom!

For Augie, being forcibly weaned was arguably the worst part. I never really wrote about what that was like in the blog, though I wrote about it happening. The experience was just too painful to describe back then. My daughter never nursed well but Augie and I had a great thing going there. He was excited and kicky all the time (it's possible that cancer lowered my milk supply and he got frustrated) but extremely efficient and happy at the breast. He had been in daycare for several months by the time I was diagnosed, and he was used to the idea that sometimes we went out at night and he got a bottle from a babysitter. But I still nursed about 5 times a day, and I think only once in his short life did he get a bottle first thing in the morning, when Gabe and I stayed somewhere overnight. Those mornings in early May after I was diagnosed, I refused to feed him the bottle. I just couldn't do it. It was the look he gave me that I couldn't stand. He wasn't angry, or sad, he was just confused. Mom, why aren't you coming in here? Why is dad here?

Because I have cancer, I would silently tell him. And that thing we did five times a day for months? Neither you nor I will ever do it again. It was impossible to be in denial about it in that situation, and I cry when thinking about it even now.

Sometimes I wonder if these weepy times of mine are hormonal, though I think they are definitely normal even if they are not. I've had that monthly glimmer of libido again, though my cycles seem pretty hell-bent on disappearing from my life. It's been five months since my last period and I'm starting to think that Gabe should forgo the vasectomy for sure. What's the point? I still have hot flashes and I still feel like a different person. I look like one too. Who is that woman with the short, dark auburn hair? Yes, I recognize that my hair is red, albeit dark, but there's so little of it that it's hard to tell. I recognize that it's no longer curly. I recognize that I'm smaller. Even when these statements come in the form of compliments, it's hard to know what to say. Yes, I know I'm different. I know there's no going back. What can I do? Rock the earrings, I guess.

It seems that Day 274 is another day for non-sequiturs in this blog. Again, what can I do? Sometimes that's how my mind works: I go from snow, to childhood, to metastatic cancer, to public transportation to womanhood and back again. On some level in some universe I do believe these things are related. Or maybe it's just because I live here, in this strange city.

To complete the random nature of this post, why not throw in another poem? I think I wrote this after the last big blizzard, but it's just as likely that I wrote it after a major heat wave. Either way, it's been about ten years. It doesn't seem worth trying to write something new, because for whatever reason I haven't changed my mind in this past decade. I'll leave you with that phrase Chicagoans always use: "Stay warm."

Choosing Chicago

Really you could live anywhere
occupy space haphazardly,
become worldly and acclimate
to different weathers,
fit your bones
to a more ancient wisdom,
be fluent in a cacophony of languages,
buy clothes for only one season,
drive,
see so much farther across horizons
that always remain,
or learn a new physics
through intricate knowledge
of inclines,
and you wouldn't have to brace yourself
and invent new hairstyles
when the cold or the heat
in their extremes
came rallying through,
you could be so much closer
to concepts
of land or darkness,
and there are things
in the world
you could know about
that would amaze you,
and you could write, then,
about having been
a part of them,
you could learn to
spectate anew
and be made better for it,
you could then remake
yourself continuously,
and choose, and choose
and always move on into
an infinite possibility
of destinations,
you could remember
how things were there,
and there,
you could become
so expansive
it would take years
to get the stories out.
You could, but you choose
to live here because
the love in your blood
requires it.

Day 266: Emily Dickinson's Chicken

I really needed to write this blog last night, when I was feeling down and depressed about this whole cancer nonsense. But I was feeling, well, depressed, so I didn't want to sit down at the computer and get deeper into my thoughts. Instead, I am sitting here writing this today, and while my mood is not chipper (though I have never been chipper, right?) the day was better and I am farther away from that place I visited yesterday.

The short depression was precipitated by the fact that my hips have been just killing me recently. I mean, it's hard to sleep, I bought some aspirin--something I never take, but the only thing that works--and pilates has been tough. I wanted so badly to ignore it and just suffer through it, mostly because the pain was like a jackhammer to my brain, telling me:

"Bone cancer."

I confessed my fears to Gabe last night and he said, well, what should we do about it? I had an even bigger confession to make. I told him, I can't deal with doing anything about it right now. I felt so guilty saying that, admitting that I just need to either assume it's the old wound or be in denial because I can't face the idea of having a metastasis that would leave me with only a few years to live. I am always the one who faces everything and just does what needs to be done. This time, I am so genuinely afraid of what I could learn that I want to enjoy this short time I've had since treatment ended. It's only been 6 weeks. I need more time than that!

The reality is, I think it's rowing that is doing this to me. I've only done the erg twice, and for the few days following each time my hips were just a disaster. I don't think I have the form right, and we don't really stretch after practice. I'm still working out in the gym and not stretching enough. In a normal life, or maybe not a normal one since it's me, but one that took place before May 4, 2010, I would just suffer through this pain knowing exactly what it was. Now, even that somewhat depressing thought--that enjoyable things can bring me great physical pain due to an accident that was outside of my control 25 years ago--is a walk in the park compared to the alternative explanation.

I feel this clicking in my pelvis as I'm walking to the elevator at work and my mind just won't turn off to what it could mean. And then my boss sees me and says Hi, how are you doing? And I find myself momentarily staring at her before I say I'm good. She looks at me a little strangely, but only a little. I play it off well enough.

And that's how it goes. I wait for the elevator like everyone else, but as I'm doing it I sometimes wonder if cancer is waiting for me. I go about my business, but that fear is there, and sometimes it is so tangible I can feel it. I know I am not supposed to say that anymore. Everyone asks me how I'm doing and I can honestly say I feel great. My hot flashes have gotten much better with that estrogen cream. I know that's what it is because I am now in the phase of not using it every day, only twice a week, and they are worse on off-days. But I exercise like a nut, I wear stylish clothes, my hair doesn't look that bad, and people look at me with this obvious relief so that I can almost hear their thoughts: "You look normal! I can talk to you again! That cancer thing was only a scare, a bad dream."

If only. I read all of these tales of people who survive cancer or something else and they start to appreciate all the little things in life or they only see the big picture. I don't think any of these people are real. I always did like the little things the most in life (the nectarine, my book and a chair) and I could see a lot of life outside of my own. But post-cancer, my life is just the same. I still have that perspective--it hasn't deepened, and life is still made up of a lot of little things. Some are just the drudging aspects of life. Work has its challenges. The house needs cleaning, food needs cooking, I need to try to find time to spend with my husband and god help me even my friends. My kids still need raising. I can't ignore all of these things and just smile wisely all the time with my new-found understanding of the universe.

What can I do? Ultimately I think I'm doing pretty well. I started reading the blog from the beginning a while ago and at some point I just had to stop. I actually started laughing. Did all of this shit really happen in the last 8 months? I couldn't finish it. There has been so much to go through, so many changes and losses and so much fear, which is really the worst part. I am already fearing my mammogram at the end of February, because again, I can't handle the idea that I might have to do this again. I am starting to like what I see in the mirror, even. (Though I will admit that while I can see this person in the mirror, or in her athletic bathing suit, or whatever, as a decent-looking individual, it doesn't look like me, like the old Katy, at all. Not to me.) I don't want to lose all of what I have taken back from cancer and go back to the dark days of chemo or face something even worse.

I want to just keep plugging along. I want to keep snapping at my kids and eating ice cream when I said I wouldn't and generally behaving like a normal person. Sometimes it is the little things in life that keep me going. I have been feeling very overwhelmed, in a somewhat normal way. I'm overwhelmed at work since I was gone for three months. I'm overwhelmed as a wife and mother who seems to be keeping everyone together, when I hardly am together myself. I feel like I nag my kids all the time and in addition to the normal guilt anyone might feel, I also feel angry at myself for wasting what could be some of the only precious time I have with them on bullshit.

And then sometimes, I can remind myself that my own feelings about the irrelevance of our day to day lives are actually the irrelevant part. What does that mean? Well, I want my kids to remember me as their mom, not their shaman. I don't want to bring philosophy and contrivance into a four year old's life.

As usual, I don't feel that I'm explaining this right. Here's an example. Lenny has a few cavities, even though we supervise her brushing and she doesn't usually drink juice or eat dessert (because she rarely eats enough dinner to warrant it). Gabe and I got in a big fight about why these cavities weren't taken care of when I was doing my treatment. This fight really blew up, because I feel like I had a damn good trump card for not having to take care of things for once, and now things are more difficult. Then Lenny threw a full-on tantrum the likes of which I've never seen from my child when I took her to get them filled--before any drill was even in the picture; she was just sitting in the chair freaking out. We had to leave, and now I will need to take her to a pediatric dentist tomorrow.

This whole thing struck me as simultaneously ridiculous, annoying, and a waste of time. I had little patience for the fight, even less for the tantrum. I got mad at my kid. I kind of wished I was a drinker for a few hours.

Then I was taking Lenny to gymnastics a few days later and I handed her a letter from that dentist. While we were driving I asked her to open it and read it. I thought she would struggle with it but at least see that the dentist cared enough to send a letter addressed to her, after not even charging us for the initial crazy-child visit.

And then she proceeded to read the entire thing to me. The only word she stumbled on was "convenient."

I could have been proud of my daughter's reading skills. I could have berated myself for being mad at a kid who is generally exceptionally good. She's not quite 5, after all. Instead, all I could think was, she'll be fine. If something happens to me and I don't make it out of this mess, she'll be fine. My yelling at her won't scar her, my best efforts won't make her less fearful. I have never feared the dentist, so I think that's just her. There is only so much we can take credit for when it comes to someone else's life.

What I said to her was "See? That dentist was really nice. She sent you a letter. And by the way, good job reading."

Augie will be fine too and I can finally see that now. He's started talking more. He has turned almost insufferably cute over the last few days, kissing everyone and laughing all the time and generally acting like the happiest kid alive. Who could tell he was ripped from his mother's cancerous breast just so many months ago? Only those who understand that he will never say the word pacifier. He could, and he knows what you're talking about, but that damn thing is still his Mama.

If the unspeakable happened, he'd be ok though. So would everyone else. I need to be able to put it out there that I am not looking at this Elizabeth Edwards-style. I'm not just saying "let me live long enough to see my kids graduate from high school." Because it's about me, too. Maybe I'm selfish, maybe I'm full of it, maybe I should just get over it, but in the end if I'm not all right I'm the only one who won't eventually be able to handle it because it's my life.

As I've said before, it's my life, staring me in the face. While these hips have been torturing me I just tell myself that one day, I will feel a twinge in my breast or a deep pulling under my arm (as I do all the time now) and it will simply be a reminder of what once was a daily struggle. I will do some new exercise, and my arm or my chest will remind me of how it used to be, just as my hips remind me that once I couldn't walk. I tell myself that, but sometimes I have those days like yesterday, and I cry and it makes me feel weak.

Most of the time though, I'm just doing the normal things people do, and I can even pass as a normal person on the street. When men look at me now--and it surprises me every time when they do-- they don't seem immediately ashamed. I get compliments on my hair. I sleep sometimes. And I do weird things like row, which might not be the best thing for my body, but I have my reasons. I spend an inordinate amount of time exercising for someone with my hectic schedule. I do it because every once in a while when I am really pushing myself, I feel my body just cooperate, and I feel and think nothing else. Someone barks orders at me and without thinking my body complies and is at home with itself, something that I have rarely felt, perhaps never felt, since before I started taking medication for epilepsy at age 6. My body is like a Chicago season--I am always aware of my own weather. I rarely have those days when the air is so perfect you can't even feel it. There's always wind, or cold, or heat, and I am all too aware of how my body works and what it takes to put one foot in front of the other.

I cherish those moments when I can trick myself into thinking my body is Hawaii. The rest of the time, I am just living my life, moving along, kind of like Emily Dickinson's chicken. My mom told me this joke and it made me smile:

Why did Emily Dickinson's chicken cross the road?
Because he could not stop for death.

Day 259: Much Ado About Nothing

I am starting to understand what the new normal is all about. Just like with anything in life, cancer has become a part of the things that I think about, and I can't imagine that it wasn't always there. It's like that with kids, when you wonder what you did before they were born, though of course you remember perfectly well what you did, and it was normal too, but it just doesn't seem like YOU. I just can't relate to people who go through some life epiphany due to cancer. Life is full of so many things--things that need to get done, things that come up, that I don't know how I'd have time for any epiphanies. I don't think I've ever really understood the mindset of finding yourself. I remember once when Gabe and I were talking about how people go through that, and I said, I mean, who do you THINK you're going to find? There isn't anybody else there.

And that's the truth. You only get the one vessel, the one time around. Who else do you expect to be there after the dust settles? There's Katy, or there's not Katy, and those seem to be the only options for me. I'd like to choose Katy, please.

Cancer has just kind of melted into my life. That sounds strange, but it's true. Here's an example. I have been having some crazy aches and pains recently. My hips have hurt so badly I couldn't sleep. Now, I'm 35, and that might be one new reason right there. At the same time, I've just gone back to work, so I sit at a desk all day, which I haven't done in months. I wear heels--something I don't do at home (sometimes I think I like going to work just for the train, and the gym, and the shoes). And I am back at the gym, I started rowing, I'm still doing pilates and water aerobics and I work out at home. My body has a million reasons to be mad at me, especially with all the conflicting muscles from the different exercise routines I do. So I contemplate all of these things. And then I think, well, my hips hurt because of that "old wound", and arthritis is normal for me. Another minute passes and I think "Or, it's bone cancer." And then I say that out loud to someone, they give me all the other reasons for the pain, I shrug and keep cooking dinner.

It's just there, all the time, the way every thing else is there all the time that is your life. I never seemed like someone other than me because of epilepsy or my car accident, and yet I know I am who I am in part because of those things. I am still the same me as I was before kids and yet I feel that being a parent has changed me. I feel like life has just changed me, and cancer has just done it more obviously. Everything else is subtle. I think, for example, that I used to be really hilarious. Now I'm not UNfunny, but some of that got lost somewhere down the line, it seems to me.

Or maybe I just got harder on myself. Regardless, cancer did some obvious things--it took my hair, for example. People could see that change, so I couldn't hide what was happening, but is it really so different? I don't really know what I'm trying to say, except that while there's not much new related to cancer in my life, cancer is still here, probably to stay. If not in my body, then in my mind.

Now, mind you, it's there with its not so subtle reminders in my body too. About 10 days ago I started using the estrace, the estrogen cream I mentioned a few blogs ago. The purpose of the cream is for menopause-induced vaginal dryness. You use it every day for two weeks and then twice a week. It's worked for its intended purpose so far, but I also was convinced that it was helping with hot flashes. I had the only kind of epiphany I care too much about recently when last Saturday night I slept for more than six hours--WITH NO HOT FLASHES. Gabe was sick, so he slept downstairs. He came to bed around 6:45 in the morning, at which point I immediately had a hot flash. Ironic, no? So many nice things in life cause this horrible reaction: drinking coffee, having my husband snuggle with me, coming in to the warm house after a cold walk, eating a piece of chocolate. This time, I was actually thrilled when this happened because I realized that I slept all night without waking due to hot flashes! I can't remember the last time I slept more than six hours in a night.

Think about it. I've had terrible hot flashes since September. Before that, hell, until October, I had chemo-induced insomnia. Before that, there was the general insomnia brought on by, you know, worrying I would die from cancer. And before I was diagnosed, I was nursing a baby. So I think it has been almost two years since I had that much uninterrupted sleep.

As I said, these are the things that just melt into your life. I've gotten used to it. I will never get used to the nights with only 2 hours or less of sleep, but 4? I'm good to go then. Six is like an unheard of luxury. Gabe was trying to sleep on Sunday morning since the kids were not yet awake and I was shaking him saying, No hot flashes! I can't believe it! That cream is working on this too!

Pause.

Wait, is that bad? Does that mean I have too much estrogen coursing in my body? Will this give me more breast cancer, uterine cancer, kill me somehow? Is this the reason my legs hurt (not the million squats or lunges)--do I have a blood clot?

Another pause. Nah. Gabe was looking at me like I was nuts.

These thoughts are there, mixed in with the happy ones. I wish I could say that this cream is a miracle worker on hot flashes, but alas, I started having them again the next day. They are lesser in severity, and I have fewer. It could be the cream, it could be that I'm getting farther from chemo. But I know something about my hot flashes now, doctors opinions be damned.

I'm still having cycles. Not periods, but cycles. Everyone and their mother can tell me this is impossible and I don't care, I know it's true. I was feeling some of the other side effects of ovulation--a little bit of my old libido, stomach upset, a few cramps--on the day of my good sleep. Every month I have this few days where I tell Gabe or my mom that my hot flashes are getting better, and I happen to have these other symptoms too. As soon as I say this, the flashes come back. Just about every 30 days. So there it is. My body, my fertility, my woman's hormones are just not going silently into that good night. There's still something there, just a hint, a reminder. Don't forget about me! This is what your body is supposed to do!

Does this mean it's possible that my normal cycles and hormones will return? Who knows. It doesn't seem likely, but how much of this trip has been likely? Not a damn minute of it.

Sometimes I get overwhelmed thinking about recurrence, or metastasis. And other times, I get overwhelmed thinking about the lack of those things. If that was it--all that shit I did for breast cancer--and I get to live the rest of my life, to some normal old age, why is that? Why would I get to be the "lucky" one? What did I do to deserve a life other people never got a chance to live? I mean, I know I can't say that now--I haven't even gone to my first follow-up mammogram, much less made it to the magical three or five year marks, but even if I make it there, these questions are in the back of my mind. Not exactly survivors guilt, but a general questioning of the randomness of life.

It makes me think about how the only things that my oncologist has said to me that were remotely comforting weren't intended to be. He told me at the beginning that I needed to do chemo to lower the chance of recurrence because I was triple negative but also because I was young, and since I could have 50 more years to live, that's 50 years to have a recurrence. He also said to me once that the hope was that I would live a normal life span, unless there are other things that happen, other illnesses, accidents. The guy just couldn't say, we want you to live to be old. You have a chance to see your grandkids. He had to throw that death by other means in there.

But still, I came away from that with this small notion that it was possible. And if so, that is kind of incredible. Here I am, 35. I've built some kind of strange career for myself. I'm married. I have two pretty cute kids. As an aside, I need to throw this parenting moment in here. I have recently learned that my daughter will be playing Dorothy in the preschool Wizard of Oz play. My shy girl! The nerdy one who reads at parties! The one who just today in the car was talking to us about how she complains about eating, but she eats more than she drinks, and she went on to say "whereas Augie would not eat much, but he would drink until he was full." We went on with more of the conversation, but something was sticking in my mind. Gabe said it out loud: "Lenny, did you just say "whereas?"

I got to see that moment. I lived to see it. I lived through that car accident. I came through epilepsy relatively unscathed. I was reminded of that today in water aerobics when a young woman had a seizure in the pool. I was turned away so I didn't see it happen, but I saw two other women holding her up. In all my years with epilepsy, I never had a seizure in the water. I talked to her and her family and I realized how I've seen her for years at water aerobics, and this, like all things, is just a part of life for her too. You keep going and doing things you want and need to do. Sometimes a seizure is thrown in there and enough people pay attention and you don't drown. And after talking about it with some baldish lady for a bit you say see you next week and you go home.

It still makes me wonder though. Gabe has said that he thinks it's unfair how many things I've gone through. Sometimes I think it's unfair how many people go through these things and don't live to tell or just struggle so much more with them.

God I look back on this blog and it's just like some weird figure 8 of mental jumps and it truly seems like much ado about nothing. My mind is just so strange like that. If anyone made it this far in the blog, I would be shocked.

Since few people will be reading, I've decided to include a poem again, because I have actually written a grand total of one cancer poem now. (It usually takes me literally years to share a poem, thus my hope that no one is reading this thing I wrote two weeks ago).

First, I want to explain why I decided to write it. I like this blog because it is a physical manifestation of the way my mind works, and it's funny for me to go back and see the evidence of that. I also like how the tool--publishing on the Internet--brings in other moments of absurdity.

I can look at my blog stats and see what search engine keywords lead people here. I'm not doing anything to advertise the blog, so I'm not very high up on the hit list among the 100,000 breast cancer sites out there. But every once in a while people find me. My favorite search was a google search for "I feel like I'm doing everything halfway."

Some poor soul got sent to my "Halfway to Done" blog about being almost done with radiation. I love the illogic of that and I can imagine the look on that person's face when the link came up and they thought "what the ***?". More than anything, I love living in a world where someone feels that life is just too crowded, so they do a google search with that phrasing, and they end up being sent to a bunch of random sites, some of which might be on point, but at least one of which is a rambling blog with this bald lady in some weird pictures, and they read it anyway and maybe that even makes sense in some universe.

It makes sense in my universe anyway. The mind makes lots of strange associations. One person's attempts for perfection lead to another person's radiation treatments for cancer. Words lead to other words, life to other lives. That's really what this poem is saying. I know that if that's all I wanted to say in this blog, I could have saved all these other words and just cut to these crisp 144. But I'm still experimenting with what I called an exercise in vanity in my very first entry, when I couldn't imagine how day 259 would be, and that it would seem like day 2590 and day 2 all at the same time. Make sense? No? Maybe this will.

Reading a Poem in the Oncologist’s Office

The poet had written maestro,
But I read it as metastasis.

It’s possible he meant master,
But why not change in form, spread of disease?

They fall off the tongue like close cousins.
Perhaps music and suffering are not so far apart.

You might say that my mind plays tricks.
I’d ask you if death is not lurking behind our other words.

Life can be like that now;
Normal is a double-take into a dark place.

If someone says beautiful or brave
I know they are saying interesting or terrifying.

Poets could learn something
From this total loss of control.

How a thing starts is not how it ends.
Your intentions and your meaning are not the same.

Besides, who would question my interest in definitions?
Who would blame me for always reading the last line first?

Day 253: To Row, or Not to Row?

There's not much happening on the cancer front, although I did have my last appointment with my radiation oncologist this week. The entire visit lasted about three minutes. The doctor looked at my skin and said, "wow, you held up really well. I thought you might be one of the people to have a tough time since you're so fair, but you never know how each person's skin will react." I didn't tell him that I didn't take their advice to use Johnson's baby soap on my chest. I used Aveeno creamy baby wash and I was religious about using the Aquaphor goop. I also only used the prescription cream sparingly, and only at the bitter end, since it really is drying. So maybe I helped myself out a bit--until I decided to just rip off the last two pieces of tape after I was finished, in some manic attempt to not be marked anymore, and my skin just peeled off. But no matter--it healed in a few days. If I didn't have those blue tattoos and if there were no lumpectomy scar, you might be able to see me naked and not know I ever had breast cancer. Not that I'm offering, but you know what I mean.

It's interesting how my radiation oncologist never touched me in the entire time I saw him. He never even looked closely at the skin. He would ask, can I take a look? What, do you think I will say no, or be shy or something? Then he would look at the skin from his seat in the chair and give his opinion. I like him a lot--don't get me wrong. I'm just so used to people feeling my boobs all the time and moving my arms around like I'm a Barbie doll. So after his cursory glance, he took my weight--exactly the same as when I started radiation-- blood pressure, etc., and said "you don't have to see us anymore. Happy New Year."

That felt a little strange. You go into a place every day for months, and you hate going, but then when it's over there's a strange bit of morbid nostalgia. Only for a minute though. After a moment's reflection I was back to thinking about my rock star parking space in the hospital lot.

I have also been wondering about how I will continue to reap the benefits of these free massages and pedicures on Wednesdays now that I'm back at work. I work from home on "spa Wednesdays" but it's hard to find the time to get out of the house for that. It's the same with acupuncture, taking walks, etc. One week back at work and I gained a few pounds, all because I no longer have time to just devote to my health and being a stay at home mom. The winter's a drag for keeping in shape, that's for sure. It's so dark in the morning that I wonder how I used to get up EVERY DAY and go for my hour long walk at 5:30. Actually, if I didn't have hot flashes interrupting my sleep, making it so that on a really good night I get 4 hours, I would still do that in the morning. I love being out when everyone else is asleep and it's so quiet you can almost forget you live in a big city.

Speaking of that, most of those who know me well know how much I love Chicago. I love it in an illogical, blind way that enables me to ignore the corruption, crime, pollution and all the other problems. But lately I've been getting fed up. All of our governors, except maybe one, are in prison. We have a circus going on here for this Mayoral race, and the Aldermanic races are perhaps worse. The school day is the shortest in the nation for kids in public school, so I'm going to keep Lenny in Montessori for one more year just to avoid the babysitter nonsense and the scheduling drama that will ensue when she's in 1st grade. I feel like she's applying for college when I think about how complex it is to get into first grade. I also wonder where all of my ridiculously high taxes are going.

So there's my Chicago rant, from the girl who never thought she would ever leave. And realistically I probably won't, but it's in my mind sometimes. And then I remember why I love Chicago. I'm making plans with friends and I say, well, I can't do it Sunday. The game's on. While many of my girlfriends don't care about football, they have lived here long enough to understand that some of us do. I like how people can drive in the snow here. I appreciate the hospitals, and the clinic I wrote about last time. I also love how people look at adversity, and kind of have fun with it.

That's why I think I really am going to do this ROW thing. It's not that I have some innate desire to be on a crew team. I just like the fact that here in Chicago, there are a bunch of women of all ages who took a look at their experience with breast cancer and thought, huh, this is hard to deal with--what should I do? I know! Get in a tiny narrow boat in the freezing, dirty Chicago river and row! Of course that's the right answer.

And why not? I went to my first practice this week, which thankfully was indoors (no boats until late March). I learned that rowing is all in the legs if you're doing it right, which is why it's good for breast cancer survivors who are at risk of lymphedema in their arms. I also learned that I don't think I was doing it right. It's not a natural motion at all. I felt it in my back and my arms as well as my legs, and I was tired as hell. After an hour and fifteen minutes of practice, during which I and the other new lady got maybe a 15 minute break to talk to the coach, I was spent. At that point one of the women said "you guys did great! our first practice we only rowed for about 10 minutes!"

Now you tell me.

I think I'm in pretty good shape, back to work pudge considered. I'm relatively strong for my size and I work out a lot--I went to the gym three times this week at work and I did pilates one day as well. I skipped water aerobics, in part because I was sick with a cold but also because there need to be some days when I actually see my kids at night and don't leave Gabe in charge just so I can exercise. I'm one of these weird people who often watches TV while working out on the Bosu (great Christmas gift from Gabe!) or the ball. But this was such a different use of muscles it was kicking my ass. I got frustrated as well, since I knew my form was off. Every time I stopped to think about good form, I got slower.

But...I have this sneaking suspicion that I am going to love it and I will become insufferable, talking about catamarans and splits and the erg machine and on and on. We were in this old warehouse, and there were about twenty women and two men (the coach also works with a gay men's club). When I walked in, I asked who was in charge, and the coach wasn't there so another young woman showed me what to do. It turns out I am not the youngest one. This woman was 34 and there's another 30 year old. After me, the next youngest is 43, and there are women in their sixties as well. Apparently there was a 28 year old (!!) who just moved away. It sounds like maybe only one of the other women has small kids, which makes sense since they practice three times a week, twice at night. I will only be able to do it once, though if I get into it I might make some Sunday morning practices. It's just hard to get home after the kids are asleep, and they haven't seen me since we all were rushing four different places before work and school in the morning. I think I'm the only south sider involved, though I could be wrong.

When I started to contemplate the fact that most women I meet with breast cancer don't have small kids, I realized something. On the one hand, this is true because most women get breast cancer later in life when their kids are older or grown. On the other, if you are young and you get breast cancer, you very likely will never be able to have children if you don't already have them. It was a striking thought, something I haven't considered outside of being glad that I had my kids already. In a city like Chicago, a lot of people wait to get married, wait even longer to have kids. I was 29 when I got married. That seemed ancient to me, since my parents were done having kids at age 24, but in Chicagoland that's actually relatively young. Gabe and I met at 27 and got married almost exactly a year and a half later. Less than a year and a half after that Lenny was born, when we were 30. Only one of my friends had a kid at that time. Augie was born when we were 33, I got diagnosed at 34 and was told I had probably had cancer for that entire span of time--since we were married. Now I'm in menopause and my ovaries have been killed, and I think about how that must feel if you hadn't even gotten around to figuring out if you wanted to get married or have a family when those options were taken from you.

It's pretty shitty, that's for sure. It makes me feel lucky in a very relative way. There's no luck in having cancer. But at least it didn't stop me from doing some big things that I wanted to do: go to grad school, get married, start a family. I hope it doesn't stop me from doing other things, like continuing to work, exercise, see my kids grow up, have a happy sex life, and grow old.

So this is just to say that I liked this group of women who get together to row without talking about cancer. I like how they didn't need to ask me when I finished my treatment because the state of my hair gives it away. Everyone else in the room had long hair, or if it was short, it was that way on purpose. It gave me a nice glimpse into the future. One woman who did ask when I finished treatment was shocked that I just finished chemo in October. She said it took six months post-chemo for her to have as much hair as I have now. It's strange how these types of conversations are comforting. I have been getting a little tired of everyone commenting on how my hair is a different color, especially because I don't think it is, but mostly because that's less relevant to me than the fact that I HAVE HAIR. I can even comb it on the sides. I have started using conditioner again. I don't have to draw my eyebrows on, and I have mascara back in the rotation. I know I look like I'm at a military boot camp or something, and I know that I was more interesting, more striking, and maybe even strangely enough more beautiful, when I was bald.

But I don't give a shit because now I HAVE HAIR.

It's fun to be around people who know what that's like. It's encouraging to see women decades older than me with lymphedema working out. It's cool to go to a place where your cancer experience is the rule, not the exception, but you don't have to talk about it.

(As an aside, one of the reasons that I put all these pictures on here is that it's useful for me to have this photo-journal of my hair, week by week. I scoured the Internet when I was first diagnosed, after I started chemo and once I lost my hair, looking for some evidence of when my hair would start to grow back. I found one video that a woman did, where she sped up time to show her hair growth post-chemo. It was incredibly helpful and made me a little less depressed. So maybe this will help someone in addition to me, but if not, it's gratifying for me at least! Also I can prove that I really do wear my grandma Marthagene's costume jewelry--who needs pierced ears when I have a drawerful of great clip-ons?)


So what do you think? Can I do it? Am I too small, too much of a lightweight, or too wimpy to deal with the frigid putrid water? Will I ever get the form right? Should I keep my hair short once it becomes a choice for me? These are the deep issues I've been pondering.

Go Bears!