Saturday, May 28, 2011

Day 389: For My Son on His Second Birthday

As a parent, it's hard to be fair. You do your best to treat your kids the same, not to compare too much, and in the end I think it's inevitable that you fail. I am sitting here full of the knowledge that I need to write a letter for Augie for his second birthday, as I did for Lenny a few months ago for her fifth. And yet I really don't know what to say.

So until I can figure it out I'll stall a bit. There are a bunch of things I've been thinking about covering in the blog, but I've been too busy doing those things and living my busy life to find the time. To start, I haven't written at all about my two experiences rowing on the river. The first water practice (we go on the water on Mondays, which is the only day I could ever practice, so that works out for me) the six novices who had never rowed before just watched from the dock. We practiced getting in and out of the boat, which really is just as wide as a pretty small person's body. None of this is intuitive and it is nothing at all like the erg, leading me to believe that the two things might as well be unrelated.

But let me back up a bit. In order to get to practice, I had to find the right spot on the river, which is kind of in the middle of nowhere. It's in Bridgeport, that famous working class south side neighborhood home to the Daley family. You can't actually see the river from the street where you park your car. Instead, you see some chain link fences surrounding a bunch of gravel and weeds. You walk a little farther, and there are a bunch of boats--lots and lots of boats--stored in the middle of the rubble, next to some storage lockers. This area of the city is very industrial, and the river is anything but scenic. In fact, Chicago is the last major city in the country that doesn't treat the sewage out of the river. So over 70% of the water is literally toxic--a toxic waste dump we try to pass off as a tourist destination, Chicago-style. That first practice when we watched the others row, I decided it would be best not to count the condoms, tampons, beer bottles, and other random trash floating past. God help anyone who fell in that water.

The next week, we novices got our chance to row. We all successfully got our oars in, got in the boat, and walked the boat off the dock. There are a bunch of kids from a local Catholic prep school who volunteer for the team, and several of them were rowing with us in our boat. And let me tell you, it was HARD. I felt like a failure for a while, and then I realized that I could do it. If I could watch the kid in front of me and ignore my oar, I could do it. The hardest part is to try not to think about what you're doing. Maybe that's the key to the rest of life too. Just don't think about it too much. Anyway, there we were, rowing down the river while the sun was setting. The river is so narrow on the south branch, and we had run-ins with fishermen in Chinatown, yelling at us when our oars hit their lines because there was nowhere else to go. We had some groupies. I almost lost a shoe off the dock in the lethal water. I missed the following week due to house issues, and then last week I went in for the second time.

They put me in the bow seat, and I had extra responsibility for steering the boat on multiple occasions --leading us to get caught in some trees in a particularly narrow part of the river. I could have felt bad, but I figured I was a woman who had just finished breast cancer treatment six months ago, who had only rowed twice in her life, so I couldn't take too much blame. They had us novices rowing for well over two hours, for forty five minutes longer than everyone else. I had calluses on my hands and everything in my body hurt. During one drill, they had us using our inside arm only to learn how to feather the oar. Doing that just killed my breast, and my chest muscle. (My surgeon told me that radiation weakens your pecs, and that I can expect to have chronic pain in my surgery site forever--that's right, forever). Maybe I'm just that much closer to radiation and surgery than everyone else, and maybe I have too much scar tissue. But man, did it hurt. I was going to say something to the "coach" (the launch following us was led by a kid who just graduated high school, who will be going to Dartmouth in the fall), and then I realized that I couldn't. For a teenage boy, he handles the whole breast cancer thing remarkably well. I have often wondered if he has some personal connection to breast cancer. But I just couldn't say, hey, you might want to avoid that drill for women who aren't far removed from cancer, because damn, my boob really hurts. He had trouble when another coach told us to hold our oar at our bra line, so how could I go there? I know that teenage boys are essentially embarrassed just to be alive, and this kid really does pretty well, considering, so I decided to let it go for the time being.

But hey, here I am, 35 years old, clueless about boats and prep schools and team sports and all the other things related to rowing crew, and I could do it--now I can say I've done it, regardless of how long I can keep it up. The city looks just beautiful if you're a nerdy urban planner type like me and you like reading colorful graffiti and wondering how the taggers get to those places, what the were balancing on, where they came from, and you smell the bread from the factory and realize how hungry you are right after you realize how rare it is to smell something good that is actually being produced in your hometown, and you think about the Chinese immigrant children who hang out after school crouched down over the river and wave to some boats full of women who are in various degrees of cancer survivorship, and some teenagers who probably have much better things to do tell you that you look awesome, and you're so bone tired after you drive home in your one working car to the smaller of the two houses you're crazy enough to own, and your husband is putting your daughter to bed, and you collapse on the couch and think that Chicago is a pretty interesting place after all.

There might be something else I wanted to say before my letter to Augie, but that was long enough, so I'll stop there. Assuming I pass my swimming test this week (I have no memory of how to breathe correctly underwater, though you'd have to be clinically insane to put your face in the Chicago river, so sidestroke or backstroke is more logical anyway) I will keep it up for as long as it makes sense. Until then...

Dear Augie:

Three years ago, we were fairly certain that you would never be born. While we had no trouble conceiving your sister, by the time she was 20 months old and I was ready to think about going through labor again, both your dad and I had fertility issues. While a relatively simple surgery fixed his, it wasn't clear what was going on with me. Perhaps now we know, as hormones must have wrecked havoc on me in conjunction with contracting cancer, but we couldn't know that at the time. After learning that your dad was back to normal, I immediately called my doctor to ask to put me on Clomid, since I knew I hadn't ovulated since Lenny was born. I took those five pills, went in for an ultrasound, and saw the egg that would eventually become you. We were given instructions that day on how often and when to have sex that weekend, and I decided to throw in that night for good measure. Your dad didn't object, and we were later told that against all odds, on that first try, you were conceived.

I can only imagine how embarrassed you will be to read that when you are a teenager. I hope I am around to see it. The point is, though, that I saw you before you were you. I saw that picture of an egg, the doctor told me it looked like a good one, why not give it a shot? And unbeknownst to me, I was looking at you, or the beginnings of you. Two weeks later, I took the pregnancy test as soon as it made sense, and I saw that faint line. We had tried to conceive for almost a year, so I just assumed it was a mistake. I waited a few days, took another one. The line was faint, but not as faint as before, so I went in for a blood test. When the results came in,my doctor was off for Yom Kippur and I talked to the one Catholic doctor out of the twelve in the practice, since most everyone else was out as well. What am I looking at? She asked me. I said, well, I need to know if I'm pregnant. Oh, well you're definitely pregnant, but you're not very far along. What do you need to know?

I'm pregnant? Me? I asked. I sat there in a stupor in my office, wondering how it was possible. And everything about the beginning of your life was like that. I thought you had died early on when I had horrific cramping and all of my early pregnancy symptoms disappeared overnight. It turned out to be nothing but my uterus contracting and pregnancy with you was relatively easy. Then I had bleeding at 26 weeks and had to go to the ER in the middle of the night, while our sick neighbor from next door came over to sleep on our couch so Lenny would never know we had left. That was just a burst blood vessel. I thought you would be a preemie, so I stopped exercising at 36 weeks when I was told you would be born within a week. At 37 weeks, progress had halted, and I went to water aerobics after taking a long walk. My water broke in a torrential flood at 5:30 the next morning, so much fluid it was laughable and could literally have filled our bathtub, and you were born at 2:18 that afternoon. I pushed your sister for two and a half hours, and I pushed you for 13 minutes. She fought to be born healthy, you just fought to be born. You cried right away, nursed right away, and you were completely, utterly perfect. I thought I could do that again, it was so easy.

But aye, there's the rub. I couldn't know then that I could never do it again, that you were my second and last child. Your father and I thought we would be done with two--he had to be convinced to have you after it was such a struggle, and then he wanted another girl. I figured I would be too old to have any more children, after having you at age 33. I just had no idea what was in store for us. With the thought that you were my last baby, I took a six month leave from work, and had a wonderful summer and fall with my adorable son. The summer was just beautiful, like a California summer, and we went walking together every day. I lost thirty pounds in a month and just kept getting smaller as your boy hormones kicked my metabolism into overdrive. I worried about you as your torticollis refused to go away. I took you to physical therapy every week starting when you were three months old, and watched as young nurses and therapists played with you and cooed at you and wondered how they were doing anything that I couldn't. I nursed you every few hours, and marveled at how easy it was. Even when you weren't good at something, like lying on your tummy, it seemed like it was because you knew you would get to it eventually, that you thought this stage was good enough for now. That is how we began to believe that you had been here before.

You laughed in your sleep when you were three weeks old, a full laugh with your whole belly. You scowled before it should have been possible. At five months old you started kicking all the time you were nursing, laughing, talking to yourself, demanding to be moved from side to side every minute. You never got to move past that phase. Other things happened, your parents went through some tough times, your sister turned four. We couldn't wait for your first birthday.

And then, just like that, your life turned upside down before it had even begun. Less than a month before your first birthday, your mother was diagnosed with a rare and aggressive form of breast cancer. Within six days, you were weaned. If your eyes hadn't seemed like those of an old soul before, they quickly took on that tenor, as you looked at me in the mornings with confusion, as I walked past your bedroom in the mornings crying while your dad fed you a bottle.

I wish I could say that I protected you from cancer, but you were so little that I didn't know how. I made sure to never cry around your sister, but I thought you were too little to notice, so sometimes I just held you and wept. How could I know that you would get angry, refuse to start talking, never let anyone else put you to bed, start to call your pacifier your mama when you did decide to say some words? How I wish I knew what could have been different for you if things had been, well, different.

How I worried that you would never know me, that you would never remember me and I would be a story that someone else told you someday. I still think about that, and I wonder if I will be the mother you remember, or if someone else will take that role. Your father will tell me to never put voice to that idea and he will be angry with me for saying this, but I like to think that you will have a mother, and of course I want that mother to be me. If that isn't in the cards, I want to say on the record that I just don't want you to grow up without that influence.

Mothers can teach sons things, it seems to me. We can teach you to calm down, to clean up after yourselves, to not trust in this idea that boys will just be boys and therefore get away with things that girls cannot. We can teach you what women are really like, even when, or especially when, we are not like what many people expect women to be. But I cannot teach you how to be a different Augie. I cannot teach you to be still, or quiet, to be unhappy. I cannot figure out how you know how to use every piece of technology in our house, why you look through a cooler of juice boxes and pull out a beer, or why you love all animals to such distraction.

I can't even take credit for looking like you. Everyone tells you how much you look like your dad. Until last summer, I at least looked like you in the sense that we were both redheads. No matter how vain you might find this statement, it actually grieves me to not have that in common with you and your sister anymore. I know my hair is dark auburn, but I need to face the fact that I am really not a redhead anymore, not like before. Thirty five years of "redhead" being a huge part of my identity, thirty years of pretty hair getting me a lot of things that I wanted and a lot of other things that I didn't, and chemo has, apparently taken that from me. Lenny will remember being with her mother when strangers stopped us in the streets to comment on our beautiful hair. No one will ever call out my hair as pretty now, and I look just like so many other moms in their thirties--nothing special there, nothing distinctive. But not so for you. Now, when we are out as a family, people ask where you kids get your red hair, and while Lenny looks so sad as she glances sideways at me while I wince, you just laugh and say "hair!." Your dad says we picked it up at the park. I want to say that it was the mailman. The real answer is so much worse. I want to say, I'm a redhead, like my son! He got that wild crazy curly red hair from me!

But who would believe that? While it saddens me, it makes me glad for you. You get to look like yourself, like your sister. You don't have to be so conspicuously associated with your mother. You can look like your dad and be handsome in that unassuming way. And you can remind me that there is something in me that you will always recognize, perhaps even if I am not here. You have given me that gift, among many others. You see pictures of me bald, and you say mommy. Pictures of me with long red hair, short dark hair, and it's still mommy. You see pictures of me as a teenager, as a child even, and you recognize me, when I can't even recognize myself when I look in the mirror every day. You see me, when I find it hard to see myself.

You are so much yourself that you remind me that being yourself is not a choice. It is the only option. If you are devious, and fearless, and empathetic and stubborn and happy and a little bit crazy, you probably always will be that way. The same is true for me, and perhaps I am a little bit of some of those things. Regardless of who we are, you will have spent almost all of your life with a mother who had cancer, you will on some level remember being torn away from me, and I hope that you will forgive me. I tried like hell to have you, and then you were here, and if you hadn't been here before, it at least seemed like you were here as long as I could remember. I will always regret that many of the biggest things of your life, like learning to walk, are but vague memories for me in my surgery and chemo-clouded brain. But they are memories all the same, and that is what I hope to have with you--memories upon memories. You are, after all, my last baby, my only son.

Two years have come and gone, and you will remember next to nothing that happened in this formative time in your life. You are reliant on witnesses, on stories. Let this letter, and this blog, be a part of that story for you. If you cannot remember, or if I am not around to tell you, you will know that you were wanted and loved, that you made us tired and you made us laugh. On some days you even made us remember ourselves in spite of ourselves.

Happy birthday, Augie. I love you.

Love, Mom

Sunday, May 22, 2011

Day 382: I hope you dance

Do you ever have those times when you just feel like a bad parent? I've been feeling that way for a few days now. First, because I was away for three days for my conference. I don't know why I feel bad about this at all--traveling was always a part of my job, and the only reason I haven't done it in a long time is that I was going through cancer treatment, and right before that, I had a baby. It's strange to think that I haven't traveled at all really in Augie's life, except for an occasional night away with Gabe or the week I spent away from the family when they were all sick and I was going through chemo and couldn't be around them. I was away for my conference last year too, but that was probably for the best. I was so out of it, being just two weeks from my diagnosis, that it actually helped not to be at home and have to pretend to be normal.

No matter how normal it is, I felt guilty being away this time. In some ways, it was a treat, so maybe that's why I feel guilty. I had a hotel room to myself, no house to clean, no dinner to make, no kids to put to bed. After 13 hour days I was exhausted, but also relatively satisfied. It's always nice to go through all of the drama of a big event, especially if it's your event, and you are the main organizer, and have it work well. It's like planning a wedding--things go wrong, you drive yourself nuts, and then all of a sudden hundreds of people are there, and things are happening, and it's great and everyone congratulates you.

Nonetheless, I had my strange cancer moments, even in the midst of this event that was so far removed from cancer. One speaker whom I recruited, who has known me professionally for many years, didn't recognize me at first. You cut off all your hair! he said. I received so many compliments on my hair, and it was very hard to know what to say. How long have you had that haircut? Um, not very long, maybe a few months (how long have I had hair, I was thinking)? Your hair looks great! I love it! I can't believe you cut it all, I've always wanted to do that!

No, no I don't think you do. Not my way, at least.

Of course I just said thank you, and I was fairly self-satisfied with the fact that I guess I successfully "passed" and in a big way in such a public venue. Neither those who have seen me over the years nor those who have never seen me before could tell that this is post-cancer hair. I waited so long to be able to walk down the street without it being obvious that it was a little weird to think that all physical vestiges of the damn thing have disappeared.

Almost, that is. I still have the pain in my breast and my chest, all the time. It wakes me up when I sleep on the left side. I still have those back twinges, and I get paranoid. I wonder what's going on with my cycles after having three normal ones post-chemo. I thought I was getting my fourth period Friday, but it appears to be spotting or something. At one point in my life I would worry that a strange or missing period meant pregnancy, and now I just think, cancer. Or, menopause returning. Pregnancy is almost too disastrous of an outcome to fathom, with the potentially cancer-causing hormones and the proximity to chemo and everything.

These thoughts can distract me and make me feel off-kilter, and I feel so distracted already, especially with the house. Houses, I should say. It's exciting but very overwhelming, with so much to do. I am not going to encourage anyone else recovering from cancer to go buy another house, but it's an excellent distraction to have a huge project to take up some of the space of this "new normal" that is hard to figure out. If your post-cancer life is exactly the same, I think you just get annoyed with it. Certain things remind you of cancer, other things just seem stupid, and in general you wonder how it's possible for life to be so similar when you feel so different.

This isn't specific to cancer. I went through this as a child after my car accident, and I went through it to some extent after Lenny was born. I went through it after I graduated from college--for months. I had spent my youth with a goal so specific I didn't even realize I had it until I achieved it. I wanted to graduate from college at age 21, never having been married or pregnant. I thought I was pregnant a few weeks before I graduated, and it turned out to be a false alarm, but I remember how it felt to think I wouldn't be able to do that simple thing. Once I did it, I was so immensely happy, and yet I thought to myself, what now? What do I do now? Now, I know you're not supposed to move, or switch jobs or have affairs or do huge things to change your life in this type of circumstance, but it's totally understandable why people do.

In a way, this house is like a scar for me. It's a sign that life is different. I've written before about my frustration over the lack of physical scars for different things that happened to me as a child. I wanted something to mark my car accident, my epilepsy even. Now, I didn't literally want to be "marked," I just wanted something I myself could see that would tell me that that thing really happened, because otherwise some of it just seemed like a dream. I think that's what's going on here too. Post-cancer should be different than pre-cancer. In some ways, all you want is for it to be the same. You want to look the same, have the same friends, do the same things with your kids, go back to your old self. That's the goal. But things shift, and rather than dump my friends or family or have some life crisis, I guess I've found some ways to remain the same, with some new in the future.

It's strange to think about the future, really. Every time I did that for a while, it made me almost unbearably sad. I didn't stop doing it, thinking of the future, but I didn't expect to be in the future necessarily either. I would think about the future, and what I would miss. Lately, I've been thinking a lot about how things were a year ago. Last May was the hardest month of my entire life. I think I can even say that it was harder than chemo. The emotional anguish was just that--anguishing. And now I have this guilt that I don't feel some sense of extreme happiness to not be in that place anymore. It's so hard to explain.

Let me try, though. Lenny had her dance recital this weekend. That made for a chaotic week, with me being gone. I guess Gabe did something with her hair (no makeup, I'm sure) for her dress rehearsal. I came home Friday from my conference totally exhausted, only to do about 5 hours of work to get the house ready to put on the market. I was cranky and Gabe and I got in a fight. Then yesterday we were busy trying to get ready after I met a painter at our new house, and we couldn't find our tickets for the show and one of Lenny's gloves got left behind. She was pretty upset on the way over there. I felt terrible about that.

I thought to myself that it was a good thing that Lenny is so cute, because I sure as hell don't know what to do with her hair, and my minimal makeup application seemed to work just fine. It was next to impossible to deal with Augie through the 75 minute show, since it was during his naptime and he just doesn't understand the meaning of "quiet." (I can't believe I ever thought he wouldn't talk.) We got through it though--Augie made it until Lenny's routine (she was 15 out of 17th, so that was something!). After all of that, we hosted our book club--at our new, empty house. I had baked in the morning, so we lugged some food and drinks over there with a bunch of lawn furniture. We got there, and realized we didn't have the keys.

No matter, I set up the porch, feeling like a fairly incompetent person at that point. Gabe went home for keys, and I started giving tours of the house. Kids apparently find empty houses fascinating. Plus, there's a park nearby, so they went there for about an hour. Gabe volunteered to take them (bad parent feeling again--I would never volunteer to take seven kids to the park), and almost immediately called for backup. The evening was a lot of fun, though it ended with us learning that Augie, who had eaten about half of a watermelon by himself, is apparently as allergic to that as he is to other melon. Holy diaper rash, Batman. Now I know that's not my fault directly, because he has eaten many a piece of watermelon with no problems, but I still felt terrible. He was just crying when we got home, yelling "Butt! hurt!" and he was tired and giving me that scowly face and saying, "No, mommy!" when I came near him. Ugh!

Today we had the same dance routine, though we didn't lose anything or leave anything behind and we got there early. Augie only made it through about half the show though. But here's where I want to explain why I feel like a failed parent--and it doesn't have much to do with all the things I've mentioned already. Those were just the more obvious reasons.

Last year, at Lenny's recitals, I cried almost the whole time, start to finish. I couldn't stop crying during her two minute piece. She was so shy, and so unsure of herself, and I was so proud of her. For one of the finales, she was carried out by her teacher because she was too shy. All I could think was, she is so beautiful and so precious. Will I ever get to see her dance again? How many of these performances will she do, and how many will I miss, because I will be dead? This year, I thought back to the previous performance when a little girl in one of the routines just stood there yesterday, arms crossed on her chest, pouting, and never moved. Another girl tried to get her to join in, and she just glared, looking terrified. They had to pull her off of the stage, and she wouldn't come on for the finale. Then today, she was fine, smiling, dancing, waving. I shed a little tear for her, it made me so happy.

But I didn't feel particularly emotional about Lenny herself. I was proud, even though she was unsure of the steps (I guess it would help to practice...she doesn't seem to need to practice gymnastics, so with our limited time after work and school that might be the preferred sport!). I was happy, she was cute. I guess I just expected to feel some huge sense of relief or wonder, since a year ago I didn't know if I would see her dance again. I expected to feel some overwhelming sense of happiness, to want to just grab her and hold her.

But I just felt normal, normal pride, normal love, nothing more or less. This weekend I continued to get on Lenny's case about all the things I normally do (eating, taking forever to do things, cleaning her room) and I continued to hold her and read to her and tell her I love her. I did her hair in a half-assed way and told her the "special word" for her costume was "tuxedo." I laughed to myself as she played tuxedo wedding with her stuffed animals (she also played planet rescue with the next door neighbor boy, which involves Diego-style rescues, only not of animals, but planets). I just didn't do anything differently, which felt somehow wrong.

Maybe I'm just too tired and annoyed with the Bulls to make any sense right now. I had a great weekend--don't get me wrong. I just sometimes feel strange in normal circumstances, like I'm leading some kind of fake life, or living my life but not well enough. I shouldn't have rushed my daughter, I should have cried with happiness for her, not another child, I shouldn't have felt so glad to have Gabe come home after four hours by myself with the kids today. These are the things I wanted to come through cancer for, right?

Maybe not--maybe my life just as it was, messy and overwhelming and imperfect, was what I really wanted. The song tells us that we should wish for something else for those we love. If given the chance to sit it out or dance, I hope you dance. That is supposed to be the lesson I have learned. But it feels more like this--I hope you dance if you want to, and I hope I get to be there. I might still sit it out. But I'll be there. Right?

Wednesday, May 18, 2011

Day 378: No time to blog

Back when I started this blog, I assumed that the day would come when I wouldn't have any time to write it. However, I thought that would be because I was too sick, or too weak, to sit down at the computer. I worried that I would have chemo brain and that I would be unable to remember how to spell, that I would lose my creativity or at least my train of thought. (As an aside, I received an article recently that verified that the poorly-named "chemo brain" is a set of real cognitive and neurological impairments that some chemos, especially those used to treat breast cancer, can cause for a significant portion of those who take it--for up to five years after they stop the drug. My fear of this was apparently justified.)

I never thought I wouldn't have time because I would be changing a million things in my life at the same time, just like a normal person who is overwhelmed for normal reasons. But look at all that's happened! I'll have a new job at the Fed soon, though before I transition I need to get through the next few days. I have my huge conference starting today, lasting through Friday. I 'get" to stay downtown at a hotel for a while, which will be nice I guess, but the kids already seem to miss me. I'll collapse tonight to watch the Bulls game after a long day putting out fires and dealing with the complexities of getting 200 executives together. (Kids are a piece of cake compared to adults, I tell you). My son will be two in just eleven days, and he will switch out of daycare and into Montessori school. And then, on top of that, we will be moving. After renovating a house, and selling another one. Yikes.

Those who are friends of mine on facebook know that we got the house that I alluded to in a previous blog. There was so much drama involved that I can't even begin to describe it here. The house is a very charming home on a great street in our neighborhood--and it was a foreclosure. It is much bigger than our current house. It also needs a gargantuan amount of work. In some ways, we got the deal of the century. We had to go to two lenders to do it (apparently the conventional, vanilla loan is not the norm these days, though that's what we got in the end) and I learned a lot about how little banks care about the process of selling homes they have foreclosed on. Their attorney wouldn't even talk to our attorney. The real estate company wouldn't do anything. It was completely exhausting, especially since we have yet to put our house on the market. We will try to do that in the next week, and we will need to be aggressive about selling it at the right price, so we're not sitting with two mortgages for very long. That means that somehow we have to de-clutter and organize a house with two messy little kids living there. Like I said, yikes.

In the past, I never would have done this--never. I remember panicking when I was selling my condo and the first offer on it fell through, but our offer for our current house was in process. In the end we had one month of overlap where we paid two mortgages. The monthly mortgage cost for the condo was ridiculously low, but it still killed me to double-pay like that. Of course, we had just financed our wedding as well (those who know me, or were there, know that we didn't have a typical wedding, so we saved a lot of money. I actually really hate the wedding industry). I worked at a nonprofit organization while Gabe was self-employed, so it was tough.

This time, I only started panicking a few days ago, as we've started to plan the needed repairs for the new house. I have had so much other fear about bigger things, that this financial fear, while very tangible, is less immobilizing than it would have been if I hadn't stared my own death in the face. I mean, I really understand now how you can't take it with you. Gabe and I talked about why we were able to buy this house in the first place, and in some ways it was just plain luck, as we saw the house right away, our bid was accepted over all the others, etc. In other ways it is because, as he said, we have spent most of our lives "turtling." We are both the type of people who expect the worst, who hate taking risks because we can imagine all the really bad things that could happen if luck doesn't go our way. Back when I did community development work and I focused on financial education, I used to say that poor people save for a rainy day if they can and rich people save for a sunny day if they feel like it. Poor folks never expect the sun to shine. Rich people never expect the flood. And, moreover, that way of looking at the world never really leaves you, even if your circumstances change.

When people would tell me to be positive about cancer, to not think about the effects of chemo, I would think, bullshit. Cancer is a very bad thing. Chemo is poison. I wanted to prepare myself for what might happen, because I have other people I am responsible for, not just myself. If I couldn't walk, or think clearly, how would I take care of my kids? And yes, many things that could have happened with chemo did not, but a hell of a lot of bad things did happen. And then, almost all the bad just disappeared, despite my less than positive attitude. Even so, I still look over my shoulder, waiting for menopause to return. When my scalp tingles I wait for my hair to fall out. My back still hurts, and it hurts much more after spinning, so I'm sure that's what it is, but I wonder.

So all I have been able to do is wait it out. And we did, we just waited. But when I think about it, I didn't really just wait. I know people who have said that while going through cancer treatment, they put their lives on hold. What's the point of making plans? What if I die? What if I can't work?

That's the part where the glass-half empty attitude saved me. I guess I just figured, I could lose my job anyway, unrelated to cancer. Why not start a new one? Having cancer does not preclude me getting hit by a bus or becoming somehow impaired, so why not start five new workout routines in the middle of chemo? Our cars could stop working when we really need them (this has happened--stupid, dead Jetta). Kids could still get sick when I'm not well enough to care for them. So why not make plans? Shit will happen. You might as well try to do what you want, and if it blows up in your face, there was really no guarantee that life wouldn't blow up in your face anyway, when you weren't doing what you wanted to do.

After all, I got breast cancer. I don't drink, I exercise like a nut, I'm thin. I breast-fed both my kids. I did the right things, and I got cancer anyway. Why not buy a rambling house with a landing on the staircase big enough for furniture (sitting room!), a porch like I've always wanted, a huge play area for the kids? Maybe the universe will cooperate and we will sell our house quickly. Believe me, neither Gabe nor I expect that to happen. We are fully prepared to become landlords, though I unfortunately know what that entails from firsthand experience from my building manager days, and he doesn't. But we expect some drama. If that's what you expect, life will never disappoint.

We've been having some issues with contractors, which shouldn't surprise anyone. Yesterday I was talking to the guy who was replacing the gutter and he told me about a defunct squirrels' nest that he found. In fact, he said, look. And he showed me a dead squirrel carcass. He then proceeded to throw it onto my new lawn. I thought, huh. That's life right there. Beautiful house, great yard. Rotten gutter and a dead squirrel. As long as you know that these types of things go together, you're all right.

Years ago when Gabe and I were driving from New Hampshire to Maine, we stopped at a tiny dive bar called Nick and Lenora's. (Yes, that's partly where Lenny's name comes from--that, and Stevie Ray Vaughan's guitar). We played pool with the locals and ate some great cheap bar food. It was insanely hot. We made a bunch of buddies there, including an out of work carpenter who told us the following gem: "Big wheels roll through shit and dogs still piss on em."

I'm just saying.

Chicago-based blog readers, get ready. In a few months, we will have a Katydid 36 party. And this time, we will have enough space to host it at our house. Just leave your dead animals and dogshit at home, bring yourselves and remember that a party at Katy and Gabe's house is always going to be an easygoing, unpretentious affair. It's even possible that we will be having these parties for years. At least a few, however long I have. The house is so damn big that Gabe had better keep having parties even if I kick the bucket. In the meantime, we're no longer turtles, but little crazy hares, running in a million different directions. What was that cancer stuff, did that really happen? That was some big shit, I guess, and we just had to roll through it.

Sunday, May 8, 2011

Day 368: Mother's Day and Annual Breast Cancer Walk

I felt that I should write something today, as this was an emotional and, I suppose, a meaningful day. Obviously, it is Mother's Day. Less obviously, it was also the day of the Beverly Breast Cancer Walk in my neighborhood. I was captain of a team this year, and though I didn't do much to drum up members or solicit donations, we had a very respectable team of 16 people. After the rainiest April in 50 years and one of the coldest springs in memory, the day dawned beautifully, and we had a sunny temperate walk of three miles through the bucolic streets of Beverly with 10,000 of our neighbors. Afterwards we had a brunch catered in our backyard and the kids all ran themselves ragged while the dads (mostly) watched them, leaving the moms to relax.

The strange thing about this year's walk for me was that the strangest part was trying to stick with everyone. It was hard not to lose someone, or everyone, in the crowd. It was strange in its normalcy. I didn't feel particularly emotional, though I expected to, and Gabe was very choked up the entire time we were walking. I stopped at a "survivor's table" midway through and picked up my pink carnation and an inspirational message on a postcard that was so schmaltzy that I threw it away at home (I know, I'm terrible). At that moment I got a little teary eyed, realizing that I never would have expected to stop at one of those tables, to be the subject (and the object) of such an event. Other than that, it seemed like a normal walk, albeit slow due to the kids. Thinking about last year, the only other time we ever did this walk, didn't seem real.

I walked through the streets like a zombie last year. I mean that literally. I felt like the walking dead, a person half alive, as if every footstep brought me that much closer to dust. I didn't want to talk to anyone, and I cried at various moments all the time, especially when we got comments about our hair (your hair is so beautiful! your kids are redheads too, you're so lucky! your daughter is beautiful--look at that hair!) and I had to stop myself from losing it. Five days. The walk took place five days after my diagnosis.

I remember wondering if the next year, my family and friends would have signs with my name, birth date, and death date. I wondered if in a few years there would be teams honoring my memory. I became angry at all of the signs saying things about saving the tatas, upholding second base, welcoming all the boobs to the event.

What the hell does my fear of not being able to see my kids grow up, my plans for my funeral, have to do with my breasts?

Breast cancer is really not about breasts at all. I know that we need it to be, because somehow by sexualizing the issue we make it more approachable. Similarly, if we focus on the fight, or the hope, we can ignore the suffering and pain. Now, I'm not saying that I have a problem with these walks. I think they're great, and
I know that all of these messages are in support of women with breast cancer. It's impressive to see the number of people who come out for this cause, and everyone is extremely friendly and cooperative; it's a wonderful neighborhood event that has a very tangible benefit for all too many people who live in the area. But that's the part that gave me pause this year.

Look at how many people are here, look at how many people have these damn pink carnations, and those are only the women who saw the table, decided to stop, and then didn't care if anyone knew that they were survivors.

There's too damn many women with breast cancer, and we should take the breasts and the cancer out of that statement and say that there are too many women suffering and dying too young.

What a horrible disease. What a horrible thing to haunt me every mother's day that I'm here, as early May will always bring that reminder, no matter how many years I have on this earth. And I am still in that place where I wonder about that. Every time my back hurts I wonder if I will be alive much longer, if I will see 40.

That fear sits with me, but it leaves fairly quickly too. I move on to the next thought. Most of life has nothing to do with cancer, but has to do with life. We visit with friends who are in from California. I juggle a bunch of things at work. We wonder what to do with our Jetta, which has died in our driveway and shows no signs of potential revival. I get nervous thinking about my first water practice tomorrow for rowing, and I try to think of ways to get out of it.

And on mother's day, I open my presents (a gift certificate for a massage and padded bike shorts for spinning from Gabe, a card with Lenny's picture and handprints, a necklace and earrings from my mom, a signed Naomi Shihab Nye book from my brother) and eat too many doughnuts before the walk and then wonder how I gained three pounds this week. I make Lenny clean her room, I tell Augie to calm down. I take myself shopping, wonder if we will be moving to a new house or not, pick out an outfit for work tomorrow, make love to my husband, take another walk because I don't know how to nap, absentmindedly read the paper. I also reminisce about the mother of a dear friend who passed away very suddenly just a few days ago, and I am glad I went out to visit the family and that I will be able to attend the funeral tomorrow. I think about how mother's day must feel so tragic for my friend and her father and the whole thing makes me very sad.

A year ago on Mother's day, I would have been completely unable to think about any of these things, to do anything but feel my own painful breaths escaping quick and shallow and wonder how many more I had left. I didn't know then if in a few weeks I would have breasts, or ovaries, I couldn't imagine how it would be to be bald or to poison myself with chemo. I didn't know what stage I was or if I was likely to live. I know so many things now that I didn't know then, but also so few. One thing I know now is that I have been able to be a mother for another year to two children who changed so much, and yet didn't change at all, in that time. (Lest we forget how quickly we seem to change, I've included pictures here from a year ago juxtaposed with pictures from today.) I might be a trained sociologist but I know from watching it happen that personality is with you at birth. Children are themselves from the start, and life and all that comes with it just adds on to what was already there.

I hope that living with a mother with cancer did not add too much weight onto my kids' shoulders. My mom babysat last night while Gabe and I went out (to get expensive drinks at the bar at the Drake and see Working, the musical made out of Studs Terkel's book) for the first time in what seems like forever. She said that Lenny asked out of the blue, is Grandma Marthagene dead? (She was my mom's mom). Yes, my mom told her. Lenny asked, is daddy's grandma dead? Yes, she is. Lenny paused and said, I am really glad my mom doesn't have cancer anymore. The doctors said she doesn't have it, that it's gone. Yes, that's right, my mom told her, she doesn't have it anymore.

We tried so hard over the last year to not let Lenny equate cancer with death, and it didn't work at all. What can I do? I guess I can just try to be mom for as long as I'm able. I can chastise her for not cleaning her room, yell at her to get her shoes on, make dinner, braid her hair, make her do some math based on the cupcakes she helped me bake, read her a story, kiss her goodnight. I can do similar things for her brother. Maybe there is a snippit in there that they will remember, something that will calm them later in life when the world makes them weary. If not though, I will remember, and this is the selfish part of parental love, where you perhaps get more out of it than they do.

It's hard for anyone not to equate cancer with death, so why should my daughter be any different? The doctor who ordered the ultrasound for my breast over a year ago told me two things that I remember very well. He told me that everyone he had spoken to with breast cancer wished that it could be a year from now already, and that they could see what it would be like. He also told me that I saved my own life. I know the first statement is true. If the second one is also true, I want to say on the record that while I wish time would move slower so that this life didn't seem so astonishingly temporary, I'm glad that it moves, so that on mother's day 2011 I could walk with thousands of other people away from that crushing fear and sadness that breast cancer brought to me in 2010. Whether in a crowd or on my solitary strolls at dawn, I like to think that by being here still I am walking for some other mothers, daughters, sisters and friends who can no longer walk for themselves. That's what we should do--walk for them, not for their cancer or their breasts. Those are not things worth remembering, but a person is, a life is worth it.

Happy mother's day.

Wednesday, May 4, 2011

Day 364: One Year Later

I know that from the title, you might think that I don't understand how many days there are in a year. I do, all too well. I started this blog on "Day one," or one day after I learned that I had breast cancer, on May 5, 2010. On May 4, 2010, I received the news that changed my life.

This idea of a cancerversary is interesting, as there are so many dates that one might use to mark a year. I could think about yesterday being one year after my biopsy, after I received the piece of paper telling me that the results of the mammogram indicated a possibility of breast cancer. I could think about June 4, one year after surgery, when the cancer was removed (that is the date that the doctors use, I believe, to say you have survived for one year). I could mark the end of chemo, October 18, or the end of radiation, December 10.

I could, but every cancer survivor I've ever met counts from the day they received the diagnosis. And what a day that was.

I went to work, in pain from the biopsy, and concentrated on the logistical issues that came up in regards to my major conference that was to take place a few weeks later. I got a call from my ob/gyn who had given me the referral for the ultrasound a week earlier (99% sure it's nothing, go get it checked out and call me back with the good news, he had said) and if I hadn't been in such denial I could have reached out and touched the pain in his voice. Have you heard from the radiologist? No, nothing yet. Oh ok, well let me know when you talk to her.

I learned later that he already knew, that she had called him to say that she was very concerned with what she saw and that she thought I had cancer. I think he was crying when he called me, but I just couldn't let myself hear that.

I went home and hung out in the yard with Gabe and the kids and our next door neighbors. I watched my cellphone, waiting for it to ring, and I brought the cordless phone from the house out too. A call came in on the landline and Gabe answered it. The doctor asked to talk to me. I took the call and again, if I hadn't been wishing with all my heart against it, I would have known from her voice the second she said hello.

Before I made it to the house she said "I have to tell you that we did find abnormal cells in your biopsy." Pause. OK, I said. "Specifically, we found cancer cells." I felt like I would vomit but I just stood there numbly and said OK. "Are you in a place where you can talk and where your husband can get on the phone with you? It would be helpful if he could take notes while we talk." I was silently crying. I walked back into the yard, looked at Gabe and nodded. I saw my neighbor put her hand to her face and gasp. I guess Gabe must have handed Augie to someone, but honestly I wasn't paying any attention.

That phone call was one of the most surreal and nightmarish experiences of my entire life. Gabe took notes on a netflix slip. I learned that I was triple negative, though that meant nothing to me at the time. She told me I would need to do chemo, that it was early stage, perhaps even stage one but most likely stage two, and that I was a good candidate for a lumpectomy and radiation. She told me I had either two or three tumors. I was referred to a few surgeons. She knew I was still nursing so she said that I couldn't have an MRI but that I would need other tests, and that due to my age and triple negative status I should get checked for the BRCA gene. She told me I would likely need to wean as soon as possible. I asked about my chances for survival and she told me they were good, that many women in my situation did very well. All I could hear in that was what was behind it, the fact that some women did not do well at all. I had to acknowledge that if I was asking about my chances to live or die, that that was exactly what I was facing: a life or death situation. It didn't seem possible. This doctor had a very naturally cracking voice, but I could hear the emotion there too, even though I couldn't, if you understand what I'm saying. I couldn't let myself hear that.

I remember looking outside and thinking how beautiful the day had turned out to be, how sunny and warm. I felt so healthy, so fit, so alive. I know that I responded to the information I was given, and I know Gabe tried to sound very businesslike as he asked questions and took notes. I know he thought I was going to die and that he would be left to raise the kids himself. I know that, even if he didn't say it. I don't remember if I cried during the call itself, but I remember how hard it was to breathe. The rest of the day was a blur. I think I took a walk, but other than that, I'm not sure what happened. Where were our kids? Did they eat dinner with us? What did the neighbors tell them? I have no idea. I'm not ashamed to say that for a few hours I had to pretend that I didn't have kids at all, that I wasn't a mother, because thinking about them was too painful for me to bear.

I didn't want to talk to anyone after I hung up the phone. I made Gabe call my mom. He agreed, though I know he had no idea what to say. He went upstairs so I wouldn't hear the conversation, but he called from Augie's room and didn't realize the monitor was on. I heard the whole thing, him crying, saying, Kate has cancer. Of course, I couldn't hear what my mom was saying, though I could imagine. Later that night I called my ex-boyfriend. I still don't know why I could do that but I couldn't pick up the phone when my brother called. It doesn't matter, I guess.

I decided that night to write this blog, when I realized how impossible it would be for me to tell anyone in person, or on the phone, about my cancer. I just couldn't handle it. I had no idea who, if anyone, would want to read it. I didn't care. I wanted to update my family and any friends who might be interested, and I wanted to give those closest to me an out. What does that mean? Well, when people would ask Gabe tough questions, ask him about things he was too emotional to discuss, he could just say "read the blog." I also wanted something else, deep down. In those initial days of terror, I wanted some way to document something of myself, to leave something for my kids to remember me by, as they were too young to remember me much, if at all, if I didn't make it.

The blog has been more than that for me. It's been cathartic, and has helped me work through more emotions than I could have handled in any other way. It's enabled me to write about the injustice of cancer treatment, to document all the unfair and torturous and bizarre things that happened. The blog has been my photo album of cancer, allowing me to see what I used to look like (is that woman with long red hair really me? She must be someone else), what chemo did to me, what it looks like to be healthy after cancer treatment. It actively hurts me to look at some of the pictures we took of me, especially in the late fall when my eyebrows were gone, I was still bald but had the horrible peach fuzz coming in, and my body was burned from radiation.

What the hell kind of shit was that?

I've tried to read this from start to finish, and I've never made it all the way through. First of all, it's very long, probably 350 pages or so at this point. Second, something always stops me. I get to the middle of my A/C treatment and I just can't get past it. I am shocked that I worked while doing chemo when I look back and read the documentation of everything that was happening to me at the time.

You might ask what was the worst part, and you might ask what I have learned. The absolute worst part of this year has been the fear. The fear that I started with, the fear that remained. It has dissipated but not disappeared. It was with me last night when I had a strange, tingling pain in the back of my head. It's with me all the time, with every decision I make about what to do with my life. I don't focus on it, but it's there, in the background, reminding me.

I haven't written about this at all, because I was afraid of jinxing it, but we are in the process of trying to buy a new house. The whole deal might fall through for a variety of reasons. It has been very stressful, though once I received the news of my clear mammogram last week, I felt such a huge weight lifted from my shoulders that in some sense I stopped caring about the house or about anything else. The enormity of that relief was fleeting, however, and life continued, and some of the stress returned. But here's the point I want to make:

I think we want to buy this house because of cancer.

For me, it's because it gives me something to look forward to in part--it's a project, and it could even signal a fresh, post-cancer start. But more than that, I have wanted to do it because I feel that given our occupations and the fact that we are never going to make it big, buying this house might be the best investment we could make that could put Gabe and the kids in a better situation if I were to die. I think Gabe wants the house because you can see the sunset and sunrise from the top floor, which is very rare in Chicago, and he sentimentally wants to watch those with me for as long as I'm alive.

We will be fine in our wonderful cozy current house if this doesn't happen, but the point is, I don't think those are the regular reasons that most couples have for buying a house.

We are fresh out of regular reasons over here. I can honestly say that 2010 was the worst year of my life. It's a terrible thing to say, given that I had a healthy baby who was learning 75% of all the things he would ever know in his life (how to walk, how to talk, how to feed himself, give a hug, and eventually use an ipod) and that I had a little girl who needed me to be happy as she lived out her fourth fragile year. But it's the truth.

I know I should celebrate and say, I made it one year! I know there are a lot of people with cancer who can't say that. I should look at this self, this body, and wonder at how completely I have come back. What makes this anniversary so poignant is that I can remember what it was like a year and two weeks ago, when I was just living my life and death was nowhere lurking. I can remember how it felt to have my youth taken from me, my idea of myself as a healthy young mother. I lost so many things in one year, as did my family. I have detailed all of those things here--from the physical, such as my hair, or Augie's ability to nurse, or the friendships that didn't survive cancer, to all of the intangible emotional losses. I won't even try to explain how it feels to come out on the other side, because while it is beyond wonderful, it is not worth knowing if you don't have to know.

And so I have learned something. A year is not enough. It goes by so quickly, no matter how much you suffer, how much changes, how much things get better. Time is so fleeting, and that's both a blessing and a curse. If you have one year, you want ten, especially if you have small children and you realize how much they change in such a short period of time. They say that as parents, we lament how the days are long and the years are short. That has nothing to do with parenthood--that's just the truth of life. Thirty five is way too young to have cancer, to be so close to death's door. And yet it's hard for me to believe that I'm thirty five, when I was five just yesterday, when everything that has ever happened to me, no matter how big or small, might as well have just happened.

One year ago, I found out that I had breast cancer. I should say that I will never look back, because that is what I am supposed to say. But of course I will look back. That is the only way any of us can look, back into our lives, to remember. The rest, the looking ahead, we are just imagining. It is worth imagining and dreaming, it is worth it to look forward to what hasn't happened yet. It is also worth it to remember what was real, no matter what it was. I would have liked to trade this year for just about any other, but I wasn't given that option, as no one ever is. So I will look back on this year and shake my head, but I will look with some fondness as well, because it's my life. For better or worse, before cancer, during and after, it's my life.