Day 740: Walking for Breast Cancer...Every Day

Yesterday, our family participated in our third annual Beverly Breast Cancer walk. Though we had lived in the neighborhood for years before we walked the first time--five days after I was diagnosed with breast cancer--we had never participated. I didn't know I had cancer when I signed up the first time. I do remember saying something to Gabe like "well, I guess it's good we're doing this. You know, just in case," after I felt the lump in late April. I didn't realize then what was coming, of course. My mom joined the four of us (Augie wasn't even a year old so he was in a stroller, but I honestly don't remember whether 4 year old Lenny walked or went in a wagon) and we did the three mile walk in our neighborhood, literally in a daze. The day before, I had nursed my infant son for the last time. I made Gabe take pictures so we would have that to remember, but I was so sad about what we were losing, and why we were losing it, that I hardly even remember doing it. So, during the walk on Mother's day in 2010, I basically stumbled all three miles, trying not to cry. The whole thing was awful. All of these people were laughing and waving pink flags and talking about saving the tatas and all I could think was that I was going to die. And that someday my kids would join that walk carrying a sign in my memory. I just wanted to disappear.

Last year, things were obviously a bit different. I looked very different, for one. I had hair, but not much. I was done with cancer treatment, not just on the cusp of starting it all. We had a team of 15 or so. Gabe was more emotional than I was--he was edgy for days beforehand and got choked up at several points during the walk, which didn't happen to me. I felt kind of...verklempt, I guess you could say, when I picked up my pink carnation from the survivor's tent. It started wilting before we even got home. People need to think these things through.

This year, things were different still. I was kind of looking forward to the walk, since the route went straight past our house and we planned to have a little party afterwards. We were supposed to have 23 people or so on our team, but there were some injuries and other issues and we ended up with 15 again, and a dog. The walk didn't seem so insufferably slow, and it was a beautiful cool but sunny early morning (south side Catholics, man, make us get up for this kind of stuff super early so everyone can make it to church), and it was kind of...fun. I wasn't really expecting that.

I bought a sign for our lawn and had my name inscribed on it. I didn't tie pink ribbons around any trees or write "survivor lives here" in pink sidewalk chalk. Shit, Gabe even forgot to mow the street-side of our front lawn. A friend who was on my team made these great signs that said "katydid cancer. now she's done" and people took turns carrying them around. I got some interesting looks when people realized the woman on the sign was me. I now have one of these signs in my lawn (still unmowed). I didn't get emotional at all, and amazingly, neither did Gabe. Afterwards, I did something I rarely do and actually put two of my friends to work in my kitchen cutting up fruit while I heated up the quiches I had made, fried some ham, made coffee, and got out the bean-corn-avocado salad and the chocolate chip banana bread, not even feeling embarrassed that all of that homemade goodness was sitting next to three store-bought coffee cakes and a cooler full of beer and Mike's hard lemonade...at 10 in the morning.

Then chaos ensued, and the kids played outside for literally five hours. I don't even know how they were still standing at the end of the day. The moms at the party didn't move from our mimosas or coffee or beer. Dads were put in charge, which meant that of all the things the kids could do, they settled on riding plasma cars down the steep hill of our cement driveway until they almost killed themselves on the pickup truck parked at the bottom, and the dads stood there nodding and talking about whatever dads talk about. No one got injured, though Augie and a few other kids did go flying off to the side into the bushes. I just kind of shrugged, thinking, huh, he'll live, but I also got livid when I realized Gabe was calmly CLEANING CHAIRS when Augie was off wrecking havoc somewhere and I was supposed to be off-duty. Then all the dads went to the park with the kids and we moms just sat there in the sunshine. During the 30 minutes the kids spent indoors, they destroyed the house, but I didn't even care. Gabe cleaned up most of it, I went for another, faster, walk, and then Lenny helped me plant impatiens. After that, I took a nap and woke up at 7 pm in time to read the newspaper while Gabe gave the kids showers, before we both put them to bed.

Ah, Mother's Day.

Sounds idyllic, right? No matter that Gabe and I got in a huge fight over nothing the night before, though I'm sure no one at our house could tell that. We were over it, I guess, though I'm still pissed that it happened, because the last few months have been so ridiculously emotional with everything that has happened that I think I should be spared all elements of marital strife. The mammogram, the show, the two year cancerversary--I was like a twig about to snap. Then, I spent my third mothers day since I found out I had cancer walking around my neighborhood to support something I would rather not think about again. Some people get breakfast in bed. I get a huge dose of reality, room-service style, served up to me every mother's day.

Now, don't get me wrong--this walk is meaningful for me because it supports the small local hospital where I did radiation every day for 7 weeks. I would have had a hell of a time if I'd had to commute to a large research hospital to get decent care. It takes longer to undress than to do radiation itself, so the shortest commute is almost a necessity. The radiation oncologist at this place is absolutely excellent, and he has a decent bedside manner to boot. They had that nice spa service while I was doing treatment there, and I got free massages and pedicures for months, which was a great bonus and a nice way to have some "positive touch" while my body was being burned and fatigued. And this hospital could use the money, where the big ones kind of have it coming out of their ears. And it's nice to see everyone in the neighborhood where you live supporting your struggle, even if it's just on the surface. The local Starbucks had a tribute to women with breast cancer and a few folks put my name on ribbons that were displayed in the shop, and I don't even know who did that. Things like that are actually meaningful, much more so than all the damn pink in our culture. The Starbucks thing is also funny, because all of my "names" were there: Katy Jacob, KatyDid Cancer, and even "Katy Sterritt." People will say "but your name isn't Katy Sterritt." Look, I know who they're talking about. Gabe isn't Mr. Jacob, after all, and he always answers to that without an issue. One of our babysitters said to him, you must be Mr. Jacob, and he said, well, I suppose you could call me that. And then we left.

Choose your battles, if you have the opportunity to choose them.

Sometimes, you don't. And you fight a battle that isn't a battle and you fight something that isn't a fight but that's what people call it. It's a disease, and it kills people, 40,000 women in this country every year, and it forever changes the lives of those who are diagnosed with it and are lucky enough to survive. It makes you suffer and it makes you afraid. You walk three miles, something you do every day, and your breast hurts because it always hurts. Your arm pulls because it always does. You are just trying to walk and eat pastry and yell at your husband and put your hand over your eyes when your kid does something crazy and live like everyone else. It doesn't feel like courage, and you don't feel like a badass. The best case scenario is that you feel kind of...normal.

Just kind of, not entirely normal, because people are telling you they are happy for you, and it's your face up on that sign, and your 6 year old daughter knows all about the hospital the walk is benefiting and could tell you all exactly--EXACTLY--what radiation is. You look like everyone else on that walk, you are all wearing the same shirts and your hair is long enough to let you pass, and it's possible that no one would "know." But what is the point of that? So you walk to the survivor tent again, relieved that someone had the sense to opt for ribbons instead of flowers. You are shocked and saddened to see so many pink ribbons, and to realize how many women are walking around who are just like you. A man asks "so who is the survivor here?" and you raise your hand and he tries his best not to suck in his breath and he tries unsuccessfully to hide his surprise because, you know, you're young. And those adorable little children belong to you. And he knows that it's bullshit, because he must love someone who had breast cancer or he wouldn't be working the tent, and he asks you how long. "Two years," you say, somewhat surprised to hear those words come out of your mouth and realize they are the truth. He gives you a high five. And then he looks at you a little longer than he should, and he says...

"You look great."

Because that is just what people say. And something has shifted in you, because it doesn't even bother you. You smile and say thank you and walk home, representing for breast cancer, because that is what you do every day that you can still walk around.

Day 443: Couldn't Stand the Weather

As I was contemplating whether or not to write a blog today, I thought I really had nothing to say. There's not much going on on the cancer front, thankfully, and yet the front has not disappeared. It's become a part of the routine, something I don't even think is worth mentioning much of the time. So, ultimately, I decided to write about that. It's not such a normal thing for cancer to be normal, I suppose.

I had my three month checkup at the oncologist's office this week. I don't bother to ask Gabe to go with me to these appointments, as no mammogram is involved. After taking a cab there from the train station, I waited around for an hour, pissed off that they have not a single magazine to read that isn't related to cancer (seriously!!) in the huge waiting room. My restaurant-style pager looked at me silently after I finished reading the paper. I went to the bathroom, did work email on my iphone, felt doomed to spend the rest of the morning in the damn place. When the nurse finally came to get me, the most interesting thing I learned is that I've gained two pounds since the last visit (oops) and all my vital signs are totally normal. Then the doc came in, which surprised me. He usually sends his P.A. first. He shook my hand, attempted a smile, asked me how I was taking the heat (it's been 100 degrees and humid in Chicago--here's me sweaty and fussy but trying to play it off in a bright red dress anyway). I almost felt for him--the small talk doesn't seem to flow easily.

Now, most breast cancer survivors get a bunch of tests during these visits, or so I've heard. Blood tests to check for...what, I'm not sure. Me, I get nothing. I asked about this--do I need any blood tests? No. (He's the king of monosyllabic answers). Um, ok. I never had a follow-up MUGA for my heart either. Do I need one? No. Well then, ok.

He took my arms and felt them, held my wrists, looking for changes in size that could signal lymphedema. Then he took my arms out of the gown himself, which he always does, and started my breast exam. This used to creep me out, even anger me. Now that I'm past some of my vitriolic anger that I felt during chemo, I can actually see it as his way of trying to be gentle, or caring, or something. It was interesting to have a little bit of a different perspective.

While he was examining me, I told him something I had only told Gabe until that point. For the week prior, I had been kind of terrified of a hard spot in my left breast--the previously cancerous one.

I didn't call my surgeon because I knew I was going to the oncologist soon and I've been extremely busy at work due to my new job. I showed Gabe, who thought it felt like scar tissue. Now, I have a lot of that, but this was one spot just to the right of the scar that felt, well, scary. I had told Gabe that I couldn't imagine going back to that place, doing all of that again, losing my breast this time, my hair again, trying to find a chemo I could take when I exhausted my lifetime intake of adriamycin, and on and on. But I didn't feel like it was worth mentioning to anyone else.

It's the first time since that mastitis in February that I've been worried about something in my breast, even though I still have chronic pain all the time. I have pain when I lie on my left side, pain when Augie leans his head on my chest, pain if I try to lift the ten pound weight or do a single pushup. If I stop to think about it, it seems strange to still have that level of pain more than a year later, but I've just kind of folded it into my life.

A strange lump is not so easy to ignore or to fold in though. The doc said it didn't feel concerning to him, my mammogram not quite three months ago was normal, extreme scar tissue and chronic pain are also normal. He told me, as he always has, that I look good. I should enjoy the summer. The whole visit lasted less than ten minutes.

When I left I went to the "other side," the area of the 4th floor where they do chemo. I looked for my chemo nurse. A bunch of the other nurses and aides recognized me, which I found surprising. It's been nine months since I left that place for good. I waited a bit for the nurse, then decided to leave and saw her in one of the infusion rooms as I was walking out. I wasn't going to interrupt, but she saw me and yelled, hey you! look at you! She told the bald woman in the room that I was one of her old patients. Look at her hair! she said. Third haircut, I told her (I gave in and got another one today--mostly the back and sides, which I photographed in the oppressive heat--it's the pic with the striped shirt--and I can't decide if it's too short or not). The woman getting chemo got really excited and started talking about her peach fuzz that was coming in. The nurse left the room and we talked for a while, about my new house, how much she loved my hair, how it was less busy on a Tuesday than when I used to go in on Wednesday or Monday, how it all seemed like a bad dream.

It's not a bad dream though, it's a bad part of life that hasn't ended entirely, as evidenced by my pain, fear, and complete disinterest in visiting doctors if I can avoid it. After talking to the nurse, I left and called Gabe to give him the news. We talked as I was waiting for Zara to open so I could go on a brief shopping spree, the reward that I often give myself after doing my cancer business. Maybe Northwestern is smart to sit itself in the Mag mile, where sick people, cancer survivors, and women who have just learned they're not yet in labor can go for some retail therapy. Anyway, he wanted to know why I didn't demand more tests, wanted to know when I was going to get a MUGA. I gave him the reasons that I know the docs have: I don't have cancer symptoms, I had clean scans, MUGAs are lots of radiation, there is no reason to believe my blood counts would be abnormal.

The real reason is that I'm sick and tired of going to the doctor, going to the hospital. I have spent an inordinate amount of time in such places in my life, ever since I was a child. I want to avoid thinking about cancer, to the point where I had to admit to the doc that I don't even take a multivitamin anymore, no Vitamin D or anything. I asked him about my strange cycles and he said since I had my period, I wasn't in menopause (right--thanks) but it was impossible to tell if I would go into it soon. I don't need calcium supplements yet, I learned. Huh, once those hot flashes stopped and I got my sex drive back, I stopped caring about any other side effects of menopause. I feel normal, would like to be normal, thank you. Normal people take vitamins. I take one and it reminds me that I used to be in menopause, that Vitamin D is thought to have some small positive effect on breast cancer, and wow, I had breast cancer, didn't I?

The bottom line is, I want to go out for a cheeseburger, buy a new skirt, sit here on my couch while the rest of the family sleeps and watch Iron Man on t.v. I want to go swimming, bitch about the heat, read a pointless book. I want to dream of winter as I look at this photo of Lenny with her picture of "Santa McMillin" (her name for her Santa doll--don't ask me why, I have no idea). God help me if I need to put any more needles in my arm. I'm fine with never having another blood test, not having to ever remind another nurse not to stick me or take blood pressure on the left arm. I want to be angry at myself for weighing five pounds more than I'd like to because I'm a woman and women berate themselves about these things. I don't want to worry about it due to my triple-negative status and the fact that being skinny is my most notable defense.

It's hot, it's hard to exercise much in the humidity, and I've actually been meeting other adults for lunch, actually been drinking a beer with my husband after work sometimes. Thus the few pounds. I've been normal, but it makes me think that maybe I shouldn't be, not yet. I'm making myself ignore my breast for a while, I'm trying to just enjoy the summer, hellish as this weather is. It's not that hard, as I watch the kids running naked through the yard, spraying each other with the hose, having their first slurpees, helping me gather sticks. It's a strange summer, but it's a summer all the same, while last July marked the third month in what was just some poor excuse for a season in all of our lives.

Well I guess I had something to say after all. Now back to watching an evil Jeff Bridges. Can I help it that while I laugh at him yelling "Tony Stark built this in a cave!" I secretly wonder who bic'd his head? Nope, can't help it. Next scene. Moving on.

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

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?