Day 452: Reconnecting

Once again life has just kind of gotten in the way of blogging. We are getting ready to move over here, having decided that whether or not the house is actually ready for us (we still have one huge remodeling project that may or may not get done before we move, and a million smaller things to do), it's just too hard living in two houses. We still haven't sold this house, and we might need to resign ourselves to renting at some point. We're still hopeful though. We love our house, and we've put a lot of work and love into it, so someone else should see that too, right?

I don't really know how to feel about moving. In a basic sense, I absolutely hate moving. I hate packing. I hate how you realize how much shit you have. I worry about getting used to a new place. Specifically, I hope it's not too hard on the kids, even though we're only moving a few blocks away. It will still be different--different rooms, no friends right next door, a different yard. On the other hand, I love decorating a new place, figuring out where everything will go, seeing what was once a fairly desolate looking space turn into our house, the place we plan to live for a long time, especially if folks like me actually live for a long time.

We've been so busy it's been hard to connect with people. I'm working full time now, no Fridays off, and that's been a bigger adjustment than I expected. I'm still figuring out my job and that is somewhat stressful. We're always running between one house and the other. We try to take the kids to the pool, take them out for ice cream, let them catch lightning bugs. But getting them together with friends after school is hard to coordinate, and hell if we ever figure out when to see our own friends, or if we still have friends. I know we do, but lots of time goes by when we just have this little family unit and that's the world for us outside of school and work. We get so exhausted that after our next Home Depot run or after Gabe moves some ridiculously heavy toilet or vanity or marble counter top all by himself into our big rambling house, we collapse and watch some stupid shit on tv and fall asleep on the couch. I can't say I call people often, though I know back at New Year's I said I would. So it's nice when people find us, reach out to us, and it has nothing to do with cancer or asking how I'm doing or commenting on my haircut. It's heartwarming when people wonder about you, think about you when they could think of so many other things.

Several weeks ago, Gabe received an interesting email, asking him if he was the same Gabe who lived in a co-op in Madison, WI when he was a baby, in 1975 or 1976. The email said, if this is not you, please ignore it. If it is, I want you to know that you were the most beautiful baby I've ever seen, and I wondered what happened to you, and we are having a 40 year reunion for everyone who ever lived at the co-op.

Now, Gabe is hard to find online. He's not very "google-able" and he likes it that way. I on the other hand am way out there in cyberspace, ruining his game by putting pictures of him on here and everything. But somehow this woman found his work email address. I said whoah. We have got to go to this thing. The story of Gabe living in a commune (that's what it is to me) in Wisconsin as a baby, of his mom going to a different commune in the country to give birth to him since they had a midwife there, has always been entertaining to me. Then this woman finds him out of nowhere, must have been thinking about him on and off for the past 35 years, wondering what became of him, if he was still alive, and all of that. That's just too good.

So we went. We stayed in a hotel right near the Capitol, took the kids to the pool, got some sausage and brats and drank some Wisconsin beer. Then we took a walk over to this beautiful rambling building right on the lake and people looked at us like, who are these squares walking around here? Why did they bring their loud little kids? Gabe walked up to a guy and started talking to him, and he said right away, wait, are you the son? Are you Gabe?

All these people who floated in and out of this place, which seemed trapped in time somewhere in the middle 70s, and Gabe picked out one of the two people who lived there at the same time as him. This guy then found Lucy, the woman who had looked for him, and we spent the rest of the evening talking to her. I asked her to pose with Gabe and the kids. She was just so genuinely happy to see him and see that he was all right, that he had grown up and had a family. It must have been strange to help care for this baby, see him start to crawl and learn the things babies learn, and then see him leave, and never know anything else about him all of a sudden.

It was fun, and interesting to hear the stories. And it was nice to be in a place where no one knew I had cancer, where I was seen as the wife of someone who a few people used to know, who was part of the image of a happy and healthy family. It made me think about the people in my life I have wondered about: my best friend in first grade who moved to the Philippines before second grade; the ex-Marine I met on an Amtrak train when I was 24 who worked on a ship in Seattle and much to my surprise spent weeks afterwards trying to convince me to let him visit me in Chicago; the student teacher we had for a while in sixth grade who wrote me letters about her vacation and her engagement the summer before I started junior high.

Years ago I reconnected with one of my best friends from eighth grade who moved to Budapest before high school. Ironically, I found her right after I had visited that city for the only time in my life. In the end, she met up with my brother, who was living there at the time. We kept in touch via email for a while and then lost touch again. When we found each other initially, she said she had always wondered about me. We wrote each other letters for a few years in high school, but even though we stopped doing that, we never stopped occasionally thinking about each other and imagining how the grown-up version of our childhood friend had turned out.

I wonder if any of these folks I've mentioned ever think about me, or if there are other people for whom I am that blurry memory, that question mark that intrigues, that google search that leads to a cautious email asking, is this really you? Unfortunately, I am still in a place where I kind of hope not, where it seems like it would be depressing to a person if she found out what's been going on. In my brighter moments, though, I think, maybe that's not the right way to see it. Maybe I've turned out pretty good, done pretty well, maybe I've gone through a lot of shit over these years and come out on the other side. Maybe there's even something of myself that she would recognize if she saw me, if she read this blog or met my children. Who knows? Stranger things have happened; I can be a witness to that. Stranger things indeed!

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 436: Fast Forward

When I was first diagnosed with breast cancer, the doctor who gave me the ultrasound order said that he knew that the only thing I wanted was to be able to fast forward one year, to see what life would be like "after cancer." He told me that in ten years, I would be the woman who received a phone call from a friend, saying she had breast cancer, and looking for advice. Well, I really hope the prediction about the friend isn't true, though I would like to be around in ten years to receive happier types of phone calls. The first sentiment is spot on, though, because I was desperate to know what it would be like when a year passed. But some anniversaries are wistful, some are fun, and some are just a little macabre.

A year ago today, I had my head shaved and my long, pretty, curly hair shipped to a place in Florida so that I could keep it--wear it, even.

That hair pretty much sat in a box once it arrived. So did my $800 worth of wigs. It seems like such a waste now, but the inability to fast forward our lives brings us those moments of terrified spending. I just couldn't imagine what it would be like to be bald, to live as a bald woman. I scoured the internet looking for pictures of bald women, searching for testimony to tell me how long it would take for my hair to grow back, and I found little that was of use. So here's my contribution to those women who are doing the same frenetic searches today. Here's what it looks like before, during, and after. Here's one example of post-chemo hair a year and three haircuts later. And I guess the message is, it could be better, and it could be worse. The message is that somewhere down the line, the hair became the least of the issues, it took a back seat to all of the other cancer-forced changes, though being told that doesn't help when you're at the beginning of it, waking up from dreams of your bald self in the middle of the night.

A year ago, I was eight days past the start of AC chemo. For the first five nights, I didn't sleep at all--no sleep, not even five minutes, for almost a week. I was this short of clinically insane, and there I was working, taking walks, trying to have conversations. I started out 117 pounds and got down to 110--my chemo nadir--and back to 113 by the time I shaved my head. I had to leave the house, or at least go upstairs, whenever my family ate dinner or else I would vomit. I lost the ability to sweat, the ability to cry. I walked out of chemo with 9 drugs in my body, including one that causes permanent heart damage in 3% of the people who take it, and my body tried its damndest to say, oh no you didn't. You aren't doing that shit to me again.

But I did. Three more times, and four more with a different poison. Then I burned myself for a while. I went through menopause, went through so many things.

And now it's now. I have a new job, a new house, a relatively presentable haircut, and I weigh 116 pounds. I get up at 5:15 every morning on purpose to go spinning or to take a long walk. If I had even thought about spinning a year ago, I would have collapsed from the mental imagery of trying to keep a chemo-ravaged body steady on a bike for 45 minutes. But it's not July 15, 2010 anymore. The calendar really did turn, though for a while there I didn't believe it would.

Shaving my head was so hard, so sad. I cried so completely, something I rarely do. But I came back to myself relatively fast; I just sobbed and sobbed and then...I stopped. And I only cried for my hair one more time, when Gabe had to bic it smooth once it started hurting, pulling on my scalp all the time, two weeks later. At that time I wasn't crying for the hair itself but for the absurdity of the situation, the backwardness of what we were doing. Isn't it the wife who is supposed to try to give the husband a haircut with the clippers, to save some money by avoiding the barber? After that bit of morbid bonding, Gabe told me I looked sexy. He thinks this bald picture of me taken on our anniversary weekend is sexy, in fact, though by that time my eyebrows and eyelashes had started to disappear. There are things you are supposed to say when you're married, I suppose, to keep the peace, and though most men don't have the bald-sexy line in the repertoire, Gabe used it a lot. Maybe I believed it, maybe I didn't, but hearing it was better than feeling unattractive and alien for half a year, so I can thank him for that.

I've been thinking about what I would have told myself if I could see into the future and see my hair and feel my body and live my life the way everything is now. I would probably be at a loss for words, though. I suppose the right thing to say would be, you will be just like your old self, though that is not a truthful thing to say. The truth is, you will feel like yourself the whole time, even in the middle of chemo, you will not ever feel like a different person than yourself. That is the frightening part of suffering, that it happens to us, and we are still us, and when it ends we don't need to roll back into ourselves because we never left. Suffering terrifies us because it doesn't always happen to other people, it happens to us, and we don't get to pretend to be someone else in the meantime.

At the same time, I look at these pictures and it's like looking at several different people. In the first one, I had already had two cancer surgeries, so it's not a pre-cancer shot, but I just look completely different to myself with all that hair. The second one, where I'm stripped to the bone, framed as some kind of basic version of myself that most women never see, with no hair, makeup, what have you, and that's another person. Then there's the tan, huge-eyed version of myself, with that postmodern iphone glance that is somewhere underneath the camera, somewhere south of the middle distance. Finally there's me, fresh from spinning, thinking about how it took a year for my sweat glands to reemerge, knowing that my muscles could not only hold my weight but accomplish something athletic to boot, holding my once-vibrant hair, which Lenny informed me is "dead stuff like fingernails."

Maybe that's it, maybe that's what I would have told myself as I gripped the sides of the salon chair and got ready to have my head shaved: in a year you will go into the basement and find a hat box, you will open it up and take out your hair, and your husband will take a picture. The picture will be of you looking into the camera, smiling above the dead matter that had been lying in a box for a year. And you will think, better it than me.

Day 430: Katy's Guide to Glamour

There are many things that change after you are diagnosed with cancer; everyone warns you about this and the list of what will change is vast and overwhelming. Some of these things are true, and some are complete bullshit. Some are very unexpected, and tonight I have discovered one of those things.

I can no longer read women's magazines. At least, I can't read them without feeling like an expatriate reading about home and wondering why I don't recognize it anymore.

I might be an intellectual person on some level, but I've always loved reading fun magazines--People magazine during chemo; Glamour magazine on my couch; trashy celebrity rags on the airplane. The celebrity stuff is still entertaining, but I'm having a hard time with fashion magazines these days. As I was reading my most recent issue, I kept skipping around, wondering when I'd get to something I could relate to, and this is what happened.

Katy's Guide to Fashion:

How to find jeans that fit your shape. So they cover what to buy if you're: plus size; tall; petite; pear-shaped.

I don't think I am any of these things. What do you buy if you're somewhat apple-shaped but not entirely, and you have memories of having a big round butt that you don't really have anymore, and your legs are longer than your husband's? Oh well, never mind, I found those size 26 silver jeans and I have a million pairs of them. Next.

Katy's Guide to Beauty:

10 New ways to do your hair! Wait, what do you do when you don't have much hair? When you used to have long curly hair that you never needed to style, and then you were bald so obviously no styling was involved, and now you're just lazy? And what the hell is a fishtail and why would I want that on my head?

Moreover, why am I supposed to be impressed that Carrie Underwood does her own makeup and that she wears four kinds of mascara at a time (OK, that's kind of impressive in a creepy way). Now, I might be impressed if she managed to look "fresh" and "dewy" and "glam" with no hair, eyebrows, or eyelashes at all, but at some point you get past all that and go out of the house anyway.

Kate Moss, style icon! Yes, I suppose, but why does she cover her face with those huge sunglasses all the time? She's pretty, right, doesn't she get paid for people to look at her face? Is that really Kate Moss at all? Imposter alert! But maybe she's just used to them and doesn't know what else to do. I can relate to that, at least. I still laugh when I see those pictures of me from last summer when I was completely bald, but I still put my sunglasses up on my head, like I did when I had hair and I used them to keep the hair out of my eyes. So ok, Kate, rock those out. You win.

Katy's Guide to Health and Body:

(This one has too many possibilities, so I need to just narrow them down):

The summer snacks even skinny chicks eat! These writers need to get a clue. If you're skinny, and you're at the fair, the ice cream shop, the cookout, the movie theater, or the ballpark, you don't give a shit how many calories are in the ice cream (or you wouldn't have gone there) or the burger (or you would have complained about your thighs and refused to eat). You just eat that shit and exercise later. And no one over the age of 5 likes cotton candy, regardless of the zero grams of fat. It's sticky and tastes like cardboard. Come on.

Two of the five articles in this category related to sexiness: Have the sexiest vacation of your life (but don't forget the condoms! I guess this is why it's in the health category) and 10 reasons why you're sexier than ever this month (you're exercising more, wearing less, happier, etc.). I'm thinking, I can have sex now! It's great like before! My menopause is gone! Who cares if I have a week long period every three weeks! That's what towels on the bed are for! And, wait, did I just go on a 10 day vacation? Hell yes that's sexy! It was a VACATION! I came home sunburned, and bruised all over my legs from falling off a bike, with my hair finally looking red in natural light, weighing four pounds more than when I left, and yes that's sexy! Or healthy, or something, but who cares, it was vacation!

Katy's Guide to Men, Love and Life

The sex he'll never forget: Oh come on, this is ridiculous. Many of these supposedly embarrassing and bizarre things that people talk about have happened to me, and none of them were really mortifying, they were just funny. Besides, we've got the whole puking after chemo sex thing on lock. Don't try to beat that.

Can men and women be friends? Let's ask men! And find out that all six give different answers! My feeling on this is that men and women can be friends, especially if women stop trying to figure out what men are thinking because it doesn't really matter if you have fun together and he doesn't act like an asshole. Men might have trouble being friends with women who have breast cancer, however, because it's hard to be friends with someone going through something that involves both boobs and suffering, two difficult subjects for many men, and when you bring them both together it might be easier to just avoid that friend for about a year or so. The ones who don't do the avoiding are keepers though. Reading this made me think, do I still have friends? I think so...wow, that's impressive! I work full time, have two kids, had cancer, am dealing with two houses, and somewhere in there are some friends...good deal!

Why are women so obsessed with turning 30? Good question! Rather than go on and on about the sadness, the loss of youth, needing to turn to your mom for advice, just be glad you're turning it, honey. I probably had cancer at 30; 35 could have made me sad but I was a little too sick from A/C to notice, and I'm kind of psyched about turning 36. I feel like I've been 90, and very recently, and now I feel about 19, except for the old-lady stiffness and the post-baby hips and all of that. Forget 30, I'm talking about 40--I want to be 40! I would like to live that long, and get to middle-age.

Now, I know that Heidi Klum might have something to teach me about being hot after age 35, and I appreciate that she seems like a happy, nice person who really loves her husband and thinks he's the hottest thing ever, but I don't think it's practical for Gabe and I to find a babysitter and then have a "sexy week" in London that involves me wearing garter belts and really short skirts. And please, please, tell me, what in the hell is a "fallopian-length" dress?

I couldn't have made that up. Seriously, I'm dying to know. From my vantage point, it just sounds like something cancerous.

So, I get to the end of the magazine in about 10 minutes because I just don't find anything I can read for long. I tried to read the article about children who were abandoned by their mother and left in a horrifically abusive environment but I just can't read stuff like that, not when I'm just trying to see my kids grow up and I feel physically ill thinking about bad things happening to them. So what else to read? I don't have much hair and what I have is totally unruly. I wear the same minimal makeup as before and I wore the same stuff when I was bald (I guess that's known as a "rut."). I know I'm supposed to diet, especially since I'm triple negative and fatty foods are bad, but I'm enjoying eating food right now. I've had to buy new clothes so many times over the last several years as I've changed sizes that I can't just buy clothes because I like them; I usually buy them because I can't fit in the old stuff. And advice on how to cover up imperfections? There's a lost cause. I've got scars, tattoos, cellulite, that mommy middle that doesn't go away no matter what I do, and I think I can wear a bikini anyway. Why not, who cares, I'm over 35 so no one's looking at me anyway right?

Gabe and I had fun taking these pictures. How do I pose in a bikini? Wait, I know! Put on some nude heels! All these models do that, and it's completely ridiculous, because no one wears heels at the pool or the beach unless she is a moron, but here goes. And Gabe googled "how to pose in a bikini" and found an actual website tutorial, with pictures and step-by-step instructions. There was no advice on what to do if you have an enormous ribcage for your small frame, as I do, but we did our best. Good thing I was never a model, we were literally "ROFL" from some of the pictures we took of me clowning in the living room, but we found one that doesn't look terrible. So I ask, did I pass the Glamour test? Is this a Do or a Don't?

Or maybe an I Don't care?

Where's the article for bathing suit-buying advice for women with breast cancer? Mastectomy suit, anyone? Suit that covers your scars and tattoos? Nah, just wear the damn thing, if anyone's looking that closely, and that person is not your husband, you have bigger problems anyway. (One of my tattoos is visible with all of the swimsuits I own, but I didn't really realize until we were taking these shots that my lumpectomy scars are visible if I wear a bikini. Oh well!) These magazines are for fun, and I love clothes and stories about what women are doing around the world and I even love men, but right now I just don't relate. Don't get me wrong, I'm not canceling my Glamour subscription. I still enjoy reading it, but it just doesn't take me as long. And I laugh more, and think about weird things ,like did these models all get lessons on how to look cheerful and playful and exuberant?

I suppose they did, but at the end of the day, they didn't need to...just remember when you were a kid, a real one, jumping up in the air because you're so excited about throwing a rock into the lake. Remember that, take it with you. That's kind of what it feels like sometimes to be on the cusp of 36, while you look like a stranger to yourself and you have decided to wear a dress every single day to work because it's summer, damnit, and your husband paws at you all the time and you have a new job that doesn't yet make any sense and you fall off your diet and do daily, rather than monthly, breast exams, and you obsess about your birthday next month because you think...36, I think I'm gonna make it!

And I will just add one thing to the two last pieces in the magazine: "10 Times You Should Trust Your Gut Already:" followed by the Dos and Don'ts Page:

I say you should trust your gut all the time, because it's the only thing that's kept you alive these almost 36 years. Hair, makeup, yes that's all fun. But I'm giving a shout-out for this thing I've honed for years: An over-developed instinct for self-preservation. I hope my daughter has it...I know she will need it. It might not work for me forever, I might have worn it out, but in the meantime it was a definite Do.

'Night, all.

Day 421: Like Learning to Ride a Bike

Anytime anyone wants to explain how easy something is, how quickly things come back, how hard it is to forget things that happened in your past, they say that it is like learning to ride a bike. And I know exactly what they mean to say, but I don't really know in another sense, because I never learned how to ride a bike. My brother and I never had bikes as kids--except for a few weeks when I remember my brother trying to learn to ride someone's bike in the house (don't ask me why--maybe he remembers) and another day when a friend tried to teach me to ride when we were about 12. When I was 21 or so, my boyfriend, a master biker, tried in vain to teach me. And that's when I learned that there's a reason that people learn to do these things as children. You know more about falling as an adult, you have less trust, you carry more weight, and you have much farther to fall. They don't make training wheels for adult bikes, and you can't find a grownup bike with a gear cover. It was really hard, and I failed.

And yet, at some point last year, when I was missing out on everything that is summer (and not for any decent reason, like I had a newborn baby, but rather because I was recovering from two cancer surgeries or poisoning myself with a drug affectionately known as the Red Death while I struggled to walk my bald self down the street for my daily constitutional) I vowed that if my cancer went away and I didn't have a quick recurrence, I would finally learn to ride a bike in the summer of 2011.

The last time we came up north, for Augie's birthday in late May, we bought a men's mountain bike for $50 at a local rummage sale. The bike wasn't actually for sale--it was hanging from the rafters of the old barn where the sale was held. We bought a few other small things and I had Gabe ask about the bike. Maybe it's the economy, who knows, but they sold it to us as soon as we asked about it. The guy filled the tires and Gabe took it for a test run. There aren't any places out here to buy bikes, and he always wanted one that he could ride while we were here. And a day or so later I had my first bike lesson from my husband. It was kind of an abysmal failure. We weren't here for very long, and we could only practice while Augie was napping. This time, we have the same drawback with needing Augie out of the way to have successful practices, but we have more time to spend so it's not a one-off lesson. Lenny borrowed a bike from a friend back home so she could learn to ride without training wheels (her bike is big enough for a 10 year old--a great bike but too big for her to maneuver without extra wheels right now). When Augie went to sleep on Monday afternoon, Gabe got ready to teach the girls to ride. We took turns having him push us down the gravel road, which slopes and ruts and is generally not the easiest surface to try to learn to ride.

Oh, how frustrated I was. I couldn't get started at all. If Gabe got me started, I couldn't get going. I felt like I had so little balance it was a wonder I could walk upright. Lenny was having trouble as well, but it was easier for Gabe to right her when she was wobbly. I thought to myself, she is like a foot off the ground on that bike, and she weighs 32 pounds (we're actually really proud of her for weighing 32 pounds--you go girl, keep hulking up!). I, on the other hand, felt too high up, too heavy at 116 pounds, too clueless. It seemed kind of hopeless.

So what to do? Embrace the failure and try again, I guess. For all those who say you need a positive attitude to accomplish something, I offer this. Maybe you could have a positive attitude, or you could just have enough stubbornness to do something even when you think it's inevitable you will fail. I kind of walked through cancer treatment like that, thinking this sucks, it's insane to do this, these side effects are a total nightmare, this chemo has brought me to my knees, this menopause will never end, and oh well, let's keep on plugging, here I go again. Anyway, the next day, after a great trip to the beach (we have been doing everything on this trip we missed last year--hours on the beach every day, paddleboat rides with both kids, trips on the old fashioned steam train to the lumberjack camp/petting zoo, watching our first synchronized waterski show while eating some really good fish), we tried again. We remembered to bring out the iphone and after a half hour or so of practice, most of it spent trying to just get started, I took a video of Lenny as Gabe pushed her and then let go--and she got it. She was riding this little bike and I was yelling, go Lenny! great job! not even thinking about how all you would hear on the video is my voice and the roaring wind. I was so proud, but more than that, so happy for her. Happy that she would be able to ride with the other kids, do the things I couldn't do as a kid. Happy that like most kids she wouldn't remember much about learning to ride a bike (though knowing Lenny, she will remember the whole thing). What a great moment.

And then it was my turn again. I sighed, got ready to have my failure recorded on film. Lenny took the phone to shoot the video. Gabe helped me get started for the seemingly hundredth time, and I pedaled with him holding on for a little while. And then he let go.

And there I was, 35 years old, riding a bike while my 5 year old daughter took a video. I posted this video on Facebook. At the end, Lenny shouted "hey you guys come back. I can hardly see you through the video." My favorite part of that is that she thought that by saying it out loud, we could hear her. My second favorite part was that my daughter will always be on the record as the one who bore witness to the weird scene of her grown mother learning to ride a bike. (She also took this picture of me and Gabe--perhaps she's found a calling).

We've kept up the routine over the last few days, putting Augie down for a nap, going outside to the gravel road to practice. Yesterday we both got even farther by ourselves and I got out to the real, paved road, for the first time. Damn, how much easier that was! If only I had a clue how to get started myself, or turn! But now I know what the "it's like learning to ride a bike" statement is all about. Today, I learned to get started by myself. Tomorrow, maybe I'll learn how to turn. All of this has happened with 45 minute lessons every day with each of us riding half the time and Gabe getting a hell of a workout running alongside us the whole time. He has a lot of patience, and maybe too much faith in us. Yesterday he let me go for a while totally on my own, and I was fine. Then, on the way back, I just lost it, and took quite a fall. Ugh, to be 35 falling off a bike. I was scraped up, the gear gouged me, I was sore and stiff all night just like an old lady. Lenny fell, bled, cried, got over it two minutes later like nothing happened. Today I took another huge fall, into a ditch on the side of the road. Oh the pain, as well as some scratched up raised bump on my left arm that hurts still, all these hours later.

I think about these injuries, and I realize I'm not really supposed to do this. If I listened to the doctors, I would be wearing gloves to wash dishes or plant flowers so I wouldn't scratch my arm where my lymph nodes were removed. Many women with invasive breast cancer wear compression sleeves to do any exercise at all. We are all supposed to protect that side with some kind of fanatical desire to ward off an affliction that no one really understands--lymphedema. And here I am, with tick and mosquito bites all over that arm (one tick got me twice as I sat in the house, playing solitaire), scrapes, bumps, memories of the potentially poisonous plants that I've fallen into--all on that side. Oh well, what can I do?

I said I would learn to ride a bike, and to some extent, I have learned how to ride a bike. It's not necessarily pretty, and I don't know how to turn yet, but I've done it, and on difficult terrain to boot. I don't think I will forget how to do it. I know I will never forget how I did it, with my husband and my daughter right there, in the beautiful north woods of Wisconsin, while my thick unruly hair was blowing the little that it could in the strong breeze and my son was sleeping peacefully inside.

Some people join support groups, some women find fellowship among all the other women who share this common experience, others have affairs or get depressed or become vegan or all of the above. I waited for the weather to change, for the sun to come out again, and I learned to ride a bike, just like I said I would. I have no idea how many other things that I've never done I will get to do, how long I will live, how long I will be healthy. I told myself that no more summers would go by without me knowing what it felt like to ride down the street in the open air, and when I made that promise to myself I didn't know if I would be here for another summer. But i'm still here, and I did it, and it hasn't been so hard after all. Like learning to ride a bike.

Day 413: Heavy Sigh

Most of the time, I am simply amazed at all the bullshit that happened over the last year. I say that because it's a rare moment indeed when the whole thing doesn't seem real, when my life is that cliche: "it must have been a bad dream." Life is just so normal most of the time that I am beginning to understand why that can throw so many cancer survivors for a loop. My kids are having meltdowns at the pool and I'm pulling them aside, alternating between being a hard ass and trying to be nurturing (not necessarily my forte), and they're whining about pizza and I look up at the sky to assess the possibility of a storm and I adjust the tie on my bikini top and then I see my radiation tattoo and I think, huh, look at that. There's a sign of that whole cancer thing, right there in front of me. I almost forgot.

Almost. I think what's actually happened is that I have blended into the world so well--I look relatively normal, I feel extremely healthy, and I'm not regularly terrified or grieving anymore--that when cancer hits me, it hits me hard, because I don't see it coming.

I don't realize how much it's with me, I guess. While I don't cry at regular intervals anymore, I do get emotional at times that don't make any sense, even to me. Recently I realized that I've been having strange sentimental feelings when I'm around teenagers--especially teenage boys. Now don't take that the wrong way--let me explain. A few weeks ago, I went to see a friend's daughter off to her prom, along with a huge number of her family and friends. I brought the kids, and besides Augie's inability to be quiet, forcing us to leave early, it was a fun occasion. I felt very happy for the girl and her family. But then, just the other day, I got choked up (not that anyone could see--I know how to be tough and keep it to myself) hearing one of the teenage boys who coaches the rowing team talk about his prom.

What the hell was my problem? Is this one of those harbingers of middle age (I don't think I'm middle aged yet, am I?), when you get nostalgic about your youth and try to live vicariously? Was I having some kind of flashback to my own prom (or proms--I went to two; I think I went to 8 formal dances in high school...)? A few weeks ago I went out with some old friends and we were talking about our senior prom. Every single one of us lamented the fact that at our school at the time, you were required to go in a boy-girl pair to prom. You couldn't pay half and go alone, and you couldn't just go with your girlfriends, even though we all said that's what we really wanted to do. You just want to wear the dress and dance, right? You're graduating, you don't have a boyfriend anymore, you just want to leave it all alone. Ironically, whatever the intention of the school at the time, that policy just basically put a bunch of kids in sexual situations that should have been avoided when we would have been happy to be PG about the whole thing.

But I still got the dress I wanted--my mom and I went to the Jessica McClintock store, because I had seen this dress somewhere else and knew I wanted it. I didn't have a date yet, but I didn't care. The dress cost $98, which seemed like such a fortune (that's actually $8 more than my wedding dress cost--11 years later). There we were on the mag mile, and I felt so out of place around all the snazzily dressed, north shore daughters. I will always remember how another girl who was there with her father monopolized one of the few dressing rooms forever, whining in a spoiled voice the whole time so her dad would do her bidding. I tried on one dress--the black and white one in the picture, in two different sizes. I was trying to decide which size to get, when the girl saw me talking to my mom and told me she wanted that dress. She actually demanded to try it on--while I was wearing it. She looked at the sizes, told me that I was skinny so I should buy the smaller one so she could have the other one that would fit her better. I quietly went back in the dressing room, looked at my mom, and said, I'm going to get this one, right? That's right, she said, taking the bigger size up to the counter. Take that, honey.

I also had a fun experience the day of the senior prom when the clueless white lady doing my hair--all I wanted was a french twist--completely screwed it up by actually teasing it. I had long red ringlets (as evidenced by this picture taken at my high school graduation--I'm also amazed at my prominent, 17-year old booty), and she TEASED my hair. WTF? She said to me: It's so curly, I don't know what to do with it, and she asked me to leave. I was crying, thinking my senior prom was ruined, when my best friend saw me on the street. She grabbed me and made her hairdresser cancel his appointment with his own mother so he could help me. He did this masterpiece with my hair--some crazy Victorian updo that held up with a few bobby-pins and three spritzes of hairspray the whole night. The entire salon took pictures and he put me in his portfolio. My eventual date was the guy I dated for most of my sophomore year, and I don't think I let him touch my hair even when we were in the hotel room afterwards. It was like a work of art, not to be defiled.

Oh the memories. But I digress. None of this is what was making me wistful. I actually wasn't thinking about my own prom or teenage years at all until I started writing this and those two memories came back to me, making me laugh at the absurdity. It was something else entirely, and I felt so stupid about the whole thing until I realized what it was.

The thing is, I really don't know any teenage boys. I know a bunch of girls--babysitters, friends' daughters and nieces, my cousin. No boys though. And I think teenagers as a whole are very neat. I'm sure some are a royal pain in the ass, and my memories of being a teenage girl remind me that teenage boys can be horrible, even predatory. But for the most part, they're not like that. These kids are finding out who they are, and they're excited about everything and the world seems so romantic as they have the whole of it before them. At the same time, many of them have lives that are like mine was, and they very much live in the real world and work hard and have tough times at home. But there's still that aspect of becoming yourself that is so apparent. It's especially neat to see boys who are respectful of women, who are funny and thoughtful and well-spoken. It makes me want to meet their parents and say, nice work.

Hearing about a boy going to prom, thinking about him taking pictures with his parents, just made my heart catch in my throat. It's ridiculous, but deep down, every time I see one of these young men, I get this sinking feeling that I will never see my own son grow up, that I won't know what he looks like when his cheeks thin out and he starts to style his insane curly red hair and he learns to be shy and nervous around all the older girls who love him so much right now due to his cuteness. I fear that I will be nothing but a face in a photograph to him, a story his father told him, the phantom author of this strange little blog. Lenny is old enough that I can imagine what she will look like, what her personality will be like, when she's a teenager. Lenny, at least, could remember me if I don't make it out of this mess. That doesn't make the idea of not seeing her grow up any easier, of course. But I'm just saying--what about my boy, the kid who gets insanely jealous every time Gabe gives me a kiss, who holds his arms up to me so I can grab him and hold him, who can't go to sleep if he knows I'm in the house unless I put him to bed? Will I ever know what it's like to look up at him because he's taller than me? Will I get to wait through the years when he's embarrassed to be around me and get to the point where he likes my company again?

Or will he always resent that mother who left him, who did the one thing Dr. Spock said a child could never forgive in a parent, who died?

I mean, look at these kids! I know I'm biased, but damn they're cute. And funny. And a little crazy. And smart as hell. I have such an ache thinking about what they'll be like when they're older. It's hard to imagine, especially with Augie. And I definitely can't picture it with me. Will I get to be middle-aged? Will I get to be old? What will I look like, how will I be? I feel like a little girl, asking these questions, and I realize that one of the lasting effects of cancer for me is this wish: Could I have a time machine that simultaneously stops time and speeds it up? Could I find a way to look into the future without trying to get there too soon?

Frigging breast cancer, man, turning this practical woman (someone once called me "ultra-sane"), this cynical and happy go lucky at the same time girl, into a sappy idiot come summertime. As I said at the beginning, heavy sigh.

And I say heavy sigh because this is buried in me, it's not something I dwell on at all, but it's there underneath all the rest of my mundane life all the same. Everything about me--almost--is back to "normal," if I ever qualified for that term. My energy, appetite, sexuality, cycles, it's all back. The hair isn't, not like it used to be, but that's half chemo's fault and half my fault as I refuse to let it grow out. There's got to be something to remind me that all is not as it was, right?

But something else is there. It's deep in the real sense of the word, it's down there at the core--that fear, that longing. I heard once that clinical depression is simply the removal of the defense mechanism that all humans have that allows them not to think too deeply about death. I am not depressed at all, and my defense mechanism seems to be working pretty damn well as I go about my business every day. But every once in a while it falls away, and I see it--what could have happened to me if I hadn't been so aggressive in taking care of that lump, what still might happen to me no matter what I've done to fight it, what will ultimately happen to me, and to everyone, someday.

I could get more sentimental than I am apt to do, but the wistfulness has passed and I am re-entering the land of the old Katy. I'm thinking about Gladiator, that insanely violent movie that I actually really enjoy. And no, I'm not thinking about myself as a warrior or making some ludicrous comparison between cancer and slavery. I'm not thinking about Russel Crowe's vision of heaven. I'm thinking about Djimon Hounsou's line as he contemplates death and seeing loved ones in the afterlife. After I get over my strange emotions, whenever they hit me, it's what I repeat to myself inside my head. We're all going that way, me included, and cancer doesn't change that, though it might speed up the process. We're all going.

"But not yet. Not yet."

Day 406: To My Husband on His 36th Birthday

I figure I have a theme going here with these birthday letters, so it makes some sense to keep it up. Yesterday, Gabe turned 36. I didn't have time to write a blog then, because we went out to dinner right after work and then to our first Cubs game of the season. Besides, for the last two days, I've been at a training for work--focusing all of my brain power on "efficacy for women." While I take issue with some things we discussed and found other things useful, there is one thing that I definitely learned from this career development session:

Apparently, for the sake of all forms of communication, I am a man.

I'm not kidding. I literally exhibit every single one of the supposedly "male" forms of communication. I found myself sticking up for the guys yesterday, since I didn't want us to get too deep into criticism for something that I would eventually confess amounts to the way I go about things. Interestingly, Gabe exhibits many, though not all, of the traditionally female traits.

I'm not sure what this says about us. It could explain why we get along, or it could explain why we don't understand each other at times. I do think that if I were married to someone like me, there might not be enough sentiment in the house, or there might be too many sports channels. On the other hand, I guess I can just put all my sentiment here, and not have to say it, and pretend to be the soft one for a change.

Dear Gabe:

I know that I cannot give you the two things that you want for your birthday this year. I can't guarantee that my cancer is gone for good, and I can't magically sell our house. So instead I gave you a wrench (you asked for tools), a bike helmet, some dvds, push-up equipment (for me, I guess--someone has to join me as I work out all the time) and chocolate (you're the only guy I know who's addicted to chocolate). I gave you a trite card from the store. We went out to eat, saw a ballgame. You gazed at me all adoringly on the el like you always do and I rolled my eyes. You tried to kiss me too many times at the game and I got embarrassed. You carried my girly bag the whole time without batting an eye.

That day, your birthday, seemed so normal in a way for us. I think about what we've gone through, and I have to acknowledge that the tough times didn't start with cancer, and won't end there either. We are very different, you and I, and yet there are these ways that we work well together. I don't say that with some romantic vision of fate or things that are "meant to be," but rather with the same pragmatism that has captured our relationship for more than eight years.

It was at that time, when we were 27, that we met on a blind date, back when online dating was so different than it is today, less dramatic and intense. I had just broken up with someone and I didn't want to date anymore. I had seen your profile before and ignored it. You can't blame me for that. You mentioned your cats (I'm allergic to them), didn't say where you lived (I wouldn't have known where Country Club Hills was anyway) and were a little too deep for me, so it seemed. Plus, you were dressed in drag in the picture. Though it might seem natural to some that a straight guy would put a picture of himself on a dating site wearing pleather pants and a boa, it seemed a bit odd to me.

But then I got an interesting one-line email: "So what is it like to work in a think tank?" I knew I would answer it, and that maybe I would meet you (as long as you came to me, to meet in my neighborhood, which you did). So many other men commented on my red hair, my love of football or kung fu movies, or other things that guys would typically favor. Not you--you asked me about my job, about my brain.

That nerdiness ran through our first date, when you had that crazy floopy hair and you bartered with me so you'd get a second date, and you seemed so harmless when you said that you had taped a Buffy episode for me since I missed it the day before, and because it was raining you offered to drive me the block to my car and give me the tape, and then you kind of attacked me, which I really wasn't expecting.

We spent those first few months doing the things people do as they start a relationship, though things were dramatic for me for a variety of reasons. I kept that to myself, and it didn't affect us too much, thankfully. I liked that you weren't afraid to go on vacation with me so soon after we met. I wanted to go on a road trip, not get married, but that's not what most guys would've thought. And though you tell me now that you knew you would ask to marry me on that vacation two months after we met, I didn't foresee that at the time. I did, however, feel comfortable with you, and I could just somehow see it.

See what? Well, this, or something like this. The two of us living a boring life (oh how I've always wanted one of those!) together in a residential neighborhood, with a family, and all of that. It wasn't fireworks, it was just...there.

Ten months after we met we were engaged (after getting in a big fight since you were so nervous you acted like a jackass all weekend, and you proposed by taking the pearl ring our of your pajama pocket, asking if I wanted to "marry you anyway" while I was sitting there glaring at you, wearing my flannel nightgown and glasses, reading a book), and we got married eight months after that. We bought this house right before our marriage. Soon we had Lenny. Everything was perfect, right?

No, of course not. We went through a lot of hard times together. So many things have happened, but at the end of the day I guess I just had to trump all of them, and pull this cancer card out of my pocket. And what a trump, right? You once had a young, healthy wife with long red hair, who nursed your son and ran circles around everyone because she was too busy to sit down. And then, you had a bald wife, who was potentially dying, who was so weak at points that she had to hold one hand with the other in order to stop the shaking while she was feeding that same son his baby food from a spoon. You had a wife who was in menopause, who could no longer have any children, who had a burned-up chest, a tattoo where her perky cleavage used to be, short brownish-red hair, and all the rest. Where you had always been the crier, suddenly I was sobbing all the time; I was just beside myself when I had always had it so together.

You thought you would be raising these kids alone. I know you feel bad that I know you thought that, but it's not as if I didn't think that myself. Most of the time, we had this little cocoon built around ourselves and we protected each other the best we could, but it wasn't always easy. I wondered if we would make it through this if I made it through this, if that makes sense.

And we did--so far at least we have. I am healthy again, busy again, and let's hope to God you never again have to shave my head or stand in the bathroom consoling me while I vomit after we make love. Let's hope the times when you need to leave the room to cry lessen, as Lenny stops asking us if she will get cancer, stops saying she's glad mommy's cancer is gone because she knows I so easily could have died. I still could, I suppose. I can't make you any promises outside of the ones I made you almost seven years ago, and even those I feel like I might have broken:

"I will love you when we are together and when we are apart, when life is peaceful and when it is in disorder, when I am proud of you and when I am disappointed for you. I promise to try to make your life easier, rather than harder. I will honor your goals and dreams and help you to fulfill them."

I'm sorry for the disorder, and for the hard parts. I like to think I helped with the part about your dreams. You seem to be one of those men who want nothing more than a family life. I'm glad I found you, or rather that you found me, and I let you come around. You speak German, and I like this obscure German poet, so why wouldn't we include this poem in our wedding? (And what a wedding that was! On what should have been a beautiful October day, it was 37 degrees and raining. We got married at a community development corporation on the west side of Chicago, and the bakers refused to deliver the cake to that location until my mom raised hell. My brother almost didn't make it in from Budapest, which would have been a problem, since he was the MC of the whole thing; we didn't even have a wedding party. It was his job to announce to the reception crowd about the three cars that were hit by the wayward car in the parking lot. We didn't want gifts, but people brought them anyway, and we had to fit them all in the Jetta and drive them home to the south side. You asked what I thought about the whole day, if I got the wedding that I wanted. I told you the truth. I said it was perfect.)

“Secretly at Night” by Else Lasker Schuler

I have chosen you
Among all stars.

And am awake--a listening flower
In the hum of the leaves.

Our lips are eager to prepare their honey;
Our shimmering nights have blossomed forth.

On the blessed splendor of your body
My heart ignites its heavens.

All of my dreams hang from your gold;
I have chosen you among all stars.


It was much harder for me to write a blog for you, Gabe, than it was for me to write letters to the kids. I really didn't know what to say, and none of this seems particularly interesting or important as I read it back to myself. I am not good at romance or sentiment, at least not when it involves other adults; I am not even good at giving you compliments. But I am still here, and will be here as long as, well, as long as I am able to be here. Shortly after I was diagnosed you told me that you hoped we would grow old together, but if not, you hoped I would at least grow old, whether it was with you or without you. As you think about what it feels like to be 36, realize how young that really is. I guess I will make it there too in a few months, and perhaps we will both indeed grow old someday. If we do, why not do it together? You've already seen what it will be like when I'm old, you already know how to take care of someone with a terrible illness, and you're still hanging out with me. So let's give it a shot. Happy Birthday, Gabe, one day late. I love you.

--Katy

(These pictures uploaded in a strange order. There's one of our wedding photos, photos we took of each other on the beach in Maine on my 28th birthday, photos we took of each other this spring, a kiss in Michigan on our six-year anniversary right before I finished chemo, and one of the very first photos ever taken of us together, back in early summer, 2003).