Day 634: S*** Moms with Cancer Say

So I know I’ve written a bit ad nauseum about how cancer makes parenthood a little harder than it already was when I was just a normal, hard-ass working mom. For the most part, I think I’m the same kind of parent that I was before, but sometimes I wonder how I might react to things differently if I didn’t have the Big C lurking in the background all the time. Would I handle things better, or worse? Would I be more understanding, or less? Obviously I can’t turn back the clock, so I’ll let you be the judge. Here’s how we do it around here. I will vote for myself as a good mom, on the evidence that my kids are smart and interesting and reasonably happy and they make friends easily. I  can’t have screwed up too royally. But maybe you’ll disagree…

Here's an example of a conversation I had with Lenny, two days ago, when I was watching both kids while working from home and Gabe was at a conference after getting in a major car accident on the way there:

Mom, when were you born?

What do you mean? What day? Year?

Yes.

OK, well I was born on August 22, 1975. I don’t remember the day of the week, but I bet your meemaw does. You were born on Wednesday and your brother was born on Friday.

I was born on a day of the week before Augie?

Listen, rugrat, not everything is a competition. Anyway why do you think I remember?

Because you had us.

Yeah you came out of my body so it’s hard to forget.

Would daddy forget? We didn’t come out of his body.

He’d better not forget.

How come only mommies have babies?

Because only women can have babies. (Thinking to self, REALLY? You need to ask this NOW? When all hell has broken loose? Is it like a sixth sense?!) We have an organ in our bodies called the uterus, in your belly, and that’s where the babies grow. Men don’t have one. Then the baby actually is born through your vagina. Obviously men don’t have those either.

(HUGE EYES LIKE I’VE TOTALLY LOST MY MIND): REALLY?

Yep.

So someday if I have children I’ll be the one to have them?

If you choose to have kids, yes.

And Augie won’t?

IT’S NOT A COMPETITION. And no, he can have kids, in the way your dad has you guys, but he won’t give birth to them.

So the only thing a daddy has to do is marry the mother?

(Total exasperation at this point—trying to review a paper for work): No. It’s more complicated than that.

So what do daddies do?

Lenny, I’m just not prepared to have this conversation with you right now. Do you want a snack?

OK. Can I see the weather page?

Regular conversations with Augie:

YES, YOUR SISTER IS ALLOWED TO PUSH YOU IF YOU SIT ON HER HEAD.

GET OUT FROM UNDER THE TABLE OR I WILL HANG YOU UPSIDE DOWN BY YOUR TOES.

STOP WITH THE CHOKE HOLDS!

IF YOU HAVE TO TAKE FLYING LEAPS AND LAND ON PEOPLE, FIND YOUR DAD.

IF I HAVE TO PLAY THE GRUMPY OLD TROLL, YOU CAN ONLY GO UNDER MY BRIDGE. IF YOU TRY TO GO OVER AND JUMP ON MY LEGS I WILL…

“Hang me upside down by my toes?”

YES.

And so on. And right when I think he is just the most ridiculous bruiser in the world, he asks to listen to Yellow Submarine so he can dance. And somehow he’s really good at gymnastics, and can walk on the balance beam on his tiptoes. And he has perfect pitch. And he’s really cute, so I have to leave the room all the time to laugh after getting pissed at him. He tries to dominate conversations by singing. He’s as willful as me, if not more so, and much louder than I ever was. I argue with him about eating, he says, “I want to get down and play.” OK, that is obvious, how about this instead, or you know what, you won’t starve.

You’ll be fine.

Lenny is so jealous of her brother, and so bossy, and also so ridiculously bright. She’s five, and she’s doing division, reading chapter books and coming home from school with political maps of Africa that she color coded herself. The biggest issue we had when she had to wake up early this Saturday to go to the test to see if she can get into one of the selective enrollment gifted public schools was whether she could have a doughnut for a treat. She’ll probably end up at the regular public school. People tell me this is a shame, that she’ll be bored, and I say all the right things and think to myself, what the hell, it’s first grade, it’s not like public school will beat the smart out of her.

She’ll be fine.

Me on the other hand…who knows? Maybe I would have been this way all along—the one who talks to my kids like I am the absolute dictator of the land, but on the other hand asks them to explain to me what they’re doing, make up a story for me, and all of that. Maybe I would have put more thought into parenting and the right way to do it if I hadn’t spent most of Augie’s life unsure of how long I would actually get to be a parent. With Lenny, I feel like I thought about that stuff more. Now I’m just trying to get them to their maturity. Lenny is so pretty and boys like her already and I find myself wanting to toughen her up, make her scrappy like me. Augie is so wild and exuberant and I love it, I just think to myself, dear god I hope the kid just lives—that’s it, that he lives, and doesn’t turn my hair white too soon.

The kids play with Gabe, and they ask me what words mean. Sometimes I think they already know everything and just do this to humor me--or at least that might be the case with Lenny. I do the jumble every day in the paper and Lenny asks about the words she doesn’t know—and I just repeat them and use them in a sentence, or give her a straight definition. The other day, one of the words was biopsy.

Biopsy? She asked. BIOPSY. BIOPSY.

Yep, that’s it, that's how you pronounce it..

And she smiled at me. And didn’t ask me a thing.

Day 623: Cancer Mentors

Everyone who knows me knows that I am, in general, not a support group person. I am not really a cancer organization person either. I have become marginally involved in the cancer support group at the Federal Reserve Bank of Chicago (my employer) for two reasons. One is that the person who founded the group is another young triple negative breast cancer survivor who was very helpful to me at the beginning of my diagnosis, and I wanted to help her in return. Another is that I believe that there are human resources issues that should be addressed that directly affect younger cancer survivors who are in their prime working years, so I’ve become the squeaky wheel on that issue at the Fed. I also joined Recovery on Water (ROW), a crew team for breast cancer survivors, a year ago. I have been on hiatus from active rowing for a little while, but I am still involved with the team. ROW is decidedly not focused on talking about cancer but rather on exercising and fostering active teamwork. I only participate in one breast cancer fundraiser: the Beverly Breast Cancer walk; now that I’ve moved, the route will progress practically right across my new front lawn. I like it because it is not one of the many ambiguous events “supporting breast cancer” (whatever that means). The money raised goes directly to the local hospital where I did radiation every day for seven weeks, so I can get behind that.

Everyone who knows me also knows that I have a problem with complacency in my life. I am not able to just recover from cancer treatment, for example. No, I need to start a new job, buy a new house, get my body fat percentage down to 17%, or come up with some other cockamamie scheme. There’s one that’s been germinating in the back of my mind for quite some time, and I think about it often enough that I’ve decided to throw this out there and see if it sticks, if there’s anything there to go on.

I want to start a Big Brother/Big Sister organization for teenagers who have parents who have gone through cancer treatment. Call it Cancer Mentors, if you will. Here’s my convoluted thought process, so humor me: In most major urban areas, and many smaller towns, there are support groups, Gilda’s clubs, monthly meetings, etc., for those who are affected by cancer. You can attend these meetings as an active cancer fighter, a survivor, a caregiver, or a child of a parent who is going through a serious illness. You will meet people like you, who have gone through what you are going through. It doesn’t make it go away, but it can make it easier to deal with—if what you need is an understanding ear.

Moreover, while I have not been actively involved in the Young Survivors Coalition or other groups that bring together young people with cancer, I have learned something from attending ad hoc meetings for my cancer demographic. There are things that us younger adults deal with that are different than what children or older cancer survivors endure, including issues of sexuality, fertility, career advancement and discrimination, and parenting.

Being a parent of small kids when you are going through cancer treatment is hard. I mean, it’s really, really hard. It’s REALLY hard when those kids are babies who are still nursing, for example. It sucks to admit you can’t have any more of those cute little kids. It’s painful to explain why your four year old won’t be able to do gymnastics or swim lessons for the next six months, why you will be bald, why you will be scary and sick. It’s weird how you get emotional around other people’s kids, how you can barely stand to attend the recitals and performances, how you’re wistful all the time. It’s amazing to realize how imperfect you are, and you just have to cross your fingers and hope you didn’t screw your little ones up too badly at the end of the day.

And yet, I’ve come to believe that it is in some ways easier to have small children than it would be to have teenagers when you are going through this. When I decided out of the blue, in the middle of dinner, to tell Lenny about my cancer diagnosis and the reality of my upcoming surgery and treatment, I just gave it to her straight. She listened to me, believed what I was telling her, asked me some questions, and started to sleep better at night now that her crazy parents were no longer lying to her (“um, we’re leaving early today because we’re going to a meeting, Lenny.” “But you don’t even work in the same office.” Right, right.) I was the mom, and I made the rules, no matter how sick I was. I was in control of the message. If I wanted to stop wearing wigs to take her to preschool, what could she say about it? If I told her chemo would make me sick but I would feel better on radiation, she believed me. Talking about “bad cells” was sufficient. And for Augie, well, he knew something was up but of course couldn’t possibly understand what it was, not even being a year old when the shit hit the fan. I started writing a blog, knowing they wouldn’t read it until years from now, when the whole experience was hopefully much farther away. It was hard, absolutely, but I controlled everything.

Then I discovered something. The few teenagers I knew who had parents who went through cancer were voracious readers of my blog. One of our babysitters, whose mother had gone through breast cancer treatment a year or so before, continued to help watch the kids after I was diagnosed. She would text us on chemo days to see if we needed help, and I realized she was keeping track of when those days were. I could be bald around her and not worry about her feeling awkward. She would come over when we were both home, to help out when Gabe was just too overwhelmed emotionally, even when there wasn’t much to do. And we talked about cancer a decent amount; I was surprised about that at first. Also, my teenage cousin gobbled up my blog, often being the first person to read it; my aunt passed away from cancer three years ago, and the blog seemed important to her following that loss. My blog is long, and strange, and sometimes brutally honest, and I know it is hard for many people to read. So were these kids only interested because it gave a little glimpse into cancer in general, and that subject hit close to home?

I don’t think so. I think part of it was that I have always discussed in the blog what it was like to be a parent going through treatment, how I felt about my kids, how I did imperfect things as a result. What I understood from conversations with these kids and from parents who had cancer when their kids were teenagers was this: They talked about it a lot less than I talked to my own little kids. Other parents I encountered with little kids were often very honest with them as well, for the reasons I mentioned already. But for the teenagers, almost across the board, the details were left out, the hard conversations about suffering and death were left alone. Now , don’t get me wrong--it makes perfect sense to me. Teenagers know a lot about the world. They understand what cancer is, what it can do, and how bad it can turn out in the end. They also know enough of the world to subjugate their own feelings in order to protect someone else—their parents—from difficult emotions. Little kids are unable to do that. If they are hurting, they can’t help but show it, even in unconscious ways.

Teenagers can get distant or angry, self destructive or reclusive. They know when you’re lying, they know when you’re sugarcoating the truth. They don’t believe in magic, but they still think that they, and probably their parents, are invincible. They go online and do their own research about their parent’s cancer, and come to their own conclusions. They try to gain control of the situation, and are often put into caregiver roles themselves, because the strain on the other parent is too great, or there is no other parent, or simply because they want to help. And all the while, their parent who is going through cancer can’t, or really doesn’t want to, talk to them about it.

I am not out to change anyone’s behavior, to make teenagers talk to their parents about cancer. I also don’t think that as a society we need to say, oh, it’s understandable how that kid is behaving, look at what he’s going through at home. Sometimes kids—teenagers in particular (oh, how I remember--mom, I know how hard you tried to stop me from wearing this skintight, short skirt the night of my surprise 16th birthday party--yikes!) need a swift kick in the ass to get them back on track. But when you’re the parent with cancer, it can be hard to do that. You are already consumed with feelings of guilt and sadness, and you don’t want to play Bad Cop on top of it all. One of the reasons I think this mentors program could be a good idea is that I think it is unrealistic to expect parents who are going through cancer to be able to be the ones to hold their teenagers’ hands as the collective journey proceeds. On the one hand, you have cancer, and that’s the foremost issue you need to deal with, above and beyond everything else. On the other, you might be an emotional wreck yourself, and be less than an ideal candidate for solace. When a friend and I were talking about this recently, she said, “as a parent, wouldn’t you always look out for your kids’ interests and feelings first? Wouldn’t you always think about them first and yourself second, even if you were really sick?”

Nope. Or, maybe I should say, that might not necessarily turn out the way you’d think. Parents are human. It is almost indescribably painful to talk to your child about death, or suffering. You want to protect them from everything bad in the world, even when those bad things are happening to you. And, more selfishly—you want to see them grow up. While you steel yourself to do what you need to do to stay alive so that can happen, it can be an additional burden to have to be all practical and cheerful in your discussions with your children. You might do what I did, and go on walks or just generally leave the house all the time, because being around your kids at the beginning was too painful. You might quit your job, move, yell more or less often, pull yourself away from social activities, stop being able to go to your kids’ sports games, or do other things that are more in your interest than theirs. That’s ok. You have cancer, so you get a pass for less than perfect parenting. I might actually argue that putting yourself first is the right message—as a dear friend forty years older than me said when she learned of my cancer: “You do whatever you need to do. Lenny and Augie will get over it, as long as you’re still around.” You might not talk to your kids about cancer because my God, can you imagine not being around to see this beautiful, smart, funny, wonderful human being reach adulthood? You start thinking about who is going to give them advice, who is going to walk them down the aisle, who will help them find a job, if you’re not around. And then you cry and it’s hard so you don’t say anything.

And maybe, just maybe, that awesome and awkward teenager would like to know that’s what you’re thinking, but they know more than you think they do, and so they don’t ask because they don’t want to burden you. They lead you to believe it doesn’t bother them, which is total bullshit. So maybe that kid could talk to some other parent who has gone through cancer, one who would be willing to talk about the tough stuff from the opposite perspective, or talk about normal stuff that the parent going through cancer doesn’t have the energy to focus on right then. If your kid thinks it’s embarrassing that you’re bald, you don’t have to be ok with that. You do what you need to do and leave the wig at home and they can suffer that teen angst; there’s no time for guilt. But that kid could gain something from talking to some other formerly bald person, perhaps, to get some perspective on what’s going on there. You don’t have to stop asking your kid to make dinner if you’re too weak to do it, but maybe that kid could get some advice on what parents with cancer really can stand to eat. Going through menopause? Sleeping in a different bed from your spouse? Really skinny, or really fat all of a sudden? Don’t even try to talk to your teenager about that, but maybe someone else should. Someone with a little distance can explain. You get what I’m saying…let’s not talk about what it’s like to go through what you’re going through. Let’s talk about what it’s like to be the other person. Let someone who isn’t related to you bear the burden of telling it like it is. Maybe I’m nuts, but I feel like that could be helpful.

I know I wish I could ship Lenny to another parent sometimes when she tells me, after hearing that someone has died, that by the way, she’s glad I don’t have cancer anymore. When she asks how old I’ll be when she’s 80, I just cringe. When she talks about her hair and says she hopes she never has cancer so it won’t fall out from the chemo, I just say me too, and try not to bawl like a baby. I wish I knew what to say when she is sitting there reading the paper (yes, she’s five and she reads the newspaper) and sees that weather patterns have changed over the last 1,000 years. She asks, what will it be like in another 1,000 years, and I say, well, none of us will be here to see that—no one lives that long. No one, mommy? Not even me and Augie?

No, honey, not even you and Augie. Then I turn away with tears in my eyes, wanting to say, excuse me, but if you want to talk about that, can I call in one of the neighbors? That conversation is just too much. I just can’t do it. I had cancer—cut me some slack.

If this idea sounds like it has any merit, let me know. Perhaps the best strategy is to match a kid with an adult who went through a similar type of cancer as that kid’s parent. Perhaps the type or stage of cancer doesn’t matter—I’m not at that point in the thought process yet. Maybe this would best be accomplished as a side project of Imerman’s Angels or Gilda’s Club. Perhaps this whole thing is a terrible idea, or has already been done. Regardless, if you know any kids, or adults who went through cancer treatment while they had children living at home, and you think they might find this idea to be interesting, please put them in touch with me. I think it would be best one on one, with some kind of real matching process, to contrast with the randomness you are bound to get in any kind of regular support group. I’m putting myself out there as one of the potential mentors, obviously, so maybe there’s a kid out there who would find me useful. But you know, I have a big house, and I don’t mind talking about really strange things, so I could host a small group as well, at least at the beginning.

Just don’t expect my kids to be there. I’ll send them over to play in the park while we talk.

Day 621: Things We Lost in the Fire

Recently, someone I've known for most of my life pulled me aside, hugged me and told me this: I know you've been through hell and back, Katy. I'm proud of what you've done. You're through it now, it's over. Well, it's been an interesting few years, I said. No, not interesting, she insisted. It was hell. But it's over.

 

She had breast cancer herself several years ago. She went through surgery and radiation, but avoided chemo. She knows the story, has that thing that's much appreciated in cancerland: empathy, as opposed to sympathy. I've been thinking about this exchange recently, thinking about what it means for things to be over, for anything to be over. If you remember it, I suppose it's still there, it's still real. Does that mean that if you don't remember something, it never happened?

 

No, that's not what that means, but memory is a hell of an important thing. The other day I was smiling at a friend's video of her son learning how to walk when a thought struck me and I went from laughing to almost crying. I have no memory--almost none--of Augie learning how to walk. He took his first tentative steps around the fourth of July in 2010, when we were in the north woods of Wisconsin, a few days before I started chemo. I do recall a little bit of shaky walking on the deck of the house, but barely. I was still recovering from my second surgery, still reeling in the relief of my margins finally being clear and knowing I was stage one, BRCA negative and all of that, and I was scared shitless thinking about chemo. He really started walking a week or so later, and I was just in a fog--even though I never had chemo brain, my body was in such a state of shock in those early chemo days. We have a video of Lenny learning to walk--we actually staged it; put her Dolly on a chair across the room and made her go walk to get it. Poor Augie's got nothing. Gabe barely remembers those days either.

 

Sometimes I feel this cancer experience the most through the discovery of what is missing. Those memories of my son, for one. The ability to fantasize more than a few years into the future, for another. My long hair, that stuff that made people remember who I was, for a third. Some things are more tangible: for instance, I used to actually perceive my breasts as a part of my sexual life; they used to be an important erogenous zone for me. That's completely gone now--everything else about my sexual life is back to normal but that. Gabe has been bothered by this, but I've told him he can continue to enjoy them as much as he wants, but I just have this notion of breasts as harbingers of suffering that gets in the way of excitement these days. It's strange how that's happened, considering how normal my breasts actually look--almost exactly the same, save that small half-moon shaped scar. You'd have to do a double-take to notice. I was looking at myself, marveling at this fact, thinking about the physical distortions that other women go through that I was spared, when I noticed something else. What is that on my chest? Am I imagining it? Maybe I'm just flushed, maybe it's because I've been exercising.

 

Days later, I asked Gabe to take some photographs, to help me take stock of the situation. Now that I see the evidence, I know--I'm permanently sunburned on the left side of my chest, on my pec and my sternum, from radiation. I think it's fair to say it's permanent, since it's been more than a year. This bothers me at the same time that it makes me feel somewhat relieved. It's good to have some physical reminders of things, lest it all be wrapped up in my strange little mind, but it's tough to think about what that means--that I was burned so badly, that my chest muscles will, even according to my physical therapist, never be the same. I never even thought about what my chest muscles could do, what my pale skin was supposed to look like, until those things changed--until the old way went missing. So it is, I think, with most things. What is that saying? You don't miss your water until your well runs dry.

 

I've dealt with a lot of these intangible losses over the years, and I've mostly shrugged my shoulders at them, because when you consider what actually happened, things could have been a hell of a lot worse. I might have no memory of Augie learning to walk, but what does that matter to him? He can still run at me, do a flying leap, land on the left side of my chest, make me double over in pain, apologize and then sing me a song, all without considering the possibility that I might not have been here for that. And after more than thirty years of having pretty red hair be a huge part of my identity, I can now be one of those annoying people who can't really see the point of it anymore, thinking, damn, it really is just hair, what was all that time and fuss about anyway? I can sigh at the loss of my evenly-toned chest and then say, wait! What if I turn around? Can the strength I see there cancel out the weakness on the other side? Even if that's completely illogical, can I pretend just for a moment that it can? Can I stand here, rolling my eyes at my husband who is looking adoringly at my naked body, burns, scars, flaws and all, and say, this body still works, doesn't it? I've made it work as well as I could, so come on, take a picture. Who knows how long this will last, what we see through the lens?

 

Who knows?

 

Day 615: Survivor's Guilt

 

Almost a year and a half ago, I wrote a cryptically-titled piece called “Pontificating Blog” the day before I went in for my last AC chemo treatment. Though you can’t tell from the title what the blog entails, it has become one of the most popular of any that I have written. I suppose at its core it is a long and ponderous word maze through what it means to be a “survivor” of things, be it epilepsy, horrific car accidents, cancer, or any other method of cheating death. Sometimes when I read back on such pieces I am amazed that I had the presence of mind and the self-awareness in the middle of chemo to write about cancer the way I actually felt it, the way I actually experienced it, without caring about what other people thought I should say. For a long time I have felt that everything I needed to say about being a cancer survivor has already been said, was probably articulated at the very beginning of this so-called journey. Just the other day I told Gabe I wanted to quit writing the blog.

 

I think I was wrong, at least about everything being said already, though my days of writing this blog might be numbered. There is an aspect of being a cancer survivor that I didn’t anticipate when I was in the middle of fighting it: survivor’s guilt. I am not actually qualified to feel this yet in relation to cancer, and I’ll explain that further in a bit. But I am well-versed in what it means to feel survivor’s guilt in general. I was talking about this with Gabe last night, and I told him that sometimes I feel that if I understand anything in the world, I understand what might be termed the penultimate level of suffering. You know, the suffering you endure short of the ultimate suffering. In other words, I’ve spent a good deal of time looking over the precipice, into the abyss of brain damage, permanent paralysis, and even death, without actually having to go there.

 

Most people reading this know what I mean. I was the six year old who had upwards of 100 seizures a day and still performed at the highest level in school. The extremely toxic medication that I took to control those seizures for years thereafter almost killed me, poisoning my insides, permanently altering my liver, but granting me a three year reprieve from further medication by leading doctors to falsely label me “cured.” The “classic” tonic-clonic/grand-mal seizure that I had in front of the entire sixth grade put me back on medication but didn’t alter my life drastically.

 

The car that hit me when I was nine almost killed me, put me in a wheelchair for months, forced me to learn to walk again on my own with no physical therapy, gave me night terrors for a year and a lifetime of arthritis, but ultimately had no discernible impact on the way I’ve lived my life.

 

Enter cancer. I have gone through multiple surgeries, extreme doses of chemo, radiation, menopause, baldness, and fear. I’m still here, wearing this strange “cancer survivor” moniker, supposedly some kind of ass-kicker, an example of what it means to fight and win. But I am actually not that at all. I am only 20 months in, not at the critical two-year mark or the more comfortable three year mark that would tell me that I might have a reasonable chance of ultimately surviving triple negative breast cancer. One of the many reasons I have decided not to join cancer support groups, besides that being something that doesn’t fit with my personality, is that I can’t imagine I have any insight to give. I have survived breast cancer the same way that most women do. It is not the type of disease that usually kills you right away. If you are able to look back on your life ten years later, well, perhaps you are a breast cancer survivor. Until then, however, it’s the same business I’ve grown accustomed to: that penultimate experience, that constant question of what if? And never—really, for me, never—why did I have breast cancer? The question I ask myself is a why me? of a different sort. Why was I only stage one when the odds were so stacked against me to even detect my cancer? Why, when I have been on the shit end of the odds stick, with a rare form of cancer at an age when cancer shouldn’t even be an issue, would I not one day find myself with metastatic disease? Why would I survive this, when so many others do not?

 

There it is—a classic case of survivor’s guilt, which I would argue is not guilt at all, but actually realism rearing its ugly head in a society that believes that physical limitations impart weakness. This has come up so often over the years. Once on a blind date I discovered the guy I was meeting was disabled; he used crutches or a wheelchair due to spinal meningitis he contracted as an infant. He didn’t want to tell me beforehand, assuming I would refuse to meet him. We were able to talk about my experience being unable to walk, being confined to a wheelchair, and he seemed to find it interesting to find someone who had a taste of his life. But that’s it, just a taste, just a dabbling. That didn’t stick with me forever. I glimpsed the pre-ADA world of people with disabilities, but I didn’t live there for good. I was told I couldn’t return to school, because there were no accommodations for me. The assumption was that I would return when I was “better.” Of course, so many people never get “better.” How would life have been different for me if that were the case? There I was, a smart and curious fourth grader, being denied an education that would eventually lead to graduate school, all because a bunch of morons were waiting for me to shake off that pesky limitation called “being unable to walk.” As if it were their burden to carry, not mine.

 

I was almost denied even that same education years earlier, when teachers assumed I couldn’t perform well if I had epilepsy. My parents fought that notion and I remained in “mainstream,” even “gifted” classes. But there were many kids who were not so fortunate. I had no brain damage, no speech impediments, no visible marks of epilepsy, unlike thousands of other kids who had real cognitive delays or perceived cognitive shortcomings due to the disease. When I wrote a piece for CURE, just weeks before my breast cancer diagnosis, about my experience with epilepsy, I was unsure of what to say. What did I know, after all, about what it means to have epilepsy? To fight it the way my aunt does--with multiple types of uncontrolled seizures occurring every day, making it impossible to drive or even listen to music or use a computer--but raise a family and hold a job and live life like everyone else? I doubted the usefulness of my story, but came up with some anecdotes anyway, including one about having to tell boys that I had epilepsy when I went on dates as a teenager.

 

At some point in my life I remember telling someone about one of these experiences. When I was 14, I went out with a boy on the football team, and his mother drove us to the movie on our first date. There we were in the backseat, and I told him about my epilepsy, as my mother had instructed me to do, to protect him (never was I told that it was about me—I understood that part of the burden of illness was to protect other people from its effects) from being caught off-guard if I had a seizure when we were alone. I remember his mother looking at him in the rear-view mirror, assessing how well she had raised this child before he answered. He didn’t balk or even barely flinch, and he seemed to strangely relish the idea of rising to the challenge. I recalled how he got all chivalrous in that misplaced adolescent way, puffing up his chest and asking what he should do if that happened, how could he protect me? It seemed so bizarre all these years later, so absurd, and I laughed at the memory.

 

My friend’s response to this story was insightful: “Huh. You had epilepsy. And you dated boys on the football team?”

 

Given the ridiculous nature of those early romantic forays, I have to admit I had never thought of it that way. Other everyday things were ultimately surprising for their normalcy as well. My hips were broken in multiple places on both sides—a tough feat to accomplish unless you get struck with a force so fierce that it breaks the one side and flings you into the concrete so hard you break the other side as well. Yet I delivered two babies naturally, even after my OB told me the only way I might have trouble delivering is if “you know, you had fractured your pelvis or something.” Right Doc--all over the place. What price did I ultimately pay for that? Just a few awkward moments of him looking at me strangely, asking me to stand up naked, then assessing my hips with his eyes and declaring “what the hell. You’ll be fine.”

 

I’ve been robbed at gunpoint and made the stupid decision to talk to the assailant who had the gun at my head so I could get my keys out of my bag without him noticing. I’ve fought off many people who were bigger than me, boys and men stronger than me, and I’ve never been raped. I’ve seen my infant daughter suffer a terrible allergic reaction to cereal when we were in the remotest area of Wisconsin, far from medical assistance, only to have her recover on her own before the ambulance arrived. I’ve experienced horrifying bleeding at 26 weeks when pregnant with my son, only to have it turn out to be nothing but a burst blood vessel. There are so many examples, and I know I’ve gone over these here, but I’ve always come out on the other side. My life hasn’t been about these things at all. It’s been so relatively calm, interesting, fun, and yes, even normal. I’d venture to say it’s a normal, almost pedestrian life I’ve lived, with some curveballs thrown in, keeping it all in perspective.

 

I’ve often wondered what it would feel like to just live in your body as if that was the natural thing to do. Those who survive cancer are supposed to get back there someday, to that new normal. Regardless of cancer, I just don’t remember what it was like to take it for granted that I could think, walk, talk, go through the motions. We have so much focus on conquering our bodies, proving to ourselves that we can do amazing things, accomplishing athletic or physical feats that we thought were impossible. Though I focus on some of these things myself, I am never able to get too far into that mindset, having never had an assumption of youth, health and cognition on my side. The amazing thing is to do any of this at all, to put one foot in front of the other, every day, to wake up and find that these parts still work, and that yes, on some level, I am still young and vital. The amazing thing is how far away the alternative seems, no matter how many times I’ve stared it down. The things that haven’t happened seem impossible, even if they have almost happened to me, even if they happen to all kinds of other undeserving people every day.

 

I’ve said it before—“somebody else” is always somebody else to everybody until that person is you. Sometimes the only way to deal with this reality is to write long, ponderous blogs where you can admit that the word survivor is a strange, complicated, potentially even untrue term in your particular case, blogs where you can admit that the fact of survival right now, this very minute, produces feelings of both exhilaration and of guilt. Because even as you write you are thinking, it’s best to write this now, to document how it felt to have overcome these things, before they come back. It’s best to picture yourself in the getaway car before you get caught; just try not to look over your shoulder too much.

 

Day 605: Katy's 2011 Threw it in the Bucket Already List

Everyone who has read one of these blogs knows that I’m not a big fan of the notion that cancer gives you some kind of free pass for selfishness, or for being self-involved, or for focusing on your own happiness to the detriment of everything else. That’s part of why I’m continuously surprised that people continue to read this, when it’s mostly about me, though hopefully, it’s never only about me. Moreover, I’m not into dwelling on the past, but I’m not yet in a place where I can be assured of a long future. So, I’m going to make it my prerogative to write about this year, this 2011, from my perspective--what it meant to me. It seems like an exercise in vanity to say the least, but oh well.

It would be an understatement to say that 2011 beat the pants off 2010. And yet, 2011 was hard and painful, and I went through some very dark times. I suppose one of the victories that I can claim is that I can admit to that, and move on to my list of accomplishments that are impressive if only because they are normal, and normal was hard-earned and surprising for me this year. Obviously there are other people lurking in the background of this entire list, and I think you all know who you are. Suffice it to say I couldn’t have done any of this alone.

So here goes! These are not in order of importance (Except for #1, I guess), but simply in the order that they came to me.

Katy’s 2011 Threw-it-in-the-Bucket-Already-List:

25. I went on vacation—several vacations, in fact.

24. I started a new job that focuses on something I know nothing about.

23. I chose a style and I stuck to it (Jackie O dresses in the summer, Silver jeans, “cropped” sweaters and shirts that actually fit my short torso, heels even though 5’ of my 5’5” is legs, Issey Miyake perfume)

22. I figured out how to function on practically no sleep at all and refused to use being tired as an excuse; on a related note, I tried not to make excuses if the reason was “I don’t want to do that.”

21. I convinced a ten year old boy that a woman can, indeed, throw a perfect spiral.

20. I decided not to grow out my hair.

19. I bought a house, without worrying about selling the other one, and now I have the library, reading nooks, porch, laundry room and clawfoot tub I’ve always wanted, regardless of how much less money and sanity I have to show for it.

18. I learned how to row a long, skinny boat.

17. I found I didn’t entirely mind my newfound sentimentality; it matched nicely with my strange new tendencies to kiss friends, rub my kids’ backs, and let my husband paw at me all the time without wanting to slug him.

16. I overcame my fear of heights.

15. I wrote a few poems, along with 55 blog entries.

14. I came out of menopause as suddenly as I was thrown into it, and I re-discovered the amazing, natural, frequent sexuality I had always had and didn’t fully appreciate until I’d lost it.

13. I accepted, on a real and somewhat sad level, that I will never have any more children, not because I can’t, (see #14 ) but because it is simply not the responsible thing to do in our situation.

12. I got rid of every single item of clothing that was too big for me, including all of the maternity and nursing clothes, and donated all of our baby gear (see #13).

11. I reconnected with a bunch of friends I haven’t had contact with for years; forgave some people; and finally let others go.

10. I came up with an idea for a cancer-related nonprofit that I could not possibly act on because my life was just too busy.

9. I tried out a lot of new recipes and enjoyed eating every bite; I even figured out how to make a select number of really good cocktails.

8. I made some new friends, including a few who, based on the demographics, what we have in common, and the whole set of social norms, shouldn’t have become friends of mine, but did anyway.

7. I learned how to ride a bike.

6. I discovered that it is actually possible for me to become a “fan” of something, to venture into near-obsession territory, and I became a dedicated spinner (incidentally, that happened before #7).

5. I watched my son do so many things for the first time: speak in full sentences, dance, sing, go to the bathroom, defy me, put on his own coat and shoes, learn his letters and numbers, and generally do just about everything he will need to know to be a healthy human being for the rest of his life.

4. I saw my smart, thoughtful, empathetic, beautiful daughter become herself; the fact that it was hard for me to see her as a full person rather than a child prior to this year was due to my own parental blinders, not her lack of completeness.

3. I pushed until I got someone to listen to me, and I worked through the excruciating pain and scar tissue and muscle weakness, and I re-taught my body to do things, however gingerly and imperfectly and infrequently (look mom! I can do an extended arm plank--on the left side!) I thought I would never do again.

2. I really didn’t change, though many things about me appeared to change; I just learned how to shift the focus a bit.

1. I lived another year.

I realize that this is the time of year when most people make resolutions for how they will improve themselves, or at least their behavior. But I had cancer, and I don’t think I have to do that anymore. Though come to think of it, in 2012, can someone teach me how to drive stick?

Have a Happy and Healthy New Year, everyone.

Day 600: That's a Lot of Days

Six hundred days and two Christmases later, I guess I should just be saying hey! I made it this far, I've lived for a little while, haven't I? And that's true. That time has really kind of flown by though, no matter how much it seemed to drag when I was sick and terrified and too skinny and burned up and generally desperate for cancer treatment to end. It seems like hundreds of days, but it could have been hundreds of minutes. Back in May of 2010, I didn't know if I'd make it to Christmas, and even when I thought I probably would, I didn't know if I would have advanced cancer, or any breasts at all, or how it would be for me. I couldn't know how deep into menopause I would be that December, how I would hit my physical nadir with the lack of eyebrows and eyelashes and the ridiculous growing-in hair, and how it wouldn't even seem that strange to me, as it was just another of the phases I got used to like you get used to everything in this life.

And last Christmas I couldn't imagine how it would be in 2011, that my menopause would entirely disappear and I would have the regular cycles and sexual drive and function of a teenager. I couldn't imagine getting compliments on my hair and realizing that I will probably never go back to having long hair again. I couldn't imagine being in just about the best shape of my life and feeling better than I ever have, not when I felt so god-awful and tired--not just menopause-tired, not post-radiation tired, but tired of all the bullshit and how life was so much about just getting through the days. I couldn't know what it would be like to break through some of that scar tissue, to eradicate some of my chronic pain, to be able to do push-ups again, albeit on the wall. I couldn't have predicted that we would make the crazy decision to buy a big new beautiful house, that last Christmas was the last one we would spend in the house we lived in when we got married, the house that welcomed both of my newborn babies, the one that housed me during all my treatments, the one we spent seven Christmases in as an engaged couple, newlyweds, young parents.

I remember leaving a New Year's eve party early last year since I was so exhausted; how could I know I would host my own 2011 holiday party two days before Christmas, and that I would volunteer to cook and bake for all 60 people? That I would wobble around in some stilettos, just a little bit drunk, not even knowing or caring who was coming in and out of my house? Last Christmas, I was just a few months into being able to eat at all, and the thought of drinking was just a nightmare. I couldn't really hang around people I didn't know that well, because I was frankly a little scary and people didn't know what to make of me, and I wasn't vain enough to hide it, and I didn't care enough to ignore it, so a lot of times we just stayed home--by ourselves.

So clearly a lot has changed. It seems almost impossible that I had cancer, in a sense. The scary thing is that it seems that way to everyone who has any kind of early stage cancer. Some people get to keep that sense of wonder, that cosmic hand wiping your brow as you realize what a bullet you dodged. Of course, some people don't. Some people get through horrible treatments with as much vim and vigor as me, and then cancer returns, and they suffer again. Some people don't make it. You don't know which of these people you will be until you're at the end of your life and you either say, huh, this sucks, I should've lived to be 40, or you say, well damn, here I am in my old age, and I made it! The fact of my health right now is nothing more than that, a gift I am happy to accept, for now, for however long I have it.

And so, truth be told, many things are actually the same. In last year's Christmas blog I wrote: "There was a time back in May when I wasn't sure I would get to see this Christmas... I still wonder if it's my last Christmas, even though I know I'm not supposed to admit it." I also wrote: "I'm proud of some of the things I did. When I wanted to lose my mind, I just exercised. Compulsively maybe, but there are worse things." and "The one thing Gabe and I want for Christmas is the one thing no one can promise. We want for me to be done with cancer, to somehow know the unknowable. Because we can't have what we really want, we will be cliche and want what we have." and I noted that cancer "puts you in a deeper place, which is hard, especially for someone like me who is essentially light-hearted. I don't take myself too seriously, but I haven't found the levity in cancer, I'm sorry to say. It just kind of sucks."

All of that is still true, and I still feel all of those things almost every day. It's just a year's worth of days later. Of course, part of the underlying purpose of this whole online experiment in who out there could possibly give two shits what Katy thinks of her life, is that I have given myself permission to say things that everyone actually knows but people rarely say because it just seems too corny: the days are almost irrelevant; you feel the same throughout most of your life. At some point, you are formed, you are the essential version of yourself, and it's hard to pinpoint when that is. I think it's a lot earlier than we realize, and that's part of the wonder of time, it's the thing we always would like to know about ourselves that we in some ways have to rely on other people to tell us: Who am I?

I posted on facebook the other day the following status: "so when Lenny saw that Santa was in Helsinki on the Norad tracker, she pointed out that next he would be in Estonia (because, you know, she knows where that is), looked good and hard at his progress, put her fingers on the map to make a scale and mused: "Huh. I guess he should get to Chicago, what, around midnight?" Lord help me."

I realized at that moment, looking at the Norad tracker with my not-quite-six-year-old daughter, that we would always essentially be who we were right then: The nerds who have slightly unnatural conversations, who are surprised by and resigned to our mutual interest in each other as people. But I didn't write on facebook about how sentimental it made me feel, because no matter how often I put that out there on this blog, I still feel like an alien when I tear up over such things. That's just not me--it's not who I am, who I have ever been. And yet, there it is. Something has shifted, or awakened, and I am a little different than the old Katy.

But I digress (as I often do). As I looked at my daughter on Christmas Eve and thought about her future, what she might use her brains for, what she might achieve, all I could think was: I hope this is not the last time she uses her intelligence for something that actually matters. What grades, tests, achievements, scholarships, work or even fame could possibly be as important as staring at something that you know in your smart little mind doesn't make any sense, using your knowledge of things that should be beyond you to understand, and finding a way to believe in the magic you so want to believe in, so that you could be giddy and excited and full of dreams of reindeer before you fall asleep? I'll tell you, I'm no dummy myself, but that moment is it, that is what you need to know about life and what you should use to understand it--it's right in front of you when you're five, and you can't even see it.

When I was about Lenny's age my parents took me to see the play Brigadoon. I absolutely loved it and at the end told my mom "that was the best dream I ever had." I knew it wasn't my dream, I knew I was awake in the audience, but it was, on the other hand, wasn't it? That's it--600 days or however many, that's the best dream, the best magic, any of us can have. The most any of us can do is recognize it. I hope everyone had a Merry Christmas.

Day 593: Never a Lovely So Real

I'm pleased to say that last night I had another of these post-cancer (I get to say that now, right?) epiphanies. I wrote a blog last week about forgiveness, religion, my imperfect reactions to this strange trip, and, among other things, about potentially corrupting virgins (which seemed to be the most popular aspect of the blog). I realized that none of that was nearly as relevant as the date when I wrote it--December 12. I completely forgot to write a blog on December 10, which should have been one of the biggest red-letter days in Katy's Cancer Timeline.

On December 10, 2010, I finished cancer treatment--hopefully for good.

My mom and brother were at my house last night when I mentioned that I felt like I needed to write a blog to demarcate one year post-treatment. My mom laughed at me: "Who'd have thought you'd ever forget a thing like that?" And that's what's amazing.

I planned to write last night after I realized what had happened, but Gabe and I got otherwise occupied and then I fell asleep. Before that, I changed into the same outfit I wore last year on December 10 and posed for some identical pictures of myself, alone, with Gabe, and with the kids. I intended to splice them together so the difference would be easy to see, but I got lazy about that too. If you want to see how far I've come, how much difference a year can make, just check out that blog:

Look at that cancer girl! No eyebrows or eyelashes, awful chicken-little hair, exhausted from chemo-induced menopause! Then there's the stuff you can't see, the burned chest, the small bit of flesh that ripped off because I was so damn happy, yet angry, about everything that I tore my radiation tape off as soon as I came home from that last treatment. I listed all the things I had gone through, all the procedures, all the bullshit, in that blog. Reading it makes me tear up even now.

And then this year, December 10 rolled around, and I went with my family on a tour of the new Rush hospital just for fun, where Gabe won an autographed Paul Konerko ball in a raffle, and then we went to a kids' birthday party, and that night Gabe and I went to a holiday party just for grown-ups and had too many pudding shots. And December 10 just seemed like another day on the calendar in this busy month of this busy year, where cancer and its vestiges represent something that absolutely happened to me (I can't get away from it, with the daily physical therapy and chronic pain; I never actually forget it), but that in some ways happened to someone else, some scary-looking lady who only vaguely resembles me.

I knew there would come a time when I could selfishly be happy for this medium, this virtual time capsule. If I hadn't written it all down, if I hadn't photographed everything, would any of this seem real? Can the virtual make life seem more physical? In very specific instances, I guess it can. When major things happen in your life, it's hard to imagine what life was like before--before you were hit by a car, before you had kids, before you met your spouse, before you were suddenly grown up, before you had cancer--even if you do remember your previous life very well. It's just so hard to articulate it and make those mental comparisons. Writing this blog for almost 600 days and putting it out in cyberspace gives me a good hard slap in the face to remind me of my own experience at the same time that it helps me process the things that have changed, and the things that haven't changed.

And that's how life is--things change so much, and yet it seems that they don't change at all, that you are always just the same. I thought about this as I met up with a friend over the weekend and we went out for Indian food before going to a bar. I haven't had Indian food since right after I shaved my head, when I was at the beginning of chemo and I felt that I had an appetite for the first time in 10 days. I ate a normal amount of not-very-spicy, vegetarian dishes, and felt absolutely horrible afterwards as my body rejected the very idea that I would eat like a normal, albeit small, woman. I blogged about how after our date, I forced myself to throw up by sticking my fingers down my throat. I weighed about 111 pounds and didn't exactly need an enforced diet plan. How strange to feel so ashamed and relieved at the same time, sitting on the bathroom floor with my husband shaking his head at the whole scene. And then, this past Friday, I just ate and ate, and had a beer, and then went out and had another one, and I felt just fine. Amazing!

While we were out we got into a conversation that was at its core about the nature of time and the unique position of our generation. There is so much in pop culture right now that is nostalgic for the youth of my specific generation--the songs on Glee, the remakes of every cheesy TV show and movie, the hipness of moon boots and Ms. Pacman, the ungodly return of leggings. It seems bizarre to me, and somewhat sad. Who wants to relive their youth, really, at least the youth that existed the way it existed for many of us, with the absolute realness of life and the suffering and the hardship and the inability to control your immediate destiny, which is what youth is ultimately all about? Who wants to go back there, when you are in the place where you wanted to be back then but couldn't really imagine?

But after thinking about it, I've decided it makes perfect sense, this nostalgia that's taking over these days. In a way, we are the last pre-digital generation, and that explains about 90% of this current pining for the past. I think kids 20 years younger than me are in some ways nostalgic for my youth. They can't imagine how it was, and it seems so odd, it must be fascinating. We're the folks who showed up at college, and spent huge amounts of money to call our boyfriends back home long-distance from a corded phone to ask "do you have this thing called email? it's free. should we use it to keep in touch?" only to hear him answer "nah, what's up with that? I want to hear your voice." We did research using books and something called "periodicals" in the library, wrote papers on typewriters and word processors, saw our high school friends a few times the first year and then not at all. And sexy photos, sexting, and all of that? Huh? "No baby, I want to see you in the flesh." You know--the actual flesh. There was no substitute worth substituting.

And then those same boyfriends who couldn't imagine using email carried pockets full of change to call you from the payphone, and wrote you love letters with awkward handwriting, sometimes forgetting the stamp and having to give you the message in person. And you have a box full of such letters from various boyfriends, and from your friends, and even from your grandmother. Those letters are written on hotel stationery, napkins with various coffee shop logos, the back of cereal boxes. And you could gauge how much someone cared about you by how willing they were to read the letters you wrote, because you had the worst handwriting of any female on the planet, and your mind was too quick and convoluted to quip too easily on the page.

And when you said goodbye to someone, it was often forever. In that Kiss and the Story blog, I wrote about the boy I didn't kiss right before we both left for college. When he looked at me with that pained, bittersweet expression on his face and hugged me goodbye, that's what he was saying. Goodbye, Katy. Have a nice life. I wish I could have talked to you for hours before this, I wish I had kissed you before, because now I will never see you or talk to you again. Not, I'll skype you on Monday, we'll keep in touch on facebook. Will my daughter ever know what it's like to have a boy on the edge of manhood look at her like that? Does the fact that it makes me sad that she might not make me inescapably old-fashioned?

I know I sound 100 right now, and you all know I love my facebook and my virtual connections. I just think there's this strange acknowledgment of people my age who were the last to remember some of these things as they actually WERE, not as bits of nostalgia. The wooden phone booth? I don't love it because it's quaint. I love it because I've used it to call people from bars because I was a little drunk and I just had to tell someone something and he or she was the only person I could think of who would pick up the phone at midnight.

What does this all have to do with cancer one year later, now that it really is all over but the shoutin'? Well, this blog has enabled me to actually see what it was like, to remember how it felt, to go through all this crap over the last 18 months. And yet--and yet. It does not in any way replicate what it was ACTUALLY like. The photos of me last year on December 10 do not portray the me that walked around the streets of Chicago as if looking like that was normal, they do not portray the husband who honestly thought I still looked sexy after I was stripped of all the things that I thought made me attractive, they do not portray the looks I must have received as I jammed to Nelly Furtado's Loose on the daily drive to radiation. I know I don't look especially lovely in those photos, but maybe it was as Nelson Algren said about my beloved Chicago--you may well find lovelier lovelies, but never a lovely so...REAL.

You can look back, but you can't go back, and God help anyone who wants to do that. A year passes, and you can talk about what's changed, you can marvel at the things that remain, but the bottom line is that a year has passed and you were there to see it, and millions of other people can't say that because they can't say anything anymore. I could write about that, about what that means, but I could also try to show it, tell it, use it in real life to get someone to understand. The other day Lenny was whining about wanting something that Augie had, and I launched into this long, annoying mom lecture: "Lenny, you need to stop being jealous about the things that Augie does that are different. There are so many things you get to do that he can't do, because you're almost six, and he's only two and a half. When you were his age you didn't know how to draw, we wouldn't let you use scissors, you didn't do gymnastics and it was hard for you sometimes to use a fork. Be glad you're five. Be glad you're whatever age you are. Some people walk around saying, I wish I was young again, I wish I was a teenager again. But look at me, not me! I'm glad that I'm 36." "Why, mom?" And I answered, exasperated that every statement in my house has to be met with a question: "Why? Because! Because, Lenny...I earned it."