Day 1,071: Today My Son is Four

“The prime purpose of being four is to enjoy being four; of secondary importance is to prepare for being five.” –Jim Trelease

My son turns four today. He is a boy now, no longer a baby, creeping deeper into a childhood that will lead to an adolescence that I still fear I will miss. Every once in a while, I can envision what he will look like when he’s older, or daydream about whether his nutty personality will translate into years of entertainment or danger. I don’t have as much reverse nostalgia as I had in 2011, when the sight of boys of just about any age could send me into an unexpected tailspin of grief, but it’s there sometimes all the same.

I am not one of those mothers who laments the time that has passed. I don’t get wistful over babies or clothes my kids have outgrown or memories of their past selves. Perhaps I would have never been that way, as I am not particularly sentimental. I’ll never know now whether that is the natural state of affairs or the change in perspective that cancer brought into my life. I am the mother who gets this aching feeling when I think about my children’s future selves, the various phases and ages that I can only imagine. I would love to speed up time and see them as adults, safe and secure in their grown up sense of themselves, but of course I don’t want to miss everything as it actually happens.

Reverse nostalgia; one of the side effects of cancer treatment that I didn’t see coming. I don’t know why I feel this more intensely with my son than with my daughter. Perhaps it’s because I am a woman, and I was once a girl, and therefore I can see her in myself and imagine her in ways that aren’t available to me with him. Or maybe it’s because his personality is so extreme and I don’t know how in the hell that’s going to play out over time.

Or, maybe it’s because he was just a baby, nursing happily on my cancerous breast, when our lives turned upside down, and I had no idea back then if I would see him reach kindergarten. Of course, I still don't know that, but the possibility is seeming more and more likely as time passes.

Four is an age that is often overlooked. People have few memories of four. Children aren’t enrolled in traditional school yet. Sometimes, preschool friendships survive into adulthood, but not often. Adults are prone to underestimating the feelings or experiences of kids that age. At four, you are too young to make big decisions, but too old to be immune from the ramifications of small decisions.

What can happen at four that really matters?

When I was four, my mother died. She bled to death internally after an operation. She was resuscitated and brought back to life. She was in a coma for weeks, in bed for months. My grandmother took care of us during that time. There was a huge snowstorm that year that effectively shut the city down, and I walked to preschool through snowdrifts taller than me anyway. When I was four, I stopped sucking my fingers. I could read and write and I kept stats at my brother’s little league games. When I was four, the only decade I had ever known turned over. When I was four, things happened that were important.

When my daughter was four, I was diagnosed with cancer. She spent almost her entire fourth year dealing with a mother in aggressive cancer treatment. And yet so many other things happened as well. I just asked her what she remembers about being four, and this conversation ensued:

L: Oh, I don’t know. That was such a long time ago.
A: But then, if she doesn’t remember, how will I know what to do when I’m 4?
L: It just comes naturally. You knew how to be three, didn’t you?

Ah yes, children don’t understand anything, do they?

My son is so little, and so old. He is so aggressive, and so empathetic. There is a storybook that we read where a bunch of animals have a sleepover, and the owl is left to play checkers alone because he is nocturnal. Augie always says that he would like to be in the story, so that he could play checkers with the owl, and he wouldn't be alone. He wants us to understand that he doesn't feel SORRY for the owl. He understands that the owl might be happy; he simply would like to offer to keep him company.

Augie is the one with rhythm, the one who can’t stop singing and who remembers every lyric to every song he's ever heard, who loves to get naked and ask inappropriate questions about alcohol, the one who looks jealous in a real, grownup way every time he sees his parents kiss. I’ve written about him before, but I often don’t know what to say. His personality is, in some ways, best-suited to short-form writing; Augie is like Twitter personified. He is just something else.

The things he says are just too much. Sitting at the breakfast table when he was 2 years old and could barely speak; he turns to me and says, 19 more years, mommy. 19 years until what? Until I can have a beer. When I asked him why he couldn't just listen, he said, You know I'm three, right mom? I'll listen when I'm six. This is the kid who, at two and a half, when asked what he would ask for from Santa for Christmas, got a really mischievous look in his eye and said: A Mountain. He's always asking about girls, always shaking his booty. Always giving us reason to just shake our heads.

Teenagers and young adults love this child. He steals the spotlight away from other kids, away from our daughter. He uses his cuteness to get his way, with other people anyway, since it doesn’t work for him at home. He is charming and manipulative and devious and willful. He’s funny. He loves animals; in fact he loves them enough to give up his mamas cold turkey so that he could watch the class hamster for the week of his birthday. Last Wednesday, I told him he couldn’t have the hamster come home with him if he didn’t give up his mamas at night. He looked at me and sighed. I know, mom. But not tonight. And he put one in his mouth and held onto the other one and would not budge. Not tonight. And then the next night, Thursday, the night before we were to bring her home, he gave his two mamas to his father, and he was done with them forever, just like that.

.

This one, where do his questions come from, how does he know what he knows? What’s behind those eyes? He will deliberately disobey me, make a mess, take his pants off, start singing and dancing, punch something and start making animal noises all within the span of three minutes. And then, he will pause. And he will ask me a question:

Mom, when we die, who is left alive?

And his father and I will raise our eyebrows, and his father will begin to talk about the memories that our loved ones have of us. I am a mother, so I say this: when I die, you will still be left alive.

And he will sigh, looking at us like we have obviously failed to understand the question.

No, I mean, when we die, who's left? What’s left?

And all we can do is look at each other, knowing that he knows what we know.

Happy four, kiddo. I’m so glad I was here to see it. Here’s to more years of you teaching me a thing or two.

Day 1,049: Iron Woman

I think I held up pretty well this week, considering. My three year cancerversary came and went, and I didn't feel much like celebrating, since I still had to get through today--the first time that I had been allowed to go a year between mammograms since the whole mess started. I also had visits with the surgeon and oncologist, so both Gabe and I took the day off of work and my mom agreed to pick the kids up from school. I have been distracted, and last night I snapped at Gabe and felt jumpy and made myself what will now be my go-to drink the night before such procedures:

A "Suffering Bastard."

I mean, if you're going to be in the drink-naming business, THAT'S what I'm talking about--none of this juvenile sex on the beach crap. Alcohol was invented for a reason, and that reason was to drown some sorrows and maybe help you sleep when sleep seems impossible.

But I didn't do anything wildly self-destructive or insane, and I did eventually fall asleep, and then I woke up, and then...

The only detail of the day before the procedure began that will stick with me was this: my undeniable nervousness in the car on the way to the hospital. It's a damn good thing Gabe drives to these appointments. I am always so distracted, heart beating fast, trying to find something to concentrate on in the distance or on my phone, secretly glad that traffic is slow, as the inevitable is thankfully prolonged.

The same nervousness--so hard to explain, even to those who also get nervous at mammograms. I get it. But you know, the very first one I ever had was under very dire circumstances, and the news from it, well...So, waiting, and so so nervous, hating the jackass who left nothing but goddamn YACHTING magazines in the breast cancer ward. Seriously, there's a special place in hell for him. Then, the smiling tech comes over and starts the small talk and asks how I'm doing and I say:

"This isn't my favorite place to spend the day."

She asks what I hate most about it? Is there anything she can do to make the experience better for me?

"Well, I doubt it. Because, you know, I had breast cancer. So I'm never going to like this. Plus my breasts aren't big and the left side still hurts all the time so I know what's coming."

She's sympathetic. And brutal. Mammograms are so dehumanizing in the way they make you contort yourself and the way they treat such a sensitive part of your body as if it is jello for the mold:

I'm sorry but I'm going to really have to grab a lot of tissue here. This won't feel good.

Right.

Ugh, I wince in pain where my surgery site feels like it's on fire. I go back to wait for results. Nervous. Nervous. Phone quickly losing juice. Texting Gabe to let him know I'm done but waiting for the radiologist.

"Ms. Jacob, you need to come back for a few more pictures on the left side."

Heart caught in my throat. Woman, don't you know what happened the last time someone said that to me?

More contortion, more pain, more apologies and small talk and more of me not caring until they can tell me what they found.

Back to waiting. Gabe texting me all the things it could be that they're looking for: calcification, scar tissue, me thinking yeah that and CANCER.

The radiologist calls me in, and again my heart catches in my throat.

It's the woman who diagnosed me with breast cancer. The woman who performed my second ultrasound herself after she saw the telltale circles at 3:00 on my breast on May 3, 2010. The one who performed the initial mammograms, gave me a piece of paper that said there was concern that my mammogram showed a possibility of breast cancer, and offered to do the 7 core needle biopsies herself, on her lunch hour, right then and there. The one who called me to give me the news, whose naturally cracking voice broke on the phone when she told me to find my husband so he could take notes.

She looked at me and said: "There are a few spots that are probably calcifications that we'd like to watch in 6 months."

Um, ok, I said, what does that mean? Should I worry?

"I wouldn't worry. You have had a few spots and now they are forming a circle, right near the lumpectomy site. It's fairly common. We will watch it to make sure it's not something else."

FORMING A GODDAMN MOTHERFUCKING CIRCLE?

is what I thought. Circles inside the body are BAD. I just looked at her, asked some more questions, she answered in the noncommittal way that says we think you're fine but we're not going to say that because we don't want to get sued if the shit hits the fan, and I went back to get dressed.

The radiation tech came with me. She grabbed my arm and told me that if Dr. W. thought something was wrong, if she thought it could go "the other way," I would be lying on the biopsy table right now. She gave me a long explanation for why this is a common occurrence after breast surgery. She kept talking about how good and thorough the doctor was.

"I know that," I said. "She's the one who put me on the biopsy table in the first place."

I felt...well, kind of relieved, but not as relieved as I would have liked to feel. I wanted to have another year, not six months. The surgeon saw me, thought I looked amazing, the oncologist said the same thing: "everything seems fine. you look great. have a good summer." Neither of them took much stock in my chest pains or breathlessness issues. They seem to think I'm OK, that I'm actually NED, that I've made it to the three year point. I feel happy, yet ambivalent, a sense of relief and a sense of trepidation, suspicious and grateful.

What a strange cancer trip this is.

After the last doctor's appointment, Gabe and I went for an early lunch, then he good-naturedly hung around while I went shopping for a bit, then we walked along the lake, and then we went to a movie. If the first half of the day hadn't been spent in the cancer ward and if we hadn't needed a sitter for our kids, this long day would have been like one of those dates we had back when we first met, when we had nothing but time for each other.

We drove to our favorite theater to see Iron Man 3. The irony was not lost on either of us. The last time we went to see Iron Man in a theater, I had been diagnosed with breast cancer just days earlier. I remember the scene where Tony Stark talks about the poison in his body that was keeping him alive, and I remember thinking how surreal my life had become, that I could relate to a fictional superhero better than I could relate to regular people in my life, like my friends, my neighbors, my kids, my...everyone.



This time, we were much more relaxed, obviously. We put the arm rest up in between us and I swung my legs over Gabe's and yeah we are still dorks like that. We enjoyed the film, even when it got ridiculous. Near the end, Tony was talking about being a changed man. He lamented how hard it was to live with shrapnel in his chest. The monologue continued, and I looked over at my husband, not for any reason, just because that's what couples do periodically when they're watching a film.

He had taken his glasses off, and he was silently crying.

I looked away, looked back at him, and asked him what was wrong. He said, "you know what."

How hard it is to live with all this shrapnel in my chest.

I looked at Gabe. He said, "You don't have it anymore." He cried a little more and then he stopped.

I sighed and rolled my eyes and patted his thigh because that's what I do when he cries, since I'm not good with crying. He smiled at me, as if he knew what I was thinking, but he didn't. I wasn't thinking about Iron Man, or cancer cells or the metal that is, in fact, still in my chest in the form of staples in my tumor sites. I was thinking about this:

The doctor who diagnosed my cancer, the one who gave me the worst news that I have ever received in my life up until this point, handing me a piece of paper and telling me I am probably fine. She shook my hand, looked right in my eyes and said:

"It was nice to meet you."

I was thinking about how she didn't recognize me, she didn't remember me. I was thinking that is because she is busy and sees lots of people and her relevance in my life is a thousand times greater than my relevance in hers. But as my husband dried his eyes and took my hand to lead me out of the dark movie theater, as he put my purse on his shoulder as if we had been married 50 years, I was thinking this:

Of course she didn't recognize me. Back then, I was somebody else.

Day 966: Love in Cancerland

This is my third Valentine's Day since being diagnosed with breast cancer. I've never written a Vday post before, because there's not a lot that the holiday has in common with cancer. I've done my share of writing about how cancer affects marriage, sexuality, and romance.

I'm essentially lazy these days, so I ordered my husband some chocolates, which I have enjoyed as much as he has, and I bought him the one card I could find at Walgreens that didn't suck. And I wrote him this. Happy Valentine's Day, babe. May we always remember the various ways that love shows its face. Oh, and for those who are concerned about what I wrote in the last post, my boobs seem to be calming down these days, and I don't anticipate needing to go to the oncologist anytime soon. And that, my friends, is a good Valentine's Day present.

Summer Love
by Katy Jacob

In the heat, I stripped off my clothes.
You stood behind me,
touched my face, bent over me, got to work.
The kids slept soundly upstairs.
We were alone together,
in the basement, in the bathroom.
Underground but the humidity still seemed to rise.
Even the mirror began to sweat.
I stared straight ahead
at our reflection, an image of ghosts.
You couldn’t help but cry.

Lost in ourselves, a series of vignettes:
You reaching for
a disposable razor and
a 79 cent can of shaving cream.
My eyes getting bigger,
if only in comparison.
Heaps of hair on your arms,
on your shirt, covering the floor.
The virgin skin of my scalp
unmarred by nicks, or blood.
The small clock laboring in the
slow motion eternity of its ticking.
The midsummer darkness descending.

If I were to write a poem,
I would include these details.
But were I to grow old,
I would remember only this:
Your perfectly steady hand,
being as careful with me
as if I were your child.

Day 964: Breasts

I've been writing a breast cancer blog for what, almost three years now? God, that sounds strange. That means that I might make it to that magical three year mark, that timeframe that is supposed to be so relevant for us triple negative girls. So I've been writing this blog all this time, and I realize that I haven't written very often about...

Breasts.

As in, my breasts, the entities that started this mess.

Oh, I know I've written about how I've always liked them, or didn't think they were small before cancer, or how people tell me I have beautiful nipples or how amazing it is that they still look so normal after all this shit. I've posted pictures of my scars and radiation burns. I've described the heartbreak of weaning my son.

But I haven't talked much about what it's like to have breasts after you have breast cancer.

Many women don't have breasts after cancer, or perhaps they have one, in the singular. Others have manufactured breasts, which is also different. A lot of women wonder how or why you'd want to keep your breasts after cancer, as if they are actually personally responsible for the disease; the idea of having to get mammograms is equally repugnant to some.

And I get it. I get that I'm lucky to still have breasts, and that at the same time my decision to still have them will bring me at least semi-annual bouts of panic and fear. But breasts after breast cancer are just not the same as breasts before breast cancer, and that's what I'm writing about today.

See, before cancer, breasts are a source of wonder and enjoyment in your life. I've had these 34b boobs since age 14 and they always seemed just perfect to me--easy to fit into clothes, not too small, apparently amazingly awesome and seemingly blessed with superhuman powers in the eyes/hands/mouths of teenage boys and later men. They were an erogenous zone for me and for other people. They hurt before I got my period, they swelled when I was pregnant, their existence helped me figure out which guys were assholes based solely on how they talked about them or referred to them. They fed other human beings. They served as a nice place to rest my hands when watching TV (sorry, ladies, I know we've been trying to convince men since cave times that we don't play with our breasts but WE LIED).

And then...my closest call with death is brought to me courtesy of these breasts. I go through painful and (somewhat) disfiguring surgery. I burn myself. I learn that my husband can almost kill me by passing mastitis to me by kissing the breast that had cancer. I can't feed my baby with them anymore. I can't wear underwire bras due to the location of my scar and scar tissue. I have to modify exercises and learn to carry things in a different manner. I find our collective focus on them as a society to be pointless and offensive.

My attitude towards them has changed, but it's subtle, in the way that so many cancer-related things are subtle when you are not deep in the weeds of treatment. I am still very happy with what I've got left. I still allow Gabe to play with them and kiss them (well just the one, no more mastitis thanks) as much as he wants but that's what it is, allowing him to do something I used to enjoy. I still buy the cutest bras I can. I am still amazed that they are so symmetrical. I don't do breast exams because I feel my breasts every day. I am aware of the pain in my pec muscle, a vestige of radiation, every time I exercise.

And the things that might make other women happy just scare the living shit out of me.

The other day, I noticed that my right breast seemed bigger, fuller. We all know that nursing causes that nice slope to the breast, something that manifests as "sagging" if you've got larger breasts, but was barely noticeable for me. Due to that slope, my cancer side actually looked perkier a lot of the time (thanks for the plumping, radiation and scar tissue!). Now all of a sudden, the right one seemed...big. In a nice looking way. I was reminded of the full perky breasts from my pre-baby days, a subtle difference for me, the woman whose body seems hellbent on looking the same no matter what happens, but there all the same.

I was terrified. Sure, this happened right before my period started. Sure, I was having pain in both breasts for a few days, probably due to hormonal changes with my cycle. Sure, I've gained about three pounds and maybe some extra ounces went to my breasts.

Sure.

I tried to ignore this, but two days ago it just seemed crazy. I stripped my top and bra off in the most un-sexy way you could imagine and demanded that Gabe look at my breasts and tell me if the right one looked freakishly large in comparison. You ask your husband to give you an assessment of the size of your tits, this guy who has been enjoying them for the last ten years, and if you haven't had cancer you expect a different answer than this:

"Yeah, I noticed that. Is that because of your period? You should keep an eye on it. Maybe call the doctor. Or give it a while, and then call. Yeah, you should call the doctor."

The following day you strip down again and this time you are pleased that the right breast seems smaller and it doesn't even seem weird when you hear the relief in your husband's voice when he says "yeah, it's smaller, looks more normal now. whew!"

Then today it's bigger again. Some women would flaunt the extra cleavage, especially since we're going out tonight for Valentine's day.

Me? I called my oncologist. I'm still waiting to hear back from him. Maybe he will tell me to wait, maybe he will tell me to come in, maybe he will order tests, maybe he will tell me that I'm fine and I look great which is what he usually tells me. I have no idea. So, I wait.

That's it this time--no deep thoughts about life, no poetry, no larger worldview context. Just a youngish woman with perky but lopsided breasts who understands how symbols of life can also be symbols of death. This post is just to acknowledge her, this woman who is waiting for the phone to ring, daydreaming about a day in May when she could say she made it to some milestone, thinking about how a once-proud sign of womanhood that our society has never figured out how to take seriously could turn into this, a possible portent of bad things to come, reminding you that the body is a mystery in which often neither the perpetrator nor the hero is ever revealed.

Day 924: A Letter to My Daughter on Her Fifth Birthday

As I have been trying to help promote this year's Listen To Your Mother--Chicago show (submissions are due January 15!), I thought it would be a good idea to include the text of the piece that I performed in the 2012 show; this piece, in this exact form, hasn't been posted here yet. You can see the video on youtube (turn up the volume!), read the producers' feelings about it, or ponder my own thoughts about what the experience meant, but maybe the most useful thing would be to show you what I said. And yes, I mean said, not read. Because Lenny was in the audience, and I said this to her.



A Letter to My Daughter on Her Fifth Birthday

by Katy Jacob

Dear Lenny:

Today you are five years old, and I am writing you a letter. In some ways this entire breast cancer blog of mine is a long letter to you and your brother. I write it with the selfish hope that if I don’t survive, you will know something about me, other than that I loved you and cooked good dinners and made you laugh. It seems to me that almost everything about how a parent loves a child is selfish. We want things for you, we steep ourselves in denial for you, but really we do those things for ourselves, because you have taught us how short our lives really are. You make us wince with your innocent curiosity: “When I am grown will I still see you every day?” “How old will you be when I’m grandma’s age?” “Will I have long hair, or do you think I will get cancer and my hair will fall out?”

And it is upon hearing those questions that we make choices. We make the choice to acknowledge the imminence of separation, illness, and death, and then to just let it go. If I could make any choice, I would go into the future so that I could know you as a grown woman, and see the answers to your questions for myself.

In the meantime, I am astounded by you, by how you are such a…Lenny. Parents like to say that their children are a part of them. That is simply not true. Take, for example, your memory. You remember all of the things we say, all of the things you’ve seen, all of the people you’ve known. That’s just a part of you, like so many other things. We did not make you smart, or fragile, or funny. We did not make you shy around people and comfortable on a stage. We might have taught you empathy but could not teach you the appropriate times to use it. We did not make you fussy, or willful, or contrary.

We might have given you your looks, but we did not tell you how to handle them. I still laugh when I think of that birthday party we attended when you were three, after the fourth or fifth father told you how beautiful you were and you looked him right in the eye and said, “I know that. Are there cupcakes?” As you get older, I know how weary it will make you as the questions turn into propositions and the appreciative glances turn into unwanted stares.

I wish I could make a different world for you. When you ask how old you will be when this happens, or that happens, you are really asking, “Mom, what will I be like? What will the world be like?” And the answer is that the world will be the same, but you will not, because that is what happens with people who live in the world. I can remember being five, being as happy and friendly and shy as you are today. What I don’t remember is when that was lost, when I learned how to be mean, to fight with my fists, to run and not stop running. In the scheme of things I wasn’t that much older than you.

I want so desperately to protect you, even though I know I might not be there to do that. On some level you know that too. That knowledge is a burden that I gave you, but I didn’t tell you how to deal with it, because I really didn’t know how. I realize now that all I could do was deal with my burden myself, and that you would learn from me how to deal with yours.

I only wore a wig for a few weeks, and only for a few minutes a day when I walked you to school, because I didn’t want you to have to answer questions about cancer. I spent close to a thousand dollars on hair, and then spent six months just walking around bald. And that is the lesson I was teaching you, though it was hard for me to see it at first, until I learned that you were giving preschool cancer tutorials, telling everyone: “My mom is on chemo. It’s medicine for people with cancer that you get through a needle in your arm. It made her lose her hair and it can make her sick. Soon she won’t have to do it and she will feel better on radiation.”

As with many things over the last five years, I just didn’t see that one coming. That is the gift you have given me—the gift of being continuously surprised. It is difficult to find a way to thank you for that, or to repay you. So what would I give you if I could give you anything on this day? I could be trite, and tell you to be yourself, to enjoy life, to have no regrets, to find something that you love to do, to be a part of improving the world. But the truth is I just want to know that you’re there.

Perhaps that is what I am trying to pass on to you, this strange ability to be a comfort just by being. It might be a better way to walk through life than any other. Or maybe I tell myself that to make it seem acceptable that I am not the things that I am not. I am not the perfect nurturer. I have been stern, and angry, and busy, and sick, and scary. I often read the newspaper and ignore you. I am the reason we watch sports on TV, not cartoons. I leave the house a lot to exercise. I cook and clean and collapse on the couch and I rarely get down on the floor to play with you.

I want to offer to you the one thing that I can’t promise you: I want to still be there. I want to see and talk to you every day. Someone once told me that if he didn’t see me all of the time, it would make him sad, but he wouldn’t miss me, because he knew he would see me again. I will always remember how he paused before he said, but even if I didn’t, it’s enough to know that you’re out there in the world, and that you’re all right. Lenny, if I ever get to a point where that’s all I can ask for, and the last thing I know is that you and your brother are there and that you’re all right, it will be enough. Happy Birthday, honey. I love you.

--Mom

Day 921: KatyDidCancer Year in Review

Oh 2012, how quickly you've come and gone! And here I am, a young cancer survivor who feels lucky to be getting older, and I know there is so much that I should say, so many poignant statements that I could and probably should make about life and love and family and health and the nature of time.

But I'm not going to do that.

I love writing this blog, but damn, it can get deep. And I'm not really that deep, at least not most of the time. I'm the girl who likes to watch football and makes playlists about bootys and reads People magazine and steals the last swing from some kid at the park so I can use it myself.

So, I'm going to pay homage to some of the people who have helped me keep it light this year, which was easier to do than in 2011 or God help me 2010, but still a bit of a challenge on occasion.

Here's to the people who make the Internet worthwhile, those lost souls who do amazingly awesome Google searches that send them to katydidcancer, which was clearly not what they were looking for, though they chose to read it all the same.

It may be disturbing, but I will always take some kind of misplaced cancer girl pride in all the searches for "hot bald girls," "sexy bald women," "hot skinny bald chicks with scars," (whoa, that's specific!) and "hot naked body" that lead people here, though I'm not exactly sure about that last one. I've put some questionable pics on here, but nothing I would be embarrassed for my family to see. Furthermore, to all those searching for GI Jane, I know you were hoping for Demi Moore, but oops you got me instead! Holla!

And to all the pervs out there who are looking for some online pleasure but have clearly not really learned how to use the Internet, you absolutely deserve to get sent to a cancer blog! Google ain't THAT smart, so if you're searching for "16 year old breasts," "wife undressing," "nice nipples," "my first time," or Jesus Christ, "corrupting virgins," you might get better results if YOU GOT THE HELL OFF OF GOOGLE. And it kind of seems redundant to search for "naked vagina," unless you are a 10 year old boy and you don't know what else to type in, and then I feel really, really bad that you got sent to a breast cancer blog because that will be more traumatizing to you than what you were hoping to find.

And I don't even know where to begin with "breast vacuum." Yikes.

And while not necessarily "light," I love seeing the searches from people whom I assume were recently diagnosed with cancer but who do not engage in the typical, clinical searches. By far the most read post of mine is First Post Chemo Haircut, because there are literally hundreds of people, women, I assume, who go into google and type "first post chemo haircut," "haircuts after chemo" or something almost exactly like that. They are probably the more normal, run of the mill cancer survivors, right? Then there are the folks who think about things like this:

"Chemo ennui." "pole dancing fitness for breast cancer survivors." And my personal favorite: "Cancer, I'm sorry...you suck." Can I get an amen?

And I DEFINITELY need an Amen for "pimps with cancer."

Word.

To all those who were looking for useful information online, I'm glad that I could serve as a PSA of sorts. Because someone has to help those dudes who are looking up "vasectomy shave" and "shaving my balls."

A big thank you to those who remind me that I can't be that boring of a person, because if I was, no one doing the following searches would possibly be sent to a blog about my life: "son wearing sister's clothes," "me in a body cast," and the ever-so-obvious "pullups in prison."

To those with existential crises, I salute you: "How long is 642 days?" "places to go." and "I feel like I'm doing everything halfway."

Some problems are bigger than Google.

And some are too specific for the Internet Gods to handle, methinks: "my girlfriend is running away with the circus." "is kissing ungodly?"

and finally...this. This search, which actually led to a post in my other blog, one written about my wedding, of all things:

"how to O and get your brother's girlfriend to look at your penis."

Ain't a search engine on God's green earth that could help that guy.

So thank you to those who read my blogs, and thank you to those who just make me smile. After all, if no one had ever googled "live chicken on six," and then read the really deep and insightful cancer post he was sent to, I wouldn't have a second blog at all.

So here's to 2013. May we all live through it, and love through it, and laugh through it. Nothing much else we can do!

Day 915: The Ghost of Christmas Yet to Come

Our Christmases look much like the Christmases of other young families in places like Chicago at the front end of the 21st century. We bake cookies. We try our damndest to encourage our kids to believe in Santa, in magic, and we get teary-eyed when they explain, using their wonderful childlike logic, why they do believe in things that seem impossible. We attend adorable holiday performances at preschool and elementary school, even arriving extra early to get a front row seat so we can take a video of our daughter shouting out her lines in her coveted role as an elf, recording for posterity her pride in being one of only three first graders awarded a speaking part. We buy too many presents for our kids. We tell them to listen for hooves and sleighbells on the roof, and remind them that Santa won't arrive until they are asleep. We change our handwriting and choose different wrapping paper for the presents from non-magical adults. We, my husband and I, have been together almost ten years and yet we don't really know what presents to bestow on each other, so I buy him clothes, which he doesn't want but always likes, and he buys me jewelry, which is always different than what I would buy myself but looks like me all the same. We throw a big party. We drink a little too much. We bring our families, strange as they are, together. We take time off of work. We love each other.

And so it goes. Like all parents, witnessing Christmas through our children's eyes reminds us of our own years when we were caught up in the magic on the other side, happy to be on the receiving end of all the efforts that adults put into making us smile. Like all couples who have children together, but who at one point did not, we remember the holidays that we spent when we were younger and newly in love. We remember our first Christmas in our first house together. We think about the first Christmas that we had as a family, our family, the one we made, as a choice. And I at least think about my youngest child's first Christmas, which was the last one he had with parents who still believed that the world was offering our beautiful little family a long and unopened gift that just couldn't possibly end.

I spent today, and most of the last month or so, very much wrapped up in the joy and stress and reality of this Christmas, this present-day, 2012 Christmas.

And perhaps we are not that different than other couples in this, in what I am about to say. Perhaps I should not speak for my husband, who might not feel this way at all. But I have these moments, these moments of clarity both large and small, where I am reminded of the Christmases yet to come, including the ones that I will never see. It's that glimpse of the void that is part of what makes us all human, but it is something else too, something less dramatic, more practical, really.

It doesn't happen often, but I think about holidays, seasons, life events that might happen in my absence. I don't do this out of self-pity or in order to bring some kind of dramatic flair to my life, but rather because I've been put in a position to think about it.

During our holiday party, we were happy that of the 50 or so guests, our kids' best friends were able to attend. Lenny has had a best friend since age 2, and Augie since 7 months. I never believed that children that young could make such meaningful bonds until I witnessed it for myself. Those bonds have lasted through different schools and now even different towns. And as Augie's buddy was leaving, we decided to take a few pictures of them. The photos of them are usually just blurs of little boys making superhero poses...but not all of them, not this time.

When I saw this picture, with the two of them looking like pint-sized frat boys, I had to turn away and shut my eyes so that no one could see my tears. For the first time ever, I could imagine what my son would look like as an older child, a teenager, even a man. In absence of the three year old voice, the goofy mannerisms and outlandish behavior, I could see him, as he will be someday, this good looking little boy of mine.

And it brought me back to all those days in 2011, when just the sight of boys--teenagers especially, but even older children--would make me wistful with that strange, reverse nostalgia that comes from something like cancer. I used to wonder, what would it be like if he was taller than me? If he had a deep voice? If he was embarrassed to be seen with me? If he began to date girls just like me or the opposite of me?

And will I live to see any of that?

Of course, none of us knows what we will live to see. I have lived to see more in the last two and a half years than many women diagnosed with triple negative breast cancer. I have seen a lot more than a lot of people who are no longer here for one reason or another.

But I still think about it. And while it makes me wistful, and somewhat sad, to imagine the things I might miss, for the most part, the tears are not tears of sadness.

I am grateful for the strong belief that I have, that every parent has, that he will grow up, that he will become a man, that he will live a wonderful life, with or without me. It is the almost frightening power of that belief that brings the tears.

That belief is so strong that it enables us to invent magic. On some level, maybe we as parents need this Christmas type of magic to be real, so that we can convince ourselves that through some magical force, our children's lives will be beautiful and eternal, even here on Earth.

Like many parents, I gave a lot of thought to what I would tell my daughter if she asked me about certain recent events that took place in a first grade classroom.

My daughter is in first grade.

Do you hear me?

My daughter is in first grade.

She has not asked me a thing, and I don't think she knows about it. I have no intention of telling her if she doesn't ask. But I did figure out what I would tell her if she wanted to talk about it:

Think of all the adults who have protected you all of your life. You have attended daycare since you were three months old, and every adult who has ever cared for you, and every teenager for that matter, has loved you. They would all protect you, no matter what. I don't have any idea why such horrible things happen. But I want you to understand something. Do you remember when I had cancer, which is obviously a bad thing? Do you remember how easily I talked to you about it, how I told you what would happen, and how we didn't keep things from you? Do you know why I was able to do that?

Because it was happening to me, not to you. And I could take it. I could stand it.

And I know, because she's my kid, that she would understand what I was trying to say.

And I know, I just know, that they will have a million more Christmases, whether I am here or not, and the magic it takes for me to believe that is the magic that Christmas is made of, and that is good enough for me.

Here's to a wonderful Christmas that was yet to come just a few short years ago, when it was hard to see, but it happened all the same.

Like magic.

Day 907: Power and Freedom

There is one thing that every cancer survivor I know wishes for at this time of year, or any time of year. And that is to have never had cancer.

Mind you, I did not say that we wish for cancer never to return, never to metastasize, though of course we wish those things too. But the dream is to return to things as they once were, which we all know is impossible. As I said to the kindly technician who prepared me for my sentinel node biopsy and asked me "is it all right if I do this?" as she moved through the motions of the procedure:

No, it's not all right. I want to go home!

You have to laugh. What else can you do, really?

While I will hail any advancement that might help those suffering from metastatic disease, while I cross my fingers in hope that someone could figure out what triple negative breast cancer really IS, so that it could be treated adequately in the future, the various "cures" and treatments that exist today or might exist in the future give me little but pause.

I acknowledge that cancer will probably always be with us, though I think we could do a much better job at figuring out how to prevent it. But there is so much pressure on us as survivors to tough it out, to change our habits, to win, to beat the beast. I just wish that the culture of cancer wasn't so closely linked to our misplaced obsession with individual power.

I believe that we experience cancer differently in the United States, in part due to this problem.

We are a nation that is so focused on its own culture of machismo and bravado that we don't even realize it; women engage in this as well. So, we find out we have cancer, and we fight ourselves, we war, we are suddenly, horribly responsible for saving our own skins through our willingness to go to war with cancer, which happens to be something that resides in our own bodies. Therefore, we war with ourselves.

We delude ourselves into thinking that we have power over this disease, that diseases are, in fact, things that only happen to "damaged" or "weak" people. We blame the stress of everyday life more than the various chemicals that we put into our bodies, knowingly or unknowingly, every single day. We do this, and we put the onus of survival on ourselves, while the power to wield environmental or cultural decisions lies with someone else, or something else, entirely.

We delude ourselves even in the ways that we talk about handling "side effects" of cancer treatment. While I experienced a multitude of very bizarre side effects to chemo, and, more importantly, other drugs prescribed to manage the side effects everyone assumed I would have, I take issue with the notion that the harbingers of cancer treatment--specifically, toxic chemotherapy--are "side effects." The big issues that most breast cancer survivors who take chemotherapy have are these: total baldness, extreme nausea and vomiting, destruction of the ovaries and the consequent onset of menopause, neuropathy, chemobrain, anorexia, mouth sores and other lesions, extreme dryness throughout the body, paralyzing fatigue, and high risk for subsequent cancers or heart disease.

These are not side effects that we can "manage" or "hide" with other medications. These are the intended responses of the chemotherapy we are given. And yes, I mean that. What, after all, is adriamicin? That drug affectionately called the red devil or the red death--what is it? Well, honestly, I don't know. I do know that when that syringe of what appears to be red koolaid is pushed into you via IV, you literally feel the coldness of death course through your veins. I never knew what that phrase meant, until I experienced it for myself.

And what is taxol? Taxol is a derivative of yew tree bark. It is insoluble to the body, so must be dissolved in a castor oil solution, causing severe allergic reactions in a substantial minority of patients (including me). If you were in the wild, and you ate this bark, you would die.

And what is cytoxan, the third chemo that I took, you might ask? Well, it is, quite simply...a form of mustard gas. Now do you understand the neuropathy and chemobrain that some people experience?

And finally, we come to radiation. What more is there to say? People worry about the radiation in a plane ride, the radiation present in a banana. Those of us who did radiation treatment for cancer essentially lived in a Chernobyl-esque environment, one that "plumped up our breasts," because it fundamentally altered the DNA of the cells it touched.

And so we must acknowledge that the horrible "side effects" of such treatments are not really side effects at all, but expected results--these are cell-killers, after all. Some of us were unlucky, and others lucky, in the extent to which we experienced these effects and whether or not they were long-lasting. Sleep, diet, and exercise do wonders for making us feel better, but they can at times be weak forces against the powerful poison that some of us were powerless to avoid if we wanted to live.

We did not choose to do this to ourselves, and these weapons of war (literally, if you think of the comparisons between chemical weapons and chemotherapy) can leave us feeling eternally conflicted for what we have done to ourselves. I have asked myself many times, dear Lord, what have I done? Only to remind myself THAT I DID NOT DO THIS. I AM NOT AT FAULT FOR THIS.

Cancer is not alone in the way that we attempt to "empower" victims by telling them that they control their own sorry fates. We do this to other victims as well. In fact, we have tried, and mostly succeeded, to convince people that being a victim is bad, because it means you are weak and worthless. So we tell victims of sexual assault (which I would contend should just be called rape--there is no sex in rape, only violence) through our continued focus on how women, and even children, can learn to be "badasses" that they are ultimately responsible for the situation that has befallen them. We blame women for their dress, their sexual history, their decisions to be in a certain place at a certain time, rather than question those who believe they have the right to other people's bodies. We condone the culture of rape, and claim that the "power" to prevent it lies with the individual who experiences it.

In one situation that I experienced when I was very young, that I escaped before being raped but which changed me forever, I was left with this haunting thought. I knew, I just knew, that this would not have happened to me if I was a different girl, if I had just wanted to dance and drink and flirt with the boys like everyone else. I thought that this happened to me because I was the "wrong kind of girl," and someone was punishing me for it. And what kind of girl was that, you ask?

I was the only girl at the party who wanted to watch the basketball game on TV.

I have spent more than 20 years holding steadfast to that girl, because the problem was never her--not ever.

After all, what if someone is actually more powerful than you? Just by nature of being bigger, and stronger? Does that mean you are weak?

Or, that he shouldn't have used his power to commit an act of violence?

We do this, and we do not even seem to realize we are doing it. We try and convince ourselves that there is some universe in which it makes sense for kindergarten teachers, who are mostly a friendly, nonviolent sort, to carry semi-automatic weapons. We plan to teach five year olds what to do if their classroom is transformed into a warzone. We turn every individual into the one who should protect himself or herself, and we fail to focus on the collective responsibility that we all have to protect one another. We avoid policies that could bring about real, meaningful change, because we have created a culture where everyone is out for himself.

So it is with cancer. I contend that it is not for me to be brave, or beautiful, or strong. It is for us as a society to try to make strides towards eradicating a disease that will afflict fully 50% of the population before death. It is for us as a society to hold each other up in times of sickness, to allow ourselves to accept some level of weakness and to let others help us.

Every time we personalize a social issue, we move away from any useful solution. We take large, complex problems, and concoct for them fantastical, even juvenile, solutions. Perhaps I am a superhuman, capable of protecting myself and my family from every possible scourge: famine, illness, violence, poverty.

Or, perhaps I am not. Perhaps none of us are. Perhaps true power, true freedom even, lies in the ability to not have to fight, to live out the promise of our lives unscathed because we have ensured a civil society that embraces a real sense of community and collective mores.

If there is one thing that has made me feel free in this life, that has made me feel powerful, it has been the ability to walk away. To walk away from my own convulsions, to walk when I once could not, to run from people who intended to hurt me, to sacrifice worldly possessions in exchange for a safe ride home, to live for two years without poisoning myself, to walk, or run, or crawl, back into the normalcy and complacency of my life. I might be doomed to a life inside this getaway car, always looking over my shoulder, but I am not the one who committed the crime.

If we must be "empowered," we have already lost half the battle. Would that we would not need such power in the first place.

Day 890: Magical Thinking

A few days ago, I wrote a post about my strong belief that Gilda's Club should not change its name. I decided not to make that a KatyDidCancer post, because to me, it was broader than that. When Radner spoke of "Delicious Ambiguity," she admitted that she had wanted to continue to believe in "magical thinking," even through her cancer diagnosis, but at some point she just couldn't anymore.

Doesn't that happen to all of us at some point? Of course it does. Part of what makes childhood unique is the strong power of magical thinking. Make-believe games, imaginary friends, playing more with the box than the toy inside it, and the ways that children continuously remake themselves, are all ways that kids learn to navigate the world.

I think this is really important. My kids go or did go to Montessori school for early childhood education, but I don't believe in the Montessori philosophy that says that children should only play "real" games, lest they not be able to tell the difference between fantasy and reality. I don't believe in this because here I am, 37 years old, and I want someone to tell me:

What the hell is the difference between fantasy and reality?

Truth is often stranger than fiction. Take it from me. I've learned that the hard way.

Around this time of year, there are millions of parents who navigate ways to try to keep the idea and the magic of Christmas alive for their kids. We aren't religious here, but we are serious about our Santa. The kids even believe in Santa Mouse--he stuffs the stockings and you have to leave him cheese. Trust me, it's a book--and a classic one, at that.

Augie is three and a half and believes in Santa whole-heartedly. I've wondered about Lenny, though. Last year on Christmas eve, we showed her the Norad tracker online. Santa was in Estonia, on his way to Helsinki. I told Lenny how long the tracker said it would take him to get from the one to the other, and then asked her when Santa should arrive in Chicago. Lenny is a geography nerd. There she was, 5 years old, and she knew all about Estonia and Helsinki. Then, she put her fingers on the computer, did a little calculation in her mind, included the time zone change, and guessed to within 45 minutes of the tracker's estimate.

How can a kid like that believe in Santa? Her logical mind is telling her one thing, but her magical thinking heart was telling her another.

So you know we really screwed up when the tooth fairy skipped over this house on Lenny's third lost tooth. We had to make up a whole story about the weather being the reason she couldn't make it. I know she wanted to believe us. And I know that she didn't, but she played along anyway.

I played along too, most of my childhood. I tried to pray, came to the conclusion I was talking to myself. I listened for hooves on the roof on December 24 for as long as I could, until I fell asleep. I ignored my parents' handwriting on all the notes from various magical beings. I cried when my brother told me there was no Santa, even though I knew that already.

Having children proves to you that there are very few differences between being a child and being an adult. Even children wish they could believe in things that seem impossible. As an adult, you take great joy in the magic. I swear my mom was still playing Santa when I was 20. We tried to keep the magic in the season even when the season proved to be ridiculous, like the last year we had a real Christmas tree, when I was maybe 17 and my brother 20. We bought the tree, they wrapped it in that stuff, put it on the car. My mom drove us back to the house we grew up in, which would sell to another family the next year when my mom moved into a three room apartment, and the whole drive we wondered what that strange chirping sound was. We got home to find a bird had been dying in the wrapping the whole time.

My brother had to vacuum the dead bird out of the tree. The next year, we bought a small fake tree, and that is the tree that stands in my house to this day.

Oh, how life steps in, even when the visions of sugarplums are dancing.

But the mind, or maybe it's the heart, is stronger than reality sometimes. I don't think that changes with adulthood--it just shifts. It is that heart, that mind over matter, that allows us to keep plugging along, laughing, loving, working, while death sits tapping at our shoulders.

Having children just makes this clearer.

Yesterday, Lenny pulled Gabe aside and whispered in his ear. There's really nothing for me to add to this.

Daddy, I want to tell you something. I just realized that I can believe in things that I can't see. Last year, I thought that Santa Claus was just someone in our family who left presents under the tree when everyone else was asleep. But now I realize that's not true.

Because who would want to stay up until midnight?

Day 850: What We Keep Inside

The other day, my daughter told me that she had a surprise for me from school. I assumed she had made me something in art class or that she wanted to show me a spelling test. Instead, she handed me a small pink bag with a pink ribbon pin and a small card inside of it. I asked her where that came from, and she told me her teacher gave it to her. I didn't get into it at the time, because she didn't seem like she wanted to elaborate. Today, after Gabe and I returned from a wonderful night away in Union Pier, Michigan, the following conversation ensued:

K: How did your teacher know I had cancer?
L: Because I told her.
K: Why did you tell her?
L: We watched a video about kids and adults who had cancer.
K: Wow. What did you think about kids having cancer?
L: (Shrugs). I don't know. I hadn't thought about that before the video.
K: Well it doesn't happen very often.So did your teacher ask you if you knew anyone with cancer?
L: No. When we were watching the video I was thinking about you.
K: OK, so then you told her?
L: I told her the next day. She gave me the surprise because she said she had bought presents for people in case there was anyone who had a family member with cancer.
K: That was very nice of her. Do you remember when you found out I had cancer?
L: No.
K: You don't remember anything about it?
L: I remember when you had surgery the first time. Meemaw stayed with us at our old house.
K: Were you worried about it?
L: Yes.
K: Why?
L: I didn't know what it would be like.
K: What what would be like? The surgery?
L: The whole thing.
K: Did it bother you?
L: No.
K: Nothing ever bothered you?
L: I remember when you didn't have hair. That bothered me. I liked it better when you had hair. It looks better.
K: Do you remember anything else?
L: I remember that we ordered food or other people cooked food for us a lot.
K: Right. Were you worried?
L: No.
K: I just ask because a lot of kids worry when their parent has cancer. Do you ever think about it?
L: No, I never think about it.
K: OK. So...do you not like to talk about it?
L: I don't want to talk about it.
K: Fine. Time for dinner!

Oh, how they fib, how they hide their feelings from us in order to spare us, even at six years old. I know very well that Lenny remembers almost everything about the entire ordeal of my breast cancer. She brings up random memories all the time. She still sometimes uses cancer as a measure to remember when things happened: Oh, that happened before we knew you had cancer. That happened when you were bald. We didn't go to that party that time because you had cancer.

She was the four year old who at day 25 of radiation said this to me: "Mom! Only eight left!" Because she had been counting down backwards from 33 and she had never told us that. She even correctly removed the weekend dates from the equation.

Lenny refuses to cut her hair these days and I know why. She asks me all the time when I will grow my hair out. She tries to console Augie when he gets fixated on death by bringing up my cancer, and using it as an example for how bad things can happen that don't always kill you. She will even qualify those statements with things like "well at least not right away," no matter that we have NEVER discussed cancer returning with her.

Obviously she thinks about it. She waited a day after the video, cornered the teacher when she was alone, and told her about it. Obviously she worried. She cried, she was angry with me, she gave all of the kids at preschool tutorials about chemo. She talks about "the first surgery," knowing very well that there was a second one.

Lenny remembers everything. It's one of the things that makes her Lenny.

I have noticed since she has started first grade that she keeps things from us. She gets a bloody nose, is sent to the principal's office until it stops, and I find out about it from another kid's mom. Boys call her names or give her noogies and I find these things out eventually, but not right away. When she does tell me these things, she is honest about whether or not they bother her. But the rest is just a cloud of omitted information, the kind that she used to provide without being asked, in full detail. This is a part of growing up, and it doesn't bother me, considering how I swear to God I never told anybody anything that had much import--not my mom, not my closest friends--when I was small.

I remember that feeling, that desire to shield the world from the things that I knew were problems, in order to spare them the notion that my life was not so innocent after all. I knew that I was a child, and that children weren't supposed to think about such things or have anything bad happen to them that they would then think about, and I wanted to protect adults around me from the knowledge that that wasn't true. And now I have this child who has always hated conflict--ALWAYS--even when she was just a tiny kid. She gets scared at the most basic animated movies, not during the scary parts, but when people or animals do something that would get them in trouble. She's been this way since she was less than a year old--the thought of negative consequences must just hang over her like a cloud. It's funny, because no one ever got in trouble in our house until Augie was about two years old. I don't know where that came from, that extreme conflict-avoidance--but I do know that she uses it still.

I ask her these questions in a seemingly offhand way and she knows it's not offhand, that this is some serious shit. So she shrugs, feigns amnesia, tells me it's nothing.

That's ok. Lenny is fine, she has handled everything very well, and she will continue to tell people things about it when she needs to, as she did last week. She's little. She's my kid. I have no idea what else to tell her about it outside of what I told her in front of 300 other people that one day in May.(If you want to see the video--here it is!) This whole thing has made me realize that I really need to revisit my Cancer Mentors idea. If a four year old, or a six year old, can hide things so well, Lord knows what teenagers are thinking.

When it's a kid in your own family, you can only hope that she talks to you when she needs to, that you have made it clear that it's ok, and that some other adult with a little bit of distance has the wherewithal to bring it up. And then you can let it go, and not say what you wanted to say when she told you about that cancer video, because you know the sentiment would make her squirm:

Oh honey, I was thinking about you too. No matter where I am. No matter what.

Day 865: I Remember This

For the second time, a guest post from Martha Jacob! This is in response to the post I wrote yesterday called Guilt.

I remember this:

a little girl (you) who for her seventh Christmas wanted a knock-off Cabbage Patch doll.

a mom (me) who was so excited. Now we (you and I) could play house, dress the baby, feed the baby, put the baby to bed. I got out my doll crib and high chair from my childhood. Fixed them up for the doll you had already named (Sarah Winnemucca Marthagene Jacob), the doll I imagined would be “our” baby.

the Christmas morning when you unwrapped Sarah and her wardrobe (picked out by a Santa mom who couldn’t wait to help you dress her). You were so happy. So was I. Now, I said, you (we) can play house. You can dress Sarah. Feed Sarah. Put Sarah to bed.

the little girl (you) who looked at her stay-at-home mom (me) and said with an incredulous look Mommy, what are you talking about? Sarah is six. She is going to school. I am going to work. I am not going to play house.

wondering, hmmm, let’s see. Your role model (I thought) was me. I’m a stay at home mom, I thought. Most of the mothers in this neighborhood are stay at home moms. You never watch tv (you never sat still long enough). The only mom you know who works is….Grandma Marthagene. Hmmm…. and you loved Grandma Marthagene to death and you went to visit her at work and, hmmmm.

a mom (me) who dressed Sarah Winnemucca Marthagene and fed Sarah Winnemucca Marthagene. She did sleep with you, but stuffed animals slept in her crib. You never played house. She went to restaurants with us, but you never played house. She went everywhere with you, but you never played house.

thinking Oh she’s missing so much.

But of course, you weren’t. You were who you are.

I also remember this:

a young mom from down the street who came to my house crying one evening when I was trying to make dinner. We sat on the porch swing. Dinner could wait. She was, after all, crying.

that new young mom saying How do you do it? How can you be happy being a stay at home mom? You always seem so happy. I hate it. I can’t do this. I love my son, but I can’t stand staying at home.

listening to her go on for awhile and then saying Then why are you staying home?

her incredulous look when she said Isn’t that what I’m supposed to do?

saying No, you’re supposed to do what makes you happy because that’s what will make your baby happy. Unhappy moms make unhappy babies.

her saying But I’ll feel guilty.

my saying But you shouldn’t. You will be doing the best thing you can for both of you and your son will love you as much as if you stayed home. You’re his mother. No one else is that.

my saying Look sometimes I feel so selfish. I always wanted to play house. I get to play real house now. We would have more money if I worked, be better off probably, but this is ALWAYS what I wanted to do. I get to dress dolls and feed dolls and put dolls to bed. Real dolls. But I also get to do whatever else I want. It so happens I like housework, but if I want to do some project around the house (and I always wanted to do some project around the house), I do. I should probably feel guilty because I have this freedom (I didn’t). It isn’t freedom to you, it’s jail.

my saying Get out of jail and be happy.

her saying Thank you, but I just don’t know what I should do.

my dinner being late that night. My thinking I hope she goes back to work. And, as I found out soon, indeed, she took my advice and went back to work.

that young mom coming over weeks later and saying Thank you. I’m so much happier. And sometimes I feel guilty. But mostly I feel ok. I love to work. I’m so much happier. And she was and she never came crying at dinnertime again.

Both are true stories.

You were, apparently, always going to work outside of the home. You are who you were.

No one asks a dad if he feels guilty not being home with his kids. No one blames a dad if he doesn’t stay home with his kids – or take paternity leave or watch football at night and ignore the kids or whatever other stereotypes there are about dads out there.

I remember this:

a tiny little girl (Lenny) who pined so terribly (broke my heart) when I stayed with her for a weekend while you and Gabe went to California. She stared at your pictures, couldn’t go through the picture album that Gabe had made about her first year enough. She stared up at airplanes in the sky when we went for walks. Mommy and Daddy took an airplane like that to California I told her. And they’ll take another one home to you very soon I would say every time.

thinking She must think I’m out of my mind. She was what one and a half? Mommy and Daddy are in that tiny little thing? How, she must have thought, can that be? But still every time we went outside, she looked up for that airplane and Mommy and Daddy.

a tiny little girl running into your arms (first) when you got home saying Mommy Mommy!

you, a working mom, having a little girl who loved you so much.

The debate is worthless. Children who are loved love their parents and want their parents to be happy too.

Guilt is fruitless. For whatever it is spent on, it is lost on. It is fruitless.

and any kind of guilt about anything for anyone who has cancer is more than fruitless. However you or anyone gets through it is no one’s business but your own. If one out of three or four of us will one day have to deal with cancer in our own way, then we will deal with it in our own way.

I wouldn’t have you any other way. Lenny and Augie wouldn’t have you any other way. You wouldn’t have had me any other way. However we did it or are doing it now, it works.

I could feel guilty because I don’t help out with the grandkids that much or quit work so I can help out when times are tough (and boy have they been tough in the last few years).

But, hell. I always did hate to babysit when I was a kid. Loved being that stay at home mom – but the operative words were stay at MY home mom. Doing what I wanted.

I will always be there when you need me, but my days of playing house are pretty much over (although I do still love housework). I didn’t go back for a Ph.D. for nothing. By the time I quit work you won’t need the kind of help you need now that the kids are small.

Oh well.

I bet you love me as much as before. I bet Lenny and Augie love me as much as they always have. Don’t have any doubt about either.

And, you know what? No guilt.

Love,
Mom

Day 864: Guilt

This has been a weekend of babies for me. I went to a party today to meet a high school friend's newborn baby girl; afterwards I met up with another high school friend who had recently had her first baby. Last night, I went to see an independent film, Be Good, which was about what happens to people when babies rock their worlds upside down. I held these tiny little girls and realized how long it had been since my kids were that small; Lenny was so tiny for so long, and somehow, still, you forget. I sat through the film, which I enjoyed quite a bit, and saw everyone nodding their heads in understanding as the new mother dreads leaving her baby and going back to work.

And I began to realize something. So often, women talk about how guilty they feel as parents. Guilty that they don't spend enough quality time with their kids, guilty for working, guilty for staying home, guilty for having someone else watch the kids, guilty for carving out time for themselves.

I have never felt like that.

I struggled quite a bit when I went back to work when Lenny wasn't even three months old. I had to do it--Gabe was self employed, my income was steady, and I held the health insurance. Also, I wanted to work--just not that early in her life. It's absolutely ridiculous that we as a society think a 12 week old baby is old enough to be left with anyone but the basic food source, but, hey, that's America. I worried about her because she took so damn long to drink a bottle and I knew they wouldn't spend that much time with her. How could they? I was right--she was always so hungry when she got home. I remember kissing her before I left for the office and feeling a pang--but it wasn't guilt.

I knew I would be overwhelmed, and tired, and way too busy and I knew I would have to travel soon and the whole thing was really stressful.

But it wasn't guilt. I didn't feel guilty when I went back to work when Augie was six months old. I didn't feel guilty that I earned no income at all for four and a half of the months I was home with him, either. I didn't feel guilty that Gabe might have been one of the only dads alive to use a month of paternity leave to watch his baby by himself so the kid wouldn't have to start daycare until after New Year's.

But no guilt. I think it's the wrong word. Babies at that age don't need you. Now, they need SOMEONE. They need love, and nurturing, and they need to be fed and cared for and they need to learn how to be people in the world. But they don't need YOU. When I went back to work, Lenny was so little that she never knew any different, and Augie was a little pissed, but not nearly as angry as he would be a few short months later when his mom would stop nursing him all of a sudden. I liked working. I didn't really want to be home all day. I would have liked a few days a week at home--but not every day. Why should I feel guilty about that?

As a parent, I just don't feel like I have time for guilt. Growing up, my mom was home until I was about 11. And yet--I don't think she ever played with us, not really. She fed us, and talked to us. She colored with us when it rained. She sang to us on our front porch swing. But we played by ourselves or with our friends, and she did her own thing. I never resented that--that's just how it was.

So it's hard for me sometimes, when I hear other moms talk about how crucial it is to spend as much time actively engaged with your kids as you can, when I realize that Gabe is the one the kids play with, when I get confused when people tell me that everything changes when you have kids. I feel like I am supposed to feel guilty about not feeling guilty.

I didn't change when I had kids--not really. My life changed, sure. But me? I still read the newspaper in the morning and ignore everyone. I still yell at them to get out of the way when the game's on. I don't allow them in the kitchen when I'm cooking. I give them that mom look that I perfected years before I ever had kids (an ex boyfriend used to tell me he could feel me giving him that look through the phone) when they dare to come into our bedroom unannounced. I go on walks by myself because they're too slow to go with me. I spend a lot of time writing blog posts. I have never used baby talk--not ever, not even with other people's kids. I just talk to them--like they are normal, albeit small. I used to get so bored when I was home alone with the kids when they were babies, because I'm not used to sitting still. And then I realized, I don't have to sit still. I'll just get the stroller, make them walk with me. Walk around them and do what I need to do while they play on the floor.

Now, don't get me wrong. I got down on the floor with my kids and kissed their bellies and all of that. Just not for long. And I like holding other people's babies--or at least I like holding the babies of people I like. I'm no huge baby-lover, no overdeveloped maternal instinct here. But I love my kids. And maybe more importantly, I like them.

I just figured they would like me too. No matter how I was--because I'm their mom.

I could have felt guilty, but at some level I knew it wouldn't do any good. And now here they are--these kids who play games like "office" and "spinning" and pretend to make coffee or just otherwise do things that mimic me. Or, even better--they ACTUALLY do things that I do. Lenny reads the weather page every morning. She understands football. She knows how to flex her biceps. Both of my kids know how to make coffee. Augie likes to wear nail polish.

You know, every time I hear friends complain that their husband just comes home from work and plops down on the couch and turns the game on, I want to say (besides, um, that's what I do...), you know, someday your kids will look back fondly on those days their dad would watch the game from his special chair. They will remember the chair, and what brand of beer he drank, and they will remember trying to get his attention and being playfully batted away, and you know what? Those memories are just love in disguise.

But I still live with this secret--this guilt that never was, this thing that sets me apart from all other young mothers in my situation.

I never, not for one day, felt guilty that I had cancer.

I felt many things: terror, grief, anxiety, depression, confusion, anger. But not guilt.

There is some unwritten rule that if you have cancer as a young mother, you are supposed to do everything after diagnosis "for your children." You are supposed to stay alive for them, go through chemo for them, protect their feelings above and beyond your own.

But I didn't.

I wanted to live for myself. I did chemo because I had to if I wanted to be able to say that I did what I could to fight the triple negative beast. I wore a wig for a few weeks to walk Lenny to school because I didn't want her to answer questions--ABOUT ME. I didn't want to be the subject of that conversation. Once I stopped caring, I didn't ask her how she felt. I was telling her, look honey. I'm sure you don't like having a bald mom. But I don't like being bald either. We don't always get what we want. You'll get over it.

Of course I got lost in my own sadness when I thought of not seeing them grow up, when I wondered if they would ever remember me. BUT THAT IS NOT GUILT. In some ways, that is selfishness. I wanted to see those things, I didn't want to miss out, I loved them so dearly and desperately. It broke my heart to wean Augie so violently.

But it didn't make me feel guilty.

I think I've just broken about 10 breast cancer taboos by admitting this. We breast cancer survivors are supposed to be martyrs in a sense, living just to show others how to be strong or brave or "beautiful anyway" or some other shit. But all we want is what everyone wants, and that's more time to be ourselves in the world. And if I was a hardass mom before, well, I'm sure as hell still going to be one. I had my moments of crawling into bed with Lenny to feel her little body next to mine, when I was in my darkest place and I wondered if I would die. But I didn't do that out of guilt.

I remember how guilty I felt over not feeling guilty. I asked my mom if there was something wrong with me, to feel the way I did, to feel like I wanted to avoid my kids because it was too painful to be around them at the beginning, when I was supposed to be hugging them 24 hours a day. And, as all good mothers do, she told me a story. I will not do it justice--she would have to tell it to you herself. I suggest you ask her if you ever get the chance--it's really pretty fascinating.

She reminded me of something that happened when I was four years old, the same age as Lenny was at my diagnosis. My mom was 29, and she decided to have a hysterectomy. She had had issues for years, had been anemic her entire adult life, and she was happy to have the operation. My dad had a vasectomy years before that, so there was no question of wanting more kids. She went in to the hospital, and told us she would be home in a few days.

My mother bled to death from that operation.

She hemorraghed internally following the procedure. She realized she was dying--she saw the white light, talked to the ancestors from hundreds of years ago, was happy to go. Then, she thought of us, and wondered what would happen to us, so she screamed.

Nurses came in, and told her she would be fine. Her doctor, a man that many women in that feminist era didn't like because he called women honey and things like that, came in and asked what the hell is wrong with that girl? Nothing, doctor, she's just scared. Yes, something is wrong with her or she wouldn't be screaming.

And she flatlined, and he stripped the veins from her legs and sewed them into her stomach, induced a coma, and saved her life.

She was in the hospital a long time. Even once she got home, she was bedridden for months. My grandmother took a train 65 miles to come live with us so my dad could work. She cooked our meals, bathed us, walked me to preschool through the blizzard of '79. I took naps with my mom, but otherwise, I rarely saw her or talked to her. I knew she was there--but it was so different.

Finally, she got up and about. I threw something at her, angry for all the time she was "away." And she told me, enough of that. Mom's back.

She stopped telling this story long enough for me to ask if she felt guilty during those months. She told me that she never felt guilty, because she had to do what she needed to do to get better and live and be there for us, and to be able to be herself. She told me something along the lines of a phrase I learned from another cancer survivor 40 years my senior: You are the most important person in your house right now.

And that's unfair. But life is unfair. The kids will get over it. Gabe will get over it. I told myself that as I walked away from everyone on chemo days, went right upstairs, got sick, took to bed. I told myself that as I got skinnier, as I fought with doctors, as I telecommuted when I hadn't slept for five minutes in five nights. I told myself: Don't feel guilty. You need to do what you need to do to get through this in order for anyone to get over it. You don't have time to feel guilty.

I must have been remembering this story one day at the tail end of chemo when I made the decision to tell all of the people who had generously made food for us for four months that I was ready to cook for my family again. I went into the kitchen and started to get dinner ready. I was bald, and I had no eyebrows. I was in menopause and I had hot flashes every five minutes--literally. It just got worse with the oven on. I had scars all over my left side and soon I would have radiation burns as well. Lenny came in and asked me what we were having for dinner. Lasagna again?

No, I said. I haven't decided yet.

She looked at me strangely--almost suspiciously. She pouted and said, well, I don't care. I'm not hungry anyway.

I told her not to talk to me that way. I asked her why there were rugrats in my kitchen. I said:

Mom's Back.

And she continued to pout, but I saw that glimmer in her eye. I saw her skip into the next room.

There was never any need to feel guilty, because you know what?

I'd never left.

(For those who don't know--I have started a second blog, in order to give myself permission to write about the random things in life rather than the cancer things. You can now also find me at LiveChickenOnSix.)