Tuesday, February 26, 2013

Day 978: We Saw Your Boobs

I didn't watch the Oscars, but I heard about this song. I just watched the clip. Now, I laughed my ass off during the hotel room fight scene in Ted, but Seth MacFarlane is just a dumbass for this one. So, next time, I say they hire me to host the Oscars. Because if rape is funny (aw yeah, we got to see Jodie Foster's boobs in The Accused! When she was being gang raped in a bar--hilarious!), so is cancer. Any of my BC sisters willing to do a montage for this? You know I'd do it.

We Saw Your Boobs (Breast Cancer Version)

By Katy Jacob

In the radiology suite, we saw your boobs! (smoosh, yank, ow!)
Something wasn’t right, so we kept compression tight
And sent the doctor in to give the news!
With a seven inch long needle we jabbed your boobs!
You cried because you always liked them,
Never really planned to fight them,
But oh well, then in surgery we saw your boobs! Wait, boob!
Uh oh it looks like that one has no more boobs.
In the nursery your baby saw your boobs!
You could no longer feed him with those boobs.
Your friends looked away, your man promised to stay,
Everyone says you’re more than just your boobs!
In plastic surgery we saw your boobs!
We couldn’t give you nipples, the numbness is but a ripple
Cause now you’ve got bigger better (kinda) boobs!
Now time is running short, but at least we can see your port,
The burns, tattoos and scars across your boobs.
They’re lopsided or they’re gone,
There’s something really really wrong,
In this new world with death hidden in your boobs.

Sunday, February 24, 2013

Day 976: Walk with Me

I'm not a huge fan of breast cancer events. I know that might be a controversial position, but, well, that suits me, right? I do, however, participate in one walk every year; I captain a KatyDid Cancer team, in fact. There's a Beverly Breast Cancer Walk on Mother's Day that benefits the local hospital where I did radiation (and where I received free massages, acupuncture and even pedicures during treatment). I still feel conflicted even about this walk. There's a lot of talk about the tatas, saving second base, signs and team names that are well-meaning but still seem to make light of a complicated, disfiguring, traumatizing and deadly disease. There are too many memorials, too much pink. But there are also thousands of people in my community who participate, and if they didn't know about me before, they find out as they walk past my lawn and see a photograph of me on a sign depicting me as a cancer survivor, and they see a placard with my name on it. I might not look like cancer girl anymore, but that's one of the faces that people know of me over here on the south side, and, well, they seem to love me anyway.

At least in this case, I know where the money is going, and I am fairly certain of the goal, which is much more specific than finding an elusive "cure." There is nothing wrong with the legion of "cure" walks. I am just not at a place where I want to dedicate my time to them, unless there is a specific focus on research that is tangible. One of the things that I remind myself of continuously is how comparatively lucky I was in being able to access quality care in a simple and affordable manner after being diagnosed with a rare and aggressive form of breast cancer. I could walk to one of the best research hospitals in the country from my office, so it wasn't hard to get to chemo. I lucked into being assigned one of the best breast surgeons out there. I chose to do radiation at the closest hospital to my house, because going elsewhere every day would have been extremely frustrating and would've been like a second commute. The south side of Chicago is not replete with the same health care services as, say, the north side, and yet the small hospital where I burned myself every day was actually wonderful, and the cancer center there is pretty damn legit. I have heard of people having to travel hours, days even, to receive cancer treatment. People go into debt, have to take extended leaves from work, are forced to stay away from their families for long periods of time--all just to receive the treatment they need to stay alive.

So, I'm glad I live in a place where quality care was available, and I'm damn glad I had good health insurance.

I participated in my first Beverly Breast Cancer walk just days after being diagnosed with triple negative breast cancer. I didn't know I had cancer when I signed my family up to walk. I don't remember much about that day. Mother's Day will forever be a difficult time for me, as it falls right around my Cancerversary, and because in addition to being celebrated for being a mom, I find myself being celebrated by thousands of people who walk past my house in support of people like me. And I am reminded of other less "pink" things as well, such as the fact that cancer forced us to cap our family, and that each Mother's Day I spend is one that I didn't know I would have three years ago. And I no longer plan three years into the future.

I do, however, plan three months into the future. If you live in the area, please consider joining me on Mother's Day at the Beverly Breast Cancer walk. Register here and choose register now, join a team, join existing team, and look for KatyDid Cancer. If you walk with us, you can come to the party I'll host at my house afterwards. There will be a shitload of food and even booze at 10 in the morning. You can also donate to my team or provide a general donation. This girl--yeah, this one--is but one image of the many people who need access to quality cancer treatment.

KatyDid right? Katy DID. That's what we tell ourselves over here.

Thursday, February 14, 2013

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.

Tuesday, February 12, 2013

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...


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.


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.

Monday, February 4, 2013

Day 956: World Cancer Day

Today is World Cancer Day. I'm not entirely sure what that means for someone like me, except that it gives me an excuse to write something here finally, and I haven't felt like doing that for a while. According to the World Cancer Day website, part of the purpose of this day of awareness is to dispel myths about cancer. I feel like I've done a pretty good job of that over the years, as evidenced by the high level of discomfort that some have felt when reading these posts. However, I am intrigued by the four myths that have specifically been laid out for dispelling today:

Myth 1: Cancer is just a health issue
Myth 2: Cancer is a disease of the wealthy, elderly, and developed countries
Myth 3: Cancer is a death sentence
Myth 4: Cancer is my fate

I'd like to put a few quick words to the final three myths, and focus most of this post on the first one.

So, for myth #2, I would say that I never knew that cancer was considered to be a rich person's disease; I guess perhaps poor people, or those lacking health care, just don't live long enough with cancer to make it into the news? And clearly I am living proof that it is not a disease of the elderly. As for the developed countries part, there are so many issues that feed into such myths that I would rather focus on those than the myth itself: cancer rates and mortality statistics are directly skewed by screening techniques, available medication, and such things as the existence of hospitals and health records.

Now let me speak to myth #3: God, I hope not. But to everyone who has ever been told the words "you have cancer," it sure as hell feels like one. Even if you manage to beat some of the odds and live a very long life, you will always be a person who had cancer and survived, and that is different than being a person who never had cancer at all.

As for myth #4, I don't really know what to say. Cancer is my fate, in the sense that I had cancer, and I believe that fate is what happens. I hope this myth doesn't imply that I could have prevented cancer, by somehow being thinner or more active or happier or more awesome. Perhaps this is just to say that cancer isn't all of you, it doesn't define you, but that seems obvious to me. It's interesting to ponder the fact that people who are blessed with things often define themselves in part by those things, yet people who do not have things do not define themselves by their absence. Let's say you are healthy, or extremely fit--you take credit for it and call it a "lifestyle." Let's say you have money--you assume you deserve it, that you earned it. Let's say you are in love--you might feel that that relationship makes you special, carves a space for you in the world. But if none of those things or similar things are true, you are still yourself and still probably happy and most definitely not blaming yourself for it and crying in your beer.

That brings me to myth #1. Cancer is definitely not just a health issue. It's a community issue, a social issue, a political issue, a sexual issue, a friends and family issue, a workplace issue, an identity issue, an it's between you and your concept of God issue. Cancer is about money and power, gender and race, shit--it's about death and taxes and everything else. But cancer is not alone in this. The concept of the "new normal," which I feel was the subject of almost every single one of my 2012 posts whether I realized it or not, has been coined for cancer survivors, but we do not own it.

I have been uninterested in writing lately because I have been feeling very verklempt. (As an aside, I am so grateful for that word. Perfection personified!) I have been feeling as I did when I was a senior in high school, when so many things seemed behind me as well as in front of me and yet I couldn't see how to let the old ones go or move on into the waiting world. I felt like I was literally crawling out of my skin, and my angst was not a teen angst, but one based in a real and adult understanding of the hardness of the world. So many difficult things happened that year, and I wanted to get away from everything, but I didn't think I would be able to do that. So I would shake in my manic little body and when I couldn't take it anymore I would just leave--just walk the hell out of school, or get in my mom's car and drive somewhere and sit by myself in the dark.

And I feel like that now--but where can I go? I have clawed my way into the life that I wanted to have 20 years ago, no matter how imperfect it's been, and I don't want to leave it. I want more time to stay in it, in fact.

So what is responsible for this feeling that I have today and many other days? I started thinking about this when I went to see Gangster Squad with a few girlfriends, and in the middle of that almost humorously violent movie, I learned something about myself. The main character, a war veteran, talks about how he doesn't know how to do anything but fight, and he can't figure out how to be a normal person.

And I thought to myself, huh, me too.

A lot of people feel this way after going through cancer treatment. You are so focused on fighting the beast, and then you kind of "make it" but you don't know if that means anything, and now you are supposed to pretend like nothing ever happened and it's really hard. But for me, it's even more complex. I found out I had cancer when I was ALREADY deep into a focus on my own body--because I had spent the previous 20 months carrying and nursing a baby. Men cannot understand the extent to which you dedicate your body to your unborn child--not out of love or maternal instinct, but because you have no choice. Those babies are parasites. They are beautiful, but your body becomes a vessel for the sake of them whether you like it or not. Having a healthy baby becomes the paramount issue in your life. And then, if you nurse, so much of your daily routine revolves around feeding your baby that you don't even realize how your body parts and what they can do can define you and constitute work. And then of course there's everything else--the epilepsy, the near fatal car accident, the other medical issues that might seem relevant to someone else but aren't even worth mentioning for me. There's the people I've had to physically fight, the circumstances I've fought, the arguments I didn't know how to stop out of stubbornness or apathy or hell who knows what. I even picked a fighting career; I built my resume based on the idea that a few people could fight enormous institutions and social forces and somehow be successful. I've defined my life since age 6 as one that involved defying expectations and not backing down.

So what now?

What do I do now?

I'm not ashamed to admit that I have absolutely no idea. I feel a little bit lost sometimes. I have such a hard time with the small bullshit of life. I have a hard time dealing with false drama or fire drills or other nonsense. I am probably hard to be around because I think there's so much nonsense and bullshit and people think I don't care about them which isn't true. Now, let me be clear--I am not ACTUALLY unable to deal with any of these things. I am coping just fine and I know how to do and say the right things and play in the sandbox with the other kids. But on the inside, I just feel completely set apart from the things that most people care about, even my closest people. I have vivid dreams about eating. I think about exercising or sex hours in advance, planning what I will do and how I will do it. I hate being at work when there's snow outside because I could be playing in it. I walk for long periods of time by myself and if I don't I get jumpy. I look forward to my nightcap. I wish I could hold on to the moment right before falling asleep forever. One of my favorite ways to bond with my kids is to cook for them or play vaguely inappropriate music too loud so I can watch them dance.

Everything I think about life is about the body. I spend large chunks of time focused on the most basic aspects of being a live human being: walking, eating, seeing muscles move, forcing myself into a new breathing pattern, lovemaking, sleeping, and, incredibly, waking up.

But we don't live in a physical world. We live in a fairly virtual world. I have a thinking job. There's not a lot of manual labor that middle class people in the first world actually have to do. It's not even necessary to connect with people in the flesh. We talk about bodies as if they are commodities--we give them names and talk about how to get new ones and all the time I'm thinking THIS! This body that still works!

And I feel like a fish out of water, all the time. That's in part because of cancer. Cancer isolated me in the same way that it does other people--I lost some friends, people changed their interactions with me. It also brought me closer to other people, and gave me a voice, I suppose. Or at least it gave me a platform for the voice I already had. It brought me into another new normal and gave me survivor's guilt. But that feeling of separateness is not due to cancer alone.

I don't know how to change 30 years of fighting. I don't know how to be different. Maybe it's more than 30 years, maybe this isn't about experience at all but rather personality. Maybe the year old baby who somehow picked the lock on her dad's briefcase when she thought no one was looking was just destined to be this person going through life with her dukes up--I don't know. I really, really don't.

So I continue to do weird things. A short while ago, we had this crazy 70 degree day in late January. We were all warned that change was coming with a huge thunderstorm and precipitous drop in temperatures. That evening after work I decided to take a walk. I didn't take an umbrella. Gabe went to get the kids. It was drizzling the whole time I was walking, and then it started raining more seriously. I stopped into a deli to pick up some sandwiches for dinner and when I left, all hell had broken loose. I was soaked to the skin within half a block. It started to hail. People were running for cover. And I just kept walking, laughing. The bag of sandwiches was drenched. I could barely see through the rain. Later, I would have to literally peel my clothes off. There were enormous bolts of lightning and I could have called Gabe for a ride but I didn't.

When I got home, I asked if anyone wanted to put their rainboots on and go jump in puddles with me. The kids thought I was crazy, because they had been terrified that I would be struck by lightning or something, and Gabe was all, um no, I'm staying dry thanks. So I sighed and started getting undressed but not before he took this picture of me in my soaked clothes. I changed into something warm and fed my kids dinner, just like I should have done. But I wanted nothing more than to be outside in a freak weather scenario in winter feeling my body get wet and cold.

And to the person who honked at me because I jumped with both feet right into the river of water covering half of the street, what were you trying to say? Come on, you must know it too:

This hasn't happened before, and it might never happen again.

This--all of this.

Blink and you might miss it--that's one thing I do know.