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 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.

Day 945: What Fools These Mortals Be

I need to start this post by saying that I'm sorry if I offended anyone by using a Shakespearean quote for the title. I am not a long-dead Englishman, nor do I intend to imply that I am anywhere near as interesting as Puck, though the last time I attended a performance of A Midsummer Night's Dream (at the Shakespeare Theater in Chicago, with my kindergartener, on a school night), a bald woman was playing Puck.

So there's that.

Regardless, I'm writing this today because I'm having one of those parenting moments that is compounded in difficulty by the fact of me having had cancer.

I have a 3.5 year old who is very cognizant of death, and he wants to talk about it--a lot.

Some would say that it's a stage, or that all kids go through that at around his age. I disagree. I remember my brother being very concerned about death and about the bad things that could happen to people, but honestly, I was not--not until I got hit by a car when I was 9 and actually almost died. Even then, once I admitted to my grasp of mortality and imminent death, I went back to normal, concentrating on the day to day aspects of life.

My daughter is like me. Lenny is extremely bright, very aware of what life is all about and how things relate to each other, but she is also very focused on her own small version of life, of what comes next. And then, there's Augie.

He's the kid we are convinced has been here before, because nothing else could explain him. You strip away the crazy antics and the cuteness and the wild red curly hair and you are left with a person who seems to understand the adult world better than most of us adults.

This is the kid who grabs your face with his hands, looks you in the eye, and kisses you. The kid who nods his head in appreciation of your choice of wine. The one who sees a pizza delivery car and proclaims that it looks like a police car because there is something on top of it, and you realize he is only pointing this out because you are going over the speed limit. This is the kid who seems fearless, but shuts his eyes when crossing a bridge because "the car is too heavy and we might fall." The one who turns away when the trapeze artist is doing her most complicated tricks, because he doesn't want her to "fall all that way and die."

He is the kid who will ask me, so earnestly, "When I am in fourth grade, will you die?"

And I, being me, being in the situation that I am in, take his question seriously and say: "I hope not. I'm young and healthy right now, and I plan to be that way then too."

Augie doesn't really understand that I had cancer. I mean, he knows about it. We talk about it. But he doesn't remember any of that time, and if he sees a picture of me bald, he knows it's me, but he speaks about it devoid of any context of cancer. It's just another haircut to him. He knows that cancer is bad and it can kill you, because Lenny casually says things like that sometimes. But his interest in death is larger than that, and is not related to me--I know that.

Augie knows that we all will die eventually. He is just too young to understand what eventually means; to him it could be tomorrow, or in 4th grade, or in 500 years. He recognizes the impermanence of life, the thing that is most difficult for anyone to discuss. He says things like "I don't ever want to leave this house," because he knows that he will, and he loves us, and it makes him sad. He talks about "when I'm grown up Lenny will not be with me," because it breaks his heart. He is clinging on to those damn mamas because he knows he is too old for them, and he doesn't want to be too old. Hell, his interest in the legal drinking age is probably tied up in all of this too--or at least I'd like to believe he's not already planning his egregious hell-raising stage.

This is a tough one for any parent--trying to figure out how much to say, what to reveal, what to leave alone. It's a balancing act of answering his questions honestly and reassuring him at the same time. But for me, it is also so painful, for entirely selfish reasons.

Like many people who have spent time cheating death--and I say that not just as a cancer survivor but as a survivor of other things as well--I walk around with death as a constant companion. I've made my peace with the man, I suppose. I stop myself from going to that place that allows me to think about eternity after I'm gone, because I don't want to wander the world looking at people and seeing nothing but bones. A lot of my personality--the lightheartedness, the lack of pretension, the fact that really little things can please me so easily--is probably directly related to this knowledge that I've had for almost 30 years. Death is coming, for all of us, so try not to sweat the small stuff.

These days, it's been harder for me to just shrug and repeat that refrain. Maybe that explains the bourbon or the gin toddys I have at night. Maybe it explains the constant need to move my body, even while working in the office or at home--I have this inability to sit still, to be immobile, just like my son. This has gotten worse for me over time, not better. People say he will grow out of it, but I doubt it. Augie knows what's coming. He wants to feel as much as he can in the meantime. I understand him.

How can a parent admit to the eventual death of a child? It is impossible to contemplate, except with the understanding that of course I will go first. If I go early, that will make it easier to believe that my kids will live to be 300. But if he needs to acknowledge it, all I can do is acknowledge it with him and tell him that eventually is a very, very long time from now. Could that be a lie? Sure, I suppose. But I know my son. I understand him, as I said. He knows that though I am his mother, I have not one bit of control over life and death. And so he says to me, "mom, come on...lie to me."

So I will. And he will feel better, knowing that I am willing to look him in the eye and take responsibility for something I cannot possibly take responsibility for--his eternal safety and happiness. It is the fact that I would if I could that comforts him. And so we talk about death while we eat cereal, and sometimes I get exasperated with him over it, just like I get exasperated when he takes one bite and decides it's time to run laps around the house before he takes the next one. It's all in a winter's morning at our house.

It's strange loving people while working so hard to push them away from you, so they can walk away and become themselves. As parents, we think that we have these conflicting feelings on lock, but really, kids feel it too. And it's hard to know whether we should shield them from all the knowledge in their little brains, or work with them on finding an appropriate place to put it. I guess I am working towards the latter.

All of this made me think about a poem I wrote for Lenny just after she turned one, when she learned to walk. The poem takes place in early January and focuses on the time when she was about ten months old and starting to grasp the concept of walking. One of my greatest cancer regrets is that I don't remember watching my son learn to walk. He took his first tentative steps right around the time of my surgery, and really got moving while I was doing chemo, and I was so sick that I missed it. And now all he does is run, like he is hellbent on all the places he needs to go, until he slows down and looks at me with those old eyes and says "Kiss, mom. I love you."

Me too kid, me too.

Walking
by Katy Jacob

It’s started again.
The whole cycle, the twelve tests.
Because we live here,
you get to see it all at once—
early heat, a river of ice,
eighteen shades of blue.
Or you would, if we let you out.
But the world around the living room table
is a grand place, it exhibits signs
of what is to come, or what is possible.
Cold grooves in the floor,
hairbrushes, paper and keys,
a place to hide things.
You’ve put your faith there.
We can’t know what will happen
in your mind as you let go.
When you do, we’ll sink back
into ever lightening evenings,
and touch this table,
knowing that’s where you learned
to let your heart leap up
as your feet traced a month’s worth of days.
And knowing too that we are not the only ones
who impatiently tell time
by how long it will take us to get to
the places we’ve never been
from the place someone who loves us
will always want us to return.

Day 938: Cancer Hoax

As I sit here, 32 months after starting this blog, I would love to be able to say this to you:

PSYCH!!

But alas, I can't do that.

I actually had cancer. My cancer was real. I might still have it, for all I know. It might come back, I might die young, and even if not, I live with that fear.

So these people who make shit up about cancer are really starting to piss me off.

Today is a bad day for those of us who don't equate "lying" with "cancer."

We've got Lance Armstrong to deal with, as he goes and talks to Oprah to confess to something that I am supposed to care about because he had cancer, and I had cancer, and therefore we are the same person yadda yadda. During cancer treatment, it was all I could do to stop myself from losing it on people who would tell me that I would make it because "look at Lance Armstrong." OK fine, I'm looking at him. He had testicular cancer, people. His cancer metastacized to the liver and lungs and brain and you know what? Whether or not he doped and lied and acted like an asshole, whether or not you think he is a hero or a scumbag, here's the thing:

He's still alive.

Women with metastatic breast cancer, especially that which spreads to the soft tissues, especially if it's triple negative, will NOT, let me repeat, will NOT end up like Lance. Prognosis is given in months usually, not years. There is no cure.

So no, I did not relate to him, not even for his cancer stuff. I also don't think there's any reason that cancer patients can't be both heroes and assholes. We are people. Having cancer should not change that fact, so judge the guy on some other basis and please leave the rest of us out of it. We're all sitting here at our day jobs, neither rich nor famous, hoping for the opportunity to see our bodies decay naturally, and we don't have time to listen to that crap.

Thanks!

Now, on to the other side of the lying about cancer coin. If you go to wikipedia, you will find all kinds of information dedicated to this apparently popular concept of the cancer hoax. People getting money based on false reports of cancer. Women shaving their heads and their eyebrows so they can play dress-up cancer. College football stars who claim they really did believe their girlfriend was a real person, a person who died from leukemia.

If you ask me, there's no way in hell Manti Te'o wasn't in on the whole thing. It's impossible. But, you didn't ask me. So let me say this.

I'm glad that dude wasn't MY boyfriend.

Look--I met my husband online. We exchanged a few emails. We met in person for dinner. We started dating and sleeping together like normal, actual people, and we fell in love and got married and had kids, so I am standing here to tell you it can happen. And then, after all that, I was diagnosed with cancer. REAL CANCER. And he cared for me, shaved my head, injected syringes into my hip to keep my white blood cell count up, consoled me while I vomited, took care of our kids.

He sure as hell didn't say, oh you have cancer? I am too busy to visit right now. I have to go play football. And I will also be too busy for your goddamn funeral, and oops, I forgot to write an obituary.

No, he didn't say that.

I cannot even wrap my mind around these sick people who make shit up about cancer. It makes me swear even more than usual. It's especially bad when it's done for money, or to garner sympathy in order to win a trophy, or for some other inherently selfish reason. I know that there are people out there with some form of mental illness that leads them to lie about having a disease, and though it's very hard for me to sympathize, that's at least better than just being a complete jackass who is looking out for himself and doesn't give a damn about people who are actually suffering from the disease that he is LYING about.

When I had cancer, I felt extremely lucky and grateful that people helped us like they did. Friends and family brought us meals, did chores for us, helped watch our kids, and occasionally ran errands. They sure as hell didn't give us MONEY. Now, I don't begrudge people who do get money through fundraisers when they have cancer, because cancer is an extraordinarily expensive disease. It can wreak financial havoc on a family. In a way, I was "lucky" to have had a pre-existing condition (epilepsy) that required me to sign up for HMO rather than PPO insurance, because I went through all the crap I went through and paid for almost nothing. But I get it. And the truth is, most cancer patients would gladly just have the prescriptions and procedures covered by insurance than take money from folks. And we sure as HELL aren't seeking fame.

And we are the very real people who are affected by other people's make-believe. When I was going through chemo, I started having difficulty figuring out how to balance work and cancer treatment. By that I mean that while my co-workers and managers and HR staff were sympathetic and flexible, standard policies were not working well for me. Short term disability, for example, should have been an option. But with my chemo schedule, I would have a few very bad days and then feel fine--well not normal person fine but cancer patient fine--for a week or more.

I argued that it wasn't like having a broken bone or having surgery. It wasn't like oh ok, I'll take 4 weeks off and then be back to normal. It was months of treatment, with highs and lows that were easy to predict along the way .I said that there was no reason I couldn't do my research job during treatment, especially since my manager didn't mind me telecommuting if necessary. I remember when I first started chemo and I had the morbid insomnia, and somehow my mind still functioned well even on no sleep at ALL after multiple days. My mind was fine, so I could work, but on the last few days of that I could not get out of bed without falling over. I called my boss and told her this. She said fine--work from bed today. And I did; I was quite productive actually, probably because I was going insane. And when I started taxol chemo, I felt very good, comparatively, and then I learned that my WBC count was so low that I could die from any germ, so therefore I couldn't be around people. Again, I worked from home after clearing it with my manager.

Over time though, it just got to be a pain in the ass to deal with the paperwork. My boss came to bat for me. She was great. The HR rep felt for me, but said that the policies were as they were so that people could not take advantage of them. I sat there for a minute, absorbing this.

I looked at her very carefully and pointed to my bald head. I am not making this up.

She was shocked and said, I know, I know! Of course you're not.

At the end of the day, I worked through two surgeries and 7 chemo treatments. I took time off for three months during the "easiest" part of treatment--the last chemo and radiation--not because I could not work, but because I was tired of trying to jump through hoops that were erected to deal with hypothetical people who would only experience disease hypothetically.

And that's a very real example of how the liars in the world cause real life problems for people who actually have the disease that others just play on TV.

If you want to make up a girlfriend, have at it. Delude yourself and everyone around you. Spend time on your elaborate lies. I don't care. You can even kill her off in a freak accident. Just leave cancer out of it, ok?

Again...thanks!

As punishment, I think anyone caught perpetrating a cancer hoax should be ordered to spend time in a children's hospital where there are children dying of cancer. Talk to their parents. Try to figure out how to respond when a dying child speaks of the future she will never have, or worse, when she doesn't speak of that future, because she knows she will not have it. Go to any hospital in the country and find women with breast cancer, REAL cancer, because every single hospital in the country is bound to have some of these women. Ask them how it feels, what it's like to do things to your body that you know are atrocious and poisonous but you do it anyway because you have no choice. Read their blogs, especially the really honest and difficult posts that talk about the pain, humiliation, suffering, and death aspects of cancer. Go volunteer at a hospice center. Interview kids who don't remember their mom or dad because cancer ripped them away when the kids were very little.

You can keep your apologies and your contrition and your explanations. That is not what I want from you, cancer hoaxsters.

Do you know what I want?

I want to trade.

I would like to trade for your healthy. I would give you my pretty, or my smart, or my skinny or whatever it is that I've got that you'd like to have, and I would trade.

So that I would not have had cancer, nor have its specter hanging over me and my family.

But I can't.

Because my cancer was real, and everything that I have said about it in this forum has been real, based on my actual experiences and how I interpreted them. They might not be what people wanted or expected to hear, but I promise you this:

These words are true.

Day 932: Chemo: The Gift That Keeps on Giving

Just so you know, one of the more aggravating things about being a breast cancer survivor who has done the typical trifecta of treatment--surgery, chemo, radiation-- and is lucky enough to still be alive a few years later, is how everyone assumes you are "done" and completely back to normal.

Now, most people realize that you are forever changed, even if that is hard for them to say out loud. But the assumption is that you have made it, you beat it, and, well--you're done.

Let's ignore the fact that remission doesn't technically exist for breast cancer. Let's ignore the legitimate fear of metastasis that you live with oh so casually. The thing is, breast cancer treatment stays with you for years, regardless of how healthy you are. Sometimes, vestiges of it are with you forever.

So it is with chemo. Chemo was so hard on me, and so much bullshit happened, and yet, I have recently realized that my body actually handled it amazingly well. I see what other people go through, and that skinny bald girl with no sweat glands who refused most side effect meds seems like some kind of superhuman now that there's some distance between us.

There were all the random signs that my body was extremely angry with me for poisoning it like that, and I did have the heart scare (which turned out to be an allergic reaction to taxol, no matter what any doctor says) and my WBC count did plummet that one time, making me unable to do the sixth chemo session on time. But I bounced back even from that all of five days later. I never had neuropathy, nor chemo brain. My weight dropped but not precipitously. I remained active. I never got too tired to function, even with the morbid insomnia when I didn't sleep at all for five days. I never needed a blood transfusion. I got over menopause. I didn't even burn badly from radiation. And once I was given some physical therapy, I was once again able to do all kinds of exercises that a lot of able-bodied people who haven't had cancer nor chemo can't do.

I was, I suppose, lucky. Or maybe just really healthy, and young, so I could withstand the poison. Who knows? I guess it doesn't matter why.

But chemo changes you, not just through the Kafka-esque experience of it all or the baldness or the way people treat you like you are someone else. It actually CHANGES your body. For example, I really did used to have all of my toenails. Why three of them decided to wait to fall out until two years AFTER chemo, when many people lose many or all of them DURING treatment, I will never know. But there it is. A reminder.

And I have been going back and forth about whether or not to write about the absolute most depressing aspect of cancer treatment that I have dealt with--the seemingly inevitable return of early menopause. I really thought I had beat that. I have voiced my concern over the Flowers for Algernon effect of knowing what I know now about menoapuse, and never wanting to go back, knowing that I inevitably will someday if I live long enough.

I just thought I had more time. I am only 37!

My cycles are short--one sign of perimenopause; my last cycle was only 19 days long and that left me so depressed as I thought of the implications that I just sat down and cried. Even with these new cycles, for a long time, my raging libido was back and I was my old self, sexually speaking. Now...it's different. Nothing is gone nor terrible but I have my days, or weeks, when sex is difficult for me the way it is for many women. I feel completely alien to myself in those times And I am raging against what this means for me, and I am filled with anger over having to kill my healthy ovaries, and I live in fear of what it will be like to have hot flashes every ten minutes all day long again but this time there will be no treatments (not allowed for breast cancer patients) and no end in sight. Call me dramatic. I don't care. It upsets me enough that I can't say any more about it.

I can, however, say something about that gum surgery I had yesterday.

At some point I wrote about how one day, in the middle of AC chemo, I took what I thought was a piece of food off of my front bottom tooth and my entire gum came off. I had an emergency dentist's visit, and was told that it might regenerate. Around Thanksgiving this year, so more than two years later, I realized there had been no regeneration and that sometimes my tooth hurt. I didn't want to lose the tooth, so I went to a few different peridontists, both of whom told me I needed a tissue graft to shore up the tooth and protect it. I dreaded the very thought of the surgery.

And I was PISSED. AC chemo can do a number on your mouth. I remember having to use the mouthwash for dry mouth and using the special toothpaste because I had no saliva left. Do you know how dangerous that is? It doesn't sound bad, but let me tell you, IT IS. Some people lose their teeth or just watch them crumble along with their toenails. People get horrible mouth sores. So, I had this stupid gum thing, and it was probably not that bad in the scheme of things, but it was, and is, a REMINDER. And that seemed bad enough.

I did my research on these grafts. One of the doctors suggested I get the surgery using cadaver tissue. OK, yuk, right? But that seemed like a better alternative than dissecting the roof of my mouth and leaving a gaping wound there to get infected. However, it's very expensive to do it the cadaver way, and that office never bothered to keep in touch with me, so I made the appointment with the low-rent local office that wanted to go old-school.

I considered ways to get out of it, right up until the bitter end. It seems absurd, considering how many things I've been through that are worse. I mean, I've delivered babies for Chrissakes. I've had CANCER. Who cares about mouth surgery?

But it's like something out of a horror movie, right? There's just that memory of Marathon Man in my mind. Yikes.

But once I was there, I don't know--it wasn't that bad. He only used local antisthetic (a hell of a lot of it, as we redheads require more anesthesia--seriously, true story), and the whole thing took maybe 20 minutes. He put a washcloth over my eyes "to protect them," though I'm sure that was code for so you can't see what the hell we're doing to your face. Of course, I could see out of the corner of my eye, so I watched the whole thing.

As an aside, I've always been like that. Medical procedures fascinate me. As a child, I would watch them draw blood during routine checkups for epilepsy. I watched the seven core needle biopsies done with the 15 inch long, half inch wide needle. I watched the chemo course into my veins. I stared at the raw wound on my arm when I was burned at 19 and it was being professionally cleaned.

So, I watched as this dude stuck a scalpel in my mouth and cut open part of my flesh, placing it on another part and threading a few needles into my mouth for stitches. I watched him as he asked his assistant to "dab," meaning wipe off my face--up to my nose, close to my eyes in fact--because of all the blood that had spurted everywhere. Then I watched him put some silly-putty looking stuff over the wounds, though some places actually give you a retainer or something. Again--old school.

Afterwards, I waited for Gabe to pick me up (I had walked over to the office) and sent him over to pick up my antibibiotics (I informed the doctor of the one that I know I am not allergic to--they should just let me write my own prescription at this point). I went to get some ibuprofen from our medicine cabinet only to find that we had none. I had refused the narcotic painkillers--can't take codeine, don't like tramadol--and let me tell you that shit HURT. I kept calling and texting Gabe but he wasn't picking up because apparently he'd left his phone at home. I wanted to kill him when he got home, but he had picked me up an US Weekly, along with The Bourne Legacy and Ted to watch from bed, so I couldn't be that mad. Plus, he found the ibuprofen. I was in a lot of pain; I felt like I had been kicked in the mouth, but you know what?

It really wasn't so bad. I could even eat today on one side of my mouth. I did some conference calls for work. I went to the gym today for a spin fusion class and was almost happy that the pain in my mouth distracted me from the pain I always feel in my chest, or the pain I felt today in my hips because it's a very strange, rainy January day.

Does it hurt? Sure. But I've had so much worse pain, this barely registers on the scale. I didn't take any painkillers at all until late in the afternoon. So, I probably should have done this sooner, honestly, if I hadn't been so damn annoyed at the very thought of having to have surgery because of chemo years after chemo ended.

So this is just to say that the poison that you ingested can stay with you, for a long, long time. That fact is part of what it means to be a breast cancer survivor. And sometimes I write this blog just so I can tell it like it really is, no matter how little people would like to hear it.

It stays with you in ways large and small. When the mail comes, I wonder who the genius is who still sends me Victoria's Secret catalogs, and I decide not to renew my Glamour magazine subscription after almost 20 years because there's so much stuff in there about HAIR and other things that just seem pointless, though it does teach me that this permanent bedhead look I have going on could maybe pass for stylish. And I have to have surgery, and I will probably go into menopause many years before I should, and none of this would have happened if those little tumors hadn't decided to rock my world a few years ago. It is what it is, I suppose.

Here's to healing, for now, and for as long as I get to keep the feeling.

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