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.

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 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 858: Disaster Drills

I haven't had anything to post about in a while, and then I started thinking about something small, and I figured I could write about that, but then I wondered why anyone would be interested in reading about my small stuff. I mean, right now, there is this massively disastrous storm literally brewing over the eastern half of the country. Everything seems to be at a standstill: the election, the financial markets, travel, communication. It brings me back to that surreal day in 2000 when the power went out in the Loop. Obviously that wasn't a disaster and wasn't on a scale that even approaches this, but I remember so vividly how everyone walked around in a daze, wondering at the big city with no lights. I remember Mayor Daley's purple face on the news the next day, his rage so unfettered and real. I remember being one of the only people riding the El home, because I knew that the CTA had its own power supply and that I wouldn't be stranded on the train. I knew the buses would take forever with no streetlights. It is, oddly, one of my favorite memories of Chicago.

This storm, this Sandy, is obviously something else entirely. It is the thing everyone is talking about, the thing that matters for us right now. These are the types of disasters that keep everyone in rapt attention, including me. But there's something else I feel about them as well: fascination.

No, I'm not a weather geek. That's my daughter. She tells me every morning, after reading the weather page in the newspaper, about various random weather facts: what time the sun will rise (mom! it's going to rise at the exact same time that the bus leaves for school! isn't that cool? Um, sure, honey...), what the weather is like where various relatives and friends live, the records that have been set, the types of clouds.

It's hilarious to have a little meteorologist in the house, but that's not what gets me about these things.

I am completely fascinated by the human element; not just the suffering that I hope people don't have to endure in too great a measure, but the social aspect.

What does that mean? Well, some of you know that I have a masters degree in urban planning and policy. I've never actually planned urbans; my career has rather been very policy-based, but the whole notion of what happens with social norms in an extreme event, and how human beings manage large institutions, is fascinating to me. So they are evacuating large parts of Manhattan and other big cities on the east coast...at the same time that they are closing roads and shutting down all forms of transportation. Now I am not saying that those are bad decisions. I'm just SO CURIOUS about how everything will turn out, how folks will try to make order out of chaos if it comes down to that. Because usually, that is exactly what most people do. People WANT order. A few of the proverbial bad apples might loot, or cause mayhem, but for the most part people do band together and try to find their way out of the mess. And I sit there and wonder...why? And how?

I read all the books about major disasters--shipwrecks, factory fires, floods, you name it. The parts I find most interesting have to do with arcane things like codes, or the lack thereof, or how such events led to stronger labor laws, or tidbits about why Chicago is one of the only places in the world to have so many buildings made of blonde brick. Of course the human interest aspects touch me, and who could not feel pain in the face of such tragedy?

But something about what comes out of it is just almost thrilling to me, no matter how strange that sounds. I guess everyone reading this knows that I'm not a normal person by now anyway. I'm that girl who knows all about how payment systems failed following Hurricane Katrina, the one who went by herself, while pregnant, to see a movie about how black communities were decimated from a cultural standpoint (huge amounts of lost jazz photos, public squares that served as community centers and were never re-opened, musical communities that were lost forever) from the same event. I'm the one who chooses books about genocide for book club. There are reasons for this that come out of some very strange and specific aspects of my upbringing; the details are related to a rather involved family history as well, and it is too complicated to get into here. The point is that I seek out information about these kinds of hells on earth.

Hell, I do this even when it doesn't make sense for me to focus on the macabre. When I was in the hospital suffering from that damn chemo-related temporary heart condition, I got a phone call from a friend in Seattle. She might have been the only person who wasn't related to me who called me. And she wanted to let me know that she had seen a book in the store that made her think of me, and she was going to send it to me, because she thought it would make me feel better.

It was about reconciliation policies in Rwanda.

I shouldn't have been surprised. We used to go to the beach together and lay there sunbathing while reading books like that. And of course she was right--that was just what I needed. I feel a very strong desire to find out about things that are very disturbing, because I feel that we fail each other if we do not bring them to light.

I have not been shy about admitting to my social justice-orientation to the world. What's strange is how I think about it all the time--justice with a big J. Justice from a human rights perspective--that's really what I should have focused on in my career. In a way, I did, as financial justice is one part of the whole. But sometimes I look at the state of women in the world, or just in my own backyard, and I can't believe that I don't do something related to that for a living. I think about slavery--current-day slavery in addition to all the different past iterations of the same. I know more about every genocide that has ever happened than most sane people would care to even contemplate, and then I sit there at night and am haunted by thoughts like this:

What about all the genocides from throughout history that were truly successful? The ones that wiped populations out so completely that we don't even know that they ever existed?

And then I think, now, why would anyone want to read what I have to say about my life, which is so small? On the one hand, I write about the disturbing things that many people don't like to give voice to in relation to cancer, disability, sexuality, and even death. On the other, well, my life is pretty damn good. And even when it's hard, or has been hard, in some ways, I've been prepared for it. I've been giving myself disaster drills my whole life, wondering when the other shoe was going to drop and what I would replace it with, looking over my shoulder and wondering where the getaway car was, modifying things, cheating death.

And yet I have never been very serious, except maybe here. I'm just too inherently content, albeit pissed off, most of the time. So my mind is filled with this big stuff, and sometimes my life is filled with this small stuff.

What I was going to write about was this: This weekend, Gabe and I went to the wedding of his oldest friend. We went to lots of weddings about 7 years or so ago; we got married 8 years ago and were one of the first among our group of friends to do so. But now we're at the point where people are getting divorced, not married. So I don't often have an occasion to dress up too much. It took me a while to pick out a dress, even though I have a lot of cute ones.

Gabe helped me decide on a fairly slinky black number. I remember very well the last time I wore that dress. It was actually for the last wedding we attended--about two and a half years ago, exactly four days after my cancer diagnosis. Before the wedding, we took this picture that turned into one of Gabe's all-time favorite pictures of me. Later, we did a split-screen shot of that picture with one he took of me right after he bic'd my head, so that he could show me that I looked the same (I didn't see it then--though I do see it now). And I was just so lost, so grieved, so unsure of what my future would hold or if I would even have much of a future. I cried at the wedding, I cried after the wedding, I was sad about everything. I could hardly eat my chicken shwarma after we left the reception because I just couldn't talk to people. My husband held me while I cried in the restaurant, and the woman behind the counter pretended not to notice. The next day, I wrote what turned into what I still consider to be one of the saddest, most difficult-to-read blogs in the two and a half year history of this thing. It was my first Mother's Day post.

And then...this year, I put the dress on, didn't bother putting on a bra, planned to wear bare legs with my heels until one and a half of my toenails decided to finally fall off (two years post chemo! the gift that keeps on giving!), decided to put on fishnets instead, slicked back my hair, put long dangly earrings in my newly-pierced ears that haven't healed correctly, and let Gabe take the wheel for the long drive.

The ceremony was very simple and touching. I teared up a bit, thought about beginnings rather than endings, and smiled. We had time to kill before the reception. We went to a few shops in the suburban downtown, then went to the bookstore. We could have gone to a bar, I suppose, but I guess we're nerds. Then we headed over to the reception; Gabe knew some people, though I really didn't know anyone else.

And I didn't care.

Damn did we have a good time! So much food and drink, and new people to meet. And then...the dancing. Now. Gabe is one of those people who claps on one and three. He has NO rhythm. And while I DO have rhythm, I haven't been much of a dancer for years, for some reason I don't really understand myself. I used to go clubbing in high school (all ages night--a euphemism for underage girls welcome so grown men can try to get with them!) and in college, at least for my first year or so. At some point I became more self conscious; I didn't like getting any attention at clubs, and I didn't dance as much. For years I dated a man who danced with me in the kitchen of my apartment. We were too broke to go to the club, and that was more fun anyway. Gabe and I took some ballroom dance lessons when we first got married, and mostly it just made us frustrated.

So no one was as surprised as I was when we spent hours on the dance floor together, Gabe enthusiastically showing the world about his lack of rhythm and his love for me, and me dancing for real for a change. I laughed at him, he laughed at himself. He bumped into people and sometimes turned me the wrong way. We were one of those cheesy lovey dovey couples that annoys people most of the time, except at weddings, where it's ok.

That was it--I was going to write about that. About that moment I couldn't see two and a half years ago when I went to a wedding wearing a tight black dress, when I would be happy, when I would weigh a few pounds more because I wasn't too anxious and terrified to eat, when my hair was pointless, and I wasn't thinking about the death part of till death do us part and I could look back and know that when illness and suffering happened, we would make it through.

It just doesn't seem that important, though. Life is both a tragedy and a comedy. It is big and small. There is always something more joyous happening somewhere else, and something more horrifying. The horrifying is the only one worth worrying about, because it can provide some perspective and help us to help others through the world. And life is also, for me, a story.

Some wonderful stories are born of real tragedy. And you all know that I read the last line first, lest I don't make it to the end. This is why I sometimes don't know why I say things, because what I wanted to say has already been said, often so well that it isn't worth trying to beat:

the last lines of The Bridge of San Luis Rey by Thornton Wilder:

But soon we shall die and all memory of those five will have left the earth, and we ourselves shall be loved for a while and forgotten. But the love will have been enough; all those impulses of love return to the love that made them. Even memory is not necessary for love. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.

Day 847: 2 Years Post-Chemo

Two years ago, I did my last chemo treatment.

Hopefully.

The end of chemo is a milestone that cannot be underestimated. For someone like me, who had such an absurd and difficult bout of suffering with chemo, the thought of doing it again is terrifying. The thought of that last day, that last treatment, was one of the only things that kept me going as my body experienced new and bizarre side effects and made me feel alien to myself. I had to continue to tell myself that mid-October would come, and I would be DONE. I had to tell myself that that would be it, that I would not have to do this again, no matter how unlikely that might have seemed at the time due to the aggressive nature of my specific disease.

Here's the thing. For many cancers, there are a variety of treatments, even if the dreaded recurrence happens. With breast cancer of all kinds, a stage IV diagnosis means a few things. One, it means about a 15% chance of surviving 5 years. Two, it means that for the rest of the time that you live--your entire life--you will be on chemo. For TNBC, it means that the rest of your life will be spent doing chemotherapy regimens that were really developed for other types of breast cancer, and that your chances for that five years are essentially zero; though that reality might be changing. But the bottom line is that Stage IV breast cancer means chemo forever.

Think about that. This fact is simply not true for many other cancers. There are women--the real warriors, a word I don't like to use when talking about breast cancer--who live with chemo for years and years. Many of the side effects for chemo for advanced breast cancer might not be readily apparent; women might hang onto their hair, for example, but their bodies take one hell of a beating.

I don't know how they do it. I have nothing but admiration and respect for people who do this, and I don't say that with any kind of pity or paternalism.

I can say that I don't know how they do it, but that is kind of a lie. I know that they do it with resignation and hope, two things that we think are mutually exclusive but are actually very closely linked. And moreover, I DO know WHY they do it.

You do these things, because no one knows what else to do for you. You do these things because your desire to live is stronger than your desire to feel what "normal" people consider to be "healthy." You change your definitions, your mindset, and your day to day reality and you put up with things that would bring other people to their knees. You do this because you don't have a whole hell of a lot of options.

Cancer is hard. No one feels the same after a cancer diagnosis. Surgery is rough, painful, disfiguring. Radiation is no walk in the park. Maintenance medications can make you feel like a zombie. But in my heart, I find it hard to relate to people who have had cancer and didn't have to go through chemo. I envy those with chemo regimens that are on the "lighter" side, and those who didn't have a tough time with it. It's stupid, and it's irrational, but it's real--these feelings are real. I know the fears that all cancer survivors experience, I appreciate their perspective, and I have more in common with them on this one subject, this one way of walking through the world, than I do with most other people I know. I can see the look in their eyes and glimpse with them that vision of the future they aren't sure they are going to have, even one year later, just as I can see it in my own eyes that are reflected back into the camera lens almost exactly a year after chemo right here:

But my experience with cancer was so linked to my experience with chemo that I cannot separate the two. Chemo took my hair; it made me sick in ways that I didn't know were possible when cancer never made me feel sick at all. Chemo threw me into menopause, made me weak, made me lose weight. Chemo put me into the hospital with a temporary heart condition. Chemo made it impossible for me to sweat, sleep, or cry. Chemo gave me hemorrhoids, bone pain, stomach pains so intense I could barely walk. Chemo made it obvious that I had cancer; it brought me closer to death than cancer ever had. I dreaded each treatment, and yet felt absolutely devastated when I was sent home at my sixth treatment because my numbers were too low. Chemo taught me, or rather reminded me, that not everything in life is a question of mind over matter. Sometimes, matter matters. All your mind can do is force you to keep going, to hand your arm over, to stubbornly do things as you did them before, to walk around bald and glare at those who might shun you or pity you or even compliment you.

Chemo taught me to wait, to wish for time to speed up even as I clung to every day with an intense fear that I would not have many others to cling to; chemo gave me a goal, which was to make it until October 13, which turned into October 18 due to the WBC issue. I still had months of treatment left after chemo, but I was hardly even concerned with that, as I felt I had jumped the biggest hurdle.

My chemo nurse told me on that last day: You did it. This is never easy. This is very, very hard for everyone. I can tell you that after years of doing this, this regimen did things to you that I have never seen before, and I know how much you wanted to quit. But you did it. It was a lot of suffering for a short period of time so that you can live a lot longer. I don't think you will have to do this again. Go have some champagne. Visit me sometime. And...good luck.

Amen, sister.

Here's to hoping that October 18 will always mean the same thing to me: the last day I poisoned myself with toxic chemotherapy. I don't ever want it to mean the last time, as in the time before this one. Chemo for stage one cancer lasted for four months. Chemo for stage four cancer would last for forever. So, I celebrate this anniversary just two days after I celebrate my wedding anniversary, and I can tell myself, my husband, and my family this:

I am hoping for many more years to see how we've all grown and changed. I tried my best to have the chance to define what kind of forever I would get to celebrate. Let's hang on to what we've got.

Day 833: I Hate Breast Cancer

This picture was taken about a week after my cancer diagnosis in early May, 2010.



October is supposed to be a month wherein I feel celebrated, but in so many ways I don't feel anything but lost. And angry. And I've been supposedly "done" with cancer for almost two years, so I shouldn't feel that way, right? When I bring up any kind of fear to those I'm closest to, they of course tell me that I beat it, that I haven't had cancer in my body since June 4, 2010, when my tumors were removed, that I will live a long life. They tell me that because they have to believe that because of the pain it causes them to think otherwise. So, mostly, I keep it to myself.

Except here. This is my place. The place I go when there's nowhere else to go in this Cancerland. So, I'm going to list a few of the reasons that I hate cancer and am angry at cancer and I don't care who reads it or how un-inspirational folks think it is.

I hate breast cancer because:

It isn't like other cancers. You can catch it "early," and it can still come back and kill you--months, years, later. Some new conventional wisdom estimates that a minority, maybe only 30%, of breast cancers are helped through early detection. Early detection does, however, help in one major way:

It helps us as a society think of breast cancer as a benign disease that is easily "beaten," and infinitely survivable. "Survival" statistics for breast cancer mean one thing and one thing only: how likely is it that a woman who is diagnosed with breast cancer today will be alive in 5 years? 5 YEARS people. That wouldn't even get me to 40. And the reality is that early detection might mean that I will have known about my cancer longer than someone else who found the same cancer later--so technically I have a better chance of "surviving" 5 years, even if that other person and I live the exact same amount of time with our cancer. If you have breast cancer for 8 years, at which point you die, but find out about it 2 years into the tumor's growth, you will be one of the 5 year survivors, pumping up breast cancer charities' statistics. If you discover the tumor 5 years in but still die after it's been there 8 years, you will not be a 5 year survivor, and charities will be able to use you as a test case to show why early detection is so important--even though it didn't do jack shit for that other lady's life expectancy.

But I digress. I also hate breast cancer because:

I didn't even have breast cancer. After I wrote the blog about new breast cancer research showing that TNBC more closely resembles ovarian cancer than breast cancer, I really lost it. I waited for Gabe to take the kids out, and I just sat down and cried. I cried in the truest way that Katy Jacob can cry--for a few minutes, maybe two and a half, and then, I just stopped, because that's what I do. I'm not sure if I know how to cry for long periods of time anymore. I sat there and thought about the women I know who are diagnosed as TNBC today, who take taxol but not AC chemo, and are offered totally different, less toxic chemo regimens that have been used for ovarian cancer for years. I thought about PARP inhibitors. And now, I think about how much I suffered on AC, not just in the normal ways that people suffer on those poisons, but in all the other ways that were specific to me that gave my doctors pause. It might be hard for you to hear this, but imagine--just imagine--how hard it is for me to say it: I DID THAT FOR NOTHING.

I hate that I risked permanent heart damage, that could happen at any time, I risked the potential for other lethal forms of cancer caused by the drugs, I got so weak and sick and scared my children and had morbid insomnia and lost the ability to sweat for an entire year and I could go on, but the important thing is that IT WAS FOR NOTHING. I told my mom I wished I had been diagnosed TNBC 8 years ago, so it wouldn't seem so cruel to learn what I've learned just two short years later--two years too late. I would have lost my hair and gone into menopause on taxol anyway, but, man...that Red Devil, that Red Death--adriamicin. That Cytoxan that could almost kill you just looking at it. For nothing.

I hate breast cancer for reducing women to their tits. Even other women do this to us. If you do one thing for me, do this. Do not save the tatas. The tatas don't matter. Sure, I'm glad I still have mine. But if I find out in a few years that my cancer is back, what good will that do? Save me, save my life, not my tits.

I hate the misinformation. It's pretty clear that for women who are triple negative but also BRCA-, the risk of local recurrence is low. It's high for BRCA+. But for me? Cancer is much more likely to return in my liver than in my other breast. So why are doctors still encouraging double mastectomies in some cases like mine? Why do women think that mastectomies will save them when that is only true in certain circumstances? Why do people who mean well, friends of mine even, say things about breast cancer like, "oh I heard it wasn't really that bad" when 100 women die from the disease in this country every day? When 1 of your seven best friends, or you, will have it--WHY?

I hate the pink. I hate people making money off of my suffering and my family's potential loss without any real benefit for breast cancer research or any substantive changes in survival rates over the last several decades. The death rate of breast cancer is stubborn. It might look like it's falling, if you compare how many women with breast cancer die from the disease today compared to 20 years ago. But that is the wrong statistic, and it goes back to the early detection thing. Mammograms just found more cancers, so breast cancer rates increased, because women now knew they had something they didn't know they had, and the death rate became a part of that larger number. But the real number, the one that looks at breast cancer deaths per capita for women as a whole, not just women who have been diagnosed? THAT SHIT IS THE SAME. YOU ARE AS LIKELY TO DIE FROM BREAST CANCER TODAY AS YOU WERE 20 or 30 YEARS AGO.

I hate, more than anything, the fear. I hate how I have felt the last week in the gym or when walking up the hill to my house. My ankle has been giving out, hurting, refusing to correctly support my weight. I ignored it, but then I started to worry. Bone mets below the knee is rare, with about a 1-3% occurrence rate of all bone mets from breast cancer. That should make me feel better, right? Well, maybe, if I hadn't been in the 2% for all the other shit that's happened with this damn disease. Oh, I just twisted my ankle, I did it during spinning or when running after my kids or it's just because I'm getting older, right? Well, yeah--if I was normal. If I hadn't had cancer. If I didn't know young healthy women who thought they had beaten the beast only to find out they had bone mets when they were running a race, who didn't find out until they had reached the 5 year mark and thought they were free, who were thin and active and awesome and beautiful and strong and cancer just didn't give a shit. I hate having my first UTI in years, ironically just after we were finally able to give up the condoms (!!) when Gabe got the all-clear after his vasectomy, and wondering, somewhere, if that's really what was going on. All that peeing could have been a symptom of bone mets or something else, after all. I hate how scared I was of possibly getting pregnant, how I felt like a teenager, how I told Gabe, but we are not like other people, we cannot have an "oops." We have to be sure.

I hate talking to my husband about death in our marriage bed.

Some days, but not many, I hate my hair. Most of the time I love it, but I have my days when I think about that long curly hair and I want it back. And even in the middle of those moments I know that I have no patience to grow it out, and that even if I did, I wouldn't want it once it was there, because I wouldn't recognize that woman anymore.

I hate that she's gone.

I hate that I do the right things, in the normal ways, and how normal it makes me seem. I call in and ask for a strong dose of Cipro, and it works, and there goes the UTI. I modify for the ankle, it starts to feel better, and I realize that wouldn't happen with cancer. I have never been truly depressed from cancer, never been medicated, never had anxiety attacks, never been unable to work or take care of my kids or laugh or live my life. And so it is as if it was all in a dream, including the suffering I endured needlessly and the thought of the medicines I could have taken that might have helped that weren't offered to me. People forget about it, or are sick of hearing about it, and assume I am a hypochondriac or a drama queen when I've never been anything but a realist about this nonsense. I am supposed to act like I "won," but it's hard to believe that when none of us had even correctly identified the guy on the other side of the ring.

I hate breast cancer.

This month, wear green for me. It is, after all, the color of the earth during its healthiest time, and yet it is also the color of envy, the color of youthful ignorance. The one I'd love to go back to someday.



If you're looking for more lighthearted posts, I can also be found at livechickenonsix.

Day 873: All for Nothing?

I've said it before--this breast cancer stuff is sure a strange trip. Things that are promising and exciting can still manage to leave you with that sense of dread, or fear, or anger, or all three. Things like the fact that there is significant progress being made in figuring breast cancer out, as in REALLY figuring it out, not just talking about awareness and hope and bravery.

Several people have sent me a link to a story published in the New York Times about this research:

http://www.nytimes.com/2012/09/24/health/study-finds-variations-of-breast-cancer.html?emc=eta1&_r=0

Those of us "lucky" enough to be survivors of this disease talk about what is behind this research all the time, even though we are not "experts." We know that this is not one disease. We tell each other, my cancer is so different than yours. I think to myself, I had none of the risk factors (except for early menses, long-term birth control pill use and recent pregnancy/nursing; those latter two having only recently entered the general conversation about risk factors) associated with estrogen-positive cancer. We question why some of us live and some of us die.

And lo and behold, when I talked about the fact that "triple negative breast cancer doesn't exist," it looks like I might have been right. And with that potential truth lies the possibility for treatment for TNBC that will be effective, rather than just a shot in the dark. And yet... how should I feel about learning this? And by this I mean THIS:

The study’s biggest surprise involved a particularly deadly breast cancer whose tumor cells resemble basal cells of the skin and sweat glands, which are in the deepest layer of the skin. These breast cells form a scaffolding for milk duct cells. This type of cancer is often called triple negative and accounts for a small percentage of breast cancer.

But researchers found that this cancer was entirely different from the other types of breast cancer and much more resembles ovarian cancer and a type of lung cancer. “It’s incredible,” said Dr. James Ingle of the Mayo Clinic, one of the study’s 348 authors, of the ovarian cancer connection. “It raises the possibility that there may be a common cause.”

There are immediate therapeutic implications. The study gives a biologic reason to try some routine treatments for ovarian cancer instead of a common class of drugs used in breast cancer known as anthracyclines. Anthracyclines, Dr. Ellis said, “are the drugs most breast cancer patients dread because they are associated with heart damage and leukemia.”

I mean, WOW. So maybe I have more in common with lung cancer and ovarian cancer patients than breast cancer survivors. Those two types of cancer are much deadlier, so that doesn't make me feel better. In the absurd land of cancer, I kind of liked being in the camp where a decent percentage of people survived for a long time. Moreover, it's possible that every single sentence that anyone utters about breast cancer--causes, risk factors, lifestyle fixes to prevent recurrence, treatment, survival rates--is completely meaningless for me and others like me.

And then, there's the thought I almost can't bear to mention:

I might have done chemo for nothing.

Well, at least I might have done AC chemo for nothing. Taxanes might still be a must for triple negative--I do believe they are used for other cancers, such as ovarian, as well. But adriamicin? The one that gave Robin Roberts a potentially fatal blood disease that used to be called pre-leukemia? The one that just completely knocked me on my ass, sent me into early menopause, took my "epic" hair and made me so weak and skinny I couldn't feed my baby his lunch without using two hands? The drug that robs so many women of their fertility--forever? The one that can stop your heart?

It doesn't do any good, probably, for TNBC. Even when I was in treatment two years ago, there was a little bit of a sense that I had to do it because they didn't know better, nor what else to do for me. I was given "options," but none of them involved anything less than months of toxic chemotherapy. And the drugs that do work, these PARP inhibitors, have been around for a while--I remember hearing about them soon after my diagnosis. They were discussed as promising for TNBC but because no clinical trials had been done en masse, they weren't even mentioned to me by doctors. And now, since I'm almost 2.5 years out, it's probably too late. I sit here, itching to pick up the phone and call my oncologist and demand some PARP right now! but I know that he would say something along the lines of "that is not the standard of care today" or "trials are still underway" or "that is all behind you now." But, of course, it isn't behind me. It's right here with me, all the time. And the same woman who wants to pick up that phone is terrified that it might ring, because she doesn't WANT more drugs, she loves how her body feels now, and she wants to just be left alone to her chances.

It's hard to feel so many things at once, all the time, when you're just trying to live your life. I'm so happy that they are figuring this out, that future generations of women will not have to take treatments that cannot possibly help them, and that hopefully fewer women will die from a disease that has been around forever, but that is woefully misunderstood. I think about my daughter, and I might almost weep from relief, if I were a different woman.

But I'm not, so I sit here dry-eyed and think about some of the absurdity. About taking poison for no reason. About staying skinny and exercising in order to stop the chaos in my mind and the jumpiness in my body, not to stave off cancer--because, again, there is no evidence that those things help stop recurrence for TNBC. About how hard it is, sometimes, to relate to people. Because every day I do something that few people do. I just cross my fingers before I shut my eyes to sleep, knowing that I will at least wake in the morning.

I cross my fingers for one more day and that small action is as likely as anything to give me more wakefulness. I live in this Kafka-esque world, where I know that everything I have done, except for surgery, was a best guess fix for a what if scenario for a nameless disease.

And yet, I'm glad I did it--all of it. I did my best with the information available to me at the time. I did what I could, and more than I would have liked. And my body, my hair, my fertility and my sexuality came back to me. For a time at least-- for now. Who can guess when our best things will be taken away? It is useless to dwell on the possibilities.

And so I cross my fingers and bust my ass and on my best days, you would never know. On other days, like today, I feel grateful and I feel betrayed, I feel happy and I feel devastated, I feel afraid and I feel that it is impossible that I might not get to grow old. So, I write this. And then I move on.

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.)

Day 844: The Puking Post

There comes a time in every woman's life when she realizes that it's not all giltz and glamour. For example, when she gets really frustrated driving through awful rush hour traffic with her children in the car on the way to pick her husband up from work so they can all get a jumpstart on the last vacation of the season. It's a gamble, really, because her three year old son had had a mysterious rash the day before that led to him being sent home from school, and her husband had taken him to the doctor, only to be told it was probably allergies, due to the melon they had thought he could eat after all but apparently…he could not. His entire body was covered in hives, but then, they went away, so on the family drove.

After that fight she got in with her husband due to the annoyance with traffic, the drive was smooth, albeit long. She decided to stop at an actual restaurant rather than the same Wisconsin fast food chain that the family always patronized solely due to their corporate policy of placing changing stations in the men's rooms. Oh the freedom of ordering from a menu while sitting down! And yet the three year old wouldn't eat--anything. He was out of control. She herded everyone back into the van, and soon he started crying, claiming "it hurts where I eat." So she stopped at a gas station, looked in his mouth, and his throat was red and inflamed, so she bought cough drops, which he wouldn't touch, and called the doctor, who thought he might have strep. So the next step was to try to find a Walgreens in Green Bay, so the poor kid could have antibiotics if he needed them, as the closest pharmacy to the lake house was 35 minutes away and closed on weekends, and they had gone too far to turn around and go home. Somehow the family found the place, and the prescription was miraculously there, but it took a long time to get it filled. As she waited at the counter, she turned around when she heard a familiar voice and there was her family. Why are they out of the car?! she asked her husband incredulously. Oh, they wanted to run around and stretch their legs, he said. Great, she thought, rolling her eyes.

And then, a few minutes later, her three year old started to vomit all over the store. Once in aisle 2, once on the way out the door, and again in the parking lot. Suddenly she was in full mom mode, telling the staff what happened and apologizing, glaring at her husband for bringing a sick kid into the store, taking her son over to the grass at the end of the parking lot in case he needed to puke again, ordering her husband to drive the van over, finding the pajamas she had packed and changing her son out of all of his dirty clothes, chucking the vomit-laden shoes (worn for the second time ever) into the trunk, strapping him back into the car after giving him some tylenol, and then, after all of that, just laughing and laughing.

She had to laugh, right? Because all of a sudden, that kid was fine. Singing, talking incessantly, making it hard to concentrate on the dark, dark road ahead. He never needed the antibiotics. That whole bizarre illness is just a mystery. A story now, one that this woman realizes can fit into the annals of puke stories that every woman at her stage in life should have. It can be added to so many others:

that time growing up when her entire family had the stomach flu, and a neighbor kindly brought over some dinner when they all started recovering, and that dinner was some greasy duck, and everyone started hurling again just looking at it.

that dorm party freshman year of college, when everyone had the bright idea to mix cheap vodka with fresca, and she bummed some cigarettes, and then quietly went into the coed bathroom, locked herself in a stall, threw everything up in a very confined way in the toilet, made sure no one would be able to tell, and then brushed her teeth, so she wouldn't be one of those entitled college kids who did disgusting things and then expected the janitorial staff to clean up the mess.

that valentine's day when she was 23, when her long-term boyfriend had planned to take her to the top of the Hancock building for the first time, to have a drink and go dancing. All their lives they had lived in this city, and neither of them had ever seen that view. And as fate would have it, they still wouldn't see it, because she started vomiting violently and frequently from some illness that came out of nowhere. She got sick 14 times in a span of four or five hours. Her boyfriend held her hair for her while she puked, made her jello, cleaned everything up. When her stomach began hurting so badly she couldn't stand, she called the ER, positive she had food poisoning, and they told her um…if you threw up that many times in that many hours, yes, your stomach will hurt. And she practically crawled back into bed, and her boyfriend tucked her in, and if in some universe that is romance, well, there it is.

The night before her college roommate's wedding in Los Angeles, when she was 27, when she went out on the town with one of the bridesmaids and another of her roommate's friends, to a bunch of different places in Little Tokyo. After having some sushi and saki, they ended up at a karaoke bar, where it became obvious that they weren't from around here. So the cute bartender kept sending over free drinks--huge, complicated, strong drinks. Fifteen free drinks between the three of them, one of whom had to drive back to the hotel. As she got increasingly drunk, this young woman who really didn't drink much at all got quieter and quieter. She began to realize why she wasn't much of a drinker, given that most people become more animated, not less, that most people don't just retreat into themselves at the height of their drunkenness. And she had the worst hangover the next morning, giving her another reason to be that girl who didn't drink that much. She got so sick that she became hungry for having nothing in her stomach, and she turned to that generous basket of food her friend's mother had left in the hotel room, and she ate oranges, the result of which was that she didn't eat oranges again for a very, very long time, because they didn't taste very good coming up.

The day when, at age 31, she experienced a replay of the original story here, and her entire family of three was laid out with the flu. As her daughter, nine or ten months old, recovered more quickly, she just began crawling over her sick parents who couldn't move from the floor. Mom or dad would get up only to go puke in the bathroom, and the baby would quietly go into the corner and look at a book, a portent of things to come.

That time, soon after she started her current job years ago, when she felt so sick at work that she knew she wouldn't make it home even if her boss gave her permission to leave. So she got sick in the employee bathroom, told her boss about it, and he said, ugh, just go, get out of here, and she rushed to her commuter train, hoping and hoping she would make it home before getting sick again. The motion of the train made things worse but she held on, bolted out the door at her stop, and puked all over the sidewalk. People walked around her in disgust. It was winter, and she had vomit in her hair and on her down coat and the wind was whipping it back into her face as she heaved. And she felt pretty damn alone in the world, until a woman walked up to her, quietly asked her if she was all right, and gingerly handed her some kleenex before walking away. And today, six years later, she can still recall that woman's face.

That other time when the family of three (four, actually, as she was pregnant with her son at the time), was driving up to this lake house, and it was the daughter who started puking in public, in one of those fast food restaurants previously mentioned, and the staff had to be alerted, and she continued to vomit in the car, but it was so dark in the north woods roads that she had to sit in the back and watch her while her husband drove, and they made it up to the house, but things didn't get better. Neither she nor her husband got sick, but her daughter was so miserable that they began to understand what "listless" meant, as she just sat there, mute, not moving. So they cut the vacation short, hoping to not ever go through something like that again.

And then those times, so many of them, when the thought of living one more second with that nausea was the worst thought in the world. Those times, at age 34 or 35, when vomiting was a relief. The time she got motion sickness just from making love to her husband, the other time when she ate her first normal meal in weeks and then felt so off-kilter she stuck her fingers down her throat and forced herself to throw up while her husband patted her bald head and told her it would be all right. That endless feeling of nausea, when just the smell of food warming in the kitchen sent her upstairs away from the family.

This story just became one more in the list, the one of the kid with the hives and sore throat puking in a random drugstore parking lot and then engaging her in a conversation about the color of his vomit, suddenly not sick anymore but more interested in the philosophical question of what does it mean if your throw up is blue? Well, it wasn't honey, it was red, and full of grapes. But what IF it was blue? but this time something was different. It was different because she knew it was a story right away, she knew to laugh at it, she knew not to worry or be disgusted or disappointed. She knew it was possible that they would all spend their entire vacation sick as dogs, but it wouldn't matter, because if that was going to happen, it might as well happen in a beautiful place during a time when no one had to go to work or go to school or even walk out the door once they got to the house in that remote, remote place. It didn't matter, because they would be together, having learned some things from the other stories.

And then this--the memory of this. As she waited for the prescription, before her child had arrived to defoul the pharmacy, a woman came up to the window, looking a little lost and embarrassed. She waited for a minute, for the other younger woman there to go away, apparently. She didn't leave, so this woman, in her late forties probably, a few cans of pop in her cart, asked the pharmacist: "Do you have anything for hot flashes?" And somehow, the pharmacist, a woman herself, couldn't help. They started joking, and she said, well dump yourself in a bucket of ice? haha, well obviously this woman has never had hot flashes or she would know that shit isn't funny, and then she suggested black cohosh, and the younger woman found herself nodding her head, knowing that was suggested, though it never had worked for her. After a minute of listening to this conversation, the younger woman turned to the other woman and told her they made something called i-Cool, and though it might not work for her, it was worth a try. The older woman looked confused, like, why does she know that? And the pharmacist couldn't help her locate it.

And then the kids came in, and the next vomit story commenced, but not before this happened. After her son got sick in the store the second time, she knew she should just rush him out the door. But she saw the other woman still looking lost and miserable, so she handed her son to her husband and told him to take him outside, she would be just a minute. And she went to the area of the store where they have the stuff for hot flashes, because she knew just where it would be. She grabbed the box, went over to the other woman, and put it in her hand. This woman looked at her with such shock that she felt she should explain: "Look I went through menopause from chemo. Maybe this will help you." And the woman just looked at her, not knowing what to say, so she said "Oh, wow, thanks. Thank you!"

And then, that story became that other story. The one she told her husband once they were back on the road, kids clean and happy again, and he laughed and high fived her, and told her she had done her part. That one.

Day 813: Don't Think Twice, it's All Right

So I think I'm going to be OK.

How is that for an understated, casual opening line?

I mean, I don't have a heart condition. And, I don't think I have lung mets.

Can I get an AMEN?

Those issues I was having literally scared the shit out of me. It was not in my mind, and now I think I have an inkling of an understanding of what was really happening--but I'll get to that later. When my blood pressure shot up to 143/80, I was convinced my heart was having trouble. And no, it's not because I'm a hypochondriac. It's because I had radiation over my heart AFTER taking this heart-terrorizing medication affectionately known as either the Red Devil or the Red Death, because while it looks like cherry Koolaid in that syringe, when they push adriamicin into your body, you literally feel the coldness of something approaching death course through your veins, and the nurse looks at you to make sure you're still breathing, and then they do that shit to you again and again. So, you know, I wasn't nuts for worrying.

But when I saw that blood pressure reading, I said, screw this. If they want to put me on those damn beta blockers again I'm not doing it. I hated those. So I made a bunch of changes to my already healthy lifestyle. I love coffee, but I don't drink very much. At home I make it half-decaf and I pour it out as soon as it gets lukewarm. A few days a week I was going to starbucks for iced coffee, no sugar or milk, and since that's mostly ice, it didn't seem like a big deal. I was having one drink every night to help me relax. While we were up north, I was making "up north dinner," or crockpot dinners that could last us three nights and not necessitate going to the grocery store, which was really far away. Things like vegetarian chili made with canned beans. Chicken-rice stew/soup made with those packaged rice things. Homemade pizza. I don't eat a lot, but I do eat like a real person. I'm no "salad's enough for me" girl.

This crap was terrifying me so I just stopped. Cut out caffeine, stopped drinking, started looking closely at sodium content and getting annoyed at how much sodium there is in everything. Even if you give up bread, it's bad. How do low carb folks do it? Dairy products are the WORST with sodium. For a while I was overdoing it and basically eating fruit for dinner, spinach salad for lunch at work. I continued my same workout routine. I was HUNGRY.

And I felt better. I scheduled an acupuncture appointment for the first time in a year and a half, and that made me feel even better. My last memories of acupuncture are positive, but I was never truly comfortable when I was doing it. The first time, I was just suffering terribly from chemo. Even when I was done with treatment, I was in menopause, having hot flashes while lying on the table with needles sticking up out of my translucent newly-grown hair. My scar tissue pain made it difficult to lie comfortably. I always stayed for the minimum 25 minutes and got out of there. She expected me to do the same this time. When she came to get me, I sent her away. I am lying here with nothing to do and nothing to think about and I'M NOT LEAVING! She laughed at me, gave me as long as I wanted. I am naturally restless, so I made it about 45 minutes--a record.

I went in for the heart tests on Monday. It was 100 degrees and due to the scheduling, I needed to take the whole day off of work for the appointments, so I drove down to the hospital. The ecchocardiogram was painless, and relatively interesting. I had one done when I was admitted to the hospital for heart problems due to Taxol but that whole weekend was so difficult I don't remember much of what the tests were like--even though I will never forget the kindness of that one doctor. An eccho is basically an ultrasound of your heart. The technician showed me everything--this is your pulmonary artery, that sound you are hearing is the blood pumping, those colors mark different arteries. It looked and sounded just like those early ultrasounds you see of your fetus in the womb. I asked if she could give me results, and she said: "I can only tell you if something life threatening shows up, that would make me concerned you were about to have heart failure. Barring that, the physician needs to read it."

She sent me on my way. I went to get the Holter monitor. That was fast--leads and wires taped all over my torso after she literally used pumice on my skin to rub it raw and make sure they would stick. I had this bulging monitor on, tape up to my chin, and I was wearing short shorts and a tanktop. Oh well, that's one of the benefits of living in a place like Chicago. You walk around the Mag Mile like that, going shopping, and the androgynous employees at Zara just look at you with utter boredom in their eyes, and people texting on their phones almost run you down because they are paying so little attention to anything outside of themselves, and no one gives a shit, because there are much stranger things happening.

And then, I waited.

Tuesday evening I got an email message from my general physician. Your Eccho is normal.

Late in the afternoon yesterday, prompted by my email asking her for results, I got another message: Your Holter results were normal, even during the one indicated time when you felt your heart racing.

I had been given a diary, wherein I was supposed to write my symptoms if I experienced them. Shortly after eating an Mburger for lunch around 1 pm, as I was STARVING, my heart started racing. I recorded it. I drove home, laid down, read a book about typhus destroying Napoleon's grand army in 1812 because that's the kind of thing that puts my issues into the grander perspective, and it was still racing.

Salt from the burger. Dehydration. My heart is fine--but there is something odd going on, and I think I now know what it is. I was thinking about this on Tuesday, when I finally got to take the tape and leads off around noon. I locked the door to my office, and thought I could just casually remove them. Wrong. It was like the smooth-chested female version of the 40 year old virgin up in here. Taking that shit off HURT. I still have red marks from it. I told Gabe he'd better keep his heart healthy so he never needs to have one of those monitors put on his hairy chest.

Jesus.

Water retention. In the eccho room, they took my blood pressure. Twice. It was 105/60. I was more nervous on Monday by a large margin than I was when my BP read high, so don't tell me that high reading was stress-related. I was also newly addicted to drinking water. For the 10 days or so that I've been on this experiment, my weight has not fluctuated much. I weighed 116.5 this morning. At night, I usually weigh about 118. When I was having the heart and breathing issues, I would sometimes weigh as much as 121 and I would complain about how fat I felt, how bloated I was. We make light of these issues as a society, even our husbands roll their eyes at us. We fail to recognize that what presents as vanity might actually be a real, honest to God PROBLEM. And like so many things, we trivialize it, sweep it under the rug, focus on the wrong thing--the "fat" days, when there's water pressing on your heart and lungs, the tits, when there's cancer trying to kill you. Well, no more. Some of us breast cancer ladies are getting testy enough to make our OWN shirts. Save second base? Really?

Water retention. In an extreme form. Water retention so bad, it put pressure on my heart and made it hard to breathe. Water retention that was worse at certain points in my cycle, but never absent. Yes, I realize that I'm self-diagnosing. But until I keel over, I'm going to make the unheard of assumption that I understand my body, perhaps better than anyone else. And my body has changed. The thing is, when your body changes drastically AFTER having some minor issues like CANCER, it can be hard to correctly place the problem and not sit around thinking about what your kids will look like when they're grown up and you're dead. Just saying.

Yesterday, I got myself an iced coffee for the first time in almost 2 weeks because it was so damn hot even at 5:30 in the morning while I was taking my walk. I drank two thirds of it but it took me a few hours. I got up from my desk to go to the bathroom, and I had one of these surreal post-cancer moments. I sat there--me, of the iron bladder, the woman who used to be able, even AFTER having kids, to go 7 hours without using the bathroom--for what must have been three full minutes, peeing. I mean seriously. Folks who came in after me were leaving and I was still taking a piss. My body was telling me, look lady, you're retaining too much of this shit. There's one more vice you just can't have.

Goddamn chemo-induced menopause leading me into a second puberty bullshit.

I got my first period at age 11. I went on the pill at age 18 and went off at age 29. I had my first child at 30 and my second at 33. I never, at any stage, had PMS symptoms. Heavy bleeding, vomiting, yeah I had that. But bloating? Depression? NEVER. And now I have days of the month where I get so down I literally feel almost worthless. I think, I am going to lose my job because I'm no good at it. My kids hate me. I don't have any friends. WHOA! KatydidNOT ever feel that way before these hormones blew up. Never.

Until now.

If I was 20, I wouldn't think about it. At my age, it's hard to believe my hormones could take me for this kind of ride. But there it is. I've been feeling like a rockstar at spinning, still a little out of breath, but better. And it's been 9 million degrees in Chicago and the air quality is horrible so that's not a huge shock. But here's the thing.

If you have lung mets, your symptoms don't get better. They might start out mild or barely noticeable and stay that way, but they don't get BETTER.

So screw that chest x-ray man. Just give me 47 bottles of water and I'm good.

Not just good but GREAT. I feel skinnier, more like myself. I won't throw out the order, but come September, I just don't think I'm doing the chest xray. Now, some of you will think I should get the xray anyway. Other survivors have said, now if it was ME and I had a chest xray order I couldn't get there fast enough! But you know what? I've had more radiation than any human being should ever have in her life and I don't need any more just in case radiation, any more my God I'm going out of my mind until I get those results, tests. I mean, I feel pretty damn good.

Last night it was 103 degrees and extremely humid at 6 pm. So of course, while the kids were at gymnastics, I went spinning. And I felt awesome. I drank two bottles of water in 45 minutes. I had to pee the second I got off the bike. BUT. The last song, during the stretch, was Purple Rain. And there I was AGAIN, tearing up in the gym, this time with happiness, passing it off as sweat as I realized that my heart is ok, my lungs are probably ok, there's something going on in my chest that might necessitate an xray, since it hurts so much, is so tender that if Gabe tries to touch that breast tears sometimes come to my eyes and if I push on the left side of my sternum I wince, but THAT IS NOT CANCER. Ruined pec or cracked bones from radiation, maybe.

But it's not cancer. Cancer doesn't present like that.

So there I was, flying on the bike in the sweaty gym, wearing a bright blue bandana on my head that I bought at the wig shop when I had my head shaved two years ago. Suddenly I had this image of myself when I was 25, wearing this mod dress, showing up at night at class in graudate school after I got off of a full day's work. Another student told me I reminded him of Mary Tyler Moore. I thanked him, though that hadn't been my goal.

Maybe it should have been. I lived in Minnesota for years. And you know what?

I think I'm gonna make it after all.