Friday, August 30, 2013

Day 1,164: Cancervert

It's interesting to me that I seemed to write here more often before my recurrence, when presumably I would have had less to say. I guess the difference is that at that point, I could use this forum to pontificate about a variety of things, using cancer in some ways as a catalyst, an excuse to give me permission to talk about some aspect of gender or memory or life that I would have liked to write about anyway.

And now?

I'm tired.

When I was doing ACT chemo, which is honestly one of the harshest chemo regimens anyone can do, I never had fatigue. My body would threaten to give out and just stop when I was walking or exercising or something, but I never felt fatigued. People think that this means that you are just tired. That doesn't come close to explaining it. Today in particular, when I thought I would be coming out of my immunity nadir as I am at day 16 of the 28 day chemo cycle, I just feel completely wiped out.

I feel so conflicted about chemo this time. I'm not emotional about it like I was before, I'm not actively pissed off and fighting the very notion of everything that is happening to me like I was in 2010. And yet, I find myself wondering if it's worth it, and I think about quitting, though not too seriously. This chemo regimen has been so much easier in many ways. I feel much more human. And's chemo, you know? It isn't fun to feel exhausted, to have chronic diarrhea, and it is especially not fun to have one of the side effects I was dreading the most.

My period has already stopped, my libido has tanked, and my sex life has already changed.

I don't have hot flashes. I don't think I'm in menopause. But the chemical changes have happened so quickly it's almost shocking. I could literally FEEL it happening, deep in my pelvis. It's hard to explain. I used to think about sex all the time, and now I hardly ever do. That whole multiple-orgasms, no foreplay needed thing that has defined my sexuality for more than 20 years? Gone. Do we still have a normal sex life, by most definitions? Sure. Do I probably still enjoy sex more than many women do, in their natural state? Yes. I mean, we probably have sex more than most people. I'm married to someone who would do anything I wanted, who would never complain about things being different or about needing to change the routine, who would always think about me first when we're in bed.

But I just turned 38, and that is on the one hand way too young for this, and on the other, it is too old--I am that much closer to 40 than I was three years ago, that much closer to the possibility of this being permanent. I was very, very lucky to come out of menopause the way I did in 2011; my body reverted to that of a teenager for years, with incredibly regular cycles and a high sex drive and everything that makes you feel 18. So I lost it, gained it back, and lost it again, just as I was afraid I would. It's depressing.

When I went into chemo-induced menopause before, it was the most depressing aspect of cancer treatment for me. I was angrier about that than I was about losing my famous hair. To me, hair was really cosmetic. Sexuality was so much more of an innate part of myself, something that mattered in a way that hair and normal looking breasts did not. One of the hardest aspects of that was how few people really paid attention to my concerns. If I had been a man, going through chemo-induced impotence, folks would have been falling all over themselves in an attempt to help me. It's one thing to have experienced my sex life over the last few decades as if I were a 20 year old man; it's another thing to not BE a 20 year old man, so my issues in this regard are considered almost irrelevant.

But I've gone over this before--I said all of this in one of the blog posts that I'm proudest of having written. I don't need to say it all again.

Apparently, though, I need to experience it all again, maybe forever this time.

So, this is hard. Next week I will be getting on an airplane to spend the majority of the week in the state where my new job is based, and all of that just seems absurd to me. For years now, I have just kept living life, whatever that meant, and I will continue to do so, but it does make me wish that I could whip out that so-called cancer card and just say, look people, this shit is serious! Let's slow down and take a deep breath, ok? Manage your expectations. I'm no superhero. I get crabby.

But that card doesn't actually exist. It would be awesome if those of us going through cancer treatment actually got to be Cancer girls or Cancer boys in real life. I've been thinking about this in the context of the seeming obsession with personality types and people getting all up in arms about who is better, the introvert or the extrovert, and basically claiming that whatever personality type they think they exhibit is the better one. You know, I'm an extrovert, so I'm more fun and people like me. Or, I'm an introvert so I'm thoughtful and deep. Whatever happened to just people? Do you see how kids essentially ignore each other's innate personalities and go on with their bad selves? My daughter was on a playdate a few weeks ago, and she got really quiet and shy around this friend of hers and didn't talk much at first. She always does this. It takes her a while to warm up, and then she's fine. But in the meantime, the other girl just kept gabbing and running around and they both basically let each other be. There was no concept of well damn, this just won't WORK. We cannot POSSIBLY jump rope together because you're too shy and awkward or you're too loud and crazy.

I like all the people, you know? It's the eccentricities that make people interesting, that make people worth hanging out with, talking to, sleeping with, or what have you. So that's my take on that issue. My wish is, what if I could just ignore the idea of being an introvert or an extrovert, and for even just one day, be a...


I mean, people seem to be using this idea of personality type to justify shitty behavior, like ignoring others, wanting to grab all the attention, being cocky, and acting superior.

So what about if I could just say...:

Oh hell no, I'm not dealing with this petty "meeting" shit...because I have CANCER.

I'm not going to smile and shrug off my problems because I have CANCER.

I will never again pick up other people's shit, especially their shoes and dirty clothes, because I have CANCER.

You children will not fight about who has watched more episodes of Wonder Woman because you are being ridiculous and I have CANCER, kiddos.

No, you are not allowed to hit on me or say inappropriate things about me or catcall me because I HAVE CANCER, ASSHOLE.

You get the idea.

No one in real life gets to say these things. On the other hand, I guess to some extent, I've claimed some little bit of Cancervert. I am dictating the terms of how this is going to go at my new job; I need to do this, because I am the one who has some sense of what to expect and what I can do. I've worked through worse, after all. I have been sleeping in while I still can (as in, sleeping until 6:30), hiring babysitters just so I can go to the gym, spending too much money going out to dinner with my husband, telling people they should bring food to my birthday party because I'm not going to make much of anything (and then baking anyway because I couldn't help myself), and passing off household decision making onto Gabe. But in general, life just keeps happening, and the world just keeps spinning, even when your very body, your cells, blood, GI system, reproductive organs and so much else is fundamentally altered.

I am the same and I am different, I'm fatigued and I'm really active, I'm young and I'm old, I'm happy, content, pissed off and sad, I have had cancer two times and that doesn't seem so interesting anymore. I guess I'll just keep going on with my bad self, because I'm not sure what the hell else I'm supposed to do.

Thursday, August 22, 2013

Day 1,156: KatyDid 38

Anyone who has read this blog has seen the "about me" section wherein I say that I "spend a decent amount of time hoping to make it to 40."

True that.

Well, I can say officially that I've made it to 38. At 34, I wasn't so sure about that one. On my 35th birthday, I had just finished my final round of AC chemo and I was bald and skinny and in the beginning stage of menopause and it sucked but it didn't, because it was just this situation involving suffering and fear, but sometimes life is like that. Back then, I didn't know what lay ahead, but I sure as hell hoped it wouldn't be this.

However, this blog stands as a testament to the fact that I have always known that it could be this. And it could be worse. I never celebrated a single cancer-related milestone without feeling suspicious and ambivalent about it, which should not take away from the feelings of elation when I was (falsely) declared NED. After all, if a tree falls in the forest and no one is there to hear it fall, what really happened? If you have cancer in your body and no one can see it, no one can find it, does it matter that it's there?

I've said recently that there is no reason that a person can't be both irreverent and deep. It is also true that there is no reason that a person can't be both happy and in the middle of a bunch of bullshit. So many people have wished me a happy birthday today, and I know that many of them wonder how happy it can be, considering that I just did chemo yesterday. It's gloomy and rainy today and I'm by myself in my house and I feel kind of crappy but not too bad, but this birthday has been a fine one.

I haven't written about chemo, I realize. I'm not that interested in writing about it. I have finished one complete round of it, two infusions a week apart. The first time I felt like I had a terrible hangover for at least three days. This time, I told the nurse to cut down on the Zofran (anti nausea med given via IV pre chemo) as I thought that was half my problem. She halved the dosage and I felt more nauseous yesterday, but much better today; no headache, no haziness. Both times I have lost two or three pounds in one or two days, more from dehydration/lack of appetite than from actual sickness. All of it has been doable.

Yesterday, my mom and a close friend from high school sat through chemo with me, and I had these moments of intense nervousness. I had my blood drawn to see if my numbers were well enough to receive treatment, and then I was sent to the chemo chair, and then I waited. And waited. And kept waiting. And I saw my chemo nurse speaking softly on the phone and looking concerned. I saw her get out a little box that I recognized so well--a Neulasta shot. And I thought, you've got to be kidding me. My numbers have already tanked. I'm not going to be able to do this. She doesn't know how to tell me. And also, oh God, what have I done?

It turned out that a machine broke and they had to send my bloodwork to some other lab and it took a while. My numbers were "perfect," according to the nurse. I asked for a printout, as I always did before, so I could see for myself. I told her I saw the Neulasta and thought it was for me and she laughed hysterically. I also told her that I had been convinced that I had mouth sores already because my mouth was killing me and I couldn't eat and everything was all chewed up and cleared up and I realized I had just burned my mouth on some artichoke dip like a normal person. We all sat there joking and telling stories. Somehow my friend and I got in this conversation about being part of the AIDS generation and that didn't even seem weird or out of place.

My mom drove me home and made biscuits. My husband and kids walked in the door and my son continued to act like a little crazy person and get in trouble every five minutes. Then he calmed down and we sent him to our bedroom to watch a Rudolph the Red Nosed Reindeer movie, while my daughter read quietly in her room and Gabe cleaned up after their dinner. And I got really, really tired, all of a sudden. So I brushed my teeth with chemo-lady toothpaste and used chemo-lady mouthwash and laid down in bed with my son. He said "you can lay here mom, I don't care." I put my arm around him while he finished the movie. I was asleep by 9 PM.

Today I have done a lot of nothing. I'm taking advantage of this, because next time I do chemo I will have just started my new job, and I won't be able to just do nothing the next day. I do not feel sad, or upset or depressed or fatalistic or anything. I also do not feel assured of kicking cancer's ass or anything like that. This just is what it is. I've spent two birthdays in my 30s doing this. This time, it's a lot more manageable, both physically (especially after my 6 sessions of physical therapy! that scar tissue breaking up stuff is a Godsend) and mentally.

This recurrence has hit other people harder than it has hit me. My mom feels this way. She tells me over and again that she doesn't know how I do this, how I will do this and live with the unknown for the next year or years or whatever it is. And I say that I have done it before, and so it's not so hard now. There is one way to explain this--let me try.

It is hard to imagine, unless you have been there yourself, how it feels to be grateful to be healthy enough to receive chemotherapy. The wait to get your numbers is nerve-wracking. On the one hand, that is because you want to get this shit over with, but on the other, it is because those numbers are real and stand for things that are important. The knowledge that you could feel absolutely fine, save the side effects of chemo, and yet your white blood cell count or something else is putting you one foot into the grave, is a very, very scary thing. It reminds you that so much of what happens in your body is unseen and out of your control. It reminds you of cancer. So if the numbers are bad, it is completely devastating. And if they are good, you feel oddly triumphant, as I did yesterday, especially because I did not take one iota of post-chemo medication. You give yourself credit for something that you shouldn't give yourself credit for, because there's not much else you can claim.

And that's how I deal with cancer, and all the unknowns, especially now. I just know that something could be happening that I cannot see, and I choose to look at something else. I choose to claim other triumphs. And then, there is my secret, that weapon I have.

I have cancer. I'm the one who has had three breast surgeries, 2 months of radiation, and will have done 20 infusions of chemo over 10 months when all is said and done. I have experienced the side effects, including the long term ones. I'm the one who might not live to see my kids grow up, I'm the one who is standing here with a gun at my head wondering if it's going to go off when I least expect it. So of course it is me that has physically experienced cancer. But in my life? I hardly experience cancer at all.

This is where I do cancer.

That's the title of the thing, right? KatyDid Cancer. Not KatyDidMotherhood or KatyDidWork or KatydidSex or KatydidLife. I put cancer in its place here, so that I can go into my life and just do something else.

Cancer is a part of things over here. It's a big part and it's not. We don't talk about it that much, not really. The other night Gabe and I were driving north to go out to dinner before a Cubs game. I got quiet and pensive for a minute, after almost nonstop talking about stuff which is my normal M.O. He asked me in an almost fearful voice what I was thinking about. I looked at him and said,

"What's your favorite Chicago street name? I think mine is South Water. Because there is no North Water." And he smiled at me and thought about it for a minute and kept driving.

Tuesday, August 13, 2013

Day 1,147: What Do You Dream About?

When you dream, what do you dream about?

Normally, my answer to this question is almost absurdly pedestrian. I dream about things like getting up and eating breakfast in the morning. I’ve always figured that I do enough daydreaming during the day that my subconscious feels satisfied by the time my crazy manic body finally falls asleep for that five hours each night.

But then something like this happens, and even your dreams change.

Last night I had what will probably be my last drink for the next six months—my favorite, Katy-recipe gin toddy. Gabe and I had some fun together, and then I fell asleep quickly, without even having to read or watch TV to distract myself. I was even able to sleep for a few minutes on my preferred left side, in spite of how alien this implant feels to me, what with the port (it’s an “adjustable” implant so they can pump saline in or out of it without having to do surgery) sticking up out of my skin. As usual, I woke up every 90 minutes or so, and at one point I woke up with a start, shocked by what had just happened, wondering whether or not it was real.

I dreamt that my son had impregnated his college girlfriend.

This dream was a very Katy-style dream, in many ways. It absolutely could have been a scene from an actual life; there was nothing surreal about it. And in the dream, Augie was talking to me. It was as if he was sitting in front of a video camera, but the camera was actually me, and I could not see myself. He was 19 years old. Of course, he didn’t say that to me, because who walks around saying, hey, I’m 19 years old? But I knew that he was that age. He was saying that he was sorry this happened but it was an accident. He paused and said he wasn’t really sorry, because he had loved Keisha ever since the fifth grade. And though he did not describe it, suddenly these images flashed in front of the “camera” in my dream, of these two kids going to grade school together and then going to different high schools and then finally going to their senior prom together and dating after all that time and ending up at the same college. And I said nothing to him, though I was thinking that I wasn’t sorry either.

He said that he would figure it out, figure out what to do, and that he would get a job and finish school and everything would be fine. And then he walked away, all six feet of him and wild red hair.

And I woke up with a start, not sure whether to laugh or cry. I mean, this could absolutely happen with Augie. The real issue might be getting him to college first. This dream must seem so obvious, I know. I am dreaming that I will live to see my kids grow up and take care of themselves, that I will live to have grandchildren. But that is not exactly what it means.

When I woke, I began to think about Gabe’s grandmother, who raised him for the first six years of his life. When we met, Gabe was living with her, helping to care for her; she had Parkinson’s and had been in a car accident as well. She died less than a week before I finished cancer treatment the first time. She lived to see both of her great-grandchildren be born. When we would visit towards the end of her life, in the house she had lived in for decades which was covered with photographs of Gabe as a child, she had begun to have dementia. She would talk about people who were dead, people she hadn’t seen in years and years, as if they were right there in the room. I knew enough of this type of thing to do what needed to be done, and I would just talk to her about them, and ask questions about what they were doing. One day while Gabe and the kids were somewhere else in the house, she stopped in the middle of one of these tales and grabbed my arm. I still had hair at that time, so it must have been right before my diagnosis. She looked at me and said “I’m glad he found you. Now you can take care of him.”

Of course, he can take care of himself, but that’s not the point. He was still five years old to her. After she died and we bought this house, we inherited some of her dining room furniture. Gabe, who is always so sentimental, cried, and said how pleased his grandmother would be to see her furniture there, in this house on her favorite street in the neighborhood she had always admired. He said that he wasn’t sure there was anything else left to achieve from that perspective; he had done everything she would have wanted him to do.

That’s what I was dreaming about—not witnessing my children’s futures, but imagining that I have already lived long enough to see the seeds of those futures, and that I have had time to tell them what I wish for them. My kids are so young that it is likely that everything that is happening with them right now will be forgotten, at least by them. I have been through too much to imagine living to meet my son’s college girlfriend if he had just met her (notice I was not technically in the dream; all parents know that their children can always speak to them, even if they are dead). I was dreaming of a scenario in which I could have possibly already met her, because he fell in love with her when he was 10, and probably met her when he was 5, and I could feasibly live that long.

Oh, what a selfish beast love is.

We want so badly to believe that we will take part in some of this, that our lives will intersect with the lives of the people we love so fiercely, that we will be able to bear witness.

My son is 4 years old. He is not old enough for me to voice my dreams for him in any way that he could or should be able to understand, even when those dreams are strange and imperfect and take into account his irrepressible personality that is both his greatest strength and the thing that keeps us up at night wondering what the hell to do. My job now is not to be some deep cancer-mother telling him about life and the future, though he will bring up the subject of death at the dinner table as casually as other children ask for more milk. My job now is to tell him to calm down and to put his own damn socks on and to try and read a few of those words because I know he can do it.

Sometimes, that is what you dream about—not that you will live to sit back comfortably with the knowledge that everyone is grown and fine, but rather that you will live long enough to be able to tell people what you dream of, and that years later when important things happen in their lives, they will remember. And they will be able to say, look mom, everything is going to be fine. Even if you aren’t here.

Sunday, August 11, 2013

Day 1,145: Perfectly Imperfect

Damn, cancer takes up a lot of time.

In the past month, I have gone to a doctor's office or hospital for a test, procedure, surgery, consultation, physical therapy or something else on 14 separate days. Even though I have recovered almost absurdly fast from surgery--save the fact that I had to have a bunch of necrotic flesh scooped out and the incision site re-stitched 3 days ago (yes, you read that correctly)--it's a damn good thing I've been on leave from work, because honestly?

I haven't had time for much lately.

After running around and driving myself all over creation in order to get to all these appointments, I have been: taking an hour long walk every day, going to the grocery store, cooking for my family, doing laundry, shopping for the kids' back to school stuff, reading uplifting books about rabies and the Irish potato famine, having sex while I still have the energy, getting used to this weird Frankenboob, trying not to lose whatever I had left of my normal body (what happened to those biceps? what happened to those I had babies but look I still have them abs? three weeks, people? that's all it takes for it to start to go to hell?) by doing weird modifications of the exercise that used to be such a big part of my routine (one armed planks, spinning but sitting in the saddle almost the whole time, lifting 2 or 5 pounds so as not to rip my stitches out) and completely forgetting to call, email, and text the people who have contacted me because I've just been so busy with cancer and life and the attempt to reconcile the two.

I've been too busy to write anything here, and I realize that that is a problem, not for me, necessarily, but for some of you. I know that people go here to find out what is happening with me, that people who aren't connected to me on facebook rely on this forum in order to learn what decisions I've made regarding my treatment, that even people who are closest to me in my real, non-virtual life count on the blog for information. And yet, I have always said that this blog has had an odd impact on my life. People often think that they know what is going on with me because of this forum; people read about some intimate aspects of my life and might feel that they therefore know me intimately. That is just the nature of the beast; that is the natural outcropping of a life partly revealed in the cloud. Anyone who does this for any reason deals with that to some extent.

There are a variety of things that make this different for me. One is that I am writing about something that scares people and makes them sad. This is especially true now that people thought I should have been done writing about it; my recurrence has definitely upped the ante. Another is that I am a fairly even-keeled person who likes to watch stupid action movies and talk about nonsense and play catch, and then...I write this. And sometimes, people do not know how to reconcile what they read here with who I am in person.

When I began writing this years ago, something interesting happened. Some of the people who most appreciated this blog were those I knew when I was a child, or a teenager. Women and men I had not seen since they were girls and boys would write to me, telling me that they felt guilty saying this, but that they ENJOYED my blog, that it made them feel that something must still be right in the universe with me because by reading this blog they could tell that I was still ME. One woman wrote to me and said she loved reading it because she could imagine the sound of my voice reading it to her, and she felt like she was talking to me, and it comforted her. These were all people who knew me as the nerdy, irreverent, not very girly goofball I had always been--the one who wrote deep poetry and won all the writing awards. There was no contradiction there--in fact, this was just so KATY. This is the same reaction I've had from people who know me BECAUSE of this (other bloggers, for example) as well as from people I met in college, graduate school, or some other place that lends itself to philosophical musings, which, let's face it, responsible adult life does not.

And yet, this blog has also kind of...isolated me, especially from people who have come to know me as an adult, through work, because of kids, or what have you. I know that sometimes people read this and think my God, what has happened to Katy? What happened to that woman who can casually talk shit about anything...where did she go? This weekend, we had a very nice visit from one of Gabe's best friends from college and his family. A few hours after they arrived, he told us that he had been worried about intruding on us. He said that within five minutes of being here, he had to ask himself what the hell he was thinking. After reading the blog, he assumed we would all be sitting here dressed in black or something, and what actually happened was that we ate deep dish pizza and our boys all ran around together and I sat there talking to his wife who is a teacher about how ridiculous teenage boys are.

Things are almost indescribably normal around here, deep blog posts aside. It's like cancer lives in another house, and I am telling its story.

I can't remember the last time I cried about cancer, or felt emotional about this pile of bullshit that has landed on us over here. I stopped covering up my disfigured chest within a week of surgery and I went out in public with a bikini on within ten days. I made a decision to do six months of what will hopefully be a less-toxic chemo regimen, knowing that all kinds of people had opinions about that decision, in the same way that others decide whether or not to buy that used car.

So maybe cancer does live in another house, and maybe that is what I have been trying to say all along. Cancer is a real scourge. For some, it is a death sentence. It is terrifying for everyone, and everyone who has it has to suffer, because that's the price you pay for trying to survive cancer. Cancer--and the treatments for it--can and usually does permanently alter your life, and not just metaphorically, but physically, actually, truthfully.

But do you know what cancer is not?

It is not a war. It is not a battle. How could it be, when for those of us who live with it, it is us? Cancer is a part of us--a part that went wrong. And it is possible to isolate that part from the rest of yourself, and hold on to what remains. It is possible to occupy two houses at once.

This recurrence tells me that realistically, I have probably had cancer in some form, at least on the microscopic level, for the last six or seven years. I have probably spent my thirties with cancer in my body, almost all the time. And you know what?

My life in my thirties has not just been has been great. I have had children and learned how to have a truly happy marriage and I have stuck my claim in this odd and cerebral career path of mine and I have bought my dream house and a lot of other wonderful things have transpired. Nothing about the cancer part has been good--I will go on the record saying that if I could, I would trade--I would trade in an instant.

But as I said when I wrote of my recurrence for the first time, not everyone is meant to be healthy. Not everyone has a body that works perfectly. That does not mean that we feel that our lives are less worth living until they begin working perfectly again. There are a hell of a lot of people who just learn how to live with imperfection, modifications, and the possibility of death right around the corner. Two years after I had my head shaved during chemo, I wrote this, and it is still true:

But I've learned some things. One is that courage is beside the point. There's nothing else to do but do things anyway. Sometimes you are afraid, and sometimes you are not. Sometimes you have hair, or legs that walk, or a highly-functioning heart, or lungs that take in air easily, or cells that follow the rules. And sometimes you don't.

Here's to doing stuff anyway.

That's it--that's what makes it possible for a person like me to write something like this. All of these different aspects of ourselves can co-exist; there is no reason a person can't be both irreverent and deep, and there is no reason a person can't have cancer and be extraordinarily healthy in all other respects at the same time. I am the person, after all, who learned how to do this a long, long time ago. I had a scary, potentially deadly condition that necessitated me taking medication that had significant short and long-term side effects. And you know what?

I just had it--I had epilepsy. That's just how it was. No one was waiting for me to get better. No one who knew me then ever thought I would be free of it. No one looked at me with sadness or treated me differently or told me to kick epilepsy's ass or said it wouldn't have happened if I had just eaten more kale or reconsidered befriending me or felt inspired by my struggle or said well damn, you're still sexy for a girl whose brain misfires all the time. The fact of my epilepsy was both isolated from the fact of the rest of me and an intrinsic part of who I was. I have written about this before, about how important that was for me in my youth, the way everyone just accepted me. It helped me do what I needed to do, which was live the life that was presented to me, not the one I might have wished for otherwise.

I really wish I could say that I was free of cancer, but I have no idea if that's true. I know for a fact that I have been living with it for a long time. I still have the albatross of the possibility of mets hanging around my neck. I still don't know if I will live to see my kids reach their maturity. And one of the things that I was most afraid of has happened, and that has freed me of the fear of fear. I am not even overly concerned about handing my arm over for my first of 12 chemo infusions this coming Wednesday, not even when it's possible that my new incisions might not have healed. Perhaps I should be worried, but I'm not; I am truly resigned to what has happened and the fact that I can't know what will happen next.

And so, I do this, with some knowledge of how to do this because I have done this before. And by "this," I mean everything--what I have to do to treat my cancer, and what I have to do to hold on to myself.

I wrote this approximately three years ago. But those who know me best know that I have always been writing this. And this too.

Reading a Poem in the Oncologist’s Office
by Katy Jacob

The poet had written maestro,
But I read it as metastasis.

It’s possible he meant master,
But why not change in form, spread of disease?

They fall off the tongue like close cousins.
Perhaps music and suffering are not so far apart.

You might say that my mind plays tricks.
I’d ask you if death is not lurking behind our other words.

Life can be like that now;
Normal is a double-take into a dark place.

If someone says beautiful or brave
I know they really mean interesting or terrifying.

Poets could learn something
From this total loss of control.

How a thing starts is not how it ends.
Your intentions and your meaning are not the same.

Besides, who would question my interest in definitions?
Who would blame me for always reading the last line first?

Friday, August 2, 2013

Day 1,136: Rolling the Dice

I've never been a gambler. I find it boring, actually. I've gone to casinos in Vegas, in San Juan, on reservations in the north woods of Wisconsin. The disparity in glamor and atmosphere at these places has never masked the overall feeling of tedium that I personally feel when I walk through the door. I like the people watching, and I love to play cards, but if I lose at blackjack, hey, I lost. I don't even consider the high I would supposedly feel from winning, because I figure the house always wins, so I just move on, wishing there was something else to do. Oh look, I just lost some money in the slot machine. That wasn't fun. Want to go get dinner?

And now, my life has turned into a gamble, and it still feels tedious, and I'm still pretty sure the house always wins, and unfortunately, I'm not the house. I'm the guy standing in the corner trying in vain to get some quick cash so I can chase an impossible dream because I really wish my life had turned out differently.

I received my pathology report from my surgeon on Tuesday. Tuesday was the crying day for me, therefore. Or I guess I should say it was filled with short crying moments. Yes, there was good news. All of my lymph nodes and margins are clear. But Tuesday was the day when I learned that my tumor, which was estimated to be 0.6 cm at the time of biopsy and therefore potentially small enough to not warrant chemotherapy, is exactly 1.0 cm. Any breast cancer tumor 1.0 cm or higher leads to suggested additional therapy, and my cancer is once again triple negative, so there is no other therapy available. It is grade 2, which is better than grade 3 (tumors are graded 1-3 on how closely they resemble normal cells. think of grade 3 cells as the most mutant of the bunch, 1 the most normal, 2 somewhere in between). It is, apparently, a miracle (again, yes, I've heard that before) that I found it. On the day of biopsy, it still didn't show up on the mammogram. Not to scare women who have been led to believe that mammograms are amazing lifesaving devices, but think about it...the tumor didn't show up on 8 different views of mammography...and they were specifically looking for it. It could only be seen on ultrasound, and even that was questionable. Like most young women, I found the tumor myself. In fact, I've done that twice now. It's a skill I'd rather be done with, frankly.

So, as my surgeon said, mine is a "very interesting story." It is something "we don't see very often." It is "amazing." And it is "a very, very good thing that (I) found it so early." My story is apparently something that has affected lots of people, including my medical team, which is comprised of people I would assume would be used to this stuff by now. This surgeon, who barely knows me, said "from my perspective, your surgery and the results from it went perfectly. As for the rest of it, if I could take it all away, I would."

But that's not possible, is it? And so I went to see my oncologist Wednesday, resigned to the fact that he would recommend chemo for me and armed with all the things I was going to say about it. I spent a sleepless night remembering all the strange side effects I had, including ones they had rarely if ever seen before, and how hard it was to get anyone to pay attention to me about them. I remember being told I was "fine," no matter what was happening. I was getting angry and I was getting my dukes up and I was all ready to storm in the door like that fictional cancer badass everyone wants to believe in so badly.

And then, the physician's assistant came in, and she just looked crushed. She told me she had been "reeling" when she learned of my recurrence, which is a weird thing for her to say, frankly. She said that the doctor would recommend chemo, and that he would probably specifically recommend TC chemo (taxotere and cytoxan). I told her those were the two specific drugs I was hoping to avoid. I told her how extreme and devastating the menopause was for me, and how I knew that three years had passed, so I was older, and this was the second time, not the first, and the likelihood of that being permanent was high. A tear threatened to come out of my eye. She looked so sad for me. I talked about various chemos, and said look, I know a lot more than I did three years ago. And she just nodded and said, yeah...and you've done this before. Eventually she left and said she would bring the doctor in, and we waited.

There are a few things you should know here. One is that cytoxan is one of the harshest drugs a person can put into her body without dying. I am not being dramatic. It's the truth. People associate baldness and vomiting with chemo for breast cancer, but I don't think they often consider WHY those things happen. Cytoxan tries to kill all fast growing cells--all of them--and it succeeds. It destroys ovarian function and kills the eggs you are storing, leading (as I was told yesterday) to early menopause if you are lucky enough to get there. Because I took cytoxan 4 times, I now have the ovaries of someone 8-10 years older than me, and I will probably go into permanent menopause when my youngest child is in first or second grade. Think about what kind of drug it is that has that outcome. Taxotere is stronger than its cousin Taxol, which I took before, and it can cause permanent neuropathy, chemo brain, and other ailments. They both suppress immunity, leading to potential life-threatening infections, and they raise your risk of leukemia and other bone marrow diseases. Actually, all types of chemotherapy for breast cancer do those last two things.

You should also know that my oncologist and I have been dancing this dance for three years, wherein I have done annoying things like read all the information he gives me, argue with him, and insist that I know a thing or two about my body. We have come to an understanding, and part of that understanding is that ours will never be a relationship wherein he just tells me what to do and I blindly agree to do it. I have never been the kind of cancer patient I was supposed to be.

I was thinking about all of this when he walked in the door and asked how I was doing. I just looked at him, and he said, yeah, I know. This isn't good, this isn't what we wanted.

I knew right then that something had changed.

The first time I met with him to discuss chemo options, he handed me these binders and pamphlets filled with extensive descriptions of how the different chemos worked and potential side effects; he handed me an 85 page clinical trial that I deemed was not useful for me and potentially harmful and honestly, that's when the dance began, when he realized I actually read the whole damn thing and understood it. But this time? He just sat there. He had nothing with him. He told me I was not a statistic. He told me that he was not going to tell me that my prognosis was dire without chemo, because that wasn't true. He said that I needed to make a decision, and they would understand that decision either way. He told me I have an 80-85% chance of being cured by surgery, even taking into account my triple negative status. So my chance of recurrence is 15-20% if I do nothing, and chemo reduces the chance of recurrence by a third. And I did the math and said, so I still have a 10-13% chance of recurrence, even if I do chemo. He said yes, because most people in my situation are cured by surgery alone, and most people will not benefit from chemotherapy, because they don't need it. But I still recommend it for you, because there's nothing else that you can do.

I asked about platinum-based chemos, and one of the good and bad things about going to a top research onc is that he knows about all the studies, and he said, there is not a shred of evidence that those would specifically benefit someone like me, who has very early stage triple negative disease, and yet I would risk the more complex side effects including neuropathy and other potential long term problems. So, he recommended the TC chemo, as I knew he would since it has a proven benefit, and then this happened:

I told him I would not take cytoxan again. I said I wanted to avoid taxanes, and I understood they wouldn't give me taxol again, so it would be taxotere. I got ready for the argument.

It didn't come.

He simply nodded and looked me in the eye. He said there was a chemo regimen that used to be used for breast cancer: CMF chemo, but they could remove the c (cytoxan) and give me MF chemo for 6 months, and I would probably hold on to my hair, and the side effects should be much more manageable. It's still chemo, and it can cause extreme sickness, it still has a risk of menopause and bone marrow disease and infection from low blood counts, which is problematic for someone who is allergic to almost every antibiotic in the market today. I asked why people don't do this more often, and he explained that they added the C to the regimen because it provides an incremental benefit, but for someone like me with early stage disease and a small tumor, incremental would literally be not very much. He said they never go back in time, only forward, so as protocols change, most cases do not revert to the regimen of old, and yet, in my case, it would provide almost the same benefit and was a tried and true method. I asked about a million questions, and he answered them in a straight fashion.

I asked him to write down information about the regimen, and instead of handing me novels of information, he wrote it down on a script sheet--just the drug names, and the amounts, written as if I was a pharmacist who could easily interpret the information. He handed me a script for physical therapy (very says "evaluate and treat.") and then, I told him that I wanted someone to take the gauze and tape off that had been placed after my drains were removed on Monday because the blood had dried and everything was stuck to the skin. Except for excessive numbers of breast exams, I don't think he's ever touched me outside of shaking my hand. He looked almost confused that I would ask him to do that. And then...he just ripped it off, the way you rip a bandaid off a child, and he looked at me and said gruffly "sorry." And he patched me up again.

But those are just the specifics of what he said and did. Those words led me to this place of impossible decisions, and I am no closer to knowing whether or not to do nothing or to do this chemo regimen than I was two days ago. I am seeking a second opinion, but it is a real bitch of a process. It takes forever and usually involves you physically getting the slides of your actual tumor and carrying your cancer (literally, you carry your cancer) from one hospital to the next. But I discovered something on Tuesday that changed the game, that was so crushing to learn. Upon receiving my pathology, I knew that any oncologist anywhere is going to recommend some kind of chemo for me, so a second opinion will just be that, some kind of validation of thought process.

Something has definitely changed. Everyone--the surgeons, oncologists, nurses, PAs, fertility specialists, even my gyno (who visited me in the hospital prior to surgery and was absolutely devastated; I thought he would weep, and it was strangely difficult to see him that upset)--is treating me differently. All of the rhetoric of old is gone. All of the "you can do this!" "let's give this all we've got!" cheerleading and masking of reality has vanished in the face of the fact that I know what this is, that I know things now. No one is attempting to make me feel like this won't be so bad. No one is sugar-coating the truth in order to get me through the treatment. No one is making any promises. Everyone is looking at me with a mixture of sadness, resignation, and, I think, humbleness.

Imagine being in this business. Some people do it to try to save lives, to be a part of hope for a cure, and others do it with a little bit of a Jesus complex that enables them to think they can conquer cellular demons and cheat death. They see people suffer and they must tell themselves that it is for a reason, it is for a goal, that the suffering is short term and a thing of the past.

And then, someone like me comes along, someone who is young and fit and exercises like a maniac and weighs 53 kilos at the time of surgery, someone who has done everything that was asked of her--someone they could not cure. And that someone can no longer be treated as a box that was checked; that someone is a reminder of what cancer is, and what those who wish to fight it are up against.

But doc, even the radiation didn't work?

No, apparently not

And so it is that they look at me, and speak to me, as if I am not a cancer patient anymore, but a peer.

And so it is that through witnessing this change, and the devastation that so many have felt when they have heard this news of mine, that I realize that I have, in a sense, been freed.

I am freed of the burden of being a breast cancer survivor.

I no longer have to think about the "right" time to celebrate being cancer free, because it's possible I have never been cancer free. I don't need to worry about anniversary dates of surgery, chemo, or what have you, because now there would be multiple dates for everything and none of it means anything anymore. I don't need to write blog posts about how none of this feels like hope or like kicking ass, because it is just hard, and it is just life-threatening, and it takes a lot from you; I don't have to say this anymore because everyone knows now by looking at me that those things are true. I am not the woman the pink campaigns were intended to target. I am now one of the ones that other breast cancer survivors fear, though I am in a lesser camp of fear than women with metastatic disease, obviously.

I am the elephant in the room, albeit the baby elephant.

I don't need to talk about beating cancer anymore, I will not feel the pressure to be a skinny bald poster child of bad-assedness anymore. Now I can continue to do what I have always done, which is to say that cancer is a thing that is extraordinarily challenging, and it involves suffering and grief, and that is just how it is. It is a thing you can live with, and if you are someone like me, you can live with it again and again, because you don't have a choice.

I know people might think this is a negative attitude. The funny thing is, I don't feel negative at all. You don't see a lot of crying and wistful looks in this house. This recurrence has all but cured me of my reverse-nostalgia, as I realize that I should no longer worry about things that I might miss with my children as they grow up, because I have been firmly cemented into the present, as if nothing else exists but this, because nothing else can be known, because that is the truth.

If you were to come to my house (something that I know some people hesitate to do, because they don't want to intrude, or because it would bother them to see me, which I can understand), know this. You would see me cooking my own dinners, and yelling at my kids, and doing weird arm-stretching exercises. You would see me cringing at my inability to have anything touch my left arm due to temporary (I hope) nerve damage from surgery, and acting manic due to being forbidden to do much lifting or cardio; you might see me doing a one-armed forward plank. You would not see crying, or screaming, nor would you see ass-kicking or fist pumps. You would see me acting like a normal, functional person who is neither depressed by nor happy with her current quandary.

You would see a person who has been in a similar situation before, and who has carried the knowledge of that situation with her all of her life. I was diagnosed with epilepsy--a condition that kills more people every year than does breast cancer, though many fewer have the condition--when I was six years old. I took extremely toxic medication, which poisoned my liver and caused drastic side effects, though it worked for me. I was "cured" of epilepsy at age 8 through a series of events that not even Kafka could imagine, only to have epilepsy return to my life with a vengeance when I was 11. I stopped taking medication when I was 17, and have been seizure free ever since, though the specter of it remains, as it could come back at any time.

I know that I will never know why I had that condition, and why it did not cause the brain damage, cognitive disabilities, and physical impairments that it causes for so many. I know that while there were things that helped alleviate the likelihood of having seizures, such as adequate diet and sleep, nothing could erase the fact that I had epilepsy and others did not.

I know that there is an answer to the question of "why?" and yet it is not the answer most people want to hear. It is not an answer about not being healthy enough in other aspects of my life and it is not even an answer of environment or genetics or birth control pills or any one thing necessarily.

I have done this twice now, and that fact gives me permission to say the following. Why did this happen? The answer is obvious, isn't it?

Something went wrong.