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 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 701: Dear Doctor

It's official. Hell has frozen over. I'm about to write a letter of (probably half-assed) apology to my oncologist for some of the not so nice thoughts I've had about him over the years. Emphasis on the SOME. Other things I would say again, right now, if he called me on the phone. But I'm a big girl, and I can admit when my perspective changes, so here goes:

Dear Doctor:

I was very interested to read this article in Reuters today that suggests that you were actually right about things you said to me while I was in the middle of cancer treatment, even though they seemed so wrong at the time. When I was first diagnosed with breast cancer, I was in such a state of shock and ignorance that doctors could have told me that I needed to slice my ear off to cure it and I probably would have believed it--if only for a second, before I got as bitchy as you know I can be and started to argue the point in some kind of crazed voice. Before I met you, I understood that my experience with breast cancer was different from most of the other women I had met who had the disease. I fell into this weird "triple negative" category. I had multiple tumors. I was not only not post-menopausal, I was nursing, for God's sake.

So things would be different for me, I learned. I would not get an MRI, because there would be a "100% chance of false positives" due to the fact that I was lactating. After a bunch of ultrasounds and mammograms, including that sci-fi 3-D ultrasound, I was offered only one test: a chest xray, to see if cancer had metasticized to my lungs. I had no other scans of any kind. Because I was triple negative, presenting at 0% for all hormone receptors, there was no additional testing to classify my tumors. I did do BRCA analysis, because everyone assumed that a young, triple negative breast cancer patient would be BRCA positive. Everyone was wrong. Remember that?

This seemed strange to me. Don't I need to find out if cancer has spread? I asked. I really didn't get any answers. This looks like early stage breast cancer, I was told. Probably stage two. When I had surgery and my lymph nodes came back negative for cancer, I was downgraded to stage one, regardless of the existence of three cancerous tumors. After a second, probably unnecessary, surgery, I met you and started to make my plan for chemo.

And you didn't give me a whole hell of a lot to go on. You are stage one, and that is great news, you told me. Your cancer is very unlikely to have metasticized, but we need to make sure it won't in the future. There are no maintenance therapies for you so you have to do chemo. You told me that there were no material differences in the kinds of chemo I was offered (failing to mention the drastically different side effects, however). You offered me a clinical trial that included Avastin. When I challenged you on why I would be offered a clinical trial that was intended for late-stage breast cancer, for a drug that could bore holes in my lungs, intestines, and spleen, you said this: "Because you have a tumor of greater than 1 cm, you are eligible. Everyone in that case is eligible. We like to see people enroll in trials because that is how we do research. You are under no obligation to do it. It does not increase chance of survival in your case. These are all good therapies for you."

OK, Doc, no thanks, I thought. I didn't realize then that my honesty in thinking the whole trial was insane begot your honesty in telling me why you offered it to me. I didn't realize then why you looked at me so strangely when I rattled off all of the side effects I wanted to avoid by not taking Avastin. Jesus Christ, you must have been thinking. I gave this girl a 60-page document full of medical-speak on a clinical trial and SHE READ THE WHOLE DAMN THING. I should have seen that look in your eye that said, well ok. Here we go.

And then we started dancing, you and I. It was not a mating dance, but a dance of war. You had an unbelievably obnoxious way of seeming to deny everything that was happening to me when I started chemo. Most people don't lose weight on this regimen, you said. Morbid insomnia? I've never heard of a patient not sleeping at all for five nights. You are still vomiting? Impossible. Bone pain ten minutes after your neulasta injection? How strange. And then, your favorite turn, your favorite move:

"You look great."

Don't even get me started, doc. I'm bald, and I only weigh 110 pounds, and I am so weak I can't feed my baby his food with a spoon because my hands shake too much. Granted, I was somehow still going to the gym when I could and walking every day. But no matter. I started to self-diagnose, took myself off of almost all of the side effect meds (thanks for offering me that anti-psychotic medication to treat my....nausea?), and started acupuncture. I stayed with you because I heard you were one of the best, and because I loved your chemo nurse. Her bedside manner was almost opposite of yours, and she scoffed at the very notion that I should get a port if I didn't want one. She was patient, and she never blamed me. She agreed that I am some kind of freak who reacts badly to all drugs, telling me at one point "when you finish with cancer, don't ever take any medication. ever! for the rest of your life."

So I stayed. I stayed through continued denials about what was happening to me, allergic reactions, menopause, all of it. Maybe now I have some sense of why.

I made it through. You told me, "now you are done with chemo. You and I can just have, you know, social visits."

What was that? A hint of humor? Of humanity? Admitting that you knew I wanted to strangle you?

Every three months I've gone back to you. And here's the thing: Our visits are mostly, well...social. You talk to me, ask me questions, take off my gown, feel my breasts and push my body onto the table so you can feel some more.

You don't give me any blood tests. Nothing to look for tumor markers. No MUGAs, not after that first one to see if I was eligible for AC chemo, even though I had a heart problem on taxol. When I was in active treatment you refused to give me bone scans, arguing that I should switch my forms of exercise (erging, spinning) or stop wearing heels. We're talking about cancer and you're giving me fashion advice? Asshole!

Many people have told me to switch oncologists on this fact alone. Most of the women I had talked to with breast cancer got blood tests the moment they walked in the oncologist's office, even if they didn't know why. Multiple MUGAs could be routine. PET scans, CT scans, the works. But not for me; my dance instructor believed in only the basics. Nothing but mammograms? How do you know if cancer has spread? other survivors would ask incredulously. Well, according to you, I would know. I would rest, and wear flats, and my back pain would just get worse. It would never stop. If I was short of breath all the time, well, maybe I had breast cancer in the lungs, or a heart condition brought on by chemo. Headaches that don't go away with aspirin? For days at a time? Extreme fatigue? OK, maybe there's a problem. You always told me this: "I don't offer you tests and scans because you don't need them."

And here's where you made a mistake. All you needed to do was tell me WHY I didn't need them:

If I had metastatic breast cancer, knowing it now when I was asymptomatic, as opposed to knowing it in six months when symptoms appeared, wouldn't make any damn difference. My prognosis would be the same. You didn't tell me this. You didn't tell me that because I was triple negative, it was unlikely for my cancer to metasticize to the bone, like most breast cancers are known to do. Triple negatives usually attack the soft tissues, bypassing the bones and going to the brain, liver, or lungs.

And no matter what kind of screening I would do for that, I would not live very long if I had metastatic triple negative breast cancer to the brain.

And, further, I would have those months of my life back. You always tell me "enjoy the holidays" or "enjoy the summer," and now I understand. You ask about symptoms, and when I don't have any, you are pleased, and you assume my cancer has been held at bay. Why put me through more tests, more fear, more agony of wondering and waiting, if there will be no material difference in outcome?

Now I understand. But you should have told me. I am a very smart person. I am a grownup. It's my life, and my potential death, and you should have told me for this reason:

Because I asked you. I asked you over and over again. Some people don't want to know the truth, and I get that. Some women need the peace of mind that a clean scan or a good blood test can provide. Maybe most women need that. And you, you are a stubborn son of a gun and you don't believe in doing medicine for the sake of peace of mind, and you assumed I was like everyone else, so you didn't tell me.

Here's the kind of person I am: I don't want to do a mammogram right before a major event. Many people like to schedule such tests before holidays, for example, so they can get the good news and enjoy themselves. Not me. I see bad news lurking behind every corner. I want to enjoy what I can, then do what I have to do, and if the news is bad, well damnit at least I enjoyed Halloween, or Easter, or whatever.

I don't have a general problem with regular testing. I did it all my life. I had epilepsy, remember that from my chart? Every six weeks I had to do blood tests to see if my medication was poisoning my liver (it was, but not too badly, so I had to stay on it). I had to do regular EEGs to see if my seizures were declining or changing (they stopped on medication). These tests made sense to me even at six years old. I understood why they were necessary: dosage might need to change, medication might need to be stopped and swapped with something else, they might need to do something else entirely if medication didn't work.

So I get it. But it's not the same with early stage breast cancer, is it? You just have to hope that it went away, that early is what you had, and that it doesn't change on you. You just have to hope, and fear, in ways that other people cannot understand. And now I can see it. I felt wonderful when I found out I had breast cancer. I was so healthy, and vital, and alive. I had cancer for years, I learned.

I'm glad I had those years, wherein I gave birth to two beautiful children, and that I didn't know I had cancer.

I don't want my daughter to start getting mammograms at age 24 just because she is unlucky enough to have me, a young breast cancer survivor, as her mother. Who has children at age 24 anymore? Here's the thing. Lenny is built exactly like me. I can already see it. She's 6 and weighs 34 pounds. She and I have the same BMI of around 19. She's all legs, small feet, will have my small frame, and probably my small breasts.

And if she ever had breast cancer, she would know.

I felt it even though I was lactating and the odds were completely stacked against me to feel it. I have no fat in my breasts, just breast tissue, and, at the time, milk. My ob told me "you felt that thing as soon as it was palpable. I don't know how you did it but you saved your own life."

For the love of God don't take my daughter's sanity, fertility, and youth from her by making her do tests that will not cure her of a cancer that is either there or isn't there. Mammography doesn't cure a damn thing. But if something is found, it changes your life forever. And at age 24, I want her to have those years.

Of course, my daughter will never have breast cancer. If I have anything to say about it she will stay skinny, and never go on the pill, and unlike other parents who might struggle with their kids having kids at young ages, I'm hoping that Lenny has kids way before 30 if she chooses to have them at all. I can't let my mind go there.

Because it was all so awful, chemo especially. It was all so hard. It still is. There is a feeling of isolation that follows me like a cloud, a point at which I can't relate to women my age. I can't even relate to myself sometimes when I feel that I am having more pedestrian problems. I lost friends, and I lost some aspects of myself, but I am going to tell you this:

I would do it again.

I never thought I would say that, but I would do it again.

Because now I can see myself the way you did. I can see myself bald, and skinny, and exhausted, and ranting, and furious when you looked at me and deadpanned "You look great."

Because, after all, I was yelling in your face. Screaming, using big words, gesturing grandly in your office, about to start a fight. I was reading all the shit you gave me, exercising, raising my kids, going to work, having sex with my husband, refusing your advice on what medicines to take and just generally being a royal pain in your ass.

I was so...alive, wasn't I? I was still...me.

You could see it, and I couldn't. Just like when I saw this picture of me in a bikini, and I thought ugh, I look awful, I have no business putting a picture of myself wearing that online. I thought it would be good to follow up on my last blog, since I don't think I look like any kind of athlete in any way, and I thought it was funny to point out that all of my radiation tattoos are visible but I've stopped caring. While I was complaining about how I looked Gabe said, shut up Katy. How could you look fat in a size 2 bikini?

He could see it, and I couldn't. He could see me in a way that I couldn't see myself. So it was with you. I couldn't imagine looking like this now, considering what I looked like then. I couldn't imagine the future at all. And I thank you for sparing me the extra tests and the hand-wringing.

Now don't get me wrong. I never, ever in my life want to go have a beer with you. I think you need some serious help in the people-skills department.

But your cancer-fighting skills were apparently on point.

Till our next social visit Doc. Till then.

--Katy

Day 499: Fight Like a Girl

Wow; writing that blog title was strange. Today is the 500th day of knowing I had cancer; I started writing this blog the day after my diagnosis. I guess the one thing that can be said about cancer is that it's often a slow-moving beast, even when you have a fast-growing, aggressive type like mine. Cancer was growing in me for an estimated three to five years, and there I was, nurturing other human beings in and from my body, using my body to the best of my ability, living life. Other diseases can do you in a lot quicker, I suppose. I'm thinking about this because we went to see Contagion last night, a movie I swore I wouldn't go see, because of the mass death of children, focus on disease and treatment, and the fact that if I'm going to pay $60 for a movie since I need to pay the babysitter it had better be the best damn movie of my life.

But we ended up there anyway last night, since it was too cold to go to see a high school football game, our dorky date of choice for a Friday night. Can I just give a shout out to high school football games? When you're actually in high school, maybe it doesn't seem so great (actually, it did, when I was there), but this is one of those things that is just stopped in time and is still fundamentally awesome, even if you don't know a soul on the field. It's still $3 for a hotdog dinner, it's still beautiful in the fall and you don't even have to talk to your date because you're watching the game, and there's a band and halftime entertainment and just the people watching alone, especially all of the insufferable posturing of teenage boys, is worth the price of admission. We went last weekend and we could've walked the few miles to the game, but we were testing out our new 13 year old next door neighbor babysitter so we didn't leave early enough. We had a blast. As another aside, here's a shout out to the neighbor kids too. I'm in the office looking down into my yard and there's the 11 year old neighbor who is the quarterback on his little football team yelling things like "go straight down the middle Augie!" and patiently watching as my two year old son and five year old daughter run around like fools having the time of their lives. And it was his idea no less! I love it.

So the 11 year old's 13 year old sister watched the kids and we got a quick beer and then went to see a show. I was so prepared to hate it and be supremely disturbed. Granted, it's rough at the beginning, but it's so clinical and everything happens so fast that you don't even have a chance to feel sad about any of the individuals. There's actually one scene that's funny. But damn, they title the scenes just like this blog, in number of days, and by Day 100 or so, millions of people are dead. And though it's not at all related, since obviously cancer isn't contagious, I have to give the movie credit for making me think about things a little differently.

I remember very clearly when I reached 100 days. I was so deep into chemo, and it was a week or so before my 35th birthday. I don't mean this as any kind of slight to people who have cancer and don't do chemo for whatever reason, but sometimes I feel like if I hadn't had to do chemo, cancer would've been just a blip in my life. My way of thinking about cancer is directly linked to my experience with chemo. Yes, the fear was there, the grief and disbelief, that was all there pre-chemo. The surgery was shocking for so many reasons, especially since I had to do it again. Not knowing my BRCA status, my stage, yes it was all a nightmare. Radiation was no walk in the park. But I knew the moment I was diagnosed that I would need to do extensive chemo, and damn. Chemo--it did things to me I didn't know were possible to have happen to a living person. I know that sounds dramatic, but for this woman whose body rejects most drugs, it's the truth.

And yet. How much better it must have been for me than for people who tried the first chemotherapies as human experiments 30, 40 years ago. This was back when no one knew if chemo could be effective, when the doses were extreme and the protocol was to do it for an entire year regardless of your stage or type of cancer. I kept thinking about this as I was watching this film full of great actors, some of them pretending to be doctors or scientists searching for a vaccine for this disease that killed people almost before they even knew they were sick. This thing moved so fast, you hardly had a prayer. I loved the juxtaposition of the conspiracy theorists in the movie, who are convinced that the government is in bed with the pharmaceutical companies; some believe the disease is made up, others believe the purported cures are fake. And everyone here knows how I railed against chemo, how close I was to quitting, and how I questioned whether or not I was trading an early stage cancer for some kind of unknown lethal side effects, other cancers or heart disease down the line, etc. I was definitely a chemo-hater. I still am. I'm still glad I didn't take the side effect drugs, that I did acupuncture instead.

But I'm also glad I did chemo. Now that I know what I know, I can see that I came back to myself after all of that. I feel just as young, fit and healthy as I ever did. What does this mean? My chemo nurse told me at one point that the chemo was affecting me so severely that I at least should take heart and know it was working. Now I look at it like this: My body took that. What a punishment, what a beating. And now here I am, almost like it never happened. Score! When one character in the movie last night was talking about how no one knows what the side effects will be of the vaccine, I thought, no one gives a shit. You would take it anyway given the carnage. You would rail against the vaccine, and against chemo, and you would do it anyway, because you would have some evidence that it worked for some people before you. How brave those people must have been in the face of all those unknowns! How glad I am for them, so that I could have this one chance to fight this triple negative beast.

Ah, triple negative. The status of my cancer that makes me wish the internet didn't exist. I found some blog today, written by an MD who specializes in breast cancer, which stated that the test that they do to determine hormone receptive status for breast cancer is wrong 10-20% of the time. It is only wrong in one direction, apparently: some significant minority of women who are deemed to have estrogen negative cancer are actually estrogen positive, and yet they are denied the drugs like tamoxifen that could save their lives because they are never re-tested.

Boy, did I not need to read that. On the one hand, I am so grateful I don't have to take any more drugs, so glad that I don't have to have artificially-induced menopause anymore. But it makes you think. What if that is the reason that recurrence is so much higher for triple negative women, that the mortality rate is higher? Is it because they're not triple negative at all, they were just denied the right treatment?

It could make me angry, it could make me paranoid, it could at least make me ask for another test. And yet, I mostly just think, well, in reality, they are doing their best. Don't get me wrong. There is a lot of B.S. in the medical industry in this country, a lot of politics and way too much money wrapped up in it. There is a lot of sexism, a lot of infantilizing of grown women, there's a lot of shit, that's for sure. But most of the time, I think individual doctors and nurses are doing their best, knowing that they know nothing, even when they act like know-it-alls.

Contagion brought me to this thoughtful place, but I have to admit that the reason I get to be contemplative about chemo is that I'm not in the middle of it anymore. Back at day 100 I just thought oh please God, not again. Don't do that to me again. I couldn't get reflective about it when it was knocking me on my ass. But who was I talking to? I was the one who handed my damn arm over every two weeks. I was the one who kept going back.

I don't know what precipitated the desire to write this blog, but for the need to acknowledge that I actually think science is cool, and that it has aided my life in some very real ways. I also think it's important that science is no science--there's a lot of guesswork, a lot of mistakes, and maybe those of us who need to rely on it at some point in our lives just need to accept that.

When I dabbled with being an animal rights activist in high school (that didn't last long--I'm way too people-focused, and everyone knows I'm no pet person), I just couldn't get behind the whole no-testing-medicine on animals debate. I was taking Depakote twice a day, after all, the drug that poisoned my liver and that simultaneously allowed me to live a normal, seizure-free, life. Even after all the testing that had been done before me, that drug was toxic as hell (I don't understand why drugs like Depakote are prescribed so widely today, for all kinds of conditions, when they have such potentially devastating consequences). Of course it couldn't have been tested on humans first. It's hard to admit that, but it's true. Animals died, people suffered in the early stages of prescription, but, for me, it was worth it. It worked for me, amazingly, and I blended into the world fairly effortlessly. Wouldn't you want that for yourself, for your children? You could say otherwise, until you're confronted with some other reality, and then you're willing to try anything.

Well, almost anything. I wasn't willing to enter a clinical trial and try Avastin, which had no expected benefit for someone with my type and stage of cancer, but had unbelievably disturbing potential side effects. (In a controversial decision, the $100k a year drug was taken off the FDA's approved list for breast cancer treatment very soon after I started chemo). But no one would argue that chemo isn't toxic, especially adriamicin and cytoxan. Taxol's not much better. If something can destroy the nerves in your body, obliterate your ovaries and rot your fingernails right out of their beds, it's no joke. But if it can kill your cancer too? Well, it's debatable for some, but as I sit here feeling entirely like a healthy and happy 36 year old woman, it sure seems worth it.

I never thought I would say that. While I was in it, it was so horrible. Life is like that though--as they say, this too shall pass. The hope is that you will be there to look back on it, that the experience will pass on, not you. So far that's happened to me. I never thought I would say that I hope I am truly triple negative either, but I do hope the test was right. If it was, I can say that I did everything I could do (except for the fact that I've been eating too much good food recently, and I swore I would avoid fatty things, but now that I can eat without vomiting or having hot flashes I am just loving it. 118 pounds here I come!). If somehow the test was wrong, well shit, it's not good for me to be getting these periods now is it? But at some point you have to stop second-guessing and just accept it. We're all doing our best with the information available to us at the time. You can't get lost in the possibilities.

Way back at the beginning of my cancer diagnosis, I got a call from the mother of my best friend from high school (my friend sent me this shirt that I'm wearing in the pics, and another Fuck cancer one, which isn't my style, but now that I'm out of treatment I think this one is cute). She had had breast cancer herself. We talked for a bit and she said one of the most human things anyone said to me at that time: "I know you'll do your best, Katy." Not, I know you'll beat this, I know you're a fighter, I know you'll live, I know you'll kick cancer's ass. Just, I know you'll do your best. That's the only thing you can do, and I do think I have done it. Maybe they'll know better by the time Lenny's grown. Maybe fewer women will get breast cancer at that point. Maybe I'll even be around to find out for myself! And if not? I did my best.

Maybe that's what it means to fight like a girl. Don't expect to win, don't get cocky about it, don't shove your victories in anyone's face, don't think you got there on your own, and don't thump your scarred-up chest too early. Fight like a girl, and see what you can learn from the game. Just do your best.

Day 364: One Year Later

I know that from the title, you might think that I don't understand how many days there are in a year. I do, all too well. I started this blog on "Day one," or one day after I learned that I had breast cancer, on May 5, 2010. On May 4, 2010, I received the news that changed my life.

This idea of a cancerversary is interesting, as there are so many dates that one might use to mark a year. I could think about yesterday being one year after my biopsy, after I received the piece of paper telling me that the results of the mammogram indicated a possibility of breast cancer. I could think about June 4, one year after surgery, when the cancer was removed (that is the date that the doctors use, I believe, to say you have survived for one year). I could mark the end of chemo, October 18, or the end of radiation, December 10.

I could, but every cancer survivor I've ever met counts from the day they received the diagnosis. And what a day that was.

I went to work, in pain from the biopsy, and concentrated on the logistical issues that came up in regards to my major conference that was to take place a few weeks later. I got a call from my ob/gyn who had given me the referral for the ultrasound a week earlier (99% sure it's nothing, go get it checked out and call me back with the good news, he had said) and if I hadn't been in such denial I could have reached out and touched the pain in his voice. Have you heard from the radiologist? No, nothing yet. Oh ok, well let me know when you talk to her.

I learned later that he already knew, that she had called him to say that she was very concerned with what she saw and that she thought I had cancer. I think he was crying when he called me, but I just couldn't let myself hear that.

I went home and hung out in the yard with Gabe and the kids and our next door neighbors. I watched my cellphone, waiting for it to ring, and I brought the cordless phone from the house out too. A call came in on the landline and Gabe answered it. The doctor asked to talk to me. I took the call and again, if I hadn't been wishing with all my heart against it, I would have known from her voice the second she said hello.

Before I made it to the house she said "I have to tell you that we did find abnormal cells in your biopsy." Pause. OK, I said. "Specifically, we found cancer cells." I felt like I would vomit but I just stood there numbly and said OK. "Are you in a place where you can talk and where your husband can get on the phone with you? It would be helpful if he could take notes while we talk." I was silently crying. I walked back into the yard, looked at Gabe and nodded. I saw my neighbor put her hand to her face and gasp. I guess Gabe must have handed Augie to someone, but honestly I wasn't paying any attention.

That phone call was one of the most surreal and nightmarish experiences of my entire life. Gabe took notes on a netflix slip. I learned that I was triple negative, though that meant nothing to me at the time. She told me I would need to do chemo, that it was early stage, perhaps even stage one but most likely stage two, and that I was a good candidate for a lumpectomy and radiation. She told me I had either two or three tumors. I was referred to a few surgeons. She knew I was still nursing so she said that I couldn't have an MRI but that I would need other tests, and that due to my age and triple negative status I should get checked for the BRCA gene. She told me I would likely need to wean as soon as possible. I asked about my chances for survival and she told me they were good, that many women in my situation did very well. All I could hear in that was what was behind it, the fact that some women did not do well at all. I had to acknowledge that if I was asking about my chances to live or die, that that was exactly what I was facing: a life or death situation. It didn't seem possible. This doctor had a very naturally cracking voice, but I could hear the emotion there too, even though I couldn't, if you understand what I'm saying. I couldn't let myself hear that.

I remember looking outside and thinking how beautiful the day had turned out to be, how sunny and warm. I felt so healthy, so fit, so alive. I know that I responded to the information I was given, and I know Gabe tried to sound very businesslike as he asked questions and took notes. I know he thought I was going to die and that he would be left to raise the kids himself. I know that, even if he didn't say it. I don't remember if I cried during the call itself, but I remember how hard it was to breathe. The rest of the day was a blur. I think I took a walk, but other than that, I'm not sure what happened. Where were our kids? Did they eat dinner with us? What did the neighbors tell them? I have no idea. I'm not ashamed to say that for a few hours I had to pretend that I didn't have kids at all, that I wasn't a mother, because thinking about them was too painful for me to bear.

I didn't want to talk to anyone after I hung up the phone. I made Gabe call my mom. He agreed, though I know he had no idea what to say. He went upstairs so I wouldn't hear the conversation, but he called from Augie's room and didn't realize the monitor was on. I heard the whole thing, him crying, saying, Kate has cancer. Of course, I couldn't hear what my mom was saying, though I could imagine. Later that night I called my ex-boyfriend. I still don't know why I could do that but I couldn't pick up the phone when my brother called. It doesn't matter, I guess.

I decided that night to write this blog, when I realized how impossible it would be for me to tell anyone in person, or on the phone, about my cancer. I just couldn't handle it. I had no idea who, if anyone, would want to read it. I didn't care. I wanted to update my family and any friends who might be interested, and I wanted to give those closest to me an out. What does that mean? Well, when people would ask Gabe tough questions, ask him about things he was too emotional to discuss, he could just say "read the blog." I also wanted something else, deep down. In those initial days of terror, I wanted some way to document something of myself, to leave something for my kids to remember me by, as they were too young to remember me much, if at all, if I didn't make it.

The blog has been more than that for me. It's been cathartic, and has helped me work through more emotions than I could have handled in any other way. It's enabled me to write about the injustice of cancer treatment, to document all the unfair and torturous and bizarre things that happened. The blog has been my photo album of cancer, allowing me to see what I used to look like (is that woman with long red hair really me? She must be someone else), what chemo did to me, what it looks like to be healthy after cancer treatment. It actively hurts me to look at some of the pictures we took of me, especially in the late fall when my eyebrows were gone, I was still bald but had the horrible peach fuzz coming in, and my body was burned from radiation.

What the hell kind of shit was that?

I've tried to read this from start to finish, and I've never made it all the way through. First of all, it's very long, probably 350 pages or so at this point. Second, something always stops me. I get to the middle of my A/C treatment and I just can't get past it. I am shocked that I worked while doing chemo when I look back and read the documentation of everything that was happening to me at the time.

You might ask what was the worst part, and you might ask what I have learned. The absolute worst part of this year has been the fear. The fear that I started with, the fear that remained. It has dissipated but not disappeared. It was with me last night when I had a strange, tingling pain in the back of my head. It's with me all the time, with every decision I make about what to do with my life. I don't focus on it, but it's there, in the background, reminding me.

I haven't written about this at all, because I was afraid of jinxing it, but we are in the process of trying to buy a new house. The whole deal might fall through for a variety of reasons. It has been very stressful, though once I received the news of my clear mammogram last week, I felt such a huge weight lifted from my shoulders that in some sense I stopped caring about the house or about anything else. The enormity of that relief was fleeting, however, and life continued, and some of the stress returned. But here's the point I want to make:

I think we want to buy this house because of cancer.

For me, it's because it gives me something to look forward to in part--it's a project, and it could even signal a fresh, post-cancer start. But more than that, I have wanted to do it because I feel that given our occupations and the fact that we are never going to make it big, buying this house might be the best investment we could make that could put Gabe and the kids in a better situation if I were to die. I think Gabe wants the house because you can see the sunset and sunrise from the top floor, which is very rare in Chicago, and he sentimentally wants to watch those with me for as long as I'm alive.

We will be fine in our wonderful cozy current house if this doesn't happen, but the point is, I don't think those are the regular reasons that most couples have for buying a house.

We are fresh out of regular reasons over here. I can honestly say that 2010 was the worst year of my life. It's a terrible thing to say, given that I had a healthy baby who was learning 75% of all the things he would ever know in his life (how to walk, how to talk, how to feed himself, give a hug, and eventually use an ipod) and that I had a little girl who needed me to be happy as she lived out her fourth fragile year. But it's the truth.

I know I should celebrate and say, I made it one year! I know there are a lot of people with cancer who can't say that. I should look at this self, this body, and wonder at how completely I have come back. What makes this anniversary so poignant is that I can remember what it was like a year and two weeks ago, when I was just living my life and death was nowhere lurking. I can remember how it felt to have my youth taken from me, my idea of myself as a healthy young mother. I lost so many things in one year, as did my family. I have detailed all of those things here--from the physical, such as my hair, or Augie's ability to nurse, or the friendships that didn't survive cancer, to all of the intangible emotional losses. I won't even try to explain how it feels to come out on the other side, because while it is beyond wonderful, it is not worth knowing if you don't have to know.

And so I have learned something. A year is not enough. It goes by so quickly, no matter how much you suffer, how much changes, how much things get better. Time is so fleeting, and that's both a blessing and a curse. If you have one year, you want ten, especially if you have small children and you realize how much they change in such a short period of time. They say that as parents, we lament how the days are long and the years are short. That has nothing to do with parenthood--that's just the truth of life. Thirty five is way too young to have cancer, to be so close to death's door. And yet it's hard for me to believe that I'm thirty five, when I was five just yesterday, when everything that has ever happened to me, no matter how big or small, might as well have just happened.

One year ago, I found out that I had breast cancer. I should say that I will never look back, because that is what I am supposed to say. But of course I will look back. That is the only way any of us can look, back into our lives, to remember. The rest, the looking ahead, we are just imagining. It is worth imagining and dreaming, it is worth it to look forward to what hasn't happened yet. It is also worth it to remember what was real, no matter what it was. I would have liked to trade this year for just about any other, but I wasn't given that option, as no one ever is. So I will look back on this year and shake my head, but I will look with some fondness as well, because it's my life. For better or worse, before cancer, during and after, it's my life.

Day 354: Resurrection Day

As I think about how to begin an Easter blog, I can't help but start by saying that those of you who know me well know that I am not a religious person. On holidays such as Christmas, this is not really a problem, as the themes of family and giving to others and generosity and empathy don't have specific religious connotations. While we exchange gifts and have our own host of Christmas traditions, I don't feel that we are particularly commercial about the holiday or that it's hard to explain to our kids what Christmas is about. I have explained to Lenny about Christ's birth, and why that is important in our culture. I'm probably one of the few non-religious folks out there who's read the Bible cover to cover, so I can handle that.

Easter is entirely different. We dye eggs, and do Easter egg hunts, and I buy candy, and we get together with family members whom we don't see very often. But when I told Lenny that Easter is not really about candy or bunnies at all, she asked me what it was really about, and I was at a loss as to how to explain it. In part, I am afraid to bring up death with her at all right now. We are reading Charlotte's Web, and I don't want to get to the end, because she is so sensitive about death due to my cancer (even though we never connected those two things together for her, she's not naive about it). But I also just have no real words to discuss resurrection, to open up concepts that will bring so many other questions about what our familiy believes.

Normally I enjoy these types of challenges, but honestly I'm just tired, tired of the personally morbid thoughts that those types of conversations that we as parents have a responsibility to have with our kids bring into my consciousness right now. So I let it go for this year. I suppose that's forgivable. We had a wonderful holiday. I gained three pounds in one weekend from all of the food--and candy--that I've consumed. Augie did a great job on the egg hunt, considering this is the first Easter when he could walk. Lenny read the note from the Easter bunny, counted the eggs, helped her brother, picked out her own outfit. Cancer seemed so far away, even though it isn't, considering that mammogram I have coming up on Thursday. I honestly don't know how I'm functioning on any sort of level that doesn't involve obsessing about that scan, but somehow I am. I try to act as if cancer's in the background in our lives, as if I've been given some new life, resurrected as some different, healthy, short-haired woman, but as I've said before, there are always reminders.

We were going through the Easter pictures and I remarked that my hair looks so brown in pictures, though in person it looks red. Lenny said, I really hope that I never get cancer. I tried not to wince, Gabe tried not to shed a tear. I said, why, because of your red hair? But mine is the same color, it just looks different since there's not much of it, and mine was always darker than yours. Yeah, she said, I guess. It's not really about the hair, and I know that. She looks at me and thinks that cancer made me different, that I am a different mom, and she doesn't want that to happen to her. I'm glad at least that she isn't yet afraid to voice those concerns.

It can be hard to talk about these things without breaking down, especially when in the back of my mind I wonder if this is all some big cosmic joke, this hair, this weight gain, this health, and if I will find out in just a few days that I am going back to do it all over again. Of course everyone tells me, but you caught it early, you saved your own life, you are stage one, you will be fine. I hope so, but I don't know so, and no one else does either, no matter what we tell ourselves.

I've been thinking about this a lot, this way that we need for cancer to end on a positive note. And I do mean the collective "we." Obviously I need to believe that, or it means the end of my life, and my family and friends need to believe it because I am important to them. But as a society as a whole we seem to require it, to focus so much on the survivors, that others can be pushed aside, willfully forgotten, even resented for not being able to win the fight. It is grossly unfair.

In the last week I have had the unfortunate opportunity to learn what survivor's guilt means. I always thought that it had to do with feeling guilty that you are alive when someone else in the same situation has died. That's not it at all. Survivor's guilt means that you feel guilty that you are glad to be alive, that it isn't you who has died. It makes you feel like a really terrible person. It feels unforgivable.

Last Sunday, a team member from Row passed away. She was 43. I never had a chance to meet her, because she has been very sick since I started rowing. Four years ago, at age 39 she was diagnosed with Stage one breast cancer (meaning no lymph nodes involved) and she did a lumpectomy, chemo, the whole thing. She later found out she was BRCA positive and had a double mastectomy. A year later her cancer returned anyway and metasticized throughout her body. She left behind a husband, a five year old daughter, a lot of friends and family. Her name was Cindy Gerstner and she really seemed like such a wonderful person from everything I heard about her. I felt very sad and angry about this, and guilty that I couldn't attend the funeral.

But I also felt like a completely shitty person for how much it scared me to learn the details of her being stage one and having a tragically severe recurrence so soon after she ended her treatment. I felt terrible thinking "I hope that doesn't happen to me." What right do I have to make this tragedy about me, even during that split second before I stop and remind myself that this is not about me and my shit but the end of the universe for someone else, the end of a childhood with mommy for a child who isn't mine, the end of so much for other people--not for me? How am I any different than all the people who turned my cancer experience into something that had to do with them, who used it as a way to reflect on their own lives, who shunned me or ignored me because just looking at me scared them? God, it made me feel shallow, and hollow, and weak. I feel like a heel for writing about this here at all, because by doing that I am making it worse, and I am using a life that isn't my place to discuss for some purpose of my own. I don't mean to do that. But I get it now, this guilt. And I am truly sorry for the loss of Cindy Gerstner. The Tribune ran a very nice piece about her that I would encourage others to read: http://articles.chicagotribune.com/2011-04-20/features/ct-met-gerstner-obit-0421-20110420_1_rare-fish-species-cancer-survivors
I thought I was somehow above this notion that survival is the only acceptable cancer solution that we can handle. I thought that the way I have contemplated my own death and even planned for it in some weird ways protected me from the steep denial that I still feel about that concept. I wish that I believed in some kind of life after death, some kind of resurrection, that I could honestly tell my daughter that if cancer took me away that I could see her again. But I don't believe that, so every special moment or day still has this kind of painful poignancy. And it brings more guilt. I wanted to read the paper this morning, and Augie started hitting me, something he does when he wants attention. He got in trouble, then apologized (me Augie Sorry mommy) and then I continued to try to read the paper. Gabe told me I should play with him, that sometime soon he won't want to play with us anymore, that he'll be like Lenny and be in his room all the time.

I felt so guilty, even if that wasn't his intention, even though I love the fact that Lenny steals away into her room all the time. I loved doing that as a kid, creating my own little world all by myself. I don't particularly miss her, because I know she's there. I'm not a mom who is in my kids' faces all the time, doing crafts, bonding. I'm there, and I love them and cook for them and read to them and I'm trying to stay alive for them, but sometimes I wonder if the way I do things is the right way or if I'm dooming my kids to remember me standing at the kitchen sink, if they remember me at all, when they'd rather remember me rolling around on the floor with them.

Then I tell myself that my kids would rather not have to remember me, because either way, they would rather get to be normal kids with a normal mom who lives to be old. They'd rather think that I'm better.

That's what we all seem to need from this thing, to get better. I was really struck by this the other night when we watched Love and Other Drugs on netflix. When Anne Hathaway's character says, you need me to be better so that you can let yourself love me, I actually said out loud, huh, every person with cancer feels that way. Then I said, oh, I know that wasn't true for you, babe, but I know that a lot of people couldn't deal with me when I was in the middle of treatment. A lot of people were waiting for me to get better so they could talk to me again, just like they did when I was nine and I was in a wheelchair. What happens when you never get better, when your cancer treatment lasts for the rest of your life, you never get out of the wheelchair, your epliepsy is uncontrolled and devastating?

I'll tell you what happens. You lose a lot of people, even if you shouldn't. But you still deserve to be loved and you still feel the same. You are still yourself, but many people will treat you otherwise. Even a movie that was trying to make this point couldn't move past it. This young woman with Parkinson's was only symptomatic during the few minutes of the movie when the romantic relationship was in question. For the rest of the time, her lover can say he accepts her condition without suffering the consequences of what that means, since it doesn't seem to mean anything for her except that she has some artsy sense of ennui that leads her to sleep with all her doctors (wow, is that a completely repuslive thought to me. how would that come up in any kind of conversation?). There was one post-modern scene in the film when people who must have really had Parkinson's were talking and joking about it at a convention. I thought, here we go, that's how folks with Parkinson's really talk, really stand, gesture, etc., and they're going to go there in the film.

Nope. She had a mild case, she got the guy, they had great sex (I'm sorry but I felt they had zero chemistry which was a shame, given the great amount of eye candy involved. Gabe even said wow, Anne Hathaway is such a beautiful woman, why isn't she sexy? So maybe we were missing something in the film?), they lived happily ever after.

As I thought about this I felt guilty again. So far, that's been me. I'm the one with the relatively mild epilepsy, who was still able to do what she wanted with her life in spite of it. I never had brain damage, I am able to drive, I can take care of myself and my children. I'm the one who learned to walk again, who talked to the guy holding a gun at my head so I could get my keys out of my bag (so he wouldn't have my keys and my driver's license, thus gaining access to my house) and came away unscathed. I have this desire to say, and I'm the one who had cancer and lived a long time. How is that fair?

Then I need to pinch myself. I'm not that person, not yet. I'm not out of the woods, and yet I so desperately want to believe that it is all behind me. Is it true that I was just in menopause a few months ago, I thought as I bought maxipads at the store today because I don't keep extras anymore, as I'm half convinced each period is a sham. Is it really true that I coudln't have had that iced mocha a few months ago without spinning into a horrible series of hot flashes? Was I really bald? Did I really have three cancerous tumors? Did I really wean my son almsot a year ago in just a week, not because I was tired but because I had some damn breast cancer? What the hell is that?

There's guilt again, and I feel it as I write that about weaning Augie. For the last few days we've been trying to wean him off the bottle. Yes, my son is almost two and he drinks a bottle of warmed milk before his naps and at bedtime. Not at daycare, just here. I don't mind it an nap, but he needs to brush his teeth and not have milk on them all night, so we've been giving him a bottle of water instead. Last night he fought it like mad, but today he was ok. He will not drink milk out of a sippy cup--only a bottle or a normal cup, no top. So either it's the bottle or a total mess. Soon I'm sure he'll give up the bottle of water, and it makes me so ridiculously sad, and angry too. Why did we have that taken from us? I actually really liked nursing him, unlike the struggle I had with Lenny. He just looked at me tonight like he was saying, well, so that's over, huh? For a split second it reminded me of those hurt looks he gave me last year in the mornings when his dad fed him the bottle and I didn't even go in his room because I couldn't bear it. But then he smiled at me and offered me his pacifier (he had two of those in his hands, and I don't give a shit if he has them until he's four). He must have known I could use some comfort, even if I did my best to hide it.

So that's how it is over here. It's normal and it's fun, then it's sad and sentimental. It's scary, it's mundane. There's guilt and there's walking to the park. There's thinking about explaining the concept of death and resurrection to your child and there's me turning to Gabe in the middle of a movie and saying, do you think people with Parkinson's can take the pill? Because she must be on it, the way they just start going at it all the time and never use a condom.

Suspension of disbelief, he said.

And therein lies my problem. I've always had trouble with that. I want things to be like they are, to be real, to be true. For the last few months, I have had a new life, a resurrection of sorts. But that has only been possible because death is lurking around the corner, and it isn't particularly positive. It's somewhat daunting actually, and there's a lot of pressure, wondering what I'm supposed to do with this new life that's just like the old one, albeit more "felt." I feel my life more, but sometimes all that means is that I feel more shocked and terrified at the thought of it ending soon, later, at all. And I think that's ok. Cancer doesn't turn you into Sartre. Life still matters, the small things are still important.

I feel guilty about my relationship with my son and then I feel this weird pride when he points to the El tracks several blocks away and says "choo choo." We live near the metra, not the el, and the metra runs along the ground on the south side. He has seen the el when we drive on the highway, but there was no train on the track. He saw the rusty track in the distance, among a million other things that there are to look at in the middle of downtown Chicago. He knew there should be a train there, and I wondered how he could know that.

Gabe said, you know how he knows that, you've said it yourself on multiple occasions. Oh I know he's no dummy, I said. No Kate, that's not it. He's been here before, he knows what's going on.

I don't believe that, not really. But I have no other way to explain the things that he does, so I think, nah, but what if...what if?...

Happy Easter.