Day 938: Cancer Hoax

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

PSYCH!!

But alas, I can't do that.

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

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

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

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

He's still alive.

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

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

Thanks!

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

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

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

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

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

No, he didn't say that.

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

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

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

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

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

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

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

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

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

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

Again...thanks!

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

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

Do you know what I want?

I want to trade.

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

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

But I can't.

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

These words are true.

Day 932: Chemo: The Gift That Keeps on Giving

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Day 924: A Letter to My Daughter on Her Fifth Birthday

As I have been trying to help promote this year's Listen To Your Mother--Chicago show (submissions are due January 15!), I thought it would be a good idea to include the text of the piece that I performed in the 2012 show; this piece, in this exact form, hasn't been posted here yet. You can see the video on youtube (turn up the volume!), read the producers' feelings about it, or ponder my own thoughts about what the experience meant, but maybe the most useful thing would be to show you what I said. And yes, I mean said, not read. Because Lenny was in the audience, and I said this to her.



A Letter to My Daughter on Her Fifth Birthday

by Katy Jacob

Dear Lenny:

Today you are five years old, and I am writing you a letter. In some ways this entire breast cancer blog of mine is a long letter to you and your brother. I write it with the selfish hope that if I don’t survive, you will know something about me, other than that I loved you and cooked good dinners and made you laugh. It seems to me that almost everything about how a parent loves a child is selfish. We want things for you, we steep ourselves in denial for you, but really we do those things for ourselves, because you have taught us how short our lives really are. You make us wince with your innocent curiosity: “When I am grown will I still see you every day?” “How old will you be when I’m grandma’s age?” “Will I have long hair, or do you think I will get cancer and my hair will fall out?”

And it is upon hearing those questions that we make choices. We make the choice to acknowledge the imminence of separation, illness, and death, and then to just let it go. If I could make any choice, I would go into the future so that I could know you as a grown woman, and see the answers to your questions for myself.

In the meantime, I am astounded by you, by how you are such a…Lenny. Parents like to say that their children are a part of them. That is simply not true. Take, for example, your memory. You remember all of the things we say, all of the things you’ve seen, all of the people you’ve known. That’s just a part of you, like so many other things. We did not make you smart, or fragile, or funny. We did not make you shy around people and comfortable on a stage. We might have taught you empathy but could not teach you the appropriate times to use it. We did not make you fussy, or willful, or contrary.

We might have given you your looks, but we did not tell you how to handle them. I still laugh when I think of that birthday party we attended when you were three, after the fourth or fifth father told you how beautiful you were and you looked him right in the eye and said, “I know that. Are there cupcakes?” As you get older, I know how weary it will make you as the questions turn into propositions and the appreciative glances turn into unwanted stares.

I wish I could make a different world for you. When you ask how old you will be when this happens, or that happens, you are really asking, “Mom, what will I be like? What will the world be like?” And the answer is that the world will be the same, but you will not, because that is what happens with people who live in the world. I can remember being five, being as happy and friendly and shy as you are today. What I don’t remember is when that was lost, when I learned how to be mean, to fight with my fists, to run and not stop running. In the scheme of things I wasn’t that much older than you.

I want so desperately to protect you, even though I know I might not be there to do that. On some level you know that too. That knowledge is a burden that I gave you, but I didn’t tell you how to deal with it, because I really didn’t know how. I realize now that all I could do was deal with my burden myself, and that you would learn from me how to deal with yours.

I only wore a wig for a few weeks, and only for a few minutes a day when I walked you to school, because I didn’t want you to have to answer questions about cancer. I spent close to a thousand dollars on hair, and then spent six months just walking around bald. And that is the lesson I was teaching you, though it was hard for me to see it at first, until I learned that you were giving preschool cancer tutorials, telling everyone: “My mom is on chemo. It’s medicine for people with cancer that you get through a needle in your arm. It made her lose her hair and it can make her sick. Soon she won’t have to do it and she will feel better on radiation.”

As with many things over the last five years, I just didn’t see that one coming. That is the gift you have given me—the gift of being continuously surprised. It is difficult to find a way to thank you for that, or to repay you. So what would I give you if I could give you anything on this day? I could be trite, and tell you to be yourself, to enjoy life, to have no regrets, to find something that you love to do, to be a part of improving the world. But the truth is I just want to know that you’re there.

Perhaps that is what I am trying to pass on to you, this strange ability to be a comfort just by being. It might be a better way to walk through life than any other. Or maybe I tell myself that to make it seem acceptable that I am not the things that I am not. I am not the perfect nurturer. I have been stern, and angry, and busy, and sick, and scary. I often read the newspaper and ignore you. I am the reason we watch sports on TV, not cartoons. I leave the house a lot to exercise. I cook and clean and collapse on the couch and I rarely get down on the floor to play with you.

I want to offer to you the one thing that I can’t promise you: I want to still be there. I want to see and talk to you every day. Someone once told me that if he didn’t see me all of the time, it would make him sad, but he wouldn’t miss me, because he knew he would see me again. I will always remember how he paused before he said, but even if I didn’t, it’s enough to know that you’re out there in the world, and that you’re all right. Lenny, if I ever get to a point where that’s all I can ask for, and the last thing I know is that you and your brother are there and that you’re all right, it will be enough. Happy Birthday, honey. I love you.

--Mom

Day 921: KatyDidCancer Year in Review

Oh 2012, how quickly you've come and gone! And here I am, a young cancer survivor who feels lucky to be getting older, and I know there is so much that I should say, so many poignant statements that I could and probably should make about life and love and family and health and the nature of time.

But I'm not going to do that.

I love writing this blog, but damn, it can get deep. And I'm not really that deep, at least not most of the time. I'm the girl who likes to watch football and makes playlists about bootys and reads People magazine and steals the last swing from some kid at the park so I can use it myself.

So, I'm going to pay homage to some of the people who have helped me keep it light this year, which was easier to do than in 2011 or God help me 2010, but still a bit of a challenge on occasion.

Here's to the people who make the Internet worthwhile, those lost souls who do amazingly awesome Google searches that send them to katydidcancer, which was clearly not what they were looking for, though they chose to read it all the same.

It may be disturbing, but I will always take some kind of misplaced cancer girl pride in all the searches for "hot bald girls," "sexy bald women," "hot skinny bald chicks with scars," (whoa, that's specific!) and "hot naked body" that lead people here, though I'm not exactly sure about that last one. I've put some questionable pics on here, but nothing I would be embarrassed for my family to see. Furthermore, to all those searching for GI Jane, I know you were hoping for Demi Moore, but oops you got me instead! Holla!

And to all the pervs out there who are looking for some online pleasure but have clearly not really learned how to use the Internet, you absolutely deserve to get sent to a cancer blog! Google ain't THAT smart, so if you're searching for "16 year old breasts," "wife undressing," "nice nipples," "my first time," or Jesus Christ, "corrupting virgins," you might get better results if YOU GOT THE HELL OFF OF GOOGLE. And it kind of seems redundant to search for "naked vagina," unless you are a 10 year old boy and you don't know what else to type in, and then I feel really, really bad that you got sent to a breast cancer blog because that will be more traumatizing to you than what you were hoping to find.

And I don't even know where to begin with "breast vacuum." Yikes.

And while not necessarily "light," I love seeing the searches from people whom I assume were recently diagnosed with cancer but who do not engage in the typical, clinical searches. By far the most read post of mine is First Post Chemo Haircut, because there are literally hundreds of people, women, I assume, who go into google and type "first post chemo haircut," "haircuts after chemo" or something almost exactly like that. They are probably the more normal, run of the mill cancer survivors, right? Then there are the folks who think about things like this:

"Chemo ennui." "pole dancing fitness for breast cancer survivors." And my personal favorite: "Cancer, I'm sorry...you suck." Can I get an amen?

And I DEFINITELY need an Amen for "pimps with cancer."

Word.

To all those who were looking for useful information online, I'm glad that I could serve as a PSA of sorts. Because someone has to help those dudes who are looking up "vasectomy shave" and "shaving my balls."

A big thank you to those who remind me that I can't be that boring of a person, because if I was, no one doing the following searches would possibly be sent to a blog about my life: "son wearing sister's clothes," "me in a body cast," and the ever-so-obvious "pullups in prison."

To those with existential crises, I salute you: "How long is 642 days?" "places to go." and "I feel like I'm doing everything halfway."

Some problems are bigger than Google.

And some are too specific for the Internet Gods to handle, methinks: "my girlfriend is running away with the circus." "is kissing ungodly?"

and finally...this. This search, which actually led to a post in my other blog, one written about my wedding, of all things:

"how to O and get your brother's girlfriend to look at your penis."

Ain't a search engine on God's green earth that could help that guy.

So thank you to those who read my blogs, and thank you to those who just make me smile. After all, if no one had ever googled "live chicken on six," and then read the really deep and insightful cancer post he was sent to, I wouldn't have a second blog at all.

So here's to 2013. May we all live through it, and love through it, and laugh through it. Nothing much else we can do!

Day 915: The Ghost of Christmas Yet to Come

Our Christmases look much like the Christmases of other young families in places like Chicago at the front end of the 21st century. We bake cookies. We try our damndest to encourage our kids to believe in Santa, in magic, and we get teary-eyed when they explain, using their wonderful childlike logic, why they do believe in things that seem impossible. We attend adorable holiday performances at preschool and elementary school, even arriving extra early to get a front row seat so we can take a video of our daughter shouting out her lines in her coveted role as an elf, recording for posterity her pride in being one of only three first graders awarded a speaking part. We buy too many presents for our kids. We tell them to listen for hooves and sleighbells on the roof, and remind them that Santa won't arrive until they are asleep. We change our handwriting and choose different wrapping paper for the presents from non-magical adults. We, my husband and I, have been together almost ten years and yet we don't really know what presents to bestow on each other, so I buy him clothes, which he doesn't want but always likes, and he buys me jewelry, which is always different than what I would buy myself but looks like me all the same. We throw a big party. We drink a little too much. We bring our families, strange as they are, together. We take time off of work. We love each other.

And so it goes. Like all parents, witnessing Christmas through our children's eyes reminds us of our own years when we were caught up in the magic on the other side, happy to be on the receiving end of all the efforts that adults put into making us smile. Like all couples who have children together, but who at one point did not, we remember the holidays that we spent when we were younger and newly in love. We remember our first Christmas in our first house together. We think about the first Christmas that we had as a family, our family, the one we made, as a choice. And I at least think about my youngest child's first Christmas, which was the last one he had with parents who still believed that the world was offering our beautiful little family a long and unopened gift that just couldn't possibly end.

I spent today, and most of the last month or so, very much wrapped up in the joy and stress and reality of this Christmas, this present-day, 2012 Christmas.

And perhaps we are not that different than other couples in this, in what I am about to say. Perhaps I should not speak for my husband, who might not feel this way at all. But I have these moments, these moments of clarity both large and small, where I am reminded of the Christmases yet to come, including the ones that I will never see. It's that glimpse of the void that is part of what makes us all human, but it is something else too, something less dramatic, more practical, really.

It doesn't happen often, but I think about holidays, seasons, life events that might happen in my absence. I don't do this out of self-pity or in order to bring some kind of dramatic flair to my life, but rather because I've been put in a position to think about it.

During our holiday party, we were happy that of the 50 or so guests, our kids' best friends were able to attend. Lenny has had a best friend since age 2, and Augie since 7 months. I never believed that children that young could make such meaningful bonds until I witnessed it for myself. Those bonds have lasted through different schools and now even different towns. And as Augie's buddy was leaving, we decided to take a few pictures of them. The photos of them are usually just blurs of little boys making superhero poses...but not all of them, not this time.

When I saw this picture, with the two of them looking like pint-sized frat boys, I had to turn away and shut my eyes so that no one could see my tears. For the first time ever, I could imagine what my son would look like as an older child, a teenager, even a man. In absence of the three year old voice, the goofy mannerisms and outlandish behavior, I could see him, as he will be someday, this good looking little boy of mine.

And it brought me back to all those days in 2011, when just the sight of boys--teenagers especially, but even older children--would make me wistful with that strange, reverse nostalgia that comes from something like cancer. I used to wonder, what would it be like if he was taller than me? If he had a deep voice? If he was embarrassed to be seen with me? If he began to date girls just like me or the opposite of me?

And will I live to see any of that?

Of course, none of us knows what we will live to see. I have lived to see more in the last two and a half years than many women diagnosed with triple negative breast cancer. I have seen a lot more than a lot of people who are no longer here for one reason or another.

But I still think about it. And while it makes me wistful, and somewhat sad, to imagine the things I might miss, for the most part, the tears are not tears of sadness.

I am grateful for the strong belief that I have, that every parent has, that he will grow up, that he will become a man, that he will live a wonderful life, with or without me. It is the almost frightening power of that belief that brings the tears.

That belief is so strong that it enables us to invent magic. On some level, maybe we as parents need this Christmas type of magic to be real, so that we can convince ourselves that through some magical force, our children's lives will be beautiful and eternal, even here on Earth.

Like many parents, I gave a lot of thought to what I would tell my daughter if she asked me about certain recent events that took place in a first grade classroom.

My daughter is in first grade.

Do you hear me?

My daughter is in first grade.

She has not asked me a thing, and I don't think she knows about it. I have no intention of telling her if she doesn't ask. But I did figure out what I would tell her if she wanted to talk about it:

Think of all the adults who have protected you all of your life. You have attended daycare since you were three months old, and every adult who has ever cared for you, and every teenager for that matter, has loved you. They would all protect you, no matter what. I don't have any idea why such horrible things happen. But I want you to understand something. Do you remember when I had cancer, which is obviously a bad thing? Do you remember how easily I talked to you about it, how I told you what would happen, and how we didn't keep things from you? Do you know why I was able to do that?

Because it was happening to me, not to you. And I could take it. I could stand it.

And I know, because she's my kid, that she would understand what I was trying to say.

And I know, I just know, that they will have a million more Christmases, whether I am here or not, and the magic it takes for me to believe that is the magic that Christmas is made of, and that is good enough for me.

Here's to a wonderful Christmas that was yet to come just a few short years ago, when it was hard to see, but it happened all the same.

Like magic.

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 900: In Sickness: Two Years Post-Cancer Treatment

I haven't written in a while, and I definitely did not intend to write today--until I looked at the calendar and realized that today is December 10.

December 10! My day of celebration. My two years post cancer treatment. And it almost slipped my mind, just as it did last year.

I am almost amazed that I can look at this computer screen without passing out. I have been sicker than I've been in years over the last few days, with an illness that seemed to come out of nowhere. Now, I did go to this fancy "ball" on Saturday night in my neighborhood, and I will admit that I had too much to drink--at least for me. That means that I was drinking Jameson's on the rocks, and I had three of them over the five hours we were there. I was also drinking water, and eating, and dancing my ass off, so while I knew I was drunk, it didn't seem that serious. Of course, I don't weigh a whole hell of a lot, so it doesn't take much. Regardless, we had left for the event feeling a little guilty, since both of our kids were sick with high fevers and general lethargy. We had planned to take them to their grandma's house to spend the night, and they were so excited about that, and SO disappointed when we said that couldn't happen. My mom was willing to come out to our house right before bedtime so we could still go to the ball, so on we went.

I was a little out of it when we got home, much to Gabe's amusement and pleasure I'm sure. Somehow, I still felt drunk at 4 in the morning when I awoke to go to the bathroom, which didn't make much sense to me. When I finally emerged from bed at 8 am, I felt like I had the most egregious hangover of all time, rivaling the worst (and first) hangover I had ever had, 10 years ago. That seemed strange, since I hadn't drunk THAT much. I made myself coffee (mistake, I know), had some quiche and some fruit. I felt like death warmed over. I went back to bed, feeling like that "bad mom" who can't tend to her sick kids because she's too much of a party girl.

Then, with a look of genuine concern on his face, Gabe decided to take my temperature. The thermometer read 101, which is about a 4 degree fever for me. I realized that my entire body ached, especially in my hips, deep in my bones. I had chills. When I finally vomited, everything spewed forth like a fire hydrant.

I spent 24 hours not moving from my bed, except to get sick in the bathroom. At one point, it was coming out both ends. Gross, I know.

But also? Not a hangover.

That Jameson didn't help, and God knows it will be a long time until I drink that again. But my kids had the right idea--on Saturday, neither of them ate anything. ANYTHING. They refused every single thing we offered them except one popsicle when my mom showed up. So their little bodies were smarter than mine, which was unlucky enough to be filled with alcohol and mini-cheeseburgers and pasta and UGH just talking about it makes me want to hurl.

Yesterday, I managed to eat about 3 teaspoons of jello and one saltine cracker. I couldn't even stomach ginger ale. I lost almost 3 pounds. I've managed a piece of toast, a little jello, and some Product 19 cereal today.

OK, so damn, Katy, you got sick. Who cares? What does that have to do with cancer?

Well, aside from the fact that even in the midst of a very obvious stomach flu, I sat there wondering why my hips just felt like they were ON FIRE. In the back of my mind, I wondered about cancer. Of course, that's ridiculous. So is having an aggressive form of breast cancer at age 34. So, your mind goes weird places as you sleep for maybe 10 minutes at a time, all in fits and starts.

I was so out of it yesterday that I did NOTHING. I didn't watch tv, nor read. I laid there, awake half the time, staring into space. Now, my body is mad at me for not having moved for the last two days. Gabe seemed to think I was at death's door, because I NEVER do NOTHING. I usually do at least three things at once. He seemed really worried as he kept tending to me and the kids and probably wondering when he was going to get this illness.

It reminded me of the fact that I hadn't vomited since chemo. They told me back then that "people don't really get sick on chemo anymore" because they are freaking LIARS. That $100 per pill Emend was a wonder drug, but because my body rejected all the other potent side effect meds, I got sick all the time. It was a relief to vomit, for that feeling of nausea to subside for even a minute. I was desperate inside that nausea, forcing myself to puke, eating only to survive. I lost 7 pounds in 10 days, and I only weighed 117 to begin with; that's how I learned that my "fighting weight," the weight I need to be to feel human, is 113. So at 115 this morning, I knew I needed to get something in my stomach.

I remember not so long ago, Gabe consoling me in the bathroom, patting my bald head. I remember him kissing me less, and I thought it was because he was no longer attracted to me, but it turned out to be because he was so afraid he would pass germs on to me and than I would die from weakened immunity that he was scared to be intimate with me. I remember not sleeping at all for five nights, losing the ability to sweat and to cry, the menopause, all of the crazy shit that happened.

And I remember that I just kept doing everything the same, to the extent that I could. I worked, I went out socially, I still had a sex life and I still mothered my kids and I lived a relatively normal life within all that shitty shitty sickness.

So what's changed? I get the flu for 36 hours and I just throw in the towel? I mean, I didn't even SEE my kids yesterday. I didn't consider going into work today, though I have a lot going on that needs to get done. I laughed when Gabe asked if he should sleep in our bed or downstairs. I have had so much worse, for such longer periods of time, so what gives?

I think that we react differently to things when we know they are temporary. I knew this was a flu, and even though it doesn't help to think about the proverbial "24 hour" nature of these things when you're terrified to stand up because you know that will make you sick again, you just figure you can wait it out. When you know that you will feel like shit for at least four months and that maybe, at the end of the day, that's as good as it will get, that worse things might await you, you stubbornly cling to your life the way you used to live it.

I was in cancer treatment for 8 months. I fast-tracked myself, gave myself little to no time between stages of treatment, so that I could be done by Christmas in 2010. The side effects lingered; I had horrible hot flashes and other menopause side effects for three more months. So, I dealt with feeling like shit from cancer for a little less than a year.

And it's been two years, to the day, since I finished with that. I still have side effects, especially from surgery, and I'm dealing with this annoying second puberty, but in general I feel pretty damn great.

These two years have given me the normalcy that other people have--the ability to get sick and just be pathetic, even if I still have those thoughts that question every illness, those moments when I wonder if each ache or pain is cancer returning. Cancer related sickness was something to fight, not give into, something to work through because I just didn't know how it would be after treatment, or if there would be an "after treatment" for me. For so many women, that time never comes.

Two years ago today, I had my last radiation treatment and, hopefully, finished my cancer treatment for good. I wrote a post that day about all that I had gone through that is still painful for me to read. I look like such a cancer girl in the pictures in that post, and yet there's something else there too, some essential side of myself, the part that had stopped caring about eyebrows, the whole "attitude" that people told me I possessed back then, which I really couldn't see in myself.

I have had a two year reprieve, a gift, really, something that might just be temporary, though we can sure as hell hope not. I have had more time since cancer than I had in it. And that time has allowed me to get sick like a NORMAL person, one who doesn't have to just keep plugging through the mess. I am very, very grateful for these two years. I am also very, very cognizant of the strength it takes to be in cancer treatment forever, as so many people are forced to do.

If I felt healthier, I would celebrate this day, but instead I will end with three thoughts. One is a solemn vow to pretty much never eat quiche again. The next is something that happened Saturday night at the party, a small thing, really. I was talking to a woman who knew me from Montessori and introduced me to her husband as "Lenny's mom," probably because she had momentarily forgotten my name. He looked absolutely shocked to see me. He touched my shoulder and said "Wow! I didn't even recognize you." All I could do was laugh, especially because as I danced the night away with my rhythm-impaired husband, tipsy and happy, I could really barely recognize myself.

And finally--this. This passage, written two years ago, when I was so much myself, but not enough time had passed for me to see it. Here's to more sets of two years!

I am not going to be one of those people who says that cancer gave me a gift, and I am not going to smile about the hope and inspiration it brought into my life. Maybe I should, but that’s not me, and those words seem pretty hollow, so if people wanted to hear that I assume they stopped reading this months ago. I will say that the one thing cancer did for me was give me a reason to write about something other than economic development, payments, or predatory financial scams. It’s not that this trip was worth it. It was total crap, actually, and the trip hasn’t ended, won’t for years, assuming I have years. But remember the scene in Field of Dreams when James Earl Jones goes into the cornfield? Why does he get to go? Well, maybe it wasn’t a privilege, but he went so he could write about it, and tell other people what it was like. I don’t think for one second that I’m as cool as James Earl Jones, or that I have some great wisdom to impart, or that I have some kind of absurd cancer calling, but someone or something pushed me into the cornfield, and in order to get through the maze, I have needed to write my way out.