1,000 Days of KatyDidCancer

I just sent my husband a text message. I returned home from the gym, changed out of my sweaty clothes, started to put some laundry away. Something was gnawing at my mind. He is with the kids at their gymnastics classes, and I always prepare to put them to bed as soon as they get home after the long, exhausting day that is Wednesday in our family. But something told me I needed to check my blogs, so I did, and then I realized:

Oh my God.

And I texted him:

"Today is my 1,000th day of KatyDidCancer. I have to write tonight."

He might not have seen it yet. He's busy, he's probably throwing juice boxes at kids with one hand and driving the car with the other. When he sees it, he'll know. And he'll put the kids to bed tonight.

This has become a part of our post-cancer routine. Not me not putting the kids to bed; we always took turns with that. THIS. Me writing and people leaving me alone. My kids knowing that one of the things that mommy does is write. What about? Well, it depends. It doesn't matter.

Or does it?

There is a breast cancer study that is making the rounds in the news this week on post-traumatic stress disorder in breast cancer survivors. Most of us who have had the disease just shake our heads and laugh. You think? Yeah, there might be some stress involved in a disease like this one. You might have scanxiety and flashbacks and trouble with cancerversaries and do weird things like cry around teenage boys or picture every single person you see bald or get even more fidgety than normal. Especially because you know that you will never be told that you have achieved "remission," because that doesn't exist for your cancer, so all you can hope for is a long, passionate slow dance with NED.

Cancer will always be there, no matter how long we who have survived it are here. And I mean it will always be RIGHT HERE. It's a part of me now, like everything else that is a part of me. And I can honestly say that I have never had anything like PTSD from this.

You might find that surprising, considering all the keeping it real that I've done on this page. But really--when I hear other women talk about their constant fear of recurrence, their obsession with checking their breasts or chests or skin, their panic and sadness and the ways that their families are falling apart and their partners can't deal, I feel terrible for them. I get it, but I didn't feel it. And here's why:

This.

This blog, this public forum, these words. It's this that's saved me. Well, this, and having early stage disease. My death from cancer is entirely possible, but so far only theoretical. There is no way to overestimate the impact of that truth.

I have had some PTSD in my life, I realize now. That term didn't exist, but I had that after my car accident. I had night terrors for a long time and I changed my behavior and engaged in new rituals to help compartmentalize my fear. That didn't happen because of my temporary disability. In fact, that was relatively easy for me to understand, because I didn't know anyone who had been immobilized by a car accident, and my being in a wheelchair made the whole thing very public, and I couldn't hide it, so I had to just deal with it. However, the need to accept and place my own mortality at nine years old was a little harder to bear. The figures of authority who betrayed me, the fact that they wouldn't let me go to school, and the way life just seemed so impermanent now--that took some time to get over, because I never, ever talked about it. Once I said the words "It's not fair that I could have died and that I'm going to die," I slept peacefully at night. And epilepsy never gave me PTSD; that was something I told everyone about, something I had to fold into my life as I took medication every 8 hours, something that everyone was confronted with when I had a grand mal seizure in front of the entire sixth grade.

And through those experiences, I became a little bit more of myself. I have written a lot lately about issues of sexual abuse and harassment. I have eluded to things I will never write about. And now that I am 37 years old and decades have passed since I had some of those experiences, I realize what was so hard about them, besides the violation, the paranoia they brought on, the thousand little and big betrayals, the way I was forced to question myself and my body and my friends and my decisions. The hardest thing was that I couldn't tell anyone. Every time I tried--and believe me, I tried--the experience was downplayed, or other kids acted "jealous" of the attention I got, or I just felt oddly called out about it, so over time, I stopped talking. I changed things about myself, I avoided situations, I stopped trusting people, and I kept it to myself, and it kind of, well...haunted me.

Cancer has angered me, scared me, worried me and it has changed me in some ways. But in general, it has just become a part of me, and I don't feel altogether different. Breast cancer is an especially hard cancer to have from an emotional perspective, because it is talked about so often, women who don't have the disease live in fear of it, there are so MANY blogs and books and studies about how to deal with it, that it is entirely possible to believe that you are just experiencing this whole mess WRONG. There are a lot of people telling us how to feel, how to behave, and the ubiquity of breast cancer in our culture ironically makes it really hard to actually, you know, HAVE breast cancer. But then, something like KatyDidCancer comes along, and gives one woman the authority over her own experience, and to hell with what anyone else thinks. So maybe KatyDidCancer, or cancer did Katy, but there they are, living in harmony inside that one word.

How did this save me from the ravages of stress and fear and from the haunting? It saved me because cancer is absurd, and surreal, and the treatments are even more so, and writing about that made it real, made the memory last. When traumatic things happen and you don't tell the story, it just stays in your mind until you think maybe you made the whole thing up or maybe it wasn't true or maybe it wasn't so bad. I wrote it as it happened, and saved my sanity and the sanctity of my memories in the process.

So it was cathartic. And it made me feel useful--to hear how my words helped other cancer survivors, to understand that there are people I don't even know who have found some aspect of this story to be inspiring.

But there's the rub--that's it! It's in telling this story. Not the story of cancer. The story of Katy.

I have heard from teenage girls who were changed, and helped, by reading my posts about gender and sexuality. I have heard from men who never get emotional, telling me that they have wept at these words. I have had an impact on people, and that matters, even if it's some perv looking for bald lady porn who gets sent to a breast cancer blog and is forced to think about reality for a minute or two. That is an amazing feeling, as wonderful as learning that one of my daughter's classmates could not stop talking about poetry for an entire week after I visited the class for 35 minutes to do a poetry exercise, and she started asking her mother to get her poetry books at the library.

But none of that is what saved me.

I have been able to literally use cancer, to flip it, to make it work for me, so that I could talk about things I never thought anyone would care about, so that I could write words I always wanted to write--not just about me and my life, but about life with a Capital L. I have written a letter to my daughter and read it in front of a crowd of people, something I could not have imagined doing before cancer, or more aptly, before KatyDidCancer. I have written poems, or shared old poems that no one else had ever read. I have been brought back to myself, the writing part of myself, through this, and that is how Katy has been able to do cancer and stay Katy, without too much of an identity crisis.

Recently, I convinced my daughter to read the book Black Beauty. It was my mother's favorite childhood story. I really don't like horses, so I haven't had any interest in reading it to her. Gabe reads a few pages, and then she reads it herself. I spent about ten minutes in her bedroom the other night talking to her about the book. I showed her that it was published in 1927. I said that was the date THIS ACTUAL BOOK was published, not just the story. When her Meemaw read it, the book was already decades old. Her great-grandmother, who died when Lenny was 4 months old, was 8 years old in 1927, and that's how long that book had been in our family. That is why it was falling apart. She asked me what century that was (20th) and what century this was (21st) and I could see the wheels spinning as she thought about the nature of time. I told her to think about her grandmother reading that story when she was her age, and to realize it was not just the same story, but the same pages, the same smell, the same THING.



I know now that whether I have three years or thirty, 1,000 days or 100,000 days, that my story will still be there. And whether I am young or old when I am gone, someone who loved me, at least one person, because what more can you ask for, really, in this life?--someone among my children, my husband, my mom, my brother, my relatives, my friends, my ex-boyfriends, my co-workers and all those people who don't really know me but know of me through this medium--will say: Remember when Katy used to tell those stories? Remember those words? Remember how she wrote it all down so that one day we could say

Remember?

And some part of me will still be here.

The day after my diagnosis, 999 days ago, I wrote this:

I have never taken my health for granted. After having epilepsy and living through a terrible car accident as a child, I've always been happy with what my body could do. I can walk, drive, swim, deliver babies, and do all kinds of things that other people can't do. Whatever came at me as a kid, I dealt with it. I dealt with smaller things as an adult pretty well too: gallbladder surgery, infertility, cysts in my wrists. I've dodged a lot of bullets and led a happy, mostly healthy life.

I don't want to think my luck has run out. I hope you'll all see me out and about, lopsided, bald, what have you. I plan to try to be a cranky old lady because in a way, that's what I've always wanted. You know, just so the personality can fit the appearance.

It will help me to no end to write this damn blog, even if no one reads it. It's going to be a long road ahead and I'm going to be different at the end.

I was mostly right. I have absolutely been out, lopsided, bald, AND what have you. I am different, but not much different. My luck has not yet run out.

Over the last 37 years, I have lived two lives: as Katy the person, and Katy the body. Katy the body that other people have wanted, other people have hurt, other people have loved, Katy the body that didn't always work, that so often had to fight, that was always separate from Katy the person. And people who think they know me well can say that the relationship between the two Katys is what makes me who I am, and they will be mostly right. But the body will be taken away, and the person will change.

But this?

No one can take this away from me.

Day 976: Walk with Me

I'm not a huge fan of breast cancer events. I know that might be a controversial position, but, well, that suits me, right? I do, however, participate in one walk every year; I captain a KatyDid Cancer team, in fact. There's a Beverly Breast Cancer Walk on Mother's Day that benefits the local hospital where I did radiation (and where I received free massages, acupuncture and even pedicures during treatment). I still feel conflicted even about this walk. There's a lot of talk about the tatas, saving second base, signs and team names that are well-meaning but still seem to make light of a complicated, disfiguring, traumatizing and deadly disease. There are too many memorials, too much pink. But there are also thousands of people in my community who participate, and if they didn't know about me before, they find out as they walk past my lawn and see a photograph of me on a sign depicting me as a cancer survivor, and they see a placard with my name on it. I might not look like cancer girl anymore, but that's one of the faces that people know of me over here on the south side, and, well, they seem to love me anyway.

At least in this case, I know where the money is going, and I am fairly certain of the goal, which is much more specific than finding an elusive "cure." There is nothing wrong with the legion of "cure" walks. I am just not at a place where I want to dedicate my time to them, unless there is a specific focus on research that is tangible. One of the things that I remind myself of continuously is how comparatively lucky I was in being able to access quality care in a simple and affordable manner after being diagnosed with a rare and aggressive form of breast cancer. I could walk to one of the best research hospitals in the country from my office, so it wasn't hard to get to chemo. I lucked into being assigned one of the best breast surgeons out there. I chose to do radiation at the closest hospital to my house, because going elsewhere every day would have been extremely frustrating and would've been like a second commute. The south side of Chicago is not replete with the same health care services as, say, the north side, and yet the small hospital where I burned myself every day was actually wonderful, and the cancer center there is pretty damn legit. I have heard of people having to travel hours, days even, to receive cancer treatment. People go into debt, have to take extended leaves from work, are forced to stay away from their families for long periods of time--all just to receive the treatment they need to stay alive.

So, I'm glad I live in a place where quality care was available, and I'm damn glad I had good health insurance.

I participated in my first Beverly Breast Cancer walk just days after being diagnosed with triple negative breast cancer. I didn't know I had cancer when I signed my family up to walk. I don't remember much about that day. Mother's Day will forever be a difficult time for me, as it falls right around my Cancerversary, and because in addition to being celebrated for being a mom, I find myself being celebrated by thousands of people who walk past my house in support of people like me. And I am reminded of other less "pink" things as well, such as the fact that cancer forced us to cap our family, and that each Mother's Day I spend is one that I didn't know I would have three years ago. And I no longer plan three years into the future.

I do, however, plan three months into the future. If you live in the area, please consider joining me on Mother's Day at the Beverly Breast Cancer walk. Register here and choose register now, join a team, join existing team, and look for KatyDid Cancer. If you walk with us, you can come to the party I'll host at my house afterwards. There will be a shitload of food and even booze at 10 in the morning. You can also donate to my team or provide a general donation. This girl--yeah, this one--is but one image of the many people who need access to quality cancer treatment.



KatyDid right? Katy DID. That's what we tell ourselves over here.

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 803: An Ode to Anyway

Wow, that title throws me. It's been more than 800 days since I was diagnosed with breast cancer. Looking at it from that vantage point, it seems like 800 days is nothing. The time has flown. It has crawled. I've wanted to stop time, slow it down, speed it up, just generally do impossible things in the space-time continuum, for a variety of reasons. Time, and the things we do with it, has been important, and it has been irrelevant. Days and milestones come and go.

I guess I should have written a blog at 800 days. Or, when it was the 2 year anniversary of starting chemo. But I didn't. I was occupied with other things. But I feel some urge to make up for those things, so here I am, writing a blog almost exactly two years after preemptively shaving my head before chemo took my hair away.

I don't have a lot to say about that experience that I haven't already said. I wrote a blog the day I shaved my head, , the day I made Gabe bic it smooth for me, and last year on July 15, 2011, when the memory was raw enough for me to acknowledge the anniversary. There's nothing more for me to add about actually being bald.

I can say that I learned some things. I learned that in some ways, having an extremely distinguishing, highly-appreciated characteristic, such as beautiful long red curly hair, can be a crutch, a burden, and a gift all at the same time. It can prepare you for rudeness, for people staring at you and then looking away. You learn an early lesson, which is that people are weird, focusing so much on some dead shit you didn't do a damn thing to bring into the world. Having something like that teaches you the importance of real compliments. My mom always taught me to give compliments based on things people could control: their style, their personality, their skills. Never give a compliment based on looks. People don't choose their DNA. I can't say I entirely agree with that; but I remember how uncomfotable it felt to have strangers (mostly white folks, I will admit) tell me I had a beautifully shaped head, and how satisfying it felt to have strangers (mostly black folks) tell me things like "that haircut looks good on you" and "I like your style" when I was walking down the street or standing in checkout lines while completely, utterly bald.

I mean, I didn't choose to be bald. It was horrible to shave off all of my pretty hair. But, in the end, I chose to walk around the streets of Chicago like that, like it was nothing. Once I was in the throes of chemo, I could have made a different choice, and it would have been fine if I had. But I will always remember getting those nods of appreciation for a decision I made. And the memory will feel something like pride.

I will always live in the house I built, the one where my three year old son sees a picture of us both bald, and when I ask, hey don't we look alike? he acts confused and says no, in that picture I'm a baby. You're a mommy. Yeah, but we're both bald, I remind him. What's bald? When you don't have any hair. Oh, ok.

Like that's nothing.

Because, you know, it is.

Don't ever tell a cancer patient it's just hair. Because it's not.

But it is. And one day, they will see it that way, and they will have earned that statement in a way that you haven't.

Hair, and breasts, and walking around without pain, and having normal toenails, and waking up in the morning and never feeling surprised--in this house, that's nothing. That's not the important stuff.

I live in this house now, where my hair actually looks stylish but every once in a while my husband runs his fingers through it and I see a wistful look on his face.

Because he's remembering how much he loved to touch my head when it was bare.

I live in this house, where it's hard to catch my breath sometimes, and my heart races when I get up too quickly, but I go to the gym in the 100 degree heat anyway.

I live in this house, which was probably an idiotic thing for us to buy more than a year ago, right around the time when I wrote my most googled blog of all time, and I love it every day with an irrational love that's all tied up in hills and bookshelves and floors that are beautiful when we never expected them to be anything but ruined.

I live in this house now, and it's a different place than where I lived two years ago. I don't miss my old house, but I do pass by it every once in a while. Sometimes, I even go inside.

They say that true courage is not being unafraid, but rather being afraid, and doing things anyway. At many different points in my life, people have told me that I was courageous by this definition.

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

Here's to doing stuff anyway.

(Including, incidentally, Twitter. Follow me @KatyDidTweet. It scares me, but I'm doing it).

Day 768: Two Years Cancer Free

Last Monday, June 4, 2012, I posted a blog about triple negative breast cancer. I did a lot of other things last Monday as well:

I went spinning at 5:30 in the morning
I had a highly productive day at work
I made it to the gym at lunch
I cooked dinner for the family
I convinced Gabe that I needed to take a walk right after dinner while he bathed the kids
I sang to my kids and read them books before bed
I mixed up a perfect Tom Collins and collapsed on the couch for a few minutes to wind down
I made love with my husband and still got to bed early since I had to wake up at 4 the next morning to get to the airport
I had trouble sleeping, as I often do; something was tugging at the back of my mind

I completely forgot that exactly two years had passed since I had three cancerous tumors removed from my body

It's a week later, and I am staring at the entry on my desk calendar for last Monday that reads "TWO YEARS!!" and wondering how the hell I skipped over that.

It's a week later, and I really wish I could go back in time and tell myself two years ago that it would be possible for cancer to be both in the foreground and the background, for it to be there and not there, for it to be on the list but so far down that other more mundane things would take precedence.

It's a week later, and I am amazed that Gabe forgot, that my mom forgot.

I mean, every year, on October 11, I find a way to mark the anniversary of my car accident. 2012 marks 28 years. I have never forgotten.

I remember important days--birthdays, death commemorations, anniversaries--even the smaller ones like first dates, engagements.

I'm astounded.

I'm thinking about this morning, when I was washing the dishes, still sweaty and hot from spinning, and I looked up and saw a note on the window above the sink, written in that slanted, lefty handwriting: "You made me smile."

It is true what they say. This too shall pass. All of this--all of those things, small and large, important and insignificant, that make up our days and our years, shall pass. It is both a blessing and a curse. These writings--on calendars, blogs, pink post-it notes left around the house--might be the only reminders that we have of what was real.

Two years pass, and it's nothing, and it's everything. And you don't even realize what has happened, but really, a lot of things have happened. It's hard to know whether to laugh or cry.

And that's it, isn't it? That's the question. Is this a tragedy or a comedy?

Or a mystery?

Day 735: KatyDid Cancer...For Real?

Wow, what a week.

What a couple of years, actually.

I have so much to say, and yet I don't know where to begin. So I guess I will begin with yesterday's news.

Most of you know that I had a clean mammogram, though saying "mammogram" in the singular is misleading. I had ten of them yesterday: six on the left and 4 on the right. I have never gone in for a mammogram and had fewer than 8 radioactive pictures taken. But regardless, the results were as close to "normal" as someone with a history of breast cancer is allowed to have. The innocuous sheet of paper that at one point warned me that I had breast cancer told me that findings "appeared to be benign." I have been so nervous, in a way that those who have not done follow-up scans post-cancer-treatment cannot understand. I have been someone else, someone stuck in a strange place where I wanted a time machine that could either stop time or speed it up, all depending on the results of that damn test. While I rubbed my sore chest after the procedure, I had the following text exchange with Gabe, waiting three rooms away:

K: finally done with images waiting to see if I need more and to talk to radiologist
G: OK. I love you! I hope you don't need more.
G: Did you get either of these jumble words? ISOTH or DOBRIF
(K thinking to self, fucking jumble words? ARE YOU INSANE? Then thinking to self: Hoist. And Fibroid. Oh wait, there's only one i. Wait a minute...forbid, that's it. Fibroid? Can you say TUMORS ON THE BRAIN? Meanwhile, mammo tech comes to get me and says, Ms. Jacob, follow me. Why, do I need more pictures, I ask in a panicked voice. She looks at me and realizes that she is about to needlessly induce panic by asking me to wait to get to a private room to get the results. No, you win the prize today, she said. You don't have to come back for a year. Sign here. What? I ask? It's normal? Yes, as normal as can be expected. oh, I said. GIVE ME THAT PEN!)
K: I'm fine! Don't have to come back for a year! Getting dressed!
G: Yay! Love you so much SOOOO relieved!

And then, I proceeded to wait another four hours until I actually got to leave the damn place. I had to wait for the surgeon next. Is there a possibility I can get in sooner? Yes, it's possible, they told me.

Well, really, isn't anything?

So when I finally saw the medical student who preceded the P.A. who preceded the actual surgeon I had been there for two and a half hours. This young kid hands me a survey. He tells me it's a research study they're doing on chronic pain, because they have started to realize that a significant portion of women, as high as 40%, have this problem.

REALLY? Who is going to pay ME to verify that fascinating revelation? Remember when I begged you all for A YEAR AND A HALF to get me some physical therapy because of issues with chronic pain and range of motion problems? Oh wait, you're like 22, so you have no memory of that. So this entire survey is one long annoying pain scale, the kind that people like me with high tolerances for pain should never fill out. The kid actually said "Yeah, most women who come in here have a high tolerance for pain." You think? Anyway, 1 is the least pain, 10 is the most. Can pain ever really be higher than 6? That's what I said in labor before any drugs when the digital meter almost broke from my continuous contractions. To make matters worse, this was a "subjective" pain scale, asking me about all kinds of different pain and whether I experienced them: stabbing. sharp. achy. shooting. throbbing. stinging.

And then it got interesting:

Gnawing? Fearful?

The guy looked at us a little fearfully, actually, as Gabe started playfully gnawing on my arm. Um, the student said...you haven't even gotten to the last one yet.

"Cruel or punishing?"

Get out. It doesn't say that. What the hell does that even MEAN? Oh, if only I didn't do research for a living, I would have a party with this survey. After choosing zero for cruel and punishing, I filled out the rest of the thing, which had all kinds of other questions about how I feel and have felt in the last 2 weeks. Do I have trouble sleeping? Yes, always. Do I want to hurt myself? Kill myself? Do I feel worthless? Um, wow. No. Have I been nervous? fidgety? Unable to concentrate? At that point I stopped circling numbers.

"You know what?" I asked the kid. "I just had a mammogram. My two year mammogram to see if I have breast cancer again. It is worthless to ask me if I've been nervous and unable to concentrate because I have been thinking about nothing else and pretty useless in other areas of my life. You all need to time these surveys better."

He looked so relieved to leave the room. I can't say I blame him. Then the P.A. came in, and I must admit I like this guy. He's pretty nonchalant. He's the one who actually gave me the physical therapy scrip, so I thanked him for that and told him how much it helped me. Then I was about to rip my gown off to offer the P.A. my boobs so he could do an exam, but I stopped myself when I realized he wasn't going to ask to do one. Just about anyone on earth could have given me a breast exam right then and I wouldn't have given two shits. He asked me a few questions and left. The surgeon came in, felt my boobs, told me I don't have to see her again for a year, and looked shocked when I told her how far my scar tissue had traveled according to the physical therapist. I got dressed and Gabe and I went out to eat. I had this delicious veggie filled crepe and some grits. I drank 87 cups of coffee.

I felt like I was walking on air. Or, even, water.

Gabe went back to work and I went back to the hospital to wait for my visit with the oncologist. This seemed pointless to me. He would ask me some questions (any aches or pains? still having cycles? taking any new medications? feeling tired?), manipulate my body and undress me and then tell me (say it with me, you know what's coming): "You look great."

Why do we have to do this dance after the wonderful news I just received? Why can't I just go home and celebrate? Of course, I know why. Here's the thing. My triple negative breast cancer was never very likely to recur in the breast. It is a cancer type that is much more likely to metastasize to distant areas of the body. Mammograms are actually likely to be normal for me. Not as likely as for someone who DIDN'T HAVE BREAST CANCER, but still, you know what I'm saying. It's the aches, pains, tiredness, that matter.

But I was still flying high off that mammogram news and the sudden realization that I MADE IT TWO YEARS. Two years with no evidence of disease. The critical two years that every triple negative breast cancer patient can't believe will ever come. And yes, my cancer could come back. It could spread. I've heard it happen to too many women before me not to know that, not to think of the women who made it two or three years out and felt great until...they didn't. And they found out they were stage 4, when they had initially been stage 1 or 2. It could happen, because it sometimes happens with breast cancer, especially when your disease type is aggressive and especially when you're young.

But it hasn't happened yet. Not in two years. And that opens up a bit of the world for me, the world where you all live and I have only visited recently. I have tried my best to be normal, all the while knowing that I will never be the same. While I was waiting for my oncologist, I started checking facebook. I sat there cracking up at the following image posted by Jennie Grimes, a woman I know from ROW who is five years younger than me and dealing with mets, waiting for scan results today that I have never had to do. I wrote her: "LOL! People being wrong on the Internet."

I'm laughing just writing that, even as I'm thinking of her and wondering how she's doing. But here's the thing. As soon as that mammogram came in, knowing what I know about how breast cancer really works, knowing that the mammogram shouldn't have given me this feeling of freedom, knowing that being two years in doesn't mean I won't be dealing with mets myself someday, I started thinking like that anyway. I started thinking random, not cancer...I started thinking about people being wrong on the internet. And it was such a revelation:

...I sat there reading GQ because the hospital's reading choices are completely whack, and there was a dated article about Chris Evans just after Captain America came out. The article was kind of boring, but the pictures of him in these uber-stylish clothes that I can't imagine any man in Chicago ever wearing were interesting. He was showing off his pecs in several of them, and since he's famous for them, you can't really fault him for that. And that's how I learned that Chris Evans has chest hair. Not Steve Carrell style chest hair, but nice sexy chest hair like a 30 year old man should have. And then I started thinking, what? Do they make him wax for the movies? Just airbrush it? WTF? That's like getting a boob job if you DIDN'T have breast cancer. Why are we always trying to improve on things that were ALREADY AWESOME?

...I was cheering on another lady in the waiting room who decided that one of the staff was rude. She was all, oh hell, I've been coming here for nine years, so I don't care about me, but what about the women who are new? What about the women who don't know what their lives will be like and they're just starting chemo? You can't treat people like that! I'm writing a complaint. She should work with some other types of patients. And I was thinking YES! TELL THEM SISTER! And then I thought, NINE YEARS? Hell if I keep coming to see these people for nine years! You should be pissed off just for that!

...I started planning dinner even though I wasn't remotely hungry after that crepe. I also wondered if I would have enough time to shop after the appointment ended and before my parking validation would expire.

...I didn't even mind my little dance with the oncologist. He asked me the questions, I asked him if I should be taking vitamins, he said no, I asked if two years was really the critical point for triple negative cancer, he said the first two or three years is always the most critical for any cancer. I said I felt great. He said You look great. When he left after about a seven minute visit that I had waited 5 hours for, I got dressed and started to upload the picture of me with my evidence of a clean mammogram so I could tell folks via FB who had been worrying about me all day. I waited for five hours, and then spent an extra 90 seconds typing in my status, and a nurse came in demanding to know if I was waiting for something. So I refused to look up at her, kept texting and said "Not anymore."

...I found that I did have time to shop, so I went to Zara and bought myself this pair of ridiculous $40 shorts that I can't wear to work, obviously, and that I'm not sure I can really wear anywhere, since I don't go clubbing and the only person who cares about seeing my legs in shorts this short is married to me and gets to see them all the time. I also tried on a skirt so short that it had little shorts sewn in, just like dresses for 2 year old girls. I started wondering if Zara actually IS a store for 2 year old girls, when I put a dress on that fit me everywhere else but was extremely tight on my chest. MY CHEST. There's hardly anything left! Who are they making these clothes for, exactly? Then, I went to the Disney store to get something for Augie for his birthday and I felt like I was walking into a physical description of the ways we destroy our children. On the right side, I found what I can only imagine to be the "boy aisle." Avengers stuff, spiderman, toy story, cars. On the left, there were princesses. Nothing but princesses. In the back in the "neutral zone" were the classic toys that some genius thought that, gasp, both boys and girls might like: Dumbo. Lion King. Winnie the Pooh. Mickey Mouse. Now, Mickey I get. He is the original disturbing, creepy yet androgynous Disney character. But what does a mom in my situation do? My son is obsessed with Snow White. My daughter thinks Hulk is "green and cute." Augie is more likely to play dress-up than Lenny is and she likes to play with his cars. They both like Pumbaa and 101 Dalmatians. So, I bought a few plush animals we need like we need collective holes in the head and thought to myself, our entire society is going to hell in a handbasket.

...I got all pissed off when I got back to the parking garage and my damn parking ticket wouldn't work in the automated payment terminal. I had to call for assistance from the little parking vending machine. The woman told me to drive to customer service. Fine, I said, where is that? The droning voice answered: "you need to drive to customer service." OK, where? ground floor? This is an enormous parking garage. "You need to drive to customer service." This went on, until I slammed my hand into the machine in disgust. The voice continued talking and the woman behind me said in response to it, "Um, she already left."

...I picked Gabe up early from work so we could go home and take a walk together before getting the kids, something we rarely get to do. I texted our next door neighbor, not beating around the bush at all: "I had a clean mammogram and Gabe and I want to celebrate! Can you or your sister come over after dinner for a little while?" She said sure, Gabe took the kids to the park and I made salmon that we ate on the porch in the beautiful early evening air, and then Gabe and I went to a dead little bar in our neighborhood and got some beer and an enormous brownie sundae. I made him drive because I was fascinated by the response to my status update. Um, 76 likes? more than 30 comments? Do I even actually know that many people? We had 110 people at our goddamn WEDDING. There were 60 people at my 35th birthday party when I was bald and everyone thought I would die so they'd better make this one. Now, I realize that teenagers get that kind of response to their posts about eating breakfast, but this was new to me. Oh, just facebook friends, I thought. I know like 4 people in real life. But actually, that isn't true. Many people who responded are people I do know and interact with in my current, real life. There are all kinds of other folks I don't see in person thrown in there too: ex-boyfriends, friends from college, high school and even grade school, old co-workers, relatives, teenagers who babysit my kids, women from my crew team, moms from playgroups that haven't met in four years.

All people who don't want me to have cancer. People who don't want me to die. People who were happy for their own reasons, including, as Gabe said, that "some of them are probably hoping they don't have to hear anything from you about cancer anymore because they're sick of it!"

Well, too bad. Unless I stop writing this completely, which is a very real and even imminent possibility (are my random ramblings really interesting if they aren't about cancer? this is the thing that still confuses me about blogging), cancer is a part of me now. I do not see the victory in going back to my old self. I'm not sure which self that would be. I am different now, and I'm ok with that. I can do a lot of things and have done a lot of things. I am not trying to prove anything to anyone, not anymore. But that isn't to say that things haven't shifted. After all, for at least the next several years, I will have cancer colds, where you have normal colds (though when I wrote that blog, it turned out to be strep, not a cold). I will be judged for my every action: my diet, my drinking habits, the size of my body, my use of household cleaners. I will try to avoid doctors like the plague because I feel like the medical community has essentially moved into my house and I WANT THEM OUT. Time for a pap smear? Excuse me, aren't I one of the 20% of American women without HPV? What are the other likely causes of cervical cancer, exactly? Why would I do some cancer screening I don't need? Oh, I guess because I like my doctor and I want him to see how well my hair has grown out.

I'll never have that long hair again, if only because the past two years have taught me that the two years it would take to grow it back are better spent doing other things. I'll never feel that my breasts are an erogenous zone. I'll always have that husband who will see them that way for his own sake, until once in a while I realize he is really feeling for cancer lumps, and then I will smack him in the face and yell at him because I don't want those two parts of my life to ever meet again. I will not have normal backaches after spinning. I will have less patience, not more. I will probably never be able to do more than 5 pushups in a row, or ever do pullups or chest flys, because my pec is burned and my pain, while so much better, is still chronic. I will have a 400% higher chance than you of developing another form of cancer because I had breast cancer before age 40. I have an 85-90% chance of making it to five years, meaning that there's a 10-15% chance that I won't live to see my 40th birthday, which is different than the way the odds look for you. Things other people care about will seem petty to me a lot of the time, though as I discovered yesterday, even the petty has the ability to come back to me.

For a while at least, I can live in that space. The one where my biggest concern for the moment is what perfume to wear to the bar where no one else will be. Decisions decisions. That place where the choice is obvious for reasons that are different than your reasons. The room where I smile as I spray myself with "Happy Heart."

That place where I think about other things. The world where Katy Did Cancer. And then didn't have to anymore.

Day 730: 2 Years and Counting

As of today, I have officially survived breast cancer for two years. Of course, I have one of those pesky mammograms coming up in four days that could put me right back where I was at the beginning, so it seems somewhat premature to be writing this. Then, even if the scan is clear, I will have to wait another month before I can say that I’ve been cancer-free for two years, since my tumors were obviously alive and well on this date in 2010 when I was diagnosed. Regardless, two years ago, I didn’t know if I would make it to this date. I know I should be celebrating. So why do I feel so…conflicted?

Perhaps it’s because I still don’t know if I will be here two years from now. Perhaps it’s because the fact that I feel healthy and vital and alive means absolutely nothing to the specter of metastatic disease that follows breast cancer survivors like a cloud, especially in the first several years. I felt so healthy the day I was diagnosed, when I was told that my cancer and the rest of me had been enjoying a symbiotic relationship for three to five years. That’s when I learned that it was possible that I had cancer during both of my pregnancies, that cancer might even have been growing inside me on my wedding day. I tried to understand how something in my breasts was trying to kill me at the same time that those same breasts were sustaining another human life, my precious son, with their milk five times a day.

I tried to understand, and I’ve been trying for two years, but on this day I’m just going to throw up my hands. I will never understand why I had breast cancer. I will never understand if I am doing anything useful to prevent its return. I will never understand why I am still alive and others are not. I will also never understand why I have to live with the fear that my coveted status as a “survivor” could be temporary.

There are injustices with breast cancer that have nothing to do with the disease itself. Survivors of this disease are separated from each other, put into various camps that mask the truth of what it means to have a potentially fatal disease. Metastatic patients are marginalized, while those with early stage disease who have lived many years are turned into heroes when they had nothing on their side but modern medicine and luck. In our worst moments, women like me question whether it “counts” if you have breast cancer that doesn’t require chemotherapy. We have trouble banding together because the world only wants to see one face of breast cancer: the grateful one, smiling with a mouth painted in lipstick, scars hidden, pink ribbons in her full head of hair, showing cancer who’s boss.

It’s the pink in our culture that does this, not women who are dealing with breast cancer. It is not our fault that we live in a society so hell-bent on believing in its own promise of meritocracy that we turn illness into a battleground that can be fought and defeated if only you have the moxie. It is not our fault that we are steeped in a collective denial of suffering, in an intense need not to “lose.” Cancer in general, and breast cancer in particular, is different from other diseases in this sense.

When I had epilepsy, no one told me that I would stop having seizures if only I believed in myself. When I had an early-life identity crisis, wondering why I still felt like a “walking person” but my legs just wouldn’t cooperate, no one told me that I was braver than other kids who died in car accidents. When diabetics succumb to the disease, there is no social pressure to believe that they somehow weren’t trying as hard as others living with diabetes. If someone suffers a heart attack and lives, we breathe a collective sigh of relief. With so many other illnesses, we just stop and think, well, there but by the grace of God go I.

That is the only truth I have learned about breast cancer.

It could happen to you. It did happen to me. And not because I deserved it. I was young, and thin and active, I nursed my children, I didn’t drink. If a healthy lifestyle is something to take credit for, then I am left to wonder why cancer got me. I wonder how it is possible to be a size two and yet be told to “try to be skinny” to avoid recurrence. And so far I have survived, and I am of course thankful for that. But that did not happen because I deserved it.

Here’s the thing. We are too focused on doling out credit and blame. The ugly truth behind every “inspirational” story about a breast cancer survivor is the implication that we should be ashamed of those who didn’t make it, even when those people are us, potentially, years or months or days from now. We’ve brought shame into the damn thing.

When I was a freshman in high school, I confessed to my mom that I had heard that one of my friends’ boyfriends wasn’t allowed to come to my house because his parents thought my neighborhood was unsafe. As my mom would do, she calmly proceeded to completely tear me to shreds for the implication that I was ashamed of where I lived. And I realized that wasn’t it—I was ashamed of being friends with someone who would be ashamed of me. And we should be collectively ashamed of ourselves as a society for the way we have framed breast cancer and forced people dealing with a devastating diagnosis to constantly question the content of their character.

The thing is, no one wants to visit my neighborhood, this cancer-land. I am not supposed to even live here myself, not anymore. I am supposed to have moved far away, to be “done.” Regardless of the fact that most people do not visit oncologists every three months, the reality of a rare and aggressive type of breast cancer with a high rate of metastasis to the soft tissues of the body is supposed to be water under the bridge. After all, it’s been two whole years!

But I’m still hanging out here, on this bridge, close to tearing my short, sassy hair out as I think about my upcoming mammogram. I can tell that some (though thankfully, not all!) of my friends are sick to death of having to hear anything out of my mouth about cancer. I write about it here, so I don’t have to talk about it much in person. But I long for the days when illness or disease was just a part of the conversation, a part of understanding what it is like to be close to a person who has had something unlucky happen to her. I wish cancer wasn’t something to be celebrated or avoided, because for people like me, it is just something that is.

I have lived more than half of my years on earth without epilepsy affecting my daily life, and yet the specter of it remains. I think about it almost every day. I feel so grateful for all the friends and boyfriends of my youth who did not flinch over my epilepsy nor deny that it was there. They covered my eyes when strobe lights came on in the club. They waited with me on the ground when everyone else rode the roller-coaster. They reminded me to take my medication. But most of the time, they just accepted me and talked to me and tried to coerce me into bed and did all the normal things that a normal person deals with in her youth. And I recognize that all of those people who knew me then knew me as a person who had epilepsy, and so they will always think of me that way, and love me all the same. No one was waiting for me to get “better.”

Why is cancer so different than other things? It must be our fear that makes it so. No one questions why I still kick the leaves in the fall; no one says “but Katy! It’s been almost 28 years since you were in a wheelchair!” When I used to have a hard time finding pants that fit a skinny girl with a big behind, I would get frustrated with all of the sales associates who tried to sell me jeans to hide my ass. I don’t want to HIDE IT. I want to find something that FITS.

When we are having brunch with friends and Gabe proceeds to finish not only my leftovers, but those of our adult guests and even their children, the reason behind it is explained, laughed about, and understood. Oh, you know my husband with the gorilla arms, the guy who should be much taller than 5’9”? Why don’t you tell them why you eat like that, honey.

Well, a long time ago I was hungry. I didn’t have enough to eat for an extended period of time. It stunted my growth. So I can’t stand to see food wasted. Now give me that enchilada.

Gabe knows what our friends know: that was 25 years ago and yet, that was yesterday. Gabe knows what I know: That could be tomorrow. So it is with cancer. I don’t want to get over it. I want to figure out how to live with it. I think, so far, I’ve done a pretty damn good job.

I don’t believe that we ever really get over our losses, not the big ones, not the ones that remind us of the only sustaining universal truth. Our biggest losses remind us that we will die, that our lives are temporary, and that everything we think of as important is just a short glimmer of light. Those losses are folded into our sense of ourselves.

So let’s take the Big out of the Big C. One in two people—that’s right, half of you—will have cancer at some point in his life. Some will have it in old age. Others will deal with it as children or in the prime of their adult lives. Some will be done in by it, but some will not. You don’t know who you are. And you can’t take credit for being in that half or the other one.

When talking to a friend who was recently diagnosed with breast cancer, I said that the most frustrating thing to me about the notion of being brave and awesome and fighting the disease was this: Did anyone really believe that this cancer was chosen for me, in order for me to beat it? Does anyone really believe that there is something in me personally that can take the treatment, that can win? That my cells will be more cooperative because I’m a badass? There is no KatyDid cure for breast cancer. I took the same punishment as everyone else. I didn’t do it with any more or less dignity than they did. I hold on to the same desperate hope that it somehow worked.

Look, I’m not trying to be a wet blanket here. I have had so many people who supported me through this, who still talk to me after all I have done and all I have said here in this blog. I know why it’s hard for people to imagine that I might die from breast cancer. It’s hard to believe because I’m young, healthy, attractive, because my kids are little, because I look just like other people my age, because people can talk to me, because they like me. I can laugh about one of my ex-boyfriends telling me I’ll be fine, because, after all, only the good die young. And therefore I should live forever.

But cancer just doesn’t give a shit about any of that.

I will try my best. I will live well and try to be healthy. But as my recently diagnosed friend said, well, I’ve been living healthy and eating well and staying skinny for 36 years. And yet I still have breast cancer.

I will speak to women with metastatic disease and realize how badly they wish they were like me. I will also realize that at some point, most of them WERE like me. Most were not diagnosed at stage 4 initially. Surviving breast cancer for two years means just that. You have survived two years. Every two years that passes is an achievement that the normal population takes as a promise.

I feel so deeply implanted in the prime of my life. My body, my hormones, my brain, are all functioning at the level of a teenager, an 18 year old with her whole life ahead of her.

And yet.

At 18, when I first started taking birth control pills, I could not foresee breast cancer. At 5, I could not foresee epilepsy. At 8, I could not foresee the need to learn to walk again. Things happen that we cannot foresee nor understand. Things happen that are outside of our control. Things happen that are unfair.

And so we march on, aware of the nature of luck in our lives, the good and the bad. We are thankful for the very medicine that brought us to our knees. We are grateful for those who were willing to use their bodies as experiments so that ours would have a chance to thrive. We are angry that there is much more focus on awareness than research, as if being aware of something can make it go away.

We think about two years differently than you do. It’s such a gift, and yet such a fleeting instant. It’s more time than we could have imagined at the beginning, and yet not nearly enough. It’s the timeframe during which our children will learn 95% of everything they will ever need to know, and yet it is the time that they will never remember.

Just as I could not envision myself this way two years ago, I wonder, in the real sense of the word “wonder,” filled with trepidation, excitement, and mystery, what, if anything, I will be like two years from now. I don’t want to die, or to think about dying, when I look and feel so young. Not yet. Not in two years, or ten. I want to grow old. Just like you. I’m just less sure that I will make it. Because I had breast cancer. And you didn’t.

I’m ending with another poem. I wrote this in 2010, when I had breast cancer, but didn’t yet know it. Cancer could not teach me a truth that I already understood: This body, this life, they are just on loan. Whatever you’ve got, you’re just borrowing it, baby.

So be thankful for your years, and angry at the scourges that threaten them. Be real.

News

There is a world where news is made, where history occurred.

Kenyan hospitals imprison impoverished mothers.
We scrape leftover food from colorful plates.

1940s Leningrad saw cannibals hiding in the streets.
I braid our daughter’s hair.

Fifteen people were shot in this city last night.
Leaves fall softly onto our shoes.

Grief overtakes our friends, neighbors, the woman in the park.
Our infant son has eyes that change color in the light.

Authors debate evil: Hiroshima or prison camps? Knowing or not knowing?
We make love every night.

We read in search of understanding.
Why were we given this life, and when will it be taken away?

There are too many days, or too few, depending on the circumstances.

Day 719: Cancer Cold

When you're a married woman, there are few things more annoying than the man-cold. You know what I'm talking about...when your husband is convinced no one has ever been as sick as him (that one doesn't fly too well in this house, for obvious reasons), and he can't do anything, and the kids are easier to deal with when they're sick. Now, Gabe has gotten much better about his illnesses. I don't usually feel like killing him when he has the flu. However, I am not the most sympathetic spouse in most circumstances. I've just had too much shit happen to feel bad for him when he doesn't feel well, and I know that bothers him, but hey, I never said I was perfect.

One night this winter, as one of the only snowstorms of the season descended upon us, Gabe decided to ride his bike to the dentist's office. A few minutes after he left, I got a call. A desperate-sounding person was asking me to help him up the hill. His chain had broken and he wiped out right in front of our house. I know he was in a lot of pain. His entire side was ripped up, his hip was badly bruised. But. Augie was so sick with what turned out to be bacterial pneumonia that I thought he would choke to death. He was crying, saying, mommy, please help me stop coughing. Then Gabe was lying on the ground in the living room groaning and Lenny was looking around wondering what kind of madhouse she was living in, and I told Gabe, very calmly:

"EITHER STOP GROANING IN FRONT OF THE KIDS AND SCARING THEM OR FIND SOME WAY TO GET YOUR GIMPY ASS UPSTAIRS! UNLESS YOU NEED TO GO TO THE EMERGENCY ROOM, IN WHICH CASE I WILL TAKE BOTH YOU AND AUGIE AT THE SAME TIME!"

Or something to that effect. I sat there dreaming of teenage boys, wondering when one would come along to shovel my enormous driveway so that I could actually get the car out to drive to the hospital. A little while later I saw the fifth grader next door shoveling us out without being asked, and I understood why Lenny was so head over heels in love with him.

So again, there are few things more annoying than the man cold, right?

Except, maybe, the cancer cold.

Cancer survivors seem to fall into two camps with illnesses. There are those who have severely compromised immunity for a long, long time, and they contract every illness around. Then there are people like me, who can honestly say things like: "I don't get sick. I just get cancer."

Seriously. Everyone around me is always sick with something--my kids, my husband, my mom, my friends, my kids' friends, my co-workers. And I NEVER CATCH ANYTHING. Then all of a sudden, I have a day like yesterday. I came home from work and just felt weird. My throat hurt and I had a headache and was dizzy. I felt like I had a fever, though I didn't. I fell asleep on the couch at 7 pm, right after dinner. I woke up around 8:30 and went to my real bed, watched a little tv, fell asleep again, woke up at my normal time and felt ok, went to work, went to the gym, even. As the day wore on, I got that vague feeling of sickness again. Right now, it's hard to talk. My throat is hurting more. I have a slight fever, my glands feel swollen, my head feels like it's swimming and it's hard for me to focus my eyes.

I have a cold, right?

I am hosting a visitor from Canada tomorrow at work so I have to be there all day, but I made an appointment with my general practitioner on Thursday to make sure I don't have strep. There's no way in hell I'm missing the Listen to Your Mother performance on Sunday, May 6, so I have to be healthy. You guys are all crying if you didn't get tickets. It's going to be amazing. Speaking of crying, during our second and final rehearsal on Sunday, there was talk of the need for an intermission after my piece due to the copious amounts of crying it induced. I don't know whether to be proud of that or disturbed, but I guess that means it moved people, right? So anyway, I have to get on antibiotics if that's what's going on here. There is something I have to say, and someone I need to say it to, and that is going to happen no matter what else is going on in the world.

Why am I writing about this, something so pedestrian and uninteresting? Well, because there is no such thing as a cold for me, not yet. You all get colds. I get cancer.

I feel these swollen glands and I think about my lymph nodes. My head feels so strange, not like a normal headache nor a normal bout of congestion, but something in between. I literally feel like I can't see. And I think about brain tumors. My body hurts, but only vaguely, nothing that shouts out that I have a 102 degree fever and therefore my body should hurt like it does with the flu. And I wonder about bone cancer. Then, I wonder if there's some kind of breast cancer metastisis that could lead to all of these symptoms at the same time.

You can tell me I'm paranoid, or ridiculous, or that I'm a hypochondriac. You can tell me to get over myself. But I ask you this: Why wouldn't you expect the worst sometimes, when some of the worst has already happened? I mean, everyone said it was just a clogged milk duct, mastitis at the worst. Oh wait, sorry...it's cancer. No, not one tumor. You've got three. No, not the normal kind that we can treat with maintenance medications. You have something more insidious, rare, and aggressive, something we don't really understand. But wait, I don't feel sick at all, I feel great, I am healthier almost than I've ever been!

I don't get colds. I get cancer.

Yes, I know it's been almost two years. I am more aware of that fact than anyone. In less than two weeks, it will have been two years since diagnosis. Two days after that, I will perform in the Listen to Your Mother Show. Two days after that, I will have a mammogram. Normally, I would be just so nervous and panicked about that test that I would be acting like a crazy woman anyway, but I have been trying SO HARD not to think about it. I have been having pain in my breast and I tell myself it's just because of my cycles, even though the pain is completely different and is more likely related to scar tissue. I am purposely not feeling for lumps. After all, I am going to have about 57 breast exams in just a few weeks, and what's a few weeks? I remember Gabe telling me he had felt my lump when we were making love a few weeks before I felt it, but he didn't say anything because he assumed it was a duct, and since I was nursing, he didn't feel it the same way again. I know he still feels guilty about that. But a few weeks didn't make any damn difference, not really. And I have things to look forward to, damnit! I am so close, this close, THIS CLOSE! to two years! I have to make it, I WILL make it with no evidence of disease, because I have been waiting with bated breath every day of these almost two years to be able to say that. You can't take that away from me! Right? Or maybe I should say, please?

But you know, there are so many before me who thought that who were wrong. So many who did the right thing, and lived the right ways, and were beautiful and strong and feisty and amazing and their damn cancer metasticized anyway. And there is no way to know if you will be one of those people, until you either are...or you aren't. So colds bring these fears out, because people like me rationally know that it could be something else. My mom has a friend who is a doctor who told her, there is no such thing as a simple headache after cancer. And that's the truth.

So that really is more annoying than a man cold. Stupid cancer.

It makes it hard to talk in normal ways sometimes. On the one hand, you get tired of all the people who ask "How ARE you?" like you have just emerged straight out of the grave. What is there to say? I never know. I mean, I realize that when people ask how you are in a normal situation, it's expected that you say fine, or great, or whatever, because everyone knows that the person doesn't really give a shit how you are. That's the point of small talk. But if you've had cancer, people do care, in the sense that when they're asking you how ARE you, they are asking, do you still have cancer? Can I move on to the next subject or do we have to get stuck in cancerland?

And the problem is that the answer is somewhere in between. I AM fine. Most of the time, I AM great. My life is normal...most of the time. But there are aspects of it that are not normal. When someone asks, how ARE you? I want to say: well, right now, and for the next two weeks, I am kind of...terrified. I am living in limbo. I am distracting myself with all kinds of really meaningful, time-consuming things, in part because I need to distract myself. I am worried in a way that I know you don't understand. I am in denial, or maybe it's not denial because maybe I'm really fine, but I am trying so hard to assume that I'm fine that it feels like denial.

Because, you know, I have to have a mammogram, and the first time I ever had one, I found out that I might be dying. So...that's how I am.

But I don't say any of those things, because it doesn't behoove me to be insufferable. Here's an example. I went with the kids to get haircuts last week. (Don't we look cute all cleaned up? And, for that matter, don't you love the picture Lenny took of me? I know now how she sees me! Crooked and crazy!) Now that I've committed to being a short-haired woman, I go every six weeks or so, but the kids hadn't been in 5 months. They went first, and I got them situated reading books (Lenny was actually reading, of course, and Augie just makes up insane stories, talking at the top of his lungs) when it was my turn. My stylist asked how ARE you, and all the thoughts I mentioned above went around and around in my head, along with thoughts of panic and despair over not having sold or rented our other house, issues with our jobs, worrying about what we will do about child care after school when Lenny starts first grade next year, and everything else.

And I said, "Well, I am really in need of a haircut."

What else could I say? After all, I'm not a man. I don't do well burdening others with my shit. I write a blog instead.

So now you understand why I rarely ask anyone How are you? When I'm leaving water aerobics and I see my dear older friend changing for the class after mine, I don't ask her that. When I see another parent getting his child dressed to go home from school, I don't ask him that. When a friend I haven't seen in a long time gets in my car so we can go somewhere, I rarely ask her that.

So what do I ask? Something along the lines of the following theme, a question that usually leads to a not-so-short answer that is often just shy of the truth:

"Are you ready?"

Day 395: One Year Cancer Free

In one of my very first blogs, I related the story of how I learned about the concept of the future when I was nine years old. I was wistfully watching other kids jump in the leaves, and I lamented that I couldn't do that. My mom told me I could jump in leaves next year, and the world of possibilities opened up for me as I realized how different life could be in the future.

I kind of feel that way today. One year ago today, I had three cancerous tumors removed from my breast. Though I had to go back less than three weeks later for a re-excision, we learned during that second operation that there were no cancer cells remaining; the surgeon just wanted about 1/4 cm more clearance away from what had been the tumor site. She took a big chunk to get that 1/4cm, but I wouldn't have cared if she just took a third of the whole breast at that point. So after we received that pathology, I realized that I had indeed been cancer free since June 4, as far as anyone knew.

It's hard to imagine life being more different than the difference between June 4, 2010, and today.

My lumpectomy blog gets a lot of hits. A lot of women must be searching for answers that their doctors don't provide, because every other day or so a stranger is sent to my blog by googling "lumpectomy blog." However, it is one of the few blogs that is just too hard for me to read. The fear, the pain, the sheer number of procedures, the dread of waking up and looking for the damn drain, not knowing if cancer had spread, not knowing my stage, being doped up on drugs, unable to walk into the house by myself, the knowledge that my cancer treatment had only just begun, and I was about to embark on chemo but I had no idea what to expect. I was still mourning my hair, still waking up in the middle of the night terrified. I cried all the time. If the future was there, it was hard for me to see, at least the part that didn't involve poisoning myself or suffering through treatment. I hope the blog helps the women who find it, but it pains me, so I avoid it. June 4, 2010 was just a harrowing disaster, starting at 5 am when I had to get up to get to the hospital.

And then this year, I slept in a little. I made chocolate chip pancakes for breakfast. Lenny and I went to get our hair cut--she is five years old and has never had a haircut in her life (this picture shows how long it was before the haircut; now it's the same, but three inches shorter). My hair was getting so curly and thick and out of control that I couldn't take it, so I had it cut super-short. I told the stylist that I used to dread getting my quarterly haircuts because I was afraid that she would cut too much, or it would be too short. Now I just don't care. Cut it, cut it! Why not? What do I have to lose? One of my neighbors, an older woman who had breast cancer years ago, remarked on my short hair several weeks ago and said she liked it. I said, I am getting used to it, but it seems so short. She shrugged. Well, you've had less.

And isn't that the truth. I've had a lot less, in general, and very recently. I've lost so many things, and gotten most of them back, and I find I don't miss the other things nearly as much as I expected. Life now is just much fuller, much more, than it was a year ago. After the haircut Lenny and I walked home. Augie and Gabe came home from toddler soccer and we all went to the pool. I put the kids down for their naps while Gabe went over to meet some contractors at the other house (thank God, it's definitely his turn), and I sat down to write this blog while munching on some grapes.

How far this seems from a year ago. I just can't let myself think about going back there, even though it's hard. I saw my ob/gyn the other day for my regular annual exam, and he was just beside himself. The last time he saw me was shortly after my diagnosis. For a while, he called to check up on me and always seemed concerned and surprised that I was so down, so scared, so sad. He tried to talk me out of that with the positive cheerleader speech. I don't begrudge him that. But except for the fact that I had long hair, I pretty much looked exactly the same a year ago. I weigh the same, my breasts are still pretty much the same size, obviously my face hasn't changed.

Like everyone else, he just doesn't see it. I wouldn't recognize you on the street, he exclaimed! You have never looked better! You must've lost 50 pounds! (Um, yes, since right before Augie was born--over 60, in fact. But again, a year ago, when you saw me, I weighed what I weigh now). He didn't believe me. I think he must have been so distraught last year that he didn't see me at all. He went on and on about how at peace I seem, how sophisticated, how stylish. He said he was so proud of me, and I should be an inspiration for other women, and all of this stuff. He hugged me and kissed my cheeks. He told me to live my life--as long as I didn't get pregnant. I wanted to laugh. Are you kidding me? That's the last thing I would allow to happen at this point.

I appreciated all of this, but what is there to say? How am I inspirational? Because I suffered, or went through some bullshit, or because I have a cute haircut? That's the part of cancer (or epilepsy, or anything) that doesn't make sense to me. How could I help a woman who has late stage cancer, what do I have to offer someone who isn't going to go through this in the same way that I did? It's hard to imagine. I also don't think it's impressive to survive an illness, especially one that can come back and kill you later, no matter what you do. There is no statement here, if that makes sense. My hair isn't short because I'm a new person, a woman reborn. It's short because I am the same--impatient and clueless when it comes to doing hair. I can't deal with it when it's a little longer, so I chop it to avoid dealing with it at all.

This seems true for any of the things that people compliment me about these days. People talk about all the stuff we've got going on, all the drama with the houses and work and kids and everything. But when was I different from this, when did I ever really sit down? What does that have to do with cancer? The only thing I can see is that I feel less insecure these days, due to the massive physical changes I endured over a year and how I just decided not to let them bother me too much in the end. Today, I wore a bikini today for the first time in probably 15 years. I worried about whether I could pull it off for about 30 seconds. Between that and the short hair, I could barely recognize myself. But then I thought, well shit, last year I was walking around bald, until my chicken little hair started to grow in but at that point I had no eyebrows or eyelashes. I put pictures of my marked-up, burned chest on the internet. It's hard to hold on to too much vanity or insecurity after that. Besides, last year I didn't get to go swimming at all--I missed out on the entire summer. I don't remember if I even put a bathing suit on, and all I really remember about sunscreen from last summer was slathering it on my bald head. I felt like a kid going to the pool today, almost as excited, kind of ridiculous.

And at the end of the day, I have to admit that I've had some practice with this stuff before, I guess. I've had a lot of things happen that became a part of me but not the whole of me. I've been noticed for a lot of the wrong reasons. I was the kid in a wheelchair, the one who had convulsions on the classroom floor. I was the 8 year old with red hair so curly all the kids made fun of me and called me Annie and the old ladies stopped their Oldsmobiles in the middle of the street to tell me how gorgeous it was. I was the kid who had night terrors until I admitted I was afraid to die. I am still paranoid about cars, and driving. I made a decision to never drink very much when I learned how anti-convulsants had destroyed my liver (didn't help me avoid breast cancer, unfortunately).

And then with all of those things, life just continued, and it was different from before, but I felt the same. I still feel like I did when I was 6, or 9. I feel closer to those little girls than I do to the woman I was last year. I feel cranky, and I geek out over stupid things, and I still love fruit and chocolate above all other foods, and I consciously think about the breaths that come in and out of my body all the time, and it feels miraculous, in a small and strange way.

I feel cancer free now. I didn't feel that way for a long time, even after it was true. And for all I know, it's not true right now. Some bad cells could be lurking somewhere in my spine, in my lungs. I don't think so, but I don't know. Right now, today, I don't care. I might look like someone else, but I feel like me.

So here's to a June I will get to remember for its normalcy, here's to a summer I won't miss. If there were leaves to kick, I would, but there aren't, so I guess I'll go swimming, row a boat, learn to ride a bike, go on vacation, eat an ice cream cone. I do not plan to live this summer as if last summer didn't happen, but rather like it did, so I will do all the things that were so far in the future just one year ago. And why not? I'm 35 years old, and I get to start the clock over. Kind of neat, really, not worth what I had to do to get here, but neat all the same.