Day 838: What is That Like?

So, it's still October. That means that it's still the time of year when people should be preparing their inappropriate Halloween costumes and finding yet another way to make trick or treating less fun for kids, but in addition they are buying pink and talking about how important it is to save the boobies.

Those of us who have at least temporarily survived breast cancer who have a voice in the universe, no matter how small, use that opportunity for different purposes. I'm going to use mine this October to continue hammering some things in about what it is really like to have breast cancer affect your life, your likelihood of getting old, and everything else. This time, my message will be brief.

Here are a few small, everyday examples of what it means to be a young breast cancer survivor, from a few different perspectives:

Your mom obsessively reads your blog posts, probably clicking several times a day if nothing new shows up, because she knows that is the only way that she is going to learn what you are really thinking. She has been on hormone replacements for menopause for over twelve years, and yet it is YOU who had breast cancer. She would like to trade places, but she can't. She often asks how you are doing and sounds a little bit panicked each time. She is completely convinced that because you had stage one cancer and did extensive chemotherapy, that your cancer will never return. She hates when you remind her how easily it could return, and always asks the same thing when you tell her about another woman with early stage disease that later metastasized: Was it in the lymph nodes? She no longer worries about getting breast cancer herself, no matter how many aspirations she endures for issues in her breasts.

Your older brother checks the blog often too, and always reads it. He never says anything about it, no matter what strange or uncomfortable thing he has just learned from his over-sharing little sister about her marriage, her teen years, or her body. He asks you if he should donate to certain races or causes when he is asked to do so, wondering if somehow that would offend you. He is back to calling you once in a blue moon when something needs to be decided, but you both remember when he used to call you every day because he liked to hear your voice and know you were still there.

Your husband carries many things within him that he will never be able to discuss with other men, even if they ask, which they don't. He doesn't really want to go to cancer-related events with you, because it is hard for him. This makes you angry with him. He says he would like to act as if the whole thing never happened and you say that's nice, I wish I had that option, knowing that of course he doesn't have that option either, but that he WISHES he did. He jokingly offers to shave the teenage babysitter's head for her if she decides to go that route, but he doesn't really think it's funny. He researches things online and doesn't tell you about it. He cries more than other husbands. You wish you had more patience for all of this, but in fact, you have less.

Your son asks about death a lot, because he is three, and some three year olds do that. He knows you can die from being sick. He wonders if this will happen to him. He says, but you only die if it's a really BAD sickness, right? And your six and a half year old daughter chimes in: No, you don't always die even from that. Mom had cancer, and she didn't die, and cancer is really bad. He nods his head in ageless understanding, and this idea comforts both of them.

Your friends often act as if nothing ever happened, just as your husband would like to do, and that is both good and bad. Sometimes they say the wrong thing, and you always let it go. Sometimes they say the right thing, and you appreciate it greatly: You know, you would have had cancer whether or not you decided to write about it. So, I can honestly say that I like your blog.

You write a blog, because really, what else can you do? You did all the right things in the first place. You have survived for not quite two years past treatment. You hope there is much, much longer to go. You know that no one knows how long she has, but you also know that there are many, many things that have happened to your body that make your chances for a long life slimmer than other people your age. You still love October, even though it marks the anniversary of one of the worst things that has ever happened to you, and is being used to remind you incessantly of one of the other ones. You have cheated death four times.

You are tired of it.

Day 740: Walking for Breast Cancer...Every Day

Yesterday, our family participated in our third annual Beverly Breast Cancer walk. Though we had lived in the neighborhood for years before we walked the first time--five days after I was diagnosed with breast cancer--we had never participated. I didn't know I had cancer when I signed up the first time. I do remember saying something to Gabe like "well, I guess it's good we're doing this. You know, just in case," after I felt the lump in late April. I didn't realize then what was coming, of course. My mom joined the four of us (Augie wasn't even a year old so he was in a stroller, but I honestly don't remember whether 4 year old Lenny walked or went in a wagon) and we did the three mile walk in our neighborhood, literally in a daze. The day before, I had nursed my infant son for the last time. I made Gabe take pictures so we would have that to remember, but I was so sad about what we were losing, and why we were losing it, that I hardly even remember doing it. So, during the walk on Mother's day in 2010, I basically stumbled all three miles, trying not to cry. The whole thing was awful. All of these people were laughing and waving pink flags and talking about saving the tatas and all I could think was that I was going to die. And that someday my kids would join that walk carrying a sign in my memory. I just wanted to disappear.

Last year, things were obviously a bit different. I looked very different, for one. I had hair, but not much. I was done with cancer treatment, not just on the cusp of starting it all. We had a team of 15 or so. Gabe was more emotional than I was--he was edgy for days beforehand and got choked up at several points during the walk, which didn't happen to me. I felt kind of...verklempt, I guess you could say, when I picked up my pink carnation from the survivor's tent. It started wilting before we even got home. People need to think these things through.

This year, things were different still. I was kind of looking forward to the walk, since the route went straight past our house and we planned to have a little party afterwards. We were supposed to have 23 people or so on our team, but there were some injuries and other issues and we ended up with 15 again, and a dog. The walk didn't seem so insufferably slow, and it was a beautiful cool but sunny early morning (south side Catholics, man, make us get up for this kind of stuff super early so everyone can make it to church), and it was kind of...fun. I wasn't really expecting that.

I bought a sign for our lawn and had my name inscribed on it. I didn't tie pink ribbons around any trees or write "survivor lives here" in pink sidewalk chalk. Shit, Gabe even forgot to mow the street-side of our front lawn. A friend who was on my team made these great signs that said "katydid cancer. now she's done" and people took turns carrying them around. I got some interesting looks when people realized the woman on the sign was me. I now have one of these signs in my lawn (still unmowed). I didn't get emotional at all, and amazingly, neither did Gabe. Afterwards, I did something I rarely do and actually put two of my friends to work in my kitchen cutting up fruit while I heated up the quiches I had made, fried some ham, made coffee, and got out the bean-corn-avocado salad and the chocolate chip banana bread, not even feeling embarrassed that all of that homemade goodness was sitting next to three store-bought coffee cakes and a cooler full of beer and Mike's hard lemonade...at 10 in the morning.

Then chaos ensued, and the kids played outside for literally five hours. I don't even know how they were still standing at the end of the day. The moms at the party didn't move from our mimosas or coffee or beer. Dads were put in charge, which meant that of all the things the kids could do, they settled on riding plasma cars down the steep hill of our cement driveway until they almost killed themselves on the pickup truck parked at the bottom, and the dads stood there nodding and talking about whatever dads talk about. No one got injured, though Augie and a few other kids did go flying off to the side into the bushes. I just kind of shrugged, thinking, huh, he'll live, but I also got livid when I realized Gabe was calmly CLEANING CHAIRS when Augie was off wrecking havoc somewhere and I was supposed to be off-duty. Then all the dads went to the park with the kids and we moms just sat there in the sunshine. During the 30 minutes the kids spent indoors, they destroyed the house, but I didn't even care. Gabe cleaned up most of it, I went for another, faster, walk, and then Lenny helped me plant impatiens. After that, I took a nap and woke up at 7 pm in time to read the newspaper while Gabe gave the kids showers, before we both put them to bed.

Ah, Mother's Day.

Sounds idyllic, right? No matter that Gabe and I got in a huge fight over nothing the night before, though I'm sure no one at our house could tell that. We were over it, I guess, though I'm still pissed that it happened, because the last few months have been so ridiculously emotional with everything that has happened that I think I should be spared all elements of marital strife. The mammogram, the show, the two year cancerversary--I was like a twig about to snap. Then, I spent my third mothers day since I found out I had cancer walking around my neighborhood to support something I would rather not think about again. Some people get breakfast in bed. I get a huge dose of reality, room-service style, served up to me every mother's day.

Now, don't get me wrong--this walk is meaningful for me because it supports the small local hospital where I did radiation every day for 7 weeks. I would have had a hell of a time if I'd had to commute to a large research hospital to get decent care. It takes longer to undress than to do radiation itself, so the shortest commute is almost a necessity. The radiation oncologist at this place is absolutely excellent, and he has a decent bedside manner to boot. They had that nice spa service while I was doing treatment there, and I got free massages and pedicures for months, which was a great bonus and a nice way to have some "positive touch" while my body was being burned and fatigued. And this hospital could use the money, where the big ones kind of have it coming out of their ears. And it's nice to see everyone in the neighborhood where you live supporting your struggle, even if it's just on the surface. The local Starbucks had a tribute to women with breast cancer and a few folks put my name on ribbons that were displayed in the shop, and I don't even know who did that. Things like that are actually meaningful, much more so than all the damn pink in our culture. The Starbucks thing is also funny, because all of my "names" were there: Katy Jacob, KatyDid Cancer, and even "Katy Sterritt." People will say "but your name isn't Katy Sterritt." Look, I know who they're talking about. Gabe isn't Mr. Jacob, after all, and he always answers to that without an issue. One of our babysitters said to him, you must be Mr. Jacob, and he said, well, I suppose you could call me that. And then we left.

Choose your battles, if you have the opportunity to choose them.

Sometimes, you don't. And you fight a battle that isn't a battle and you fight something that isn't a fight but that's what people call it. It's a disease, and it kills people, 40,000 women in this country every year, and it forever changes the lives of those who are diagnosed with it and are lucky enough to survive. It makes you suffer and it makes you afraid. You walk three miles, something you do every day, and your breast hurts because it always hurts. Your arm pulls because it always does. You are just trying to walk and eat pastry and yell at your husband and put your hand over your eyes when your kid does something crazy and live like everyone else. It doesn't feel like courage, and you don't feel like a badass. The best case scenario is that you feel kind of...normal.

Just kind of, not entirely normal, because people are telling you they are happy for you, and it's your face up on that sign, and your 6 year old daughter knows all about the hospital the walk is benefiting and could tell you all exactly--EXACTLY--what radiation is. You look like everyone else on that walk, you are all wearing the same shirts and your hair is long enough to let you pass, and it's possible that no one would "know." But what is the point of that? So you walk to the survivor tent again, relieved that someone had the sense to opt for ribbons instead of flowers. You are shocked and saddened to see so many pink ribbons, and to realize how many women are walking around who are just like you. A man asks "so who is the survivor here?" and you raise your hand and he tries his best not to suck in his breath and he tries unsuccessfully to hide his surprise because, you know, you're young. And those adorable little children belong to you. And he knows that it's bullshit, because he must love someone who had breast cancer or he wouldn't be working the tent, and he asks you how long. "Two years," you say, somewhat surprised to hear those words come out of your mouth and realize they are the truth. He gives you a high five. And then he looks at you a little longer than he should, and he says...

"You look great."

Because that is just what people say. And something has shifted in you, because it doesn't even bother you. You smile and say thank you and walk home, representing for breast cancer, because that is what you do every day that you can still walk around.

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 525: Pink This! October and Triple Negative Breast Cancer

I've decided that if I'm going to write any more blogs this month, it's going to be to provide a perspective that's different from the bombardment of pink that anyone fighting breast cancer confronts in October. Because, really, we are all very aware of breast cancer. And we are aware that others are aware of it, and yet, all of the marketing, the selling of pink products, and the hype has not fundamentally changed the reality of what it means to have breast cancer.

In another blog, I'll write about how the pink teddy bears obscure the grim reaper, how women who are dying of breast cancer or are coping with metastatic disease are often left out of the stories of hope and inspiration. Pink culture makes a hierarchy of breast cancer survivors, of which "survivor" is a crucial moniker, along with the "positive attitude" and "inspirational lives" that we are all supposed to be leading. I will write more about that later, and about how there is no bravery or inspiration inherent in this fight to save the life you didn't even know was in jeopardy. Today, I'm going to write a little bit about what it means to have triple negative breast cancer, to literally be the poor redheaded stepchild in this whole breast cancer family.

Statistics can be shocking things. As a person who does research for a living, I am fond of them, and yet I know that they can be manipulated, and that they might mean little to the individuals represented by the numbers. But I think they are quite worthwhile when trying to open up the conversation about breast cancer, a disease that people often lump (pun intended) into one group when it is in fact several diseases, maybe dozens.

Statistics have not been on my side with breast cancer. Only 2% of women with breast cancer are diagnosed under age 35. Check. Approximately 15% of breast cancers present as triple negative, meaning they are not receptive to estrogen, progesterone, or HER-2 (and meaning that there are no specific maintenance medications or specified treatments for those cancers). Check. About 10% of breast cancers are multifocal (more than one tumor present, originating from the index tumor). Check. And I'm sure there is some miniscule number of women who are diagnosed with breast cancer while lactating. Check.

Why am I bringing this up? Well, when I found out I was triple negative, it didn't mean much to me. As I learned that my cancer was the most aggressive kind of invasive ductal carcinoma, I tried to ignore the articles on the internet that told me "women with triple negative breast cancer often have poor prognosis." My medical team did not mention my triple negative status very much when describing my treatment plan. They didn't want to talk to me about prognosis at all. Once I knew I was stage one, that was considered very positive, especially when the second surgery cleared my margins. My gruff oncologist told me that I would need to be watched closely for a long time, because I was young and he expected me to live to be old, and therefore I had a long time for my cancer to come back.

That might be true for most breast cancers. But the reality is that there is a high incidence of recurrence, even for early stage cancer, for triple negatives, in the first three years. Likelihood of recurrence starts to fall off at that point and becomes almost nonexistent after eight years (estrogen positive cancers have been known to recur 15 or even 30 years later). I was also told that I should be extremely glad that I was not BRCA positive; everyone was pretty surprised about this, as there's a strong link between being triple negative and have the BRCA mutation, especially if you are diagnosed at a very young age. But here is another statistic. The American Cancer Society puts the five year survival rate for women with stage one cancers of all types at 88%. Mind you, that means that more than one in ten women with early stage breast cancer that did not spread to their lymph nodes will die from cancer within five years.

It gets more interesting, though. A recent study compared triple negative women with the BRCA mutation to those who did not have it. Of those who DID have the mutation, the probability of going five years without recurrence was 87%, and the probability of living five years was 73.3% (those numbers seem backwards to me, but it shows that recurrence is not a requirement for breast cancer to kill you). For those "lucky" triple negative women WITHOUT the gene, those percentages dropped to 52% and 53% respectively.

You read that right. Now, the study included women with all stages of cancer, not just early stage. Still, those statistics are telling me that, just like the movie title says, I have a 50-50 chance of making it to my 40th birthday due to the aggressive nature of the type of cancer I was unlucky enough to have. The statistics are also telling me that being BRCA negative is actually a bad thing for women with triple negative breast cancer. This implies that our cancers are feeding on something else entirely, and no one knows what it is. At stage one, almost everyone I encounter assumes I am fine now, I fought off the beast, I will live. But knowing what I have just told you, how would you like those odds?

For years, we have known that black women have a much worse mortality rate for breast cancer. It had been hypothesized that this was due to socioeconomic factors or access to healthcare and screenings. Today, many researchers believe that it is actually because black women are so much more likely to be triple-negative. Because triple negative cancers are often of the highest, most dangerous grade (surprisingly, two of my tumors were only grade 2 on the 1-3 scale, while my one non-invasive, DCIS tumor was grade 3) and are often also of the frightening "basal-like" cell type, they are less understood and much more insidious. They are likely to occur in young women, who are in turn unlikely to receive routine mammograms. They often are caught in late stage and are resistant to many treatments.

Moreover, when thinking about how breast cancers grow, most doctors look at an average. I was told my cancer had been growing for approximately 3-5 years. And yet it seemed to pop up out of nowhere. I have talked to triple negative women who have seen their cancers double in size in the month's time they were waiting for surgery. Many triple negative women can almost feel their tumors growing, but we are told that is impossible. I think it is entirely possible that I had cancer for a year at most, doctors be damned. We are also lumped in with other survivors when told how to manage our cancer. Yes, we can eat tofu, and no, we don't "have" to take tamoxifen, but we are still told to limit alcohol intake, exercise, and eat well. (Shouldn't everyone do those things without feeling like a guilty moment of excess will lead them to an early grave?). However, diet, drink, and overweight are risk factors for ESTROGEN POSITIVE breast cancer. There is evidence that extremely high BMI for post-menopausal women (BMI over 35) is a risk factor for triple negative breast cancer, but no real evidence of "lifestyle" factors that significantly affect triple negative disease exists. After all, I was nursing a baby, hanging out with a BMI around 19, when I was diagnosed.

Much of what everyone knows about breast cancer is largely irrelevant for triple negative cancers. Rumors and misinformation abound. A co-worker whom I recently met who is a 2-year triple negative breast cancer survivor suffering from a recent case of lymphedema was told by her doctor that only black women get the disease. A coworker of Gabe's was told by a friend it was good she was diagnosed now, not seven years ago when she dealt with her triple negative cancer, because her doctors told her to write her will and get her affairs in order.

How much pink goes towards figuring out what the hell is going on here? I was an active, skinny non-drinker nursing a baby when this thing came on. STOP focusing on supposed lifestyle factors, researchers. Something else is going on, something in the environment, or something related to pregnancy, or testosterone levels, but breast cancer is not about being an overweight inactive person. If the pill is a lifestyle factor, I am all for studying that one, since the link to triple negative seems highly relevant. But how much interest do we have as a society in discouraging women from taking the pill? How likely are we to start researching invasive birth control methods for men, or getting over our notion of spontaneity and firmly pushing barrier-based methods? This is a society that cannot deal with women and sexuality, to the point where the only cancer vaccine that has ever been developed is being denied preteen girls because we don't want to think they will go and have sex. Guess who will be getting her Gardisil in a few years? That's right, Lenny. I would rather protect you from sexually transmitted diseases and cancer AND teach you to force guys to use a condom AND enjoy sex when you are ready for it AND respect yourself. You could go your whole life without having sex or start having it at age 14 and I would still love you and want you to live.

It is frustrating to realize that it seems that even with estrogen-positive cancer, the most common type, breast cancer is an entirely different animal for those under 40. For triple negative, the reality is worse. You are forced into extensive, harsh chemotherapy regardless of your stage. Some studies show that that chemo will be extraordinarily effective on your tumors...about 40% of the time. The chance for recurrence is great and misunderstood, and the risk factors are unknown.

When someone asks me if I am in remission, I have no idea what to say. I recently agreed to do a short radio spot about being a breast cancer survivor. The woman interviewing me asked me if I thought I was cancer-free. I have no idea, I said. I have to assume so, until I know otherwise. One of the ROW coaches passed on information on a commercial audition for GE for cancer survivors. One of the first questions was, have you been in remission for at least a year? But really, no breast cancer is truly in remission. It is a type of cancer that can always return. Triple negative is less likely to do so, and as I said, almost entirely unlikely to recur if you make it 8 or 10 years out. In the meantime, you live with that IF, no matter what you do.

I have been very tired recently, peeing all the time, sluggish. I probably have a cold, and my period is due soon, so it could be that too. I might worry about being pregnant if I ever let Gabe anywhere near me without a condom or if I thought it was possible to still get pregnant, despite my so-far regular periods. But I am not your average 36 year old woman with average concerns anymore. I had this thing called triple negative breast cancer, so I have these symptoms and I worry that cancer has spread to my liver. Triple negative is much more likely to spread to the soft tissues, such as the liver, lungs, and brain, than to the bones--which is a terrible fate for women who find they have metastatic disease, and yet is much more treatable in the short term.

Everyone reading this knows I am not a support group person. That is just part of my nature, but another reason for it in this instance is that I find breast cancer groups to be very frustrating, since most of the advice is not relevant for me. I read somewhere that having triple negative breast cancer is like being seated at a separate table at a restaurant, watching other people eat steak while you live on bread and water. And of course it's terrible for anyone to have breast cancer. Early stage triple negative cancer is infinitely preferable to late-stage anything else, but it still makes you feel like an outsider, even in the "club" you never wanted to join.

It is hard knowing that much of what has been gained in understanding breast cancer will not benefit me, even if that sounds selfish. The ACT chemo I did was not designed for triple negative, though taxanes are considered a must, albeit a damn toxic one. No maintenance meds, no real restrictions on pregnancy or birth control method, really a lot of nothing, for us triple negatives. It is better to be free to live my life, in some ways, but daunting too, as I count down these days and see if my aggressive form of cancer decides to morph into something else. This 50-50 thing can make a woman tired.

These are the things I think about when I see pink advertisements for used cars or find the "do this for the cure" taglines everywhere. Here is the reality of decades of pink. According to the American Cancer Society, the mortality rate for women from breast cancer is about 25 per 100,000 today. The rate in 1930?

25 per 100,000.

While they might not get as much hype, mortality rates for women for cervical, uterine, and stomach cancer have reached under 5 per 100,000, down from the high 20s and 30s around the depression. What has all that pink money achieved? How aware are people really, how much do any of us know about breast cancer? I had no idea that triple negative breast cancer existed, and it took me a long time to understand what it meant even when I was diagnosed. Shortly after I showed up to work bald, a ballsy co-worker asked me what kind of breast cancer I had. What do you mean, I asked. Well, you know, there's the breast cancer where you will most likely be fine, and then there's the kind that's really bad, where you don't live very long. Which do you have?

I have the bad kind, jackass. Can I offer you a pink beer to thank you for your support?

Now don't get me wrong, there is one aspect of the pink that even this triple negative girl loves. It gives people who care about you a way to show you, when they are at a loss and don't know what to say. I learned recently that an old friend and colleague I haven't seen in years wears a Komen ribbon for me on racing days and thinks of me and my struggles when he runs. It's always touching for me to learn that, especially touching, somehow, when men feel that way. Someone lives far from you and can't help you out, make you a meal, or watch your kids. Pink gives them something of you to share. It's meaningful, and the love is important.

But there is nothing to love about breast cancer. October was always my favorite month, though it marked one of the darkest times in my life, since I was hit by a car on October 11, 1984. Our October in Chicago this year has been phenomenally beautiful, warm and sunny. But pink culture in October just makes me want to say, how aware are you that as you sit talking to me, I am concerned, rightfully so, that I might not live to see my son enter kindergarten? What pink is there to wash that fear away? It is not paranoia, or a bad attitude, that makes me feel this way. It is the reality of breast cancer, after the pink has been laid bare.

This photograph of Lenny and me was taken on New Years in 2010, about four months before I was diagnosed with triple negative breast cancer. Can you tell that I had cancer then? Where is the cancer in this picture? You might not be able to see it, but it was there all the same, trying its damnedest to do me in. The fact that you can't see it in me today does not mean that it isn't there; the fact that I feel very healthy most of the time does not mean that I am cancer-free. That is the reality of living with an aggressive form of breast cancer. You might call it a downer, I would call it a dose of the truth. So to all the women with breast cancer who are told they look amazing, that they are beautiful and wonderful and talented and smart, I would like to say this: Yes, you are. But this October, I know all too well that you would rather be ugly, lazy, stupid, and useless if it meant you wouldn't have breast cancer. So, this un-pink blog's for you.