Day 761: Poor Redheaded Stepchild (TNBC)

Breast cancer is pretty damn common. Too common, really. Everyone knows someone with breast cancer. Every woman fears mammograms, fears finding a lump. Young women with breast cancer can feel very ostracized even inside the so-called “breast cancer community,” which isn’t a real THING of course but more of a kind of absurd concept. Women our moms’ age with breast cancer feel sorry for us; doctors do awkward stuff like cry when they see pictures of our kids; we have fertility issues and different career challenges due to our stage in life; people, including other survivors, can become disturbingly obsessed with what cancer has done to our looks. So it’s weird, being in this 2% of women with breast cancer who are under 35 at diagnosis.

It’s even weirder to be triple negative.

Now, I’m not going to claim that being the poor redheaded stepchild (in my case, maybe literally) of breast cancer is harder than being one of the truly marginalized—the metastatic survivors. That is a whole other level of difficult and a whole other level of bullshit. So let’s leave that aside for now. But, as hard as it is to have breast cancer at such a young age, it’s harder to have something that isn’t well understood. It’s tiring being in the 15-25% (even that wide range shows you that the medical community is unsure about what triple negative really is) of breast cancer patients with a “rare,” “aggressive,” “insidious,” “deadly,” or whatever adjective is du jour, cancer type.

I get tired of having to explain. One of the many reasons that I get so annoyed by breast cancer “awareness” is that the focus on that idea has led people who are clueless about breast cancer to think they know what they’re talking about, leading them to question someone like me who might actually know more about the subject, HAVING HAD IT MYSELF. I know what the media portrays about breast cancer, but why do I always have to set the record straight? Yes, I can eat tofu. Yes, I get regular periods, and I could get pregnant, though that would be a huge mistake and potentially disastrous for my health. No, I don’t take any medications. There is nothing for me to take. The fact that I was stage one does not mean that I beat the disease. The fact that I was stage one definitely does not mean I shouldn’t have had to do chemo. No, those risk factors don’t apply to me. Yes I will scream from the rooftops that I believe birth control pills played a huge role.

I sometimes get livid when I read articles about breast cancer that are filled with statistics about risk factors, lifestyle fixes, and other things related to breast cancer. I do research for a living. So I always think, is this for all types of breast cancer? All stages? Pre-menopausal or post? Before age 40 or after? The most basic studies should control for these things, because it is well known that the answers to these questions point the reader to different types of breast cancer that behave in fundamentally different ways. But so many studies just talk about “breast cancer.”

Sorry—that doesn’t help me.

The thing that precipitated this blog is an article that I read that provides some rare and promising news about future treatment of early stage, triple negative breast cancers. It's too late for me to try this, so I am left to wonder if I would have volunteered to take these drugs if they had been offered to me, not knowing if they would help, and knowing they would probably have averse consequences on my strange metabolism that hates drugs. Even though it won't help me, I do take comfort in knowing that they are making strides in helping future generations of TNBC survivors. I do NOT find comfort in the article reminding me that I had “an especially deadly form of the disease.”

Thanks, jackass.

In a way, I’m glad that I went to a large, sterile, relatively anonymous research hospital for my treatment. There were times when it frustrated me, but there were also advantages to the fact that the doctors I was assigned to had seen just about everything that breast cancer could throw at them. Lactating women with cancer? Extremely rare, but they’d seen it. Multiple tumors of different grades? Done that before, no problem. Triple negative and BRCA negative at age 34? Hmm, interesting, but doable. No one ever focused much on “triple negative” with me. Yes, it meant I could in no way avoid chemo and it dictated the type of chemo I would have to do, but they focused on my stage and response to treatment. I realize now that my being triple negative was at the top of my doctors’ minds, but they chose not to dwell on it. My monotone, unsmiling oncologist would acknowledge it sometimes, saying things like “well, it’s true that there are no maintenance medications for you. But maybe that’s a good thing in your case—you won’t have to take more medicine that you might react badly to in the future.”

Um, thanks?

Here’s what I still find frustrating. WHY is triple negative breast cancer more aggressive and deadly? Or more precisely, HOW is it thus? What I mean to ask is this: is it aggressive in the sense that even my stage one cancer is more likely to come back, regardless of the fact that it didn’t spread to my lymph nodes? Is it aggressive in the sense that it finds local recurrence passé and would always choose to metastasize to a distant area of the body, bypassing the lymph system entirely, and going straight to the soft tissues? Or is it aggressive in the sense that it grows quickly? Or in the sense that it is often found at later stages (because younger women who are unlikely to receive diagnostic testing are more likely to have it)? I think, unfortunately, that the answer is all of the above. And that sucks, because being stage one really should count for something. But I can tell you that mine was fast growing. I’m sorry, but that tumor became palpable OUT OF NOWHERE. Oh wait I’m sorry, I meant to say TUMORS. I was in a rare population of women who manipulate their breasts all day—nursing women. I would grab my boobs, contort them, massage them, you name it, to help my crazy, kicky baby boy eat. Maybe he was crazy and kicky because I had milk supply problems due to cancer. Or, maybe he’s just Augie. But the point is, I nursed five to ten times a day for almost a year and never felt it. And then BAM. Hello, cancer. I am not alone in experiencing this—other triple negative survivors have told me that they could almost watch their tumors grow.

So thank God I just stoically accepted my fate and told them to do the core needle biopsy on the same day as my first breast ultrasound, which turned into something else entirely. Because if I had waited, the tumors could have gotten bigger very fast. As it was, it’s amazing that I was stage one with three tumors—though all together they were more than 3cm in diameter, taken separately they were 1.6, 1.1, and 0.6 cm, and breast cancer staging is a like a consecutive prison sentence rather than a cumulative one, if that makes sense. So I got to be stage one. But does that even mean anything with TNBC? Who knows.

Regardless of my crazy bionic tumors, maybe the REAL answer about the aggressive nature of triple negative is all of the above, because some TNBC cancers are aggressive for all of those reasons, others for only just one, or none, of those reasons.

Because triple negative breast cancer is a fallacy.

I don’t believe triple negative breast cancer exists.

Yeah, I said it. Triple negative breast cancer is not a cancer type. It is an admission of ignorance on the part of the medical community. I had a cancer of unknown origin, and my cancer might be different than any other given triple negative breast cancer patient’s cancer.

After all, I am a redhead, not a non-blonde. My hair has a name, and it has extra copper in it, and it is caused by a genetic mutation.

So it is with triple negative breast cancer, in a way. But no one knows the real name yet, or what is in it, or what causes it.

Just think—not twenty years ago, breast cancers were all treated the same. Now, we know that there are at least eight types of breast cancer:

Estrogen + (the overwhelmingly most common).

Progesterone +

Estrogen+ and Progesterone +

HER2+ (possibly more aggressive than TNBC but has known effective treatment)

HER2+ and Estrogen +

HER2+ and Progesterone +

Her2+, Estrogen +, and Progesterone + (also known as “triple positive”)

Estrogen-, Progesterone-, and HER2- (also known as triple negative)

Add on to that BRCA status and you have more iterations and types of treatment.

Triple negative is just another term for “your guess is as good as mine.”

I have theories. One is that I think they should check breast cancers for testosterone receptivity. I wonder if some of us who are triple negative have a slightly elevated level of testosterone that somehow alters our breast cells. Maybe that accounts for my high sex drive, my temper, my inability to sit still, my naturally muscular arms. I have another theory that there is a subset of TNBC that involves young women who were on the pill for many years starting at a young age who subsequently got pregnant very soon after, then spent years either pregnant or nursing. (Here's an interesting tidbit in wikipedia: in one TNBC study, women under 40 who took the pill for more than a year were more than 4 times as likely as women who hadn't taken the pill to get TNBC). You think I’m crazy? That my science is so off the wall that it doesn’t even qualify as “junk?” Well, again, my guess is as good as any at this point. The bottom line is that there are likely several types of cancer underlying TNBC status today, and some are probably more aggressive than others.

Surely, over the years, there have been many women with triple negative breast cancer who survived many years. But at the time of diagnosis they weren’t aware that they were facing something more insidious, aggressive, deadly, yadda yadda yadda. Maybe their spirits weren’t crushed the way some TNBC survivors’ have been. Other breast cancer survivors say unknowingly damaging things to me when they learn that I had TNBC, or that I had multiple tumors: “Oh honey, I’m sorry.” “Wow, that is a rough one, I’m glad I didn’t have that” and so on. I heard one story of a woman who was told by her doctor “just write your will, because your cancer type is difficult to survive.” The woman who related that story to me about her friend was also a TNBC survivor, and she said this: “That just devastated her. But, it’s seven years later. And she’s still here.”

It's possible to look at being triple negative in a positive light: there are hormones, including those such as estrogen that are very prevalent in women's bodies, that do not blow up my cancer. Moreover, I don't have to go into menopause. But, you know, I'm bad at the whole positive spin on cancer thing. And, it's hard to find role models. After all, statistically speaking, there is no such thing as a 20 year TNBC survivor. Because 20 years ago, TNBC didn’t exist. It’s like purgatory. That was a real place, until the church decided “JUST KIDDING!”

So it’s not heaven, nor hell, but somewhere in between. Some of us are still here, still in limbo, wondering if being early stage means a damn thing with this TNBC we were unlucky enough to have. We are getting a little louder, forming crackpot theories, volunteering for clinical trials, warning others about birth control, trying to stay skinny, swearing too much, not dead yet!

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 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.