Day 873: All for Nothing?

I've said it before--this breast cancer stuff is sure a strange trip. Things that are promising and exciting can still manage to leave you with that sense of dread, or fear, or anger, or all three. Things like the fact that there is significant progress being made in figuring breast cancer out, as in REALLY figuring it out, not just talking about awareness and hope and bravery.

Several people have sent me a link to a story published in the New York Times about this research:

http://www.nytimes.com/2012/09/24/health/study-finds-variations-of-breast-cancer.html?emc=eta1&_r=0

Those of us "lucky" enough to be survivors of this disease talk about what is behind this research all the time, even though we are not "experts." We know that this is not one disease. We tell each other, my cancer is so different than yours. I think to myself, I had none of the risk factors (except for early menses, long-term birth control pill use and recent pregnancy/nursing; those latter two having only recently entered the general conversation about risk factors) associated with estrogen-positive cancer. We question why some of us live and some of us die.

And lo and behold, when I talked about the fact that "triple negative breast cancer doesn't exist," it looks like I might have been right. And with that potential truth lies the possibility for treatment for TNBC that will be effective, rather than just a shot in the dark. And yet... how should I feel about learning this? And by this I mean THIS:

The study’s biggest surprise involved a particularly deadly breast cancer whose tumor cells resemble basal cells of the skin and sweat glands, which are in the deepest layer of the skin. These breast cells form a scaffolding for milk duct cells. This type of cancer is often called triple negative and accounts for a small percentage of breast cancer.

But researchers found that this cancer was entirely different from the other types of breast cancer and much more resembles ovarian cancer and a type of lung cancer. “It’s incredible,” said Dr. James Ingle of the Mayo Clinic, one of the study’s 348 authors, of the ovarian cancer connection. “It raises the possibility that there may be a common cause.”

There are immediate therapeutic implications. The study gives a biologic reason to try some routine treatments for ovarian cancer instead of a common class of drugs used in breast cancer known as anthracyclines. Anthracyclines, Dr. Ellis said, “are the drugs most breast cancer patients dread because they are associated with heart damage and leukemia.”

I mean, WOW. So maybe I have more in common with lung cancer and ovarian cancer patients than breast cancer survivors. Those two types of cancer are much deadlier, so that doesn't make me feel better. In the absurd land of cancer, I kind of liked being in the camp where a decent percentage of people survived for a long time. Moreover, it's possible that every single sentence that anyone utters about breast cancer--causes, risk factors, lifestyle fixes to prevent recurrence, treatment, survival rates--is completely meaningless for me and others like me.

And then, there's the thought I almost can't bear to mention:

I might have done chemo for nothing.

Well, at least I might have done AC chemo for nothing. Taxanes might still be a must for triple negative--I do believe they are used for other cancers, such as ovarian, as well. But adriamicin? The one that gave Robin Roberts a potentially fatal blood disease that used to be called pre-leukemia? The one that just completely knocked me on my ass, sent me into early menopause, took my "epic" hair and made me so weak and skinny I couldn't feed my baby his lunch without using two hands? The drug that robs so many women of their fertility--forever? The one that can stop your heart?

It doesn't do any good, probably, for TNBC. Even when I was in treatment two years ago, there was a little bit of a sense that I had to do it because they didn't know better, nor what else to do for me. I was given "options," but none of them involved anything less than months of toxic chemotherapy. And the drugs that do work, these PARP inhibitors, have been around for a while--I remember hearing about them soon after my diagnosis. They were discussed as promising for TNBC but because no clinical trials had been done en masse, they weren't even mentioned to me by doctors. And now, since I'm almost 2.5 years out, it's probably too late. I sit here, itching to pick up the phone and call my oncologist and demand some PARP right now! but I know that he would say something along the lines of "that is not the standard of care today" or "trials are still underway" or "that is all behind you now." But, of course, it isn't behind me. It's right here with me, all the time. And the same woman who wants to pick up that phone is terrified that it might ring, because she doesn't WANT more drugs, she loves how her body feels now, and she wants to just be left alone to her chances.

It's hard to feel so many things at once, all the time, when you're just trying to live your life. I'm so happy that they are figuring this out, that future generations of women will not have to take treatments that cannot possibly help them, and that hopefully fewer women will die from a disease that has been around forever, but that is woefully misunderstood. I think about my daughter, and I might almost weep from relief, if I were a different woman.

But I'm not, so I sit here dry-eyed and think about some of the absurdity. About taking poison for no reason. About staying skinny and exercising in order to stop the chaos in my mind and the jumpiness in my body, not to stave off cancer--because, again, there is no evidence that those things help stop recurrence for TNBC. About how hard it is, sometimes, to relate to people. Because every day I do something that few people do. I just cross my fingers before I shut my eyes to sleep, knowing that I will at least wake in the morning.

I cross my fingers for one more day and that small action is as likely as anything to give me more wakefulness. I live in this Kafka-esque world, where I know that everything I have done, except for surgery, was a best guess fix for a what if scenario for a nameless disease.

And yet, I'm glad I did it--all of it. I did my best with the information available to me at the time. I did what I could, and more than I would have liked. And my body, my hair, my fertility and my sexuality came back to me. For a time at least-- for now. Who can guess when our best things will be taken away? It is useless to dwell on the possibilities.

And so I cross my fingers and bust my ass and on my best days, you would never know. On other days, like today, I feel grateful and I feel betrayed, I feel happy and I feel devastated, I feel afraid and I feel that it is impossible that I might not get to grow old. So, I write this. And then I move on.

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 545: Looking Good

I fully intended to blog about my second post-cancer follow-up mammogram yesterday. However, after spending five hours at Northwestern doing the damn test, then waiting for the surgeon and then the oncologist, I decided to do more productive things instead. So I went shopping, and then I had a beer, and then I took a walk.

Because it was normal.

Well, not normal in normal people language. The box for "no abnormalities detected" was not checked. I got the "shows findings that are probably benign" situation that means look, you had breast cancer so your breast is abnormal, but in the grand scheme of things it looks good. I can't really tell you how relieved I felt, but this is my blog so I'm going to try.

I think that the results from yesterday's test answered the soul-searching questions I was asking in my last post. I felt physically relieved--I felt like I could breathe normally again. I had no idea how scatterbrained I had become, or why, how distracted I was from the rest of my life for the past several weeks. How I held it together like a somewhat normal person for my kids for Halloween is beyond me. I did kind of lose it when they came in after Gabe took them trick or treating on the second block (we went with the kids from the old block first--how about our Wizard of Oz themed costumes, huh?!). I was yelling about dinner, scrambling around doing dishes, altogether acting pretty manic. Now that's not entirely unusual for me, but I was taking it to another level. The kids were so high on sugar I don't think they noticed, or at least that's what I'm telling myself.

I was so out of it that I forgot about a conference I was supposed to attend a few weeks ago. Luckily it was local, and I remembered a few hours later and I didn't miss much. I was a complete mess at work and at home; I was doing writing projects in a half-assed way and even screwing up the damn laundry. It was like I was living that dream where you show up naked at work or forget to take your final exams in high school. Except this was real. I've never been like that! But today, my productivity returned, my memory seemed on target, and I felt more like myself. Maybe not entirely like the old Katy, but who was she anyway? Some crazy lady who never knew how to sit down. I'll always be that human version of a Jack Russell terrier on some level--little and crazy and hyper. I'm just not usually so incompetent, so let's hope that part is over.

The process of getting a mammogram is complete bullshit, if you ask me. It's terrible for anyone, but if you've had cancer it's a nightmare. Why don't they let your husband (or mom, or friend, if it's an issue with not wanting men in the waiting rooms with women in their gowns) wait with you? And why does the test have to be so incredibly painful? This time I only had to have the left side scanned, and until about two hours ago--36 hours after the scan--I still had red marks where the machine had crushed my breast and my breastbone. You have to love a test where they say things to you like "now this one will feel like it's crushing your back." "Now this one will feel like an extreme weight on your chest wall." When they got to the scans that were imaging my tumor site and scar tissue, tears sprang to my eyes. She didn't need to tell me to hold my breath; that was involuntary. I have so much pain there anyway (my surgeon finally gave me a prescription for a physical therapist so I can work on the pain and weakness that I still have on the left side of my chest and my arm); and I have a VERY high tolerance for pain! Ugh. Someone needs to figure out what a similar test would be for men (read: testicle-crushing vise) and then we could see whether mammograms as they are today would be the standard of care. I think we would be headed for the painless 3d ultrasound.

So you wince and grit your teeth while the technician moves you into ungodly positions. Then, you finish, and the woman (I can't imagine a man doing mammograms, even though I never feel that gender matters in medicine. But it's such a violent test with a woman contorting and smashing you that it would seem obscene with a man doing it.) tells you that you need to wait for the radiologist to decide if more pictures are needed, and what the results are. In the meantime you have the following text exchange with your husband, who has been a nervous wreck himself:

K: Done but waiting for results
G: OK. I don't understand why they don't let me be with you. How terrible was it?
K: Hurt pretty bad but it's over
G: I love you. I'll see you soon and you will be fine. I hate the wait as much as you do.
K: You could probably come back it's waiting room C&D (I thought they would allow this since a woman was accompanying her mother, but that was because she didn't speak English. Gabe was ultimately denied entry to the waiting area).
G: OK I'll ask up here
K: Results back I'm fine!! Getting dressed
G: Thank goodness! They won't let me back there so I'll meet you at the doctors waiting room

And that sums it up. The technician had told me that I only had one more six month follow up before I go to annual scans. So look out May 8, 2011. That will be an important graduation for this triple negative girl, who is at highest risk of recurrence in those two years.

I was so relieved and happy when I saw Gabe that I couldn't stop talking. We had all kinds of annoying waiting to do for the other visits, but damn. It was crazy how I suddenly felt like myself, suddenly felt hungry even, how I could tell myself that maybe I might make it out of this mess after all.

Of course, truthfully, for someone who is triple negative like me, I might be more likely to have cancer metasticize than recur locally. But as long as I don't have symptoms of that, I am going to try not to think about it. I kept asking doctors why they aren't doing ultrasounds of my breasts, given the problems that mammography presents for young women/women with dense breasts. Their answers were long and actually satisfied me for a change. The surgeon thought everything looked great, and we talked a little bit about my bout with mastitis. Is there anything that can be done to avoid that in the future? No, not really. A bug bite can cause it. And mouth to nipple contact can cause it too (she said, purposefully NOT looking over at Gabe) so you should concentrate on the other side for that. Right, I said. We got that message loud and clear.

She sent me on my way and I went to the oncologist. Check this out...I actually made the guy laugh. I didn't think that was possible. He shook my hand and asked how I was doing. Great! I said. Well, I'm sick, but otherwise great. He thought this was hilarious. You feel good since it's just a normal sickness, huh? You got that right, brother. He has been growing on me since I've finished chemo. I think his complete lack of human emotion is absurd, and obnoxious when you are dealing with something as terrible as the effects of cancer and chemotherapy, but when you're happy with your test results and you don't need anyone to be understanding, the stoicism doesn't offend so much. He did his exams, undressed me from my gown like always, asked his questions, and surprisingly, answered all of mine. Then he said his normal parting words: You look good. You look really good, especially from a cancer perspective. Enjoy the holidays. You look good.

I heard that, doc. I wanted to say, what do you mean, especially? Weirdo.

I visited my old chemo nurse afterwards, before I headed over to the mag mile. I don't know why I still feel the urge to do that. I have had doctors who have saved my life, helped me walk again, delivered my baby, and I had no desire to ever see them again. But my chemo nurse, and my ob/gyn, are exceptions. I think I just like them, as people. I like to see her, to let her rib me about thinking I would be bald and in menopause forever. But god is it weird to be in that chemo area, listening to the sounds of the machines, hearing the beeps that tell the nurses to increase the saline solution, watching them tap arms, patiently trying to coax the vein out, seeing the women who are cold and bored and sometimes alone and there are so damn many of them, in just that one floor of that one hospital. What bullshit.

Then after Gabe got home from work I started texting teenagers from the neighborhood. I decided we just had to celebrate. Ultimately one of the girls next door came over, and we went to greektown for dinner. I got a huge martini, as you can see. While driving over we realized that the kids had been looking at photos with the babysitter, and there were a bunch in there when I was bald. There was even one the kids weren't supposed to see, of my bruises after surgery. I thought holy shit, I don't think she knows I had cancer! Well, Gabe said, she knows now. We asked her about it when we got home and she played it off like she knew already. Good god, the things I put these kids through. Isn't it bad enough that Gabe gives me those sappy puppy dog eyes in their presence? Then they have to sit there while Augie points out "that's my mommy!" in a photo of a woman with no hair to speak of, until he goes onto the next one: "Daddy kissing mommy!" and again, there's Gabe kissing my bald head. I was loving all the teenagers last night though as I looked for a sitter at that extreme last minute. How great is it that we live in a place where a 17 year old texts me she'll be over in 15 minutes after I ask her to babysit RIGHT NOW, and she puts her slippers on and knocks on our back door to come in? Because let me tell you, last night of all nights, I needed to celebrate, and I needed a drink!

Those who are friends with me on facebook probably saw my rant about the new study saying that moderate alcohol use can increase breast cancer risk. Jesus Christ. Has there ever been a study done on a woman's health issue that DIDN'T try to blame her for her disease? And further, that focused on the so-called sin issues? Shouldn't everyone try not to drink too much, exercise, and eat right? I'm waiting for the study that says: "Save yourself for your husband, or you might risk contracting breast cancer." Or "honor and obey or you will surely get invasive ductal carcinoma" or just "be a good girl or you will get breast cancer!!" I mean shit, you have 30 years to study this disease and that's the best you can come up with? Couldn't you study the environment, additives in food, effects of birth control, or something? And how do you explain the lower rates of breast cancer in countries like France where women drink EVERY DAY?

Can't drink, can't smoke, what can you do? Must exercise like crazy, must go vegan, yadda yadda. I was healthy, and skinny, and nursing, and I was never much of a drinker, and I got breast cancer. A really aggressive kind of breast cancer that was probably predicated on something else, other than lifestyle factors, entirely. So just let me live my life, let a girl have a little vice. I've been hearing this song my whole life. I know there are certain things that trigger seizures, for example. I know that strobe lights are bad for me. But the number one thing that triggers seizures is being unlucky enough to have epilepsy. "Normal" people do not start having seizures from strobe lights, or video games, or roller coasters, or because of insomnia. Sometimes shit happens. Study that phenomenon, perhaps. It would be just as useful, in my opinion: Medical team spends 30 years researching life cycle phenomenon and concludes that shit happens, all kinds of shit, and you just have to deal with it and live your life anyway.

I'll drink to that! Right now, things are looking good.