Day 1,057: Angelina Jolie and Me

I can't count the number of people who have asked me "what do you think about Angelina Jolie?" Those people are not asking me what I think of her acting skills or her tattoos or her large brood of international children. They are asking me what I think about her discussing her decision to have a double mastectomy because she is BRCA+. My first thought is this: What does that have to do with me? She's BRCA+. I am not. I had breast cancer. She did not. It's strange how people think that if a celebrity deals with something cancer-related, you must just UNDERSTAND each other. On the other hand, moments like these are valuable because they open up a conversation that is much wider than any I or any of the normal run of the mill average Jane cancer survivors could elicit. So here's my two cents on what I think about Angelina Jolie, and then here's my 50 cents about what I think about a lot of other things:

Good for her. Angelina Jolie could be awesome or annoying--I have no idea, and neither do you. But one thing is true: She knows how to use her celebrity to get the word out about things. Her situation is one in which loved ones died from cancer, and she found out she was susceptible as well. She made a decision that she sounds very happy with, and her family is happy with it, and she told people about it in an editorial that is quite well-written. She speaks some useful truths: acknowledging that her risk of breast cancer does not go down to zero due to the procedure, highlighting that only a small fraction of women with breast cancer carry the BRCA mutation, discussing the high cost of genetic testing and giving a shout out to lower-income women who don't have access to it, putting in writing the shocking number of 458,000 people who die from breast cancer each year, saying that most women with BRCA have a 65% chance of developing breast cancer (Jolie has been criticized for saying that she reduced her risk of cancer from 87% to 5%--because 87% is too high a number for BRCA+ women. However, if you actually read the editorial, you will note that she gives the correct percentage for BRCA and then says that her doctors gave the 87% number TO HER SPECIFICALLY). She has been criticized for talking about the minimal scarring, the beautiful results and the quick recovery time. But if she had minimal scarring, beautiful results and a quick recovery time, who are we to judge?

Good for her.

It is not Angelina Jolie's fault that the media, women, breast cancer advocates and everyone else under the sun will use her situation to spread false information about cancer, about breasts, about mastectomies. She told her truth and is using her fame to help other people who might find themselves in her situation. If Angelina Jolie undergoes an ooverectomy and volunteers herself for surgically-induced menopause, and then goes out there talking about how difficult it is to deal with the changes of menopause for young (and all) women, she will reach that Goddess-like state of awesomeness for me. And if she doesn't do the surgery or doesn't talk about it if she does, it is none of my damn business. I am also left to wonder why there were so many articles that asked Lance Armstrong about his testicular cancer, without any of them even mentioning his testicles or lack thereof in the case of the one.

So that's my two cents. Here's my 50 cents.

If you put 1,000 women in a room, 120 of them, give or take, will develop breast cancer in their lifetime. Six of the 120 will be BRCA positive. Those 6 women are important. The discovery of the BRCA mutation is one of the most exciting cancer-fighting developments that exists, because it offers a chance for prevention for some women, but also for this reason: Knowing you are BRCA+ IF YOU HAVE BEEN DIAGNOSED WITH BREAST CANCER ALREADY helps doctors manage your treatment plan. It is also important because it is one small window into the role of genetics and DNA sequencing in cancer. It explains only a tiny fraction of breast cancers, but that is better than nothing.

Many of us have nothing. I am one of the 114. More specifically, I am one of the 18 women in the room with triple negative breast cancer, an elusive and mysterious beast.

We have nothing to go on--we know about a slew of risk factors, many of which didn't present in our lives, many of which do not even apply to our non-estrogen-receptive type of breast cancer. If you are a thin 34-year old non-drinker who exercises like crazy and is busy nursing a baby all day, you don't think you will have breast cancer. And, yet--maybe, you find out that you do.

So, given that she knows that she is speaking about a specific situation that a minority of women might find themselves in, I appreciate Jolie's sentiments for what she does NOT say. She does not say that mastectomy was the right choice or the only one. She says it was the right choice for her. I know other women in the same situation who have made different choices. They were not WRONG.

This relates to one of my personal pet peeves about how we talk about breast cancer. There are so many in our society--including cancer survivors--who talk about certain surgeries or treatment options after a cancer diagnosis as if they are the only right decision. People say things like "I had cancer in one breast but I had a double mastectomy because I'm smart, because I'm educated, because I wanted to do all that I could." The implications there are that those who had single mastectomies or lumpectomies are dumb, uninformed, even lazy. The reality is that breast cancer is complicated. I was told, after a lot of teeth pulling on my part to get the docs to be straight with me, that mastectomy--single or double--would not increase my chance of survival or disease-free life AT ALL. Lumpectomy and radiation would offer the same benefits. I chose to do the latter for a variety of reasons, which I've outlined here before, and I think it is totally reasonable and understandable that other women make other choices. For me, I heard what was under the doctors' admissions of the lack of difference in my chances. My cancer subtype, triple negative, was MUCH more likely to metastasize to a distant area of the body than to recur in the breast. And cancer confined to the breast never killed a single person--not one. If my cancer recurred locally, but didn't spread, I would survive. Mastectomy would not lower the risk of cancer cells that had spread throughout the body. Only chemotherapy could do that, and there was no guarantee that that would work either. In 2010, they offered completely different chemotherapy for TNBC than they do today--but of course, I couldn't know that in 2010.

I have absolutely no idea if I made the "right" decisions, and neither do my doctors, and neither do you. No woman with breast cancer knows that. This disease can rear its ugly head when you least expect it, and that is a truth that millions of us have to live with every day, without knowing if the methods we used worked. We are doing the best we can with the information available to us at the time. As I said to more than one doctor who asked me what I wanted to do, for each one of the literally hundreds of decisions I had to make about my care and treatment plan: "I want to go home."

And that was the one choice that I just didn't have. So let me be the one to say that there is too much emphasis on our POWER over this thing--too much emphasis on what we can control, what is right, what is "heroic."

Let me say this: You are not more heroic or more informed or smarter if you are diagnosed with cancer and get a mastectomy, if you have to do chemotherapy, if you have a positive attitude, if you survive, or anything else. My husband said it this morning: "It's heroic to deal with breast cancer--period." This is not a competition, nor a game.

There are 120 scenarios present in the 120 women who find out they have breast cancer. Some might choose mastectomy in part to avoid radiation or chemo and then find out that they have to do it anyway because cancer has spread to the nodes. Some women undergo every aggressive treatment and surgery under the sun and their cancer metastasizes despite their best efforts. Some women do a lumpectomy and radiation only and live long lives without a recurrence. The problem right now is that we don't know who is who. BRCA provides a glimpse, and that is a great stride that has been made in cancer research. But currently, only 1-2% of breast cancer research dollars go toward understanding metastatic disease--which is the only type of breast cancer that has ever killed anyone. That is shameful.

My personal favorite breast cancer celebrity is Robin Roberts. I admire her not just because she is the first famous person I know of to talk at length about TNBC or because she looks so amazing bald. I admire her for her honesty in talking about the difficult things. She has said things like "There is no remission for my cancer," "I'm not out of the woods," "you have days that are so hard you don't think you can go on," and she has shown, to millions of people, the terrible potential effects of toxic chemotherapy as she fights a potentially fatal blood disease brought on by her treatment for breast cancer. Many women will never go through what she has gone through, but she has given a public face to those who already have.

If I were famous, I would talk about triple negative breast cancer, and the relatively high chance of metastasis. I would talk about being a nursing mother at diagnosis. I would talk about sexuality and menopause and my hatred of pink and of slogans like "groping wives means saving lives" and the seemingly ubiquitous feeling that we are, that I am, just breasts and hair and nothing more. I would talk about what is true for me. I am not famous, but that is what I have been doing in this forum for the last three years. I don't claim to represent anyone else. I have talked about this body, this disease, this experience, this woman.

The thing we should all remember about something like cancer is that behind every positive story of empowerment, behind every happy ending, there is so much suffering, fear and death. It is the least we can do for those who experience that reality. And there are many, many people who understand this--including some who are famous, and some who are not.

The other day at my gym, people were discussing the community walk that raises money for breast cancer treatment at a local hospital. A few women were talking about how big this walk has become--more than 12,000 people participated this year, and it started out as just a handful of women walking down the street. One woman remarked that this was inspiring, and amazing. The other woman, older than the rest of us, with a wizened look on her face that told me she probably knows a lot of things that the rest of us don't know, said this:

"Well there are so many because, Jesus. There are so many."

Day 747: What's In a Word? The "Skinny" on Breast Cancer

Recently, I saw that someone had commented on my blog about reaching the critical 2 year cancer-free mark, “that was really good. Why does she keep talking about being skinny?”

It’s a valid question. So I thought I’d explain.

Cancer is a disease that seems to scare the collective shit out of us all so badly that we are always looking for a way to explain why it exists, and then to say, see, that’s why I won’t ever have cancer. Breast cancer is even worse than other cancers in this regard. There’s the infamous “is it in your family?” question that people ask, since now everyone and her mother is “aware” of the BRCA gene, but no one seems clued in to the fact that only a tiny percentage of women with breast cancer of any age are actually BRCA positive. Besides that genetic factor, however, which is clearly not your fault, most of the other breast cancer risk factors we focus on have to do with things that are already sensitive subjects for women. Things like drinking, and diet, and exercise habits, and breast density.

Things like weight.

See, being overweight is one of the only known risk factors for breast cancer, along with a sedentary lifestyle (isn’t that a risk factor for most bad things?). I have to point out that almost all risk factors are determined for estrogen-positive breast cancer, and are studied primarily in post-menopausal women. Risk factors for triple negative breast cancer are mostly unknown, and researchers seem completely at a loss to explain risk factors in young women. But I digress.

Now, if one is overweight and becomes diagnosed with breast cancer, I’m not sure what one is supposed to do with that information. Hang her head in shame? Because, look, just about everyone in this country is overweight; we focus on this as a major public health issue all the time.

So most people are overweight. And yet, most people don’t get breast cancer.

And furthermore, only 5% of the 1 in 8 women who will have breast cancer in her lifetime are under age 40 at diagnosis. Only 2% are like me, and are diagnosed before age 35.

How many of us are overweight at diagnosis? Is weight even actually an issue for very young women with breast cancer? The answers aren’t clear.

And yet we have to constantly be told to watch what we eat, to try to be thin, to be active, or the presumption is that cancer will return and it will be our fault.

But what if we were already thin and active, and we got that shit anyway? It starts to get tiring.

I want people to get out of my size 26 pants and start thinking about how this focus actually makes breast cancer survivors FEEL.

It is a strange burden for someone like me, someone who has always been naturally small and then went through a period in her life, like many women, when I wasn’t small anymore. I gradually put on about 15 pounds over the 11 years I took birth control pills. When Gabe and I met, I was 27 years old, a healthy size 4, at 5’5” and about 125 pounds. Even then, I felt big to myself, having been tiny throughout my teens, graduating from high school at 5’4” and maybe 100 pounds.

Then, I got pregnant, gained about 40 pounds, and had one hell of a time losing that baby weight. I would nurse 8 times daily, work out 3 hours a day and eat small portions of healthy food and it didn’t make a difference. I never ovulated after Lenny’s birth, even though I was having regular periods starting about three months after I weaned her. I had my thyroid checked and it was borderline abnormal but not enough to warrant treatment. And I’m telling you, I just knew something wasn’t right. Well, now we know what it was—my hormones had blown up and I had the beginning glimmers of triple negative breast cancer. But of course, we didn’t know that then.

When I got pregnant with Augie, after taking clomid for one cycle, I weighed about 140 pounds and was a size 8. I felt enormous, though Gabe told me I looked amazing. The day before Augie was born I weighed 178 pounds—more than my husband. Then, I gave birth to that crazy kid, and everything changed.

Damn, did that little boy jumpstart my metabolism and bring me back to myself—my real self, the way I always was before medication and pregnancy. Within six months of his birth, I was down to what I had been when I got married. I just kept losing. I had a ton of energy and started having normal cycles when he was 3 months old even though I was exclusively nursing. When he was 11 months old and I was diagnosed with breast cancer, I weighed what I weigh now: 117 pounds. I was a size zero or a size two, as I am today.

I finally felt like myself again, and then this shit happened. And now every day I have to ask myself if I had breast cancer because it was hard for me to lose the baby weight, or because I gained weight from the pill. All the while, I know that it might be the other way around—cancer might have done a number on my hormones, making it hard to lose weight. Who knows? Wasn’t it bad enough to just have had those issues, without putting the guilt of cancer on top of it? And isn’t it bad enough that I was thin and healthy and feeling great, and then I found out I had cancer growing in my body for years, and now my thinness is considered some kind of requirement for making it to age 40 when other people have no such judgment on their frame? Isn’t it bad enough what breast cancer actually does to your body, and to your body image?

Isn’t cancer bad enough?

Here’s my gripe. We focus so much on women’s bodies and what they look like, how they are shaped, and it’s ridiculous.

I wish being small had saved me from having breast cancer. But it didn’t. I also don’t think that having extra post-baby weight for a few years gave me breast cancer. It just seems like people want to be able to look at you and know why something bad happened, and we focus on the size of breast cancer survivor’s bodies because we are collectively obsessed with focusing on women’s bodies in general.

I have heard so many ludicrous things about my body since this so-called journey began. Apparently, these 34bs are just an abomination of smallness in the breast lexicon, as mammography technicians, surgeons, nurses, and others remark about my “small breasts.” Before cancer, I never thought I had small breasts. Perky, yes, but you know, I thought they were nice. They seemed adequate. Boys and men seemed to like them pretty well. All of a sudden, they were problematic, annoying for mammograms, difficult for the purpose of lumpectomy, and full of that god-awful “dense breast tissue” that apparently is trying to kill us all.

I have heard that I didn’t burn badly from radiation because I don’t have body fat on my chest and therefore “there’s nothing too deep to burn—you know, it’s like deep-frying a turkey; the fat burns hottest.”

Wow, you really just said that to me.

I’ve been told that I won’t feel this injection or this 7 inch needle, but oh wait, yes you will, you’re thin, so it will hurt. I’ve been told I should get a port even though “it will look weird on you because it will stick up on your chestbones.”

Again, wow.

“Your arms are thin but muscly so therefore your veins really roll, and it might be hard to get this IV in.”

Did you just blame your professional incompetence on my goddamn VEINS?

“Surgery will be easy on you! You’re skinny! We love skinny patients!”

We don’t love you back.

“You would have never felt that tumor if you had weighed even 10 pounds more.”

Thanks for scaring the shit out of me as I eat this piece of pizza.

“Wow you are in great shape! Keep it up! That’s the best defense against cancer.”

Well, it didn’t help me before.

You get what I’m saying. One of the most infuriating things about being a woman going through a difficult medical issue is how you are suddenly just DEFICIENT. Everything about me was suddenly wrong: my breasts, my veins, my everything. They gave me a chemo dose based on a 126 pound woman when I was lucky to weigh 113 going into treatment each time. It’s like they wished I was someone else, because then life would be easier for them. Do you think men have to listen to this shit? I’m sure men with testicular cancer are not subjected to tirades about their misshapen balls, chastised for having beer bellies or for having chicken legs, or told that their ventricular structure is just WRONG.

Here’s what I really want to get at—can we just stop? Stop talking to women about their body types all the time? I’ve been hearing this since I was a little girl: oh you’re skinny. Well, sue me. Now don’t I sound like a bitch saying that?

Yes, apparently I do. According to a recent article in Glamour magazine, women (more than men) are judged based on their body type for different personality traits by strangers. Heavier women are more likely to be considered lazy, on the one hand, and nice on the other. Thin women are seen as competitive and driven and also…bitchy.

I’ve heard that one before. Friends joke that they call me that skinny bitch. Girls in high school would say, hey you’re skinny…I hate you. People are always surprised when I am laid back. I work out a lot and people assume that’s because I’m vain, rather than that I’m just a hopeless insomniac or because I don’t want to die from recurrent breast cancer. Think about it. You look at someone and think it’s ok to call her a bitch, or say that you hate her? I know they are figures of speech, joking expressions. That doesn’t mean it doesn’t bother me.

So, I talk about being skinny, even though I’m not actually skinny, because people talk at me about it all the time. Gabe said to me a few weeks ago, I just don’t get it. You’re not skinny. You have a soft belly and strong legs and arms and that bodacious booty! Why do people say that to you?

The sad thing was, his comment kind of hurt my feelings. And that fact highlights that there’s 36 years of reasons for me talking about this now.

When I was a tiny little kid, I found out I had epilepsy. The medication was really toxic and did a number on me. Eventually it made me gain weight, at the same time that it made me never want to eat. My parents worried that I had an eating disorder. In third grade, when I was no longer tiny but also not big at all, a boy asked me if I was pregnant. I was eight. And I still remember that.

When I was hit by a car in 4th grade, I was weighed in the emergency room as they medicated me and contemplated surgery that never took place. I secretly hoped to weigh 50 pounds because I thought that would be a nice round number. I was disappointed to only weigh 45. Upon telling this story years later, laughing at the fact that I was able to distract myself from my own potential death or paralysis by focusing on the scale, a friend told me “Damn Katy. There are healthy three year olds who weigh 45 pounds.”

In 9th grade, my English teacher berated me for my size all the time. Now, she was a heavy woman, and kids made fun of her for that, which was terrible. But I wasn’t like that—I never would have made fun of someone for being big—my mother raised me right. I didn’t like her much, because her class was boring and she was mean to me, but I never said a negative word to her or about her and I continued to get straight As. But really, who was this teacher to ask me if I was anorexic? To tell me I shouldn’t wear shorts because my legs were so skinny? To ask me if I ever ate? Me, that 14 year old who ate like a horse and was just getting used to the idea that girls did this thing called “dieting,” since no one did that in the neighborhood where I grew up, where I often heard such backhanded compliments as “well, you’re fine for a skinny white girl,” or “at least you’ve got a nice booty.”

For a. At least. What bullshit. What man has to listen to this crap? You can be as skinny as Mick Jagger, as big as Tony Soprano or as ripped as 50 Cent, and some women will still be throwing their panties at you trying to get next to you. Guys just work what they’ve got, buy clothes based on their actual body measurements, and focus on other things. And we let them. As a society, we give them permission to be themselves.

I mean, Gabe will talk about how he wishes he could get huge guns like some guys, he will glance a little wistfully at his own muscular arm, and then he will shrug and move on with his life. When we moms were relaxing on mother’s day after the breast cancer walk, we were talking at one point about legs, because I was hot and I needed to put some shorts on and other moms don’t like their legs and therefore don’t wear shorts. The guys were all at the park talking about the Avengers or something, and one of them kept stripping down out of the multiple layers of clothes he was wearing. I’m doubtful that the shape of legs, the relative hairiness thereof, or anything else related to any one of their bodies was on the agenda that day at the park.

We do this, because we are taught at very young ages to do this. I can’t stand having to listen to people comment on my daughter’s size. Yes, goddamn it, she’s little. So freaking what. SHE IS SIX YEARS OLD. Why are you looking at her body? “oh, she’s so tiny!” “She’s such a peanut!” “Do you feed her? “ (Yes, idiots have asked me if I fucking feed my daughter). “She’s so petite! The boys must love her!” What? Are you sick?

Not off the mark, though. Little boys have said they like Lenny because she’s cute and little. Dads have remarked about how thin she is, and said that it’s good she got my body type and not Gabe’s. Thanks for making me know that you have checked out both me AND my little kid.

We had to switch pediatricians because of Lenny’s small stature. He kept telling us she wasn’t big enough, she wasn’t heavy enough, and that we should feed her butter and whipped cream to fatten her up. Seriously—that was his medical advice. He made me feel like a bad mother. And other people made me feel that way too, as they glanced askance at my small baby and talked about how proud they were of their kid who was 90th percentile. What was that about? Were these moms implying that their baby could kick my baby’s ass? What is WRONG with people? Anyway, finally we changed doctors and he, being a very slight man himself, never seemed to take much notice. She sleeps all night? Is active? Smart? She’s fine. At one point he was worried because she only showed up as 2nd percentile on the weight scale.

“Look Doc, I’m second percentile too. Someone has to be second, or they wouldn’t be percentiles, would they?” He laughed at that, and then helped me stop Augie from escaping the room in a mad flash.

And I thought to myself, second percentile. Yes, that’s true. And she can do cartwheels on the balance beam. She can do multiple pull-ups in a row. She can hang on a bar in the park forever, holding up her 34 pounds with those impressive little biceps. She’s not lacking in the brains department either. Hell, she’s arguably smarter than me. And her doctor. And lots of other people.

And she is so awesome, just the way she is. Today I told her that we were going to take pictures for the blog, because I was writing about how people always comment on who is big or small and it shouldn’t make a difference but I wanted to show that I was proud of her the way she is. She held up her hands and said “You should just like how you are. Right? You can’t change.” While Gabe was tearing up at this pronouncement , I said, more importantly, though, there’s no reason to—you’re fine just how you are.

And of course, she is fine, but her size has its advantages and its disadvantages. It will be both easy and difficult to find clothes that fit. She will be noticed, for better or worse. She will be aware of herself when she shouldn’t have to be, because she will remember how everyone talked about her being little from the time she was born. For every nice, reasonable respectful boy who is attracted to her in part because of her petite size, there will be another who preys on her for the same reason.

I should know. Especially in high school, I knew that my petite frame was one aspect of my general attractiveness to boys. It also made me a target, as boys who liked to wield their comparative large size and strength over others chose me as easy pickins. This fact made me hyper aware of my surroundings at all times, and, I’ll admit, it made me mean. I learned how to fight. I got good at it, even as I knew I could never win these fights based on strength or size alone. One time, when I was a senior, I went to an informal dance at my high school. A boy who had preyed on me before picked me up, trapping my arms at my side over my head, like I was a rag doll. He was high on something, and he told me he was taking me into the boys’ bathroom. He must have remembered that other time he picked me up and started to molest me, when I punched him in the face and head with my hands until he let me go, more out of shock than pain. There was no way I could fight him with the way he was holding me. He was a football player, so much bigger and stronger than me. He told me there was nothing I could do about it. I looked around and realized that even though there were thousands of kids there, no one was going to help me. My friends couldn’t see me, other people weren’t paying attention, and his friends were in on the whole thing, I’m sure. I thought I was beat. I was terrified. Then I realized something. I was sober, and I was smarter than him. I had to have some kind of advantage. What was it? Oh…

So I straightened my arms into a diving pose, sucked in my breath, made myself smaller and narrower than I thought was possible, and slipped right out of his grasp. I landed on my hands and feet, and I ran.

I told someone this story years ago and she said, I guess the moral of the story is that it’s good to be strong, so girls should work on that, but it’s also just good to have your wits about you.

I said, the moral of the story is that boys and men shouldn’t be sexual predators. My size and strength have jack shit to do with anything.

So let’s just stop. Stop talking about who is skinny fat, whatever that is, who is strong, who is curvy, who is tall or short, who is lopsided.

Someone once asked, ain’t I a woman? And I say, yes, you are. If you have two x chromosomes, you are a woman, so stop trying so goddamn hard to prove it. Apple, pear, or hourglass shaped? Still a woman. 2nd percentile or 98th? Still a woman. Big floppy breasts, small perky breasts, mastectomy scars? Still a woman. Long flowing hair, short pixie cut, bald as the day you were born? Still a woman. Long legs? Stumpy legs? Big muscles? Pencil arms? Curves all over the place? No curves at all? Gay? Straight? Kids? No kids?

Still a woman.

Is your body functioning correctly? Than claim it, own it. Not everyone is so lucky.

I have lost the healthy function of almost every single part of my body at some point: my legs, my brain, my heart, my left arm, my lungs, my liver, my sweat glands, my pectoral muscle, my immune system, my goddamn cellular structure. I have lost my hair. I have had chunks of my breast removed, leaving it indented on one side. I have gone through menopause. I have gained weight from medication and gotten so skinny from chemo that I could hardly walk. I have scars and tattoos. And I’ve been the same me the whole time—still small, still pissed off about a lot of things, still verbose, still sarcastic.

Still a woman. A woman who had breast cancer, and had to hear about her body, her hair, and her face all the time when she was worried about her life. That's the skinny, folks.

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.

Day 218: It's All Over but the Shoutin'

This day has finally come, and it feels so anti-climatic in a way. For months when someone asked Gabe how he was doing, he would say, ask me in mid-December, or ask me in January. And now here we are, December 10. Shouldn’t there be fireworks? When you see me walking down the street, shouldn’t I have that glow like pregnant women do? Shouldn’t I get something, some kind of a prize? I guess not, since there’s no guarantee I won’t be doing all of this again at some point. And all of this was a hell of a lot, and I realize now I was so anxious to get it done that I didn’t give myself any breaks. I found something strange in my breast and went to the doctor the next morning. He told me he was 99% sure it was nothing but gave me an ultrasound order just in case, and told me I could wait to have it done. Six days later I went in for the ultrasound that ultimately turned into a core biopsy and a cancer diagnosis the next day. A month after diagnosis—the earliest date possible—I had surgery; 19 days later I had surgery again; 2 weeks after that I started chemo and 8 days after chemo ended I started radiation. No rest for the weary, right? I wouldn't change a thing though, as I ended just in time--it's been cold and snowy here already, and we are set for single digit high temperatures next week after a big storm this weekend. I'm so glad I won't have to go out every morning to burn myself in that weather.

I actually did get something today—the ladies who did my radiation cheered for me and blew bubbles, as they always do when someone “graduates.” I really liked the people who did my radiation, and it’s a little strange that I won’t be seeing them every day anymore. It’s like some kind of Stockholm syndrome, but the captors were actually nice people. I had the same main tech for the first 28 treatments, and the assistant was one of three different women. This last week for the boost I was in a different, colder, more sterile room (the “dungeon,” they call it) with different techs. While they were still very nice, it wasn’t the same as the women who complimented me almost every single day on my clothes or my shoes and told me stories about their kids every day for six weeks. As if I was a normal person, a woman, not a cancer patient. My main tech gave me a big hug as I left. It must be a strange job.

It’s just so hard to believe that I’m done with cancer treatment. No drugs, nothing left for me to do but wait and get mammograms all the time and wonder if every strange pain is stage IV cancer. Bubbles or no, no matter what anyone says, life doesn’t change all that much. I will still make dinner and do laundry tonight, and there will be no huge life or career changes, no trip around the world, no new love affair, not even a drumroll. But wait, what did I write a minute ago…I’m done with cancer treatment! You hear that? Done! Take that!

Maybe instead of fireworks I could be my nerdy self and do some math, take stock of the situation. I can do that in conjunction with using my least-favorite cancer metaphor of the “war” or “fight” on cancer. Back on May 4th, three small, aggressive, rare-type tumors hiding insidiously inside my lactating breast were taken on by the following:

1 core needle biopsy
3 regular breast ultrasounds
1 3D breast ultrasound
14 blood tests (at least)
1 chest X-ray
6 mammograms
1 sentinel node mapping
2 wire placements in the breast
2 surgeries (three if you count the sentinel node biopsy) under general anesthesia
8 rounds of chemotherapy via IV
6 Neulasta shots
2 Neupogen shots
2 visits to the sleep clinic
3 CT scans
5 EKGs
2 trips to the emergency room
1 48-hour hospital stay
1 echocardiogram
3 tattoos
33 rounds of radiation
19 acupuncture treatments
58 blog entries

And too many side effects, manual breast exams and over the counter and prescription drugs to mention.

I wish they had let me keep the tumors so that I could laugh at the disparity of all that needed to be done to combat some lumps that when put together were the size of maybe two pieces of popped corn.

Who won? Well, it’s hard to say. Over the last seven months I have lost the following, to varying degrees of severity, duration and permanence.

My:
hair, mucous, sweat glands, ovarian function, fertility, menstrual cycles, sex drive, chunk of the left breast, 5 lymph nodes, a bunch of nerve endings, ability to eat, ability to sleep, nice peach color on the left side of my chest, unmarked body (damn tattoos), use of one of the veins in my hand, ability to nurse my infant son, ability to have sex without lube, youth, potentially my identity-forming hair color (is it red? Is it brown? It had BETTER be red), a few of my friends and some of my self esteem.

I have kept a lot of things as well. I have always been able to think and remember, as I never had chemo brain. Therefore, I could write this blog. Radiation hasn’t affected me in any severe way and I believe the burns will be quite temporary. I maintained my complexion, skin color (except the parts that were radiated), original body weight and overall figure. I didn’t develop neuropathy. I never looked particularly un-healthy and my energy level has remained amazingly high, if I do say so myself. I had those times in the brutal months of chemo when I felt like I was sub-human, and yet I walked almost every day for an hour. I kept most of my friends and even found that people I didn’t know that well wanted to do something to help me.

I had a ton of support, but a lot of loneliness too. A lot of living inside this still-working brain.

I kept my sense of self, and my roles in life, for the most part, though everything seemed different. I worked full-time for 5 of the 7 months of my continuous treatment, though I did telecommute at times. Seriously, when I look at the list above, I wonder how I had time to do anything but cancer. How does anyone? And yet everyone does their normal things, for the most part. I was still mom, the no-nonsense one, the one who doesn’t take shit, but I was sick mom, bald mom, somewhat scary mom, at the same time. I was still married to someone who was crazy about me, but there was distance there at times, especially during chemo when he was terrified he would get me sick if he was too close to me, and I would die. When I wasn’t in the midst of the worst parts of chemo, I cooked and cleaned, and all along I hung out with people and made jokes and tried to walk around bald like it was no big thing. I kept my sense of laziness and lack of interest in what people thought right until the bitter end. I remained the pissed off somewhat cranky person who doesn’t like to be told what to do that I have always been. I was still a daughter, sister, friend, neighbor, still a stranger. I was still me, so it seems.

And yet …and yet. Things just changed. Some things will never be the same. I’ll have this fear of recurrence, and this responsibility, to check out everything that happens to me, for the rest of my life. I’ll have the knowledge that the “rest” might not be that long. But ultimately, I think if I could choose one thing that I wish I had never lost, it would either be my old sexuality or the ability to sleep. Isn’t that funny? Not the breast, or the hair, the eyebrows (those are coming back! Along with the lashes. I’m on my way to looking halfway normal someday). Those things seem less important. You can say it’s frivolous, but I wish sex was as easy and awesome for me as it always was, because now I know what it is like for many women, and now I know how special it was, that thing that I had, and it was mine damnit, not Gabe’s or anyone else’s, and while I haven’t entirely lost it and I still function normally under the general definition, I still wish I had it back. I also have not had a decent night’s sleep since April, for various reasons. I still have hot flashes all the time (I had one during radiation this morning), and the other night I had five an hour again, and was so desperate for them to stop that I lay in bed crying. It’s possible that menopause will reverse for me and these things will come back, especially the sexuality part, but the sleep probably never will. Just as no mother ever sleeps so lightly again after her children are born, just as I have never slept soundly since breaking my hips meant lying on my side for more than a few hours would be painful, cancer makes your mind race in ways that makes sleeping soundly a challenge.

There have been things that happened that were too painful to write about in the blog at the time that they happened, though now I see them more as chronicles of what chemo does to a person than something personal that happened to me. Two things come to mind:

The first time we had sex after chemo, at my insistence since I wanted us to be normal, I vomited afterwards. It was just too much for my body to handle. I still had a high sex drive then, and the experience itself was normal too. I just felt so sick afterwards, I could barely stand. Now, I know how it touched people to read about Gabe shaving my head. At that point, we had already had some memorable times of warped emotional intimacy, as evidenced by him standing naked in the bathroom talking to me while I puked after we made love. Talk about fucked up.

Another time, I took off what I thought was a piece of food from one of my teeth while I was brushing. It was actually a big piece of my gum. I had to go to an emergency dentist visit for that one. It turned out to be fine, and the gum eventually regenerated, but I was so disgusted, I almost quit chemo right then. At those two moments, I really did feel at war with myself, that my body was rejecting itself, and that is a feeling that is almost impossible to explain to someone who hasn’t been there. I had been there before—why can’t I walk? Why did they have to call in counselors to explain to other kids about me writhing around in convulsions on the floor?—but when I was younger and I didn’t yet know that it was possible for your mind to just not accept what was happening to you.

I have accepted all this, as everyone does. Look, it’s not about strength or moxie or bravery or resilience or anything else. You aren’t given a choice so you do what you have to do—just about everyone in this situation does. But as an adult, you have this nagging sense in your mind that doesn’t accept things. When I was a kid, I just took everything in stride. I didn’t know enough of the world to know different. I looked at today, and that was it. It’s hard to do that when you’re grown, especially when so much of your sense of your own future is wrapped up in your children’s future. What do I need to do to remain as highly functional as possible? To be a good role model of a responsible parent for both my kids, to show my daughter, and hell my son too, what it REALLY means to be a woman, in spite of what society says? To take away from Gabe the difficulty of thinking about how a motherless family would look, and go through what I need to go through to make sure the kids would have what they needed if I wasn’t around? How can I be realistic without being morbid? How can I give others permission to not behave the way everyone thinks you should behave when some bullshit happens?

I look through all this and I realize why the battle metaphor is so stupid, besides the misplaced machismo wrapped up in it. Battles end. I am done with treatment—for now—and I wonder what the hell I will do with myself, but cancer is just a part of me now, and always will be, even when 2010 has come and gone. I plan to make myself write this blog at least once a week, even if no one reads it now that I’m done with the technical treatment. I still have a lot of things to say about cancer, about illness, about gender, and some of these things are things I have always wanted to say but never did because I was too busy to sit down and write about them, or because I thought no one would give a shit.

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

Thanks for reading.

Day 191

It's been almost 200 days; I guess it's fair to say I'm still plugging along. I've finished 14 radiation treatments, and my skin looks no different than before, at least not to me. I know it's early, but the nurses seem to think it won't be too bad for me if I keep following the instructions. All that means is that I need to slather myself with aquaphor two or three times a day, all over the left side of my chest. This is obviously not a difficult thing to do, but let me tell you, I have already ruined a lot of clothes. That stuff is a nightmare of goopiness, and it doesn't come off in the wash. On the other hand, I didn't even have to buy any at the store--we have several containers at home, since that's what we've always used for the kids' diaper rashes.

I can't decide if cancer treatment is meant to infantilize you or make you feel old. Right now, it's a strange mixture of both for me. Diaper cream, baby chick head, loss of most of my other hair. Menopause, exhaustion. Some people treat me like I'm a fragile little thing, others like I'm two steps from death's door. Luckily, I've found that many people are capable of treating me normally, even if it becomes obvious that it takes some effort for them to do so.

I've been trying to go out in the world a bit more, since I spend so much time by myself at home. I thought I would be bored at home, since the only time I've ever had off of work since the age of 12 or so was during my two maternity leaves. It's impossible to be bored with a newborn in my opinion, especially when you're nursing. You turn around and the day is over, and you haven't even changed out of your pjs. Since I'm still sending the kids to daycare most days, I thought I would have all this time. What the hell happened? I cook all the time now, do laundry, run errands, and generally act more like a regular housewife than a cancer patient. I have been prioritizing some me stuff--I've started doing a pilates class once a week and will be doing personal pilates training with a friend once a week as well. I lift weights at home, and I still take my walks--we've had an extraordinary fall here, 70 degrees this week, and I've made sure to spend some time outside. These pictures are from Thursday, when we went to Lincoln Park zoo on a ridiculously gorgeous Veteran's day.

But where do the days go? They've been much more efficient at radiation, so I don't even have time to read the paper there. In fact, I figured out that the woman before me is always late, so I get there extra early, before her, and they take me back right away. She sees me on the way out sometimes and asks me incredulously if I'm already finished. How is it possible to be late to something every single day? I don't get it. This cancer treatment, it's your job. You have control over nothing so you might as well show up and get it done.

So I've been reading cookbooks for the most part and I've been fattening up a bit as a result. Gabe is probably happy about this, but not me. I'm a little obsessed with staying in the best shape that I can, since I'm convinced that I would be much closer to death's door if I'd weighed a little more and never found that cancer. But it's still hard to resist my own brownies, or my breaded tilapia or homemade meatballs or any of the other things I didn't have the energy to make or the desire to eat for so many months. Since I have failed to do so personally--and I will, I promise--I did want to take this opportunity to sincerely thank everyone who cooked for us during my four months of chemo. That was such a huge help, especially during the three months when I was working. I don't really know the best way to thank people, since I hope I will never have to pay anyone back in the same way. So until I figure out something better, just know that we greatly appreciated your generosity. Gabe still gets choked up every time we talk about it.

In addition to eating and exercising, I've been taking advantage of this spa Wednesday that the local hospital offers to cancer patients. It's called Faye's Light, and is funded by a special grant. It's really a cool program. I have received a few free massages, a free manicure, and I tried reiki for the first time for free. That wasn't for me, but the massages have been great. I have a few pedicures scheduled as well as a few more manicures and massages. Apparently the woman who started this foundation remembered how much her mother appreciated her doing her nails when she was in cancer treatment. Most of the time, when you have cancer, you are experiencing what we tell our kids is "bad touch." People poking and prodding you, sticking needles in you, poisoning you. What's especially sad is that for a lot of people, that's the only touch they get. I see some of these people at radiation. They are old, and they chat up the nurses because I think they have no one else to talk to, no other human contact. At the spa, I've never seen a man waiting for a treatment. I think that's really too bad--free massage is good for everyone, especially people who have gone through all the crap we have!

So I can add that to the list of things to be grateful for, even though I don't feel any pressure to develop such a list. I have had a lot of affection and love for someone going through cancer. Unfortunately, a cancer diagnosis can take that from you. But I am in a loving marriage and my kids still like me, even though Augie is often more likely to whack me than hug me, because he is just crazy. And I have recovered fairly well from chemo, except for these hot flashes which are driving me to distraction. I need to find something that works on them--acupuncture does nothing, and there's not a whole hell of a lot I can take. It is a really miserable situation and yet--it's the only thing I can see as lasting from chemo, outside of my strange looking hair. And don't get me wrong, it's a big thing, this killing of my ovaries. They didn't deserve to die, you know? What the hell did they do to anyone? But if I didn't have terrible hot flashes, I think I could deal with menopause, though it does make me sad.

I don't get sad that often, but sometimes things hit me. Yesterday I was thinking about this couple whose wedding we attended years ago. They came to our wedding as well; we were friends, and I worked with the woman. She had a teenage daughter who was her whole world. Now she is gone, and so is her husband. He was young and healthy and died relatively quickly from stomach cancer. She died very unexpectedly a short time later, of natural causes, though I think she was maybe 37 at the time and there was nothing obviously wrong with her at all. I think her daughter is in college now, and I know she would be so proud. I was crying quite a bit thinking about this yesterday. Crying to think that neither of them is here anymore, crying because her daughter had so much loss, crying to think about how much has changed in just six short years, for how much in life is unforeseen, but also crying for selfish reasons, because I know she would have wanted to see her daughter graduate high school and I really want that too. Crying also because it made me angry to think about all the folks who talk about being positive, having faith, fighting. They both had all of that. Cancer just took him so quickly, and made him suffer so much; it also was so so hard on her. No young person could ever see that coming.

I wonder sometimes if that's what's in store for me, that suffering and death, but I also wonder what kind of justice it is if it's not. What makes me different? Why do some people get lucky? There's just no good answer. I hope that when this treatment is over, it's really over. I hope I can be like Gabe one day and say that I "had cancer." But these next three years will be harrowing. It's not until then that I can stop holding my breath, being a triple negative, with a high chance of recurrence or God forbid metastisis in those years. Can I just speed up time and get to that magical three year point? If I could, I guess I wouldn't, because I would miss out on a lot with my kids.

The other day I met another cancer survivor, right after pilates class. She asked me if I was going through cancer treatment. It's so interesting that only other people who have gone through it will just straight up ask you when they see the evidence on your head. We got into a long conversation. She was diagnosed at 40, 6 years ago, so I told her she should be good. Triple negative, BRCA positive, double mastectomy and ovaries removed. At one point she said, I have had everything taken from me that made me who I thought I was, and now I feel like I really know who I am. She said that at the same time, cancer has made her insecure, and she hates that, though it's good to be here to admit to it. I wondered if insecure is the right word. You can't be too insecure if you're out in public talking about your breast implants and how you think they look fake. You can't be too insecure if you point to another bald woman's head and say, yeah, I only wore my wig once. You aren't too insecure if you give this total stranger your number and tell her to call you. Haunted, maybe, still waiting for the other shoe to drop, but not insecure.

So I think I will call her. This is the second time in my adult life that a woman, a total stranger, has given me her number. The other time was years ago on the El, when a woman I talked to on the morning commute gave me her number and told me to call her if I ever wanted to go shopping or go to lunch. Maybe six years later, when I was pregnant with Lenny, I stood up in that woman's wedding. Having cancer makes me wonder why this doesn't happen more often. Why do we have so many walls up, especially we women? What is there to lose? It's as if we only learned how to reach out to strangers if they are good looking men. And then we learn that doesn't work out too well, so we don't do it at all. I think this is going to be my new year's resolution. All those friendly people in the gym at work, at water aerobics, on the train? You'd better watch out. You might be hearing from me. In the meantime, if you already have my number, feel free to give me a call. I'm in more of a talking mood these days. To some extent, cancer encourages you to focus on what is really important and let the rest go, though it is hard to do that on a day to day basis. On that note, nice work, Northwestern!

Day 21

Wow, thanks everyone for all of the well wishes that I've received here, on facebook, via email, the phone, etc. I am extremely relieved about the BRCA result, and I understand why they say the waiting is the hardest part. At least now I have the first phase of a plan, and I don't have to wait extra time to schedule a more complicated surgery. The surgeon yesterday told me that my tumors (we're going with two these days) feel the same size to her and that it's probably the biopsy that is making them hurt and the weaning that has made them seem obvious. So, no bad news to report there.

Except the cancer part. That's still there.

I know breast cancer can be one of the most curable cancers, but it's the "invasive" in invasive ductal carcinoma that is keeping me up every night. I thought I would sleep better last night, but I'm averaging about 2-3 hours I'd say, mostly on the couch. My couch has always been good to me for sleep. I'm not afraid of surgery, but I am very nervous about waiting until at least June 10 to know if this thing has spread. And it's chemo that's really making my already busy mind go into overdrive. People say not to think about it or to worry about things you can't control, but that is quite honestly just completely impossible.

I had a dream the other night that I was cooking Thanksgiving dinner. My dreams are very real these days--no weird dream-like aspects at all. OK, my dreams have always been like that and sometimes I wonder if I am just such a literal person that my subconscious state is like other people's conscious state. But that's a question for another day. In my Thanksgiving dream, I was in my own kitchen, cooking the dishes I always cook for Thanksgiving, and my kids were my kids at their normal ages and it was even cold and gray outside. But then I woke up with a start. No, this has to be a dream, I thought. This isn't real. This Thanksgiving, I'll be bald. And I probably won't be able to cook. And then I couldn't get back to sleep.

I'm sure this bald issue is getting old, but I think I would be able to deal with it easier if other people could do it for me. A number of people have literally grieved when I told them I would lose my hair. How do I deal with that? I remember in high school that I had a desire to be invisible, because I had that long curly red hair and people would come up to me and ask me about it, touch it even. Men, old ladies, everyone. I ditched class once when we had a sub and was the only kid who got caught. The teacher said, "do you think I would forget you?" And yet, I never would have cut it. I liked it as much as anyone else. But I have never been so conscious of it as I am now. Every compliment I receive is like a stab in the back. And that's not because I don't know how to take a compliment, but because that is what people ALWAYS mention--I can't remember the last time that someone other than Gabe spontaneously complimented me about anything else. In college we had an orientation exercise wherein we had to say something nice about each person in this group of people we had just met. Every single person complimented my hair, except for one guy who told me I had good posture. I don't remember a single other person who was in that orientation exercise, but I still remember that guy's name and can picture him perfectly in my mind. All because he didn't mention my hair.

I don't think it's vanity--it's just this ingrained sense that my hair is what people see about me, and when I lose it they won't see me at all. Or worse, they'll see me as a cancer patient. I mean, yesterday the breast surgeon's nurse looked at me and said "I'm sorry but you have the most beautiful hair." Seriously? And what do you mean, you're sorry? You know I'm going to do chemo and that I'm going to lose it. That was the time for a different type of compliment, like "great shoes" or something else I can control. I was taught that you shouldn't give compliments based on people's personal appearance, because that's just DNA and they can't do anything about it. Style, that's a different story. Now with this whole tirade, don't think I'm fishing for compliments--I would just rather be invisible right now, and this is my blog so I'm complaining about it.

When I responded to the nurse "I know, and now I'm going to lose it," she gave me the obligatory "but it will grow back" and then she started on this long tale of how different women are, how it's harder for some women to lose their hair than their breasts, how 80 year olds who should avoid radiation get lumpectomies anyway and young women opt for double mastectomies when they aren't medically necessary. She said, we're all so different, and everyone needs different things. Now don't get me wrong. I actually really like this lady. She has answered all of my questions and called me back when I've called about strange things and she is very nice. But I was thinking, does it matter that we are different? These doctors seem to want to know what I want. A lumpectomy? Mastectomy? Um, I want to go back to May 2, when I didn't know I had something foreign in my body that could kill me. The rest of these choices aren't really doing it for me.

I hope that by the time Lenny is an adult, they have something resembling actual recommendations for women with breast cancer, based on age, stage, size of tumor, etc. Recommend something to me and I can decide what to do. Now, that is mostly what has happened for me, and I am grateful for the excellent care I have and will receive at Northwestern. I was told I was a good candidate for a lumpectomy and that I don't need a mastectomy. I was told that I have to do chemo and that if I do a lumpectomy I will need radiation. I was told that anti-cancer drugs won't work for me. Of course, I could refuse to do any of these things, but that doesn't seem like the best plan for a young mom with a bunch of blog followers. But with other medical issues I've had--with the exception of pregnancy--these "choices" weren't on the table. Diseased gallbladder? Remove it. Epilepsy? Take medication for it and avoid activities that might induce seizures. Pelvis broken in multiple places with massive internal injuries? Lie in bed until you can move again. None of these directives changed the fact that this thing was happening, but at least the removal of choice from the equation made me feel like something had happened to me and I needed to deal with it, rather than that my choices would dictate the result. My choice would have been working guts, normal electrical impulses in the brain, walking on my own.

I know that's the opposite of what makes most people feel better--control is supposed to help. For me, that has always meant control over my environment, not control over the actual medical decision. I will cut my hair before chemo does it for me. I will try to continue to work and exercise and have sex and take care of my kids and watch stupid action movies. But I have felt overwhelmed in part because of all of the things I need to decide. Pregnancy was like that for me the first time. Genetic testing? Amnio? Diet, exercise plan, breastfeeding decisions. If you go online when you're pregnant you are asking for a lot of disturbing advice and stories that you compare to your experience. The second time, though, I just ignored most of it. I really wanted to have a second kid, and I didn't want to waste what I knew even then was probably my last time being pregnant worrying about shit. With this cancer, it's hard for me not to ask other women about their experiences, but it's also hard to digest that information when I know that none of it might apply to me. Maybe in a few years I will be ready to intellectualize some of this breast cancer experience, but right now I just need to know what's going on with me, lest I get too wrapped up in the overwhelming aspect of things.

In all honesty I have also felt overwhelmed because in my weaker moments I feel like I have given enough with this body, that I've made enough sacrifices and learned enough lessons. I know many people have it worse, but when I allow myself to think about the next year, and the years of fear after that, it makes me so tired. I am feeling less tired now that I know a little more about what I'm facing and I've even started to think I might be around in 20 years to read back on this blog with some measure of embarrassment. On that note, if my hair ever gets long enough again, I promise Gabe to wear pigtails more often. It doesn't seem so embarrassing now.

BRCA Results--good!

Short blog to say I'm negative for both tests! I don't even think I could have imagined my own relief. For those who have offered to help--beware. This means that next Friday, June 4, I will have a lumpectomy. I'm still seeing the surgeon today to see if these tumors are as gigantic as they seem to me, but this test result is the best piece of news I have received so far--I get to keep my breasts and my ovaries, Lenny doesn't have to be tested, and I don't have to worry (more than the general population) about a variety of other cancers that are common for BRCA-positive people. What a weight off of these little shoulders.

Day 19

So, for those who have been wondering, I haven't updated in a while because there's really not much to say. I was very busy at work for the last week, as my big conference took place and I stayed downtown on Wednesday and Thursday, since I didn't need to come home and nurse the baby. It was hard to be by myself on Wednesday, except that I enjoyed having the king sized bed to myself. It just really hit me that every show on network tv is some really violent cop show crap that you don't want to watch when you're thinking about your mortality all the time. Gabe came to stay with me on Thursday, and we went to dinner at the Lockwood and wandered around the loop, which was nice, while my mom babysat the kids. I think I only cried once that night.

So in the midst of my internal drama I managed to do all this stuff at work and take care of the kids and still feel kind of like I was living someone else's life. The conference happened, it was a success, and I managed to do a little bit of small talk, but not too much. They usually rely on me to do the non-economics talking, but I just couldn't get too deep into conversations about sports or other people's kids with my mind wandering back to the BRCA test or whatever all the time. And when little snafus happened, I had to admit that I wasn't worried in the least. Conference on the one hand, breast cancer on the other. Trump card, anyone? Cancer does give you that--I was able to ditch my own conference reception, using the logic that "due to an overwhelming case of CANCER I will be unable to attend."

Plus, I managed to catch Augie's cold, so I kind of sound like a dragon lady with this laryngitis, and talking would have been difficult regardless. The hardest thing about the conference was that last year, it happened two weeks before Augie was born, so I was as big as a house and waddling around. A bunch of people who saw me this year were telling me how great I looked (mostly men) or how pretty my hair looked (women). I really wanted to slug everyone who said something like that to me, but of course they have no clue, and that's my problem, not theirs.

Can you tell I haven't gotten over this part about not wanting to be bald? I just hate waiting and pretending to live a normal life while I know that soon I will be getting some prognosis handed to me, and then I will go through some horrible treatments that will make me look like a boy, an old lady, whatever. It's the public nature of cancer that's tough. You can't hide it like you could something else. If I suddenly show up at work with no hair, or with a scarf on or a wig, people are still going to know. And that's fine, but then you deal with the pity and the fear and everything. People cry around you and you wonder, am I the walking dead? Because right now I don't feel like it. I have a cold, but otherwise things are working pretty damn well.

I'm still mad about that--about taking a healthy body (except the cancer part) and putting it through hell, some of it temporary, some of it not, just to keep living. If you get hit by a car, that's immediate--the effects are right now, and I think that's easier to deal with somehow. This just creeps up on you. That's apparently especially true with breast cancer if you're nursing. Now that I'm no longer engorged, this tumor (I guess I do have two, plus a cyst) seems huge and feels like a jagged marble. It hurts all the time. It's like I was walking around and then WHAM. Cancer--big and obvious, and I and my husband must have been morons not to see it. There's no way anyone would have told me it was a clogged duct or anything but cancer if it felt like this. So of course I'm convinced it's much bigger, spreading, etc., but I'm being told it just feels different because the milk is gone. I wonder if I've had this the whole year I was nursing, or even when I was pregnant, but I couldn't feel it. Then it doesn't seem like I caught it so early. They still tell me I'm "lucky" I found it, but I think what they're really trying to say is what my ob told me straight out: "I think you saved your own life."

It's hard to be proud of that one. I shouldn't be doing that at age 34. I shouldn't have to be angry every time someone tells me a story about a 5 or 10 year cancer survivor. In 5 years, I'll be 39. My kids will be 9 and 6. In 10 years, I'll be 44, and my kids will be 14 and 11. Sorry, but that isn't good enough or long enough.

I'm going in to see my surgeon on Tuesday just so she can hopefully tell me I'm nuts and the tumors are the same size. They might be sick of me calling all the time, but I don't care. It's as if they diagnosed me, did a few tests, and said, yes, it's cancer, see you in a month. Now, that's not really how it's been, but this past 3 weeks has been infinitely longer than even the last month of pregnancy, or the first month in a wheelchair, or anything else I've experienced. I'm having very literal dreams about getting my BRCA test back and having a double mastectomy, and because I know how sad that will make me if I have to do it, I just need to KNOW. Damn this company with their patent and their $4,000 test and 2 week wait time. Women shouldn't have to go through that.

On that note, this whole experience makes me think a lot about the things in women's health that doctors don't know or even pretend to know. It seems like a huge number of women 45 and under who get breast cancer recently had babies, miscarriages, were nursing, just went off the pill, etc. And yet it's not related, they say. Then why did you ask me 7 questions about the pill in that questionnaire? And it's the way they talk about "choice" that kills me. If you have testicular cancer, they don't just say, ok, let's take them both, even if it's only in the one. With other cancers you don't seem to make as many decisions--they tell you what to do. It's as if people think you want to keep your breasts because they're breasts, and you're vain. Or that you could get rid of them because you don't need them. Well, you don't need your testicles, or your feet or arms to live either. I want to hang on to them because they're a part of my body and if they're not broken, I don't want to fix them. I'll do the stupid double mastectomy if I'm BRCA positive but I will not be happy about it. I just wish there wasn't this idea of "well, you could still do it even if it's not necessary" to make you second guess yourself all the time.

I mean, I don't think I would have done anything differently in my life if I had known I would get breast cancer. But I'm suddenly learning that there are risk factors that most women don't know about. You can't control many of them--like getting your period before you're 12, as I did. Or having your first baby after 30. I was 30 when Lenny was born, and almost 12 when I got my period, so does that put me on the breast cancer fence? But, if having my kids had anything to do with it, I would have done it anyway, and I am glad I got the chance before I found out. Also, I don't feel bad about being on the pill for 11 years. But I do wish they had a clue what was going on, because so many young women have this disease, and youth is not in your favor with cancer. Your body is not lazy, and neither is the cancer.

And neither am I, even though I've been a little bit more of a hermit. I've seen a lot of people this week, and have even been kind of social. If you see me, I will probably be talking about cancer quite a lot, but I'm finally capable of talking about other things. I still have my moments. I started crying at Lenny's second dance recital, wondering how many I'll get to see. I've done weird things, like let people who aren't my husband take topless pictures of me. I start staring off into space and get quiet, and I can't remember what we were talking about. But I'm out there. I might want to crawl into a hole when I'm bald and have a chemo port and I'm weak and in the middle of the nightmare, but maybe you all can come get me and bring me out so this summer and fall will seem a little brighter. Sound good?