Day 1,384:Skin Deep

There's been a lot going around the Internet recently about "bravery" related to how women look. A no-make up selfie is "brave." A little girl shaving her head to support her friend with cancer is "brave." Women showing what their bodies actually look like after having babies is "brave."

What a weird way to define bravery.

I used to get this comment a lot when I was bald. (White, Asian, Latino) people who had no idea who I was would walk up to me on the street and tell me I was brave; I would also be told that my head was nicely shaped, that I was beautiful "anyway." And yes, I purposely brought race into the issue. I never heard these types of statements from black folks. I would get compliments like "that hairstyle looks good on you." "I like your haircut." But no mention of a lack of hair as a sign of BRAVERY. Also, no assumption that I had cancer. Bald was a hairstyle choice, not a sign of sickness or mental illness (think of how people freaked when Britney Spears shaved her head--now maybe the girl had mental issues, but I don't think of head shaving as a sign of insanity, which is literally what was implied in the media at the time). To me, the notion of something like baldness as a sign of bravery has a tacit assumption behind it that carries not only sexist connotations but racist ones as well: women are supposed to not only have hair, but a specific kind of hair: hair that flows nicely, hair that can be styled easily. What if dealing with hair is just a pain in the ass and you'd rather not have any? What if your hair is like mine and is at a weird awkward somewhat unruly stage? I know my hair looks "normal" but it is annoying to me and I've thought about shaving it again--but I can't, because I know that wouldn't fly at work. Because I'm done with chemo, and let's face it, I AM NOT SUPPOSED TO LOOK LIKE THAT.

When the story dropped about the little girl who got suspended from school because she went against the dress code and shaved her head to support her friend with cancer, the Interwebs blew up. And rightfully so--these administrators were clearly idiots. It seems obvious that this is a stupid reason to suspend a child from school. But to me, the story was disturbing for another reason. Why was head shaving against the code in the first place? They say it is a sign of gang affiliation. I find that excuse laughable. These grade schoolers in Colorado are clearly joining gangs in droves and choosing the #1 most obvious way of showing off that fact: by cutting their hair!

No, the thing this dress code says is this: It is ok to be bald if you can't help it (the girl with cancer, after all, did not get suspended for her hairstyle), but it is unacceptable to CHOOSE to be bald--especially if you're a little girl. In fact, this is so important that it doesn't matter how well behaved you are, how responsible and engaged you are in school, you will have your little behind kicked to the curb if you look different than we want you to look. Because apparently they don't have bigger problems--like having a kid with cancer at school who might not live that long and might not want to remember her school being filled with insensitive and short-sighted clods.

According to my news feed, it is also unacceptable to be a girl who is a little too successful at dressing like a boy (a sign for expulsion from a Christian school--by the way, I love that kid's grandparents, who were all, how am I supposed to tell her to wear pink or grow her hair long? I'm not doing that). And everyone knows that it's important for women in the workplace to look good and be sexy, but to not look too good or be too sexy.

This shit is exhausting. And for women with breast cancer, I really think it takes up too much of our precious time.

I've said it before--it is completely ridiculous to me how much of the experience of breast cancer is tied to cosmetic issues like having hair and perky tits. This is not something that women with breast cancer necessarily impose on themselves--others do it for us just fine. Now, I think it's good that there are options for women with cancer, but I don't think that for cosmetic reasons. Lumpectomy and radiation are good options for many women; the surgery is less invasive, the radiation cuts down on risk of recurrence for stage 1 women like me (didn't work for me, but it does for most women), your pectoral muscle is unaffected, you have less scar tissue, etc. Notice I did not say it's a better option because you look more NORMAL. I know I don't speak for all women with breast cancer when I say this, but I found the "options" presented to me during mastectomy to just be overwhelming and somewhat irrelevant. I did the one step recon because they offered it to me and I figured I was under the knife anyway, if I didn't like it I could have it removed, and it would be easier to wear a bathing suit if I wasn't lopsided. But look--this was not my first time around the block. I just wanted to be done with that shit. The myriad of things I could have done for reconstruction were the least of my concerns. I wasn't worried about things like SYMMETRY, about getting a fake breast that was BIGGER. I had no interest in a fake nipple that would have no sensation and I made that clear. I understand these things matter to other women. I just didn't appreciate everyone's assumption that they mattered to me.

I got the impression that in some way, the assumption was that it would be easier for me to exist in the world if I looked "normal," if I looked like a woman who hadn't had an aggressive form of cancer on two separate occasions.

No one ever thought to ask me if I was OK WITH LOOKING LIKE THAT WOMAN.

The female assistant who was pushing nipple recon on me kept saying how doing it made women FEEL BETTER ABOUT THEMSELVES. They would look in the mirror and not feel sad.

Who said I look in the mirror and feel sad? Who said that I feel bad about myself? I get that it's helpful for some women. But the existence of two nipples, real or fake, does not change how I feel about myself or my sexuality one iota.

Women's sexuality is so wrapped up in the cosmetic, society would have us believe. It's why we turn off the lights for sex, it's why we enjoy sex more if we have lost weight or gotten a blowout at the salon or whatever, right? Huh. It seems to me that none of that has jack shit to do with anything. When I was going through chemo induced menopause (chemopause) and I had incessant hot flashes every 5 minutes 24 hours a day and for the first time in my life I understood what it was like to not have a libido and to not really love sex, I LOOKED GOOD. I had this cute pixie cut, I was healthy and strong and I weighed 114 pounds and I got compliments all the time--and none of that made a damn bit of difference in the bedroom, with my lack of desire and the vaginal dryness. When I went to the clinic focused on women with cancer and sexuality, the wonderful doctor there spent the first several minutes interviewing me about my relationship with my husband, how I felt about the way my body looked, etc. and I just cut her off. I said, I appreciate that you are trying to get to the bottom of what is going on with women. But the thing that has happened to my body is not about SELF ESTEEM. The poison did this to me, and I feel like someone else.

No matter how I looked.



I didn't mind having scars. I didn't mind being bald, though I thought I would mind before it happened. I don't mind only having one breast. I mind having cancer. I mind the idea that normalcy should be paramount, and that normalcy isn't the expectation of living to be 80 years old--no, the important normalcy is related to cleavage and ponytails.

Another story that was circulating a few years ago involved a woman who had had a double mastectomy with no reconstruction who had chronic pain from scar tissue and radiation. She couldn't wear constricting clothes on her chest due to this problem. So she went swimming in bikini bottoms and no top--and got kicked out of the pool for indecency. Then, the geniuses in charge of this move had to justify it somehow. They couldn't say, after all, that she was exposing her breasts. She didn't have breasts. Men without breasts were topless at the pool, but women without breasts could not be--for the following reason:

SHE WAS SCARING THE OTHER PATRONS.

That's right, ladies and gentlemen. If women have bodies that don't look ideal, if women have bodies that prove that life is full of misfortune, HIDE THE CHILDREN'S EYES. This woman was even told that she was "flaunting" her scars, as if showing up at a place and swimming a few laps involved "flaunting."

The assumption was that she owed the world a different, more amenable image. It is apparently more acceptable to folks for women to have cancer than to LOOK LIKE they have cancer.

Enough is enough.

When I had cancer the second time, I received a lot of information about breast prostheses, saline versus silicone implants, buying bras to make my chest look "even" and the like. Do you know what I did NOT receive, until I asked for it?

A script for physical therapy.

Now, when you have a mastectomy (or a lumpectomy, but the problems are much less severe), you are essentially unable to move your arm for a length of time. Your shoulder muscle quickly atrophies. In my case, you might be left with zero lymph nodes on that side, leading to high risk of lymphedema. Moreover, YOUR PECTORAL MUSCLE HAS BEEN REMOVED FROM YOUR BODY AND REPOSITIONED ON TOP OF A BAG OF WATER WHERE IT NO LONGER HOLDS ANY REAL FUNCTION. That, my friends, was what concerned me. I wanted to be able to DO normal things, not LOOK LIKE a normal person. Every single woman who goes through breast cancer should receive physical therapy. Maybe then we could reduce the problem where as many as 50% of breast cancer survivors deal with chronic pain--often for the rest of their lives.

That seems more relevant in the scheme of things than SYMMETRY.

I am not here to condemn the choices of women with breast cancer. I feel like if you have something like this disease, you should be able to do whatever the hell you want with your body, and just go on with your bad self. I just wish that there wasn't so much imposed on women like me by others, by society as a whole, that tries to convince us that the way we feel about ourselves and our lives is inherently tied to how we look. It is for me to decide if I want to drink that koolaid, not for others to decide whether to shove it down my throat.

I want women to be considered brave for being brave, not for looking "other." I want people to give cancer patients credit for staring death in the face and shrugging their shoulders, not for coping with disfigurement with grace. As women help their children plan their futures, knowing full well they might not be there to witness them, I want people to notice the resigned and wistful look in their eyes, not the hair on their heads or the swell of flesh lying on top of their broken hearts.

Day 1,375: The Best Laid Plans

I have always been a planner. I mean shit, my masters degree is in urban planning. I am no procrastinator. Even in college, I never once pulled an all nighter--because I didn't need to pull one. I wrote my papers and did the rest of my studying with time to spare. I was always the one to make plans with my friends, to do the taxes on January 5th, to pay off the credit card in full a week early. I was forward-thinking and knew how to alter my lifestyle to get what I wanted; that's how I put myself through graduate school debt-free starting a few months after I bought my first home, by myself, while earning a whopping $27k per year at a nonprofit. This togetherness was a big part of who I was, in part because I was able to do all this without being particularly fussy about things and holding on to the essentially laid-back aspect of my nature.

And then--I had cancer.

And then--I had cancer again.

I could blame what I'm about to say on chemo-brain, but that would be a lie, and I'm a terrible liar. Besides, chemo-brain is like the joke of the cancer world, not taken seriously by most, regardless of how devastating it is for those who have it, so I would never lay false claim to something like that. I've never understood why anyone doubted the reality of chemo brain, which can wreck havoc on folks' short and long term memory, destroy their concentration, cause cognitive delays and in general just mess with your head--literally. Why wouldn't it do these things? Some chemo therapies are derivatives of things like mustard gas. Anyway, considering the fact that I have a very cerebral job and have been a professional researcher for more than 15 years, I've always been damn glad I didn't have chemo brain. I mean, I may have been skinny and bald, but I was a skinny, bald BUSINESS ECONOMIST for Crissakes. I still seemed as capable of thinking, remembering, and analyzing as ever.

But something has shifted. I am no longer a planner. In some ways, I'm not really a THINKER anymore.

Gone are the days when I planned the festivities, when I took care of all the business, when I was one of the first to RSVP. Your kid is having a birthday party? Huh. I completely forgot. I didn't buy a gift yet, or a card. For that matter, you say that MY kid is having a birthday party? Like, tomorrow? Oh. I guess I'd better get on that.

I stopped paying the bills a long time ago. Gabe does that now. In fact, though he is almost the opposite of a planner, Gabe has kind of taken over the long-term horizon stuff over here. And since he's not good at it, these plans often don't come to fruition. This is why we haven't bought a new car, which we have needed to do since November. Normally, I would have taken care of that, and I just haven't wanted to deal with the hassle and the finances and everything. I can basically plan things or think about things that are happening right now, or as far away as a few days from now. I can mentally plan all kinds of things if they are PHYSICAL things. I can plan to go to the gym, have sex, make dinner, go for a walk, play a game with the kids. I can plan long-term horizon things if they are FUN--like second weddings, or Christmas parties.

But the rest of it? The things that used to occupy my brain with worry? Things like the future, college educations for my kids, my long term career horizon, and the like?

Please.

Sometimes I am absolutely astounded that I have held onto a job for all these years, what with the pregnancies, nursing, maternity leaves, cancer, treatment, and everything else. In the last 8 years I have had two kids and two bouts of cancer and somehow not only worked full time but got promoted a few times--once while pregnant, the other time while bald and sick as a dog--and I guess that says something, but one of the reasons I wanted to get out of direct research and do more of the outreach and industry-focused work I am doing now is this:

I didn't want to do academic thinking work anymore. I didn't want to write papers that would take three years to complete. I mean, who has three years?

I also don't do worry-thinking anymore. Have to tell brand new boss that I can't start the new job based out of state when I said I would because I have to have a mastectomy and oh by the way 6 months of chemo? No problem. At one point I would have worried that I would have been fired or had the offer rescinded, I would have worried about what my new coworkers and bosses thought of me, but now? I just figured, what? It is what it is. I have to deal with it, so I guess others will have to deal with it too.

Our social life has suffered because of this too. I used to be so good at reaching out, and now I'm just...not. I think people were used to me being the one to plan things, and while I still do it to some extent, it's much less common, but the pattern and the roles haven't changed, so there are just fewer plans for us. Sometimes when you have a thing like cancer, people really do want to help and see you and be present for you, but they don't know how to act or what to say and they don't want to BOTHER you, so they wait for your cue. And then...you don't give it. And it's not because you don't care about people anymore, but because your life is such a perfect shit storm of scheduling and surgery and treatment and side effects all while working and raising children that picking up the phone to tell someone you might want or need something is just one more thing to do. And you have so much to do already that it's laughable.

And of course, some people have walked away from me because of cancer. That was even more true with the second cancer. Some people just seemed...tired of it. And cancer has changed my ability to relate to normal things sometimes too. I can't get into conversations with other women about work life balance, for example. What would I say? Yeah, I'm dealing with all of that while going through chemo and simultaneously going through menopause and raising an infant (two things that were never intended to go hand in hand). No one wants to hear that, no matter if it's the truth. I can't talk to friends about the future because I don't think about the future, not really. People are already lining up childcare for the next school year, and I am just shrugging and telling myself it will work itself out.

One of the hardest things to explain to people (and one of the most painful, so most of us just don't say a word) is how challenging it is to do all of your normal things as if death is not lurking in the background. The worry that surrounds the possibility of a premature death--one that hasn't happened yet and is indeed not in the process of happening THAT YOU KNOW OF, but is still there all the time, all the same--kind of just trumps everything else. And I know that sounds deep and maudlin and even vaguely annoying, but on this page, I don't lie.

Back when I was a planner, it never bothered me that my plans might not come to fruition. I just figured I would make the plan anyway, to have something to shoot for, something to look forward to, and if shit happened, I would adapt. Now I just don't see the point. I remember an inside joke I had with a guy I was friends with in high school; he told me about the time when his dad was driving him to school in his pickup truck and was stopped at a red light. The guy hadn't spoken a word to his son nor looked in his direction. Then he took the pen from behind his ear, tossed it out of the truck, threw up his hands and said "Aw hell. What's the use of trying?" We used to just randomly throw pens and say that, laughing at the futility of it all, but not really, because we were 17 and nothing is futile when you are 17.

And now--now I get it.

I still have some reverse nostalgia, but in another sense, I have stopped my own mind from going there. I still feel a tangible pain when I see other women ten years or so older than me posting pictures of their teenage children, especially their handsome, tall teenage sons who look nothing like the son I have now who is just a little squeaky voiced mop top of crazy town. For a minute, my mind goes there, and then I just shut it down. When I'm on a wonderful weekend long "honeymoon" with my husband to finally celebrate the end of cancer treatment and I ask him how this feels to have been married almost 10 years and is the celebration sufficient, and he gets quiet and says yes and we'll do it again for 25 years and I know he is crying, I just punch him in the arm and tell him to cut it out and I don't think about it.

I don't know why I am writing this post, not really. Is this a confession of sorts? I suppose it is. It is a way of saying that it is impossible for such things as I have gone through to not affect a person, so, if I seem different, I suppose I am. And yet, I am myself, perhaps more myself than ever. I am just less concerned about how my own eccentricities might seem to the outside world. I have become more physical, less cerebral. I focus more on the body and less on the mind. I am more art, less business. I am more focused on being solitary at the same time that I feel very connected to people. I want to feel things now, not think about them. If I am to think, I want to think about things that MATTER, things like memory and time and identity.

At one time, I was a planner.

Then, the plan changed.

As all mice and men know they are wont to do.

Day 1,363: Golden Birthday

Today, my daughter turns 8. It is her Golden Birthday. We never celebrated that when I was young, and I would have been 22 on mine anyway, so I don't suppose I would have been paying attention. This day is special for many reasons.

And I really have no idea what to say.

Or, at least, I don't know how to say the right things.

On a day of celebration, is it wrong to acknowledge the obvious, even if it is morbid?

My daughter is 8. When I was first diagnosed with cancer, she was 4.

She has lived half of her life with a mother with cancer.

She has always been the sensitive, quiet type. And I don't mean she is literally quiet, though I suppose around strangers she is; she even manages to act shy around her closest friends until she warms up to the idea of them being there. I mean she is quiet in that she's not talking. She keeps everything to herself--especially the bad things; her fears, her concerns, her pain. This is the kid who potty trained herself at 2.5, and in the middle of the night we would hear her get up, run to the bathroom, flush, wash her hands, and put herself to bed. She would take care of her own nosebleeds, no matter how severe; sometimes, we would go into her room in the morning and witness the blood bath. Why didn't you come get us?! we would ask, and she would shrug and say, "I didn't want to bother you." She is not particularly affectionate, has never been cuddly.

I know a girl like that.

When I was 8, I had epilepsy. My medication was very toxic; it poisoned my liver, sometimes gave me horrible stomach cramps. One night, I felt these pains, but they were more intense. I stayed in bed, curled into a ball. I didn't want to wake my parents. It got worse and worse until I realized I needed to tell them, so I got up from bed...and promptly fell to the ground in agony. I had to crawl to their room. I was rushed to the ER, kept in the hospital for a week and finally diagnosed with a toxic overdose of anticonvulsants and (temporarily) "cured" of epilepsy. I went through tests in that hospital that were absolutely excruciating.

I never said a word.

So, I get it. I get where she's coming from, and while I am her mother and I would love for her to open her heart to me, I am not selfish enough to believe she owes me that. I don't believe that there is anything wrong with being the stoic one, the one who fails to reveal herself, the one who is always thinking about something that no one would ever guess. I believe that we greatly influence our children, but we don't make them who they are. They get to take credit for that, all on their own. I didn't make Lenny, I just carried her. I said it before, when she turned 5:

Regardless of what convention tells us, we did not make you smart. You were alert from birth, watching us, waiting to learn about the world, too interested in everything to sleep. We taught you to read, never used baby talk with you, assumed you had some reason. But when you pointed to a photography book at your grandmother’s house when you were fifteen months old and clearly said “Signs” (the title of the book), I had no more idea what to make of that than anyone else. The things you know continue to amaze me years later.

We did not make you shy around people and comfortable on a stage. We did not make you fragile, or funny. We might have taught you empathy but could not teach you the appropriate times to use it. We did not make you fussy, or willful, or contrary.

We didn't make her the way she is, but living with us has changed her. Living with a mother like me has changed her. She will probably never really remember a time before cancer entered our house. I have lived long enough to see Lenny live a second lifetime of four years. I have no idea if we will be able to say the same in 4 more years, and even less of an idea if I will be here to see her live another lifetime from now and turn 16. I don't know, and she knows I don't know, and that is a burden she will carry, and while I do not feel guilty about it, I do feel sorry. I'm sorry that in the midst of the cake I baked and the balloons and streamers I bought and the party I planned and the gifts that I wrapped that I am also the only mother she knows who would write something like this on her birthday.

But I am doing this for her, for them. I am taking account of things they might be too young to remember or too innocent to comprehend. I am remembering for them.

So, Lenny, know that I love you. You aren't just golden today, but always.



Walking
(For Lenny, Who is 1)
by Katy Jacob

It’s started again.
The whole cycle, the twelve tests.
Because we live here,
you get to see it all at once—
early heat, a river of ice,
eighteen shades of blue.
Or you would, if we let you out.
But the world around the living room table
is a grand place, it exhibits signs
of what is to come, or what is possible.
Cold grooves in the floor,
hairbrushes, paper and keys,
a place to hide things.
You’ve put your faith there.
We can’t know what will happen
in your mind as you let go.
When you do, we’ll sink back
into ever lightening evenings,
and touch this table,
knowing that’s where you learned
to let your heart leap up
as your feet traced a month’s worth of days.
And knowing too that we are not the only ones
who impatiently tell time
by how long it will take us to get to
the places we’ve never been
from the place someone who loves us
will always want us to return.

Day 1,358: Triple Negative Breast Cancer Awareness Day

The looks you receive are almost too much to bear. The gynecologists who look shocked and afraid for you. The friends who don't understand what you just said. The other breast cancer survivors who pity you. The researchers who regard you with interest.

Because you don't just have breast cancer. You have triple negative breast cancer. Scratch that--you've had it twice.

You have a subset of a disease that has been so commercialized that people forget that it is deadly. You have a cancer that was considered a certain death sentence not so many years ago. You read about your disease and you don't even pay attention to the following types of statements because you have heard them so often over the past four years:

Patients whose breast cancer is hormone negative have a poor prognosis.

Five year survival rates are much lower for women with early stage triple negative disease than other subtypes.

Women who are triple negative and also BRCA negative are less likely to respond to treatment.

Triple negative breast cancer is more likely than other subtypes to metastasize, even if it is discovered initially at a very early stage without lymph node involvement.

And then, there is the misinformation. While most BRCA+ cancers present as triple negative, not all do, and the opposite is not true: most women with triple negative breast cancer are NOT BRCA positive, so no, mine is probably not genetic--sorry. Most triple negative breast cancers are "basal like" and present as grade 3 (the most aggressive, abnormal cell mutation--unrelated to cancer stage), but not all do. In fact, I have had 4 triple negative breast tumors, and 3 of them were grade 2; only 1 was grade 3. Black and Latina women are much more likely than white women to be triple negative, and younger women are disproportionately affected, but older, white women can be diagnosed with TNBC as well. Women with estrogen positive cancer are not supposed to eat soy or consume alcohol (both are estrogen inducers), told to avoid all hormone therapies such as the pill, and encouraged to lose any body fat they can (fat is also an estrogen inducer). For women with triple negative breast cancer, advice about avoiding recurrence basically boils down to this: try to be healthy. we have no idea what else to tell you. and Good luck. Many assume that a TNBC diagnosis means an automatic double mastectomy or you are an idiot for going another direction, though there is no evidence (NO. EVIDENCE.) to support the efficacy of double or even single mastectomy for non-BRCA-positive TNBC patients.

When I was first diagnosed, I made the mistake of going on the internet. The information about TNBC was so depressing and terrifying. I ended up telling myself that the discovery of hormone receptors was relatively new, so there had to be women in the past who had TNBC but they didn't know it and they survived. I had to believe survival, including disease-free survival, was possible and even likely. But I was not meant to be one of those stage 1 women who kicked cancer's ass and went about my life. My cancer came back--in fact, some vestige of it most likely never left. I always knew that it was possible that KatyDid Cancer and she would have to do it again.

So, there is my two cents about TNBC on this day that encourages research and action into this aggressive, misunderstood and difficult disease. Now I have something else I'd like to get off my chest.

I have been feeling loss recently. This shouldn't be a huge surprise--I've lost things, right? I've lost body parts, time, health, my old metabolism and hormones, I've even lost some of my hope for what should have been a long future ahead. But that's not the loss I have been feeling heavily of late.

You see, I kind of wanted to have another kid. And then triple negative breast cancer took that option away from me.

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I know a lot of people don't end up with the family units they envisioned. I know so many people who have dealt with infertility, including myself, after Lenny was born and I had secondary infertility. I know people's lives so often turn out differently than they expected. But that doesn't make this loss less real. I mean, sometimes it hits me. When I was diagnosed with breast cancer, I WAS NURSING A BABY. I had an adorable infant who hadn't even turned one. My daughter was just 4. Augie was such an easy baby (he must have been saving it up for later), and my pregnancy and delivery were so comparatively easy, that I thought about that third kid quite a lot. And then--BAM. I was thrown into this sea of loss--I went through menopause with a baby still in the house, I was so weak and skinny and tired that I don't even remember my son learning how to walk, I was told by a fertility specialist (I later found out I was one of her first patients, so I wonder if she has changed her way of talking to women--tough love may or may not be the way to go) that I needed to give serious consideration to the following: if things didn't go well for me, would I want to leave my husband with two children or three to raise by himself?

Yeah. That.

I had conversations with Gabe about how I didn't want him to get a vasectomy because he was a young man and if I died, I wanted him to have kids with someone else. I am still very fertile, still ovulating regularly, so cancer and it's treatment--20 rounds of chemo, people--did not take that from me. I COULD, physically, have another kid. But I COULDN'T, actually, have one. I don't even have two breasts to nurse with, and I am considered to have had "pregnancy induced cancer" by some (yes, pregnancy is a risk factor for contracting breast cancer, in the first three years following--that's a fact, not a scare tactic), the breast changes of pregnancy would scare the crap out of me, I have already had a recurrence and would be at high risk of another if I got pregnant, and, though it was hard to hear, it remains true that I am less likely to live to raise my kids than most mothers my age.

I am not super-maternal, so I don't miss the baby stage specifically. I miss the opportunity to have brought another interesting person into my family and the world. I have dreams about kids who don't exist and never will. I have fantasies that I don't even tell my husband about, where we take in some wayward youth, some teenager who has no other place to go (Gabe has always said we would do that, as if it were a given--it's one reason he wanted a bigger house, I guess because he feels the need to pay forward what others did for him), and part of the reason that I think about that is because I don't really believe that I will live to see my kids become teenagers. I believe it is possible, but I no longer feel it is likely. So I have these thoughts and then I let them go. I don't cry, I don't get lost in nostalgia, I just feel loss, and even though I am stoic and always have been, even though some people have told me I'm the wrong kind of mother, the wrong kind of woman or wife or whatever, I still feel this loss. And it's real. And it's because of cancer.

There. It is off my chest and into the ether. So on this triple negative breast cancer awareness day, be aware of this: cancer doesn't end when treatment ends. Cancer can return, cancer can kill you now or later, but even if it doesn't, it changes the life you have left. We should all be aware of the role that luck plays in our lives, both good luck and bad luck, and know that it can change on a dime. I consider myself to be both lucky and unlucky, but at least I am still here, still able to do this, still able to leave this legacy for the kids I do have, who will someday read this and know that I loved them so much I wished there were more like them.

Day 1,348: Monday, Monday

It was a typical Monday morning. I had trouble sleeping the night before. I was up before 5, cold and alone in my king sized bed because my daughter had also had trouble sleeping, and my husband had gone in to comfort her. He came back to bed and I snuggled into him. Within a few minutes, I was up, getting dressed for the gym. The endless winter greeted me as I heated up the car. I was the first to arrive. When the door was unlocked, I went inside and realized that I was the first person to reach our collective destination: we had a challenge laid before us in January--we had three months to "ride across America," to spin enough "miles" to get from Mount Rainier, Washington, to the lighthouses of Maine. I was the first to make it to Maine, out of everyone, chemo be damned. I placed my last star on the board and started bragging, as it is only acceptable to do in a gym with other crazy people who are up at dawn on a cold, icy Monday morning.

We started to ride. We were sprinting. I was thinking about the time when Gabe and I went to Maine, for my 28th birthday, when we had been dating a handful of months and were newly in love and our lives were laid out before us like the lighthouses beyond the black rocks. And then, I began thinking about a conversation we had last night, in bed, about whether or not he saw me as disfigured. I don't normally see myself that way, but for a fleeting moment, I did. And he got very quiet and said nothing. I asked if he missed my old breast. I thought he wouldn't answer me. And then finally he said "a little bit. but it's not about how you look...it's just..." and his words fell away and I knew what he meant: I miss how it was before--before we knew. Before it happened.

And then, out of nowhere, came the memory of weaning my son because of my cancer. There I was, flying on the bike, when the crushing memory of how hard it was for me to even look at him in the mornings when my husband fed him out of a bottle enveloped me. I remember the look on my son's face, full of adult confusion and, yes, even hurt. I felt the weight of the things that have happened, and I began to cry, right at the moment when the instructor said and now we are climbing. So I climbed, little legs moving faster than everyone else, including the man who was right next to me, the one who was one stop behind me on the ride across America, the one I am always competing against as we stare at ourselves in the mirror. I was wiping away the tears, pretending they were sweat, and I saw him seeing me, and I thought, no I can't do this here, not here, not now. I tried to just pedal my way out of that memory, but it didn't work. I needed something else.

And so I thought of the movie Gabe and I finally watched last night, the movie that was intended to be bad and should have been so bad that it was good, but instead was so bad that we got distracted by each other's bodies and didn't finish watching Sharknado. And then it hit me, that line of dialogue that would save me from myself one uneventful Monday morning: "Beverly Hills' emergency services are second to none!" And then it was over, and I was laughing, and several people in the gym turned to look at me, because I was laughing at something they could neither see nor hear.

The ride ended. We all went home. My husband had made my coffee (he doesn't drink it himself, but he makes it for me every day), and he had fried me an egg. I was ravenous. The kids were eating, getting ready for school. My daughter told me about her bad dream, which involved the roof falling off of our house, meaning we couldn't live here anymore. I gave the usual morning orders, the ones the kids act as if they have never heard before, every day of their lives. Finish your breakfast. Brush your teeth. Augie, get some pants on. Here's your lunch.

And I settled into the morning, still sweaty and warm, thinking about lighthouses, imagining myself fleeing the endless New England winter, starting the ride again, heading back to a place that is sunny and warm, using everything I've got to make it back there. Just like any other Monday morning.

Day 1,338: Proposed

So, I got engaged yesterday. To my husband. As some people know, I decided a few months ago that we've been through so much together that we should get married, again, on or around our upcoming ten year anniversary in October. I mean, by the time Gabe and I had known each other 3 years, we had both changed jobs, I graduated from grad school, we bought and sold a house together, got married, and had a kid. It went like this:

Meet at 27, date for 7 months, have conversation about living together wherein I told him that I had no motivation to give up my independence because I loved living alone, unless it was for something more permanent and he said, yeah I thought maybe we could get married. So, move in together at age 28 after dating 8 months. Get officially engaged at age 28 after 10 months of dating in a way that will become an epic and legendary story in your family. Sell your condo 6 months after getting engaged and buy a house in a neighborhood you had never even visited. Change jobs before than even happened. Get married at age 29 because you didn't want to get married in the summer when you both would have been 28 because you thought oh how about October no one gets married in the fall because you are a clueless mess when it comes to anything like WEDDINGS. Get married almost exactly a year and a half to the day after you met, and have a kid less than a year and a half later.

It was meant to be, I suppose, though I'm not sure what that means. I reminded Gabe yesterday about a conversation we had when we had been dating two or three weeks. For some reason, after a Wilco concert, he decided to talk about relationship deal breakers. For the life of me, I can't remember how this conversation started. But I said, well I have had a lot of relationships, including one really long one, and it's different when you enter in a relationship when you're 17 versus 27. You know more about what you want, and you don't want to spend years trying to find it. You figure it out quickly. He kept pestering me about what my dealbreakers were until I finally said, well, for example, I think I want to have kids and so if someone didn't want that at all, I would believe him. He said he didn't want to have kids. I figured it was too early in the relationship to talk about such deep things when we were having fun so I said, we need to talk about something else. On went some random conversation until we had almost reached the car (we were walking along Michigan Avenue this whole time). Out of the blue he said, well, I guess I might change my mind if I met the right person. I said huh? What are you talking about? and he said, I mean, about kids. If I met the right person I would feel differently. Like, I would have kids...with you.

Two weeks in, and the deal was basically sealed. Who knew? Later he told me that he REALLY knew he wanted to marry me when we had been dating about two months and we went to Baraboo, WI for his 28th birthday, and as we were sitting watching a particularly glorious sunset on the beach, I said some nerdy shit about orbital motion. Ah, the REAL way to a man's heart.

The thing is though, I'm not sure we really enjoyed the PROCESS the first time around. We were so clueless and so many things happened so fast that we just ended up fighting over stupid things and almost ruining everything. Gabe felt some weird pressure about how to be the right kind of husband, I wasn't sure how to be a wife, and we were dramatic and ridiculous (more him than me--that's just the truth). Our wedding was great, our kids are great, but I think we felt like we were in a whirlwind and so there was the DRAMA.

And then...there was the REAL drama. You know, the cancer. The cancer that CAME BACK.

There was death, looking right at us, lingering in the corner right next to life. And there it was...AGAIN. So many things have happened. And yet somehow, through all of that, the initial drama, the kids, the cancer...it's like we've been on a really, really long date for the past 11 years.

All that stuff people say happens when you've been together a long time? It hasn't happened. It's not like 6 years in, I figured out he could be annoying. I knew that shit immediately. It's not like we stopped going on awesome and epic dates, because our awesome and epic dates look almost the same as they did when we met. We used to bundle up and go on walks to the park to play catch with a football in the snow AS A DATE. The guy took me to a drag queen show on our third date and we went bowling and to high school football games and...yeah. the same. We still have sex every day. That whole part where he starts to ignore you or neglect you? Huh? Are there other people who aren't married to eternal adolescents? OK, well, not in this house. I mean, the guy was all excited and giddy yesterday and he still is, and he is all "I am so excited! I can't believe it! We're getting married." I don't have the heart to tell him we've already BEEN married for more than 9 years. At dinner last night, he told me that with a few exceptions--cancer and some drama he had caused himself by being particularly stupid--this, what we have, is all he ever wanted.

And while everyone knows that I will never say that cancer brings people closer together, in some ways, it has. We don't love each other more because of cancer; we love each other more because we have seen each other at pretty much the absolute worst and here we are, both still around. We have learned to appreciate the huge differences between us. I mean, someone has to be emotional, someone has to cry, someone has to be nurturing, and it sure as hell ain't me, babe. Someone has to be a stubborn, manic badass, right? Can I take that role? Thanks. Also, there is this. And by this I mean THIS. Blogging has enabled me to say things to my sentimental, always complimentary and sappy and cheesy husband that I would never say out loud, not because I don't love him, but because that's how I am and how I have always been. I know he appreciates that, and it's good for me to give that to him without having to change myself. Plus, now I know he's attracted to me even if I'm bald or my breast has been cut off. And we both roll our eyes at some of the stuff that made us annoyed with each other before, and we roll our eyes at other people's weird drama as well, because at some point down the line, SHIT GOT REAL, and we stopped inventing problems.

So, we're having some real fun with it this time around. I'm going to wear an actual white dress, maybe two of them. He's going to get a tux this time (I've never seen him in one!). We're doing this whole shindig at our house, and we will probably order fried chicken from the grocery store, buy a sheetcake from Costco, and walk down either the hill if it's nice out or the stairs in the house if it's not, together, to the orchestral version of the Buffy the Vampire theme song once again, and we are doing this all on the 30th anniversary of the day I got hit by a car and lost the ability to walk, so it will be ALL US. And our kids.



I picked out a few rings online that looked kind of engagement-like; this is hard, since I hate the diamond industry. So I showed these to Gabe--because he said at the very beginning of this whole thing that we can't get married again because he hadn't proposed to me (again) yet. At some point he apparently picked a ring and ordered it--a white sapphire. He made plans for us to see the Joffrey Ballet on Valentine's Day. I had a sneaking suspicion he might propose to me then (ten years ago, he proposed the week before Valentine's Day because he thought that would be too "typical." See what I mean? We were taking ourselves WAY too seriously). I got him a Valentine's Day card that involved sharks eating people and laid out the card for him at the breakfast table, with the kids' cards too.

Everyone else opened everything, and I thought I was getting nothing. We were eating cereal, all of us in our bathrobes. Gabe whispered to Lenny and she went running downstairs to the basement. She came back with a big pink construction paper envelope. Inside was the construction paper card Gabe made me, next to a construction paper package. I opened it, and there was a ring inside. Gabe was down on one knee and he was crying. He looked like he wanted to say something and didn't know how. And then he said "Kate, you're the most amazing woman I've ever met. Will you marry me?" The kids sat there looking both excited and dumbfounded at the same time. I laughed and said yes. And then I read the card. It was signed

"Love, Gabe. Your once, current, and future husband."

We will see some of you on October 11. Be ready.

Day 1,334: Choice

I have been thinking a lot about the concept of "choice" recently. We are bombarded nearly every day with this concept, with this notion that life is just a series of choices that are laid out before us, and the content of our character can thereby be judged by whether or not we made the "right" choice.

The thing is, I think that the whole concept of choice is actually just privilege in disguise.

When we regard our privilege as a choice that we deserve, we cause all kinds of problems. We begin to believe in the concept of meritocracy, wherein everyone gets what he or she "deserves." We take advantage of social institutions when it suits us and then decry every other institution as an affront on our free will--schools, hospitals, governments, banks.

Let me just say right now that I am a supporter of institutions, of society. I am not a person who believes that the family is beyond reproach, because I know that not all people come from functional, non-addicted, non-abusive, comforting, intact loving families. Some people's families are the cause of the majority of their problems. Some people are destroyed by their families, by their churches, by the very places and people whom society pretends are intended to protect them. And this does not just happen to "other" people. It happens to us, to the people we know and love. And so there is a place for institutions, a place for spaces that exist to help people who need it, especially when "choice" is not choice at all.

If this all sounds too obtuse, let me give some examples. When I was in college I took part in an Urban Studies Program in Chicago for a semester. One of my classes was "Women in Health." It was mostly an experiential learning class, wherein we visited women's shelters and other places and learned about public health issues affecting women. I felt guilty in this class all the time, because I often felt angry. It took a while to figure out why. We were being "exposed" to this life that we supposedly knew little of, this life that included poverty and a lack of health care options. We were supposed to think about how lucky we were in contrast--we were not supposed to RELATE. One day, we were being lectured by a midwife, who was teaching us about natural birth and all the wonderful "choices" that the evil medical establishment didn't want us to understand. She said we should think about birth options the same way that we chose our respective colleges--based on what was best for us and what fit our value system. At that point, I felt the need to challenge her deep in my 20 year old bones. So the following conversation ensued:

K: Well, I don't know about that. I didn't choose a college based on what was best for me. I went to the place that gave me the most money. I didn't even visit it first.
M: Well, um...
K: So, how many women do you serve every year?
M: Well, about 100.
K: Huh. Thousands and thousands of women give birth in our hospitals in Chicago. And do you accept everyone?>
M: I'm sorry?
K: Do you accept everyone? What about me? I had epilepsy as a child, which is a preexisting condition and can come back at any time. I am considered high risk for a lot of medical procedures. So, could I give birth with you?
M: No, I'm sorry. We aren't equipped for that. You would need to go to a hospital.

Do you see what I mean? There is choice, if you are privileged enough to enjoy it. I was not angry that this woman was a midwife, and I do not have any problem whatsoever with people's various childbirth decisions. But not everyone is OFFERED the choice, and I did not like the assumption that everyone in that room had the universe of choices available to her, when I knew that I did not. Not everyone has access to choice; just having that access is a privilege. At the time I took that class, it was difficult if not impossible for lower-income, black women in particular to get any information about breastfeeding, for example, from hospitals, lactation consultants, or anyone else. And such women's jobs were not easily conducive to the practice anyway.

The same issue about choice is true in so many situations. I told myself, when I escaped a threatened gang rape by 10 boys when I was 15 years old, that I had "chosen" not to drink, and that was why I got away (though of course, I didn't really get away, not in the clean sense of the word--a lot happened to me before my escape), and why I had to help the next girl, who was too drunk to "choose." But there was no issue of choice in that scenario. There was nothing but dumb luck, and defiant bravery, and trauma that lasted for years. My choice had been removed by others who were making a sadistic one. Those boys held the privilege and the choice, not me.

Or let's think about school. I was a "gifted" kid before that meant too much in the larger culture. I had gifted programming for one year in grade school, and was one of a handful of girls who got sent to the high school for math in 8th grade. Much of the curriculum was slow for me, I suppose. But it never even occurred to me to act out, or be bored, or challenge the teachers. My mother always told me that I had no right to boredom, no right to believe I was entitled to people catering to my desires. And so, I learned some things. I learned that other people were better than me at things. I learned to fill in time, learned to overcome my shyness by socializing with everyone, learned to place myself amongst people and figure out what I could contribute versus what they could contribute. School was not about "choice," not about discovering what I liked to learn versus what I believed to be a waste of time. It was about placing my own priorities inside a social context of everyone else's priorities. It was about learning to follow rules, and eventually, learning to break them, but only after earning the privilege of knowing I wouldn't get in too much trouble in the process.

Why am I writing about this? Well, because in the context of breast cancer treatment, patients are faced with a litany of supposed "choices." But in reality, our choices are extremely limited, especially those of us with aggressive forms of the disease for which there are few options available. What's worse, there is so much publicity of the disease that everyone is an expert who can question our "choices" and judge us on the basis of them. Here is what we know: having a healthy lifestyle can decrease the risk of contracting breast cancer. It should be noted that having a healthy lifestyle decreases the risk of contracting many diseases, if not all of them. This has nothing to do with prevention--it is simply a reduction of potential risk. No medical professional would ever profess that being healthy means you won't get cancer. Moreover, women are told they can "choose" what surgery to do, but many women make surgery decisions with little or no information to go on, and even those who make very informed decisions are judged by everyone and her mother, other breast cancer patients included. And these are just a few examples.

But there are so many choices we cannot make. We cannot go home, cannot go back. We cannot avoid our own emotions, or the lack thereof. We might "choose" a chemo regimen to some extent, but we can't choose what it does to us, we can't decide whether or not it will work. We can choose to exercise like mad, just like we did before we had cancer, we can choose to be skinny and fit and terrible at vice and cancer might come after us anyway. Those who judge, those who have advice, also have privilege. They have the privilege of health, of not being us.

We are lacking that privilege. So what is choice in this scenario? What are things we can choose?

Well, to some extent, we can choose only one thing: to be ourselves.

Some of us will be paralyzed with fear, some will be filled with optimism and vim and vigor, some will want to cry and be unable to do so. People have remarked to me that I deal with illness (and maybe other problems too) differently than other people. I just keep trucking. I just keep doing almost everything that I did before, even if it makes no sense at all. I have never thought of this as a coping mechanism, or a "choice." What choice did I have? I had 100 seizures a day when I was 6, I lost the ability to walk at age 9, I faced my mortality and the notion of bad luck and circumstance way back before I understood that other people could choose not to think about such things. My mom called me a "trooper," but I never felt like one.

I never felt that I had a choice. I never felt that health or physical ability were natural and assumed--they were privileges, and they could be taken away or lost. And that did not mean that I should be lost. Circumstance and fate were just that--they were not reflections of ME and my worth.



The extent to which I have felt fear with this recurrence is muted. As my husband told my ob-gyn today, "I think she has cried for a total of 5 minutes during this whole ordeal." And I said, I don't cry. I wish I could, but I can't do it. Gabe said I was like a rock. My doctor had just interpreted my ovarian ultrasound results as "normal," as the huge cysts I had at the time of my D&C have disappeared, though I still have one smaller cyst that is apparently of the type that exists in many healthy women. He sympathized with me when I talked about the ordeal of spending an hour to have the port and tube removed from my adjustable implant (a procedure I would have liked to have done immediately after surgery, but I wasn't allowed to, given the healing process and then chemo). Gabe sat with me through it all, though he didn't look until the end, when I had to look as well, and see the gaping hole under my arm and the blood that was just EVERYWHERE. I told the doctor I found such things to be oddly fascinating, though it hurt like a bitch today. I complained about the nearly 10 pounds I have gained on chemo. He looked me up and down, told me I looked better than ever, that he loved my hair, that I was dealing with all of this better than anyone he knew. He saw Gabe tearing up and said he was the one who needed help. Gabe laughed and said no, I have got to be strong for them! And my doctor said that I could choose to worry all the time, I could choose to try to change everything in my life to conform to what other people think will cure me, I could go online and look up all kinds of statistics, or...I could just keep doing what I was doing.

Therein lies the choice. You could be a "normal" doctor, who would never say such things to a woman. You could lord your medical knowledge over her, use the privilege of your own health to give her advice. Or you could choose to be much more human, and shake your head and say, no one should have to deal with this shit. It's hard on your whole family. You didn't deserve this. You should just keep looking forward. You are doing great. If you are a certain type of person, you would be slightly "inappropriate," and hug the woman for a long time, punch her husband in the arm, and tell him:

They don't make them like her.

And if you are the woman in question, you could shrug your shoulders and look away embarrassed, but in some secret place in your heart you can choose to actually believe him. And maybe that's enough.