Day 813: Don't Think Twice, it's All Right

So I think I'm going to be OK.

How is that for an understated, casual opening line?

I mean, I don't have a heart condition. And, I don't think I have lung mets.

Can I get an AMEN?

Those issues I was having literally scared the shit out of me. It was not in my mind, and now I think I have an inkling of an understanding of what was really happening--but I'll get to that later. When my blood pressure shot up to 143/80, I was convinced my heart was having trouble. And no, it's not because I'm a hypochondriac. It's because I had radiation over my heart AFTER taking this heart-terrorizing medication affectionately known as either the Red Devil or the Red Death, because while it looks like cherry Koolaid in that syringe, when they push adriamicin into your body, you literally feel the coldness of something approaching death course through your veins, and the nurse looks at you to make sure you're still breathing, and then they do that shit to you again and again. So, you know, I wasn't nuts for worrying.

But when I saw that blood pressure reading, I said, screw this. If they want to put me on those damn beta blockers again I'm not doing it. I hated those. So I made a bunch of changes to my already healthy lifestyle. I love coffee, but I don't drink very much. At home I make it half-decaf and I pour it out as soon as it gets lukewarm. A few days a week I was going to starbucks for iced coffee, no sugar or milk, and since that's mostly ice, it didn't seem like a big deal. I was having one drink every night to help me relax. While we were up north, I was making "up north dinner," or crockpot dinners that could last us three nights and not necessitate going to the grocery store, which was really far away. Things like vegetarian chili made with canned beans. Chicken-rice stew/soup made with those packaged rice things. Homemade pizza. I don't eat a lot, but I do eat like a real person. I'm no "salad's enough for me" girl.

This crap was terrifying me so I just stopped. Cut out caffeine, stopped drinking, started looking closely at sodium content and getting annoyed at how much sodium there is in everything. Even if you give up bread, it's bad. How do low carb folks do it? Dairy products are the WORST with sodium. For a while I was overdoing it and basically eating fruit for dinner, spinach salad for lunch at work. I continued my same workout routine. I was HUNGRY.

And I felt better. I scheduled an acupuncture appointment for the first time in a year and a half, and that made me feel even better. My last memories of acupuncture are positive, but I was never truly comfortable when I was doing it. The first time, I was just suffering terribly from chemo. Even when I was done with treatment, I was in menopause, having hot flashes while lying on the table with needles sticking up out of my translucent newly-grown hair. My scar tissue pain made it difficult to lie comfortably. I always stayed for the minimum 25 minutes and got out of there. She expected me to do the same this time. When she came to get me, I sent her away. I am lying here with nothing to do and nothing to think about and I'M NOT LEAVING! She laughed at me, gave me as long as I wanted. I am naturally restless, so I made it about 45 minutes--a record.

I went in for the heart tests on Monday. It was 100 degrees and due to the scheduling, I needed to take the whole day off of work for the appointments, so I drove down to the hospital. The ecchocardiogram was painless, and relatively interesting. I had one done when I was admitted to the hospital for heart problems due to Taxol but that whole weekend was so difficult I don't remember much of what the tests were like--even though I will never forget the kindness of that one doctor. An eccho is basically an ultrasound of your heart. The technician showed me everything--this is your pulmonary artery, that sound you are hearing is the blood pumping, those colors mark different arteries. It looked and sounded just like those early ultrasounds you see of your fetus in the womb. I asked if she could give me results, and she said: "I can only tell you if something life threatening shows up, that would make me concerned you were about to have heart failure. Barring that, the physician needs to read it."

She sent me on my way. I went to get the Holter monitor. That was fast--leads and wires taped all over my torso after she literally used pumice on my skin to rub it raw and make sure they would stick. I had this bulging monitor on, tape up to my chin, and I was wearing short shorts and a tanktop. Oh well, that's one of the benefits of living in a place like Chicago. You walk around the Mag Mile like that, going shopping, and the androgynous employees at Zara just look at you with utter boredom in their eyes, and people texting on their phones almost run you down because they are paying so little attention to anything outside of themselves, and no one gives a shit, because there are much stranger things happening.

And then, I waited.

Tuesday evening I got an email message from my general physician. Your Eccho is normal.

Late in the afternoon yesterday, prompted by my email asking her for results, I got another message: Your Holter results were normal, even during the one indicated time when you felt your heart racing.

I had been given a diary, wherein I was supposed to write my symptoms if I experienced them. Shortly after eating an Mburger for lunch around 1 pm, as I was STARVING, my heart started racing. I recorded it. I drove home, laid down, read a book about typhus destroying Napoleon's grand army in 1812 because that's the kind of thing that puts my issues into the grander perspective, and it was still racing.

Salt from the burger. Dehydration. My heart is fine--but there is something odd going on, and I think I now know what it is. I was thinking about this on Tuesday, when I finally got to take the tape and leads off around noon. I locked the door to my office, and thought I could just casually remove them. Wrong. It was like the smooth-chested female version of the 40 year old virgin up in here. Taking that shit off HURT. I still have red marks from it. I told Gabe he'd better keep his heart healthy so he never needs to have one of those monitors put on his hairy chest.

Jesus.

Water retention. In the eccho room, they took my blood pressure. Twice. It was 105/60. I was more nervous on Monday by a large margin than I was when my BP read high, so don't tell me that high reading was stress-related. I was also newly addicted to drinking water. For the 10 days or so that I've been on this experiment, my weight has not fluctuated much. I weighed 116.5 this morning. At night, I usually weigh about 118. When I was having the heart and breathing issues, I would sometimes weigh as much as 121 and I would complain about how fat I felt, how bloated I was. We make light of these issues as a society, even our husbands roll their eyes at us. We fail to recognize that what presents as vanity might actually be a real, honest to God PROBLEM. And like so many things, we trivialize it, sweep it under the rug, focus on the wrong thing--the "fat" days, when there's water pressing on your heart and lungs, the tits, when there's cancer trying to kill you. Well, no more. Some of us breast cancer ladies are getting testy enough to make our OWN shirts. Save second base? Really?

Water retention. In an extreme form. Water retention so bad, it put pressure on my heart and made it hard to breathe. Water retention that was worse at certain points in my cycle, but never absent. Yes, I realize that I'm self-diagnosing. But until I keel over, I'm going to make the unheard of assumption that I understand my body, perhaps better than anyone else. And my body has changed. The thing is, when your body changes drastically AFTER having some minor issues like CANCER, it can be hard to correctly place the problem and not sit around thinking about what your kids will look like when they're grown up and you're dead. Just saying.

Yesterday, I got myself an iced coffee for the first time in almost 2 weeks because it was so damn hot even at 5:30 in the morning while I was taking my walk. I drank two thirds of it but it took me a few hours. I got up from my desk to go to the bathroom, and I had one of these surreal post-cancer moments. I sat there--me, of the iron bladder, the woman who used to be able, even AFTER having kids, to go 7 hours without using the bathroom--for what must have been three full minutes, peeing. I mean seriously. Folks who came in after me were leaving and I was still taking a piss. My body was telling me, look lady, you're retaining too much of this shit. There's one more vice you just can't have.

Goddamn chemo-induced menopause leading me into a second puberty bullshit.

I got my first period at age 11. I went on the pill at age 18 and went off at age 29. I had my first child at 30 and my second at 33. I never, at any stage, had PMS symptoms. Heavy bleeding, vomiting, yeah I had that. But bloating? Depression? NEVER. And now I have days of the month where I get so down I literally feel almost worthless. I think, I am going to lose my job because I'm no good at it. My kids hate me. I don't have any friends. WHOA! KatydidNOT ever feel that way before these hormones blew up. Never.

Until now.

If I was 20, I wouldn't think about it. At my age, it's hard to believe my hormones could take me for this kind of ride. But there it is. I've been feeling like a rockstar at spinning, still a little out of breath, but better. And it's been 9 million degrees in Chicago and the air quality is horrible so that's not a huge shock. But here's the thing.

If you have lung mets, your symptoms don't get better. They might start out mild or barely noticeable and stay that way, but they don't get BETTER.

So screw that chest x-ray man. Just give me 47 bottles of water and I'm good.

Not just good but GREAT. I feel skinnier, more like myself. I won't throw out the order, but come September, I just don't think I'm doing the chest xray. Now, some of you will think I should get the xray anyway. Other survivors have said, now if it was ME and I had a chest xray order I couldn't get there fast enough! But you know what? I've had more radiation than any human being should ever have in her life and I don't need any more just in case radiation, any more my God I'm going out of my mind until I get those results, tests. I mean, I feel pretty damn good.

Last night it was 103 degrees and extremely humid at 6 pm. So of course, while the kids were at gymnastics, I went spinning. And I felt awesome. I drank two bottles of water in 45 minutes. I had to pee the second I got off the bike. BUT. The last song, during the stretch, was Purple Rain. And there I was AGAIN, tearing up in the gym, this time with happiness, passing it off as sweat as I realized that my heart is ok, my lungs are probably ok, there's something going on in my chest that might necessitate an xray, since it hurts so much, is so tender that if Gabe tries to touch that breast tears sometimes come to my eyes and if I push on the left side of my sternum I wince, but THAT IS NOT CANCER. Ruined pec or cracked bones from radiation, maybe.

But it's not cancer. Cancer doesn't present like that.

So there I was, flying on the bike in the sweaty gym, wearing a bright blue bandana on my head that I bought at the wig shop when I had my head shaved two years ago. Suddenly I had this image of myself when I was 25, wearing this mod dress, showing up at night at class in graudate school after I got off of a full day's work. Another student told me I reminded him of Mary Tyler Moore. I thanked him, though that hadn't been my goal.

Maybe it should have been. I lived in Minnesota for years. And you know what?

I think I'm gonna make it after all.

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 697: Milestones

There was a time when the word "milestone" had a very specific and even ominous meaning for me. A few years ago, I used that word to refer to various types of cancer treatment, surgery, or cancer-related anniversaries. It's supposed to be a "milestone" when you finish surgery (more like a bump in the miles-long road, considering how many of us need to go right back and do that shit again), when you start chemo, change chemo, end chemo, finish burning yourself, grow your hair back, or whatever. I'm not sure any of that is really true, now that I'm not in the middle of it. Those were big things, but they also represented mostly sad things, and milestones don't need to be as such, even for people with cancer or other illnesses or disabilities. While the rest of my life absolutely continued while I was in active cancer treatment, no one outside of my innermost circle seemed to take note of the normal, every day milestones (save my birthdays, which were celebrated in large fashion, mostly because they signified that, well, I wasn't dead). It's worth noting how things continue to change and progress no matter what else is happening.

So today I wanted to give a shout out to some of the happier, more pedestrian milestones we've experienced over at my house recently:

Lenny, who incidentally recently turned six, got into an excellent gifted magnet school in the Chicago Public School system. At first I felt ambivalent about this, as my innate personality bristles at the intense separation and tracking we've instituted amongst children at such young ages. Then I thought...wait a second. There are only 30 kids in the city accepted into this school. If she can cut it through eighth grade, she is almost guaranteed a spot in a selective enrollment high school in 8 years (if those still exist). That saves us 12 years of tuition (a damn good thing if you own two houses). It also means that if Augie doesn't get into a magnet school for grades 1-8 (which is fine, because the local public school is good as well), all the tuition we've saved for her for 12 years and him for 8 years would enable us to send him to private high school if it came to that. Thanks, Lenny! You're better than the IRS at tax refund time!

Not to be outdone, on the same day that Lenny received her acceptance letter for this school, Augie up and decided to potty train himself. He had been doing well with wearing underwear, until it came time to poop, and he just wouldn't do it without a diaper. Then he changed his mind, and just like that, he was done. We can now officially retire the diaper bag. Now, I've never been a huge advocate of worrying about potty training in general. You don't see many ten year olds wandering around wearing diapers, so why argue with some stubborn little monster? The kid can barely sit still or contain himself for any reason. Why would I fight him about that? My mom tells me I just used to fly through the room all my life as a child, like a tiny little blur, and she didn't see the point in trying to make me sit still to use the bathroom or do anything else.

Now that my son has reached this milestone, I find the conversations strangely unnerving: "Look mom! I fit my penis in my underwear!" Or, peering in the toilet, he decides what kind of animal that shape looks like. Or, I give him a Snow White doll as his present for this achievement, and before he asks if he can sleep with her and takes all of her clothes off (she is, he decided, 20 years old, so I guess I can be glad he isn't interested in someone underage), he looks simultaneously happy and disappointed when he says: "That's Snow White. The Doll."

Jesus, mom, didn't I tell you I wanted Snow White? The GIRL? Like when I said I wanted a mountain from Santa, I wasn't talking about a toy mountain, woman.

I can't say I've had any milestones recently, really. What I see as an achievement might seem ridiculous to everyone else. For example, I made an appointment at the gym to have my measurements and body fat percentage assessed last week, and I was pleasantly surprised by the results. My weight and BMI are the same as 9 months ago, but I've reduced my body fat percentage to 17.2% down from 17.9%, and most of my other measurements have gotten smaller, with one notable exception. My thighs are an inch and a third bigger. Holy quads, Batman! No wonder I've had to buy new shorts.

Speaking of spinning, we had a huge milestone when Gabe accompanied me to the gym for a few classes on the bike. Gabe! In a gym with other people! Not just trying to do three pushups with me lying on his back (those Katy-ups are actually pretty impressive) or doing pullups on the monkeybars in the park. Those were some moments of joyous, ok not really, but at least sweaty and contentious, bonding. The consensus was that he hated it, and he wants to box instead, but he gained some appreciation for why I love it, and now he knows how fast I can sprint.

What else? Well, against all breast cancer advice, I've become one of those people with a signature winter and summer drink. Thus, I have just finished off my first enormous bottle of Tanqueray. By myself. It took me a while, but still. I was never much of a drinker before, and I don't think my nightcap ritual puts me in that category, but at some point I guess I figured, what's the use of trying?

Gabe and I are quietly approaching the 9th anniversary of our first date, so there's another milestone. Soon we'll celebrate a bunch of birthdays: Augie's, Gabe's, mine even. I'm pretty sure I'll keep getting older for a while, even though the following things are also true:

When my kids hit these milestones, I feel the normal surge of parental pride and happiness. I also think to myself, thank God. Every time they achieve something, every time they move a little further into their own futures, I think: See, I was here for that. If things take a turn with this damn cancer, at least they got to that point. They will be educated. They will use the bathroom by themselves. They will develop their own taste in women, and in men. They don't need me. Other parents get wistful, or cry, or feel useless, in these situations. I think YES! THEY DON'T NEED ME! THEY'LL BE FINE! If I have to go, that is. Let's hope I don't.

My body itself feels like a milestone. There's so much I can't do, and I'm not saying that to be defeatist. I can't do high-impact sports because my hips never grew in normally after my car accident and I never had physical therapy. My left pec is permanently burned and I still have chronic pain in the breast/chest area that can be so bad I wince and tears come to my eyes, and it comes out of nowhere, when my thoughts are far away. I still have to ask them to adjust the light/fan combination at the gym to dilute the strobe effect so I don't have to worry about having seizures. When my back hurts, or I get a bad headache or I suddenly have to go to the bathroom all the time because I have a cold, I worry that my cancer has spread. I am already in the near-panic zone awaiting my next mammogram in a month. I am living in a perpetual state of bated breath, crossing my fingers and hoping hoping hoping to get to 2 years NED, something most moms my age don't think about on a daily basis.

When I go on business trips, I ask for the pat down at the airport, and I realize that I will have to do that for the rest of my life, to avoid the extra radiation from the full-body scanner. On those same business trips, I'm known to do weird things. When it's 75 degrees at 6 pm in Kansas City, I think it's a good time to put on my bikini and go to the outdoor pool. And then I swim. By myself. In the rain. I go inside when I hear thunder. Men look at me funny. I realize that someone with a seizure disorder history should never swim alone.

I realize it. I realize that it might seem like loss to some people, to think of things that I cannot or should not do. All I can think is, look! I'm 36! I've had kids, and cancer, and epilepsy and all kinds of other things. And the girl 15 years younger than me is reading my assessment results in the gym, and after announcing my body fat percentage she says to me, here's where you are, and she points.

To the line that says "athlete."

Wait, are you talking about ME? Athlete, my ass! That's not a real milestone, I realize. It's vanity more than anything. Unless you have lost the ability to do just about everything with your body that a body was meant to do: eat, sleep, walk, talk, have sex, sweat, cry. Then it is a milestone. It all is--this body, those kids not needing me, the calendar turning into another month or year. This life is a milestone, and all of that cancer stuff was just a part of it.

Day 679: On Joy

“Things won are done, joy's soul lies in the doing." William Shakespeare

Yesterday, I did something typical of me, one of those things that probably makes me ineligible for motherhood awards, if they made those.

I stole my daughter’s jump rope.

Here we are, in the ides of March (oh how different life is than at this time last year), and yesterday it was 80 degrees. In Chicago. I left work early because I was too restless in my windowless office, found the only pair of shorts that hadn’t been put away for the winter (some workout shorts that barely cover my behind) and a tshirt and took a walk. Then I picked up the kids and they played in the backyard; Lenny was excited to show me her newly-learned jump rope moves. And I just couldn’t help myself. I told her to help Augie blow bubbles, and I took the rope to use myself.

It’s been at least 25 years since I’ve jumped rope. I do not have anything approaching an addictive personality, and yet I think I was addicted to jumping rope as a child. I couldn’t do double dutch—well, I never really tried—but I could literally jump rope for three or four hours without stopping. I mean, my mom would have to call me in to remind me to eat or go to the bathroom. I didn’t see the point in taking a break. I weighed 45 pounds in the 4th grade, so you can imagine how little I was at age 6 or 7 at the height of my jump roping prowess. Why, you might ask, did I do this?

I just loved it, with an irrational love that could’ve probably physically injured me considering the intensity with which I loved it.

That’s a love I thought I had lost. When I first started going to the gym regularly, back in late 2007, we would jump rope sometimes during strength training classes and doing it for 30 seconds would kick my ass. Instead of just feeling frustrated or weak, this made me feel like I had lost a part of myself. So yesterday when I stole the rope, I didn’t know if I could do it at all. I have issues with high-intensity workouts due to my hips (probably the reason I don’t remember jumping rope at all after my car accident), and this rope was made for a child, not someone like me with 5-foot long legs, so there were two more problems. Oh well, I just kind of literally took candy from my own baby so I guess I’d better eat it, right?

And I started by jumping, then skipping, only stopping when I got tripped up by the too-short rope. The kids counted for me. Lenny realized what I was doing and declared a jump rope contest was in order. I said fine, you’re on, thinking to myself, it’s been like 28 years but I’ve totally got this. I didn’t want to give the rope back to her when it was her turn. I realized I could actually teach her correct jump rope form and I started trying to remember all the rhymes we used back in the day. I told Gabe later that I wanted to find a correctly-sized rope, since it was such good exercise, even if I only did it for a few minutes a day. I imagined myself stealing away to the back patio or even jumping on our front porch in the spring. I mentioned the cardiovascular benefits, how I must be able to do it easily now because of spinning, I sat there and heard this stuff spewing out of my mouth about how great jumping rope is for you.

What a load of crap. Jumping rope might be healthy, sure. But mostly it is so much damn fun you don’t even care how idiotic you look using a pink glittered rope when you are 36 years old and you don’t even realize you’re hungry or that you only got three hours of sleep the night before. It’s fun to count, and hear the slap of the rope or the whir in the air as you go faster.

So that’s when I had this jumping rope epiphany.

You know how everyone talks about the magic of childhood, the way that you feel things so intensely when you’re young, the way the small things are such a marvel the first time you experience them, the way teenagers just want to live, dance, fuck, experience their bodies? You know how we all lament how that gets lost and think we can only experience these joys again vicariously, through our children?

Well not me. That focus on the small things, that childish joy, that’s me, and it’s always been me to some extent, and maybe that is one of the only things that makes me who I am. Cancer did not give that to me. Maybe epilepsy did, or near-paralysis, or something else. Who knows?

You might think I’m nuts or that I’m just saying this to make myself sound somehow more positive than I am. Don’t get me wrong—this not so sunny personality hasn’t changed. I’m a cynical person. I’ve been a grown-up, all responsible and working hard, since I was about 11. Someone once told me I was “ultra-sane,” and I really didn’t know how to take that, but I knew it meant that logic and reason are defining aspects of my sense of self, for better or worse.

But that joy, that marvel, that wonder, has always been with me. A teenager I know who is a freshman in college laughed at me the other day when I said “you know what, I don’t GO to the park,” explaining why Gabe always takes the kids over there. My mom was the same way—I swear we only went to the park with our friends and their parents, because she just looked at us like we’d lost our minds if we made the suggestion that she come along. I can’t vouch for her, but I’ll tell you why I hate going to the park:

It’s boring. As a parent, I am supposed to watch my kids while they play. I push Augie on the swing because his stubborn ass refuses to learn how to pump his legs (a skill Lenny mastered remarkably early, by 2 and a half). Augie doesn’t even try—he knows some older girl will think he’s cute and take pity on him when I walk away after five minutes, and he will get pushed. The thing is, it’s boring to me, because I WANT TO BE THE ONE SWINGING. And I can’t—because it’s rude of me to take up a swing when there are so many kids around. Because then I can’t keep an eye on my own children, especially the younger one who is crazy and always trying to escape. I want to play, and I can’t, so it pisses me off and I feel bored so I stay home and listen to music really loud and dance around the house (apparently Gabe and the kids sometimes spy on me while I do this). Now, Gabe does play at the park. He throws five kids on his back and swings them around, and they jump all over him and he plays shark attack and does cartwheels and pull-ups on the monkey bars. I don’t actually have any desire to do any of those things. I want to do what I did as a kid:

I want to play by myself.

What a shitty thing for a mom to say! I am supposed to just marvel at my children’s joy. Every time one of them gleefully yells “look mom! Look what I can do!” and I see one of them figuring out how to jump rope, or throwing a balloon in the air, or jumping for no reason, or swimming on their own, or pulling on their own pants, I am happy for them, of course. But a little part of me is also thinking “me too! Look at me! look at what my body can do!” I just don’t have anyone to say that to, and if I did say it, I would sound insane. When Augie joyfully looks at his round belly or barges into the bathroom when I’m in the shower, opens the curtain and says “mom! You have a booty!,” I alternately laugh or tell him to get the hell out of here. But somewhere inside I think me too! Look at this! The last time I went into Victoria’s Secret and a saleslady asked me if I wanted something with “lots of support” (is that the way to politely ask a small-breasted grown woman if she wants a padded bra?), I answered without thinking: “no, I’m pretty happy with what I’ve got left,” and that answer was so honest and true that I didn’t realize why she looked at me funny.

So what I’ve learned, rather than how to not feel the newness of everything and the strangeness, the mystery, of my own body, is how to lie about it. How much easier it is, in the end, to pretend that I can’t go to the park because there’s housework to do (with Ke$ha on the radio), how much simpler it is to say that I go to the gym because I would like to survive cancer, or because it’s healthy, or even because I’m vain. How much easier it is to say that I lift weights because it is good for my metabolism.

Let’s break down why Katy loves the workouts she loves. I love spinning, and I love strength training or pilates in the gym or studio. There are two reasons I love these things that other workouts don’t necessarily provide: loud music, and a mirror.

I’ve tried to explain the music part. I could literally be happy for days with nothing but myself and some loud fun songs to jam to; I’m like a teenager that way. It’s never lost its appeal. It’s even better when the music’s so loud you can’t hear yourself think, because honestly, I think so much, thoughts are flying in my brain in such rapid succession, that I just want to scream shut the fuck up to my own gray matter, but I can’t, so I just find a good playlist and TURN IT UP. Or they can do that for me at the gym. The mirror is just as important to me. I only wear short shorts and tank tops at the gym now. The reason could be the equivalent of trying to squeeze into jeans that are too small: if I see myself I will figure out what I need to improve on this body. Or, the reason could be that I am narcissistic and I like to look at myself. Or it could be because I have finally, after almost two years, regained all of the sweat glands that chemo killed in me, and I actually get hot and drippy in the gym, so I try not to wear much. Or…

I could admit that it’s because I have this lifelong complicated relationship with my body, wherein I feel somewhat separated from myself. I have warred with my body so much, and every day I wake up and am surprised. Surprised about what? Well, the waking up part, for one. The way I can tell my feet to go one in front of the other and they comply. The way my crazy-thinking brain works. It hasn’t, after all, always been thus. I like to see my muscles in the mirror, my kind of borderline too-big biceps and my strong legs and even my somewhat sculpted shoulders. And I don’t give a rat’s ass how that sounds. I just think to myself, look, that works, that’s strong even, look how fast and crazy you are when you sprint on the bike.

Seeing your body work is another kind of joy, especially when you never really get used to it or expect it. Perhaps this is the reason I’m no good at competitive sports. I am just not at all goal-oriented with fitness. For me, it’s all about my relationship with my body, not in trying to accomplish something or win. For me, the accomplishment is in my working body itself. Seeing health where there was once sickness, seeing strength where there was once atrophy, or hell, just keeping going when a lot of people can’t do that anymore—that’s it, that’s what I’m trying to do.

I was talking to the gym manager at work about the gyms where the goal is to beat your previous score, to see if you can beat the person next to you at the workout. She said that wasn’t her style and I had to agree. She was cracking up when I said, yeah, if I wasn’t able to do something as well as someone else, I’d be all punching their arm and saying “good job! Good for you,” not giving a shit about my own performance. I guess that’s the reason I won the sportsmanship award for every sport I ever played, but also why I gave up competitive sports early. I loved basketball almost as much as jumping rope, but I quit playing on teams when I was around 12. I saw how much it mattered to the other girls (and boys, when I played on co-ed teams—a terrible idea in the 80s, one that I believe ruined many aspiring female athletes’ self-esteem, as we were taller and better and sat on the bench anyway), how they were practically killing themselves over losing, how much anger and drive they had. And all I would think was, isn’t it something that I’m an 11 year old girl and I can make a half court shot? Isn’t it cool to shoot fifty free throws in a row and only miss five? Isn’t dribbling just fun? I had to admit I could do those things at home, and save the winning and losing for someone who cared.

The things I love about fitness are the same things I love as a sports spectator. I love football when I can see some guy ducking and sparring and running faster than anyone else. I was so pissed at Priest Holmes when he bulked up and couldn’t fly down the field anymore. I would root against my own team to watch him work that short, crazy body. During baseball season, I could watch the same replay of a triple over and over. I love to catch the balk before the ump does. I can’t stand professional basketball because everyone travels and everyone is freakishly tall and no one kills themselves flying into the bench to save a ball the way they do in college or high school.

I like to see bodies work, even on tv. So, after going out for a quick dinner last night, Gabe and I rented Footloose from the Redbox. He fell asleep about halfway through, but I actually watched the whole thing and found it surprisingly entertaining, except for the fact that the lead characters seemed CRAZY old to be in high school. I love to watch people who can dance, since I’m not good at it myself (living room antics disregarded). But then something weird happened. I found myself getting really emotional. Don’t laugh—remember, Ren’s mother is dead, done in by leukemia. I swear to God every movie over the last year has featured a dead mother, and cancer is usually the culprit. Also remember that I still have issues with teenagers, particularly teenage boys, because it’s hard for me to think I might not be there to see my kids reach that age. When Ren made the big speech about how one day, the teenagers would be like the adults in the room, full of worry, but now was their time to live, to dance and act like idiots, I thought damn.

I never grew up, did I?.

I have always worried, even as a child. That didn’t change with age or parenthood. I’ve always been pretty self-composed as well, able to fit into most situations, able to keep my cool most of the time. But I have also been almost selfish in my desire to still act like it’s my time. As I said, even while reveling in my kids’ joy over some activity that is new to them, I always think “me too.” This affects our family in substantive ways, this admittedly self-centered characteristic of mine. When we go to the lake house, I swim, and Gabe makes sand castles with the kids. I float and ignore everyone else. When I eat, it’s like there’s never been food before this meal. My interest in sex is in the pleasure, not the spiritual connection, though I get that too.

I don’t know what to make of this. I really don’t know what this says about me, but it doesn’t seem good. I don’t know that it can be helped either, not after so many years. Last night, after the movie ended, I was teary-eyed, a sensation I still hate and that feels alien to me, and I woke Gabe up and told him we should go to bed. It was 12:30 and I normally get up a little after 5. In bed I told him why I had been emotional, and I started crying again. I said I wanted to live to see the kids be teenagers. He said of course you will. I said, well, if not, I know they will still enjoy themselves. That made me cry more, and it made Gabe cry too. So we were crying and feeling sad and I wanted to feel better.

So that’s what we did, we made each other feel better, and then it was 2 in the morning, and I set the alarm for 6:30 because I knew I’d be unable to get up 3 hours later. Sometimes you just want to feel your body working, the closeness of another person’s body, the joy and wonder that is at the essence of your life. Sometimes it works, and life seems closer than death, your flesh seems more real than the dust of your bones. And for some people, it’s like that all the time, and our little restless bodies can’t stay still, or sleep, and we can’t remember when it wasn’t this way. It wasn’t cancer that brought me this, in fact it was cancer that tried to take this away, and succeeded for a time.

But I’m back. And Lenny found another jump rope in the house—one that’s just my size. I’m telling you, I’ve got this. Maybe someone should teach me how to double-dutch.

Day 585: Dear Abby

"Dear Abby:

I recently went through a traumatic event, and I find that I'm "numbing" myself, not through alcohol or drugs, but through things like housework, crosswords, and the Internet. My kids have noticed and I just tell them that mommy is distracted. What should I do?"

I read a letter very similar to this one in the paper this morning. It wasn't to Abby, since she is no longer living, and the details might be off a bit, but you get the gist. Of course, the response was to go to therapy to work through the grief of losing a loved one. Can I be an advice columnist? How hard is it to tell everyone and her mother to go to therapy? I would love to be the Abby who says, honey, just keep doing what you're doing. Crosswords? It doesn't get more innocuous! Be proud you're not in prison! You're doing fine, you are an excellent example of someone who needed a coping mechanism and found it! Anyway, I felt a great amount of empathy for this person, and a lightbulb went off in my head as I realized that I am, perhaps, doing the same thing. And I think my coping mechanisms, while flawed, seem to be getting the job done--most of the time.

Everyone reading this knows I'm not big on vice. We're getting better at it over here, spiking our hot cocoa with Bailey's, playing hooky from work once in a while, stuff like that. At a party the other night, one of our old neighbors said he was "proud" of us for having so many pudding shots. So we're not the wildest bunch, and yet, I do think that while I might not drown my sorrows or cheat on my husband or do anything truly "bad," I am, in fact, numbing myself these days. Perhaps I have always done that, to some extent. I'm always trying to get away from my own thoughts.

Gabe chastised me this morning for yelling at the kids while they were refusing to get ready for school. In that scenario, I don't actually feel bad about yelling. Augie was being absolutely impossible--IMPOSSIBLE. Sometimes, nothing else gets through to that kid. But in general, I think that even if he doesn't say it, Gabe feels that I need to be more nurturing with the kids. I don't think he would believe that if I spent more of what we call "quality time" with them. And I do spend that time--I have changed my schedule, quit doing certain sports etc., so I could be home for dinner and to put them to bed. But so much of the time, I am running around, cooking, cleaning, leaving the house to exercise, and while it relaxes me to some extent, I still feel restless much of the time, and I need to be alone, and I lose my patience with the kids and with Gabe.

I have always needed my solitude. Maybe it's that annoying selfish writer person in me. I need the house to myself, and if I can't have that, I need to leave. That's always been true. I need time to get away because my mind is always racing; I have so many thoughts and internal conversations happening at the same time, that being around other people--even my own family--can be overwhelming if I don't get a break. Post-cancer, this has just been more true. I've admitted to how I acted right after my diagnosis, when I couldn't be around anyone or talk to anyone, and I left the house for long stretches of time. I just haven't admitted that that behavior has never really left--it's eased up, I've learned to modify, but the instinct's still there.

I wish that I believed that therapy would help, if I am indeed numbing through manic amounts of activity. But here's the thing--I know exactly what my problem is. It helps to verbalize it, so I'm going to do that here. I had cancer, and cancer can come back at any time, if it's an aggressive form of cancer it can come back even if you caught it very early, and there's not much you can do about it. Oh, everyone wants you to think you can change this cancer thing that's entered your life. The new studies talk about eating right, never drinking, never smoking, not going on the pill or having CT scans. They talk about how important it is not to be obese, especially post-menopause. Thanks, but what does obesity after age 50 have to do with size 2, 34 year old Katy? Why don't these studies control for hormone receptor status? And why do I need to fall into a funk just by reading the paper, which tells me that every drink I ever had, every cigarette I bummed from college friends, every pill I took for 11 years that was supposed to PROTECT me from cancer, that period I had for the first time at 11, those babies I didn't have until I was 30, those CT scans I had for epilepsy--that this is why I had cancer, and hey, it's all my fault? And then, as long as I avoid all possible "bad" human behaviors, and as long as I have a kick-ass, happy-go-lucky attitude, cancer won't visit me again.

I think about all the breast cancer survivors I've met recently--so many of them younger, skinny, athletic women I've met at the gym, spinning, what have you. I think about the triple negative, BRCA-positive survivor I met at pilates who said that she hates how cancer has made her feel nervous, insecure and slightly depressed all the time. I think about the woman who was diagnosed two weeks after I was, who is 16 years older than me but still so young and fit and thin, who was on tamoxifen and just had to come off of it because it gave her two mini-strokes. She was talking about how she felt depressed about cancer and was taking anti-depressants, and how it was so far from her diagnosis that it caught her by surprise. I said to her: well, I'm sure those strokes didn't help your feelings of depression. These are the things breast cancer survivors laugh about while they're taking walks together. Oh some genius found out that young women who are single and young women who have children are more likely to be depressed if they've had breast cancer! I never would have guessed.

Here's my problem. I had breast cancer, an aggressive form of it, at a time in my life when I was completely unprepared for it, and every single one of my contemporaries was unprepared for it too, and unsure how to interact with me. The reality of my cancer is still there--the possibility of recurrence, but more than that, the very real fact of death. Yes, perhaps I will survive this beast. Perhaps not, though. And even if I do, death is still there, it's there for all of us, but it just recently slapped me pretty hard in the face. And the fact of my own very imminent death, and even that of my children, is what's behind this numbing, this need to be distracted all the time. Sometimes it's still hard for me to be around my kids, even when I'm happy and they're happy, because my love for them makes me feel weak, and scared, and I need to block those thoughts. To some extent, all new parents go through this, when that tiny helpless person makes you see the world the way it really is, and you think holy shit, what have I done. Now, I'm not a new parent--I'm just new to cancer, AND I'm a parent, and that makes things tough. It makes me wish there was some magic; I wish I could be like Lenny, who in the middle of her uber-smart, logical, mind, can think of a way that Santa is real, she can rationalize how he gets through all the time zones (geography NERD), how he knows everything about you, because she wants and needs so badly to believe it. I envy her.

Though this might alienate some readers, I am going to say that at times, I wish I was a religious person. Some people are not religious in the sense that they don't often go to church. I am not religious in the sense that I don't believe in God and I don't believe in an afterlife. For many years, I have thought it would be nice if I could change my mind, but I can't. Parenthood made me wish this somewhat desperately, as I would love to imagine a world, no mater how corporeal, without pain, where I could always see my kids again. But more than that, it is the other tenets of religion that I find alluring, especially post-cancer. In particular, I covet the forgiveness. That divine forgiveness! A pardon for all of these earthly trespasses, all of these flaws, all of these self-induced distractions. One of the reasons I don't believe in therapy in my case is that it seems such an exercise in selfishness, just one more thing to make me feel better, on top of all the other things I've already chosen to do: work out, carve out time for myself, cook, whatever. What I need is some way to know that these things I'm doing, which aren't terrible things, and aren't specific to me either, are forgivable, that my kids and even other people will someday understand why I've done what I've done. I need a big helping of given forgiveness, if you will.

We all have our damage. Gabe had a very rough childhood, and when he acts in certain ways, it's like I can see that written on his face, but he can't see it at all. It doesn't excuse bad behavior, but the knowledge of why people can behave imperfectly is a path to forgiveness of that behavior. My mom used to dust or clean obsessively, strip floors, "kill snakes" as we said. Her mother made jello. This was a family joke--talking about Marthagene making jello when she was nervous. What do I love about that story? I love that we all knew why she did it, what it meant, and that it was illogical, and even unhelpful. It was right there on the surface, so we could laugh about it, look past it--and forgive it. The same held true for killing snakes. I'm sorry if I need to keep chopping those snakes' heads off, I'm sorry I can't sit still, I'm sorry I have no patience. Perhaps I'm writing this, this whole damn thing for the last 585 days, because I knew how I would behave, and I knew my kids would be too young to understand, and my friends would not be around me enough to notice, and my husband would be too overwhelmed himself, and my family would worry about me and want me to see a specialist, so I started this project, this long letter asking for forgiveness.

I often relate funny tales from my dating days, from past loves or conquests or whatever you want to call them. There's a reason--I think the way we interact in our romantic lives says something deeper about us as people. So here's another one, one I might regret writing about, but oh well. When I was newly single, out of a 6+ year relationship that ended in a way that very much felt like a divorce, my mom actually tried to set me up with someone. I knew this was a bad, bad idea. Now that I'm a mom, I vow to never set up one of my kids. It's just BAD. Sorry, mom. Anyway, she was in grad school at the time, and was friends with a guy who was close to my age--he was 27 and I was 24, I think. He was also very religious, and, get this--he was a virgin.

Did I mention that this was a bad idea? Now I have nothing against virginity, but I also had no clue what that was all about, not at our age. When this guy, who was very good looking, funny, easy to talk to, and smart, came to my apartment to pick me up, he wouldn't come in the door. I invited him in, said I needed to get my coat (he was early), and he just stood there. It took me a minute to realize that he wouldn't come in because I lived alone, and he wouldn't be alone with me. I found that creepy on so many levels--because it implied that as soon as we were alone together we'd be attacking each other, and because it just made for an awkward interaction. But the date continued, and we had fun; we went to a movie after dinner--a horror movie, in fact. And I could go to the movies with my grandma, but I would still be slapping her thigh and talking about shit, and hell, this was a horror movie, and it was a date, so how could I help grabbing him when I was freaked out? I've been doing that since I was 12. He almost jumped out of his seat when I touched his leg though, and I think he was more afraid of me than the film. At the end of the day, we never went out again, which was definitely for the best.

Why am I telling this story? Here's why. As I said, he was extremely religious, and he was friends with my mom, a noted atheist. And, as I found out over time, he really liked me. I don't know if he liked me romantically, but he liked me, and he liked my mom especially. He thought we were good people. He told my mom that he believed we would go to heaven, and he prayed for us. She thanked him, and then asked how we would get into heaven if we didn't believe in God. He was raised to think that non-believers would go straight to hell. Did he feel that God would make an exception for us? No, he was much too steadfast in his beliefs for that. Instead, he told her that we were both very good people, that we both had big hearts, and that therefore, we really did believe in God, we just didn't know it. He had decided a way for us to be saved; he had spent time figuring it out, because it mattered to him that we wouldn't suffer for all eternity.

He was forgiving us. Us! These heathens! My mom, a divorced woman! Me, the apparent physical manifestation of all sin! I know that only divine forgiveness is truly divine to those who believe that and I know this is literally blasphemy to some, but that moment of human forgiveness was one that I will never forget, especially because it came from someone who seemed to feel that he would be brought straight into the depths of hell on earth if he spent more than three hours with me.

I guess that's what I'm asking for--for those who know me now, and for my kids who will read this one day, maybe when I'm still here, maybe not--to forgive me my trespasses, my distraction, my impatience. To believe what another man told me once, which is that I am not a sweet person, I am not even always a nice person, but that I was the only inherently good person he had ever known. I don't need to be the only one, but I do try to be one of those people. I always loved that line in the Natural, my all-time favorite movie: "He'd give his left arm to give Pop the pennant." I might sigh in an exasperated tone if you show up at my house uninvited, but I'd let you in; if I know you well enough, hell, I'd give you my left arm.

What use is it to me these days, anyway? I might as well give it away. As I've been coming up with new ways to try and distract myself, I've been thinking about doing some new kind of workout, some new sport. And I just had to stop myself. I realize that on the one hand, I need these things, this constant movement, to be sane, to sleep, to not be a bitch, to try to live longer. On the other, I have nothing left to prove, no desire to compete with myself and my body anymore. You see me, and you see a healthy, small, young woman. You don't see the wars that have taken place in this body, the fight to be able to walk, the fear that the next seizure I have will happen while I'm driving my entire family somewhere on the highway at 70 mph, the things that have been taken from me that I fought to get back. It's tiring.

This morning I was spinning, and it was hard because I've been sick with a terrible cold, but I've missed a few days and had trouble sleeping. The instructor asked me where I'd been (when I say a few, I mean I haven't gone since Friday) and I felt like Norm from Cheers. She said they felt the room had been lopsided without me in my usual place, and it made me feel emotional somehow, to be a "regular" somewhere; the same is true at the gym at work, where no one ever takes my place on the floor. Is this sick? I don't know, but I started to think about this numbness, and in the middle of the ride I had to get up and leave, to go to the bathroom, but also to cry. What the hell? What strange being has invaded me?

Oh, right--cancer. That's the rub. Someone said the other day during a discussion of working out, "why can't you do pullups? Lots of people have injuries! You can do it! You can learn to do anything!" Yes, that's true. And I have, I have learned how to do just about everything, including the things that other people never think about because they could do them all along. I get pissed at my body, frustrated at the pain in physical therapy, and then my unnatural response is to think about how can I do something more, something bigger, something difficult with my body. Then I have to slap myself and say no, what this is, this imperfect, scarred up, stretch-marked, half-gimpy, arthritic, 5'5", 116 pound, size 2, all legs, short-mop-haired self is, is a petite middle finger to the world just for still working.

I don't go to church. I don't go to therapy. I write this blog. If I act crazy, please forgive me. Perhaps one day I will forgive myself, cut myself a break. Perhaps not. Just know there was a method to the madness, and much madness to the method, but I meant well. Thanks, Abby.

Day 576: What You Don't Know Can Definitely Hurt You

Today's blog will be fairly short (for me), though not at all sweet. I think I'm going to use this opportunity as a PSA of sorts, one of my many "something is very wrong in the land of breast cancer" rants. I mentioned a few blogs ago that I had finally received a prescription for physical therapy, after having chronic pain, intense pulling sensations, muscle weakness and even tenderness to the touch in my chest and under my arm for a year and a half.

For some reason, the scrip said "range of motion and lymphedema" on it, which made my life somewhat difficult. I don't have lymphedema. I could get it at any time, but having that word on the order meant that the physical therapist I called initially wanted me to go to a lymphedema specialist for the evaluation. I had met this specialist at a ROW practice months ago, and I would have been happy to go to her (except it turns out she wasn't the best candidate for my specific problems after all), but her office is too far away. No matter, after the evaluation she said there was no reason I couldn't go to someone else--she wasn't concerned about lymphedema issues with me, apparently.

I learned that I still have range of motion issues with my left arm, but only about a 10% difference, which isn't significant. During the evaluation I was told that the tenderness I feel in my pec, and the muscle weakness, may very well be permanent. It has little to do with surgery and everything to do with radiation. That sucks, but it could be worse, I suppose. Some people get broken ribs, damaged hearts or lungs, or other severe damage from radiation. It's definitely no joke. The evaluating therapist said my biggest issue was likely scar tissue, which might be especially aggravating for me because I'm thin and small-breasted.

I'd like to take a minute for an aside here. I know I don't have big boobs, and I'm glad about that, actually. But when talking to breast cancer specialists, you'd think a B-cup is the tiniest thing they've ever seen. When I was growing up, B was the average size for women. Now it's C--everyone is either getting fatter, or everyone is getting implants, or something. It just annoys me to always hear this "oh well since you're so small, you will have this issue, and that one" etc. etc. Kudos to my acupuncturist who told me last year, "Katy, I see all kinds of people naked. You aren't that small." Amen!

OK that's out of my system. After the evaluation I signed up for 5 weekly sessions with a therapist near my office. She thought that would be enough. The first session was no problem. I warmed up on the "arm bike," which is just what it sounds like--you turn this wheel with your arms forwards, then backwards, for six minutes, which might as well be an eternity. It's not that it's hard, but your shoulders get fatigued, and it's BORING. Then I did a bunch of exercises on the foam roller. I can't tell you how much it hurts me--me! the one who can take a lot of pain, who does crazy amounts of exercise--simply to lie on that thing with my arms outstretched all the way. It's like someone is trying to rip my left arm off at the ligament. After some more stretching, she did some initial ART (active release technique--basically like extremely deep tissue massage--her specialty, and interestingly, NOT something the lymphedema specialist is certified in) work on me. This is the main portion of my therapy--trying to break up the scar tissue to alleviate my pain and help with range of motion. She was working on my pec, the muscle deep under my arm, and it hurt, but it was no big deal. After ten minutes of this I was done, given my daily homework for the week, and I went back to work.

Enter the second session this week. I got on the arm bike, but after that went straight into more than 30 minutes of ART. She said "now we're going to really start working on the scar tissue." I feel like crying just writing about it. I have had so much pain in my life, but damn. If I hadn't been lying down, that would have just brought me to my knees. She would use her fingers like a screwdriver, going deeper into my flesh and muscle than I thought possible, and then ask me to move my arm as far back as I could, or as far to the side, and hold it. It was absolutely excruciating. I was just gritting my teeth, holding on to the side of the table with the other arm, and she was very nice about the whole thing--offering me breaks, asking how I felt. Well my God, it hurts, I said. I know, she replied. I'm sorry. Well, I said, I've had worse pain. And that's true--but barely. I made her do the same thing on the right side a few times so I could feel the difference. It seems like it might just be the kind of thing that hurts, even if you're not injured. Wrong. It felt like an intense stretch, a strong pull, on the right side, but there was no pain.

So why was this killing me so much? In general, scar tissue hurts. Everyone knows that. I have a lot of it in my body, I suppose. I had gallbladder surgery, and organ removal leads to scar tissue, I'm sure. I have never noticed it. I had a lot of scar tissue that had built up after I first had a gangleon cyst operated on when I was 12; the cyst eventually came back, 20 years later, and the surgeon told me the amount of scar tissue was impressive--about as big as my whole wrist, even though the cyst was maybe an inch long. But here's where this breast cancer stuff gets just sick. My scar, as many of you know since I've posted pictures here, is on the side of my left breast, near the top. All of my tumors were located in that area of the breast, and taken together, they were about 3 centimeters in diameter. The surgeon used the same scar area when I had to go in for the re-excision. I can feel the scar tissue there, all lumpy and disturbing. That alone doesn't surprise me.

But get this--the therapist told me I have scar tissue all over the muscle that covers my rib cage and travels around to my back. When she was doing ART on the bottom of the side of my rib cage, almost half a foot away from my surgery site (you can see me pointing to the surgery site, compared to the farthest location of the scar tissue here), I asked her what she was doing. I'm still breaking up your scar tissue, she told me--you have it everywhere.


I was absolutely shocked. She started telling me how this muscle (the name is escaping me) is attached to the pec muscles, that every time I use my arm or my chest I would feel pain from the scar tissue. She said "no wonder you can't do pushups." Honey, are you kidding me? How have I been doing half the things I've done?

Now I know I'm not crazy when tears come to my eyes when Augie jumps onto my torso. Now I can give myself a break for not being able to do extended planks, chest flys, or pushups, for wanting to cry that day in ROW practice when we did the one-handed oar drill and I thought my chest was literally going to break.

So, obviously, I needed physical therapy. And boy does it piss me off that I had to wait so long to get it, that I had to ask a hundred times, that I had to practically make shit up ("It stops me from doing yard work" is a bullshit line, but effective) to get anyone to listen to me. I am not an idiot, nor a child. I understand that I don't have to do certain strength training exercises to live a happy, healthy life. But I also know that I used to be able to do things that now make me double over in pain. I used to be able to lift things over my head. I always preferred to sleep on my left side, and now I can't do it. The muscles affected by breast surgery are the same muscles that you use with literally every step you take in your life. A PT evaluation should be the standard of care. Some women wouldn't need it--fine. But I'm sure a majority would benefit from it, and some, like me, REALLY need it.

As I was trying to wince the torture away (I told someone that it hurt so badly it was like going through labor--through my chest wall), I asked the therapist what kind of patients she usually sees. Oh, not much post-surgery. Lots of tendonitis, people with back pain from having desk jobs. Huh? I asked. How do people get scrips for that? Don't we all have the same issues with sitting at a desk? Oh, they tell their doctors, and get the prescription. We see pregnant women who just want some back work, people with mild carpal tunnel; I see it all the time.

Well excuse me if all I ever had was CANCER and I was crazy enough to think that warranted some assistance. These surgeons and oncologists have to start looking beyond whether or not you're still breathing, stop focusing on how close you are to death's door, and get a clue. If you want me to believe you when you say you think I have a good chance to live a normal lifespan (good--not great), then think about this: I could be dealing with this shit for 50 years. I have the right to be able to function normally without intense amounts of pain that I guess I have just accepted, just folded into my daily life.

What a bunch of crap! Anyway, I just wanted to put this out there in case any women who have had breast surgery, or are facing it, come across it and read it. I think it would be worth it to get a pre-surgery evaluation, so you understand your range of motion beforehand. And if you think you have an issue, just push it--no one else cares as much about you as you do, and no one else will advocate for you. Your problem might be even more severe than you realize--you could have scar tissue adhered to the muscle and bone of half your torso, apparently, and be walking around like it was nothing. You get to bitch about this, because you had cancer, and in many situations you get to do what you want, because many things that you wanted to do were taken from you, so whatever's left is yours to claim. You can even put pictures of yourself online wearing footie pajamas. Why not? Who's going to say anything? If anyone tries to give you shit, realize that there's a lot of shit you've already taken. Enough's enough!

Day 477: Post-Cancer Exercise Modifications (And Other Life Lessons, Because I Can)

Now that I’m more than a year “cancer-free,” I often find myself questioning the purpose of this blog. Is it to leave my children a reminder of who their mother was if this shit comes back to haunt me and I don’t make it? Is it a platform for ranting? Is it just an excuse for me to write somewhat creatively every once in a while? Is it to tell something of my absurd little story so that some other young woman going through similar things doesn’t have to search the internet in vain for advice?

On the off-chance that the answer is anything approaching the latter, I’ve decided to do my own completely un-scientific, not based on any knowledge of sports medicine, list of modifications for working out during and after breast cancer treatment. You are supposed to stay active to save your life, lower the risk of recurrence, etc. etc. For those of us who were extremely active BEFORE finding out we had breast cancer, we might be somewhat skeptical of this. This doesn’t mean we won’t continue to exercise, even manically, under the assumption that we are doing what we can with what we’ve got to fight something no one really understands. It just means we wonder sometimes.

Before I got pregnant with Augie, and hell, during most of the pregnancy itself, I exercised for about three hours most days. That was partly because I was annoyed at how hard it was to lose weight after Lenny was born (out of whack hormones, related to breast cancer, perhaps?), and it was partly because I was frustrated at being unable to get pregnant for a while (again, with the hormone imbalance). I figured, if I’m not going to get pregnant, I’m going to get skinny, damnit. But mostly it was because I learned years ago that if I don’t get a lot of exercise, I can’t sleep. And when you are a chronic insomniac because your body is begging you to move move move! all the time, it gets tiring, literally and figuratively. Exercising compulsively is good for me; hell, it probably saved my marriage. When people remark on how Gabe must be really understanding because I get up super early all the time to work out and he is in charge of getting the kids up, I think on the one hand, well, they’re his kids too, and on the other I think, you have no idea. If I go early enough, the entire family hardly knows I'm gone. Besides, Gabe is all about me exercising. If I get four or five hours of sleep a night, I’m actually fun to be around. He’s my biggest workout supporter.

So I exercised like a nut for years and got breast cancer anyway. I don’t know that exercise will do anything to save me from cancer, but it doesn’t matter, because I like to do it anyway. Besides, I have a lot of very small clothes in my closets (yes, I use up a lot of the closet real estate in our house) and I don’t want to get new ones. Anyway, I continued to exercise to the extent that I could after two surgeries, and during and after chemo and radiation. I started new routines, took up new activities. My co-workers who saw me waddling into the gym 8 months pregnant saw me slowly walking into the gym when I was straight-up bald and going through chemo fatigue just a little over a year later.

Though I kept at it, I got frustrated by what I couldn’t do, and truth be told I am still frustrated. My left pec still hurts, making chest exercises difficult. My breast hurts as well, 14 months post-surgeries. I have an insane amount of scar tissue, and today I left the gym early because my boob was just killing me beneath the scar and I didn’t think it would be advisable to sit there holding myself in pain in the co-ed class. Mostly, I still have issues with the extension of my left arm. I can extend it all the way above my head when my hand is empty. However, I cannot easily bear weight on that arm when it’s extended, either with free weights or the weight of my own body. Doing this leads to chronic and sometimes scary pain in my pec, breast, and arm. I’m half-convinced that overdoing it with my arm and chest is part of what led to that awful mastitis I had over the winter, though the docs all said that's not true.

So I’ve learned a few things through trial and error, and though those things are specific to me, I’ve decided to share in case anyone finds them useful. I will insert a caveat though: If you have had breast cancer and you try these things and you injure yourself, don’t blame me. I’m a business economist, not a personal trainer, so listening to me is probably not that advisable. I’m just a really opinionated business economist, so here goes Katy’s list of “if you have breast cancer and would like to exercise, but you can’t do this, do this other thing instead:”

Can’t do:

1. Push-ups. Do planks instead. You might be weaker in the chest, but somewhere underneath it all you will get a core of steel. (I like to eat, so there won’t be any 6-pack on this body anytime soon, but I know those muscles under there are strong!) I have accepted that I might never be able to do push-ups. This is ok—it’s not a necessary condition for a happy life, after all. The main issue in a classroom setting is to not distract anyone else by standing or lying on your back, bringing attention to the fact that you are being a smart-ass and not doing push-ups. So plank it as long as you can hold it.

2. Overhead tricep extensions: Easiest modification of them all: just do kickbacks instead. Same benefit, much less pain.

3. Lat pull-downs: do these straight in front of your chest rather than with arms overhead. This works different muscles, but it still works. You are not sitting there with your sorry ass on the couch, so go ahead. Today the gym intern made a general comment, knowingly directed at me, while we were doing this: “Make sure your arms are ALL THE WAY OVER YOUR HEAD.” The gym manager glanced over at me quickly. I gave her a reassuring look. No need to bring breast cancer into this 22 year old girl’s state of consciousness; I can take the criticism in stride. Now in general, I have finally graduated to being able to do normal lat pull-downs overhead, but I have to use smaller weights or a tube with less resistance. Today my breast hurt, so I just modified and held my arms straight out. Follow your instincts.

4. Squats/lunges with weights for strength: When I first told my gym instructor that I had cancer, she said she would work with me on modifications. She said, some things you won’t be able to do, but other things you’ll always be able to do, like lunges. This is true. Breast cancer does not affect your legs (unless chemo makes you too weak or gives you extreme neuropathy or spreads to the bone, of course). My issue was that I always held two 10 pound weights for extra strength. Post-breast cancer, until very recently, I could not hold the weight straight down at my left side without hurting my arm. So I used ten pounds on the right, five on the left for a while, and totally destroyed my back due to the imbalance. Then, for months I used a lighter (12 pound) medicine ball instead, holding it right out by my belly so my arms were bent. That way I got the benefit of the weight-bearing exercise but I didn’t wreck my arm. I have recently graduated to using weights again, albeit 8-pounders.

5. Rows: Here the modification depends on your injury. If my general chest/breast issue was the problem, I would just do something else entirely, like crunches. If my chest was feeling ok but the arm was giving me trouble, I’d do the row, but with less weight/resistance, and alternate. Today I can usually do them normally.

6. Chest-flys: This is just not advisable soon after surgery. Your breast will feel like it’s on fire. It ain’t worth it. If your class is doing this while lying on the ground or a ball, do regular chest presses but with lighter weights than usual. If that still hurts, sit on the ball, or kneel on the ground (again, try to be less distracting to folks) and do hammer curls instead. I always default to planks or bicep exercises when I can’t do something else. All is not lost; you will at least have those Michelle Obama arms going on. (Here’s a shout out to my husband, one of the few men in America who really likes and cares about women’s arms. I live with comments like “Damn your arms are looking hot baby!” Is this normal?)

7. Side planks: Again, not very advisable on the affected side. If you’re up to it, do the plank on that side on your forearm (I always do side planks on my forearms, not extended arms—these are really hard for me on either side, cancer or no) but rest your weight on your knees rather than extending your legs out and up. You will still work your obliques. If that doesn’t work, do a regular plank.

8. V-ups: Don’t do it. This is just kind of unnecessary if you ask me.

9. Shoulder raises: do these exercises—I think it actually really helps with range of motion after lymph nodes are removed. Just use tiny weights if it’s close to post-surgery. Or don’t use any weights at all—the motion of moving your arms straight ahead or straight to the sides is good for you. If anyone looks at you weird because you’re doing a side raise with invisible weights, just give them that death stare with your big eyes that look scary underneath that bald head. That’s what I did, and believe me, it works.

10. Dead lifts: This seems obvious, but if it hurts your affected arm too much to hold your arms "dead," just bend at the elbows and hold the weight by your chest. You will still work your hamstrings and stabilizers.

11. General weight-bearing exercises or arm exercises: If your arm bugs you, use less weight. This is common sense; don’t do what I did and use the same, higher weight on the “good” side because you think you have something to prove. You will get strong muscles on that side and then your back and shoulders will kill you. So use less on both sides. This is not a contest.

12. Running: I have no advice here. I hate running. I even had trouble walking right after surgery because any motion or bounce was excruciating in my breast, though I’m small-breasted. I still took long walks every day, however, and suffered through it. Sometimes that’s the best advice, I suppose. Just suffer. It won’t last forever, probably, or at least theoretically.

13. Swimming: don’t listen to me, listen to your doctor and his or her advice on getting wounds wet, contracting germs, etc. I stopped swimming and doing water aerobics during the latter half of chemo and for all of radiation (it was forbidden during radiation). And no, I didn’t get fat.

14. Pilates or yoga: do these, especially during chemo and radiation. Now those who know me know I hate yoga. I need to be doing something faster or else I get bored, so I did pilates several times a week during treatment. The point is, your joints will hurt at different points during chemo, and your skin will feel tight and painful during radiation. You will be crazy tired, not tired even—fatigued in a way you didn’t know was possible. The overall body work and stretching with pilates and yoga will help. Trust me. If you need to bow out of certain exercises or poses, do it. Just pick a studio or class where people aren’t judgmental jerks and you’ll be fine.

15. Lifting heavy things: don’t be an idiot. If the heavy thing is not your child about to be hit by a bus, it probably doesn’t need to be lifted by you while you’re still recovering. Not today, maybe not ever. Just flirt with some guy and he’ll do it for you.

16. Getting out of bed: hey, if you can’t do it, you can’t do it. Your muscles won’t atrophy in a day. Let your husband/mom/neighbor/friend/cousin take care of the kids or the chores, and get up tomorrow, or later tonight. Watch some stupid shit on tv. You have cancer. You don’t have to follow the normal rules.

Wow, it felt kind of good to get all that down. This makes me think that I should write down some other general-life breast cancer modifications:

• Underwire bras: Just chuck them. I was the lingerie queen, the girl who wore matching lace bras and panties when I was 14. Breast cancer put the kabosh on all that. Wear soft-cup bras, or nursing bras even. Don’t wear one at all if you don’t have to, but I would say that the more your boob hurts, the more support and compression you actually need, even if it sounds illogical. I know this bra advice doesn’t work for women with mastectomies. Sorry—I didn’t have one, so I have no clue and won’t pretend that I do. My boobs are basically the same size and shape, which makes me think that the large amount of tissue that was removed on the left was just replaced by scar tissue and firmness from radiation. So I can wear cute bras now, but no underwire.

• Food and nutrition: When the kind nutrition specialist meets with you during chemo, listen politely and then laugh when she walks out the door. When all of your well-meaning friends tell you what you should eat to maintain energy, smile and nod. Your job is to eat whatever the hell you can so that your weight doesn’t get too low and your body can safely absorb the poison. If that means you eat only pudding, or you eat weird things like Frosted Flakes and fresh spinach (my chemo dinner of champions), so be it. When I got down to 110 pounds after my first round of chemo, from 117, and everyone worried about me, I listened to them tell me I needed to ingest more calories, that I needed to eat more than fruit and rice. I secretly thought, screw you. I have CANCER. I’m doing CHEMO. I’m not going to starve to death; eating is the least of my problems. I will eat what I can stomach and worry about the right diet later. Your body helps you with this process. I actually craved goat cheese and spinach all the time on chemo. These things are mild and have protein and if you eat them, you will be fine. Your body isn’t stupid. Whenever I complain about the little pooch I have on my stomach, Gabe first scoffs and asks what the hell I’m talking about. Then he says women are supposed to have some softness, that’s supposed to be there, if you have nothing what would protect you from famine? (Can you tell this line of argument comes from a guy who was often hungry as a kid?) At 110 pounds, I went back to that thought. I said well shit, here it is. This is my chemo famine. My body will protect me. And it did. I got weaker, but not too weak. I made it through.

• Sex: do this as often as you want, as vigorously as you can, if and when you are able. If you are in the nadir portion of chemo, you might want to abstain for a few days, lest you get motion sickness from the act itself (don’t laugh, ya’ll know that happened to me). If you go through early menopause due to chemo or surgery, use silicone-based lube. All the other stuff just doesn’t compare, and no one will tell you this. If you don’t have an understanding partner, dump him or her. It is that person’s job to modify and figure out what works for you so you can enjoy sex again. If you are lucky like me and you completely come out of menopause to be a woman with monthly (if irregular) cycles and a surprisingly high sex drive, say hallelujah and have fun! When doctors and friends tell you that sexual problems are the least of your concerns, that at least your husband still wants you, or some other bullshit, realize that at that moment in time, those people are assholes. Maybe not all the time, but right then, they just suck. It’s important—don’t let anyone tell you otherwise. Nothing—not having cancer, not weaning my son, not being bald, not mentally preparing my own memorial service—made me feel as old and depressed as the sexual changes I went through from chemo-induced menopause. The fact that I came out of it is something that I revel in every day, or at least every other day, depending on how tired Gabe and I are that week.

• Parenting: don’t try to be superwoman, or the parent who protects her child from all things cancer-related, or the one who is saintly in the face of tragedy. Don’t be a martyr. No matter what you do, you will never protect your kids from knowing you have cancer, or from knowing that cancer is very very bad. So just be the parent you were before, to the extent that it’s possible. If you didn’t do crafts with your kids before cancer, by God don’t start doing them now. Your kids will really think you’re dying (at least that’s what mine would think). Modify your expectations of yourself and what you can do as a parent on a daily, or even momentary, basis. I received so much conflicting advice about what to tell Lenny; no one could have suggested that I just tell her the whole thing, kit and caboodle, in the middle of dinner, starting with, are you wondering why the phone is always ringing? No one could have predicted our collective relief when it was out in the open. Similarly, no one could have prepared me for the moment when my hand was shaking too much to feed Augie his lunch last July. I was utterly shocked that I couldn’t do it. But shit, the child needed to eat. So I put my elbow on the highchair tray, steadied that arm with the other hand, and fed him. He’s a crazy little bruiser now, so no harm, no foul. All I'm saying is, if luck is in your corner you will live a while after this, at which point all the other things are but minor considerations that your kids will one day forgive.

• Moods: Do not expect to keep everything together all the time. Cancer taught me to carry Kleenex in my purse. If my body wasn’t too bone-dry on chemo to physically cry, I just wept all the time, for months. It was like an alien being had invaded my stoic little body. This might manifest differently for you. You might feel angry, or hollow, or manic, or terrified, and all these things might come out of nowhere. Don’t begrudge yourself this new aspect of your personality. The rest is still in there, but you just got buried under some massive bullshit and you need some different tools to find your way out. So again, cut yourself some slack.

• Hair: Let it go. Literally. Being bald isn’t that bad. If you do decide to wear a wig or a scarf, make it a point to learn to study your face. You will see it with more clarity when there’s no hair to distract you.

• Friends: keep some. It’s important. Maybe they’re old friends you haven’t seen in years, maybe there are only a few you can really count on when the shit hits the fan, maybe there’s only one person who still treats you the same. It doesn’t matter, just keep those folks close.

• Ridiculously insensitive or just plain weird comments: Let them slide. People are clueless in general. When it comes to something like cancer, especially if a young person has cancer, the whole of the world seems to take leave of its senses. You must modify your reactions to these people, mostly by acting as if they are not even there. “Hell no, you’re bald!” “All of my aunts died from breast cancer.” “Your head isn't shaped funny, at least.” “You look great! I wish I could lose weight that fast!” “You have breast cancer? Your boobs look nice. And symmetrical.” “Oh. That must run in your family.” I mean seriously. If you have to physically shut your own mouth to stop that witty reply from coming out, do it. Unless that reply is my personal favorite, in which case I give you permission to respond to a compliment on your looks with “Thanks, but I don’t have cancer of the face.” It’s great to still feel beautiful while going through this crap, but as the last picture here attests (taken a few days after my first surgery), breast cancer is one hell of an ugly disease.

And finally, don’t modify too much. You have cancer, or you are recovering from cancer and its treatment. You’re not dead, not yet, at least. Keep exercising, eating, sleeping, hanging out with your kids, talking, having sex, working, bitching in cyberspace, all to the extent that you can for as long as you can. If nothing else, you’ll get some of that weight of the world off of your chest. Even if said chest is bruised, or scarred, or burned, or tattooed, or lopsided, you can get some of that weight off just by being yourself. That’s why I’m glad I’m not a Pollyannish, sunshiny, cheerleader type now that I’m supposedly recovered from cancer. If that were the case, cancer would’ve won. People would say, where in the world is Katy Jacob? Right here, son. Now shut up and stop asking me questions!