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 156: Starting the New Normal

For the last few days, I've felt almost normal. I even forgot to take my beta blocker yesterday, to no apparent ill effect. I've been taking allergy medicine for the reaction I was having to taxol, including this mysterious rash on my ankles and feet that I was at first convinced was bedbugs. (I thought maybe bedbugs were like mosquitoes and they all just flocked to me, ignoring everyone else, including Gabe, but I'm told that's not the case.) Everything seems to have subsided. So while I'm tired, I am starting to understand what everyone is talking about when they mention the new normal.

Because it isn't like it used to be. We went out last night, and I saw Gabe sing karaoke for the first time in the 7.5 years we've been together. He was careful to pick very cheerful songs, including You make me feel so young. There was a guy at this place celebrating his birthday and he was singing Only the good die young. Gabe loves Billy Joel (not my favorite, I'll admit) so I said, that guy did it first! Gabe noted that it would be a party foul for him to sing that song.

Oh, right. True. We wouldn't have thought of that before all this started. I also ate a lot of pizza, way more than I've been able to eat for a long time, and I said something about eating too much, or worrying about gaining weight. Gabe said he wanted me to weigh 120 pounds again. Why, am I too skinny? Well, what did you weigh before May? Maybe around 119, 120. I guess that even though my weight loss is unrelated to cancer, below 120 is like my BC size. My size-2-ness must remind him that I'm different than I used to be, and "used to be" does not mean the things for us that it means for other couples. You know, some people say, how we used to be, and they mean, when we were dating, before we had kids, when we first met, when we lived in separate apartments, before we slept together, when we were young. For us, it means, before I had cancer, before my body became an enemy on top of all the other things that my body used to be.

Everything is a reminder, even when it seems like everything should be the same. I'm still bald in all the pictures, though my head is fuzzy now with translucent hair, and I need to shave my legs again. My left eyebrow is pretty much toast, but I've learned to use the eyebrow shadow from the cancer shop. Sometimes I stop and wonder why my boob is hurting. Oh, right, those surgeries. The ones that took out the CANCER. I remember when it was just a time of the month problem, which of course I don't have now, having lost my time of the month to chemo.

Sometimes the nerve pain in my arm returns, usually while doing something like driving. (Talk about normal--I drove to Indiana and back today, and had energy and could see normally and everything! and I still hate Indiana drivers!). And I do things like pick up both my kids, carry a bunch of apples or a pumpkin, push a stroller filled with groceries and babies, and I remember: I'm not supposed to do these things.

They used to tell women who had breast cancer that they could never lift more than 15 pounds for the rest of their lives. Even today, I have been told by some doctors to not even lift my purse on the left side. I am supposed to wear gloves to wash dishes, always put sunscreen on the left arm, favor it when exercising. All to avoid lymphedema, a swelling of the arm that could happen at any time when your lymph nodes are removed.

I hear these things and I just think, yeah right. 15 pounds? My son weighs 25. I'm right handed, so of course I pick him up on the left side. I walked Lenny to school yesterday and she fell, skinning her knee, so I had to pick her up and carry her the last block. She weighs 29 pounds. There are lots of dishes in this house. It's October, and the sunscreen has been put away except for the stuff I put on my face and my head. I'm supposed to lift weights and exercise in order to help stop the chance of a recurrence. But what, only on the right side? Just to look extra lopsided, or what?

I do these things anyway, with some measure of caution, since if I am going to live a while, which is fairly possible I suppose, I have to actually live. I've learned that lesson before--reminders are just that. If your liver is enlarged, you remember not to drink a lot. If bright lights hurt your eyes, you remember not to look into them to avoid having seizures. You don't know how to play video games, you don't dance at places with strobes. When it rains, your hips hurt. Your kids come out early because your body knows better than to try to deliver them at term.

So it is with this. People in crowds look at me and I remember I'm bald. That one's on me, I know. I wore my hair and a a hat to an event at Lenny's school the other day. We met a couple there; they have a daughter in Lenny's school and another one at Augie's daycare. I saw the dad the next day at Lenny's school and he didn't recognize me. I said hello, he looked at me strangely and I realized I just had a scarf on my head. Today, we made it apple picking, though we were too late in the season to pick our own apples. At one point an older man came up to me and asked how I was doing. When I said I was fine, I knew what was coming. Are you a survivor? Yes, I am. He started telling me that his wife just lost her hair for the second time, right after she was able to make her first appointment with the hairdresser. He said her lung cancer had metastisized to her brain and she had six tumors. She never complained, they never talked about it much at all. I said well, I sure have complained about chemo. He laughed--I guess it's no fun for her either; she sits in bed a lot eating cheetos because that's all she can tolerate.

There's one picture of cancer. A woman sitting silently in bed eating junk so she won't vomit, not talking to her husband, who clearly needs to talk to someone or he wouldn't be randomly accosting bald women in the apple orchard. And he said she was so disappointed--about her hair, she was so happy to have it back. I thought, she just couldn't tell you that it wasn't disappointment, it was terror, and it wasn't about her hair, it was about those brain tumors. I wanted to say, this is the last thing I need to hear right now, but I knew he needed to tell me, just like the owner of our favorite restaurant told us a long story last weekend about how he understood what I was going through because he had a scare with stomach cancer.

But a scare is not cancer, and your hair is not your brain, and looking and feeling somewhat normal is not the same as how it was back on May 3, back when I was a different Katy that people could relate to more easily. And maybe that's what I need to do--be more like that Katy, less focused on what's happening in this body of mine. Maybe, but maybe not. Perhaps being stoic saves some of those around you from the pain, but it doesn't seem that it helps those who are the very closest to you at all. Because then they need to be stoic too. And I am not married to a stoic man, and my kids aren't stoic either. I'm sure there are a lot of people who would rather not know the things they learn here in this blog, or who would rather see me with a wig on, or who are more likely to want to talk to me in January. In the meantime I think about these reminders, and I feel like I'm almost on the other end of cancer treatment, the part where I try and go about my business, my non-cancer business.

For now, I'm all cancer, all the time. At least in theory. I'm not working anymore. I've started the three week leave I need to take to qualify for short term disability. Once that's over, I might go back to work sporadically, or I might not go back at all until I'm done with radiation. I just don't know--I'm tired. I worked a mostly normal schedule for five months after diagnosis, while trying and often failing to take care of two little kids. For some women, work is a distraction from cancer. For me, I have two little distractions at home, and work--while it helped to feel productive, get out of the house, and take the train and interact with other adults--took me away from them quite a bit. Once my WBCs tanked and then I was in the hospital for my heart, I thought, what the hell am I doing? I need to be home and just get through this. Get it over with, plan some holidays, do some yard work, go to acupuncture without risking my life in cabs every time.

Ah, acupuncture, how I love thee. It hasn't helped much with these hot flashes, but I'll give it some time. And I've had a few massages as well, since taxol does such a horrible number on your bones and joints. The first time I went it was a strange experience. I've had many massages before, and I've had them from this same masseuse several times. This time I was so floored by the feeling of her hands on my back, my toes, my bald head, my tailbone, legs, my neck. I thought, this feels so good! Someone touching me in a healing type of way, without sadness, without fear, when for an hour my body could be a friend again, rather than an enemy. It's interesting how you are touched less with cancer. Fewer hugs from friends, more distance. I'm not the most affectionate person anyway, but again, it's a reminder. And Gabe and I have been torn from each other in some ways--sleeping apart, him taking care of me, me staying somewhere else when people are sick. I told him once that I thought he was much less affectionate since I got cancer (I never say since I've been sick--I don't feel sick. I feel like a person with cancer), or more specifically since I started chemo. It's because I'm bald, right? Because I'm unattractive now. He has convinced me to some extent that this isn't true, that he likes how I look bald and the rest of me looks the same (really? that slight dent in my breast, those scars?) but that he didn't want to bother me, to annoy me, or make me sick if he was sick.

I have never liked to be bothered. That's what's funny about the massages. I always hated back rubs. My mom and brother used to rub each others' backs and I would try it only to feel like I was crawling out of my skin. And boys, or men, would try to rub my back but as everyone knows, only for ulterior reasons and it always seemed to me like a waste of time when you could just get to the point. I like to spoon, until I am sleeping, then I want to be left alone. But I do love a massage, and even more so now, when I am alone so much more of the time. It's like prostitution in a way, isn't it? You don't have to give anything in return, nothing but money.

Maybe I won't be a new-ager after all, not with those types of comparisons. I'm laughing right now, thinking about the time when I went to chemo by myself, and there was a woman there who was sitting on the floor in the waiting room, bowed over like she was praying. Her husband was sitting on the couch with their bags, and a volunteer came over and asked if she was just meditating or if she needed medical assistance. She got up and said, I'm fine, I just don't believe in chairs.

I was hiding my face behind my People at that one, trying not to laugh. But then she was called back for her bloodwork and her husband came with her and I realized what was happening and I felt a pang in my heart instead. This was her first time. If it hadn't been, she wouldn't have brought him back for the blood draw. They came back a few minutes later and she sat on the floor again, head down. I felt for her, and wanted to say something about how it would be ok, but how would that sound coming from me, with all my chemo issues? She looked up at me and I was about to ask her if it was her first chemo (of course it was, she had a full head of hair), but then she looked down. I realize now I was like the guy in the orchard to her. A portent of bad things to come. Bald, by myself, reading trashy magazines, resigned to the routine. So I didn't say a thing. If it helps to believe in the floor, believe in it then. Do what you need to do.

The chemo nurse told me to bring my party shoes on October 18. I've been putting a lot of thought into that actually. There are deep cancer moments, moments of fear and faith and resignation. And there are those moments where I wonder if I should wear heels or cowboy boots, red or purple or brown, if my party shoes should be comfortable or impractical for that last chemo. After all, some people don't believe in chairs, I don't believe in ugly shoes. Until that day, and for many after that when I am doing radiation and everything else, I will continue my massages, and my acupuncture, and my allergy medications. I will keep up with my blog writing, pizza eating, laughing, bitching, lovemaking, sleeping, crying, hot flashing, and whatever else I'm still good at doing. And then, nine days from now, if all goes as planned, will be the last time I will need to go in that room and sit up straight in that chair in the waiting room and go through all the rest of it. I have to tell myself that, that it's almost over, that it won't come back. It goes through my head in a continuous loop. One more, one more, one more. Only one.

Day 92: Random ramblings

So I am officially 3/4 of the way through with a/c. On the one hand, that means I'm almost done with it, but on the other, I have to do it one more time. Ugh. I couldn't sleep well for the last few nights before this treatment. It is so awful to think about putting yourself through that; I try and try to keep it out of my mind, this thing that I'm doing to myself. But then new realizations kick in. Chicago's been so hot this summer, and while I know it's normal to feel dehydrated on chemo, I've been wondering why I get headaches etc. in the heat. I'm not having hot flashes yet, so that's not it. No--I have lost the ability to sweat. Like a newborn baby--no sweat, no tears, no hair. What the hell kind of shit is that?

Chemo yesterday started out a little annoying. I have been lucky to have my own private room with a tv for the last two treatments. This time, there was no room at the inn, and they put me in the communal infusion area with several other women. Gabe and I were joined by a friend from New York, so my nurse found a room for us so we wouldn't be too cramped. And then I got some relatively good news. My numbers--white blood cells, hemoglobin, etc. were all fine and even better than last time. I think that's one of the things that made me most nervous before chemo--if my numbers don't stay up, they will put off my treatment, and my magic day of October 13 will be put off as well. I really, really intend to be done with cancer treatment by Christmas. It's also scary to think that you could feel fine, and go in and find out that there's something going on in your body that's just not right--these numbers are indicative of very important things. It's akin to the original cancer diagnosis--you're walking around feeling fine, and then someone tells you, sorry, not really.

But this time all systems were go. It took the nurse a little coaxing of my veins to get the iv in, but then she did it fairly effortlessly. Three down, still no port! Taxol will be harder-it's a much longer infusion. The nurse was scaring me by saying that taxol is more likely to make me lose my eyebrows and eyelashes. I'm lucky (always lucky!) I guess to still have those--I even have some arm and leg hair, and some little bits of hair in other parts of my body. I'm not looking forward to losing it all--I'm not a baby, I'm a woman, damnit!

I've gotten used to the shiny bald head, in a way, and I think one reason it works is that I still have eyebrows. However, I do get rude comments--today I went for a walk and a teenage boy on a bike laughed and pointed at me, shouting "hell no!" Lots of people stare, but I have realized something that surprises me. I don't really care. Chicago is a big city. There are lots of people and things to look at that are more disturbing or interesting than me. If people do look, it is unlikely that I will ever see them again anyway. And oddly, it's not that much different than having people look at me for my red hair. It's also led to other off-hand compliments, like that I have flawless skin (it helps to have no oil in your body), or that I have nice ears. I remember years ago I went on a blind date and I guy told me I had nice ears. That seemed so weird. Now, it's like a daily remark.

Does my relatively easy transition into being a bald woman make me grateful? Hell no. I really wish I still had my hair. But you have to find the tolerable in the intolerable I guess. Like today--I had a little bit of appetite, and I even ate some chicken and a biscuit for dinner and it's still in me. The weekend will be the true test--once the miracle Emend pill is over tomorrow, the nausea might really kick in, along with the weakness and fatigue. But if it's not as bad as last time, and if I don't have that horrible stomach pain or get down to 110 again, I think I'm going to give acupuncture the credit. That, and the cheeseburger and shepherds pie I ate in the few days before chemo, which might have given me enough iron to sustain me. Either way I'm going to do weekly acupuncture to get me through this a/c. It's worth a shot.

On another subject, I have been thinking a lot lately about how or why I am handling this cancer situation in my own way. It brings me to something that happened in the radiation oncologist's office. This doctor looked about 20 years old and was very serious. But since I'm at a big research hospital, he was still trailed by two groupies/residents. One was a woman who asked me lots of questions. The guy just seemed bored, or nervous, or something. It was a little uncomfortable. I had to have a breast exam from my doc and the female resident. Just take off your gown, lift your arms up, lie down, do this, etc. This seems like the 87th breast exam I've had since May 4. I might as well show my boobs to the whole world at this point. As I was getting the second exam, Gabe asked me if I felt like a lab rat. Without hesitating I said, sure, but I've always felt that way.

That explains a lot of it I guess. I have memories of that CT scan at 6 years old, doctors not listening to me, disregarding my feelings. I started to learn this lesson then, about being my own advocate. I've written here about my experiences with epilepsy and being in a wheelchair as a child. One thing that I don't think I've ever written about or even told many people about was something that happened when I had the toxic reaction to my epilepsy medication when I was 8.

My neurologist refused to believe that's what was happening, so he put me through a bunch of guinea pig tests for a week. At one point I was in a big room, separated from other patients by only a curtain. Two women, probably in their fifties, were having the same procedure as me. What was it? A barium enema. You can imagine what that was like--I'm sure, thinking of it now, that they didn't really give me a child's dose. Anyway I could hear these women screaming in agony as they went through this, so I knew what was coming. It was, I think I can say, the most painful thing I've ever gone through. Worse than labor, though not nearly as long. And I didn't say a word. I just cried silently. Worse still, I learned that the procedure that tortured me was totally unnecessary, brought on by the doctor's ego in refusing to admit what the ER doctor figured out in 5 minutes. It was for nothing. So my pissed off nature at chemo in part goes back to that, among other things. We had better not be doing this for nothing.

Those experiences also colored my opinions of doctors as a whole. Even though that neurologist was a man, you will never hear me say that women doctors are better, or that they understand me better. I have had great doctors of both genders, and terrible ones as well. I've had female doctors who thought they could relate to me just for being female, and it's never really worked out. I had a wonderful male pediatrician, and a great female doctor in my teens. My current ob is very eccentric, always calling me sweetheart and punching Gabe in the arm, very gruff. But I have never once talked to a nurse on the phone in the entire time I've had him, through two pregnancies, cancer, etc. He has always listened to me, even to tell me that I'm nuts. He still answered the question, found another specialist, gave me the damn breast ultrasound order, etc.

What I want in a doctor is humanity. I prefer eccentricity actually. Just let me know there's a human being in there, so you can see that I'm human too, and I'm NOT a lab rat. For some people going through cancer, this is all new to them. I do feel like I'm in a somewhat better place, not being blindsided by some of the insanity in the medical field. Of course, I wish I had never learned any of these things when I was so little, but perhaps they have now served their purpose.

In addition to the medical lessons I learned from what I went through as a kid, I also learned how to handle being different in a situation that surprised people: the neurologist who always seemed surprised that I was cute, or bright; the other kids who said things like, I heard epileptics are retarded, to which I responded, but I'm in your class so....; the boys who took me out on dates and tried to act like they would know what to do if I had a seizure; the people who looked at me with such discomfort when I was in my wheelchair because I looked so damn...normal. Gabe said to me the other day--it's so weird that you're bald. I think of cancer patients who are bald as looking sick. And you don't--you're just bald. You look the same.

Do I? It's hard for me to see it. I don't feel like me, physically, and yet I feel like me, emotionally. Spent maybe, but me. Does that make sense? Writing this blog has a lot to do with that. It's funny how they tell you that cancer can change your life, make you re-prioritize, etc. I think the people who say that are on drugs. Every cancer survivor I've talked to has said, I'm still waiting for that moment when I'm wiser, when I can suddenly move to Tahiti and live my dream life, when I become a better person, or when I feel less haunted. Still waiting for that moment when the man (the one holding the gun at your head, who might never pull the trigger but who also never leaves) goes away.

For me, the biggest change has been in making myself write, and then finding out that other people actually read what I write. I've always been horrible at sitting down to write creative stuff. But every once in a while I make myself write a poem, usually as a present for Gabe or Lenny or to remind myself of something big, like having a baby. I have a lot of poems that I know are pretty good, but they're sitting here, unread by anyone but me. No cancer poems though, not yet. For years I thought that business writing took away my ability to write creatively, and while I still find this blog to be ridiculously self-focused and I'm surprised every time I find out someone has read it, it reminds me that cancer has not taken me from me, not yet.

Of course, it has taken parts of me, literally and figuratively. Perhaps the whole really is more than the sum of its parts. For example, looking in the mirror is still a trip. I must not be totally without humor about it though, because on my walk (I was going so fast! I felt the wind on my scalp! and then four blocks from home I hit the wall. I made it, but it wasn't pretty) I started thinking about one of my favorite pictures of Augie. It turns out the picture you see of him above was taken one year ago today exactly. I got this idea in my mind, and I started laughing. Walking along the street, bald, a day after chemo, laughing at myself.

Let's assume that I get to see my kids grow up. I will right? One day we will embarrass Augie in front of his friends by busting out this picture, and I can honestly say, see honey? You really did get your looks from me.

Day 82: Food blog

So once again I think I spoke too soon in the last blog. I said that this chemo round was easier. In a way, it's true--I have been sleeping, so that is a huge improvement. But this time I feel like it hit me like a truck, starting on Saturday. I was so shaky and weak that I was having trouble feeding Augie his lunch. Yesterday I was so tired I fell asleep around 10 am and couldn't get out of bed until after noon, even though I was technically awake.

I haven't been a total recluse. We had a bunch of company on Saturday, including friends whom I haven't seen since months b.c. (before cancer). Kudos to them for not even flinching at my baldness. I went to a kids' birthday party yesterday, and I did wear a wig in order to appease Lenny. I hadn't put one on since last Tuesday, and it felt hot and annoying to me. Today when I walked her to school I just wore a scarf. It's hard to balance the desire to make things easier for my child with the need to make things easier for myself. She wants me to be normal, to look normal, but the thing is, right now I'm not. It can be tiring to pretend. So it's possible that I spent a hell of a lot of money on wigs for nothing, but I need to know that blending in is possible, if I need it, I guess. And I've still got the stubble, so I can rock this edgy look a little while longer and strangers could believe I did it on purpose.

So I have left the house, and I have continued to take walks and try to get some exercise. But damn. Chemo #2 is kicking my ass. I think a lot of this fatigue for me has to do with my problems eating. I am just never hungry. Food--one of my favorite things in life!--has just lost its appeal. I know I need to eat to maintain strength and build up my immunity, but man, is it hard. My mouth and throat are so dry, I have terrible heartburn, I am definitely constipated this time, I feel nauseous and my stomach hurts. Just a few weeks ago I was that girl who was already thinking about lunch at 9:30 in the morning. I would have dreams about Sunday breakfasts. I loved to bake, right? Now I can't even be on the same floor as my family when they're microwaving lasagna for dinner because the smell makes me want to vomit. If I drink water, I feel so full I want to lie down. It's pathetic.

So food has kind of taken over my life here. What should I eat? When? How can I drink all of this water when that fills me up and then I don't want to eat anything? If I choose to eat rather than drink, how can I avoid being dehydrated? When will this metallic taste in my mouth go away?

Why the hell am I doing chemo again?

My consumption patterns are laughable. Last night all I wanted was some frosted flakes. Now I don't even normally LIKE frosted flakes. Who knows why I wanted that. But I knew that wasn't the best nutrition for me, so what did I eat first? A bowl of fresh spinach. Spinach and frosted flakes for dinner. Why not? I eat pudding and ice cream for calories, but I'm sure that doesn't help the constipation problem.

I will be astounded if anyone actually wants to read this blog, but I'm putting it out there because it's worth saying how fast chemo takes over your body. It hasn't even been three weeks and I feel like a totally different person--a sick person. When I had cancer in my body I could still do everything normally. Now the cancer's out and I'm getting this "just in case" medicine and I can barely sit here to write.

During chemo, there was a little party going on in my room last week. In addition to a social worker (who actually was useful as she brought some age-appropriate activity books for Lenny to explore her feelings about my cancer), two dieticians came to visit me. They were concerned that I'd lost almost 5 pounds in a week and were trying to tell me that my diet was ok (fruit, cereal, hummus, rice, peanut butter) but that I need more calories. Apparently it's bad to lose weight on chemo. Well, maybe once this menopause kicks in I'll start gaining! Hell if I know.

They were less worried about me when they found out I had diarrhea--so that's why you lost weight! Well, what's my excuse now? I was depressed to see myself weighing 112 this morning, after eating breakfast. It's funny--I thought it was great to see how the numbers on the scale went down after Augie was born. Even after I had stopped trying to lose weight, it was kind of fun to see myself down to 118, a weight I hadn't been since a teenager probably. I stayed at that weight for months, including after my diagnosis--except for the first few weeks when I dropped a couple of pounds due to the extreme stress of thinking I would die. I gained it back, and started out chemo at that weight. Skinny, but I felt fine. However, this is too much. I mean, I'm going to be 35 years old! I have two kids! I'm not short! I need to get a little more meat on me somehow, especially now that I'm bald--I really will start looking like a boy. Feel free to disagree with me on that if you've seen me lately, but I'm sure feeling that way. When I was a kid and I went through an extreme tomboy phase, I tried so hard to look like a boy, and it didn't really work. Enter chemo! Sigh.

Plus, even if I look like a boy, I need to get through chemo, right? I need to have some energy and stay out of the hospital. I hate feeling like I can't be a decent mom, a normal wife, a reliable co-worker. I'm afraid I'll drop Augie since I'm so shaky. I can't eat dinner with my family half the time due to my smell-aversions. I'm working from home today because I didn't know if I would make it to the train. Affection between me and Gabe consists of a few kisses and maybe spooning for 10 minutes. It's hard to have prolonged conversations.

And worst of all I've turned into such a complainer! I don't like reading back on this litany of chemo complaints, but it's better than keeping them all in my head I suppose. This is the one time when the words "strength" and "courage" mean anything to me. I'm not alone in feeling that those words are meaningless when you have a cancer diagnosis. You aren't given lots of choices, so your pluck is kind of irrelevant. As I've said before, attitude isn't what saves people, because if it was, a lot of amazing people would still be around who aren't.

However, it never occurred to me what strength and maybe stubbornness are involved in actually going through cancer treatment. If I actually show up for the rest of my a/c treatments, that's courage. Or stupidity, or something. Because it is damn hard to make yourself do that. And then, I will need to start a whole new type of chemo, with a whole host of different side effects, once I'm done. And THEN I'll do radiation. I just keep thinking: 85% chance of no recurrence due to successful surgery. Chemo only brings it up 10%, radiation 4% or something. All together it puts me close to normal, but I have to lose so much normal to get there, that the only way to do it is to just close your mind to the reality of what you're doing to yourself and just go. Because someone told you that was your only option. Because you want to live more badly than you want to live well. And for me, because once 2010 is over, I will have the chance to probably live like a normal person, albeit with fear, and some lingering side effects, and the memory of the things that cancer took from me. It is amazing to me to think about the people who go through this knowing their cancer will not go away, who do this for palliative reasons. That is some strength I don't think I have. If I do, I would really, really, rather never find out.

Day 76

Though there isn't much news to report, I really felt that I needed to write a bit about hair again. I have to say that it is very interesting being a bald woman. Well, I'm not yet really bald--that will be in a few days. It's actually fascinating to me how fast my little buzz has grown in just 5 days. I kind of wish it hadn't, since that just means there's more to fall out over the weekend.

As I said earlier, I have been wearing one of my wigs to take Lenny into school and to pick her up. These kids have no clue that one day my hair is significantly longer than the next. They don't care--but they would if they saw me without a wig, and then Lenny would have to answer some questions, and that's not fair for a 4 year old. She has made it clear that she wants me to wear a wig to her school, and that's fine. She's going through enough. Since they're little, I'm sure her classmates' interest would be fleeting. But of course they would notice--for example, the boy next door just laughed when he saw me, and until that moment I hadn't even really thought about being bald in my back yard. I'm sure he'll get used to it though, since he'll see me all the time. And in that situation his parents could explain it to him, leaving Lenny out of the equation.

At work it's been a different story. I've taken the wig off as soon as I got into my office. So in the hall, the cafeteria, and the gym, I've been bald. And everyone has pretended not to notice. My old boss saw me and said "Gaa!!"Then he kind of looked at me and said, "that doesn't look so bad." A few minutes and several non-sequiters later he said, "that looks kind of good actually." Our admin said "Oh, you poor thing!" One of the economists, who happens to be bald himself, told me that he liked my hairdo. Almost everyone else acted as if they noticed nothing different about me. At the gym yesterday it was the elephant in the room. Who is looking and pretending not to? Um, everyone. After class one guy came up to me and said "Well you look different!" Yeah, I know, I said sheepishly. "Well, it looks nice." Today, a young girl saw me at the gym and said "your hair!" I said, yes, well, it wasn't my first choice. She asked if it was "for something." I said yes--breast cancer. She said she was sorry, how long did I know? We got into the whole conversation. At some point she said "at least you have a beautiful face to go with it. It looks good."

In the general world, it's been a mixed bag. On a walk the other day I was wearing a bandana. A neighbor whom I didn't even know knew my name called out "Hey Katy!" from across the street. I thought, how did he recognize me? Gabe thought by my legs. Then, Gabe and I went out the other night and I did indeed go bald. We ate in the south loop and went to see a movie. When you're hanging out in an area full of art students, a hairdo like mine doesn't attract much attention. It was refreshing to be able to not worry about wearing anything on my head and still blend in. I guess in a city the size of Chicago, you could be edgy, you could have cancer, and there's so many damn people most people have seen one or the other and they just don't care. I got a few looks of curiosity, and a few of appreciation, all from men. This just reiterates what women's magazines tell you. When they ask 50 guys what they like about anything pertaining to women they get 50 different answers. The lesson is if you'e got something, someone out there is bound to like it.

What else did I learn from my first few public days as a bald lady? One, that it helps to have people acknowledge a difference. But then again I knew this already. I remember being in a wheelchair and having several kids come up to me at different points and ask what was wrong with my legs. Adults, on the other hand, would give me weird looks or do that adult thing where you pretend not to notice something, thereby making it more obvious that you notice. I much preferred the kid version. Same with this baldness. It helps when people say the right thing too.

Two, I learned that it helps to look good bald. I feel almost strange about it. I mean, it's not like you get a free pass if bald won't flatter you--you do chemo for breast cancer, and you lose your hair. Everyone going through this should have the prerogative to go bald if it makes their lives easier. Sometimes I can almost feel the relief when people tell me I look good, or that it's not that bad. It's like they would just feel terrible if I didn't, and I subjected them to looking at me anyway by not wearing a scarf or a wig or something. Now don't get me wrong, I greatly appreciate the compliments and it makes it much easier to go through a transition that I still wish had never happened. I wish I needed my hair clips and bands, my shampoo. It's hard to get used to rubbing dove soap on my head and taking three minute showers. And there's this strange pressure to somehow change your whole style when you go bald. There are all of these classes and articles written about the right makeup and jewelry to wear if you're bald due to chemo. I've either worn no makeup or the same, and I don't even have pierced ears, so I can't do the jewelry. But I just find it curious that there's so much attention being paid to lessening the impact. One article said that if you are a bald woman, people will notice you. It's inevitable, so give them something good to notice. Really? When men go bald they're told to just rock it out. It's sexy. So I guess I'm going to take that advice. While I greatly miss my pretty hair and the identity that went along with it, it does in a way seem like just hair now. Once my hair was actually gone, at least down to this stubble, I looked at it in the plastic bag and thought, well, that's some very pretty, very dead stuff right there. Part of me, laid out in a bag.

Well, enough with the hair for now. My exciting news is I slept like a normal Katy last night. I fell asleep on the couch watching tv with no melatonin or anything. I woke up about 4 hours later, went up to bed, actually fell asleep eventually. Let's hope the same is true tonight, before I start chemo again tomorrow and the process starts all over. Sigh.

Sleep and hair have dominated my post-chemo blogs, so I feel like I haven't said much about the other chemo side effects. Does anyone really care about this? Who knows, but here goes. I have a super-nose now. I can smell things I never thought existed, and I'm not sure it's a good thing. I'm never thirsty but I am absolutely parched. It's hard to describe the difference, but it's there. I've lost my balance and I get motion sickness. Moreover, I was told I would never get nauseous after the first few days. I got through a week without vomiting. I've gotten sick twice this past week. When Gabe and I went out the other night we got some Indian food, and I took the advice of all the docs who told me to take advantage of days when I was hungry. So I ate a nice big meal. Now this is 113 pound me, so we're not talking huge quantities of food here. And it was low-fat, vegetarian Indian food. But I felt SO sick during the movie. At home it was no better. In fact I felt so sick I did something I've never done in my life--I sat there until the very act of the dry heaving made me vomit. In a sense, I made myself do it. Bad idea. Will I ever eat Indian food again? Boy does spicy food not taste good on the way back up. My stomach and throat hurt for a day after that.

I told the chemo nurse about my vomiting. She said, get this...that maybe I have a stomach bug. So, immediately upon starting chemo I got some anxiety attacks and the stomach flu? They're not, you know, related to chemo or anything right? I'm just giving up on telling them about my side effects unless they might land me in the ER. The docs also seem annoyed with me that I went to a neurologist and to my GP about my sleep. Well, maybe I wouldn't have done that if you hadn't told me to just go to the social worker to sleep! I have since talked to two other breast cancer survivors who had the same exact sleep issue as me. And I only know about 8 survivors, so that's a pretty big percentage, it seems to me.

I've since learned that it can be pretty common on A/C to have this anorexia/bulimia response. You have very little appetite so you don't eat much. Then, when you do eat, it makes you feel sick and you want to vomit. This is exactly what has happened to me. You all know I love to eat. My weight loss has not been achieved by dieting so much as be exercising and eating less. But now, there are so many foods that just aren't appealing. And I can only eat a little at a time. I just ate too much of that Indian stuff the other night. Not literally--just for my new appetite. And I had to make myself get rid of it. I never thought I would do that in a million years. Of all of the strange things people go through, there are a few I could never relate to. Drug and alcohol addiction are two. Anorexia and bulimia are some others. But of course this type has a totally different cause, due to extreme nausea. Regardless, it's kind of bizarre.

Chemo has changed my body so quickly. But except for this hair, it's all going on inside of me. The girl at the gym today came up to me after our initial conversation and said "I'm sorry, should I not have done that?" I said, hey it's no secret. Yesterday everyone acted like they didn't notice so I appreciate you saying something. And she said "Well, you would never know." I got what she meant. I had told her I found out about my breast cancer on May 4 and that I've had two surgeries since then. She's seen me for two and a half months in the gym, favoring one side, not showing up as often, but there, looking like myself. I'm bald, but other than that you would never know. Unless you live with me, or read this blog, that is.

I was reading an article today in BrainChild about stuttering, and the author said a few things that really hit home. She said, "I don't believe everything happens for a reason. I don't believe every problem is an opportunity, or at least an opportunity worth the price." She also said that when asked if the glass is half full or half empty, she sees it as both. That's all exactly right, at least to me. So, here's to round two. I just need to get through the next several days and I can tell myself I'm half done with the really bad stuff, a quarter of the way done with all of it. Dealing with the actual day to day bullshit of chemo is the half empty part, and getting it over with fills the cup.