Day 775: He's Dad Enough

I figure if putting the things I’ve written on this blog out there on the Interwebs hasn’t already blown up my computer, I should just keep going. So, I’m going to share an interview that I just did with my husband Gabe, who turned 37 a few days ago and greatly enjoyed his 7th Father’s Day yesterday. Why the interview, you ask? Well, because today he had a vasectomy. At Planned Parenthood. And oddly enough, no one was threatening to firebomb the joint while we were there or anything like that.

I've put some stuff on this blog for the sole reason that it didn't seem like anyone else was talking about the things I really wanted to know and understand about cancer, and this fits right in with that theme. This time, maybe some guys will benefit from the information. If not, there are at least two people who find it entertaining. Gabe's pleased that I'm letting him talk for a change, even if I am posting pictures of him all doped up on painkillers.

Right after Augie was born, when we were both half dead from sleep deprivation, Gabe said he wanted a vasectomy. I thought it might be a little soon, and that we should make that decision when Augie was a little older. Then, he was a little older, and I found out I had cancer.

And we didn’t know what the hell to do, in general, much less about family planning.

I figured there was no use in Gabe getting snipped if I were to, say, die, and we also had no idea if and when I would come out of my chemo-induced menopause, so the operation would have been a waste then too. I was in a strange situation for a woman with breast cancer. Most women are post-menopausal. For those who aren’t, the vast majority are estrogen positive, and are on tamoxifen or other drugs that often keep them in menopause for five years. But since I’m triple negative, I took no drugs after chemo, and I knew it was possible that I could get pregnant, even though that could have disastrous consequences. Even after menopause left me and my hormones came raging back, leaving me in this perpetual adolescent state of uber-fertility and libido, I didn’t want him to have the operation. I mean, he’s still a fairly young man. If I don’t make it, I want him to be able to have kids with someone else. I told him this about a year and a half ago and he became absolutely enraged with me for giving voice to that idea. I still carry this strange guilt about the whole thing, though.

Well, the whole point of having control over our bodies, sexuality and fertility is that we should be able to have control over those things ourselves. And Gabe wanted a vasectomy, so my guilt is really beside the point. This is the kind of thing women have been fighting for, to keep men out of the decisions they need to make for themselves. And in our situation, it makes perfect sense. We are happily married and we have kids—one of each, cute and smart. It would be extremely dangerous and potentially deadly for me to get pregnant again, as my cancer recurrence risk would go up, and then there’s the pesky issue of leaving Gabe with three kids to raise alone as opposed to just the two. And we could always adopt; Gabe has been supportive of that idea, as his mom and aunt were both adopted. But I don't think we would qualify as adoptive parents with my health history, and that would still leave the specter of him raising more kids alone. So, I think we are really done having children, which is a reality that is both unfortunate and a relief.

Those are my thoughts, however. It’s his body and his sperm, so I’m letting him have final say. Here goes nothing. Good thing neither of us is interested in running for office.

K: So Gabe, why did you decide to get a vasectomy?

G: There were many reasons. I love you and I love making love to you and I don’t want to get you pregnant accidentally, especially not anymore, not after cancer and definitely not after Augie.

K: Why you though, why wouldn’t I take care of the birth control situation?

G: It’s only right that I volunteer once to do a surgery that would be much more difficult for you to do, especially after all the surgeries you’ve had. You can’t take the pill or do other hormones so it’s the least I could do to improve an unpleasant situation.

K: Are you sad about not being able to have more kids, with me or with some other potential woman after me if I don’t survive cancer?

G: You’ve already survived cancer and you are going to survive for a long time. I can’t imagine having children with anyone but you. I can’t imagine us having any other child more perfect than the ones we have. (Gabe is tearing up). I do feel sad in that I feel like cancer has forced our hands and we will never know what we would have done otherwise, though otherwise I might have done it long ago. But we do have this big house now and I can imagine us filling it with kids, if we won the lottery or something. There are circumstances under which if you hadn’t had cancer, yeah, maybe we’d have a house full of kids running around and going crazy and pissing us off. But this was the right time for the right reasons. I’m a little wistful but I’m good with it.

K: Do you think you’ll regret it?

G: No, never.

K: OK I won’t ask you many more emotional questions. So why Planned Parenthood? I knew they offered vasectomies since my dad had one there when I was a baby, but not many middle class families think of them for men’s needs. In fact, when I told my ob/gyn the plan, he was surprised and said he didn’t think “they dealt with men.” But the truth is they’ve been offering vasectomies for 100 years.

G: Because my insurance wouldn’t cover a regular urologist, as they don’t cover voluntary sterilization. It would have cost about twice as much to go through private practice. Planned Parenthood asked me why I came to them and I told them I knew other people who had done it, and I tried to go through my insurance but they wouldn’t cover it, which is ironic because if I got my wife pregnant again, and she had the baby and got cancer again, it would cost hundreds of thousands of dollars to have the kid and to do the cancer treatments. I’d like to send the receipt to the insurance company and bill them for the money I saved them.

K: OK so let’s get down to business. What did you have to do to prepare for the operation?

G: I had to do a consultation visit to learn about the procedure, check my medical history, and make sure that I was doing it for the right reasons and wasn’t being forced into it. As one of 15% of men who have had a medical problem known as varicocele (varicose vein in the scrotum), I had an operation on the left testicle almost exactly four years ago. I had known about it since I was about 19, but it was affecting our ability to get pregnant after Lenny was born and I was in pain and discomfort all the time. There was a slight chance that because of that surgery they might not be able to do the vasectomy at the clinic but that turned out not to be the case. That varicocele surgery was under general anesthesia and I don’t remember much of it. I was apprehensive about it and that turned out ok so the vasectomy seemed like much less of a big deal. The most annoying thing I had to do to prepare was I had to shave the underside of my penis and the front of my scrotum. I just shaved the whole damn thing though and it took forever.

K: Let’s take a sidetrack here and you can tell everyone about the conversations you held at the clinic about shaving your balls.

G: Well, after I complained about how long it took they told me I did a very good job. In the course of the whole thing I kept telling them I was most annoyed about shaving my balls. I said they should have a support group for how to do it right. Then when I was leaving I saw the guy after me coming in. I told him he looked good for a guy who was about to have an abortion. Everyone cracked up; the doctor told me that was the funniest thing anyone had ever said in that room. And then I asked the next guy about the whole ball shaving thing. Apparently this guy shaves once a week so I told him he should lead the support group. We were bonding.

K: I think there are about 100 people who just unfriended me on Facebook after reading that. But anyway, what was the procedure like?

G: When I went in they asked me if I was there for a vasectomy and since it looked like a salon with all the chairs, I said I was there to get my nails done. Then they needed to make sure I was there by my own choice. They asked me why I chose a vasectomy and I said because of this wonderful thing called cancer. My wife had breast cancer and she isn’t supposed to get pregnant again. They asked if I had kids, and I said I had two beautiful smart redheads and I DIDN’T WANT ANY MORE OF THEM. Then they asked if I wanted to go under or have anesthesia. I asked what most people do and they said that some people just walk away or even drive themselves home and some people have more fun on anesthesia. I said oh I guess my wife didn’t need to take the day off work to drive me home, and I think I’m pretty fun anyway so I’m going to not do it. I told them that when I had the varicocele surgery I was under general anesthesia, and I had missed the part where the doctor told me that one of the veins he removed was so big he could stick his finger through it. I didn’t want to miss anything good like that.

K: But they must have done some local anesthesia.

G: Yeah there was some topical stuff applied. They gave me an IV but I didn’t use it. I told them I thought IVs were to make their jobs easier, and I told them about how you refused to have a port. But they got my vein on the first try because my veins are so huge. Anyway, then I went to the operating room and I sat on the table and asked if I should pull my pants down, and I started screaming about being afraid of stirrups, though of course there weren’t any.

K: They must have loved you.

G: Well the doctor had already high fived me, because at the beginning they explained that I would have to come back for a semen analysis after ejaculating 20 times to make sure the operation worked. At the consultation, they had told me 15 times, but not to do it all at once. So I told the doctor that, and asked who these people are who are going to try for 15 at the same time, and she said, can you imagine the kinds of men that come in here? I said, well I know enough to think that about 90% of all men should just be euthanized, at which point she high fived me.

K: Another interjection. Do you think you’re one of the 10% that deserves saving?

G: (long pause). I’ll defer that answer to my lovely counsel, also known as my wife.

K: Good answer! and I suppose you are. Anyway what about the procedure? What did they do? Did it hurt?

G: She started moving stuff around down there and told me it might pinch. She used something that was like the scrotal equivalent of a staple gun. It didn’t hurt. Then she warned me again and I told her to just do it and stop warning me. After the staple gun it felt like she jammed something right into my testicle, which did hurt. Then I got more local stuff, and eventually they cauterized the vans deferens or something. The whole surgery took like half an hour.

K: Yeah I was surprised to see you walking out of there on your own so quickly. How do you feel now?

G: I feel ok though I need an ice pack for my balls. Can you get me one?

K: Yes dear.

K (back with ice pack): So any worries? About pain or sex or anything?

G: The biggest pain so far was when they tore the IV tape off my arm since it’s so damn hairy. They said that 4 out of 1000 men who get vasectomies lose the ability to maintain an erection without any physiological reason so it’s more of a psychological thing related to the fact that there are these morons out there who think that if they can’t get a woman pregnant they aren’t manly or something. They are in the 90%.

K: So, you feel just as manly?

G: Yes, I do. I feel more manly, actually, because I did it without anesthesia.

K: Yeah, way to man up. Are you excited about the prospect of not having to use condoms soon?

G: Absolutely. And I’m excited thinking about how fast we can get to that 20 mark.

K: Right. Anyway I’ve talked about condoms my fair share in this blog. I’m a fan, for a lot of reasons. But from a guy’s perspective, what did you think about using them? I mean except for the 9 months I spent pregnant, we’ve used them continuously since Lenny was born. Did you think they were annoying or that it didn’t feel as good?

G: Putting them on and taking them off is annoying. But with the newer super thin condoms you can’t tell that much. And it’s sex, and it’s sex with you, so you know, it’s awesome.

K: I’m kind of looking forward to not having to worry that people will find the condoms that you stashed all over the house, just in case. Like the ones in houseplants.

G: Thanks Kate. Now no one will ever want to visit our house again. Maybe you shouldn’t say that in the blog.

K: Too late. So should I be concerned about you cheating on me now that you don't have to worry about getting anyone pregnant?

G: That is a completely ludicrous question. Though I was going to ask if you care if I go to my 20th high school reunion by myself. No seriously, you are more than enough woman for me.

K: Good to know. Any last thoughts?

G: Yeah now there’s one less thing for you to nag me about! And I love you. And it was better than CATS. I would do it again.

K: Love you too, babe. Happy Father’s Day. I guess you are already dad enough.

Day 771: For My Husband's 37th Birthday

Today is Gabe’s 37th birthday. We have a crazy day planned; I will rush home from work to get ready for a formal event for Row4Row tonight while he runs around and takes Lenny to gymnastics (where she is being evaluated to see if she can bypass the next few levels and begin to be groomed for the competitive team; how did this happen? I can’t do a cartwheel. When I was a kid I played basketball and floor hockey. Who is this child?), drives home, waits for the teenage babysitter, and then gets ready to meet me so we can go out alone for a late dinner at a steakhouse with a rooftop. I don’t think he’s happy with his role in this plan, but, you know, he’s doing it. Even though it’s his birthday.

He is impossible to buy presents for, and he asks for boring things like socks and rain boots. In fact, his gifts were so boring this year that I didn’t even bother to wrap them; he took them out of the bag this morning after the kids and I sang Happy Birthday to him and he blew out a candle I stuck in a blueberry muffin. I am not that good at sentiment, so I will give him a card from the store and it won’t be filled with accolades and proclamations of undying love, unlike the cards he gives to me. I am hosting a party tomorrow, and I will bake him a cake and make his drinks. I have one surprise for him but it’s a surprise, so I won’t outline it here. The present he is most excited for is the dress I will be wearing tonight. I was trying to figure out what to wear and I tried on a bunch of different things, including this $20 sequins-filled number that I bought in the juniors department at Carson’s at some point that has been sitting in the closet because, really, with my life, where would I wear that? Gabe just about fell over when he saw me, and said that me wearing that would be a great birthday present for him, though I shouldn’t expect him to be able to hold a conversation with me or make eye contact while I’m in it.

Ah, my husband, with his metabolism and hormones; it’s like the tenth grade up in here sometimes.

And that is one of the things I do appreciate about him. There is no pretense with Gabe, no attitude. He has a terrible poker face. He’s cheesy. Sometimes he’s really shitty. He doesn’t know how to hide it. And he adores me, and lets me know that, which can drive me crazy, since I’m not very mushy, but it’s also quite endearing. I’ve said this before—Gabe and I fight. Cancer made that worse. We might be that couple that annoys other grownups because we act like teenagers around each other, but just because we have that passion doesn’t mean that I don’t have moments when I want to throw in the towel. When you’re married, you always have times when you’re like ships passing in the night. There’s so much to do, especially with two working parents, and sometimes life is just filled with those things. And then you get shitty with each other. He gets crabby about nothing and snaps for no reason. And then I yell, and he pulls away, and then we become really annoyed with each other because we have such different fighting styles. Or, we fight, walk away from each other, then he falls asleep and I’m all OH HELL NO YOU AREN’T SLEEPING!

Yeah, sometimes it’s like that.

Not most of the time, though. Most of the time, I do realize that it would be hard for me to be married to someone else. I’m challenging in a way that requires someone who is not only up to the challenge, but intrigued by it. I have always known that about myself, and I’ve managed to find guys who fit the bill—at least for a while, sometimes for years. This guy bought in for forever. That took courage, right? And it’s not like he’s had the same experiences with me that other couples in their 30s have. You know, what with the cancer and all.

So, here’s my chance to do what I never do and list some things I love and appreciate about my man. Read it baby, because you know I will not be bringing these verbal compliments into regular rotation. For better or worse, I’m a terrible ego-stroker. But here goes:

20 Things I Like About Gabe

1. His willingness to make major decisions as if they are minor decisions (Don’t want to live together if we’re not going to get married? OK let’s get married! Don’t think I want to have kids, but wait I would definitely have kids with you! Buy a house? Become landlords? Sure, why not, what’s for dinner?)
2. His total lack of daddy issues, even though he has 5,000 reasons to have them
3. His appreciation and understanding of luck
4. The way he will always eat, shop, and consume natural resources as if he is on the edge of starvation and abject poverty, no matter how far away we are from those things
5. The fact that he’s “that dad;” the one with six kids climbing on his back, who has squirt gun fights with neighbors, does cartwheels down the hill, plays shark attack and generally roots around on the floor or in the mud while I do something else
6. The fact that he can sing, but he can't dance at all, but he does it anyway because he just doesn't care
7. His nurturing side, because I’m not that good at it, and someone in our house has to coo at the kids and cry at Hallmark commercials and call people sweetie
8. That he is such a homebody (though that can be a problem sometimes) and so into spending time with the family that his idea of an awesome night is to catch lightning bugs with the kids and then watch Hawaii 5-0 on the couch while holding my feet in his lap
9. That he doesn’t have any addiction problems (seriously…what a bonus! I could not deal with a hard-drinkin man!)
10. His faithfulness, which I never question or even really think about, even though he still has that crazy libido, which is also nice, I admit
11. The fact that he’s like the male version of the hot librarian, kind of dorky, refuses to wear contacts, etc., and then he takes his glasses and his shirt off and people are like, wait, who’s that? Where’d that come from?
12. His interest in things that are different from mine, like astronomy
13. His subscription to the Economist (though really, can you recycle them at some point? WHY ARE THEY ALL STILL IN MY HOUSE?!)
14. His understanding of nontraditional families and acceptance of extended family drama
15. His company during football season, and the way he laughs at me during March Madness or other sporting events when I become a crazy person, yelling at the kids to get away from the TV so I can watch the game and saying hey baby, I’m not leaving the couch so you need to make dinner, ok?
16. His reluctant acceptance of all my shoes and how good he is at painting my toes
17. His ability to do awkward physical things, like carry enormous, heavy and unwieldy appliances and sinks etc. into our house, or the way he can contort his body into some strange shape and somersault through a small window when we get locked out of a house
18. His lack of concern with needing to appear manly, down to the fact that he can actually give other straight guys compliments
19. The fact that he can do pushups with me lying on his back (even if it’s only a few)
20. The way I’ve learned to get over the fact that Lenny will always be a daddy’s girl, and Augie will in some ways be a daddy’s boy, because I am really happy that they like their dad that much.

So next time you get insecure or worry that I will leave or wonder why I love you, Gabe, you can read this back to yourself. Because my answer in person will always be, I just do, ok? NONE OF YOUR BUSINESS!

Happy birthday baby.

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 690: Going Through Puberty...In Your Thirties

So, I’ve been thinking about writing about this forever, but it just seems too absurd to even put out there. And yet, that’s why I do this, right? I write this blog to bring a little bit of the absurdity of cancer into the consciousness of some portion of the general public.

Today I’m going to tell you what it’s like to go through puberty. When you’re in your thirties.

I had a fairly mellow real puberty experience a quarter century or so ago. I was a major tomboy from the age of 8 to about 12, but I was pretty comfortable with myself at that time. I resented my mom for making me buy a training bra when I was 10 (I mean, she stopped wearing them when she was 17, so what the hell?), and I found it more than a little annoying when I got my first period a few months shy of my twelfth birthday. I read all those Judy Blume books and didn’t relate to any of them, except maybe Tiger Eyes, because the girl in the book had some legitimate problems. Even Forever seemed cheesy, and I knew I didn’t want to ever have sex with boys who named their penises and expected me to use said names in conversation.

I wore some strange clothes in junior high, in part because it was the late 80s, and in part because I was figuring out how to actually dress like a girl again. I liked boys who would never like me back, and I was vague and indifferent to the ones who did like me. I would give anything to get a little bit of my dating haughtiness back from the golden ages of 12-14. I would say things to boys like “I don’t want to talk to you on the phone right now.” “I’m sorry, I don’t like you that way.” A boy would say please, I would say no. When did I learn to hide my feelings and lie?

But I digress. The point is, I went through the horror of 8th grade like everyone else (I think that’s the nadir of American children’s lives), and yet my awkwardness was relatively muted. I was pretty comfortable with my body and saw no reason to either hide it or show it off. I dated a lot, and almost all the boys I dated fell into the category of “kids who were so nice to me their friends made fun of them.” I liked fooling around and eventually I liked having sex and I never felt any regret about the things I chose to do or not do. I never had acne. Shit, I never even had bangs. I look at pictures of myself from that time and I look shockingly normal, given the fashion trends in the early 90s.

I did have some issues—my periods were so heavy that I was anemic in 7th grade and was almost put on birth control pills to help, until they realized that would interfere with my epilepsy medication. I got sick every month, and my cycles were long. But I never had any PMS (just violent vomiting for a day once my period actually started), my moods were fairly constant, and transitioning from being a girl to a woman was neither difficult nor surprising.

Then, I went on the pill when I was 18, something I would give anything to do over, given how sure I am that 11 years on the pill eventually led to my contracting triple negative breast cancer, but again I digress. My cycles suddenly became regular, short, and painless. I never got sick. I didn’t gain weight—well, not right away. I think the pill made me gain 15 pounds or so, but it took several years.

Then, fast forward. I went off the pill at age 29 in order to conceive a baby, and it worked. A few months later, Lenny was growing in me. I have never gone back on the pill, but of course I spent much of 2005-2010 either pregnant or nursing, so I had no idea what a “normal” cycle would be for me. When I began having normal, regular periods when Augie was less than 3 months old, even though I was exclusively nursing him, it seemed strange, but I figured what the hell. Let’s see what happens when I stop nursing.

I never really got to find out. I was nursing, then I found out I had breast cancer, and within four months I was in chemo-induced menopause. IT hit me like a truck. I literally had hot flashes every ten minutes all day long. ALL DAY AND ALL NIGHT, I would feel that fire tear through my body. I lost my natural lubrication and sex, while possible and eventually pleasurable, was depressing to me. Sex had always been so easy and so fun for me, I was more like a guy than a girl in the way I perceived it. I thought about it all the time—until menopause, when I never thought about it at all. How can hormones change your actual thought process? I never would have believed in the close mind-body connection of sexuality if I hadn’t seen the disastrous effects of menopause on my body and my desire. Menopause depressed me so completely. And then, it left me—so completely. I was desperate with hot flashes and sadly missing my sexual mojo when BAM. I was back in business.

And I started going through puberty.

You might think I'm exaggerating, but think about it. After Augie was born, I lost weight like crazy, and I've been hanging out in this size 0/size 2 reality ever since. Because of this, I shop in the juniors department at my local department store, where the salesladies have taken to setting aside size 26 Silver jeans for me. I think they like talking to people who don't have to come into the store with their mothers. Look, she has her own credit card. Go help her! God knows I need it.

Plus, I have new hair, and people treat me differently. I am like a tween in my bathroom, awkwardly trying to figure out how to use a straightening iron. After being bald and generally not worrying about what people thought of my looks, I am surprised when I get attention from men. And it's an adolescent surprise, full of flattery and pleasure but trepidation and suspicion as well. It makes me feel 14 again. I am in better shape than I have been in years--I might be in the best shape of my life in some ways, with my relative musculature and strength given this petite little frame. And yet I feel unsure of myself. I worry that I am too fat, or too skinny, or too something, which I never have really worried about, at least not for more than a fleeting minute. I look at and feel my breasts a lot, not to try to detect cancer, but out of some kind of absurd appreciation for what I've got left.

Are you there, God? It's me, Katy. I think I've lost my damn mind.

Anyway, for the last year, I have had periods every 24-28 days. These cycles are shorter and more regular than any I have had in my 25 years of menses. They are completely different, as well—the pattern of bleeding is very consistent but nothing like what I have ever had before in my life. Add on to that the fact that for the first time—EVER—I have every PMS symptom you can name, and it’s like 9th grade up in here sometimes.

I gain 3 pounds in the week before my period every month and my clothes don’t fit right. Then I pee nonstop for 24 hours and it’s all good. I get bitchy, or I yell at Gabe for no reason, or I start to cry on the train, and it’s like a little hormonal alien has invaded my body. I get headaches the day before my period starts, and I have a night of almost complete insomnia (with less than an hour of sleep) like clockwork once a month. I have bad cramps on that first day. My libido, which was always fairly constant, disappears for several days about a week before each cycle, and then comes roaring back and for most of the month I’m like some kid who’s discovering how awesome sex is.

Oh wait, I am actually that kid, because I had six months on the other side, and now I’m trying to make up for it.

But again, I digress.

I am too old for this shit. Pregnancy hormones, fine, I can handle that. It’s expected and you can talk to other moms about it, because everyone goes through that to some extent. But who do I talk to about this? How do I get used to new cycles, new hormones, new patterns that disrupt my life WHEN I AM 36 YEARS OLD AND I SHOULD HAVE BEEN DONE WITH THIS 20 YEARS AGO?!

I mean damn. My oncologist always asks me if I’m still having cycles, and he always seems surprised when I tell him how freakishly NORMAL everything is. “Well I guess we reset you with that chemo!” Ha ha, mother…

You know what I’m saying.

Every month it’s new to me. Every symptom comes as a surprise, and I feel ignorant, and young, but not in a good way. It’s just another sign that I’m not used to my body—the body that I have always felt fairly at home in, no matter what it was doing to thwart me.

Stupid cancer.

I’m starting to get it, starting to adjust to this new normal, but it’s tough. Cancer brings you to these weird places, because you can’t appreciate things in the same way that other people do. I could be happy with the regularity of my cycles, with my raging hormones, but it just makes me worry that somehow that will trigger cancer cells to blow up on me again. I worry that my cycles are short and that I have more periods every year than I should have. I think about menopause, about how awful it is, and that Flowers for Algernon feeling comes back to me and I want to rage against the possibility that I will deal with that again in 5, 10, 15 years, that I will lose all of this.

Shouldn’t I just be glad if I get to those 5, 10, 15 years, you ask?

You don’t ask that if you’ve had cancer. Everyone who is a survivor needs to be able to think like you do, that those 10 years will come, and we will still be here. If we didn’t think that way, we would be insufferable to be around. And yet…we all acknowledge that those years might not be intended for us. We acknowledge that while others go through middle and old age, we might not get there ourselves.

We know that most people don’t think about dying while they’re going through puberty.

So what is there to do but laugh? I’m in on the joke, but you can see it, can’t you? There’s something there, behind those eyes, something that knows that it’s funny and knows that it’s not. I’m just doing my best to live inside that something.

Day 637: Komen, Planned Parenthood, Women, and Sex

It would be impossible for me to ignore this entire Komen fiasco over the halted funds to Planned Parenthood, even though I would really like to ignore it. So rather than talk about Komen directly, or Planned Parenthood, or abortion or politics or pink, I want to talk about one specific topic:
Sex.
It has to be said—every aspect of women’s health, and often of women’s lives, is often reduced to this. We are sex objects at the same time that we aren’t supposed to actually like sex, or want sex, or make decisions about sex. Someone decides that an organization that provides a wide range of health services for women should no longer be given money, and the underlying reason (regardless of Komen’s overall goal to not give funds to groups under Congressional investigation) is that sometimes—after they have sex—women get pregnant when they don’t want to. If an organization that might save women’s lives is willing to accept this, it apparently does not deserve to exist.

And how does this happen? How do we get marginalized into talking about sex or sexuality when we should be talking about living or dying? Well, here’s an example of how that happens. We find out that we have breast cancer, and it is terrifying, and sad, and unbelievable. And then the world wants to save our breasts. Not US—our breasts. Our tatas. Friends joke about how they would definitely get them both cut off so they could get bigger and better ones for free. Doctors try to lead us to believe that deciding between a lumpectomy or a mastectomy is a “personal choice” that should be based on what will make us feel “more comfortable.” Nurses counsel us on dealing with our body image—or our husbands’ or boyfriends’ reaction to our new bodies—as if following the operation, we will be somewhat less than whole. Because something has happened to those beautiful breasts.

Or, the world wants to save our hair, to protect the world from the vision of a bald woman, through a relentless marketing blitz for wigs and hair coverings. Men cry when they find out our long beautiful red hair will fall out. Women tell us we are beautiful “anyway.” Everyone and their mother tells us “it’s just hair, it will grow back,” as if to say dear God it’s really not just hair, you strange bald freak, and boy I cannot wait until it grows back so I can look you in the eye again. The world even wants to save our faces. We are offered “beauty” classes to show us how to hide the discoloration in our skin left by chemo, how to draw on eyebrows where there are none, how to stop looking tired, how to stop—STOP IT GODDAMN IT! Stop looking sick!

And so often no one thinks, wow, she just lost a body part—she just had an amputation. That must feel different, that must be strange when you move your arm and notice something’s missing. No one says, I wonder if her head is just cold, perhaps I could knit her a hat? No one asks if it hurts, if you’re scared, if you’re still attracted to your husband.

Perhaps it’s too easy for me to say these things. I am sitting here now with a normal head of hair, a remarkably well-functioning body, the same face I’ve always had, and by God a decent looking pair of perky breasts of my own. A little scarred and tattooed maybe, a little dented in one place, but still perky, still mine. But I lost so many things myself, so many things—and none of it felt the way other people thought it would feel. I didn’t feel unattractive. I didn’t worry that Gabe wouldn’t want me. I didn’t think that being bald and scarred eroded my femininity. I thought I might feel those things, I anticipated those losses before they happened, but once I was in it, I didn’t feel that way at all. Because I really didn’t give a shit.

Because I had cancer. And I thought I might die. And I didn’t like being reduced to a perky set of tits, a beautiful head of hair, and a pretty face. I wanted to live and be healthy and know that my body could do the things it could do before I had cancer.

I wanted doctors to listen to me. When I said that chemo-induced menopause was the second most depressing thing that ever happened to me from cancer (after fear of death), when I said that my “impotence” (we don’t have a word for it for women, do we?) made me feel like someone else, when I said that having somewhat painful sex three times a week was unacceptable to someone who had been used to having wonderful fun sex every day, I wanted the doctors to look me in the eye and HELP ME. Not look away embarrassed, make sly comments about my husband, tell me he was a lucky guy, say just wait, tell me well now you know how it is for many women, or shrug and say at least you’re still alive. But Doctor this is crazy! I’m sure your husband understands. Excuse me, is he even here? Has anyone ever told a man dealing with impotence for any reason that it is irrelevant, unimportant, or the least of his problems? (For that matter, has anyone ever told a man with testicular cancer, well, you only have it in the one, but we’re going to take the other one too—you don’t need them to live? Has anyone ever proposed halting funding to clinics like Planned Parenthood because they provide vasectomies? Or pulled ads from NFL or NBA games because one of the players commits a rape?)

I wanted to think that if it is common for women with lumpectomies to have recurrent mastitis due to “mouth to nipple contact” (these MDs apparently can’t say “kissing or sucking your breasts”), someone could have told me that rather than treat me like I was 11 years old. I’m sure that husband everyone always seemed so worried about would have liked that too; he would’ve appreciated the opportunity to NOT pass on to his wife an infection that gave her a 103 degree fever, almost sent her to the hospital, required a 10 day course of strong antibiotics, and made her believe she had inflammatory breast cancer.

What’s more important in the medical field—infantalizing women by doing things like asking their husbands of 20 years to leave the room during breast exams because the staff is too embarrassed, or actually giving us good information and access to care? What person in the world, man or woman, thinks a mammogram is sexual? Why are men—often our closest confidants, the ones who shaved our heads, held our hands while we vomited, changed our bloody post-surgery dressings, and swabbed our hips with alcohol before they gave us painful shots to stop our white blood cell count from plummeting—not allowed in mammogram waiting rooms? Who really thinks that women will feel embarrassed to be around men in their hospital gowns when waiting for an exam that is excruciatingly painful and might tell you that you have a life-threatening illness?

Why is it always about sex?

Or never about sex, when you need it to be?

Women have breasts, and uteruses, and we are the only ones who get pregnant and we are generally the ones who get breast cancer. But as a society we have this need to see women as simultaneously over sexed (pole dancing for fitness, anyone?) and sexually naïve or incompetent (good girls don’t talk about those things!) We hammer information about pregnancy into teenage girls heads, push the pill on every 18 year old in the country, and don’t seem to care what the effects of such decisions are. We don’t care about the side effects, the link to triple negative breast cancer, the insane 80% rate of HPV infection among American women. (Can I get an Amen for being in the 20%? Yeah I was that kid in high school whose keys hung on a chain that said “No condom no way.” And yes, there was a condom inside that keychain). That’s why there are outcries against the only cancer vaccine that has ever been developed, because rather than focus on the amazing lifesaving potential, we are wrapped up inside someone else’s panties, worried she’ll do the wrong thing. I’ll say it again: Lenny, you can decide never to have sex in your life, or start having sex when you’re 13, and I will still love you and want you to live. I will not deny you access to Gardasil in order to protect you from your own hormones, your own desire, or your own life. I won’t do it.

Women are sexual beings, with sexual bodies. So are men. But men get to be just that most of the time—men. They are allowed to be fathers, husbands, friends, co-workers. And on the other side, so often, we get to be wombs, tits, hair, battlegrounds for other people’s repression or cluelessness or bullshit.

That’s what I see when I read an article about Komen and Planned Parenthood. I see myself, bald, tired, scarred up and tattooed, with no eyebrows, suffering from sexual dysfunction, walking around the streets of Chicago in my fashionable clothes, ignoring all the assholes staring at me. Walking around. Still alive. Still worth saving.

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!

Day 340: Katy Goes Granola

OK, I will never really be granola, but today I am suddenly inspired to write about the mind body connection. This connection is one of those concepts that they throw at you with a cancer diagnosis as a way to tell you that you can somehow use Jedi mind tricks on your tumors to save yourself. I think that aspect of focusing on the body is actually a mistake, because it masks what we should really focus on when it comes to our bodies. I am going to try to articulate what I mean in this meandering blog of mine.

I had an epiphany today. I decided that my body is amazing.

Don't get me wrong, I have many of the same hangups that all women have about their bodies. I ask Gabe if I look fat before we go out, and especially when he takes pictures for this blog, though I don't obsess about it very much. I wish some things looked different and I would love to be more flexible, have better balance, be stronger. Since basketball was my favorite sport as a kid, I wish I were taller.

But overall, my God, look at what this body has gone through and what it has done and is able to do. I don't just mean cancer, not by a long shot. I mean everything--the allergies, epilepsy, car accident, organ removal, cancer, menopause, chemo side effects. At some point in my life I have lost the ability to do all of the normal things that people take for granted: walk, talk, breathe, eat, have sex, sleep, see, sweat, cry. I have been close to death at least three times: once as a baby when I had a severe reaction to penicilin, once when I was hit by a car, once when cancer was ravaging my body. I've had a gun pointed at my head (I'm not being figuative--a real gun). I've escaped other assaults on my person, most notably when I was a teenager and I learned how to fight with my hands and stay alert to keep myself safe from boys much bigger than me on several occasions.

My body has come through these things. Until now, I have been very focused on what has been taken away, and what could be taken away in the future. I think it is absolutely valid to do that. Now, I know I might be tempting fate by writing about this new way of seeing things just a few weeks before my first follow-up mammogram. I might find out that my body never came back at all, and that cancer has grown and spread inside me. But even that knowledge is not at the top of my mind right now. I am thinking about the weeks I've had, the days, the minutes, when my body worked, when it overcame the things that were put before it. I realize that so many people never know what that feels like. So many people have severe brain damage from epilepsy, die from allergic reactions to medications, never walk again, never recover from chemo or cancer. So many people get shot, beaten, raped. It's unfair on both sides: terribly unfair when those things happen, almost as unfair when others walk away because it makes no sense. It's not something to take credit for, but something to appreciate all the same.

And even beyond those things it has overcome in whatever way, my body has always been marked, and now that is even more true. It is perhaps strange, though it doesn't seem that way to me, that I am not ashamed of that. I have scars, some in very conspicuous places. I have tattoos, and not the kind that you get on purpose. My hips give way sometimes when it's raining. My hair is uncooperative (it's decided to be wavy/curly again all of a sudden. This pixie cut might be hard for me to pull off, but I will try). While I have quick moments where I wonder if I should hide these things, those moments are obviously brief.

I have always figured, correctly I'm sure, that people aren't paying enough attention to me for it to matter if I'm in a wheelchair, if I'm bald, if I look lopsided. Recently I've been realizing that I must have put a lot of people in uncomfortable situations by being bald in public. It honestly didn't occur to me most of the time, however. I just figured no one cared, because there are too many people, too many imperfections, for mine to be that serious. Also, people don't usually notice things in other people that they would obsess over in themselves.

In the past, I don't think any man ever asked me why I have three scars on my belly (gallbladder surgery) or a big scar on the inside of my inner thigh (a wire sticking up in a friend's car when I was a kid) or what the triangle-shaped scar was on the inside of my forearm (a bad burn from an iron when I was 19). Women should really believe what they read in women's magazines. If a man is seeing you naked, that's enough, and he doesn't care about the imperfections, so you shouldn't either. Now the only people who see my cancer scars are readers of this blog, Gabe, other cancer survivors who ask about it, or the other women in the gym, who always look away. I don't feel that I have any explaining to do, but I also don't feel that it's something to flaunt. That's why when people told me I should turn my tattoos into body art, that I should henna my head, I knew I would never do that. I wasn't proud of those things, and I didn't feel the need to draw attention to them. I accepted them, however. The scars, tattoos, baldness, just became a part of my body, a sign of how things weren't working correctly for a while.

It's hard for me to articulate what I am trying to say. Perhaps I should give an example. I have continued to row on the erg once a week, and it is still fairly frustrating and counter-intuitive to me. It is also hard for me to get to practice and to make the time for it. I will stick with it until we go on the water, and then we'll see how long I can keep it up. Today I needed to come home after work so I missed rowing. After dinner I went to a spin class instead. I have been spinning a total of four times in my life now, all in the last few weeks. Those of you who know me know that I don't even know how to ride a bike (don't ask why, but that's on my list of things to do this summer to make up for the lost summer we had last year). After the first spin class, I was so bruised and my crotch and butt hurt like hell from the ridiculously uncomfotable seat. I told myself I would only go back because I've learned that you need to work through those initial pains a few times even if you are going to quit a new workout routine, or you would regret it. And then I learned something.

I absolutely love spinning.

My body has just adapted to it, worked well with it, and it feels intuitive to me. I feel successful with it, rather than frustrated or inadequate. My quads are buff after just these few classes. I sweat buckets in the class, so I just wear bike shorts and a tank top, and when I see myself in the mirror, I see this strangely strong looking person. The instructor today was a woman I have never met. She was ridiculously in-shape, with a six pack, buff arms, a perfectly toned butt. I thought, oh please, this is going to be one of those uber-competitive classes with her yelling at us like a drill sargeant about how pathetic we all are. Instead, she kept telling us to focus on how amazing our bodies are, on all the things our legs and arms can do for us, on how strong and powerful we are. Look in the mirror and believe it, you are doing great, you can go faster, push yourself more, your body can carry you.

I normally hate that kind of shit. But all of a sudden there I was, welling up in the damn spin class, almost shedding a tear of happiness. I thought to myself, it's true. My body has carried me, at least this far, and it's possible that it will carry me even farther. Besides the basics, like walking and talking, I have been able to deliver two babies and sustain them on milk from my breasts for months. Once in high school, when I weighed about 95 pounds, a few of my girlfriends and I lifed a car with our hands, because there was a flat and we didn't have a jack, and it didn't occur to us that we couldn't do it. That story is true. My body has done things that it might not have had any right to be able to do.

And why am I focusing on this now? Lately I've been thinking a lot about my career, about what I do every day. It might be ironic for someone whose brain misfired a hundred times a day to make a career doing research and intense thinking work, but that is the work I have always done. Sometimes I think that when I am deciding what to do--which job to take, what project to focus on, that I have missed the mark entirely. I am a relatively smart person, sure. But the defining thing about me in my life has been this body, this physical self, from the long red hair to everything else that has happened to my body to make me who I am today. Sometimes I think I should just spend my days doing something meaningful with my body, testing out things I might have missed, rather than sit at a desk, but it is hard to retrain yourself in a fundamental way like that.

I say that while I write this blog on a computer on the breakfast bar in my kitchen.

No matter, it's just something that has been building in me so I needed to say it. When I was visiting the oncologist's office last week, everyone was so pleased that I recovered so quickly from chemo. The oncologist himself actually smiled--amazingly--and said, I hear you are doing well. I told him my cycles were back, my menopause was gone, my mastitis had subsided. He felt my breast and said, that's scar tissue. Everything is behind you now. You can enjoy the spring and summer. I said, well, I have that mammogram coming up in a few weeks and that is very nerve-wracking. It's all behind you now, he repeated.

He might be full of it, he could be completely wrong. The P.A. said similar things, and was very happy for me when I told her my libido was back, my insomnia had disappeared. I paid a visit to my chemo nurse, who barely recognized me with hair. When I told her I couldn't believe how fast my body came back, she said, you just didn't have the confidence to believe it.

Now, that has nothing to do with anything. Many confident women who are assured of their own ability to fight cancer and fend off chemo's ravages die, or have debilitating and permanent side effects. The point is, I haven't, and I didn't. My body did come back to me. I wanted to tell all the women in the waiting room, all of them with scarves on their heads, the woman my age with her head on her husband's shoulder while she waited for the surgeon to call her name, the women in wheelchairs, the women who looked sick and exhausted and those who just looked bored or resigned to fate, that you don't know what will happen, don't let anyone tell you what to expect. But if something miraculous does occur and when all of this is over you get a little bit of time to feel your body working, forget all that other stuff and be proud. Some people have health and fitness and attractiveness bequeathed to them at birth. Other people get put through the ringer, disfigured, atrophied, and come out on the other side, at least for a while. Other people don't make it. You can't control which group you're in, but if you're like me and you're in the second category, you get a pass on the sudden sentimentality at the gym, and you get to pass off those tears as sweat.

And I can't imagine that anyone else cares, but I wanted to say this on the record. For thirty five years it's been tested and brought to the precipice, but this body has carried me. It has, I can see that now. All the focus on how you look in your shorts, what hair products to use, how you compare to other people, what a waste of time and energy. I just keep thinking, I do look great don't I? Not for any other reason than this--I'm still here. I'm still here!