Sunday, November 27, 2011

Day 570: For Maggie Daley

Over the last year and a half, a lot of people have asked me what inspires me to write about the random things I write about in this blog. Most of the time, I have no sufficient answer for that question. The real answer is something like, well, I had this rare and aggressive form of breast cancer at a very young age, and there are a lot of things about that situation that piss me off, so I write about them here so that people who are around me on a day to day basis can actually stand me. Sometimes there's that strange, postmodern social media-infused pressure to write on certain days, such as Thanksgiving or birthdays, anniversaries or on Christmas. Every once in a while there's good news to report, such as when I have a clean scan, and I know people who care about me would like to hear that, and I know I will never pick up the phone and tell them, unless they are my mom and my brother.

And even more rarely, something literally inspires me to write, and that's what happened this morning when I was reading a story in the Tribune about how Maggie Daley inspired countless cancer survivors in the Chicago area and elsewhere.

As I said in the last blog, I truly admired Maggie Daley for how she got things done, and how she lived with metastatic breast cancer for over nine years. I admired her long before I had cancer myself. To start, I admire anyone who is married to a public figure and manages to keep their sanity. Mayor Daley was like some kind of God here, and he was an international, not just a local, politician. Being married to him meant that Maggie's life was not her own, no matter how private she was. She seemed so capable of keeping her shit together, developing her own interests and passions, and never making any huge gaffes in the media, which is something her husband was essentially famous for doing.

Then, she found out she had an incurable form of breast cancer, and even that had to take back stage to everything going on with Rich. The media handled things well and supported her immensely for the most part, though strange things happened. I can't count the number of stories that have been rehashed about Mayor Daley crying on camera when talking about her initial diagnosis as stage four, about how he seemed dazed and out of it for a while after he learned the news. The implication is that it is surprising that he loved his wife, that he had feelings. But we all knew that! This is the mayor who turned purple and looked like he would explode during the power outage in the loop back in what, 2000? The guy who had nothing if not emotions. So he really loved his wife and thought it was horrible that she would have cancer for the rest of her life, that she would either presently or eventually suffer a great deal, and reporters act surprised?

We're a strange culture. But let me get back to what prompted me to write. This story in the Sunday paper gave many of the quotes that are now familiar to those of us who have been following the coverage of Maggie Daley's death. They talk about how stoic she was, how she never cried, how she went to a public function the day after she fractured her leg due to the metastisis to the bone, how she kept on going, gave back to others, never complained. The story was trying to convey how inspirational this has been to so many survivors of cancer, especially metastatic breast cancer, and here I was, reading it, getting angry, and feeling like some kind of cancer bitch. I was thinking, what is this telling all of us? That it's not ok to cry, to be weak, to be in too much pain to go out, to hate all the public breast cancer functions? Is a Pollyannish attitude the only acceptable way to live with a horrible disease?

I am sitting in the office of my own house while I write this, honestly afraid that stones might come flying through the window because I just said that in a public forum. I am not saying that I think Maggie Daley's example put too much pressure on the rest of us. What I am saying is this: She was an inspiration, because she remained herself through the whole ordeal. She would not have been able to be the First Lady of Chicago for most of her adult life if she was not positive, modest, charitable, and stoic. She was an immensely public figure, and none of us has a clue how she acted at home, and the rest of her family made sure that would be the case. Maybe she cried all the time. Maybe she yelled at her kids. Maybe not. It doesn't matter. What I would like to take from her example is that it is possible to remain yourself through the crappiest of circumstances. I think most people with chronic illnesses, most people who have suffered in any kind of way in their lives, know this. I just reject the idea that cancer is supposed to make you someone else--even if that someone else is supposedly better than the person you were before cancer.

At the beginning of this nonsense (notice I never say "journey"), I wrote in the blog that I felt guilty that I couldn't be that cheerleader type of person, that I hadn't gotten to that point yet. A few people, who had known me since I was a small child, said variations of the following to me: "Um, Katy, you have never been a cheerleader type. You are a tough and stubborn person. You have a great heart but are not particularly sweet. Maybe we could be those happy cheerleaders for you, because you are probably not going to become one anytime soon." And boy were they right, and I will always be thankful for having people like that in my life.

I am the person who never cries in public, or even in private, because I think it makes me look weak, and I hate appearing weak. But I pulled the tears out, forcing myself to sob, I used the image of a young woman brought to tears to get what I thought I needed--an earlier surgery date, some kind of answers from various doctors who were treating me like a child. I did things that would make other cancer survivors shudder with horror for how backwards I was in my response. At the beginning, I fled from my family, all the time. I left for hour long walks several times a day, missed dinner, couldn't even look at my kids sometimes. I argued with my doctors, acted like a know-it-all (we all should in these situations--you really do know your own body better than any damn expert), ignored all kinds of advice. I didn't think of my kids and how they would feel when I walked around bald. I talked to Lenny about chemo. I thought about leaving Gabe on a few occasions, even in the middle of all the things we went through, maybe because of them. I never took up the habit of talking to friends or family on the phone.

And now, I sometimes feel that I've failed as a cancer survivor, at being the kind of person I am miraculously supposed to be. I am still the hard-ass parent, not the one who rolls around on the floor with the kids. Look, they love me, and they are comforted by me, and they miss me when I'm not here. But I still don't like giving back rubs--Augie asks for one and he gets one, for about two minutes. I am always in charge of cracking skulls around here, and cancer hasn't softened that--not most of the time, anyway. The other day I was supposed to tell Lenny to come inside, since it was dark and she was outside with another, older kid, by herself. I went out and yelled in that oh shit my mom is going to get me voice, Lenny! Come on in...oh well you can come in in a few minutes. I saw her sitting on top of our plastic playhouse in the backyard, with her crush who is five years older, talking to him in the dark. I couldn't make her come inside--I just couldn't do it. I know that she will remember that moment for the rest of her life. I think it's parenthood, not cancer, that has made me a softie in those situations, though.

I don't think I'm much different, and maybe I should be--maybe I shouldn't want to throw Gabe under the bus when he forgets to do laundry or I have to tell him for the millionth time to do some little chore around the house. Outside of manic exercising, which I have done for years anyway just to get some damn sleep, I haven't become a pure-living enthusiast. I've taken to having a cocktail almost every night, something I never did before cancer, maybe out of spite for all the people telling me I'm somehow killing myself in the process. I remember years ago when my boyfriend at the time gave me a birthday card, and it was a picture of a little girl crawling onto the kitchen counter to steal cookies from the jar, looking over her shoulder to see if she's going to get caught. He wrote on the inside of the card: "That's all you, Kate." And maybe it is, maybe it's always been that way with me.

If there was a poster child for breast cancer surviving, she just wouldn't look like me. And yet I feel that Maggie Daley, and others like her, gave me the gift of saying, look, just keep doing what you were doing before, don't let this cancer change you. If you were a stubborn little manic hard-ass, keep it up. It kind of angers me that we collectively assume that cancer made Maggie Daley tougher, that by watching what she went through and how she handled it, she could teach us how to behave. She could teach us how SHE behaved, show us who she was--and she gets the credit for that, not cancer. I daresay she would have been just as interesting and impressive if she had been able to live another twenty years, without cancer. She didn't have that option so she kept on doing her thing. What else can you do? That's just the way it is.

The last thing that drove me to write this was the following part of one sentence in the article I was reading: "Though much of the focus on breast cancer goes to prevention and screening..." Sweet Jesus,can people who write about breast cancer get it together? Unless you call telling women not to get fat prevention, there has been little to no focus on prevention in the breast cancer lexicon. Say it with me: MAMMOGRAMS AND BREAST EXAMS ARE NOT PREVENTATIVE, THEY ARE DETECTION TOOLS. Having the good news from a clean scan does not PREVENT you from having breast cancer, it just means you don't have breast cancer and you should be happy. Feeling a thin hard line in your lactating breast and going in right away to get it checked out, only to find you have three cancerous tumors, does not save you from what you need to do to attempt to eradicate the cancer that through some bizarre, unknown chain of events was already there for years. Perhaps if we understood more about why so many women get breast cancer, and why it turns metastatic in some cases and not others, we could do something about it and bar the proverbial cancer door.

But we don't. So those of us who have had or do have breast cancer, who are early stage or in the incurable camp, really can't sit around wondering why, because it doesn't matter and it doesn't help. We can just do like Maggie Daley did, keep doing our thing, whatever the hell that thing was. Just please give us the credit for it, or the blame, and leave cancer out of the equation. At the end of the day, after all, that's what we're trying to do--leave cancer in the background, and make of our lives something else, for as long as we can.

Thursday, November 24, 2011

Day 567: It's 2011, not 2010, and I'm Thankful

Can anyone take a wild guess as to what I'm thankful for this year? I mean, outside of the things that I and most other thinking people are usually thankful for, including my family, friends, job, roof over my head (and another one five blocks away that we will apparently never sell), etc.? If you're struggling to imagine it, I'll help you out a bit.

I'm thankful to have made it here, first of all. There was a time last summer when I wasn't sure about that possibility. I'm thankful that as far as anyone knows, there isn't any cancer in my body right now. I'm thankful that this Thanksgiving I felt well enough to cook the huge meal myself, albeit for only five people (two of whom hardly eat anything, but one of whom is Gabe, and he counts for at least four), and with only one oven to boot. I was worried about this last part, since I had a double oven in the old house and cooking thanksgiving there was much simpler for the four years I hosted there. I'm thankful my husband and I have had nine Thanksgivings together and that he claims that after all this time he still isn't used to me, he still gets excited just to be around me. I'm thankful that I have been able to see my kids age another year, my son's hair get crazy curly, and my daughter become a geography wiz. I'm thankful that my son is still young and sweet enough, in spite of all his rough, manic insanity, to call to me after I put him to bed: "Mommy--rub my back?" I'm thankful that my daughter asks me to braid her doll's hair, knowing that I am not great at that kind of thing, but wanting to bond with me in some fashion anyway. I'm thankful for the family members who call to say Happy Thanksgiving, and I'm thankful for chic new haircuts. I'm thankful that I am not where I was at this time last year, as evidenced by the picture that you see here: in the middle of my fourth or fifth week of radiation, when my skin was starting to really get pink, in the throes of chemo-induced menopause, with that god-awful chicken little hair coming in and sharpie and tape slapped all over my torso.

I'm thankful, this year, for eyebrows.

So I just wanted to get that out of the way, lest you think I've forgotten how far I've come or what I am aware might be waiting for me again come some future November. It's kind of strange to be a cancer survivor on Thanksgiving. There's this added pressure to be constantly in the moment, to be living living living all the time and grateful. There's this idea that we, the somehow fated ones, understand what life is about, and other people don't. But I think that other people do understand life, and appreciate it, especially at this time of year.

I know I did, I always did. I was always a very content person, perhaps too content even, no world-beater here. I am still that person. If I wasn't sitting here writing this blog I would be lying on the couch with Gabe drinking some warmish champagne left over from our food-coma-inducing meal, with his hand resting on my foot or some other random gesture of married-people affection, unsuccessfully trying to stream the football game that's only playing on the NFL network while the kids sleep peacefully upstairs, and I would be totally happy. I dare say I would be totally happy to do that if I had no reason to sit down and write this blog--I would love that moment, this moment, whether I had survived cancer or not.

I used to complain about small things, I used to be impatient, I was prone to being difficult and stubborn. Full disclosure--cancer didn't make Katy Jacob an easy woman, not in any way. I don't know what cancer made me, or if it made me anything. I am present in this body all the time now, aware of it in an almost painful sense. I'm just not sure that I haven't always felt that way. When I check to make sure no one's looking while I'm on my walks in the early mornings, and I clamber up onto the hillside of some rich folks' lawn and kick the leaves that the landscapers left behind, I am not thinking about cancer. I am thinking about that fall 27 years ago when I lost the ability to walk. I'm thinking about that time as well when my hips ache with the rain, and, I suppose, I now add to that thought the possibility of metastatic cancer to the bone. When I stare at this computer for a long time and don't have any seizures, I'm thankful for that. I don't know if cancer gets the credit for my being happy about how this body works--maybe suffering of any kind would suffice just as well. Maybe we all should be thankful to have suffered, and survived.

I am definitely thankful that I'm not the only one who feels this way, who gets lost in my body's possibilities at inopportune moments. This morning I went to a sold-out spin class, and except for one high school or college girl who was there with her mom, I was the youngest person there by at least five years. I loved spending an early Thanksgiving morning with all of these folks in their forties, looking like they could all kick some twenty year old's ass at any moment. I loved that I could sprint faster than many people, including the teenager, but a woman at least ten years older could sprint much faster than me. I was talking to another woman at the class about how crazy it was that so many people came out for this, and she agreed, saying her husband told her she was nuts for going. I said mine might have thought the same thing, but hey, this is what I do to relax--I exercise. She laughed, this woman who is a six year triple negative, BRCA positive breast cancer survivor who has undergone a double mastectomy and complete hysterectomy, and said "I know that's right. A little time to not have to think about your life, right?"

I'm thankful for people like her, who get it. Sometimes you just want to be at home in your working body, without having to think about it. Ignoring your good health is a luxury that too many people can ill afford. I'm also thankful for little signs, little glimmers of the thing I never talk about with breast cancer, because everyone else does it for me so nauseatingly well: hope. After the class, I dropped my reusable plastic water glass, the purple one given to me by the Lurie Cancer Center at Northwestern, and it broke. Is someone trying to tell me something? Is my time with the purple over? I'd like to think that's what that meant, but shit, a broken glass is just a broken glass, right?

And a happy Thanksgiving is just that as well, my absolute favorite day of the year, full of family, food, and football. This thanksgiving is better than last year's, simply because I don't look or feel subhuman and I am past the uncertainty of the long-term effects of treatment. I could say that I am no longer worried that cancer will return, but that would be a lie. It would also be a lie to say that last year's Thanksgiving was somehow that much worse--it really wasn't. It was still family, food, and football--during cancer treatment. That's a part of life too, for a hell of a lot of people, and nothing to be ashamed of, nothing to will away through our insistence on relativity. The life you have is one to be thankful for, not because it could be worse, not because it might get better, but because it just is. It's the only one you've got.

Happy thanksgiving, everyone.

P.S. And to Maggie Daley, who passed away just a few hours ago from metastatic breast cancer, thank you for almost ten years of public surviving, being yourself, showing folks how it's done. So Chicago.

Sunday, November 20, 2011

Day 563: Flying Home

In the early days of this blog, I wrote about a flight that Gabe and I took from Maui for our belated honeymoon. I described how the plane dropped 5,000 feet suddenly, and that we thought we would die. I mentioned how unbelievable if felt when we landed--and I meant that literally, not in the way that the word "unbelievable" is so often overused. I was telling this story as a parallel to describing how crushed and terrified I was to learn that I needed to have a re-excision, that my margins weren't clear and it was possible that I still had cancer in my body. That blog is still painful for me to read.

This week, I flew for the first time in almost four years. I used to travel a decent amount for work, though as I related in the blog mentioned above, I've always been scared of flying. Perhaps scared isn't the right word--I just don't entirely trust it, and I grip the armrests with takeoffs, landings and especially with turbulence. While cancer might have cured me of my fear of heights (still true--I used to hate looking out the window on an airplane, but I found that to be my favorite part of this trip), apparently the airplane issue is still there. I can't say that I planned not to fly for so long, but life just got in the way of traveling. I was pregnant, then I was nursing, and I had learned from previous experience that I hated flying while pregnant and nursing because it's so goddamn annoying to deal with the airport, security, declaring your milk and trying to explain to an infant where the hell you are. Then, when Augie was 11 months old, I found out I had cancer, and I started on the course of 8 months of treatment. When I got back to work in January, there wasn't much happening that required travel. And with the kids being so little, and us having the option of driving to a beautiful lake house that is both free and appointed with so much of our stuff we barely need to bring anything with us, we've had no motivation to vacation outside of Wisconsin. So it was by accident that so much time passed between flights.

So here I was easing into it with a short flight to Atlanta--or so I thought. Unfortunately, we were flying during a time when Atlanta had tornado warnings, and the winds were so strong that a tree was uprooted from the ground, flew into some guy's car, and killed him. To say our descent was "bumpy" would be an understatement. In fact, the pilot didn't attempt to use those words. He said "our last thirty minutes are going to be rough. Everyone sit down and put your seatbelts on."

If flying alone didn't give me lymphedema, my extreme armrest grip might have done the job. The flight home to Chicago was also "bumpy" due to high winds, but not nearly as bad. God how I hate turbulence. But I learned something from this: the vast majority of people are with me on this, and I am in fact better able to handle it than many others.

I took a cab to the airport with a guy I had met at the conference in Atlanta. We have kids that are the same age, and obviously we are in the same field, so he was easy to talk to; we started gabbing about the long wait at the airport, his dread of the long, non-direct flight back to San Francisco. I told him about the turbulence on the way out, fully expecting him to think I was some kind of wimp. I said, people were swearing and shouting. How does that help? A few people yelled "oh shit!" and I mean look, we were all thinking that, but you're not supposed to SAY it. My cab-mate started cracking up, talking about how scared he would've been in that situation and how he would've wanted to slug the guy swearing. He told me that he hates the small, commuter planes, that he travels all the time and still isn't used to those drops. Our cab ride turned into an entertaining bit of conjecture on the sociology of flying, and I felt strangely connected to him as a result. Then he picked up the tab, I thanked him, and we both got ready to do it again. This time, I sat next to a woman who was much more afraid of the "bumps" than me. Or, at least not as good as me at hiding her fear. She was praying and talking nervously to me. I felt connected to her too, and it made me realize something. It's not the lack of fear that is impressive. It's not even impressive to be afraid of something and do it anyway. It's not bravery to grit your teeth and just wait to land safely. The lesson is, I think, to recognize that almost everyone else is just as scared as you, if not more so (except for those weirdos who can sleep through anything, but we'll leave them aside for now), and that you will feel less afraid if you try to talk them out of their fear. You are not fooling yourself, nor anyone else, in that situation, but you realize this at that moment: the plane will probably land. If in some horrible twist of fate it does not, you will not die alone, and every single other person on that plane will be leaving folks behind that they love and cherish as much as you love and cherish your people.

Perhaps it's the same with cancer. There are too many women with breast cancer; there are even too many who have it too young, like me. But everyone's fear is the same, at least for a time. Some have more to fear, if their cancer has metasticized. Those are the women who are allowed to shout "oh shit!" or take a nap, or have five mini-bottles of vodka, or talk your ear off, or do whatever they need to do. Those are also the women who know, when they look at you or talk to you, that at one point they were like you, and they thought they had beaten it (unless they were initially diagnosed at stage 4). They understand that you understand that you might be them in the future, if that makes sense. We can all see ourselves in each other, for better or for worse. It would be nice to say that we are each going through this alone, and in some obnoxious cosmic way each and every person on earth is going through this life alone, but with breast cancer, it wouldn't be true. One in seven women will fly this plane with me.

The day I arrived in Atlanta, I had to go straight to a three hour meeting, without being able to stop at the hotel. I was exhausted, and hungry. That night I met up with a friend, one of Gabe's closest friends from college, the woman he was hanging out with before he met me for our first date, the one who eventually helped plan our wedding shower. She had a baby about nine months ago, and she and her daughter picked me up at the hotel and took me to get a burger. We had a very nice evening, and talked about all sorts of things. At one point we were talking about friendships and how men seem to have trouble making plans with their friends when they're married, expecting us to do it for them. The conversation evolved and for some reason I was talking about friendships that had been altered by cancer, including one or two where people just seemed utterly unable to deal with--or even acknowledge the reality of--what was going on. And she said, I just don't get it. This might sound bad, but if someone can't deal with it happening to you, what would she do if it happened to her?

This insightful statement came from a woman who told me, right after I shaved my head and asked for votes on my various hairstyles, that I should just go bald, as I was the kind of woman who "could pull anything off and still look amazing." Regardless of the truth of that, these are the kind of people that are worth keeping in your life. Here's the thing: she was right on both counts. Cancer, tragedy, anything that is possible can happen to you and those who you love. And yes, I pulled it off, not because I am amazing, but because I had some bullshit to deal with and decided not to let the focus be on my hair (for once) and it was my prerogative to do that. I pulled off the neon green wig too, and wearing my own dead hair, and these various strange short hairstyles, because damnit I left the house that way and I had CANCER so I get to do what I want with my hair.

I'm glad that I'm writing this blog, and that other people I care about are not. I would rather it didn't exist of course, but in some ways it's easier to deal with your own life because you really don't have any other choice. You might be able to turn a blind eye to someone else's, or wait until things go back to "normal," but you can't do that with your own vessel, your own time. You can't wait to deal with yourself.

Flying brought me into these strange thoughts, but another development has taken them a little further. I mentioned in a recent blog that I've finally received a prescription for physical therapy. Don't get me started on how ridiculous it is that you can have lymph nodes removed, muscles cut, large areas of skin burned with radioactive material that plumps up your skin like a turkey pumped full of hormones, and no one figures you might need physical therapy. Doctors will acknowledge that yeah, you might not be able to lift your arm, but you're fine! I swear it seems like you can break a toe these days and get PT. Anyway, I went in for my evaluation, and I learned some interesting things. I learned that I don't have any range of motion issues that qualify me for physical therapy, but because I still have a high level of pain and my daily activities are affected (daily activities include things like, I have a crazy son who plays rough and accidentally kicks or punches me on that side and I am doubled over; not being able to do push-ups doesn't count), I do qualify for 4-6 sessions. I learned that I have some weakness in my upper back that is probably just due to having a desk job, but that can affect my mobility and pain. Moreover, my main issue is apparently weakness in the chest wall muscles caused by radiation and, get this: It might never get better.

Hearing that actually made me feel relieved. It's not ME, not some weakness or wimpiness on my part, making me unable to do certain things a year and a half later. It's just reality, and we will do what we can to deal with it. I haven't started my weekly sessions yet, but they will mostly focus on breaking up the scar tissue. Apparently being thin is (yet again) a negative in a sense, as I have so little fat on my breasts or my chest that I can always feel the scar tissue, unlike women with larger breasts or more body fat. It feels good to have a plan, and to have some validation that my pain and frustration is based on something real, not in my mind.

It also feels good to find out that despite everything, I'm in pretty damn good shape. After a particularly sweaty spin class the other day, the instructor came up to me and said "you've come a long way since you started--good for you!" I could've taken that to mean that I was a pathetic spinner at the beginning and I've gotten a lot stronger, which is true. But I knew what she was saying--that I've come a long way, in general. That I'm not bald anymore, not completely exhausted from the fatigue that menopause brought me into by only allowing me to sleep an hour a night. I'm stronger, in a lot of ways. After months of avoiding pilates I went to class today and found that I'm actually more flexible than I used to be, though that is definitely a relative statement. The young woman running the class pulled me aside and asked me what I've been doing, because I look so great! And so strong! And I think, she meant, so healthy! So much like a person who isn't dying!

A woman I know from the neighborhood saw me in the grocery store yesterday for the first time since she brought my family dinner while I was going through chemo. She seemed so genuinely happy to see me, and she asked me how I was doing: "So is your prognosis good and everything?" I had to stifle a laugh. All I said was yes, I think I am fine but they need to watch me closely for at least another year or two. That is, after all, the only way to answer that question. If the prognosis is not good, you surely aren't supposed to admit it in the grocery store. I can't hold that against her at all though, as I know she was partly saying, you look so well, I can't believe you ever had cancer. She was thinking, you don't look any different from me. She was thinking that life is sometimes impossible, and yet that doesn't make it less real.

Whenever I hear someone say how great I look, I think about the women who hear the same thing who are not stage one, but stage four. I think about the women who will always have cancer, who will always be cancer fighters. There is no way to tell who these women are--there is no scarlet C, after all, on your forehead. There is also no way to tell if you will be one of those women someday. How can people not realize this? After all, sometimes a thing is obvious--some people with epilepsy, for example, have convulsions in public (as I did, only one time), while others have hundreds of smaller seizures a day (as I did, as well) that no one else notices, and their experience with epilepsy, while different, is still there.

At a benefit for my rowing team a few weeks ago, Gabe commented that you would never know that any of the women on the team had breast cancer; you would never know who was on the team and who was not, if you didn't already know. And that is no more true in that situation, when everyone is dressed up in fancy clothes, than in any other. There are people all around you who have suffered or are suffering, there are people everywhere who have had a hell of a time or are in the middle of their own version of hell, and most people are just not going to let on, they are not going to give you the satisfaction. No matter how things turn out for any of those people, the truth is, they have all come a long way from when they started. What other choice is there in life? The short way is not usually an option. Of course I didn't say this to Gabe. What I said was this: "Well, we're all doing our best with what we've got. What else can you do?"

Saturday, November 12, 2011

Day 555: American Girl

Do you ever find yourself in a situation that makes you ask yourself, how in the hell did I get here? To be honest, I'm in that place all the time. I was definitely asking myself that question yesterday as I tried to wade through the chaos of American Girl Place with Lenny and my mom. Dear God, what a zoo. Though not as interminable of a zoo as I expected, it was still a place I never imagined to be.

See, American Girl Place is really not a Katy Jacob kind of place. I never liked dolls as a kid--well, not baby dolls or little girl dolls, anyway. I was very girly for a few years, when I was six or seven, and I wore patent leather shoes and dresses all the time. But I didn't really PLAY girly. Maybe because my only sibling was an older brother, who knows, but I liked to play energetic little kid games, get lost in my own imagination out in the yard. Then for years I was a tomboy to the extreme. I wore the same ratty sweatpants all the time. I wished I had a boy's name. I had James Worthy and Gary Fencik and Walter Payton posters all over my walls (come to think of it, that doesn't signify tomboyism really, at least not in Chicago). Once in sixth grade my best friend put makeup on me before school and dressed me in a skirt, just like I was a doll. I went to school and boys told me I looked pretty in a surprised voice, and I chased them around the classroom threatening to fight them because it pissed me off so much.

I guess the moral of the story is I ended up somewhere in between. That's a nice perk of being female--you get to try on all kinds of gender roles, and none of it really sticks to you in a negative way--or at least it didn't for me. I think it's very different for boys, who seemingly are always supposed to act like one very specific type of boy--tough, athletic, smart, whatever it is--as long as it isn't girly. Luckily for me--the girl who never cries, who isn't very emotional or sentimental (or at least who wasn't those things before having cancer as a young mother)--married a man who is kind of in between himself. If I can't cry, Gabe can. While he gets wistful and misty-eyed in front of the kids,I can roll my eyes and tell him to get it together. If there's ever a chick flick I want to see, which is a rare occasion indeed, he will go see it with me--because he actually really likes chick flicks. So at the end of the day we seem to cover all the bases, and as parents, I think we show our kids that there are a lot of different ways to be male, or female. You can be bald and beautiful, right? Case in point.

But somehow, some way, we ended up with these gendered little kids. Now Lenny loves to just be a kid--she'll put on a cute little skirt outfit, as she did this morning, and proceed to roll around in the mud, throwing a nerf football through a basketball hoop. She doesn't mind being the only girl at the pirate-themed birthday party. But in other ways, her girliness just confounds me. She's had a few crushes in her not quite six years, and she gets all bashful and bats her eyes and does crazy girly flirty things that I swear to God I've never done in my life, so I know she didn't learn that from me. Just ask her dad, or anyone else I've ever dated. Flirting, what's that? Why would I do that? Augie's such a boy that Gabe even wonders what his deal is. He greets you by screaming: "I WILL SHARK ATTACK YOU!!" and shows affection by punching or kicking. He was pretending that his plastic cup was a BIG DIGGER this morning at breakfast. He's devious and insane (OK, he probably got the deviousness from me). He throws everything--EVERYTHING. He will be sweet and nurturing to his baby doll until something distracts him and he throws her across the room. But not so with Lenny. She just LOVES stuffed animals, and dolls. So I guess that's how I ended up at American Girl place yesterday.

Well, that's only part of the story, actually. My mom has always loved dolls, and she never got to share that with me since I couldn't care less about them. I guess it skipped a generation. She's been waiting five years (give or take thirty) to go to that damn store. So I gave in, made some reservations for tea for the three of us, since I had the day off yesterday. Lenny and my mom were in doll heaven, and I have to say it wasn't as insufferable as I expected. It's always fun to be downtown in the winter, to be amongst all the people doing early Christmas shopping. I can't personally get excited about all the accessories and hairstyles and everything but I could appreciate how much Lenny loved it. Tea was actually pretty good. And Lenny has been attached to her Josefina doll for the last 24 hours. She gave her a birthday party, sang her to sleep, fed her.

The only dolls I ever played with were Barbie dolls, which I loved. Barbie and her friends were teenagers, however. They went to school, drove, worked, went on dates, had sex even (though there was only one Ken so I always made sure he just had one girlfriend--I guess I believed in that message early). I don't know what it says about me that I liked to play those games, but I never liked to pretend to be someone's mother. I don't think it says much, actually. Just like I don't think it warped my sense of self or my body image to play with Barbie. Yes, I get that her dimensions are humanly impossible. But so what? She isn't human. She's a doll. I didn't expect to look like her--she was 12 inches tall and made of plastic, after all. I didn't expect for men to wear permanently sewn-on underwear for that matter either. Suspension of disbelief, people.

So I love that Lenny is so into this doll, though I had real reservations about it. God help me, but my child picked the one historical doll who has the following small detail to her story: her mother has just died, and she spends much of the first several books mourning this fact. Lenny picked the doll for one reason: she is from New Mexico, which is where Lenny's favorite teacher at Montessori was from (she was only there for one year; she left to move to DC with her boyfriend and Lenny still really misses her). The doll also has very beautiful hair and clothes. But still--I had to have this hard conversation with Lenny in the middle of American girl place. Lenny, Josefina's mother is dead, you know, and they talk about that in the book. Is that going to bother you? No, mom. Well, I'm not going to let you read that first book until you're older. We'll pick a different one for now, but let's go check out all the other dolls, ok? I was trying to get her to like the ones from New Orleans that have awesome costumes, the Native American doll, the red-haired, brown-eyed look alike doll. Nothing doing; it was Josefina or nothing. I talked to Lenny about the death thing one more time and she said: "Mom, my Josefina's mother isn't dead. That's in the book. She's not dead because I'm this Josefina's mother."

Well, OK then. But how is that for cancer creeping into the most unlikely places? Let's hope Josefina's mother got shot in a conflict with Americanos or something, lest they give her some mysterious illness that my kid will interpret as cancer. Jesus Maria.

I have to admit that I got a little sentimental yesterday. Not normal-person sentimental, but Katy-sentimental. That just means I thought about things, not that I teared up or anything. I thought about doing this girls-only outing with my mother and my daughter. I wondered if I would ever have the opportunity to do something like that, if I will live to see Lenny reach her maturity, to see her get married or start a family. I know that she might never get married, might never start a family, and that's fine. It's the timeline of it all that was getting to me. When Lenny was four months old, my mom's mom died. We spent a decent amount of time in Lenny's newborn life visiting the hospital, and I know how much it lifted my grandma's spirits to see Lenny. A month or so after Lenny was born we took her to visit my grandma, when she was still well, and she told me this: "I like Lenny. I like her eyes." Now, of course you're supposed to like your great-grandchildren. But you aren't required to see them as people, separate from anyone else, at that age. She did see her that way, though. And I still regret that we never took that four-generation picture of Lenny, me, my mom and my grandma when my grandma was healthy, rather than when she was in the hospital. When we had the opportunity, it didn't seem necessary. Oh, how you never know the things you don't know. You know, it would be interesting to post a picture of my grandma in her youth on here. With my hair naturally curly, I look almost exactly like her; especially since I usually wear her costume-jewelry earrings.

So I think about these things, about what is in store for me, about what I will witness and what I might miss, in the back of my mind while living this full and busy life. I think about how I got to be the kind of woman I am today, and I wonder what kind of woman that really is. Sometimes I wonder how I walked around bald for all those months like it was nothing. Sometimes I wonder how I got to be that person who gave herself a terrible burn with an iron when she was 19 (until a few years ago you could still see a perfect pink iron-sized triangle covering most of the inside of my forearm when I went out in the sun) and took care of the dressings myself. I lived with my mom in her apartment that summer and she tried to change them for me, gingerly dabbing at them, being careful not to hurt me. That's not going to cut it, mom, I told her, and I gritted my teeth, took a cloth and scrubbed as hard a I could, knowing the shock would literally change my body temperature (there's cancer, and there's being temporarily disabled and being unable to walk, there's having epilepsy--and then there's just the thought of being a burn victim, which is one of the only things left that scares the shit out of me). How did I get to be that essentially modest person who nonetheless has posted online pictures of herself half naked and bald with a map drawn in sharpie all over her torso?

Who knows how any one of us becomes ourselves. It's quite a process, a lifelong one, literally. The interesting thing about being a parent is that you get to witness that process from the very beginning. And sometimes, you want to throw up your hands and say, what's the use of trying? Because you know that nothing you did made your kids who they are--there's some aspect of things that is always what it is, that never changes. But all those things about seeing the newness of life through someone else's eyes--it's all true. It's surprising every time, amazing every time. Life is so mundane with small children, and so astounding too. I still get that wistfulness around teenagers, or any young people who are just beginning to become the young adult versions of themselves. I'm sure there are other 36 year-olds who feel that way too, because they are thinking back on their own youth, full of nostalgia and regret. For me, it's all just nostalgia in reverse--will I get to see my kids when they're that age, when they're working through the awkwardness and the rebellion? None of us knows the answer to such questions, and I'm aware of that. But some of us have more reason to ask those questions, and that's just the truth.

Sometimes I am inclined to give myself a huge high five for deciding to have kids when I did. If my life had been different and I had been with the right man, I would have had kids earlier, at 25, or 27. I felt old having my first child at 30, since my parents were done having kids when they were only 24. And yet, I was the first of my friends to have kids. We were so unbelievably clueless, and we didn't have anyone our age to turn to for advice. We didn't have hand me downs, or cousins to introduce to the baby; we didn't know anyone outside of my mom who could babysit, and I'm not lying when I say that neither of us had ever changed a diaper (I always babysat for potty-trained kids). Gabe wanted to wait, I told him that wasn't going to happen. And now we know that if we had waited, it would have been too late. Though I'm sure I could technically still have kids since I have freakishly normal cycles for the first time in 25 years, it's a terrible idea, fraught with dreadful potential outcomes related to hormone fluctuations, changes in the breasts, potential latent chemo side effects. We're done, no matter whether Gabe gets that damn vasectomy or not. I'm over the idea that I don't want him to do it, over the concept that I might die and he should be able to have kids with someone else. The latter is still true, but he is a big boy, so he can make that decision for himself, and I can see that now. I can't feel someone else's reverse regret for him, after all. I've got enough of my own backwards emotions.

Because I am not so good at expressing emotions (I do better with thoughts)--I'm going to post some poems again. I find myself rambling here, not saying what I set out to say. I wrote the first one for Lenny when she was nine months old. I wrote the second one years ago, when I was 19 or 20, for my mom and my grandma (when my grandma died I edited the line about her death). I don't think these are particularly good poems in any technical sense, but they're probably closer to what this American girl intended to say when she sat down at the computer on this beautiful November afternoon. The years just pass and pass, but my mind retains these same thoughts, these identical reflections, as if everything just happened or hasn't happened yet. So enjoy, or ignore, but here are some of those thoughts:

First Winter

No one ever told you what lies beneath
the most beautiful days.

In the whole of your life
no one ever told you about the
heavy sharpness of white lace ice,
the glare in your eyes that you will miss after the melt,
the implied noise just before the branches crack,
the danger and perfection all mixed together.

Remember that I will always remember your tiny hand
curling up to a soft white leaf, which cracked and fell at your touch.

If I could, I’d give you this gift,
this day, a postcard you are too young to receive.
I’d vanish into you
so you could see how you smiled.

Understanding Women

I don't know how to explain it.
I've been told so many times that
crocheting is easy. You see,
these pot holders, these slippers--
they practically make themselves.
So why does the yarn do nothing in my hands?
Why, in my mind, is there only
a blunt hook, awkward fingers, endless string?

My grandmother tried in vain to teach me
her various arts. What could any of us expect?
My mother, her own daughter, can barely thread a needle.
Instead, when she gets nervous, she attacks.
Everything--the floors, the windows, the car, the damn laundry.
Some women cope by being obsessively productive.
In spite of everything, I know
there is at least bravery in that.

And when I am older and times are still so hard,
I know that I won't find consolation
in quilting or making rag rugs.
I don't have any idea how to stitch together
every piece of our female lives:

What we have grown out of,
what we like to feel, what we think is pretty,
what we'd like to forget, what we include in order to remember.
I'm not a good plumber.
I don't understand carpentry. I hate to dust.

My grandmother is gone, my mother will be one day.
All I will be able to do then is what we have always done:
Survive, and keep their names.
I will only have the ability
to look at the furniture, hand-stripped down,
run my fingers across impeccable wood,
fold the quilts delicately, try to match
the million-colored rugs to each room, and remember.

We are all good at something,
and we all have our ways of trying not to die.
I wrote this for you.

Wednesday, November 2, 2011

Day 545: Looking Good

I fully intended to blog about my second post-cancer follow-up mammogram yesterday. However, after spending five hours at Northwestern doing the damn test, then waiting for the surgeon and then the oncologist, I decided to do more productive things instead. So I went shopping, and then I had a beer, and then I took a walk.

Because it was normal.

Well, not normal in normal people language. The box for "no abnormalities detected" was not checked. I got the "shows findings that are probably benign" situation that means look, you had breast cancer so your breast is abnormal, but in the grand scheme of things it looks good. I can't really tell you how relieved I felt, but this is my blog so I'm going to try.

I think that the results from yesterday's test answered the soul-searching questions I was asking in my last post. I felt physically relieved--I felt like I could breathe normally again. I had no idea how scatterbrained I had become, or why, how distracted I was from the rest of my life for the past several weeks. How I held it together like a somewhat normal person for my kids for Halloween is beyond me. I did kind of lose it when they came in after Gabe took them trick or treating on the second block (we went with the kids from the old block first--how about our Wizard of Oz themed costumes, huh?!). I was yelling about dinner, scrambling around doing dishes, altogether acting pretty manic. Now that's not entirely unusual for me, but I was taking it to another level. The kids were so high on sugar I don't think they noticed, or at least that's what I'm telling myself.

I was so out of it that I forgot about a conference I was supposed to attend a few weeks ago. Luckily it was local, and I remembered a few hours later and I didn't miss much. I was a complete mess at work and at home; I was doing writing projects in a half-assed way and even screwing up the damn laundry. It was like I was living that dream where you show up naked at work or forget to take your final exams in high school. Except this was real. I've never been like that! But today, my productivity returned, my memory seemed on target, and I felt more like myself. Maybe not entirely like the old Katy, but who was she anyway? Some crazy lady who never knew how to sit down. I'll always be that human version of a Jack Russell terrier on some level--little and crazy and hyper. I'm just not usually so incompetent, so let's hope that part is over.

The process of getting a mammogram is complete bullshit, if you ask me. It's terrible for anyone, but if you've had cancer it's a nightmare. Why don't they let your husband (or mom, or friend, if it's an issue with not wanting men in the waiting rooms with women in their gowns) wait with you? And why does the test have to be so incredibly painful? This time I only had to have the left side scanned, and until about two hours ago--36 hours after the scan--I still had red marks where the machine had crushed my breast and my breastbone. You have to love a test where they say things to you like "now this one will feel like it's crushing your back." "Now this one will feel like an extreme weight on your chest wall." When they got to the scans that were imaging my tumor site and scar tissue, tears sprang to my eyes. She didn't need to tell me to hold my breath; that was involuntary. I have so much pain there anyway (my surgeon finally gave me a prescription for a physical therapist so I can work on the pain and weakness that I still have on the left side of my chest and my arm); and I have a VERY high tolerance for pain! Ugh. Someone needs to figure out what a similar test would be for men (read: testicle-crushing vise) and then we could see whether mammograms as they are today would be the standard of care. I think we would be headed for the painless 3d ultrasound.

So you wince and grit your teeth while the technician moves you into ungodly positions. Then, you finish, and the woman (I can't imagine a man doing mammograms, even though I never feel that gender matters in medicine. But it's such a violent test with a woman contorting and smashing you that it would seem obscene with a man doing it.) tells you that you need to wait for the radiologist to decide if more pictures are needed, and what the results are. In the meantime you have the following text exchange with your husband, who has been a nervous wreck himself:

K: Done but waiting for results
G: OK. I don't understand why they don't let me be with you. How terrible was it?
K: Hurt pretty bad but it's over
G: I love you. I'll see you soon and you will be fine. I hate the wait as much as you do.
K: You could probably come back it's waiting room C&D (I thought they would allow this since a woman was accompanying her mother, but that was because she didn't speak English. Gabe was ultimately denied entry to the waiting area).
G: OK I'll ask up here
K: Results back I'm fine!! Getting dressed
G: Thank goodness! They won't let me back there so I'll meet you at the doctors waiting room

And that sums it up. The technician had told me that I only had one more six month follow up before I go to annual scans. So look out May 8, 2011. That will be an important graduation for this triple negative girl, who is at highest risk of recurrence in those two years.

I was so relieved and happy when I saw Gabe that I couldn't stop talking. We had all kinds of annoying waiting to do for the other visits, but damn. It was crazy how I suddenly felt like myself, suddenly felt hungry even, how I could tell myself that maybe I might make it out of this mess after all.

Of course, truthfully, for someone who is triple negative like me, I might be more likely to have cancer metasticize than recur locally. But as long as I don't have symptoms of that, I am going to try not to think about it. I kept asking doctors why they aren't doing ultrasounds of my breasts, given the problems that mammography presents for young women/women with dense breasts. Their answers were long and actually satisfied me for a change. The surgeon thought everything looked great, and we talked a little bit about my bout with mastitis. Is there anything that can be done to avoid that in the future? No, not really. A bug bite can cause it. And mouth to nipple contact can cause it too (she said, purposefully NOT looking over at Gabe) so you should concentrate on the other side for that. Right, I said. We got that message loud and clear.

She sent me on my way and I went to the oncologist. Check this out...I actually made the guy laugh. I didn't think that was possible. He shook my hand and asked how I was doing. Great! I said. Well, I'm sick, but otherwise great. He thought this was hilarious. You feel good since it's just a normal sickness, huh? You got that right, brother. He has been growing on me since I've finished chemo. I think his complete lack of human emotion is absurd, and obnoxious when you are dealing with something as terrible as the effects of cancer and chemotherapy, but when you're happy with your test results and you don't need anyone to be understanding, the stoicism doesn't offend so much. He did his exams, undressed me from my gown like always, asked his questions, and surprisingly, answered all of mine. Then he said his normal parting words: You look good. You look really good, especially from a cancer perspective. Enjoy the holidays. You look good.

I heard that, doc. I wanted to say, what do you mean, especially? Weirdo.

I visited my old chemo nurse afterwards, before I headed over to the mag mile. I don't know why I still feel the urge to do that. I have had doctors who have saved my life, helped me walk again, delivered my baby, and I had no desire to ever see them again. But my chemo nurse, and my ob/gyn, are exceptions. I think I just like them, as people. I like to see her, to let her rib me about thinking I would be bald and in menopause forever. But god is it weird to be in that chemo area, listening to the sounds of the machines, hearing the beeps that tell the nurses to increase the saline solution, watching them tap arms, patiently trying to coax the vein out, seeing the women who are cold and bored and sometimes alone and there are so damn many of them, in just that one floor of that one hospital. What bullshit.

Then after Gabe got home from work I started texting teenagers from the neighborhood. I decided we just had to celebrate. Ultimately one of the girls next door came over, and we went to greektown for dinner. I got a huge martini, as you can see. While driving over we realized that the kids had been looking at photos with the babysitter, and there were a bunch in there when I was bald. There was even one the kids weren't supposed to see, of my bruises after surgery. I thought holy shit, I don't think she knows I had cancer! Well, Gabe said, she knows now. We asked her about it when we got home and she played it off like she knew already. Good god, the things I put these kids through. Isn't it bad enough that Gabe gives me those sappy puppy dog eyes in their presence? Then they have to sit there while Augie points out "that's my mommy!" in a photo of a woman with no hair to speak of, until he goes onto the next one: "Daddy kissing mommy!" and again, there's Gabe kissing my bald head. I was loving all the teenagers last night though as I looked for a sitter at that extreme last minute. How great is it that we live in a place where a 17 year old texts me she'll be over in 15 minutes after I ask her to babysit RIGHT NOW, and she puts her slippers on and knocks on our back door to come in? Because let me tell you, last night of all nights, I needed to celebrate, and I needed a drink!

Those who are friends with me on facebook probably saw my rant about the new study saying that moderate alcohol use can increase breast cancer risk. Jesus Christ. Has there ever been a study done on a woman's health issue that DIDN'T try to blame her for her disease? And further, that focused on the so-called sin issues? Shouldn't everyone try not to drink too much, exercise, and eat right? I'm waiting for the study that says: "Save yourself for your husband, or you might risk contracting breast cancer." Or "honor and obey or you will surely get invasive ductal carcinoma" or just "be a good girl or you will get breast cancer!!" I mean shit, you have 30 years to study this disease and that's the best you can come up with? Couldn't you study the environment, additives in food, effects of birth control, or something? And how do you explain the lower rates of breast cancer in countries like France where women drink EVERY DAY?

Can't drink, can't smoke, what can you do? Must exercise like crazy, must go vegan, yadda yadda. I was healthy, and skinny, and nursing, and I was never much of a drinker, and I got breast cancer. A really aggressive kind of breast cancer that was probably predicated on something else, other than lifestyle factors, entirely. So just let me live my life, let a girl have a little vice. I've been hearing this song my whole life. I know there are certain things that trigger seizures, for example. I know that strobe lights are bad for me. But the number one thing that triggers seizures is being unlucky enough to have epilepsy. "Normal" people do not start having seizures from strobe lights, or video games, or roller coasters, or because of insomnia. Sometimes shit happens. Study that phenomenon, perhaps. It would be just as useful, in my opinion: Medical team spends 30 years researching life cycle phenomenon and concludes that shit happens, all kinds of shit, and you just have to deal with it and live your life anyway.

I'll drink to that! Right now, things are looking good.