This is my third Valentine's Day since being diagnosed with breast cancer. I've never written a Vday post before, because there's not a lot that the holiday has in common with cancer. I've done my share of writing about how cancer affects marriage, sexuality, and romance.
I'm essentially lazy these days, so I ordered my husband some chocolates, which I have enjoyed as much as he has, and I bought him the one card I could find at Walgreens that didn't suck. And I wrote him this. Happy Valentine's Day, babe. May we always remember the various ways that love shows its face. Oh, and for those who are concerned about what I wrote in the last post, my boobs seem to be calming down these days, and I don't anticipate needing to go to the oncologist anytime soon. And that, my friends, is a good Valentine's Day present.
Summer Love
by Katy Jacob
In the heat, I stripped off my clothes.
You stood behind me,
touched my face, bent over me, got to work.
The kids slept soundly upstairs.
We were alone together,
in the basement, in the bathroom.
Underground but the humidity still seemed to rise.
Even the mirror began to sweat.
I stared straight ahead
at our reflection, an image of ghosts.
You couldn’t help but cry.
Lost in ourselves, a series of vignettes:
You reaching for
a disposable razor and
a 79 cent can of shaving cream.
My eyes getting bigger,
if only in comparison.
Heaps of hair on your arms,
on your shirt, covering the floor.
The virgin skin of my scalp
unmarred by nicks, or blood.
The small clock laboring in the
slow motion eternity of its ticking.
The midsummer darkness descending.
If I were to write a poem,
I would include these details.
But were I to grow old,
I would remember only this:
Your perfectly steady hand,
being as careful with me
as if I were your child.
Showing posts with label marriage. Show all posts
Showing posts with label marriage. Show all posts
Thursday, February 14, 2013
Monday, November 26, 2012
Day 886: S*** Moms with Cancer Say, Part Two
That's a bunch of crap.
I've said it before--I'm an impatient person. It's entirely possible that cancer has made me less patient, not more, but we will never know, will we? Because this is the only Katy that there is. I started thinking about how we might have some slightly altered conversations at my house the other day, when I got pissed at Gabe for forgetting to feed the kids any lunch on Thanksgiving. I was cooking for two days, and then I went for a walk, hoping they would have had a snack by the time I got back. I even reminded him about it before I left. But no, they were all too busy playing outside. I know I should have been basking in the post-cancer bliss of appreciation for the beautiful weather, but instead, I was annoyed by how hungry they were just an hour before Thanksgiving dinner. So I said this:
I have been cooking for two days. You are NOT eating right now. You will just have to be hungry until dinner. OK, fine, you can have a banana--but that's IT. Your DAD was supposed to REMEMBER to feed you. (Turns to guilty party). Jesus Christ honey, how can you forget to feed your own children? I mean, WHAT WOULD YOU DO IF I WAS DEAD?!
After the look Gabe gave me for that one, I thought it would be worth sharing some other gems as an addendum to the first installment of this, written almost a year ago:
What do you MEAN you don't like this dinner? Do you understand that this food is absolutely DELICIOUS (shoveling food into mouth, so glad to be able to taste it and keep it down)? It isn't a requirement that food taste good you know! YOU STILL HAVE TO EAT IT!
You're awake because you're having nightmares about a dog getting bitten by tics? Well, you know, that's not so bad. I'm sure the dog will live. We all need to sleep now.
You injured yourself? Are you bleeding? I'm sure you'll live.
So you have injured yourself and it's just bleeding a little? OK let me get a bandaid. You'll live. Tell your dad if it gets worse, because I'm going to the gym.
No, I don't remember when the dinosaurs died. None of us remembers that. No, we were not zero, we were nothing. Humans didn't exist. Do you want some raisins?
Yes, your dad and I are going out two nights in a row. We still like each other and life's short.
No honey, I don't really remember when you first learned to walk.
I'm going to the doctor. Jeez, kiddo, it's only a checkup. DON'T WORRY ABOUT IT!
Yes, Daddy is having surgery. What's the big deal? Lots of people have surgery. Why do you need to know why? Wait, why are you crying? Oh shit it's just surgery so we can't have any more kids! There's nothing wrong with him! Why is he doing the surgery and not me? Well, I've done enough.
Look whatever your name is, you had better listen to me!
Lenny, if you don't take care of your hair, we are cutting it super short. These tangles are ridiculous. Augie, you will just have to put up with people raving about your curls all the time. You both know something they don't know: IT'S JUST HAIR.
Don't fake cough at me. Pretending to be sick isn't funny.
So I see that your favorite stuffed animal right now is a demon with a pitchfork. What's his name? Little devil? Cute.
Yes, I see that your brother has grabbed onto your leg and won't let go, and you look pretty annoyed about it. Go ahead, hit him a little. You told him to stop at least five times, and you're pretty strong. Use it while you've got it.
Are you really going to keep using that pacifier? You know what, fine. I'm not going to stop you.
Yes, everyone dies. Hopefully not any of us anytime soon.
And then there are all the silences, the times when I don't say anything, because my kids ask me about what they will be when they grow up or where they will live or they talk about getting married, not even really knowing what that means, and I just slightly turn away. Still wondering whether I'll get to see any of that. Still a sucker for Augie's go-to strategy for getting out of trouble, even when he breaks a vase that held branches of the pussy willow tree from my dead grandmother's garden and it came down to me to discipline him. He sobbed, asking, "Is it going to be all right?" And I said No, the vase won't be all right. It's broken forever and you need to apologize and listen when we tell you not to do things, like throw stuff in the house. You might need to use some money in your piggy bank to help replace it.
And then he looked at me with those big brown eyes, asked, "kiss?" and grabbed me by the back of the neck and swooped in like he always does, something I'm sure he learned in one of his past lives, and because he believes that this fixes anything and I don't really believe I'm in a position to argue, I responded: And yeah, in general? It's going to be all right..
This photo was taken 10 days before my cancer diagnosis.
Monday, October 29, 2012
Day 858: Disaster Drills
This storm, this Sandy, is obviously something else entirely. It is the thing everyone is talking about, the thing that matters for us right now. These are the types of disasters that keep everyone in rapt attention, including me. But there's something else I feel about them as well: fascination.
No, I'm not a weather geek. That's my daughter. She tells me every morning, after reading the weather page in the newspaper, about various random weather facts: what time the sun will rise (mom! it's going to rise at the exact same time that the bus leaves for school! isn't that cool? Um, sure, honey...), what the weather is like where various relatives and friends live, the records that have been set, the types of clouds.
It's hilarious to have a little meteorologist in the house, but that's not what gets me about these things.
I am completely fascinated by the human element; not just the suffering that I hope people don't have to endure in too great a measure, but the social aspect.
What does that mean? Well, some of you know that I have a masters degree in urban planning and policy. I've never actually planned urbans; my career has rather been very policy-based, but the whole notion of what happens with social norms in an extreme event, and how human beings manage large institutions, is fascinating to me. So they are evacuating large parts of Manhattan and other big cities on the east coast...at the same time that they are closing roads and shutting down all forms of transportation. Now I am not saying that those are bad decisions. I'm just SO CURIOUS about how everything will turn out, how folks will try to make order out of chaos if it comes down to that. Because usually, that is exactly what most people do. People WANT order. A few of the proverbial bad apples might loot, or cause mayhem, but for the most part people do band together and try to find their way out of the mess. And I sit there and wonder...why? And how?
I read all the books about major disasters--shipwrecks, factory fires, floods, you name it. The parts I find most interesting have to do with arcane things like codes, or the lack thereof, or how such events led to stronger labor laws, or tidbits about why Chicago is one of the only places in the world to have so many buildings made of blonde brick. Of course the human interest aspects touch me, and who could not feel pain in the face of such tragedy?
But something about what comes out of it is just almost thrilling to me, no matter how strange that sounds. I guess everyone reading this knows that I'm not a normal person by now anyway. I'm that girl who knows all about how payment systems failed following Hurricane Katrina, the one who went by herself, while pregnant, to see a movie about how black communities were decimated from a cultural standpoint (huge amounts of lost jazz photos, public squares that served as community centers and were never re-opened, musical communities that were lost forever) from the same event. I'm the one who chooses books about genocide for book club. There are reasons for this that come out of some very strange and specific aspects of my upbringing; the details are related to a rather involved family history as well, and it is too complicated to get into here. The point is that I seek out information about these kinds of hells on earth.
Hell, I do this even when it doesn't make sense for me to focus on the macabre. When I was in the hospital suffering from that damn chemo-related temporary heart condition, I got a phone call from a friend in Seattle. She might have been the only person who wasn't related to me who called me. And she wanted to let me know that she had seen a book in the store that made her think of me, and she was going to send it to me, because she thought it would make me feel better.
It was about reconciliation policies in Rwanda.
I shouldn't have been surprised. We used to go to the beach together and lay there sunbathing while reading books like that. And of course she was right--that was just what I needed. I feel a very strong desire to find out about things that are very disturbing, because I feel that we fail each other if we do not bring them to light.
I have not been shy about admitting to my social justice-orientation to the world. What's strange is how I think about it all the time--justice with a big J. Justice from a human rights perspective--that's really what I should have focused on in my career. In a way, I did, as financial justice is one part of the whole. But sometimes I look at the state of women in the world, or just in my own backyard, and I can't believe that I don't do something related to that for a living. I think about slavery--current-day slavery in addition to all the different past iterations of the same. I know more about every genocide that has ever happened than most sane people would care to even contemplate, and then I sit there at night and am haunted by thoughts like this:
What about all the genocides from throughout history that were truly successful? The ones that wiped populations out so completely that we don't even know that they ever existed?
And then I think, now, why would anyone want to read what I have to say about my life, which is so small? On the one hand, I write about the disturbing things that many people don't like to give voice to in relation to cancer, disability, sexuality, and even death. On the other, well, my life is pretty damn good. And even when it's hard, or has been hard, in some ways, I've been prepared for it. I've been giving myself disaster drills my whole life, wondering when the other shoe was going to drop and what I would replace it with, looking over my shoulder and wondering where the getaway car was, modifying things, cheating death.
And yet I have never been very serious, except maybe here. I'm just too inherently content, albeit pissed off, most of the time. So my mind is filled with this big stuff, and sometimes my life is filled with this small stuff.
What I was going to write about was this: This weekend, Gabe and I went to the wedding of his oldest friend. We went to lots of weddings about 7 years or so ago; we got married 8 years ago and were one of the first among our group of friends to do so. But now we're at the point where people are getting divorced, not married. So I don't often have an occasion to dress up too much. It took me a while to pick out a dress, even though I have a lot of cute ones.
Gabe helped me decide on a fairly slinky black number. I remember very well the last time I wore that dress. It was actually for the last wedding we attended--about two and a half years ago, exactly four days after my cancer diagnosis. Before the wedding, we took this picture that turned into one of Gabe's all-time favorite pictures of me. Later, we did a split-screen shot of that picture with one he took of me right after he bic'd my head, so that he could show me that I looked the same (I didn't see it then--though I do see it now). And I was just so lost, so grieved, so unsure of what my future would hold or if I would even have much of a future. I cried at the wedding, I cried after the wedding, I was sad about everything. I could hardly eat my chicken shwarma after we left the reception because I just couldn't talk to people. My husband held me while I cried in the restaurant, and the woman behind the counter pretended not to notice. The next day, I wrote what turned into what I still consider to be one of the saddest, most difficult-to-read blogs in the two and a half year history of this thing. It was my first Mother's Day post.
The ceremony was very simple and touching. I teared up a bit, thought about beginnings rather than endings, and smiled. We had time to kill before the reception. We went to a few shops in the suburban downtown, then went to the bookstore. We could have gone to a bar, I suppose, but I guess we're nerds. Then we headed over to the reception; Gabe knew some people, though I really didn't know anyone else.
And I didn't care.
Damn did we have a good time! So much food and drink, and new people to meet. And then...the dancing. Now. Gabe is one of those people who claps on one and three. He has NO rhythm. And while I DO have rhythm, I haven't been much of a dancer for years, for some reason I don't really understand myself. I used to go clubbing in high school (all ages night--a euphemism for underage girls welcome so grown men can try to get with them!) and in college, at least for my first year or so. At some point I became more self conscious; I didn't like getting any attention at clubs, and I didn't dance as much. For years I dated a man who danced with me in the kitchen of my apartment. We were too broke to go to the club, and that was more fun anyway. Gabe and I took some ballroom dance lessons when we first got married, and mostly it just made us frustrated.
That was it--I was going to write about that. About that moment I couldn't see two and a half years ago when I went to a wedding wearing a tight black dress, when I would be happy, when I would weigh a few pounds more because I wasn't too anxious and terrified to eat, when my hair was pointless, and I wasn't thinking about the death part of till death do us part and I could look back and know that when illness and suffering happened, we would make it through.
It just doesn't seem that important, though. Life is both a tragedy and a comedy. It is big and small. There is always something more joyous happening somewhere else, and something more horrifying. The horrifying is the only one worth worrying about, because it can provide some perspective and help us to help others through the world. And life is also, for me, a story.
Some wonderful stories are born of real tragedy. And you all know that I read the last line first, lest I don't make it to the end. This is why I sometimes don't know why I say things, because what I wanted to say has already been said, often so well that it isn't worth trying to beat:
the last lines of The Bridge of San Luis Rey by Thornton Wilder:
But soon we shall die and all memory of those five will have left the earth, and we ourselves shall be loved for a while and forgotten. But the love will have been enough; all those impulses of love return to the love that made them. Even memory is not necessary for love. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.
Tuesday, October 9, 2012
Day 838: What is That Like?
So, it's still October. That means that it's still the time of year when people should be preparing their inappropriate Halloween costumes and finding yet another way to make trick or treating less fun for kids, but in addition they are buying pink and talking about how important it is to save the boobies.
Those of us who have at least temporarily survived breast cancer who have a voice in the universe, no matter how small, use that opportunity for different purposes. I'm going to use mine this October to continue hammering some things in about what it is really like to have breast cancer affect your life, your likelihood of getting old, and everything else. This time, my message will be brief.
Here are a few small, everyday examples of what it means to be a young breast cancer survivor, from a few different perspectives:
Your mom obsessively reads your blog posts, probably clicking several times a day if nothing new shows up, because she knows that is the only way that she is going to learn what you are really thinking. She has been on hormone replacements for menopause for over twelve years, and yet it is YOU who had breast cancer. She would like to trade places, but she can't. She often asks how you are doing and sounds a little bit panicked each time. She is completely convinced that because you had stage one cancer and did extensive chemotherapy, that your cancer will never return. She hates when you remind her how easily it could return, and always asks the same thing when you tell her about another woman with early stage disease that later metastasized: Was it in the lymph nodes? She no longer worries about getting breast cancer herself, no matter how many aspirations she endures for issues in her breasts.
Your older brother checks the blog often too, and always reads it. He never says anything about it, no matter what strange or uncomfortable thing he has just learned from his over-sharing little sister about her marriage, her teen years, or her body. He asks you if he should donate to certain races or causes when he is asked to do so, wondering if somehow that would offend you. He is back to calling you once in a blue moon when something needs to be decided, but you both remember when he used to call you every day because he liked to hear your voice and know you were still there.
Your husband carries many things within him that he will never be able to discuss with other men, even if they ask, which they don't. He doesn't really want to go to cancer-related events with you, because it is hard for him. This makes you angry with him. He says he would like to act as if the whole thing never happened and you say that's nice, I wish I had that option, knowing that of course he doesn't have that option either, but that he WISHES he did. He jokingly offers to shave the teenage babysitter's head for her if she decides to go that route, but he doesn't really think it's funny. He researches things online and doesn't tell you about it. He cries more than other husbands. You wish you had more patience for all of this, but in fact, you have less.
Your son asks about death a lot, because he is three, and some three year olds do that. He knows you can die from being sick. He wonders if this will happen to him. He says, but you only die if it's a really BAD sickness, right? And your six and a half year old daughter chimes in: No, you don't always die even from that. Mom had cancer, and she didn't die, and cancer is really bad. He nods his head in ageless understanding, and this idea comforts both of them.
Your friends often act as if nothing ever happened, just as your husband would like to do, and that is both good and bad. Sometimes they say the wrong thing, and you always let it go. Sometimes they say the right thing, and you appreciate it greatly: You know, you would have had cancer whether or not you decided to write about it. So, I can honestly say that I like your blog.
You write a blog, because really, what else can you do? You did all the right things in the first place. You have survived for not quite two years past treatment. You hope there is much, much longer to go. You know that no one knows how long she has, but you also know that there are many, many things that have happened to your body that make your chances for a long life slimmer than other people your age. You still love October, even though it marks the anniversary of one of the worst things that has ever happened to you, and is being used to remind you incessantly of one of the other ones. You have cheated death four times.
You are tired of it.
Those of us who have at least temporarily survived breast cancer who have a voice in the universe, no matter how small, use that opportunity for different purposes. I'm going to use mine this October to continue hammering some things in about what it is really like to have breast cancer affect your life, your likelihood of getting old, and everything else. This time, my message will be brief.
Here are a few small, everyday examples of what it means to be a young breast cancer survivor, from a few different perspectives:
Your mom obsessively reads your blog posts, probably clicking several times a day if nothing new shows up, because she knows that is the only way that she is going to learn what you are really thinking. She has been on hormone replacements for menopause for over twelve years, and yet it is YOU who had breast cancer. She would like to trade places, but she can't. She often asks how you are doing and sounds a little bit panicked each time. She is completely convinced that because you had stage one cancer and did extensive chemotherapy, that your cancer will never return. She hates when you remind her how easily it could return, and always asks the same thing when you tell her about another woman with early stage disease that later metastasized: Was it in the lymph nodes? She no longer worries about getting breast cancer herself, no matter how many aspirations she endures for issues in her breasts.
Your older brother checks the blog often too, and always reads it. He never says anything about it, no matter what strange or uncomfortable thing he has just learned from his over-sharing little sister about her marriage, her teen years, or her body. He asks you if he should donate to certain races or causes when he is asked to do so, wondering if somehow that would offend you. He is back to calling you once in a blue moon when something needs to be decided, but you both remember when he used to call you every day because he liked to hear your voice and know you were still there.
Your husband carries many things within him that he will never be able to discuss with other men, even if they ask, which they don't. He doesn't really want to go to cancer-related events with you, because it is hard for him. This makes you angry with him. He says he would like to act as if the whole thing never happened and you say that's nice, I wish I had that option, knowing that of course he doesn't have that option either, but that he WISHES he did. He jokingly offers to shave the teenage babysitter's head for her if she decides to go that route, but he doesn't really think it's funny. He researches things online and doesn't tell you about it. He cries more than other husbands. You wish you had more patience for all of this, but in fact, you have less.
Your son asks about death a lot, because he is three, and some three year olds do that. He knows you can die from being sick. He wonders if this will happen to him. He says, but you only die if it's a really BAD sickness, right? And your six and a half year old daughter chimes in: No, you don't always die even from that. Mom had cancer, and she didn't die, and cancer is really bad. He nods his head in ageless understanding, and this idea comforts both of them.
Your friends often act as if nothing ever happened, just as your husband would like to do, and that is both good and bad. Sometimes they say the wrong thing, and you always let it go. Sometimes they say the right thing, and you appreciate it greatly: You know, you would have had cancer whether or not you decided to write about it. So, I can honestly say that I like your blog.
You write a blog, because really, what else can you do? You did all the right things in the first place. You have survived for not quite two years past treatment. You hope there is much, much longer to go. You know that no one knows how long she has, but you also know that there are many, many things that have happened to your body that make your chances for a long life slimmer than other people your age. You still love October, even though it marks the anniversary of one of the worst things that has ever happened to you, and is being used to remind you incessantly of one of the other ones. You have cheated death four times.
You are tired of it.
Sunday, August 26, 2012
Day 844: The Puking Post
There comes a time in every woman's life when she realizes that it's not all giltz and glamour. For example, when she gets really frustrated driving through awful rush hour traffic with her children in the car on the way to pick her husband up from work so they can all get a jumpstart on the last vacation of the season. It's a gamble, really, because her three year old son had had a mysterious rash the day before that led to him being sent home from school, and her husband had taken him to the doctor, only to be told it was probably allergies, due to the melon they had thought he could eat after all but apparently…he could not. His entire body was covered in hives, but then, they went away, so on the family drove.
After that fight she got in with her husband due to the annoyance with traffic, the drive was smooth, albeit long. She decided to stop at an actual restaurant rather than the same Wisconsin fast food chain that the family always patronized solely due to their corporate policy of placing changing stations in the men's rooms. Oh the freedom of ordering from a menu while sitting down! And yet the three year old wouldn't eat--anything. He was out of control. She herded everyone back into the van, and soon he started crying, claiming "it hurts where I eat." So she stopped at a gas station, looked in his mouth, and his throat was red and inflamed, so she bought cough drops, which he wouldn't touch, and called the doctor, who thought he might have strep. So the next step was to try to find a Walgreens in Green Bay, so the poor kid could have antibiotics if he needed them, as the closest pharmacy to the lake house was 35 minutes away and closed on weekends, and they had gone too far to turn around and go home. Somehow the family found the place, and the prescription was miraculously there, but it took a long time to get it filled. As she waited at the counter, she turned around when she heard a familiar voice and there was her family. Why are they out of the car?! she asked her husband incredulously. Oh, they wanted to run around and stretch their legs, he said. Great, she thought, rolling her eyes.
And then, a few minutes later, her three year old started to vomit all over the store. Once in aisle 2, once on the way out the door, and again in the parking lot. Suddenly she was in full mom mode, telling the staff what happened and apologizing, glaring at her husband for bringing a sick kid into the store, taking her son over to the grass at the end of the parking lot in case he needed to puke again, ordering her husband to drive the van over, finding the pajamas she had packed and changing her son out of all of his dirty clothes, chucking the vomit-laden shoes (worn for the second time ever) into the trunk, strapping him back into the car after giving him some tylenol, and then, after all of that, just laughing and laughing.
She had to laugh, right? Because all of a sudden, that kid was fine. Singing, talking incessantly, making it hard to concentrate on the dark, dark road ahead. He never needed the antibiotics. That whole bizarre illness is just a mystery. A story now, one that this woman realizes can fit into the annals of puke stories that every woman at her stage in life should have. It can be added to so many others:
that time growing up when her entire family had the stomach flu, and a neighbor kindly brought over some dinner when they all started recovering, and that dinner was some greasy duck, and everyone started hurling again just looking at it.
that dorm party freshman year of college, when everyone had the bright idea to mix cheap vodka with fresca, and she bummed some cigarettes, and then quietly went into the coed bathroom, locked herself in a stall, threw everything up in a very confined way in the toilet, made sure no one would be able to tell, and then brushed her teeth, so she wouldn't be one of those entitled college kids who did disgusting things and then expected the janitorial staff to clean up the mess.
that valentine's day when she was 23, when her long-term boyfriend had planned to take her to the top of the Hancock building for the first time, to have a drink and go dancing. All their lives they had lived in this city, and neither of them had ever seen that view. And as fate would have it, they still wouldn't see it, because she started vomiting violently and frequently from some illness that came out of nowhere. She got sick 14 times in a span of four or five hours. Her boyfriend held her hair for her while she puked, made her jello, cleaned everything up. When her stomach began hurting so badly she couldn't stand, she called the ER, positive she had food poisoning, and they told her um…if you threw up that many times in that many hours, yes, your stomach will hurt. And she practically crawled back into bed, and her boyfriend tucked her in, and if in some universe that is romance, well, there it is.
The night before her college roommate's wedding in Los Angeles, when she was 27, when she went out on the town with one of the bridesmaids and another of her roommate's friends, to a bunch of different places in Little Tokyo. After having some sushi and saki, they ended up at a karaoke bar, where it became obvious that they weren't from around here. So the cute bartender kept sending over free drinks--huge, complicated, strong drinks. Fifteen free drinks between the three of them, one of whom had to drive back to the hotel. As she got increasingly drunk, this young woman who really didn't drink much at all got quieter and quieter. She began to realize why she wasn't much of a drinker, given that most people become more animated, not less, that most people don't just retreat into themselves at the height of their drunkenness. And she had the worst hangover the next morning, giving her another reason to be that girl who didn't drink that much. She got so sick that she became hungry for having nothing in her stomach, and she turned to that generous basket of food her friend's mother had left in the hotel room, and she ate oranges, the result of which was that she didn't eat oranges again for a very, very long time, because they didn't taste very good coming up.
The day when, at age 31, she experienced a replay of the original story here, and her entire family of three was laid out with the flu. As her daughter, nine or ten months old, recovered more quickly, she just began crawling over her sick parents who couldn't move from the floor. Mom or dad would get up only to go puke in the bathroom, and the baby would quietly go into the corner and look at a book, a portent of things to come.
That time, soon after she started her current job years ago, when she felt so sick at work that she knew she wouldn't make it home even if her boss gave her permission to leave. So she got sick in the employee bathroom, told her boss about it, and he said, ugh, just go, get out of here, and she rushed to her commuter train, hoping and hoping she would make it home before getting sick again. The motion of the train made things worse but she held on, bolted out the door at her stop, and puked all over the sidewalk. People walked around her in disgust. It was winter, and she had vomit in her hair and on her down coat and the wind was whipping it back into her face as she heaved. And she felt pretty damn alone in the world, until a woman walked up to her, quietly asked her if she was all right, and gingerly handed her some kleenex before walking away. And today, six years later, she can still recall that woman's face.
That other time when the family of three (four, actually, as she was pregnant with her son at the time), was driving up to this lake house, and it was the daughter who started puking in public, in one of those fast food restaurants previously mentioned, and the staff had to be alerted, and she continued to vomit in the car, but it was so dark in the north woods roads that she had to sit in the back and watch her while her husband drove, and they made it up to the house, but things didn't get better. Neither she nor her husband got sick, but her daughter was so miserable that they began to understand what "listless" meant, as she just sat there, mute, not moving. So they cut the vacation short, hoping to not ever go through something like that again.
And then those times, so many of them, when the thought of living one more second with that nausea was the worst thought in the world. Those times, at age 34 or 35, when vomiting was a relief. The time she got motion sickness just from making love to her husband, the other time when she ate her first normal meal in weeks and then felt so off-kilter she stuck her fingers down her throat and forced herself to throw up while her husband patted her bald head and told her it would be all right. That endless feeling of nausea, when just the smell of food warming in the kitchen sent her upstairs away from the family.
This story just became one more in the list, the one of the kid with the hives and sore throat puking in a random drugstore parking lot and then engaging her in a conversation about the color of his vomit, suddenly not sick anymore but more interested in the philosophical question of what does it mean if your throw up is blue? Well, it wasn't honey, it was red, and full of grapes. But what IF it was blue? but this time something was different. It was different because she knew it was a story right away, she knew to laugh at it, she knew not to worry or be disgusted or disappointed. She knew it was possible that they would all spend their entire vacation sick as dogs, but it wouldn't matter, because if that was going to happen, it might as well happen in a beautiful place during a time when no one had to go to work or go to school or even walk out the door once they got to the house in that remote, remote place. It didn't matter, because they would be together, having learned some things from the other stories.
And then this--the memory of this. As she waited for the prescription, before her child had arrived to defoul the pharmacy, a woman came up to the window, looking a little lost and embarrassed. She waited for a minute, for the other younger woman there to go away, apparently. She didn't leave, so this woman, in her late forties probably, a few cans of pop in her cart, asked the pharmacist: "Do you have anything for hot flashes?" And somehow, the pharmacist, a woman herself, couldn't help. They started joking, and she said, well dump yourself in a bucket of ice? haha, well obviously this woman has never had hot flashes or she would know that shit isn't funny, and then she suggested black cohosh, and the younger woman found herself nodding her head, knowing that was suggested, though it never had worked for her. After a minute of listening to this conversation, the younger woman turned to the other woman and told her they made something called i-Cool, and though it might not work for her, it was worth a try. The older woman looked confused, like, why does she know that? And the pharmacist couldn't help her locate it.
And then the kids came in, and the next vomit story commenced, but not before this happened. After her son got sick in the store the second time, she knew she should just rush him out the door. But she saw the other woman still looking lost and miserable, so she handed her son to her husband and told him to take him outside, she would be just a minute. And she went to the area of the store where they have the stuff for hot flashes, because she knew just where it would be. She grabbed the box, went over to the other woman, and put it in her hand. This woman looked at her with such shock that she felt she should explain: "Look I went through menopause from chemo. Maybe this will help you." And the woman just looked at her, not knowing what to say, so she said "Oh, wow, thanks. Thank you!"
And then, that story became that other story. The one she told her husband once they were back on the road, kids clean and happy again, and he laughed and high fived her, and told her she had done her part. That one.
After that fight she got in with her husband due to the annoyance with traffic, the drive was smooth, albeit long. She decided to stop at an actual restaurant rather than the same Wisconsin fast food chain that the family always patronized solely due to their corporate policy of placing changing stations in the men's rooms. Oh the freedom of ordering from a menu while sitting down! And yet the three year old wouldn't eat--anything. He was out of control. She herded everyone back into the van, and soon he started crying, claiming "it hurts where I eat." So she stopped at a gas station, looked in his mouth, and his throat was red and inflamed, so she bought cough drops, which he wouldn't touch, and called the doctor, who thought he might have strep. So the next step was to try to find a Walgreens in Green Bay, so the poor kid could have antibiotics if he needed them, as the closest pharmacy to the lake house was 35 minutes away and closed on weekends, and they had gone too far to turn around and go home. Somehow the family found the place, and the prescription was miraculously there, but it took a long time to get it filled. As she waited at the counter, she turned around when she heard a familiar voice and there was her family. Why are they out of the car?! she asked her husband incredulously. Oh, they wanted to run around and stretch their legs, he said. Great, she thought, rolling her eyes.
And then, a few minutes later, her three year old started to vomit all over the store. Once in aisle 2, once on the way out the door, and again in the parking lot. Suddenly she was in full mom mode, telling the staff what happened and apologizing, glaring at her husband for bringing a sick kid into the store, taking her son over to the grass at the end of the parking lot in case he needed to puke again, ordering her husband to drive the van over, finding the pajamas she had packed and changing her son out of all of his dirty clothes, chucking the vomit-laden shoes (worn for the second time ever) into the trunk, strapping him back into the car after giving him some tylenol, and then, after all of that, just laughing and laughing.
She had to laugh, right? Because all of a sudden, that kid was fine. Singing, talking incessantly, making it hard to concentrate on the dark, dark road ahead. He never needed the antibiotics. That whole bizarre illness is just a mystery. A story now, one that this woman realizes can fit into the annals of puke stories that every woman at her stage in life should have. It can be added to so many others:
that time growing up when her entire family had the stomach flu, and a neighbor kindly brought over some dinner when they all started recovering, and that dinner was some greasy duck, and everyone started hurling again just looking at it.
that dorm party freshman year of college, when everyone had the bright idea to mix cheap vodka with fresca, and she bummed some cigarettes, and then quietly went into the coed bathroom, locked herself in a stall, threw everything up in a very confined way in the toilet, made sure no one would be able to tell, and then brushed her teeth, so she wouldn't be one of those entitled college kids who did disgusting things and then expected the janitorial staff to clean up the mess.
that valentine's day when she was 23, when her long-term boyfriend had planned to take her to the top of the Hancock building for the first time, to have a drink and go dancing. All their lives they had lived in this city, and neither of them had ever seen that view. And as fate would have it, they still wouldn't see it, because she started vomiting violently and frequently from some illness that came out of nowhere. She got sick 14 times in a span of four or five hours. Her boyfriend held her hair for her while she puked, made her jello, cleaned everything up. When her stomach began hurting so badly she couldn't stand, she called the ER, positive she had food poisoning, and they told her um…if you threw up that many times in that many hours, yes, your stomach will hurt. And she practically crawled back into bed, and her boyfriend tucked her in, and if in some universe that is romance, well, there it is.
The night before her college roommate's wedding in Los Angeles, when she was 27, when she went out on the town with one of the bridesmaids and another of her roommate's friends, to a bunch of different places in Little Tokyo. After having some sushi and saki, they ended up at a karaoke bar, where it became obvious that they weren't from around here. So the cute bartender kept sending over free drinks--huge, complicated, strong drinks. Fifteen free drinks between the three of them, one of whom had to drive back to the hotel. As she got increasingly drunk, this young woman who really didn't drink much at all got quieter and quieter. She began to realize why she wasn't much of a drinker, given that most people become more animated, not less, that most people don't just retreat into themselves at the height of their drunkenness. And she had the worst hangover the next morning, giving her another reason to be that girl who didn't drink that much. She got so sick that she became hungry for having nothing in her stomach, and she turned to that generous basket of food her friend's mother had left in the hotel room, and she ate oranges, the result of which was that she didn't eat oranges again for a very, very long time, because they didn't taste very good coming up.
The day when, at age 31, she experienced a replay of the original story here, and her entire family of three was laid out with the flu. As her daughter, nine or ten months old, recovered more quickly, she just began crawling over her sick parents who couldn't move from the floor. Mom or dad would get up only to go puke in the bathroom, and the baby would quietly go into the corner and look at a book, a portent of things to come.
That time, soon after she started her current job years ago, when she felt so sick at work that she knew she wouldn't make it home even if her boss gave her permission to leave. So she got sick in the employee bathroom, told her boss about it, and he said, ugh, just go, get out of here, and she rushed to her commuter train, hoping and hoping she would make it home before getting sick again. The motion of the train made things worse but she held on, bolted out the door at her stop, and puked all over the sidewalk. People walked around her in disgust. It was winter, and she had vomit in her hair and on her down coat and the wind was whipping it back into her face as she heaved. And she felt pretty damn alone in the world, until a woman walked up to her, quietly asked her if she was all right, and gingerly handed her some kleenex before walking away. And today, six years later, she can still recall that woman's face.
That other time when the family of three (four, actually, as she was pregnant with her son at the time), was driving up to this lake house, and it was the daughter who started puking in public, in one of those fast food restaurants previously mentioned, and the staff had to be alerted, and she continued to vomit in the car, but it was so dark in the north woods roads that she had to sit in the back and watch her while her husband drove, and they made it up to the house, but things didn't get better. Neither she nor her husband got sick, but her daughter was so miserable that they began to understand what "listless" meant, as she just sat there, mute, not moving. So they cut the vacation short, hoping to not ever go through something like that again.
And then those times, so many of them, when the thought of living one more second with that nausea was the worst thought in the world. Those times, at age 34 or 35, when vomiting was a relief. The time she got motion sickness just from making love to her husband, the other time when she ate her first normal meal in weeks and then felt so off-kilter she stuck her fingers down her throat and forced herself to throw up while her husband patted her bald head and told her it would be all right. That endless feeling of nausea, when just the smell of food warming in the kitchen sent her upstairs away from the family.
This story just became one more in the list, the one of the kid with the hives and sore throat puking in a random drugstore parking lot and then engaging her in a conversation about the color of his vomit, suddenly not sick anymore but more interested in the philosophical question of what does it mean if your throw up is blue? Well, it wasn't honey, it was red, and full of grapes. But what IF it was blue? but this time something was different. It was different because she knew it was a story right away, she knew to laugh at it, she knew not to worry or be disgusted or disappointed. She knew it was possible that they would all spend their entire vacation sick as dogs, but it wouldn't matter, because if that was going to happen, it might as well happen in a beautiful place during a time when no one had to go to work or go to school or even walk out the door once they got to the house in that remote, remote place. It didn't matter, because they would be together, having learned some things from the other stories.
And then this--the memory of this. As she waited for the prescription, before her child had arrived to defoul the pharmacy, a woman came up to the window, looking a little lost and embarrassed. She waited for a minute, for the other younger woman there to go away, apparently. She didn't leave, so this woman, in her late forties probably, a few cans of pop in her cart, asked the pharmacist: "Do you have anything for hot flashes?" And somehow, the pharmacist, a woman herself, couldn't help. They started joking, and she said, well dump yourself in a bucket of ice? haha, well obviously this woman has never had hot flashes or she would know that shit isn't funny, and then she suggested black cohosh, and the younger woman found herself nodding her head, knowing that was suggested, though it never had worked for her. After a minute of listening to this conversation, the younger woman turned to the other woman and told her they made something called i-Cool, and though it might not work for her, it was worth a try. The older woman looked confused, like, why does she know that? And the pharmacist couldn't help her locate it.
And then the kids came in, and the next vomit story commenced, but not before this happened. After her son got sick in the store the second time, she knew she should just rush him out the door. But she saw the other woman still looking lost and miserable, so she handed her son to her husband and told him to take him outside, she would be just a minute. And she went to the area of the store where they have the stuff for hot flashes, because she knew just where it would be. She grabbed the box, went over to the other woman, and put it in her hand. This woman looked at her with such shock that she felt she should explain: "Look I went through menopause from chemo. Maybe this will help you." And the woman just looked at her, not knowing what to say, so she said "Oh, wow, thanks. Thank you!"
And then, that story became that other story. The one she told her husband once they were back on the road, kids clean and happy again, and he laughed and high fived her, and told her she had done her part. That one.
Wednesday, August 22, 2012
Day 840: KatyDid 37
Especially now.
But really, what’s the birthday celebration all about? It seems like we should be congratulating our mothers on the anniversaries of our births. What did we do, after all? We were just BORN. It’s not like that’s an achievement.
Except, maybe, it is. Sometimes you have to fight to be born. And maybe, just maybe, you show yourself, your true colors, from the start. The story of the long labor that led to my birth is legendary, especially because my dad told the nurse he thought I was trying to wiggle off of the hospital scale. He was told that was impossible, because newborn babies really can’t move. And then, the nurse looked over, and said, Jesus, that kid is squirming to get off the scale.
You know, just trying to get the hell out of dodge. Always looking for an exit—that’s me.
Lenny was not interested in the whole thing—I had to push her for two and a half hours. The heart monitor fell off inside my body, AFTER her heart rate plummeted precariously following the epidural. When she was born, her head was cone-shaped and beat up from the fight. She didn’t cry. Gabe wondered if she was even alive. She didn’t feel like eating, she had trouble hearing out of one ear, she had jaundice. And yet, people in the hospital came to see her—nurses, other doctors I had never even met-- and marvel at how pretty she was. Through it all, she just sat there—looking, always looking, waiting to see what would happen next.
Augie couldn’t wait to get the party started. He came three weeks early, spared me the 8.5 pounds my bum hips probably couldn’t withstand, and was completely healthy at just under 7 pounds, wailing and eating and looking pissed off right away. After nursing furiously every few minutes for hours after birth, he fell asleep for two entire days. Within weeks he was laughing in his sleep.
So maybe that’s what we celebrate—the fight, and the way we experienced it, and the fact that we’ve had the opportunity to do it again, for one more year. The initial fight is one that we will never remember, that lives on only through stories told to us by people who were there. And that story begins the story of our lives, the lives that so many have to fight for every single day.
I wrote a pretty damn good blog for my birthday last year, if I do say so myself. I summed it up near the end, saying, “I think about getting old, and I still hope I get to do it.”
And that’s the truth. I don’t think about getting middle-aged, or worry over my lost youth. It helps, I suppose, that I still get carded sometimes, and that kids 15 years younger than me whom I see as potential babysitters assume I am around their age until they find out the truth and then they say things like “wow you look GREAT,” (for your age you freaking dinosaur lady, I mean my god when I’m that old I will be this short of THE GRAVE.”)
I suppose it helps, but really, I want to be 37. I definitely feel 37. I’ve felt like an old lady since I was a child. I don’t mean that in a negative way. But life, and the experience that came with it, was always very much with me. I tell my kids that all the time—this age? This specific number of years? I’m proud of it. Lord knows, I’ve earned it.
The kids see things differently, of course. They want to be older—right now. Augie figured out when he was 2 that it would be 19 years until he was allowed to drink a beer, so at age three he has switched that question around: “Mommy, how old do I have to be to drink wine?” Lenny always wants to guarantee that she will be three years older than her brother NO MATTER WHAT. She asks how old I was when I got married (never when I met her dad, because, in her mind, we have always been married, waiting around for her and her brother to miraculously be born), what year it was when I learned to drive or left for college. Those questions are on her easy days. Other days, it’s “mom, is there anyone in our family who was alive 90 years ago?” “No one lives to be 200, right?” “When the universe began…”
CHRIST LENNY, ENOUGH! Can’t you just ask me about the legal drinking age like your brother?
Augie wants to know WHEN his best friend is moving back to Chicago—not IF. He asks when he will go to Lenny’s new school, how many years it will take to get there. The answer could possibly be never, since getting into the public school that Lenny will attend in the fall is as notoriously difficult and absurd a process as anything Kafka dreampt up.
In a way, Lenny understands already, and Augie’s starting to as well.
Time—what a concept. Time keeps moving, but at some point, you stop moving. What a thing to wrap your mind around. To them, time is about experience—the things you get to do, the places you hang your hat. To me, it’s about memory.
How old was I when I started drinking coffee? I don’t remember—probably 15? One day my mom was making coffee for herself and maybe I asked for some, and it was just the two of us living in the house at that point, so she didn’t flinch, or she offered me a mug, or somehow we just found ourselves silently reading the paper and drinking coffee like that’s what we had always done.
What do you mean, there used to be two Germanys? Well, see, there was this wall…we talk about it as if it “fell” when I was 14, but of course that’s not really true, and that physical wall was all tied up with this political concept it is hard for you to understand and this other country that no longer exists. I remember being assigned the role of the Soviet Union in a debate in 6th grade, wherein I was forced to defend my nuclear strategy, and then right around my 16th birthday I was cuddling with my boyfriend at his parents’ house on the couch in the basement and we were watching this whole scene involving an attempted coup, and we looked at each other and actually said, in spite of our youth, we are watching history unfold on the television right now, and within months there was no more Soviet Union, and no matter how much geography you know right now, you really have no idea what I’m talking about, do you honey?
Or, time sneaks up on us when we least expect it to or want it to, and when we are out at the karaoke bar for a fun celebration for a friend’s birthday, right after we celebrated my birthday with a big party at our house that I baked ten different desserts for, suddenly your father disappears. Time is so relative that it takes me a while to realize he has gone. Finally I text him and he tells me that he is out in the car. Excuse me? What the hell are you doing? Well Kate I really wanted to sing a romantic song to you for your birthday but then I just started thinking about the last time I did that at this bar, two years ago when you were bald and in the middle of chemo and everything came rushing back at me and I knew I was going to lose it so I went outside. And at that time and in that moment I knew I should sympathize but I didn’t. I told him fine but you’d better get your ass back in here soon, and when he wasn’t back in a few minutes, I sent him a text that summed up my feelings on the matter and prompted him to scurry back into the bar:
Time’s up.
And it was, in a way, but of course, in another way, it wasn’t. His time wasn’t up yet. Neither is mine. I’ve just had to fight a little bit more for the time I’ve had. So here’s to the fact that Katydid 37, when she wasn’t sure if she would do 35. When I hear another woman my age lament the closeness of 40, I think, girl, I’m TRYING for 40. In 2015, I hope to be able to mark 5 years NED, 30 years of being able to walk again, 9+ years of watching my heart walk around outside of my body, 23 years of wondering if my brain’s electrical impulses would cooperate without help, 40 years of the stubborn, difficult, eye-rolling, trash-talking, fight.
I’m trying for it, for more of this concept called time, because I don’t know any more than anyone else when my time will be up. The jury’s still out on that. The jury’s settled though, on one other matter:
Clocks and calendars keep some of our time, but our stories keep the rest.
Thanks to Tracey Medrano Becker for taking the first two pics in this blog at my awesome birthday party.
Sunday, August 5, 2012
Day 823: A Mother's Perspective on Breast Cancer
I have been getting a little sick of my own perspective on things, so I asked for some other points of view. Here's my mom's guest post.
Guest Post by Martha Jacob
When you asked me if I wanted to guest write your blog, I said Sure, just let me get settled from our move.
We’ve – my second husband and I - left the townhome in Chicago and settled into a little bungalow in Oak Park – back home…kind of.
I raised you and your brother here. Lived here 30 years, as a young married, as a divorced woman going back to college in my late 30s, then working and then grad school in my 50s. You were born at West Suburban (your brother was born at Central DuPage when it was one small building in the middle of cornfields). You went to pre-school here (the teachers loved your sense of humor), grade school (you played violin and basketball and floor hockey and just a year of t-ball – as for baseball, you said you would rather be your brother’s biggest fan –and you were), junior high (where cliques were formed and you found out it was better to be on the outside and you went to the high school for math as an eighth grader – understanding geometry better than all of us), and high school (when you kept your emotions locked up in your tiny bedroom, much to my dismay and when, to my chagrin, you told me it wasn’t really fair to compare your heartbreaks to the holocaust – only following my mom I said– It could be worse, you could be leading your children into the gas chambers she would say, meaning my concerns were diminished and I wish I had remembered what that felt like).
You came home from Macalester for breaks on the Greyhound. I would pick you up at the station in Chicago on Harrison at 4 or 5 in the morning after your 8 hour ride and there you would be, Pumbaa doll strapped to your back pack, signaling that absolute disinterest in how you appeared to others – the groundwork as it were for your ability to go everywhere bald and care little how it looked to others, knowing it was important somehow to get that message across.
You chose the biggest bedroom with the half bath in the apartment we rented after we sold the house where you grew up. You were sick of little bedrooms with no closets for your great fashion sense – and I couldn’t blame you. The bedroom in the new apartment had a walk-in closet and fit it all…shoes included….so many many shoes.
Then after we fought over Jon being there (not that I cared since I loved him like a son, but that I did care because it was just too small an apartment) you became at, what, 22? the manager of a big apartment building where you saved the rent you didn’t pay and bought a condo at age 25. I kept asking myself – Who is this kid? Your dad and I did not exactly set that kind of example. You worked to buy your own clothes from the time you were 15 – babysat at 11 (I hated babysitting). You knew how to do it.
We spent summers together at Rehm Pool. Summers I treasure, talking about everything, for many years, your hard break up with Jon – your best friend for so many many years – my job, your jobs, my foray into grad school, your foray into grad school, your new and forever love Gabe, and then, my marriage-to-be.
Never again I said, but never say never is so so so so accurate. I moved from the apartment to Chicago. You were dating Gabe, loved him, he loved you, the time was right, and you married him a little over a year later.
You found the house in Beverly, had Lenny, had Augie, had breast cancer. Weaned Augie overnight and our worlds crashed.
I kept saying I wish it were me. You looked me in the eye and said Mom, that doesn’t help.
It’s not fair. We both said. And it wasn’t – it isn’t. It wasn’t fair to lose that beautiful hair. But it was, of course, in the end, hair. It wasn’t fair for you to be terrified. I will never forget the look on your face the morning you came down the stairs where I was sleeping on your couch to be there with the kids while you went off for surgery. Would they have to do a mastectomy? Would it spread to the lymph nodes? Would you wake up with the cancer gone?
No mastectomy (oh I anguished over that – moms want everything done to the extreme if there is any chance – you did your research as you are so good at doing and knew the difference was not worth it). No spread. But no clear margins and so another surgery.
Not fair. But clear margins finally.
Heart problems from chemo. Acupuncture, scares, second thoughts. You worked through chemo, ran from radiation in your neighborhood first thing in the morning to whatever else it was you needed to do. I went to chemo once, radiation once. I needed to. Gabe took so much on (and how scared he was). Your friends took on meals and babysitting when I didn’t. The support you had was incredible.
All the while bald and, as always, in fashion (something I know nothing about except to know you are). All the while exercising like it was saving your life (and on so many levels, I imagine it has), spinning, eventually even rowing – rowing? The kid who would rather be the fan?
Lenny remembered what it was like to wake up when Mommy had hair. But except for that once or so when you wore the wig or scarf, you made it clear that this was the situation and that was that.
Two years later, I gratefully write this guest blog. Grateful because you wrote it for those long days and months and I could read it and know what you were thinking because you didn’t hide your emotions in that small room. God I needed that. We have always pretty much been honest with each other, but that kind of honesty became the grace that we all needed to get through this with you….since we, I, couldn’t do it for you.
I said to you once and of course I didn’t need to point it out. But I said, You have to understand, You’re my Lenny. Can you imagine if it were you going through this with her?
Scientific advancements being what they are, we will assume that will never be the case. We have to. We, I, you, can’t do anything else.
But of course, we will go through whatever has to be. That is what people do in this situation.
There are no heroes. There are only people who do what they have to do because others are out there loving them, expecting, imploring, begging them to do whatever it takes to be there. Cancer, like any terror, changes the game. And it changes it forever. How I wish I could take away the wait for those few years to pass for you to feel (not get) the all clear. You may well get it way before you will ever feel it I imagine.
So yes, I gratefully said Sure I will guest write the blog. It’s the least I can do. You did the rest. You.
Not Gabe, not me, not your friends, not your doctors, not your legions of other types of supporters….although thank goodness for all of them.
You.
Love,
Mom
When you asked me if I wanted to guest write your blog, I said Sure, just let me get settled from our move.
We’ve – my second husband and I - left the townhome in Chicago and settled into a little bungalow in Oak Park – back home…kind of.
I raised you and your brother here. Lived here 30 years, as a young married, as a divorced woman going back to college in my late 30s, then working and then grad school in my 50s. You were born at West Suburban (your brother was born at Central DuPage when it was one small building in the middle of cornfields). You went to pre-school here (the teachers loved your sense of humor), grade school (you played violin and basketball and floor hockey and just a year of t-ball – as for baseball, you said you would rather be your brother’s biggest fan –and you were), junior high (where cliques were formed and you found out it was better to be on the outside and you went to the high school for math as an eighth grader – understanding geometry better than all of us), and high school (when you kept your emotions locked up in your tiny bedroom, much to my dismay and when, to my chagrin, you told me it wasn’t really fair to compare your heartbreaks to the holocaust – only following my mom I said– It could be worse, you could be leading your children into the gas chambers she would say, meaning my concerns were diminished and I wish I had remembered what that felt like).
You came home from Macalester for breaks on the Greyhound. I would pick you up at the station in Chicago on Harrison at 4 or 5 in the morning after your 8 hour ride and there you would be, Pumbaa doll strapped to your back pack, signaling that absolute disinterest in how you appeared to others – the groundwork as it were for your ability to go everywhere bald and care little how it looked to others, knowing it was important somehow to get that message across.
You chose the biggest bedroom with the half bath in the apartment we rented after we sold the house where you grew up. You were sick of little bedrooms with no closets for your great fashion sense – and I couldn’t blame you. The bedroom in the new apartment had a walk-in closet and fit it all…shoes included….so many many shoes.
Then after we fought over Jon being there (not that I cared since I loved him like a son, but that I did care because it was just too small an apartment) you became at, what, 22? the manager of a big apartment building where you saved the rent you didn’t pay and bought a condo at age 25. I kept asking myself – Who is this kid? Your dad and I did not exactly set that kind of example. You worked to buy your own clothes from the time you were 15 – babysat at 11 (I hated babysitting). You knew how to do it.
We spent summers together at Rehm Pool. Summers I treasure, talking about everything, for many years, your hard break up with Jon – your best friend for so many many years – my job, your jobs, my foray into grad school, your foray into grad school, your new and forever love Gabe, and then, my marriage-to-be.
Never again I said, but never say never is so so so so accurate. I moved from the apartment to Chicago. You were dating Gabe, loved him, he loved you, the time was right, and you married him a little over a year later.
You found the house in Beverly, had Lenny, had Augie, had breast cancer. Weaned Augie overnight and our worlds crashed.
I kept saying I wish it were me. You looked me in the eye and said Mom, that doesn’t help.
It’s not fair. We both said. And it wasn’t – it isn’t. It wasn’t fair to lose that beautiful hair. But it was, of course, in the end, hair. It wasn’t fair for you to be terrified. I will never forget the look on your face the morning you came down the stairs where I was sleeping on your couch to be there with the kids while you went off for surgery. Would they have to do a mastectomy? Would it spread to the lymph nodes? Would you wake up with the cancer gone?
No mastectomy (oh I anguished over that – moms want everything done to the extreme if there is any chance – you did your research as you are so good at doing and knew the difference was not worth it). No spread. But no clear margins and so another surgery.
Not fair. But clear margins finally.
Heart problems from chemo. Acupuncture, scares, second thoughts. You worked through chemo, ran from radiation in your neighborhood first thing in the morning to whatever else it was you needed to do. I went to chemo once, radiation once. I needed to. Gabe took so much on (and how scared he was). Your friends took on meals and babysitting when I didn’t. The support you had was incredible.
All the while bald and, as always, in fashion (something I know nothing about except to know you are). All the while exercising like it was saving your life (and on so many levels, I imagine it has), spinning, eventually even rowing – rowing? The kid who would rather be the fan?
Lenny remembered what it was like to wake up when Mommy had hair. But except for that once or so when you wore the wig or scarf, you made it clear that this was the situation and that was that.
Two years later, I gratefully write this guest blog. Grateful because you wrote it for those long days and months and I could read it and know what you were thinking because you didn’t hide your emotions in that small room. God I needed that. We have always pretty much been honest with each other, but that kind of honesty became the grace that we all needed to get through this with you….since we, I, couldn’t do it for you.
I said to you once and of course I didn’t need to point it out. But I said, You have to understand, You’re my Lenny. Can you imagine if it were you going through this with her?
Scientific advancements being what they are, we will assume that will never be the case. We have to. We, I, you, can’t do anything else.
But of course, we will go through whatever has to be. That is what people do in this situation.
There are no heroes. There are only people who do what they have to do because others are out there loving them, expecting, imploring, begging them to do whatever it takes to be there. Cancer, like any terror, changes the game. And it changes it forever. How I wish I could take away the wait for those few years to pass for you to feel (not get) the all clear. You may well get it way before you will ever feel it I imagine.
So yes, I gratefully said Sure I will guest write the blog. It’s the least I can do. You did the rest. You.
Not Gabe, not me, not your friends, not your doctors, not your legions of other types of supporters….although thank goodness for all of them.
You.
Love,
Mom
Tuesday, June 26, 2012
Day 783: One of Those Days
Boy am I having one of those days. You know what I mean, right? One of THOSE days! One of those days where I:Sit in my windowless office at work feeling like I’m crawling out of my skin, with tears rolling down my face for no discernible reason, except that I am experiencing these new-to-this36-year-old woman mood swings brought on by hormone changes from my second puberty, and because I am unaccustomed to such displays of emotion, especially in inappropriate settings, I begin to think about all kinds of things that just make me more sad and nostalgic and depressed and really, just verklempt, things like:
The age I was when these moods would have been normal, and I was just living so completely, and it seemed like everything was new--my body and boys’ bodies and cars and friends I knew I would never keep and getting drunk and that whole process that is just so cliché and so real, that time when you become yourself—and the idea of a future and how hard life was, in a real and adult way even though I was really just a child
The childhood I had, or didn’t have, the way I see children who are so at home and confident in their bodies and their minds, and the things that I learned having never felt that way from the time I was six years old
The fight I had with my husband this morning that I didn’t know how to fix nor feel inclined to fix, the conversation I had in my head that began, well, it is his fault, yes but who cares what is the point in sitting on the train next to your partner and lover in silence, and being too stubborn, with a fuse too short, and too much baggage weighing down everything we’ve been through and knowing I should change and just forget it but also knowing that I’m too stubborn and I won’t
The fact that I just don’t do things the right way, the knowledge that I love to be alone even though I have those beautiful children and a young loving husband and friends whom I will meet with on several nights this very week, and that I will just have to tell myself that my kids like to know that I’m there, and that for us, “there” is relative, they don’t necessarily care where or what I’m doing but they want to know that I’m THERE, that I exist, that I come home to them, that I will always come home to them
The guilt I feel over how much I’ve needed a vice over the last few years, and how bad I am at achieving that, so rather than go for something really good, like an affair or a gambling addiction or a drastic and irrational career change, I have gone for the one thing I shouldn’t do and have started drinking regularly which for me means like one drink a day, an amount that even my mother approves of, since it helps me sleep and it is oh so hard for me to sleep, showing that I’M NOT EVEN GOOD AT THAT, and that vice has led me to gain a few pounds, literally, as in two, and that is the OTHER thing I’m really not supposed to do, damn weight gain, and because even that two pounds bothers me for various reasons I know I need to just stop and GODDAMN IT WHY CAN’T I JUST HAVE A VICE?!
The conversation I had the other night with a woman who is at the early stages of dealing with this damn disease, who doesn’t know when she will get surgery, or if she needs chemo, and is hoping she can escape it all, and I tell her that I wish she could too but we both know that she can’t, and I say just think about it it’s like any other disease that people deal with, you take medication for things like epilepsy and diabetes and heart disease and this is just a version of that, look at me, it’s two years later, you are just beginning but it does get better, and she says well maybe I could just be like Steve Jobs and do alternative treatments and I think to myself, Jesus I hope he is not the goal, and I say out loud, well think of it this way, surgery and chemo suck but it’s better than being dead, and she laughed in such a real, appreciative way, she slapped the table and said thank you, I will remember that on my bad days, I will tell myself, ok, this sucks, But it’s better than being dead.
The thought that of course this is better than being dead, it all is, all there is in the world are things that are better than being dead, but if I could I would dedicate my life to the opposite of feeling dead and just feel alive alive alive all the damn time and no it's not cancer that made me feel that way, I have always felt that way as long as I could remember, but I've had to get that extraordinary feeling within this very ordinary life
Yeah, one of THOSE days. So I wrote this. And, this. As always, thank you for reading. I guess they can't all be funny. And I only have about 36 hours a month where I am even capable of being this deep, so it won't be long till I'm back to talking about completely inappropriate things. Promise.
Conversation with a Bald Eagle
by Katy Jacob
How strange to learn that eagles truly have faces,
in the same way our children have faces.
What is normally but a silhouette is now close enough to study.
I can see the beak protruding from the white head,
and it could be a picture, but for the circling.
Circling so gracefully, the world seems to pause.
I am mesmerized, rooted inside the time he has made.
Then I come to and paddle the boat faster,
away from the loons I am sure the eagle seeks.
I hope he will stay near me; I am lost in fascination.
And sure enough, he follows, getting closer.
There are no sounds but that
of my feet on the paddles and the wind in the water.
The loons are in hiding.
There is no one but me on the lake.
I slow down, stop, and wait.
He hovers, and it occurs to me
that he is thinking, how strange to see
that egg turning towards me,
why is that small bird inside such a large blue nest?
I think of the phrase “bird of prey.”
I am in limbo, in short sight of the house,
but I will need to fight the waves to get there.
We seem so small to one another,
given the distance between air and water.
Neither is sure of the other’s intentions.
Eventually, I begin to paddle home,
and he leaves me, heading north.
It is good to come to such an understanding.
I realize we all feel this alone.
It is worth knowing the right names for things.
One bird’s meal is another’s final mistake.
One man’s symbol of hope is another’s death omen.
It is important to understand that the one is a privilege,
the other a certain promise.
The rest is just air filling in the circle,
helping us to forget what lies right outside the perimeter,
in the space where we are and we aren’t.
Monday, June 18, 2012
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.
Thursday, June 14, 2012
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.
Wednesday, May 9, 2012
Day 735: KatyDid Cancer...For Real?
What a couple of years, actually.
I have so much to say, and yet I don't know where to begin. So I guess I will begin with yesterday's news.
Most of you know that I had a clean mammogram, though saying "mammogram" in the singular is misleading. I had ten of them yesterday: six on the left and 4 on the right. I have never gone in for a mammogram and had fewer than 8 radioactive pictures taken. But regardless, the results were as close to "normal" as someone with a history of breast cancer is allowed to have. The innocuous sheet of paper that at one point warned me that I had breast cancer told me that findings "appeared to be benign." I have been so nervous, in a way that those who have not done follow-up scans post-cancer-treatment cannot understand. I have been someone else, someone stuck in a strange place where I wanted a time machine that could either stop time or speed it up, all depending on the results of that damn test. While I rubbed my sore chest after the procedure, I had the following text exchange with Gabe, waiting three rooms away:
K: finally done with images waiting to see if I need more and to talk to radiologist
G: OK. I love you! I hope you don't need more.
G: Did you get either of these jumble words? ISOTH or DOBRIF
(K thinking to self, fucking jumble words? ARE YOU INSANE? Then thinking to self: Hoist. And Fibroid. Oh wait, there's only one i. Wait a minute...forbid, that's it. Fibroid? Can you say TUMORS ON THE BRAIN? Meanwhile, mammo tech comes to get me and says, Ms. Jacob, follow me. Why, do I need more pictures, I ask in a panicked voice. She looks at me and realizes that she is about to needlessly induce panic by asking me to wait to get to a private room to get the results. No, you win the prize today, she said. You don't have to come back for a year. Sign here. What? I ask? It's normal? Yes, as normal as can be expected. oh, I said. GIVE ME THAT PEN!)
K: I'm fine! Don't have to come back for a year! Getting dressed!
G: Yay! Love you so much SOOOO relieved!
And then, I proceeded to wait another four hours until I actually got to leave the damn place. I had to wait for the surgeon next. Is there a possibility I can get in sooner? Yes, it's possible, they told me.
Well, really, isn't anything?
So when I finally saw the medical student who preceded the P.A. who preceded the actual surgeon I had been there for two and a half hours. This young kid hands me a survey. He tells me it's a research study they're doing on chronic pain, because they have started to realize that a significant portion of women, as high as 40%, have this problem.
REALLY? Who is going to pay ME to verify that fascinating revelation? Remember when I begged you all for A YEAR AND A HALF to get me some physical therapy because of issues with chronic pain and range of motion problems? Oh wait, you're like 22, so you have no memory of that. So this entire survey is one long annoying pain scale, the kind that people like me with high tolerances for pain should never fill out. The kid actually said "Yeah, most women who come in here have a high tolerance for pain." You think? Anyway, 1 is the least pain, 10 is the most. Can pain ever really be higher than 6? That's what I said in labor before any drugs when the digital meter almost broke from my continuous contractions. To make matters worse, this was a "subjective" pain scale, asking me about all kinds of different pain and whether I experienced them: stabbing. sharp. achy. shooting. throbbing. stinging.
And then it got interesting:
Gnawing? Fearful?
The guy looked at us a little fearfully, actually, as Gabe started playfully gnawing on my arm. Um, the student said...you haven't even gotten to the last one yet.
"Cruel or punishing?"
Get out. It doesn't say that. What the hell does that even MEAN? Oh, if only I didn't do research for a living, I would have a party with this survey. After choosing zero for cruel and punishing, I filled out the rest of the thing, which had all kinds of other questions about how I feel and have felt in the last 2 weeks. Do I have trouble sleeping? Yes, always. Do I want to hurt myself? Kill myself? Do I feel worthless? Um, wow. No. Have I been nervous? fidgety? Unable to concentrate? At that point I stopped circling numbers.
"You know what?" I asked the kid. "I just had a mammogram. My two year mammogram to see if I have breast cancer again. It is worthless to ask me if I've been nervous and unable to concentrate because I have been thinking about nothing else and pretty useless in other areas of my life. You all need to time these surveys better."
He looked so relieved to leave the room. I can't say I blame him. Then the P.A. came in, and I must admit I like this guy. He's pretty nonchalant. He's the one who actually gave me the physical therapy scrip, so I thanked him for that and told him how much it helped me. Then I was about to rip my gown off to offer the P.A. my boobs so he could do an exam, but I stopped myself when I realized he wasn't going to ask to do one. Just about anyone on earth could have given me a breast exam right then and I wouldn't have given two shits. He asked me a few questions and left. The surgeon came in, felt my boobs, told me I don't have to see her again for a year, and looked shocked when I told her how far my scar tissue had traveled according to the physical therapist. I got dressed and Gabe and I went out to eat. I had this delicious veggie filled crepe and some grits. I drank 87 cups of coffee.
I felt like I was walking on air. Or, even, water.
Gabe went back to work and I went back to the hospital to wait for my visit with the oncologist. This seemed pointless to me. He would ask me some questions (any aches or pains? still having cycles? taking any new medications? feeling tired?), manipulate my body and undress me and then tell me (say it with me, you know what's coming): "You look great."
Why do we have to do this dance after the wonderful news I just received? Why can't I just go home and celebrate? Of course, I know why. Here's the thing. My triple negative breast cancer was never very likely to recur in the breast. It is a cancer type that is much more likely to metastasize to distant areas of the body. Mammograms are actually likely to be normal for me. Not as likely as for someone who DIDN'T HAVE BREAST CANCER, but still, you know what I'm saying. It's the aches, pains, tiredness, that matter.
But I was still flying high off that mammogram news and the sudden realization that I MADE IT TWO YEARS. Two years with no evidence of disease. The critical two years that every triple negative breast cancer patient can't believe will ever come. And yes, my cancer could come back. It could spread. I've heard it happen to too many women before me not to know that, not to think of the women who made it two or three years out and felt great until...they didn't. And they found out they were stage 4, when they had initially been stage 1 or 2. It could happen, because it sometimes happens with breast cancer, especially when your disease type is aggressive and especially when you're young.
But it hasn't happened yet. Not in two years. And that opens up a bit of the world for me, the world where you all live and I have only visited recently. I have tried my best to be normal, all the while knowing that I will never be the same. While I was waiting for my oncologist, I started checking facebook. I sat there cracking up at the following image posted by Jennie Grimes, a woman I know from ROW who is five years younger than me and dealing with mets, waiting for scan results today that I have never had to do. I wrote her: "LOL! People being wrong on the Internet."
...I sat there reading GQ because the hospital's reading choices are completely whack, and there was a dated article about Chris Evans just after Captain America came out. The article was kind of boring, but the pictures of him in these uber-stylish clothes that I can't imagine any man in Chicago ever wearing were interesting. He was showing off his pecs in several of them, and since he's famous for them, you can't really fault him for that. And that's how I learned that Chris Evans has chest hair. Not Steve Carrell style chest hair, but nice sexy chest hair like a 30 year old man should have. And then I started thinking, what? Do they make him wax for the movies? Just airbrush it? WTF? That's like getting a boob job if you DIDN'T have breast cancer. Why are we always trying to improve on things that were ALREADY AWESOME?
...I was cheering on another lady in the waiting room who decided that one of the staff was rude. She was all, oh hell, I've been coming here for nine years, so I don't care about me, but what about the women who are new? What about the women who don't know what their lives will be like and they're just starting chemo? You can't treat people like that! I'm writing a complaint. She should work with some other types of patients. And I was thinking YES! TELL THEM SISTER! And then I thought, NINE YEARS? Hell if I keep coming to see these people for nine years! You should be pissed off just for that!
...I started planning dinner even though I wasn't remotely hungry after that crepe. I also wondered if I would have enough time to shop after the appointment ended and before my parking validation would expire.
...I didn't even mind my little dance with the oncologist. He asked me the questions, I asked him if I should be taking vitamins, he said no, I asked if two years was really the critical point for triple negative cancer, he said the first two or three years is always the most critical for any cancer. I said I felt great. He said You look great. When he left after about a seven minute visit that I had waited 5 hours for, I got dressed and started to upload the picture of me with my evidence of a clean mammogram so I could tell folks via FB who had been worrying about me all day. I waited for five hours, and then spent an extra 90 seconds typing in my status, and a nurse came in demanding to know if I was waiting for something. So I refused to look up at her, kept texting and said "Not anymore."
...I got all pissed off when I got back to the parking garage and my damn parking ticket wouldn't work in the automated payment terminal. I had to call for assistance from the little parking vending machine. The woman told me to drive to customer service. Fine, I said, where is that? The droning voice answered: "you need to drive to customer service." OK, where? ground floor? This is an enormous parking garage. "You need to drive to customer service." This went on, until I slammed my hand into the machine in disgust. The voice continued talking and the woman behind me said in response to it, "Um, she already left."
All people who don't want me to have cancer. People who don't want me to die. People who were happy for their own reasons, including, as Gabe said, that "some of them are probably hoping they don't have to hear anything from you about cancer anymore because they're sick of it!"
Well, too bad. Unless I stop writing this completely, which is a very real and even imminent possibility (are my random ramblings really interesting if they aren't about cancer? this is the thing that still confuses me about blogging), cancer is a part of me now. I do not see the victory in going back to my old self. I'm not sure which self that would be. I am different now, and I'm ok with that. I can do a lot of things and have done a lot of things. I am not trying to prove anything to anyone, not anymore. But that isn't to say that things haven't shifted. After all, for at least the next several years, I will have cancer colds, where you have normal colds (though when I wrote that blog, it turned out to be strep, not a cold). I will be judged for my every action: my diet, my drinking habits, the size of my body, my use of household cleaners. I will try to avoid doctors like the plague because I feel like the medical community has essentially moved into my house and I WANT THEM OUT. Time for a pap smear? Excuse me, aren't I one of the 20% of American women without HPV? What are the other likely causes of cervical cancer, exactly? Why would I do some cancer screening I don't need? Oh, I guess because I like my doctor and I want him to see how well my hair has grown out.
I'll never have that long hair again, if only because the past two years have taught me that the two years it would take to grow it back are better spent doing other things. I'll never feel that my breasts are an erogenous zone. I'll always have that husband who will see them that way for his own sake, until once in a while I realize he is really feeling for cancer lumps, and then I will smack him in the face and yell at him because I don't want those two parts of my life to ever meet again. I will not have normal backaches after spinning. I will have less patience, not more. I will probably never be able to do more than 5 pushups in a row, or ever do pullups or chest flys, because my pec is burned and my pain, while so much better, is still chronic. I will have a 400% higher chance than you of developing another form of cancer because I had breast cancer before age 40. I have an 85-90% chance of making it to five years, meaning that there's a 10-15% chance that I won't live to see my 40th birthday, which is different than the way the odds look for you. Things other people care about will seem petty to me a lot of the time, though as I discovered yesterday, even the petty has the ability to come back to me.
For a while at least, I can live in that space. The one where my biggest concern for the moment is what perfume to wear to the bar where no one else will be. Decisions decisions. That place where the choice is obvious for reasons that are different than your reasons. The room where I smile as I spray myself with "Happy Heart."
That place where I think about other things. The world where Katy Did Cancer. And then didn't have to anymore.
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