Saturday, December 31, 2011

Day 605: Katy's 2011 Threw it in the Bucket Already List

Everyone who has read one of these blogs knows that I’m not a big fan of the notion that cancer gives you some kind of free pass for selfishness, or for being self-involved, or for focusing on your own happiness to the detriment of everything else. That’s part of why I’m continuously surprised that people continue to read this, when it’s mostly about me, though hopefully, it’s never only about me. Moreover, I’m not into dwelling on the past, but I’m not yet in a place where I can be assured of a long future. So, I’m going to make it my prerogative to write about this year, this 2011, from my perspective--what it meant to me. It seems like an exercise in vanity to say the least, but oh well.

It would be an understatement to say that 2011 beat the pants off 2010. And yet, 2011 was hard and painful, and I went through some very dark times. I suppose one of the victories that I can claim is that I can admit to that, and move on to my list of accomplishments that are impressive if only because they are normal, and normal was hard-earned and surprising for me this year. Obviously there are other people lurking in the background of this entire list, and I think you all know who you are. Suffice it to say I couldn’t have done any of this alone.

So here goes! These are not in order of importance (Except for #1, I guess), but simply in the order that they came to me.

Katy’s 2011 Threw-it-in-the-Bucket-Already-List:

25. I went on vacation—several vacations, in fact.

24. I started a new job that focuses on something I know nothing about.

23. I chose a style and I stuck to it (Jackie O dresses in the summer, Silver jeans, “cropped” sweaters and shirts that actually fit my short torso, heels even though 5’ of my 5’5” is legs, Issey Miyake perfume)

22. I figured out how to function on practically no sleep at all and refused to use being tired as an excuse; on a related note, I tried not to make excuses if the reason was “I don’t want to do that.”

21. I convinced a ten year old boy that a woman can, indeed, throw a perfect spiral.

20. I decided not to grow out my hair.

19. I bought a house, without worrying about selling the other one, and now I have the library, reading nooks, porch, laundry room and clawfoot tub I’ve always wanted, regardless of how much less money and sanity I have to show for it.

18. I learned how to row a long, skinny boat.

17. I found I didn’t entirely mind my newfound sentimentality; it matched nicely with my strange new tendencies to kiss friends, rub my kids’ backs, and let my husband paw at me all the time without wanting to slug him.

16. I overcame my fear of heights.

15. I wrote a few poems, along with 55 blog entries.

14. I came out of menopause as suddenly as I was thrown into it, and I re-discovered the amazing, natural, frequent sexuality I had always had and didn’t fully appreciate until I’d lost it.

13. I accepted, on a real and somewhat sad level, that I will never have any more children, not because I can’t, (see #14 ) but because it is simply not the responsible thing to do in our situation.

12. I got rid of every single item of clothing that was too big for me, including all of the maternity and nursing clothes, and donated all of our baby gear (see #13).

11. I reconnected with a bunch of friends I haven’t had contact with for years; forgave some people; and finally let others go.

10. I came up with an idea for a cancer-related nonprofit that I could not possibly act on because my life was just too busy.

9. I tried out a lot of new recipes and enjoyed eating every bite; I even figured out how to make a select number of really good cocktails.

8. I made some new friends, including a few who, based on the demographics, what we have in common, and the whole set of social norms, shouldn’t have become friends of mine, but did anyway.

7. I learned how to ride a bike.

6. I discovered that it is actually possible for me to become a “fan” of something, to venture into near-obsession territory, and I became a dedicated spinner (incidentally, that happened before #7).

5. I watched my son do so many things for the first time: speak in full sentences, dance, sing, go to the bathroom, defy me, put on his own coat and shoes, learn his letters and numbers, and generally do just about everything he will need to know to be a healthy human being for the rest of his life.

4. I saw my smart, thoughtful, empathetic, beautiful daughter become herself; the fact that it was hard for me to see her as a full person rather than a child prior to this year was due to my own parental blinders, not her lack of completeness.

3. I pushed until I got someone to listen to me, and I worked through the excruciating pain and scar tissue and muscle weakness, and I re-taught my body to do things, however gingerly and imperfectly and infrequently (look mom! I can do an extended arm plank--on the left side!) I thought I would never do again.

2. I really didn’t change, though many things about me appeared to change; I just learned how to shift the focus a bit.

1. I lived another year.

I realize that this is the time of year when most people make resolutions for how they will improve themselves, or at least their behavior. But I had cancer, and I don’t think I have to do that anymore. Though come to think of it, in 2012, can someone teach me how to drive stick?

Have a Happy and Healthy New Year, everyone.

Monday, December 26, 2011

Day 600: That's a Lot of Days

Six hundred days and two Christmases later, I guess I should just be saying hey! I made it this far, I've lived for a little while, haven't I? And that's true. That time has really kind of flown by though, no matter how much it seemed to drag when I was sick and terrified and too skinny and burned up and generally desperate for cancer treatment to end. It seems like hundreds of days, but it could have been hundreds of minutes. Back in May of 2010, I didn't know if I'd make it to Christmas, and even when I thought I probably would, I didn't know if I would have advanced cancer, or any breasts at all, or how it would be for me. I couldn't know how deep into menopause I would be that December, how I would hit my physical nadir with the lack of eyebrows and eyelashes and the ridiculous growing-in hair, and how it wouldn't even seem that strange to me, as it was just another of the phases I got used to like you get used to everything in this life.

And last Christmas I couldn't imagine how it would be in 2011, that my menopause would entirely disappear and I would have the regular cycles and sexual drive and function of a teenager. I couldn't imagine getting compliments on my hair and realizing that I will probably never go back to having long hair again. I couldn't imagine being in just about the best shape of my life and feeling better than I ever have, not when I felt so god-awful and tired--not just menopause-tired, not post-radiation tired, but tired of all the bullshit and how life was so much about just getting through the days. I couldn't know what it would be like to break through some of that scar tissue, to eradicate some of my chronic pain, to be able to do push-ups again, albeit on the wall. I couldn't have predicted that we would make the crazy decision to buy a big new beautiful house, that last Christmas was the last one we would spend in the house we lived in when we got married, the house that welcomed both of my newborn babies, the one that housed me during all my treatments, the one we spent seven Christmases in as an engaged couple, newlyweds, young parents.

I remember leaving a New Year's eve party early last year since I was so exhausted; how could I know I would host my own 2011 holiday party two days before Christmas, and that I would volunteer to cook and bake for all 60 people? That I would wobble around in some stilettos, just a little bit drunk, not even knowing or caring who was coming in and out of my house? Last Christmas, I was just a few months into being able to eat at all, and the thought of drinking was just a nightmare. I couldn't really hang around people I didn't know that well, because I was frankly a little scary and people didn't know what to make of me, and I wasn't vain enough to hide it, and I didn't care enough to ignore it, so a lot of times we just stayed home--by ourselves.

So clearly a lot has changed. It seems almost impossible that I had cancer, in a sense. The scary thing is that it seems that way to everyone who has any kind of early stage cancer. Some people get to keep that sense of wonder, that cosmic hand wiping your brow as you realize what a bullet you dodged. Of course, some people don't. Some people get through horrible treatments with as much vim and vigor as me, and then cancer returns, and they suffer again. Some people don't make it. You don't know which of these people you will be until you're at the end of your life and you either say, huh, this sucks, I should've lived to be 40, or you say, well damn, here I am in my old age, and I made it! The fact of my health right now is nothing more than that, a gift I am happy to accept, for now, for however long I have it.

And so, truth be told, many things are actually the same. In last year's Christmas blog I wrote: "There was a time back in May when I wasn't sure I would get to see this Christmas... I still wonder if it's my last Christmas, even though I know I'm not supposed to admit it." I also wrote: "I'm proud of some of the things I did. When I wanted to lose my mind, I just exercised. Compulsively maybe, but there are worse things." and "The one thing Gabe and I want for Christmas is the one thing no one can promise. We want for me to be done with cancer, to somehow know the unknowable. Because we can't have what we really want, we will be cliche and want what we have." and I noted that cancer "puts you in a deeper place, which is hard, especially for someone like me who is essentially light-hearted. I don't take myself too seriously, but I haven't found the levity in cancer, I'm sorry to say. It just kind of sucks."

All of that is still true, and I still feel all of those things almost every day. It's just a year's worth of days later. Of course, part of the underlying purpose of this whole online experiment in who out there could possibly give two shits what Katy thinks of her life, is that I have given myself permission to say things that everyone actually knows but people rarely say because it just seems too corny: the days are almost irrelevant; you feel the same throughout most of your life. At some point, you are formed, you are the essential version of yourself, and it's hard to pinpoint when that is. I think it's a lot earlier than we realize, and that's part of the wonder of time, it's the thing we always would like to know about ourselves that we in some ways have to rely on other people to tell us: Who am I?

I posted on facebook the other day the following status: "so when Lenny saw that Santa was in Helsinki on the Norad tracker, she pointed out that next he would be in Estonia (because, you know, she knows where that is), looked good and hard at his progress, put her fingers on the map to make a scale and mused: "Huh. I guess he should get to Chicago, what, around midnight?" Lord help me."

I realized at that moment, looking at the Norad tracker with my not-quite-six-year-old daughter, that we would always essentially be who we were right then: The nerds who have slightly unnatural conversations, who are surprised by and resigned to our mutual interest in each other as people. But I didn't write on facebook about how sentimental it made me feel, because no matter how often I put that out there on this blog, I still feel like an alien when I tear up over such things. That's just not me--it's not who I am, who I have ever been. And yet, there it is. Something has shifted, or awakened, and I am a little different than the old Katy.

But I digress (as I often do). As I looked at my daughter on Christmas Eve and thought about her future, what she might use her brains for, what she might achieve, all I could think was: I hope this is not the last time she uses her intelligence for something that actually matters. What grades, tests, achievements, scholarships, work or even fame could possibly be as important as staring at something that you know in your smart little mind doesn't make any sense, using your knowledge of things that should be beyond you to understand, and finding a way to believe in the magic you so want to believe in, so that you could be giddy and excited and full of dreams of reindeer before you fall asleep? I'll tell you, I'm no dummy myself, but that moment is it, that is what you need to know about life and what you should use to understand it--it's right in front of you when you're five, and you can't even see it.

When I was about Lenny's age my parents took me to see the play Brigadoon. I absolutely loved it and at the end told my mom "that was the best dream I ever had." I knew it wasn't my dream, I knew I was awake in the audience, but it was, on the other hand, wasn't it? That's it--600 days or however many, that's the best dream, the best magic, any of us can have. The most any of us can do is recognize it. I hope everyone had a Merry Christmas.

Tuesday, December 20, 2011

Day 593: Never a Lovely So Real

I'm pleased to say that last night I had another of these post-cancer (I get to say that now, right?) epiphanies. I wrote a blog last week about forgiveness, religion, my imperfect reactions to this strange trip, and, among other things, about potentially corrupting virgins (which seemed to be the most popular aspect of the blog). I realized that none of that was nearly as relevant as the date when I wrote it--December 12. I completely forgot to write a blog on December 10, which should have been one of the biggest red-letter days in Katy's Cancer Timeline.

On December 10, 2010, I finished cancer treatment--hopefully for good.

My mom and brother were at my house last night when I mentioned that I felt like I needed to write a blog to demarcate one year post-treatment. My mom laughed at me: "Who'd have thought you'd ever forget a thing like that?" And that's what's amazing.

I planned to write last night after I realized what had happened, but Gabe and I got otherwise occupied and then I fell asleep. Before that, I changed into the same outfit I wore last year on December 10 and posed for some identical pictures of myself, alone, with Gabe, and with the kids. I intended to splice them together so the difference would be easy to see, but I got lazy about that too. If you want to see how far I've come, how much difference a year can make, just check out that blog:

Look at that cancer girl! No eyebrows or eyelashes, awful chicken-little hair, exhausted from chemo-induced menopause! Then there's the stuff you can't see, the burned chest, the small bit of flesh that ripped off because I was so damn happy, yet angry, about everything that I tore my radiation tape off as soon as I came home from that last treatment. I listed all the things I had gone through, all the procedures, all the bullshit, in that blog. Reading it makes me tear up even now.

And then this year, December 10 rolled around, and I went with my family on a tour of the new Rush hospital just for fun, where Gabe won an autographed Paul Konerko ball in a raffle, and then we went to a kids' birthday party, and that night Gabe and I went to a holiday party just for grown-ups and had too many pudding shots. And December 10 just seemed like another day on the calendar in this busy month of this busy year, where cancer and its vestiges represent something that absolutely happened to me (I can't get away from it, with the daily physical therapy and chronic pain; I never actually forget it), but that in some ways happened to someone else, some scary-looking lady who only vaguely resembles me.

I knew there would come a time when I could selfishly be happy for this medium, this virtual time capsule. If I hadn't written it all down, if I hadn't photographed everything, would any of this seem real? Can the virtual make life seem more physical? In very specific instances, I guess it can. When major things happen in your life, it's hard to imagine what life was like before--before you were hit by a car, before you had kids, before you met your spouse, before you were suddenly grown up, before you had cancer--even if you do remember your previous life very well. It's just so hard to articulate it and make those mental comparisons. Writing this blog for almost 600 days and putting it out in cyberspace gives me a good hard slap in the face to remind me of my own experience at the same time that it helps me process the things that have changed, and the things that haven't changed.

And that's how life is--things change so much, and yet it seems that they don't change at all, that you are always just the same. I thought about this as I met up with a friend over the weekend and we went out for Indian food before going to a bar. I haven't had Indian food since right after I shaved my head, when I was at the beginning of chemo and I felt that I had an appetite for the first time in 10 days. I ate a normal amount of not-very-spicy, vegetarian dishes, and felt absolutely horrible afterwards as my body rejected the very idea that I would eat like a normal, albeit small, woman. I blogged about how after our date, I forced myself to throw up by sticking my fingers down my throat. I weighed about 111 pounds and didn't exactly need an enforced diet plan. How strange to feel so ashamed and relieved at the same time, sitting on the bathroom floor with my husband shaking his head at the whole scene. And then, this past Friday, I just ate and ate, and had a beer, and then went out and had another one, and I felt just fine. Amazing!

While we were out we got into a conversation that was at its core about the nature of time and the unique position of our generation. There is so much in pop culture right now that is nostalgic for the youth of my specific generation--the songs on Glee, the remakes of every cheesy TV show and movie, the hipness of moon boots and Ms. Pacman, the ungodly return of leggings. It seems bizarre to me, and somewhat sad. Who wants to relive their youth, really, at least the youth that existed the way it existed for many of us, with the absolute realness of life and the suffering and the hardship and the inability to control your immediate destiny, which is what youth is ultimately all about? Who wants to go back there, when you are in the place where you wanted to be back then but couldn't really imagine?

But after thinking about it, I've decided it makes perfect sense, this nostalgia that's taking over these days. In a way, we are the last pre-digital generation, and that explains about 90% of this current pining for the past. I think kids 20 years younger than me are in some ways nostalgic for my youth. They can't imagine how it was, and it seems so odd, it must be fascinating. We're the folks who showed up at college, and spent huge amounts of money to call our boyfriends back home long-distance from a corded phone to ask "do you have this thing called email? it's free. should we use it to keep in touch?" only to hear him answer "nah, what's up with that? I want to hear your voice." We did research using books and something called "periodicals" in the library, wrote papers on typewriters and word processors, saw our high school friends a few times the first year and then not at all. And sexy photos, sexting, and all of that? Huh? "No baby, I want to see you in the flesh." You know--the actual flesh. There was no substitute worth substituting.

And then those same boyfriends who couldn't imagine using email carried pockets full of change to call you from the payphone, and wrote you love letters with awkward handwriting, sometimes forgetting the stamp and having to give you the message in person. And you have a box full of such letters from various boyfriends, and from your friends, and even from your grandmother. Those letters are written on hotel stationery, napkins with various coffee shop logos, the back of cereal boxes. And you could gauge how much someone cared about you by how willing they were to read the letters you wrote, because you had the worst handwriting of any female on the planet, and your mind was too quick and convoluted to quip too easily on the page.

And when you said goodbye to someone, it was often forever. In that Kiss and the Story blog, I wrote about the boy I didn't kiss right before we both left for college. When he looked at me with that pained, bittersweet expression on his face and hugged me goodbye, that's what he was saying. Goodbye, Katy. Have a nice life. I wish I could have talked to you for hours before this, I wish I had kissed you before, because now I will never see you or talk to you again. Not, I'll skype you on Monday, we'll keep in touch on facebook. Will my daughter ever know what it's like to have a boy on the edge of manhood look at her like that? Does the fact that it makes me sad that she might not make me inescapably old-fashioned?

I know I sound 100 right now, and you all know I love my facebook and my virtual connections. I just think there's this strange acknowledgment of people my age who were the last to remember some of these things as they actually WERE, not as bits of nostalgia. The wooden phone booth? I don't love it because it's quaint. I love it because I've used it to call people from bars because I was a little drunk and I just had to tell someone something and he or she was the only person I could think of who would pick up the phone at midnight.

What does this all have to do with cancer one year later, now that it really is all over but the shoutin'? Well, this blog has enabled me to actually see what it was like, to remember how it felt, to go through all this crap over the last 18 months. And yet--and yet. It does not in any way replicate what it was ACTUALLY like. The photos of me last year on December 10 do not portray the me that walked around the streets of Chicago as if looking like that was normal, they do not portray the husband who honestly thought I still looked sexy after I was stripped of all the things that I thought made me attractive, they do not portray the looks I must have received as I jammed to Nelly Furtado's Loose on the daily drive to radiation. I know I don't look especially lovely in those photos, but maybe it was as Nelson Algren said about my beloved Chicago--you may well find lovelier lovelies, but never a lovely so...REAL.

You can look back, but you can't go back, and God help anyone who wants to do that. A year passes, and you can talk about what's changed, you can marvel at the things that remain, but the bottom line is that a year has passed and you were there to see it, and millions of other people can't say that because they can't say anything anymore. I could write about that, about what that means, but I could also try to show it, tell it, use it in real life to get someone to understand. The other day Lenny was whining about wanting something that Augie had, and I launched into this long, annoying mom lecture: "Lenny, you need to stop being jealous about the things that Augie does that are different. There are so many things you get to do that he can't do, because you're almost six, and he's only two and a half. When you were his age you didn't know how to draw, we wouldn't let you use scissors, you didn't do gymnastics and it was hard for you sometimes to use a fork. Be glad you're five. Be glad you're whatever age you are. Some people walk around saying, I wish I was young again, I wish I was a teenager again. But look at me, not me! I'm glad that I'm 36." "Why, mom?" And I answered, exasperated that every statement in my house has to be met with a question: "Why? Because! Because, Lenny...I earned it."

Monday, December 12, 2011

Day 585: Dear Abby

"Dear Abby:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, December 3, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, November 27, 2011

Day 570: For Maggie Daley

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, November 24, 2011

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

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

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

I'm thankful, this year, for eyebrows.

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

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

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

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

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

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

Happy thanksgiving, everyone.

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

Sunday, November 20, 2011

Day 563: Flying Home

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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