Friday, December 31, 2010

Day 239: Goodbye, 2010

I’ve never been so happy to get to the end of a year. Usually there’s a sense of wistfulness combined with the excitement of wondering what the new year will bring. Not this time. Sayonara, 2010. You were really not that good to us. I can’t think of another year with so much lost time, except for the months I spent in bed after my car accident. At least that lost time was in late fall and early winter, and I was a kid, so I didn’t understand time as well as I do now. We lost some of a spring and all of a summer this year, with a little bit of fall thrown in for good measure. I celebrated my son’s first birthday less than a month after being diagnosed with cancer and just days before my lumpectomy. Gabe’s birthday, my birthday, mother’s day (God what a nightmare that was, breast cancer walk and all), father’s day, the whole season of swimming and vacationing, which we didn’t do, Halloween, Thanksgiving—all of them with a big black C mark, marring the occasion.

Don’t get me wrong-- I’m happy to have made it to 2011. I know that many people with other forms of cancer do not make it 8 months past diagnosis. The hard thing about cancer treatment is how much you wish for it to end, knowing that the faster the time goes by to get you through it, the faster time has gone, and no matter how long you have, that time isn’t coming back. It’s still an incredible feeling to have it behind me, if only for a little while. Indeed, when toasting with friends over the last few weeks, people have often said that it would be hard to imagine that 2011 would be worse for us than 2010.

But here’s the thing--I can imagine it. My cancer could return, or metastasize. I might have to go through chemo again and it could be worse this time. I might lose my hair right after it has started to grow back, or I might lose one or both of my breasts. I could die. I can imagine all of these things, and all of them would be terrible, though of course only one would be permanent.

And yet I can’t control any of them, so I will assume that 2011 will indeed be better and that I will make it through another year. At least with every month that passes, I get a little closer to that magical three year mark. So far, it has been not quite 8 months. Twenty eight more to go! Will I feel like the old Katy by May of 2013? Who in the world can say?

It’s interesting how it is possible to learn to tolerate anything, to see things with the perspective of hindsight if you get the opportunity. I’ve said before that it is hard for me to believe that all of this has been real when I think about it. All of the fear, and the unknowns, have been the worst part. That and the damage that chemo did to me that hasn’t yet ended. I am still angry about killing my ovaries, going into menopause, having hot flashes in the middle of living my life—while taking a walk, cooking dinner, doing pilates, putting the kids to bed, having sex, driving, not to mention never sleeping due to having several of them an hour. I am still angry that my youth and fertility were destroyed for a cancer that didn’t directly involve my reproductive organs. But I am amazed at what I went through that ended.

It’s hard to explain—I feel like I’m not saying this right. It’s like when you go through a terrible labor and your baby is born, and you are eventually willing to do it again, because you know that you will get through it. Except it’s not like that, because I would rather eat glass than go through this again. But now that it’s over, I can see that I am more like myself than I am not like myself, or at least that I am not at all like someone else, you know? I would never have been able to see that months ago, before surgery, even after the second one, or in the middle of chemo. I would be beyond devastated if I had to do this again. But I guess what I’m saying is that I know now that I could do it, God forbid.

When I was in the middle of the worst part of AC, I went into exile from my family for a week since the kids had stomach flu. I was living alone in my mom’s house, and I called a relative who is a breast cancer survivor to talk about some of the bizarre things that were happening to me. I said I really don’t think I could ever do this again, it’s just not worth it. And she said, sure you could. You would do it, because you would want to live.

She was right, but I still have that nagging question that asks if this killing a mosquito with an atomic bomb approach is the only way. I got my Barbara Ehrenreich book for Christmas (we call it “Bright Sided” in the U.S., because the original title, which they still use in the UK, was deemed too offensive—it’s “Smile or Die”) and I’m going to check out another book called What Your Doctor May Not Tell you about Breast Cancer by John Lee, if I can find it. I’d love to have some partners in crime who agree with me about the notion that if we would accept that hormones and environmental factors can cause cancer, we could stop blaming people and start saving people.

Any way you look at it, I’m glad that I am entering into 2011 with an intact body and mind. I still have my breasts, and I’m happy about that. They’re smaller, but they were already smaller since I got smaller as a whole. The left one is even smaller than that, and there’s a dent, a half-moon shaped scar and some scar tissue that feels like a very small tire inside of my breast. But even without clothes on, they look pretty good. The surgeon really did an incredible job. I haven’t had to buy a whole new wardrobe to figure out how to deal with my misshapen breasts. I haven’t had to amputate a body part, no matter how “useless” it is deemed to be. (It seems to me that breasts are actually pretty useful, since I fed two human beings from them for a total of 18 months, something that can’t be done with testicles, or feet, or arms, or anything). The scar from the sentinel node biopsy is almost invisible. I have no port scar, since I had no port. My IV arm looks normal. I don’t have lymphedema or neuropathy, so I can lift things and walk and exercise normally. My brain is still the same, from what I can tell.

And by God I even have some hair. We could start a betting pool on the color, but since my hair was always such a dark red I’d like to go with that idea. My eyebrows, eyelashes and all my other hair have returned. If I didn’t feel vaguely like someone else—like a boyish, yet old, version of myself—I could imagine feeling attractive again someday.

It’s at this time of year that we are all supposed to feel compelled to make resolutions, to change our wayward behavior. I was going to resolve to eat a low fat diet, since that’s supposed to be crucial for breast cancer survival, but boy have I done an atrocious job at that over this holiday season. But I will still add that to the list, because I’m more likely to stick to it if I said I would. Here are my resolutions for 2011:

1. I am going to try to eat very little fattening food, exercise for at least an hour and a half every day, and stay under 115 pounds if I can. No cancer recurrence can be blamed on lifestyle factors if I do that, since I can’t even drink a glass of wine anymore due to hot flashes and the only bad habits I currently have involve obsessive Facebooking.

2. On that note, I will try to engage with people less virtually and more personally. This year was a hard one for socializing for us for obvious reasons, but I am going to give it a go in 2011. That includes a resolution to try to meet new people or become friends with people who are friendly to me but not well known to me.

3. I am going to resolve not to try to figure out what I want to do when I grow up, because I now realize that most people just do something, and they turn around and realize that they’re grown up anyway without getting some life proclamation, and they need to support a family so they go to work, and that’s good enough. I know that’s the opposite of what I’m supposed to say, having survived cancer. I am supposed to find My Calling. I am putting it out there that My Calling involves recognizing that I have done enough non-work related things over the past few years (having babies, having cancer) that I can give myself a break with the career woman thing.

4. I am going to stand up for myself more and stop worrying about the consequences. I’ve learned that other things are far scarier.

5. I’m going to try to be more patient with my kids and my husband. I am an extremely impatient person, so this will be a tough one, but that’s what new year’s resolutions are for, right?

6. I’m going to keep writing, whether it’s this blog or something else. Maybe I will try to publish at some point, but I’m essentially lazy about things like that, so I don’t really see that happening. However, it’s a resolution, so I’ll put that out there.

7. I’m going to try to live as if I never had cancer, as if I was never bald, as if I wasn’t an ultrasound appointment away from the grave, while recognizing that I did, and I was.

I think that’s enough for me. Now let me make some resolutions for other people, specifically the medical community and breast cancer awareness groups at large. Is it my prerogative to do that? Probably not, but who cares? It’s my blog, damnit, so here goes:

1. Resolve to make some progress in the death rate for breast cancer, which hasn’t changed in decades, or in the diagnosis rate, which has only risen.

2. Do some work to pursue less lethal types of treatment, including less toxic chemo and less reliance on extremely dangerous and expensive drugs that seem to have little benefit, like Avastin, which has been completely removed from the market for breast cancer after years of putting women through hell. Continue progress on alternative therapies for side effects.

3. Start looking into how hormones really affect breast cancer. I feel that if I knew what my hormone baseline was—before going on the pill, after going off of it, before getting pregnant, hell, at least before chemo destroyed all my hormones—I would understand better why I had breast cancer. Even though I’m triple negative, all that means is that injecting one of three hormones into my tumor didn’t make it grow. There are a lot of other hormones, and it’s the interactions of things that trigger cancer, I believe. Maybe it wasn’t being on the pill for eleven years, but going off of it and getting pregnant quickly. Maybe the hormones from lactating interacted. All I know is, hormones have always affected me severely. They turned my hair curly, probably gave me epilepsy and then cured me from it. They made me unable to lose weight after Lenny was born—two and a half years with almost no progress, no matter how little I ate or how much I worked out—and then lose it like gangbusters as soon as Augie’s boy hormones jumpstarted my metabolism. I mean, I am 35, 5’5”, and I’ve had two kids. 113 pounds? How the hell ELSE did that happen? Please try to figure it out, doctors.

4. Start listening to women’s concerns about breast cancer treatment, years of mammograms with extra radiation, and side effects. Don’t tell us about any more “onlies.” In other words, no more telling women it’s “only” your hair, breasts, ovaries, libido, or whatever. I get to decide what is important to me, and I don’t think people with cancer have to have such low expectations that anything short of death is a welcome alternative.

5. Stop telling women how to behave if they get breast cancer. This is not a rite of passage, a gift, a sisterhood or some fancy club. This sucks. No one would tell a man with testicular cancer or prostate cancer to buy a blue teddy bear and sing kumbaya with his buddies. It’s fine if some women want to do those things, but they are no better or worse, no stronger or weaker, than those who do not.

6. And finally, STOP PIMPING BREAST CANCER. I could go on about what that means, but here’s the ultimate example: Some website was telling women to “show your tits for breast cancer.” Healthy women—not those with breast cancer—were being encouraged to send in pictures of their bare breasts to this site (to be distributed all over the world, without a cent going to the women who were pictured) so some pittance could be paid to some random breast cancer organization. Breast cancer as an excuse for free internet porn! I wish that women with breast cancer would have sent their pictures in instead, so you could see the breast-less chests of women with double mastectomies, some radiation burns, lumpectomy scars, lopsided, nipple-less reconstructions. I guess I’ve done my part there, by putting some bald, scarred pictures of myself here on this blog, all covered with sharpie. Maybe that’s a good slogan for me: Show your breast cancer for breast cancer! But really, enough’s enough. Find another way to sell products. Suffering, disfigurement and death shouldn’t be moneymakers.

There, I got that out of my system. Now on to a new year, a new beginning, and to a new normal for what's left of the old me. On a lighter note, on to a new year's party--Gabe made me vamp for the picture, in case you were wondering if I really had lost my mind.

To my old acquaintances, who shall not be forgotten, be healthy, and if something happens and you can’t be, just be yourselves, and have a Happy New Year.

Here’s to 2011.

Friday, December 24, 2010

Day 232: Christmas Blog

There was a time back in May when I wasn't sure I would get to see this Christmas. It's hard to think about that now, how unknown it all was. I didn't know if my cancer had spread, if I was BRCA positive, if I was going to have breasts or not at the end of the day, and I had no idea how everything would work out or if I would live. Every time there was a celebration I wondered if it was the last one.

I'm still in that place in a sense. I still wonder if it's my last Christmas, even though I know I'm not supposed to admit it. It is cliche to say that we are all in that place, but cliches are often true. Those of us with cancer are perhaps more in it, because the likelihood of dying is much more tangible than that "you could get hit by a bus" statement that everyone throws out when you say what is hard for people to hear. But in life there really are no guarantees.

But no matter--I made it here, to Lenny's 5th Christmas and Augie's second. Gabe and I have spent 8 Christmases together. We have started our own traditions, with Katy-style enormous and cakelike Christmas cookies, my green chile egg casserole and chocolate chip bread on Christmas morning, which is always at our house. I bought way too many presents, as usual. Santa Mouse still fills the stockings over here, and we leave him cheese. We will take our annual drive to see Christmas lights tonight after dinner at Grandma's house. Lenny will write the card to Santa herself. She has decided to ask Santa Mouse where he is from originally, since mice don't live in the north pole. She thinks perhaps it is Hawaii, since that's where the Magnum P.I. crew lives. (This is the same child who at age 3 came up with the idea of the initial Santa Claus. Last year I had to try to explain how she could get her picture taken with Santa. I said it wasn't really Santa, just someone you can take a picture with, and she said, so this is the initial Santa Claus? The one who comes before the real Satna Claus? Well, yes, yes it is, I told her.)

The kids have been sledding in the yard, and it's relatively warm and it's beautiful here in that snowy Chicago way. Much of 2010 seems like a nightmare, like something that didn't really happen. I remember lying in bed in late summer feeling like I wasn't even human, and it doesn't seem real that that happened to me. The really hard moments--that first phone call (I realize I have never written about what that was really like--it's like a black hole in my memory), waiting for the BRCA test, going to surgery, going to surgery again, starting chemo, shaving my head, having Gabe shave it again, realizing my period wasn't coming back, having my first hot flash--are just floating there in a cloud. I honestly think the best moment I had was the one when I decided to write this blog, because I would question whether all of these things really happened if I hadn't written about them in present tense.

The things that are hard to explain to people are those moments when my life just seemed so tangible I could almost touch it, like a twig you could snap. Does that make sense? Most of the time, you just live your life, and that is what I'm trying to do now. But sometimes, the absurdity and dreamlike nature of an ordinary life is right there in your face, and all you want to do is bat it away, but you can't because there really is nothing there. It 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.

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. I walked around bald even though I got a decent amount of crap for it. I did everything quickly and finished treatment in 7 months. I guess you could say I accepted what I needed to do, though everyone reading knows I didn't do it without questions or anger.

And I am very grateful for the people we had who helped us. It's a strange thing to receive help that you never wish to repay, but there it is. I'm grateful for my kids, who handled this all so well, as if this is just what life is like. Sometimes mom is bald, or sick, or she lives somewhere else. Sometimes she doesn't make dinner anymore or goes to bed before us. Sometimes she has surgery. Lenny, the child with the photographic memory, would say to me every day some variation of "only 8 more days of radiation, mom." As if I wasn't counting too. She told everyone at school when I finished chemo, and again when I finished radiation. I went to pick her up one day and one of the little five year olds congratulated me on being done with cancer treatment. Augie picked up an obsession with brushing people's hair, perhaps after I lost mine. He likes to brush it now that I have some, and it's somewhat gratifying to know that my kids will always have a memory of their mom like that, when they were still young enough to really believe I was beautiful that way, not because someone told them to say so to be nice, but because I am their mom.

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. To be together. To be as healthy as we are. To watch the snow fall. To eat. To remember what it was like to be 4 and try in vain to wait up to hear hooves on the roof. To hear Augie say "Santa" and "apple" for the first time (and then after saying it 10 times correctly to just look at us slyly and say "hrrmp phrum" when we ask him to say it again). To go sledding for the first time in years and wonder how we got old enough to have trouble getting back up. To get older, a little at least. To be.

Merry Christmas, everyone.

Friday, December 17, 2010

Day 225: Just one week later...

...and I already don't know what to say. And I don't mean that I have writers block, or that there's nothing left to talk about. I mean that in the way that you say it when something huge happens, like you find out a friend has cancer, and you tell her, I just don't know what to say.

Life overwhelms in its underwhelming nature these days and I don't know what to make of it. That's not to say that I am depressed or having a difficult time readjusting, but rather that I just realize that something has shifted in me and I haven't yet figured out exactly what it is or what, if anything, I need to do about it.

On the whole, life is normal. I am done with my Christmas shopping and I've wrapped most of the ridiculous number of presents for the kids. I've been exercising, cooking, trying to find games to tire out my 18 month old son who can throw a ball all the way across the house and move furniture to climb up on the radiator to attempt an escape and who flops down on the floor and beats his fists into the carpet in ecstasy if you say "touchdown." I took pictures at Lenny's holiday performance at school where my shy girl belted out the Christmas songs and then got up to the mic and said the closing remarks (she didn't even tell us this was going to happen): "Thank you. (huge pause). It's good to see you all....I hope you enjoyed the show....Happy Holidays." Why are parents such dorks that we get so teary and proud at these moments? I was actually more choked up at the idea that she is now grown up enough that she doesn't feel the need to tell us every little thing like that, than at the fact that she could memorize those lines and say them in front of a bunch of grown ups.

These are the sweet moments in life, I suppose. The rest of life is there too. I fell off a step stool the day I finished radiation and gave myself an enormous scrape and bruise all the way down the outer part of my right thigh. I almost burned my already burned body on a hot griddle on the way down. Gabe's aunt just had to put his cat to sleep tonight. Gabe gave up his two cats when he moved in with me in 2003 since I'm allergic, and Karen has had them ever since. I'm no pet person, but it even made me sad. Earlier this week, Gabe went to view his Grandma's cremation. We decided to donate the clothes we bought her for Christmas. He has cried, I've tried to figure out ways to console him and I realize I'm not great at helping people who are crying, and I wonder how he dealt with me crying off and on during these months, since that's something I had done but a handful of times in the 7 years we knew each other before this whole load of crap fell on us.

I went to work for the first time in two months, in order to go to the holiday party and see some folks who have been asking after me. I remember feeling slightly askew when I went back to work after having each baby, but nothing like this. The Fed has changed in some ways, and in other ways it is exactly the same. It's not you, as they say, it's me. Whenever someone asks me how I got into my line of work, I can honestly say that I have no idea. How did an interest in social justice, a talent at writing, and an essentially nerdy nature turn into financial research? I remember when I was a teenager, I really wanted to be a judge. Until I realized I would need to be a lawyer first, and I would have to go to law school and hang out with other lawyers. Now I know a lot of cool lawyers, but a lot of the time I think I got into the nonprofit-esque sector because I like the people who work at these places. And then I realize that I've been so busy getting home to babies and toddlers as soon as the workday is over, that I don't know that many people at the Fed. It's a fascinating place where I've spent a lot of time, but I feel like I'm going to have to start over and get to know it again in a few weeks, like I'm new at this, though I've been there for over 4 years. I hope there's still a place for the new, short-haired Katy. People did seem to like the hair at least. Or at least people told me I looked great. Isn't that what you say though? Someone has gone through chemo, or recently had a baby, or recovered from an accident, and you say, "You look great!" because you mean "you're not dead! or fat or bald or incapacitated or whatever the person was before. The standards change, and I feel like if I look halfway human now, it's impressive.

Yesterday's work holiday party hasn't been the only celebration around here, though. Gabe and I went to Union Pier, Michigan, again last weekend for a night to celebrate the end of cancer treatment. It was beautiful in a windswept, blizzard in the sand type of way. The weather was so bad we didn't have much of an excuse to do anything at all. We watched some stupid movies in our room after a guy named Lovie helped Gabe fix the DVD player. We went out to dinner, laid around in bed, took a walk on the beach, played cards, kept the window open in the frigid weather so we could hear the waves crashing in the morning. I thought about the kids I knew from the coasts in college, who were convinced the midwest was one big boring landscape. I figure none of those kids had ever seen anything like Lake Michigan in winter. It's kind of terrifying, actually. And it's almost unbelievably loud.

Anyway, we spent some time reading the guest book in our room, which dated back to 1999 or so. There was a lot of talk about romance, and "feeding the angels," which must be some kind of weird Michigan euphemism for sex. Why do people get all sly talking about having sex at a B&B? Yes, obviously that's something you do there, but you can also do that at home. Every time I hear that, I think, well, I hope you don't wait until you get to the B&B once a year for that. None of us is getting any younger, after all. I'm sure there are angels in the cities.

What do you think the next couple in room 302 will think as they read about the couple who showed up one night in December to celebrate the end of her breast cancer treatment? Well thanks for THAT downer. We're trying to feed the angels here!

I realize now that I'm finishing this blog entry what has made me feel so off-center. I miss it. What, you ask, cancer treatment? Of course not, that was a bunch of complete bullshit. I miss having a reason to sit down and write. I miss how compelled I felt to do this thing that I'm good at but am essentially lazy about, how it seemed so urgent and now seems so superfluous. This really is what reminded me that I was still myself, and I wonder who I will be if I suddenly stop. I'm in that in between phase, just like my hair (see me with Augie at the minor league baseball game this summer? Wearing my own hair like a wig; how many complements did that bald lady get on her hair that night?) But I'm here all the same, not quite cancer girl, not quite normal, halfway to whole.

Friday, December 10, 2010

Day 218: It's All Over but the Shoutin'

This day has finally come, and it feels so anti-climatic in a way. For months when someone asked Gabe how he was doing, he would say, ask me in mid-December, or ask me in January. And now here we are, December 10. Shouldn’t there be fireworks? When you see me walking down the street, shouldn’t I have that glow like pregnant women do? Shouldn’t I get something, some kind of a prize? I guess not, since there’s no guarantee I won’t be doing all of this again at some point. And all of this was a hell of a lot, and I realize now I was so anxious to get it done that I didn’t give myself any breaks. I found something strange in my breast and went to the doctor the next morning. He told me he was 99% sure it was nothing but gave me an ultrasound order just in case, and told me I could wait to have it done. Six days later I went in for the ultrasound that ultimately turned into a core biopsy and a cancer diagnosis the next day. A month after diagnosis—the earliest date possible—I had surgery; 19 days later I had surgery again; 2 weeks after that I started chemo and 8 days after chemo ended I started radiation. No rest for the weary, right? I wouldn't change a thing though, as I ended just in time--it's been cold and snowy here already, and we are set for single digit high temperatures next week after a big storm this weekend. I'm so glad I won't have to go out every morning to burn myself in that weather.

I actually did get something today—the ladies who did my radiation cheered for me and blew bubbles, as they always do when someone “graduates.” I really liked the people who did my radiation, and it’s a little strange that I won’t be seeing them every day anymore. It’s like some kind of Stockholm syndrome, but the captors were actually nice people. I had the same main tech for the first 28 treatments, and the assistant was one of three different women. This last week for the boost I was in a different, colder, more sterile room (the “dungeon,” they call it) with different techs. While they were still very nice, it wasn’t the same as the women who complimented me almost every single day on my clothes or my shoes and told me stories about their kids every day for six weeks. As if I was a normal person, a woman, not a cancer patient. My main tech gave me a big hug as I left. It must be a strange job.

It’s just so hard to believe that I’m done with cancer treatment. No drugs, nothing left for me to do but wait and get mammograms all the time and wonder if every strange pain is stage IV cancer. Bubbles or no, no matter what anyone says, life doesn’t change all that much. I will still make dinner and do laundry tonight, and there will be no huge life or career changes, no trip around the world, no new love affair, not even a drumroll. But wait, what did I write a minute ago…I’m done with cancer treatment! You hear that? Done! Take that!

Maybe instead of fireworks I could be my nerdy self and do some math, take stock of the situation. I can do that in conjunction with using my least-favorite cancer metaphor of the “war” or “fight” on cancer. Back on May 4th, three small, aggressive, rare-type tumors hiding insidiously inside my lactating breast were taken on by the following:

1 core needle biopsy
3 regular breast ultrasounds
1 3D breast ultrasound
14 blood tests (at least)
1 chest X-ray
6 mammograms
1 sentinel node mapping
2 wire placements in the breast
2 surgeries (three if you count the sentinel node biopsy) under general anesthesia
8 rounds of chemotherapy via IV
6 Neulasta shots
2 Neupogen shots
2 visits to the sleep clinic
3 CT scans
5 EKGs
2 trips to the emergency room
1 48-hour hospital stay
1 echocardiogram
3 tattoos
33 rounds of radiation
19 acupuncture treatments
58 blog entries

And too many side effects, manual breast exams and over the counter and prescription drugs to mention.

I wish they had let me keep the tumors so that I could laugh at the disparity of all that needed to be done to combat some lumps that when put together were the size of maybe two pieces of popped corn.

Who won? Well, it’s hard to say. Over the last seven months I have lost the following, to varying degrees of severity, duration and permanence.

hair, mucous, sweat glands, ovarian function, fertility, menstrual cycles, sex drive, chunk of the left breast, 5 lymph nodes, a bunch of nerve endings, ability to eat, ability to sleep, nice peach color on the left side of my chest, unmarked body (damn tattoos), use of one of the veins in my hand, ability to nurse my infant son, ability to have sex without lube, youth, potentially my identity-forming hair color (is it red? Is it brown? It had BETTER be red), a few of my friends and some of my self esteem.

I have kept a lot of things as well. I have always been able to think and remember, as I never had chemo brain. Therefore, I could write this blog. Radiation hasn’t affected me in any severe way and I believe the burns will be quite temporary. I maintained my complexion, skin color (except the parts that were radiated), original body weight and overall figure. I didn’t develop neuropathy. I never looked particularly un-healthy and my energy level has remained amazingly high, if I do say so myself. I had those times in the brutal months of chemo when I felt like I was sub-human, and yet I walked almost every day for an hour. I kept most of my friends and even found that people I didn’t know that well wanted to do something to help me.

I had a ton of support, but a lot of loneliness too. A lot of living inside this still-working brain.

I kept my sense of self, and my roles in life, for the most part, though everything seemed different. I worked full-time for 5 of the 7 months of my continuous treatment, though I did telecommute at times. Seriously, when I look at the list above, I wonder how I had time to do anything but cancer. How does anyone? And yet everyone does their normal things, for the most part. I was still mom, the no-nonsense one, the one who doesn’t take shit, but I was sick mom, bald mom, somewhat scary mom, at the same time. I was still married to someone who was crazy about me, but there was distance there at times, especially during chemo when he was terrified he would get me sick if he was too close to me, and I would die. When I wasn’t in the midst of the worst parts of chemo, I cooked and cleaned, and all along I hung out with people and made jokes and tried to walk around bald like it was no big thing. I kept my sense of laziness and lack of interest in what people thought right until the bitter end. I remained the pissed off somewhat cranky person who doesn’t like to be told what to do that I have always been. I was still a daughter, sister, friend, neighbor, still a stranger. I was still me, so it seems.

And yet …and yet. Things just changed. Some things will never be the same. I’ll have this fear of recurrence, and this responsibility, to check out everything that happens to me, for the rest of my life. I’ll have the knowledge that the “rest” might not be that long. But ultimately, I think if I could choose one thing that I wish I had never lost, it would either be my old sexuality or the ability to sleep. Isn’t that funny? Not the breast, or the hair, the eyebrows (those are coming back! Along with the lashes. I’m on my way to looking halfway normal someday). Those things seem less important. You can say it’s frivolous, but I wish sex was as easy and awesome for me as it always was, because now I know what it is like for many women, and now I know how special it was, that thing that I had, and it was mine damnit, not Gabe’s or anyone else’s, and while I haven’t entirely lost it and I still function normally under the general definition, I still wish I had it back. I also have not had a decent night’s sleep since April, for various reasons. I still have hot flashes all the time (I had one during radiation this morning), and the other night I had five an hour again, and was so desperate for them to stop that I lay in bed crying. It’s possible that menopause will reverse for me and these things will come back, especially the sexuality part, but the sleep probably never will. Just as no mother ever sleeps so lightly again after her children are born, just as I have never slept soundly since breaking my hips meant lying on my side for more than a few hours would be painful, cancer makes your mind race in ways that makes sleeping soundly a challenge.

There have been things that happened that were too painful to write about in the blog at the time that they happened, though now I see them more as chronicles of what chemo does to a person than something personal that happened to me. Two things come to mind:

The first time we had sex after chemo, at my insistence since I wanted us to be normal, I vomited afterwards. It was just too much for my body to handle. I still had a high sex drive then, and the experience itself was normal too. I just felt so sick afterwards, I could barely stand. Now, I know how it touched people to read about Gabe shaving my head. At that point, we had already had some memorable times of warped emotional intimacy, as evidenced by him standing naked in the bathroom talking to me while I puked after we made love. Talk about fucked up.

Another time, I took off what I thought was a piece of food from one of my teeth while I was brushing. It was actually a big piece of my gum. I had to go to an emergency dentist visit for that one. It turned out to be fine, and the gum eventually regenerated, but I was so disgusted, I almost quit chemo right then. At those two moments, I really did feel at war with myself, that my body was rejecting itself, and that is a feeling that is almost impossible to explain to someone who hasn’t been there. I had been there before—why can’t I walk? Why did they have to call in counselors to explain to other kids about me writhing around in convulsions on the floor?—but when I was younger and I didn’t yet know that it was possible for your mind to just not accept what was happening to you.

I have accepted all this, as everyone does. Look, it’s not about strength or moxie or bravery or resilience or anything else. You aren’t given a choice so you do what you have to do—just about everyone in this situation does. But as an adult, you have this nagging sense in your mind that doesn’t accept things. When I was a kid, I just took everything in stride. I didn’t know enough of the world to know different. I looked at today, and that was it. It’s hard to do that when you’re grown, especially when so much of your sense of your own future is wrapped up in your children’s future. What do I need to do to remain as highly functional as possible? To be a good role model of a responsible parent for both my kids, to show my daughter, and hell my son too, what it REALLY means to be a woman, in spite of what society says? To take away from Gabe the difficulty of thinking about how a motherless family would look, and go through what I need to go through to make sure the kids would have what they needed if I wasn’t around? How can I be realistic without being morbid? How can I give others permission to not behave the way everyone thinks you should behave when some bullshit happens?

I look through all this and I realize why the battle metaphor is so stupid, besides the misplaced machismo wrapped up in it. Battles end. I am done with treatment—for now—and I wonder what the hell I will do with myself, but cancer is just a part of me now, and always will be, even when 2010 has come and gone. I plan to make myself write this blog at least once a week, even if no one reads it now that I’m done with the technical treatment. I still have a lot of things to say about cancer, about illness, about gender, and some of these things are things I have always wanted to say but never did because I was too busy to sit down and write about them, or because I thought no one would give a shit.

I am not going to be one of those people who says that cancer gave me a gift, and I am not going to smile about the hope and inspiration it brought into my life. Maybe I should, but that’s not me, and those words seem pretty hollow, so if people wanted to hear that I assume they stopped reading this months ago. I will say that the one thing cancer did for me was give me a reason to write about something other than economic development, payments, or predatory financial scams. It’s not that this trip was worth it. It was total crap, actually, and the trip hasn’t ended, won’t for years, assuming I have years. But remember the scene in Field of Dreams when James Earl Jones goes into the cornfield? Why does he get to go? Well, maybe it wasn’t a privilege, but he went so he could write about it, and tell other people what it was like. I don’t think for one second that I’m as cool as James Earl Jones, or that I have some great wisdom to impart, or that I have some kind of absurd cancer calling, but someone or something pushed me into the cornfield, and in order to get through the maze, I have needed to write my way out.

Thanks for reading.

Sunday, December 5, 2010

Day 213

I have said before that having cancer does not give you a free pass for everything, or really for anything, else in life. Life still happens. The morning after I wrote my last blog, Gabe's grandmother, Harriette, died at age 90. She was like a mother to Gabe, and like an older Grandma for our kids. We moved to the south side in part to be closer to her and Gabe's aunt. She had Parkinsons for many, many years, and for the last two and a half of those years she was only able to leave her bed to go to the bathroom, with assistance. It is a testament to all those who took care of her that she got to die in the house she and her husband built, and that in all those years in bed she never had a single bed sore.

When I first read Gabe's online profile, before we met, I wondered why he was so elusive about where he lived. At the time he was living with Gram, helping to care for her. I found that out on our first date, and I began to understand how close Gabe was to his grandparents at that time. It was either on our second or third date when I invited Gabe into my condo. As an aside, I think that was all a ruse on his part. I had told him that I had made banana bread that day, and that it was awesome. He said it couldn't be better than his grandma's. I begged to differ, so he got to come in to my place, which was his plan all along I suppose. So all thanks to Gram, we made out for the first time standing up against the wall, while Gabe held a baggie of my banana bread in his hand.

He told me it was better than his Gram's, and of course it doesn't really matter if that was true or not. The rest, as they say, is history,

I think I met Gram shortly after we started dating, but I don't really remember exactly when--a few months later, I guess. We were going to a wedding in the south suburbs, and we stopped over there. I think the first thing she said to me after Hello was, You have such a cute figure! I didn't know what to say to that. Like any person thinking about another person's life, my memories are filled with things like that--random, seemingly insignificant things.I remember how surprised I was to see that the house was like a little shrine to Gabe, with pictures of him everywhere, especially from the time he was a baby until he was about 5; he lived with her during those years.

We have pictures of Lenny using a walking toy on her first birthday, right before she learned to walk, followed by Gram in her walker. Cycle of life, and all of that. As you can see, it's also pretty funny. She was so thrilled when Lenny was born, and for a while there she could hold her and play with her. She was never able to do that with Augie, but I am glad she got to know him over this last year and a half. I'm also glad that we went to see her the day after Thanksgiving, and I'm thankful for some of the things I learned from her:

you should assign colors to the kisses you blow to people;
you are never too old to have your hair done, or get a manicure;
you should try your hardest to always speak well of your spouse;
traditional family is kind of an unimportant concept.

It's too easy to say this is crappy timing. Any time someone you love dies is the wrong time. We miss you, Gram.

Needless to say, it's been rough around here. I have a small family, but Gabe's is even smaller, very very small in fact, and I feel a little guilty that as one of the main people left, I have cancer, and that makes things more depressing. Because it still is depressing. Cancer, that is. I've been thinking about the fact that cancer is what most people know of me right now, because of this blog. People who are interested in knowing how I'm doing rarely have to ask me, or call me, because they read about it here. This blog is not about any of the other parts of my life for the most part--I'm writing a cancer blog because I needed a way to deal with having cancer. I never felt like writing a parenting blog, or a financial blog, or a political blog, or a shoe fetish blog or anything else. That doesn't mean that all those things aren't still a big part of my life, but I wonder if when people think of me, they think of cancer girl, and if it's partly my fault because I'm putting the Big C out there in the public domain like this.

Because sometimes even though I try not to I see myself as cancer girl. I am so close to being "done" with my treatment and part of me just can't believe it. I have finished the photon part of radiation--28 treatments--and I have five electron (I might have that photon electron thing backwards) treatments left. The last five are the boost, radiation right to the tumor (in my case tumors') site. Unfortunately for me, the one part that is somewhat badly burned from the whole breast radiation is under my arm, and that area will be radiated this week because of where my tumors were located. That half of my chest is red in general, but not terrible--no open or broken skin anywhere, and it only itches above my breast. The breast itself feels fine and doesn't look too bad. Under my arm is bright red, and it hurts a decent amount, since you rub your arm against your body every time you walk or do just about anything. The skin feels tight and it hurts to sleep on my left side. The scar also throbs, as my nerves are repairing themselves from surgery, and I haven't been able to wear a bra in a while so the lack of support hurts too.

But honestly I would keep going with radiation if I could trade it for menopause. On Friday I'll be done, but it sure won't feel like it. These hot flashes don't seem to be letting up as they were supposed to do after chemo, so I'm afraid I might be stuck in menopause forever as a 35 year old. I have been feeling vaguely nauseous, and I've had headaches, so I'm stopping the Icool as of today. I didn't even take it for a month, so it didn't have time to work that well. That leaves me with nothing to help me sleep, and boy am I desperate for a decent night's sleep. Last night I slept somewhat normally, in spite of at least half a dozen hot flashes, and that seemed like a victory, in a shitty cancer type of way.

Every time I have a hot flash, I am reminded of what chemo did to me, and my treatment doesn't feel "done" at all. Everything about menopause just really, really sucks. I feel so damn old. I look in the mirror and for maybe the first time in my life, I really hate what I see. I have always felt pretty good about myself, perhaps out of laziness. That beautiful hair always made me a somewhat attractive person even if I didn't half try. Now I just look like an old man, and I feel like an old woman. I never thought I'd say it, but I preferred being bald. Then I was at least striking, if off-putting, in my appearance.

I used to see a young, vital, healthy, attractive person in the mirror. Now I really feel like my old-Katy self esteem has been stripped, and I'm left with this ugly duckling shell, burning up 15 years too early, wondering where her old voracious sex drive has gone, looking at the dark lines on my nails that mark each one of my Taxol chemos like the rings of a tree. And all I can think is, Ugh. I thought about putting some makeup on or at least drawing on some eyebrows (I've gotten good at that! people seem to think they're real) before taking this picture of my post-photon chest, but then I thought what the hell. Tell it like it is, right?

I went shopping the other day, and I realized that I am suddenly buying more expensive clothes. I was always an excellent bargain shopper, but now I feel like I need to try a little harder, to do more with whatever the hell I've got left. So I go for the designer winter coat because they actually make them in size 4, and I buy some size 26 Silver jeans, which would have put me over the moon a year ago, and I look at myself in the mirror and I still think, holy shit, I look like a boy.

Don't think I'm feeling sorry for myself, I just have this little space on the internet to keep it real, and that's how I'm feeling now. Maybe it's because this has been a depressing week, but really I think it's because cancer takes a lot of things away from you, and it takes a long time to process the leftovers, or to stop feeling like what you are is a bunch of leftovers that just aren't as good as they used to be.

Even some innocuous things are tough right now. The nausea and headaches I've had recently have made me worried about brain tumors, just as the back pain has me worried about bone cancer. I would like to agree with everyone who says this is mindless paranoia. Unfortunately, the spine and brain are two of the most likely places for breast cancer, especially an aggressive type like mine, to metastasize. So while other folks can have regular aches and pains, I feel like it's a part of my new normal, my new responsibility as a parent who would like to live awhile, to take these things seriously. After all, if I would have ignored that hard line in my breast or listened to everyone else who told me it was nothing, I would have died. Not figuratively, but actually. It's hard for me to say that, to believe it, but it's true.

Wow, I just re-read this and I won't be getting any PollyAnna awards any time soon! I can at least say that I've been going out more recently, and I've been more than able to talk about regular things. That's not to say that I lie about how I'm feeling, but rather that it's possible to just feel a lot of things at once. When talking about kids or marriage or jewelry or manicures I can be like my old self, but when people ask me how I'm feeling I usually say something like, I'm tired, but I feel ok. When someone comments on my hair I say that I hate it. I disparage hot flashes, and all of that. I don't lie about it, but I don't feel like I focus on it when I'm out in the world, either. I focus on it here, on this little 14 inch screen where I can write about this craziness so I know it's not just a dream, that this little man-boy, or whatever I am, is really me, somewhere in there, somewhere beneath the burns and the baldness and the exhaustion and anger, is that young and vital woman. I haven't lied, but you can lie to me. Lie to me! Tell me it's true.

Tuesday, November 30, 2010

Day 208: Tangled

I was debating which movie to refer to in my blog title today. I thought that Love and Other Drugs might be appropriate, except for the love part, and the part where I don't really want to relate to a movie about a young woman who knows she might soon die from Parkinson's and a guy who works for some evil pharm company. Tangled is good as well, and as of today, I've actually seen the movie. I did really like it, as did Lenny (though it's scary for a four year old in some parts), but I did have some issues.

My Disney princess issues go back a long time. I don't care if Lenny likes the princess stuff, because she doesn't actually know much about the stories. The stories themselves disturb me. (I like the songs though.) In college, a friend and I did a research paper on sexism in Disney movies. I'm not talking about girls being princesses, getting saved by Prince Charming, getting married, evil stepmothers, and all that boring stuff. I mean the violence and abuse: Ariel's legs getting ripped apart, Belle being imprisoned and starved by her "love," Sleeping Beauty and Snow White, you know--dying.

So this one was a big improvement over those, though the imprisonment was there and for some reason Rapunzel loves a criminal. But whatever. She doesn't seem interested in getting married, she kicks some butt, and she is a total Renaissance woman who can do everything, even if only BECAUSE she has been imprisoned. The issue I had this time was with the hair.

Long magical hair! Or is it? Long beautiful hair keeping her down! Or not? Blonde hair is beautiful, brown is ugly! Or the other way around? I didn't really get the message, except maybe, you shouldn't love someone for her hair. That's the message I wanted to make out of it though. Right before the movie Lenny and I went shopping and at least five different women stopped her--a 4 year old--to tell her how beautiful her hair was. I can't say I was jealous, because it wasn't jealousy, but it was recognition that I heard that for over 30 years and I don't hear it anymore, and I don't know if I ever will, since I think my hair is brown now. I like brown hair, don't get me wrong. I just have no concept of having it myself, or how that could be me. What is it like to shop without some kind of hair comment? Beautiful red hair! Sexy bald head! That's what I've been used to my entire life. Well, I'm finding out. Strange, ugly duckling hair--no comments there. Gabe thinks it's red. I think it doesn't matter, until I go back out into the world and realize that to everyone else, it does. We make movies about it, after all.

This is a long pontification on a simple movie, but it's better than the two other things I have to blog about. Hot flashes, for one. Apparently it's considered a serious problem if you have more than four hot flashes a day in menopause. Excuse me? I wouldn't even CARE if that was the case. How about six an hour at night? How about an hour of sleep every night for the last four? I have been so desperate I would have tried anything. I went back to the anti-depressant they gave me when I was on chemo which is supposed to reduce hot flashes by 60% or something if you use it for a month. Well, I can't use it for even a day. All night long, in addition to my hot flashes, my heart was racing and I was starving. I also felt nauseous, and I have all day today as well. I don't know if it's the drug or radiation. I sure as hell shouldn't have been hungry, because we ate a huge meal of leftovers from Thanksgiving, including pumpkin pie. But the hunger and heart racing just kept me awake, which is not the result I wanted.

So there's really nothing for me. All the doctors just tell me to wait, that my body will start to repair itself due to my age. It might take six months, a year. Are these people fucking kidding me? Very few women have such severe hot flashes, but it does happen. My mom has had them for 12 years. I've talked to other women who have them, including women who sincerely believe in alternative treatments. When they're this bad, nothing works but the hormones. NOTHING. And honestly, what do these women say about that?

I don't care if they kill me, I don't care if they give me cancer, it's better than dealing with hot flashes.

This might sound crazy, but that's because most people reading this have never had one hot flash. If you've had one, imagine having them every five or ten minutes. Imagine being fatigued from cancer treatment in addition to insomnia. Imagine how cold you get when you're bald after your whole body sweats and then is reminded that it's winter in Chicago. Imagine a one year old who doesn't know how to talk but can a strange version of "hot flash," since we had to find a way to tell the kids why I was turning bright red and looking like I would explode.

Love and other drugs my ass. I've done acupuncture, and I'm still doing it. I'm doing this damn icool anyway. I can't take the Effexor, I won't take neurontin (I had enough of the liver-killing anti-convulsants, thanks), I will never be allowed to take the hormones, and I am supposed to just wait.

If I was working right now, I don't know what I'd do. Yesterday I almost got in an accident on the way to radiation since I was so out of it. I put my gown on backwards. I stared at my pilates instructor as she told me how to position my legs as if she was crazy, though I'd done it several times before, because I could not register what she was telling me. She asked what was up. 45 minutes of sleep, I said. Girl, she said, they are putting you through the ringer.

I've done this before--I've had pregnancy insomnia, I've had newborns, I've had mono and chemo insomnia and everything. Those things ended, and that's what keeps you going through it. This might not end. It's depressing, and I still feel old, and frustrated, and when the flashes are terrible I wish I'd never done chemo and killed my perfectly good ovaries.

So there's the hot flash rant. I know I'm only six weeks out of chemo but I feel like I'm just doomed to the permanent menopause, as is has come on with such a vengeance. I don't care if you think it's sexist, but if men had these, there would be a solution that didn't risk your life. Or, everyone would be allowed to retire upon menopause. It's just the truth.

My other rant is a general triple negative one. Because of the menopause, I've been feeling angry about my dumb luck to be triple negative and have this aggressive disease that necessitated chemo. I'm stage one! No matter, kill the ovaries anyway, lose your hair, receive a poorer prognosis, be left out on your own to see if you live. And why?

Birth control pills.

I've always suspected it, and at least some real research supports my claim:

I was on the pill for 11 years, starting at 18 and stopping when we started trying to conceive Lenny when I was 29. The pill was great for me in some ways, as I had long periods that were heavy and irregular, and the pill changed all of that for me. Suddenly I had five day cycles every 28 days with no cramps, not to mention no pregnancy scares. For a teenager living 400 miles away from home that was a huge relief.

But on the other hand, I wasn't the best candidate for the pill. I always felt like I was one of the real AIDS generation, growing up with Ryan White and safe sex messages galore. AIDS was to me what cancer must be to others. So for probably half the time I was on the pill, I didn't use it for birth control purposes. It was backup, sure, but I always used condoms. A pregnancy isn't the end of the world after all, but any kind of STD just wasn't worth the price to me. And I didn't sleep with very many people, but I did have some boyfriends, and they knew I was on the pill, and never questioned the condom thing. Except one guy, who had been trying to get me to date him forever, and then he tried to get me to sleep with him forever, and then we were finally in bed and he started arguing with me about using a condom. I wasn't even mad--I just didn't get it. Was he crazy or something? There were better ways we could spend time. The argument lasted a few minutes. It was my apartment, so I just put my bathrobe on and went in the other room and turned on Law and Order reruns. That whole stupid experience was perhaps worth it to see the look on his face as he came out of the bedroom, naked and excited, saying baby, what's wrong? Well, it looks like you had better go fuck someone else, I said. And he walked his sorry butt back to the el.

Personal story, I know (not as deep as the poem blog though, right?) but that's what pisses me off about the pill and triple negative breast cancer, if that's the truth. Why didn't anyone tell me? Well, back in 1994 when I went on it, I'm sure no one knew, but I still think that this article is right--it won't ever be out there. Can you imagine what would happen to our society if women were told the pill could cause breast cancer, especially for young women? The pill was touted as such a gender-equalizing thing, but in reality I think what it did more than anything is let a lot of guys off the hook. I know that's not the case for many guys, including those from my personal experience, but it is true for lots of men, I'm afraid. Now, I'm married to the guy who thinks nothing of the vasectomy and couldn't care less if we use condoms as long as we're having sex, so there was no reason for me to ever go on the pill again after age 29. And now I can't, because of cancer, and he might not go for the vacectomy since I'd like him to wait in case I don't make it, or in case my menopause is permanent, since that would make the surgery irrelevant.

Any way you look at it, the pill connection is a bunch of shit, though I don't regret my choice to be on it. I didn't know. Even after I answered about a dozen questions about the pill on my health questionairre right after diagnosis (compared to one each on things like alcohol consumption, activity level and weight--the only three "lifestyle" factors that have been directly linked to breast cancer), when I asked my doctor if there was a connection, they looked me in the eye and said, we don't know but we don't think so. Same with clomid, which I took once in order to conceive Augie. It worked on the first try, so I doubt that was it--plus, I'm fairly certain I already had breast cancer at that point.

Is the goddamn birth control pill going to kill me? Even if not, can I be a cheerleader for the condom industry? I remember back in the day when I was a young teenager who wasn't having sex and I would buy condoms for my friends if they were too embarrassed. If that girl grew up to have cancer because of the pill, bitter irony never had a better name.

I've never liked the idea that was need to inject, or swallow hormones in order to prevent pregnancy. When I first went on the pill I had this big long discussion with my boyfriend at the time. I have to do this every day, and it will change my body, and I can't forget to take it, and what will you do? Well, I would pay for it and pick it up from the store for you. I said, of course you will! Now I was a pretty willful 18 year old, and it never occurred to me that he wouldn't do something, since it takes two to tango, right? It never occurred to him either, and for years that's what he did, but I still felt this odd sense of the balance being out of whack at the beginning. I grew to appreciate the pill, as I said, but it took time.

Boy if I had known, the balance would have seemed plain stupid. People complain about condoms and I think, what are they talking about? It doesn't feel as good, but it still feels good--it's still sex! And please don't talk to me about spontaneity if you have children. It takes away the element of surprise! And what element is that, exactly?

How about this? Condoms are the only birth control that prevent STDS and potentially CANCER.

Now of course maybe there's no connection, maybe this isn't true at all, maybe I have cancer because of hormones in my milk or meat, because I live on the south side of Chicago around a bunch of old paint factories, or maybe I just wasn't meant to live a long life. Maybe it's someone's plan for me to always live with this tangible knowledge of my body, what it feels like to breathe or walk, or what it can mean to have something wrong--a hard line that doesn't feel right in the breast, a back pain that could be something else, trouble seeing that's really seizures, arthritis that reminds me of my hip fractures, cold air reminding me I used to have hair. I can't understand it, why the whole damn thing had to happen, but the potential connection with something as unnecessary as the pill makes me kind of angry, you know? Kind of on edge, kind of unbelieving at the pettiness of it all, kind of, well, tangled.

Thursday, November 25, 2010

Day 203: Thanksgiving

I really didn't want to write a Thanksgiving blog. Often we say, there is so much to be thankful for this year. And that seems trite, or counter-intuitive, or something, for the year 2010 in the Jacob-Sterritt house. Of course I am thankful for my family, my friends, my body and my life. I will add that I am thankful for every person who reads this blog--the fact that anyone does is something that I still don't understand. But how do I interpret thanks through this cancer lens? It seems altogether too difficult. So instead I've decided to do something else.

Until I wrote this blog, I never wrote anything but poetry in order to remember my life. I don't see poetry as a high art form; writing a poem is similar to taking a photograph, calling someone on the phone to tell a story or writing in a diary. It is a way to remember, and what is memory? Memory is the mind's way of giving thanks for what has been seen, felt, or experienced.

These poems--none of them new, but I tried to find some that aren't too old--are a much better way of expressing what I'm thankful for than anything I'm capable of writing right now in my sleep-deprived, tryptophan-heavy, football-overdosed state. I didn't pick these because I think they're particularly good, and there are some I don't like all that much when I think about it, but together they say something, perhaps. Happy Thanksgiving.

One Month Old: A Birthday Wish for Lenny (2006)

Still air in the evening
Extreme weather arriving in torrents

The dust and clay of far away countries
A home you never want to leave

A childhood worth remembering
An old age worth the wait

Hearing the birds too early in the morning
Learning they’re birds, knowing it’s morning

Too many little things to keep close
Too much of the world you’ll never get to know

Having nothing to lose
Living through having nothing

A second language, a way to talk with your hands
Words you’ve forgotten how to spell

The first water of a parched August noon
The fire and smoke of December

Sun gleaming on wood through windows
The darkness of an empty street

An accident you emerge from intact
A lost moment you long to get back

The soft breath of a tiny impossible mouth at your breast
Letting go of unforgettable hands

Failure and love and grief
And remembering how it used to be

A hundred and one birthdays
A million moons

This is what I wish for you
Everything, and the time after

Lessons Learned from a Marriage: For Gabe on Father’s Day, 2007


California is dust, traffic and complacency.
Weather only shines in Chicago.


Being a man, or a woman, comes naturally
when you forget the details involved.

It is not necessary to learn fatherhood by example
if you know stars, lawns, Mozart and somersaults.


Parents can be two generations removed and share
none of your blood, but some of your songs.


It is possible to watch another person becoming
while the world falls away before your eyes.


We are always moving away from the sun, from each other.
The alternative is difficult to imagine.


The plot of the story is not the point.
The point is that I am telling it to you.

Commuter’s Lament (2008)

When I rode different trains
I wrote different poems.

Two straight lines turned into three
as I lied a little, to mix it up.

Late became world weary,
crazy ended up spiritual.

I’d make love and redemption
out of three tin cups.

I wouldn’t cover guns at my head,
hands up my dress or the friends I kept.

Words only flowed
from the ordinary

when the sharp rumble
where my feet should have been

caused the faithless to pray a little
made the ride home sweetly rougher

turned 6 pm into everything I’d want
to remember about the life I never had

over the wooden trestles
where the sparks burned blue

the screech lingered and
you had to go down to feel the real world.

First Poem for the Second Born (to Augie, 2009)

You laughed with your full body in sleep
before you were supposed to understand laughter.

Could it be
the curve of my chest
the light on the wall
a new voice
water on your face
a sudden breeze
your sister talking
the sight of your feet in the air
or knowing you’re separate?

Maybe the joke is on us.
Worried, unbelieving still,
farther from ourselves than ever.

You close your eyes and laugh,
unaware that a month’s worth of memories
you will never remember
will haunt our sleepless nights
with the vain desire to understand you,
or your joy in being new,
or the way things seem for the very first time,
or what it is to be,
or how things got so funny
in only thirty days.

Losing Weight (2009)

It’s a funny word, shed.
A small building that stores things,
a way to cast off for good
like the insides of bodies, our old selves.
These babies, they’re parasites.
Left with no room to breathe,
I only nibbled, yet grew.
Thirty pounds, nearly forty.
And now it’s five months later,
my son is here, still feeding off of me,
but more aware now
of the ways we love each other.

I am nothing if not his mother.
But somehow the pounds that were him
are shed, and ten more with them,
fractions more every day
and I stand each day in fascination
as these declining numbers
mark less of me.

My husband can pull my pants right off,
no zippers, and I lament those size 4s I gave away
when I assumed older meant more.
Running hands over my belly is weird,
to think what was stored here,
what I gained and cast off twice
to make two people now apart from me.

What’s left is equally strange.
Memories of twenty three,
some other man’s hands, or mouth,
feeling light, not feeling fabric on my skin.
These stretch marks are just reminders
and there are always reminders.
What I have shed I don’t want back,
but I wonder where it’s gone.

News (2009)

There is a world where news is made, where history occurred.

Kenyan hospitals imprison impoverished mothers.
We scrape leftover food from colorful plates.

1940s Leningrad saw cannibals hiding in the streets.
I braid our daughter’s hair.

Fifteen people were shot in this city last night.
Leaves fall softly onto our shoes.

Grief overtakes our friends, neighbors, the woman in the park.
Our newborn son has eyes that change color in the light.

Authors debate evil: Hiroshima or prison camps? Knowing or not knowing?
We make love every night.

We read in search of understanding.
Why were we given this life, and when will it be taken away?

There are too many days, or too few, depending on the circumstances.

Monday, November 22, 2010

200 Days

It seems like such a long time, and such a short time too. 200 days is way too long to have focused so much on cancer, and yet in terms of other things, such as the way the kids are growing up, it really does still fly by no matter what else you're doing. I should be officially done with the active part of my cancer treatment at Day 218. I will be doing the follow-ups for years, and I will still very much be a cancer patient, as I am now. Yesterday I was panicking because the pain in my spine is back. No matter that it went away for a month, that it's not there right now, that my son weighs 26 pounds and I pick him up a lot more or that I've been doing a new exercise routine. I'm in the new club now. Back pain? Bone cancer! That part is really hard. I'm just trying to ignore it now, assuming that I'm overreacting.

But I'm not really. Cancer crops up years later, where you least expect it, right when you think it's all behind you. I'm not going to focus on that now, because I am much more pissed off about the effects of chemo than of cancer itself today. Let me just shout out that I HATE menopause. I hate everything about it and how unfair it is that I have it at age 35. My hot flashes are a little better but still ridiculous. I'm figuring out how to deal with the changes in my sex life and libido, and even though I know I have a healthier sex life than many healthy people, no matter what anyone says I really HATE that part too. And boy do I hate my hair and my lack of eyebrows. I tried to figure out how to draw on eyebrows yesterday, because while my hair is coming in, my eyebrows seem to be thinning more if anything. I don't know if you can see it in this picture--do the eyebrows look bizarre? I've been bald for more than five months and I'm just now trying out the eyebrow makeup and I have no idea what I'm doing. I feel like I looked a hundred times better when I was bald as a cueball, with eyebrows. My hair is much longer than when I buzzed it off, but it's so fine and soft that it just sticks straight up and is not even thinking about lying flat on my head. Ugh.

I think my chemo-hating mood is exacerbated by the fact that I'm just starting to feel some radiation fatigue. I was told it would hit me right at day 20, and I had my 21st treatment today--2/3 done! This morning I'm just feeling exhausted, even though I did get some sleep. Don't get me wrong, I'm still planning on walking about three miles to my pilates session, but it might take me a minute. It also might storm, which would ruin my plan. It's been in the 60s here, warm enough to wear a skirt and short sleeves, as you see in the picture here. The temperature is supposed to drop 30 degrees today though. Ah, Chicago.

Anyway, my skin is doing remarkably well according to all the doctors and nurses, but it was irritated enough under my breast that I stopped wearing a bra a few days ago. I don't really need one anymore anyway, since I've lost weight even there, so I'll give my chest a break I guess. Aquaphor is still working for me, so I've just invested in a lot of camisoles and tank tops that will get thrown away when this is all said and done. No one tells you about these types of issues when you start treatment. Hopefully no one who reads this will ever need this information, but if you do, remember this: The cream will ruin your clothes, for good. Don't find out the hard way, as I did.

I keep hoping that with all the press around breast cancer, that things will get better or that there will be less mystery around the process of cancer. And yet I don't see any evidence of that. My acupuncturist, who had breast cancer 10 years ago, was talking about how she chastised her doctor when she had her lumpectomy because the whole process--the wire, the marking, the procedures you have before the surgery that they don't tell you about, how they leave you sitting in a wheelchair by yourself in the basement crying before they get you for surgery--was so terrible. I sent her a link to my lumpectomy blog as our experiences sounded so similar. I was glad to not be the only person to be pissed off about the whole thing, but also really sad. In ten years, nothing has changed, and no one seems to be listening.

Many people with other types of cancer might be pretty annoyed with what I'm saying. Breast cancer makes all the headlines, gets all the walks and the hope and all. Other cancers are often ignored or pushed to the side. But the hype doesn't seem to have changed much about the experience of having breast cancer itself, down to the stubborn refusal of the medical community to change its practices. Why will I be getting mammograms several times a year for the next several years when it has been proven that mammography is ineffective for young women, especially for women under 45? Why not ultrasound? When I think back to my initial denial--my one day of denial--on May 3 when I was in for the ultrasound that was supposed to show my clogged milk duct and instead showed two perfectly detectable round masses, and a third one in shadow--it was as clear as day. I didn't know it then, even though they were talking over my head about it, but my cancer was glaring in its obviousness: See this one here, at 2:30? And this one at 3? (They look at the breast like a clock, and your tumors get names for the time, but they don't tell you they're tumors right then. I wonder what they compare testicles to?) The mammogram that followed was almost pointless. I can still see that ultrasound picture as if it just happened five minutes ago, though at that time I had no idea what it would mean for me, for my life, for this 200 days.

I'm tired of writing now and need to get to pilates, so I'll end by saying that I hope that I will be able to look back on this 200 days someday. I don't mean to say that I hope I look back on it and laugh, or that I look back and realize that my life changed for the better or I felt the love or anything. I just want to be able to look back, to still be here to do that. That would be enough.

Wednesday, November 17, 2010

Day 195: Halfway to "Done"

Today marked my 17th day of radiation, so I am officially more than halfway done with this last part of my treatment. I just started to notice a little bit of pink on my skin; next week they might up me to the prescription cream. But apparently many people already have a skin reaction at this point, so I am holding up very well. The technician today told me that being thin helps guard against skin reactions from radiation. I have no idea why this would be true, but it would be the only time in cancer treatment so far that being thin was a positive rather than a negative for me, so I'm willing to take her word for it.

As I think about nearing the end of cancer treatment, I wonder what that really means. I will definitely be very emotional, happy, and in a celebratory mood come December 10 when I can mark the end of what will be over 7 months of continuous treatment, from surgery to chemo to radiation, with very little break in between. And yet, I won't actually be "done" at all. I will go to see my surgeon and my oncologist on January 4, and at the end of February I will have my first of many post-treatment mammograms. For the next two and a half years, I will have a high risk of recurrence/metastisis. For two years after that, they will continue to monitor me very closely. For the next several years, I will go to my specialists every three months, hold my breath, lose sleep, and generally go crazy wondering if this aggressive cancer will come back. I've heard stories of women who just finished chemo and found out that their cancer was back. Others have recurrences 10 years later, though that's rare with triple negatives. Our big hurdle is getting through the first three, during which time every backache seems like bone cancer, every headache is a brain tumor. And those are more positive than cancer spreading to your liver, which basically just kills you right there.

I feel like I'm doing pretty well with acting like a normal person, considering that this is the future I'm looking towards. I hope it gets easier, rather than harder, when treatment ends, but I wonder. So many people talk about how impressive it is to have gotten through chemo. But I ask you, how many people have you heard that die from chemo? I'm sure 99.5% of people live through it. It's horrible, but it usually doesn't kill you, at least not right away. The heart problems, the unknown effects of the poison, those probably take years to show up. Living through chemo means nothing for your overall ability to survive cancer. I'm hoping against hope that it will help me because chemo is the only thing I could have done to fight triple negative breast cancer, but if it were to come back or spread, what a piece of shit that will be for putting me through all of this for the last five months.

All of this! This damn menopause, for instance. When I tell people I'm in menopause or having hot flashes, they assume that I mean that chemo causes hot flashes. No, that's not true. Some drugs cause hot flashes. This chemo regimen kills your ovaries. Hot flashes are just a potential side effect of that death. There are lots of others, including changes in your sex life, your moods, your bones. But none of those should overshadow the killing of a healthy body part.

Same with this hair. Boy do I hate it right now. I much preferred being bald, especially when I had eyebrows. Now I think I just look like a pathetic old man or something. When will I ever look normal again? I miss being a normal-looking, even dare I say, a pretty woman. I'm sick of this, but I just can't wear the wigs. I barely remember how, and even though I hate this current look, I at least feel more like myself. We put so much focus on how being bald looks that I think we often forget what's really going on--again, that chemo killed my hair, down to the follicle, because it's such heavy poison.

I feel that there is a lot of forgetting when it comes to breast cancer, or at least that there's a lot of misrepresentation. With all of the focus on hope and positivity, it's easy to think that this is some kind of easy disease. We talk about mammograms as if they are preventative, rather than detection screens. The death rate hasn't changed for breast cancer for 10 years. The chemo regimen hasn't changed much in 20. We don't know what triple negative breast cancer is or what causes it, though I have my own theories, ranging from testosterone levels to hormone changes brought on by pregnancy and nursing to environmental factors such as diesel fumes. And yet all of the hype around breast cancer leads people to believe that all this progress is being made, that you will be just fine, as long as you're positive enough in your attitude.

Tell that to the women who die from this disease no matter what they do. Tell that to me, when I'm at the beginning of this "journey," when I've suffered, been disfigured, made my kids worry and my husband cry. Tell that to the family of anyone who goes through this. I don't want to focus on hope, which doesn't really mean anything, or on exciting new poisonous treatments. I want some progress to be made on prevention. How many people's lives will be cut short in their thirties or forties while everyone else was wearing pink? How many breast cancer survivors' daughters will have to start having mammograms at age 24, like Lenny will, if we don't find something better? How many people will lose their sense of self while the world at large tells us we're heroes?

I think that the real issue here is larger than breast cancer--much larger. It's all wrapped up in the idea that we have in the U.S. that we are a meritocracy. If you are successful, it's because you deserve it, and if you are poor, or uneducated, or sick, it's your fault. When people first learn I have breast cancer, they inevitably ask one of two things: Is that in your family? Do you have any risk factors? "Risk factors" is code for, what did you do? And if it's in your family, then you're just naturally doomed and that doesn't affect anyone else. No one seems to think that shit just happens and it's not fair. We don't consider that our society has a lot of artificial environmental stuff in it that none of us can directly control. Finally, we just can't wrap our minds around the idea that positive people die from cancer, and shitty cranky people live. Old people can live for years after a diagnosis, folks in their twenties only months. Whatever we do or don't do is not the point and is not what causes cancer.

Ir's hard to believe that, though, if we're addicted to the idea that we can control our own fates and that we deserve what we get. I think often about an old colleague of mine, a man who worked for social justice causes all his life. I kind of had a crush on this guy in the way you admire someone 20 years older than you. He was handsome, and bright, and extremely friendly and committed to the causes he had chosen. He was very serious, in excellent physical condition, very healthy, and never even swore. You could try to talk to him about sports and he would turn the conversation to civil rights and it didn't even seem annoying.

And one day he found out he had a brain tumor and he was soon gone, just like that.

The way you live your life doesn't always affect what happens to you, and that sucks. I guess it can help; I've come through cancer treatment fairly well so far in part because I'm in good shape and I'm very active and take care of myself. But it still knocked me on my ass and might affect me permanently with menopause, potential lymphedema, heart conditions. No amount of taking care of myself could prevent those things. I don't think I deserved it.

Don't think I'm feeling sorry for myself, now. I'm just reiterating my old theme: Let's stop talking about what a privilege it is to go through this, how strong people are, how brave. That's some U.S. talk right there. In other places I bet they say "cancer! wow, that's terrible, sorry." And even here, it's a gendered response. Do we ever tell a man with testicular cancer, hey I know you only have it in the one but let's take both of them just because, and if you don't like it, you're being vain? Do we tell men who become impotent from chemo, well, I'm sure you didn't have much time for sex anyway? At one point I was complaining about menopause to my gyne, and he started to say, well I'm sure your husband underst...and I interrupted him. What part of menopause is about my husband? I'm talking about ME.

No one wants to go through cancer, and once you are in a place where you have to, no one wants to think it will kill them. I can say that I worry about death without really believing that could happen to me. My daily life seems so far removed from that possibility. It involves things like my 4 1/2 year old daughter making a book at school--bound with cardstock and all. She wrote and illustrated the whole thing and there's even a page that says "I dedikait this book to my mom and dad." When she talks to her brother she says things like "I wasn't suggesting that you do that, Augie." Instead of me reading her one of the books I got her about kids with moms with cancer, she reads it to me. When we get to the part about feelings (this is a book for much older kids, but oh well), I asked her how she feels about my cancer. "Happy, because you're almost done." My life with her is often a marvel, because I wonder where the hell she came from and how she got like that.

Same with my son, but for different reasons. I think he has been reincarnated from a circus performer mixed with a rabid monkey or something. He has learned to climb onto the table in the dining room, he scales himself up to his high chair, will only eat if you give him a fork and let him feed himself, and will almost never let you hold him because he is physically incapable of sitting still. He's no dummy by any stretch and he knows everything that's going on, but he rarely has the attention span to sit quietly with a book. This picture is some of the only evidence we have of anything like that. Five minutes later he learned how to stand on the desk.

So my life is filled with that sort of thing. If I don't look in the mirror and if I'm not having a hot flash, I could almost forget about having cancer. Well, not really, but I sure as hell don't feel like I'm dying. So hopefully I'm not, but I know that other people felt the same as I do, and didn't last a year. Just like I know that other people were sure they would walk again after losing the ability, and then they never did. Just like lots of kids were convinced their anti-convulsants would work, and they got brain damage from all the seizures anyway. Did I deserve those positive outcomes from those bad situations? I sure as hell did. But so did a lot of other people for whom life turned out differently.

This is all just a long way of saying I'm almost done but even so I won't really be done. I've been feeling very introspective recently, so sorry if this blog is too deep. Maybe it's a good distraction from this God-awful chicken little hair. How can something that feels so soft look so ridiculous? Is there a normal looking lady in there somewhere? If not, my appearance has finally matched my personality...not much normal going on there, I suppose.