Friday, December 31, 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
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
...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
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
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
2 trips to the emergency room
1 48-hour hospital stay
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
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.