Thursday, January 27, 2011
I really needed to write this blog last night, when I was feeling down and depressed about this whole cancer nonsense. But I was feeling, well, depressed, so I didn't want to sit down at the computer and get deeper into my thoughts. Instead, I am sitting here writing this today, and while my mood is not chipper (though I have never been chipper, right?) the day was better and I am farther away from that place I visited yesterday.
The short depression was precipitated by the fact that my hips have been just killing me recently. I mean, it's hard to sleep, I bought some aspirin--something I never take, but the only thing that works--and pilates has been tough. I wanted so badly to ignore it and just suffer through it, mostly because the pain was like a jackhammer to my brain, telling me:
I confessed my fears to Gabe last night and he said, well, what should we do about it? I had an even bigger confession to make. I told him, I can't deal with doing anything about it right now. I felt so guilty saying that, admitting that I just need to either assume it's the old wound or be in denial because I can't face the idea of having a metastasis that would leave me with only a few years to live. I am always the one who faces everything and just does what needs to be done. This time, I am so genuinely afraid of what I could learn that I want to enjoy this short time I've had since treatment ended. It's only been 6 weeks. I need more time than that!
The reality is, I think it's rowing that is doing this to me. I've only done the erg twice, and for the few days following each time my hips were just a disaster. I don't think I have the form right, and we don't really stretch after practice. I'm still working out in the gym and not stretching enough. In a normal life, or maybe not a normal one since it's me, but one that took place before May 4, 2010, I would just suffer through this pain knowing exactly what it was. Now, even that somewhat depressing thought--that enjoyable things can bring me great physical pain due to an accident that was outside of my control 25 years ago--is a walk in the park compared to the alternative explanation.
I feel this clicking in my pelvis as I'm walking to the elevator at work and my mind just won't turn off to what it could mean. And then my boss sees me and says Hi, how are you doing? And I find myself momentarily staring at her before I say I'm good. She looks at me a little strangely, but only a little. I play it off well enough.
And that's how it goes. I wait for the elevator like everyone else, but as I'm doing it I sometimes wonder if cancer is waiting for me. I go about my business, but that fear is there, and sometimes it is so tangible I can feel it. I know I am not supposed to say that anymore. Everyone asks me how I'm doing and I can honestly say I feel great. My hot flashes have gotten much better with that estrogen cream. I know that's what it is because I am now in the phase of not using it every day, only twice a week, and they are worse on off-days. But I exercise like a nut, I wear stylish clothes, my hair doesn't look that bad, and people look at me with this obvious relief so that I can almost hear their thoughts: "You look normal! I can talk to you again! That cancer thing was only a scare, a bad dream."
If only. I read all of these tales of people who survive cancer or something else and they start to appreciate all the little things in life or they only see the big picture. I don't think any of these people are real. I always did like the little things the most in life (the nectarine, my book and a chair) and I could see a lot of life outside of my own. But post-cancer, my life is just the same. I still have that perspective--it hasn't deepened, and life is still made up of a lot of little things. Some are just the drudging aspects of life. Work has its challenges. The house needs cleaning, food needs cooking, I need to try to find time to spend with my husband and god help me even my friends. My kids still need raising. I can't ignore all of these things and just smile wisely all the time with my new-found understanding of the universe.
What can I do? Ultimately I think I'm doing pretty well. I started reading the blog from the beginning a while ago and at some point I just had to stop. I actually started laughing. Did all of this shit really happen in the last 8 months? I couldn't finish it. There has been so much to go through, so many changes and losses and so much fear, which is really the worst part. I am already fearing my mammogram at the end of February, because again, I can't handle the idea that I might have to do this again. I am starting to like what I see in the mirror, even. (Though I will admit that while I can see this person in the mirror, or in her athletic bathing suit, or whatever, as a decent-looking individual, it doesn't look like me, like the old Katy, at all. Not to me.) I don't want to lose all of what I have taken back from cancer and go back to the dark days of chemo or face something even worse.
I want to just keep plugging along. I want to keep snapping at my kids and eating ice cream when I said I wouldn't and generally behaving like a normal person. Sometimes it is the little things in life that keep me going. I have been feeling very overwhelmed, in a somewhat normal way. I'm overwhelmed at work since I was gone for three months. I'm overwhelmed as a wife and mother who seems to be keeping everyone together, when I hardly am together myself. I feel like I nag my kids all the time and in addition to the normal guilt anyone might feel, I also feel angry at myself for wasting what could be some of the only precious time I have with them on bullshit.
And then sometimes, I can remind myself that my own feelings about the irrelevance of our day to day lives are actually the irrelevant part. What does that mean? Well, I want my kids to remember me as their mom, not their shaman. I don't want to bring philosophy and contrivance into a four year old's life.
As usual, I don't feel that I'm explaining this right. Here's an example. Lenny has a few cavities, even though we supervise her brushing and she doesn't usually drink juice or eat dessert (because she rarely eats enough dinner to warrant it). Gabe and I got in a big fight about why these cavities weren't taken care of when I was doing my treatment. This fight really blew up, because I feel like I had a damn good trump card for not having to take care of things for once, and now things are more difficult. Then Lenny threw a full-on tantrum the likes of which I've never seen from my child when I took her to get them filled--before any drill was even in the picture; she was just sitting in the chair freaking out. We had to leave, and now I will need to take her to a pediatric dentist tomorrow.
This whole thing struck me as simultaneously ridiculous, annoying, and a waste of time. I had little patience for the fight, even less for the tantrum. I got mad at my kid. I kind of wished I was a drinker for a few hours.
Then I was taking Lenny to gymnastics a few days later and I handed her a letter from that dentist. While we were driving I asked her to open it and read it. I thought she would struggle with it but at least see that the dentist cared enough to send a letter addressed to her, after not even charging us for the initial crazy-child visit.
And then she proceeded to read the entire thing to me. The only word she stumbled on was "convenient."
I could have been proud of my daughter's reading skills. I could have berated myself for being mad at a kid who is generally exceptionally good. She's not quite 5, after all. Instead, all I could think was, she'll be fine. If something happens to me and I don't make it out of this mess, she'll be fine. My yelling at her won't scar her, my best efforts won't make her less fearful. I have never feared the dentist, so I think that's just her. There is only so much we can take credit for when it comes to someone else's life.
What I said to her was "See? That dentist was really nice. She sent you a letter. And by the way, good job reading."
Augie will be fine too and I can finally see that now. He's started talking more. He has turned almost insufferably cute over the last few days, kissing everyone and laughing all the time and generally acting like the happiest kid alive. Who could tell he was ripped from his mother's cancerous breast just so many months ago? Only those who understand that he will never say the word pacifier. He could, and he knows what you're talking about, but that damn thing is still his Mama.
If the unspeakable happened, he'd be ok though. So would everyone else. I need to be able to put it out there that I am not looking at this Elizabeth Edwards-style. I'm not just saying "let me live long enough to see my kids graduate from high school." Because it's about me, too. Maybe I'm selfish, maybe I'm full of it, maybe I should just get over it, but in the end if I'm not all right I'm the only one who won't eventually be able to handle it because it's my life.
As I've said before, it's my life, staring me in the face. While these hips have been torturing me I just tell myself that one day, I will feel a twinge in my breast or a deep pulling under my arm (as I do all the time now) and it will simply be a reminder of what once was a daily struggle. I will do some new exercise, and my arm or my chest will remind me of how it used to be, just as my hips remind me that once I couldn't walk. I tell myself that, but sometimes I have those days like yesterday, and I cry and it makes me feel weak.
Most of the time though, I'm just doing the normal things people do, and I can even pass as a normal person on the street. When men look at me now--and it surprises me every time when they do-- they don't seem immediately ashamed. I get compliments on my hair. I sleep sometimes. And I do weird things like row, which might not be the best thing for my body, but I have my reasons. I spend an inordinate amount of time exercising for someone with my hectic schedule. I do it because every once in a while when I am really pushing myself, I feel my body just cooperate, and I feel and think nothing else. Someone barks orders at me and without thinking my body complies and is at home with itself, something that I have rarely felt, perhaps never felt, since before I started taking medication for epilepsy at age 6. My body is like a Chicago season--I am always aware of my own weather. I rarely have those days when the air is so perfect you can't even feel it. There's always wind, or cold, or heat, and I am all too aware of how my body works and what it takes to put one foot in front of the other.
I cherish those moments when I can trick myself into thinking my body is Hawaii. The rest of the time, I am just living my life, moving along, kind of like Emily Dickinson's chicken. My mom told me this joke and it made me smile:
Why did Emily Dickinson's chicken cross the road?
Because he could not stop for death.
Thursday, January 20, 2011
I am starting to understand what the new normal is all about. Just like with anything in life, cancer has become a part of the things that I think about, and I can't imagine that it wasn't always there. It's like that with kids, when you wonder what you did before they were born, though of course you remember perfectly well what you did, and it was normal too, but it just doesn't seem like YOU. I just can't relate to people who go through some life epiphany due to cancer. Life is full of so many things--things that need to get done, things that come up, that I don't know how I'd have time for any epiphanies. I don't think I've ever really understood the mindset of finding yourself. I remember once when Gabe and I were talking about how people go through that, and I said, I mean, who do you THINK you're going to find? There isn't anybody else there.
And that's the truth. You only get the one vessel, the one time around. Who else do you expect to be there after the dust settles? There's Katy, or there's not Katy, and those seem to be the only options for me. I'd like to choose Katy, please.
Cancer has just kind of melted into my life. That sounds strange, but it's true. Here's an example. I have been having some crazy aches and pains recently. My hips have hurt so badly I couldn't sleep. Now, I'm 35, and that might be one new reason right there. At the same time, I've just gone back to work, so I sit at a desk all day, which I haven't done in months. I wear heels--something I don't do at home (sometimes I think I like going to work just for the train, and the gym, and the shoes). And I am back at the gym, I started rowing, I'm still doing pilates and water aerobics and I work out at home. My body has a million reasons to be mad at me, especially with all the conflicting muscles from the different exercise routines I do. So I contemplate all of these things. And then I think, well, my hips hurt because of that "old wound", and arthritis is normal for me. Another minute passes and I think "Or, it's bone cancer." And then I say that out loud to someone, they give me all the other reasons for the pain, I shrug and keep cooking dinner.
It's just there, all the time, the way every thing else is there all the time that is your life. I never seemed like someone other than me because of epilepsy or my car accident, and yet I know I am who I am in part because of those things. I am still the same me as I was before kids and yet I feel that being a parent has changed me. I feel like life has just changed me, and cancer has just done it more obviously. Everything else is subtle. I think, for example, that I used to be really hilarious. Now I'm not UNfunny, but some of that got lost somewhere down the line, it seems to me.
Or maybe I just got harder on myself. Regardless, cancer did some obvious things--it took my hair, for example. People could see that change, so I couldn't hide what was happening, but is it really so different? I don't really know what I'm trying to say, except that while there's not much new related to cancer in my life, cancer is still here, probably to stay. If not in my body, then in my mind.
Now, mind you, it's there with its not so subtle reminders in my body too. About 10 days ago I started using the estrace, the estrogen cream I mentioned a few blogs ago. The purpose of the cream is for menopause-induced vaginal dryness. You use it every day for two weeks and then twice a week. It's worked for its intended purpose so far, but I also was convinced that it was helping with hot flashes. I had the only kind of epiphany I care too much about recently when last Saturday night I slept for more than six hours--WITH NO HOT FLASHES. Gabe was sick, so he slept downstairs. He came to bed around 6:45 in the morning, at which point I immediately had a hot flash. Ironic, no? So many nice things in life cause this horrible reaction: drinking coffee, having my husband snuggle with me, coming in to the warm house after a cold walk, eating a piece of chocolate. This time, I was actually thrilled when this happened because I realized that I slept all night without waking due to hot flashes! I can't remember the last time I slept more than six hours in a night.
Think about it. I've had terrible hot flashes since September. Before that, hell, until October, I had chemo-induced insomnia. Before that, there was the general insomnia brought on by, you know, worrying I would die from cancer. And before I was diagnosed, I was nursing a baby. So I think it has been almost two years since I had that much uninterrupted sleep.
As I said, these are the things that just melt into your life. I've gotten used to it. I will never get used to the nights with only 2 hours or less of sleep, but 4? I'm good to go then. Six is like an unheard of luxury. Gabe was trying to sleep on Sunday morning since the kids were not yet awake and I was shaking him saying, No hot flashes! I can't believe it! That cream is working on this too!
Wait, is that bad? Does that mean I have too much estrogen coursing in my body? Will this give me more breast cancer, uterine cancer, kill me somehow? Is this the reason my legs hurt (not the million squats or lunges)--do I have a blood clot?
Another pause. Nah. Gabe was looking at me like I was nuts.
These thoughts are there, mixed in with the happy ones. I wish I could say that this cream is a miracle worker on hot flashes, but alas, I started having them again the next day. They are lesser in severity, and I have fewer. It could be the cream, it could be that I'm getting farther from chemo. But I know something about my hot flashes now, doctors opinions be damned.
I'm still having cycles. Not periods, but cycles. Everyone and their mother can tell me this is impossible and I don't care, I know it's true. I was feeling some of the other side effects of ovulation--a little bit of my old libido, stomach upset, a few cramps--on the day of my good sleep. Every month I have this few days where I tell Gabe or my mom that my hot flashes are getting better, and I happen to have these other symptoms too. As soon as I say this, the flashes come back. Just about every 30 days. So there it is. My body, my fertility, my woman's hormones are just not going silently into that good night. There's still something there, just a hint, a reminder. Don't forget about me! This is what your body is supposed to do!
Does this mean it's possible that my normal cycles and hormones will return? Who knows. It doesn't seem likely, but how much of this trip has been likely? Not a damn minute of it.
Sometimes I get overwhelmed thinking about recurrence, or metastasis. And other times, I get overwhelmed thinking about the lack of those things. If that was it--all that shit I did for breast cancer--and I get to live the rest of my life, to some normal old age, why is that? Why would I get to be the "lucky" one? What did I do to deserve a life other people never got a chance to live? I mean, I know I can't say that now--I haven't even gone to my first follow-up mammogram, much less made it to the magical three or five year marks, but even if I make it there, these questions are in the back of my mind. Not exactly survivors guilt, but a general questioning of the randomness of life.
It makes me think about how the only things that my oncologist has said to me that were remotely comforting weren't intended to be. He told me at the beginning that I needed to do chemo to lower the chance of recurrence because I was triple negative but also because I was young, and since I could have 50 more years to live, that's 50 years to have a recurrence. He also said to me once that the hope was that I would live a normal life span, unless there are other things that happen, other illnesses, accidents. The guy just couldn't say, we want you to live to be old. You have a chance to see your grandkids. He had to throw that death by other means in there.
But still, I came away from that with this small notion that it was possible. And if so, that is kind of incredible. Here I am, 35. I've built some kind of strange career for myself. I'm married. I have two pretty cute kids. As an aside, I need to throw this parenting moment in here. I have recently learned that my daughter will be playing Dorothy in the preschool Wizard of Oz play. My shy girl! The nerdy one who reads at parties! The one who just today in the car was talking to us about how she complains about eating, but she eats more than she drinks, and she went on to say "whereas Augie would not eat much, but he would drink until he was full." We went on with more of the conversation, but something was sticking in my mind. Gabe said it out loud: "Lenny, did you just say "whereas?"
I got to see that moment. I lived to see it. I lived through that car accident. I came through epilepsy relatively unscathed. I was reminded of that today in water aerobics when a young woman had a seizure in the pool. I was turned away so I didn't see it happen, but I saw two other women holding her up. In all my years with epilepsy, I never had a seizure in the water. I talked to her and her family and I realized how I've seen her for years at water aerobics, and this, like all things, is just a part of life for her too. You keep going and doing things you want and need to do. Sometimes a seizure is thrown in there and enough people pay attention and you don't drown. And after talking about it with some baldish lady for a bit you say see you next week and you go home.
It still makes me wonder though. Gabe has said that he thinks it's unfair how many things I've gone through. Sometimes I think it's unfair how many people go through these things and don't live to tell or just struggle so much more with them.
God I look back on this blog and it's just like some weird figure 8 of mental jumps and it truly seems like much ado about nothing. My mind is just so strange like that. If anyone made it this far in the blog, I would be shocked.
Since few people will be reading, I've decided to include a poem again, because I have actually written a grand total of one cancer poem now. (It usually takes me literally years to share a poem, thus my hope that no one is reading this thing I wrote two weeks ago).
First, I want to explain why I decided to write it. I like this blog because it is a physical manifestation of the way my mind works, and it's funny for me to go back and see the evidence of that. I also like how the tool--publishing on the Internet--brings in other moments of absurdity.
I can look at my blog stats and see what search engine keywords lead people here. I'm not doing anything to advertise the blog, so I'm not very high up on the hit list among the 100,000 breast cancer sites out there. But every once in a while people find me. My favorite search was a google search for "I feel like I'm doing everything halfway."
Some poor soul got sent to my "Halfway to Done" blog about being almost done with radiation. I love the illogic of that and I can imagine the look on that person's face when the link came up and they thought "what the ***?". More than anything, I love living in a world where someone feels that life is just too crowded, so they do a google search with that phrasing, and they end up being sent to a bunch of random sites, some of which might be on point, but at least one of which is a rambling blog with this bald lady in some weird pictures, and they read it anyway and maybe that even makes sense in some universe.
It makes sense in my universe anyway. The mind makes lots of strange associations. One person's attempts for perfection lead to another person's radiation treatments for cancer. Words lead to other words, life to other lives. That's really what this poem is saying. I know that if that's all I wanted to say in this blog, I could have saved all these other words and just cut to these crisp 144. But I'm still experimenting with what I called an exercise in vanity in my very first entry, when I couldn't imagine how day 259 would be, and that it would seem like day 2590 and day 2 all at the same time. Make sense? No? Maybe this will.
Reading a Poem in the Oncologist’s Office
The poet had written maestro,
But I read it as metastasis.
It’s possible he meant master,
But why not change in form, spread of disease?
They fall off the tongue like close cousins.
Perhaps music and suffering are not so far apart.
You might say that my mind plays tricks.
I’d ask you if death is not lurking behind our other words.
Life can be like that now;
Normal is a double-take into a dark place.
If someone says beautiful or brave
I know they are saying interesting or terrifying.
Poets could learn something
From this total loss of control.
How a thing starts is not how it ends.
Your intentions and your meaning are not the same.
Besides, who would question my interest in definitions?
Who would blame me for always reading the last line first?
Friday, January 14, 2011
There's not much happening on the cancer front, although I did have my last appointment with my radiation oncologist this week. The entire visit lasted about three minutes. The doctor looked at my skin and said, "wow, you held up really well. I thought you might be one of the people to have a tough time since you're so fair, but you never know how each person's skin will react." I didn't tell him that I didn't take their advice to use Johnson's baby soap on my chest. I used Aveeno creamy baby wash and I was religious about using the Aquaphor goop. I also only used the prescription cream sparingly, and only at the bitter end, since it really is drying. So maybe I helped myself out a bit--until I decided to just rip off the last two pieces of tape after I was finished, in some manic attempt to not be marked anymore, and my skin just peeled off. But no matter--it healed in a few days. If I didn't have those blue tattoos and if there were no lumpectomy scar, you might be able to see me naked and not know I ever had breast cancer. Not that I'm offering, but you know what I mean.
It's interesting how my radiation oncologist never touched me in the entire time I saw him. He never even looked closely at the skin. He would ask, can I take a look? What, do you think I will say no, or be shy or something? Then he would look at the skin from his seat in the chair and give his opinion. I like him a lot--don't get me wrong. I'm just so used to people feeling my boobs all the time and moving my arms around like I'm a Barbie doll. So after his cursory glance, he took my weight--exactly the same as when I started radiation-- blood pressure, etc., and said "you don't have to see us anymore. Happy New Year."
That felt a little strange. You go into a place every day for months, and you hate going, but then when it's over there's a strange bit of morbid nostalgia. Only for a minute though. After a moment's reflection I was back to thinking about my rock star parking space in the hospital lot.
I have also been wondering about how I will continue to reap the benefits of these free massages and pedicures on Wednesdays now that I'm back at work. I work from home on "spa Wednesdays" but it's hard to find the time to get out of the house for that. It's the same with acupuncture, taking walks, etc. One week back at work and I gained a few pounds, all because I no longer have time to just devote to my health and being a stay at home mom. The winter's a drag for keeping in shape, that's for sure. It's so dark in the morning that I wonder how I used to get up EVERY DAY and go for my hour long walk at 5:30. Actually, if I didn't have hot flashes interrupting my sleep, making it so that on a really good night I get 4 hours, I would still do that in the morning. I love being out when everyone else is asleep and it's so quiet you can almost forget you live in a big city.
Speaking of that, most of those who know me well know how much I love Chicago. I love it in an illogical, blind way that enables me to ignore the corruption, crime, pollution and all the other problems. But lately I've been getting fed up. All of our governors, except maybe one, are in prison. We have a circus going on here for this Mayoral race, and the Aldermanic races are perhaps worse. The school day is the shortest in the nation for kids in public school, so I'm going to keep Lenny in Montessori for one more year just to avoid the babysitter nonsense and the scheduling drama that will ensue when she's in 1st grade. I feel like she's applying for college when I think about how complex it is to get into first grade. I also wonder where all of my ridiculously high taxes are going.
So there's my Chicago rant, from the girl who never thought she would ever leave. And realistically I probably won't, but it's in my mind sometimes. And then I remember why I love Chicago. I'm making plans with friends and I say, well, I can't do it Sunday. The game's on. While many of my girlfriends don't care about football, they have lived here long enough to understand that some of us do. I like how people can drive in the snow here. I appreciate the hospitals, and the clinic I wrote about last time. I also love how people look at adversity, and kind of have fun with it.
That's why I think I really am going to do this ROW thing. It's not that I have some innate desire to be on a crew team. I just like the fact that here in Chicago, there are a bunch of women of all ages who took a look at their experience with breast cancer and thought, huh, this is hard to deal with--what should I do? I know! Get in a tiny narrow boat in the freezing, dirty Chicago river and row! Of course that's the right answer.
And why not? I went to my first practice this week, which thankfully was indoors (no boats until late March). I learned that rowing is all in the legs if you're doing it right, which is why it's good for breast cancer survivors who are at risk of lymphedema in their arms. I also learned that I don't think I was doing it right. It's not a natural motion at all. I felt it in my back and my arms as well as my legs, and I was tired as hell. After an hour and fifteen minutes of practice, during which I and the other new lady got maybe a 15 minute break to talk to the coach, I was spent. At that point one of the women said "you guys did great! our first practice we only rowed for about 10 minutes!"
Now you tell me.
I think I'm in pretty good shape, back to work pudge considered. I'm relatively strong for my size and I work out a lot--I went to the gym three times this week at work and I did pilates one day as well. I skipped water aerobics, in part because I was sick with a cold but also because there need to be some days when I actually see my kids at night and don't leave Gabe in charge just so I can exercise. I'm one of these weird people who often watches TV while working out on the Bosu (great Christmas gift from Gabe!) or the ball. But this was such a different use of muscles it was kicking my ass. I got frustrated as well, since I knew my form was off. Every time I stopped to think about good form, I got slower.
But...I have this sneaking suspicion that I am going to love it and I will become insufferable, talking about catamarans and splits and the erg machine and on and on. We were in this old warehouse, and there were about twenty women and two men (the coach also works with a gay men's club). When I walked in, I asked who was in charge, and the coach wasn't there so another young woman showed me what to do. It turns out I am not the youngest one. This woman was 34 and there's another 30 year old. After me, the next youngest is 43, and there are women in their sixties as well. Apparently there was a 28 year old (!!) who just moved away. It sounds like maybe only one of the other women has small kids, which makes sense since they practice three times a week, twice at night. I will only be able to do it once, though if I get into it I might make some Sunday morning practices. It's just hard to get home after the kids are asleep, and they haven't seen me since we all were rushing four different places before work and school in the morning. I think I'm the only south sider involved, though I could be wrong.
When I started to contemplate the fact that most women I meet with breast cancer don't have small kids, I realized something. On the one hand, this is true because most women get breast cancer later in life when their kids are older or grown. On the other, if you are young and you get breast cancer, you very likely will never be able to have children if you don't already have them. It was a striking thought, something I haven't considered outside of being glad that I had my kids already. In a city like Chicago, a lot of people wait to get married, wait even longer to have kids. I was 29 when I got married. That seemed ancient to me, since my parents were done having kids at age 24, but in Chicagoland that's actually relatively young. Gabe and I met at 27 and got married almost exactly a year and a half later. Less than a year and a half after that Lenny was born, when we were 30. Only one of my friends had a kid at that time. Augie was born when we were 33, I got diagnosed at 34 and was told I had probably had cancer for that entire span of time--since we were married. Now I'm in menopause and my ovaries have been killed, and I think about how that must feel if you hadn't even gotten around to figuring out if you wanted to get married or have a family when those options were taken from you.
It's pretty shitty, that's for sure. It makes me feel lucky in a very relative way. There's no luck in having cancer. But at least it didn't stop me from doing some big things that I wanted to do: go to grad school, get married, start a family. I hope it doesn't stop me from doing other things, like continuing to work, exercise, see my kids grow up, have a happy sex life, and grow old.
So this is just to say that I liked this group of women who get together to row without talking about cancer. I like how they didn't need to ask me when I finished my treatment because the state of my hair gives it away. Everyone else in the room had long hair, or if it was short, it was that way on purpose. It gave me a nice glimpse into the future. One woman who did ask when I finished treatment was shocked that I just finished chemo in October. She said it took six months post-chemo for her to have as much hair as I have now. It's strange how these types of conversations are comforting. I have been getting a little tired of everyone commenting on how my hair is a different color, especially because I don't think it is, but mostly because that's less relevant to me than the fact that I HAVE HAIR. I can even comb it on the sides. I have started using conditioner again. I don't have to draw my eyebrows on, and I have mascara back in the rotation. I know I look like I'm at a military boot camp or something, and I know that I was more interesting, more striking, and maybe even strangely enough more beautiful, when I was bald.
But I don't give a shit because now I HAVE HAIR.
It's fun to be around people who know what that's like. It's encouraging to see women decades older than me with lymphedema working out. It's cool to go to a place where your cancer experience is the rule, not the exception, but you don't have to talk about it.
(As an aside, one of the reasons that I put all these pictures on here is that it's useful for me to have this photo-journal of my hair, week by week. I scoured the Internet when I was first diagnosed, after I started chemo and once I lost my hair, looking for some evidence of when my hair would start to grow back. I found one video that a woman did, where she sped up time to show her hair growth post-chemo. It was incredibly helpful and made me a little less depressed. So maybe this will help someone in addition to me, but if not, it's gratifying for me at least! Also I can prove that I really do wear my grandma Marthagene's costume jewelry--who needs pierced ears when I have a drawerful of great clip-ons?)
So what do you think? Can I do it? Am I too small, too much of a lightweight, or too wimpy to deal with the frigid putrid water? Will I ever get the form right? Should I keep my hair short once it becomes a choice for me? These are the deep issues I've been pondering.
Friday, January 7, 2011
Just when I thought that there would be nothing much to say about cancer, a bunch of interesting things have happened. A few weeks ago I took the advice of the patient advocate at the hospital where I did radiation and looked into this unique opportunity at the University of Chicago. There is an ob/gyn who heads a clinic that focuses exclusively on women and girls and sexual issues arising from cancer. At first, I was hoping that I could get some help with my insufferable hot flashes. I learned that this is not the focus, but I decided to make an appointment anyway. While most of what I say in this blog is actually not that personal to me, it is mostly about sexuality, so don’t read it if that bugs you.
Before I get into what has happened as a result of this, I have to remark on how old the U of C hospital is. It is kind of unbelievable. The “clinic” itself is like the hospital version of a cubicle. There is no door, just a curtain. There’s a chair with stirrups instead of a table or bed. They gave me handwritten receipts, someone in the waiting area stole the only hat that fits my baldish head, and getting there was confusing as hell.
At the end of the day, I didn’t really care about any of that. The first time I went in for an appointment, I was mostly desperate about hot flashes, as I mentioned. I went back to acupuncture even though my freebies have been exhausted, thinking that maybe acupuncture helped with the severity of the flashes if not the overall presence. I have had several days of hourly hot flashes with several an hour at night. I started to feel like I was losing my mind, especially since I was just about to return to work.
The last few days have been better—ironically, AFTER I stopped taking a bunch of vitamins and supplements that are supposed to help. I still have them all the time, though. When I got to the clinic, I learned that we would focus on sexual issues mostly. I filled out a long questionnaire about my cancer history, general health, sexual history and current practices, my marriage, exercise schedule, sleep, you name it. I met with the female doctor and her assistant for over an hour. There was no physical exam—we just talked.
They were momentarily surprised that I was there at all when I told them how often I have sex. Some women come to us after they haven’t had sex for a year, they told me. I almost lost my lunch when I heard that. Why do women accept such things as normal? I told them that regardless of how technically normal my sex life seems, it is not normal to me. The frequency is less, and my libido is gone. It’s like a light switch just went off, and I feel like a different person. It feels different, and I find the whole thing frustrating and sad. Gabe is very patient and seems to be much less frustrated than I am, though he does feel bad that so much has changed for me. We have figured out what we need to do for things to be close to normal for me, and it has worked, but it’s still a struggle.
Why am I writing about this, which seems so “personal?” Because after that moment of surprise, once I unleashed all my frustrations, the doctor said, ok, this sounds very normal. Many women with cancer go through these changes. What is important is that it is different for you, and you want to do something about it. And I thought, if this is so normal, why doesn’t anyone talk about it? Forget cancer treatment—we don’t talk about menopause in general. I can’t watch primetime tv without 5 viagra or cialis commercials, and male celebrities are always out there pimping erectile dysfunction meds, but it is considered crazy to talk about an enormous life change that happens to all women who age, and that unfortunately happens to some young women due to chemo- or surgery-induced menopause.
So I’ve decided to say something about it. The doctor wanted to make sure that my childhood or relationship with Gabe wasn’t the problem. Do we have stress? Do we argue? Was I traumatized by my car accident? Um, yes, yes, and yes. Everything since May has been one big ball of stress and we have had some very tough times. I was afraid of dying after the car accident and a lot of other traumatic things have happened to me that I didn’t even mention to her. But that was all true for years before chemo came along and then BAM. I had a period, normal cycles, then the switch was turned and I was 55. That just happened a few months ago.
She gave me a bunch of suggestions on what to do. In fact, she gave me one of the best quotes of my cancer experience so far. She said that the best lube for women going through menopause due to cancer treatment is…olive oil, but you can’t use it with condoms. “It’s cheap, it’s in your pantry, and it doesn’t interfere with oral sex.”
Now, why did I have to wait 8 months to get this practical advice? You can tell me 50 different places to buy a wig or a headscarf, all of which I never even wore, but I have to go to this one specialist to get this basic information on something that relates to my every day life?
The next appointment consisted of some more talking and an intensive gyne exam. I am not one of those new-agey women who likes to look at herself with a hand mirror; in fact, I refused the mirror when I was in labor both times. Why would I want to see that? Talk about distracting—I have work to do here, I feel like I am in touch with myself enough, thanks, but I need to do the equivalent of pushing a watermelon out of my nostril so get that damn mirror away from me.
But this time I took the mirror, and a map of a woman’s reproductive organs, and the doctor showed me what she was looking for—muscle atrophy, tearing, all kinds of other stuff that would make any woman reading this cringe. Men, just imagine someone giving you an exam to determine if your penis or testicles were permanently injured or defective due to some crap you had to do for cancer that was unrelated to those parts of your body.
I felt this overwhelming sense of relief when I learned that I am still normal, for all intents and purposes. She told me that if I hadn’t told her I was going through breast cancer treatment, she wouldn’t know I had gone through chemo. My parts are all technically in fine working order, in good condition for my age and for someone who has had two kids. That is some of the best good news I’ve had.
That doesn’t mean things aren’t different, or that menopause hasn’t happened to me. We have gone back and forth on whether or not I should get my hormone levels checked. On the one hand, it would be good to know if I am peri-menopausal or menopausal. On the other hand, that wouldn’t tell me if I will stay in that state, get worse, or get better. And since my hormone levels were never checked before chemo, we don’t know what my baseline is. She gave me a prescription for a topical estrogen cream, which I am allowed to use since I’m triple negative. She had some other suggestions as well, some of which are practical, some not so much. In fact, she’s the only person in 25 years who has suggested that I do some physical therapy for my hips. She thought that might help with my arthritis and everything, and that it wouldn’t hurt with the sexual issues either. I don’t think I have time to do that, but it’s amazing to realize I never did any PT for that accident—they just told me to lie in bed until I could walk. My parents didn’t know how to help me learn to walk, and I was given some adult-sized walker that was impossible for me to use. So I went from a bedridden kid who needed to be lifted to go to the bathroom and turned to avoid bedsores straight to crutches.
At least in that area, I can see that medicine has improved greatly. That would never happen today—people seem to get physical therapy for everything these days. But in the end I think I’ve turned out ok. When I was pregnant with Lenny I asked the doc if I would be able to deliver naturally due to my issue with my hips. He said that would only be a problem if I had, like, broken my pelvis or something. Um yes, I broke it in several places on both sides. He gave me a surprised stare, then looked me up and down, put his hands on my hips and said “You’ll be fine.” I never did know how to interpret that, but it didn’t sound like I needed therapy. But you know, being unable to sleep soundly or do a decent pilates stretch is annoying, so the P.T. is a thought.
But back to the subject matter at hand. This menopause issue is so huge for young cancer survivors. Hell, it’s important for women in general, but it’s a really depressing outcome when you are going through breast cancer treatment (why kill ovaries to save breasts?) at such a young age. It’s a major problem, and yet every time I talk about this sexual stuff with people, I feel like I have to hide my real feelings. I just revert to saying “I mean, my husband’s 35 too!” to explain, and then I get these knowing looks and laughs. That’s all just a smokescreen though. Gabe’s sex drive hasn’t changed, his body’s the same, and he doesn’t seem upset or depressed about the state of our personal affairs. The truth is, it sucks for me, not for him. I feel like I’ve lost something big, and I feel old. It is also not something that is rare, or specific to me. The vast majority of women who go through chemo for breast cancer will go through a sudden, violent menopause. You are warned of this, just as you are warned that you will lose your hair.
But that’s where it ends. They offer you some egg freezing technology and send you on your way. There is no attempt to prepare you for what this means or how it will feel. There are boutiques, salons, counselors, websites, and all kinds of other things set up to help you deal with hair loss from chemo. Loss of your fertility and sexual function? Good luck. What’s wrong about that is that hair loss is cosmetic, and sexuality is an inherent part of identity. I have talked to all of my other doctors about this. My regular gyne was eventually sympathetic, but he suggested that I just wait it out and I will see my body go back to normal. My oncologist’s staff basically responded to me as if I was one of the women who hadn’t had sex in a year. Just try to ease back into it, they told me. I think they felt for me, but when I heard that it wasn’t even worth getting into a larger conversation. I’ll just stick with the clinic.
At my first appointment there, I was saddened to learn that there is a specific focus on girls. Maybe saddened is the wrong word—I am so glad someone is doing that. The doctor explained that some girls who go through cancer treatment before puberty have no idea what normal cycles or sexual feelings are like, and they don’t know what to expect. They literally don’t know what they are missing. That made me realize that while I will never feel lucky when going through this, it is all relative. I know what normal is for me, and I’ve had decades to learn and experience how great and important sexuality is. At least I got to have kids before my fertility was stripped away. I was already married when this happened, so I don’t have to figure out how to date with all this shit going on. My husband really likes me. I don’t have any of the other long term side effects from chemo that could creep into my life and make me feel 100. I got to have a childhood without cancer, though I had other things to contend with, I suppose.
I got to be an adult who could bitch about the bad things that chemo does to you. I wouldn’t have had the first clue when I was a kid—I remember. I would have accepted it, not known any different. I feel for those girls. As soon as she started talking about this I thought about Lenny. I thought about how they will make her do mammograms starting when she’s 24. While I would want any potential cancer to be found as early as possible for my daughter, I also think, my god, what’s the likelihood she’ll have kids at that point? I can’t imagine her going through menopause at that age. That’s taking the best years of your youth from you. I’m glad I didn’t find out I had cancer at the beginning, 3 or 6 years ago or whenever it started. I’ve only been married a little over six years and both of my kids were born in that time. I nursed those babies, got back into shape, lived a woman’s life.
That’s really all I’m trying to do, live a young woman’s life. And sexuality is just part of that. I don’t think this subject matter is that risqué. Clearly, I’m a married mom, so the fact of my sex life is not novel. What is novel is that there are apparently only two clinics in the entire country that focus on this issue—women, cancer treatment, and sexuality. I’m glad I live in one of the cities that has one. I don’t know that I will need to continue going there, but it was such a weight off of my shoulders to discuss this with someone who wouldn’t tell me that I was whining, or that I should just wait, or who made a joke about it or told me I shouldn’t complain. It was worth it for the validation alone.
Besides the clinic, i’s been quite a week of doctor’s appointments. I went to see the surgeon for a six month follow up (is that possible?) and my oncologist for the three month checkup. These appointments consisted of four different breast exams by four people. It’s a good thing that pregnancy, delivery, and then cancer took my medical modesty from me. Apparently, I’m doing great. No lymphedema, great range of motion in my arm, the radiation burns have healed, my breasts are very symmetrical (the surgeon was proud of herself—she said she was very pleased with how well they looked “considering how much I took out of there!”), my hair is growing back. Now I just have to wait until the end of February to get that first scan. It is such a cruel irony to make you go through all of these follow-up tests, so that you’re panicking all the time. Do they think we don’t feel our breasts for lumps? Why make you have a heart attack for a week straight every six months for years? It makes me tired to think of it.
It was a very surreal experience to be back in the same waiting room where I waited for chemo all of those times, knowing I wouldn’t have to actually go through chemo. I saw a bald woman in the waiting room, chatting with her friend, reading a magazine, and it was such déjà vu. I can see now why the baldness came across as ballsiness. There were dozens of women in this room who have cancer, and only one was bald, without a scarf or wig. And that woman was not me. She stood out, and I wanted to say something, but I decided not to, because she reminded me so much of myself that I thought she didn’t need anyone to say anything. There was no statement being made, she was just bald. And waiting for chemo. When her name was called, she rolled her eyes, and then I did say something to her.
Anyone who hadn’t gone through it could get slapped for that one, but she just laughed. I felt this sudden wave of relief, mixed with an almost palpable fear. I am not a cancer patient anymore. I am not one of the people waiting for chemo or radiation. I am not even here for a mammogram. To everyone else in the room, most of whom were at a stage of this journey that precedes where I’m at, I’m lucky. But all I could think was, my God, what if I have to do this again? What if I have to sit in this room, waiting to kill myself with poison again?
It’s just too painful to imagine. I know that sounds dramatic, but seriously—it is.
I am aware that there are worse things. A woman at water aerobics told me she was glad I finished my treatment and that’s what she said to me: “I’ve done worse things.” I didn’t know until then that she had had breast cancer. And you know, I could say I’ve done worse things, but I would be mostly lying. I told her I had recovered very well, except chemo put me into menopause and the hot flashes were driving me nuts. She’s an older woman, and she laughed at me, saying, but that’s just normal life. Um, no, not at my age, I thought.
So yes, I know it could be worse. I went back to work yesterday, which is going to be a big adjustment. I feel like a fish out of water there, but that’s not the story I want to tell. I found out that one of our law enforcement guys passed away while I was on leave. (The Fed has real police, with batons and guns and all, and we pass through metal detectors and have our bags screened every time we go into work. I would love to avoid the radiation of full body scanners, but I fail to see the big deal about airport security. So many people, strangers included, have seen my body naked, in the flesh, as a direct consequence of my medical ordeals that I can’t imagine giving a shit about someone seeing an anonymous image of me. Whether or not it’s effective is another issue.) He had survived cancer and Iraq. He was worried his cancer had returned so he went to get an MRI, and had a fatal allergic reaction to the dye that was injected in him for the test. He was 27 years old, extremely friendly and really seemed to care about everyone he met. He left behind a very young widow and two children, including a 5 month old baby.
The lesson could be, life is ironic, or that I am lucky to be alive, or something else. But I think the lesson is that there are no lessons, there is only life. He had gone through some terrible things and should have been spared more terrible things. Something so mundane shouldn’t be allowed to snuff out such a life of promise. But none of us has been asked permission for life to be what it is, so what is there to do? Perhaps we can just look knowingly at each other every once in a while, suppress a smile, say the only thing that is really important, because it isn’t important at all. Have fun.