Friday, February 25, 2011
Sometimes when I sit down to write this weekly blog, I wonder how in the hell there can be anything left to say. There's no news on the cancer front, which is positive I suppose, and no really strange things have happened in the past week. Unless you count yesterday, when I was walking back to work after having lunch with a friend whom I haven't seen in about two years, as she was in town visiting. Out of nowhere, a guy who looked relatively normal put his hand on my head and quickly swiped it up as he was walking past me, all without saying a word or looking directly at me. This is hard to explain in words, and it was hard to explain to Gabe why this disturbed me--outside of this general theme wherein I don't like to be touched by strangers--until I said "it was like a scalping motion."
So that was disturbing. I'm not sure how that's related to cancer, though it makes me think I still look strange or these things wouldn't happen. I started to feel better about my overall ability to blend in after that weird experience at the bar that I wrote about in the last blog. When I went to vote, the woman at the polling place looked at my I.D. (the picture was taken maybe a week before Augie was born--I look huge!) and said "Hair's gone, huh?" I was about to say something along the lines of yes, I know, this wasn't my choice, when she went on: "Getting ready for the summer! I don't blame you! I'm sick of this winter." Then a waitress at a restaurant up north who knows what I used to look like but doesn't know I had cancer told me "that haircut looks really cute on you!" So perhaps I'm not such an obvious Cancer Girl as I thought.
I have been thinking about cancer not from my own perspective recently, but rather from other people's. Lenny has been asking a lot of questions about whether things happened "before we knew you had cancer." I always answer her honestly and then I say, but why does that matter? She never explains. It makes me wonder how different I am, how different I look, and what that means to my kids. I was looking for pictures of us before we were married so that I could show Lenny that I was not really that different even before she was born. I only found a few photos. There's a huge gap in the digital photo library between right after Gabe and I met in early 2003 and when we went to visit my brother in Hungary in 2005 8 months after we married. I think the photos just haven't been organized.
So I found this picture of me in a swimsuit, taken two months after Gabe and I met when we went to Baraboo, WI, for the weekend for his birthday. This was supposedly the trip when Gabe realized he wanted to marry me, though luckily for us he didn't say so because that would have freaked me out so early in the relationship. It had something to do with me being a nerd. The story goes that I was looking at the sunset and instead of saying something romantic, I asked him if he thought it was weird that the sun looks like it is moving down in the sky when really we are spinning away from the sun. Apparently this is the type of thing he wanted to say but didn't because he thought I would make fun of him. So when I said it, he knew he would ask me to marry him one day. About 8 months later, he did. Eight months after that, we got married.
Anyhow, I was getting ready for water aerobics right after finding this picture last night so I posed like the picture and had Gabe splice them together. The idea was to show that mommy is still mommy, pre and post-cancer. However, I didn't show Lenny, even though Gabe said, wow! you look the same! Because truthfully, I just don't see it. When I look at this picture, I think, huh. Those look like two totally different people. I was 27 in that yellow suit, I'm 35 in the blue one. I've had two kids in the meantime and a lot of life has happened. But that's not it. I just look completely different to myself. Looking at that young woman on the beach, I think, she can't see yet how life will change! She doesn't know that in just a few years she will get pregnant for the first time, but she will also have cells start to mutate in her body that will lead her on a path no one wants to go down. She is, quite frankly, someone else.
And it's this ability to separate myself from myself that leads me to think about technology, about this particular format that I have chosen as my own kind of selfish therapy. This computer is like my own little wizard, bringing this strange experience of mine into other people's consciousness at the same time that it brings me a little bit closer, somehow, to myself. It is because I write this blog that I don't feel that I need support groups or therapy. I can give voice to things that I would never say out loud, even if I was paying someone to listen. And because it is public, other people know I've said it, so it must be true. It's immensely helpful in that way, though as I've said, it's alienating too. Or maybe it's just cancer that's alienating, not the fact that I talk about it. It does seem like people talk to me and interact with me more now than when I was in the throes of chemo and I was miserable and looked scary, or if not scary, then at least bald.
While cancer is hard for those who are witnesses to it, I still contend it's infinitely harder for those who actually have it. There is so much to take in, so many decisions to make. Every aspect of it is overwhelming and it is so important to feel that you have information at your disposal. In fact, cancer is one of the more isolating diseases in modern times, due to the huge fear factor associated with it. And yet doctors all tell you right after diagnosis not to read, not to go online, to avoid the Internet.
These people have got to be kidding. On the one hand, I understand the sentiment. I would have never known that triple negative was "bad" if I hadn't looked online, because at Northwestern they focus on stage and grade, not type, when telling you about your chances of recurrence and survival. It might have been better not to know about the rare and aggressive nature of my type of cancer. On the other hand, no one told me much of anything, and I was desperately searching for answers. I have done so many convoluted google searches that I wish I had kept track of them.
I didn't do that, but I can discuss some of the searches that people have done that led them here. I know I've mentioned a few of these before, but I want to spend a little more time on the loaded word "searching" in this week's blog. I'm especially fascinated by the very general searches ("lumpectomy blog," "blog+lumpectomy," "bald woman") that lead folks here.
Why is this interesting? Well, I don't show up in the first 100 hits, or maybe even 500 hits--I didn't check that far. And I only see these search terms in my blog stats if someone actually views a page of my blog through the search. That either means that someone is looking for something very specific and is hell-bent to go through a lot of sites to find it, or it means that someone is spending hours looking through all the sites, poring over the words, trying to understand what she has learned about herself and her new life. Either way, it makes me think about cancer as something that even I experience outside of myself, in this new world, out in the ether. Something that is so personal, so emotionally and physically damaging, is also experienced virtually. I find that interesting.
These searches make me think about the people behind them, and they bring out different emotions in me. There are those that make me feel proud, that make it seem worth writing about something terrible if it helps someone else understand what is in store, at the same time that they anger me because it should be doctors who answer these questions, not cancer survivors:
"can thin small breasted women have a lumpectomy"
"how soon do you wake up after lumpectomy"
"does being thin affect radiation for breast cancer";
There are the image searches, which inevitably lead people to my GI Jane blog (the picture of me in the Meg Ryan wig I never wore more than a handful of times is especially popular in Germany):
"bald women with cancer";
There is the one that makes me want to shake the hand of the person searching:
"what to say to someone who is having lumpectomy surgery";
There's the one that I would like to send to my oncologist as proof that I am indeed not a "spurious result:"
"paclitaxel heart palpitations the next day";
There are searches that make me want to say, in all sincerity, good for you! Until I realize that the woman writing must have been putting these words into google because the result she experienced, however welcome, was still unexpected and confusing:
"after my lumpectomy I felt great and had lots of energy";
There are even some that make me want to contact the person searching and tell her to find a new doctor:
"lumpectomy arm has IV needle";
There's the one that makes me laugh, that tells me that either the person was specifically looking for my blog and forgot the URL, or he or she is my secret soulmate and Gabe had better watch out:
"It's all over but the shoutin' cancer";
There are those that almost make my heart stop as I remember so clearly what it was like to go through these things:
"waiting for BRCA results;"
"felt like such a fake" (that is such a general sentiment that I don't understand how it led to my blog, and yet there is nothing truer than those words when I think about myself wearing a wig);
There is my all time personal favorite:
"How to look amazing in just one week!" (this search led to my "Just one week later" blog after radiation was finished, when I looked like hell with no eyebrows and chicken little hair. I like to tell myself that I can answer this question expertly at any given time, however);
And there is the one that pains me to read, because it cuts to the quick:
"young cancer survivor unable to picture old age."
All of these words have other words underneath them, other meanings. This web searching that we do coincides with all of the soul searching that cancer entails. Can someone please answer the unanswerable questions? Can I get a witness? I wonder sometimes where my searches are, what would happen if I put my most personal questions into the cloud. What if I searched for this: what do you do when your husband is crying because your daughter was asking what she will look like when she is 18 and they discussed whether she would be taller, fatter (her word), have longer or shorter hair, and she said she would have long hair, unless she got cancer and it fell out?
What, if anything, would I find?
What would happen if I did a search for this: I was so proud of this same daughter when she played the lead role of Dorothy in the Wizard of Oz play at her school today, because she remembered all of her lines and wasn't shy at all, and I was proud of myself for finding the dress and the shoes, and I wonder what she will look like, and be like, when she grows up, so I couldn't help but just cry during the show, and not out of happiness but a real, deep, penetrating fear that I will never get to know her as an adult because I will die too young, but 30 seconds later I was laughing and joking with the other parents?
What, if anything would I find?
I don't know. I have finished searching for answers about breast cancer, at least for now. I am glad, however, that this strange rambling vehicle I'm using to express my thoughts has led some others closer to those elusive truths that it would be much better to never learn. In closing, I don't say this often enough--thanks for reading.
Friday, February 18, 2011
This has been a week of change in many ways. A change of pace, a change of scenery, and a change, or several of them, in me. I'm writing this from the north woods of Wisconsin, the only place we ever go on vacation anymore, and a place we haven't been to since the beginning of July. That means that the last time I was here, I had hair--lots of it, and I was a few days away from my first chemo treatment and I was terrified. It was summer, we went swimming, I had a tough time finding a bathing suit that didn't make my left breast ache so soon after my two surgeries, and Augie had just started walking.
Things have changed. It's winter, and even though we had a great thaw (60 degrees in Chicago yesterday, I'm told, though we missed it) to follow our great snow, word never got out up here that spring had arrived. Yesterday it was as warm as we could have hoped it would be, somewhere in the mid-forties. We got up here in record time--less than 6.5 hours, after stopping to eat and stopping for bathroom/diaper breaks--because Gabe thought we would be able to see the arora borealis. It turned out that the original predictions were off by a day, so they were visible last night instead of Wednesday night. It was so foggy yesterday that I could hardly see as I walked down the road that would have been pure mud if it wasn't pure ice. But then the fog cleared, and we kept looking for the lights, but the moon was so big and so bright that we couldn't see anything else.
I love the darkness here, and the stillness. I love how there is nothing to do, and everything is far away. No one is up here in February, so my walks become entirely different than they are at home. It's just me, and I don't run into anyone, or see any cars, or need to stop at traffic lights. There is no sound, except ice cracking on the lake if you get close enough. Tonight we parked the car right on Lake Lucerne so we could watch the moon rise over the water. It was the largest, brightest moon I have ever seen. It was so magnificent that young boys left the bar and walked out onto the pier to watch it too. Augie shouted "moon!" on the long drive home and Lenny said she liked when the moon went behind the trees because it looked like the tree branches were drawn on the moon itself.
So it's winter, and that is different. And I don't have much hair. Augie runs around like a madman, and he has just learned how to jump with both feet. The memory of him teetering around gingerly is as far away as the memory of me as a young mother with her whole life ahead of her, unafraid of the future. Lenny reads silently to herself in the car, until she pauses when we discuss going to our favorite restaurant on Lake Lucerne and she asks, "was the last time we were there before we knew you had cancer?" Oh my child. Don't let me forget that you haven't forgotten. What is there to say? Yes, you stayed home with Grandma when we went last summer so the last time you were here was before we knew I had cancer. OK, right, she said. These conversations are different than what I imagined discussing with my not-quite 5 year old. Moreover, my cancer treatment is, hopefully, or at least for now, behind me, rather than looming ahead of me. I have lost the things I was going to lose due to chemo, except for the fear of losing them again.
Because things have changed. After my breast felt like it caught fire 10 days ago, I started to notice that things were different in me. I didn't want to say anything aloud because I didn't want to jinx it, but my hot flashes started to diminish in quantity very rapidly. Then a day went by when I didn't have any at all. It happened just like that. Other things have started to return to normal as well. I feel my old sexuality coming back. All of a sudden, after being afraid I would be stuck in some kind of damaged body forever, I am almost at the same level of sexual function and desire as I was before chemo. I am not exactly like I was, but almost.
How did this happen, in the blink of an eye? I was desperate with hot flashes, depressed about my sex life, hating my hair, and now...things are coming back together. This is where you realize what a big gap there is between normal and almost normal, however. Nothing is as it was. And yet it's close enough that I just can't imagine having to go back and lose it all again, or worse, find out that my back pain really is something else and enter into a new abyss of advanced cancer treatment. I remember writing about the Flowers for Algernon effect when I was doing chemo. I feel like that now. I can feel myself coming back, my body coming back, and I think, how dare you try to take that away from me!
That's what I am thinking about now, how things are all of a sudden almost normal, which shows that they are not really normal at all. When things are normal, you don't think about them. You just live your life. I hate thinking that consciousness, that deliberate thought, is a sign of difference, and yet it seems to me that it is.
I had an experience last weekend that brought all of this home for me, and part of me wants to write about it, and another part of me knows that I will not be able to express what I want to say well enough and the whole thing will sound ridiculous. I will give the short version, and see what I can make of it. The gist is that while out on a girls night, a very drunk guy was flirting with all of us, and seemed interested in me in particular. He gave me his number, tried to take me away from the table, told me how pretty I was, what I great smile and a nice face I had, and all of that. I am not a fan of being hit on in bars, but the way this whole thing happened and the bizarre things he said to every one of us was entertaining. He told one of my friends later that he really wanted to talk to me, so I decided to talk to him right before we left. He asked, where do you want to go? Right here, by the door. Are you sure? I won't hurt you or anything, do you want to go somewhere else? No. OK. So he took my hands and looked at me and said, I know about your illness. I understand. My dad is going through this right now with non-Hodgkins lymphoma.
He said a lot of things. How he could look into my eyes and see my struggle and that's how he knew. That I was so beautiful, and he took my hair in his hands and said, and I love this. That I was a fighter, that it was something you really had to power through and you had to be strong, that his dad had been a fireman for 30 years and this is the hardest thing he had ever done and people don't understand.
Since I am writing it, I must remember it. But after he said the word "illness," it was like he was talking to me through a cloud. Here I thought I looked normal enough to "pass," that a guy might actually see me and think "she looks pretty good, " not, she looks pretty good...for a bald lady, for someone with cancer, for a sick person. But no, he needed to talk to me about cancer and bare his soul to me in that drunken way when people tell you personal things they would never tell you if they were sober. My friends were standing an arm's length away and didn't hear the conversation through the din, and I thought of keeping it to myself. I told them though, and I told Gabe the whole story when I got home. He said one thing that made me feel better. Something along the lines of, well, either way, whatever his intentions, he noticed you. People notice you and take an interest in you. There are worse things.
I wanted to run away from myself right then in that bar, from this cancer girl that I have apparently become. I have decided to tell myself that there were two things happening there--he was attracted to me in the first place, and then he figured out I had cancer. I want to believe that it wasn't obvious right from the beginning, that there is no red C on my forehead marking me for life. This might sound funny coming from me, the girl who walked around bald as a cue ball for five months, who never bothered to wear wigs and who only drew on eyebrows for a particularly bad two week stretch sometime in December. I never tried to hide cancer, or chemo. If people ask me about it I tell them. When we have a sub at the gym who doesn't know my limitations I tell them I can't do certain things with my arm or my chest. The male sub has never asked, but one of the women did, and I said breast cancer, and she looked at me with that look and didn't say a word. But after hearing that word Illness I felt so unlike myself that I didn't say hardly anything. I just let him talk at me, and I wanted to say, what if you had been wrong? And then I wanted to say, one of the only things about my appearance that hasn't changed from this is my eyes, and if you see struggle there, it was there before cancer. In the end I didn't say much though, and I acted like someone else.
I am that woman, and I was always that girl, who doesn't trust strangers, and I never let them near me. I have never in my life given my number to a stranger, except once when I was 14 years old and the 16-year old usher at a movie theater asked for it. And of course I didn't give this guy my number, but I let him touch me, touch my face and my hair and kiss my forehead. That is not me. I've been known to smack my own husband if I don't want to be messed with right then. I was just kind of lost in the absurdity, all over again, so I stood there. I've never had an experience where I received so many compliments--some that were normal, the kind that men give women when they are attracted to them, some that were much deeper--and felt so sad about it afterwards.
I guess that story isn't so short. I might regret putting that out into the ether, because I feel like I'm admitting to being some kind of freak at the same time that I sound vain and petty, but then again, I have always contended that I would keep it real here in cyberspace, so there it is. Every time I think I am going to have a normal experience, there is something there that says, not so fast. You have CANCER, remember? And it makes me tired. That is what scares me about getting things back--my hair, my sexual mojo, my ability to sleep without hot flashes. Even the things that are normal are reminders, because you just cross your fingers hoping you get to keep them for just a little while at least. I wrote once that I live my life constantly feeling like I am driving the getaway car. I am waiting for my real life to catch me, so I have to love these moments of relative health and normalcy while I can.
Sometimes when I am being hopeful I think about growing old. Specifically, I think about how much I always thought I would like being old. I will never, ever, believe that cancer or any of the other trials in my life happened for a "Reason," and yet sometimes I do believe that I should get to be old, just because I might be prepared for it. It's as if my body wanted to tell me what it would be like: Someday, you might not be able to walk, or go to the bathroom by yourself, or turn your own body on your bed. This is what that feels like. Someday, your brain might misfire, and the electric wires will get crossed, and the wrong things will happen. This is what that feels like. Someday you will have so many hot flashes that you can't sleep for more than an hour a night. This is what that feels like. Someday your hair will thin and fall out. This is what that feels like. Someday, sex will be something that other people think about, that other people can do easily. This is what that feels like. Someday strange men will compliment you for your strength of character and you will be able to let them touch you because you are so far removed from the normal sphere of attraction. This is what that feels like. Someday, you will have a terminal disease, or an illness serious enough that death is right there in the middle distance. This is what that feels like.
And how exactly does it feel? Somehow it is not all bad, but it is sobering. Older people are so aware of their bodies and what they can and can't do anymore. Perhaps I have been given all these glimpses into old age because my body knew it would never have a chance to get there. Perhaps I will get there. I would like to--I would like to put some of this knowledge to use. I would also like to play a lot of solitaire, and wear mis-matching clothes, and give men compliments the same way I give women compliments without worrying about it, and I would like to call my kids and grandkids who haven't talked to me in a while, and shout at my husband who can't hear me anymore, and go to water aerobics and smile at the young girl who just lost her hair to cancer treatment and showed up at the pool anyway, smile and ask her about her baby, tell her there is something else afterwards that is almost normal, run as fast as the water's resistance will let my aged body and tell her, yes, I know what that feels like.
Thursday, February 10, 2011
It's been 280 days since my diagnosis, and exactly two months since my treatment ended. Cancer feels so new at the same time that it feels like something I have always had. In some ways I'm still in the middle of everything, as cancer is one of those gifts that keeps on giving. I've been having a tough time lately, though I know that's not what I am supposed to say right now. What makes it even harder is that sometimes I feel so normal that the reminder of everything that cancer means just causes an almost palpable ache.
I will admit, though it's hard for me to do so, that I have been an emotional wreck over the last week. Some of it might be hormones, but much of it is fear--waiting for that first mammogram which I was supposed to do two weeks from today, worrying about my hips and my back, which has been hurting in one specific location in my spine for days. I know that there are people reading who are thinking, just get the damn bone scan already! Yet every time I am convinced I have cancer in my spine, the pain goes away, or a doctor tells me not to worry, and then I don't know what the hell to do. The scans are nerve wracking and they're a lot of radiation in and of themselves, so you don't do them lightly. I still haven't had sufficient reason to schedule one, and I will admit that the very thought terrifies me. I just can't handle the thought of metastatic cancer.
The rest of my mood is just sadness, and tiredness, especially related to menopause. The hot flashes are much better, though they're still there. I'm down to using the estrogen cream twice a week, but even on off days the flashes are manageable. It's the changes in my sex life--or not even my sex life itself but the way that I experience it--that I am just not going to get used to anytime soon. Things have gotten better, but I feel like such a different person, an older person. It's hard to relate to people my age about this, in part because many people just look at me like I'm nuts because we do have such an active sex life for parents of two little kids, and other women have always had these problems, or never had much libido, or whatever. The other day I was feeling so down about this that I momentarily decided that I should just give up on having sex for the rest of my life, since it often makes me sad and reminds me what a toll cancer treatment has taken on my body and my sense of self. Then I thought, but that's not fair to Gabe, so he should find someone else, at least for the sex part.
These thoughts are not rational, and they don't stem out of anything tangible in our lives, as we have been working through all these changes pretty damn well. I know that. Gabe was not pleased to hear me voice these thoughts. We got in a big fight, the kind that couples get into that you instantly regret because you wonder if there's any going back. I ended up admitting to things that are hard for me to admit. I feel unattractive, regardless of what Gabe says. I interpret his life-induced tiredness as lack of interest in me because I am now a strange-looking cancer patient rather than a sexy young wife. Worse, I just feel "less." Less like me, less like a woman, less like the person he promised himself to years ago. Gabe had to admit that sometimes he does feel differently about me, because he worries about losing me and he never did that before cancer. But he still loves me so much, and he thinks I look even prettier now because now he can see my ears, and I am still sexy, and I will live to be old, and all of that. And yet.
We are sometimes walking an emotional tightrope around here, afraid to fall, afraid to look up, afraid to do anything but just look straight ahead and assume we will get to the end in one piece. It's hard on a marriage. On the other hand, it's hard on a marriage to have little kids, especially when you both work full-time. That's enough. This is just that much more. I so want to relate to my girlfriends about the normal stuff. And I can--I can bitch about work and my husband and the "balance" and all that but then in the middle of the conversation I just blank out and think about, well, dying, and then I feel very alienated because clearly something is wrong with me.
I hate when my mind goes all morbid like that. For example, Augie has become obsessed with babies. He loves them, loves pictures of them, and is using his new-found verbal skills to talk about them all the time: Baby! Bottle? We ask him, who's a baby, and he says Me! (This is one of my favorite verbal development stages--when they figure out who "I" or "me" is. What an amazing concept--you can see the recognition in their eyes and it reminds you that we are all an abstraction, all some kind of dream waiting to be spoken). So we indulge him. But then cancer strikes. Gabe was showing him a documentary about babies and mothers around the world. I would normally not even pay attention to something like that, but this time I couldn't stand it. Watching all these glowing pregnant women, happy nursing women, seeing all the newborns. My body doesn't even work well enough to get pregnant, even if I had permission, even if I could ever nurse again. It reminded me of what I had lost and I just started crying and had to tell him to turn it off. Then my son cried "Babies!" and I felt guilty on top of it all.
Cancer brings you to these dark places sometimes, and it's not always for the reasons that you imagined when you were just desperate to get through the treatment. Feeling old is hard when you're 35--there it is, I said it. Maybe that's not a strong, brave, inspirational thing to say, but for me, it's true. I know it could be worse. I know I could be dead. I know that I'm not actually old. But I feel like my body has aged 20 years in less than one year, and that feeling is made tougher by the fact that my short hair apparently makes me look younger. I keep getting carded or hearing people gasp with shock when they find out I'm 35. It reminds me of the compliments I got when I was bald and how those made me feel: Thanks! and Ugh! If only you knew. I used to believe compliments at one time, and I could respond to them graciously. These days I just feel like someone is making a joke, or worse, it makes me think about death again.
I look so young, I am so young, right? How could I be so close to death? Is that really waiting for me? I hate that aspect of cancer. With something like an accident, you realize that you've lived through it, and you can move on. Now there's just some cancer demon lurking, waiting, messing with you, maybe inside you right now and you don't even know it and you won't ever know it until it's too late. So someone says, your hair is really growing back, it looks great! And you're thinking, hair is just dead stuff, but you say thanks, and talk about getting your first haircut someday again just like you're a child.
I wrested myself out of the darkness eventually and I have felt better, though the cabin fever has been compounding the issue. When we left the house today it was -7 degrees. I took a walk through the tundra yesterday for the first time in days. I made it a few miles to the glasses place, where I picked out some kids frames for my tiny face. First, my face had to actually defrost, and then I could focus on the specs. I've decided that with short hair, I just need to focus on style a bit more. When these glasses come in I'll have Gabe take some pics and you can let me know if they look decent. In the meantime, I am dying to go for another walk. The last walk I took before yesterday was on Sunday, and I was crying the whole time because last weekend I was in the middle of the darkness. So my face froze then too. I need a good long walk without icicles or near-frostbite going on, you know?
Because it's tough to go outside, I've been working out more indoors. I've gone to pilates twice this week, the gym at work three times, and rowing once. No water aerobics this week as they're closed. None of this is out of the ordinary for me, and yet I'm thinking about it now and wondering if I did something to hurt myself. All of a sudden on Tuesday night, I had one of the most stressful things happen in this whole cancer experience since I found the first lump, and I am still searching for an explanation. I would almost be happy to blame myself, if it meant I understood what was happening.
My breast was suddenly extremely painful, swollen, and hard. It was red in places. The entire breast felt like a tire. I have a lot of scar tissue on the side, where I had two surgeries in less than three weeks, and that makes it next to impossible to feel lumps in that area. That makes me nervous but I've gotten used to it. This was the ENTIRE BREAST, with huge, golfball-sized lumps inside. The pain was unbearable. I tried aspirin, hot water bottles, massage. I asked Gabe what he thought. He definitely didn't think it looked or felt normal. I left panicked messages for my surgeon and did a million fruitless searches online.
I have had pain in the surgery area for about a month. It has never quite gone away in the past eight months, probably because the amount of scar tissue from both surgeries is pretty significant given the size of the surgery area. Radiation made the pain worse, and I was told this is normal. (I hate it when doctors tell you it's normal. Common, maybe, but none of this is NORMAL). I feel twinges or tightness in my arm sometimes when I work out or carry groceries or lift Augie. But I have never felt something like this. It scared the shit out of me.
I got a call Wednesday morning letting me know I could see the P.A. that day or the surgeon herself today. I took that as a bad sign, actually, so I decided to wait a day and see the surgeon in person. I'm sorry, but a P.A. just doesn't cut it in this situation. Why was I upset about learning I could see the doctor right away? You have to understand that these people are booked for months in advance, especially my surgeon and my oncologist who are the head honchos and leaders of their fields at Northwestern. You're telling me I can see her tomorrow? Good god, am I dying today? Then her nurse called me back later, saying not to worry, but I could come in Friday to see the P.A. She sounded almost annoyed that I had an appointment with the surgeon because she "has a lot of appointments and is going on vacation soon." I guess there is some lack of communication at the hospital and she didn't know I was put on the schedule. I was very nervous, which always makes me feel frustrated with people, and I wanted to say "Well I'm sorry that my CANCER puts a crimp in the schedule! What is vacation like again? I don't really remember!"
I didn't say that, obviously. I tried to be productive at work, I tried to think about other things. Then I went in and saw one of the P.A.s, who literally seemed stumped by what I was saying. My breast is much better than it was on Tuesday night, though it still hurts and is red in places. Unfortunately I couldn't have them feel what it felt like that night. We should have taken a picture. The swelling is down and it is mostly lumpy and hard near the surgery site, rather than all over. The part that hurts is actually away from the site a bit, which is what led her to say "I'm puzzled. I'm going to get the doctor."
This is not a way to make someone feel relieved. The doctor came in, did another intense breast exam and said, "well, that doesn't feel like cancer to me. I don't feel anything that makes me concerned but of course we don't know without imaging." Thinking about the fact that three doctors weren't concerned about what turned out to be three cancerous tumors, I asked a million questions. Could it have been fluid? Maybe. Could it be related to exercise? It's possible. Can this be caused by radiation? Yes, there is even something called radiation recall, where if you get really hot (were you in the sun recently? what sun? I don't go on vacation, remember? all I can hope for is a few days away from cancer and I haven't even had that yet) the area that was radiated can have an extreme reaction. Oh, is that what this was? I don't know.
I just didn't feel reassured at all. Then I got what seemed to be some strange advice. I was supposed to go in for a mammogram in two weeks, and I have been psyching myself up for that. I won't even attempt to explain what it's like to think about these follow-ups because it is impossible to understand unless you've been there. But the surgeon wanted me to cancel that mammogram, which was just for the left side, and reschedule for late April or early May for a bilateral mammogram. Huh? I have some insane issue and you want me to wait two more months to get it checked? She said I could still do the first scan in two weeks if I really wanted to, but then I would be off schedule forever for getting scans.
This left me a little speechless. If I wasn't supposed to have this one, why was I scheduled for it? Do you think I know what the hell I'm doing? I've never had cancer before--maybe you could tell me what the right schedule is! Moreover, this is not a general physical. This is a very emotional, physically uncomfortable and for someone with scar tissue and radiation issues, a painful procedure. On the one hand, I sure as hell don't want to go through more than I have to, if only to avoid the extra radiation. On the other, you're telling me to wait almost three months to find out if I have cancer? What if my breast goes nuts again? I can't feel anything under the scar tissue--there could be a 5 cm tumor in there for all I know. The only thing that distracts me from that thought is the very specific pain in that spot in my spine. Neither is ideal.
So there it is. What to do? Wait, or not? I decided to cancel the earlier mammogram and wait. I might regret it, but that was the doctor's recommendation, so I'm assuming if anything was dire she wouldn't have put it off until then. It just makes me so tired--I thought I was past the point in my treatment where I needed to make a bunch of decisions. I thought I was entering into the "new normal," but normal still seems pretty damn far off in the distance. I thought I was somewhere near "done."
And while I'm not near done with cancer, I am near done with this blog for the night. I always read these back to myself before I publish them, and after reading this now, I have two thoughts. One, it does make me feel better to get some of these thoughts out there. It makes it somehow less cryptic in my own mind, even if it seems crazy cryptic to those reading. It also makes me feel a little satisfied with myself for admitting to some of the really difficult aspects of living with a cancer diagnosis, because so much of what is out there about cancer and treatment for cancer focuses on the hope/inspiration/shut up you're lucky to be alive/it's too difficult to hear about that stuff.
The second thought is about facebook. Where the hell did that come from, you ask? Well, I have said before that I think that this blog can alienate me from people in the real world, because I come across as morbid or depressed or something when in real-life encounters I am almost alarmingly normal for the most part, at times even funny, and entirely capable of talking about everyday, and yes, banal, things. This blog is a gift for me but a cross as well, as people rely less on face to face interaction with me because they "know" about me through this medium. Of course, all they know is how I feel about cancer at the time I'm writing the blog, and that is a very limited scope. There's not a damn thing in here about anything else about me because I am writing this to get through cancer, and as selfish and short-sighted as that is, that's all this blog will ever be--just that piece of me. And yet I've heard many people say "well, I don't need to call you...I read the blog."
Isn't that what social media has done? Made us believe we are connected by cutting us off from each other in real life? Some people think that, though I am not so sure. I think it's amazing how something like Facebook has enabled me to link to something like this google-based blog, which puts me in touch with not only people, but a part of myself I would have abandoned--the creative writing part--if some tech geeks hadn't made it easy for me to use. What a world!
This is a much longer essay, I realize. It's on my mind because we finally watched The Social Network on netflix last night, and besides finding everyone pretty damn rich and entitled before the company even took off (what 19 year olds have family lawyers, or $18k of their own money?) I was left with mixed feelings. Even if the whole movie representation is a crock, I still can see both sides. It would suck to get screwed out of all that money. On the other hand, just having an idea that you have no clue how to turn into anything real is not that impressive. If I could become a billionairre off of ideas alone, that would have happened a long time ago. Someone has to actually figure out how to do the things I think about, and maybe they deserve to be rich if they can do that.
Regardless of what side you take, that movie would make anyone hate Facebook, and America, and even crew teams. I think I must be coming out of my recent depression because instead of hating anything, it made me think, hey, that rowing does look awesome, I hope I get to go on the river soon! And, hey Mark Zuckerburg, did you ever think your idea for voting on hot coeds would be used by a bald, tattooed cancer patient to tell her friends and family about her menopause and swollen tire of a breast? I bet you didn't. But hey, that's America, right? We do many things well, and I do believe we specialize in the absurd. I'll end on that thought, though D. H. Lawrence said it much better than me:
“Reason is a supple nymph, and slippery as a fish by nature. She had as leave give her kiss to an absurdity any day, as to syllogistic truth. The absurdity may turn out truer.”
Friday, February 4, 2011
It would be hard to sit down right now and write something that is not about snow, as I'm a Chigagoan. We had the kind of blizzard the other day that happens rarely in a lifetime. It's the third 18 inch+ in 24-hours snow of my 35 years. The first was in 1979 when I was four years old. Though many people don't believe me, I remember walking to preschool--that's right, preschool was open--with my grandma, and I remember how the snow seemed almost taller than her and the drifts were definitely taller than me. It's possible that the preschool was snowed out for a day and I remember walking the next day, but that seems less interesting, and in truth, we all lived close enough to school that there was probably little reason to close since we could walk.
The next big snow was in 1999, 20 years later (so I missed out on snow days for my entire childhood--lots of big snows but none big enough to warrant school closing). My best memories of that snow also verge on the absurd. My boyfriend decided to try to get home from my apartment--I think mostly because he wanted to see if it was possible, not because he had somewhere to be--and he got the last train going downtown. At around noon. The CTA just gave up after that. I also remember dealing with the residents of my apartment building. I was 24 years old and worked full time, but as a second job I managed a 30-unit building for reduced rent. Boy, could I write a book about that. Anyway, folks were calling me, asking why we weren't shoveling during the blizzard (in 60 MPH wind) and complaining that they were snowed in, trapped. One guy was so insistent on this last point that I had to remind him: "our lobby doors open to the inside. You can get out." I wanted to say, can you just relax and realize that wherever you think you need to go, it isn't open anyway?
I could say that it's cancer that made me slow down this time and not panic about getting places, but in truth I've always figured that in a tempermental climate, weather sometimes just trumps. Sometimes life stops or is different for a span of time, and I didn't need cancer to teach me that, just the midwestern seasons.
This time, during the great blizzard of '11, I got home from work before all hell broke loose. Gabe didn't believe the forecasts, and I blame that on him spending too much time in California. I left work on Tuesday at 12:30, when there was not much snow on the ground but there was already crazy wind. Lenny almost blew over in the parking lot of her school. I got both kids inside safe and warm, and within two hours you couldn't see out of our windows. No matter, I sent Gabe to the store to buy some milk anyway since he was getting home in the middle of it. Through the drama that ensued over the next few days, we only lost our power for about 10 minutes, so it was actually relatively enjoyable for us. The storm was amazing to watch. We really did have "thundersnow." There was lightning, and huge thunder bursts, and the snow was moving so fast that it was horizontal, laying like sheet cake on our window screens. We would have lost every single item in our backyard to the wind if there hadn't been enough snow to keep them buried. Schools--that's right, Chicago schools--were closed for 2 days.
I have felt a crazy amount of cabin fever, having worked from home for the past two days with the kids here. I've been incredibly busy with work, and very frustrated for a variety of reasons as well. Cancer is not the kind of thing that was intended for young, working-age parents. But that's a different blog for a different day. I finally got out of the house last night by driving to water aerobics. Today it's almost 30 degrees, so I went for a long walk (I took the kids to school/daycare so they wouldn't lose their minds). I figured I should enjoy this now before the temperature plummets again next week and we sit in 5 degree highs for days on end.
This was a long introduction to the following statement: February is my least favorite month of the year. It's the shortest, but damn is it also the longest. When I was on modified bed rest for the whole month of February before Lenny was born, I just looked out the window from my bed, with my laptop on my huge belly so I could work from home, and thought about dread. And no, I don't mean I thought about things with dread. I thought about dread itself, because that's what February is like. You think you can see your way out of the cold, but it's dark and dreary and the snow turns black and your boots are worn down and your shovel is broken and the month just keeps going for what seems like forever.
So perhaps that's an explanation for my state of mind, to some extent. I am definitely feeling that post-treatment malaise, that indescribable worry. My back is hurting and I try not to think about it. I made the mistake of looking into the searches that bring people to this blog again (I love "my hair short" and "I want to look like GI Jane" and "can thin women with small breasts have a lumpectomy"). One of them was about triple negative breast cancer and liver metastasis. I was the fifth hit on that one, because of a blog where I talk about the fear of metastatic disease due to the aggressive nature of triple negative tumors. I poked around in the other top four hits and was sent to a site where a woman who was stage 1, triple negative, found out 2 years and 10 months later--after chemo and radiation--that her cancer had bypassed the breasts and gone to the liver and lungs.
This is my absolute worst nightmare, and obviously hers as well. So close to that three year mark! Stage one! Clear nodes! No matter. When people tell me these things will not happen to me, I just smile and nod. Of course not. Everything bad that happens always happens to someone else until you realize that you are someone else to everyone else but you.
Sometimes I think that having three tumors should be a problem for sure, especially since whenever I tell another breast cancer survivor that, she looks at me with wide eyes and says "three? wow." And I know she's thinking honey, you're doomed. But no one ever says that, because how could you? It's tough. I've had several dreams about my upcoming mammogram. The reality is that the BEST place for my cancer to spread would be to my breasts. It's the other stuff that would mark the end for me.
When I'm in the house too long and I feel isolated, or I'm not able to exercise enough to not think at all, that's where my mind goes at times. People talk about this being the toughest time of my life and say I will get over these feelings. I'm sure that's true to a certain extent, but it makes me wonder: is life ever really that easy? We want it to be, we need it to be, we even change our memories to accommodate that desire. But that doesn't make it true.
When I was 4, my grandmother walked me through the snowdrifts. Why? Because my mother had died due to internal hemorrhaging on the operating table after a hysterectomy a few weeks or months before, at age 29. She was resuscitated, they induced a coma, and after a long recovery, she is still with us today. But for weeks she was in the hospital, and I didn't understand. And for months she was in bed fighting to live. So my grandma came to live with us to help out, and that's why she walked me through the snow. Life is never easy.
When I was going through chemo and feeling guilty about how it affected my kids, my mom had an interesting perspective. She said she never felt guilty about missing out on things when she was bed-ridden because she knew she had to get better to take care of us later. No one worried that we would be traumatized or scarred for life. Was I confused, angry, scared, and all of that? Sure, but you know what, I also got over it. I don't believe I had any long-term consequences of that time from an emotional or psychological standpoint. I hope the same is true for my kids.
I think the worst part for Lenny was seeing me bald and knowing how I would feel after chemo. I don't think she ever thought I would die, she just didn't understand why things had to change so much. In the end, it probably helped her with math. 33 days of radiation, I just did my 25th...my four year old looks at me and says, 8 days left mom!
For Augie, being forcibly weaned was arguably the worst part. I never really wrote about what that was like in the blog, though I wrote about it happening. The experience was just too painful to describe back then. My daughter never nursed well but Augie and I had a great thing going there. He was excited and kicky all the time (it's possible that cancer lowered my milk supply and he got frustrated) but extremely efficient and happy at the breast. He had been in daycare for several months by the time I was diagnosed, and he was used to the idea that sometimes we went out at night and he got a bottle from a babysitter. But I still nursed about 5 times a day, and I think only once in his short life did he get a bottle first thing in the morning, when Gabe and I stayed somewhere overnight. Those mornings in early May after I was diagnosed, I refused to feed him the bottle. I just couldn't do it. It was the look he gave me that I couldn't stand. He wasn't angry, or sad, he was just confused. Mom, why aren't you coming in here? Why is dad here?
Because I have cancer, I would silently tell him. And that thing we did five times a day for months? Neither you nor I will ever do it again. It was impossible to be in denial about it in that situation, and I cry when thinking about it even now.
Sometimes I wonder if these weepy times of mine are hormonal, though I think they are definitely normal even if they are not. I've had that monthly glimmer of libido again, though my cycles seem pretty hell-bent on disappearing from my life. It's been five months since my last period and I'm starting to think that Gabe should forgo the vasectomy for sure. What's the point? I still have hot flashes and I still feel like a different person. I look like one too. Who is that woman with the short, dark auburn hair? Yes, I recognize that my hair is red, albeit dark, but there's so little of it that it's hard to tell. I recognize that it's no longer curly. I recognize that I'm smaller. Even when these statements come in the form of compliments, it's hard to know what to say. Yes, I know I'm different. I know there's no going back. What can I do? Rock the earrings, I guess.
It seems that Day 274 is another day for non-sequiturs in this blog. Again, what can I do? Sometimes that's how my mind works: I go from snow, to childhood, to metastatic cancer, to public transportation to womanhood and back again. On some level in some universe I do believe these things are related. Or maybe it's just because I live here, in this strange city.
To complete the random nature of this post, why not throw in another poem? I think I wrote this after the last big blizzard, but it's just as likely that I wrote it after a major heat wave. Either way, it's been about ten years. It doesn't seem worth trying to write something new, because for whatever reason I haven't changed my mind in this past decade. I'll leave you with that phrase Chicagoans always use: "Stay warm."
Really you could live anywhere
occupy space haphazardly,
become worldly and acclimate
to different weathers,
fit your bones
to a more ancient wisdom,
be fluent in a cacophony of languages,
buy clothes for only one season,
see so much farther across horizons
that always remain,
or learn a new physics
through intricate knowledge
and you wouldn't have to brace yourself
and invent new hairstyles
when the cold or the heat
in their extremes
came rallying through,
you could be so much closer
of land or darkness,
and there are things
in the world
you could know about
that would amaze you,
and you could write, then,
about having been
a part of them,
you could learn to
and be made better for it,
you could then remake
and choose, and choose
and always move on into
an infinite possibility
you could remember
how things were there,
you could become
it would take years
to get the stories out.
You could, but you choose
to live here because
the love in your blood