When I was first diagnosed with breast cancer, my ob/gyn told me that someday, 10 years from now, I would receive a phone call from a friend. That friend would tell me that she just learned she had breast cancer, and would be in desperate need of my advice and supposed wisdom. He was trying to tell me that I would still be alive in 10 years, trying to reassure me that someday, this would all be, you know…anecdotal. The day of diagnosis, one of my close friends told me that this would be a story that I would tell someday, like all of my other stories. He said that like so many other things, cancer would be just one more experience that made me who I am, and that I would be able to tell others what it was like to go through it.
That was two years ago, almost to the day. Not ten. And I didn’t get a phone call.
I got an email.
Wow. That’s the first thing I thought. Then, Damn. Then, what bullshit. What is it? Is there something in the water? How many 35 year old women are going to be struck by this goddamn disease?
I told her I would do anything she needed, and that she could tell me what that was. Did she want to go get drunk? Talk on the phone? Text? Just get doctor referrals? Whatever, I’m game. Before a week ago, we didn’t know each other that well. I think that’s going to change.
Sometimes women ease into friendships, testing the water, figuring out what we have in common before we get into the deep subjects and conversations that make us aware of our bond as women. Sometimes, women like me find each other and we just watch sports and talk shit and have a beer. Sometimes we go bowling or go to the movies or go out to lunch or get pedicures together.
And sometimes we skip all of that, and go straight to this:
“Would you show me your scars?”
I’ll do you one better, in fact. I’ll just take my shirt and bra off and show you my breasts. And you will look closely at them, marveling at how symmetrical they are, how small the scars are, how faint the permanent sunburn is. You won’t even notice the fuzzy blue tattoos until I point them out. And then you will say:
“You have really beautiful nipples.”
And then, the conversation is really up for grabs. What is there to hide at that point? Marital problems after diagnosis? On the table. Momentary hatred of friends and family because they keep calling you and you don’t want to talk and they’re scaring the shit out of you when they think they’re helping? Lay it on me. An almost desperate desire to know what it is like to be bald? A million questions about chemo? Advice about what to include in your will? I’m listening. Your six year old thinks you’re going to die and you want him to talk to my daughter? Sounds like a play date.
And the thing is, I have no idea if I’m good at this. Do I talk too much about what it is really like? Do I use the word bullshit too liberally? Is it wrong of me to talk about my experience with cancer in the present tense, rather than the past, to acknowledge that even when it's over it ain't really over? Do you really, I mean REALLY, want to see pictures of me when I was bald and had no eyebrows and was covered in sharpie right after getting my radiation map drawn?
Did you really just remark about that picture: “oh that’s nice lighting. And you look really pretty, really natural. I suppose if that’s as bad as it gets, that’s really not so bad.”
It’s strangely, bizarrely, refreshing to me to have met someone who has an attitude about breast cancer that is so similar to mine. No interest in the fight or kicking ass. No cheerleading. No denial. No patience for doctors’ crap.
No clue what it will be like, but the acceptance that it will be bad, and people will try to tell you otherwise.
I see this woman answering the phone, telling someone (the 100th person I’m sure) for the first time, holding back tears, and by the end of the conversation saying something to bring it back to normal, to make the person on the other end feel better, to comfort her.
And I remember why I screened calls for three weeks.
I see her and her husband struggling to deal with this shock to their marriage.
And I remember having to tell Gabe that while he was the crier in the family, he was not allowed to cry around me. Not about this. I was not his therapist, not about my own cancer and its effects on him.
I listen to her tell me what it was like to call her mom, and how her mom reacted.
And I remember the sound of my mom’s voice when I called her from the mammogram room, telling her they wanted to do a core needle biopsy.
I hear her frustration over how she is suddenly expected to be a breast cancer expert who knows what to do, in spite of doctors’ refusal to give her the needed information.
And I remember completely losing my shit and becoming my doctors’ worst nightmare in my early attempts to advocate for myself.
There is so much advice one can give that one never wants to actually give:
“Honey, if you don’t want a port, don’t get one. It’s their job to figure out how to do the IV. Remember, you’ve got ALL DAY to get that chemo done.”
“What did I eat during treatment? Whatever I could. Yeah, we’re supposed to stay skinny afterwards, but during treatment they will ride your ass about eating well. But if you need to survive on pudding or frosted flakes for weeks, just remember to shove some raw spinach in your mouth. That’s called ‘nutrition.’ Just eat to get through it.”
“I have a couple really nice, expensive wigs that I never wore that might look good on you. Want them?”
“People are telling you that you will have to live in a sterile bubble somewhere? Girlfriend please! I went to work, and took public transportation, and picked kids up from germ-infested daycare! You will be able to do most of the things you did before—not everything, but most things.”
“Tell your kids that it’s cancer. Don’t assume they can’t take it. They will be OK if you’re OK. And for the times when you’re not OK, well, they’ll get used to that too. They will learn coping mechanisms that other kids won’t have, and they won’t know any different.”
“Chemo will almost certainly put you into menopause. And it will suck. I won’t lie.”
“Of course you should mourn your breasts, and what’s happening to them. And no, reconstructed breasts don’t look anything like real breasts. No, there are no nipples. Go to a plastic surgeon who will show you photographs of different options, and you’ll understand what I mean. I haven’t told many people this, but when I was faced with a double mastectomy when everyone assumed I was BRCA positive, I talked with Gabe and decided I wouldn’t have reconstruction at all.”
“I don’t know if you want to hear this, but chemo was absolutely horrible for me. I had side effects my doctors didn’t know were possible. And I’m going to tell you this: I would do it again. If I can do it, you can do it. And yes, you have to do it.”
How I wish I could be the person to say yes! There really is a do-over button! You CAN go home again! But now is the time to make decisions, hard ones, and to be sad, and confused, and most of all, to be scared.
It’s so hard to be scared when you’re not used to the feeling.
There are so many things I’d like to say that I know won’t help. I want to say that it is not your breasts or your hair that make you beautiful. As one dear friend said to me right after my head was shaved, “Katy, it’s you that made that hair pretty in the first place.”
I want to tell her that while beauty is in the eye of the beholder, and that beauty as socially defined to us is overrated, in the end, beauty is beside the damn point.
I want to tell her that yes, people will pity her if they see her bald or wearing a headscarf in the grocery store. But no matter what, no matter who “knows” or “doesn’t know,” YOU know. YOU have to deal with it anyway, so who cares what other people think? That doesn’t change the reality of cancer for you.
I want to say that you will still be afraid when treatment ends, but the fear will be different. Because what you can’t see now, because it hasn’t even begun, is that treatment will end.
I want to say look at me, I’m two years in, and I seem to be doing pretty good, right? But I remember what it was like at the beginning, when I didn’t know anything about what I would face, and I know that won’t help.
I want to say the thing that I know is true about cancer, that no one else but a cancer survivor knows. When other people tell you that “it’s just hair,” they are full of shit, because they don’t have to do what you have to do. But me? I KNOW something about it and I’m going to tell you this:
It’s just hair.
Hair that defined you for over thirty years, perhaps. Hair that made men dream about you or run after you on downtown streets. Hair that made people forget your name. But damn honey, it’s just hair. And with breast cancer, hair is just a stand-in for everything else, a symbol of all of the things that you will go through that other people don’t understand.
I want to repeat what I wrote on the one year anniversary of getting my head shaved 10 months ago, about a picture that Gabe took of me holding my long, beautiful hair, the hair that had been actually attached to my head a year prior:
Maybe that's it, maybe that's what I would have told myself as I gripped the sides of the salon chair and got ready to have my head shaved: in a year you will go into the basement and find a hat box, you will open it up and take out your hair, and your husband will take a picture. The picture will be of you looking into the camera, smiling above the dead matter that had been lying in a box for a year. And you will think, better it than me.
It’s just hair, they’re just breasts, it’s just suffering, it’s only bullshit, it’s the thing you can do and that you have to do. And all of that is jack shit compared to you.
I want to say it, but I know it won’t help. So I’ll say this:
I’m sorry. Call me. Or don’t. And one day, you will get a phone call, you will need to be an ambassador for this disease, and you will do it. Even when you would rather do anything else. When you hug me goodbye, I will say the opposite of that question I often ask people, I will offer up the only true thing I can think to say:
Tuesday, April 24, 2012
One night this winter, as one of the only snowstorms of the season descended upon us, Gabe decided to ride his bike to the dentist's office. A few minutes after he left, I got a call. A desperate-sounding person was asking me to help him up the hill. His chain had broken and he wiped out right in front of our house. I know he was in a lot of pain. His entire side was ripped up, his hip was badly bruised. But. Augie was so sick with what turned out to be bacterial pneumonia that I thought he would choke to death. He was crying, saying, mommy, please help me stop coughing. Then Gabe was lying on the ground in the living room groaning and Lenny was looking around wondering what kind of madhouse she was living in, and I told Gabe, very calmly:
"EITHER STOP GROANING IN FRONT OF THE KIDS AND SCARING THEM OR FIND SOME WAY TO GET YOUR GIMPY ASS UPSTAIRS! UNLESS YOU NEED TO GO TO THE EMERGENCY ROOM, IN WHICH CASE I WILL TAKE BOTH YOU AND AUGIE AT THE SAME TIME!"
Or something to that effect. I sat there dreaming of teenage boys, wondering when one would come along to shovel my enormous driveway so that I could actually get the car out to drive to the hospital. A little while later I saw the fifth grader next door shoveling us out without being asked, and I understood why Lenny was so head over heels in love with him.
So again, there are few things more annoying than the man cold, right?
Except, maybe, the cancer cold.
Cancer survivors seem to fall into two camps with illnesses. There are those who have severely compromised immunity for a long, long time, and they contract every illness around. Then there are people like me, who can honestly say things like: "I don't get sick. I just get cancer."
Seriously. Everyone around me is always sick with something--my kids, my husband, my mom, my friends, my kids' friends, my co-workers. And I NEVER CATCH ANYTHING. Then all of a sudden, I have a day like yesterday. I came home from work and just felt weird. My throat hurt and I had a headache and was dizzy. I felt like I had a fever, though I didn't. I fell asleep on the couch at 7 pm, right after dinner. I woke up around 8:30 and went to my real bed, watched a little tv, fell asleep again, woke up at my normal time and felt ok, went to work, went to the gym, even. As the day wore on, I got that vague feeling of sickness again. Right now, it's hard to talk. My throat is hurting more. I have a slight fever, my glands feel swollen, my head feels like it's swimming and it's hard for me to focus my eyes.
I have a cold, right?
I am hosting a visitor from Canada tomorrow at work so I have to be there all day, but I made an appointment with my general practitioner on Thursday to make sure I don't have strep. There's no way in hell I'm missing the Listen to Your Mother performance on Sunday, May 6, so I have to be healthy. You guys are all crying if you didn't get tickets. It's going to be amazing. Speaking of crying, during our second and final rehearsal on Sunday, there was talk of the need for an intermission after my piece due to the copious amounts of crying it induced. I don't know whether to be proud of that or disturbed, but I guess that means it moved people, right? So anyway, I have to get on antibiotics if that's what's going on here. There is something I have to say, and someone I need to say it to, and that is going to happen no matter what else is going on in the world.
Why am I writing about this, something so pedestrian and uninteresting? Well, because there is no such thing as a cold for me, not yet. You all get colds. I get cancer.
I feel these swollen glands and I think about my lymph nodes. My head feels so strange, not like a normal headache nor a normal bout of congestion, but something in between. I literally feel like I can't see. And I think about brain tumors. My body hurts, but only vaguely, nothing that shouts out that I have a 102 degree fever and therefore my body should hurt like it does with the flu. And I wonder about bone cancer. Then, I wonder if there's some kind of breast cancer metastisis that could lead to all of these symptoms at the same time.
You can tell me I'm paranoid, or ridiculous, or that I'm a hypochondriac. You can tell me to get over myself. But I ask you this: Why wouldn't you expect the worst sometimes, when some of the worst has already happened? I mean, everyone said it was just a clogged milk duct, mastitis at the worst. Oh wait, sorry...it's cancer. No, not one tumor. You've got three. No, not the normal kind that we can treat with maintenance medications. You have something more insidious, rare, and aggressive, something we don't really understand. But wait, I don't feel sick at all, I feel great, I am healthier almost than I've ever been!
I don't get colds. I get cancer.
Yes, I know it's been almost two years. I am more aware of that fact than anyone. In less than two weeks, it will have been two years since diagnosis. Two days after that, I will perform in the Listen to Your Mother Show. Two days after that, I will have a mammogram. Normally, I would be just so nervous and panicked about that test that I would be acting like a crazy woman anyway, but I have been trying SO HARD not to think about it. I have been having pain in my breast and I tell myself it's just because of my cycles, even though the pain is completely different and is more likely related to scar tissue. I am purposely not feeling for lumps. After all, I am going to have about 57 breast exams in just a few weeks, and what's a few weeks? I remember Gabe telling me he had felt my lump when we were making love a few weeks before I felt it, but he didn't say anything because he assumed it was a duct, and since I was nursing, he didn't feel it the same way again. I know he still feels guilty about that. But a few weeks didn't make any damn difference, not really. And I have things to look forward to, damnit! I am so close, this close, THIS CLOSE! to two years! I have to make it, I WILL make it with no evidence of disease, because I have been waiting with bated breath every day of these almost two years to be able to say that. You can't take that away from me! Right? Or maybe I should say, please?
But you know, there are so many before me who thought that who were wrong. So many who did the right thing, and lived the right ways, and were beautiful and strong and feisty and amazing and their damn cancer metasticized anyway. And there is no way to know if you will be one of those people, until you either are...or you aren't. So colds bring these fears out, because people like me rationally know that it could be something else. My mom has a friend who is a doctor who told her, there is no such thing as a simple headache after cancer. And that's the truth.
So that really is more annoying than a man cold. Stupid cancer.
It makes it hard to talk in normal ways sometimes. On the one hand, you get tired of all the people who ask "How ARE you?" like you have just emerged straight out of the grave. What is there to say? I never know. I mean, I realize that when people ask how you are in a normal situation, it's expected that you say fine, or great, or whatever, because everyone knows that the person doesn't really give a shit how you are. That's the point of small talk. But if you've had cancer, people do care, in the sense that when they're asking you how ARE you, they are asking, do you still have cancer? Can I move on to the next subject or do we have to get stuck in cancerland?
And the problem is that the answer is somewhere in between. I AM fine. Most of the time, I AM great. My life is normal...most of the time. But there are aspects of it that are not normal. When someone asks, how ARE you? I want to say: well, right now, and for the next two weeks, I am kind of...terrified. I am living in limbo. I am distracting myself with all kinds of really meaningful, time-consuming things, in part because I need to distract myself. I am worried in a way that I know you don't understand. I am in denial, or maybe it's not denial because maybe I'm really fine, but I am trying so hard to assume that I'm fine that it feels like denial.
Because, you know, I have to have a mammogram, and the first time I ever had one, I found out that I might be dying. So...that's how I am.
But I don't say any of those things, because it doesn't behoove me to be insufferable. Here's an example. I went with the kids to get haircuts last week. (Don't we look cute all cleaned up? And, for that matter, don't you love the picture Lenny took of me? I know now how she sees me! Crooked and crazy!) Now that I've committed to being a short-haired woman, I go every six weeks or so, but the kids hadn't been in 5 months. They went first, and I got them situated reading books (Lenny was actually reading, of course, and Augie just makes up insane stories, talking at the top of his lungs) when it was my turn. My stylist asked how ARE you, and all the thoughts I mentioned above went around and around in my head, along with thoughts of panic and despair over not having sold or rented our other house, issues with our jobs, worrying about what we will do about child care after school when Lenny starts first grade next year, and everything else.
And I said, "Well, I am really in need of a haircut."
What else could I say? After all, I'm not a man. I don't do well burdening others with my shit. I write a blog instead.
So now you understand why I rarely ask anyone How are you? When I'm leaving water aerobics and I see my dear older friend changing for the class after mine, I don't ask her that. When I see another parent getting his child dressed to go home from school, I don't ask him that. When a friend I haven't seen in a long time gets in my car so we can go somewhere, I rarely ask her that.
So what do I ask? Something along the lines of the following theme, a question that usually leads to a not-so-short answer that is often just shy of the truth:
"Are you ready?"
Tuesday, April 17, 2012
Did you hear that? Can I get an Amen for that? YES!
OK sorry. I was just trying to explain why I hadn't written anything in a while. This might be short and sweet, but here goes:
Nine years ago today, I reluctantly went on a blind date. I was the first of my friends to try blind dating, and I say that rather than online dating, because I am actually old enough that my first blind dates involved ads. In the newspaper. The Reader, to be exact. I went out on a limb and responded to an ad, met the guy for lunch, and he was really cute and nice and smart and all that good stuff. We didn't start anything, but it gave me hope. I realized I was terrible at meeting people at bars or places like that, because, well, I don't like it when people hit on me in bars or places like that. I had a lot of male friends but didn't want to date any of them. And I worked full time and was in grad school full time, so I was busy. Blind dating worked well when it worked well: no one ever lied to me, and everyone followed my rules. No one questioned my insistence on meeting in public places in daylight, getting myself home, not giving out my phone number. I dated some great guys and had some serious relationships through this method.
But it got tiring. There was a lot of good dinner. A lot of realizing that there are all kinds of attractive, intelligent, funny people out there in the world you just don't give a shit about, and you don't know why. After one relationship ended kind of badly, I swore off dating and just decided to focus on all the other things I had going on in my life, which was a lot. Except my profile was still online, on salon.com, I believe it was. I had a damn good profile, if I do say so myself. I described myself pretty accurately. Most guys responded to the parts about liking sports or kung fu movies. When I met people in person, their eyes would glaze over when I told them what I did for a living. Most people can give one to two word answers to that question. What do you do? I'm a (insert): teacher. attorney. IT guy. Graphic designer. Salesman.
"Um, I do policy research and advocacy focused on financial services for lower-income populations."
How did I ever have a date in my life, again?
So on I went, and then one day a few weeks after I'd sworn not to date again, I got this one-sentence email via salon:
"So what's it like to work at a think tank?"
And I knew I had to respond to him, even if he was that weird guy I had passed over when I saw his profile posted, because he was dressed in drag and drinking what appeared to be a 40 but was really that girly Frambois beer. Pleather pants? WTF? Then, he agreed to meet me in my neighborhood at my favorite restaurant. He came to the date with strange floppy hair, arriving from another woman's house.
And now it's nine years later.
No, I didn't know it then. There wasn't an instant spark. We liked each other, were attracted to each other, and the conversation was easy. He made it clear that he liked me. He was cheesy. He offered to drive me to my car since it was raining and I let him because he seemed so harmless and then he attacked me. He did some stupid things, like not calling me the day after we slept together the first time. I called him instead, and told him he was an asshole. He was like, whoa, I thought I was supposed to wait! I said, what is your problem? This is not a movie. And he said:
"I wanted to call you as soon as I got back to my car after I left your place!"
You know, all that good stuff that happens when you're 27 and still clueless even though you shouldn't be anymore. Things moved fast. He told me he loved me two months after we met. He moved in with me after 8 months and proposed to me at 10 months. We got married a year and a half after we met, and had Lenny less than 3 years after our first date.
People ask me how I knew he was the One. I didn't, not at first. But I knew this: There was potential. When we were together, I could see it. What? Well, this. Not THIS, exactly, not the way it's all happened, but this:
Two kids who had a pretty rough time of it who grew up and found each other and built some kind of happy, boring life together. All because the guy liked smart girls (he said he had wanted to write me for a long time but was convinced a "girl like me," whatever that means, would never go out with him) and the girl liked guys who realized she was smart. And they both liked Mexican food.
Gabe once told me he knew I was the one "by the end of the guacamole." That's not really true, though. The real story is about six weeks into our relationship, when we went to Baraboo, WI, for his 28th birthday. I liked that he wasn't one of those guys who had a heart attack when I suggested we go away for a weekend together. We went to a B&B and swam, hiked, realized we could drive long distances and get lost together and laugh about it. We sat watching a beautiful sunset over Devil's Lake and it was honestly one of the best I've ever seen, as good as Hawaii. But I'm still me, I still had to geek out and say:
"Isn't it strange to think that while it looks like the sun is going down, it's really us spinning away from it?"
And Gabe said later he knew he would ask me to marry him right then, because I said the kind of nerdy shit he was thinking but was afraid to say out loud.
Nine years after that first date, I'm sorry to say it's been anything but boring. Damn, I wish it had been boring. That's just not in the cards for us. Some of our "excitement" has been his fault all the way, some of it has been mine (though more of it was his, right?), and some of it was just fate's fault. That guy who had a secret redhead fetish turned into the guy who could learn to have a bald fetish. The guy who took it in stride when I used to tell him to get over himself sure had to learn to do that. The guy who didn't want to have kids, but oh wait, would have kids with someone like me (he said that 2 weeks after we met) turned into a really great dad--the kind of dad who takes the kids to Halloween parties without his wife, because she is at pilates class, for instance. The guy who thought I looked perfect when we were 27 said the same thing when I was hugely pregnant, skinny as hell from chemo, and now, when I weigh about 10 pounds less than when we met. The guy who had watched too many bachelor movies and didn't call now hardly calls anyone but me, for better or worse.
So I'm glad I went on that date, no matter how much I wasn't looking forward to it.
And Gabe, you could probably still pull off those pleather pants. Glad I met you, babe. I hope we've got more sets of nine years.
Friday, April 6, 2012
I was very interested to read this article in Reuters today that suggests that you were actually right about things you said to me while I was in the middle of cancer treatment, even though they seemed so wrong at the time. When I was first diagnosed with breast cancer, I was in such a state of shock and ignorance that doctors could have told me that I needed to slice my ear off to cure it and I probably would have believed it--if only for a second, before I got as bitchy as you know I can be and started to argue the point in some kind of crazed voice. Before I met you, I understood that my experience with breast cancer was different from most of the other women I had met who had the disease. I fell into this weird "triple negative" category. I had multiple tumors. I was not only not post-menopausal, I was nursing, for God's sake.
So things would be different for me, I learned. I would not get an MRI, because there would be a "100% chance of false positives" due to the fact that I was lactating. After a bunch of ultrasounds and mammograms, including that sci-fi 3-D ultrasound, I was offered only one test: a chest xray, to see if cancer had metasticized to my lungs. I had no other scans of any kind. Because I was triple negative, presenting at 0% for all hormone receptors, there was no additional testing to classify my tumors. I did do BRCA analysis, because everyone assumed that a young, triple negative breast cancer patient would be BRCA positive. Everyone was wrong. Remember that?
This seemed strange to me. Don't I need to find out if cancer has spread? I asked. I really didn't get any answers. This looks like early stage breast cancer, I was told. Probably stage two. When I had surgery and my lymph nodes came back negative for cancer, I was downgraded to stage one, regardless of the existence of three cancerous tumors. After a second, probably unnecessary, surgery, I met you and started to make my plan for chemo.
And you didn't give me a whole hell of a lot to go on. You are stage one, and that is great news, you told me. Your cancer is very unlikely to have metasticized, but we need to make sure it won't in the future. There are no maintenance therapies for you so you have to do chemo. You told me that there were no material differences in the kinds of chemo I was offered (failing to mention the drastically different side effects, however). You offered me a clinical trial that included Avastin. When I challenged you on why I would be offered a clinical trial that was intended for late-stage breast cancer, for a drug that could bore holes in my lungs, intestines, and spleen, you said this: "Because you have a tumor of greater than 1 cm, you are eligible. Everyone in that case is eligible. We like to see people enroll in trials because that is how we do research. You are under no obligation to do it. It does not increase chance of survival in your case. These are all good therapies for you."
OK, Doc, no thanks, I thought. I didn't realize then that my honesty in thinking the whole trial was insane begot your honesty in telling me why you offered it to me. I didn't realize then why you looked at me so strangely when I rattled off all of the side effects I wanted to avoid by not taking Avastin. Jesus Christ, you must have been thinking. I gave this girl a 60-page document full of medical-speak on a clinical trial and SHE READ THE WHOLE DAMN THING. I should have seen that look in your eye that said, well ok. Here we go.
And then we started dancing, you and I. It was not a mating dance, but a dance of war. You had an unbelievably obnoxious way of seeming to deny everything that was happening to me when I started chemo. Most people don't lose weight on this regimen, you said. Morbid insomnia? I've never heard of a patient not sleeping at all for five nights. You are still vomiting? Impossible. Bone pain ten minutes after your neulasta injection? How strange. And then, your favorite turn, your favorite move:
"You look great."
Don't even get me started, doc. I'm bald, and I only weigh 110 pounds, and I am so weak I can't feed my baby his food with a spoon because my hands shake too much. Granted, I was somehow still going to the gym when I could and walking every day. But no matter. I started to self-diagnose, took myself off of almost all of the side effect meds (thanks for offering me that anti-psychotic medication to treat my....nausea?), and started acupuncture. I stayed with you because I heard you were one of the best, and because I loved your chemo nurse. Her bedside manner was almost opposite of yours, and she scoffed at the very notion that I should get a port if I didn't want one. She was patient, and she never blamed me. She agreed that I am some kind of freak who reacts badly to all drugs, telling me at one point "when you finish with cancer, don't ever take any medication. ever! for the rest of your life."
So I stayed. I stayed through continued denials about what was happening to me, allergic reactions, menopause, all of it. Maybe now I have some sense of why.
I made it through. You told me, "now you are done with chemo. You and I can just have, you know, social visits."
What was that? A hint of humor? Of humanity? Admitting that you knew I wanted to strangle you?
Every three months I've gone back to you. And here's the thing: Our visits are mostly, well...social. You talk to me, ask me questions, take off my gown, feel my breasts and push my body onto the table so you can feel some more.
You don't give me any blood tests. Nothing to look for tumor markers. No MUGAs, not after that first one to see if I was eligible for AC chemo, even though I had a heart problem on taxol. When I was in active treatment you refused to give me bone scans, arguing that I should switch my forms of exercise (erging, spinning) or stop wearing heels. We're talking about cancer and you're giving me fashion advice? Asshole!
Many people have told me to switch oncologists on this fact alone. Most of the women I had talked to with breast cancer got blood tests the moment they walked in the oncologist's office, even if they didn't know why. Multiple MUGAs could be routine. PET scans, CT scans, the works. But not for me; my dance instructor believed in only the basics. Nothing but mammograms? How do you know if cancer has spread? other survivors would ask incredulously. Well, according to you, I would know. I would rest, and wear flats, and my back pain would just get worse. It would never stop. If I was short of breath all the time, well, maybe I had breast cancer in the lungs, or a heart condition brought on by chemo. Headaches that don't go away with aspirin? For days at a time? Extreme fatigue? OK, maybe there's a problem. You always told me this: "I don't offer you tests and scans because you don't need them."
And here's where you made a mistake. All you needed to do was tell me WHY I didn't need them:
If I had metastatic breast cancer, knowing it now when I was asymptomatic, as opposed to knowing it in six months when symptoms appeared, wouldn't make any damn difference. My prognosis would be the same. You didn't tell me this. You didn't tell me that because I was triple negative, it was unlikely for my cancer to metasticize to the bone, like most breast cancers are known to do. Triple negatives usually attack the soft tissues, bypassing the bones and going to the brain, liver, or lungs.
And no matter what kind of screening I would do for that, I would not live very long if I had metastatic triple negative breast cancer to the brain.
And, further, I would have those months of my life back. You always tell me "enjoy the holidays" or "enjoy the summer," and now I understand. You ask about symptoms, and when I don't have any, you are pleased, and you assume my cancer has been held at bay. Why put me through more tests, more fear, more agony of wondering and waiting, if there will be no material difference in outcome?
Now I understand. But you should have told me. I am a very smart person. I am a grownup. It's my life, and my potential death, and you should have told me for this reason:
Because I asked you. I asked you over and over again. Some people don't want to know the truth, and I get that. Some women need the peace of mind that a clean scan or a good blood test can provide. Maybe most women need that. And you, you are a stubborn son of a gun and you don't believe in doing medicine for the sake of peace of mind, and you assumed I was like everyone else, so you didn't tell me.
Here's the kind of person I am: I don't want to do a mammogram right before a major event. Many people like to schedule such tests before holidays, for example, so they can get the good news and enjoy themselves. Not me. I see bad news lurking behind every corner. I want to enjoy what I can, then do what I have to do, and if the news is bad, well damnit at least I enjoyed Halloween, or Easter, or whatever.
I don't have a general problem with regular testing. I did it all my life. I had epilepsy, remember that from my chart? Every six weeks I had to do blood tests to see if my medication was poisoning my liver (it was, but not too badly, so I had to stay on it). I had to do regular EEGs to see if my seizures were declining or changing (they stopped on medication). These tests made sense to me even at six years old. I understood why they were necessary: dosage might need to change, medication might need to be stopped and swapped with something else, they might need to do something else entirely if medication didn't work.
So I get it. But it's not the same with early stage breast cancer, is it? You just have to hope that it went away, that early is what you had, and that it doesn't change on you. You just have to hope, and fear, in ways that other people cannot understand. And now I can see it. I felt wonderful when I found out I had breast cancer. I was so healthy, and vital, and alive. I had cancer for years, I learned.
I'm glad I had those years, wherein I gave birth to two beautiful children, and that I didn't know I had cancer.
I don't want my daughter to start getting mammograms at age 24 just because she is unlucky enough to have me, a young breast cancer survivor, as her mother. Who has children at age 24 anymore? Here's the thing. Lenny is built exactly like me. I can already see it. She's 6 and weighs 34 pounds. She and I have the same BMI of around 19. She's all legs, small feet, will have my small frame, and probably my small breasts.
And if she ever had breast cancer, she would know.
I felt it even though I was lactating and the odds were completely stacked against me to feel it. I have no fat in my breasts, just breast tissue, and, at the time, milk. My ob told me "you felt that thing as soon as it was palpable. I don't know how you did it but you saved your own life."
For the love of God don't take my daughter's sanity, fertility, and youth from her by making her do tests that will not cure her of a cancer that is either there or isn't there. Mammography doesn't cure a damn thing. But if something is found, it changes your life forever. And at age 24, I want her to have those years.
Of course, my daughter will never have breast cancer. If I have anything to say about it she will stay skinny, and never go on the pill, and unlike other parents who might struggle with their kids having kids at young ages, I'm hoping that Lenny has kids way before 30 if she chooses to have them at all. I can't let my mind go there.
Because it was all so awful, chemo especially. It was all so hard. It still is. There is a feeling of isolation that follows me like a cloud, a point at which I can't relate to women my age. I can't even relate to myself sometimes when I feel that I am having more pedestrian problems. I lost friends, and I lost some aspects of myself, but I am going to tell you this:
I would do it again.
I never thought I would say that, but I would do it again.
Because now I can see myself the way you did. I can see myself bald, and skinny, and exhausted, and ranting, and furious when you looked at me and deadpanned "You look great."
Because, after all, I was yelling in your face. Screaming, using big words, gesturing grandly in your office, about to start a fight. I was reading all the shit you gave me, exercising, raising my kids, going to work, having sex with my husband, refusing your advice on what medicines to take and just generally being a royal pain in your ass.
I was so...alive, wasn't I? I was still...me.
You could see it, and I couldn't. Just like when I saw this picture of me in a bikini, and I thought ugh, I look awful, I have no business putting a picture of myself wearing that online. I thought it would be good to follow up on my last blog, since I don't think I look like any kind of athlete in any way, and I thought it was funny to point out that all of my radiation tattoos are visible but I've stopped caring. While I was complaining about how I looked Gabe said, shut up Katy. How could you look fat in a size 2 bikini?
He could see it, and I couldn't. He could see me in a way that I couldn't see myself. So it was with you. I couldn't imagine looking like this now, considering what I looked like then. I couldn't imagine the future at all. And I thank you for sparing me the extra tests and the hand-wringing.
Now don't get me wrong. I never, ever in my life want to go have a beer with you. I think you need some serious help in the people-skills department.
But your cancer-fighting skills were apparently on point.
Till our next social visit Doc. Till then.
Monday, April 2, 2012
So today I wanted to give a shout out to some of the happier, more pedestrian milestones we've experienced over at my house recently:
Lenny, who incidentally recently turned six, got into an excellent gifted magnet school in the Chicago Public School system. At first I felt ambivalent about this, as my innate personality bristles at the intense separation and tracking we've instituted amongst children at such young ages. Then I thought...wait a second. There are only 30 kids in the city accepted into this school. If she can cut it through eighth grade, she is almost guaranteed a spot in a selective enrollment high school in 8 years (if those still exist). That saves us 12 years of tuition (a damn good thing if you own two houses). It also means that if Augie doesn't get into a magnet school for grades 1-8 (which is fine, because the local public school is good as well), all the tuition we've saved for her for 12 years and him for 8 years would enable us to send him to private high school if it came to that. Thanks, Lenny! You're better than the IRS at tax refund time!
Not to be outdone, on the same day that Lenny received her acceptance letter for this school, Augie up and decided to potty train himself. He had been doing well with wearing underwear, until it came time to poop, and he just wouldn't do it without a diaper. Then he changed his mind, and just like that, he was done. We can now officially retire the diaper bag. Now, I've never been a huge advocate of worrying about potty training in general. You don't see many ten year olds wandering around wearing diapers, so why argue with some stubborn little monster? The kid can barely sit still or contain himself for any reason. Why would I fight him about that? My mom tells me I just used to fly through the room all my life as a child, like a tiny little blur, and she didn't see the point in trying to make me sit still to use the bathroom or do anything else.
Now that my son has reached this milestone, I find the conversations strangely unnerving: "Look mom! I fit my penis in my underwear!" Or, peering in the toilet, he decides what kind of animal that shape looks like. Or, I give him a Snow White doll as his present for this achievement, and before he asks if he can sleep with her and takes all of her clothes off (she is, he decided, 20 years old, so I guess I can be glad he isn't interested in someone underage), he looks simultaneously happy and disappointed when he says: "That's Snow White. The Doll."
Jesus, mom, didn't I tell you I wanted Snow White? The GIRL? Like when I said I wanted a mountain from Santa, I wasn't talking about a toy mountain, woman.
I can't say I've had any milestones recently, really. What I see as an achievement might seem ridiculous to everyone else. For example, I made an appointment at the gym to have my measurements and body fat percentage assessed last week, and I was pleasantly surprised by the results. My weight and BMI are the same as 9 months ago, but I've reduced my body fat percentage to 17.2% down from 17.9%, and most of my other measurements have gotten smaller, with one notable exception. My thighs are an inch and a third bigger. Holy quads, Batman! No wonder I've had to buy new shorts.
Speaking of spinning, we had a huge milestone when Gabe accompanied me to the gym for a few classes on the bike. Gabe! In a gym with other people! Not just trying to do three pushups with me lying on his back (those Katy-ups are actually pretty impressive) or doing pullups on the monkeybars in the park. Those were some moments of joyous, ok not really, but at least sweaty and contentious, bonding. The consensus was that he hated it, and he wants to box instead, but he gained some appreciation for why I love it, and now he knows how fast I can sprint.
What else? Well, against all breast cancer advice, I've become one of those people with a signature winter and summer drink. Thus, I have just finished off my first enormous bottle of Tanqueray. By myself. It took me a while, but still. I was never much of a drinker before, and I don't think my nightcap ritual puts me in that category, but at some point I guess I figured, what's the use of trying?
Gabe and I are quietly approaching the 9th anniversary of our first date, so there's another milestone. Soon we'll celebrate a bunch of birthdays: Augie's, Gabe's, mine even. I'm pretty sure I'll keep getting older for a while, even though the following things are also true:
When my kids hit these milestones, I feel the normal surge of parental pride and happiness. I also think to myself, thank God. Every time they achieve something, every time they move a little further into their own futures, I think: See, I was here for that. If things take a turn with this damn cancer, at least they got to that point. They will be educated. They will use the bathroom by themselves. They will develop their own taste in women, and in men. They don't need me. Other parents get wistful, or cry, or feel useless, in these situations. I think YES! THEY DON'T NEED ME! THEY'LL BE FINE! If I have to go, that is. Let's hope I don't.
My body itself feels like a milestone. There's so much I can't do, and I'm not saying that to be defeatist. I can't do high-impact sports because my hips never grew in normally after my car accident and I never had physical therapy. My left pec is permanently burned and I still have chronic pain in the breast/chest area that can be so bad I wince and tears come to my eyes, and it comes out of nowhere, when my thoughts are far away. I still have to ask them to adjust the light/fan combination at the gym to dilute the strobe effect so I don't have to worry about having seizures. When my back hurts, or I get a bad headache or I suddenly have to go to the bathroom all the time because I have a cold, I worry that my cancer has spread. I am already in the near-panic zone awaiting my next mammogram in a month. I am living in a perpetual state of bated breath, crossing my fingers and hoping hoping hoping to get to 2 years NED, something most moms my age don't think about on a daily basis.
When I go on business trips, I ask for the pat down at the airport, and I realize that I will have to do that for the rest of my life, to avoid the extra radiation from the full-body scanner. On those same business trips, I'm known to do weird things. When it's 75 degrees at 6 pm in Kansas City, I think it's a good time to put on my bikini and go to the outdoor pool. And then I swim. By myself. In the rain. I go inside when I hear thunder. Men look at me funny. I realize that someone with a seizure disorder history should never swim alone.
I realize it. I realize that it might seem like loss to some people, to think of things that I cannot or should not do. All I can think is, look! I'm 36! I've had kids, and cancer, and epilepsy and all kinds of other things. And the girl 15 years younger than me is reading my assessment results in the gym, and after announcing my body fat percentage she says to me, here's where you are, and she points.
To the line that says "athlete."
Wait, are you talking about ME? Athlete, my ass! That's not a real milestone, I realize. It's vanity more than anything. Unless you have lost the ability to do just about everything with your body that a body was meant to do: eat, sleep, walk, talk, have sex, sweat, cry. Then it is a milestone. It all is--this body, those kids not needing me, the calendar turning into another month or year. This life is a milestone, and all of that cancer stuff was just a part of it.