Thursday, May 29, 2014

Day 1,445: A Letter To My Son on His Fifth Birthday

Dear Augie:

Today you are five years old, and I am writing you a letter. Someday you will come to realize that most of that time that I spent tucked away in the house somewhere writing, I was writing a long, long letter to you and your sister. I wasn't writing it for the normal reasons that sent other mothers to the far reaches of the Interwebs to divulge the secrets of their souls. I was writing it so that you would know me, in case you would never have the chance to know me, because I died before you were old enough to remember me. I was writing it so that I could keep telling you stories, even after I was gone.

That sounds like a cryptic beginning to a letter to a boy who has not yet started kindergarten. And yet, that doesn't concern me, because the hard truths of life have never been far away from you, and you have never been unwilling to admit to them.

Long before I had cancer, when you had just been born, your father and I knew you were an old soul. When you were just a month old, he turned to me and said, Kate. I think he's been here before. And there we were, a couple with no spiritual life to speak of, only half-jokingly discussing who you were before your reincarnation. After all, what three week old baby laughs, a full belly laugh, practically slapping his knees, while he dreams? Laughter is tied to memory, and that is the reason that most very small babies cannot laugh--what do they have to remember? What could be so funny, in less than 30 days? Our guesses as to who you were in the past have evolved with your antics, but we know for sure that whatever life you lived, you had a damn good time.

Of course, life isn't always a good time.

When you were not even one, I had to stop nursing you. You know that by now, if you are reading this; it is a theme of this long letter. You might also know, but you might not, that when I was first diagnosed with cancer, I never once cried around your sister. She was four, and felt everything and understood everything so keenly. I am admitting to you now that I cried around you. I took you for walks in your stroller, and I cried. I talked to you, the way I always talked to both of you when I walked you in your strollers, about whatever was on my mind, as if you were just tiny versions of adults, which, of course, you were. But I also cried, and you would just look at me, and while I told myself that you were a baby and you would never remember your mother crying in that desperate and ineffectual way that she cried in short bursts that came out of nowhere, I knew even then that you would remember. You probably don't know that I chose my surgery path in part because of you. How could I justify a longer recovery period that would stop me from being able to hold my infant son if it wasn't medically necessary? I held you within two days of having my lumpectomy. I couldn't move my left arm, but that was no matter. I have a video of your sister taking her first steps, and I don't have any memory whatsoever of you learning to walk, as fogged as my mind was by grief and chemo and fatigue. Your second year of life was a hard one, but we got through it.

(the last time you ever nursed, on Mother's Day, 5 days after my first cancer diagnosis)

And then--well, and then. We had to go through it again, but this time, it was you who was four, who felt everything and understood everything so keenly. It was you who had night terrors, who began nonchalantly talking about death, and God, and what came before us, what is left when we die, it was you who asked to kiss my missing breast to make it feel better after this round of surgery. I thought I had spared one of my children the memory of this mess, but I was wrong about that too.

Having a mother like me has had its benefits, I suppose. I taught you how to throw a perfect spiral. You appreciate bald women and think they are beautiful and normal, and you probably always will. Having me as your mother means you haven't had to be afraid to talk about things that mothers and children dance around, like illness, aging, death, the world's unfairness, and fear. I am the mother who ignores advice about how to raise a son, how not to crush your spirit and ruin you by assuming you could sit still and behave, because I know something that I do believe you know but not everyone knows. Yes, you are a boy. Yes, you are willful and defiant and easily distracted and you hate sitting still and you are aggressive and loud and funny and you get a lot of attention and you love to shake your little booty and you are always one step away from trouble.

The thing is, Augie, I knew a kid like that.

And no, it wasn't your dad. Haven't I asked you a million times why I am always the one to finish eating first? Because I don't like to sit still either. I've just had to learn how to both be myself and follow some rules, like sitting my behind down at the dinner table. It's hard, but it can be done.

You and I are so much alike that I know damn well that I need to tell you that you don't get to act however you feel like acting, however nature tells you to behave. I didn't get by with it, and neither will you, and not getting by with it didn't ruin me or break my spirit, and neither of those things will happen to you, and hell yes you can sit down and read. I knew you could, but you just didn't feel like it. That's all right. For my entire life, my mother, your beloved MeeMaw, called me...Little Shit. So I get it.

(there I am, breaking into my father's briefcase)

And why wouldn't we be alike, you and I? Now is the time, in this fifth birthday letter, for me to tell you something I have never told anyone. You know by now that I saw you, I bore witness to you, when you were just an egg. I saw the egg that became you on an ultrasound machine during a doctor's visit to discuss my secondary infertility, which we now know was probably caused at least in part by breast cancer. I got pregnant with you that night.

And there it is, that out in the open secret:

It is almost definite that the entire time I was pregnant with you, and the entire time I was nursing you, I had cancer. After my diagnosis, after that awful weaning, your father and I painfully laughed about how you always preferred the left side. You literally fed on my cancer, and you thrived.

I brought you to life in the midst of my death.

It's dramatic, but it's true. And it is something you have always known; in fact, you have spent much of your life believing that I had cancer not in spite of giving birth to you, but because of it. So, while my body was turning on itself, it nourished you and enabled you to become a real person in the world. You have always--ALWAYS--been a person that understood that life and death are opposite sides of the same coin, because that was the environment in which you were born.

So, I get you, with your exuberance for the little things, your sheer force of will, your impatience and your rhythm and your lack of self consciousness and the deep thoughts you have and your interest in the whole world including the things you know are too old for you like sex and whiskey. You try me, because seeing you is like seeing myself, though you are a tad wilder and a much better liar. And I remember what was going through my mind, and the things I plotted, and I know we have our work cut out for us. The chickens have truly come home to roost.

But there are things that I think about that I very rarely say, and I am relieved that I don't need to say them, because someone else who has not yet learned what he is supposed to say says them for me.

Like this: the day of Lenny's 8th birthday party, which might have been the last one when the older kids still tolerated your presence, when you thrilled at the prospect of spending the afternoon with those kids, yelling and showing off and having the time of your life and then collapsing exhausted into bed and exclaiming this was the best day ever. And then your father, telling you to wish upon a star. And you, getting quiet, pensive, almost shy. You, claiming you could not tell him what you wished for, and him saying that was up to you, though if you wanted to tell him, you could, because you could tell him anything. And in the midst of your best joy, you were thinking this:

"I wish we didn't ever have to die."

You were saying to us, this love is painful with its goodness, these moments are more perfect for having been lost, right from the beginning.

And you were right. And me too. I think things like that too. Augie--I wish, I really, really wish. But know this: me first.

I love you.

Happy birthday.


Friday, May 16, 2014

Day 1,432: Following Up and Following Through

This past week, I had the pleasure of having three follow-up appointments for my cancer recurrence. The first was the most dreaded--the annual mammogram of my right breast. I don't have a left breast anymore, so I'm off the hook on that side, so to speak, but I will still need to have yearly scans of my healthy breast for the rest of my life. I wasn't really concerned about having an abnormal mammogram, as I have never felt anything odd on the right at all. But the whole experience is nerve-wracking for me, as the very first mammogram I ever had was just to confirm my cancer, and I don't trust the damn things, as I had a clean one last May on both sides and then was diagnosed again just two months later after discovering the lump myself within weeks of that clean scan. I mean, hell. Even after they FOUND my tumor on ultrasound, and threaded a goddamn wire INSIDE OF IT, they could not locate it with a mammogram. So I get anxious. I yell at people in my house for a few days. I sit in the waiting area and my husband texts me knock knock jokes and I simultaneously want to kill him and love him for trying to help me through it.

This time, I was called back for an extra picture--they had only taken two. I was used to getting at least 8 or 10 on the cancer side, so this just seemed like nothing. But getting called back, after having cancer, is a surefire way to go on the verge of losing your shit. The technician just tried to casually tell me to take off the gown etc. and I glared at her. I asked "why did she call me back? What did they see?" I might have been standing there half-naked but hell if I was going to move if she didn't tell me SOMETHING. So she said the radiologist wasn't really worried, but I still have dense breast tissue so she just wanted one more to make sure she could see anything, given my history. And within about 90 seconds of walking out of that room, I received my results. That's one thing--they don't make you wait for results if you've had cancer. They know you might trash the joint if you have to wait. The technician told me I looked great and handed me that piece of paper. For the first time ever, I read the following words:

"Your mammogram shows no abnormalities."

Once you've had breast cancer, the cancer side will never, ever show up with "no abnormalities." You might get "findings that appear benign," but you will not get NORMAL. Many women who have NOT had cancer never get that.

So, my right breast just continues to be its helpful, cooperative, perky, nippled self. I'll go on the record saying that I'm glad I didn't cut it off--there was no reason, genetic or otherwise, to do that.

After the relief of that visit, I went to my oncologist. I had graduated to yearly visits to him as well last year, but then I had a recurrence, and I am back to every 3-4 months for the next several years. He's just so affable with me now, when he had been so...otherwise the first time around. It's like we're buddies who play poker together. He did the breast exam, felt my arms, listened to my heart and lungs, felt my abdomen and throat, looked into my eyes. It's like a normal physical except I know what I know: He is looking for another local recurrence, signs of lymphedema, heart trouble from adriamicin, breathing problems from lung mets, possible liver or brain mets.

You know, casual.

Having found nothing, having marveled at the continuation of my completely normal menstrual cycles even after all the D&C bullshit, we were basically done. No blood tests, no scans, nothing. I learned long ago after screaming at him and forcing him to just TELL ME WHY, that I would never get blood tests or scans unless I showed symptoms because it wouldn't do a damn bit of good and no test could predict mets, only diagnose it once it had already happened. And the unspoken follow-up to that statement is that once mets is there, it will always be there.

So we were done. And I told him about how distracted I've been feeling, and that I might want to talk to someone. He said that was reasonable and there was no reason not to do it, but that I could also give myself a break. I said I got paranoid about not taking carbo and he insisted I should not feel that way, that I made a good decision, that the old chemos like the one I did come back into the forefront. I asked if I should take vitamins, and he said I should--if I like taking vitamins. I asked what now--what do I do? He shrugged. He told me to exercise and try to eat well. I said that I've been having a drink whenever I want to have one, in part to calm down, and he said "well then that's why you can't lose the last 8 pounds!" (I had complained about the chemo weight that I can't seem to lose). I sheepishly said yeah, I know. And he responded:

"Now you realize I didn't say you shouldn't do it. (laughing) Life is important. Do what you want to do. It's a tradeoff. Maybe the weight is worth it--you look fine, you look great. You deserve it."

But doc if I drink, I mean...

"You are not going to rock the boat. That's not what's going on here. Enjoy your summer."

And then I went and bought my first new car. And by that I mean MY FIRST NEW CAR. I got my driver's license on my 16th birthday at the tail end of the summer of 1991, and I have never, ever had a new car. I never have cared about cars or seen them as the playthings they are for other people. I guess that's because I almost got killed by one when I was nine. The sex appeal has just never been there. On the other hand, I did harbor some love for the car I learned to drive on, the ancient Delta 88 Olds my mother had bought a few years before with the electric seats that was laughably huge for my 95 pound self to be driving. I called it The Ogre. I loved that car for enabling me to be alone. I remember so clearly how anxious I got toward the end of high school when things were so bad at home and in general and I would get in that car and drive somewhere and just sit there, smoking a cigarette I had stolen from some adult because hell if I ever bothered to get a fake ID. And eventually I would feel that calm. And I would laugh at myself--that kid who didn't even inhale or drive fast.

After that car, I never cared about another one. My grandfather gave me his old Dodge Neon when he was told he could no longer drive at age 90; I was 25 and had relied on public transit, friends, boyfriends, etc., for years. We bought our minivan when Lenny was one and we were in the middle of renovating the kitchen in our old house to the tune of $25k, but I heard of this local family who had had their SIXTH CHILD WHO NEEDED A CAR SEAT and so a minivan was no longer good enough and they needed one of those kidnapper vans, and we got the damn thing for $9k which might have been the best deal in the history of used cars. I mean hell, that was 7 years ago and the thing shows no sign of failing anytime soon. When Gabe was a young man with a paycheck and high expectations of his future, he bought a car. At the same age and stage in life, I bought...a condo. I made tens of thousands of dollars on that condo without lifting a finger in just three years, and his piece of shit car is still sitting idly in our garage. But we do have the memories--when we were dating, he used to carry me to the car. Just pick me up and carry me, for blocks sometimes, and I never really knew why. We had our first kiss in that car on our first date. We drove that car home from our wedding. We brought Lenny home from the hospital in it.

But it is still a piece of shit, albeit one that at least represented Gabe having a clue how to buy a new car. The whole idea has just stressed me out, like everything else has stressed me out if it involved making a decision recently. But I walked out of the oncologist's office and said, screw it. We're walking to the dealership. We didn't even have a checkbook on us. Hours later, I drove that car across the city in the rain to my house. And I felt calm, and I realized I could still make decisions and do things, and I realized that maybe some of my recent mental paralysis might have been due to my follow-up appointments, my 4 year cancerversary, the reminder of the clean mammogram that meant nothing last May, the upcoming anniversary of cutting off my breast and starting chemo again.

I mean, really, who could blame me?

So yesterday I had my follow-up with my surgeon, who is an extremely personable, kind younger woman who talks to me about our kids and had to break the news that she was moving to Michigan, which I knew already, since my oncologist had told me. She said a bunch of surprising things to me. She told me I had a great year, that I looked amazing, that everything was good, that I was done. She looked at my reconstructed breast and asked if I was happy with it. I said, well, considering what I wanted was to look normal in clothes...oh wait, no, I didn't want it at all. I mean since I didn't have to do more surgeries, and it's doing its job in that I can wear all my normal clothes and bras and swimsuits, yeah, it's good.

She was so pleased. She told me that the plastic surgeon had just done a one step reconstruction on another patient when I came along, and most surgeons aren't willing to do them but she knew I was the right candidate. And why not? Why worry about one more thing, about your clothes fitting, about a prosthesis? You did the surgery, bam, you were done. We talked about the necrotic flesh that cropped up right after the mastectomy that had to be scooped out and she was on vacation at the time and didn't even know it had happened. She told me she was freaking out, panicking when she learned, and there I was, matter of factly laughing about it. She said, I mean, you put a bikini on two weeks after your mastectomy. That was amazing. I will never, ever forget that.

We got into conversations about plastics, about how people confuse surgery that is medical with surgery that is cosmetic. She told me that if I couldn't lose the chemo weight, that was my body's way of telling me I was too skinny before, and I should just go with it. She sounded genuinely shocked when I said I thought I might need to see a therapist--but you are so GROUNDED, she said. You handled yourself so beautifully, you took care of everything right away, you just powered through it. You made great decisions, you asked great questions, you seemed less surprised than the rest of us.

All of that is true. I told her, well, cancer wasn't my first trial. Hell, this cancer wasn't even my first CANCER. There was nothing to do but get it done.

She began to tell me a story of a woman who was completely losing it that day upon learning of her 5 cm tumor. She was hysterical, she wouldn't leave the office, her husband wouldn't look at her or speak to her. They have small children and she hoped this woman would GET IT TOGETHER. I said, well, she won't have a choice. You just said her surgery is in two weeks. It will be real enough then. Let her rave a bit.

She didn't understand it. I don't either, but I am not that woman. I am this woman. My methods and reactions are not necessarily better, but I honestly couldn't be different if I tried. I envy those who can rave and cry and get lost in grief. I sometimes curse my own calm and rational demeanor. It seems absurd given the circumstances.

And then I told her that I worry about my chemo choice and she told me something I never knew. They had considered me for a trial, without telling me, that involved 5 chemo agents. They had like a day to decide if they should mention it to me and they decided not to, as I wasn't keen on big amounts of chemo. Her friend, a woman like me, with a 1 cm TN tumor with no node involvement, was put in the trial.

That woman is now dying. She has been given a year to live.

Of course, she is not dying because of the trial. She is dying because her cancer is that aggressive. I think this was supposed to make me feel better, to make me realize that there is no miracle, that I made a good decision. I was supposed to feel better because, my surgeon said, I was DONE. My cancer was not like that woman's cancer, for whatever reason. It was almost a year later, and I could be considered cured.

Cured. She said that.

She said that if it were going to come back, she thought it would have by now.

I just smiled.

How many women with TNBC do I know who thought the same thing, only to develop mets three years down the line? Too many, I tell you. Way too many. I am not in denial. I do not think that because others have survived for years that I would necessarily be one of those women. I know I could be, but I know I could not be, just as easily. On the other hand, my cancer decided to beat the hell out of my left breast with four different tumors and then for some reason has for four years left the rest of my body the hell alone. Who knows why.

Who knows.

What I do know is that the fog is lifting for me a little around here. I can imagine making other decisions, reading great books again, maybe even making plans. I can imagine living a long life. Even if it doesn't come to pass, I can imagine it. I can see myself the way others see me, as the one who did things they had never seen before, who gave voice to things they were afraid to bring up, who just kept taking the hits because having wounds that heal is better than being knocked out cold.

I can see myself reflected in that surgeon's eyes when she came back in the room one more time when she didn't have to, shook my hand, said to give her regards to my husband, to have fun with my kids, when she complimented my shoes, told me I could call her if I ever really needed to, even in Michigan, when she gave me the kind of goodbye you can only give to someone who either doesn't have much time left or has way more time than she could imagine:

"Take care. And just do it. Do everything. Do whatever you want."

Friday, May 9, 2014

Day 1,425: Not Your Hallmark's Mother's Day

Mother's Day is a little bit...awkward around here. It always falls just a few days after the anniversary of my first cancer diagnosis. On the day itself, thousands of people march past my house for a community breast cancer walk, making it impossible to forget about cancer and the potential death it represents on a day that is supposed to be about motherhood and the joy it represents. Even that event is complicated, as it is not simply painful or a stark reminder of the radiation I did at the hospital that benefits from the walk, the acupuncture I did to make it through chemo on two different occasions. It also allows a chance for me to see how many people truly love and support me; this year, about 50 people have joined my KatyDidCancer team for the walk. Mother's Day is also a reminder of what cancer has taken from us, as I am forced to confront the memory of how I wanted to have a third child, a possibility that my aggressive cancer took from us.

On Mother's Day I think about strange things, like being 35 years old and telling my husband I didn't want him to have a vasectomy because if I died I wanted him to be able to have kids with someone else. I remember his anger when I said this, and I remember not having the heart to tell him that I secretly wanted my kids to have some kind of mother figure in their lives, so my statement was not just maudlin, not simply practical, but actually kind of...hopeful, in the weird way that hope presents itself in our obviously mortal lives.

So, this holiday leaves me feeling ambivalent. I have been a mother for nine Mother's Days, but five of those have been marred by these wayward thoughts.

Wayward seems to be the way of things around here, though, and there are worse things, I suppose. Sometimes the eccentric nature of this little family unit provides some truly insightful moments.

Like the other day, when my son, who will be five in a few weeks and has lived almost his entire life with a mother with cancer, was talking about a baby who needs to have heart surgery. I asked if he was worried about the surgery, and he said no, but he thought it was weird that the baby needed surgery. And then this conversation happened:

K: Yeah it is sad when such a little baby needs surgery.
A: Plus, he's a boy.
K: Huh? What do you mean?
A: Well, it's usually girls who need surgery.
K: That's not true. Why do you say that?
A: Because girls are the ones who get cancer.
K: (long, long pause): Well, first of all, the baby doesn't have cancer, and that's not why he needs surgery. People have surgery for all kinds of reasons. I've had four surgeries that had nothing to do with cancer. Your dad has had two. Second, why do you think girls are the ones who get cancer?
A: (shrugs): Because girls are the ones who have babies.

Long, long, pause.

K: OK. Do you think I had cancer because I had you?
A: (shrugs)
K: (lying, because for all we know, pregnancy is exactly the reason I had TNBC, but how in the world could he know that?): My cancer had nothing to do with you. Nothing. People have babies every day and don't get cancer. And besides, men get cancer. Kids get cancer. Look at me. My cancer has nothing to do with you.
A: (humoring me) OK mom.
K: Go to bed. Give me a kiss.

And then, he did the thing that only Augie does, that someday too soon he will be too embarrassed to do. He grabbed my face with both of his hands and swooped in for his kiss, and then gave me a crushing hug. And then we just looked at each other for a minute, forgiving each other for how hard we've made it for the other by feeling everything so completely, nodding at each other, acknowledging the life and death that tie us together and make us ask imploring questions in the dark.

Sunday, May 4, 2014

Day 1,420: 4 Years Later

Four years ago today, I got a phone call.

You know the rest.

What should I say today? If life were different, I would be celebrating four years cancer-free, kicking cancer's ass, and all of that. I would be one of those women who gave other women who are newer to this disease something to look forward to in their hazy and uncertain futures. But, life is what it is, and I am not that woman. I have not been cancer free for 4 years; it's possible I was never really cancer free. It's always possible--always, for all of us who have had breast cancer--that I have cancer right now.

But, you know, four years ago, I got this phone call.

I had a baby at home. I nursed him five times a day. My daughter was just four years old. I was so fit and healthy and alive and, yes, even young, unlike how I feel today, when it seems that the most recent round of treatment added years to me, at least on the inside. During that phone call, the pained, cracking voice on the other end of the line told me that I had cancer, but not just any cancer. I had an aggressive and difficult to treat cancer (though she didn't use those words, not that day) that would necessitate extensive chemotherapy.

And then all this shit hit the fan.

So what is the punch line?

The punch line is that four years later, I am still here.

Things didn't go the way they were supposed to go, but they never really have, not for as long as I can remember. Sometimes I am forced to realize that no matter how hard it's been, going through this hasn't been as hard on me as it has been on other women who experience breast cancer as one of the first truly physical trials of their lives. I never had a lifetime of health and physical ability and overall attractiveness to lose. I had epilepsy, I foamed at the mouth and convulsed in front of the entire sixth grade, I was disabled, confined to a wheelchair and kicked out of school because of it and forced to stare down the adults who looked at me with disgust. So cancer wasn't the first trial, and I knew how to handle some of it.

This second cancer has been different, however. There are some who could handle the first cancer with us, but abandoned us with the second. Some have grown tired of it, some fear what this represents--the reality of not always WINNING, no matter how much you might deserve to win, no matter how hard you try. Some cannot accept that bad things happen to good people, and so often, they happen again and again.

And so we have been lonelier, but more sure of those who are still around. We are more resigned, but also more...SOLID. We might have some PTSD, but we are still trucking along.

Four years ago, I got a phone call.

It would be easy to say that I never thought I would get another one like it, but that would be a lie. I knew that second phone call could come, and others that could be much worse.

I couldn't foresee that I would be in the same boat three years later, but that is not what is relevant today, on May 4th.

What's important is that I'm still in the boat. I haven't capsized yet.

Thanks to those who are still swimming next to me, still standing there with a life jacket. One of these days, I'll meet you at the beach.