Monday, December 30, 2013

Day 1,290: 2013 in Review

Years pass; that's what they do. They pass whether we are here or not, whether we have enjoyed them or not, whether or not we suffered. Time passes, people pass, the seasons change, we get older even if we seem like we are staying the same. We work and sleep and eat and talk and laugh and cry and screw and swear and raise kids and do chores and we have these memories that once weren't memories at all, they were just life, take it or leave it.

I really don't want to leave it.

I'm trying, folks, trying my best to stick around, to enjoy all this humanity everywhere, to see my kids grow up, to live out the promise of my life. I could look back on 2013 and take stock of what the last half of the year brought to me: a second cancer diagnosis, the knowledge that every single time I was announced to have "no evidence of disease" that it meant exactly that: no EVIDENCE, not no disease; the amputation of my breast; necrotic flesh being scooped out of the surgery site shortly afterwards; physical therapy; 10 chemo infusions; a D&C and conversations about the possibility of ovarian cancer; accepting a new job based in another state three days before my diagnosis and the conversations that ensued thereafter; my 4 year old son's night terrors and subsequent therapy; my blog blowing up on me not because people suddenly became interested in me but because I had cancer again and everyone was all HOLY SHIT, I wasn't expecting that.

I could see these things, but because I have experienced them I don't feel the need to see them. I look back on 2013 and see other things. I see my kids growing older, I see my seemingly ageless husband loving me the same as he always has, if not more,I see the friends who are not afraid of me and what I represent, I see my family listening and hearing about all the things I have shared, no matter how personal or difficult they are to hear, and just treating me the same. I see the people I would not expect to feel things for me, including men from my high school, college kids, random neighbors, folks I have never met, technicians and doctors, who tear up or look askance at me and I see in their eyes and I read in their words this truth: people care about me and are glad that I'm not dead, even if it seems like there are other things they could have been pondering.

I see life in all its delicious ambiguity and imperfection. 2013 included a long, luxurious summer and a cold, hard winter. It included paddle boarding on a beautiful lake in a remote part of the country and my kids becoming obsessed with certain sports. It included me performing in a comedy show, my hair growing longer, my husband becoming a little more stoic, more like me, more resigned and less angry at the ravages of fate. 2013 brought to us the largest party we've ever hosted at our house and some of the quietest moments we have known, due to fatigue and sickness.

This year has been like any other, but more obvious in its implications. Time passes. We make wishes, resolutions, and promises and though they might seem minor or wild, they are really all the same. We wish that time could stand still, as we hope that our bodies won't age too quickly or get bigger or smaller, we wish for peace and love and romance and friendship and health, which all boils down to the same thing:

We want more time. I have been saying for almost four years that while the rest of my generation is longing for youth, I have been trying for 40. The truth is, though, that that is not enough. I want more time than that; I want to grow old. I want to be old, to look old, to have white hair and wrinkles and a hesitance in my steps. I want to be able to slow down. I want more memories to keep, more seasons, more of everything that is boring and exciting and MORE.

This is what I wish for myself, and what I wish for you: to have more time, and to make of it what you will, so that when time stops, the clock that was your life would be filled with...enough. Happy New Year. I will leave you with a dream, as I remembered it. May we all have many more.

By Katy Jacob

In dreams, we do things that would be impossible
in waking life, like drive when we know we are sleeping.
The world looks the same as the real world;
or, more accurately, it looks like the real world
that someone else lives in—so we’ve been led to believe.

Something is always just a little bit off:
the streets are wider than they are anywhere;
no one is behind you or in front of you;
noise and light are filtered artistically;
the car you’re driving is much too clean.

Still, you are yourself, singing along to the radio.
Rain is pouring so hard on the windshield
that you can’t see, but no one pulls over in dreams.
You notice bus shelters and dogs and skyscrapers
and you slow down, but you are not afraid.

Suddenly, then, the rain turns to snow—
so much snow that it falls with a crash on the windshield,
which cracks from the weight, and the car stops.
All the power goes out, everywhere, all across the world.
Somehow you know this is true.

Everything is still, and there is nothing but silence,
because time has stopped, just like that,
and all the other people have disappeared.
You consider exiting the car, but you know it wouldn’t matter.
There is only one thing left that you must do.

You tilt your head up so that you can see your reflection
in the rearview mirror, and you smile and say out loud, to yourself,
because nothing exists anymore in the world but you,
“This is what it will be like.”
And then you do the second thing that you must do.

You wake yourself up and listen to the rain
pounding mercilessly against the window
of your bedroom which miraculously actually exists
in a real city in a real country in a real world
where everyone dies alone.

Thursday, December 19, 2013

Day 1,279: D&C

(Here I am in the parking garage afterwards, on this swanky Palmer House bench.)

Some people know what has been going on with me for the last ten days, and some people don't. The easiest way to explain it is here. This might be TMI, but I don't think so; so much of what happens with cancer, and with breast cancer especially, falls under the category of TMI for our squeamish society.

The day before my last chemo treatment, I got my period. Normally, that would be cause for celebration; it would mean that this chemo has not thrust me into menopause, at least not now, not yet. But this was a different kind of period than any I've ever had since age 11, and I had some hella heavy periods in my teens. I immediately felt like I had wet my pants. There was a ton of blood--I mean a TON. Fast forward ten days. As of this morning I was still bleeding insanely, with huge clots passing all the time; I could feel them leaving my body. I ruined a pair of pants and some sheets yesterday. This situation has led to me being slightly anemic; not so anemic that I could not do chemotherapy, but anemic enough that if it kept up for the next two weeks, the whole regimen would probably be put off--and I only have two more to go. I was supposed to be done with chemo after infusions on January 2 and 9, so having this happen now seems like a lot of bullshit.

Ah, but isn't everything with this?

So, I had to go in for a D&C today. I have had so many medical procedures in my life that I was not worried about the procedure itself, but I was immensely angry that chemo had led me to this place. I was pretty sure it was chemo jacking up my hormones, but it was hard to say.

Before I go on, I have to tell you about some other things that were going through my mind. Having cancer means having abnormal conversations and concerns. I am not a normal woman with heavy bleeding. I am a woman who should have been fine on two previous occasions, who was told this was probably nothing, and then I found out what should have been nothing was a very aggressive form of cancer. So. In my house, conversations like this take place, because in all honesty stranger things have happened:

K: OK honey I have to say this. What if I'm pregnant, and I'm losing the baby?

G: Um, what? I had a vasectomy, remember? Is there something you're not telling me?

K: Yeah right. I've had so much time, energy, and motivation to step out on you recently. Maybe it reversed, maybe it didn't work. You know what that would mean?

G: I'd have a reason to be pretty pissed off?

K: That and, well, it would mean...that chemo killed the baby.

And then there is this.

In addition to bleeding, I have gained weight on chemo; about 5 or 6 pounds, regardless of how much I work out. I have felt bloated. In the past few days, I have had abdominal pain. All of these are signs of ovarian cancer; having breast cancer, regardless of my BRCA status, puts me at a higher risk for ovarian cancer.

So my gynecologist said he would do an ultrasound with the D&C that was recommended for me, so he could show me that my ovaries were normal.

And today, I had that ultrasound. I was furiously bleeding all over the exam room, to the point where my doctor said "holy shit!" and started to mop up. Then he did the internal ultrasound, which showed...that my ovaries are not normal. I have what three doctors assume to be hemorragic cysts, or blood clots in the ovaries. They are two inch, shadowy masses. They do not look like the circular tumors I have seen (four of them, people) in my breast via ultrasound. The last tumor, the one that marked this recurrence, was kind of shadowy as well as it sat right by my scar tissue. So I did not feel altogether reassured, especially since they are recommending a complete diagnostic ultrasound in 4 to 6 weeks. My gyne tried to convince me it is not ovarian cancer. But how well can that work at this point? I have been told it's not cancer before, and look what happened. Of course, ovarian cancer would be much more likely to kill me, so there's that.

I sat there feeling ambivalent as they prepared to do the D&C. And wow--that hurt like a bitch. At first, two doctors could get nothing through the suction pump. My endometrial lining is actually very thin and there were no clots there, leading them to believe that my uterus is actually fine, but that my hormones are so jacked that the bleeding is unrelated to anything stuck in the uterine lining. A third doctor, the D&C specialist I guess, came in and suctioned the hell out of me, until I was audibly cringing and clutching Gabe's hand, which is rare for me. He got maybe a third of a specimen cup of tissue and blood.

This may sound strange, but boy was that disappointing. I was hoping they would just scrape everything out and I'd be clean and stop bleeding. I was hoping not to see the look on the other doctors' faces when they said, oh ok breast cancer, it's hormone positive I assume? And I said no, it's triple negative. Their eyes involuntarily widened. They were afraid for me and I could see it, no matter how they tried to hide it. And then they suggested I go on progesterone for a few weeks if my oncologist ok'd it, which I said I didn't want to do unless the bleeding was completely out of control. And then they left, and my gyne told me to just lie there for a bit.

We waited. And waited. And finally a nurse came in and told me to get dressed, and we went to talk to the doctor in his office.

He kept telling me they were cysts, that they would go away, that I did not have ovarian cancer. He saw the look on my face. He said, "you have a terrible disease and the chemo is affecting all parts of your body. I'm sorry you have to go through this again. I'm sorry about your kids. You will follow up with this ultrasound and it will be fine. I'll call the oncologist, we'll make a game plan. You just take care of yourself, take it easy."

And I looked at him and just kind of mumbled that I always do take care of myself, but I am tired of this, I am tired of cancer, I just want to be done with it.

We got up to leave. He shook Gabe's hand (he had said a bunch of hilarious things to him in the exam room, including the fact that he shouldn't act like a jerk because I look pretty good and I could easily replace him), and he told him to take care of me, and Gabe said he always did. Then he hugged me with that big, crushing bear hug. He called me sweetie and said I should hang in there. And then he grabbed my face with both of his hands and looked me right in the eye.

And he said "I mean it. Hang in there." He looked at Gabe and said "I love this girl." And then he walked away.

Thursday, December 12, 2013

Day 1,272: Living in the Blink

I've been thinking about the fragility of life lately. Or maybe I mean the absurdity. I've been thinking about it, but I feel unable to say anything about it. So I thought I would say some things that I've said before, when I had more words than I have right now.

In 2006, I wrote this for my daughter when she was nine months old; this was almost exactly 7 years ago. Cancer wasn't even a glimmer in my eye, though realistically, I probably had it already at that point:

First Winter

by Katy Jacob

No one ever told you what lies beneath
the most beautiful days.

In the whole of your life
no one ever told you about the
heavy sharpness of white lace ice,
the glare in your eyes that you will miss after the melt,
the implied noise just before the branches crack,
the danger and perfection all mixed together.

Remember that I will always remember your tiny hand
curling up to a soft white leaf, which cracked and fell at your touch.

If I could, I’d give you this gift,
this day, a postcard you are too young to receive.
I’d vanish into you
so you could see how you smiled.

Almost two years ago, I wrote this for both of my kids. It's about winter. And other things. I had had cancer already at that point; I believed myself to be a 1.5 year "survivor," whatever that means, though it probably wasn't true.

Frozen Lakes, Explained

by Katy Jacob

We are going to walk out onto the lake.
We will not be the first ones.
There are people in that box, because that box is actually a house.
The people are not really small; they are just on the other side.
It is all a matter of perspective.
The house and the trucks weigh much more than you.
You will not fall in, even if you do fall over.
That’s right, I am making you a promise.
The snow is clean, so you can eat it.
The trees are beautiful, so you can try to run to them.
There are deer tracks; birds have walked here.
No, I don’t know why. I don’t know where they were going.
Do you understand what expansion means?
That is what is protecting you; the cold has made this playground.

This is something I had to wait more than thirty years to do.
This: the ice, the trees, the quiet, those men looking across at us,
the reminder of animals, the looks on your faces,
the way you let go and took off running,
the sound of your voices in the cold when you asked to come inside,
the curiosity that led you to ask for an explanation,
the fact that I didn’t want to tell you,
having waited for this, this moment when you no longer believed me
when I told you that some impossible things are actually possible.
You can run now where you might otherwise drown.
Trust me, trust all those who went before you:
those who knew that it would work, and those who didn’t,
but walked across the water anyway. Especially them.

And before I wrote either of those, I wrote this for my grandmother when she died. They say that life goes by in the blink of an eye, and that what's important is how you live in the blink.

For Marthagene, 12/20/19-7/7/06

by Katy Jacob

there are places
where only the eye

can find you--

or the dead--
we interpret


as a moment
akin to a dance

a kin

to the longing
of hands

in the air

in the pause that follows
when grief defines


time dips back
into shadows

and I see you again

standing in towns
small as specs

living in the blink

Sunday, December 8, 2013

Day 1,268: Night Terrors

When I was 9 years old, I had night terrors. Night terrors are a strange beast. You become terrified of going to sleep, but you can't remember anything that happened in the night. You have nightmares but you don't realize it. I was told to keep a "sleep journal" and write about my dreams the moment I woke up, but that was a losing proposition. I couldn't remember anything. I drove the rest of my family nuts--I would scream and cry rather than sleep. My dad often slept in a chair in my room. I hated the thought of being alone in the dark. It wasn't just a problem for me, it was a problem for everyone else in the house. I went to therapy. It didn't work.

Nothing worked until one day, when I watched a movie on TV about a little girl who died from cystic fibrosis. And I screamed about how unfair that was, and how I could have died, how I almost died. And then I slept normally, having admitted to the fear that plagued me in the dark and in my dreams.

I wasn't being dramatic. I actually almost died when I was 9 years old, after having been hit by a car. I needed to articulate that knowledge, and no one could get it out of me. I just needed to work through it, to accept the universality of mortality, at a time when most children believed that death was something that happened to other people, not to their loved ones, and definitely not to them.

Fast forward almost 30 years. My four and a half year old son is having night terrors. His manifest somewhat differently than mine; he sleepwalks at times, for example, which I never did. He will burst into our room, eyes wide open, and begin talking utter nonsense, or screaming, or both. He doesn't make any sense at all. The other day, he burst in and screamed, "MOM! NO!" Then he said, "DADDY! I NEED TO TELL MOM THAT THE OTHER TEAM IS GOING TO KICK A FIELD GOAL!" It might sound funny, but it wasn't. He proceeded to just scream and cry and we asked him what his dream was about and he just shook his head. He wasn't really conscious at all. He couldn't, or wouldn't, sleep until Gabe stayed in his room with him. The next morning, he had no memory of any of it.

On the one hand, I could be concerned about night terrors because of what they could represent. Night terrors are a symptom of epilepsy, which I had from ages 6-8 and 11-17 (I was "cured," then it came back; I had no seizures after age 12 so either the medicine worked completely or I was "cured" much earlier than 17). We have epilepsy on both sides of my family. However--having had the condition myself, I know what to look for, and I have seen no other signs of epilepsy in my son. After all, I had epilepsy at age 9, but my night terrors were completely unrelated.

Gabe and I realized something last week, and it all began to make sense.

My son has night terrors only sporadically. Specifically, he has them on days when I have chemo, or the day immediately thereafter.

We have had him in therapy, to deal with things related to my cancer but also just so he can learn to calm down and not act so insane half the time. But it is hard to get a four year old to talk about death. It is hard to get a 40 year old to talk about it, for that matter. It's even harder to get him to talk about something that isn't tangible--I am not dying right now, I am healthy much of the time, I only take to bed or am too nauseous to be functional for a handful of days a month. True, sometimes I fall asleep in the middle of the day on the weekends, or take to bed when my kids do. But a parent does not have to be obviously ill for her children to understand the thing that parents spend time trying to hide from their children.

When my daughter was my son's age, and I had cancer the first time, she coped by talking about it. She gave little preschool chemo tutorials to her friends. She counted and kept track of my radiation treatments. If we kept anything from her, any information about what was happening, she got upset. She only had trouble sleeping at the beginning, when we didn't know what to say to her and doctors and others encouraged us not to tell her (that was really, really terrible advice) and we would say things like "Daddy and I are going to a meeting together" when we were on the way to meet with the surgeon, and she would cross her arms and glare at us and say "You guys don't even work together." So, I just laid it all out for her, and she coped just fine.

It is different with my son. My cancer is different, and his experience is different. He doesn't remember a time when he had a mom who hadn't had cancer. On the one hand, this is normal. On the other, he knows what it means and what it represents. He knows I could die. And who are we to tell him otherwise? This is the child who says to his father, and not to me, for reasons that seem obvious, "Dad, I wish I didn't ever have to die." He hates it when we, his parents, have birthdays, because he sees it as us getting older and that much closer to death. And didn't Dr. Spock say that children can forgive their parents for everything short of dying? What can we say, what magic can we impart to ease his mind?

There is little we can do. I was nauseous and exhausted and had been lying in bed since 5 pm after chemo, but he just couldn't calm down, my husband's words weren't working, so I stumbled into his room and gave him his stuffed animals and told him all that I could tell him: "You are fine. We are all fine. We are all safe in our house, and you are in your cozy bed with your cozy guys and blankets. Nothing is going to happen to you tonight. Not tonight, not right now. We will all wake up in the morning." And he calmed down, but not entirely, so Gabe slept in his room until he awoke and came back to bed with me, and everything was all right for a few cold, moonlit hours, and it was enough, at least for a time.

Friday, November 29, 2013

Day 1,259: Growing Up

At what point do you consider yourself to be an "adult?"

Tina Fey hilariously said that the moment you reach adulthood is a complicated thing but that for her and her friends it mostly boiled down to "men yelling shit from cars."

I laugh, but was I really an adult at 12 years old? No, I don't think so. I think I was an adult before I even technically lost my virginity at 17 (remember when you were a teenager and oral sex "didn't count?" As an adult, you know that's ridiculous and then you adjust your math, so that your sexual coming of age gets lowered to 15). So, that's not what makes a person an adult. Adult situations do not equal adulthood. "Animal house" culture can attest to that.

Is it your first real job? And what is a real job, anyway? I've had jobs since age 11. I worked as a secretary/receptionist/package girl when I was 16. I worked for food money, to help keep the lights on, not just so I could go waste it on some nonsense. I worked at a daycare at age 15 and took care of legions of children for $2.25 an hour. So there's having a career, and some people think that's what makes you grown up, but having jobs that enable you to buy clothes and food and pay bills is also "adult." On the other hand, being a research director at age 29 or traveling the country speaking on panels at age 24 or turning down a job making more money than you had imagined at age 28 is adult as well, especially when you are the youngest person by decades in that situation but you still know how to hold your own.

Is it your first apartment? Well, that depends. How many roommates are involved? Was I an adult at age 22 when I had my own apartment, by myself, because I took a second job as a building manager? Yes, I was. But I had BEEN an adult. For years.

I remember being 15 years old, and it was just my mom and I in the house for good, and one day she asked me if I wanted some coffee and I said yes, and it wasn't drinking the coffee that made me feel like an adult, it was sitting there in silence reading the paper and then talking about stuff that needed doing.

I remember being 16, and walking home from high school and doing my homework. My mom was usually home by 5. So it was 5, then 6, then later. She wasn't home. She hadn't called. I tried her work and she wasn't there. I thought about the stalker I had had earlier that year, some kid we couldn't recognize through his drunken enraged phone calls, the lewd things he said about my body, the fact that he knew what route I took to walk to school; I thought about how the police did nothing but practically roll their eyes about the whole thing. I was worried. There were no cellphones. I envisioned all kinds of horrible things. Eventually she arrived, opening the gate in the back yard as if it were every normal day. I ran outside, she saw me, and she realized what had happened; I could see it in her face. I screamed at her: "I was so worried! You didn't even call! Where the hell where you?" And she sheepishly apologized and explained she was just talking to friends.

I was an adult, right there.

Adulthood is accepting and claiming responsibility. It is being self-sufficient, but even more than that, it is looking out for others. I was an adult in college when I told my roommate that I didn't care who she was sleeping with, but she needed to tell me if she was coming home that night or not, so that I would know she was ok. I was an adult when I saw the look on her face that told me how glad she was that someone gave a shit about her.

I was an adult at age 17, driving my grandfather on errands with my keys swinging from a keychain that read "no condom, no way."

I was an adult when I decided not to apply to the college I really wanted to attend because I knew we couldn't afford it.

I was an adult when I taught my daughter to read and jump rope, when I let her take the video of me riding a bike for the first time at age 35, when I taught my son to throw a spiral and sit on his behind at the dinner table and when I realized he too could read, as long as it was about football or something that interested him for more than a minute.

I was an adult when I took a chance on a guy, and found out he would stick around through all this crap, for almost 11 years now, and counting.

I was an adult, in some ways, since a child, keeping things to myself, handling things, taking care of business, not expecting or desiring help. I was an adult at age 15 when I did perhaps the bravest thing I have ever done. What made me an adult right there was putting aside my own feelings and fears, and saving another person though it was the last thing I wanted to do.

I was in love with a man for years who would tell me that he wished he had known me as a child, because I was just so...OLD, so grown, and what would I have been like in my youth? This man began dating me when I was 17. He still saw me that way, as the girlchild who did things her way and for whom "youth" was more of a timeframe than a lifestyle. We would go to the party together and he would drive me home early, and go back himself, and we would have this conversation that went like this: ok honey, be home before 4 so I don't wonder where you are, and he would say yes baby ok, I will see you soon, and we would later make love and make pancakes and do chores and we were all of what, 21 and 23?

I remember my mother telling me how much she enjoyed being an adult, that she loved to balance the checkbook and pay bills and do the taxes and cook and just be responsible for everyone, that it was a liberating feeling. I thought that was interesting when I was 5.

By the time I was a junior in high school, I agreed with her, because I was doing it...I was grown.

I saved money, bought myself a condo at age 25 and put myself through graduate school--debt free, mind you--all while earning $27k at a nonprofit. I never liked the bar scene. I never liked the dudes who tried to pick me up in various places. I never did things that were too crazy. I figured crazy shit was just bound to happen, so why bring it on myself? Life was interesting enough, just the way it was.

I do not believe that surviving adversity makes you an adult. If that were the case, I would have been a legit adult before I turned 10. I also don't believe that dealing with multiple forms of adversity takes away from the impact of the original trauma. Perhaps it would be a case of "surviving" if you endured sexual abuse just once, but if it happens much more than once, do you lose that moniker? What about having cancer at a young age not once but twice? Does that make you wizened, or just hopeless, that strange woman no one wants to face or acknowledge?

If you are an adult, you realize this: It doesn't matter. What other people think, or say, is immaterial. The question is, what have you done to place yourself and your people in the world, what have you done to alleviate the burden of others?

I have said it here before: I don't understand why people think cancer patients are brave, or inspiring. Some shit happens, and you take care of it. You hope it ends well, but you are old enough to know that might not be the case. You are too grown for magical thinking; you can't remember a time when you had it, actually. The time that has passed since you received this news is just that: the time that has passed. Three and a half years. You are not done with it. You might never be done with it, until you are done, forever and for good. But you cannot live that way, because you owe some normalcy to others. Others who are smaller than you, or younger, or less sure of themselves, others who still rely on you and take comfort in the protection you offer, and even in the notion of you being YOU.

Being an adult means this: putting one foot (or whatever you've got) in front of the other, and walking with your head held high, all the while looking behind you, or underneath you, or in front of you, looking for those who need saving more than you do, because some of those people are right next to you and some you have never met, but they are there, and when you're grown, you can see them everywhere, no matter what has happened, no matter what might happen, no matter what you will never live to see. They are everywhere. And you smile at them, and keep going.

Monday, November 18, 2013

Day 1,248: The Unspoken

I am not in a very good place today. So, if you are looking for an uplifting cancer post (I still don't understand for the life of me why essays about a potentially terminal disease are supposed to be...happy), this probably isn't for you.

I'm sick. I ate some curry yesterday; I had a normal appetite, and there was severe weather with tornadoes touching down close by and time spent hunkering down in the basement with the kids playing fusbol and I just didn't feel like cooking so we ordered in. And then today, I think I have lost two pounds from sickness. This is not food poisoning. This is chemo. I don't know what to eat anymore. I will eat pizza and assume I will get sick and it doesn't happen. Then I eat something that I am normally fine with and get sick as a dog. Most of the time, I am making dinners like baked salmon, cous cous and peas, which is what we will eat tonight. I have always been a person with pretty healthy habits, though I do like my dessert when it's there. So please don't tell me that I have cancer because I have been known to eat pizza. (I hate having to say things like that over and over again, but I am just plain tired of people constantly implying that cancer is not a disease at all, it is just the culmination of all the bad habits we cancer patients supposedly had in the past. I didn't have them, people. A lot of us didn't. This is cell biology gone wrong). And I am extremely busy at work, and with my kids, and I'm just...tired. I actually decided to take a precious half day off this afternoon because of all this; given that I just started a new job on Sept. 1, I don't have many of these days at my disposal.

So feeling sick is getting me down. Not having my period this month is getting me down. But I am also jut having a few days in which I'm feeling down because I am dealing with a heavy load of bullshit, whether I am supposed to admit to that or not. Last night while Gabe was giving the kids a bath, I was downstairs listening to music and I started "crying" which is not normal-person crying but Katy Jacob-crying, so there were a few tears in my eyes that couldn't figure out how to fall. After putting the kids to bed, I told him why I was upset:

"I'm probably just not going to live very long, am I?"

And of course, he didn't know what to say.

This sentence that I said to my husband, who just kissed my hand and sat there looking silently crestfallen, falls in a long line of sentences that are supposed to be unspoken. I have uttered many of these here and out loud in my real corporeal life. They include the following:

No, I don't want you to have a vasectomy. You are a young man. If I die, I want you to be able to have kids with someone else.

I don't believe this was part of any plan. I just think that shit happens, all kinds of shit.

No, I really don't have any of the risk factors, lifestyle, genetic or otherwise, that are known for this disease. And yet I got it anyway. Twice.

The statistics that are thrown out there are lies. Stage 1 breast cancer might be known for 95% survival rates, but that is not true for triple negative disease, and that statistic is a 5 year survival rate only. As many as a third of women with early stage disease will develop metastatic disease, and all of those women will have incurable cancer. I could be one of them. Easily.

Being thin and extremely active and healthy in all other aspects of my life and doing a shit ton of toxic chemo and radiation did not kill my cancer. Neither did acupuncture.

Being young, especially under age 35 at first diagnosis, makes my prognosis much more grim. Not being BRCA+ is probably another negative in my situation.

This is not about being heroic or being a bad ass. This is about survival on the most basic level.

It's very hard to be in this situation with young children. Other people long for the past when their kids were smaller. I long for the future, for choosing high schools and colleges, and weddings and first apartments and even grandchildren, but I often imagine these things without myself being in the picture. I just think of the future they will have, with or without me. And it's hard. I also imagine the other partner or partners I hope my husband would have, and I try not to think about the effect my premature death would have on my mother.

This is not my first flirtation with death. It is my fifth. I have been close to death five times. It is, as they say...enough.

This is also not my first flirtation with physical disability. I have had a lot of bad things happen to my body. It's not as if you are only given one trial. Some people are tried all their lives. There is no reason why I would not be one of those people, and there is no reason you deserve to NOT be one of those people any more than I do.

I've got a gun at my head, all the time. The first question is whether the man holding it (I always imagine that it's a man) will pull the trigger. The second question is, if he does, how long will it take to die?

I hate putting disclaimers in my blog, like the following, but I feel some obligation to do so, because otherwise people will shun me. It's just a fact:

None of this means that I am a depressed person sitting here thinking dire thoughts. Most of the time I am watching football, working, telling my kids to get shit done, chatting with friends, cooking, going to the gym, not thinking about cancer at all. But these unspoken words and sentences can be like an albatross around the cancer patient's neck. No one wants to hear it, but it's hard to just keep it all in your head. So you just need to cut off the albatross' legs and listen to it scream.

That's it. That's all I've got today. Wounded birds and unspoken thoughts, both being released into the cloud.

Friday, November 8, 2013

Day 1,238: Living with Dying

I've noticed on various social media sites that people have been writing about what they are thankful for this month. I'm thankful for many things, but I am especially thankful for all of the people who don't tell me how I should behave, who don't question the "decisions" I've made through two bouts of cancer under age 40, who don't make me feel like this whole mess is all my fault.

I say this because there are a lot of people out there like this, who say unfeeling things, terrible things really, out of what I can only assume is their own fear. People tell you that you should have done things differently, that you could have avoided cancer if you had been skinnier (size 0, anyone?), if you ate better (better than home cooked meals every day?), if you exercised more (more than 2-3 hours every day?), if you were happier, funnier, if you danced more, if you went to church, if you had never had a drink or a smoke or sex with someone you weren't married to, if you had only been different from yourself, then cancer would have left you alone. They tell you that chemo is stupid, that the power of your mind will erase your cancer, that kale will save you, that you have the ability to will your cells into cooperation. They say these things because of their own fear, their fear of YOU, and what you represent. You represent the thing that could happen to them, no matter what they do. You represent the person who is healthy, yet not healthy. The person who looks younger than she is by years, though her body has been made older than she is by more years than that. You represent the person who was supposed to win, and lost.

So I am thankful for all the people who have let me be myself, and who don't try to erase the difficult parts of what that means. Because what we all do--all of those of us who have had something like cancer, or a terrible accident, befall us, is this: we live with dying.

We live with not just the thought of it, the esoteric sense of the fact that none of us is getting out of here alive, but with the reality of it.

We go to chemo, and we sit in chairs next to women who are dying of the same disease we have had, that disease that has refused to leave some of us alone, for years--since 2006 probably, that neither chemo nor radiation nor surgery nor exercise nor awesomeness could cure. And we know that we can't use the specter of those skeletal women, who are cold, and alone, and resigned, and amazing, to make this be about us. The fact of those women dying is not about me and what I fear for myself. They are entitled to their own dying, as it is, on their own terms. But this is what we do. We make friends with women who have the same disease we have, and some of those women die. They do not die beautifully or admirably. They die, and it's ugly and painful and it's not fair and they leave legions of people reeling in their wake. And we live knowing that might be us--almost expecting that it will be, actually. I try to look into my future, imagine my old age, and I cannot do it. I think about my surgeon looking happily at my reconstructed "breast," and telling me it looks wonderful, and that when I'm 80 I will have one perky breast and one that sags halfway down my chest. I see the look in her eyes when she says "when you're 80" and I know she says that to comfort me because we both know there's a high chance that will never come to pass. I live with this every day, all the time, this knowledge that my exit might be premature. I also live with the knowledge of what might come to pass before that exit is made--and it's not pretty, folks.

This acknowledgment does not mean I am depressed, or negative, or that I have the wrong attitude. I have the right attitude for the circumstances. I know how to live with the notion of dying, and I know how not to avoid people who are dying, even if they remind me of the self I hope I never have to witness. I could take myself out of painful circumstances, I could avoid getting to know terminally ill women with breast cancer, but then what would that prove? Would I want people to do that to me, just because I was going to die and it was hard for them to accept it? No, I would not. It bothers me that this has happened to me already--I have lost friends, been isolated from people, learned to focus on my little family and my close inner circle of friends, because people live in fear of me and what I represent. They have left me, ignored me, passed me by. I do not dwell on it, but I know better than to become one of those people myself.

It might be hard to have body parts amputated and to poison yourself, but it is harder still to live with what those things represent. And so it is that as we live with the certainty of death, and the possibility of death coming too soon, there are those of us who say this: It's coming, and it might be just around the corner for all I know, but it's not here yet. I'm still here, still alive, still young, still me, and I'm not dead yet. Not yet.

Monday, November 4, 2013

Day 1,234: Co-Pilot

I haven't been here in a while. I haven't had much to say about cancer. I haven't felt much about cancer either. I'm just living my life, and my life is very busy with a new job and little kids and then, the chemo and everything. I don't think about cancer that much, which might surprise you. I do think about life a lot though, and cancer might have something to do with that pondering, but it might not--that might just be Katy being Katy like she's always been since a child.

I've been thinking about relationships, and marriage, recently. I wrote a really short blog post for my 9 year anniversary, but that's not what I mean.

I've been thinking about how happy I am not to be dating, since I'm not sure I was ever very good at it, even though I had a lot of practice from about age 12 on, but also since I'm happy to be in this stable place in my life.

I've been thinking about what people think they want in a partner, what they think they don't want, and what they think they need and don't need.

No one needs to get married. No one needs one partner. It's a choice, not a requirement. Lots of people lead happy lives by themselves or with multiple partners or what have you. I never had a vision of myself being married; in fact, when I used to think about myself having kids, I always envisioned myself as a single mom. This life I lead takes me by surprise, and it takes my husband by surprise too, I'm sure. We both had grown-people problems as teenagers, we both grew up in strange circumstances (him much more than me), we both had suffered in our youth and faced the notion that life was just hard before anyone had to tell us.

We both probably had our ideas about what we WANTED in a person, what we didn't want, etc. There are so many qualities in people that you can enjoy and desire and be repelled by and despise. So much of that is immaterial. If you do make the decision to lock it down with one person, what does that mean? Who should it be, who should you be, how should you both behave? What are you supposed to give to each other?

Many people have this belief that going through something like cancer makes you stronger as a couple. I've been pretty clear that I don't think that is necessarily the case. Cancer has made me less patient, less tolerant of bullshit, and it has brought us to some very dark places that neither of us ever wanted to visit. But on the other hand, cancer has in some ways shown me the bare-bones version of what a marriage IS.

Forget what you want. Forget what you think you need. If you are in a lifelong or semi-permanent or committed relationship with another person, what you should be for that person is this:

You should be a co-pilot, a partner in crime, a second--a lieutenant.

You should be able to step in and do what needs to be done even when it's the last thing you want to do. You should be the one driving the getaway car, even if you're bound to get caught. You should be the one who remembers things, things as they used to be or things that happened when you were younger or things that never happened but that you wish happened, like knowing each other since you were children, because wouldn't that be something?

You should be this one (from July, 2010):

I have just spent the last hour with my husband, having my little buzz shaved off for good. I really liked it for the two weeks that I had it, more than I expected. I felt comfortable going out in public with it. But I couldn't stand how it was coming out constantly, even while I was brushing my teeth, even while I was wearing a scarf. My head was hurting all the time with the little hairs pulling, making it hard to sleep. I was starting to look like I had mange. So Gabe got his new clipper set out and went to work. I just looked more ridiculously mangy and we both agreed that wasn't good. So then he got out the Barbasol and safety razor and started a long slow process of shaving my head smooth. I started to cry those dry tears and I'll admit I'm doing it even as I write. What kind of fucking medicine makes it so that you can't even really cry? Gabe is more of a crier than me by a large magnitude, so that started him off as well. There we were in the bathroom, both crying, hair all over the floor, my hair all over his shirt. He said he never had a father to teach him to do this right (to which I wanted to say, do fathers and sons often shave each others' heads? but you know, I don't have an answer, being a girl), and even if he had, he never in a million years could have pictured himself doing this with me.

There's the whole in sickness and in health part of your marriage vows. But then there's standing in your basement bathroom with your wife wrapped in a towel, sitting on a stool, while you shave off all of what's left of what used to be her really pretty hair and then you take the expensive after shave that your mother in law gave you for christmas years ago and rub it all over her head, feeling guilty that you gave her razor burn. And you tell her that she looks sexy, though she knows that's a lie.

And, on the flip side, you should be the one who recognizes this:

But there is something about (the experience of Gabe shaving my head) that sticks with me, thinking about it now. I interpreted Gabe's comment about his father, or lack thereof, as being probably deeper than it was. He wasn't talking about some life lesson he never learned. I think he was saying that he had never learned how to use men's clippers before; that should have been obvious since he was reading the instruction manual before he attempted a hack job on his own hair. I think he was saying, hey, I don't know what I'm doing, I've never used these before, because no one ever showed me how. Once the attempt to clip my buzz failed, he actually gave himself a very nice haircut.

I'm thinking about the days when Gabe doesn't use the electric razor on his face and goes for the Bic. It's often not a pretty sight. There are cuts, bloody kleenex on his face, razor burn that lasts for days. Three days ago he shaved my entire head--huge heaps of short thick hair--with a disposable razor and a 79 cent can of shaving cream. And I had not one nick, not one spot of blood. My razor burn was gone within an hour.

It doesn't impress me that he shaved my head, that we cried, that it was hard. The image I'm keeping is of me sitting still, watching the whole thing in the mirror. What I couldn't see, the part that really means something to me, is his perfectly steady hand.

You might want a lot of things, you might think there are needs that people can fulfill for you, but you would be wrong. Cancer has taught me a few things, I suppose. What we all could use is a person who can do hard things gently. We could all use a co-pilot, a person who tries to save you both when you are unable to save yourself, because he volunteered, because that's what the job required, because he wanted to play a role in how the story ended, because what you do together is life and death and all the things in between.

Monday, October 21, 2013

Day 1,218: ChemoDrain

Chemo sucks.

It sucks when your normal chemo nurse isn't there, and three nurses can't figure out how to stick an IV in your very healthy veins, and when they finally succeed, you gush blood all over the floor and there are jokes about you being a "geiser" and you have to use rubbing alcohol to clean the ring your husband gave to you years ago for your birthday, which is engraved with "as you wish" from the Princess Bride.

It sucks to be so exhausted that you can't stay awake to put your kids to bed.

It sucks that you still exercise 2-3 hours a day and that doesn't seem to help with the exhaustion nor the cancer, for that matter.

It sucks to start to get your period on schedule and then have it stop abruptly when the poison enters your veins, so now you feel overweight and depressed and just PISSED that you will be in that menopause again with the incessant hot flashes and sexual dysfunction and all of this is happening 10 or 15 years too early.

It sucks that the chances of chemo working are significantly less than the chances of it not working.

That's how I'm feeling today--I'm feeling that this is hard, and stupid and surreal and just bullshit.

I know that many people who have not had cancer, and even some who have, feel that the only appropriate response is to talk about being a warrior and kicking cancer's ass and telling chemo who's boss. But come on--that makes no sense. Chemo is a drug or usually a combination of extraordinarily toxic drugs, it is part of treatment for a disease that kills lots of people. Diseases require treatment and often medication. This is true of diabetes, heart disease, epilepsy, MS, you name it. Why are we the only ones with this bizarre and illogical warrior badge? It just doesn't fit. It especially doesn't fit someone in my situation. While most people have been very supportive of me during this recurrence, others seem to feel almost...disappointed, annoyed, even angry that I am doing this AGAIN. I have heard this from every woman I know who has had a breast cancer recurrence--some folks seem to feel (prodded along, I'm sure, by messages in the media that make breast cancer seem like a learning experience or a rite of passage, some temporary bump in the road) that I should have been DONE with this already--didn't I get that memo? No matter how tiring it is for others, it doesn't compare to how tiring this all is for me. It's tiring because I'm ready to just walk away from all of it, but it's also tiring because...I'm tired.

Chemo gives me strange dreams; that is, it gives me strange dreams during the few hours that it allows me to sleep. For instance, after falling asleep around 8:30 last night, and then sleeping fitfully for several hours before waking at 3 AM for good, I had a dream that I was going to do the same kind of "chemo" as some NFL player...even though I didn't have the type of cancer he had and I didn't need it. His torso was covered in something that looked like nails, and the "chemo" wasn't chemo at all, it was some device that clamped like a vise to his torso and SLAM, punched in, and it was excruciating, and I know that because I had to do it for no reason and no benefit, and that dream doesn't even seem strange, come to think of it.

Chemo means that my kids know things they shouldn't, like that there is a reason their dad takes them out a few Wednesdays or Thursdays a month, because I don't want them to see me take to bed at 6 pm. My four and a half year old son asks casually at the dinner table when I have to do chemo next, and he still associates the treatment with my "breast," which he touches or kisses every once in a while "to make it better." My daughter has tantrums sometimes, which is not like her, and I blame myself, even if I shouldn't. We take them to therapy, but I'm not convinced that in this sense, being able to talk about things is the issue--it's having to witness things, having to understand things, that is the problem. These kids have had a mom with cancer almost their entire lives and I have no idea what that means for them or what that has done to them. I have a son who asks so often, what happens when we die? What were we before we were born? When we're gone, mom, what's left? No, you don't understand me...what's LEFT? My kids hear about heaven from their friends and I'm glad that Augie at least seems to think it might be real, though Lenny definitely doubts it, and I am the last person who could give them that comfort when I don't have that comfort for myself in my own head.

I know that cancer has not changed me as a mother, even though other people think that it should have done so. I have been unfriended on Facebook over my assertion that cancer does not turn you into some uber-mother and over my clear disregard for any notion of guilt that I am supposed to feel over having cancer when my kids were small. I am not a superhero, nor do my kids expect me to be one. I am still the hard-ass, I still play with them only sporadically and if it's something that I want to play (it was me, after all, who taught Augie to throw a perfect spiral; I like to play baseball with them, or gin, or something else that I would like to do anyway if they were adults); I still yell sometimes, I still get pissed when everything's a mess; I don't, God help me, do crafts; they have to eat whatever I cook; I am not as affectionate as my husband. I know that they love me and they like me and I know they wish I didn't have cancer and that I didn't have to do chemo. Perhaps they would wish for more normal childhoods if they knew any different, but on the other hand, their childhoods have been very normal in retrospect, and some suffering happening to a family does not preclude a normal upbringing. At least cancer has forced me to create some kind of legacy for my kids through this medium; I have documented my love for them in ways I could not do with my actual, not my figurative, voice.

Life is hard and it always has been; this body has been tried and tried since it was a tiny little girl and that is just the way it is for me. It might be hard having cancer, it might suck to go through 10 months of chemotherapy in your 30s, and I will always be one of those moms who had cancer for years, no matter whether I make it out of this mess alive or not, but there is this:

At least it's me--at least it's happening to me, and not to them. The fact of their physical normalcy trumps all of this, and I hope they will always have that, even if that hope is based on the stuff of daydreams. It is that thought that helps me keep walking, as if I am walking away from cancer, at the same time that I am following those I love into the future I hope I have a chance to witness.

Friday, October 18, 2013

Day 1,215: Baby Elephant Story #2

Sometimes, a baby elephant grows into a mama elephant. Right after receiving the following essay from Lulu Luke, she discovered that her fourth TNBC cancer had metastasized to her lungs. As you all know, metastatic breast cancer is incurable. Lulu is currently involved in a clinical trial for a new chemo drug that will hopefully provide benefits for Stage IV TNBC; many treatments for advanced breast cancer focus on estrogen positive cancers. Here is Lulu's story. The lines in italics are the questions that I asked her; with the exception of light editing, these are her words verbatim.

Lulu Luke

Tell me about yourself.

My name is Lynda Luke AKA Lulu. I'm a 45 year old mum to Hannah, 22, and Jamie, 19. Hannah has special needs and a mental health disorder. I work as a nurse. I actually work as a breast care nurse in screening and genetics. I started this job after my second diagnosis. I was first diagnosed in April 2006, age 37 with invasive ductal, grade 1, stage 1, breast cancer after finding a lump in my right breast. Treatment was lumpectomy and sentinel node biopsy, followed by further excision, radiotherapy and tamoxifen.

In may 2009, following my routine annual follow up mammogram, I was diagnosed with grade 3, stage Triple Neg ductal BC in my left breast. Treatment was lumpectomy and sentinel node biopsy, chemotherapy: Epirubicin x4 and CMF x4, and radiation. I had to stop tamoxifen during chemo but restarted it after this was finished.

In October, 2009, I had bloods taken for genetic testing and results came back in January 2010 that i was positive for BRCA2. In September 2010, I had a full hysterectomy with removal of my ovaries to minimise risk of ovarian cancer.

Tell me about your recent recurrence. You can tell me how you found out, how you felt, what you did, what the process entailed, or any combination of things that seem most relevant to you..

In August 2011 (a month after my 43rd birthday) after a delay of three months with my MRI scan booking being forgotten, I was diagnosed with a recurrence of grade 3 TNBC in the interpectoral lymph nodes between my pectoral muscles in the chest wall. I had a surgical excision and level 2 ANC, followed by carboplatin and taxotere chemo x6 and radiation to upper left chest wall. Both interpectoral nodes were positive; all axillary nodes were still negative. Path showed muscle involvement. Having had BC twice already plus a scare after chemo, I was actually quite calm about this diagnosis. I suppose I kinda was expecting it, as I had noticed the area getting slightly bigger. It was the same place as a scare at the end of 2009 but the biopsy I had at the time came back as fat necrosis, although the radiologist was pretty sure it was malignant at the time. So who knows?

Because of being a BRCA carrier I had an annual Mammogram and 6 months later an annual MRI. The mammo I had in November 2010 was normal apart from a cyst I had drained, so I wasn't that worried about this area, but by the time of MRI I noticed it was a little more lumpy so I made sure that bit would show up on the MRI.

When I was recalled I wasn't overly concerned at the start. But after clarifying what they had seen on the MRI the day before my ultrasound review, I went into melt down and panicked, cried, worried about the future for a couple of hours and got it out of my system. So when I went in and they wanted to biopsy it and they thought it was cancer, I was ok about it all.

Tell me what is different for you with this recurrence.

For me the second cancer was the worst. It was the one I feared the most, the one I cried about the most. The worry from the first one was cancer coming back so when I got no 2 that made it a reality. By the time no 3 came along I was like, what have I gotta do this time to get rid of the bugger. The biggest issue I had as always was telling my parents, especially my mum who had BC 15 months before my first diagnosis. She broke down after I told her about the first one, was hysterical after the second one, as I hadn't given any warning I was being investigated as I didn't want to worry her if it was nothing. On the day I had the biopsy for no 3, she and my dad went on holiday in Ireland and I was worried about her reaction if I delayed telling them until they were home, so I phoned and said the doctors were worried and I'd need a biopsy. I'd actually had the biopsy and fine needle aspiration and knew the results had shown a malignancy, but I thought that was enough info to keep them informed without spoiling their holiday completely.

Tell me how you feel about the notion of being a cancer survivor.

Personally, I hate this term. I'll only know I'm a survivor of BC when I die of something completely unrelated. In the meantime I live with BC and beyond BC. I live my life, I love my life and I don't want BC to take over my life even if does eventually take my life. However I am a self confessed BC bore. I have read lots about it. I work with BC patients, I have BC friends. But BC doesn't scare me. It doesn't stop me from doing what I want to do. It may even have encouraged me to do things I wanted and was a little afraid to do, to go places and experience things I might never have done.

I'm not one of those I'll do anything to stay alive type people. If I want a beer I'll have one, if I want a cake I'll have one. I don't deprive myself of things I like just so I can live a couple of extra months or years. I would rather live my life even if it's shorter than exist just to be on earth longer.

Tell me a little bit about how others have reacted to the news.

As I said before, my mum has been the hardest to tell. When I first found out I had cancer it was less than a year since she had finished treatment and she had been having more investigations as they were worried she had mets in her liver. Thankfully, she didn't have liver mets. When I told her on the day I was diagnosed I had BC too, she crumpled in front of me. When I got the second cancer after the first day of being in a blind panic, I'd convinced myself it was benign so again I didn't want to worry her over nothing. It wasn't benign; it was very malignant and it was my dad's birthday and when I told mum she actually was screaming... Totally screeching..... Like a banshee.... totally hysterical! She ran through the house to her bedroom and slammed the door and sat behind it crying. She was so affected by it.

When I got cancer no 3, I didn't see her reaction because she was away, but I think because I'd warned her she was actually much calmer; she was still very anxious but not hysterical this time.

Some of my friends, even my BC friends who work in a similar field, were saying it's maybe a mistake and it will be ok. I felt a little disappointed in them that they didn't just say 'sorry to hear that' or give me hugs or something similar. That whole "oh it must be wrong" makes you feel kinda not believed. Also all that brave, inspirational stuff gets spouted out yet again; I am not brave or inspirational, just doing what I have to do to get through the whole thing.

Tell me what you think it means to have cancer and what words you would like to use to define this experience.

Having cancer is rubbish. Having cancer treatment it really rubbish. Keeping on getting cancer and cancer treatment is really really really rubbish! However, along the way i have made some of the strongest friendships of my life. I have discovered who my friends really are and the strengths and weaknesses in those around me. It has led me to a field of nursing I hadn't discovered before and opened up doors to experiences I'd never have considered. I wish I never had it but I love all the things I've gained.

Tell me one or two specific anecdotes—involving people in your life, medical experiences, thoughts or dreams you have had, conversations with others, or things you have noticed in the world—that typify what this cancer recurrence means to you.

This cancer recurrence doesn't mean anything different to the previous two. Nothing special happened this time that may or may not have happened before. I just like people to know that have a recurrence that there is life after it. I feel lucky.... I know I've had BC 3 times but I was first diagnosed in 2006. I have lost so many friends who didn't make it. They never ever didn't have cancer during treatment; it progressed and took their lives leaving their kids without mothers. It makes me so sad still that my lovely friends Hazel, Michelle, Tina, Rhian aren't here. Some other lovely friends never got the chance to be mums like Sharon, Sarah, Gail and Karen. And yet more lovely girls are fighting a fight that they know they will never win like Emma, Angie, Sue, jennie, Lorna and Lynn. We go for lunch, we laugh, we cry, we drink pink fizz and cocktails and we have as much fun as we can because one day we wont be able to do that any more.

A recurrence isn't mets. A recurrence wont kill you any sooner than a primary cancer, it won't make you get mets any sooner. It's not the primary or the recurrence that gets you in the end. It's when the cancer goes elsewhere. Maybe one day they will be able to stop it from doing that.

Tell me anything else you’d like me to know.

Im a BRCA 2 carrier and although my mum had Bc at 57 only 15 months before me she is negative for the gene. I got it from my dad. My kids both have a 50:50 chance of inheriting it. If they do, this greatly increases their chances of developing certain types of cancer. I really do hope when they decide to get tested they are negative.

Wednesday, October 16, 2013

Day 1,213: 9 Lives, 9 Years

Today is my nine year wedding anniversary. I thought I had something to say about that, something profound, but I don't really. And neither does Gabe. He had started to write something, and it started like this: Sometimes you just don't know what to say.

Sometimes there are no words to express the sentiment that is in your heart.

Sometimes you do things not because you want to but because love makes you.

While there are many things about breast cancer that I never want to remember and many things about "Pinktober" I wish I never knew ("Get into bed for the cause" - really?!), I want to take this opportunity to mark our anniversary. I want to express gratitude and appreciation not just for the woman I love but also for the people who've helped us along the way. I also want to mark the dark and twisty passages we hoped we'd never revisit but find ourselves visiting now.

He wrote some other stuff that was a little confusing, even to me. He said he was too emotional this time around to be coherent in his thoughts. His final thought was this, though, and it is definitely coherent:

When I met Katy I knew I didn't want to lose her.

Here's to hoping he won't have to, at least not any time soon, and that we have many more sets of 9 years together. And also, next year, when we hit the 10 year point, I figure we might as well just have a big party and get married all over again. I will leave this short post with two thoughts. One is that if you are interested in what I think about Pinktober, outside of what I've said already, listen to this radio interview I did last night or read this story written by a friend I've known a long time.

The final thought is that when I was growing up, my mom called me Kat. I hated that nickname, but maybe it was the right one. I have lived 5 lives in these 38 years, having so far cheated death that many times. I do hope the final four allow me to go out with a bang. And you're welcome to come along for the ride.

Saturday, October 12, 2013

Day 1,209: Baby Elephant Story #1

Soon after I received the news of my cancer recurrence, I made a decision. A few weeks in, I began to realize how different this was the second time around--especially for breast cancer. There is so much hype and publicity over breast cancer, and yet it all has a vague familiarity to it--it is all about fighting and winning, kicking cancer's ass, being a warrior, hope and love and pink. So what happens when you do everything that was asked of you, and you have a few years of normalcy, and then the shit hits the fan again anyway? Well, one thing that happens is that you no longer fit neatly into society's notion of what it means to be a "cancer survivor." The whole concept of surviving gets turned on a dime; you stop thinking about cancerversaries and being done with chemo and being afraid that cancer might return and suddenly, cancer is a thing that you have to deal with on a long term basis. You start to think that cancer might never leave you alone. People treat you differently than they did the first time--there is more fear and sadness, but also more resignation and disbelief. Because of this, I decided that I would ask women who had had local recurrences (mets is a whole other story--and deserving of its own storytelling series) to send me their stories, under the guise of the Baby Elephant Project.

I named it this because I feel that we are the elephant in the room, though we are the baby elephant in comparison to the mama elephant of mets. We are the thing other survivors fear, we are the reality it is hard for our loved ones to accept. We are the ones who tried, who really, really tried, to beat cancer--but we didn't necessarily "win." I had plans to do more with this, and that is still on the agenda. Would it be a book, or a separate blog? I had grand ideas--and then reality hit me, and I was starting a new job based out of state at the same time that I was starting 6 months of chemo and my kids were starting school. One of the women who sent in some responses found out she had mets. I haven't found time to connect with everyone. This project is far from over. Today I am making a contribution to breast cancer awareness month by publishing the first in the Baby Elephant Series. Please read the story of Sharon Greene, a 4 time survivor of triple negative breast cancer. I fixed a few typos and did some formatting and light editing, but otherwise, this story is hers and hers alone, in her voice, in the way she chose to tell it in response to a handful of very simple questions that I asked of her. Thanks, Baby (elephant).

Sharon Greene

I have had triple negative breast cancer 4 times in 23 years. It has now been 25 years since my first diagnosis. Although I had BRCA testing in the 90's, my particular mutation wasn't one they were looking for. It wasn't until I was re-tested in 2011 after cancer 4 that they found the last 4 segments of my BRCA1 gene were blank or just weren't there. Since learning of my BRCA1 status, I've had my ovaries and tubes removed to lower my risks of ovarian cancer.

I read a study recently about long term survival in breast cancer patients. Most studies don't go beyond the 10 year mark. This study took a look at survival rates from 1988, the year of my first diagnosis, to the present, and only 15 percent of us are still alive. Now this study wasn't implying that all these people died of cancer. I imagine there were a number of elderly women in there who died of old age as they would have normally, even without the breast cancer. Still 15 percent survival to the 25 year mark are not the kind of stats that the pink ribbon crowd want you to see. It also made me wonder at my own fortune for being one of the 15 percent instead of one of the 85 percent.

Even though I have a family history of breast, ovarian, and 2 different types of colon cancer and even though I am BRCA1 positive with 4 triple negative breast cancers behind me, my cancers were for the most part caught relatively early. I found the first cancer myself and had I been more on the ball, I would have caught the others myself too. Instead cancers 2 – 4 were all mammogram finds. Maybe I am a poster child for the pink ribbon's early detection program after all.

The first cancer at 29 came as a complete surprise to me. Although my mother had battled breast and ovarian cancer in the decade prior to my diagnosis, she had been in her 50's both times while I was so much younger. In the pre-internet days of 1988, I brought home every library book on breast cancer I could find. It was described as a disease of older women. I did not meet or hear of any other women my own age with breast cancer. I felt isolated and very alone. Although I had a lumpectomy and not a mastectomy, I had just broken up with my long time boyfriend and couldn't imagine re-entering the dating world with half a breast. How do you casually slide that little tidbit in the conversation? I had recently graduated from law school, completed a grueling year of articles (internship for lawyers in Canada), and was now unemployed. I didn't know how I was going to explain this gap in my resume without having to tell the cancer story. I did not want to tell anyone the cancer story. I was embarrassed and ashamed to have this old lady's disease and this disfigured body. Along with the lumpectomy, they removed each and every lymph node under my left armpit. All were clear. This was followed by 6 weeks of radiation treatment that left me tired and burned. Once treatment was over, I dated a guy my age I found in a cancer support group. He was missing a testicle, I was missing half a breast. It should have been a match made in heaven. It wasn't, but he helped to make the transition back to dating again. I found employment and for the next 5 years, life went back to a kind of normalcy.

At about the 4.5 year mark, one of my mother's cancers metastasized into her liver and was incurable. She was given 6-9 months to live. About 6 weeks later, she was hospitalized for the last time. I spent the next 17 days at her bedside, watching her deteriorate day by day, but still refusing to die. I stepped out for about an hour, and she passed away when I was gone. I was devastated as we had been very close. I was an only child, estranged from my father, and felt like an orphan at 33.

I had been slowly building up a solitary drinking pattern since my first breast cancer. It accelerated after my mother's death to the point where my employers staged an intervention and sent me off to a 28 day treatment program. There I met a man trying to kick his cocaine habit. When we both graduated from treatment, we began dating. We became close early on when I broke the ankle on my driving foot and had trouble navigating around on crutches. He came over one night and never left, unofficially moving in.

I was starting to get my life back on track and about an hour before my 5th year mammogram, I was told about a new position at work. I remember leaving the meeting, saying I'd be back in an hour, as I just had a routine mammogram to attend.

There was nothing routine about this mammogram. They took pictures. Then they took more pictures. Then more and more people started entering the room to look at the pictures. A doctor came along and did a breast exam and pointed out a large mass in the same place the first cancer had been. It was pretty clear to me that the cancer was back. It was surprising to me that I had missed a lump so big but then again, it did not show up at all on the mammogram taken 6 months earlier.

Things seemed to move very fast this time around. I was told mastectomy was the only treatment option as you couldn't radiate the same breast twice. I was sent to a plastic surgeon and looked at horrifying pictures of reconstruction (plastic surgery has come a long way in 20 years). I finally decided on having my back muscle moved to form a breast with an implant added for size. At this particular time, silicone implants were banned, even for breast cancer patients. The only implants available were saline implants that rippled and created a breast shaped like a flattened pancake. It was extremely ugly. Even doctors and nurses at the Cancer Clinic suggested I go back and have it somehow fixed. The plastic surgeon seemed to think he had done a fine job and there was nothing to fix.

This had been a rollercoaster 6 month period with my mother's death in November, a stint in rehab in April, a broken ankle in May, and a cancer diagnosis in June at my 5 year "cure" appointment.

I was still mourning my mother and trying to deal with life as a newly sober person. I was in a fragile emotional state and did not want to lose my breast at 34. I cried all the way to the hospital, still wearing the cast from my broken ankle. I had the surgery with the immediate reconstruction followed by 9 months of chemotherapy. I went into the hospital depressed and came out even lower. I have been told that I continually cried out for my mother the night of my mastectomy.

Although people from work were supportive, I felt very much alone. The boyfriend was my sole day to day caregiver. The boyfriend soon showed his true colors when I got a call from the credit card company advising that my card had been used to buy hundreds of dollars worth of cigarettes during my hospitalization. As my credit card was still in my purse, it was clear the boyfriend did it. I was at such an emotionally low point in my life that I let him stay so I could have someone to "take care of me". I later learned that I was showing all the signs of severe clinical depression but it went untreated.

The chemotherapy I had caused severe mouth sores and some nausea but I didn't lose my hair. I was told that the chemo may push me into early menopause but my periods came back shortly after the treatment stopped. I was grateful that I had seemingly escaped this long term side effect. I was told by the oncologist not to get pregnant for 5 years after chemo as that might bring the cancer back. When I questioned why I had to wait 5 years when both cancers were hormone negative, I was told that my baby might not have a mommy as I might be dead. More depression followed this announcement.

I was also told that this was not a recurrence but a new primary breast cancer. They knew this as my first cancer type was medullary and the second was the more usual adenocarcinoma. The fact that both cancers were in the same spot was put down to mere coincidence.

Meanwhile on the home front, it became clear that the boyfriend had relapsed into his cocaine addiction. I remained sober for the first 2 months after the surgery and then finally broke down after my first chemo and asked to try some cocaine so I could see what the big deal was all about. I tried it and I liked it. Cocaine became a regular part of my world until the 9 months of chemo were over. At some point very early on I knew I was engaged in self destructive behavior but I really didn't care if I lived or died. Part of me wanted to die to be with my mother. Another part of me obviously wanted to live as I kept going to my chemotherapy appointments. Once it became clear that I was going to live, I kicked out the boyfriend, voluntarily went to a women's only drug treatment center, and started seeing a psychiatrist to grieve my losses. I took antidepressants to tackle my depression and feelings of anxiety. I have now been sober for 19 years and am grateful to all those who assisted me along the way. This period of my life still causes me great shame even 20 years after the fact. I think of others who did everything in their power to keep their cancer from coming back, from changing their whole diet to taking all kinds of alternative treatments, doing anything to stay alive. I on the other hand was extremely careless about my health, not even caring if the cancer took over or not. I feel guilty for all those people who died while doing everything right while I lived while doing everything wrong. When people compliment me for being so brave and courageous in fighting cancer 4 times, I just have to flashback to cancer 2 to see how utterly unheroic I really was.

I didn't stay cancer free for long. About a year after I finished chemotherapy, a mammogram found a tiny spot in the remaining right breast. It was too small to be felt and the lumpectomy had to be done after a wire was inserted in the spot shown by the mammogram. Once again, all my lymph nodes were removed and all were clear. This was again followed up by 6 weeks of radiation. When you have your lymph nodes removed on one side, you are not supposed to have needles or blood pressure cuffs on that arm for fear of lymphedema. When lymph nodes are removed from both sides, all those warnings go out the window. They don't tell you to protect both arms and use some other body part for these medical procedures. Instead you are told to use whichever arm you want and it will all be okay. Luckily for me, all was okay and I never had any symptoms of lymphedema.

With cancer 3, the people at my workplace were much less supportive than they had been before. I had barely returned to work after cancer 2 and now I was leaving again for cancer 3. Even medical personnel were taken aback when I said that it was my third breast cancer, not my first. Their reactions were a mix of disbelief, awe, and horror that someone at my age could be going through this for the third time. I had the same reaction from other breast cancer patients I met while waiting for radiation. Hearing that this was my second time having radiation and that I had a mastectomy 5 years after my first cancer, the reactions were mostly along the lines of "Wow! What a fighter!" while clutching their gowns closer to themselves and shrinking away slightly, as if they too might catch cancer again by sitting too close to me. For people facing their first cancer, I was an unpleasant reminder that it could reoccur and later spread to the other breast. By this time, the pink ribbon message was everywhere with its promises that early detection equaled cure. People like me just didn't fit in this rosy view of breast cancer, where no one dies or gets sick again once they have "survived" for 5 years and been "cured".

This time, I did have emotional support from the man who was soon to be my husband. I didn't have an emotional breakdown this time. We in fact bought a puppy once the surgery was finished, to symbolize a new long life together. The lumpectomy left a small scar but was otherwise barely noticeable. The oncologist this time said that the 5 year ban on pregnancy was no longer being followed and since I was now 36, I had better start moving on that front as I wasn't getting any younger.

We were married and tried getting pregnant the natural way without success. We were soon referred to a fertility clinic as I was concerned the chemotherapy had made me infertile. The doctors couldn't find anything wrong with me but determined that my husband's sperm quality was poor. They said our only chance of getting pregnant was by a special kind of IVF where they would pick out the very best sperm and directly implant it into my eggs. The concern arose as to what to do about giving me high doses of hormones when I had 3 bouts of breast cancer in the last 7 years. They consulted with the Cancer Clinic who basically said they had no data on someone like me using IVF. They were concerned about the hormones but could not say for certain that this treatment would lead to further cancer. We took this as a yes to go ahead with the fertility treatments.

Before we started, I was told that a woman my age was expected to produce between 12 - 18 eggs. The first time around I produced 2. The pregnancies didn't take. The second time, I produced one egg and once again didn't get pregnant. It seemed that chemotherapy did indeed impair my fertility. Although I did resume my periods after chemo, I definitely was in menopause by 45, some 10 years earlier than my mother. I am assuming from the early menopause that by the time we tried IVF, my body and my egg supply were not comparable to others my age. They were all physiologically older than my chronological age.

We next tried the adoption route. We had to do an extensive home study covering all areas of our lives, including medical history. The social worker was very concerned about my medical history and required a doctor's letter basically guaranteeing I wouldn't get cancer again. Although no doctor can make such a guarantee, my doctor came very close to promising I'd never get cancer again. Somehow we were approved for adoption and adopted a boy and then 16 months later, a girl, both from Chicago. For reasons unrelated to breast cancer, my marriage imploded when the children were 22 months and 6 months old. I have been a single mother since then. My children are now 12 and 13 years old.

For 16 years, it seemed as if the doctor's letter had indeed guaranteed my health as I stayed cancer free. In April, 2011 I went for a routine mammogram. All seemed well and I was sent on my way. 2 days later, I received a call to come in the next day for a diagnostic mammogram. I knew this wasn't routine and the old familiar dread took over. I had pictures taken and retaken until I finally said I wanted to speak to the radiologist. He came in, not once looking me in the eye, literally staring at his feet through the whole conversation. I said I'd had breast cancer 3 times before and I wanted to know if it was back again. He said there was a strong likelihood that I had cancer for the 4th time. I was sent for an ultrasound and the technician couldn't seem to find the lump. I couldn't find the lump despite being told where to find it. I went to a breast surgeon who also couldn't find the lump. The earliest she could do a biopsy was 2 months away. I couldn't wait in suspense that long so found another surgeon with a clearer schedule. The biopsy found that the tumor was deep inside my breast which was why it couldn't be felt. It was indeed cancer and I was sent off to a new plastic surgeon to consider my options.

Once again I opted for the back muscle with implant procedure. Although I had gotten my first reconstruction fixed a number of years earlier by substituting a silicone implant for the saline one, that breast was ugly again as the implant had become encapsulated. The plastic surgeon was not prepared to deal with 2 problems at once and wasn't sure if the left side could ever be fixed as he was afraid the whole breast would collapse.

In the 16 years that had passed between cancers, some things had changed a lot. Whereas with my earlier cancers it was about 2 -3 weeks from finding the lump to the time of surgery, this time it was closer to 3 long stress inducing months. And where I was once kept in the hospital for about 3 days after a lumpectomy and node removal, I was told that it would be one night with just a mastectomy and 2 nights if I also had immediate reconstruction. As the single Mom of a 10 and 11 year old and being the owner of 2 big dogs who think they are lap dogs, I panicked as to how I would cope. The doctors somehow worked it out so I spent 5 nights in the hospital which was a huge blessing.

The tumor which everyone expected to be very small, turned out to be 2.7 cm. Once again, it was triple negative, grade 3 making it the most aggressive cancer around. The pathologists disagreed as to whether this was a recurrence or a new primary. It had either been silently lurking for 16 years or it was a brand new cancer that emerged after a long remission. In the end, the treatment was the same - 4 sessions of chemo with cytoxan and docetaxol. This time, I would lose all my hair and would be sicker than with my first chemo as it was a stronger drug combination.

How did I feel about this recurrence/new primary? I felt stunned as I thought 16 cancer free years meant I was finally cured. I also felt emotionally tired from the time of the mammograms to the end of treatment. I didn't think I had the mental stamina to be a sick person for 9 months to a year for the fourth time. I was tired of cancer and just didn't want to do it anymore. Finally, it was different this time around with 2 young children to think about. My first concern was how I'd take care of them when I was sick with chemo when I had no one to take care of me. My bigger concern was what would happen to them if I died. Their father had remarried and showed little interest in them since he left the home.

We somehow muddled through these issues. I got very ill a week after my first chemo with a high temperature that resulted in a 4 day hospitalization as my white blood cells were registering zero. The ex-husband did take the kids and dogs during that period and never let me forget what a big favor he had done for me. My daughter managed to have a headache or stomach ache during all my doctor days or chemo appointments and because of her young age, accompanied me to almost all of them. She became very clingy and never wanted to leave my side. My son took the opposite route by pretending it wasn't really happening. My little chemo hats and scarves bothered him considerably. He would have been happier if I wore a wig 24 hours a day, even to bed.

I had taken the BRCA tests sometime in the late 90's when it first came out. I was found to have a variation of unknown significance but nothing that was positive for the BRCA mutations they were looking for then. With cancer 4, I was retested as more of the genes had been mapped out. I was found to have a major BRCA1 mutation, with the last 4 axons or sections of the gene blank or missing. As I was now at an increased risk of ovarian cancer, I had further preventative surgery by having my ovaries and tubes removed.

I still have not gone for the exchange surgery to finish my right breast reconstruction. I am not sure why I am dragging my feet on this one other than to say that I am not in a hurry for further surgery.

What does cancer mean to me? Its a disease I can't seem to ever be rid of although luckily it has never attacked anything but my breasts. Do I think I have seen the end of it now that I no longer have breasts or ovaries to attack? Honestly, no. My mother had 4 different types of cancers in a 12 year period. Her cancers started later than mine at the age of 50. I have been extremely fortunate so far that none of my cancers have metastasized. Will my luck hold out forever? I really doubt it. What do I feel about the term survivor? Having had breast cancer 4 times over 23 years and not dying or developing mets, I think that word fairly describes my experience. It is better than the alternatives - victim, patient, or thriver. I don't think of myself as brave or courageous, merely lucky not to have developed mets or died. I am not the poster girl for how to survive cancer long term. I didn't change my diet or take special supplements or become a marathon runner to reduce my cancer risks. I don't know why I am still alive when so many other more worthy people have died. I am a fatalist. It just wasn't my time to go I guess.