Day 1,316: Hair

(June 2010, about a month before I lost my hair to chemo)

I've written my share of blog posts about hair, or the lack thereof. I wrote many of these back in 2010, when I was mourning the impending loss of my "famous" hair, the hair that other people defined me by since I was about 12 years old. I had long, auburn ringlets. I had hair that made people forget my name, that led to situations like some man running after me--literally, like in a movie--while I was on a break from work when I was 18, to tell me he just had to talk to me because I was so pretty and oh my God that HAIR. I have redheaded children, I come from a family of 4 redheads. Hair and Katy seemed like the same thing for so many years. When I was a freshman in college, during orientation, we were put in a group of strangers and told to say something nice about the other people. I said things like, you're really friendly. You have an infectious laugh. You seem like you listen intently. Every single person, with one exception, said the following to me: You have beautiful hair. The other guy told me I had great posture. When my son was a baby, the other moms at his daycare never bothered to find out who I was, I was just the mom with the "pretty red hair." People stopped their cars to ask me about my hair, the way they do with my children today. I lived with all these strange ideas about redheads, these stereotypes about us being feisty and sexy and stubborn and oh is ALL your hair red wink wink (correct response, formed by myself at age 16: "if that was any of your business, you'd already know").



(age 16, on the beach)

And then, I came down with one of the few diseases that would take that hair from me. People, a few men especially, wept when learning I would be bald. People told me I would be beautiful "anyway." I received a lot of advice about wigs. I was told by a social worker in oncology that my hair was "epic" and my surgeon's nurse commented on my hair every time she saw me, knowing full well I wouldn't be able to keep it. People said "it's just hair." Other people said "it's not just hair, it's identity, isn't it?" And I didn't know how I would feel. And then...



(June 2010 again)

I was just bald. I was bald because of the poison coursing through my veins. The wigs annoyed me. I had bigger problems. I kept my hair, my old hair, and then it just seemed like some dead stuff that had nothing to do with anything anymore. I realized something, that hair is indeed cosmetic, it is NOT identity; I felt that the changes the temporary menopause brought to my sexuality were much more identity-changing. I never felt ugly, I never felt not sexy, I only temporarily felt like I looked like a boy, I didn't worry about my husband being attracted to me, and more than anything--more than ANY single thing, I never didn't feel like myself.



(August 2010, my 35th birthday)

Those decades of others defining me by my hair were just that--other people's opinions, other people's judgment. It had just about jack shit to do with me and who I was.

I learned it WAS just hair.

I was glad to be able to keep my hair during this round of chemo, not because I cared about being bald--that didn't rank on my list of issues when making my chemo regimen decision--but because it would be easier for my kids to forget what was happening in between chemo weeks if I had hair. Then, it started to thin significantly in the final weeks, and I thought about buzzing it again. I have a fairly conservative job, so that seemed like a bad plan, so I just chopped it into this pixie-ish thing I have right now.



(last weekend, post haircut)

And now I want to tell every single person I see--men, women, children--to cut their hair. Everywhere I go I see too much hair. The guys at my 20 year high school reunion who were bald would remark about it and I would say, hey, bald? Whatever. I've been there. It's not so bad. I remember at age 17, 18, I was dating a man with long hair, and there was just hair EVERYWHERE. I would find it on EVERYTHING. Gabe has told me that my hair was very pretty, but there was a lot of it, and it would get in his mouth, and hey just do whatever the hell you want with it, if you want me to get out the clippers and buzz it, just let me know, you don't NEED hair.

I've stopped reading women's magazines because 90% of it is dedicated to hair, and makeup, and things that seem immaterial once you've lost your eyebrows and you have chicken-little hair on your head and you just rocked it out because there were other problems, like the CANCER. Hair wasn't about femininity, sexuality, identity, youth, or anything else.

It was about dead stuff growing out of your head, as my daughter told me back in 2011. I said it then and I will say it again: that dead matter laying in a box for a year? Better it than me. We never, in the end, really had that much to do with each other.

A woman I know with triple negative, BRCA+ cancer, who was bald, had a double mastectomy, ooverectomy, and hysterectomy and who was burned from radiation and the whole lot of it, perhaps said it best:

"I thought I was losing everything that made me who I was. Turns out, I was wrong."

Day 1,305: The Body

I know that in some sense, if I am to write this blog, I should have written a post last Thursday, when I had my last infusion in this round of chemo. I should have written a post about being "done," about what a long road it's been, and all of that. But I didn't.

I didn't, because I wrote that post three years ago, when I finished cancer treatment the first time, on December 10, 2010. I called it "It's All Over but the Shoutin.'"

I was wrong. Everyone was wrong. It wasn't over.

It might not be over yet. We shall see. I still have about a 25% chance of getting mets. Metastatic breast cancer doesn't care if you had a mastectomy, if you have completed 10 months of chemotherapy in three and a half years, if you are young, if you have children, if you're a badass. It just doesn't care.

So many women with this disease focus so much on the anniversaries, the random dates that might signal whether or not you will live, because you have made it this far, because you have survived.

It's all meaningless to me now. I have probably had cancer in my body for the last seven years. For some reason, it hasn't spread anywhere outside of my breast, but that doesn't mean that it won't. So, on the one hand, I walked away from chemo--again. On the other, I will have lasting effects from it, perhaps permanent ones. In the last month alone, my hair has thinned, I have entered into what I hope is temporary menopause, I have hemorrhaged so badly from hormone changes that have affected my ovaries and other reproductive organs that I needed a D&C, I have in the last few weeks been experiencing horrible abdominal pain, I am anemic, my libido has tanked, and I am tired.

And so it goes. These things can be said in the same tone as many other things: I woke up today and could no longer walk. I had 100 seizures today. I am in a wheelchair, I need someone to move my body so I won't get bedsores. This medication is poisoning my liver, but I need it to avoid potential brain damage from seizures. My gallbladder needs to be removed. There's a gun at my head--literally, a real one, all metal and coldness. I am a baby but that penicillin nearly killed me. I am bald. I had my breast amputated. I am hugely pregnant. I am too skinny due to chemo sickness.

All of those statements describe things that have happened to the body, to my body. But it is just a body. Its purpose is not to be beautiful, to look young, to be a subject of comments from strangers. Its purpose is not even to help push through suffering, nor to experience joy in all the things it can do.

No. The body is a vessel. It is a container, a set of bones and muscles and flesh and fat and neurons and things that break and heal and disappear and reappear and live and die.

The body is something that holds me, that contains me, that allows me to be. It is not something that I choose to fight and it is not something I choose to celebrate. It just is. It allows for me to have a place to hold myself, it enables my personality to come to life, it provides a background for things--all kinds of things. Including this.

Day 1,300: Looking Forward

I know I should write tomorrow, though I might be too out of it. I'm sure I will write on Friday. But I need to get this off my disfigured chest tonight.

Tomorrow is my last chemo treatment. I say that, but I don't like to say that. I said it before, back in 2010, and it was a lie. Tomorrow is the last chemo treatment that I know of, right now. It's possible that at some point, even in the near future, I will find out I have mets and be on chemo for the rest of my short life. I know that is not an uplifting thing to say. I'm not sure at what point cancer was supposed to be uplifting, but our culture seems to have embraced that idea. Anyway, this uncomfortable statement is a possibility, and one that I live with every day. I will not be "done" with cancer appointments after tomorrow--it doesn't really work that way. I see my surgeon for a six month follow up from my mastectomy tomorrow (that is so hard to believe, that I have been living with this alien thing in my body, with this amputation, for almost half a year), I will have a diagnostic ultrasound for the cysts in my ovaries at the end of the month, I will at some point have this tube removed from my fake breast that was there in case I wanted to "pump it up," I have a mammogram for the right side coming up in May, and the clock will start over with my regular appointments with the oncologist; I graduated only briefly to 6 months, and now will be back at 2 or 3 months.

It will be over in a sense, but only a narrow one, and not over, at all, in my mind.

Yesterday I had that crushing depression again. Perhaps it's hormones--my period is late, shows no signs of emerging, though I am not sad about that really due to the blood loss from last month, however I do worry all the time about permanent menopause. Gabe and I got in a huge fight last night (yes, that happens), and it was partly because of my depression and partly because I have become increasingly frustrated with what I perceive to be everyone's expectation that I will always be normal, always feel normal, that I will just keep working, doing housework, taking care of everyone else, deal with 12 small domestic crises at once, be a bad ass at the gym, or whatever. The truth is I am tired. I am physically tired--this chemo fatigue is something else. And I have given up nothing, pared down nothing, haven't taken it easy, have actually piled on more responsibility rather than less. I feel that I've earned the right to be tired, but my saying that seems to take folks, including my husband, by surprise.

So I'm physically tired, and that makes things hard, but I'm also tired in another sense. I am tired of cancer. I am tired of treatment for cancer. I am tired of this nonsense that fell into my life like a huge pile of bullshit. It mostly doesn't MATTER than I'm tired of it, because what needs to be done needs to be done, but I am definitely looking forward to having a break.

I am also looking forward to looking forward without some crushing feeling of sadness.

Last night, I couldn't put my kids to bed. We often take turns so it wasn't that big of a deal, but I was just...sobbing in my living room. And I'm not even good at sobbing. I can do it for about 2 minutes, and then it just stops, whether I want it to or not. I sat there, thinking about the years. All the years. The ones I might miss. My kids young adulthood, their emerging personalities and hardships and loves and everything. The idea of missing it all. The idea of missing my own future, my own middle and old age. So then I told Gabe that he should make sure to tell the kids about me after I'm gone, but that he shouldn't be too maudlin about the whole thing.

No one ever wants to hear anyone talk about death, especially people who have reason to believe they might die sooner rather than later. But I have cheated death 5 times--5. I don't have to apologize anymore. I have little to no nostalgia about the past--I think about it a lot, but I feel no loss or longing. I long for the future. I want to keep telling stories. I want to have stories to tell that take place in 20 years. I want to just be healthy and live in my body like it is a normal body, though it never has been, regardless of what it looks like, this body is a story itself, a character in its own right. May it take a long, long, time to get to the end.

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.

Intersection
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.

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.

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

space

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

alone

time dips back
into shadows

and I see you again

standing in towns
small as specs

living in the blink

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.