Thursday, January 24, 2013

Day 945: What Fools These Mortals Be

I need to start this post by saying that I'm sorry if I offended anyone by using a Shakespearean quote for the title. I am not a long-dead Englishman, nor do I intend to imply that I am anywhere near as interesting as Puck, though the last time I attended a performance of A Midsummer Night's Dream (at the Shakespeare Theater in Chicago, with my kindergartener, on a school night), a bald woman was playing Puck.

So there's that.

Regardless, I'm writing this today because I'm having one of those parenting moments that is compounded in difficulty by the fact of me having had cancer.

I have a 3.5 year old who is very cognizant of death, and he wants to talk about it--a lot.

Some would say that it's a stage, or that all kids go through that at around his age. I disagree. I remember my brother being very concerned about death and about the bad things that could happen to people, but honestly, I was not--not until I got hit by a car when I was 9 and actually almost died. Even then, once I admitted to my grasp of mortality and imminent death, I went back to normal, concentrating on the day to day aspects of life.

My daughter is like me. Lenny is extremely bright, very aware of what life is all about and how things relate to each other, but she is also very focused on her own small version of life, of what comes next. And then, there's Augie.

He's the kid we are convinced has been here before, because nothing else could explain him. You strip away the crazy antics and the cuteness and the wild red curly hair and you are left with a person who seems to understand the adult world better than most of us adults.

This is the kid who grabs your face with his hands, looks you in the eye, and kisses you. The kid who nods his head in appreciation of your choice of wine. The one who sees a pizza delivery car and proclaims that it looks like a police car because there is something on top of it, and you realize he is only pointing this out because you are going over the speed limit. This is the kid who seems fearless, but shuts his eyes when crossing a bridge because "the car is too heavy and we might fall." The one who turns away when the trapeze artist is doing her most complicated tricks, because he doesn't want her to "fall all that way and die."

He is the kid who will ask me, so earnestly, "When I am in fourth grade, will you die?"

And I, being me, being in the situation that I am in, take his question seriously and say: "I hope not. I'm young and healthy right now, and I plan to be that way then too."

Augie doesn't really understand that I had cancer. I mean, he knows about it. We talk about it. But he doesn't remember any of that time, and if he sees a picture of me bald, he knows it's me, but he speaks about it devoid of any context of cancer. It's just another haircut to him. He knows that cancer is bad and it can kill you, because Lenny casually says things like that sometimes. But his interest in death is larger than that, and is not related to me--I know that.

Augie knows that we all will die eventually. He is just too young to understand what eventually means; to him it could be tomorrow, or in 4th grade, or in 500 years. He recognizes the impermanence of life, the thing that is most difficult for anyone to discuss. He says things like "I don't ever want to leave this house," because he knows that he will, and he loves us, and it makes him sad. He talks about "when I'm grown up Lenny will not be with me," because it breaks his heart. He is clinging on to those damn mamas because he knows he is too old for them, and he doesn't want to be too old. Hell, his interest in the legal drinking age is probably tied up in all of this too--or at least I'd like to believe he's not already planning his egregious hell-raising stage.

This is a tough one for any parent--trying to figure out how much to say, what to reveal, what to leave alone. It's a balancing act of answering his questions honestly and reassuring him at the same time. But for me, it is also so painful, for entirely selfish reasons.

Like many people who have spent time cheating death--and I say that not just as a cancer survivor but as a survivor of other things as well--I walk around with death as a constant companion. I've made my peace with the man, I suppose. I stop myself from going to that place that allows me to think about eternity after I'm gone, because I don't want to wander the world looking at people and seeing nothing but bones. A lot of my personality--the lightheartedness, the lack of pretension, the fact that really little things can please me so easily--is probably directly related to this knowledge that I've had for almost 30 years. Death is coming, for all of us, so try not to sweat the small stuff.

These days, it's been harder for me to just shrug and repeat that refrain. Maybe that explains the bourbon or the gin toddys I have at night. Maybe it explains the constant need to move my body, even while working in the office or at home--I have this inability to sit still, to be immobile, just like my son. This has gotten worse for me over time, not better. People say he will grow out of it, but I doubt it. Augie knows what's coming. He wants to feel as much as he can in the meantime. I understand him.

How can a parent admit to the eventual death of a child? It is impossible to contemplate, except with the understanding that of course I will go first. If I go early, that will make it easier to believe that my kids will live to be 300. But if he needs to acknowledge it, all I can do is acknowledge it with him and tell him that eventually is a very, very long time from now. Could that be a lie? Sure, I suppose. But I know my son. I understand him, as I said. He knows that though I am his mother, I have not one bit of control over life and death. And so he says to me, "mom, come on...lie to me."

So I will. And he will feel better, knowing that I am willing to look him in the eye and take responsibility for something I cannot possibly take responsibility for--his eternal safety and happiness. It is the fact that I would if I could that comforts him. And so we talk about death while we eat cereal, and sometimes I get exasperated with him over it, just like I get exasperated when he takes one bite and decides it's time to run laps around the house before he takes the next one. It's all in a winter's morning at our house.

It's strange loving people while working so hard to push them away from you, so they can walk away and become themselves. As parents, we think that we have these conflicting feelings on lock, but really, kids feel it too. And it's hard to know whether we should shield them from all the knowledge in their little brains, or work with them on finding an appropriate place to put it. I guess I am working towards the latter.

All of this made me think about a poem I wrote for Lenny just after she turned one, when she learned to walk. The poem takes place in early January and focuses on the time when she was about ten months old and starting to grasp the concept of walking. One of my greatest cancer regrets is that I don't remember watching my son learn to walk. He took his first tentative steps right around the time of my surgery, and really got moving while I was doing chemo, and I was so sick that I missed it. And now all he does is run, like he is hellbent on all the places he needs to go, until he slows down and looks at me with those old eyes and says "Kiss, mom. I love you."

Me too kid, me too.

by Katy Jacob

It’s started again.
The whole cycle, the twelve tests.
Because we live here,
you get to see it all at once—
early heat, a river of ice,
eighteen shades of blue.
Or you would, if we let you out.
But the world around the living room table
is a grand place, it exhibits signs
of what is to come, or what is possible.
Cold grooves in the floor,
hairbrushes, paper and keys,
a place to hide things.
You’ve put your faith there.
We can’t know what will happen
in your mind as you let go.
When you do, we’ll sink back
into ever lightening evenings,
and touch this table,
knowing that’s where you learned
to let your heart leap up
as your feet traced a month’s worth of days.
And knowing too that we are not the only ones
who impatiently tell time
by how long it will take us to get to
the places we’ve never been
from the place someone who loves us
will always want us to return.


  1. Dear Katy,

    I have just found your blog while searching about triple negative breast cancer. My mom (age:52) had a surgery because they have found a tumor in her breast and the tumor that was cut out showed she has triple negative breast cancer. Unfortunately I couldn't find lots of "real-people" information about it in Hungarian and she barely speaks english so I am glad I have found your blog. I will start reading it from the beginning. It is very useful to finally read the truth about it because as you say there are so many false information everywhere and I really have no idea what to think...I just wondered if later on I could turn to you for some questions? I understand if you don't have time for this. It is just really hard to know what to believe. Your blog is real and I want to face reality...Thanks for sharing your journey! micu

    1. Sure--I would be happy to help if I can. TNBC is scary but I've met many people who have survived it. Peace be with your mom.

  2. Thank you Katy! Do you have an e-mail address where I can write to, maybe? My mom was thinking about whether your hair grows back straight instead of curly?(I showed her your pictures) She has a very similar hair to yours and are very sad to loose it pretty soon but she has accepted the fact.She was also told that it will be terrible to be bold. she would have to wear a hat during sleep becasue it will be cold and hats will fall off herhead because the skull is slippery and things like this. did you experience the same? Is there anything that helps to make it easier? IS your hair as strong as before? About testing whether the cancer is BRCA positive or not what do we need to do? Do they have to test her or us (my sister and I) or both? Does the test hurt? I am going to ask the doctor as well but it feels better to ask from someone who is not a doctor. Ok, no more questions for today:) Thanks again for replying! AI will follow your blog from now on and hope the best for yournin the future!

  3. Well I have written a LOT about being bald--especially in May-October of 2010. It was horrible to lose my pretty hair. But once I was bald, that's what I was--I never wore wigs or head coverings and my hair came back the exact same color and texture as before (at first it was translucent and fine like a baby's hair, but that didn't last long!). And now I cannot imagine ever having long hair again and sometimes I even miss being bald, oddly enough. But that doesn't mean it's EASY. Also the BRCA tests that I did were simple blood tests. Waiting two weeks for the result was much worse that the test itself! I hope this is helpful...