I can’t take them anymore, most of the time. This has been building for years. I can’t do some of my best things anymore at all, like spinning. If I spin, I spend the next two hours completely breathless, wheezing, coughing. If I take a walk in the cold, I can't breathe all the way in. It's terrifying. My favorites are my enemies, now.
One thing I have learned in therapy is that I am a good gauge of many things—decidedly not including my own physical pain and suffering. I just adapt and move on, without seeing the change as a problem. It isn’t denial. It’s a broken adversity switch.
There’s a lot of backstory here, but I’m not going to tell it, not today. I will tell you some things that are true, as I promised when I last wrote here, six months ago. I’ll tell a true story. I’ll tell a story that conveys something more than nothing.
It isn’t the obvious thing to go to the doctor when you can’t breathe. Not when not being able to breathe means you might be dying, albeit slowly. No, really, this is true. If the reason you can’t breathe might be that your breast cancer has metastasized to your lungs, in which case your cancer would be incurable and deadly 100% of the time, making that appointment isn’t obvious. Why not?
Because it wouldn’t matter. Because it wouldn’t change anything. Because sometimes knowing something puts you in the final when you’d rather be stuck losing the playoffs for a while.
Because you, and you, and you too—you can all go get a chest x-ray, a CT scan, an MRI. I can’t. Of course, I can. But it’s different for me. For me, it’s to find out if I’m going to die or not. Imminently. Slowly, painfully, but at the same time too quickly and not horrendously enough to want it to happen just to get it over with, not at 43.
Sometimes, you wait. Because it’s your son’s birthday. Then your husband’s, then, somehow, yours. Then, it’s Halloween. Then, it’s Thanksgiving, then Christmas. Because of vacations, or things to look forward to—none of these are the times you want to learn there won’t be much more of this. It’s never the right time to learn you’re going to die.
So you wait. And then, you pick up the phone before you can stop yourself, just because you have a break in your work day, and call your primary care doctor—not your oncologist. Before you can stop her, the receptionist makes an appointment for you—for two hours from now. For today! And you can’t wait because you opened Pandora’s box. You go, you talk to the doctor, she is new to you and sympathetic and you almost feel sorry for her when you ask her if she knows about your cancer and she says, not quite awkwardly, “yes, yes I know.” You tell her, “well someone like me—I want to find out if other things help before I do the chest xray.” Your argument is understood, and rejected. Within another 30 minutes you are getting the scan.
This is not how you expected to spend your Tuesday.
But it’s done, and there’s nothing to do but wait. They should rename cancer “The Waiting.” You don’t even try to work. You eat sushi. You overhear young men talking about their muscles, their gym time, and you find yourself enraged at them, so insufferable and so obvious in their insufferability. You hear the word “pecs” and you turn all the way around and glare.
You tell a few people. They say the same things. “I can’t imagine.” “How do you do this? “How do you feel?”
You want to be honest, but it’s hard.
You don’t feel anything. It’s been years, years before cancer even, since you felt the things that other people feel.
You are anxious, but how different is it than the hypervigilance, the constant desire to escape, the tweaking you have felt for decades?
You aren’t in denial. You are actually in the opposite of that—deep within hyper awareness.
And you have an important decision to make.
How do you spend what might be the last hours that you have in your life before you learn that you’re going to die?
Well, I already told you. It was a Tuesday. There was sushi. And annoyance. There was me, telling my husband he had to make dinner, telling a friend I wouldn’t be good company, looking at my kids and thinking how young they are and how much I’d like to see them grow up.
I didn’t feel rage or sadness or grief. I don’t feel those things, not so well, not anymore.
There was the twinge of acknowledgment that tomorrow, now today, would be the five year anniversary of the last chemo. Five years post treatment is supposed to mean something. They call it a milestone.
Three years was one too, and it was after that that cancer came back. Statistics and odds are just that—no one ever said you had to be on the right side of either of them.
There’s this: there’s no reason this wouldn’t happen to you. There’s no reason this happens. This isn’t about reasons. If I had to give this blog a tagline it would be:
“Life isn’t about what you deserve.”
So, how do you do it? The only way you can. You make other people do things your way. You tell the doctor no, she cannot give the results via the online portal. You tell her to call you, no matter what. She touches your shoulder, something you would never do. She says “OK. I can imagine you want these results ASAP.”
That night, she calls and leaves you a voicemail. And an email. And she says “I didn’t want you to spend all night worrying. Your chest xray was normal.” You thank her and she writes “I can’t imagine.” You don’t tell her why she needed to call you, because she knows some of it but maybe not the rest. If they only call when it’s bad news, you know it’s bad the minute the phone rings. If bad news means imminent death, and you tell them to call you regardless, there are a few seconds there where the game isn’t over yet. You need those seconds. You deserve them, even if this isn’t about that.
She can imagine, and she doesn’t want to, and you don’t blame her.
While you’re waiting for the xray your husband does what he does and texts you random articles to distract you. You don’t read them. You tell him that. He then asks something you aren’t expecting. He says he can’t believe it’s going to be that news, Bourne. But what if it was, or if it wasn’t, what’s on your bucket list? Should we just be doing that stuff anyway, regardless? And you tell him the truth.
Your bucket list is not to die, not yet.
That’s a true story.
Bucket List By Katy Jacob
a turtle caught near the lake house that was someone else’s lake house all the time except for a week each August in the early eighties and kept in a bucket until Chicago didn’t even survive the night, drowned in its own vomit, the Jimi Hendrix of turtles before you even named it, is the only thing you ever think of when someone says “bucket list” and they mean what would you do if you could do everything differently and of all the possibilities you think only of the turtle climbing out of the bucket in defiance and living for a few days in the grass or at least dying with a lot more dignity you think if you’re being honest the only thing on the list is a cold-blooded escape from a place that you were never supposed to get out of alive even if it housed you with the best of all intentions
Today as I sit here writing for the first time in six months, I wonder if I remember how to do this.
And I realize that I do, but that I am not going to do this the way I did it before. That is probably as good a thing to write about as any, after all this time.
I have been meaning to write for so long, but I have had no real desire to do so. Today seems important, though.
Five years ago today, I was diagnosed with a rare and aggressive form of breast cancer--for the second time. I had survived past the crucial three year mark with no evidence of disease, albeit barely. I was re-diagnosed 3 years and 2 months after my first diagnosis.
You could go back and read what I wrote at that time. For the first few months of my new cancer, this blog took on a life of its own for me. I have never been well known, but in comparison, it seemed that so many people were reading it. And yet...well, that is what I will write about today.
Five years is significant. Five years in the world of triple negative breast cancer is a milestone. Five years is a cause for celebration. Five years is a Thursday. Five years is a busy day at work. Five years is my kids watching Netflix while I write this. Five years is it's too hot to cook. There is no way to explain to friends, family, or strangers what five years of life you didn't expect to get is like, or what it is like to not expect it, or how it has changed you, or why it matters or doesn't matter.
Or is there?
In the blog post before last, I wrote about my depression. Or, at least, I used my depression as an artistic vehicle to tell the story I wanted to tell. I am reading a book right now that I am truly in love with, called the Girl Who Smiled Beads by Clemantine Wamariya. It is the story of a girl who survived the Rwandan genocide at age six, became a refugee in seven different countries in seven years, eventually landed in the Chicago area and went to Yale. But it also is not that story at all, because that sentence tells you nothing. It is so well-told, so real in her rendering of how she actually experienced the events that turned her life into a cruel, mundane, beautiful absurdity. It is a story I relate to, when she describes her coping mechanisms, and that I feel guilty for relating to, though not really, because guilt is an emotion I lost somewhere along the way. In this wonderful book, the author says:
I told a true story. I told a story that conveyed nothing.
And that--that is what I did, in some ways, for almost 8 years when writing this blog. I told true stories. I never said anything here that wasn't true, real, and based on my own experiences. And yet. What did I say about myself? What did I say about my family, my disease, what did anyone learn? I used my experiences to make the points I wanted to make--about society, about illness, about death, about injustice and the false meritocracy. I wrote words that moved people and inspired them and helped them even, most importantly, in the case of women with cancer who were aided by this blog. I wrote words that created a space between my actual life as I was living it and the part I was willing to share.
I told a true story. And in some ways, I told you nothing.
I wrote about my depression when I wrote about my daughter running. I sort of explained how medication brought me to a point of being able to do something useful about the 30+ years of PTSD or whatever you want to call it that I have learned to function with, that I have used to my own benefit. It was only when it became unmanageable to need to escape all the time--when I had a third cancer scare that turned into nothing, and I had prepared myself for a fight that didn't come, and then I had no idea what to do--that I needed intervention. It is one thing to have a fight and flight response when it helps you, even when you are fighting and fleeing your own body. It is another thing when you are sitting in your cute house in a bucolic neighborhood with your charming family and stable job and husband who adores you and that instinct is in hyperdrive. What is there to fight? To flee? That is how you find yourself refusing to eat, crying uselessly on the couch, wanting to get a divorce, quit your job, and move out of state all at the same time--just to escape.
I wrote about that, but not really. I don't really know if it's worth writing about--maybe it is. One thing that is worth relating is a conversation I had with the psychiatrist who helped me figure out my dosage. I have a therapist, my gynecologist got me the prescription--but I needed an expert to help dose me. So I met with this woman. She needed to know something about me. She asked me some questions. We didn't have much time. I figured I should give her the major highlights, leaving out almost everything that I thought was relevant. And so I told her about just the physical trials related to accidents or disease. I said well. I had faced death five times by the time I was 40, twice by the time I was 10. I sometimes wonder if I have a chip missing because it is hard for me to feel certain things. It is easy for me to feel empathy and hard for me to feel sympathy, for example. I don't know if it matters that I am like this. It is hard for me to feel that some things matter, including me.
And this quiet British woman earned her title and her salary by breaking something down for me after the long pause that followed my introduction.
Well, I wouldn't expect you to be different. It is like when people survive wars and are then expected to focus on regular things, or when people experience intense pain and cannot sympathize over a paper cut. You do not have a chip missing. You just are not living with the same illusions that protect most people from feeling as you do.
What illusions? She began:
The illusion that life is fair, that you are in control, that you won't die. You know these things are false, and you know them every day. Many people still have the safety of those illusions.
And in my mind I continued: the illusion that someone will save you, that you are important, that anyone isn't important, that suffering isn't real, that people get what they deserve, that things will be all right.
If this sounds depressing, understand this: it isn't, at least to me. This is not pessimism. This is an understanding of how suffering is the reality that ties people together, and that suffering is unique, personal, constant, global, and uninteresting. The statement of illusion is a soundbite describing this blog, and why I wrote it--and why I stopped.
I stopped writing because I no longer wanted to write a true story, but one that revealed nothing. And yet, I could not imagine that anyone would want to read a true story that revealed anything real about me. I also did not want to give up the right, the gift that I have, to craft my true story to read as I want it to read without allowing anyone reading it to get inside me--inside my body, my brain, my memories, my stories. I have always written words that allow me to keep my experiences, memories, and sense of self as mine. You cannot read my words and tell me my story isn't true, because I do not give you enough rope to hang me with. You cannot read my words and tell me that you believe my words but think they are irrelevant, because I crafted them to make it clear that I am not asking your permission for relevance.
I am expert at this--and for good reason. The closer I got to telling a true story that revealed something of me, the more it alientated people from me. I would write something raw and I would get messages: Katy, you sound angry. Katy, I hope you get back to being yourself. Katy, I stopped reading because you got away from sounding like a fighter.
And I wrote anyway, because I was writing for an audience of two. I was writing a memoir and a life lessons manual for my children. This had the added benefit of the fact that neither of them, to this day, has ever read a word of this blog. So I was writing for an intimate audience whom I expected to read this once I was dead.
Obviously, if I stop doing that, this will be different.
And I am going to try.
Because I am still here--8 years later, 5 years later. This country is now a living and breathing example of all of the illusions that none of us can afford to live under anymore. And if life is to be absurd, and unjust, and out of control, and if we are all to suffer but not to equal extents and if we are all adrift but some with anchors and some without, why not write a true story, one that conveys something?
This is my explanation. That is what I am going to do. It might be self-indulgent. I don't care. The self is what we have left, and what we never had. It's worth writing about, especially when its existence in the corporeal world continues to take me by surprise.
I'm going to try to start writing a true story--about me. If nothing else, it will be a new escape.