A couple of years ago I had some windows replaced in my old house and got an estimate for a few others that were on their last legs. At the time I thought the sales guy was a bit of a creep but I thought: “Who cares? He’s here for ten minutes and then I’ll never see him again.”

After the windows were installed I thought: “Boy that creep sells a great product, and they got the work done quickly!” So when a little gap – big enough for a chipmunk to sneak in – appeared in the remaining windows, I knew just who to call!

Jason* returned my call in a timely three weeks and said he had to come in person to remeasure the windows. Do windows change dimensions with the passage of time? Maybe, it’s not my area of expertise. So Jason shows up and measures and gives me a long explanation about tariffs and materials and I practiced the art of chit chatting while leading people toward the exit.

We were standing at the front door and I said “Well Jason thanks for your time, let me know when you have the new pricing and I’ll drop off a check.”

Jason said “Ok sounds great. So how have you been?”

“Great.” I said

“Well you look great,” said Jason. “You look like you lost weight.”

“Oh yea,” I said. “I have cancer.”

“Oh no.” Said Jason. “That’s not good.”

“No,” I said. “I guess that’s why they say you shouldn’t comment on people’s weight.

“Yea!” Jason said. “Well have a good day!”

“You too!” I said as I pushed his dumb ass down the stairs and ran him over with my car. I mean as I opened the door for him and watched him walk out.

Is there a moral to this story? No, because this will not stop this man from commenting on another woman’s body. But it did feel good to use my cancer to humiliate a creep, even for just a few moments.

*Name has not been changed because fuck that guy

To The Best Team In The World,

A quick update for you: Tom G, Tommy Mulroy, and I met with the oncology team on Tuesday August 5th.

We did labs and they think the immunotherapy is causing liver inflammation. They’d like me to stay on prednisone and skip my infusion this month. I’ll continue on the targeted treatment, which is a daily pill. In the past that medication has caused pretty rough side effects but the steroids have really helped this time around.

In September I’ll do another infusion and scans a couple weeks later. They want to see all the tumors and lymph nodes get smaller. This round was more of a mixed bag – some shrinkage in some spots but some growth in others.

Overall I feel ok about this news. It would be nice to just be able to stay the course and not feel like I’m playing wack a mole with side effects, but it would be nicer to not have to deal with any of this bullshit at all. Here we are.

And I get to ride the prednisone wave, which is a wild drug. They upped my dose this week and some days it feels like I’ve been shot out of a cannon. Then when I do too much I crash out, which is also like getting shot out of a cannon but straight into the ground. While farting continuously all the way down.

There’s a surprising amount of farting involved in cancer treatment. Every day is a damn good day to be alive. I’m stretching my days out long and slow and I’m appreciating all of it. I don’t feel like a cancer warrior, I feel like a cancer Buddha.

I woke up at 5:50am to go to Northwestern for my second immunotherapy session. I didn’t have time for liquid eyeliner. I don’t know how to wear cozy clothes outside of the home. I was scared.

First they take labs and we have to go through the failing attributes of my veins. This one is too small. This one is too rollie. This one has a fat ass and is a bad speller. Then I am supposed to pee in a cup and end up peeing all over my hand. So far I am not acing this appointment.

My brother Tommy, my husband, and I sat in the tiny room. The thermostat was set at 75 degrees. They now get to do their favorite activity: describe a movie from the 90s that I haven’t seen. Last time they did Rudy. Today they did The Running Man with such passion that by the time they got to the end the thermostat read 76 degrees!

The doctor and nurses and clinical trial people crowd into the room. Last time I felt like I talked too much but then they’re all just staring at me and because I only have one thing to talk about…I launch into it.

Here’s the cute thing about being almost 47 and recording your cancer symptoms for a clinical trial: who fucking knows what’s from the cancer and what’s from being middle-aged? Creaky joints. Thin skin around my eyes. Bleeding gums. Sores in my moth and throat. The desire to go to bed at 9 and sleep til 9. Food tastes gross. Nausea.

I have exhaustive notes. I’m looking forward to being praised. Perhaps Northwestern will institute patient grades, in which case I’ll get an A. The medical people don’t talk very much and I can’t tell if it’s because I’m so entertaining or because they can’t believe how much I’m talking about myself. Maybe both.

My labs come back and my liver enzymes are higher than they were two weeks ago. That plus my “constellation” of side effects made the team decide to have me skip three days of the Cabozantinib (the targeted treatment) and redo the bloodwork and maybe reconfigure the dosage. I’m incredibly disappointed. They tried to convince me that it was fine and normal and part of the process but it feels real shitty.

The labs didn’t stop me from getting the immunotherapy infusion. And I think overall I got at least a B.

I came home to a kitchen full of happy 13 year olds on a lovely summer day and all I could do was feel sorry for myself. Which I HATE. I don’t want to be poor me. I want to be poor lucky me.

Tomorrow will be better. And today was good too, it just felt bad.

It’s hard to have this blog still exist.  I recently became a blog-writer-denier, in front of someone I had just met.  I don’t want people to know anymore and I don’t want to write very much anymore.

When I was in the third grade Mrs. Long had us write essays about what we’d be when we grew up.  I wrote that I wanted to be a writer.  I was already a voracious and mature reader, and my parents encouraged me.  I overwrote and overwrite everything, but I can’t help it- I’m addicted.  I’m a logophile.  I write lists to start my day and I write sentences to organize my thoughts and long emails I have to cut down (but don’t).  I doodle words when I’m on the phone, admiring the shapes that represent the sounds that conjure up images.  It’s like magic.

I loved writing.  I used to write prolifically.  I would write on this blog every single day.

On May 10th 2010 I gave birth to a baby boy.  I helped the nurse change his diaper through little openings in an incubator and read him The Hungry Little Caterpillar and got to hold him against my chest, twice.  (I’ve written these sentences over and over and over for five years now.) Then I started writing about it.  As I was going through it, from inside the hospital I started writing how I felt on this blog.  For years I wrote everything here- from the physical pain to the horrible secret thoughts.  But five years is a long time for other people.  The people who were there back then might think you can’t get over it, and the new people…well it does’t seem fair to subject everyone to all of it.  Everything in my life has changed in these five years except the sadness.

It’s impossible for me to write anything new about what happened.  One of the most consistent sufferings of a writer is the guilt of not writing enough.  There’s always more to write.  And there’s always more a person wants to write about grief.  It changes so dramatically and seeps out so unexpectedly.  A few nights ago it appeared as humiliation.  Another time it was fuel for aggression and triumph.  Usually it’s loneliness.

The loneliness is easy to redirect because my joy for life and shattering sadness are not mutually exclusive.  I never need help looking on the bright side: I live on the bright side.  I just have a summer home on the dark side.

I am self conscious about how sad I will always be sometimes.

On May 10th 2010 I gave birth to a baby boy. I helped the nurse change his diaper through little openings in an incubator and read him The Hungry Little Caterpillar and got to hold him against my chest, twice.

He was alive and he was his own self. That’s the sentence I would say if I could.  That’s what I would tell people.

In anticipation of getting pregnant, many women take prenatal vitamins, get their body in shape, and do other shit I don’t know about.  I imagine there is a lot of sitting beside windows flooded with sunshine while holding their bellies and feeling serene.  They probably get professional photos taken of themselves and get pregnancy massages.

I act out.  If my acting out was described as a mathematical equation using literary references instead of numbers it would be something like  <<Hunter S Thompson + Oscar Acosta (Dr Gonzo) raised to the power of Bukowski divided by Tim O’Brien = One scared white lady about to jump off a really high cliff>>

Obviously Oscar Acosta’s disappearance shouldn’t be ignored.  And I use Bukowski instead of Hemingway because I think his demise was both incrementally spectacular and more subtle than Hemingway.

I am very grateful to be loved by a group of people who monitor my behavior without making me feel oppressed or weak.  I am already usually in a state of embarrassment and horror about the things I do.  The embarrassment isn’t just about the all apology notes I owe to people who were sucked into and then spat out of my acting out storm system.  It’s about the disparity between what people see in me and what is really there, underneath.  Close up – if I let them – a few people can see the sloppy stitches and the too many layers of White Out.

If something goes wrong there’s no escape hatch this time.  Hazel is here, and she and Tom need me.  I can’t disappear, or have a nervous breakdown, or.  I kept my shit together last time because I wasn’t ready to throw in the towel after one tragedy.  I’ve got too much pride in my intellect and understanding of the human condition to really consider calling it quits after I lost my son.  I might have felt differently if I knew what was in store for me and my family in the years that followed.

But this time, I do know.  I know I could lose another child, I know that if the pregnancy is successful it’ll be painful and scary and complicated, I know that Tom and I both work too much, I know that the things I do to help my children could be the things they think are the most annoying about me, I know the child could arrive in the proper time frame but still not be healthy, and worst of all slash I finally understand how little control I have over any of it.

And so I keep letting the water flow through my gills.  I tap into to a level of excitement and joy and love that a lot of people find overwhelming.  I let myself be as down and dirty depressed as I need to be, but only for a specific amount of time prearranged between me and my brain.  Unfortunately grown up life keeps happening at the same time, and sometimes it all gets a little sloppy.

Soon the scales will tip and Tom and I will want a living sibling for Hazel more than we’re afraid of what we know. And then, like all the creatures on the planet capable and desirous of procreating, we’ll figure it out.  Even if the worst happens (my personal definition of “the worst” changes by the hour) I already know I’m sticking this out.  I won’t lose my shit.  I’ve lived through pain, I know it doesn’t kill a person…but I didn’t know that until I was pretty old.  Hazel needs me around at least until she has to find that out for herself, and there’s no way that I’m going to let my absence be the thing that teaches her about pain.

That last sentence is staring me in the face.  It’s mocking me, it’s saying -“You know trying to have another baby introduces the real risk that you will not survive the gestation or birth.  It’s not a huge risk, but it’s real.”  It probably makes sense to apply some Joseph Heller to the aforementioned mathematical equation.

 

 

 

 

 

 

 

 

 

 

 

 

You want to know why there have been so many remakes and variations of the movie “Freaky Friday” (including “Like Father, Like Son”, “Vice Versa” “Prelude to a Kiss”)? It’s because that actually happens all the time.  People wake up one morning in the wrong body, and they have to figure it out and just act cool until they go to bed one night, or get hit by lightening, etc etc  and wake up back in their old life.  It does happen all the time, and if you really think about it you already knew that. It’s probably happened to you.

Remember the show “Quantum Leap”?  Same basic concept.  Obviously there is a lot of romanticizing and dramatizing of the phenomenon which is why you might not have noticed when it was happening to you.  Some people look back on their lives and realize all through junior high they were in the wrong person, or their entire year abroad in college, or the summer between 11th and 12th grade.  During particularly stressful times you can get flipped in and out of other people within a matter of hours.  You look at the clock, realize it’s 6 pm and the past two hours you were just somewhere else, just trying to figure it the hell out.

I watched John Oliver interview Stephen Hawking a couple weeks ago on “Last Week Tonight”.  Stephen Hawking mentioned imaginary time and I couldn’t stop rolling the words around in my mouth.  After a few days of just saying the words, picturing them in my head, writing them over and over like a love sick teenager- I needed to know if it was Freaky-Friday-style imaginary time.

Predictably, trying to understand the actual concept was impossible.  I got three sentences into the Wiki page and had to lie down with a cold cloth on my head.  I did six or seven rounds in the ring with Google before I gave up.  I can’t even remember enough words from the articles I tried to read to piece together a joke about how little I remember of what it really means.  But when I’m not really concentrating on anything specific, those words slip back into my mouth.

Imaginary time.

In physics, it means something very very complicated.  In regular life it means waking up, or coming to, and being right in the middle of a different existence.  You know when you’ve felt like you were watching yourself act impossibly bad, or brave or beautiful?  That’s the jumbled way your brain tries to sort out the memory of it.  A lot of really hard habits to break also happen to take people to a comfortable or at least recognizable spot in imaginary time and let you just hang for a little while- like smoking cigarettes, or biting your nails, or heroin.  You can drive into imaginary time and end up at home.

People don’t talk about it very much unless you bring it up in just the right way.  Then everyone falls all over themselves explaining when it happens or where they go.  There are always a few people who act like you’re crazy, but you know those are the people who go somewhere really far.

Imaginary time.  It seems to just be a part of the human experience.  It looks best written in cursive.  It inspires mostly crappy movies.

 

There are codes that writers use to describe the way humans experience life.

“Her face crumpled”

“Her eyes filled with tears”

“Her heart ached”

These are short cuts and sure things.  It’s not laziness, it’s like spelling Lead Zepplin “Led Zepplin” so there wouldn’t be a bunch of assholes walking around saying Leed Zepplin.  Here though, I get the luxury of not caring if any of it makes sense.

Four years ago my son was born.  All of our lives flashed before his unopened eyes in five days.

Here’s what I mean to say: When I stop myself from doing something I want to do, I feel like I’m agreeing to have a rope tied tightly around my throat.  Any moment that I let my mind wander back to that thing, the rope gets tighter.  I can submit, and relax the muscles in my neck and trust that the rope will loosen with time.  Or I can panic and clutch and pull at it and bulge my eyes as it strangles me.

May 10th came, then May 15th, then all the other days.  The rope just became a part of my new life; sometimes just dangling there but most often rubbing the skin raw without choking me.

A lot of my memory is sensory based.  I remember the smell of a nurse’s hand lotion and the feel of cold steel under my finger tips and the sound of beeping machines and slaps of doors closing.  And the words.  I remember some words as clearly as I remember the smell of bleached hospital sheets.  I won’t write the words here now.

Here’s what I’m trying to say: My face crumpled, my eyes filled with tears, my heart ached…then I jumped the fuck off the bridge.  I keep landing without shattering, and the next day I know I have to get out of bed and jump again.  I’m not very different from anyone else it turns out, which I find comforting.  Every time someone tells me about a leap they took, I want to look into their eyes and see what made them do it.

Four years ago a tiny human took five days in May to change everything I ever thought I knew to be true.  His days changed every other day.  I always want it to be a happy birthday kind of day, but I don’t this year.  I don’t care if it’s a sad day, because the culmination of those five days and the following 1461 averaged out as pretty kick ass as far as I’m concerned.