Chest wall resection and reconstruction

That’s the answer I gave to the question, “And what are you here for today?”

Terrie and I had been through this before.  She is a nurse in the pre-op ward at Queen of the Valley Hospital.  3 lung surgeries in just under a year; people know us.  They ask after the kids.

The surgeon comes in, opens a new marker and initials on my back where the offending tumor is. “Now, you know, Jay, I am going to have to remove one rib, possibly two, to get the margins?”

Leading up to the surgery, I had heard, “possibly remove a rib.”  Not, “have to.”  But okay; a rib removal makes for a great story, and a funny blog post:

“Just Call me Adam”  after removing the rib, I work to create the perfect Eve.  And she is…(fanfare, drumrolls, fireworks), Adrienne Waterman.  Cute, huh?

Adrienne leans over and kisses me goodbye.  “See you tomorrow, baby,” I say.  Historically, my last two lung surgeries have had me knocked out with a breathing tube down my throat for 24 hours.

Sometime in the early afternoon, Dr. Kanaan stands over me.  I am confused.  “You are in recovery.  The breathing tube is already removed.  I took out 3 ribs, 5 cm of your chest wall and a few little satellite tumors in your lung.  Good job.”

There goes my blog post; although I’m sure there is a Mormon joke in there somewhere.

Adrienne is shocked to see me with my eyes open the day of surgery.  We talk.  I am coherent  to talk to my kids and to my sister.  I eat hospital ice and jello (insert another Mormon joke).

Usually, the chest tube hurts like hell and it comes out the day after surgery.  It needs to stay an extra day.  They move me from ICU to the main floor.  The nurses recognize me. I have an epidural.  I barely notice the chest tube.

In my last post I wrote about, and under the influence of medical marijuana.  Lying in my hospital bed, I think about writing under the influence of morphine.  Too bad I couldn’t just tape my crazy hallucinogenic morphine dreams.  So, I don’t write, I just think about words.  I think about reading, but David Foster Wallace doesn’t seem remotely coherent.

The epidural comes out.  The doctor tells me that there is a new pain medication that is placed inside of fat cells and then deposited right inside the wound.  It is amazing; until it wears off.

Having a chest tube removed is painful, no matter the medication.  I talk with the surgeon’s assistant.  “How do you remove the ribs?  With a saw?”  I had it in my head that only the ribs in the back would be gone.  She replies, “Well, since they are floating, we remove them from the sternum.”  Shit!  I have no ribs in the front either?  Numbers 5,6, and 7, gone.  It’s no wonder I can’t lay on my good side; gravity is pressing down through my skin straight onto my internal organs.

My ribs have been replaced with flaps of Gortex.  Yes, Gortex.  The surgeon says it gives the best protection and range of motion.

So in the past 3 years, I’ve lost my ability to poop out of my butt, my future as a marathoner, my boxing ambitions, but worst of all, my top spot as “Dad, child wrestler.”

Friday morning, I go home.   The kids are clingy, emotional.  Everyone is on edge.  By Sunday I am feeling horrible.  Fever; sweaty, freezing, sweaty, freezing.  We watch a movie.  I talk the kids down one more time and fall asleep.

I barely remember kissing them goodbye on Monday morning.  By 9 o’clock, I am in the bathroom throwing up.  All day Adrienne tempts me with food.  I throw up some more.  She calls the doctor.  “No, fortunately it’s not the surgery, it’s a bug going around.  I’ve had it the last 36 hours.”  So it’s his fault.  I sleep and sweat all day.

Yesterday morning I pryed myself out of bed and took a shower.  Simple things become monumental; reaching for the bar of soap, washing my hair, being steady enough to get out of the old claw foot tub and dry off.  I put on clean clothes and burst into tears.

Now, I don’t like to write about crying.  And it’s not a manly thing; how often have you known me to be manly?  My phobia about crying and writing came from 2 different books.  Both memoirs, both written by intelligent women.  The number of times they both wrote, “I cried,” took away all the power of their tears.  If they cry that often, does it mean the same?  I have friends who cry.  It’s real.  I see it.  But reading about it isn’t the same.  So, me bursting into tears and writing about them streaming down my bloodshot eyes; it means something.

It happens every time.  I hit a day about a week into my recovery and I feel like I can’t go on.  I can’t bear to have my body cut open again.

Adrienne brought me cheesecake.  I went downstairs for the first time in almost 48 hours.  The panic started to subside.

In the past, this post would be neatly zipped up with something about my kids.  And seeing them yesterday did help.  However, it was something my sister texted me that made the difference.  She thanked me for going through all of it; the chemo, surgeries, radiation, all the things that have kept me alive.

And then I realized, I have been given a choice.  The choice is mine to make every time.  I choose life for myself and for my family.  And the past year, the time I was to be dead, has been amazing.  I got married, my kids all had another round of birthdays, I finished my book.

There is the zipper; having a choice.

 

And then I got high…

“I should get a medical marijuana card.”  Two and a half years ago.

“I really need to go and get a card.”  Last year.

“Today is the day!”  Two weeks ago.

It was a Friday morning.  The kids had been dropped at school.  They weren’t coming back until Sunday.  Adrienne and I sat outside, drinking coffee, reading the paper, and talking about our kid-free weekend.  There was a picture on the front page of our newspaper, “Police to return confiscated weed and plants.”  I turned to Adrienne, “Today is medical marijuana day!”

We live in a town full of dispensaries.  For some reason, a whole bunch of them are bright pink.   First, we need a prescription.  We first stopped at a “Dr.’s office,” that some friends had told us about.  “The doctor won’t be in until May 10th.”  She gave us a card.  “I’m not waiting until May 10th,” I cried.  “I want my medical marijuana now!”  Okay, I really wasn’t Veruca Salt.  But if I was going to cross that line, I wanted it to be now.

Maybe a little backstory.  Only twice in my life had I ever gotten high.  I hated it.  All I could think both times was, “I just want to feel normal!”   And Adrienne’s experience is similar to mine.  We are green when it comes to weed.  With the latest tumor scheduled to be taken out tomorrow, I have been in a fair amount of pain.  The tumor is growing in between my ribs.  I’m tired of painkillers.  They take away the pain yet make me crabby and irritable. I was ready to make the leap. And even though medical marijuana is legal in California, the whole process did feel a little shady.

Adrienne mentioned the place down the street that always has a sandwich board reading, “The Doctor is in.”  The office is in an old  downtown building.  Built at the height of architectural beauty and staying power, 1962.  There is a waiting room.  There is nothing on the walls.  A table holds slick cards from dispensaries, and some newish looking magazines.  We talk to the woman behind the glass.  She gives us papers to fill out.  The doctor will be in at 11:30.  We have time to go get my medical records and  cash… they only take cash.

I go in to meet the doctor first.  I sit in a chair and stare at a laptop.  “The doctor is in” Anaheim. Finally, his face pops up.  I tell him I have stage IV cancer.  He asks about surgeries, signs, and I’m finished.  The woman behind the glass; I get to sit with her this time.  She tells me it’s $65 for just the letter, $85 if I want a card.  I pay for cards for Adrienne and me.  We tell the woman how we know nothing about pot.  “You two are so cute!” she says.  She tells us which dispensary she uses to get her own medicine, we take our cards and head down the street.

The building is pink.  But no parking in the front.  I  pull the car in to the alley and we go in.  We hand away our new pot cards, our papers, and our driver’s licenses.  Approved, our papers are given back and we are shown into the room with the goods.  We tell the young guy that we are looking for something with high CBD (pain reliever) and low THC.  We are dorks… “Uh, how should we smoke it?”  “Joints,” he replies.  Now there is a reason why I never rolled my own cigarettes.

“And since you are new clients, and you’ve come to the place with the best medicine, (there is a lot of medicine talk), you get a free gift.  You can have some edibles, a joint, or a hit of wax off of this bong.”  I decide on the bong.  “Oh, man, if you have pain this will be the best.  I once saw a crippled looking woman take a hit of it.  She stood up straight and walked right out of here.” He lights it and I take way too big of a hit.  I cough.  He brings me a cold bottle of water.  Adrienne starts talking to the three men there about growing our own. And then all of a sudden; I got high.  Really high.  I leaned over to Adrienne and told her I really needed to go.  “How’s your pain, buddy?”  “It’s gone,” I replied.

High CBD but through the roof THC. I lay down on the couch.  I was trying to enjoy myself, but I had to play sociologist or anthropologist and analyze the whole experience.  “My nose is itchy.  Should I scratch it?”    Even the idea of forming a sentence seemed way too difficult.  I decided I would write.  The shit I was writing in my head was hilarious.  “Come on Jay, get up and get your computer.  This stuff is sooo funny!  You have to write it down!”  No worries, I never did get the computer.  I started thinking that I could type with my eyes closed.  Maybe the best thing I learned in High School.  And did that typing teacher have skin cancer?  He always seemed to have a Band-Aid on his nose.

So this is why stoners are called burn outs!  I finally made my way back to Earth. Now our mission was to find something that was not so high inducing.  And we needed a bong.  Rolling joints was not happening with much success. At another dispensary, we were given chocolate chip cookies as our “new patient’s”  gifts.  Edibles are dangerous.  I ate half a cookie, swore it wasn’t working then ate the other half.  I was  dizzy all night.  And the only paranoid thought I had was, “I don’t even know who made that cookie.”

The weekend was filled with experimentation.  “Do you feel anything?”  Adrienne doesn’t feel anything.  I meanwhile get high every time I try.  We went to a smoke shop and bought a bong.  “For flowers or oil?” the man asks.  We choose one and come home.  I figured it out.  Enough to help with the pain from the tumor, and just enough THC to feel mellow.

Well, I’ve got to run.  I can’t eat after midnight tonight so I’ll need to start my cheese puff munching now.

 

First Book

The last few weeks have been eventful.  I turned 45.  This year, my birthday was mellow.  Last year, I had a big party in our backyard.  At the time, it seemed unlikely that I would celebrate my 45th birthday.  It’s good to be in the place where you round up to 50.

Another tumor was found in my right lung.  I knew it was there; and it has been since late January.   In 9 days, I’ll go to Queen of the Valley Hospital for my 3rd lung resection in a little less than a year.

The best news though, is that on April 25th, I finished the first draft of my book.  Back in September, I wrote a blog post called, B-O-O-K, committing myself to finishing a book of stories from my life.  Now it is in the hands of 3 friends and my sister.  55k words, 288 or so typed pages.  I have spent a lot of my life starting projects, projects as simple as, painting the kid’s bedroom to as grand as a finally finishing my B.A., and often, the projects are undone, unfinished, forgotten.

This time, I finished.  With the recovering from my many surgeries, writing has been the one thing, (besides parenting), that I can do and not hurt myself, well, physically, at least.  Now comes the hard part for me; accepting constructive criticism and re-writing.

You know what?  This isn’t my first book.  When I was 7, mom dropped me off at the library for story time.  The project that day was writing your own book.  I picked a pre-stapled book with a red construction paper cover.  I titled it, “Mr. Meyer’s Bike Ride”.  I added a title page and a table of contents.  The story basically followed Mr. Meyer’s on his awful ride to work.  He was stopped by a policeman, he accidently hit a cat, he had to wait at a long stop light.  And then the time was up; I never even knew if Mr. Meyer’s made it to work.

The books were judged by the librarians.  I won.  As a prize, I was given a book with a rabbit on the cover.  You would have thought that book was a Newberry Medal.  Even though I had no interest in reading it, the yellow paperback sat on my bookshelf for years, reminding me that I had won a writing contest.

But, you know, triumphs from childhood often get forgotten.  The joy that came from that little contest faded, and I never thought I could be a writer. In 1996, I tried my hand at it again.  I wrote silly little essay’s about my friends.  I wrote a few short stories.    Hundreds of letters, (at least it seemed), were sent out with manuscripts.

2 pieces I wrote were published.  On a Sunday morning, in 1997, Erin went off to work.  I decided to drive in to town for the Sunday paper and a 6 pack of Coke.  I sat in the sun and read the paper cover to cover.  About 3/4 of the way through, I turned a page and saw my name.  There, in black and white was a little essay I had written about coming back to Oregon. The paper had never contacted me to let me know it was going to run.

6 months later, Erin and I had moved to Madison, Wisconsin.  I went out to get the mail.   There was a copy of “The Lesbian News”.  A story I had written about Wonder Woman had been published.  I made $50.

With the arrival of 2 children and no time at all to spare, writing again became something I didn’t think I could ever do.  And then I had my first lung tumor removed.

I was sitting in a chair in my hospital room, waiting for Adrienne.  Finally, I got a text, “Sorry I’m running late.  I started a blog”.  A blog?  One of those wanky, self-masturbatory exercises in writing?  Okay, I was wrong about blogs.  Adrienne convinced me to start my own.  “It will be a way for you to write small pieces and not worry about a whole book,” she told me.  She was right.  My first post, “Chasing the dog” was easy to write.  Small and contained.

So maybe I am a writer.  I think about writing all the time.  My mind is constantly full of words, refining my stories, writing lines and thinking of new things to write about.   Having cancer has been an experience that is hard to put into words, but it has brought me to a place of being able to finish a manuscript that was only in my head.  And finishing something so grand feels epic.

 

Cliché and Silver Linings

I am not a fan of the cliché.  Or for that matter, buzzwords, and over-used phrases.  When I’m writing or speaking, I do my damndest to avoid them.  But occasionally, I find that a cliché is the phrase that fits the situation better than I can say in my own words.

This last weekend was spent with a visit from my sister.  We threw Quinn an excellent Hogwarts party for her birthday.  8 kids hopped up on “Honeydukes” candy and a dinner party in “The Great Hall” of our decked out basement.  Early on Sunday morning, I drove Yancey to the airport.  Then the panic hit.  My chest has been incredibly sore.  I was convinced that a giant tumor, the big one, the killer one, was growing out of my lung and into my chest wall.  Driving alone in the early morning light, I started writing the words I wanted read at my memorial.  I slipped down the death path as quickly as my car was traveling the empty freeway.

We spent the afternoon at Erin’s house.  Erin is my ex-partner, and the mother of my kids.  We helped her plant a vegetable garden.  Being out in the dirt, clearing the spot and putting in the small plants that will become food for them lifted my mood.  Life is everywhere.  All it needs nurturing.

Like the path my mind has taken so many times through this whole cancer ordeal, I righted myself and remembered that every extra day I have is worthwhile.  I’ve already had more time than any of my doctor’s expected.  On the drive to the oncologist’s office to get the results from my blood work and chest x-ray, Adrienne and I discussed the life that is overshadowed by cancer.  Tumors inform everything: from kissing the kids goodnight, to planting seeds, to having sex.  Cancer makes everything feel desperate; but also special and worthwhile.

Inconclusive.  My CEA number is up from 11 to 13.  I was expecting 23.  The x-ray doesn’t show anything, just a thickening of the pleural, (the lining around the lungs),in the spot that has been sore.  A PET scan to be scheduled.  We discussed options.  There are new drugs.  There is always chemo.  More waiting.

Again my mind sent me to a place I didn’t need to go just yet.  I left the office feeling exhausted and relieved.  No need to plan my memorial.

Back to clichés.  I wrote for my facebook status update: “Inconclusive.  Not as good as clear, but better than worse.  There is a silver lining to everything.”  Then I got thinking about “silver lining”.  I looked it up.  Originally from a 1634 poem by Milton.  My poetry deciphering skills are really out of practice.  I’m not sure what he’s saying.  The way we use the term today comes from a book review published in “The Dublin Magazine” in 1840.

“There’s a silver lining to every cloud that sails about the heavens if we could only see it.”

Cancer can make every cloud seem dark and foreboding.  But inside those black clouds are kisses goodnight, little seed sprouting and love.

 

REM as Therapy

Most of you who know me are well aware that REM is my all time favorite band.  Growing up in a small town with only a bigger smaller town near by, choices for music were not grand.  On the radio you could hear country, classic rock, lite rock and top 40.  That all changed for me when my best friend Gina’s sister, Theresa started making her tapes.

Bands that were different.  Bands unheard on the radio stations of the Willamette Valley.  New Order, the Cure,The Replacements, The Psychedelic Furs, The Crazy 8′s, and REM.

The tape that I borrowed from Gina had REM’s “Reckoning” on one side and The Psychedelic Furs on the other.  At the time (1984), my Mom had a nervous breakdown and sent us to live with my Dad.  He lived with his girlfriend, who really is the definition of evil step-mother, and a bunch of dogs in a tiny cinderblock house by the river.  Our clothes were in dressers in the carport.  My brother slept on the couch in the TV room and my sister and I slept on the pull out couch in the living room.  I’d put on the homemade tape and listen to the words, (the ones I could understand; Michael Stipe wasn’t enunciating much then), and somehow my miserable life would drift away.  It is still my favorite record of all time.

REM has carried me through my life. During my divorce and gender transition (They went hand in hand), I listened to the song, “Hollow Man” constantly. REM finally broke up last year.  Friends sent their condolences.

I saw them many times in concert.  Once I even won tickets through KFOG to enter the arena early for the sound check.  Pretty excellent.  Another concert I was 5 months pregnant with my son, but my best concert moment was in St. Paul.  An outdoor summer concert.  During the encore the thunder started and the rain poured down as they played, “It’s the end of the world as we know it”.  Unbelievably excellent.

I have bunches of REM t-shirts.  My favorite depicts the band members with Homer Simpson.  I’m not too proud to say I wore that one to the sound check.

Maybe it’s the lyrics, maybe the melodies, probably because I discovered them at a crucial time in my life.  I’m not a crazy fan; I just love their music.

If you read my last post, you know I’m in a down place.  I slogged through today.  I worked on my book, cleaned the kitchen, cut some lumber for the new chicken run Adrienne is building. I consoled my crying daughter; one of her best friends is leaving her school.  I helped Mac with his homework.  Overall, a normal day.

I dropped the kids at their Mom’s house.  I came home to Adrienne cooking dinner.  I put on “Automatic for the People”.  I haven’t been listening to much REM lately.

I’ve heard every record so many times, I knew that “Everybody Hurts” was coming on after the scratchy pause in the vinyl.  REM got a fair amount of crap when they released the song.  “Too cheesy.”  Well, maybe it is, but I closed my eyes, listened to the words and felt the dark shadow in my brain release a little bit. (Here’s a link to the video: http://youtu.be/ijZRCIrTgQc) I played the record through, then picked out another one, “Fables of the Reconstruction”.

Now I’m listening to “Reckoning”.  I first heard it when I was 16 years old.  The rising crescendo of “S. Central Rain” still gives me goosebumps.

Forget alcohol or therapy, I just need a good night sleep and some music that makes me feel like home.

 

Bucket List

I fucking hate the term, “bucket list.”  For those of you who use it, and consciously put things into the imaginary bucket, I’m sorry, but bucket lists are for the living.  I am on the verge of dying every few months it seems.  New tumors, more surgery, talk of treatment, trips to the lab to have my blood analyzed, appointments with the oncologist, and long nights where the fear is so palatable Adrienne can feel it reaching from across the bed.

Dying is a fact of life.  Parents, Grandparents, Aunts, Uncles, pets, and the saddest of all, children, all die.  A reassuring thought for me has been one that anyone can die at any moment.  For some of us, that any moment won’t be a car accident, or a random act of violence, it’ll be something that is growing in our own bodies.  I live with that every day.  I kiss my children, I hug Adrienne, I pet the dogs, the cat sleeps on top of me and I try to enjoy all of it.

Last night I was panicked.  My right lung is still very sore.  Sometimes it’s hard to breathe.  I can feel the congestion low in the back of my chest.  I try to cough it out, but I can’t cough hard enough.  I get up and take Ibuprofen.  The little brick-red pills don’t allow much relief.  I try and tell myself that it’s still inflammation from the radiation.   I don’t believe it.  After so many tumors I can’t convince myself that this new pain isn’t one.  I’ve come to know my body pretty well over the past 3 years.

My list, which has nothing to do with a bucket, has very few things in it.  When every minute seems to count, going to London to shop for records doesn’t rate high on the list.  In fact, it’s not even on the list anymore.  What I do want are simple things, time with my kids.  More time than I probably have.  I want decades with Adrienne.  I feel I’ve waited my whole life to meet her; I don’t want it to be over after only 4 years.

I want to go to Utah.  Next week, we’ll be there.  Adrienne has never been to Southern Utah.  I want her to see the tunnel in Zion National Park, the Delicate Arch in Arches, and the petroglyphs of Canyonlands.  I want to walk on the BYU campus and remind myself how far I’ve come.  We’ll see the house where my Grandma was raised, the apartment buildings I lived in, and the big “Y” on the mountain.

20 years ago my girlfriend Sarah and I went on a 6 week long road trip through Utah, Arizona and California.  We hiked a couple of hundred miles on our adventure.  Now I’ll be one of those tourists that maybe get a mile off the main path through the parks.  I’m too tired these days to do much more.

The only other thing in my not-a-bucket list is to finish my book.  I’m close to finishing the writing part, but then there’s the editing.  Of course I want it to be amazing, but I worry that I won’t have enough time to finish it.

For some reason, I have tied my mortality to these last 2 things.  I know it’s silly.  My family needs me more than the world needs another memoir.  Being a parent has been my greatest achievement in a lifetime where I never stopped feeling that I needed to be something more.   Quinn and Mac are an amazing legacy.

When I have days like today, I trick myself into thinking that working on my manuscript just brings my death closer; ridiculous.

The one thing I would put in the not-a-bucket, which will never come to pass, is a cure for this awful, life-destroying disease which haunts me every moment of every day; and every night.  I’d like to look at my children and know I’ll know them as adults.  I’d like to sit in the garden with Adrienne when the gray has taken over all the black in her hair.  Maybe selfishly, I want to see myself go on a book tour instead of imaging my memorial.   I want to live to see the future.  A future where I have the luxury of a bucket list.

 

Crying Wolf?

The news wasn’t horrible; it was ambiguous.

As is always the case with late afternoon appointments, Dr. Ari was a half an hour late.  The door hadn’t even shut behind him when Adrienne blurted out, “What’s the news?”  He sat and explained why he hadn’t called back to tell us the numbers.  I got his point; sitting in the same room, reading each other’s body language and discussing the options in person, does make more sense.  What it doesn’t do is take away the last two days of dread.

My CEA number is up to 11.  Not crazy; just up.  He explains that sometimes inflammation can cause the number to rise; it’s not a perfect test.  The pain I’m convinced is a tumor?  Could also be inflammation.  He reminds me what my right lung has been through in the past 3 months.

I like a lot of Dr. Ari’s practices.  The one I appreciate the most is his honesty.  “I don’t know what it means”, he finishes.  We talk about options.  My lung is still healing; the CT or PET scan results would be hard to read.  Dr. Ari throws out a few  ideas.  The three of us decide that waiting a month and retaking the blood test is the right answer.  If the number is higher, a scan will show the tumor.  If it’s lower, well, I still may be the miracle man.

We came home to a cake.  A friend picked up the kids from school, took them to the library book sale, and then they baked us a cake.  Quinn made the chocolate butter cream frosting herself; just like I taught her; and the way my Mom taught me.

After the three of them were finally asleep, Adrienne and I sat on the couch.  I felt raw; my insides having received a once over from a cheese grater.

“Did I cry wolf in my last blog post?” I ask.

Adrienne considers my question then replies, “No. You provided insight into two days in the life of a cancer patient.”

She’s right.  We have been through this so many times over the past (almost) 3 years.  The highs and lows, the fears and elation.

So we’ll live with the ambiguity for another month.  We’ll plant the summer garden, I’ll work on my book, maybe I’ll finally finish painting the kids room, and at the end of March, we’ll go to Southern Utah for our belated honeymoon.

And my brain knows what to do: be grateful for everyday I get to spend with my family.

p.s. Thank you to all of you who pray for me, think good thoughts for my family, and follow my story.  Some of you I’ve known since kindergarten, some I don’t know at all.  It makes me grateful for the connectedness of humans.