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Here I am Today

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Well, this is me, February 11, 2014, 8:17 pm.

My hands are pretty shakey, so it may be a short post.  I can’t imagine having Parkinson’s.  This is really frustrating.

So I  slept 16 hours last night.  I got up at 1:44am to eat cereal (almost nightime event), and I’m not sure if I fell asleep before that.  We went to bed around midnight after watching an interesting  documentary about Stone Hendge.  It as pretty amazing.

All day I slept and slept and woke up to the clock saying 3:30,  Half an hour later, I woke up and Adrienne brought me a coke.  Strange all this sleeping.  I don’t remember any dreams.  Everything just seems blank and white.

I get up and sit in my chair.  Adrienne plays games with Stella.  I go through photos to be used as a slide show at my memorial.  We did one for my mom and everyone loved it.  Mac and Stella keep suggesting songs to be used.  Cute and sad.  I just have  find photos from the last 6 years: the time I was a man.

The girls ate delicious plates of enchilada’s brought by a friend.  I had Honey Bunches of Oats.

I fought the water heater.  I know we are in a drought.  I don’t care so much; I am going to take a bath.  Finally the water heats up.  We are out of bath anything, bubbles, etc. so I use tea bags.  Don’t think it really helped my skin, but it is helping to clear out the tea shelf.  Do you guys have those?  Teas that sound good and you say, “Really! This time I am going to drink it!” And you never do.  Well I used up four  in a single sitting.

I shaved; it had been awhile.  When I first transitioned, I thought shaving was going to be cool.  Well, I hit upon the one facial hair combination  I liked and that has been it.  I tried a full-beard once; looked too much like Shaggy. So shaving, it had to be done.

Now I’m in my chair.  I started Quinn’s letter.  I decided to dictate it; my typing is so slow.  Then I can talk longer that I would write.  I’m going to get the tape recorder (even though there is no tape) and talk to Quinn.  It’s 8:30.

 
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Posted by on February 11, 2014 in Uncategorized

 

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My Job in Heaven

“Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself…”  Matthew 6: 34

That scripture is from the Sermon on the Mount.  A very fine blueprint for living: Matthew 5-7.

 

There are many things I miss from my pre-cancer life.  One of the biggest ones is working.  I miss putting on my boots and futzing around the back yard.  I miss washing all the dishes then cleaning the sink to as bright a white as I can get.  I miss using my body.  I miss bicycling. And swimming.  And hiking. And walking.

So as half my brain has given up, “the morrow,”  I decided to fill up that empty spot with dreams of heaven.  One of the first things I hit upon when thinking about heaven was the idea of work.  Work makes me happy.  I love the physical exhaustion of a good hard day in the garden.  Why wouldn’t work be part of heaven?  I bet it is.  And if there is here is what my job would be.

I haven’t come up with a good title; although “Official Greeter” does work.  Here’s how I imagine it.  You know when you go to the airport, you stare at the big, “Departure” and “Arrival” signs?  I hear it’s that way when you are in surgery as well, although the signs say things like, “In Surgery,” and “Recovery.”

Every morning I’ll wake up and look at the arrival and departure times.  Before I explain all of it, I must tell you about one of my core beliefs.  It’s a belief that comes from my Mormon upbringing, and one I have always felt deep in my heart as true.  I believe that all spirits are together in a world called the pre-existence.  This is where we live as spirits before we are born. One of the biggest compliments you can give another Mormon is, “We must have known each other in the pre-existence.”

I also believe that the after life and the pre-existence are in the same place.  My son is crazy for my Grandpa Warren.  Grandpa died in 1983.  Mac’s feelings for him are very real.  I do think they knew each other.  So there’s where the departure board kicks in: souls heading to Earth for their turn to practice free-will and to learn to make good choices.  Maybe one morning the board will tell me that my first grandchild is about to be born.  I’ll hop on my bike and ride there to wish my grandchild godspeed and tell her again how excellent her mom, (Quinn) is.

The arrivals are the same idea; only waiting for someone to pass on.  I fully expect for my Grandpa Warren to be waiting there for me, to take me to the rest of my family.  On arrival days I may hike to the arrival point. The person arriving may be a close friend or family member; or someone I don’t even know but needs some extra cheering on.

I think the job fits me.  I’ll get to use my body to go places; under my own power! And I really am a cheerleader at heart; how excellent to cheer people on after running the marathon of their lives. And to see spirits make the leap into the unknown, ready to experience life on Earth.

arrival

 
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Posted by on February 1, 2014 in Uncategorized

 

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Caregivers Guide, Part 2

My writing seems to be more disjointed now.  I don’t seem to have the focus to work through a whole piece of ideas and conclusions.  Last night, I laid in bed thinking, trying to write when I had the perfect line come to me.  I reassured myself that I would remember it in the morning.  Of course I have forgotten that perfect turn of phrase.

A comment was made about me last night, “He is more aloof now than two weeks ago.”  So I decided to go back to the caregivers guide to see where I’m at.

My taste is starting to go.  Not many things sound interesting.  I’m really not that in to solid food.  Cold cereal is the perfect thing to eat.  Usually two of my meals everyday is some version of Honey Bunches of Oats.

The one thing I do crave is Jack in the Box chocolate milkshakes.  With fries.  Luckily the sketchiest fast food place closest to our house is a Jack in the Box.  When friends come from the east bay they bring a fancier milkshake: the coconut boba drink.

But food, I could take it or leave it.  The thing I am still most fascinated by is my response to the people around me.

I enjoy company.  In fact there’s some in my house right now.

My nurse just left.  Blood pressure is normal.  She will get authorization to up my methadone.  I have a tumor on the move in my chest.  It protrudes out an inch square on my upper chest.  A lot of new pain.  So more methadone, less morphine.  Excellent.  Pot cookies?  No problem.  Hospice is really great.

But sometimes company can leave me very tired.  It’s hard to know when or who might be that tired company.  In my past,  I would have never left a tired conversation.  Now I can.  All the talk about conserving energy is true.

Yesterday the thought came to me that I never thought I would express: Too Many Words.  I love words, and there are probably more than a few of you have gotten into a tired conversation with me.  My mom always told me the I had, “diarrhea of the mouth.” I think in words.  I write in words.  I love words.  Too Many Words?  I guess so.  I enjoy the quiet in my mind and around me.  Words and noise feel obtrusive and abusive.  So I try to withdraw from both and keep the quiet encircling around me.

So that’s where I am.  Not eating much, but enjoying what I do. And the quiet, trying to find it whenever I can.

milkshake

 
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Posted by on January 27, 2014 in Uncategorized

 

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January 24th, 2014

My sister, Yancey is in town.  She’s coming every two weeks now.  It is amazing to have her puttering around my house.  Why amazing?  Because when I think of family, I think of her first.  To have her here is grounding.  Because her spirit and personality are attached to this earth and to me in a very personal way.  So she putters, she’s off getting the kids and then to the store for every craving I may possibly have for food.  I forgot tapioca on the list, better text it to her.

Annette, a dear friend, came over to read to me.  Reading is way beyond me now.  She wanted to read some of, “Conversations with God.”  I never read the books when they were released.  I am very interested in God and prayer and gratitude these days.  And so we read, and we talked.  Ever the Italian stereotype, Annette got me to eat some cheese and crackers.

I started to think about tiny babies.  You remember yours, or ones you have held.  Maybe not everyone, but I pictured the little nerve processes going on in little Quinn’s head.  I would look into Mac’s eyes and say, “I am someone to you.  I love you.”

And I ponder on having those experiences with my own parents.   They mean everything to an infant.  Now I find myself undoing my own connections.  Not in a “running and hiding,” kind of way.  It’s more personal: I look at each little nerve and the connection is has to me and this planet.  And then I quietly snip it.

 
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Posted by on January 24, 2014 in Uncategorized

 

January 21st, 2014 (Stella)

Today was a mellow day.  I heard the front door slam when Adrienne went to pick up Stella.  I figured 1:30 was a fine time to get up.  Brushed my teeth, took some Morphine, then went down to procure an icy cold coke, (really 5 or so icy cold cokes).  I got settled in my chair with the coke, some chew, and my laptop.

Tears were rolling down my cheeks as I read all the new comments and messages from friends and family.  Not sad tears, instead, very joyful thoughts of gratitude and humility.  But this post is not about that again.  This post is about my 9 year-old daughter, Stella.

Adrienne and Stella rolled up in the 65 Chevy truck.  Quickly Adrienne disappeared upstairs.  After the years we have spent together, I know that when Adrienne vanishes like that, she is not wanting me to follow with, “Have I done something wrong?  What can I do for you?  Thank you for everything.  And on and on.  She needs me to leave her alone; maybe check in just so she knows I am thinking about her.  Today was one of those days.  Adrienne is under as much as, probably more, stress than I am.

Now, Stella and I don’t always get along.  And mostly that is me.  I hate to even admit it.  It’s hard to explain.  I think some of her mannerisms remind me of girls I didn’t care for.  Maybe it’s that even though she has Quinn and Mac, she was an only child for quite a while.  I’ve been working at remembering that Stella is not blank or blank, (no I won’t name names), she is Stella.  And if you have ever met Stella, you know that about her.

So I’ve been working on it.  When Adrienne went upstairs, I decided I would hang out with Stella.  She ate a snack.  She talked about school.  We talked a lot about how boys could be dumb, and in not dumb at math.  Stella told me that she thought it was cool that I was a girl when I was young so she could talk to me about this stuff.  I also explained to her that even though I was a girl then, I still watched all the boys and decided how I would be a better boy then they were.  Again, no names.

The only time her big blue eyes, (inherited from her beautiful mother), glistened with tears is when we talked a little about cancer.  She described to me her scariest daydream: that she would be dropped off in the morning, and then she would learn about my death at school.  Would kids who were normally mean to her be nice to her?  She hoped so.  That almost brought tears to my eyes.

I looked in those blue eyes and told her the truth; she would never learn of my death at the bottom of the hill after school with someone other than her mom picking her up.  I explained to her the stages of dying and we’ll be able to watch the signs and know when I have even just a few hours left. I need my kids to know that as well.

Towards the middle of our conversation, I called her closer to my chair.  I held her hand and looked her in the eye and told her, I want you to know how much I really love you.”  She smiled and said it back.

Our talk turned the Super Bowl, music, and she showed me a great video of Pharrell Williams singing, “Happy.”  Check it out if you don’t have pre-teens.

Adrienne got up.  I went to the tub to write this all down in my head. It was a very productive day.

stella lego

 
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Posted by on January 21, 2014 in Uncategorized

 

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“Don’t Give Up”

 

This is the angry post I wrote last Wednesday.  I still don’t feel like today is the day to post it; but I know the longer I wait, the less likely it is that I will ever put it up to be read.  I think it is an important document.  In the next few days, expect a post about the the best weekend of my life…  Jay

 

I got pissed off today.  Although I was quiet about it.  I’ve been working on a version of this topic for awhile, but today’s conversation helped me finish it.

“Do you know about or are you considering alternative treatment?”  Of course I know about alternative treatments.  I know you can go to Mexico and hang out in a beautiful resort having coffee enema’s.  I know you can go to a place in Utah where you are put in a box, (probably looks like a coffin), and your body is heated to dangerous temperatures.  Why do that?  Because the heat will kill the cancer cells.  Rubbish!

Food is a big part of the alternative treatment.  I’m sorry but kale is not going to cure my cancer.  Neither is breastmilk, which I have been offered.  I do believe there are foods that  will help to prevent cancer, but I don’t believe any combination of food would kill the giant tumor growing in my lung.  So as my appetite lessens, what do I eat?  Lots of cold cereal.  It is the perfect food for me right now.  Adrienne bought me a wide variety of cereals.  I’m happy I can still eat!

Number 2. I have had many well meaning friends say to me, “Don’t give up,” and “never stop fighting.  This is your cue of what not to say to people who are dying.

First let me tell you about “don’t give up.”  My body is not giving up.  All of our bodies make decisions about what parts to send blood and oxygen to and which processes can wait.  Mine is doing that now.  My energy is being conserved by resting and sleeping.  Soon, other actions will slow; but my body is not giving up; it’s fighting to keep me alive, (Cue “Eye of the Tiger”).  I’m pretty impressed with my body.  Did you know that hearing is the last sense you lose?

Second, “Don’t stop fighting.”  This is statement makes me livid.  In the last three and a half years, I’ve done nothing but fight.  When I was first diagnosed, I would end up on breast cancer boards.  All the women followed their names with a list of what kind of cancer they had and the treatments and surgeries they endured.  I thought it was weird.  Now I get it.  Your list shows how brave you are; how much you have fought through and how you are still fighting.  I love to write mine.  Here is a short version:

Four surgeries, one ending in a permanent colostomy, one ending with me losing a big chunk of my chest wall and three ribs.  I’ve lost track of how many chemo treatments I had.  Somewhere in the low twenties.  If you add up all the time spent dealing with side effects, that is a lot for a body to deal with.  Fifty five radiation treatments.  Twenty five on my ass.  Even with the tumors growing now, that time was the most pain I have ever felt in my life.  The other thirty were aimed at my chest.  I have the tattoos to prove it.  Here’s a few more: three port surgeries, two colonoscpies, two other hospitalizations, countless blood tests, scans, mri’s, a PICC line…

So there is my list.  Besides the eight months when we thought I was cancer free, the last three years and seven, yes seven not six, months, I have been in some sort of treatment.  I have fought for every day of every week, especially for the last two years.  Soon I will fight for every hour of every day, but I will still be fighting for a little bit more.

Phew.  Then I sat in the bathtub and thought this through.  Whenever someone says these things to me, I have to do a whole self inventory to make sure I didn’t give up.  That’s tedious.  I know I never gave up.  I accepted what was coming.  Now, I’m not here to psychoanalyze anyone.  But it seems fear of death may have something to do with the comments I hear.

I believe the dates of our deaths are set.  I’m not running from Mr. Death or the grim reaper.  As the Earth rotates, my date and I move closer together.  Not to be a party pooper, but it is happening to all of us.  I am not scared of my date.  My body and I will keep fighting until we meet. And the timing will be perfect.

 
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Posted by on January 20, 2014 in Uncategorized

 

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“Thank You” doesn’t feel like enough

Yesterday, I wrote an angry post.  I’ll put it up tomorrow; today is not an angry day.   I woke up at 11:30 to an icy Coke, a kiss from Adrienne and an inbox full of amazing messages.  And to top it off, lots of profile pictures on facebook had been changed to a picture of me.  I feel like a rock star!  A delivery of Methadone came this morning, so I skipped the addicted to heroin rock star part and went straight to Methadone.

How to say, “Thank you?”  I don’t think I can express it through words.  Thanking all of you for your love and support doesn’t seem like nearly enough.

Remember in my last post when I talked about losing interest in activities?  One thing I haven’t lost, but in fact, gained interest in is writing.  In looking back over my life, I believed that my kids were the amazing thing that I had left this world.  My ex and I always said our main parenting goal was to not unleash any more assholes onto the planet.  Funny, but it’s so much more than that.  My children have big hearts.  They are open and giving.  I couldn’t be more proud of them.

But now, there is this blog.  Which has become something amazing.  I always wanted to be a writer; and now I am.  I write something that is meaningful to people; even people I don’t know! Makes me feel very humble and grateful.

So, the writing will continue as long as I can produce the words.  I am going to change it a bit.  If you see a post titled with a date, that will be more of a journal entry.  There are a few reasons for that.  First, for those of you who want to know how I am doing, those posts will tell you that.  Second, I am so interested in the process that my body and mind are going through, I’d like to be able to go back and see my progress, (funny thing to call it).  And lastly, as a document my kids can read later, and if my book ever gets published, those little notes may be helpful.

If you see a post with a title, that is an essay on a specific topic.  There are still lots of them floating around in my head.  That’s were I do all of my writing.  I sit in the tub, or lie in bed and write in my brain.  When I feel the article is finished, I type it up and post it.

I feel very honored.  In the waning days of my life, I get to continue to be a parent and a writer.

Thanks for reading,

Jay

brs

 
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Posted by on January 16, 2014 in Uncategorized

 

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