The Light and Shade of Things

Fifty

The levels haven’t gotten better.  Some days are filled with such pain I can’t explain it other than to say “you have to have been there”?  But in the past I would have done anything possible to make sure no one ever knew how this feels.  The physical stuff I learned to deal with years ago.  Sports taught me how to cover up minor stuff, being an asshole taught me how to cover up the rest.

Some days I pray that the cancer will just win and a nap turns into something permanent.  Guilt gets a large opening on those days.  The lose of control over my life isn’t who I am.  Long ago I accepted the narcissistic qualities of who I am.

Now I need lots of help to get through the days.  Some of it for little things you don’t even consider.  Every now and then not being able to get a glass of water?  The hallway is just too long.  I’m not used to having to sit on the floor to just let my body catch up with my drive.

Watching the sun rise through the window is still a wonder.  And some days I consider it to be a gift.  Even if the sky if covered in grey and the guy next door is entering week two of concrete removal from his driveway, I try to hope.  One more chance to get things right.

And then it creeps back…

The darkness that makes me think of those old cartoons where the character has a cloud dripping on their head.  Even when the umbrella is open, the water still soaks them through.  The waters on the inside?  Guess that is some reference to inner turmoil?

Hope left the building some time ago.  Parts of my life that were funny, aren’t.  The doctors have told me that with so many things that occurred in my personal life in such a short period of time, my brain just isn’t wired the same anymore.  It goes far beyond a defense mechanism, my emotions have just stopped.

Could be protecting others?  Might be protecting myself?  When you close the circle around yourself it hopefully falls into a little of both.  Mostly I think it is protecting others because I still have such emotional response to certain people.  I keep grasping for the light and only come up with

I feel like I let them down.  Even with the cancer?  But you can’t control that one!  Stop acting like an idiot!

See the battle isn’t as easy as some people think.  You can’t just will your way out of a mental state.  You can delay it.  Push it off.  But it always comes back.  This change in myself isn’t one I like.

The darkness will win someday.  The sun won’t come up and that damn jackhammer will be silent to me.  I’m only wondering if the pain goes away as well?

 

 

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Pull of the Moon on the Tides

Moon

It’s a give and take.  Or maybe someone might think that it’s more like a push and pull.  The Sun and the Moon in a constant struggle.  The Chinese got it right with the yin-yang thing, two dolphins chasing each other’s tail for eternity.  Never quite catching up to the other, but never giving up either.

Calling relationships a simple give and take really undervalues what each person brings to it.  Economists would call it Asymmetric Information, one person usually having different knowledge than the other.  Experience, maybe education in a subject, possibly they just saw a news article and felt like sharing their new bit of the world.

My brother stopped playing basketball with me years ago because having a 6 inch height advantage limited his game.  I stopped playing tennis with him because I got tired of always losing to him.  So as adults, Madden Football on the XBox!  We adapted so we could keep a relationship, even one that most days is very strained because we are very different people.

The lawyer involved with helping me execute a series of plans wants to kill me before I get the chance.  Years of knowing each other has placed him in a strange position of caring about me as more than a client.  It’s a shift from when we were in college and might have gotten into a fist fight if either of us thought there would be no consequences.

And life is about consequences!

I went to him years ago when I needed someone who would protect my ex should something happen to me.  Being the one who brought the house and other things into the relationship, I didn’t want her to struggle.  That need became intensified when the kid came into the picture.  I didn’t like him, but I knew he would be the best thing for them.

After I was left to my own devices, he became more concerned with me.  Sometimes you learn more about people by the things they don’t say than by the words they chose to speak.  His wife accidentally mentioning a book he got from the library on my cancer was a big wake-up for us both.

For two guys who were never competitive about anything that crossed over, we butted heads far too often.  Never had a class together, didn’t chase the same girl, it never made sense!  But I have needed to rely on his abilities to help guide me through some of life.

He knows the cancer is terminal.  He doesn’t care for my exit strategy.  Giving a lawyer a stack of papers and asking them to put a plan in place rarely gets an argument.  The client is sometimes right?

After all that was done, we made a few changes in our relationship.  When we talk, it’s about his son or some news thing that we both know the other doesn’t care about.  I also know it’s because putting down the phone sometimes means silently hoping that a few days later they will answer.

By looking through my daughter’s eyes I saw things I needed to improve.  At the same time when I looked through other’s eyes I wondered about everything.  Was I right?  Were they?  Confidence is one thing, but my knowledge that absolute certainty is always a failure keeps me grounded.

During the day, the sun pulls the water in one direction.  Much like me trying to do the right thing for the right reasons.  Even when they fail, just hoping it works is sometimes enough.

At night when the moon is pulling the other way I’m alone with my thoughts.  The inner turmoil that doesn’t see the light bounces in my head like watching one of those tennis matches with my brother.  The ball going back and forth, but most times passing right by me.  I always reached out but sometimes my arms just weren’t long enough, my feet not quick enough.

I have doubts about how this all ends.  Picking a day sometimes means wondering if on the next something different will happen that I will miss.  Not a cure, but maybe something?  You can’t know that your doing this for the right reasons but can only hope you are.

Carrying That Knowledge of…

Carry

 

 

In making this decision to end the slow march of cancer, I’ve had to separate so many factors that it required talking with various people.  Carrying the kind of guilt I have for so long has to be a factor removed from the discussion at all costs.  While this is going to be a selfish act, I am trying to make it a selfless act as well.

I’m not sure how to make that part work.  The lawyer has said a few things, but he has also admitted that having known each other since we were teenagers colors his opinions on this topic.  The therapist has had her chance to chime in as well.  That has been about the absolute weight of my emotions that curl my shoulders and strain my legs most days.

It’s easy to plan for what becomes of your things.  Who gets what and who gets told they get nothing.  [sorry I have an aunt who would clean my house out before the body was cold.]  But the emotions that go into that are tough.  Some items mean a great deal to me and finding them a new home with someone who might also grow to understand that can be draining.

Strangely I have a teddy bear that will go up in smoke with the rest of me because that has been the pattern for the others who have the matching 5 other bears.  Odd since they are all handmade and I still know where each of the others are.

There’s a drawer full of letters.  All sealed and signed across the back so no person opens another’s without their consent.  It has taken time to write them.  Not a single one out of spite or anger.  I’ve done my best to only talk about funny or meaningful stories.  No reason to add weight to their journey.

I have even written a draft on this blog that eventually will get posted.  I won’t be the person pushing any buttons that day, but I’m a planner and a few people here need to hear how much I have enjoyed their writing.

My nightmares come from dealing with a few of the ladies in my life.  My mother, other mother Kathy, my niece and the two she has brought into my life to help get me through the days.  I saw what happened to the first three when we had to say goodbye to my daughter.  Family grieves differently than those reading my words.  I’ve spent a lifetime protecting them and I would give everything to protect them from what comes next.

It’s not like my father or brother aren’t going to be bothered, that’s not my point.  But they handle things so quietly I couldn’t tell you what they are going to do.

Like a few posts, I’m not sure of what the point has been.  My emotions are at times very difficult to get a handle on.  I’m confused about how to handle a few people and experiences.  That female who keeps knocking on the door asking what she can do has asked to be there.  For all of it, damn the laws.  But really who goes after someone who sat in a chair while another person drank a very medicated milkshake?

Maybe tomorrow we can talk about the road trip to get ice cream?  That sounds like more fun.  Especially since we ‘re letting a 15 year old drive part of the backroads!

My Guide to Ending It…

Obsessed

If you have read my stuff over the past 20 months, you know I’m sick.  Let’s push aside the depression issue that came with a few episodes and stick with the cancer diagnosis.  It’s killing me slowly and I have a new plan.

I’m going to help it along in a more definite way.

There have been talks with doctors.  Talks with lawyers.  And recently had a more exacting series of discussions with a few people so that we understand what I need to do and what I need from them.

In Massachusetts they don’t look kindly on people ending their lives.  It’s a criminal act and in some ways a financial lose if your insurance company wants to be difficult.

I’ve made sure to map out those details so there is no issue.  And cashing in my policy was easier than I thought.  A phone call, sign a piece of paper and the money was in my account a few days later.

There’s a stack of pills that could make even the best college rave a tame event.  Whenever they shifted some medicine, I just kept the leftovers.  And for anyone who has dealt with cancer or really any long term illness, they know the piles of colorful little capsules and tablets.  [the economist in me only sees the colossal waste in all of this!]

That conversation I tried to talk a out yesterday, all about how someone basically insisted on being there to hold my hand.  The argument that went with exposing someone to the potential pain.  I was loudly reminded that whether she was in the room or not it was going to hurt.  And the less said about the other people who have offered to stand in a room the better!

In plenty of things, control is a illusion.  We try to plan but something always gets lost along the way.

Not this time.  In my mind those things don’t matter anymore.  Which is where my mistake resides, I get that.

So I picked a date.  Circled in my mind.  There are no triggers for anyone.  For a brief moment I came up with a different date, but realized I chose for the wrong reason.  Revenge.  [yeah, still have some anger issues that fortunately remain mostly under control!]

There are a few things I want to do over the time I have left.  Simple things like visit my daughter’s resting place one more time.  [at least before I take up residence?]  Go to the aquarium and watch some penguins?  And definitely go sit at that baseball field I played so many hours on and remember when the only concern was keeping my eye focused on the ball.

So I have a plan.

182 Seconds of Silence

Water

The pitcher is just far enough that I no longer want to reach for it. Someone should check the filter on something because I have asked any visitor to bring a bottle of water rather than taste what seems to be recycled sweat. Clearly it’s me and not the liquid, but some things never returned to their natural flavor after the chemo. In fact some things are better avoided because they are just reminders of items I enjoyed but know worry that cardboard will be the signal my brain receives.

I spent the past week being a captive of the medical establishment. At some point I really do need to ask if the drugs were designed to make things easier or worse? The entire task of getting up and walking a few feet didn’t work out as intended. Being dizzy just thinking wasn’t fun.

For 182 seconds I was dead. Nothing to report about that experience. I’ve needed the reports from the hospital to tell me what happened. Lots of people running around while I was laying on the floor of my den-mother’s living room. No bright lights, no angels telling me to go in either direction. Basically I was just there.

I’m glad I don’t remember or even understand all of it.

Being shocked back into some form of heart rhythm apparently doesn’t constitute a violation of a Do Not Resuscitate. Breathing being that line my body hadn’t crossed. Sure the heart was silent, but the rest of me was still trying to give it the “Old College Try”!

By the time people explained to me what had happened, my thoughts were about possibly making a few adjustments to what I thought I wanted versus what ended up occurring. The problem with that is this while depression thing that goes with basically everything surrounding my medical stuff.

I found a reason to not be so cavalier about my death. Not in such a rush to just let the cancer win out.

Every single attempt I have made to avoid letting new people in has led to finding the will of two people in particular to be stronger than my willingness to be alone. The therapist has always said I came back to Massachusetts to be around people who were going to push me to be more than I felt I was. But that is why she gets paid, to tell me things I don’t always see. Knowing that people did that same thing in order for me to tell them about economic forecasts, I get how much of a guessing game it can be at times.

The best thing I can offer is letting them have hope.  You can’t take that away from a person without it changing them in a very bad way.  They aren’t even hoping for a cure, it’s been about time and how best to spend it.  Facing simpler challenges that we might be able to conquer in an afternoon.  Something as simple as a puzzle or wanting to learn about a subject.

I know that there are times when people leave and that hug is about a full range of emotion.  Not too tight, but lingering long enough to carrying until the next time.

The funny thing I can say?  You drain too much water out of a person and they can’t concentrate on the world around them.  They slowly die.  You take away people who matter?  The same thing happens.

Punching the Ticket

Circus

All the important players were around the table.  Glasses dripping condensation on the wooden surface as one voice kept trying to be heard a little louder than the rest.  It was much warmer inside than out, even though the thermometer read 90 degrees.  Unusual for this time of year, but the kids were loving that they could pull out the shorts and tank-tops for an afternoon.

My parents had come into town to help manage a situation that was slowly getting odder and odder to trade emails or texts about.  Even the lawyer had taken a little time to speak from the beach, her voice calmly trying to answer questions while kids played in the background.  (Yes, there is a slim piece of land just north of Boston that we call a beach.  More rock than sand, there is a decent clam shack for those who are so inclined.)

If someone called me the ringmaster, they wouldn’t be too far off.  The circus of people with their differing opinions get heard, but in the end it is my decision to make.  Only I want them to understand how we got here.

Everyone gets the need for certain legal documents.  Even the ones that spell out how to handle my medical issues once I am no longer capable.  A game plan that I designed and hope others follow for the most part.  (I think one or two family members might be a little faster to pull the plug than others just to gain control over a few things.  But you can see them in the reptile house at the other side of the circus tent!)

Some plans in life shouldn’t need 15 year old girls being asked if they understand.  But the way my parents raised me means that they get a voice.  My niece deserves an opportunity to speak in a way that shows the adults she can handle what is being asked of her.  To just inform her and insist she act out of obedience isn’t fair.

My dad sits there and takes it in.  My mother is much more vocal, as is my den-mother in Boston.  I was taken back by the inclusion of a friend, but that was also something my mother requested.  It’s not a grand conspiracy, but I believe there is more communication there than I was made aware.  But she said she wants to help, be there in a way I need and sometimes forget to ask; so I don’t question any of this.

All of this was necessary because of an offer from the doctors.  They told me that by the end of the summer things are going to be bad.  Finding an exit strategy for me was something that needed to be addressed.  No one is actively asking me if I want to end my own life at some point, but they are asking if there is some mechanism in place if I chose that route.

When I was in the significant throws of depression after my daughter died and her mother left, I told the doctor that I could see multiple ways of ending my life just from objects in the office.  My list bothered the therapist because it showed I had not only thought things through, my plan had so many contingencies that nothing was going to stop me.  I obviously stopped myself in time, with lots of help.  But the specter of the cancer was always floating right above my head.

Sitting around that table we went through everything.  Discussed options and what I wanted versus what other people needed.  It wasn’t just water dropping from glasses that left the surface stain with moisture.

This is an ugly mindset to need to have.  But also one that requires a level of strength from not only me but in time all those other people.

And the biggest problem is now we wait hoping something beyond our control occurs so that we never have to have this talk again.

 

Crack of the Bat

Curve

The coach was always clear, make sure you get your feet down firmly because that was the foundation for everything that followed.  You get some strength from the kick, but put your foot down in the wrong place and your arm won’t get the ball across the plate.  You more likely were going to take off the batters head.  A foundation for everything that follows.

My belief system has always been about the ability of people to help others.  You don’t need to be an expert, only willing to stand in the box and let someone try their fastball.  You can learn to do just about anything, even when you are convinced that you have no talent.  Doesn’t mean your curve ball will get you a major league contract, but maybe you learn something about yourself that you didn’t consider.  And just because I have read a book on tumor removal and can ask questions intelligently, you don’t want to hand me a knife.

Life has thrown a few curves in my direction.  Headed straight for my helmet and forcing me to fall directly to the ground in both anger and fear.  Sometimes I got up, sometimes I’m still staring at the clouds wondering when that hand will arrive to pick me up.

The first time I ever was hit in the head I was 7 years old.  Stupid pitch that got me before I could move.  My mother screeched, my father stood up and checked me out and sent me along my way to first base.  [these days they would pull me from a game and start the concussion protocol!]  Lesson learned?  Always keep your feet planted but ready to move quickly to avoid the crush to the side of the head!

Life is full of curves.  Gentle, meandering bends in the path around a pond.  Harsh, blind round-a-bouts that block your view of what comes down the lane.  They can make you cautious and thrilled at the same time.

I’ll admit that lately the curves have been too much.  Coming too fast and my reaction time isn’t what I once had.  No longer crouched behind home plate waiting for the next pitch to hit my glove.  It’s more like the time I went to a batting cage and sat with my equipment on to learn how to handle 90 mile-an-hour pitches coming directly at my face.  [my dad was right, it helped.  But scared my 12 year old self!]

Cancer is like a pedal car going around that blind curve.  Slow progress that still doesn’t always allow for good footing.  Lately it has taken my humor and that bothers me more than anything.  Reality means dealing with life rather than joking about it.

This week scared me in a different way.  My foundation showed some cracks and the flat surface now bends.  Curves formed in the wood and now I’m wondering how many more at bats I get before the cracks splinter and pieces fly into the stands.

The screams from my mother will be different.  More people are watching as well, the crowd is still small but they cheer louder than a full stadium.  But soon they will leave the game upset the home team lost.