Talk to Me

 

I cannot put pegs into these slots 

If any of you have stuck with me on these random posts I share every so often, over the past ten years or so, you’ll know that I’ve shared a lot of tales regarding my medical history.  I’m sure it’s not very entertaining, but it’s been my way of dealing with it.  Writing about my medical experiences helps me deal with them emotionally.  None of it is intended to create a pity party for me.  It is to get it off my chest, and by chance, by sharing my experiences, I might reach someone that may be helped!  I would be astounded.  I also like the idea that it might create connection.  It rarely has, but perhaps one day. 

Currently, I am in a strange place.  I was on a new medication that has been pretty successful at shrinking tumors caused by the genetic syndrome I have (VHL).  I began taking it in March of this year.  It did cause minor tumor shrinkage by May, but for me, the side effects were tough to handle.  I began to regularly struggle to breathe, and started to have occasional chest pains.  The doctor lowered my dose.  My next MRI, showed no tumor change by August, which seemed promising, yet the side effects made life unlivable, so my oncologist lowered my dose again.  This seemed okay, until September when the side effects kicked in again!  So bad, the chest pains were worse than ever.  I started having days where I could not do anything at all, because of the pain and lack of oxygen in my blood stream.  Turns out I had developed atrial fibrillation.  My heart was beating irregularly and way too fast.  One day in October, I actually ended up going to the ER, which seems to be called the ED now.  Now, I’m no longer taking the medication and my most recent MRI, early this month, shows new tumor growth. 

At this point, I honestly don’t know what to do.  I’ve been told that another brain surgery will be too dangerous, I already know that uncontained tumor growth will lead to paralysis, incredible pain, and eventually an agonizing death.  So, what should I do?  The medication is too harsh to take.  It’s intolerable.  I’ve been in mourning, while I try to accept the idea that I’ll have a rough road ahead.  I’m not done fighting, but I need to prepare for an unpleasant and possibly deadly near future.

Again, none of this is intended to elicit sympathy, it is simply my reality.  Besides possible connection with people, I am looking for understanding and support.  I am honestly, exhausted about unsolicited advice from people who clearly do not understand or try to understand my situation.  I do not believe that my problems are any worse than anyone else’s.  In fact, I am working hard to acknowledge my great fortune in life.  Everything could be so much worse. 

All of us have problems, it’s a part of living.  I get incredibly frustrated when people try to compete over who has things worse!  Is that what you really want?  Do you want to win at misery?  I certainly don’t, nor do I think I would.  There is a narcissism there that I cannot relate to and that I find incredibly frustrating.  Because of my experiences, I am actually very empathetic.  I take people’s troubles very seriously.  No matter what the troubles may consist of.  Being a patient in the hospital for long periods of time can be frustrating and difficult, but mostly humbling.  Your privacy and personal space are constantly invaded.  It’s like a chance to live like a helpless infant, but this time you will likely remember it – vividly!  As a side effect, at least for me, it takes away a lot of bullshit fronts that we all build up over time. 

 

Therapy is always all smiles

I have lost friendships as my health has declined in recent years, and more so, find that I don’t hear, nearly as often from my friends.  I don’t blame them, because I cannot do a lot of the things I used to be able to.  I wish it weren’t so, but it is reality, and another thing for me to mourn, along with mourning of the loss of that old functionality.  I get tired and very frustrated by fumbling around and struggling in an effort to do simple tasks.  And you know what?  It’s not pretty.  I try to be patient and positive, but endless hours of Physical and Occupational therapy exercise over several years have made very little impact.  I get incredibly angry and my neighbors are likely exhausted from hearing me shout exclamations through the shared walls of our apartments.  Everyone chooses their own path, and if I’m too much of a bummer, or no longer am that go to guy for a companion at a live show, or out on the golf course, or whatever, I respect the choice to take me off the list.  However, and most important, I want to thank everyone who has stuck by me over the years, I cannot thank you all enough!  Your generosity has kept me afloat, and that is incredibly humbling as well. 

I’m not sure what else I really want to say, other than a little understanding would be nice and incredibly comforting to me.  I am upset and angry enough.  Like I mentioned before, it helps me get my anxiety under some control, if I write about these things.  I have a lot of fight left in me!  I’m simply uncertain right now, and frankly, scared.

Ocean Breathes Salty

He sat down on the bench beneath the coat rack. Various odors drifted around his senses from the jackets lined up above his head. Each jacket’s stench told a different story about its owner. He leaned his elbows onto his knees and dropped his face into his palms. He didn’t want to delve into those stories. Pain felt like it was going to rupture out from the middle of his back, or at least seep out through the hole in his left side. The pain was from pressure. The pressure was from old blood swirling around his insides from a long stretch of internal bleeding while on blood thinners during a disastrous hospital stay. He was dizzy from the pills he had taken. He began to shiver, as he attempted to regain his feet and return to work. He closed his eyes and concentrated on his hands as they struggled to retie the white apron around his waist. He heard a voice from behind him ask if he was okay.

“Well that is that

And this is this

You tell me what you want

I’ll tell you what you get

You get away from me”

Red and green cloud the pool’s alternating surface direction inside the bright white porcelain bowl. He managed a grunt of laughter as he thought to himself about how the colors were so festive. He tried to ignore the burn from the infection. He was unable to button his jeans, because his hands were shaking too much. The bandage wrapped around his abdomen had begun to unstick, so he tried to hold it in place with his elbow. The tiny rubber ball underneath the burgundy stained gauze that was connected to a tube that thrust deep inside of him looked like it was filled with Kool-Aid, but it made him think of knife wounds.

“The ocean breathes salty

Won’t you carry him in

In your head

In your mouth

In your soul

And maybe we’ll get lucky

And we’ll both grow old

Well I don’t know

I don’t know

I hope so”

Wrapping his arms tightly around each other, he allowed his head to fall against the stair behind it. His momentum shifted his weight across the steps into the wall. He couldn’t make the ataxia of his torso stop no matter how hard he tried to squeeze himself still. His teeth rattled despite his efforts to clamp down his jaw and arrest control of his muscles from the disease that had already eaten away his soul. He could’ve called out for help, but all he could think about was his impending death. It was past 3 am anyway. He didn’t want to wake anyone. He pondered the notion of his death and what it meant to him. Nothing came to mind, other than a sense of relief and the emptiness that he had always envisioned. He had learned less than two months prior that bleeding to death internally would be a good way to go. It was so relaxing to be slowly drained of life; to delve peacefully into a deep sleep and then never wake up. He did wake up though, and instead found himself sweating, shivering, nauseous and forced into a fallen position on a staircase due to crippling pain.

“Well that is that

And this is this

You told me what you saw

And I’ll tell you what you missed

When the ocean met the sky

You missed when time in life

Shook hands and said goodbye

When the Earth folded in on itself

And said ‘Good luck

I hope heaven and hell

Are really there

I wouldn’t hold my breath’

You wasted life

Why wouldn’t you waste death?”

He stared out toward the horizon. The low autumn afternoon sun still burned bright, if not hot. He considered how the tiny bumps for hills covered with tall trees to the west are blocking his view of the ocean from this vantage point. He had actually never seen the beach along this stretch. He had been to this little town hundreds of times, but never ventured anywhere beyond its two very modest golf courses, which lie just inland. He held his shirt up, as his friend worked diligently to reapply his stained bandage to his side and back. A layer of sweat from the activity and humid heavy coastal air made the bandage a liability. The third member of their group, who joined a few holes prior, asked if he could play through. They nodded and laughed at the circumstance. His pain and mourning have been tempered with determination and a realization at how much he wanted to keep fighting.

“The ocean breathes salty

Won’t you carry him in

In your head

In your mouth

In your soul

And the more we move ahead

The more we’re stuck in rewind

Well I don’t mind

I don’t mind

How could I mind?”

lyrics & title taken from Isaac Brock./Modest Mouse