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.