Frustration and Uncertainty is overwhelming

5/7

Frustration is an emotion I don't know what to do with.

Someone told me yesterday about a book they read that underlined the 3 solutions to life's problems.

1. Accept it.

2. Change it.

3. Leave it.

So, for example, if you are at a dead-end job that you cannot stand, you can accept it and make the best of it, change it by confronting that which you believe is making you upset and making it better, or leave it and find another job.

They equated it to my situation.

I can't change it. I am sick. There's nothing to Change.

I can't leave it/Ignore it, because that is just not an option.

My only option is to learn to accept it. And that's what I'm trying to do.

When faced with the variety of emotions that I am hit with on a daily basis, I do my best to accept it. See the good, see the bad and marry them, I've said this in a prior blog.

But frustration and uncertainty are 2 extremely hard emotions for me to process.

The answer is to clearly accept it. Accept that you don't have all the answers or that you're getting mixed information and that you'll get concrete information when it's available, but how do you cope with the in between time? 

This morning was a roller coaster. 

Numbers? Good.

Vitals? Great

Progress? Absolutely!

Doc 1 (6 AM): Everything looks great, your numbers, your look, everything, terrific. We just need the results of that final test to confirm your past this.

Doc 2 (9:20 AM): Same as Doc 1.

My Question: Great. and then what? are we discharging? or staying to start the transplant immediately.

Doc 2: Well, we'll likely discharge, but Doc 1 wants a procedure done on you prior to discharge and those procedures aren't done over the weekend, so you are likely here until at least Monday.

Conversations ensued. I stated my case:

If I need to be discharged, then discharge me.

If we are rolling into the transplant, then lets go.

But to keep me potentially 2 days extra in the hospital while essentially "doing nothing" more than I could be doing as outpatient, then why not let me out.

I stated with respect that of course I will do what is best FOR ME, but is this really the only option? Leaving me here all hooked up, for what?

DOC 2 who is essentially my main DOC on this case, heard me out and understood me. He said he would have a discussion with DOC 1 to see if we could make an exception and do the "we don't do these on weekends" procedures DONE on the weekend so I could go home. OR let me home without the procedure for just a day or 2 and let me come back as an outpatient (as they normally would!) for the procedure on Monday.

Further uncertainty lies with what the timeline of my transplant is. Am I setback a week? 2 weeks?

This all drives my anxiety insane. Being out of control of my own destiny is something I've never been comfortable with. I believe I addressed this too in an earlier post, hence my reasoning why I like to be the "driver" to place rather than "being driven". This way I can control when we come and go and I'm not dependent on anyone else.

I had a 45-60 minute conversation today with a friend, who handles my types of cases professionally in a different hospital. Her words were pure, and she fully understood and validated my emotional state.

But her advice was also simple. Something which I know inside, but hearing it from another person who knows me sounded much more soothing. 

"If you have to be there until Monday, because that is what it takes, then you're there until Monday. Just relax and listen to them because they really do know best"

A hospital is run on a bureaucratic time system. Whatever doesn't get done before 5 PM Friday, will wait until 9 AM Monday. And if I need a procedure done before I go home, then you trust that diagnosis and you wait, even if it is until 9 AM Monday, because you don't want to be back where you were.

And so here I am, at 4:54 PM Friday. Having being told 6.5 hours ago not to worry, the day is young, we will get back to you, without having anyone gotten back to me, at all. Do I feel neglected? No. I feel that they're just trying to figure it out and at the very least I am here until the test results are completed (which is tomorrow) and then maybe then we will know more. 

As a lifetime customer service guy though, there needs to be better communication. Once a day is simply not enough from those in charge of your case. Sometimes I think the doctors can learn a thing or two from the floor nurses whose sole purpose it is to make sure you have EVERYTHING you EVER WANTED OR FORESEE WANTING. Just amazing.

But, this is all just the beginning. Or not even the beginning. This was a TEST BEFORE the beginning of all this. A hell of a test, but a test just the same.  

The advice given to me wasn't unique advice. It was the same advice given to me by the doctors at first, then my wife, siblings and even myself at a time, but a tough advice to stomach.

I'm grateful to those who choose to take of their time and read my story as I see it. It's wordy and perhaps redundant at times, but I write in stream of consciousness, unapologetic for my own very real emotions and reactions.

The reality is my life was turned upside down just a few weeks ago, and after going through one traumatic week of figuring out what was wrong with me, I took less than a week off before going into an even more traumatic week with new teams of doctors literally needing to try and figure out how to save my life.

I'm having a tough time internalizing all of this. 

So thank you for reading.

And thank you for understanding.

And thank you to my friends for always being there, and of course my family with my wife Rachel atop that list.

Broadcasting live from 8PE at HUMC

Feeling great physically but confused emotionally.

See you next time.