Folsom Prison Blues- Just When I Thought I Was Out, They Pull Me Back In 😒

Once again Folsom Prison Blues is the song..

"I hear the train a comin’

It’s rolling around the bend"

Coupled with the admonishment set forth by Cinderella 

"Don't know what you got till it's gone"

I will get to those a bit more a little later on below.  But the big news is that about 6 days ago I saw people.  Up close.  For the first time since I started isolating almost two months ago.  Sure I have passed people by about 25 feet a dozen times or so on my occasional sneak-out-of-the-house-proper-social-distance runs.  And I wave at my wife from about 20 feet away as we have the occasional conversation semi face-to-face.  But this was human contact.  It was strange.

Temporary facilities courtesy of Covid

The main entrance to MSK was chained off and everything was routed around the side/back to control acres to the building.  Understandably so.  Got out of my car with my mask on.  Passed the temporary structure and screening area for probable Covid patients.  Then waved at security guard and went through the sliding doors. 

Before I was asked one thing, I started:

"I have no fever, I have no cough, I have not been near anyone who has tested positive for Covid, nor appeared to be sick from Covid.  I have been isolation for almost two months.  This is the closest I have been to any other living thing in 8 weeks." Then I chuckled and said, "Hey, I came prepared."  They laughed.  (Two nurses were probably about 8 feet away at a table.)  One came up to me and took my temperature via a temporal thermometer.  Once I was cleared, I went inside.  Almost completely empty.  I have not seen it that empty since it first opened up.  

The nurse who accessed my port was one I knew well.   She said that when she saw my name pop up on the daily list she made sure she would be the one see me.  She administered a few of my chemo sessions and has accessed my port a few other times.  She is actually a friend at this point.  We caught up.  Laughed.  Discussed everything that is going on (I was close to the last patient of the day, and things were spaced, we had a bit of time).  She listened to some music I am writing.  It was the first face-to-face conversation with someone in two months.  

Prepping for CT scan is not easy in the age of masks.

Then I had my drink for the CT.  Of course I could not resist asking the next nurse how I am supposed to do that.  As the image shows.  Eventually I figured it out ;)

Got back in the car, went home.   Took off all my clothes and shoes and left them in the garage and immediately showered.  That has been my life for two months.  Anything that comes in the mail or delivery gets put in a spot out of the way for a couple of days or so before being touched.  The only exceptions are groceries that are perishable that need to go in the fridge, so I do the best to clean them.  My wife takes precautions with any food she makes for me.  But even then I am careful where things are put down or what I touch.  This is a lot of fun.  My entire life revolves around the belief that everyone has cooties.  The knowledge I have had since I am five years old is keeping me safe.  

But back to the train.  The scan I had last week was two months after my last scan, instead of the usual three months.  The reason is because I am going back on chemo.  Tomorrow.  Monday.  May 11.  They wanted to get an up-to-date baseline before I start.  I have not seen the report or scan yet, but I was told that the lungs are looking stable, which is good because right now the lung tumors are the greatest risk to me.  But the cancer has spread elsewhere.  A new node in my clavicle is cancerous.  I thought I was feeling strange on some movements.  But as a patient with cancer, almost every ache and pain is cancer.  Regardless of whether it is cancer. 

Man those labels give me the warm fuzzies

The new drug is not fun.  I am on 5 days.  Off 2 days.  On 5 days.  Off 16 days.  The pharmacist and my doctor's offices went through the side effects with me.  A dance I have done before for the other two chemos.  

But they both seemed a bit more adamant about a couple of things - one is the low white blood cell count/susceptible to infection side effect.    

Fatigue is another big one.  After almost 40 rounds I am pretty used to being tired.  12 hours in bed is what I need to feel tired for the day.  That is a good day.  There was a day about 3 weeks ago when I was not tired.  I could not believe it.  How different I felt not being tired.  I am just used to the tired at this point.   

Anyway, in my case I knew the train was comin' for awhile.  It has done it a couple of times during the last five plus years while dealing with the cancer stuff.   And each time the train does not go past me.  Instead, after clipping me, it reverses direction and goes back to start.  The first time it faked me out, almost, and I thought I bid it adieu.  Since then I have figured out that it was just toying with me.  And Cinderella's line has been there from the start as bargaining begun.  "It is okay, I can get by missing a bit of my abdomen.  It is okay, some neuropathy from chemo is fine if the cancer is gone..." "It is okay, I do not need two complete lungs"  "It is okay, a sprint triathlon is still cool, don't need a 70.3."  "It is okay I can still FaceTime my friends."

But the reality of the situation is that the odds of me doing a triathlon of any distance again is not great.  Even if the entire world opens up tomorrow, the risk to me is just too much.  Even if the entire world opens up tomorrow, I probably cannot see my friends and family - though I am looking at maybe an outdoor picnic where I stay away and masked up. 

Without a vaccine or a guaranteed treatment, despite the fact that I have already biked 42 miles, ran 11 miles and swam 1 mile this month, I am the "at risk" that will remain hidden for a long time.  Chemo will not help.  

May 10, 2020  One last time at least

But the immediate plan is trying to convince myself tomorrow that it is a good idea to start popping pills that are covered with danger warnings, knowing that the odds of them doing anything worthwhile is limited, that I will likely have side effects which will further tire me out or push me further away from seeing people.   With all due respect to Cinderella, I know this ahead of time.

And I also know that once I step through the next unknown door of popping the pills tomorrow, I will get into whatever my new normal will be and adjust accordingly.  I will continue to swim, bike, run.  I will continue to believe at some time I will race again.  That I will see family and friends.  It is just that some days belief can get beat up a bit.  Knowing I have to start poisoning myself again within the next 12 hours makes this one of those days....