Lots of fun

Since 5/17. Four years. I should be dead. But alas I was wrong. I beat the odds.

Since then I’ve had multiple chemo. I tried an experimental regime of APG 115. This drove my Blood Platlets down to 4. Yes 4. Went in for a needed transfusion- and had a reaction. Went into anaphylactic shock, and got to spend a nice three or four days in hospital. I had been advised earlier, no longer shave-so now for the first time in my life a sport a handsome albeit white beard.

Then after having problems on that, we moved to Eribulin. The last of Eribulin damn near killed me. I made two may be three doses- finished the third and started getting thrush- basically a yeast infection in the mouth. This got serious. Ended up in the hospital in June of 21. For six days. Apparently I almost died, but with the help of morphine I was unaware of that.

And now my boss is worried about my sales numbers- He is right I guess. But I’ve maintained stasis during a tough year. And secured a large sale through my company though not my explicit Acct. I do wonder when I will quit and work in a side gig?

Tried a bit of Embolization at MSK in the early fall. Docs are non committal after the first scan. We will see in December.

Due to the chemo Eribulin I now have the privilege of arthritis (manifested as gout) and neuropathy in my hands and feet. As well as destruction of my muscles. I have walked with a can since. I can’t rise from a chair with out preparation and can’t walk any uneven surface with out an aid. This ends my upland hunting career.

I’m not sure what I will do if they want to propose another chemo. I was miserable and I’m currently non recovered from the chemo effects. Surgery is apparently no longer an option. So we keep sailing. All the best my friends.

I make plans, and amuse myself. I purchase for my heirs. It’s odd. I try to live for now. And mostly my friends understand.

Recurrence

So I’ve had my cancer come back.  And spent two rounds on Chemo.  And the damn tumors keep growing- this is not good.  So we consider a third version of chemo-  

My fears- based upon a study at MSK.   Those with recurrent disease if the tumor grows more than 1cm per month- you’re fucked.   I’m fucked.  Median survival is 23 months.  No one in the study makes 48.  That will bring it right home quick.  So- I’m gonna have a blast on my way out.   Don’t hesitate to call    Could be fun!    Love y’all.   Ash

Updates and all

I am ashamed that I didn’t update this site.   My cancer came back and they called for surgery.  So I had the joy of an additional surgery in December.  

I wasn’t released to travel until December 24, but due to some sort of TARDIS deal I was able to arrive home on the previous Thursday.  

I lost a piece of liver and was able to deliver two tumors. A baseball and a softball. Haven’t seen the mass numbers as of yet. 

Surgery sucks.  And NYC is not a place to expect warm hospital care. 

Update now:

I have scans planned for the end of next week.  I expect that my disease will be back in form.  We will see.  

I have settled in my mortality.  To the point of no longer giving a fuck.  A bit liberating, and a bit disturbing. It probably doesn’t make me the best company as of late.  

Things you’re not supposed to dwell on

In anticipation of Friday I started naming Pall Bearers in my mind.  Quick to stop that train of thought.   But it is funny and disturbing how fast those kinds of thoughts will fill your mind when you’ve been diagnosed.  

I’m hoping for stabilization of my tumors.   But I can’t stop my mind from going toward the worst.  I love my very supportive wife and kids. But right now I’m legitimently concerned about the future.

All the best. 

Worries

As seen by the last post I’m worried. I’m hoping for good news but it does worry me to envision my mother crying at my funeral-  a parent shouldn’t have to see their child die.  

Yep.   Right now these images and thoughts permeate my brain.   I’m hoping for the best, but I’d be lying if I said all to be well.  Keep our heads up, and hope for the best.  And of course joke about the rest.  

I guess my jokes etc. make some nervous or uncomfortable.  Well fuck em, it’s my life and my concerns.  I can’t change the way things are- only control how I handle it.   So on a joke, a wing, a prayer, and silly hope — here I go!
All the best.  

December is coming

I return to NYC for an appointment in early December.   Scans to be preformed the previous Monday-  

Hoping that they show that Ibrance has stabilized my tumors- otw we head to plan b.   God knows what that is.  Feeling a bit off thinking about this.   The reality of where I’m heading is setting in.  I’ve successfully gained my weight back- too much really.  Im looking the picture of slightly plump health.    But we don’t know what the scans will show.     Reality can sure put a dent in your mood. 

At least I’ll be in NYC surrounded by multiple friends and loved ones.  Hopefully we can have one hell of a celebration!

Father of the Bride

This past weekend the daughter of an old friend got married. Amidst the joy of the celebration, came a time for reflection.  A boutonniere was saved to be placed upon the head stone of the bride’s father.  He passed away in 2013.

As I head into my third round of chemo – I wonder if my daughter will have to save a boutonniere for me.  These are the things that make it tough, I know that I will never get to everything before I go.  But I’d like to experience many of them.

I’d like to see my kids graduate and start a career, I’d like to hold a grandchild, I’d like to see a clean garage!  I guess that I can control at least one of these desires, the other ones are too far away and out of my hands. Upon reflection I guess it all is really out of my hands.  That doesn’t mean I have to like it!

 

Storage and clothes

As my weight fluxuates I’ve come to the conclusion that I need to set up skinny, normal, and fat bins for  my clothes.   Doctor still want me to eat- what do they know that I don’t?   Or are they ignorant of my eating ability?

I can accomplish feats of gluttony most folks would never consider.  Because they are not bat shit crazy.  I’m talking delicious uncouis (so) foods.  Fat?   Not a problem.   The chicken livers were so good we ordered two more rounds.   

Yep.  I can do food.   All the best y’all. 

Round 2

Started my second round of Ibrance today.

Started my second round of Ibrance today.   Not really sure if it’s the med or the emotions that have made me nauseous and too warm.

I guess I will see how this progresses, last month the symptoms were well tolerated, right no I just want to lay back down.

Names are important!

Names Are Important!!!

I have been spending a lot of time in various doctors offices as of late. Seems they all want to get their hands on me, especially since I’ve hit my yearly insurance max.   While I appreciate all the attention and hope that we will find a cure – they keep addressing me by my first name.

I’ve never used my first name- it was my father’s and as he used it till eight years ago, I’ve always gone by my middle name.   What is it about forms, computers, etc. that defies my attempts at being addressed by my name.

I asked at my first Oncology appointment to be addressed by my name- “no problem.”    Eight appointments in, and reminders about it, I’m still called by my first name.

I have tried this at several doctors offices to no avail.   Was even given a place on a form to list my preferred name at a major research hospital.  Again called by my first name.  I get HPPA, even being asked to state my full name. But to be so damn insensitive as to ask for a piece of personally crucial information and then not act on it?   I’m bewildered.