Friday, July 2, 2010

Notes from Orlando and MD Anderson

I just returned from a week in Orlando for my company's annual strategic offsite with our board of directors.

A couple of things of note.

First being, Velcade waits for no man so I made arrangements with the help of PinnacleCare to be seen by a Dr. JH at MD Anderson in Orlando, who had agreed to administer my Velcade.

MDA there is quite nice, reminded me a bit of City of Hope in some ways.  After a fairly lengthy signing in process (complete with a cool scanner that reads your palmprint!) I then checked in with a nurse, who took my story.   She didn't know anything about Total Therapy and was rather amazed at the long list of medicines I checked off.  She left, and a few minutes later Dr. JH entered.

Dr. JH *did* know about Total Therapy and he looked at me as though he was seeing one of the people from that soccer team that lived in the Andes off the flesh of their fallen comrades -- like you've heard the stories but can't believe they are standing before you.  He asked me if I had ever met BB; I told him he was personally invested in my care and that I knew him quite well.  He described my current regime as "the Mother of all Maintenance Programs" which seemed to confirm the strength of this package -- I later researched a bit on JH and found out he is engaged in a not-so-interesting-trial about Revlimid and one other drug as a means of treating recurrent Myeloma.  Hello....2003 called, they want the concept back!

Anyhow, the staff was very nice, I was put in a nice semi-private infusion room that reminded me of a much nicer version of the transplant floor in Arkansas, all wood paneling, nice TV, nice chairs that were clearn with germicidal gel, etc. 

They had the freezing spray, which made insertion of the needle in the port a snap.  They drew blood, I sat back and did some work.  The only real downside was how long it took -- it took forever for their lab to process the blood, then get approval of the Velcade, then mix the Velcade, etc.  I was in the place from 7:30AM to 1:30PM.    Between that and the cab time back and forth, it was a good 7 hours.

Nonetheless, Velcade administered, and I get on with my life.  I took my dex that night and on Wednesday had one of the more productive days I've ever had -- problem solving left and right on this deal I am working through, full of energy, all the "positive" attributes of dex and I am once again indebted to the reader who suggested this be taken before bedtime rather than in the morning.

Anyhow, Wednesday evening rolls around and I take my symphony of pills before bedtime.  Among them, Ambien.  Critical to making sure I sleep well, and I had a good eight hours that I could sleep since my work was done and people were starting to head back to the west coast already at the conclusion of the meetings.

I then proceed to stare at the ceiling all night.  There's no worse feeling than knowing you have to sleep and being unable to sleep.  I had not brought my Pantoprazole (superstrength antacid, needed to combat some of Dex's less good side effects) on this trip, hoping I could just tough it out (bad idea, more to follow).  So I had terrible heartburn and hiccups, which I thought might be contributing to my lack of ability to sleep.  But I was awake...at 2AM thinking about work...at 3AM thinking about work...at 4AM thinking about work...at 5AM as my colleague slipping some work materials I had him working on under my door...at 6AM...and then I was so bloody tired at around 7:30 I thought I might be drifting off.

That's when the downside of staying "on property" (as well call it) became apparent.  The kids in the room next door started shrieking at the top of their lungs.  Note to the parents: I'm very excited that your three and four years olds want to go to Epcot center, but letting them just scream "EPCOT!  EPCOT!  EPCOT" unabated for two freakin' minutes is uncalled for.  Then the silent (momentarily) parents must have stopped one of them because that one just started screaming bloody murder while the other one kept screaming "EPCOT!".  And when I say "bloody murder" I mean it -- that kid was top-of-lungs screaming like you can't imagine.  After 20 straight seconds I thought "my God, no kid can keep that up, they're gonna tire from lack of oxygen."  No such luck.  The superhuman kid just kept bellowing away.

I sat there, marveling at how wonderful my kids are and wondering if I should pound on the wall, but lacking the strength or energy to even make up my mind, much less get out of bed and do it.

At this point, previously-silent mother screamed "I NEED SOME TIME TO MYSELF!!!!" and the door slammed.  Followed by previously-silent father saying "now look what happened" to his screaming kids.

I got up to take a shower...and then...I noticed...on the counter...like a lost little lamb that had slipped from my grasp before being swallowed last night....

the Ambien.