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 2AM thinking about 3AM thinking about 4AM thinking about 5AM as my colleague slipping some work materials I had him working on under my 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 a lost little lamb that had slipped from my grasp before being swallowed last night....

the Ambien.


  1. Who needs up to date therapies when you have a scanner that reads your palm! Get your priorites right. ;D

  2. Omigosh... how frustrating... how fatiguing!! Hope you've gotten some sleep since you posted this...

  3. Wonderful post! Wonderful Ambien. Glad you are doing so well Nick!

  4. dooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo, you should have burst into that room and sprayed them all with your silenced uzi; errr well , uhhh, I was just gettin in to your novel like description, guess that wouldnt be politically correct and all.

  5. Such a good post, really quite funny towards the end but not I'm sure funny for you Nick. I am a none sleeper and know just how you must have been feeling counting the hours away, especially when you have a busy day ahead. I am so pleased to read how well you are doing. Keep up the great work.

  6. Great blog!

    You might want to check out my latest book HEALING WITH WORDS: A WRITER'S CANCER JOURNEY about my two cancers and battle with smoldering myeloma. you're right -- it's a bummer getting this diagnosis...but there is hope.

    The book is available on Amazon and

    Here's to health,

  7. Its amazing how physicians with all their "science" and "education" can be so ill informed and have such pedestrian influences on their opinions about things they know so little about. Shame on them.

    EPCOT! EPCOT! EPCOT! I think that's what my son's buddies were all yelling at his graduation kegger! haha

  8. Hey! you had superhuman rugrats at your hotel too?!!! Just got in from Virginia where for the
    last 2 mornings, we were woken up and kept up
    for 2 hours by a kid upstairs jumping and running CONSTANTLY without a word
    said by the parents. It sounded like a freekin'
    gymnastic meet going on. 2 hours non-stop of jumping off the beds and such. I could not believe the stamina of this kid. I came close to leaving a note on the door telling them to give their hotel neighbors a break next time and book a first floor room but figured they'd peg me for the Jerseyite and key our new truck or something.Tim did finally get up and pound on the ceiling.You're so right. Makes you so thankful for your own kid(s) but then again, our daughter would have NEVER gotten away with that.

  9. Ok, I'm reading your post with rapt interest, drinking a cup of coffee and I get to the part where you talk about mentioning TT4 to your temp doc in Orlando. Thanks to you, I executed the perfect spit-take all over my laptop and the WSJ. I have seen that look from other oncologists, but I have never as eloquently and aptly described it as you did in referencing the ill-fated Uruguayan soccer team's experience. That 'those poor MIRT sobs are one step away from eating each other' look. In fact, Nick, I think that you should put into your project planner, a reality show, starring you, that has a thin through line of you meeting with prominent oncologists around the world and telling them that you believe in TT4. The reactions would be priceless. How do you monetize it? Who knows, but boy would I love to see it. Keep me laughing, Nick, it's good for my humorcytes. Sean