Tuesday, August 23, 2011

Cone of Uncertainty

I've finished a week of lymphodepletion here in Houston and I am scheduled to get my new t-cells tomorrow afternoon.  The hospital staff and medical team are all abuzz about my looming Day 0.  My white blood cell count was 0.8 this morning, down from over 8.0 when I checked in (normal levels are 4.0 - 11.0).  They should be 0.0 by tomorrow and I had my last chemo round this morning.  The chemo has not been that bad.  The first two days of cyclophosphamide were pretty bad in terms of the nausea and chemo brain.  But the last five doses of fludarabine have had little impact on my physical or mental faculties.  They have even cut me loose from the IV pole for dinner the past couple of nights which has been wonderful.  Besides those respites, me and that IV pole are literally inseparable.  I spend all day with it, sleep with it, take it to the bathroom with me.  It reminds me of my M16 rifle at Parris Island.  I actually caught myself arguing with it the other day when it was beeping at me saying it needed to be plugged in to recharge it's batteries.  I knew It had another hour or so in reserve.  However, Wilson - that's what he likes to be called - won the argument.  He always does, and why wouldn't he with that infuriating beeping?
     To keep from going nuts I am employing the techniques I've learned from many television seasons of "Lock Up" and "Locked Up Abroad" on TV.  I exercise every morning, schedule my in-room breakfast followed by coffee with my Dad.  I spend my afternoons in the observatory on the 24th floor playing video games or writing poetry.  I started a series I call "hospitalization haikus".  My first is an observation on Wilson:

     Hanging icicle drips
     Poison, melting, drip by drip.
     In spring hope explodes.

I have many more.  Right now I am adjusting to isolation, which started this morning.  Because they killed off all of my white blood cells I am prone to catch any little virus I come into contact with.  Everyone who comes into contact with me needs to wear masks and gloves, even my dad sitting in the room watching TV with me.  I can still leave the hospital room for one more day, as long as I wear the same garb.  So I haunt the hospital floors looking like a surgeon in pajamas.  After tomorrow I'll be in lockdown when they introduce the new t-cells and start the high dose IL2.  Then we wait at least five, or as many as fifteen, days until my white blood cell counts get back up to an acceptable level.  Of course, I'm expecting to be on the short side of that based on my previous bounce back from biochemotherapy.  Either way, I'm going to be here for a while.  I don't even dare to start thinking about going home.  But it has been especially difficult being here with hurricane Irene threatening home the past few days.  This morning they moved south Florida out of the "cone of uncertainty" for hurricane Irene.  I'm glad the wife and kids and grandma and the dogs do not need to deal with an evacuation, nor do all the other residents so familiar with hurricane's death and destruction.  It looks like my situation with the cell transfer has also finally moved out of the cone of uncertainty.  Perhaps I am in the sphere of possibility, or the cube of positivity.  Whatever we call it, a close call with potential disaster has been averted for now both here and there.  Although I am far from home I know what I've missed with the family in these weeks will be paid back a million-fold when this works.  And it's a good place to be here with Wilson and the great MD Anderson medical team, kicking cancer's ass around the clock, non-stop, 24/7.


  1. Hey William - Glad to hear you and Wilson have come to terms and congrats on 0.0! Rob bought a road bike in your honor the other day and he's really getting into street riding after years on a mountain bike. He'll fill you in on the details. We hope lockdown goes quickly for you! :) M

    PS - Kieran says "Wilson....I'm sorry!!!" (its so strange but the kid loves that movie). You'll have to yell that at Wilson when you get to cut him loose for good.

  2. I am keeping up with you and your heroic journey. I have complete faith that this new treatment will conquer the nasty beast that so many before you didn't have the chance to receive. They however did add valuable lessons to the clinical dialog and you too have made a contribution to mankind. I also watch "Locked Up Abroad". How stupid can they be !! I'm in St Augustine thankful we are not going to have another Labor Day Like Francis in 2004 !!

    "Locked Up"
    All for money and foolish risk
    Venture toward selfish end
    Lost the game

    Unexpected inner invasion
    Insight to be gained
    Rally community

    Pioneer with Wilson
    Spirit strong
    Rejoice and Conquer

    Dropping side by side
    Invaders vanish
    Success adds to glory

    Best wishes stranger cares
    Sixteen years since melanoma
    Small but never forgotten

  3. You are doing it, now done it!!!! What a legacy you are providing and we admire your strenght. Thanks to those magnificant physicians who developed the TIL.

  4. Talked to Don and he said you have been going through an especially hard time, but he is also confident that this treatment is going to work.

    We so respect you, and wait to hear some good news. You might not like "Wilson" now, but in the long run your will realize he was there when you needed him. Just like your family. They are in this with you.

    Pam & Al