Saturday, July 23, 2011


Good news on the TIL clinical trial, my insurance company has come on board to pay their share of the costs.  It took a lot of phone calls and explanations about the trial but they ponied up for a sizable portion of the very sizable costs (the sponsoring drug company pays much of the rest).  If I bothered to see if Cigna or Novartis had a Facebook page I'd ask you to friend them.  So with that out of the way I anticipated a rapid entry to the study but I found out this week about a potentially devastating delay, one that quite literally would be decided by a roll of the dice.  This clinical trial has two arms, one is standard TIL and the other is standard TIL plus an experimental vaccine.  Patients are randomized into each arm equally, giving patients a 50% chance to get in one arm or the other.  This helps the researchers determine statistically if one arm has different results than the other, a standard part of any trial.  The past few patients for this trial have been randomized into the vaccine arm which carries with it a few extra weeks of delay to prepare the extra vaccine.  Given that they can process only two patients a month in the trial, the vaccine delay and the length of the TIL procedure, that means a new entrant into the vaccine arm would be lucky to start the trial in September or October.  If that happened to me then it would mean being in treatment when my medical leave of absence from work runs out.  That means the end of my job.  That means the end of my benefits.  Good feeling rapidly gone.  So today I went to MD Anderson to roll the dice.  Its actually done on a computer, but I think they should make some kind of fancy lit-up roulette wheel since they dragged me all the way to Texas to do this.  But the roll came up in my favor, the non-vaccine study.  Dr. Patel is trying to start me in the study in the first week of August.  That may be delayed slightly, but unlikely long enough to complicate my work plans.  Sometimes things just work out.
     I recently started reading Evan Handler's "It's Only Temporary", an honest and often hilarious tale of leukemia survival (yes, you read that correctly).  Evan writes about facing down 50% odds of survival and how the gravity of that impacted him and the lives of his friends and family.  It put my view of being overjoyed about the TIL study, that may give me a 50% chance of response, in contrast.  I'm ten months into the median 12 months survival for melanoma patients, facing down an 85% chance of not seeing the 2015 Tour de France (and George Hincapie's 20th participation).  Unlike Evan Handler, I don't have a statistically significant chance of dying - I have a statistically insignificant chance of living.
     I've actually been digging into all these statistics recently.  In part because of my involvement in Florida's first LiveStrong event on October first and second.  z-Motion, the riding club I belong to and strong community supporter, is a primary sponsor of the event.  It will include rides and runs and walks to raise money for the Livestrong foundation and increase awareness of cancer.  I hope to ride in the event which occurs on the date Lance Armstrong was diagnosed with cancer.  Since my doctors approved me riding a stationary bike a few weeks ago I have been training and increasing my workload every day.  Last week I rode a 100 miles, this week 66 miles so far at an average 220 watts.  I would be relatively happy with those numbers before I got sick.  Through z-Motion I'm trying to use the story of my diagnosis to help attract more attention and support for the event.  I will also be speaking at a z-Motion gathering in August if I'm out of treatment.  Outdoor athletes like z-Motion racers and riders are at higher risk of getting melanoma and also have a lower probability of early detection than the average populace.  Its counterintuitive that a healthy lifestyle can increase cancer risks, and that's my message - my hook.  When I tell people about melanoma I want to be accurate, so I researched the latest grim stats.  Incidence of melanoma is increasing at a faster rate than any of the seven most common cancers.  It is one of only three cancers with an increasing mortality rate in men.  Its the number one cancer for twenty-five to twenty-nine year olds.  Someone dies from melanoma in the US every 62 minutes.  It claims more life years than any other cancer because it the average age of its victims is fifteen to twenty years younger than all other cancers.  There is no cure.
     Sobering thoughts like these usually drive me into attack mode, make me want to kill someone or something.  Fight, fight, fight. Then fight some more.  Yes, I know that someone has to be in those small percentages, and that is where I will be.  Always have been, always will be.  But sometimes the gravity, the seriousness, of it all comes over me like a water balloon rolling on to a pebble.  We are, after all, not talking about a hand of poker or a bike race.  I caught myself staring at otherworldly clouds outside the airplane window and wondering "what if?"  I don't know what if's, but I do know that right now - 34,000 feet up in this aluminum tube - is as close to heaven as I ever want to get.  Right now I want to get my feet on the ground and my arms around my little girls.  I want to hold them really, really tight until I top up my suitcase of courage and can fight some more for them, because I know I'll fight much harder and longer for them than for myself.  Cancer does not have small beautiful children to fight for.  Cancer does not have decades of birthday parties to attend, prom photos to take, wedding aisles to walk daughters down.  I do.  In spades.  And that's why I'm going to beat the odds.  You can bet on it.


  1. william this is brilliant. i'm so impressed by your outlook and frankly your writing style. who needs international finance when you can write like this.

    i think about you and ann and the girls a ton. i am moved and inspired with every post on your blog. seriously. you will beat this. there is no question in my mind.

  2. thank you for the note last week on my bday, i very much appreciated it. i was in vegas earlier this week, and if they had a a table with your name on it, my money would have been on you. i would consider it a sure bet.

  3. We're right here cheering you on, bro! You are giving so much encouragement and inspiration to those who are witnessing this journey you're on, and especially those behind you struggling with a melanoma diagnosis. Praying continual strength for you daily!

  4. We love your odds mate - as you know with three girls, we know exactly where you are coming from - keep on fighting for your girls, for Ann, for your family and for friends and know there are people that are willing you on every step of the way.

    Jane and I love your blog, it is incredibly open, moving and inspiring (I know every time we read it, we give the girls an extra big hug). We also feel like cancer specialists now - have you thought of re-training? Keep it up mate, we continue to think and pray for you every day - keep fighting...

  5. While you are in Houston, you must visit Goode Co. BBQ on Kirby Dr. You will love it. Not far from MD Anderson. Keep on Blogging