Not Dead Yet

OK, it’s been a very long time since my last post so let's get caught up.  I started back at work and started a new treatment protocol – both have admittedly taken a bit of focus off of my cancer fight the past couple months.  Going back to work has been great.  As I’ve mentioned before I really love what I do.  It also gave me back a sense of normalcy, which honestly I do not feel is deserved but I’ll enjoy it nonetheless.  Cancer is not curable; having it is a new normal – at least internally.  From outward appearances, my life has become surprisingly normal even though the fight continues in a less obvious way.  The new protocol is a daily pill, like taking a very expensive vitamin, and even that does not seem cancer like.  Sometimes I wish I was in a hospital bed fighting it out to the end with cancer, but I’ve learned to appreciate low intensity warfare just as well.

 I'm now on daily low-dose chemotherapy drug on a 21 day cycle with 7 days off.  The idea for the protocol comes from a paper published the end of last year from a medical team that tried prescribing Temozolomide to cancer patients who had not responded to high dose IL2 treatments.  Usually such a drug is given to patients who have had a favorable response to IL2, to help continue the response.  Their theory is that the IL2 has amped up the immune system – even if there are no measurable responses – and that the chemotherapy drug attacks the tumors as well as attacking more Treg cells (immune system brakes) than regular T cells (immune system accelerators).  They had response in 6 of 9 patients, and my lead oncologist thinks that the TIL treatment and follow-up IL2 put me in an ideal position to benefit from such a chemotherapy.  I think this is called “novel therapy” because it is not a standard protocol or even a clinical trial (nothing like taking a complete flyer on your treatment).  I just completed two cycles and test results at MD Anderson recently show there have been no new tumors and a slight decrease in the ones I have.  Given that the side effects – general nausea, especially in the morning - and low white and red blood counts, are relatively mild, we are going to continue with the treatment for two more cycles and see if the progress continues.

            If I choose to seek other options, there are many exciting new developments.  Earlier this year the FDA approved two new melanoma drugs (Yervoy and Zelboraf) and there is a new treatment that is getting the community excited called anti PD1.  It works very similar to Yervoy which releases the brakes on the immune system.  CTLA4 is one of those brakes and Yervoy blocks it, PD1 is another brake and blocking that is supposed to have similar effects to Yervoy - but better.  PD1 stands for “program death 1” – not sure how that name came about but I like the sound of it and I can easily picture it chalked on the side of a large air to ground smart bomb.  There are a number of clinical trials under way using a number of drug company’s versions of PD1.  The smart money is usually with the big pharma companies and five of them are racing to put a PD1 therapy in trial (see “Bristol-Myers Squibb Zeroes In On A Blockbuster Cancer Drug”).  There is even a trial combining both Yervoy and PD1, a potentially very potent combination.  Most of the trials are all still phase 1 so they are not something I am willing to ditch my current protocol for, but I’m keeping an eye on the research and planning my next couple moves.

            The past couple months have also been a time for reflection.  After not responding to two different protocols that each were the best shot I had available to me, it’s been very tempting to feel defeated.  While recognizing that statistics are not friendly to me at this juncture (not accepting, but recognizing) the question becomes what to do about it.  Or more pointedly, what to do differently about it?  Take any person off the street and put some parameters around their expectations of longevity and immediately you get a knee-jerk reaction about them suddenly pursuing a bucket list and making major life alterations.  In the business of fighting cancer over the summer I never considered such actions, but in the relative calm of my current protocol it does sometimes float to the surface for consideration.  I do not have a bucket list but maybe I, given the circumstances, should pick up my family and move us all to a beach in Hawaii to enjoy the time I have left?  It is a serious consideration, but in reality no different than before I was diagnosed with cancer or for any of us regardless of health.  And, after a lot of thought, I’ve realized that those flights of fancy would not stand the test of time and that what I truly value in my life is already a reality.  It’s waking up next to my wife and/or dog every morning, it’s watching the girls go to school, it’s enjoying a sunny day on my patio and doing work I enjoy and hanging out with friends.  I don’t want to change any of that, I want it to continue.  This reminds me of what a friend once told me was the definition of wealth.  He said that if, upon coming into a significant sum of money, you would not materially change your life then you are already wealthy.  If someone dropped a huge sum of money in my lap today I would not change the car I drive, nor the house I live in nor my job.  I’d be hard pressed to change a thing.  There’s a lesson in this - for me and, I think, for everyone.

            So I'm in a bit of a weird place, one I did not anticipate in my many projected scenarios of how this cancer battle would play out.  I honestly thought at the end of 2011 that I would be either NED or dead, a middle option never really came up.  And while I cannot ever come to you to report that I am cancer free, nor can I report now that I am NED, I do think I have beaten cancer into submission for now and it feels pretty good.  People can live with cancer indefinately if it is kept from growing so I'm much closer to NED than dead, and its not just that I'm a glass half-full kind of person.  I admit to sometimes having doubts, sometimes being a glass half-empty type, when the labs come back poor or the aches and pains won't go away.  But I learned one very important lesson from that - dying is not any way to live.  We each have in ourselves the power to describe ourselves as living or dying, regardless of our circumstances.  And I'm very much alive, thank you.  I've started reading Not Dead Yet by Phil Southerland who overcame diabetes to accomplish many amazing things in cycling and the fight against the disease.  Inspired, I've signed up for the Tour de Broward and Tour de Cure in March and the MS150 event in April.  Each is a major cycling event that challenged me in previous years when I was in top form.  I have about 16 weeks to get back into shape and overcome the side effects of the chemotherapy if I'm going to complete these events.  I've started riding regularly and systematically, turning my pedals "in anger" as Phil Ligget often says of pro bike racers, but my anger is directed at this horrible disease.  On my bike I feel back in the fight, mano-a-mano with cancer.  Each pedal stroke is a kick to cancer's face, each mile a terrific body blow and each ride another victory round in the squared circle.  Nope, not dead yet.

Not Dead Yet - posted above with correct date

Just Remember I Love You

Over the weekend I completed the LiveStrong ride and event here in South Florida.   Although having a few bumps being the inaugural event, it came off splendidly. I ended up riding the short course with my wife and her good friend.  I was originally afraid to ride because these things are usually crash fests, but with most riders doing the 100k or 30 mile ride there was only a small group to do the symbolic 10.2 mile ride.  It actually made a funny picture with half a dozen police cruisers surrounding just the three of a us, blocking traffic on A1A in north Miami beach, after the group spread out and everyone else but us left the police escort behind.  I've never felt more safe on two wheels.  I can't imagine what $215,000 will buy for LiveStrong.  How many guidebooks or staff hours spent directing those diagnosed with cancer into clinical trials or helping navigate insurance options.  It's an amazing thing.

Some good news, the medical team has OK'd me to return to work on Monday.  I had my six weeks scans in Houston yesterday, and the results were neither here nor there - as expected at this juncture.  They could have been worse, they certainly could have been better.  In fact, they were good enough to keep me in the TIL clinical trial but also bad enough to consider leaving the trial and starting option B (or D, or E - I've lost track). Ah, the ambiguity of cancer treatment. I have further scans in another six weeks that will be important in determining whether the TIL treatment was successful or not, should I decide to wait.  In the meantime life seems to slowly be returning to some level of normalcy, although I'm not sure what I expect normal to be these days. I think about this a lot. I am not equal, physically, to what I was before the fight began.  There are aches and pains, some body parts don't function as well as they did and stamina is fleeting.  But does this mean I am worse off than when I began? Or is it something to be treated or accepted in kind?  Should I complain or rejoice?  I have resorted to asking myself "what would John Wayne do?"  I use this as a litmus test as to the degree of 'nutting up' that is required for any given situation.  Would John Wayne complain about aches and pains?  I think not.  Perhaps this is the new normal, or perhaps it will get better. Either way, it is what it is.

I have to admit that I am a little afraid to return to something like a normal life.  Any survivor - and anyone living with cancer is a survivor - has to question why it is that they survived. What did they survive for? I am sure that there'll come a point, perhaps at a dismal business meeting in some god forsaken town, where I will ask myself "I survived for this?"  I have given a lot of thought to this and I believe the answer will definitely be 'yes'.  We survive for everything that is life, the small things, the big things, the good and the bad.  Because the dead only know one thing, that it is better to be alive.  It is better to know anything then it is know nothing.  And to be honest, I quite fancied my life before my battle with cancer began - the good, bad, big and small.  I will gladly take the little things, the bad things, again if I could only just maintain my role as my children's father.  That alone is worth everything, and my family is the reason I fought so hard this summer.  Fittingly, our family anthem is the 70s song "Just Remember I Love You".  For some reason, my kids absolutely love that song and the lyrics have been keenly appropriate this year.  There is nothing sweeter in the world than my six-year-old singing to me "just remember I love you, and it'll be all right".  I remember, believe me I remembered during the endless hours in the hospital bed staring at the picture of her precious face knowing that I had to pull through for her.

So - since I do not have much going on for at least the next month on the cancer front - this will be my last post for a while, perhaps longer.  I'm getting back to a normal life and hopefully for good. If you haven't already, sign up for e-mail notification of any future blog updates.  I cannot even begin to thank all my readers for your support. Many I know, most I do not. However, each and every one has meant very much to me and all have had a hand in this great fight.  Unfortunately, the fight continues.  Not just for me but also for the 28 million other people affected by cancer in the world today.  October is breast cancer awareness month and, sadly, my mother was diagnosed with breast cancer just a short time ago. She begins chemotherapy treatment next week in her hometown.  As if I do not have enough reasons to hate cancer - now one half of my birth family is going through cancer treatment.  Her prognosis is good though, and she is a tough old bird - but it still pisses me off. There are way to many affected by cancer in the world today, it's just unacceptable.

Let's agree that in the meantime you will continue to do your part, fighting for yourself or a loved one or just out of kindness for others.  I'll continue my fight, kicking cancer's ass in my own backyard.  Until next time.

"When it all goes crazy and the thrill is gone,
The days get rainy and the nights get long,
And you get that feeling you were born to lose
Staring at your ceiling thinking of your blues.
When there's so much trouble that you want to cry
The world has crumbled and you don't know why
When your hopes are fading and they can't be found
Dreams have left you waiting, friends have let you down.
Just remember I love you, and it will be all right.
Just remember I love you more than I can say.
Maybe then your blues will fade away."
"When the blues come calling at the break of dawn
The rain keeps falling but the rainbow's gone
When you feel like crying but the tears won't come
When your dreams are dying, when you're on the run.
Just remember I love you and it will be all right."

I do, and it certainly is.