Count Down to T-Day

We have a schedule for the TIL treatment, and I go to Texas on August 15th for two weeks.  I’m not sure if “excited” is the word but I am psyched about the promising results and the cutting edge science.  The week of waiting for the date was nerve racking because my whole plan on getting this trial done before my medical leave of absence expires depends on timely scheduling.  When the doctors don’t call you back you inevitably start coming up with reasons why.  So I had one wonderful day of knowing the date was set in stone.  Then I got a call from the TIL team asking to get a rush job brain MRI before they thaw out my t-cells on August 8th.  They are concerned about cancer activity in my brain because of the other metastasis within my skull.  I have a cranium lesion, orbital metastasis and – as of June 30th - an intercranial metastasis, but still no brain tumor.  A brain tumor would exclude me from the TIL study, at least until it was treated.  Not quite an “oh, shit!” moment, but definitely a rapid dissipation of a too-short lived relatively good feeling.  I’m fond of saying (at least from now on) that the deal is not done until the needle is in your arm, and maybe not even then.
     The interesting thing about that call, and I’ve noticed this more and more lately, is the sharp contrast between the routine manner of communicating such news and the life changing affect it can potentially have on the receiver.  As occasionally in life when something drastic happens to us and we have to deal with someone to whom the event is routine.  Like getting in a car accident or getting mugged.  Your life seems turned upside down, the impact seems severe with possible long-term effects but the police officer taking the report sees it everyday.  You can feel the same vibe from the oncologists and nurses, they know the stats and what seems to you as devastating is to them routine.  I guess after a while one’s definition of routine can change, but I now understand why cancer patients and their caregivers can suffer from Post Traumatic Stress Disorder.  It can seem, at times, overwhelming.

But, of course, we will not let this hold us back.  It has been said that worry does not empty tomorrow of its sorrow, it empties today of its strength.  I’ll assume everything is on track for my immune system upgrade to 2.0, special melanoma fighting edition.  I’ve been on the stationary bike and hitting the weights.  I’ve been vegan for over a week, boosting my immune system.  My caregivers are lined up and the flights have been booked.  I’m going in strong, chin down and elbows in – swinging.  Watch out cancer, it’s almost time to meet my version of the Green Berets.

Update - sort of

With the end of the Tour de France and my ongoing wait for a spot in the clinical trial, I thought I would take time to catch you up with a random collection of facts and observations I have not been able to tie into any narrative thread, but feel important to share.

•  I've recently adopted a very short haircut, in part to externalize my fighting spirit and partly to cover up the result of radiation therapy.  Thankfully, my hair did not fall out from the chemotherapy.  However, it did disappear along the side of my head where the radiation beam went through my eye socket and continued on to China.  So I wear my hair short these days waiting for the hair to return (fingers crossed).  If I let it grow, I look exactly like this guy from the toilet paper commercial.
•  My only other obvious sign of therapy has been my right eye.  The tumor there has ceased to cause blind spots but still limits my near vision significantly.  My left eye can read fine.  As the degree of this is still fluctuating I am hesitant to order another pair of soon-to-be useless glasses and have opted for store-bought reading glasses.  My recent solution is to buy a strong prescription strength pair and pop out the left lens.  It gives me an intellectual homeless look and helps keep the seat next to me empty on airplanes.
•  I have been shuttling between Ft. Lauderdale and Houston on Southwest Airlines, which has a couple direct flights a day and no change fees (important when you have those open-ended doctor appointments).  Last week I was elevated to their “A-list” category because of my frequent flying.  I now have the highest status on the cheapest, no-frills airline in the country.  Yeah!  Not exactly like George Clooney’s character in “Up in the Air”, but two bags of peanuts are always better than one.
•  Food tastes have largely bounced back from chemotherapy.  Before treatment I classified food into three categories – unacceptable, acceptable and enjoyable.  The split was roughly 15/60/25% and after treatment it was 15%/84%/1%.  My love of everything coffee related took a real hit, as I could not stomach it in any version.  This was especially painful after my significant purchase earlier this year of a gleaming chrome and black Swiss designed, Italian espresso machine.   I can now drink coffees and lungos and lattes, but the love has yet to return.  However, not having to wake up for anything seems to counterbalance this somewhat.  Ann and I have recently started eating raw vegan from previously eating a vegetarian diet.  This makes the food split about 98%/1%/1%.
•  Appetite is one of the common casualties of chemotherapy, which leads to inevitable weight loss.  This is so cruel as it is one point in your life that you want and need to gain weight but when you have lost any taste for food.  Note that cancer research has shown that the chemical marinol is one of the most effective anti-nausea appetite-building drugs available.  It occurs naturally in cannabis sativa (marijuana).  Just saying.
•  Those of you who know me know that only alcohol can beat out coffee in terms of most likely to be in my hand at any given time.  This went out the window during the first treatment, partially from recommendations of the medical team but mostly from taste.  Now I can stomach a hoppy wheat beer with a meal but no wine or other alcohol.  Besides the obvious physiological improvements that resulted I estimate this has saved me between $50 and $350 a week.  Who said cancer treatment does not have a positive side?
•  Other positives include the skin rejuvenation I received on my last round of chemotherapy.  My face peeled non-stop for almost three weeks.  As a result, I still have people telling me how much younger I look.   Laser skin resurfacing costs an average of $2,100 according to Dr. Oz.  In addition to significant costs savings from dry cleaning, hair products, commuting costs of gas and tolls, I think I may be in for a financial windfall.

•  Among the things I’ve been spending my new found wealth on are my own version of the LiveStrong yellow wristbands.  Yes, I sport the LiveStrong band and will get a LiveStrong tattoo once I kick this thing.  It is one of the most effective organizations to support patients and raise cancer awareness.  While I do not want to try to improve on perfection, the LiveStrong band is just a little polite for my own version of a campaign against the disease.  I wanted something that captures the magnitude of struggle and deep emotional connection that I feel to it.  So I have created my own wristband that me and my friends are sporting that is a little more on point.  Let me know if you want one.  Get one for grandma, too, but please note that they do not come in kid sizes.
• My wife has used some of the money to pamper me in my time of need.  She does, however, get the least usable present award for buying me a gift certificate for a scalp massage after receiving a particularly fabulous one at a local spa.  A few days later we found out I had a skull lesion, basically a hole in my head that is probably best not massaged.  Awkward.  But this did not stop her from the requisite “hole in the head” comments.
• Ann, of course, has been my champion through all of this.  We laugh, we cry – but mostly we laugh.  That’s why I love her and why I married her.  We know that many cancer books recommend latching onto a poem or a song that can help pull you through the tough times.  We could not get past a rewording of John Denver’s “Sunshine” where “sunshine on my shoulders makes me happy” becomes “sunshine on my shoulders gives me cancer”  (my first and second incidents of melanoma were on my left shoulder).  OK, you probably had to be there for that.
• Another inside joke between us stemmed from the award winning biggest understatement of a nurse who, upon checking off my list of symptoms, stated that I was in “perfect health – well, except for the cancer.”  Now Ann I use this as our standard line when we so often have to go through these checklists.  We tell them “no nausea, no pain, no falling or injuries, etc., etc., – I’m in perfect health”, then - in unison - “except for the cancer!” [buh-bump].  Cracks me up everytime, but many nurses seem have no sense of humor.  I don’t think cancer has a sense of humor either.

Odds

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.