The Median, the Mean, and the Mode



The median the mean and the mode

My last two oncology appointments had my mind going back to my statistics classes.  Any of you remember statistics?  The median is the dead center of the bell curve, the mean is the average of the entire distribution, and the mode is the number that comes up the most frequently.  (See this is both entertaining and educational).  If you recall the news I received last week, the new drug therapy info sheet shared that the medication had a median survival rate of 23.7 months.  What I learned in my visit to MD Anderson this week is that it is from the date of diagnosis.  So I’ve used 11 of those months.  However that is merely the median.  That means on the bell distribution, exactly half of the patients live longer and half don’t. 

So we’re going to try the drug FolFox.  This is graded as a very effective drug for my cancer and we should see some results.  The downside are the side effects.  It is very toxic.  In addition to the cornucopia of body function changes I’ve been getting, neuropathy will almost inevitably come into play.  The reason I chose to do FulFiri first is because I still wanted to coach baseball for the kids last spring.  FolFox can cause severe numbness in the hands and feet.  So severe that I may not be able to walk unassisted in four or five months…or drive (because my feet won’t have the tactile sensation to know how hard I’m pressing the gas or brake – this is the extreme).  In three months they’ll know if it is working or if the effects are wreaking too much havoc on my limbs.  Then we’ll decide the next steps.  Obviously I’m hoping we’ll pull back (modify the dosage) before it comes to not walking.  Additionally, there is a risk of permanent damage. Statistically 25% of FolFox users never regain full sensation in their hands and feet.

The next drug in line is Stivarga.  It is a pill chemotherapy that my Austin oncologist isn’t very fond of (not very effective and very expensive), but the MDA oncologist thinks it might provide some temporary stability.  The next step is clinical trials.  Here is the good news and the bad news.  The good news is there is one GI trial (Gastro Intestinal) going on at MDA but it is for folks who have a genetic disposition to colon cancer or screen MSI – high.  I am not eligible.  That means that my cancer is not genetic which is good.  Taking it a step farther, it means that my sweet Connor and Josephine are not ticking time bombs.  That makes me happy, more than you can ever know.  The bad news is there are no trials for which I am eligible at this time. 

There may be a phase 1 trial coming up in 3 months which targets colon cancer with a K-RAS mutation (which is what I have).  The upside is I am young, strong willed, and have not succumbed to the normal wear and tear of a year’s worth of chemo.  I still have an appetite (for the most part), have not lost weight, and am still strong.  That makes me a pretty good candidate (that I have proven I can take a beating).  The downside is that phase 1 testing is usually for people with nothing to lose.  The dosages are still being worked out.  There can be a high mortality rate as they try various doses to dial in the right formula.  It is designed to potentially extend the life of a few folks with a very short runway, and then once they figure out all the bugs, move on to phase 2 and 3 trials which offers more certainty of how things will work.  When I go for testing in 3 months to see how the FolFox is working, they are going to make an appointment with the phase 1 team for me. I may be running out of options.

When you ask Connor to put his underwear on after a shower

When I was a kid I read the book Flowers for Algernon (also made into a movie called Charley with Cliff Robertson).  Briefly, it’s a story about a retarded guy named Charley who worked in a science lab.  They were using experimental drugs on a mouse named Algernon.  The drugs made the mouse super smart.  So Charley wanted to take the drug.  They let him and he became brilliant.  Then about a year later the mouse died.  Charley knew that the drug that made him famous and smart would now also kill him.  But he was able to live a life he’d never dreamed existed.  Anywhoo, it just popped in my head as I was driving home from Houston thinking about the logistics of a phase 1 trial in which I may have lost sensation in my fingers and feet by the time I’m eligible.  Good times. But I too had a brilliant year, and I’m glad I did.

The night after my scan, I was at Nita’s uncle’s restaurant, Patrenellas.  I sat at the bar, ate the best pasta ever, and talked with Uncle Sammy and his son Sammy Jr.   We talked about a lot of things and Sammy Jr. told me about a friend of his who had a heart attack.  He too had cancer, but was so consumed with worry it led to his hypertension and eventual heart attack.  He actually worried himself to death.  I know how easily one can get spun up thinking about the mortality, finances, family, etc.  But you really do have to step back and calm yourself and accept your situation or it can literally kill you…sooner.  So I wonder if my attitude has taken me this far?  Have I willed myself to stay somewhat healthy?  Have all the prayers from my friends, family and support group gotten me this far?  I think yes.

I had a dream Wednesday night in which a white light came and spoke to me.  It said that I was going to be cured.  I asked the light if it was God.  The response was, “You will be cured.”  Now there is no cure for what I have.  I have been told many many times by several medical experts.  So a cure?  I’m not sure what to expect but what a miracle that would be, wouldn’t it?  And why not?

Nita was on the phone listening as my MDA oncologist and I went through the options and scores.  My CEA was up to 28 by the way.  Nita asked about overseas treatments, any and every homeopathic effort and we were given the scientific answer. We even asked about this proton therapy type of radiation a friend told me about.  They said they could possibly do it on my liver, but not my lungs which means I’d be denied.  (Why waste the therapy if you can only save half of the dying patient).  The response: twenty-three point seven months is the median.  Some have lived as long as 10 years.  Most have not.  What I can say, is I believe I have lived more in the last year than many do in 10. This past year I have sincerely paid more attention to my children, their thoughts, loves, wants, and play than maybe in the previous six…and I considered myself a pretty good dad. 

My focus on my family is a treasure that calms me when things get choppy.  I can clearly see their faces and smiles in my mind when I am alone, in bed, or in a car.  I only kind of wish the kids had enough maturity to fully understand how much I love them.  But that maturity comes with a price, as Nita can tell you.  That price is understanding the gravity of my situation.  Someday the kids will too.  But today I’m glad they are still chasing bugs, wrestling with me, and doing sneak attack tickle fights.  Let them keep and enjoy their youth.

That reminds me, I was doing a little research on cancer memoir books and I found a title that absolutely cracked me up.  I didn’t read any of the inside, so I’m not sure if it was sarcasm or not but here was the title, “Cancer is not a gift and it did not make me a better person.”  That guy is either hilarious and has a wicked sense of humor or he is the last person you want to be stuck with in an elevator.  But we are coming up on a year and I’ll probably start compiling the book before too long. 

Thursday night was the first meeting of my golf committee.  We are going to have a golf tournament benefiting the Martinez family foundation on December 4^th and 5^th.  So save the date and get ready.  There will be celebrities, a dinner, maybe a comedian, maybe a band, an auction with some amazing items, and some pretty spectacular prizes and hole in one awards. So if you can make it, mark this down on your calendar.  There will be more details in a few weeks.  But the auction and dinner will be family friendly with Santa activities galore.

I have found the key to strength and mental toughness is to always have something to fight for.  So for me, it’ll always be my family.  But for bonus points it is a golf tournament in December that I intend to both attend and participate in some capacity.  I will be there; I will be strong.  Don’t give up on me, because I will not give up, ever. TeamMarco@austin.rr.com