Running For My Life

When I was asked to start this blog about running in southern Arizona a few years ago, I decided to write about running and the way it affects our lives.  I didn't want to write about training regimens, workouts or running techniques.  I wanted to share the joy of running and the people and places that make it great.  Over the course of a few months I feel I did just that.  The experiences of Jolene Jones, running races and old friends inspired me – until my life took a hard left turn.  On April 4, 2009 I was diagnosed with Stage 4, Non-Hodgkin’s Follicular Lymphoma. Over the next few weeks, I hope you'll let me share my story of a sometimes hard, sometimes funny journey, and how I used running and the lessons it taught me to make sense of it all.

Spring 2007

My journey begins oddly enough with my left big toe.  I have bird feet, long skinny things with curled up toes, beat up from years of running and wearing too small shoes. In fact, I wore size 10’s forever because someone told me when I started buying dress shoes, to buy shoes that are snug, because good leather shoes would stretch.  I suffered through sore toes, achy feet and a limpy gait all in vain, waiting for shoes that never did stretch. It wasn't until my wife pointed out I was really a size 12 that I bought a pair of shoes that fit. That was a revelation, and one of the many reasons why I married her.

Anyway, I don’t like my feet very much, and I don’t like for them to be touched, hell, even I don’t like touching them.  But I notice that I can’t really move my left big toe – up, down, sideways, no matter how I try, it doesn't really move.  You know when the shoe salesman tells you to lift your toe? (You just did it, didn't you?) Well, I can’t do it.  Years ago as a runner in high school, I had a stress fracture in my foot requiring a visit to to a local podiatrist. He worked with the University of Arizona runners and world class athletes.  He was good.  25 years later I visit that old-time podiatrist and find that his attitude towards running has changed a bit.  He is worried about the condition and tells me in good conscience he cannot recommend that I keep running.  That is not an option, so I in good conscience look for another doctor that will give me better advice, advice that I will like.

1984 Sabino Cross Country Team.  25 years later, three people
on this team will help in the greatest challenge of my life.

But my left big toe starts the journey and leads me to a local physiatrist, a nerve doctor – Dr. Toby Freebourn.  It’s funny the way people come in and out of our lives. Toby is an old cross country teammate of mine from Sabino High School, a few years younger than me. I haven't seen him for in 20+ years and we take a few minutes to get caught up. We had a good team back then and it’s good to reconnect and catch up. Toby recommends a series of tests gauging the electrical conductivity of my nervous system. Basically these tests are zapping your nerves in a series of places to see how they are conducting electrical signals.  Think of sticking a fork in an outlet on about 20 different places on the left side of your body…yep, ouch.

We narrow it down to my left calf, a place about 6 inches below my knee where the nerve is losing its signal, causing the Mononeuropathy in my toe.  Toby asks if I’ve had any injuries or traumas that I can recall?  I can’t think of any.  He does mention that I have low levels of B-12, or ‘low normal’.  Absence of B-12 can be an indication and perhaps cause, neuropathy in the extremities. Many things can cause low B-12 – among them: trauma, poor diet, extreme alcoholism, Irritable Bowel Syndrome….and as I learn later, in very rare cases, Lymphoma.  Lymphoma? It is an initial clue….

September 2007

I notice that I’m going to the bathroom funny, but I think it’s related to my diet and really don’t think too much about it.  I’m running well but am often tired and exhausted.  But like a lot of men, I keep my health issues close to the vest.  I’ve not really mentioned to anyone what’s going health-wise outside of my big toe. I've been to neurologists, physiatrists, and other experts to see if i can fix my toe.  After about six months, I finally mention to my wife, Christina, about the bathroom changes. She scolds me and says I should go to the doctor, but like most men, I say, “Why, I’m healthy!" I run a lot, work-out, and I am in pretty good shape.

I schedule a colonoscopy in April 2008, a three-day process better left unwritten.  My bathroom habits and a hard mass in my lower abdomen, along with the colonoscopy results point to Crohn’s Disease as the likely culprit.  At the time it made sense.  Half my family has Celiac Disease or leads a healthier life by eating a gluten free diet, plus my mom is lactose intolerant.  I track my diet for a month but no real triggers (the usual wheat, lactose, etc.) make themselves apparent.  I go through suffering cramps every couple of months.  I think its spinach.  I jokingly ask my doctor if Crohn’s Disease can cause neuropathy.  Yes I’m told, because it screws the body’s ability to absorb B-12.  Perhaps the mystery of the toe is solved?

September 2008

The drugs intended to treat Crohn’s Disease - Endocort and Asacol - seem to work slightly, but I’m taking a lot of them.  Too much Endocort can lead to sinus infections, and low level colds, and I’m starting to get run-down.  It’s affecting my ability to run so I take myself off in September 2008 and stick with Asacol. But I’m still not getting better- I continue to run but am getting slower and slower.  I don’t need to be the best runner, but I’d like to improve, or at least be the same. I go back to my Gastro guy, Dr. Charles Sanner, the acknowledged leading Gastroentologist in Tucson. He does not have the best bedside manner, very analytical and evasive when it comes to answering questions, but he is very good at what he does.  He recommends a CAT scan in April 2009. I don’t know it yet but the train is leaving the station….

April 4, 2009

I’m at my mom’s house watering her plants while she’s on vacation.  My cell phone rings -   a direct call from Dr. Sanner’s office is odd because usually with him it’s an in-office consultation, never a phone call.  I answer and just like an office visit, he is very clinical, explaining things to me in a matter of fact kind of way.  A 20-second phone call changes my life forever.

"You have a tumor or a series of tumors in your abdomen", Dr. Sanner tells me. ‘The mass in your abdomen is an enlarged lymph node, Non-Hodgkin’s Lymphoma’’.  My mind is a blank. I panic and ask "what is that"? "Cancer" he says.  My mind is racing.  I should ask more questions but all I'm thinking, is Hodgkin’s bad, so non-Hodgkin’s is good?  I hang up and call my wife. I’m in shock.

My 2nd entry in this odyssey is here.