Running For My Life - Diagnosis

When I was asked to start this blog about running in southern Arizona a year 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. But my life took a hard left turn in April of 2009 when 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.  You can read the 1^st installment here.

April 2009

Dr. Sanner’s words keep me in a state of shock for days.  I keep thinking that maybe I heard him wrong, or that the CAT Scan could have been mis-read.  Anything but this.

For good or bad, I’m an information junky.  My background is in broadcast journalism, and I religiously follow the newspaper, entertainment industry, and other news outlets. Let’s just say I have a need to know what’s going on.  My online research leads to wildly different expectations about Non-Hodgkin’s Lymphoma survival and treatment.  34-months average life expectancy, although remission is highly possible, some treatments work better than others and even a possible vaccine.  I’m confused.  Is this treatable or not? How long do people live with this crap?

Dr. Sanner refers me to the Arizona Cancer Center, one of the top rated Lymphoma research/treatment facilities in the country.  On my first day I’m met by a concierge (no kidding), and given a tour of the facility. I’m apprehensive, scared and overwhelmed having to be here, but this really helps. I feel lucky to get referred to Dr. Daniel Persky, a smart, young and cocky doc from Russia who is just 34-years-old.  I like him.  He answers all of my questions, allowing me to entertain different ‘what-if’ scenarios, but always focusing on treatment.  He estimates that I am likely at Stage 3-4, but to be sure, he orders another CAT Scan, blood work, a bone marrow test and a biopsy a few weeks later.  My surgeon at the University Medical Center is even cockier – like my pilot friends in the Air Force – I want my surgeon to be cocky, have confidence.  Instead of opening my abdomen to get a sample, he goes through my belly button, leaving no visible scars.  Wow.

May - June 2009

I go through all of my tests with flying colors.  Although to fully ‘stage’ the disease they conduct a bone marrow test to see if the Lymphoma is present. This one is the hardest.  Throughout this process I keep getting comments about my low heart rate – in the 50s, my veins –“awesome”, and my bone density.  This secretly pleases me as I am competitive and proud to be in good shape.  Sandy Curtin does my bone marrow test – basically they stick a corkscrew through the hip bone and pull out a core sample.  She is visibly sweating and breathing heavy after the procedure because my bones are dense.  She comments that she may have to start doing arm exercises if I come back.  It doesn’t hurt to stick the corkscrew into my bone marrow, Lidocaine takes care of that.  It hurts when they suck the bone marrow out – hurts like hitting your funny bone while getting an electric shock at the same time.  I yell a little bit, and keep the joy that she had to work so hard to get it, to myself.

Early June at my appointment for official staging and I’m nervous, hopeful, scared; you name it and I’m feeling it today.  Dr. Persky gives it to me straight. Non-Hodgkin’s Lymphoma, Type B (10% involvement in the bone marrow), Follicular Lymphoma, Stage 4.  Basically a slow growing cancer that I’ve probably had for the past 3-4 years. Crap! Unfortunately I've learned a lot about cancer with family and friends suffering from different types of cancer in the past few years.  All I can think is that Stage 4 with most cancers is BAD.  But Dr. Persky assures me that Lymphoma is different, that staging has everything to do with size, bone marrow involvement and other factors.  My node is approx. 11 cm by 5 cm.   Normal size averages 1 cm X 1 cm.

Although it has shrunk by tenths, Persky reminds me that lymph nodes will “wax and wane”.  I have no other symptoms other than being tired – but I’m always tired.  Dr. Persky recommends treatment. “What will happen if I don’t?" I ask.  “We will watch and wait”, he says.  “Wait for what?", I say.  “For something to happen”, he says ominously, pointing his index finger at my stomach.

It is a difficult decision, but I elect to forgo treatment for the time being.  I realize that I am apprehensive and looking for a way to postpone it.  During this process I’m introduced to Low Dose Naltrexone.  An experimental drug for auto-immune disease, its traditional use in the regular dose is for severe alcoholics. Taken at night, at 1/10 its regular dose, it is thought to interfere with production of certain cells that indicate Lymphoma, MS, HIV, etc. I am excited at the prospect and it makes it easier to rationalize my decision.

Summer 2009

I’ve only told a handful of friends and family about my diagnosis, preferring to keep the news to myself.  I guess I don’t want to deal with explaining the process, the diagnosis and the disease.  I prefer not to think about it.  Perhaps it will go away.

All summer I’m feeling great, enjoying getting back to running to take my mind off the past few months.  In July, I take 3^rd in my age group at the City of Tucson Cross Country Meets Grand Prix and run a 6:20 mile and 2:48 half-mile with hardly any training.  By August I am running great, getting lots of comments that I am doing secret training on the side.  I’m not, just running twice a week.  I’m excited at the prospect of the upcoming racing season.

September 2009

A run in Prescott leaves me exhausted and tired, but I credit it to the mile-high altitude.  However, I notice that I am just tired and dying at the end of all my workouts.  My quads are heavy, my breathing is hard to regulate and I don’t have the pep I used to.  I write it off to being in bad shape.  But I’m mad because my expectations are high.  I was an all-region, all-state runner back in the day.  I was lucky enough to compete in college.  I’m still competitive, but can’t understand why I’m not running faster.  I always, always attribute it to being out of shape.  That assumption is about to change.

You can read the next installment here.