I started blogging about running in southern Arizona last year, but when my life took a hard left turn with a diagnosis of Non-Hodgkin’s Lymphoma in April 2009, I started a journal of my experiences, chronicling the good, the bad…..and the ugly. So, 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.  Follow the links to read the 1^st and 2^nd installments.

September 12 – The Ride Begins

If my diagnosis on April 4 was a life-changing day, then September 12^th was ‘wake-up and smell the coffee day’. I’m competing in a local race, and even though I feel out of shape, I’m excited at the prospect of gauging my fitness and posting a good time.  The gun sounds and I’m out good in the 1^st mile, but I absolutely struggle after that. Running through the course, I can barely lift my legs, breathing is tough and I struggle to cross the finish line ahead of some of the walkers. What the hell?

Fortunately I have a routine visit with my primary care doctor, Dr. Alok Sharma, scheduled the next day.  I mention being tired and exhausted, tell him about the race.  He is concerned and does a blood test in his office.  He calls me that night, says he is worried and may send me to the hospital for a transfusion, as my hemoglobin (red blood cells that carry oxygen) counts are below 9.  A healthy man my age should be at 14 – 18.  No wonder I can’t breathe.

Instead of a hospital visit, Dr. Sharma has me come in the next day for a review.  He tells me, in his delightful, East-Indian accent, “I am very impressed Tim, you have been running with such low blood levels.  Your tolerance for pain must be very high?”  I secretly like this.  Runners do have a high tolerance for pain and his comments make me feel good, but I’m pissed because I’m competitive – I want to have high blood levels, better than anyone else.  He suspects I’m losing blood internally, perhaps a slow bleed or tear somewhere?  He recommends a colonoscopy the following week.  Man, I am becoming the king of colonoscopies.  My old friend, Dr. Sanner confirms those fears, noting the large lymph node in my abdomen is causing ulcers on my lower GI tract, leading to a slow bleed. Now I understand what Dr. Persky was “watching for” while we were “waiting”.

October 2009

It’s early October and Dr. Persky tells I can no longer delay treatment for my Lymphoma.  I have several options, but considering the severity of my cancer, I opt into a clinical trial he has developed, combining three of the most aggressive and effective therapies.    It includes a series of six chemotherapy treatments, followed by radio-isotopes delivering targeted radiation and then Rituxin ‘maintenance’ for a few years.  Most people with Lymphoma receive just one or two of these. I’m confident it’s the right move and sign up on the spot.  I select October 26^th as my start date, again delaying this thing as long as possible. October is a busy month for me, including a Mexico vacation and an event I’ve been planning for months.  I can’t get bogged down with treatment, right?

I hustle through the same tests to ‘re-stage’ my Lymphoma (CAT Scan, bone marrow, etc.) as before, because we have a weeklong trip to Cancun planned in just a few days.  An all-inclusive stay at Moon Palace paid for by my wife’s company – Arbonne.  We proceed to eat, drink, swim and relax.  It’s a nice break, but always the 26^th looms over my head, the day I start treatment.

It’s Saturday, October 24, and I’m at The Great Pumpkin Race, an event I’ve been planning for months. Past editions of this race had only 50 – 65 runners, and I’m not sure what to expect. But on this day, more than 500 runners show up, clearly a victory for all involved.  But I’m overwhelmed, exhausted and nervous. I’ve been able to keep myself distracted this month with everything, but it hits me on the drive home – I start chemo on Monday.  I start to cry.  I cry writing emails thanking my friends for their help, I cry like you do at those g-damn Christmas commercials when you’re home by yourself.  I’m sobbing.  I don’t know, is crying good for me?

 October 26 – Get on the Bus

Monday arrives and we head early to the Cancer Center, and instead of a shared treatment room, I am assigned a private infusion room at the Arizona Cancer Center.  Wow, this is too cool – the private room has cable, wi-fi and snacks. Nice.

Sara is my nurse all day; she has 22-years experience and a calm demeanor.  She tells me I have nice veins, making me laugh. For some odd reason, I’m always proud of this. She explains the process, easing my fears and making me feel better.  It gets even better when she gives me a big shot of Benadryl (for anticipated histamine reactions), kind of like a double margarita at 10:30 a.m.  This is going to be OK.

I started the steroid, Prednisone this week to offset any expected side-effects and I feel great. I’m flying through the regimen and I’m excited because I’m not having any of the nausea or side-effects Sara asked me to track on.  We jump right to Rituxin – a drug specifically meant to fight Lymphoma. I have an initial chest tightness, but I don’t tell her as it goes away in a few minutes.  It feels similar to an asthma attack.   But half-way through, another chest tightness that I can’t shake, even with all my tricks of controlling my breathing and slowing my heart rate I learned as a competitive runner.  Nurses are called, doctors, etc.  I’m pissed because they mention keeping me overnight.  I want this to be done TODAY.  Thankfully, some additional Benadryl kicks in 30-minutes later, making everything good. 

I think about my local running club – The Workout Group.  I’ve made good friends there and have found a ‘core’ bunch that matches my speed and fitness level.  At the end of a hard I workout,  I always like to talk a little smack.  “Hey, want to race to the finish? Wanna bet?” I’ll ask, adding, “how much money do you have in your pocket?? – let’s go!” as I speed off ahead. Cash is very rarely exchanged, but it’s a fun way to end the night.

I find myself doing the same thing with my cancer nurse.  It’s coming to the end of a LONG day and it’s a guessing game about what time I’ll be done.  I do the math in my head and say 6:35 (the nurses guess 7:00) and “will be heading out at 6:36”.  I ask her how much money she has in her pocket, “wanna bet?” The last bit of Rituxin drops into my vein at 6:35, but since there is only one nurse on call at the time, she doesn’t get to my room until 6:38.  I count it as a ‘win’ anyway.  Anything to make this day a victory.

Walking out of the Center, I’m foggy and feeling like I’ve been drinking beers since 10 a.m., stopped at 4 p.m. and here it is 3-hours later with no sleep and I’m feeling wide-awake, hung-over.  Yes, it’s scary I know what this feels like.  Tuesday I wake up feeling like shit, head thick, mouth dry and voice crackly deep, like I smoked a pack of cigarettes along with the beers.  Surprisingly, it is like a hangover, my throbbing head and fogginess get better throughout the morning.  This may be OK.

Think again.

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.

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.  The experiences of Jolene Jones, running races and old friends inspired me – until my life took a hard left turn.  In April of 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 (I wore size 10’s forever until my wife pointed out I was really a size 12) because someone told me years ago that good leather shoes would stretch.  I don’t like my feet very much anyway, 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 it doesn’t really move.  You know when the shoe salesman tells you to lift your toe?  I can’t do it.  I visit my old-time podiatrist that I have been going to for 25 years.  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.

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 that I haven’t seen in 20+ years.  We had a good team back then and it’s good to reconnect and catch up.  I go through a series of tests with him – basically 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 –‘low normal’.  Absence of B-12 can 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.  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.  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, etc.  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 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 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, – 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.