Non-Hodgkin’s Lymphoma is a crappy thing, even crappier when it happens to you.  I’d been writing for months about running, why it’s cool and the people that make it great here in southern Arizona.  That is until my life took a hard left turn with a diagnosis of Non-Hodgkin’s Lymphoma in 2009. So if you’ll allow me 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 previous installments here: Part One, Two, Three, Four and Five.

December 2009

These next few treatments are the middle ‘laps’ of my race against chemo.  This is where I was best back in the day, putting the hammer down, throwing in a few tough laps, making it hard for my competitors to hang on.  Get ready Mr. Chemo, it’s time for a few tough laps.  I may not be running anymore, but…

But it’s hard to get motivated and I’m really down about it.  It’s easy enough to be energetic and get up for one round of this crap, perhaps two, but the effects are cumulative and I’m tired.  I feel sick, look sick and am really dreading the upcoming holidays.  It will be hard to be festive about anything at this point.

Cancer patients talk about the phenomenon of ‘pre-nausea’ prior to treatment.  I know what treatment will do to me the next day and my body gets sick thinking about it.  I’m poked and prodded as usual, but Dr. Persky says he cannot feel the ‘tumor’ at all.  He can’t verify if it’s deeper inside, but it is definitely shrinking.  I am both elated and bummed, dreading the thought of 3 more months of treatment.

At the AZ Cancer Center I have a different nurse each time I go to treatment.  I’ve learned from others receiving treatments elsewhere that this is somewhat odd.  But it doesn’t bother me because I like to meet them and get their perspective on the process. I’ve mentioned my pride in my ‘great’ veins, but they are starting to get pissed at me, hiding out, making it harder for the nurses to find them. I’m becoming a pro at this procedure, this process of chemotherapy. The beeping of the machines, the other patients in my room, covered in blankets reading or sleeping seem normal to me. Other than a missed vein on the initial try, it’s a relatively uneventful day, but I’m not nearly as enthusiastic as the past two.  I focus on my computer watching TV shows and movies from iTunes…not talking anyone.

Mid – December 2009

I am now completely bald – over my entire body. Losing the hair on your head isn’t as bad as I anticipated; a hat covers that up no problem.  It’s the loss of your eyebrows and eyelashes that is the most disconcerting because they define your face.  Because of this, I find myself going to fewer and fewer places, not making eye contact or being the outgoing person that I’m known for. I feel really sick from the chemo, physically and emotionally a wreck. I basically check out, not seeing anybody unless it’s necessary.

I’m three days past the half-way point of my treatment and I think I might just be able to do this. I’m ‘racing’ chemo and think that I have the edge.  I pulled ahead in lap two, with a fairly easy treatment and have the lead and the crowd is cheering. But chemo is competitive too, and throws in a tough lap of its own.  I wake up one morning with slight cramping in my abdomen, but am not worried – it’s the cancer getting its butt kicked, right? Well I think the cancer was pissed because these are some of the worst stomach cramps of my life.  Every 90 seconds or so, pain so excruciating that I think it would be better to be knocked unconscious, followed by 90 seconds of relief. It’s just enough time to think they’ve subsided, until I’m cruelly reminded again that they haven’t. The cramps last for 24 hours. I manage to sleep about 6 hours that day – in 20 minute increments.  I’m exhausted.

I’m getting more emails from friends as the news of my Lymphoma makes its way around.  I feel bad that I didn’t tell everyone, but I didn’t want to be the ‘cancer guy’, didn’t want to talk about it.  The emails are from random people I know and have been both encouraging and supportive. My personal favorite is from Craig Dabler a local jeweler and a good friend from The Workout Group. 

Tim-

I thought you may get kind of a kick out of hearing this. While running with (XXXX) last night, she made this statement, “Tim’s wife is very lucky because Tim is both a nerd and real hot, which is an amazing combination!”

Just keep that to yourself.

Craig

I laugh out loud and feel great the rest of the day. I am a nerd, although ‘hot’ is a subjective term…

Christmas 2009

Christmas is fast approaching and I’m dreading the season already.  We have a family trip planned to Kansas and I loathe being the center of attention, getting the entire family’s sympathy for a week.  While they know what’s going on, I haven’t really talked to them. I email my family asking them to respect my decision to not talk so much about Lymphoma and rather enjoy a great holiday.  “Let’s focus on the new babies and joy” I tell them.

My treatment schedule follows a precise schedule, every 21 days I’m in the chair, hooked to the machine. I’m nervous because my 4^th treatment is two days after I return from Atwood, a small town in northwest Kansas.  I’m even more nervous because the forecast calls for snow, followed by more snow.  My fears are realized as the storm proceeds to shut down large portions of the interstate, preventing me from catching my Saturday flight.  On top of everything else, several family members are starting to get sick – a horrible fear of mine, as I have been ultra careful not to get sick.  If I show any sign of illness, I’m not allowed into chemo.  I wind up spending the majority of the time by myself in a small room at the It’ll Do Motel.  Fortunately the storm clears Sunday morning and I’m able to make it home for treatment.  Oh joy.

December 28, 2009

Because of skewed travel arrangements, our friend Artie gives me a ride to the Cancer Center.  Artie is a good friend, a former professional dancer and instructor. He gave us dance lessons prior to our wedding 10 years ago, as we wanted to do more than ‘circle dance’.  Artie is a great instructor and actually gets me through a dance in front of 250 wedding guests. I’ve accomplished a lot in my life, but this dance ranks right up there. Top 3 probably.  It was more nerve racking than any major race I’ve ever run.  The funny thing is in order to learn the steps; I occasionally have to ‘dance’ with Artie. To this day, I tell anyone who will listen that Artie is the smoothest partner I’ve ever danced with…

I’m encouraged that the doctors can no longer feel the lymph node in my abdomen.  It is continuing to shrink, although my white blood cells are having a tough time rebounding from treatment.  If they are too low, the doctors may postpone chemotherapy.  I’m on the bubble today, but green-lighted for the chair.

Treatment 4 is fairly routine, however they want to administer the Rituxin at the beginning, a change from prior treatments. I question this and they check my protocol. “Why yes, Rituxin should always be delivered at the beginning”.  Crap!  I’m told this is not a problem, but I look at both nurses and say “well that’s fine, but I’m not coming back to redo the 1^st three treatments…”  I wink at one of the nurses, while the other nurse squirms.  They realize I’m teasing and we continue on our way.

Chemotherapy side effects are cumulative, and I continue to be more and more run-down.  It’s harder to rally, both physically and mentally. I find myself answering the question “How are you?” with a mild “I’m OK”, a big departure from normal upbeat self.

January 18

The last three weeks have been spent in a fog, ‘feeling thick’ with lots of sleeping.  I have a rough Sunday night, probably nervous for my 5^th treatment the next day.  Although my vitals are good, Dr. Persky is concerned with my white blood cells.  As he assigns me to a chair, he pauses to take one more look.  He says something is not quite right, and he “can’t make the total add-up, so no chemo for you today”.  Crap!  All this anxiety, the pre-nausea and stress for nothing.  I have to come back in two days.

But even that treatment is in doubt.

The next entry is here.

I started this running blog in the spring of 2009.  I thought it would be fun to write – not so much about training – but the love of running, the camaraderie, the joy it brings to people.  I started off tentatively, but hope I have developed a voice that conveys to people the FEELING running invokes.  I’ve met some cool people, attended some great events and hopefully conveyed that to my readers.  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. You can read previous installments here: Part One, Two and Three.

Late October 2009

I feel great the week of treatment once I get by Tuesday’s chemo ‘hangover’. It’s probably the Prednisone.  I even play golf the Friday after treatment with a group of friends and have a great time. But then Saturday hits me square in the gut. I wake up in the morning with horrible stomach problems.   My guts feel like I ate a bowl of melted cheese, with a side of melted cheese and a little man is inside me churning his way through the melted cheese.  I can’t think of another way to describe it – a stomach full of melted cheese. I have cramps, feel disjointed and distended and cannot get out of bed.  I can barely move all day.

The next day and I’m a still a wreck and dog-tired all day.  I’ve been warned about the side effects of coming off Prednisone.  I’m taking huge doses during the first 5-days of treatment, but then get cut-off until the next cycle in three weeks.  I’m jittery all day with my emotions swinging from anger, to sadness and overwhelming frustration. The broccoli I’m chopping for dinner doesn’t stand a chance.  I have to go outside and take a breather. If I didn’t feel so crappy, I would go for a run to chill-out.  It doesn’t matter, I need to do something about this; this cannot be healthy.

I will continue to feel like junk through the chemo downtime.  While I can function and get through my daily routine, I have a constant, underlying feeling of fogginess, aches and a general malaise.  It is a feeling I will come to call throughout this entire process, as ‘feeling thick’.

November 2009

They’ve warned me to expect the side-effects I’m having, along with hair loss in the first 10 days.  But here it is 10 days post-treatment and, while I do feel like crap, still no hair loss. Win!  However, just a few days later I wake up with my scalp burning, like that feeling you have when you bump you head on an open cabinet door.  As I try to recall the incident, I panic and realize this is the first sign of my hair falling out.  There is no visible loss and Christina doesn’t see anything, but it still disconcerts me.  I usually wear my hair short, and a little spiky, and my fears are soon realized as I put product in my hair and tufts of it stick to my fingers.  I’m looking like a bad radiation special-effect from a B-movie.

I decide to get my hair cut SHORT this week; ‘high and tight’ we used to say to our ROTC friends in college.  I figure that once my hair falls out in 2 – 3 weeks, most people will be used to me with little or no hair.  I use the free coupon to Sports Clips that we handed out at the Pumpkin Race to all runners, but chicken-out on getting it shaved.  The girl cutting my hair flirts with me, telling me how ‘cool’ it looks and that it makes me look ‘young and hip’. Right.  I know she is lying because it doesn’t fit my big, giant and now almost bald head.  She’s looking for a tip, and I’m not mad, just laughing about it. I tip her the amount of the haircut – $13.

I’m starting to get odd emails from people I don’t really know wishing me well, and runners have started talking about it in the community.  I started this treatment process in April, wanting to keep it close to the vest and not tell the world.  Handle it on my own. The reactions from the few I’ve told range from shock, concern, jokes, personal stories and even separation.  Everybody deals with it in a different way, but I guess I should have realized that not everyone will keep it as close to the vest as I would want.  Exactly the opposite of what I wanted to do, control the message.  Maybe it’s because I don’t want them to feel sorry for me?  Think less of me? 

I’m having constant dreams about hair loss – but on my calves.  In my dream, I’ve lost hair on my calf in odd, geometric designs.  I know this is an allegory of my fears of losing my hair in patches.  My hair continues to fall out and I continue to ignore it, choosing to see the remaining hair ON my head, (not on the floor or in the shower), like a true bald dude. But when I run my hand through my hair, it looks like I’m petting a shedding dog, large chunks of hair floating through the air to settle on the floor.

November 15 – Is Bald Beautiful?

It’s November 15 and my hair is really starting to fall out in clumps.  I make the mistake of blow-drying my hair this morning (well what’s left), and I feel like a balding guy in a wind tunnel. 

I decide it’s time to buy a hat, so it’s off to the mall to see what I can find.  I have baseball hats galore, but I want to find some cool hats that will cover more of my head.  I’m all over the mall, but can find nothing except hats for people with tiny, perfectly shaped heads.  I finally stumble into the Hat Works – duh, that’s all they do, hats. They have a wide variety of hats (logo hats, stretch, etc.), but I want to look cool, not hip-hop or like a skater boy.   I try on a million different hats while this poor kid behind the counter watches me with a wide-eyed, horrified look on his face.  I think he is judging my selection of hats, but soon realize that each time I try on a hat, more and more of my hair falls out.  By the end of my time there, my hair is a matted, patchy mess.  I pay for my hats, trying not to make eye contact and get out of there. I still wonder what was going through his mind that day.

When I get home I shave the rest of my head with a razor. Now, I’m totally bald and have chemo the next day. This sucks. I could get through one round, but five more times? Ugh.

The next entry is 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. 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.