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.

When asked to write this running blog, I thought it would be fun to share the love of running, the camaraderie and the joy it brings to people.   I’ve met some cool people, attended some great events and hopefully conveyed that to my readers via my writing.  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 own 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, Three and Four.

Mid-November 2009

I’m in a common room today with three other people.  It has all the benefits of the private room (wi-fi, snacks, etc.), but no TV.  But I’m smart and bring my computer with some movies and TV shows. My mom came with me today and sits through the doctor ‘pre-approval’ process to ask a few questions. I always try to bring someone with me during this time, to help track on my questions and be sure we get all the information.  Dr. Persky tells me my blood levels are on the rise and the platelets look good.  I’m still run-down, but this is encouraging.  He measures my tumor by feel, pressing on my abdomen and estimates it at 8 cm – it was originally 11 cm, so this is great news.  Woo hoo!

I feel 100 times better today than I did last time, although they did start me off slowly on Rituxin because of the reaction I had last time.  But by the end I was on full-speed ahead and would be green-lighted for round three.  From the time I’m in the treatment pod, I have a needle in my vein and am connected to a drug-dripping machine.  Thankfully they are mobile and I move around a bit to chat with the other patients.  I challenge a few of them to a race around the pod, ‘for money’.  It gets a laugh and I smile.

It does help to think of my chemo treatment as a ‘race’.  In high school and college I ran a variety of distances (800, 1500, 3000, 5000, etc).  Each race had a different strategy; in fact each lap of a race had a strategy.  ‘Get out fast in lap 1’, ‘extend your separation in lap 3’, ‘save some juice for the last lap’, etc. Thinking about this, I realize my chemotherapy is a six-lap ‘race’.  I just completed lap two, positioning myself to make a move.  This gets my competitive fire up and I decide I’m going to kick chemo’s ass.

The week of treatment follows the similar pattern to last time, but I’m ready for it this time with some medicine and foods I like.  I find that I’m craving foods that I haven’t in some time – tomatoes (which I eat like apples), grilled vegetables, etc. But unfortunately there are whole other groups that if I even think about, I get nauseous. So long turkey sandwiches, good bye bananas, I’ll miss you.  But this craving isn’t always good as I’ve found a renewed interest in Jack in the Box sausage croissants.  They are little nuggets of manna from heaven.

I continue to ‘feel thick’ during the weeks after chemo, but I’m managing the physical effects fairly well by listening to my body and taking some prescribed medications.  However my emotions are out of whack. I’m a lot more liable to swing from one end of the spectrum to another.  Songs, movies, commercials and pictures can make me tear up in a second, I am a crying machine.  Man, I cry a lot.

Thanksgiving Weekend 2009

I went to The Workout Group for the first time in a few months to coordinate the teams for the Thanksgiving Cross Country Classic.  Our group always enters several different teams to compete for the team title and coveted bragging rights.  My team, The Slow Old Goats will not have a shot at the title, but we are savvy smack talkers and will come away with stories of how great we could have been.

The Slow Old Goats. We may be Slow, but we're Old.

I’m having a hard time talking to the group as my voice is very hoarse from all the drugs and Prednisone.  With my drawn face and obvious hair loss (despite a hat), it’s clear something is wrong, but not everyone knows.  One of the WOG members sends me a Facebook email later that evening:

Tim-

I hope it’s okay that I ask this…
Are you okay?

XXXXXXX

Crap. I know they are trying to be a friend, but this reinforces the fact that, not only am I sick, I LOOK sick.  I get on the web and look at side-effects for chemo, especially the physical changes.  It just leads me down the road of statistics and survival rates, not very encouraging.  I vow not to look at these sites again…

Thanksgiving Day 2009

It’s been 10 days since my last treatment, typically the ‘nadir’, or low-point of my blood levels.  So it’s no surprise that I run horribly slow at the Thanksgiving Day Race.  Breathing is difficult and legs still heavy.  Some of my friends offer to run with me, but they basically would be walking.  I find myself running the course with an 8^th grader at Orange Grove Middle School.  He asks how long I’ve been training for this race.  “28 years, how about you?” I say.  “Two-weeks”, he replies.  We run together and he wants to walk but I tell him there is no walking during a race, encouraging him to continue on, which we do slowly.  Towards the finish he is dog-tired and wants to walk.  But I tell him no, we have to finish strong, and “look good for the ladies” while running across the finish line.  He sprints ahead of me, beating me by a few seconds.  I email his coach later that day, a friend of mine from high school, telling him to get the kid out for track.  I find out later that my 8^th grade friend is now well on his way to a rewarding running career.  

November 28, 2009

Facebook has provided me with an avenue to reconnect not only with friends, but old teammates and competitors from high school and college.  So when I’m invited to an ‘old-timers’ reunion in Tucson, I’m all in.  I try gamely to run the 2-mile course but couldn’t finish as my legs were super heavy.  Andy Chase, an old friend and competitor from Sahuaro H.S., makes my day though. He has edited an old video tape copy of the 1984 State Cross Country Championship with awesome footage of us and our old friends and teammates.  We marvel at our skinny selves and lament how long it’s been since we were fast.  1992 United States Olympian in the steeplechase, Danny Lopez, makes an appearance in the video and we laugh because we used to beat him a long, long time ago. Overall, it was just a great day.

But what I didn’t know, this was the last day I would run during my treatment.

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.