Running For My Life - Follow The Path

Non-Hodgkin’s Lymphoma is a crappy thing, even crappier when it happens to you.  I’ve been writing for about a month about my experience dealing with Non-Hodgkin’s Lymphoma. Your feedback has been encouraging, uplifting and has often made me laugh.  But it’s time to get back to writing about running, why it’s cool and the people that make it great here in southern Arizona. Even though I have to do a few things to keep my Lymphoma in remission, I'm moving and looking forward. So this will be my last entry about my ‘race’. You can start at the beginning here .

March 17, 2010

I always looked forward to this time after treatment – 30 days after my last chemo, when the drug would truly be out of my body.  I didn’t know what the results would be, but I’ve been excited to get back to running.  Running to me is about being outside, experiencing the environment with friends as much as enjoying the run.  Spending time on the treadmill 1-2 times a month just hasn’t cut it, plus I’ve been much more tired and drained than I thought.  The stories about people maintaining a normal training regimen during chemotherapy seem overwhelming to me. Lance Armstrong, you are my hero.

Mike Greene, who talked me into running high school cross country 25 years ago, and I have kept in touch every few months for the past few years.  We talk about running together but never have since high school.  Mike has a busy family and injured his foot a few years ago.  I called him after my good news and suggested we go for a run, ‘for real’ this time.  I tell him I need to jog-walk for a while, but would be happy to at least start with him.  He is in the same position as me, excited to get back into running but has been looking for a slow training partner, so we fit perfectly.

March 24, 2010

I lace up my running shoes in anticipation of getting back to what I love and take note that I still can’t move my left big toe. I smile, remembering the odyssey this numb toe started me on, the questions it made me ask.  I was concerned then, but today I don’t worry so much about it, because my future has changed.  I don’t know what the it will bring, but if I can get through this crap, I can do just about anything. I’ve met some amazing people during this journey and I’ve learned from them that your life is now defined by a ‘new-normal’, the state that your life is forever in post treatment.

From the Tucson Racquet Club, we decide to follow the Rillito River Path which allows us to set an easy pace on a flat path.  A popular and busy thoroughfare for runners, bikers and walkers, the path is a perfect place for us to start our journey.  While warming up and stretching, we laugh about our decision to join the cross country team in the fall of 1981, oh so many years ago.

I’m excited to get started and we start our walk/jog on the path, with good conversation, acknowledging those coming the other way.  A pleasant looking man and his wife are walking toward us, and as we say hello, I realize that it is John Brooks, our cross country coach at Sabino High School with his wife Carol.  What sort of universal cosmic karma has placed the three of us together at this point nearly 30 years later?  John Brooks, or Mr. Brooks as he is forever known, is the sort of teacher and mentor that you remember for the rest of your life.  Everybody has those 1 – 2 teachers in their lives.  He is mine.

We exchange pleasantries, talking about running and the beautiful weather.  I tell him in a few short minutes about my recent battle and he encourages me to keep up the good fight.  A two-minute conversation at best, with the man that has influenced my life immensely, and we’re off to run and walk.

Mike and I exchange emails a few days later, amazed at the wonderful coincidence of this meeting. But as I reflect on this, I realize there are powerful forces at work in the universe. While Non-Hodgkin’s Lymphoma may have put me on a year-long journey, I realize I have really completed a 30-year journey.  That moment of panic from a scared and nervous 14-year-old, deciding to join the high school cross country team, has given me the tools to complete the most important race of my life as a 43-year-old man.

That decision – to become a runner – has come to define me.  Being a runner provided me with the skills, fortitude and competitiveness to win this race against Non-Hodgkin’s Lymphoma and chemotherapy.  The fact that I started both of my running careers, in 1981 and 2010, with the same people has to mean something, right?  Mike Greene and Mr. Brooks set me on this path. I was lucky enough to begin one journey with a good friend and mentor, but a second time?  Running with the life-long friend that cajoled me into going out for the team in the first place, and then ‘randomly’ meeting the man that started me on the path nearly 30 years ago? It’s not random and I realize there is a plan, a path to follow.

I am forever changed, but I will always be a runner.

Tim Bentley, Mr. Brooks, Dr. Toby Freebourn, Michael Greene, and Ross Martin.
12-2 in 1984 and still in love with running in 2011.

Running For My Life - The Verdict

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. I've appreciated your encouragement of my sometimes hard, sometimes funny journey, and how I used running and the lessons it taught me to make sense of it all. You can start at the beginning here.

February 10

My last treatment day has arrived and as usual I’m in early for blood work – but there is an uneasy feeling in the air today.  The doctor is unusually late and I’m nervous about missing my start time in the chair.  Again, my blood levels are perilously close to not allowing me to move on to chemo, but the combination of several factors puts me just over the limit.

I’ve been envisioning this day for months.  In fact, it has been the benchmark of my treatment – ‘If I can just get to treatment six, everything will be okay,’ I tell myself. I want this day to be great, to be excited about the last ‘lap’ of my ‘race’ against chemo.  However, there is a new nurse on the floor, someone I’ve not seen before and she is in TRAINING.  No offense but I don’t want to be a practice patient for anyone, especially at the end of all this crap.  She has a hard time finding a vein and can’t get the blood to draw back into the needle like it’s supposed to. She tries twice before I demand an experienced nurse to find the vein. I’m upset and angry because this is supposed to be a good day. But unfortunately the tone has been set for the rest of the day…

Ongoing

I’m not sure what I expected on this last treatment.  I feel so far away from the optimistic patient from October.  I’m angry, pissed and yet excited to be here.  I didn’t really believe that just because I had my last treatment that things would miraculously improve.  However, I did delude myself into thinking that once my 6th treatment was done, things would take a turn for the better. But I’m exhausted, run down and generally in poor spirits the entire three weeks after treatment.  My hair is still gone, eyebrows and eyelashes non-existent and a sunken face in the mirror to remind me I’m a chemo patient. I try not to go anywhere I don’t need to. I realize that the true ‘red letter’ day would be March 4, the day after a non-existent 7th treatment.  But chemo isn't done with me, wants to show that it will not leave me as easily as I'd hoped.

Two weeks after treatment I suffer through some of the worst side effects I’ve ever experienced, wishing that someone would, please, please, put me out of my misery.  I’m in my last lap against chemo and he is as tough as I was back in the day.  I suffer through two rounds of the horrible cramping I’ve had before, with debilitating cramps every 90 seconds and fitful sleeping in 10-20 minute increments.  I’m not sure, but I may be the only man that knows what it’s like to go through child birth.  I feel like I’ve done 200 sit-ups an hour for three days in a row.

Early March

Uncle Timmy with Nephew Patrick Bentley

My 8-year-old nephew is scheduled to visit Tucson during spring break for 10 days.  I know I look different and I’m worried that he will feel awkward around me because of the way I look.  I call him and say “I’ve been sick and the medicine I had to take made my hair fall out.  I’m not contagious, and I’m excited to see
you, but just know that I look different.”  He makes my day by saying, “Uncle Timmy, I love you no matter what!”  He proceeds to wear a hat just like mine his entire visit, looking much cooler than me, just a burst of joy during this horrible time.

A few days after my nephew arrives I stagger into the Arizona Cancer Center hoping for any good news at this point. The doctor obliges and tells me that my blood levels are ‘awesome’, hemoglobin and white blood cells are high, and everything else is normal. They cannot feel the lymph node at all and they are confident that any residual NHL in my marrow is gone (it started at 10%).  I’m worried about the cramping, and while they think the worst is over, they prescribe some meds just in case. I happily feel like crap with this good news.

March 10

It’s been a month since my last treatment and I’m in for a CT Scan to get a look at the lymph node in my abdomen.  When I arrive there is a young girl probably 14 – 15 in the lobby.  She has no hair and obviously had some sort of brain surgery based on a large scar across the side of her head.  She has just thrown-up as I walk in and is crying, begging to go to her appointment. Her young mother tries to calm her down with no success. But the staff tells her that it will be a while for the machine to open.  My journey is nothing compared to hers and I gladly offer my slot and she is able to get in right away.

March 15

I’m nervous today because I will learn the results of the CAT Scan – plus, there will be another bone marrow test.  However, I’m excited to be here because I’ve been feeling good, especially now that I’m out of the Chemo phase.  My hair is growing back, I need to shave almost every day and my appetite has been good.

I don’t let the medical staff do any tests until the results of my CT Scan are revealed. I’m told the lymph node has shrunk nearly 90%, and along with my blood work, I should be 'very, very, very, very happy' (I know, I counted the number of ‘verys’).  There is not a typical marker for NHL, but all of my levels indicate that my bone marrow is producing the right kind of cells for my body.  My hemoglobin level is at 14.1 (men should be 14 - 16).  You'll remember in September 2009 they were in the 8.0 range because I was bleeding internally.  My lymph node is 2.8 cm (typically about 1 cm), but mine should continue to shrink with the Bexxar (radiation) treatment in two weeks.

I’m optimistic and apprehensive about the results, but am anxious to get back into running and being fit.  Oddly, I’ve put on weight during this process, and while not a bad thing, it is not ‘good’ weight.  I wonder if I had the level of fitness I had before – with Stage 4 Lymphoma rampant in my body – how will I feel now?

I’m asked if I’m excited by the news.  I don’t know – the prognosis is now much better than before, but it hasn't sunk in yet, but the treatment really did seem to work.  I also know the prayers, energy and well wishes of my family, friends and supporters played a part too.  The way I look at it, I'm half way through, but this first half was probably 95% of the battle.

March 17, 2010

Almost a year from my diagnosis and I receive a call from the Arizona Cancer Center.  Test results show no involvement in the bone marrow – a big fat 0%!  This is great news, although I’m apprehensive as to what it actually means.  I ask with all the recent test results, when might we be able to talk about remission?  I’m thinking it may be three months, I’m not really sure.  “You can say it right now” they say.  “Really?” I ask. “Yeah, go ahead,” they say.  I say it out loud, “I’m in remission…I’m in remission, baby!”  I’m through the roof, relieved, excited, and in shock, crying.  But for the first time in a long time when I cry, I cry in overwhelming relief.

I think, chemo, I kicked your ass.

But I wonder – can I run again?

The last entry is here.

Running For My Life - A Punch to the Face

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. I've appreciated your encouragement of my sometimes hard, sometimes funny journey, and how I used running and the lessons it taught me to make sense of it all. You can start at the beginning here.

January 20, 2010

I’m apprehensive going to treatment today because of the delay due to my blood levels two days ago.  I’m visited by the same pre-nausea and anxiety as last time and dread this 5th treatment.  I’m really getting tired of this.

Throughout this process I’m always impressed with the timeliness and efficiency of the Cancer Center staff, nurses and doctors.  Patients receive a pager at each visit, kind of like those at The Outback or Applebee’s, you know the circular round ones that vibrate and light up when your table is ready.  At the Cancer Center they have a digital screen directing you where to go, and always end with ‘have a great day!’  Really? Thanks…

After my blood draw the pager directs me to the infusion center with no visit to the doctor.  My blood levels must have passed inspection so it’s off to the chair. As usual I have a different nurse, a nice lady that introduces herself as a recent transplant from Ohio.  We comment on the snow and laugh that the weather is warmer back east than in Tucson.  She comments that my blood levels have risen dramatically since Monday, re-enforcing my thought that I am a 22-23 day recovery guy.

I’m always starving after my treatments due to the Prednisone steroids and purposefully empty stomach during a treatment.  I learned in the first two visits that anything I eat before a chemo session is automatically added to the ‘foods I will hate forever’ list.  In addition to the many side effects of chemotherapy (hair loss, tingly fingers, etc.), some patients also lose their sense of taste.  Oddly I’ve lost my ability to taste salt or hot spicy seasonings in all food.  I’m sadly reminded of this at the movies when I couldn’t enjoy one of my favorites – movie popcorn.  I guess on the flip side I could probably win a salsa eating contest if I was up for it....

My friend Randy Accetta called me to say hello and check in.  He mentions that my Workout Group friends have asked when I might be coming back.  I tell him that I’m waiting until after my treatments end, but I know the real reason is I’m concerned about the way I look and the reactions I might get. He mentions that many of my friends plan to run The Sun Run in a few days and would love to see me.  I reluctantly agree to go.

January 24, 2010

I do venture out early Sunday morning for the Sun Run.  I’ve been hesitant and nervous for a few days since deciding to go.  In fact, I’ve talked myself into and out of going many times.  But I’m up early on this cold morning and ready to go – I’ve even planned my wardrobe several days in advance with running clothes and a skull cap laid out well in advance.  I think I’m more nervous about the way I look, bald and somewhat gaunt, than seeing my friends.  On top of these worries, my voice continues to be hoarse from the steroids and chemo.  I sound like a teenager going through puberty.  It’s frustrating because I normally have a good speaking voice, able to talk to large groups and be heard.

I arrive at the race and immediately see some of my Workout Group friends.  I get lots of hugs and praise for seeing me and think this could actually be OK.  I’m there to take pictures for the Southern Arizona Roadrunners Facebook Page that I manage, so I get right to it.  I see more of my friends and am having fun as the race starts.  I find myself running from point to point taking pictures and cheering on the runners.  Being at a race always gets my competitive fire up and I especially love to cheer those in the back of the pack, 9 times out of 10 they smile or say thanks.

Towards the end of the race day they want to take a group picture.  I’m nervous about this and want to stay away from any photo ops – don’t want to get ‘tagged’ on Facebook. My friends keep saying that I can’t leave, pushing me to the front of the group   I realize why as Randy calls me up and presents me with an over-sized card with pictures and signed messages by the entire group.  It is very, very touching.  As they are assembled around me, I feel that a little speech is in order, my worst fear because of my voice and my tendency to cry at any moment.  I tell them that I’m glad I came to the race and that I didn’t realize how much I missed them.  I update them on my treatments and positive progress.  I can see many of them with tears and smiles and I almost lose it at that point.  Thankfully I didn’t, but I did cry on the way home.

Ongoing

This most recent treatment has kicked my butt.  I have been able to rally and shake it in 2-3 days during prior treatments, but I am wiped out.  A call to the Cancer Center isn’t encouraging either.  I’m reminded that chemo side-effects are cumulative and my symptoms are normal.  There is not much I can do except monitor my symptoms and take the meds they’ve prescribed.  So I continue to feel ‘thick’, sleeping a lot and hunkering down, waiting to kick it in on the last lap.                           

February 10, 2010

Tomorrow will be my last treatment.  People ask if I’m excited for this as if it’s Christmas or my birthday.  I describe the treatment process this way.  Imagine that someone is going to punch you as hard as they can in the face, in fact they tell you they are going to do it six times, once every three weeks.  Along the way, they congratulate you and tell you that things are going great and you’re really good at getting punched in the face.

So yeah, tomorrow is my last treatment, but it’s still getting punched in the face. Either way it sucks.

FYI - (I tell a different version of this story to my guy friends; it involves getting kicked in a certain place.  They wince, but they get it.)

The next entry is here.