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.

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 I 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 7^th treatment would’ve been required.  But chemo and my gut want to race me to the finish, make sure that I know they came to race.

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

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.

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 oversized 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.

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.

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.

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.

Tucson runner Jolene Jones overcame life threatening illness to run her personal best and win her age group at the Saguaro National Park Race.

A beautiful run through the pines of Prescott, Arizona and Jolene Jones was sure her shortness of breath was due to running in the much thinner air of this mile high city.  The sharp pain preventing her from sleeping the next day led her to believe it could be more serious. Jolene didn’t know what was wrong, she couldn’t breathe, her doctors prescribed anti-inflammatory medication and she worried that she may have a broken rib or a strained muscle. However, a CAT Scan would point to something much more serious – Pulmonary Embolism – or blood clots in her lungs, not only affecting her breathing, but her body’s ability to transport life giving oxygen.
In just three short days after her Prescott run, she would be on oxygen and blood thinners fighting off blood clots that had invaded her lungs due to prescribed medications.  Jolene would spend the next three weeks almost in a daze, very lethargic, with daily trips to the doctor followed by oxygen and almost constant sleeping.

So begins Jolene’s New Year 2009, a scary episode in the life of this vibrant, active and determined young Tucson woman.  Leaving her to think what no 27-year-old should ever have to consider, “I don’t want to die, it’s not supposed to be like this.”

Surrounded by friends and family, Jolene could see the look of concern on their faces.  She tries to avoid it, but it seems everywhere she turns, there is another story of someone like her, someone that didn’t make it.  But Jolene has a unique outlook on life, much older than her 28 years.  She does not shy away from letting you know she has faced many challenges in her life, but is proud that this does not define her in any way.  “It gives me a good perspective and I wouldn’t change any of it” she says.   

Slowly the oxygen and blood thinners begin to work.  She begins to walk with friends, but is still concerned that a blood clot may find its way to her heart or brain.  Six weeks after Prescott, she returns to work full time.  A clear CAT scan in April gives her hope, but does not erase the fear of running, of taking those first tentative steps.  Encouraged by her running partners in The Workout Group, Jolene does take that first step.  Later that month, she decides to run in her first race.  She runs the whole way and finishes.  Paced by her Workout Group friends, two more races follow in May, each faster and stronger than the last.  As her health improves, Jolene begins to think “what if…?” 

Jolene began running several years ago to stay in shape, running fast was never the plan, “never on the radar” she says.  By June she is feeling as strong as ever.  The thought comes back, “what if…?”  She decides to go for it, tweaking her diet, adding miles to her weekly total.  By July she is running 40 miles a week, slim and feeling stronger than ever. Many of us didn’t see much of Jolene in the summer, but rumors were flying as reports of Jolene getting stronger and faster filtered in.  “Jolene is running 60 miles a week!”, “I ran with Jolene and she wasn’t even breathing hard”, “Jolene ran a 6:20 mile at the track meet”.  Each report always accompanied by a sense of awe and admiration.

Jolene set her sights on the 40^th Annual Saguaro National Park Race this past Labor Day.  She wants to run fast, but is unsure as the weight of her own expectations and those she perceives from her friends and family overwhelm her. “I’ve never been so nervous before,” she says.  To add to her jitters, Jolene has been selected as the recipient of the Southern Arizona Roadrunners’ Rob Bell Award.  Given to a local runner that embodies the spirit and the passion for running, the award memorializes local runner Rob Bell who passed away in 1999.  The jitters come because the recipient is announced at the Saguaro race to the crowd of 800 runners at the starting line.

Jolene’s race day goes by in a daze; she finishes the race in just over 61:00, on the hilly, eight-mile, gut wrenching course, far and away a personal best.  Then she’s on to the official presentation of the Rob Bell award from Rob’s family and past recipients.  Plaques, gifts, crowd recognition, all seem to go by in a blur. She reflects on her journey a few days later, “This has been the best year ever.  As crappy as some things have been, I have a real appreciation for what I’ve accomplished.”

So do we Jolene, so do we.

Oh yeah – Jolene took first in her competitive 25-29 age group…by nearly a minute.  But in reality, she has already accomplished much, much more than that.  She has her dreams back.