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Physicality. It is a real word. For the longest time I didn’t think it was. I looked it up. I was wrong. I thought it was a word sportscasters made up in an attempt to sound intelligent during a … Continue reading
Those were the worst words I had ever heard. I was in 4th grade at the time. Baseball was my life. Spring was in the air and the season was just beginning.
A few days earlier, despite my refusal to acknowledge my severe stomach pain to myself or anyone else, and my strong denials to the contrary, my parents knew something was wrong. Not surprisingly, my inability to eat, drink, or even walk upright did not escape them. The following 24 hours were a blur. Partly because of the pain and partly because of the flurry of activity. I remember my parents taking me to the pediatrician and a subsequent hurried drive to the ER. I remember being rushed into emergency surgery that night and hearing from the surgeon the next day. He explained I was lucky he was able to remove my appendix before it ruptured. I really didn’t care much. I just wanted to get out of the hospital and back to the ball field.
A couple of days later, after willing myself to make countless laps around the ward with my IV pole in my hand, I convinced the doctor I was doing well enough to go home. A short time later, all my hard work seemed for not when, during my discharge, the doctor uttered two unimaginable words: “6 weeks.” I could play baseball again in 6 agonizingly long weeks. To my young mind, the season and therefore my life, was over.
As a kid, summer vacation seemed to last forever. It was when I lived life. No school, no homework, no worries. Just having fun and enjoying life. Throwing and hitting a baseball, chasing and catching butterflies, wading in a river and catching fish. Just three months, each summer created a life time; those 6 weeks I could not play baseball, an eternity.
Time is funny that way. We have standard units to measure it: seconds, minutes, hours, days, weeks, months, and years. Yet, depending upon where we are in our life, time and the units we use to measure it, take on entirely different dimensions. As a kid, 6 weeks seemed an eternity; as an adult, not so much.
On January 29th, 2014, a doctor again told me those two words: six weeks. At that moment and stage in my life, that very same measurement of time affected me in an entirely different way than it did when I was a kid to whom the most important thing in life was playing baseball.
With cancer, I am constantly using different measurements of time to judge where I am and how I am doing at any given point. Though really, I am doing nothing different than what we all do every day when we think things such as, “I have to be out the door in 15 minutes,”or “this project is due in a week,” or “I have 20 weeks to train for my marathon. It is that with cancer, the same measurements of time take on different dimensions
Nearly 10 years ago when I was first diagnosed, my life expectancy was thought to be around 3 to 5 more years. Significantly longer than the 6 weeks I had to go without playing baseball in 4th grade, but at the moment I heard it, it seemed a whole lot shorter. And the same measurement of a 3 to 5 years to live, so devastating to hear when I was diagnosed in 2004 would be welcome news today.
Almost 18 months ago, in November of 2012, we learned my cancer was growing and progressed to a new stage. We know now that is is a stage IV GBM. Over 50% of the people diagnosed with a GBM die within the first year. Only 20% make it past two. It probably has the worst overall 5 year survival rate of any cancer. In the last year and a half I have endured six weeks of daily chemotherapy and radiation, 4 additional monthly cycles of chemotherapy, two hospitalizations, brain surgery, months of steroids, more radiation (this time stereotactic surgery), and biweekly Avastin infusions for the last six months. My blood counts–white, red, hematocrit, and platelets–plummeted and slowly crept back up to almost normal again. For months I was unable to sleep at night, then for months I was unable to stay awake. I watched helplessly as my body transformed from a sinewy athletic build to a bloated and swollen blob. My weight fluctuated over 30 pounds and I lost half of the hair on my head . . . twice. I went from running a 3:03 marathon to struggling to walk a couple blocks as my left foot dragged with every step, as if tethered by a ball and chain. All of which brings me to January 29, 2014, and those two words, that measurement of time: “6 weeks.”
I completed my second course of radiation in December while undergoing biweekly Avastin infustions. I was physically and mentally spent. I felt nothing like the man who started this odessey in 2004 nor remotely like the man in November 2012, who I had worked so hard to become. In speaking with the oncologist after I completed radiation, her thought was to start me on a different course of multiple chemotherapy agents in conjunction with the Avastin. I explained to her that at my next appointment, when we did my first post-radiation MRI, I wanted, for the first time, to have a discussion about the quality versus longevity of my life. I told her I wasn’t giving up, but I was tired. It had been a long and difficult road. And I wasn’t sure I was willing to endure more and increased misery only to buy myself a couple of months in the end. We scheduled my next appointment and MRI for January 29th.
In the meantime, Linda and I hastily scheduled a desperately needed trip to Maui. While there we relaxed, enjoyed the sun, spent time with friends, and relished our time together. I gathered strength and regained use of my left foot and hand. I spent a lot of time contemplating the quality versus longevity of life. It is not an easy decision. It is not an easy disease. It is cruel. There is no cure. What it does and will do to me is the easy part. The impact to those around me is nearly unbearable.
Getting an MRI with a GBM reminds me of the movie “The Deer Hunter” where prisoners of war are forced to play Russian roulette. You never know if there is a round in the chamber and you never know how long you will be in the game. On January 29th, I pulled the trigger resulting in nothing but the click of an empty chamber. The MRI revealed no new or at least significant tumor growth. The heavy discussion of quality of life versus longevity was delayed. When Linda and I met with the oncologist, all three of us decided to simply stay the course for a while. No additional chemo. Just the bi-weekly Avastin infusions. I was granted a reprieve of sorts, for “six weeks,” at which point I would get a new MRI.
Six glorious weeks.
It has been more than two months since that appointment. The latest MRI again revealed no new tumor growth. I have been running a little and riding a little every day. Nothing much or too fast. Nowhere close to racing a marathon or competing in an Ironman, but I have come a long way from not being able to type with both hands or walk much.
Considering that nearly 80% of the people in my shoes would not be alive today, let alone lacing up a pair of running shoes for a 14 mile run, make no mistake, I have nothing but the deepest gratitude and the most profound appreciation for the opportunity I have every minute of every day.
In fourth grade “6 weeks” were the worst words I could imagine. On January 29th, I couldn’t imagine hearing anything better. Two weeks ago, after reviewing the incredibly surprising results of my most recent MRI, my oncologist said to us that she was willing to wait 12 weeks this time before another scan. Without hesitation, Linda and I simultaneously replied, “no, ‘six weeks’ is fine.”
That was 3 weeks ago. As I told my friends and family back then, it was incredibly good news but by no means am I out of the woods. The fact remains I have highly aggressive and incurable brain cancer; yet, a more important fact remains: I am still alive.
And while I am, as long as I possibly can, I will continue to lace up my running shoes to enjoy early morning runs with my wife and friends; clip my cycling shoes into my pedals to climb a mountain or two on my bike; and jump in the pool whenever I can to do a few laps, pretending I know how to swim. Every step of the way, appreciating how lucky I am.
Even if I am living “six weeks” at a time.
And who knows, maybe, just maybe, I will be able to get in a race sometime.
I know I will die.
This disease will kill me. Nothing wrong with that. I accept it. We all die at some point. But for now I am still alive.
The news that I have a grade IV GBM growing in my brain hit me like a truck speeding down the highway. It knocked me down, beat me up, and took my breath away. After getting the news, I never really let myself emotionally release. I never broke down, never cried about it. I sure felt like it a number of times over the last couple of weeks. It is not that I am a tough guy impervious to pain or devoid of emotion. I just don’t think I ever caught my breath enough to take it all in and allow myself to feel the incredible sadness and despair that surrounded me like a deep fog.
The news hit Linda just as hard or harder. The fog seeped into and filled our home. We both have seen the faces and looked into the eyes of those touched by this disease. We wanted to believe, and because I had done so well for so long, almost started to believe, I was untouchable. But deep inside we knew I was not. Despite what we knew, we were unprepared for it to reach out and touch me. I am sure anyone who looked into our eyes during those first couple of weeks saw the same deep stare back of helpless despair that we had seen in the eyes of others so many times before.
The fact is Glioblastoma multiforme IV is probably the most aggressive, deadly, and least treatable cancer in existence. That it is now growing inside of my head affects me more deeply than any thing else has in my life to this point.
There is no denying the incredibly grim statistical reality of the disease. Approximately 50% of those diagnosed with a GBM die within a year. Only about 20% survive 2 years. The five year survival rate is less than 5%. And it goes down from there.
A number of factors can influence those percentages such as the person’s age, location of the tumor, and an individual’s responsiveness to a particular treatment. Some treatments, such as the Avastin that I am currently taking are thought to extend the quality of life for a couple of months, but not necessarily overall length of survival. Essentially, no matter how you cut it, those overall survival percentages remain.
It is not clear to me when my cancer became a GBM. It could be that my cancer progressed to that stage as early as November of 2012. There is no question that it progressed to that stage as of August 2013. It doesn’t really matter. Either way, I am quickly moving within the expected statistical survival parameters.
All that said, the statistical reality is not my reality. I don’t know what my reality is or will be.
Long term GBM survivors are loosely categorized as living 3 years or longer after diagnosis. Not a long time to be sure, but twice as long as the statistical average. I have read stories by those who have lived as long as 12, 14, and even 18 years, and are still living. Their lives have not always been easy. Almost all have endured multiple surgeries. Most are perpetually in some form of treatment. A few go a couple of years without either. All, regardless of the number of surgeries or the frequency and type of treatment are thrilled to be alive.
The answer to the question of “how do I get myself into that group?” remains elusive to all including the best medical professionals in the world. I don’t know the answer. Like everyone else touched by this horrible disease, I wish I did. I do know there are certain things I can control and others I cannot. Mostly, I can control my attitude and mental outlook.
As I read the stories of long term GBM survivors, it occurs to me a there is a consistent theme among them. Long term survivors all seem to possess the attitude that they will continue to live life. It is the attitude I developed after being diagnosed with brain cancer in 2004 and it is the attitude I need to firmly reestablish today.
Although nowhere near as grim, my diagnosis in 2004 was nevertheless devastating at the time. It took me a while to come to terms with it, but I did. And when I did, I refused to accept the statistics in the sense that for the most part I kept on living life as I had before the diagnosis. Absolutely I made adjustments to my long term thinking. I could not ignore reality. To do so would have been unfair to myself and those close to me. But I did not stop living life. Instead, I pushed with all of my might in the other direction and did my best to live life to the fullest. I developed a personal mantra of sorts, “Dream big, set the bar high, and feel alive.” I repeated the mantra to myself over and over again, day after day. I lived it. It became part of me. I refused to allow brain cancer to keep me down. It would not define who or what I was. I did.
I am not one of those people who will tell you that getting cancer “was one of the best things to happen to me.” It wasn’t. It sucks. But is is an incredibly humbling experience that led me to considerable introspection and caused me to make many positive changes in my life. Without a doubt, the years since my initial diagnosis in 2004 have been the best of of my life. Not because of cancer, but despite it. And because of the changes I have made within myself as a result.
It was during these years that I began to understand I was not alone in this world. For much of my life I lived with a sense of isolation. I kept a certain emotional distance between myself and others. I suppose it was a protective mechanism I developed out of necessity as a result of circumstances that previously existed in my life. My cancer enabled me to better see the capacity for good in others. I learned to accept the help and incredible kindness offered by those around me. I realized that in many ways I was giving back by receiving. I learned to trust people. Most importantly, I learned that people truly cared about me and that I had an impact upon them.
Brain cancer forced me to take control of my life. A cancerous tumor growing inside of your head reminding you everyday of your mortality can have that effect. It taught me to look for the positive in everything and everywhere. Where others see obstacles I look for opportunity, rather than accepting excuses for failure, I search for reasons to overcome and succeed. It is not that I am better or stronger than anyone else, it is because I feel I am perpetually at a fork in a road leading to either life or death. To take the path to life, I cannot accept failure or allow negative emotion to guide me.
When diagnosed in 2004, I attacked life with a vengeance in every possible way. I relentlessly pushed my mind to work harder and my body to be stronger, faster, and fitter. I succeeded on all fronts. I embarked upon a mission to defy death, to defy the cancer. In many ways I did. I far surpassed initial life expectancy and cancer progression expectations. But that was not enough. I hung upon my office wall a personal mission statement which reads “I will not just survive I will be better than before.” And so I did.
In terms of my running, prior to my initial brain cancer diagnosis my goal was to qualify for the Boston Marathon. After I was diagnosed such a lofty goal appeared unattainable to many but not to me. I reached the goal within 2 years, and after going through brain surgery and nearly a year of intense chemotherapy and treatment. I went on to run a Boston Qualifying time in every marathon I ran thereafter. I never let up. Over time, I completed more than 30 marathons improving my time each year. At some point, running a fast marathon wasn’t dreaming big enough or setting the bar high enough in my death defying pursuit to feel alive.
Without knowing how to swim, I signed up for an Ironman triathlon–a 2.4 mile swim, 112 mile bike ride, and a marathon all within 17 hours. I finished it in just under 12 hours 45 minutes. Over the next couple of years I went on to finish 6 more Ironman triathlons and numerous shorter ones in which I often placed in or won my age group. In so many ways, personally, professionally, and athletically, I accomplished more in the 8 years after being diagnosed with brain cancer than I did in the prior two decades of my life. It was a good ride.
It has taken me a while to get up after the GBM truck knocked me down. I am not completely on my feet yet, but I am getting there. As much as I would like to continue to defy death and my cancer, I am realistic. The challenges of today are different than those in 2004. I know I must take a different approach.
I still repeat my daily mantra of “Dream big; set the bar high; and feel alive.” Each day when I walk into my office at work, I still read my personal mission statement hanging on the wall: “I will not just survive I will be better than before” and think about what I can do to carry it out on that day. As I often tell my children to ask themselves, I ask myself, “what can I do today so I will be better tomorrow than I was yesterday?”
I believe the answers today are not, nor should they be, what they were 8 years ago. Pushing my mind and body to the limit is not necessary. To do so is probably counter productive to my overall physical and mental health. Taking things down a notch is not giving up. Rather, I am redefining what it means to “feel alive.” It doesn’t have to be crossing a finish line in an endurance event faster than before or faster than someone else. Feeling alive can appear when and where I want it to. I feel it as I jog with Linda in the morning, the sun rising on the horizon, birds chirping as we pass by, our feet softly padding along. I feel it as we prepare and enjoy dinner together after work. I feel it when I am around family and friends. I feel it every time someone reaches out and does a kind act or or expresses a kind and supportive thought to me. The kindness people have shown me has made me feel more alive than all of my Ironman and marathon finishes combined.
I don’t know how much time I have left in this life. None of us really know. I will give it my all to finish this race better than the 80% of GBM patients that only make it 2 years and better than the 95% that don’t make it past 5 years. My goal is to finish better than anyone else. To be the best.
I don’t know how to reach that goal. I do know that I only reach it if I get on with living. Getting on with living means once again refusing to allow cancer to define me. It means appreciating the beauty of life all around me. It means continuing to see opportunity for success rather than obstacles or failure. It means facing life with a positive outlook and letting go of any negative emotion. I may have the meanest, badest, most aggressive cancer in existence, but I am still alive. And while I am, I plan on enjoying life.
After I was first diagnosed with brain cancer in 2004 our life was a whirlwind of activity between surgery, appointments with different doctors, chemo therapy, steroids, and just trying to figure out how to cope with what we were dealt. It took a couple of years for everything to calm down to a point where we were able to simply live what felt like a normal life. We have much of he same whirlwind of activity this time around without the luxury of a couple of years to figure things out. That is okay though. There isn’t that much to figure out at this point. For the most part the fog has left our home. Linda and I are mentally in a better place. I am feeling better physically than I did a couple of weeks ago. We will take things as they come and do our best to not worry about that which we have no control. We will continue to live our lives together as we know how.
The years since first being diagnosed in 2004 may have been best years of my life so far, but they aren’t my last. Nor will they remain my best.
Like all of those long-term GBM survivors, I am thrilled to be alive. I look forward to joining their club someday.
I am excited about getting on with living.
I had no idea.
On November 18, 2012, I published the first entry of this blog. A week earlier I learned my cancer was growing.
I decided to write about “My Life With Brain Cancer” for a number of reasons. At a basic level I wanted to chronicle my experiences for myself and others. On another level, I hoped to feel sense of catharsis through writing about it. Also a large part of me wanted to inspire others dealing with brain cancer or other difficult obstacles in life. I thought I could begin to give back to others and raise awareness of this terrible disease by writing about my experience. Given where I was at that point, what I had accomplished since being first diagnosed, and where I hoped to go, I felt almost a responsibility or obligation to reach out to others. I thought I had a pretty good handle on things. I suppose I did at the time.
When I wrote the first entry entitled “Beginnings” I had been living with brain cancer for 8 years. I had been living with brain cancer in the sense that I had been living with a cancerous tumor in my brain. But, really, I had no idea what it was like to “live” with brain cancer. I thought I did. Now, that seems foolish and naive.
Certainly, I had no idea what my life with brain cancer would become. I suppose I had an idea of what to expect if things took a turn for the worse. I talked with others worse off than me. I read about the experiences of others And to be fair to myself and those close to me, there were some tough and difficult times over the years. My initial chemotherapy treatments were difficult to say the least. Emotionally, the diagnosis of terminal brain cancer was tough. It took years for Linda and me to come to terms with it. But this, this is different. This “life with brain cancer” . . . I had no idea. I really had no idea.
Even now, a year after learning my cancer is growing again, after 6 weeks of radiation and chemotherapy, after 4 additional cycles of chemo, after brain surgery, months of steroids, learning that my cancer progressed to a stage IV GBM, and trying to wrap my mind around a 15 month life expectancy, I am only just beginning to appreciate “life with brain cancer.”
I do know a lot more today than I did in November 2012, and a whole lot more than I did in 2004 and 2005 when first diagnosed and treated. I know enough now to know I am going to learn a whole lot more whether I want to or not. There is no stopping this train I am on. It is simply a matter of how fast it is going to travel before it wrecks and how bumpy of a ride it will be.
For years I thought I was “living” with brain cancer. I was living. And I did have brain cancer. But for the longest time, the cancer did not have a significant impact upon my life. At some point, a couple of years after my initial brain surgery and chemo therapy, living with brain cancer became just living. I took Keppra, an anti-seizure medication everyday. I got an MRI of my brain every 3 months. Neither bothered me much. If I forgot to take my Keppra, I might get a little visual disturbance from a small seizure. Every week or so I would get one anyway. I always viewed them as a subtle reminder that I did have a brain tumor, because other than those infrequent mild visual seizures, I was “kicking ass and taking names.”
I rather enjoyed my MRI appointments. I slept during the actual scan and after, Linda and I would get some breakfast together before heading to the Neurosurgery Clinic to view the scan and discuss the results with the doctor. Until November 12, 2012, the results were always great. Incredibly, my tumor seemed to look better each time making the appointments incredibly positive experiences despite the fact we were looking at a cancer in my brain. Afterward, we usually stopped at Starbucks to relax and celebrate life before we each headed back to work.
I worked hard and played hard. Men half my age couldn’t keep up with me. That was my living with brain cancer for years. The cancer was alway present in the back of our minds, but we kept it there. Most people who knew me didn’t know I had brain cancer. For the most part, I refused to recognize it myself. Just a year ago, life with brain cancer was running a marathon at a 7 minute mile pace without feeling tired or finishing an Ironman triathlon in 12 hours and drinking beers while I watched the rest of the field finish for the next 5 hours. I was enjoying a smooth ride on a slow moving train. At times I let myself believe the train had stopped.
Life is different now.
Today, I walk with a limp because I can’t lift the toes on my left foot as I have lost nearly all the strength in my left calf. Apparently it is the result of some brain swelling that occurred before and from the surgery. Hopefully, I will regain most if not all of the use of my left side at some point. Because of the different body mechanics involved I actually find it easier to slowly jog than to walk. But, for other reasons, that isn’t easy either.
For the past week, on a couple of mornings I have been able to muster up the strength to do a very slow 3 mile jog with Linda. “Jog” is an overstatement. It is more of a trot usually intermixed with a shuffle. I am physically unable to do more. One of the reasons is my blood levels are shot. I am anemic, my platelets, hematocrit, and hemoglobin have plummeted. No one is sure why. There are a couple of theories but no good thoughts on how to get my blood back to normal. The bottom line for me is the low levels make me incredibly weak and tired. Most mornings, after a couple of blocks of my jog/trot/shuffle I feel like my chest is going to explode as I gasp for air. My lousy blood counts also significantly limit my treatment options. Not that I have a lot of options anyway, but when your life expectancy starts to get measured in months rather than years, additional options would be nice. More important to me at this point, I would prefer to go through those months I have left with some energy rather than feeling like I am going to pass out every time I walk up a flight of stairs.
Compounding the destruction to my body by the surgery, radiation, and chemotherapy is the steroid I have been taking since July. The first week of July the doctors placed me on Dexamethasone (also called Decadron or “Dex” for short) to reduce the swelling in my brain caused by bleeding and treatment. Dex is both an effective and evil drug. It quickly reduces brain swelling. Almost as quickly it destroyed the muscle tissue in my arms and legs. This is another reason why I am physically unable to do anything more than a walk/trot/shuffle for more than a couple of blocks. I simply lack the muscle strength to do anything more. My leg muscles have deteriorated so much that most days I can’t walk up a flight of stairs without pulling myself along grasping a bannister. Dex also caused other body changes. It made my face swell up like a ballon (a condition referred to as “moonface”), it created an accumulation of fat on my stomach, back, and neck, it causes my stomach to bloat at times and my digestive system to shut down. Sometimes I have an insatiable appetite, others I have no appetite for days. My hands and feet tingle all day like they are “asleep.”
Speaking of sleeping, it is an elusive concept while on Dex. Despite the complete exhaustion Dex causes me during the day, I am lucky to sleep more than 2 hours at a time during the night. Making matters worse, while on high dosages of Dex, in the middle of the night I frequently experience an onset of incredible pain in my knees, ankles, and elbows. Some nights the pain so intense it literally reduces me to tears, like an intense gout attack in each of the six joints. I lay in misery unable to move as my joints ache, throb and cry out at the slightest touch. Try sleeping without allowing either knee, elbow, or ankle to touch anything. It is not possible. I know. I tried without success, intense pain proving my failure.
On the mornings following these Dex attacks, after I pull myself out of bed, crippled by the pain I am unable to walk without help for an hour or two. As I grasp the wall and hobble the 50 feet down the hallway from our bedroom to our kitchen, running a marathon in a couple of minutes over 3 hours or finishing an Ironman seem a lifetime ago. It is hard to believe it was just a year ago. That was living with brain cancer then. This is living with brain cancer now. I had no idea.
I have tapered down from high doses of Dex three times now. The first time was in August when it was hoped that I could avoid surgery. The significant negative impact Dex had upon the quality of my life was part of the reason we decided to proceed with surgery. After the surgery it was necessary for me to again take a high course of Dex in order prevent post-operative swelling. Fortunately, in short order my doctors tapered me down off of the drug over a couple of weeks. I was completely off of the drug for just a few of days, feeling better than I had in several weeks when, after consulting with a hematologist, they decided to put me back on a high dose in an attempt to get my body to produce platelets. I wanted to cry. I had just started feeling somewhat “normal” again.
After a couple of weeks of no sleep, painful Dex attacks, further muscle deterioration in my arms and legs, increased “moonface” and no real improvement in my platelet level, I convinced them to taper me down again. It didn’t take much. At that point there did not seem to be a good reason to keep me on the drug. It was starting to completely destroy the quality of my life with no real benefit. When life is measured in months, the emotional toll from the weeks spent feeling they way that I have is far worse than the physical hell I simply endure. Although I desperately try to live in the moment and enjoy the ride, when I struggle to walk up a flight of stairs, or simply walk at all, I can’t help but to think “time is a wasting.”
. . .
I started writing this blog entry a week or two ago. I am not a fast writer nor do I have a lot of time to spend writing. Normally, my current daily life events are not relevant to what I am actually writing about. Consistent with the theme of this blog entry, life is different now. It threw me another curve. I thought it might be good to insert some “current events” and then continue on with where I ultimately wanted to go with this entry. I am currently writing from Neurosurgical Intensive Care Unit of University Hospital. A couple of days ago I was admitted to the the NIICU with what started out as a little indigestion and diarrhea the night before and quickly moved to vomiting, high fever, and delirium by morning.
By midmorning I was basically non-responsive. Linda called my brother to help get me to the hospital. I don’t have much memory of the day. I know that I was surrounded by medical professionals constantly who were very concerned. My temperature rose perilously close to 104, my white counts dropped dangerously low, and my red counts continued upon their downward spiral. Nothing was looking good. How or if this was related to my cancer and treatment is unknown. What I do know is it scared the hell out of me and everyone else. Everyone else because I was rapidly moving toward demise if things didn’t get under control, Me, because I don’t know how I got there. If my immune system is that weakened, I will need to be all that more careful and balanced in how I live.
After a 4 day stay in the NICU, it looks like I will be discharged tomorrow. I have been on massive IV antibiotics, white blood booster drugs, poked, prodded and stuck with multiple needles, shots in my stomach and a PICC line which is basically a blood catheter that runs from my bicep to my heart. Truthfully, none of it bothered me much. None of it except I am back on a high dose of my nemesis Dex. The hematologist feels keeping me on a high dose until mid next week will help rule out some reasons why my blood counts are remaining so low. If they continue to remain low through mid next week he has agreed to let me taper down yet again. I will undergo a bone marrow biopsy. He said it is painful. I told him given what I have been through thus far, I am not worried. Where we go after that I don’t know.
Life is different now.
I suppose the one good thing out of this brief interruption to my life is I was able to get an MRI of my brain. GBM’s can be extremely fast growing tumors. That is why they can kill you so quickly. One theory as to why I am having trouble with my blood levels relates to fast tumor growth. I haven’t had an MRI since immediately after my surgery. I have been a little worried that my cancer was starting to rapidly grow. Fortunately, the MRI showed that not to be the case. There may be an area of new growth, but it is a little early to tell yet. The bottom line is that my brain is not riddled with new tumor. My neurosurgeon is O.K. with the scan at this time. If he is, I am, though the area of enhancement concerns me.
They rushed me into the NICU on a gurney puking, delirious, and with a fever near 104. I walked out 4 days later after two blood transfusions, massive amounts of IV antibiotics and with no real explanation as to what happened or why and back on a high dose of my old friend Dex, for the 4th time, in a renewed and more urgent attempt to stimulate my bone marrow to produce blood cells.
And so goes my life living with brain cancer. As I said before, I had no idea. Back to rest of the story.
. . .
I pushed myself my entire life. “Driven” does not describe my odd behavior over the years. Maybe my DNA is just different. From a young age I thrived in adversity. I rarely took the easy path. If there was a way to challenge myself I seized it. I gravitated toward that which seemed difficult or impossible.
As a young kid I played baseball. I was pretty good at it. Better than most. Excelled at every position. I enjoyed it. Baseball came natural. My dad grew up wrestling. As fathers do, he encouraged me to wrestle. I joined a wrestling team but never became good at the sport. Built like a beanpole with the body strength to match, a natural I was not. I competed in both sports for a couple of years but my heart remained true to baseball. It did until the summer of 7th grade when I lost a wrestling match I knew I should have won. After the match, I stormed out of the gym, ran to the nearest pay phone, still dripping with sweat called my baseball coach, and told him I quit to wrestle full-time. From that point forward I never stepped on a baseball diamond again.
Despite years of working myself to death at wrestling, routinely staying for hours after practice to work on my strength and conditioning when all others were at home, living and breathing the sport for years, I never came close to the success at wrestling I obtained in baseball as a 5th grader. In fact, in the final week of my senior year of high school, I lost in a wrestle-off and did not even make the team for the final match of the season. Through all of the years of frustration, tireless work, and ultimate failure, I never once regretted the decision to take the more difficult path. I thrived on the challenge. It served not as discouragement but as intensified motivation and strength for future struggles.
Years later, after dropping out of college at CSU, I joined the Navy. The nation just a few years removed from Vietnam. Not surprisingly, my decision to enlist was not popular with the folks. I didn’t help matters that I came home from the recruiter and informed them after the fact. Despite their concern they handled it fairly well. With angst on his face, my father sought assurance from me that I joined for only 2 years. I explained it was a little longer. “Three?” he asked, to which I replied, “no not for me” which was followed by the hopeful and inevitable “four?” At which point I explained that “no, for me it was six.”
As with baseball, I did well in the Navy and could have easily turned it into a great career. I I thoroughly enjoyed the Navy. I enjoyed everything about it. I even enjoyed bootcamp. I served with pride.
As it turned out, my six years became eight so that I could put myself through college at night while I ran a department during the day. For four years I worked more than 60 hours a week, took 9 credit hours a semester, including the summers, at American University in D.C., and spent 3 hours a day commuting back and forth, all with the ultimate goal of gaining entrance into law school. The easy path was to remain enrolled at CSU and move on to law school after graduation or to stay in the Navy and enjoy a successful career.
Managing a department while muscling my way through school were difficult sleep deprived years. I often was so tired by Friday night that my bones literally ached. Simple pleasures such as watching a movie or a enjoying a football game with a beer were virtually non-existant. To this day, I do not know how I survived.
My earlier life experiences served me well. I graduated with honors from American and then put myself through law school as I raised two kids, worked nearly full-time, and again graduated with honors. Those years even more sleep deprived than before. And as before, I never once regretted the decision to take the difficult road. I felt good about it. Something about facing adversity sits well with me. Maybe I was made for it.
This past week I have worked with my doctors to put together a treatment plan for the next month or so. Just prior to my hospitalization I began treatment with Avastan. The treatment is relatively simple. A weekly IV infusion every other week that takes about 30 minutes. Avastin blocks tumor blood vessel growth to create hypoxia (oxygen deprivation) in the tumor and shrinking it. It has shown mixed results. In some it has been effective to a degree. In others, the tumor finds new pathways and comes back with a vengeance. My Avastin treatment has been slightly delayed in order to get my blood levels stabilized at a level high enough for me to safely tolerate the drug. To accomplish this, next week I start weekly infusions of another drug called Rituxan. These infusions take longer. In the neighborhood of 4 – 8 hours. In the meantime, I will continue to take Dex, in stark contrast to the gaunt sinewy athlete I was but a short time ago, my body swollen like a balloon, unable to tie my shoes or fit into my suits, I will slowly walk a few blocks each day during lunch to maintain a sense of balance in my life and get in what little exercise I can manage.
While I wish I did not have to go through them, the infusions don’t concern me greatly. The tenuous nature of my life does. This is nothing like one of those difficult roads in life I took on willingly as a challenge. This is not an adversity I relish. I want nothing more at this very moment than to wake up from this horrible nightmare, find myself on the easy path, sit back, relax and enjoy life. It is not to be so.
This “living” with brain cancer . . . I had no idea. And even if I did, it would not make any difference. My hope is that all my past life experiences in never taking the easy road will again serve me well and help me navigate the most difficult journey I have faced.
Life is different now.
In Vegas, the current line on the over/under for Broncos this season is 11.5 games. Optimists among us will take the “over” and hope that Peyton Manning guides the boys in orange to at least 12 wins.
Now that my cancer is a GBM, the current line on my over/under is about 15 months. My line is not set by Vegas. My line is set by the entire universe of people with a GBM. In the world in which I now live, people live on average 12 – 18 months. There is nothing magic about that number. It is just a number. It is a number that certainly puts things into perspective, but it is still just a number. It is a number that represents a dividing line. There are as many people over the line as there are under the line. And how far over or under the line people end up living can vary greatly.
Eight years ago when I was first diagnosed with brain cancer, Linda and I attended a monthly a brain tumor support group. At the time, both of us were terrified with what we thought was my over/under back then–3 to 5 years. It was in the support group where we quickly began to realize how fortunate we really were. Those patients with less aggressive tumors like I had at the time were in a completely different world than those with GBMs. What I was experiencing at the time was scary. What I saw in and heard from the GBM patients was terrifying. Our time with the tumor support group lasted only a couple of months. We found it useful at first, but the experiences of those other patients and caregivers were so different from what we were going through at the time that the group became more depressing than helpful. What I did gain, was an incredible appreciation for how fortunate I was and how precious each and every day can be. I learned how important it was to be able to focus on and live in the moment. It is easier said than done, but when you are faced with 3 – 5 years or 15 months, it becomes more of a necessity, a survival technique really, than some sort of abstract concept.
Shortly after joining the support group, a gentleman who attended regularly lost his battle with brain cancer. It was very sobering. Like me, he had been originally diagnosed with a grade II oligodendroglioma. Like me, at the time of diagnosis he was very active. I learned after his death that he was an avid cyclist before his cancer. When I met him, his tumor had already progressed to a GBM and very quickly took his life. Unfortunately, he was one who finished well under the line.
On January 25, 1998, the Denver Broncos lined up in Super Bowl XXXII against the Green Bay Packers. Denver had lost 4 previous Super Bowls and the AFC was on a 13 game Super Bowl losing streak. Green Bay was coming off a Super Bowl win over the New England Patriots and were poised to be repeat champions. Denver entered the game an 11 point underdog–one of the 5 biggest underdogs in Superbowl History. The line set by the odds makers in Vegas represented the thoughts of the country and world. No one gave Denver much of a chance. But John Elway, who had lost three previous Super Bowls, had other ideas.
With only 3:27 left in the game, the score tied at 24, Elway raced to the 10 yard line, then the 8, then the 7. He refused to slide or go out of bounds. He knows his 37 year old body is going to take a hit but he doesn’t care. This isn’t the time to take the easy way out. This is the time to win. Two Packer defenders unloaded viscious hits on Elway spinning him around like a helicopter. He landed on the 4 yard line for a first down Broncos. Without missing a beat, he then jumps up as if the hits and resulting helicopter spin made him 10 years younger, runs back to the huddle, with his arm raised in the air and his fist clinched. At that moment, anyone anywhere watching the game knew the “line” didn’t matter; the man did. Denver went on to win the game 31-24, well surpassing the 11 points they were supposed to lose by in line set by the Vegas odds makers.
The line was just a number. What mattered, was the person.
Eight years ago, when attending the brain tumor support group, I was fortunate enough to meet a man who was living with a GBM. We shared some pizza together and talked about life with brain cancer. It appeared to me that his tumor was affecting him in some ways, but overall he was good. He spoke slowly but coherently and with great intelligence. He told me he had been a mechanical engineer by profession when he was diagnosed. He was was not spry man and moved slowly and with what appeared to me some deliberation rather than walking naturally without thought. He was in his early 60′s and was a fairly large man. I never learned whether those characteristics where a result of what the GBM and treatment had done to his mind and body or if that was just the way he was and had always been. What I did learn from him that night was far more important, particularly now.
We talked about what it was like to get a devastating diagnosis of brain cancer and to learn that there is no cure, extremely limited life expectancy, and that the treatment can often be worse than the disease. Back then, the “line” on a GBM was worse than it is today. Treatment options were more limited. In essence a GBM diagnosis was a death sentence within a year. He explained to me how he did what many of us say we would do upon receiving a blow like a GBM diagnosis. He quit his job, he maxed out his credit cards, bought a new car, and travelled to exotic locations. He did everything and anything he could do to maximize his extremely limited time left on this earth. His advice to me, however, was to not go forth with wild and reckless abandon. Indeed, although he had an amazing time, his spending spree was his biggest regret. Within 6 months he was broke, unemployed, and in massive debt. And he was still alive. Despite the “line” he kept right on living. The night we shared pizza and conversation together was more than 12 years after his GBM diagnosis. He wasn’t complaining by any means. Although those initial 6 months caused him years of financial struggle, he was thrilled to still be alive. He simply wanted me to understand that life expectancy is just a number. And that I, like he, could be one of those who end up above the line. I quit attending the support group about six months latter. He was still going strong.
Two years ago I competed in Ironman Lake Placid. I took my dad with me. We had a lot of fun and both really enjoyed the trip. Ironman Lake Placid is a amazing event held at the same venue of the 1932 and 1980 Winter Olympics. It is where the United States won the “Miracle on Ice.” and the 1980 Olympic Gold Medal in ice hockey.
For me, the trip with my father two years ago took on unexpected significance. The town appeared to look much the same as it did in 1980. Being in that historic Olympic town for an the Ironman, with all of the excitement and energy the event brings with it, was electrifying. I found simply walking around Lake Placid to be an extremely emotional and moving experience.
It spoke to me in the same way that Ellway helicoptering for the first down did. The sights and sounds of that famous Olympic city during Ironman weekend strengthened my deeply held belief that no matter the odds, adversity can be overcome. You may not be successful in every given situation, but you have to give it your best shot. To do anything less is to accept failure.
In the race, I gave it my best shot. Despite throwing up a couple of times on the run from dehydration and pure exhaustion, running in front of an oncoming bike and causing an accident, and feeling like I just needed to quit on multiple occasions, I kept going. I didn’t do as well as I wanted, but I gave it my best. And my best on that day was good enough for a new personal best.
On February 22, 1980, the “Miracle on Ice” took place during the medal-round men’s ice game between the United States and Soviet Union. In what is widely regarded as one of the greatest and dramatic upsets in sports history, the U.S. team, made up of amateur and collegiate players and led by coach Herb Brooks defeated the Soviet team 4- 3, which was considered the best hockey team in the world,
The Soviet team had captured the previous four Olympic hockey golds, going back to 1964, and had not lost an Olympic hockey game since 1968. Three days before the Lake Placid Games began, the Soviets routed the U.S. team 10-3 in an exhibition game at Madison Square Garden in New York City.
Few gave the young Americans a chance to win. But win they did. I was a senior in high school at the time. I still have vivid memories of watching the game and hearing Al Michaels unforgetable call–”Do you believe in miracles?–YES!” as time expired. It was around that time in my life that I started to develop a strong unshakeable belief that nothing in life was impossible. When faced with seemingly insurmountable odds, I have always tried to stare impossible in the eye and not be the one to look away or blink.
So what do you do when you learn that you are faced with a line of basically 15 months? Frankly, I don’t know. It is an incredibly short time. At this point it is simply incomprehensible for me. I can’t wrap my mind around it. I have no way of knowing whether it could actually turn out to be 6 years or 6 months or what the treatment and disease will do along the way. I am somewhat paralyzed and thus just keep doing what I have done to this point–move forward and live life the same way I have been.
In a sense, life hasn’t changed at all nor is it any different for me than it is for anyone else. Despite what we may want to believe and what makes us comfortable, there is no certainty in life or death. I suppose, in a way, I am lucky. I know the line on my over under/under. People die every day without warning. It is almost as if when you get a diagnosis like this, you have more certainty. It is not information that you necessarily want or are prepared to deal with, but it is there and you have the opportunity to make decisions based upon it.
Never in my life have I faced the odds that I face today. I am afraid. But I move forward knowing that people overcome adversity everyday. Odds can and will be beat. There is absolutely no reason why I can’t end up over the line. From all that I experienced in life, I know this to be true. I also know I will give it my best shot. If all goes well, maybe, 12 years from now I will be sharing a pizza with someone like me, telling him that life expectancy is only a number, and how in the end, the number really means nothing. But the person–the person means everything.
The acronym I never wanted to hear to describe my cancer. Now it does.
Look it up. Scary stuff. Seriously, look it up. This new road scares the hell out of me. It would scare anyone. I have feared this day for over eight years. I hoped it would never come. Convinced myself it never would. Now it has.
GBM is a Glioblastoma Multiforme Stage IV tumor. It is the most highly aggressive, invasive, and deadly form of brain cancer. It is what my cancer now is.
It was quite a week.The game has changed.
My surgery took place on Monday the 19th. It was a long day. I arrived at the hospital at 5:00 a.m. for my pre-op MRI. I felt remarkably calm and upbeat. The first step was to have electronic markers placed on my head to assist the surgical team guide the tools used to resect my brain tissue. Next was the MRI to map my brain in relation to the markers. Then off to pre-op to get ready for surgery. All around a pretty easy and orderly process.
Originally, surgery was to take place in the morning, but, I have been having a problem with my platelet level. For reasons yet to be determined, my platelet level continues to drop fairly low. It could be a result of what the chemo is doing to my body, could be something else. It is something we will have to figure out. The morning of surgery, my platelets were lower still. Consequently, I spent a good part of the day getting platelet transfusions to raise my level high enough to safely conduct the surgery. Ultimately, they were able to raise it and I was in the O.R. sometime around 5:00 p.m.
The surgery was more aggressive than I had original thought it would be. My surgeon wanted to go after the “enhanced” areas on the MRI. His concern was that my MRI showed two different areas of enhancement which may be active tumor. You really can’t tell from the MRI whether those enhanced areas are active tumor or an enhancement from some sort of treatment effect or other cause. At this point though, if you are going in, it is probably best to get out what ever tissue you safely can that may be active tumor growth. The risk, and my biggest fear about the surgery was that I could suffer permanent vision loss to my left side. In theory, if that were to occur, my brain could compensate over time so that I could read and write and do other similar activities. But I want to be able to ride a bike and run–activities that require quick reflexes and good vision if you are going to do them safely. The areas of enhancement were perilously close to areas of my brain, if damaged, could cause the type of loss I feared.
The surgery took about 4 hours. A remarkably easy process for me. Just prior to wheeling me into the O.R. they administered some meds that basically knocked me out for the duration. One moment I was in a bed in pre-op and the next I was coming to in the recovery room. As I started to regain consciousness, two things raised complete joy within me–I could see and my head felt better than it had it weeks. Not only did I not suffer any vision loss, gone was the hazy peripheral vision that had started to develop over the last couple of weeks. I truly felt great. I was elated. I remember at one point with my surgeon and brother in the room, I was so relieved with how I felt, I blurted out “lets go for a run!”
The surgery was a tremendous success. My surgical team incredible. I truly do not possess the words to adequately describe the professionalism and compassion they showed for me and my family that day and throughout this entire process. I marvel at the skill and teamwork it must require to navigate surgical instrumentation through a brain tp remove tumor from healthy tissues with millimeters of precision. Modern medicine and technology are amazing. But really, what makes the difference are the people involved. There are none better than those involved with my care.
I spent the two days immediately after surgery in the Neurosurgical ICU and then a couple more on the general Neurosurgical floor. I slept a lot. My body and brain slowly yet quickly recovered. The human body is amazing. Within forty eight hours of having a chunk of my brain removed, I’m walking a half a mile on a treadmill, albeit unsteadily, to regain coordination and doing logic games to regain mentally agility.
For the next couple of days, although I felt pretty lucid most of the time, there were certainly times where I had difficulty thinking. I seemed to go through periods of energy and what I can best describe as exhilaration. I also traveled through periods of extreme fatigue and weakness. All part of the recovery process. As I now think back about the week, I realize there is a lot that I don’t remember and that blurs together. I also realize that I was a lot worse off mentally and physically in the weeks leading up to the surgery than I was aware of at the time.
By Thursday I was sufficiently recovered from the surgery to go home. One of the objectives of the the surgery was to get the pathology of those area’s of enhancement on the MRI. Were they related to treatment effect or active tumor? And if active tumor, what were the grade and type? It has been over 8 years since my original diagnosis and biopsy. What are we dealing with today?
My surgeon came to me in my room as I was getting ready to leave. He looked me in the eye and gave it to me straight–”the pathology came back, it’s grade IV . . . GBM.” There was nothing more to say. I admire and respect his directness. I would have it no other way. With those words though, recovering from brain surgery became the least of my concerns.
From the beginning I knew the likely progression of my cancer. I started with a grade II oligodendroglioma. A relatively rare and slow growing tumor. I may have had it for years before I was diagnosed in 2004. There is no way to really know. Over time, brain tumors typically increase in grade and severity until they develop into grade IV. It is how they kill you. It is what they do. My hope was to delay that progression from grade II to grade IV for as long as possible and to live life to the fullest along the way. I feel pretty good about what I have accomplished so far. Remarkable really.
Since being initially diagnosed in 2004 I have tried to live life to the fullest. To stay positive and upbeat. To encourage all of those around me to do the same. It hasn’t always been easy, but all-in-all it has been a good ride. There is a line from “The New Karate Kid” that resonates within my core–”Life will knock you down, but it is up to you whether you stand back up or not.”
Back in November when this journey began again, I was encouraged by a recent study involving oligodendrogliomas in individuals with my genetics. Those being treated with the temodar and radiation had greatly improved life expectancy and increased periods of disease free progression. In other words, they were living longer, much longer, and they were living longer without new tumor growth or additional treatment. This study was the most encouraging news I had received since I was diagnosed in 2004.
The game changed for me last week. At this point, I am still trying to absorb and process it. Physically, I have been spending this week trying to recover from the surgery and taper down off of the heavy steroids I was on before and after the surgery. My doctors warned me that I would be exhausted for a couple of weeks as I work through this process. I am. My body decimated, I unsteadily walk our greyhound Buddy 3 miles each morning to clear my head, and begin to rebuild my strength. By late afternoon/early evening I sit quietly at my desk at work or on the couch at home, expending as little physical energy as possible, willing my body and brain to rebuild and regenerate. I find it necessary for the recovery process to consistently take in healthy calories throughout the day. My years of marathon and Ironman training have provided me with invaluable insight as to how to best approach this physical recovery process.
Mentally, I am struggling to just put everything into perspective. This time a year ago, I felt on top of the world. Sure, I had brain cancer, but it had become almost an afterthought in my day-to-day existence. Life had never been better. I was turning 50 in a week, had just completed my 7th and fastest Ironman and in the best shape in my life. Linda and I were starting to think more in the long term such as how and when we could pay off our house, retirement, travel–things that we really didn’t think possible just a few years ago.
The game has changed. Everything is so unsettled right now. Time seems suddenly compressed and accelerated. Maybe it is. Maybe it isn’t. We just don’t know.
Initially, I remained calm upon learning of new the pathology. I let it slowly soak in. At the time, I was packed and ready to leave the hospital but still in my room. I sat down, called Linda to tell her that it was time for her to come out and take me home. Although I did not say anything, she could hear it in my voice and asked what was wrong. It was then that the first waive of emotion hit me. It hit me with such force that I could not speak. I could not get the words out of my mouth. When I did, my body and mind went numb.
We have been riding a roller coaster of emotion since. Over the past week, swings of disbelief, anger, overwhelming sadness, and helplessness have given way to acceptance and renewed resolve. Resolve to fight the fight wherever and whenever my cancer next raises its head. I know now that it will always be there ready to strike. I just need to be better, stronger, tougher, and faster than it is.
In the end analysis, it doesn’t really matter–grade II oligodendroglioma or glioblastoma mulitforme stage IV is not a choice I get to make. Life knocked me down with this new diagnosis. My choice is whether to stand back up or not.
Really though, there is no choice. It is time to stand.
Life keeps moving. Just not always in the direction or the way in which I want.
I fight this cancer in the way that I know how. I fight it with all the strength I have. It is exhausting at times. With no end in sight, it can be overwhelming and consuming. Sometimes I need a good reminder to take a step back and simply enjoy the ride.
The entire weekend of the Colorado Colfax Marathon was a good ride. Family and friends out in support running the 5K on Saturday. A stream of blue “inVinceable” shirts along marathon course on Sunday. It was one of the most humbling and inspirational experiences I have have been through. I will forever owe a debt of gratitude to each and every one of you who were out there with me in body and spirit that weekend. Thank you.
The race was exhilarating. I probably pushed things harder than I should have. Post race festivities at the house were wonderful. The day could not have gone better. I went to bed that night, feeling good, but knowing I would start my next round of chemo and regiment of drugs the following day. It is all part of the game. Build me up; break me down. Never give up. And hopefully take out some of the cancer in the process. It is how I fight. It is how I roll.
My post marathon chemo cycle turned out to be a somewhat of a rough round. Snuck up on me really. I didn’t slow things down much after the race. Truth is, I started to pick up the pace. Started to increase my intensity. Started to believe those shirts that I was “inVinceable.” Started to believe there were ways I could get my body stronger and faster while I was consuming a cocktail of drugs destroying my body. I rested, I ate well, and thought I maintained balance, but through it all I slowly started to push more and more.
Deep inside I just wanted my life back. I have been fighting this incurable disease for too long. Eight years ago I underwent 7 months of chemo and I was done. I was able to live again. This time, after 7 months of chemo and radiation I wasn’t even halfway through. In retrospect, I realize I was starting to get angry. I was growing inpatient. My mindset was to push harder, to not let up for a moment. I wasn’t going to let this defeat me. I didn’t take time off from work. I didn’t slow down. I pushed. I pushed through the cycle. I pushed to get stronger. I don’t lose. I win. I will beat this I told myself.
I ran The Colfax Marathon on May 19th. On May 20th I was on chemo for a week, drugs eating away my body and flesh, blood counts dropping, muscle falling off my body by the day. And each day I am at it fighting to get stronger. A month later, Father’s Day June 16th, my body still recovering from my last chemo cycle, I was back at it competing in the Boulder Sprint Triathlon. I figured it was “just a sprint” I would have fun and not push it too hard. Who am I trying to kid? Despite my weakened state, I still fared well in my Age Group. After the race in the beer tent, I joked “Triathlon by morning; chemo by night. And that is exactly what I did. I began my next chemo cycle that night. Not surprisingly, this cycle was a little harder than the last one. What was it that I said before . . . “snuck up on me really.”
A week later, three days off of chemo, with my brother and some friends, I rode my bike pretty hard from Evergreen, up Squaw Pass, around and up Floyd Hill and back to Evergreen. Some pretty good climbing and we rode it at a pretty good clip. I had a lot of fun. Beautiful views and great company. I enjoyed the feeling of struggle as my mind and body pushed me up the climbs and feeling of free falling exhilaration as I hugged the road at 40 mph plus down the descents with the wind whipping around . In a word, I enjoyed feeling “alive” again. Throughout the ride though, I could not shake this nagging notion that the strength was gone throughout most of my body. Not gone in the sense that I was coming off of chemo and other drugs as I have grown accustomed to feeling over the months. Gone in the sense that I was unable to get my muscle tissue to “fire” correctly. My muscular strength was just gone. More concerning (and embarrassing), once back at the car after the ride, still in my bike kit, I lost control of my bladder. I simply could not stop my bladder from emptying. It wasn’t the first time in the past week either. At least this time I was out-of-doors in bike clothes rather than in my business suit pulling into my driveway.
I started noticing other things as well. So did others.
Over the course of the next two weeks, an incredibly deep fatigue set in throughout my body. I have never felt so physically tired or spent. The fatigue wouldn’t lift. Each day it drove deeper within my body. On separate occasions by brother and wife commented that when I was running I held my left arm still and at an odd angle. I noticed that I was starting to drag my left heal when walking. I attributed these things to the fatigue. I found it increasingly difficult to concentrate and stay awake at work. My fingers weren’t hitting the keyboard just right. Simple tasks were not so simple anymore. As the days passed, walking became a purposeful deliberative act rather than a natural unconscious one. I started to feel enveloped by a mental fog. My anger over this long course of treatment dissolved into depression and sense of hopelessness. The ride wasn’t so fun anymore.
My treatment has a cumulative effect in that each chemo cycle is progressively harder on my body. Each month, while on the drugs my body weakens and withers away. It is a two step backward one step forward process. I am always losing ground. By the beginning of July, I had completed 4 cycles. Probably lost more steps than I wanted to accept or acknowledge. Add to the mix the intensive radiation and chemo I underwent for 6 weeks beginning in December, my desperate desire to push and fight, a perfect storm was beginning to develop within my brain.
Radiation is a tough friend. Like the chemo, it kills cancer cells–and more. As one of my most treasured members of my treatment team noted, “It is one of those gifts that keeps on giving.” I may have completed radiation in January, but it wasn’t done with me.
Pushing forward, intense as ever, eager to start my 5th chemo cycle on July 14th, I met with my oncologist on July 2nd. She expected me to have an easier month. I explained how I actually felt worse and watched as the concern emerged across her face. I related to her my extreme fatigue, the feeling of weakness on my left side, and how I was beginning to feel less mentally sharp. During the exam it was clear something was amiss. Although my blood levels were high enough to begin my next cycle, I performed poorly on my neurological tests so it came as no surprise for me to hear her say that we better get an MRI within the next week or so and delay the chemo to make sure that everything was OK.
Everything wasn’t OK. My symptoms quickly grew worse. My motor skills seemed to diminish by the hour. Walking began to require intense concentration. Typing became an exercise in mental gymnastics. It was becoming impossible for me to stay awake throughout an entire day. The breaking point for Linda occurred when she realized that I was unable to make it through a day without saturating at least one pair of pants with urine. Out of love and concern my brother and Linda both reached out separately to my neurosurgical team who decided the MRI couldn’t wait a week. Within two days I was sitting in an exam room looking at some fairly concerning scans. My brain was starting to bleed and swell. I don’t recall the exact non-technical phrase that was used to describe what we were looking at on the monitor, but in essence my brain had transformed into a bloody swollen mess. No one was sure why. Just sure that something needed to be done fairly quickly. There were two options: “A” surgery to remove the blood and debris or “B”a heavy course of steroids for 2 weeks, then rescan and reevaluate.
No surprise, we decided to try option “B” first. It is my preference to have my skull cut open and portions of my brain removed only when absolutely necessary. In addition to the normal risks of brain surgery, because of the location of my tumor, any surgical intervention comes with it a risk of vision loss. If that did happen, I could probably, in time, recover and compensate enough to read, type, and adequately do other routine daily acts. Descending down a hill at 40 mph on a bike and other activities that require quick eye-hand coordination may be a different story. In other words, those things that I have come to rely upon to feel alive, to feel like I am defeating death, might be gone. That scares the hell out of me.
I have come to understand that the most important part of my treatment team is that they have come to know who I am. They know what makes me, me. This closeness that developed over the years, a friendship really, was somewhat foreign for me at first. Throughout my life I had developed an inclination to keep a distance in many situations. I have come to realize over time that that characteristic in me can be a fault, not a strength. I suppose it was born out of a fear of emotion clouding sound decision making. I have seen it and experienced it far too often in much different situations. Here though, I came to appreciate the tremendous benefit a closeness brings. It brings a sense of trust–the absence of fear. One of the most valuable lessons I have learned along this journey is to trust others. I trust these people with my life. And I know that they understand that to live I must feel alive. To do their job well they must know who I am. They do their job very well. They are the best. I am a very lucky man. If surgery became the best option, I have absolute confidence in the skills they each possess to do it in a way so as to minimize the risk. I also have absolute trust that they will only go down that road if they thought it completely necessary knowing who I am.
Although option “B” avoided surgery for the time, the prescribed steroid, Decadron, is both friend and foe. It is very effective in reducing brain swelling, but that is only part of the story. Side effects include an inability to sleep at night, (I rarely slept more than an hour at a time, or more than 4 hours a night but I certainly was able to get a lot of work done), facial swelling or what some call “moon face” (my athletically gaunt face transformed into a rounder and more swollen version of me that no one has seen for since I was 50 lbs heavier) intense acne and skin sores, emotional swings, intense appetite swings, extreme fatigue, and dramatic muscle loss (my muscular quads and calves melted into sticks with skin loosely hanging on).
The other part of option “B” was for me to agree to dial it back. The cause of the hemorrhaging and swelling was not entirely clear. It could be from new tumor growth. The MRI did show some new areas of enhancement. But it is not easy to tell exactly what is going on. The hope was that it all was result of what is called “treatment effect.” My body has clearly established that it is particularly sensitive to the chemo. It may well be that I am particularly sensitive to the radiation as well. Some patients, about 6 months after radiation start to develop what amounts to a breakdown in the surrounding brain tissue. It is a result of the combined cumulative effect of the chemo and radiation. And maybe, my unyielding nature, always pushing hard mentally and physically was also taking a toll. It was time for me to take a step back and relax and enjoy the ride. And so I did.
For the next two weeks, as Linda and I anxiously awaited the next MRI, I focused on remaining relaxed and calm. I focused on living in the moment. I gave up “training” and took up “exercising.” Morning runs became nice relaxed jogs with Linda. Swim practice became short dips in the pool simply working on my stroke. I stayed off the bike entirely. I tried to release all stress at home and work. Becoming “Zen” became my mantra. We went out for happy hour a couple of times. Watched some movies at home. Enjoyed a beer on the front porch. I really started to enjoy and appreciate life again. Despite the horrible side effects of the steroids, and the concerning MRI, life was good. I was once again enjoying the ride. I told Linda that I felt happier and more content than I had in years, maybe the happiest in my life. As the reality set in that this horrific disease remained on its singular mission to kill me, a renewed appreciation for the beauty and wonder of life filled my soul. After all, I am not dead yet. I still have a lot of living left to do.
My follow-up MRI was very encouraging. Gone were some of the areas of enhancement that might be evidence of new tumor growth. The swelling and bleeding were greatly reduced. Quite simply, it was the best news we had received since November when this ordeal began again. It appeared that the Decadron had done its job. I dodged the surgery bullet for moment. I began to taper off of the steroids. I felt better by the day. Almost by the hour. We did have to cancel a vacation, but it was OK. Linda and I had both learned to remember that even during the tough times, there is a lot in life that make it worth living. That even when life is not going in the direction or in the way you want, it is still possible, necessary really, to enjoy the ride.
It was an important lesson for us to learn. Over the course of the past 2 weeks, many of my increased symptoms have returned. An MRI last week showed renewed hemorrhaging and swelling. It is not as bad as it was a month ago, but it is now time for option “A.” No dodging the bullet this time. In a week I will undergo brain surgery. Not a pleasant thought. As I said, it scares the hell out of me. But I am thankful for the past couple of weeks and the reminder to take a step back. As I move forward, I will keep this at the forefront of my mind. I will stay calm, relaxed, and zen as much as possible. Most importantly, I will try to always remember to appreciate the beauty and wonder of life around me. No matter what direction my life will go, no matter how difficult the struggle, no matter how overwhelming the journey, I know it is important to enjoy the ride.
According to my treatment plan, this past weekend I should have been completing my third cycle of chemotherapy. My body had a different plan.
Prior to each chemo cycle it is necessary to check my blood counts to make sure my body is ready to endure another round. My original treatment plan called for 6 weeks of daily radiation combined with daily low dosage chemo, 4 weeks off to recover, then 12 monthly cycles of a higher dose of chemotherapy. The monthly cycles are 28 days consisting of 5 days on chemotherapy and 23 days off. I tend to start feeling pretty weak and sick the last couple of days taking the drugs (days 4 & 5) and increasingly worse for the next two weeks (days 6 – 19 or so). Around that time, I slowly start feeling better as my body recovers enough to start the next cycle.
My first monthly cycle of chemotherapy was delayed a couple of weeks because my body was unable to sufficiently recover from the 6 weeks of daily radiation/chemo. Eventually, my blood counts came up enough for me to start. But because my counts remained pretty low, my oncologist decided to keep me at the lower chemo dosage rather than doubling it according to normal protocol.
Despite my oncologist’s firm yet polite insistence to the contrary, I initially intended to limit my chemo cycles to six rather than twelve. She explained what I already knew, that she wanted to keep me alive as long as possible and that the protocol provided me with the greatest chance of longer “disease free progression.” She was right. Intellectually, I knew it. Emotionally and physically, I just wanted to be done with treatment and with cancer and get on with living and enjoying life. I have since resigned myself to completing the full 12 cycles. I need to keep in mind that although I have brain cancer, it does not define me. I have control over who and what I am no matter what I might be going through at any given moment. Being alive is a state of physical existence; feeling alive is a state of mind.
My body has repeatedly proven to be particularly sensitive to the chemotherapy drug. And so it was, after just two monthly cycles, I found myself sitting in my oncologist’s office being told that my blood counts were too low to start my third. I wanted to cry. As I sat there in the exam room contemplating it all, I began to accept that my 12 cycles would not be 12 months. For me, it seems 12 cycles will take much longer. I suppose it is a “good news bad news” situation. The bad news is I most likely will be on chemotherapy well into 2014. The good news is that, in theory, if my body is hyper-sensitive to the chemotherapy, then so to is my brain cancer. That’s the theory anyway. In other words, bad blood counts lead to good results. Let’s hope it is good to be bad.
Having brain cancer and going through treatment can feel at times as if life is put on hold. With the words “your cancer is growing,” life changed. In the wave of the initial shock, I thought of seemingly trivial things such as vacations needed to be cancelled and plans for the coming year had to be adjusted. As the blow of the initial shock began to wear off, it was as if cancer regained its grip upon my life and began to pull me closer to death. Instead of boarding a plane for a sunny destination we were sucked into the world of radiation and cancer treatment. Training plans were replaced by treatment plans. In short order, Linda and I knew that once again, like 8 years ago, life would not be what we thought it would be.
On a deeper and more personal level I again began to contemplate “will I live or die?” I try not to go there very often, but it is unavoidable. When I find myself there, I focus on the simple fact that we all will die. It is just a matter of when and, and more importantly, how we choose to live until the end. We may have little control over when we die; we have almost total control over how we choose to live.
Originally, upon learning my cancer was growing, my goal was to make it through treatment as quickly as possible in order to minimize the amount of time my life was placed upon hold. But I came to realize that that my life is not on hold. It is just different. Linda and I may have cancelled our trip to Hawaii and I won’t be able to compete in an Ironman next month, but life around me keeps on keeping on. I am still alive. Despite actively fighting a disease that is trying to kill me, I began to better understand that I still needed to appreciate life around me. I needed to appreciate being alive. I needed to live life.
Shortly after I learned of my new cancer growth, a friend came up with an idea she called “Run with Vince.” The idea was for people to challenge themselves by running one of the races at the Colorado Colfax Marathon on May 19th. In addition to a full marathon, there is a 5K, a 10 miler, a marathon relay, and a half marathon. She challenged people to choose a race outside of their comfort zone to emulate my belief that “you can do much more than you think you can.” What started as my friend and a couple of others challenging themselves by running one of the races spread to my family, co-workers, colleagues, friends, and friends of friends. They created a t-shirt for everyone to wear in the race. Come race day there will be around 200 “InVinceables” out there running, including my wife and oldest daughter who will be running their first marathon. My youngest will be running the 5K. A friend who lives in Hawaii made the trip out to run the marathon. Another made the trip out from California to be part of a marathon relay. People who never before toed the line at a running event are stepping up to have a go at it, pushing limits in ways they never thought possible. Even my nuerosurgeon will be running the marathon on Sunday. And all of these folks will be sporting their bright blue “InVinceable” shirt.
As race day draws nearer, I find myself more and more moved by the tremendous support growing around me. The pinnacle occurred this past Saturday morning at a little before 7:00 a.m. as I walked with my wife to meet our running group. At the starting spot, I was met by a group of 20 or more of my friends looking very similar to me–they had all arrived early and shaved their heads in what they called “Vanity for Vince.” There have been very few times in my life where I felt completely unable to express the depth of emotion I was feeling. The moment when it sunk in that all of those guys had shaved their head in support of me was indeed one of them. These are not young kids in high school or college, these are professional men in their 30′s, 40′s, 50′s and 60′s, all of whom decided it was worth it to shave their heads as a way to show support for me.
It is hard for me to describe what I feel and the impact all of this has had on me. People have told me that I inspire them. I don’t really see it that way. We all have our obstacles to overcome in life. I simply do what I need to do in order to survive. It is the people around me, all of those “InVinceables” out there who are inspiring. They have selflessly chosen to provide inspiration and support for a fellow human being. They have chosen to make a difference in the life of another.
It is against this backdrop of “Run with Vince” and “Vanity for Vince” that I contemplated what it meant for me to appreciate life and feel alive. I thought about what it meant for me to do much more than I thought I could and about making decisions on how to live. Back in December when Run with Vince was just beginning as a concept, I was deep in the throes of daily radiation and chemotherapy. At the time, doing anything more than simply watching the various races at the Colfax Marathon was unthinkable. My weight had dropped below 135 lbs and I spent most of my time at home curled up in a fetal position on the couch.
Two weeks ago, after a morning run, over a cup of coffee a couple of friends in my running group (both of whom are now both sporting nice bald heads) asked me what if any part of the race weekend I would participate in. I thought for a moment, and replied I was thinking about running the half, but now that my blood counts were too low to start chemotherapy maybe I would use it as opportunity to run the marathon. And so I will.
I might be slow, but that is OK. It is not about running a race. It is about refusing to place life on hold. It is about choosing to feel alive. It is about being inspired by and honoring all of those who have done so much in support of me. It is about celebrating life.
When I am out there on Sunday and see the flow of blue inVinceable shirts running on the course and cheering on the sidelines, I can’t imagine the flood of emotion I will feel. What I do know, is that on that day, it will be good to be bad. If my blood levels would have been good enough to begin chemotherapy this past week, I would have missed the opportunity and honor to run a marathon among a river of blue shirts and would not have experienced another one of those rare moments in life where I find myself completely unable to express the depth of my emotion.
Below is from a letter I wrote in 2008 to a friend after finishing my first Ironman and my first year of triathlon. That period of time was the beginning of my recovery from the initial diagnosis and treatment of my brain cancer. It is good to reread it now. Last night I began my monthly cycles of chemo. I know that I have a long and difficult road ahead of me. The next year will be a constant intense struggle to maintain some strength as the chemo ravishes my body and attacks the cancer. I know that the cancer will never be gone. The fight will never end until I do. I simply hope to emerge from this next year ready to become strong again. Rereading this letter reminds me that nothing is impossible, that I must believe to succeed, and that no matter how low I sink, I can always climb back higher than before.
. . . . . . . . . . . . .
I was pretty pleased all around. Just before the race, I was very nervous that I would not be able to make it. I had never before swam 2.4 miles or ridden 112 miles, let alone back-to-back followed by a marathon. My longest ride was a couple weeks before the race. I rode about 105 miles. I nearly passed out when I got home. Similarly, my longest swim was a couple of days after that ride. It was a little over two miles. When I got in the car to drive home, a couple of blocks before my house I had to pull over on the side of the highway and throw up. I pushed both of those trainings harder than I planned to do in the actual race, but still, they left me a more than a little apprehensive. One thing about Ironman Wisconsin is that it is an open water start. You have to kind of float and tread water for a while with 2000 other competitors as you wait for the cannon to go off. Safe to say, all of these things caused me to be a little nervous about even being able to finish the race right up to the opening cannon shot.
Once the swim started, I felt pretty good. A couple of funny things happened. As I took my first stroke I realized I left my wedding band on. I have lost a little weight over the last couple of years and it falls off in the water. So, I had to immediately begin clenching my fingers together on my left hand. Unfortunately, as the swim progressed, the cold water made my fingers shrink even more and my ring kept sliding off. I had to continuously use my thumb to get it back on my hand. I remember debating whether I should simply let it fall off or struggle to keep it on. Apparently this mental exercise kept me pretty distracted. After a while I started thinking I was out there for an awful long time without making a turn (the course consists of completing a 1.2 mile rectangle twice). It was about that time I heard the announcer and realized that I had in fact completed an entire loop and was half way done. How I made it around three turns without noticing I will never know.
The second loop of the swim went pretty well. I did not feel as smooth as I did during the first, but must say that I had more energy after a 2.4 mile swim than I did after swimming a lap in the pool when I first started learning to swim. My goal during the bike was to take it easy and consume a lot of food and fluids. I was pretty successful on that score. I finished the bike with plenty of energy and felt pretty fresh as I started the run. In fact, I had to try to slow myself down during the run because I was going too fast and did not want to bonk at the end. The run was amazing. The crowd support was thick and loud. It was a double loop of 13.1 miles. The half and the finish were in front of the Wisconsin State Capitol building. It was amazing running through this crowd with everyone cheering you on. It was more intense than Boston. I felf pretty good when I finished. I was a lot less tired than I anticipated. But, I didn’t push my limits throughout the entire event. My goals were to finish and to enjoy myself. I achieved both. Most of the day I had a huge smile on my face. From the moment I got out of the water I knew that at the end of the day I would be an “Ironman.” It was pretty cool coming through the shoot at the the finish line with huge cheering crowd and hearing the announcer say “Vince DiCroce. . . you are an Ironman.”
This has been a tremendous experience. The process reinforced my firmly held belief that our minds are our biggest limitation. If we believe, then we can succeed. Six months ago I could not swim a length of a pool without grabbing hold of the side gasping for air. There were times when I tried to simply float in the pool and kick that I would actually move backward. At the beginning of June, when I attempted my first open water swim experience, I was too afraid to go in the water deeper than my waist. It was a week later when I made my first real attempt at an open water swim. I signed up to do the Stroke-and-Stride in Boulder. It is a half mile swim followed by a 5K. I did it with my brother Chris, his wife, Sarah and my friend Randy. It took me 24 minutes to swim the half mile. I was so tired from the swim and had swallowed so much water that during the first half of the 5K was coughing up green junk the entire way. I could barely jog. I figured the green was from the algae in the water that I had swallowed. By the end of the run I had coughed so much my throat was raw and I was coughing up blood. But I finished. Over the course of the summer I did the Stroke-and-Stride 6 more times, did 3 other triathlons of increased distance, and improved my swim to the point that my best half mile was just over 15 minutes. We had a lot of fun laughing about my exploits after the race last weekend.
I was diagnosed with brain cancer 4 years ago November. I had just finished my second marathon. It was Chicago and I finished it in 3:34. Shortly after being diagnosed I hung a plaque on my wall that states “I will not just survive. . . I will be better than before.” During my surgery that December, I told my neurosurgeon that I would run the Boston Marathon. I don’t know if he actually believed me but it added a little leviety to the moment. The August after I was diagnosed I was “better than before” in that I ran 3:33 in the Duke City Marathon in Albuquerque. The fact that the race was for the benefit of cancer research made it a little sweeter. Although it was a new PR, I did not qualify for Boston.
I ran Duke City 3 months after my last chemo treatment. In retrospect I probably pushed things a little too quickly. My body was weakened from the chemo and consequently I began to battle a series of injuries. First, my lower back started causing me problems. So much so that by December of 2004 I could not walk upright. I began working on my core strength every day for at least 30 minutes. Although my back improved, I again probably pushed things to early and I developed stress fractures. When I ran Chicago again in 2006, the pain was so great in my right lower leg that I could barely walk after most of my training runs. I was surprised that I was able to finish the race. I refused to give up however. It was about that time that Linda bought me a bike so I could start cross-training. My injuries continued however. I began to develop a stress fracture in my other leg. Consequently, last year I was un able to run Chicago.
Since then, the tide has turned. It was September 8, 2007 that I signed up for Ironman Wisconsin. When I was diagnosed with cancer, my then boss gave me a inspirational sticker with a quote from Winston Churchill that states “never never never give up.” At the time I signed up for Wisconsin I could not run because of the stress fracture in my left leg, I did not know how to swim, and I had barely ridden the bike Linda had given me the year before. A month later, after bagging Chicago, I ran the Denver Marathon. In what set out to be a long training run turned into a new PR and a BQ of 3:30:00. In December I ran the Tuscon Marathon in 3:24, in April the Boston Marathon in 3:25, and in May the Colfax Marathon in 3:26. In June I did the Boulder Sprint triathlon, in July the Bolder Peak olympic distance triathlon, and in August the Boulder Long Course Triathlon (half Ironman distance). To complete the year I finished Ironman Wisconsin in 12:43 with a 4:02 marathon time. Throughout the year I have not just survived, I am better than before. I feel stronger mentally and physically than I have at any point in my life. My cancer continues to stay in check. When I was diagnosed I told Linda that all of my life I have tried to be the best at something. I was good at most things, but never the best. I remember thinking maybe all of those times throughout my life where I came up just short were training exercises for this fight. For this time when it matters most. With this fight I can never give up. So far I am doing well. I am starting to truly believe I can win.
Oh, and remember that moment of levity in the operating room. Well, my neurosurgeon now runs with me as part of a group on Saturdays. He ran his first half marathon last October when I qualified for Boston. This year, he is running his first full marathon in Twin Cities.
I have learned a lot about myself this year. The Ironman was an amazing experience. It taught me how to begin to truly believe. That nothing is impossible.
The best part of the day was that after 12 hours and 43 minutes, 2.4 miles of open water swimming, 112 miles on the bike, and 26.2 miles running, I crossed the finish line an Ironman, with arms raised in the air, and my wedding band still clenched firmly on my left hand.
Nearly six weeks after I completed the opening barrage of the chemotherapy/radiation and almost twelve weeks after I began treatment, my body felt like mine again. During the past week, I ran a little, biked a little, and swam a little. I started slowly at first, growing stronger each day. I ate without worry of my stomach rejecting the food or my digestive system shutting down. We went out to dinner a couple of times. I met a couple of friends for a beer. I gained some weight. We watched a couple of movies. I even enjoyed helping around the house. I had a taste of normal. It was a real treat.
The original plan called for me to start my monthly cycles of chemotherapy 2 weeks ago. My body refused to cooperate. The chemotherapy drug attacks fast growing cells. Cancer cells are fast growing. So too are the bone marrow cells that produce blood cells. My body appears to be very sensitive to the chemo. Four weeks off of the drug and my platelet and white cell counts were still too low to begin my monthly cycles. I have another blood test on Monday. Given how I feel now, I am sure I will be good to go and will be starting my first round next week. Until then, I will continue to enjoy feeling more normal.
Feeling “normal” goes beyond feeling good. There is another side. Deep in the throes of treatment I felt so miserable I could focus only on getting through the day or, at times, the hour. I didn’t spend much time thinking about what life once was, or what it might or might not be. I was in survival mode. I simply did not have the strength or the energy. Now I do.
Last March I went to southern California for a bike trip with some friends. I had never done anything like it. Each morning we enjoyed a leisurely breakfast then rode all day through the beautiful SoCal countryside. Our longest ride was a little over 100 miles and the shortest was around 40. I think I rode more than 350 miles over the couple of days I was there. After returning to the hotel each afternoon, I ran for an hour along the beach before dinner. It was great. We planned to make it an annual event. Because of my cancer and treatment, I can’t make the trip this year. . . maybe in 2014. If all goes well, I will be able to make the trip for many years to come. Feeling “normal” has caused me to think about life in this way, about how life was and what it might or might not be. It has also caused me to have renewed appreciation for what life is.
Feeling “normal” has reminded me to enjoy those ordinary things in life that over the last couple of years I started to take for granted–putting away laundry, cooking dinner, spending time with family doing nothing in particular. All things you don’t necessarily appreciate until you start thinking about what life was and what it might or might not be. Sometime after I was initially diagnosed, someone asked “what it felt like to have brain cancer?” I replied it was like driving down the highway and seeing a bus in the distance coming directly at you. You are unable to get out of its path. You cannot avoid it. It will hit you and it will kill you. You just don’t know how fast the bus is going or when the impact will occur. It is absolutely terrifying to think about. The best thing you can do is to relax enjoy the ride while it lasts. Don’t worry about the bus. You have to learn to live in the moment.
After being diagnosed with this terrible disease, it took me a while to learn how to enjoy the ride. I tried to live in the moment but could not free myself of an incredibly strong underlying fear that I was dying. It is difficult to live when you have a constant fear of dying. It wasn’t that I was afraid of death; I just wasn’t ready for it to happen. For a long time, I feared that every family event, every birthday, every vacation, and every race would be my last. I suppose that is one of the reasons why I started running a marathon every couple of months after I completed chemo back then. That and because every time I finished a marathon, I would reason to myself, “How could I be dying if I am getting faster and stronger?” I struggled with the fear for years. It is one thing to recognize the reality that at some point life will end; it is another altogether to see the bus racing toward you. It puts a whole new perspective on the notion that “we are all going to die someday.”
I’m not sure when it happened exactly, I suppose it was more of a process than an event, but at some point a couple of years back, I became very comfortable living in the moment. So good, that eventually it turned into living in denial. I succeeded in convincing myself the bus did not exist. I was enjoying the ride with no end in sight. It was very freeing. Routine things such as the concept of a future retirement progressed from something that “was” to something that “might” or even “will be.” This past November my denial evaporated like an early morning fog at sunrise. And when it did the bus emerged clearly into my vision, bringing with it the realization that while I was blissfully enjoying the ride, the bus was traveling closer to its final destination with new acceleration.
The past week or so has been good for me. I had some fun and regained some strength. More importantly, it reminded me that the bus is still there headed for me, and that while I am still here I can’t take anything for granted, not even putting away laundry or spending time with the family doing nothing in particular. This time gave me a chance to reflect and regain perspective. It reminded me to enjoy the ride and live in the moment. Death will come. It always does. But now is the time to live.
It was important to have this little taste of normal.