The Challenge Ahead

John and I recently watched a documentary film on The Barkley Marathon.  For those of you, like me, who have never heard about this race before you should try to find some time to watch it, it’s on Netflix and it’s fascinating!  This Ultra Marathon challenges participants to run over 100 miles through Frozen Head State Park near Wartburg, Tennessee.  It is comprised of a 20 plus mile course where racers are required to complete 5 loops in 60 hours or less. During the first 10 years that this race was held, no one finished and participants began to believe that no one could.  The race is like no other, the terrain is unmarked, the elevation changes are drastic, there are no aid stations along the route and there are certainly no people lining the course cheering you on.  After just one loop of this race 63% of runners do not continue and after only 2 loops, 80% usually quit.  Since 1986 only 17 people have actually finished the race.

I attribute the current state of John’s situation to that of the Barkley Marathon.  After battling so courageously through the last 7 months of surgery, radiation, and chemotherapy, and despite the success of eradicating the cancer from his sinuses, John finds himself only completing loop 1 in this very difficult race.  A race that he actually had no intention of signing up for in the first place!  

In March John’s first post treatment scans came back optimistically clear. No new cancer was detected and the “abnormal” images that did show up in his MRI were likely the result of scarring from the surgery and the high doses of radiation that John had been exposed to.  His Oncologist seemed very confident and assured us that all looked clear in this region and scheduled a new scan to be done in mid June.  In the meantime John was slowly starting to feel better, he was outside more often, was able to drive the boys to their sports and was trying to get his body back into shape by walking, and lifting weights.  However at some point in this recovery process, John pushed himself farther then he should have.  Suddenly, one morning he woke up to a pain in his upper leg.  He thought he had pulled a muscle from over doing it.  In the next few weeks he stretched and limped through the discomfort until the discomfort turned to a painful ache.  I urged John to see a physiotherapist and after only one appointment his physio asked him to get an X-ray so that she could rule out any possible bone fractures.

The results of the CT scan to John’s pelvis was not what we were expecting, in fact it was not even on our radar in the slightest and it was nothing we thought to anticipate or prepare for, but nevertheless there it was.  Six tumors have invaded John’s pelvic bone; two of them are as large as 5 and 6 cm.  We have been told the hard reality that these tumors are “inoperable” and that we will need to rely on Radiation to stop its growth and possibly shrink its size. John's original cancer, SNUC, had metastasized through his blood and is now in his pelvic bone, whether there are more tumors on other bones or organs in his body remains to be seen.  John will need to have a CT scan for his organs and we are currently awaiting the results of his bone scan. In the meantime radiation on his pelvis will begin tomorrow. 

Loop 1 of the “Barkley” began 7 months ago and was successfully completed, but loop 2 will now begin, and just like the actual race, he will be running this loop in the dark. John does not know what lies ahead, and he will have no way of seeing too far in front of him, so for now John must trust in the course and know that if he was able to complete one loop, then he certainly has the ability to complete another one.  One step at a time, one day at a time, nothing will be taken for granted and nothing will stand in his way.

Today we enjoyed a beautiful day as a family up at Grouse Mountain and tomorrow John will begin the next chapter of this Ultimate Marathon. The challenge ahead will be difficult, but John is not about to quit!

  

The Finish Line...but not quite finished!

Johns's very First Marathon - Vancouver 2010

There are a number of emotions that are attached to the finish line…there is that sense of completion, accomplishment, satisfaction, dissatisfaction, heartbreak, disappointment, elation and joy. Marathons have a way of exposing your weaknesses while also highlighting your strengths. The finish line may mark the end of the race, but for some it can also mark the beginning of a longer journey ahead. 

The last day of John’s final chemo cycle ended on Dec. 31, 2015.  It was a perfect way to say goodbye to what has turned out to be quite the challenging year. It marked the end of his treatment plan and hopefully the end of any further cancerous growths throughout his body.  Walking out of the clinic on that last day was a satisfying feeling for the moment, but the battle does continue even though John will no longer be subjected to the daily doses of radiation or chemotherapy.  More recently John was hospitalized due to a high-grade fever and very low white blood cell counts, which the body needs to help fight any possible signs of infection.  He spent 4 nights in the hospital wing of the cancer clinic where he received several litres of saline to combat his dehydration along with 4 pints of blood to increase his hemoglobin counts.  John is now battling pneumonia for the third time and is his body is still going through the wringer from what has been a very aggressive treatment plan.  But he is a true fighter in every sense of the word, and he will not let these set backs take away from the progress that he is inevitably making, regardless of how small it feels at times. It is often hard to believe that the body is capable of enduring so much punishment yet able to still come out healthier and better than ever before. If anyone can prove this to be true, it certainly will be John. The focus now is to ensure that John’s body is healing and that he is on the right path to a full recovery.  

John has run several races now and after each one he has looked ahead to the next one. He dissects aspects of his run that he can improve upon while also acknowledging what has worked.  He has researched and learned a great deal from those who have had more experience, performed better, trained effectively or had pieces of advice to share.  

In the coming months I anticipate that John will begin to build a new “training regimen” for himself, one that contributes to the success of this race that he will continue to run.  As the saying goes, John may have cancer, but cancer does not have him.

We want to thank all of you who continue to support John throughout his journey.  All of you have contributed in so many ways, particularly in lifting his spirits during some of his most difficult days! There are miles and miles yet to go when we consider what will be required for John’s recovery in the coming months. The first set of scans that will give us any indication that this has all been a success will not be until March, so although his feet may have just crossed that finished line, the race is far from being over!

The WALL

When you embark on the goal of running a marathon, the much discussed and often feared phenomenon that you train hard to avoid is “Hitting the Wall”. For any runner that has come face to face with this said “wall”, his or her experience is all somewhat different but inevitably it is the same.  Basically the body has exerted all the energy stores it has and as a result the body shuts down and must go into survival mode.  Fatigue, dehydration, muscle weakness, dizziness and mental exhaustion, are all indications that a runner may be heading directly into the wall.  In many instances this occurs when the race is nearly finished, and the runner only has a few miles left to run.  However, the wall is an unpredictable beast and getting past it requires everything you’ve got, and then some.

John has completed 33 rounds of radiation treatment, and he just finished his 3^rd cycle of chemotherapy.  There was a slight delay with his chemo treatment because John’s white blood cell count a couple of weeks ago were too low to continue.  His body has been through the ringer and with the side effects of his treatment and the various drugs and medications taking their toll, hitting that proverbial “wall” has been unavoidable.  It has been hard to watch John’s strength whither away as he fights to beat this awful disease.  The body can sometimes fail you when you need it the most, and even if it’s not happening to you, it’s a terrible thing to witness. I know John is frustrated with his body’s betrayal and it does not seem fair that his once fit and sturdy frame is now weak and fragile. However, John continues to fight; he may not be able to eat much these days and in the past week has struggled to stay upright for long periods of time, but he is fighting through it and doing his best.  Over the last month many of you have cooked us meals, baked treats, made homemade juice, soup and sauces or mailed gift cards and money, all in the effort of helping out John and our family.  We have been extremely touched and overwhelmed by this generosity and display of love and care for us.  Support is a wonderful thing; it is the brace that holds you up when you cannot stand on your own; John’s support network is large and strong!

Maintaining a positive outlook has not been easy, but John knows that the strength to keep looking ahead and moving forward is the only control he really has if he intends to get past “this wall” and finish.  John has never given up in a race, even when he has felt that “wall” closing in on him, he has kept his head up and continued to put one foot in front of the other.  In 2011 John ran in the Napa Valley Marathon, in the last few miles of the course John “hit the wall”.  It was his first experience where his body was failing him and he didn’t think he had anything left in the tank to finish the race.  He began walking hunched over trying to maintain focus when out of nowhere a stranger began to yell at him with great conviction, “Stand up!” “Keep going, you’re almost there!” “You’ve come this far!” “Keep going!” 

Yes!  We are almost there…one more round of chemo and then John can finally cross that finish line knowing that regardless of the challenges he has faced in this race, he has never given up!
                                             
                                              Goodbye to John's Radiation Mask! 

The Grind...

John at VGH Emergency for an allergic reaction to his Chemotherapy drugs :(

Even though millions of people have successfully completed a Marathon, each race is different and each racer goes through their own unique experience.  It is no easy feat to cross that finish line and it is certainly not a race for the average person. Both the training and discipline it takes to get through the race is a constant grind and there are always obstacles that must be over come along the way.

The Marathon of John’s life is a race with many obstacles.  It is like no other course he has come up against before.  As prepared as John could have possibly been for this, it has been a challenge for him to anticipate when he would eventually come across these obstacles and to what degree he would have to endure them.  His hair loss came faster then he would have liked, I shaved it all off when it started to fall out by the handful, so now John looks like a serious badass! The radiation has burned the skin of his face and scalp from the inside; as a result John has had to deal with some very painful headaches between his eyes and has extremely sensitive skin.  His mouth is riddled with sores, and his salivary glands are not very active, which makes it hard for John to not only chew and swallow food, but also to simply enjoy the flavor and taste of it.  Other crappy side effects include the skin peeling off his hands and feet, nausea, constipation and constantly feeling fatigued.  These are things he knows he cannot control and must simply learn to tolerate…the mantra, “this too will end” is ever present in his vocabulary. Yesterday John was scheduled to complete the third treatment in the second cycle of his chemotherapy plan when it took an unexpected turn for the worse.  John suddenly had an allergic reaction to the drugs about half way through the IV drip so an ambulance had to be called to bring him to Emergency.  John received epinephrine, oxygen and a steroid to help him breath and open his airway. They also took a chest x-ray that unfortunately showed he also has pneumonia to content with now too...needless to say the first half of this race has not been easy, in fact it has been a grind!

Although today essentially marks the half way point of this race, the grueling reality is that it will not get any easier…fortunately, John is no stranger to toughing it out during a race, he has hit those proverbial walls before and knows that no matter what the case may be, he is capable of getting to the other side.  There are no words to describe the uncertainty of the course John still has left to run, but as long as the finish line is in sight, I know he will eventually make it there. John has 2 cycles of chemotherapy left to go and has completed 15 of his 33 radiation blasts.  This is an up hill battle for sure; a battle John knew going in would challenge every part of his mind, his body and his spirit to keep going and to keep believing that in the end, it will all be worth it!

John gets radiation from Monday-Friday... the process takes about 15 min.  The fibreglass mask that was moulded to fit his face is used to hold John in place and is bolted to the table so that the radiation can be delivered with pin point accuracy! 

Cole supporting his dad at one of the treatments :)

The inevitable Hair Cut!...I'm a pretty good Barber if I do say so myself!

The "Aid Station"

The "Aid Station" is a very important aspect in a Marathon and in any race there are generally a number of them along the 26.2 mile course.  Some of the "aid stations" provide water, some provide food for extra fuel, and some stations are equipped with First Aid in case there are any physical issues a runner might experience throughout the course. Without these "Aid Stations" one would never be able to finish the race, it is a component that runners have come to rely on in order to finish strong and with the best possible outcome.

Yesterday John made his first pit stop at the "Aid Station" that he will rely on for the next 3 months...the BC Cancer Centre is where all the "magic" will take place and where John will receive the care he needs to beat this awful disease we call CANCER!! 

I arrived at the Centre at almost the same moment as John and his sister Margot and I took the elevator up to the chemotherapy ward with them.  As soon as we walked in John was directed to the room where he would receive his treatment....it was a sunny room with several oversized reclining chairs that seemed comfortable enough for the likes of someone as tall as John. There was already another patient in the room receiving his treatment, and an elderly woman who sat reading quietly by his side. The nurse that greeted us was upbeat and friendly and had a very positive demeanour...so far it was shaping out to be a pretty good start. The best part about "aid stations" are the people who run them...they are generally the kind of people that are there to encourage you and assist you in any way they can.  This was the kind of nurse John was fortunate enough to have.  

The 6th floor of the Cancer Centre is where John's chemotherapy takes place and it will serve as an important "aid station" for John throughout his "race".

There are 2 different drugs that John has been prescribed by his oncologist and it is suited specifically to fight the type of cancer he has. He will be receiving these chemo drugs intravenously throughout the course of his treatment...with each appointment taking just a little over an hour from beginning to end...It's amazing when you think about it...what an hour of time can do....like help save a person's life! 

Today John will return to receive his second dosage and tomorrow he will receive his third and final dosage for what will complete one cycle of his treatment. John will require 4 cycles of chemotherapy that will span over the next 12 weeks. Three weeks separates each cycle to give the drugs time to do its job, but also time for John to regain close to normal "blood levels" before beginning chemo all over again.  In addition, John will also begin his radiation treatment tomorrow.  This will run every day for 6 1/2 weeks... taking weekends off to give John's body a chance to recover.

We know there are several side effects that comes with chemotherapy, John has been given the long list of things that he "could" or "might" or "should expect" to experience... but this will all be taken in stride. John was anxious to start treatment, but he is also relieved that this phase is finally beginning. There is an end goal in sight that we have never taken our eyes off... so having to endure what could, might or should  happen during this phase is all par for the course...John is ready for what is to come....and if you know him well...you know he is capable of getting through anything!!

Much to be Thankful for….

We are nearing 4 weeks post surgery and on this Thanksgiving weekend it seems appropriate to acknowledge how extremely thankful our family feels right now. John has been recovering slowly but surely since he left the hospital, taking it one day at a time to get stronger and healthier. The surgery was the start that we had all been hoping for and it has greatly set the tone for what should turn out to be John’s best race yet. 

During the past few weeks John has had several appointments with his surgeon, radiation oncologist, medical oncologist, dietician, counsellor, dentist and opthamologist.  They are what make up his team!  Each one of them will play a vital role in ensuring that John is on pace and that he is doing what he needs to for a successful finish to this race.  So far, after another CT scan and PET scan, John shows no sign of “disease” that can be visibly detected (nothing greater than 5mm in size) throughout his body. While this is fantastic news, we are still optimistically cautious given the nature of SNUC and the aggressive tendency it is known to have.  However, the surgeon and oncologist are very happy with John’s present state, he is one of the lucky SNUC patients where surgery was not only a possibility, but where the removal of the tumor in its entirety along with the margins surrounding it, was a complete success.  This gives us all great confidence going into John’s radiation and chemotherapy treatment that will occur concurrently; 6 weeks of radiation along with 4 cycles of chemotherapy will be administered over a 12 week span. Although the start date for this has yet to be confirmed it should begin within the next few weeks.

For now John is getting back on his feet, eating well and gaining some weight for what is to come, he is also trying to enjoy being mobile, taking the time to watch the boys football games and visiting with his friends and family. His energy level is still lower than he would like it to be and not feeling like “yourself” has been extremely frustrating for John at times, but a Marathon of this nature is not going to be easy.  Each mile from here on in will be different then the last, some miles will be smooth sailing on flat road with the breeze at his back, while others will be gruelling with steep terrain and head winds pushing him down. Whatever the case may be, John has this!!  He is a fighter and will do anything it takes to finish this race! 

Today, on behalf of our family, I wanted to say thank you, which doesn’t even seem adequate for the extraordinary support so many of you have shown us whether it has been rides home for the boys, meals you have made, treats you have sent, gift cards you’ve mailed us, well wishes you’ve given, phone calls you’ve made, text messages you’ve sent or emails you have written, all of it means so much!  We know we are not in this alone, we know that there are countless people who love and support us every step of the way…and we know that whatever lays ahead, we will be able to face it with all of you cheering him on!

Thank You, Thank You, Thank You!! 

Keeping Pace....

Probably one of the most important aspects to John’s Marathon training is finding that sweet spot where he can sustain his energy level throughout the race. This way, at the end when the finish is in sight, he can step on that gas pedal and give it all he has left in the tank.  During his runs he meticulously keeps track of every minute and every second from one mile to the next and disciplines himself to stay on track.  On race day John wears a wristband that shows him what the time splits should look at each mile marker so that he doesn’t get too far ahead of himself, or fall too far behind.

We are at day 5 post surgery and John is right on Pace!  Today the Doctors have decided that he is well enough to leave the confines of the hospital walls and continue healing in the comforts of home! His surgery went very well and the surgeons are extremely pleased with how everything went.  In a 12 hour surgery there is a lot to get through and there is always the uncertainty of the unknown.  John was fortunate to have an excellent team of Doctors who were prepared, motivated, and highly skilled. They went in fully understanding the importance of getting every last speck of cancerous cells in order to give John a decent shot at beating this "thing" we have come to know as SNUC.  These Doctors have helped John set the pace for what is next in the many miles ahead.  The race has just begun and we know they will be here to make sure that at each mile marker John’s splits are looking good and his pace is on track to where it is suppose to be.

There is a lot yet to accomplish before the inevitable treatments of radiation and chemotherapy begin: Dr.’s appointments, a PET scan, meetings with the cancer clinic’s dietician, dentist, counsellor, oncologists and so forth…but for now, John can find contentment in the rhythm one finds in the early stages of a race... and for this one; sleeping in his own bed, eating “real food”, gaining his strength back, and being continuously showered with love and support from his 3 boys, countless friends and caring family might just be that perfect rhythm he is looking for!  The course he is on is still unknown so he will have to tread lightly, however, there is definitely an optimism and the anticipation that all will be as it should…and really, why the heck shouldn’t it!

                                               Post Surgery:   Day 2 - Recovering well

Day 3 - Walking about!                                                         Day 5 - Going Home!

 

                                               Day 5 - What Matters!