Living with a terminal cancer diagnosis can make you feel like the Boy Who Cried Wolf. You never know when the end might come and yet there seem to be ample warnings that it could be just around the corner. Not wanting to be caught off guard or leave loved ones in the dark, we take these cues as signs to do things like say goodbye or express feelings and thoughts we had always kept private. Then, low and behold, our condition improves and we put aside these heavy emotional messages and try to resume life as normal always with the knowledge that eventually our search for closure will be prophetic after all. Many of you will feel as though you’ve read these words before, that I’ve warned the end is near before that I am only serving to heighten the drama of my situation by constantly talking about it. All I can say to that is there is growing urgency behind my words. Each time I have some kind of medical development followed by a meeting with my doctors, it seems that a bit more hope is removed from my prognosis.
The truth is that neither our doctors nor the little voices in the back of our minds truly know when the end will come. Having had a few brushes with what seemed like “the end” I know how confusing and devastating it is. The mad rush to try and say all the things that have been left unsaid. The realization that you’ll never see or do all the things that are now physically impossible because of your weakened condition. The reckoning that all those you love so much and who love you in return will no longer be together. It’s almost palpable the feeling that is created. The loss. Opportunities, dreams, plans and hopes all just crumble in front of your eyes and you do anything and everything in your power to keep them alive but in the end comes the realization that those efforts are fruitless. We all exist here for a finite time and none of us get to choose when or how our time here will draw to a close. We can do our best to influence the kind of legacy we leave behind but how we will be remembered and what kind of imprint we will leave on the minds and lives of others are things that beyond our control.
With all that said, I feel the need to reach out again and say that I think the number of tomorrow’s in my future is probably quite small. The problem with having a rare form of a disease is the lack of accepted treatment regimen’s that go along with that disease. Every decision is based more on common sense and deduction rather than hard science or proven track record. We employ drugs in combinations that have never been tried using delivery methods that we hope will be effective. In many cases, we use treatments which are not meant to be used for our condition at all but because of chemical formulation, logic and sometimes a bit of faith, we think these treatments might also benefit our case. That has been the model with me recently. After trying two rounds of aggressive surgery, radiation and four rounds of chemotherapy using different conventional drugs, the past year has been reduced to one big science experiment. I have been an active and willing participant in this research, combining the recommendations of my doctors with my own alternative treatments all in the hopes that we could buy some significant extra time. Better still and perhaps a bit foolishly, I believed that a miracle might be possible and that one of the treatments might produce some kind of remission or maybe even a complete break in my symptoms…for a time.
Sadly, this disease has proven to be a powerful and relentless foe. It has systematically adapted to each and every treatment we have thrown at it. It has lost small battles along the way but in so doing, the core of the beast grew stronger and more resilient and came back more determined each time.
That brings us to now. If you combine the original mass in my jaw along with the ulcerated lump that has pushed through to the outside of my neck, the inside of my throat, my shoulder, my back, etc. I would say that I am dealing with a tumour easily the size of a large grapefruit and probably quite a bit larger. It is highly vascular which is to say that there is a spider web of blood vessels weaving throughout the structure of this monster and it bleeds uncontrollably all the time. Two or three times daily, I have to change the dressing on my neck and two or three times daily, I get stuck in the washroom for the better part of an hour as I try to get the bleeding to stop. Each time I wonder if this might be the one that sends me to the hospital or worse still, the one that causes my carotid artery to rupture. I wonder how far the blood will spray across the room and what kind of mess I will leave behind after I lose consciousness. An arterial bleed would leave me with precious seconds to respond but in all likelihood, I wouldn’t survive the event. Still, knowing what kinds of other fates lie in wait for me, I often think that an arterial bleed would be a good way to go. It would be quick and painless and providing the blood didn’t also drain into my throat (causing a drowning and choking sensation) it could be one of the best ways for me to meet my end. Recently, the tumour in my throat has swollen to the point that my tonsils and uvula rest on my tongue all the time. I constantly feel as though someone has their hand wrapped around my throat, squeezing down, threatening to pinch of the last bit of remaining airflow I have left. It seems to get worse at night and I often wake up in a panic realizing that I am unable to draw breath as quickly or as easily as I would like. I can’t imagine many other sensations that can cause as much panic as the feeling of suffocating. The though of waking to that feeling has dominated my thoughts over the past few days. Every time I eat a meal, I have to hold my breath with each mouthful of food and hope that I inhaled enough air to get me through the process of chewing and swallowing. Trying to inhale through my nose only makes the problem worse and increases the feeling of panic. Plus I have to consider the kind of foods I eat and liquids I drink because many will cause an excess of mucus to be produced in my mouth and that is often enough to block off what little remaining airflow I have left. It makes it feel as though the back of my mouth is filled with glue.
Each day is worse than the last. The swelling of the tumour seems unstoppable. The closure of my airway advances a bit more every day. The pain caused by the growths in my jaw, shoulder and back varies between a constant state of 5 out of 10 on the pain scale to being unbearable. I checked into the ER on Tuesday night because I couldn’t tolerate the pain. It took several hours of intravenous narcotics to get the pain under control and even then, all we managed to do was mask the underlying cause. As a result, I am taking massive amounts of narcotics every couple of hours in an effort to stay ahead of the pain.
But this isn’t life. This isn’t living. This is existing. It is enduring. I can hardly interact with the people I care about most because the pain, the distraction of my laboured breathing, my decreasing mobility and about half a dozen other things serve as such a distraction that I can hardly keep my place in a conversation. I feel like a distant obserserver to my own life except the narcotics have played such havoc with my short-term memory that I can’t even remember the things that are done and said around me from one moment to the next.
I live in constant fear and pain now. I have lost my ability to see the humour in any situation, instead sinking further into depression and anxiety with each new development in my condition. I harbour so much anger and resentment toward this disease and in fact, toward the world for what has happened to me. Piece by piece, I have watched the components of my life be stripped away to the degree that I have virtually nothing left to call my own anymore, My relationships with my family have all be compromised. My amazing wife, without whom I could not survive a single day of this hell now, has not had a proper husband by her side in months. She says we are partners and that she will stand by me through anything and indeed she has been nothing short of my guardian angel but I can’t return her affection, attention or devotion even in a fractional way because of how this disease has stripped me of my independence. My mother has to watch her only child and indeed, one of the only surviving members or her family fade away into a shadow of what he once was. No parent should outlive their child. My friendships have all devolved into a race of sorts, to ensure that we can see each other while there is still time. Each visit with each friend feels like it could be the last and often has the atmosphere of a living wake. The career which I loved so much is gone. I sacrificed years of my personal life as I happily developed my skills in an area that I have wanted to call my own since I was 12-years-old. Being paid to do something you love is a rare gift. Discovering you have a natural talent in that area further reinforces the motivation and heightens the rewards that come with a job well done. I can’t even listen to the radio anymore because it is all just too painful a reminder of what I have loved and lost. On a smaller scale, I can’t snowboard, golf, bike, swim or rollerblade anymore because I don’t have the strength, the dangers of injury are too high and all of those activities would cause too much pain…but I deeply love all of them and miss them terribly. I’m almost always sedated on heavy painkillers which means I can’t drive a car, another passion of mine. The list goes on and on.
The end of this long note brings us to the most important detail. My doctor thinks it may be time to stop fighting nature. With good reason, he believes that the chemotherapy has lost its edge and is no longer providing much, if any benefit to me. After all, what is the point of taking a drug which is only causing me pain and suffering without returning any net gain? My doctor doesn’t want to treat me to the point that the medicine itself may kill me and he feels that we have arrived at that point. The one thing that is clear is that my disease is relentless; we have seen plenty of evidence in the past showing how quickly the tumours begin to cause massive damage without the presence of some kind of medical treatment, so if I cease doing everything, my remaining time will be short. I am faced with a decision that I hoped I would never have to make. Fatalistically, I had always hoped that the decision would be made for me because the magnitude of this choice and the implications on how I will be remembered are just too profound for me to handle alone. But it seems that I will be thrust into making the choice myself whether I like ir not. I can’t tell you what I will do only that this is the most powerless and futile a position I could ever imagine a human being compelled to face.
Whatever happens next, I want it to be known that I could not have survived as long as I have without the love and support of those closest to me. For those of you who are more distant friends and those who joined to read about my story as it progressed, let it be known that your words kept me focused and determined to be a better person and to use my position for good rather than self-pity and for that you all have my thanks. We all have a purpose on this planet but few of us get to know what that function is. My purpose here is clearly meant to be fulfilled in a shorter period of time than many others. Maybe I was put here to bring attention to this disease and remind others of the importance of compassion and understanding. Given how much I took my own life for granted in my younger years, perhaps I was sent here to be a reminder to others about how not to live. There are countless reasons why I think I might have been put on this world and many more reasons why you might think I was put here. I suppose all that matters in the end is that hopefully I leave a legecy that is more positive than negative and perhaps even better, that I will leave an essence of sorts that might even prove beneficial to others at some point. I hope so. I draw all my best qualities from the people around me who I respect the most so if I have done or said anything worthwhile over the years then I mist thank my network of amazing people for inspiring me.
It seems there is always more to say. I don’t know how to end this nor do I feel like I have even scratched the surface of the subjects I’d like to discuss. For now, if I have any advice to leave it would simply be to try and leave the world a little bit better than you find it each day. It takes so little effort to spread your influence in a positive way. Don’t judge. Try not to be overly critical of others. Remember how good it feels to receive encouragement and positive reinforcement and try to spread those things on to others. Each and every one of us is capable of being a better person. How we face our challenges is what truly defines us as people and it is much easier to set a positive example by facing our challenges with determination and positive resolve rather than with negativity. There will always be people with problems that are greater and lesser than your own. We all must live through our personal challenges at various times in life. Do not compare your issues with others but rather try to appreciate how you can learn from one and other. Like I said, there’s always more to say. I have only just begun to learn how much I don’t know about this life. I wish I could have more time to put into use the lessons I have learned. I wish I didn’t have so many unrealized ambitions. I wish I had made better use of the time I had..
With some luck and some love, I’ll have more to write in the near future but if that doesn’t happen, thank you all for being a part of my life.