My cancer journey. You see it with a hashtag attached to it and if you spend anytime talking with someone who has cancer they will often mention it.
What is it, you ask? In short, it’s a way that the cancer community politely says “I will never get used to this f’ed up lifestyle that is caused by this disease that, while the medical community continues to make great strides in curing, still throws curve balls at me, which often leave me feeling confused and alone but, despite all those associated lows, I still experience some incredible days that are full of awe and wonder.”
Really, though, what is it?
Well, it’s a journey for sure but maybe the easiest way to explain it is to think about it as a hike.
This is how the hike plays out:
One day you’re sitting around the house or maybe at work and the phone rings. It’s your doctor. You just went and saw her the other day because you just haven’t been feeling all that great. She confirms the worst fear you have about your health. Quickly, though, she lets you know that there may be help available for you in the form of a hike.
She goes on tell you that it will be a difficult hike though, tougher, in fact, than any hike you have ever done. She doesn’t say it but you infer what she means: ‘This hike is often worse than your current health issues and, quite honestly, not everyone finishes it. Best of luck to you.’
A week or so later you start hiking. You would have preferred to start immediately but there was a ton of paperwork you had to fill out first, both for work and for your insurance company. Insurance company? Why do you need permission to go on the hike, you ask? Well, you don’t. Unless, of course, you don’t want to pay for all the expenses yourself and then, well, you do.
At first the hike is pretty easy. Almost becoming routine, you march forward, one foot in front of the other. The days tick by and you occasionally pass other hikers. They’re all friendly but many of them look worn down and seem to stumble along the trail. You stop to chat. After all, you’re all on the same journey, right? You try to hide your alarm as some of them mention that this is their second, third or even fourth time on this particular hike. It is also about this time that you first hear about Ned, whose name is always said with reverence, as if he is some mythical and elusive unicorn.
By the third week this hike is really starting to wear on you. You can’t pinpoint exactly what it is that’s causing your incredible fatigue. Perhaps it’s the fact that all your food has begun tasting like metal. You know you should eat because you need the energy but somedays you just don’t feel like eating. In fact, the more tired you get, the less and less you feel like eating at all.
When night falls you are thoroughly exhausted. You’ve actually been exhausted all day but you’ve had to keep moving forward, whether you wanted to or not. You continue to pass others on the trail or perhaps they pass you because, to be honest, you’re not moving very swiftly. Some of these passersby offer their most sincere words of encouragement. They tell you that you are a warrior and inspiration! You hardly feel like either of those things, though. You just feel tired and in desperate need of sleep.
As your head moves in a slow arc toward your pillow, you smile at the restoration that you imagine will ensue. Your soft pillow and fluffy down sleeping bag, both of which were so warm and comforting just a few weeks ago, rub angrily against your sensitive skin and irritate it to no end. You seize. What’s up with you, Skin? Your flesh is so immeasurably tender that the slightest touch immediately sends a rush of tiny embers of pain richocheting throughout your body. Your skin is cracked and peeling. An Oil of Ole model you are most definitely not. You plead with your skin to mercilessly stop and allow you to sleep and sometimes, just sometimes, it relents just enough to get through the night.
When you awake the next morning, however, you are usually no more rested than you were the night before. By the way, why are there clumps of your hair floating around in the tent? Weird. You touch your hand to your head and come back with a handful of hair…
Now you are taking on the same look of some of the other hikers you’ve seen on this trail. You’ve gone ahead and shaved your head. Why bother and wait for the slow and inevitable loss? Bald is beautiful, right? That’s what all the hikers say, at least. They continue to cheer you on. Like it or not, you are now a bald and inspiring warrior. Or so you’re told. In truth, you just feel like shit.
You’re not sure how much further you can go on this hike. You talk to others and hear stories about other hikers who gave up on looking for Ned. You’re still not even sure about this Ned guy. All you know is that it is imperative that you find him. You ask them why others gave up on Ned and everyone seems to have a different explanation.
Many hikers simply run out of money, as their insurance companies (if they even have that luxury) provide such little financial assistance that they have no other choice but to make the futile attempt to pay for their own medical expenses. Almost inevitably, those people are overrun with debt, which is so incredibly burdensome that it weights on the them like a 500 lbs backpack. With each step forward, this gross and unrelenting weight on their backs causes people to bend over further and further until they can hardly lift their heads enough to see the trail ahead of them. You think back to your first “bill” for this hike (a whopping $36,000!) and count your lucky stars that your insurance covered as much as it had so far.
Absolutely NO ONE has chosen to go on this wretched hike, yet it becomes obvious that some are better prepared than others. Some wear fancy hiking boots and carry carbon walking sticks. Some are even afforded a sherpa to carry their packs for them. Others, however, walk along on their tired and badly blistered bare feet, all their belongings stuffed in a paper bag.
This rude lack of equality weighs heavily on you but, like so many others on this trail, your own pack has gotten so heavy that all you can do is trudge forward, eyes on the ground, one foot in front of the other. You promise yourself that when this is all over you’ll give back and help make a difference. Again, though, you’ve got to find this Ned guy first.
What sucks is you still can’t eat. It hurts to swallow. Hell, it hurts to breathe. You’re losing weight. As the pack shifts and pulls across your shoulders it leaves weeping open sores. Some of your fellow hikers tout different kinds of miracle creams to help with the painful sores. Their suggestions help but only temporarily. You often wake up stuck to your sleeping bag in the morning, as all the sores oozed and then dried throughout the night.
The sun has beaten you when you arrive at your next camp. It is quite dark and a small group of hooded hikers sits around a fire. You stand on the edge of the shadows and listen to their quiet conversations. They talk about those hikers that are still seeking Ned. Some, they say, will find Ned and move forward, continuing to contribute to society for many years to come. Others, sadly, will come close but never actually find Ned. The figures roll the bones and make notes on their tally sheets. Your eyes grow big in horror. Tonight you sleep in the bushes, as you’re afraid to enter the circle of campfire light.
Your feet drag like the days. On and on and on. And then…
NED, 1o Miles
You can hardly believe it! For real?! Your pace and heart quicken. The day, however, drags on as does the next one and the one after that. NEVER has ten miles taken seemed like such a long and unattainable distance! You try to remain optimistic about the rest of your hike but worry and doubt have pushed against your thoughts and they slowly take over.
What if Ned isn’t there? What if I don’t make it?
You keep pushing and pushing yourself until one day you look up and you realize that you’ve finally found him!
NED!
No Evidence of Disease. His is the name that every cancer patient wants to hear. Some hear it sooner than others while still some never do. Others hear it more than once, as their cancer journeys often start over. Sometimes months later. Sometimes years later.
Finding Ned is undoubtedly the most joyous day for every hiker on this path. The grueling back-breaking pack of doubt, worry and anxiety you’ve been carefully balancing has finally and mercifully been removed. You take a deep breath and stand up a little straighter, a little stronger. You are now ready to face whatever is next for you, which, hopefully, is a trek far, far removed from that which you just endured–and survived!
That is a cancer journey.
