The emotions of cancer

"How are you doing, John?"

We ask that question - how are you doing? - without even thinking. Most of the time it's a nicety; we don't really have an emotional investment in the person we are asking so don't really care what the response is. Usually they respond with something mild and banal - fine thanks, or something similar - and if they go into shocking detail we recoil and start looking for the exits. But since I was diagnosed with cancer, a lot more people ask me this question with a lot more intent than they used to.

Of course people care about me. People care about other people - that's what helped us evolve and survive as a hunter/gatherer society. And I'm a generally good person that people tend to like. But here's the thing - I actually care about them, too. So now, when they ask how I'm doing, I actually answer them truthfully. For the most part, my response is something along the lines of "really good right now," but sometimes it's a little off that mark.

So many people have commented on how positive I am or how great my attitude is since I got my diagnosis. This doesn't represent a change though - I'm a pretty positive guy for the most part. Maybe I wasn't always that way; as a child I could be downright morose at times for example, but as an adult I try to see the silver lining instead of the black cloud, the part of the glass that is full rather than that which is empty. Living with cancer is really the same as living with anything else, so I really don't see any good reason to get all glum and depressed because of my diagnosis.

But that doesn't mean that joy is my only emotion.

Sharing my emotional state struck in a previous post a chord with some of the people close to me. They thanked me for my posts that are more about the emotional journey that I am on than about the details of my treatment. To honour their need to know how I am doing emotionally, I thought I would share a few of the emotional highlights of my cancer journey;

Contemplative

This one isn't really that much of a stretch for me. Although I am a moderately socially gregarious extrovert, I do spend a good amount of time in my own head just thinking my thoughts. I'll admit that I really should spend more time doing that before I say things sometimes, but that's not really the point of this post. No, the contemplation I am describing here is more about the bigger things in life than about whether I say the right thing or the funny thing in a given situation.

Being diagnosed with cancer is big. Like, really big. I am doing my best to show a degree of grace and dignity with the news, but it's not as simple as being told "oh, you have a perforated eardrum. Use these drops twice a day for five days and it will heal on its own."

That was the last, most major medical issue that I had to deal with in the decade before being told I had cancer, by the way.

When I perforated my eardrum there was little to think about. I realized that I shouldn't fly or ride my motorcycle because of possible disturbances with my equilibrium, but aside from that my contemplation was pretty much done when I got my prescription filled. I've had a ton of prescriptions since being diagnosed with cancer, but none of them so far will actually treat the disease, they will only deal with adverse effects.

Life changing, not life ending. Those five words are how I have realized my diagnosis affects me. My life will never be the same now that I was diagnosed with cancer; even when I am considered 'cured' I will still require biannual colonoscopies and heightened surveillance against prostate cancer due to the radiotherapy that I will be undergoing. My colorectal anatomy has changed and while it will recover to a degree, it will never be the same as it was the morning I went to the hospital for my surgery. But those are inconveniences really; the biggest life changer is that I will never be able to un-hear the words "John, you have malignant colorectal cancer."

My generally optimistic outlook is part of a generally engaged and positive lifestyle. I enjoy a wide variety of pastimes in addition to my career, and the inevitable fallout of my cancer could at the very least have an impact on my ability to engage in those activities. That would have a trickle-down effect on how I engage with my family and friends and with my environment, which could spiral around to make it more difficult for me to remain positive and even attempt to engage in the activities in the first place. It's crazy-making, really, and so I think a lot about how to avoid a negative spiral due to my diagnosis.

That is one example of how I can get lost in my thoughts, but there are others. A big one is that my wife and I are in the phase of our careers where we are looking seriously at retirement and what that would mean to us. How does my diagnosis change those plans? Will we still be able to do the things we wanted to do? Will we have grandchildren (I know, this is outside our control but we think about it anyway) and if so when? 

There are a million questions that are all clamoring to be answered. I need to take some time to think my way through the most important ones and put the others in a box under the bed where I can comfortably forget about them. 

Freaked Out

A good friend asked me if I was freaked out about how fast everything is moving. As I write this it is just over four months since I got my diagnosis and I have already had an additional colonoscopy, two MRIs, three CT scans, major surgery, and a half-dozen sets of bloodwork drawn. I start five weeks of radiation and chemotherapy in a couple of days, and after that's over I will finish the balance of six months of chemotherapy alone. It's a lot of stuff to have happen in not a lot of time.

While there have been contemplative times for me, there are other times when the news comes too fast or the questions all shout at me at once to be answered. I get overwhelmed, and like anything or anyone asked to deal with more than it is designed to I start to shut down. I lash out at the people closest to me, not because they deserve it but simply because I have enough collateral with them to risk the repercussions. I cry at times, frustrated that I am just not enough to deal with all the things that are in front of my at that moment. And I have moments where my thoughts turn dark, when I wonder if I will actually survive my diagnosis.

But those are moments, not my life. 

I attended a two-day conference from work on the weekend. While I am officially off work for medical reasons, I still need to keep current with my continuing professional education and this offered an opportunity to take care of some of this obligation while also allowing me to connect with my professional community. It was exhausting - I underestimated how tired I can get doing things that used to be simple - but it was so worth it. Not for the education (as good as that was), but because it offered me perspective. 

I still have a whole world of support, a whole world of friends and colleagues who are rooting for me. I got so many hugs and had so many brief but intense conversations with people that matter over the short time of the conference, and each one recharged my batteries a little bit. So even though I was exhausted when I left the conference, I was also rejuvenated by the connection with my peers.

When I get overwhelmed - not if, but when - I need to remember that the questions clamoring to be answered can, for the most part, wait. I need to remember that there are so many amazing people in my corner, ready to offer hugs or rides or anything that I need, if only I ask. I need to remember that those moments of being freaked out are just that - moments. And if I keep some perspective they will pass.

Envious

This one was big on my mind last week. I've written in other posts about my "new normal" regarding my altered anatomy and how I have struggled a bit to change my diet in response. I'm still not making much headway there, so while I am not experiencing the more serious aspects of LARS (Lower Anterior Resection Syndrome), I still have some changes related to my bowel habit. I am trying to figure out how to eat and what to eat to cope with that, and as I do that I am making some mistakes.

One big one, it turned out, was curried chicken salad. I love curried chicken salad - it's so simple but so tasty and so easy to make. I made some last week and ate it and loved the experience.

Until the next morning. Then the spices in the curry made their way through my gastrointestinal tract and made their presence known, not to put too fine a point on it. I was in agony for a day and a half as my irritated colon dealt with the meal that I thought would be a good idea. And that is one simple dish.

I used to eat tons of fresh fruit and raw veggies before surgery. I'd often laugh at the difficulty that some people have eating five servings of fruits or vegetables a day because my typical lunch would have seven to nine. But all those fruits and veggies have a ton of fibre associated with them, and right now at least I don't need added bulk in my stool. And I really miss those fruits and vegetables.

I love the good food available at our local pubs. The problem is that I can't tolerate the richness of that food nor the quantity of it any more. So last week, every time I drove past a pub in town I thought longingly of the food I used to order there and how tasty it was and how much I enjoyed it. I thought of the people in the pub right now, eating their tasty food like it's no big thing. And - yes - I felt more than a little envious at them and at the life I used to have.

It's a small thing, really. It's just food. But food was a big thing to me before my diagnosis. Having to adjust my diet reminds me that I have cancer. Not being able to eat curried chicken salad reminds me that my life will never be the same, and I envy that former life.

Is that envy reason enough to discard all the other good things in my life though?  

No. No it is not.

Frightened

I get scared, sometimes almost debilitatingly so. I am, like, 98% positive that I will kick cancer's ass (pun fully intended) and be declared cured. I am about 1.9% open to the idea that this may not be the end of the road for me with respect to cancer. I already know that I need to have a colonoscopy every six months, for example, and that I will be on heightened surveillance for other cancers. 

What if the adjuvant chemotherapy or the radiation doesn't do the job that they are intended to? That's a possibility - however remote. That's just how statistics work. 

That leads to the final 0.1%. That 0.1% gets scared, and it usually gets to drive the boat in the dark.

I wake up sometimes certain that I won't survive this diagnosis. More often than that, though, I wake up wondering if I won't survive. I don't seriously believe it, but that annoying little voice whispers what if in a corner of my mind and in that moment the rest of the world is quiet and still and those two tiny words echo like a gunshot in a canyon. I am startled and scared by them, which is weird because they are my words. 

I shouldn't be startled of a gunshot if I'm the one holding the gun, right? But what if the gun goes off and I'm not expecting it?

Yeah. That can be terrifying.

It's pretty normal - to be full expected, even - to be scared. And while it doesn't happen often, I would be lying if I tried to tell you I was never scared about what I face. I'd also be lying if I said that was my only experience.

The best counter-emotion for fear is either love or humour in my opinion. When I'm scared, I hug my wife and feel her love enveloping me. I look at the smile on my niece's and grand-niece's face when we video chat and I feel their love enveloping me. I accept the hugs of friends and coworkers and feel their love enveloping me. And if none of those people are around I watch a talented stand-up comedian on TV and the laughter quietens the echoing of that gunshot in the canyons of my mind.

I suppose I could be scared all of the time. This is a very scary diagnosis, after all. But my life is rich and full and wonderful, and so when I do get scared there is something amazing nearby to help me realize that I don't need to be scared. I can feel it and let it pass.

Angry

Go to your favourite search provider and type the words why are men so angry in the search window. 

I got 346 MILLION results. 

I hate being defined by anything - my career, my height, my diagnosis, and definitely by my gender - but the fact remains that I am a middle-aged male raised in the western world. I may be better than most men at being emotionally accessible and honest, but our culture historically didn't do a very good job at allowing men to experience and express a full, wide range of emotions. So, being the simple creatures that we are, men chose one emotion and just went to town.

Anger. It's the home run swing of emotions for most men. 

I have to admit that I am quicker to love than I am to anger. But just like I would be lying to you if I claimed to never be scared, I would also be lying if I tried to claim that I never lose my sh*t and get angry. It happened before I was diagnosed with cancer and it has definitely happened since.

It's always a little jarring for me, almost like I am having an out-of-body experience or something when I get angry. I try to reason with myself but the bulls are raging and they will not be calmed down, thank you very much. I feel helpless and petty and like I am better than my behaviour, even while I hear my own angry words come out of my mouth. But eventually the bulls tire and I can put them back in their pen where they are safe and calm.

So... yes, I get angry too.

Even I can admit that I have good reason to be angry. It is profoundly unfair that I somehow grew a potentially fatal tumour in my rectum despite eating a healthy diet and being otherwise completely healthy. It is unfair that I have never smoked yet I developed this cancer. 

UNFAIR!!

See? It's hard not to be angry when you are presented with profound injustice, right?

But the truth is that is is not the injustice of the situation that makes me angry. I can actually accept the statistical variation that is my diagnosis with more grace than you might imagine. So why do I get angry?

Well, I'm no expert on me, but I think that in my case my anger is actually rooted in fear. When that gun goes off accidentally in a canyon, my brainstem presents me with two very simple choices - fight or flight. Flight makes me scared so I can run as fast as I can, and fight makes me turn and angrily face the imaginary tiger that I hear growling in the bushes.

That sounds like an incredibly bad idea, doesn't it? Attacking a tiger? It's insane!

And that's what anger is for me. Insanity. It may be justified or at least understandable, but it serves no real purpose. I just have to let it burn itself out and then clear away the ashes as best I can and rebuild. I guess it doesn't matter so much why I am angry and it sure as hell won't change the fact that I am even if I knew.

Like my fear, when I am angry I just have to let it happen, try to figure out why it happened, and move on.

Acceptance.

And that brings me to the final emotion that I feel - if you can call it that. 

Acceptance. 

It is the final stage of grieving and is the foundation of the first stages of behavioural modification. I have to accept that this is my life now, that no matter what I might have planned or might have wanted, I now have a life that includes cancer. 

But I don't accept that my life is nothing more than cancer.

I accept that cancer has changed my life, but I refuse to accept that it will end it. I accept that for the short term I have to go through some discomfort so that in the long term I will have a full and happy life. I accept that my diet may never be what it once was and that I will need help from a registered dietitian to figure out a new diet that works for my new normal. I accept that I will have times when I am thoughtful or overwhelmed or envious or scared or angry and that even though I may not be proud of my behaviour in those times, they are my behaviours. 

And no single behaviour defines me. Just like no single diagnosis defines me.

I accept that I have cancer. I do not accept that my life is worse because of it. And so I accept that joy should be the theme of my life, accentuated at intervals with other very human emotions.