Trevor's blog: "The Nightmares in our Cancer Closets"

Today, I’m nervous.

My stomach is unsettled, a familiar low-level nausea that kills my appetite and makes it uncomfortable to move around. Then, when I think about what’s coming up, the anxiety rises through my chest and into my throat.

My scans tomorrow — an MRI for my liver and abdomen, and a CT for my chest — are the first scans since I began immunotherapy treatment three months ago. 

Immunotherapy is my latest shot at eliminating the cancer in my liver, which spread from the original tumor in my colon. 

My medical dream team (two oncologists and a surgical oncologist) is optimistic about this treatment, because I have a relatively rare form of colon cancer that makes me an ideal candidate for immunotherapy medicines. In some people, this treatment can lead to long term remission or even a cure. 

But it’s far from a sure thing. The scans will tell us if the treatment is working. 

At my last round of scans in August, there was only one small tumor in my liver. We want to see stability (tumor is the same size), regression (tumor is shrinking), or complete response (tumor is gone). 

When I think about getting the results, I imagine the radiologist’s report going something like this: “The liver enhances homogeneously. The lesion previously noted in segment IV is no longer present. There are no other suspicious lesions and no evidence of metastatic disease.”

N.E.D. The holy grail for cancer patients. If you get to N.E.D., you’re doing a happy dance, no matter where you are when you get the news, no matter what the future might hold, no matter what the doctors tell you about your chance of recurring. 

So yes, I imagine that happy dance.

But here’s where cancer really messes with you.

I have dark thoughts, too.

What if the report isn’t good? What if my tumor has grown, and there are more tumors in my liver, and possibly my lungs? When you’ve had lots of scans and lots of bad news, these fears are the sticky residue of emotional trauma.

Today, I have thought about the conversations that would need to be had with my wife, Sarah, and our daughters, if the scan isn’t what we hope for. I don’t want to tell them, yet again, that my cancer is still being stubborn and we need to keep at it. They have kept at it enough. 

As I make this admission — that I’m nervous and having some scary thoughts — I can hear the whispering voices of judgment.

Don’t think negative thoughts about your scans. 

Just think positive.

Imagine your cancer is gone, and it will be gone.

These voices — real and imagined — have swirled around my headspace over the past 20 months since diagnosis. People close to me, as well as strangers, have given me well-meaning advice along these lines. 

If you are a fellow patient and this mindset works for you, more power to you. 

It doesn’t work for me. 

Last year, I gave the “only positive” mindset a try. After my first liver surgery, I was absolutely certain I was cured. I visualized a completely clear body. When a negative thought emerged, I did everything I could to shove it out of my consciousness, usually by means of distraction. 

That approach made the emotional fallout even harder to deal with, when my bloodwork and scans showed a recurrence. 

It felt like failure. Maybe I just wasn’t thinking, eating, or believing the right way. As a culture, would we put that same expectation on people with other health conditions?

Would we say, “Imagine your pancreas is fully functional, and it will be,” to a person with Type 1 Diabetes?

How about saying “Just believe you can walk” to a person who has suffered a traumatic spinal cord injury?

When I realized the “only positive” mindset wasn’t a fit for me, I had to find a different approach. Gradually, through counseling, reading, talks with friends, and much self-reflection, I latched on to a piece of wisdom from the Buddhist traditions. 

Be open to all experiences and outcomes, but attached to none.

Take, for example, my scans tomorrow. I’m open to all possibilities. I’m hopeful for great results and I imagine that will happen, but I don’t cling with desperation to that outcome. I acknowledge the possibility of receiving difficult news. 

This allows me to focus more on the present moment. It’s a mindset that reflects my spiritual beliefs — that I am a creation, not a creator.

It also reflects my beliefs on science and medicine. I can improve my health through positivity and taking care of my body and mind. Science has proven this. But that power is limited. I don’t believe I have omnipotent control of my health. 

Far wiser men than I have tried, and failed, to think themselves to a cure. 

It’s normal and sane to be afraid. In fact, fear is perhaps the best evidence of my humanity. It means I want more time on this earth with my family and friends.

So, when the anxiety rises and the dark thoughts come, I try not to push them away. Instead, I get right up close to them. I examine them in compassion for myself. And when they pass, which they always do, I appreciate the light more than ever.