Maybe Dying, Maybe Not

 

“I am going to die.” We took a poll in my cancer support group, and that’s what each of us thought when our doctors said we had cancer. 

As it is for my friends, the thought of dying is never far from my mind. It is a possibility, and my oncologist hasn’t said that I’m not, so I exist in a netherworld where I hold my breath and wonder when it will happen and how. He actually thinks I’m doing quite well. He said so, after I asked, because the dread of dying was weighing heavily on me that day. 

Of course, after I left his office, I wondered if I was “doing quite well” only in comparison to other men in my situation. I noticed that he didn’t say my cancer was gone, which is what I really wanted to hear, and he didn’t give a date when he would know. Maybe he’s seen the cancer in too many men take a wrong turn. Men with high risk, aggressive prostate cancer like mine do die, and some do so unexpectedly. 

Data points stick in my head from the reading I’ve been doing trying to comprehend the conundrum I’m in, like how forty years ago men with advanced prostate cancer would be dead in two years, and how twenty years ago men whose cancer had metastasized and were being treated were dead in three. Because of advances in cancer research, metastatic men are now living for five years and beyond. So there is hope, and I cling to this.

I’m not metastatic or Stage 4 but it doesn’t feel like I’m out of the woods yet because I’m a high Stage 3b. A year ago my medical oncologist had to do a quick retest of my PSA after six weeks because my PSA number jumped and this surprised him. Generally he runs this blood test every three months. If the results are good, then I know I have another three months when I don’t have to worry. Since then, my PSA has continued to bounce around and I go into every doctor’s appointment with trepidation.

If I’m only “maybe dying,” can I write perceptively about what dying feels like? Can I talk about the anguish of listening for the last time to crows cawing in the woods today if there’s a chance that I might return and listen to them again? When the Buddhist bell clangs to guide the dying home, am I allowed to listen if I’m not sure I’m going?  

Would my focus change if I knew for sure that I was dying? Yes. It would also change if I knew for sure that I wasn’t. Until I know otherwise, I am going to focus on what is going right and celebrate every good thing I can find.

I’m fascinated with the stories of people who knew they were dying of terminal cancer and took the time to write about their experiences because they provide a view into the unknown land I’m facing. Their words bite with insights. They speak of the light in the sky being opaque, of colors becoming brighter, of images sharpening and deepening in meaning, of life slowing down to where they notice small items of beauty around them that they had missed before, and how many of the tasks that they used to stuff into their days really don’t matter. They also speak of the shadows that appear along the edges. 

The writers I’ve come to value include the poets Ilyse Kusnetz, Julie Hungiville Lemay, and Katie Farris. Kate Bowler writes about dying, too. She had Stage 4 colon cancer and lived two months at a time between her check-ups. Experimental immunotherapy in a clinical trial brought her situation under control, although it didn’t for many others in the study and they died. She details this in No Cure For Being Human, her second book on her cancer treatments. She will be monitored for the rest of her life. 

Andrea Gibson dealt with the physical and mental depletion of Lyme disease before ovarian cancer showed up. Andrea confessed that the one emotion they had never let themself feel before getting cancer was happiness, and they began to embrace this as they were dying. Andrea’s poems ring with the encouragement to live every moment of every day you have.

When you have cancer, you live in a worry castle. What would you do if you thought you might be dying? Would you start saying goodbye as you inch towards the door, or would you push the hope endorphins and begin to plan what you’re going to do when you’re cured? As you wait, since there’s not much else you can do except worry, you try to be helpful to others who are suffering, and you try not to think that every new pain is your cancer growing. We took a poll on this, too.

Because cancer and the treatments made me dependent on others for help, and the anti-hormone drug loosened up my emotions, every unexpected act of kindness moves me to tears. It’s sometimes embarrassing. I don’t know at what point the fear of dying will go away. If my cancer is determined to be gone, I will take stone of fear off the desk in front of me, where it’s been sitting for three years, tuck it into my pocket, and go on living knowing how easily everything can change.