Sunday, July 27, 2014

What not to say to someone with cancer

Dawn sky
I did not post an entry to this cancer journal last week because another five-day round of chemo had me pretty much flat out beat, exhausted, energy depleted. When that happens, you’ll find me on a bed somewhere, either reading or sleeping, often both at the same time.

This month’s MRI and visit with the neurooncologist went OK, though my wife and I admitted to some dread beforehand. You don’t know what the news is going to be. Swelling around the tumor site was down a little, and my platelet count looked promising for that next round of chemo. My left hand and arm remain mostly numb and may stay that way, though I have some sensation of touch, pressure, and temperature.

Hard to describe: I encourage anyone reading this to fully appreciate the complexity of neural sensations that interrelate without our conscious awareness most of the time and permit us to perform everyday tasks requiring hands and arms. Meanwhile, I have recovered the ability to touch my left index finger to my nose with eyes closed, though I suspect I have relearned that somehow in the same way I relearned how to tie my shoes and floss my teeth.

I continue daily meditation, usually first thing after getting up in the morning trying for 30+ minutes. I have come to see the mental “noise” in my head during meditation as a given, like having two children, one quiet and compliant, the other precocious and wanting attention. In meditation, I am the parent to both of them, playing no favorites but “loving” each of them, a kind of multitasking that seeks not to seek or aim for some objective, merely to find a resting point between the two. Another delicate balance, the phrase I often find myself using these days of this “new normal.”

Half moon in morning sky
The discipline of meditation has illuminated the “old normal” in unexpected ways. I find just by reading posts on Facebook how easily fear and anger trigger stress and anxiety for me, and my need for control. I see how quickly I demonize others when I could put into practice (and boy do I need practice) a more soul-friendly and calm-inducing effort like forgiveness.

Something else I’m relearning is not to be easily influenced by my moods. They lift and fall of their own accord, and are often linked to my energy level, which I’m more acutely attuned to now that cancer has taught me to honor my limited reserves of it. Old news, but seldom fully respected, moods are like interior weather, which goes through cycles of change; here now, gone later. I get into trouble when I identify with them. My moods are not who I am.

Though I have used emotional detachment in my life often to ill effect, it helps me now to keep moods at bay. When the hospital begins sending voluminous, complicated bills, I can compartmentalize my dislike and suspicion of their billing system and methodically sit down with my wife to figure out how they have been double billing us for services (and they have been).

Morning walk, San Jacinto
The Old Ron would’ve gone ballistic at this discovery, but I could shunt the fear, anger and anxiety to the side and concentrate on the task of figuring out which bills had been paid already and which not. “You are so objective,” the oculist at the Eye Care Center says when I tell him about my cancer. I may be heading for a Big Surprise, but I can’t imagine being otherwise. A dark mood can sweep me under, and as long as I can, I mean to keep my head above water.

Something I can't help resenting, though, is the way cancer is used as a cheap plot device in movies and TV. (It’s also a handy way to dispatch unwanted characters in fiction, but that’s a subject for another day.) In the women’s prison series, “Orange Is the New Black,” there is a bald inmate with cancer (funny already, right?) upchucking from her chemo (good for another laugh). And don’t get me going about “Breaking Bad.” 

I was grateful when, in the final episodes of HBO’s “Treme,” a favorite character with cancer was allowed to die with some dignity. The truthfulness of his home hospice care and the deathbed vigil of those who loved him touched me with its honesty.

Deserving mention are two things I depend on: 1) My regular haircut by my wife, who is a real pro with the electric clippers, keeping the bristly fuzz on my head down to what feels like 1/8 of an inch. 2) The monthly men’s breakfast at Denny’s, which my neighbor leads each time with a thoughtful homily. They are a friendly bunch of decent men, unguarded and warmly welcome to my less than rigorously held religious beliefs. They are a reality check for me when I get to generalizing about evangelicals.

Evening storm clouds over Joshua Tree
Now for the header at the top of this post, “What not to say to someone with cancer.” The Internet being what it is, this topic is already well covered at several websites, (See “Further reading” below). The problem I have with all their warnings about what not to say is that they make another person even more reluctant to say anything at all. My answer to the question of what not to say is "Nothing."

Maybe I just have a thick skin, but I can’t believe I’m so different from other cancer patients that I would prefer people I know to choose silence rather than risk offending or wounding me with whatever they might have to say. For me the hardest reaction from others to accept has been that silence.

I don’t need greeting-card words of comfort or encouragement. What comforts and encourages me is the knowledge that life goes on for you—no faster than it does for me, one day at a time. And I get that when you simply talk about what you’ve been doing: reading, traveling, cooking, shopping, watching movies, your work, your plans, whatever has brought you enjoyment, excitement, or ignited your interest. 

Sharing these lets someone like me know there’s been room for me in your thoughts. They cut through the isolation that this illness can stir up. They say, I haven’t forgotten you. And that doesn’t require a lot of words. A few will do. Just not nothing.

Further reading:

Previously: No Rules



16 comments:

  1. Aye, Just had a bowel cancer tumor removed. Had people avoid saying anything and others admitting they didn't know what to say. At some point it should be noted that it is there, it exists, but it does not define us.
    Hmm, I may use that in a post of my own soon, but feel free it you'd like to adapt it for yourself.

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  2. Thanks for sharing your thoughts Ron. All good stuff. Personally, I do find going ballistic over something like double billing a sign of mental health.

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  3. I'll try not to say anything that will make you go ballistic, Ron, but I am reading your book "How the West was , , Written" and am enjoying it. I like the way you laid it out and discuss the various aspects of the books under consideration. And I'm looking forward to the next volume.

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  4. Your words are so gorgeous, so beautifully put down here, I must read them three times to see them clearly.

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  5. So beautifully put down here, Ron. You make my heart swell.

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  6. Well, in regards to all that. Lana and I got up at 3:45 this morning and took a two hour drive to a place where we hoped to see flocks of wood cranes. Instead, we found a couple of small alligators, some swallows, and flocks and hordes of mosquitoes. And we'd forgotten our Off. But no wood storks. Still, it was good to spend time together, and on the way home we stopped at another park and had a few good sightings of birds.

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  7. Very nice post. We took a drive up in the Laramie range to see the buffalo today, nice trip. And like Oscar above, I am also reading and enjoying, "How the West was Written". On another matter I have had the bristly fuzz on top for more than a decade.

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  8. Ron, your journal is truly inspiring. Thank you for sharing your thoughts on many of life's issues that I can relate to. Regarding the mental "noise" in your head during meditation, the yogic instruction is to be a mere spectator, one who stands just outside the circle and merely observes the mind's acrobatics within the circle. I believe the key is not to give one's mundane thoughts any significance or react to them in any way, but to let them come and go, as a means to thoughtlessness. Climbing Mount Everest seems a less daunting task. Best wishes, Ron.

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  9. I find myself elevated by each of these explorations. Thank you for sharing your innermost life with usw.

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  10. Being a curious person, I can't help but ask people with cancer what their first symptoms were. Once they reveal that and see that I'm a listener, they can talk more about it or not. I prefer sudden heart attacks for writing out characters, myself. You are so insightful, Ron, about yourself and the world around you. I bet your long-time friends will say you've always been that way, though you deny it.

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  11. Thanks, everybody for your good words. Much appreciated.

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  12. Ron, like many others I am here at least once every day to check on you, and will keep doing so, even though I am not always punctual about leaving a message. Keep writing.

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  13. During her 3-year battle with ovarian cancer, I learned that I would know what she needed from me if I just listened. So that's what I do. Listen.

    Reading your beautiful post, Ron, I want you to know I'm listening. (and praying for you and your wife.)

    Also working hard on the 4th novel.

    Take care, and thank you for these posts.

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  14. I'm following your amazing journey with a great deal of awe, Ron. I hate to use the cliché inspiration but that best describes your courageous attitude and thank you so much for writing these posts down for us.

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  15. Further thanks, sir. Life on this end is full of small inconveniences, and a hint of peripheral neuropathy, but may we both be able to find things to read and write about for years to come. I'll aspire to write as graciously as this post.

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