choosing the questions to ask

Hello dear folk,

Val’s feeling fairly well today, although the usual post-chemo stuff is starting up.  Her digestion’s a bit wacked out; the steroids make her face reddish and puffy and wake her up early; that sort of thing.  She notes that each chemo cycle it seems that the effects are less severe, but start up a bit earlier and last a bit longer.

We had a lovely mellow afternoon hanging out in the yard, playing with the dog (and her tiny terrier pal, Guinness), and catching up with garden chores like mowing the front lawn (to raise the bar for the new neighbors), and thinning the raspberry canes according to a magazine article Val read in the bathroom.  I also worked on refining my hula hoop technique.  Today’s challenge was to learn to go counterclockwise, while simultaneously avoiding A) musculo-skeletal injury or B) causing Val hysterical apoplexy.

Just to mix things up a bit, we started the day by donating our brains to science.  By which in this case I mean, we talked for two hours to a lady with a clipboard, answering questions from Somewhat to Very to Not at All, and counting backwards from twenty.

This was all in service to cancer research.  OHSU (Oregon Health & Science University) is doing a study sponsored by the American Cancer Society called “The Family Living with Lung Cancer: Perceptions and Outcomes.”  250 people (125 “lung cancer families”) are enrolled in the study.  A friendly researcher with shiny dark eyes and a warm smile (and a clipboard) arrived in our kitchen at ten o’clock this morning, and proceeded to interview us each for an hour.  First Val walked the dog while I answered a wide and rather interesting array of questions, and then Val answered the questions while I weeded the garden and planted the last of the fall chard.

The lady with shiny eyes asked about my perceptions of my partner’s health; my own physical and mental well-being; what sort of support system I/we have; and various indicators of affection, stress, conflict, and functionality.  Can I concentrate at work?  Does my family member listen respectfully to my opinions?  How many times in the last week have I felt “down in the dumps”?  Do I have trouble putting my shoes on?  How’s my family support?

There was also an amusing section in the middle to figure out if we were basically with-it: memorizing a Chicago address, running through distracting tasks (like naming the months in the year backwards starting with December) and then repeating back an earlier phrase.  Also drawing overlapping pentagrams (which measured how long it had been since we’d taken geometry).  I think I passed that section although I noticed she didn’t tell me I could skip a grade.

There will be follow-up interviews every three months for a year, for which Clipboard Lady left behind about ten laminated cards to guide us through the seventeen question scales. You know, things like:

• Always – Seldom – Never
• Extravagently Much – Somewhat – Not Hardly at All
• Lightly Sautéed – Flame Roasted – Chicken Fried

Afterward, Val and I compared notes about how most of the questions – How “blue” do you feel on a scale of A Lot to A Whole Lot? – presupposed an anxious, rather isolated experience with cancer.  Not that it’s actually, you know, Sunday in the Park with George; there is a river of grief in me. But it’s not the only current that flows from this cancer experience. I thought it would be fascinating and maybe revelatory to include questions from a broader perspective.  Like:

How much do you agree with or scoff at the following?:

• Cancer has brought my community together to nourish me.
• Cancer has made friends of my acquaintances, and family of my friends.
• The experience of cancer has opened doors for me into other people’s lives.
• I’m totally curious to see what my/my partner’s new hair will look like.
• Living with cancer drives me to distill art and meaning from my life.
• Cancer has made my experience of life astonishingly vivid.

Thanks for helping us invent new questions to ask.

Love,

Deborah