Saturday, June 30, 2012

The Bitch in the Test

Yesterday morning I left the house cursing like a cartoon character. The string of profanity coming out of my mouth was G%R&A&*^%$#!!@$!!!--and kind of like James Joyce was writing bad words—the nastiest things all strung together with no punctuation…

At work I was better outwardly but inwardly I was a mess of cranky, scared, sad and, well, just disconnected. Luckily it was Friday and luckily I had a lot of basic tasks to do. Head down and uncomfortable I worked the day away.

But still. Yuck.

John’s son came for dinner so I thought maybe it was the stepfamily stuff. It’s always hovering there in the polite way we talk and how carefully we choose our topics when together. We don’t use these words: wedding, marriage, divorce, Mom, sex or affair, and I’m the only one who will say the word cancer out loud.

And I did. That was it. After dinner John and I talked about plans for the weekend and he reminded me that Sunday plans were out because he’d be doing “The Prep” and it hit me:

His big test. The in-hospital colonoscopy, performed by our favorite surgeon is Monday morning at 7am. Oh. Dam. Oh Dam. All that cranky, out-of-sorts misery is about cancer and chemo and The Test racing toward us.

But we are a different couple three years later. And I am a different woman. I said, “Sit and talk to me.” So we bundled on the bed and talked. I said, “What if..” and he said, “It will go like this…”. And I said, “I’m going to be hard on you this time….” And he said, “I’ll listen this time…” and we laughed. And laughed. We played the “If Cancer Comes Back” Game. We talked about our voodoo beliefs and the deals with God we’ve each been making. I was happy to hear the words “beach” and “diamonds”.

Looking forward to making love tonight because Sunday is not an option. The Prep is a mess in every way with its pills and solutions and salves and timers. But the real prep began last night laughing about what used to be and what could come and how we’ll do it together.

Tuesday, June 26, 2012

Affordable Health Care Act

Here is  a new column called "Bedside" in the New York Times --about nursing and healthcare. This first article by Theresa Brown --an oncology nurse--details how changes to The Affordable Care Act impact cancer treatment.

Take a quick look.

Saturday, June 23, 2012

Medical Reimbursement & Cancer's Return

It’s time to complete the benefits election paperwork for both of our employers. We have stacks of paper from his job and from mine. The pile has moved from kitchen counter to dining room table to the living room floor and back to the kitchen. I remind him, “We have to talk about this.” and “How much should we put in the medical reimbursement account this year?” I’m avoiding it too, pushing the task to him, noting my particularly unfeminist separation of duties.

This has gone on for a month.

Last night, annoyed that the pile of papers is back in the living room, I nag again “We have to turn those in on Monday—let’s decide how much to put in this account.” In my head its all about the number—how much should we designate pre-tax to allow for medical expenses next year? My internal juggle –I assume—is about making sure we have enough to cover dental for two adults, eye care for two sets of aging eyes, and enough for deductibles, co-pays and prescriptions. It’s a calculation.

Why is this so hard? Why are we procrastinating?

My annoyed voice bothers him so at 11pm we get out the calculator and paper and start in. “OK, so if we each need new glasses this year, and if we assume we each need a crown and a couple of cleanings, and what about any medicines?” But as we talk my stomach starts to hurt. Really hurt.

And then I realize that what we are not talking about is this: What if cancer returns? How do we do that calculation? How do we guess at those huge copays and the multiple prescriptions? But really, how do we talk about this seemingly money thing, which has nothing to do with money?

My stomach hurts. I take a breath. I say to him, “This is all about cancer.” We choose this number now, but on your next test in July we’ll know for sure if the cancer is back. Then what? And the “what” isn’t about the money. I tell him that we talk about cancer and don’t talk about cancer. It’s always out there. Out there in the tests and the meds and the lingering neuropathy, and it’s out there in the obituaries of people younger than us who “endured a brave battle with lung/breast/colon/brain cancer.”

But this simple form that asks for a single simple number has yanked cancer into our living room hard and fast and frightening.

We sit up and talk. The number was easy. The conversation was not. But we’re not so far apart in our numbers or our beliefs about what to do if and when. “We have great sex,” we say, “and we can have great cancer and even great death.” We can do this.

It is intimacy of the most devastating kind and the most real. 

Thursday, June 14, 2012

Vulnerability Backlash

Oh the morning after! I’m having a vulnerability attack after reading in public last night. The Arts Center of the Capital Region invited me to read from the new book and from my collection of essays and I talked about this blog and John’s cancer and our relationship, and about “The Amy Winehouse House”.

The best validation was watching the faces of people in the audience that I know are part of Cancer Land—they got it. They know the condescension that accrues around cancer and the pastel politics of treatment speech. But I also worry that I shocked some by calling Lance Armstrong “One Ball”. But really. And now reading today’s New York Times, if “One Ball” turns out to be “I doped my own balls”….what will we do with all those yellow bracelets?

But my overall feeling today is run and hide. I went out in public and read out loud. And now, well, just breathe into it, and wear pink, I guess.

Saturday, June 9, 2012

Fashion Tips for Caregivers at Chemo

The question arises: What should a caregiver wear to chemo? There is no official dress code but think again. My favorite look: Khakis with a black linen shirt worn over a black tank top (layers are good) black ballet flats (they signal a causal insouciance) and my new necklace—black pearls inserted among silver waves. This is the gift from John: subtle, stylish and very me.

Hospitals, doctor’s offices and even at chemo-Looking good makes a difference. Leave the sweat pants and polyester at home. Go for neutrals, polish and natural fibers. (There are enough chemicals in CancerLand for everyone.)

Diana Vreeland, the legendary editor of Vogue wrote, “The one presenting the most style has the most power.”  In this powerless situation, style is a consolation.

Wednesday, June 6, 2012

God. Help. Us.

And I mean that literally. In yesterday’s New York Times story about the Vatican’s censure of Sister Margaret A. Farley for her book about human sexuality there is a quote about the Catholic Church’s view of masturbation. Masturbation, self-pleasure, sanity-making, stress-relieving, coping mechanism. The act that may keep teens from having sex too early and that may keep marriages intact and that may keep adults of all ages sane and healthy (Dr. Oz please weigh in here.) No.

Regarding masturbation The Vatican said, “The deliberate use of the sexual faculty, for whatever reason, outside of marriage is essentially contrary to its purpose.”

How in God’s name can this help anyone? And what does the Catholic Church say to couples in CancerLand who have lost part of the “sexual faculty”. It’s time to vote with our checkbooks. Or go immediately to your local Episcopal Church and sign up.

Sunday, June 3, 2012

Happy Birthday Baby

Yes, it’s John’s birthday, and instead of getting smaller, his birthday gets bigger and more special. The American Cancer Society has as its tagline the phrase, “The Official Sponsor of Birthdays”. Kudos to whomever wrote that. I hope they got a huge bonus because they nailed the mission and the meaning.

For birthday 61 John gets three celebrations.

Last night was the Big Date Birthday—out to dinner, all dressed up, appetizers, mocktails and even dessert. That’s a splurge for us in dollars and calories. Tonight the small “family” dinner—Dave shares his birthday with Susan so we have a two-fer supper. Home cooking—something for everyone—vegan, sugar-free, sugar-plus, high protein, lo-carb and instead of a cake we have the extraordinary Graetners ice cream. Tomorrow the sexy celebration--behind closed doors—with candlelight and another extraordinary dessert!

Each birthday we celebrate together has that feeling of one step away and one step toward. So it becomes a joy to make them happy and funny and sexy.