Vacation Daze

We are home from Pittsburgh. The ‘Burgh is my home town and this was John’s first visit so I felt some pressure to have the City of Champions make a good first impression. And it did.

That’s the pleasure of going home as an adult and as a tourist—I know what I wanted to show off so we stayed on the waterfront downtown and visited the The Scaife Mellon Art Museum and the Carnegie History Museum (my refuge as a kid) and we ate very, very well. We took the incline for dinners up on Mount Washington and the trolley to breakfasts down in the Strip Yards. And the best part for both of us was watching the Pittsburgh Pirates beat the Miami Marlins at PNC Park. Beat ‘em Bucs!

So many memories. Most of them good. But I also found myself narrating my caregiving history as we traveled around Pittsburgh: “This is the hospital where my mother was first admitted; this is where I brought her after her stroke; this is where she lived in her coma; this is the hospital where Larry was finally diagnosed; this is the hospital where I brought Larry every week; this is the hospital where he died.”

And there were other things that I did not say to John but that came back to me in such vivid memory: the route from the airport when I came every other weekend to take care of Sig and then Larry; the restaurant where he fell down and couldn’t get back up and my ache for him over his humiliation; where I shopped on what turned out to be the day of his last hospital admission; the hotel in Oakland where I stayed all those nights so that I could walk to the University Medical Center.

e.e. cummings say that our lives are measured in tea spoons but I measure mine in hospital visits and loved ones cared for.

It was fun to be in Pittsburgh as a tourist and not a caregiver—to reclaim my hometown as an arts rich, sports fanatic metropolis. To perhaps balance the other memories by making summer vacation memories there with John.

Vacation Reentry

Home from vacation.

It was a week of eating well (Federal Hill in Providence RI), art (Brown and RISD Museums), books (The Providence Athenaeum, and 20-plus used bookstores across Rhode Island and Massachusetts) and yes, the beaches. Ocean smells and swells for days.

We had fun, we laughed and we talked as we drove. There is something about that side-by-side parallelism in the car that allows intimate conversations. The “what-if” talks and the “do you think…” questions.

But this is where I write about cancer and so I must admit that cancer was with us too. I noticed two brown spots on his thigh. Are they new? Had I not seen these before? There is little real estate of the flesh we don’t know of each other. Are these age spots or melanoma? This kind of thinking is a constant part of love in the time of cancer.

On the long drive we talked about later, the future and when we retire. I participate and enjoy planning the fantasy homes (beach or city or both?) but there is a parallel conversation that runs inside me: Will he be alive next year? Will he be in chemo again? Will the beautiful fabric we bought for our bedroom chairs be a painful reminder? Will I sit on that pale ocean blue and sand beige paisley alone some day remembering when we spotted it in that shop on this vacation?

Cancer in the News

Here is another soft spot or minefield for those who love in the time of cancer. While John is in-between treatments and we live in a kind of honeymoon state…no obvious signs but blood work in thirty days (tick, tick tick…) I read the papers.

This week two cancer stories:

Breast cancer research shows that even the teeniest involvement of a cancer cell in a lymph node signals high probability of recurrence. (They use the word "relapse" but that make cancer sound like an addiction and that it comes back thru the failing of the individual. We blame the victim enough already in cancer, can we not call it “relapse”?)

No John doesn’t have breast cancer but I read (worry) between the lines. He had those cells, he had lymph involvement. Cancer is cancer, right?

Next story is bad testing, errors in labs, so much cancer not caught thru medical error. Ok obvious fear trigger there.

And then he coughs and I get three for three.

Yes, all fear, worry, and my crazy head. But I know the other cancer lovers feel this. It gets us in the heart.

But good news: We are leaving for vacation tomorrow. Two city days for music, museum and food and five beach days for reading, walking, and time to quiet my fearful heart and just be together.

Oh yes, sex too. Lots and lots of vacation sex!

Return from Vacation

Home from vacation. Sunshine. Wearing white. Wearing pastel. Wearing sleeveless shirts and colorful rubber flip flops. Each day I texted my beach report to my pal, Leslie, a fellow mermaid. The ocean changes color daily and has different moods as well. As mer-gals we treasure this variation.

The trip was good. A visit with John’s mother and sister. Fabulous food. Feeling free to be affectionate in front of family. Waking to the sound of mourning doves and bird song. Our own birdsong at morning.

Home now to rain and cooler weather. A day alone for laundry, library, dry cleaner and drugstore. A few groceries for our own meals again.

While we were away a friend died. He had been diagnosed with lung cancer a year ago and made it this far. Two weeks ago at John’s oncology check up we ran into Tony picking up his medications from his oncologist. I introduced the two men and we laughed about cancer. Tony’s memorial is today at five.

Body and Brain

I’m reading a wonderful book called, “Proust Was A Neuroscientist” by Jonah Leher. He’s describing how artists—in different fields—anticipated and sometimes better explored what we have come to know now from neuroscience.

He writes about what Walt Whitman “discovered”—that our bodies have or are our brains—feelings generated by the body not just the brain, “the mind is embodied.” What came to be though of as Whitman’s bawdiness was in fact his discovery and delight that our body thinks and our minds feel.

Whitman’s discovery and celebration was so important because it followed years of Descartian thinking—really thinking. Descartes had divided being into two distinct substances: a holy soul and a mortal carcass. The soul or mind was reason and thinking, the body just carried that soul around. Descartes thinking led then—here’s where it gets weird—to Phrenology—studying the skull. The worship of the brain became study of the bone around it. It’s amazing now to realize how much medical attention, study, research and, yes, medical treatment was based on phrenology.

Yes, we laugh and roll our eyes. But wait. We think that study of the skull makes no sense but someday we’ll look back and have the same embarrassed look when we think about PET scans and CAT scans, “Look, they thought the physical structure of the brain was evidence and prescriptive..how odd and dumb they (we) were.”

Mind and body, brain and soul. Back and forth we go, trying to understand these beings that we are. Spiritual beings trying to live human lives. Human beings carrying around and caring for our souls.

Tomorrow I’m taking brain and body, mind and soul on vacation. I need rest for them all. And John too. Off we go to Florida, sunlight and the dearest god of respite I know: the ocean and the beach.

We’ll be back in seven days.

This story of love in the time of cancer will continue then.

Long Weekend

We are back from our long weekend. I must remember this. I must. Being away—even for just a few days—is such good medicine. For my heart, for my head, for my body. Last week I was running myself into the ground. Working and still sick. Finally four days away and sleeping, walking, laughing and nothing that HAD to be done. I know this is good but I forget. Or I convince myself that I can’t afford to go away, that I cannot leave the office. But I can. I have to change the way I think. But maybe I have to change my behavior and make myself go even when I think I can’t. God knows it’s been said: God rested on the 7th day, books on sharpening the saw, putting on your own oxygen mask before attending to others. I know. I know. But today, being rested, happy and the real gift—creative—I get it. God help me to remember this.

A Day at the Beach

I am at the beach and having my week alone. The cottage I rented is perfect. It’s like a doll house. A one person house with living room, office area, small dining area and a kitchen. There is one small bedroom with space for one double bed, a night table with clock and lamp, and a small built-in counter that serves as a vanity. There are lamps everywhere. This is a house for reading. The woman who owns the house is a photographer and it makes sense. It’s a teeny tiny house with perfect lighting. Anywhere you sit you can also read.

I have come here to write and I have come here to remember me. I need to remember me before him. I need to feel my edges again. I need to recall what I like to read, eat and watch on TV. That is one of the surprises. Watching the tiny television—everything is doll sized, my sized—I watch Gossip Girls and Desperate Housewives. I do not watch baseball. In the car I listen to WGBH—Boston’s NPR station. I like the news, I like the political analysis. This is better NPR than we have at home. I brought music and I brought spiritual talks on CD but I love listening to WGBH. I do not listen to music.

I do not wear makeup here. I take a shower at midday after I have been writing and after I have been to the beach. My hair is fine without a blow-dryer. I look at my face without makeup. This is my face. This is me.

I am at home here. Inside this cottage and inside of me. I do not want to give this up.