Given Time: Living Our Last Months Together

By Helen Park Bigelow

Relishing the last year together, through heartbreak and chemo Above all, this is a love story. Two strong, artistic people face the kind of diagnosis nobody wants. With searing effect, this memoir shows the full dimensions of terminal illness interspersed by tales of a colorful, unusual past. Given Time is both heart-wrenching and surprisingly uplifting.

• Language: English
• Publisher: Daniel & Daniel Publishers
• Release date: Mar 4, 2015
• ISBN: 9781564747808

Book preview

Given Time

Living Our Last Months Together

Helen Park Bigelow

2014·FITHIAN PRESS, MCKINLEYVILLE, CALIFORNIA

Copyright © 2014 by Helen Park Bigelow

All rights reserved

Printed in the United States of America

ISBN: 978-1-56474-780-8

The interior design and the cover design of this book are intended for and limited to the publisher’s first print edition of the book and related marketing display purposes. All other use of those designs without the publisher’s permission is prohibited.

Published by Fithian Press

A division of Daniel and Daniel, Publishers, Inc.

Post Office Box 2790

McKinleyville, CA 95519

www.danielpublishing.com

Distributed by SCB Distributors [phone]

Cover photo: Detail, Figure with Fence, David Park, Courtesy of Hackett | Mill, representative of the Estate of David Park. Photograph by Edward B. Bigelow. Courtesy of Mark Gottlieb.

LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA

Bigelow, Helen Park

 Given time : living our last months together / by Helen Park Bigelow.

      pages cm

 ISBN [first printed edition] 978-1-56474-553-8 (pbk. : alk. paper)

1. Bigelow, Ed, 1937–2010. 2. Bigelow, Helen Park 3. Terminal care—Psychological aspects. 4. Terminally ill—Family relationships. 5. Death—Psychological aspects. I. Title.  R726.8.B4985 2014

 616.02’9—dc23

                             2013035822

These things happen to people.

—Jim Harrison, Returning to Earth

For Ed Bigelow and for everyone who loved him

Acknowledgments

Deep gratitude goes to my writing tribe with whom I have met regularly for so many years. Lorraine Capparell , Connie Crawford, Ann Davidson, Mary Lee McNeil, and Elena Silverman, all you lovers of words and givers of wisdom, thanks for listening, thinking with me, reading my work, and caring.

Special friends and readers Pixie Couch, Mark Gottlieb, Ann Jauregui, Clair Jernick, Bibbi Lee, Andrea Scharf, and Linda Seale, thank you for your encouragement and thoughtful ideas. Extra thanks to Linda Seale for serving double duty as computer guru.

Much gratitude goes to reader Victoria Golden. Although we’ve never met you gave generously of your time and thoughts.

To Julia Moore, editor and friend, once again I send biggest thanks and love.

To my family—my sister Natalie Park Schutz, my cousin Nancy Park, my daughters Terry Tobey, Kat Wilder, and Peg Pierce—your love, support, ideas, and interest, plus your years-long ability to read yet another draft of my work with new vision and interest mean everything to me.

To Dr. Ellen Brown, hospice physician and reading group pal, thank you for giving your time and knowledge.

Lasting gratitude goes to my long-ago writing teacher Adair Lara, whose wisdom guides me still.

To writers and poets Natalie Goldberg and Al Young, thank you for time, talk, friendship, help, and for believing in me.

To my publishers John Daniel and Susan Daniel, thank you for your sensibilities, help, and kindness. I am so glad to have worked with you.

And Ed, Edward Burr Bigelow, you with the bright shining eyes, thank you for all our many years, and for the rest of my life.

Contents

Acknowledgments

1. The M Word

2. The Big Blue Envelope

3. The Vow

4. The Palo Alto Cultural Center

5. The Stress Sponge

6. Chemo

7. The Beginning of Houses

8. The Word Grace

9. Daffodils and Awfulness

10. Survival by Cookies

11. Ed’s Family

12. Rain, Sleet, Snow, and the Internet

13. George and the Guys

14. Proof Sheets

15. La Para

16. Moments

17. A Life

18. Special Events

19. Too Much

20. Hope

21. Disappointment

22. A Change

23. The Owl

24. The End

Coda

About the Author

1. The M Word

No premonitions warned me. Nothing about my husband, Ed, warned me. Having a biopsy of a bit of skin from the top of his head was not of great concern to either of us. We’d each had one or two skin biopsies in the past, and reports had come back that all was well. So on an evening in September, 2005, while tidying up the kitchen after supper, I felt perfectly comfortable and at ease. Ed was sixty-eight, I was seventy-one, and we lived in a house on a hill on the island of Maui.

In the living room that evening, Ed and our big white cat Moku sprawled on our garage-sale rattan couch, Ed switching around between different news programs on TV. The telephone rang and I answered. It was our dermatologist.

Those few minutes remain sharply in mind—the slight forced quality in the doctor’s voice, me faking a casual response at hearing from him. He asked for Ed, and I stepped into the living room and handed over the phone. Back in the kitchen, I stood listening. In a minute I heard Ed say, Melanoma? His voice sounded strange, and inside of me something froze, caught. The path we were on smacked against a sharp corner and even as I felt it we were already in the turn.

When Ed was through talking with the doctor I went into the living room and sat across from him. He nodded at the question on my face.

He’s surprised, Ed said. It didn’t look like melanoma or skin cancer of any kind.

I said, And it is?

Ed nodded. We looked at each other. Sometimes in our long, close marriage those looks were a much more efficient and fuller expression than words. They were especially significant because we each knew so well how the other one felt. Somewhere in that moment we had reached across the small space between us and were clasping hands. I felt extremely, carefully, calm.

I asked Ed what else the doctor had said, and we started down the new path. The next day we saw an oncologist, Dr. Adler. He arranged a consultation with a surgeon, arrangements were made at the hospital, and the small bump would be removed by the end of the week.

— —

According to what we were told later, the melanoma on Ed’s scalp was probably set up when, as a fair-skinned toddler, Ed often played on the shores of Lake Michigan, getting summer sunburns near a birthmark on top of his head. When he was a young teenager the birthmark was removed by a San Francisco specialist who cautioned that someday the area might be a problem. Evidently someday had come. We were told that fair-skinned men of Northern European extraction were getting melanoma in numbers resembling a plague, the way women get breast cancer.

Not knowing this, or ever thinking much about melanoma, Ed had regularly taken himself to a dermatologist to have his skin looked over in case there were any problems. We’d been living on Maui for about five years and we took long walks on the beach several times a week. Ed always wore a hat and had never once sunbathed or worked up a tan, but he knew he was getting a lot more sun than was normal for him. A professional photographer and computer consultant, Ed’s normal was working in offices or, camera gear slung about his torso, climbing road banks or across gullies in pursuit of a photograph. Basically, though, he was an inside kind of man, and his skin had been getting increased attention from air and sun.

— —

Removal of the bump of melanoma turned out to be more of an ordeal than expected. My middle daughter, Kat, who also lived on Maui, sat with me in the waiting room for a couple of hours. She was in her early fifties, teaching English at the community college, and took a day off for us. The hospital had a new wing but we were in the old one, sitting on stackable chairs. A table stood with its legs in empty, rusted tuna-fish cans. Probably the cans were supposed to hold water to catch and drown ants and cockroaches and keep them from climbing to the table and its jumble of ancient magazines.

It was a humbling place, as all hospital waiting rooms are, where it is impossible not to think of all the other people over the years who have sat there in seeming composure and underlying stress and fear. We’d been told the excision would go well, and there was nothing to worry about. Nothing except melanoma.

Kat, also a writer, had come with a manuscript that we were going to talk about and work on, as we have done with so many manuscripts over so many years. It is work we love to do together, but that day concentration did not come easily. Another woman was there, whose adult son was undergoing extremely complex surgery. The three of us spoke in the intimacy of physical details and emotional distress.

Finally after two long hours Kat and I were told that Ed was in the recovery room. We walked for what seemed like at least a mile, finding one wrong place after another until at last we sat outside a regular hospital room, not the recovery room at all. We were not allowed to enter. Several generations of people milled around the next room, talking, watching babies, sharing bags of different foods, playing the ‘ukulele. They were local people, friendly and warm, and it turned out that one of them was in Kat’s canoe club. They were all there because an old grandfather was in the room, dying.

Hours later Ed was released, and while I wheeled him down to the hospital exit, Kat hurried off to get my car. She had come in her own car but made an instant decision to leave it overnight and drive us home. It was good news to me, as I happened to be suffering from a horrible bout of plantar fasciitis and walking was extremely painful.

I’d left my car in valet parking but the night staff had moved it, with nobody telling anyone where it was. Kat charged all over all the parking lots looking for it. She kept returning, on foot, looking more and more outraged, and insisting, at the desk, that someone must know the location of either her car or ours. No one could help her, and finally after another half-hour she found it and brought it to us and we could go home. It was eleven at night and we’d been there since mid-morning and were starving. The hospital had nothing to eat except for candy, chips, and horrible chilled sandwiches.

Once in the car, we found two Tiger’s Milk bars in the glove compartment and divided them between us, actually giggling over how exceeding delicious they were. A half-hour later we were home and Ed went straight to bed. Kat and I sat on the edge of the bed with him as all of us wolfed down scrambled eggs.

Healing was slow. The incision lay in a curve on Ed’s scalp, with many stitches, for the melanoma had been deep and they had removed a lot of margin around it. The entire area was left spotlessly free of contamination from malignant cells. Ed fussed and worried over the wound, all his latent hypochondria charging to the surface. The wound healed, he finally felt well and confident, and so we started the routine that lasted for a year and a half: every three months, Ed had thorough scans of various sorts, plus blood work, chest X-rays, and ultrasounds. Each time he came out clear of any hint of melanoma. The word remission was never used by the doctors. With each intensive checkup, the cancer simply appeared to be gone. Our confidence increased.

— —

All during 2008, I was completing the manuscript of a book about my father, David Park, a well-known painter who died of bone cancer in 1960, when he was forty-nine. The book, David Park, Painter: Nothing Held Back, was finally with the publisher. It contained over a hundred color images of my father’s paintings. For the more than thirty years of Ed’s and my relationship he had been archiving photographs of ­David’s work. We’d shot paintings and drawings in homes, galleries, and museums all over the country.

So 2008 was our year of intense shared effort while I selected paintings for the book and put in long hours honing and polishing the manuscript, and while Ed remastered and digitized the old 35-millimeter slides. The book was an enormous, complex job, and in November of that year, I sent off the final manuscript and digital files.

Our good friend Lorraine was visiting for Christmas. Her husband, Lars, and Ed had been very close and Lars had recently died of cancer. It was Lorraine’s first Christmas alone. She asked me about the cancer scare and how Ed was, and I said okay, fine, he’s fine, the tests always come out clean as a whistle—except—and I hesitated. Then I told her I didn’t think he looked well. I said, I don’t like the color of the circles under his eyes.

Lorraine was the first person I mentioned it to—that I thought he looked deeply exhausted, that rest and sleep did not seem to refresh him. This was an observation of something that had outlived Ed’s and my post-book fatigue, and I hadn’t acknowledged my concern before, not even to myself. It reverberated within me when I said it to Lorraine. In some inner compartment I associated the way Ed looked with what he and I later called the M word.

This brief, memorable conversation happened barely two weeks before the next routine tests. At that same time Ed started having a low fever each afternoon and evening. Two friends of ours had just had the flu, passing it off to each other. Their flu symptoms were identical to Ed’s, and we had both been exposed. We thought he’d gotten it too, and Ed congratulated me for not catching the bug.

Then on December 29, 2008—the day before our twenty-eighth wedding anniversary—the results of all the recent scans and tests turned up murky. We took the news like troopers or, at least, outwardly so. Ed said there was no sense worrying until we knew more. I didn’t tell him that I’d never been able to pull that off—not worrying. My imagination was too active.

More tests were scheduled.

2. The Big Blue Envelope

In mid-January we flew to Honolulu for a PET scan, a diagnostic tool not available on Maui. A PET scan, or Positron Emission Tomography scan, shows benign and malignant growth including very small tumors, and detects disease that has moved in the body from one location to another. All of this and more was explained to us.

In the two weeks between the diagnosis and our trip to Honolulu for the PET scan, we all celebrated my youngest daughter Peg’s fiftieth birthday. The whole family had gathered on Maui for a party where Kat lived, a mile up the hill from Ed and me. Poor Peg—she’d looked forward to the event and it should have been her big day. The reality of the murky scans had a quicksand effect on all of us—stick your toes into it and feel it pull you down. We all did our best, especially Ed, although he looked sick and miserable throughout the evening of the party. Uncharacteristically early, he told me he needed to go home, and right away I was driving us back down the hill to our house. I didn’t know it then, but the instant the door closed behind us everyone there was talking about Ed, and how awful and sick he seemed, and what might be happening.

Although our trip to Honolulu was a quick forty-minute hop between islands and was only for one day, flying inter-island after September 11 was not the breeze it had been. Ed was exhausted from the flight before we even checked in for the PET scan. The whole procedure was extremely stressful for Ed—the bizarre routine of being injected with radioactive dye by people whose gloves and lead-lined aprons guard them from what was going directly into Ed’s veins.

After the injection and before the scan, he had to sit still for forty-five minutes in a semi-dark room with no book, radio, TV, or any other distraction. Thank God I can meditate, he said afterwards, referring to the years he’d spent as a young man practicing Transcendental Meditation.

The procedure took two hours. My oldest daughter Terry was with us. She and I sat outside the office on a shaded bench. We spoke of the different scenarios of how the future might play out. Right from the start, we were both admitting the likelihood that Ed’s melanoma had come back and could be fatal. As we talked my throat kept tightening and my eyes swam with tears, and I always forced myself back into control. Terry said, Just remember that if you need me, whenever it is and for however long, I’ll be there.

Finally Ed was through. As he checked out at the desk he was handed a big blue envelope containing the large film plates from the scan, plus a written report. Ed was told to give the envelope to his oncologist but not to read it first. We took a taxi to the airport and a plane to Maui. Back at home, Ed dropped the envelope on the kitchen table, and there it lay.

That table was small and round, the envelope oversized and blue. Aside from a green placemat at the center of the table and a pile of shells on the placemat, the surface was unusually clear and for some reason it stayed that way for the next couple of days. Had it been covered with its normal smear of newspapers and mail, the blue envelope might not have stretched out its tentacles at me every time I walked by. Dutifully, I did not sneak a look.

A day passed. We were in the waiting zone before the appointment with the oncologist. He would then review the contents of the envelope. On the evening before the appointment, from his usual corner of the couch with the white cat Moku purring on his lap, Ed asked me if I’d gone online and looked up melanoma. I hadn’t. I didn’t dare, but didn’t want to say so, and anyway something about his voice triggered me into asking an instant question: Did you read the report in the blue envelope?

Yes. Of course.

A pause. A terrible sense of what I had to do. Well, then, I’ll read it too.

— —

I pulled out a chair and sat at the table, opened the envelope, and read every word. Boiled down, changed into lay-speak, the report said Ed had shadows of masses in his lungs and liver, plus tumors in bones along his shoulders, down his spine, around his pelvis, and an especially large one in his right femur. My image as I read was of a classroom skeleton, bones bulging from lumps. One searing sentence in the report said the tumors were too numerous to count.

Let me digress here to say that I was at ease with the now-­common swear words that were taboo when I grew up. But I was offended and put off by the emergence of the term It sucks. I disliked everything about it—to me it was vulgar, unattractive, and not an expression I would ever use.

There at the kitchen table I put the papers back in the envelope. Ed was in the living room. I had to go in and say something to him. What in the world does someone say at such a time? I didn’t even take a moment to absorb what I had just read.

I couldn’t delay. I couldn’t leave Ed in there petting his cat, knowing what I was reading and waiting for my reaction. It was a huge moment in our lives. The report in the envelope told me my husband was more than likely going to die of cancer, and maybe soon. It told me that much difficulty lay directly ahead. Back in the living room I sat down facing Ed. I still didn’t know how to handle the situation, but I opened my mouth and, to my complete surprise, I said, Well, that really sucks.

Startled, Ed burst out laughing and then so did I. We laughed and looked at each other and shook our heads and had tears in our eyes, all at the same time. Neither of us knew that in the next months the words That sucks, or "That really sucks," would become code for expressing the inexpressible, would lighten a bleak mood, and would even sometimes trigger a precious, unexpected laugh.

— —

The next day, sobered and scared, Terry, Ed, and I went off to the appointment with the oncologist. Ed had asked all three of my daughters to read the contents of the envelope so that they would be as knowledgeable about everything as we were. At the check-in desk we handed over the big blue envelope. Standing at the desk waiting, we talked for a minute about chemotherapy, wondering if that was the next step. But I don’t approve, Ed said in his humorous way. He didn’t mean he would choose not to do chemo, he meant the whole business of having melanoma was a lousy idea.

We sat in Dr. Adler’s examining room with Terry. She and Ed and I listened while the doctor told us what we