In Sickness and in Health

How one couple found their way through the rough waters of a cancer diagnosis and the first year that followed

By JoEllen Collins

This past May 27, on their fifth anniversary, Erika Anderson Embley and her husband Mike sat in their Tiburon, California, backyard enjoying a classic early summer evening. They watched their dogs spin circles on the lawn and smelled the fragrance from over 30 rose bushes in their first bloom that mixed with soft salt air from San Francisco Bay. While this quiet moment might not be notable for most people, Erika recalls that it was as close to bliss as she could imagine. She had just brought Mike home from round one of his chemo treatment and, although he was weak, they treasured the sweet respite from months of trauma.

Appreciating occasions like these is something that Erika has recently come to understand. It was in the summer of 2005 that Mike—a witty and robust man in his forties, working as a policeman in Sausalito—experienced severe back pain. The couple went to the hospital, where Mike was diagnosed with costochondritis (a tear in the connective tissue to his breastbone and sternum)—the result of an injury incurred in a police training class—and was then sent home. Then, on January 27, 2006, Mike was rushed to the hospital again, this time with a pulmonary embolism that was found to span both lungs. It was during this visit that doctors discovered many lesions on his rib cage, along with a malignant mass. Mike’s earlier back pain had in fact been an early sign of Stage III multiple myeloma—cancer that had now spread since the earlier misdiagnosis to his shoulder, ribcage, spinal column, and leg.

Lessons in Caregiving

Thrust into the role of caregiver, Erika discovered quickly that life goes on in spite of the cocoon that a patient and loved ones often experience. Blows are occasionally delivered that, even in the absence of a loved one’s illness, are tough to handle. In Erika’s case this realization came when she had to put the couple’s dog, Maddie, her beloved pet of 14 years, to sleep two days after Mike was rushed to the hospital with the embolism. A week later, on a cold, rainy, February Friday, Erika returned home from the hospital by herself with the news of Mike’s cancer diagnosis. Moments later she answered the door to a messenger who handed her Maddie’s ashes.

There would be many difficult lessons over the next year, as Erika learned what it would mean to care for her husband and as the couple learned together to manage Mike’s illness. Some came early and were harder to bear than others. Realizing that some of their friends—out of fear of saying the wrong thing, being uncomfortable in the presence of pain, or, perhaps, just afraid of confronting such a horrible event in the life of a relatively young man—would not come through to offer help and comfort was especially tough to confront.

But another lesson—this one in love—made the others easier to bear. Friends and family who did step forward formed a true platoon of support, and it is to their love that Erika and Mike credit their survival thus far. This group cooked countless meals, played with and fed their remaining dog, Caboose, sent Mike numerous notes and e-mails, and kept his spirits high.  One friend set up a spread sheet to monitor the confusing tabletop drugstore of Mike’s medicines, and another created a filing system to organize the mountain of medical paperwork. A work colleague found a way to communicate with Mike during an isolation period:  she stood in their yard and flashed cards of greeting. In preparation for Mike’s lengthy and difficult second hospital stay for his autologus stem-cell transplant, Erika solicited friends, colleagues, and family to contribute well-wishes to a large banner for Mike’s room. As he is an avid Harley-Davidson enthusiast, Mike’s banner headline read “LIVE TO RIDE,” his cancer-fighting motto. It was so covered in pictures, jokes, and messages that Erika had to create two banners to accommodate the decorations.

There were also more practical lessons in the technicalities of the healthcare system and the new language of cancer and caregiving that Erika and Mike would have to learn as Mike’s treatment progressed. Initially treated with radiation and drugs to dissolve the blood clot and help him with the pain, Mike’s skeletal system was at that point already damaged severely by the cancer. By early May Mike transferred to the University of California at San Francisco medical center (UCSF), where he began receiving more aggressive treatment. It was after his transfer that Mike and Erika learned from the doctors at UCSF that much of the treatment he had been undergoing in the previous months had not been appropriate: it was not sufficiently aggressive and sometimes even incorrect. Still, by mid June UCSF doctors were able to declare Mike in “near complete remission,” enabling him to be a candidate for stem cell transplant. Though the learning curve was steep, they ultimately found the care they needed.

Managing New Challenges and New Priorities

With Mike’s diagnosis and the treatment that followed, Erika’s world shifted in every way. Priorities were rearranged, and the changes meant adjusting to a new order and a new way of life. Almost right away the couple decided that Erika would quit her job in order to care for Mike. Her work designing gardens and artistic displays for events was put on hold. The unanticipated result, for Erika, was the loss of camaraderie and the distraction a workplace provides. Suddenly she had more time for introspection and fearsome thoughts about Mike’s illness. There were times when Erika just wanted to talk about anything but cancer and illness, and in her new world these opportunities were few.

The anger that surfaced for Erika during this time became an unexpected source of pain that she also had to find a way to cope with—something she recognized as natural but was still difficult to handle for one who had always sought to please others. It would bubble up when she most wanted to stifle it. She was angry because doctors hadn’t diagnosed Mike’s cancer during his first visit to the doctor a year ago—even rejecting the idea of a bone biopsy—when the progression of the disease might have been avoided.  She often wanted to raise a fist at the fact that her vital and beloved husband had somehow been dealt this card. Ultimately, she was able to put aside her anger to use all of her positive energy to help her husband, but managing the emotional turmoil that the situation provoked was often a challenge.

Coping As a Couple

Mike’s legendary sense of humor has helped the couple deal with the more distressing aspects of his illness and is never far from their story.  Even the way they first met, at a Fourth of July picnic in 1998, provides rich fodder for his wit.  Mike says their meeting should have come about through a speeding ticket (and that Erika should be given a weekly summons), but instead it was after policemen friends of his got Erika’s name and other details wrong while attempting to fix him up with “the girl from the picnic”—in what Mike claims was “classic cop fashion”—that he was eventually able to find her.  By their second date, Erika knew this was the man she would marry.

Other examples of Mike’s humor, and the couple’s ability to laugh together, crop up time and again as they tell their story. At one point during his treatment, Mike—now bald from chemotherapy treatments and trailing three separate lines from a port in his neck—e-mailed friends a photo of himself and joked that he was “going for the shaved ‘serial killer’ look,particularly funny given his occupation.By June 17 Erika was able to write, “I am taking a poll: does Mike look like Kojak, Daddy Warbucks, or that guy who lives next door about whom you will one day say to the news reporter, Oh, he was such a nice man, kept his front yard tidy and never talked to anyone.”  They even laugh over the drive home from the hospital when Mike, whose hair was just beginning to fall out, stuck his head out the car window like any joyriding dog to let his hair “fly away”—and it did! Another time, Erika recalls her heavily sedated husband watching the Rolling Stones during the televised Super Bowl halftime show and weakly slurring the words, “Can’t get no satisfaction.”  It was their shared sense of gallows humor that often kept them going.

While their humor has helped them through many rough spaces, both Mike and Erika have been plagued by difficult choices regarding his care, doctors, and facilities, and both have also faced their own, unique challenges and created their own coping strategies along the way. In spite of a saving sense of humor, Mike has had many discouraging episodes. His optimistic nature has been challenged by financial concerns, a total lack of energy, fears for the future—including his career as a policeman—and, in June, news that his mother had suffered a heart attack. For Erika, watching Mike bear these emotional and psychological burdens along with his physical pain has been incredibly hard. She has been forced to find her own coping mechanisms—drawing on the tender care of her supportive parents, leaning on friends, and doing the daily things she can to help Mike, like devising the perfect smoothie to satisfy his cravings and sending news of his condition to family and friends. And then there are the rare days when she just has to get into her car and cry.

Among the moments of despair, Erika says, the moments of clarity and perspective shine brightly. Perhaps one of the most significant took place while Mike was still in the hospital in San Francisco last summer. On the Fourth of July, Mike and Erika joined a young patient on the 11th floor of the hospital to watch the fireworks display. The young boy, dressed in Superman pajamas, was also ill with cancer. Erika looked at the two patients and railed inside at the unfairness dealt to these “boys.” But despite the unfairness, the moment provided one of those opportunities to step back. Transported for a while, they were united in watching a magical display out on the Bay, sharing one of the rare moments when they could just “be” for a brief time.

Moving Forward

By mid-July Mike had finished the most brutal aspects of his treatment, including his stem cell transplant, and went home to recover his strength to face the next set of treatments, which were dependent on whether the transplant was successful. With the good news that it had in fact been a success, Mike went on to take part in a blind drug trial program for Revlimid®, a medication just approved by the FDA, which could prevent the multiple myeloma from returning.  In late September UCSF doctors declared Mike to be “in good remission.”Though he faced the setback of discovering an additional spinal fracture during this time, the hope is that as his body heals and the bones regenerate, these fractures and bone instabilities will cure and strengthen.Inthe meantime, Erika and Mike are planning on more laughter and on recreating the better times they have shared. They may enjoy many more hours in their garden, smelling the new-mown grass and watching Caboose frolic with another dog that they have adopted.  Knowing Erika’s penchant for rescuing strays, they found another “perfect” critter, Asta.

Whatever they face, Erika is emboldened by the knowledge that they already have survived more than they thought they could bear. Most of all, the bonds of their love have only been strengthened by her husband’s spirit, humor, and courage and by Mike’s even deeper connection to his wife.  In an e-mail he wrote, “Erika has been an enormous trooper…and has made great sacrifices without complaint.” This is one couple who, despite the struggle of the past year, or perhaps more so because of it, are both aware of the gifts they have in each other.