Stage 3: Upheaval
A hallmark of the new grief is its length. As the treatment and caregiving processes stretch onward, pressures build, both within patients and the family members who love them. Consider, for example, the experience of Ellen, a 49-year-old woman who was diagnosed with Stage 4 breast cancer:
“In 2003, I started chemo and simultaneous radiation—a horrid combination. The chemo left me bald, nauseous, with no appetite, dry mouth, neuropathy, and incredible fatigue. No one told me that without eyelashes, dust and dirt fly into your eyes—or that my nose would run constantly and often bleed. The radiation was worse. For three days, I lived in a Star Wars movie, with beams of light shooting across a cold room where I was half-naked, forced into uncomfortable positions, and told not to move while strangers drew lines on my chest with markers and placed little black dots, like tiny targets, on my skin. And this was just the prep work.
“The physiologists taking measurements had a tough job aiming their radiation at a malignant node under the chest bone while avoiding my heart and working around my implants. The radiation itself was okay for a while, but then my skin started to burn. I was then told to go to the hospital burn unit for ‘burn baths’ until I healed enough to continue the treatments. That was my entry into the world of metastases.”
Following these treatments, Ellen’s doctor put her on a two-drug combo that’s kept her stable for five years. “Stable is good. Actually, stable is great!” she wrote me. But the process goes on. As she recently wrote, after starting yet another treatment, “This recent cancer treatment is very hard on me . . . and I suspect the remaining chemos won’t be much different. I want to spend the years I have left on a healing spiritual quest. . . . I have bone metastases, and massage is not advised due to pressure on the bones that are already weakened. I have lymphedema in my arms and chest, which leaves just my legs, feet, back, face, and ears for acupuncture needles. In the earlier stages, I did get relief from acupuncture . . . not so much now.” Ellen has taken up meditation, and says that this seems to calm her and lessen her physical discomfort.
The stress of the disease and its treatment for the patient is often apparent to others, as in the case of a cancer patient who loses her hair and becomes visibly frail; however, the impact for the caregiver may be invisible to the outside world. George, whose spouse had been diagnosed with ovarian cancer, remembers the chemo experience as so dramatically up-and-down that he never quite got his bearings. “On good days, Claire was still vibrant and energetic, able to get herself and the kids dressed while I served up breakfast, and then ready to help load the kids into the car for their ride to school as we both headed off to work,” he recalled. “A good day for me was pretty much a replica of the way life had been before the diagnosis. Sometimes I’d allow myself to fantasize that everything was fine.”
But on bad days, he was slapped back into reality. “Some days—typically after a chemo treatment—Claire was totally drained. On the evenings after a treatment, I tried to make her comfortable, see to it that the kids were fed and bathed, and try to strike a balance between allowing them to hang out with their mom and not tiring her too much. I usually prepared a separate dinner for Claire and me—something simple like soup and bread, since her appetite on those nights usually wasn’t great.” By the end of the day, George often felt exhausted by near-single parenting, caring for Claire, and a grinding worry about whether his wife would survive.
This period of upheaval was when Claire gradually lost her hair—“all of her hair, including eyelashes, eyebrows, the works,” said George. “For me, that was frightening, because it made Claire look so vulnerable, and reminded me that she really could die.” Fortunately, there were a few moments of comic relief. “I have a vivid memory of going with Claire to a special salon to pick out a wig. I watched her try on variations from platinum blonde curls to Gothic jet black, and then turn to me for my opinion, her neck swiveling around like a runway model’s. We cracked up the whole time.”
George kept his darker feelings to himself. He had friends and colleagues he might have turned to, but didn’t. “For quite a while, I’d been in the habit of meeting a couple of guy friends for wings and beers at a local pub every two weeks,” he said. “But once Claire got sick, I found myself wanting to stay close to home. I wasn’t in the habit of sharing anything serious with these guys, anyway.” He paused, considering. “It’s not that people weren’t sympathetic. Most people I knew would ask how things were going—but mostly in terms of Claire’s treatments. Rarely was I asked how I was doing, though occasionally, someone would ask about the kids.”
George was grateful that, throughout the ordeal, his relationship with Claire remained strong. “We didn’t talk about her illness at length, but we felt that we were in it together, regardless of the outcome,” said George. “We still laughed together, watched the news together before going to bed, and did family things on weekends. We were still intimate. But as much as we were bonded as a couple, on another level, I felt completely alone.”
Before our interview, George had never told anyone about his experience of being with Claire before surgery. As she lay in a bed in the pre-op area, George by her side, her surgeon strode toward them. He was a handsome, energetic man, who’d been dressed in Armani during their two office visits. Now he was wearing scrubs, and the surgery suddenly became real. “When he pulled up a stool next to Claire and made eye contact with her, I saw her lips start to tremble,” George said. “The surgeon must have seen it, too, because he reached out and took her hand. ‘This is going to go just fine,’ he told her. Claire nodded, but her eyes welled with tears. It was all I could do to keep from breaking down.”
The surgery was deemed successful, marking the end of the first stage of upheaval that would go on and on. At each juncture—surgery, chemo, follow-up testing—there’d be more declarations of success. Each time, Claire and George experienced great relief, followed by renewed wariness. “We both know that ‘success’ is, in fact, only a statistical statement,” said George. “I’m aware that our family is among the lucky ones. Claire has now been in remission for nearly two years. But ovarian cancer is aggressive. For both of us, the fear of relapse—and possible death—lurks in the back of our consciousness. I’ve come to think of Claire as being ‘a survivor, so far.’”