Sunday, September 2, 2012
My cousin Linda was born in 1946 with a serious heart murmur. “She’ll be lucky to survive a month,’ her doctors told my Aunt Davida and Uncle Kent. When she not only survived but thrived, the experts shook their heads. “It will be a miracle if she makes it out of childhood, though,” they said, “and she will never be able live an active life.”
In middle school, she made cheerleader. Of course she did — she was a gorgeous brunette with long, thick, lustrous hair, a beautiful face, luminous brown eyes, a curvaceous figure, and a calm personality with mischief underneath. Her heart murmur was still there, but apparently it didn’t know she wasn’t supposed to cheer.
Once she got to high school (where she was cheerleader again), and the crop of pretty freshman girls were reviewed by the senior boys, the drum major and Big Man on Campus, Leonard, asked her for a date on a $5 bet from a buddy. Leonard and Linda fell in love, but he went off to Germany with the Army, and she went off to college.
She was a cheerleader in college, too. BaBum, BaBum, BaBum, said her heart — murmur and all — ticking along, as she herself broke boys’ hearts right, left and center. The Big Man on That Campus fell for her hard, and she married him while Leonard was in Germany.
Time passed. When Leonard returned from military service and learned that her marriage hadn’t worked out, he proposed, and they got married right away.
“She’ll never be able to have children because of her heart,” the doctors had said all along, so she went ahead then and had three beautiful kids by natural childbirth, a son, Perry, a daughter, Wendy, and second son, Eric. All are superstars, just like her. Their family lived the dream — all the kids in sports, good students, their beautiful home the center of action and activity in the neighborhood. When my family and I came to town, we spent a lot of time at their house, and my daughters were in awe of their older cousins, who always included them in activities like driving out of town to procure fireworks on the Fourth of July and shooting them off in front of the house!
Years went on, and Linda’s mother, my Aunt Davida, developed breast cancer, had a radical mastectomy, and herself beat the odds, living without recurrence for over 30 years. At some point after her mother’s surgery, Linda called me long distance. “I’ve never had a mammogram, but I think I’d better have one, don’t you?” “Yes, I think for sure you should, but I’m not worried at all. I know they’re not going to find anything,” I said. “I don’t think so either,” she said.
But they found stage 2 breast cancer that had spread to a few of her lymph nodes. Her surgery was followed by chemotherapy and radiation, and she did a lot of research on alternative medicine. She combined her medical treatment with about 45 vitamin and herb pills per day. She walked three miles a day throughout her treatment, drank about a gallon of water daily, and did visualizations designed by medical intuitive and mystic, Caroline Myss. She meditated. She prayed, and so did I and a lot of other people.
Although the chemotherapy was strong and toxic enough to require a port implant in her chest, she never had a day of fatigue or sickness during her treatment and credited the holistic medicines she took alongside her chemo for her strength and resilience. One day I drove into our hometown in East Tennessee from Dallas and went looking for her. She was at the local park, in a pretty bold blonde wig, hoofing it around the track in the heat of the day. Later she told me that on another day which was supposed to be her worst after a chemo drip, she planted flowers in her yard for eight hours and never felt tired. She had to be doing something right, because the blood count that usually drops during chemo stayed up and strong to the point that her oncologist, Dr. G., said, “Hmmm, I don’t think I’m poisoning you enough. Your blood looks too good.” “Very funny,” she replied. “Well, I don’t really believe in all this vitamin and herb stuff,” he said, “but whatever you’re doing, keep on doing it. Another patient on exactly the same regimen as yours is very ill and her numbers are dangerously low.”
Then came the deadly infection. She went in for a chemotherapy drip, and a nurse administering it failed to wash her hands after touching a bathroom door knob. A hard-to-identify and treatment-resistant bacterium entered Linda’s bloodstream. She was hospitalized, and, to keep from going crazy, continued her walking program in the hospital halls, repeatedly making a loop that she measured out to give her the mileage she needed. Finally the hospital lab identified the germ: it was rare — only nineteen people had ever contracted it… none had ever survived. To that point, it was 100% fatal.
Undaunted and unafraid, she kept walking the hospital halls and made the hospital her home, decorating her room and settling in, as staff in the hospital lab fought against the ‘bug’ in a petri dish, trying every combination of antibiotics they could think of to kill it. Five weeks passed: the germ didn’t die. But neither did my cousin. Befriended by a lab technician who visited her in her room, he said, “I’m not giving up until I find something that works.” He did. She lived, the first survivor of that germ.
She sailed past her five-year mark cancer free, and her ten-year anniversary was approaching.
One summer we had a business together in a beach mall in Hilton Head Island, South Carolina, which was the place on earth that she loved most. Just as my daughters and I got onto the island, one from college and one from high school, and moved into her condominium with her for the summer, she made a trip to Knoxville for her annual visit to her oncologist Dr. G. She called me from there. “Bad news,” she said, “my tumor marker is up, and there are lesions on my femur and ribs.”
She came back to the island, and we discussed it. “I’m not taking the chemo drugs right now,” she said. “Dr. G. has given me some time to make up my mind. I may take them later, but I’m going to try alternatives first.”
She found a kinesiologist in North Carolina, set up an appointment to see him, and drove up there the next week while my girls and I ran the business. He put her on a strict diet, took her off some of her vitamins and put her on others. “Ugh,” she said, when she got back, “I have to give up coffee, sugar, and alcohol.” “I’ll be happy to consume your share of those things for you, especially desserts,” I said helpfully.
When she went for her check back with Dr. G. in a few weeks, he couldn’t figure it out. “I don’t get it,” he said, “your tumor marker is down.” She went in for a bone biopsy, and the radiologist turned out to be an old boyfriend. “Would you have this biopsy if you were me?” she asked, and added, “off the record.” “It could cause a fracture,” he said, “and, if you see a horse, you call it a horse.” “Meaning?” she asked. “I think it’s malignancy,” he said. She left without the biopsy.
She was strict about the diet, and went back to the North Carolina kinesiologist for homeopathic injections, which she said were painful. Her tumor marker stayed down, and later, on the next scan, many of the bone lesions seemed inexplicably to have receded.
After that summer, our communication was scattered but consistent. Letters, pictures, phone calls, visits to Knoxville when my father and stepmother died and for her mother’s funeral.
Several years ago, she reported that her tumor marker was up again and she was taking a mild chemotherapy drug for a sort of maintenance but it was not making her ill. Then she stopped reporting on her health, and for some reason I stopped asking. In my mind, things had just stayed right there — a mild maintenance treatment was keeping her illness at bay. I made an alliance with denial and silence, and she did not intrude upon it with bad news.
Last week I was in Knoxville and called her as soon as I got to town. I had family business to transact and went about it for a few days, then called again and left a message several days before I was to leave. “Let’s have lunch or dinner and catch up,” I said on the voice mail. When she didn’t respond, I told my out-of-state daughters by phone, “I hope she just didn’t get the message and it’s not that she’s sick or something.”
Every day that week I ate lunch at restaurants where she and I had always eaten together. They were close to my hotel and were in the neighborhood where Linda, Leonard and the kids had always lived. One of the restaurants is owned by a chef who went to culinary school and had roomed with their son, Perry, also a chef. I spoke with him about the family. “Tell the whole crew hello,” he said. I drove by the houses where my family and I had visited Linda’s family so many times and thought a lot about what good times we’d had there.
Finally, I hadn’t heard from her and had to leave town without seeing her. As I pulled out of Knoxville, I felt somehow unfinished, but it was time to get on the road, and I thought, “When you grow up somewhere, you are never finished with that place.” I drove back toward Dallas, stopping in Memphis to stay with a friend.
At bedtime my first night in Memphis, I got a message from Wendy. “Karen, I received the message you left for mom. Sorry to inform you that Mom passed away this evening at home surrounded by family. I’ll let you know funeral arrangements once they’re made. The cancer had spread all over her body, and it was finally in her liver. Call me tomorrow, and I can give you more details. We love you, Wendy”
Who of us hasn’t had loved ones die of this illness? Both my mother and stepmother died of it, and I sat with them during their passing. But here are some particular things Wendy and Leonard shared with me by phone over the past two days:
A month ago, Wendy tells me, Dr. G., Linda’s oncologist of 22 years, came into the room where she waited for test results. He was wiping tears from his eyes. “The chemotherapy isn’t working on the disease in your liver,” he told her. “The treatment is going to kill you before the cancer does, and we should stop it.” They did.
“There were a couple of funny things,” Leonard said. “During the past two weeks when she wasn’t able to get up, I’d go in to check on her while she was sleeping. One day she woke up, looked up at me and said, ‘Every time I open my eyes, you’re standing there staring at me. Why is that?’”
“Then, a few days before she died, she woke up and asked me pointedly, ‘Am I dead yet?’”
Her wicked humor didn’t abate.
“Over the years,” Wendy said, “they’ve written mom off so many times and said, ‘OK, this is it.’ ‘Go to hell,’ she’d tell them.’” Wendy and I laughed at this, because there’s no anecdote more typical of Linda’s fighting spirit.
I find that I am angry alongside my tremendous sadness. I know anger is a stage of grief, but it feels more personal than something that is merely part of a predictable pattern — these things always do. I’m looking for the victory in this outcome, and I’m having difficulty finding it. Victory is something we’ve all come to expect of Linda, and, though her battle is victorious beyond measure, I so wanted her not to suffer as she did and to be well.
But Grace… there is Grace all through it… in the fact that I took this trip to Knoxville unexpectedly early, and it was a trip I’d been putting off for a while. Circumstances beyond my control compelled the timing of the trip — I’d been planning to go two weeks later. My older daughter said to me on the phone after we got the news of Linda’s death, “The timing is just very strange. I’ve got to figure it out. But one thing we know for sure: a lesson in this is ‘If not now, when?’”
All last week, after calling Linda and not getting a reply, while I spent part of every day in the suburb where we’d gone to high school, where her family had lived, in places we’d always gone together… she was in my thoughts almost all the time. I kept wondering if she was in town and thought, “Well, maybe she’s in Hilton Head,” but in fact, all week long, I was five minutes from where she lay dying. If I had known, I would have been by her side. Leonard said to me after, “Karen, I think it’s good for your own sake that you weren’t.”
Then last night, I got a note from a good friend here in Dallas, and there was something in it, esoteric and inexplicable as it sounds, that I hadn’t been able to put together, but that pierced my heart as the truth: the note said, “maybe somehow she wanted you nearby even if the words were unspoken between you.”