The last blog entry ended with Dr. Marie Mulligan saying the following, “You are not really the type I associate with this kind of cancer – it tends to appear in women with a lot of stress.”
She does not know that during the several years preceding my diagnosis, my brothers and I had been taking care of my parents whose health and well being were rapidly declining.
It all started when my father called. “Your mother is leaving me.”
“Dad, what are you talking about – after all these years?”
“No, no that’s not what I mean. I dropped her at the doctor’s office the other day and she went to the wrong clinic. She doesn’t know where she is.” I hop on a plane immediately and when I get to my parents’ house, no one answers when I ring the bell. I go in and discover my father trying to pull my mother out of bed. She has projectile vomiting. The bedroom reeks of urine. I start to call an ambulance. “No, we don’t need one,” says my father and I realize the depth of his denial. At the hospital, they discover Mom has gone septic from a urinary tract infection (UTI). She recovers but begins a steady cognitive decline. After much discussion, my father agrees to sell the house and move into assisted living to be near us. I make repeated trips back and forth across the country, organize 3 estate sales and watch my mother shrug her shoulders as people leave with her treasured collections of copper pots, blown glass, African masks, and beads.
One day, back at home, I notice that I have a rash covering my entire body. The doctor says “I don’t know what it is, we can take a biopsy.” The biopsy comes back negative. “It’s some kind of auto-immune problem. “Could it be caused by stress? I ask. “No,” he says, “definitely not.” My friend Dr. Beverley Kane, says “The skin is the first line of defense.” She suggests that I contact another forward thinking scientist who recommends reading, The Genie in Your Genes.
It is about epigenetics – the idea that there are environmental forces acting upon genes that cause them to mutate, to manifest or not manifest. “Environment” can mean the emotional state of the person, which in turn causes chemical changes in the body, which in turn effect genetic behavior and disease. The book sites studies with couples upon whom small wounds are inflicted – scratches. One set of couples is exposed to stress, another not. The wounds of the stressed couple heal more slowly than the wounds of the unstressed couple. So can one extrapolate from this that if a cell’s genes have a mutant cancer sequence, this can be suppressed until some change in the cell’s chemical contents enable the cancer to manifest? My rash remains for over a year. It disappears after we get my parents settled into assisted living.
My brothers and I still have plenty of stress, trying to manage my parents’ care. My mother calls her living space “this lousy apartment.” One day she asks, “Why don’t you have a baby for me to play with?” She forgets that I am well past menopause. There are so many ways in which I have failed her expectations.
Her health is fragile. She gets one UTI after another. We ask the doctor how we can prevent these infections from recurring. He stands at the foot of her bed and says, “She has to die of something.” The first neurologist she sees suggests looking into new medications for Alzheimer’s. “What are some?” I ask. “Look it up on the internet,” he says.
At the assisted living facility, a compassionate but disorganized health care manager engages in ongoing conflicts with the owners. We look for an alternatives, but my father has dug in. He doesn’t want to move, doesn’t think anywhere else will be an improvement. Two years into my parents’ stay, he has a stroke. As a result, he cannot swallow properly, his speech is slurred, but he remains mentally acute. Within a short time he can walk and speak more clearly. His swallowing never improves and there is a danger that he will inhale food into his lungs and die of pneumonia. He has a stomach tube inserted for nourishment. He hates the stomach tube, hates having an aid administer the feeding. The more he loses control over personal tasks, the grumpier he gets. He practices his own private form of Judaism. I give him Jeanne and William Steig’s book, “The Old Testament Made Easy,” thinking it will make him laugh. Instead he complains, “There’s a mistake. Steig drew Adam with a belly button.”
We visit another neurologist to get to the bottom of my mother’s cognitive wasting. “She is losing tissue,” he says, and points to dark smudges on her brain scan. She slips further and further away, stops talking, withdraws from my father. One day I bring her Chinese food for lunch. She eats it, falls asleep, awakens for dinner. She sits with other barely cognitive patients. Suddenly her head drops to the side.
We rush her to the hospital. A nurse slaps her hand and calls her, “Shirley, Shirley!” She opens her round blue eyes and smiles, lifts her hand to the nurses cheek and strokes it. I want it to be my cheek, I want to be touched by her, seen by her one last time. I am on the wrong side of the bed; I wouldn’t have the nerve to disturb her sleep. The nurse smiles back. Mom’s hand drops down. She closes her eyes.
The doctor says “We’ll keep her on fluids for three days. Sometimes people come back. If not, you can withdraw fluids and she will die within two weeks.” She never comes back. We decide to let our mother die of thirst and hunger. We call hospice and sit vigil. We give her oxygen to ease her breathing; we change her fentanol patches. If she seems restless, we put morphine under her tongue. We swab her gums with a soft lollipop-like green sponge on a stick, to moisten her mouth. How do you know whether you are adequately controlling the pain of someone who has fallen through the black holes in her brain? The hospice nurse tells us the signs to watch for. “Her feet will turn blue, her breathing will become sparse and rough, she will exhale and die.” On the ninth day we surround her: my father, my two brothers, the hospice nurse, and I. I count her breaths per minute. Her toes are blue, her breath a harsh cackle. We tell her how much we love her and reassure her that it is okay to let go. She inhales and dies.
My father falls into despair. He decides to have his stomach tube, the one good source of nourishment removed. He becomes emaciated and weak. One day I come into his room and he is folded chest to knees in his wheel chair, clutching tax papers in his left hand. He looks dead. I put my hand on his back, “Dad, Dad?” He sits up. “Dad, are you okay? I wish you would let someone else do your taxes.” He is a numbers man, a statistician. He is stubborn about doing his own taxes. “No, I’m not okay. The taxes aren’t the problem,” he says. “It’s my body. I’m dying.” The next day my brother takes him to the doctor, who encourages him to eat more. He dies in his bathroom that afternoon, alone, after my brother leaves. By the time I get there, my brothers have laid him out on his narrow bed.
He lies, arms and legs akimbo, his position evocative.
No Holy Mother holds him aloft. A fierce believer in the unity of G-d, my father would have been horrified that the Pieta even crossed my mind. He was also fiercely pragmatic, “Once you are dead, you are dead, kaput, finished, nothing.”
Jews do not believe in preserving corpses with embalming fluids or elaborate coffins. They return to earth in a plain wooden box. My parents went even further. They donated their bodies to science. Each was wheeled into a non-descript van, driven to a morgue, then transported to a medical school. I have no idea what happened to them there, what happened to them when the students were finished with them. “There isn’t a grave, an urn of ashes,” says my brother, “just nothing .”
A month later we discover that someone walked by my dead father, into his room, stole his credit card and used it to buy gas and dog food.
I have to wonder whether my stress caused the skin rash, whether it allowed my body’s chemicals to get so out of balance that it triggered the cancer. Who can know to what degree we influence our own health. My surgeon believes I can have no influence on whether or not the cancer returns. He says this as though it should be a relief to me. I settle on something in between – try not to worry about the cancer returning and buy all the vegetables, cook books and algae that Dr. Mulligan recommends – and especially the Maitaki mushrooms to prepare for the radiation.