Janette had been quiet for some time. Then on Sunday, February 12, 2017, Janice woke up with a bad headache. That headache was Janette’s calling card.
Sunday, Janice said, had been a really bad day. The next day she woke up feeling no better and got frustrated, declaring she would just ignore it, because she had “too many things to do.” After breakfast, she went out to move the trash bins down to the curb for pick-up day.
We had three bins, one for recycling, one for compost, and one for trash— sort of like the three bears— a papa bin, a mama bin and a baby bin. Trash pick-up was every Tuesday. We always moved them down the day before, because the trucks came early on pick-up day. The bins can be quite heavy and awkward to move on our steep driveway.
Janette was playing one of her cruel tricks on us, making Janice think that she could carry on as if nothing had happened. When Janice tried to move the bins down to the curb, she fell and skinned her knee and couldn’t get up. She didn’t have her cell phone with her, so she couldn’t call me. I hadn’t heard her cries and didn’t know what was going on, because I was in the house. Fortunately, our neighbor was also moving his bins down and saw her and came to her assistance.
I helped Janice into the house, put a bandage on her knee and comforted her. Fortunately, I hadn’t left yet for the office, otherwise she would have been on her own, except that a neighbor happened to be around. What if she had had a more serious emergency, I wondered? Perhaps there would come a time when I would no longer be able to leave her at home alone.
This was an upsetting experience, for more reasons than one. The fall was like a fall from Grace. Not only had Janice injured herself, but the accident also served to remind her that she could no longer carry on as usual. She was going to have to cut back on some things, like people do when they get older, when they have to hire a gardener or someone to clean the house. Or like an elderly man who takes his car to the carwash instead of washing it himself.
Janette didn’t quit after this reminder, however. There was no stopping her now, it seemed. Janice was starting to get headaches and other symptoms, just as she had the previous year in the Fall, after her terminal diagnosis.
But she was still fighting it. She and Janette had declared war again.
Back in 2011, in our Age of Innocence, Janice also woke up one morning with a headache, but also with nausea. I rolled over in bed and looked at the illuminated dial of the clock. It was five in the morning.
“What’s the matter?” I said.
Janice was sitting up in bed and holding her head. “I have a headache,” she said. “I feel sick.”
I figured she had come down with the flu. Sleep still seemed like a possibility, until she got up and went into the bathroom, saying she might throw up. I listened for the sound of it. I heard some retching, then nothing, and waited for her to return. When she didn’t come back, I got worried and went in there to check on her and found her lying, curled up, on the floor.
“What are you doing?” I said, feeling bewildered.
Janice seemed disoriented and mumbled an answer. By now I knew something more serious had happened. I called the Kaiser Advice Nurse. The KAN is sort of like an ouch mouse, one of those reusable blue ice cubes that nestles in a cloth holder shaped like a mouse and is always there in the freezer. Similarly, the KAN is comforting and always available and invokes Mother.
But apparently, the KAN isn’t on duty at five AM. I couldn’t get through. I was on my own, the way I felt when Janice and I took our first-born home with us from the hospital; and I realized we would have to care for Daniel ourselves. For some reason, I hadn’t seen it coming.
Janice refused to get off the bathroom floor. She seemed to think she was back in bed.
“Leave me alone,” she said. “I just want to sleep.”
I knew I needed to get her to the ER. So I called 911.
Our daughter, Rebecca, was still living at home. I’d have to let her know where we were going, so I went into her room and woke her and tried to explain the situation. At the time, she was eighteen years old and had been admitted to UC Santa Cruz.
In a few minutes, I heard a siren and the sound of a big truck lumbering down the street. Janice was still lying on the floor in the bathroom, when I admitted a couple of big burly firemen in all their gear. Suddenly our bedroom, hall and bathroom seemed very small, like a doll’s house or a room in a fairy tale where giants live. The firemen looked at Janice lying on the floor and asked me if I still wanted the ambulance, which was on its way. Maybe their presence there helped. Janice roused herself long enough to ask what these men were doing in our house. I managed to get her back into the bed, where she insisted on going back to sleep. I decided to take her to the ER myself.
I dismissed the firemen and told them to cancel the ambulance.
“Maybe we should go to the ER,” I said, when the firemen had left, “just as a precaution.”
She didn’t answer but didn’t fight me, either.
“We can go there and be back in an hour,” I said, trying to make it sound easy. “Then you can sleep.”
I realized I was talking to a child now, one that I had to persuade to get up, get dressed— when the sun was just coming up— and go somewhere in the car. Janice finally sat up on the edge of the bed, facing the closet, but wouldn’t start dressing herself.
I had never dressed Janice before— undressed, maybe, when we were dating or messing around— but I never had to dress her. She wasn’t cooperating. The bra was the thing that intimidated me most. Guys sometimes can’t get it off, let along put it back on. I figured a girl would know better how to do it; so I tried to enlist Becky in the effort. But she was too clever by half.
“She’s your wife, not mine,” she said.
It was worth a try.
After some fumbling, I managed to get the bra on her. I struggled with her pants, shirt, socks and shoes. Janice helped a little, but not much. I dressed myself, grabbed Janice’s purse and my own things and helped Janice down the steps and into the car. I told Becky to meet us at the hospital. Kaiser was only a few blocks from our house, so it was a short drive.
At the ER, I explained the situation to a nurse and described Janice’s symptoms. The nurse then asked her a few simple questions.
“What year is it?”
Janice, holding her head, struggled to answer.
“19 . . . 84?”
The nurse looked at me knowingly. I already suspected that maybe Janice might have had a brain bleed. I’d read about such things.
“Who’s the president?” said the nurse.
“. . . Bill Nye?”
Janice had always liked scientist types.
The scans did in fact show a bleed. But, as we learned later, the blood in the image was masking the culprit behind it— Janette, or rather, in medical terms, a rather large meningioma on the left side of her head above her ear. The tumor had begun to bleed, causing the headache, the nausea and the disorientation. Janette had left her calling card.
But Janette wasn’t content with stationery. She had a voice of her own, as I soon discovered.
Janice had surgery at Kaiser, Redwood City, at the hospital’s neurosurgery unit. We had to wait for the bleeding to subside before the surgeon could operate. In the meantime, the surgeon had discovered the underlying meningioma; and Janette had begun speaking to us.
Janette had always had a voice that came out of Janice in the form of malapropisms. Before Janice’s first surgery, Janette sometimes took over Janice’s voice entirely and scrambled her speech. Janice thought she was saying something intelligible, but her thoughts came out in words that made no sense. The real Janice was in there somewhere, as if she had been kidnapped and was being held for ransom. Doctors call this phenomenon “anomia,” probably because they don’t know about Janette and have never met her, except in a clinical sense— in the form of tumors and such. But I knew Janette more intimately. Her game was to substitute one word for another and create mischief.
Janice’s family and some of our friends had rallied around. They were all in the hospital room at one time or another, during the week or so we waited until the day of surgery, and afterwards as she recovered. Janice didn’t know she wasn’t saying the right word. She just went right ahead and called a pineapple a “suitcase.” Our bafflement, as we tried to communicate with her in the hospital, was equally baffling to her. “Suitcase,” she’d say again, looking at us like we had lost our marbles— or suitcases, as she might have said.
“Suitcase” did duty for a lot of words. Why use twenty words when one will do? But she had a larger vocabulary, when she needed one. Doctors became “teachers,” “school” meant any location. “Secret” was a word for the tattoos on the arms of a friend who had come to visit— maybe because she knew that our friend used to conceal them at work, so he wouldn’t look like a lowlife. We didn’t always understand what she meant. We resorted at times to charades or the Indian sign language. But sometimes nothing worked except drawing a picture. On my way home one time to pick up some things for her at the house, she texted me while I was driving, to add to the list.
“Bring suitcase to tomession teach suitcase machine machine tomorrow. Thx.”
. . . You’re welcome.
The surgery was successful. The surgeon removed the tumor. Follow-up radiation destroyed the rest. Or so we thought and hoped. But Janette wasn’t through with us. In the Spring of 2011, she had only gone into hiding. She played this game of hide and seek with us for the next five years, until medicine gave up on us in 2016 after Janice’s third surgery. Janice’s speech improved for the most part. I didn’t need sign language any longer to communicate with her. I didn’t have to draw a picture. But as if jealous of her powers, Janette found a new way to torment us. Hearing loss . . ..
Janice Writes a Letter.
I am writing this on 9/10/16. I was told yesterday by Dr. T that I have more meningioma tumor growth in the location that received surgery most recently in March 2016. That area has also received cyber knife radiation. I believe this is the area that received additional surgery as well. After Dr. T discussed this issue with Dr. G and Dr. P, it was recommended that I try Avastin through infusion, as more surgery or radiation was not considered helpful after many previous attempts with those treatments.
I will be thrilled if Avastin works but I don’t have a lot of faith that it will. If it doesn’t work, I will be pursuing with vigor support to die with dignity. California now has a death with dignity law and I strongly hope that I will qualify. My problem is that if meningioma tumors spread and cause increasing damage to my brain, I will be unable to continue getting doctor support to die because the brain damage will reduce my sharpness. Unlike cancer victims, it will not be possible to say that I have six months left before I die. I could have massive brain damage but a strong heart and could go on living but be brain dead. I very much hope that I will be able to find support within the new law and leave my family and friends while I have dignity. If not, I will be forced to try and take my life completely on my own. I want to make it clear that no one else, family or friends, will have assisted me in doing this.
Sincerely, Janice Childs, 9-10-16
Janette had won, or so it seemed at the time. From controlling Janice’s thoughts and speech, she had taken over our lives. Janette was an agent of chaos and fear. Only one thing stood in the way of her total victory.
In June of that year, the California legislature had passed the End of Life Option Act (EOLOA). In other words, physician assisted suicide was now legal in the state. There was a way out of the scary scenario that Janice had alluded to in her letter. Unlike some terminally ill patients, Janice’s greatest fear was not pain or side effects from chemotherapy, it was cognitive deterioration— the loss of the competence and control that we ordinarily take for granted. She could see herself confined to bed in a vegetative state with no clear end point. If she didn’t act in time, she would lose even the ability to end her own life according to the terms of the EOLOA, which dictates that a person can’t sign the intent papers unless they are mentally competent at the time.
In the meantime, we didn’t even know for sure if Janice would qualify for the program at Kaiser.
But there were still ways to keep fear at bay.
Janice was a planner. It’s tough to be a planner when you can’t see the future. She wanted to get ready for the end, make a will, sort through her things, decide who gets what, discard things she didn’t want to leave behind. I knew she was scared, but I didn’t stand in the way. Planners are like bulldozers, when they get started.
But first we had to let the family know what the doctors had said.
Janice told her family right away. Her mother, Naomi, had passed away in 2013, so she didn’t have to tell her, thankfully. It would have hurt Naomi a lot. She told her father, Rollie, her two brothers, David and Ben, and her sister, Susan. Both my parents had died a long time ago, so I only had to tell my brother, Bruce, and my sister, also named Susan.
Telling family and friends was the easy part. Telling our children, Daniel and Rebecca, was a lot harder.
In 2016 Daniel was twenty-six and Rebecca twenty-three. Daniel had graduated from college but wasn’t very settled, and Rebecca was still in school. Both children were already struggling with various problems. Telling them that their mother had just received a terminal diagnosis was like throwing a monkey-wrench into an engine that was already running on only three cylinders.
If only they were already grown up and settled and responsible and beginning to take care of us instead of us them. Then we wouldn’t have had to worry about them on top of everything else. If they already had a tendency to fall apart and had relationship problems with their mother, which they did, the bad news about her might cause them to collapse.
Daniel didn’t have a job yet or any money. He needed money to live on and for psychotherapy. He had a diagnosis of anxiety disorder. After graduating from Cal, he had come home to live briefly. It didn’t work out, so he soon left. Janice and I were already struggling with the problem of how to help Daniel make the transition to adulthood and independence without cutting him off completely or giving him too much. Usually, it’s an ordinary problem. But when Janette threw that monkey-wrench, it got a lot worse.
Rebecca was still in school, also at Cal, and living in one of the co-ops, the same one her mother had lived in when she was there. Becky had a bipolar diagnosis and so was receiving financial aid and didn’t need as much money from us as Daniel did. But she, too was struggling in various ways.
After delivering the bad news, we didn’t wait around for repercussions or for people to visit. We decided to leave town for a while.
Our destination was Jedediah Smith Redwoods State Park.
To be continued . . .