‘Hello, I’m Robert Ellerby, oncologist. I’ve been asked to review your case, and I did. What I found is not good, in fact it’s about as bad as it gets, but the good news is we have treatment that can slow it down and, sometimes, send the patient into remission. We should get started right away, with several treatments of chemo, followed by radiation. If we do, I think you can plan to live out most of your life expectancy, maybe with some recurrence but we can treat that too. First, we need to do a PET scan, but that has to be done as an outpatient. So, that first, then we start the chemo. Questions?’
Clair was stunned. She looked at him, shaking her head slightly from side to side, eyes trying to focus on his face, his skin, his hair, anything but his eyes, which were so kind. His words had spilled out like foam, bubbling away so that all that was left was the bitter taste of bile rising in her gut.
‘Are you saying I have cancer?’ she asked, eyes now seeking his.
‘Yes, sorry, I thought I had explained that. You do have what looks like stage IV, inflammatory breast cancer. We’ll have to wait for the full biopsy results but just based on the number of lymph nodes involved, and the presentation, I am pretty certain this is what we are dealing with. And you did just have a double mastectomy. Sometimes patients are a bit confused after anesthesia. What do you remember?’
‘I remember everything. The mammogram. The ultrasound. Everyone rushing around like I was an infectious disease, just about to spread. Consents signed. God. I don’t know. I do remember seeing my brother and sister-in-law, and my husband or who used to be my husband, crying. I’m just so tired now. Everything has happened so fast. In the past month, I’ve almost killed my husband, almost drowned, been committed, and now this. I just want to sleep, be left alone. So, what is it that you want?’
He sat, head bowed, hands on both knees. His hair, like a boy’s, falling forward into his face. She watched as he stood and walked over to a computer terminal set on a mobile stand, typing in instructions. Soon images appeared on the screen. He turned the screen towards her, pointing out areas with his index finger.
‘See here and here? These are patches on the CT scan that might be metastasis so we need a test called a positron emission tomography, or PET scan to make sure. Like I said, this is one mean cancer and we have to be aggressive. We also need to get a bone scan, more blood work, and then we’ll start you on treatment as soon as possible. There are protocols to follow, clinical trials. You’re relatively young, healthy, so you should do fine. We can’t cure it but we can slow it down. You will be able to live a good life, possibly with remissions. And we can treat recurrence as they appear. Every day we are learning more and finding new ways to treat metastatic breast cancer. It isn’t as hopeless as it once was.’
Jet had reached over and laid her hand on Clair’s arm. Clair didn’t seem to notice. She stared at the ceiling, as though looking for a sign.
‘Will I die if I don’t take treatment?’ she asked, eyes still on the ceiling.
He had walked back over to her, sitting on the side of the bed, his hands folded in his lap.
‘Well, I can’t say for certain, but statistically, the odds are not in favor of your surviving for longer than a year to eighteen months.’
‘Good. I don’t want chemo or radiation,’ she said, shifting her gaze to Dr Ellerby. ‘I won’t do it. I want death with dignity. Just give me the goddamn pill.’
* * *
The family meeting took place in Clair’s room. She sat cross-legged in the middle of the bed, her hair brushed back, revealing a face drawn and tired. Two drains snaked down on either side of her body, serosanguinous fluid coursing down, gathering in small plastic bags that sat on the bed. She tucked them both under the bright colored fleece blanket covering her lap.
Adam stood quietly in the corner, arms crossed, leaning against the sink. He looked so out of place, Clair eyed him curiously, as though seeing him for the first time. Ben and Jodie sat side by side on the window seat. Dr Ellerby sat next to her bed, along with a palliative care nurse named Lorraine. Her psychiatrist, Dr Rebecca Bernstein was there, presumably to attest to her ability or inability to make a rational choice, given her status as a committed person. Clair had spent more time with Jet than the psychiatrist but felt safe with her, nonetheless. Jet sat on the other side, in eye shot, but not part of the circle of family.
‘It’s your party,’ Clair said to Dr. Ellerby, holding out her hands as though offering herself and these people to him.
He in turn looked at Lorraine. She nodded. A woman in her late fifties, she had the look of a nurse who had seen every possible good and bad thing that could happen to a person, and still maintained her equanimity and hope.
‘Clair, family, our focus for this meeting is to help clarify what is happening, what you hope will happen, and how we can support your own goals for your care and life, going forward. Now, Clair, first, what is it you understand about your situation?’
‘My situation is that I don’t have time for any of this, Lorraine, and I do appreciate your support here, but given my situation, I just really don’t need, want, nor will I participate in this. I have made up my mind and that’s that. I do need information. On how to obtain the death with dignity pill. If you can provide me with that, great. If not, I can find out on my own, through the web, of course.’
Lorraine didn’t ruffle. Outside the window, a mourning dove cooed. Clair wondered, what is she mourning? Not my life surely. This unit is full of people worthy of mourning. But not me, not a woman who loses her child, her special needs child, to a wild and cold ocean. That woman doesn’t deserve any of this. Not these kind people, not this family, not even this husband who seems determined to forgive her for trying to kill him. She welcomed the pain in her chest, masking the pain in her heart. Lorraine’s voice brought her back.
‘OK, I can provide you with some basic information. First, you will need to acquire a primary care physician who will write the initial request for you to be considered for death with dignity. Then, once that is done, a second physician will also need to review your case, talk with you, and ascertain that you are rational, not depressed or suicidal, and that you do have an illness that is terminal and will ultimately cause you a degree of suffering that cannot be managed with traditional treatments. Now, all this will take time. You don’t currently have a primary physician, do you?’
‘No, I don’t. Other than maternity, I’ve never needed a doctor. So, I’ll just sign up.’
‘Again, it isn’t that easy. We currently have a significant physician shortage in our community, and it has to be a doctor – not a nurse practitioner or physician assistant. It could take a while, and then that person will have to treat you long enough to know you. They face big liability if they write for death with dignity without meeting all the criteria. Clair, this isn’t a quick fix. This won’t be your suicide pill.’
Clair exhaled. Her shoulders slumped.
‘I am not suicidal anymore. That isn’t what this is about. The issue here is one of failure of you all being able to understand my experience. This is about me, and only me. If I am going to die anyway, and that is what I just heard Dr Ellerby say, then I want it to be on my terms. It won’t be suicide because the cancer is the cause, not my own hand. It’s just my time. And I want it to be done my way, not wasting away, being a burden to others. What others? There’s that as well.’
‘Clair, we’ll stay here and help,’ Jodie cried out. ‘You know we will.’
‘I don’t want you to, Jodie. I want you and Ben to go back to your work, where you are needed. I have money. I can hire a caregiver. I don’t want anyone to bother with me.’
‘I’ll help,’ Adam said, his voice uncertain. ‘If you’ll have me.’
Shaking her head, she brought both hands up to her face. ‘I don’t want anyone’s help. I don’t deserve it,’ she said. ‘Don’t you unde
rstand?’
Dr Ellerby shifted in his chair, ‘Clair, how about letting me at least get the PET scan, while you’re going about the steps to apply for the death with dignity? And then maybe, we can just start some treatment. This cancer is fast. And we need to know if it has already spread to other parts of your body. It won’t delay death with dignity. In fact, it might look better for you if you are in treatment when the board receives your application. Right now, you do have a choice. If we wait, even a few weeks, that choice will be very different. And Clair, it won’t be pretty. It will be painful and messy. The cancer will eat away at your flesh, causing open wounds that will cause terrible suffering. We might not be able to rescue you once it gets that far. I don’t want you to suffer. Please, let me help.’
His frank and honest talk moved her. And it made sense to her. She liked the idea of doing something while waiting for death. It was a form of shedding, losing the bits and pieces of herself, readying for her final liberation. Like Devon, she thought, he began as a tiny spark, grew into an infant, a boy, then like a sun, exploded into an infinite possibility pattern, freed from the constraints of time. She will do the same only in reverse order. And they will meet, she knew, where the edges of time meet space.
‘OK, I’ll do it. I’ll take treatment. But only if I can get out of this place.’ She looked at Dr Bernstein. ‘If this isn’t proof I’m no longer suicidal, then I don’t know what is.’
Dr Bernstein laughed. ‘I think you’re right there. Clair, I’ll make up a conditional release from commitment for you and you can go home, as soon as Dr Ellerby releases you.’
‘Just like that?’ Clair asked.
‘Yes, just like that. I’m sure the judge will sign off, once she receives my discharge order. There will be certain conditions that must be met. And you will need to have a responsible adult to ensure you meet them. I will need a home address for you, though, and a plan for regular sessions with a therapist. As well as regular visits with me or another psychiatrist. And I can have our case manager refer you to a primary care physician. I also expect the district attorney will drop the criminal case, especially now. You are no longer a danger to Adam, or anyone else.’
Clair turned her head, looking out the window, at the rain cascading down the side of the glass. Home. The very word sent her into paroxysms of guilt, remorse, sadness at all she had been and not been. There had never been a home for her, she thought, maybe that’s why I failed to create a safe haven for Devon.
The house she had grown up in was never home. Clean as a realtor’s showcase, even her own room was a designer model. The housekeeper was on orders to pick up every object that didn’t fit Mother’s ideas of décor. Lavender, yellow, and pale pink. She almost gagged remembering how awkward she felt in that space, unable to close the door, not allowed to bring a friend over. Always on display. The only thing out of order, in her mother’s eyes, was Clair’s cello. That was tolerated because she received merit for her playing. Accolades and awards to brag about to her friends at the club and on her many boards and committees.
She had wanted the opposite for Devon. She had tried to create a space that was warm, inviting, loving. Giving him freedom to roam, and explore. Even with his disability. Maybe, surely, she had gone too far. Too much freedom, and she had let go. She had lost him.
‘I don’t know,’ she said shrugging her shoulders, gazing around the small group, feeling detached, remote from all that was happening to her.
Adam pushed himself off the wall. He stood, hands in his pockets, rocking side to side, looking like a nervous school boy.
‘I’ll take you home, Clair. If you’ll come.’
She looked up at him, seeing hope in his eyes. Could she do this? The commitment was meant to force her to live, when she only wanted, yearned, to die. Without that, and the safety of the psychiatric unit, if free, what would she do? Now, she was at risk of dying, not from her own hand but from this cancer, and she was terrified. Looking at Adam, standing there, waiting for her answer, she knew in her heart she wasn’t ready to die. Not yet. Not now. She had a new purpose, to live, for what she wasn’t sure. But she had to at least try and find a different way of being in the world. One without blame, shame, and hopelessness.
Feeling like she was riding a monster wave, moving too fast to maneuver or leap off, time and events outside of her control. She dropped her gaze, exhaustion taking hold, and slumped back against the pillows.
‘Yes, I’ll come home with you.’
Part Two
Chapter 14
Clair
As they turned onto the long, narrow road winding through the native Douglas fir forest, half a mile up to their house, she couldn’t drive the menacing thoughts from her mind. She was afraid Adam would send her back to the hospital. She had to keep it together. Somehow, separate her fear and dread from some emotion that wasn’t despair. Her guts cramped as she began perseverating, a maelstrom of words circling in her mind; I lost him, my boy. My beautiful, sweet child. She felt her breath catch, her heart race. Her hands gripped the sides of the leather seat, as her mind willed her breath to flow into her nostrils. Remembering the practice, engage the parasympathetic nervous system to override the sympathetic. The body will breathe on its own. Just allow it.
She risked a glance at Adam. The north wind was blowing. He had his window down, letting the late fall sunlight in. Low and golden, it cascaded, lighting him up, his hair, too long now, whipping around his face. He was disheveled, she noticed. Not like Adam at all. What had she brought them all to? The car slowed, her stomach churning. She did not want this next moment to come into shape. If only, for the thousandth time she chanted inwardly, if only. But she knew, as a scientist knows, there was never an if only.
Coming to a full stop, they both sat, still and quiet, listening to the wind in the trees, the river, strong from recent rains, gurgling as it rounded the rocky bend. Slowly, cautiously, as though not wanting to disrupt this fine peace, Adam opened his door, stepped out. He reached over the seat, grabbing hold of her small plastic hospital bag, containing medical supplies. She had no clothes or toiletries, only what she was wearing, borrowed from the psychiatric unit’s clothes closet.
Adam and Clair had barely spoken on the ride from the hospital. It had been a tearful parting from Ben and Jodie. Clair insisted they return to their work, that she would be fine. She didn’t know if she would ever see her brother or sister-in-law again. Ben had called their parents during the visit. The conversation had been cool and disengaged. He gave the phone to Clair. After a few meaningless words passed between she and her mother, then her father, she handed the phone back to Ben. Then, there were papers to sign, appointments to make, prescriptions to fill, and instructions on how to care for her drains and wounds. It was overwhelming. Now, they were here, and it was time to get out of the car, begin again.
‘Clair, are you OK to open your door? Or, I can come around?’ Adam asked, stepping out of his side of the car, bending down to look at her.
She heard his voice crack. Never had she seen Adam on the defensive like this. Unsure of himself. Part of her wanted to hold him, tell him it was OK, she was OK. But she didn’t. There was a river running between them, cold and turbulent. It was dangerous to cross. She didn’t know if she was more afraid of being swept away downriver or making it safely to the other side.
The wind whipped through the car, chilling her. She felt so weary. Contaminated by the hospital and all that sterility. Her body and mind craved mess, disorder, chaos. Anything to unsettle and disrupt this quietude. Her chest ached. Two long tubes hung down either side, attached to collection bags, with reddish, yellow fluid. Her fluid. Her blood, her being. Like when they brought Devon home, newborn and fresh. Her breasts full of milk, leaking through her shirt. Now this.
‘Oh sure, I can do this. I’m fine, Adam, really. Go on in. I’m not feeble,’ she answered.
> ‘OK, then, I’ll just take your bag in… I’ll put this in the bathroom.’
She noticed his pause, hesitation. Was he wondering where she would sleep, now that she was home? It had been his bedroom for the past few months while she had been in the hospital. Would she share it with him now? Who else had been sleeping in her bed, she wondered?
‘OK, I want a shower first thing so that is good. I’ll change my dressings while I’m in there.’
They were standing alongside the car, him on one side, she on the other, talking across the roof. A strong gust of wind lashed hair around her face, causing her eyes to water. She felt an ache go deep into her gut. How Devon loved the wind, running around the grounds, wearing a makeshift cape of old curtain material, pretending to be able to fly. As Adam turned his face away, she saw Devon in him. His silver blonde hair blew back, showing his fine and aging features. A thrill of longing swept through her. Not now, she cautioned herself. Not ever. You tried to kill this man. What are you thinking?
They walked together into the house. It was cold. The kind of cold that comes from not having any life in the space for a long time. No amount of heat or fire erases this cold. She shivered. Adam noticed and rushed to the gas fireplace. He flicked a switch and fire erupted, fake rocks emanating red heat.
‘Sit down, Clair. Here, on the sofa.’
Sitting down carefully, tucking her feet under her, she kept her arms close to her body, afraid the two tubes would go crazy and begin flying around her. She had never had so much as a minor wound before. This double mastectomy was like traveling to the moon after never going further than the end of the road. She smelt of antiseptics, and disease. She wanted to get clean.
The Wave Page 9
