Like tendrils of sweet peas, Brittany twined around me as her support. And just as tension generates along the stem of the plant because it cannot hold up its own weight, tension crept into our relationship. I felt I had to intervene in any situation that threatened to upset Brittany. I tried to be the combination of a mother and a dad; a supermom.
Reality set in in middle school, when it became obvious that I was mere flesh and blood, with weaknesses, foibles, and faults that made it impossible to protect my daughter from all pain. In fact, it became obvious that I should not protect my daughter from all pain. She had to feel the pain in order to understand consequences. I didn’t like this process of becoming an ordinary fallible human being, and I certainly didn’t like seeing Britt hurt.
The speed at which Britt now wanted to disentangle was frightening. I wanted to peel each tendril of curling, climbing vine gently, to tenderly unwind fragile shoots, and snip and pinch off wilted or damaged stalks. Teenaged Brittany moved at a different pace, willing to lose some vines and blossoms in her hurry to separate and become autonomous. Indeed, sometimes she seemed to want to use something more like a dual-action, precision-blade hedge trimmer. Even as I contemplated this, I realized that whacking at the plant with a hedge trimmer might leave permanent nicks and scars, but the plant would recover and bloom even more profusely.
11
Recovery
January 11—13, 2014, First 78 Hours After Craniotomy
Laughter is the closest thing to the grace of God.
—Karl Barth, quoted in The Harper Book of Quotations
In the wee hours of the first morning after the craniotomy, there was a shift change. Our male nurse went home and a female nurse arrived. I ached all over from my night in the plastic chair, and Brittany’s pain had been mounting. The new nurse was approximately the same age as Britt. “Craniotomy patients don’t suffer a great deal of pain,” she said, her face a mask of indifference.
“Call the doctor,” I said. “Do whatever you need to get authorization. If my daughter says she’s in pain—she’s in pain.”
The nurse heaved a sigh and left the cubicle. She returned with a syringe.
“I need a slow push because I get nauseous,” Brittany said as the nurse flicked the needle.
The nurse pushed the Dilaudid faster than I’d ever seen it pushed, and Brittany vomited. The nurse did not apologize. She just held out a plastic dish.
“Bitch,” said Brittany, as she slid into sleep.
When Gary came, I told him about the nurse. “We’ll deal with her when you’ve had some sleep,” he said.
Later that day Brittany was moved into a room in the Neurosurgical Acute Care Wing. It had a chair that folded into a bed, and was luxurious compared to the ICU.
At Gary’s insistence, I went to Britt’s house to get some sleep. I collapsed on the guest room bed, and slept for eight hours. When I returned to the hospital, I was thrilled to find Britt out of the ICU and in a regular hospital room where we would both sleep better.
Brittany had already had a postoperative MRI. That bit of news from Dan surprised me. The jaw pain had continued and made her extra cranky. She had a drain from the surgery site that I hadn’t noticed last night. I could see some bloody fluid in the clear tube. I tried not to think about what the fluid was. Brittany was twenty-four hours out from a surgical smack-down with her tumor. She was grumpy, bloody, and feeling the pain of battle.
I tried to think of what I could do to distract Britt from the pain. Digging through her overnight bag, I found David and Goliath. I hoped that as I read the fitting analogy, Britt might feel that she could continue her fight with the monster, cancer.
The next night, while making up the sleeper chair with sheets, I heard Brittany gasp.
“Shit,” she said. She held up one of her IV lines. Blood trickled across the back of her bruised hand.
I hit the call button, grabbed a paper towel, and pressed it lightly on her hand. “Ouch,” Brittany said. “It hurts so bad. There’s a knot there.”
A nurse came in and tried several times to get an IV started. The steroids that Brittany was taking made it hard to find veins due to swelling. It was excruciating to watch as silent tears rolled down Britt’s cheeks. I held up my hand. “Stop. We need a different nurse. No more tries.”
The nurse seemed relieved that I’d taken the task out of her hands. I headed out the door and toward the nurses’ station. “I need . . . my daughter needs . . .” I started to cry. “I need a vein whisperer. I want a nurse that can bring my daughter’s veins to the surface. Her hands and arms are badly bruised. She just had brain surgery, for God’s sake.” I took a deep quivering breath. “Can’t someone here get the damned IV line in?”
A nurse came from behind the counter. “I’ll get someone who’s really good, okay?” She put her arm around me and started walking me to Brittany’s room. “You keep your daughter company, and I’ll find an infusion nurse.”
“Britt, they’re sending someone good.” I pulled a chair to the head of her bed and smiled at her. “I’m not allowing you to be their pincushion. I told them you need a vein whisperer.”
Britt’s lips twitched up for a fraction of a second. “I want a shower so bad,” she said. “Wonder when that can happen.”
“I have a whole package of body wipes. After we get this IV in, I’ll help you do a head-to-toe wipe-down. By the time we’re finished, you’ll feel fresh and sweet.”
A different nurse came in with a supply tray. “Hi, I’m the vein whisperer.” She smiled. “I’m pretty good at this.” She took Britt’s arm and gently hung it over the side of the bed, letting the blood drain down. “I’m sorry you’ve had some misses on this IV. I’m going to get it started.”
“I hope so,” Brittany said.
“I have to tell you, you’re really alert and looking good for having just had a craniotomy forty-eight hours ago.” She smiled. “I’m sure you don’t feel that great, but I see a lot of patients, and you’re bouncing back strong.” The nurse was tearing open packages and preparing to start. Seconds later she lifted Britt’s arm, released the tourniquet, applied pressure to the vein at the tip of the cannula, and removed the needle. She capped the cannula and disposed of the needle, then carefully taped the IV in place. “Done.” She smiled triumphantly.
Brittany moved her arm carefully to rest on her abdomen. “It doesn’t hurt, either. I don’t feel that pulling sensation. Just a little cold feeling when you started the drip.”
“Well, I taped it down like Fort Knox,” the nurse said. “Okay, sleep well, you two.” The door swished closed.
Brittany and I struggled through a less-than-satisfying cleanup with the body wipes. She used a roll-on deodorant, making me nervous that the motion would loosen the IV line. Then I got a glass of water, her toothbrush, and toothpaste. She brushed her teeth and spat into a little dish.
“There’s nothing I can do with your hair,” I told her. “It’s stiff with some sort of orange sterilizing soap.”
“I feel better. Tired.” Brittany settled back as I placed another pillow under the arm with the IV lines. “I need some pain medication, so I can sleep.”
I decided to ask at the nurses’ station.
“Sure, but let’s get her to eat a little something before she takes the pills.” The nurse disappeared and came out with some Jell-O and crackers.
“I thought she received her pain meds intravenously?” I asked as we walked back to the room together.
“Not anymore. We try to get patients off of IV-administered meds as soon as possible.”
Brittany ate quickly. “My jaw is starting to really hurt.” She swigged the pain medication down with water. “Shit, I hurt so bad. Momma, can you get me a clean pair of fuzzy socks? My feet are cold.”
I dug around until I found the pink fuzzy socks in the overnight bag. Slipping them on her icy feet, I wondered what had caused her to be so cold. If the IV fluid wasn’t kept at a temperature similar to Britt
’s body temperature, it might have made her feel colder.
I put on clean sweatpants and pulled on my own fuzzy socks. I turned off the lights and padded over to my folding chair bed. The way the beds were arranged, my head was at her feet. Sighing, I slipped between the sheets.
I heard Brittany say something. “What?” I asked.
“Momma, will you get some hearing aids? I need you to hear what I’m saying while I’m dying.”
“You’re absolutely right. Repeating yourself is a pain in the butt. I’ll get my hearing tested.” I had been missing a good bit of conversations in restaurants and asking my husband to turn the television up louder and louder, avoiding the painful truth that I had lost some hearing.
“Momma. I’m dying. You know that, right?” Her words hung heavily in the air.
Somehow I’d let myself feel stronger by getting a competent person to start an IV. Somehow I’d let myself believe that I didn’t need to think about Brittany dying anymore, because she’d made it through the craniotomy. I was still relishing the fact that she was alive. Now, feeling clean and cozy in her room with her, I didn’t want to talk about death. I wanted to believe for a few more hours that she was going to live. I wanted to remain in a place where standing up for her was going to be enough. My heart shrank away from this topic.
My voice came out in a strange froggish croak. “I’m so hopeful, Brittany. You’ve bounced back from a craniotomy, one of the most feared surgeries. I think Dr. Chang bought some time.” I swallowed hard. “Also, Gary is searching everywhere. He’s making phone calls to other countries. He’s not giving up.”
“I can tell that Gary doesn’t understand I’m dying, but it’s important for me to know that you get it.” She sighed. “Dr. Chang may have bought me some time. He’s not talking five years anymore. He won’t even say anything about life expectancy anymore.”
“Gary will find someone somewhere.” I realized that I’d just made Britt’s stepdad sound like Superman.
“I’m not saying I wouldn’t love a miracle. But if we just back away and look at this situation very clinically, no one has survived this type of cancer. You see that, right? No. One.”
There’s always a first. But I don’t dare say this out loud. What can I say that’s hopeful, but won’t provoke her anger? I wondered.
“You’re an extraordinary young woman. We’ll take it one day at a time.”
“No! No! We will not take it one day at a time. Did you see my video? I’m planning for the sure eventuality of my death. I am not taking it one day at a time!” Brittany’s voice rose.
I’ve said the wrong thing, I thought. I’ve said the worst thing possible. I haven’t looked at that video yet. I’m afraid to see it. I’ll look tonight after she goes to sleep.
“Britt.” I backpedaled fast. “This is a multipronged strategy. Oregon is the backup plan. I support that. I understand. We need to get all of those details in place, and I’ll help.” I reached across the chasm between our beds, fumbling for her hand. “And honey, Gary is searching for a plan. He’s contacted a guy at Mayo who’s looking into the way viruses can be used to attack brain tumors.”
I felt the closing of communication. We weren’t on the same plane anymore.
“That’s all well and good, but you need to think about the fact that Chang only removed about 45 percent of my tumor. My best prospect for extended life was extensive surgical resection—like 95 percent removal. With only 45 percent removed, my life expectancy dropped a lot.”
“Forty-five percent,” I repeated like an idiot. I envisioned the other 55 percent of the tumor tissue entangled, like the roots of a weed, like the tentacles of an octopus, weaving in and out of healthy, working brain matter—too close to attempt to remove without causing loss of speech, sight, hearing, intelligence, and decision-making.
“Please listen to me, and understand. I am not going to let them burn the shit out of my brain. I’ve read about radiation.” I felt her hand ball into a fist beneath mine. “Open sores on my scalp. Hearing loss. Loss of memory and speech. They’d have to do so much burning. I won’t. Just so you know.”
My mind jumped back to Brittany as a teen. She was leaving the house, and as she closed the door she told me, “I’m spending the night with Kirsten, just so you know.” I’d always hated that expression. I’d sat her down a couple of times and reminded her that she still needed to ask me to do things; that “just so you know” wasn’t going to cut it. But now she was telling me what she would and would not do to try to live longer. She was defining what type of treatment she would engage in, and what treatments were not acceptable. In this case, “I won’t do it, just so you know” was going to cut it. She was an adult, and it was her body.
“Okay,” I said, gently squeezing her tapered fingers beneath mine. “Is your medicine working? Can you sleep now?”
“Yes,” she sighed.
I lay on my bed, unable to fall asleep after our conversation. I fixed my pillow at the other end of the bed, so I could hear Brittany if she awakened. I didn’t want her to have to raise her voice to get my help. That night I opened the email she’d sent late the night before the craniotomy, and watched the video. In her email, she said:
Don’t watch the video right now if it’s hard, but I am proud of it and very confident in all shared within. While it may not be a legally binding document, it helps make my introduction and intention clear. This YouTube video is only viewable to those with whom the link is directly shared, it is not publicly searchable or anything. Video file size required that I share it this way because it’s too big to email.
Hope you both are proud of me for trying to take care of these things wisely.
All my love always,
Britt
Included in the email was a copy of a letter to the palliative care team at Oregon Health and Science University. Brittany introduced herself as a twenty-nine-year-old woman with a diffuse fatal glioma tumor spanning her frontal lobe, temporal lobe, and insula.
She clearly stated the reasons that she had agreed to a craniotomy. “I am pursuing this surgery in hopes to improve my quality of life and prolong my length of symptom-free survival time.” She shared that she would like for the OHSU Palliative Care team to take her on as a patient after her surgery. “When I feel that my quality of life is no longer sufficient or I am in a tremendous amount of physical pain, I am choosing to pursue both palliative care and physician-assisted death through the Death with Dignity Act in Oregon.”
Brittany spoke of “being clearheaded,” of being “prepared to take all of the necessary steps,” and of the full support of her family and friends.
When I watched Brittany speak on the video, I was stunned. She was impressive, calm, cool, and purposeful. I knew that the doctors in Oregon would be blown away by her matter-of-fact tone of voice. Although a video could never have actually been used as a formal request (film isn’t provided for by law), I knew that Britt had been worried when she recorded this that things might go wrong in the surgery and she might lose the ability to articulate her wishes. I also knew that no physician could watch this and misunderstand my daughter. Documenting her wishes on film must have brought Brittany some modicum of peace as she prepared for her craniotomy.
I was deeply grateful that I hadn’t seen it the night before or the morning of the surgery. That day had been hard enough. I trembled and sobbed quietly as I saw with a new objectivity Brittany’s commitment to carrying out her plan, her forethought and focus. It was crystal clear that she was of sound mind and had made a conscious decision. If I was a steel magnolia, then Brittany was a rare titanium orchid. It was all there on film: her ephemeral beauty, the sophistication of her discernment, and her resoluteness of will.
My husband wouldn’t even talk about the video. It was that powerful, and he was that moved by it.
That night I had a nightmare. In the dream I was lying on my back, and Brittany was straddled atop my upper legs like a wrestler. In her hand she had a s
mall serrated knife. She would search my chest and stomach for a nonlethal place to stab me and slowly insert the knife. “It won’t kill you,” she said matter-of-factly.
After about a dozen wounds, I begged her, “Please stab me right in the heart and get it over with.” I jerked awake. The room was dimly lit and Britt was sleeping peacefully. I was afraid to go back to sleep for fear the dream would start again.
On her third day after brain surgery, Brittany was allowed to get up and walk around. It boggled my mind that she’d had a craniotomy less than seventy-eight hours ago. She was able to walk to the other end of the hall, where big glass windows looked out over the city. Britt had been circling verbally again for the past forty-eight hours. The ring of conversation began anew each time another person entered the room. Scientific recap of operation. Review of the inability to remove more than 45 percent of tumor, and what this meant in terms of life expectancy. Emotional plea for help in getting to Oregon. Detailed list of symptoms of death that she wanted to avoid by utilizing the Death with Dignity law.
My friend Sherri, and Larry, her husband, came to see Brittany. They spoke briefly with me in the waiting room on the way out. They told me that in their short visit, Britt had told them repeatedly that she was dying and must move to Oregon. I could see that they were in total shock and denial.
“Brittany is the most beautiful and intelligent young woman I’ve ever met in my life. I’ve been saying that for years. Volunteering in orphanages. Climbing mountains.” Larry waved his hands. “We must hold on to hope. There must be something that can be done.”
Wild and Precious Life Page 9
