Doctor #3, #4, and #5 all had said the same thing as Dr. Page and Dr. Burton. The tumor was inoperable. I’m only twenty-eight, but it doesn’t matter. The treatments, the tests, the prayers—none of it mattered.
Cancer will win. It will kill me. Six months, at best.
Every doctor described slightly varying treatments that could prolong my life. Full brain radiation, chemo, experimental medications. They each told me I had options.
But I didn’t really.
I’d spent days researching each one. I’d read every informational packet they’d given me, every research article, every journal. Kyle had had to work this week, and so I’d spent my days home alone with Elly. We watched movies, went on walks with Beast, and gossiped about the old days. Nothing deeper than that—she couldn’t handle it. I couldn’t handle it. I knew they were waiting for me to decide, to tell them I what option I’d chosen. To tell them I was going to fight, I was going to beat an unbeatable cancer.
I wasn’t doing any of that. So, I said nothing.
I made excuses. I pretended to need a nap, when I was actually on my laptop, the faint hope left that something would tell me what the right choice was. I bit my lip and released it, counting the dots on the ceiling tiles above me. I was coming to the same conclusions as the doctors.
I had options, yes, but every result would be the same. I had a Grade 4 Glioblastoma. It was going to kill me. Treatment might give me an extra month or two, maybe more, but nothing would add another year, another lifetime. Everything would be a bandage on a gaping wound, hiding it, but fixing nothing. Each attempt at holding off the inevitable would make me sicker and sicker, miserable and paralyzed until the day I took my last breath.
It would be everything I’d experienced the first six weeks multiplied by thousands. I wouldn’t have a chance to do anything on my hypothetical bucket list. I wouldn’t even be able to get out of bed. The side effects would start almost immediately, and they’d never go away.
A few months ago, I’d been excitedly celebrating winning a permit to hike in the Half Dome at Yosemite Park, now I was excited to climb a set of stairs without seeing stars. That dream was long dead—even though I begged Kyle to go on it without me. Spoiler alert: he’d refused. Shocker.
My hand stroked Beast while I imagined this fight to the death. I pictured Kyle holding my hand as I lay withered in bed, and Delores wiping the vomit from my chin. Elly’s horrified expression as I became unrecognizable. My father’s pain while he watched yet another loved one succumb to cancer.
I didn’t want this for them.
I didn’t want this for me.
I thought of the other option, of doing nothing. I’d still have symptoms—blindness, seizures, paralysis—but I’d have time. I’d have a few extra months to spend with the people I loved. I’d have time to write the book I’d been procrastinating on the last few weeks when my symptoms had prevented me from doing anything but surviving. I would be myself…longer. Even if that wasn’t very long at all.
The options seemed ironic. One gave me more time on the planet, but less time as me. The other gave me more time as me, but less time on the planet. And yet, both offered a false claim of time—the one thing I wanted most. Time was intangible, a guess the doctors used to try to measure life, death, and everything in between. They wanted to make sense of something senseless, and I understood that desire, but it was still only a guess. We were all just guessing.
I dropped my hand to the bed beside me. Tightening my muscles, I laid still. Closing my eyes, I took slow, deep breaths and pretended this was it. I was paralyzed and blind. The cancer had come for me, and I was just waiting for death to be next.
The seconds ticked away. I waited, frozen.
Time is nothing without spirit, without the ability to enjoy it. A punishment for some, and a blessing for others. A reflection of the soul, not hands on a clock. I swallowed slowly, wondering if time was really what I wanted, or if I just wanted to enjoy the time I had left.
Opening my eyes, I knew I didn’t want blindness. Fluttering my fingers, I didn’t want paralysis. I didn’t want cancer to have the final say of how I spent my last moments. I didn’t want poison poured into my body in hope of a few more miserable months.
Cancer didn’t get to be in charge. Maybe this was why I didn’t feel entirely broken. Maybe this was why I felt a sliver of inexplicable power in the face of it all.
I didn’t want more time. I wanted a choice.
And I knew the choice I wanted to make.
Chapter Fourteen
Friday, May 23, 2014
* * *
“How are you doing today, Tessa?” Dr. Page asked, entering the exam room with an oversized clipboard and a nurse on his heels.
I stared at him. “I’ve had better days. You know, like before I found out I was dying.”
Today’s motto is fuck it and fuck you. And I’m not even sorry.
“Oh, of course.” Dr. Page cleared his throat. “Well, hopefully we can reach some decisions today that’ll help ease you through this transition.”
My brows pushed together, wondering if he moonlights as Charon, ferrying people across the River Styx. Anything short of that side job, he won’t be able to ease me through this ‘transition.’ Death was staring at me from the opposite shore, and there was only one seat open on my ferry ride.
“Tessa, have you made a decision?” Kyle prompted me.
He was standing between my dad and Elly, waiting for me to say I was going to fight this to the end. I’d go down swinging, battling unseen forces. I’d never let it win; I’d never surrender.
That’s what they wanted me to say.
That was what they’d been waiting for me to say for days. It was also why I’d dodged every one of their questions since I made my decision. The truth was I still wasn’t certain how I wanted to die. My only certainty was, despite their hopes for a miracle, I was dying, and I didn’t want to give up what little time I had left fighting for more.
I kept my focus on Dr. Page, a desperate plea in my eyes. He followed my gaze to my family and nodded, understanding. “Would you folks mind giving Tessa and me a moment alone, please?”
“What? Why?” Kyle stammered, nerves dashing across his face.
“Just routine.” Dr. Page held open the door and everyone but the nurse shuffled out.
“Call us when you need us, Tessa,” my dad said.
I smiled reassuringly at my dad as he pulled Kyle along with him.
I knew Kyle was nervous, and his way to quell those fears was through trying to gather as much information as possible. To be there for every moment. To control what was happening to us. I wanted to grab his hand and tell him death couldn’t be controlled, and that was okay. That I was angry about everything, and that was okay, too.
But I said nothing, nodding instead. “Just a couple minutes, guys.”
Elly blew me a kiss, following the men out.
The nurse closed the door behind them as Dr. Page sat on a rotating stool and looked at me. “So, we’re not doing treatment?” he asked.
I shook my head.
“Let’s talk about palliative care, then.”
That simple. Relief rushed through me, my shoulders sagging as the air in my lungs pushed out in one loud exhale. There was no argument, no second guessing, no explanation. This was my choice. These were my options.
He gave me a half-hearted smile—mostly pity—and pulled a pamphlet out of the file folder he was holding. I took it from him, leafing through slowly. Muted blues. Clear statistics. Soothing, somber phrases. It read so quiet, resigned. Peaceful.
“I’m going to prescribe some pain medications and anti-seizure medications. At this stage, both will be on an as-needed basis. We’ll reevaluate dosage as things progress.”
I nodded again.
“Have you thought about hospice care?”
Not happening. “I don’t want to die in a hospital,” I replied, adamant.
“Hospice i
sn’t usually in a hospital, rather a separate care facility. They strive to feel just like home,” he assured me.
I wasn’t buying it. “I’d rather be in my own bed, at home, with my dog and my family.” There was no chance in hell I was changing my mind on this.
“Understandable. We can arrange for that. In the meantime, you’ll have visiting nurses checking your vitals and helping you with your medication. It’s more expensive, but hopefully your insurance will cover it.” Dr. Page jotted a note on the file.
Biting my lips, I rolled them between my teeth. I released them, took a deep breath, and asked what I was afraid to know. “How long will it take without treatment? What will it be like?”
Dr. Page lifted his head, focusing on me again. His expression was careful, poised, and it dampened my anxieties for a moment. “Over the next few months, you’ll develop worsening headaches. You’ll fatigue more easily. You may experience seizures within a couple months. Your vision will slowly regress—black spots, blurriness, possible blindness. Once that happens, it won’t be long. Eventually, you’ll start to lose sensation—numbness—in parts of your body, then your entire body. You’ll be paralyzed which will cause your organs to shut down. It won’t be long after that—maybe hours.”
Dropping my head to my hands, I tried to focus on breathing. In. Out. Filling my lungs. Exhaling out. Breathe, Tessa. Lifting my head, I searched the room for something to focus on—something to ground me. A skeleton hung in the corner from a metal pole. I counted each bone, head to toe. It’s missing a finger. I pictured it with skin. I pictured it alive.
I pictured it as me. Was it really that simple?
Bones. Skin. Here. Gone. In. Out. What was the point of any of it?
“What if I don’t want to go through any of that? If I don’t want to be a prisoner to my own body?” I was sounded desperate, but I didn’t care. “Isn’t there something I can do?”
Dr. Page shook his head. “I wish I had a better answer for you.”
“It’s my life, doc,” I told him. “I need something. I can’t die like that. It’s so…” I shudder, my entire body trembling as I pictured what he’d described. “There has to be a better way, Dr. Page. Please.”
He paused and glanced at the nurse standing beside him. Her eyes were brimming with tears. She was trying to be less obvious, nose down leafing through papers in my file. Dr. Page, the Santa-lookalike seemed conflicted, unsure of what to say next. Or better yet, knowing what he wanted to say, but unsure if he should.
“What?” I pushed, wanting to hear it.
Inhaling, Dr. Page explained, “In cases such as these, it’s not unheard of to look into death with dignity. It’s a very personal decision, one none of us can, or should, make for you. It would also involve a lot of logistics to make happen, which might not be how you want to spend your time left.”
I frowned, unsure where I’d heard the phrase before. “Death with dignity?”
“It is sometimes referred to as physician-assisted suicide. It is only available for terminally ill patients who have no chance at recovery. It is only legal in two states, neither of which are Illinois.”
“Suicide? Are you going to ‘Dr. Kevorkian’ me? Just kill me here and now?” I balked, baffled as to why two doctors had now mentioned suicide.
Suicide was wrong. It was selfish. I’d been told that all my life. A girl from my very-Catholic high school had killed herself during my freshman year, taken a whole bottle of pills and couldn’t be revived. Not once had I heard a single word of sympathy for her. No one discussed how much pain she must have been in to do such a thing, or why she’d made such a drastic choice. No, sympathy was reserved for the innocent people she left behind. She’d hurt them with her sinful actions, and we’d grieved for them—not her. Blame was tossed around as easily as the latest high school rumor, everyone shaking their heads in disapproval at her grave.
I might not be the best Catholic in the world—or even consider myself Catholic at all anymore—but that ideology had been ingrained in me my entire life. The Church’s stance on suicide was clear—suicide was an unforgivable mortal sin. It wasn’t an option.
So, why did it keep coming up?
“It sounds more gruesome than it is.” Dr. Page tilted his head to the side slightly, easing back in his chair. “It is legal in Vermont and Oregon, though it looks like other states, and maybe even federal laws, will consider it soon. Of course, none of that is guaranteed forever. All it takes is one new president to change everything. I hear in 2016 we may even have our first female president. For now, anyone who chooses to go this route needs to move to one of those two states and establish residency. Once they do so, they make an oral request for the medication to a doctor. It’s two medications, mostly a very high dosage of barbiturates. The first puts you to sleep, and the second stops your heart.”
I blinked, trying to imagine taking pills and knowing in minutes my life would be over.
Dr. Page continued. “Once an oral request is made, the doctor waits fifteen days, then you make a second oral and written request in the presence of no less than two witnesses who have no vested interest in the matter. You will need to be psychologically assessed, determined if you’re capable, informed, and voluntarily making the decision. If—and that is a big if—you pass each of those steps appropriately, you will be prescribed the medication to use at the time of your choosing. Even then, less than half the patients who receive their prescriptions end up actually taking it. Like I said, a very personal choice.”
I shook my head, trying to wipe the idea from my mind. I don’t even know why I was listening to this—it was not an option. “My family would freak. I can’t. I can’t even consider it.”
But I was considering it. The very idea…I could be in control. I could choose when cancer stole my life. I could choose. It was the first hint of power I’d felt in months, the first time I’d realized I could have a voice…not only in my life, but also in my death.
It was intoxicating.
“That is perfectly fine. It is completely your choice to make—not mine, not your family’s. In fact, that’s the only thing I’d encourage you to consider. Don’t decide the rest of your life based on what other people will say. Base the decision on what you want—it’s your life and it’s your death. No one else can experience this with you. You will be alone in the end, and you need to be alone in this decision.”
His words hit me like a stack of bricks dropped on my head. I bit my tongue and swallowed my nerves, the thought echoing in my head.
You’ll be alone in the end.
My mother. She died while my father was at work, and we were with the sitter. Only a nurse or doctor by her side, and even that’s just a guess. It was after the September 11th tragedy, and despite my father’s protests, national security mattered more than having a dying wife in the hospital. We weren’t prepared. No one had expected it so soon. No one had expected a young mother to leave behind two children and a loving husband either.
Everything about death is unexpected…unless it’s not.
“I’m doing palliative care. I could never—” I paused and exhaled slowly. “I need to think about everything.”
“Of course. I have your prescriptions here. This one is for seizures, which hopefully we won’t encounter for a while.” He held up one script, then another. “This one is for nausea, which should decrease as the radiation leaves your body. You’ll notice you’re feeling better soon. You’ll gain some weight, feel stronger, even possible hair regrowth. The radiation makes you feel sick, so as your body heals, it will become easier. This last one is for pain.”
“If it’s going to get easier, why do I need these?” I tucked the scripts into my purse anyway.
“The symptom relief will be temporary. As the cancer grows, new symptoms will arise and your health will decline. For now, the nurse will come once a day to check your vitals, but we will eventually need to increase the visits as things progress.”
Prog
ress. Ironic. I’d always thought of progress as a good thing.
“Do you have any questions?” he asked.
The nurse in the corner glanced up at me, her eyes red.
“Why?”
It was all I could think to ask.
I’m twenty-eight. I’d done everything right. I’d lived a life I’m proud of, but not nearly enough of it. I wanted more. So, my only question…why?
“I wish I knew the answer, Tessa. I wish we could predict and prevent diseases before they ever occurred. Maybe science will figure it out one day, but now?” Dr. Page shook his head with a heavy sigh. “We simply don’t know. It’s unfair. It’s tragic. I wish I could do more—I wish I could change this for you. All I can do is suggest talking to your minister, if you’re religious. It might help you make sense of everything.”
The nurse sniffed and rubbed her cheek against her shoulder.
“I’m going to eat an ice cream sundae with every topping tonight. None of that how-many-points-to-not-be-fat fake ice cream. I’m eating full fat, caramel and hot fudge ribbons with every candy topping,” I told them, slowly at first, then hastening as I thought about all the things I wanted to do.
Everything I’d said no to, to be healthy, to add years to the end of my life, to love my body. All the gluten-free shit I’d sworn to friends tasted as good as warm rolls right from the oven, slathered in butter. I’d wanted to feel good, look good, be good in a body that had always been meant to betray me.
Fuck. That. Shit.
“And fried Oreos,” I added. “I’m going to finally try a fried Oreo.”
Dr. Page smiled and the nurse let out a loud burst of laughter.
“Sounds like a great idea, Tessa,” he said.
“You both need to have one, too.” I pointed at Dr. Page, then at the nurse. “Promise me. Promise me you’ll both eat fried Oreos.”
“I’ve never tried them,” the nurse admitted.
“Me neither.” Dr. Page grinned. “But I promise.”
The nurse nodded. “I promise, too.”
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