Monday, May 19, 2014
Doctor’s offices are not made for this many people. All four of us were crowded into one tiny exam room with a table in the center, making it at capacity. No one could walk in without slamming the door into my dad’s back, but since he was sandwiched between Kyle and Elly, he wasn’t going anywhere either. Propped up on the table, I was the centerpiece.
At least, I was fully clothed this time.
The new doctor didn’t need to examine me physically. He had looked over my blood work, scans, and all the other goodies I’d brought with me from the last few months. I was fully aware I wasn’t going to like what this doctor would tell me, or the next. That’s why I have three different doctors scheduled this week to check, triple check, quadruple check.
I had pushed off my appointment with Dr. Page until Friday, wanting to get every other opinion before sitting down and talking about what I want for the end of my life. Because this couldn’t be the end of my life. It just couldn’t.
“Mrs. Falls?” A voice entered the room with an oomph as the door smacked my dad between the shoulder blades. He pitched forward. “Oops, you okay, sir?”
A young nurse stuck her head in farther and slid through the opening, needling her way in. My dad assured her he was fine, squeezing himself behind the table and out of the path of the door. A middle-aged man in a doctor’s coat entered next, doing the same shuffle through limbs and medical equipment to get to me.
“Are you Mrs. Falls?” he asked.
“Yes, and you’re Dr. Burton?”
He nodded. “Mrs. Falls, I’ve gone over your scans and blood work, and I’m afraid I can’t offer you more than what Dr. Page has already said.”
I blinked, not expecting him to dash my hopes so quickly like that. “There’s nothing? Nothing you can do?” I asked, feeling a sense of déjà vu.
“We could possibly continue treatment to prolong your life expectancy, but there is no cure. That could give you a few more weeks, maybe even a month or two.” The doctor was curt, but there was no malice to it. He spoke slowly, letting me absorb his words, but he didn’t sugar coat anything.
“What kind of treatments?” Kyle interrupted, squeezing my hand.
“Chemo, radiation, possibly a combination of both. There are experimental drugs we could try, but your tumor is aggressive. It’s unlikely they would work if they didn’t work already.” He paused, frowning. “And there are the side effects to consider.”
“But it would give me more time? These treatments?” I reiterated, ignoring his warning.
“Potentially, but there are no guarantees. Your last six weeks of radiation should have drastically reduced the size of the tumor. Instead, yours grew substantially.” He flipped through some pages on the clipboard he was holding, as if to confirm what he was saying. When he found what he was looking for, he nodded and looked back at me. “Treatment could prolong your life if the tumor does what we want it to do.”
“But my tumor doesn’t have a history of doing that,” I finished his sentence.
“Yes,” he said, confirming what I didn’t want to hear. “You’d also be experiencing all the side effects of radiation again.”
“She can at least try,” Elly spoke up from behind a nurse. “Right, Tessa?”
“She definitely can,” he confirmed, turning to look at me. “I’d love to help you do exactly that if those are your wishes, Tessa.”
“Let’s do that then,” Elly volunteered for me, and I felt a sinking in my gut at the idea.
Dr. Burton kept his focus on me. “I’d like to fully discuss the process with you before you decide. Your records indicate you suffered with a lot of symptoms from the radiation in the last six weeks. You had to be hospitalized in the middle of it, correct?”
I shuddered at the reminder. “It wasn’t an easy time.”
His frown deepened. “A new round of treatments would be worse. There’d be extreme nausea, boils lining your throat and mouth, possibly your esophagus. Your scalp would suffer first-degree burns, skin peeling, blistering. There would be headaches, temporary blindness, vertigo, itchiness, weakness, and a lengthy list of other symptoms. I know you’ve already experienced a good bit of these, but it wouldn’t get better—it’d get worse. That being said, it might be worth it, Mrs. Falls. It might give you more time.”
I watched Dr. Burton’s shoulders slump as he spoke, and I could tell he had little faith in any other outcome. The way his eyes widened every time he looked at my chart, it was clear he agreed with Dr. Page.
I’d been given a death sentence.
“Is that something you want to do, Mrs. Falls?” the doctor asked.
My family looked at me expectantly, hope in their halfhearted smiles and pained expressions. The truth was I didn’t want to give up. I’m not a quitter. I never have been. Part of me wanted to try if only to say I did, to ease the strain on the faces around the room. They were rooting for me, maybe even more than I was rooting for myself.
But they hadn’t lived in my body for the last six weeks. They watched and they comforted, but they didn’t feel it. They didn’t know the torment of a disease leaving you a shell of your former self, literally. This had been me trying—six weeks of excruciating trying.
And it had failed.
As I looked at their faces, a quiet, despondent voice in the back of my head said never again. Not even for a few more weeks.
Never again.
I pushed those thoughts aside. I couldn’t think like that. I couldn’t let cancer win. There were still three doctors left to see this week who might have an answer the others hadn’t. A miracle drug, a clinical trial, a fairy godmother, anything other than the torment of the last six weeks again.
“I have to think about it,” I said finally, despite the pit in my stomach telling me I already knew the answer.
“We’ve gotta be optimistic, right, babe? What’s there to think about?” Kyle asked me.
I looked into his green eyes, wide and pleading. “Right, gotta stay positive…” I agreed, my voice trailing off.
Everyone was looking at me. I mean, there were literally five sets of eyes glued to me, waiting for me to say I’d do it. To say I’d try.
I couldn’t say no.
I couldn’t say I never wanted to do a single treatment again, even if it meant leaving them sooner. I couldn’t say I didn’t want to keep going, only to be in so much pain again. Love was pain, and they were in pain loving me. Maybe I owe it to them. Maybe this is what love is.
“Sheila will get you several informational packets about it, and you can decide in your own time.” Dr. Burton motioned to the nurse behind him.
I exhaled, appreciating the reprieve from having to give an answer right then and there.
“Sounds like a plan, doctor.” Kyle grinned, the first time I’d seen him smile in a few days. Maybe since before Friday’s bombshell.
Dr. Burton nodded at Kyle, then looked back at me. “Mrs. Falls, if you do decide on continuing treatment, it will need to start within the next week. The sooner, the more effective.”
My body tensed at the rushed timeline. “If I started now, would that mean I’d be going through treatment until… the end? I’d be sick the entire time?”
I knew I had little time left, both doctors had confirmed it more than once, but I didn’t feel it. I didn’t feel like I could die tomorrow, despite what I looked like.
“We’d definitely do our best to limit your symptoms, but we’d try to continue treatment as long as possible. With some luck, that would give you more time.”
A non-answer if I’d ever heard one.
Kyle nodded excitedly and my sister looked relieved. Even after seeing the hell I’d been through the last six weeks, they looked like the doctor had handed them a miracle. I wasn’t sure we were all hearing the same thing, because nothing he’d said was making me feel optimistic.
“I’ll think about it,” I repeated, mentally pushing the knot in my stomach down as far as possible.
“It’s more time, Tessa. Doesn’t that sound better?” Kyle said, pushing again.
I tightened my jaw in frustration.
“Yeah, this will give us more time,” Elly added, stepping closer to me.
“It will give you guys more time, sure,” I snapped.
Instantly, I wanted to pull the words back into my mouth. The wounded look on my baby sister’s face hurt worse than any tumor ever could.
My dad squeezed my shoulder lightly. “Tessa.”
“I’m sorry. I don’t know if I want more time. Do you remember the last six weeks? Because I do. Hell, I remember every torturous second of it.” I shuddered. “If this is all I get, do I want to spend my final days like that?”
I closed my eyes at the truths I couldn’t hold back. My head hanging, I didn’t look at any of them. I couldn’t see the pain I’d caused on their faces. My heart heavy and pounding in my chest, I realized exactly what I’d said. My final days.
I’d never said it before. Not aloud.
I’m dying.
“This is actually a very common response,” the doctor said, speaking to my family first then turning to me. “It’s completely understandable to want to spend your final days feeling as normal as possible, Tessa.”
There were those words again.
“We can arrange for hospice care and manage your symptoms with palliative care to make everything as pain-free as possible,” he continued.
My brows furrowed. “What pain? I mean, if I’m not doing further treatments, what will happen to me?”
Everyone looked at Dr. Burton.
“As the tumor grows, your headaches will worsen. You’ll likely have seizures, increasing in intensity.” Dr. Burton looked straight at me as he spoke, never faltering. “Eventually, you will lose your eyesight. You will suffer numbing, and then paralysis, throughout your limbs first, then your whole body. As that happens, you will lose independent functioning. Your internal organs will start to shut down. After that, it will happen fairly quickly.”
“I’ll die,” I finished his thought for him.
He nodded.
I swallowed hard. “I’ll be trapped in my own body, and then I’ll die.”
“I’m very sorry, Mrs. Falls,” Dr. Burton said, his shoulders dropping slightly.
Kyle’s hand tightened around mine. I wished the doctor would just say yes, you’re going to die trapped in your body, like a human coffin. But as I stared at him and saw the sadness on his face, I realized maybe an apology was all he could say. No one was entirely comfortable around death, not even doctors.
“Does that have to happen? I mean, that’s just...” Elly’s tiny voice trailed off.
I glanced at her. White as a ghost.
“Unfortunately, that is the progression with this type of brain tumor.” Dr. Burton frowned. “There isn’t any way to avoid it without taking things into your own hands.”
I jolted, as if something had bitten me. “Suicide? I’m not going to kill myself.”
“Of course not, Mrs. Falls,” Dr. Burton replied, his expression regretful. “I’m sorry, I didn’t mean to imply anything. It’s not even considered suicide, despite the moniker ‘physician assisted suicide,’ so I can assure you there is no judgment. I shouldn’t have even mentioned it.”
“I’m not going to kill myself,” I repeated with a little less ferocity this time.
“We want Tessa with us as long as possible,” Kyle added.
No matter what was implied in Kyle’s words, but I bit my tongue. The what mattered to me. It mattered a lot, and I wasn’t sure Kyle would ever be okay with that.
My dad’s face was shadowed in doubt when I turned to look at him. It mimicked what I felt, and a wave of relief poured over me that maybe I wasn’t alone. Maybe he understood.
“We’ll get you the paperwork. Look it over. Do some research. Take your time deciding,” Dr. Burton said, reaching out to shake my hand. He and Sheila then left us alone in the examining room.
“How about I get the paperwork and you guys head to the car?” my dad asked, eyeing me with worry.
“I’ll go with you, Dad,” Elly said.
I shot her a small smile.
My family got it. I didn’t know how, but they did. They got that I needed a few minutes of quiet. I needed to process this in my own way, and they probably needed to process it away from me, too. They needed to cry and be angry and hate what was happening, but they wouldn’t do it in front of me. They would try to protect me from it, and I needed them to.
Alone in the exam room with Kyle, I stood and looked around. Walking to the counter next to the sink, I picked up a jar of tongue depressors and opened the trash can with my foot. Turning over the container, I emptied the unused sticks into the garbage.
“Tessa?” Kyle frowned as I closed the lid and put the empty jar back on the counter. “What are you doing?”
“Throwing away tongue depressors.” I held up my hands like it should be obvious.
He laughed. “I can see that, dork, but why?”
“Oh.” I looked at the trashcan and shrugged. “Because they’re depressing.”
Kyle laughed again and wrapped an arm around my shoulders, leading me toward the door. “At least, it wasn’t a pen this time.”
“There’s always next time,” I told him, waiting for the brokenness inside me to hit its peak, for the news of there’s nothing we can do to shatter me entirely, but it wasn’t. I wasn’t breaking. I was hurting. My heart was swollen with how much it ached. But I wasn’t shattered.
Somehow, I wasn’t breaking.
• ღ • ღ • ღ •
Thursday, May 22, 2014
My eyes ached from hours of staring at my computer screen. I squeezed them closed and rubbed my knuckles into the sockets, attempting to see straight. Giving up, I closed my laptop and laid across the bed. Beast hopped up and curled into my side, falling asleep while I stroked his fur and stared at the ceiling.
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.