Most Memorable: October 2016
“This horror will grow mild, this darkness light.”
– John Milton, Paradise Lost
I haven’t attended Mass since before I got sick. It’s not that I’ve ever been a particularly religious person, but I did spend some time on the playground of the Catholic Church. I was baptized and went to weekly Confraternity of Christian Doctrine meetings, and attended my first communion just before the diagnosis. But I never made it to confirmation, or finished reading the abridged Bible that was given to anyone under the age of ten. My nightly prayer soon became weekly, and then ceased to exist altogether. There’s not a specific day that shook my faith, but rather a lack of particular moments needed to reaffirm it. It was, and then it wasn’t. The rest was just chaos.
If there’s ever a time for silver linings it came in the form of reading Paradise Lost almost ten years later. There was something terrifying about my lack of religious knowledge going into the book. Never before could I imagine myself even considering Satan’s side of the story. Sure, I still knew that he was bad and yes, I could see the obvious flaws in his reasoning. But at the same time, this rogue creation of God was just a selfish angel who didn’t know how far down his rebellion would take him. Then came Jesus, and Satan suddenly paled in comparison. This Messiah was willing to sacrifice himself for God’s greatest work, simply to offset the harm being done by a fallen angel. They were just characters to me, still are in a way, but they have unequivocally grown into more. They’re intrinsic parts in the sum of the whole.
As my psychiatrist likes to ask whenever I tell a story, “So where is Lillian in all of this?” His questions used to annoy me as I attempted to explain that I already was in the story, but I soon began to find them helpful, something I’d never truly admit to.
So, where is Lillian in all of this?
As I said before, this whole thing started almost ten years ago, in my final few weeks of first grade. I remember because my surgery was scheduled on the second-to-last day of school and I was devastated that I would have to miss those last two days. Looking at it now, I’m amazed that missing a couple days of school was the worst I thought could happen. But it also gives me hope that maybe in a few years cancer, too, will be something that I look back on without sweaty palms and a clogged throat.
This cancer came in the form of a desmoplastic small round cell tumor, also known as DSRCT, a soft tissue sarcoma. While sarcomas are normally found in the connective tissue of the body, mine was completely encapsulated in my left kidney. The tumor had just missed my renal vein, the one that’s connected to my inferior vena cava, which transfers deoxygenated blood back into my heart. I was lucky. All that was required was the removal of an organ and a year of intense chemotherapy cycles. Very lucky.
Other than periodic gross hematuria—red blood cells in my urine—I appeared completely normal upon my initial examination. In fact, I didn’t look sick until I started treatment. I developed an eerily thin frame and bald head like most cancer patients, but not all of the side effects were temporary. The chemotherapy I was administered was not meant for the quality of life, but rather, life expectancy.
Even now, almost a decade cancer-free, we’re still waiting.
We’re waiting for the other shoe to drop; waiting for the doxorubicin to finally show itself in my heart, cardiomyopathy to set in, and then congestive cardiac failure all together; waiting for etoposide induced anemia to get out of hand; waiting for vincristine and Cytoxan to truly render me infertile; waiting for ifosfamide to catch up to my other kidney. I’m waiting for the osteopenia to get to be too much, for the Raynaud’s to spread, for the mass near my thyroid to grow, for the acid reflux to burn up my esophagus. I’m waiting and I’m terrified, but most of all, I’m tired.
* * *
As Satan rallies his troops after losing the battle in Heaven, he remarks, “The mind is its own place and in itself can make a Heaven of Hell, a Hell of Heaven.” I still can’t help but wonder if Milton set out to have Satan be anything but the archetypical bad guy. He’s just an abnormal cell in God’s body, slowly infecting others and leaving heaven divided, ultimately affecting man despite the successful cure-all known as Jesus. Satan is just one of the many anomalies in our universe.
The scare last year came when I broke my tailbone running Cross Country. Yes, literally while running. There was no slow-motion fall or memorable hit, but the MRI did, in fact, show a break. There was also a fuzz on the screen, right where the scan cut off. There was something off in my doctor’s voice—the orthopedist who had gone into this as unsuspecting as we had—when he was explaining the oddity of the break and its location. He even said that it could be nothing, but given my history, there was also the possibility of cancer. I needed to get an MRI with contrast, which meant that I would be administered gadolinium, essentially lighting up my body under the scanner. This was all for the doctors to be able to look at my whole back and pelvic region, which meant that there would be a few weeks of waiting.
My mom and I were both a mess as we left the doctor’s office. She sobbed and I gradually allowed the numbness of the moment to spread. I remember she didn’t eat dinner that night, skipping her first meal in quite a while. She had been doing so well, too. And I knew that my dad drank that night, which wasn’t unusual or necessarily bad, except that the alcohol wasn’t to loosen up, but rather block out. We were falling back into the abyss, and the only thing we had in common this time was the fear of the known.
We’re not ones for overreacting, but if the cancer was indeed back, there was nothing for the DSRCT to be encapsulated in, nothing to prevent it from metastasizing throughout the rest of my body. It would continue to grow throughout my bones, slowly overtake the tissues connecting my vital organs and eventually spread into my bloodstream. I wondered how I would die this time, what the fatal blow would be. Would the cancer attack my heart, killing me with the classic cardiac arrest? Or would my other kidney get infected, failing before we could find a donor to transplant?
In my mind, I was already sick again. All I could think about were the white walls of the hospital, the methodic beeping of an IV drip, the sickly sweet nurses with butterflies on their scrubs. Even the smell of certain hand sanitizers made me nauseous, and I could already feel the cold press of the doctor’s clean hands on my body, asking me where it hurt. I had begun to have night sweats, related to nightmares, when I was able to sleep at all. I would wake up coated in sweat and more jittery than usual. I took to lying on the floor and staring at the wall, not my best coping mechanism, but since I couldn’t run, it was the only one that helped when everything got too loud.
The problem with flashbacks is that while you know you’re not actually in the past, you’re still caught in the moment, feeling everything. My amygdala—the part of my brain that truly kicks into action during times of intense threat—has been going nonstop for far too long now, preventing my hippocampus from working like it’s supposed to. While this hypervigilant, dissociative state is necessary in times of great threat, it’s only supposed to last for short term danger. I should not be resorting to my primal instincts as I eat lunch, or do my homework, or try to sleep; I should be letting my hippocampus do its work, sorting out my memories and allowing this trauma to become a thing of my past. Except it can’t, and therefore this state of panic has spread throughout all of my memories. This means that regardless of what I’m doing, I can—and often do—accidentally trigger myself into a hyper-alert state. And as these episodes accumulate, I enter an anomaly known as sensitization, in which even the smallest things—a phone ringing, bumping feet with the person across from me at a table, even a friend hugging me from behind—become yet another trigger.
I don’t need to forget or purge these moments from my memory but rather, pack them away into the past. But for now, I’m stuck with the memory of being driven to the ER in the middle of the night, where I was repeatedly jabbed with a needle at the still healing incision in my chest because the nurse assigned to me just couldn’t access my port correctly; peeking into James’ room as his mom sobbed with my own mother a few steps behind me, and watching as the doctors ran in with a crash cart to attend to my friend, convulsing on the bed, his garbled screaming matching his erratic movements; not knowing what suicide was, but due to the hormonal imbalance of my anti-nausea medication, telling my mom that “I just want it all to end”; going into anaphylactic shock during a platelet transfusion at Dana Farber Cancer Institute; and most of all—as insignificant as this may seem—watching in the mirror as I pulled out my hair in clumps.
I still remember everything, and that scares the shit out of me.
* * *
“Now conscience wakes despair that slumbered, wakes the bitter memory of what he was, what is, and what must be worse: of worse deeds worst suffering must ensue.” As Satan watches Adam and Eve in Paradise, facing glimpses of his heavenly past, he develops a kind of nostalgia. Up until Paradise he’d managed to rationalize Hell, make it his own Heaven of sorts. And that was okay until he once again saw what could have been. And then it wasn’t enough.
I met my own devil in November of last year when my scans were cleared. My parents were relieved, finally able to breathe again. And I was relieved, too, but that didn’t stop the inability to get out of bed in the morning despite the insomnia, or having trouble concentrating on anything that wasn’t completely necessary. In fact, I think things might have gotten worse. I continued to lose weight, the bags under my eyes grew darker, and my already thin hair kept on falling out. I couldn’t help but wonder if I was really even cancer free. Nobody else with DSRCT had gotten off this easy, so why should I? The realization that every ache of my back or stitch in my side would be a cause for concern for the rest of my life was terrifying.
I ended up seeking professional help for these flashbacks, as well as anxiety, depression, insomnia, brain fog and general loss of interest in life. This wasn’t the first time that I’d spoken to a psychologist or psychiatrist or “talk doctor”, as I called them when I was little. But this was the first time that it wasn’t just damage control.
My anxiety post-cancer was extreme; to the effect that I couldn’t decide which toy to play with out of fear that one of my parents would die if I chose wrong. It didn’t make sense, and there were obviously no true repercussions to any of my choices, but it gave me some semblance of control in my life. I was eight, and that was about as much as I could handle at the time. Then there was the “spitting in my sleeve” phase, where I managed to convince myself that whatever I swallowed—even my own saliva—would harm me. Like I said, damage control.
I was referred to Dr. Hanna: an old, Egyptian psychiatrist that seemed to have spent half of his life at various universities, yet still thought, “school these days is bad for the soul.” He once told me, only a few weeks into my treatment, that he thought, “we should all return to the jungle. Classes would be basic survival skills and of course, no grades!” He then proceeded to laugh at his own joke, a startling foghorn of a noise that I would eventually grow used to.
Dr. Hanna did initially spend some time with damage control, working with the immediate problems until he could figure out what exactly we were dealing with. He put me on some anti-depressants, anti-anxiety medication, and sleeping pills in an attempt to talk me off the edge of whatever abyss I was about to fall into. He also added Lorazepam, a fairly heavy duty and addictive sedative for “just in case” instances, which soon became four o’clock every afternoon.
For our first few appointments Dr. Hanna covered the basics, trying to figure out the true origins of my problems, always starting and ending the sessions with, “Do you feel suicidal?” To which I would honestly reply with a shake of my head that no I was still not feeling suicidal. In fact, I never was suicidal, and I think that’s one of the most confusing parts for people. I wasn’t cutting or drinking or starving myself to death, but I stopped looking for cars before I crossed the street and began spending too much time outside in the snow, grateful for the numbness it provided. Sure, I lost interest in life, but I never completely gave up on it.
That was our starting point, and what drew Dr. Hanna to the conclusion that I was suffering from Post Traumatic Stress Disorder, from which my depression, anxiety and insomnia extended. He explained that it was actually quite a common experience for people with fatal illnesses, except usually they were dying, so there was nothing ‘post’ about it.
“Lillian,” he said, at the first appointment spent following a PTSD treatment plan. “You need to understand something… you are grieving. Okay?” He always waited until I made eye contact with him. “You are grieving the life you lost, the children you may never have, your own shortened youth, and the deaths of your friends in the hospital. That is a lot of grief, Lillian. And that is okay.” ‘Okay’ would also be something that I’d hear a lot of over the following months. Make no mistake, okay is not good. Okay is okay. But sometimes that’s enough.
However, I had the audacity to think that okay was not enough, to think that I deserved more. When I shared this with Dr. Hanna, he informed me that I did, in fact, deserve to feel better and asked me why I thought otherwise. I explained, harsher than I’d meant to, that I shouldn’t be weepy over surviving all of this. I should be grateful and enjoying life, not too tired to get out of bed in the morning. “And that is what we are working towards,” he said, smiling. He was always smiling, this all-knowing grin that had the wrinkles on his face swallowing his eyes whole.
Dr. Hanna was—and still is—a devout believer that, in the wise words of Mammon, “our torments also may, in length of time, become our elements.” He liked the idea that there would be some end-game from it all, a common goal that I could build up to. Even now, he’s trying to find a way to wean me off of some of my medications, because the dosages I’m on aren’t sustainable for everyday life. But that would only further the mess that is my autonomic nervous system, where the sympathetic structure controls my life; so we wait. He’s a bit of a Raphael himself, helping to break down the barriers between my mind and body, omnipotent and follower.
* * *
As most people know, Eve finally gave into temptation and ate from the Tree of Knowledge. This simple act, consuming the forbidden fruit, became the downfall of man. Somehow, as Adam followed his wife into the great unknown, this glimpse of knowledge essentially killed them. They could see it all: the suffering, the despair, the truth. They knew, and that ended them. Adam was well aware that they were both foregoing the promise of immortality and a life without suffering. But he was somehow okay with it all, which baffled me as a reader. Yes, Jesus sacrificed himself so that they could still have some short life, filled with painful childbirth and roses with thorns. But the genuine sacrifice, the one that resulted from true free will and a power that even God couldn’t contain, was that of Adam. Our great creator could only watch as his perfect, passionate being succumbed to a love so great that it consumed him whole. The love Adam shared with his wife was stronger than that which he held for God. No matter how many times they prayed each day, thanking the omnipotent for their wonderful lives, a different kind of worship happened each night, one that brought them together in a bond so strong that it threatened the very control of God.
Part of the treatment for PTSD is called “integration”. Protocol for this varies from case to case, but I began—per request of Dr. Hanna—to find out more about the very specific nature of my sickness. Something that I never told my parents, or any of the few people who were well versed in my treatment, is that I tried to track down some of the few individuals who had been diagnosed with DSRCT. I didn’t share my findings with my mom and dad because I’m pretty sure they already knew. Every lead that I followed was a dead end. Literally. Dead or dying. So naturally, I was confused. And angry. And sad. And so damn tired.
We don’t talk about it in my family. We talk around it, or in a very abstract way, but we never talk about cancer. Even my appointments with Dr. Hanna are rarely discussed. I drive myself to his office and pick up my scripts. My dad is pretty good at avoiding the topic, but my mom just snapped a few years ago. It was in the summer, and I remember bumping into the mom of one of my old chemo buddies at a routine checkup in Boston. Truthfully, I didn’t recognize the mother, but my mom did. She was quiet for the rest of the day, shaken most not by the friends who lost their children in the battle, but by those that were still fighting six years later. I’m not going to say that seeing the other woman was the root of mom’s problems or the inciting incident, but it was certainly the tipping point. Mom’s universe had been spun off its axis by the only person who could simultaneously make and break her life: her child.
As I said, she grew quiet, and then last year, way too loud. I was mad at her, irritated that she checked out during the scare and flat out angry when I realized how much she and my dad had kept from me. They’d kept me in as much of a bubble as they could, staving off the condition of my future. I remember my mom wouldn’t tell anybody outside of the immediate family the details of my cancer. She didn’t want them looking it up and letting slip how slim my chances were. I now realize that this was all done to protect me. I’m not a mom, but I’ve gotten to a point where I don’t blame her for holding back. I understand her having lost faith in religion. I don’t know how I’d fare watching someone I love go through all that. I think I would snap too.
* * *
As Adam and Eve depart from Paradise, having been colored by both Lucifer and Jesus in the garden of good and evil, they take a look out at the rest of the Earth. No longer sheltered by the immortal bliss of Paradise, the couple is aware of the uncertainty of their future. The journey they are about to partake in is inevitably fatal, and they are overflowing with knowledge of what’s to come. Still together, but permanently damaged by the rift between them, they take solace in the brief shed of tears that is so innately human, before continuing on.
I think I went into this hoping to write a victory piece—something that I could wave in the air, a testament to my survival—not a shredded white flag. But truthfully, I’m just tired. So I crawl out of bed, take my thyroid medication, wait fifteen minutes and take my other pills, brush my teeth, wash my face or take a shower if I’ve had a nightmare, force myself into something other than my pajamas, eat some cereal, drink some coffee… Breathe in, breathe out. Still tired. Now repeat everyday.