by Lauren Young
Dr. Bidiwala held Kyle’s enormous hand in the air, as close as possible to the ceiling, by the yellow fluorescent light box. He rotated the hand slowly as he inspected it. A baseball mitt. A bear claw. A cartoon hand. The damn thing cast a shadow on our faces.
“Wow,” the neurosurgeon mumbled, deep in concentration. “You’re a real, live acromegaly patient, Kyle. I’ve seen one before, in medical school, but I never got to look at him up close. He wasn’t my patient. But you . . . look at your hands.”
It was our first visit to the neurosurgeon, and Kyle was leaving a stellar and indelible impression. Dr. Pam had referred us to Dr. Bidiwala, since they intermittently performed brain surgeries together. I enjoyed this doctor. Like me, he was fascinated with Kyle’s rare, multi-faceted disease and correspondingly bizarre physical deformities. If I molded a life-sized Kyle Young wax doll, I suspected that Dr. Bidiwala would be first to purchase it, and likely order a few more for his colleagues’ birthday presents.
We had already told Dr. Bidiwala about Kyle’s college football rings, none of which fit anymore. And Kyle’s shoes, which were all far too tight, and as good as garbage. In true acromegalic form, Kyle had outgrown all of his rings and shoes over the past few years. I had never found a pair of gloves that could fit his size 15 fingers – even rubber kitchen gloves couldn’t stretch big enough. Kyle constantly complained that his feet hurt, and had stopped wearing his favorite cowboy boots a couple of years before, much to his utter heartbreak as a diehard Texan. When we went to purchase new boots, the salesclerk measured Kyle’s feet as a size 12, 4E. The ‘4E’ meant that his shoe size was a “quadruple wide” and all his boots had to be special ordered.
I pictured my grandmother’s hands every time I saw Kyle’s swollen fingers. My grandmother had long suffered with arthritis, and her knuckles protruded in a way that pained my eyes to see. Kyle’s knuckles weren’t quite as sharp, but that was because the flesh had swollen to cover his enlarged joints. Underneath the skin, his finger joints lacked much mobility. His joint condition appeared similar to my grandmother’s, except she was 91 and he was only 33.
Since we’d discovered Kyle’s illness, everything made sense. Nothing was pleasant or fun anymore, but it sure as hell made sense. So many of his idiosyncrasies had really been deadly symptoms all along, signaling us that his health had gone so, so wrong.
- Enlarged hands and feet?
- Enlarged facial features?
- Thickened, course, or oily skin?
- Fatigue and muscle weakness?
- Severe snoring? Oh, my sweet Lord…Check.
- Increased chest size/barrel chest?
- Deepened, husky voice?
- Pain and limited joint mobility?
- Enlarged heart, liver, kidneys, spleen, and other organs?
We weren’t sure if Kyle had started developing the last symptom yet, but we did know that it was the deadliest aspect of acromegaly. Your internal organs grow until they are so swollen they explode, and then you die. True story.
“I usually remove about one pituitary tumor per month,” explained Dr. Bidiwala. “This type of tumor is common, but acromegaly is not. Only 3 or 4 in 1,000,000 people develop acromegaly each year.”
“How difficult is the surgery? What do we need to know?” I gulped. No part of this process had been comfortable. Not one minute.
“Well, since the tumor is benign, it is much easier to remove. A cancerous tumor is solid. A benign tumor is soft, mostly liquid. Most people don’t know that. I know it’s gross, but I tell patients that benign tumors have the consistency of applesauce. So essentially, you drain that type of tumor. We will be draining the tumor through Kyle’s nose. Then we’ll laser off any remaining cells to make sure it doesn’t grow back.”
Ugh! Which job was more disgusting: Being a neurosurgeon, or working for Colin? I couldn’t decide.
In the following weeks, when I explained the upcoming procedure to family and friends, I learned to say, “The mass will be extracted through the nasal passage,” instead of, “We’re pulling the brain tumor out through his nose.” Initially, I’d been using the latter phrase, and I felt terrible when one of my friends grew visibly ill from my poor wording.
Over the next hour, I listened to Kyle and Dr. Bidiwala talk, with the doctor studying Kyle’s various physical anomalies all the while. His voice, his body shape, and each distinctive protuberance on his face made Kyle the perfect case study.
When we had visited informational websites to research the disease, one of the tips posted was for patients to bring a 10-year-old photograph of themselves to doctor’s appointments. This would help the doctor see how much the patient’s face had transmogrified throughout adulthood. A slow and subtle killer, acromegaly is frequently ignored and misdiagnosed, and patients die with no explanation: bloated, immobile, and mystified.
Kyle’s college photo no doubt revealed noticeable changes in the structure of his face. A once relaxed, mega-watt smile had been replaced with tight lips, strained to pull back against his teeth. His lower jaw extended unnaturally far downward and outward, and stretched his skin tight. A previously lighthearted countenance was now overshadowed (literally) by a jutting brow and jagged cheekbones. All of that prevented any hope of neutral expression. Kyle was, as I had always joked, a very handsome, yet vaguely Cro-Magnon, young man.
“So, should we book the surgery?” Dr. Bidiwala asked, with an enthusiastic clap. “We can walk over to my secretary together, and put something on the schedule.”
Kyle and I exchanged frozen glances. Hadn’t Pam told Dr. Bidiwala the horrible news?
“Oh,” stammered Kyle. “We . . . can’t. We can’t have the surgery yet. The insurance company won’t let us. We may have to wait a long time.”
We both looked at the floor. The idea of waiting to operate on Kyle was ridiculous, and we all knew it. Even the insurance company knew it. But they didn’t care if Kyle suffered. Or died.
The fiercest of eyes pierced through us. Our doctor was displeased.
“What?” Dr. Bidiwala choked. “The insurance company won’t ‘let’ you? What does that even mean?!”
“Well, we came to see you today so that maybe you could help us talk to the insurance reps. They mailed us a letter three weeks ago, denying our coverage. They told us that Kyle’s brain tumor was a ‘pre-existing condition.’ They won’t help us. We’ve been calling for weeks, trying to figure things out with them. Pam has been trying to negotiate, too. But they laugh at us. They refuse to pay.”
I pictured the previous weeks, screaming bloody murder at the insurance agents:
He was born with the tumor! Born . . . with . . . the . . . tumor. Pre-existing? Do you mean in his mother’s womb? Should we have filed the claim when he was a fetus?
You have no heart. The tumor is too big now. It’s crushing his brain and he’s going to die. And I’m going to tell everyone that your stupid insurance company killed him. You didn’t want to pay for surgery, so you killed him.
When you’re burning in hell, I hope Satan tells you to call this company for medical care.
(Okay, so I was too chicken to say the last line, but it did cross my mind, definitely.)
We recounted to Dr. Bidiwala the insurance company’s heartless offer: We could check back next year, to try our luck after new legislation was supposed to kick in. Maybe the new health laws would help us. Of course, they might work against us, too. Who knew? Who cared? It was just Kyle’s life at stake. Nine months from now, in January 2014, we would have the privilege of once again begging the insurance company to help us. That, claimed the insurance company, was our greatest option.
As we painstakingly outlined our injustice to Dr. Bidiwala, I swallowed to keep from getting emotional. No more tears. Not at the doctor’s office.
“I can’t believe it. I don’t understand,” said Dr. Bidiwala, wringing his hands. But then he looked up at us with pure and wondrous confidence. “We can fix this,” he nodded, motioning towards the door. “Come with me.”
* * *
There are few happy memories that bring immediate tears to my eyes. But one is the moment when I beheld the most beautiful woman I have ever seen: Dr. Bidiwala’s secretary, Tammy.
Tammy was strong. Tammy was loud. Tammy was mean as hell when it mattered like hell.
The secretary’s features melted as we told her about the insurance company’s cruel treatment towards us. Then, her face hardened into the most gorgeously ferocious expression imaginable.
I will never forget the words that came roaring out of Tammy’s mouth:
“That insurance company won’t tell me no, and if they tell me no, I’LL MAKE IT A YES!”
Tammy exuded a level of determination that I have never encountered in any other human. I was awed, inspired, and really goddamned jealous. To me, she was a glorious dragon, breathing fire across life’s path, the flames destroying all evil-doers: murderers, thieves, con-artists, and uncooperative insurance agents.
Before we could respond to her outburst, Tammy was dialing the phone with record efficiency. The mission had been accepted, and she was no longer in a conversation with us. Dr. Bidiwala, Kyle, and I casually eyeballed each other, waiting.
“Well…we’ll…call you tomorrow and let you know how it goes,” Dr. Bidwala finally assured us, leading us out of the room. I looked back at sweet Tammy, who was foaming at the mouth. Vicious words were annihilating the eardrums of a terrified insurance representative on the other end of the phone line.
Beneath the unflattering fluorescent office lights, Tammy glowed like an angel.
* * *
The very next day, we got the call: The insurance company had finally agreed to cover our $80,000 surgery. What a magnanimous change of heart. Glorious Tammy! Tears were streaming down my cheeks before I even hung up the phone.
I cannot be held accountable for my subsequent actions.
“F*CK YOU, F*CK YOU, F*CK YOU, F*CK YOU!” I screamed, as I tore our tear-stained insurance rejection letter into tiny pieces and threw them on the kitchen floor. “You eat shit! I hate you for doing this to us! I hate you, I hate you, and F*CK YOU again!”
I stomped on the paper shreds. I sat down on them. Then I lay across them.
My pug, Tater, wandered over to inspect my lifeless body. Several snorts erupted from his flat snout, and I had to laugh. The poor dog was sniffing me helplessly, assessing my heartache. I didn’t move or open my eyes. After a minute, Tater joined my uncomfortable floor nap, resting his chin on my elbow.
Soon enough, I brushed myself off, and gathered up the paper. Staring down into the trash can, I dropped in the scraps and tried to catch my breath.
There I stood, resurrected from months of grief.
My eyes darted up involuntarily.
“And thank you, God,” I sighed. “Before I forget. Amen.”
Even my tear ducts hurt.
Later that night, Kyle, Tater and I joyously booked the operation for the next month, on June 25, 2013. No one slept a wink, and it was insufferably blissful.
* * *
After Kyle woke up from surgery, he looked like a less-than-fresh corpse. As soon as I saw what appeared to be his carcass, I hurtled my body towards the hospital room window and held my pulsing stomach.
Oh, no. My gut had flipped inside out.
Maybe I have a weak stomach, and maybe my brain was jumping to the worst possible conclusions, but in my recollection, Kyle was a totally believable zombie: A gray-faced, bloody-nosed, dead-eyed, card-carrying member of the walking dead.
I took slow breaths and gulped a few times. Not the time for nausea.
Our friend Jason stood at the foot of Kyle’s bed. Only two visitors at a time were allowed in the recovery room, and we were the very first. I could only look at Jason, whose eyes welled silently. It felt like no one in the room was breathing.
“Kyle, wake up.” The nurse’s voice broke through the dead air. “Wake up, Kyle. You have visitors here.”
The frightening body refused to stir, and I was fine with that. I shuffled to the side of the bed to inspect his face. Ooh. Too close. A misshapen patch of blood had crusted, black and ghastly, underneath the bandage swaddling his nose. Once again, I winced and turned away.
“We can’t clean off the blood,” explained the nurse. “He’s got to keep it there for a few days. Sorry, but no one can touch his face.”
“When can he talk again?” I asked.
Kyle’s hand shot into the air.
My mouth dropped open.
“Kyle? Kyle, are you awake? Can you hear me?” I was yelping amid gasps.
The hand stayed suspended, waiting. No other parts of the body so much as trembled. I grabbed Kyle’s hand and held it. The giant palm and fingers squeezed mine. My watery eyes met Jason’s shocked expression.
Kyle’s hand squeezed soulfully for a moment, and then dropped back to the mattress.
He had heard my voice and found a way to make his body respond. That was all the reassurance I had longed for in that moment: Kyle’s cold, dead body was really warm and alive.
To this day, Kyle has no recollection of grabbing my hand.
* * *
“Is . . . my head shrinking?”
Two days later, Kyle was half-awake and asking hilarious questions.
I mean, the guy was probably right: His head was undoubtedly shrinking from the inside, since a golf ball of pressure had been removed. Even with his limited energy, Kyle was making some pretty astute observations. Among some of his most adorable questions were:
“Has it started yet?” (Yes, he was referring to the surgery.)
“Does my face look different?”
“Can I go back to work now?”
Asking cute stuff helped, because Kyle was physically not back to cute status yet. The moment he had finally opened his eyes, they looked as gray and scary as his tired skin. I still feel like I was the most disturbed out of everyone when it came to Kyle’s appearance. I knew he was “fine.” But the color was gone from his eyes and skin, and I did have trouble believing he was alive. I had feared death for so long.
Miraculously, Kyle could walk a few hours after the surgery, as soon as evening hit. This fact provided one of my few comforts: Kyle could go to the bathroom by himself. So, even while he struggled for words, my patient could occasionally muster the energy to walk down the hall to the restroom, which also really helped confirm for me that he was indeed a living creature, and not a decomposing member of the “undead” community, as I might have otherwise guessed.
On Saturday, five days after the surgery, Kyle was released to come home. The Methodist hospital was closed on Sundays, so all patients had to leave before then. The weekend that Kyle returned home was one of the longest weekends of my life.
All seemed well at first. An exhausted Kyle stumbled into his downstairs bedroom and went to sleep. We had a makeshift room set up on the first floor, so that Kyle didn’t need to climb the staircase to get to bed. My mother was staying with us, so I did not have to supervise Kyle entirely by myself. Also, Kyle’s family had created an online meal plan so that friends and relatives who lived in town could bring us dinner each night. The setup was nice. If only Kyle hadn’t become anal retentive.
Yes, Kyle refused to poop. This post-op constipation, funny as it sounded, had the potential to become quite dangerous after a few days.
Even though Kyle had been taking medication to promote “movement” for the past week, his digestive tract had not yet cooperated. Now it was Sunday, almost twelve hours past the official poop deadline. That meant Kyle needed to pack a more powerful punch in his bowels, and with oral treatment proving ineffective, it was now time to upgrade. To rectal supplements. Oh.
But . . . who ever could administer the colonic?
I was pawning this crappy responsibility off as fast as flushing possible.
“Kyle, today is the day you have to poop, or you’re going to be hospitalized,” I urged in gentle desperation. “And I know it sucks, but you have to give yourself this enema. Doctor’s orders. There’s no more time to wait.”
But alas, Kyle was not a compliant patient. He was finally cognizant enough to form opinions, but still far too fuzzy to apply logic. So, my attempts at persuasion were met with clenched cheeks.
Recording artist Meatloaf once famously sang, “I would do anything for love, but I won’t do thaaaat!” And now I am positive Meatloaf was referring to the boundaries one must set when being tasked with administering a partner’s butt medicine. I will definitely not do “thaaaat.”
After an hour or so of arguing with Kyle, I dialed Pam to beg for help.
“Pam! Help! Pam, I need you to talk to Kyle. He won’t poop.” Maybe Pam could talk some sense into Kyle. He couldn’t reject advice from the lady who had saved his life.
“Ha, ha! Oh, no. That’s serious.”
“He doesn’t want to take the enema. I think he’s embarrassed or something.”
“Okay. I get it. Just put me on speaker, and I’ll talk to him.”
I walked towards a bleary-eyed Kyle, my iPhone pointed at him like a crucifix.
“Kyle, Pam is on the phone and she says you have to poop!” I stood confidently. Somehow, Kyle’s bedraggled countenance grew a few shades more sullen.
“Kyle?” called Pam through the speaker. “Kyle, you need to take the enema. You haven’t pooped in at least five days. If you get constipated, you will have to strain your body to poop. If you strain, your brain will burst open and start bleeding.”
Well, that was interesting news. My prior concern had just been over Kyle’s potential to develop a severe stomachache. So, I could add “risk of a ruptured brain” to my list, huh?
Kyle didn’t respond to Pam.
“Are you going to do it, Kyle? Can you listen to Pam? Your brain is going to explode.” I was incredulous, and staring Kyle down with corresponding force.
“I feel fine,” he insisted, closing his eyes. “I don’t need to poop. I’m okay. I’ll poop tomorrow.”
“Kyle! No, you have to poop today. Right now. The time to poop is now.” Dr. Pam was on it.
I saw Kyle’s face darken, and his eyes zoned out. A sort of drug-induced pout.
Pam had won.
“Fine,” he mumbled. “Fine. I can go poop.”
I handed Kyle an uncomfortably large pill and hurried off, wishing him a solid success.
* * *
A few hours later, Kyle ran out of pain medication.
This shouldn’t have been a problem, because we had of course received Kyle’s prescriptions when he was discharged from the hospital.
What would have been nice was if the prescriptions hadn’t been written incorrectly. Out of four medications, the pharmacist would only fill two. Unfortunately, one of the missing prescriptions was Norco, the most important, by far: Kyle’s painkillers.
And Kyle was quite vocal when the pills were wearing off. Usually a couple hours before his next scheduled dosage, he would start to wince and writhe and ultimately warp into a shrieking mass. His skull throbbed and pulsed relentlessly, a sensation he could only later describe as “the worst pressure ever.”
Watching Kyle, I thought to myself, This is embodiment of the term ‘agonizing pain.’
For both of us.
I called around like mad. The hospital was closed. The doctor’s office wouldn’t answer. Pam didn’t answer.
“Oh, God,” I panicked. “Oh, Mom. Oh, God.” I paced frantically around my patient mother. “Mom, the pharmacy closes in less than an hour. I’m going to call 911. Oh, God. Kyle is in pain and he’s not gonna make it much longer. We’ve got to go the hospital. Oh, my sweet Lord.”
I was so tired of crying, but my tears were as bottomless as my frustration.
Curling up on the sofa, I sobbed into a pillow.
“Mom,” I gasped. “Mom, help me.” There’s no more oxygen in the room.
“Lauren. Lauren, we’ll figure it out. We’ll give it thirty more minutes, and call 911 after that,” my Mom reassured me. I don’t know how she was still standing. And making sense. With my commencing meltdown, Mom really had two sick patients at that moment in time. A couple of grown adults whose brains did not work.
I breathed, staring into nothing. Just waiting to call an ambulance. I am not helpless. I am okay. I am not helpless. I am okay.
At 5:41, Pam called back.
“Holy shit, Pam! You gotta help us. They wrote the prescriptions wrong. We can’t get our drugs. The pharmacy is about to close. We can’t reach any doctors. Kyle is freaking out and is starting to hurt really bad. Oh, my God, we have twenty minutes! Holy shit, help us!” I’m sure Pam was accustomed to neurotic phone calls from me by now.
“Oh, no! They wrote the prescriptions wrong? You are kidding! What is wrong with them?! Okay . . . no problem, no problem. I’ll call everything in to the pharmacy right now. What do you need?”
As I gave Pam the information, I motioned to Mom to start driving to the pharmacy. My mother called the pharmacist as she ran to her car, pleading with her to stay open until 6:05, just in case she didn’t make 6:00. Soon after, Mom returned with Kyle’s medicine.
“I made it at 6:01!” Mom grinned proudly. “They stayed open for me! The pharmacist was waiting for me, and she was so nice. I made it! We did it!”
Mom and I hugged, sighed, and then sprinted into Kyle’s room with the drugs.
My head was pounding, my throat was sore, my heart aching through each beat. My ears reverberated with my pulse, echoing the slow, steady thuds. I passed out on my couch for a couple hours without meaning to. I was spent, empty, burned up and out of coherent thoughts.
When I woke up, I looked into the mirror, and my reflection was more than just a little ugly. My face was a splotchy oil slick, my eyes were black and ballooning, and my hair was a jungle of wayward afterthought.
This had been my first full day taking care of Kyle at home. It felt like a disaster. Both times I got stuck, Pam had to rush in and rescue Kyle. I couldn’t even handle this for 24 hours. Should I ask Pam and her husband to move in with me? Or should they adopt Kyle?
Seriously, what fresh hell could tomorrow bring? I was running low on ideas for how to fashion my life with a more complex and drama-infused flair. But luckily, it soon dawned on me that besides my empty brain, hideous appearance, and neurotic emotional state, I indeed needed to tackle one more enormous problem:
The next day, I had the most important job interview of my life.
Would anybody hire a college professor in this condition?
* * *