Jennifer, now 29, was diagnosed with lung cancer at age 21.
Silent Breathing
By: Jennifer Renak
It was after I got mono two summers ago that I began to hear a light popping noise every time I took a breath at night. It was kind of like the sound of a hollow bubble bursting, echoing from inside my body. I knew it wasn’t normal, and I hoped it would go away. Summer ended, I went back to school, but the echo didn’t go away. It got louder and was sometimes followed by a rattle. It felt like something inside of me kept sticking together and popping apart. It felt weird.
Then I began to develop stress headaches in the back of my head. There were two areas of pulsating pain at the base of my skull that would surface suddenly, last for a few moments, and fade away. It felt like someone put hot coals inside my brain. And every now and then, when I took a deep breath, a raspy wheeze was heard as I inhaled and exhaled. My friends actually joked with me about it saying stuff like, “Look, you really need to quit smoking,” or “Should I get you an oxygen tank?” But I didn’t smoke. My mother said it was most likely asthma induced from mono, and since she’s a nurse I believed her.
Winter set in and I felt worse. I started going to doctors and was treated for asthma, but it didn’t seem to help. Spring semester I was constantly sick. I got a cold in February that never went away. I’d sit in class, and every time I took a breath it was loud and raspy. I couldn’t keep quiet and I was beginning to draw attention to myself. The stress headaches got worse. Inhalers did nothing. I was always tired. I underwent a specialized test to confirm asthma and it turned out I was a borderline case. My doctor was stumped. Rather than continuing asthma treatment, he scheduled me for a test known as a bronchoscopy. This was when they found the tumor.
Having the bronchoscopy was terrible. The nurses made me inhale a vapor that tasted terrible and numbed the back of my throat. It made swallowing difficult and caused me to drool. Then they stuck this clear jellylike substance up my nose and told me to inhale. It felt like two slimy worms were snaking through my face. Finally, I was given an IV and a sedative. A camera was inserted through my nose and down my throat to take a picture of my lungs. They didn’t give me enough sedative to fully relax me and the lidocane vapor made me choke because saliva kept running into my lungs. When the camera was inside I did nothing but cough. I was supposed to be asleep, but I wasn’t. It took two nurses to hold down my legs because I kept flailing and coughing. I remember them saying “Jennifer, you have to calm down. Jennifer you have to relax.” And I thought to myself. Relax, yeah right. All I could do was cough, a deep dry heave type cough. The worse part about the entire experience was that I heard them say the word tumor. I heard the word tumor and I heard someone say in a frantic voice, “Go get Dr. Walker!” I felt a nurse run away. I heard “Don’t biopsy it, it will bleed” And then nothing. I finally passed out. When I woke up about twenty minutes later I was alone. The camera was gone. The procedure was over. My throat hurt. No one had to tell me what was wrong with me. I already knew. I had heard everything. I had a tumor in my left lung. A growth that was feeding off of my body’s nutrients, growing strong while I grew weak.
I went into shock and thought to myself, a tumor? Did he say tumor? I couldn’t have a tumor. They don’t happen to healthy people. They can’t just come out of nowhere. There always has to be a cause, like chain smoking for years, or inhaling dangerous chemicals. But I was wrong. Sometimes they just happen and as of now, no one knows why.
I had what is known as a carcinoid. A tumor of which there are three types: the typical carcinoid, the a-typical carcinoid, and the malignant carcinoid. According to my thoracic surgeon they are all considered cancer. Typical carcinoids are slow growing. Nine times out of ten they remain self contained where they start. A-typical carcinoids generally spread to the lymph nodes and can result in other cancers, while malignant carcinoids are vigorous growers and can spread quickly. Since mine was typical, the prognosis looked good, but I was still terrified because it meant serious surgery.
I found out on April 19, 2001 and my operation wasn’t scheduled until May 24th. My doctor told me there was no reason why I shouldn’t finish the semester, so I had four weeks of school with this news sitting in the back of my mind, and school was five and a half hours away from home. I was relieved to finally know what was going on, but I was miserable. I didn’t know how to tell my friends. I knew they wouldn’t know what to say. I looked completely fine. It seemed unreal that I had cancer. I felt vulnerable, like people would somehow look at me and think I wasn’t normal. And no one understood. So I did what most of us do with traumatic news. I blocked it out. Each day I went to class, did my work, and tried not to think. I didn’t talk about it much and went on pretending that things were normal. Only they were not normal. Every now and then, while I was walking to class, or sitting in my room, or typing a paper I’d lose it. I’d start to cry. I’d think it was unfair. I’d feel sorry for myself. After about ten minutes I would pull myself together and calm down. I kept telling myself that I just needed to pick my head up and keep moving forward. There was nothing I could do. Dwelling on it didn’t help.
But a few nights before my operation, back at home, I lay in bed and couldn’t sleep. I kept thinking about what my doctor was going to do to me and got really angry. I started crying so hard my stomach clenched. I went to the bathroom and sat on the edge of the tub. I remember how cold the tub felt through the fabric of my pajamas. I sat there blowing my nose on toilet paper and throwing it into the toilet thinking about all of the gory details of my operation.
I was going to be sliced open on my back from the base of my left shoulder blade down in an arc to my side. A one inch section of one of my left ribs would be cut away and the rib would be pulled aside to gain access to the lung. The lower lobe of my left lung would be removed, and then I would be put back together. The doctor called it a sleeve resection. He was going to take half of the lung and then sew together the tube from my trachea and the tube from the remaining portion of lung, reinforcing the stitches with fat from my heart. This man would witness the beating of my heart. My doctor was going to become more intimate with my body than even I was, and I felt he had no right. I didn’t trust him. It wasn’t fair, but I had no choice, because as I sat there and cried that night, I breathed. And it was the same raspy intake of breath I’d been hearing for months. I felt completely helpless. I wanted to claw at my skin and breasts and rip it out. I knew exactly where it was, directly under my left breast, right next to my windpipe. I had seen the CAT scan, a 1.8 cm ball of cells that was almost entirely blocking my airway.
Not only was I losing half of my lung, but part of my rib. That one inch section of rib was not being put back. They were being taken from me and I would never get them back. Life would go on with out them. I knew that. But that night in the bathroom this didn’t matter to me. You never think you have a relationship with all of you until you are not whole anymore. And I felt as if I wouldn’t be whole. And I felt as if I would never wake up. And there was nothing I could do about it because if I chose not to have this operation, the vile growth would only grow larger until my entire airway was cut off causing my lung to collapse, or even worse, the tumor to spread to other parts of my body. After about two hours of going over every explicit details of what would occur, I eventually went back to bed. Afterwards, the last few days before surgery were uneventful. I had finally accepted what needed to happen.
On the morning of the surgery, my family had a hell of a time leaving my house. My mom wouldn’t leave her room until she was satisfied with her makeup. I guess everyone was dealing with this is his or her own way. My sister and her fiancé had flown in from Michigan and were staying with my brother and his wife. They were going to meet us at the hospital. My boyfriend had spent the night at my house and he, my parents, and other brother were all going over together. The entire ride my boyfriend just held my hand while I looked out the window. The two of us were never that quiet.
We got to the hospital at 6:15 a.m. and I went directly to the prep room. There was no time to say goodbye. I was asked to change into a hospital gown and then sat in this big black chair covered with warm blankets while the prep nurse kept asking me how I was doing. My parents, eldest brother, and boyfriend were allowed in to see me for a few moments each, but there wasn’t much to say. My body was a coil of tension. As I was wheeled down the operating room, tears streamed silently down my cheeks. My sister walked beside the gurney for a few seconds and squeezed my hand. My eyes were wide and unblinking. Frozen with terror is an expression I had seen used, but never fully understood until that morning.
I never saw the inside of the operating room. The anesthesiologist drugged me as I waited outside in the hallway. My parents were with me and afterwards my mother told me that as the anesthesia took effect you could see my face visibly relax.
Five hours later I was in recovery. My doctor warned me that I would have tubes galore coming out of my body when I woke up and he didn’t exaggerate. I had two tubes in my side coming out of my chest cavity, a tube in my nose for oxygen, a tube in my back for an epidural drip, and a tube in my bladder. For a month prior to the operation I had thought about it and cringed. Tubes and I were not friends. But strangely, waking up with all of them inside of me wasn’t that scary. I was so drugged on morphine that I couldn’t really feel them, and I was more concerned with the intense itching all over my face and eyes. Even my eyeballs itched. Sometimes when the dose of morphine is exceptionally high it reacts with the surface of your skin and makes you itch. I felt like a thousand tiny feathers were being swept across my skin simultaneously and I was so swollen and weak that I couldn’t even lift my arm to scratch. My right wrist was strapped to a big block to keep it positioned for the IV and my left hand was hooked up to an oxygen monitor and a blood pressure band that checked my blood pressure every 15 minutes. My legs were encased in two air casts that inflated and deflated every few minutes to keep my circulation active. I couldn’t see a thing because I didn’t have my glasses on. I lived in a fuzzy itchy tube filled uncomfortable world.
My uncle works in the hospital as a respiratory therapist so he was allowed to see me in recovery and stopped in as soon as I was awake. He came over to the bed and started teasing me about how sexy I looked. In my half asleep swollen stupor I flipped my middle finger at him. And when he told my family about it they all knew I was going to be okay. Jenny was back. My mom told me later that from that point on she was able to relax.
In the hospital I couldn’t do anything for myself. I needed help to eat, help to use the bathroom, and help to walk. I had visitors almost every day, and since I had a private room, my mom stayed with me the whole time. She slept on a cot and went home for a few hours every afternoon to shower. I was glad she stayed because I felt safe when she was there.
At first, I had an epidural in my back with a consistent morphine drip so I didn’t feel much pain, but after two days the epidural fell out, and I received medicine through and IV in my arm. Every eight minutes I could push a little button and get a consistent dose of Demoral, a morphine derivative, shot into my system. This was convenient because I controlled the dose myself, but it was inconsistent, and every 12 hours or so the nurses needed to find a different vein to stick the IV in because my vein reacted to the Demoral. Whenever I pushed the button, it felt like my vein was getting shot with hot oil. Most of the time, my left side felt like it was being squeezed between a large metal vice. The mere process of sitting up in bed was exhausting. I only slept for an hour or so at a time. Whenever I woke up I was so stiff and rigid I felt like I was wearing a full suit of armor badly in need of oil.
After a few days on Demoral, I ran out of veins for the IV, and the doctors decided to try oral medication. That didn’t agree with me either. My arms were relieved from the painful heat, but the oral medication gave me horrid dreams. In one dream I watched a madman shoot people up and down a street at my college, and I felt myself throwing up something pink that tasted terrible only to wake up and realize I was extremely nauseous. The doctors changed the narcotic hoping my unsettled stomach would get better, but it didn’t help. I was in a perpetual state of nausea for days, and vomiting was extremely painful. Eventually I was switched to ibuprofen and just dealt with the pain. It was better than constant sickness.
When I first came home, I went through phases where I felt perpetually stoned as my body healed, and things around me would suddenly and without warning begin to look distorted. Getting better wasn’t bliss. It was a slow and frustrating process.
At first, small victories for the day consisted of getting dressed and making my bed. Eventually that translated into trips to the supermarket in the evenings with my dad, and a daily visit to Blockbuster.
The human body is a lot more resilient than I gave it credit for. The lungs are like little paper thin balloons that expand and contract in a bed of fluid in the chest cavity, and people have a lot more lung capacity than they actually need. When part of one lung is removed four things happen: the windpipe and heart move over, the chest cavity shrinks, the diaphragm moves up, and the remaining portion of lung expands. I watched this process happen in the progression of chest X-rays in the weeks following surgery. In each successive X-ray, what remained of my lung was a little bigger than it had been in weeks before. It was pretty cool.
As I returned to normal, I would describe small details in my journal with wonder, like how the branches of the trees in my back yard played in the breeze, or how my cat looked lying under a tree in my neighbor’s yard. I took pictures of my front porch and the tree across my street because they intrigued me. I went to the town parade, sat in the front seat of my mom’s car, and cried, simply because my whole neighborhood was sharing a moment together watching the local volunteer fire departments and bands pass by. To me, it was beautiful. I felt completely connected to the physical world, like I was a part of everything, and everything was a part of me. And all that mattered existed in the present moment.
Emotionally things were rough for awhile because I didn’t know how to talk to people anymore. I never went to a support group to talk about my experience, and it was as if this experience had left me socially inept. It seemed many people didn’t think my cancer was all that serious because I didn’t need chemotherapy. If I didn’t lose my hair the cancer wasn’t a big deal. This pissed me off because it made me doubt the validity of my illness and I shouldn’t have had to do that. When people asked me what I had, I wasn’t sure it I should tell them cancer. It was caught in the early stages, and even doctors argue as to whether or not typical carcinoids should be considered cancer because they almost never come back and usually remain self contained where they start. But the bottom line is, they can come back, and even though the chances are small, if a tumor can regenerate, the prognosis is cancer.
It wasn’t until the end of the summer that I felt like I had beaten it. In the course of my recovery, I was made to accept a simple truth. I am going to die. One day I am physically going to die and I can’t change that. I came to grips with how things happen in life that people have no control over. I learned that I’m emotionally stronger than I thought. I fell in love with my hair. I was lucky, but for others I realize it isn’t that simple and they aren’t as fortunate. I empathize with them because I know it is hard. But at the same time, as I take a deep and silent breath, I can no longer dwell on it. Because even though I know I am one day going to die, I still have a lot of living left to do. And all that I can count on is right now.