I don't think I have to explain to anyone that having cancer and undergoing chemo is an emotional time for everyone involved. What I do want to emphasize are the emotions that remain hidden below the surface. There is a nasty, horrible, and stressful underbelly of cancer that always seems to get sugar coated to help calm peoples' fear of cancer. However, it doesn't do justice to the struggles and hardships that we, as cancer survivors and cancer fighters, have to endure. And what we endure is ugly. Even if we seem cool, we're terrified. What we don't tell you, is for your own good. We suffer from the human nature that when something is out of your sight, it gets put out of your mind. I hope that this will help someone going through treatment, as corny as it sounds "you aren't alone"
LATE NOVEMBER - 2009
Being in a hospital bed was more foreign me than anything I'd ever encountered. After being hastily diagnosed by the Emergency Room doctor, Car outside calling in reinforcements, I had a few moments to be by myself. The dilaudid was running through my veins finally providing me some relief from the piercing pain on the left side of my back. It also had my head spinning. "What is Lymphoma?" I asked myself, probably out loud. I had a million other unanswered questions as the doctor had hurriedly exited the room after telling me that I “likely had some form of lymphoma." I immediately thought of Carley. I was going to miss her so much. "Am I going to die? If so, how long will I live and what should I do with my remaining time?" I wished I hadn't sent Carley out of the room. She always had a way of calming me down. "God, I love her!" I thought. I pictured her, dressed in black, sobbing at the side of my casket surrounded by my family and friends doing their best to comfort her. At least we are young and she is beautiful, I thought, eventually she should be able to move on and find someone else. Our love story had began when we were just 16 and 17 years old so hopefully she wouldn't be too far behind her other friends her age who would be getting into relationships and starting families. I began to cry at thought of someone else getting the future I had planned with Carley. It broke my heart and I had to put it from my mind quickly to keep from bursting into a waterfall of sobs.
My second thought was of my Grandma. It was now the first week of December and it had only been about 5 weeks since we lost Grandpa to cancer. Clearly being the favorite granddaughter, how would my grandma cope with my imminent death? I became enraged at the universe for being so unfair to my grandmother for taking Grandpa and I away from her. I couldn’t bare the thought of the stress and greif that would no doubt haunt my Grandma. The last time I spoke to Grandpa, a few days before he died, he had said to "make sure you take care of Grandma." If I only live 6 weeks after Grandpa, I would have very little time to make good on that promise.
I knew right away that these types of thoughts weren't going to help this situation and I would spend the coming months constantly forcing them to the back of my mind. I can recall a few desperate times during chemo when I found myself consumed with these thoughts and it would blanket me in depression for a few days at a time.
At first, (mostly due to the effects of the pain killers I was doped out on) being in the hospital was a veritable wonderland. It was completely new to me and everyone was so happy to see me, help me, and push me around in my bed. This proved the one perk to having several tests and procedures done. I got tucked in with fresh warm blankets, sheets, and fluffed pillows then personally escorted from room to room without ever getting out of my bed.
Anyway, I lay in the emergency room and closed my eyes to stop the spinning. I'd never been on pain killers before especially via IV considering I'd never had an IV either. I liked them. I liked them a whole lot. I would also attribute my low anxiety level at this time to these beautiful pain meds as well.
I was finally rejoined by a transporter (at least that is what I called him.) Over the next six months, I will meet close to 100 nurses, doctors, surgeons, medical assistants, transporters and other hospital staff but it was this first transporter that I remember with the most amount of detail. He was young, around 27-30 years, tallish with dark brown Justin Long hair. He had light green eyes and a very comforting smile. His frame was lean but his arms were strong and his scrubs were tight across his muscled chest. He introduced himself and confirmed my birthdate.
"That's a half full/half empty birthday," he said. Seeing the confusion spread across my face, he continued, "some months it cuts the month right in half and the other months it is more to one side. Oh, wait. The 16th? I thought you said the 15th. Nevermind. Your birthday is boring."
I wanted to kiss him. Not because I was interested in him romantically but because he was able to make me laugh enough to pull me out of my own head and back to reality. It had been the first smile or glimpse of happiness I'd experienced since my doctor's under sensitive, crude delivery of my diagnosis an hour or so prior.
We chatted and laughed all the way up to the 5th floor. It seems silly to say this but he helped me realize that staying positive and using humor was going to be the only way I could cope with this stress. We rolled past room after room of hospital stayers on the cancer floor. I peeked in as many rooms as possible to see what my fate might hold. There were several elderly patients; in fact, I was told on this occasion (and several others) that I was the youngest patient on the floor. They all looked half-dead, thin skinned, sunken eyes and it frightened me quite a lot. Finally we pulled into my parking spot, a large room on the left of the nurse’s station. I wouldn’t learn this until later but the most coveted rooms on this floor were directly correlated to their location to the nurse’s station. You were very unlikely to get forgotten and almost always receive the most attentive care.
The room was fairly inviting. There was plenty of space in the room. Other than my bed, there was a small recliner to the left of where my bed was parked that doubled as a cot. Though the option seemed optimal to sleeping on the cold, hard, tiled floor, it hardly constituted a decent place to rest.
I was greeted by a bubbly nurse almost immediately. As she read my charts and questioned me about my situation, pity quickly filled her words and facial expressions. "You had no idea you were even sick until just now?! You are so young. My son is 23 and I can't imagine how scary that would be. God bless ya, honey. Let's get ya a little more comfortable. How is your pain?"
The initial meds I'd received in the ER had in fact started to wear off and had started piercing me from the back again. "It's not great," I said, partially unaware of how to answer this question.
Pointing to an amateurish drawing of smiley and sad faces on what appeared to be some sort of time line, she asked "Which one of these faces accurately describes your pain level?"
"The one that looks like this," I said, attempting to scrunch my forehead up and stretch my lips into a sideways frown to match the drawing. She laughed hysterically for a moment and thanked me for being in such good spirits, considering all the news I was dealing with. I told her I was being serious which only caused her to laugh out loud a few more times.
"Starved for entertainment?" I thought, given the response to my sub par humorous response. This wasn't anywhere nearly my best material and thought I could very easily win over these nurses if that was all it was going to take. At this point, I was assuming I would be one of the bodies I rolled by on my way to the room; chained to a bed, tubes sticking out of me, barely alive. I figured if this was to be my life, I would get the nurses to favor me, resulting in the least amount of time possible sitting in my bed with a dirty diaper or something equally as undesirable.
I told the nurse on a scale from 1-10 my pain was probably at a 4 by now. She wheeled in the IV pole (I did not know the proper name for this at the time) and began to explain my pain control regiment. Thankfully Carley reentered the room at this time to serve as my memory.
She explained, "This is a PCA or patient controlled analgesic. This means that you will be able to administer your own pain medicine as needed. This large syringe is filled with multiple doses and you can have 1mg of dilaudid every 15 minutes as needed. We will be monitoring you very closely to make sure that your heart beat and blood pressure do not drop too rapidly. It will make you sleepy and loopy but it should kill the pain pretty effectively. "
She grabbed a syringe that was about 4 inches long and about an inch in diameter. It was loaded into the PCA which slowly pushed out the pre measured amount when I pushed my red button. I immediately pushed the button and found some release from the tightening pain in my back. 15 minutes later, Carley took her turn with the button. 15 minutes later, my turn. 15 minutes later, sleep.
When I woke back up, I have no idea how much later, there were a few familiar faces in my room. The first person I remember was Jacqueline, Carley's mother. Our relationship had not been a friendly one to put it nicely. Since Carley and I came out to our friends and family, we struggled with acceptance from each of her family members. In fact, it was Carley's mom's strict rules around when we could see each other that practically gave us no choice but to move out just two short weeks after Carley's 18th birthday. I had wished to see someone who would offer me a little more comfort but she was clearly comforting Carley which actually seemed more important at that exact moment.
They immediately realized I had slipped back into consciousness, stopped conversation, and walked toward me. I looked to Carley for a kiss but she inconspicuously nodded toward her mother, signaling that a kiss was not in the game plan. I resented that but was too weak and disoriented from the medicine to pose any argument. After updating them both about how I was feeling and what face represented my pain level, a nurse entered my room.
Bjorn was tall with short, wavy dark brown hair giving the appearance of being unkempt. He sort of resembled Matthew Bomer from White Collar except he wasn’t as well groomed. He had a short goatee that was trimmed crooked across the top of his lip. This bothered me a bit but he was so nice and I was so drugged that I hardly cared. He helped me out of my bed and took my weight. Embarrassing.
“274 pounds,” he said, and it seemed to echo throughout the hallway. I’d gained a lot of weight during the three years since graduation and it was still a sensitive subject for me. He asked if I needed to use the restroom. I did not. When he said it, It seemed strange that my answer was no. I had been in the hospital for several hours and for some reason, had no urge to #1 or #2. I crawled back up into my bed and hit my pain medicine again. The effort of standing up to weigh myself had been fairly draining so I found myself drifting off again.
When I woke up, Jacqueline had been joined by Tom, Carley’s dad, Leslie, her sister, and Grandma. Tom and Jacqueline were speaking to one another very seriously. (Note: I would later find out that they were discussing how to get my COBRA insurance started because it required a significant down payment. I had recently been fired from my job leaving me without insurance.)
I lay awake unnoticed for a while. I guessed that Leslie and Grandma had only recently arrived because Carley seemed to be bringing them up to speed.
“She is definitely a little out of it…” was about all I could hear her whisper to them. She turned toward me and her beautiful smile lit up her face. Regardless of how terrified I was at having absolutely no clue what was happening to me, her smile instantly calmed my anxiety. Grandma and Carley walked over to either side of the bed.
“Have you ever seen one of these?!” I said, gesturing toward my paint pump. Leslie suggested that my pain pump button resembled something that astronauts would use to launch rockets. I agreed with her saying “Oh it launches rockets alright!”
This quickly turned into a game. Because I was in such severe paint at this time, I required every dose of medicine I could get. I was counting down the minutes until I could push the button and feel another wave of relief. If I tried to push the button before the 15 minutes was up, the machine would let out a low pitched noise similar to a game show buzzer.
“Fail!!” I would shout out when I was denied by this machine.
If I pressed the button within the correct time constraints, a different, more welcoming noise would sound, immediately followed by a dose of medicine. Everyone who visited the room was signing up to press the launch button. In no time at all, I realized that my family and friends either took serious pleasure in drugging me or were far more competitive than I originally realized. There were elimination rounds for who was able to time it as close as possible to the 15 minute increment without causing the discouraging buzzer noise that not only denied me a dose of medicine but also blanketed the launch pad operator with humiliation…and shame.
I’ll admit that I was the worst at this game. Because I hurt so badly and usually felt like it was time for more meds combined with the reality that each of these launches represented serious amounts of narcotics entering my bloodstream, it made it very difficult to grasp any concept of how much time had passed. I always got the buzzer. And shame.
As the first day came to a close and I said farewell to all of our visitors, I finally felt the urge to pee. Conveniently, Bjorn reentered the room as the rest of the party was leaving the room.
“I gotta potty,” I said in response to his question, “How are you feeling?” He laughed a little and began to explain the process.
“Your IV pole is plugged into the wall and needs to be plugged in when you’re in your bed. If you need to go to the restroom, unplug the pump from the outlet and wheel the entire pole into the restroom with you. Do not stand up right away. Sit up for a minute to make sure you don’t pass out from your medication. Hold onto the IV pole for support, you’ll probably feel a little weak in your knees.”
It was the first time I’d stood on my feet in over 16 hours and he was right, it did take a moment to stabilize myself. Carley came back from saying goodbye to our visitors and helped me get situated in the bathroom. I felt like Lloyd in Dumb and Dumber when he fills up like 8 bottles of pee when they’re in the Dog Van. After what seemed like half an hour, I was feeling independent so I clutched onto the IV pole, stood up, pulled my drawers up, and took 4 or 5 steps to my right to the sink to wash my hands. As I washed my hands, I looked up into the mirror in front of me.
“Holy Shit!” I shouted. Carley came rushing into the room in response to my outburst to see if everything was alright. The panic-stricken look instantly faded into laughter as she realized why I was losing it.
My eyes were wide open. Not alert either. They were comically large and bulging out of my sockets. It looked like someone had taped my upper eyelids to my forehead and my pupils were freakishly dilated. My actual eyeballs, however, relaxed from the dilaudid, were rolling around in my sockets, sometimes independently of one another. I was frozen with this look. No matter how much I tried to blink it away, I stared in the mirror at myself looking as if someone had just snuck up behind me and scared the living hell out of me. The blinking was both fruitless and hilarious. We laughed together for several minutes and she explained that she had been stopping people at the door to tell them not to mention it to me. Apparently some point in the day, in a half-drugged, half-sleeping state, I had gotten pretty nasty with my mother for making a comment about my eyes looking weird. She spent the day playing interference to prevent any other unassuming visitors who may have fallen victim to one of my outbursts.
“We make an awesome team,” I said to her. She smiled and kissed me several times. I climbed back up into my bed and lay flat on my back. Carley had built a small bed on the recliner next to my bed and lay down. She reached out her hand and I filled it with mine. I fell asleep right away.