When relaying my experience with chemotherapy, I often find myself describing several events as "the worst part." The truth is, I don't think I could pin-point any one particular aspect of chemo that is truly worse than any other.
Imagine for a moment that the symptoms of chemo are a book filled with pages of sagas characterized by strong-willed survivors who overcame horrible and crippling side effects inflicted upon them while undergoing treatment. Turning through the pages would unveil scores of soldiers marching united into the same epic battles, facing off with their lives on the line. Instead of listings of momentous military strikes and combat squads risking their lives in battle, you would find simple, ordinary people achieving the impossible, the fight against death. Anyone who is featured in one of these epics can most likely relate to the chapters that I might write.
I believe that among many, they may include:
- Concurring the Correct Balance of Pain Killers Required to Curb the Mind-Numbing Pain that Consumes Your Body vs. The Amount of Stool Softener Needed to Combat the Constipating Effects of the Pain Killers needed to Curb the Mind-Numbing Pain that Consumes Your Body
- The Epic Failure During the Battle to Overcome Mattress-Saturating Night Sweats
- Breaking the IV: Escaping from the Captivity of the Hospital Bed.
- Overcoming "The Edge of the Bed" on Days When You'd Prefer to Stay in Bed, for the Sun to go Back to Sleep, and Everyone Else in Your Life to Just Leave You the Hell Alone.
- The Struggle of Curbing your Vomit Long Enough to Keep Your Dignity.
- The Battle of Staying Hydrated When Even Water Makes You Vomit Instantaneously....and Repetitively.
So, back to my original point...the "worst" part of chemo. How would YOU rank these among the worst? Well, near the top of the Worst List is the nausea.
The first few cycles of my chemo were a hot mess. It seemed like a scramble to find the right combinations of drugs to keep me even remotely comfortable. The list of "mild" symptoms provided to me by the several doctors and nurses during the week prior to chemo were not going to define my experience with this regiment. As clearly as I have ever remember anything I can remember my oncologist, the day before I started treatment, saying to me,
"I'm sure you've heard a lot of stories about serious nausea, vomiting, and weight loss but this regiment very rarely produces those types of intense symptoms. You will lose your hair but you will mostly just experience engery loss and occasionally it will make you feel nauseated."
I left that meeting feel very optimistic. I didn't realize that keeping that optimism would be the toughest part of the next six months.
Managing my chemo from home was often too overwhelming and stressful for Carley and I. The pain from the chemo drugs was almost intolerable. By day 4 after infusion, I could start to feel the sour tingling of the chemo creeping up my jaw and settling in my neck. The pain could be controlled temporarily but would urgently be followed by an overpowering nausea when the pain pills hit the bottom of my empty stomach. Before I could treat the nausea, my stomach rejected the pain medicine as well as the entire contents therein. It was a vicious cycle that perpetually resulted in me wrapped up in my blankets, curled into fetal position, clutching my stomach, doing anything in my power to keep my mind from the pain running through my veins. I turned the lights off closed my eyes and rocked back and forth like a junkie in detox. Each drop of sweat that poured from every inch of my body felt like chemicals coating my skin and hair, what remained of my hair.
I figured that controlling my vomiting would ultimately fix my situation. If I could keep myself from throwing up, just long enough for the pain medicine to work, then I could keep things from getting out of control and eventually wind down. I cried, yelled into my pillow, and continued to roll around in my bed, attempting to self-soothe myself, when Carley brought over the nausea suppositories I received from the nurse.
I was humiliated that I had found myself at this exact moment. Carley and I had been dating at that time for about 5 year but I didn't imagine this would ever be a part of our relationship. People continued to warn me that cancer and chemotherapy can break down a relationship when a cancer patient has to rely too heavily on their partner. I figured that this was one of those moments. I put it off as long as I could. After she helped me with the suppositories, I lay there, praying that this was the solution. I was hungry. I hadn't eaten in almost 2 days and to be honest, all I wanted was a glass of water.
It did seem to work, whether coincidence or power of suggestion, I went 1 full hour without vomiting. My pain had not decreased but I was confident that I could try again with another round of pills. It didn't work. I immediately threw them back up and hit my head against another proverbial wall. After 6 hours of failed efforts, we called the oncology clinic who urged us to come in right away. My doctor was worried that because I was not able to keep any liquids down and my vomiting was increasing that I may be getting dehydrated.
By the time we arrived at the hospital, I was tired, nauseated, and weak. I sat in the first available chair and Carley checked us in. Almost immediately, a tall, olive-skinned, smiling woman appeared in the doorway and ushered us back. She removed a sticky note with my name on it from a door toward the back of the room and and revealed a small room with a modest bed and two chairs. She put her arm under mine and assisted me to the bed. I laid down and she covered me with blankets. I curled up to try to keep myself warm. Ramona, the nurse that had welcomed me into the room, left momentarily to get supplies to hook up my porti-cath to the IV pole.
The morphine entered through the hole in my chest and lovingly caressed my shoulders, arms, elbows, hips, knees and legs and it spread through body. I took a deep breath and enjoyed the tiny bit of relief I felt. Then, almost equally as immediately effective, came a wave of anti-nausea.
The first few cycles of my chemo were a hot mess. It seemed like a scramble to find the right combinations of drugs to keep me even remotely comfortable. The list of "mild" symptoms provided to me by the several doctors and nurses during the week prior to chemo were not going to define my experience with this regiment. As clearly as I have ever remember anything I can remember my oncologist, the day before I started treatment, saying to me,
"I'm sure you've heard a lot of stories about serious nausea, vomiting, and weight loss but this regiment very rarely produces those types of intense symptoms. You will lose your hair but you will mostly just experience engery loss and occasionally it will make you feel nauseated."
I left that meeting feel very optimistic. I didn't realize that keeping that optimism would be the toughest part of the next six months.
Managing my chemo from home was often too overwhelming and stressful for Carley and I. The pain from the chemo drugs was almost intolerable. By day 4 after infusion, I could start to feel the sour tingling of the chemo creeping up my jaw and settling in my neck. The pain could be controlled temporarily but would urgently be followed by an overpowering nausea when the pain pills hit the bottom of my empty stomach. Before I could treat the nausea, my stomach rejected the pain medicine as well as the entire contents therein. It was a vicious cycle that perpetually resulted in me wrapped up in my blankets, curled into fetal position, clutching my stomach, doing anything in my power to keep my mind from the pain running through my veins. I turned the lights off closed my eyes and rocked back and forth like a junkie in detox. Each drop of sweat that poured from every inch of my body felt like chemicals coating my skin and hair, what remained of my hair.
I figured that controlling my vomiting would ultimately fix my situation. If I could keep myself from throwing up, just long enough for the pain medicine to work, then I could keep things from getting out of control and eventually wind down. I cried, yelled into my pillow, and continued to roll around in my bed, attempting to self-soothe myself, when Carley brought over the nausea suppositories I received from the nurse.
I was humiliated that I had found myself at this exact moment. Carley and I had been dating at that time for about 5 year but I didn't imagine this would ever be a part of our relationship. People continued to warn me that cancer and chemotherapy can break down a relationship when a cancer patient has to rely too heavily on their partner. I figured that this was one of those moments. I put it off as long as I could. After she helped me with the suppositories, I lay there, praying that this was the solution. I was hungry. I hadn't eaten in almost 2 days and to be honest, all I wanted was a glass of water.
It did seem to work, whether coincidence or power of suggestion, I went 1 full hour without vomiting. My pain had not decreased but I was confident that I could try again with another round of pills. It didn't work. I immediately threw them back up and hit my head against another proverbial wall. After 6 hours of failed efforts, we called the oncology clinic who urged us to come in right away. My doctor was worried that because I was not able to keep any liquids down and my vomiting was increasing that I may be getting dehydrated.
(This is a photo from my first re-hydration following my 2nd round of chemotherapy. Carley, always at my side, is finally growing some of her hair back after shaving it in support of my diagnosis.)
By the time we arrived at the hospital, I was tired, nauseated, and weak. I sat in the first available chair and Carley checked us in. Almost immediately, a tall, olive-skinned, smiling woman appeared in the doorway and ushered us back. She removed a sticky note with my name on it from a door toward the back of the room and and revealed a small room with a modest bed and two chairs. She put her arm under mine and assisted me to the bed. I laid down and she covered me with blankets. I curled up to try to keep myself warm. Ramona, the nurse that had welcomed me into the room, left momentarily to get supplies to hook up my porti-cath to the IV pole.
The morphine entered through the hole in my chest and lovingly caressed my shoulders, arms, elbows, hips, knees and legs and it spread through body. I took a deep breath and enjoyed the tiny bit of relief I felt. Then, almost equally as immediately effective, came a wave of anti-nausea.
yep. this pretty well sums it up.
ReplyDeletei'd maybe add a line about the specialists and well trained personnel who can't seem to find a line in. or having a line or port that won't stay viable.
oh, and people who insist on cooking foods that come with an aroma.
especially love the way you captured the over coming the edge of the bed.
keep writing julia. i soak up every single one.