The first week of Chemo was a very confusing time. It was frightening because I had no clue what to expect. Other than my grandpa, who bore his suffering very quietly as stubborn as he was, I'd never even known anyone who had cancer. I had no one to talk to about what was going to happen and how it would make me feel. Not knowing what to expect was more terrifying to me than the Lymphoma that was plaguing my body.
A portacath is catheter that is threaded through the vein until it reaches a large vein near the heart. It is used as an alternative to having to draw blood or administer harsh medications through your veins. It was inserted under the skin and is connected to a rubber marble-sized ball positioned on the right side of my chest about 6 inches below my collarbone. To draw blood or to infuse the chemo, a special IV needle is inserted into the rubber ball through the surface of the skin. This is an easy solution to IV's and Chemo injections when the veins begin to deteriorate from the chemo and prevents multiple IV "sticks" with the needle.
DECEMBER 11, 2009
Before this experience, I had never been admitted to a hospital (that I can remember). I was very nervous on the day of my surgery as I waited in the prep room. I removed all of my clothing from the waist up and slipped into my surgery gown and climbed back into bed. The nurse pulled back the curtain and, after raising the arms on the bed so I couldn't roll off, pushed me into the operating room.
There were several nurses scurrying around the room preparing instruments and washing hands when I entered the room. On the count of 3, they hoisted me up from the hospital bed to the cold, flat operating table. They pulled my shirt down and began swabbing the area on my chest on the right side.
The anesthesiologist rolled over on a stool very close to my left side, opposite the other operating room nurses. She seemed very nice and made me feel a little more comfortable as she began to describe what was going to happen and what I should expect. She explained that she was currently giving me some medicine that would make me feel very sleepy and I would likely fall asleep before I got the chance to meet doctor. However, this was not the case. He walked in and asked the anesthesiologist if she had begun giving me my medicine and she confirmed that she had begun the process. He seemed in a hurry and anxious to get this over with and it made me very uneasy. I could feel my eyelids get heavy as I watched him frantically wash his hands at a sink to my right and ready himself for the surgery.
I was still conscious when he began making the incision in my chest. I wondered if I was having a nightmare when I felt the scalpel slice into my skin. I began to cry. I had never been more afraid of anything in my entire life. Why wasn't he stopping?
"That hurts!" I cried out through my sobs. He continued the surgery and without hesitation barked at the anesthesiologist, "She's crying. Can you do something about that?" and went back about his business. To my left I heard someone whispering my name. I looked toward the voice to discover the anesthesiologist that had proved to somewhat of a comfort to me a few moments prior.
"Julia, tell me about your girlfriend. She says you guys have a dog, what is his name?" She asked me to talk with her and I did for a few seconds before the cooling sensation of the drugs kicked in. . .
I woke up in the prep room and to my immediate relief, Carley was there. I was overcome with emotion and I starting to cry again. I recounted the events of my first surgery to her as she looked at me in awe. Neither of us knew how to react or what to do about the situation. As if I didn't have enough reasons to be frightened.
Similar to many procedures in the medical field, this device seemed to cause as many problems as it offered solutions.
I could feel the medicine enter the catheter and make its way up to the connection to the vein right above my collar bone on the right side of my neck. Sometimes, depending on the drug, I could almost taste the medicine in the back on my throat which proved to be quite interesting.
It got infected on 3 separate occasions during my 6 month chemotherapy regiment. One morning, after waking up from sleeping on my chest, I discovered that there was a 2-3 inch red area around the area of the portacath. In a matter of a few hours, it had caused the entire half of my chest and breast to swell almost twice the size. The surface of my skin was hot and itchy. I had a hard time sitting because the weight of my breast was pulling so hard on the infected area around the portacath. Laying on my chest was clearly out of the option and not only from the pain. The swelling was so significant that arranging myself on my chest would have caused me lay at a 45 degree angle not unlike the effect you would achieve sitting on two balloons filled to different sizes.
The horse-pill antibiotics I was expected to take didn't do anything in the way of helping my nausea. The pills were literally the same size as my first pinky digit and I was instructed to take them 3 times daily. My oncologist was concerned that my vomiting was too intense to accommodate this pill schedule and it was back to the Hospital for a 3 day weekend getaway.
DECEMBER 14, 2009
We headed to the clinic early on Monday morning and a small group of my friends and family sat with me in the silent lobby. The installation of my porticath was only the day before and was still very sore.
We were welcomed into the "Chemo Room" which consisted of a large room outlined by large recliners, IV pumps, juice and snacks, and nurses in white jackets.
When you begin your day with chemotherapy, anything else that day just seems fairly pointless. However, we attempted to continue right on the way we had before. I went to bed that night feeling pretty normal. It was really, really strange. I expected to feel the effects immediately. I half expected my hair to stand straight up and fall out all at once, similar to the effect you would get from blowing on a dandelion wishy flower.
Tuesday: Nothing to report
Wednesday: Nothing to report
Thursday: Nothing to report
Friday: Shit hits the fan.
Carley had come home late from work when the pain in my legs started. I had felt fine an hour or two ago but I was getting very sore, very quickly. She massaged my calves, which helped a little, but it started spreading rapidly. It was spreading up to my knees and eventually my hips. The pain was nearly unbearable as it continued creeping up my back and settled hard in each of my shoulders. I ran into the bathroom and turned the shower on hot. Thankfully at that time we had the type of shower you find in retirement homes; it had a built-in seat, plenty of safety handles, and a handheld showerhead. I was out of my mind with pain and I pulled the showerhead down so I could soak my knees in attempt to ease the pain. It wasn't working and I turned the water even hotter. My skin began to turn red before I finally decided this method was fruitless. I stumbled out of the shower and managed to dry myself off. I felt my eyes roll back in my head as I closed my eyes and fell back onto my bed. We didn't have a car at the time and I wasn't sure where I would have driven if I did have a vehicle. All I knew, as the tingling pain spread up my neck and along my bottom jaw, is that staying home was not going to work for me. I felt drunk in the respect that I could barely gather my thoughts. I started sweating through my tee shirt and I pulled the covers up around my neck to keep me warm. Maybe it wasn't chemo, maybe it was some horrible version of the flu.
Carley sat next to me on the bed and put her hand on my back. I heard her faintly as if she were whispering to me from across the room, "Let's go to the doctor......." I opened and closed my eyes several times, rubbing my aching elbows and knee caps. I didn't have the energy or ability to answer her. I remember throwing up and having Carley help me downstairs and into a car.
Waiting in the lobby of the Emergency Room came to be more unbearable than walking into my chemotherapy appointments. As I doubled over in pain, a hundred nurses continued to prod me with questions and badger me about details concerning my condition, medications, doctors, last visit to the hospital, occupation, insurance and my head spun in circles and Carley did her best to provide them with the answers they pestered me for.
My body had been totally consumed by the pain 2 hours later when I was finally admitted to a room. My anxiety rose as the attending nurse pulled out her How-To manual for using a portacath. "Great," I thought. I talked her through it using all the knowledge I'd acquired during my whole 1 time of using it. This would also mark one of the 10,000 times I saw Carley bitch-slapping nurses with her eyes over the next 6 months. Worse than a protective momma bear, Car was not afraid to let nurses know when they were not providing the care that I deserved.
As the dilaudid entered my IV, it grabbed me by the shoulders and instantly removed the stress from the muscles around my neck. It warmed my body like a hug from an old familiar friend. I could feel it racing through my veins and providing instantaneous relief as it traveled down my arms to my lower back and . . .
A few days later, I was released from the hospital. We had started to manage my vomiting and pain and I had been taking medicine orally for 24 hours. What I quickly realized is that my body required a 1-2 day recovery period after my hospital stays. The day I was released from the hospital was the eve of Christmas Eve. My family agreed to come up to my house for Christmas (celebrated on Christmas Eve) in case I wasn't up to traveling. Grandma was making my favorite dessert in the entire world which is a Jello-whipped cream-cream cheese pretzel-shortbread parfait. I know that sounds weird, just trust me. Its epic and it very rarely rears its little head, even at holidays. Though I hadn't eaten in the last two days, I choked down a small bowl of oatmeal that morning and was feeling pretty confident that I would be able to handle the dessert, in small portions of course.
I felt good for about an hour on Christmas Eve, just long enough to hold my 2-month-old nephew for 15 seconds before he began crying, screaming, and pooping. I spent most of the day kicked back in my arm chair, forcing a smile the best I could but secretly wishing I was upstairs enjoying a good medical marijuana knockout nap.
---- ( Chemo #2, #3) ---
By my fourth chemo treatment, we had gotten into a bit of ruitine which made things a little less fightening, I suppose, but it at least helped us plan out our weeks.
The schedule, like clockwork, was as follows:
Tuesday: No report
Wednesday: Pain in jaw, radiates to neck and knees
Thursday: Bad nausea, pain spreads, Emergency room by 11:00pm
Monday: Back Home
Tuesday: Recover from Hospital Stay
Wednesday: Recover from Hospital Stay
Thursday: Feeling like a 6 (Scale 1-horrible 10-picture of health)
Friday: Feeling like a 7
Saturday: Feeling like an 7.5
Sunday: Feeling like a 7.51
Rinse and Repeat.
MORE TO FOLLOW:
Dilaudid - How many pain pills is too many? Stop asking me "Do you remember...?"
Constipation - Which enima will work more effectively; oil or water?
Food - I could eat this every meal everyday for the rest of my life - True or False?
Nurses - Who knows more about how to treat me...you or me?
Vomit - get f*cking used to it.