Recently, a few people have spoken to me about the miracles of a positive attitude. This — I find interesting — seems more than coincidence as my multiple sclerosis new infusion-medication date approached.
“I’m scared,” I told my mom, beginning to cry on the phone Monday, the day before my infusion. “I’m reading this information guide Ocrevus sent because it discusses ways to prepare for your infusion and it is talking about the risks of Progressive Multifocal Leukoencephalopathy, or (take a breather) PML, which is a very serious brain infection that leads to death. It says there are no records of PML in clinical tests but that it could happen — PML is a brain infection that can lead to death or severe disability. I have so much I want to do in life — I want to travel, I want to hike, I want to move, I want to do so much and I can’t — I don’t want — I don’t know what to do if I wake up one day and cannot walk.”
“I know,” she said and I could hear the strength behind her words, the strength not for me but for her to hold back her own tears. “But we have had this talk before” and she was right. The dreaded PML looms over most MS-medication talks. “This medicine you chose — Ocrevus — it has the least risks compared to the other infusion-based drugs. You cannot run this through your mind constantly, you cannot keep questioning. You have to go with this gut instinct that this is a good decision and you have to have a positive mindset because it will work.”
Positivity. There is power in positivity.
A day before a co-worker asked about my health and gave me an idea on how to view my infusion. He said his wife was diagnosed with cancer and went through chemotherapy treatments and infusions. That was a few years ago — a few years ago because she did in fact beat cancer. He told me a story of how his wife looked at her infusions as a type of party — She would bring the nurses donuts and plan fun stops on the way home with her friends that went with her, and essentially she used as many opportunities as possible to distract herself from the reality of the situation, which was that she was fighting a serious illness and that drastic measures were underway to beat it.
I thought about his story endlessly so that when my infusion arrived, I was prepared: Andy and I stopped by Krispy Kreme before and with two dozen donuts in tow, we arrived at the hospital’s infusion center.
The nurse at the front desk introduced herself then waved behind her, directing us to go through the glass door before stepping into the infusion room. “If the lights are off, turn them on — Someone will be in any moment.” She smiled as we dipped behind the door and disappeared down the short hall.
The room was filled with natural light, but I focused on flicking the switch up anyway. I’m a direction-follower, a checklister after all. The lights popped awake in quick pulses, showcasing a room I was not expecting: Five puffy leather recliners were circled together as if invisible bodies were having some sort of relaxed conference. My eyes darted to the IV poles and machines — There were also five, one next to each recliner.
I froze in the doorway. “There are five — five chairs, five IVs. Five.” I counted the number of recliners and poles and machines again. It wasn’t so much the items I was focusing on — It was what was represented.
“I know,” he said. He had stopped too.
“This is group infusion-treatment. I am going to see other people get IVs. Five people — Five other people are going to have infusions with me. We are getting infusions together.” Flashes of multiple needles, multiple jabs piercing through multiple people’s skins, multiple IV drips — The image was jarring.
“I know” was all he could say. I could tell he was startled too.
But what else could we do? We had donuts to deliver — a purpose so I couldn’t leave. I dropped into a cushy recliner that seemed furthest from the pow-wow.
Andrew took a seat in another next to me but the distance between us seemed to stretch and grow distorted. And we waited, in silence, in the empty room.
A few minutes passed before a blonde nurse with a focused expression entered. “I’m Jocelyn,” she told me. “You must be L?”
Jocelyn, I realized, was the woman I spoke over the phone with many times before — to see if my infusion was approved, to set-up my infusion, to cancel my infusion when we thought it would be too soon, and then to reschedule it when we learned it could continue the same day. “It’s great to put a face with a name, ” I started because having a tiny bit of familiarity brought on an equal tiny bit of comfort.
“I’m going to start by taking your blood pressure, okay? Just hold your wrist up so that your palm faces you.” She began walking towards me and that’s when I grabbed the donuts, explaining in my nervous and fast-paced way that I wanted to look at today as a celebration and I wanted to see positivity in my first infusion and thank her and her staff for helping people like me. “So these are for you,” I said before thrusting over the donuts.
She smiled and I felt more relaxed. Food is a sign of love where I am from.
“I’ll put them in the breakaroom and let everyone know — They will be very excited. We love donuts.”
A short time later she returned to take my blood pressure and that’s when another person walked in — a tall, skinny man in his fifties with a brace around one leg. He moved forward with laborious and slow footsteps, his fingers wrapped around a walker with wheels. He looked to be in pain, pausing and out-of-breath in the middle of our circle but his voice showed the opposite: “Hi, Jocelyn!” He had a cheerful tone despite his condition.
“Hey Mike!” she smiled back. “How ya been?” and on they talked as if they were friends — true friends — while he sat before raiding her candy bowl.
“I meant to bring those fireballs, Jocelyn, and I forgot!” I heard the wrappers crinkle under his fingertips — He was not timid in rooting through her assortment of candy.
“Aw — Me too! I’ve had it on my list to bring just for you and I keep forgetting!” and here, they chuckled as good friends do when recalling little facts about one another, like days of finding happiness in fireballs in an infusion center.
“Alright! I’m going to get you going in a second, Mike, but first let me get her started” and Jocelyn returned to me. “I’m going to have you take Tylenol and I’ll give you a steroid and Benadryl before your infusion, okay? They help in case of a fever or an allergic reaction. Here’s the Tylenol first” and she passed me two massive white pills in a plastic pill cup.
Confusion set in — I didn’t know I was going to pre-medicate before my infusion but I told myself this was all new so the unexpected was to be, well, expected. Plus, Tylenol, steroids, Benadryl — They were all medications I have taken before, medications I am familiar with so I tried to find security in that.
I took my water bottle out of my bag that was loaded with papers, a book, a notebook, and computer then dropped the pills into my mouth as another patient came in. This one — a young woman in her twenties. She was thin, pale, and fragile, leaning precariously in a wheelchair as her young grandmother pushed from behind. The girl’s speech was impaired as she whispered and chatted to the happy baby in her lap.
“Mary, hey! How have you been?” Jocelyn greeting her then welcomed her grandmother.
“Not good,” Mary replied, a deep frown tugging at the sides of her lips before the area puddled in sorrow.
“Oh no — Why?” Jocelyn paused in genuine concern.
“Lots of health issues,” she muttered. Grandmother hid her face before looking at Jocelyn to mouth silently that Mary was recently diagnosed with leukemia, on top of everything else.
“How is your mom after her stroke?” Grandmother switched the topic and here, Jocelyn and her spoke in detail about family news the way friends do. It was apparent Jocelyn’s career was not solely in medicine but also in people, and that she was good at what she did.
“Alright,” Jocelyn returned to me after a moment or two. “Now I’m going to give you the steroid.” She rolled up a little doctor stool next to me then placed a pillow on my lap before splaying needles and alcohol wipes and medical tape in front of me. “I’m going to put in your IV first then you’ll take the Benadryl.”
I looked away as the cool of the alcohol was rubbed over my skin and I closed my eyes as the needle — faint and slender — slid into my vein.
Out of my peripherals, I could see her raise a large syringe filled with a clear liquid, which she popped into my IV and held a few inches from my elbow. Slowly she pushed the stopper down as she talked to Mike and Mike talked to her. Immediately, the taste of blood-metal filled my mouth. This is fine too, I reminded myself. You know that taste because I did and I knew stronger when the steroid came in an infusion bag, slow-dripping into my arm.
“Now I’m going to give you the Benadryl” and, no second missed, out went the steroid syringe and in went the other. Immediately my grasp on control was gone — The room began to slow-spin then swirl faster and faster until it blurred and I had to fall back into the chair at an angle Andy later told me was dramatically leaning. “Are you okay?” Jocelyn wanted to know.
“Um, I — I — the room — I’m so dizzy.”
“It’s a head rush. People get that commonly with Benadryl. Don’t worry — You’re fine.”
But fine didn’t feel fine — The little infusion room became disproportionate, extending at some corners and contracting at others, all the while twisting and turning at odd angles. Andrew’s face was a furrow of concern as he spouted off a list of questions that I couldn’t answer. “Scuba diving” was all I could mouth because I was having flashbacks of my Galapagos seasickness when I threw up for hours straight.
“You’re done with the Benadryl.” Jocelyn’s voice was disappearing as she walked away from me. “Now we will wait about thirty minutes then we can start the infusion.”
Another patient came into the room then — A man in his fifties. He was quiet, immediately sitting in a recliner and closing his eyes as Jocelyn worked her magic. Shortly after he was hooked up, his mouth fell open; he was asleep.
“Does it help to close your eyes?” Andrew whispered and I nodded then instantly regretted it as Andy’s face blurred in the direction of my nod — His eyes in a sort of long-exposure, moving slowly down to his chin then above his forehead. “Then close your eyes,” he said quietly again so I did but I could feel the pull of the room in its dance of drugs.
“Who brought the donuts?!” I opened my eyes to see a nurse with a donut and smile.
“Hhhhhaaaa bbbroooohhhhh thhh nuuuhhhs,” I answered then heard myself. Or who I thought was myself but shouldn’t have been. Andy, Mike, Mary, Grandmother — even the baby on Mary’s lap — turned to look at me. I jerked my head towards Andy and focused on pronouncing my words: “Aaahmmm hhhaaa sss-lllaaa-rrrnnn mmmahhh wrrrsss?” I asked and how he understood, I have no idea. Maybe it’s from his experience in translating my mumbles every day.
“You are — You are slurring your words, but it’s okay.” His look of concern was replaced by a type of sorrow and love.
I attempted to use all of my energy on communicating with the nurse but despite my efforts, I still could not enunciate. She gradually left, taking her bets with the sugar over my drugged speech.
“III” and I paused after each word, turning my tongue in my mouth to form the syllables before they sloshed out. “Ttthhhk. III. Nnnd. Rrrst-rm.” I think I made this as a general announcement to the entire room since everyone was still looking at me.
“That’s fine and if you have to go to the restroom during your infusion too, you can at any time, okay?”
Off I attempted to dart to the toilet, wobbly, as the room slid to a sudden twenty degrees.
“You okay?” I heard Andrew ask as I stumbled forward.
“I-m. Fiiine,” I told him and hobbled like a drunk only to return a few moments later with more problems — I was overcome with nausea and had a sharp stabbing pain in my stomach. You’re fine, I kept repeating silently to myself. It’s all in your mind — The room isn’t spinning, the pain is nothing. You are fine.
Jocelyn was by my side again, slipping the Ocrevus infusion bag onto the IV pole. “Alright,” she started, “since it is your first infusion, I’m only giving you half of the regular dose — 300 milligrams. You’ll have the other half when you come back in two weeks” and before turning back, she hooked me to my slow-dripping medicine.
It was around here I had a full-scale panic: Why were none of the other MS patients responding to their the pre-medicines the same way? I glanced around the room — They were reading on iPads, eating candy, and sleeping. Why were they not affected? Dizzy? Nauseous? You should say something, my brain told me but everyone felt so close that I felt it hard to breathe. Noticing my own panic only lead to more panic. I glanced up at my Ocrevus medication then followed the liquid down the trailing tube to my arm. What was I being injected with? I knew on blind faith it was Ocrevus, but what if it was something else? There was no way I could confirm the clear liquid was actually my medication. What is going into me? I asked myself, impinging the liquid being pumped into my body and, it is safe to say, around here I began to freak out.
“Andrew? Can you help me out of my sweatshirt?” I was desperate — The once-cold and comfortable room had suddenly changed, and I was aware of my clammy skin, my profuse sweating, my body heat.
Andrew rose quickly and helped me out of my sweatshirt but by now, the spinning room combined with the heat set me over the edge — I was about to vomit in the middle of my new infusion comrades.
“I think I’m going to be sick,” I told Jocelyn — told anyone — and started to look for a trashcan.
Jocelyn bounced to my side again. “You’ve only had about a teaspoon of Ocrevus so it isn’t that. I think you’re just working yourself up, okay? You’re fine.” Her voice was calm, patient, understanding but I still requested to be unhooked from the IV so that I could throw up in a less public area.
Long story short, I did not throw up — I spent many minutes in the bathroom with Andrew popping in every so often to check on me.
Fear can do crazy things to one’s brain: As I squatted next to the hospital toilet, I reminded myself that if this medicine didn’t work — if infusions didn’t work — there were no other medication options. That was scary. I had nothing — nothing to turn back on. This was it. It needs to work, I kept telling myself. You are being dramatic, a hypochondriac. Allow this to work. You need this to work. I knew what I was doing was a brain-game and I also knew it was one I wanted to win.
Stumbling back from the bathroom, I settled myself once more into the recliner.
“Why don’t you read?,” I heard Jocelyn say, and I remember thinking how kind she was for trying. “I saw you had a book earlier — Reading could help.”
“Maybe you could type — Maybe work on your blog or write you novel?” Andy was chiming in too and I understood their point — They wanted me to find a distraction. However, the aspect of reading or typing while essentially seasick — okay, let’s call it landsick, because it was — would have been the death of me. Instead my body employed the strongest coping power it knows — It became drowsy and here, I nestled into the chair and let the sound of the IV machine breathe beside me — long, slow, steady breaths — lull me to sleep.
I have no idea how long I slept — maybe thirty minutes, maybe an hour or two when I suddenly woke up and (miraculous) felt fine. I wasn’t dizzy. I wasn’t nauseous. I actually felt good.
“How ya doin?” Jocelyn noticed the moment I was awake and came to my side. “Let’s take your blood pressure again.” After a moment, she read my numbers: 87/51. “This is low but not symptomatic,” she told me. “Why don’t you try drinking water?” and I realized then that my mouth felt so dry. She watched me for a second before changing her mind and in one swift movement, she was on the opposite side of the room grabbing a fluid bag then beside me again, slipping it into my IV pole. “It’s okay — You can take both at the same time” and here two fluids slow-dripped into my body too.
As the day went on, my fluid bag emptied and then my Ocrevus infusion bag contained less and less of the medication too until it also was done. Those once sitting with me slowly left the room only to be replaced by others in a rotating clock of infusions.
“Is everyone here diagnosed with MS?” I asked Jocelyn. “And how many of those diagnosed with MS are on Ocrevus?”
“Other than you, only Mike had MS today,” she said, “and he was taking a different drug. The most common drug I give is for Crohn’s disease.” It was only upon hearing this I realized the reason why the other people receiving infusions did not have the same pre-med side-effects: They had different health issues, they were on different medications. When I understood this, I felt lifted as if I accepted myself and allowed myself to be different. What I felt was okay. What I am going through is okay. I am on a different path, a different journey. And I will be okay.
By this time, Jocelyn ordered me to stay for at least another hour to ensure I did not have side-effects to the Ocrevus. During this time, I had my blood pressure checked again.
“89/57. Better, but still low,” she said and dropped a second fluid bag on my IV pole before twisting it into my tube. In my mind, the fluid felt medicine too and all of it made me stronger as I could feel myself become more hydrated.
Then, in the fastest-feeling hour, my infusion appointment was over. “Alright, you are free to leave me,” Jocelyn announced. “Next time I see you, you’ll get the other half of your infusion, then six-months later I’ll give you the full amount — 600 milligrams, okay?”
“Okay,” I told her as we scheduled my appointment that is a half-a-year away. “Am I able to resume normal activity tomorrow?” I asked her.
“Definitely. There is are no restrictions. Plus, I’m a firm believer of ‘mind over matter'” and here, I had to smile.
The power in positivity.
Andrew and I continued our celebration over my first infusion when we left — We went out to eat at one of our favorite restaurants and when I got home, I proudly put on my pajamas at 3:30 p.m. As my kitten approached for a snuggle, I realized I can do this. I can and if anyone else is out there wondering if you can get through health hardships too — You totally can. Think positively: There is power in positivity.