Crappy diagnosis – check.

Plan for the future – check.

Medication chosen – check.

Insurance approval – check.

First infusion scheduled – check.

Now, I just had to sit and wait.

I counted down to my first infusion for weeks, flip-flopping between being excited and being scared to death. I spoke with my doctor, read about the risks and side effects, and learned what to expect during the infusion, immediately after, and in the days that followed. Once all that was done, I was ready to get it over with. Sometimes, too much information is…too much information. I remember a story my mom told me about my grandfather when he was scheduled for open-heart surgery. When the doctor came in and started going through the risks, he stopped him and told him he didn’t want to know. Granddaddy told the doctor he could tell the rest of the family the risks, but he was good. What he didn’t know, he didn’t worry about. I had finally reached that point with the information about the medication before my first infusion. The possible side effects weren’t the best, but the risk of PML (scary brain infection causing severe disability and death) was obviously, the scariest. Each time I came to terms with the risk versus reward and put the brain disease in the back of my mind (ha), I either received a package from the drug company listing all the risks in bold type, or a call from a case worker asking if I understood the risks. I pictured a to-do list at the drug company corporate office, and on it was the listing, “See if we can make Quincy freak out today.” Check.

The majority of the numbness in my body had improved greatly since my 3-day course of steroids. The medicine had reduced the inflammation from my flare-up, and I could finally feel my feet and legs again. The pins and needles feeling would come and go, but thankfully, it wasn’t consistent like it had been for the weeks before my diagnosis. My right hand remained a problem, I still had the electric shock feelings in my shins, and my fatigue was off the charts, but some improvement was better than none. I was thankful yet again to be able to work remotely, so my days were filled with work duties and taking care of my family, and my nights were filled with, well, nothing. I spent my evenings following dinner struggling to keep my eyes open. We would settle in the living room with the television after eating, and I was out cold by 7 pm every night. I was the life of the party!

The week of my infusion finally arrived, and even though I was exhausted, I wanted to clean the house. Yes, you read that correctly. I wanted to clean the house. Cleaning is my stress reliever. I’ll crank up Alexa or turn the television on to something for background noise, and I get to it. It’s my way of getting my mind off of something if I am stressed, or taking my frustration out on something if I am mad, (you should see how my shower sparkles if I am pissed off). It was just what I needed to fill the idle time until I had questionable chemicals pumped into my body, I mean, until my infusion. So, in my spare time in the days leading up to my appointment, I picked up around the house and cleaned. My husband came home one evening and insisted he and the kids would take care of the house over the weekend, urging me to rest. He laughed when I told him I wanted a clean house in case I had a reaction and died, because people would be bringing casseroles over. You laugh, but you have to remember, it’s the South, and we celebrate or sympathize, with food. If you have a baby, we bring food. If you have surgery, we bring food. If there is a death in the family, we bring food. It’s what we do. And I was not, (capital N-O-T), going to have people come over and drop off a casserole to my husband and leave saying, “I’m just heartbroken for the family. How sad she died so young. But bless her heart, did you see how nasty her house was?” Again, it’s the South. We have big hearts and bring food during a crisis, but we will throw your ass under the bus in a second while blessing your heart. We are sweet and scary like that. So, it has become part of my routine to clean the house before my infusions every four weeks. Just in case.

Infusion day finally arrived. I managed about 3 hours of sleep the night before, so I was in rare form on the way to the MS center at my neurologist’s office. Since it was my first infusion, I would be arriving early to complete paperwork and meet with the nurse to talk about the procedure. Following the infusion, which would take an hour once the medicine started dripping, I would be required to sit for another hour for observation, in case there were any reactions or side effects. Ya’ll, I was a mess. My nerves and anxiety were in high gear. Not knowing how I would tolerate the medication was tough, but for me, it was worse thinking about being stuck in a chair hooked to an IV for an hour. I was nervous about taking any anxiety medicine before the infusion, not sure if there would be any interactions, so I skipped the much-needed meds and went cold turkey. Not a good idea, and I found out later, completely unnecessary. The morning of my infusion could have been so much better had I asked about popping some calming pills earlier. Instead of heading in all calm and collected, I panicked and had the shakes all the way to the office.

I checked in and was called back almost immediately by one of the staff members. The hallway we walked down opened into a large open space. The left side of the room was well-lit by a wall of windows and plenty of lighting, with about 15 recliners lining the area. The right side of the room held fewer recliners in a space that was dimly lit, for those wanting a little more privacy and less activity. A circular nurse’s station with glass walls filled the middle of the space, and the room was bustling with patients and nurses, chattering and laughing. Hearing the kind tones of the nurses and the familiarity they had with their patients was comforting. It instantly put me at ease, which was what I needed so badly. I was told I could grab any available seat and a nurse would be over shortly. I chose a recliner against the windows and watched the activity around me until my nurse arrived. Some patients read (actual printed books!), some slept, a few chatted with each other, and the rest were on their cell phones. All different ages, genders, races, and backgrounds, and most you would never know had Multiple Sclerosis just by looking at them. All different types of people, fighting the same battle. As someone told me recently, “Welcome to the club you never wanted to join.”

My nurse came over and started going through the whole infusion process, with special emphasis on my favorite part, the risks and side effects. Yay! She was amazing and made me feel so much better, even with the dreaded topic of conversation. (All the nurses have been incredible since day one…minus the one that tried to kill me with the IV needle a few weeks ago. But she ended up showing me how to turn the seat heater and massager on in the chair, so I have forgiven her). We talked about my symptoms, my diagnosis, my treatment plan, my family, and my work. She started my IV, brought a pillow for my arm, sat with me for a few more minutes, and then moved on to her next patient. I reclined the chair, closed my eyes, and felt the cold liquid as it entered my vein. About fifteen minutes passed and my nurse came back to check on me. While taking my vitals, she asked several questions. “Headache?” “No”, “Scratchy throat?” “No”, “Nausea?” “No”, “Chest pain?” “No”, “Any itching or rash?” “No”, “Feeling ok overall?” “Yes”. She told me she would check back with me in a few minutes, and she moved on again to another patient. I closed my eyes and thought about the questions she asked. Bad idea. Are you familiar with phantom lice? This is relevant, I promise. Phantom lice is when someone’s head itches just talking about lice. (I bet someone just scratched their head after reading that). All it took was the nurse asking me questions that related to side effects and reactions to the medicine, and after she left, I thought I was having them. Am I starting to get a headache? I’m lightheaded and dizzy. I think I am itchy. Oh my God, I think I have shortness of breath. My heart is racing. This is it. I’m going into cardiac arrest. I started sweating and was clammy. Everything was getting bright and blurry. Thank God I cleaned the house because casseroles would be coming soon. Deadly reaction to the medication? Nope. Panic attack brought on by anxiety. Affirmative. And this one was a doozie.

I started taking deep breaths and tried to calm myself down. When the nurse came back to check my vitals and see how I was doing, I fessed up and told her what was happening, (although I’m pretty sure the blood pressure machine was screaming with my secret). We talked about my anxiety and about the medication that I take for it. She not only told me I was perfectly fine to take it before my infusion, but she grabbed a bottle of water and told me to take it asap. She stayed and talked to me, keeping my mind busy until the medicine kicked in. She was an angel. And much to my surprise, I calmed down pretty quickly. And I survived. That one shocked me too.

The rest of the infusion went smoothly, as did my hour of observation. I was much calmer, thanks to the anxiety meds, but my mind still raced wondering if I would have any reactions to the drugs. When the time was up, and I prepared to leave, I was feeling better having my first infusion behind me. That is until the nurse came over and went over the side effects and reactions again. She must have gotten the memo from the drug company to freak me out one last time. She told me if I had any shortness of breath, chest pain, confusion, memory loss, problems with coordination/motor skills, or any lingering headaches that seemed out of the ordinary, to go straight to the emergency room. Good Lord, that’s a typical day for me. Not stressful at all. Sigh.

In the weeks following my infusion, everything seemed to be improving and our family was slowly learning a “new normal.” I had no idea that in just a few short weeks, everything would come crashing down, and I would be fighting what felt like a losing battle for my physical health, my emotional health, and my job.

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The JC virus is the infection that leads to PML. The JC virus is very common and is easily passed from person to person, but healthy people never have symptoms or complications. That’s because a healthy immune system fights the virus and keeps it dormant, preventing it from crossing the blood-brain barrier. Disease-modifying drugs, like Tysabri, successfully reduce disease progression and damage caused by MS, but they weaken the immune system. When the immune system can’t keep the virus dormant, it can become active and enter the brain, causing severe damage, and commonly, death. Thankfully, PML is rare, and testing for the JC virus that causes it is simple, so keeping an eye on bloodwork results is key. If the virus ever is detected, then bloodwork results can give values gauging the likelihood of developing PML. At that point, alternate therapies would be considered based on risk levels.