I got through the holidays and January – which btw, felt like it took 6 months to get through, anyone else feel the same? Finally it was the 9thof February. My mom came in from Vegas and my Uncle decided to clear his schedule and support.
We arrived at the Infusion center at Baylor at some ungodly hourready to go. I read that people have been there for up to 8 hours so I wanted to be ready, and that I was, let’s go through the list:
Blanket – check
Healthy snacks – check
Waters – check
Kindle – check
Power cords – check
Book – check
Comfy clothes – check
I checked in, met my nurse and was administered pre meds – which included Benadryl, a low dose of prednisone and Aspirin. My nurse, who shared that her mother is a fellow MS Warrior was amazing! She took the time to explain what was happening thoroughly and came to check on me what seemed like every hour. My Mother and Uncle spent their time talking politics not caring that no one in the infusion center wanted to hear their opinion of 45 and his administration…Not sure what they thought going to the infusion center was going to be, but it’s not that, everyone in attendance is there to get infused with a shit ton of drugs!
Finally the combination of glares from other patients, and my constant telling them that no one cared silenced them.
We were eventually moved to a private room, the head nurse said it was so I could be more comfortable.
We all know the real reason….
About two hours in I was done with the pre meds, and it was time for the main event, the reason I was here…. The Big Ocrevus. The drip started slow and easy, I was so out of it I didn’t do much but come in and out of sleep. I started feeling a little congested; sneezy and itchy, but ignored it. A little later I walked while wheeling my IV tree beside me to the bathroom. Once inside I caught a glance of myself in the mirror and noticed my face was bright red! It was a full on flush! As I walked back to my room I passed the head nurse. she made a face and asked how I was doing. I in typical fashion downplayed the symptoms and told her I just felt “allergy”- I know that’s not a word. She instructed me to sit down and told me she’ll be back in a moment. I sat down and the little itchy becomes a lot itchy – everywhere, then it became hard for me to swallow – I was having an allergic reaction.
My mom and uncle gave me and everyone else some relief and went to the cafeteria earlier. So that meant I was on my own, a few moments later the nurse came back in my room and administered some additional Benadryl. I felt some relief after a little bit, went through that bag of meds and continued the Ocrevus. A few hours later I was done.
My first infusion lasted 8 hours, like I said I had read that its possible to take that long, but normally the first infusion should last 5, I am an overachiever.
I didn’t used half of the stuff I packed with me for that trip, they had heated blankets, water, tea and some snacks. But the majority of that time I was going in and out of sleep.
Post Infusion overall I was fine. I had some chest pains and some trouble getting a full breath. I convinced myself I needed to see a GP for this, it wasn’t until I made the appointment it dawned on me to contact my neurologist. He increased my pain med, Gabapentin, and after an hour of taking another dose I was fine, the pain and trouble breathing was gone. Looking back it was probably just a hug.
The weekend was spent watching movies, getting my steps in at Costco and Target, getting brunch, and trying to rest. My mom left Tuesday and I was back to Work Wednesday. I really didn’t experience any differences after the first infusion, other than some fatigue.
Two weeks later it was time for the second round. This time just my uncle accompanied me. We did a drive by at Starbucks before, and arrived at Baylor again at an ungodly hour. I forewent my baggage as before and only brought a few snacks with me. This time I was placed into a private room (they were ready for us) and I had the same sweet nurse as before who went through the same procedure as two weeks prior.
Pre meds – Benadryl, Aspirin, Prednisone in that order
Main Event – Ocrevus
My Uncle left to run an errand and that left the other infusion chair empty. It wasn’t long before another warrior came in and accompanied me. Although she wasn’t fighting MS, it didn’t matter. Both of us were so drugged up with Benadryl that we spoke in between bouts of sleep. Mainly about our cocktails being injected into us, and our stories. It was nice to be in the presence of another warrior, it always is. Finally the Benadryl over came me and I woke up to my fellow warrior leaving. An hour or two later, a returning uncle, and a visit from a good friend of mine, I was done. Other than a strong craving for Panera Bread’s Chicken Noodle Soup, and a lingering feeling I shouldn’t go home and be alone. I felt amazing!
We left he hospital, picked up the soup and went back to my Uncles house. After eating I could feel my energy getting lower, which was the complete opposite of what should happen. I was sure that relaxing and watching some mindless movies would give me some time to recharge and I would be able to go home. Well, after the third movie my energy was still super low. It was almost 11 before I felt like I could maybe leave, and even after that I wasn’t sure I should be alone. I convinced myself that I would be fine, and that he, and a few friends of mine weren’t that far away if I really needed something.
I went to bed that night and other than moving from the bed to the couch for the next four days nothing else happened. I mean literally nothing. I had not felt that fatigued in I a very loooonnng time. It was so bad that even eating took a lot out of me, I literally would have to take a nap after breakfast. Thank goodness something told me to meal prep before the infusion just in case I didn’t have the energy to do anything!
I was so surethe first half of the infusion would be the worst, I didn’t take any days off of work. Monday came around and getting out of bed let along going to work was out of the question. I’m not even sure I showered. Sorry if that’s TMI, but this is real life for me. Sometimes there’s not enough energy and something else will win…that weekend and Monday – eating won.
It wasn’t until Thursday that I rejoined society, and even though I had a good 5 days to rest and recover, rejoining was rough with a capital R.
This Rough period lasted for what seemed like a lifetime – over a month. It wasn’t just Fatigue, no she brought her friends: Brain fog, Migraine, Eye irritation and blurriness, Spasticity, Tremors, and a wonderful flare that took my ability to talk for a little bit…Fun!
It’s amazing how you can assume that just because you are on a new drug, you instantly expect everything will be fine. You think “Well the drug is in me now, I should be good…I’ll be able to do everything that I was doing before and more!” Or maybe thats just my thinking? This isn’t my first rodeo. You would think I would learn by now… Well, clearly I haven’t. You might be asking what’s the rush? Thinking to yourself why didn’t she just give it time?
I think I forgot to mention I had a time line that I was trying to make. I needed all of this to go seamlessly… I was going to China!
Hug – A symptom of Multiple Sclerosis where you have a tight band around your chest or ribs, or it can be pressure on just one side of your torso, some find it hard to breath. www.mstrust.org.uk/ms-hug