“They’re gonna love you,” a man I didn’t know announced as I approached a hospital elevator. I was carrying a dozen of “the good ones” donuts — or at least that is how they were sold to me by the Krispy Kreme employee when he plucked an assortment of twelve.
That’s the idea, I thought and began to tell the man this but he had already disappeared, clearly on a mission.
I was on a mission too though and pushed the elevator button to head up to an infusion room. There, I would stay for the next four hours receiving my first full dose of Ocrevus, a disease-modifying treatment to combat multiple sclerosis.
Looking back in June, I wrote Celebrating My Infusion which documented my very first Ocrevus infusion where the dosage was split in half. This is standard for anyone’s first Ocrevus infusion; however, what is not standard is infusion room layouts. At my hospital’s site, individual infusion rooms for patients are not offered, which means there is one infusion room for multiple people. Essentially, multiple strangers — people I had never met — getting IVs in their arms and undergoing infusions together. In the beginning, this was jarring to say the least but since then I’ve learned more on infusion centers. Here, I am going to take a quick detour in an effort to bring awareness . . .
All infusion centers are not alike and here is more on why . . .
First, infusion rooms themselves are different. They can be like mine where ‘group infusions’ are the norm. However, there are also centers that have ‘group infusions’ but offer private rooms upon request. Still more offer only individual patient rooms with curtains dividing those inside. Lastly, there is even an option to have infusions in your home if you cannot make it to a center.
Analyzing solely “group infusion” rooms: I want to put out a message of encouragement to try them. I adapted quickly to this type of set-up so much so that I actually prefer them. Knowing — and actually seeing — other people go through the infusion process is important because the other people — and their conversations — serve as a wonderful distraction. If I want to join in their conversations, I can; if I want to ask questions, I can; and if I want to share my story when they ask, I can. Basically, they allow me to almost normalize my infusion instead of being scared. In fact, seeing the many (many, many) people that undergo this type of therapy, prevents me from having a pity-party where I wallow in the fact that I have a very serious chronic disease. (Speaking of negative mindsets, people get super panicked when they realize Ocrevus is a form of chemotherapy. While there is much anxiety towards that word, chemotherapy only means a disease-treatment that uses chemical substances. There — Not nearly as scary.)
Lastly, while any patient gets to know their infusion nurses, actually seeing the bonds that others have made overall makes me trust in this process more.
Moral of the story: Do not rule out ‘group infusions.’ Just try them because you be like me and find yourself surprised that you prefer them.
Onto another reason infusion centers are different: Infusion rooms may have different policies on bringing someone into the room with you. In private rooms, this is more acceptable due to the space; however, in a ‘group infusion’ setting this is hard due to limited space. (For instance, my fiancé and mom have both been allowed in and able to sit in leather recliners with me but they have also been given simple folding metal chairs to sit on and even been kicked out of the room and moved to the waiting room because there was no more space as those needing infusions entered.)
Third, people with various health problems can go to your infusion center. (For example, I assumed all being treated in my infusion center were diagnosed with multiple sclerosis but there are so many different treatments happening at the same time. I simply say this to show there should be a level of respect and courtesy for others going through a similar but different situations.)
Overall, my best advice for those entering infusion rooms is to call the center ahead of time to learn how it is set up. Then schedule what is right for you.
Alright back to my story: Moving to the same puffy leather recliner that I snagged for my other two appointments, I waited while the nurses moved to others’ infusions. The nurse I had earlier, whom I have named Jocelyn, was there along with a new nurse.
“How have you been?” they asked while cleaning the area on my right arm for the IV.
“Great,” I answered and told them the truth: I feel really good and have had no multiple sclerosis attacks since I’ve started. True, I have not had an MRI yet to confirm how my body is handling Ocrevus (that will be in the spring) but I feel better than I have in a long time. That alone is amazing.
I watched as the gazes of the other two infusion patients turned towards me, their eyes closing some due to large smiles. They were older women whom I learned were — what I call — ‘infusion buddies,’ basically two strangers who are now friends due to their infusion schedules aligning.
“That’s wonderful,” one of the nurses said as she checked and recording my vitals before injecting the steroids slowly into my arm. “Here, take these too” and she passing two hot pink Benadryl pills my way. Strangely enough, these two medications — which are used to reduce infusion reactions — carry the most anxiety for me in the infusion process and that is due to my very first Ocrevus appointment. There, the steroids caused me to have slurred speech and hot flashes followed by dizziness so strong I could barely stand, which then caused severe nausea. The good news: As the steroids made their way through my body this time, I only noticed a slight swirl of the room. With the close of my eyes for a bit of time, my appointment soon slid by as well as my second (which you can read more on here: Finishing Off My First Infusion).
In the end, this was my first infusion alone. I wanted to test going by myself and in that process, I learned more.
I thought about much as the machine breathed beside me and my medication dripped into my arm . . .
I used to be terrified of needles and blood, and now here I am — having an at least four-hour infusion. At a hospital. Every six months.
I used to cringe at the thought of going to hospitals — anxiety pretty high. Now, I bring donuts to the nurses and smile when they pop into my “group infusion” room to tell me how much a simple donut made their day. Nurses make mine.
I used to be so scared to live life with multiple sclerosis. I’ve always heard many people say they felt MS was a death sentence when they were diagnosed. I never felt like that but I did have a massive amount of fear — fear of the unknown, fear of how different my life would look in the future, fear of how I would be impacted, fear of what I could not control, and a fear of all of my dreams slipping — like water — through my hands. Maybe I still have those fears hidden deep inside some part of my body but you know what? Analyzing it right now, I don’t think I do. I think we are all nervous at times not knowing what the future holds and sure, my future is dramatically different than others due to my disease. But I realized — in my infusion room with everyone around me — that I’m actually living a better life than I ever have. I have an amazing family, a huge support system, and the best pup-kit in the world. Andy and I are moving quickly towards our dreams of traveling and living life to its fullest. And I have one-of-a-kind stories coming from all of this.
I’m lucky. MS has given me this. MS has opened my eyes.
Someone wrote recently on a multiple sclerosis forum: What do we wish we could tell our newly-diagnosed self?
My answer: Life — and my diagnosis — are what I make of it. If I want to wallow in misery and see negatives, I will. However, if I see positives, I will do much better, and I will move forward, and I can be — believe it or not — even stronger.
For more information on the disease-modifying treatments discussed, visit the companies’ websites:
For more information on other disease-modifying treatments, see the full list:
National Multiple Sclerosis Society.
Another highly articulate and inspirational post xxx
Thank you so much for reading and writing, Douglas. This means a large amount!
L (and Andy)