Blasting my B-Cells

And so begins my eventual recovery although, like many things in life, it will get worse before it gets better.  I underwent the first of two rituximab infusion sessions last Friday at the Beth Israel Deaconness Medical Center in Boston. Rituximab is a very powerful immunosuppressant medication that typically sends pemphigus back into remission. I’ve had it before and it’s worked every time. Some people call it a wonder drug.

The infusion services department was exactly as I remembered it: one big room with an assortment of easy chairs or hospital beds. IV and monitoring equipment ringed each bed or chair and a nurse’s station stood in the middle of the room. I signed in at the reception desk and was given an information printout and hospital bracelet. Soon after I was called by a cheerful nurse whom I followed to one of the chairs. We recognized each other and she recalled that I had been her patient a year and a half ago when I last underwent the procedure. It was nice to see her again and I appreciated this bit of continuity.

The rituximab was still downstairs in storage. It would take some time before it was ready to be administered. I didn’t mind. There were a few procedures to follow before they could hook me up anyway. They started with my information sheet. Yes, my name was Margaret Rydzynski and yes, my birth date was as noted on my hospital bracelet. I got asked this about three times. I’m sure they didn’t want someone other than me being pumped full of the drug. I was used to this from medical visits elsewhere so just went with that flow. I was also introduced to another very pleasant younger woman who was in charge of my vital signs as well as my appetite. Starting with the latter, she asked if she could get me anything. Some cookies? Some soda? Water? I requested a packet of Lorna Doone shortbread cookies (my favorite from childhood) and a bottle or two of water. I’ve been trying to stay hydrated these last few weeks so determined to gulp down as much water as they’d give me. The cookies were just for fun.

The nurse prepped me for the IV and then expertly slid the needle in. I hardly felt it, which I take as the sure sign of a pro. She taped it all down, after affixing the hospital bracelet to my wrist. Then she came back with a small hanging bag of Benadryl and a plastic dispensing cup with two huge Tylenol tablets inside. I swigged those down with the provided water and watched as the nurse drew some of my blood for tests. Benadryl was next and I knew exactly what was going to happen with that. It would turn me into a zombie, which was just as well given how much time I had to kill before my session was finished. The Benadryl was given in case there was an allergic reaction to the rituximab (the Tylenol would take care of any aches and pains I might experience). I sat back and watched as the Benadryl began its slow drip into my veins. Then, about halfway through the bag I zonked out. I remember blinking my eyes in an effort to stay awake. The nurse came back after the bag had fully emptied and asked how I was. Oh fine, I slurred. The rituximab wasn’t ready yet, so I finished my cookies and then laid back and dozed.

Then, finally, the rituximab arrived. I was scheduled for two bags delivered over about 3 or 3 1/2 hours. The nurse did her usual, expert job of connecting me to the drug and then left me to drip, drip, drip. My food concierge came back from time to time to take my temperature and blood pressure. She always asked if I wanted anything more to eat or drink. She was very nice. Everybody was. I sat back and relaxed. I still felt drowsy and shut my eyes from time to time. Otherwise, I read email on my phone or scrolled through news feeds or Facebook. It was a quiet and peaceful morning and afternoon. I could hear the infusion mechanism at work – a soft, “wshhhh” sound.

There was more than a bit of anxiety behind all this, though. I knew what the rituximab was doing and the realization terrified me. It was going after my B cells and the result would be eventual “B cell destruction,” as the nurse described it. B cells are main players in the body’s immune system and thus the main culprits in my auto-immune disease. I would come out on the other side severely immunocompromised but able to heal.

Killing off a vital part of my body’s protective mechanisms in the middle of a flu and covid spike was dangerous, so I had made plans to protect myself. I would stay away from crowds to the extent that I could. I would wear a mask if I had to go out. I would ask others to mask up around me. I would follow my body’s cues when it came to activities. My local gym was all but deserted in the late morning. If I felt up to it I would go there for a light workout – masked, of course. I would return my library books to the bins outside. Arlington’s libraries are popular places so I’d avoid visiting them if I could. I even bought a new, inexpensive tablet computer for ebook reading. Did I feel like cooking or baking (or updating this blog)? If the energy was there, I’d indulge in those activities. If not, I wouldn’t.

My infusion session passed slowly but peacefully. I even got lunch – a chicken salad sandwich and potato chips. I chugged more water and occasionally watched as the medication dripped its way into my veins. Eventually I began to feel a chill and wondered if I needed an extra blanket. As we neared the end of the second bag the nurse said to expect some side effects from the “B cell destruction” I’d just endured. I was already chilled and increasingly fatigued. My temperature had gone up a bit, as expected. I was asked to call in if it got too high at home.

Eventually, bag number two emptied completely. I was disconnected and helped to my feet but did not feel good. A chill had taken root; I was tired and a bit achey. I looked forward to going home and dropping into bed.

My  husband came home and asked how I felt. We had a crockpot pot roast for dinner and I returned to bed. The next morning was better. I wasn’t chilled and my headache was gone. My energy level was low but not to the point of exhaustion. I felt well enough to embark on a baking project: a gingerbread recipe I found in a Nigella Lawson cookbook. We had it for dessert. Not bad for one day after a four-hour infusion.

I’m determined to stay active to the extent that I can. I want to keep up with this blog and get back to recording  my cooking and baking adventures. My husband is good at bringing home the right groceries without me along to steer him in the right direction. I have plenty of flour and fresh yeast. I’ll avoid crowds, especially in environments without good air circulation. I’ll try to get to the gym. I really like working out.

And – I’ll keep you posted. Promise!