This week, we traveled back to UNC-CH Medical Center so I could have my second rituximab infusion on Tuesday. The initial treatment protocol for pemphigus is just two rounds of infusions, given two weeks apart. For now, I’m technically done with treatment.

The second round was much faster than the first round, but overall it was a tougher day.

I got called back to the infusion center about 20 minutes before my actual appointment time. My nurse, Kyle, quickly collected my lab samples and checked my vitals. In chatting with Kyle, I learned he went to college the same place I did. Small world!

By 9:30, Kyle let me know that my labs were within acceptable range and my treatment was being compounded. By 9:45, I was given my pre-treatment medications – Tylenol, Benadryl, and Solu-Medrol. After that, Kyle programmed my infusion drip and got things running. This time, the flow rate was much faster and I was done with treatment around 1:30.

This time, I was able to leave as soon as the drip finished. I didn’t have to stay the extra thirty minutes for monitoring. Kyle pulled the IV, bandaged my arm, and sent me on my way.

I didn’t experience any side effects or adverse reactions. Like last time, I just felt… normal! I’m glad that these treatments were both so easy for me. And, of course I went and got CAVA for lunch again as soon as my infusion was over!

While we were in Chapel Hill, we did a couple small, fun things, too. We got ice cream at Maple View Farm again. We got pizza from Tarantini for dinner on treatment day – so good! We ate an early dinner (so I could avoid exposure) at Top of the Hill on Monday night. Their grit cakes were so delicious! We also finished trying the biscuit restaurants in town. We had already tried Flying Biscuit and Rise, so this time we tried Sunrise. Of the three, I think I’m a Rise fan. They make a blueberry biscuit with a sausage patty on it. It hits the right savory-sweet notes perfectly for me.

Have you noticed my fun activities all seem to revolve around FOOD!? That is definitely because I am feeling extra appreciative that I can actually eat most food again. It feels like a celebration every time I eat.

What Made the Day Tougher?

Even though my labs were within acceptable range, my complete blood count (CBC) was wacky this time. I think they expect rituximab patients to have wacky bloodwork, but mine was wacky in unexpected ways, with an unusually high neutrophil count. The neutrophil count pushed my overall white blood cell count into the ‘too high’ range.

My doctor portal messaged me mid-treatment to express concern about my numbers. She asked if I’d been feeling ill and said the count could indicate an infection. I told her I had been feeling fine (great, even!) I didn’t have a fever, my blood oxygen was 99%, and I had no symptoms of infection, so the neutrophil count could also be from something else. Neutrophil counts can change dramatically in hours and are sensitive to many things, so there may be no real reason for alarm.

We decided that I’ll do a repeat CBC with my local doctor in 3-4 weeks. If things still look suspicious at that time, we’ll have to look into causes (with infection being the primary suspect.)

Even though we’re following a wait-and-see plan, the weird bloodwork rattled me and I spent most of the day obsessing over what was wrong and Googling reasons for high neutrophil counts. I know it’s not helpful to go down rabbit holes, but I am who I am.

The other thing that shook me up during treatment was the poor woman in the chair next to me. She was terrified of needles and having a really bad time.

They could not get her IV placed and I watched a series of three or four nurses make failed attempts to get the needle into a vein. The woman was crying out and hyperventilating. It was really upsetting to see her in so much fear and pain. It made me cry, too. I spent most of my life with severe needle-phobia, so I know exactly how she was feeling.

The final thing that made the day tough was that I had my patient education webinar and support group the same day. It was pretty much nothing but pemphigus – from sun up to sun down.

It was overwhelming to absorb so much information about my disease and also hear how my pemphigus peers are struggling with their paths to remission. I shared that I was hopeful about getting good news in February, and almost immediately another patient in the support group told me I shouldn’t count on good outcomes and to be realistic about my expectations.

What he said might be true, but it might NOT be true. We don’t know what my outcome will be, so I have to try and hold on to hope and positivity. His words were like a pin in my hope balloon – major deflation. I will admit that I have struggled to get his words out of my head ever since. It’s Friday now, and I am still ruminating over things I heard Tuesday night. I’m trying really hard to shake this mood, but I haven’t been able to yet. I’ve had a really low week.

What Happens Next?

Now, I will wait for 6-8 weeks to see if rituximab works for me. I go back to UNC on February 6 to check my progress. At that point, I’ll either be on my way to remission or my doctor will prescribe more rounds of rituximab, more steroids, or a steroid-sparing immune suppressant (or some combination of these medications).

I am feeling hopeful.

I am feeling uncertain.

I am feeling anxious.

I am feeling impatient.

But the only thing I can do is wait and see. Fingers crossed…