It’s Thanksgiving Eve, and we just got home from my first infusion treatment at UNC-CH Medical Center!

We got to Chapel Hill the afternoon before my appointment, and spent the day relaxing and doing touristy things. We got ice cream at Maple View Farm Creamery. We took the pugs and hiked the North Carolina Botanical Garden‘s trail network. In the evening, we walked around downtown Chapel Hill, ate Chinese food, and browsed a really cute book shop called Epilogue. I wanted to go into my first treatment feeling happy and well-rested.

How did the day go?

I started my treatment day with a 20 minute Yin yoga practice using the mantra ‘Wellness is my natural state‘ as my positive affirmation. I ate a healthy breakfast of sweet potato, bacon, and apple hash with a cup of turmeric ginger tea, plus some extra water. I love my coffee, but decided to avoid the caffeine knowing I was going to get a massive dose of steroids in my IV line.

Ultimately, I was still incredibly nervous going into the appointment… so many unknowns and potentially uncomfortable things to endure.

The UNC Infusion Center at Eastowne got me checked in at 9:30. My nurse introduced herself as V, and walked me back to the treatment suite. I told her I was feeling really anxious – she replied ‘Don’t be! This is going to be easy and you’re going to do great!’

The first step was weighing in. I was pretty pleased to see I’ve gained about six pounds back from all the undesired weight loss that happened when I couldn’t eat. Being on 30mg of prednisone daily for six weeks has really alleviated my pain and oral ulcers. I am finally able to eat most solid food again. I know people hate being on steroids, but to be able to eat without pain and bleeding is such a gift!

After I weighed in, V went over the full plan for the day. The first step was a check of my vitals. Then there was bloodwork (a complete blood count to check for infections) and urinalysis (to check my kidney function). So that there would only be one needle stick for the day, V placed the IV in my left arm and took the blood sample through the line. The blood and urine went off to the in-house lab. I had to wait about 30 minutes for results. The urinalysis was normal, but the CBC had a few abnormalities. Apparently, the abnormalities were typical of someone who is on long-term prednisone – an elevated ANC (absolute neutrophil count) and some red blood cell values were out of range. Fortunately, nothing was so abnormal that I couldn’t proceed with treatment.

With my labs satisfactorily completed, the next step was waiting for the in-house pharmacy to compound my infusion. They mixed 1000mg of Truxima (a biosimilar of Rituxan/rituximab) into a bag of saline. This step took about 30 minutes, too.

Once V had my bag of medication in hand, she started me on a combination of pre-therapy drugs. I was given two Tylenol tablets by mouth to prevent muscle pain. Then she injected a 125mg dose of Solu-Medrol (a steroid) and 50mg of diphenhydramine (Benadryl) into my IV line. These medications are given to prevent adverse drug reactions, like hives, swelling, breathing issues, and low blood pressure.

The Benadryl was the only thing that actually made me feel weird. It burned in my veins and immediately made me feel like I was doing cartwheels in space. Very trippy!

Immediately after that, V hooked up my Truxima infusion and programmed the drip speed on a little console. She let me know that it would take about four hours for the infusion to run its course. It’s definitely a long day of sitting in one place.

Since this was my first infusion and they weren’t sure how my body would react, they dripped the Truxima slower than they will for future treatments. The flow started at 50 ml/hour for the first 30 minutes, and then increased by 50 ml/hour each half hour before topping out at a flow rate of 400 ml/hour. I think it took eight gradually increasing cycles to empty my infusion bag. It was nice to see the drip go faster and faster as the day went on.

I didn’t feel anything unusual during the Truxima infusion. I was still a little woozy from the benadryl, but I was never able to actually sleep. I talked to my husband. I watched Food Network. I texted with friends and chatted with the nurses. I ate CAVA for lunch – so delicious – and my mouth even tolerated the tomatoes, pickled red onions, and vinaigrette! V encouraged me to drink extra water throughout the day, which meant I had go wheeling to the bathroom with my IV stand a few times. That was easier than I expected, too. I just unplugged myself and rolled out! I brought my laptop and my iPad with me to infusion day, but I never even got them out of the bag.

The alarm on my drip went off a couple times during the day. Once because there was an air bubble and a couple times because I had my arm bent too tightly. The nursing team was always instantly responsive when I asked ‘Why am I beeping!?’

Can I Buy an Infusion Chair for my House?

The infusion chair was super comfortable! It was heated. It fully reclined for both my back and legs, and it had an adjustable headrest. The nurses brought me three pillows and as many heated blankets as I wanted. They offered snacks and drinks throughout the day. I made a nest for myself and was cozy and comfortable all day.

V was especially kind and calming throughout the entire process. She laughed and made jokes and told me to be sure to eat some chocolate ice cream before I went to bed that night. When my husband went to pick up my lunch, she sat with me and told me about her upcoming trip to India.

Around 3:45 pm, the final bell went off and my IV drip bag was EMPTY! I did it! I made it through my first infusion and it wasn’t awful or scary or even that uncomfortable.

The last step was waiting for about 30 minutes after completing the infusion. V made sure I wasn’t having any type of reaction and checked my vitals one final time. Then we were on our way! The whole day clocked in at seven hours at the infusion center.

I felt surprisingly well and energetic, despite the long day. We made a quick run back to our AirBnB and took the dogs for a walk and fed them. Then we headed to Tarantini for dinner. It’s a great Italian place we found on our first visit to Chapel Hill. And on our way home… we stopped for chocolate ice cream! Nurse’s orders!!

I was asleep by 8:30.

Epilogue

I felt totally fine/normal today, too. No fatigue, nausea, headache, chills, sore muscles – not even a bruise from the IV line. The only thing I did notice was that I was really puffy – definitely some water retention happening. But overall, I feel really good! It’s hard to believe I can feel so normal when all the B-cells in my immune system are being destroyed by the infusion drug.

Even after the four hour drive home today, I was feeling up to a hilly four-mile power walk and doing dinner prep for Thanksgiving tomorrow. I definitely feel I have much to be thankful for this year!