Rituximab 1st Infusion. Check!

Yes, I had anxieties, yes I got little sleep. But my first treatment really wasn’t as bad as my mind had pictured. I didn’t know what to expect as there is not much testimonial information out there.

Overpacked? I like to say I was prepared for any scenario an infusion may bring: starvation, frigid temperatures, extreme heat, dehydration, boredom, dry skin… I fixed my hair, put on a bit of glam and donned cute, yet comfy, clothes…why not?

We arrived at the Cancer Center at 7:45am. We were smacked with an insurance/billing mishap….unsettling at first, but now resolved, and just like that the Director waived us on through as if we paid entry to a roller coaster ride. Tight turns and twists through doors, flashing lights and a hallway that led to a door marked, “Infusion Room” our speed decreases almost to a stop, the coaster hangs and my heart skips before the big drop….the door opens into a large open area of 30 or more vinyl recliners.

I met my Nurse, Katie. I’m a certified expert, authorized to declare a good nurse by “needle work”…she’s a great nurse. She describes the infusion process. She says it will be a long day. We can expect to be here for 5.5-8.5 hours. Anti-inflammatory, pain meds and Benadryl are put into my IV first to help prevent allergic reaction to the Rituximab. I feel loopy, drugged…ready to start the Rituximab. It’s a slow drip, my body needs to acclimate and not react to the medicine. Nurse Katie vigilantly checks my vitals every 30 minutes….all day.

Bobby runs to Starbucks and my Warrior Sister in pink, Sarah, sits with me. She has a Dr appointment at the Cancer Center. Sarah knows this place all too well. Her visit means so much. Her treatments were during the pandemic, no visitors allowed—strongest Warrior I know. She holds my hand, and tucks warm blankets around me.

About 45 minutes into the infusion my throat began to itch, and I could feel welts rise inside my mouth, and it was getting hard to swallow. I ignore it until I feel my ears itch and my sinuses swell. Nurse Katie comes to check in and I tell her what’s going on. She instantly stops my infusion and checks my vitals—it’s the start of an anaphylactic reaction. She gives me another antihistamine and no change. I am terrified my body may reject this medicine….but she reassures me this happens. The medicine is paused for over an hour. My Dr prescribes a steroid and my reactions begin to subside. Slower drip. And time begins to tick.

I have no pain, no discomfort other than restlessness. I try to read, tried a word puzzle, even tried origami. The steroid keeps me from concentrating on anything. Bobby was back. He dozed…I didn’t. I watched the clock. Patients come and go all day. Always a smile before heading back to their everyday lives…just a “to-do” on their list. Amazed these patients go on doing their everyday. I may not know these people but I can tell you they are amazing!

The infusion continued without any issue. Nurse Katie continued to check on me. She knew to the minute when we’d be done. She said next week we start with the two antihistamines and steroids then start the Rituximab. Slow but hopefully will be able to speed up. They second treatment should not be as long.

We got home about 4:15. Mostly I was hungry, I was tired, felt a bit achy, almost flu-like. Saturday I must admit I was feeling fatigued. I was also emotional. I can’t quite explain it other than “did yesterday really happen?” It’s still hard to believe I’m on a second cancer diagnosis. In fact I have an appointment Wednesday with my breast cancer oncologist. Oh, and did I say I was tired? My stomach has been upset but so far no nausea….that alone could break my day. It’s now Sunday and as I write this update I feel pretty darn good! I am teaching a relaxed yoga flow today! So looking forward to getting on the mat!

The science:

Typically, Non-Hodgkin Lymphoma is treated with R-CHOP chemotherapy. Each initial is a different medicine. For me my Doctor is starting with just the “R”—Rituximab.

Rituximab is classified as a monoclonal antibody. Monoclonal antibodies are a relatively new type of “targeted” cancer therapy.

Coming out with Cancer; The C Word

I have breast cancer. Saying it, writing it, thinking it is shocking, awkward and difficult. I know the person receiving this information feels much the same. The purpose of this story is not to explain who I chose to tell but to bring attention to the simple fact that I had a hard time saying, “I have cancer”. I also want to tell you the reactions and the responses that gave me peace. Responses that let me know I wasn’t alone.

Telling my family was extremely difficult. It was Christmas and we had a house full of the very people whose experience with cancer was all to recent; my brother. Holidays are a bittersweet reminder that my brother is no longer with us. We chose to not say anything about the diagnosis till after the holidays. It was difficult, and at times I would have to exit the room with a lame excuse, but I can say it was one of the best holidays we’ve had. Somehow peace and relaxation overcame us all and what’s usually a hectic time had us all day, out back on the porch….just being. Together.

Telling my closest friends was of course hard. I overthought every aspect. Primarily to make it more comfortable for the receiver….I don’t know why…in my mind I “acted” it out. How should I say it; phone, text, in person. In fact I couldn’t say the “C” word. I found myself saying things like, “my biopsy wasn’t good,” or “Im having a mastectomy” anything but that ugly ”C” word. How will they react? How will I react. I didn’t want to cry…I was tired of crying…but I always cried.

With each “cancer reveal” I found myself drained emotionally and physically. I needed a 2-3 day reprieve between each “outing”.

One friend in particular I really wanted to tell in person, she was out of town with family…but that back-fired as on Christmas Day I sent her a text asking her, “How was your Cancer”….Freudian slip? Another friend, just instinctively knew.

It’s been 3 months since I was diagnosed and every day there is a friend who is just finding out. It’s not like I could send out a mass mailing or post on local news…imagine telling a yoga friend just before shavasana…there is just never the right time.

Good news is each time got a bit easier. Easier because of the loving responses, and sure I got some crazy, odd, and even dismissive responses but I have to credit most of that to the shocking and awkwardness of adding “cancer” to a conversation.

Hopefully cancer does not find your conversation in the near future but unfortunately it will and when it does I want you to know the memorable responses that gave me peace:

Extra-long hugs. A loving look. Reminding me of my strength. Assuring you will be by my side. Holding my hand. A jest that cancer has already met it’s match. Your continuing encouragement. Constant “checking-in”. Most importantly “thoughts & Prayers” as told hundreds of times and I felt loved each time. Such power in thought and prayer. It’s working my friends!