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.

Why Me? Part Two.

Hiking along the Harpreth River Narrows, TN

The name of my blog is a reminder….to not give all my energy over to something that can’t be controlled with worry, something that can happen to anyone at anytime for no reason. Why me? why not?

This past fall I changed Oncologists. I mentioned an area of concern that one of surgeons had noticed in a scan two years ago. My previous oncologist decided to “wait and watch” and that never sat well with Bobby and I. My new oncologist moved fast and immediately started to investigate. She ordered scans and referred me to a Thoracic Surgical Oncologist. He ordered detailed scans followed by two surgical biopsies.

First off we needed to rule out breast cancer. The second big concern was pancreatic cancer as detailed scans revealed not only a cluster of enlarged lymph nodes, but a messenteric mass was surrounding the celiac artery.

This leads us to March and once again, we “wait” …appointments, blood tests and consults.

My diagnosis, Non-Hodgkins Lymphoma. Blood cancer.

Speed bump.

For two weeks we sat and setted with the idea of a surgically implanted port and R-CHOP chemo treatments. The thought of having to put my life on pause so that I may live made me angry and I was in disbelief. My body and mind have been through so much the past 2.5 years; breast cancer, pandemic, 6 surgeries, my brother’s death…even my big boy leaving home for college 2 states away….

Despite the past two years, I honestly have never felt as strong as I do now, physically and mentally.

My anger and disbelief softens.

So I began preparing for this pause in my life…so I can further life. Prioritizing things I wanted to continue for the short future and putting other things on hold. I knew I wanting to continue practicing and teaching yoga, so I decided no garden this year. A family vacation would unlikely happen over the summer so we planned a last-minute trip to Nashville the week before my treatments began. I researched diet and hacks for dealing with chemotherapy.

I cut off my hair.

Less than a week ago I added another Oncologist to my Anti-cancer army, her specialty; Hematology.

She describes my new cancer as a weed in the garden: we treat it, watch and when it grows back we treat again. Incurable, but treatable. She is the head of the department and a research Dr. So, a rock star in hematology oncology. She gave me some options for treatment. The top option was targeted therapy. Weekly infusions of monoclonal antibodies, a good place to start.

I’m ALL in.

Wham-bam we start Friday! For the next four Fridays I’ll be at the cancer center for 5.5-8 hours for treatments. After week 4 I take a break. Scans will tell if there is a response. If there is a reduction of more than 50% than we have a sign its working. If not, Dr has more options in her cancer arsenal.

So this means we are starting with a treatment plan that won’t be so hard on my entire body! Side effects aren’t as grueling. I can garden, likely vacation, I’m embracing this short hair, and of course, continue with yoga. I can still do it all, sure I’ll have to slow down a bit. But all my energies are going toward this treatment working….Why me? Why Not?

If you’d like to join me in this direct line please send a bit of your thoughts, love, energy and good vibes my way.