Phase 1 Treatment: By the numbers

Books Read: 1

Sitting nervously on the examination table, I opened Lisa Woollett’s book, Rag and Bone: A History of What We've Thrown Away, for the first time. I was waiting for an initial diagnostic test to determine what was ailing me.

I immediately bonded with the author, as we share passions for the environment and for savings items destined for landfill. I imagine she would approve of my efforts to rehome midcentury modern objects from my childhood church before it was demolished. For a moment, I was swept into the book and forgot where I was.

The ultrasound technician arrived and quietly assessed me. When she was done, she sweetly waited while I gathered my things. Her smile didn’t reach her eyes and her shoulders were pinned to the wall, as if holding her up. She knew the diagnosis that would appear in my inbox the next day – that my belly was full of cancer.

I carried that book to dozens of appointments over the next six months, its corners becoming dog-eared.  I often didn’t have the time or energy to read so it became more of a safety blanket of sorts. I was wrapping up my final chemo activities when I reached the last page. I walked back to my car feeling accomplished. Not only had I finished the book, but I was also confident that my cancer had been knocked into remission.

Super Scary Moments: 3

I was, of course, terrified when I first learned I had mantle cell lymphoma. My second super scary moment was when I ended up in the emergency room after my first chemo.

I also had a scare related to low platelets. Platelets are cells that help blood clot, thus keeping a person from bleeding out. A normal platelet count for adults is between 150,000 and 450,000 platelets per microliter of blood. Let’s just say a minimum of “150” for simplicity. Because my platelets had dropped drastically after a previous infusion of cytarabine, there was a standing order to transfuse me with more platelets if my count dropped to “20.”

My platelet count on Monday, May 20th was “22” and therefore I didn’t receive a transfusion. I was, however, scheduled for a possible transfusion on Thursday the 23rd. By Wednesday, I was feeling pretty low and I had wounds on both of my shins.

By Thursday morning, the fronts of my legs were a patchwork of red and black. My platelet count was “2.” I was quickly transfused and not allowed to leave the cancer clinic until my platelet count was in the 50s.

I now know how dangerously low my platelet count had become. At these low levels, the body can spontaneously start bleeding (which is what was happening to my legs). My lowest point was “2” and at “1,” a rare scenario may arise where the brain starts bleeding which can be fatal.

Percent of medical expenses spent on treatment: 55%

Thank goodness for health insurance. I recently downloaded all of my claims data and began slicing it in Excel because, you know, data is fun.

The treatments to kill the cancer (called chemoimmunotherapy) accounted for 55% of my total medical expenses this year. In this number I included a medicine used after chemo to jumpstart my production of white blood cells, as well as the three hospital stays where I had intense in-patient chemo infusions.

Before chemo even started, I had 55 claims associated with researching what ailed me. These claims included multiple exploratory procedures, lab results, and meetings with medical professionals. Overall, 19% of the money spent by me and my insurance company this year was for my initial diagnosis and to formulate a treatment plan.

Throughout my chemos, I had side effects that resulted in needing urgent help from hospitals and clinics. I later learned that my negative responses were not typical. Before my last chemo, my care team decided to reduce the dosage (per the scary moment described earlier).

My three trips to emergency rooms resulted in 5% of the total medical bills (which, to be honest, turned out to be less than I expected).

I needed six blood transfusions (platelets, red blood cells, or both) to keep my body functioning and they accounted for 9% of the total costs this year. I did still need transfusions after my last chemo (even after being given a lower dosage ) but the experience was less scary than earlier incidents. Phew.

Miles Driven: 4,663

I made 80 trips to hospitals, clinics and laboratories. I love driving and I enjoyed much of the time alone in my car. I have also appreciated the rides I have received from others. Like the time my mom drove me to an MRI in Blaine and the whole way there the GPS kept telling us to get off the freeway.

Or how Rochester is at the limit of our car battery, so to conserve it we’ve had to drive the whole way in freezing temperatures with no heat (first world problem, I know).

Speaking of Rochester, there is only one ramp tall enough to accommodate our 3/4 ton heavy duty pickup (yes, we have a small electric car and a ginormous truck – do they cancel each other out?).

Oh, and I once called my parents in a panic begging them to drop everything and help me to the hospital ASAP. In hindsight, I should have chosen my words more carefully, as they were completely ashen when they pulled into my driveway.

Energy level: Boundless

The first half of 2024 has been a wild and crazy ride. I am now completely recovered from chemo and I feel great. When I say great, I feel like I did five years ago. I have energy for all the projects that have been floating around in my head. As I was puttering in the kitchen late one evening, preparing to host Archer’s graduation party for scores of friends and family, Charlie watched me with amusement.

I looked at him and said, “are you reminiscing about the good times when my body was so full of cancer that I just sat on the couch and watched Nova with you?”

“Yep,” he replied.

“Yeah, I enjoyed those times, too.” Then I went back to work.