Dear Family, Friends, and Diary,
Marianne was starting chemotherapy to prevent recurrence of cancer, so-called "asjuvant therapy". I thought I'd document the time, hopefully not too eventful, for our own record. If this helps take mystery out of treatment for others who will go through chemo, then the story might have an extra benefit. As always, writing is therapy for me (and I need it.)
On Thursday (Jan. 13), with blood tests done the day before and before Friday's infusions, we had a very regular day. I reviewed the latest Tesla YouTube videos and finished for the second or third time a National Parks puzzle. I think all this keeps my head busy, a good thing. For her part, Marianne focused on art. She had a Zoom-class in the morning and then discussed the class, and life generally, with friend Claudia. Both art and friends are life-savers.
Friday was the big day: start of 12 weeks of chemotherapy. We were both awake early. Cambridge Avenue was foggy when I picked up the morning New York Times, matching the muddle in my head. We left home before 8:00.
At Kaiser's third-floor oncology department, we were ushered into the halls and labs that were so familiar from two-years ago. Since this was her "first" infusion session, I was allowed in as her support visitor. Covid will keep me out after this. Nurse Eric greeted us like old friends he'd rather see in different circumstances. We all agreed on that.
Eric almost-painlessly inserted the IV tap with his excellent technique and proceeded to hang four bags over the next four hours. The start was saline, accompanied with his apology for the "a-salt" all patients go through. Old medical joke. Dad-worthy. Then there were vitamins (I think) and two poison potions: carboplatin and Taxol.
After that, the day went well. We returned home to normal activities, including an evening game session with Jen, Brian, and Geoff. It all felt good and normal. (I guess "normal" is my new, favorite, word and daily goal.)
After a good night's sleep, Saturday started good too. Marianne had a couple-hour video chat with Dale in Germany. After a quick visit to neighbor Vern, I set out a jellyfish puzzle to solve.
At four in the afternoon, Marianne hit a wall. Her energy dropped to zero, so she retreated to the comfy Mamo-chair, up in the library. This was the chemo we remember from the old days, uncomfortable, but bearable.
At 6:30, her heart started misbehaving. Pressure and pulse went up and down erratically. This was a chemo complication we really did not want and we started going through the few compensatory measures we knew too well from past afib events. A extra heart pill, or two. Rest. Prayer. Sleep.
By Sunday morning, things were no better. Marianne's Apple watch issued "irregular heartbeat" alarms, but she already knew that. The watch record also indicated that the heart rate had sometimes returned to near-normal, giving some hope. We decided to stop the new anti-nausea medication, prompted by the heart-effect warning in the fine print of the drug's description.
All day we tried to get new advice or direction. Marianne focused on Kaiser's help lines and email exchanges with her doctors, while I consulted Doctor Google. Weekend help from the medical system was essentially non-existent. Google was just frightening. By bedtime, nothing had helped.
On Monday morning, early, Marianne resolved that it was time for the dreaded trip to the Kaiser Emergency Department. We bypassed the help line, because we knew the symptoms and the inevitability of their recommendation to go to the hospital. We were there by 8:15. Marianne was admitted and placed in an isolated room while I retreated to the car in my normal parking place. Yes, I do have a "normal" parking place outside the Emergency Rooms.
For the rest of the day, the medical team did their things: blood samples, chest X-ray, EKGs, and drugs. Nothing worked and she was admitted to Room 224 upstairs. There, they continued the drugs, samples, and speculating. I was allowed to visit, under the pretext of delivering her CPAP machine, and with the permission of Marie, the Charge Nurse (and a Cambridge Avenue neighbor). Marianne seemed remarkably upbeat, considering everything.
Back home, I distracted myself as best I could. Marianne and I texted a couple times and then she tried to sleep early. Throughout it all, it was discouraging to think chemotherapy would last three months. We tried not to think how long heart problems will interfere with "normal'.
On Tuesday morning Marianne called from her room-with-a-view at 5:15, suspecting I would be awake and on my way to my Starbucks office. She was right. She reported that not all the drugs and vitamins and minerals she was being given had stayed inside where they belonged. And her heart remains uncontrolled. Despite that news, the tone of her voice was good, all I can really judge by. She's tough.
I finished my diary and then went home to wait for news. Marianne and I talked and, over the course of the morning, she had a lot more conversations with medical folks, mostly cardiologists. Clearly, chemotherapy had affected her heart and a new solution to the pacing problem needed to happen. The decision was made to move to a new drug (Tikosyn), one that requires a three-day hospital observation stay. Originally, the afib specialist had said to wait for the completion of chemo before the new heart drug, but events had changed plans. Hopefully, Marianne's tolerance of the new drug would be OK and the cardiologist could release her once the heart testing allowed.
On Wednesday morning, Marianne called me at 6:30 with good news: "I've got sinus!". This meant her heart was back in regular rhythm and we could both breathe easier. The tone in her voice and my own stomach both signaled relief. There will still be a day or two in the hospital monitoring the rebellious heart, but we now had confidence.
I found I had more positive energy than in the last many days and I could at least arrange the house as I was supposed to be doing.
I finished my jellyfish puzzle. I even managed a camellia picture from the back yard. One has to be quick with these once-a-year bloomers because they fade and die in hours.
Back at Kaiser Room 224, Marianne's oncologist made a house call. Dr. Box discussed options going forward, from take-your-chances no-chemo to full stay-the-course. Marianne opted for chemo, assuming her heart remains controlled by the new medicine. The renewed chemo course will restart next Wednesday. Still, nobody can make reliable predictions. That's just the way it is: cancer, cardio, and Covid.
After two hospital-days on the new heart drug, accompanied by several successful EKGs, Thursday was go-home day. Of course, it's not quick. There were a a couple more confirmatory EKGs, interviews with the hospital business office (bill to follow in the mail), release interviews by nurses and hospital doctor, and waiting. Marianne tells me she was packed and ready by noon and I was parked and waiting soon thereafter. Still, release did not happen until after 3 pm. I think it is all part of a hospital program to discourage future visits.
The next stop was Westwood's BBQ for take-out dinner. We brought tri-tip salads home and settled at our own kitchen table. Even though the meat was a bit too chewy, it tasted great, since we were eating together again, at home. Then, it was early bedtime for both of us.
Chemo Week One, done and dusted.
John and Marianne.