Dear Family, Friends, and Diary,
OK, let's try that again. Chemo Week One was way too difficult. Seven days after the first carboplatin/Taxol round, loaded with new heart medicine, Friday was a return to normal. The second round of chemo had been pushed to next Wednesday, so "normal" really meant "normal".
We took the day slowly. There was some grocery shopping to do, and that was a bit tiring for our just-released patient, but it was a welcome return to routine. The only medical task was a phone call from the surgeon slated for installing a "port" to make future chemo infusions easier. However, once again, cardio and chemo considerations did not get along. Basically, a left-side pacemaker and a right-side breast removal left no appropriate spot for an infusion port. Left arm sticks it will be.
Our Friday ended as most Fridays have since the start of Covid: "Codenames" games on Zoom. Jen, Brian, Geoff, Marianne, and I made it through two rounds, interspersed with catching up on "What's new". The Colorado family talked of their icy mid-week and Rich's return to university. Geoff noted Maryland cold and the promise of more ice and snow later in the weekend. Since our California story had already been documented in these diaries, we just added: "We're fine, now." and it was nice to be true.
Saturday was even more normal, if that's a thing. I started a new puzzle, one of the complicated wooden ones I had built once before. The irregular pieces are a challenge. I visited neighbor Vern, thankful for yet one more piece of regular activity and learning a few more stories from his college days working at NBC in the early 1950s, when television was just starting.
Marianne spent considerable time organizing her revised medical life. The school teacher in her needed a place for everything and everything in its place, so history binders needed updating and plans needed clarification. Then, after a short rest, she prepared another great meal. For any number of reasons. it was nice to have her back home.
Sunday started very early, because I could not sleep. As regular and normal as Friday and Saturday had been, it was hard to keep negative thoughts from intruding and there is only so much staring at the ceiling before it is time to get up, even if it is 4:20. Hopefully, Marianne went back to sleep while I was downstairs, writing this diary. And then we will start our regular day, hopefully.
I am writing this three days later, Wednesday morning. How did the days go? OK. OK, enough.
Sunday was quite routine. Marianne started with a video call with Claudia to talk art and life. I broke out the Leica, a real camera, and later discovered a drawback to such "real" cameras. The iPhone hardly ever misses a snapshot, but the real camera is sometimes set on manual focus and requires more attention. Paying attention has not been my strength lately. My backyard "aeonium" picture was better.
While the artists talked, I wandered in the neighborhood. Weekends at Fresno City College are completely peaceful, with just a few folks standing around. I can't tell if these are staff or students. After my little walk, I spent some time with neighbor Vern. That's a part of my routine that I have come to value, although we never solve any of the problems facing us and the world. With 168 years between us, you'd think we'd have found answers, but not yet.
Back home, Geri had come to visit Marianne. They made a colorful pair in the afternoon sun and staying outside remains what we are all most comfortable with, even with just two neighbors.
My afternoon was spent watching football. I'm not much of a NFL fan, but the four games this weekend were all decided on the last plays and that's exciting enough to keep me watching. Of course, there are now just three games left in the season, but I will do my best to be excited about the American tradition. We all need traditions nowadays.
On Monday, we shifted back to health care. For me, that meant over an hour, touring on the Peloton. I started with Taroko Gorge in Taiwan, planning to stop well before the 60-minute program was over, but the scenes were just spectacular. I could not stop before the end and then added a cool down in Newport Beach. These were reminders of all the travel we have not been doing over the last two or three years and how much left there is to see. When? (Newport Beach first, overseas later.)
Marianne's Monday was less fun. First, she went in for the blood test and EKG that are required before each chemo infusion. When results came back, the heart report was vague and unsettling. The white blood cell count was low, although this was expected after chemotherapy. The fix for the "abnormal" EKG was apparently just to wait and see. (and worry). The fix for blood was a shot of Zarxio, a treatment that proved surprisingly disruptive. The drug increases bone marrow activity, and attendant production of blood cells and platelets. Unfortunately, symptoms included bone pain and, in Marianne's case, it started with pain in her lower spine. Last time, the doctor had described it as an extreme case of the bone pains young people suffer when they are growing.
Tuesday was complicated by the Zarxio pains and most planned activity was canceled. Marianne had actually been looking forward to a trip to Kaiser for physical therapy, but could not manage it. When health care interferes with health care, you know things are just not right.
We did manage Tuesday Zoom cocktails with Adrienne. That proved to be a useful distraction, even if we talked about the unsettling times we are living through: war in Ukraine; world-wide pandemic; economic growth turning downward; Republicans. I suppose these are all good distractions for more-personal struggles. (My other distraction was finishing the world puzzle I had started; finished except for a single, missing, piece.)
On Wednesday morning, after a bad night of sleep for her, I dropped Marianne off at Kaiser for Chemo, Round 2. (Covid protocols kept me out.) Round 1 went poorly, and the elephant we had not talked about was how things would go now.
All in all, it started fine. The two hours in the infusion clinic came and went and our patient came home feeling none too worse for the wear. Back home she went to rest in the big recliner. Even the Zarxio bone pains seemed to take a break.
While she rested, I went on my routines. Vern and I visited in his sunny backyard, with only their scraggly cat to keep us company. From there it was a trip to Moto, our neighborhood delicatessen, to pick up salads for dinner and, on the way, I found an early Spring daffodil. A good sign?
After dinner, Marianne managed some art time, as I recall anyway. I am writing this a few days later and details fade. In any event, her art studio remains a go-to escape, sometimes to study, sometimes to paint, sometimes to chat with artists, family, friends, and artist-friends. My escape, besides Warriors basketball, is puzzles, so I started a 700+ piece Liberty Puzzles map of France. This may be my hardest one ever!
The next day, Zarxio pain returned, steroid redness and swelling showed up, and chemo lethargy piled on. The "it's-not-fair" feelings came back too. Marianne's Mamo chair and the art room got extra use and I hung around working the new puzzle, finishing a dull book, watching TV basketball, and generally trying not to think. For each of us, thinking too much may be the worst part of all this.
Friday was the week's nadir. An early call from a Kaiser oncology nurse, to follow up from the Wednesday infusion, was disturbing. She was hard to understand and did not seem to know how to hear our own words and concerns. She handed the phone to a second nurse and things were a bit clearer, but still the message was not good. First, they were saying the treatment was prescribed to be six cycles of three weeks each, not four as we had believed. And Zarxio, the bone pain thing, would be a part of every infusion. It was overwhelming.
Late in the afternoon, Doctor Box called for further followup. Her calls are difficult. I think it's because she knows so much and feels a need to transfer all that knowledge. Sometimes we can handle it, but sometimes not. This call was a bit of both. I think we learned that, indeed, her prescription is six cycles, but the oncologist would be satisfied if Marianne tolerated at least four without too-severe neuropathy, white cell depression (and infection risk), and overall weakness. Zarxio would be given based on cell count, but not for this next week. It's still overwhelming, but a bit more understandable. A journey.
We finished the day with Zoom games with Jen, Brian, and Geoff. This took an effort, but the distraction was worth it, and we managed to not lose both rounds of Codenames. After dozen's of weeks and rounds playing, we are no better than at the start, but it's a process, not a contest and we like the process.
Saturday started with a rosy sunrise and quiet time spent at my messy office desk. Marianne slept in just a little and woke up free of the nagging bone pain. We enjoyed our regular morning coffee and conversation. Normalcy was reassuring.
Later, we enjoyed a trip to the outdoor farmers' Market, one of the few destinations we feel comfortable at, now that Marianne is in chemo and more susceptible to infections. The market offerings are in fact all from local producers, so the bounty is winter-limited, but still as fresh as can be, here in America's garden. We do get to remind ourselves that the "worst" of winer weather is over, so the market will only get better in 2022.
The balance of Saturday and the start of Sunday were completely quiet. I suppose, in pre-covid and pre-chemo times, we would have enjoyed a restaurant meal or two, but hanging at home was OK too. We have an excellent chef. If the 49ers could have won their afternoon playoff game, it would have been a good Sunday.
They didn't and it wasn't. In addition to the last-minute defeat of the Bay Area team by the evil Rams from LA, Sunday included new signs of our house elephant. Marianne was tired, but that's expected and addressed by taking things slow. Other chemotherapy side effects also showed up, starting with a neuropathy session. It's a sometimes painful tingling of the extremities (feet, hands), common with the type of chemical Marianne now receives. It is expected to get worse as therapy continues and may remain months after. The prospect is frightening.
The weekend also featured the start of chemo hair loss, prompting a call to a hair dresser who had said she would do the unavoidable and cut off all the patient's hair. We know it will grow back, as it has over the last two years since Chemo Round One, but no one looks forward to the process.
Monday was OK. The extremity pain and tingling subsided. After a trip to Kaiser for EKG and blood tests needed for Wednesday's infusion, we celebrated with pastries at the Pariesien Bakery in Clovis. It's not exactly healthy, but we get a break sometimes. Back home, Marianne returned to the art hut and routine. I visited Vern and then worked on my almost-impossible puzzle, before a winning Warriors game. It's all normal and good.
That finishes January.
One day at a time.
Stay tuned,
John and Marianne.