Dear Family, Friends, and Diary,
We are starting this diary on the first day of Marianne's chemotherapy. Some weeks ago, Marianne said we would face this challenge with humor, to maintain our sanity. Privately, we've faltered a bit here and there, but it's still a goal. Now we face chemo, a family gathering for a 100th birthday party (God willing), and Christmas, a season that for me still contains childhood ghosts. It's all so complicated.
This diary will draw on the license to laugh, or at least smile, in the face of challenges. Let the days begin.
Friday, December 20
We started with breakfast at Starbucks. It just seemed right to start in a routine way, as if we were on a trip. In a sense, we are. Besides, our neighborhood Starbucks just opened a few days ago, and we needed to make sure it is up to neighborhood standards. It is. Now we need to replace the dozens of used car lots and run down buildings that share our part of Blackstone Street with other new establishments.
Kaiser Medical Center is about 20 minutes away, so we made it to the third floor clinic in plenty of time for the 9:00 appointment. Nervous as we were, I think we made it much earlier. That gave me time to take a landscape picture. Fresno landscape.
At 8:50, Marianne was checked-in by the aid and I started taking my notes. It's what I do on these days, partly for reminders, but also to keep busy.
Promptly on time, Marianne was brought into one of two infusion rooms, and we were offered our choice of open chairs. All six stations would eventually be filled with patients, each with a different story. Marianne was the only hirsute novice. As we learned bits and pieces of others' stories, we were humbled by the quiet strength of people who have gone through surgeries and round after round of chemo.
Nurse Eric was in charge of Marianne's treatment. He patiently went through every step, starting with his skilled insertion of the IV in the back of her left hand. This seemed a good omen. She was given pills (Zofran) and a 30-minute drip (Decadron) to counter nausea and other expected side effects.
Finally the main chemo agents were fed into the IV drip: Taxotere (60 minutes) and Cytoxan (30min). Eric combined each with a summary of the actions of the chemicals, essentially poisoning faster-growing cells, ideally cancer cells among them. He also ran down the list of "common" side effects: nausea, diarrhea, mouth sores, numbness in fingers and toes, hair loss, fatigue, infection, and nail changes. Plus the "less common" and "rare" complications. Plus the complications of some of the anti-side-effect medicines. Yes, it was scary.
By noon, we left Kaiser, shell-shocked once again, but also a bit more settled at understanding at least the process of chemo infusion. One down and three to go, followed by radiation.
Marianne was feeling good enough to stop by her mom's bedside at Nazareth House. Family friend Kati had watched over Magdalena in Marianne's stead and I think it was a sobering experience. Mamo is looking more and more like just the skeletal remains of herself. I find I have to have old pictures to remember, such as these mother-daughter scenes from a visit with us in Kiev, years ago.
After the visit, it was a Pho soup lunch and back home. There we found a package from "Goldie", a friend of Marianne's from college days. In the package were an assortment of wigs, from a past period in Gayle's life, when she chose to be a different person from day to day. Will these hand-me-downs make it into Marianne's wardrobe? Who knows.
Meanwhile, the side-effect warning had said nausea normally hits between 7 and 10 hours from the time of the chemo infusion. Sure enough, Marianne felt queasy at about 6pm, but one Zofran pill settled things down and we finished the day with nothing worse than a tired patient. We'll count this as a good day.
When I wrote this diary on Monday, Saturday seemed like weeks earlier. The following is my best recollection, but there must have been other activities because I do remember being very tired by the end of the day.
After breakfast, Marianne headed out to Nazareth House and I worked on home chores and errands. Part of this was searching through my photo library for Magdalena pictures to print for her upcoming 100th birthday. The library contains at least 80,000 photos and, while Mamo is in less than 1% of them, that's still a ton of searching. After finding several hundred, culling and editing is very time-consuming. In the end, I arbitrarily chose a few dozen and went to the camera store for prints. Good enough.
Meanwhile, Marianne was with her mom and reported that Magdalena was doing poorly. Our standards for "well" and "poorly" are pretty humble and sobering, but we were hoping for a bit of progress before the Sunday 100th birthday celebration, or just not more slippage. We'll see.
On a much more positive note, I headed to Fresno-Yosemite International Airport (aka FAT) to meet Brian, Jen, and Richard. I love FAT because, even at the height of the Christmas travel season, parking is easy and convenient and there are absolutely no crowds in the Sequoia-themed lobby. Their flight from Denver was an uneventful straight line and the trio walked out of the airport concourse exactly as scheduled. Nice to have them with us.
We made the 15-minute drive home (another FAT benefit) and joined Marianne for dinner. I think. Thirty-six hours later I can't remember.
I do remember that Marianne and Jen worked very hard on a birthday cake that turned out ... interesting. (The oven had self-shutdown mid-way and the disaster was not recoverable.) With that, we all gave up and went to bed. Hopefully, tomorrow will go better.
Sunday, Magdalena's Family Birthday Party.
Sunday would be a very busy day, but we started with a fix-it-yourself approach to breakfast. With some mom coaching, even Richard did his own preparing. We visit him only occasionally, so seeing him "suddenly" getting both taller and more grown up should not be a surprise, but it is.
From breakfast, it was off to Kaiser for a Zarxio shot, a bone-marrow boosting drug intended to counteract the chemo killing of white, red, and platelet cells. Marianne was scheduled for a daily shot for five days. We asked about side effects and were told "just some bone aches", whatever that means, really. By now, fatigue and digestion side effects were already kicking in, so news of one more possible effect was not welcome.
Marianne had no choice but to work through the chemo side effects because she wanted to make this Sunday a meaningful family celebration of Magdalena's 100th birthday. Mamo's birthday was on December 23rd, but it worked out that we needed the family gathering to be on the 22nd. That's OK, because she was born in Budapest, nine hours ahead of Fresno, so an afternoon party would be close enough to exactly 100 years.
While Marianne and Babi worked in the care center, Brian, Jen, Richard and I shopped for party necessities. First, was a replacement for the "interesting" home-made cake. The Whole Foods bakery came through with a big layer cake and on-the-spot decoration. Problem solved. Next, we went to The Paper Store for candles and left with three giant balloons: "1", "0", "0". I'll bet they don't often get three-digit customers!
Over at Nazareth House, we hung the balloons and passed around Magdalena pictures. (Many of these are available within "Magdalena's Chapters", in case you are curious.)
The family crowd included: Marianne and me; Katinka and Ruben; Gabby, Mamal, Ava and Sam; Henry and Zaidan; Brian, Jen, and Richard; Juanita (almost family) and her son Aden.
Magdalena was not able to get out of bed to join the party, so Mamal suggested we move her with the bed. Great idea.
Settled in, Mamo could properly receive attention from Katinka, Marianne, and all the rest of the family. Family who had not seen her in weeks or months were taken aback at Magdalena's condition, but throughout the afternoon, despite her weakness, Mamo smiled and made clear that she was hearing all the love being expressed and appreciated everything.
The celebration started with a performance by Megan and Ryan, a pair of young violinists who volunteer to do this sort of thing. They started with a medley of Christmas songs and finished with a series of wonderful classical pieces by Mozart and Brahms.
After music, we moved on to cake and pie, pizza pie. The great-grandkids were particular fans of the birthday meal, but no one turned it down.
Keri Kati and Aniko, a pair of Hungarian friends, showed up mid-way through and talked with Magdalena in their native language, something Mamo always has appreciated. One also sang Hungarian songs, a particular delight for both the birthday girl and the rest of us.
All in all, I could not imagine a better birthday celebration for Magdalena's 100 years.
Back home, Marianne rested and Ava, Sam, Rich, Brian, Jen, and I waited for Gabby, and Mamal as they finished their time with Mamo. Our job was to start preparing traditional Christmas tacos. It's Fresno, after all. After preps were over, Ava and Sam were taught a new game by Richard and family. It was nice to see the kids interact since our families so seldom cross paths.
Taco dinner must have been pretty good, because I was too busy to get any pictures. Trust me, pictures would have shown a happy group of nine around our Christmas-themed formal dining table. I think this was almost the first use of the table since last holiday season, another sign that we need more family gatherings.
While others cleaned up, Mamal and I took Richard and Sam over to Ampersand for ice cream. This too, would have made a cute picture, except the staff photographer was too busy ordering and eating.
Back home again, it was time for opening Christmas presents. I know it was only the 22nd, but our Fresno tradition has been to open presents on Magdalena's birthday and we were not breaking the tradition THIS year! (I took only a few pictures so, if any other participants want to contribute, email me.)
A good day, for sure.
Monday, December 23rd, Magdalena's Real Birthday
"Real" birthday celebrations started with an IHOP breakfast. Mamo would have ordered two pancakes "well done, both sides" and one egg, two pieces of bacon, and hot coffee, coffee reheated half-way through the meal. Unfortunately, we had to make do with just memories. Nevertheless, it was fun to have a family meal.
While the rest of the crew left for home or for Nazareth House, Marianne and I crossed the street and went into Kaiser Medical Center for another bone marrow booster. We also got renewed instructions about some of the other medication, instructions that my memory had completely failed at keeping right the first time. I might lose my chemo-Sherpa certification.
Our plan was for just a short visit, because Marianne was fading from her own medical complications and side effects. "Short" became relative, and Marchika spent good time leaning in and listening to her mom. These conversation are hard, on both sides, but it seems to aid Marianne's recovery and Magdalena's peace of mind.
A Fresno City Council representative arrived, ready to present Magdalena with a Certificate of Recognition on her 100th. As kitschy as it may seem, this is politics at its most local, the least complex of today's political environment. We can be honestly thankful.
Nazareth House staff next brought in a small birthday cake and sang Happy Birthday. These young women have provided Magdalena with cheerful care and comfort for her weeks in the care center and we appreciate their service. For several, the current work is a step on a path to a higher rung on the medical career ladder, and we wish them well, no mater where they land.
Back home, Marianne rested while Brian, Jen, Richard, and I puttered and chilled. Writing just a day later, I can not remember what we did exactly, except take stock in two days of birthday celebration and wishes for peace on earth.
Tuesday, Christmas Eve
After the birthday parties, Tuesday was pretty quiet. I was in charge of breakfast and, if I do say so myself, it was pretty good: eggs, bacon, toast, fruit, and veggies. I find I enjoy this type of cooking and it's fun to have an eager audience.
After eating, it was off to Kaiser for more Zarxio. By now, Marianne has felt the "bone ache" she had been warned against, along with several other internal side-effects of the chemo chemicals. The Kaiser nurse was, as usual, friendly and concerned. She explained everything about today's shot as well as proper action toward any side effects Marianne was feeling. If one has to feel miserable, it's good to be at Kaiser.
From there, we went to Nazareth House and I dropped Marianne off for her Mamo watch. Magdalena was asleep when I left and Marianne said she stayed that way most of the afternoon, a peaceful period.
My Sherpa duties consisted mostly of doing the grocery shopping that Marianne would normally do. On Christmas Eve, stores were full, but shoppers and clerks cheerful. While I shopped and eventually went back to get Marianne, our guests went to see the new Star Wars. Reviews of the movie were mixed, so its probably best I didn't go. I'm just not a movie fan.
Dinner was my job too, barbecued burgers. By the time we were eating, it was chilly outside, but this is California, we barbecue all year round. Besides, I am ending up liking this cooking stuff, although my repertoire is way simpler than our normal chef's.
The rest of the day was even quieter. Marianne crashed early and even Richard was off and asleep before we knew it. Tiring day all around. I chatted with Jen and Brian, me talking more than my share perhaps, but I enjoyed telling old sea stories rather than the weightier subjects of cancer, aging, and dying. That stuff is definitely not in the Christmas spirit.
In years past, Cambridge Avenue would be alight with candles, but that tradition was dropped when the organizers no longer had grandparents on the street. We probably need to resurrect the practice, but 2019 was busy enough. (Here is the rest of 2016)
Santa managed to find the visiting Trotters. Apparently, a LEGO set is very traditional for Richard and this one is based on yesterday's Luke Skywalker movie. Reports are that the stockings have the extra calories one needs for the cold winter weather.
I did my breakfast duties again: pancakes and a fruit salad, mostly from our own orchard. It seemed to be a hit.
Christmas breakfast out of the way, it was time for a run to the Kaiser Urgent Care Office where Marianne would get the fourth of her bone-marrow shots. Chemo-associated treatment is putting us into a category of "hospital frequent flyers", so we know where to go for service, even when Christmas closes the regular clinic. This sixth day after the start of chemotherapy was not starting well, even before this shot, but it could be worse.
From Kaiser it was Nazareth House. Magdalena was having another quiet day. Katinka was there too, just watching to see if anything could be done. Not much.
Val, a friend from the local Hungarian community came by and Magdalena whispered to him to sing the Hungarian national anthem. With an off-tune voice, but a solid heart, he sang and Mamo smiled. We all appreciated it.
Back home, Marianne worked on a Christmas dinner, while the rest of us mostly just goofed off. Jen and Rich did go for a walk, so they get some exercise credit. I haven't earned exercise credit in ten days!
Neighbors Nancy and Gene had invited us over for drinks before their traditional family Christmas dinner. Marianne had to stay home to rest (and to stay away from even more germs), but the rest of the Trotter family enjoyed an hour of chatting with the Towery family, surrounded by traditional Christmas decorations. This is a tradition we look forward to.
We left the party promptly, to allow the host family time to get on with their own dinner while we turned to ours. The salad and roasted vegetables and chicken were all exceptional, as I have come to expect from our #1 chef - ailing or not. The food was so good that we all started eating right away and I failed to get proper foodie pictures of each dish, only of the dishes themselves. Trust me, it all looked and tasted great.
After cleanup, we all retreated to TV, reading, or just resting before bedtime. This all seems like Christmas tradition.
Boxing Day (26th)
One tradition we've heard, is that the day after Christmas is called "Boxing Day" because that's when some presents get re-boxed and returned to the store in exchange for something better. For us, the present was Marianne's Audi. It needed to be returned to the dealer at 8:00am for service and investigation for why it had stopped running smoothly. While there, I looked for cars to exchange it with. Maybe next year.
Afterwards, Marianne and I had breakfast and planned the day. Our guests had been left to fend for themselves (they went to the zoo), but we had Mamo duty and an Oncologist appointment. The plan was to regroup with our guests for a Chinese dinner, sort of a Christmas season tradition borrowed from friends.
So, in a nutshell, how did the oncologist visit go? OK, enough. (" ... enough." is becoming our go-to phrase.) Dr. Box was her charming-but-overwhelming self. We had a page-and-a-half of questions and most were covered. Marianne was given an adjustment to her nausea medicine schedule and reminded that, if things are ever not going well, she should call into the clinic for advice. Current back pains are the bone marrow medicine doing its thing and should decrease soon.
On side-effects generally, I think we heard that for each three-week round, the first week is worst and, within that week, the first couple days are the most difficult. So, Marianne is just finishing the worst of the worst - except for that hair-falling-out thing in a couple more weeks.
Other tidbits: Dr. Box is a fan of "restorative yoga", so that may need to be added to the mix. She is not in favor of "fads" like the Ketogenic diet, even though it was mentioned in the Chemo Training. Window seats in the infusion clinic are first-come-first-served. Generally, the pharmacist will evaluate the usefulness of any diet changes or supplements, but Box did not believe any changes were particularly beneficial. Shots work, but eating should stay normal. Use a painter's filter mask if smells are too disturbing.
So many things we are learning, like it or not.
Since we had been reminded to keep eating normally, we stopped for cinnamon rolls after Kaiser. I think that's what Doctor Box meant.
After a short errand, we met Brian, Jen, and Richard at New City Restaurant for Chinese food. This has been a regular spot for when Marianne and I would take Magdalena out for dinner. We left a chair open for her. (Earlier visits to Nazareth House had been discouraging. Mamo slept, mostly, but managed a single whispered complaint: "this is a terrible situation". It is hard for us to recognize that she is indeed still aware. It is terrible.)
Two different paths today: Marianne and family guests. First, Marianne.
One week from her chemo infusion, Marianne isn't feeling well. Nausea is taking its toll, despite trying to implement the new nausea medicine program described by Doctor Box yesterday. As instructed, Marianne called the oncology clinic for advice and instead of understandable medicine advice, got scheduled for an IV Saturday morning.
Meanwhile, she managed to squeeze in a little time with her mom, but was distracted enough that she felt Magdalena was "drifting away" from her. Fortunately, Katinka has had more time this week because she is off work. Maybe Someone IS planning all this.
Keeping up the Kaiser-every-day pattern, Marianne had a session at the Kaiser audiology department, but stopped the work mid-session due to the nausea and came home to rest. Somewhere in here she also received word her car would not be ready until next week, after $1,100 in repairs. Sheesh, if its not one thing ...
While Marianne was on her odyssey, I tried some limited tourism with the visiting family. We have felt guilty about leaving them on their own so much and I was looking forward to at least a little Fresno show-and-tell. Our first target was Sorensen's art studios, an interesting collection of artists and craftspeople that is a convenient fall-back to show guests. Besides, I like taking pictures there. Oops, Sorensen's was closed.
The next option was Simonian Farms, a valley tourist destination with an eclectic collection of old farm and logging machinery and "stuff". I think the owners collect the equipment like kids collect Matchbox cars. The eight-foot tall tree cross section came from 100 feet up on a giant Sequoia and had tree ring markings going back a thousand years. Interesting ... enough.
On the back side of the Simonian parking lot, Dennis Simonian has erected a monument to Japanese-American farmer friends who went though WWII internment. It is a sobering reminder of an American past that we all need to not forget.
Our last destination was my new-favorite airport: Chandler Executive. The little family checked-in their leather-covered suitcases and settled into the carved, wooden, benches before taking a flight somewhere exotic . Or, at least they play-pretended they did. I have been to this lobby three or four times, and I had never seen anybody actually sitting here, but is is always easy to imagine the crowds from the 1930s heyday of Fresno City Airport.
Out on the flight-line, we watched a tiny black helicopter start up and slowly taxi out to the main runway. I'm sure this was a student getting in a little slow-hover practice. The little craft had the whole airport to itself and once near the runway it looked more like a toy drone. Interesting ... enough.
Back home, we kicked around long enough for dinner to be due. Our #1 chef being out of service, it was #2-prepared sandwiches again. I'm glad our guests are not too fussy. Thanks.
Marianne and I left the house early to get a healthy breakfast before she was subjected to whatever Kaiser had planned for her. Again, our guests would need to fend for themselves, but they seem to be able to handle.
Kaiser did not go well. We were redirected from Oncology to The Infusion Center, an over-crowded clinic that was particularly busy this Saturday. The staff asked us what we were there for and we asked them the same question. Eventually, we learned Marianne would receive hydration and a steroid, via an IV. The staff seemed put off that we asked questions. And, the first IV hurt and failed. Clear instructions on proper nausea medicine protocol never happened. Instead, the nurse just kept reading the label on the pill bottle, as if we were children. In the end, Marianne got a phone consult with the oncology pharmacist and he seemed to make sense. Besides, the IV had fixed the nausea.
After Kaiser, we went to see how Magdalena was doing. Katinka was with her and said her breathing had deteriorated and when we got there that was the case, deteriorated enough that we knew we needed to stay as much as we could. Nonetheless, we opted for a quick trip to the deli to get makings for dinner, only to get Katinka's urgent "Come back" call. We did.
By the time we returned minutes after leaving, Mamo had moved on from her struggles on this earth. We will remember her every day for a long, long time.
And, with that, I will finish this diary. More in 2020.
John and Marianne