Dear Family, Friends, and Diary,
The plan for this diary was to pick up from the in-hospital event stream I did for Marianne's lumpectomy. That was done in real-time to provide a uniform and timely answer to all those asking: "How's Marianne?" Since that Thursday, life continued. People continued to ask about Marianne's condition, but doing diaries in anything like real-time became ... complicated. Now, a couple of weeks later, I am backfitting a day-by-day diary, partly for our own objective record, but also because that's the tradition of this family-and-friends website. We have recorded mostly good times, but sometimes not-so-good.
There is more detail here than might seem to make sense, but I think I wanted to capture reminders for ourselves of changes, so we remain realistic when we think things are getting worse, better, or stagnant.
Thursday, November 7
We made it home about 3:00, welcomed by flowers inside (thanks Claudia and Ward and Zandy and Bob) and fall colors outside. For this whole week, I found I took pictures as therapy, sometimes of fall colors, sometimes of our neighbor's roof project, and sometimes simple yard scenes. I recommend it.
Soup dinner was courtesy of neighbor Joan. Wine was for Gabby and me, not our just-released hospital patient. I think we three were all trying to settle down from all that happened. I know I was.
I also know I appreciated hearing cheerful talk from Gabby and her mom. They have a special relationship and it came through extra this day.
Just 24-hours after her operation, Marianne was feeling pretty good, weak perhaps, but good. (Pain was under drug control.) Gabby drove her mom over to visit HER mom, aka Mamo. By all reports, the mothers and daughters were all relieved that Marianne was out and about.
While they were out, I took advantage of the break for a gym workout and, back home again, Fall pictures on Cambridge Ave. I think I needed the normalcy of a workout, even if it did hurt a bit. It is discouraging how quickly one loses conditioning at this age. (or ever?) Of course I had to think about Marianne and wonder how long it would take for her to return to her gym and Zumba classes. We all need normalcy.
Dinner was a delicious pot roast from neighbor Nancy. Thanks. Post-dinner, the girls sat on the TV room couch and chatted more. They do that well.
I stayed busy with pictures and the roof-project diary. My therapy.
Early Saturday, Gabby had to return to her family. We were thankful they had released her for a couple of days, but it was time for her to get back to the hectic life of a young mom.
Marianne and I took a half-hour drive up into the foothill town of Coarsegold and our new favorite breakfast place: Wild Fig Kitchen. After breakfast, we took a side road over to North Fork, a road that included a four-mile section of narrow, twisty, rutted, dirt. Scenic enough, but slow and tricky. At least no one else had decided to use the road so we had the single lane to ourselves.
North Fork turned out to be not much, just an old logging village, cute enough, but not much to make it a tourist destination. Besides, by this time, Marianne was starting to slip. We headed home.
At home, we put the pasta shell dinner Susan made for us into the freezer and ate a few leftovers. By early evening, Marianne was beat (and I was worried, again.)
Sunday was a rough day. Marianne hurt inside, not in the area of the operation, more just stomach and that neighborhood. She was far weaker than she had been right after the operation, so she rested. Negative development is scary. I resorted to photo-therapy while she slept.
Dinner was barbecue steak. Simple enough for me to cook. We had received a tray of vegetarian chili from neighbor Blain, but had put it away for another day (Monday, as it turned out.). Food was not our problem in all this. Sleep was difficult, more for the patient than the care-giver, but still problematic.
Monday, Veteran's Day
After a difficult day and night, our Monday was pretty quiet. Marianne still had the stomach pain, and the worry of the unknown. We may be entering an era where "unknown" and "normal" blend.
My known was picture-taking, on our street and the next. And a quick picture of Cambridge Avenue's only kids. Stories abound from "the old days" when the street had a dozen or two.
Around 4:15, I joined the neighborhood crew on one of the Cambridge Avenue porches. Along with photography, this is my mental recalibration time. Marianne stayed home, napping.
However, at about 5pm, she called me very concerned with her mom and insisted on us taking the 13-minute drive over to Mamo's house. When we got there, Mamo did indeed need help, but she had forgotten that Ruben had gone to pick up Katinka from work. The need for help turned into a full-blown anxiety attack, strong enough apparently to telepathically send a message to her daughter. In the end, help was provided, Ruben and Katinka returned, and I was left bewildered how Marianne knew something was amiss.
By the end of the day, Marianne seemed better and she slept through the night. So did I.
We started the day with breakfast at The Sierra Nut House. No comment on "nut house" and our current situations. This Nut House actually serves simple but different breakfasts and lunches. A recommendation.
Marianne had arranged a morning appointment with her General Practitioner to see what the stomach pain might be and ask for a cure. He provided a very business-like diagnosis, reassuring, but mostly he just said to eat carefully and wait. The non-specific diagnosis and action plan was hard to accept.
After that, we returned home for normal chores. Marianne was still feeling punk, so she went to bed for a nap. I walked a bit, took neighbor roof pictures, and ended up with the wine-sipping neighbors on a front porch. More therapy, even if I passed on the grape juice.
Writing this days later, I have no idea how that day ended. Maybe I DID have wine?
Marianne woke after a good sleep, feeling much better. I even felt OK enough to leave her for a trip to the gym, my own physical and emotional therapy.
In the afternoon, it was back to Magdalena's house and more counseling. It was becoming clearer that Mamo's current living situation needed to change. She was getting too weak to help with almost any movement and, while Ruben has stepped up admirably, she needed more professional, full-time, help. Magdalena was not hearing it, however.
Thursday (14th - One week post-op)
We had a normal start of the day, me at "office" where Marianne joined for breakfast. Her operation recovery had gone well and further diagnosis and treatment was a week away. A period of peace.
In the afternoon, Father Reggie came over to visit Magdalena and provide some spiritual guidance. She found it comforting and Marianne kept her religious doubts out of sight.
Before daybreak, Marianne got a message that Magdalena had injured her leg in an accident during the night. She had slipped while being helped to get up and banged up her shin. We rushed over to help, but Ruben and Babi had already bandaged her so mostly it was just more counseling, to both the patient and the care givers.
At this point, Marianne and I had concluded that staying in the house needed to stop. Ruben agreed. Eventually, Babi agreed. Magdalena never agreed, exactly, but gave up fighting the move.
The rest of the day was incredibly busy. Ruben took Magdalena to Urgent Care for professional evaluation of the injury. Nothing broken, so bandages were all that was needed.
Marianne went to Nazareth House to re-start Magdalena's placement and, by late afternoon, a room was scouted and selected. I arranged for the hospital bed and movers to come on Tuesday.
Saturday (16th) and Sunday (17th)
A week later, as I am writing this, last weekend is just a blur. We spent lots of time with Magdalena, explaining the need for the pending move. On one level, she understood, but on every other level, she fought it. At almost 100 years old, we are lucky we can still reason with her, but it still hurts her, and all of us, to be moving her from her house of 60+ years.
The rest of the time was devoted to the practical parts of buying new things for her new house, while at the same time going through the old things to see what would need to follow her as she shifts from a three-bedroom house to a single room.
By Sunday afternoon, we were more than ready for the neighborhood cocktail party at Jon and Susan's. Thanks. (In normal times, I would have pictures to share of our neighborhood gatherings, but I am definitely off my photo-shooting game. I probably do need to keep up our visual record, but it seems impossible for melancholy - or worse - reasons. )
Marianne's morning was spent dealing with Nazareth House and making sure paperwork was in order and communication was open and clear. The staff has been wonderful, but is is still "a process" and not one at which we have experience. Everything takes more time and effort than expected.
Take getting a phone, for example. That was my job and how hard could it be? Over four days, I visited a half-dozen stores, bought an inappropriate phone at one (and had it connected) and then reverted to an on-line purchase that should result in a "senior flip phone", with big buttons, speed dial, and the same phone number Magdalena has had for decades. I won't know until it actually arrives. Soon, I hope. (Update: Not arrived by 26th.)
The afternoon was spent supporting Magdalena, both counseling at home, and for a late-afternoon doctor appointment. For that appointment, we arrived at 3:00 and waited for 90 minutes before a harried Dr. Lynch came in to address the nine-points we had on our list. He is tough to schedule, and wait times are ridiculous, but he does work hard and care. It's just that elderly folks require so much medical service.
The movers arrived early at Magdalena's house, with a truck far, far bigger than needed. The three guys made quick work of carefully packing and loading up a bedroom's worth of furniture.
At the other end, the furniture went into Room A11 in hardly any time at all. I suppose this would be called a successful move, since nothing was lost or broken, but it was also a graphic reminder of the shrinkage in Mamo's world - a house to a room.
Gabby drove down from Monte Sereno to help Marianne decorate and arrange A11 for HER mom. The goal was to place things in as familiar an arrangement as possible; desk next to bed, big chair, TV, etc. (After this picture was taken, we even brought over original artwork for the bare walls. I need another picture!)
Mamo, Marianne, me, Babi, Ruben, and Gabby all went out to a Chinese restaurant for a festive dinner. We over-ordered, part of Chinese family-style meals, and Magdalena may have been the hardiest eater. (The difficulty of moving Magdalena into and out of the car and onto and off of the restaurant chair was another reminder, in case we needed it, that time had come for the professional environment of Nazareth House.)
Mamo started her day with her "always breakfast" of two bear claws and two cups of instant coffee. One more difficult transfer into Marianne's car and Magdalena was driven away from her home of 60-something years.
At Nazareth House there was a slow whirlwind of activity. Marianne and Magdalena started with lunch in the dining room, the first of dozens of "new normal" for Mamo. While they ate, I moved in a car full of last-minute things.
After lunch, Marianne brought her mom to see A11, her new home. There was all kinds of help and formality needed: transfers from wheelchair to recliner, transfer of drugs to the nursing staff, last-minute papers to sign and communication to clarify. All the NH staff were most helpful and patient, but Magdalena remained upset and uncomfortable with it all: the wheelchair, the food, the care, and, mostly I think, the upset of well-established routines and control.
Marianne did excellent work at staying positive and promising that we would work on all difficulties, one at a time. I hung familiar pictures and new paintings on blank walls. Juanita, Magdalena's care-giver for the last few months, came by for a visit and that perked Mamo up. A piece of her former life and routine.
Babi took over from dinner on and reportedly the meal and evening were difficult for everyone.
Just to add to the all-is-breaking theme, I had to take my Jeep for service. The computer was saying I needed an oil change and a different computer was telling me I needed to get new software for yet another car-computer. And there were a couple of new rattles to look into. This minor maintenance and repair took two days, instead of two hours, an efficiency that seemed to resemble our efficiency at settling Mamo.
Marianne visited her mom early, and got mixed input. Breakfast French toast was OK, but everything else was still wrong. Another promise to work on all items, one at a time.
After breakfast counseling, Marianne went to Kaiser for a check of her pacemaker and download of six month of heart data. The electronic record showed a few apnea events, more than last time. Somehow, it doesn't rise to a level of concern. Too much competition.
Looking back from four days in the future, the rest of Thursday the 21st is a blank. No memory is a good memory?
This morning we had a meeting with Dr. Hill, the lumpectomy surgeon, and Carmen, the "breast cancer guide". Dr. Hill presented good news and not-so-good-news. The good was that the surgery is healing fine and examination of the lump indicated that margins were clear and the three excised lymph nodes were also clear of cancer. The other news was that her "Onco dx" score, and indication of likelihood of recurrence, was 40, high enough to warrant chemotherapy. Not what we wanted to hear. Not what anybody wants to hear.
Maybe "chemo" is a scarier term than "cancer" itself. We all have friends or family who have fought cancer and the chemo-aided part of the fight has always seemed the toughest. Cancer surgery is not unlike other surgery, of limited duration and with specific results. The radiotherapy that Marianne faces also seems of limited quality-of-life impact. But "chemo" conjures up a range of side effects and uncertain success. By design, it kills living cells, hopefully quickly-growing cancer preferentially to the slower-growing cells of normal life, but I imagine there is not a clear, dark, line between "quickly" and "slower".
Dr. Hill and Carmen said treatment would be the Oncologist's call (appointment Dec. 2), but their guess would be four chemo sessions, two weeks apart, followed by 16 to 20 radiation sessions, five days a week for three to four weeks. After that, five years of hormone therapy. Lots of testing along the way. "A marathon", in Carmen's words.
From Kaiser Hospital, we headed over to Nazareth House. Mamo still hates her new life. Lunch was tasteless. The bed was lumpy. The wheelchair is very uncomfortable. Her foot and knees hurt. And, mostly, her routines of years and decades have been stripped away almost overnight. She compared it unfavorably with life as a refugee in post-war Germany.
All we could promise was to work on things one at a time.
I started my Saturday as I often do with a Skype call with son Geoff. He told me of the family's week filled with flu and rain and normal life. He had recently learned that his application for a position at the National Security Agency had been denied. As a top-secret agency, they can't even say why. Frustrating, but he seemed resolved to carry on with his civilian job (a higher-paid one, with an easier commute and probably less stress.)
When he asked, "And how are you guys?" I calmly described the events with Mamo and then broke down. I am not sure Geoff has ever seen his father cry, but there you go. Even with tears, it was good to talk. We'll do it again.
From Skype it was off to breakfast and the rental car office and the Jeep dealer to pick up my car. No surprise expenses, in fact no costs at all. It's hard to say if the pesky rattle was completely conquered, but I considered the car as a good omen.
Over at Nazareth House, Mamo was somewhat less put off, the result of a decent night's sleep perhaps. Marianne managed a conversation with folks to clarify mutual expectations and that went well, confrontation avoided. Babi came to help and those conversations went well (enough - I only had to apologize once.) We attacked the uncomfortable wheelchair problem by testing out a standard chair the family already had (too hard), a top-of-the-line lightweight chair (still too vertical), and a back-adjustable standard chair. This last one seemed good enough, so that's what we stayed with. No news on the shipment of the AT&T-promised cell phone.
By late afternoon, Juanita had come to keep Magdalena company, so Marianne came home, exhausted, but in hindsight we could at least count a few small victories.
Marianne and I started the Sunday with an "European Breakfast": cheese, cold cuts, fruit, and a little bread. This was a tradition for us in the old country, comfort eating. From there Marianne left to spend a morning trying to address Magdalena's troubles. Reportedly, she could not provide solutions as fast as her mom generated problems. Babi took over after lunch. Even with helpful and skilled Nazaretth House staff, it seems to be a full-time job.
Marianne and I took a break and saw Ford vs Ferrari, a movie we both thoroughly enjoyed and then Marianne prepared another excellent meal, a "Sunday Dinner" as Magdalena used to say when she shared home cooked diner with us. That was just a few weeks ago.
The day settled into what seems to be the new normal. Morning is chores and exercise for me and Mamo care for Marianne. No victories this time. The AT&T telephone did not arrive. Food was still bad. Sitting was still uncomfortable. Personal hygene was cumbersome and upsetting. Marianne had a mid-day break to have nails done and then returned to her mom. Again, Babi took over by dinnertime.
For dinner this time, it was not "Sunday Dinner", more like "Bachelor Wednesday": hamburger patties, bread sticks, and red wine. Perfect for a somber sharing of our current situation, complete with tears. We need to come up with a (moderately) long-range plan with positive goals. Travel. When can we get back to serious travel, in America and beyond? Late Spring, 2020?
Another new normal; for me, quick morning chores, Starbucks office (for these diaries) and outside activities, including pursuing AT&T for Magdalena's phone. Marianne to Nazareth House. First status report is even more discouraging than yesterday.
The rest of the day was mom-related for both Marianne and me. Magdalena seems to need someone with her all the time. Marianne talks with her in their mixture of Hungarian, German, and English. I showed her some of her famous "Magdalena's Chapters", but they were not exciting enough to keep her awake. The Nazareth priest came by for a very quick communion delivery.
Mamo asked for lunch in her room, where she was more comfortable than she might be in the dining room. Understandable, but another shrinking of her world. The podiatrist came by and worked to fix a very sore toe. Another case of one-problem-at-a-time.
By the end of the afternoon, it was time for new folks in the Magdalena care team. Juanita and her son came by and brought a quesadia dinner, standard fare from the old days. Babi brought grandson Zaiden for even more activity, something Magdalena normally thrives on. With all that support, Marianne and I left, to prepare for our own Thanksgiving travel. It will be hard to not spent much of the next four days worrying about Room A11 at Nazareth House.
Stay tuned, especially for the Thanksgiving special from Los Gatos/Monte Sereno and Monterey.
John and Marianne