Dear Family, Friends, and Diary,
We start December with what? Complications? Sorrow? Fear? Mostly, a sense of being overwhelmed. Marianne is being initiated into the not-so-exclusive Cancer Survivor club, while her mom is slipping away in Nazareth House. I am watching and recording.
In the last few diaries, we have noted these two developments within the context of the rest of our activity. Now I feel these ARE our activity, at least for awhile. Should I continue to tell the stories as part of the almost-public "trotter.ws" record? Maybe. It provides an easy answer to folks who want to know "What's happening" and writing is a distraction and therapy for me. I hope reading and editing my ramblings remains a useful distraction for Marianne. So, here goes.
Monday, Dec 3
Marianne, Gabby, and I started the day with a good European breakfast again, suspecting there would be little time for the next meals. The chaos started almost immediately when we got to Nazareth House. Magdalena had not had a comfortable night, although her breakfast seemed OK enough. Marianne tried to reassure Mamo that we would work on the concerns, one at a time, and we left her under Gabby's capable supervision.
We had an appointment at Kaiser Permanente Medical Center to talk with Doctor Box, the Oncologist. She overwhelmed us teaching Cancer 101 in just an hour or so. Broadly, the future path is four chemo sessions in December, January and into February, followed by four weeks of radiation therapy through March, followed by five years of hormone treatment - pills.
As best as I recorded, the near-term details include: wait for a schedule; a Tuesday Chemo class, blood tests, other tests, arrange for a "cold cap" to hopefully limit hair loss, learn the required diet, talk with a psychologist, and start plans for what we want to do once radiation is behind us. Plus, for me, read books to better understand the enemy my partner faces. And cry.
Back at Magdalena's care facility, we came back to meet the hospice nurse who had arrived to treat Mamo. Hospice help is important, even in the Nazareth House facility, as they navigate Magdalena's ever-changing condition and provide family with professional assistance and issue informed, binding orders to the NH staff.
Nevertheless, it was not a good day for Magdalena. She slept a lot and then fussed about the things she fusses about. Family did our best to help, but everything falls short and this is hard on everyone trying to help. Mostly, Mamo wants to return to the capability and habits she had weeks ago, or even days ago. Sadly impossible.
Gabby left, to go back to her own family and obligations, and we thank them for loaning her to us. Katinka came for the dinner shift and put her mom to bed. This gave Marianne a break and, as I recall, we came home and had a glass or two of wine. No chemo diet yet.
Tuesday, Dec 4
This Tuesday was essentially all Magdalena care, although many of the details blend with other days. Marianne and Katinka divided up the day since the family is still not comfortable leaving their mom solely in Nazareth House care. Marianne met with NH management on this very concern and reassurances were given, but it will take a lot more action to restore confidence.
As part of her initiative for mom care, Marianne started calling Magdalena's friends to see who might visit. "George" (I can't spell his Hungarian name) immediately said he would come that evening and play the piano. Without a doubt, it was the highlight of the day.
After the concert, Marianne and I left, and Katinka again put her mom to bed. Schlaf gut.
At home, Marianne and I try to get in some chores, at least for an hour or so and then off to Nazareth House.
Magdalena is yet again weaker and barely audible, but she does manage to say "last night was terrible". So much of her concern is toilet issues. She feels the need to go frequently, and the process is difficult, requires one or two staff aides, and the lifting part can be painful. Marianne has watched, and the aides are as careful as possible, but Mamo is just so frail.
Marianne spends much of the morning making phone calls, almost all concerned with her mom's care. She makes one more step on getting the long-term care insurance people to proceed, though the policy's 90-day delay probably means no financial benefit in the end. Over $200,000 paid out, and nothing will come back.
Adding to the institutional stress, Rosemarie the NH Executive Director visits us and basically says they are kicking Magdalena out because her care is too labor-intensive. They are not set up for one-on-one care. We note that family is there 10-12 hours per day, but that doesn't seem to count. (True enough, since we can not operate the lifting equipment.)
The doctor does not favor any move. The hospice people say there really is no better facility and we need to work out a solution. For now, she is not moving.
Ruben and Flo and Steve visit Magdalena. Visits are always a welcome distraction for Mamo.
Susie the social counselor from hospice visits and interviews Marianne and me. Standard reminders of how to deal with the process of death and dying of a loved one. Simultaneous cancer treatment does complicate things and Susie's last recommendation was to get extra help we trust, in order to provide breaks from family care.
Katinka took over mid-dinner and Marianne and I went out to a nice restaurant to decompress. I'm sure Susie would have approved.
On the cancer front, Marianne learned that our Chemo class is December 12 and her first infusion session is December 20, three days before, perhaps, her mom's 100th birthday. We pencil in an overall schedule and determine that chemo and radiation treatment will end in April, 2020. We need to draw up options for our post-treatment lives.
Thursday, Day 16 for Magdalena in Nazareth House
Marianne and I were both up early this morning. We sleep OK, but when I wake up my head fills too fast to just roll over and go back to sleep. My Fitbit tells me if I have made my seven hour goal and, most nights, like this one, fall short. Collateral damage.
I start my day with writing a diary entry, sipping coffee, and reading the Fresno Bee, although there's not much there. It's a habit. Out my office window, the morning light catches the Japanese Maples, so I run out to capture the Fall colors before even these leaves disappear into the green trash barrel.
Marianne goes to her mom's place in time for breakfast while I catch up on a few chores. Reports were that mom ate well. Apparently pancakes are still a favorite. The rest of Magdalena's morning was busy, with a nurse visit, an in-bed bath, clean clothes delivery from Ruben, and Marianne's visiting.
I took over when Marianne had to run some errands and my care was little more than just watching Mamo sleep. I think she is starting to sleep quite a bit more, a stage in the process, according to the little blue pamphlet left by one of the hospice workers. Part of shifting inward, melancholy but at least she seems peaceful.
By mid-afternoon, I had left for home and Marianne followed an hour or two after, leaving Mamo care to Katinka and Juanita. Reportedly, Magdalena's first task for Juanita was to write some checks for pending bills, a responsibility that the almost-100-year-old still proudly welcomes.
On the other front, the elephant in the room labeled "C", I continue wading into the book Dr. Box recommended: "The Emperor of All Maladies, A Biography of Cancer". I have only made it to the history of the 1940s, 50s, and 60s, and it is very sobering. Encouraging too, however, as cancer has gone from hopeless to, in many cases, curable, in less than our lifetime. I will read further and hope for more positive news.
I also called "Chemo Cold Caps" about a "cold cap" for Marianne. This is a treatment for chemo patients whereby hair loss is often minimized. "Sharon" answered the phone and proceeded to answer all my questions and more. She was a reassuring combination of warm and matter-of-fact as she noted that business had recently picked up due to October being Breast Cancer Awareness Month. There's others like us out there.
A quiet day. Marianne sat with her mom from breakfast until Katinka and Juanita took over at about 3:00. Marianne reported that Mamo spent a peaceful day with the two of them holding hands for hours, sometimes talking and sometimes just being together, a comfort on both sides.
I spent almost all day doing normal things. I even managed a trip to Fitness Evolution, my gym I'd not visited in almost two weeks. In the afternoon, Marianne and I had time for an errand or two and dinner at Mad Duck, a favorite for brewery food. Once Marianne shifts to a chemo-patient diet, we may need to eliminate alcohol and other-than-safe food, but for another couple of weeks, we can splurge a little. Anyway, I think it's the ritual that matters more than the food or drink.
For dessert, we stopped at Ampersand, our neighborhood ice cream parlor with the best selection in all of Fresno. I think this too was part of our diets-can-wait evening. Across the street, we visited Ma Ly, at Vernissage Gallery. Ma and Marianne talked art and resurrected plans for a nearby show sometime soon. Hopefully, Marianne can be inspired to re-start her creative efforts. When time permits.
Saturday, December 7
Another quiet day. Marianne's morning turn with her mother seems to have settled into a routine, if two quiet days in a row constitute "routine". Family friend Kati visited for a couple of hours. Nice.
I am able to slip back into my normal as well, almost. Just to make sure we are not too complacent, the check-engine light in my Jeep went on, so it was back into the shop. Complex things break when they age. At least this one is covered by an extended warranty.
On Sunday morning we started early, with normal activities. I Skyped with Geoff and phoned Brian later in the day. Good to touch base, even if my side of the conversation is dying, death, and cancer. Sheesh. At least their sides are about more positive things, like kids in school and Christmas season activity.
Marianne had the afternoon shift with Magdalena, so we had a chance for breakfast out and a twenty minute photo excursion. The Fresno State vineyard was winter-bare and the cloud-shrouded and snowy Sierras spanned the eastern horizon. I wonder if I will be able to get up there this winter for snow pictures.
Marianne left before lunch for Nazareth House and I tried to get into the Christmas spirit by finding all our decorations. I found them, but judged that it is a two-person job to bring them down from the garage attic. I need my partner. Always.
In the afternoon I visited Marianne and a sleeping Mamo. Magdalena's heart is relentlessly failing, no longer able to keep the blue from her hands. Marianne negotiated permission for a wheelchair ride to the main dining room, going against the day-nurse's advice to no longer move the frail patient. It is a trade-off between Mamo's pride and her pain. Pride won this time. Marianne reports that Mamo is still fussy about food, even if she eats very little. Cheerios are her new snack of choice. We need to remember her from earlier times when she would clean her plate, as long as the dishes were German or Hungarian!
My only cancer activity was finishing "The Emperor of All Maladies, A Biography of Cancer", 500 pages of tough reading. In the end, I had to conclude that receiving a cancer diagnosis in the 2010's is far better than receiving such news in any previous era. Earlier, diagnosis promised a future of hopelessness, drastic surgery, debilitating bouts of hyper-aggressive chemotherapy, pain. And precious little added time. Now, some cancers have very specific treatments, essentially cures. Most cancers, including Marianne's, are treated with combinations of not-radical surgery, not-debilitating chemistry, targeted-and-controlled radiation, and some addition based on genomic studies of a specific cancer's vulnerabilities. And a promise of many more years is now reasonable.
A separate day for Marianne and for me. She started her day feeding Magdalena breakfast at Nazareth House, and stayed with her mom until late afternoon when Katinka took over. It was a relatively good day for Mamo, a bit of pink back in her hands, ate a little lunch in the dining room, but mostly slept. Nevertheless, she remains frustrated with her very limited strength and ability to do anything at all. Not the end we would wish for ourselves.
My day is retirement chores: annual blood tests at Kaiser (nothing remarkable); retrieve the Jeep from the shop; exercise; run a couple of things over to Nazareth House; read some, in a very quiet house; fix a simple beans and rice dinner for two.
After dinner, Marianne and I watched a "cold cap" training video. The 13-minute show ran through all the detailed activities needed for the hair-preservation-during-chemo process to work. Its is complex and, for me, intimidating. It was also a reminder that accepting chemo is volunteering to be poisoned. What could go wrong? (My recent reading might answer "plenty", but we'll ignore that for now.)
Plan-of-the-day: Morning chores at home and at Nazareth House; afternoon class in chemotherapy at Kaiser Permanente Medical Center. Two paths.
Mamo appeared slightly less weak than the last two days. She was awake and lucid enough to express dismay at everything that is slipping away from her. Marianne did her best to console her mom. I visited before lunch "to hold some hands", of both mother and daughter. Mid-way through lunch, Ruben took over, a rough-hewn guy being asked to care for a fragile patient. I have faith in him, even if his eyes showed some self-doubt. Marianne and I left them for our second path.
Tuesdays are Chemotherapy Class days at Fresno Kaiser Medical Center. Marianne and I joined five other chemo initiates and their helpers at 2:00pm. Frances, the chemo nurse, introduced the class with "No one wants to be here" and started on the 69-page PowerPoint slides. We left three hours later, completely overwhelmed.
Rana, the social worker, described a dozen or more organizations and clinics where cancer patient can get help, everything from wigs to disability insurance. The amount of help available is only somewhat reassuring, because each place has a problem they are trying to help solve. So many problems.
Most of the class was Frances describing the details of chemo and immunotherapy: where, when, and how the medicines are given. We learned about "PICCs" and "Ports", implanted devices to make infusion easier for those with a very long road to go down. Marianne's road is four rounds, relatively short, so she will probably do with vein pokes for each session.
The list of possible "side effects" is discouraging. Chemotherapy chemicals are poisons and they attack everywhere: hair, mouth, digestive track, and each blood-cell type. Patients are given drug kits for nausea and diarrhea; things to take for constipation and dehydration; recipes for mouth washes; instructions on hygiene to minimize risk of infection, particularly during the week to ten days after infusion, before white blood cells recover; how to handle fatigue and anemia due to the death of red blood cells.
Hair loss is variable, but with Marianne's drugs (Docetaxel and Cyclophosphamide), essentially certain after two or three infusions. The Kaiser nurses said a few patients have used "cold caps" to prevent loss, and we could try. For us, that's still under discussion.
After class, we stopped at the pharmacy for anti-shingles medicine. Frances hadn't even mentioned shingles as a possible complication, but apparently it is. Then we went to the lab for a blood draw, something that would need to be repeated 48 hours before every three-weeks-apart infusion session.
We went out for a nice dinner, talking about and not talking about the elephant, trying to dream about what we will do when this pair of paths is trod and we can start a new one. Target: April, 2020.
Neither of us slept well at all, too alcoholic a dinner, too many thoughts. We got up early and went about our new-normal days: I ran what errands I could while Marianne went over to Nazareth House.
Magdalena's day was her new-normal too, mostly in bed, occasionally turned to prevent bed sores. She has never liked sleeping on her side, and now she must, one more increment in loss of control. Marianne feeds her breakfast and lunch, nothing she likes. They fall back on coffee ice cream, rice crackers, and cheerios, Mamo's choices. Marianne promises "puten schnitzel" (breaded turkey) as soon as she has some time. Katinka's Christmas decorations add a small corner of seasonal color.
After Marianne's shift with her mom, we hurry over to Skookum for a Christmas tree and wreath. ("Skookum" is Pacific Northwest jargon for "solid" or "quality". It was a favorite word of my Dad's.) The Oregon family business has been selling Christmas trees and decorations here for decades. They are a vertically integrated business, planting and growing the trees, trimming them, hauling them to Fresno, and selling for a few weeks, from the same normally-vacant lot. Clippings are crafted into wreaths and swags. Buying here has become a tradition for us. We'll be back next year, God willing.
After a good night's sleep, Marianne and I started our days. She went to Nazareth House and I did a few chores before relieving her so she could do some required activities.
After Marianne left us, Mamo's mood was somber. She whispered that she was so worried about "Martika's pain" and I reassured her that Marianne's cancer has no significant pain. "It's not that kind." I did my best to assure her "She has good care. We'll get through this". Now I need to believe.
Soon, aides lifted her to her wheelchair and we rolled off to lunch in the care center dining room, a discouraging place for those of us that can look around. Fortunately, Magdalena's vision is almost gone, and all she notices is that the food is not to her liking. She has never particularly liked tortillas, rice, and beans and at almost 100-years-old, was not starting today. Instead, we ordered one of her standard meals: quesadilla, salad, coffee ice cream, and rice crackers. This was her everyday dinner at home, well before the transfer to Nazareth House. A bit of normal.
I chatted with Frank, her table-mate. We had exchanged hellos before, but with more time, we could actually have a conversation. He, too, is in his 90s and physically weak, but coherent and willing to tell stories. Mostly, he talked about children and grand-children and how their lives had moved beyond Firebaugh, the San Joaquin Valley town where Frank helped run a large family farm operation in California and Arizona. He was interested in Magdalena's story too, and asked about our own world travels. At the end, he softly commented that this was not how he wanted to end, "but what can you do?" Lots to think about.
After lunch, Magdalena and I chatted and she seemed reasonably settled. She mentioned the story of Peter Varosy, a classmate from the Waldorf School in Budapest, 90 years ago. Peter too, had a video story of his time in school and I played it for Mamo. She fell asleep listening to the old story in her old language. I felt it was a privilege to care for her.
After the nap, there was the struggle with necessary functions, aided by a visiting nurse and a pair of Nazareth House workers. I thought about the last year's collapse of Magdalena's world, from videos of Magdalena's Chapters though shrinking personal space: a house; a 300 square-foot decorated room; a care center room half that size; and now the 18 square feet of a hospital bed. A year ago it was animated stories, now bare whispers, syllable by syllable. I think I will choose to remember her from the videos.
Juanita took over at 4:00, smiling and cheerful as always. She and "Mrs. Nagy" would busy themselves with Magdalena's mail and bill paying, remaining pieces of independent living.
On the other path, Marianne went to physical therapy lesson two, getting good grades for implementing the exercises of lesson one, and being instructed on more advanced stretches to repair any mobility lost by the lumpectomy of a few weeks ago. Then, after a CPAP-machine consulting session, a minor complication in her medical story, Marianne started shopping for a wig. (She had opted to bypass the complication of "cold caps" in favor of the more usual path for strong chemo patients.) She was not encouraged, despite a helpful, wigged, young woman who showed her options. So many things to think about.
Back home, we manged to erect our Christmas tree, although we ran out of energy before we could add the lights and decorations. Maybe tomorrow.
For dinner, I fixed a cheese and cracker plate for us, something that we would normally wash down with wine, but alcohol is off the menu for the foreseeable future. Another complication of the poison of chemotherapy. So many things to think about.
Friday the 13th, what could go wrong? (Spoiler: not much, actually)
The morning was our new normal; chores and gym for me, Nazareth House for Marianne. Today was not a good day for Magdalena, very tired and developing a painful lump under her arm. This prompted another doctor visit, but there's not much fixable, just renewed focus on comfort.
Mamo did not have enough energy to get into her wheelchair for breakfast or lunch. The highpoint of her day was most certainly a quick visit by friend Ildico.
Katinka could take over Nazareth House duty early enough to allow Marianne to join the Christmas shopping crowds. She has been more holiday-productive than I have been. Before we met for a mediocre restaurant dinner, I stopped by neighbors to chat. Joan and Vern always offer wine and wisdom and I needed the second, even if we are not drinking for now. (Interferes with chemo preparation and recovery.)
Back home, "we" (mostly Marianne) skillfully decorated the tree and other parts of the house. It's a minor victory and a good distraction from the two elephants in our rooms. I do hope we don't end up associating this holiday season with less-than-jolly happenings. It took Marianne years to cure my own family-related holiday melancholy and we don't want to throw away that progress.
Merry Christmas to all.
Saturday and Sunday
These days are blending, but I still want a reasonable record of "how are we?"
First, how is Magdalena doing? Not well, is the short of it. She did not make it out of bed on Saturday or Sunday, the first time she has turned down all meals out in the dining room. Even when she hasn't been eating much at all, she had always sought the change of space. Mamo is mostly concerned with the unknown of what she is facing in this final stage.
Marianne and Katinka continue to sit by her bedside, supplemented by husbands and a few friends for short visits. A week away from her 100th birthday, we make plans for small celebrations; Saturday with the Hungarian community, Sunday with family, and Monday, her actual birthday, with the Nazareth House community. These are challenging goals.
As for "Path 2", Marianne and I are reviewing the notes we've taken concerning chemotherapy, making sure she has everything ready for her first infusion on Friday and the weeks after. For me, it's the unknown of her reaction to the chemicals that is worrisome. Doctors and nurses give lists of adverse reactions and then say "everybody is different". We are all recognizing how little we really know and control.
On Saturday evening, we invited ourselves over to Vern and Joan's for chatting. In the recent past, this would have been "over for wine and ...", but now we make do with just the talk part. It was a good visit, with new stories. We ended with one song from a Joan Streisand duet CD. A drippy sort of song, just what we needed.
For practice and my own therapy I took neighborhood Christmas photos on the walk over and back. Here's the whole collection.
Our Home, as decorated as it will be this year.
Vern and Joan's - very seasonal
Five other nice old Cambridge Avenue Homes.
(Sorry they are so dark. I need more photo practice!)
Monday (16th) and Tuesday
Two days worth of our two-paths. It's getting harder to consider posting something everyday because the days are not terribly remarkable. A good sign, I suppose.
On Path 1, Magdalena's path, Monday was a bad day, with virtually no energy. Tuesday was better, still not leaving her bed, but Marianne says she and her mom had good conversations for much of Marianne's morning-to-afternoon shift. Mamo was sleeping for my afternoon visit, looking as frail as ever. Despite that, we are planning for the 100th Birthday celebrations less than a week away. God willing.
On Path 2, the elephant's path, nothing much new to report. First chemo is on Friday and, as that appointment approaches, both the patient and her caregiver are anxious. We read a bit more, review our chemo class notes, and talk, just a little. Chemotherapy is just such a serious reminder of a serious disease.
Ruben took a couple of hours this morning with Mamo, so Marianne and I had a chance to dine out for breakfast before her Nazareth House time.
We went to Fresno Airport, not the big one identified as FAT, but the old one, Chandler Executive Airport. We had visited the in-town airport weeks ago to take pictures of the Art Deco buildings, but this was our first try at "The Flight Line Cafe". Our eggs and pancake breakfasts were very American traditional, but the lunch menu is pure Fresno: one-third burgers, one-third Chinese dishes, and one-third Mexican standards. Our food was good, and the location unique, so we will try again.
When Marianne got to Nazareth House, she reported that her mom was again not doing well. This breaks her heart. However, as the day wore on, Mamo talked a little and seemed to improve, a bit. After her turn at mother care, Marianne had some time for personal care (fingernails) and shopping, good enough therapy for an improved outlook.
A quiet day again. Magdalena is not doing worse and that's the best we hope for nowadays. Marianne's morning shift goes well and I take over at 1:00. I value the time, although I can do nothing more than give a few spoonfuls of water and move the hospital bed a little up and a little down at Mamo's whispered request. I will remember these moments.
Marianne left for a couple hours to get her hair washed and dried. Ironically, she had finally found a Fresno hairdresser she likes. They came up with a plan, both for cutting all her hair off when chemo makes that inevitable and recovery color and care in the future, when all the chemo poisoning is over. It starts tomorrow.
And this is the end of this particular diary, not because the two paths are complete, but because the pace of activity will change, and get even more complicated as we blend in family visits, Magdalena's 100th birthday, chemo, and Christmas.
I'm not sure how this will work, but stay tuned.
John and Marianne