I think we have finally set up a schedule with only 2 different day caregivers and 2 at night. I think the ones we have are a mix of pretty good and great. I hope James continues to agree. His confusion sometimes leads him to suddenly dislike someone for part of the day. He didn’t want one of our favorites near him for a few hours today.

He was very anxious for much of the day today, even paranoid. We had a visit with the hospice social worker and the spiritual counselor (Buddhist!) who works with patients regardless of their religious beliefs or lack thereof. In the hospital, the counselors were very interesting people and James loved spending time with them. One of those was a Muslim cleric originally from Izmir. He had a Ph.D. and his thesis was on Thomas Aquinas and Rumi! The social worker meeting went pretty well, but James couldn’t stay awake for most of time with the counselor. Later in the day we had a call with his niece the doctor and I talked with the hospice doctor. We may try a new medication if he becomes very anxious and agitated. However, that is likely to make him more sleepy, so I hope to avoid that.

His favorite chair for the breakfast room is a wood banker’s chair that he got many years ago when the police headquarters downtown threw some out. That was near his loft at Broad and Water, his first apartment when he moved to New York in 1985. The stretchers had come loose from the legs of the chair. Today our artist friend William glued them, tied rope around them, and twisted them very tight using some of our wooden spoons. He checked his work via a video call with John, another artist.

We are trying a sedative before bed so that James is more able to get in bed without anxiety. Tonight it worked pretty well, but he was even more sleepy as we got him in the bed and ready to go to sleep.

He’s having some visual hallucinations such as color outlines around objects. So far he is enjoying it rather than feeling scared.

Today again he ate more than previous days, which is great.

Frankly, I’m exhausted. It has been a week since we started 24-hour care, but we don’t have regulars for all of the shifts. Right now we have 1 person for Saturday night, 1 person for Monday through Wednesday nights, and different people for the other nights. We don’t have consistent aides during the day at all. The goal is to find people we’re happy with and limit aides to 3 different ones at night and 3 different ones in the day. Having new people so often means that I have to stick around to answer questions and help them with their tasks. We had one hot man who was interested in our Paul Sepuya book, so we hope he comes back. We have had a few people that we had to veto because they didn’t show enough patience with James.

He is nervous about going to bed and feeling comfortable, so it can take 30+ minutes to talk him into bed and get him to relax enough to fall asleep.

He eats less and less each day, but ate more food than usual today. A lot of evenings he drinks an Orgain protein and nutrition drink for dinner. Friends are bringing a lot of pastries in, so we are both having more of those than we normally would. We seem to be developing a sweet tooth that neither of us had previously.

He is very weak. I’m concerned about him continuing to use a walker. A few days ago he started to collapse while using it. The aide and I lowered him to the ground and he wasn’t injured. I called 911 so we could get help getting him back up. It took 90 minutes for them to arrive, while James was lying on a hardwood floor along with some pillows. Before the EMTs arrived, a 6’4” friend was here for a planned visit. He got James up into a chair. When the EMTs eventually arrived, we got James’s niece the doctor on speakerphone to give them a summary of his condition. They said his blood pressure was high and his blood oxygen was low (85-90%). They recommended going to an emergency room. We told him he was in hospice and wouldn’t go to the ER. A doctor from the EMT team talked with James on the phone and confirmed his decision, and that James seemed competent to decide not to go to the hospital. I’m glad he was clear enough to talk with the doctor.

We ordered a wheelchair for getting him around the apartment instead of a walker. It’s tricky to find one that fits in a New York apartment and its doorways. We also ordered a ramp so that he can go down the 2 steps into the living room. He is feeling very limited in the parts of the apartment he can visit now. Those should arrive by the end of the week.

We have an oxygen machine that he uses for 30 minutes when he feels out of breath.

Yesterday our usual barber, who has a shop on the ground floor of our building, came to the apartment to give James a haircut and trim his beard.

James’s C7 vertebra (C = cervical) is being destroyed by the cancer, leading to nerve compression and damage. This is causing weakness and numbness in his hands, especially on the right side. He can no longer write, and struggles to use his phone. Some days it also causes his voice to hoarsen or mostly disappear for hours. He has vision problems (double vision and lack of depth perception) due to a lesion near his sinus, and thus near his optic nerve. Most dsys he understands that we can’t do anything about his arms and hands or his vision. For many meals, an aide or I or a friend feeds him. He can drink from a glass usually.

Sometimes his mood is positive, but that is increasingly rare. He does perk up when friends visit, at least for a majority of them. He realizes that his concentration and grasp on reality are deteriorating. We haven’t changed his medication schedule in the last week, so this is related to the disease progression and not the pain medications. Some evenings he says he doesn’t know where he is in the apartment and asks me to tell him the layout. One night we sat in the gallery facing the living room with the floor plan of our apartment to make him feel better.

It has been a busy few days while getting everything set up with hospice and 24-hour care. We have met (either on the phone or in person): the social worker, two intake nurses, the pain management doctor, our hospice manager, and a spiritual counselor who we were told is Buddhist and doesn’t expect James to be religious at all.

Our daytime health aide started on Monday and the same man was here the last 3 days. He has been wonderful and is very patient and kind with James. It’s a 12-hour shift, so we can’t have him every day due to overtime rules. I haven’t figured out if I can get around that by paying extra.

We had to bump up James’s pain medication, so he is sleepy a lot of the day. He also is less clear mentally at times and a lot weaker physically. An aide holds onto him when he moves around the apartment with a cane or rollie walker. His appetite is greatly reduced, and the only time he eats a full meal is when he has oatmeal at breakfast. He sometimes has sweets with his coffee. Today I made him a radicchio salad with parsley and shallots to go with a savory croissant from a bakery, but he didn’t want to eat much of either.

Since January, he hasn’t been able to lie flat due to spinal metastases. Until today, at home he slept in mid-century modern adjustable sedan chair. No Lazy Boy for James Wagner! Yesterday our friend William disassembled the bed in the front bedroom and wrapped the mattress for disposal. The bedframe is now in the “north wing” as we call the newer part of our apartment. A porter from our building plus our night aide took out the mattress this morning and an hour later a hospital bed arrived. I was very happy that we were able to get him in the bed and comfortable. He almost immediately fell asleep at 7:30pm and is still asleep now.

We continue to have regular visitors and welcome as many as possible. James usually perks up when they’re here.

Our friend Paddy is now coordinating visitors for me. Let me know if I need to make a text or email introduction.

Sorry for the radio silence. It has been a couple of days of a lot of changes.

While we were in the ER, the oncologist told us that the cancer has spread so rapidly that further treatments aren’t going to help. As soon as we could get discharged (many hours later) we came home.

The goal now is to keep James comfortable and pain free.

The hospital’s social workers quickly filed the forms to allow us to start hospice. We met with the intake nurse yesterday, and I spoke to one of the doctors on the phone. The first set of medications arrived last night, but we aren’t planning to make changes to his current pain regimen yet.

Rather than only overnight, we will now have a home health aide here 24 hours per day. I will take 4 weeks of family leave starting next week.

James is in good spirits and relieved that we won’t be chasing pain treatment constantly as we have done over the last 4 months. He also won’t have to suffer through regular car rides to attend appointments.

We continue to have regular visitors and welcome as many as possible. Our friend Paddy is now coordinating visitors for me. Let me know if I need to make a text or email introduction.

• 3:45am I returned to emergency room.
• 5:00pm Spoke with oncologist about current physical condition and side effects of treatment.
• 11:20pm Discharged from ER. We were never admitted to the hospital to get a bed upstairs.

James woke up yelling from pain in his right elbow and upper arm during the last two nights. They were slightly ameliorated by heat and ice, but it took a while for him to be able to go back to sleep.

In the morning his right side became weak and he was unable to use his phone or write. He needed help walking and listed to the right. I called the oncologist’s office in the early afternoon and they transferred me to him. I described the situation with the pain and weakness and he told us to go to the emergency room.

Schedule

• 3:45 Arrival (wanted to make sure James at something before leaving)
• 4:00 Spoke with nurse then back to waiting room
• 4:30 Moved into ER
• 4:50 Talked with a doctor who said she was ordering a brain and neck CT scan
• 6:25 Taken for CT scan, returned at 7
• 8:00 CT scan results: no brain bleed or metasteses. A lesion in the C7 vertebra is causing a lot of problems, probably the pain in the right arm and weakness. The attending doctor tells us that she put in an order for admission. Pain management is the priority.
• 10:00 Told by nurse that even though less than 15 people in ER were waiting to be admitted, it’s likely that we will have to wait until morning because people aren’t normally discharged overnight.
• 10:30 Talked James into lying in a bed propped up instead of remaining in a wheelchair. He has been very groggy and a little disoriented for hours.
• 10:40 A friend arrives to relieve me for a few hours so I can take a nap and eat some dinner.

James was able to lie down for 30 minutes and complete his first radiation treatment. There was a delay when we arrived because the medications were at the main hospital instead of the treatment location. We waited a few hours before he could be treated.

We had three visitors over the 2 days of the weekend. One brought a podcast microphone and interviewed James about living in South Africa in 1974-1975 during the civil wars in Mozambique and elsewhere as the Portuguese left. Being James, he drove towards the war zones to check it out, experiencing checkpoints and full hotels with food shortages.

We’re hoping to do more of these interviews with various friends and post them online as audio plus transcripts.

Throughout the day James’s pain increased and by early evening he described it as 9 on a scale of 0-10. I called the oncologist’s office and received a callback from the doctor on call. She consulted with palliative care (pain management even though it sounds like hospice). They said it was safe to increase his hydromorphone pills. Those are supposed to be “as needed” since he has a fentanyl patch, but he needs them on a regular schedule. He is now taking twice the dosage daily that he was getting in the previous weeks. The pain nurse we usually work with said he would need to go to the emergency room if the pain couldn’t be controlled.

In the last few days, James’s vision has worsened significantly. He has double vision (binocular diplopia) and a lack of depth perception, which makes walking more dangerous. He saw the opthamologist who said she does not see toxicity from the infusions, but that one of his eyes isn’t tracking properly, causing the double vision. She said the opthamologists who treat this are normally pediatric specialists and she will refer him to one.

With additional pain medication and Lorazepam, James was able to be on the table and complete the simulation. The 5 days of radiation begin on Monday, so the chemo infusion is rescheduled to the next week.

Due to the cancer lesions, James’s bones in his spine, rib cage, and pelvis are fragile. Today while reaching for something sideways to his right, he felt a pop followed by pain. He probably cracked a rib.

To get started with the radiation of the spine for pain management, they first have to do a “simulation” to model a mask/helmet to protect his head and neck from radiation. They also pinpoint the locations that will be zapped and put small tattoos on his body. This requires him to lie flat and is similar to what happens during the actual treatment. Due to the problems with his spine, he hasn’t been able to lie flat without extreme pain for months. In this case we had to stop and go back home while waiting for a new plan of pain control plus placement on the table.

Second infusion. Side effect: some mouth sores. The oncologist’s office prescribed “magic mouthwash”.

First appointment with NYU opthamologist. She says he has 20/20 vision but he has trouble seeing because his brain hasn’t adjusted to the monovision approach used for his cataract surgery. We also had a routine follow-up video call with his neurologist.

First chemo- and immunotherapy by infusion. No noticeable side effects other than fatigue. This will happen on a 3-week cycle.

• Week 1 - both
• Week 2 - only chemo
• Week 3 - off, no infusions

Radiation treatment of the spine should occur on the off week, daily for 5 days.

James was in the hospital for a week in April due to cancerous lesions in his spine. He was there for pain management and a diagnosis of the cancer.

He has a higher pain threshold than anyone I’ve ever met. By March, he was in so much pain he started having trouble leaving the apartment or doing any tasks in the apartment. We couldn’t get an appointment with a pain management doctor for over a month, and in NY State doctors without that certification are limited in what they can prescribe. On April 15 we went to the emergency room to get him admitted. We were very fortunate that his niece Mary Jo, who is a former ER doctor, flew in while we were still in the ER to help work with the doctors. She stayed over a week until he was released.

We now know that his cancer is metastatic bladder cancer that has spread to his bones. The good news is that treatments are available that didn’t exist 2-3 years ago. He began a weekly treatment of chemo- and immunotherapy last week. He will also receive radiation treatment of the spine for pain.

I have been incredibly lucky with my colleagues at work. They said we can keep my erratic schedule within the team, with no need to talk with HR about time off unless we get to the point of family leave.