The morning started with me startled as I had woken at 6 and then stayed in bed until the alarm woke me again. I was staggering as I was up but very tired. I would suffer all day with exhaustion.

Glenda, Susan’s Aunt who is here to help me, was up and going at 6AM, she being a morning person. I then spent 90 minutes writing the two-day blog. I had been too busy on Easter with making pancakes and then seeing Susie to write the blog on Sunday. I then dressed and helped around the house. Glenda cleaned the frig and then folded laundry, and she also organized the living room and did some wash.

After having a lunch of cold items leftover from before and a ham and cheese sandwich for me, we headed to Susie. I drove Air Volvo without events to the Forest Grove Rehab and Care Center at 3900 Highway, Room 44A. Glenda and I passed the screening and soon found Susie at the table by the nursing station; having finished lunch, I left them to chat with the admin for the facility.

I talked to Dan, the head of the facility, and he was unhappy to learn that my request to get Susie more services was stalled and that I had not been informed of any progress or lack of progress by the facility. He then texted the person working from home, asked them to prioritize my request, and gave them my phone number. Sadly, and this does happen, I received no further update on Monday as possible my phone number was wrong, or there is progress, and they will fill me in Tuesday.

Aside: A week has gone by since my request, and I am a bit frustrated as I will have to pay for more coverage there, but with Covid-19 and the difficulty of getting medical people and the burn-out that is happening, I will not push too hard. I just want what is suitable for Susie and for the facility.

I found Susie and Glenda now in 44A as Susie was lying down now. She and Glenda were chatting and catching up. I got out my iPhone and contacted Susie’s mother, Leta, by FaceTime. Susie and Leta had a chat while I briefed Glenda on the lack of progress at Forest Grove.

Susie was yawning and ready for a nap, so we left her tucked in.

We arrived at the Volvo Cave, and I started to see stars when I stood up, so I rested while Glenda continued to clean and help. Then, after an hour, I got back up and called Bristol Hospice, our former hospice service provider, and the head of social service there, Sarah, sent us an email of possible adult foster care places that she could recommend. We are also considering nursing homes, with Maryville placed at the top of the list.

Glenda continued to organize and clean with some help from Corwin when he got off work. I rested a bit more.

Glenda and I headed out to the German place in Beaverton for dinner. I had a beer, and Glenda tried a glass of white while from Chateau Ste. Michelle in Washinton state. She thought it good, a sauvignon blanc. We shared a fondue with bread and sausage. Glenda had salad, and I tried soup and salad (lentil soup). We both had apple strudel for dessert, which is lovely there.

Glenda was tired, and I was fatigued all day, so that was the close of our day. I read and then went to bed. Glenda was in bed soon.

The azaleas are flowering now. I got all of them with the house back in 1996, making them more than twenty-five years old (I heard they were dug up from the previous mother’s home, transplanted here, and thus could be very old). A few have failed, but most are still going.

 

Sorry, but I was too busy on Easter to write. So this will be a two-day story.

16Apl Michael’s Birthday

Saturday, my 58th birthday, started with many electronic birthday notices. In addition, Facebook was filled with birthday greetings. I was up about 8:30ish as it was my birthday, and I was not ready to get up early. So I made coffee and had a bagel with salmon for breakfast, my birthday gift from New York City, and the Smiths and Jason.

I was trying to rush a bit, but the blog was two hours of work, and I soon ran my usual hours. Lunch was a ham and cheese, and then off to buy groceries.

I picked up the basics at Safeway and some bright flowers for Susie. Most folks, it being Oregon, are politely masked. After shopping, I had to wait for a checker as my cart was close to full, and I would not check myself for that much. Safeway no longer opens extra checkers when there is a line. Instead, they are trying to drive you to the do-it-yourself checking.

I put away the goods and was now fatigued. The anemia makes every task harder. I left to see Susie.

Air Volvo had no issues reaching the Forest Grove Rehab and Care Center at 3900 Pacific Highway, Room 44A. Susie was in a wheelchair and had not liked lunch very much. But she did love the flowers and was excited to see me.

We called Susie’s mother, Leta, on FaceTime as usual. I took Susie for a spin around the facility, and we even sat outside in the sun for a moment. The place was covered in Easter colors and eggs.

I headed back home directly and soon was resting for a bit. Glenda Hill, Susan’s Aunt who resided in North Carolina, flew out to help. Her flight arrived at PDX at 7PM, slightly delayed.

As it was my birthday and Leta had sent me some money, I went to the gaming store–I had not been back in months due to my chemotherapy. I purchased the game I wished was in my collection, Azul, some type of paints from Army Painter, and some speckled eggs for the boardgame Wingspan.

Dondrea drops off some cupcakes and flowers for me. The cupcakes are stuffed with lemon cream. Thanks!

I rested a bit until 6ish and then headed out to PDX. Air Volvo seems almost to drive itself there, I used to travel a lot, and the trip to PDX was often. As the Airport is still locked down for Covid-19, there is no reason to be early. I get there just about 7, and Glenda’s plane touches down about the same time I had down to find her. I park the car on the top of the parking garage. The view is magnificent, and then I use the tunnel to connect to baggage claim, and I wait in a chair.

We connect without issue; I sit next to the Bigfoot chainsaw art of a bookworm furry creature with glasses–very Portland. We find Glenda’s bags without a problem and head down and then up.

We take Air Volvo back to Beaverton. I would love to stop by a cool place in Portland, but I have Glenda’s luggage in Air Volvo, and I do not want the stuff stolen. I still regret the loss of my Nike laptop and other items the last time someone in Portland smashed my window and raided the car.

We decided on pizza and had a pizza and salad late dinner at the Old Chicago Pizza place. We get a chicken with white garlic sauce with spinach. I was expecting the spinach to be fresh and baked into the cheese, but they dropped a large salad’s worth of greens on the pizza after baking. It was pretty good, but we took a lot home.

Glenda and I both then returned to the Volvo Cave. We managed to get to bed before 11ish, and both slept.

Easter 2022

Glenda and I were up in the early morning and left the house dressed and ready at 7:45ish. Today is Easter, and I am making breakfast for folks at the church. Zophia, a younger person, is coming to help me. Glenda is also willing to do a bit of work. So soon, we have pancakes going. Others have the sausage, all turkey this time, and scrambled eggs with cheese, peppers, and onions. We manage to use up all the food by 10:20, and we are done. I am exhausted, and my feet hurt in new chemotherapy ways, like walking on blisters. But, as usual, it is just another false feeling.

Zophia is excited, and soon we have pancakes with ears and various other forms. She is happy to learn how to grill pancakes.

Church follows, and when I stand for a hymn, I fall back into the pew as I am too dizzy to stand. So I go much slower after that.

We leave and head back to the Volvo Cave to change. After lunch then, we are off to see Susie for Easter.  Before we go, Charlotte Jackson brings over some food, and we partake of some of that and the usual ham and cheese sandwich. Thanks, Charlotte!

We have a kite for Susie with a butterfly design for Easter. We will hang it on the bathroom door. It brightens up the room, as do the flowers from yesterday.

Susie is at the party. It is Easter, and the place is chaos, with kids and family everywhere. There is cake and punch, and we get some; little tiny bites for Susie and a careful sip of the punch. We call Leta, Susie’s mother, and they have a chat.

We take Susie for a spin in the facility and soon head out as Susie’s head is starting to droop, and she wants to rest.

We head home and are there for a bit; I get some rest as I am dizzy a few more times. Glenda and head to the 5:20 showing of Batman, the new movie. I did not know it was three hours long, and we both agreed it could be edited down to two hours, but it was enjoyable, and we both liked it.

We have a late dinner of leftovers, and we soon head to bed. I read for a while and sleep finally after 11ish. I wake up a lot and have a headache at 3ish; sleep comes and goes.

The morning came, and I struggled still to get going. Sleep came before 1AM, an improvement, but still, it is hard. But, it is time to return to my old habits of being up early is usual for me. I manage 8:30.

I was thinking about breakfast when a box from New York City arrived. The box is from the deli and food emporium Zabar’s. So I contact the Smiths plus Jason and thanked them for their kind and the perfect gift for my birthday, bagels from NYC!

I was busy writing a longish blog, reading emails, and enjoying the bagels for most of Friday morning. I had a bagel with cream cheese for breakfast and then went all out with the lox and pickle for lunch. Thanks again, Smiths plus Jason. Laundry was also done as I needed some clothing. I usually did a load of laundry just before starting a chemotherapy cycle, as that would give me more than a week’s wearables. But, this time, there is no next cycle, yeah!

Please note that I plan to switch to finishing the blog at night when I feel a bit better. It will then be a genuinely daily blog with it ending at night. For the moment, I will stay with blogging every day, but usually, my days get pretty typical once I return to work and be pretty dull.

Nausea! It is +2 days from chemo, and I knew this is usually an unpleasant day, and it was. Nausea makes me one step from throwing up all day and even into the night. My body is reacting to the loss of the poison and starting back on making blood cells and so on. I am dizzy from anemia if I move too fast or lean over, I am nauseated from the end of chemo, I have trouble with my legs as my knees are suddenly not working right, and I am enjoying full-on allergies, including now itchy skin. I am grumpy, but I know by +4, this will all be gone, except for the allergies.

I managed to dress and rest for a bit. I have to stop a few times in the morning and just relax. I am running late again. I board Air Volvo and fly to Forest Grove Rehab and Care Center at 2ish. I arrive there at 3900 Pacific Highway, Room 44A, without experiencing more than the usual traffic and high jinks (i.e., someone braking for green lights because it might change, cars stopping to turn instead of learning to turn at higher speeds, and using the side of the road to turn, not breaking until the last moment but letting the car naturally slow down and thereby not alerting the drivers behind you that you are slowing, and so on). I pass the anti-Covid-19 checks and soon find Susie resting in her bed.

She is delighted to see me. I am now enjoying almost too much nausea, but I go with my fake-it-to-you-make smile and ignore the need to puke–it works. Susie is sad to hear that I am ill but happy to see me. Susie is having a good day, which is nice as she was in terrible pain from constipation–it has passed. We connected with her mother, Leta, on FaceTime, and we had a short chat. Susie fell asleep after a busy day of breakfast and lunch and sat in a wheelchair all morning and part of the afternoon.

There was no progress on getting Susie rehab services, and I will work with Glenda; she arrives on Saturday to help decide how to go forward. It would almost be simpler to move Susie to a new facility than to get the current one to redo the process. But we all have to remember that medical stuff is always like this, frustrating.

I leave Susie and head back in Air Volvo. I pickup Corwin on the way to Panera. They have returned the Strawberry Poppy Seed with Chicken Salad to the menu! This lettuce salad is excellent and seems a good fit for my nausea. Corwin ordered a, we later learned, average to poor quality baked chicken breast sandwich, which took 45 minutes to arrive. My soup was cold by then, but I was already running late and just enjoyed it–Mexican Corn Chowder, also new to the menu.

I was now running too late to do the grocery shopping and still nauseated. I rush home, change clothing, and head to the Good Friday service. I am only a few minutes late for the First United Methodist church service in the chapel.

Aside: I did get some polite remarks from Rev. Wolff that he has explained Maundy to me before and that a bit of education is good for everyone. But, daring another instructional response, I will comment that I dislike Good Friday services; they are too dark for me.

Sitting next to a baby grand piano in the small space that is the chapel was an experience of hearing every played note in detail. I could not hear the singing as I was in point-blank of Harold’s playing. Being tired, blasted by sound, and nauseated, I decided to not open my mouth singing and dare a more physical response to the death of Lord Jesus. I hummed along or just read the music and studied the notes blasting into my head. I can read music.

The service contained an opportunity to literally nail your troubles to a wooden cross. Soon the cross was covered in small pieces of paper held there by a nail. Again, I handed my troubles to Zophia as I was worried that nausea or dizziness would make my nailing of my problems more dramatic than expected by my fellow Methodists.

I put the electric cooking grills in my car before heading out; I have two. Zophia and I moved them to the kitchen from Air Volvo so that they would be ready to use on Sunday morning. I also covered the mysteries of pancake making with Zophia, who is looking forward to experiencing proper pancake making for Easter. All secrets will be revealed then, including what is the proper size of the pancake to avoid having pieces of pancake everywhere when flipping the hot cake.

I decided not to return home but headed to Sherri’s for pie. When I got there, the one off of 185th and Farmington in Aloha, I had a BLT as I thought maybe more food would help. It did, and I enjoyed some pie after my sandwich, my original reason for heading there.

Feeling better with nausea mainly in the background, I reached the house and made the bed, having washed the sheets in the morning, and then climbed in and tried to sleep. I often hear Susie’s voice as I fall asleep at night, and I wake up hoping she is back. Finally, I managed to sleep after midnight.

Aside: I got a text for Happy Birthday from the Philippines. Janet, a rock band singer I met in India years ago on a biz trip, still texting each other. She was one of two singers in a band that rocked the hotel bar five nights a week; I was in India for five weeks. I always ate at the bar, called the i-Louge strangely, at the hotel, The Asiana, and would bring “my little friend,” my Apple laptop (with apologies to Scarface), and do videos conferences with my Father or Nike IT.

 

 

The day started with me waking to a call from Evan. He wanted to see Susie hang out and play a game. I was game if we could delay this until noon. It was 9ish when he called. So I got up and started on the morning tasks.

The chemotherapy ended at 10PM on Wednesday, but the effects will take days to wear off, and it will likely take weeks for the anemia to reverse, and my allergies are not helping as I cough and sneeze. I am also wheezing a bit which means I am not getting enough sleep and rest. So I am pretty much still weakened and struggling, but I am excited to leave behind chemotherapy and cancer.

My hair did not fall out entirely but is much thinner, and my hat seems to have become larger. I need a haircut as it is strangely long in some places and thin in others. l have to see when Zeriada has an opening sometime soon.

It is Maundy Thursday, but my church is still struggling to run services, so only a Good Friday and Easter service are planned at First United Methodist, Beaverton. I am helping to cook breakfast for anyone who shows up early, about 9ish, on Easter. Sophia will help me; she is a younger person but is excited to learn how to make pancakes. I remember teaching Pastor Wolff’s son Author years ago, and it is good to share this again; thus, Sophia will be a Methodist Man on Sunday! I have acquired two electric grills over the years and will be there at the church at about 7:45.

Aside (rant): Maundy is a word derived from Latin. Many churches officially replaced the Maundy Thursday with “Holy Thursday, ” but most Anglican-derived Christian denominations keep the older name like the Methodists. So yes, Protestant churches retain the Latin that even the Catholic churches no longer use! I find it personally a mistake to retain these obfuscating words as it confuses and separates people. This Thursday should really be called Jesus’s Story as that Thursday is the beginning of the story that ends with Jesus’s death on Good Friday (another confusing name).

Returning to the narrative, I wrote the blog, had some more Irish Black Ginger Cake, and finished my email and other morning tasks. I was able to get that done and hit the shower at about 11:30. Being dressed within minutes of noon.

Evan was a few minutes late, and we finally got aboard Air Volvo at 12:30ish. I was drained now. We reached Forest Grove Rehab and Care Center at 3900 Pacific Highway, Room 44A, at about 1ish. Susie was just starting lunch when we arrived. We promised to return soon after lunch, and I left her in the hands of the nursing aids who fed Susie.

Susie cannot balance a spoon and get the food where it needs to be. She is also a choking risk and has pureed food as the last strokes partially paralyzed her left side and affected her ability to consume food. However, there is hope for an improvement as Susie can speak now with some clarity. In addition, she can now hold a cup and drink from it, all vast improvements.

Evan and I take Air Volvo to my usual haunt, the Grand Lodge’s Iron Grill. There I have the hummus plate and Evan his usual pizza. I am still a bit uneasy from the chemo, the anemia, allergies, and exhaustion, but lunch is good, but the service is slow.

Now running later than I planned, we stop by Wallmarts to get a computer mouse. Susie’s roommate, Terry, needs one, and I forgot to bring one. We find a cheap but universal mouse for Terry, and I pick up a few gifts for Easter for Susie and Corwin, kites, as that seems more of an Easter theme than the sharks, Barbie dolls, and nerf guns now available to celebrate Jesus’s resurrection. So for Easter, I can hang a kite in Susie’s room, a butterfly.

Next, we get yogurt for everyone and return very late to the facility. Terry is happy with the mouse and the extra batteries I got her (cheap at Walmarts), and the yogurt is distributed. Susie is unwell, we discover, and this upturns our celebration.

Susie is suffering from abdominal pain again, and this time it is much worse than a few days ago. Susie is saying it is 7-10/10 pain. The nurse checks in, and Susie refuses a small morphine dose but instead goes with Tylenol. We are now focused on Susie, and I hold her hand and just be with her as we wait to see if the pain will fade. The nurses believe this to be a repeat of constipation which can be terribly painful. Susie is getting laxatives already and is kept seated in the mornings to help. I had read in New York City (they had a study taped on a wall on Mount Sinai West when we were stuck there for five weeks until Susie was well enough to travel) that using gravity was the best fix for constipation.

After thirty minutes, Susie was improving, but the discomfort was still terrible. Susie agreed to a tiny bit of morphine but refused at the last minute and then changed her mind again when she learned it was a small amount and was oral, not a shot. The pain faded as the issues, let’s say, passed.

Evan and I stayed until 4:30ish to ensure that Susie was comfortable and feeling safe again. Susie was tired out from the pain and, after being changed to different clothing, was comfortable and said it would be OK for us to go. I got a kiss and headed out with Evan.

We took Air Volvo to The 649 Taproom. Unfortunately, on our way, we kept being caught in the same hail storm. The Oregonian driver would go slower and slower, and the storm caught us. We got to be hit by the start of the storm at least four times, and Evan laughed as I yelled at the other cars to go faster so we could outrun it! But, alas, we had a turn that took us fully into the storm, and we were pelted with snow-sized pellets for ten minutes. We finally reached The 649 looking like we had faced a snowstorm.

The 649 was a bit busier than 3ish when we usually get there, but we got a larger table and pulled out the board game Architect of the West Kingdom. Evan wanted to win this time and played very well. Unfortunately, I misplayed a few times and had just enough debt to give Evan the game by two points. I could have avoided the debt–next time! Evan managed to use some of the game’s new features this time to his advantage, scoring an impressive 50 points.

We headed across the street, giving up our table, which was in high demand as The 649 was nearly standing room only when we left for dinner. The Mexican place changed our order to-go when I got a text from Dondrea reminding me it was Theology Pub night and already past 7PM. Today I running late for everything and had not noticed that it was evening.

We headed home in Air Volvo, and Evan ate his meal at the house and then headed out. I joined the Zoom meeting and found the discussions off-topic from Sacrifice. It is not unusual for the church meeting to wander a bit. My dinner of shrimp grilled was not much better than I could do on my grill. Not recommended. I ate it while listening.

Theology Pub is a meeting that, before Covid-19, used to meet at a bar and drink and discuss theological issues. Now we supply our own beverages and talk on Zoom on the second Thursday of the month. This month’s topic was Sacrifice. I was cold and tired, so it was hard to be present at the meeting.

After the meeting closed, I read and tried to sleep. I was freezing again and tried to relax. I got up and found on eBay some unusual stamps from Ukraine for sale and ordered them. Postage and shipping were very high; the world still suffers from high logistics costs. Which has some irony when I am buying stamps. According to the eBay explanation, the profits from my purchase would help Ukraine. I am sure that these stamps are not being sold secretly by Russia and feature the recently sunk Russian naval cruiser.

I finally slept after 1AM. I planned to start early on Friday but managed only to begin at 7:30AM.

Going backward, I made it to bed at about 2AM. I was nauseated, so I stayed up. I had taken my last chemotherapy meds a bit early, hoping I could sleep better, but the nausea was worse. So I found a demo of how to play the new solo board game: Nemo’s War. Next week, I have the game coming with all the expansions from a Kickstarter that I supported. It is late, as shipping costs and logistics have become nearly impossible in a Covid-19 world.

I am looking forward to trying out Nemo’s War. It is the 2nd edition, and I find games that can pull off a 2nd edition and a Kickstarter are good games. The changes are improvements, and the popularity that made a Kickstarter possible strongly suggests an excellent game.

Before this, I baked another item from the Celtic cookbook, Irish Soda Bread. Now, this is a heavy rustic, tasting bread. It is just flour, baking powder, and buttermilk. I mix in buttermilk powder and add water instead of fresh, yuk, buttermilk. My bread did not rise much and is heavy, but it is still OK.

Moving back in the day, I made dinner. I got out the frozen salmon I purchased at Wholefoods and tater tots and heated up the oven. The salmon is already cooked. I defrosted it for about 2 minutes in the microwave, adding some seasoning and setting it aside. I baked the tater tots with blackening seasoning at 450 and put in the salmon in the last 8 minutes. It all turned out fine.

I ate dinner while watching the third episode of Moon Knight on Disney+. I was surprised by how far this left behind the previous episodes with now having Gods and magic everywhere. The grittiness was gone, and instead, it could have been animated as it seemed just pages from a comic book. I was also tired and will watch it again. There was no change in recommendation, but the show returned to its comic book roots.

Moving to the early evening and afternoon, I sat on the floor, sorted all the papers, and found most of my receipts for charitable giving. I have terrible anemia from the chemotherapy (it works) and cannot get my head below my chest. I missed one, but that was not an issue as I gave monthly. I also had no records for stuff I gave to Goodwill–I will be more careful in 2022. I managed to find enough to finish my taxes. I also had Corwin throw out the extra papers when he got home.

On taxes, the giving only reduces my state taxes as Mr. Trump fixed it so I would never get any tax credit for all the taxes, medical expenses, and interest I pay. Mr. Biden now will receive a windfall from me, but Mr. Trump’s tax cuts made this so expensive. But, he knew where the money was and did exactly what was promised–he raised taxes on people in high tax states with mortgages. So, while I begrudge the payment, I appreciate the accuracy of his policies.

Oregon has a unique tax process; I am sure you are not a surprised reader. Oregon makes a two-year budget for expenses and income. If the taxes return too much money, the money is returned to the people, called The Kicker. The Kicker this year is outstanding. All of my underpayment of Oregon taxes was covered by my Kicker payment. After that, I had three dollars left and donated that to the Oregon Aquarium. Again, Oregon provides many convenient ways to give back the money to support schools and organizations like the really cool Oregon Aquarium on the coast. I usually have a larger refund and give a few hundred bucks away. Often the Kicker pays for my federal tax bill, but not this year.

Besides Mr. Trump’s successful harvesting plan by raising taxes in mostly democratic states (again, I don’t like it but it was well targeted), the high tax bill is caused by the sale of stock. This had to be done to cover medical expenses and my unexpected expenses in New York City when we were stranded there for five weeks. I also made a profit of over $5000 in my investments (long-term gains, so they were at the lower tax rate, at least). I sold them to pay off the Volvo, before all the new medical adventures. So it is time to pay the piper.

Moving to the late afternoon, I left Susie at about 3:30ish with a kiss. She was tired when I got there; she had been busy in the morning and fell asleep again. I worked earlier with the head nurse Pre to get the United Health Care (UHC) and the Forest Grove Rehab and Care Center at 3900 Pacific Highway, Room 44A, to work together. Pre and I actually did a call to UHC and tried to create a new case for Susie, but Pre is not the admin and did not know all the required information. I again wrote a note to Julie to get this started; she was not in on Wednesday.

Without issue, I got to the facility and learned that nothing had gone forward with getting Susie some rehab services. The doctor had done the referral. I called UHC and discovered the facility needed to open a new case for Susie and that they could accelerate it. Susie was happy to see me, and we called Leta, Susie’s mom, on FaceTime.

Before getting to Forest Grove, I spent the morning going slow. The 14 days of chemotherapy were crushing me, and the anemia was also dragging at me. Nausea is familiar, and so are the stars I see if I stand too soon or lean over. So I am careful and move slower than I like to ensure no sudden dizziness or loss of conciseness. It would ruin my day to wake up in ER!

I start the morning a bit happier and ready for the day. It is the last day of chemotherapy. I feel terrible and rejoice in it. This feeling will fade after today. Cancer will be in the rear window as I fly Air Volvo into the future.