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I started the day at 6:30, and I was not feeling very well. Breakfast did not settle well, and I felt a bit off all day. Later I was even starting to toss-my-cookies. This feeling slowed me down all day.

This Monday was the day I had set on the plan to start getting Susie back home. I left a message on MyChart for Susie’s doc that I wanted to get Susie home. I also called and left more messages.

Eventually, I connected with the nurse for our primary doc. After some back and forth, I landed a phone call appointment for the doc on Tuesday morning. This took hours of elapsed time over the morning and afternoon.

I also contacted Providence House Services. They informed me that they must have a new referral from our primary doctor before they can help. However, they can help with equipment, such as purchasing a hospital bed for Susie through insurance.

Returning to the narrative, I managed a light breakfast, showered and dressed, and did not experience fatigued after those steps. The drive on Monday at about 9:40ish to Forest Grove was with very light traffic but crazy drivers. I managed to brake and dodge a bit with Air Volvo, all in slow motion, avoiding colliding with overly-polite but low-skilled Oregon drivers.

I reached Susie at Forest Grove Rehab and Care Center room 44A just after 10:15ish and passed the entrance rituals, including taking my temperature. Susie was still in bed and receiving treatment for thrush in her mouth five times a day. She was tired, as often happens after a busy day like Sunday when the staff has her out of bed and eating in the common area.

I tried to explain to Susie, who seems to understand words, but can only get out a few intelligible words at a time, that I was starting to work on getting her home. I could see her eyes light up when hearing about going home. Then, Susie began to nod off again.

I called Susie’s mother, Leta, and spent some time with Leta and Susie on FaceTime. Susie was not really sleeping, so I decided to do something different today. I brought the Apple laptop. I played music videos and music for Susie.

At first, we did old rock on a YouTube channel, but it was an odd collection with Guns and Roses unplugged (!?). So I found David Bowie and Mick Jagger doing their dance video, and Susie softly sang along. Working! Faith from George Michaels and Queen followed, and Susie was happy. A Led Zepplin (Kashmir is very long) and a few more items that Susie loved followed.

Covid testing for Susie and everyone happened between songs. I left a bit around noon. The facility is trying to avoid another shutdown from Covid-19!

I stopped by Popeye’s for some fried chicken. I was hoping that would settle me. It did not make me worse. I started a journal to record taking pills and how I am feeling. I have so much to do; I need more than the blog to remember things like “did I take my 10AM meds.”

After more hours of calls and messages as described above, I had a 9AM appointment by phone with Susie (and my) doctor on Tuesday. I was so cold I was shaking a bit. A sign that I was fatigued as the house was set to 70F. I was wearing my robe over my street clothes. Off to bed and a blanket and a book for the later afternoon. I was asleep when my boss at the shoe company, Brad Jones, asked me about my leave requests. I will look into that and talk to him on Tuesday about that. I was just too uncomfortable and sleeping to deal with it on Monday.

Mariah texted me later, and I had an early dinner with her. After waking and driving Air Volvo to the Golden Valley Brewery, I had a beer, a small one, and a pulled pork sandwich. It did not settle well. I was happy to see the GVB was still careful with masks and cleaning. The guests were also following the rules.

I discussed with Mariah that I would not be leaving the house for about three months for social items once the chemotherapy started. A reduced immune system and all my other challenges clearly make leaving the house a risk. I still plan to visit Susie, but that would be the best (with nursing care) if I could get her home.

I call into a church meeting, the only one I have made in a week. This is the group that works on Social Justice in Action for the church. It was nice to chat with the church folks.

Returning home, I nearly get to enjoy dinner in reverse. Back to bed to reading and sleeping. I use an anti-acid, and the problem settles down.

I am freezing and just slow down. Better.

I read The March Fallen (The Gereon Rath Mysteries Book 5). This is a set of crime novels translated to English and set in Germany of the 1930s, focusing on the police detective Gereon Rath. He is a slowly corrupting officer in the Prussian-controlled Berlin of the 1930s. In this story, the Reichstag burns down, and the Nazi take-over is destroying the Prussian love of fairness and order. The books are darker than most mysteries-crime that I love and not my first choice, but I have finished most series I enjoy and thus have returned to 1930s Berlin. This one is good if you like dark and disturbed, well-meaning detectives. 

I managed to finally sleep about midnight, which will make Tuesday start hard at 6ish.

The story working backward ends with me reading and falling asleep just after midnight. I sleep most of the night, getting up just once.

Note: I am having some issues with WordPress so I thought it best to just publish this before I break it again.

Before this, Richard and Shana brought over a homemade chicken pot pie with an ‘M’ on it, and Corwin and I finished it off. We had it for dinner and then for the second dinner. I find while healing that I get a lot more hungry than before. The food was terrific.

We had come from Cory’s house and my first Dungeons and Dragons game since this summer. I had missed a few games when stranded in New York City, and then we had a delay when Matt, our DM, was exposed to Covid. I was tired but not fatigued after the game, an improvement.

We are at the conclusion of a year’s campaign of premade material called DESCENT INTO AVERNUS. Matt has also bought the premium support product from Beadle and Grim and even added it. Thus we have had premade maps, cards, pictures of the primary good and bad guys, and figures to fit much of the storyline. We have reached the story’s ending, no spoilers here, and have just one session to go. After that, Matt has already planned the next 5e game, a magical carnival, and all the Beadle and Grim add-ons.

In the game on Sunday, my little gnome wizard did cast a spell to build a wall of force to split up the bad guys into two sets. This allowed us to crush each group instead of facing literally a pile of bad guys. Seldom does a wizard in 5e use every last spell in a single battle; I did. It was good that I showed up at this game session!

Before driving Corwin and me in Air Volvo to Cory’s, I was at the house for most of the afternoon. I tried to take it very slow and rest a bit. I baked the dish for early dinner from Richard and Shana. I let it cool down on the deck after the first dinner. Before that, I just read and took a nap. I was not fatigued, but I still could overdo it and start coughing again.

Lunch, still going backward, was with Mariah at the Black Dog in Forest Grove. I had a beer and a chicken sandwich without any dreaded fresh veggies. Mac and cheese being my colon-approved side item. Mariah and I chatted about housing; Mariah is headed to homeownership and her first home loan. I also outlined my new medical experiences starting 28Jan2022, chemotherapy.

Note: My expected side-effect does not include hair loss but could cause numbness in fingers and toes. Losing my fine hand movements would not be acceptable, so I will work with the docs and nurses to prevent that. I also plan to paint and build models during the long three months to ensure that my fine movements still work. Not sure it will be possible, but I will try to use my hands during the adventure of cancer treatment.

Before lunch, I managed to get out to the Forest Grove Rehab and Care Center and found Susie’s bed empty in room 44A. Susie was instead sitting up in the common area by the nurses’ station.

Sunday Susie was out of her bed, watching TV, and sitting by the sliding glass door enjoying the unusual sunny Oregon winter day. The frost was still melting on the roofs. She was also being treated for thrush in her mouth and was feeling a bit better.

I managed to connect with Susie’s mother for a FaceTime call. Leta was happy to see Susie up and getting treatment. Susie understands I will begin the process on Monday to bring her home. I have to get her primary doc to help and the insurance company to tell us what is what. It will take a while.

Before spending time with Susie, I drove Air Volvo to Forest Grove. I did not feel the exhaustion and pain in my incisions this time like the previous times. Since I also showered, dressed, emailed, and wrote the blog, this was quite an improvement. Often I could take a nap by the time I am ready. I still kept my stay with Susie to 90 minutes to ensure I would not suddenly get tired and not be able to drive.

The morning started with me sleeping in just a bit past 7ish. I had slept well.

I slept all night and was up at 7ish to start my day. I dreamed all night, and my sleep was strange, but I did rest. After that, I did the usual coffee, email, breakfast and wrote the blog.

Evan wanted to stop by, and then we would head out together in Air Volvo to see Susie. This delayed me until later in the morning. We got to the Forest Grove Rehab and Care Center about 10:30, and Susie was awake and dressed in her shared room, 44A.

Susie was more animated and tried to talk more than yesterday. She seemed to be better. She did understand me.

I did FaceTime with Susie’s mother and sister so they could both chat with Susie. Susie managed to get a few words out to Leta (her mother) and smiled when she saw Barb.

I arranged for the nurses to put on ice skating on NBC for Susie in the afternoon.

We, Evan and I, stayed for about an hour with Susie. Then, I started to get tired, so we left about noon. I drove Air Volvo to the house and then picked up a game, Concordia, and drove the very short distance to The 649.

Evan was fighting with the phone company about transferring his old number to a new phone. So I went into The 649 with the game and ordered some soup, Hungarian Mushroom, and chips while Evan talked more to the phone company. I had a tiny smoky-tasting beer too.

Evan continued with his adventures while I ate and waited. I was just resting; the 649 is not very busy in the afternoons and is strict on compliance to masking and distancing. There is even a note on the entrance that if you can’t follow the rules, then head to the bar across the street. They mean it!

Evan got a drink and ate most of the chips. The salsa was too fresh made for my 1950s styled no-fresh-anything diet. He had to use my phone and, after 90 mins still did not get his phone fixed, but did learn that the newly purchased SIM card was not usable and he needed a new one. Apparently, the phone people improperly activated it. I am not sure how that is possible by I stay away from telcom!

Evan was distracted as we played the board game favorite, Concordia, just the base game. I received from Kickstarter the new meeples painted with images on them for the colonists, and this was their first use. The new meeples looked great, and I found I could spot them now with ease. I was much more aware of where Evan placed his colonists. It was exciting for me to play with my new look Concordia.

A short description of the play for those who know the game: this was a simple two-person game on the Mediterranean map using the basic rules. As usually happens in a two-person game, I ended the game by building all my trading houses. Evan had acquired the top cards of Weaver and Vintner, while I had the lesser Mason and Farmer cards. I remember Wills’s admonishment to get the Mars cards and got out my colonists. The Farmer card and my focus on farming got me the game as I spread out building farming trade houses, and the food was part of what I needed to get more cards and more colonists. I have been crushed by a Farmer focused Kathleen in games at Richard’s house. So I remembered, and Evan was surprised when the game ended so fast. I won with over a fifty-point advantage as Evan was having trouble remembering all the game’s tricks to get efficient turns. Evan had not yet built up his wine and cloth cites and did not have his extra colonists out. He was just about to break out. I lost to Jason and Natash in New York City in my last game of Concordia when the game went on long enough for them to build out their wine and metal empires at the end of the game. Instead, I went with a hurried finish by using my Mason and Farmer card to supply resources for building more and more farm outposts.

Concordia is the game I played the most in 2021, and I recommend it, but there is a learning curve to know how to win. The rules are easy, but the interactions and scoring are complex. Therefore, I won’t repeat my game description from past blogs, but the link above will cover it.

I headed home and took a nap. Evan borrowed our landline to try to get his phone issues resolved while I slept.

I got going again in the evening but just sat in my chair with a heating blanket. Marianna from Nike offered me a fine dinner from The Thirsty Lion, and I decided that Fish and Chips must be on my diet. And it was delivered within 30 minutes and was still hot!

I watched the first X-Man movie with Evan, still trying to resolve his phone issue, and Corwin, who ordered extra Chinese for dinner. Unfortunately, I had the volume down and could not hear the movie well (my hearing is not what it once was), and I did not like the movie that much–it seemed dated to me (2001). Evan and Corwin were scandalized that I did not love the film. I may have to try it again. Evan and Corwin enjoyed their dinner while watching.

I went to bed after that and read. I was trying to keep everything slow.

I did not sleep most of the night with a cough and asthma issues. I got up early, wrote the blog, and got caught up on email. I took my pills at 10AM and then headed back to bed. I napped for a few hours. The coughing slowed when I had something to eat and get some rest.

I recognize the cough; I am tired and reacting to pollen and have a runny nose. My usual for overdoing it. This is not often caused for just living, but I did not rest much the day before. I will be more careful in the future!

I finally managed to get going in the early afternoon and dressed and showered.

The doc at the Forest Grove Rehab and Care Center called. Adam is the nurse practitioner that works with the doc, and he told me that Susie has a thrush infection in her mouth, and they will treat it. We also chatted about keeping Susie out of the ER and no needles for her. Adam believes my plan to get Susie into hospice and/or at-home care is an “excellent” plan. So I will start that plan on Monday. Again, this is running on the schedule I had worked out in December.

Changing subjects, the plan included three weeks of care for Susie and then paying for the room until we get her home. Thus I also wrote a check for over $4500 for two weeks for Susie to remain there. I will also be billed for therapy. Yes, it is expensive, but this is what it costs in the USA. I do not believe Americans should pay this, but that is our present way of caring for people. Pay over 10,000 a month for primary care.

I manage to get to the nursing home about 2ish, and Susie is sleepy and in bed. She was dressed and had some food and water before I got there. I water the plants and sit with Susie for about an hour. The fatigue returns. I do manage to get Susie to chat with her mother on FaceTime.

I tried to get Susie to smile wide.

The nurses were happy to see me; they were worried as I was late and rehashed the changes in Susie’s care. We are all happy to see each other, and they know about my surgery and that we are going on private pay, but care is not to change.

The staff at home love Susie and are happy to have someone in their care where the family and friends visit. It makes a difference for them too. They worry about me and my recovery. It is nice to see so many caring people.

The facility is challenged right now. Seven of the staff are down with Covid-19 and are out for at least five days (according to CDC guidelines). I am seeing right-wing memes about the mandating of vaccines as the cause of the staffing issues, but no, it is the spread of the variant caused mainly by the unvaccinated (20% in our county) that are causing the problem. I have evidence in front of my eyes.

I wish Susie goodbye, no kiss as I am coughing (I clean my hands often), and she falls asleep again. She can only get out a few clear words now. The thrush infection is one of the speech issues.

I manage to get home without issue. I had clam chowder from a can for lunch before I headed out to see Susie. I rest some more.

I watch videos on my Apple. I am newly fascinated by one channel that is a first-time build of a wooden ship from a very skilled plastic model builder, AlexModels. Again, another Patreon-supported person. I watched all six videos released in Nov-Dec 2021. I have four unfinished wood models and have already learned some important details.

I ask a question as I see he uses super glue differently than I have done. He answers in a few hours! I also order his coffee cup to support his work. I ordered the same item on Amazon and also ordered from MicroMark an OcCre workbench for this tiny scale work. He even has a video on putting it together.

I was going to head to the Smiths and play a board game, but it was unwise to risk exposure with the cough and Kat flying home to New York City. Not to mention David and Michelle did not need a cough either. So instead, David stops by, and we exchange a few late Christmas gifts.

I get a book on the incredible miniature work done for the holidays at the gardens in NYC. I send Kat a glass ornament of the Eiffel Tower. Kat’s animation project at college was set in Paris with a singing and dancing suitcase, which seemed perfect. Kay is a 3D animation artist.

We watch Thor 2 together using the groups on Disney+ after some fiddling to get it to work. It is late when we all say good night.

I manage to sleep almost immediately, but 7AM comes too soon.

I managed to get a bit more sleep but still was busy in the early morning, reading email, news, and having breakfast. I also wrote the blog and then rushed on my way.

I had a morning doc appointment at Knight Cancer Center in Portland on Legacy campus across from Legacy Good Samaritan Hospital off of 22nd. The doctor explained the numbers to me and that it would be his plan for six months of chemotherapy. I was hoping for an easier answer, but the numbers are clear, and the chemo must be done soon. Thus, I will begin my cycles at the end of January.

The process will be on infusion and an oral drug–plus drugs to help with the side effects. Oxaliplatin is a few generations from one of Susie’s experimental drugs, but Susie was part of the trial to bring this metal salt type of drug into use. Thank you Susie for risking the original drug! Capecitabine is an oral drug and the other drug I will be taking. All of this in four cycles over three months.

The only concerning side-effect, for me, is loss of feeling in the hands and feet. I would like to keep my skills of figure painting and miniature work intact and will work with the doc and nurses to identify issues and make adjustments.

Of course, all of this was difficult to process, still is, but I left Portland and made the 45 minutes to an hour trip to Forest Grove from Portland. Susie was awake, and a bit damp from spilling something on herself. Nevertheless, she was happy to see me. I managed to call Susie’s sister Barb and Leta for Susie. A bit of FaceTime cheered Susie, but I was fatigued and had new pain from my incisions and had to make it a short visit.

I also stopped by the biz office; Susie comes off of insurance on this Friday and I arranged to pay for two weeks for Susie to be at the Forest Grove Rehab and Care Center room 44A; the cost being over $4700. While it is expensive, I was happy that insurance covered until this Friday–three weeks! So, I will bring a check for them on Friday. I had set aside money for this kind of stuff in New York City in the fall when Nike stock hit $172, again. I knew we would have some large bills.

Next week, as I explained a few days ago, I will start the process with our primary doctor for home care or hospice care for Susie. I am still tired, so I plan to start that after the weekend. I want to bring Susie home.

While things sound a bit crazy, this is running to the plan I imagined without any nasty surprises. The extension of insurance coverage until Friday is a nicety not in the plan. The short disability at 70% pay will require careful attention, but the 125 medical reimbursement cost coverage started over in 2022, so I have the max to pay new medical bills. I think I can make all this work.

I left Susie with a kiss and headed back to Beaverton. I then drove to the German place in Beaverton, Bargarten. There, feeling tired and unhappy, I read my chemo manual supplied to me by the Knight Cancer Center. I had a small German beer and Fondue. I overdid it now, and when I got home, the pain in my incisions was headed out of control. I managed to drive home safely and even got the mail. A toast to all my Nike and SAP friends and German friends!

I went to bed for a while and tried to relax. Then, a cough started, and the pain was shocking in one place. Yup, really overdid it.

I recieved a Kickstarter today to update some board games. Meeple Source sent me my cool looking painted wooden meeples to replace the plain pieces for Concordia’s colonists and the archeologists in The Lost Ruins of Arnak. I have a few extras I may give away and might update another game. The new parts do not change the games, but they do improve the immersive experience.

I reheated the tortilla soup from Mrs. Jackson and tried to move less. I watched some BBC-based news on PBS and then went to bed again. Next, I read Scottish Church history–I have a reprint of an old history of the saints and church in Scotland. It is hard going as it is racist and an anti-catholic work, but it contains original sources and some context for the sources. I have this copy as this antiquated work is often quoted in newer sources–I like to see the original sometimes.

I could not sleep and was up most of the night. The coughing and wheezing kept me up. I will try to go slow on Friday and the weekend.