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I spent the afternoon and evening being dizzy and stumbling tired on Sunday. This crushed my plans to organize the bedroom and my table. I was planning to spend the afternoon and evening doing housework, but apparently, I was overdoing it and needed to stop. I was disappointed but took it slow.

The morning started at 7ish, with me sleeping a bit longer. I had no hint that I was going to slow down on Sunday. I did the normal things and wrote the blog for the day before. I am now trying to move into the new habits and use the skin cream on my hands and feet. Immediate learning was not to step on the tile floor until you have stepped on a towel first. Sticky prints that are slippery are not a good start in the morning. I also think I should switch to the electric razor that I bought and have not used since the blood thinner stopped when I left the hospital. I thought I would be giving myself shots, but the doc did not prescribe the shots for home. I will be experiencing low platelets from chemotherapy, so I think I will switch to an electric razor.

The trip on Sunday to Forest Grove Rehab and Care Center Room 44A was without incident. I was surprised to see Susie in a wheelchair wheeled around by a CNA. They let me take over. I pushed Susie around the building describing the areas. Susie did not look like she was paying attention but was dressed and even in her fav tiger slippers (now with the bottoms covered in duck tape!).

I took Susie to the shared area, and we watched a soccer game (in Spanish and well in Spain). After that, we just sat together for quite a while.

I was already feeling hungry and lightheaded, so I told Susie I was leaving. She asked me not to leave her. I told her I would be back on Monday, and she finally agreed that it would be OK.

Zoraida surprises me as she is just getting there as I am leaving. She comes and stays with Susie, and Susie asks her to stay. This is heartbreaking for Zoraida, and she remains until Susie falls asleep.

I will be back to Susie the following day.

I return home directly and warm up the spaghetti from Dondrea for lunch. I am dizzy and not feeling well. I think it is hunger. The food helps, but it will be a day of reading and watching, no housework today.

I watched Cruella, the Disney film, and read. I use the electric blanket that Aunt Kathy and Uncle Martin sent to me. I am not really able to do much more than just sit.

I do make a German Chocolate Cake from a box. I also open a can of Oregon Cherries, drain them, and soak the cherries in cooking bourbon (cheap, low-price, but surprisingly good flavored). I then do the usual with a boxed mix (this takes almost no effort) and add in most of the cherries, holding back the juice (mostly booze). I bake that according to the box. I always line by cakes with parchment sprayed with a non-stick product.

Annika and her family sent chicken soup, and I heat that up. That is dinner and is terrific. The cake, lots of it, follow as dessert. Of course, I take a can of pecan and coconut frosting, heat it in a microwave, mix it in the booze and remaining cherries and frost the cake with the rather liquid bourbon-cherry frosting. I then used a fork and put holes in the top to let the liquid into the cake and spread the frosting into the holes.

I go to bed early and read and wake a few times.

I have stopped picking out music for these blogs, but here is a song for today: Shape of My Heart.

And there is what I believe to be the most powerful statement of MLK regarding why now it is time to stop waiting and start to disrupt and change the world: MLK Letter.

 

Saturday started with me starting late after 8ish. I was tired in the morning and got going very slow. The blog was also a bit long, making it a rushed morning.

I read the usual email, New York Times new summary, and coffee. Evan called in the morning, and we agreed to him being here about 10:30ish and then heading to see Susie.

I managed all the usual morning stuff and did not have fatigue.

Evan showed, and we took Air Volvo on the foggy Saturday to Forest Grove.

We passed the rituals with Evan, worried as he just had his vaccination for his third dose and is feeling a bit rough, but no fever.

Susie was still in her PJs and was asleep, and it took a moment for her to wake. Evan got a big smile from Susie. Susie was still sleepy and fell back to sleep a few times. We did a short FaceTime for Leta with Susie, and she was able to get a few words out.

I learned from the nurse Sarah that Susie is now officially in hospice care managed by Bristol Hospice. There are some medication changes, primarily for comfort for distress. In addition, a coughing med is being put forward as part of hospice as Susie is coughing more.

Evan and I then headed out to the Grand Lodge for lunch; Evan had never been there before. In this new Covid-19 and impossible to hire people world that is 2022, the service was friendly but slow. I had my first pizza, Compass (in memory of the Mason’s who built the building around the start of the previous century), since my surgery. Evan had the tuna appetizer and an Irish Coffee (still trying to feel better from his vaccine). Both were good.

While there, I got a call from Bristol Hospice; a hospice nurse had physically visited Susie and was reporting to me. A new experience. She had helped get Susie cleaned up (Susie was agitated, and I had asked the nurses to help her as we left). The hospice nurse told me that she saw Susie, detected the issue, and helped resolve it. She found Susie could answer questions and that she was still lucid. The hospice nurse also pointed out that Susie is tiny and can move, so working with her was easy.

Evan and I return to Susie, and we wake her again. We chat a bit and then do some music videos with her. Evan learns YMCA arm movements, and we do those to the song. Susie just moves her hands a bit but enjoys the action.

I have trouble leaving, but it is time to let Susie sleep. She started to fall asleep during the music.

Note: Susie’s roommate, Pat, gets out of bed every ten minutes and is a hazard. The nurses rush in multiple times to help Pat, who clearly does not know she was up a few minutes ago.

Evan and I return to the Volvo Cave without issue and pick up a few games. I bravely take 18 Chesapeake board game with me. This is a train 18xx game, an entry-level one. I am trying to learn the 18xx games, and we spend an unproductive afternoon trying to understand the board game.

We head to The 649, and the bartender asks me how Susie is doing. They remember Susie as they do not get too many customers using a walker during a pandemic. The 649 has stringent adherence to masking, requiring only N95 masks, no cloth, or simple paper masks.

We went right to drinks (having had lunch); Evan had another stellar mixed cocktail while I had a small beer.

Turning to gaming, I could not make the Operational Turn of the board game work. I was confused by the directions in the manual. However, we had managed to get the stock market running, and IPO’d (“floating” in the game’s terms) a few companies. Yes, this game simulates a stock market and includes takeovers and company funding. The game ends when someone goes broke, or the bank is busted (it only has $8000 total–a lot back in the early-mid 1800s).

You win the game with the most money adding in the value of stock valuation from the market (not par value but market price).

After the second turn, we abandoned the game as I knew I was missing some vital steps. Unfortunately, learning board games, especially a new type (18xx), often take a few failed attempts. I later watched a short video and discovered my mistake as I ran the Operational turn in 18 Chesapeake multiple times until the player passed convoluting the Stock Market and Operational processes. Actually, the correct process is to run just once for each company. It is not by a turn player but by a floated company. The order of play is the highest stock price to lowest. Next time, I think I have it now. I also need to bring poker chips as the paper money does not work.

Note: You may break bills using spare currency, but no new money enters the game. The players have to be careful to break bills and pay the bank and themselves without entering any new cash into the pool of money. Many games need a very close adherence to the process. The 18xx, being railroads, need the players to follow strict procedures.

I paid the bill at The 649 as Evan was fading fast and the new game had nearly exploded his head. So far, he has assigned 18 Chesapeake with The Hotel Austria as a too complex game to be enjoyed. Maybe next time he will like it better. The stock market is very interesting.

Dondrea sent a hot dish of baked spaghetti with meat sauce; it was an old-school version and wonderful. Evan left before dinner, still suffering from vaccine side effects. After baking it, Corwin and I enjoyed the dish, and the remains are now chilling in the frig. Like most hot dishes, it will even be better when reheated.

Corwin and watched the last episode of The Expanse. The show was successful in ending the show with a mix of story finishing special effects for spaceship battles and political compromises (including a political trick) that are the meat of the show. I am sad to see the eight-year adventure end, but the storyline is complete. The original books stop in about the same place and then skip 30 years into the future. Thus, an excellent place to end.

My mail has been busy. I received an electric blanket from my Aunt Kathy and Uncle Martin (my mother’s brother). On Susie’s side, Annika Hill Weis and her family sent a box of chicken soup and other goodies. I ordered hand cream from Amazon, recommended strongly for my chemotherapy, and was mailed in a plastic mailer. The stuff leaked out and filled the bag with hand cream. This has happened before, and you need to be careful with Amazon, and they just throw anything in a mailer and let it break or spill. I got a full refund. I ordered the same stuff from Walmart in plastic tubes.

I went to bed early as I had no naps on Saturday. I read for a bit and found myself sleeping instead of reading. I did wake in the night, but I did get some good rest.

The morning started with me getting going about 7ish, reading and writing, and having coffee. I take my first pills with food at 10, so I delay breakfast a bit to allow it to be within 30 minutes of taking my prescriptions. Precision will be required once the chemotherapy starts on 28Jan2022.

I head out in Air Volvo after 10:20ish. I had to stop by RiteAid, which has my prescriptions. It is a few miles away and is not my usual place. The Bales Market next to the pharmacy went under. Bales, a local grocery chain, did not survive the changes in purchasing habits before and during the pandemic and disappeared in 2019. The RiteAid is huge and fresh with the blues and greens of the brand, but many shelves are empty. RiteAid is stocking the store as less busy now without physically shrinking the store.

My prescriptions are filled this time, and the normal process of scanning and buying happens. The pharmacist reviews the new drugs with me, but he rushes and mostly reads what is on the label. I mention that I have cancer, and the scripts are for dealing with the chemotherapy, and he snaps out of his standard spiel and wishes me well. He then rushes off to the next consult.

Air Volvo and I head to Forest Grove. I use the navigation to find my way from the RiteAid, and then ignore it and go my own way until it catches up. I do not want to retrace my steps exactly as it is a boring drive.

There are no incidents, and traffic is light on Friday. I reach the Forest Grove Rehab and Care Center at 11ish and pass the rituals, and soon I am in Susie’s room of 44A. Susie is less responsive today and more sleepy. She also has a low blood pressure of 91/50, and we all begin to push fluids. I wake up Susie and spoon feed her 1/3 glass of thickened Apple Juice.

Susie wakes more, and she complains that something is wrong. It takes me about half an hour to learn that she has issues with her hands. The joints are painful. Tylenol is given in some apple sauce as Susie cannot take whole pills.

Before this, I did slip out and have a lengthy lunch at the Grand Lodge, a former retirement home for the Masons now a hotel, event center, with three restaurants and catering. I spent a whole hour there eating a beef dip sandwich (my first beef since the surgery in December) called, appropriately, an Eastern Star Dip (Eastern Star is the women’s organization for the Masons).

Richard had organized a Friday night game of Imperial Steam, a new constrained economic board game. Board games have been developed over the last twenty years that simulate the decisions and actions of building railroads and other engines of commerce. These games focus on generating resources, placement of factories and other means to get money, and the expansion and efficiencies required to be successful. The players compete on the same board and often race to get the best placement and receive rewards for being first. These are known as mean games as the resources are constrained, and the competition can be fierce; plus, these games frequently have complex rules exceptions that can really confuse players, and players must be careful not to over-extend and be unable to do much on their turn. Best to be played by mature, detail-oriented, and friendly gamers.

I have an 18xx game and Brass Lancashire in this style. Richard claims that Imperial Steam is less forgiving than Brass, but I think the new gameplay is easier to do than Brass. Also, the card mechanism in Brass is gone in Imperial Steam, and the map is generated, making, I think, for a better look overall. We had very few re-doing turns in our game which always happens in Brass.

I spent lunch with earbuds watching a video, and reading reviews to get a basic handle on the game.

Returning to the narrative, Susie was less responsive after the pain meds, likely she was worn about by the unexpected pain, the sudden nurses descending on her, and me feeding her for a while. She did get to talk to her mother by FaceTime but did nod off when Leta and I chatted for a bit about Leta’s day.

The hardest part of the day was the hospice folks finally coming at 3:30ish. I spent over an hour meeting with them at a table. They will be taking over Susie’s care which will now be based on End-Of-Life and comfort, and not trying for rehab or continuation into the future. It is tough for me to accept and painful to read the rules and sign forms for Susie. But, basically, we will use a new service, Bristol Hospice, as our medical folks, including calling them instead of 911. They do not supply any nursing help or caregiving; this I knew, but it is still painful to hear. I must hire all my own nursing or do it myself. Bristol Hospice will supply medical equipment, drugs, training, and doctors. In effect, Bristol is managing hospice as defined by Medicare. Thus, there is no nursing for the dying in the USA unless–it is not covered by Medicare–you pay for it yourself or do it yourself (long-term care insurance is expensive and hard to get in the USA). Again, I knew this to be accurate, but the reality now falls hard on me.

I head out with my new folder and things to read, and they do their evaluation of Susie while I drive to Portland. I find that I am a distraction to assessment and therapy for Susie, so I do not usually attend. However, in October, I learned how to get Susie into a car in Mount Sinia West in New York City. This was done as part of the Occupational Therapy and to help me learn how to get Susie in a Taxi for our flight home.

I drive the hour to Richard’s house across the river in Portland. The traffic was light for a Friday, and I only had to dodge one car that changed lanes by taking two lanes at once and the exit. This time done at high speeds. I suspect the driver is originally from California.

Kathline and Shawn, both I have not seen for a long time, played with us for a cut-throat four-person game of Imperial Steam. Richard teaches the game well, and my watching of videos really helped while playing; we do not need the rulebook except for end-game scoring. That is not like Brass, where I find myself back in the rules at least a few times. Kathline and I are first-time players, and we get lost a few times on what we should do. Richard is so intense he has a notepad and is writing out plans for his next set of turns. Shawn is a threat to Richard, but I manage third place, and Kathline, who overextended herself (an easy thing to do), is in last place. We both learned, too late, that the factories are the most essential item in the game. The game is really about building combinations of factories to fulfill contracts which are enabled by producing tracks and trains to transfer goods to allow payments to keep expanding. Kathline and I focused more on trains at first, figuring it was a train game.

I drove Kathline home, and we discussed the game and what has been happening since we last saw each other. Kathline is an architect working in Portland and a German.

I got home after 11 and had a bagel, and Corwin had some leftover rice and ham that I had as a side to my bagel with cream cheese. I took my pills and fell almost immediately to sleep. I slept until my alarm.

Working backward, I was late to bed and was reading before midnight, but I was asleep by midnight and did not wake until the morning.

I have been taking my pills at 10AM and 10PM. Precision will be required when the chemotherapy starts. I am trying this week and next to learn new habits that will help keep me healthy during the three months of chemotherapy.

Before taking my pills and reading until falling asleep, I decided to finish the animated version of the Batman comic, The Long Halloween. This is a two-part film with each part more than an hour and not cheap (over $30 when buying both on my Apple). The new Bat Cave YouTube channel recommended this as background for the upcoming Batman film. Harvey Dent is one of the main focuses of the story and his transformation to Two-face. I enjoyed it, but a couple of times, it felt like a checklist of villains, but the story was complex, and I had guessed the mystery, but the reasons had escaped me. So a good mix of Batman, difficult puzzle, and a tour of villains; recommended.

I also started cleaning off my work table in the house. I am stronger now; the anemia is gone, and I have begun to put things away. Before, I was more like a battery and would run down; I needed to conserve my actions to only essential items and just stacked things on top of another (messy). Now a bit of housework and cooking is not a drain. Of course, I still need a nap to recharge, but the nap length is shorter, and the energy level after the rest is good.

The chemotherapy comes with anemia, low white blood counts, and a host of other issues. So I expect the housework will suffer, but the pandemic has taught me many strategies to reduce the work. For example, I sort the mail by the trash bin outside. Most of the mail goes directly to the trash container. No paper blob now. Extra copies of bills, usually medical, are torn up and trashed. Bills are paid online. It helps.

BTW: all utilities, mortgage, yardwork, and taxes are paid automatically. Only the cable bill and the car insurance require intervention. Medical bills are a judgment call as some bill the wrong amounts, and refunds appear weeks later.

I attended the Theology Pub now Zoom meeting, the second Thursday of the month @ 7PM by Zoom. We have met for seven years (!) and used to meet at a loud pub in Beaverton and talk while eating and drinking about serious church issues. The hardest part of the previous live format was the table was long and the noise a bit much. Being heard was thus difficult sometimes. The Zoom format is easier to be heard, and folks from Idaho and/or other states can join us, but we miss the old Racoon Lodge bar and those fine sour beers (well, maybe just I miss them).

This time we talked about being called and what that means, how it happens, and what are our experiences being called. We did compare and contrast the idea of a calling and gifts (skills if you like). The gifts enable the calling is sort of where we landed on that. Calling is something you find (or it finds you) that gives you a feeling of completion and helps you make yourself and the world better (my words). The meeting went on for just under 90 minutes, with Bob calling us to end when his glass of Grand Marnier ran out.

I finished the other half of my lunch, a Subway tuna fish sandwich, for dinner with a can of peaches. There were fresh veggies on my sub now. Again, the doc said a healthy diet and no restrictions.

I got home about 3:15ish from Forest Grove Rehab and Care Center, Room 44A. I spent multiple hours with Susie, got lunch, and came back. There was a chance that the staff there had managed to schedule a hospice nurse to come. The Legacy folks had called me in the morning and informed me that despite the whole week going by, they did not service the Forest Grove area, and I would have to start over with a new agency that I would have to find on my own. I was a bit unhappy with the Legacy folks as I pointed out that they wasted a week and that despite the fact they do not do Forest Grove, Susie was to reside home, which is not Forest Grove. Logic suggests all they had to do was drive out a few more miles for the interview, and then Susie would move back to their coverage area. That logic or exception did not change their refusal to help. They did call the Rehab nursing director, Judy, and Judy then started the paperwork there in Forest Grove with another hospice group they work with.

Judy and Pre, Susie’s head nurse, started immediately on the paperwork and process to get Susie supported by Bristol Hospice. A group that Judy and Pre know and they said are just amazing. They hoped the paperwork would get processed soon. I thus stayed late as I might get a late hospice nurse in. Did not happen, but Friday may still work.

Moving backward to before lunch, I am now getting there in Forrest Grove about 11ish as I need to take my pills with food at precisely 10AM. Susie was still sleeping but was dressed in a clean shirt and was comfortable without pain.

Susie chatted via FaceTime with her mother Leta and then with her aunts and uncles in North Carolina via FaceTime. Gene, Glenda, and Joyce were happy to see and talk to Susie.

Susie and I watched a 2001 Elton John made-for-BBC concert on YouTube. Susie softly sang along. She was tired, and I let her sleep for an hour. She was so happy that I was there when she woke, something that had not happened in a few months!

I watered her plants when I got there about 11AM, still going backward, and she was thrilled to see me. Her nurse said that Susie just lights up when I come in. I try to be there every day.

I drove there about 10:20ish, and the drive there (and back) was absent the usual jokers, and I made good time. Not sure why driving is better on Thursday, but I did pass two wrecks (who hits a bus?) on the way home. All looked like low-speed wrecks, the damage showing that folks must have turned into someone or gotten in the way.

Still moving backward on the day, the morning started at 7ish and went slow writing a blog and having breakfast later. It is nice to not have that crushing anemia and surgery-induced exhaustion suddenly slow me.

I got a note from my chemotherapy doctor explaining that I should, with only four cycles, not have to endure the loss of dexterity from nerve damage.

I was up and going about 7ish now, taking an extra 30 minutes of sleep. I was still awake at 5ish and then 6ish and fell dead asleep just in time for my iPhone to make me restart being awake again.

Wednesday started with me waking before my alarm. Sleep had come late, and the morning seemed early. But I have to get going once I am awake. So up and writing and reading and making coffee.

I have a later morning appointment with Doctor Frankhouse, the surgeon that removed the colon cancer. So no rush to see Susie. I am also trying to keep my handwritten journal.

I got the address of the RiteAid where my prescriptions were sent in error. Not sure how this pharmacy was used as it is not on my list in OHSU myChart.

I manage to dress and all of that and take my pills on time at 10AM. I have to have them with food, so I have a second donut from a box Corwin bought. Ironically, I am eating his breakfast this time.

I pack up and update the journal. I use Air Volvo nav to find the pharmacy (I was not sure where this one was) and get inside to only discover my wallet is still at the house. Back to the house and then with my wallet, I return the RiteAid a few miles away.

I am now starting to be stressed for time. After a week, I get to the pharmacy window, and the prescription is still not filled (?!). I was worried that they would have undone the filling after waiting for me so long. But, RiteAid’s pharmacy staff is just back after a Covid-19 exposure, and they are a week behind on filling prescriptions. They offer that I can wait for it, but I am out of time. So I told them I would be there on Thursday and headed out.

Note: They had a sign-up at this and my local RiteAid that they have no at-home Covid tests. Another frustration.

I drive to Portland, and the drive is fast and straightforward without the usual creative driving by our over-polite Oregon drivers. It takes no time, and I am 40 minutes early, leaving me feeling like I am part of a Doctor Who timey-thing.

I walk to the pharmacy at Legacy, and they do not have the hand and feet cream recommended for the chemotherapy coming up. I was surprised that the pregnancy tests outnumbered the skin cream count. There were no at-home Covid tests.

I return to the plan and see doc. No issues. I will need to schedule another colonoscopy after the chemotherapy (WTF is all I can say). The doc also explains that some of his fellow doctors lost their careers after undergoing the same drugs because their hands were too numb after the treatment. I will need to be careful to ensure I can still work in IT, he explained to me. I was worried about fine movements, but he explained the loss could be profound.

Note: I woke up this morning worried. I have messaged the doc about this. I have read the literature, and it is possible, and it needs to be mitigated. Interestingly, the risk seems to be related to having the hands and feet get cold.

I stop by the world’s most excellent ice cream, Salt and Straw, and get Susie ice cream (it is frozen rock hard there and will only partially melt by the time I get to Susie). I then stop by Santa Fe Taqueria and have lunch now, including lettuce and beans. I am cleared to eat a healthy diet by doc. I have an enchilada (chicken) and a cheese-filled Chili Relleno, and it is just perfect (my food last time was less excellent).

(Apple and WordPress are not getting along today, but I finally managed one pic)

I then drove the hour trip, with still no traffic on 26, but the locals on the journey into Forest Grove did not disappoint, with one driver going for creative use of lanes and seeing how slow you can go–in the left lane, of course. It was a sunny, dry day, so the excuse that it was raining could not be used today.

Surviving the comical driving without Air Volvo losing any paint, I reached the Forest Grove Rehab and Care Center, passed the entrance exam (normal temperature), and found Susie sleeping in room 44A. I had very melty ice cream for her, and she had five or so teaspoons with me, ensuring that her thrush did not reach the container. I used a cup to get some ice cream for her and then threw the cup away.

Susie was talking more; she was worried as I was so late and seemed to be a bit unhappy in bed. Later she had her head lowered, and the pillow returned to her head and looked happier then. Susan was getting out more words that were more clear. She still could not make herself understood much, which frustrated her.

I did FaceTime calls with Leta and David Smith. Susie seemed happy to see Leta and David today and spoke more and was understood more. Susie’s sister Barb was at a dog park when we called could only do voice, but Susie and Barb had a friendly chat. We could hear the barking.

I grew tired as I had a busy day and so soon packed away my stuff and the ice cream (refreezing here at the Volvo Cave) and said my goodbye. It is always hard to leave, but I need to do things at home and not get too tired.

Reaching home after discovering considerable traffic in Forest Grove and dodging school buses without issues. We have the school buses starting about 2PM.

I rest and, after getting up, order the Utterly SMOOth skin cream recommended (with Urea) by the chemotherapy pharmacist from Amazon. Urea is pee and reminds me of this movie scene.

I could make dinner with more options today, so it is homemade jambalaya (the mix is from a box) with kielbasa, ham, and even shrimp (I had purchased a bag of frozen shrimp for the holidays, and there was still some left). I add a can of Mexican-style stewed tomatoes and some corn.

It comes out good, and I watch the newest episode of The Expanse. This seems a transitional episode so, while it was good, it was not as good as I had hoped.

I also watched the newest chapter to The Book Of Boba Fett on Disney. This, too, was a bit of a transitional episode, and I thought it included ham-handed additions of new characters to the show. I was also impatient with a set-piece chase scene–the show was too good for this. A disappointment.

I went to bed, surprised by how late it was 11ish. As usual, I had trouble sleeping, but I seemed to be asleep by 1ish. I dreamed about driving with my late father, explaining to him what was happening. I remember dreaming that he was being very supportive. But, of course, it being a dream, some SciFi events were going on while I drove, and AirVolvo was transformed into a Star Wars speeder Volvo.