Author: alohawild

The day started with me feeling the weight of doing this every day for weeks without a break. It is not easy to keep going sometimes.

This is the first biz day after Susie was declared in hospice and her provider is Bristol Hospice. The folks at Forest Grove Rehab and Care Center had recommended the hospice provider. So now, as the first biz day, I need to find nursing care for Susie at the house. This would allow Susie to come home.

This weighted on me as I did all the everyday things to get ready. Soon the email was read, the meds were taken, breakfast–bagel, washed and dressed. Today I used for the first time an electric razor, and I did manage to cause a slight issue on my neck. I need to leave the blades as I will have low platelets soon from the chemo. I now have a Remington PF7400 F4 Comfort Series Foil Shaver, Men’s Electric Razor, Electric Shaver, Black. It cost about $40. This one had some decent ratings. I also used the cow pee based creams (!) as those will be needed when the chemo impacts my hands and feet, and I just want to get into the habit of using them.

I order bagels to be delivered and have a bagel with smoked salmon. I will freeze the rest and have bagels for the next few weeks. While Einstein Brothers is not Zbar’s in New York City, the bagels are good.

I travel to Forest Grove a few minutes late, 10:20ish, and have no surprises traveling in Air Volvo. After being admitted, I found the door closed to Susie’s room, 44A. Susie was profoundly sleeping, and they had closed the door for her. I woke her with effort. She just wanted to sleep in.

She woke up enough for me to have her talk to her mother on FaceTime and then she went to sleep again.

Susie agrees that her old clothing can be shipped to Kat in NYC as they are about the same size (when Susie was younger). Kat can have them, see if Natasha wants them (both sisters reside in NYC), or send them to a vintage place and get credit.

Susie woke about noon and was uncomfortable. I asked the nurses to change her, the usual issue and kissed her goodbye. I had some emotions, and I had so much to do with nurses. Sometimes, it was hard for me, and I could not sit there and cry, so I headed out.

I managed to get calm on the ride back. I drove to La Provence for lunch-dinner-breakfast. There I had their french take on corned beef hash with poached eggs plus their excellent croissant. Food is my answer to most emotional items. How do you get through all of this, you ask, about 20 more pounds? But, due to my unique colon cancer experience, I am losing weight instead. Yes, a strange positive, but one I will take.

After getting my focus back with food, I leave the place. The seating and ventilation are not up to my standards–I am very picking about this. I was about 4′ away from the other table, and I felt no air movement. Yikes! As much as I love La Provence, I will be doing delivery or outside seating when it is available. Still, lunch was terrific.

Back to the house, Teresa Cody, who used to live across the street, has the most experience of anyone I know using local nursing and medical stuff, and she recommended two services. As I said above, it is the first working day after Susie was declared in hospice, and Bristol Hospice’s social worker, Carrieann, calls me. We discuss what is happening with Susie and update some details. I mention Teresa’s suggestions, and Home Instead is also recommended by Carrieann.

I go to the website, and soon I am called by the corporate folks at Home Instead. I have arranged for a meeting next Tuesday. I am underwhelmed as I would like to move faster and act this week.

I called Teresa and thanked her, and she suggested I call the Home Instead office and ask them to move up the appointment. It was nice to chat with Teresa, and she and later Leta convinced me to change my plans and Susie will be installed in the living room instead of a bedroom.

I keep Carrieann in the loop and end up calling her back twice on Tuesday.

I do call, and they move the appointment to Thursday. This means Susie might be here before I start chemotherapy. Excellent!

I take a few naps. I am still tired, and I have pain again from coughing in my incisions. I was also passing on painkillers but will return to using them again.

Mariah texts me, and I meet her at the Rock Wood Fired Pizza for a beer and a snack. Mariah has a Yellowbrick Road small pizza. I have just chips and cheese sauce. We chat, and I am finally feeling better as I now have a road forward. It will likely be costly as I am looking at 24-hour coverage (I can’t do some of the work, thereby reducing the cost and experience chemotherapy at the same time), I think, but this is what is like in the USA (likely as much as $36,000 a month). So I will make it work for as long as we need it.

I return home in Air Volvo and have a bagel for a snack with my pills at 10PM. I must eat food with my prescriptions. I finished my crime novel set in 1933 Berlin. The author manages to find a good and cheerful ending for the crushingly dark story. I am not sure I can recommend the books as they are dark, and the main character is not always sympathetic, but I did enjoy them. This is the Berlin Babylon series (also a TV series in German) by Volker Kutscher. I just finished The March Fallen, book 5 (in English).

I wash sheets and laundry. I contacted Matt to update him, and he will help take the living room apart once we know Susie is headed here. He also recommends a cleaning service that he uses. All good. I clear part of my work table, the former dining room table, in the family room. I intend to paint and build models as part of my waiting to complete chemotherapy. I need to use my hands to know if I am losing dexterity from the treatment.

I received a package from MicroMart. There is a lovely wood ship model that I would love to build. I got the OcCre workbench to build. This is used to manage the process. Exciting. I have some wood stains still on backorder I would need to start. I have two wood kits I never finished also waiting for me. Maybe I will get to them soon. Or not.

I have trouble sleeping but finally, sleep after some Benadryl removes all the allergic reactions.

 

 

I started MLK at 6:30ish and got going doing the usual things. I read the news and believe I heard the noise from the volcano in the South Pacific. As you can imagine, I am always, even now, listening for Susie falling. There was a strange sound like a bang that had no explanation in the morning of the tsunami. After all that, I decided to get breakfast out this morning, so I left about 9:45 after taking all my pills.

Before I leave, I watch MLK’s I have a dream video. It is important to remember the struggle of MLK on his day.

I stopped by McDonald’s and had their breakfast while traveling in light traffic to Forest Grove. It was not very good. I am a bit spoiled by all the excellent food I have had for breakfast (I ordered more bagels and smear delivered this morning). I will not be returning to McDonald’s breakfast.

All morning I am conscience not to get worn-out again like the day before. I am also having new pains in my incisions, likely caused by moving more and stretching the area more. I even had a sharp pain after a sneeze and have been sore since. I am trying to be careful, but sneezes come uninvited.

I have not covered this for a while; my stock holdings are troubled by the Nike stock drop from $171 to $148. I am pleased to sell some options last year at $171 and use that money to cover Susie’s care and all of my medical bills; I do not often time the market so well. I also have a pretax 125 program I will use too. My 401K totals have not moved up or down much for the past three months showing a balanced portfolio resisting the strange slides of the market and the growling at inflation by various experts. I am showing a -3.78% growth in 2022, but it is too early in the year to even look at that. It does appear that my 401K has given back all the last quarter of 2021’s fast growth. I have no concerns.

I reach Forest Grove Rehab and Care Center Room 44A without incident and carry my McDonald’s coffee (the only thing good from breakfast) with me, and slip a few sips here and there. I always wear a KN95 (supplied from Amazon), having switched to them six months ago.

Susie is dressed in a clean t-shirt and asleep. It takes her a while to wake up enough, and she falls back to sleep a few times. She is tired now and sleeps most of the time. Susie’s mother, Leta, has supplied a Saint Valentine bear and chocolates-filled heart for her. Susie wakes up enough to hold and smile a bit before drifting off again.

Dr. Kulkarni is Susie’s retired doctor who cared for her first cancer. We managed to connect to her and FaceTime with the doc. Susie cannot get out too many words, but she wakes up to chat with the doc. They are both delighted to see each other.

Susie falls back to sleep while I sit there and read the news on my phone. I have BBC, CNN, and the New York Times app. I read the NYT as the editing and writing are superb, believing that your own writing and reading improve when you read well-written English. But, on the other hand, my friends in InfoSec dismiss the NYT; the paper’s poor and inaccurate reporting on computer issues is hard to excuse. NYT also had quite a few bad moments in the political sphere and was forced to retract many things. Still, their reporting about life events, cooking, and just living get high marks from me. All in excellent perfect English.

It is always hard to leave. Susie is awake again as her somewhat troublesome roommate moved home today. The staff is now cleaning the room, and Susie is awoken by bangs and bumps. I can see in her eyes that she is sad to see me go. I promise to be back tomorrow and kiss her goodbye.

I meet Mariah at BJ’s Brewhouse. There I have a small beer, Jeremiah Red, and a salad. I find I cannot eat the whole salad and leave behind lettuce and cheese. This is the first salad I have had since the surgery. I like my Southwest-styled salads with salsa and a lighter and more spicy dressing. Mariah has a tri-tip roast with the kitchen slicing it (we learned this trick). We chat about Mariah’s house-buying adventures. She has an open bid on a house in Portland and is on pins and needles, waiting for the results of her final offer.

Mariah and I meet at the Volvo Cave, and Mariah has me sit, no repeat of yesterday being tired out, and she moves the books out of the bedroom and sorts them into keepers (mostly history, poetry, and math) and ones that Mariah can sell at Powell’s. We have a few boxes, and Mariah moves four stacks of books out of the bedroom (!) and manages to collect quite a few good books. I also sent some signed copies with Mariah. I remember getting them signed, but they have been collecting dust for years. Time to give them up.

Back years ago and when we lived in Maryland, Leta would visit us, and Susie, Leta, and I would head to the Dick Frances book signing events. We found a small mystery bookstore in Washington DC, and there we were able to chat with the author and his wife at the book signing. Some of the books I let go are from those days. It is a happy memory.

I did move the gamebooks and some magazines from the bedroom. After that, I rested and slept. But, yes, I still need to take breaks.

I watch some videos on YouTube. Cody Carlson, The Discriminating Gamer, reviews a new gangster game which is a “buy-it” recommendation. I also found his new history channel (Cody recently minted Ph.D. in WW2 history) and enjoyed his book recommendations. I leave a few words, which he replies to. I have never met him, but I appreciate his works on YouTube.

Later, I chatted with Kat in NYC, and we will see if maybe some of Susie’s dresses and things can find a new home in NYC. Kat is about the same size as Susie of years ago. I will chat with Susie on Tuesday and see if she is OK with this. I think she will be happy to see the stuff on its way to NYC. If it is not a match, Kat can send it to a vintage clothing store in NYC and pick out something with the credit. Kat was making pasta and sauce dinner, which reminded me to make dinner.

I suggested a dinner to Corwin, and he volunteered to cook. I went back to reading and napping. He made pasta with meatballs (sliced) and one of our new jars for North African styled sauce. This is from Les Moulins Mahjoub and is their tibar sauce. This is an artisan product and hard to get without paying a premium. I found it at about $9 a jar and ordered enough to receive free shipping. It is spicy and not sweat like American red sauces and has olives and capers and like. I do not cook the sauce with meat but heat it, pour it over pasta, and add meat. Strongly recommended as a treat and something different.

Dinner was good; I had two bowls and watched some news. But, unfortunately, I had found new pain and decided that reading and resting is best for the remains of the evening.

After my 10PM pills were taken with a slice of German Chocolate cake, I was to bed. Food must be eaten with the pills.

I managed to sleep without issue, even with all the naps today. I was still fatigued.

 

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.