Blog

The day started hard. I had trouble sleeping, woke up early, and could not get back to sleep. But, I did stay in bed and tried to sleep.

Today was the day to determine what would happen next with Susie. We are meeting with Home Instead, an agency that supplies nursing. I was expecting this to be stupidly expensive but was I hopeful we could still bring Susie home, and I need care support for Susie to make this work. I am sure my worries about this and the fact that I was missing Susie at the house impacted my sleep and stress.

A new problem, minor, has arisen, the electric razor is not working. I think I have a dud. One more thing to deal with. I am back to blades.

I manage to read email, read the news (including my daily news summary from the New York Times), make coffee, and have breakfast within 30 minutes of my pills. I managed to shower and then dress and follow all the new chemotherapy changes. I am trying to get all the habits in place ahead of their need. I never walk without socks or slippers on my feet, also.

The trip in Air Volvo on Thursday morning, the worst day for traffic in the Portland Area, was uneventful. I pass the tests and head to Room 44A at the Forest Grove Rehab and Care Center at 3900 Pacific Highway, Forest Grove. Susie is just dressed and sitting in a wheelchair; about 10:40.

I take Susie for a ride around the facility. We make about three full tours of the place. I put Susie’s glasses and hat on her, and she looks more like herself (with the new fingernail paint that all the aids and nurses noticed and suggested they all could use the same treatment). Later, I saw Pre, the head nurse, joking and even hugging some aids. Folks are very happy here. They love Susie too.

Susie had one of her best days in weeks.

Note: Covid-19 is present at the facility. One resident has it, and the staff count is now 15 with positive tests. Five staff have recovered and now returned to work. This information is given to all the residents and emailed to me.

Susie and I hang out in the shared space and watch videos together. Then, we call on FaceTime Susie’s mother, Leta, and they have a friendly chat.

I step out and rush to Taco Bell for dinner. Again, the food tastes cheap to me, but I am in a hurry. I manage to be back before 1PM.

Erynn from Home Instead meets us. I find a place for us to talk. They cannot cover Susie’s needs as they do not have the staff to cover more than four or so hours in the afternoon. I would need to hire another agency or individually hire extra help. Also, 24-hour assistance would be $1000 a day @ about $40-50 an hour. To cover the 24-hours would require five people a day and likely not the same people every day. I would then have ten or more people in the house a week.

Erynn says I need to hire them to get coverage, but I really cannot move Susie without full coverage. I am also sure that I cannot manage this, and having ten medical people in the house will nearly guarantee a Covid-19 infection. None of this works for me. So I do not hire Home Instead. I am also offered non-vaccinated medical folks, as they are easier to get. I turn that down. That suggestion makes my head spin, and I thank Erynn for her time and see her out.

Susie is falling asleep, now placed back in her room and comfortable in her blankets. I tell Susie I can’t get her home soon and will try to work this some more.

In a pandemic, medical stuff is complicated. I also cannot have that many people in the house. My upcoming chemotherapy limits my choices. I will think about my goal to bring Susie home; it may be unrealistic.

I speak to the folks at Forest Grove Rehab and Care Center. We are welcome to keep Susie there as long as we need. They really do like us.

I kiss Susie goodbye. She is sleepy and falls right back to sleep.

Without incident, I reach home and find a pile of food and flowers on the cooler. Eric Enders and family have supplied me with dinner for two nights (and likely some lunches too). My Core ERP group at Nike IT is helping me get through these challenging days.

I take a nap and think more. I do read more. The book Dead Dead Girls is well put together, but the social justice issues it explores are hard to enjoy. It is not the book or the subject, but my mood. I read the book on my Kindle in smaller bites, which solves the mood issue.

I reheat the chicken parmesan and make the spaghetti and sauce (from a jar) that Eric supplied a bit early. I am fatigued, and food often helps. I eat dinner while watching the cold war By Dawn’s Early Light film. It is about a nuclear war breaking out between the USA and the Soviet Union. A group of terrorists captures and launches an ICBM triggering the unthinkable. Rip Torn plays the insane general urging an all-out nuclear war previewing his better-known Down Periscope and Men in Black persona. James Earl Jones plays the sane general who saves everyone by crashing his plane into Air Force One to allow the president’s ceasefire order to get through. The elected president is not on the plane, of course. The movie heavily borrows from other like films, and I would suggest the black and white Failsafe (1964) over this somewhat bloated film. The book by the same name is also great.

Yes, it was a strange choice on such a tough day, but I discovered the movie on cable and watched half of it. Just wanted to finish it. The best part was that James Earl Jones runs out of cigarettes, he smokes harsh unfiltered ones, and every one offers him lighter ones and calls out for someone to get him a real cigarette. He quit smoking but started smoking on the plane when the nuclear war started. Finally, just before he crashes the plane to save the world from full-out nuclear war, he gets a real cigarette. Not appropriate anymore, but still funny.

Returning to dinner, the food was excellent, and I have to admit I had seconds. I have enough left for lunch today.

I do a tiny bit of housework and organizing and then read and go to bed late. I again have trouble getting to sleep.

I slept in to after 8ish as I had trouble waking up. This made the morning a rushing push. I was not to leave until after 10:20. So again, I am delaying food until later and eating within 30 minutes of my pills at 10AM. I was hungry later, so I will have to try eating twice. Maybe two bagels this time.

Air Volvo and I traveled in the heavy Oregon mist without issue. Some of the flooding I see while traveling to Forest Grove is receding. It is a typical winter day here in the Pacific Northwest, gray and wet.

I reached Susie near 11ish, and she was awake, dressed, and having a good day. Her new roommate was getting dressed, so I waited until that was done. Susie was better today and happy to see me. She is still confused and says that she cannot see me when I am in front of her. I wonder if the stroke affected recognizing faces (I have heard that can happen). But, she was happy to see me.

Susie is showing no Covid-19 issues, the Forest Grove Rehab and Care Center (Susie in Room 44A) outbreak is growing worse. The facility reported now that a patient has been infected and seven staff members. The residents are tested every other day.

I head out to lunch, feeling a bit off as my meds I think expect more than a bagel for food. I promise Susie I will be back in about an hour. I travel just a mile to the Grand Lodge and get a seat at the Iron Grill.

I have soup and an appetizer of hummus with pickled veggies and pita bread. It was more than I wanted to spend on lunch, but I wanted to stay healthy while not just having soup.

I returned to Susie about 1ish. She was still awake and even more talkative. It is nearly impossible for me to understand her, but she is trying. I clean and repaint her fingernails pink. This takes some time and requires her to hold still for a while, something that is harder now. We manage to get the paint on without getting it all over the bed or furniture.

I still fell a bit off, the incision pain is back too, and so I headed out just about 3PM. I return home without incident with Air Volvo seeming to auto-drive. I will admit I was not paying attention at one moment and the auto-steer did adjust for me. Air Volvo will not let you drift out of a lane and gently nudges the wheel back to the lane (this allows you to manually correct). Yes, auto-braking, auto-steering correction, lights in mirrors to let you know if there is a car near you, and other items make Air Volvo safer and more fun to drive. It also kills the engine and restarts the car instead of idling and generating pollution at a stop. I truly love this model of XC60 and paid it off. It is all mine.

I take a nap when home. I am surprised that I have still not recovered from my surgery, but the docs warned me that six weeks is the more likely recovery time. I need to slow down a bit and do by pulling up a blanket and reading. I sleep for 90 mins or so.

I am reading a new book, Dead Dead Girl. This is a crime novel set in New York City Harlem of the 1920s and it is a good mix of crime and awareness of what it is like to be a black young girl in 1920s Harlem. This is the first book by Nekesa Afia and will likely be the start of a series.

I manage to get started again. I pull off the sheets of the bed and wash them. Next, I must move Corwin’s clothing to the dryer (growl). I also move my clean cloth to a pile of unfolded laundry. I will have to put that away soon.

I clean off my work table the dining table in the family room. This is a flat surface I have thrown things since getting back from NYC. I have the focus and strength to start finding my table under all of this mess. I throw a lot of paper away. I put a few tools away in the garage.

In the garage on the garage door is a huge, six inches, slug. I have no idea why the huge slugs enter the garage as it is dry and dusty, but huge slugs wander in. This one is huge and fast for a slug. Ick! I ignore it and hope it does not get underfoot (extra ick!).

I make dinner. I have a simple feast of a Chicken Cordon Blue from Schwann’s and a microwaved potato with the works (butter and sour cream with sea salt and lots of pepper). I had not put out any butter to get to room temperature, so no sauce this time.

Next, I read the Baker Creek Heirloom Seed Company’s entire catalog, which is massive. I daydream of having a hot house in the backyard to grow exotic herbs and peppers. I also have seeds for violets and Nasturtiums, all editable, and ponder purchasing the required equipment to start them indoors. I am just on the edge of the growing time and this year I wanted violets and nasturtiums in my front garden. Maybe. The upcoming chemotherapy makes this more complex,  but these are the easiest of easy plants. So still, maybe, and violets and nasturtiums would be nice and edible too.

On a more practical side, I find more stamps I have purchased in auctions waiting to be placed in my collection. Stamp collecting is a lonely hobby and so it takes a second to board game playing and coding, but I have done it since I was a kid and know too much to put it away and not return. I also have invested in reference books so I have expertise. I carefully place the newly acquire stamps, US and US revenue stamps most more than 100 years old, in my album in nice plastic mounts I cut to fit. I do discover one of the more expensive stamps, a revenue stamp so not part of my regular US collection, is a repeat, it happens, as one of the stamps next to it is set in the wrong place. Oddly, this is a $350 stamp and now have two (managing to acquire a copy with a small hole for 1/7 of the catalog value a few months ago). I must have acquired the expensive stamp years ago and misplaced it in the album–I once purchased two collections and wonder if it was misplaced in the original collection as it was not that expensive. A mystery that I will not resolve. I correct the mistake, now having an opening in my revenue stamp collection of a much cheaper stamp (!), and put the spare stamp on the side in the collection. It is too valuable to just add to a pile of spares.

It is relaxing to bring order to chaos. However, I have yet to place the new local carrier stamp (this includes the famous Pony Express and West Fargo carriage runs that replaced the Pony Express) additions to my album. I have no book for these so I have to manually create sheets for them or add them to a stock book I use for the local carriers. To validate these stamps I bought reference books and validate that each stamp is not a forgery (the books are hard to find at a reasonable price, mine are from an auction). I am not going to use all the extra energy that requires now, but that newly acquired Pony Express I have to validate is really cool and I hope it is a real copy.

I collect, as a sort of requirement, forgeries too. I get them unplanned and sometimes in some auctions for reasonable prices. Even the forgeries are famous for the local carrier stamps and get sold for premiums prices clearly identified as a forgery or reprint. These forgeries are from the 1800s and early 1900s and are now more than 100 years old and the criminals are famous in the stamp collecting circles.

I enjoy the new book but have trouble sleeping. I finally drop to a night of deep sleep as the clock last said 1:45 when I look at it.

 

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.