Getting started again at 6:30AM to take the steroid was hard on Sunday. The stiffness from walking and the up and down all night for proof of hydration had taken their toll. I am shakily tired now. I can barely lift the coffee pot when making coffee, and not all the water makes it into the coffee maker. It is a tough day. It is also Day 4 of Cycle 2 and thus the last day of taking the sleep stealing steroids.

The morning disappears as I am slow and tired and read lots of war news on Putin and financial information on the USA. I finally get started on the blog, and that habit helps. All of the disciplines help as it creates a framework to follow. I remember some of my classes on how to work at Nike and how to handle difficult tasks, and to eat the “frog” before it grows bigger and is hard to choke down.

So no giving up, no delaying, just keep going.

I am surprised as Susie calls me from the Forest Grove Rehab and Care Center, Room 44A at 3900 Pacific Highway, and lets me know it is OK that I don’t come today. She is pleased to hear my voice, but she knows and remembers what is happening to me and calls to stay home.

The cold sensitivity is improving, and the stiffness is fading (the stiffness is gone on Monday). But the exhaustion is full-on. It has been a long time since I have been this tired. I don’t dress and finish my spaghetti from last night for lunch.

Pills are, of course, taken on time.

I am late to watch the streaming church service but manage to catch most of it. It was done well, and Bob’s sermon was good. I have been asked to do one, and I might stay with the pre-recorded process like Bob. However, I will need to be a bit better before putting the energy into a 20-minute sermon.

More on speaking, sadly, I turned down a speaking engagement, all expenses paid, to Australia presenting Nike and its use of the SAP software. Previously, I was scheduled and approved to speak at the start of the pandemic (of course) and even had seats paid for Susie and Corwin to come (I picking-up very reasonably priced tickets for them). The conference was canceled and then rebuilt as an online product. Instead of speaking in some dry video, I did some fantastical online discussion using super well-working online conference software. I had a one-on-one with fellow software customers called SAP with folks in Australia. It was a kick, and I went all out to help the conference people as they were being crushed by the pandemic.

The Australians remembered me and wanted me back. I told them I was ill and hoped they remember me for 2023.

I used to speak at two conferences a year for Nike, often three or four times, and do a dozen international presentations online using Zoom+ or other software. I try to get my fellow younger team members into these habits too. It is scary and fun and a chance to grow those non-computer skills. Also, information Technology groups and church groups are by nature very forgiving to speakers.

In our Greater Portland Area, I also recommend Meetup to connect to people. My friend Garrett used to run Knowledge Mavins on Meetup, and I have enjoyed that when I can connect with him and the group. Sadly, a lot of sad today, the Meetup is now gone as it was not possible to keep it going during the pandemic, but I have hope that more things will return once the scourge of the pandemic fades. I still get updates from the Python AI group. Looking forward, someday, I will get to see Ernest and his friends again and discuss squeezing intelligence out of data. And I expect I will be smelling up some meeting with Garrett with solder smoke again in less than a year.

With all this hopeful writing, I have to admit Sunday sucked; I spent most of Sunday asleep or mostly asleep in Susie’s chair in the living room or lying in bed. Not much to tell about it. I would nod off, and then anything would reawaken me in 45 mins. Repeat. Not exactly restful.

Corwin vacuumed and cleaned while I slept. Our new guidelines are being followed.

Ingrid had reserved today’s Mealtrain, so we ordered Mexican food delivered. I found it hard to eat. The small meals thing is presenting. I managed to eat the food, but I will be more mindful of my choices now. Thanks, Ingrid!

Corwin wanted to watch the old show The Boyz on prime, I think, and I had seen it before. It is superheroes and dark and well done. I did not like it the first time I saw it, and it, for me, is not working. I managed to stay awake for three episodes before just falling asleep. The main character is victimized, and I never got over that. Not recommended.

I did slip in a bit of Reacher on prime and still like that show. I might have to read the books. Recommended and from a recommendation of the Smiths.

I got a photo from the New York City team, Jason, Natasha, and Cat. I had sent a copy of the modern board game (I learned that this is a modern board game in a video from Shut Up and Sit Down) Architects of the West Kingdom. This is a neat new system only a few years old that is easy to learn and hard to master. It also contains different focuses to win and thus luck’s impact is much reduced in the game (one of the strong complaints against another excellent game Wingspan). The photo sent was of the game board and a note that the lawyer, Jason, was already involved in the Black Market. This game, like so many, is best learned from a video and a teacher if you can find one. I learned it at the Gamestorm Gaming convention in Portland a few years ago. And, played it a few times with Richard and his crew (I was crushed each time). The game is designed in New Zealand and they have other fine modern board games that are considered, with add-ons, some of the best of this scale (a few hours of play). Corwin loves this game, too–he likes all the options. It also is a small heavy box instead of the monster-sized boxes. The last word on Architects of the West Kingdom, it is played with 1-5 players and I believe I have played all player counts and find it works well for all, an incredible job of game design!

Sleep did not really come to 2ish this morning, but I slept, blessedly, many hours and managed to start at 8:30ish. I am feeling much more positive today.

The morning started with me waking too early and being up 90 mins before 6:30. My knees are painful and won’t bend as expected, so the cane is mandatory. I also find that the clock is spinning fast, meaning the chemo-head is back, and I am plodding or at least getting stuck watching and reading more details into my news reports and email.

Thus it was a painful, difficult morning. The cold sensitivity is worse, and my fingers burn in the cold. I have to wear my winter gloves in the house.

I managed to take the steroid on time and all my other pills as required. Discipline is my life, literally in some cases, and I keep safe.

Aside: Three days with a combined 8 hours of sleep is crushing me too. This morning, Sunday, is showing shaking exhaustion.

Corwin has a ride blessedly, so I can continue with the blog and run slow with the burning cold in my hands.

I have a simple lunch and then head into the carefully heated shower, and the warm water and just standing in the shower seems to be transformational. I manage to dress and suddenly feel better, and my physical moves are more predictable.

I have balloon parts at the post office and managed to enter Air Volvo without issues, using the mask to keep my breath warm before leaving the house. The mask now has two uses!

I manage to handle the exchange of my notice and flash of my ID to get my package. I now have deadeyes, thread, scale lumber sheets, costly laser inscribed decking, and scale rigging. All delivered perfectly from HisModel.com in the Czech Republic.

I managed the post office without mishap, so I drove to Forest Grove Rehab and Care Center at 3900 Pacific Highway, Room 44A. I stopped by McDonald’s and purchased two cheeseburgers and fries–no cold drink. I had those in the car. Dad always got the cheap burgers, and I always think of him. They are, sadly, I think the only good burger I have found at the burger joint. All the rest seem dressed up and not good to me.

Entering the facility with my legs hurting as my legs unlock from being in the car, I pass the entry process and find Susie had lunch in bed today and seems a bit tired. I am tired too. We connected to Leta, Susie’s mother, and Barb Susie’s sister by FaceTime. Barb was there to have lunch with Leta and to fix her email.

The fatigue came on fast and left soon. I returned to the Volvo Cave without any safety warnings firing during the ride back or, more importantly, not leaving paint on other cars, trucks, and buses.

I took a nap. I was not awake until 6:30ish. Usually, I can’t sleep at all.

I ordered some food using the remains of the various cards on GrubHub supplied by Nike colleagues. Thanks again!

I order Italian, and I have a terrible time with cold sensitivity even with the food hot. Eating while my hands burn with cold. Even the hot food seems cold. My arms now burn with cold too.

I watch two episodes of Reacher on Prime after getting recommendations from Michelle Smith for the show. I did enjoy the first two episodes and would recommend them. It has a mix of crime, spy, and goofiness that appealed to me.

I also continue with Jack Cone’s reading recommendation of Americana and have reached the Gold Rush history of the USA. It is still a page-turner narrative you don’t find in history books. This is really a long essay, and I think an example of excellent writing of a persuasive essay. I recommend it.

I had a long discussion with Corwin that evening, and he agreed to work harder and smarter and help more. Susie told me to keep him around and make him work harder (well, that may be me adding to her wishes, but I am sure she would align to it). Susie wants Corwin there when she returns, and Corwin has been making amends with me since I was very directed with him. We have set new guidelines in place.

I finally went to bed and read and tried to sleep. Unfortunately, I had to get up and take the anti-nausea meds, which mixed poorly with the chemo and had my mind lost and not sleeping. I might have slept well a few hours. I was also overly hydrated from the pill taking and taking to Corwin, which meant many proofs of hydration.

Thanks again for reading and for all your kind words on the phone, on Facebook, and in other media. Today, Sunday (Day 4), is when some of the meds clear and the other side effects awaken like sleeping demons. I will be careful as the cold sensitivity and muscle issues recede, and I am tempted to overdo it.

On Friday, the side effects are freezing me. I have extreme (worse) cold sensitivity that even hits when I am in the house at 70F. My knees are frozen, and my movements are still and unsteady. I use a cane now and have some shaky moments starting and stopping. The little step outside the house was hard the first time, but I am ready for it now.

I manage to start the day with no sleep and am happy to still be able to get out of bed and do the usual things. Even eating is hard, and I take my 6:30 pills, and there is no return to sleep. I am also going slow. The clock spins, and soon it is 10AM. I did the blog the day before, so I am not writing this morning. Not sure I could have done it.

I manage to drive Corwin to work and then drive-thru at Wendy’s for chili and a baked potato. I bring them home and combine them for lunch. Excellent that all this worked. I am feeling better about seeing Susie.

Richard and I have decided that a game on Sunday is too soon. So too is today’s (Saturday) agreement with Matt not to play in Dungeons and Dragons on Sunday. But, again, too many steps and too much risk. So I look forward to a recap.

I manage to dress and am careful to heat the shower and use the handles, even heating them with hot water, and apply the Utterly SMOOth product to hands and feet, and the cold issues actually improve. Wow, who would think that would work, urea!

I return to one leg driving; I am a lazy driver and use two feet to drive. Unfortunately, the left leg misses the brake pedal. That has happened before when my shoes are wet. So back to stumping the brake. I can go both ways driving!

No other issues than some strange driving of slow and fast and the unique braking for green lights that you see in the greater Portland area.

Susie is having one of her best days. She is back in bed as they get her up for eating, and I am between meals in the mid-afternoon, which is my best time with the mandatory 10s for the chemo meds. Also, the chemo-head is causing the clock to run fast. This should stop in a few days.

Susie made a movie for you (some conversion things might delay you to seeing it, so read on and come back to it):

Here is the pic that goes with it:

I had a pleasant short visit with Susie. After multiple issues, we finally reached her mother and my mother to chat with her.

I then met Mariah at the Grand Lodge and had hot tea and a messy Compass Pizza. Mariah had some wine and a salad with chicken.

We chatted about Mariah’s house purchasing adventures. She is getting outbid by insane amounts. If there is any sign that we are in a housing bubble, this would be it. Mariah is frustrated with this, but she can slow down for a bit and maybe do something enjoyable instead of rushing it.

I went home and had no issues with driving at twilight. Corwin found his own dinner and went out to the gym, leaving me to watch the rest of the second season of Miracle Worker, which I liked and saw; they finally started connecting some of the episodes and finished well.

I read Jack Cone’s recommended book Americana, which helped me forget the cold, the pain, and slight nausea. I fell asleep a few times with finally a long sleep to 4AM. I was up finally at 5AM. The best I can do for day three starts Saturday.

Here is the finish for the balloon model before I was frozen by the chemo. I will return to it in a week or so. I put Shaggy from Scooby-Doo on the model for sizing.

The rigging will change, but I needed to have the glue dry with rigging applied. Two magnets are hidden in the “skins” to mount various items. The rest of the stuff came from the Czech Republic, but I missed it and have to go to the post office for it now.

Thanks again for reading, and I am thankful that the cold sensitivity slows as I move around. It hurts to type at first, but my hands and fingers and keyboard are warm, and then I can make this work. I will not edit as carefully as I am out of time. Please forgive and wooden language.

It is Thursday when I try to write this. The infusion has given me impossible extreme cold sensitivity. Anything under 98.6F (body temp) is burning cold to me.

Susie on Wednesday morning.

Wednesday: 16Feb

Working backward for Wednesday, I went to bed a bit late as I had mistimed my meds, so I waited until midnight to take them. A mistake that will not happen once I am back on chemo. While waiting, I managed to finish the initial layer of “skins” on my ballon model–I am building a Dungeons and Dragons (D&D) scale ballon for the next campaign. I also used some wood strips to make a tiny deck put on the very top of the model to attach all the ropes. I also tied some rope around the cork in the gas bag. I think that will add some drama. I also sewed the edge of some light-brown felt. I will glue these on to add little patches. Again, it increases the drama of the look.

Before this, I rested and chatted with some folks. I plan to return to Roll20 and play StarFinder Role Playing Game (RPG) with some folks. StarFinder is a space opera RPG. The RPG is a neat rework of the Pathfinder RPG, a rework of D&D earlier 3.5 version. Famous for giving the players insanely complex powers and combat sessions that could last all night. And replaced with 4E, which is now considered a failure. Most of my 4E books went to GoodWill. StarFinder can be complex with rules to fly space ships and all the expected gadgets plus magic. Oh yes, a crazy game. Roll20 has a free trial adventure online with video chat and the rules built into 2D maps!

Corwin and Evan had dinner with us. I ordered from GrubHub. I want to thank Osman Eygu, Jim Sherwin, Michelle Vondenkemp, SEC leadership, for the last couple of dinner nights. It is very kind, and it helped!

Before this, Evan remained in the Air Volvo; I was in RiteAid getting snacks for Thursday’s beginning of Cycle 2 Day 1. It starts with me taking the pills and then showing for the infusion. More on that later in this two-day blog. I also got a prescription before it ran out.

I had to leave The 649 bar at 6ish to pick up stuff at RiteAid. Evan and I had a snack of Fondue with sausage and bread and green apples. I did have one pilsner there, and the bartender mis-poured and gave me 1/4 of a hoppy beer that was quite good.

We had come to The 649 after seeing Susie, and there we played Unsettled, my newest game from Kickstarter. I am still loving the game. Evan just liked it as it was his first play and did not watch the video, which left me to cover all the mechanics. I think once he gets it, he will enjoy it. I think it will play better with three (or more) players too. Unfortunately, we died within sight of the ship.

We set up the game, take the whole table, and order drinks. I wanted to see how it was set up out of the box as I had followed all the teardown instructions. Unsettled set up faster than I expected.

We drove from Forest Grove before this. We found Susie in bed at the Forest Grove Retirement and Care Center after being up for breakfast. Her speech was even more precise, and she was trying to chat with us. She was happy to see Evan with me, and I called her mother, and they talked on FaceTime. Leta was pleased to see Susie. We called Peter Koper next and Susie, and he spoke for a few minutes. He also asked about my status, and this let Susie again her what was happening to me. She struggles to keep it as she cannot retain new information very well, so hearing a repeat helps.

Soon it was time for Susie to get up for lunch. So Evan and I left for a bit and had lunch at the Grand Lodge just down the road. I had a diet drink and an Eastern Star Dip (a French dip but renamed in honor to the Masons that built the place). Evan had an Old Fashion, a 1/2 sandwich, and mushroom soup. All the food for this place was more than above average. McMenamins, a local chain, in my experience, can be hit or miss, but the pandemic seems to have improved its quality.

Susie was nearly overwhelmed when she saw us return again. We spent another hour or so with her. I got various old rock videos on my Apple, and we did some singing. I tried not to sing as nobody deserves to hear me sing rock, but it is hard to resist these songs. Susie enjoyed the singing and the music. Finally, I had to leave as I wanted to hit The 648 bar before it filled up. Susie knows I will not make it on Thursday.

Susie FaceTime with mom on Apple.

The morning was a blur of getting ready and racing. Evan was coming over and would get to use the new shower as he was playing Pickle Ball all morning. So I was rushing to use it first. I just managed to finish the blog and pop in before he got there. Just a challenge to make the morning more interesting. The plan was to get to Susie before her lunch and then play a board game at The 649.

Time seemed to fly away for me on Wednesday, and I was up before 8, but I read email and news for a while and soon was running late.

Thursday 17Feb

The infusion and other meds are making this very difficult. I have much worse extreme cold sensitivity. The 50F choked me and blinded me. I am now using a cane as the muscles are not working in the correct order (worse than before). Thus my movements are unstable. Any muscle group not used for a bit is hard to control. Talking is almost slurred at first. Eating, walking, or picking up something might not work at first.

Going forward for today, the day started at 6:30, the starting time for the first five days of Cycle 2. I don’t write the blog in the morning as I have to get to OSHU in Portland on the Legacy campus off of 22nd. I have all my snacks, laptops, Kindle, and magazines in my bag.

I take Air Volvo, just me solo, to OHSU Knight Cancer folks to Portland. A black new buy gas-powered Ford Mustang drives all over the lanes trying to find a way through the slow Oregonian drivers. The driver manages to improve his position by two car lengths at significant risk to the excellent paint on the muscle car. But, I do cheer the drive on. I make it to the parking garage for Legacy with twenty minutes to spare, 30 minutes trip.

They are ready for me, and we follow the rituals. No International travel, but I did look before Putin made it a less likely choice, at Odesa on the Black Sea. I tell them. I think the gal taking my info nearly sighed; everyone wants a break.

It takes two tries to get an IV with the long needle. Finally, it ends up in my left arm in the joint, the most accessible place to put it. My labs are good enough, and the doc, Eric, walks me to the infusions seats. I pick the corner one.

This time, the process seems much faster; I am reading a book on my Kindle, Americana, recommended by Jack Cone, and time just seems to run fast as I am reading. The book is an essay on American History and its impact on the lives of Americans. It is primarily a story of economics as told by the author (who was once an Economic Immigrant to the USA from India). The story of slavery it tells is hard to read as you wish for a different answer about the founding fathers. I agree with Jack: recommended!

Aside: I finished The Bright Ages. The book is highly recommended by me as a new look at the Medieval period and to expose the false narrative used by fascists and white supremacists referring to this period.

All the side effects are there and worse. The cold sensitivity is far worse, and the bees are back in my bloodstream from the steroids. I am a wreck, but I manage to get free and drive Air Volvo home; no issues there.

Getting out of the car is hard. The cold, 50F, is harsh. Even my legs are impacted and burning, and I can barely get my legs to bend and work. I have my hand on the car, using a glove as the cold metal burns like fire to me. I manage to get inside with everything. I grab the cane as I am unstable.

I order food delivered on Grubhub for some falafel, which seems safe with some hummus. My fingers are burning with cold, my breathing is troubled as the house is cold, 70F, so I set it up to 73F, which helped last time, and get under the electric blanket from Uncle Marting and Aunt Cathy, who lives in Wolverine, Michigan.

The food helps. I take a nap. Corwin makes a Blue Apron meal, I get them as a way for him to help, and he likes to cook. I am under three blankets, fully dressed, and a robe.

When I woke, Beethoven’s 9th symphony was just reaching the good parts. I turned it up. I had put on to help me get going, but I slept through most of the first two movements, which helped. Corwin loves it too. He thought it would work for ‘V’ for Vendetta, which used 1812.

And it worked; I am up and writing the blog for two days, had a steak dinner from Corwin (excellent), and trying to not hurt myself with cold, and using a cane. So cycle 2 sucks, but I am marching through to Beethoven.

Thanks to everyone for reading, praying, being supportive, and just being there.

Going backward describing Tuesday, the pain in my incisions was quite bad as I tried to sleep. Pain killers were taken earlier, and the pain drifted away as I did into sleep before midnight. It was not a lot of pain. I think I just had enjoyed too much dinner, and/or my sneezing from the pollen from the last few days of good weather in Oregon might have stressed my incisions. It is terrible to have pressure from the inside!

Before the pain grew, I was working on my balloon model; as the chemotherapy starts on Thursday, I wanted to get some more done before I likely will have to wait. I tore up more of a paper sack and glued the pieces on a 6″ craft ball to make it look like a make-shift airbag from various skins sewn together. Like many cool modeling ideas, it takes time and careful repeated steps to get the look right. I also cut and carved a bit on a cork making the sides more angled for the well cork for the balloon. I plan to wrap it later with little bits of paper and then finish with ropes, heavy to scale anchor rope, to make it look more finished. I will be sewing some pieces of cloth to put here and there on the model to get a bit more drama. Oddly, I have a bunch of heavy sewing needles for my wearable work from AdaFruit. The last time I had hand sewing, it was with metallic thread.

The pain got worse, and the model needed the glue to dry, so I took some painkillers. I hate to do it as my ability to stop bleeding is likely already impacted by the chemo meds, but it hurt.

Before this, with the pain just starting, I had a few more bits of Chinese-styled dinner paid for by my friend and long-term co-worker at Nike, Don Eytel. Don is one of the few folks left who will tell you he worked on AS/400 computers from IBM and might even admit that he once knew the unique (insanity causing?) language RPG II (not RPG2, but as IBM made it RPG II). Don, like me, has worn many hats at Nike over the years. Thanks, Don!

Before this, I reset the table in the dining room and played another game, just me playing both sides of a two-person game of Unsettled. This time following the rules and the planet effects on the distress cards (which we were less than disciplined following in the previous game). As this is a cooperative game, me playing with me was highly collaborative–but the focus was less on playing than to get the rules and process right: Meaning I died. I then tried to put the game away.

Newish designed games contain trays that allow you to reset the game and be ready to use next time. But, this requires following a process again with discipline. It took me a while to figure out how to do it–yes, the set-up instructions are pretty detailed, but you do not expect the same intensity for tear down. Nevertheless, I managed to get Unsettled correctly in its box, find the planet components, and get those back into their respective boxes. Unsettled comes into main parts, the base game, and, in its own box, a planet that is the scenario of play.

Aside: The game has a strong following on Facebook and I put some details there, including this photo, and then answered questions about the game from all over the world.

Before, this I had dinner ordered from Happy Panda. More Americanized food than ethnic, but I used to go there for years with Michael Giessner and Michelle Smith, so it is kind of comfort food. I ordered noodles, too, as that is Corwin’s fav.

Before all of this, I was reading and trying to relax. Usually, I would go somewhere to ramp down and write in a coffee place or something like that, but with Covid-19 newest versions out there and masking wearing being shut down, that is clearly unwise. I also start chemotherapy on Thursday for cycle 2 and do not want to mess that up. Thus, I read and tried to rest. I did not sleep as I wanted to sleep better that evening.

Before this, I reached Susie’s facility just before 1ish. Susie was having lunch at the Forest Grove Rehab and Care Center at 3900 Pacific Highway, Room 44A, but not in her room but out with the nursing station. The aid was feeding her, I took over from her. Susie was having trouble with the blender-ed food. She could not swallow it, and It was a bit dried out. One of the puddles was a dinner roll and was Susie’s fav (I saw the ticket for dinner that listed what was on the tray included a blender-ed dinner roll). But, again, one has to put the strangeness of the food out of your head and just help Susie. Next, she had trouble swallowing it. I got her to drink honey-thick water between bites, and that worked. Susie completed about 1/4 of the food, which was good with the swallowing problem and the dry nature of the food.

We then traveled through the facility and called Barb, Susie’s sister, in the large hall. Leta, getting worried, called in the middle of Barb’s call. I called Leta, Susie’s mother, a few minutes later. Cathy Thoma called also. We talked about Cathy’s recent loss (I will not explore her recent loss as that is her story and would not feel right to express it for her) and my everyday adventures with colon cancer, and she got to chat with Susie too.

Susie seemed to melt into the wheelchair, and her hands were very close to the spokes of her wheelchair. I asked the nurses to be careful, and they said to leave her near the nurse station; Niche, the RN, will keep an eye on her. I left Susie with a kiss as she fell asleep in her wheelchair. Lunch and all the talking had tired her out.

Driving to and from Forest Grove allowed me to explore the unique relationship that many Oregon have with space, time, and roads. The most impressive moment was an older man near the prison, stop all the traffic by just stepping out and waving. Being polite and many overly-relaxed drivers, he stopped (Aside: Grammarly suggested the word “Exterminate” for “stopped”–their last software changes seem to be a bit aggressive), and he then reached his bus, and traffic resumed. When pushing Susie in Portland on her walker with a seat (a rollator), I have stopped all the traffic too, and the PDX folks would smile and stop for me. But, I was not expecting that in Hillsboro next to the county lock-up. Every trip comes with new learnings.

Before this, I wrote a 1,800-word blog entry, which delayed me. Editing is a long process; Grammarly found nearly a hundred mistakes. It was fun to write so much, but it slowed me.

The morning started without issue and the usual processes. All followed with discipline as the chemo begins on Thursday.