Blog

Starting with the now (Sunday), I am up at 6ish to take the steroids. I managed to sleep for five or so hours. I have to get up early and take the “bees in my bloodstream” pills early, so they are mostly over when I finally sleep about 1ish. Unfortunately, the area has an air-stagnation warning, and the coughing and wheezing are back. So waking at 6 AM, which was to just take the pills, has begun as my start as lying down just makes the wheezing worse. Also, nausea reappeared, so I took the zombie-causing 1/2 pill for that and an anti-allergy drug. All with the drowsy side effect. So I will see how we do on this blog.

Back to the blog story, Saturday started with me getting up after having no sleep the whole night. I was wired and had some stiffing-muscle side effects. Likely the other chemo drug, Capecitabine, was now impacting me. I take this drug twice a day for 14 days. Nausea was also joining me in the morning, and thus I took the steroid at 6 AM and 1/2 a bill of the anti-nausea drug. The cold sensitivity was going full-blown, and slippers are needed; thank you, Linda (my sister), for the new slippers, as my toes began to burn when I forgot them.

Full kitchen mittens to get out a frozen bagel. The surprise was burning my fingers on the room temperature knife to spread the schmear on it after toasting. Coffee was made with some issues as I use cold water in the machine.

As the morning goes on, the stiffing happens in my hands and jaw, making eating and enunciating more challenging. My arms are also showing issues. My knees start to lock too.

I am getting up too early–6AM, taking the allergy med, the zombie-inducing anti-nausea med being just co; I sit in the chair with a blanket and stay there for a few hours, actually sleeping for two or three minutes. Then, I nod off, and then I wake up immediately as the steroid is still running me at full speed.

Thusly, the blog is not getting done. I gave up a chance to play Twilight Imperium at Richard’s, which appears to be a wise choice. I also need to pick up my copy of the new Kickstarter of a new game Unsettled. Mariah was taking me there by piloting Air Volvo to Vancouver, Washington, just across the river from Portland.

I was going to visit Susie today, but the total lack of sleep and the impact of the chemo makes this an unwise choice. I called the facility and talked to Susie’s nurse, Alex. Susie had breakfast and was sleeping a lot. She is also sleeping at night; Susie often mixes up her days and nights, so I was worried. I tell Alex to tell Susie I am OK, but I will not make it in today. Mariah has agreed to visit today in my place, and that is explained to Susie.

Mariah and I push the trip to Vancouver until late morning. I am not ready, and there was some black ice in Forest Grove, and Mariah wants the ice to melt more.

My first shower with extreme cold sensitivity showed that only my toes and fingers were impacted. So many jokes there. I also have some issues in my throat, mouth, and nostrils I have already learned. No cold drinks and no cold food. Do not breathe in cold air.

My hands are shaking and are stiff. No razor this morning.

Mariah will see Susie after our trip. We travel in Air Volvo, Mariah driving, without incident and little Saturday lunchtime traffic, and I only saw a few bits of creative driving from a, of course, Subaru. We reach the place, a nondescript building, and pick up my game. Two and 1/2 years wait for this one.

I make a faux pas. I buy two more add-ons more planets to explore, and when they show me the tax, I think it is the change for using cash and letting them keep it. I am out of state, so I do not have to pay it anyway, but they politely let it go. I felt terrible when I got the electronic receipt and saw what they were really talking about. I sent an offer by email to make amends. I reside in the no sales-tax haven of Oregon. I also never use cash, usually in Washinton, as these things sometimes happen with money.

We head to food place Beaches, the last one now, on the Columbia River. I have their fantastic house salad with chicken and hot tea, nearing committing the next faux pax of ordering an ice-cold Gin and Tonic. This would have violated the anti-nausea med restrictions and likely sent me into a breathing issue. Mariah liked the place; this was her first time and had their ribs. These were the more southern standard heavy meat ribs, which surprised her as she usually gets baby-backs that are more cooked and chewy. We shared a key lime pie, of course.

The salad was just below room temperature, but my mouth did feel funny from eating it. Likely cold food, as I already mentioned, is out. I had hot tea, which made the difference; sipping tea while eating. I often now have a glass of warm water next to me at home.

Mariah flew Air Volvo back to the Volvo Cave, home, without incident, and traffic was close to non-existent. So she headed off to see Susie, and I remained home.

Mariah spent 90 minutes or so and sent this lovely pic:

Later, I opened the box of Unsettled, showed the game to Corwin, and then laid down to read. I managed a page of rules and was then asleep. Corwin, who had no plans for Saturday, wanted to try it out. The first planet is folks facing a planet full of plan toxins, and you might have to be a fungus host to survive the planet. Corwin liked this first theme.

Michelle Vondenkamp, from Nike via Meal Train, provided dinner for us tonight; we enjoyed a Cosco colossal shepherd’s pie with good bread. Corwin got this going after cleaning out all the half-used, mostly condiment containers accumulated in the frig.

As usual, I started something to watch for dinner, the old Airport movie. It is still funny and wrong and terrible. The tobacco use and stupid jokes still make you smile.

Corwin commented on using a cane, and first I demurred, but soon the stiff knees and now stiff made it the right thing to do. So I use a cane now.

I turned off Airplane, and Corwin cleared off his working table, which is likely a bit small for the game, and I went off to reread the rules, lying down and managing another five pages. The game has twenty pages of rules and then sections for questions and conflicting rules. Finally, at 11ish, we started assembling and punching the game; it is now a used game (eBay selling unused copies for $259).

We tried to play a turn or so. I need to finish reading the rules as much of what we are doing is at the end of the rules. I usually watch a few videos too. This ran me to 1ish Sunday morning. A cough, quite bad, started, and my muscles began freezing up, making the chair uncomfortable with my back unlocking and refreezing in different positions. Quite a strange feeling, like a crashed android/robot system running my back.

Went to bed and fell asleep.

Returning to Sunday and writing, I am later than I like with this blog entry, but I did sleep for 90 minutes in the chair this morning. I also have to admit I stopped and watched First United Methodist Church in Beaverton try out their first live stream on YouTube.

Please click HERE  at 10:30 AM Sunday.

They did good, and the issues are the same I have seen on many 100+ person streams, including the licensing issues. And most important, it was not Zoom+ which is hard for many to make run and comes with so many security issues.

Thanks for reading, and I am using the cane this morning. It is hard to get started, and there are sudden moments when my responses are fighting more gravity than I am used to, and the cane helps. I remember Susie eschewing a cane and falling. I am not a world-class ice skater used to calling on hard surfaces, and this way, I would like to avoid 911 calls.

So trying to make Sunday work. All the best, and thanks for reading.

Working backward and starting with this Saturday morning, my chemo treatments require some immediate behavior changes. The steroids make sleep impossible, and I only napped a few minutes last night. I took the next dose; they infused the first dose, at 6AM, with an anti-nausea med as I was already feeling a bit off. This, of course, caused side effects stacking. Now I was nervous and sort of wired by the steroid, and the anti-nausea med caused drowsiness and dizziness. I was also cold again. I sat in the chair in the living room, not headed to bed, and actually nodded off a few times. So have had a strange first morning.

My fingers, mouth, throat, and I suspect my feet are enjoying extreme cold sensitivity. I get an eclectic shock in my finger and hands when coming into contact with anything less than body temperature. I was heating the iPhone on the blanket to use it! My winter gloves and kitchen mittens are working for me.

I have to drink tea-hot water. Room temperature bottled water is not OK.

David and Michelle (the Smiths) picked me up at the house about 9:15ish, returning to the story of Saturday night. We had pizza at their home on Baldpeak. I did not want to be home just waiting for the side effects to start, and I could not rest either. So pizza and a board game seemed a good idea.

I taught David and Michelle the top-rated Wingspan game (I described the game a few blogs again, so I will not repeat a description today). The game is easy to teach, but the play has to be monitored for new players as it is more complex than it looks and some of the symbols are less clear than they should be. Nevertheless, we managed to avoid any redos or failed turns. David and Michelle picked it up, and we played two rounds as it was past 1AM Sunday when we stopped, and David returned me to the Volvo Cave, home.

Before this, I had a few cookies, being careful not to take too much sugars as the steroids kick up sugar levels without much warning.

I rested a bit and read a lot of emails that I had missed. My arm hurt where the infusion was done, and the steroid had me distracted and unfocused. Not a good feeling.

I drove us home from Portland in Wayne’s all-electric vehicle. We had waited from 10AM to 4PM. Another patient had issues, so I was delayed a few hours. I had brought snacks and even had the nurse send some out to Wayne. The chairs did not look that comfortable for visitors, so I had him stay out in the waiting room. I also got the central seat without much space for visitors as I was a newbie.

I had one potentially serious issue. I had a drink of the water from a bottle I had been drinking all day, and my throat reacted. The cold sensitivity started, and drinking anything less than body temperature will cause a reaction that is a feeling of closing the throat. This is one of the side effects I had read about. They checked my vitals, and my O2 was good. I was OK. I put on my gloves soon, and no room temp water! Tea hot only.

The pain in my arm began about 30 minutes into the infusion, and my arm would experience sudden squeezing, but the drug continued. The nurse got an IV of saline and mixed it with the Oxaliplatin, which helped. One of the nurses suggested I could still go with a port, but this is more surgery, and I have only three more infusions to go. After that, I will see how my arm heals. I have three weeks until the next adventure.

Before this, we arrived a bit early in Portland with Wayne driving in. We did have some traffic and had to park on the top of the Legacy parking garage. Wayne brought two books. I had a bag full of snacks, my manual for chemo, a magazine, and all my pills. I was ready. They took me in about 10:30 and drew blood, and I passed. So in goes the IV and the discussion about using a port next time. Apparently, Oxaliplatin is a big hammer and is not kind to the arm veins. Still considering it. It would be more thing I would have to do.

Wayne picked me up, and we drove to Portland; I was up at 6:30 to be ready on time and write the blog.

Today’s writing is late. The side effects and tasks were many today, with the zombie effect of the anti-nausea meds really messed me up. The blog will likely be more challenging to write these coming days as my hands are cramping from the chemotherapy drugs. So I can only try to get this out now.

I started Thursday early, moving back to my early starts, at 7ish, and managed to still be rushed and spent too much time reading Internet stuff. I still delay my start getting dressed until I have taken my pills at 10AM, which makes me late. So I will have to get dressed and then take my pills.

The trip into Forest Grove using Air Volvo was without events, but I am always on my guard. Oregon drivers have sudden attacks of imaginative driving, which I did see on the way back with a motorcycle crossing all the lanes of Pacific Highway, causing me to break to avoid earning a new ornament for the front of my Volvo.

I quickly went through the entrance ritual at Forest Grove Rehab and Care Center at 3900 Pacific Highway and found Susie asleep in a wheelchair in Room 44A. Her new roommate, Tammy, said she was not surprised that she was sleepy as Susie had trouble sleeping. Something I had not heard before of Susie having sleeping issues.

Susie was happy to wake up and find me there. She wanted a tour of the place, and we spent almost an hour just circling the facility. Unfortunately, I forgot to put Susie’s mask on; Pre, the head nurse, reminded me and pointed us away from one area in the facility. And Susie was the first customer for Covid testing as we rolled up to the testing cart skipping the risky area. Apparently, Covid-19 or something else contagious was in that area now. I received an update by email later and learned a new resident has been infected, as have more staff. Susie is still OK.

After the touring, we called Leta, Susie’s mom, and did a chat on FaceTime. We next called Barb, Susie’s sister, who could only do a phone call while walking their dog, Sophia, at a local dog park. They had a friendly chat.

Parking Susie in 44A and telling her I would be back in 90 minutes, I said goodbye. I had lunch with Scott Woolfolk today. He had driven out to Forest Grove to meet me. Scott last saw me before my surgery, and now he is here to see me the day before I start chemotherapy for colon cancer. We met at the Grand Lodge and chatted about work and family stuff. It was a good break for me.

I returned to the facility, and Susie was napping in her bed now. So I let her sleep for a bit. I did call Leta back, and we did another FaceTime. Susie kept falling to sleep, but she did get some words out. I stayed until after 3PM, and Susie woke up enough to ask when I would be back. I explained I would like to miss this Friday as that is the start of my chemotherapy. I will also be back on Saturday afternoon, not in the morning, as Susie’s mother and sister are going to the opera at the movie theater (The Met Opera will be broadcasting at the movie theaters on Saturday the new break-out work, Fire Shutup In My Bones). So I will have to try to reach them in the afternoon.

Driving back was without incident, but Air Volvo and I were watchful as the return contained more creative driving from the locals. It appeared that the drivers believed the lane markers and safety were more of a suggestion than law.

At home, I was a bit tired and running later than my usual return. I took a nap and was surprised by how quickly I was asleep. Unfortunately, my plans for light housework were not going to be executed.

My meal train had Saravana Prakash covering my meal cost in GrubHub, so I ordered a fav curry, Mussamun Curry, from Ma-Now Thai. As usual, I watched the news while eating and prayed for peace. Thanks, Saravana.

I managed to get back to the housework and emptied the stuff from the bathroom remodel mostly into the trash. Most of the items from the old medicine cabinets were past-date items anyway. That got hauled out to the garbage. Corwin collected the recycling. I did find more boxes here and there he missed and made four trips to the recycling bin myself. Corwin missed a few more items and made two more trips. I also cleaned up my working area just a bit.

Tempus Fugit–time flies.

I was in bed just about 10ish after taking my pills and treating my ears. My hearing is mostly back, but the ears still fill and drain in the mornings. I was reading and daydreaming about the model I plan to build for the next for Dungeons and Dragons. The new campaign has balloons filled with swamp gas. That sounds like a fun model to build from scratch, and for $70 to buy one, I bet I can do that cheaper and better. The rigging looks fun, and I think a larger one with multiple gas bags would even be more fun. Then there is the lighting of torches. Yes, that could be fun. The excitement makes it hard to sleep at first.

Sleep comes without issues, and I sleep the night through with vivid dreams of wandering an airport that combines highway signs and gates. I am trying to get aboard a chemotherapy flight. I spent the dream moving higher and higher in the combination of airport and highway headed to my flight. I am flying economy without any upgrades, so I have to find my way. I had no luggage for this flight. I awake rushed but rested.

 

I sleep, waking a few times, until 8ish. I will be late this morning. I rush the writing and have to revise it more–you can’t rush writing. Breakfast and the morning tasks are rushed but completed. My ears are still snapping, and my hearing changes as my right ear fills and unfills. But it seems better.

I reached Forest Grove Rehab and Care Center at 3900 Pacific Highway, Room 44A at 11ish. Susie is sleepy but wakes up for me. I found her tiger on a shelf while she sleeps and put it back with her and her dog.

Susie is trying to talk more, but she tires fast and falls to sleep when trying to do anything. Part of the process, I am afraid, but sometimes it is heartbreaking for me. Susie tries to speak more, but her mouth seems not to work for her.

We call her mother to chat on FaceTime, and they have a long chat. Again, Susie can get the words out, but she is trying more, and some are clear.

Later in the day, I get a call from the hospice nurse that there is an issue, and they are working to have Susie’s mouth cleaned more often. I will also try to get some thickened water and feed that to her when I wake her. Usually, a little ice also helps in the water.

Returning to the story, we do some music videos, including the YMCA, and Susie’s hands move a bit–I do the arm movements, mostly getting them right. She sings along with 80s dance music from David Bowie and Mick Jagger, and I slide in some Anne Lenox too. We try Meatloaf, remembering we just lost him, but his videos are not really for singing along.

Note: I am beginning to think I should be a Cruise Director for 55+ folks. “YMCA,” “Let’s Dance,” and other 80s get-up and boogie music are my goto’s to start the day. Followed by my writing classes and my advanced Python class for the genuinely introverted. The evening is game night, including my painted (now) vintage Doctor Who Risk. This night closed by exploring coffee and rum-based drinks with flaming drinks are optional but recommended. Optional discounted coloscopies are available for those who keep putting them off, of course, with prep-flavors being rum, whiskey, beer, and unflavored for those who believe “what does not kill you makes you stronger.”

Returning to the story–daydreaming over…

Susie is sleepy, and I wish her goodbye with a kiss on her forehead (practicing for when I am on chemo as Susie certainly needs no exposure to more chemo).

I drive home and almost finish the KFC using the microwave to reheat it. As usual, I am watching YouTube stuff while eating. More new stuff from Nerd of the Rings on Tolkein, and I also slip over to The Broken Sword channel for even more stuff. Hobbits are covered by both in the last few weeks.

Today is a clean-up day. I need to get a few things done. I seal up the box to return the non-charging electric razor. I also pick out a lot of Susie’s clothing to send to Kat and Natasha Smith in New York City. Susie and I agreed to send some apparel that used to fit Susie or has been sitting around a long time to the Smith girls to see if they can use it (Susie’s previous figure is a close match to Kat, and some might fit the taller Natasha). If they cannot use some or all, they can use it as a credit at a legacy clothing store or donate them. I watched Disney’s Cruella a few times, and this is my reaction if you like to fashion sense reawaking.

Next is the fence. When we removed the dying trees on the back of the property line two years ago (just before the pandemic), an old and failing wooden fence was now visible. It is actually a bit charming as it still standing, graying, and uses metal fence poles that look new (zinc covering works well in the Pacific Northwest rain). But, one section has broken and is leaning and will soon expose the backyards.

I bought a few days ago a new wooden 1.5×1.5xlong to fit below the failed 2×4. I did not know then that 2×4 are actually 1.5×3, and thus the broken and rotten board is a cheap old 2×4. Being me, I thought 2×4 were actually what the specs said they were.

So I carry out the tools to the fence, drill, saw horses (nice plastic ones that are strong and light and fold-up–recommended!), new lumber, and some old wood that is only an inch thick I used to repair the garage years ago. I have 2″ and 1 5/8″ screws. I also found my cross-cut hand saw (what we called them in woodworking class in the 1970s and 1980s). I spray it with WD-40 lubricant and bring it out. I fit the splint under the rotten cross board. The old fence is nailed together (no screws), so it is very old.

I use the hand saw to cut the lumber to fit. It works but is slower than I like, and I decide I should look for a higher quality saw if I am going to use manual saws. It cut thinner wood with ease, but it may be getting dull from lack of use, or maybe I am.

Note: Later, I did order a new German-made saw. More on that when it appears.

I use my metal strips to attach the splint under the failing wood. The rot makes this unlikely to be successful. Lucky for me, the failing wood, rotted and broken, was a very cheap piece of pine with plenty of knots. These are still solid as they are full of pine resin and strong. I attach all my strips, stainless steel, to the many knots.

I then use the remains of the new board to splint the one board from the fence that has fallen. I am not going into my neighbor’s yard to fix his/her/their fence. I manage to get the board back in place. I use the 2″ nails that are just long enough to penetrate the boards on the other side and lock them in better. I used more screws to attach the new splint board to the bottom of the rotted board. I have to pull the fence back as it is bowed-out where the mainboard broke. I managed to pull it all to the splint. It will like hold until a nasty storm takes out the fence altogether, but the metal polls, a strange extravagance nowadays, will likely last until the big-one hits.

I finished and put back all the tools, the wood I did not need (thinking at first I would need a cross brace); it takes three trips. I then wash all the mud off my Air Force Ones that I forgot I was still wearing. I should have used my old pair. But, unfortunately, the perfect white that collectors love is now gone.

I then take the packages to UPS to get the clothing and failed electric razor on to their next journey.

Scott Aeschliman buys dinner for us at the house from GrubHub via Meal Train. Scott is from the Nike Core ERP group, my group, and is a specialist in extracting and conforming data for reporting and other uses, both inbound and outbound. I have known him for years, and we have worked more holidays and weekends together (data is hard work) than we should ever admit. Scott now faces a new world of streaming data which seems to have all the same problems we have already solved using legacy tools (again, data is hard work).

I watch part of the American NPR Newshour. I missed the BBC News, and I have a lamb gyro from Gyro House while watching; thanks, Scott!

I managed to read and sleep in the evening; the workout with the saw and the shoe cleaning was enough exercise to help me sleep. I nearing forgot to treat my ears and was up to almost midnight. Sleep comes easily today. Some things are done, and that helps, less to worry about.

 

Here is today’s pic of Susie so that it appears first:

Note: I should mention that The 649 and the Mexican place are strict on masking. Also, I leave if they get too busy or have customers not following the rules. I am very careful going out.

Going backward, I read the Abhorsen books by Garth Nix, Lirael and finally slept about midnight. Unfortunately, my ears are popping and clicking still, making sleeping a bit difficult. I also took a nap in the afternoon, making sleep hard to find.

Brian Middleton, manager of Java SAP development at Nike (and other things), brought over KFC for dinner. I was late and missed him, but Corwin got the food. I had got a dessert at The 649 making me late after having a terrible (and embarrassing) reflux that had me nearly rolling on the floor coughing. I was thinking that the creamy dessert would prevent a repeat and having that reflux while driving home was not something that all the techno wizardly in Air Volvo could solve!

I enjoyed the KFC while watching the BBC news summary on Oregon Public Broadcasting. Politics look different when explained from a UK perspective. The news on BBC was not dominated by the potential war in Ukraine, but that did get plenty of time. I did not know that Athens and Turkey were buried in snow. I saw familiar sites in Instanbul covered in nearly a meter of snow. Wow!

Before this, I had Mexican food across the parking lot from The 649, Evan and I opened the place at 3PM. Evan and I played two quick games of Wingspan as we both have played this before. Evan was a bit rusty as he had not played for about a year and kept trying to pay extra eggs (an easy mistake to make). Evan managed to pull ahead in the first game, and I could not find enough high-point birds (cards) to even out the score. As a result, I lost by five points. In the second game, Evan made a few mistakes while all the birds (cards) were coming to me. I had never had so much food in a game of Windspand before. I ended the second game with five pieces of food unused!

The Wingspan board game is one of the best games out there. However, it is a bit random for me. It ranks 24 out of all games on BoardGameGeek.com (Concordia ranks slightly better, which I agree with) but is one of the best themed games I play. For example, I love to read the bird names aloud when playing a card. Also, the tiny engines built into some birds and the different areas you place birds (cards) bring delight to my inner Euro gamer. This game has little player interaction except for the raiding of the birdfeeder and picked exposed cards, perfect for the introvert.

If you are more into birds or want to play a slightly tactile game (the eggs are egg-like) that has no combat and is about how you manage what nature (random) provides, this is a game for you. I strongly recommend it, but I would suggest finding someone who has a copy and learning to play from someone else. Learning on your own will be challenging, but many good videos explain the game now. Finally, I have passed, so far, on the extensions and just play the original.

As I said before, I met Evan for Mexican food after leaving Susie at the Forest Grove Rehab and Care Center at 3900 Pacific Highway, Room 44A. I did stop at the house to pick up Wingspan. My copy as wooden food items and extra purple eggs. Just a little bling.

And on the way before this, I stopped by the clinic, which is much busier today, and had the ear wick removed from my left ear, and it showed improvement. I waited about an hour. However, the actual process took no time but felt and sounded to me like a tiny octopus had been hiding inside my ear. Yikes! I could hear a bit better now (no more octopus blocking sound).

Moving to the morning, Susie was having a sleepy day. So when I was there at 11ish, running late as I slept in, she could barely open her eyes. Susie was comfortable and dressed in a clean shirt. The staff always has Susie ready for visitors by 10ish; they love her.

Susie woke up when I told her that her Aunt Joyce had sent her a tiger for the new Chinese year. Susie was born in the year of the tiger, and her aunt supplies her with tigers (including her fav slippers now, after years of use, held together with duck tape). So Susie grabbed the tiger and spent the morning holding and just looking at it and petting it.

Susie was happy to have a tiger with her and smiled. Next, we called Leta on FaceTime and Susie, and she spent some time chatting. Susie is still hard to understand but tried to get more words out. Following this, we called Susie’s Aunt Joyce in North Carolina and thanked her for the tiger.

I had to leave as I needed to get to the clinic and deal with my ears again. So it was a shortish visit. Susie was sleepy and kept telling me she needed to sleep. I told her it was OK. But she kept waking up and petting or holding the tiger. Evan called, and he also spoke to Susie for a few minutes before I left.

The morning was the same, except I slept in to help my recovery. My ears finally cleared about 1/2 through the morning rites. I managed everything, and the dizziness is mainly gone. However, I did feel it come back a few times, so I was conscientious and used the handles in the shower (it is gone today–Wednesday!).

As mentioned, I slept late as I had a few scary dreams. Mostly forgotten now, but still, I stole an extra hour.