Blog

Starting with my current status this Tuesday morning. I have, as I planned, slept most of the morning–Day 5 has no steroids. I could not fall asleep until after 2ish as I had taken naps in the afternoon. I was not feeling right on Monday evening. I then was up all night putting back the water I drank. I am not sure how I could have drunk that much water, but I did get up every two hours until 9:30 this morning. So I am a bit tired, but I feel more like myself. Also, all the pain is gone, and there are no breathing issues. No need for a cane.

Returning to yesterday, Monday, I was up with only a few hours of sleep again to start at 6ish. I took the steroids and the anti-nausea meds, and I still had the bees running through my blood from the steroids. Some exhaustion was starting as the clocks on the walls were running too fast still for me. I managed to write most of the blog in the morning, but I was slowed down by the muscles in my hands not quite following the patterns I expected. I am hoping this will not get worse.

I threw on some clothes and drove Corwin to work at 11ish. I managed without issue, returned to the house, dressed, and got ready. I heated up Michelle Vondencamp’s soup for lunch, published the blog, and headed to see Susie at the Forest Grove Rehab and Care Center at 3900 Pacific Highway, Room 44A.

Note: My German-made saw came today (Monday). I have no actual plans to use it soon, but my existing saw was not up to my standards. If you will use a handsaw then invest in a good one. It makes it all worth it. It is also more fun to feel the wood than to hear an electric saw. Also, the first aid for a mishap with the handsaw is much less than an electric one!

Returning to the story, I passed the entrance requirements and put on gloves. I am full of chemo and should not share it with anyone. Susie was having a good day; she was up previously and watched TV and chatted with the nurses. The mouth issues are gone, and Susie’s voice and speaking are better. A wonderful surprise.

We did a few FaceTimes with mom Guild, Leta, and David Smith. Susie was much more animated for the calls and managed a few sentences. I, on the other hand, was fading fast. So it was a short visit, but one to treasure.

After this, the exhaustion hit hard. My stomach was also not quite right; I suspect I have been pouring in the water while writing and doing other tasks. I often do not notice when I am doing tasks.

Linda Wild, my sister, delivered some Mexican-styled food for me, and we ordered a bit more from Corwin’s fav place. It was too much, but I had to eat a second dinner at 10, so this worked. Martha Sayles GrubHub card handled that purchase.

I spent the evening sleeping poorly and then chatting with Corwin about my thoughts that are really a sermon I was thinking about now, seeing that I have some contemplation hours available (or forced on me). I kind of mix the story of the 40-days in the wilderness, the Passion, and MLK’s last speech remembering MLK saying “I have heard” in his Mountaintop speech. Whether I will ever give the sermon is less interesting than the exercise of being able, still able, to think clearly. Poor Corwin got the first version.

I had that on my mind when trying to sleep, which undoubtedly prevented my sleep as I had given into the steroids, just buzzing like a bee. At 2ish, I got up and did some looking at the Internet. Enjoying the latest Trump news; he is always good for WTF and OMG moments no matter what side you are on.

I finally slept, waking every two hours to lighten the water content of my body. It was a pleasure to not wake up and start at 6AM.

 

 

As before, dear reader, I will cover my status this Monday morning. I managed to get some sleep as getting up at 6AM to take the steroids is working (I am also finally spelling “steroids” correctly instead of having Grammarly correct it every time). So, yes, all those perfect Oxford commas are not my work, but Grammarly following along. I feel better today, and the cane is less needed. Also, the winds came, and the Stagnate Air warning was gone, so my morning was not full of sinus and breathing issues. So better start this early morning. But, the extreme cold sensitivity is there; my hands are stiff, and my elbows hurt now. But, better start this morning.

Returning to the blog for Sunday, my hands shake slightly, and the cane is needed to move safely. I oversleep somewhat, and 6 is more like 6:30ish.

I am not for pillboxes and get out the bags of pills, now two different Ziplock bags, one for chemo-related and the other for daily pills, and find the required meds, reread the labels, and take the steroids and the anti-nausea drugs. I also grabbed an allergy med from the cupboard. The drug is over the counter, and that too has a drowsiness warning.

I managed to write more blogs this Sunday morning, but the coughing and sneezing and sudden tired feeling overwhelmed me in an hour, and I stopped. The chairs in the living room are not recliners, but it does not matter as sleep comes; the electric blanket (thanks to Aunt Kathy and Uncle Martin in Michigan) and just sitting there, and I am out for nearly two hours. I awake just in time for church.

This is our first streaming service. It is made more remarkable as thieves raided all the equipment last month (definitely a Grinch move) and then came back for seconds and grabbed the replacements. Also, I have heard rumors that many churches have been “Grinch-ed” last month. The church is now using its limited dollars to install security cameras and use active security people.

The streaming is good. The transitions were weak, and the use of stock video failed, but the sound was good, not consistent volumes, but that is easily managed by the viewer, and the video quality is perfect. All of this is on a YouTube link owned by the church. Not Zoom+ (thanks for not going that way), but real streaming. The multiple camera changes got better, the focus perfect, and the colors good. The music is not mixed well, but it was solid with one mic failing but quickly covered. Harold’s playing was clearly in the background and at about the right level. It will only improve with time, an excellent start.

The beginning of the sermon was lost to a sound issue, but this did resolve, and Andrew’s speech was good, well-spoken, and on message. Dondrea having a copy of the text for the lost stock video, saved the transitions. Overall a better effort than I have seen from most churches with Zoom+ that suffer worse focus and conductivity issues.

After that finished, next came lunch and Charlotte Jackson’s Clam Chowder that already had been lunch for me early in the week. I managed to get it into a large pot, and we cooked it all, and over the next few hours, we made it disappear. Also, the chocolate pudding pie she sent with it was consumed; chocolate is always welcome. I had to be careful with the cold dessert and ate one piece slowly with hot water.

The blog was seriously delayed now. Next, my meeting group for church, about five or six of us, covered prayer concerns and discussed the sermon at 1:30. They were happy to see me, even still in my messy hair and robe, carefully closed, and this did work as nobody had conductivity issues, but we did have the constant talking with the mute on issue. It was a lovely time, and since I watched the live sermon as I mentioned above (I just cannot manage a speech without visual clues that are most online sermons now), I could even reply back to the questions on the sermon.

I manage to find focus now to finish the blog. I noticed a slight change in tone towards the end of yesterday’s blog, but that could not be corrected without deleting the last writing or rewriting. Not something one should do on a blog; change in tone is just some of the risk of blogging. I see this happen to my friend Violet Blue, an influential blogger and published writer. She experienced rewrites in her weekly blog that kept her up all night trying to get her blogs to reach that incredible tight writing that I dream of someday producing.

I notice time is running faster than expected; I am slower than usual. I like to get so much done every day; this is hard for me. However, the combination of sleep loss and mixing downer (allergy and anti-nausea meds) with steroids impact my thinking. As a result, my focus bounces, and I am inefficient in my time use and becoming a bit single-threaded. Moving to Nike IT speech, I will have to accept this risk, I think (a wave to my PII friends at Nike). The strict following of my medical plan can be mapped to our planning process for a “train” of development at Nike, and the Meal Train did come from Nike IT!

Returning to the story, I finally got the blog done and ignored the tone issues, as I said.

Dressing and getting prepared to see Susie is late but goes on without new issues. I often call Kate when I have unexperienced side effects, nothing new today. My boss, Brad Jones, at Nike will be dropping off dinner, but I will not be there to receive it. It will be set outside, and that will be perfect as we will just miss him by 30 minutes.

My hands are now shaking too much to safety shave. The beard is starting, hmm.

Corwin comes for the trip, which is good as there is someone else to chat with. I focus primarily on health and care issues. I then switch into a cruise director moment with “YMCA” videos and other things to get Susie moving a bit. Corwin shared some Viking-style playlist with Susie (!) that she seemed to like. I am using the cane now, and it is hard going for me to drive, take on all the care again, and then drive home. A short visit.

I check with the nurses who are just as interested in my health as Susie’s now. I cover my side-effects and plans for the next few days and the whole schedule. Susie is having trouble sleeping and has mixed up her days and nights. Terry, her roommate, even called the nurse for Susie last night. She does not mind when Susie cannot find her red button. It is right by her hand. So something to watch and consider.

I asked the nurses to help Susie by putting on the Olympics on the TV. This usually keeps her going. So they put it in her chart.

I drive home, leaving in the near dark, now gray, rainy evening. I try to not drive in this as the darkness makes the leaving even harder. But, I managed to get home with only once Corwin having reminded me my blinker was still on.

Corwin reheats that meal brought by Brad Jones from Nike IT. And the Mac and Cheese with Ham and Broccoli is a good meal. I took a rest between driving and dinner and likely slept. I am unsure, but time advanced on me unexpectedly.

I watched how to play videos for the Unsettled board game and one review. Corwin is politely letting me dilly dally on getting back to the game. The how-to footage is longish but nerd-friendly (i.e., pop-in content to make the video not be a mind-numbing monologue). Moving to the short review, also on YouTube did cover that the game is good and the manual is average at best–my suspicion that reading the manual was making my understanding worse was confirmed.

One last thing to do this night, I ordered miniature ropes, anchors, and other ship model parts from my fav Czech supplier. While not cheap and shipping is an unkind addition, the quality is unapproachable, and the responses are clear. Transactions are complex as the part are well complex and require multiple emails after using a cart and paying only postage at first. Here you can find cloth sails for tiny models that come with, ahem, plastic sails. If you need this kind of crazy, it is a fun site: HisModel.com. Select English and US dollars and prepare for poor editing of values (commas are properly Euro even in the USA currency). This is where your mind can take you from a 100-hour build to twice that and giggle as you replace those tired plastic kit cannons with shiny metal ones. And discover that tying the rigging for each cannon on a 100-gun HMS Victory will improve your skills at connecting tiny ropes if you can avoid going insane.

I already have all the parts for my 1/100 (big) HMS Victory kit (yes, 100 guns) that is plastic. I have a wood deck veneer for the details not painted. Of course, I have the sails and metal guns already purchased. I also have other replacement and etched brass parts from a German site that sells upgrades for existing plastic kits. My 300+ hours build is waiting for life to allow me the time investment for this nearly impossible quest. Smaller kits and figure painting also slip in as these projects can finish within life’s current timings. Someday!

Note: there are build logs and videos on this crazy ship model. So you are never alone when planning this build. Also, nobody is using the new salmon colors that have been recently discovered as the possible actual color of HMS Victory in 1803. It is bright yellow for everyone. Bah science, nobody is going to fight the French in pink ships, even if they did. Not on my gaming table or walls.

With dreams of using my hands again to do some long-term builds, I fall asleep and wake only a few times.

A late update: Corwin did make Calabrian Beef and Gnocchi for second dinner. I had ordered Blue Apron before all the Nike folks started on the meal train and Corwin wanted to cook anyway. So he did a great late dinner that I had some for my 10PM pills.

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.