Author: alohawild

The morning started late as I surprisingly slept in late to 9:40ish. I had to rush a bit to get my pills taken with food at 10. I also started writing the blog late as I went slow for a bit. The ants found my donuts, and this required a response.

It is day 8 in cycle 2 of chemotherapy with two more cycles to go. The extreme cold sensitivity and the sleeping issues are still going. Again, this matches my previous experiences, but the side effects are more intense. I imagine cycle 3 will be uncomfortable, and I am steeling myself for that.

My hand is still bruised, and I am using painkillers for it. However, it is slowly resolving, and I will need to be more careful in cycles 3 and 4 not to damage my hand with the shock of using a cane.

It is still cold and sunny in Oregon. My allergies are harsh, and I need to use my inhaler to not feel like I am drowning. I need warmer and rainy days, and Friday has us return to our usual damp patterns.

I am a bit late for it, but one of my fav game makers is streaming at noonish. The team from Orange Nebula, just across the river in Washington State, is taking questions. This team produced the new Unsettled board game and, still a fav, Vindication a few years ago. They use Kickstarter to publish games. I ask a hard question on the stream, and Marc, the head of the group, remembers me and thanks me for the profound question. It was nice to be remembered kindly, and they even waved to me. My question asked them if they had to give up some game designing and become logistic experts. Marc’s and the group’s answer was yes; it has been harsh that now they have to find the passion for game design to make it thru the plain work part of the job.

I enjoy the stream while making lunch, Mac & Cheese from a box. I eat the whole box. I am still losing weight, and I find I can eat and still be hungry.

It looks like Orange Nebula is going full-out on creativity for Unsettled. Marc leaves a kind note to me on their Facebook page. I am looking forward to the new add-ons (planets) for the game; I have signed up for the latest Kickstarter.

I am tired again. I do manage to shower and dress. Without any issues, Air Volvo reaches the Forest Grove Rehab and Care Center at 3900 Pacific Highway, Room 44A.

Today Susie is still in bed. This is because I am between lunch and dinner, and it is my experience that Susie usually gets a nap about this time. Susie looks tired but excited to have me there. We do the FaceTime process with her mother, Leta, and her sister, Barb, also answers. Susie starts to get tired, and soon I am headed back.

Susie asks to come home today, and I have to tell her to wait. It is always heartbreaking to answer that question, but I can see she is tired of the bed and the same days happening repeatedly. So how do I find the strength to do Cycle 3? It is the hope I have to bring Susie home after I am well enough to help care for her that makes it all worth it.

I read and sleep. I order, using the cards from GrubHub, some Chinese food. I eat that while watching the BBC News, and it is so sad to see the war. I read and then sleep again. This will mess with my sleep in the evening, and I do not really sleep through the night. I take the chemo pills and see that the bottle is more than halfway gone. I also received Cycle 3 pills today.

Again, thanks for the GrubHub cards, as they really help. I cannot predict when I will suddenly be exhausted. The cards let me save a bit of energy.

Sorry if it seems that today’s story is more an outline. The day seemed that way to me too. It was nice to reconnect to Orange Nebula on Thursday.

I was having trouble sleeping in the early morning. The night was cold, and some of the cold, as happens, had leaked into the house. I was having trouble breathing. This is the worst of the side effects, and I was up at 5ish getting it under control.

I was up and dressed very early, by 8ish, and warm enough with the heat turned on higher. I had a work meeting. I had arranged with Kate and Ryan to attend the planning meeting at 9ish. It was nice to see many folks from my department at Nike. I told them how things were going and thanked everyone for their help. I think everyone was happy to see me, and it was nice to be part of the team for a few minutes again.

Dressed and warmer now, I headed outside. The mask, a KN95, is needed before I go out to prevent a terrible cold reaction. I get the Air Volvo warm and drive-thru and have a guilty pleasure of a Carl’s Jr. Western Burger; it is very bad and so good.

Air Volvo and I drive in the afternoon Wednesday traffic to Forest Grove without incident. I am cold but not freezing in the car. I have Susie’s Thank You plaque from Oregon Sports to show her.

I reach Forest Grove Rehab and Care Center at 3900 Pacific Highway around 1ish, and Susie is there finishing her lunch. Susie is out by the nurse station and not in her room, 44A. I am freezing a bit, and the fatigue is coming on fast.

I managed to give Susie the thank you plaque, and the nurses cheered.

Susie served as a judge for years in Oregon and the Pacific Northwest and became a Silver Judge before retiring. I have spent many mornings with her, very early, driving Susie to test judging all over the area. It was our honor to support skating in Oregon.

I also shared a photo of Susie competing in 2008 skating to These Boots are For Walking.

I was home soon without any avoidance alarms going off from Air Volvo.

Of course, the war started now in Ukraine as the sun rose there in Europe. My desire for years has been to spend time in Odessa on the Black Sea; I wanted to stop by Istanbul and then pop over for a few days in Ukraine for my next big trip. According to news reports, the city was taken by an assault that morning.

I wanted to stay in Odessa, see the famous stairs, and just enjoy the Black Sea. I am deeply saddened by the war.

I was feeling better, and Mariah met me at the Golden Valley Brewery, which soon was packed, and overly so, and thus may leave my list of safe places to eat. I ate all the meatloaf and felt even better–Day 7 is usually when the chemo side-effects begin to fade. Corwin stayed behind as he wanted to cook the Blue Apron package. He enjoys the two-person meals I am having shipped and learning how to prepare them. I did this before we had the meal train and as a way for Cowin to help. I had the leftovers at 10ish with my pills, which must be taken with food, and it was, even cold, excellent.

Corwin cleans the kitchen, but the ants invade again. So I have committed insecticide today.

I tried to relax by reading and watching a movie. I saw that the new Kingsman movie was out on cable. Strangely, they could make a movie this bad. When the movie reached a new low of rewriting history and poor acting, it then did find yet another new low. My best-worst movie is Battleship (sometimes rated as low as 15%), and it is hard to imagine something worse than that; Kingsman is far worse. Don’t even start it, “ye ‘r ‘arn’d!”

I have received a copy of the game from Decisions Game on Putin attacking the west. It is an interesting interpretation of the world in 2018, when the magazine Modern War was released with the game, and sets interesting goals. In this version, Putin goes to “run-the-table” and plans to take Ukraine and the Baltic states. NATO is involved, and the battle is set as a month for Putin to reach his objectives. Interestingly, NATO can mitigate its loss of a Western city by taking a Russian city. The rules contain no nuclear options, but the game designer covers this and suggests the players can easily invent rules for that, as needed.

A distressingly good piece of work from Decision Games.

I managed to sleep after a bit, reading more SciFi and hoping the nightmare of the war would be better in the morning. I slept late until 9:30, but the extra sleep did not make the conflict disappear.

 

Some of the side effects are worse on Day 6. I was also surprised by the fatigue and finding myself dizzy. Next, I was hoping the extreme cold sensitivity would fade, but instead–like last time–it has pulsed and is worse in some ways. My legs, arms, and face burn with the extreme cold of 68F that the house slips into at night. My right hand is still very painful as it seems to have been badly bruised by the cane use and still needs painkillers.

On Tuesday I managed to sleep into the morning and get going about 9ish. I am challenged to sit down quickly as I get dizzy with exhaustion. Not something that I had experienced before. I am moving from chair, to chair, and then to bed. Shower and use of the kitchen would be unwise. So it is a PJ day and I call to let Susie know at the Forest Grove Rehab and Care Center, Room 44A, located at 3900 Pacific Highway, that I will be staying home. The nurse Sarah gets my call and lets me know Susie is having a good day and will let her know I can’t make it over there today.

Despite thinking I would do no kitchen work, I do manage to poach two eggs with toast, a fav of mine.

The cold issue continues to worsen and breathing issues are next. Scary and caused by inhaling the air under 70F, but not unexpected. More sitting and resting. It is the worse of all the side effects and so scary I have not included it before in the blog. It can begin to make me believe that I cannot breathe as my body overreacts to the cold and suddenly makes it feel like I am short of air. I drink warm water and coffee to stop this. Thusly, I have lots of stops at night. To drown in the air is a hard feeling and one of my worst nightmares, so it is even hard to write about.

I note this as I was having this issue this Wednesday morning making writing hard.

Aside: In the manual for this experience–yes, there is a manual–the side effect is described to be so convincing that nurses put an O2 monitor on you when this happens so that they can show you and themselves that it will pass and that you are actually breathing OK.

I am just exhausted and just start to go with it. I order the same lunch from GrubHub (thank you all who have sent me GrubHub cards as this is really helping) and watch TV while eating. I have an electric blanket on max and the house 70F and my face still burns with cold.

I am returning to my fav of Bloomberg for my news. I used to have three screens up when working from home, my Apple on Bloomberg, sound off, and my Nike laptop on current work, and Nike email on yet another screen. I like money news as it has a unique spin, not political. Tuesday, most of the news was the changes that events in Ukraine were having on the Fed decisions and gas prices. So today, I just rest and watch.

Rev. Anne Weld-Martin calls me, and she gets to see the full Mad Scientist look; I was asleep when she called in my bed, as she brings us all together on FaceTime. Susie is there with Anne, and we get to chat for a few minutes. It was wonderful that Rev. Weld-Martin got to see Susie today.

More rest and Bloomberg. I know how to handle this. I sleep a bit. I watch a bit. I do something on my laptop. I continue this rotation as I know it works for me.

Corwin makes a wonderful dinner from scratch, with me growling at him (and I apologize for that). He continues to follow the new guidelines and is trying to be less messy and bring some order to the chaos that he has been living in.

I speak to Susie’s hospice nurse (Susie has a lot of nurses now), and Paul is happy with her recovery and is also hopeful that Susie may graduate from hospice. Susie’s nurse visited her on Tuesday. So a good day for visitors for Susie. Even with me stuck in the house, Susie is getting care.

I switch books as I need more entertainment and start to reread The Interdependency series by John Scalzi as a distraction. It is a brain-cookie SciFi book, but I love Space Opera and would recommend it for SciFi lovers. I will return to the book Americana soon, just needed some entertainment at night. I love Scalzi’s characters in the story.

I managed to sleep most of the night, but froze this Wednesday in the 67F coolness and was up at 5:30. I watched the opening of USA markets on Bloomberg under a hot electric blanket sitting up drinking warm coffee. I am a bit better today.

 

Day 5 of the current chemotherapy cycle is always interesting. The steroids are over, and the infusion is now days away, so some changes will happen. I managed to sleep more, even with me sleeping away most of the previous day. I started about 8:45ish and made steel-cut oat oatmeal from scratch. This is boiling water and mixing it. No great effort and is fresh. I add brown sugar, walnuts, and butter to the finished product (made with a pinch of iodized salt).

I manage to write the blog and to take all the pills. It is hard going as the extreme cold sensitivity is still in place, but the cane is unneeded, and I am steady and walking safely in the house. However, the fatigue will not let loose. The clock is running the normal speed, so chemo-head is gone–if it was ever there. It is just hard to do anything as I am tired.

I seldom order lunch from GrubHub, but I want to save what energy I have left to reach Susie today. I am determined to see her today. So it is a snack version of Wild Buffalo Winds boneless wings. That works, and I am feeling better after having added some Asian Zing sauce to my day. Funny, but just a little of something spicy can really get you going.

Shower and careful attention to detail is done. It is hard going still. I manage to get into the car, learning that my face still freezes without a mask. So, re-do, back into the house, KN95 on, and then step outside. Works!

Susie loves daffodils, and I planted one for her in the center of our flowers which will stand out as the roses will be cut back. It bloomed and reminded us of all of the possibilities yet come.

I have to admit I was nearly falling asleep when Susie had the call on my phone with her mother, Leta. Without incident, I managed to reach the Forest Grove Rehab and Care Center, Room 44A, found at 3900 Pacific Highway. I managed the entry rituals without issues. I was just now fatigued. The visit was short and likely less than the travel time, but it was the goal for the day.

I managed to get home without incident.

Dinner was lamb stew from GrubHub. Again, thanks to Nike IT folks for all the cards for GrubHub. I am using them as I am so tired.

I spoke to the social worker for Susie; the hospice process came with lots of help, and she said she was happy to finally meet Susie. They had a friendly chat. The social worker could not enter earlier as the facility had Covid-19 cases. Yes, we have been running that risk every day too.

I enjoyed the end of the season of Reacher on Prime today (the ending was a bit predictable from this kind of storyline but oddly satisfying). I thought it started better, but I was still happy with the finish.

I finally slept, and while waking a few times, I managed a more regular sleep. Oddly, I am more tired today than I expected. Exhausted. So I will be careful.

Prayers go out for peace.

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.