Author: alohawild

Working backward, I was late to bed and was reading before midnight, but I was asleep by midnight and did not wake until the morning.

I have been taking my pills at 10AM and 10PM. Precision will be required when the chemotherapy starts. I am trying this week and next to learn new habits that will help keep me healthy during the three months of chemotherapy.

Before taking my pills and reading until falling asleep, I decided to finish the animated version of the Batman comic, The Long Halloween. This is a two-part film with each part more than an hour and not cheap (over $30 when buying both on my Apple). The new Bat Cave YouTube channel recommended this as background for the upcoming Batman film. Harvey Dent is one of the main focuses of the story and his transformation to Two-face. I enjoyed it, but a couple of times, it felt like a checklist of villains, but the story was complex, and I had guessed the mystery, but the reasons had escaped me. So a good mix of Batman, difficult puzzle, and a tour of villains; recommended.

I also started cleaning off my work table in the house. I am stronger now; the anemia is gone, and I have begun to put things away. Before, I was more like a battery and would run down; I needed to conserve my actions to only essential items and just stacked things on top of another (messy). Now a bit of housework and cooking is not a drain. Of course, I still need a nap to recharge, but the nap length is shorter, and the energy level after the rest is good.

The chemotherapy comes with anemia, low white blood counts, and a host of other issues. So I expect the housework will suffer, but the pandemic has taught me many strategies to reduce the work. For example, I sort the mail by the trash bin outside. Most of the mail goes directly to the trash container. No paper blob now. Extra copies of bills, usually medical, are torn up and trashed. Bills are paid online. It helps.

BTW: all utilities, mortgage, yardwork, and taxes are paid automatically. Only the cable bill and the car insurance require intervention. Medical bills are a judgment call as some bill the wrong amounts, and refunds appear weeks later.

I attended the Theology Pub now Zoom meeting, the second Thursday of the month @ 7PM by Zoom. We have met for seven years (!) and used to meet at a loud pub in Beaverton and talk while eating and drinking about serious church issues. The hardest part of the previous live format was the table was long and the noise a bit much. Being heard was thus difficult sometimes. The Zoom format is easier to be heard, and folks from Idaho and/or other states can join us, but we miss the old Racoon Lodge bar and those fine sour beers (well, maybe just I miss them).

This time we talked about being called and what that means, how it happens, and what are our experiences being called. We did compare and contrast the idea of a calling and gifts (skills if you like). The gifts enable the calling is sort of where we landed on that. Calling is something you find (or it finds you) that gives you a feeling of completion and helps you make yourself and the world better (my words). The meeting went on for just under 90 minutes, with Bob calling us to end when his glass of Grand Marnier ran out.

I finished the other half of my lunch, a Subway tuna fish sandwich, for dinner with a can of peaches. There were fresh veggies on my sub now. Again, the doc said a healthy diet and no restrictions.

I got home about 3:15ish from Forest Grove Rehab and Care Center, Room 44A. I spent multiple hours with Susie, got lunch, and came back. There was a chance that the staff there had managed to schedule a hospice nurse to come. The Legacy folks had called me in the morning and informed me that despite the whole week going by, they did not service the Forest Grove area, and I would have to start over with a new agency that I would have to find on my own. I was a bit unhappy with the Legacy folks as I pointed out that they wasted a week and that despite the fact they do not do Forest Grove, Susie was to reside home, which is not Forest Grove. Logic suggests all they had to do was drive out a few more miles for the interview, and then Susie would move back to their coverage area. That logic or exception did not change their refusal to help. They did call the Rehab nursing director, Judy, and Judy then started the paperwork there in Forest Grove with another hospice group they work with.

Judy and Pre, Susie’s head nurse, started immediately on the paperwork and process to get Susie supported by Bristol Hospice. A group that Judy and Pre know and they said are just amazing. They hoped the paperwork would get processed soon. I thus stayed late as I might get a late hospice nurse in. Did not happen, but Friday may still work.

Moving backward to before lunch, I am now getting there in Forrest Grove about 11ish as I need to take my pills with food at precisely 10AM. Susie was still sleeping but was dressed in a clean shirt and was comfortable without pain.

Susie chatted via FaceTime with her mother Leta and then with her aunts and uncles in North Carolina via FaceTime. Gene, Glenda, and Joyce were happy to see and talk to Susie.

Susie and I watched a 2001 Elton John made-for-BBC concert on YouTube. Susie softly sang along. She was tired, and I let her sleep for an hour. She was so happy that I was there when she woke, something that had not happened in a few months!

I watered her plants when I got there about 11AM, still going backward, and she was thrilled to see me. Her nurse said that Susie just lights up when I come in. I try to be there every day.

I drove there about 10:20ish, and the drive there (and back) was absent the usual jokers, and I made good time. Not sure why driving is better on Thursday, but I did pass two wrecks (who hits a bus?) on the way home. All looked like low-speed wrecks, the damage showing that folks must have turned into someone or gotten in the way.

Still moving backward on the day, the morning started at 7ish and went slow writing a blog and having breakfast later. It is nice to not have that crushing anemia and surgery-induced exhaustion suddenly slow me.

I got a note from my chemotherapy doctor explaining that I should, with only four cycles, not have to endure the loss of dexterity from nerve damage.

I was up and going about 7ish now, taking an extra 30 minutes of sleep. I was still awake at 5ish and then 6ish and fell dead asleep just in time for my iPhone to make me restart being awake again.

Wednesday started with me waking before my alarm. Sleep had come late, and the morning seemed early. But I have to get going once I am awake. So up and writing and reading and making coffee.

I have a later morning appointment with Doctor Frankhouse, the surgeon that removed the colon cancer. So no rush to see Susie. I am also trying to keep my handwritten journal.

I got the address of the RiteAid where my prescriptions were sent in error. Not sure how this pharmacy was used as it is not on my list in OHSU myChart.

I manage to dress and all of that and take my pills on time at 10AM. I have to have them with food, so I have a second donut from a box Corwin bought. Ironically, I am eating his breakfast this time.

I pack up and update the journal. I use Air Volvo nav to find the pharmacy (I was not sure where this one was) and get inside to only discover my wallet is still at the house. Back to the house and then with my wallet, I return the RiteAid a few miles away.

I am now starting to be stressed for time. After a week, I get to the pharmacy window, and the prescription is still not filled (?!). I was worried that they would have undone the filling after waiting for me so long. But, RiteAid’s pharmacy staff is just back after a Covid-19 exposure, and they are a week behind on filling prescriptions. They offer that I can wait for it, but I am out of time. So I told them I would be there on Thursday and headed out.

Note: They had a sign-up at this and my local RiteAid that they have no at-home Covid tests. Another frustration.

I drive to Portland, and the drive is fast and straightforward without the usual creative driving by our over-polite Oregon drivers. It takes no time, and I am 40 minutes early, leaving me feeling like I am part of a Doctor Who timey-thing.

I walk to the pharmacy at Legacy, and they do not have the hand and feet cream recommended for the chemotherapy coming up. I was surprised that the pregnancy tests outnumbered the skin cream count. There were no at-home Covid tests.

I return to the plan and see doc. No issues. I will need to schedule another colonoscopy after the chemotherapy (WTF is all I can say). The doc also explains that some of his fellow doctors lost their careers after undergoing the same drugs because their hands were too numb after the treatment. I will need to be careful to ensure I can still work in IT, he explained to me. I was worried about fine movements, but he explained the loss could be profound.

Note: I woke up this morning worried. I have messaged the doc about this. I have read the literature, and it is possible, and it needs to be mitigated. Interestingly, the risk seems to be related to having the hands and feet get cold.

I stop by the world’s most excellent ice cream, Salt and Straw, and get Susie ice cream (it is frozen rock hard there and will only partially melt by the time I get to Susie). I then stop by Santa Fe Taqueria and have lunch now, including lettuce and beans. I am cleared to eat a healthy diet by doc. I have an enchilada (chicken) and a cheese-filled Chili Relleno, and it is just perfect (my food last time was less excellent).

(Apple and WordPress are not getting along today, but I finally managed one pic)

I then drove the hour trip, with still no traffic on 26, but the locals on the journey into Forest Grove did not disappoint, with one driver going for creative use of lanes and seeing how slow you can go–in the left lane, of course. It was a sunny, dry day, so the excuse that it was raining could not be used today.

Surviving the comical driving without Air Volvo losing any paint, I reached the Forest Grove Rehab and Care Center, passed the entrance exam (normal temperature), and found Susie sleeping in room 44A. I had very melty ice cream for her, and she had five or so teaspoons with me, ensuring that her thrush did not reach the container. I used a cup to get some ice cream for her and then threw the cup away.

Susie was talking more; she was worried as I was so late and seemed to be a bit unhappy in bed. Later she had her head lowered, and the pillow returned to her head and looked happier then. Susan was getting out more words that were more clear. She still could not make herself understood much, which frustrated her.

I did FaceTime calls with Leta and David Smith. Susie seemed happy to see Leta and David today and spoke more and was understood more. Susie’s sister Barb was at a dog park when we called could only do voice, but Susie and Barb had a friendly chat. We could hear the barking.

I grew tired as I had a busy day and so soon packed away my stuff and the ice cream (refreezing here at the Volvo Cave) and said my goodbye. It is always hard to leave, but I need to do things at home and not get too tired.

Reaching home after discovering considerable traffic in Forest Grove and dodging school buses without issues. We have the school buses starting about 2PM.

I rest and, after getting up, order the Utterly SMOOth skin cream recommended (with Urea) by the chemotherapy pharmacist from Amazon. Urea is pee and reminds me of this movie scene.

I could make dinner with more options today, so it is homemade jambalaya (the mix is from a box) with kielbasa, ham, and even shrimp (I had purchased a bag of frozen shrimp for the holidays, and there was still some left). I add a can of Mexican-style stewed tomatoes and some corn.

It comes out good, and I watch the newest episode of The Expanse. This seems a transitional episode so, while it was good, it was not as good as I had hoped.

I also watched the newest chapter to The Book Of Boba Fett on Disney. This, too, was a bit of a transitional episode, and I thought it included ham-handed additions of new characters to the show. I was also impatient with a set-piece chase scene–the show was too good for this. A disappointment.

I went to bed, surprised by how late it was 11ish. As usual, I had trouble sleeping, but I seemed to be asleep by 1ish. I dreamed about driving with my late father, explaining to him what was happening. I remember dreaming that he was being very supportive. But, of course, it being a dream, some SciFi events were going on while I drove, and AirVolvo was transformed into a Star Wars speeder Volvo.

 

I started this morning at 6:30 and was feeling better than on Monday. Sharp pain in my incision wakes me–not the alarm clock I was hoping for. I made coffee, read emails, and prepared for the day without issue. I wrote the blog, showered, and headed out a few minutes late.

Today, I will try to go slower and not pull too much on my incisions. The pain slows and fades over the day. There are no signs of infection.

I was late as I spoke to Doctor Barlow, our primary, about Susie and my leave paperwork. I was surprised to learn that our doc was out after being exposed to Covid-19. Doc agreed and has started the plan to move Susie home under hospice. A new hospice team will be formed to support Susie. It will take a few days for this to start. A hospital bed and changes to the house (I will move to the guest bedroom) will be required. Doctor Barlow will also work on the paperwork on my leave that seems to be stalled somewhere. Our doc believes it is possible Susie will be happy at the house and getting out of a medical setting.

Another rainy day with light flooding here in Oregon. I had put gas in Air Volvo on Monday night. I like to keep at least 1/4 tank in the car, allowing me to drive anywhere in the local area and back without issue. Air Volvo uses gas and gets about 21 miles to the gallon. The next vehicle I buy will be electric, but for the moment, Air Volvo gets done what I need to get done. Gas is just under $4 here at 3.90 (remembering that we don’t have a sales tax here in Oregon, so we have an extra high state gas tax of 38 cents a gallon, with Michigan and California set even higher with sales tax, too!). The number of electric cars is causing tax revenue to sink on gas, and soon toll roads will start in the Portland area.

I reached the Forest Grove Rehab and Care Center (Susie is in room 44A) as the pharmacist from OHSU called. I spent 40 minutes on the phone talking to her about the drugs and the care I would need, mostly self-care, for my chemotherapy. I also learned that a bunch of prescriptions has been sent for me. However, I have heard nothing from my local pharmacy.

I finally head in to see Susie and pass the Covid-19 rituals with a normal temperature. Susie is in the dark and, at first, goes back to sleep. I ask her to open her eyes, and then she is happy to see me. The place is noisy, and I think she has learned to sleep through anything now.

Susie is still being treated for thrush in her mouth. Today she is tired, as usually happens after having a good day. We call Leta, her mother, using FaceTime. There both are always happy to see each other. Leta suggests we call Susie’s Aunt Joyce in North Carolina, and we manage to connect by FaceTime with Joyce. Susie and Joyce are happy to see each other and Susie manages some clear-ish words with her Aunt, surprising me.

Susie and I spent time, like yesterday, playing music videos on my Apple. Susie quietly sings along with Bowie, John Lennon (with and without Beatles), and a few others. The nurses descend with meds and soon lunch, so I say my goodbyes and remind Susie (it is unlikely she will remember) that I will be in the afternoon late on Wednesday. I have a doc appointment with the surgeon–a late follow-up.

I experience more unique, poorly skilled slow-motion and overly polite versions of “Keep-way” in cars on the way back home. It always surprises me when folks become scared when driving because it is raining (it is always raining). I return home without incident in Air Volvo.

I decided to microwave some aging potatoes that I cleaned up and heat chicken soup from a can with some extra noodles. I take the potatoes and put on sour cream, pepper, and sea salt. I then scoop soup over the potatoes, mostly noodles, and chicken with veggies. Maybe not a fav but I loved it–I was also famished. I find while healing that I have to eat more and better.

I take a 90-minute rest. I am suddenly tired. A nap refreshes me.

Back to more process, I call Sedgwick. This company runs Nike’s leave and accommodation process. I manage to wait for a human on the phone, and they can handle everything for me. My original request is still waiting for a correct response from Doctor Barlow. The customer support representative places notes in the request to recontact the doc and get it done. This request when approved uses Nike’s paid leave to care for a family member benefit. I would like to get my vacation, all used up now, back. The second request is now revised with an April return to work date. It is likely more forms will be needed to be filled out to justify the extra three months. My chemotherapy doc is ready to fill that out as required.

I had waited until three weeks out before starting to handle all of this. This is because I did not have the strength to keep all of these processes moving before. It is still a lot of stress, but I can mostly handle it.

I talked to my Nike boss, Brad Jones, and reviewed the paperwork and changes to my return to work dates. I describe the chemotherapy process, and he agrees that I should not try to return to work in such a demanding process. He offers to help in any way, as does the whole team in my department, Core ERP.

After this, it is time to read and sleep. I rest for about 90 minutes.

Off to the pharmacy, only to discover no wallet. So back home and I decide another hour rest is in order.

Off to the pharmacy and then to dinner, again, and there is still no prescription (they are sent to the wrong pharmacy, I learn later).

The Sushi Zen is nearly empty, perfect, and I find a seat at the bar on the track. I again select from the dishes flying by. Furthermore, picking a few favs and not being brave. Just things I know I like and will not bring me discomfort. I did slip in crab-stuffed mushroom caps that I had not noticed before.

I returned home and knew that I had not taken any painkillers since morning. So I sat in the chair with a heating pad and watched the next episode of The Expanse. The show did not disappoint as it focused on its best actors and properly left the lesser actors in the background. Also, the good guys are learning that a greater alien power may be rising, and they may have more problems than a civil war. An excellent episode setting up for more good ones to follow. Recommended!

I finally checked OHSU myChart and found my prescriptions are at the wrong RiteAid. I will get them on Wednesday morning. I also need to find a particular hand and feet cream. Reading the instructions, I will need some new habits. Washing my mouth with salt and baking soda, cream for hands and feet, no bare feet, no hot water, and being very watchful for rashes on hands and feet. I will try to start them before they become a must.

I read some more and fall into a troubled sleep. I woke a few times looking for Susie.

I started the day at 6:30, and I was not feeling very well. Breakfast did not settle well, and I felt a bit off all day. Later I was even starting to toss-my-cookies. This feeling slowed me down all day.

This Monday was the day I had set on the plan to start getting Susie back home. I left a message on MyChart for Susie’s doc that I wanted to get Susie home. I also called and left more messages.

Eventually, I connected with the nurse for our primary doc. After some back and forth, I landed a phone call appointment for the doc on Tuesday morning. This took hours of elapsed time over the morning and afternoon.

I also contacted Providence House Services. They informed me that they must have a new referral from our primary doctor before they can help. However, they can help with equipment, such as purchasing a hospital bed for Susie through insurance.

Returning to the narrative, I managed a light breakfast, showered and dressed, and did not experience fatigued after those steps. The drive on Monday at about 9:40ish to Forest Grove was with very light traffic but crazy drivers. I managed to brake and dodge a bit with Air Volvo, all in slow motion, avoiding colliding with overly-polite but low-skilled Oregon drivers.

I reached Susie at Forest Grove Rehab and Care Center room 44A just after 10:15ish and passed the entrance rituals, including taking my temperature. Susie was still in bed and receiving treatment for thrush in her mouth five times a day. She was tired, as often happens after a busy day like Sunday when the staff has her out of bed and eating in the common area.

I tried to explain to Susie, who seems to understand words, but can only get out a few intelligible words at a time, that I was starting to work on getting her home. I could see her eyes light up when hearing about going home. Then, Susie began to nod off again.

I called Susie’s mother, Leta, and spent some time with Leta and Susie on FaceTime. Susie was not really sleeping, so I decided to do something different today. I brought the Apple laptop. I played music videos and music for Susie.

At first, we did old rock on a YouTube channel, but it was an odd collection with Guns and Roses unplugged (!?). So I found David Bowie and Mick Jagger doing their dance video, and Susie softly sang along. Working! Faith from George Michaels and Queen followed, and Susie was happy. A Led Zepplin (Kashmir is very long) and a few more items that Susie loved followed.

Covid testing for Susie and everyone happened between songs. I left a bit around noon. The facility is trying to avoid another shutdown from Covid-19!

I stopped by Popeye’s for some fried chicken. I was hoping that would settle me. It did not make me worse. I started a journal to record taking pills and how I am feeling. I have so much to do; I need more than the blog to remember things like “did I take my 10AM meds.”

After more hours of calls and messages as described above, I had a 9AM appointment by phone with Susie (and my) doctor on Tuesday. I was so cold I was shaking a bit. A sign that I was fatigued as the house was set to 70F. I was wearing my robe over my street clothes. Off to bed and a blanket and a book for the later afternoon. I was asleep when my boss at the shoe company, Brad Jones, asked me about my leave requests. I will look into that and talk to him on Tuesday about that. I was just too uncomfortable and sleeping to deal with it on Monday.

Mariah texted me later, and I had an early dinner with her. After waking and driving Air Volvo to the Golden Valley Brewery, I had a beer, a small one, and a pulled pork sandwich. It did not settle well. I was happy to see the GVB was still careful with masks and cleaning. The guests were also following the rules.

I discussed with Mariah that I would not be leaving the house for about three months for social items once the chemotherapy started. A reduced immune system and all my other challenges clearly make leaving the house a risk. I still plan to visit Susie, but that would be the best (with nursing care) if I could get her home.

I call into a church meeting, the only one I have made in a week. This is the group that works on Social Justice in Action for the church. It was nice to chat with the church folks.

Returning home, I nearly get to enjoy dinner in reverse. Back to bed to reading and sleeping. I use an anti-acid, and the problem settles down.

I am freezing and just slow down. Better.

I read The March Fallen (The Gereon Rath Mysteries Book 5). This is a set of crime novels translated to English and set in Germany of the 1930s, focusing on the police detective Gereon Rath. He is a slowly corrupting officer in the Prussian-controlled Berlin of the 1930s. In this story, the Reichstag burns down, and the Nazi take-over is destroying the Prussian love of fairness and order. The books are darker than most mysteries-crime that I love and not my first choice, but I have finished most series I enjoy and thus have returned to 1930s Berlin. This one is good if you like dark and disturbed, well-meaning detectives. 

I managed to finally sleep about midnight, which will make Tuesday start hard at 6ish.

The story working backward ends with me reading and falling asleep just after midnight. I sleep most of the night, getting up just once.

Note: I am having some issues with WordPress so I thought it best to just publish this before I break it again.

Before this, Richard and Shana brought over a homemade chicken pot pie with an ‘M’ on it, and Corwin and I finished it off. We had it for dinner and then for the second dinner. I find while healing that I get a lot more hungry than before. The food was terrific.

We had come from Cory’s house and my first Dungeons and Dragons game since this summer. I had missed a few games when stranded in New York City, and then we had a delay when Matt, our DM, was exposed to Covid. I was tired but not fatigued after the game, an improvement.

We are at the conclusion of a year’s campaign of premade material called DESCENT INTO AVERNUS. Matt has also bought the premium support product from Beadle and Grim and even added it. Thus we have had premade maps, cards, pictures of the primary good and bad guys, and figures to fit much of the storyline. We have reached the story’s ending, no spoilers here, and have just one session to go. After that, Matt has already planned the next 5e game, a magical carnival, and all the Beadle and Grim add-ons.

In the game on Sunday, my little gnome wizard did cast a spell to build a wall of force to split up the bad guys into two sets. This allowed us to crush each group instead of facing literally a pile of bad guys. Seldom does a wizard in 5e use every last spell in a single battle; I did. It was good that I showed up at this game session!

Before driving Corwin and me in Air Volvo to Cory’s, I was at the house for most of the afternoon. I tried to take it very slow and rest a bit. I baked the dish for early dinner from Richard and Shana. I let it cool down on the deck after the first dinner. Before that, I just read and took a nap. I was not fatigued, but I still could overdo it and start coughing again.

Lunch, still going backward, was with Mariah at the Black Dog in Forest Grove. I had a beer and a chicken sandwich without any dreaded fresh veggies. Mac and cheese being my colon-approved side item. Mariah and I chatted about housing; Mariah is headed to homeownership and her first home loan. I also outlined my new medical experiences starting 28Jan2022, chemotherapy.

Note: My expected side-effect does not include hair loss but could cause numbness in fingers and toes. Losing my fine hand movements would not be acceptable, so I will work with the docs and nurses to prevent that. I also plan to paint and build models during the long three months to ensure that my fine movements still work. Not sure it will be possible, but I will try to use my hands during the adventure of cancer treatment.

Before lunch, I managed to get out to the Forest Grove Rehab and Care Center and found Susie’s bed empty in room 44A. Susie was instead sitting up in the common area by the nurses’ station.

Sunday Susie was out of her bed, watching TV, and sitting by the sliding glass door enjoying the unusual sunny Oregon winter day. The frost was still melting on the roofs. She was also being treated for thrush in her mouth and was feeling a bit better.

I managed to connect with Susie’s mother for a FaceTime call. Leta was happy to see Susie up and getting treatment. Susie understands I will begin the process on Monday to bring her home. I have to get her primary doc to help and the insurance company to tell us what is what. It will take a while.

Before spending time with Susie, I drove Air Volvo to Forest Grove. I did not feel the exhaustion and pain in my incisions this time like the previous times. Since I also showered, dressed, emailed, and wrote the blog, this was quite an improvement. Often I could take a nap by the time I am ready. I still kept my stay with Susie to 90 minutes to ensure I would not suddenly get tired and not be able to drive.

The morning started with me sleeping in just a bit past 7ish. I had slept well.