March 12

Dad and I are sitting in the kitchen, each of us plugging away on our respective to-do’s. Despite the disappointment, we’re moving onwards. The last few days have been pretty peaceful, though dad has been strikingly exhausted. Monday, he slept virtually all day and night. He ambled around for his usual coffee fix and some food, but otherwise kept to his sun room perch. 

Despite his exhaustion, dad has finished a 1,600 page History of Ukraine this week. He started the tomb about two weeks ago, and finished the dense history Monday. In our conversation of it, I asked him how it was. “Wouldn’t recommend it” was all he had to say about it. It takes unbelievable willpower (or maybe an affinity for suffering) to get through this history. He’s moved on to Max Weber today, reading one of three volumes of Economy and Society. Book club possibility? Dad plans to finish this next week, so start reading. 

Dad’s interest in dense-at-it’s-best works of art stretches far beyond reading. Lately he’s had a new interest in watching films – and not just Citizen Kane sorts of films (and by that I mean well-regarded and standing the test of time). Dad’s been seeking out the obscure films from the 1960s that even his most patient friends cannot bear to sit through. Clark Brannin, one of dad’s best friends from his time at Tulane, was invited to watch a movie with dad one afternoon while he was in town visiting. According to Clark, the movie was good for putting you to sleep, but little else. 

History of Ukraine, Dust and Ashes (a black and white film from 1950 of Poland on the final day of WW2), and the five-CD set of that microtonal fellow are a few examples of dad’s ever-great, ever-weirder joie de vivre. 

Mom and dad went to Half Moon Bay today for a peaceful visit to the beach and a doze along the coast. Activities have changed from impulsive shopping to more subdued and relaxed ways of passing the time. This is likely due to the lowered dose of steroid. Mom mentioned that dad remained pretty alert today, and didn’t feel sleepy until the early afternoon. 

Dad stayed up for most of the morning and early afternoon today, and he and I spent some time together in the kitchen for his afternoon meal. Despite my efforts to plan events for the day, dad will often decide he wants to lay low and stay quiet during the times we had reserved to be together. This was frustrating at first, but lately I’ve welcomed the time spent alongside him. I’ve found that he doesn’t always want to talk about what’s going on, but would rather just sit with you in your company. If he wants to bring something up, you’re there, but there’s no expectation of conversation for either of us. It’s hard to describe the pleasure in these low key interactions – a slow stream of insights and ideas, weird questions about readings, a vocabulary word here or there… it all flows, and often leads to more substantive exchanges. 

Dad has his post-radiation MRI tomorrow afternoon. The MRI will give some idea of dad’s tumors. However, the results are preliminary as there’s a lot of inflammation and cell death that, as viewed from the MRI has identical characteristics to the tumor growths. In other words, the effects of radiation and chemo look basically the same as a tumor at this stage in dad’s treatment, and it’s hard to determine from the MRI how the tumor is responding. According to Dr. Schiffner, the MRI’s can tell you one thing, while the living and breathing patient can give you a totally different impression. So, we take this MRI with a grain of salt. 

Mom and I are grappling with alternative treatment options, and will meet with Dr. Schiffner on Friday to discuss the next steps. Meanwhile, the both of us are savoring the sweet, low-energy interactions from dad. I feel grateful for the peace following the disappointment and the sadness. 

With love and thanks,

Mikaela

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March 5

In the game of “us” versus “today”, today won. 

Dad’s oncologist, Dr. Colocci referred us to a vaccine trial at Stanford. A phase 3 clinical trial based at Stanford is a best case scenario for us, and we headed into the hospital today to begin on the enrollment process. 

We went into Stanford around 9am. We met with Dr. Reena Thomas and Dr. Piia Thomas (no relation), and went over many of the same history questions that we’ve discussed with countless doctors: when did you realize something was wrong? what symptoms did you experience leading up to your prognosis? what medicine are you on? how do you feel? are you nauseous? headaches? You get the idea. We discussed a lot of the concerns about dad’s current state, such as his continued dependence on the high dose of steroid. After about two hours of this, two other people joined us in the small room to discuss dad’s possible participation in the trial. 

Due to the aggressive nature of GBM, the biological treatment (chemotherapy) follows a very specific trajectory: after six weeks of chemo everyday, dad takes five days of chemo pills with three weeks off, then five pills of chemo and three weeks off. Dad is off of chemo for the next three weeks. We learned that, were dad to participate in the Stanford trial, we would have to move very, very swiftly. They told us repeatedly that we shouldn’t even get our hopes up that we will be able to participate, as they have to run tests on his pathology (the tumor) that is being stored at Stanford since dad’s surgery. Basically, we have to have everything in order (tests on biopsy, consent forms, an MRI taken immediately before the trial would begin, oh and also dad has to be down to 2mg of steroid by Monday). If one single thing doesn’t follow through, this means we cannot participate in the trial. Granted, the first step is being permitted to participate, as in all papers are in and tests run and returned in time. The second step to receiving the vaccine is that dad’s tumor presents the necessary protein / mutation (which would be determined in the pathology report). About 30% of GBM patients present this mutation.

All of this has to be determined before Wednesday. Let’s say this happens (best case, if not overly optimistic scenario). Were dad to be one of the 30%, he would then enter into the randomized sample (n=400) and would be placed into either an experimental or control group. Only 50% of these participants are injected with the vaccine. 

We understood the terms and conditions, and dad went ahead and signed the consent form. Dad was handed a loaded binder of information about GBM, and we then went through the closing remarks with Dr. R Thomas. Around 12pm we headed out of the hospital. I had no idea this appointment would have gone so long. If I had, I would have brought along some fortification.

Leaving Stanford for this morning appointment felt just as treacherous and all-consuming as it was to be discharged from the hospital in mid-January. Not quite as bad, but the place really knows how to suck out all your energy. 

After greeting his good friend, Clark Brannin, Dad took a nap. 

It wasn’t long before I got a call from the Stanford trial coordinator, who informed me that the pathology (necessary to determine whether or not dad has the mutation) is in fact at Duke. Just like that, this rules out dad’s chances of participation in the vaccine trial at Stanford. 

Reflecting on this, I realize how invested I was in this clinical trial. Staying so focused and hopeful for this “next step” functioned to delay any of the tumor’s inevitable recurrence. We’ll speak with Dr. Colocci about other options, but at the moment I feel my spirits hollowed.

March 1

As of Thursday, Dad has wrapped up radiation therapy. He strolled out of PAMF with Danny, and the two of them headed out for a long jaunt around the Bay Area. Between 10am and 5pm, Dad managed to work for a couple of hours, pick up some new jeans at Hugo Boss, select a gourmet milk frother, as well as work out and shower at PAC. He was pretty exhausted by the time he got home, but this was a very full day of errands for dad (and Danny). 

Robbie and I got home from the city around the same time, and the three of us rested for a few hours before our grand night out at dad’s restaurant of choice: Sundance, a local steakhouse. Mom, dad, Robbie, and I met with Shingo and Isabel for an intimate, fun dinner. Dad was very, very satisfied with the meal. Partially due to the steroid but also due in part by dad’s intention to live life fully, dad has been enjoying the full spectrum of food in a new way. He’s into full course meals, as well as big snacks in the interim. It’s been so fun to cook for him. He is a very willing recipient of pretty much anything. 

I must have come into contact with something Thursday night, because for the past two days I’ve been very nauseous. It took most of my strength (and Robbie’s kind offer to drive) to take dad to his Friday morning appointment with Dr. Colossi, his oncologist. Dr. Colossi reflected on my dad’s current state, and her nurse did a brief physical. Dad was a bit manic Friday morning, likely due to the high dose of steroids he’s been taking first thing. He’s also been slurring his words in a more conspicuous way these last few days, a symptom I hope will be remedied by the higher dose of steroid. After discussing this, Dr. Colossi recommended a referral to a phase 3 Stanford clinical vaccine trial. With our consent, Stanford would perform a test to determine if dad has the necessary mutation to participate in the study. About 20% of all GBM patients have this necessary mutation (Kennism: “if you had a 20% chance of winning the lottery each day, we’d all be buying tickets”). Dad will take the test as soon as the Stanford team has worked through dad’s paperwork. 

If it’s not entirely obvious on this site, it’s been very difficult to make decisive decisions about the clinical trials. We’ve been very interested in the clinical trials at Duke, but I feel worried of the physical and emotional strain a cross-country site would inflict onto dad. I’ve raised these issues to two of dad’s doctors, and both have remarked on how taxing the long distance travel would be for dad. Were dad to go through somewhere like Duke, he would go there first for the initial treatment, and then every two months for checkups and evaluations. Though dad’s energy is high for now, I know the trips would wipe him out for days or even weeks. It’s difficult to imagine what that would look like for him when his health starts to wane. Dr. Colocci’s mention of a phase 3 clinical trial based out of Stanford would be inviting for many reasons: local and familiar facility, and a team of doctors that are familiar with each other (or have even worked together on cases before), less risk of exhaustion for dad, among other reasons. We’re working through these decisions at the moment, and will have more to report soon. 

After the appointment on Friday, we headed back to the house. I was nauseous for the remaining day, though managed to watch Citizen Kane with dad in the afternoon. Dad has some movies on the top of his to-do list, and is always looking for a watching partner. Dad has an obscure preference for movies, and Citizen Kane is the first on his list that appeared remotely inviting. After the movie, Kelly, mom, Robbie, dad, and I grabbed some pho. 

Miles and Peter arrived from out of town last night. Miles’s 1am arrival wish was some fresh In-N-Out, which my parents very generously picked up for him on their way over to the airport. Today was the memorial service for my dad’s father, Wally. We all met at my grandparent’s late Clayton home and walked around the well-loved property. The service was intimate, honest, and light. My family, Peter, Derrick, Kay, Jonathan, Emily, and Anna, as well as my grandfather’s sister Emily, her daughter Kelly, and my dad’s cousin Jim were all in attendance. Everyone shared some of their memories of my grandfather, and Aunt Emily went through a lot of my grandfather’s early history that I had never known before today. Dad had been jotting down memories and thoughts of his father for the past few days, and he delivered a cogent, insightful speech alongside his brothers and other close family members. The service was touching and powerful to attend. 

Dad spent the rest of the day in Walnut Creek with his brothers and family members. From the report I got from my mom and Robbie, dad was wiped when he got back home with Peter. He was in bed before I got back home, but Robbie mentioned dad continued to slur his words. We’re working to see if this is something constant, or rather something that presents itself when he’s tired from the long day. 

February 26

Dad’s on the upswing from last week’s exhausted and sad mental and physical space. Today, on his second-to-last appointment for radiation therapy, dad was moving around with fluidity and vigor. It’s close to a miracle that dad, after 8 weeks of aggressive chemo/radiation treatment post brain surgery and terminal cancer diagnosis, has actually gained weight and headed into the gym for a workout. From what I’ve heard, many patients who take such an aggressive route of treatment end up having to drop out or taper the chemo/radiation because their body can’t handle it. 

I’m amazed by him, even during the low points and the sadness. On the rare instances where dad falls into a low place, he works hard to surround himself and keep himself vital. We just got him subscribed to the Wall Street Journal, and he’s still trudging through the History of the Ukraine. In this fundamental way, his cognitive abilities are in-tact enough to allow him to continue and deepen many of his most cherished activities. 

Tomorrow, mom, dad, Robbie, Shingo, Isabel and I will celebrate dad’s last day of radiation at a local steak house. Today he breezed around the house with a whole different air: relaxed, well-rested, and fully alive. I haven’t seen him like this in a long time, and such an improvement from just a few days ago. A note on the steroids: Mom and dad met with Dr. Ray today for a followup on the steroid dosage. We’re going to continue on 8mg / day for awhile, so as keep dad’s brain swelling, as well as mental and physical state in check. 

When dad got home this morning, we headed to a local sewing shop to pick out a belated birthday gift for Miles. He comes home this upcoming Friday night for Spring Break! Robbie and I are getting the car situation in order in anticipation of his arrival: we just picked up the Rav4 from the shop and have replaced the rear window. We also took dad’s car into the shop due to a broken taillight and detached undercarriage. Good fun. 

Things are smoother here than in my last entry. On my end, I was called into the hospital on Tuesday morning to support one of my pregnant mamas who was in labor. For me, there’s nothing like a birth to change your perspective on life. 

I’m eager for Miles to come home, and for this chapter of dad’s daily visits to the hospital to come to a close. 

With thanks,
Mikaela

February 24

With today behind me, I have a much better understanding of dad’s recent lapse in coordination and spirit. Robbie, dad, and I headed over to PAMF early this morning to have a checkup with radiation oncologist, Dr. Ray. Mom spoke with Dr. Ray yesterday about my dad’s concerning symptoms, so this was a checkup to get the steroid medication back in check. 

Dr. Ray is your typical doctor: balding, bifocal glasses, middle aged, and a refined bedside manner. He performed a physical on dad to determine his cognitive functioning. From there, we determined what the healthy balance for continuing the steroid. According to Dr. Ray, many patients continue on the steroid for up to six weeks post-treatment. We upped his dosage from 2mg / day to 8mg / day. This should help dad’s coordination, give him a bit of euphoria, as well as keep dad’s appetite as voracious as it has been since the surgery. Side note, dad is definitely not missing any meals. In fact, a surprising and entirely unprecedented belly has begun to emerge on his frame!!!! 

I stayed to speak with Dr. Ray privately while Robbie and dad went into radiation (only three treatments left!). Though it’s so difficult to pinpoint any explicit sense of what the future looks like, I’m trying to understand where dad falls in a doctor’s line of patients. I’d really like to know what the doctor sees when he looks at dad’s chart, because we’re all moving around blind here. Dr. Ray was as helpful as he could be, though I still struggle to understand. 

Robbie, dad, and I headed to breakfast once we finished up at the hospital. I’m studying for the GRE, so I’m carrying around a box of vocab flashcards. The three of us worked on the words together – no surprise that dad offered a definition for each of them without delay or question. A lifetime of crossword puzzles and reading will do that for you. 

It was that time again! Dad and I headed to the nail salon to get our monthly mani-pedi. I’m doing my best to draw the line between “taking care of” and “caring for”. Though I have cared for dad’s nails recently, I realize that it’s more enjoyable for both of us to get the nails taken care of. So we headed to Touch of Elegance where dad indulged in a long foot rub. We left happy. 

Dad spent the rest of the day snuggled up in his sleeping bag reading the history of the Ukraine. When I got back from a run, I found him in the middle of an atlas, a world map, and his computer researching different aspects of the Ukraine. He’s retaining the information he reads, and is reading a ton these days. I’m relieved he got those skills back post-op; they were heavily weakened initially after his surgery. 

Dad got a Rosen session from mom after she finished up work for the day. From there, the four of us sat together while dad had a late dinner. He was evidently wiped from the day, and blissed out from the Rosen, and he soon went to bed for the night. Robbie, mom, and I spent the rest of the evening discussing all the options for further treatments and upcoming decisions that need to be made. 

I’m exhausted, but had a full, fun day with dad. Though he was a bit manic (side effect from the steroid dose increase), he was highly engaged and available. My hope is that tomorrow brings more of the same. 

With thanks, 

Mikaela

February 23

I’ve been worried about dad’s state of health a lot this weekend. Immediately after his surgery in December, he’d spill from the left side of his mouth with each sip of coffee, water, or juice. As he’s recovered, the spilling has all but stopped. The last few days I’ve noticed that dad’s been far less coordinated, and hasn’t been holding liquids in his mouth. I initially believed his clumsiness was due to the long walk he took on Tuesday afternoon. But the imbalance and lack of coordination has continued through to today. I’m worried that this indicates something about the growth of his tumor. His radiologist mentioned a few times that the effects of radiation and chemo to shrink and contain the tumor would likely continue well after the treatment wraps up on Thursday. I kept this in mind, but found it hard not to fear that perhaps a few days ago we had witnessed the peak in dad’s energy, motor control, and cognition. I know that he will return back to the wheelchair, but have recently worried that this would happen in the immediate future, rather than in a few months or even a few years from now. 

I encouraged dad and mom to take it easy, and to let him rest as much as he’d withstand. I’m worried about stifling his independence, but worry that his mobility will drop off precipitously, before anyone’s prepared to offer the necessary help, and before dad’s willing to receive it. Last night, I felt weighed down by the inevitability of dad’s disease, and also by the realization that dad’s progress (someone who is more or less entirely mobile, though still handicapped in some mental and physical ways) could deteriorate at any moment. 

Mom checked in with the on-call radiologist today to check in about dad’s symptoms. We learned that these could be explained by the recent change in dad’s steroid dosage. Remember the concerns about dad’s swelling after his surgery? The steroid worked to prevent the brain’s swelling, and the recent and steep drop-off from the steroid may have led to some brain swelling. This might explain his lower affect, clumsiness, and difficulty retaining fluids when he drinks. We’re going to up his steroid medication and decrease the dose at a slower rate than before. 

David, Arielle, dad, Robbie, mom, and I all hung out around the kitchen this morning. David headed back to Aspen this morning – it was really good to have him in town for the weekend. In the company of Mike, Andy, and Kelly, we shared a wonderful dinner last night. Arielle, too, headed back to Boston tonight. Though I wouldn’t give up these visits for anything, it’s tough to say goodbye to these loved ones. Mom, dad, Robbie, and I are now holding down the fort. 

I feel I owe this to my Kelly Johnson, after imposing two dog baths onto her in my previous Caring Bridge post. Thank you, thank you for your kind willingness to wash our stinky dogs. They are so soft now, though I know it was tough to get them this way. Kelly, it’s hard for me to communicate just how much I appreciate all that you do here, but gratitude for dog washing is the least of it!

Sitting here with dad in the living room, he chips in a thought: “So I’ve been thinking about this whole brain cancer thing, and when you think about it I really won the lottery.” Just looking up GBM on wikipedia supports this insight: incidence is 2-3 per 100,000. Dad goes on to say, “the doctors made the point to tell me that the cancer had nothing to do with anything I ate, anything I did. So all that stupid stuff I did… that had nothing to do with this.” Considering what I know about dad as well as my observations these last few months, I think dad will continue to find thrill in his suffering. That being said, it may not be to the same degree as his recent adventures in Bali and Australia, as well as the endless stories of dad’s stupid/awesome travails.

With love.

February 21

This is the report I was working on this morning: Dad is still recovering from the 4.4 mile walk from Tuesday. Consistent with his nature, he overdid it. The last few days have been spent resting and dozing in the sun, while finishing up The Second Machine Age. At the moment, we’re getting ready to head to radiation, and are drinking coffee and reading the NYT. He’s also started listening to NPR on his phone throughout the day, so he’s accompanied by this soundtrack as he moves through the house.

Dad’s mood has been pretty low the last few days, which is something I’ve felt very sensitive to. The last few days, probably since around Monday, have been a little bluer than the previous weeks where dad’s energy disguised for any of our concerns of long term prognosis. He’s still pretty physically active, but a little less sure on his feet: losing his balance, trouble with fine motor control, among others. He’s also neglecting some of the basic self-care tasks like changing clothes and brushing teeth. I’m a bit concerned, as personal hygiene is really important when you’re undergoing treatment. Additionally, his energy is more frenetic, and he’s much less focused in our conversations. 

Danny came to help out yesterday. By the time they got back home at 10am, dad was wiped. He went straight to Hunter’s room for a nap. We made him some lunch and let him be. He was happy to finish up one of his books, but otherwise spent the day outside in the sun. 

Today was a different kind of day compared to the rest of the week. Having rested for three days after his long walk, dad was higher energy and more engaging. My dear friend Arielle is in town for the long weekend. She dodged the Boston winter to come spend a few days in the sunshine with me, and we’ve been spending some good time outdoors. Arielle, dad, and I headed off to radiation this morning (only four more sessions left!) and spoke with his radiologist after his treatment. From the looks of it, the radiology therapists look forward to seeing dad: every time he walks into PAMF for treatment, he’s met with a warm welcome from the team members. He’s usually talking about music, bike accidents, trips, or books with some member of the team. Today, one of the therapists gave dad a CD with all the tracks of the Batman soundtrack. No idea where this came up in conversation, but dad was happy to receive the tracks. 

Under orders, we’ve been lowering the steroid dose, from 2 pills twice a day to a half a pill once a day. He’ll wrap up taking the steroid come Thursday. Dad’s radiologist, Dr. Shifner, explained that euphoria is a common side effect of the steroid dad’s been taking (to reduce brain swelling, specifically). This side effect may explain some of the lower-than-usual moods dad has experienced this past week.

Dad regularly leaves radiation (especially later in the week) exhausted. We usually go home where he’ll rest for most of the rest of the day. Today, we walked to a nearby cafe for some pastries and french onion soup. Dad was engaging and talkative, and more himself than I’ve seen him in a long time. It’s often difficult for me to describe what it is about him that’s usually missing. From my time with him today, I realized that what’s so often missing is a level of clear-headedness and personal investment in the things he talks about. We talked about books and philosophy and travel, and in those moments I felt that he was back. 

Having rested for the previous three days, dad was eager to do some light isometrics at the gym. Arielle and I did some of the exercises with him, and I was reminded of how strong and focused he is in his rehabilitation. He sets up a plan and adheres to it. But even more impressive is that he’s listening to his body (most of the time) so as not to push it when he starts running low. 

Dad rested and read for most of the remainder of the afternoon. David Clark’s in town for the weekend from Aspen, and the six of us (mom, dad, David, Robbie, Arielle, and I) headed out to Thai for dinner. I realized while we were at the restaurant that this is the first time we’ve gone out to eat for dinner since before dad’s diagnosis. For the last few months, dad’s energy has dropped off pretty early in the afternoon and he’s been in bed by 6pm at the latest. His stamina to stay up has increased quite a bit, and this dinner is a wonderful indication of his current abilities. 

I think the way for dad to feel sustained and energized is to keep his energy up while not overdoing it. At times – like his 4.4 mile walk, or his 2.5 mile walk (25 miles according to Charlie) a few weeks ago – he depletes his stores that allow him to really participate in the world. When he pushes it, it takes him a long, long time to get back to feeling good. I’m working hard to find a comfortable balance with supporting him and letting him be in charge of what he does, and with talking him through the trends I’ve noticed with his energy. I’ve found he’s very receptive to observation and conversation, so it’s a matter of bringing it to his attention before he takes the 4.4 mile walk. 

Tomorrow dad’s spending the morning with David, and then we’ll all spend the evening with Andy, Mike, and Kelly. Fingers crosses that Kelly will wash the dogs – they’ve developed a noisome odor that plagues any and all who pet. 

Today was a good day. 

With hope,

Mikaela

 

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February 18

Dad walked 4.4 miles today! And this was after his swim at the gym this afternoon. 

After radiation and a meeting with his oncologist, dad came home with Danny. We spent some time together at the house, trimming his beard and relaxing. Around noon I made him some (fresh) eggs with avocado  – one of dad’s favorite meals since Bob introduced it to him on his visit – and he headed over to PAC with Danny. 

After Danny headed out this afternoon, dad took a really, really long walk through Menlo Park. He headed to the hardware store, and then to the library. He got home around 7pm, and seemed relaxed and tired from his long day outside. He also picked up a spicy hotdog from 7-11 (I can only imagine what that must have looked/tasted like). I’m really impressed with him today: his first solo trek since before his diagnosis in late December. I imagine he feels a growing sense of independence and sturdiness as the days go on, and I feel relieved to see him setting off on his own. A also feel relieved that he has (so far) stayed away from another drive around the neighborhood. Dad may have been be reckless and accident-prone, but he has been moving deliberately and with caution since surgery. 

Grand theft auto, part 2: my Rav4 rear window was busted today in Palo Alto. Perhaps it’s karma for the poor Ford’s demise, I don’t know. The only thing stolen was the purse I got for my graduation. Despite the rather manageable hassle this introduced, I lost it. I’m calling it an early night. 

To a better day tomorrow–

February 17

Sitting here in front of the fire with the dogs and Robbie, I feel a sense of gratitude and peace from today. Radiation was cancelled today due to the holiday. After heading to the 7am meeting with mom, dad came back exhausted and spent the rest of the morning asleep. Hesitant to wake him up, we all headed out on our separate errands. When I heard from him, he mentioned he thinking a lot about things. From the nature of our conversation, it was clear that he was having a pretty low day. I encouraged Hunter and Miles to reach out to dad, checked in with mom, and made my way home as soon as I could. 

When I got back, we spent some time discussing what was going on in his head, and where he was at with respect to the current reality. He’s pretty low, and working hard to stay in a positive mental space. The way I see it, the prognosis is what it is. The doctors can’t make an accurate prediction because every case is different. Though the news is grim and the expectations are difficult to swallow, there are a lot of things in dad’s control at the moment. Such as, his exercise and his nutrition. The fact that he’s able to exercise and improve in his strength, flexibility, and motor control means that he’s in a better physical condition to move forward. And the mind feeds off of the body’s state, especially with the help of good food. Anyways, we discussed the nature of general health, and looked at it from the perspective of his illness. Though dad’s pretty sharp these days, he really appreciates being reminded of important things to keep in mind. He’s incredibly receptive to ideas and explanations for decisions. In many ways, we’re all dealing with a lot of the same questions and realizations, though these strokes of insight weigh heaviest on dad. It’s healing to discuss our understanding of the situation together, and helps piece together the way we approach the future. 

After lunch and our conversation at home, Robbie, dad, and I headed to Tae Kwon Do. We all trained at Golden State for years, and it’s been really nice to go back to training now that I’m back in town. I’m hoping to move forward with my training and teach beginner’s TKD to the youngest kids (around 5-7 years old) now that I’m back. Watching me teach class and the visit with the instructors and other students was a happy break for dad today. Though he doesn’t always remember seek it out, he seems so cheery when he’s able to spend time with historic friends. It’s been about a week since Bob left town, so I imagine that the craving for visitors has started to resurface. 

The rest of the afternoon was spent running small errands for dad, and getting some groceries. As I’ve discussed in previous entries, dad thinks of small errands to do to get organized. Bags, tech products, hats, belts, and other things are all small fixations that he comes up with to get his work and living environment all situated. He’s happier when things are in order, and it’s a quick task for the rest of us. Plus, some of the best time together takes place getting from one errand to another. 

When we got back home around 6pm, Robbie and I started cooking dinner for the four of us. Dad set up the fire, which soon lured the dogs inside. Mom, dad, Robbie, and I enjoyed a slow meal together discussing future plans in CA. 

I look forward to tomorrow, and hope dad’s mental state is lighter. I know he’d appreciate phone calls and/or messages from each of you. 

With love.

January 17

With a house full of friends and family, things feel pretty good around the house today. David Clark and Jon Zimmerman are here for the weekend, and dad seemed very happy to spend the evening with these two.

The day was a success for many reasons: First, dad woke up and had three bowel movements – a sure route to happiness for him. Second, he showered! Not only is this a kindness to his caregivers, but it’s also really important to prevent skin infection while he’s on chemo. Third, today was the end of the week for his radiation. Dad seemed to be really happy about this, and ready for the weekend. He’s pushing to go to Santa Cruz with Jon and David – TBD.

We (mom, dad, Jon, David, Colleen, and I) had a big dinner of Moroccan chicken this evening – thanks to my mom’s good friend Colleen.

Today was an overall successful day: I think we’re getting a little bit better at planning ahead, and using the help we’ve found to relieve some of the remaining stressors. Today, I felt like we were ready to meet my dad’s needs and use the skills we’ve developed to support him as smoothly as possible. Every day he’s transferring with greater balance and strength, so there is less of a physical tax on our bodies.

I’m wiped! I look forward to tomorrow, where we have plans to spend with Jon, David, Andy, and Kelly.

Until then—-