March 25

Hello all, 

Lots of the same over here – dad’s energy has plateaued with small ups and downs each day. I can usually tell how he’s doing from how he behaves in the morning – it’s a relatively up day when dad doesn’t stumble, spill, or trip, or if he’s talkative and engaging. It’s a down day when he sleeps through until 9am, stumbles while getting to the bathroom, or drifts off to sleep throughout the morning. The plateau – regardless of high or low – looks like this: slurred speech, dragged left foot, confusion (“good morning, Hunter” when Hunter is in Boston, or the same question asked on repeat), New York Times left outside the gate until I go fetch it, quiet house, and a lack of dad’s presence despite the physical space he occupies. I spend every morning with him, as well as a large part of each day, but when I was driving him to lunch on Friday afternoon, it felt like I hadn’t really engaged with him in weeks. 

Dad’s taken a new approach with communicating how he’s doing. Now he’s using an academic rating scale (A – F) to let us know how he’s doing. A = no noticeable impairment, B = slight impairment, C = requires explicit attention to manage, D = one (or more) incident wherein he fails to manage effectively, F = requiring constant care and attention.

Today was more of a down day. Dad woke up before me, but spent a good hour in the bathroom (he tends to get cozy wherever he lands, and feels no need to change locations most of the time). I woke up to a batch of coffee (irregular, as I’m usually the one to make it each morning), and dad soon confirmed with me about an upcoming appointment with his Oncologist. He forgot what day and what time the appointment was, despite my continued efforts to remind him. 

I guess this is what you call chemo brain? A general fogginess and pervasive confusion of what’s what. Anyways, he went back into his (formerly Hunter’s) room for a nap while I went on a run (training for the marathon – let me know if there are any others who’d like to hop on the growing bandwagon! San Francisco Marathon’s Race day is July 27, with marathon, half marathon, and 10K options). 

When I came back, dad was eager to join in on my day’s plans, which consisted of a trip to Burlingame for an appointment and lunch with Robbie and I’s soon-to-be-roommate, Gavin. Dad spent the early afternoon in the Burlingame Library, and took a fall while he was there, which automatically ranked his day at a D. He was noticeably shaken and quiet, though he brought the fall to my attention right away – a significant improvement from last week where he fell twice before noting it just before bed. 

At lunch with Gavin, dad was as quick and intellectual as ever. Dad and I were shaken, but the lunch itself was soothing and good for all three of us. From there, dad and I picked up a treat from Peet’s: one large whole milk mocha with whip cream (“somewhere between half and half and butter, I think”). We chatted on the ride home, and he headed to sleep shortly after we got back. From what dad says, his experience is one of exhaustion – though not so simply described as being tired – and fogginess. He’s often gazing into space and zoned out. In all my memory, Dad has been present and engaged. I can’t remember a single time where he just drifted out of a conversation. These days, he’s regularly taken out of the present space and into somewhere out of touch. 

Mom, dad, and I are here in the living room now passing time. Despite having spent all day with dad, I’m missing him. 

We see dad’s oncologist, Dr. Colocci tomorrow to prepare for the second phase of dad’s chemotherapy. 

Wishing warmth and support to you all –  

Mikaela

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March 18

It’s 4pm and I’m sitting here at the Palo Alto Medical Foundation Urgent Care facility. 

Dad woke up with a very painful headache around noon. When he mentioned it to Hunter at 2:30pm, we immediately took him into Urgent Care. Until this point, dad has complained of pain only twice since his discharge. Once after a 4 mile walk, and once after he fell and hit his head last week. His pain today was located on the right side of his forehead, and moved down his right cheek as the day progressed. He labeled it as a 8-9+ level of pain on the universal pain scale from 1-10. I don’t recall him at a 9 once since he was diagnosed in December. Does it need to be said? I’m concerned. Dad is currently feeling nauseous and vomited a few moments ago. 

The Urgent Care team spoke with Dr. Schiffner, dad’s radiation oncologist, who recommended they give dad 4mg of decadron (steroid) ASAP. From the sound of it, Dr. Schiffner interprets dad’s intense headache as a response to brain swelling. Perhaps the careful balance of decreasing steroid and keeping his brain inflammation down has gone out of whack. His steroid dosage has increased for the moment, and we will decrease the dosage more slowly next time (how to decrease more slowly I’m not sure.. We’ve been at 2mg for 2 weeks now, and before that we were at 4mg for a good week). Something to keep in mind is a note from Schiffner: He mentioned that dad will ideally go off the steroid, but the fact that he’s on it now does not mean anything’s wrong. 

Now at 4:30, dad’s pain is at a 7/8, and he’s in a restive sleep. Light snoring and twitching – the usual. 

At 5:40, the Urgent Care doctor says we’re okay to head home. We are now working on discharge – Dad’s “grooving with that plan” (his words). 

The last few days have not been the best for dad. He’s wholly exhausted, and has been spending most days sleeping. He fell twice on Sunday. When he fell for the first time in the bathroom, he didn’t mention it to us until later that evening. When he fell the second time, he was on his way to bed for the evening. Unfortunately he cut his left arm pretty bad, and was bleeding. I doctored his cut, and tucked him into bed. 

Monday morning, mom, dad, and Hunter headed to UCSF for a second opinion with the UCSF neurology oncology department. I was unable to make it to this appointment due to a work commitment, but will relay the information that was passed my way. The short of it: we won’t be fiddling with dad’s treatment at the moment, as he is responding well to the current treatment path. Upon recurrence, we will seek out additional treatments. From the sound of it, why meddle with the treatment course if it’s working? 

Dad spent the rest of Monday afternoon sleeping. Hunter and I went on a warm and sunny hike, and spent the time processing all that’s going on. When we got home, dad was still sleeping. Though he spent the day in bed, he said he was “in for the night” – aka no dinner for him. 

Moving with the flow, we’re resting and hoping for more energy and less pain in the upcoming days. 

March 15

Hi all, 

Mom, dad, Hunter, and I just wrapped up watching The Great Mouse Detective this evening. Hunter, home from Boston for Spring Break, bought home the idea that we should revisit dad’s most favorite movie from when we were growing up. For all those who haven’t seen this masterpiece, it was just as fun today as it was 10 years ago. It was also a huge improvement from dad’s rather dry choices of films.

Hunter brought a lot of energy into the house from Boston. Mom, dad, and I are so, so happy he’s here for a visit. When he was here last (January), dad was still in the hospital post surgery. Though we’ve been in touch with Hunter, I can only imagine the shock and surprise he encountered in his initial visit with dad. If I were to look at dad from Hunter’s eyes, I’d notice his mobility (he was entirely wheelchair bound when Hunter was last here), lucidity, big belly, hair loss (from the chemo), swollen face (also from the chemo), exhaustion, decreased energy, decreased agitation (due to reduced steroid doses), and overall contentedness (dad’s happy to drink coffee and read the paper for most of the day). 

We met with Dr. Schiffner on Friday for an interpretation of dad’s most recent MRI. Though this is a *very* preliminary test (most tests are conducted 6-8 weeks after finishing radiation, but dad’s was performed 4 weeks after because of tentative interest in a clinical trial), the tumor had relatively less inflammation than prior to initiating treatment. This is good news for now: some GBM patients have tumors that barrel through the radiation and grow, others have tumors that show up in different places in the brain. Dad’s inflammation is reduced, and it’s likely that the inflammation will be further reduced 6 weeks from now.

With respect to the recurring alternative / additional treatment predicament: we have a consultation with UCSF on Monday where we will learn about the additional treatments UCSF has to offer. 

Dad’s general state is precarious these days. After his MRI on Thursday, dad and Danny headed to UCSF to drop off the MRI CDs. On his way to reception, dad fell and hit his head. In addition to this incident, I witness him losing his equilibrium frequently. Dad, Lyle (one of our dogs), and I went on a walk around the neighborhood yesterday, and he struggled to walk in a straight line. Dr. Schiffner explained that dad’s reduced coordination may be explained by post-radiation fatigue. We hope that dad’s sense of balance and energy will recover in three to four weeks. 

Other highlights: I found a 3 month old cucumber in our pantry from an incomplete organization post grocery. I’ll save you the trouble of conducting this experiment on your own: 3 month old cucumbers turn orange-yellow and the rank smell spreads through the entire house. Though neither mom nor dad noticed the smell, the house is happier with it disposed of. 

Spirits are calm and positive.

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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

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.