what would you miss?

Yesterday I completed my one year scan. It was both anti-climactic and stressful all the same.

If this comes back with results similar to the last test then I’m in good shape. If it doesn’t then I’ll need to see where things stand. At minimum there would be another biopsy involved with a round of interpretation and all that entails. Has it transformed into something scarier? Is it growing? …?

This time I had the appointment scheduled at Kaiser Oakland. Thankfully it didn’t involve a trailer. I learned by asking the tech that Kaiser outsourced their PET/CT services to a third party, hence the trailer and somewhat variable service in the past. The Oakland offices were downright plush.

I was anxious all day. Too anxious to even write this post. I ended up doing some small tasks that needed to get done, and many others that required little brain power. After several failed attempts to be productive I gave up. I decided instead to make a jar of homemade Ghee and play with the kids. As I scooped the frothy milk solids from the top of the melting butter I was reminded how the small pleasures never really make it to the top of the priority queue. But they are mighty important. A focus on craft, toward elusive perfection, transcends any given activity. Perfection is more a state of being, less an output. Making that Ghee was probably the most satisfying part of my day.

Find as many opportunities to practice perfection as you can – regardless how seemingly meaningless the task. Actually, the more menial activities might be better because there’s no pressure. I’ve been lately trying to build in as many of these moments as possible to combat my natural tendency to do things just good-enough. I think I created this pernicious habit in misguided attempts to squeeze ever more into short days… which may achieve that aim. I can tell you that this comes at the cost of satisfaction! This habit of focusing on perfection is a good antidote. The trick is to choose those areas of focus wisely.

What is it you would miss if your time was cut short?

That was the main question I sat with in the darkness, as the radioactive isotopes mixed with my blood and organs. It’s easy to get caught up in nonsense when pondering the big ideas. This question cuts through most of the cruff. And good answers here seem a solid input to pipe into the bigger, more ambiguous questions such as, what do I really care about?

While I aspire to more the truth is today I’m trying to remain calm while waiting for these results. Frankly, I’m not doing a very good job of it. But I did make some pretty great Ghee.

Test results by Friday.

Ghee whiz

Do Less

We flew back from Boston a few days ago. I’ve encountered my share of turbulence on planes but this was the worst I had ever experienced. The metallic rattling of luggage in the overheads was sickening. I imagined getting torn to bits at 30k feet. I looked down at Lev, my boy, in the next seat. I noticed his thick wavy hair, freckled cheeks – pure boyishness! He was calmly staring at the seat ahead. And I thought that if this really was the end, our last moments, that I would just want to appreciate all that he is and tell him I love him. Not much else would matter.

It’s hard to find that level of focus in the daily grind. Too many tasks and details, always humming in the background. Often I’ve found that making a game of things can help. There can be a certain pleasure in doing mundane things. Some of these things really need to get done and are unavoidable. But too many others are the result of our own confusion/tendencies; it would be virtuous to recognize when we’re adding unnecessary complexity to our lives and to ruthlessly weed that out.

Last month I did a Pareto analysis on my 2019, identifying the 20% of activities that drove 80% of benefits. I basically went through my calendar, weekly notes/goals and photos, and picked out whatever drove the most impact and personal satisfaction. Given how much I sorted through (and how short the list was!) suggested I should be doing less! For example one activity I found satisfaction in (and missed when I didn’t do it) is writing. As a result I’ve committed to doing more of this in 2020.

I’ve always thought a great measure of whether one is focused on the right things comes from Nietzche’s Demon, basically: if given the choice, when this day is over, would you want to repeat it? Would you want to do it all again? If it’s a resounding yes then you’ve done well. If not, well, that might be worth exploring.

It’s important to keep in mind that the trajectory matters more than the instance. I prefer to think of this as the area under the curve vs. the instantaneous blip; it might be bumpy but that might also mean it’s really worth doing (i.e., large area). Some days we just don’t feel like doing whatever the obligation is. That’s very different than feeling like one’s actual arc is off-course, that they’re sailing on the wrong ship. One might not have loved the day they just had but consistency, professionalism and discipline are essential and non-negotiable. That should smooth out over time.

I think a good way to address this challenge is to extend the time horizon to a month or quarter and run the visualization/thought experiment prospectively: if given the choice when this <quarter> is over, would I want to repeat it? Personally I’ve found this to be quite a useful approach.

The other way to do this is to track daily satisfaction and analyze the trends retrospectively. One way to do this is with a daily tracker: Rank your overall emotional satisfaction on some scale (I use: -2 to +2, 0 being ‘meh‘) and monitor over a quarter. If the score is below some level of acceptability (the bar) then it’s probably time to change it up.  

Pursuing Solace

Solace. Where do you find it?

As a kid I was shy, skinny and lived in fear way more than I’d care to admit. One of the things I particularly hated was middle school swim practice. Not only were my awkward limbs on full display in a speedo, but I had bad asthma too (I used an inhaler multiple times a day). So what would happen is during swim practice I would get slapped on my feet, sometimes even grabbed and pulled back like the counterweight in a horizontal elevator system, accelerating the puller. 

At the start of practice there were moments of free swim during which we, kids, could ostensibly have some fun. Mostly this time manifested in various creative forms of meanness. That wasn’t so memorable. But the escape from it was. 

I found great relief under the water. Here, the cacophonous harsh surface of land animals gave way to silence and grace. My racing brain could slow down and take in the moment. Bliss. Here I learned to calm myself, realizing I could stay underwater longer that way with my otherwise skimpy lung sac capacity. Though conventional wisdom says we should breathe to calm ourselves, it was actually the absence of breath that got me there. From behind my blue-tinged goggles I would see dissociated limbs from those horrible kids carving smooth shapes beneath the surface. It was great.

Today I find solace in activities that I think of as ‘deep work’ or flow activities. It still feels like going under water to me. Always. The noise of the world falls away, leaving that same serenity. It’s in these activities: writing (e.g., this post!), coding, analysis, running etc. that the magic happens. 

Having tracked this off and on for years I find that actually there is something of a dose-response curve here: the dose is hours of focused work per week, the response is emotional well being. Without a minimum dose of weekly ‘flow’ (about 12 hours/week) my emotional state suffers.

In a very real way keeping this blog is like an insurance policy towards preserving sanity. So thank you for reading!

2020, already 37% better

This will be a year of new beginnings and greatness. That’s so easy to say at the beginning of the journey, right? But don’t be fooled. If you’ve been doing the work all along then the journey is of course a continuation of the past, it’s just marked with a somewhat arbitrary timestamp. 

Take this morning. I dropped into the gym for an early workout. I’ve been trying to fix a nagging knee issue for some time as I try to up my weekly running mileage. I did some treadmill work since it’s a bit easier on the knee than running outside. I was about to leave but decided to throw in a few squats just because I felt like it. The squat is a really hard move for me, always has been for whatever reason. I planned to do one set for a handful of reps just to test my strength. First set felt good. Then the second. Then a third. I kept adding plates. By the 6th set I was squatting literally 37% more than last week (which I calculated based on 1 rep max to normalize). 

That’s not because “2020 is sooo amazing!”. It’s because I’ve been working my butt off (literally, my glutes are the weak part of the chain, causing the knee issue) for the past 2 months and today was a breakthrough. That’s how this game works, like adding fire to a pot of water: looks like nothing happening, then suddenly, magic, it boils! This would not have been nearly so interesting, or notable, if I didn’t have a baseline of hard workouts and self-doubt behind me (I f-ing hate squats and I’m not built to do them, etc.). 

I realized that I’ve gotten accustomed to getting good at the slog without a feeling of payoff for so long that I almost forgot that in fact there can be breakthroughs and progress, highs associated with winning. Not that this example is anything particularly impressive or awesome in the grand scheme, but it was one of those little personal wins that affirms that progress is possible. 

So where’s the limit? How far can this go? I’m not sure but this morning I was handed a lofty assignment – see the video (1:30 onward if you’re in a rush).

Here’s to 2020 being a year for asking bigger questions…and maybe even answering some of them!

Lua turns 3

Yesterday Lua turned 3 years old. 

She helped me get through my dark days. She still does. And her ability to navigate people (already!) amazes me. She has such a giant personality. Definitely a proud daddy. 

I’ve had this habit for a long time where I write down my thought process for decisions and big events. I’ll periodically review them to either understand flaws/gaps in my thinking with the benefit of hindsight, or pat myself on the back for my prescience (not frequent, but it sometimes happens). It kind of feels like checking up on a kid to see how he’s doing. Except the kid is me and turns out that time offers an interesting vantage point of seeing oneself without so much judgment, as an objective observer. This tends to be a deeply satisfying activity as I get to see either how I’ve grown, or if I haven’t, it often will point to areas of stagnation. It also reminds me why I made certain decisions and what I was thinking/where I was at that point. It’s so easy to forget. 

In reflecting on Lua’s 3 year mark I pulled out a letter I wrote to the un-named baby. I remember ducking into the bathroom, 5 minutes on evernote. Here it is.

Here’s a letter to you, my as yet unnamed daughter.

I’m sitting here with your mother and doula (Shannon) at st Luke’s hospital. This is where your brother Saul was born not 5 years ago. Labor this morning has been tough – we’ve been up since 2am with painful contractions. The anesthesiologist put in the epidural about an hour ago – a first in 3 births. Your mom is tough! Despite being fully dilated (meaning you’re ready to come out) mom is sleeping soundly. 

I’m deciding on names here in the precious few moments of downtime. It’s not easy. We’ve been thinking about this for a long time and still no good name we agree on. Mom always liked ‘Lua’ as over the years we would catch ourselves looking at the still moon – offering light to humans in the dark of night – wondering about life if we had a daughter. Maybe this will be your name. But when I meet you it might not ring true. I want to match the name to the person. I’m waiting to meet you. To see what’s in your eyes. Then we’ll decide. They are about to break your water bag to get things moving. 

Why is naming so hard? 

The name is not merely the vocal sounds we’ll be uttering for the rest of our lives. The most important part is what it’ll mean to you as you journey through this interesting planet of ours. How will it shape your identity?

It’s good to be without a name for a bit. There is such urgency to name things – as though labeling them removes some fundamentally troubling aspect about the mystery of existence. To name a thing is to corner and trap it. I’m quite alright sitting in that mystery for a few days with you and your infinite possibility.  

How is it that life occurs with such regularity? It’s easier to grow a baby than to draw a snapshot of one with a pencil and paper (try it sometime). We manipulate the body with drugs at certain concentrations and time intervals – our anesthesiologist was truly excellent – all knowable and regular occurrences with good batting averages. But all this leads to a false sense of knowing. Truth is if you pull on the thread hard enough we really don’t understand as well as the labels indicate we do. We label our food with nutritional information but still don’t understand metabolism well (no consensus on what ideal nutrition looks like)… We understand how anesthetics work but we don’t know why life is tuned to receive anesthesia. So there’s a neat paradox at play. We know how to do certain things really well, but we don’t quite know why they work. We’re like kids that have been handed instruments: we make them sound good without quite knowing what sound is. We don’t get to decide much in terms of your nature. Picking a name is hard because it’s the first real decision we’ll make as your parents. And I don’t want to start things off with a mistake. You are still perfect.

I listen to the background hum of a fan, ticking clock, muted outside traffic. Perfection…ah, no such thing in our world. Why? Let’s talk quickly about what it means to share a world with other people, with so many different characters. I had different anxieties with your brothers – mostly focused on my own worthiness, ability and readiness to jump into fatherhood. With you it’s different. I feel capable enough in managing the basics – discipline, bedtime routines, changing diapers, or changing the subject (people call it redirection to try and sound smart). 

But I really don’t know how to raise a daughter.  And I don’t have a good model to follow or intuition about how to do this. The women in my – our – family have struggled with lots of challenges not worth going into here.

So in considering what it is I hope for you my initial gut reaction is something akin to damage control. I’d like your own light to shine with as little diminishment from either my own mistakes, or the insults a woman in this world can expect to encounter: from those that intentionally wish you harm, to well-intentioned but poorly implemented parenting, to personal issues related to confidence or self-esteem, and so many more!). It’s not worth listing them here either because you’ll come to know them through media, stories and life experience. I won’t and cannot sugar coat that.

But damage control isn’t good enough. That’s to concede defeat. As your guardian I will try not to shield you outright (I will if I must, of course) which is probably the default parental intuition. Instead I want to teach you skills to navigate the turbulence of the world. No, the protection I as a father will offer you will not be that of a vigilante with a club, but rather that of a ship captain teaching his young apprentice. This world is for skillful interaction not sheltered cowardice, for addressing problems head-on, not shying from them. It’s for Tikkun Olam (making it better) as a member of society.

My name, Ari, in Hebrew means Lion. I’ll need to tap that power to guide you. Names mostly do remain incantations of the vocal plane, and in that they don’t matter so much. But in times of hardship and uncertainty they can take on special powers. Whatever your name ends up being my hope in this name is that it serves you in time of challenge. I love you already.

Ok time to get you into our lives. More later.

the space between sets

If you asked me as a teenager I would have told you the payoff of workouts was in the primal aspects of the activity, the immediate feelings. It was about seeing how hard I could push the body. All that adolescent aggression had to get channelled somehow. This was easy and satisfying. It was about adrenaline, the ‘pump’.

Later it was about the effects of the workout, over a longer time period, seeing the progress of lifting x yesterday, x+1 today. Or running a 400 lap at some pace, then shaving seconds off of it next time. Or running a race faster year over year. That is, the results were the focus.

It’s still about all those things. But during treatment, and ever since, I’ve noticed something interesting; the main benefit, and frankly the key motivator, is in the space between sets, in the process itself.

Generally how it works is some maximal exertion, like heavy deadlifts, is followed by a quick 1-2 minute sit on the floor – usually with a notebook to capture random ideas or plan the day. I try my best to fill the whitespace with something useful – which includes just feeling good. The key though is bringing my awareness to these moments (they were, of course always there!). I’ve shifted my focus and it makes a difference.

So if I workout lasts 45 minutes and did 15 sets of strength training (allowing for transitions etc.) that’s still a solid 15+ minutes of clear-headed thought. There’s an after-effect as well that seems to last a good part of the day. That’s more than I would get in a typical ‘sit’ and actually feels much more energizing. It’s probably the clearest thinking I do.

I’ve been trying to ask this of myself lately: what might I notice and appreciate in the whitespace of everyday experience?

a surfing lesson

I went surfing yesterday with a friend (thanks for joining Pascal!). It’s been a while. I caught a few waves, not much by the standards of some of my friends, but exactly what I wanted. We ended up spending most of the time floating past where the sets were coming in, surveying the horizon, just talking.

After riding the nth wave and as I approached the beach I had a choice: do I paddle back out for another wave, or do I head back in? I stood up in the shallow, frigid Pacific water. It was awesome just surveying the overcast scenery for a minute: the Pacifica cliff faces, birds overhead, the sound of water all around.

I wondered, just how much do I want to catch another wave?

If you’ve ever gone surfing then you know it takes a lot of work to catch a wave. You don’t just show up. I ran some quick mental math weighing effort vs desire. I knew the effort part but the desire was less clear and worth considering. How much pleasure would I get from another wave (literally that’s what I was thinking while standing in 50-something degree water, my hands turning purple)?

The more I thought about it the more I felt like it wasn’t desire that was driving me to go back out – I wasn’t pulled to do it but felt like I had to push to convince myself. If I really wanted it, I’d be compelled to just do it. I’d already be visualizing what it would feel like to ride that wave; my ideas would branch into new areas of inquiry, say about the physics of my body balancing on the board, and the board on the wave; I’d be thinking about where to position my board most optimally to catch the waves; I’d deeply consider my paddling form; angle of entry to the wave. If I wanted it I’d be obsessing about the details. And if I really wanted it there would be emotion driving the decision to just get out there. In short this wouldn’t be a question – I’d be doing it instead of standing around, literally freezing my toes off!

It’s worth asking the question about what’s pulling you to do just one more: whether it’s one more set in the gym, another mile repeat, one more climb up the wall, another practice problem, sales call. I think that’s a really interesting heuristic to gauge deep interest. To what are you compelled to do just one more without really thinking about it deeply? That’s a good indicator about whether you’re doing the right things or not. In effect the effort part of the equation becomes small, perhaps even irrelevant.

For example when I go running it’s seldom a question – I’ll always tend to throw in one more fartlek. Or if I don’t it’s because I know what I’m trying to achieve for that workout and know to reign myself in. I think this distills down to something along the lines of “I do it just because I like doing x activity”. That seems like a reasonable enough definition of a compulsion, or obsession.

In the end , while the thought of going out again seemed fun it wasn’t going to be enough to offset the effort required to do it.

I did however feel compelled to write this post.

A talk at the Leukemia & Lymphoma Society

Last night I gave a talk at the Lymphoma and Leukemia Society (the LLS) at the Sales Force tower. You might have heard about them in context of Team in Training, or their Light the Night events. The LLS is a great organization providing access and information to blood cancer patients around the world. Thanks to my friends that were able to come out and support!

I usually like to be prepared for these kinds of events. I had written up some notes but ended up scrapping it last minute and speaking off the cuff about my experience. It just felt more appropriate to talk about cancer while throwing the script out the window.

If you weren’t able to attend here’s a video.

diet & health practices

I get asked this a fair bit, including from the doctors so I figure it’s worth posting (I also wanted to check myself to see if I stuck with what I said I would do, turns out it is consistent with an earlier post). Let’s start this with some caveats. This does not constitute medical advice. I generally followed Pareto’s law (80/20 rule), not getting fanatical about really anything. Generally what I’ve been doing is based on my readings of the literature, common sense and always via the lens of what works for me. What works for my body could be exactly the wrong thing for yours. That said I haven’t seen much negative evidence for any of this. For example I considered the Ketogenic diet after reading much about it re: curing cancer and etc. But on reading deeper into lymphoma specifically there is evidence suggesting possible negative effects of high fat diets. Also the studies I’ve read on Keto were mostly for solid tumors, I could find little to nothing on blood cancers. For that reason (and frankly the impracticality of it, especially with kids) I didn’t go down that path despite some initial interest.

What I can confidently claim is that in aggregate the below definitely had a placebo effect, might/might not have had some physical effects, and definitely did not have negative effects. With all that said here’s what I did most of the time:

Things I did consistently:

  • Green tea basically all day long. I brew it extra long so it’s extra bitter, frankly kind of gross.
  • fast until noon OR one meal at the end of the day. I would say I averaged 4 days/week pretty consistently here. My weight did not fluctuate much, interestingly. I also found that once I made it until noon that was highly predictive of going the full day until dinner. What the heck, I’m already here and I’m not hungry. I’ve always hated eating lunch anyway (slows me down), so actually it’s pretty easy.
  • If I did eat breakfast it was oatmeal. I can eat this all day long. It’s not your childhood sugary oatmeal. It’s steel cut/quick oats with cumin, turmeric, pepper, cinnamon, coconut oil, raisins, walnuts. Maybe a drip of honey. Gets me through the whole day many days. This might be an acquired taste but I love it.
  • Turmeric and pepper/oil on basically everything. Michelle is grossed out by it but I love it. That includes, soups, salads, oatmeal, stir fry, etc.
  • Workout a lot. That included track workouts, climbing (one evening/week with my friend Sean), strength training, etc. I workout most days fairly intensely.
  • Meditation/visualization. I’m not fanatical about this – walking in the woods counts. I would sometimes visualize the cancer melting away or otherwise being defeated. I would also visualize challenging scenarios (sometimes called negative visualization) considering worst case scenarios, often in vivid detail, toward getting myself present and appreciative for what I do have. And to prepare my mind for any eventuality. It’s not for everyone.

Things I consistently avoided:

  • No dairy (the occasional ice cream with turmeric turns out to be quite nice though).
  • Alcohol, though would drink with friends on occasion. Bonding trumps the negative effects of alcohol, assuming it’s moderated, IMO.
  • Low protein, almost no animal. I really cut most animal protein from my diet. For example I used to eat scrambled eggs for breakfast more days than not. They don’t work for me anymore. Fish on occasion. Chicken rarely. Beef almost never (but still if I feel like it). Overall my protein consumption is probably half of what it was before and I don’t feel any worse for it.
  • Coffee has been on the uptick lately after a big cut from what it used to be – my default is still mostly green tea.
  • I never was big into processed foods and sugar so that’s been a mainstay of my diet. Refined sugar is the enemy.

I think that covers most of it.

6 month scan results

Complete Remission!

I’ve been existing in this limbo state for a while. It’s been a particularly stressful day or so of waiting. Getting these scans has a way of making the abstract idea that one is sick much more concrete.

As I mentioned in an earlier post, the other day I was feeling down with all the future planning parents around me were doing. I held back from planning anything, all the while thinking, hmm, there’s a real chance I’ll be in treatment while you’re doing that awesome thing.

So I got the results yesterday. Kaiser sent an email. It wasn’t clear to me how to interpret what they sent over (I guess the lesson is when you train your doctors that you’ll go into all the details yourself they don’t even bother walking you through it!). Still I wish the medical profession, especially oncologists!, would give this event it’s due. Some people call it Scanxiety, and it’s real. You should not simply send a patient an email even if you’re busy, even if the news is positive. This requires some bedside manner. This is not the point and will be a totally separate post.

So I called them to follow up. The nurse told me that all is clear. There is no ‘metabolic’ activity. I was about to thank her for the news but realized I was choked up. I couldn’t speak. The tears exited my eye sockets and gravity dropped them from my face, pebbles. Then an avalanche. This wasn’t shock (shock has a way of blocking emotions). No, this was relief. It all spilled out and I couldn’t fight it. Didn’t want to.

In contrast, nobody in my family was surprised at all, including Michelle. I had been stressing over these scans for months. It was weird. Everyone said the same things, that I looked too healthy, was too positive. My perceptions offered a stark contrast. To me: (a) my back still hurts suggesting residual tumor, (b) periodic flutterings in my abdomen were reminiscent of what I felt previously (are the cells morphing?), (c) with months of distance from chemo treatment, those drugs are flushed from my body, so the cancer could take root. All reasonable, albeit speculative, over-corrective biases of a mind that’s overly attuned to bad news, I guess.

While I trusted the first scan result part of me really thought it was a fluke. That the real scan, the validating scan, is the 6 month scan, the one I just had. And for the first time in a great while it actually feels like I can REALLY get on with life. Like I’m walking out of prison. I now believe that I’m healthy.

Michelle and I did a date night last night to celebrate.

Whew.

I’m smiling more on the inside than in this pic.

Meditations while battling cancer