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.

The first day of school, my 6 month scans

Yesterday was a strange day. The sun was shining. Still feels like summer. It was Saul and Lev’s official first day of school: Lev to kindergarten, Saul to second grade. I mentioned in an earlier post that we’ve moved across the bridge to Piedmont. So we’re in a new home, a new school district and all is well.

Except that I also had my 6 month scans in that familiar trailer. The juxtaposition of normal/happy life with this disease is almost overwhelming. In the morning I was chatting with the other parents and sharing excitement about the school year, logistics about after school programs, enthusiasm about our teachers. Hours later, instead of picking the kids up from school, I was getting injected with radioactive isotopes. I sat quietly, doing my best to still the mind from the swirl of future-oriented thoughts. Not much else to do. The timing just worked out that way and I don’t really feel like changing it.

Oddly, the familiarity of this position seems like a kind of home base. As much as I hate this process, my relationship to it isn’t antagonistic. I know that if my results are bad that I’m prepared to fight. I’ve done it, frankly at this point it’s a part of my identity. Actually this state of purgatory is the most anxiety-provoking. I can tell its been affecting me, thought I don’t like to admit it. And my thoughts go out to the millions of folks that need to deal with this on a regular basis. It’s excruciating. I do my best not to let it control me but it’s clear there’s background anxiety eating up cycles.

I did a hypnosis session the other day with a friend who is getting certified in it (she’s a top notch psychologist in her own right and taking on new skills). It was actually quite powerful, not because she put a spell on me or anything like that, but rather she enabled me to go deep into my own memory banks with skillful guided imagery; helping me pull dusty memories from forgotten shelves. One observation that stuck with me, largely because it was visceral/kinesthetic, in which I imagined some challenging times in high-school. I thought about the anxiety certain situations provoked. And the incredible part was that I felt that emotion manifest in my abdomen, around the location of the tumor. I don’t think I’m reading into it but there is a connection there worth exploring. It’s an interesting practice.

All of which is to say these appointments, this whole process, serves as a reminder. I find value in it. I’m forcing myself to but I also deeply believe it. We are mortal and fragile beings. So are our loved ones. It’s easy to forget or it would probably occupy all our thoughts (we would not get much done). And so I don’t see this as a diminishment of my experience but rather as an enhancement. It adds value to my life in the form of imparting gratitude and helping me get present. Value is a function of perception.

I’m not sure the right way to approach this whole process. What I know for certain is that what matters is extreme honesty in going through this. It’s scary. I’ll deal with what comes. And I can’t sugar coat any of it.

Should get results today or tomorrow.

Schrodinger’s CT

That’s not a typo. I have my 6 month PET/CT scan coming up next week. I find myself existing in two simultaneous mental states: in remission or recurrence? Am I healthy? I told my doctor to get it scheduled asap. As much as I want to put this off (I really do) there’s really no sense in doing so. I need to face this thing head on. Thanks for the nudge to just do it Eli!

Last weekend I flew to Colorado to visit my brother Eli. We made good on a promise before my surgery in December to go camping when the ordeal was over. We climbed a 14k mountain, starting the day at 4:45am (ok, we started at 11.5k, but still!). It was great. He has a camper van that we slept in by the side of the road. I was pleased that there were no issues to report. This felt extra great given that I got altitude sickness going to Tahoe just a few months prior. So I’m feeling healthy.

Next week we’ll open the box and find out what the CT scan has to say.

Precious Cargo

What a shame to not fully bloom. Fear, apprehension, self-doubt cripple us. And they are an insult to our unique gifts. Because that part that wants to express is true, good and should live (even if the output is imperfect!).

Remember the morning demon that demands your review of the future day. It asks: would repeating this day be joyous, or miserable? That seems as good a scorecard as any in deciding what good one will make of the day.

Our days take on a rhythm. That rhythm might be inertia, based on days past. It might be twisted into a pretzel by the school or business culture. Or maybe it’s the rhythm of no rhythm, each day totally novel to bash routine. The day might be filled with wonder, or with trepidation. But whatever it is know that you have the space to change it if it’s not working. If it’s squelching the gift. Will you do it intentionally, or reflexively? Perhaps a set of rules would help.

  • if lethargic then walk
  • if overwhelmed then belly breathe for 1 minute
  • if indecisive then get action
  • ….

There’s an African proverb I heard from Jack Kornfield (a well known Buddhist teacher) in a talk he gave a few months ago:

Children are born with a precious cargo. It’s the job of a parent to help them deliver it.

The blockers to ensuring this happens are many, individual as fingerprints. But underneath most of them is a dampening of enthusiasm. How might we ensure that self-doubt, the (likely imagined) judgments of others, or anything else doesn’t creep into their psyches? Can you hear the brakes screeching?

If you’re a parent (even if you aren’t), try not to forget that you too are a child with cargo that needs delivering. A good way to ensure children can get there is to show them how. Let’s model that delivery process.

The path isn’t always this straight (taken in Whitefish, Montana)

A year since I was diagnosed

Here’s a quick update since it’s been a while and I’m getting the itch to write again.

There have been quite a few (great!) changes lately: I’m back at work; we moved the family to the east bay; kids are thriving. But I’ve also been feeling some uncharacteristic anxiety lately. I was attributing it to ‘life’, then it occurred to me that while all that is true the underlying reason is it’s an anniversary – a year since I was diagnosed (cancer is murky and these timelines are approximate; I had symptoms July 4 vacation then started chemo on 8/8). So this time last year I was going through a battery of scary tests to figure out what was going on. I have visceral memories of the uncertainty of it all. While I’m overall feeling quite excellent physically I do find myself often checking my abdomen, feeling for growth. Is that a lump? Am I cured? Am I fooling myself? The pangs of anxiety are good reminders not to take things for granted. This is a marathon involving both psyche and physique. These are not in equal proportion – for me at least the former is much more demanding. 

The thing that really stands out in reflecting back on the year is my support network. This was my unfair advantage over the disease: friends, family, colleagues, even strangers. I well up with gratitude and consider myself among the most fortunate men alive.

So if you’re reading this, thank you. 

3 buckyballs
Thank you!