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.
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.
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.
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.
Some of you have been asking so apologies for not writing lately…I appreciate the concern when folks ask if I’m ok…then tell me to write more! Truth is I’ve sat down many times in attempts to write over the past few weeks, only to find my motivation waning. I’ve been struggling a bit to figure out what to do with this blog now that I’m on the road to recovery. My goal is to continue writing (it’s highly therapeutic). So the solution I’ve landed on is to expand emphasis to meditations on other topics beyond the battle with cancer. It feels like an obvious extension of the blogs focus.
We’ll see how it goes. Here’s an ice breaker…
Today Michelle and I celebrate our 9 year wedding anniversary!
In those 9 years we’ve birthed 3 kids, finished grad school; bought a home, survived cancer, worked on and with many companies & schools; good times and hard ones. It’s not been easy but the long arc of it has felt rewarding and meaningful. I’ve always thought of this phase as ‘life building’. And turns out those first turns of the flywheel are always hard. Feels like now we’ve got some momentum.
And joy matters so much more than it ever did. What really inspires me about where things are now – in part thanks to the perspective shift that tends to accompany scary disease – is that I can step back, witness the fruit of our hard efforts, and think; wow, we did that! This morning I sat at breakfast with the kids and just enjoyed them for a moment. They do the work, I get to watch it unfold. Nice.
Michelle – to say I’m proud of you does a disservice to words. You are strong. You build communities like nobody I’ve ever known. You nurture our family. You cared for me in dark times. You notice and appreciate the small details in everything you encounter, providing our family life with meaning and light. What we’ve been able to do together over these years makes me proud of us. And we’re just getting started! It’s easy to forget all these things in the grind of life. Three kids, aging parents, me getting sick, and all the rest of it is not easy. Let’s make it a priority to enjoy this crazy ride to the maximum. And to make it meaningful. It’s important. Happy anniversary baby. I love you forever.
There’s a feeling in the air that I want to clean up all the old stuff. That includes things, habits/systems and thoughts. I’m knocking out the most mindless todo’s that I’ve had on my list for a long time: clean the office, the closets, ditch old clothes, maybe tackle the garage. Feels like I need to sweep around all the build-up from the past months. And it feels liberating. I’m going slow to go fast and this feels like an appropriate way to start revving my engine again!
Lev turns 5
It’s hard to believe that it’s been 5 years since that day. Lev was home birthed. It was not smooth. Michelle had what’s called back labor; think baby’s spine against mom’s. He had been oriented in a favorable position most of that pregnancy but turned last minute in the womb, and there was nothing to do but keep pushing.
Michelle had no anesthetics and the midwives really didn’t have much in the toolkit to support her. Neither did I. We were too far along to make it to the hospital so we hunkered down. I felt helpless to help and it was one of my worst fears – not being able to help in a situation like that. She was in the most excruciating pain one can imagine. It was traumatic. That was exactly 5 years ago.
But from this incredibly hard birth came this amazing child. Lev means heart in Hebrew. It’s a good name for him. He’s one of the most empathetic people I’ve ever met. He helped me get through my this hardship with the deepest compassion and tenderness I think I’ve ever known. He touches me to the core every day and reminds me of the special opportunity that being a father affords. The opportunity to nurture and bring these kids into the future is a miracle. Happy birthday, Lev!
Yet more on fear
What’s the right role for fear in modern life?
Sure, if the threat is real then go ahead and feel it. But fear misfires. Often. Anyway isn’t fear an intermediate step in the chain of survival instead of an end-point of it’s own? What I mean is fear leads to adrenaline/altered state, and that state change leads to action of some sort, presumably toward better survival outcomes over time; hence it’s conserved – fight or flee! The relevant question then, is what role does it, or should it play in our daily lives when (for most of us) 99% of the time there’s no actual threat to life or limb. We’re all dead in the long term so does that mean we should all be fearful about it too?
Useful to ask: what fruit might fear bear? If the answer is nothing, that it’s just a state we feel with no useful output then it’s probably worth swapping out for some better emotion. We should fear if the threat is real AND imminent. Else we should transform it.That’s easier said than done but still worth a shot. How? Can it be transformed into useful energy? Try to replace fear/anxiety with excitement to ‘get up’ for whatever it is that’s on the horizon. That’s easy enough to do when there’s a single event coming up. But how do you ‘get up’ for fighting cancer or for a chronic condition that’s always with you like a devil on the shoulder? It all starts with recognizing fear before we do something with it.
I’ve actually come to equate (my) cancer with fear. Or maybe it’s the other way around. In asking the question of which degrades quality of life more it’s actually not clear which is worse: cancer or fear?
One of my working hypotheses is that I’ve experienced a high amount of low-level fear and anxiety over my lifetime; that’s contributed to compromising my immune function, thus setting the stage for cancer to take root. To be clear I have little evidence for this causality but I don’t imagine much of a downside to believing it anyway (placebo!) and making some changes in support of that shift. Living without fear seems a reasonable bucket-list item, probably for most of us.
So what am I anxious or fearful about? I just got some amazing news! I’ve been thinking a lot about this lately. Oddly I feel I’ve been handed a precious gift in getting this cancer and I do not want to squander it. One part of that is it’s afforded me an opportunity to address fear (of cancer, and anything else) head-on, with urgency. I believe this is of vital importance toward keeping cancer at bay. I’ve spoken much about fear through this journey since it’s such a central theme in battling cancer – for anyone. I’ll take this a bit further in hopes that it’s helpful for others, and as a reminder to myself.
Should I feel self-conscious, fearful even, about sharing these? TMI? Maybe. But addressing fear starts with mini steps. Laying them out for others is an act of doing something scary. So I’ll go first and pay it forward in hopes that you too, reader, will also do something that makes you scared today!
And while these feel deeply personal, in-fact they are generic. They are instantiations of categories, variations on a theme. Fear is in all of us, part of the operating system.
I’ll list these out, something akin to Selichot (סליחות, loosely translated as apologies) that Jews recite as repentance for transgressions. These are done with a light ceremonial fist punch against the heart. I’ll call it the fears (but it sounds better in Hebrew, The Pachadim, הפחדים).
So, the fears:
fear of taking more than I give OR the fear of forgetting:
I’ve been shown such love and support, and been given so much that I don’t want to forget and move on. And I certainly don’t want to lose the momentum of dealing with this to start all over. It’s a hard headspace to occupy, that of fighting cancer – as anyone that’s been through this ordeal would attest. But I hear plenty of stories about recurrence, specifically regarding follicular lymphoma. The odds of recurrence are high but over what timeframe is not clear – is it months, decades? This experience has changed me and I’d be remiss if I didn’t reflect and integrate some updated habits/systems into my routine to ensure that expanded awareness and focus on giving remains accessible amidst the insults of daily living; I want to quickly rub my sleeve against the dusty buildup of the day and access that polished state of awareness. Also, this fear is related to the fear of judgment (below) in that we live in such a high-stakes environment that it’s easy to turn our focus inward on ourselves and lose sight of others.
SOLUTION: (1) Adopt mindfulness practices e.g., meditation, yoga, being with nature, etc. to stay grounded; (2) Give back! Contribute & support people/patients going through hardship.
the fear of being judged by others (inadequacy)
This is a biggie. I could label this the fear of not being good enough, or imposter syndrome. Sometimes I don’t care what others think – in fact that’s my natural state. Generally I don’t care what people think. Until it matters and I feel I’m being judged (which is compounded by me judging myself more harshly than anyone else ever could or would – it would just be mean). I’ve valued independent thinking and not giving much of a shit what others think. That’s when I do my best – when I have energy-plus stemming from a focus on outcomes. With that the ‘people in the room’ become fuel stoking the fire of positive outcomes versys draining fuel in unnecessary mental overhead in the form of recursive judgments (what I’m thinking about what they’re thinking about what I’m doing etc. – have you ever been there?). Of course I’m judging myself more than anyone else is – such is life for perfectionists. I don’t do well when I’m focused on myself – most of us don’t. Things are better when I connect and charge with larger contexts and outcomes that extend beyond my small self. Optimal performance comes when I get lost in the work and the joy of the doing it, flow (vs. over-emphasizing how things might be perceived, what’s called ‘optics’, they matter sometimes, but not much).
SOLUTION: Identify and surround myself with energy-giving vs. energy draining people/contexts. Bias towards situations where authenticity isn’t something to be cast aside but rather celebrated over posturing (what I try to do in my writing; and why silicon valley tends to be a great place for independent spirits).
fear of not making my future self proud
God made each of us for a reason; it’s our job to find that and do it. There’s a saying that hell is to die and meet the best possible version of oneself. That gap is suffering; the pain ofwhat could have been! So strive to minimize that gap. This is another way of saying opportunity cost.
Also, I hate repetition but I love routine. It’s not as weird as it sounds. To my mind repetition suggests no growth (in tech we have a mantra called DRY – don’t repeat yourself!), like you’re an animal that can’t learn. Routine, in contrast, is a scaffold we build (using our big brains) to support our growth. The fear is of NOT growing, of being left behind in repetition while others around us grow. Maybe a bit esoteric but I think of it like: fomo => fomoog (fear of missing out on growth)
SOLUTION: Be confident that the future is hopeful despite the inevitable hardships. Remember we only see a small piece of reality. Enjoy being on the steep part of the learning curve and meet hard things head-on. If you do things with the right motivation (know your ‘why’) then aiming high is easy!
fear of insufficient means
If I were to step outside myself and the bubble of good fortune in which I live I would be quickly reminded that we live in a time and place of great abundance, with greater means, prospects, good fortune etc. than have the majority of humans through history. There’s a saying (I think from the Rebbe) that resonates: He who has enough to sustain him for the day but is apprehensive about the morrow is considered to be wanting in faith. For me it’s about creating that desired future with force of will/certainty versus building a wall to to ensure all is protected.
SOLUTION: Mindset shift of abundance over scarcity.
fear of recurrence
This news of remission does not erase the fear of cancer. Paradoxically if not heightening it, at least it’s morphed. Why? Maybe because the scary monster has moved into hibernation – what you can see is less scary than what you can’t. I suspect that’s why the movie Jaws worked so well: fear was something sub-surface, rendering it more frightening because it’s fueled by the imagination(archetypes and all the Jungian stuff), a machine that is nothing if not great at concocting-very-scary-shit. What’s interesting to me is that it’s not quite dying that scares me so much as not living well. Fear of not leaving a mark, enjoying myself fully, or doing what needs doing from this tiny vessel of mine is all wasted opportunity and that’s where the fear resides, in living sub-optimally.
SOLUTION: make what I do deeply personal and resonant with meaning (whatever it is I’m doing) and love it/find my way in. Or, better, burn that shit bright! No regrets. Note the opposite is to live for the money so you have security – blech!
Using fear as a tool to optimize outcomes (a feature of the operating system, not a bug!) comes in 2 parts. The first is to understand and classify the fear type. Second is understanding the right thought to replace the fear with, that will come with reps. Finally, understanding what emotion to replace the fear with (unless the fear is helping). Generally I’m finding that enthusiasm or excitement is a better way to handle fear and anxiety. So it moves from useless into useful energy; fear/anxiety => excitement.
I now have 4 aligned oncologists all in agreement that I’m in complete remission. It’s not clear how this happened. There are several competing theories that I won’t go into here for purposes of brevity. I think the most likely explanation is that first line was effective in killing the scary stuff. Then, by some mechanism, my immune system got a boost and pushed follicular cells into remission (possibly by recognizing, and subsequently weaponizing against proteins that were released in the massacre – it’s all speculative). I wish doctors were willing/able to dig into the post-treatment details to really understand what happened but retrospectives like this seem to be a casualty of warfare.
There is loose agreement on the monitoring schedule. At this point it stands at 6 months for the next scan. UCSF suggested 3 months. Stanford suggested 3-6. Dana-Farber suggested 12 months or whenever I feel symptoms. I pushed back on UCSF suggesting that taken together the combination the false positive rates, radiation exposure, and general anxiety of waiting for these scans were all good reasons to hold off longer, 6-12 months. No issues as there are no hard/fast rules for my situation! Also, Stanford suggested that blood tests are coming online soon, at least for dlbcl (the scary type) which makes me want to wait as long as I possibly can in hopes of that technology coming online.
To pull on that thread a moment, through my network I got connected with a company called Natera (thanks Alex!) that have consumer blood cancer detection tests in development. While it’s still for research use only and only validated for a handful of solid tumor types I jumped on a call with them the other day. It’s obvious they are still in early days. They are currently running a trial to validate other cancer types. I’m leaning towards joining this trial because in part because it’s just a blood draw so no big deal for me (assuming there’s enough biopsy tissue to share). More importantly I would do it to get them get more data to support follicular lymphoma detection. Maybe it’s a small way to give back – even if the data is too noisy/inaccurate to use for my own clinical diagnostics (that is, I’ll still need to get the PET/CT scans for any diagnostic decisions).
In a nutshell the way it works is they match up tumor DNA (taken from the biopsy tissue) and match it to DNA that’s ostensibly shed from the tumor and that circulates in the blood. They have algorithms to look at sensitivity levels and mutations to draw conclusions re: progression. This would be particularly useful for Follicular Lymphoma as the nature of this disease is that it waxes and wanes. And a blood test would obviate the issues mentioned above with scans and would (in theory) have a higher sensitivity, meaning they can see circulation of tumor DNA in the blood months faster than a scan would pick it up.
I’m constantly thinking and reminded about how much access I have. I do my part as a patient and advocating for myself, but to be perfectly honest if I didn’t have access to the doctors and network that I do then it’s clear my advocacy would have been a much lower-leverage activity. I would almost definitely be in a much worse position.
It’s so easy to lose sight of the fact that so much of our circumstance is dumb luck: shit fortune for getting cancer; good fortune to have resources to fight it well; dumb luck of the PET/CT coming back clean. I have no idea how can we level the treatment field but it seems an important activity for us (humans) to consider with an estimated 2-3 billion more humans coming into being within then next 50 years?
What if I couldn’t afford to pay out of pocket for 3 separate opinions?
What if I didn’t have the time to dig into all this research (I barely knew what lymphoma was a few months ago!) to nudge the direction of treatment?
What if I didn’t know the right people to talk to? Or have the network to connect with the best oncologists at the top hospitals in the bay area? Three of the four oncologists in my panel came through my connections.
What if I didn’t have such supportive colleagues supporting me through my journey?
What if my wife Michelle, kids, and broader community weren’t so amazing?
Decompression (in pause)
I’m exhausted. My tank feels depleted. My back still hurts. I’m building back up slowly but I’m letting my body tell me when I’m ready to move ahead with life. I’m in pause.
The top question I’ve gotten over the past week is some variant of: “…are you feeling elated”. Actually, no.
Viscerally, it feels like I’ve run a marathon. Metaphorically, it feels like I was thrown off of what I took as a sturdy ship into the roiling nighttime ocean. I was tossed around in freezing water of uncertainty for months. Then – miracle! – I’m heaved onto the shores of some anonymous island. The constant motion of bobbing on waves has given way to the stillness of land. Instead I feel like I can barely move as I think: what the hell just happened? where am I? Is this stable? what’s next?
I’m picking up the pieces back up and I’m trying to be methodical about how I do that – slow and steady. If you’ve reached out and I haven’t gotten back to you please don’t take it personally!
I’ve been spending time with the kids. For example hanging with Lua in the backyard one afternoon. We just sat in the bench under a large spruce tree. It was heaven. Seriously, for the few minutes she sat kind of still, her tiny body in my arms, I was flooded with gratitude for just being and not doing anything. I’m wired to do and it’s nice to NOT do for a bit, to just be and let things sink in. It’s happening slowly and I’m not rushing anything.
I’ve never been to burning man but all my friends that do go spend a week in ‘decompression’. Observant Jews have been resting on the Sabbath day for a long time. Not sure the science behind 1/7, but 14% seems reasonable. Modern society has implemented a version called screen-free Saturday; same thing, new marketing. In all cases there is a period of intensity followed by pause/reflection. I’m sure there’s some good studies of which I’m unaware suggesting the benefit of decompression but I haven’t researched it.
For now it’s clear that my mind is screaming at me to rest and recover as I take in the new vista.
Ari: (panting) Sorry. I’m out of breath. I just ran up a hill. You’re calling 20 minutes late and I was getting really anxious – had to burn some energy…
Oncologist: Well I have your PET results. Excellent news. The scan shows there’s no metabolic activity at this point. Keep running up those hills.
Ari: (dumbfounded, stunned) …What?
Oncologist: Yeah! Congratulations. You should be very happy.
Ari: (dumbfounded, stunned) …how can this be?
Oncologist: Well I don’t know. It could be that we didn’t wait long enough on the last scans and the drugs were still working. They must have still been in your body and there was activity still happening. There’s still tissue there but it’s not active. It’s an amazing result.
Ari: (dumbfounded, stunned) …So…you’re saying this is complete remission?
Oncologist: Yeah, right! That’s what I would call this.
I collapsed onto the sidewalk. People on their phones were stepping around me. I took in the news – disbelieving. I told him I had so many questions but didn’t want to ask them right now. I wanted to let it sink in.
As I’m writing this post I still don’t believe it. I called Michelle. She started crying: a pause, then “come home now”. I lay there for probably 10 minutes, staring at the naked branches of a tree above against the grey sky. I melted into the sidewalk, hands on my head. Just staring.
Let’s consider for a moment how things would have likely played out had I gone through the original recommendation to push ahead with standard second-line treatment. Recall that I had 3 oncologists aligned on this path just weeks ago.
Well, I’d have started in January with 2 rounds of harsh, platinum-based chemotherapy. Roughly 9 weeks later I’d be doing the scan (that’s about now). And assuming the chemo didn’t worsen anything, that scan would have shown complete remission. And we would of course have attributed success to the second line chemo! And since remission is the signal to proceed to the second part of treatment – the autologous stem cell transplant – that’s exactly what I’d be prepping for now. That’s another 3+ months treatment, assuming it worked. I’d be commuting to Stanford most days, or staying in-patient. I’d definitely be neutropenic, likely experiencing complications (as seems almost inevitable with that procedure), and probably not seeing much of my family with all the logistics. I’d have inflicted an incredible amount of damage on my body.
Only to be right where I am now.
Not just that. I’d be another data point thrown into the pool suggesting second line treatment is effective, nudging the broader treatment decision space just a bit in the wrong direction for the next person.
I’m forcing myself to contemplate this and it’s hitting me hard.
I still have this nagging thought that something in my psyche set the foundation for the cancer to take root – toxic soil of the immune system? A positive scan should not be a signal that it’s ok to let my guard down. In fact it’s the opposite – I feel compelled to double down on whatever I’m doing, to remain vigilant in guarding against slippage to old habits and routines.
In terms of how this could possibly have happened all I can say is, who knows. My primary oncologist thinks the chemo was still working after the scans. Maybe – I think that’s a convenient narrative. I spoke to another doc on my panel a few minutes ago and she mentioned that spontaneous remission is rare but it does happen. It’s not something she would ever offer to patients as an expected outcome (she said she’d want to study me from a medical perspective out of her own curiosity), but there’s no reason not to believe the PET scan. False positives can happen but false negatives aren’t a real issue with these tests. Most likely is that it’s spontaneous remission of Follicular 3a cells. Mechanisms for that remain unknown.
My view is it’s a confluence of factors that led to the cessation of activity. I also think it’s probable that it was a combination of factors (not just genetics) that led to the initial growth. No, I’m not exactly blaming myself for getting cancer. I am suggesting that perhaps my system wasn’t properly tuned to handle a genetic predisposition. I don’t find this narrative dis-empowering, that my psyche may have had something to do with, say, activating some genes that would have otherwise stayed quiescent. Quite the opposite.
The illusion of control can help in these kinds of situations. And conversely a perceived lack of control hurts. Indeed, if it feels like all control resides outside of oneself, that’s just a quick hop to learned helplessness, a liability when battling cancer (those rats fare worse than control). The immune system is like another brain that we aren’t close to understanding yet. So that requires picking up weapons we may not fully understand how to wield!
Since it tends to come up a lot in conversations I’ll thumbnail sketch some of what I’ve been doing (with little to no detail as I don’t have the time here). Maybe I’ll discuss in more detail in a later post if there’s interest. What I can say is I was pretty methodical about making specific changes since chemo ended, some prior. I can only speak to what I’ve been doing and make no claims about efficacy of anything specific. Those changes in combination may have had no effect, or they may have been essential. It’s clear that they didn’t hurt. Take this for what it’s worth, n of 1. With that:
Focus on mindfulness, meditation, being present. Still a work in progress but a big area of growth for me.
Be positive. It’s a bit like that trick of biting the pencil to force a smile. It actually is shown to elevate mood though you’re getting there from the outside-in, mechanically so to speak. At no point did I feel despair. I worked hard to make this so.
Nutrition. I should say at the outset that when it comes to nutrition, that nobody really knows. There’s so many competing theories, and such a scarcity of compelling data to support most of it. Also, few folks ever bring up the obvious point that all nutritional advice may not be right for everyone. Taken together it seems likely that (at minimum) our divergent genetic, epigenetic and gut bacteria profiles play a significant role on our individual metabolic output. This is a separate post for sure. It’s worth bearing in mind that the placebo effect is strong and real. So nutrition may fall into that bucket. But the beauty is that it may not matter! Even if you knowingly take a sugar pill to help some ailment it still can work. I wouldn’t rule that out. Anyway, I’ve implemented some practices into my lifestyle that have at least a modicum of data supporting them (and that literally, pass the smell test), specifically:
Intermittent/fasting until noon, and no eating after 8pm. The idea is to reduce the feeding window to 8 hours/day to limit supplies to the ‘cancer army’. Some rat models suggest this has an anti-tumor effect. A less fancy way to say this is that I skip breakfast. I’ve fasted a few days for 24 hours but haven’t gotten carried away.
Sip green tea (all day) – 5 cups minimum. Steep it ’til it’s bitter (8-10 min) to release all the catecheins, especially the most potent one called EGCG. Note that other teas, (e.g., black) are less helpful due to effects of oxidiation.
Lots of turmeric in food (sautee in olive oil, black pepper activates).
Eat more vegetables. Lots of stir fry including cabbage, carrots, garlic, tomato. Lots of shredded cabbage-based salads.
Eat less protein than usual. I think I require less than I did before. Following my body’s lead here. I mostly skip protein at meals if I don’t crave it. Used to think I should always have it in meals. Nonsense.
Pescatarian diet and minimal dairy (if so, high quality cheese). Some studies positively link dairy consumption, meat with lymphoma. I’ve eaten a bit of meat if my body felt like it needed it, once a week if at all and mostly Friday night for Shabbat. No harm done.
Consume minimal white/refined carbs and close to zero sugar. This one hardly seems controversial. I will buckle for butter croissants though.
Overall I’ve been eating less. I don’t feel worse for it. In fact I feel better.
Workout every day – whatever modality. It’s just hygiene, like brushing teeth. Not worth over complicating it with various fads.
I haven’t spoken enough about this. I’ve gotten so much positivity from all sides that it’s hard to believe all that energy didn’t help. If I had to pick one element only and point to that as the cause of this outcome this would be the one. It’s all about the people and the love. That’s what matters in the end. It’s unfortunate that it sometimes takes an event as horrible as cancer to deepen bonds between us. But it’s better than not having it happen at all. I feel blessed.
What’s next, how am I feeling?
I’ve been very clear to de-couple my emotions from outcomes towards maintaining emotional stability. That’s been essential to my well-being. But it works both ways, buffering the highs as well as the lows. I kind of wish I felt elated. I don’t feel all that much just yet. For peace of mind I’ve already left messages for the remaining members of my panel of oncologists to ensure we’re all aligned.
For now I’m letting this soak in and taking some time to process. It doesn’t feel real. For all the thought and considerations about battling this thing, I haven’t allowed myself to go to the other side, to a place of being healed (or whatever you’d call remission). It seemed too out of reach.
So was 10 days in Hawaii relaxing?
Kind of. If you think it was sleeping in and pina coladas on the beach all day you’ve got the wrong idea. We definitely had lots of quality downtime with the kids, which really was the main point. Still, 10 days with 3 kids and no babysitter or school does not produce a beautiful tan (the chemo is likely still lingering in my body so I was vigilant about limiting my photon exposure anyway… I was the guy with long pants and running jacket on most of the time). But it was a necessary pattern interruption on the ‘big C’ and we did it the right way – no regrets. I think the kids really enjoyed themselves. I know I did.
It’s done. I had the scan yesterday afternoon. I expedited the schedule by a few weeks to coincide with my return. The outcome will determine whether I’m headed back to treatment right away or not. I’ll find out results today or tomorrow.
If the tumor is not progressing that will be a strong signal that indeed we’re looking at Follicular lymphoma and that (I think) it’s somewhat stabilized. It’s a bit odd to think that’s what I’m hoping for, but given a choice I’ll take an immediate future of ‘watching and waiting’ over some of the treatments I’ve lately been contemplating. Regardless I’ll circle back with my panel of docs to ensure alignment, especially if the scans are anything but super clean.
When I arrived I pushed for an answer as to why this time we were doing a ‘whole body’ scan (as the order indicated) versus what I had last time which was ‘eyes to thighs’. It’s not a big difference from a radiation exposure standpoint but more a question of principal. Why the difference? Anyway I was able to get a hold of the oncology nurse before going in. Her explanation was that because I’m now post-treatment they order whole-body. Good enough – at least it wasn’t an oversight.
While pushing back for an answer I got to talking with the tech that was running the equipment. I was asking more details about radiation exposure. The last tech I spoke with indicated the radiation exposure from a PET wasn’t especially high. When I mentioned this the tech laughed that this was ridiculous. So I asked if he had any way of putting these various scan types all together as I haven’t seen a clean comparison across all procedure modalities? He did a few minutes of searching and showed me exactly what I wanted to see in a handwritten table on his phone. I copied the values and cross-checked them. Here’s a table breaking it down. I normalized against some common benchmarks: the number of dental x-rays, flights across the US to put it in perspective. You can see the top row shows PET/CT as the equivalent of living 8 years in the US, taking 5k dental x-rays, or 800+ flights across the country.
As we got talking further I was horrified about a story he told me. To summarize there was a PET/CT center in southern California in which the amount of isotope injected into patients was consistently 30% too high – and this happened for several years. Concerning as the radiation exposure would be, the real issue was that tumors might show as more active than they were, which could be interpreted as showing more progression than actually existed! Sometimes you just don’t want to know how the sausage is made.
With that he left. I sat in dark silence for an hour as the radioactive isotopes penetrated my cells.
How do I feel?
Truth is I’m less worked up about it than I would have thought – despite that I can almost already hear my oncologist on the phone delivering yet more bad news. And I’ve still been having nightmares – different forms each night since before leaving for Hawaii. I won’t bother going into details but to say that in some I emerge victorious, others end inconclusively. These are clearly the subconscious processing of a mind grappling with high uncertainty.
Still, for some reason I’ve been feeling optimistic about things lately – regardless how the scan goes. Not sure I’d call it faith but I certainly don’t feel like a helpless victim. I believe that focusing within my circle of competence has been helping allay many of these fears/anxieties (sketch). I’m getting better at explicitly identifying where energy expenditures are helpful vs. useless.
One goal of mine is to break in new patterns of being and commit them to habit. I’ve started to think about my immune system as a child I need to care for (and what’s one more kid at this point!). I’m trying to be intentional about coddling it because it’s fragile and I’ve perhaps been unkind to it. Hawaii was the tip of the spear on this path.
If anxiety has a negative effect on immunity – and I think there’s sufficient quantitative/qualitative data suggesting this is so – then it’s worth asking the question of what causes anxiety. When I put this question to myself it was clear that thoughts cause stress. That seems so obvious when in black and white; it’s not the event itself but the thoughts surrounding it that cause stress. Thomas Jefferson said almost 200 years ago:
How much pain have cost us the evils which have never happened?
So which thoughts specifically? For me it’s future-oriented thoughts, e.g., What might happen, will the scan be good or bad, how bad is this diagnosis? etc. Anxiety for me is about getting caught up in scenarios, “what if’s” and ‘should’s‘. I have this tendency to observe scenes in the third person, objectively as a bystander. If nothing else it’s a pleasure blocker. So what’s the solution?
Be present. Here. Now!
To be present is to circuit-break anxiety. I don’t think that being truly present can co-exist with anxiety, in the same way that you can’t simultaneously hold multiple conversations at once. If I’m grounded in the here and now then none of that matters. When I feel the sinking feeling of waiting for this test I try to bring it back to the present moment. I’ve heard this so many times, to focus on the breath etc., but only on this trip did it actually sink into my bones.
There was a moment on the last day. I decided to get out of the house before anyone was up while still dark. I went for a jog beneath a crescent moon peaking out from behind silver pre-dawn clouds. I was running alongside the ocean along Kauai’s perimeter, an ant edging a jar lid. I stopped and looked out, taking in the magnificence. Truly paradise. I looked out over the black rocks with the type of deep stare I get when totally immersed in a thing. I would do it as a kid all the time. When your eyes find a focal point it becomes clear how energetically expensive eye saccades are. The focus was slow, deep and constant. I stared for a long time and felt one with the scenery; nature looking on herself. I was simply the observer to that exchange. Peripheral events didn’t matter – a truck in the distance, morning roosters, etc. Another word to describe it: absorption. Nothing really happened in that time but to say it was obvious this is an optimal state of being and one worth actively cultivating.
That kind of awareness is like focusing the sun’s rays to a single point to light a fire. In this way being present seeds a positive feedback loop that leads to seeing -> to knowing -> to loving -> to calmness; and back again to being present. It’s taken me this many years to really get it. I’m still working on doing this more and infusing it into my daily life to the highest degree. I see cultivating an ability to turn it on like a switch as a worthy, life changing challenge. It’s been really interesting to play with this, like a new brain gear.
One good gut-check I’ve been doing each day to find out if I’m actually present is with washing the dishes (or whatever chores). When I’m present it’s meditative. My future-oriented/anxious/distracted self tends to dislike chores like the dishes because (I think) I should be doing so many better things. But not really. The best thing to be doing, is the thing right in front of you. Right now. Fully and with love.
Every morning for the past month I’ve gotten out of bed feeling like I was beaten. My back takes a very long time to feel close to normal. I’m constantly stretching and twisting it waiting, hoping for some vertebrae to pop into position. Regardless what the cancer is doing (something, nothing) there is still a tumor behind my intestines the size of a tangerine. I have to assume that is the root cause. I did a week of yoga to test the theory that perhaps it’s muscular, but there’s really no change since then. Yoga is great but only if I’m in the right head space for it (like listening to Pink Floyd), I basically spend the entire time wishing that Shavasana (or, “corpse pose” in English, typically the last pose in a class).
Also as of a few days ago I’ve noticed some fluttering in my intestines on the right side. It’s not painful but perceptible. Impossible to say if it’s related but I’m on high alert for anything untoward.
Finally, I went to the doctor for my toe the other day. She said I could cut half the big toenail which would be about 5-7 days recovery, or I could just wait it out. I wasn’t going to do it. Nope, going to Hawaii without a big bandage on. I agreed to bring antibiotics in case it got infected on the trip.
It’s a marathon, that never ends
I’ve run the Boston marathon 3 times. I’ve been reflecting on those races lately. Specifically about how I approached them, untrained as I was. This is not a complement by the way, but a critical observation. In 67% of them (2/3) I put my head down and just did it. I ran smart races but there was nothing to savor in them. If I’m really honest with myself they were hardly memorable.
I attached to the goal and a time outcome and that was it. I’m too good at suffering through whatever it is I sign up for. In that regard being overly disciplined is a character flaw. The only time I remember much of that race was the one I ran poorly. I had shifted strategy midway, from a time goal to an experience goal. The reason was that I started the race too fast and blew all my energy, bonking hard around the 22 mile mark. I walked for several minutes (unheard of!) to see if I could regain my composure. It was that or quit and I was desperate. So, with the time goal out of reach I focused on enjoying the race and noticing things around me. There was a smiling kid on the sideline cheering me on. He was enjoying the race. I figured I was actually running the race so I should do the same!. And I did. One question planted in my mind then is how to move performance and pleasure to the same side of the ledger. I’m specifically talking about the times where things are pushed to the edge of one’s ability (note: pleasure and performance co-exist just fine within one’s comfort zone). Here, how can I battle cancer while enjoying the process? It’s like a koan.
The solution? Love is the bridge. If you must do it then you must love it. The approach I’ve taken is to find a way to love the process, hard as it is. I’ve decided that for now writing is the best tool available so I’ve been using it to explore this terrain and share the experience. It’s been working reasonably well thus far.
And there is no real finish line. Yes, we have milestones but then there’s another one after that. The end becomes the beginning and the end – looping through an infinite yin/yang symbol – until it stops. So I’ve been trying to stay aware that while the upcoming scan is a milestone I shouldn’t fixate on it. While the outcome here matters (understatement) – it’s the difference between going back to work I love, or back into treatment – I’m trying to remain equanimous about it. I don’t control the damned outcome so energy going outside that perimeter of control is wasted. When my attention drifts outside that perimeter I pull it back in. I’ve gotten so many reps in that it’s almost becoming automatic; drift and yank.
What’s the value of more?
The other night I met a prominent CEO/founder friend for a drink. His company is running out of runway quickly and he was working 18 hour days trying to get funding. We remarked on how our situations felt stressful, stemming from uncertainty – NO!, stemming from uncertain outcomes with known timelines. By necessity our ego has built up various biases that provide a balm of certainty. The big difference is not so much that we’re actually living in more uncertainty than others (though we may be), rather it’s our heightened awareness of the uncertainty – it’s right in our faces. It’s a key distinction.
So I suggested an odd question we both found interesting. In fact, we both thought that if we had a single question to ask this would be the one. What’s the value of more?
Isn’t it implicitly obvious? More days, years of life, or of business runway is obviously better than fewer. Ok, why? If you pull on the thread it’s hard to come up with a logical answer. Just because. Why life? Just because. Ok then. More is better and thus we should be sad that our lives (or business lifetimes) are not infinite. Indeed we should prioritize longevity above all else. QED, right?
Maybe. But a better argument hinges on the idea of compounding. Why is living longer better? Because you can do more good in the world. Actions and decisions filled with goodness can compound the good in the world and reduce suffering. And conversely evil can amplify, Hitler lived too long.
So, do more good. How? Here’s a non-exhaustive set of possibilities:
Have kids. Those kids will perhaps go on to have kids of their own and so on. I often look look at pedigree charts or family trees to convince myself of this power.
Spread kindness. Kindness compounds – kindness begets more kindness, rendering the world less scary.
Be better, do more. If one is a parent it could mean being more present and aware to raise kids more likely to to do more good of their own. If one is a manager it’s being a damned good one. If one is a friend/aunt/cousin/son-in-law – then do more. You are a mighty lever impacting the lives of your loved ones or subordinates.
Doing good compounds our existence, providing a clear answer to the question of “why more“. Being awake, aware and intentional matters as it helps us be positive models for others and reinforce the idea that the world is good. Call it the case for the Mitzvah (מִצְוָה, good deeds).
I booked these tickets to Kauai on learning I have cancer last year. It was my gift to myself and my family for completing 6 rounds of chemo. I didn’t say for beating cancer. The key point is the celebration was de-coupled from the outcome. I can tell I’ve matured because the younger me would think such an idea misguided. The younger me would have been ferociously planning and saving money etc. if the outcome was poor. He would be willing to trade his own experience and suffer through whatever it took for an outcome.
Screw it! It feels indulgent, but if ever there was a time for that now would be a good one. So I splurged. Did I need to book the presidential suite? Yes I did! There’s a time to scrimp and save. Now now. It’s about memory making. If you’re going to commit then do it right.
Mold grows everywhere. Nothing is perfect. Experiences don’t exist in isolation, for us to plug into like modules. There is no party that’s objectively good or bad but what we bring to it makes it so. We don’t just show up places to have ourselves magically transformed. It’s our intention and mindset that matters.
The plane ride to Kauai was pretty stressful. Lua was like a little animal out of her cage the whole trip. Kids were acting up, acting spoiled which boils my blood more than anything – I will not tolerate raising spoiled kids! I was getting stressed. Once we arrived the kids were hungry and generally intolerable. Not sure if I mentioned that I got my phone glass fixed about a week ago after having dropped it (in a moment of clumsy non-awareness) on getting the news that I still had cancer. As I was getting the kids into the rental car, multitasking while holding the phone I dropped it – literally onto a bed of sharp rocks – smashing it yet again.
But in a way it was great, seriously! I looked down utterly bewildered at my stupidity. I was reminded about my tendency to focus on doing over being. That outcome was a function of pure inattentiveness. Every time I now pickup the phone, covered in packing tape to keep the shards intact, I’m reminded to be present. Yank!