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.
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’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.
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.
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.