As if a dream

Oncologist: Are you ok? Where are you?

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.

Counterfactual histories

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.

Stay vigilant

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:

Mental

  • 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.

Physical

  • Workout every day – whatever modality. It’s just hygiene, like brushing teeth. Not worth over complicating it with various fads.

Community

  • 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.

That work starts now.

The rainbow outside my door after getting the news. How appropriate – yes I’ll read into it!