Lessons I’ve learnt after having cancer (for the 2nd time)

A bit of background: Earlier this year I was diagnosed with a fairly uncommon subtype of Hodgkin’s lymphoma (Ie. Lymphatic cancer). This has now been the second time this has happened (with the first one being in 2002).

Having now being told the cancer is in “complete remission” and as I finish my chemotherapy regimen, I wanted to share on paper 5 thoughts I’ve had throughout these past months.

I write these 5 “thoughts” primarily for myself, as I find it therapeutic (brings closure to this process). However, I also share them for two reasons: i) Because “publishing” them has been a helpful driver in terms of sharpening these ideas. It has forced me to interrogate these thoughts and beliefs ii) Because it might be that they may be of value for others. It goes without saying that these are my personal views, and I do not believe them to be an absolute truth of any sorts.

Most of these points are not directly linked to cancer per se. There are far better resources on cancer as a subject, and there’s little I can add to the table. Instead, many of my points are more general in nature, and applicable to many scenarios.

1) I hate the “Winning the battle against cancer” narrative.

I realize I said that these thoughts were mostly not cancer specific, and yet I kick it off with this. I guess I need to get it off my chest.

I hate the “Winning (or losing) the battle against cancer” narrative.

Why? I really struggle with the implication behind it. Do we truly believe that those people who die to cancer lose? Does dying mean we are losers? If so, spoiler alert: We all “lose” in the end.

I’m appalled to see so many people use this figure of speech. I realize that many might find I am knit picking on semantics, but I believe there’s something deeper at play here. Aggression and anger are great short term fuels, but they get consumed quickly and leave a toxic trail behind them

Furthermore, if you think about it, as a general rule cancer is not a “foreign element” that invades our body, but instead something that is generated within ourselves, by our bodies. Obviously there are external factors that can increase the likelihood (eg. smoking, radiation, etc), but ultimately, cancer is a part of us. And I struggle to believe that the road towards to healing is one paved with feelings of aggressiveness towards oneself, no matter how distorted or negative this aspect of us (cancer) might be.

Also, defining “winning” as getting cured is too results oriented for my taste. Does this mean that there is no winning for those who have to live with a disease/chronic condition? How harsh is that? While I do believe “Winning/losing” are poor figures of speech to use, there is a lot of “fighting” associated to cancer. More on that further below.

Selfie before my first biopsy (of 3)

2) On biofeedback and visualization

I’m a firm believer in what some people call “biofeedback”.

To be clear, I don’t see “biofeedback” necessarily as a one way “causal link”, where the mind controls/influences/impacts bodily functions directly. I find this approach somewhat dangerous if you go down that rabbit hole, as it can ultimately lead to notions of fault/responsibility/guilt when it comes to sickness. These are notions which I believe are not only wrong, but more importantly, unproductive once you are facing an illness.

Instead, I think about biofeedback as a Moebius strip. A constant feedback loop that goes back and forth between mind and body, where it’s hard to say where one starts and the other finishes.

In case you’re wondering what a Moebius strip is. A one sided strip which creates an optical illusion. Photo copyright: David Bennbenick

Which in turn leads me to the power of visualization. Visualization as a form of meditation has tremendous potential. I used it both times I faced cancer, and it helped me tremendously in terms of coping with both my pains as well as my fears. It was both useful as a means for the body to “explain” to the mind what it was going through, as well as a tool to harmonize mind and body, particularly in the face of pain and fear.

A necessary condition for “meditative” visualization is these must be constructed in the “present moment” rather than in the future. Ie: Focus on my body healing, rather than being healed and healthy. Many forms of visualization are forward looking (Eg: Visualize yourself landing a great pitch/closing a deal/playing a great game/etc.). While I believe these can be helpful tools, I don’t classify these as meditative visualizations. Meditative visualization requires you not only visualize something happening but also to experience it. Hence, this need to feel something as part of the meditation rules out “accomplishment” visualization.

As the name says it, it is important to create visuals. If for example, you want to use it for stress relief, you will need to create a mental picture of the stress, and how this is dissipated. Just “feeling the stress being released” is not per se a visualization. It is a very personal process, and therefore I hesitate to speak more about the specifics of my visualizations. Not because I want to be secretive, but because I believe everyone has a different path to follow in this sense.

I have only two pleas: If you haven’t tried this — consider exploring it. And if you have, and it works, don’t drop it (I already did this once and now I greatly regret it).

3) Being a pessimist is not a scalable approach to life

Throughout life I’ve swayed greatly between being an optimist and a pessimist. I was probably more of a pessimist growing up, until one day I flipped a switch and became a very optimistic person for a number of years. I believe that throughout the last 5–10 years I’ve swayed back into a (slightly) more pessimistic than optimistic stance.

To be clear, I don’t mean pessimist as in “doom & gloom”. On the contrary, I think this “pessimism” has been incredibly useful throughout many aspects of my life, where I’ve often been told that I “always have a plan B” and seldom can be “caught by surprise” as I’m very thorough at scenario planning.

The issue with this “scenario planning” approach is that, while it has proven very useful in things like my professional life, it just isn’t scalable for life as a whole. What I mean by this is that nobody can scenario plan life to its fullest, and attempting it is a daunting task that will only lead to frustration given that there will always be (so many) things outside of our control.

Upon consideration, I found that I’ve been trying to do this for the last couple of years — probably since I’ve become a parent. Children take uncertainty to a whole new level. And in the process of building routines, setting boundaries and so, this need to control things grew in me to a point where it started to affect me.

The learning for me is clear: Optimism is a scalable approach to life. Pessimism is not. The big decisions in life can’t be hedged, they require leaps of faith. What I mean by “scalability” is that this is the only effective approach in the long run. It is not about having “sunshine happy optimism” — but instead about understanding that the big things in life are out of our control, and that the only thing we can control is how we react to our circumstances — so ultimately, why waste energy and bother?

First fully shaved head

4) You want to fight against something? Fight your fears.

The first time I was treated for cancer I only underwent radiotherapy. Therefore, when I was told that I would have to go through chemo, it sparked a number of thoughts.

I found myself one night, 2 days prior to starting treatment, browsing Spotify playlists for Rocky songs. I was preparing myself, going into “fighting mode”. But now that I think about it, I ask myself, fighting against what?

The chemo? It’s a good thing, a fundamental element to help me cure myself.

The chemo side effects? Yes — they would require endurance. But while not enjoyable, they were signs of medicine at work. They’re not “bad” per se.

The cancer? Ok, this could make more sense — except that I never really subscribed to the view of “bad cells” (I’d rather go with sick cells). And if the cancer stems from me — wouldn’t I be fighting myself?

Yet throughout the process of finding out something was wrong, getting diagnosed (which was not straightforward at all), and going through treatment, there clearly was a fight to be had (and a foe to face).

That foe was (is) my fear. In my case, the biggest one being, that if I died, I would leave my wife and children alone.

I wish I had an answer for this one. A magic formula that puts it to rest. But I don’t. I can now relax somewhat given I’ve been given a “thumbs up” but I know this lives within me and that I will have to deal with it. I think I have some hints on how to do it. I’ve learnt that true resilience is less about gritting your teeth through the bad, but instead about focusing on the good that will come. And that visualization is a fundamental tool in believing that good will come, as it helps us shape and make “the good” more tangible.

Life goes on during treatment

5) The idea of “finding equilibrium” is flawed at its core

During most of my life, I lived my life with a “mantra?” (for lack of a better word) which was about striving for 2 things: Perspective and Equilibrium.

Perspective would allow me to properly weigh things, not worry/fret about the stuff that wasn’t important, and be grateful about the many, many great things I had in my life.

Equilibrium was about inner balance and contentment. Not necessarily about going “half way through” with things, but instead achieving balance. Interestingly, I thought it was hard (or impossible) to achieve true perspective without equilibrium.

I’ve now come to the conclusion that my view on “finding equilibrium” was flawed. Because of 2 reasons: i) a pure “cosmical physics” (!) reason ii) a more down to earth one. Let’s start with the physics:

Ilya Prigogine (Nobel Prize in Chemistry) stated that “…information emerges naturally in the steady states of physical systems that are out of equilibrium.” Yes…I didn’t understand this the first (nor second nor third) time I read it. I’ll try to unpack it (with great risk of getting it wrong).

To put it simply, the “equilibrium” state in our cosmos is for life to not exist. Equilibrium from a cosmical perspective means that entropy ends up “devouring” any “anomaly” where life exists in the long run. The only reason there is life on Earth is because it’s an “out of equilibrium system” which is in a “steady state”. (More on “steady state” below).

Ok great — but how does this affect our daily lives? Think about it: What do we mean by equilibrium? Typically it has to do with achieving a goal we have set for ourselves. Once achieved, we will finally be able to be happy. Date that person. Get that special job. Get that degree. Get married Move to this or that apartment/house/city. Have children. Get a promotion. Run that race. Find love. Form a family. Lose those extra pounds. Win that competition. Learn this skill. Make X amount of money. Land that contract. Buy that car. Take that holiday. Get your children into school. Get your children into college. Launch this project. Create your own startup. Hike that mountain. Save X amount of money. The list goes on…

None of the items in this list are wrong per se. The issue is, we will never achieve equilibrium by doing them. Because (and this is why I like the whole physics aspects of it) life cannot exist in equilibrium. If this is one of the fundamental laws of the Universe, there must be a reason to it?

There will always be something else. There will always be a new “event” that unsettles your current scenario, and forces you to start that chase again. And the risk is that if we chase the golden pot at the end of the rainbow we call “equilibrium” (or balance), we end up finding ourselves tired and empty at the end of our journey.

To be clear, I do not mean not to strive to have goals and challenges in life. I think it’s impossible. Our brains have tens of thousands of years of evolution coded into them that have taught us to focus on “what is wrong; needs to be fixed”. The reason for this is simple — in the past, not fixing what was wrong would likely result in death. But that’s not the case for us.

Even so, this “dissatisfaction” is coded into our genetics. So we need to manage it. That’s where I find the notion of “steady state” interesting. Although life cannot ultimately exist “in cosmic equilibrium”, life does require a “steady state” to thrive (life cannot exist in total chaos either at a cosmic level). What I like about “steady state” is that to me, it implies dynamism. Things aren’t fixed, they are in constant movement, yet you are not under total chaos.

This is ultimately the notion I am now trying to bring to my life — one where I embrace the imbalances that exist and accept them, without surrendering to the flow and giving away my goals and dreams.

End of chemo selfie. Couldn’t have done it without them. And yes, the selfie is blurry, but that’s what life is like.

EPILOGUE

Three closing points:

1) Throughout the course of these ideas I’ve referred a lot to the body/mind connection. While this connection is important, I think there’s a third fundamental notion to keep in mind, which is that of “Spirit/Soul”. Throughout the course of chemotherapy, and seeing how my body’s chemistry was “out of whack” I wondered at many times what really defines my identity, given I felt both my body and my mind being “hijacked”.

I do believe our souls are ultimately what define us, and while this is a huge topic in itself, you might find this an interesting read in case you’re curious:

https://waitbutwhy.com/2014/12/what-makes-you-you.html

2) To all of those who helped/accompanied/supported me throughout this journey in these past months, a big THANK YOU. By doing this, you were braver and kinder than you probably knew, and I for one will not forget what you did for me. Believe me, it meant a lot. And in particular, a special thank you to all the superb medical staff that has treated me at NYU throughout these past months.

3) Last but not least, thank you God. “Whoever believes in me…rivers of living water will flow from within them.” John 7:38

There are things to be done.