HURT SO GOOD

Change is often painful. That's why you do it.

Happy Sunday Peaceniks. Ready to rock?

SXSW is my favorite event of every year. I’ve been going to Austin for the festival and/or conference for over 20 years. Many of the last few years, each year, while I’ve had amazing experiences, learned incredible things, and met wonderful people, I have done so in increasing amounts of pain. I saw doctors, took tests, changed diets, took supplements, but nothing really took away the underlying aches that occurred after nearly every meal, nor the drain and fatigue I felt at the start and end of each day. I was told I had IBS, or some other catch-all non-diagnosis of “sour gut.” So, I powered on.

ME, PRESENTING AT SXSW 2023

In the past few years, my experiences at SXSW changed. My time spent at each festival evolved from the content side, producing and curating comedy, to the innovation end of the spectrum. As my profile as Media Cartographer grew, I was asked to present insights and predictions on the larger Media ecosystem, to offer “thought leadership” to audiences who came to Austin each March looking for change in Media.

The last couple of years were truly remarkable for me – at SXSW and beyond. Last year was likely the most successful of my career. I was invited around the world to speak about transforming Media – to the Royal Television Society in London; to the European Broadcasting Union in Poland; to companies in Germany and Czech and Denmark and the Middle East. I’ve had the surprising good fortune to collaborate with awesome companies and organizations in the US and Europe on fascinating assignments focused on the transformation of Media. As a friend has described: By being even more of myself than usual, I have found a way to get paid well, for being Evan.

Last year, I was, without question, at the very top of my game. And then I was diagnosed with cancer. My form of cancer is Follicular Lymphoma, quite treatable and manageable – usually not fatal, but also not really curable.

So, I embarked on treatment. Rather than chemo, I was able to get into a clinical trial for a monoclonal antibody called Mosunetuzumab (aka Mosun), genetically designed to ONLY attack cancer cells. While there are short-term risks, unlike chemo, Mosun does not destroy your immune system, attack your heart, or damage your marrow. It also does NOT make you lose your hair – a huge plus for someone, like me, whose hair is core to their personality.

Treatment went well. Maybe too well. The enlarged lymph nodes which had entwined themselves throughout my intestines retreated so quickly, they tore small holes in my bowel. This is not a usual side effect of this treatment. But because the cancer had gone untreated for so long (years as it turns out), they had grafted themselves into the skin of my bowels – hence the pain and difficulties in my digestive track. This sent me to the hospital for a traumatic three weeks last fall to remove the poison that had leaked into my body cavity. Afterward, I recovered, gained full strength, but did not go back on treatment, as my docs did not want to risk another episode by giving me the powerful drug again – they feared that another speedy retreat might engender more damage.

So, two weeks ago, I went back in hospital, for a bowel resection – to remove the problem areas of my intestines, as well as any additional invasive, threatening lymph nodes. The robotic procedure allowed my surgeon to scope out my whole body cavity. He found two areas of bowel that need to come out. He also found that one of my lymph nodes had grown so large and metamorphized so much, it had swallowed my appendix, causing it to burst (likely the catalyst for the physical presentation of the lymphoma that got me my initial diagnosis last summer). So, he took my appendix, and all the offending lymph nodes out as well. A couple of days later, I needed additional surgery to deal with a new leak, which delayed my recovery and elongated my stay.

A double bowel resection takes a lot out of you – literally and metaphysically. The recovery is painful. I have not been able to eat solid foods for two weeks. Sleeping is difficult. I am still re-training my body to fart without sharting. But worse was the mental ordeal – lying awake at three in the morning thinking about starting treatment all over again, not really knowing if this battle in my bowels might flare up all over again. The surgery was meant to prevent that, but as my oncologist and surgeon told me on the way in, there was no way to guarantee that. My paternal grandfather died at 56 – the same age I am now – of a stroke. My father died at 61 – just five years older than I am now – from ALS. Lying alone in a hospital room, this historical context runs through your head like a runaway train.

I got home on Friday. And on Friday night, my oncologist called me. (Yes, my doctor from Memorial Sloan Kettering called me from his home on a Friday night.) He wasn’t just checking in. He had news. “There are no signs of cancer left in your body. I don’t think you will need treatment again for a very long time.”

…

In 2020 and 2021, despite the pandemic, the Media/Tech industrial complex was at the top of its game. Everyone had hot new streaming services growing like weeds. Revenues and engagement across the spectrum were at all-time highs. Everything was pointing up and to the right. Disney had the best launch of a new entertainment platform in history. Apple became the most valuable company ever. Discovery was about to become a major Media player by buying Warner Media from AT&T.

But, in truth, the Media ecosystem had not really transformed as much as it had simply put new lipstick on the same old pig. As consumers moved to streaming, the Media oligarchy simply moved its crazy subscription economics from the cable bundle to an overabundance of individual subscriptions – and in doing so, they pulled the entire rug out from under their ad business. Meanwhile Apple, Google, Meta, and Amazon got high on their own supply, somehow convincing themselves that the New Jazz Age of consumption and remote consumerism would continue forever – even after the lockdown ended.

And then, at the start of 2022, the Media found out it had cancer.