How Esther Dyson Imagined Her Cancer Journey as a Video Game

Distancing herself helped her find meaning—and humor—in a "crazy"process. She hopes it will help others, too.

Author's note: This spec for a video game is the byproduct of my four-month encounter with cancer of the esophagus, which ended successfully in April 2016.

It was an odd experience: The diagnosis was not a huge surprise, because I already knew I had Barrett's Esophagus, basically inflammation of the esophagus, with a 1 percent chance per year of developing cancer. However, I had none of the typical physical symptoms; I found out about my condition during (of all things) a comprehensive medical examination as I was training to be a cosmonaut in 2008 (a whole other story!). I was lucky; my cancer was discovered in stage 0-1. Cancer of the esophagus is usually found in stage 3 or 4 – when it's too late.

So I felt in perfect physical health during this whole ordeal – even though my mind knew I had cancer, growing slowly with each tick of the clock. I knew how lucky I was to have found it (regardless of how unlucky I was to have it in the first place), and I also was lucky to have connections, time and stamina to work for the best outcome, whatever that might be.

It's a truism that the best way to bear torture is to distance yourself: Analyze your reactions; become an observer; imagine yourself playing a game. To some extent, that's what I did. I had to play the game consistently and patiently, but at the same time I had a full-time job to distract me between the steps.

Ultimately, the purpose of this game is both to show how crazy the system is, and to share the experience with people unlucky enough to face it or powerful enough to change it.

It's in the form of a spec rather than an actual game because no sane person would ever want to play it - nor would any sane person ever want to create it! Okay, your move!

Second Opinion is a rigorously-paced VR game, with exciting visual effects including waiting rooms filled with people in wheel chairs, hospital corridors with dull walls lit by bright neon, clinical staff in white coats, a brilliant day that makes you glad to be alive seen through a filter of medical reports, and so on. You the player have just received an unexpected diagnosis of cancer of the esophagus. After a couple of false starts, you get to a hospital for tests with a doctor who counsels an esophagectomy - removing your esophagus and replacing it with stomach tissue (and leaving you with very little stomach). It’s a brutal but relatively safe procedure, with a short hospital stay and just a few months of recovery, though your quality of life will be permanently compromised.

Your mission is to manage your medical care for optimal results, based on your risk preferences, your ability to manipulate the system, and your persistence.

The Gameplay

You start with 1000 points, 10 points per step for this 100-step, almost seven-hour game. You need to make sure that you do not run out of them, because that will end the game prematurely. Otherwise, the game ends with your procedure, which automatically starts at 97 steps. Each step costs 10 points, but sometimes you get extra points back if the step goes well. Your final score is calculated at the final step, while you undergo the virtual procedure. More on scoring below.

You have to wait four minutes between steps in the game - long enough to be annoying, but not long enough to do much else while you keep playing the game. You can skip a step, but then you just lose the whole 10 points. Once you start the game, you can’t come back and resume it later, because time keeps passing, and you may run out of step/time points if you don’t keep playing each step at its appointed time. (For the best simulation, it should be played at work or during child care - because that’s how disease actually happens.)

However, though the steps keep time like a metronome, the actual play occurs in threads, weaving through the other threads, as you can see below.

Enough setup! The clock is ticking!

Initial Consultation

After your starting-point diagnosis in an independent clinic, you need to find a doctor/and hospital to perform the surgery that will clearly be necessary. That requires several steps, at 10 points each. Calls to friends and your primary-care doctor for recommendations: 10 points each. A fruitless half hour on the NY Presbyterian website attempting to make contact: 10 points! And finally, a hit! A friend puts you in touch with a doctor at Mercy Hospital (10 points) who actually returns your call (get 5 points back). That leads to a little appointment-setting dance (with voicemail) that costs 30 points, but now you have an appointment for early March.

Meanwhile, cue the second thread: Insurance!


This thread continues for the duration of the game...and in fact persists for months after as random bills come in, some of them for amounts like $43.23, others for $12,582.49, offset by various payments such as $11,263.47 and $55.42, and others for $0.00, but meticulously linked to some particular service or other. (You can remove this feature, which is a browser plug-in loaded automatically by the game, by consulting a 12-year-old.) These bills take time to figure out, let alone pay (another step) – 10 to 20 points each.

You start by calling your insurance company to notify them of the diagnosis and to check that they will actually cover the procedure – resulting in a multi-step (four minutes apart) string of call-backs and voice mails, but all seems well.

Scheduling each step – a required medical consultation or test, for example - is a step in itself; so is calling the insurance company so they call the doctor, and calling the doctor’s office to ask her nurse to call the insurance company back. At each step, you usually get to choose from several options, including high-risk “obnoxious-intervention” measures (50 points each) that sometimes give you a positive response, but that might backfire - in a denied claim, for example – if people react badly. In the case of insurance, you can call an old friend who is now the medical director at the insurance company. (In my case, that turned out well.)

Initial Consultation – Part 2

Once you’ve set up the appointment and checked with insurance, the next step is simple: You get a treatment plan – in my case, the esophagectomy. That leads to more steps for scheduling, which takes some back-and-forth and also cannot be hastened by the user… Ultimately, the appointment is scheduled for early May...leaving time for a third thread.

Second Opinion

At this point, the game asks the user: Do you really want to lose your esophagus? For 50 points, you can ask Steve Jobs’ cancer doctor, whom you happen to know, for a recommendation of an alternative hospital and procedure. Your first reaction is that this would be rude and a little bit like cheating, but hey, this is a game where it’s important to win, so you take the bait. That leads to a bunch of separate threads: You have to go back to your original doctor to get a scan of the lump (2 steps), you have to pick up the CD-ROM (remember those?) in person (another step) and FedEx it to the doctor in San Francisco who will recommend a doctor in your hometown.

But this time you get lucky: With a connection from an illustrious physician, it takes only one round of play to get an initial appointment with another hospital – for two days later.

But then the complications return: The hospital wants to do its own scan and diagnosis before proceeding, and it’s not covered by your insurance. Re-engage the insurance thread, which takes another five rounds of play – including the real-time cancellation of a PET scan ordered by the hospital but not covered by the insurance.

The second hospital, call it Redemption, wants to do a less radical “procedure” (i.e. surgery), requiring more skill and special instruments, that removes only the cancerous tissue plus a small margin. It may need chemo/radiation follow-up, and recurrence is more likely. However, in 5 to 10 years, there may well be immunotherapy that makes recurrence a minor issue.

Meanwhile, this other option will actually cost the insurance company - and you – much less: On the order of $30,000 for an outpatient procedure, basically, plus half-yearly follow-ups, vs. over $100,000 for the esophagectomy. But your insurance company doesn’t have a relationship with Redemption. Can you successfully make the case to them? How many rounds of play will that take – including further calls to the voice mail of your friend the medical director?

In short, do you want to risk all those points on a second opinion that may not work out? That’s up to you the player. And the game is already more than half over….

Strategic Play

One signal aspect of the second opinion thread is that you can run it partly in parallel with the rest of the game, though at some point you have to choose one path or another without really knowing the likely points attributable to either path. In fact, you are expected to learn how to juggle several different threads – insurance, doctor visits, transfer of records from one institution to another, and the vicissitudes of normal life (work and family) that proceed simultaneously.

How It Ends

The game proceeds along these simultaneous threads until step 97 – the procedure. This takes three steps – prep, anesthesia, and calculation of the final score. It doesn’t matter where you are on the other threads; these interrupt that flow. Prep is hard to express in VR; it mostly requires not eating or drinking.

And the anesthesia…It depends on the player’s attitude. I’ll always remember the long long minute during which I sank into sleep for my procedure, with my stepmother by my side. Whatever the outcome – tumor removed or rampant malignancy discovered, simple process or punctured tube – the four months of this horrible game would be over. It wasn’t quite like dying peacefully, but it was definitely a conscious, blissful passage from an unquiet life of uncertainty to some further stage where I could focus on either dealing with a new reality or resuming the old one.

The End

And at last, step 100: Your final score – which you receive when you wake up from the procedure -- reflects the skill of your play multiplied by a random number between 0 and 10.  

Well-Being, Health and Wellness

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