29 May, 2018

Interview: cancer survivor David Downs

David Downs responded to his lymphoma diagnosis with optimism and a blog. Given six months to live after chemotherapy failed, he put his faith in a new treatment in America. Geoff Chapple reports

Within hours of his diagnosis, David Downs began a blog, and his insouciant approach to the disease was right there in the title: A mild touch of the cancer.

He’d once been on the stand-up comedy circuit, and his mates revelled in this jaunty raising of the middle finger to the big C. The news spread, and one of those mates texted back: “Well I’ve just filled my petrol car with diesel, so we’ve all got our problems Downsy.”

That set the tone. The statistics for non-Hodgkin lymphoma showed a long-term remission, or cure rate of 80 per cent; as a confirmed optimist, David Downs told himself 100 per cent. The cure was six cycles of chemo, three weeks at a time, eighteen weeks. “The columns will go on for about that long,” he wrote. “Stop me if it gets boring.”

Never boring. Selfies abound as he mugs his way through the procedures. The blog flinches not a whit from the farts and constipation of chemo. Pop-culture plot points and puns abound, and sometimes the writing lifts toward macabre brilliance… “Some of my bones, long hidden under layers of subcutaneous fat, are now making themselves appear. It’s like draining a swamp and seeing all the tree stumps and shopping trolleys.”

During visits home, he raids Ike’s in Clarence St to theme his hospital room: French week – Mexican week – Irish week. His visitors begin to look like refugees from a carnival, North Shore Hospital’s reception desk issuing directions without even asking who to: You must be looking for David Downs. He’s up at Ward 10, room 4. The doctors too submit to the theme before entering the room. Downs has his own room because he’s often toxic. Sometimes he’s radioactive.

In hospital, you shuffle and shrug within long corridors, and your illness is “debilitating”. That word is alluring, says Downs. He feels its power. It explains a lot, tweaks sympathy. Yet any negative word, he recalls from research he’s read, can cause the amygdala – that walnut-sized fear centre of the brain – to release stress hormones and neurotransmitters. These change the way the brain operates, towards passive acceptance.

So then, this disease, and the treatments that cause even your eyebrows to migrate south, are not “debilitating” but simply “a wee bit annoying.” The amygdala goes back to sleep. Downs remains upright, alert, even on the days he feels bad. One of the 80 per cent who get the cure.

He and wife Katherine are in a taxi, headed for the airport. They’ve just dumped the New Zealand medical system. Thirty-six weeks on from first diagnosis, he’s now done three separate courses of chemo, and they’ve all failed. He’s ingested the radioactive sugar solutions so MRI scans can check the chemo’s effects, and the cancer loves that stuff. Soaks it up, for there it still is in the MRI imaging, amongst the organs. The new tumour. Small but ferocious. Glowing.

They’re pulling out of Devonport, and they’re late to leave. The Lake Rd choke point looms ahead. That’s bad enough, but then the phone vibrates in Downs’ pocket. It’s the Harvard University Teaching Hospital in Boston, Massachusetts. The one that’s running the trial that could save his life. The hospital wants a 50 per cent deposit on the cost of the treatment – $750,000.

Well bite me! A forgotten voice shrills out of the Downs limbic system. If nothing else, Boston has achieved immediate cut-through to the amygdala.

“There’s no way I can arrange a payment of $750,000 today,” says Downs, keeping his voice steady. The villas of Devonport are slipping past the taxi window. It’s already occurred to him he’s going to have to sell their property, but you can’t do that quickly.

“Well, we have to cancel the appointment,” says Boston, and Downs admits to a stab of panic right then. The amygdala is pouring out stress hormones and neurotransmitters. He digs wildly for his cards, and gives the numbers.

“There was a pause at their end,” recalls Downs, “and muffled talking while I guess they hurriedly talked to their boss. Then they ask, ‘What’s your credit limit?’. ‘No idea,’ I told them. ‘But fill your boots – whatever you can get away with.’”

In New Zealand, he’s just been told by doctors: “David, you might have to curb your optimism a little and think about the worst-case scenario.” He’s been given six months to live. But now he’s on his way to Boston, for within a day or two of that fatal prognosis, the man who’s choreographed his own cancer with such intimate flair is being uplifted and carried along by some vaster choreography. A Pfizer doctor in New York holidays in New Zealand, keeps an eye on the place, has picked up the blog, and recommends Downs to the Harvard hospital. The researchers there show interest. But trialists pay their way, and it’s expensive.
Downs doesn’t have the dollars, but he has advice from friends who know the American system. Forget that you’re fighting death, they’ve told him. Pretend you’re buying a used car, and negotiate with the salesman, downwards. The negotiation starts right then, in the taxi.

“The hospital agreed finally that they’d charge me $10,000,” says Downs, “which was pretty steep for just a one-hour appointment with the doctor. But I wasn’t going to argue any more.”

They arrive in Boston. The doctors see a fit, youngish, and personable male, good for their statistics. They’re bankrolled by companies seeking patents for the new treatment, and the results of this, only the second US lymphoma trial, will affect stock prices.

With that much in their favour, David and Katherine negotiate. They go through the charges line by line. They win outpatient status. The doctor who okays Downs as an outpatient warns Katherine about temporary “neurological toxicity”. Some of the trialists end up in la-la land. And he says to Katherine, who’s little more than half Downs’ size, ‘If he collapses bring him in.’ Back in their apartment, Katherine will be eyeing the blankets and washing basket she’s going have to roll her husband onto, drag him to the lift, call to the doorman – Give us a hand here?

Those are the risks, but they take them all, and cut huge swathes off the bill. The charge finally will be $300,000, manageable, particularly with the hugely generous donations that a ‘Givealittle’ campaign has brought in.

Downs sits outside the Esplanade Hotel, pinot noir to hand. A big guy, with the quick wit, charm, and competence that powered his youthful stand-up comedy sketches, then an international career in IT, then his books on New Zealand inventions and, most recently, his job as General Manager, Projects, for New Zealand Trade and Enterprise.

He’s alive and well, and he’s recalling the treatment. They harvested his T cells, the body’s hunter-killer cells, altered them genetically in a lab to recognise the cancer in Downs’ body, then squirted them back through the chemo portal in his chest. In that moment, Downs tasted creamed corn. Just 3.7 mls of GMO blood, a tiny amount, but the cells were alive, and if they detected the cancer, they’d rapidly replicate. If they do that, said the doctors, you’ll experience flu-like symptoms.

Four days later he starts to feel fluey and he’s overtaken by zen-like calm. Whatever the result, he’ll handle it. By now it’s March 2018, and there have been 57 blog postings so far. They’ve hugged the physical and emotional contours of the disease as close as an escaped ski. Now the readers that download blog 58 get to hear that the experimental treatment doesn’t work well on everyone, and that blog readership waits, in real time, for the PET scan results. They wait, and they suddenly see the ski leap off that cold landscape, hotdogging into the air, with twists, twirls, backward flips, forward somersaults, whatever you like. Complete remission.

“There was huge serendipity around the timing,” says Downs in recall, “because what I had was exactly the cancer that Martin Crowe had, and died of in 2016. The same ‘double-hit’ lymphoma. Even a year ago, when I was diagnosed, the treatment wouldn’t have been available. And my New Zealand doctors told me they’d never have managed to get me onto that trial.”

So was it all just blind luck? Downs takes a sip of pinot, and watches a lighted bus of early evening negotiate the tight turn out of Queens Parade, and head up Victoria Road.

“I love that question, because it’s about your perception of the universe. I don’t necessarily believe there’s an intrinsic thing called luck, but there is a thing about how you perceive what happens to you, so I feel very lucky. Throughout the whole thing, all of it. So I did the treatment, and I got the completely best-case scenario.”

 

Source: 1 June 2018 edition of Devonport Flagstaff. Read online.