Liz Johnson

“I’ve heard there was a secret chord, that David played and it pleased the Lord. But you don’t really care for music do you?” Last week I got the news every cancer patient wants to hear: Scans show No Evidence of Disease

But looking through Google’s news feed on the subject, I can’t help but wonder if today is the day journalists dug into their pile of press releases to see which ones mentioned cancer, then just regurgitated the information without doing any real research or asking meaningful questions. Then there’s this CNN story that somehow determines that a correlation between obesity and cancer somehow makes obesity a cause of cancer, particularly among millenials. So let’s say you take the number of pizzas sold at your local pizza place on Superbowl Sunday and match it with the number of kitten videos posted on #Caturday on Twitter and plug it into the same formula to find an 80% correlation. But read a little further and really what he’s suggesting is that detecting cancer can buy five year’s worth of life, which really isn’t a cure and certainly doesn’t prevent millions of deaths.

When the President signed the Right to Try law at the end of May, I suddenly went from persona non gratis as a #preexisting condition to a terminally ill darling  whose life Congress and the administration were gushing to help save. Its goal, at least we were told, was to give terminally ill people like myself the option of trying drugs that weren’t yet approved by the FDA for treatment of my type of cancer, but had shown promise. This point was completely missed by the press coverage of the new law, which went to great lengths to talk to doctors who obviously don’t spend a lot of time with the “terminally ill”  but were more than willing to talk about how innocents like myself were now sure to be duped or misled by the holy grail of a treatment promise. Even the law as it’s written seems to see those of us who are terminally ill as frail, bed-ridden, desperate folks looking for some Hail Mary pass that will buy us a few days or a month of life.

While none of us can know how much longer we have to live, being diagnosed with an incurable cancer makes you start doing some math in your head. In my case, estrogen-positive, bone mets only patients have a median lifespan of 8