Sorry for keeping you in suspense about my scan results! I had a second, different type of scan today to clarify some of the findings from the one I had last week. The short version: I still have cancer, which of course I was secretly hoping against all reason not to hear. The imaging still reveals at least three tumors, roughly the size of cranberries, scattered through the peritoneum (abdominal lining). But they haven’t grown significantly, and my liver, lungs, and other organs remain unaffected. In other words, my cancer is stable.
I’ve been talking a lot lately about immunotherapy — with family, friends, neighbors, anyone who asks me how my treatment is going. But when someone politely inquired the other day about my “amino acid therapy,” I realized that I’ve been spending too much time in Club Cancer! Not everyone speaks this lingo (and I’m glad they don’t have to).
So, let’s take a step back and I’ll try to explain the basic difference between chemotherapy — which a lot of people are familiar with, at least the word itself — and terms like “precision medicine” and “immunotherapy,” which are getting a lot of press in the past year or two. (more…)
They mean well. They really do. They love me and they want me to be okay.
I repeat this to myself, often through gritted teeth, whenever someone sends me information about the latest all-natural “cure,” or sends me books and documentaries and websites claiming to unveil the “truth” about cancer and how my doctor is part of a big pharma conspiracy.
I believe that they believe these things; my friends and family are honest people. But that doesn’t make it true. In a media landscape where anyone can pretty much say or publish anything they want, it can be hard for a layperson to tell the difference between solid science and anecdotal evidence laced with hype (or even outright quackery). (more…)
Oh, NED. I miss you already. Others who have experienced cancer will recognize this odd acronym, used by doctors to describe the awkward expanse of uncertainty between “measurable disease” and “cured.” It stands for No Evidence of Disease, meaning that there’s nothing in your bloodwork or scans to show that cancer remains in your body, and yet, the danger remains great and you must keep vigilant watch. It only takes a few rogue cells lurking in the shadows to wake the beast again. (Kind of like You Know Who at the beginning of the Harry Potter series.) Only time can tell how long your remission will last: could be a few months, could be decades.
Maybe, you dare to hope, the disease will Never Ever Dare to return. Sometimes it doesn’t.
It’s funny, the random things you remember and tuck away for later, without knowing why. A few years ago, I read an interesting article in the Washington Post about a drastic cancer surgery pioneered by a local man. Maybe it was his name that made it stick in my head: Dr. Sugarbaker. Such a pleasant name, so incongruous with what sounded like a kind of torture, a procedure involving the patient’s internal organs being basted in hot chemo drugs like a bizarre spa treatment after all-day open abdominal surgery. I remember remarking on it to my husband; joking about the name. I remember thinking “God help the poor people who have no options left beside that!”
Fast forward three years. My oncologist is calling, which can’t be good: He’s an email guy. I don’t even know his phone number. It’s after hours and it sounds like he’s on his cell, driving. (more…)