But wait. There’s more—like the doctor bringing me back in to his office, and closing the door.
“We have confirmed that you have cancer. It’s not curable. It’s called multiple myeloma, and you probably have three, maybe four years left,” he said. It was March 8, 2012.
Well, the next couple of days were mostly a blur of trying to figure out just what this was all about, this “incurable cancer.” No one in my family had any history of cancer at all—let alone something like this. After all, I was always healthy, with a bulletproof immune system, and I lived a healthy life tyle (mostly, sort of, if you ignore all the donuts and pie, and a double shot of vodka here and there).
I spent hours wandering on the Internet looking for answers about what this particular cancer is, how it works, what the treatments are like and the big elephant in the room: what’s the prognosis?
It’s been 2-½ years, and things are a whole lot clearer. But it took some doing, and my life has a “new normal” kind of rhythm. I have been through a stem cell transplant (which is worth a whole column of its own); two infections; double pneumonia and some radiation treatments. But I feel good, catching salmon with a friend, and I’ve taken some great vacations with my wife and “caregiver,” Jeanne.
So what’s the deal, and what happens if you get taken into a doctor’s office and he closes the door and proceeds to deliver “the diagnosis?”
Here is what I can definitely recommend, based on my own journey, and based on the input and stories of many others like me that I have come to know about.
First, as soon as the shock wears off, get connected. Tell your family and friends what you know and keep them up to date. Personally, I’ve found that full disclosure is the only way to go. Find credible websites for drug treatments, new trials and descriptions of your cancer. Just be careful of the Mexican peach pit cure, the Chinese herb cure and the miracle vitamin- crystal-jungle flower-whatever websites. Some places to start would be WebMD; Up-to-Date; the National Cancer Institute; Mayo Clinic; Seattle Cancer Care Alliance; Dana-Farber Cancer Institute and other similar university research centers. For multiple myeloma patients, check out the Myeloma Beacon, Patient Power, multiplemyelomablog.com, International Myeloma Foundation (IMF) and mPatient Myeloma Radio to name a few. Become as knowledgeable as you can, so you can let your doctor know what you want, or at least ask the right questions, such as: “Which is better in my case: a full-out aggressive war on this thing or incremental, low-dose treatments to start out?”
Next, put your team together. You should find an oncologist who specializes in your exact kind of cancer, not just a general cancer doctor. Once you have had your workup and follow-up appointments and are comfortable with the oncologist, then get your local doctor in touch with them, so they can coordinate your tests, treatments and ongoing health issues. My team is great. I have Dr. Robert Urata here (no introduction needed) and his nurse Emily Bos; Dr. Edward Libby a hematologist/oncologist and his nurse Barbara at the Seattle Cancer Care Alliance (‘the Hutch’); and Tamara Simone, the chemo nurse at Bartlett Regional Hospital who provides expert local infusions, so I don’t have to travel to Seattle too often.
Then, be your own advocate. Your doctors have hundreds of patients to take care of year-round. You are the expert on your body. So keep up on your lab results, treatments, options and side effects. Get second opinions. And don’t worry, your doctor won’t be insulted. Know when your pills are running out. Check the prescriptions and lab results and ask questions if you don’t understand something. I have actually caught a few mistakes along the way.
Meanwhile, my prognosis has gone from three years, to five, and now maybe seven to 10, just in these last couple of years. The science is moving quickly on cancer. I need to run to keep up with it.
Take care and see you later!