An executive at a Boston-area educational technology company, Doug Smith was recently diagnosed with an aggressive form of acute myeloid leukemia. He is the author of a blog, Two Sides of a Lifetime, which tells 2 stories about cancer. The first story is about his own diagnosis and treatment. The other is about losing his father to melanoma when he was a child. Follow him on Twitter @2SidesLifetime.
It started the weekend before Christmas, when I kept running very high fevers. Each day, they got worse. On December 27, my wife drove me to see our primary care physician. Our doctor reviewed my chest x-rays and my blood tests. Then she sent me to the emergency room. My wife and I thought it was pneumonia. Our doctor told us definitively that it was not pneumonia. She mentioned the word “cancer,” but we both kept thinking it might be pneumonia as we walked back to our car.
Our doctor sent us to the emergency room at the local cancer center in Boston, which has 2 campuses. One campus has an emergency room. The other campus does not. To make sure we went to the correct building, she gave us very precise directions. But we still ended up at the wrong building. We took a left where she told us to take a right, and we drove between 2 signs that both read (in large letters) “ATTENTION: No Emergency Room on Site.”
Missing the signs, mishearing your doctors—this is all part of my experience of cancer. I had even more trouble understanding my doctors when they told me that I had acute myeloid leukemia. What is acute myeloid leukemia? Will I survive? Why or why not? The bigger my questions, the more I struggled to understand the answers. It was like sitting in a classroom where someone has turned on a fog machine and it is almost impossible to see the board.
A recent study in England concluded that people with blood cancer have the most trouble understanding their diagnosis. But I suspect that every cancer patient has trouble learning when their doctor first starts talking about their diagnosis. There are no comparable situations in ordinary life. It’s as if someone grabs you off the street, explains some freakishly complicated subject (like nuclear physics, advanced concepts in math, structural engineering, or how to write software) and then asks you to sign a consent form that says you understand a procedure that could save your life, or could not, and might leave you with any number of devastating side effects. However hard doctors try to explain themselves—and my doctors did try very hard—their explanations are filled with words and concepts that weren’t part of my education. No one can explain in 20 minutes what took them years to learn.
So I heard this diagnosis in a fog. Part of the fog was my own lack of training. I understand other subjects very well, but not cancer. My emotions comprised the rest of the fog. I felt so surprised. (“Me? That can’t be me! I can’t have cancer.”) I felt so ignorant, inadequate, and out of control. And I felt so scared. People often recommend that you bring someone else to these diagnostic conversations. This certainly helps, but whoever you bring will almost certainly be close to you—a husband or wife, sibling, parent, or good friend—and will likely suffer their own fog of emotion.
I remained in the hospital almost continually from late December through April. I went through 2 rounds of induction chemotherapy and then a bone marrow transplant and many, many visits to an outpatient clinic. Here are a few techniques that helped me learn through my fog.
Phone a few friends. I had more than 1 person join the most important conversations with my doctors, especially during the first couple of weeks after I was hospitalized. I used my laptop and a conference-calling service. (There are many free options.) My wife joined me in the room, and my friends joined us online. Then I talked to each of them after the conversation ended and asked them to summarize what they heard. Everyone was emotional, but we each heard different things and those different perspectives helped me put the puzzle together after each conversation.
Record the conversation. Most of us have smartphones. You can use an app like Voice Memo (on iPhones), Voice Recorder (Android), or the Cancer.Net Mobile app. I didn’t record every conversation with a doctor. I recorded only the hard conversations, those really gnarly conversations, the ones that used terms like “cytogenic analysis” or explained my specific genetic mutations. And then I would listen to the recordings afterward and take notes. Remember to ask permission before you start recording.
Check your own understanding. A good classroom teacher stops to ask questions after explaining a particularly hard concept. She does this to detect and correct any misconceptions and to make sure her students are ready for the next step in the lesson. Most doctors aren’t trained to do this. However, you can do it for yourself. Stop the doctor and ask, “Can I say all this back to you?” or “Do I have this right?” Then summarize what you think you just heard. Listen carefully when the doctor corrects you.
Explain it to someone else. Explaining what you just learned improves your understanding. Try telling someone else what you know about your diagnosis. You can do it verbally—with the next person who calls or comes to visit. You can also do it in writing—in email or texts or on an online platform such as CaringBridge or PostHope. Don’t hesitate to use your notes or go back to a recording and listen again to exactly what the doctor said. Doing all this not only firms up your understanding but also builds your confidence and increases your sense of control.
Throughout my months in the hospital, 1 of my daughters kept saying, “Dad, I believe in modern medicine.” Now that I am in complete remission, I am in awe of modern medicine. But you need to understand what medical procedures and tests are being done to you, and modern medicine can be intimidating and overwhelming. Just remember: You are a learner. You know a lot about something else. And you can learn what you need to know.