There are as many layers as an onion. -- Maru

Patient, Know Thyself

There is much talk now about the importance of being an “engaged patient” and I’m all for it. With this engagement though, whether it's taken or given, will come responsibility. I don't mean to be as blunt as that old saying in the early days of computers, "Garbage in, garbage out." But if the patient is not engaging in a constructive way, who is that going to hurt most of all? This is one inconvenient truth I always feel is left out of slogans about patient engagement. The other is the really hard truth that you can do everything right and it still may not be enough.

Like most people who get a scary diagnosis, I went right home and googled through the night. (This is not recommended, but it's hard to keep from doing.) I asked around, I read widely, I added supplemental medicine (some call it “alternative”) to my conventional treatments, I refined my nutrition, I got family and friends involved. Like many patients, I sought out the experiences of other patients. And like the luckiest of patients, I found someone online who had been given the same diagnosis and lived through it and was very generous with her advice and support. A year or so later, having both lived through it, we got to meet in person at the airport when she was changing planes in my city. A precious and shimmering event in the dingiest of settings.

I never quite felt like I was doing enough, though. I’m sorry to put it this way, but some of the stories I read about swashbuckling patients who really took charge made me feel inadequate. Yes, they made me feel inspired. There were these stories about people who’d been given no hope at all, but they got out there and found the miracle clinical trial or the one renegade doctor whose treatment saved the day. Good for them.

Saying that you beat cancer is taking more credit than I would tempt the gods with. I don’t tell anyone that
I beat the cancer. First of all, I’ve had unusual amounts of both good luck and bad luck in my life, and I know luck when I see it. Hearing people trumpet their valiant initiative, I couldn’t escape wondering if I didn’t survive this, did that mean I somehow didn’t want to live as much as those who had been more or better engaged patients? Isn’t every patient plenty engaged by definition? I was doing the best I could and didn’t appreciate being made to feel I might not be acting up enough. Even though nobody’s ever thought I was short on passion or feistiness. If you’re on my end of the spectrum concerning this issue, wondering if you can take a break from the fighting yet, this essay’s for you.

It seems to me that the other end of the spectrum features the people who are knee-jerk oppositional, which leaves them having a tough time following any doctor’s orders just because they are… “orders”. Only, know this: doctors can’t MAKE you do anything at all. You are stone free. So, use it wisely. Your campaign to prove that no one’s the boss of you may be dangerous shadow boxing. I’m just reminding that none of us is rational, whatever that means. While patients always have rights, are they always right?

Shortly after I got my cancer diagnosis, a former work colleague got hers (a different cancer). I am fond of the woman although it must be said that our working styles had not always meshed. Sure enough, those things that drove me crazy when we worked together drove me crazy again when we had cancer together. One of these is that before trying the front door she has a tendency in all things to want to go cobble her own workaround using behind the scenes resources, thumbing her nose at the boring straight-forwards. Another is that she is one of those people who leave stuff to the last minute.

For me, she became an object lesson for what can go wrong if the patient digs in on unwise decisions. No one, doctor or not, can save you from yourself. Instead of her doctor’s suggestions she opted for a treatment she had found in a paper published on the internet. She did agree to do some recommended chemotherapy. But she refused to take care of herself in the most basic ways during the ordeal, and then quit partway through which can potentially make you resistant to the same drug’s effectiveness if you choose to try it again later. She postponed and rescheduled surgery any number of times for up to a whole year after her diagnosis, again contrary to her medical team’s advice. It was against my advice, too, and she had
asked for my advice -- then lied to me repeatedly throughout that year about when she intended to have the surgery. People are complicated and act against their own interests. Alert the media. This person frustrated her loved ones to capacity, did indeed end up going through chemotherapy all over again later on, and when a surgeon finally got in to take out the primary tumor, it had spread to the lymph nodes. But I guess she exercised her rights, by gum, and didn’t let anybody else tell her what to do.

It happens to the rich and famous, too. Roger Ebert, the late movie critic, Pulitzer Prize winner and repeat cancer survivor, wrote that after a tumor had been found in his salivary gland he learned about work being done in something called neutron radiation. His wife and his doctors, including the specialist he found in neutron radiation, advised him to have surgery first and then try it. But he thought he’d figured out a shortcut (uh-oh) that was going to show ‘em all, including the leading guy in the field. And he talked them into doing it his way. This is what Ebert wrote about the aftermath in his 2011 autobiography,
Life Itself (which is a terrific read, by the way):

“All by myself, with nobody to blame, I found out about the work in neutron radiation being done at a handful of hospitals…The Internet is said to be responsible for helping patients take control of their own diseases. Few movies are ever made about sick people courageously taking doctors’ advice. No, they get bright ideas online. I believe my infatuation with neutron radiation led directly to the failure of all three of my facial surgeries, the loss of my jaw, loss of the ability to eat, drink, and speak, and the surgical damage to my right shoulder and back as my poor body was plundered for still more reconstructive transplants. Today I look like an exhibit for the Texas Chainsaw Museum.“

In the case of another rich and famous guy, you, I and everyone else are entitled their own opinion about Steve Jobs:

Even after I came under the care of my oncologist, I felt like I had a duty to keep researching because I had no idea where the end of that phase was. I talked to several doctors over the phone, having emailed them my pathologist’s report. And I kept wondering if that counted as “seeking a second opinion,” because the way everybody bandies that phrase around, you’d think it refers to a very specific procedure that we all should know how to do. I also applied to a patient advocacy group sponsored by a big and prestigious university and they took my case. I thought they were going to smoke out little known, cutting edge treatments for my stage 4 diagnosis. In the end, they told me that my doctor was doing exactly what he should for what I had. No drama, no swashbuckling.

Before this, I had never much liked doctors and had experienced the disrespect, insensitivity and arrogance that some of them are famous for. I know they can be wrong and I know that, as humans, they’re no more rational than anyone else. They failed me twice in life when they didn't save people who were as close to me as anyone has ever been. But when I began to seek help for those first symptoms I was having in 2009, I was grateful beyond all expectations leading up to it to be handed off from one doctor to another along a daisy chain that led from the naturopath who ordered some blood tests to the primary care physician who got suspicious about the results and recommended the gynecologist who biopsied my cancer and then sent me to the oncologist who managed my treatment. I didn’t go to medical school, so I had to at least listen to the people who had. It is true that action absorbs anxiety, but I don’t think you have to act just to be doing something, if that something hurts your cause. At some point, I was exhausted with trying to be sure I’d covered every base, turned over every stone, climbed every mountain. It was a relief when I decided to settle into treatment and, in Ebert's words, courageously take my doctors’ advice. So what if they never make the movie of my life. To have the life itself is the thing. ###

Illustration from my sketchbook.