I meet with patients all the time, at different points of their diagnosis and treatment. From the minute they are diagnosed, people have to make endless decisions about their cancer treatment. They are becoming experts in everything they never wanted to be experts in and at the speed of light. They are learning about their diagnosis, the disease and its variations as well as treatment options, all while trying to make sense of the changes that will come to their lives as a result. They are using their resources–friends, doctors, nurses, support groups, and the internet–to fill in the blanks and to understand what is happening.
Doctors and in this case, oncologists, are experts in their field. The thing is, that we are in a consumer market that encourages us, as patients, to be educated about what our options are. I always say that patients are their own best advocates and I believe that. The thing is, that they are also presented with an overwhelming amount of information and they struggle to discern what is best for them.
Doctors often come to the table with a veritable smorgasbord of treatment options–clinical trials, new drugs, old drugs, new combinations of old drugs, new combinations of new drugs…it’s a lot of information. Delineating the pro’s and con’s, they then turn to the patient and say, “We’ll need to decide by next week. Let my office know what you want to do.”
I met with a patient some years ago, I’ll call her Helen. She was mid-way through treatment. Not unexpectedly, she indicated that she was feeling really “overwhelmed”. The thing was that up until that point she had been responding to treatment exceptionally well, but the last couple of scans indicated that the response was less than it had been. The tumors were gaining ground. This led Helen to have to contemplate a number of treatment options.
Confronted with multiple choices and not being sure how to weigh them out, or how to move forward, she denied feeling anxious. She denied feeling anything but “calm”. I asked her about this. I asked how, with such incredibly high stakes, she presented as so calm and centered.
This is when Helen shared a story.
It turns out that she had decided to decorate one of the rooms in her home with period paint-by-numbers paintings. I don’t know how many of you remember these, but they’re pretty terrific. You buy a box with a printed cardboard “canvas” and a string of little connected pots of paint. Each pot is assigned a number, and you fill in the canvas with its corresponding colors until you are left with a masterpiece suitable for framing!
Helen shared that she was very inspired by her project. She told me how intricate the pre-printed “canvases” were, and how, when looking at it, with all of its twisting lines, and then at the strange palette of tertiary colors, she had no idea how it would come to look like anything at all. “The colors are weird, and the shapes are strange”, she said, “but here’s the thing–if you just keep moving. If you just keep doing the next right thing, it all comes together to form a beautiful picture.”
Painting by numbers, she said, is an act of faith. It isn’t about what the whole picture could or would look like. It was about trusting the next right move and moving forward. Helen had decided that her treatment was also an act of faith, where she had lined up all of the tools needed, and she would simply make her “next right move”.
This makes me think of an excellent quote by Brene Brown, “Faith minus vulnerability and mystery equals extremism. If you’ve got all the answers, then don’t call what you do faith.”
And so here we are at the meat and potatoes of it. To be a patient today, regardless of your spiritual beliefs or lack thereof, requires a level of faith. It requires that we do not ask for or expect definitives. There aren’t any. Cancer patients sometimes come to a place where what had been expected or hoped for is no longer possible. I often say “trust your gut,” and this is what I am talking about. We don’t ask for guarantees here. We get still and listen to what feels best and most right.
This is a difficult, seemingly impossible place to be. But it is also an invitation. It is an invitation to figure out what information can be gathered to support the next step, and ultimately, it is an invitation to trust that that next step is the next right step. It requires vulnerability, absolutely. An acceptance of the unknown. It asks for faith in ourselves, our instincts, and our feelings. I have had patients move in the opposite direction from whatever everyone thought they should do, and regardless of the outcome, they were able to live with what happened, because this decision reflected the “next right thing”–for them, and based on the information given.
I am not suggesting that anyone blatantly defy medical counsel or the results of sound research. I am not suggesting that anyone blindly move forward based solely on what they “feel” to be right. I am very much suggesting that what a person feels is important. What they need and value is important. We don’t get guarantees here, and we cannot make a decision based on a desired result, but we can make a decision based on a number of factors and move forward knowing only that it is our “next best”. Not the “perfect” or the “guaranteed” choice. I am also suggesting that we can honor the truth of our spirits and instincts in the midst of the cacophony of opinions, voices, options and recommendations. To do something that feels good. Truthful. And in some cases, may even be suitable for framing.