Asking the Hardest Questions

This week I was honored to guest post for Scope, the blog published by Stanford Medicine. The original post appears here.

Since becoming ill, I’ve learned that I have the innate ability to make doctors very uncomfortable – squirmy, even. It’s surprising because I had assumed medical professionals with decades of experience have fielded every possible question a patient might ask.

But I suppose I’m not a typical patient. In November 2011, I was diagnosed with stage IV lung cancer (bronchioloalveolar carcinoma, a subset of adenocarcinoma) with extensive spread to the mediastinal and hilar lymph nodes. At the ripe old age of 30, I joined a very exclusive club of young, non-smoking women with this rare cancer.

My biopsies were immediately tested for genetic mutation and found to be ALK+. Crizotinib had received FDA approval a few months earlier, so it was the logical first course of action. The pill was successful for three months before two things happened: toxicity set in, and my cancer grew resistant. Next, I tried two different chemo cocktails; both failed. I joined the LDK378 trial in November 2012 and had an excellent response. Unfortunately I experienced very painful side effects which led to dose reductions below protocol. I was likely getting booted from the trial and taking a break when I had a seizure this past June.

My MRI showed five brain tumors, along with small lesions I affectionately termed “brain lint.” After two CyberKnife sessions, a few tumors shrank, a couple grew, and five more sprouted from that innocent looking brain lint. It was time for whole brain radiation.

Through all this I’ve worked with more than a half-dozen doctors and surgeons. Some have impressed me, a couple seemed lacking in one area or another, and one even managed to capture my heart. Regardless, I’ve unintentionally made all of them uncomfortable at one time or another.

It could be my tough questions.

I consider myself a down-to-earth, logical creature; looking at the facts and hearing the truth is strangely comforting to me. This is why I recently asked, “What will dying be like if it’s the brain tumors that kill me? Will it be sudden, like a seizure with an uncontrollable brain bleed?” I had asked this question long ago in relation to lung cancer, but it now seems more likely that the brain tumors will lead to my demise.

The chemistry I have with my primary oncologist is spot-on, and though my questions may still make him uneasy, he has adapted well. For this one, he started, “I can’t believe I’m going to say this…” and then answered every single follow-up question I had. Sadly, most cancer deaths are drawn out and painful, and I don’t think most people are prepared to hear the details. I wanted to know, though, and my doctor didn’t spare me.

I also think it’s sometimes not what I ask that can rattle physicians – but how. I’m very direct, and perhaps I don’t get as emotional during appointments as others expect. This led to a recent awkward encounter where a doctor literally stopped and stared at me in an odd moment of silence. I quickly wrapped up the visit, but I could tell he was disturbed by my demeanor. Maybe he didn’t think I cried enough. Or perhaps I seemed too resigned to what was happening to me.

Let’s face it – what I’m discussing with these doctors is no picnic. While there’s a sprinkling of terminally ill 30-somethings out there, we’re not a common sight in most oncology offices. And my presence alone might make some uncomfortable.

So, which of my three theories is correct? Is my directness off-putting? Does my logical approach confuse doctors who are expecting an emotional young woman? Or is it that my presence alone makes them sad? It could be all of those things, or a combination for some, but it may also be that even the most seasoned professionals hate facing the ugliest truths about cancer.

We all want to believe our doctors are stronger and better prepared for our fate than we are, but that’s just not the case. As patients we must seek out the physician that can not only listen – but also answer with as much honesty as we seek.

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9 responses to “Asking the Hardest Questions

  • kimmywink

    Great post Jessica! What a wonderful piece for the Scope Blog.

  • MikeW

    Fooling a writer isn’t easy. Too perceptive a lot they are. Knowing the worst and seeking to improve on it, that’s something you can do with the truth. Also, facing mortality we all are, and as much as it feels time flies, we’re all some bit of sand away. Your pioneering confrontation, which i pray meets with healing and recovery, is a gift to readers because all will go up the mountain to an elevation that is inconsistent with the body following along. Such a spirit will eventually collect a rescue and regenesis party to come back for the rest and make it as it should be. So many of us believe this because of the mystery of ends where intelligence can conceive of infinity, can conceive of a Cosmos beyond our mental grasp yet nonetheless real for us. How I explain the meaning of the ugly battles we face in life is crucial to raising a child with hope, purpose, and a sense of mattering.

  • Cindy

    You are so brave! I wish only the best things for you. That was a great post!

  • Susan

    Jessica you are amazing. I want to click “like” on your post because I love your writing but I obviously would prefer you not have lung cancer, be so young and have to ask the tough questions. Great post!

  • Ed

    Throughout history, it has been those that are willing to ask the very tough, uncomfortable questions that have led to the advance of science, medicine, arts, music, education – so keep challenging the status quo. Your posts are inspirational – thank you for continuing to do them.

  • mikekenney

    Just found your blog and this was the first post I read. I can greatly appreciate it. I just entered the terminal with “C” club in June and after coming to terms with the reality before me I’m much the same as you with wanting to know all the facts even the little dirty ones that no one wants to talk about. Drives my wife nuts but for me it gives me an absurd sense of control where I really have none. Of course I’m two decades older than you and a guy so I guess I’m supposed to be a bit more… composed. (pffft what a crock) I look forward to going back through your posts and learning more.

    Peace,
    Mike

  • Michael Knapp

    As a family physician of 30 plus years I can understand your experiences. I know that when I have bad news and bad outcomes to tell patients and families I have to guage at what level of information they can absorb and withstand. If I encounter someone like you I hope we have built a relationship so I feel free to give you the best knowledge and advice I can. If I come upon someone like you as a new patient it is more difficult to spew out bad and detailed information on the possible horrid symptoms you may encounter with treatment. Therefore the hesitancy of physicians you describe is understandable. Death is something we cannot always predict and we hope for all it is quick and the least uncomfortable as possible. That is why we often push drugs. But the emotional and spiritual experiences of a patient are an important facet of how we approach this topic.
    For you…..Gods Speed
    Dr. Mike

  • Kathleen Hoffman, PhD

    Reblogged this on Health Communications and Health Advocacy and commented:
    Jessica Rice is an amazing woman who asks the hard questions.

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