We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from Jessica Rice, who was diagnosed with terminal lung cancer at the age of 30.
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.
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.
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.
Jessica Rice was diagnosed with stage 4 metastatic lung cancer in November 2011. After a seizure in June 2013, she learned that the cancer had spread to her brain. Now she is determined to accomplish the priorities on her ‘Frog List’ and takes each day as it comes. Jessica chronicles her journey at http://stageiv.wordpress.com and may be followed on Twitter: @stage4blog.