Note: While this is about my recent experience as a patient in a clinical trial for advanced ovarian cancer, I share it here because it's written from a survivor perspective. It's relevant for anyone who cares about trauma-informed policy and practice, in medical settings and beyond.
There is a difference between researching, diagnosing and treating a condition, any condition, whether PTSD, or cancer, and living with that diagnosis and treatment. Too often (and not just in medical settings), only those with medical or professional perspective are present and included in research labs, and in operating, press, and board rooms.
As survivors, and patients, our voices and perspectives should always be considered and included from the get go (rather than as an after thought). We should be in leadership roles creating or co-creating organizations and initiatives.
How we live with issues and conditions, how we manage the threat of relapse and recurrence, how we juggle the short or long-term effects of trauma and disease - it all has a huge impact. How we are treated (or mistreated) individually and as particular groups matters because those conditions impact outcomes.
Sometimes, we are living with an acute crisis like terminal cancer. Sometimes we are living with a chronic condition like post-traumatic stress (which can be managed or may also be life-threatening). Sometimes, we're dealing with both.
As with cancer, some of us are cured, and some of are not. Some of us learn to manage with a diagnosis, and some of us don't make it at all. Some of us don't survive the diagnosis or the treatment. Some of us have access to services, resources, and support that might help. Some of us face insurmountable barriers, obstacles, and injustices. Some of us get access to life-changing or life-saving or life-extending treatments - and too many do not.
While this essay is about my specific experience in a clinical trial as standard of care options for my type of advanced ovarian cancer are running out - I hope it is accessible beyond my specific situation. And, to be honest, I'm honored that it is published in a journal not known for usually including an essay in the free-writing style in which I write.
While my clinical trial experience was grueling, being able to write and share about the experience has been healing. So here's an excerpt of was published today in the New England Journal of Medicine's newer publication called Evidence.
Being on a clinical trial is like being on a speeding train you hope will deliver you to a vacation destination where you might rest, recover, and remember what you love about life — but first, you must promise not to sue if it crashes, maims, or kills you.
Despite the risks, you pray for the golden ticket — a rare spot in a new trial where entry is limited to less than 500 people. You’ve already been told the train is full when suddenly, your oncologist appears like a wizard days before you make do with a mediocre staycation (the standard of care), because one seat has become available.
You don’t think about who died, “failed out,” or quit the trial because you are packing, prepping, and searching for your passport (qualifying for the trial requires extensive labs, a computed tomography [CT], a positron emission tomography-computed tomography [PET-CT], electrocardiograms [EKGs], an echocardiogram, and an ophthalmology visit).
How does a mother with metastatic ovarian cancer make the best use of her time? How does she measure the loss of time, money, and her most precious resource — energy? Instead of trying for more time, should I be writing letters, finalizing wills, taking bucket-list trips, or making recordings for every major event I’ll miss (the graduations, birthdays, weddings, and births)? Should I enjoy ordinary meals, phone calls, and laughs while I’m well enough?
To read the rest of the essay, please visit the New England Journal of Medicine website.
P.S. I'm feeling really well at the moment despite not having a super response to this trial. The radiation I had shrunk the tumor in my lymph node and I've had a wonderful summer for which I'm extremely grateful. I hope you here at PACEs Connection, staff as well as members, are doing well or as well as you can.
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