Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.
My hospital made complete visit notes after my cancer diagnosis available online and what I found in them is a gift of gratitude and shared awe.
My cancer center has done something amazing for patients. No, they haven't found a cure or made the hospital gym free for patients (one of those is an impossible dream), but access to my own visit notes and more is now just a download away.
A few years ago, I learned about the difference between the "patient summary" I routinely received after every visit and "visit notes," where the oncologist's more-detailed summary is included. To be honest, listening to others recount unfortunate wording in their visit notes made me wonder what my own might say. I didn't want to read negative comments about me personality nor did I want to find errors. What I wanted was a complete record of my care, some of the physicians' thoughts and a better understanding of events that continue to weigh on my mind.
Soon after I learned about the difference between these two things, I made it a point of asking hospital administrators about the lack of access to visit notes on our patient portals. I wasn't exactly a pest but I also didn't hold back. So, I was surprised one recent morning when I hit "request records" on my portal and was able to easily ask for a downloadable version of my care.
What would I receive??
Well, I received a 1,067-page PDF for starters. Some of it I'd read before because I'd made a point of requesting my notes every so often after a visit, but there were also details I hadn't known. Few were about personality, like when my hematology oncologist called me a "pleasant woman." Most were medical details I hadn't appreciated, including specifics about the blood clots that resulted in my hospitalization and port removal.
It was, overall, mundane stuff. I read about the lung biopsy that led to so much — my exclusion from an early-stage clinical trial, the unexpected finding that I was actually HER2-positive, knowledge that I was stage 4, lasting fear from the biopsy – and found time had dulled the hell of that specific day.
I also found unexpected joy in the notes from my breast oncologist. I started treatment in January 2015 and the visit notes reveal her excitement in early March when she wrote, "MASS CANNOT BE FELT!!!" after my physical exam. I knew I was feeling hopeful about the treatment, but my doctor kept her now-evident excitement to herself. I knew she also felt positive about my care, but I wish I'd known about that all-capital, three-exclamation point shout at the time.
If it turned out to be a temporary reprieve, I wouldn't have held it against her and I wouldn't have held it against my body. But I would have had a glimpse into how truly invested she was in my care and the science that had, at least for the moment, overtaken cancer.
If I'd seen that note at the time it was written, I would have felt supported in a personal way at the very point I needed it. As it stands, I feel more supported now and my gratitude toward my oncologist, who has been understanding of me as a person and has a fresh new patina of shared awe.
These unexpected gifts, from a hospital that has listened to what I want and from an oncologist who didn't hold back in her visit notes, are the perfect counterpoint to a stressful summer and I am grateful for them.