My mom Julie was diagnosed with stage 4 ovarian cancer I was 21 when I got her diagnosis, and had been drinking legally for the first time a few months ago. Since then, she has undergone nine hours of surgery, six chemotherapy treatments, three relapses and two clinical trials. It was her blinding five years of pain, fear and love.
Gunn’s roller coaster is one of ups and downs and 360 degree flips. Yet, in my opinion, her treatment is clearly divided into her two phases. The stages are separated not by surgeries or chemotherapy or vacations spent wondering if this will be the last time, but by changes in federal health care policy.
Nationwide in April 2021 rule,part of 21st century curewent into effect, requiring U.S. health care providers to provide patients free, prompt, and complete access to health information in electronic medical records. For our family, Cure Rule split my mother’s cancer between her two.
Phase 1 was defined by wait. At this stage of my mother’s cancer, Scan Week began with blood tests to measure cancer markers and organ function. Her CT scan was then done, her tumor measured in centimeters, and the results recorded in a radiology report we never read. Waiting began after scanning.
A lot of cancer awaits. There is no wiser naming convention than a hospital “waiting room”. The corpse sits in its limits, torn between diagnosis and life. We, Team Julie, were filled with intense anxiety as we waited for the oncologist to reveal her mother’s latest scan results. I felt that without information it would be impossible to plan, anticipate and prepare.
And judgment. heaven or hell. Shrinking tumors or growing tumors. The moment felt catastrophic, decisive, and often devastating. Making decisions in shock is difficult, but when test results become known and treatment decisions are made within the same 30-minute appointment time, it is much more difficult. we did it a lot.
When the “Cure Rule” went into effect, we entered Phase 2 of my mother’s cancer. This was also a new phase for the Memorial Sloan Kettering Cancer Center app, MyMSK. MyMSK launched in February 2015but hospitals release radiology reports as soon as they become available via apps, often just hours after the scans are done and days before the fateful appointment with the oncologist. I started doing it after the Cure Rule was enacted.
At first, Team Jury was overjoyed. Wait no more. There will be no more judgment day. Momentary information felt like a painkiller to the endless list of unknowns that came with cancer, and we longed for that relief. I downloaded the MyMSK app to my phone for the first time.
Scan Weeks has a new look. Well, my mother’s CT results were recorded and published in a report that I could read that day. I spent those days loading and reloading her MyMSK app on my phone, waiting for the results. My stomach jumped when the app revealed that a new CT report was available. A roller coaster that rotates 360 degrees is condensed in an instant.
As Phase 2 continued, loading and reloading the MyMSK app became a tense habit. I stopped at a red light, from a public restroom cubicle, and while lying in bed watching TV, I loaded and reloaded the app and waited for the latest results. My obsession reminded me of repeatedly updating my Instagram feed after a particularly painful breakup. It was obsessive and isolating. When the CT report appeared, I canceled the plan and spent time deciphering the results. Deeply buried in anticipation of future loss, I began to slip out of the present.
There was a fundamental flaw in my obsession that was revealed in the first line of each CT report, “Clinical Statement: Ovarian Cancer.” These reports are intended to be read by clinicians, and neither I nor my team members of the jury can call ourselves that.
After reading the results separately, Team Jury will unite.
“Oh, thank God!” my mother began our conversation on the joint phone, always optimistically. “My tumor did not grow” or many! “
Then my uncle said in a more modest way, “Does it look like the hepatic veins are blocked?” I think that’s what we’re after. “
Then my other mother, a realist (and psychotherapist) said: Everyone take a breath. “
And finally, I was the first to read each scan, the first to google each medical term, the first to calculate the growth rate of each tumor. “Her 22.6 percent growth in the right posterior tumor combined with her 20-point increase in her alanine transaminase do not like her. Her disease is getting worse.”
If oncologists were our gods before Cure Rules, after that we try to play god ourselves. We spent his week before the appointment deciphering reports that each gave a different verdict. In many cases, some tumors grew and some did not. Blood tests showed that certain cancer markers were elevated, while others returned to normal ranges. The information we so desperately needed rarely told a pretty story.
A major benefit of treatment reform is that it will improve patients’ ability to make informed treatment decisions and defend themselves in a complex and opaque healthcare system. further away, the study Access to medical records has been found to make patients feel more informed about their care, more likely to be ready for appointments, and more likely to follow clinician advice.
But what if access to information increased without improving our ability to comprehend and synthesize information? What if there is no clinician available to help?
Receiving medical information without an oncologist is shocking, especially when, like my mother’s recent checkup, it turns out that death is near. In fact, cancer is almost always devastating. And the simple fact is that no one can play God except my mother, my other family members, and myself when it comes to cancer. Not even our oncologists. Challenging a situation that is already very painful can make it even more painful.
Advances in treatment technology have improved cancer treatment in many ways. study This indicates that many patients prefer to receive electronic test results even before they meet with their healthcare provider. But for our family, having early access to scan results via the MyMSK app has distracted us from understanding what the results mean for my mother’s cancer progression. It only made me worry more and made it harder for me to be with my mother. Now that my mother has reached the terminal stages of her illness, being present is more important than ever.
So we made a plan. In the final stages of my mother’s cancer, the family opens her CT report together an hour before her meeting with the oncologist. No need to load and reload the MyMSK app, no need to play God. As a family, we will do our best to ride this roller coaster.
