Ovarian cancer and my mother

My mom, Julie, was diagnosed with stage 4 ovarian cancer in the fall of 2017. I was 21, just months after my first legal drink, when I was diagnosed. She has since undergone a nine-hour surgery, six rounds of chemotherapy, three recurrences and two clinical trials. It’s been five years of pain, fear and love so bright it’s blinding.

The Cancer roller coaster is made of ups and downs and 360 degree flips. And yet, in my mind, his treatment clearly breaks down into two phases. These phases are not divided by surgeries or chemotherapy or vacations spent wondering if they would be his last, but by a shift in federal health care policy.

In April 2021, a national rule,part of the 21st Century Cures Act, went into effect, requiring U.S. healthcare providers to give patients timely and comprehensive access to medical information in their electronic medical records, free of charge. For our family, the rule of remedies split my mother’s cancer in half.

Phase 1 was defined by waiting. In this phase of my mother’s cancer, Scan Weeks began with blood tests to measure cancer markers and organ functions. Then come his scanner, his tumors measured to the nearest centimeter, the results recorded in radiology reports that we had never read. After the scan came the wait.

So much cancer awaits. No naming convention is smarter than that of the “waiting room” of the hospital. Bodies sit in liminality, caught between their diagnoses and their lives. As we, the Julie team, waited for our oncologist to reveal the results of my mother’s latest scan, we were flooded with acute anxiety. Without information, it seemed impossible to plan, to foresee, to prepare.

And then: Judgment. Heaven or hell. Tumor shrinkage or tumor growth. The moment was cataclysmic, defining, often devastating. Making decisions in shock is difficult, but when test results come out and treatment decisions are made in the same 30-minute appointment, it’s exceptionally difficult. We have often done just that.

When the cure-all rule went into effect, we entered stage 2 of my mother’s cancer. This was also a new phase for Memorial Sloan Kettering Cancer Center’s “MyMSK” app. MyMSK launched in February 2015but it wasn’t until the Cures Rule that the hospital began posting X-ray reports as soon as they were available through the app, often just hours after the exam and days before the appointment. fateful with our oncologist.

At first, the Julie team was over the moon. No more waiting. No more Judgment Day. The instant information felt like balm for the endless list of unknowns that come with cancer and we were desperate for relief. For the first time, I downloaded the MyMSK app on my phone.

Scan Weeks have taken on a new form. Now my mother’s CT results have been recorded and published in reports for us to read the same day. I spent those days loading and reloading the MyMSK app on my phone, waiting for the results. The moment the app revealed that a new CT report was available, my stomach leapt. A complete 360 ​​degree flip of a roller coaster condensed into a single instant.

As Phase 2 continued, loading and reloading the MyMSK app became a nervous habit. Stopped at a red light, from the cabin of a public bathroom, while lying in bed watching TV, I was loading and reloading the app, waiting for updated results. My obsession reminded me to repeatedly refresh my Instagram feed after a particularly painful breakup. It was compulsive and isolating. I canceled the plans when the CT reports appeared and spent my time trying to decode the results. Buried so deeply in my projection of future loss, I began to slip away from the present.

There was a fundamental flaw in my obsession, a flaw revealed in the very first line of every CT report: “Clinical Statement: Ovarian Cancer.” These reports were written and intended to be read by clinicians, and neither I nor any of the Julie team could call ourselves that.

After reading the results separately, Team Julie would reunite.

“Oh thank God!” My mother began our common telephone conversations, still optimistic: “My tumors have not grown This a lot!”

Then my uncle, more conservative: “Does it look like a clogged hepatic vein?” I think that’s what we’re looking for.

Then my other mum, the pragmatist (and psychotherapist): “It seems that the tumors have grown, but we expected it. Everyone breathes. »

And finally, me, the first to read each scan, the first to google each medical term, the first to calculate the percentage growth of each tumor: “The 22.6% tumor growth on the right posterior combined with the 20 point increase in her alanine transaminase, I don’t like it. She’s getting sicker and sicker.

If before the rule of cures our oncologist was our God, then after that we started trying to play God ourselves. We spent the week before an appointment deciphering the reports, each with different judgments. Often, some tumors had grown and others had not. Blood tests revealed that some cancer markers increased and others fell back into the normal range. The information, which we had longed for, rarely told a story of its own.

One of the key benefits of the Cures Act update is an increase in patients’ ability to make well-informed treatment decisions and defend themselves in a complex and often opaque medical system. Further away, studies have shown that access to medical records makes patients feel better informed about their care, better prepared for appointments, and more likely to follow their clinician’s advice.

But what happens when access to information is increased without improving our ability to understand or synthesize it? What happens when patients receive long-awaited medical records and lab results without any clinician helping them decode and demystify them?

Receiving medical information without our oncologist, especially when it reveals – as my mother’s last scan did – that death is approaching, is devastating. In truth, cancer is almost always devastating. And the simple fact is, when it comes to cancer, no one can play God, not my mom, my other family members, or myself. Not even our oncologist. It can add pain to an already deeply painful situation to try.

Technological advancements driven by the Cures Rule have improved cancer care in many ways, with a recent study showing that many patients prefer to receive test results electronically, before even meeting with their providers. But for our family, early access to the test results through the MyMSK app only increased our anxiety and made it harder to stay present with my mom, keeping us preoccupied trying to figure out what the results mean for the progression of his cancer. Now that my mom is in the final stages of her illness, being there is more important than ever.

So we came up with a plan. In this final stage of my mom’s cancer, our family will open the CT reports together, an hour before we meet with our oncologist. There will be no loading or reloading of the MyMSK app, no game to God – we will be one family, navigating this roller coaster as best we can.

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