Navigating Patient Advocacy: My Waiting Game Experience

The Waiting Game

I’ve been living in a low-level anxiety alert. Now? Mid-level.

It started with a biopsy on July 3. Over the holiday weekend, I kept it together—no tears, no spirals. I held out for my follow-up appointment on July 9.

MyChart didn’t update. The endoscopy doctor told me:

“It’s small, but I got a piece. It has many layers, so it could be one of three things—benign, cancer, or an IPMN cyst. Pathology will let us know.”

So I waited. I tried to sleep more. I stopped refreshing MyChart first thing in the morning. I snapped at Justin more than I wanted to. The wait was excruciating—but we got through it.

Then Came the Delays

On July 8, the office called at 8:30 a.m. to reschedule.

Okay. Fine.

They moved the appointment to July 16. Seven more days. So we waited—again.

Then on July 15, another call. Another delay. Still “in progress.”

At that point, I lost it.

I refused to reschedule and demanded someone call me back. Twelve days after a biopsy is too long. I felt like I was coming undone.

Meanwhile, our lives were stuck in limbo. We’re supposed to be fixing up our place in Connecticut to rent it out, so we can finalize our move and get on with our life in our new home. Everything is on hold until we get answers.

Finally, a Response (Sort Of)

After pushing, someone finally responded with:

“They’ve ordered additional immunostains. The case is pending review. The pathologist and the fellow have been contacted to expedite. We’ll keep you informed as soon as we receive further updates.”

That’s it. No call, no resolution. Just more waiting.

From Patient to Advocate

Did I advocate for myself enough? I honestly don’t know.

But here’s what I do know: since my father died, and since I was laid off six weeks later, I’ve been reevaluating everything. And one thing has become crystal clear:

Ageism is real.

Especially in advertising. If you’re a woman over 50 and not already an EVP or higher, your position is vulnerable. Disposable, even.

So I started asking: what else am I good at?

What If This Is the Work?

The answer keeps coming back to me: patient advocacy.

I’ve done it for my father. For Justin. For my mother. For myself. For everyone I love. I believe, to my core, that we are the experts on our own bodies. When something feels off, we have to keep asking until someone listens.

I believe patients deserve transparency. Answers. Access to benefits and care without bias—no gender discrimination, no racism, no antisemitism, no gatekeeping.

It fires me up. I don’t know if that’s passion or just frustration boiled over, but I do know this: I want to be louder. I want to turn this experience into something useful.

Maybe this is how.

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