Meredith's Musings

….and Next Steps

It’s taken about seven weeks to focus enough to write anything down.

I spent three days in the ICU, twelve days total in the hospital. I ate for the first time on day nine, and by day eleven, I was eating more and discharged the next day.

The Whipple hurts. It goes deep — they cut through your core and stitch you back together from the inside out. My surgeon was incredible; the incision line is barely visible considering the magnitude of the surgery.

Eating Post-Whipple

Those first days of “eating” were not what I expected. After ten days of no food, I thought I’d be ravenous. I wasn’t. My body had to relearn what to do with food, medication, and insulin. Even simple things — shifting in bed, walking the hallway — felt monumental.

Surprisingly, eating hasn’t been as hard as I feared. I’m amazed at what I can tolerate: almost anything within reason — no ice cream, creamy soups, or heavy sauces — but lots of protein drinks, vegetables, and low-carb meals. The variety surprises me. I graze all day, eating four to six small meals. Justin’s on board with the new diet too, and it’s proving healthy for both of us.

I’ve started jotting down recipes from this recovery journey — a “Whipple Cookbook,” of sorts — because anyone facing this surgery has the same questions.

I also joined a Facebook group, which has been a lifeline. They answer everything from “How does Creon work?” to “Can I have coffee again?” There was nothing like this when Mom passed 21 years ago. Facebook didn’t exist, and Whipple surgeries were rare back in the late 90s/early 00s.

High & Low grade IPMN cancer cyst, and next steps – (spoilers: we’re waiting)

And now, the big news: it was cancer — tiny, stage 1A cancer.  The pathology results showed a 9 mm (less than 1 cm) tumor in the pancreatic duct — an IPMN cyst with both low- and high-grade dysplasia, literally turning cancerous as we removed it. No lymph nodes were affected. No spread to other organs. As a precaution, they also removed my gallbladder, the Ampulla of Vater, and the head of my pancreas (what was left of it).

The Whipple was absolutely necessary, and now chemo is on the table. But this time, we’re calm. No panic — just deliberate, thoughtful next steps.

Here’s what the doctors say so far:

• Doctor #1: No chemo — just close surveillance with scans and a new test called ctDNA, which monitors my DNA for early warning signs before anything shows on a cat scan.
• Doctor #2: Six months of aggressive chemo — port infusions plus oral pills (Gemzar + Xeloda) three weeks on, one week off.
• My Florida surgeon: Three months of chemo — port infusions plus pills (Gemzar + Abraxane).

This week, we’re heading to Mayo Clinic in Jacksonville for a final opinion. If needed, we’ll also consult Moffitt in Tampa.  The decision will be made soon so we can start treatment and go on with our lives.

Dr. Diane Simeone, my original surgeon from NYU, has been in touch and will help guide the decision. She’s now the head of UCSD’s Cancer Center and no longer operates — but she remains the captain of my specific Pancreatic Cancer Journey boat.

The Poster Child I guess

I could be considered the poster child for her early-detection program, which uses surveillance and DNA sequencing to find pancreatic cancer early. The study now spans the globe.

And — this feels full circle — I’ve been confirmed as the first speaker at next year’s PRECEDE Conference in San Diego. I said I wanted to speak about early detection. Well, first date is officially in the books.

Until I get more information, this is all I know. I thank everyone for their prayers and thoughts. It’s been helping me more than you know.