News from Jules | 11.21.2022 | On the Road: Part 2
Three weeks ago, when I wrote to you from the Small World Coffee shop in Princeton, New Jersey, I had been on the road for just over 24 hours. I had just been through a lot. And a lot more has happened since then.
I was generally uncomfortable with moments of pain, but I couldn’t tell what was what with my body. Was I still just sore, swollen, bloated, and crampy from the laparoscopic surgery? Was it from hours of sitting upright while driving, going for an “easy” hike with my friend, or sleeping on his couch? And/or was it the hard wooden bench of the coffee shop?
Later that night I jokingly mentioned to my hostess in Philadelphia that it felt like the doctors’ moved my bladder during the surgery and it was in the wrong spot. But, then I didn’t really know where my bladder usually was.
The next night in Potomac, Maryland, it got worse. As I sat by the fire pit in my friends’ backyard, I had that woozy feeling flush through my veins. Sure enough, my temperature was higher than usual. So I stayed in bed the next day before continuing on to my next friends’ condo in Washington, D.C. I continued to lay low, but on the third feverish day, I got worried it wasn’t just a cold or flu or urinary tract infection or COVID-19 (I tested negative).
So did the Urgent Care doctor. “I don’t like any of this,” she repeated over and over as she listened to my story and I spiked from 97.7 to 101 degrees during my two-hour visit.
She told me to go directly to the Emergency Room (ER) a mile away at MedStar Washington Hospital, the closest and largest inner city hospital in D.C. with nearly 1,000 beds. I returned to my friends’ condo to let the dog out, drop off their keys and pack an overnight bag, just in case.
Unfortunately, I was right.
After sitting in the ER waiting room for 10 hours with a 102-degree temperature, I finally had a computerized tomography (CT) scan that revealed an 11.8-centimeter growth the size of a softball inside my pelvis. For the next two exhausting days in the ER and three endless days by myself in the hospital’s surgical ward, they took countless blood samples and poked five different IVs. They painfully pumped my little veins full of antibiotics around the clock to attack what they thought was a puss-filled pelvic abscess. If an infection leaks into the bloodstream and goes to sepsis, the mortality rate is 50 percent.
A few ER and hospital visits and supply drop-offs from my close friends in D.C., texting regularly with a retired doctor and our lifetime family friends, smoothie deliveries from a GrubHub gift card, a few calls from long-distance friends, photos of nature from friends adventuring all over the country, and my M.V.P. nurse who snuck me outside one night, kept my spirits up while I was hanging in there.
The stakes felt incredibly high.
But, the six doctors and dozens of charge nurses, shift nurses, and technicians noted how my fever and vitals remained stable. My white blood cell count was dropping back toward normal. I wasn’t writhing in pain. I was up and walking around regularly unlike all the other patients.
I felt like a patient on that TV show, “House,” where they can’t figure out what’s wrong. None of it added up. But, I could only push back on the doctors so many times until they informed me I was being discharged.
The day after discharge, I finally spoke to my original gynecological surgeon on the phone. All four doctors I consulted for second opinions that day agreed: If it was really an abscess then at home, oral antibiotic treatment wouldn’t work. They all wondered, why didn’t they attempt to drain it?
“This is unacceptable,” my OBGYN said. “How soon can you get back to New York?”
The following day, we repacked everything into my car and my friend took a sick day to drive me the six hours back to New York. Arriving that evening, we checked into the oldest inn in America, poked around Rhinebeck, NY, and relished every minute of freedom before she dropped me off at 9 a.m. in the Emergency Room of Northern Dutchess Hospital, a comparatively small country hospital with around 100 beds. While still sterile and scary, the care was night and day from the inner city.
Within a few hours and with even more data, the radiologists came in to explain their proposed procedure to me. They were surprised to see my OBGYN down in the ER with me on his operating day.
“This is my focus today.”
He came back down between operations while they conducted the CT-guided drain. He was the only person in the room I knew.
Lying facedown on the CT table with my hospital gown wide open as several anonymous nurses assisted doctors—who I just met 15 minutes earlier—to carefully insert a five-inch needle through my right butt cheek to reach the growth nestled beside my uterus. It was the most vulnerable I can remember feeling since birth. My weakest moment.
Could I do this?
As a way to cope, my mind searched for other hard things I’d done and I remembered attempting Mt. Hood last year. I mentally retraced leading the charge one steep snowy step after another and tried to breathe just as slowly. Except I didn’t actually feel capable or strong or bold like when I climbed. I just felt scared and in pain. I didn’t have the energy to let my mind or my ego mask the raw intensity with hubris.
Instead, I fully surrendered.
I had to trust that I was held by something greater than all of us. That I was safe, secure, and grounded. As fragile and strong as the day I was born. Arms outstretched over my head, I squeezed my teddy bear in one hand and some nurse’s hand in the other every time they pulled more fluid.
They removed a small amount of dark, viscous fluid from the growth that was later confirmed negative for infection. Instead, the diagnosis was one or more hematomas, or pools of mostly clotted blood usually caused by a broken blood vessel, that my body could slowly resolve on its own, unmedicated.
The largest—now shrunk to a baseball instead of a softball—was situated in my “Pouch of Douglas,” the tissue around my uterus and between my rectum and bladder, in my pelvis which I Googled while the ER doctor airdropped my CT scans to my iPhone for further explanation. No wonder it felt like my organs were in the wrong spot.
A totally different prognosis and significantly lower risk.
How it happened or why so long after the surgery is unclear. Perhaps it was something related to the blood-filled ovarian cysts they originally drained or to the Endometriosis they discovered in my severely inflamed pelvic bowl. Given the timing and IUD removal during the original surgery, it’s also possible that my cycle restarted and one of the other cysts or endometriomas ruptured during ovulation causing the internal bleeding.
Maybe it was a surgery-related complication. Or maybe it would have happened regardless.
We’ll never know.
There is a complicated world happening inside of us every breathing moment that we can never fully understand, simply revere.
After two nights in the hospital in NY, I was discharged and cleared to travel. For the second time in a week, I drove myself rattled and grateful away from the hospital to my next stop. Returning to the hotel a half-mile down the road in the center of Rhinebeck, I was alone and back where I had started.
This was not the road trip I imagined or signed up for.
What about all the fun hangouts with close friends and sightseeing in new places?
After a long bath, a deep cry, and another fitful night, I accepted that I was not getting to the South after all. I was not going to see one of my best friends in NC or my aunt and uncle, and cousins in SC. I was not going to lay on the beach near the Airbnb I booked in Charleston. I couldn’t keep driving and moving beds every night while my body, mind, and spirit needed to heal from so much.
Another best friend and family in Denver, Colorado—where I was already planning to be on Thanksgiving—generously doubled down on their invitation: “Just come now. Stay as long as you need to rest and recover.” If I could get my car to his brother’s house in Philadelphia, my friend could pick up my car and drive it back to Denver for me after Thanksgiving.
So, I immediately bought a plane ticket with airline miles, checked out of the hotel, and once again drove south through New York and New Jersey, and back to Philly. My flight arrived in Denver last Thursday under a fresh coat of snow as a cold front moved across the country. Perhaps ushering us all from fall to winter early so that the deep rest and recovery necessary for everyone this season starts during Thanksgiving.
After several days of waking up in the same place and breathing in the fresh mountain air, my body is starting to regulate, my mind is starting to understand what happened and my spirit is starting to sense meaning in it all.
I am especially humbled and grateful to be alive.
I still have no idea what is happening in this miraculous body or what tomorrow will bring.
I am simply trying to listen and take it one day at a time.
May you rest fully within the uncertainty this week.
Love,
Jules
P.S. Follow along on Instagram Stories to see what’s happening in real-time.