IV. Rosey Outlook

 

 

MY FAVORITE THING about going to appointments at 34th and 3rd is taking the ferry back to Brooklyn. On supremely sunny days, there’s nothing better than feeling the warmth of the sun and the wind in your hair while staring out across the water to the beautiful skyline. Bonus points for perfectly timing things with an epic sunset. The gradations in the sky, the glimmer on the water, the rose gold reflections on the buildings… That magnificent Golden Hour, especially in the summer, is truly capitvating. That old adage is true: pink skies at night, sailor’s delight.

The ferry docked in DUMBO and I took my mom to some of my favorite spots before we sat on the pier along the park to reflect. Our days were long and nights still somewhat restless from the summer humidity and makeshift sleeping arrangements—it’s safe to say we were both exhausted. In the two days that preceded, so much had happened; it’s all blurring together now.

By trade, my mom is an RN—formerly a long-time staff nurse taking care of patients bedside, but now a nurse informaticist. She essentially charts, analyzes, and delivers data to improve hospital care [among other things]. It’s no surprise that as we peeled back the layers of this diagnosis, we were taking a very analytical and patient-centered approach to this whole situation.

We started by researching the heck out of things. My mom was tackling the medical journals—making lists and charts of data categorizing staging, treatment methods, and outcomes for comparison. Unfortunately, there wasn’t that much out there since it’s so rare and there aren’t really enough cases to do in-depth research or comparative studies. Of what exists, it’s mostly just retrospective analysis on documented outcomes of all stages over the last 35 years, which makes it tricky to figure out if, say, chemo is crucial to a Stage IIa treatment plan. The treatment methods even just 20 years ago seem barbaric compared to today’s standards.

Now that we knew what we were dealing with though, we were diving into the intricacies of the various treatment methods—things like neoadjuvant vs. adjuvant radiation therapy, muscle transfers, the chemo-reactivity, T-cell immunotherapy trials, fertility impacts, and so on. We were tracking down the doctors leading synovial sarcoma studies: watching videos of them presenting their findings, reading their research papers, and ultimately booking appointments with them for second and third opinions. We became quick experts devouring every piece of research out there that spoke to my condition.

We were also calling on friends and family who had some knowledge and experience with cancer matters. What did radiation actually entail? What does it really feel like? [Thank you, Andrea, for answering all my Qs.] The first-hand accounts and experiences were so important to deciding what feels right to me as the patient. In my deep dives on the internet, I also found a detailed blog from a 30-year old synovial sarcoma patient of Dr. R’s, which was incredibly helpful to understanding the implications of his specific approach and the real consequences on my well-being. The impacts of an aggressive chemo regimen on a single, 29-year old woman were very different from those on a retired man with two kids—a consideration that seemed overlooked in The Treatment Plan.

As we combed through the data, we each had lists and to-dos in our phones and notebooks — we were tag-teaming this operation like a job; it could’ve been run on Basecamp with assigned tasks, scheduled reminders, and follow-ups. My mom was managing communications, organizing appointments, investigating housing options, fielding messages from a select group of friends and family, all while keeping things on the d/l with my sisters. Did I mention that she’s a superhero? My dad was manning the fort at home—also a superhero—meanwhile looking to see if chemo infusions or radiation treatments were feasible closer to home where I could rest up and recover under their care.

 

Even as someone who’s fairly independent

and hates to impose on others,

I knew I needed to let others help.

 

Interspersed in all the craziness, we were making time for fun things, even if it meant taking calls with Sloan-Kettering on the steps of the Met. Thinking back, I don’t know how we crammed appointments, research, and fun into just a few short days, but I’m really glad we made the most of our time together. We toured the Manus × Machina show [alongside Andrew Bolton, no less!], window-shopped Fifth Avenue, strolled through Central Park, dined al fresco at Rosemary’s, thrifted the Brooklyn Flea, took in my old neighborhood next to Prospect Park, and more. It was so nice to have my mom here and be able to make some good memories despite the circumstances.

Another favorite highlight was a self-initiated holiday: Take-Your-Mom-to-Work Day! My mom peeked in [between doctors’ calls] while I signed off on the final cover and endpaper proofs at HarperCollins for Celebrate Everything!, an entertaining and ideas book I had been designing in the months prior. It was so fun for her to see what I do day-to-day and also meet one of her favorite inspiring ladies, Darcy Miller, the author of the book and my former editor at Martha Stewart Weddings. Darcy has a heart of gold and truly lives by the namesake motto of her book: ‘life is short, celebrate everything!’ The perfect reminder and comrad through all of this.


Post-PET, we celebrated the good news and counted our blessings with a beautiful bottle of rosé. Our ritual in the days since included a communion on the day’s progress and next steps with a glass of wine, homemade bread [thank you, Jeff!], and a smorgasbord of cheese, fruit, and other snacks. Most certainly I would be content to eat this on repeat for the rest of my life.

We were making strides in what made sense for me. We felt great about the innovative direction of the orthopedic oncologist and his tandem approach with the reconstructive surgeon. Many things still up in the air from the other oncologists, but we were chipping away at the order of operations. A marathon of appointments the following week would provided second and third opinions plus more insights on chemo, radiation, and fertility. Amidst the unknowns, we decidedly chose to focus on the things we can control: attitude and general well-being. With that, I put on my rose-colored glasses and got my stress levels in check. Yes way, rosé. [Thank you, wine + meditation.]

 

There are always flowers for those who wish to see them.

Henri Matisse

 

As my mom’s trip came to an end, we closed things out at the Brooklyn Botanical Gardens, not quite 5 blocks from Jeff and Hillary’s apartment where we were so gratefully camped out and perhaps overstaying our welcome. It was peak week in the rose garden—the poetic semblance was not lost on me. We were going to stop and smell the roses. And we did just that. A lovely morning and symbolic reminder of life’s delicate nature and the love, courage, gratitude, and strength needed in the coming months. Maybe I’ll make this an annual tradition: a way to celebrate this journey, the rosey outlook that got us through, and the pink skies [hopefully] up ahead.