As If It Never Happened
“If we don’t operate, you will die.” He cushioned the words with his calming demeanor, but for a moment, I felt as if my body had left the room. I’m dying. I’m actually dying. My body is trying to kill itself.
The BRCA mutation is fickle. As soon as the bloodwork comes back with a positive result, the mutation’s maintenance is a full time job. An otherwise young and healthy person is thrown overnight into a series of ultrasounds, MRIs, mammograms, and OB/GYN appointments. There are a myriad of decisions to be made: birth plans, potential prophylactic surgeries, pharmacological changes, biopsy examinations, contraceptive choices, and more. When my gynecologist told me that I was BRCA2+, and more prone to feminine cancers, I couldn’t imagine it would lead to me laying in quarantine at Lenox Hill, waiting to die.
I elected to undergo a prophylactic double mastectomy with immediate DIEP flap reconstruction, in the spring of 2019. In a pre-COVID world, this was fairly easy to schedule and arrange. I would arrive at Lenox Hill in the wee hours of the morning, talk to a variety of surgical and anesthetic specialists, and then go under for ten to twelve hours. In that time, they would remove the entire anatomy of my breasts (including my five benign tumors), keeping the outer shell and nipples in tact, and then in the same surgery, reconstruct my breasts using the fat from my stomach. It’s not a particularly risky operation, but it’s highly specialized and tedious. It requires a series of micro-surgical connections that are only done by a handful of doctors. My plastic surgeon was known internationally for this particular methodology, and I was lucky to be in his care. He always made me feel like I was an important part of his day.
The first few days of recovery were painful, but normal. I went home by the end of the week, and my mother and I proceeded to fall down the rabbit hole that is The Amazing Race. While the contestants fished in an Indonesian market or built a scale replica of a Buddhist temple, my body began to heal. I was told that sharp or phantom pains could occur in the recovery process, so when one of my abdominal drains started stinging, I took some Oxy and called it a night.
Sepsis is a very unusual feeling. The fever is disorienting, and the shakes are violent, but it’s the resting heart rate over 120 that caused me the most distress. My abdomen was rigid for days on end. The antibiotics would work in waves. I laid in bed, staring out the window, watching New York happening outside.
Renal failure hurts everywhere and nowhere. It’s a torturous cycle of muscle pain, lethargy, vomiting, and immobility. Why was my body doing this? Why was it getting worse? When will this end?
MRSA is a beast. Methicillin-resistant Staphylococcus aureus. It was killing me, one organ system at a time. MRSA is an incurable Staph infection, whose most distinctive feature is that every attempt you make to treat it will be greeted with the MRSA recognizing your attempt, and raising you a violent reaction that is not propotional at all. To be fair, if someone tried to kill me with antibiotics, I might throw a temper tantrum, too. But it’s still excessive to shut down someone’s kidneys. Regardless, MRSA is highly contagious, and I was moved into an indefinite quarantine.
Hospital quarantine is like a never-ending heartache. It’s not the “quarantine” that the pandemic asked of us. It’s sterile, and empty, and lonely in a way that I can’t truly describe. I remember every little moment. When the nurse brought me a therapy dog I couldn’t touch. When I took a walk down the hall and a nurse complimented my boat shoes. When a man washing the windows woke me up from a nap. The way the hospital soap smelled. Every time my nurse called me “boss”. Every time I looked out my Park Avenue window to see someone playing basketball across the street. Every time I got stuck with a needle, or tried to walk, or cried myself to sleep, or couldn’t explain where the pain was… I remember it all.
The MRSA was so insidious and relentless, that when my surgeon told me the punchline, I had no reaction except to let the chips fall. “If we don’t operate, you will die.” He cushioned the words with his calming demeanor, but for a moment, I felt as if my body had left the room. I’m dying. I’m actually dying. My body is trying to kill itself. There was no resistance. There was no discussion. Whichever way this story ended, I just wanted it to be done. I only had days left of my sanity, and apparently, of my life.
The gratitude to be alive is so overwhelming that if I think on it for too long, I can’t recover the rest of my day from the inexorable crying. I walk through the streets of New York as though I’ve never seen steam come from a sewer grate, or a pigeon land on a bench, or couples take photos on Gapstow Bridge. I don’t recognize my reflection in store windows. Standing on the steps of the MET is the most exciting thing I’ve done in years. It makes no sense. This was my life before. Why does it feel like I haven’t even lived it yet? Where does the monotony of quarantine fall away? When does this second chance get started? Who am I and what have I done with Claire? Every day is a gift and a burden. It’s been constant limbo and celebration. My entire existence is a swirl of confusion, gratitude, surreality, and fear. I have a second chance at life, but I often have trouble even comprehending the concept of having survived.
And then sometimes, I’m eating dinner on a Thursday, and it’s as if it never happened.