This is me. These are my Lungs.

September 21, 2015.

I moved to London to start a Master’s degree in Legal and Political Theory at University CollegeLondon. I worked my tail off to get into this program, which only  admits twenty-five people annually from around the globe. I uprooted my otherwise stable and fun life working on Capitol Hill in Washington, D.C. to pursue a more focused discipline, and to finally live near my big sister (Jess) and her family.

October 7, 2015.

Everything changed. Jess’s third child, Axel, had just been born (healthy and beautiful) and I had completed my first day of classes. I was experiencing difficulty breathing and feeling generally unwell, so I checked myself into Accident and Emergency (the UK equivalent of the Emergency Room) at St. Thomas Hospital. I suspected I had acquired a malicious virus on the flight to London or developed asthma, but it was immediately apparent that I was up against something far more sinister.

Upon admittance, three different doctors performed a very detailed physical exam, which led them to believe I had tumors in my breasts. They scheduled a visit to the Breast Clinic at Guy’s Hospital the following week to rule this out. This was immediately discounted – which proved to be the only good news that week. A chest x-ray was then performed, which showed a collapsed left lung, lined with 2-3 liters of fluid, the histology of which was unknown. Dr. P, the Pulmonologist, stuck a giant needle in my lung and removed a liter of fluid to check for malignancy. This was Wednesday, and I was told I would know the nature of the fluid, and thus the cause, by Friday. They then performed a chest CT and sent me home – at about 7pm.

The next morning, at 7am, I received an urgent call from Dr. P stating they had unexpectedly discovered a pulmonary embolism (deep vein thrombosis) in my left lung. I was to report immediately to the hospital for treatment. They started me on blood thinners, which I will inject into my stomach for the foreseeable future.

Later that day, a doctor I have never met pulled back the curtain around my bed and asked whether it was Ok to speak to me in front of my parents. Before the words came out of his mouth, I knew I was about to receive the worst news of my life. “Marisa, there is a strong possibility this is cancer”.

Weep.

The next morning was Friday and they had not yet determined the nature of the fluid, but I knew it was cancer. I just knew. I increasingly required oxygen, so they kept me in the hospital another five days.

October 13, 2015.

Dr. P and a new doctor approach me and asked to speak to my parents and I in another room. I knew what was coming. They told us that I have advanced, metastatic lung cancer, likely driven by a genetic mutation. I was told I needed to begin treatment as soon as the molecular results were in, and I should be near family and friends because it was going to be a difficult road.

Unfortunately, my lungs were not in good enough shape to fly back to the U.S., but the cancer was growing fast, so I considered doing the first round of treatment in the UK. To this end, I was transferred to the oncology ward at Guy’s hospital, the tallest hospital in Europe! This place may have height on its side, but it is wholly depressing. I was there for one day, during which I was paid a visit by the first of my dream oncology team, Dr. W. He explained to me that the cancer was not curable but that he was also hopeful I had a genetic mutation driving the cells. Scientists have identified four possible mutations: EGFR, ALK, ROS1 and K-RAS. While the first three can be treated, there is no approved therapy for K-RAS, the most prevalent.

Having received so much bad news sequentially, I was sure that I did not have one of these favorable mutations that often afflict young women who are non-smokers. I began preparing myself for chemotherapy and the chance that I might not see my 32nd birthday (at that time, I was days away from turning 31).

Things were really somber, so I begged to be sent home. I needed to see my nieces and nephew and sleep in a real bed. They arranged for an oxygen tank to be delivered to the house, and I was discharged.

On Thursday, I went to the outpatient oncology unit at Guy’s to meet with the oncology team and receive the results of my genetics test. They performed a chest x-ray before the appointment, which showed increased levels of fluid. Three-quarters of the left lung and half of the right lung were lined with fluid (they call it a pleural effusion). The cells inside were ninety percent malignant. This scared me shitless. The cancer was growing rapidly and I could barely walk.

That day, we met with the second member of my dream team, Dr. K, as well as Dr. W. We expected to receive the results of the genetics test, but they were not yet available. I needed to wait five more days. However, my family agrees that Dr. K changed the course of events that day by telling me very definitively these two things: “Marisa, the cancer has not spread; Marisa you will have one of these mutations”. She then went on to tell me I was beautiful and that she needed to find me a boyfriend in London, where I should undergo treatment so that I can return to school. Obviously, she’s now one of my favorite people. She put the control back in my hands. She gave me hope. I will never forget her.

October 20, 2015.

We returned to Guy’s for a 4pm appointment, where I would finally learn the results of the genetic analysis.  As I waited in the reception area, Dr. K warmly approached me, put her arms around me and said, “Marisa, I have good news for you today”.

Back in the room, I was told I have the rarest of the options, a ROS1 re-arrangement of my DNA, found in 1 percent of lung cancer patients.

“Marisa there is a treatment, but it is not available through NHS. I have arranged for you to see a private doctor (Dr. S…another amazing individual) in one hour, and he will administer the treatment.”

10,000 drug dollars later, I’m sitting here writing this summary, feeling so grateful for the magic pill that made me feel better within three days. Unfortunately, I will eventually develop a resistance to it, so this only buys me time. But, that’s all I ever wanted.

What have I learned? Be kind to your family and friends, treasure the small moments, and forget the shit that doesn’t matter.

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