My Cancer Journey
After four years of cancer treatment and fighting for my life as well as fighting the ever-changing symptoms of Stage 4 lung cancer, I can safely say that I am in the clear now. And can finally get back to my life, detailing it here in my Blog.
A lot has changed over the past four years, including my website and my aesthetic. But before we get into all of that, let's recap my cancer journey.
Four years ago, I was fighting allergies that no Doctor could explain or treat. And the symptoms kept getting worse. When we went on a road trip, my back pain was exacerbated to the point where I didn’t know if I could drive. I had been losing weight rapidly and didn’t know what was going on. Then, at a local event, I felt so winded and out of it that I almost called a paramedic over. That very night I ended up in the emergency room after throwing up blood clots. They took one look at my scans and wheeled me into the back where they very bluntly told me I had cancer.
I ended up staying in the hospital for four days while they ran a battery of tests. And at the end of it, I had an oncologist and a very bleak outlook. I didn’t know what was going to happen. They diagnosed me with breast cancer and ALK+ lung cancer. The breast cancer required surgery and radiation, and I can safely say that after the treatments I was cleared of that issue.
The ALK+ lung cancer was another story. It was stage 4, having spread to my spine and my liver. This cancer is an NSCLC (non-small cell lung cancer) that is a genetic mutation of the ALK gene. Anyone can get it; it is not genetic; it's found in about 2–5% of non-small cell lung cancers (NSCLC). Smoking is not a prerequisite. I had never smoked, so this came as a surprise to me.
The ALK gene (short for anaplastic lymphoma kinase) is a normal gene that everyone is born with. During fetal development, it supports the nervous system's development. In healthy adults, the ALK gene is usually inactive or only minimally active. In some people, however, a mistake occurs in a lung cell's DNA. The ALK gene becomes fused to another gene (most commonly EML4), creating an ALK fusion or ALK rearrangement. This fusion acts like a light switch that gets stuck in the "on" position, sending constant signals telling the cell to grow and divide—even when it shouldn't. Over time, those abnormal cells become cancer.
I was put on an inhibitor called Alecensa (alecnitib) that targets this specific type of cancer and is not chemotherapy. It is designed specifically to block the abnormal ALK protein. By turning off those faulty growth signals, it can shrink tumors and keep the cancer under control for long periods.
It worked almost immediately for me. I started taking it in August of 2022, and by October, before my breast lumpectomy, the tumors in my lungs had shrunk. By the following year, the cancer was no longer in my spine or liver and was contained in one lung. And by last November I was completely clear of all cancer. I have had two scans that told me I am in the clear, in remission. ALK patients don’t generally use the word remission because we are always taking the medication and it could come back. There is also a 31% chance that it can reach my brain at some point.
The symptoms were horrible, and each seemed to take turns with me, from exhaustion, nausea and vomiting, dizziness, falling, headaches, backaches, and general malaise. Luckily, I didn’t get the symptom of immediate burning of my skin in the sun, so I guess I'm not a vampire.
I lost a good number of friends to this chronic disease when their bodies didn’t work with the treatments as well as mine did. And many of my friends did go on to have the tumors show up in their brain. I am crossing my fingers and toes on that one.
During these four years, I couldn’t do much, and my world really shrank down to being home in bed and going to work part-time. I lost my enthusiasm for life and my hope in the future. But after the clear scan in November 2025, things started to turn around for the better. I was less symptomatic, and my energy started to improve. My desire to write has returned, as my love of film and art. I started writing my debut novel, Echo, because of the need to get it down on paper before things took a turn for the worse.
By my second clear scan, in May 2026, I had the deep desire to change everything around me. What I once loved no longer served me. Where I live, what I wear, to the very minute detail of what I own and what I do. So, I am in what I call Project Reset, where I am reimagining who I can be, what I want, what I don’t need, and what I want to discard so that I can become a new version of myself.
I hope to document that journey here and on my YouTube channel Sophie.Reimagined. I am working on my debut novel, have several other books to write after it, and a world to build, an intellectual property called Myth and Marrow. I am also working on getting my mom's art to galleries, with prints available for purchase, so that her legacy can survive. This cancer is a chronic condition now, thanks to the strides in the advancement of cancer care, so I should be able to proceed with all these changes realistically.
