It is funny how life has a way of sending you the biggest challenges at the most unexpected times. You can go from ongoing repetition of the same schedule to “suddenly” finding yourself at your doctor’s office, trying to wrap your head around words like “metastasis” and “oncology.”
My name is Julien, and this is the story of how my life changed in a few short months. I am sharing this not to scare anyone, there is enough of that going around in the world, but to share my cancer experience and, hopefully, to offer a bit of light to anyone finding themselves in a similar situation.
Ignorance is bliss
Looking back, the signs were there, but I was keeping myself too busy to slow down and pay attention. Throughout the summer of 2018, I started to feel… off. I was losing weight, which I initially chalked up to being more active or perhaps just a change in appetite due to the heat. My energy levels were dipping, too. I was always very active, working long days in a somewhat physically demanding job. I thought I was just going through a phase or work was finally catching up with me.
By October, things became impossible to ignore. I noticed a small bulge in my abdomen. It wasn’t painful at first, just a strange, firm presence that shouldn’t have been there. I went in for examinations, no one could figure out what it was, finally my doctor requested a biopsy. Then came the “waiting game”, a month and a half of inconclusive results. Samples were sent to several specialized labs. I didn’t know what to make of it and I started telling myself that it must be nothing since no one could find what it was.
Three words no one wants to hear
While the biopsy specialists were looking at my slides under microscopes, the mass inside me wasn’t waiting. It tripled in size. What was once a “small bulge” was now a significant obstruction. It started pressing against my internal organs, eventually shutting down part of my kidney function.
I was admitted to the hospital in a state of crisis. It was there that the diagnosis finally landed: testicular cancer. But it wasn’t just contained there; it had metastasized. It had traveled to the lymph nodes in my abdomen, chest, and neck, and there were lesions on my liver and lungs.
Hearing that list was beyond hard. I remember having a hard time taking it all in. My partner and I were looking at each other, in shock and having no idea how even to begin to process the information. What do you do with that? It took a while for us to be able to start thinking again. We were both well-versed in alternative therapies, and survival kicked in strong; we would not become victims and would apply everything we had learned to make this go away.
Roller Coaster
We were referred to an oncologist at a local infusion center. My first appointment did nothing to releave any of the fear and stress we were experiencing. Our overworked oncologist walked in, was learning about my case by looking at my folder, likely for the first time. He then asked when my surgery had taken place? At this point I didn’t know that I was going to need surgery, I didn’t even quite understand what my diagnosis was… He seemed frustrated by our questions then quickly sent in a nurse to schedule me for my first infusion. The nurse let me know I would most certainly loose my hair and my nails might fall out followed by “can we get you started on Monday?” I remember we went back to our car and both wept. What the hell just happened? Were was the compassion, understanding, care?
I started infusions, after two rounds the tumors in my abdomen were not visible anymore. I was given some time to recover and due to some administrative issues, I fell through the cracks. I felt pretty good, was doing my part supporting my body with alternative treatments. About a month after the end of my second round of chemo, tumors came back with a vengeance.
I was once more sent to the emergency room at my local hospital, with a severe risk to my kidneys. After a week there, my kidneys were stabilized, but the doctors realized my case was high-risk and I could not be given the same treatment I had received the first time. A nurse who happened to overhear the conversation with our doctors told us of a test group working with a world-renowned oncologist in LA. There were only thirty or so beds and the chances of one being available were less than slim, but it was clear that this was my only option. Calls were made, files were sent over and like a miracle, we were informed that a bed had just opened up and due to the severity of my case, I would be accepted that same night… So there I was in an ambulance being transferred to the USC Norris Cancer Center in Los Angeles.
Specialized Care
Being in a specialized center changes the energy of your treatment. You are surrounded by people who have seen it all. This also happened to be a university hospital, so doctors and nurses were open to questions. My oncologist would have no problem spending 30+ minutes talking to us, answering questions, and making sure we fully understood what was going on during his rounds.
I was put on an intensive regimen, which included 11 hours of infusions in hospital for 7 days, followed by 2 weeks at home to recover. This went on for several months. Fast forward almost a year, I was done with chemo and getting ready for surgery. My final surgery ended up taking 15 hours! I recently shared everything they did with a specialized nurse, and she helped me understand just how miraculous this surgery was. During those intense 15 hours, they removed several tumors, organs, added a Gore-Tex tube to my abdominal aortha and cut my vena cava, just to name a few. Any one of these was already complex but put together in one surgery, it is truly amazing. While this likely feels very long to you as you read this, I am greatly summarizing my experience. The last thing I will say to close this more medical section is that it took several months for my body to recover from the surgery.
The Power of an Integrative Approach
From the very beginning, I knew that I wanted to fight this using every tool available to me. I have a deep respect for traditional medicine; the chemotherapy I received at USC Norris was a vital part of shrinking those masses, but I also believe that the body needs more than just chemicals to heal.
I began incorporating alternative and complementary cancer treatments into my daily routine as much as possible. This wasn’t about choosing “this over that”; it was about “this and that.”
Some of the most powerful support I received came in the form of prayer. My family and friends, and even healers from around the world whom I’ve never met, began a chain of support. I truly believe that this collective intention, this “unifying of hearts and minds”, had a tangible impact on my ability to make it back from the brink of death.
Coming Home and the Role of the Caregiver
Getting home was a victory, but it brought a new set of challenges. Hospital beds are uncomfortable, but they come with a call button and 24/7 staff ready and trained to help. At home, the “call button” was my partner, Melissa.
Melissa has been my rock. She took a leave of absence from her work to be my primary caregiver. The reality of around-the-clock care is something people don’t often talk about. It’s about managing medications, monitoring side effects, making sure I’m eating the right things, and keeping my spirits up when the “chemo fog” sets in. For me Caregivers have it harder than the patients. They see things they can’t unsee, hear things they can’t unhear. They have to be strong when they fall apart and rare are those who allow themselves to take part in a little self-care. Caregivers need to be able to vent, express, and feel their feelings fully, and they need support to do this.
If you are a caregiver or have one, please know that your role is just as vital as the surgeon’s or the oncologist’s. You are the environment in which healing happens. I’ve started putting together a cancer toolkit to help others navigate the physical side of this, but the emotional side is a team effort.
Other challenges
We also had to face the financial reality of a diagnosis like this. Between medical bills, the cost of specialized travel, and the alternative therapies that insurance doesn’t cover, it adds up fast. We started a GoFundMe campaign, and the outpouring of support from our community was humbling. It reminds you that even when you feel isolated by illness, you are part of a much larger web of human connection
Now what?
I want this journey to mean something for someone else. I learned so much and continue to learn every day: about what to eat during treatment, how to manage the side effects of chemo, and how to maintain a positive outlook when the news is tough. That is why I am pretending to know how to write to share with you. Hopefully, this site can help you navigate your own journey with a little less fear and a little more hope.
This journey isn’t over. I’m still here, while I am considered “Cured”, I am now focussed on healing on many different levels, physically, emtionally, mentally and growing spiritually.
Thank you for walking a few steps of this path with me.
Julien