This story begins earlier this year, in February to be exact. At this point, it had been just over a year since my chemotherapy was halted.
Let me now rewind this story to February 2021 to catch everyone up. I’m so sorry for the big gap with updates here. You’ll soon understand why as you read on.
It is now early February 2021 and after 6 rounds of very intense chemotherapy under the FOLFIRINOX regimen, my Oncologist gave me the news that the treatment didn’t move the needle and my CT scans revealed that the tumor on the head of my pancreas remained stable in size. On the one hand, such intense chemotherapy is meant to attack and hopefully reduce the size of the tumor, but on the other hand, it was also a good sign that it did not progress. Based on my Oncologist’s experience, he advised that we stop treatment for now and reassess in 5-6 months if there was any major changes.
I was understandably elated with this plan because the chemotherapy was becoming very tiresome and the nausea was really starting to get to me in the later rounds. All I took from this was not having to do any more chemo and I ran away like a bandit to continue living my life as normally as possible.
Around this time, I was a spectator from afar of my mother’s own cancer battle which she ultimately succumbed to in the following month (March 2021). The pandemic was in full bloom as well and I just about managed to make my way to the Philippines from Sri Lanka to attend her funeral and pay my final respects, immunocompromised and all.
I spent some time with my family after the funeral and eventually returned to Sri Lanka several weeks later to try and live normally, just like my Oncologist prescribed. My strength began to return, my hair started to grow back (although it never really fell during chemo, I just cut it short prematurely!), and I was starting to be my old self again.
A few months later, June 2021 to be exact, was judgment day. I did another CT scan and it showed the tumor continued to remain stable in size. My Oncologist’s hunch was spot on. Without any treatment, the tumor seemed to be at bay so there was very little benefit in continuing any chemotherapy if the tumor remained the same size. In addition to the fact that it was inoperable and I was not a candidate for radiation or immunotherapy, the only course of action was to do nothing.
Nothing.
I was elated. I don’t know if I’ve been happier than this moment in my life, ever. Don’t you worry, my wife is going to be angry with me that this news even trumped the jubilation from our Wedding day. Sorry, babe!
Within a few weeks, my wife and I booked tickets and flew halfway across the world to spend the summer in New York with my wife’s cousins. Summer 2021 was when everyone was starting to be fully vaccinated from COVID-19 and mask mandates were starting to drop along with the warm clothing from the concluding Winter and Spring seasons. The “hot vaxxed Summer” was here and I was ready for my days in the sunshine. WOOHOO!
Time was flying and our glorious Summer in New York eventually came to an end. We found ourselves back home in Sri Lanka and I wanted more. I craved the life I had before the pandemic and my diagnosis.
Our bags were barely unpacked before we planned another trip to Dubai for my 34th birthday (later in December 2021) while we did several local trips to the glorious beaches of Sri Lanka in between to satiate the growing wanderlust. I was working really hard at my full-time job as well and despite my stress levels hitting the peak at times, I comforted myself with the reminder that this was all 100x better than being in chemotherapy.
I remember ringing in my 34th birthday sitting in a cabana at a beach club in Dubai. All I wanted was peace and quiet to find some tranquility after months of stressful work. After moving so fast for the last 6 months, I savored this moment of stillness to catch my breath.
As soon we got home from Dubai, the clock resumed its breakneck speed. Christmas and New Year zoomed by and it was now February 2022.
Alright, you should now all be caught up!
My Oncologist had instructed me to get CT scans done every 6 months so we can keep tabs on the tumor in my pancreas.
To everyone’s surprise, the CT scan I did this time around revealed a reduction in the tumor compared to my last scan in June 2021. Sitting across from my Oncologist, I remember distinctly the perplexed look on his face as he read my CT scan report.
Somehow the tumors were retreating and it was hard to tell if it was a result of the chemotherapy that ceased a year ago now. In my view, the stalemate was broken and I was finally turning the tide on this chronic disease. The plan to continue doing nothing treatment-wise and continue living my life normally was working!
Unsurprisingly, after this revelation, I did what I do best and packed my bags. My wife and I decided to return to New York to spend another 6 weeks visiting friends and family and also stopover in Istanbul, Turkey – a city and country I have yet to explore.
This trip was tumultuous on a couple of fronts. The economic crisis in Sri Lanka was beginning to unfold, the Ukraine-Russia war had just been ignited, and I also decided to quit my full-time job. While in the USA, the plan was to take some time off to recover from burnout following months of stress and get reenergized while staying on top of both the war in Ukraine and the unraveling of the Sri Lankan Economy.
Our 6-week stint in New York was soon over and we found ourselves back in Sri Lanka. Our home was definitely much worse than when we left it. The fuel queues were starting to become an everyday fixture along with daily power cuts and acute shortages of food.
I wasn’t very keen being on a sinking ship so we packed our bags yet again and decided to spend 6 weeks in the Philippines to spend time with my family who I last saw a year ago during my mother’s funeral.
Compared to what was happening back home in Colombo, Sri Lanka, being in Manila, Philippines was a relative dream. We had access to everything we wanted and more. During our visit, we decided to stay at the newest Financial District of Bonafacio Global City (BGC) in Taguig (a district of Metro Manila). This highly urbanized part of Manila was brand spanking new compared to the neighboring districts in the metro area. It glittered with lines of glass skyscrapers that adorned its skyline and the city buzzed with the energy of similar urbanized neighboring cities like Singapore and Kuala Lumpur.
While I reveled in being in Manila and away from the crisis that was worsening back home in Sri Lanka. I was beginning to feel some discomfort in my stomach and even experience some mild back pain. Before I left for the Philippines, I did a CA 19-9 (cancer antigen 19-9) test, a test I do every 6 weeks or so, and the result spiked when compared to the previous 2-3 tests before it. I spoke with my Oncologist and he advised that I retake the test when I return from the Philippines in case there was some kind of lab error or other inflammation and we would go from there.
While in the Philippines, my General Practitioner treated the stomach discomfort as gastritis and the pain fluctuated in terms of its impact but was never really severe. I began to live with it and carried on normally every day and enjoy as many days in the hot, sticky sunshine of Manila.
Our time was up and we made our way back to our home in Colombo (a few weeks ago now).
Truth be told, I was always concerned that my cancer had decided to flare up again but I was holding on to the thought of the gastritis being the culprit of my recent mild stomach woes.
As soon as we got back, I got some blood work done and did my bi-annual CT scan. The ensuing days of waiting for the results to emerge were nerve-racking but I was confident that it would not be too bad.
We got word and the results were ready. My wife and I headed to the hospital to collect the report personally. My scans were handed to me and I rushed to read the report contained within in. I skipped all the medical jargon to the last part of the report where the conclusions were published and my heart sank.
The cancer had broken the truce we had and had started to come back with a vengeance. Not only did the tumor double in size since February 2022, it had also spread to my liver.
This was a real kick in the balls and it did explain why I was feeling the way I was feeling for the last month or so.
We immediately contacted my Oncologist from the parking lot of the hospital and he deduced that the cancer has mutated and become more aggressive. He called for immediate chemotherapy which I will begin a new round of this weekend.
I spent the last few days following the news trying to wrap my head around all of this and also get all the pre-chemo tests necessary to be certified fit for chemotherapy. The good news is that I’ve been cleared to start chemotherapy so here is the current treatment plan:
- Begin a chemotherapy regimen that is shorter than my first regimen of FOLFIRINOX. The schedule will be a 3-4 hour infusion once a week for three weeks with a two-week break following that. Repeat this schedule two more times for a total of 9 infusions in a 13-week period.
- The significant growth of the tumor has begun compressing my bowels (leading to my stomach discomfort) so there is a growing risk of a blockage of the biliary duct (a tube that carries bile from the liver and gallbladder). Let’s just say that a blockage is bad news bears but as of right now, this blockage hasn’t occurred – which is good. In the event that it does during the course of the chemotherapy, a stent may be inserted to ensure that bile continues to flow normally.
If you have made it this far, thank you so much!
It’s been a real rollercoaster of a week and while I’m not looking forward to going back to chemotherapy, it is something I will need to do to have a fighting chance of managing this illness. I’m disappointed, angry, anxious, determined, sad, and grateful all at the same time.
My body has been resilient so far and I want to ensure that it gets everything it needs to mount a mighty resistance.
I just had a big exhale because this is something I’ve been wanting to get off my chest and the cathartic release of writing is something I want to lean more into as I go through my treatments.
Keep your fingers crossed for me and stay tuned.
All my love,
Nico
