After speaking to my Oncologist, I have decided to not move forward with any treatment options and will now focus on palliative care.
This is something I needed to think about long and hard but ultimately, this is what is best for me moving forward. Naturally, this begs the question: how much time do I have left? I discussed this with my Oncologist as we went through all the possible scenarios.
In the first couple of scenarios, he did present some chemotherapy options that largely centered around the FOLFIRINOX regime that I did in 2020 during my first round of chemotherapy. As a reminder, this chemotherapy schedule is a very toxic one that involves a cocktail of drugs that would be infused over a 48-hour period. After doing six rounds of this arduous chemotherapy, I knew that I did not want to go through it again which is why I was devastated when I found out that my bilirubin levels were too high thus making a shorter, less toxic chemotherapy impossible. Alternatively, he also presented an abridged FOLFIRINOX schedule which could be infused over an 8-hour period but even that didn’t sound very appealing at all.
Truth be told, in the weeks that followed after I first learned that my cancer roared with a vengeance after being relatively dormant, the possibility of my time being up always burned bright in my mind. At this point, it had been almost 2 years since I was first diagnosed and during this time, I lived the life of someone who didn’t have a terminal disease. A lot of my friends, and even passerbys, were shocked to discover that I had stage four cancer. “You have cancer? No way?!” many exclaimed. On the one hand, this gave me a license to truly live every day like it was my last, but on the other, it gave me a sense of hope, hope that I was going to live a long life. This hope put me on a path of thinking far in the future, maybe too far considering the cancer was still in me silently toiling away.
Fast forward to the appointment I had with my Oncologist, I went into this meeting with truly only one question for him: “Doctor, how long do I have to live?”. He was a man that didn’t mince words, he was a true straight shooter. This is why I really enjoyed working with him. “Hard to predict actually. 6 months? Maybe more or less depending on how the disease progresses” he replied.
All the cards were now on the table. With the biliary stent procedure not going as planned, I knew my options were few and far between. If the stent procedure went well, I would’ve been more confident about going through a tougher chemotherapy but the fact that it didn’t meant that not moving forward with any treatment was likely going to be my next step. Before walking out of my Oncologist’s office, I shook his hand and thanked him for looking after me for almost two years and then felt a massive sense of clarity about my mortality since all of this started to unfold.
I’ve spent the last few weeks doing two things: beginning my palliative care program and also having conversations with my immediate family and closest friends about my decision. Let me address the latter first.
For the most part, much of my family was supportive of my decision despite it being a bitter pill to swallow. One family member posed the question: “but isn’t this giving up?” – a completely fair point but to me, it was about quality of time versus the quantity of time. Sure, I can get back to the tough chemotherapy infusions but it would mean that I would be a shell of myself whilst I dive in and out of hospitals the whole time. In fact, I debated this with my Oncologist and even he divulged that doing chemotherapy now would only mean extending my life for a little longer and not any significant length of time. This didn’t inspire confidence at all and hearing it from him shut the door on chemotherapy entirely in my head. I was definitely going to be much more content in spending the time I had left with my loved ones before I faded into the sunset. In fact, this past week, my brother and father visited me from the Philippines and it was wonderful spending some time with them. If you scroll up to the top of this post, you’ll see a family photo of the three of us. 😊
Now, let me move on to how my palliative care is going so far. After consulting with a pain specialist and getting prescribed a cocktail of medications that included several painkillers, it was off to a rough start. For the first few days, I had to deal with a multitude of alternating side effects which ranged from brain fog, drowsiness, nausea, constipation, and even diarrhea. It was horrible and I was largely bedridden for the first week or so. The medication that was supposed to provide me comfort was making me sicker. What kind of bull**** was this?
We consulted with my team of doctors and they did say that this is expected because pain medication can have different effects on people and will need to be adjusted until the right cocktail is discovered. After about a week of experimenting with different medications and dosages, we finally got to a regime that worked and I haven’t had the dreaded brain fog (the worst side effect by far) in a few weeks now. Nevertheless, I’m not completely out of the woods and my symptoms vary from day to day despite the new cocktail of medication. There are some days when I am largely pain-free and able to function normally while other days are taken away from me with stomach pains and nausea. The medication does help relieve the pain but it can still linger on those days, enough to keep me in bed for most of the day. Fortunately, I still have my full range of motion and can do basic things like shower and binge-watch YouTube videos for the most part. Hoorah!
I feel like I’m rambling so I want to dedicate the last part of this post to my beautiful wife.
A few weeks ago on August 1, we celebrated our 3-year anniversary. We received our marriage license on August 1, 2019, and had the wedding of our dreams a few months later just before the world shut down thanks to COVID-19.
I can’t even imagine what she is going through. We have talked about all of this at length and while she is very supportive of my decision, the very thought that it is just a matter of time before the curtains close on my life can’t be a straightforward thing to face day in and day out. We have a long history together. We first met in middle school at age 11 and continued a friendship that blossomed into the greatest love story ever told in the 20+ years that followed. To my darling, I’m so grateful for you. More than I could ever express in words. We’ve always found a way back to each other and I promise that we will find ourselves together again. Our love story will live on for eons to come.
In closing, I want to thank everyone for all the overwhelming love, thoughts, prayers, and support. Please bear with us if we aren’t able to respond to your messages and calls in a timely manner as we navigate the windy roads of my palliative care but we certainly appreciate you reaching out to us.
Hopefully, catch me on my way out of the door?
All my love,
Nico
