This post was originally published on my personal blog at chrischelli.com on October 10, 2023 — exactly one week before my surgery. What follows is exactly what I wrote that day. I resisted the urge to update it with what I know now because I felt it was important to preserve the mindset of someone standing on the edge of completely unknown territory.
Navigating life is nothing more than making constant adjustments to an ever-changing landscape. Like most people, I’ve dealt with my fair share of change. In 3rd grade, my family moved across town, and I had to switch elementary schools in the middle of the year. But that one was easy for me. I moved to a neighborhood (and school) where I already had a friend. Plus, there were several kids my age on the same street. There was nothing difficult about that move. If anything, it was the best thing that could have happened to me at the time.
The next big adjustment was going away to college. My experience there was similar to any 18 and 19-year-old that moved from a home with their parents into a dormitory. The lessons of self-discipline and accountability were there for me to learn, even if I did my best to avoid them.
Less than a year later, another big shift had my life move from Massachusetts to Texas. New state, new school, new everything. The move was with my parents. I was back to living with them as we took in our new surroundings and pushed forward.
Another year later, it was back to dorm life at the University of Houston. Third school in three years (fourth in four if you include the senior year of high school). New city, new people. More adjusting. Things were coming into focus. I had declared a major and classes were fun and easy for me.
Over the course of the next two years, I worked a variety of jobs while attending classes full time. I was in the Hotel/Restaurant Management program at U of H and the jobs fell in line with that. I was doing everything I could to learn and grow. Even if it meant biting off more than I could chew.
Somewhere along the way, I hit a rough patch. I became overwhelmed. I was doing too much. I hit the reset button and moved back to my parents’ house. Another adjustment. It was time to slow down and assess. Six months later, refreshed, I was back in Houston with a renewed resolve and more determination than ever.
Around two years later came the biggest adjustment to date. I met the girl that would become my wife. Going from the single life, to sharing everything with another person is the ultimate adjustment. It takes a lot of strength, determination, and patience. I guess we were up to the task because that was over twenty years ago.
The past two decades have involved a few moves, some job changes, a global pandemic, and several other circumstances that required shifts to routines, attitudes, and life in general. It is all part of the process.
So, what’s the point of this? Everyone faces situations that require adjustments. Everyone deals with those circumstances in their own way. Some people have the ability to quickly pivot and adjust while others crumble under the stress of changes that they have no control over. I’ve seen people that truly struggle with that. They like things a certain way. They create an expectation in their mind and don’t handle it well when things don’t play out exactly as they were envisioned. Maybe it’s because of my history, but I’ve never been one of those people. I feel like I’ve always been good at dealing with change. It’s a “bring it on, we’ve been here before” mentality.
As recently as a year ago, I had never thought of all of those shifts that I’d taken in stride as important life lessons, but here we are.
Since the cancer diagnosis (eight months ago today), I’ve been credited for my attitude and strength. But I think there is another, unexpected element at play here.
To set this up, I must go back to the doctor that delivered the diagnosis in February. He said, “I can’t promise you’ll be here in a year.” That hit me at the time, but not the way you would think. It should have hit like a wrecking ball, but it was more like a quick jab to the face. It stung but didn’t knock me down. They were just words to me.
In hindsight, there was a reason he delivered the message that way. It’s the same reason a doctor from MD Anderson gave us a poor prognosis back in April. The type of cancer they found was nasty, aggressive and did not provide a great outlook. But just like every other major, life-changing situation I had faced in the past, I simply said, “Okay, what’s next?”
The gravity of the situation never hit me because it never does. And if you know me well, this probably won’t surprise you. I can be as naïve as they come. And I think that has been my saving grace.
To be completely honest, I don’t know if naïve is the right word. A Google search of a definition reads: “lack of experience, wisdom or judgment.” I don’t know if that applies. I have plenty of experience, I’m not dumb by any means and… while questionable at times, my judgment is not always lacking.
But how else do you describe it when you don’t let the seriousness of a situation get to you? What is the word for continuing to push forward amidst changing circumstances. Robotic? Methodical? Neither of those really fit either as I can be very emotional at times and both of those words suggest a lack of emotion. Maybe resilience and or resolve. I don’t know. And I don’t spend that much time thinking about it. It just is what it is.
All along the mantra has been about fighting cancer, battling a silent but deadly disease. But what has this fighting entailed? In the very first blog I wrote, I speculated on what it would be like if you could train and prepare for a cancer diagnosis. It was all stuff that had already happened. I was just lucky enough to have followed a path that made this fight easier for me.
What do I mean by easy? Twelve rounds of chemotherapy barely affected me because I am and always have been physically strong. The diagnosis of a deadly disease deflected off me either because I am mentally tough, or too oblivious to fully realize that it’s not supposed to be easy. Still not sure which. Maybe it’s a combination.
What I’m trying to get across is that none of this has felt like a fight. I don’t feel I’ve done anything special or extraordinary. It has been a series of days, strung together, doing the things that my doctors and personal research say I should be doing. At some point I will document all of the things I did and changed since the diagnosis, but to me, they don’t feel like much. Just a few adjustments to supplements and routines.
Of course, there are a lot of things that are different. For one, I have had tubes tapped into my kidneys to drain urine to external bags since February. Well, technically only the left one actually drains. I don’t keep a bag on the right side because it never produced much of anything. My hands and feet have a permanent numbness (neuropathy) from one of the chemo drugs. I have trouble focusing and get scatterbrained, but that’s been going on much longer than the past year, although it’s possible that chemotherapy has enhanced that.
But for some reason, we have had great results. I wrote how there was a PET scan on May 8th that showed, in the words of our oncologist, “A complete response by imaging.” Tumor marker blood tests have shown no signs of any circulating tumor DNA in my blood. A more recent PET scan showed essentially the same results. This leads us to next crucial steps.
Back in May, with the good PET scan came something I wasn’t quite ready for. The discussions turned to surgery. Removal of my bladder and prostate would be my “best chance at a cure.” As I write this on October 10, 2023, we are one week away from that happening. This has been looming for five months now. And like many other things, the gravity of it is just not hitting me.
With bladder removal comes the question of how you get rid of the urine from your body. I was given three options. I’ll do my best to keep these as simple as possible. If you wish to know more, I will make parts clickable with links. The first option presented was a neo bladder. In this situation, a new bladder would be constructed from intestinal tissue and would be connected to the urethra. Urine would go out the “normal way” although with different mechanics and sensations. This option was quickly eliminated in my case due to large tumors being at the neck of my bladder very close to the opening of the urethra. The concern would be that the likelihood of recurrence was greater due to those conditions.
Option two is called an Indiana Pouch. Again, this is an internal collection system, meaning that I would look normal on the outside. The difference here would be that to evacuate the urine, I would need to place a catheter in my belly button. Every time. With a new, sanitized catheter.
Option three is urostomy surgery. In this case, as urine leaves the kidneys, it will flow to a stoma on my stomach and empty into an external bag. The bag will be stuck to me with adhesive and need to be changed out every five days or so. I will have this external bag attached to me for the rest of my life.
At first, I had been leaning toward the internal Indiana pouch. In fact, according to the notes for the surgery, that is the option that I’m going with. But it occurred to me that the reasons to go that direction are mostly aesthetic. While I’ve never been one to completely disregard my appearance, it has also not been a priority for the majority of my adulthood. If I’ve kept my hair at ¼ of an inch or shorter for the last two decades out of convenience, why would it be important to me to look good in my late 40’s and beyond with my shirt off? Also, I don’t know about you, but I don’t often make it through the night sleeping without having to get up at least once to go to the restroom. The idea of trying to stick a tube in my belly button while fully awake is problematic enough, never mind performing that function while being half asleep. Additionally, while it’s been quite some time that I drank too much wine and found myself inebriated, as one doctor put it, if that were to happen with the Indiana pouch, I’d need a lot more than a designated driver.
So, in all likelihood, it will be the external pouch. The surgeon has told me I can make my decision as late as the morning of the procedure. From what I understand, it’s also an easier surgery and recovery. Plus, I’ve been trained to empty a bag (from the kidney tubes) for about eight months now. So, it won’t be a huge transition. I will be able to get into water (which I have not been able to do with the current tubes), so that will be nice as I have missed swimming, floating and the occasional hot bath.
At the end of the day, it is just one more adjustment. A permanent, life altering adjustment. But hey, it’s not the first and likely won’t be the last. So like everything else, it will be taken in stride, integrated into the new normal and become just another one of those things that happened to me. And I won’t spend a whole lot of time thinking about it.
0 Comments