ˈ/outˌlīər/ — noun
“In statistics an outlier is a piece of data that is far from the rest; think of a graph with dots, where most dots are clustered together in the middle, but one dot, the outlier, is at the top. Think of an outlier as an outsider. An outlier refers to anything that strays from, or isn’t part of, the norm.”
a person or thing situated away or detached from the main body or system.
a person or thing differing from all other members of a particular group or set.
Around the fourth month, after my initial diagnosis, I had a meeting with my Oncologist. You always have meetings with your doctors when you are in this boat, and the doctors can pile up quickly for so many reasons. These meetings are preceded by all sorts of tests which vary based on your situation, condition, what they are looking for/at this time, etc. etc. These meetings are also followed by additional tests and, hopefully never or rarely, some type of procedure. The cycle repeats itself almost every 2-3 months for me, at different stages, so it is essentially all the time and ongoing – a full time job. This includes lots of paperwork. None of us ever manage to get rid of the fucking paperwork! I bet you have a whole stack of it (or more!) somewhere just sitting there staring you in the face every time you pass by. It’s not true that you only have to pay your taxes and die, you have to do all this damn paperwork along the way too!
In my case the regiment includes (but is not limited to), for my eyes, an OCT, Eyeball Ultrasound, Field Vision Test and Eyeball Pictures followed by meetings with a Neuro-ophthalmologist and an Eye Tumor Specialist. They all must shine bright lights into your eyes after dilating them. It’s the first thing they do, pretty much always. Along with a solid loaf of Christmas cake infused with candied fruit, I despise this. I have light sensitive eyes and it’s always bugged me, since childhood. “Just saying”.
For the head/brain it is an MRI checking the existing tumors in the left hemisphere and the larger one in the nerve on the right side and looking for changes, new ones etc.. This is followed by a meeting with a Neurosurgeon.
For the primary cancer and metastasized areas from the neck down to the pelvis, it is a body CT, Chest Xray, EKG and comprehensive Blood Test. It is with these, along with all the previous things, results and reports, that I sit in a meeting with said Oncologist whom I started to mention before slightly digressing.
Tests at the time showed that the pleural effusion was stable (that’s the liquid accumulating in the lung cavity) and had not returned much since initial and secondary draining. The other very good thing was that the cancer and metastatic tumors were mostly stable and not moving. “That is highly illogical”. Looking back on it, magical, as it is now.
As we were preparing to start chemotherapy, my doctor shared with me his thoughts to hold off on it. Given the status, he preferred and suggested not to begin at that time and wait to see how things develop. When you have stage 4 cancer, this is an option. I understand that they would pretty much never do this with any other diagnosis and not all doctors would consider doing it anyway. My doctor asked me out of interest what had I been doing since November as this is an uncommon situation.
I didn’t know quite how to answer him and started with all the logistics of being a patient, however, as we started to discuss it, I told him about my choices: I told him about a diet I had started using (he doesn’t believe in diets, per se, but highly encourages eating tasty food!), that I tried to exercise almost daily with swimming / walking (at least thinking about it and often doing it), that I continued with some routine as best as I could, the vitamins that I was taking, that I went to therapists, that I hoped for the best, that I started using cannabis – at which point he stopped me and corrected me with a wry smile and his finger waving, “… ahh, ahh, ahh … you continue to use cannabis …”.
We had a good laugh, yes doctor you are correct, I am guilty as charged! It is one of the better medical tools in my kit as it is for many people out there. Humor along with a positive attitude even when you feel like shit goes a long way and is something I add to this list of things I choose to do. I laughed at myself as much as possible, the surrealness of the situation, and I still do. I have to. For an instant, my heart and soul explode every time I see paperwork with ‘NSCLC-4’ written or scribbled on it.
A year later, the situation is different and the cancer has certainly progressed, albeit slowly, as it is in my head and eyes too, yet controlled. We had started to look at chemotherapy and I find myself once again going off in a different direction, using some newer targeted therapy. Rarely do things go as planned. Plans are put in place so we can change direction and react quickly as things go awry, only to make updated plans.
The truth is, we don’t know why it stopped or why it’s behaving as it does, and we will probably never know. It is a combination of everything. Even with the changes, my doctor told me that I’m not on the charts, in a good way. I plan to stay the course, always, in some way.
Apart from luck, I’d like to believe that this is because of the things I choose to do, when I can, and over which I feel that I have control. With a positive attitude as often as possible, to focus on that which I feel good about and with which I feel better. This includes not being too pigheaded and open minded enough to change and adapt. It has become my life’s focus and I find that if I listen to, trust and follow my instincts, things are better.
We are always part of some statistic, whether we like it or not, so to me it’s preferable to choose statistic(s) you want to be part of, and which not. Mine is to survive with meaning and purpose as long as possible, despite the odds. I’d like to also spread some hope, love and inspiration along the way.
For me, it’s health, happiness and wealth, in that order.
I understand that something is not normal, and in this case it is a GOOD thing. We don’t always want to be normal and yes, there are things for which we DON’T want to be outliers. However, in my case, looking back on that day, more than ever now I spend my time trying to not be normal and on being an outlier. My life depends on it.
Easier said than done, I know… However, ask yourself, what does it mean to be an outlier? To go out of my way to push myself beyond the normal statistic in anything I do? Sometimes it’s as simple as just a smile or a thank you. Most other times it’s a bit more complicated and beyond, but doable. I worked in corporate, as a father, as a husband, as a citizen on this planet. In my own startup. For all of us, it starts over every day when we open our eyes. Right there you are an outlier! We are actually all outliers inhabiting a planet speeding through a solar system, speeding though a galaxy, speeding through a universe, speeding through things we are only beginning to discover and understand. Magical.
Without a doubt, I am lucky, and along with the tremendous support and love from friends and family around the world, I strive daily to be an outlier in everything I choose to do. We all can.
“The future’s uncertain, and the end is always near…”
peace, love and happiness –sms–