Marching Onwards

"It doesn't matter what you say about somebody once they're gone. What matters is how you treat them when they're still here." 

- David Silver, Beverly Hills 90210

On this day in March 2024 I came home from a month-long hospital stay where I had been treated for newly-diagnosed metastatic breast cancer. That month was also the twelve-year anniversary of my original cancer diagnosis. 

Two weeks later, following a failed attempt at targeted therapy, I was discharged from oncology care and told "I'm sorry but there is nothing more we can do". I was signed over to a team of palliative care doctors and given weeks to two months to live. 

That was two years ago. 

I'm sure you, dearest of readers, have guessed the moral of the story: Don't believe everything you are told when it comes to your health. Take it at face value and appreciate that it was based on the best available information at the time. But remember that you are in the driver's seat. Sure, some things are certain and cannot be changed. I accept that. But know that a lot of things can be influenced and even directed by your persona and your approach to life. Did I believe I was dying? Yes of course; I was told I had Stage IV cancer, and that couldn't simply be wished away. Did I believe that my death was imminent? Absolutely not. I was still alive and living my life. I wasn't fading away and dying. I would know if I was. 

And so it happened that I lived one more day, and then the next. Days turned into weeks, which then turned into a couple of months, and suddenly I had outlived my projected expiry date! I kept going because there was nothing stopping me from doing so. I had a natural and strong will to continue living my life, and so my life continued living. Then low and behold, not surprisingly, I found myself approaching the two-year mark and was asked by my eldest daughter how to describe how this made me feel. Was I happy to still be alive, or was I tired of fighting for my life? Was I sad, frustrated or relieved that my timeline had been stretched out over so many months? 

My instinctual reply was that I of course was happy to still be here, especially to be here to mother my children. But I didn't quite know how to genuinely answer her question. So I told her that I would think on it, and I promised to write a blog post by the end of the month in which I would share my answer to this integral question. 

So here I am today, in true last-minute Ellen form, with my response:

I am thrilled to be alive. But I am not one bit surprised or even overjoyed as it feels like any other day. With one exception. I am completely and utterly exhausted. Not from "battling" or overcoming the big C. Not even for being "strong" or "a warrior". Despite being labelled and then celebrated for holding these titles, I feel like an imposter as they evoke attributes that I honestly and wholeheartedly do not possess. 

I am no stronger than any one of you. Each of you, if push came to shove, would stand tall and carry on with your life in the face of adversity. It's human nature to survive. It's instinctual and methodical and doesn't even get a second thought. We just do it. So giving me a title of something that just happened of its own accord is actually embarrassing! I had to of course politely thank you all and feign a smile to appease your kind, compassionate and complementary nature, but I was one hundred percent a fake. I was simply living my best life with the circumstances I was given, and this came across as something heroic in nature. I can assure you there is nothing heroic about me. 

I am just being me. 

It's uncanny how perceptions change when you are thrown into the category of "the dying". You are somehow, for some bizarre reason given the status of rockstar superhero, doer of no wrongs and angelic by nature of simply existing. It felt surreal and unnatural to be placed so highly on this pedestal, as it came with a whole host of expectations. Every achievement, no matter how basic and mundane, was celebrated enthusiastically if not exaggeratedly. 

And. It. Was. Exhausting. 

I found myself longing for the end of each day to come a little sooner so I could relax back into my authentic, boring self, reset my brain and be still with my thoughts. I wondered how long I could continue to appease the masses who cheered me on from the sidelines every step of the way. I even began to shed doubt on my own actual strength and question if I would have the stamina to keep up this facade. 

So when this month began and I was asked how I felt about being here, about being alive two years on, I could only come to one conclusion. I felt thankful to be here, but I felt utterly drained. Not from the disease, the treatments or my plethora of symptoms. 

No, there was more.

When diagnosed with Stage III, there was a clear path to recovery. Chemo, surgery, radiation and endocrine therapy. The first three wrapped up within a year, while step four was a pill to be taken daily for ten years. I dutifully and appreciatively accepted and endured these treatments with the promise of a potential payoff that came at the end: twelve years of recurrence-free living. Life in the new normal bounced back, albeit shakily and not without its challenges. Then came the metastatic diagnosis which changed everything.

There were no guarantees, in fact the only certainties were that each day would be a gift, one that was not to be taken for granted. Given my initial rapid deterioration, the expectation was that my days were now numbered and I prepared for the worst while hoping for the best. Then as I have already described, I remarkably and spontaneously survived. I began to question whether it was my health that had changed or if the disease had somehow shifted course. None of that was really important, I was just happy to be here. At least at first. 

Don't get me wrong, I would not change a thing - but the shift from "one more day" to "endless days" was a big one that meant learning to adapt to my new confines (drainage tube care, endless palliative medications, regular scans, tube maintenance procedures, and the emotional shift from a time-limited gig to a long-standing roadshow). In crept fatigue and eventual burnout, and all the fun things they bring to the table. It's hard to keep calm and carry on when you don't know what you're dealing with or how long you will have to keep up your game. Energy stores are easily depleted during regular activities like getting dressed, eating breakfast or even walking to the bathroom, and whatever little stores remain get immediately consumed if an activity is on the daily agenda. By activity I mean anything from an appointment to a home nurse visit to a fun outing. All of these require at least a basic level of energy, and when you are starting with next to none you have to be strategic as to where you expend it or you risk stranding yourself in a truly uncomfortable situation. I can't count the number of times I have had to cancel scans or plans as I simply couldn't get dressed in time or walk the required distance. 

The number one sentiment that overshadows all others then, appears to be something I cannot really label as it encompasses all of these feelings of fatigue, distress and burnout that come with prolonged survivorship. In the absence of clear terminology I'll describe my feelings in prose instead:

I am the crepe that was meant to be a pancake.

The tire that was over-inflated then burst.

The river that surged then dried up. 

The burst balloon that once took flight.

The sun that was eclipsed...

But hope, dear friends and family, was on the horizon, and there would soon be a return of the light.

I felt it growing inside of me daily. I FEEL it there in the depths of my cancer-ridden belly. It lingers, uncomfortably at times, and then it begins to glow. Sometimes I fear it is the disease progressing but then my bi-monthly scans come back stable and I breathe a sigh of relief. It is not the cancer taking hold of me. It does not have me in its grip as it did in March 2024. Instead it is my Will, my inner spirit, my very essence and existence that I feel in the depths of my abdomen. And it feels great. It grows a little stronger with each successful treatment cycle. It knows me as it is me. 

This is what I hold onto. Call it hope, call it fortitude, call it whatever you feel it deserves. I am just going to call it my will for a long life, and continue to live my truest life by loving those most dearest to me, and all whom I've encountered along the way. 

That is how I feel today, Soraia. I feel this immense love for life and I just want to shine with it for all to see. I hope I can do it justice and that it lingers long after my passing, whenever that may be. But remember. What's important is not what we leave behind. It's what we do with the time we are given, when we are here. Which brings me back to that inspiring quote I opened with.

Show up for others every day. Don't wait. Your words and your actions, no matter how brief or small, make a difference in this world. Especially when you give life to your best, authentic self. That's how I plan on living the next two years, and then some more. Because why stop at four when you can have fourteen, or even forty? That would place me at 93. Your Grandpa is 92 and we are like two peas in a curry-infused pod. I call that a recipe for longevity, and you should too. 

With love, light and intention,

Forever yours, 

Mom