The elation I felt…

Trigger warning: This post deals with issues such as depression and mental/emotional breakdown.

The word “met” refers to metastatic cancer.

The elation I felt after these recent scans was overwhelming! When my oncologist said that we would move the scans to every 6 months, as opposed to the quarterly schedule we had maintained since my stem cell transplant, I cried. When I have broken down in front of him before, which I have done on numerous occasions, it was due to negative news or concerns he had. This time, however, the tears resulted from pure joy and happiness!

I was shocked when he told me this, completely speechless. When he entered his office, I braced myself. The 2nd to last scans performed in August revealed “nonspecific nodular change” on the largest pulmonary mets. Though things were “stable” then, it was still cause for worry.

This is the area where the recurrence was detected in early 2017, so naturally, it was worrisome.

I didn’t tell anyone. Not a soul. I said things were stable, but I didn’t mention the change.

We would “keep an eye on it”; that was the plan. We’d see how things looked in three months and how they appeared after the following scans. These were the parting words after my appointment in August – we’ll just wait and see.

Three months! For three months, I wondered what might be occurring within my lungs.

Those who talk about “being present”, living in the “now”, etc. are full of shit. When you’re told that there is a slight change in size in one of the mets on your lungs and that it might be growing, but we’re not sure, so let’s wait three months to be specific, you’d be leaping into the future and entertaining every possibility imaginable. Anyone would be anywhere BUT “here and now”; their minds would be bedeviled by worry and fear. Even Siddhārtha Gautama would be shitting himself.

Several months ago, an MRI revealed that there was potential growth in the met in my brain, the one that was treated with radiation therapy in 2016. It turned out that it was just swelling and that there wasn’t any growth. My mind kept reminding me of this incident and that perhaps the supposed growth in one of the lung nodules was also the result of swelling…

I was informed of this “nodular change” on September 16th, the day before I departed on what I had hoped would be a nice trip abroad for my birthday. The tickets had been purchased well in advance, and I was going regardless of the news I had just received.

I thought taking a short vacation would be nice. After hearing the news about the nodule change, I felt a sort of urgency to leave – in fact, I wanted to run away and be as far away from everything as possible.

While abroad, I began to “live it up”: lavish AirBnBs & private hotel rooms, extravagant meals at swanky restaurants, fancy new attire for my nights out, etc. My mentality, as morbid as it might sound, was, ‘fuck-it, if this is my last go-‘round, I’m sure as hell gonna enjoy myself!’

I prolonged my stay. I didn’t want to be home; I didn’t want time to sit and think about the possibilities and entertain the what-ifs that have plagued my thoughts since my initial diagnosis.

Naturally, all the fancy hotels and fine dining couldn’t keep the torrent of thoughts and worries at bay. They were creeping in. I was losing sleep, and, as a result, my already fragile psychological and emotional state began to further weaken. I didn’t recognize who I was becoming; I started lashing out at people, hurling accusations at friends, displacing the intense feelings of anger and sadness. I couldn’t bear the thought of a recurrence, of further treatment, and was spiraling out of control from the fear and stress I was experiencing. On top of that, amid this storm sweeping me away, I couldn’t find the words; nothing made sense, and I felt alone.

I just wanted to be held. This desire kept returning to me. This need and wish to be wrapped up and held securely was almost childlike. I didn’t want to dump the emotional weight of my situation onto anyone… I just wanted the comfort of prolonged embraces.

The stress and fear was too much. It ended with a hospitalization in Rodez, France. I experienced a nervous breakdown. After 5 weeks of traveling and doing my utmost to push away the anger, fear, and sadness that had sprouted from recent test results, I fell apart. Touching the scar from my craniotomy set into motion an avalanche of emotions, the likes of which I was entirely unprepared to manage.

My mother was the first person I told. I only spoke about it because the report from the most recent CT results mentioned the stability of all pulmonary nodules, including the one that presented with nonspecific changes 3 months prior. This would have been noted in the findings if it had been grown.

She didn’t understand why I didn’t tell anyone. “It’s too much stress for you, “she said, “you shouldn’t have been alone in this!”

I was alone with this knowledge and knew that a change had been detected in the August scans. I didn’t want to say anything because I didn’t know how. I am not good with communication; I have repeatedly repeated this. It isn’t that I’m not opening up, as some have told me; I just find spoken words strange and cumbersome. They don’t align themselves with my thoughts or emotions. Throughout my entire journey with cancer, I have felt at a loss for words. Even in writing updates and maintaining my blog, I have thought that the words I choose are so close to expressing what I need… but fall short every time. They lack the substance required for specific emotional experiences and psychological states. Before diagnosis, I could easily find the words needed to articulate my feelings and express myself. After being discharged from the hospital in Chicago, after being told I had cancer and that my life had been drastically altered, I immediately discovered that words no longer added up. Initially, I thought it was due to several things: stress, fear, seizures, seizure meds, and sleep deprivation. I considered these while packing my belongings and preparing for my return home for treatment. I was tossing clothes in bags and ditching possessions, all the while I was trying to understand why I couldn’t connect my thoughts and emotions with the words I so greatly desired. This ineptitude has continued and hasn’t diminished with time.  

The knowledge that everything is stable has brought an immense feeling of peace that has evaded me for far too long. The serenity that has arrived has lessened the pressure I have been putting on myself in many aspects of my life. I want nothing more than to find the words needed to feel a sort of connection with others. Perhaps one day, they’ll arrive when the dust from all this has finally settled. This is the area where I live in the “here and now,” where I am fully present. I’ll be with it daily, moment to moment, and I hope the words will eventually harmonize with my thoughts and emotions.