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The Worst Kind of Surprise

Not long before the coronavirus pandemic hit, I received the worst kind of surprise: a stage IV lung cancer diagnosis. I was shocked. Scared. Confused.  It couldn’t be about decisions I had made, could it? I was a healthy person, I thought. I exercised. Never smoked. Drank only in moderation.  I ate lots of fruits and vegetables. And I was only 45 years old. Cancer didn’t care.

After I hung up with my general practitioner – Dr. Katherine Keil of Northwell Health, who had pursued every avenue to figure out what was happening to me and would stay dependably close with us as we navigated what would come next – I sent a text to Janis, my wife:  “Please call me.”  She wrote back: “Can’t right now. Is that ok?” Then me again:  “I’ve got bad news.” She came right home. We held each other and cried together. We decided to go for a walk – and then ended up sharing a burger but leaving most of it on the plate.  

Sitting at the nearly empty burger bar, with hopelessly upbeat pop music playing in the background, we tried to gather our thoughts. We would need an oncologist. That was clear. We would need to decide how we would talk about this with our little boys, who were five and nine. We would need to figure out who else to tell and how. We had no idea the twists and turns that awaited us in what would amount to a massive, emotionally fraught project management effort – but it was time to get started.  

We ended up opting for a poem to share the news with extended family and friends and to kick off a fundraising campaign to raise money for the Lung Cancer Research Foundation (LCRF), whose mission is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment and cure of lung cancer:  

Roses are red… wait, that’s a begonia
We thought we were dealing with plain old pneumonia
But antibiotics did nothing, so then
We found ourselves back with the doctor again
What it could be?  Do you want the answer?
Michael has stage IV non-small cell lung cancer.

In the weeks between my diagnosis and the onset of the pandemic, we chose an oncologist – Dr. Abraham Chachoua of NYU’s Perlmutter Cancer Center – who ordered a biopsy that he used to lock down the specifics of the diagnosis.  For my initial treatment, we chose a therapy called Alectinib that targets a genetic mutation in my cancer called ALK+.  And I needed to begin right away because the cancer had spread extensively through my body:  the first full CT scan showed my insides leopard-like with all the lit-up tumors.

I then experienced the whiplash of learning that the therapy was working – and then finding out that I had to stop taking it because it was damaging my liver.  We contemplated switching to another drug, but decided we should give this first one another shot.  A few weeks later, we had worked our way little-by-little back up to the full dose from zero.  

We hardly had had time to celebrate when my next set of scans revealed a new tumor that had grown from nothing in the presence of the ramping Alectinib.  It was a sign that my cancer had developed resistance to the drug.  We knew from the start that eventual resistance – dreaded resistance – was close to an inevitability, but we weren’t expecting it so soon.  Cancer had a different plan.

The next step was to have an interventional radiologist destroy the new tumor with extreme heat.  This procedure took place the day that the World Health Organization declared the outbreak of a global public health emergency associated with the novel coronavirus.  Initially, the procedure was to happen a number of weeks later.  Janis and I insisted that they find a way to squeeze us in.  

We were doubly relieved to have gotten it scheduled when we did.  First, we learned that the tumor had quadrupled in size between the scan that revealed its existence and the procedure that destroyed it.  If it had grown any larger, the procedure would no longer have been possible.  Second, the procedure fell into a category that would be paused during the pandemic.

This experience confirmed our belief that the timelines of disease progression and the timelines of treatment don’t necessarily match up and that it often falls to us – patients and our caregivers – to try to fix that.  This is challenging in normal times.  Overwhelming during a pandemic.

While we waited for the results of the biopsy of the tumor that had been destroyed, we scheduled the next scan to determine whether the new tumor was a one-off or the first in a new series.  Unfortunately, it turned out to be the latter.  This scan – right around the time of the first coronavirus deaths outside China – revealed another new tumor, this one alongside my kidney.  And it was creating a blockage.  I needed another procedure – this time to insert a stent and obtain a tissue sample.

The NYU endourologist also didn’t think he could schedule the procedure right away, but when Janis asked again firmly, recounting the quick-moving developments of the previous few weeks, he left the room and came back with a proposed appointment a few days out – because now “elective” procedures like this one were about to be turned off.  

He carried out the procedure while Janis waited nearby, masked and gloved – but was unable to collect the sample, because the tumor turned out not to be accessible surgically.  This was unwelcome news.

Knowing now that the resistance went beyond a single rogue tumor, it was time again to figure out how my treatment should evolve.  Unfortunately, we didn’t yet have the results from the liver tumor biopsy, which was now several weeks in the past.  Also, the coronavirus pandemic was growing worse.  I was already in a vulnerable category by virtue of having advanced lung cancer.  If I were to start infusion chemotherapy – which seemed like the right next step to my oncologist given the information at hand – I would become extremely immuno-compromised.  And I would have to take extra trips out into the world when I was supposed to be quarantining.  Not good.

At long last, the biopsy results came in – and they indicated that the new tumors had a different genetic mutation:  MET amplification.  There’s another drug – Crizotinib – that targets MET amplification much as Alectinib targets the ALK+ mutation.  An alternative to traditional chemotherapy was an Alectinib/Crizotinib cocktail.

I was on the cocktail for a stretch of time – and things were stable, until they weren’t again.  I had radiation therapy and then began undergoing chemotherapy while also sticking with the cocktail of targeted drugs, having started infusions just as the pandemic was peaking.  I dealt with the side effects you’d expect, along with heightened concern over the coronavirus with its new, more virulent strains – especially worrisome for someone as immune-compromised as me.  

This was several months ago.  The twists and turns have continued.  I don’t know what happens next.  

I do know that I’m extremely lucky to have a spectacular care team at NYU led by the inimitable Dr. Chachoua.  And to have other wise and accomplished oncologists like Jonathan Goldman of UCLA, Ibiayi Dagogo-Jack of MGH, Ross Camidge of the University of Colorado, and Kathryn Arbour of MSK to add their perspectives.  And to have a wife and children and parents and sisters and in-laws and friends and colleagues who are here in the fight with me… a fight which nevertheless feels as arduous as they come.  And a fight that anyone – of any gender, any age, any race, smoker or not – can end up facing.

The new screening guidelines recently announced by the U.S. Preventive Services Task Force focus on smokers, which is important.  That said, there is an entire community of younger non-smokers living with lung cancer, a community that I wasn’t even aware of before I suddenly became a member of it.  We must also continue to focus on lung cancer among non-smokers, through research like that funded by LCRF and similar organizations.  Why are we getting it?  How can we diagnose it earlier?  How do we treat it aggressively – and how, ultimately, do we cure it?

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