I finished my lung, throat, and whole brain radiation (WBR) treatments about a month ago. By now, I expected to be writing a blog post demystifying WBR, but – suffice it to say – nothing about my experience has been ‘normal’, and I don’t want to unjustly dissuade anyone from undergoing this treatment, when needed.
As many of you already know, I have also joined a new trial for the drug (Repotrectinib, TPX-0005) at Memorial Sloan Kettering in NYC. Much like the other two oral agents I have taken (Crizotinib & Lorlatinib), this one was also developed by Jean Cui (formerly associated with Pfizer), who now has her own pharmaceutical company called TP Therapeutics.
I’m in a special cohort of the study called the Midazolam arm, where they study the effects of both drugs (Midazolam and Repotrectinib) on your liver. Without this new cohort, I would be ineligible for the trial because I have undergone more than the allowable number of treatments. Thank you, Universe.
Unfortunately, two weeks after my WBR treatments concluded, and on the same day as I took my very first dose of TPX, my oxygen saturation levels plummeted — a scene with which I am all too familiar.
With this news, I was taken to the in-patient unit at MSK. Excuse my tangent, but it was a very odd ambulance transfer. It appeared as if the paramedics may have found the keys to the ambulance in their frat house and locked the real drivers in a closet. They were more interested in checking out and commenting on the appearance of women — like the daughter of the attending physician — than ensuring I was ok. Fortunately, that is the single complaint I have so far. And, I believe the ambulatory services are overseen by the city rather than the hospital, so no blame falls on the amazing MSK.
Back to the O2 levels. They were low, so after my Halloween-like ambulance ride, I was checked-in to the inpatient unit. Following a chest CT, we learned that I have pneumonia in both lungs. Fun (alveoli) bags! I was formally admitted and spent four nights in the (dis)comfort of a hospital room, as they pushed antibiotics through my veins, and deprived us (me +/– my dad, jess, or nick) of sleep with early wake-ups to check for vitals and aggressive, noisy, pull backs of the ‘privacy’ curtains.
Sadly, I didn’t get any relief from the antibiotics, which worries me that the cause may not be infectious. But I didn’t get any worse, so I was discharged with home oxygen on Monday.
Oxygen. Ooooh that familiar asshole. Damn I hate carrying around oxygen and constantly checking to see if the canisters they guarantee will last a certain amount of time have already run out, as they always do. But I mostly hate home oxygen because there is nothing more demoralizing than being chained to a machine your body relies on to breath, and thus, to live. If there were levels to the feeling of being ensnared, relying on home oxygen ranks second only to having cancer itself.
Four days later, I had my next outpatient check-up, coinciding with day seven of taking my study drug. The consensus is still that I have pneumonia. So, now I am taking some steroids (Prednisone) and hoping for a Hail Mary.
I feel defeated, exhausted, and emotionally worn. I’m wavering between crying because I don’t want to die and crying because I do. I’ve had similar moments before, but something feels different this time around, and I don’t like it one bit. It’s a mixture of fear of the unknown, trust in the process, and awareness that I am traveling down a rollercoaster, and at some point (soon) the tracks will go left or right.