Clinical trials are always a bit of a crapshoot. On one hand, you have the opportunity to be treated with the most cutting-edge technology, medications, and treatments available. On the other hand, well, it’s a trial. There’s no truly solid data on its efficacy because you are the data. I felt fairly comfortable with my clinical trial decision in December. The drug I would be taking was an oral version of a drug with very trusted efficacy, and I was receiving a mid-range dose: not so much that it would overload my system with toxicity, but hopefully, enough to be effective. Another helpful aspect of the trial, I noticed, was the diligence in scanning participants at a higher frequency than that which I was accustomed. Most important to me, however, has been the fact that my oncologist is able to continue to see me regularly for follow-ups throughout the trial. Rather than switching care teams, I felt like the trial team has become an addition, rather than a replacement.
That said, I was an absolute disaster going into my first set of scans on the trial. After experiencing progression in December and the decrease of estrogen sensitivity as noted in my recent bone biopsies, I had little faith in my body to respond to the drug. My nights were sleepless, restless, and filled with monsters escorting me down the path of failed treatments to my inevitable demise. I don’t know if I’ve ever been in a more difficult mental place in my life, including at any previous point in my diagnosis. When my phone rang, and I answered it to speak with my oncology nurse, not Dr. G herself, I nearly collapsed with relief. The nurse typically does not call to give bad news. The scans were stable. I shook with disbelief, relief, and finally exhaled the breath I had been holding for the last two months. The drug was working. Things were at bay. I had been given another 8 weeks before my next day of reckoning.
At my follow up appointment the next day, my oncologist and I shared our relief at the stable scans. I felt like I had been given an extra token with which to play, and had not realized the extent to which I had struggled, wallowed, and stressed about these results. In the process of her standard examination and our correlating conversation, I mentioned to her that I had had some strange headaches recently. I had experienced some headaches a year ago around this time, and Dr. G had ordered a brain MRI, which had come back clean, but for some potential lesions in my skull bones. She thought that those mets could be acting up again, and ordered another brain MRI to be on the safe side. I didn’t think much of it, and, surprisingly, wasn’t particularly anxious over it. The procedure itself isn’t particularly difficult for me, as I’m not one to be overly claustrophobic, and I felt overwhelmingly reassured at my stable scan results.
I had the brain MRI a little over a week ago. On Tuesday night, my phone rang, with “No Caller ID” listed instead of the phone number. My nurses never call from unlisted phone numbers, and never call close to 9:00 pm. I knew what the phone call was before I answered. I had lesions in my brain.
Once I got off the phone I called Christian, who was in China at the time, and he hung up and immediately booked the next flight home. We were both in shock, unclear how this could have happened. It’s unclear how this will affect my participation with the clinical trial going forward, but I am meeting with Dr. G and the team next week to further discuss our plan of action. We don’t know if these lesions developed when I experienced progression in December, or if they are more recent than that, but there are only two lesions, the larger of which is about the size of a pencil eraser or a small pea, and located in my parietal lobe. On Friday, I met with the neuro-radiation-oncologist who specializes in stereotactic radiosurgery to the brain. In the next few weeks, I will undergo a number of more specialized tests, including a high-res brain MRI to map my brain, and a radiation simulation before the actual procedure in which I have targeted radiation to the brain lesions.
I’m hopeful that this procedure will eradicate the lesions with minimal side effects, but I’m also allowing myself to process this information at the speed I need, and taking things one step at a time. Each step forward regarding treatment is dependent on the previous step, so my schedule, treatment plan, and life feels suspended until we are able to put more of a plan in place later next week. Until then, I’m taking respite in the love and support of family and close friends.