Yesterday I was introduced to my new radiation oncologist, whose blog nickname is also Dr. P, which might get confusing, so I guess I will refer to her as Dr. P(MD), to distinguish from the Dr. P that I used to see in NY.
Without going into much detail, last week was a little bit distressing for me as a patient, for reasons wholly unrelated to the actual disease. And then there was the fact that my latest MRI, which I had right before New Year’s, wasn’t the slam-dunk of good news it had always been. I was left hanging for a bit. Even though the single weird finding in the report was a little suspect, because it was not visible at all with contrast dye, it bothered me not to know what was going on. I am no stranger to the sneak attacks that melanoma can perpetrate on the brain.
This week brought first good news from Dr. H about my eye condition — now most of the way to resolved — and then today, a visit with my new doctor that was unexpectedly reassuring, pleasant, and restorative.
At NYU, the radiation oncologist was the second doctor I met after my surgeon. And when I had an MRI, I’d jump out of the machine and head straight to neurosurgeon Dr. K’s office for him to scroll through the scans, point out my progress, and tell me he was adding my slides to his conference presentations. When I had a CT, I had to wait two days, then went in to see Dr. P and hear how things went in person, but we never looked at the images.
Here in Maryland I’ve lived a very different patient life. I’m post-crisis. The last time I had any active disease was 2015. I have been getting scan results as messages through the hospital portal. Except… maybe I’m not totally post-crisis? The meds have caused their own problems, troubling my eyes for months and sending my care team into overdrive trying to figure out how I might stay on this class of meds when they seem to have it in for my eyes. My latest bout of optic neuritis was caught early; had it not been, I could have sustained permanent vision damage.
I was already predisposed to like Dr. P(MD) because I read some good reviews about her on the web… and because unlike 99% of the medical offices I go to in the same complex, her office validates parking. This is huge. When I asked why, it was explained to me that since radiation patients come in for treatment so frequently, parking would get very expensive for them very quickly.
I arrived for my appointment, which was in the same building where I get my scans, and immediately sensed things worked differently here. A woman who seemed like a social worker was helping a patient figure something out and seemed to be in no rush. There was a coffee corner. No long wait. Everyone made extra efforts to pronounce my last name correctly. I sensed the same humanity that pervaded Dr. P’s office at NYU.
The nurse who took my vitals, nurse manager J, noticed immediately that I was wearing Invisalign. She was too. We talked about it and compared notes for a lot longer than I imagined a medical professional would ever allow themselves to, while she took my vitals. She had a good suggestion for a way to clean the trays, which I’m going to try.
J was already familiar with my chart, but when she went back in to check something, she noted how many pages long it was. 393 pages long. Seems that my body has already written a hefty tome. Just not the kind I’d want to write.
She left the room and conferred in the hallway with Dr. P(MD), and even their tone of voice was different. Dr. P(MD) walked in, a young, energetic and kind presence. We shook hands and she told me how happy she was to meet me. I decided to hold off crying at that incredible moment, and another one soon followed. She wanted to get to my MRI results right away. I asked what she thought of the artifact. She did not just give me an opinion. She said, “Let’s take a look together and decide, shall we?”
In saying those words, she: a) acknowledged the number one reason I was anxious to be sitting there, and b) instantly brought me on as a team member. She was excited to show me around my brain. Later on in the visit, she also showed me images from my latest CT. Guess what? In almost seven years of dealing with cancer, no one had ever offered to show me my CT images. And for some reason I’d never asked. They were fascinating to see, almost artistic.
Almost all of meThere were many more moments of connection and of caring in that one hour visit (and she informed me that Dr. K, who used to be the one looking after my brain, is “famous”) and they keep resurfacing in my mind. But one thing above all really got me. I was speaking about my radiation history (which is mercifully short, considering what I’ve been through), and mentioned to Dr. P(MD) that I’d taken part in a research study at NYU in 2014, which combined a short course of radiation to the lung with immunotherapy, to see if the radiation boosted the effectiveness of the drug.
“That has become the standard now, did you know that? It is standard treatment protocol,” Dr. P(MD) said, extending her hand. “So thank you. Thank you for taking part in that study. You made it possible.”
I was confused for a moment. I’m not the one who gets thanked! And anyways, I eventually got colitis from the immunotherapy, so I had become accustomed to thinking of myself as a failure in that regard. I’m always the one who does the thanking for still being alive in spite of what were some (previously) crazy odds. I’m sure that I was thanked at the time for enrolling in the study — although my and J’s most vivid memory of the appointment where I enrolled in the study was when I asked Dr. P why anyone would not want to take part, and she replied she’d just had a patient turn her down, saying (in Dr. P’s fairly convincing version of a Russian accent), “I not your guinea pig.”
It’s been a few years now, and I figured the value of whatever contribution I had made there would surely have worn off in the face of what seems like constant discovery and innovation in the treatment of metastatic melanoma. But caregivers remember. And it turns out that some of them, the good ones, will still say thank you. Last week as a patient nearly broke me, but this week I got my soul back. Thank you, Dr. P(MD).
I’ll be starting the new pair of medications tomorrow, Zelboraf and Cotellic. (Taken alongside the two now-disqualified combos, Braftovi/Mektovi and Tafinlar/Mekinist, these names give me such rich fodder for lexical and semantic analysis — like a Rorschach blot test in letters.) No fasting, no refrigeration, but on the downside, near-certainty of sunburn if I ever leave the house without sunblock on my exposed skin. And, of course, the lingering fear of possible eye damage, which has been a constant while I’ve been on this class of medication.
As far as that pesky “area of artifact” in my hippocampus, we will have a rematch in the MRI machine in early April. The scan is in the same building as Dr. P(MD)’s office, so when I come out of the scanner I will go right to her for a verdict. “And if there’s anything there, we can just zap it,” she said. A slightly different modality of zapping here (linear accelerator instead of gamma knife), but the good part is, that means I’d wear a futuristic plastic mask like the one pictured above, instead of having a titanium frame bolted to my head (which was a little exciting, maybe, but not something I’m eager to have happen a third time). This feels like an upgrade. All of it. Here’s hoping.
I'll Live 