Off I went to see my ENT yesterday to review my MRI and discuss my options. For moral support I took my friend Nora, a fact-oriented, objective, and somewhat unsentimental journalist/lawyer who believes in collecting all the facts, reviewing all the options, and then maybe panicking just a little - just enough to justify a visit to the local watering hole up the street to steady one's nerves.
The ENT, whom I'm referring to here as Dr. Downer because he kept telling me facts I didn't want to hear as opposed to the fantasy facts I'd constructed in my brain (sample: "Guess what, Carla? We reviewed your MRI and discovered that the thing we thought was a pleomorphic adenoma was in fact a lump of tummy fat which migrated from your rather impressive middle and took up residence along the side of your head. Lord knows how long this might continue. It could be you'll end up with a stomach as flat as an anorexic super-model's chest ...").
Unfortunately, Dr. Downer showed a depressing attachment to the real world and scientific fact, and thus told me that he had reviewed my file, reviewed my MRI, and pretty much agreed with Dr. Doogie about my diagnosis, prognosis, and whatever other 'osis one could consider. The facts appear to be that I have a particularly aggressive form of pleomorphic adenoma which laughs in the face of radiation therapy and is about as persistent as a time-share salesman at a third rate ocean resort.
I like this guy. He was clearly disappointed and told me I was the first recurrence he'd ever had since his residency lo these many years ago. He has an excellent track record and is conscientious and careful. I'd brought my MRI CD, but he didn't need it. He'd already pulled the hospital record off the computer and taken a look.
We talked about my options. They're pretty much as Dr. Doogie described them last week. He agreed that at this point the best course for me would be to make an appointment to see someone at either Georgetown or Johns Hopkins and have them take a look. I've already decided to go with Hopkins because there's cutting edge facial reconstruction work being done there.
If I have to have nerve grafts and facial reconstruction it may be that I will have to consider either seriously curtailing my work for a few months in the hope that my face will recover enough, and my voice recover enough, that I can return to my life of blabbing for pay. Almost everything I do for a living is vocally oriented. My life is one long round of constant talking. I talk in the courtroom, in the lockups, in the hallways, on the phone, in my office, at weddings, and in my classroom. I negotiate, argue, inform, review, nag, gossip, preside, and teach. Most of my talking is in public and I worry about the prospect of jurors and judges staring at my face and not hearing what I have to say, assuming I can say it well enough to be understood. I worry that the strain of hours worth of speech may be too much for transplanted and traumatized nerves and muscles. This crisis is not merely a concern about appearance, but about my ability to work and earn my living.
These things may not come to pass. There is the prospect that something less drastic can be done, and there is always the option to do nothing until something HAS to be done. We discussed that, too. I said "the FNA is benign, but you cannot guarantee that it's not a carcinoma, can you?" His lips tight, he shook his head no. I said "the tumor feels different this time - maybe it's more than one," to which he replied that it appeared to be one, but it's not shaped like the golf ball he popped out of my head last year. It has an irregular shape and consistency. Hard to know what to make of this fact. Maybe it's significant, maybe not.
The doctor advised me to arrange for ALL of my old scans and records to be sent to Hopkins, including the slides from the last operation. Maybe something was missed at the path lab. As I left I told him I'd hoped the surgery and RT would at least buy me ten years, as I've always suspected that I'll never be fully free of this problem, and he said "I was hoping for another fifty." We laughed.
Nora and I left the doctor's office and decided to meet an hour and a half later at our favorite sports bar up the street. Over a couple of beers we decided that I'm just going to have to look into ways of practicing law that may not require so much yakking. I'm a good legal writer, proof-reader, and editor. She suggested that I start seeing some way to market my writing and research capabilities to our often clueless colleagues. We agreed that I need far more information before I make any decisions. Nora's going to accompany me to Baltimore.
After I left the bar I got a surprise call from my radiation oncologist telling me he was concerned about my recurrence and had pulled and reviewed not only the MRI, but all the CT scans and x-rays taken during my treatment. He was puzzled, telling me there was no sign of the recurrence in anything from my treatment period. He told me that with the same information in front of him that he'd had last year he would still have made the same treatment decisions and he could not understand why I had such a quick recurrence. Just lucky, I guess. I appreciated the call. He didn't have to do it. He asked me to please share with him anything I learn from Hopkins and I agreed.
So that's it. I've exhausted my options with my surgeon and hospital, so it's time to range farther afield and see what Hopkins has to offer.
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