Parotid Part Six, or Meeting Doctor Downer

(Cross-posted to the Parotid Tumor Patients Forum)

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.

MRI - Life in the Loud Lane

(Cross-posted to the Parotid Tumor Patients' Forum)

Those who've been following my adventures know that I'm looking at surgery number 6 for recurrent pleomorphic adenomas. Like cockroaches, mold, and acquaintances who "need a place to stay for a few days" after their families kick them out, some parotid tumors never quite go away. Think "Halloween," "Nightmare on Elm Street," and every other cheesy horror movie franchise ever invented.

This evening I went off to the hospital to have my first ever MRI. This comes right on the heels of my first ever FNA, so we're breaking a lot of diagnostic testing territory here. I went in without a worry in the world, convinced that my experiences with CT Scans and weeks of Radiotherapy had prepared me for a claustrophobic experience. Well, I was wrong. The MRI was one of the weirdest and most claustrophobic things I've ever experienced.

First, a note to the claustrophobes out there. There are many areas and hospitals which provide access to open MRIs. Nothing I'm writing here necessarily has to hold true for your own situation. I'm just saying that if you don't like closed-in spaces you should consider inquiring about alternatives to the traditional MRI.

Anyway, I showed up and was ushered to a back room where a very polite technician of some sort (I really don't understand who does what in MRIs, so they're all techs to me right now). He took some personal information and asked me whether I had any kidney problems. Then he told me that the initial series of scans would take about 20 minutes, that I would then be withdrawn from the tube and given a shot, and then would go back in for a few minutes of more scanning, presumably to obtain contrast studies.

I was asked if I had any metals in my body or earrings or pacemakers, etc. Satisfied that the answer was negative the tech told me I could wear the casual business clothes I had on and brought me down a long hallway to another room where two other technicians sat looking at computer screens. One of them got up and showed me into a room where sat the MRI machine. The room was cold and he asked someone to get me a blanket. Then I was asked to get on the "couch" (what is it with these medical types calling hard, sliding benches couches?), and place my head into a frame there. They slid a home-made pillow bolster under my knees.

Once I was on the couch, my head nestled in the cradle provided, the tech placed plugs in my ears and warned me that the machine was very loud. Then a clear, plastic frame was placed over my head and neck. It was open, so I was feeling pretty comfortable until a second clear, plastic mask was placed over my face. It was like being inside a diving helmet; even had lights on either side for illumination. I was lying there, trying to figure out how to keep my arms folded across my rather ample stomach, when I heard the last warning not to move and the couch slid silently into the tube.

Okay, now I know what a torpedo feels like. I needn't have worried about the arm problem. The narrow tube braced my elbows nicely. The ceiling was inches from the clear plastic of the solid mask. For a non-claustrophobic person I found the experience almost breath-takingly tight.

Then began the noise. The noise is truly loud. Imagine a firestation buzzer going off several times, followed by jackhammering, throbbing, pile-driving, and unmuffled engine noise. Loud, loud, loud. There's no particular rhyme or reason to it from the patient's perspective. You hear one noise, then the other, then another, then back to the original noise, then an escalating chorus. The noise was accompanied by a feeling of movement, the couch shaking slightly with the racket. Eventually the noise reached a crescendo which sounded of all things like a headboat I used to get on to go fishing in the early morning hours in the Chesapeake Bay. The only things missing were the chain smoking Vietnamese fishermen, beer swilling folks of all persuasions, and fishing rods. It was like standing at the stern of an old headboat, feeling the throbbing beat of the rough-running engines as they churn toward the Choptank River looking for better fishing grounds.

Periodically the noise would die for a few moments, but a disembodied voice warned me not to move each time. My shoes felt impossibly heavy and uncomfortable. I couldn't figure out whether I should keep my eyes open or shut. By the way, shutting them actually helps quite a bit. When they were open I would focus on two small, discolored patches above me and ponder whether they were stains, or burn marks, or something left by a panicked patient. I never did resolve the question.

After what seemed like a very long time the couch slid out and I was warned not to move as they selected an arm and gave me a shot. Then it was back into the torpedo tube for more ear-splitting merriment. I was told that part lasted about seven minutes.

Once the MRI was over I was asked to wait so they could produce a CD for me to bring to my doctor. This is a great idea, as it allows the patient to bring the CD to however many doctors one wants.

Overall, this was a pretty peculiar experience, but now I have a diagnostic result which can give my doctor a real perspective on the extent of my problem. It was probably worth it, but I wouldn't volunteer to do it often.

Guess what, Ma? It's another PA ...

It was off to visit with my ENT's partner today. My ENT was out of town and I couldn't stand to wait for the biopsy results next week, so talked them into letting me come in and see the partner instead.

After I waited a half hour a young doctor strolled into the room. When did doctors start looking young enough to be my kids? I immediately decided he was the Chinese Doogie Howser (TV show back in the 90s featuring Neil Patrick Harris as a 17 year old doctor -- guess you had to be there). Anyway, Dr. Doogie was very polite and nice and told me I could probably guess the diagnosis. Yep, it's another pleomorphic adenoma. The good news was that the FNA was benign. Whoop-tee-do. Most of the old hands here know that it's great to have a benign FNA, but you can never say never till the cuttin's done.

Dr. Doogie had enough sense not to talk down to the plump gray-haired lady with the irritated countenance. "Guess you know what that means", he ventured. "Another surgery," I replied. "Yep, I guess it would be what, your third or fourth?" "Try sixth," I said. His face fell a little. "Well," he said brightly, "the usual recommendation would be the surgery and then you should probably consider ..." "RT," I hastened to reply. "Yes, I just finished it in November."

The kid looked crestfallen, so I decided to go easy on him and let him talk. He told me that patients like me are never easy (heck, I knew that, just ask my college boyfriends), and the options for someone who's had RT are limited and doctors hate situations like mine. Sorry to hear I'm upsetting you guys. Anyway, to boil it down to its essentials, we have an escalating menu of varying surgical interventions.

The first option is to just go in there and scoop out the offending nodule, trying as much as possible not to damage the nerves. When last I went through this cafeteria line the doctor's options were pretty straightforward. He went in there, popped out the nasty nodule, then sent me off to RT in the hope that baking the tumor bed would finally cure me. Now we've got an already fried (oops, baked) tumor bed, which means that the surgeon may have to spend a lot more time fishing around for tumor cells and little teeny tumors in their tumor pre-schools, and try to get rid as many as possible. It's possible that we're looking at some nerve impairment because he may feel compelled to dissect the nerve. Think along the lines of someone who uses a knife and fork to peel meat away from a chicken bone. Hard to do it without nicking the bone.

The second option is not so much an option as a main course at the banquet for the mandatory seminar your boss made you attend. Everybody has to pick one of two or three choices. The first problem concerns the skin lost through multiple surgeries. I've already had two re-workings of my scar, so we're beginning to run out of space on my face. Eventually, if we continue with frequent surgeries, we'll have to find a source of skin to slap over the spot. I immediately thought that a loss of skin from my hips, rear, or thighs wouldn't do me any harm, but apparently they usually take the skin, along with some veins to provide a blood source, from the forearm. Not fun. I'd rather send the dish back to the chef.

The third option is a radical parotidectomy. I pointed out that I've already had a total parotidectomy, which he acknowledged, but he pointed out that the only way to destroy whatever it is which brings out my tumor tendencies is to clear the deck and set a new smorgasbord of blood vessels, nerves, skin, and some muscle on that side of my face. He added that a portion of the nerve running to my tongue could be redirected toward my mouth to alleviate the droop, and said I could always get the gold weight in my eyelid to force closure of the paralyzed eyelid. You folks who've been through the radical stuff know what he's talking about. This option would require major reconstructive surgery, something my ENT is not able to do, and would probably require a referral to another hospital - most likely Johns Hopkins.

He told me several times that he felt I should talk to my ENT, and reminded me that I could always ask for a second or third opinion. I was thinking it wouldn't hurt to show up at an ENT convention with my films and highlighted copies of my medical records.

At least we agreed on an imaging study, so I'm off to the MRI on Wednesday evening, and will meet with my regular ENT on Friday. Dr. Doogie told me he wanted me talk to my regular doctor before jumping to any conclusions about my prospects. Still and though, this isn't looking too great.