My Johns Hopkins Adventure

Cross-posted to the Parotid Tumor Patients Forum

Well, it's been a wild ride through this latest surgery with some unexpected results, but not too bad from my point of view.

I was scheduled for a total parotidectomy on July 25th at Johns Hopkins University Hospital with Dr. Christine Gourin. This was to be my sixth surgery and my second total parotidectomy.

After a long evening of last minute work and preparation I showered at 3:00 a.m. and got ready for my trip to the hospital. At first the omens didn't look good. I couldn't sleep. I puttered around doing laundry. Realizing I'd left my slippers in the car I went outside to my Ford Explorer and popped open the glass hatchback so I could rummage around for the slippers somewhere within, only to have my cat walk along the top of the car and step on the hatchback, slamming the metal U-clasp down between my shoulder blades and sending me dancing around the street cursing loudly for a full minute, which I can only hope was not heard by the cute young family that just moved in last week. They sleep with their windows open and I had to wonder what they thought of the insomniac madwoman next door. Call me crazy, but I think the cat did it on purpose.

Nora arrived at 3:45 and we made wonderful time to Baltimore, which was good because we managed to get lost for about 30 minutes. Nevertheless, we arrived before the 5:30 a.m. deadline. The waiting room filled with patients and their families, and a woman came through with a clipboard, rounding up patients. We progressed in a group through a door to another room, a ward with about 20 beds, a number posted above each. As we shuffled through the ward the director(?), nurse(?), MC(?) called names and assigned beds. I got number 14.

Pre-op was a dizzying process of people popping in and out of my little curtained cubicle, confirming information, drawing on my face (doctors and their markers!), setting up the IV, asking me about my history with anesthesia, asking about my Health Care POA. A stream of friendly, helpful people with names like Laura, Lauren, Brandon, Brendan, Bridget, and others whisked in and out, and shortly I was on my way down the hall to the operating room.

As I got on the operating table I was impressed that they had remembered my request to place a pillow beneath my knees to help my lower back. They were a little unsure of what to make of my comment that the table with its cruciform arms looked like a Texas death chamber.

In what seemed like minutes I awoke in the recovery room and knew immediately that the surgery had not been as extensive as planned. I could feel my entire face and my speech was clear. I was uncomfortable, but not intolerably so, and was too thrilled at the lack of facial paralysis to care.

Dr. Gourin came to visit later that evening. I introduced her to my kids and she told me that once she got in there she realized that the scar tissue was obscuring everything. She described my facial nerves as being all over the place, and the tumors as having been on the nerves. She never did find my facial nerve trunk, having given up looking through all the scar tissue due to fear that she would do irreparable damage. She said that she was satisfied that she'd gotten all the tumors this time around, but noted that I cannot consider myself cured. We're actually just hopeful that if I have a recurrence it will be several years before it recurs. If it does recur she's now proposing to go in there and do what she did this time instead of going through a nerve sacrifice as she'd originally proposed. I don't know if this is because there is so much scarring there that success of a nerve graft would be unlikely, but I'm willing to take a chance as long as I can talk and move my face. She told me the drains could be removed and I could be discharged the next day.

Living with the drains was an adventure. I have a hole at my belly button and one below, where the drain was located. It was very pinchy and annoying trying to move around with it. There was another drain under my ear. My face is very round on the left, stuffed full of my belly fat as it is, but it looks to me like I'll finally lose that sunken look I had on my neck. After a day of recovery a doctor came in and pulled out the drains. We went for the abdominal drain first on the assumption it would hurt more - the doctor snipped the stitch holding it in and had me breathe out as he pulled. The facial drain was just nasty. He wasn't part of my surgical team and was surprised at the length of the thing. I yelped in pain when it came out, but after an hour I felt pretty good.

My daughter drove me home, threatening to wreck the car if I continued with my helpful driving advice. I gingerly climbed the steps, the young family next door trying not to stare too inquisitively at my new look. At home I've been bored to tears and horrified at the state of American television in general. The dog was happy to see me but the cat was completely freaked out over my disappearance and dramatic reappearance with a different facial appearance - if you follow my drift - and not until the early morning hours of the next day did she consent to come back inside and stay with me. She might have been worried about what I remembered of her previous attempt on my life. Once the decision was made to return she promptly made herself comfortable on my punctured lap. This morning I had a long shower and nothing popped out or rusted, so I think I'm on the road to recovery.

All in all, this was not a bad experience. Not only was I impressed with Dr. Gourin, but also with the responsiveness and competence of the Hopkins nursing staff. Even a call in the middle of the night is not ignored as it is in so many other hospitals. Eating's a little sloppy, what with the stiffness in my jaw, but it doesn't really hurt and I've been able to nibble on pieces of bread without difficulty. No problem in a few days.

Four Weeks to Freaky Friday

It's exactly four weeks until my scheduled surgery. In twenty eight days, Lord willin' and the creek don't rise, as an old friend of mine likes to say, I should be on the road to Johns Hopkins for a little facial rearranging. I commented to a friend today that I'm looking forward to it like a hole in my head, then had a good chuckle thinking of how that's exactly what we're talking about here.

I haven't done a thing in preparation and now I'm frantic to play catchup. I don't have an appropriate chair to sleep on after the surgery. I expect to be swollen and incapable of lying on a bed for a few days afterwards. What about the physical, the lab tests, the chest x-ray, the dermatological checkup, the visit to the dentist for one last cleaning? What if somewhere along the line something unexpected crops up and the surgery is delayed? Sure, the fifth grader in me would love to see the big test canceled due to snow, but the grownup knows it's just a delay and not reprieve. What about the house? I should be at home rearranging it all, painting, throwing out all the accumulated junk, improving the bathroom and making it more accessible to someone who expects to be a bit of a mess for a few days. What about my work? How much time should I take off? Should I schedule things and just hope I'm available? Lots to think about.

What about recovery? I was thrilled to find a post on my favorite site, the parotid tumor patients forum, from someone who has the exact same surgeon. His surgery went very well - only a little facial weakness afterwards - but today I felt a little whimper of anxiety when I discovered his post about follow-up, where he referred to seeing the doctor and getting a referral to a speech therapist. Speech therapist? Why does he need a speech therapist? Did the operation hurt his speech? Does that mean it will hurt mine? We all know I talk for a living, right? I mean, I don't just talk every once in a while to communicate with co-workers or present projects. No, I talk morning, noon, and night. My living is built around my ability to talk. Heck, all three of the ways I make my living - practicing law, performing marriages, teaching college students - are built on this glib tongue. Talking is probably my second favorite activity in the world, right after reading.

Looks like the next few weeks are going to be rather stressful. I'll just have to resolve to find out from my doctor the answers to some of these questions instead of being such a wimp. Okay, maybe I'll have a few issues afterwards, but there's no reason why I can't find ways around such difficulties. Maybe the comment about a speech therapist wasn't even related to the surgery. Maybe I'll just have to say "what the hell" and move on. Stressing over it won't help. Oh well, the ball game's on - Washington Nationals v. Baltimore Orioles! Well, I can't miss that. Go Nats!

Boppin' Up to Hopkins

Cross-posted to the Parotid Tumor Patients Forum

This morning I arose early, put particular vigor into screeching my 17 year old out of bed so he could get to school on time, gassed up the clunky SUV (sixty four bucks?!! Sonofa%!#*$%3$Q$#*@ gas prices!), picked up my friend Nora from the office, and headed up the road to Johns Hopkins Medical Center in Baltimore, Maryland.

We arrived a full hour ahead of the appointment time, which gave us the needed 15 minutes to find a parking space in the crowded garage. The pre-registration clerk took me immediately, looked up my name and information, took a photocopy of my insurance card, issued me an orange card with my name and medical records number, and directed me to the 6th floor.

I checked into Otolaryngology and was handed several forms to fill out. One form tried to assess how much I use my voice and asked me to rate myself on a scale of 1 to 7 for talkativeness. Nora suggested I create an 8th category called "Carla" and circle that. Ah, Nora, such a help. Another one asked a number of questions aimed at determining my mental health status. This is a sensible step which allows for early psychological intervention for depression. We decided I'm not depressed, just delusional, and handed in the completed forms.

We were then escorted to a very cold examination room to wait for the doctor. Apparently the HVAC isn't totally under control in this old building, but fortunately they were dealing with a couple of menopausal women prone to hot flashes so the situation wasn't as bad as it could have been. A nurse came by, apologized, and politely explained that the doctor had been delayed. Sometimes delay can't be helped, but little touches like this help make things easier.

After a long while another nurse entered and said she was going to spray something up my nose to make the doctor's exam easier. Alrighty then, after six of these stupid tumors over almost four decades someone has come up with something I haven't heard of before. She sprayed something up my nose, and then sprayed something else up my nose. The front of my nose became numb and my throat began to feel sore. Think drunk dentist run amok with a shot of novacaine, hitting the nose instead of the gum.

After a while longer the doctor came in. I was immediately impressed with her manner. Naturally, after asking me whether I'd ever had any problem with my nasal cavity and being told no she said she didn't need to do to my nose whatever it was the nurse had sprayed my nose for. A numb nose for nothing - the story of my life.

After interviewing me, examining me, reviewing my file, and expressing delight with the very detailed internet appointment form I'd filled out, she invited us back to a computer to look at the MRI. Just an aside on that form: If a prospective patient fills it out thoroughly, referring back to documentation and including all important details, it provides an excellent supplement to the in-person interview with a doctor.

The doctor did the usual poking and prodding, at one point asking me what the small mass on my jaw was. Hoowhee! Found another one. This lady has some excellent hands because even after being shown exactly where the lump is I have trouble palpating it.

At the computer we looked at my MRI. The doctor ran several frames up and down and explained carefully exactly what she observed. She described the tumor as more a cluster or clump of tumors, and then, upon closer review, pointed out the tell-tale white circle indicating another pleomorphic adenoma on my jawline. She explained that PAs show up quite white on contrast MRIs. Makes me wonder why doctors don't order contrast MRIs more often in such cases. She also pointed out the huge emptiness on the left side of my head (hey, no wise guy remarks here!) and described how the muscle flap for my 1983 parotidectomy had been fashioned to make my appearance more even. I do have a cavity along the left side of my face and neck, but it's so artfully covered that it's not too visible to casual observers. To me it's still a great big hole in the side of my head. Dr. Gourin answered all our questions, cycling through the slides to make her points, and then returned with us to the refrigerator, um, exam room, to discuss my options.

She recommended that I have surgery with complete dissection of the facial nerve. She fingered the scar which stretches down the side of my neck and said she believed the entire scar needs to go, that something about the way it looks and feels along my neck bothers her and it may be contributing to my problem. She proposed a facelift incision, resection of the entire scar, and repair of the cavity through use of a large chunk of fat from my abdomen. For the first time Nora looked a little envious. Instant tummy tuck - woohoo! Dr. Gourin also proposed that once she dissected the entire facial nerve she irrigate the area through a procedure the name of which I can't recall. It's late, so I'm not going to call Nora and ask her if she remembers.

The doctor told me she does not recommend a nerve graft, but warned that the dissection and irrigation will result in nerve weakness from which it is hoped I will recover. I told her I'd actually experienced the same problem after my total parotidectomy and she found it a hopeful sign that my recovery from that procedure was so complete.

After Nora and I got some proposed surgery dates from the scheduler, Dr. Gourin had us go to her office so we could observe some photos of the procedures she was describing. Getting past the ick factor, these photos were fascinating. The facial nerve branches out like a hand and is easily observed just past the skin. One reason Dr. Gourin proposes the fat insert is to provide some cushioning between skin and nerve. She was astounded that I've been through five surgeries with incisions right along the path of the nerve and never suffered any serious damage, not even when my last two surgeons resected their incisions. She showed some photos (with the eyes and upper parts of faces blocked out for privacy) of people on whom she's done the nerve dissection/fat insertion procedure. Wow! Almost no difference on either side of the face. It's very difficult to see what side the surgery was on. She said a medical journal article will be published soon on the results of this work, so within the next few months this information will be available to everyone.

I asked Dr. Gourin about the harmonic scalpel. She loves this instrument. It seems that when she was enticed away from Georgia by Hopkins (they recruited her), the first thing she asked for was a harmonic scalpel. For those who haven't read my previous posts this is a scalpel which stops bleeding through ultrasound rather than through cauterization or clamping. This allows for a cleaner surgical field, closer work on the nerve, and minimizes inflammation. Moreover, she reports that it cuts (heh) about an hour off the surgery time.

She expects the surgery to last about 5 hours and estimated two days in the hospital unless I was dead set on going home, but that if I insisted on going home I'd need someone capable of assisting me. Naw, I think I can tolerate a couple of days in the hospital where the cat and dog can't find me and crawl all over my abdominal incision while trying to claim me from each other. It looks like we'll be doing this some time in June or July to give me time to arrange for about a two to three week gap in my schedule. Of course, the problem for me is my ability to speak and be understood and appear in public. I'll have to work around it somehow and hope I have a recovery as good as the one I had in 1983.

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.