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!

Start the Popcorn - A Couple of Interesting Videos

While perusing the parotid tumor patients' forum I found a post from a contributor of two videos floating around the internet which demonstrate parotid tumor surgery with the help of a nerve monitor. The monitor helps prevent facial paralysis by sounding an alarm if the surgeon starts damaging the nerve.

The first video is a straight-up surgical instruction video from the University of Michigan. There's almost no audio and little explanation, but it's a good peek into the technique used for such surgeries. Here's the link: http://anatomy.med.umich.edu/surgical_videos/parotidectomy.html

The second is the following from Dr. Kevin Soh, of St. Elizabeth Medical Center in Singapore. This is a very helpful which not only gives a clear explanation of the anatomy of the facial nerve, but explains how the nerve monitor works and demonstrates the surgical techniques used. Neither one of these videos is for the squeamish.

Facing the Elephant

I posted this on the Parotid Tumor Patients Forum on April 20th as a sort of idle thought, and was surprised at the positive response. As of today 182 have viewed it on the forum, and several people have posted comments there telling me they found it encouraging. We forget sometimes how powerful it can be to strive to bring a sense of perspective to our problems.

In ancient times the Romans were traumatized by the advance of Hannibal and his army, who crossed the Alps with their war elephants and swept down the Italian boot, gathering supporters and making alliances with the Cisalpine Gauls and other Northern Italian tribes, until Rome itself was threatened. The Roman legions, called from levies upon the young men of all of Rome's citizens and the surrounding towns, met Hannibal in battle and were destroyed in the battles of Cannae and Lake Trasimene. These battles, which were every bit as destructive of Rome's youth as World War One was of the youth of France, Britain, and Germany, became legendary in Roman history for the presence of the elephants, and ever after, throughout Western European history, a youth's first encounter with war was referred to as "seeing the elephant".

Sometimes I think I'm getting ready to face the elephant. I'm not new to it. I've had five surgeries, and one of them was a total parotidectomy, but somehow it all feels new again to me, this knowledge that in a few months I'll be setting off for Johns Hopkins, watching them set up the IVs and knowing that soon I will be asleep and when I wake up I'll be uncomfortable and my face will be swollen and my abdomen will be sore (please, God, let it be smaller ... I can TAKE smaller), and I'll be facing recovery once again from facial paralysis and surgery. And in the wee, small hours of the morning sometimes this prospect frightens me. Last night I had the very difficult task of telling my 87 year old mother that the struggle continues, and I am once again going under the knife. But then I remember that I have wonderful friends and a loving family. I remember that I have three beautiful children, all of them adult or darn close to it, who will be there to greet me when I wake up. Right now they are all three of them beautiful and healthy. Isn't that what I always say I want? I remember that I practice in a jurisdiction where the judges are downright protective of their lawyers and will do anything to make sure that nothing averse to either client or lawyer happens as a result of this surgery. I remember that I live in a great country, that I have access to spectacular medical services, that I have lived 50 years and the issues which might have concerned me very much 25 years ago concern me a lot less now, because the older we get the less it matters to us how someone looks or whether someone might be a little plump or their skin might be a bit wrinkled. With age has come the realization that the important things are the quality issues - my family, my friends, my opportunities, and the beauty that surrounds me every day.

I'm just saying ...

So maybe I face the elephant again. But the elephant to me is not an unknown and it is not a mindless terror. It's something I can handle.

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.

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.

A Collection of My Posts to Date

In early 2007, when it became clear I was on my way to a fifth surgery for removal of the pesky and persistent pleomorphic adenomas from my left parotid gland, I started posting accounts of my experiences to the exceptional Parotid Tumors Patients Forum found here link. I originally cross-posted all my diaries to my political blog, Catzmaw's Commentary, but this forced people to get an eyeful of my political views when all they wanted was a little information about radiation therapy and what it's like to experience it. There are many resources on the internet discussing types of radiation therapy, length of radiation therapy, and the conditions for which it is prescribed, but a shocking lack of first person accounts of what it FEELS like to experience RT. Accordingly, I did my best to express what it felt like as it occurred. Feel free to post your own experiences, and if you are suffering from anything having to do with the parotid gland, by all means go to the link I posted for the Patients Forum. It is the best resource out there for people with these peculiar and inexplicable tumors.

Sunday, April 15, 2007
Living With A Parotid Tumor

I've been pretty busy working lately, which accounts in part for why there haven't been any new diaries, but there is also the knowledge that in a few days I will be having surgery for the fifth recurrence of a medical oddity known as a parotid tumor. For all the normal people out there who have never heard of the parotid gland, it is the largest salivary gland in the human body, a matching set on each side of the head, and is perilously close to the facial nerve and nerves controlling things like eyelids and ears and whatnot. Four times I have had a form of tumor called a pleomorphic adenoma, a benign and largely painless thing which just keeps growing until it is taken out. My four surgeries took place starting in 1974 and continuing to 1983, with varying degrees of success. After nine years of surgeries just about every other year I decided to simply ignore the next recurrence, which started when I was about 26 years old and when my family and career were just getting started, and has been growing inexorably to this, my fiftieth year. Time for it to go.

The problem with parotid tumors is that sometimes they can "go south". In other words it is possible for my benign pleomorphic adenoma to become a carcinoma ex pleomorphic adenoma. This, and the fact that the darn thing is really sticking out of my head now, covered only by a hank of my graying, thinning hair, means it is time to take out the trash. The surgery is on April 19th. In a few months I will undertake radiation treatment, whether or not the biopsy is bad, in order to try to prevent or at least delay another recurrence. Each recurrence increases the possibility of a malignancy developing. The problem with radiation treatment is that there is some research indicating that a recurrence after RT is more likely to be malignant than it would have been if the RT hadn't been undertaken, but by the same token that is only if there is a recurrence. At this point the likelihood of a recurrence if I do not have the RT is 100% and if I do have the RT it's more like 50%. I'd rather take a chance of a bad recurrence for the opportunity to have no recurrence, instead of sitting around waiting for the inevitable next recurrence without the RT.

So the tumor's coming out in an outpatient procedure. If all goes well I'll be up and running around after a few days. If not so well, then I may have some problems with my eyelid - the transgeminal nerve which controls the eyelid runs through the tumor - and my eyelid would not be able to close. There's always a danger of facial paralysis, but for some reason this does not bug me as much as the thought of having a Pinkerton eye (we never sleep!). If my lid is affected then it may affect my sight, which will in turn affect my ability to do close work. If the facial nerve is damaged I may look like I have Bell's Palsy, but as long as I can talk, see, and swallow I can live with the idea. It no longer frightens me, as it did when I was a young litigator starting out, that my looks could be so affected. Guess we'll know after Thursday.

Starting Radiation Treatment Next Week

Posted By: CarlaFW
Date: Thursday, 2 August 2007, at 10:27 p.m.

Well, I've gone and done it. After dillydallying, ducking, and diverting myself for the last few months since my April surgery I've finally started preps for radiation treatments. After five recurrences during the last 34 years it's clear something a little more drastic than waiting for the next pleomorphic adenoma to grow in is called for, so I'm ready to roll.

I've been to see the radiation oncologist twice this week. He's very comfortable to be around and his office is efficient yet lowkey. On Tuesday I showed up to have my mask made. This is the thing which will be placed on my face to keep me immobile during the treatments over the next few weeks. I'm curious about others' experiences of this rather bizarre process. I'm not claustrophobic, but having a large, warm, rectangular, meshy, waxy thing placed over my face like Saran wrap and strapped to a table was a bit unnerving, especially when it began to stiffen. However, the reality is it wasn't too bad. You can actually see and breathe through the thing. There was a lot of marking of things with green magic marker, bits of masking tape being torn off and slapped onto it, and various terms being tossed about. Hard to follow for this math-phobe, but they answered all my questions to my satisfaction.

Today I went back for a bit of tinkering. This time my doctor greeted me with flat piece of pink wax upon which had been crudely drawn an ear outline. He snipped and worked it and kept fitting it over my ear. Once he felt it was sized right he picked up a lead disk, traced an outline of the wax onto it, and more snipping and shaping ensued. Come Monday I'm assured this thing will have a wax coating. It's to protect my ear and ear canal from the radiation. After that I had to lie on a table for about 15 minutes while more measurements were taken, and then two tiny tattoo dots were put on my temple and front of my ear. They're hardly noticeable.

I'm told treatment will be mostly with electrons, calculated to appropriate depths at a strength of 9 million volts(!?). Electron treatment is supposed to be far less destructive than photon treatment since electrons are particles and photons are rays. It's possible that due to some earlier involvement of my lymph nodes in my fourth surgery that I may have to have photon radiation on the nodes, but we'll cross that bridge when we get to it. Right now it looks like we're just doing the electrons. My doctor wants to review my ancient file and make a final determination. He told me that my record makes me a little bit of a medical anomaly and he and my surgeon are planning to present my case to some meeting next week. Sounds like fun.

My friends' crazy senses of humor are a help. Some of them are planning to get my mask after we finish the treatments, cast some molds, and create "cargoyles" for various places like their gardens and maybe my office. The kitschier/tackier, the better. We wouldn't want to leave me with any shreds of dignity, would we? Maybe we'll fashion a "twin" for me for the high occupancy vehicle lanes.

Anyway, Monday's the big day. We'll see how things go.

This is a post made the same day to the Parotid Tumor Patients Forum

Thursday, August 02, 2007
Radiation Therapy Follies

The last few months have been a whirlwind of weird medical issues and elderly relative caretaking responsibilities. Oh, and there's also running the business and all that. I haven't posted in a very long time, but I've missed my blog.

Starting next week I begin radiation treatment for my little parotid tumor problem. Although the April surgery came back with a benign pleomorphic adenoma diagnosis, the fact is that without drastic measures I will have another - sixth - recurrence, and that each recurrence increases my chances of developing a malignancy.

Accordingly, I agreed to radiation treatment. On Tuesday I went to my radiation oncologist and was fitted with a mask. A large, rectangular, waxy, gauzy, heated thing was pressed down over my face as I lay on a CT Scan table and strapped down. As soon as it began to cool it started to stiffen. Not a painful experience but a bizarre feeling. For a fleeting moment I thought "I have to get out of here" as I considered ripping the damn thing off and fleeing. It passed, but I realized then that for the truly claustrophobic it has to be a miserable experience.

As the thing cooled they huddled next to me, drawing on it with a green marker and sticking marked pieces of masking tape in various spots on the mask. The two doctors worked companionably with each other, and it felt oddly like we were all involved in a grade school science project together with me as the test subject.

They told me they planned on using electron radiation primarily and hoped to avoid using photon radiation. To me radiation's just whatever is likely to make me glow in the dark, so I had to ask the difference. Well, it seems that electrons are delivered by a particle beam which can be tweaked and calibrated to a very subtle degree. They can be programmed to a great range of intensity and depth, and upon reaching their calculated depth they dissipate. Photons, on the other hand, are rays and keep going past the point of their original focus. They are necessary for deeper, more radical treatments. I asked if this is why Star Trek features photon torpedoes but no electron torpedoes. "Sure," replied one doctor.

After about 20 minutes the mask was removed and I was left with green marks down the left side of my face which came off readily with an alcohol wipe.

Today I went back for some tweaking and discussion of my case. The oncologist sat next to me with a wax slab upon which was a crudely drawn outline of my ear, and he snipped and shaped it to fit the ear, then traced it onto a lead sheet and cut that out. Again, he and the other doctor, his assistant, chatted companionably, exchanging little pointers and comments. "He's been with me for 23 years," he said of his assistant. "Since he was a kid." There was much happy talk about how well the ear shield turned out, with compliments all around from assistant and staff, and this I somehow found comforting. There is much to be said for making a patient feel as if she's participated in a joint effort rather than like a project to be worked on.

By Monday morning the shield will be coated with wax and I will wear it for each of my treatments. It feels strange but beats having stray electrons rattling down my ear canal and wrecking what's left of my hearing on that side. Given my history - five recurrences over 34 years, the oncologist told me that he was considering photon radiation of my lymph nodes. Ick. I'd much rather deal with the kinder, gentler electrons, but I'm not the expert.

The ear shield done it was time to take more measurements. Once more I ended up on a table, which was moved around and situated under a boxy looking machine so close it almost touched my face. The table moved smoothly and swiftly, like the beginning of an amusement park ride. Both doctors seemed inordinately pleased with the ease of their measuring and calibrating and more drawing on my face ensued. Then a tiny tattoo point was made on my temple and another on the scar directly in front of my ear. The one on my temple hurt and bled and made me wonder, not for the first time, why anyone would volunteer to be tattooed. The second one I hardly felt at all since the nerves are so deadened there from five separate surgeries over the same spot.

As I prepared to leave the office the oncologist told me he and my surgeon are going to present my case to a roundtable of doctors. It seems I'm a medical anomaly with my early onset of parotid tumors and my recurrent and never fully effective surgeries. Having hung out at the extremely useful Parotid Tumor Patients Forum online I know of situations a lot stranger and certainly more serious than mine, but that's a worldwide forum. I don't imagine they've seen that much of it on their little patch.

So there it is, the little problem that's been occupying so much of my time and attention these last few months. Now that it's getting underway maybe I can stop fretting over it and fret over more important stuff, like this stupid war and our equally stupid administration. Now there's a real problem.

Posted by Catzmaw at 11:18 PM 5 comments Links to this post

First Week of Radiation In the Books

Posted By: CarlaFW
Date: Friday, 10 August 2007, at 10:38 a.m.

Well, I've finished the first week of radiation. It's 9 million volts of electrons every morning at 8 a.m. It's just a regular appointment I keep every morning, after which I proceed to work or sometimes home if I feel like a little nap. So far, so good.

As to side effects, yesterday I got the shock of my life when I accepted a spoonful of Italian ice. The right side of my mouth felt like I'd just broken a tooth and slapped ice on top of it. Ouch! My tongue feels slightly larger. The left side of my head, which is the treatment side, has been stiffening up lately. Yesterday my jaw felt very stiff on the left and I found myself working it and stretching it like the Tin Man after a rain. Last night I couldn't sleep due to the ache in my shoulder radiating down from my neck. But aside from this irritating tightness I haven't got much to complain about. I feel more tired than usual, but have been able to work. There is a sense of ditziness that hits right after the treatment - where I have trouble finding words and completing thoughts - but that sensation burns off after a little while, and part of that may be related to menopause. Or maybe I'm just ditzy and never noticed it before. Who knows?

Last night I did a little research and found some reference to hearing loss related to electron radiation, so am planning to ask the doctor about that on Monday. My last tumor was so large I had impaired hearing, but after the surgery my hearing improved. I'd hate to lose it again, but sometimes you can't make an omelet without breaking a few eggs. More on this later.

Anyway, now I have two days before I have to go back again, a welcome respite, and then back into action on Monday. It helps enormously to have such a friendly, helpful, responsive staff. I've seen pictures of their children and favorite pets, heard anecdotes of family adventures, and gossiped about hair care and favorite foods. They're downright neighborly.

Second Week of Radiation Complete!

Posted By: CarlaFW
Date: Friday, 17 August 2007, at 9:32 p.m.

Another week has passed and another week of radiation is done. There's more fatigue, but that may be related to the fact that my teens don't seem to understand that I need a lot more uninterrupted sleep these days. They're used to their insomniac night owl mother prowling the house at all hours and so think nothing of starting conversations or calling me from their friends' houses at 1:30 a.m. Today, my business partner finally called my daughter and asked her to read the riot act to her brothers since I'm walking around with bags under my eyes large enough to shutter a window.

With the exception of a small computer problem which caused my treatment to be postponed until Thursday afternoon there have been no problems. As for side effects I've noticed a stiffness in my jaw and next to my ear, and a mildly bruised feeling on the side of my head. I have started to see a diminution of my sense of taste, especially along the left side of my mouth, and my teeth and gums are increasingly sensitive. This problem I am treating aggressively with high fluoride prescription toothpaste and Sensodyne after every snack or meal during the day. The sense of scattered thinking remains, although maybe that's the fatigue more than anything else. I continue to pause to grope for words, probably to the relief of colleagues who needed a break from my constant prattling.

Looking forward to my little weekend break.

Third Week of Radiation Done

Posted By: CarlaFW
Date: Saturday, 25 August 2007, at 8:04 a.m.

After three weeks of radiation I have to say that electron's definitely the way to go.

This week the doctor increased the thickness, by one centimeter, of the bolus, the gel-filled thing resembling a mousepad which they place over my ear after taping the ear shield to my head and hair. The idea was to get closer to the surface of my skin, and I noticed an immediate increase in the sensation of a sunburn within a day or two. I was surprised at how much heavier the bolus felt with the added thickness. Like lead. I also asked why, after counting off the seconds during each treatment, there is as much as five seconds variation in treatments. The technologist told me that she measures the barometric pressure, humidity, and temperature of the room every day and the readings are input into the computer, which then adjusts the time to allow for the proper dosage. The dosage determines the amount of time the treatment is administered, not the other way around. The doctor gave me an appointment for Tuesday to review my treatments. Several weeks ago he told me he must decide whether to "go deeper" after my lymph nodes, and I got the distinct impression this meant switching to protons. Can only hope I'm reading this wrong.

So here we are, after the third week and fifteen zappings, and the worst side effects I can report include increasing fatigue and an ear that feels sunburned. The fatigue is a real drag. For a self-employed person no workee equals no eatee, so I've been trundling off to work every day after radiation. Yesterday one of my colleagues dropped in and told me she'd seen me leaving skid marks on the sidewalk from hauling my rear to the courthouse. I feel just as I did in college when I came down with mononucleosis in the last month of my last year and had no choice but to continue going to class, writing papers, and taking exams. Brutal.

Intense feelings or aggravation or agitation can bring me down in a hurry. I'm usually a very energetic, some say hyper, person who feels energized by debating or generally dealing with people. The other day I was arguing with a prosecutor over disposition of a minor case and actually started to stagger with exhaustion. I had trouble finding words and that really scared him. Poor guy made me go sit down until I could pull it together. Looks like I should avoid taking on any jury trials or anything requiring intense preparation.

Other than fatigue I'm feeling more pain and sensitivity in my teeth and gums, the side of my head feels stiffer, food is looking less attractive, and I've opened up a sore right above my earlobe which bleeds occasionally. Every day a technologist marks my head with either a green magic marker or a red magic marker (depending on the technologist) prior to treatment. The red has leeched into the gray hair surrounding the site, which when added to the green on my face gives me a slightly Christmasy look and opened up a lot of good natured ribbing.

Fourth Week of Radiation Done!

Posted By: CarlaFW
Date: Saturday, 1 September 2007, at 10:49 p.m.

Well, another week's gone by and other than even more fatigue I'm still feeling pretty darn good.

The skin on the left side of my face is taking on a very sunburned look and my ear feels increasingly as if it's blocked or full of ear wax or something. Though unpleasant these feelings are not terrible and I have been able to continue working, albeit with a reduced schedule and frequent little catnaps. I definitely require more rest.

The doctor and I met briefly on Tuesday, during which he told me he's very pleased with my progress thus far and anticipates the treatment concluding about two weeks from now. Happy news. Two days later his assistant stopped me and asked if I understood the doctor was talking about current electron treatments for the area next to my ear and not necessarily about the lymph nodes. D'oh! If he decides to go after the lymph nodes it'll be no more nice electrons and hello photons. As I told the techs, no one ever hears Captain Kirk telling Scottie to arm the electron torpedoes, and anything that can blow spaceships out of orbit, like photon torpedoes, just can't be good for your body. Didn't hear any disagreement there, although the girls did ask if I always think in popular cultural allusions. Um ... yes?

Anyway, I'm still able to sort of taste things and beer and wine have not lost their charm (hooray), thus allowing me to continue swilling at baseball games and Bar functions. And I can't begin to express my gratitude at being able to drink coffee in the morning. Have to be careful not to burn, but boy do I need the caffeine. The aggressive prophylactic treatment of my teeth also seems to be helping. I floss and brush several times a day and use fluoride treatments. Still no major complaints about them.

So that's it. More of the same, with no big surprises, and that's fine. One can get used to anything if one does it enough.

Fifth Week of Radiation Done - and Over?

Posted By: CarlaFW
Date: Friday, 7 September 2007, at 9:23 p.m.

Today I was told that my last electron treatment will be on Monday - just one more day. Then, after a rest of about a week to ten days we're going to move on a brief session of IMRT photon radiation - to take place between a week and a half and three weeks.

My ever helpful friends have suggested that we find a Star Trek costume for me so we can get in the mood for the "photon torpedoes". I can't see any downside. I suggested that I take the Lieutenant Uhura role, but these same friends say that I simply don't have Nichelle Nichols's legs and maybe I should stick to a Captain Kirk/Scottie scenario.

Overall, I cannot complain about the electron treatments. Despite periods of extreme exhaustion I'm able still to work and even go out with friends or to a ball game. Part of this is probably due to my natural high energy, but a lot is due to the fact that electron radiation is a much more superficial type which does not cut through everything in its path.

So, after five weeks I can report a sore ear, slightly impaired hearing which will probably resolve itself over time, pervasive fatigue, and a rather sunburned looking side of my face. I've lost my sideburn, the radiation leaving a smooth edge to the hair almost to my temple, which looks as if I went after it with a razor. My hair is shortish, but long enough to easily cover the missing little hank of hair.

All in all, not a bad experience.

Sixth Week After Radiation Started

Posted By: CarlaFW
Date: Friday, 14 September 2007, at 9:03 p.m.

I did my last electron radiation treatment on Monday. Nice to have a break from the festivities before I start on the IMRT ... now with more photons!

The staff warned me that I would continue to feel the effects of the treatment for days afterwards. I think I walked out of there expecting to be completely normal (to use the term loosely) by Friday. Instead, my skin continued to get flaky and irritated and I started to drag quite a bit by today. But come to think of it I've been working late and intensely, and my drama prone family has had more than the usual share of crises this week. The only thing for the flaking/itching is keep slathering on the Alra Therapy Lotion. Great stuff. It really does help. My doctor called me out of the blue today, told me that he does this each Friday with everyone who's completed a course of radiation, and asked how I am. He told me all sounds normal and is looking forward to seeing me next week for a review and the simulation for the IMRT. Since I spend most of my time listening to other people's complaints and dealing with their problems it was gratifying to have someone ask me how I am.

I used the extra time granted by my lack of a regular RT meeting to search the web for an appropriate picture of Captain Kirk and Scottie to present to the girls at Radiation Oncology in honor of the "photon torpedoes". The dialogue goes like this:

"Arm the photon torpedoes, Scottie."

"Cap'n, ah cannae do it. She's a menopausal woman, dangerously unstable. One wrong move and she's likely to blow."

"Never mind that, Mr. Scot. Give me those photon torpedoes."

Cue cheesy 60s Star Trek music.

Might as well have a little fun with this.

Send in the "CAT"

Posted By: CarlaFW
Date: Wednesday, 3 October 2007, at 7:44 p.m.

Well, it was off to the radiation oncologist today for evaluation and review. Fresh from a triumphal five week tour of electron world (Now, with more linear acceleration!), I am now preparing to embark on a three week course of photon therapy, which I like to refer to as breaking out the photon torpedoes.

Before we start it's necessary to get a "CAT" Scan tomorrow. Yes, yes, I know, it's actually a CT Scan. Boring! I'd much rather have it done by a cat. I can see it now (scene goes all misty into black and white):

"Okay Carla, we're going to do a 64-slice CAT Scan to map your head and neck. Here kitty, kitty, kitty ..."

"Mrrrowwwwrrr, pfst!"

"There you go, kitty. Come on over to Carla."

"Nice kitty, do your damage. We need 64 slices."

"Hey, are you sure this is safe? That cat looks angry ... no don't ... mreowwwrrrhhhrrowwww ... pfsssttt! Ow, for pete's sake, what are you doing?"

"Come on, kitty, just 4 more and we're done."

"Rowrr!"

"Ackkk, I'm bleeding!"

"All done, Carla. Don't you just love our brand new 64 slice CAT scan? It's the latest in medical technology."

"Hackk, spft, hackck ... "

Ooh, a hairball. These technical problems happen sometimes ..."

The "CAT" Would Have Been More Fun

Posted By: CarlaFW
Date: Friday, 5 October 2007, at 12:01 a.m.

Today I went for simulation in preparation for photon radiation starting next week. All in all I think my idea about using a "CAT" scan was more fun than today's adventure.

I was ushered to a back room, where once again all my idiot questions were answered fully and completely. This bunch is unstoppable.

A radiation tech, or maybe she's a dosimetrist, told me she was going to assist in making another mask for me. Ruh roh! Now, for those who've been following my adventures you know that I was actually fitted for a mask about two months ago, and then when I showed up for my electron treatments they just had me tilt my head, placed an ear shield and a bolus on my ear, and zapped away for five solid weeks. No mask, just a warm, electric sensation.

So I asked: "Why no mask before?" Turns out a mask can't be used in electron treatments because the poor little sensitive electrons just get absorbed right into the mask and lose their effectiveness. This makes them sound sort of wussie, albeit rather soft and cuddly.

Now the photon torpedoes have no such problem. They're a leaner, nastier form of RT; sort of like the kids in my old neighborhood growing up. Photons are gangsta to electrons' wannabes, so they'll go right through the mask and pretty much anything else in the way, impeded only by the MLCs. The way the dosimetrist explained it the MLCs are dozens of tiny lead leaves which can adjust and flutter to block and direct the photons, which allows them to do their work while avoiding damage to surrounding tissue.

Still awash in the glow of new-learned useless information I was directed to sit on a table next to the CT scanner. The doctor, the physicist, and dosimetrist all gathered around and started talking in tech speak and numbers at each other. Always at times like this the magic markers come out and before I know it there are multi-colored circles, slashes, and little exes on my face and neck. Everyone's got a favorite color it seems. After rendering me suitably ridiculous looking the team decided it was time to mask up. Mr. C., the physicist, cheerfully declared that they were going to make my neck hurt now. Hey, the man was being honest.

The table had a little plastic stand for my head. Apparently these stands are labeled "A", "B", and "C" depending on size. They tried the B, then the C, then the B, then finally the A. I felt like Goldilocks choosing a bed.

Everything was fine until they asked me to tilt my head back, then farther back, then pretty much all the way back while perched on the stand. Oy! I was handed a big ring to hold between my hands.

The ever-cheerful Mr. C approached with a large round yellow frame across which was stretched a hot, gauzy, waxy-looking membrane, like a thick piece of Saran wrap, and without further ado pressed it down around my face and locked it into the table.

This can be a startling, confining experience. The waxy stuff is very warm, but starts immediately to cool, and as it cools it hardens. You can breathe through it, and see through it, but as it dries you feel it adhering to your forehead and chin. In my case the tech speak kept right on going, with the dosimetrist and Mr. C marking pieces of masking tape and slapping them onto strategic parts of my mask. Occasionally the magic markers came out again.

Eventually all the scribbling and tech speak was done and the machine was turned on and I was sent into the scanner, then back out again. There seemed to be a lot of this in and out stuff, with the dosimetrist, Mr. C, and the doctor occasionally wandering back into the room to fuss over the mask and speak in anagrams and numbers some more.

At one point Mr. C started poking my chest, as if he was looking for my sternum. It turned out that my surgeon had what my radiation oncologist regarded as an obsession with my chest - not the good kind of obsession, mind you - but a concern that tumor cells may have migrated there. I was sent into the scanner yet again to take pictures almost to my waist. Then the dosimetrist tattooed two little marks on my clavicle, which she laughingly called the "vampire bite", and we were done.

By this time I'd been almost an hour with my neck locked into an unnaturally tilted position and things were getting uncomfortable. All you can do in such a position is stare upward, which in my case meant watching the two green laser lights on the ceiling, then the blinking red lights as I entered the scanner, then the whirring thing inside its frame inside the machine.

Finally the dosimetrist came out and unsnapped the mask from its base. By that time I was stiff as a board. The doctor explained that everything was clear and it was nice to hear there were no masses lurking in my lungs or shoulder. The area to be irradiated is about 15 centimeters, from the mastoid process down to the clavicle.

So that's it. The dosimetrist showed me all the pictures and the area to be treated. I told the doctor that I'm not claustrophobic, but after an experience like that was considering taking it up, and he laughed and replied that he has a lot of angry friends who insist on entering the machine feet first or even sedated.

I toddled off to work, which is where I discovered the criss-cross pattern of the mask still on my face, where it remained for a solid hour and a half before fading.

So, the long and short of it is that the mask can be annoying and confining and a little unnerving, but even an hour in the darn thing does no real harm, and for my treatments of course I will be in it at most for a couple of minutes. No big deal, but I still would have liked a cat in there with me.

Saturday, October 13, 2007
Radiation Update - Parotid Tumor Journal

Thank you to those who've expressed their concern about my situation. I feel fortunate in that my condition is not cancer, and I will not require chemotherapy, and that I live in an area where there is easy access to cutting edge modern medical treatment. For those who may have stumbled onto this site while looking for information about parotid tumors, you cannot do better than to look at the superb Patients' Forum on Parotid Tumors run by RoxanneM at this link.

Unfortunately, I am not yet done with treatment. I've been through five weeks of electron RT and am now embarking on about three weeks of photon treatment. During these past weeks I have been posting a journal of my experiences on the Patients' Forum, going by the screen name CarlaFW. I've reproduced the journal in its entirety, unedited and complete with minor errors, below. The biggest error is that I am not in IMRT radiation therapy, but straight-up photon treatment. The later entries tend to be more accurate than the early ones due to the information I've gathered during this period. Maybe by the end of this little episode I'll actually know what's going on. In the meantime, I would like to extend thanks to the Radiation Oncology staff of the Virginia Hospital Center. They are the best.


Arm the Photon Torpedoes, Mr. Scott

Posted By: CarlaFW
Date: Saturday, 13 October 2007, at 1:20 p.m.

Well, I've started my latest round of radiation, this time with photons. Except for the incredibly confining mask, the length of time spent getting zapped, the direction in which I'm being zapped, the multiple zaps, and the difficulty of lining up my uncooperative shoulder with my equally uncooperative neck, it's exactly like electron treatment.

When one hears that one is going to get two different types of treatment one assumes that there will be two different machines. However, now I'm back in the old room with my good buddy the Clinac21EX/23EX linear accelerator. It turns out that linear accelerators are used for multiple purposes, making them the Ronco kitchen tools of the radiation world. Darn things have more diversity than a New York street festival.

With nothing better to do I slipped into toddler mode this week and asked a lot of stupid technical questions. The main machine is called the gantry. That it rhymes with pantry makes it all the more kitcheny to my ears, and the fact that it strongly resembles a gigantic '70s era Sunbeam mixer doesn't help. The mixer head is referred to as the collimator, which sounds suspiciously like colander. The collimator is very versatile and has a number of grooves and locking mechanisms for the insertion of various implements to assist in the administration of the radiation. In my case there is a metal tray called an MLC wedge which slides and locks into place, and helps to shape and direct the beam.

On Tuesday I reported for what I assumed would be my first treatment, but it was actually another picture taking session. I got on the table, technically called a couch (a really hard, flat, narrow couch without any fluffy cat pillows, decorative afghans, or bouncy cushions), and the mask was strapped over my face. It is extremely snug, but does not hurt. With my head tilted pretty far back the edge of the mask butted up against the top of my throat, and with inhalation I felt the jugular pulsating against it. Ick. I found myself delaying taking a breath just to avoid the sensation. I was then elevated pretty high, and the couch slid under the collimator. I mumbled a request through my mask for a doughnut (mmm, doughnut!), which is the ring I hang onto with both hands so my arms don’t slip down my sides and ruin the setup. The doughnut is a wonderful invention, especially for those of us who may be a bit over-nourished.

My vision from the mask is somewhat obscured but good enough to see the flat metal of the collimator, and the rectangular hole through which I could see more metal layers of varying shapes, and a white light. In the ceiling there is a cross-shaped hole out of which comes a green laser light. For this session I could see my reflection from the glass covering the hole in the collimator, and saw reflected a green line which traced the line of my clavicle. The technician and dosimetrist fussed over me with a green magic marker and started the usual routine of speaking in jargon and numbers. The technician carefully drew a line (green ink this time) from the top of my throat through the tattoo marker and to the next tattoo marker, then traced the green light down my clavicle and then up to my shoulder, following the line of light from the rectangular opening above me. The result was an incomplete rectangle, with the top open. Then they inserted the MLC wedge and the light was bent by the presence of a series of ridges, like little steps, in effect creating a step-shaped shadow on my skin. This too was carefully traced and the blocked area colored in a little. It ended up looking like a diagram from a kid’s science fair project on how waves create sand dunes. Charming, especially after I couldn’t get the ink out completely, even with a shower the next morning.

Then commenced the picture taking. It seems to me we do a lot of this. At times I feel like a celebrity fashion victim what with the technician running into the room with her digital camera for another shot of the hospital gown-clad plump lady strapped to the couch, and then the x-rays from the gantry. They took a series of x-rays from the top, then rotated the gantry upside down and took more pictures from beneath me. I hadn’t noticed before, but the couch is actually just a big grid with a kind of plexiglass covering it.

After the session I asked a lot more stupid questions. It seems I am receiving 176 cGys (they used to be called rads, but are now called grays after a British physicist, and designated by Gy) on the top shot, and 117 cGy on the bottom shot. At my first treatment on Wednesday I went through the first zapping, then lay there perplexed and wondering if I should try to move, when the gantry suddenly rotated upside down and they administered the second dose. The first dose is always around 40 or 45 seconds by my count and the second is about 25 to 30 seconds. The doses are administered by 100 monitor units, or M.U.'s. As with the electron treatments the time varies for each dose based on environmental factors.

So far I’ve had three sessions. Setup is more complicated than it was for electron treatment. The mask has to be strapped on and my shoulder has to be lined up just so, and then the lights have to line up exactly before they commence. I’ve already noticed a nasty stiffening in my shoulder and will have to ask about possible physical therapy or exercises for the problem. After my third session on Friday I went off to court and while standing in a hallway felt a wave of fatigue rise from my ankles and swell over my head. My voice is starting to feel a little raspy, and I expect that I might have a sore throat by the end of next week. Given a choice I would say that even a free week at the beach inclusive of admission to the seafood buffet would not induce me to stay at Club Rad, but sometimes we have to do what we have to do. It’s not jail and it’s not permanent, so I’ll keep on trudging to the Radiation Oncology office every morning until they tell me to stop. It beats having yet another doggone surgery.

At any rate I can still work, and so I do, and last night a good friend took me to the National Italian American Foundation gathering in D.C. with a show by Neil Sedaka. My friend did the whole radiation thing for breast cancer, plus chemo, which I don’t have to have, so I’m still coming out ahead. We went and had a great time and met some charming Canadians and found out that Neil Sedaka is at least part Italian and in fact can sing and speak in Italian. Who knew? Life goes on.

Posted by Catzmaw at 9:08 PM 2 comments Links to this post

Labels: Electron Radiation, Parotid Tumor, Photon Radiation, Radiation Therapy

Radiation Cogitation

Posted By: CarlaFW
Date: Friday, 26 October 2007, at 9:34 p.m.

To everyone waiting with bated breath for last week's posting which never came, I'm sorry. You can breathe now. The fact is that I fired up the old computer all ready to type away, a copy of Moby Dick beside me AND a re-run of Star Trek, Next Generations on the telly for inspiration, and I just ran out of steam. Crashed. Too pooped to pop, I ended up lying on the couch (a real couch with bouncy cushions, the decorative afghan, etc., not that thing at radiation oncology some comedian named a "couch" and which is actually a hard narrow table not made for large middle-aged women with dicey backs and plump thighs). Lacking any cat-themed throw pillows I instead propped a real cat on my chest and a Jack Russell terrier across my hips. The cat lay there for hours, gazing into my face with disconcerting feline opaqueness and occasionally pricking me awake with a single, casual claw to the top of my sternum or sticking her bewhiskered nose into my open, lightly snoring mouth. Glad to know there are some things which can make me more uncomfortable than the mask.

Before proceeding I must congratulate Jodie for somehow managing to weave the mini-series "V" into a discussion of Hannibal Lector by way of offering a cogent explanation of why the mask makes us look like cannibalistic reptilian pseudo-aliens. Liver with fava beans! Sounds, um, not too good, but the man's a cannibal and there's no accounting for taste.

Now, as for the last seventeen days of photon goodness, anyone can get used to anything if it's reduced to a routine. It's just very tiring and a little unnerving.

I've spent the last few days pondering WHY it's unnerving. It's not the staff, the facility, or even the process itself. The staff is just wonderful. I couldn't say enough about how helpful and kind they've been. The facility is modern, well-lit, with good chairs and lots of reading material and water and strategically placed baskets of crackers. The process, too, is non-threatening and mundane, a routine during which a friendly technician usually opens a door and tells me to go on down the hall to the treatment room, where I am always greeted by one or more of the personnel, usually a technician and/or a nurse and/or a dosimetrist and one of their new interns. The interns are always young and enthusiastic; cute, but competent, who remind me of my own dear 21 year old daughter. An old hand, I stroll into the treatment room and wait for them to complete setup so I can lie down.

Setup changes from patient to patient depending upon the treatment ordered. If I enter the room after a breast cancer patient has been in there I'm likely to see two stirrups off to the side, and a little round stand for the patient's head. The stirrups are for the patient's arm, which must be placed out of her way while the breast is irradiated. This setup is of a piece, with that portion of the table being removable, stirrups and all, and another, flat portion of table laid down in its place. The setup for a head and neck patient like me consists of a rod containing little pegs placed in grooves on the table, upon which a sort of tray is dropped into place on the pegs, and which itself may have some pegs for placing in the table's holes, for stability. Near each corner of this tray are latches: round buttons with flat metal prongs on them which can be turned to hold in place the clear plastic headrest. The misnamed couch is in fact like a Lego pegboard on which many setups can be erected, or maybe it's just a big game of Battleship.

I lie on the couch and arch my head back a little for the mask, which is placed over my face and firmly strapped down. I can move my face inside of it a little bit for comfort, but comfort is a matter of perspective. To me, comfort means that I feel constricted, but not so constricted that I think I'm suffocating. Staring upward at the blue sky ceiling panels through the gauzy fuzziness of the mask I feel the couch slide silently under the collimator. Treatment rooms have these things - blue sky ceiling panels and walls with scenes of flowers and gardens - an effort to alleviate the claustrophobic sensation of a room without windows. Talking is impossible - probably not a bad thing - and I can only stare upward at the machine. I've memorized the innards of the collimator, trying to guess the depth of the hole through which the white light comes (maybe 18 inches?), and noticing the tell-tale wedge formation of large MLCs just below the light. Much of the structure looks like the inside of an SLR camera lens.

At some point during the treatments we decided to dispense with the hospital gown and instead treat me in my work clothes. Some mornings the shirt has to be taped down to reveal my clavicle and the little tattoo dot next to it. Considering the difficulty of lining up something as round and irregular as a neck and shoulder, the crew works very fast and efficiently. Reflected in the machine I sometimes see the green laser line tracing down my clavicle. Sometimes an ink dot enhances the underlying tattoo. Sometimes the green laser light isn't on, and I can see reflected the piece of tape, a line carefully marked down it, which courses down the left side of my mask. The reflections are obscured when someone slaps the MLC wedge into its slots on the collimator and I read the legend: "30 cm x 40 cm 15 degrees steel".

Happy with their work the techs walk out the door, a huge 12-inch thick door with a red radiation caution sign on the outside, and leave me alone on the other side of it. Sometimes I hear a "poomf" noise as the door softly closes. I have often wondered whether this sensation of being left alone is what is so disquieting, but think not. I've never minded being alone. As a child I used to hide in closets and under beds, avoiding parental scrutiny and reading voraciously by the light of my Girl Scout flashlight. Nope, solitude for me can be comfort.

Alone in the room there is nothing to do but wait, with an odd sense of anticipation, for the treatment to begin. No announcement precedes it, just silence and a sudden buzzing noise from the left which goes on for over forty seconds. The buzzing stops, and the collimator rotates to my left. Someone enters the room and removes the wedge, then leaves again. Another soft poomf and the collimator rotates all the way under me. Sometimes the green laser light is on and I watch two narrow lines of green chase each other across the ceiling, and then the bottom section of the machine is above me; a flat, gray mass with a piece of masking tape across it with "Do not rotate beyond this point" written on it. I wait, and another buzzing starts, this time for 30 seconds or less. One day last week the buzzing stopped after only a few seconds, and I lay there confused and wondering if I should move, until it started up again and completed the dosage. Somehow a switch had been accidentally hit.

A few days ago as I lay on the couch after a session I glanced up and noticed a surveillance camera in the corner. A technician told me the camera shows each patient in the room, and all that is necessary if I am ever in distress is to raise my arm and they will come running. This is good to know. Perhaps I will work up the nerve to start flashing gang signals or make little animal shapes one of these days.

On top of the treatments there are x-rays. Lots of x-rays. Maybe this is the source of the disquiet, the sensation that on top of the unnatural amount of radiation I receive each day there are additional rads coming through my x-rays.

Maybe the disquiet is related to physical reaction to the treatments. In the mornings I receive a treatment and sometimes upon getting up from the couch I feel a blocked sensation in my ear, or a coarse static. Sometimes I feel a delayed electric sensation swelling my throat or lips for hours afterwards, like an overdose of sun at the beach. My voice comes out croaky sometimes, sounding like the eternal teenage boy on The Simpsons. My gums hurt and my teeth are sensitive. My neck is red on the left side and I think of how appropriate it would be to have Gretchen Wilson singing Redneck Woman just once in the treatment room. I'm tired and my brain is foggy. How many times have I had to explain to people that if it is not in front of me I may not remember it? Or that I cannot quite recall things which normally would be at my fingertips? A natural chatterbox from whom words normally gush unimpeded and heedlessly, I suddenly find myself groping for words at times, reaching across the radiation-induced drought and stumbling over pebbles of thought as I grope for pools of my former loquacity.

So, perhaps the disquiet is this; the feeling after decades of being warned of the dangers of radiation, of being taught to "duck and cover" in the early sixties at my grade school, of living through the Cuban missile crisis at ground zero in the DC area, and through the no-nukes movement of the late seventies, that being on the wrong side of the danger sign on the blast door is abnormal. It's a cognitive disconnect to be on the wrong side of that door, in a room with false windows, and next to a machine which is giving me the equivalent of dozens, or maybe hundreds of x-rays every time I'm there, not just from the front but from the back, also.

Notwithstanding this disquiet, every day I report for treatment, and every day walk from the room unimpeded and generally unscathed but for the minor complaints put forth above. There is nothing here from which I will not recover. The disquiet is in the end like the monster under the bed, unsettling but not real. It is tolerable, and as I embark on the next week of treatment I understand that I will feel a bit worse before I feel better, but that this will be but an interesting topic of conversation at dinner one day, a set of experiences out of which I might weave a tale, its tone either somber or amusing or informational, but something which will be in the past. My future does not include this disquiet. All is well.

Posted by Catzmaw at 10:53 PM 0 comments Links to this post

Friday, October 26, 2007
Photon Freakout

Another couple of weeks have gone by and with them seventeen photon treatments; seemingly endless treatments. It's hard to remember what it was like not to report to the hospital every weekday. I'm there walking the hallways so much that not only have I found all the shortcuts to the cafeteria, but my presence in areas usually traversed only by maintenance and other staff goes unremarked. A familiar face, I blend into the surroundings. After including x-rays over the last few days I had hoped to be told that today was the last treatment. It was not to be so. My reassessment is on November 2nd.

Anyway, the latest installment of my Parotid Tumor Patients' Forum Journal is done, so I'm posting it for whatever it's worth to whomever might wander by. Here it is:

Monday, November 05, 2007
Finally Free of Photons - Fabulous

Here's my last post from the Parotid Tumor Patients' Forum. Of all the things I've lost it's my mind I miss the most, and look forward to renewing its acquaintance after a few days or weeks off the radiation. Let's hope it missed me and wants to come home.

Finally Free of Photons - Fabulous!

Posted By: CarlaFW
Date: Monday, 5 November 2007, at 1:01 p.m.

It finally happened. The day I thought would never come arrived and on Friday I issued forth from Radiation Oncology on a couple of hugs, calls of congratulations, and clutching my freakish souvenir - the much-maligned "autocast" - my mask. It still bears tape with little "x-marks the spot" inkings and one long and carefully drawn "V" along the lower left quadrant (with a tip of the lizard skin to Jodie).

My emotions are mixed. For three months the Radiation Oncology unit has been a regular part of my daily schedule. I've gotten to know the wonderful women who are the backbone of the unit; have listened to the gentle teasing of its outnumbered male, Mr. C; have enjoyed my conversations with Dr. L over everything ranging from my treatment plan to mutual acquaintances to the latest depredations of the Demon Spawn, also known as Arlington County's Parking Enforcement.

For three months I've plopped into the unit's comfortable chairs, chatting with patient and staff alike, phasing through as all radiation patients do since treatments never exceed a few weeks or months at most, and quite often may be as brief as one or two visits.

What can I say about this strange science? Every day at RT is a voyage on the SS Paradox, a sophisticated balance of hair of the dog with what bit you and destroying the village to save the village. Now my ship has come in and I can resume my life, wait for the infernal itching on my neck to go down, and find other things to occupy my mornings.

I took the mask to work and horrified all the claustrophobes by modeling it with commentary. My children were astonished when they saw the thing. I think they thought I was got up in something like a hockey mask every day.

My appearance at work on Saturday turned into a little bit of a reality check as I was there for only two hours before being overcome with exhaustion and driving home to spend the rest of the afternoon and evening on the couch. The cat took up her position on my chest and the dog his position on my legs, and my 16 year old and I watched "Jaws" as I told him of the summer of my own 16th year when the movie was released and my sisters refused to go swimming with our family off the shores of Massachusetts. Normalcy is nice.

Today I went to work and felt a little less fatigued, but forgot the name of the restaurant up the street when suggesting to a colleague that we go there for lunch, and forgot a copy of the code section I needed for court today, and forgot the name of the client on my walk from the office to the court. Radiation does that, I think. Its effects ripple like the pond into which the rock has been dropped, and it will take a while for the waters to recede and for the silt to settle and the depths to clear. I'll just have to be patient.

So that's it. My little adventure is done. It's been almost a year since I went for the physical that set me on this course. Let's see what 2008 brings.

Posted by Catzmaw at 2:24 PM 0 comments Links to this post