This is a different kind of adventure. I have included post-surgery pictures, just so you are aware. And this is a Very. Long. Post. My family all think this first photo looks like a mug shot :) This journey actually began in late 2002. I began noticing a pea-sized lump in front of my left ear when I clenched my teeth. When it didn't go away, I asked my dentist about it during a regular appointment. He suggested I see an Ear Nose Throat doctor. In April of 2003, the ENT doctor did a fine needle biopsy.* The pathology results came back as 'normal salivary cells,' so this doctor told me it was a cyst, nothing to worry about for now. If it grew, I should have it looked at again.
At least five years passed in which I didn't notice any change. But one day I was surprised to find that the cyst DID seem larger. I can't even remember if it grew gradually over time or if it grew suddenly, but by the end of 2009, it was big (for something on the side of one's face.) In this picture, you can see the 'swelling' on my left cheek, in front and below the ear (right side of picture.) It may not look like much to you, but... As a little side note: During 2009 I had also noticed a 'hard' growth almost on, but above the outer edge of my left eyebrow. When I had my regular physical on April 21, 2010, I mentioned this to my doctor, noting the long ago biopsy that had identified a cyst. She said it should probably come out and referred me to a plastic surgeon, since we were talking about my face. I also asked about the bump above my eyebrow and she referred me for x-rays. I had the x-rays of my forehead on April 28th. I had so many things going on that I didn't get in to see the plastic surgeon until May 27th and here is how that appointment went: The surgeon came into the room, looked at me and said, "Oh my gosh! That is HUGE!" I was so taken aback, I didn't know what to think. He asked me how long it had been there.... kind of awkward saying 'Seven years,' and I gave him the brief history. He was palpating and probing and measuring during this time. After I said that the ENT doc had said not to worry about it unless it grew, the surgeon sighed and said he hated it when doctors said that. Then he told me that, if I had come in when it was the size of a pea, it most likely could have been removed right there in the office - easy. But because of its size, the propensity for the face to bleed, and its location near the main branch of facial nerves, it would have to be removed surgically, under anesthesia.** I have to admit that I became dumb in that moment. The news was so surprising - and a little upsetting - that I couldn't think. Well, because of some other events that were coming up, we set everything in motion to schedule surgery for July 6th. It wasn't until I was driving home that I thought about the thing on my eyebrow. So I called the surgeon's office when I arrived home and talked to his assistant, explained about the hard bump on my eyebrow, and wondered about having it removed at the same time. She asked me to have the x-rays sent to their office. A week later they called me after reviewing the x-rays and said the surgeon wanted me to just pop into the office so he could take a quick look, because the x-ray findings were confusing. I went in on June 7th. After a quick examination, the surgeon said it was a simple bone growth, the official name escaping me now. And, yes, he could remove that at the same time if I wanted. I definitely wanted it removed, as I could just imagine growing a horn..... And one surgery sounded so much better than two. We went on vacation and the day after returning home I went in for surgery, my first in 20 years. Check in time: 11 am. Surgery time: noon. I was nervous. My surgical nurse came in to meet me. The anesthesiologist came in to talk to me and I found out I would not be intubated. That was a happy thought. My surgeon came in to see me and draw on me with blue marker. A nurse came in and said there was a delay - and then again, a delay. But I was finally rolled into the OR just after 1PM. I think everyone in the OR was male, except me, and that struck me kind of funny. Things happened pretty fast with the prep. I realized Dave Matthews was playing - I love Dave Matthews :) Once the anesthesiologist got the IV going, it was pretty much seconds before I felt a wave of vertigo and then an oxygen mask was placed over my face and next thing I knew, some one was talking to me. Through the fog of anesthesia and other meds, I'm sure, my surgeon was speaking to me in recovery, saying that there had been a surprise. Instead of a cyst they had found a parotid tumor. A frozen section done right there said benign, but because of the possibility of a malignancy, he hadn't removed the bone growth - not wanting to cut into and open anything else up. I felt lousy! But, since I had told the anesthesiologist that I had always gotten sick before, he had given me something to prevent that. Thank heaven. I gradually grew more alert and finally was released to go home. Just going outside to the car seemed to revive me a bit. The surgery had taken one and one half hours. The surgeon had said that I could probably return to work and my normal activities as soon as the next day. Ha! But I found myself easily fatigued and took 2 hour naps each day for about a week. That was probably my reaction to the anesthesia.
I had very little pain, only using the pain medication that first night and then late the following day. I used ibuprofen a little after that. My smile was not 100% - something no one else admitted to noticing, but that improved over a couple of weeks. My daughter-in-law sent me a link to a medical journal page on parotid masses, which was informative and alternately comforting and scary. I saw the surgeon 6 days post surgery. The important
information was that the tumor was indeed benign. It was a parotid tumor - an adenoma, or a tumor in the parotid gland, the largest of the salivary glands. The bad news was that the margins of the tumor were not clear, meaning the tumor existed up to the line drawn and therefore, all the tumor had not been removed. My surgeon said I needed to have a parotidectomy (removal of the parotid gland.) I was surprised (again.) Wasn't the tumor benign? Yes. Couldn't I wait and see if it came back and THEN have the parotidectomy. A hesitant 'yes.' It was my decision, after all. I was relieved and said I definitely wanted to wait. The tape remained on my face for 3 weeks. When I finally was able to remove the tape, I expected to see a red gash down my cheek. Nope. It was a line, but not overly noticeable. I had the irrational fear that the incision would burst open for a couple of days. I completely forgot to take a picture....
I found myself unexpectedly preoccupied with the thought of the possible surgery. A parotidectomy is a big surgery with high risk of facial nerve damage. Every night for about 3 weeks I would cry for awhile before falling asleep. It was driving me crazy, as I am not usually one to worry about things that might or might not happen. I decided to try 'letting' myself worry for a day and see if that would be the end of it. Nope. I finally talked to my therapist about it and that seemed to relieve some of the worry. And I decided that it would be good to do any research and information gathering now and be ready if the day arrived that I would indeed have the surgery. So I started doing a little research. My sister-in-law works at Huntsman Cancer Institute. In late September she spoke to one of their head/neck surgeons about me. He was adamant that I should NOT wait to have the parotidectomy, because, a) it is not uncommon for benign parotid tumors to become malignant and b) since the tumor had been cut into, the possibility of tumor spread through the body was greatly increased. He also said a plastic surgeon was a bad choice for this surgery. I was struck dumb yet again. I started exploring having one of the Huntsman surgeons granted non-par status with my insurance so that I could have the surgery there. I checked surgeons listed with my insurance - only 4 listed. Two were with Huntsman, but not two that I would choose to see. It didn't matter; they were only covered by my insurance for pediatric surgery. One of the 4 surgeons did not do parotidectomies. That left one. So frustrating. I called my surgeon's office and talked with his assistant, explaining how happy I had been with the surgeon's care, but that I had been told to seek a different kind of surgeon. She asked who I was considering, I gave the name, she said she really liked him. Talking to my boss about what was going on, I discovered that the surgeon in question had performed his wife's surgery the year before and they had been very happy with him. So I called and made an appointment and sent a release to have my records sent to him. But I was thinking - the boss's wife had had surgery on her back, so this was a general surgeon, not a head or neck specialist. At choir the next night, it occurred to me that a fellow choir member was a surgical nurse with a lot of experience. So I stopped her after rehearsal and asked her questions. She was guarded about the surgeon I was considering and then said absolutely not to use him for a parotidectomy; if it was an appendectomy or gall bladder surgery, sure, use him, but not for the face. She gave the name of someone else - not on my insurance, of course. I then told her I had been happy with my plastic surgeon and when I said his name, she just kind of lit up and said, 'Go back to him! He is wonderful! He is not just a plastic surgeon, but does cranial/facial reconstruction.' Well, can you understand the relief I felt? (She was also concerned about speaking the way she had about surgeons.....could be bad for her job.... but I am so grateful she spoke up!) I was back in my surgeon's office on October 7th. When the assistant saw me, she came out smiling and said how surprised she had been to see my name on the schedule that morning. I told her I felt like an idiot. She took me back to a room and asked to hear my story. The surgeon came in and did the little pre-op exam they do - is your heart beating and all :) He said we should have some imaging done to see the extent of the tumor and then set the surgery date. He explained the surgery in more detail; the fact that the main branch of facial nerves runs right through the parotid gland and they have to be handled and kind of 'stretched' to remove the gland. By this time I was ready to be done with the whole thing. And I had a number of choir concerts coming in November and December that I hoped to be up and running for, so I was anxious to get everything going. I did ask, knowing the answer ahead, about having the bone growth removed at the same time. No go - long surgery ahead, so not a good time to add something else on. They were able to get an MRI set for the next day - yippee! My very first MRI. The technician had a little bit of a hard time starting the IV for the contrast. Everyone wants to know if you are claustrophobic - not that I know of. I got little earplugs like I use when Don snores. I had a big scanning apparatus that came down on my chest like a necklace and was 'packed' into the 'head holder.' As the bed slid into the machine, I was a little stunned by just how close it was in there and had to do some hymn-singing in my head to calm down for a minute! That initial anxiety passed and I was fine. The thumping and banging with the changing rhythms was interesting. They scanned for about 20 minutes, then slid me out with many a command to NOT MOVE my head - as if I could! - the contrast was injected and I was slid back in for another 15 minutes of scanning. I believe I dosed off for a few seconds:) The MRI showed the tumor to be confined to the upper layer of the parotid gland, meaning I would have a superficial parotidectomy, which is a little better than having the complete thing and a little less risk to the nerves, but not much less. They said they would try to schedule surgery for November 2nd. What?! That was too far out! Couldn't we do it sooner? She said we could try for October 19th, but she didn't know if the insurance would have everything ready in time for that and that the 2nd was the next time available. Please, please try for the 19th. And it all came together for that day. I went to my chiropractor on the 13th to get some relief from the tension I was carrying. Then I got a 90 minute massage on the 16th. Great ways to prepare for surgery :) I cleaned all three house bathrooms Monday night. I was to be at the hospital at 6:30am Tuesday morning. Same routine, but I was a little calmer this time. After all the worry and stress, all the praying, I had been granted some peace and a feeling that all would be fine. My surgical nurse came in and it was the same nurse from July! He didn't remember me, of course, but I remembered him. The anesthesiologist came in - Yes, I would be intubated this time. My surgeon came in and drew on me again :) I was taken to surgery right at 7:30am. I thought things happened fast last time! As I was wheeled into the OR, some classic rock was playing and someone commented that the surgeon was the DJ for the day. They asked what I liked - I said 'just not country' - they said there would be no country :) I should have said, whatever makes you work best! Anyway, transfer onto the operating table, IV in and I was out. I didn't wake, that I recall, in recovery. The surgery took four hours. While it was considered a same-day surgery, I was on extended observation, so was taken to a room on the surgical floor. I couldn't keep my eyes open that day. I was on morphine. Crazy as it sounds, I had been sort of looking forward to staying in the hospital! What was I thinking? I was on clear liquids, so didn't get to order off the nice menus they have these days. I barely slept, strangely. I would feel that I had just dozed off when someone would come to check on me. The nurses and aides were all very nice. One in particular was superb.
I came home with my Jacob Marley look. Pain was not horrible, but I did use the pain meds for the first 3 days. I saw the surgeon on Thursday. He removed the Jacob Marley bandage. He commented on the weakness of my facial nerves. I could close my eye, but it wasn't blinking properly. The left side of my face barely moved. But he reassured me and Don that the nerves were all working; it would just take time to heal and recover. I was and am numb across my check and ear and part of my throat. Most of that feeling should return over the next year.
Then he said, ' Oh, I forgot. I usually tell patients to bring a hat' :) Well, I was wearing a hoody, so that worked okay. I have no idea how my hair got like this, but it was a rat's nest after surgery. I was allowed to shower, which I did immediately when I got home.
So I passed from the Jacob Marley look to what I lovingly referred to as my Borg look with the drainage tube. I saw my surgeon again on the 25th and was able to have the tube removed. That was a strange experience - shudder.... and a big relief to have it gone.
The incision is fairly impressive - I should say incisions: curling over and under the front of the ear and then the big incision behind the ear down into the neck. And thus began a little trial of of my faith. Remember how I said I had felt the reassurance in prayer that all would be fine? Well, I have had to remember that Heavenly Father's definition of 'fine' is not necessarily my definition of 'fine.' I have had trouble with my eyes; they don't seem to be working together very well. I have had a great deal of trouble reading or watching TV, leisure activities that I was looking forward to during my recovery. Every day feels like a week (well, maybe just several days :) I have to remind myself that very little time has passed and to allow for healing to occur. Every day for the first 2 weeks I would have a small crisis of faith that I had to work through. A short bout of tears and sorrow. Two and a half weeks out and I am doing better. The emotions are more stable. It feels like its been a month or longer. I have been trying to find the line between doing too much and
doing enough to move recovery along. I attended a 4 hour choir rehearsal on October 31st - that was too much. I have gone into work a couple of times for just an hour and a half each time. Don or my daughter Becky drives me everywhere - doctor appointments, short trips to the store, the post office, etc. I don't trust my eyes enough to drive, plus my neck is rather tight and so I don't turn my head very quickly. The pain is minimal and I usually take ibuprofen when I go to bed. The surface nerves are regenerating, or whatever, a little now, and that is sometimes unpleasant. I can feel the top of my ear, though, so that is progress.
My smile at one week. (All smile pictures are me smiling as hard as I can.) I do little 'exercises' recommended by my neighbor: I stretch my mouth as wide open as I can, I pucker as tightly as I can, I smile as wide as I can. I also open my eyes wide and squeeze shut as tight as I can, concentrating on the left eye. Ten reps at a time a couple of times a day. Is it helping? Who knows. It isn't hurting things - other than the discomfort of the exercise - and it makes me feel as if I am doing something productive to aid recovery.
Smile at two weeks.
I have been researching acupuncture. I even called an acupuncturist and asked questions. If it were covered by insurance, I would do it in a heartbeat. But it is not. So I am trying to be patient. It is difficult to eat anything that requires me to open my mouth very wide, but I keep working on it. My strangest 'pain' is my inner ear; if i blow my nose, there is a sharp pain in my ear.... I will post more progress pictures.
*Fine needle biopsy is a valid diagnostic tool, but in this case, the target was small and not fixed and no imagery was used for guidance, so the needle missed it each time.
**My story and that of a few other people I know has given me a kind of 'soapbox.' If you have something on or in your body that isn't normal, see a doctor. If the doctor tells you 'it is nothing' and/or 'don't worry about it,' ASK MORE QUESTIONS. Will it get bigger? Could it affect anything else? If the doctor can not say absolutely NO, then strongly consider having it taken care of while it is still small!
