I’ve seen a martial arts move where the martial artist drops to the floor, swings his legs against the back of the opponent’s heels, and the unsuspecting opponent topples to the floor, surprised, baffled, aching.
That’s the metaphor that works best for me with regard to having a parotidectomy, or what ended up technically being “excision of a parotid mass.” The morning after surgery’s jubilation at being alive and being able to smile, say, “Eeeee,” and raise my eyebrows was followed by getting hit hard, then harder. I was floored.
Before the surgery, I Googled far and wide, found Poked and Parotid - Journal of My Parotid Tumor by Andy Little the most valuable chronicle of the general nature of what would happen before, during, and after a parotidectomy, and felt well-prepared.
For those who might find this post when searching for answers of their own about parotid surgery, here are some insights, observations and advice I would share with myself knowing now what I didn’t know then. (And as of February 2010, when Andy Little writes, "Please feel free to write any time," he means it. I know, because I wrote him. And, with great kindness and comfort, he wrote back. Advice to self: Write Andy.)
Observation: Pre-surgery fasting became tolerable after 5 hours, but I had to quit working because I couldn’t concentrate any more. After that point, seeing food or thinking of food didn’t make me want to eat it because I had little energy for appetite. Swishing water in my mouth every hour or so, then spitting it out, helped with the thirst, as did keeping my lips moist with cherry-flavored Chapstick, although alternating with petroleum jelly as lip gloss worked well, too. By the time I went into surgery, I had been without food or water for 10 hours. 8 hours was required.
Insight: Andy’s parotidectomy was in 2003. Whether by local norm or by insurance requirements, what was once a surgery which resulted in hospitalization was for me in 2010 out-patient. I got into my sister’s car, having had no food or water for 12+ hours except for a few juice cartons in the last half hour, about an hour after surgery, with a multi-inch, multi-stitched incision in my face and a drain in my neck leading to an open hole leaking saliva and blood. I profoundly underestimated the shock and impact of this event on my system.
Advice to self: Stock up on nutritious soft food for many meals for many days. As warned, the discomfort in my face precluded opening my jaw wide or chewing, so soft food in small amounts was all I could tolerate. Although I love Campbell’s chicken and rice soup, one can slowly eaten in small portions over many hours left me as hungry when I finished as I started. I ended up subsisting on French fries and vanilla ice cream which provided comforting bulk, but not tissue-rebuilding nutrition. I wish I had had two six-packs - one of Ensure and one of V-8.
Advice to self: Don’t stay alone on the second and third days. I train for sprint triathlons and write an advice column. I appear physically and mentally fit. We all thought I would be fine alone. Alone, I lost all my strength and resilience of body, heart and mind. I spilled like milk and am still mopping up. Having a person present in the house, even a hired nurse, would have served as a container.
Insight: A hard cry eases the spirit, strains facial stitches, and requires an extra pain pill afterwards. A thoughtful cost-to-benefit analysis would probably have been in order but I wasn’t thinking at the time.
Advice to self: Follow directions. A nurse friend told me that most people make the mistake of taking pain meds once they feel pain, rather than starting the meds before the pain starts. Heeding her advice, I took the pain meds prescribed by my physician ASAP and experienced that state that some find of addictive relief - separation of self from pain. I may have had pain but I didn’t know it enough to suffer from it. I thought I was starting to feel fine, so I skipped a dose. Two words: Stupid hubris. I returned to taking the meds as prescribed but never regained the full relief I had had while doing what I was told.
Insight: Psychological stuff comes up. Plenty came up before the surgery, and every moment of working through it strengthened me. About this new stuff, some I’m working through, some calls for a struggle for which I don’t have much energy.
Given Andy’s thorough record of parotid surgery, I only wrote one journal entry, 48 hours after surgery. While it explains more of the details of my own case and story, it’s definitely written from the spilled state of despair.
When I was searching far and wide for information on paroditectomy, I wanted to see. If you want to see, here's what I've got.
Pre-Parotidectomy Images
Post-Parotid Surgery with Bandages (The last photo is a self-portrait from the third day. Evidence for "Don't stay home alone.")
If you have a weak stomach, please do not click: Parotidectomy Incision with Drain and without Drain
Parotid Surgery Incision (Less graphic and drain opening is covered by a bandage.)
Parotid Surgery Scar (begun 3/5/10 with photographs of the progression of the scar's appearance)
Parotid Surgery Scar after six months (added 8/22/10)
Parotid Surgery Scar after one year (added 3/28/11)
Here is what I wrote:
Scar - 2/4/10
Did It Just Begin - 2/7/10
Results of Longitudinal Research Studies - 2/12/10
Parotidectomy - Then and Now - 2/15/10
Journal Entry - 2/17/10
Andy Little kindly gave me permission to write about finding his site from both personal and business points of view:
A Google Real-Time Search Story - LeBron James Had a Parotidectomy, Too - 2/11/10
Social Media Works to Resurrect Static, Legacy Sites from Internet Obscurity - 2/14/10
Surgery was late Monday afternoon; this is Friday morning. I assume I’ll have more insights. That's it for now. I'm ready to move on. I'm tired.
The hardest part is the altered state of the feeling in my face. It’s supposed to be short-term, back to normal in under a year. Before surgery, I very carefully placed the right side of my face against my husband’s whiskered chin, against my cat’s soft side, against his cat’s tough little head. I can’t feel them anymore.
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Update 3/5/10: I added these pictures, Parotid Surgery Scar, and am continuing to move on.
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Update 4/10/10: For 5 weeks, 6 days, and 23 hours, I felt as if I had a throbbing, aching hard-boiled egg protruding from beneath my ear, sewed to bursting just under the skin. After showers, the gathered place at the top of the wound stung as if it were still open. During the fifth week, so distressed and confused by the continued pain and the increased swelling and increasing hardness of the wound, I went to the after-hours, wait-in-line care facility. The physician was satisfied with the wound's appearance - no heat, no redness, no red lines, no indication of infection. He could not explain the pain. Still so concerned and my surgeon out of town, his partner saw me as the last patient on Monday, March 29, exactly six weeks from the day of the surgery.
My surgeon's partner was very reassuring and informed me that neck surgery is difficult and tricky and, for some, the wound can swell and harden. I fell in the latter category. He encouraged me to massage the wound. I rubbed it gently. "Like this?" I asked. "No," he said, "like this," and it felt as if he pulled the "egg" out from the side of my neck and rubbed it briskly between his fingers.
I massaged the wound for maybe two days or so, then thought about it rarely. Six weeks is considered the magic number for recovery from surgery and, for me, it took every day of six weeks for me not to have the pain and size of the wound a constant presence.
I received a very kind email out of the blue from someone who had had the surgery, who sent me a picture of their beautifully healed scar, who shared that they, too, had had an inordinately, surprisingly difficult time with the surgery. They sent the picture to assure me that it did get better and added, "Hang in there."
This post is long gone and buried in this blog so traffic to it comes primarily from people seeking information about, and solace for, their own parotid surgeries. So to you, my fellow parotid surgery "experiencers," I share what was true for me: 1) I thought I was alone and I am not. 2) While I appreciate that Tolstoy was a man but captured a woman's experience in Anna Karenina and I think others can empathize with those who've have parotid surgery, I think it has its quirks that only someone else who's been there can truly understand. 3) It took me a full six weeks to be released from strong and constant pain. The pain is occasional and annoying now, not ever-present. I feel like I have my life back.