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When the professional gets personal: illness and identity

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Those of you who read my blog, “Head Nurse,” will know that this is the six-month anniversary of my being diagnosed with oral cancer. Those of you who don’t read “HN” (and I pity the fools!) know it now.

A quick recap: On September 10, 2010, a routine visit to the dentist turned horrible when my hygienist said, “How long have you had that lump on your palate?” Five days later the pathology report came back, and the oral surgeon I’d seen called me at home on a Friday afternoon after five to tell me: It was malignant. I had something I’d never heard of, called polymorphous low-grade adenocarcinoma (PLGA), and I would have to have some fairly major surgery and lose some in-head real estate, then have radiation, to get rid of it.

I’ll fast-forward through the next oral surgery appointment and the one after that to the meeting I had with the otorhinolaryngologist who would be taking chunks out of the roof of my mouth.
(A digression: I work at a hospital that specializes in everything from the collarbone up, pretty much. Even so, PLGA is a nearly unknown thing, having only been differentiated from more serious carcinomas in the late 1980s. The guy who did my surgery, Dr. Crane, was one of the Bright Young Things who did early research into PLGA. Even now, it’s rare enough, with only 600 or so cases a year, that nobody’s even sure what causes it or even if it’s something exclusive to women. It’s a stub on Wikipedia. Do I really need to say more?)

I’d seen enough radical neck dissections in the CCU that I was really and truly frightened. I’d seen patients with head-and-neck radiation who later bled out because their carotid arteries had given way. I knew that radiation to the side of my head would have to be wide-scatter, and would likely result in the loss of teeth and the use of my right parotid salivary gland. Dr. Crane was reassuring, telling me that I wouldn’t need a radical neck; instead, I would have a total soft palatectomy and a partial hard palatectomy. “I’ll have to make a damn big hole in your head,” he said.

Oh.

Fast-forward through meetings with a prosthodontist (Dr. Elf) and prep for surgery and CT scans and MRIs and a PET scan (yay Valium!) and a hundred other pressing things that I had to do prior to surgery, and fast-forward through three weeks of recovery when I was stoned out of my gourd on pain meds, and fast-forward another two weeks until I got the news from the tumor board, via Dr. Crane’s office: no radiation.

Dr. Crane had gotten a clear centimeter-and-a-half margin on all sides of the tumor, and all I’d had to sacrifice was my palate, my oropharynx, a tooth and my peace of mind. I will not lie: I hit my knees at the news. I would not be sacrificing my salivary glands or my hair or anything else. It was over. Wide surgical excision is considered, in these cases, to be a complete cure.

Yet I am a cancer patient. Recurrences with this type of tumor generally happen after the five- to seven-year mark. I’ll wonder, every time I open my mouth for the dentist, what he might find. I’ll talk intelligibly only with a plastic plate in my mouth from here on out. I may be a survivor of the disease, but the price exacted for survival is becoming a patient of other specialties for the rest of my life. (Palatal prosthetics are as rare as hen’s teeth at Wal-Mart; I need to keep seeing Dr. Elf.)

Let me tell you: Nothing changes your view of being a patient as much as being a patient. I learned how scary it can be to hit a call bell and have nobody come; I learned just how frustrating it can be not to be able to make yourself understood (post-surgery, I sounded like Mushmouth from Fat Albert). I learned about pain, and about being really freaking tired all the time, and most of all about being scared.

And yet I had it really, really easy. Compared with a trach, compared with what it’s like to go through radiation, compared to feeding tubes and laryngectomy, I had it easy-peasy.

Every few days I get called to start a particularly difficult IV on somebody who has JP drains coming out of his or her neck, and a big shark-bite incision on the forearm where the ENTs took a flap to reconstruct a tongue. I can’t say, “I made it; you will too” because they have so much more to go through than I did. I can, though, give them some recognition; say, “There’s a great prosthodontist I use” or “Have you heard about the Oral Cancer Foundation’s support forums?” I am a patient and not a patient at the same time. I can and can’t relate, simultaneously. Putting myself on a par with the people I see every day would be ridiculous; those folks are the heroes. Maybe, though, I can relate just a little bit.

It’s weird, having had oral cancer. There are only about 40,000 people diagnosed with OC every year, although that number is growing, thanks to the prevalence of human papilloma virus and its carcinogenic strains. It’s even weirder having had an oral cancer that generally hits women in their 70s. It’s lonely. It’s scary. There isn’t anybody to answer questions about recurrence or whether this type of cancer predisposes me to another type, because nobody knows. In one sense, I’m a success story; in another, I’m a pioneer in a country nobody wants to move to.

At least there are a few things I can do: I can answer call bells, even if they’re not my call bells, because I remember what it was like that one time that nobody came. I can advocate for better pain control in a more dig-my-heels-in manner, because I know what it’s like to hurt. I can reassure the 30-year-old guy with that weird upper-jaw cancer that nobody’s going to notice, eventually, that he talks funny, because eventually he won’t talk funny. I can sit quietly with the newly diagnosed woman in her 50s and remember what it was like to plan for every eventuality in about 30 seconds. I can pray, and finally mean it.

Maybe someday I’ll meet another patient like me and be able to answer all of her questions. Until then, I have to use this experience the best way I can: by making things better for other people. The primary way I do that is by recognizing other people with damn big holes in their heads as people first, and patients second.

It changes you, having had something like this happen. Six months on, I’m only just beginning to get my head around the idea that I might actually be okay. I hope I never take it for granted that I am.

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One Response to When the professional gets personal: illness and identity

  1. therealcie LPN

    Jo, first of all I’m glad you’re a survivor! Second, I am a horrible patient in spite of being a nurse because I am scared to death of medical procedures being done on me. I had several bad experiences in childhood and tend to avoid everything but the Yearly Blood Draw. Anything invasive scares me right the hell off. I have difficult veins and anything but a basic blood draw is hellish. Yeesh, I feel faint just talking about it! They’d have to sedate the hell out of me.
    Thank you for sharing your story. I hope you remain cancer free!

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