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I have survived over 40 years of ill health. Even so I have learned to live a life of chronic patienthood where I am not dominated by illness. I have managed to focus on goals that have nothing to do with illness. Living life for me is learning to surf above the uneven terrain of my health.

Brian Nelson with his wife Diane before cancer changed his appearance.

Today, Mr. Nelson copes with extensive swelling in his face — a side effect of head and neck cancer treatment.

My health history is so involved I have created a Google document to keep track of it. I’ve had three kidney transplants, a pancreas transplant, 27 years of Type 1 diabetes, and four-plus years of metastasizing cancer. I’ve broken my leg, elbow, wrist, both feet, hands, skull and ribs (yes, I might be accident prone from time to time). Plus, I’ve coped with all the secondary illnesses that waltz along with these problems, including osteoporosis, gastroparesis, cataracts, gallbladder failure, impacted bowel and chronic bleeding.

Today, my most obvious issue, a side effect of treatment for head and neck cancer, is chronic facial swelling, also known as moon face. The removal of several lymph nodes from my neck and subsequent radiation treatments have rendered my lymphatic system unable to drain fluids from my head. I get up each morning and remind myself that I’m going to be swollen, tired and nauseous. So if I get something done, like epoxy the hatches of the kayak I’m building, it’s a great day. Or if I get through all my (liquid) food, it’s a great day. Or if one of our cats comes up to say hello, rubs itself on my leg and settles down for a nap near me … yep: great day!

The changes in my appearance as a result of my cancer treatment can be difficult for other people to understand. Last week, the cable service technician arrived at our door. He wasn’t the most charming of people. When Diane, my wife, opened the front door, he barked: “You don’t have dogs?” She reassured him we didn’t and he entered, only to be confronted by me, a stooped, swollen-headed man who breathed through a hole in his neck and was dressed like a samurai on holiday.

To further his unease, I started talking to him – apologizing for my terrible diction and unintelligible voice (an unfortunate and unintended result of my cancer). When he responded, “Why doesn’t she interpret?” I naturally started to don my “kill the technician” armor, preparing for a loud but unintelligible assault on the jerk.

Diane realized that I was about to sink our chances of ever again receiving the BBC America channel and hastily cautioned me that “now wasn’t the time.” I disagreed, and by head nods and hand gestures we commenced to argue.

Luckily I lost the argument. Diane talked with the tech, listening to his fear of contagion and fear of my spitting on him, and correcting him about my medical condition and my ability to spit. The contrite tech then confessed that two of his close relatives had died from cancer and apologized to both of us. I accepted his apology instead of lopping off his head, and he redoubled his efforts at perfecting our service, going above and beyond.

How does one deal with someone whose appearance has changed from the dashingly handsome (O.K., I’m taking some poetic license) to totally disfigured and, one might say, grotesque? We’ve been trained by movies and TV to worship perfection. After all, the bad guy is always either bald, short, limps, is missing an eye, scarred or has some other abnormality to distinguish him from us, the perfect audience. My close friend recently told me he was “shocked, I tell you, shocked,” by my appearance when he saw me again after six months. I’m shocked sometimes too.

It’s as much a learning curve for me as for others. I am not sure how people will take me: whether I will make them uncomfortable, whether they will be able to overlook the changes and look for the person who still inhabits this misshapen head. I have to talk myself into going out now. A little pep talk reassures me that, whatever others may think, I must not quit trying. My difficult speech has similarly influenced my choices – I tend not to answer the phone and am now a listener in group settings, only lobbing in a few bon mots every so often, and then re-lobbing them until people understand. My timing is truly unique. To combat the verbal steamrollering of members of my family, I raise my hand before speaking. Quite humiliating, sort of, but very effective.

What do I want people to do? I want everyone to feel comfortable around my appearance. Don’t worry that you have to address my illness in a compassionate way, or at all. Just say what you want when you want. I’ll let you know if you offend, or if I need something. What I enjoy most is watching others enjoy themselves.

My friend Steve said to me, “Well, you’ve got that portly Asian look down now.” That was nice, funny and quite off the cuff. It made me feel that I could relax and not worry that the conversation was going to slide into the Grand Canyon of medical awkwardness.

My neighbor’s 3-year-old daughter treats me just like everyone else, someone to flirt with! So if you see a slightly hobbled, melon-headed man wearing a hat, walking toward you with a stick, just say, “Hi, it’s a great day, isn’t it?” And I’ll say, “Yep, it’s a great day,” and feel it too.