Back in the 1950s radiation treatments were “The Thing” for children’s ailments. They “cured” all sorts of illnesses from chronic earaches to fibroid cysts. However, towards the end of the decade, scientists determined that maybe radiating children and adolescents wasn’t such a good idea after all.
Unfortunately, I already had had 3 radiation treatments to my left ear in order to get rid of any adenoidal tissue that surgery had missed. I remember walking down the cool, dark, marbled hallway in a big, downtown-Indianapolis building with Mom holding my hand. She opened the pebbled glass door to the doctor’s office. Mom had to stay behind, when I was escorted into the radiation room, which was dark and cold. I was laid on my right side upon a table. A square metal plate with a square hole in the middle was placed on the left side of my head so that my ear and surrounding area were exposed. I was told to stay still and that it wouldn’t hurt.
This big machine was pulled down until it almost touched my ear. After a few moments there was a high buzzing noise. It went on and on for a long time. Then it was over. I was helped off the table and taken to the other room. Mom looked worried, but I told her I was okay.
This happened two more times, but Mom cannot remember the time frame. My earaches stopped and all was well.
Life went on. We moved to Texas, where I attended Ingleside High School and continued competitive swimming in Corpus Christi. A very nice lady down the block from us gave me my first compliment. “You have a beautiful smile.” After a year at Del Mar College, I married and moved to Indiana, then Massachusetts and California. I returned to Texas with Judson and Tyler in tow. By the time I was 27, I had remarried and had my daughter.
It wasn’t until a few months after Merideth was born that I noticed the left side of my mouth wasn’t exactly the same as the right when I was making faces at her. However, I did not go to a doctor about it until three years later, when I noticed that my left eye was bulging.
The ophthalmologist came into the room, looked at me, and said, “Oh my god!” (Quite a way with words.) He did not even examine me.Thinking I had a tumor behind my eye, he sent me to a neurologist, Dr. Lee, who was the first in a long line of physicians who misdiagnosed my problem. Dr. Lee informed me that I did not have Bell’s palsy or a tumor; rather it was degenerative paralysis of the 7th cranial nerve that was distorting my face. He gave me some facial exercises to do to keep the nerve active.
For the next 25 years, I sought help from several doctors and an acupuncturist to no avail. This photo was taken in 1986 and was my last good smile. My left eyelids did not blink, so it made my eye look like it was bulging. I had a tiny weight implanted in the upper lid so that my eye wouldn’t dry out. (I was now able to wink, which was a plus.)
In 1998 I was having some recontructive surgery done on the facial nerve. The surgeon was going to take a piece of good nerve and graft it to the facial nerve in hopes of restoring my smile and blinking. This never happened. Five days later this idiot tells me that when he opened up my face he found some repulsive grayish matter where my salivary gland should be. This mass of mutated cells had strangled the nerve. He said he took out the quarter-size mass and did do the nerve graft, but as I never improved that is doubtful. The pathologist diagnosed the specimen as salivary gland cancer. Danny and I never did figure out why this doctor didn’t tell us this while I was still in the hospital or over the phone a couple days sooner. It was like the guy was in shock over what he had found and it spooked him. After the swelling went down, I realized the surgeon had not properly repositioned my ear. (It really sticks out now.)
I was sent to an oncologist, Dr. Sacks, who specialized in radiation therapy. After the first visit with him, I searched online at the American Cancer Society. Right there in plain sight was stated, “The main cause of salivary gland or parotid gland cancer is childhood radiation. ” Whammo! All these years I had been telling every doctor about my radiation at age 9. No one said anything. When I told Dr. Sachs he was surprised. This guy had accolades plastered all over his office walls. How could he be surprised?
A second opinion came from a Stanford oncologist who told me that I should have half my face excised. Therefore, I reluctantly chose to have 31 radiation treatments done, because there was a chance that cancer cells could go up into my brain. Dr. Sacks said I would not lose my hair or anything worse than having a dry mouth, poor taste, and some reddening of skin at the radiation site. Well, he was wrong again: I am permanently deaf in that ear (but that does allow me to sleep soundly by sleeping on my right side), I lost the hair around my ear, and my skin turned purple. After the 31st treatment, I was told he wanted me to have 2 more treatments to be sure. I cried.
Soooo, here I am, ironically waiting for those 33 treatments to give me even more tumors. Ain’t medicine grand!!!Needless to say, I do not like having my picture taken. Cameras freeze my freaky crookedness, which has children questioning me and adults asking if I have Bell’s palsy. It’s very weird to grin and laugh on the inside and not have it reflected on the outside.
Note: I have a friend in Austin who had radiation treatments for fibroid cysts in her breasts. She developed cancer and had a double masectomy…My sister Lisa developed Hodgkins disease while training to swim the English channel in the late 70s. Besides chemo, she was given radiation treatments to her lymph nodes. A few years ago, she also developed breast cancer and had a double masectomy. I do not believe that radiation treatment is used sparingly enough. While it may kill cancer cells, it also mutates healthy cells.