I wrote this over a year ago for an organization that supports people with head and neck cancer. It's a good update for the time missing between the last blog and early 2008

A little over a year ago I wished I was dead. Life was unbearable. My body had been violated. Parts of me were carved away. Parts of me were burnt. My mouth was filled with huge, yellow sores. Other parts were redirected and I had been turned inside-out. Each morning I silently railed at the Angel of Death for not coming to take me in yet another night spent at the edge of sleep, unable to dream because of the pain medication.

I’m Janet Wilder. I’m 61 years old, a small and feisty Jersey Girl now living in way-the-heck-south-Texas. I have always been healthy. I have always been a marathon talker, raconteur, seminar deliverer and a loud and tuneless singer.

In the summer of 2004 my tongue began to feel sore near the lower, left rear molar. I saw a dentist. He didn’t see anything wrong. I saw a doctor. He didn’t find anything wrong. Six months later the spot was still sore. I saw another dentist and asked that he file down my tooth. He didn’t find anything sharp. I went to another doctor. He didn’t find anything wrong. I tried yet a third dentist and all he wanted to do was charge me thousands of dollars to do work in other places of my mouth. I went back to the second dentist and the filing commenced. By May of 2006, I was wearing a temporary crown and my tongue really, really hurt.

While accompanying my husband to his doctor visit, he mentioned that I had been complaining about a sore on my tongue. He suggested I show it to the physician and “get some medicine” for it. The doctor looked into my mouth, turned pale and declared that there was no medicine for it. He immediately sent me to the ENT across the street. Because I was in pain the doctor took me in immediately. He donned a glove, felt my tongue, looked into my mouth with a flashlight and pronounced: “you have cancer”. Just like that. No dramatics like in the TV shows. No “lets take a biopsy and see what comes back”. Just those three dreaded words: “you have cancer.” The doctor felt it was small and localized and called it stage I squamous cell carcinoma.. He took a sample for a biopsy, gave me some pain killers and a prescription for lidocaine gel, set up a CT scan and told me that I would just need the surgery since it was small and early.

The scan was clean. I was unhappy about having part of my tongue carved away, but small and early are encouraging words. I went in for the surgery. When I awoke in the recovery room the ENT was at my side. “I’m so sorry,” he said. “The tumor was bigger than we expected. I had to take half of your tongue. You have had a hemi-glossectomy.” I managed a garbled “will I ever talk” and made myself cry. He assured me that my speech would improve when the swelling went down. The half tongue that was left felt like two tongues, it was so swollen.

At my first post-op visit the ENT suggested radiation and possibly chemotherapy. The size of my tumor had put it into the stage III category. Protocols must be observed. There was a possibility that a microscopic cancer cell was floating around in my body and it must be killed before it attacked me.

I visited the local medical oncologist, a prince of a man who agreed with my preference for quality of life not quantity of life. He didn’t think I needed chemo, but made me a second appointment to see him after I’d seen the radiation oncologist. I also got onto the internet and learned about the ravages of head and neck radiation. I was scared. I’m a hard-core claustrophobic and just the thought of wearing the mask terrified me. I was willing to take my chances with that microscopic cell but the family, meaning well, insisted I embark on the treatment. As anyone who has been through radiation knows, the cure can be worse than the disease.

I was not impressed with the radiation oncologist. Not that he wasn’t a good doctor but that it didn’t appear they had the resources to deal with the side effects. The nurse handed me a little booklet about side effects and told me to make an appointment to be fitted for the mask. I told my husband that I wasn’t going to get radiation. He wanted to hear what the medical oncologist had to say. We saw him and he agreed with me about head and neck radiation at the local facility. They are a good facility for breast cancer, prostate cancer, colon cancer, but if they see one head and neck cancer a year it’s a big deal. He made an appointment for me at the University of Texas MD Anderson Cancer Center in Houston, Texas, one of the top three head and neck cancer centers in the country.

The medical oncologist at MDA was a little unhappy that my ENT had not done a neck dissection but he sent me to the radiation oncologist. I had a PET scan which was clear and I was scheduled for radiation therapy. They sent me to their dentist who x-rayed my teeth and declared I would be losing some of them.

We live five hours south of Houston and we needed a place to stay during the six weeks of radiation and the planning visits before it began. We had a motor home and found a campground close to the hospital that had special rates and a shuttle bus for campers. We brought our little dog with us and towed our Honda Civic behind the motorhome so we would have a daily driver.

The morning I was supposed to see the dentist to have an unknown number of teeth pulled, our little dog died. She was nine years old and had some heart problems for which she was medicated, but her death was unexpected. The dentist pulled three lower teeth. Two directly to the left of the front teeth and the next to the last molar on the right.

A few days later I saw the oncological dentist who made a stent for me to wear during radiation that would protect salivary glands and tissue that did not need to be radiated. He also made my fluoride trays and directed me to start using them as soon as I started radiation.

The radiation team knew of my claustrophobia and I was given Ativan before the mask making and simulation. I also took one before each treatment. Even with the drugs, I could barely tolerate the mask.

I went through the horrors of radiation. My mouth hurt, I could barely swallow, my neck was red, raw and weeping, but we drove the car home every weekend and I took great comfort in being there, even if it was just for a few days. I was holding my weight using Slim Fast so I cancelled the insertion of the feeding tube.

By the last two weeks I was heavily medicated with morphine and methadon in liquid form. The patch did not work and I was allergic to the adhesive. I had a variety of swishes and was religious about my baking soda rinses. Pain could be killed long enough for slow sipping of canned nutrition and water. My taste buds went away, but before they left they got weird and everything tasted vile. Everything that went into my mouth had to be room temperature.

Because I had no treatment on Labor Day, I was to double up on that Thursday. I had my treatment in the morning and then I was to see the radiation oncologist for my weekly clinic visit. I complained that my stomach hurt. I had a fever so they sent me to the emergency room where they sent me for an x-ray. A doctor came in and told me that my colon had ruptured and that I needed to have surgery immediately. This with only 4 more radiation treatments to go.

I awoke from the surgery with a colostomy. The surgeon called it a “double barrel” because both ends of the colon had been brought to the surface. The pain medication had slowed down my digestive system and there were large pieces of stuff stuck to the wall of my colon. Other stuff moved through the “normal” way (if you can call 8 Sennakot S a day “normal”)and while it was passing through it pushed the hard stuff right through the wall of my colon.

This was much more than I had bargained for. All of this to defeat a hypothetical microscopic cancer cell? I’m a fighter and there must have been a spark left somewhere within me because when my radiation oncologist appeared at my bedside a few days after surgery to encourage me to finish the last four treatments, I agreed. I finished them as an in-patient. After a week, they sent us home to our motorhome.

I spent one night there and was back in the hospital the next afternoon. My temperature had begun to rise. The emergency room doctor looked at my incision that stretched from navel to the bottom of my abdomen and decided that part of it was infected. He took out the staples and left a six inch long by three inch deep red, angry gash in my stomach. Then he showed me how to pack it with gauze dipped in saline solution and cover it with dry gauze. He assured me it would heal from the inside out. We didn’t believe him.

I was admitted to the hospital again for dehydration. By that time my mouth was so bad and my spirits so low that I was anorexic. I asked for the feeding tube. They looked at my shrinking abdomen with the huge appliance covering two pieces of colon and the enormous gaping wound and said: “where would we put it?” I spent another week in the hospital.

Don’t ask how I managed to survive. I just did. After two weeks we got permission to return home so we hitched up and left. I do not sleep when taking opiates. I doze and awaken in a series of very short naps, but no REM sleep. I was already off the morphine and had finished the tapering-down program on the methadon, but still not sleeping. I was depressed. I only wanted to die. When the last of the drugs left my system, I managed to sleep for a few hours at a time and that’s when I started to get better. I now recognize that I was sleep deprived.

Two and a half months after the colostomy, I convinced the gastric surgeon to reconnect me. The surgery was painful, leaving me with yet another open wound to care for. My body, though starting to make a comeback from the depths of hell, did not have the resources for a speedy recovery. It took me four months to recover.

It has been 18 months since my hemi-glossectomy and a little more than a year since the second gastric surgery. I have gained back some of the weight I lost, climbing from 98 pounds to 113. I’d like to give back 5. I have my old energy back and I have no evidence of cancer. I still have some issues with my bowels, but everything is under control and I will be starting to go to the gym soon. There are things I will never be able to eat again, but there are plenty of things I can enjoy. I’m not missing any tastes, though I still can’t tolerate hot or cold foods and only the first bite of ice cream tastes good. The rest only feels good. I have a partial denture and just got permission from my dental oncologist to get some veneers as long as no work goes below the gum line.

My ENT and my radiation therapist are astounded by how well my speech has recovered. My voice has power and range though I lisp. I’m very conscious of it, though others say they barely notice it. A few nights ago I went with my husband as moral support to an audition for our local community theater. I read for a part just to see if I could, even though the director was looking for “diction.” I got a part! My husband says it will give me confidence. I’m a little scared, but I’ve been scared worse.

It is mid-December as I write this and I am thinking that in this season of miracles, I am one.



I’ve been asked to update my story that was written in mid-December, 2007 for May, 2008 publication.

I was a great success in the community theater play. Everyone understood me and I gained the confidence I lacked in my own speech ability. Most people don’t even notice my speech imperfections. I don’t know if I’ll ever perform in another play, but I do recognize that I have overcome a problem that was more in my mind than in my mouth. All that I needed was someone else’s confidence in me.

I have started going to the gym 5 days a week. On Monday, Wednesday and Fridays I take classes in water aerobics, Body Pumping ® and Pilates ®. On Tuesdays and Thursdays I take a Yoga class and on Tuesday nights I am learning to belly dance, though I shall never, ever, do it publicly. I am working on restoring the physical strength that a year and a half of illness took from my body. I am even getting some strength back in the abdominal muscles that were carved up like a Jack-O-Lantern for the two gastric surgeries.

Before this is published, I will have participated in a local American Cancer Society Relay for Life. I’ll have walked not only for myself but for all the other cancer patients I’ve met either in person or through many of the support boards on the Internet.

I still have a little over three years before I can be “cured” but for right now, I’ll settle for being a chatterbox with no evidence of disease.