There's a Hair in my Soup

I was going to wear the wig, honest. I had every intention of wearing the wig. It was a cute wig. It was a short style in a sort of neutral color and a little reminiscent of Doris Day. Why would I pick a wig like that? My hair was short and stick straight and practically maintenance free. Why did I think bald was going to be bad enough to subject myself to what amounted to a fuzzy fur cap? Obviously chemo clouds your judgement.
Fourteen days after starting Taxol my hair was coming out. The stories I'd heard about it washing down the drain in the shower and falling into my food were true. I went to my hairdresser and she cut it VERY short. I wasn't ready to let go. Then I was shedding worse than the cat and I had to just do it. Debbie and I went to the back porch with scissors and a razor and she shaved my head bald. WOW! But I was ready. I had my wig.
We tried so hard to make it be okay but I looked like a baby bird. I have an absurd sense of humor and I can laugh at myself but this was a stretch even for me. I had to put on that stupid wig and go out in public! I was kicking myself for buying something so conservative. I should have gone to a costume store and bought ridiculous wigs of purple or lime green fiber optics. I wouldn't have felt any more self-conscious. But, alas, I was a public school librarian and society has its expectations so I donned my unremarkable wig and went to school.
The faculty and the kids were great. I hate feeling like the elehant in the room so when it was appropriate I initiated conversation about my new hairdo. People often hesitate to bring up the obvious because our mothers taught us to be polite and not stare. This might work for some people but I hate it. It is what it is, so say it.
Spring comes early in Arkansas and it's warm and humid. Wigs are hot and itchy. I hate to be uncomfortable. That equation decided my next move. I had already started pulling it off in the car on the way home so I just needed to take the next step. On a warm afternoon after school I just did it. Standing in the office, visiting with good friends before going home, I just yanked the damn thing off. We were all surprised. It was a spontaneous move and I couldn't take it back. There I stood, bald and vulnerable. In just a second we were laughing and I received the validation I needed to throw the wig in a drawer forever.

A long and winding road

Like a long and winding road my cancer journey has mile markers.

1. April 1984 - removal of a primary tumor in a salivary gland on the left side of my neck and subsequent radiation therapy
2. September 1996 - a radical neck dissection to remove a large tumor from the left side of my neck. This involved the removal of my left jugular vein, my sternocleidomastoid muscle, and a nerve graft so I wouldn't lose the use of my left arm.
3. February 1997 - the removal of a small tumor in a salivary gland on the right side of my neck.
4. January 2001 to May 2002 - chemotherapy to try and eradicate the tumor embedded in the muscle of my left cheek and the two tumors in my soft palate.
5. June 2002 - surgery to remove the above mentioned tumors because they weren't remotely impressed with any of the chemo drugs.
6. June 2005 - surgery to remove my left jawbone and the tumor that had infected it.
7. January 2006 - removal of a lymph gland on the right side of my neck
8. February 2006 - removal of a small tumor on my larynx
9. March 2006 - throat dilation to try and correct some of the damage that all the above surgeries had done to my throat
10. July 2006 - quit working, moved to the lake, bought a Sea-Doo water craft and I haven't been sick since (knock on wood)

Conclusion: Work is hazardous to my health.

The Sky is Falling!

Cancer is SCARY. I don't care what kind you have or where it is. It scares everyone you know and everyone they know. This fact alone keeps people from getting help. It doesn't make sense but it does, you know what I mean? Like this, I knew I had a tumor in my neck but I was able to convince myself it was a pulled muscle. I was the only one who believed that. Everyone knew the truth but I wouldn't talk about it. This is where some smart ass tells you that denial is a river in Egypt. I would be furious if anyone suggested otherwise and believe me, they tried. This lump was big enough that it prevented me from turning my head to the left but I marched stubbornly forward, taking anti-inflammatory drugs and sticking to my story. Here's a note; Flexoril will not cure cancer.

It's embarrassing to share my stupidity this way but I need to make the point that my next 10 years might have been very different if I had faced my fears and been diagnosed in an earlier stage of the disease. We'll never know but you can believe that I keep my appointments and if one thing changes on my neck I'm looking for answers. Head and neck cancer usually has a high survival rate but if you don't get it treated that prognosis is seriously compromised.

My sister, who is as stubborn as I am, didn't give up. She made me an appointment with Dr. James Y. Suen at the Arkansas Cancer Research Center. He's the head of the head and neck department, director of the ACRC, a doctor to Bill Clinton and Steven Spielberg.

I had to be referred by an ENT first so I went to Dr. Hearnsberger. He performed a fine needle biopsy and informed me he would call me with the results. That's a call I won't forget. I was at work when he called. My telephone was red and I saw it as a symbol of the gravity of the situation. Dr. Hearnsberger, in a much too cheerful voice, announced "You have a malignant tumor in your neck and you need to see Dr. Suen at the med center." I think he talked some more but I couldn't hear him. I had to go home. I couldn't look at anyone or talk. I was numb and probably shouldn't have driven but I didn't think about that at the time. I just had to get home, home to Debbie who is my life partner, best friend, and rock. If I could get to her we could make sense of this dreadful news. She'd make it okay. On the bright side, I had the appointment with Dr. Suen that my wonderful and stubborn sister had made for me.

Palate Gossip

I had 2 tumors removed from my soft palate in 2002. This operation left me with a hole in the roof of my mouth about the size of a dime. If you know any anatomy you know that a hole in your palate allows food and liquid to squirt or dribble out of your nose. This is great fun if you're in the 7th grade but it's pretty distressing if you're over 50. Besides that, it makes you talk funny. If you've ever tried to talk to a person with a cleft palate you'll know what I sounded like. My friends who taught special ed were the ones who understood me the best.
I was fitted with an expensive piece of acrylic that had 2 tiny wires on each side that fit into the roof of my mouth like a retainer. To get to another tumor during the same operation Dr. Suen had to break my jaw so getting my mouth open wide enough to insert this monstrosity created another problem. I love to talk and eat and both endeavors were seriously compromised.
Even though the obdurator (fancy word for chunk of acrylic) was fitted to my mouth there is no way something like that can replace your natural plate. It was never tight enough or level or comfortable. I spent hours fiddling with it and that wasn't smart. I kept a small arsenal of tools to monkey around with the wires. I started with needle nose pliers but the wires were tiny and that was overkill. Then I hit on the perfect tool...hemostats! The wires had to curve around my teeth just right to hold the obdurator tight against the roof of my mouth. More than once I broke a wire off and had to have it repaired.
I tried using denture adhesive but I got a quick anatomy lesson. If you think snotty sinuses are a problem try blowing out Polident! Then one day during an adjustment session the dental tech told me to try Sea-Bond. This is a denture adhesive that comes in the shape of dentures. For the next couple of years I kept this company solvent. I became an expert at trimming those little sheets to a perfect fit. I had to change it almost every time I ate but it really improved my drinking, as long as I was in an upright position. Nothing helped if I drank from a bent over position, like at a water fountain. I learned that at the county courthouse during jury duty when I bent over to get a drink and every drop shot out my nose. I learned to look for a cup.
Before I left the house I had someone listen to me and tell me if my speech was understandable. If no one else was home I used the answering machine. I called my house from my cell and left myself a message. If I could understand the message I left the house. If the sound was muffled or hard to understand I went back to the bathroom for fine tuning. I carried Sea-Bond, hemostats and scissors all the time. Security took my little blunt nose scissors away from me at an airport one time but I made a case for the hemostats and was allowed to board. I had precut some sheets to carry with me but I was in a virtual panic until I landed and bought another pair of scissors. Without the obdurator I could not do the three things we humans depend on the most: communicate, eat, or drink. My world revolved around it.

Rule #1: seek professional help

Rule #1 should be "Don't monkey around with a post that's been posted." I did and I lost it so I'm going to rewrite it. This advice is too important to skip over.

In 1984 I had a malignant salivary gland removed from the left side of my neck. My doctor at that time thought I should take radiation to make sure the area was clean. I went to work, got a divorce, bought a house, and didn't miss a beat. I was slightly nuts but I just kept moving, like a shark. I was afraid to be still.

Sometime in 1995 I knew I had something growing on that side of my neck again but I convinced myself and my GP that it was a pulled muscle. I played that game for a year because I had been told by my radiologist in 1989 that if the cancer came back it would be tits up for the home side. That doesn't excuse my stupidity but it explains it. If I was going to die I'd just as soon not know it.

By the time I got to Dr. Suen at the Arkansas Cancer Research Center in 1996 the tumor had vined around my jugular vein, my sternocleidomastoid muscle, an accessory nerve and some other stuff. My fear was paralyzing. His first directions to me were to make an appointment with the behavioral therapy department. That's fancy for shrink. Dr. Suen told me he couldn't cure my body until my head was screwed on straight. This was the single best piece of advice I was given.

I started seeing Dr. Sherman but I was scared and mad and acted like an ass. I whined, wheedled, and cussed a blue streak but it didn't phase him. The more he ignored my bad behavior the worse I behaved. After several sessions like this I was so frustrated by his lack of reaction I burst into tears. That must have been what he was waiting for because he threw me a box of Kleenex and said, "Now we can get somewhere."

With his help I began to work through the fear and the anger and I found reserves of personal strength I didn't know were there. I began to level with myself and understand that I wasn't in this alone. I had the support of family and friends and they needed to help me as much as I needed the help. It was okay to let my guard down once in awhile. For someone who is scared of not being in control this was the scariest of all.

Since 1996 Dr. Suen has operated on me 7 or 8 times, I've lost track, but what I learned with Dr. Sherman has stayed with me. None of us can battle cancer alone and it's not a sign of weakness to let someone help you.