Hi. I’m Al Toman, and I am a cancer survivor. I live in eastern North Carolina so all y’all are welcome to stop by anytime and share stories or just talk about things! If you like the beach we’re just 6 miles up the road from the white sands and blue water. If travel is out of the question, please drop by our site and leave us your story. Your story will help the next person who’s about to go through what you already did, and they will thank you for it. The kind people of Knowcancer.com invited me to tell you my story, and see how we can help each other.
So, let’s hear a big round of applause for TheKnowme and the great folks here at Know Cancer who are making this happen. Back in 2007 I decided to take on T4 Squamous Cell Carcinoma. Actually, it broke my upper palate right side in mid August of 2006, eventually taking out my wisdom tooth. I decided I better do something about it. Through several local appointments I was directed to Carol Shores, MD, PhD. Within the first 30 seconds of meeting Dr. Shores, I decided that she was the one who was going to get rid of Mr. Nasty T4. At the time she was based at UNC in Chapel Hill, North Carolina -which is a good 3-1/2 hour drive from the shore.Let's just say we put a lot of miles on the car.
Fortunately, my sister-in-law lived only 1 hour away so her house became base camp. Before surgery, I became the victim of Dr. Minsley in the dental clinic. He and his crew are the ones who would craft my obturator. An obturator is a titanium plate with a plastic speech bulb attached to the top. The speech bulb goes up into my right sinus cavity. The titanium plate covers up the hole in my upper palate. They mounted 6 plastic teeth onto it so that I could look pretty :O) I had my first surgery (yeah, more than one) February 7, 2007. Dr. Shores took out my right sinus cavity, right cheek bone, right side of my upper palate, and the right upper jaw bone along with 6 teeth. I was in pretty darn good shape!
After my head mask was created, we started radiation therapy and chemotherapy. However, shortly into it I noticed a lump in the left side of my neck . That led to shutting down therapy and yet another surgery on August 22, 2007. Dr. Shores removed all my left side lymph nodes in my neck and biopsied those on the right. I looked like Frankenstein for a few weeks with steel staples going from one shoulder up my neck and down the other side. But that was cool! Radiation and chemotherapy continued after they reconfigured my head mask. They molded a plastic mesh mask around my head and marked targets on it for the radiation technicians to zap me in all the right places. After my face and mouth were totally fried, they allowed things to heal and then Dr. Minsley crafted and fitted the final obturator.
The obturator allows me to speak and to eat. Well, I really don’t eat. I drink all my meals. (No, I’m not an alcoholic.) Radiation kills fast reproducing cells- like cancer- but salivary gland cells are fast reproducing too. Consequently, they go the way of the cancer cells. They’re dead, and they don’t come back. Salivary glands create the spit that your mouth needs to lubricate all its parts. Without it, your mouth parts all stick to each other. Spit also creates a bolus around solid foods, making it easier for your tongue to push your food back to your throat, which then grabs and swallows it. I don’t have spit, so I don’t have bolus- which means no solid foods. If I try to eat a tiny piece of bread, it feels like sand in my mouth. It stays between my teeth and lips, down in my cheek. It won’t go down my throat. But that’s okay; I have people working with me on that.
In the meantime, I drink my nutrition. Dry mouth is worse 1) during sleeping, 2) when speaking, and 3) when exercising or physically working, like raking the leaves. Anytime air passes through my mouth, my mouth dries up and sticks to itself. I actually wake up during the night with my mouth sealed shut. It is very painful- it feels like a mouthful of millions of little needles. I tried every product on the market- including stuff from Germany, because it wasn’t even available in the States yet. Gum, spray, lozenges, you name it! Then my brain kicked in. Ann, the Nurse Manager on my radiation therapy team, told me that brine was the best solution. She said to carry a bottle of salt solution and rinse with it. I think she was retired military! I carried my trusty bottle of water everywhere I went. However, it is very inconvenient to stop raking leaves and sip water every 30 seconds. It is very inconvenient to stop speaking and sip every minute or so. It disrupted my sleep to get up and sip water in the middle of the night. Besides, I don’t wear the obturator at night. If I don’t wear the obturator, my right sinus, nose and mouth are all one big hole. Anything I put in my mouth immediately comes out of my nose. Nope- the trusty bottle just wasn’t going to work! Therefore, I had to come up with a better bottle.
I read one online forum where someone suggested one of those gerbil water bottles- I don’t think so! I got talking with my engineer and we built an electronic circuit with a programmable chip that would run a very small pump (that was given to me by a company in Japan). A company in North Carolina gave me some mouth pieces, and I acquired some very tiny tubing and a small plastic laboratory bottle. The XEROS Dry Mouth Pump was born! The XEROS Dry Mouth Pump consists of a pump, a battery, a water bottle, small tubing, a small sponge mouth piece, and the controller circuit. All of this fits into a small pack that you wear around your waist.
The tubing can be placed underneath your shirt; the sponge mouth piece is placed where ever is most comfortable in your mouth. I prefer to embed it into my lower cheek, but you can put it where ever it best works for you. The controller is programmable. You control how much water is delivered in a preset interval. For example, you can deliver 5ml of water every 30 seconds, or 10ml every 90 seconds. It's completely up to you! It has a day setting as well as a night setting that you can pre-program. Typically, the night setting is very low because you don’t want to be blowing bubbles in the middle of the night. Once programmed, you turn the pump on and forget about it!
The program is locked in; it won’t go away until you physically change it. The battery is recharged by a built-in circuit. A wall pack also comes with the unit for night time use. I built the XEROS Dry Mouth Pump for my personal use- however, I am well aware that others are suffering from chronic dry mouth, as well. I have already showed the prototype to medical experts and it was warmly accepted as a viable solution. I plan to present it to their trained therapists as well. Quite soon, we will make it available to whoever can use it, to improve the quality of their life. You can read more about it at my site.
That’s the end of my story at least for now except for one thing. I told TheKnowme that I’d cut a SPECIAL DEAL for Knowcancer.com members for the XEROS Dry Mouth Pump – and I don’t care what you say, I’m sticking to that special deal for ya'll! You can't talk me out of it- no way, no sir!
