Thursday, April 16, 2015

Letting go of the other shoe

This has been an incredibly busy week, by my current standards. And by busy, I mean that I had three appointments. The first was with my plastic surgeon, who was all smiles when he saw me. Finally, he could see my face...and I was smiling. The only unhappy moment was when he told me that the infernal itch in my arm, the one I can definitely feel, but can't even begin to reach, may last for up to a year. Seriously? A year? Thank goodness it comes and goes, if I had it continuously for the next year, I might lose my mind, or whatever is left of it. The second appointment was the big one, the dental evaluation. I had spoken to many of you about this and about my fears and trepidation going into this appointment. The dental eval is to figure out if you need any teeth taken out before they completely irradiate your face. The issue is that because the irradiated jawbone might not heal later, once radiation happens, you can never have another tooth pulled without running the risk of losing your jawbone to infection. Sounds fun, right? And given my history with my teeth (thanks Dad!), I was pretty certain I was going to need some teeth pulled. Then I started reading the cancer boards...not always a good idea. These boards are filled with truly amazing, inspirational people who are fighting or have already fought my war. They have walked a mile in my shoes, and so I look to them for wisdom and guidance. Many, many of them had all of their teeth pulled before they started radiation and are now living with full sets of dentures. When I read that, I started to panic a little. I mean sure, it would be great to get to pick my perfect smile, but that seems a little extreme. Other people who did not have their teeth pulled prior to radiation told horror stories about their teeth just randomly breaking off, two or more years post radiation. Ah, radiation, the gift that keeps on giving. Those stories threw me into even more of a panic. So now, I was faced with two possibilities (because there couldn't possibly be any other): have all my teeth pulled pre-radiation and deal with dentures for the rest of my life, or don't have them pulled and wait for the other shoe to drop. Neither seemed like a great choice. Enter the dentist, not my regular dentist, but one that Kaiser is contracted with to clear folks for radiation. A dentist a very long way from my house. After a panorex and a cleaning by one very freaked out dental hygienist (for an office that specializes in people with head and neck cancers, she didn't seem to ever have seen a tongue like mine or know what to do with me and my trach!), the dentist determined that I did not need to have any teeth pulled. We brought up the concerns about losing my teeth later, but he said that if I am extra hyper vigilant about taking care of my teeth, I should be fine. I sure hope so! Then came my most favoritest part of the appointment: I had to do impressions to fit me with my fluoride trays. You would think with all the advances in technology, they could find a better way to map your mouth than filling a huge metal, gag inducing tray with thick goop, choking you with it, telling you not to move for two minutes, then violently ripping the now dried goop off your teeth. They were only able to get an impression of my top teeth, my tongue was just too big and in the way to get that gigantic tray over my bottom teeth. So, a few hours after we arrived, we left there with one fluoride tray and instructions on how to use it. The instructions actually say "Fluoride stents should be used daily and forever." The fluoride, in addition to flossing, using the Waterpic, brushing, and various rinses throughout the day, is what is going to keep my teeth healthy, daily and forever. As we headed toward home, I wasn't sure how I was feeling. I was relieved but scared at the same time. All these what if's were swirling around in my head. Luckily, my hero of a husband, who is used to talking me down from the ledge and putting the brakes on the crazy train, said this to me: "Whatever happens, we will deal with it WHEN IT HAPPENS." When it happens, novel concept. So as we drove, I began to let it go (those of you with young children, or just Disney fans in general, you may begin singing now. Those of you who don't know what I'm talking about, lucky you!) I stopped waiting for that other shoe to drop...I can't worry about something that MIGHT happen two or three or ten years down the road. Honestly, I have plenty to deal with right now, in this moment. Beyond just the cancer and the radiation and all the things that go along with that, I have three kids to raise. I have a tween AND a three year old (some overlapping behaviors there!) plus a sensitive six year old in the middle. I simply cannot, and will not (from now on) live my life afraid of the future. So there it is, I have let go of the other shoe. As opposed to finding the other shoe, which is a game we play every morning as the kids are scrambling to get out the front door. (Honestly, where do those shoes go? Do they just wander aimlessly around the house in the middle of the night, looking for the best hiding place? They are never, ever where we expect to find them. But I digress...} The last appointment this week was with my surgeon, a man I have seen religiously every two weeks since my initial surgery. The most notable thing about this appointment, other than the fact that he did not stick a scope up my nose and down my throat (yay me!), was that I do not need another appointment with him until I am finished with radiation. Wow! I feel like I graduated! He did explain what will happen next, on his end of the treatment plan. Three months post radiation, he will order scans to make sure there is no more cancer (my new birthday!) and to use as a baseline. I will continue to see him throughout the year, but then I will have scans again at one and two years. He told us that if this cancer is going to recur (no thank you), there is an 80% chance it will happen in the first two years. Really, I'll take a pass. Again, not going to worry about things that I have absolutely no control over. There is that word...control. I have a whole lot of thoughts about this subject, but this has already turned into a long post, so I think I will put that on the back burner for a while. The next major milestone comes Monday, when I go to my planning appointment for radation. Treatment should start about two weeks after that. I'm sure I will have a lot to say on that subject. But for now... Sparkles and love to you all, Gayle

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