(wrote this a while back and for some reason never published it. someone might find something useful here)
With my diagnosis being in February 2011, it seems like every few days or so it is the one-year anniversary of something, first radiation, first chemo, first PET scan. I haven't posted in a while so I should catch you up.
I have gained most of my weight back. In fact, I could have probably gained it all back but decided to stay at the 190 mark or so which is about 20 pounds lighter than my old weight. I must confess that I really wanted to stay at 185 but blew by it so fast that I dropped anchor at 190. I have been hitting the gym like a madman and running every chance I get. My body changed dramatically through the ordeal and in a good way. My wife tells me I am leaner and I have stayed one waist size smaller for the same weight. However, I do not recommend my weight loss program...
I spent about 8 weeks in swallow therapy. That little trip started with a very funny phone call. My phone rings and a very pleasant lady on the other end tells me she is a speech therapist and that I had been referred to her for eating/swallowing issues. I wasn't the one who complained, I was referred by the cancer clinic so we were both confused. We started the process with a little interview in which I told her I was fine and if this was as good as swallowing was gonna get, I had already adapted. I went into the process thinking it was a waste of time and that I was already good. She convinced me to give things a try. We did a swallow study which involves turning an X-ray table on it's end, standing in front of it and eating/drinking several different things mixed with barium. It doesn't taste bad. It doesn't taste. If someone hands you a loaded spoon and says "This is applesauce.", that tells you everything you need to know. "This is a water consistency. This is nectar consistency." Everything is white and devoid of taste. The actual x-ray is one of the coolest things I have ever seen. You can see the "food" get chewed, balled up and swallowed and follow it on the screen into my stomach. Unfortunately, that is also where the trouble started.
There is a little flap everyone has that, when you swallow, flaps down and seals your airway so you don't inhale food or drink. Everyone has done this at least once triggering an instant coughing fit. Unfortunately for me, the nerves that start that coughing fit were fried by radiation meaning I could inhale water, soda or beer (probably beer) and not even know it. That is not good. Little pieces of food also tended to hover around an area where I could possibly inhale them. That started the therapy which involved lots of swallowing. Sometimes with water. Most of the time dry and most of the time while doing something wierd with my tongue to make it even harder to swallow. For a guy that doesn't make enough spit to begin with, it gets hard pretty quick. After a while we added a little machine I called the ShockMan (crap, most of the people who read this aren't old enough to remember the WalkMan. oh well). They stick electrodes on my neck and start to crank the juice which tightens whatever muscles they need to make it even harder to swallow. It's not unpleasant but I don't want to buy one so I can play at home. My first follow up swallow study showed much improvement but still showed some stuff hanging around. Six more weeks of therapy and I would have bet you money I was 100% but failed that test too. Right now we are in a holding pattern: we are either going to roll with things the way they are or possibly more therapy.
Tuesday, November 27, 2012
Thanksgiving Again!
Just revisited the blog and saw my last post was one year ago. A ridiculous amount of stuff has happened in the past year and nearly all of it good. Since the tongue cancer thing was what started the blog to begin with, lets just start there.
I remain cancer free (Thanks be to God!). In all honesty and to those who may happen upon this who are looking for info, here are the hangers on issues from the battle:
1) Medium volume, non-stop ringing in my ears from the Cisplatin. I learn more every day about what makes it worse and what doesnt. Easy on the caffeine. Get plenty of sleep. I loose some ability to communicate in a very noisy place as others voices get lost in the din.
2) Really strange spit. I am told there are two components to saliva, one thick and one thin. I dont make as much thin as a normal person but I MAKE SPIT. That is a huge plus. I actually make enough to run 3 miles without carrying water. The cold weather does impact that but I am adapting. I know some people who went through what I did and dont have any spit and maybe never will. I have not lost sight of the fact that I am very blessed.
3) Swallow issues remain. Swallowing is OK for the most part. I know what causes me problems and I avoid it (stringy stuff, granola, bread, etc.). I love chicken tacos which are stringy, so I soak them in salsa. I love bread so I soak it in gravy. It is such a minor complaint but I just have to give a little thought to what Im eating and adjust accordingly.
4) Neck cramps. Im not gonna get tough guy with you on this, they bring me to my knees. I am lifting weights at the gym which does make matters a little worse. It can be any muscle in my neck but the worst are the ones where the pain is at the point where the neck muscle attaches to the back of my skull. Once they cramp, you can tell they will cramp again if you turn your head just so... kind of like when your hamstring is on the verge of cramping. At some point the cramps will override my desire to lift and that will be that.
5) My taste is back but not like it was. I love some things I just liked before. Some of the things I loved before do nothing for me now. Pecan pie was the one food item I could not live without. Now, its just OK and it breaks my heart. Fortunately, beer has replaced pecan pie as the one food item I could not live without AND it healed my broken heart. Viola!
I have 3 friends who have all won their battle with head/neck during the last year and one friend who didnt make it. The guys who made it did better than I did and made me very proud! I continue to attend the SPOHNC meetings and try and help any new folks and I cant help but learn something that helps me, too.
My amazing wife wanted me to skydive for the one year celebration. As she was looking for deals, she found an outfit in the midcities that lets you drive a sports car for an hour (www.driveyourdream.com). She surprised me with a drive and picked the car for me, a Lamborghini Gallardo. Way way cool. A couple of days after purchasing the drive-around, up pops a deal on skydiving. So one week after tearing up the Fort Worth streets in the Gallardo, I jumped out of an airplane at 10,800 feet. It was every bit as cool as I thought it would be.
I remain cancer free (Thanks be to God!). In all honesty and to those who may happen upon this who are looking for info, here are the hangers on issues from the battle:
1) Medium volume, non-stop ringing in my ears from the Cisplatin. I learn more every day about what makes it worse and what doesnt. Easy on the caffeine. Get plenty of sleep. I loose some ability to communicate in a very noisy place as others voices get lost in the din.
2) Really strange spit. I am told there are two components to saliva, one thick and one thin. I dont make as much thin as a normal person but I MAKE SPIT. That is a huge plus. I actually make enough to run 3 miles without carrying water. The cold weather does impact that but I am adapting. I know some people who went through what I did and dont have any spit and maybe never will. I have not lost sight of the fact that I am very blessed.
3) Swallow issues remain. Swallowing is OK for the most part. I know what causes me problems and I avoid it (stringy stuff, granola, bread, etc.). I love chicken tacos which are stringy, so I soak them in salsa. I love bread so I soak it in gravy. It is such a minor complaint but I just have to give a little thought to what Im eating and adjust accordingly.
4) Neck cramps. Im not gonna get tough guy with you on this, they bring me to my knees. I am lifting weights at the gym which does make matters a little worse. It can be any muscle in my neck but the worst are the ones where the pain is at the point where the neck muscle attaches to the back of my skull. Once they cramp, you can tell they will cramp again if you turn your head just so... kind of like when your hamstring is on the verge of cramping. At some point the cramps will override my desire to lift and that will be that.
5) My taste is back but not like it was. I love some things I just liked before. Some of the things I loved before do nothing for me now. Pecan pie was the one food item I could not live without. Now, its just OK and it breaks my heart. Fortunately, beer has replaced pecan pie as the one food item I could not live without AND it healed my broken heart. Viola!
I have 3 friends who have all won their battle with head/neck during the last year and one friend who didnt make it. The guys who made it did better than I did and made me very proud! I continue to attend the SPOHNC meetings and try and help any new folks and I cant help but learn something that helps me, too.
My amazing wife wanted me to skydive for the one year celebration. As she was looking for deals, she found an outfit in the midcities that lets you drive a sports car for an hour (www.driveyourdream.com). She surprised me with a drive and picked the car for me, a Lamborghini Gallardo. Way way cool. A couple of days after purchasing the drive-around, up pops a deal on skydiving. So one week after tearing up the Fort Worth streets in the Gallardo, I jumped out of an airplane at 10,800 feet. It was every bit as cool as I thought it would be.
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