Friday, January 15, 2010


  Slept so-so last night, started to post but didn't. It got late quicker than I thought and I was worn out. My throat felt like it was swollen inside but nothing like tonight. Over the last few days too I've encountered a few people with throat cancer that they thought were cured only to find out they wasn't. That is just a bit depressing so I didn't write.

  We arrived at UT at the regular time but the waiting room had a few in it already. We sat for a while and waited as the computer had to be shut down and restarted. I still haven't seen the lady that has throat and mouth cancer, I know she wasn't through yet. The other lady that comes with her husband asked if we had seen her or the young man that has throat cancer in a while. They are there before we get there. The guy with a beard who goes after me said he hasn't seen either this week, except maybe Monday. I know the lady with throat and mouth cancer had to take a 2 week break at the same time that I did and I know she lacked as many if not more treatments than I did.

  After we were done with the treatment I took Ruth up on her offer for an IV for fluids. Me and Charlie walked over to the Chemo Hut and then Charlie went back and moved the truck from the parking lot where we park for radiation to the parking lot where the chemo is. I took 1 bag, maybe should have done 2 but I decided not to. I felt a lot better after the one. I believe that I was getting dehydrated. It's pretty common for me to have night sweats. Funny, this is the first time I've bruised from the IV. Ruth gave me a prescription for more pain patches. We will get them filled tomorrow.

  While in the Chemo Hut I met a man who was doing his first Chemo with his wife at his side. He has throat cancer too yet he never smoked, no acid reflux, and no alcohol. Charlie and I told him what those who told us to use. gave him tips on lotions, drugs, numbing agents, moisturizing mouth sprays, and staying away from eating with anything metal. He was fast asleep when we left. The guy was in good spirits and a good sense of humor, I think he will do fine. He was like me when I first started this, a bit on the heavy side. He said he loved to eat. I didn't tell him that eating would soon be a chore and not a pleasure.
 Charlie and I went out shopping, but we didn't buy anything, lol. Harbor freight and Northern Tools. Then since we missed breakfast we hit Shoney's buffet bar. While food has very little taste, I still remember when it did have taste. It is hard to explain to someone that everything either tastes bad or not at all. Eating is just merely something you do to survive. I love the "what do you feel like eating?" or the "what would you like to eat?" question.  

 Denise noticed that my outside throat, especially on my left side is almost like it was when I went to the hospital. For the last 2 nights I've been dressing my neck myself so this was her first close up look at it in a couple of days. The treatment is quicker but focuses maybe even more intense on just a fewer areas. Tonight, even more so than last night I'm having difficulty breathing from the swelling inside my throat. There is a lot of mucus and or thick saliva coming out I have to spit up. Tea is still acceptable and water, but not too cold with pain. It takes that third swallow from a sip to get past the gag reflexes, least you get choked. One sip, two swallows then a third. 

  Anything that is below room temperature is like fire when it goes down yet Denise says cold will take down the swelling. The outside pain is not too bad and the pain patch is managing it fairly well, the inside however is another story. I've been having to take 1/2 the Endocet every 4-5 hours to manage it. It's hard to sleep because you feel like your throat is going to shut off. The bleeding from where I cracked my throat open however has finally stopped. Swallowing is still fairly manageable. I've taken some Benadryl and biotene, occasionally using the Lidocaine, especially if it's a very cold drink. The outside of my throat is throwing off quite a lot of heat, not to mention the skin is once again coming off. These are deep burns again, a bit deeper than I expected.

  I have 4 treatments left, surely I can finish the 4. Talk about coming full circle again. Before I was diagnosed I fought sleep from fear I wouldn't awake, now I do the same thing. I've got an oxygen tank out in the Sunroom and I use to sneak out a catch a few breaths of it. I think tonight I will do it again. It's almost as if you are smothering even though you are breathing. Like breathing through a collapsed straw. I've tried nose and mouth breathing, still the same. Thank God I have a two day break yet it does make me wonder. If what the do today I get the effects the next two weeks, I am about to be in for a rough month.

   Me and Bill went out later this evening and I bought another camper top. The cold air felt so good on my throat. I'm wondering if maybe a cold compress should be applied to the outside of the throat to reduce the swelling of the inside.

  I've got both humidifiers running wide open as usual.  Keep a chair pushed up to my bed that has water and an empty water bottle to spit in, along with the biotene. I'll be up and down through the night spitting, drinking and warding off the pain of waking up with a dry mouth and throat. Panella was quick to explain that the dry mouth was one of the worse side effects often overlooked when doctors or people tell about their experience. It is one of the worse side effects there are. This isn't a I'm thirsty dryness, it is an extremely painful dryness. Usually it isn't lasting but for some, it never goes away. I pray that it will not be permanent. Since I've lost most of my muscle I can see the damage and scars from my shoulder surgery. It's kinda freaky seeing how much difference there is between the two arms. Now I know why my left hand stays numb and my arm only works in certain ways. The muscles that had developed to compensate for the damage are wasted and fat that was around it.     

  I've had a lot of fatigue this week going in and out of it. For the first time in a while some depression. I still get these nervous jerks, muscle twitch, or whatever you call it. My body is beginning to break out again like it did with the last chemo and it's getting hard to tell the break out from the Non Hodgkin's Lymphoma patches. I drove to the office for the first time yesterday but probably won't do that again for a while. These sudden sleepy spells comes over me and then there are sometimes double vision. I've learned mostly how to deal with the double vision, I've had that hit over the last 5 years so that I have a lot of practice at getting through them. We've never quite yet figured out where that comes from.

  I can see and feel my threat of not waking, similar to what happen to my father, just as he knew it. That is why I try and make sure that my last words are kind and I tell those I'm talking with I love you every night. I end my conversations with my kids and parents with I love you. I've come to realize the meaning of what my great grandmother use to say about not letting the sun set down on you with hard feelings. To always make peace before you go to bed, and never go to bed angry. Thing is, that holds true for all of us. The difference is that I have a physical condition that make that very real and reminds me, but the sad truth is that we are all subject to not having tomorrow to make peace, to not make amends, to not say what we needed to say. Hopefully we all go to bed and end our conversations with family and loved ones with I love you, just in case tomorrow never comes.        

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