Monday, January 20, 2014


   Well, it has officially been a day. Once again I have to play the bad guy with mom, she is being non compliant and that has her going down fast. I did find out tonight that the cancer area has grown quite a lot, but that is playing second string compared to her not sitting up, fluid is in both her lungs now and she is smothering. Mom says she thinks she is in A Fib, probably seems a lot like that. Anybody that has had a heart attack will never forget the smothering feeling, like an elephant sitting on your chest. I had a family member tell me that I should have sympathy, knowing what cancer and heart attack both feel like... and she said it pretty stern. Coming from a RN nurse I would expect things to be different but coming from this person I don't. I told her yes I did remember the fear, uncertainty, pain, and for that I have compassion. I have no sympathy though that I will show her because those who worked on me refused to show sympathy because they cared. I'll be the first to say that only God saves a person, but He uses people to work though usually to do it. Compassion heals while sympathy kills, it simply makes us looks good and feel better about ourselves.

  I got a call from Schindler's office today, the stuff to freeze the place off my back leaked out over the weekend and it will be 2 more weeks. They offered a referral to a Derm if I didn't want to wait, or I could reschedule with him. I asked to keep my appointment so he could look at my elbow. I don't think there is a lot that can be done, but I'd like to know what he thinks, broken or torn. (I'm leaning toward broken). I thought too that would give me the chance to talk with him about the Narcoleptic episodes and what might be after the other meds didn't work.

   Everything though happens for a reason, and I think this did. I asked Kim if she could refer me to a doctor at UT, a Dermatologist that a friend of mine, Sally, has used. She says he is good, though she still uses primarily Dr Zic at Vanderbilt. I like Zic but Nashville is a long ways to go. Sally has the same Non Hodgkin's Lymphoma, had it for longer than I have, plus she is a retired nurse. I have a lot of respect for her. We met on the Lymphoma Board many years ago. This is the first time in many a year that I have lost complete control of this stuff, and can't seem to get back in control. Almost over my whole body I burn or itch or hurt, Megan says it looks like I've been burnt. I have a NBUVB machine that years ago the insurance company bought me, well, we had to pay some too. Thing is, it can bring on Squamous Cell Carcinoma, which is what I had in my throat. I would prefer not to do that one again and this one there is no cure, only slow it down. I remember reading that it usually moves slow but can speed up. Well, I think we're in high gear, lol. If Schindler wants to see what this stuff looks like I'll show him, it is pretty rare. I think there is an ointment that can give some relief without too much collateral damage.         

uPDATE 1-20-2014

Well, it has been a while and a lot has happened. The medicine that is suppose to stop the Narcoleptic episodes hasn't worked out too well. They have curbed the events but not stopped them. I see no reason for continuing the meds, especially since its 90 dollars for a 30 day supply. I go tomorrow to Schindler to have a place removed from my back and will ask him about it. If he doesn't have any idea or want to get involved then I'll just wait for my next follow-up with Rathfoot. Also on the agenda with Schindler I will throw in getting him to look at my elbow, which also isn't healing as fast as I'd like, it may have broken or fractured. That is the same one that got heavily injured years ago at UPS and they told the doctor if he fixed it I would lose my job back then. It healed over the years but not well.

  Mom is still in the hospital, we took her last Friday to UT. Things are not looking well. Denise has ran me down there all but the initial taking of her, Charlie drove that day and I rode. Today I am of two minds. Denise said she would take me when she gets off but I would like to go earlier, which that means I drive. The cows need feeding today which Megan always helps me, or I help her, depending on perspective, lol. Denise said to take Megan to help me not have an episode, yet while that will help, nothing seems to stop them from happening. Usually I have a little warning with the extreme fatigue and stretching prior to an event. If I saw that coming I could pull off and wait for it to happen maybe. Short distances I know I can always get home, not so with long distances which seems to bring them on. Taking Megan would have no stopping effect on the event coming, and I would not want to be responsible for injuring her or anybody else.