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.         

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