12-27-2013

  Been a wild day. Me and Denise took mom to UT to have her blood checked and a follow-up with the Dr Hanna. Her blood was good for once, but chemo is off the table for her. She goes back in a couple of weeks, if the pain she is in will hold that long to see Dr Kilgore.

  Coming back, after we stopped and ate at Cracker Barrel, we got to see a good test of the meds for the narcoleptic type episodes. I was struggling but staying ahead of the curve. Right before the I-81/40 split it all changed. I looked over and Denise was screaming at me on my right, and I heard a horn sound from my left, one of those long blows. I jerked the car back over, I had drifted 1/2 way into the next lane. It didn't seem like I had went to sleep, more like just hit a time warp. I saw a black Mercedes front end coming back from almost completely being off the road... and that would have been the horn I heard. For the loudness and tone Denise was using, I'm glad all the windows were up, seemed the guy I edged off the road was pretty upset. Looked like a brown box had overturned inside his car, and boy did he look like he was pissed, screaming and pointing my way. It was a nice black Mercedes Coupe, way out of my price range. Nobody got hurt and no damage was done, thank God. Now I just gotta figure out that sign he gave after I looked over and smiled. Either he was grading my driving, or I was number one. :)    

12-25-2013

Well, this was suppose to say 

 

Merry Christmas

12-20-2013

Well mom wasn't able to do chemo and they said she would never be able to do it. They are trying to figure out an oral treatment that will not effect her bone marrow. Mom seemed in good spirits, Kilgore told her he wasn't giving up and would find something to help her. I actually believe he will too. Like most at UT I have seen they actually seem to care a great deal.

  I went today to Schindler and he gave me a remedy to try for Restless Leg Syndrome, so I'll pass that along. Iron, Magnesium, and Vit C each day. I have the Vit C pills and the Mag ones, can't swallow them though, but a friend told me to mix them with water and drink after crushing. He said I could flavor them but I don't have a lot of taste buds that work, so flavor isn't a problem. He prescribed me some ointment for the sores on my scalp, not sure what it is though, I haven't picked it up yet. A lady sent me an email from the Lymphoma Board, she said her message wouldn't go through. She told me what was prescribed to her. I'm not sure why exactly the Lymphoma Board partially works, though I was the only one for a minute. I have patches from head to toe so I figured it was the CTCL acting up again. I may have to go back to Vanderbilt, but first I'll fire up my NBUVB and do some treatments.

  The med for the narcoleptic episodes is about so-so. The first day led to headache and A Fib later on. The second day worked ok. Today, not so much, then again I haven't kissed the floor or swapped all the lanes while driving since I've been on it. That is some weird stuff, not like falling asleep, more like blacking out. Hopefully it will get me moving and I can lose some of this weight, 236 is just too much. I swore I was going to diet, and I am, just as soon as the holidays are over and left overs are gone. :)

  If I don't get to post between now and Christmas, Merry Christmas to all.       

12-17-2013

  Tomorrow I start the new med Projectile for the narcoleptic type episodes I've been having for a while now. Oddly enough, rather than medicate for sleep they give a med to stay awake during the day. Apparently the Sleep Apnea is what Rathfoot thinks maybe be causing these episodes.  A CPAP is out, my throat is too damaged to sustain the pressure so I have the nostril type thing that wraps around the ear. I take mom to UT tomorrow for her (hopefully) chemo, I say hopefully because so far the Lymphoma keeps her blood too low to do the chemo from her other cancer. Yesterday she bled, so tomorrow is up in the air. I just pray it isn't too late. Mom began going over some end details with me today. I listened this time, but I didn't want to.

  Last week when we went I freaked her out again by heading towards the floor. I was lucky that time, came to in time to avert another face first slumber, lol. Mom said I went limp and leaned backwards in the chair, then went forward and started down. I just remember thinking I'm tired a few time prior, and again thinking it, then it seemed I opened my eyes and caught myself. I joked and blew it off. Last time we went I done similar in the car, luckily nobody was close to us. I went across 3 lanes and into the emergency lane before waking. When I'm at home I can go hide and lay down for a while. It is embarrassing.

  I also have a shout out to the Lymphoma Board as to if these sores in my scalp are part of the Non Hodgkin's Lymphoma. I'm broken out all over with patches once again, so I know it is active, just not sure about those sores. My head is full of them and painful. Most of the patches just itch or burn, some hurt but nothing I can't deal with. My legs look and feel like they've been scalded, arms ain't much better. I really don't want to go back to Vanderbilt, it would be different if they could remiss it or cure it, but last I heard, they can't.

  On a plus note, now that I've went back to 10mg of Prednisone I'm sounding a lot less like Dart Vader when I breathe. Still have the Wolfman Jack voice though. :) I've also been able to swallow better.    

12-10-2013 Rathfoot Follow-Up

  We went for a follow-up with Dr Rathfoot today, me, Denise, and Megan. Megan stayed in the waiting area, watching the scope go up my nose and into my throat makes her sick. He had to scope me twice today, got a lot of mucus on the thing and had to retract it and try again. Rathfoot said he saw no evidence of cancer but my swelling was a lot worse, soooo... back to 10mg of Prednisone again. I tried to cut it in half to 5mg but it didn't quite work so well. We discussed the Prednisone causing me to to on the border of become Diabetic, but for now I will have to find another way to avoid that.

  He also looked at the thing on my back. He said it looked like an infected ingrown hair and the best way to fix it was to freeze it off. They don't do that there so Denise is going to check around. I wondered where the hair on my head was going. Apparently on my ears isn't the only relocation spot, lol. Rathfoot also said for the Insomnia he prescribed a medicine that gives energy and keeps me awake throughout the day, yet will not effect my heart. Denise approved the medicine so I trust her that she will not allow nothing to damage my heart again.

  We all shopped after that and eat at Taco Hell, I mean Bell. We have most of the Christmas stuff bought now. For two people that procrastinate we've done ok.

  Mom hasn't been able to take any of her chemo since the 2nd dose of a dose split into thirds, and now I worry. Her Lymphoma will not back off enough for her to treat the other cancer, the aggressive one. Charlie and Tina were taking her to her appointment Monday and she fell and broke her knee cap. She had surgery today on it. I've had a lingering cold for over a week and avoided mom, she hasn't the ability to fight off anything. I'll stay in, rest, and try and beat it so I can take her Friday when they once again try to treat her.