Funny, last week I actually was feeling a little guilty with the SS Disability and all- something about the Irish work ethic...Lazy bum- get out there and do something...So to ease my conscious, my CLL and the symptoms of my skin irritability has returned with a vengeance.
I had spoken to Margaret at Dr. Byrd's office last week- she was checking on me- I told her all was well, and that I felt great. Then over the weekend it started, deja vu all over again. I cannot sleep at night in my bed- I have this feeling of “hives” on my face when I lay down- so I sleep in my chair- my ankles are swollen; the skin eruptions are back and I have the lymph node- I call it the mother node- in my thigh that is about 2 ½ inches long and hurts like heck when I am not popping pain pills.
I am waiting for a trial program to open at OSU- Cal 101- that may be a way to calm down my lymph nodes so I can try for a Bone Marrow Transplant again... I seem to have a form of CLL that does not respond well to the traditional methods of treatment.
I spoke this morning to the St James Resort staff (OSU James Cancer Center) -I like to think of them as my concierge- so they will decide if I should go back on the Dex or try something else... Dexamethosone- a Steroid that makes me feel "human", and sometimes a bit more. I was on it for about six months last year, but it can have some "harmful effects." See my previous post on "whack a Mole".
Sorry, if I sound like a whiner- but lack of sleep does that to me,or at least that is something I can blame. I know there are many people out there who suffer more severe CLL symptoms then me. So I will remain thankful for the fact that God does not give me more than I can handle—and if he does, he provides some “help” along the way...
Positive notes: The grand daughters are back in school again... that will give Denise some time to relax, and break up the day a bit... Last week, we took them to St Pete Beach for a couple days--- they are really great travelers. I really am glad they are here.
Waiting for the St James Team to call back..
God Bless,
Can't believe the kids are already back in school. They are here, too. So summer is on its way out. Very sad.
ReplyDeleteI'm sorry to hear you're battling skin eruptions again, Randy. Hopefully the St James team will have a solution. And BTW, doesn't lack of sleep make most people whiny? I know it does me.
HI, Randy Sorry to hear that CLL is giving you so much trouble, you are in my prayers all the time... That is a Nice Picture of You and Denise. I Love You with all my heart! KIM
ReplyDeleteI'm sorry that the skin eruptions have returned. When Tom's legs were covered in them, he also had "mother nodes" on both upper inner thighs. At the time we didn't know what was causing them, but like you, we soon learned. When he is on steroids, the nodes and skin eruptions calm down.
ReplyDeleteNo one will ever accuse you of being a whiner.
Sure hope you can get into that trial at OSU.
Loved the picture - circa mid to late 70's? The style of clothes & hair reminds me of us back in the day.
We are keeping you in our prayers. Nancy & Tom