Tuesday, June 12, 2013
ANOTHER STEP BACK
So the tryout of clear foods didn't go so well. I'm back on NPO for a while until they adjust some of the meds and see what happens. Really not what I wanted to hear. It's been almost a month now and things aren't getting much better. I feel OK except for being so tired. And I'm frustrated because there is nothing I can do to help the situation. I do what I am told, I exercise, I try to keep my spirits up but none of that really pushes the disease.
So they are adjusting the way I get steroids and making so other tweaks. They put me on a testosterone patch to help with the weakness and anxiety.
Yeah it seems I can't handle the stress as well as I had thought that I could. You've read some about that. I met with the psychiatrist today. We had a good talk and she is going to prescribe some anti-anxiety medicine for me. We'll see how that goes. It's certainly worth a shot. I really wish I didn't have to go there but I think I need something to get me by for a while. At least until I can get some good news. Something without a caveat. Something positive that leads to the end of this tunnel.
In the meantime I'll do what I can do which is mostly wait. Stay positive and wait for some good news. I'll stay positive and not worry as best as I possibly can but the waiting and the uncertainty are really tough opponents.
Oh yeah, one more thing. My right arm has the PIC line in it. Basically that is a long needle inserted in your arm that feeds close to your heart. At the outside end there are three places to insert IV's. That is a very good thing because otherwise all those needles would have to be in your arm directly and that is just not possible. We'll for whatever reason the right arm has become quite swollen, a lot due to the steroids. So sometime this afternoon they will remove the line and place a new one in my left arm. This will be my third PIC. They first installation was textbook perfect. The second was not so perfect but has worked fine. I'm not terribly nervous about the third but it is another chance for infection so I'm not jumping for joy. It also means the things like tray tables around the bed get reversed because now all the IV lines are on the other side of the bed. The nurses computer is wall mounted so it won't be moving. Should be interesting to see how this little dance works out.
The one sort of positive note is that Dr. S says it is still possible that I could be out in 3-4 weeks. But you can tell he knows that is probably optimistic. On the other hand it's all odds, so why not three weeks.
Boone
6 comments:
Glad you are being as positive as you can. I know it is a long wait, but many many many people are praying for you. The miles are very encouraging too. I hope you can look at it again soon. Stella sent your her list of miles. It was so neat to see. I hope you can open it. Looking forward to your full recovery.
D
Sorry to hear eating didn't work out yet, Boone. Hopefully that can change soon, and that 3 week leaving thing will work out, too. Are you able to go outside any? (although if it's as hot and muggy in Nashville as here in Birmingham this week, you might not want to!)
My brother is going through the terrible chemo-related mouth sores-- unable to eat anything, forcing down a little water and some Ensure. This is a tough road.
I read an article about something called Photopheresis as a treatment option for GVHD. It sounds pricey but interesting, didn't know but that you might want to mention it to your doctor.
Tell Pauline hi. We are thinking of y'all a lot.
Hang in there man. I know you are frustrated, and we are all certainly frustrated for you. But it seems like you have a great attitude, even though you probably don't feel that way a lot. Just keep on keeping on, stay positive and do the best you can. Try not to worry too much and know we pray for and think of you constantly. Tell Pauline we said hello and I will talk to you soon.
-B
Sucks about the new pick. Figured that was going to happen.
Jeri, I read recently that melatonin really helps with chemo side effects esp. mouth sores, but who knows if his doc will allow it.
Hoping David will come with us tonight, but he is going to Bonnaroo tomorrow so I am not sure.
Three weeks it is, then. You can do this. Sending lots of positive vibes your way.
Praying for you! I am so touched by yours and Pauline's story. My brother had his stem cell transplant 16 days ago and my family has been through the paces. Have just learned to have so much compassion for others going through it.
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