Just checking in with our peeps

You know things have been relatively quiet when I don't post for a while. To catch you up on the  past couple weeks, (if I can remember that far back), Glenn had his visit to the nephrology clinic and the dialysis is apparently doing what it's supposed to. He is scheduled for Sept 12 & 13 for training on the night time dialysis cycler, so he should be able to start doing that after his training. One thing it will help is when we have to go to G'ville or somewhere for the day, he won't have to be concerned about where and what time he can do a dialysis exchange, like we have to consider now. It's not really that big of a deal, but it would be a lot more convenient if he didn't have to plan for that during the day.

He has been feeling quite tired for the past week or so. I will be glad to find out what his labs are tomorrow when we go to G'ville. My guess is that he needs another unit or two of blood. That's just a guess, though. He also had a virus over the weekend, feeling achy with GI issues. He seems to be better now, but the tiredness is still there. Also, as a follow up about the blister-like spots on his leg: they have dried up and are almost gone now. Our best guess is that it was a bug bite of some kind.

As I mentioned earlier, we go to G'ville tomorrow, and Thursday he has an appointment in Tampa to evaluate his neck injury from the accident he had a couple months ago. So we are going to spend the night Wed. night somewhere between G'ville and Tampa. Not a good week to find an inexpensive hotel, since the RNC is going on there this week. Hopefully, we will avoid the riots, etc. while we are there. We could use some prayers about that, thanks. Thankfully,( hurricane) Isaac has left that area so we dodged that bullet. 

I'll fill you in on our Dr. visits later this week. 

a little boost for the blood

We did go to G'ville Wednesday and Glenn got a unit of blood because his blood count didn't go up in spite of getting the shot for it the week before. The Dr. also told us that the markers for his disease have gone up, not out of normal range yet, but it made a significant jump. Now we go back in 3 weeks to find out about chemo. Glenn's only regret is that while he has been feeling good these last few weeks we haven't been able to travel anywhere.  Tomorrow we go to the renal clinic to see how his dialysis has been doing. He has been maintaining his weight and fluid balance well so far. We hope for a good report from tomorrow's testing so he can start doing  night time dialysis and free up his day time to drive me more crazy. Oh, did I just say that? I mean, so we can do more things during the day time together and enjoy more time of being with each other, (insert sarcasm).  ;-)
He discovered something on one of his legs that is a little concerning. It looks like a cluster of little blisters, but he says it doesn't hurt or itch. If it itched or hurt I wouldn't be as concerned, but that really narrows the possibilities of what it could be. I'll keep you posted on that development, or clearing up.  ttfn

He survived

Got back from camping yesterday. It's a good thing Glenn didn't go; it wasn't for the faint of body strength/endurance. I thought I was going to get some rest and reflection there. Well, I did get the reflection each morning and evening at the devotionals, but the rest of the time wasn't rest, by any means. But it was all good in the end. I'll be happy to do it again next year.
Glenn survived his first solo visit to G'ville Wednesday. The Dr. told him he looked good and seemed to feel good. He wants him back in a week to check his blood work bc his counts were down and he may get a blood transfusion if it hasn't come up. Dr. M. doesn't know why that is happening since Glenn isn't on chemo. Something else obviously is going on. And he also goes back in a month to check other labs to determine if he will need to go back on chemo, depending on  what the underlying disease is doing.
He has been growing a beard for maybe a week or so. I don't like it, but he does get positive feedback from other people. He looks to me like a poor homeless man who was able to get a shower and some clean clothes. His days are filled with sleeping, facebooking, dialyzing, and writing his next book, (called "The Fine Art of Driving Customers Away", about bad customer service with a chapter on some good customer service). He's almost finished with it and his printer is itching to get his hands on it to print it and get it distributed. His next book will be political which is good bc he needs to get some of his frustrations and thoughts out, and to give me a rest from listening to it!
We go back to G'ville Wednesday and I'll fill you in on that visit then.   ttfn

More independence for Glenn

Glenn continues to feel much better. His dialysis 4 times a day is pretty routine for him. He hasn't been able to start the night time dialysis simply because the nurse who does the training is backed up with people to train. But soon it will be his turn. He actually has most of his hair grown back on his head and it's time to cut it. He had to  start changing his dressing on his tube because I went to help our daughter out with an urgent issue a couple weeks ago. Now he does it all on his own. :-)  He has made remarkable progress with that. This week he will be home alone for almost 4 days because I am going on a camping trip with some friends from church. He was signed up to go, but he started dialysis since we signed up for the trip. I'm having mixed feelings about going, but I'm going anyway. He will make his first trip to G'ville alone while I'm gone. I told him to put his phone on speaker and let me hear everything the Dr. says because when I get the information from him, it's never quite what the Dr. has said. I try to take good notes whenever we talk to any of the Dr.s.  I don't like not being there for his appointment but it's on the first day of the camping trip and he feels fine about going without me. I'll give you a report of what happens at his appointment on the other side of the camping trip.

Happy Birthday, Glenn

Today is Glenn's 61st birthday. He had a wonderful day. Our daughter AND one of our sons, (Joey) came to church with us today and took us out to lunch afterward. They came home with us for a while and Joey cleaned Glenn's gun for him. Our other son, Andy, came over and took us over to Glenn's sister's so we could go for a ride in their boat. He LOVES riding in boats. Oh, and yesterday he got to be on the radio, Flighttime Radio. He really enjoyed that a lot, too. He's tired but very content now.
He continues to feel better, although he said he hits a wall and realizes that he's not completely back to wellness yet. But he's happy for what health he has at this point. And he is totally amazed that he has made it to 61. He wasn't expecting to make it much past 35 the way he treated his body when he was younger, and then not past a year, with his diagnosis. I think he will be surprised how many more years he will get to enjoy.

Uneventful days continue

Hello all, Things continue to be pretty uneventful here. Glenn has gotten used to doing his dialysis. Tomorrow we go to the (dialysis) clinic for a check up and we're hoping he will be trained for the night time dialysis. He is feeling pretty good over all. His weight has stayed pretty much level at a low point, but he looks like he has  a little more muscle than he did two weeks ago. He was happy that he was able to go to church two Sundays in a row. This past Sunday he even wore regular dress pants, with the shirt tucked in and a belt on! That's the first time in many months that he's been able to do that comfortably. We are still two and a half weeks away from his appt in G'ville when we will find out if he will have to start on chemo again. We actually miss that "community"  and seeing everyone there. I've heard people say that they become like family; well I'm here to attest to that. We might just make an appt to have his labs done just to make sure everything is ok, (and to see everyone ;-)  ). His "port" that is used for IV access is supposed to be flushed at least every two or three weeks anyway. We won't let anyone here touch it since our experiences in the ER and hospital stay. They don't know what to do with it and it requires certain sterile care because it is a direct access to a major artery and infection in it would be a serious thing.
So, anyway, that's about all there is to report.  A much welcomed boring period for us.

Lull

OOOOOHHH, I hate it when that happens! Some how what I just entered erased! I wish I knew what button I push that does that. Any ideas anyone?

Well, as I said in the last entry, things would probably be pretty uneventful for a while, and it has been pretty much that. Glenn has gotten over the shock of doing dialysis and the process has become pretty routine for him. He still won't look at the site of the tube coming out of his stomach when it is uncovered. I told him we would take it one step at a time. Last night was the first step: he didn't hold the pillow up over his eyes when I changed the dressing. He said he watched almost all of it except when the dressing was off. He knows he has to be able to look at the site if he wants to take a shower. He has been given the go-ahead to take a shower, but that's the one thing that holds him back. It's a good incentive for him to make himself be able to look at the site.

He found out that the reason he was so skinny and was so drained was that he actually was drained--too much. He was dehydrated from taking so much fluid off. There are 3 (actually 4) strengths of solution to use  and he was using the strongest for every exchange so he was taking off too much fluid. (Didn't I say that? But, nooo, he had to hear it from a professional nurse.) So he has gotten more balanced and he's feeling better and adding a few pounds on now. He's hoping that soon he can start doing the nighttime dialysis and won't have to be doing exchanges 4 times a day. 

The oncologist is gone on a month vacation so we don't see him for a few more weeks. We will know at that time if he is going to start Glenn on chemo again. He will check some of his lab levels and see what they have done to determine that. So for now, Glenn's hair is growing back in and he's feeling fairly well. He has recovered from the soreness of the surgery and is moving around well. He still "needs" his nightly foot rubs. (I'm just too good to him.) It's nice to have a lull between stressful events, to catch our breath. TTFN.