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.

One week post-onset of dialysis

You wouldn't believe how skinny Glenn is now. He lost at least 25 lbs. of water in a week from dialysis,  which is really too much too fast. It has really taken a lot of energy out of him. And with his abdomen being full all the time he hasn't been able to eat as much as he used to. I wish I knew how to post pictures on here so you could see. His arms and legs are like skin and bone. His abdomen is only big because he has 2 liters of extra fluid in it all the time. We were very grateful that the nephrologist told him he could cut down to infusing 2 liters instead of 2.5. That last 500cc was extremely uncomfortable and caused him pains. He is feeling better after each exchange (of fluids) now.
We had 2 of the 3 kids here for Father's Day, and one of them, our daughter, fixed a wonderful dinner for all four of us. And our other son called to wish him a happy Father's Day. He had a nice day with them.
Today we went to G'ville for his usual visit. Long story short, the Dr. decided to wait for 6 more weeks to start Glenn on chemo again. (I think we would have gone back sooner but the Dr. is going to his home country of Israel for a month). He felt like Glenn's numbers are pretty good and he will check the "markers" when we go back to see if anything has changed. The markers are the lab values used to assess the status of his disease. His blood counts were good today, but his chemistry, specifically his potassium, was very low so he got some by IV. His blood pressure has dropped quite a bit and he can hold off on his blood pressure meds for a while and we will monitor it until we go back to the nephrologist in a couple weeks. Hopefully we will just be in a holding pattern for the next few weeks while he gets the dialysis under control. And hopefully he will be on the all night dialysis by the time we go back to G'ville. He had to do a fluid exchange while  we were there today, which is the process of his dialysis. He has to do it 4 times a day and we were there quite a while so we had brought along his supplies to do an exchange. Worked out well because they gave him a room with a bed so he could lay down for a while, since he was feeling really drained, (no pun intended!)
So that's where we are on this Wednesday, the 20th of June. Hopefully the next entries here will be very  boring and unevent-filled.

A new era

I am so sorry it's been so long. I thought I had made an entry last week when Glenn  saw the nephrologist and oncologist. Sorry.
The neph. basically said it's time for dialysis. We'll be seeing him once a month now. The oncologist was going to start Glenn on a maintenance chemo schedule but Glenn wasn't feeling well that day so he decided to wait a couple weeks and give him some more time to heal from the surgery. So we go back in a week to start on that. It will be pills every other day. I'm curious/concerned to see what kind of effect this new chemo will have on him. It's good he's had this time off of chemo for a while. The oncologist gave us a good report of the bone marrow biopsy. He says that Glenn is close to remission. One of the numbers needs to come down some more. Oh, I should also tell you that the oncologist said that if Glenn can go into remission and stay that way he can be eligible for a kidney transplant. That's the first time he's ever given Glenn hope for a transplant. The disease he has would attack a new kidney so that's why he hasn't been eligible for a transplant until now. Well, not now, but there's hope for that now.
Today Glenn had his first peritoneal dialysis training. He had one cycle. It is basically filling the abdomen with a fluid that will draw out the waste in the blood that the kidneys can't now. That stays in for a few hours, then he empties that and fills again. Right now he will be doing that 4 times a day. After about a month he will be able to do night dialysis where a machine does it for him while he sleeps. That way he has his days open. We are looking forward to when it starts helping him feel better. I don't know, yet, what kind of effect the dialysis will have on the chemo, or the chemo on dialysis. Tomorrow we go back again for more training, and again the next day. After that, we are on our own. Glenn was extremely apprehensive about today, understandably. But he did real well and did all the steps the nurse showed him to do. I was quite surprised because I thought he would  want me to learn it and eventually teach him, but the nurse gave the instructions directly to him and he took it on. The only thing that really bothers him still is having that tube sticking out of his abdomen. Doing the procedure didn't seem to bother him. He hasn't been able to take a real shower since the surgery, but in about a week or so he will get to again. The surgery sites have to heal completely first.
Going through today really wore us both out. Glenn's was mostly from being so tense about dialysis starting today. Mine was probably from being anxious for him. And there was a lot of learning we had to do and that in itself is exhausting. All that is to say that I'm going to bed now!