Quick report

Hello! Just a quick report from our G'ville visit yesterday. Glenn's labs, at least the ones that were ready by the time we left, were not much different. His disease levels are up again, after going down a little last time we were there, but no treatment is necessary.  We will hear this week about other labs. Poor Glenn had to get 6 (SIX!) shots yesterday for his final immunizations. (When a person has a stem cell transplant, he has to start all over with immunizations since all the immunities were wiped out with the transplant). He was a brave boy though, considering how much he hates needles. So far he hasn't had any effects from them that might happen after immunizations. Let's hope he doesn't, because he has his customer service workshop tomorrow and has to be on top of his game. If we get any negative news from the rest of his labs I'll post it, otherwise, ttfn.

No news is good news, again

Oh My Goodness!!! Has it really been that long since I made an entry???  Well, just know that Glenn has  still been stable, for the most part, all this time. His blood pressure runs high despite being on 5 medications for it. The Nephrologist started Glenn  on a sixth one, but that one only lasted a week before Glenn stopped taking  it. It caused him to gain 10 lbs of  fluid in one week, and he didn't feel good on it. Next the Dr. increased the dosage to double of one of his 5 meds, and that just wiped him out totally; he slept most of the time and felt totally drained. So we made the decision to cut that dose a little and it seems to be working, at least as far as how he is feeling. So far his bp is ok, but seems like it starts to creep up again. I'll let you know how that turns out.
We were planning a 19 day trip out West to see the Grand Canyon and visit relatives and friends, but last week Glenn said that he didn't think he was up to driving for that long of a time. So we have cancelled those plans and are tossing around ideas for a few smaller trips. No solid plans for anything yet.
This week is a full week for us. Today Glenn had several meetings for different things; tomorrow a clinic appt for him, (and Dr. appt for me); Wednesday is a trip to G'ville for a check on his lab values and particularly to check on his LCDD level; Thursday more meetings, and Friday he has a workshop/seminar (on customer service) which he is very excited about. (And I  also have an eye Dr. appt, using my new eligibility for Medicare, maybe, if the problem qualifies as a medical problem; yes, that means I turn 65 next week).
So all that said, Glenn is doing pretty well, all things considered. I will let you know how the trip to G'ville goes and what we find out.

Rolling along (or maybe writing along would be more appropriate.)

We went to G'ville yesterday and Glenn's disease numbers were about the same, a little lower. So no treatment for now. Yeah! Glenn continues to feel well and is very busy with the seminar he is hosting next week. His mind is constantly going, for which he is very grateful. After his stem cell transplant and during his chemo treatment the ideas stopped coming which disappointed him. But he's back to full speed ahead.
We are just going to Dr. appointments about every week or so, and going about our (retired) lives now.
He has finished his political/fiction book but it hasn't gone to the publisher yet. He is working on the second volume of "The Fine Art of Driving Customers Away" and there is a never ending pool of examples to write about for that one. And if you have any examples that he could use he welcomes your input. Just go to: glenn@glennboyles.com and leave him your message. He also takes examples of surprisingly good examples of good customer service. He would probably say that any good example of good customer service is surprising these days. ;-)
TTFN

Just more of the same

Ain't nothin happening here. (Except a lot of rain today). Just taking it day by day, which is what God is trying to drill into my thick skull to do. That lesson is continuing. But this blog is not supposed to be about me, is it. Glenn continues to keep busy with writing his books, setting up another seminar for August, and sharing his views in general on facebook. Dialysis is going routinely.  So I guess that's all I have to report. Just checking in to let you know what's happening and not happening.

Abrupt left turn

Say What????? The Dr. called yesterday to say that the numbers from the bone marrow biopsy are such that he wants to hold off on the chemo and monitor the numbers of the disease. I am soooo confused. The more I learn about this disease the more I see that it is not to be understood. It becomes more of a mystery the more I learn about it. My logical reaction should be to be joyful about this news. But in reality, I am totally perplexed. The numbers of the disease have definitely gone up, which is bad, but it doesn't need to be treated yet. There was no hint of a question from the Dr. last week when he said that we need to begin treatment. If there had been, I don't think it would bother me so much , but he was very direct and positive when he said we need to start treatment again.
Glenn is fine with this news. He was dreading the steroids and their effects. And I don't blame him for that. Those drugs can do evil things to the body, while they work to do good. I hate that I am not happy with/for him, but I am just so frustrated with this thing. I did ask God for deeper faith  last week, and I KNOW this is a direct answer, or beginning of an answer, for me, anyway. I think he is telling me that I don't need to be able to predict the course of this thing and, of course, let him do what he will do, and go with that. So now, I need the peace that I asked for when I asked for deeper faith.

Being reminded

"Now listen, you who say, 'Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.' Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, 'If it is the Lord's will, we will live and do this or that.' " James 4:13-15

Here we go again

Hello all, New updates here. We went to G'ville for Glenn's regular check on his labs. His platelet count remains in the low area, (46,000 with normal being 150,000 to 200,000). Nothing new there. His anemia seems to be stable with the shot he gets every week for it. But is seems that the numbers for his disease are on an upward trend, enough so that the Dr. wants to start chemo treatment again. We go back to G'ville tomorrow for Glenn to have a bone marrow biopsy to determine what the course of treatment will be. We should have the results by Friday so we can know what we're looking at. He will not be hospitalized for either the biopsy or the treatment and it's not going to be another stem cell transplant, but some combination of chemo and steroids. We don't really know what the effects will be on him. Just have to wait and see. It kind of took the wind out Glenn's sails because he has been doing so well. The disease doesn't really make him feel bad, at least not so far. What was making him feel bad, besides the chemo, was the effects of the kidney failure. But since he's been on dialysis he's felt much better. Really, though, we expected this would happen sooner or later because the disease isn't curable, but the goal is to manage it so that it stays in remission for a period of time and doesn't affect other organs. So that's what we'll be working for now with the new round of treatment. 

 This kind of puts a big question mark on what he will be able to do while on the treatment, like will he be able to do more seminars, and other things he has planned relating to customer service. Also we are wondering how this will affect our trip out west in October. We are back to day-to-day living. We're not complaining at all, just having to readjust our thinking of expectations.

You all are such a comfort to us, knowing that you are following his progress with prayer and concern. I will not stop telling you all how much we appreciate you and your love and concern shown to us. So you just need to get used to that! What would we do without you all, I don't know.  <3