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

Status stable

Hello folks, Again, the silence is because there hasn't been much happening in the way of health problems with Glenn. His blood counts have been the same, he's not as anemic, his platelets  are still inexpicably low, and the numbers for his disease are a little up, but that's what they've been doing, up and down but not enough to be concerned about right now. So I guess we can blame his being tired on dialysis.
He has been promoting his second book, "The Fine Art of Driving Customers Away". (You can purchase it on Amazon for $10 plus shipping.) He had a book signing a couple weeks ago and will have another one here at our community center in June. He also has organized a seminar for business people with five different speakers to speak on different aspects of business.  He's really pumped about that. It is on May 30 here in Jax. If anyone is interested in more information you can go to  www.primeprofitability.com. He would be very encouraged for some of you to come to the seminar. When you sign up, mention my name and you'll get....um...I'll think of something.
We are more and more encouraged about the trip happening that I told you about in the last entry. We want to take a trip to the Grand Canyon and to Texas to visit family and friends. The RV part doesn't look like it will happen, but we still have a good chance of being able to go. Prayers would be greatly appreciated for that to happen. Thanks.
Until next time.....

A slight jog in the routine...

Hello all you followers of Glenn's blog.  The silence on here means it's been very routine with our lives. Glenn's dialysis has been going well, although this morning the cycler "broke" before it was done with the final cycle. There is  support tech  for when things like that happen. He just calls the number and tells them what's going on and they can direct him as to what to do. This morning the support person said he was ordering another cycler and it should be here tomorrow. In the mean time Glenn has been doing the manual exchanges today that he used to do before he started on the cycler. He forgot a couple steps the first time he did a manual exchange this morning, one of which was to clear out the air in the tubing before he hooked up. That has resulted in pain in his shoulder, the same as you might get during surgery; an air pocket forms inside and travels up to the shoulder where for some reason it causes pain. It may take a day or two  for it to resolve, hopefully not any longer than that. It seems to be quite painful. The heating pad helps,and moving around and standing up aggravate it. The other thing he forgot to do is to heat the bag of  fluid  that goes into his abdomen with a heating pad or else it causes abdominal pain. That pain went away in an hour or so, with the help of the heating pad on his stomach. Poor guy, this hasn't been a good day for him. On the positive side, I think we've got his blood pressure under control finally with the right combination of 5 different blood pressure drugs.
 He seems to be getting more and more tired lately. We go to the local oncologist this Wednesday and will be able to find out what his blood counts are doing. They draw it every time he goes and we get the results within an hour. I don't like going so long between blood tests and not knowing what it's doing. We also go to G'ville next Wednesday to see how the disease is doing. His platelets continue to be low with no explanation  for it. (Platelets control blood coagulation, and when it is low there is a higher risk of bleeding.)
We have been trying to figure a way to go RVing out west to the Grand Canyon and to Texas to visit. So far it's our of our reach. But I'm asking God to work that out. He hears, so we'll see what his answer is. Glenn has wanted to go to the Grand Canyon while he is still able, and we both have wanted to go RVing. That's actually the least complicated way for us to go anyway because of his having to do dialysis, having to bring all the supplies along. Unfortunately it's not the cheapest way. But I strongly believe that God will make it happen. I'll keep you posted on that.

A passing era

My sister reminded me today that not all of you are friends with me on fb, so I should probably fill those of you in that category in on recent events.
Last week, Glenn's 95 year old mother, Martha, passed away after living with Alzheimer's disease for about 10 or so years. Her body just gave up. We were so glad for her to enter her rest, although on this side of it, we are missing her a lot, all of us. We had many wonderful years with her, since she lived with us for 23 years, all the years of our kids' growing up. We moved in together when Andy was 8 months old, she moved with us wherever we moved, and she went into a nursing home the summer that Anne-Marie graduated from high school. The kids' lives are so much more enriched for having their grandma live with them and help them grow up. She was one of the three constants in their lives, and they are missing her now as much as Glenn and I are. For Glenn, Mom is irreplaceable. For me, she made it possible to be able to do things that without her I couldn't have. We couldn't discuss our  finances in her presence because if we did, she would offer us all the money she had. As I eluded to at her funeral, she was without a doubt "The Wind Beneath My Wings", in my shadow making me look good. For the kids growing up, they loved to go into Grandma's room with her, shut the door and do whatever grandmas and grandkids do together. I was a little jealous of the relationship she had with them.When the Grandma they knew faded away, it was too hard for them to go visit her and see her not being herself. It's still hard for us to talk about her in the past tense. But so happy for her that she has laid down this weary life of hers, having fought the battle and won.

As far as Glenn's stuff: the oncologist here said he can't figure out why Glenn's platelets are staying down. He doesn't fit the typical reasons for platelets to be low. So he said he has to just shrug his shoulders and say, "I don't know." I guess we just wait and see if anything happens. I punched him in the arm the other day and he didn't bleed or get a bruise, so that's a good sign. (He deserved that punch, by the way.) The pulmonologist in G'ville said the nodules that were on Glenn's lungs are not there anymore, and we don't have to see him again unless something else comes up. One up for God! And since we won't see the oncologist in G'ville for several more weeks, there is nothing to report there. As  far as the kidneys and dialysis, it's going well, although lately his legs have been swelling, and he may have to add a short dialysis once during the day. And the nephrologist changed one of the blood pressure meds, and started Glenn on another one, a fifth one. His bp is ok,  but not where the Dr. would like to see it. All in all, he is doing well enough that I let him drive places by himself.  (Yes, I get the reigns!)
So now you are all updated on Glenn's stuff.

















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Just rolling along

Since the last entry, Glenn has been doing well. He had some moles shaved off and biopsied and one was basal cell so that one was cut out. He goes Monday for the six stitches to be removed. He was such a brave boy, I took him for ice cream again.

Dialysis is going well. His labs stay in normal ranges. It has become pretty routine for him now to get set up on the "cycler", which is the machine that does the exchanges for him for 9 hours during the night.  He sleeps well with that going on with hardly any discomfort. It has made planning activities during the day so much easier than when he was doing it manually 4 times during the day. He can always go back to that at times if we want to go somewhere overnight and don't want to take the cycler with us.

At his 6 week check up in G'ville this week, all his blood work had good results. Even the Kappa Light Chain, the disease in his blood, had gone down some. The Dr. was pleased with  how Glenn is doing. He said we could make the next appointment for 3 months, but we miss the crew there so he said we could make it for 10 weeks. We still don't have an answer to why his platelets stay so low, but the blood cancer group here in town is doing the follow up on that. I guess if it's not cancer, the Dr. in G'ville doesn't deal with it.

We had three Dr. appointments last week, so I was thinking we had a clear week next week, but it turns out he has 4 appointments next week. They are all pretty much follow ups: Monday the stitches from the mole under his nose come out, Wednesday he goes to the local blood cancer Dr.,  and he gets labs done at the renal clinic, and Thursday he has an appointment with the pulmonologist in G'ville to check the nodules that showed up on his lungs when he was being worked up for the stem cell transplant. He will have to have those checked I think every six months to make sure they aren't changing. 

So, prayfully all is stable for a while, barring anything rogue happening, (like that TIA a few weeks ago).