Thursday, October 3, 2013

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.

Monday, September 30, 2013

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.

Tuesday, August 6, 2013

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

Monday, July 15, 2013

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.

Friday, June 28, 2013

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.

Friday, June 21, 2013

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

Wednesday, June 19, 2013

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

Friday, May 17, 2013

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.....

Monday, April 29, 2013

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.

Tuesday, March 26, 2013

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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Saturday, March 2, 2013

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).

Saturday, February 9, 2013

TIA?

Hello all. (This will be new to some of you and repeat info for others of you since we are friends on facebook.) Glenn went the hospital Thursday night because he was having a severe headache, vision problems, and difficulty with his speech, along with the high blood pressure. Of course we suspected a stroke. The brain scan didn't show any signs of bleeding. He had an MRI last night to see if there is any hidden bleeding that the scan didn't show, but we don't know the results of that yet. The visual and communication symptoms didn't last more than 30-45 minutes. So far, the Dr.s are suggesting that it was either a TIA or a complex migraine.  He is also going to have an EEG. They don't do those on the weekends here so he might get released tomorrow and have it done in the office this week. I'm glad he is here for another night because the headaches and high blood pressure happen at night so as long as we're here it can be documented, but of course you know the body gets uncooperative at the wrong times and he doesn't have a headache tonight. Blood pressure is creeping up.( Is it bad for me to hope he gets a headache and high blood pressure tonight?) He has been feeling pretty well, especially after last night when he got a really good dose of Ativan IV so he could get through the MRI. I had gone home to get some things, but our daughter was with him, and she had some entertaining  stories to tell him about what he said and did while he was under the influence. :-)  And it lasted a long time, even into today. You know Ativan is his drug of choice so he was glad to get it, and he couldn't have gotten through the MRI with any less of a dose because he is claustrophobic and even then wanted to end the test early. He was able to finish probably because he was hallucinating and was able to be convinced to hang on a few minutes more.
I will probably give you an update in the next day or so. We are doing fine, although Thursday night was quite scary for us both. Thank you so much to those of you who already knew about all this and have been praying for us. You have to know that through your prayers God has been keeping us strong. He is always faithful.

Friday, February 1, 2013

Low platelets, high blood pressure and a new book out.

Friday, February 1st. Time flies, doesn't it?! And yet it drags when you don't want it to. Let's see, what's new to report? Well, not a whole lot. We went to the hematologist here in town who Glenn was seeing for a while  in tandem with the hematology/oncologist in G'ville and we had decided to stick with one, the one in G'ville. Anyway, we saw the local group today to see if they have any clue as to why Glenn's platelets stay down too low. The  Dr. we saw today really doesn't have a clue why. So that makes 3 so far (Dr.s who don't know why). He's running a blood test to see if it is ITP and if it is he can treat it. If it's not, we're back to the drawing board. I'll tell you what ITP is after I look it up and review it. I was reading about it the other day, but I don't retain anything that I read the first time, or the second time, for that matter. We also went to the Renal clinic today for Glenn's weekly shot for his anemia, and to talk to them about his blood pressure getting so high He is already on 3 meds for high blood pressure. Last night it was 189/86 at 6pm and 186/ 80 at 11:30. Last week he was prescribed some medicine to take when it gets too high. He took it at 6 but by 11:30 it was still high so he had to take another one. This morning his blood pressure was a very pleasant  131/74. But it is creeping up again. Along with the high bp is the headache. But hey, his LCDD levels are staying steady, so we have something to be positive about.  Actually, we are  quite pleased that he has been feeling as well as he has for the past few months. So these things aren't  urgent matters, just annoyances. (Speaking of annoyances, he continues to grow that beard. :-(  That's my feeling about it.)
It has been good hearing from some of you that you keep up with Glenn on this blog. We really do appreciate that you  want to keep up on what's going on with him. By the way, his second book has been published: "The Fine Art of Driving Customers Away". He will let everyone know who wants to buy it of when to order it on line so he can get it on the best-seller's list. If it gets high enough orders during any certain hour, it is named on the best-seller's list. He will set that date and time and let you know. Keep your eyes peeled for that info. Also, he is near the finish of his third book which is a fiction novel politically based. We'll let you know about that too, but that will be a few months away yet because of getting it done and edited and printed.
 ttfn  (That's ta-ta for now, for those of you who forgot or didn't know.)

Saturday, January 19, 2013

All is well

Hello all, thanks for your faithfulness in following Glenn's journey.
He had appointments at both the Dr's this week. Wednesday we went to G'ville to see the hematology/oncologist.  His labs are pretty much unchanged: blood counts are at a low but  safe level for him; platelets are still low but steady. We don't know what the results are of the LCDD. They will call and let us know when they get the results. Glenn goes back in 6 weeks. On a sad note, we lost one of the friends we met at the Hope Lodge where we stayed during Glenn's treatment. I just expected everyone we know well from there to just live on. It was such a surprise to have him go. He had a leukemia-type of disease. Treatments just didn't seem to do any good for him. I am so sad for his wife.
Thursday we went to the nephrologist. Really nothing significant to report. We did talk about the platelet situation and decided that we would go back to the hematologists Glenn saw here locally and see if they can identify the reason for it. I think they deal with other blood diseases as well as cancers so maybe they might have some ideas. 
The itching Glenn had been experiencing hasn't bothered him for a few days. Here's hoping it will stay away.
So unless there is something significant to report, you won't hear from me for a couple weeks. All is well. 

Wednesday, January 2, 2013

Post- Christmas report

We had a wonderful Christmas day that followed a fun event- filled month. Our day was filled and we were exhausted by the end of the day, but full physically and emotionally. We started our day with the kids and granddaughter coming over for breakfast. I got to play with Phoenix in "her room", as she calls the guest bedroom, (well, she is correct in saying it's her room because it has her toys and books and pictures and the quilt on the bed that she learned to say the word "star" on, one of her first words, because it has a lot of stars on it), and her little rocking chair. It was so good to get to spend time with her. Then we went to our oldest son's house for afternoon dinner and presents. His girlfriend's family was also there as well as our other two kids and Phoenix. That was such a fun day. We were packed in that house but that's what made it even more fun, I think. From there, we went to my sister's house for evening dinner. We got to take Phoenix with us there because it's been a long time since my sister has gotten to see her. We got to play tea party with her tea party set she got for Christmas. By the end of the night we were all tired and ready to go home and rest. But it was such a goooood day.
Glenn continues to do well. His main complaint right now is the phantom itching he has every night. It starts in  one place for a while then moves to other locations, and of course is very aggravating. It doesn't seem to happen during the day. We aren't sure what it is from because it could be from the kidney failure, or it could be from the blood disease he has. We go to G'ville in two weeks. Maybe they will have a clue as to what is causing it and what can be done for it. But other than that, he feels pretty good. We are still watching his platelet count. We'll get the results of the latest level in a day or two.
Hope you all had a fun and happy Christmas and New Year.