Monday, December 17, 2012

Nothin' happening but Christmas stuff

Like I told you, I would check in now and then to let you know there's nothing going on here. Glenn is doing well and enjoying the kids thinking he's Santa when he goes out in public with his bushy beard and his Santa hat on.We have been busy with Christmas events this month: Children's Christmas program at church, visited the winter land in St. Augustine, attended a beautiful Christmas concert and dinner some friends were a part of, a cookie exchange with some women from church, a dinner given for us residents at Cecil Pines, (our little community), "Thankmas" that our son and his girlfriend originated last year, a wonderful  and long anticipated wedding of the son of some friends, will be having Christmas dinner with Glenn's sisters and family this weekend, hoping to go caroling at a nursing home this week, and we'll be fixing breakfast Christmas morning for our kids and granddaughter when we will have our own family Christmas.
We don't go back to G'ville until after the first of the year. The nephrologist is checking Glenn's platelet count every week for a while to see what it's doing. So far it's still low but up a smidgen from the last time. And he gets shots every week to keep his red blood count up, (to fight off anemia). Dialysis is going well.
So Merry Christmas everyone and hopefully you won't hear from me until after Christmas.

Thursday, December 6, 2012

A week of medical appointments, but no solutions

Today was the last of four medical appointments this week. Monday, Glenn had a procedure to move the tip of the catheter in his abdomen to see if that would alleviate the pain he has on the initial drain of dialysis each night. The Dr. said it was positioned well and wasn't blocked so he didn't see the need to move it. We did find out that morning that Glenn's platelet count is still very low, but not until after the procedure was done. I think if they had know about the low platelets they probably wouldn't have done the procedure because of the high risk of bleeding. Tuesday, we went to the renal clinic for Glenn's appointment with the nephrologist. He still is stumped as to why Glenn is having blood in his drainage bag each morning after finishing the nightly dialysis. He was not pleased that the Dr. who did the procedure Monday didn't move the tip of the catheter anyway because it is clearly causing pain and probably being sucked up against something in the peritoneum and possibly irritating and causing the bleeding. He suggested that Glenn see the Dr. who did the catheter placement to see if he has any idea why the bleeding. That visit was scheduled for today. Wednesday we went to G'ville for his appointment with the oncologist. He also is at a loss as to why the platelets stay low. The bone marrow is producing adequate amounts, so it must be a problem with them being used up somehow. It's a mystery for now. But Glenn doesn't need to go back to G'ville for another six weeks. Today we saw the surgeon who did the catheter placement. His opinion is that the reason for the bleeding is the low platelets and warned us that Glenn needs to be very careful not to fall or have any injury because he could bleed easily and too much. He seemed sure that the oncologist would come up with a reason for the low platelets. He said those guys always do eventually figure those things out, (the hematologists).
So that was our busy week with medical stuff. This weekend we are going to two Christmas parties: one is a fancy dinner with the old folks here where we live, and the other is what our family started last year called "Thankmas". Last year Andy and his girlfriend had a turkey they wanted to fix so they came up with that idea. We didn't get to go last year but we do this year. It will include our family and Andy's girlfriend's family. Always fun and entertaining.
We don't have any appointments soon so I won't be on here unless something comes up. I'll just check in once in a while to let you know that there's nothing happening. 

Sunday, December 2, 2012

Working out the painful little detail.

Hello all, Hope your Thanksgiving was a good one. We had a full house with all three kids, significant others, and an extended family member. Love it!
Still pretty quiet here. Glenn's abdominal scan didn't answer the mystery about the blood in his drainage bag every day. One day there was a lot more than normal so we took it to the nurse at the clinic so she could see how much it was. Since then it has been what it normally has been. Tomorrow Glenn will have a simple procedure done at the hospital to move the tip of the catheter that is in the bottom of his abdomen that drains the fluid during his dialysis. With his initial drain each night it has been painful so hopefully repositioning it will alleviate the discomfort for him. We are also curious to see if it has any effect on the blood in the drainage. He some how acquired a "black eye" We were at breakfast Saturday with the kids, and Joey asked him what was wrong with his eye: it looked like there was a broken blood vessel on the inside corner of his eyelid, (but not the eye itself). Throughout the day it continued to spread across the eyelid like eyeliner would  look. This morning it was all the way across the eyelid and starting to move down a little below that. It doesn't hurt or itch, is not swollen. He doesn't even know it's there unless he looks in a mirror. We have NO CLUE how it got there. We haven't done anything about it because it doesn't bother him in any way and it isn't on the eyeball itself. We can have it looked at tomorrow when he is at the hospital.
This will be a week of medical appointments: he has the procedure tomorrow, nephrologist appt. Tuesday, and oncologist appt  Wednesday. Hopefully he will not have any problems arise from any of those. I'll report to you after all that takes place.

Friday, November 16, 2012

Closing in on Thanksgiving 2012

Hello everyone! We've had a quiet week, as you probably figured out by the silence on the blog. That hospital loaded Glenn up so well with blood and platelets that he has felt pretty good since then. He's been able to go to church and  wherever he wants to go. Not much else to report. He does have a scan scheduled for Monday to try to identify the source of the blood in the drainage bag every day when it is emptied. Of course, I will fill you in when we find out. Hope you all have a wonderful Thanksgiving. I am looking forward to having all the kids here plus a couple other guests. It's been a long time since we've had a good gathering for Thanksgiving. Family for holidays makes me happy. :-)

Tuesday, November 6, 2012

4th and final update

Glenn was discharged this afternoon. His red blood count is staying stable, his platelets aren't, so we will follow up with the Dr. in G'ville ASAP. We already voted last week so we got that done. Thanks again for all your prayers and encouragement.  :-)

Monday, November 5, 2012

# 3 update

Glenn has had no more bleeding, and the blood levels are staying steady. And if everything stays that way he may be discharged tomorrow. He feels fine and is just hoping everything stays stable.

Saturday, November 3, 2012

update # 2

Glenn is looking pinker today. He got a seventh unit of blood in the wee hours, plus a huge amount of platelets. The surgeon  ordered that in hopes that it would make the blood thicken up and stop bleeding. Today he still had some bleeding, but not as much. Still not slowed down enough to say it has stopped. At this point he isn't looking at surgery, we are going to continue to wait and see how it goes, or doesn't go, as the case may be.  ;-) The murse, (male nurse) had trouble getting blood out of Glenn's port to type for the unit of blood, and after a couple tries, he finally had to do a stick. All that, and getting the platelets, took all night, so we were up much of the night. So as you can imagine we are hoping for a better night of sleep tonight. Plus we get that extra hour, (thank you, God).
We have had several visitors this weekend which were so encouraging. Also got some calls from people checking on Glenn, (one at 6:30AM from a friend whose name will go unmentioned, but her name begins with P and ends with atti.) We feel so loved around the clock!  Glenn won't be going home tomorrow. We'll try for Monday.   tbc

Friday, November 2, 2012


Glenn had a colonoscopy and endoscopy today and the source of the bleeding is from diverticulosis, but the Dr didn't see a specific active bleeding sight at the time. He is still bleeding so he is having a scan of his abdomen right now to see if a specific source can be seen. He got another unit of blood today and a unit of platelets. We got the report of  last weeks bone marrow biopsy and the marrow is making blood cells and platelets the way it is supposed to, and the light chains are stable, not increasing any more. So we know that the low blood counts aren't a bone marrow issue. He is still feeling ok. We know we'll be here at least another day, and probably longer because they will want him to not bleed for at least 24 hours before they let him go....... tbc

Thursday, November 1, 2012

Breaking News

I need to catch you all up on what's been going on this week before I forget some of the details as they unfold. Glenn had his usual weekly appointment at the renal clinic Wed. for his shot that he gets to keep his blood count up. He was extremely tired that morning. When we got there we told the nurse and she took a blood sample to test it. We wouldn't know the results right away so they sent us home and they would call us with the results. They did call a little while after we got home and told us that his blood count was dangerously low and to get to the hospital right away. Actually they told us to call 911 and  we did, but when they came and assessed him, his vital signs were good and he refused an IV and they said they could have the rescue come but it would just basically be a ride to the hospital. So, against orders of the nurse at the clinic, we decided that I would drive him to the ER. We got right in because they had called ahead to let them know he was coming. After all the check in stuff, and recheck of his blood, they told us he would be admitted and that he would get two units of blood as soon as they could get it. All this time, he was feeling pretty good, but you know how you start to feel better when you go to the Dr.s office. He really was pretty weak. He was admitted , that was yesterday. He got the two units of blood. And the goal now is to find out why he is losing blood. Remember, he just got two units a week ago. And his blood count was lower this week than it was last week. He also got another unit today. The plan is to do a colonoscopy and endoscopy. He has been having some rectal bleeding for a couple weeks, though not a huge amount. Just consistently and he had an appointment with the GI Dr. for the afternoon after his visit to the nephro. clinic. Needless to say, we didn't make that appointment. But he did get a visit from that (GI) group today and tomorrow he will have those tests. I will keep you informed as I know something new. We are doing ok with all this, just taking it a day at a time.

Friday, October 26, 2012

Longer than expected visit

It was a little longer G'ville visit than we anticipated. Wednesday we left early so we could get to the appointment early, (they see patients as they come in, not necessarily by the appointment time.) We figure if there is a procedure to be done, they will have time to do it if we get there early. But the early plan didn't work as we had hoped. The car died half way there, so it took about an hour and a half to get the car towed and get a rental. So we got there at the scheduled time. The labs showed that Glenn's red blood cell count was critically low so he needed blood. But the Dr. also wanted to go ahead and do the bone marrow biopsy to see if he can find out why the counts stay low in spite of the shots Glenn gets weekly for it. We will get results from that in a week. By the time that was done and the blood was ready for transfusion there was only time to get one unit, so we had to go back yesterday for the second unit. On the way back home Wednesday night I was thinking there must be a way to be able to stay in town for the night so we wouldn't have to drive home and go right back the next morning. God heard me. I had posted on Facebook briefly about our trip to G'ville and an OLD friend who lives in G'ville answered and we all had lunch the second day after we were done at the clinic. He offered that if we were ever in a situation like that we could stay with them. Isn't God so GOOD?! And it was  so good to begin to get caught up again with him and his family.
As far as how the 2 units of blood have affected Glenn, he feels a little bit better, (he had been getting tired a lot and so we know now what that was caused by). He is having some other issues with bleeding so we have to look into that right away. Prayers certainly requested. I will let you all know when we find out the results of the biopsy and any other tests.

Sunday, October 14, 2012

Still stable

Just want to report to you all that there is nothing to report. :-) Glenn continues to feel pretty well and the night time dialysis is going smoothly. He got to be a guest host on the Flight Time radio show again yesterday, which, as you all know, is a favorite activity of his.
He has sent his second book to the publisher, and is working on his third book, which is a political fiction. The words are just POURING out of his mind. Surprise, surprises!
 He seems to have a little more energy than he did last week. He got another shot for his anemia and maybe that has made the difference. He's actually been going out to men's night with the guys from church, and we were able to go to out to a gathering of friends Friday night for dinner, and movie for the men and Mah Jongg for the ladies, and he didn't run out of steam. Our next Dr. appt is this coming Tuesday at the Renal Clinic here in Jax. and the following week we go to G'ville. Probably won't post again for a a little while until we have any new info to give you all. So ttfn.

Sunday, September 30, 2012

Enjoying relative "normal-ness" for a time.

Hello all you faithful glennschemoandstuff followers. It is comforting to know you are there keeping up with all this stuff.
Glenn had his appt in G'ville this past week with the oncologist. It looks like the markers that he is watching to follow the disease are up again and it's inevitable that Glenn will start some form of chemo again. We go back in a month and he will probably have another bone marrow biopsy to determine where exactly the disease is and what treatment to start. From the labs we have up to the end of August, it looks like the values are as high now as before he had the stem cell transplant. I really hadn't looked at the comparisons until now. His platelets continue to be very low, as well. We don't know what is causing that. His red blood cell count stays low, but that seems to be constant for dialysis people.
On the day that a person receives a stem cell transplant it is considered their birthday. We finally got that connection when we went to G'ville this past week. Because the immune system was completely wiped out from the transplant, Glenn is considered 16 months old, and had to begin his immunizations just  as a baby has to. So he got 4 (FOUR) shots at his appointment. His arm is still quite sore four days after the injections. Poor baby. I took him for ice cream afterwards because he was such a brave boy.
It is so good that he has this time of feeling pretty well in between treatments. It has been a nice reprieve. He has about another month of feeling well before it all starts again.  boo.

Monday, September 17, 2012

Night-time dialysis

I know I said in the last entry that I would update you on the rest of his labs. The P.A. called to give us a report and we asked her to fax it to us as well but the fax didn't go through and we haven't gotten around to calling back for them again. But from what she said everything concerning the LCDD is still trending up, but not in a dangerous range right now. We go back to see the Dr. in a week.
Glenn was finally able to get trained on the "cycler" machine to dialyze at night while he sleeps. He's on his fifth night now. He is still getting acquainted with the machine, but he likes not having to do it four times a day. With it being a new treatment, he was intimidated by it at first, but after the first time he used it, he has settled down about it for the most part. And he has a number he can call any time of the night for help which really helps lessen the anxiety. The first night neither one of us slept very well. But after that we've done pretty well sleeping.
He's had several days where he feels pretty good most of the day. He can get worn out if he tries to fit too much into his day. I think that's a result of the anemia. He's eating well, looks good, has a fairly good amount of energy and is comfortable with all the new additions to his body, ie the dialysis tube in his stomach, the fistula in his left arm, and the port in his right upper chest. I think he's in a good place right now. I told him now he can find ways to make my life easier!

Sunday, September 2, 2012

Report of Dr visits.

I can give you all a partial report on Wed.'s G'ville visit only because we have received partial results of Glenn's labs. His red blood count is still low, but not enough to need a transfusion. Most everything else is in a pretty good range. Of course his kidney function labs are  terrible, but that's to be expected since the kidneys are shot now. We are waiting for the Dr. to call us regarding the levels of the LCDD disease. They apparently take longer than a day to be done.
Today, for the first time in a long time, Glenn wore his shirt tucked in and a belt on. He hasn't felt comfortable with that until now because of the tube in his stomach that is at belt level. He looked like his old self, except that his hair came back darker since it has grown in.
Our trip to Tampa was pretty uneventful and the appointment took much less time than we had thought it would take. We wait now on the lawyer to do whatever he is supposed to do. We didn't see much indication there that a convention was going on, except for a small caravan of important looking vans coming out of the Weston Hotel parking garage which was next to the building we were in. And we ended up driving to Tampa and back that same day instead of spending Wed. night in a hotel. Worked out ok, but Glenn's dialysis schedule got all messed up and he missed an exchange that day, first time since he has started dialysis.  He lived without it for a long time so it won't hurt anything if  he misses now and then. (He does 4 exchanges a day.)
So, with the rest of the lab results: tbc (to be continued).

Tuesday, August 28, 2012

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. 

Sunday, August 12, 2012

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

Sunday, August 5, 2012

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

Monday, July 30, 2012

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.

Sunday, July 22, 2012

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.

Sunday, July 15, 2012

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.

Saturday, July 7, 2012


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.

Wednesday, June 20, 2012

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.

Tuesday, June 12, 2012

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!

Wednesday, May 30, 2012


As indicated by the long lapse of posts here, it has been a pretty quiet week. Glenn is slowly recovering from his surgery. He's tired of being tired and feeling sick. That should change soon when he can get out and about more. The oncologist called Saturday with some positive news. He is pleased with the numbers that the bone marrow biopsy showed. He's says there shouldn't be a need for a second stem cell transplant. He will start Glenn on chemo by mouth every other day when we go back to see him next Wednesday. We have a week off from driving to G'ville, although we probably will go this week anyway to get some prescriptions filled/refilled. The trip there is worth the savings we get from the prescriptions. Friday Glenn has an appointment  for instructions on care of the peritoneal catheter. We don't know when he will start dialysis but we go to the nephrologist next week as well, so we should know more then. I, for one, am thankful for a quiet week after the past two weeks of activity.

Wednesday, May 23, 2012

The deed is done.

Glenn finally had his surgery for the fistula and peritoneal dialysis catheter placement today. He's home now and is  pretty sore. It was a little rougher than we expected, but he's on the healing side of it now. This really is becoming reality now, that he will be on dialysis from now on, once it is all healed. I'm so sorry that he has to go through this. I never imagined he'd have a serious illness and have to go through all that he has so far, and will in the future. That aspect, (the future), will be determined by the results of the bone marrow biopsy.We will know how that is by the end of the week, I'm pretty sure. The oncologist said he would call us in a couple days when he gets a preliminary report back.
My brain is pretty much fried again so I'll say ttfn.

Tuesday, May 22, 2012

A new week, a new phase in life

Glenn was able to get his bone marrow biopsy done today, after having to cancel twice. We should find out how the Light Chain Deposition Disease is doing from the biopsy. The Dr. said he would call in a couple days to let us know. He got his drug of choice: Ativan. Funny side effect happened today after we got home. While he was sleeping off the Ativan, his toe nails turned different colors, as if they had been painted!  Strange.                                                             Tomorrow he has surgery to have the fistula and peritoneal dialysis catheter placed. He's moving on to a new phase in his life: peritoneal dialysis. That should start soon after the catheter is healed. The fistula is a back up if there is any trouble with the catheter. I'll fill you in on how the dialysis works at a later date when we learn how to do it. He has come to fully accept having to have dialysis and has a good attitude about it. He has come a loooonnnnngggg way with all this medical stuff being done to him. He was terrified of needles in the beginning. And now he can accept something that he absolutely did not want to have to do when this all began. He's a changed man, in many ways: retired, has much less hair, definitely unstressed, not so many ideas for new businesses but much more contemplative about life, definitely has greatly grown in his dependence on, and trust in, God. Many other ways as well. You all may think this is a terrible thing that's happening to him, but he and I see it as a great blessing because it has made him a better man and has brought much glory to God, which is the goal in whatever we do.
   "But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2Cor. 12:9-10

Saturday, May 19, 2012


Glenn was discharged from the hospital this evening. There was no reason for him to stay since the fever appears to be resolved and the surgeon won't be able to do the surgery (for the fistula) until at least Wednesday. We will call on Monday to schedule it. He is feeling fine, all things considered,and is now catching up on lost sleep. I plan to do the same.

day 4

We're still here in the hospital on day 4. I hesitate to give any info on what will be done next, because as sure as I say something it will change. The vascular surgeon saw Glenn this morning, the one who will place the fistula, and he said he couldn't do the surgery Monday because the schedule is packed, and he is off Tuesday so we're hoping for Wednesday. Which means that if the other 3 Dr.s have no reason to keep him, he MIGHT go home today. But don't quote me on that. We'll know when we are home if he is going home. And we'll know when he actually has the fistula in his arm when it's going to happen. And even which hospital he has it done at, for that matter.
The Dr.s are assuming that the temp that Glenn had Thursday night was what we thought it was from: the blood transfusion. He's been ok since then. He feels ok, and we went for a short walk around the unit, today. He looks pretty scruffy, though, since he hasn't shaved for several days, and his hair has thinned out a lot since he's been on the chemo. He says he looks like a sick old man. That's a pretty accurate description. If it didn't take me 8 hours to figure out how to get pictures on this site, I'd show you.
We're going to try to take a nap while it's quiet, so shhhhh. Thanks.

Thursday, May 17, 2012

Day 2

Day 2 of hospitalization has been busy  for Glenn. He's had several tests and is getting his second unit of blood right now.
His labs in the ER showed some possible heart involvement, but all the tests done since then haven't revealed any problems and the cardiologist doesn't see any reason to follow Glenn any more. There still has been no source found for the fever, everything has been clear. The infectious disease Dr. said that if his temp remained in the normal range she would stop the IV antibiotics and could release him from her care tomorrow. But this evening  his temp has started going up. We're hoping it is just a mild reaction to the blood transfusions.  The nephrologist says Glenn's kidney function is the same, so after discussion , we agreed for him to set up the surgery for the fistula here while Glenn is in the hospital, but it can only be done after the fever has been resolved. So I don't see him being released tomorrow.
The night nurse tonight said Glenn's color looks better from last night, since he has gotten the blood. I hadn't noticed his color being pale, I guess since I've been with him constantly and wouldn't notice a change. He is feeling ok, other than understandably being tired. Besides his health problems, he did lose two nights' sleep being in 2 ERs. As usual, if you talk to him on the phone you wouldn't notice any signs of him being sick from his voice. It's not that he's putting up a front, it's really how he feels and how he talks on the phone.
My brains are a little mushy and I don't know what else you all would like to know. So send me any questions you have on the comment section or e-mail me and I can fill you in.

Wednesday, May 16, 2012


Yesterday after we got home from the G'ville ER and  I got everything unpacked, Glenn took his temp and it was higher than it had been the previous day. So I called G'ville to find out  what we should do and we were told to go to our local ER. So guess what we did! We did what we were told this time. It was still crazy busy in the ER, but I had asked the PA in G'ville to call ahead and tell them that he needed to be seen right away. So we did have to wait a while but they understood the situation and got us into a  room as soon as they could.  We spent a second night in the ER and we were told early on that he would definitely be admitted. They ran several tests and started the IV antibiotics while we were there before we got to a room upstairs. So they are continuing to do many different tests to try to determine where there is infection. So far, no source has been found. His temp has gone down and he is feeling better but they will continue the IV antibiotics, though we don't know for how long. Unfortunately, for the second time we had to cancel the surgery for the fistula that was to take place tomorrow, and he really needs to get that done because his kidney function is at dialysis level now. He may end up having to have a "central line" placed to do the dialysis before the fistula can be placed and healed. The concern there is that those can easily be introduced to infection which can quickly lead to sepsis. But it may have to be the route we use until a fistula can be placed and matured. This is where God shines: where we have our backs against the wall. So, with your prayers, we will be able to put off the dialysis. until the fistula is ready to be used.  Already Glenn has stayed off dialysis months longer than was expected And that is a result of all your prayers for him. So there is your new prayer request challenge.
Glenn's sister is doing much better and is off the ventilator, although still in ICU. His mother hasn't had any more problems arise from her fall. His sister says Martha has a pretty bad black eye and bruising on one side of her face. But she seems to be back to her normal self.
Thank you all so much for your concern and for faithfully keeping up with Glenn through this blog and your prayers. That has made this experience so much easier than it could have been. I'll be back again soon to keep you all up to date.

Tuesday, May 15, 2012

Whew, what a ride!

It's been an interesting past 24 hours. Started out that I called the P.A. (physician's assistant) in G'ville because Glenn has been having a low temp. She talked to the Dr. and he said to go to our local ER and be sure to tell them that he is at great risk for catching infections because his white blood cell count was so low when we were there last week. So after I got some stuff packed, and Glenn fiddle-farted around we went to one of our local ERs. But when we got there, it was PACKED. So we decided to just go to G'ville.  It was quite busy, as well. (Here's your tip for the day: try to never go to the ER on Mondays. Apparently Monday is notorious for being very busy in the ER). Oh, back up: before we left the house, our brother-in-law called to tell us that Glenn's sister, who has been on dialysis for several years, was on a ventilator and thought to be sceptic, (bad, bad infection in the body.) Not looking good there. While we were waiting for four hours to be seen in the ER in G'ville we got two calls from the nursing home where Glenn's mom lives (who is 94, with Alzheimer's). She had fallen and they needed to send her to the  ER for stitches on her head. We couldn't be there for her either. Neither of us can see either one of them because of Glenn's risk of easily catching an infection. Luckily his other sister was able to go to see their sister and then go with Martha to the ER. (Everyone at a different hospital). Martha is having some issues from the fall and we are keeping a close vigil  by the phone. 
We got into a room in the ER at midnight, and after having a bunch of lab tests, Glenn was sent on his way at 6AM, and not admitted as we expected to happen, because his white blood cell count was better. So we hung around until the clinic opened up to see his Dr. and we did get to see him, instead of having to go back  tomorrow for his scheduled appointment.  9We got a moderately stern rebuke from the PA for not following directions and going to a local ER, because if Glenn was to become sceptic, which is the risk with his counts being so low last week, it could happen in a very short time and if we were driving in a car to G'ville there's nothing that we could do. If we were in a local ER, even if we had to wait a long time, at least if he became sceptic it would happen in an ER where he could get immediate treatment.) The Dr. clarified what he thinks will be the plan, depending on the results of a bone marrow biopsy Glenn will have next week. He wants to do some heavy doses of chemo for a week and then the same the following month. And then the stem cell transplant possibly in the early fall. All this depends on the results of the bone marrow biopsy. If this is making your head spin, I'm there with ya! Glenn is just going along for the ride.
Back to his sister, I'm going to find out in a few minutes what's happening with her. His other sister, poor thing,  is pulled in several directions right now. She was up all night with Martha in the ER, and then had to go to work. Luckily she has tomorrow off. But please include her in your prayers. There are no other siblings to keep up with, praise the Lord! Just the three of them, and Martha. That's plenty to handle.
So hopefully I've filled you in on everything. I will continue to keep you up on the latest happenings in the Boyles family saga as they occur, or as soon as I can. Whether or not Glenn has the surgery for the fistula this Thursday remains to be seen, depending on his fever be continued.........

Wednesday, May 9, 2012

Bombs dropping

I debated whether to make an entry tonight, or to wait until tomorrow or the next day when I'm a little more settled about our visit to the oncologist today. But here I am. I'm probably making all this out to be much more than it is.
Long story short: Glenn's kidney function/lab values were not what the Dr. had hoped they would be with the steroids and chemo regiment he's had Glenn on. So the Dr. wanted to admit him next week to do another stem cell transplant and use different chemo than was used with the first transplant. He wants to get the light chain production, the disease that is causing all the problems, under control. But since Glenn is scheduled for his fistula to be placed next Thursday, the Dr. will wait until that incision is healed. The stem cell transplant entails dropping a bomb of chemo in his body to kill the darn things, (the excess light chains), which totally wipes out his immune system and makes him totally open to infection and inability to heal. Then two days later give him back his stem cells that have been frozen from the harvest with the first transplant. Those will eventually grow and cause his immune system to increase. The Dr. also mentioned giving Glenn a large dose of chemo for six days and again in another month. I don't know which is going to happen. I just know he has taken a long look at Glenn's body's response to what he's been doing so far  and it is't getting him into remission/ getting the light chains to a normal level. We know the kidneys are pretty much toast at this point, but the disease, if not gotten under control, can affect other organs, ie heart, lungs, liver, colon, brain, if it hasn't already.
At this point I'm pretty much speechless. Glenn, on the other hand, is pretty nonchalant about it. I think he's more focused on the surgery for the fistula next week, understandably. He's happy that with today's work up for the fistula they found a good vein in his left arm this time. He had hoped for that rather than having it in his right arm. That's not the final decision. That will happen by the surgeon during the surgery next Thursday. But at least there's hope for the left arm to be used for the fistula.
So that's where we are as of today, folks. Prayers, good thoughts, etc, please.

Friday, May 4, 2012

Just another week in paradise

Last week, was the first time since Glenn had his stem cell transplant, that the chemo has had any adverse  affect on him. By the third day after treatment he was totally wiped out and not too interested in most foods. He started feeling better by the 6th day, (Sunday) but is still recovering. We don't really know why it was different this time.
This week at his Dr. visit in G'ville, we got to discuss why continuing the chemo is necessary. He believes it is helping to curb the LCDD and the unknown disease that he thinks exists that is affecting the kidneys. Since he mentioned his suspicions about an auto immune disease, I asked if there was a blood test for that. But he said not for a kidney disease. There is a blood test for other auto immune diseases, but not for what he suspects is happening to the kidneys. Probably could find out with another kidney biopsy but neither the oncologist nor the nephrologist want to take the increased chance of bleeding with a third kidney biopsy. We go to the nephrologist next Tuesday and will be able to relay that info to him. Maybe this time he will remember to call the oncologist and discuss all this. It would make me feel better if they would have regular communication about Glenn's treatment.
Glenn never did get a call back about the fistula. He (the Dr.) was on vacation. So we should get a date for pre-surgery, and then the placement, soon.
 As you can imagine, Glenn is NOT looking forward to another foreign object dwelling in his body. (He has a "port" in his right front, or anterior for you medical people, shoulder which is used for accessing blood without having to search for a vein.) But he knows that it is a pretty sure bet that he will be on dialysis this year so the fistula has to have time to "mature" for a few months before it can be used. (Please forgive me for repeating things. I don't remember what I've told you and what I haven't.)
Wednesday we went to G'ville for his usual appointment. His white blood cell count went down very low, an effect of the chemo, so he is restricted from a lot of things because he is extremely susceptible to any kind of infection. Other than that, his labs weren't remarkable, not normal, but not varied from the last week. His kidney function went to 13% from 11% the week before. It has been hovering around there for a while. (This  value is the percentage of kidney function compared to 100% which is a normal value.) At this level the Dr.s are judging by any symptoms he may have in deciding when to start dialysis. So far he hasn't had any that are noteworthy.
I don't know how to wind this up, so  that's it for now.

Wednesday, April 25, 2012

Back to the subject of dialysis

It's Wednesday already and I haven't filled you in on Monday's visit to G'ville. I'll fix that right now.
Glenn had his chemo treatment without any problems. We were disappointed that his kidney function went down again to11%. The Dr. seemed pretty disappointed about that and asked if Glenn had made an appointment for the fistula, which he hadn't yet. So he (Glenn) called to set up an appointment with the vascular surgeon. We don't have a date for it yet. We go back this coming Wednesday to his regular check up and hopefully they will have given him an appointment with the surgeon for that day as well.
It's just hard to believe that Glenn's kidneys are functioning at such a low level because to look at him you wouldn't know anything was wrong with him. He is tired sometimes from the chemo, and retains fluid from the steroids, but other than that he doesn't have any obvious outward symptoms of kidney disease. He doesn't feel sick. I don't think his color shows any indication of how bad the function is, although I wouldn't describe him as having a pink complexion, but he hasn't for a long time. It hasn't gotten progressively worse with the reduction in his kidney function.
I've told you before that the Dr. believes there is something else going on with the kidneys besides the blood disease. Monday he mentioned autoimmune disease. I looked up treatment for that and it is just what the Dr. is doing for him: cytoxin (chemotherapy) and steroids. Next week I will ask him about doing a blood test for autoimmune disease because that is easily diagnosed from certain blood tests. I believe he was tested for that before his transplant. I looked through his lab tests, (I keep a copy of each one). He did had one and it was negative, so I have questions for the Dr. about that. Because of his theory about an autoimmune disease, he wants to start Glenn on chemo more often and by mouth (a pill), instead of IV and wants him to take it every other day, with steroid on the other days. If he starts that, it will be in three weeks when he's due for his next treatment.
 I am happy to report that his edema has gone down a lot and continues to go down. He says he feels much better and not so bloated now. He looks better and his clothes fit better, too. He also didn't need any blood products yet because his counts were still in the safe range. I won't say normal, just not to the point of needing anything. He has enjoyed doing work for Flighttime Radio, the program that he helped start several years ago. He's helping them with marketing and getting guests for the weekly Saturday afternoon show. He had  his "buddy", the sheriff  on a couple weeks ago to talk about the city's air fleet.
I didn't intend to ramble on so long. I must be getting that from Glenn! You all know how he can talk as long as you will listen. I sure know it! So I'll stop before I get that reputation.

Wednesday, April 18, 2012

A quiet week

This week has been pretty unremarkable, so that's why it's been quiet here on the blog. Glenn got his semi-monthly shot for his red blood cell count yesterday, and his labs looked pretty good. They didn't test for his kidney function this time, but they will when we go back Monday for his chemo treatment. We suspect it's not getting any better because he has been very swollen for a couple weeks now. And we talked about shaving his head because he is shedding so much, we suspect either from poor kidney function or chemo treatments. He is dragging his feet about calling to schedule for the fistula to be placed. Can't blame him, can you? But it really needs to happen soon so it can "mature" for about four months and be available for use.
We  got our van back Saturday, yea!!!! Glenn keeps busy with insurance companies and the lawyer, when he's not getting treatment at the chiropractor or other Dr.s. I wish we could hire his own personal massage therapist. Seems like more and more parts of his body are needing to be massaged. He gets frequent foot massages from me, especially when they are as swollen as they are now. Also gets his shoulders massaged pretty often, usually when we are riding in the car. One thing we are very pleased about is that his ears have pretty much opened up since he stopped taking the high doses of steroids. It took several weeks for them to clear up, but now he can hear much better. When they were plugged up, he would talk quite loudly on the phone and I would remind him  that he was yelling. You may notice when you talk to him on the phone now that he is talking  normally.
Our daughter was home from New York last week for several days and we enjoyed her staying with us. She will be back permanently in a week and half and has rented an apartment in town. We will all be soooo glad to have her back here.
TTFN  (Ta ta for now).

Thursday, April 12, 2012

Happy Anniversary to Us

This week we had two trips to the Dr. in G'ville. Monday was again a short day there. The Dr. wanted Glenn to return today to check on his white blood cell count because it continues to go down unexplainably. Today it went up ever so slightly. His kidney function went down a little. Glenn asked him what he thought about whether he should go ahead with having the fistula placed, and he said probably should because the function isn't staying above the borderline level. He, (the Dr.) seemed disappointed about it because he was hoping he had the answer to keeping it up. But it didn't work. Which was disappointing to Glenn as well. He said it's like admitting defeat. But he's not too down about it. He's resigned to it. So, in a nut shell, the original disease, Light Chain Deposition Disease, isn't arrested, and the kidneys continue to be damaged more and more by it. As I mentioned on facebook, in commenting on today being our 32nd anniversary, we were actually celebrating life just by the fact we are still going there, ie he is still alive. That is truly a celebration every day.

Tuesday, April 3, 2012

A short and sweet Dr. appt.

As I said in the last entry, we never know what to expect when we go to G'ville for Glenn's appt.s. Today was the shortest appt. we've had in a long time: in and out by noon! It seemed like a quiet day when we checked in because there wasn't anybody in the waiting room when we got there, although there were a couple people who came in after us. But we didn't have to wait too long for anything today. His kidney function continues to stay stable, (actually went from 15% last week to 16% today). His other counts were down from last week but not enough to be a concern yet. So he just got the shot he gets every  two weeks for his red blood cell count and we were out of there.
I should back up to yesterday's appt. with the nephrologist: bottom line is that he wants Glenn to go forward with getting the fistula placed. But we all agreed that Glenn would ask the VA Dr. to request a referral to the nephrologist there at Shands in G'ville. We tried to get him in there before but they don't accept medicaid, so we're thinking we can get it covered by the VA. And our neph. wants to get a new set of eyes from the nephrology view point on Glenn's case anyway. So that's our new strategy. Our nephrologist also wants to rethink having chemo treatments, what are we trying to accomplish with it. And if it's to save the kidney's, he thinks unless there is a significant improvement in the kidney function, his kidney's are probably too far damaged to try and save and decide if the chemo is necessary. He will talk to the oncologist about it all this week, hopefully and come to some determination about what we should do from here. I'm glad he is thinking this way, because I said I think it's time we step back and look at the situation and what we're doing and if we need to take a different strategy. Glad the Dr. agrees with me!
I want to add that Glenn has been much nicer this week, (since he completed the high dose steroids) :-) His swelling is ssslllloooowwwwlllyyy going down. He'll be glad to get back into clothes that are more becoming to him.
So, that's all for now. ( I think I might get to go play Mah Jongg tomorrow!!! But I don't want to say that too loud and jinx it.)

Tuesday, March 27, 2012

And the results are........

Good news- Glenn's  counts were good enough to avoid a bone marrow biopsy and was able to get his chemo. That sounds kind of convoluted, doesn't it. But Glenn was relieved he didn't have to get jabbed with that big needle, even if he doesn't remember the worst of it, and he doesn't know just how big the needle is. He does remember the wonderful high he has afterward from the Ativan. We never know what to expect when we go to G'ville to appointments. It could end up being a long, unproductive day,  a "short" day, a long day with stuff getting done, and we always are prepared in our minds for him to be admitted, even if he feels fine, but his labs are bad. Today was a long day, (left at 8am and back home at 7:30pm), but we got stuff  accomplished.Tomorrow he gets to go out on his own to the chiropractor and to the VA to pick up a Rx and get a hair cut. I get to be home alone! Ahhh, what shall I do? Cleaning and maybe hanging more things on the walls. Trust me, I won't do any more cleaning than I want to do! I never, hardly ever, get to be here all by myself, now that Glenn is retired/disabled. It's nice to be alone sometimes. Even though I can't go anywhere, I will enjoy the  alone time. And Glenn will enjoy being out on his own. We might like each other better after our times alone! (Just kidding, we like being together, too.) We go back to G'ville in a week.

Monday, March 26, 2012

"Now listen, you who say 'Today or tomorrow we will go to this or that city'....." (James 4:13)

Well, that week didn't go as I expected. First of all, Glenn hasn't been too hard to get along with. The steroids are really puffing him up. And I've had to remind him to be calm in stressful circumstances since he is more easily upset when on steroids. Like Tuesday afternoon when he had a minor car accident. He got hit from behind by a quickly moving car that didn't quite complete her lane change,,,,on Blanding,,,,,in busy afternoon traffic. And when the car wasn't in the parking lot where the officer told him to move it until he could get back from the ER, (he went to the ER to get xrays because his neck and back were hurting, but so far he's ok.) And when the officer on the phone told him there wasn't anything that could be done about the car being towed without his permission.That got straightened out. So now we get to "test drive" different rental cars. We had a nice new Caravan with all the bells and whistles, and then got a pick-up truck, which Glenn has wanted to get for a while now, so he can try it and see if he really wants one first, without actually buying one. The insurance company says our car can be repaired.Glenn is leery about that because the car isn't worth more than $3600 at the most, and he's pretty sure there was damage that the insurance company missed . We'll see.
He had a more pleasant experience with the VA Dr. at his second appointment. The Dr. says Glenn should keep on the treatment  he's on with the Dr.s he has now. He knows it's better care than he could get with the VA. An honest evaluation, how refreshing!
So anyway, I didn't get to go to the ice cream social that our community had Tuesday evening, or to play Mah Jongg Wednesday that I was so  looking forward to :-( . Oh well, for better or worse, in sickness and in health, right? That's what we both signed up for. But on the bright side, we get to pretend that we have new cars all the time. And today Glenn got to have a long-awaited-for lunch that has had to be postponed several times, with one of his "buddies", the sheriff  of Duval county. He even came in and had coffee after they got back from lunch. I was not warned ahead of time, but it's all good.
We go to G'ville tomorrow to see if Glenn gets chemo or a bone marrow biopsy: chemo if his blood counts are ok and biopsy if not. He can't tell how his counts are  because he feels the same no matter what they are. He was told at the VA that he didn't look nearly as bad as his labs say he is. But we both look forward to when he gets to stay off of the steroids. He's not quite as hard to get along with and his skinny clothes fit ;-). Next update coming soon.

Monday, March 19, 2012


Our trip to G'ville today, you ask about? Well, Glenn didn't get chemo today because some of his labs, (namely his platelets, for you medical people), are going down instead of up and the Dr. doesn't want to give the chemo when it's down that far. Soooo, he has started him on BIG doses of steroids, (prednisone) because he thinks that is what the platelets responded to in the past. We'll see next week when we go back. His other labs were not too bad, not much change. His kidney function stayed the same as last week. In the mean time, I am going to stay clear of home as much as I can. The steroids make Glenn "aggressive" :-(  Of course, I'll be here to take care of him, but I plan to take advantage of every opportunity to get out. Maybe some Mah Jongg this Wednesday?! Hopefully. Maybe the ice cream social and bingo in the neighborhood activity center tomorrow night. And whatever other activities that come up. This week won't be as much fun for him as last week was. He has to continue to stay away from crowds and wear a mask when he is out. The Dr. also put him on an antibiotic because there is some wheezing in part of his lungs and he wants to be sure that there isn't any infection looming anywhere when Glenn gets his next chemo. He also got a shot to try to bring up his red blood cell count. It isn't worse but it's not better, either.
If you feel like you've just been loaded down with a big load of medical info, trust me, I feel your burden! But, don't worry, I'll carry it for you! In the mean time, please be sending up prayers for peace in this household this week. Thanks. You all are wonderful and I know I can rest assured that there will be much intercession going on for us.

Saturday, March 17, 2012

Fun in the sky and airwaves

This week, Glenn has gotten to go flying twice, and co-host a radio show about flying last Saturday and today, (Saturday). It didn't help his health much but really raised his spirits. Last Sunday after his day out at an air show on Saturday, he came down with a fever, low grade, and then a sore throat and then chest congestion. The fever went away after a couple days, just in time for him to go flying again on Thursday. You could say he was on cloud 9 ;-)  The plane was an historic 1929 Ford Tri-Motor, the first model built for commercial passenger flying.  (I'm reading the details from an article he wrote about his experience; I'm really not an airplane buff like he is). He got home this afternoon and promptly fell asleep in his recliner. He has worn himself out this week, but he's happy to have had these experiences. Hopefully when we go to G'ville Monday he will be well enough to be able to have his chemo treatment and whatever else he needs. He hasn't had a fever this week since after last weekend, but his chest congestion has gotten worse. I am glad this week is over because I don't like it when his Dr.s are away. I'll be reporting back to you after Monday's Dr. visit.

Friday, March 9, 2012

Up and down, down and up

Well, the see-saw labs continue. Glenn's white count was better so he doesn't have to be AS careful as he was the first of the week, but still wear a mask in crowds. However, his kidney function seems to be trending back down; it was down from 18% function Tuesday to 15% yesterday, (Thursday). So far there's no explanation for that. Still, Glenn is very happy that he can go out, even with a mask. It means he can go flying this weekend as well as broadcast a radio show from the same air show. He's happy with that. We don't have any Dr. appt.s next week. Yea!!!! We get a week off!!!

Tuesday, March 6, 2012

Labs, labs, labs, how they control our lives

Well, today  didn't go the way Glenn had hoped it would at his G'ville visit. His blood counts were lower again and he has to be REALLY careful about keeping away from crowds and possible infections. He was/is pretty  bummed. He had to cancel some plans for this week and is hoping that when he goes back Thursday that the labs will be better. He got a shot to get his white cell count up and a shot to get his red blood cell count up. He didn't have to have blood or platelets yet. On a happier note, he talked to his nephrologist today and he can hold off scheduling the access placement because his kidney function has gotten better the last two times it was checked. The Dr. said we will have to see what the trend is, up or down or steady. That was encouraging.
Yesterday Glenn installed a water purifier in the kitchen sink and he used muscles he hasn't used for a loooonnnngggg time. Last night he got some terrible cramps in his hands. It was very concerning to me because I didn't know if it was that his potassium was really low, or if it was a side effect from the antibiotic he started taking. The cramps finally subsided after he sat still and kept his hands still. His potassium level today was fine, and the Dr. wants him to continue taking the antibiotic and if the cramps happen again we are to call.
I'm feeling a little insecure because both his nephrologist and oncologist will be out for a week. Of course, they always have someone to cover for them, but nobody else has kept up with his treatment and condition. So please pray that nothing drastic happens at least while the Dr.s are gone. Not that I want anything drastic to happen anytime, but you know what I mean. When we  go back to G'ville the day after tomorrow, Thursday,  Glenn is really hoping his blood counts will be better and he can get out and about. He has plans to go to an air show in Lake City and do a radio broadcast there this Saturday. He is really looking forward to it and is hoping that he won't have to cancel because of his blood counts. I'll definitely keep you posted.

Friday, March 2, 2012

Unpredictable lab counts

Hello all you faithful followers. I have three Dr. visits to tell you about. We went to Glenn's Wed. appt. with the oncologist in G'ville and his blood counts were down so he wanted him to come back today and possibly get some platelets and/or blood. His kidney function was about the same: 18% down from 19%, which is not a big deal, just depends on whether it's a trend in one direction or the other. We also did Glenn's "prep" to have the access placed at sometime in the near future. That just involved getting an EKG and talking to the anesthetist. The surgeon wanted Glenn to have the surgery done the following day, but we told him that we want to see the nephrologist first, because of his kidney function increasing and to make sure that he should go ahead with it. So that is on hold for now until this next week when we see the nephrologist.
Our visit today ended up with Glenn not having to receive platelets or blood, yet. His platelet count went up a little so the Dr. held off on that. His blood count didn't go as low as the Dr. thought it would so he didn't have to get blood, yet. He wanted Glenn  to come back Monday but he has appt.s with the VA Dr.s so we go back Tuesday to see if he needs the platelets and/or blood. He also will get a shot to get his white blood cells to hurry up and mature because those keep going down. The result of that for now is that he has to stay away from crowds, or wear a mask when he's out, and he can't eat any fresh fruits and vegetables, raw meat, or anything that comes out of a dispenser. These are all to keep his risk of exposure to bacteria down. So he has a list of things he wants to get done this weekend around here, since he can't go out. He still is feeling pretty well. His swelling in his legs has gone down a little bit because I made him take the second diuretic he has for when  he is too swollen. He still needs to take another one to get it down better. I just wonder what would happen if we left his body alone and didn't keep messing with all the levels by taking so many meds. But we won't do that.  He is feeling pretty well these days so we won't mess that up.  I'll be back here next week to fill you in on all his appointments. And I'll let you all know if and when he gets a radio show going. That won't be for a while yet.

Saturday, February 25, 2012

Whew! A busy week, but a good one.

We just got internet back today after our move this week, so I can give you an update from Wed.'s Dr. visit. And it is good news: Glenn's kidney function has gotten even better. It had gotten down to 9% function and went to 11%, then 15%, and now 19%! We don't know why, but the Dr. is even more convinced it's because there is something else going on to cause the function to drop besides the original diagnosis of Light Chain Deposition Disease and that it is responding to the chemo. Probably the only way to find out is to do another kidney biopsy, but the nephrologist doesn't want to do that if not absolutely necessary because Glenn has already had two kidney biopsies and the neph. Dr. said it's with the third one that he has seen problems with bleeding in his experience. But whatever it is, the Oncologist in G'ville is very pleased at the improvement.
Glenn also had a consultation with the vascular surgeon and he will be having surgery to have  an access placed. It takes about 4 months for it to be ready to be used (for dialysis) and we don't want to have emergency dialysis if that scenario occurs. We, (the Drs. and we) want to be ready for it when it becomes necessary. That was about to happen when his function was at 9%. That's why the Dr told us at that time to come back prepared to be admitted. But it did get a little better at the next visit so we were able to hold off. God has been so good to Glenn with not having to go on dialysis. That is his prayer and what he has been requesting people to pray for. As I have mentioned before, he has been feeling better, so he is working on getting a program on the radio again and feeling like he can be useful in some way.
 I am soooo glad our move is over. This was probably the hardest move I personally have done, physically. You would think it would be the easiest since we were only moving about two blocks away. But I think that's one reason it was the hardest, since we did it over three days instead of one grand move. Glenn can't lift much at all so I did 90% of the moving, and Thursday the muscles came and did the heavy furniture. My lesson learned is to just do it all in one day when I have the strong people to move things. Between moving Tues., Wed., and Thurs., and going to G'ville Wed. and Fri. and staying up till 2:30 putting the kitchen together, I was so exhausted that I didn't get up today until 2:30 this afternoon. And did it ever help! We still have a mess to get organized. We don't have as much space as we moved from so it's creating a problem trying to arrange the furniture in a functional way. Even Glenn, the logistics major, hasn't figured it out yet. Still, I am glad the moves are over and we can settle in and feel at home now.
We go back to G'ville this coming Wed. to have his labs done because some of it isn't up to what it should be and is, in fact, continuing to fall, so the Dr. wants to check it and see what it does this week. So, I'll be back after that visit to fill you all in. Thank you for hanging in there with us.

Sunday, February 19, 2012

oops, sorry I've been away so long.

Wow! I did not realize it's been so long since I made an entry here. Again, no news is good news. Glenn has continued to feel better and has gotten the itch to work and to have a radio program again. Problem is that he can't really make commitments because we don't know how he will be doing at any given time. He's working on a couple things, though, that don't require a commitment of time.
We get the keys to our next place this Tuesday afternoon so we can get all the stuff moved that I can move, which should be a lot. The big and heavy stuff we will get moved Thursday night when we can get the muscles over here. In the middle of that, on Wednesday Glenn has an appointment for chemo treatment in G'ville. So we've had a week "off" and now the busy week begins, which I am glad to be entering. I feel so useless when we don't have anything planned.
That's about all there is to tell you today. I'm sure there will be more to report after our G'ville visit, but I don't know when I'll be able to get to share anything with you since we will be in the middle of moving as well. So be patient and I'll report to you as soon as I can.

Wednesday, February 8, 2012


Our visit to Shands-G'ville today was encouraging. Glenn's labs showed that his kidney function improved again! Now he is on the cusp between stage 4 and stage 5 (renal failure). The oncologist thinks there is something else going on with the kidneys besides the Light Chain Deposition Disease that was damaging his kidneys and that the chemo is what is causing the kidneys to improve the way they are. Glenn is being referred to a nephrologist there at Shands-G'ville for that reason and to get him ready for the dialysis accesses to be done there. That way the accesses can hopefully have time to heal before they have to be used. When Glenn does have to go on dialysis, he can have it done locally, we're pretty sure. We really like, and are very confident in his nephrologist here, but he agrees it wouldn't hurt to get another set of eyes on all this.
Glenn will continue to have chemo every three to four weeks indefinitely and has to stay on steroids as well.  He continues to feel pretty well and his energy level has improved so that he doesn't have to rest most of the day like he used to. We are so retired people: we like to go to the grocery store and we have opinions about which ones we like to go to. We go together everywhere, just about, esp since we are a one-car family now. That has really worked out well. He lets me have a "me-day" whenever I need it to just go off by myself as long as I want for the day.  I find it sooo refreshing to do that. I usually wander around malls and other stores aimlessly, and treat myself to something good to eat. :-)  So it needs to be when we have a few extra dollars. Actually, thinking about it,  I'm about ready for one again.
Got your message, Dr D.S. Thank you for letting me know that you are keeping up with this regularly.
I want all of you to know that your prayers and encouragement have been the reason Glenn is doing so well. So keep up the good work!

Monday, February 6, 2012

Rolling the ball along

Thought I'd fill you in while today's activities are still fresh in my head. Glenn had his first visit at the VA. I have to say they lived up to their reputation with me: not good. Glenn says they were actually more efficient than he expected. I say they move cattle well. The Dr. was not at all impressive, which was a disappointment because I had heard that the Dr.s were better than they used to be. But, sadly, not here. Anyway, we will be able to get his Rx's for cheap. The rest of the care is yet to be determined.
At any rate, we also saw the nephrologist today. We gave him the G'ville oncologist's cell phone number, which I had saved when he had called once a while back and the neph. called him right then while he was with us in our appt. They are putting together a plan to get Glenn's fistula and peritoneal catheters placed soon. Finally we've got the ball rolling with that. I hope we will have specifics Wednesday when we go to G'ville for his next appt. there.
Aside from that, we got a definite date when we will be moving to our "permanent" house: Feb. 23, a Thursday. We have to be out of here by that date because they've got to get it ready for new residents to move in by the 1st. At this point we can't get into the next place any earlier than the 23rd but I'm hoping that will change and we can at least move boxes ahead of the move date. But it's all good. We'll be settled soon.
Thanks everyone for your faithfulness in following us. You're the wind beneath our wings!

Sunday, February 5, 2012

Busy agenda this week.

Tomorrow Glenn has a long day: VA appts at 7:30am and 1pm, then nephrologist appt at 3:45. The good thing about this schedule is that we are able to consolidate two days of appts into one. So now we will only be out at appt.s two days instead of three this week. He has an oncologist appt Wed in G'ville. So two long days but that's ok. I'm glad he get to see Dr.s now. I talked to the nephrologist this week to see if he would talk to the G'ville oncologist to maybe set up a plan to get Glenn's dialysis accesses placed, whether it is a peritoneal catheter placed or a fistula, or both. He wants to do pd (peritoneal dialysis) so he will also have to have the fistula placed as a back up source dialysis to be able to do hemodialysis if something goes wrong with the pd cath.  He's feeling pretty good, except that the steroids make him feel weird, (no smart remarks from any of  you please. I know it's a huge temptation [pqb]).
 We are off to our Super Bowl party now. Good food and fellowship. Who cares who wins?!

Tuesday, January 31, 2012

Dodged that bullet!

It's amazing! Glenn didn't have to go in the hospital yesterday because his labs didn't get worse, and actually got slightly better. I wonder if all your prayers had anything to do with that, wink wink, ;-)  So we are feeling like we have a "free" week this week, since we planned to be in the hospital for a few days and now we aren't! Next week Glenn has 3 different appointments: with the VA to get started with them so he can get his Rx's paid for; at the nephrologist to figure out where to go from here with the dialysis accesses; with the oncologist in G'ville for whatever the next step is with them. He has to continue on the steroids for at least a couple more weeks. So he will have to deal with swelling some more, but the dose is lower than it was. Right now he is resting/sleeping in his chair. I'm sure the last couple weeks have him worn out, I know they have me worn out. This "free" week is such a welcome relief before we have another busy two weeks with appointments and moving again. (I don't remember if I told you that we moved into a 3 bedroom unit until a 2 bedroom is available in the middle of Feb.) But we are really pleased with our new neighborhood community. It's a small "55 and over" community, an old military base that they refurbished the military living quarters and made into this community. In a beautiful, peaceful setting. We never want to own a home again. It is so liberating to pay rent and let someone else take care of the yard, the repairs and upkeep, etc. We were told that we can treat it like our own home for whatever we want to do in it, like redoing, etc. It feels very homey.  And they plan activities for us, if we want to participate. Yes, bingo is one of them. We are officially old now. We will be able to meet everyone here when we get settled and have more times without appointments.
I need to go get ready now for us to go vote and go back to our favorite grocery store where we used to live.

Sunday, January 29, 2012

Getting ready

It's Sunday night and we are about ready for our trip to G'ville tomorrow. Not that the trip is long, just that we are prepared for Glenn to be admitted to the hospital. We aren't sure what to expect as far as what will be done to him, but guessing it will be some kind of procedure(s) to get him ready to start dialysis. I think we are past the shock stage and now kind of resigned. Well, I don't think Glenn is yet, he is still thinking he might be able to stop the kidney function going down. But this week will help us see the reality of it all. We aren't expecting to have to stay in the hospital all week, but we don't know how long we will be there. Thanks for the prayers and thoughts sent out for us. I'll let you know more when we know more. To be continued.............

Wednesday, January 25, 2012

One week later how things change.

One week later we're in G'ville again for the first treatment in a long time for Glenn.
The Dr. came in a little while ago and told us that Glenn's chemistry was bad, the ones that tell the kidney function, and he needs to get started on dialysis. Booo! So we will start that process as soon as we can. The Dr. said to come back Monday prepared to be admitted.  He has been feeling pretty good, other than the continued swelling. He 's been very active and we actually moved this past weekend, although he felt "completely useless" because he couldn't really do anything to help other than to direct. We had lots of WONDERFUL help from strong men, young and old! We are temporarily settled because we are there temporarily until a 2 bedroom comes available which will be sometime in February. Then we can  get completely settled.
That's all for now. I am trying to process this new development of Glenn starting dialysis and need time to think it out, and talk with Glenn about it to help him with it ,too.

Wednesday, January 18, 2012

Good News!

Glenn had an appointment in G'ville today. To sum it all up, there is a shot that he has to get every two weeks that more than meets the "share of cost" for medicaide...  Sooooo he can resume all his medical care!!!! It was so cute how the Dr. had a little smirk on his face when he told us what the shot would cost, because he knows what we've been going through. Yahooooo!!! God had it all worked out. Well, of course, we knew that already, but it's nice to see the answer finally. We have to go back to G'ville tomorrow because he has a follow-up appointment with the pulmonologist and he also has to get a couple units of blood because his blood count is down. His kidney function, according to his labs, is "in the toilet",( pardon the pun!). I'm sure not having treatment for a couple months has something to do with that, even though his kidney function isn't expected to improve but keep getting worse. But at least now he can move forward with getting an access implanted to get ready for dialysis, since finances are not standing in the way. We will have a busy next four days because I have to work on packing the house for our move, spend the whole day in G'ville tomorrow, finish packing the kitchen Friday and take a load over to the new place. Then Saturday the rest of the stuff will be moved. We won't totally unpack because we are temporarily going to live a 3 bedroom unit until probably the middle of Feb. when the 2 bedroom unit will become available.
Well, I must go now and do some packing.....

Thursday, January 12, 2012

Just checking in with you all

My sister reminded me, tonight, that it's  been over a week since I've had an entry here. So, here I am. Really, there isn't any big news to report. Glenn did get an appointment with the VA for 3 weeks from now. He is also getting some positive feedback about some other VA benefits he's been trying to get. We haven't heard anything from the Dr. in G'ville yet. Glenn has an appointment there next week. We have to decide if we are going to keep it, (since we probably will have to pay for it), or cancel. I'm leaning towards keeping it so we will have the Dr.'s undivided attention and can pin him down to something specific as far as treatment, hopefully.
A request I had for God was that a 2 bedroom unit would come available by the time we move at the end of this month. (At this point, we are scheduled to move into a 3 bedroom until a 2 bedroom came available. It  fits our budget better than a 3 bedroom.) It wasn't really practically possible, since they only require a 30 day notice from residents who are moving, and they didn't have any notices. But...... Glenn got a call that they unfortunately had a resident pass away, so a 2 bedroom has come available. Now, I didn't ask God for someone to pass away in order for us to get a 2 bedroom and not have to move twice. I just asked not to have to move twice and to make a 2 bedroom available by the end of the month. God chose how to make that happen. Coincidence? Clearly not.
As far as Glenn's health this week, he feels ok. He has some things that come up that bother him, but not anything for us to be concerned about at this time. He's gone out early two mornings this week to do somethings he wanted to get accomplished. He still takes naps several times a day. He is swelling again some, but not as bad as it got before. I am allowed to give him an extra medication when he needs it for the swelling, which seems to work, so far.
So, you see, there isn't anything major to report.  As I said before, no news is good news. Thanks for checking on him and keeping up with his progress.

Wednesday, January 4, 2012

Progress? Maybe....

Glenn felt much better yesterday so we went ahead with our plan that we had the day before. We timed how long it takes to G'ville from where we will be moving to, and it takes at least 30 minutes less than where we currently live. I'm really not sure if we accomplished anything at the VA  clinic.. It's as "easy" to navigate as medicaide, maybe worse. They had us literally going in circles and we finally gave up. Hopefully Glenn will get an appointment at the VA clinic here in Jax soon and he can start getting his meds from there. The way things are set up with medicaide for him right now, we have to pay total price for his meds. That's just not possible.
Glenn called the oncology Dr. there in G'ville and FINALLY got him on the phone. He is going to work with us to get the treatment Glenn needs to have and get it covered by medicaide. We went over to that hospital and talked to the financial person there and she was extremely helpful. So we are hoping his treatment will get going again soon. Yeaaaa!!!!!
Last night after we got home I still had enough energy to make some pizzelles. I wanted to make them for the sweet ladies in my Mah Jongg group today. They have been so supportive with all the treatment, etc. I can't thank them enough for all they've done for us. They are the biggest reason I'll miss living here. There are many nice, fancy, flashy amenities here but they mean nothing compared to the wonderful, thoughtful people here. God has been so gracious to let us live here for the past two years at a point in our lives when we have needed to lean on people, and these people, along with our family at church, have been the exact prescription for our needs.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. 2Cor. 1: 3-4

Monday, January 2, 2012

If At First You Don't Succeed.........

This morning we got up "early" and set out to turn in some paperwork at our next place of residence then, to time how long it takes to get to G'ville from there and get some things done at the VA in G'ville. When we got to the first stop, no one was there at the office, so we called the VA to find out if they also were off today, and they are. So...... we turned around and came back home. We'll try again tomorrow to get all that done.
So this afternoon I got some more packing done, while Glenn slept most of the day. He had a not so good night and hasn't felt well today. We aren't sure what's going on. If it continues tomorrow we will call the nephrologist to find out if this might be kidney failure related. I'll let you know how tomorrow turns out.