Merry Christmas Eve

Hello to all of you wonderful friends! We want to wish you a wonderful and blessed Christmas. We appreciate and love you all; you are so faithful in following our blog. That is more encouraging than you can imagine.

We will have our kids over Christmas morning for a big breakfast and presents. So looking forward to that. Glenn has been  feeling well these last weeks without having treatment. We saw his nephrologist this week and he is going to check out the results of Glenn's last bone marrow biopsy and talk to the oncologist to see if it is necessary to have more treatment. As far as benefits to the kidneys, that is pretty much not necessary since they are all but gone as far as functioning. They are probably damaged too extensively to try to save them with treatment. So the question is whether he needs treatment to control the underlying disease and if it has affected any other organs. So that's where we are with that. Since we found a place to live here in Jax, we know we won't be living in G'ville, but we will be closer to there and the Dr.s here in town so he can go to either place when necessary much easier. 

For those of you who are familiar with Glenn's office, he's gotten through at least half of it sorting and throwing away, although to look at it you wouldn't guess that. He has gotten through all the boxes and almost all of the filing cabinet drawers. Now the part that is visible is the next step, and that will be difficult because I'm not supposed to touch any of that. He knows what's in each heaped pile and if I touch any of it it will mess up his "system"! Hopefully we can get through it all in the next week or two and have that out of the way to start packing. Merry Christmas to you all and a blessed year ahead.   We'll be having 70's temps here. I am jealous for any of you who will be having a white Christmas but Glenn loves Christmas in Florida: "barbecue and volley ball on the beach" is his favorite kind of Christmas. ;-) (I say, "Bah, hum bug" to that!)

To spare you the suspense.....

Ok, I don't know for sure yet, but I'll tell you anyway, that I think we have finally found a place to live. It's in another "55 and over" community in a beautiful setting that also has some wildlife, and planes for Glenn to watch landing and taking off. It's a much smaller neighborhood and not nearly as plush, but has a very homey feeling, to us anyway. It puts us closer to G'ville and a shorter trip to the local hospital/Dr. offices. We'll know for sure at the beginning of the week.
Glenn feels pretty good these days, (thanks to no treatment for a few weeks). He should be getting it but the glitches with insurance, etc. have continued to put it all on hold. The up-side of it is that he will be able to feel good for Christmas. We don't know how his chemistry is and that makes me uneasy. He hasn't had much swelling at all and when he does he can take a medication to fix it.
Thank you for your continued support, encouragement and prayers.

Stay tuned for a  special announcement..........

No news is good news

I usually don't post anything if we don't have any news. But a girl at church today said just post what we're doing. She likes to know what our life is like anyway. So....
We've been looking for a place to live this week, as well as going through Glenn's office stuff and eliminating as much as I can get him to get rid of. He's done pretty well at throwing things away. But we haven't had any luck finding a place to live yet. We looked at a place near G'ville that we really liked and the girl we talked to was supposed to talk to management to see if they could give us a better rate. She hasn't called back so we at least missed out on the special if we would have signed within 48 hours. I guess we'll call tomorrow to see if she can give us any good news. Other than that, we haven't had any luck finding anything in\near G'ville or in the Orange Park area, which is just southwest of Jacksonville and closer to G'ville than where we are now, but still in this area. And we haven't made any progress with Glenn's treatment yet. So we continue tomorrow, (Monday) to work on those two things.
This weekend we had our Boyles Christmas  get-together and feast here at our place. It was wonderful! Everybody in the family came as well as all but one significant-other of our kids'. We all had a very great time together eating and watching Phoenix open her presents. The cousins got caught up with each other and Glenn had stories to tell about his two sisters to entertain us all. And we had waaayyy too many desserts. ;-)  If I was techno-savy I'd post pictures here, but haven't figured that out so you can see them on fb if you and I are fb friends. But I'm sure everyone would agree it was a a wonderful, memory making evening.
Glenn has been feeling fairly well, since he hasn't had any chemo treatments for a few weeks now, and he's been able to get out more this week. We were able to go to church today for the first time in a while. Sooo good to be with, and see everybody again. It was very encouraging to him to see everybody and for them to see him and how well he's doing.

Results of tests.

Ok, so I finally called the Dr. since we hadn't heard from him. He said the chemo must have helped because the value he was looking for in the bone marrow was better. So Glenn will be on chemo treatment every three weeks as what the Dr. called a maintenance therapy. His hope is that the kidneys will recover some function. Encouraging news! But that didn't help us make a decision as to where we should move to, though we pretty much have decided that since we have to get another nephrologist anyway, that we will use one in G'ville there at Shands. We will be talking to the finance dept there hopefully Monday to see what county we have to live in to be in their system. Maybe THEN we can know where we will move.
I have pretty much gone through all the rooms and gotten rid of what I need to through garage sales and Goodwill. That is a load off. I've got Glenn going through the stuff in his office by bringing out a few boxes at  a a time to the living room (where he pretty much lives, eats, and sleeps). That angle seems to be working better than trying to get him to go in his office. It looks like an overwhelming job when he tries to go in the office and do the sorting. And if you've ever been in our home, you know why it is overwhelming to him. So a little at a time is working so far. He went through his stuff one time and we got rid of more than 15 boxes, but he still has about that much more to get rid of, if not more, hopefully. So we have pretty much started the process of moving. We gave the required 60 day notice and got move out instructions. Of course, we'll be glad when this is all over and we are settled for a while again.

Just want to fill you in

Hello faithful friends, I just want to let you know we haven't talked to the Dr. yet about the results from Monday's tests. We missed his call yesterday so we're waiting for him to call back. Sorry I don't have anything to report to you. Really sorry! Wish we knew more.

Post-test report

I wish you all could experience what I'm seeing: Glenn is still feeling the effects of the Ativan. He keeps saying, "This is weird,...... really weird........strangely weird....... weird weird". I tell him HE'S weird. We went to G'ville today for some testing, including a bone marrow biopsy and he convinced them that he needed an extra dose of drug because he was so apprehensive about it. They really didn't want to give him the extra dose but he wouldn't stop about it so he got it. He also had to get some potassium because it was really low again. We won't know results from the tests until later in the week. I'll let you know what we find out.
Glenn got his first check for disability, YEA!!! God is soooo good! Little did we know when all this began that he would be legally disabled. We thought he would have the transplant, recover for a few months then get back to normal. But God has other plans, as we are finding out, little by little. I think, though, that he would agree with me that there has been MUCH more good and positive than bad and negative. Anyway, I will let you know what we find out when we find it out. Right now I have to give a foot rub.

Better

Hope everyone had a wonderful day yesterday. We got to go to my sister's for dinner, since we couldn't go to our daughter's boyfriend's because he has a fever. We were just talking about going see if there were any restaurants open when my brother-in-law called to invite us over. So we got to have dinner with family. God came to the rescue for us!
Glenn's fever is coming down to normal. It was barely up tonight. He feels like he is coming down with a cold, though. We'll see if it was because we had the windows open today, when we get up tomorrow. And counting down the days till we go to G'ville Monday for some tests so we can get a picture of what's going on with the disease as well as the kidneys. I'm hoping I will understand better where he is in this process.

Still hanging on to a fever.

Glenn is still recovering from pneumonia and on his second round of antibiotics. Yesterday his temp was normal in the morning but in the evening it was up a little. So I can't say it's completely gone, but his cough is much better. We had planned to go to our daughter's boyfriend's for Thanksgiving, with his (her boyfriend's) mom, our other two kids and their girlfriends. But her boyfriend came down with a fever so we can't go now. Boo :-(  I think our daughter will be bringing plates of food for us.
In case you're wondering, we still haven't decided where we are moving to. I thought our visit to G'ville this week would give us some direction and it kind of did, but Glenn isn't convinced to I'll let you know when we do make a decision.

A little stirring of the waters

I can finally give you a report on Glenn's appt. in G'ville Wednesday. I held off until we got all the test results.
His labs aren't any better over all. He continues to gradually decrease in his blood counts. He had a chest scan because of the nodes that were found six months ago before the stem cell transplant, and we got the results of that today: he has pneumonia, which explains the fever for the past two weeks. The Dr. there had already started him on antibiotics for the fever when we were there Wednesday, so it's a good thing. That Dr. called today to give us results of that and of some other labs. Basically, his kidneys are just not getting better but worse. His numbers are kind of a mystery so Dr. wants to do a bone marrow biopsy after Thanksgiving to see if the disease is any better. He is trying to find out why the kidneys aren't any better despite the chemo. The hope was that the chemo would put the disease in remission and we would see at least a halt in kidney damage, if not a little improvement. But that hasn't happened. So he and the nephrologist want to figure out what is causing the progressive kidney damage. They will also do other tests at the time we are there for the biopsy. The G'ville Dr. will also review the results of the kidney biopsies Glenn had a year ago and maybe consult with a nephrologist there at Shands about those. So we are stopping the chemo treatments and retesting and investigating to see what needs to be done next. Glenn will have a third week off of chemo while we do all this. Then there should be a new plan of treatment of some kind based on the new results and the reviewing of past results. The nephrologist doesn't want to do another kidney biopsy because Glenn has an increase risk of bleeding because of his blood counts being down. That's pretty much the info we have gotten. He says he feels ok, but then he will say he feels strange in a way he can't describe. And he is more tired than he wants to admit. We did a lot of walking when we were in G'ville, more than he has done in months. He seemed to tolerate it ok, but it really wore him out and made his leg muscles sore because he has lost so much muscle over the past several months from inactivity. So now we are in a state of waiting again.
We plan to have Thanksgiving with our daughter and her "significant other", (my term, not hers. I mostly  call him my big teddy bear.) I don't know if  either of our other two kids will be there but his mother will be there so we get to meet for the first time. Then Christmas will be here soon, then the new year, the n we move to ?????? who knows where. I'll definitely keep you  posted on that decision. It will be nice to know where we are headed. I won't have any new reports to give you next week unless something comes up, but I'll check in a time or two between now and when we go to G'ville for the biopsy/tests, just to let you know that nothing is happening. Enjoy your Thanksgiving week.

Follow up

As a follow up from last night, the result of Glenn's Dr. appt. today is that he didn't get treatment, but mainly because of his appt. in G'ville Wednesday. Before he is started on a new round of treatment, this Dr. wants to see what the Dr. in G'ville wants to do next, what tests and results come from it and what direction we should go in. Glenn  still has a low grade fever but I think the other main reason to hold off on the treatment is that some of his labs are not adequate to receive chemo. He did get a shot to boost his red blood cell count today. That count gradually falls and he gets the shot to bring it back up, and then it goes down again.
So was this morning a fresh and positive outlook from last night? Well, not really, but Glenn is feeling better than he did for the last few days. Every so often, ok quite often, I get to the point that I want to know how long, what to expect, etc. But I know that isn't possible to determine. I do look forward to being able to make a decision about where we are going to live, which we will do after Wednesday's appointment in G'ville, and after we know the results of any tests done then. We probably won't know that information until the following Monday when we go back to the Dr. here and find that stuff out. And be assured that you will know as soon as we know! Until then, reporting from Jacksonville FL in the lovely neighborhood of Riverwood in Nocatee, this is E. B. reporting.

A quick check in

I know it's been a while since you heard from me. This was a week off of treatment for Glenn so not much happening. This week he has been trying to fight off a virus, or something. He's had a sore throat developing into chest congestion and this weekend now a fever. We're holding off calling the Dr. because Glenn has an appointment tomorrow. Hopefully the temp. won't get any worse during the night. We're thinking that he may not get treatment tomorrow if he still has a fever. First thing in the morning we will call to see what we should do.
We have been at this for six months now. We don't have any idea how long we will have to continue. Tonight I think we both feel like we're tired of him being sick. Hopefully tomorrow will be a new day and we will have a better outlook on things. It wouldn't hurt to have a few prayers going up regarding that. Thanks.

End of round 4

Well, Glenn finished this round of chem and he has next week "off" from treatment. Then he begins again the following Monday, and that week is also when we go to G'ville to see the hema/oncologist to find out how Glenn's body is responding to the treatment. The edema is not too bad this time and hopefully with a week off it will stabilize. Thank you, God! He is going to see the Blue Angels this weekend. We were able to borrow a wheelchair, otherwise he wouldn't be able to go because he can't do much walking. As it is, it'll probably totally wear him out, but he can rest all next week. I get the day to myself while he is at the show, so my sister and I  plan to spend that day playing together.
That's about all I have to tell you. Thank you for your faithfulness. I hope you don't get tired of my thanking you because we are continually grateful for everyone's support and I want you to know it.

At a kind of crossroads

I don't have much new and exciting to tell you all. Glenn's treatment Thursday went normally, although the second chemo was held again to let his bone marrow get stronger. So far he isn't retaining much fluid as a result of the steroids. :-) We also saw his nephrologist the same day. That Dr.continues to talk more about dialysis and asking Glenn how he's feeling about it. So I asked the Dr. if he has a time line when he thinks dialysis will be necessary. He said anywhere from 3 months to 6 months to a year, depending how things go with Glenn's kidney function. Right now it is still getting worse. I'm really impressed with how Glenn is getting more and more adjusted to the idea of it, resigning himself to it, actually, but it's not such a terrible thing to him as it was at first. He also is getting more accustomed to being stuck with needles. Those two things are really minor miracles. He's come a long way in those areas. As far as how he actually feels, he is tired a lot still, of course, continues to use the electric carts at the stores, takes a few naps during the day, still feeling a little drugged up and a little unstable on his feet. But he  says he really has no complaints other than those minor things. We count the weeks and days until we go to G'ville to see his hemo/oncologist. Wondering what will be changed in that visit, if the treatment will be stopped, stay the same, or be increased, wondering if he will have a bone marrow biopsy, and if we can get  little more specific idea of how and where this is going. We go there in two and half weeks. Another reason for anticipating that Dr. visit is that we think we can make a decision from that visit as to where we should move. Leaving this place where we live now is kind of hard for me, as you might know. I have loved living here. I was encouraged the other day when I looked up how Abram took it when God told him to "leave your country, your people and your father's household and go to the land I will show you............... So Abram left, as the Lord had told him......". It had to be reeaaalllyyy hard for him to pick up and move from the place that he was happy and comfortable in to an unknown place. But there is no hint of him dragging his feet. He just did it. Glenn and I have talked about where all we have lived during the 31 years of our marriage. We have never picked out just what we wanted and then gone to find it. We have always had to rely on what God put in front of us, and it has ALWAYS worked out well. We have lived in homes we never would have chosen but were from totally adequate to very nice.Where we are now, all of our kids and our granddaughter and sisters live in town, as well  as our friends at church and in our neighborhood who have gone on this journey with us. And that's what we would be leaving if we move to G'ville. But if that's what's best then we will go.  As the song goes, this world is not our home, we're just passing through. Thank you all so much for coming with us, encouraging us along the way, and continuing to support us by your prayers to God for our strength and direction. You hold us up, we want you all to know that.

Back to treatment schedule

K. I told you I'd be here again so here I am with your new update.
Glenn had his treatment today, but one of his chemo dosages had to be held again because some of his labs weren't up high enough. But the steroid was increased again, boo. That means he will start swelling up and retaining fluid again. It's been nice while the edema has been down. We will have to start the balancing act again with the diuretics. bah humbug.
We went out looking for pigs in the neighborhood at dusk, (yes, literally pigs, wild pigs. They have been very active in the neighborhood this year digging up grass to find whatever it is they like to eat.) Glenn let me drive because he's feeling kind of drugged up. Well, we didn't see any pigs, but he sure was disagreeable. I told him I didn't like the way he is on steroids. If I said black he said no it's white, if I said up he'd say no it's down. So we went home and on our way in I told him to go sit down and watch his TV and shut up and leave me alone! (I was kidding with him, of course.) A few minutes later I realized that if the neighbors heard me they would really have a poor opinion of me and how I treat this poor defenseless, sickly guy. And they easily could have heard what I said since I said it as we were outside going to our back screened porch to the back door. Oh, dear. Oh, well. I gave them something to talk about. Tee hee!
We would like to ask for your prayers for direction of where we should move when our lease is up in Feb.  We are still considering whether to move to G'ville and have all his Dr.s at one facility there or to stay here in Jacksonville and move closer to the hospital and Dr.s office. It would help if we had some idea how long treatment will be, but there is no way for the Dr.s to be able to predict that. There is no normal schedule of treatment and response to go by. It's all a shot in the dark. So since God is the only one who knows that, we look to him to point us in the best direction for Glenn's needs. Thank you so much for your support.

A fever and a trip to the E.R.

This has been a pretty quiet week, since it was Glenn's week off of treatment. But last night when I was giving him a foot rub he felt warm and seemed a little lethargic so I took his temperature and it was 101. We called the Dr. and he had us come into the E.R. to check his labs and see what's going on. Of course, when we were getting ready to go, Glenn said he felt better. I'm sure you all know that syndrome. But we went in anyway. Stem cell transplant and chemotherapy patients are at greater risk of rapid growing infection so I didn't want to wait and see what would happen. I've heard stories and you just don't wait to see. It can get serious quickly. He was checked out and his temp went from 101 at home to 100.6 on admission and 99. something by the time all the testing was done. So he was discharged. Thank you God! Needless to say it was a long night: left home at 10 PM and got back home at 4:30 AM., you know, the usual E.R. schedule. Rarely does a need for a trip to the E.R. happen during the week days, for some mysterious reason.
Glenn starts his usual chemo treatment again Monday. So I'll be back here after that for a new update.
We continually thank God for all of you and your love and faithfulness in prayer.

Miss us?

Did you miss me? Friends of ours gave us a weekend "get away" this past weekend to World Golf Village, which is only about 30 minutes down the road from us, but away nevertheless. It was nice to get away for real this time. And we didn't have to travel a lot to get there! We went to the IMAX theater there for the first time. Glenn especially enjoyed that because it was a show on the history and progress of airplanes.
Glenn has been feeling pretty good the past week. His swelling continues to stay down and his lab values are steady. This is his week off of chemo of the 2 weeks on and 1 week off schedule. He'll start back on it next Monday, at least that's the plan. We did go for lab draws today. They are pretty steady for the most part. We think that his swelling being reduced is a result of the lower dose of steroids and the stability of his other labs is because he didn't get one of his chemo treatments last week. Anyway, he is feeling better these days.
We will go to G'ville Wednesday for a follow up appointment with the pulmonologist. Some spots were found on Glenn's lungs when he had his workup for the transplant but they weren't concerning to the Dr. at that time, but they want to follow up to see if there are any changes.
Thank you to you all who continue to follow the blog and keep up with how Glenn is doing. It really is very encouraging to us.

More pluses than negatives this week

Yesterday was another treatment day for Glenn. It was supposed to be a long day, when he gets two different chemos, but because one of his counts was too low, he just got one of the chemos. On the other hand, he  is off the strict watch for infections. That means he is not restricted in what he eats, and can go out in crowds again. He was happy about that because he has really gotten into eating fresh fruits, which are off limits when he  is on "infection watch" because of the bacteria that can be on the skins.
I think we are getting a handle on the edema vs. diuretics. His swelling is much improved and he was able to get into his "skinny" jeans today. He is able to walk better because his knees and ankles are much less swollen. He's a happy camper!
We had some friends over tonight, who live in Illinois and the Villages. They are staying at the World Golf Village this week, (in a time share), and because they have to leave Friday before their week is over they offered us to stay there this weekend. So we are getting a weekend "away" finally. It's only about 20 minutes away from where we live but it's away. We are so grateful for this opportunity; Glenn has wanted to go away for a weekend for a long time but we haven't been able to until now. God is so good! (And thank you so much, J&K!)

you can call this one scrambled brain.

Sorry, I've been lazy about writing an update. No excuses, just lazy.
Glenn had his Thursday treatments with no surprises this week. Oh, except that his counts are down far enough that he has to again be extra careful about infections: special diet, mask in crowds, antibiotics for prevention, (it's called prophylactic, but that just doesn't sound right). He does feel like he is less swollen this morning and lost 5 pounds, so that's a good thing, which has nothing to do with the sentence previous to this one. I think I need some more sleep, or something.
As one of two asides, we are experiencing a "Noreaster" which is basically a tropical storm moving onto land. It is supposed to last through Monday. Which means cloudy and periods of heavy rain with strong winds. Just thought I'd share that with you who live elsewhere from Jax. The other aside is that our daughter has a new, temporary position in New York which she started this week. She made it through the week and gets to come home every weekend. We don't know how long this project will last, but we know it is for several months. They put her up in a place in Manhattan with a beautiful view of the city, on the 25th floor. She is loving it, but I ask her periodically if I have to call the NYPD  when I don't hear from her or I hear something is going on up there. She is tolerating my protective instinct pretty well.
Glenn likes to go somewhere everyday and he didn't get to go anywhere yesterday so off we go to Publix and other unknown places.

What changes? Which meds? How much? Whew it's confusing.

My head is still spinning. Glenn had his regular chemo treatments today. He's fine, don't worry. It's just all these numbers: labs, chemistry, medication, dates. And it's getting frustrating that the oncologists and nephrologist are not communicating like they are supposed to be. We get labs done at one place and they don't send them to the others so it's no wonder his meds keep getting changed. The oncologist says to stop taking this and that, and the nephrologist puts him back on the same meds. His meds get changed about twice a week, and we neither one can keep up, even though I write it all down. It's hard to know whether treatment is effective, with all this miscommunication. I need a good night's sleep, and then to take some time studying all this and see if I can make heads or tails of it all, and see if I can come up with a way for there to be good continuity of care for Glenn.

and now for the rest of the story....

Ok, now I can give all the info I have at this time. We went to G'ville yesterday to see the oncologist and find out what the next course will be for Glenn's treatment. His labs looked pretty good except for his potassium and albumin. His potassium was a little too high! And his albumen was too low. So he received a dose of albumin via IV and some lasix to help get rid of some of the edema. The Dr. also said to stop the potassium, and start taking lasix again. Glenn and I just smiled at each other when the Dr. said to start taking lasix and the other diuretic he was taking before he went in the hospital last week. So, first on the diuretics and no potassium and edema got much better, then potassium was too low because too much diuretic so he was told to stop taking diuretics and take potassium and edema immediately got bad again, so he was to stop the potassium and start the diuretics again, but take potassium in a couple days. Hopefully we can find a combination that will stabilize his chemistry and get rid of the edema.
The labs I was waiting to get today had some good results: the count of the kappa chains that have been destroying Glenn's kidneys has gone way down and are near normal. So the chemotherapy treatment seems to be doing what it is supposed to be doing! This will not make the kidneys get better but the hope is that they will stay stable and not get to the next stage where dialysis is required. So the plan of treatment is to do two more cycles like he just finished which is two weeks of chemo and one week off. Then we will go back to G'ville and  find out what is next. The Dr. said that if the kidneys are stable Glenn will go on a maintenance dose of chemo. Don't know exactly what that will be, but we'll cross that bridge when we get to it. One step at a time. It's nice to get some positive news for a change. :-)

I'm waiting to get the rest of the lab results before I tell about our trip to G'ville yesterday. Stay tuned.......

Labs today

Today we went for Glenn's usual labs, but this is also his week off from chemo treatment. Blood counts continue to inch downward, and chemistry (that tells how the kidneys are doing) are inching up. Both of those results are not what we hope for. We go to G'ville Wednesday to see the oncologist there and find out the next plan of treatment will be.                                                                                                                           Glenn wasn't able to go to church yesterday or go to our Sunday evening small group so friends from there came over this evening with pizza to share and to visit with us. See how loved we are?! I think they knew we are having a down time right now. That was such a sweet gesture to let us know that we are loved and thought about even when we can't be with them. It was very encouraging for us. Every message, card, visit, prayer encourages us so very much. I want you all to know that.

Glad that's over

We are home now, got home late this afternoon. Glenn was discharged this morning and had to go straight over for his scheduled treatment, (which is in a building adjacent  to the hospital). The oncologist  who discharged him wanted him to get right over for his treatment, even though Glenn's appointment was for later. But when we got there, the Dr.s were all gone to lunch so we were told to go get something to eat and come back. Instead we went to the nephrologist's office to see if we could see him. Luckily for us, it was a slow day there and we did get to see him. We needed to talk to him about managing this edema that keeps happening because the oncologists take Glenn off of all his diuretics because they are not good for the kidneys. So anyway, we got to see him and get that dealt with, then went back for the treatment. When my mind isn't so foggy I'll try to explain all that about the edema/kidney problem. But right now I am heading to my bed. I've missed it so much this week. I'm grateful that I am allowed to stay with Glenn the entire time he is in the hospital and that they provide a recliner for me to sleep in. But anyone who has slept in those recliners at a hospital knows it's just about impossible to stay comfortable in any position in those chairs for any length of time. I'm not complaining, honestly, just glad to be back to my own bed. So g'nite again and to everyone who has been keeping up with us, praying for us, sending encouraging, (and funny) messages, we thank you all so very much.

And MORE potassium again

Glenn's potassium did not go up from yesterday despite all he has gotten. So we will be in the hospital for another night and he will get more potassium. Dr. has no explanation for this. So once again we see that Glenn is not normal ;-) . So why should we expect a normal response to this or anything else?! We are sooo thankful that we got this private room. We didn't expect to be in it for another night so it was a better idea to move than we realized. Thank you, God!

My brain is tired so I don't have anything else to tell you right now. Just wanted to update you on today's developments. 

Another night in the hospital

We are in the hospital for another night. Glenn's potassium level was slightly better, but not enough to be released so he received more potassium today and we will find out in the morning if his level is ok or if he will need more. I'm guessing that even if he has to get more potassium he may still be discharged tomorrow after his levels are checked again. 

Glenn was awake literally all night reading a book, (and I didn't get much sleep either.) We were in a small semi-private room and during the night another man was admitted to the other bed, and he was pretty sick, so the situation was not conducive for getting rest of any kind. During the day today the roommate  was having some personal problems with family members. So there was no napping today either. Glenn's oncologist felt that he was out of danger enough that he didn't need to be monitored on the telemetry unit any more so he said he would get Glenn transferred to the oncology floor. We got to the new room about 10:00 tonight and instantly we felt how tense we had been and how relieved and relaxed we were in the private room. Glenn is out like a light now and I'm sure he will have no trouble sleeping through the night, nor will I. With that said, I'm going to settle in for the night. G'nite.   tbc......

An unexpected lab result

Today was treatment day and we went as usual. While Glenn was getting his treatment the Dr. came to talk to us and said that Glenn's potassium level was dangerously low and he was admitting him to the hospital for hopefully one night to get it to a normal level. The danger is that when the chemistry is dangerously imbalanced it can affect the heart so he needs to be monitored while he receives the potassium and magnesium by IV. Glenn amazingly never has had any symptoms for as low as it is. When I texted his sister she called and said she is also in the hospital, (different one), because her potassium was dangerously high! (She is dealing with a different kidney disease and has been without kidneys and on dialysis for several years).  These kidneys of our are amazing organs and have a big, complicated job to perform. It's amazing that they work as well as they do in most of us. So we're here in the hospital and he's getting his potassium slowly infused. We're hoping he will be discharged tomorrow. I'll let you know what happens.

Just call us old retired people now.

Glenn had his chemo treatment today with no problems. He also lost two more pounds for a total of eight in the past week. Yea!!!! He says he feels the difference, although he still is very swollen. He has several more pounds to go to fit into his clothes again. (And pb, thanks for the offer of your fat pants, but I'm sure he would know a difference between men and women's pants, so I'm pretty sure we won't taking you up on that offer, but it was thoughtful of you to offer!) There isn't really anything new to report on how he's doing. We seem to end up staying gone for several hours when we go for  his treatment, as much as we intend to get home sooner because he needs to keep his legs up as much as possible to try to keep the swelling down. After he was done with treatment today, we had a couple errands to do, and we met his sister for lunch/dinner. We got almost home when we remembered we forgot to get a prescription filled while we were in that area, so we had to turn around and go back for that. It was a new prescription so we had to wait for it to be filled. That all added about  another hour and a half because we live so far away from everything, so we were out for seven hours, too long for Glenn to have his legs down. We have to figure something else out to keep him home and feet up more than we have been able to.
Last April we did not know our life was about to totally change as it has since then. When I began this blog I titled it "Glenn's new role as patient" but little did we know how prophetically accurate that was. Glenn has now been designated as disabled and has been able to work nearly none at all. We have been living off of people's love sacrifices until  the disability benefits begin in November. He is now home full time and my new role to him is care giver to different degrees depending on what's happening each day or week. We are looking for a more affordable place to live when our lease is up in February and I am downsizing our stuff in preparation for that. Things are totally changing for us. We are a prematurely retired couple now which isn't a bad thing at all. He is much more relaxed and trusting in God rather than his own talents, because he has been forced to be, but that's a good thing as well. So much is different for us since April when we started this adventure. We never could have foreseen in what ways our life would be changing. It's all good, and we are enjoying this new life, really!

Nephrologist visit

The results from Glenn's visit at the nephrologist today are that his kidneys are holding their own with a slight increase in functioning. That's a positive thing. The nephrologist and oncologist are pretty much in agreement that he is stable, not getting worse and with a slight improvement. So nothing they are jumping up and down about but at the same time are a little encouraged. I stress all that because that was their reactions.

.......or not.

After researching and crunching the numbers, Glenn has realized that the RV venture isn't possible. Again, I have mixed feelings, but it certainly takes a lot of pressure away about getting rid of stuff. But because I had to think about purging belongings down to a minimum, I have gotten into the clearing out mindset. Having just the essentials is very attractive to me, and looking ahead to having to pack and move, it certainly would make it a less stressful event. So now our hope is that we can find a place that is cost efficient enough that we can take a few trips.
Today we went to the oncologist for Glenn to resume his chemo treatments. Our Dr. said Glenn will have another round of two weeks of treatment and a week off, and during that week off, she wants Glenn to be seen by our Dr. in G'ville to evaluate what we should do next, depending on how his body responds to this next round of treatment. And tomorrow we go to the nephrologist  to see how Glenn's kidneys are doing. We never did get the results of the labs that were done in that office so I'm anxious to see what's happening in the kidneys. I'll let you know tomorrow what we find out from the nephrologist. That's the big concern and focus for all this treatment. We are trying to keep him off of dialysis, as you probably know from previous blog entries. Because he is swelling so much I am very concerned that the kidneys are getting still worse. I don't think steroids are causing swelling to the extent that he is having. It has to be addressed and dealt with in order to keep him out of congestive heart failure from too much accumulation of fluid backing up into his lungs. So there's your new prayer assignment.
And again this past week, God continued to take care of our needs. To God be the glory! And yesterday a friend from church called and asked Glenn if he would participate in something with him: he wanted to know if he could call later in the day when the small group bible study met and have them sing to him and pray with/for him. And he asked Glenn, "how are you really doing? and what can we do for you?" God continues to move and work through his people. And we continue to be humbled because of our unworthiness of all the unconditional love showered on us.

"Traveling" through our life together

Ok, I'm better now. Thanks for putting up with me.
Glenn had labs done today and there is a slight improvement in Glenn's chemistry regarding the kidney function   :-). He doesn't have to have any treatment this week and I am thinking the Dr. will call this week and let us know what the plan is for next week. Glenn did have labs done by the nephrologist but we don't have the results of that yet; hopefully in the next day or two. That's the report I especially look at for kidney function so I'm anxious to get those results. Glenn has continually gained weight at each appointment which we are supposing is retention of fluid as a side effect of the steroids he has to take. His legs are as swollen as I have ever seen them. When he is up walking around they get more swollen and he has to keep them up as much as possible, obviously. But we have been out a lot on long rides, (one of his favorite things to do) and going to the grocery store, etc. so he doesn't have his legs up a lot during the day.It's kind of a "catch 22" because it does him good to be up and out but not so good for the swelling. And it's not just his legs; he acurately describes himself as shaped like a pear. We got rid of all his "fat" clothes after he lost his weight so he's limited in what he can wear, which is one pair of jeans that squeeze his stomach.
So now I will share what I was eluding to in the last entry. It looks like we are going to move into an RV in a few months when our lease runs out on the condo. We have wanted to go RVing but cost has always been the "road block" (no pun intended) to doing that. But Glenn came up with the idea of living in and RV last week, which would take care of our need for a place to live and our desire to have an RV. Of course, if this does play out, we will NOT have one of those big fancy ones that cost more  than a house. We have to consider that I'll be driving it at times when we do get to go traveling so it can't be a monster. Just something that will accommodate a couple of older people. We don't have a plan for how long we will live in it, we'll just see how it goes. He is really getting into this idea and is excited about it. It's kind of a "bucket list" thing for him, and can facilitate other things on his list, if he stays well long enough to do some traveling. I am have very mixed feelings. I have wanted to have an RV, but it wasn't necessarily my desire to live in one for an extended amount of time, and I love living where we are now and will be very torn away from here when we move. But I talked to God about it and told him that I see that I was holding on fast to staying here and wasn't open to what God wants for us. So I told God that I want to do what he wants me to do and go where he wants me to go. And don't you know it was that day or the next when Glenn came up with this idea. So our  next prayer request is that Glenn will stay healthy enough and stay off of dialysis long enough for us to be able to travel some after his treatments are done.Thanks very much for your prayers, in advance, and for your on-going prayers for us.  And  thank you so much for your  continued support for us in your  cards, encouraging messages, phone calls, etc. that you send constantly. That keep us going knowing that so many people are caring enough to keep up with us.

:-( That's what you will get in this post.

I have to say that this week has been one of our more stressful weeks. The past 3 days have been Dr. appt.s, treatments, and out patient surgery for the port placement. Being a difficult stick for someone who is "allergic" to needles/pain, I mean really hating needles, Glenn has been stuck many times this week. The  purpose of the port is to make it easier for the nurses to access a vein for his chemo treatment. But that was quite traumatic for him today, since he just had it placed yesterday and it is very tender. They don't use the port to draw blood and he has to have blood drawn every time he goes and today he had to be stuck a couple times to find a vein for that, because he is so swollen from water retention.  It would be easier for everybody if I could just take some of those sticks for him. But he is very pleasant to the people who have to hurt him. In that aspect he is a very good patient. He even gets them laughing in the midst of it all.
I have to keep reminding him that he feels lousy because he is on chemotherapy. He really does need to be reminded. I told him he does have a choice: he could stop the therapy and feel worse as his kidneys fail more and more; he chooses to continue the chemo. Part of his feeling bad is because he is so swollen from the water retention. He has gained close to 25 lbs. in the past couple weeks and it's mostly, if not all, water.
Ok, I'm  being negative, I admit. I'm just feeling like venting, and I know you all will give me a little space to do that because everyone has been so supportive of us through all this adventure. So thank you for letting me be negative and vent. Hopefully this will be a restful and renewing long Labor Day weekend, for all of you, too.
(In the near future I may be sharing with you a new adventure for us in the middle of all this going on. Stay tuned......)

Another week and more treatments

Yesterday was Glenn's third day of chemo treatment and it was a looong day, longer than we had anticipated anyway. His chemistry was encouraging in that the kidney function numbers were better this time. His blood count levels, though, started dropping again, not to the point of needing any blood products yet. He grudgingly decided to have a "port" placed in his upper chest because the nurses have a hard time finding a vein for infusing the treatment. They have been asking him about getting a port every time we have gone and he decided to do it instead of being stuck several times to find a vein each time. It is along the same lines as the central line he had for the bone marrow transplant but there will be no lines hanging out, it is just a port that has a catheter attached that is threaded into a vein and the port itself is covered by the skin. So there will be a stick to access it but at least they won't have to dig around to find a vein. He is having that procedure done tomorrow morning so it can be used Thursday for his next treatment. The treatments are having their effect on Glenn: he is getting progressively more tired, although he has spurts of energy in between his exhaustion. But thankfully he hasn't been nauseated yet. He went out to take his morning walk today and got as far as the street and slowly came back home. But this afternoon we went to the grocery store, of course with him riding the scooter in the store. But that's better than not feeling like getting out at all.

And to be sure that God gets the glory he deserves, just want to report that he is continuing to meet our needs daily in  different ways each day. How could we ever live without him? We couldn't! Thank you all for appealing to him on our behalf. 

Marching on

Today we went for Glenn's second chemo treatment. So far he doesn't feel badly. His blood counts looked a little better than last time. But his chemistry that monitors his kidney function continues to slowly rise more, (that's a bad thing, blood counts going up is good, chemistry going up is bad.) And he gained more weight from Monday after he had gained weight that day, too. He is really swollen in his legs and his belly. That is an indication of poor kidney function. He's so afraid that he will be advised to start dialysis. We'll have to make some decisions when it comes to that. But let's just pray that the chemo treatment will do its thing and will stop the kidney damage from progressing before that comes about. So that's your next prayer request from us. And please join us in thanking God for the way he continually meets our needs in new and different ways all the time.

Plan B has begun

Glenn had his first chemo treatment of this new plan today and so far so good. He says he feels kind of weird but  not feeling nauseated or any of the side effects we will be looking for. He will have chemo twice a week for two weeks, then a week off. Then another cycle like that and after those two cycles he will be evaluated to see if this treatment is working or if it will need to be adjusted. We still would feel more comfortable doing this in G'ville. I don't know whether or not he is going to pursue that some more. There are certainly pros and cons for being in either place. One of the cons of having treatment here is that it costs a co-pay every time we go to the office here  in Jax. But we have to say that God has continually provided for our needs and has poured out his love on us through his people and their loving compassion and generosity. The thought keeps going through my mind of the scripture that says "Let us not love with words or tongue, but with actions and in truth." We continually are being loved with actions and we are reassured that we don't have to be afraid of being in need.
We continue to be so thankful for all of you who are praying for us and supporting us in every way you can. We really appreciate all of our friends.

A plan in place

We just heard from our Dr. office here in Jax. They talked to Dr. M. in G'ville. Glenn will be starting chemotherapy this Monday morning. He will get two kinds of  chemo twice a week via IV and a steroid in pill form once each week and again in the third. Then the same cycle will be repeated again. After the two cycles  of treatment he will be evaluated to see if the treatment is working. That might not be totally accurate but it's pretty close. We'll get a schedule on paper when we go this Monday. Glenn is ok with all this so far. We don't know how severe the side effects will be yet. We will also get information about that Monday. I'm very relieved to know the plan. At the rate his kidney function is diminishing I was concerned that he wouldn't get started on treatment soon enough because the Dr. in G'ville seemed urgent to have him started on treatment as well.  Such mixed emotions right now........

Argggg!

We went to the oncologist here in Jax. today to find out what the next plan of treatment will be. And it will be:.....................keep waiting for the answer because that's what we found out  :-/    I was sooo frustrated! The Dr. in G'ville said he would be in contact with the oncologist here for his recommendation of treatment. But apparently nobody at the Jax office has talked to him. So we are SUPPOSED to find out something by the end of the week after the Dr. here contacts the Dr. there. Ironically, I was just reading my journal this morning about the days and weeks before Glenn had his stem cell transplant and I was trying so hard not to be impatient while we were waiting to find everything out. Apparently I will be having to work on that the rest of my life, if I don't learn patience in all this. Glenn is not feeling at all like I am. He's disappointed that we didn't find anything out today, but it isn't bothering him like it is me. THAT is amazing because not that long ago he would have been very annoyed at the situation. He is still feeling ok, but he is swelling quite a bit a  lot of the time, his legs, hands and under his eyes.
Several people have responded to his post on facebook and have helped us out financially, and we are sooooo appreciative for that. We should be ok soon when disability and some other stuff starts coming in. Just needing the gaps filled until then. We feel so loved and supported by everyone's prayers, encouragement, cards, etc. that you all have sent our way. It's amazing how much it helps our spirits with each expression. You may not feel like you are supporting us much, but please know that we feel every prayer prayed and are lifted by each card received, and message sent. Thank you all so much for being there for us through all. We love each one of you.

A new road to take

Glenn had his first follow up visit in G'ville since his hospital stay today. It seems that the stem cell transplant didn't do what it was supposed to do, at least not yet. It still could change, but it's not looking good right now. the Dr. said there was a response right after the transplant but it didn't last. His kidney function continues to deteriorate and the Dr. in G'ville will consult with the Dr. (hematology oncologist) here and recommend a series of chemotherapy treatments to start soon. The goal is to avoid dialysis if at all possible. Glenn's kidneys need prayers from everybody who prays. He seems to be taking all this in stride. He said he should be upset by the prognosis, but he's not at all. His feeling is "it is what it is", although he dreads having to go on dialysis and hopes and prays that that won't happen. The reality is that if it doesn't start getting better, or at least stay where it is.........well, you can fill in that blank. We are surprised at this news because Glenn has been feeling better and doing more of his normal activities: going to church, running errands on his own, etc. He did file for disability and has been approved, although he won't start getting his benefits until late November. (He has posted a request on his web site www.glennboyles.com for anyone who would want to contribute until he starts getting his benefits. He hasn't been able to work since his treatment. Just go to that web site and it will explain what to do.) When he starts the next treatment he won't be feeling as well as he has been. Bummer! I want to be mad but I don't know who to be mad at. Things were starting to look better, but now we start down another road. So you now have our most recent prayer request update. And we really do realize the benefits of all the prayers coming our way. We are so grateful for your love and support.

Checking in for a report for the week

I was holding off making a new entry until we found out what all of Glenn's tests have shown so far. We are still waiting for one, but as far as his kidney function, there has been no change, and if anything a slight increase in one of the values which we hoped would start going down after treatment. He goes back to G'ville next Wednesday for his follow up after treatment. I don't know if we will find out anything else there or if the Dr. just wants to see how he's recovering. The nephrologist today seemed disappointed that there hasn't been any improvement since the treatment, but it may be too early still to know for sure if it has helped. If his kidney function continues to decrease he will have the option to go on dialysis in a couple years or so, give or take a year. Hard to predict what the kidneys are going to do at this point. Glenn isn't discouraged by the nephrologist's report. To him, we'll just take what comes. He does want very much to travel around the U.S.before he has to go on dialysis. That's a prayer you can pray for him. It's basically his bucket list. As I said, he isn't discouraged, just looking at future probabilities realistically. Also, his blood count continues to drop but still it hasn't made him feel bad, so the blood transfusion is held off again.
Besides that, he is recovering well with more energy and more hair coming in. No black curly hair. It looks like it will be the same as he had before he lost it. He has been set free from wearing a mask in public (yea!!!) and has been able to drive the car himself to do some errands. He was approved for disablility, although it won't kick in until the end of November. He's also looking into some other possibilities for income. I really hesitate to get a job because I want to be available to go with him for Dr. appointments here and in G'ville.
Thanks for all your prayers and concerns for us. That really has carried us through all this with peace in our hearts and appreciation for all that God has done for us.

No transfusion this week

Glenn was quite relieved at the Dr. today. Although his labs indicate he needs blood, and it continues to drop, because he doesn't have symptoms, ie dizziness and exhaustion, he doesn't need to get any blood. So he is extremely anemic but the rest of his lab numbers are very good for him. I think that will allow him to be less protective of catching a virus or something. He is also getting some fuzz on his head. It's cute. He is tolerating longer stretches of every day activity these days as well.
Tomorrow Glenn turns 60 years old. We will have to keep celebrations low key right now but we will have to go on a boat ride or something at a later date. Originally I wanted to take him to the Grand Canyon because he wanted to stand on the glass overlook and address his fear of heights. I'd still like to do that at some point. For now he is just enjoying his new recliner.
Thanks to each of you who have been faithful in keeping up with Glenn and sending encouraging words, as well as your prayers.

Slow recovery

Hi Sue, (and anybody else who is still reading this), I think you're the only one who has kept up with this blog. But I am going to continue with it, if for nothing else than to keep a record for myself of how things are going.
We went to the oncologist for Glenn's weekly lab checks. His hemoglobin and red blood cells continue to drop so we talked to a Dr. there and he said it wasn't absolutely urgent that Glenn get a blood transfusion but next week if his counts are lower it would be a good idea to get some blood. So that's what we're looking at this next week. Besides that, Glenn has felt ok, not ready to run any races but he isn't quite as tired as he was the first few weeks after we got home from the hospital. We were planning on him going to church this week, but after getting some medical advice, we decided he still shouldn't be in crowds, even if he wore a mask. :-( . Best to err on the safe side.
Glenn applied for disability and we are waiting and hoping to hear something soon. Because his disease is treated the same as multiple myeloma and there isn't a billing code for his disease it is processed as multiple myeloma and that disease is dealt with as a "fast track" case and supposedly they get it through in a month. We'll see...... while we continue praying for results soon.

How's Glenn doing, you ask?

Glenn had labs done today and he was so relieved that he didn't have to have a blood transfusion. We will have to go every week to have his labs checked to monitor how he is doing. I think we might be able to find out next week how his kidney function is doing and possibly if the treatment has had an effect on his disease based on  tests that he turned in a specimen for today.

I've given him a little nudge to get out more, so one day we went to the bank and the grocery store, neither of which is busy so he could go to those places since there weren't crowds there. When he goes in anywhere he always has a mask and hat on, and often he wears his sunglasses. When we went into the bank, even though they know him, he looked enough like a bank robber that it scared one of the girls thinking they were going to be robbed! She was frozen for a few seconds until one of the other women said hello to him and said his name. Priceless! I also got him to go out another day to the new club house here, where we live, for him to get his own private tour, (from me. It is actually very impressive and I recommend anyone in our age group to come and see it and the neighborhoods here as well.)

I have detected a very tiny growth of hair on his head, not that can be seen unless you look at his head from  side angle. Can't tell what color it is yet or if it's curly or straight. But I'll keep you posted on that development.

As an aside, we now have all three of our kids living here in town as Joey got home from California and out of the Army this past week. One of the many good things about that is that I will get to see our granddaughter more often now and I can send her home with her daddy when I'm done playing with her! I love spending time with her, she is so much fun to be around! But she also tires me out being so busy ALL the time.

A day of Dr. appointments

 Glenn saw his nephrologist today and we got the lab results from last week. His kidney function is the same, no better and no worse. Other than that, nothing new to report there. He also was able to see the oncologist. That office is in the same building as the neph. so we went up there after that appointment to see if they had any cancellations. They were finishing with their appointments and were willing to see him at the time. It turns out that we were supposed to be going there weekly to have his labs checked. I was right! He did need to be checked frequently. His labs looked pretty good, but he is anemic and may need to get blood next week when we go back. At that office visit I ran into a couple who we met at the Hope Lodge in G'ville when we were there. I asked the husband how his wife is doing. He said they've done everything that can be done for her. So they are just making the best of their time together now. She is one who pushes herself to go and do as much as she can. I was amazed at how much she was doing when we were together at H.L. I'm glad we got to know them.
Well, we have a big July 4th weekend planned: lots of resting and staying out of the sun :-). We might eat a hot dog in honor of the holiday!

Just in case anybody is still checking here

I don't know if anybody is checking here occasionally, but thought I'd fill you in, in case anyone is here.
Glenn has been  his usual tired for the last few weeks, although he doesn't sleep as much during the day as he did when he first got home. He takes a 15 minute walk each morning before the sun comes up, makes his breakfast then sleeps for a few more hours. He can have visitors, and has had several. On Father's Day all three kids and the granddaughter were over for a while, one Sunday we took a big risk to have 7 people from church over, (Glenn wore a mask for those two visits), and this week we had our friends over who we met in G'ville who had the same kind of treatment there at the same time Glenn did, so we got to commiserate together and compare experiences.
We go to the nephrologist tomorrow to see what Glenn's lab work shows, which I am very eager to see. When we were in G'ville, Glenn's blood was drawn every night and reported first thing every morning which gave us some security to know what his condition was doing. With Glenn being so tired still, I am eager to know if he is anemic or if he is recovering normally. I am also anxious to go to the oncologist here to see how she feels he is doing. We didn't realize he was supposed to be followed up here with his oncologist until I called to find out.  We were probably told to but it didn't stick in the brains. When Glenn was being given discharge directions, he was just finishing getting platelets and we were in a rush to get to the Hope Lodge before we lost the room, so I failed to take notes. So we will be following up as soon as we can get in there.
And I'll let you all know what we find out. Thank you so much for caring to keep up with him.

A quiet week

This week for Glenn was another week of resting, sleeping and eating, with a little bit of work sprinkled in. He can sit for about a half hour at the computer before he has to lay down and rest and/or sleep again. He talked to the SS office to see if he qualifies for SSI, but he was told that we make too much. So I guess to qualify you have to live in a nice, paid for, tent and have no car payment. He is now applying for disability. That requires that you are going to be disabled for at least a year. So we need to get letters from the Dr.s to verify that. That's a new prayer request--(not that he is disabled for a year but) that he will be approved for disability---soon.
That same day we had to do a couple errands for him, and then I took him to the furniture store for him to pick out a recliner for Father's Day/60th birthday from the kids and me. He had to be "fitted" for one that was  comfortable. He picked one out and it will be here in about a month. He wanted something he could rest in but not be on the couch all the time.
I am curious to know what his lab values are. When he was in the hospital we got a report everyday which gave me a sort of security that we knew where he was all the time. But we won't know what his labs are for another couple weeks. His blood  pressure is not what would be considered normal, but is at an acceptable level, controlled by four blood pressure meds. One good thing is that his swelling and edema have stabilized without any medications.
So he is just resting at home, holed up from everybody to avoid any exposure from infections, and because he just doesn't feel like doing anything else for now.

No title because there's no brain energy

We've been home for a week now and  it's been quite uneventful. So I'm writing to let you know that there is nothing to tell. Really. Glenn has been tired and resting pretty much all week. He has probably been in his office for a total of maybe one hour. He says he hasn't had  a single idea. If you know him you know that there had to have been a part of his brain that was greatly affected or the idea cells must have been in his hair, since that's gone, too. Just a guess.
And now I know that sympathy pains are real. I've been inexplicably exhausted ever since we got home, with no relief yet. I feel like Glenn says he feels. I don't have any creative thoughts, so that's all for tonight.

Home again, home again.....

You may have noticed that there was silence here yesterday. We were quite busy packing, cleaning our room, saying good by to new friends, including the turtles and gators at Hope Lodge, and coming home, unpacking, then having our sons and granddaughter and some of their friends over. Whew! It was quite tiring for us both: Glenn was worn out from just watching and riding home in the car, ( he was not allowed to do any of the physical work. nor did he have the strength to do any). It's a lot of activity for him.
We are still battling the edema in his legs and are anxious to get back to the nephrologist to get his meds straightened out for his kidney disease.
For Glenn, leaving was really not a big deal. It was just time to go. On the other hand, as many of you know, I am not a crier. BUT yesterday brought the tears; we were leaving our security, our new friends with whom we shared the process of a significant life challenge: sitting up at night drinking coffee, playing solitaire, putting puzzles together, meals fixed and shared together, Dr. appointments, treatments, infusions, postponed discharge dates, meeting each others' visiting families and friends, and more. For me, it has been an experience that has left a deep impression on my heart. So much comfort during a difficult time, that made it easier to go through. We'll keep in touch with some of the new friends, but it won't be the same as living together every day and sharing our lives. Needless to say, we bonded with each other in a relatively short time. I believe it had a greater impact on Glenn than he realizes.
I probably won't be posting here every day, now that we are home, but I will keep you all  up to date on Glenn's health, as we go to the Dr. each time and the results of those visits. We aren't at all finished with this process and will see, in the next few months, what the impact of his treatment has been. So keep checking the blog and you can keep up with how he's doing. Knowing that so many people have cared enough to keep up with him here has been very encouraging for us. Keep in touch and so will we.
P.S. The Mah Jongg ladies did a fantastic job cleaning our condo before we got home, and provided groceries for us when we returned home. I hope that we are able to do for others as you have so graciously done for us.

Homeward bound

Glenn's Dr. visit this morning went well. He told Glenn that he can go home, and we could go right over to get his central line removed. Kind of funny because Glenn and I looked at each other in surprise; we were expecting to go home soon but I  guess we expected to be told that we would have to schedule the line removal for next week, but they had already taken care of that for us. So we went right over and got that done. Then we celebrated by going to Wendy's for hamburgers and fries, which we haven't had in a long time. (Next to the cafeteria is a small food court with Wendy's and a few other food places.) The salt hasn't helped his edema at all, but, he can just take some more lasix ;-) . Our eating habits have been "have what you want and what is available" so when we get home it's back to healthy eating, although Glenn isn't supposed to do any dieting right now.  

I forgot to share about the little girl I met yesterday, and her mother. Mom came in first and was given some forms to fill out. She had a scarf on to cover up her bald head, and she had a line like Glenn's only in her upper arm, which probably means that they are exhausting many of the other sites to use. She was having a very hard time seeing what she was reading, and at the same time was falling asleep while she was filling out the form. Then her little girl and grandma came in. That little girl looked a lot like Shirley Temple with her head full of curls. One lady smiled at her and asked her what her name was, but the little girl just stared at her like she was trying to figure out what that lady was. Then she came over and sat down next to me and asked my my name, and the name of the man sitting next to me, (who was not Glenn). I told her his name was Skip (we know him from the Hope Lodge). She said no and pointed to her mom and said "that's Skip". I guess her mom's name was Skip. I asked her what her name was and she said, "Me Katie". She gave me her little neon green wrist band that had a peace symbol on it and said, "Don't lost it. And don't let the dog bite it." She did a lot of other cute things for all of us. But what was notable to me was that she seemed to be oblivious to her mother's seemingly serious condition. She just played and talked to her mom as any little child does, asking for juice, etc. It was really sad that there is a strong possibility that her mom won't see her grow up. And the grandma, how she must be feeling. You always forget your problems when you see someone else in a much worse situation. There are just so many experiences when you go through  this kind of thing. I hope it all is etched in my mind and heart so I don't lose the lessons learned.

Anyway, we will be going back home tomorrow and start the new adjustment to "normal" life. Prayerfully with  many lessons learned and hearts transformed to be more like our brother, Jesus.

Looking ahead to going home

I didn't make an entry here last night because yesterday was pretty uneventful. Today Glenn had an appointment at the clinic to see what his labs showed. He still has some out of whack, but we are tweaking his meds to try to fix that. But most of it looks good. He goes back tomorrow morning to get rechecked. The P.A. (physician's assistant) feels like he should be ready to be discharged. But, we have to see if he can get his central line removed tomorrow, or if we will have to wait until the beginning of next week. (One day at a time, remember?)
Glenn slept much better last night and was up a lot of the day today. That's a big improvement. He took an anti-nausea medicine with his nightly hoard of pills and we think that might have helped him sleep for 6 hours straight. He was able to go back to sleep again and sleep another couple hours. We're wondering if that is what made the difference, or if his body is just making so many good cells to replace the ones that were destroyed with the chemotherapy that he is feeling the good effects. Whatever it is, he was glad to be awake and up for a lot of the day. We had a visitor from Jax this afternoon. It was so nice to see him, (an elder and great friend from church) He was playing hooky from work, but don't tell him that because he is his own boss and we don't want him to get in trouble with his boss.
Seems like several people here are being discharged tomorrow and a new round of residents and caregivers is coming. I was wondering if the new people would make friends here, but this afternoon I saw some bonding happening. Good to see. I feel like I'm kind of a "mom" for the new ones, (even though several are older than I am), and want to make sure they adjust well and have a good experience here, as we have. We have gotten accustomed to life here and it's going to be another adjustment going home again. As I have expressed before, we have made friends here with whom we have a common bond and speak the same "language". We will be making the adjustment back to "normal" life and that's a little scary. Here, we aren't shocked to see each other with bald heads with hats to keep them warm, burn  marks on faces and necks from radiation therapy, having conversations with people who can't talk because of damage from cancer and treatment, darkened skin from chemotherapy, bodies wasting away while hoping to beat their disease. It's all "normal" here. Out there everyone looks pretty healthy so we look kind of freaky and different. We walk slow and humped over from weakness, sometimes finding the energy to smile. So that's why we feel a little insecure leaving here. Plus, we have the medical care just up the road in case of any unforeseen change. They are familiar with us and our diseases and know what to do. But, I'm sure we will learn to adjust back to "normal" life outside of our cocoon here. Just know that when you see us, we are still the same people you knew before we came here; we're still the same inside even if we look a different on the outside.

Another day in our "one day at a time" life

We went to Glenn's follow up appointment this morning. His labs looked ok but not good enough to cut him loose to go home. We go back Thursday to see how they have changed, whether there is a trend up or not. If things look good Glenn will be discharged to go home. THEN we have to make an appointment to have his central line, (in his chest) removed, which can happen as early as Friday, or at the beginning of the following week. So, we're here until at least Friday, if not early next week. We continue to live by the rule of one day at a time.
I was surprised that his red blood count, and hemoglobin were as good as they were considering how tired he is. But apparently this is to be expected as a result of the chemotherapy. His legs got really swollen while we were waiting at the clinic to see the Dr. We will have to juggle with the lasix until we can get the swelling under control. This is a result of his diminished kidney function.
I took the afternoon "off" and just walked around the mall. Just needed to get some away time. I tried to get our friend to come too, but she couldn't get away. Because our husbands have been so wiped out, we haven't gotten to spend any time with them (our friends) recently. Kind of miss that connection, although being at the Hope Lodge is good because we feel at home with the other bald headed, tired and weak people and their caregivers. We share our "war" stories and help each other along on our journeys. We are happy with the ones who get to go home, and wonder how others who went home are doing. Some have to stay several months, while others only are here for a few weeks. I especially hurt for the ones who are having treatment on their mouths or throats. They can't enjoy the meals we share together and often can't talk. They usually pretty much isolate themselves. And there are those who refuse to give up or give in, but keep going and keep trying other treatments,sometimes experimental , because they have tried everything else available. They live life as normal as possible, while not being naive about their probable outcomes. It just amazes me to see and experience how these people live every day of their lives as though they have no problems. Their dealings with their teenagers' daily trials, their grown kids' dealing with life,a and their enjoyment of their grandkids are just as normal as yours and mine. Life just goes on as usual for them. Very inspiring.

Memorial Day

Another lazy day today. But productive: I got the laundry done. Exciting, huh?
Glenn continues to be extremely exhausted. We are curious to see what his labs are in the morning at his appointment. I can't imagine that they could be very good, considering how tired he is. Swelling has gone down a bit since he got started back on lasix, but has a ways to go to get back to normal. He had enough energy to make himself take a shower today. That should give you an idea of how tired he is. When I commented on the fact that his beard hadn't grown out much, he said he didn't have the energy to grow a beard. I thought that was a good one worth noting.
Staying at the Hope Lodge is bad for my health: we had a home made meal of garden grown corn, black-eyed peas, okra and tomatoes, eggplant casserole, porcupine meatballs, watermelon, cantelope. pear halves stuffed with some kind of white cream stuff,  banana pudding, Boston cream pie, brownies, apple dumplings, ummm, I think that's all. And, of course, sweet tea. How do you not overeat with all that food served? And you can't just choose one dessert. You have to try a little of each one. We are lucky to be at the Hope Lodge at same time some good Southern cooks are also here.
Now I go to rub Glenn's back and neck to put him to sleep.

...yet I will rejoice in the Lord. I will be joyful in God my Savior.
The Sovereign Lord is my strength;
he makes my feet like the feet of a deer,
he enables me to go on the heights.
                               Habakkuk 3: 18-19

Lazy day

This is a short day because we slept! I slept more than Glenn did: I slept till 11:30, fixed breakfast,  then slept again from 1 to 5. Glenn slept off and on during that time. He let me sleep and fixed his own lunch. He is just wiped out and wishes he would stop being so tired. All he has energy to do is go to the dining room and eat, then come back to the room and rest. His leg edema has continually gotten worse. I realized this evening that the discharge instructions didn't say for him to be taking lasix, although the Dr. had said he would have him doing that. So he got some lasix tonight which should help the swelling, and maybe the exhaustion since I figure his heart has been working hard to deal with so much fluid.
I've put him to bed and I'm going to the dining room to have some coffee, (since we are not allowed to have any food or drinks other than water in our rooms,) and play some solitaire and visit with anybody else who is up.

Finally able to get some rest

Glenn's appointment at the clinic this morning was pretty uneventful. His labs are improving, and he didn't need any more platelets or blood. And since it was a holiday weekend, it was pretty unbusy so we got in and got out in a couple hours. The rest of the day was spent with visitors. Two girlfriends from home came and took me to lunch. It was nice to get to see them again. And our daughter came this afternoon and hung out with us most of the day. We enjoyed so much getting to be with her again. We're starting to miss our home and getting a little anxious to get back there again. Glenn has done well today. He had to do some walking when we went to the clinic today. And he ate and drank more. But most of the time he is pretty wiped out. His body is very busy making new blood cells and it just takes a lot out of him.
I heard a rumor that some people might think we had to sleep in our car. Not a shred of truth to that. We have had a bed every night either at the hospital or at Hope Lodge. So be at peace. And thank you for your concern. The next few days we will  be able to just chill out and relax until Tuesday when he has his next clinic appointment. We so need that rest. We'll just be eating and sleeping and hanging out with our Hope Lodge family. :-)

Some nights and days are longer than others

It was a busy night last night. Glenn got two more units of blood. We were awake a lot of the night; our nurse was the first person at the hospital that we didn't feel comfortable with his competence. He is the only exception to our very satisfying experience at Shands, G'ville, as I'm sure you are probably tired of hearing about by now! I  talked to the "Gentle Giant" nurse about how we were feeling and he came in and checked things out. Luckily Glenn was still alive and well by the end of that shift. I was more than a little concerned. This morning the P.A. came and said that the plan was to discharge Glenn today. By that time, we were not feeling like Glenn was ready to leave. He was still to get two more bags of platelets and something else that I can't even remember now what it was. He was feeling nauseated and not well and had a low grade temp. which they don't consider a real temp. As the morning went on, he got meds for his nausea and started feeling better, so I felt better about us leaving. The next hurdle was to find out if the Hope Lodge had a room available for us, or if we needed to figure out some other arrangements. I called there, and the lady I spoke to said they wouldn't have an opening until possibly Monday or Tuesday. So I just started packing us up while Glenn got his platelets. Later, I called another lady at the H.L. and asked her what the situation was. She said she couldn't give me an answer until we were officially discharged and to call as soon as that happened. The rooms are give on a first-come, first-served basis. I got the impression that she was rooting for us to get there first before anyone else who might be being discharged as well. Anyway, to make a long story not so long, we got the room there. Praise God! So we are back and settled in and glad to be here. We don't know how long we will be here before Glenn is discharged to go home, but from what the Dr. said, we may be home by next weekend. So, Mah Jongg ladies, get your cleaning rags ready to go over to the condo and do your thing! You guys are WONDERFUL!!!!!
I've had a couple people ask me if they can donate blood for Glenn. I have asked about that and the answer is that we have to call the blood bank directly for that answer. I tried to call here and the number that was listed connected me to their fax line. So if you want to call the blood bank there they can hopefully give you a definite answer. That's the best I can do for now. Thank you so much for being willing to give your blood.
There is so much more I could share with you all, but, for one thing, it really might bore you, and for another thing, I am exhausted from last night's ordeal and we have to get up early to go to the clinic. So, yep, you guessed it. I'm going to retire for the night.

Still here

Well, the Dr. came in this morning and said he wasn't discharging Glenn today because he wanted to fine-tune his edema/electrolytes, and follow up with the blood in the urine. So we're still here. We'll see what happens tomorrow. I think Glenn was relieved that he wasn't getting out today, although he had a better day today. He was awake and out of bed most of the day and ate a little better than he has been. He got some more platelets, some more fluids and some other stuff for the electrolytes. Edema doesn't look any better, actually worse. Puzzling to me. As far as the treatment results, he's progressing as expected, but I jumped the gun when I said his kidney function had improved. It went back to where it was, (stage four), but the Dr. said we wouldn't see any improvement for a few months. His blood pressure seems to be more controlled now, though.
Sorry, I don't have any funny stories, or inspiring insights. Apparently I've gotten the "ICU" dull brain syndrome from our being here for almost three weeks now. I probably need to get out for a while but I sure don't want to leave and miss anything the Dr. has to say or any other development. So after sitting here and spacing out for who knows how long, I'll end this here. Till tomorrow night.

Nearing the end of this chapter of the adventure

A much more alert day today for Glenn. He was awake most of the day and not as nauseated :-) He ate more today, too. The Dr. says he will probably be discharged from the hospital tomorrow, (Thursday). We may not have a place to stay and might ask to stay one more night and hopefully get a room at the Hope Lodge. They can never tell us if there will be a room available until that day, but we heard a rumor that they might have a discharge Friday and that might be available for us.

Another concern we have is that Glenn had blood in his urine for the past couple days. It is being tested tonight and we should have some idea of what is causing it, or if it is an infection, pretty soon. We are a little uneasy about him being discharged tomorrow because he is not consistently feeling better. He is good for a while and then not good. So there's your prayer assignment for today.

We are missing our kids a lot and hoping to see our daughter this weekend. Our "soldier" son is coming home from Cali. for a visit in a week and we are looking forward to seeing him. He will be getting out of the Army in a month or so. We are so proud of all three of them and they have been a great support to us during this time. It's sweet to see how they are concerned for their dad. We are so blessed to have each one of them. They are each very talented in their own ways, it amazes us that they each came from us and yet each one is so different from the other. Sorry, I got off the subject of Glenn, which this blog is about. But you parents know that we have to go on about our kids sometimes.

Time to wear the pink hat

I would like to know what button I'm pushing that erases my entry when I am half way through it!!! Starting over again.
Glenn started the morning feeling pretty good, but by the end of the morning he was out of steam. His count went up again this morning, which is the trend that the Dr. is looking for. He told Glenn this morning that he will probably be discharged by the end of the week. Of course, we will have to stay in town for a couple weeks for daily follow-up treatment. Our friend was discharged from the hospital today, so we can't be far behind.
Well, guess what Glenn did this morning? He decided to get his head shaved, because it was shedding so badly. So he is officially bald. He now gets to wear his hat that his hair cutter gave him: it's pink and says "I'm too sexy for my hair." He's been looking forward to getting to wear that. I'm still going to get pictures on the blog, when I figure it out. Really, I am.
Quote of the day came from our nurse today. Glenn was telling her that the Dr.s wanted to be sure we understood that what he has is not cancer, but the treatment is the same treatment as multiple myeloma, (which is a cancer and a "cousin" to Glenn's disease). The nurse said, "So I guess what they're saying is, 'You're not an idiot but we're going to treat you like one.'" Hahahaha. Well, we thought it was funny, anyway.

Start of week 3

Glenn has been very quiet today, hardly saying anything and resting in bed the whole day. We did have a visitor this morning for a little while, who came bearing more gifts from several more people from our church family. God continues to humble and amaze us with his love through his people.
Glenn got  platelets last night and two bags of blood today. His count came up today from zero to a positive number, yeah!!! That's a good thing, as long as it continues to go up, and the Dr. and nurses seem to think that will happen. Our friend is being discharged from the hospital tomorrow to stay here in town for a couple weeks. Our Dr. says Glenn will probably be able to be discharged near the end of the week. Someone asked me if Glenn is anxious to get out of here. He really hasn't complained about being here, probably because he's been sick enough to appreciate being in here. It's kind of a security to be here with the health care professionals keeping tabs on him constantly. I, personally, am not ready for him to be discharged for that very reason. We can  get a picture every day of what's going on in his body by his labs. Not ready to leave that security yet.

Still waiting for the numbers to come up

We had another busy day with visitors. Only two couples, but it seemed like a lot to us. These people are just amazing us all the time. We received a generous gift from our life group, dinner, spending money for my meals, and a dessert; then a home cooked meal. We are getting so spoiled, but really blessed. How do you say thank you  as deeply as we feel it? There are no words.                                                                                                                                        Glenn didn't need any platelets or blood last night. We'll see what the lab numbers say tonight. Today he did get several medications to reduce his puffiness/water retention, (albumin, lasix, and potassium). It did what it was supposed to, but from what I can see, he'll need more tomorrow. Oh, and when I pulled on his hair today some came out so he'll be bald soon.
Our friend, who is on the same treatment plan as Glenn, thinks he may be getting discharged tomorrow or Tuesday--but will be staying at the Hope Lodge for a couple weeks for daily follow up and treatment.  So we may be following him soon after that. The determining factor is one of the counts that they are watching so the guys will be safe enough to leave the unit. So far Glenn's has stayed at zero, and it needs to be at least 1500. He has started getting double doses of the shot that is supposed to speed that process along, (Nupogen for all you medical people.)
We have now been here in the hospital for two full weeks. The first week seemed to fly; this past week seems like it began so long ago. We still have about three weeks before we can sleep in our own bed and use our own bathroom. So we're not half way through this process yet. I used to wonder why patients wanted to go home from the hospital when they got to lay around all day, have their meals cooked and brought to them, and be fussed over by Dr.s and nurses. I'm getting it now. It's just not the same as home.