Saturday, October 29, 2011

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.

Monday, October 24, 2011

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.

Saturday, October 22, 2011

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.

Monday, October 17, 2011

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.

Tuesday, October 11, 2011

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!)

Saturday, October 8, 2011

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.

Monday, October 3, 2011

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.