Thursday, September 29, 2011

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.......

Monday, September 26, 2011

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.

Thursday, September 22, 2011

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.

Wednesday, September 21, 2011

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. 

Tuesday, September 20, 2011

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......

Monday, September 19, 2011

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.

Thursday, September 15, 2011

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!

Tuesday, September 13, 2011

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.

Monday, September 12, 2011

.......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.

Tuesday, September 6, 2011

"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.

Thursday, September 1, 2011

:-( 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......)