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.