Sunday, September 30, 2012

Enjoying relative "normal-ness" for a time.

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

Monday, September 17, 2012

Night-time dialysis

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

Sunday, September 2, 2012

Report of Dr visits.

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