Wednesday, April 27, 2011

.....and a third day of harvesting.

Yep, we're here yet again for a third day of harvesting. And we may have to do it again tomorrow. Not what we were planning. Oh, that's right, we can't plan anymore.One good thing about the harvesting is that it keeps Glenn's blood pressure down in a normal range, and he has had to cut back on his  bp meds. He was right on the border of having to get blood, but his count went up 0.1 point. So it has been held off for now. Apparently this process causes blood counts to go down, and his was already low to start with. Hopefully it will stay where it is so he won't need to get one tomorrow. Someone from Jax asked Glenn what his stem cells look like and he said it looks like tomato soup in a bag. And it does! I don't know if I can ever eat tomato soup again. Tomorrow he has an appointment with the pulmonologist. Then we MIGHT get to go home for the weekend.
Glenn has been giving out his book, signed of course, and everybody thinks they know a famous person. One person insisted on paying for a book. She was prepared to pay full price but since she wouldn't take no for an answer, we let her pay a very discounted price. It's pretty quiet here in this room because we are the only ones having anything done. Our new friends got to go home today because his harvesting was finished. We will meet up again next week when both he and Glenn are admitted to the hospital. It has been very helpful to have another couple to compare notes with about our experiences.
Did I mention that yesterday when we were down in the cafeteria I ran into a friend from long ago from our previous church, who we thought still lived in Boston? She lives and works here in G'ville now. It was sooo good to see her again and to know we can meet up more often.
We will be very glad to get back home and sleep together, and in our own comfortable bed for a few nights.(The suites at the Lodge only have twin beds.)
Ok, the machine went off so we can go pretty soon.  Tomorrow is a new day.

Tuesday, April 26, 2011

Another day, another bag of stem cells

We are here for another day of stem cell collection, or harvesting. The way they do it is, for several days before they began collecting, Glenn got a shot twice a day to cause the stem cells in the bone marrow to mature and enter the blood stream so they could be harvested. Harvesting is done by a process similar to dialysis with the blood being drawn into a machine that spins it to separate the different kinds of blood and the stem cells are then collected into a separate bag, and the rest of the blood is returned to him. We are probably going to have to have a third day, tomorrow, of harvesting. :-( We were hoping we could come home for a day before we have to go to the appointment we have Thursday. So we are reminded that we have to take things one day at a time, and that we are living a different life now. We feel kind of out of place here because most of the people here are much sicker than Glenn, or at least farther along in their illness. It is a cancer hospital and Hope Lodge, where we are staying, is for cancer patients from out of town undergoing treatment daily. 
We miss everybody in Jax and so much appreciate all your prayers and good wishes, as well as those of all you who are farther away from us.We look forward to  getting to see everybody in the future and someday getting back to our life in Riverwood. But, alas, that won't be for quite a while. Until then, keep those prayers and good wishes coming in! They do more for us than you can imagine.  

Monday, April 25, 2011

(I don't know what to title this)

We are sitting in the "aphoresis" room where Glenn is having the first day of stem cell harvesting. Seeing him hooked up to the machine makes it more real that he is truely sick, even though he doesn't act like it, or feel particularly badly. Our "next door neighbors" who are also from Jax are also having the same thing done. (She cried when her husband got hooked up to the machine.) This process will take about 4-5 hours each day. We will know tomorrow how many days the harvesting will take.
We did get to go to church yesterday, though we had to be late because Glenn is getting a shot twice a day until the harvesting is done and we had to be at the hospital for that at the same time church started. It was good to see old, old friends. They had a brunch after church so we got to talk to several people from long ago. And after we took a nap, we were treated to a real Southern Easter dinner. Some of the residents at Hope Lodge fixed ham, greens, green beans, black-eyed peas, macaroni &cheese, potato salad, dressing with gravy, dump cake, carrot cake, cookies, ice cream, flan, and of course sweet tea, (what's a Southern meal without sweet tea?). Seconds were as good as the first round!
Glenn is feeling pretty good, although he is noticing a few aches and pains associated with the shots he's getting as well as effects of the kidney damage. It really is a new and different world we have entered, in this new phase of our life. We live with uncertainty rather than our former life as we knew it, knowing what to expect from day to day. And we continue to be so thankful for the concern from each person who has expressed it to us, with the list growing all the time. It's almost overwhelming and undeserving, at least that's how we feel. We love and appreciate each one of you.

Friday, April 22, 2011

Have we only been here one day?

It seems like we've been here for several days. Has it only been one day? Amazing!
Glenn is doing very well after his central line was put in today. And guess what: he said it isn't that bad having it in! Well, hello, that's what everybody tried to tell him. He told the Dr. today that so far no one has lived up to his expectations, meaning that nothing has been as bad as he expected.
By the way, I have to clear up something that Glenn pointed out to me in my blog last night. I can assure you all that there is NO wild life either here at Hope Lodge where we are staying, nor at Riverwood where we live! Apparently wildlife is one word! If you read last nights blog maybe you get what he got from it, and with quite a bit of laughter, I might add!
Besides getting the central line put in, Glenn has gotten two more shots of Nupogen, and without any side affects so far. Hopefully he will still feel ok Sunday so we can go to church here. Our "next door" neighbors may go with us. We have really bonded with them in the short time we've been here, (really, has it only been ONE day?) Glenn said it is really encouraging to see what people are praying for specifically and that the prayers are being answered with a positive response. Thank you all sooooo much!

Thursday, April 21, 2011

The ball is now rolling.

We are in G'ville now and Glenn got his first shot of  Nupogen today. That is the stuff he will get twice a day until   the stem cell harvest is done next week sometime. The harvest itself doesn't start until Monday.
We were able to stay at the Hope Lodge, thank you God! The Hope Lodge is a place like the Ronald McDonald House, started by Winn-Dixie, for cancer patients and care givers to stay in while receiving daily out patient treatment. It is free to stay here and everyone here has much in common so it is a little close community. People stay here for as long as  100 days. We have already met many people here. Our "next door" neighbors are also from Jacksonville, he is receiving the same treatment as Glenn. We found we have a lot in common, including being on the same schedule of treatment while we are here. We will be seeing them again when we come back in for our hospital stay. The "Rock Church" brought and served dinner to all of us tonight. Yum, good church food! Of course there were some good desserts!
Tomorrow Glenn will get his daily two shots of Nupogen, and the dreaded central line will be placed. So he will get some of that good drug that he got when he had his bone marrow biopsy. You can pray that he will be at ease while he has that central line in for several weeks until this is all over and we go back home.
Some of you know how much I love the wild life where we live and I thought I would miss it all. But.... our room overlooks a pond that has turtles and gators in it! So I will get to see wild life even while we are here. I just think God is so sweet to do that for me! When I figure out how to get pictures on this blog, I'll show you the pond, as well as some other notable sites.

Monday, April 18, 2011

Consents signed and ready to go.

We are home after a day in G'ville. We had to meet with the Dr. to sign consents for treatment and to take  part in different studies. I told the Dr. it was like closing on a house, there were so many things to sign. He said that's what everybody says. Since Glenn is only the 5th patient he has treated with Light Chain Deposition Disease, he will probably be used in a study. Our Dr. is the one who would do the study.
I told you all that there were two things we went to do today. The other thing was a repeat scan on Glenn's lungs. Our coordinator told us he needed to have the repeat scan because there was a nodule that showed up on the first scan. Today's scan reading said it was nothing to worry about. So we can go ahead with the treatment plan. Thank you God!
So now we will go back Thursday to begin the "growth hormone" shots, the central line placement on Friday, and the stem cell harvesting on Monday and for however many more days it takes to get as much as is needed for the transplant. No, Glenn is not going to grow taller from the shots. They are to get the stem cells to do what they are supposed to in the bone marrow and then get into the blood stream for harvesting. One thing you can pray about for us is that the Hope Lodge will have room for us to stay while we are there this week. We were told to call Wednesday to find out if we can stay there. Thanks everyone.

Saturday, April 16, 2011

A little change of plans.

Our coordinator called this past week to tell us that our Dr., with whom we are scheduled to meet on Thursday, will have to be gone at that time, so she has rescheduled that appointment for this Monday. We actually have two appointments on Monday, but I'll explain the other one at a later date. So we will be spending Monday in G'ville, come back home that day and go back Thursday to start pretreatment treatment. Glenn will be receiving shots twice a day starting Thursday to get the stem cells to go into the blood so they can be harvested. The following day, Friday, they will "install" the dreaded central line in his chest, that will remain until he is discharged home sometime in June. This is one of the two things about all this that are bothering him the most because he is terrified of needles. It gives him the creeps to think of having that in him for so many weeks. So if you want to know what to pray about for him, there's your answer. He will get the shots twice a day, starting 4 days before the harvesting, and throughout the period of harvesting. That starts on the following Monday and we don't know how long it will take. Each day of harvesting he will be hooked up to a machine similar to a dialysis machine for 4-6 hours a day, we think for at least two days. It just depends on how many cells they get the first two days. It takes different lengths of time for each person. So we will be gone from this Thursday until sometime the following week. We'll miss all of you at our church that Sunday. We hope to  worship at the church we went to when we met (over 3 decades ago) on that Sunday, depending on how the shots affect him.
I  don't know how many people are following this so I don't know if I should keep up with it. I will if there are at least a few people following. I know of 2 so far.
Glenn is still feeling fine right now, although his blood pressure went down to normal and he was feeling funny, he couldn't explain it. But when I took his bp tonight it was up a little and he was feeling better. Go figure. I guess he just doesn't feel right being normal. Of course, Glenn wouldn't be Glenn if he was normal, would he?!

Friday, April 8, 2011

Glenn's new role as patient

Hi everybody. I decided to use this medium to keep everyone who is interested in Glenn's health situation informed. Seems like the most efficient way to keep you all informed.
A year and a half ago, Glenn had his regular physical exam and routine tests showed too much protein in his urine. He was referred to a nephrologist who did tests to find out what was going on and to rule out polycyctic kidney disease, which his dad had, and his sister, Adrianne is dealing with now. That was ruled out but there were some results that needed further investigation. That Dr. didn't seem to be concerned enough to keep testing so we went to Adrianne's nephrology group. After many tests, including two kidney biopsies and a bone marrow biopsy, referral to a hematolgy oncologist, (blood cancer Dr.), and a year later, we finally got a diagnosis: Light Chain Deposition Disease. You've never heard of it??? Well, we were totally in the dark, and his nephrologist has never had a patient with this disease. So don't feel alone, that makes all of us! Basically, part of a plasma protein breaks off, clones itself many times, and damages different organs. His damage is in his kidneys, and he is in stage 3 renal failure, (actually, I think with he last labs he had done, it looks like he is in stage 4 now, Stage 5 is when a person is started on dialysis.)
He was referred to Shands in Gainesville, FL, where a plan of treatment was made: chemotherapy and stem cell transplant, to begin relatively soon. This past week we went to G'ville for three days of evauation to be sure he is healthy enough to under go the treatment. In two weeks we go back for several days of preliminary treatment. A week later, we will go back, be admitted and receive the chemo then the stem cell transplant. Because the chemo wipes out all his immunities and his blood count goes down to almost nothing, he will stay in the hospital for 3 weeks, receiving blood products as needed, and basically stays in isolation. After that we will remain in G'ville for about 2 more weeks for daily outpatient treatment. When we are sent home, he will have to stay away from people for several months, wearing a mask whenever he goes out, to prevent infections.
So that's where we are now. He feels fine, aside from a little fatigue and leg swelling and his blood pressure remains difficult to control because of the kidney damage.
I probably won't be posting much for the next two weeks until we start the next step in the process. So many people have been such an encouragement to us in every way and reassuring us of all their prayers going up for us. We have encouragement that this treatment  hopefully give him more years with us than we originally thought. We feel so blessed to have as many people as we do who have expressed love and concern.  Thank you all so much.   Eda