Friday's Appointmetn

We went to get his second treatment of his two weeks on two weeks off treatment. I had actually suggested to ted that maybe we should skip this treatment or at least the cpt 11. I left it too him to decided and would back him up either way. So we got there and Ted said he wasn't going to do the Cpt11. Let me explain why. He usually has treatment on Friday and snaps out of his blah on Tuesday or so. Well it was friday and he was just blah still. Sleeping alot and not having alot of energy. So of course his counts didn't improve any from his last transfusion. The chemo he had last week must have sucked up all that fresh blood. So tuesday we have to go and get another CBC (blood test) and see what they are. If they have not gone up or just stayed the same they will probably schedule him for another transfusion. That would be two transfusions in 3 weeks. 4pts of blood. The chemo just keeps running him down. He has terrible chemo brain and I think it affects his hearing. LOL. Really i'm serious. But I think I forgot to tell you all maybe I did. His counts did go down with this treatment and that probably means that the tumor isn't growing much. The CEA levels measure a protein given off by the cancer cells. So the less they give off the less the number. But CEA levels are not an accuarate measure of the cancer. It's only a guideline. So we really never know. Well all the Dad's have a great Fathers Day out there! I think we are just hanging home and working on cleaning up the house. With me working it definatly takes a toll on the house. Love to all. Karen

Hospice

Ok so I've put off writing about this because, at first I think it was difficult to talk about. But I want to make it clear to everyone that Ted is not dieing today or tomorrow. This all came about because we went to our primary physician and she wanted to know if we have looked into hospice. We said no we haven't and no one has mentioned to us before. I didn't think Ted was ready for it but she said lets just look into it and you can always say no. So she set us up with Hospice. At firt they weren't sure if he qualified because he is still taking chemo. I said I did not need home care because we do everything ourselves. So in the end, after they realized he only takes the chemo for comfort measures. Because it helps with the pain. They agreed it would be good. I guess you no longer have to have a life expectancy of 6 months to be on Hospice. And if you come off of Hospice, you can go back on when your ready.

So what is Hospice going to do for us. Well first they recognized the fact that we fall through the cracks. What I mean by that is that Ted makes too much money on Disability to qualify for food stamps and medicaid. But not enough money to pay for all his perscriptions and bills. (One of the main reasons we started Team Ted) Anyway we have a social worker and she is really nice. Someone who you can sit and bullshit with. We also have a nurse who is nice and she will probably stop by once a week or every other week till we need her more. They are full of the answers that we need and crave. Answers that Doctors are afraid to tell us about. Hospice has also done something that I never thought could happen. They are trying to negotiate with the insurance company to lump all his bills together so that they get covered and we don't have to pay anything out of pocket. The Jury is out on that still so we will see. BUT the best news about being on Hospice is that they are going to pay for our co-insurance for perscriptions. We have crappy insurance on perscriptions and we pay 40%. So now they are going to pick up the tab on that 40%. We pay about $25 for a wheelchair a month because our insurance won't buy it they will only rent it. They are sending one over from the company that they use. So Hospice is saving us about $400-500 a month. Wow. We are so surprised on how this all works. So I guess that Hospice isn't as scary as it sounds. It doesn't mean Ted is not doing well. He actually is doing ok.

We saw a lymphadema specialist they other day and they are going to start massage and hopefully this will help his legs. He is still messing around in the garage and building furniture and loving every minute of it. So right now things are ok. I'm working and it's been a little tough but we are managing. The kids are almost out of school. We are looking forward to summer.

Well I hope everyone else is doing well too. Love to all. Karen

Another Transfusion

Things have been good. Ted has been busy, with making some adirondack furniture and other things to keep him sharp and busy. This past week has been not so good. About Wednesday he started feeling real tired. Taking extra naps, I thought it was from all the work he is doing. Well Friday we went to the doctor to have blood work done, we see the doctor next week. They called Friday night and said his blood counts are low again. 7.2 is what I think they said. So off to get another transfusion today. 2 more pints. ya know if they stop taking the damn blood then maybe they wouldn't need to replace it. In any case it was a long day and he is doing good. Just still really tired. Resting now and probably will get up later for a snack and then back to bed. I hope he starts to perk up more soon. He is suppose to get chemo on Friday this week. We will have to see what the numbers and counts are. I'll update you all when I know more.