update

Well the blood transfusion went well. Ted seems to have more energy but not nearly as much as he probably should. We will get blood work next week. And then we see the doctor on the 9th. We skipped our treatment on friday. It was suppose to be the avastin but teds incision seems to be getting infected again so we started antibiotics again and had to put off getting the avastin. Avastin is the drug that prevents you from healing. Because it prevents cancer cells from making a new blood supply but it also hinders wounds too. In any case things are quiet on the home front for now.

Family news......Sam and Kyle both made Honor Roll. Kyle, this is his third straight marking period. And Samantha brought up her grades from last semester and is doing much better. I'm so proud of them and how well they are doing with so much crazyness in our family right now.

Exhausted

Today was a long day. More for Ted than me of course. Went to Urologist at 10:30 follow up appointment good. Things are healing nicely now. Stopped at WaWa for Milkshake and Salads. Oncologist at 11:45. Blood work came back a little off. H/H was 8.6 and 22.9. So our nurse persisted with we should really get a transfusion. Ted didn't want too but he finally said ok. So after a few hours at the oncologist about 2:50 went to the hospital for blood cross type match. You think they would have this on file but they insist on getting fresh blood. If they would stop taking it maybe he wouldn't need more! By the time we got registered and then they took him for blood it was just about 5pm. Two hours of waiting for blood. One technition. Ohh well, So monday morning at 7:45 we head back to the hospital and get the transfusion. Then they have to be done by 12 noon. They are doing two bags and they are two hours each. Gonna cut it close. But then we have to go to Hampton (40minutes away) to got to the pain managment doc for his pump refill. So again a whole day movin and grooving.

But on the bright side we have family coming in. Teds sister and husband and some friends are coming tomorrow. Always look forward to having family here. Helps me alot. And my Sons Ring Dance (=Junior Prom) is Saturday. Can't wait to see him all dress in his tux. So it's gonna be a good weekend. Was 85 degrees today and it sucked because we were inside all day. Tomorrow is suppose to be another good day with Rain coming in on Sunday. Ohh well we can't win them all. Would like to win the lottery though! hahhaha, i've been told we are too young!

PS...GO REDSOX!

ER visit

Ok..so spent the evening in the ER. Why when you go to the ER does it take a minimum of 4-6 hours?? Now we get there waited about 10 minutes, then get to the triage nurse. Because he had treatment on Friday they did get us a bed quickly. So the nurse got the IV set up and said that the doctor will be with us soon. There was only two charts in front of us. Well an hour later of moaning in pain. The Doctor strolled in.....and was like, "What can I do for you?" Well Duh! What do you think you can do for us!! Dip Shit! I don't understand ER Doctors, they just don't seem to have a clue. But I will have to say he at least gave ted the drugs that he needed. It took 2mg of Deliuded, a volum and then and hour later 1mg of deluadid and some torridal. That seem to settle him down and by then he was hungry so we had to stop at IHOP at midnight for pancakes. So we are off to see the Pain mangement doctor for an adjustment in in his pain pump. For those of you who don't know Ted has an intrathecal pain pump. It pumps deluadid and another drug into his spine. This has been the wonder tool for ted. But this pain he had yesterday came out of no where and we just couldn't get a handle on it. I didn't want him to overdose or get sick.

Well we saw the pulminologist earlier in the day and he said that they couldn't find any asthma, sleep apnea, or anthing of major issue. The only thing that came back bad was, that there is possible scarring in the lungs from the chemo, or coughing. This is what might be causing the sometimes low oxygen levels. They are going to do a Ct scan of his lungs with very small slices of the lungs instead of the normal ct where they do larger chuncks. There is nothing he can do for it. But doing the CT scan gives him a baseline and if it gets worse he can talk with the oncologist about stoping chemo. That might be more of a difficult decision. I know things are going to get more complicated as time goes on.

Thank you everyone for all your support and kind words.

Karen

With Cancer comes decsions and redecsions.

Well I'll start off with the good news. We had the follow-up with the Urologist. And there is no cancer in the testicle. He put ted on Levaquin a pretty strong antibiotic. After 5 days on things are starting to look a little better. Doesn't seem to be so infected or painful.

Thursday Ted had a CT Scan of his brain, and we got the results on Friday and everything looked good. No tumors or spots. This is good. We can deal with this kind of news. Especially after finding out it is in the bladder we weren't sure where else it is. They have told us in the past that the first place colon cancer goes is the liver. But because he has so many ureter problems and the tumor is sitting on top of his bladder and engulfing the ureters and tailbone, I guess the next logical place would be the bladder.

In any case, in our meeting with the oncologist, we made a new decision to start chemo again. Now I know what your thinking, make up your mind. But how can you make up your mind when you know that the Cpt11 is bringing your numbers lower. Actually went down to 24 from 58. And now they are back up to 66. So we came up with a new plan. Now remember Ted is unconventional and so his doctor works with us and comes up with unconventional treatment. Instead of doing the cpt11 full dose every other week, we are going to do a half dose once a week for two weeks and then two weeks off. 2 weeks on 2 weeks off. We are adding in the 5FU, which isn't as horrible as the cpt11, it is much milder. He will eventually add in the avastin after he heals up from his surgery. Avastin can prevent healing, so we don't want to stop that. He is already at a high risk for infection.

So besides the numbers (tumor marker) going up so rapidly, another reason we decided to do the chemo is because if we don't he will progress down hill much more rapidly than if was on chemo. As it was since his last dose of chemo at the end of January. Ted was in the emergency room twice, once for swelling and another time for breathing issues. He has had continuous edema in his legs and ankles. His lymph nodes under his arms and in the groin are swollen and the pain in his tailbone is increasing. It has seemed in the past that the chemo seems to help with the pain and it also seems to settle the lymph nodes down some so that the swelling also subsides. No one can say for sure that the chemo helps that but the pattern fits. But there is so many variables that who really knows. It is all a guessing game.

So as of today ted seems to be doing ok on the chemo. A little slow and it seems to be messing with his head a little but hopefully he will pop out of it soon. If not we will go and get some fluids and nausea meds. Sometimes that helps.

Well I think that covers the update and everything that has been going on. We see the pulmonologist tomorrow to get the test results back from all the breathing issues he has been having. The breathing issues seem to be a little better so it will be interesting to see what he has to say about it all. I'll keep you posted.

Updates

Just to let everyone know Ted is doing well still after his sugery. The swelling is finally going down. He was very stubborn with the ice. He just wanted to keep working and act like he never had surgery. In any case we almost ended up going to the ER cause we thought he might of had an infection but increased his antibiotic to twice a day. (He takes a regular dose of it for his kidney drain. )And got him to use an ice pack. So far so good. He has a Head CT on Thursday and we see the oncologist on Friday. So hopefully we will have the results. We might try 5fu a much lower dose of chemo but who knows what ted will want to do. It's his choice, even if he changes it a hundred times. Love to all. Karen

PS...thanks for all the thoughts and prayers. They are definatly welcomed and appreciated.