Question:
Lori, I’m at a loss for words (still). I wanted to reply to your earlier post but couldn’t come up with anything meaningful. My prayers are with you and Curt. Larry
– Hide quoted text — Show quoted text – We had the usual Zometa on Tuesday. Curt’s favorite IV nurse moved to a different site and he had this old lady from 1 time before. Again she had to poke him 3 times in 2 different spots and still had to wiggle that needle around. I had asked at the front desk about reading his chart. We had discussed that the evening before. Eventually, OL got the IV in and set it for 18 min. we just kept hoping the vein didn’t blow!. A Onoc. nurse came in and asked Curt how he was feeling "fatiqued, bone pain" where? "It is in a different place all the time. Last night, in my feet" have you had any recent bone scans? "no" (I had asked but Dr. pooh-poohed me) "can we read his chart now?" yes. I read the progress notes (which is what I was looking for. I wanted to see his dictations after our appts. There is where it is all laid out to read) I read the Bone scan results. total spine, ribs, long bones of the body, fingers and I just found out Base of the skull, right hemisphere!!! I didn’t know that. Now I have to research if that can spread to the brain easier by infecting the bone around the brain. That blood-brain barrier is so close. I ‘ll let you all know when we get those answers. — Lori Devoted wife of Curtis, Stage 4 Prostate cancer at age 40 PSA 865 Dec 30,2003 44 Feb 23,2004 17.3 Mar 15,2004 18.9 Apr 16, 2004 17.3 may 15,2004 14.59 =))) July 10, 2004 mets to bone and lymph Lupron Q3months Casodex 50 mg daily Zometa qmonth http://community.webshots.com/user/lorismiller From the 2nd visit on- out of 12- we definitely were in different rooms during those 8 min every 3 months. He charted how he spent one appt. talking remember hearing was "we’ll keep you alive as long as we can" He said in the 4th month that Curt finally was teary-eyed during the appointment so it must finally have sunk in. Curt has always said that he IS dealing with it, he’s not about to lay down and cry about it. He goes to work. The doctor’s office called Curt today to tell him that they want him to have some tests BEFORE the next appt with dr Londer Oct 5th. SO we are going in Sept 30 for some answers. CT, Bone scan. We will know if it is spreading, static, or receding. Also will have a psa.
Response:
Lorlei, I read your post with tears in my eyes, and a prayer in my heart. Why not throw him a surprise 4th when he gets backs? Why wait for next year. There is no telling what the progression will be. Peace, DanR
Response:
Lori, Advanced prostate cancer is not an area in which I have much knowledge. But from what you have said I believe Curt has to be very careful because he could break a bone which could cause a fall and the fall could cause more bones to break. I don’t think he can live his life in fear of breaking something because then he wouldn’t be doing much "living". But he and you need to be aware that it could happen while playing a round of golf or just walking from the kitchen to the den. I’d say just use common sense and he shouldn’t be carrying bags of groceries. I do wonder if he could get into one of the vaccine trials? Do they have him on anything to help rebuild lost bone?
He gets Zometa infusions every month to strengthen his bones. He did fall in the shower one morning but didn’t break anything. He has a helper who carries all his tools and I carry his golf bag when I am there. S13 helps with the groceries etc. Curt just told me this morning that he needs me to do all the things he can’t. I lost a wonderful friend to prostate cancer and I know his wife would probably be very willing to talk to you if you thought she could be of help. Of course she’s old enough to be your mom but she’s a super person. She probably knows more about this disease’s progression than anyone else I know.
Sorry to hear of your loss. It is amazing to me how many people tell me that their "FIL, SIL, Neighbor etc" has Prostate cancer. Fortunately, most of them are in the curable stages.. I don’t think any of us have any words to bring you comfort.
Just posting here gives me comfort. as long as I can vent here and seek support, I will be fine. – Hide quoted text — Show quoted text – So many times when you post I just wish I could wrap my arms around you and give you a shoulder to cry upon. Men don’t understand the support system women have over a cup of tea or coffee. Maybe we can’t change the world bu t somehow together we manage to cope. You have such strength within you but what mother doesn’t when she has little ones? Somehow I know you will manage for Curt, yourself, and your children. Being informed is the greatest asset and the best defense. For now keep living life as normally as possible. I’m sure that is part of the reason Curt is still working. Not that income isn’t important but it gives him a sense of purpose and provides a diversion from his situation.
I agree, his german father taught him the good work ethic he has. and the last month he hasn’t wanted to go to work and he says "you know that isn’t me" and "I feel 70 yrs old every time I get out of bed" Go throw yourselves one big anniversary party. Chances are you (and 90% of the couples in this world) aren’t going to make it to a 50th anniversary so pack a whole lot of quality into what you do have. Good food, good friends, and lots of fun is very important.
He will be elk hunting over this anniversary. I heard him on the phone with his buddy. He is taking out big 4wheeler with him. He told Larry (friend) that he knows he won’t be able to climb those mountains like he has in the past. I plan on throwing a big 5 yr party next year. thanks for listening. — Lori Devoted wife of Curtis, Stage 4 Prostate cancer at age 40 PSA 865 Dec 30,2003 44 Feb 23,2004 17.3 Mar 15,2004 18.9 Apr 16, 2004 17.3 may 15,2004 14.59 =))) July 10, 2004 Repeat CT and Bone scan coming Sept 30th!!!!! mets to bone and lymph Lupron Q3months Casodex 50 mg daily Zometa qmonth http://community.webshots.com/user/lorismiller
Response:
– Hide quoted text — Show quoted text – Lori, I’m at a loss for words (still). I wanted to reply to your earlier post but couldn’t come up with anything meaningful. My prayers are with you and Curt. Larry We had the usual Zometa on Tuesday. Curt’s favorite IV nurse moved to a different site and he had this old lady from 1 time before. Again she had to poke him 3 times in 2 different spots and still had to wiggle that needle around. I had asked at the front desk about reading his chart. We had discussed that the evening before. Eventually, OL got the IV in and set it for 18 min. we just kept hoping the vein didn’t blow!. A Onoc. nurse came in and asked Curt how he was feeling "fatiqued, bone pain" where? "It is in a different place all the time. Last night, in my feet" have you had any recent bone scans? "no" (I had asked but Dr. pooh-poohed me) "can we read his chart now?" yes. I read the progress notes (which is what I was looking for. I wanted to see his dictations after our appts. There is where it is all laid out to read) I read the Bone scan results. total spine, ribs, long bones of the body, fingers and I just found out Base of the skull, right hemisphere!!! I didn’t know that. Now I have to research if that can spread to the brain easier by infecting the bone around the brain. That blood-brain barrier is so close. I ‘ll let you all know when we get those answers. — Lori Devoted wife of Curtis, Stage 4 Prostate cancer at age 40 PSA 865 Dec 30,2003 44 Feb 23,2004 17.3 Mar 15,2004 18.9 Apr 16, 2004 17.3 may 15,2004 14.59 =))) July 10, 2004 mets to bone and lymph Lupron Q3months Casodex 50 mg daily Zometa qmonth http://community.webshots.com/user/lorismiller From the 2nd visit on- out of 12- we definitely were in different rooms during those 8 min every 3 months. He charted how he spent one appt. talking remember hearing was "we’ll keep you alive as long as we can" He said in the 4th month that Curt finally was teary-eyed during the appointment so it must finally have sunk in. Curt has always said that he IS dealing with it, he’s not about to lay down and cry about it. He goes to work. The doctor’s office called Curt today to tell him that they want him to have some tests BEFORE the next appt with dr Londer Oct 5th. SO we are going in Sept 30 for some answers. CT, Bone scan. We will know if it is spreading, static, or receding. Also will have a psa.
thank you, they did call us yesterday and have ordered a whole slew of tests. ct, bone scan. we will have more answers Oct 7th. Lori
Response:
Lori, Advanced prostate cancer is not an area in which I have much knowledge. But from what you have said I believe Curt has to be very careful because he could break a bone which could cause a fall and the fall could cause more bones to break. I don’t think he can live his life in fear of breaking something because then he wouldn’t be doing much "living". But he and you need to be aware that it could happen while playing a round of golf or just walking from the kitchen to the den. I’d say just use common sense and he shouldn’t be carrying bags of groceries. I do wonder if he could get into one of the vaccine trials? Do they have him on anything to help rebuild lost bone? I lost a wonderful friend to prostate cancer and I know his wife would probably be very willing to talk to you if you thought she could be of help. Of course she’s old enough to be your mom but she’s a super person. She probably knows more about this disease’s progression than anyone else I know. I don’t think any of us have any words to bring you comfort. Hope lies in possibilities such as vaccines if he could get into such a study. We are so close to a cure but it seems to be just slightly out of reach. But you know all that. So many times when you post I just wish I could wrap my arms around you and give you a shoulder to cry upon. Men don’t understand the support system women have over a cup of tea or coffee. Maybe we can’t change the world but somehow together we manage to cope. You have such strength within you but what mother doesn’t when she has little ones? Somehow I know you will manage for Curt, yourself, and your children. Being informed is the greatest asset and the best defense. For now keep living life as normally as possible. I’m sure that is part of the reason Curt is still working. Not that income isn’t important but it gives him a sense of purpose and provides a diversion from his situation. Go throw yourselves one big anniversary party. Chances are you (and 90% of the couples in this world) aren’t going to make it to a 50th anniversary so pack a whole lot of quality into what you do have. Good food, good friends, and lots of fun is very important. Bev
– Hide quoted text — Show quoted text – We had the usual Zometa on Tuesday. Curt’s favorite IV nurse moved to a different site and he had this old lady from 1 time before. Again she had to poke him 3 times in 2 different spots and still had to wiggle that needle around. I had asked at the front desk about reading his chart. We had discussed that the evening before. Eventually, OL got the IV in and set it for 18 min. we just kept hoping the vein didn’t blow!. A Onoc. nurse came in and asked Curt how he was feeling "fatiqued, bone pain" where? "It is in a different place all the time. Last night, in my feet" have you had any recent bone scans? "no" (I had asked but Dr. pooh-poohed me) "can we read his chart now?" yes. I read the progress notes (which is what I was looking for. I wanted to see his dictations after our appts. There is where it is all laid out to read) I read the Bone scan results. total spine, ribs, long bones of the body, fingers and I just found out Base of the skull, right hemisphere!!! I didn’t know that. Now I have to research if that can spread to the brain easier by infecting the bone around the brain. That blood-brain barrier is so close. I ‘ll let you all know when we get those answers. — Lori Devoted wife of Curtis, Stage 4 Prostate cancer at age 40 PSA 865 Dec 30,2003 44 Feb 23,2004 17.3 Mar 15,2004 18.9 Apr 16, 2004 17.3 may 15,2004 14.59 =))) July 10, 2004 mets to bone and lymph Lupron Q3months Casodex 50 mg daily Zometa qmonth http://community.webshots.com/user/lorismiller From the 2nd visit on- out of 12- we definitely were in different rooms during those 8 min every 3 months. He charted how he spent one appt. talking remember hearing was "we’ll keep you alive as long as we can" He said in the 4th month that Curt finally was teary-eyed during the appointment so it must finally have sunk in. Curt has always said that he IS dealing with it, he’s not about to lay down and cry about it. He goes to work. The doctor’s office called Curt today to tell him that they want him to have some tests BEFORE the next appt with dr Londer Oct 5th. SO we are going in Sept 30 for some answers. CT, Bone scan. We will know if it is spreading, static, or receding. Also will have a psa.
Response:
We had the usual Zometa on Tuesday. Curt’s favorite IV nurse moved to a different site and he had this old lady from 1 time before. Again she had to poke him 3 times in 2 different spots and still had to wiggle that needle around. I had asked at the front desk about reading his chart. We had discussed that the evening before. Eventually, OL got the IV in and set it for 18 min. we just kept hoping the vein didn’t blow!. A Onoc. nurse came in and asked Curt how he was feeling "fatiqued, bone pain" where? "It is in a different place all the time. Last night, in my feet" have you had any recent bone scans? "no" (I had asked but Dr. pooh-poohed me) "can we read his chart now?" yes. I read the progress notes (which is what I was looking for. I wanted to see his dictations after our appts. There is where it is all laid out to read) I read the Bone scan results. total spine, ribs, long bones of the body, fingers and I just found out Base of the skull, right hemisphere!!! I didn’t know that. Now I have to research if that can spread to the brain easier by infecting the bone around the brain. That blood-brain barrier is so close. I ‘ll let you all know when we get those answers. — Lori Devoted wife of Curtis, Stage 4 Prostate cancer at age 40 PSA 865 Dec 30,2003 44 Feb 23,2004 17.3 Mar 15,2004 18.9 Apr 16, 2004 17.3 may 15,2004 14.59 =))) July 10, 2004 mets to bone and lymph Lupron Q3months Casodex 50 mg daily Zometa qmonth http://community.webshots.com/user/lorismiller From the 2nd visit on- out of 12- we definitely were in different rooms during those 8 min every 3 months. He charted how he spent one appt. talking hearing was "we’ll keep you alive as long as we can" He said in the 4th month that Curt finally was teary-eyed during the appointment so it must finally have sunk in. Curt has always said that he IS dealing with it, he’s not about to lay down and cry about it. He goes to work. The doctor’s office called Curt today to tell him that they want him to have some tests BEFORE the next appt with dr Londer Oct 5th. SO we are going in Sept 30 for some answers. CT, Bone scan. We will know if it is spreading, static, or receding. Also will have a psa.