April 4, 2010
We really enjoyed our visit with our RV friends.
Finally got action with the VA with a C & P Exam on December 10th. Four hours of being questioned and poked and twisted and measured. Had CT of neck & Spine = problems with arthritis, aneurysm and kidney stones plus 8 ex-rays of all my joints.
Completed a Renal Scan on January 6th that pretty much showed little change with my kidneys. Right kidney only 09 percent functioning.
Back to the VA on January 11th for an EMG which determined severe Peripheral Neuropathy in legs below he knee. Completed the following tests on dates indicated
01/12/2009 Barium Enema = Diverticulitis by VA
1/20/2010 MRI Lumbar Spine shows Spinal Stenosis
1/20/2010 KUB X-ray showed little of significance
1/20/2010 Bone Density Exam indicates minor bone density loss with ADT
1/26/2010 Pulmonary Study Byrd Hospital - COPD/Emphysema
1/27/2010 Agent Orange exam VA with Chest x-ray and Blood work which indicated possile glocose problems as I had 2 consecutive readings of 160 or higher.
2/04/2010 CT of Abdomen and hips for Kidney Stones
2/18/2010 Blood/Sugar test GTT Dr. Saikali, diagnosed as Diabetic and put on medication.
2/18/2010 Carotid Doppler Dr. Mathew indicates no problems.
Scheduled for Spinal surgery on April 29th at the LSU Medical Center in Shreveport, LA.
We really enjoyed our visit with our RV friends.
Finally got action with the VA with a C & P Exam on December 10th. Four hours of being questioned and poked and twisted and measured. Had CT of neck & Spine = problems with arthritis, aneurysm and kidney stones plus 8 ex-rays of all my joints.
Completed a Renal Scan on January 6th that pretty much showed little change with my kidneys. Right kidney only 09 percent functioning.
Back to the VA on January 11th for an EMG which determined severe Peripheral Neuropathy in legs below he knee. Completed the following tests on dates indicated
01/12/2009 Barium Enema = Diverticulitis by VA
1/20/2010 MRI Lumbar Spine shows Spinal Stenosis
1/20/2010 KUB X-ray showed little of significance
1/20/2010 Bone Density Exam indicates minor bone density loss with ADT
1/26/2010 Pulmonary Study Byrd Hospital - COPD/Emphysema
1/27/2010 Agent Orange exam VA with Chest x-ray and Blood work which indicated possile glocose problems as I had 2 consecutive readings of 160 or higher.
2/04/2010 CT of Abdomen and hips for Kidney Stones
2/18/2010 Blood/Sugar test GTT Dr. Saikali, diagnosed as Diabetic and put on medication.
2/18/2010 Carotid Doppler Dr. Mathew indicates no problems.
Scheduled for Spinal surgery on April 29th at the LSU Medical Center in Shreveport, LA.
October 7, 2009
Life continues to be hard but we shall perserveer. First, the blood workup showed no irregularities. We completed another rotation of training troops and really enjoyed it. Fortunately I have pain meds that help get through each day. Had my Lupron shot on the 29th and a PSA test that was another less than 0.1. Last week I had some back pain and my doctor suspected kidney stones and was right. Spent 2 days in the hospital but nothing could be done because my blood was to thin. They took me off Coumadin and yesterday I had the procdure to remove kidney stones and place a stint in my urethea. I had 6 stones with the largest being the size of an English Pea. Got more pills to add to my pharmacy. Initially had to urinate every 5 minutes or so but now about once an hour. Finally I know about using Depends but hope not for long. Have to drink lots of water which I don't like. Scheduled to have stint removed next Tuesday the 13th so we can leave for our Texas RV trip to meet our friends Mike and Jan who are fulltime RVers. We have reservations for 2 weeks near San Antonio (Comfort, TX).
Life continues to be hard but we shall perserveer. First, the blood workup showed no irregularities. We completed another rotation of training troops and really enjoyed it. Fortunately I have pain meds that help get through each day. Had my Lupron shot on the 29th and a PSA test that was another less than 0.1. Last week I had some back pain and my doctor suspected kidney stones and was right. Spent 2 days in the hospital but nothing could be done because my blood was to thin. They took me off Coumadin and yesterday I had the procdure to remove kidney stones and place a stint in my urethea. I had 6 stones with the largest being the size of an English Pea. Got more pills to add to my pharmacy. Initially had to urinate every 5 minutes or so but now about once an hour. Finally I know about using Depends but hope not for long. Have to drink lots of water which I don't like. Scheduled to have stint removed next Tuesday the 13th so we can leave for our Texas RV trip to meet our friends Mike and Jan who are fulltime RVers. We have reservations for 2 weeks near San Antonio (Comfort, TX).
August 25, 2009
I have consulted with a neurosurgeon in Austn, Texas who ruled out surgery for my back troubles. He referred me to have vascular tests on my legs which I had and it was determined that the circulation was not the cause of the weeakness in my legs. Consulted a Neurologist who did a nerve study and found neropathy in my legs. He questioned whether or not I have Diabetitis and ordered blood work. I have a return appointment on September 16th, after I have blood work done. He also gave me exercises for my back. I did go back to role playing for a short time and was able to survive the heat. I have been fortunant to have work group leaders who understand my situation.
I have consulted with a neurosurgeon in Austn, Texas who ruled out surgery for my back troubles. He referred me to have vascular tests on my legs which I had and it was determined that the circulation was not the cause of the weeakness in my legs. Consulted a Neurologist who did a nerve study and found neropathy in my legs. He questioned whether or not I have Diabetitis and ordered blood work. I have a return appointment on September 16th, after I have blood work done. He also gave me exercises for my back. I did go back to role playing for a short time and was able to survive the heat. I have been fortunant to have work group leaders who understand my situation.
July 2, 2009
Lastest PSA test July 2, 2009 less than .01. and had my quarterly Lupron Shot.
Lastest PSA test July 2, 2009 less than .01. and had my quarterly Lupron Shot.
April 9, 2009
Lastest PSA test April 9th less than .01. and had my quarterly Lupron Shot.
March 23 - April 4, 2009
Spent the night of 22 March in pain in my chest, ribs, stomach and back. Finally went to the hospital in Austin and was immediately checked for a heart attack. It was determined my Gall Bladder was broken. Test indicated it was completely shut down and was afftecting my Kidney and Liver. On the 25th they removed a Gangreneous Gall Bladder.
on March 25th they did a ERCP to clear the bile duct and opened the sphinter. Kidney and liver functions were out of tolerance and kept me in the hospital for 12 days.
Lastest PSA test April 9th less than .01. and had my quarterly Lupron Shot.
March 23 - April 4, 2009
Spent the night of 22 March in pain in my chest, ribs, stomach and back. Finally went to the hospital in Austin and was immediately checked for a heart attack. It was determined my Gall Bladder was broken. Test indicated it was completely shut down and was afftecting my Kidney and Liver. On the 25th they removed a Gangreneous Gall Bladder.
on March 25th they did a ERCP to clear the bile duct and opened the sphinter. Kidney and liver functions were out of tolerance and kept me in the hospital for 12 days.
February 27, 2009
Appointment was routine with a discussion of my history. Doctor was satisfied to continue my routine of Lupron and Casodex and quarterly appointments for shot and PSA. less than .01
Appointment was routine with a discussion of my history. Doctor was satisfied to continue my routine of Lupron and Casodex and quarterly appointments for shot and PSA. less than .01
February 26, 2009
Lastest PSA < .1. Have an appointment tomorrow with new Oncologist in Leesville.
Lastest PSA < .1. Have an appointment tomorrow with new Oncologist in Leesville.
December 30, 2008
We got the results today. Doctor said it was good with N0 bone metatasis indicated. I waited till today to get the results so that Christmas would be interrupted as little as possible. We have spent the holidays with the 4 girls and are currently in Buda at Laura's home. we did return to Lake Charles for Debbie's family Christmas (White Elephant) on the 27th. We took the 5 youngest grand kids from Austin with us. Our plans are to return home on the 5th of January and will be working at Fort Polk later in January. We know we have a rotation in Feburary but March looks open so we might take a little trip out west. We shall see. We hope you all have had a wonderful Christmas and wish each of you a very Happy New Year.
We got the results today. Doctor said it was good with N0 bone metatasis indicated. I waited till today to get the results so that Christmas would be interrupted as little as possible. We have spent the holidays with the 4 girls and are currently in Buda at Laura's home. we did return to Lake Charles for Debbie's family Christmas (White Elephant) on the 27th. We took the 5 youngest grand kids from Austin with us. Our plans are to return home on the 5th of January and will be working at Fort Polk later in January. We know we have a rotation in Feburary but March looks open so we might take a little trip out west. We shall see. We hope you all have had a wonderful Christmas and wish each of you a very Happy New Year.
December 19, 2008
I have been having back pain and difficulty with my legs (tired and weak & pain in lower back with prolonged walking or standing).XRays indicated Arthritis in my spine so Doc ordered an MRI 12/11/08 and the results are:
1. Congenitally short Pedicles with ligamentum flavum hypertrophy and facet arthropathy narrowing the spinal canal at multiple levels. I have all the systems of the spinal canal narrowing.
2. Findings suspicious for metastatic disease in the lower lumbar spine predominantly L5 and S1. Bone Scan would be of benefit.
A Bone Scan was completed today. Richard and Debbie
I have been having back pain and difficulty with my legs (tired and weak & pain in lower back with prolonged walking or standing).XRays indicated Arthritis in my spine so Doc ordered an MRI 12/11/08 and the results are:
1. Congenitally short Pedicles with ligamentum flavum hypertrophy and facet arthropathy narrowing the spinal canal at multiple levels. I have all the systems of the spinal canal narrowing.
2. Findings suspicious for metastatic disease in the lower lumbar spine predominantly L5 and S1. Bone Scan would be of benefit.
A Bone Scan was completed today. Richard and Debbie
December 9, 2008
Had my latest Lupron shot this date. Doctor stated that I looked healthy.
Had my latest Lupron shot this date. Doctor stated that I looked healthy.
November 6, 2008
Did my lab work for my PSA on October 28th and the result was a PSA of <.1 and no free PSA available because it can't be calculated with a PSA of <.1. My next action should be getting my next Lupron shot the first week of December.
Did my lab work for my PSA on October 28th and the result was a PSA of <.1 and no free PSA available because it can't be calculated with a PSA of <.1. My next action should be getting my next Lupron shot the first week of December.
August 1,2008
Received my Lupon Shot today. Instead of the 3 month shot my Urologist gave a 4 month shot. So far I can not complain all that much about side affects.
Received my Lupon Shot today. Instead of the 3 month shot my Urologist gave a 4 month shot. So far I can not complain all that much about side affects.
July 24th, 2008
I am a graduate of Proton! My completion date PSA is .21, Free PSA 0.08, Percent Free PSA 38.1 with testosterone level of 14.6
Now we can try and get on with life and look at PCa in the rear view mirror except for the recommended 2 years of hormone therapy. I can live with ED, hot flashes and the emotional roller coaster of Lupron and Casodex. I can say that because I have a wonderful wife and best friend who assures me she can also live with me with those traits. She laughs and says "Yeah, we share those traits my love".
It seems I as the cancer patient gets most if not all the attention. Well, it is time to give Debbie what she deserves. She has been my rock and not one that drowns me but one that keeps me grounded. She was their the night my urologist called and told me I had aggressive cancer. She has been by my side in every step I have taken from day 1. She has held me when those dang tears came. She has shared my journey here at the Proton Institute. She has accompanied me and sat in the lobby with other care givers while we men get beamed up. She has been there at every doctor visit. I do not even want to think what this journey would be like without her. I ask each of you that have lifted us in prayer to now offer thanks to the Lord for the success of my treatment.
I am a graduate of Proton! My completion date PSA is .21, Free PSA 0.08, Percent Free PSA 38.1 with testosterone level of 14.6
Now we can try and get on with life and look at PCa in the rear view mirror except for the recommended 2 years of hormone therapy. I can live with ED, hot flashes and the emotional roller coaster of Lupron and Casodex. I can say that because I have a wonderful wife and best friend who assures me she can also live with me with those traits. She laughs and says "Yeah, we share those traits my love".
It seems I as the cancer patient gets most if not all the attention. Well, it is time to give Debbie what she deserves. She has been my rock and not one that drowns me but one that keeps me grounded. She was their the night my urologist called and told me I had aggressive cancer. She has been by my side in every step I have taken from day 1. She has held me when those dang tears came. She has shared my journey here at the Proton Institute. She has accompanied me and sat in the lobby with other care givers while we men get beamed up. She has been there at every doctor visit. I do not even want to think what this journey would be like without her. I ask each of you that have lifted us in prayer to now offer thanks to the Lord for the success of my treatment.
July 22nd, 2008
Only 3 treatments left. We went to Savanna Saturday and I found out how really fatigued I am. It was not and humid and to really see Savanna you have to walk. I could not do it so the day was not what we had hoped for when we started our day. Savanna is a really old and beautiful city. The river front streets are made of cobble/ballist stones and still have the old rail tracks down the middle. Oh yes, the streets are really narrow, must like Saint Augustine.
We know how animals can get to us. Shortly after we first got here to the RV park we noticed a female cat in very bad shape. It was obvious she was nursing kittens. She stayed in the woods or snuck around the RVs staying well away from us.
After a few days of seeing her and realizing that she was wild (feral), we thought about the possibility of rabies. We even thought about saying something to management so they could possibly have animal control trap her. This I know would be the easy task. Finding where she had her babies hidden would be another thing. Animals, even tame that revert back to feral have an instinct to keep their babies safe.
Well we decided to buy cat food and feed her while we were here. Finally, after about 4 weeks, we noticed small kittens in the edge of the woods but they would not come out.
Well last week they finally ventured to the food bowl and you could imagine the yum yum they omitted when they tasted the morsels of cat food offered. Even so, they are more cautious than momma. She will now allow us to get within about 2-3 feet while she waits for food. They see you approaching and they are off to the woods.
While sitting for long periods of time over the last 6 weeks or so watching her and looking for kittens has help us spend time together and forget why we are here.
Now we face the question of what to do. I know she is still wild enough to make it in the wild and we have not provided enough time for the kittens to become accustomed to being fed. Do we pack up and leave on Friday without saying anything to anyone or do we inform management of what we have done as this will make it much easier to trap her and her kittens. They are conditioned to coming to the food bowl every evening. When we get back to the site in the evenings she is sitting waiting.
I know that once feral it is vertually impossible to retame an animal and even if possible, few have the patience or time to try to accomplish the task. I know also the threat they pose for carrying rabies.
As they say about people coming into your life for a TIME, A SEASON, or a REASON so can an animal.
I like to play spades on the internet. Well last night I was playing and mentioned I had cancer. During the chat during the game I mentioned PSA. My pardner who said he was 57 asked what that was. I was shocked but not really surprised that someone that age did not know what it was. I quickly told him he needed to talk to his doctor. I hope he follows through.
My message to anyone who will listen is get their PSA testing started at 40 or if over 40 start now and keep track of it. It could mean their life.
Only 3 treatments left. We went to Savanna Saturday and I found out how really fatigued I am. It was not and humid and to really see Savanna you have to walk. I could not do it so the day was not what we had hoped for when we started our day. Savanna is a really old and beautiful city. The river front streets are made of cobble/ballist stones and still have the old rail tracks down the middle. Oh yes, the streets are really narrow, must like Saint Augustine.
We know how animals can get to us. Shortly after we first got here to the RV park we noticed a female cat in very bad shape. It was obvious she was nursing kittens. She stayed in the woods or snuck around the RVs staying well away from us.
After a few days of seeing her and realizing that she was wild (feral), we thought about the possibility of rabies. We even thought about saying something to management so they could possibly have animal control trap her. This I know would be the easy task. Finding where she had her babies hidden would be another thing. Animals, even tame that revert back to feral have an instinct to keep their babies safe.
Well we decided to buy cat food and feed her while we were here. Finally, after about 4 weeks, we noticed small kittens in the edge of the woods but they would not come out.
Well last week they finally ventured to the food bowl and you could imagine the yum yum they omitted when they tasted the morsels of cat food offered. Even so, they are more cautious than momma. She will now allow us to get within about 2-3 feet while she waits for food. They see you approaching and they are off to the woods.
While sitting for long periods of time over the last 6 weeks or so watching her and looking for kittens has help us spend time together and forget why we are here.
Now we face the question of what to do. I know she is still wild enough to make it in the wild and we have not provided enough time for the kittens to become accustomed to being fed. Do we pack up and leave on Friday without saying anything to anyone or do we inform management of what we have done as this will make it much easier to trap her and her kittens. They are conditioned to coming to the food bowl every evening. When we get back to the site in the evenings she is sitting waiting.
I know that once feral it is vertually impossible to retame an animal and even if possible, few have the patience or time to try to accomplish the task. I know also the threat they pose for carrying rabies.
As they say about people coming into your life for a TIME, A SEASON, or a REASON so can an animal.
I like to play spades on the internet. Well last night I was playing and mentioned I had cancer. During the chat during the game I mentioned PSA. My pardner who said he was 57 asked what that was. I was shocked but not really surprised that someone that age did not know what it was. I quickly told him he needed to talk to his doctor. I hope he follows through.
My message to anyone who will listen is get their PSA testing started at 40 or if over 40 start now and keep track of it. It could mean their life.
July 12th 2008
Another week and not much to add to this journey we are on. There is an old saying I remember about how when women are pregnant their bladder is pushed up behind their eyeballs as tears are easily shed. Well, this dang stuff called Lupron and Casodex has me in that condition. I am finding myself very emotional but it is not thinking about me that does the trick. It is when I think of my friends, some that I have never met but have a forever connection called cancer. My weekly visits with Dr. Nichols have gone good and as he said my stomach does seem to be getting better. It is now more of an ache than pain but still lingers most of the time. Another area that seems to be a little better is that last night I only got up 1 time to go to the bathroom. Well if you have lost count I have had 33 treatments and that leaves only 9 to go. It is looking good that we will depart sunny Florida on July 25th.
Another week and not much to add to this journey we are on. There is an old saying I remember about how when women are pregnant their bladder is pushed up behind their eyeballs as tears are easily shed. Well, this dang stuff called Lupron and Casodex has me in that condition. I am finding myself very emotional but it is not thinking about me that does the trick. It is when I think of my friends, some that I have never met but have a forever connection called cancer. My weekly visits with Dr. Nichols have gone good and as he said my stomach does seem to be getting better. It is now more of an ache than pain but still lingers most of the time. Another area that seems to be a little better is that last night I only got up 1 time to go to the bathroom. Well if you have lost count I have had 33 treatments and that leaves only 9 to go. It is looking good that we will depart sunny Florida on July 25th.
July 6th 2008
Well the 4th is drawing to a close and there is not really much new to say. We saw the doctor again on Thursday and he said basically the same things he did last week. I am still having the same problems (diarrhea and abdominal cramps). The cramps are mostly after eating. I finished my 25 treatments of IMRT and now have had my first 3 Proton. There is a lot of difference in the equipment and procedures except the balloon that I get every treatment. Most patients are getting a 60cc insertion of saline (they call it an enema). This 3 day break has been nice even though the treatments are really no big deal. Not sure I ever said that we have to come in 30 minutes before our treatment time so we can drink 15 ounces of water which helps to raise the bladder out of the radiation beam path. The Rad Techs on the Proton side of the house are just as great as those on the IMRT side. The keep us informed of how timely treatments are going and when to actually start drinking. They are very caring and professional. I am including a few pictures below.
Well the 4th is drawing to a close and there is not really much new to say. We saw the doctor again on Thursday and he said basically the same things he did last week. I am still having the same problems (diarrhea and abdominal cramps). The cramps are mostly after eating. I finished my 25 treatments of IMRT and now have had my first 3 Proton. There is a lot of difference in the equipment and procedures except the balloon that I get every treatment. Most patients are getting a 60cc insertion of saline (they call it an enema). This 3 day break has been nice even though the treatments are really no big deal. Not sure I ever said that we have to come in 30 minutes before our treatment time so we can drink 15 ounces of water which helps to raise the bladder out of the radiation beam path. The Rad Techs on the Proton side of the house are just as great as those on the IMRT side. The keep us informed of how timely treatments are going and when to actually start drinking. They are very caring and professional. I am including a few pictures below.
June 26th 2008
Today was see the Doctor day. He told us that my latest scan DID NOT show any evidence that the lymph node they had suspected was any longer evident. They are changing my Proton sessions to only radiate the prostate and not the lymph node. I told him I wanted to be aggressive and not passive with this cancer. He said he understood where I was coming from but to radiate where there was no cancer evident would only cause more problems. He also told me he thought my stomach cramps were from my intestines getting some radiation. He explained that where the lymph node was, had been pushing the intestines out of the way but now with the lymph node/tumor gone the intestine were most likely filling that space and getting some radiation that was irritating it. He feel this will dissipate when they stop radiating the lymph node area on Tuesday.
Today was see the Doctor day. He told us that my latest scan DID NOT show any evidence that the lymph node they had suspected was any longer evident. They are changing my Proton sessions to only radiate the prostate and not the lymph node. I told him I wanted to be aggressive and not passive with this cancer. He said he understood where I was coming from but to radiate where there was no cancer evident would only cause more problems. He also told me he thought my stomach cramps were from my intestines getting some radiation. He explained that where the lymph node was, had been pushing the intestines out of the way but now with the lymph node/tumor gone the intestine were most likely filling that space and getting some radiation that was irritating it. He feel this will dissipate when they stop radiating the lymph node area on Tuesday.
June 25th 2008
Today we passed on grilling as usual because of my stomach. Additionally storms also chased us inside not long after we started to enjoy another nice afternoon. Even with the afternoon temperatures in the 90's, if there is any light wind and we have shade so it is rather nice sitting outside watching the sun set. To sit in the lobby before and after treatment one would never really realize that virtually all the people in the lobby are involved with fighting cancer. There is a true sense of fellowship but there is little projection of fear about this cancer that we battle. The atmosphere really falls into what many who have completed Proton treatment call a Proton holiday. The most often complaint is men complaining about frequent urination. We have adopted a wild feral cat that comes around who obviously is female with kittens. She is in very poor condition so we bought a small food bowl and moist cat food and have so far got her close enough to get some pictures. She will not let us get anywhere close to her. Our site backs up to woods and that is where she come apparently is located. At the current pace my last treatment will be July 24th.
Today we passed on grilling as usual because of my stomach. Additionally storms also chased us inside not long after we started to enjoy another nice afternoon. Even with the afternoon temperatures in the 90's, if there is any light wind and we have shade so it is rather nice sitting outside watching the sun set. To sit in the lobby before and after treatment one would never really realize that virtually all the people in the lobby are involved with fighting cancer. There is a true sense of fellowship but there is little projection of fear about this cancer that we battle. The atmosphere really falls into what many who have completed Proton treatment call a Proton holiday. The most often complaint is men complaining about frequent urination. We have adopted a wild feral cat that comes around who obviously is female with kittens. She is in very poor condition so we bought a small food bowl and moist cat food and have so far got her close enough to get some pictures. She will not let us get anywhere close to her. Our site backs up to woods and that is where she come apparently is located. At the current pace my last treatment will be July 24th.
June 23rd 2008
I picked up our mail at general delivery as we were expecting script to come in. Well I have a plain yellow envelope with the name on the return address was familiar as it was one of my past role play coworkers. I figured it was a get well card. Well, it was a get well card signed by over 50 role players. It was not the card or the names that really blew me away. It was when I opened the card a money order fell out. I am not ashamed to say that I could not hold back the tears. With medical insurance paying for 100 percent of my treatment and that we have the RV and have been allowed to stay here at NAS Jacksonville as long as we need, money is not something that we have to worry about. I know from past experience there are those at role play that need or needed assistance much more than we do. The thought of those guys and ladies thinking of us at this time is really something that is hard to understand unless you have experienced a similar situation. Then while I was having a cup of coffee after my treatment an older (yes older than me) gentleman was giving the female techs a difficult time about going back for treatment before he had drank his required 15 ounces of water 30 minutes prior. I could tell that both he and his elderly wife were scared as it was only his 3rd treatment. I tried to reassure them and then a young male tech came out and we finally convinced him that nothing bad was going to happen to him because he had just finished drinking his water. The water 30 minutes before radiation helps lift the bladder out of the way of the radiation field. Remember, I have been on Lupron and Casodex (Hormone treatment) almost 2 months and it really does affect one's emotional side. As I started back to sit with Debbie and chat with a few folks a while I could not help but become emotional thinking about their fear. I had to get up and leave as I did not want to break down in the lobby. Kind of messed up Debbie's conversations I guess. Yesterday the 24th I finished my 21st treatment and am now on the downhill side of treatment. The hot flashes are not really that bad but I do have to worry about getting emotional at time. My stomach/insides have really been giving me trouble as every time I eat i get cramps. We are beginning to wonder if it might be from tomatoes so we have throw what we have away. I guess if it does not clear up soon I might have to find a doctor locally or go to NAS Jacksonville hospital sick call. I also have a little tenderness in the lower abdominal area that I suspect is from my treatment. I do see Dr. Nichols tomorrow after treatment so I can discuss these issues with him.
I picked up our mail at general delivery as we were expecting script to come in. Well I have a plain yellow envelope with the name on the return address was familiar as it was one of my past role play coworkers. I figured it was a get well card. Well, it was a get well card signed by over 50 role players. It was not the card or the names that really blew me away. It was when I opened the card a money order fell out. I am not ashamed to say that I could not hold back the tears. With medical insurance paying for 100 percent of my treatment and that we have the RV and have been allowed to stay here at NAS Jacksonville as long as we need, money is not something that we have to worry about. I know from past experience there are those at role play that need or needed assistance much more than we do. The thought of those guys and ladies thinking of us at this time is really something that is hard to understand unless you have experienced a similar situation. Then while I was having a cup of coffee after my treatment an older (yes older than me) gentleman was giving the female techs a difficult time about going back for treatment before he had drank his required 15 ounces of water 30 minutes prior. I could tell that both he and his elderly wife were scared as it was only his 3rd treatment. I tried to reassure them and then a young male tech came out and we finally convinced him that nothing bad was going to happen to him because he had just finished drinking his water. The water 30 minutes before radiation helps lift the bladder out of the way of the radiation field. Remember, I have been on Lupron and Casodex (Hormone treatment) almost 2 months and it really does affect one's emotional side. As I started back to sit with Debbie and chat with a few folks a while I could not help but become emotional thinking about their fear. I had to get up and leave as I did not want to break down in the lobby. Kind of messed up Debbie's conversations I guess. Yesterday the 24th I finished my 21st treatment and am now on the downhill side of treatment. The hot flashes are not really that bad but I do have to worry about getting emotional at time. My stomach/insides have really been giving me trouble as every time I eat i get cramps. We are beginning to wonder if it might be from tomatoes so we have throw what we have away. I guess if it does not clear up soon I might have to find a doctor locally or go to NAS Jacksonville hospital sick call. I also have a little tenderness in the lower abdominal area that I suspect is from my treatment. I do see Dr. Nichols tomorrow after treatment so I can discuss these issues with him.
June 20th 2008
Cancer treatment number 19 is done! A weekend without my beloved balloon.
I have been taking blood thinner for over 12 years and have to get a monthly blood test to ensure that my clotting time is good. My normal INR is about 2.5 where normal blood without a thinner is 1.0. At 6 and above you can start to bleed internally. I actually had them send the sheriff after me once when mine got over 6.
Well, being away from home I go to the Navy Base hospital here in Jacksonville and get registered for their lab and have my blood drawn and tested on May 29th. They send my doctor a fax of the results and his office calls me and gives me instructions. Well on the 30th the nurse calls and says, “Mr Richard, your blood is too thick. Doctor wants you to lower your daily dose to 2.5 mg and retest in a week. I had for some time been taking 4mg daily. I think, no problem as this has happened before and no big deal. I change my dose and go in on June 6th and have another test and the next day the nurse calls me and informs me that my blood is too thick and I need to go to a daily dose of 5.0mg. I think and I tell Debbie, hmmm I ain’t gonna go to 5.0. My reasoning is that if the week before 4.0 made my blood to thin what will 5.0 do? I go back to 4.0 to see what happens. On June 18th I go in to get another blood test and when I get to the office the male nurse tells me I don’t need to get blood drawn as he has a new machine that will give us an instantaneous reading. He gives my finger a prick and sticks it in the machine and my INR comes back 5.2. He says, hmmmm kinda high? Where is it normally suppose to be and I tell him 2.5. He says his machine is not real accurate over 5 so I do need to have blood drawn at the lab and have it tested. I do that and they fax the results to my doctor. I realize 5.2 is not good so I don’t take coumadin that evening as usual. The next day, Thursday the nurse calls and say my blood is to thick and I need to increase my coumadin. I say, “wait a minute, they told me yesterday it was over 5. At first she can’t find a date and then when I say it was done the 18th she says that is what I have and your INR is 1.4. Well again, having taken this stuff for ages I tell Debbie I am not doing anything and will not take my normal dose tonight (Thursday) either but will go to the hospital tomorrow and research what lab reports I can get my hands on. I go to the hospital the first thing Friday (today) and find out that the latest faxed report shows my INR is 5.0 and none of the past 3 reading are 1.4. I have no idea where the nurse got her information but it came close to having me dead. Had I blindly taken 5.0 mg coumadin for another week there is no telling where my clotting time would have been. I most likely would have started to bleed internally. I call back to my doctors office and talk to the nurse who blows me off and says that is what they had and I needed to have them refax the information and they would call me back. I go to the hospital and ask them to refax the results and they say even though they have received confirmation of their fax they will. I wait till later in the afternoon, after my treatment abut I do not get a call so before the local hospital closes (we are ahead time wise of home) so I call and talk to someone in the doctors office who knows nothing and tells me they have not received a fax. I am getting frustrated and tell her I need answers as there is a problem and the hospital will be closing soon. She takes my number and says the nurse will call me back. A few minutes later the nurse calls and says she has the report and the doctor wants me to stop coumadin for 2 days (I already have), take 4mg daily and retest in a week. I say, “wait a minute”. If 4.0 last week made my blood to thin then 4.0 this week will also. Her response is well that is what the doctor said. I tell her I want to talk to the doctor and if he is with a patient have him call me back. She gets the doctor on the phone and after a short pleasantry he tells me he thought I was on 5 and I tell him no I told your nurse twice I was taking 4mg and even that was too much. After I went thru the scenario of the last 3 weeks he agreed that 3mg was a proper dose and they would call in a script for that amount and told me to retest next Thursday. I am 800 miles from home and I have no idea who is really at fault but I have my suspicions. I will deal with this when we return home. Doctors do not like patients who diagnose themselves but sometimes it is necessary. Had I blindly taken what the nurse told me I would probably be bleeding internally and maybe even dead. I told Debbie at least she would be financially taken care of after the lawsuit. We have to learn our bodies and how they react to what others want us to put into or do to them. The morale of this tale is that we have to be our own best advocates. No one will take as much care of us as ourselves and those who love us.
Cancer treatment number 19 is done! A weekend without my beloved balloon.
I have been taking blood thinner for over 12 years and have to get a monthly blood test to ensure that my clotting time is good. My normal INR is about 2.5 where normal blood without a thinner is 1.0. At 6 and above you can start to bleed internally. I actually had them send the sheriff after me once when mine got over 6.
Well, being away from home I go to the Navy Base hospital here in Jacksonville and get registered for their lab and have my blood drawn and tested on May 29th. They send my doctor a fax of the results and his office calls me and gives me instructions. Well on the 30th the nurse calls and says, “Mr Richard, your blood is too thick. Doctor wants you to lower your daily dose to 2.5 mg and retest in a week. I had for some time been taking 4mg daily. I think, no problem as this has happened before and no big deal. I change my dose and go in on June 6th and have another test and the next day the nurse calls me and informs me that my blood is too thick and I need to go to a daily dose of 5.0mg. I think and I tell Debbie, hmmm I ain’t gonna go to 5.0. My reasoning is that if the week before 4.0 made my blood to thin what will 5.0 do? I go back to 4.0 to see what happens. On June 18th I go in to get another blood test and when I get to the office the male nurse tells me I don’t need to get blood drawn as he has a new machine that will give us an instantaneous reading. He gives my finger a prick and sticks it in the machine and my INR comes back 5.2. He says, hmmmm kinda high? Where is it normally suppose to be and I tell him 2.5. He says his machine is not real accurate over 5 so I do need to have blood drawn at the lab and have it tested. I do that and they fax the results to my doctor. I realize 5.2 is not good so I don’t take coumadin that evening as usual. The next day, Thursday the nurse calls and say my blood is to thick and I need to increase my coumadin. I say, “wait a minute, they told me yesterday it was over 5. At first she can’t find a date and then when I say it was done the 18th she says that is what I have and your INR is 1.4. Well again, having taken this stuff for ages I tell Debbie I am not doing anything and will not take my normal dose tonight (Thursday) either but will go to the hospital tomorrow and research what lab reports I can get my hands on. I go to the hospital the first thing Friday (today) and find out that the latest faxed report shows my INR is 5.0 and none of the past 3 reading are 1.4. I have no idea where the nurse got her information but it came close to having me dead. Had I blindly taken 5.0 mg coumadin for another week there is no telling where my clotting time would have been. I most likely would have started to bleed internally. I call back to my doctors office and talk to the nurse who blows me off and says that is what they had and I needed to have them refax the information and they would call me back. I go to the hospital and ask them to refax the results and they say even though they have received confirmation of their fax they will. I wait till later in the afternoon, after my treatment abut I do not get a call so before the local hospital closes (we are ahead time wise of home) so I call and talk to someone in the doctors office who knows nothing and tells me they have not received a fax. I am getting frustrated and tell her I need answers as there is a problem and the hospital will be closing soon. She takes my number and says the nurse will call me back. A few minutes later the nurse calls and says she has the report and the doctor wants me to stop coumadin for 2 days (I already have), take 4mg daily and retest in a week. I say, “wait a minute”. If 4.0 last week made my blood to thin then 4.0 this week will also. Her response is well that is what the doctor said. I tell her I want to talk to the doctor and if he is with a patient have him call me back. She gets the doctor on the phone and after a short pleasantry he tells me he thought I was on 5 and I tell him no I told your nurse twice I was taking 4mg and even that was too much. After I went thru the scenario of the last 3 weeks he agreed that 3mg was a proper dose and they would call in a script for that amount and told me to retest next Thursday. I am 800 miles from home and I have no idea who is really at fault but I have my suspicions. I will deal with this when we return home. Doctors do not like patients who diagnose themselves but sometimes it is necessary. Had I blindly taken what the nurse told me I would probably be bleeding internally and maybe even dead. I told Debbie at least she would be financially taken care of after the lawsuit. We have to learn our bodies and how they react to what others want us to put into or do to them. The morale of this tale is that we have to be our own best advocates. No one will take as much care of us as ourselves and those who love us.
June 19th 2008
Today I had a new CT with the water inserted into the rectum instead of the balloon. I passed as there was no evidence of excess gas. I have been been conscious of what I eat. I also had a new MRI. I suspect I will have to wait till next weeks doctor appointment to get any results. Side affects have been a little loss of appetite, nausea, and fatigue.
Today I had a new CT with the water inserted into the rectum instead of the balloon. I passed as there was no evidence of excess gas. I have been been conscious of what I eat. I also had a new MRI. I suspect I will have to wait till next weeks doctor appointment to get any results. Side affects have been a little loss of appetite, nausea, and fatigue.
June 18, 2008
I saw Dr. Nichols and he went over my treatment plans and it is a little different than I thought. I will have 25 IMRT and 17 Proton treatments. He showed the pictures of the areas that they are radiating the prostate and also the entire leftside of my pelvic area to hit the suspected lymph node. When I start Proton, he said I would get 2 daily doses at the same time, one to the prostate and one to the lymph node. This would all be done at the same treatment.
I saw Dr. Nichols and he went over my treatment plans and it is a little different than I thought. I will have 25 IMRT and 17 Proton treatments. He showed the pictures of the areas that they are radiating the prostate and also the entire leftside of my pelvic area to hit the suspected lymph node. When I start Proton, he said I would get 2 daily doses at the same time, one to the prostate and one to the lymph node. This would all be done at the same treatment.
June 16, 2008
Sorry I have not posted lately but not much to say. We have 16 treatments down and 26 to go. This should be my last week of photon (IMRT)then approximately 5 weeks of Proton. So far so good, with only a little night time hot flash at which Debbie laughs. Yesterday was kind of rough as I had bowel problems, upset stomach and a little fatique. I was still able to grill some 2 inch think pork chops that turned out so delicious. Oh, on Saturday for Father's day we had BBQ steaks, grilled corn on the cob and grilled squash. We did it on Saturday as the weather was forecast and did get nasty with storms and rain on Sunday. The only other problem is my blood thinner has gotten out of wack and I have had to have a blood test each of the last 2 weeks and again this afternoon before my treatment. I go to the Navy hospital and get the blood work done. They have made the process super easy. I see the doctor tomorrow and will report any significant facts here.
Sorry I have not posted lately but not much to say. We have 16 treatments down and 26 to go. This should be my last week of photon (IMRT)then approximately 5 weeks of Proton. So far so good, with only a little night time hot flash at which Debbie laughs. Yesterday was kind of rough as I had bowel problems, upset stomach and a little fatique. I was still able to grill some 2 inch think pork chops that turned out so delicious. Oh, on Saturday for Father's day we had BBQ steaks, grilled corn on the cob and grilled squash. We did it on Saturday as the weather was forecast and did get nasty with storms and rain on Sunday. The only other problem is my blood thinner has gotten out of wack and I have had to have a blood test each of the last 2 weeks and again this afternoon before my treatment. I go to the Navy hospital and get the blood work done. They have made the process super easy. I see the doctor tomorrow and will report any significant facts here.
June 9, 2008, 16:00
Today as my treatment was finishing up an alarm goes off. I felt I had a gas bubble moving through me and wondered if that was what the alarm was about (lol). At first they came in and told me no problem just a test but then I was told to leave the building as it was an actual fire. Here I am in a skimy hospital gown that barely covers my hinney. In my hurry to get into the gowning room and get dressed I ripped another place on my arm. This time it is on my left arm just below the elbow. I was probably the last patient out of the building, as I walked out the sidewalk was full of those who were waiting for treatment. I guess some will be delayed a while. The fire department was there as we left and we do not know what actually happened. I will find out tomorrow at 5:40 unless I get a call sooner. Oh, the Brisket turned out super, so tastey.
Today as my treatment was finishing up an alarm goes off. I felt I had a gas bubble moving through me and wondered if that was what the alarm was about (lol). At first they came in and told me no problem just a test but then I was told to leave the building as it was an actual fire. Here I am in a skimy hospital gown that barely covers my hinney. In my hurry to get into the gowning room and get dressed I ripped another place on my arm. This time it is on my left arm just below the elbow. I was probably the last patient out of the building, as I walked out the sidewalk was full of those who were waiting for treatment. I guess some will be delayed a while. The fire department was there as we left and we do not know what actually happened. I will find out tomorrow at 5:40 unless I get a call sooner. Oh, the Brisket turned out super, so tastey.
June 6, 2008, 16:00
Week two of radiation has gone by without a hitch. The most exciting thing to happen is that yesterday as I was entering the gowning room to change for treatment I turned suddenly when spoken to. I ripped a 3 inch gash about a 1/4 inch across my forearm just below the elbow. Naturally being on coumadin and my blood being a little to thin I tend to bleed profusely. Finally, the nurses station and got a bandage on and cleaned the blood off my arm so I could continue with my treatment uninterupted. Today I am having a hard time stopping the bleeding as it continues to want to bleed through several layers of bandages. It does not hurt but I am having to be careful of not leaving a blood trail anywhere. Debbie is adding bandages as I type. I think I might have actually had a hot flash last night while sleeping. I had all the covers off and was hot and that is not like me at all. I normally sleep under a sheet and blanket as Debbie keeps me in a meat locker atmosphere. I arrived early at 3 PM for a 4:20 treatment time and was met at the door and was told to drink my 15 ounces of water in a hurry as they wanted to fill in for someone who had not shown up or called. We were early because we had gone to have my INR/PT (blood thinner) at the Navy hospital. After we finished we were drinking coffee and chatting with another patient when a young boy (age 9) came out of treatment. Then as now it is hard to hold back the tears. He was in good spirits but you could see the huge scar on the top of his head as he no hair. Please say a prayer for all those we do not personally know but who fight this same fight. We bought a nice beef brisket for the grill tomorrow. Anyone care to join us and celebrate Debbie's 48th Birthday. Richard & Debbie :) :) :)
Week two of radiation has gone by without a hitch. The most exciting thing to happen is that yesterday as I was entering the gowning room to change for treatment I turned suddenly when spoken to. I ripped a 3 inch gash about a 1/4 inch across my forearm just below the elbow. Naturally being on coumadin and my blood being a little to thin I tend to bleed profusely. Finally, the nurses station and got a bandage on and cleaned the blood off my arm so I could continue with my treatment uninterupted. Today I am having a hard time stopping the bleeding as it continues to want to bleed through several layers of bandages. It does not hurt but I am having to be careful of not leaving a blood trail anywhere. Debbie is adding bandages as I type. I think I might have actually had a hot flash last night while sleeping. I had all the covers off and was hot and that is not like me at all. I normally sleep under a sheet and blanket as Debbie keeps me in a meat locker atmosphere. I arrived early at 3 PM for a 4:20 treatment time and was met at the door and was told to drink my 15 ounces of water in a hurry as they wanted to fill in for someone who had not shown up or called. We were early because we had gone to have my INR/PT (blood thinner) at the Navy hospital. After we finished we were drinking coffee and chatting with another patient when a young boy (age 9) came out of treatment. Then as now it is hard to hold back the tears. He was in good spirits but you could see the huge scar on the top of his head as he no hair. Please say a prayer for all those we do not personally know but who fight this same fight. We bought a nice beef brisket for the grill tomorrow. Anyone care to join us and celebrate Debbie's 48th Birthday. Richard & Debbie :) :) :)
May 30, 2008, 16:00
Well my first month of hormone treatment of Lupron and Casodex is nearing an end and as of now I have not noted any of the side effects that they say accompanies it. My first week (4 treatment) of radiation also went well with the biggest pain being the 4-5 PM traffic in and out of Jacksonville. Here is hoping that weekly updates will be sufficient to cover what is going on with us.
Well my first month of hormone treatment of Lupron and Casodex is nearing an end and as of now I have not noted any of the side effects that they say accompanies it. My first week (4 treatment) of radiation also went well with the biggest pain being the 4-5 PM traffic in and out of Jacksonville. Here is hoping that weekly updates will be sufficient to cover what is going on with us.
>May 27, 2008, 16:00
Finally, I had my first radiation treatment. Took about 30 minutes total time from being called to leaving the treatment area. First you undress from the waist down except you can keep your socks on. During the treatment they first insert the old balloon and blow it up. You then slide into the body mold flat on your back. The balloon is to elavated the prostate into a more favorable location for radiation. The treatment is very similar to a CT or MRI in equipment movement and sounds. I learned I will be having a total of 42 treatments, 19 being conventional and the remaining 23 proton. I will be reporting any significant changes or infomation as necessary.
Finally, I had my first radiation treatment. Took about 30 minutes total time from being called to leaving the treatment area. First you undress from the waist down except you can keep your socks on. During the treatment they first insert the old balloon and blow it up. You then slide into the body mold flat on your back. The balloon is to elavated the prostate into a more favorable location for radiation. The treatment is very similar to a CT or MRI in equipment movement and sounds. I learned I will be having a total of 42 treatments, 19 being conventional and the remaining 23 proton. I will be reporting any significant changes or infomation as necessary.
May 22, 2008, 14:30
What a bummer today has turned out to be. Got the call that has become routine,
that my schedule was being delayed. The tell me they have a completed plan for me
but the physisists have a question and will not sign off on the plan until they discuss
it with Dr. Nichols. Doctor Nichols is not in the office until Tuesday, as Monday
is a holiday. He is apparently busy with the international conference they are
having at UFPTI this week. I was told they only have one doctor in the clinic this week. I imagine that this might also affect those folks out there that have sent packages for review, trying to get their first consultation. Also those who have not been scheduled for their 3 day work up will most likely be affected also. Debbie say stop, but it is easy to look back and think that had I accepted the initial plan offered by MD Anderson that I would not be sitting here with cancer growing in my body. At least I would be through with the inital radiation and possibly on my way to being cancer free. Now we have a holiday weekend with no plans at all. We will be back to post here again on Tuesday.
What a bummer today has turned out to be. Got the call that has become routine,
that my schedule was being delayed. The tell me they have a completed plan for me
but the physisists have a question and will not sign off on the plan until they discuss
it with Dr. Nichols. Doctor Nichols is not in the office until Tuesday, as Monday
is a holiday. He is apparently busy with the international conference they are
having at UFPTI this week. I was told they only have one doctor in the clinic this week. I imagine that this might also affect those folks out there that have sent packages for review, trying to get their first consultation. Also those who have not been scheduled for their 3 day work up will most likely be affected also. Debbie say stop, but it is easy to look back and think that had I accepted the initial plan offered by MD Anderson that I would not be sitting here with cancer growing in my body. At least I would be through with the inital radiation and possibly on my way to being cancer free. Now we have a holiday weekend with no plans at all. We will be back to post here again on Tuesday.
May 19, 2008, 15:40: Day 1 of IMRT
Well my first radiation appointment has again been changed. Not once but twice in less than 2 hours. First got a call to reschedule to Wednesday the 21st and before I could send out emails the phone rings and it is now Thursday the 22nd at 2:30. I hope this is my last postponement. At this rate it will be August before we get finished. It has now been 4 months since my diagnosis and the delay is begining to get into my mind. All we can do is to be patient.
Well my first radiation appointment has again been changed. Not once but twice in less than 2 hours. First got a call to reschedule to Wednesday the 21st and before I could send out emails the phone rings and it is now Thursday the 22nd at 2:30. I hope this is my last postponement. At this rate it will be August before we get finished. It has now been 4 months since my diagnosis and the delay is begining to get into my mind. All we can do is to be patient.
May 16, 2008, 13:40: D Day minus 1 of IMRT
Well, I am not glowing yet. Found out when I got to UFPTI that today was a run through called a block day. It was a duplicate of a regular radiation day but with no radiation. They got me naked from the waist down and had me put on one of those open in the back gowns on. It barely covered my privates as I am 6 foot 6. They had to adjust the table for my head. They then asked me to roll onto my right side. A small probe was inserted and then the balloon was filled with air. A little discomfort but nothing earth shattering. Once I was rolled back into my mold they gave me my ring to hold onto with both hands and then proceeded to take a couple pictures that were for my doctor. After they were finished, I cleaned myself and got dressed. The entire process took less than 30 minutes.
After my session I met some other proton guys and their wives that Debbie had met and was talking to while I was in my session. Pete and Bob are both further alone in treatment than I am. Pete and his wife Grace use to grow mushrooms and also are staying in an RV north of town. Bob and Pete are both retired military. The weather has turned nasty and it looks like storms for this evening. Another guy who is also 6 foot 6 told us he was told that M.D. Anderson had a height limit of 6 foot 4. Also, we met a lady, Janet Whittaker with 'distinctive Logos' who was selling U of Florida Proton Therapy Institute shirts, hats, bags, and jackets with the Proton emblem on the merchandise. I bought a ball cap (see picture) I will start my regular treatment on nday.
Well, I am not glowing yet. Found out when I got to UFPTI that today was a run through called a block day. It was a duplicate of a regular radiation day but with no radiation. They got me naked from the waist down and had me put on one of those open in the back gowns on. It barely covered my privates as I am 6 foot 6. They had to adjust the table for my head. They then asked me to roll onto my right side. A small probe was inserted and then the balloon was filled with air. A little discomfort but nothing earth shattering. Once I was rolled back into my mold they gave me my ring to hold onto with both hands and then proceeded to take a couple pictures that were for my doctor. After they were finished, I cleaned myself and got dressed. The entire process took less than 30 minutes.
After my session I met some other proton guys and their wives that Debbie had met and was talking to while I was in my session. Pete and Bob are both further alone in treatment than I am. Pete and his wife Grace use to grow mushrooms and also are staying in an RV north of town. Bob and Pete are both retired military. The weather has turned nasty and it looks like storms for this evening. Another guy who is also 6 foot 6 told us he was told that M.D. Anderson had a height limit of 6 foot 4. Also, we met a lady, Janet Whittaker with 'distinctive Logos' who was selling U of Florida Proton Therapy Institute shirts, hats, bags, and jackets with the Proton emblem on the merchandise. I bought a ball cap (see picture) I will start my regular treatment on nday.
May 2, 2008
1400 hours, I had my first shot of Lupron and have my script for Casodex.
1400 hours, I had my first shot of Lupron and have my script for Casodex.
May 1, 2008
Went in at 9:45 for imaging appointment with another MRI, this time with rectal balloon. I also had another series of CTs with another rectal balloon. These procedures took approximately 2 hours. They made my body mold for my initial IMRT. I was given my schedule for my first treatment which will be 5/15/2008 at 12:30.
Went in at 9:45 for imaging appointment with another MRI, this time with rectal balloon. I also had another series of CTs with another rectal balloon. These procedures took approximately 2 hours. They made my body mold for my initial IMRT. I was given my schedule for my first treatment which will be 5/15/2008 at 12:30.
april 30, 2008
At 0800 we met with Dr. Petal (urologist) who implanted 4 seed markers. During his exam (DRE) he noted a nodule on the prostate which had never been noted by previous DREs. This procedure is similar to a biopsy just reversed and with lydocane there was minimal discomfort.
3:00 MRI of pelvic area.
At 0800 we met with Dr. Petal (urologist) who implanted 4 seed markers. During his exam (DRE) he noted a nodule on the prostate which had never been noted by previous DREs. This procedure is similar to a biopsy just reversed and with lydocane there was minimal discomfort.
3:00 MRI of pelvic area.
April 29, 2008
Lab work and meeting with Dr. Nichols in the morning. He says PET scan indicated possible lymph node involvement BUT that the Prostascint which is more definitive indicated that the lymph nodes were clear. He was concerned because of the aggressive nature of my cancer and wanted to have a consultation with other staff members to decide on a treatment protocol and scheduled us to return after lunch to discuss the results. It was determined that the best protocol was to start immediately on hormones (22.5 mg/Lupron) with Casodex,to help with the side affects. The conventional radiation plan is yet to be determined but initially radiate the pelvic area with conventional IMRT and then finish with Proton to the prostate. The treatment is anticipated to start sooner (2-3 weeks versus 4-5) for approximately 4 weeks of IMRT and then Proton to the prostate for another 4 weeks. Hormone treatments would continue for up to 2 years. My appointment with the Medical Oncologist was cancelled.
Lab work and meeting with Dr. Nichols in the morning. He says PET scan indicated possible lymph node involvement BUT that the Prostascint which is more definitive indicated that the lymph nodes were clear. He was concerned because of the aggressive nature of my cancer and wanted to have a consultation with other staff members to decide on a treatment protocol and scheduled us to return after lunch to discuss the results. It was determined that the best protocol was to start immediately on hormones (22.5 mg/Lupron) with Casodex,to help with the side affects. The conventional radiation plan is yet to be determined but initially radiate the pelvic area with conventional IMRT and then finish with Proton to the prostate. The treatment is anticipated to start sooner (2-3 weeks versus 4-5) for approximately 4 weeks of IMRT and then Proton to the prostate for another 4 weeks. Hormone treatments would continue for up to 2 years. My appointment with the Medical Oncologist was cancelled.
April 21, 2009
Got our call from UFPTI about being scheduled. Our schedule is as follows:
Got our call from UFPTI about being scheduled. Our schedule is as follows:
April 29 0745 Nurse and Lab work
April 30 0800 Get gold markers implanted for proton beam guidance
1200 Orientation
15:30 MRI
May 1 0945 Imaging for mold
1330 Medical Oncologist
April 30 0800 Get gold markers implanted for proton beam guidance
1200 Orientation
15:30 MRI
May 1 0945 Imaging for mold
1330 Medical Oncologist
March 19, 2008
Received a call today from the Institute and they are scheduling me for a PET Scan and a Prostascint Scan to be done in Lake Charles. These tests will be on the 24th, 28th, 1st and 2nd. Once they get the results I will be scheduled to return to Jacksonville for the 3 day work up. This will include additional tests and the placement of fiducial markers (gold) in the prostate to guide the proton beam. Once this is completed I would be scheduled for my treatment and return to Jacksonville for 8 weeks of treatment Monday - Friday.
Received a call today from the Institute and they are scheduling me for a PET Scan and a Prostascint Scan to be done in Lake Charles. These tests will be on the 24th, 28th, 1st and 2nd. Once they get the results I will be scheduled to return to Jacksonville for the 3 day work up. This will include additional tests and the placement of fiducial markers (gold) in the prostate to guide the proton beam. Once this is completed I would be scheduled for my treatment and return to Jacksonville for 8 weeks of treatment Monday - Friday.
March 15, 2008
We returned home from our visit to Jacksonville, FL and the U of Florida Proton Institute tonight. We met with the financial folks and are please to say 100% insurance coverage, 80% Medicare and the remaining 20% Tricare for Life. We also met with doctor Nichols who said I was an anomaly in that I had a relatively low PSA but a high Gleason score (highest PSA 7.7 and GS9, lowered from 10 by MD Anderson). His only comment concerning the DRE was that it was a little firm and made me feel positive about being accepted for proton treatment. He indicated that he did not believe there was any lymph node involvement. They took some measurements and I had another CT of the pelvis to mainly determine my body density as the proton beam can only go through so much body tissue and each of us is individual. Also had more blood work accomplished. I did not get any results from either CT or blood work. They have a priority system of sorts so when we might receive treatment could vary. We were told that we would hear from them concerning our acceptance for proton treatment next week. While we were there we were given a 2 hour tour of the facilities ( www.floridaproton.org ) which included a discussion of its history, various types of radiation and various programs (cancers) that they were involved with. If we are accepted we will have to go back to Jacksonville for a 3-4 day visit to do more of the preliminary tests and measurements in preparation for actual treatment. This would probably be in 3-4 weeks. After this visit we would then go back for the actual treatment based on our determined priority some time later. There is an estimated 40 treatments done M-F for 8 weeks. We are glad to be home and anxiously await their determination.
We returned home from our visit to Jacksonville, FL and the U of Florida Proton Institute tonight. We met with the financial folks and are please to say 100% insurance coverage, 80% Medicare and the remaining 20% Tricare for Life. We also met with doctor Nichols who said I was an anomaly in that I had a relatively low PSA but a high Gleason score (highest PSA 7.7 and GS9, lowered from 10 by MD Anderson). His only comment concerning the DRE was that it was a little firm and made me feel positive about being accepted for proton treatment. He indicated that he did not believe there was any lymph node involvement. They took some measurements and I had another CT of the pelvis to mainly determine my body density as the proton beam can only go through so much body tissue and each of us is individual. Also had more blood work accomplished. I did not get any results from either CT or blood work. They have a priority system of sorts so when we might receive treatment could vary. We were told that we would hear from them concerning our acceptance for proton treatment next week. While we were there we were given a 2 hour tour of the facilities ( www.floridaproton.org ) which included a discussion of its history, various types of radiation and various programs (cancers) that they were involved with. If we are accepted we will have to go back to Jacksonville for a 3-4 day visit to do more of the preliminary tests and measurements in preparation for actual treatment. This would probably be in 3-4 weeks. After this visit we would then go back for the actual treatment based on our determined priority some time later. There is an estimated 40 treatments done M-F for 8 weeks. We are glad to be home and anxiously await their determination.
March 6, 2008
Got the call from U of Florida Proton Therapy Institute this AM and have an appointment on the 13th to see a Doctor and have another CT. They said the follow-up would be about 3 weeks to get me ready for my treatments.
Got the call from U of Florida Proton Therapy Institute this AM and have an appointment on the 13th to see a Doctor and have another CT. They said the follow-up would be about 3 weeks to get me ready for my treatments.
February 26, 2008
We had an appointment with Dr Fagin in Austin, TX on 2/19/08. After providing my medical history and meeting with him he did not recommend I have surgery but rather seek HT/Rad. His comment that his statement was coming from a surgeon should carry some weight. As we left him, his last words were that he hoped he did not see me on the Operating table. I was impressed and would recommend him to those considering surgery. We returned home and contacted the U of Florida Proton Therapy Institute on 2/22/08 and will submit a package to them for hopefully a consult. We are awaiting the CD of the Abdominal/Pelvis CT from MD Anderson. Loma Linda is not out of the question at this point in time but they called and said they were off line and did not know when they might return. They suggested with my high gleason I should look elsewhere. If no luck with Proton we will be looking to find treatment in Austin, TX
We had an appointment with Dr Fagin in Austin, TX on 2/19/08. After providing my medical history and meeting with him he did not recommend I have surgery but rather seek HT/Rad. His comment that his statement was coming from a surgeon should carry some weight. As we left him, his last words were that he hoped he did not see me on the Operating table. I was impressed and would recommend him to those considering surgery. We returned home and contacted the U of Florida Proton Therapy Institute on 2/22/08 and will submit a package to them for hopefully a consult. We are awaiting the CD of the Abdominal/Pelvis CT from MD Anderson. Loma Linda is not out of the question at this point in time but they called and said they were off line and did not know when they might return. They suggested with my high gleason I should look elsewhere. If no luck with Proton we will be looking to find treatment in Austin, TX
February 15, 2008
Well a lot of prayers have been heard as we received good news in that CT of Abdomen and Pelvis 2/14/08 show no METS. Dr Araujo recommends Hormone Therapy and Radiation as he feels even though no signs of METS, the prostate has probably escaped the capsule. He bases this on a high Gleason, ED and lack of semen. He told us that if we decided to have surgery he would not say we were wrong.
MD Anderson will not do surgery on a Gleason 9 so we have to decide our course of action. Go home and have local Urologist do surgery or see if we can get it done in Austin at the Prostate Cancer Center or have MD Anderson start Hormone/Radiation treatment. One problem with surgery may be my past medical history,i.e. one functioning kidney, previous Abdominal Aortic Aneurysm repair, several vascular replacements in leg (poor circulation), Carotid surgery, AFib heart. I also have a gallstone and a hernia that needs attention. What I have found is that a large percentage of Gleason 8-10s that had surgery eventually have to have hormone/radiation. Also it seems guys with 8-10 have a high rate of PCa outside the capsule. The decision will be to have or not have surgery and I will post our decision soon.
Well a lot of prayers have been heard as we received good news in that CT of Abdomen and Pelvis 2/14/08 show no METS. Dr Araujo recommends Hormone Therapy and Radiation as he feels even though no signs of METS, the prostate has probably escaped the capsule. He bases this on a high Gleason, ED and lack of semen. He told us that if we decided to have surgery he would not say we were wrong.
MD Anderson will not do surgery on a Gleason 9 so we have to decide our course of action. Go home and have local Urologist do surgery or see if we can get it done in Austin at the Prostate Cancer Center or have MD Anderson start Hormone/Radiation treatment. One problem with surgery may be my past medical history,i.e. one functioning kidney, previous Abdominal Aortic Aneurysm repair, several vascular replacements in leg (poor circulation), Carotid surgery, AFib heart. I also have a gallstone and a hernia that needs attention. What I have found is that a large percentage of Gleason 8-10s that had surgery eventually have to have hormone/radiation. Also it seems guys with 8-10 have a high rate of PCa outside the capsule. The decision will be to have or not have surgery and I will post our decision soon.
February 13,
2008
Well we spent from 7AM till 9PM at MD Anderson yesterday. The initial consult with Dr Araujo was not what we wanted to hear. He suspects the PCa has been there a long time and that with the prostate drugs I have been on my PSA should have been doubled and was probably more like 16 than the 7.9 at last labs. He is concerned about my bone scan in the pelvic area. He ordered new abdomen and pelvic CT and blood work last night and we go back for follow-up appointment tomorrow at 2:30 which should determine what, where, when, and how we will fight this battle. He says with a Gleason of 9 (MD Anderson lab changed my Gleason Score) surgery is not recommended because he fears it would leave behind residual cancer that would only spread later and that the cancel in the prostate would not kill me but if it METS that would. He discussed Hormone treatment and Radiation. We have been making a list of new questions to ask tomorrow. I thought I was on top of this process but feel (Debbie says don't look back) I could have been more aggressive with my doctors. I am realizing that this is more complicated all the time but have come to the realization that life won't end tomorrow. As Dr Araujo said he wants me to continue to enjoy the things in life that I enjoy now and that he sees no restriction at the current time. His initial words indicate at a minimum another 8 years to reach the average male age at demise.
Well we spent from 7AM till 9PM at MD Anderson yesterday. The initial consult with Dr Araujo was not what we wanted to hear. He suspects the PCa has been there a long time and that with the prostate drugs I have been on my PSA should have been doubled and was probably more like 16 than the 7.9 at last labs. He is concerned about my bone scan in the pelvic area. He ordered new abdomen and pelvic CT and blood work last night and we go back for follow-up appointment tomorrow at 2:30 which should determine what, where, when, and how we will fight this battle. He says with a Gleason of 9 (MD Anderson lab changed my Gleason Score) surgery is not recommended because he fears it would leave behind residual cancer that would only spread later and that the cancel in the prostate would not kill me but if it METS that would. He discussed Hormone treatment and Radiation. We have been making a list of new questions to ask tomorrow. I thought I was on top of this process but feel (Debbie says don't look back) I could have been more aggressive with my doctors. I am realizing that this is more complicated all the time but have come to the realization that life won't end tomorrow. As Dr Araujo said he wants me to continue to enjoy the things in life that I enjoy now and that he sees no restriction at the current time. His initial words indicate at a minimum another 8 years to reach the average male age at demise.
February 1, 2008
After a week, MD Anderson finally called and I am scheduled to see Dr. Araujo at 0700 on 2/12/08. We know there are lots and lots of folks all over the country keeping us in their thoughts and prayers. I am continuing to work part time at Fort Polk to help the time pass. It also gives me a close bond with those serving in Iraq and Afghanistan. Please keep them in your prayers also.
My urologist called last night and gave me the results of my Chest CT which is: 1. The hot spot (bone scan) on my left rib cage is from 3 fractured ribs from when I fell just before Christmas. 2. He tells me I have a gallstone and asks if I knew it? No real symptoms. He said I would need to take care of it. 3. He told me it showed there was some COPD (40 years of smoking, quit 2001). All test completed, now just have to wait till we see MD Anderson on 2/12/08
After a week, MD Anderson finally called and I am scheduled to see Dr. Araujo at 0700 on 2/12/08. We know there are lots and lots of folks all over the country keeping us in their thoughts and prayers. I am continuing to work part time at Fort Polk to help the time pass. It also gives me a close bond with those serving in Iraq and Afghanistan. Please keep them in your prayers also.
My urologist called last night and gave me the results of my Chest CT which is: 1. The hot spot (bone scan) on my left rib cage is from 3 fractured ribs from when I fell just before Christmas. 2. He tells me I have a gallstone and asks if I knew it? No real symptoms. He said I would need to take care of it. 3. He told me it showed there was some COPD (40 years of smoking, quit 2001). All test completed, now just have to wait till we see MD Anderson on 2/12/08
January 29, 2008
Phone message from my urologist says hip x-rays negative but my chest x-ray show bone fractures or damage in the left rib cage area (bone scan hot spot, thought to be from previous injury) so he has ordered the scan (CT or MRI not sure which) of my ribs for tomorrow morning 1/30/08.
Phone message from my urologist says hip x-rays negative but my chest x-ray show bone fractures or damage in the left rib cage area (bone scan hot spot, thought to be from previous injury) so he has ordered the scan (CT or MRI not sure which) of my ribs for tomorrow morning 1/30/08.
Januray 24, 2008
My local doctor called yesterday and has ordered a chest Cat Scan scheduled for Wed 1/30/08 and I really don't know why but we are taking it as more information for the future. My two daughters live in Austin, where I lived for 25 years and my youngest suggested Dr F.A.G.N. in Austin but we chose MD Anderson because of their reputation. MD told me a couple days ago they had my referral and someone would be contacting me within 24/48 hours but no contact yet. I also work part time on call with an Army contractor at Fort Polk training soldiers for Afghanistan and Iraq (playing an Arabic civilian on the battle field) and work with several survivors who have also offered positive feedback. We are just waiting and praying.
My local doctor called yesterday and has ordered a chest Cat Scan scheduled for Wed 1/30/08 and I really don't know why but we are taking it as more information for the future. My two daughters live in Austin, where I lived for 25 years and my youngest suggested Dr F.A.G.N. in Austin but we chose MD Anderson because of their reputation. MD told me a couple days ago they had my referral and someone would be contacting me within 24/48 hours but no contact yet. I also work part time on call with an Army contractor at Fort Polk training soldiers for Afghanistan and Iraq (playing an Arabic civilian on the battle field) and work with several survivors who have also offered positive feedback. We are just waiting and praying.
January 23, 2008
I am Richard Age 68 with a history of BPH but negative biopsy 97 & 00. Annual exam 11/07 PSA rose 4.9_and given antibiotics but PSA continued to rise (7.7) so a third biopsy was done 1/10/08 which came back positive 1/16/08 with high grade PCa with a Gleason score of 10. Bone scan on 1/17/08 indicates no bone involvement but rib and pelvic ex-rays on 1/21/08 to add to the information. I have old injuries and bad arthritis with one total knee replacement and needing the other knee and hip replaced. I live in rural Louisiana along Toledo Bend Lake and my urologist is Dr Kwok in DeRidder, LA. I have been self referred to M.D. Anderson in Houston and I am waiting for them to contact me for my first appointment. I am learning how the mind can play with your thoughts. One of my big concerns is my wife who is much younger than I. She lost her previous husband to kidney cancer in 1999 and now having to deal with something like this again. I found the healingwell.com site and know this site is a blessing as one can definitely see that PCa is not an automatic death sentence and can if one let's it, prepare for the fight to beat this disease. I plan on being one of the survivors. I have been told I will hear from MD Anderson in the next 2 days. Houston is about a 3 hour trip but fortunately I have a stepdaughter who lives in Houston and we also have a 5th wheel RV that we can move to the area if necessary. I am thankful for my bone scan results and that my urologist's opinion is that the cancer is contained in the prostate even thought it is considered aggressive. I know we probably won't know until after surgery. I know it is early but from all the info I have read it is my thoughts to get it removed and then think about any necessary follow on treatment. As for football I root for the Tigers but deep down my blood bleeds Burnt Orange, as I am a native Texan.
I am Richard Age 68 with a history of BPH but negative biopsy 97 & 00. Annual exam 11/07 PSA rose 4.9_and given antibiotics but PSA continued to rise (7.7) so a third biopsy was done 1/10/08 which came back positive 1/16/08 with high grade PCa with a Gleason score of 10. Bone scan on 1/17/08 indicates no bone involvement but rib and pelvic ex-rays on 1/21/08 to add to the information. I have old injuries and bad arthritis with one total knee replacement and needing the other knee and hip replaced. I live in rural Louisiana along Toledo Bend Lake and my urologist is Dr Kwok in DeRidder, LA. I have been self referred to M.D. Anderson in Houston and I am waiting for them to contact me for my first appointment. I am learning how the mind can play with your thoughts. One of my big concerns is my wife who is much younger than I. She lost her previous husband to kidney cancer in 1999 and now having to deal with something like this again. I found the healingwell.com site and know this site is a blessing as one can definitely see that PCa is not an automatic death sentence and can if one let's it, prepare for the fight to beat this disease. I plan on being one of the survivors. I have been told I will hear from MD Anderson in the next 2 days. Houston is about a 3 hour trip but fortunately I have a stepdaughter who lives in Houston and we also have a 5th wheel RV that we can move to the area if necessary. I am thankful for my bone scan results and that my urologist's opinion is that the cancer is contained in the prostate even thought it is considered aggressive. I know we probably won't know until after surgery. I know it is early but from all the info I have read it is my thoughts to get it removed and then think about any necessary follow on treatment. As for football I root for the Tigers but deep down my blood bleeds Burnt Orange, as I am a native Texan.
January 15, 2008
Today was the Day my Urologist called and bluntly told me that I had Aggressive Prostate Cancer and he wanted to have more test done.
Today was the Day my Urologist called and bluntly told me that I had Aggressive Prostate Cancer and he wanted to have more test done.
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