It is now 7:45 PM, Sunday, June 20th. Two days post op.
I am feeling MUCH better, although still tired. I have also been able to start cutting back on the narcotics to what they should be. I'm guessing that it may take awhile for the effects of the narcotics to start to wear off.
It is still a little tender around the incision area, but I can now get up out of bed, off the couch, etc., without much pain at all. Friday night it was impossible to even get in or out of bed without help, and without extreme pain.
Today, I have taken the dog out for a short walk, took a shower and have had a couple of naps. I am guessing it will take another week or so for things to get back to "normal", whatever that is.
As for finding out if the beads are working or not, I will have to set up a time to start having follow-up tests with the doctors to determine that. In the meantime, I'm just working on getting over the surgery.
Sunday, June 20, 2010
Friday, June 18, 2010
Pain still pretty bad
Well, it is 11pm, just less then 12 hours since my surgery. We are thankful that it was successful and that they were able to insert all the beads they needed to.
However, the pain from the incision area has been excruciating. I have been taking narcotics pretty regularly to try and get on top of the pain, and only by taking more than is prescriped is it beginning to work.
I have a feeling I have a long restless night ahead of me.
Please keep me in your prayers, that this pain will quickly subside.
Thank you.
Kevin
- Posted using BlogPress from my iPhone
However, the pain from the incision area has been excruciating. I have been taking narcotics pretty regularly to try and get on top of the pain, and only by taking more than is prescriped is it beginning to work.
I have a feeling I have a long restless night ahead of me.
Please keep me in your prayers, that this pain will quickly subside.
Thank you.
Kevin
- Posted using BlogPress from my iPhone
Surgery went well
Kev's surgery was succesful with no complications. Some more info on
the blog.
the blog.
Roni
-----------
Sent from my iPhone.
Surgery went well
Roni here
The doctor just came out to inform me that the procedure went well. They were able to insert all the macrobeads. They has to break through some filmy adhesions, but then were able to open up a nice large pocket for the beads to do their thing.
Kev's still waking up in recovery, and i havent seen him yet. He will be discharged today and well go back across the street to the guest quarters where we will spend the night. The doc will come by in the morning to see him before we head home.
Kev or I will post later to report on how the recovery is going.
Thanks for all the prayers and notes of encouragement. Now praying that these beads will cause the cancer to stop growing and even shrink existing tumors.
Special thanks to our friend Scott who lives a few blocks from the hospital and came to be with us. It was good having the company.
The doctor just came out to inform me that the procedure went well. They were able to insert all the macrobeads. They has to break through some filmy adhesions, but then were able to open up a nice large pocket for the beads to do their thing.
Kev's still waking up in recovery, and i havent seen him yet. He will be discharged today and well go back across the street to the guest quarters where we will spend the night. The doc will come by in the morning to see him before we head home.
Kev or I will post later to report on how the recovery is going.
Thanks for all the prayers and notes of encouragement. Now praying that these beads will cause the cancer to stop growing and even shrink existing tumors.
Special thanks to our friend Scott who lives a few blocks from the hospital and came to be with us. It was good having the company.
Thursday, June 17, 2010
Surgery is Scheduled
I arrived at the Helmsley Medical Tower Guest Suites at about 5:45 this evening. Even though the hospital is only a few miles from where we live, I guess they want to make sure we arrive in time, so the Rogosin Institute is putting us up just a couple of blocks away.
Tonight, Roni and I will go out for a nice dinner, and maybe a cigar and drinks, before our big day tomorrow.
Tomorrow (Friday, June 18), I have to be at the hospital at 8AM, and surgery will be at 9:30 AM. As long as everything goes according to plan, the surgery should take an hour or less. Roni or I will post after the surgery to let you know how it went.
While I am nervous about another surgery, I am more nervous about the possibility that there may not be enough room in the abdomen for all of the macrobeads they need to install. If there is not enough room, which they won't know until the surgery, they may say that I am not a candidate for the trial, which means the only options I have are to do nothing, or chemo.
Please pray that there is enough room for the beads, and that they are effective.
As always, thank you all for your prayers.
Kevin
Tonight, Roni and I will go out for a nice dinner, and maybe a cigar and drinks, before our big day tomorrow.
Tomorrow (Friday, June 18), I have to be at the hospital at 8AM, and surgery will be at 9:30 AM. As long as everything goes according to plan, the surgery should take an hour or less. Roni or I will post after the surgery to let you know how it went.
While I am nervous about another surgery, I am more nervous about the possibility that there may not be enough room in the abdomen for all of the macrobeads they need to install. If there is not enough room, which they won't know until the surgery, they may say that I am not a candidate for the trial, which means the only options I have are to do nothing, or chemo.
Please pray that there is enough room for the beads, and that they are effective.
As always, thank you all for your prayers.
Kevin
Tuesday, June 08, 2010
Pain Control, Macrobeads & Sleep
PAIN CONTROL
Monday afternoon I met with a pain specialist to try to figure out what is causing the pain, and what we can do about it. According to the PET/CT scan I had, there is tumor growing near the kidneys, and he believes this is what is causing the pain. Unfortunately, the only thing that will make the pain go away permanently is for the tumor to shrink and/or disappear.
For now, the only way to treat it, is with narcotics. Yippee.
I take oxycontin twice a day for long term pain relief, and take dilaudid for "break through" pain, i.e. when the oxycontin wears off, but it is still too soon to take another dose.
The doctor said the first thing is to get the pain under control, then we will work on getting to the point where the narcotics are not having the "narcotic" effect on me. I hope it is soon because I really don't like the feeling of being on these drugs. I am tired of being either in pain, or doped up on narcotics. My quality of life has taken a big hit as it is hard to know how I will be feeling, and therefore hard to make plans for anything social. I would love to be able to plan on seeing a movie, spending time with friends, or going on a date with my wife, but with my current situation, I just can't do that. The pain and drugs has also made it impossible for me to even go for a ride on the Harley.
MACROBEADS
Wednesday, I saw the surgeon who will be doing the macrobead insertions. He is concerned that there may not be enough room, due to scar tissue from previous surgeries, for all of the beads that need to be inserted, but won't know for sure until he does the surgery. So we go ahead with the surgery, which will be June 18th. 6 days before my 51st birthday.
SLEEP
Besides the pain, another problem I have had was getting a full nights sleep. When I went to bed, I would take an Ambien and a pain med, which helps me get to sleep, but then after about 4 - 5 hours, I would wake up in pain, and have to get up to take another pain med. I would be up for an hour or so before being able to get back to sleep. This means that I was usually exhausted all day long. So along with the increased doses for pain meds, the "pain" doctor also gave me a prescription for Ambien CR and for the first time in a LONG time, I have been able o get a full nights sleep. Even though I am still sleepy throughout the day, at least now I have a bit more energy to get things done.
Right now, one of my biggest fears is that this will be my life going forward. Either in pain, or on pain meds. We continue to pray that this will change. We pray for either for a miracle, or that the beads will be effective and help give me my quality of life back. We know that there are many others praying for the same thing, and we appreciate all of those prayers.
Monday afternoon I met with a pain specialist to try to figure out what is causing the pain, and what we can do about it. According to the PET/CT scan I had, there is tumor growing near the kidneys, and he believes this is what is causing the pain. Unfortunately, the only thing that will make the pain go away permanently is for the tumor to shrink and/or disappear.
For now, the only way to treat it, is with narcotics. Yippee.
I take oxycontin twice a day for long term pain relief, and take dilaudid for "break through" pain, i.e. when the oxycontin wears off, but it is still too soon to take another dose.
The doctor said the first thing is to get the pain under control, then we will work on getting to the point where the narcotics are not having the "narcotic" effect on me. I hope it is soon because I really don't like the feeling of being on these drugs. I am tired of being either in pain, or doped up on narcotics. My quality of life has taken a big hit as it is hard to know how I will be feeling, and therefore hard to make plans for anything social. I would love to be able to plan on seeing a movie, spending time with friends, or going on a date with my wife, but with my current situation, I just can't do that. The pain and drugs has also made it impossible for me to even go for a ride on the Harley.
MACROBEADS
Wednesday, I saw the surgeon who will be doing the macrobead insertions. He is concerned that there may not be enough room, due to scar tissue from previous surgeries, for all of the beads that need to be inserted, but won't know for sure until he does the surgery. So we go ahead with the surgery, which will be June 18th. 6 days before my 51st birthday.
SLEEP
Besides the pain, another problem I have had was getting a full nights sleep. When I went to bed, I would take an Ambien and a pain med, which helps me get to sleep, but then after about 4 - 5 hours, I would wake up in pain, and have to get up to take another pain med. I would be up for an hour or so before being able to get back to sleep. This means that I was usually exhausted all day long. So along with the increased doses for pain meds, the "pain" doctor also gave me a prescription for Ambien CR and for the first time in a LONG time, I have been able o get a full nights sleep. Even though I am still sleepy throughout the day, at least now I have a bit more energy to get things done.
Right now, one of my biggest fears is that this will be my life going forward. Either in pain, or on pain meds. We continue to pray that this will change. We pray for either for a miracle, or that the beads will be effective and help give me my quality of life back. We know that there are many others praying for the same thing, and we appreciate all of those prayers.
Wednesday, June 02, 2010
Australia - Part 3
From Airlie Beach, we headed north towards Townsville, then headed west to Charters Towers.
Charters Towers is the first place we lived when we moved to Australia in 1973.
The first night we were there, we had a mini reunion with some of my class mates from Charters Towers State High School. It was great seeing some of the guys I used to hang out with, and one (Terry Wise), even brought a picture of him and me taken about 35 years ago. The evening was organized by Debbie Bray, who was in the same grade as me, but in a different class, and Geoff Winstanley, who I used to work with at Aridas after school taking out the trash and cleaning the windows.
The first full day we were in Charters Towers we visited our old house, which was really WAY TOO small for a family of five. Walked down main street (Gill Street), which only took about 15 minutes or so, and seeing the church my dad pastored, which is now an architect business. We also saw Tania Marie Ault, who is an Aborigine artist. She presented us with the painting, "Freedom of Spirit" which I mentioned in an earlier post. That evening we had tea (dinner) with John and Robyn Lingard, old friends from when we used to live there.
Another highlight of that part of the trip is showing Roni where we used to go swimming and camping on the Burdekin River, which now has a sign warning about crocs. I was surprised to see that because we never had crocs back in the 70s.
It was a good time seeing the old outback town, and meeting old friends again.
Charters Towers is the first place we lived when we moved to Australia in 1973.
The first night we were there, we had a mini reunion with some of my class mates from Charters Towers State High School. It was great seeing some of the guys I used to hang out with, and one (Terry Wise), even brought a picture of him and me taken about 35 years ago. The evening was organized by Debbie Bray, who was in the same grade as me, but in a different class, and Geoff Winstanley, who I used to work with at Aridas after school taking out the trash and cleaning the windows.
The first full day we were in Charters Towers we visited our old house, which was really WAY TOO small for a family of five. Walked down main street (Gill Street), which only took about 15 minutes or so, and seeing the church my dad pastored, which is now an architect business. We also saw Tania Marie Ault, who is an Aborigine artist. She presented us with the painting, "Freedom of Spirit" which I mentioned in an earlier post. That evening we had tea (dinner) with John and Robyn Lingard, old friends from when we used to live there.
Another highlight of that part of the trip is showing Roni where we used to go swimming and camping on the Burdekin River, which now has a sign warning about crocs. I was surprised to see that because we never had crocs back in the 70s.
It was a good time seeing the old outback town, and meeting old friends again.
Australia - Part 2
We left Adrian & Margaret near Rockhampton, and from there we drove to Airlie Beach, near the Whitsunday Islands.
Along the way, we stopped at a small town called Marlboro for Aussie burgers and Sarsparilla. I had told Roni how Australians made hamburgers, but we had not had a chance to try one until then. Some of the differences is that they put cucumber and beetroots and carmalized onions on their burgers. I was never crazy about the beets, but Roni loved them. We also had Sarsparilla, one of my favourite drinks when I lived there.
One day at Airlie Beach, we took a boat tour out to sea part of the Great Barrier Reef and the Whitsunday Islands. I had never seen them before, so it was a new adventure for me as well. The Whitsunday Islands are a national preserve, so most of the beaches and islands are uninhabited. Roni got to do some snorkeling while I took the opportunity to relax on the boat.
The second day we were there, our trip to the outer reef was cancelled so we took the opportunity to relax and see some of the town.
From our lodging, we saw Cockatoos flyinf around in the wild. From there, we headed to Charters Towers.
Along the way, we stopped at a small town called Marlboro for Aussie burgers and Sarsparilla. I had told Roni how Australians made hamburgers, but we had not had a chance to try one until then. Some of the differences is that they put cucumber and beetroots and carmalized onions on their burgers. I was never crazy about the beets, but Roni loved them. We also had Sarsparilla, one of my favourite drinks when I lived there.
One day at Airlie Beach, we took a boat tour out to sea part of the Great Barrier Reef and the Whitsunday Islands. I had never seen them before, so it was a new adventure for me as well. The Whitsunday Islands are a national preserve, so most of the beaches and islands are uninhabited. Roni got to do some snorkeling while I took the opportunity to relax on the boat.
The second day we were there, our trip to the outer reef was cancelled so we took the opportunity to relax and see some of the town.
From our lodging, we saw Cockatoos flyinf around in the wild. From there, we headed to Charters Towers.
Australia - Part 1
As you may know, last month, Roni and I spent two weeks in Australia. I used to live there from 1973 to 1978, and spent my entire high school years there.
We arrived in Brisbane, where we met and spent the first 5 days with Adrian and Margaret. Adrian was my best friend in Margate. As a matter of fact, one of the reasons I did so poorly in grade 12 is because Adrian and I would often leave school after lunch and go hang out at his house, or down by the beach. For my parents sake, I am saying that it was always Adrian's idea (sorry Adrian.) :-)
One of the amazing things is that after 30-some years, when we met again, it was like we had continued to be mates the entire time, and I remembered why I always liked hanging out with him. Adrian and Margaret showed us a great time and were fantastic tour guides. Even though Roni had never met them before, all four of us got along so well it was as if we knew each other our entire lives. We are hoping that someday soon they will come visit us in New York so we can show them American hospitality.
Some of the highlights of hanging with Adrian & Margaret is visiting the Australia Zoo, started by Steve (Crikey!) Irwin. Seeing the Glass House Mountains. Camping at Borumba Dam. Driving along deserted beaches for miles and miles. And I mean literally driving ON the beach! And getting together with friends from high school and the church we used to go when we lived there in the mid 70s. We also had meat pies and introduced Roni to Tim Tams, Lamingtons and ANZAC biscuits.
Thank you Adrian and Margaret for making our trip even more special.
We arrived in Brisbane, where we met and spent the first 5 days with Adrian and Margaret. Adrian was my best friend in Margate. As a matter of fact, one of the reasons I did so poorly in grade 12 is because Adrian and I would often leave school after lunch and go hang out at his house, or down by the beach. For my parents sake, I am saying that it was always Adrian's idea (sorry Adrian.) :-)
One of the amazing things is that after 30-some years, when we met again, it was like we had continued to be mates the entire time, and I remembered why I always liked hanging out with him. Adrian and Margaret showed us a great time and were fantastic tour guides. Even though Roni had never met them before, all four of us got along so well it was as if we knew each other our entire lives. We are hoping that someday soon they will come visit us in New York so we can show them American hospitality.
Some of the highlights of hanging with Adrian & Margaret is visiting the Australia Zoo, started by Steve (Crikey!) Irwin. Seeing the Glass House Mountains. Camping at Borumba Dam. Driving along deserted beaches for miles and miles. And I mean literally driving ON the beach! And getting together with friends from high school and the church we used to go when we lived there in the mid 70s. We also had meat pies and introduced Roni to Tim Tams, Lamingtons and ANZAC biscuits.
Thank you Adrian and Margaret for making our trip even more special.
Clinical Trial Consult Went Well
Roni and I met with Dr. Smith, who is running the clinical trial here in NYC. He said that after looking over all of my test results, everything looks good for proceeding with the macrobeads. All of my tests came back fine. The CEA did go up again, but that's not surprising as we do know there is still tumor, and it is still growing.
The only bad news, which isn't really "bad", is that I will not be able to have the macrobead surgery this Friday. We were hoping I would be able to have it, to get it over and done with, but the surgeon is not available this week, and the OR is not available next. So surgery is now planned for Friday, June 18th.
Since we live in the Bronx, they will want us to stay in the Helmsley Towers, near the hospital, the night before the surgery, because the surgery is done early in the morning. They said they will also want us to stay the night after "just in case". The good news here is that all of that is paid for by the clinical trial. No out of pocket expenses for us at all.
Physically, I am doing OK, but I still have this pain in my left ribs. It seems to be getitng worse. The pain seems to begin in the left ribs, but it radiates out to my lower back, left arm, shoulder, etc. The PET/CT scan showed some tumor in that area, near the kidneys, so we are assuming that is what is causing the pain. The docs have prescribed Oxycontin and Oxycodone (Percocet) to help with the pain. The Oxycontin is supposed to last 12 hours, but it only lasts half that, if I'm lucky. The Oxycodone helps take up the slack of the Oxycontin, but after a few hours, that wears off too. So now it seems I am either in pain, or knocked out with narcotics. I am seeing a doctor who specializes in dealing with pain on Monday, June 7th, so I am hoping he can get to the bottom of this, help alleviate the pain, and do it without me being doped up on drugs.
Other doctor appointments I have coming up is one with the doctor who did the radiation in Jan/Feb of this year. I see him tomorrow morning, at which time I will let him know the radiation did no good whatsoever. And next Wednesday, I meet with the surgeon who will be doing the macrobeads insertion. It seems like my life revolves around medical tests and doctors. I guess being part of a clinical trial, I better get used to that.
Well, that's the medical news for now. As things progress, we'll keep you updated.
Kevin
The only bad news, which isn't really "bad", is that I will not be able to have the macrobead surgery this Friday. We were hoping I would be able to have it, to get it over and done with, but the surgeon is not available this week, and the OR is not available next. So surgery is now planned for Friday, June 18th.
Since we live in the Bronx, they will want us to stay in the Helmsley Towers, near the hospital, the night before the surgery, because the surgery is done early in the morning. They said they will also want us to stay the night after "just in case". The good news here is that all of that is paid for by the clinical trial. No out of pocket expenses for us at all.
Physically, I am doing OK, but I still have this pain in my left ribs. It seems to be getitng worse. The pain seems to begin in the left ribs, but it radiates out to my lower back, left arm, shoulder, etc. The PET/CT scan showed some tumor in that area, near the kidneys, so we are assuming that is what is causing the pain. The docs have prescribed Oxycontin and Oxycodone (Percocet) to help with the pain. The Oxycontin is supposed to last 12 hours, but it only lasts half that, if I'm lucky. The Oxycodone helps take up the slack of the Oxycontin, but after a few hours, that wears off too. So now it seems I am either in pain, or knocked out with narcotics. I am seeing a doctor who specializes in dealing with pain on Monday, June 7th, so I am hoping he can get to the bottom of this, help alleviate the pain, and do it without me being doped up on drugs.
Other doctor appointments I have coming up is one with the doctor who did the radiation in Jan/Feb of this year. I see him tomorrow morning, at which time I will let him know the radiation did no good whatsoever. And next Wednesday, I meet with the surgeon who will be doing the macrobeads insertion. It seems like my life revolves around medical tests and doctors. I guess being part of a clinical trial, I better get used to that.
Well, that's the medical news for now. As things progress, we'll keep you updated.
Kevin
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