I knew that sitting around this rented house for more then 3 weeks would be tough and it is. It is hard mentally and physically. In my last post, I spoke of my 2 physical complications. Fortunately for me, one of these has straighten itself out. The swelling of my genital area has now returned to normal. For that I am very thankful. As for my diarrhea, it continues to be a pain in my ass. It appears that my antibiotic - cipro - is the cause. This once a day drug kills all bad and good bacteria and never allows my intestines to properly process food. I have tried many things and nothing seems to work well. I am now adding bacteria to my system with a probiotic pill and supplementing in some anti-diarrhea pills. Of course the doctors say it would be worse to have constipation, so I try to walk the line. Unfortunately, the end of this is not coming soon, because I have enough pills to last till 9/28/15. But this situation keeps me close to home where I am more comfortable.
I am just trying to stay focused on what I have coming up. My appointment to get my cath out is on the 16th at 8:30 am. Just 4 days left out of this 3 week cathing period and I am so ready to move on. I will be there for about 3 hours learning how my new system works. I am apprehensive about this. But I am motivated to get past this so I can move on. I am hopeful that my body will function as close to normal as possible. I do have to remember that it may take time and I have to try and be patient. I am not typically patient, so this will be a challenge for me. I know if I can learn to adapt quickly and I have no complications, I will be ready to hop on that plane and fly home. And I am so ready to be home.
I am planning to fly out on the 20th. I believe that is enough time for me to adjust and prepare for the trip home. To be honest, I am more worried about the diarrhea then I am about my new bladder. I am just ready to be in my own home. Only time will tell if coming to USC / Keck was the right decision. The extra time, expense, and stress of making this trip was no small matter. But in all honesty, the experience has been positive. The medical personnel have been great to work with. The rental house looked better in the pictures then in reality. But it did meet our needs. Bottom line - I'm ready to have all of this over with.
Saturday, September 12, 2015
Monday, September 7, 2015
Here in California
It is now 10 days since my operation. Not counting the day of surgery, I spent 4 days in the hospital and was discharged on Sunday, Aug. 30. My hospital stay was interesting. The hospital staff was (for the most part) friendly and attentive. And with LA as a whole, the hospital staff was very diverse. I also found it interesting the differences of how USC / Keck hospital and it's clinics are run compared to our smaller Utah facilities. The vast number and diversity of people in the waiting areas, the use of hallways for extra space, and lack of free parking were eye opening in this big LA system. Anyway, we have managed to success full navigate this jungle. And I don't even want to get into the traffic / freeway system.
As for the medical / procedure stuff, there was a lot more to the home care then I was expecting. I don't think just one care giver would have been enough at the beginning. First there are pills that need to be taken at certain times, then a shot that has to be given, then the big one - every 4 hrs. the catheter has to be flushed, then each night my port has flushed and cleared for IV water treatments every other day. I know this doesn't seem like much, but if you have never done anything like this before, it is scary.
Flushing the catheter is the most involved. Because the neo bladder, which is made from 2 ft of my small intestine, produces mucus, it is important to not let this mucus accumulate in the new bladder. To prevent this, we inject 50 ml of saline solution up through the catheter with a syringe and into the neo bladder. We then pull back on the syringe to suck back out the water with along any mucus that the neo bladder has made. This process usually requires a minimum of 4 attempts. The waste is squirted into a pan and disposed of. Unfortunately, it doesn't always go smooth and the syringe does not cooperate. Sometimes a suction is created and you can not suck any fluid back out. So you need to move or adjust the catheter till you are clear. Not easy if you have never done this before and it needs to be done every 4 hours. But I am very lucky to have 2 terrific caregivers (Barb and Cheryl) who are helping navigate this territory.
To be honest I have been doing well since I have left the hospital. Where the cut through my abdomen is healing and is strong. But I have been struggling with some other issues that make each day a challenge. They said the 2 most frequent complications are dehydration and constipation. Neither of those has occurred. The irony is that the opposite has occurred. I have had diarrhea pretty much since I have left the hospital. They were giving me a stool softener to counter act the pain pill. But I soon found that wasn't needed. Now I am on a BRAT diet to try and firm things up. But this diarrhea has me tied to the house and with a lack of energy. It is frustrating.
And now for the more amusing complication. I hope you can read this with a sense of humor, although it is truly uncomfortable for me. While in the hospital I noticed my genital area becoming enlarged or swelling. I asked the doctor and was told this is normal. On Monday, our 1st full day at the house, I received my 1st IV hydration. At bedtime that evening Barb, Cheryl, and I prepped for my bedtime catheter / bladder flushing. When my shorts were removed , we all gasped at the size that my genitals had become. My scrotum was now larger then a softball. My penis had swollen so large that it was barely recognizable. Of course, after the initial freak and shock, the humor and jokes started coming. I called it my medical freak show. Of course the doctors said it was normal. They also said it might take 6 weeks for the swelling to go down. Basically, the fluids in my abdomen and body need to adjust from the surgery - or so they say. There isn't much that can be done to speed it up either. So I waddle bowlegged through the house being careful when sitting. So in my recent facebook post, when I referenced AC / DC, I was referring to their song "Big Balls".
It is now Labor Day, as I am trying to finish this post for 3-4 days. One would think I have all kinds of time to do whatever I like, but to be honest I have spent a lot of time just lying in bed. I have been walking about 1 mile total each day and I hope to keep increasing. I try to keep my nutrition up with my toast and rice diet by drinking Boost. I miss a nice grilled cheese burger. But I am now half way through the process and hopefully soon on a airplane home and this behind me. Although Barb has left to head home, she was a great help and support to me while she was here. I am so thankful that Cheryl continues to help me. I know the sacrifice that both Tim and she are making on my behalf, and I am so grateful. Thank you again for all your prayers and support.
As for the medical / procedure stuff, there was a lot more to the home care then I was expecting. I don't think just one care giver would have been enough at the beginning. First there are pills that need to be taken at certain times, then a shot that has to be given, then the big one - every 4 hrs. the catheter has to be flushed, then each night my port has flushed and cleared for IV water treatments every other day. I know this doesn't seem like much, but if you have never done anything like this before, it is scary.
Flushing the catheter is the most involved. Because the neo bladder, which is made from 2 ft of my small intestine, produces mucus, it is important to not let this mucus accumulate in the new bladder. To prevent this, we inject 50 ml of saline solution up through the catheter with a syringe and into the neo bladder. We then pull back on the syringe to suck back out the water with along any mucus that the neo bladder has made. This process usually requires a minimum of 4 attempts. The waste is squirted into a pan and disposed of. Unfortunately, it doesn't always go smooth and the syringe does not cooperate. Sometimes a suction is created and you can not suck any fluid back out. So you need to move or adjust the catheter till you are clear. Not easy if you have never done this before and it needs to be done every 4 hours. But I am very lucky to have 2 terrific caregivers (Barb and Cheryl) who are helping navigate this territory.
To be honest I have been doing well since I have left the hospital. Where the cut through my abdomen is healing and is strong. But I have been struggling with some other issues that make each day a challenge. They said the 2 most frequent complications are dehydration and constipation. Neither of those has occurred. The irony is that the opposite has occurred. I have had diarrhea pretty much since I have left the hospital. They were giving me a stool softener to counter act the pain pill. But I soon found that wasn't needed. Now I am on a BRAT diet to try and firm things up. But this diarrhea has me tied to the house and with a lack of energy. It is frustrating.
And now for the more amusing complication. I hope you can read this with a sense of humor, although it is truly uncomfortable for me. While in the hospital I noticed my genital area becoming enlarged or swelling. I asked the doctor and was told this is normal. On Monday, our 1st full day at the house, I received my 1st IV hydration. At bedtime that evening Barb, Cheryl, and I prepped for my bedtime catheter / bladder flushing. When my shorts were removed , we all gasped at the size that my genitals had become. My scrotum was now larger then a softball. My penis had swollen so large that it was barely recognizable. Of course, after the initial freak and shock, the humor and jokes started coming. I called it my medical freak show. Of course the doctors said it was normal. They also said it might take 6 weeks for the swelling to go down. Basically, the fluids in my abdomen and body need to adjust from the surgery - or so they say. There isn't much that can be done to speed it up either. So I waddle bowlegged through the house being careful when sitting. So in my recent facebook post, when I referenced AC / DC, I was referring to their song "Big Balls".
It is now Labor Day, as I am trying to finish this post for 3-4 days. One would think I have all kinds of time to do whatever I like, but to be honest I have spent a lot of time just lying in bed. I have been walking about 1 mile total each day and I hope to keep increasing. I try to keep my nutrition up with my toast and rice diet by drinking Boost. I miss a nice grilled cheese burger. But I am now half way through the process and hopefully soon on a airplane home and this behind me. Although Barb has left to head home, she was a great help and support to me while she was here. I am so thankful that Cheryl continues to help me. I know the sacrifice that both Tim and she are making on my behalf, and I am so grateful. Thank you again for all your prayers and support.
Tuesday, August 11, 2015
Plans made - Here I go
I have finally forced myself to sit down and catch up on what has happened. I think the reason why I have not wrote in my blog to much lately is that it forces me to sit down and think about what is going on. And I have had to make many decisions (some difficult) and I feel like I just don't want to think about this anymore.
I have decided to have my operation done at USC / Keck in California. In my mind, I just couldn't let the opportunity to have one of the most experienced neo bladder surgeons in the nation perform my surgery. So Dr. Daneshmand is the man. I know the logistics and cost become more complicated, but frankly I am worth it and I am stubborn and determined enough to make it happen.
So I left on vacation on August 4th. We were having a kind of family reunion back in my hometown of Toledo. I also had to inform the doctors of my decision. And then the ramifications of my decision began. Several pages of pre op paper work to be filled out for Keck. A page of pre op blood and other test that need to be done. Finding a place to stay for a month. Purchasing flexible airline tickets. So my vacation became kind of a working vacation.
Yesterday, I finally got my sister Cheryl's airline tickets done. We have decided to fly into Burbank and avoid LAX. I think this will be simpler and is closer to our rented house in Van Neys. Our house is a nice 3 bedroom house with a pool. It is located on a large lot in a secluded, quiet neighborhood. Shopping is located 4 blocks away and is walkable. The house is about 20 miles from the hospital, which could be an hour drive in LA traffic. But I have downloaded the Uber app on Barb and Cheryl's phone and explained how it works. I think it would be easier to get around this way then try and drive.
So here is my itinerary for now -
Aug. 12 - Back in Logan, UT
Aug. 13-14 - Get pre op tests done and port flushed at Logan hospital and get results faxed to Keck.
Aug. 15-22 - Work like hell to get ahead at the shop and at home. Tie up loose ends.
Aug. 23 - Pack for California.
Aug. 24 - Barb and I travel to LA
Aug. 25 - Barb and I spend day at Keck for pre op education
Aug. 26 - 5:00 AM - at Keck for surgery - BIG DAY
Aug. 26-30 - In hospital
Aug. 31-Sept. 16 - At home recovery with in home nursing
Sept. 16 - Hopefully back to hospital to have catheter and stents removed. Training on how I will urinate and self cath.
Sept 17-22 - Try out all my new equipment.
Sept. 22 - Hopefully fly home and pray I don't soak thru my diaper.
I haven't thought much beyond this point -
I hope this helps. I will continue to do my pelvic floor exercises and keep my physical strength up. I do need to work on my mental attitude. I have always been a realist and looked at all the things that can go wrong so I would be prepared for them. I feel I need to be more positive about the future. To be honest, there is still a part of me that is pissed off about this whole f@#&ing situation. But that part of me has been getting smaller. As I have said, I need to be more positive about the future. Picture how you want it and work to make it that way.
A quick thank you to my family. For their love, support, and prayers. For making this week truly special. Thank you, Linda and Jeff for opening your house up and making this all possible (and also all the fish).To Nick, John, and Darrell (my very special friends), I am so thankful that we were able to meet up again. To Dick and Jude, thanks again for your hospitality. You treat Barb, Dean, and I so well. And you treat me so well - so special - so thoughtful. Thank you all for a great vacation home in Toledo.
And lastly a special thank you to my sister Cheryl. You are so special.
Actually there are so many friends I am thankful for. But I am so very thankful for my family, Barb and Dean. They have been wonderful. This has been difficult for them and they have been there through it all. We are getting into the good stuff now and I will try to be strong.
I have decided to have my operation done at USC / Keck in California. In my mind, I just couldn't let the opportunity to have one of the most experienced neo bladder surgeons in the nation perform my surgery. So Dr. Daneshmand is the man. I know the logistics and cost become more complicated, but frankly I am worth it and I am stubborn and determined enough to make it happen.
So I left on vacation on August 4th. We were having a kind of family reunion back in my hometown of Toledo. I also had to inform the doctors of my decision. And then the ramifications of my decision began. Several pages of pre op paper work to be filled out for Keck. A page of pre op blood and other test that need to be done. Finding a place to stay for a month. Purchasing flexible airline tickets. So my vacation became kind of a working vacation.
Yesterday, I finally got my sister Cheryl's airline tickets done. We have decided to fly into Burbank and avoid LAX. I think this will be simpler and is closer to our rented house in Van Neys. Our house is a nice 3 bedroom house with a pool. It is located on a large lot in a secluded, quiet neighborhood. Shopping is located 4 blocks away and is walkable. The house is about 20 miles from the hospital, which could be an hour drive in LA traffic. But I have downloaded the Uber app on Barb and Cheryl's phone and explained how it works. I think it would be easier to get around this way then try and drive.
So here is my itinerary for now -
Aug. 12 - Back in Logan, UT
Aug. 13-14 - Get pre op tests done and port flushed at Logan hospital and get results faxed to Keck.
Aug. 15-22 - Work like hell to get ahead at the shop and at home. Tie up loose ends.
Aug. 23 - Pack for California.
Aug. 24 - Barb and I travel to LA
Aug. 25 - Barb and I spend day at Keck for pre op education
Aug. 26 - 5:00 AM - at Keck for surgery - BIG DAY
Aug. 26-30 - In hospital
Aug. 31-Sept. 16 - At home recovery with in home nursing
Sept. 16 - Hopefully back to hospital to have catheter and stents removed. Training on how I will urinate and self cath.
Sept 17-22 - Try out all my new equipment.
Sept. 22 - Hopefully fly home and pray I don't soak thru my diaper.
I haven't thought much beyond this point -
I hope this helps. I will continue to do my pelvic floor exercises and keep my physical strength up. I do need to work on my mental attitude. I have always been a realist and looked at all the things that can go wrong so I would be prepared for them. I feel I need to be more positive about the future. To be honest, there is still a part of me that is pissed off about this whole f@#&ing situation. But that part of me has been getting smaller. As I have said, I need to be more positive about the future. Picture how you want it and work to make it that way.
A quick thank you to my family. For their love, support, and prayers. For making this week truly special. Thank you, Linda and Jeff for opening your house up and making this all possible (and also all the fish).To Nick, John, and Darrell (my very special friends), I am so thankful that we were able to meet up again. To Dick and Jude, thanks again for your hospitality. You treat Barb, Dean, and I so well. And you treat me so well - so special - so thoughtful. Thank you all for a great vacation home in Toledo.
And lastly a special thank you to my sister Cheryl. You are so special.
Actually there are so many friends I am thankful for. But I am so very thankful for my family, Barb and Dean. They have been wonderful. This has been difficult for them and they have been there through it all. We are getting into the good stuff now and I will try to be strong.
Friday, July 31, 2015
Back From California
My trip to see Dr. Daneshman went well. It was a tiring day for sure, but I accomplished what I needed to. I talked to the nurse and P.A. first and answered all the same medical questions I've answered in the past. The PA had a hard time understanding why there was so much time between my first biopsy (which was inconclusive) and the second biopsy (which came back stage 2b cancer). I tried to explain, but finally said that I wonder the same.
When I finally met with Dr. Daneshman, I felt he seemed rushed. He was probably running behind. But to his credit, he stayed with me until all my questions were answered and discussions completed. He started by explaining his method of surgery and what I could expect. He told me that I would need to stay in the area for about 4 weeks if everything went well. My hospital stay would be 4 days average. He sighted various statistics and studies that they had did to help improve patient outcomes. He also stated that according to published figures, he had constructed more neo bladders last year then any other surgeon in the US. We talked about if the experience of the surgeon had a difference in the patient's outcome. Of course he thought it had a big difference.
The bottom line is do I feel comfortable with this Dr. doing my procedure? And the answer is yes. I felt he was competent, confident, and caring. We discussed at length my concerns about going back to Utah and having complications. We discussed Dr. Myers. He assured me that if I was unable to make it back to him that he would do all he could to consult with doctors in Utah. If I can get all the pieces together, I would be comfortable know I went to the most experienced doctor for this procedure that I could find.
Right now the biggest roadblock into getting my surgery done there is finding an affordable place to stay for a month or so. With my sister, Barb, and I, we would need 2 bedrooms. Hotels would run us over $9,000.00. I talked to the hospital concierge and she said that most out of town patients look for houses to rent. She slyly suggested that I would want to look in certain areas for a place to rent. Of course she is right, I don't think I would be comfortable in east LA. Anyway, I have started looking and there are house rentals that cost $9,000.00/ month. But there are some that are affordable.
Anyway, Monday is still my deadline for making this decision. Prayers appreciated. Good night.
When I finally met with Dr. Daneshman, I felt he seemed rushed. He was probably running behind. But to his credit, he stayed with me until all my questions were answered and discussions completed. He started by explaining his method of surgery and what I could expect. He told me that I would need to stay in the area for about 4 weeks if everything went well. My hospital stay would be 4 days average. He sighted various statistics and studies that they had did to help improve patient outcomes. He also stated that according to published figures, he had constructed more neo bladders last year then any other surgeon in the US. We talked about if the experience of the surgeon had a difference in the patient's outcome. Of course he thought it had a big difference.
The bottom line is do I feel comfortable with this Dr. doing my procedure? And the answer is yes. I felt he was competent, confident, and caring. We discussed at length my concerns about going back to Utah and having complications. We discussed Dr. Myers. He assured me that if I was unable to make it back to him that he would do all he could to consult with doctors in Utah. If I can get all the pieces together, I would be comfortable know I went to the most experienced doctor for this procedure that I could find.
Right now the biggest roadblock into getting my surgery done there is finding an affordable place to stay for a month or so. With my sister, Barb, and I, we would need 2 bedrooms. Hotels would run us over $9,000.00. I talked to the hospital concierge and she said that most out of town patients look for houses to rent. She slyly suggested that I would want to look in certain areas for a place to rent. Of course she is right, I don't think I would be comfortable in east LA. Anyway, I have started looking and there are house rentals that cost $9,000.00/ month. But there are some that are affordable.
Anyway, Monday is still my deadline for making this decision. Prayers appreciated. Good night.
Wednesday, July 29, 2015
Going to California
Finally, tomorrow morning I leave for L.A. to meet with Dr. Daneshmand. He is the surgeon that I learned about on the BCAN network. He is certainly a well known surgeon who has performed hundreds of neo bladder procedures. All of the comments on BCAN are positive and the people have had great results with little or no complications. Of course, that is what I am hoping for. So I am going to see this Doctor so I can talk to him and see what he is like. I have a list of questions for him and I hope he is honest and straight forward with his answers.
An amazing coincidence happened about a week ago. I'm sharing this because this makes going to USC / Keck more feasible. A few months ago while I was seeking information about Dr. Dechet and the Huntsman, someone wrote me about a lady on BCAN who now lives in AZ. who had her operation done at the Huntsman. She said I should try to get a hold of her. Of course I didn't know anything about her, so I didn't see how I could contact her. Well last Thursday, she responded to my Huntsman question. She told me her Indiana pouch was done by 2 doctors - Dr. Dechet and a Dr. Myers. I had never heard of Dr. Myers. He is not associated with the Huntsman Cancer Center. I searched and found he works out of the University of Utah medical college. He does reconstructive bladder surgery on accident victims. The point is that I have been afraid of going to USC / Keck for my surgery because once back in Utah, if I have a major problem - who has the skills here to work on me. Dr. Dechet, I do not feel would be willing to. I don't blame him. But if Dr. Myers has these skills, my problem may be solved. So I called his office on Monday and talked to his assistant who assured me that not only is he capable of performing these procedures, but he would be more then willing to help if complications arose. Let's just say that the conversation put my mind at ease that Dr. Myers would be a competent and caring doctor, if I decide to go to USC for the operation. Funny how things work out in the nick of time, thanks to a great lady in AZ.
Well, I promised that I would make up my mind on who and where I want to do my surgery by Monday. I feel this is going to be a difficult weekend. I have put this off long enough and it is beginning to wear on me. Who knows what the cancer has been doing in my bladder this whole time. They told me it is the aggressive type. But I am not looking forward to seeing my bladder go and getting some substitute. I'm scared, but I know what I have to do or there is 100% chance that I die - sooner rather then latter.
Prayers welcome - Good night.
An amazing coincidence happened about a week ago. I'm sharing this because this makes going to USC / Keck more feasible. A few months ago while I was seeking information about Dr. Dechet and the Huntsman, someone wrote me about a lady on BCAN who now lives in AZ. who had her operation done at the Huntsman. She said I should try to get a hold of her. Of course I didn't know anything about her, so I didn't see how I could contact her. Well last Thursday, she responded to my Huntsman question. She told me her Indiana pouch was done by 2 doctors - Dr. Dechet and a Dr. Myers. I had never heard of Dr. Myers. He is not associated with the Huntsman Cancer Center. I searched and found he works out of the University of Utah medical college. He does reconstructive bladder surgery on accident victims. The point is that I have been afraid of going to USC / Keck for my surgery because once back in Utah, if I have a major problem - who has the skills here to work on me. Dr. Dechet, I do not feel would be willing to. I don't blame him. But if Dr. Myers has these skills, my problem may be solved. So I called his office on Monday and talked to his assistant who assured me that not only is he capable of performing these procedures, but he would be more then willing to help if complications arose. Let's just say that the conversation put my mind at ease that Dr. Myers would be a competent and caring doctor, if I decide to go to USC for the operation. Funny how things work out in the nick of time, thanks to a great lady in AZ.
Well, I promised that I would make up my mind on who and where I want to do my surgery by Monday. I feel this is going to be a difficult weekend. I have put this off long enough and it is beginning to wear on me. Who knows what the cancer has been doing in my bladder this whole time. They told me it is the aggressive type. But I am not looking forward to seeing my bladder go and getting some substitute. I'm scared, but I know what I have to do or there is 100% chance that I die - sooner rather then latter.
Prayers welcome - Good night.
Tuesday, July 14, 2015
Stuff is happening
Well after my meeting with Dr. Dechet at the Huntsman on July 2, I had time to think about my situation over the holiday weekend. And I came to the decision that I wanted to explore seeing a Dr. Daneshmand at Keck / USC in California. Dr. Daneshmand performs RC w/ neobladder surgeries at a far higher rate then Dr. Dechet. While Dr. Dechet may perform 12 surgeries per year, I feel, Dr. Daneshmand will do over 10X that number. I realize that this does not make Dr. Dechet less skilled or qualified, but this goes to all the comments on BCAN saying find the most experienced surgeon. And I believe that Dr. Daneshmand is that surgeon.
So I spent all last week talking to Dr. Daneshmand's office and arranging schedules and questions concerning my insurance. Concerning my insurance, although Keck is out of network, I am covered and will only have to pay my max. out of network cost. Once that was settled, I was able to get an appointment on July 30. I still need to get all of my medical reports sent to Dr. Daneshmand. To be honest, I am not sure what to expect from this meeting. But I will have my questions ready to go. My biggest question is what happens when I get home from California and I have a complication? Who do I go to? There is no time to fly to California and I don't think the doctors at the Huntsman will take me back. I am not sure what the answers are.
On Monday, I made an appointment with a physical therapist who specializes in male pelvic floor muscle rehab. I was lucky to find one here in Logan. Do you know your Kegel exercises? Well that is part of the exercises that help strengthen the muscles of your pelvic floor. Why is this important? Because the muscles of my pelvic floor are what will help me control my neo bladder. They tell me that a strong pelvic floor will help prevent me from peeing my pants. So I want to build my pelvic floor muscles up before the surgery so I have more of a chance of keeping my Depends dry. And I am going to P.T., to make sure I am doing my exercises correctly and not over straining the muscles.
On Tuesday, I spoke with the Huntsman records department to get all my information shipped to Dr. Daneshmand's office. Colleen was very helpful and understanding. I am glad I did not have to call Dr. Dechet's office to get these files. So it looks like my appointment on the 30th is looking good.
It seems like there is so much to do to prepare for my surgery. Some things I can not talk about now. But by far, my biggest worry is do I want Dr. Dechet or Dr. Daneshmand to perform my surgery? I hope the 30th gets here soon so I can get some questions answered and make my decision. The question is how am I going to decide which doctor is going to operate on the rest of my life. This is by far the hardest decision I have ever had to make. I pray about it often.
Well, it's late now. I'm sorry I haven't wrote much lately. Sometimes I spend a lot of time thinking, but I don't feel like writing. The time for action is coming soon enough and I can't delay it. But for now I need to get my rest and build up my strength.
God's peace to you all - say a prayer for me. Good night
So I spent all last week talking to Dr. Daneshmand's office and arranging schedules and questions concerning my insurance. Concerning my insurance, although Keck is out of network, I am covered and will only have to pay my max. out of network cost. Once that was settled, I was able to get an appointment on July 30. I still need to get all of my medical reports sent to Dr. Daneshmand. To be honest, I am not sure what to expect from this meeting. But I will have my questions ready to go. My biggest question is what happens when I get home from California and I have a complication? Who do I go to? There is no time to fly to California and I don't think the doctors at the Huntsman will take me back. I am not sure what the answers are.
On Monday, I made an appointment with a physical therapist who specializes in male pelvic floor muscle rehab. I was lucky to find one here in Logan. Do you know your Kegel exercises? Well that is part of the exercises that help strengthen the muscles of your pelvic floor. Why is this important? Because the muscles of my pelvic floor are what will help me control my neo bladder. They tell me that a strong pelvic floor will help prevent me from peeing my pants. So I want to build my pelvic floor muscles up before the surgery so I have more of a chance of keeping my Depends dry. And I am going to P.T., to make sure I am doing my exercises correctly and not over straining the muscles.
On Tuesday, I spoke with the Huntsman records department to get all my information shipped to Dr. Daneshmand's office. Colleen was very helpful and understanding. I am glad I did not have to call Dr. Dechet's office to get these files. So it looks like my appointment on the 30th is looking good.
It seems like there is so much to do to prepare for my surgery. Some things I can not talk about now. But by far, my biggest worry is do I want Dr. Dechet or Dr. Daneshmand to perform my surgery? I hope the 30th gets here soon so I can get some questions answered and make my decision. The question is how am I going to decide which doctor is going to operate on the rest of my life. This is by far the hardest decision I have ever had to make. I pray about it often.
Well, it's late now. I'm sorry I haven't wrote much lately. Sometimes I spend a lot of time thinking, but I don't feel like writing. The time for action is coming soon enough and I can't delay it. But for now I need to get my rest and build up my strength.
God's peace to you all - say a prayer for me. Good night
Monday, July 6, 2015
Report Past Due
Hi Everyone -
Sorry for the delay in updating my situation. I have been working on some things I can report on later. But for now I will do my best to fill you in on my visit with Dr. Dechet on Thursday.
To be honest, it went much better then I had anticipated. I spent a lot of time with his intern and she spent a lot of time answering my questions. And then Dr. Dechet came in and he answered my questions and also talked to me about the surgery and other matters. First, my CT scan came back with good. There was no sign that the cancer has spread. That greatly enhances my chance of survival. He talked about the surgery and what to expect. He finally tried to answer my question concerning the number of neo bladders he has constructed. He admitted that because Utah is not a big cancer state, most of his bladder cancer patients are older and not candidates for neo bladders. He could only give me rough estimates. He said he maybe does 25-50 radical cystectomies and year. And that maybe 1/3 of those involve a neo bladder diversion. So based on his years at Huntsman, he may have done over 200 neo's. He admitted that although he is the most experienced in the intermountain west, there are doctors on the east and west coast who have done many more. We also discussed how long you could wait after chemo to have surgery before the cancer has a chance to progress. He said you should wait no longer then 3 months. I asked who is person who schedules the surgery and he said I am. I said the although I would like to put this off for several years, that I would set a date for my surgery today. He told me to talk with his assistant.
Overall, I must admit that I left our meeting much more confident about the abilities of Dr. Dechet to perform my surgery. And I think I would be comfortable to have my surgery done at the Huntsman. But I admit that I still have a voice in the back of my head that tells me that I should get a second opinion from one of the doctors of USC. So I have been spending my time getting information so I can travel there and accomplish all that needs to be done in a day. And I think that tomorrow I will be ready to call out there and try and make an appointment with Dr. Daneshmand. I realize that getting a more experienced surgeon does not guarantee a better outcome. And I realize going out of state adds more logistical problems to the procedure, but I feel I owe it to myself to get that 2nd opinion and to see how the cards play out.
In the mean time I will keep doing my kiegel exercises and getting my strength up for the surgery. Which for now is scheduled for Aug. 25 at the Huntsman. OH BOY!!!!!!
Wishing you the best - Good night.
Sorry for the delay in updating my situation. I have been working on some things I can report on later. But for now I will do my best to fill you in on my visit with Dr. Dechet on Thursday.
To be honest, it went much better then I had anticipated. I spent a lot of time with his intern and she spent a lot of time answering my questions. And then Dr. Dechet came in and he answered my questions and also talked to me about the surgery and other matters. First, my CT scan came back with good. There was no sign that the cancer has spread. That greatly enhances my chance of survival. He talked about the surgery and what to expect. He finally tried to answer my question concerning the number of neo bladders he has constructed. He admitted that because Utah is not a big cancer state, most of his bladder cancer patients are older and not candidates for neo bladders. He could only give me rough estimates. He said he maybe does 25-50 radical cystectomies and year. And that maybe 1/3 of those involve a neo bladder diversion. So based on his years at Huntsman, he may have done over 200 neo's. He admitted that although he is the most experienced in the intermountain west, there are doctors on the east and west coast who have done many more. We also discussed how long you could wait after chemo to have surgery before the cancer has a chance to progress. He said you should wait no longer then 3 months. I asked who is person who schedules the surgery and he said I am. I said the although I would like to put this off for several years, that I would set a date for my surgery today. He told me to talk with his assistant.
Overall, I must admit that I left our meeting much more confident about the abilities of Dr. Dechet to perform my surgery. And I think I would be comfortable to have my surgery done at the Huntsman. But I admit that I still have a voice in the back of my head that tells me that I should get a second opinion from one of the doctors of USC. So I have been spending my time getting information so I can travel there and accomplish all that needs to be done in a day. And I think that tomorrow I will be ready to call out there and try and make an appointment with Dr. Daneshmand. I realize that getting a more experienced surgeon does not guarantee a better outcome. And I realize going out of state adds more logistical problems to the procedure, but I feel I owe it to myself to get that 2nd opinion and to see how the cards play out.
In the mean time I will keep doing my kiegel exercises and getting my strength up for the surgery. Which for now is scheduled for Aug. 25 at the Huntsman. OH BOY!!!!!!
Wishing you the best - Good night.
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