Star date Sept. 16, 2015. I have now entered the true neo bladder zone. I am now 100% reliant on my intestinal made bladder for storing and evacuating all my urine.
So today I had the catheter removed that was making sure my neo bladder was emptying. Attached to the catheter were 2 stents. Each stent was inserted up through my ureters and into the kidneys. You have to love when Cindy, my neo bladder training nurse says, "When I remove this catheter and stents, it is going to hurt. Some people say it hurts a little. Some people say it hurts a lot. But I while try to remove it as quickly as possible." Well it did hurt. A burning pain. But it was over soon. Soon enough that I didn't have time to go into a swearing tirade.
Before the catheter was removed, Cindy irrigated or flushed my neo bladder to remove any mucus that they be present. Somehow she found a lot of mucus - not good. The last thing she did before removal was to inject 50 ml of saline into the bladder. Then the pain previously mentioned occurred. Cindy then had me step over and sit on the toilet to see if I could evacuate the saline on my own. And I could not. My urethra was clogged with mucus and would not let the fluid by. So this is where I received my first lesson in self catheterization and irrigation. This is the part that I was very much apprehensive - scared - about. But I put my big boy positive attitude on and pushed the catheter in with the help of lots of K-Y gel. To be honest there was no pain involved, but you could tell when you passed through the pelvic floor and into the neo bladder. Well the long and short of it is that it took 2 self caths to clear the mucus away. Unfortunately, Cindy did not leave any additional saline in the bladder, so I still had no idea if I could self evacuate the fluid in my bladder. Finally, I did get a chance to sit on the toilet again. I did as instructed, I pushed down as though I was trying to have a bowel movement and presto - a small shot of urine slowly flowed from my penis. I was so relieved and happy.
I saw Kevin, the P.A., and received some instruction on future appointments. We said our thank you and good bye to Cindy and Cheryl drove us home to Van Nuys - me and my new system complete with diaper.
Of course, my journey has just begun. I set an alarm for every 2 hours during the day and every 3 hours during the night as I begin my life of urinating by the clock. Eventually, as my neo bladder stretches, the intervals will increase. There are numerous procedures I must perform to keep me and my neo bladder functioning properly. But I'll save those for another time. Hopefully in time, I will find my new normal - my new life.
Wednesday, September 16, 2015
Saturday, September 12, 2015
Ready to move on
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.
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.
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.
Wednesday, July 1, 2015
Anxious
I am feeling anxious and a little scared. Tomorrow I have my appointment with Dr. Dechet. I'm not sure what to expect. I have my questions ready, but I wonder what kind of answers I will get. I know that the results of my CT scan I had on Monday should be available. I don't know if Dr. Dechet will want to schedule my surgery. If he does, I wonder how much information he will try and give me tomorrow. Thanks to the people on BCAN, I have learned a lot about the pre and post op procedures. I wonder if Dechet will follow the same procedures. I know it's silly to worry about things I can't control, but I am.
I have mentioned several times about situations that have not gone as I feel they should have at the Huntsman and my CT scan was no different. The doctors office had called on the 17th to give me the details of the scan and told me to show up 2 hrs. early to drink the contrast. I understood this because my 2 previous scans, I had to drink the contrast. Well on the 25th, the CT dept. called to verify the appointment and proceeded to tell me I didn't need to drink any contrast. I said that the doctor's office said I did need the contrast. They assured me I didn't. So that night, I email the ask a nurse and informed them of the conflict and asked if they could check on it and let me know tomorrow (Friday). And as usual, I did not get a response. So all weekend, I wondered what I should do. Luckily, my appointment was late on Monday so I had time to call the doctor's office and try and get an answer. I did get in touch with the office and they told me I needed the contrast and they would talk to the CT dept. I arrived early for my CT and was again told I didn't need contrast. After some discussion, I was given the contrast to drink. And I have to ask myself, HOW CAN THE COMMUNICATION BE SO POOR!!! When I talking directly to people, they are straight forward and nice. But this miscommunication and unreturned messages happens so much that I truly wonder if I should go out of state.
Going out of state is something I have considered from the very beginning. But I went to the Huntsman hoping they would show me they were the best place for me to be. But in my opinion, they have consistently shown me the opposite. Although the people have been great when I am there in person, the frustration I have received from unreturned messages and miscommunication has been great. so I finally investigated people on BCAN who went out of state. One from N.M. and one from Idaho ended up at USC cancer hospital. They both got first rate care and more importantly no complications from their surgery. I am so close to at least going and talking to the doctor. I will wait to see how my meeting goes tomorrow.
Good night.
I have mentioned several times about situations that have not gone as I feel they should have at the Huntsman and my CT scan was no different. The doctors office had called on the 17th to give me the details of the scan and told me to show up 2 hrs. early to drink the contrast. I understood this because my 2 previous scans, I had to drink the contrast. Well on the 25th, the CT dept. called to verify the appointment and proceeded to tell me I didn't need to drink any contrast. I said that the doctor's office said I did need the contrast. They assured me I didn't. So that night, I email the ask a nurse and informed them of the conflict and asked if they could check on it and let me know tomorrow (Friday). And as usual, I did not get a response. So all weekend, I wondered what I should do. Luckily, my appointment was late on Monday so I had time to call the doctor's office and try and get an answer. I did get in touch with the office and they told me I needed the contrast and they would talk to the CT dept. I arrived early for my CT and was again told I didn't need contrast. After some discussion, I was given the contrast to drink. And I have to ask myself, HOW CAN THE COMMUNICATION BE SO POOR!!! When I talking directly to people, they are straight forward and nice. But this miscommunication and unreturned messages happens so much that I truly wonder if I should go out of state.
Going out of state is something I have considered from the very beginning. But I went to the Huntsman hoping they would show me they were the best place for me to be. But in my opinion, they have consistently shown me the opposite. Although the people have been great when I am there in person, the frustration I have received from unreturned messages and miscommunication has been great. so I finally investigated people on BCAN who went out of state. One from N.M. and one from Idaho ended up at USC cancer hospital. They both got first rate care and more importantly no complications from their surgery. I am so close to at least going and talking to the doctor. I will wait to see how my meeting goes tomorrow.
Good night.
Tuesday, June 23, 2015
Getting back to it!!
Today was kind of special. Tuesday is my walking night. But today I changed it up a little. I stopped home after work and strapped on my heart rate monitor and put on shorts and my running shoes. I thought I might change my pace today. I got to Green Canyon and started to walk. But after a short distance, I decided to try and run. I was not sure how my body would take it. But it felt GOOD. Anyway, I went for 3 miles. The first half was up hill and the second down hill. Of course I was able to run the whole down hill section, but I did run at least half the up hill section. For me, this is a big deal. I am not an exercise Nazi, but I do like to try and stay fit. After my heart attack, I knew that I wanted to keep that muscle strong in case of another one my heart would fare as good as the first time - no dead tissue. So today was good.
In my last post, I mentioned that there was more to the story of the upcoming doctor's appointment on 7/2/15. Well the irony of the situation is that while I have been pushing to try and talk about the next step and moving forward, the doctor leaves on vacation for the whole month of July after he sees me on 7/2. So as far as my surgery goes with this doctor it appears that the soonest time would be August and more likely September. Not sure how I feel about this. Not sure how my cancer feels about this. It seems like this meeting on the 7/2 will be interesting. I wonder how much of his mind will be on my questions and concerns and how much will be on his vacation plans. It's times like this I need to remind myself to not worry about things I have no control over.
Well it's late and tonight I am tired. Thanks everyone for your prayers and support. The wheels do seem to move slow. Good night.
In my last post, I mentioned that there was more to the story of the upcoming doctor's appointment on 7/2/15. Well the irony of the situation is that while I have been pushing to try and talk about the next step and moving forward, the doctor leaves on vacation for the whole month of July after he sees me on 7/2. So as far as my surgery goes with this doctor it appears that the soonest time would be August and more likely September. Not sure how I feel about this. Not sure how my cancer feels about this. It seems like this meeting on the 7/2 will be interesting. I wonder how much of his mind will be on my questions and concerns and how much will be on his vacation plans. It's times like this I need to remind myself to not worry about things I have no control over.
Well it's late and tonight I am tired. Thanks everyone for your prayers and support. The wheels do seem to move slow. Good night.
Wednesday, June 17, 2015
Returning to normal
It has now been 2 weeks since I sat in a chair for 6 hours and let the chemo med drip into my veins. I had lost 15 lbs. from then till now. I can see it in my face. My hair and whiskers stopped growing, so I haven't shaved in 8 weeks or so.
But I have been getting stronger over this past week. My appetite has almost returned. But I still miss the feeling of being hungry for something. You know when you just have a craving for something. I don't have that - yet. But I do somewhat feel the sensation of hunger. I am working full days, 5 days a week. I do get tired. Bit as I said earlier, I am getting stronger each day.
I decided that I needed to start my exercise program back up. For me that means walking up Green Canyon after work. Not everyday, that would be to much. So Tuesday I decided to walk 2 or more miles. First half uphill - Second half down. So I am a mile up and decide I feel good enough to keep going and I start to climb gate hill. I get almost to the top and a truck approaches me going down. The truck reaches me, slows down, and then stops. The window rolls down and the driver looks at me and ask, "Do you need a ride or are you like walking?" I assured him that I was OK and was indeed walking. They gave me a thumbs up and continued on and I thought to myself how bad must I look that someone passing by thought "This guy does not look well. We better stop and ask if he needs help." I had to laugh to myself and then I thought how lucky I am to live in a place where strangers care enough to ask if you are OK. Tomorrow I walk again. Hopefully I'll look fit enough that people will think I belong up there.
On the medical side, I finally heard back from the doctor's office (Dr. Dechet) at the Huntsman. I have a CT scan scheduled for 6/29/15 and an appointment to see Dr. Dechet on 7/2/15. I have much more to say about this, but it is late and I am tired. When I have time and energy, I will tell you the irony of all of this. But for sure, the 7/2 meeting is going to be a big one.
One last thing before I say good night. I want to thank everyone who has been thinking of or praying for me. I still have trouble believing what has, is, and will be happening to me. It's "INCONCIEVABLE"! Ha. I don't feel sick. I don't feel cancer. My urinary system seems to be working better then it has in a long time. I don't understand - why me. But again - THANK YOU.
Good night.
But I have been getting stronger over this past week. My appetite has almost returned. But I still miss the feeling of being hungry for something. You know when you just have a craving for something. I don't have that - yet. But I do somewhat feel the sensation of hunger. I am working full days, 5 days a week. I do get tired. Bit as I said earlier, I am getting stronger each day.
I decided that I needed to start my exercise program back up. For me that means walking up Green Canyon after work. Not everyday, that would be to much. So Tuesday I decided to walk 2 or more miles. First half uphill - Second half down. So I am a mile up and decide I feel good enough to keep going and I start to climb gate hill. I get almost to the top and a truck approaches me going down. The truck reaches me, slows down, and then stops. The window rolls down and the driver looks at me and ask, "Do you need a ride or are you like walking?" I assured him that I was OK and was indeed walking. They gave me a thumbs up and continued on and I thought to myself how bad must I look that someone passing by thought "This guy does not look well. We better stop and ask if he needs help." I had to laugh to myself and then I thought how lucky I am to live in a place where strangers care enough to ask if you are OK. Tomorrow I walk again. Hopefully I'll look fit enough that people will think I belong up there.
On the medical side, I finally heard back from the doctor's office (Dr. Dechet) at the Huntsman. I have a CT scan scheduled for 6/29/15 and an appointment to see Dr. Dechet on 7/2/15. I have much more to say about this, but it is late and I am tired. When I have time and energy, I will tell you the irony of all of this. But for sure, the 7/2 meeting is going to be a big one.
One last thing before I say good night. I want to thank everyone who has been thinking of or praying for me. I still have trouble believing what has, is, and will be happening to me. It's "INCONCIEVABLE"! Ha. I don't feel sick. I don't feel cancer. My urinary system seems to be working better then it has in a long time. I don't understand - why me. But again - THANK YOU.
Good night.
Tuesday, June 9, 2015
Just Waiting
It's been about one week since the last chemo and I feel like shit. Actually, that might be to strong. I guess in the scheme of things, I could always feel worse. But I do feel my best at that moment when I first wake up (assuming I've had a restful sleep). I think to myself that this is the day where my batteries are fully charged. But then I get up, get ready, realize I still don't have an appetite, go up and down the stairs a few times, and I am tired and out of breathe. Then the rest of the day is spent managing the moving around and looking forward to a 2-3 hr. lunchtime nap.
Also, I wish I had an appetite. No food or drink ever sounds good. Don't know if I lost any weight. Don't own a scale. Although my belt buckle has moved up a notch or so. It seems like I am just waiting. Waiting for this to end. Waiting for a moment where I feel not tired. Waiting for the sound of some food to actually sound delicious. Waiting to be able to move on. Waiting...........
I want to say a BIG THANK YOU to my friend Jim, who stepped up and cut my grass for me on Monday. With Dean on vacation, I just mentioned at church that I might need some help and within an hour or so, it was arranged. I AM SO BLESSED!!!!
Well, I am tired and I still have a few minor things to do. Here's some irony. For those who have a cleaning service, do you pick up stuff around the house and put it somewhere so the cleaning people won't hide it from you????
Good night.......
Also, I wish I had an appetite. No food or drink ever sounds good. Don't know if I lost any weight. Don't own a scale. Although my belt buckle has moved up a notch or so. It seems like I am just waiting. Waiting for this to end. Waiting for a moment where I feel not tired. Waiting for the sound of some food to actually sound delicious. Waiting to be able to move on. Waiting...........
I want to say a BIG THANK YOU to my friend Jim, who stepped up and cut my grass for me on Monday. With Dean on vacation, I just mentioned at church that I might need some help and within an hour or so, it was arranged. I AM SO BLESSED!!!!
Well, I am tired and I still have a few minor things to do. Here's some irony. For those who have a cleaning service, do you pick up stuff around the house and put it somewhere so the cleaning people won't hide it from you????
Good night.......
Monday, June 1, 2015
The Last Roundup
Tomorrow I start my 3rd and last round of chemo. After the first round - no problem. But after the second round, I still am not the same man. So here's hoping the 3rd round goes quickly and I will just deal with it as it comes. They didn't give me the dirtiest, nastiest one of the three possible treatments for no good reason. So bring it on! - Hold it - Wait. Does anyone got some pot to sell? This 3rd round may call for alternative medical solutions.
I did get to play golf on Sunday. Thanks to my playing partners - Dan, Dawn, and Paul - they help make each outing an enjoyable time no matter how poorly I play. Latter Barb, Dean, and Ashlee (Dean's girlfriend) came over for an early birthday celebration (I kind of think I'm not going to want to celebrate much on the 5th). We went to dinner, had cake, played a mean game of Clue, and then taught Dean and Ashlee how to play Euchre. It was one of the nicest nights I had in a while and we had fun as a family. I miss playing cards.
With this week passing, I move closer to the final solution. The surgery - RC and neobladder. Of course, it would also be nice to know if the cancer has spread to anywhere else. And surgery will help tell that. But that doesn't seem to matter to me. The damn RC and neobladder is what occupies my mind. I have to start to prepare mentally for this new life - in a POSITIVE mind set.
I'm tired - a common feeling lately. Time for bed.
Good night.
I did get to play golf on Sunday. Thanks to my playing partners - Dan, Dawn, and Paul - they help make each outing an enjoyable time no matter how poorly I play. Latter Barb, Dean, and Ashlee (Dean's girlfriend) came over for an early birthday celebration (I kind of think I'm not going to want to celebrate much on the 5th). We went to dinner, had cake, played a mean game of Clue, and then taught Dean and Ashlee how to play Euchre. It was one of the nicest nights I had in a while and we had fun as a family. I miss playing cards.
With this week passing, I move closer to the final solution. The surgery - RC and neobladder. Of course, it would also be nice to know if the cancer has spread to anywhere else. And surgery will help tell that. But that doesn't seem to matter to me. The damn RC and neobladder is what occupies my mind. I have to start to prepare mentally for this new life - in a POSITIVE mind set.
I'm tired - a common feeling lately. Time for bed.
Good night.
Thursday, May 28, 2015
Quick Update
Tomorrow is Friday and I was hoping to feel back at full strength for the weekend. But I don't think that is going to happen. This 2nd round of chemo seems to be hanging on for a while. A general lack of energy, lack of appetite, and shortness of breathe seem to be an everyday situation. For some reason with this go around I have developed sinus pain and swelling. Just something else to deal with. None of this makes it impossible to function. But all them combined does make it a challenge.
The problem is that starting Tuesday I start my 3rd and final round of chemo. I am nervous that if I go into this last round in a weak state, the 3rd treatment will really leave me in a bad state. I can see a possibility of a minimum 2 week recovery. I know they want to get a CT scan done after my chemo, but it will be a while before I can hold down all the contrast they want me to drink.
Well, I hope I feel well enough to play 9 holes on Sunday. I won't even try to walk, it will be a cart for me.
Good night.
The problem is that starting Tuesday I start my 3rd and final round of chemo. I am nervous that if I go into this last round in a weak state, the 3rd treatment will really leave me in a bad state. I can see a possibility of a minimum 2 week recovery. I know they want to get a CT scan done after my chemo, but it will be a while before I can hold down all the contrast they want me to drink.
Well, I hope I feel well enough to play 9 holes on Sunday. I won't even try to walk, it will be a cart for me.
Good night.
Thursday, May 21, 2015
Feeling Strange
Well, I just finished round 2 of chemo today and am feeling the effects. Thank goodness for nausea medicine. But what has got to me this round is this strange addition a surgeon put into my upper chest on Tuesday morning. It is my port, a device that allows medicine(?) to be more easily delivered to my blood stream. It is inserted under my skin near my left side collar bone and travels down into or a vessel near my heart. I guess this because before I left the hospital, they do a quick chest x ray to make sure the port didn't slide to far down into the heart. Anyway, tonight I got to take off the bandages and shower. For the first time I was able to look at this object pushing out of my chest. It is tender and does not look like it belongs. I stare into the mirror at this thing and the thoughts and emotions of having to have this damn thing in my body come to the surface. And one emotion that rises is I feel a little scared. I'm going to be wearing this thing for a long time and I suppose I will get used to it. But right now it is a symbol of what has gone wrong in me.
Time to try and sleep
Good night
Time to try and sleep
Good night
Monday, May 18, 2015
Starting Chemo Again
I know it's been a while since I've logged in. I just there isn't much to say. I really started to feel better around Thursday. I got my appetite back and haven't taken medication for a while. I enjoyed cooking some of my favorite foods and I know I've put back on all of the weight I may have lost.
But tomorrow everything changes. I have to be at the hospital surgical center at 6:00 am to have my chemo port installed. The port is a little IV type devise that gets inserted under my color bone. I don't know if anything sticks out of my skin. I just know that the chemo nurses will plug into the port for an easier way to transfer the chemo drugs. Then at 9:30, it's over to the chemo clinic to start the 1st treatment of round two. I hope it goes at least as well as the first round. This time I will just stay on the medication and hope it continues to help.
I have learned that I am to have 3 rounds of chemo, not 4. Don't know why. When I am done they will do another CT scan and see how I look. See if the spots still are present or any new spots - i.e. has the cancer spread outside the bladder. And maybe did they shrink the present tumor in my bladder. I will meet with my doctor and discuss when the surgery will take place. looking at things, I'm going to guess mid July. We'll see.
Speaking of Doctors, I am going to vent again. I have tried to ask questions via email to my doctor's staff - who answers his email. They say my questions are good, but are best answered in person or over the phone. So as an example, here's one of my questions. "How many neobladders or ileal conduits has Dr. Dechet performed in the last 12 months? In the last 5 years?" When I asked why this question could not be answered by email, they then told me, "This will have to be answered by Dr. Dechet. We do not keep a list of how many procedures he has preformed. I can assure you he has a lot of experience in this procedure."
I am trying hard to educate myself so I can make the best decisions I can. I read a lot. And one source is the BCAN Inspire forum. I can't tell you the number of comments that say- "Find out how many he's done", "Get the most experienced surgeon you can", "Experience matters". So how am I supposed to feel about this Dr. Dechet? I have already asked him this question to his face every time we have met and he blows it off and says he does more then anyone else in this area. Well yes I can believe that. But that doesn't answer my Fu#*^#g question!!!
Anyway, the Huntsman Cancer Institute is the only local choice I have. I don't know if I have the courage to look out of state. I am envious of those who live in larger metropolitan areas who can choose from 3 hospitals.
Enough for now. Time to ease my mind so I can sleep. Good night.
But tomorrow everything changes. I have to be at the hospital surgical center at 6:00 am to have my chemo port installed. The port is a little IV type devise that gets inserted under my color bone. I don't know if anything sticks out of my skin. I just know that the chemo nurses will plug into the port for an easier way to transfer the chemo drugs. Then at 9:30, it's over to the chemo clinic to start the 1st treatment of round two. I hope it goes at least as well as the first round. This time I will just stay on the medication and hope it continues to help.
I have learned that I am to have 3 rounds of chemo, not 4. Don't know why. When I am done they will do another CT scan and see how I look. See if the spots still are present or any new spots - i.e. has the cancer spread outside the bladder. And maybe did they shrink the present tumor in my bladder. I will meet with my doctor and discuss when the surgery will take place. looking at things, I'm going to guess mid July. We'll see.
Speaking of Doctors, I am going to vent again. I have tried to ask questions via email to my doctor's staff - who answers his email. They say my questions are good, but are best answered in person or over the phone. So as an example, here's one of my questions. "How many neobladders or ileal conduits has Dr. Dechet performed in the last 12 months? In the last 5 years?" When I asked why this question could not be answered by email, they then told me, "This will have to be answered by Dr. Dechet. We do not keep a list of how many procedures he has preformed. I can assure you he has a lot of experience in this procedure."
I am trying hard to educate myself so I can make the best decisions I can. I read a lot. And one source is the BCAN Inspire forum. I can't tell you the number of comments that say- "Find out how many he's done", "Get the most experienced surgeon you can", "Experience matters". So how am I supposed to feel about this Dr. Dechet? I have already asked him this question to his face every time we have met and he blows it off and says he does more then anyone else in this area. Well yes I can believe that. But that doesn't answer my Fu#*^#g question!!!
Anyway, the Huntsman Cancer Institute is the only local choice I have. I don't know if I have the courage to look out of state. I am envious of those who live in larger metropolitan areas who can choose from 3 hospitals.
Enough for now. Time to ease my mind so I can sleep. Good night.
Tuesday, May 12, 2015
Chemo Effects
Well it's now been 1 week since I started my first chemo treatment. I was so truly hoping that the effects of the chemo would have warn off by now. To test these waters, I would periodically not take my nausea pill and see how my body would react. I tried this on Monday morning and that was a mistake. I was feeling oh so miserable that when I made it home for lunch, I took my pill and took a hour long nap to recover.
I knew I needed to get my grass cut Monday night, but I also knew I didn't want to do it. So I owe a BIG thank you to my son Dean who came over on short notice and spent a hour cutting my grass. And I did all the trimming.
Dean and I had a nice visit and he reminded me to just take the stupid nausea pills and stop screwing around. So I'm taking his advice for now - 1 pill every 8 hrs. And I must admit I do feel better. But I know my curiosity will get the best of me and I will skip a pill to see if I have fully recovered.
I was really hoping to golf this weekend, but it looks like rain all weekend. I'll keep hoping.
BTW, I am still working on the big issues like what type of urinary diversion I will choose and if it is worth traveling out of state to have the surgery done. I posted some questions on the BCAN website and haven't received a meaningful response yet. BCAN - bladder cancer advocacy network is a good site for information. I just hope I can get some answers to my questions.
Good Night.
I knew I needed to get my grass cut Monday night, but I also knew I didn't want to do it. So I owe a BIG thank you to my son Dean who came over on short notice and spent a hour cutting my grass. And I did all the trimming.
Dean and I had a nice visit and he reminded me to just take the stupid nausea pills and stop screwing around. So I'm taking his advice for now - 1 pill every 8 hrs. And I must admit I do feel better. But I know my curiosity will get the best of me and I will skip a pill to see if I have fully recovered.
I was really hoping to golf this weekend, but it looks like rain all weekend. I'll keep hoping.
BTW, I am still working on the big issues like what type of urinary diversion I will choose and if it is worth traveling out of state to have the surgery done. I posted some questions on the BCAN website and haven't received a meaningful response yet. BCAN - bladder cancer advocacy network is a good site for information. I just hope I can get some answers to my questions.
Good Night.
Friday, May 8, 2015
Treatment Begins Finally
Well I finally started my chemo treatments on Tuesday (5/5/15). I didn't want to wait any longer. I didn't want to wait a week to have my port put in. I just wanted to get started and I was happy to be able to have my treatments here in Logan. So at 9:00 in the morning I show up just a little nervous. Wondering how my body is going to react to these chemicals. Wondering if I will be strong enough to endure to process.
The staff at Dr. Ben-Jacobs office are great. The nurses take me in and give me my IV for the drip. My treatment is called dose dense MVAV. On my first day I only will receive the M (Methotrexate) with hydration. This takes about 3 hrs. to drip into my body. I leave and I can't believe that I feel just fine. I go back to work and at the end of the day I still feel well enough to take my 4 mi. walk.
On Wednesday I start at 9:30. This is the heavy day. I receive V, A, and C (Vinblastine, Doxorubicin, and Cisplatin) with hydration. This is a long day and takes about 6 hrs. of sitting watching the drips go in. When I leave I am surprised that I feel pretty good. I go back to work and attend a meeting at night. I have to admit that I was starting to feel a little cocky. I'm thinking this chemo stuff isn't going to affect me like it does everyone else. Wrong. That night in bed it started. Upset stomach, gagging, nausea kicked in. I came downstairs and choose one of the three nausea pills and hoped for the best. Somehow I fell back to sleep.
On Thursday I need to go in and get a shot of Neulasta. A drug to help with your white blood cell count and help you from getting an infection. The trick with this is they gave me pills that I am supposed to take of morning of and for 2 days after. Not sure why, but I forgot to take them in the morning. I took them at noon and had the shot at 2:00.
And now it's Friday night and I am still waiting to try to feel normal again. My nausea isn't severe. I'm not throwing up like some do. I can eat a little at meals and keep it down. To be honest the best way I can describe how I feel is I have a constant hangover. Now it's been a real long time since I've had a hangover, but I do remember that feeling. My stomach is queasy and unsettled. I feel like I could barf, but I don't. My head is numb and I don't have a lot of energy. I guess if this is as bad as it gets, I should be grateful. I have heard stories of worse reactions. But still I wish I could just feel normal.
I think feeling normal is a phrase I've been using lately. As I continue in my treatment, I think I know that there will never be that old normal again. I will have to discover what a new normal means and I hope I have the courage to make that discovery the best possible.
Good night for now.
The staff at Dr. Ben-Jacobs office are great. The nurses take me in and give me my IV for the drip. My treatment is called dose dense MVAV. On my first day I only will receive the M (Methotrexate) with hydration. This takes about 3 hrs. to drip into my body. I leave and I can't believe that I feel just fine. I go back to work and at the end of the day I still feel well enough to take my 4 mi. walk.
On Wednesday I start at 9:30. This is the heavy day. I receive V, A, and C (Vinblastine, Doxorubicin, and Cisplatin) with hydration. This is a long day and takes about 6 hrs. of sitting watching the drips go in. When I leave I am surprised that I feel pretty good. I go back to work and attend a meeting at night. I have to admit that I was starting to feel a little cocky. I'm thinking this chemo stuff isn't going to affect me like it does everyone else. Wrong. That night in bed it started. Upset stomach, gagging, nausea kicked in. I came downstairs and choose one of the three nausea pills and hoped for the best. Somehow I fell back to sleep.
On Thursday I need to go in and get a shot of Neulasta. A drug to help with your white blood cell count and help you from getting an infection. The trick with this is they gave me pills that I am supposed to take of morning of and for 2 days after. Not sure why, but I forgot to take them in the morning. I took them at noon and had the shot at 2:00.
And now it's Friday night and I am still waiting to try to feel normal again. My nausea isn't severe. I'm not throwing up like some do. I can eat a little at meals and keep it down. To be honest the best way I can describe how I feel is I have a constant hangover. Now it's been a real long time since I've had a hangover, but I do remember that feeling. My stomach is queasy and unsettled. I feel like I could barf, but I don't. My head is numb and I don't have a lot of energy. I guess if this is as bad as it gets, I should be grateful. I have heard stories of worse reactions. But still I wish I could just feel normal.
I think feeling normal is a phrase I've been using lately. As I continue in my treatment, I think I know that there will never be that old normal again. I will have to discover what a new normal means and I hope I have the courage to make that discovery the best possible.
Good night for now.
Monday, May 4, 2015
Moving On
It's been a while since I've wrote anything down. Sometimes I need to get away or maybe I just get lazy. So last Thursday I had appointments at the Huntsman. I left my house at 7:00 am and returned home at 8:00 pm. Needless to say it was a long day and I was exhausted. We met with Dr. Dechet. He seemed more compassionate this time and willing to listen and answer questions. Of course the news was as I expected, the bladder, prostate, and whatever else has to go. We discussed my treatment - chemotherapy (6 weeks) and then surgery. He recommended that I receive the most powerful of the 3 recommended chemo treatments - ddMVAC (hope I have that right). The dd stands for dose dense. I think I will wait to explain this treatment and drugs for latter. Anyways, assuming I make it through the chemo, they will then schedule me for my RC surgery. There is about a 4 week wait for that to happen.
We then discussed my wonderful 3 choices for urinary diversion - neobladder, Indiana pouch, and Ileal conduit. I asked many questions and received adequate answers. I told them that what I really would like is to meet men who have these 3 options so I can see for myself how these men use these devices. They said they would try to help me. They said each patient signs a 1 year release form and they need to check with people. It sounded like I was asking some strange request. Really - no other dumbass is curious enough about the next 5-20 years of his life that he doesn't want to talk to people who are already walking down this road????? We finished with a nurse showing me actual urostomy bag and how they fit to your stoma. It was helpful, but I still don't see how you could possibly wear a belt or jeans for that matter. I just don't see things loose enough to have the urine drain properly. Just more questions I have to figure out how to get answers to.
We had to wait till 3:00 to see Dr. Gupta, the oncologist. So Barb and I had lunch and went to the Utah Fine Arts Museum to kill the time.
Dr. Gupta and her team sat down with us and explained the chemo treatment and how it worked. She said that we need to get started right away. It's 2 days of treatment with a shot on the 3rd day to help with my white blood cell count. I have full faith in Dr. Gupta and her team, but Barb and I had wanted to discuss if it was possible for me to get my chemo treatment her in Logan. The nausea and a 2 hr. drive back to Logan 2X a week for 6 weeks just seemed something we might want to avoid. The only problem was that the oncologist in Logan does not necessarily agree chemo before surgery. Dr. Gupta graciously agreed to ask Dr. Ben Jacob to work with us and administer my chemo and he agreed. I was surprised and happy that my drive is 5 min. and not 2 hrs. He agreed to follow Dr. Gupta's game plan. I will say that with the time approaching 5:00, the staff at the Huntsman went way above their duties to try and get my heart test and other details transferred up to Logan and scheduled as quickly as possible. By the time we left my mind was exhausted and I gad a long drive home in rush hour traffic.
So Friday I had my echocardiogram at Logan Hospital. I was hoping to here from Dr. Ben Jacobs office, but when I stopped by at 4:00, they were closed. So I wait till Monday.
The weekend was nice. I am learning to enjoy these last few weeks with a normal functioning body. I'll hate to see it go.
So today I called Dr. Ben Jacob's office and the nurse said the ball got dropped on Friday. I am scheduled for consultation with a surgeon on Wednesday who will put in my port and on Friday he will do the procedure. I am anxious to get this started and I want to start on a Monday so I can be done by Tuesday and have as much time to recover by the weekend. The nurse said they could hook me up without a port for the first week. But the bottom line is that even though I chased down the echo report for the Doctor, I didn't start today. Oh well, let's try tomorrow.
When I saw Dr. Gupta at the Huntsman on Thursday, the first thing she said was, "We need to get going on this. It seems you have been dragging your feet." REALLY? As I said, let's try tomorrow.
For now, Good Night.
We then discussed my wonderful 3 choices for urinary diversion - neobladder, Indiana pouch, and Ileal conduit. I asked many questions and received adequate answers. I told them that what I really would like is to meet men who have these 3 options so I can see for myself how these men use these devices. They said they would try to help me. They said each patient signs a 1 year release form and they need to check with people. It sounded like I was asking some strange request. Really - no other dumbass is curious enough about the next 5-20 years of his life that he doesn't want to talk to people who are already walking down this road????? We finished with a nurse showing me actual urostomy bag and how they fit to your stoma. It was helpful, but I still don't see how you could possibly wear a belt or jeans for that matter. I just don't see things loose enough to have the urine drain properly. Just more questions I have to figure out how to get answers to.
We had to wait till 3:00 to see Dr. Gupta, the oncologist. So Barb and I had lunch and went to the Utah Fine Arts Museum to kill the time.
Dr. Gupta and her team sat down with us and explained the chemo treatment and how it worked. She said that we need to get started right away. It's 2 days of treatment with a shot on the 3rd day to help with my white blood cell count. I have full faith in Dr. Gupta and her team, but Barb and I had wanted to discuss if it was possible for me to get my chemo treatment her in Logan. The nausea and a 2 hr. drive back to Logan 2X a week for 6 weeks just seemed something we might want to avoid. The only problem was that the oncologist in Logan does not necessarily agree chemo before surgery. Dr. Gupta graciously agreed to ask Dr. Ben Jacob to work with us and administer my chemo and he agreed. I was surprised and happy that my drive is 5 min. and not 2 hrs. He agreed to follow Dr. Gupta's game plan. I will say that with the time approaching 5:00, the staff at the Huntsman went way above their duties to try and get my heart test and other details transferred up to Logan and scheduled as quickly as possible. By the time we left my mind was exhausted and I gad a long drive home in rush hour traffic.
So Friday I had my echocardiogram at Logan Hospital. I was hoping to here from Dr. Ben Jacobs office, but when I stopped by at 4:00, they were closed. So I wait till Monday.
The weekend was nice. I am learning to enjoy these last few weeks with a normal functioning body. I'll hate to see it go.
So today I called Dr. Ben Jacob's office and the nurse said the ball got dropped on Friday. I am scheduled for consultation with a surgeon on Wednesday who will put in my port and on Friday he will do the procedure. I am anxious to get this started and I want to start on a Monday so I can be done by Tuesday and have as much time to recover by the weekend. The nurse said they could hook me up without a port for the first week. But the bottom line is that even though I chased down the echo report for the Doctor, I didn't start today. Oh well, let's try tomorrow.
When I saw Dr. Gupta at the Huntsman on Thursday, the first thing she said was, "We need to get going on this. It seems you have been dragging your feet." REALLY? As I said, let's try tomorrow.
For now, Good Night.
Wednesday, April 29, 2015
Anger issues
Tomorrow morning Barb and I drive down to the Huntsman for an office visit with Dr. Dechet (urologist) and Dr. Gupta (oncologist). This will be my first visit since my biopsy / TURBT. I am anxious to ask Dr. Dechet why I was in so much pain after this procedure. No one forewarned me about this aspect which I feel might have been nice. I really have my doubts about how much compassion this guy has for his patients. He may be the most experienced in this area, but without showing some compassion for my situation leaves me feeling a little angry. So I am anxious to see how this meeting goes and I will try not to start out with a chip on my shoulder over the pain of the last procedure and troubles there after.
So here's what I think will go down tomorrow. Dr. Dechet will come in and tell me my bladder is not fit to try to save. I wanted to try to keep my bladder and just cut out the tumor part of the bladder. This treatment is called a partial cystectomy. I figured part of a bladder is better then none. But as I said at the end of my last post, very few qualify for this. And few doctors will agree to do it. So here comes the part that REALLY SUCKS. Dr. Dechet will then tell me that the way to proceed from here is to perform a radical cystectomy. This is a lovely procedure where they remove your bladder, prostate, and as many adrenal glands as they can get to. Of course, removing the bladder really complicates that action we all do 5-10 times a day - called taking a piss!!! So to solve this problem, medical science will recommend the same procedures they have been doing for the last 40-80 years. You have 3 options - the ileal conduit (you pee into a bag on the outside of your body), the Indiana pouch (they build and attach a bag to the inside wall and you put a catheter in your side to empty), or a neo bladder (an artificial bladder that is plumbed so you can still pee through your penis - at least this option still gives you a reason to still have a penis.) Of coarse with all of these options, you loose the 2nd most important function of the real bladder (the 1st is storing urine), the ability to feel when it is time to urinate. With all of these options, you learn to pee by the clock so to speak. With option 1, the ileal conduit, since the bag is on the outside you have a visual reference.
So this will be my treatment (find everything that might have cancer and cut it out) and my options (figure out how to make it function after we are done). What I have been wondering is how does anyone make a decision based on these 3 options? I know I will have to. And the more I read about these procedures, you realize that all have good and bad points. They all require a lifetime of maintenance. And there are no do overs and the success of whatever option you choose will be affected by the skills of your surgeon.
So do I sound a little angry? And I really don't appreciate when people say, "Oh it's no big deal. You just need to deal with it." Really!! They are f''ing up the most basic of all human functions. Within minutes when we are born, they put a diaper on us. As a child our proud parents proclaim, "Look, he can go pee pee all by himself. He's potty trained." And then there is the shame if you are a bed wetter or you pee your pants in public. And God knows all the potty humor jokes that are forever present every single day of our lives in one way or another.
Of course the most common response I get when I go off on my angry rant, "Would you rather be dead?" Oh - ya - touché. Got me.
Anyway, I know holding on to this anger is not healthy for me. But trust me when I tell you that I have a whole lot more anger then this stored inside me. I feel so many wrong things have led me to this position I'm in now. And I guess overcoming a stroke and a heart attack isn't enough of a challenge for one lifetime. Sometimes it's like an emotional cancer eating me up on the inside and I can't figure out how to cut it out. Yes, I can pray to God, but unfortunately she's on my angry list also. Sometimes it can be a real mess inside me. Somehow, somewhere, sometime the fighter and conqueror will emerge. I hope. He has to. If not, I may get eaten by 2 cancers.
By the way, I do have very positive moments. They do come and I try to hold on to them. A moment like now when I realize and am so grateful for all my family and friends who are praying for me, rooting for me, wanting to help me. Thank you so very much!!!!
Well, let's see if the script I wrote for tomorrow is correct. Maybe I'll be surprised. But for now I'll try and find some peace and with it some sleep. With love - Good Night.
So here's what I think will go down tomorrow. Dr. Dechet will come in and tell me my bladder is not fit to try to save. I wanted to try to keep my bladder and just cut out the tumor part of the bladder. This treatment is called a partial cystectomy. I figured part of a bladder is better then none. But as I said at the end of my last post, very few qualify for this. And few doctors will agree to do it. So here comes the part that REALLY SUCKS. Dr. Dechet will then tell me that the way to proceed from here is to perform a radical cystectomy. This is a lovely procedure where they remove your bladder, prostate, and as many adrenal glands as they can get to. Of course, removing the bladder really complicates that action we all do 5-10 times a day - called taking a piss!!! So to solve this problem, medical science will recommend the same procedures they have been doing for the last 40-80 years. You have 3 options - the ileal conduit (you pee into a bag on the outside of your body), the Indiana pouch (they build and attach a bag to the inside wall and you put a catheter in your side to empty), or a neo bladder (an artificial bladder that is plumbed so you can still pee through your penis - at least this option still gives you a reason to still have a penis.) Of coarse with all of these options, you loose the 2nd most important function of the real bladder (the 1st is storing urine), the ability to feel when it is time to urinate. With all of these options, you learn to pee by the clock so to speak. With option 1, the ileal conduit, since the bag is on the outside you have a visual reference.
So this will be my treatment (find everything that might have cancer and cut it out) and my options (figure out how to make it function after we are done). What I have been wondering is how does anyone make a decision based on these 3 options? I know I will have to. And the more I read about these procedures, you realize that all have good and bad points. They all require a lifetime of maintenance. And there are no do overs and the success of whatever option you choose will be affected by the skills of your surgeon.
So do I sound a little angry? And I really don't appreciate when people say, "Oh it's no big deal. You just need to deal with it." Really!! They are f''ing up the most basic of all human functions. Within minutes when we are born, they put a diaper on us. As a child our proud parents proclaim, "Look, he can go pee pee all by himself. He's potty trained." And then there is the shame if you are a bed wetter or you pee your pants in public. And God knows all the potty humor jokes that are forever present every single day of our lives in one way or another.
Of course the most common response I get when I go off on my angry rant, "Would you rather be dead?" Oh - ya - touché. Got me.
Anyway, I know holding on to this anger is not healthy for me. But trust me when I tell you that I have a whole lot more anger then this stored inside me. I feel so many wrong things have led me to this position I'm in now. And I guess overcoming a stroke and a heart attack isn't enough of a challenge for one lifetime. Sometimes it's like an emotional cancer eating me up on the inside and I can't figure out how to cut it out. Yes, I can pray to God, but unfortunately she's on my angry list also. Sometimes it can be a real mess inside me. Somehow, somewhere, sometime the fighter and conqueror will emerge. I hope. He has to. If not, I may get eaten by 2 cancers.
By the way, I do have very positive moments. They do come and I try to hold on to them. A moment like now when I realize and am so grateful for all my family and friends who are praying for me, rooting for me, wanting to help me. Thank you so very much!!!!
Well, let's see if the script I wrote for tomorrow is correct. Maybe I'll be surprised. But for now I'll try and find some peace and with it some sleep. With love - Good Night.
Monday, April 27, 2015
Some Bladder Cancer Stats
Bladder cancer is the 6th most common cancer and the 4th most common in men.
Men are 3-4 more times likely to get bladder cancer.
Bladder cancer has over 72,000 new cases each years and kills over 15,000 per year.
The ave. age of a bladder cancer person is 73 yrs old. 9 out 10 people are over 50 yrs old.
The National Cancer Institute spends only 23.4 million on bladder cancer research.
Bladder cancer has a reoccurrence rate of 50-80% and therefore requires life long surveillance. Because of this it is the most expensive cancer to treat on a per patient basis.
Over 20 % of bladder cancer cases are high grade muscle invasive.
The 5 yr. survival rate of stage 2b muscle invasive bladder cancer is 50%.
I hope I have all of these stats correct. My sources ACS, NCI, BCAN.
The treatment for bladder cancer has not changed in over 30 years. With my stage (2b) of bladder cancer, there is supposed to be 3 treatment options. This is very misleading. The 2 least invasive treatments are rarely performed because so few patients qualify for these procedures. For instance one of several requirements is that you must have only one single tumor in your bladder in only certain locations and no other signs of any other stages of cancer in your bladder. Well this is next to impossible for someone with high grade carcinoma. So in reality there is only one gold standard treatment for people like me with stage 2b bladder cancer. And I think it sucks.
Men are 3-4 more times likely to get bladder cancer.
Bladder cancer has over 72,000 new cases each years and kills over 15,000 per year.
The ave. age of a bladder cancer person is 73 yrs old. 9 out 10 people are over 50 yrs old.
The National Cancer Institute spends only 23.4 million on bladder cancer research.
Bladder cancer has a reoccurrence rate of 50-80% and therefore requires life long surveillance. Because of this it is the most expensive cancer to treat on a per patient basis.
Over 20 % of bladder cancer cases are high grade muscle invasive.
The 5 yr. survival rate of stage 2b muscle invasive bladder cancer is 50%.
I hope I have all of these stats correct. My sources ACS, NCI, BCAN.
The treatment for bladder cancer has not changed in over 30 years. With my stage (2b) of bladder cancer, there is supposed to be 3 treatment options. This is very misleading. The 2 least invasive treatments are rarely performed because so few patients qualify for these procedures. For instance one of several requirements is that you must have only one single tumor in your bladder in only certain locations and no other signs of any other stages of cancer in your bladder. Well this is next to impossible for someone with high grade carcinoma. So in reality there is only one gold standard treatment for people like me with stage 2b bladder cancer. And I think it sucks.
Saturday, April 25, 2015
Saturday Part Deuce
So after I wrote this mornings piece, I went for a nice short walk and thought of what I hoped might happen today. And for once it did!!!
My urine cleared up (very little blood) around 12:00. I talked to my mom and discussed if it was worth the risk trying to take catheter #2 out. I had to consider it was the weekend and I knew my Logan urologist was out of town. I was afraid that if I had complications, would there be an urologist around to help me. I went for it. Removed the catheter and waited to urinate. It wasn't perfect, but it was a hell of a lot better then Friday's effort. I can't tell you how relieved and happy I was. Being free of a constant bag of urine and a rubber hose dangling out of the end of my penis and pretending that it didn't bother me. HURRAY!! I'm normal again!!!!!!
I made great use of the rest of the day. I cut my grass, visited with Dean, played Frisbee golf with Dean, Ashley, and friends, and had dinner at BWW. I hope to end my day watching a movie (if I can stay wake). I would hope for a great night's sleep, but I know I will be up several times draining my bladder. I don't think it is functioning 100% since having so may days of vacation.
So VERY grateful for a normal day. I hope to enjoy a few more. I know these days are numbered.
My urine cleared up (very little blood) around 12:00. I talked to my mom and discussed if it was worth the risk trying to take catheter #2 out. I had to consider it was the weekend and I knew my Logan urologist was out of town. I was afraid that if I had complications, would there be an urologist around to help me. I went for it. Removed the catheter and waited to urinate. It wasn't perfect, but it was a hell of a lot better then Friday's effort. I can't tell you how relieved and happy I was. Being free of a constant bag of urine and a rubber hose dangling out of the end of my penis and pretending that it didn't bother me. HURRAY!! I'm normal again!!!!!!
I made great use of the rest of the day. I cut my grass, visited with Dean, played Frisbee golf with Dean, Ashley, and friends, and had dinner at BWW. I hope to end my day watching a movie (if I can stay wake). I would hope for a great night's sleep, but I know I will be up several times draining my bladder. I don't think it is functioning 100% since having so may days of vacation.
So VERY grateful for a normal day. I hope to enjoy a few more. I know these days are numbered.
I was hoping yesterday (Friday), was going to be the day that my life would triumphantly return to normal after Tuesday's biopsy. I was instructed to pull out my own catheter if my urine was mostly free of blood. My urine did look good so at 7:00 am I carefully read the instructions for the 100th time and successfully freed myself from the rubber snake. It's a feeling I am becoming used to unfortunately. I went and had breakfast and a stool softener (to try and get things moving in the rear end) and thought that I would hang around the house long enough to urinate normally one time just to make sure everything was still functioning OK. But when I got the urge to pee, there was a lot of bladder pressure but very low flow and volume. To say I was disappointed is an understatement.
I left and went to work to try and catch up on things. Lane (my business partner) has really been understanding. But after 3 hours my abdomen just hurt. I still was not urinating normally with low flow and volume. I just felt bad. So I came home and called the nurse at Huntsman and told her. She thought I needed to re-catheterize myself. She told me to go to my urologist in Logan and have them do it. I called my doctor right away and they said the doctor was out but the PA would fit me in asap. Thanks to my lovely neighbor Dorothy, I was able to get a ride to the hospital. When I saw the PA, he felt my abdomen and asked if I had had a bowel movement. I said no that I only have been able to pass gas. An ultrasound showed I had only retained about a cup of liquid in my bladder after just urinating. He didn't think I needed a catheter, but just needed to get a bowel movement in asap. He said a catheter wouldn't be bad if it would make me feel more comfortable. Boy am I confused now. Just my luck that abdominal constipation pain and bladder voiding issues would happen at the same time on a late Friday afternoon. We decided to put the catheter in. I called lovely Dorothy, who kindly came and gave me a ride home. Once I got home I decided to sit on the toilet until I had a bowel movement. And a bowel movement I had!! Yea!! You know I felt a hell of a lot better. And it made me think if getting the catheter was a mistake.
So now I have this catheter with a much smaller but more mobile bag. And I'm watching it fill up with a red colored liquid. Blood. What! Why! Why is there blood in my urine now?? There was barely a trace of blood when I removed the 1st catheter this morning and when I was urinating during the day. What has happened? What has changed? Where is the blood coming from? The PA had told me that if I had had a bowel movement that I had his permission to pull the catheter. But I was told by the nurses to not pull the catheter if you are bleeding. I am upset, but I realize the only thing I can do is just wait and see if it clears up later in the night.
I try to relax as I watch my hopeful day slip away. And to add a bit of irony to the day, I watch "Alexander and the Terrible, Horrible, No Good, Very Bad Day." It wasn't as funny as I had hoped. I went to bed, with blood still draining into my catheter bag. And with my smaller bag, the realization that I will be setting my alarm for every 2 hours throughout the night to empty my bag of bloody urine.
You know spending a lot of time by yourself gives you the luxury of talking out loud to yourself. I confess I do this. And last night as I lay in bed I let my anger out. I am afraid I still have not reconciled or accepted the circumstances I find myself in. And so as I prayed aloud with my angry voice, I shouted to God my anger and fears. And when I was done crying, I laid still on my back and thought of nothing and hoped that sleep would come.
I left and went to work to try and catch up on things. Lane (my business partner) has really been understanding. But after 3 hours my abdomen just hurt. I still was not urinating normally with low flow and volume. I just felt bad. So I came home and called the nurse at Huntsman and told her. She thought I needed to re-catheterize myself. She told me to go to my urologist in Logan and have them do it. I called my doctor right away and they said the doctor was out but the PA would fit me in asap. Thanks to my lovely neighbor Dorothy, I was able to get a ride to the hospital. When I saw the PA, he felt my abdomen and asked if I had had a bowel movement. I said no that I only have been able to pass gas. An ultrasound showed I had only retained about a cup of liquid in my bladder after just urinating. He didn't think I needed a catheter, but just needed to get a bowel movement in asap. He said a catheter wouldn't be bad if it would make me feel more comfortable. Boy am I confused now. Just my luck that abdominal constipation pain and bladder voiding issues would happen at the same time on a late Friday afternoon. We decided to put the catheter in. I called lovely Dorothy, who kindly came and gave me a ride home. Once I got home I decided to sit on the toilet until I had a bowel movement. And a bowel movement I had!! Yea!! You know I felt a hell of a lot better. And it made me think if getting the catheter was a mistake.
So now I have this catheter with a much smaller but more mobile bag. And I'm watching it fill up with a red colored liquid. Blood. What! Why! Why is there blood in my urine now?? There was barely a trace of blood when I removed the 1st catheter this morning and when I was urinating during the day. What has happened? What has changed? Where is the blood coming from? The PA had told me that if I had had a bowel movement that I had his permission to pull the catheter. But I was told by the nurses to not pull the catheter if you are bleeding. I am upset, but I realize the only thing I can do is just wait and see if it clears up later in the night.
I try to relax as I watch my hopeful day slip away. And to add a bit of irony to the day, I watch "Alexander and the Terrible, Horrible, No Good, Very Bad Day." It wasn't as funny as I had hoped. I went to bed, with blood still draining into my catheter bag. And with my smaller bag, the realization that I will be setting my alarm for every 2 hours throughout the night to empty my bag of bloody urine.
You know spending a lot of time by yourself gives you the luxury of talking out loud to yourself. I confess I do this. And last night as I lay in bed I let my anger out. I am afraid I still have not reconciled or accepted the circumstances I find myself in. And so as I prayed aloud with my angry voice, I shouted to God my anger and fears. And when I was done crying, I laid still on my back and thought of nothing and hoped that sleep would come.
Thursday, April 23, 2015
Feelings
It's Thursday night. One more night with this foley catheter and in the morning I get to pull it out. Should be fine, I hope. There isn't any blood in my urine, but it is still uncomfortable to urinate. I am not sure what the problem is. I just hope it corrects itself once the catheter is out. I will be glad to be free of the tube and bag.
You know right now I am just feeling tired. Tired of thinking about my cancer. Tired of thinking about what happened in the past. Tired of thinking about what might happen in the future. Tired of thinking about test results. Tired of thinking about if I am choosing the right doctors. Tired of thinking about the next doctor's appointment. Tired of thinking about what choices I may have to make in the next 4 weeks. Tired of thinking about how I will ever be able to make such a choice. Tired of thinking about what my quality of life will be after these choices. Tired of thinking about if I will have the medical and personnel support I will need to help me through this transition. Tired of thinking about how will I be able to work and meet financial obligations. Tired of thinking about how this is affecting my family. Sometimes I get tired.
Thinking of family, maybe I should take some time to explain my unusual family situation. I will spare you of the details. I have a son, Dean, who is 21 years old and has moved out of the house a year or so ago. I feel he lives the life of a typical 21 yr old who doesn't know what to do with his life. I am married. I have been married to Barbara for 22 yrs and we have been separated for 15 of those years. Barbara has been a great help to me in these last weeks. She has gone with me to doctor's appointments and stayed with me through the surgeries. She tries to help me the best she can. But Barbara has her own issues and I wonder how well she will hold up if things start to go south for me. I do have many good friends who have offered their support and I know if I needed help they would respond. And I have always had the support of all my family. I just hope that the surgeries will leave me in a place where I can function well enough on my own.
Not much more to say tonight. I am tired. Just want to say thank you to everyone for their thoughts and prayers. Thank you to Barbara for her time and support.
You know right now I am just feeling tired. Tired of thinking about my cancer. Tired of thinking about what happened in the past. Tired of thinking about what might happen in the future. Tired of thinking about test results. Tired of thinking about if I am choosing the right doctors. Tired of thinking about the next doctor's appointment. Tired of thinking about what choices I may have to make in the next 4 weeks. Tired of thinking about how I will ever be able to make such a choice. Tired of thinking about what my quality of life will be after these choices. Tired of thinking about if I will have the medical and personnel support I will need to help me through this transition. Tired of thinking about how will I be able to work and meet financial obligations. Tired of thinking about how this is affecting my family. Sometimes I get tired.
Thinking of family, maybe I should take some time to explain my unusual family situation. I will spare you of the details. I have a son, Dean, who is 21 years old and has moved out of the house a year or so ago. I feel he lives the life of a typical 21 yr old who doesn't know what to do with his life. I am married. I have been married to Barbara for 22 yrs and we have been separated for 15 of those years. Barbara has been a great help to me in these last weeks. She has gone with me to doctor's appointments and stayed with me through the surgeries. She tries to help me the best she can. But Barbara has her own issues and I wonder how well she will hold up if things start to go south for me. I do have many good friends who have offered their support and I know if I needed help they would respond. And I have always had the support of all my family. I just hope that the surgeries will leave me in a place where I can function well enough on my own.
Not much more to say tonight. I am tired. Just want to say thank you to everyone for their thoughts and prayers. Thank you to Barbara for her time and support.
Wednesday, April 22, 2015
You put what where?
Well I'm home from Salt Lake and my biopsy at the Huntsman Center. Tuesday was a long day. I don't know anything new concerning the extent of cancer in my bladder. I never saw the doctor on Tuesday. I did speak to an intern before the surgery. I guess I had good reason to be nervous. I was in pain from the moment I woke up from the surgery. My bladder hurt. It felt like I had to pee but nothing would happen. I would get sharp pains in my bladder. And I soon realized that the doctor did catheterized me. The nurses did everything they could to help me. I was finally able to swallow some pain pills and left the hospital around 9:30 pm. I was told that I have an appointment with the doctor on May 7th. That's more then 2 weeks away. I don't understand why I can't get in sooner. I don't understand why I was in pain after this operation. And I sure as hell don't like having this catheter shoved up my penis with 5 feet of tubing and a 600 ml bag attached. And I have the added bonus of pulling it out myself on Friday morning.
History - final episode (I hope)
So we are up to March 12, 2015 and the 2nd biopsy. I met with my Logan IHC doctor on the 17th in the evening. Of course I had already had a copy of the pathology report, so I already knew the results - high grade muscle invasive tumor. What I wanted to hear is how I went from inconclusive carcinoma in situ to stage 2b bladder cancer in 6 months. The doctor was almost apologetic and said that he thinks they missed something the first trip in. I try hard not to be angry, but it is hard. I know I have to move on. So now I took control of my situation. Since that day I have been reading everything I could find on bladder cancer. And unfortunately there was not any good news when it comes to my stage 2b cancer. I knew there was no way I was going to trust my Logan IHC doctor with my condition any more. I researched hospitals that specialized in bladder cancer - Sloan Kettering and the Mayo. But the expense of that I thought would be to much. And we do have a hospital right here in Utah that specializes in cancer treatment - the Huntsman Cancer Institute. And of course IHC does have bladder cancer doctors in Salt Lake. The more I researched doctors and hospitals, the more frustrated I became. I joked that it is easier to find a qualified plumber or mechanic then it is to find the most qualified doctor. Think about that. You have a disease that will kill you and you have very limited information on what doctor is the best and most experienced with your disease. Anyway, this is how I came to the Huntsman and I had to insist on the most experienced doctor. I found this true with the Huntsman and IHC is that they will try and push any new patient on the least senior doctor so they can gain experience and they have more time. But I want the most experienced doctor.
Sorry, one last history note. My Logan IHC doctor arranged for me to a CT scan and then a PET/CT scan in March. The purpose was to see if the cancer had spread outside my bladder. There were nodes on my lung, kidney, and pelvic bone. None of these had metastasized yet. So as far as we know now, the cancer is still in the bladder and has not spread.
There is much more I have discovered about bladder cancer that I will share as I travel through this unexpected journey.
good night
History - final episode (I hope)
So we are up to March 12, 2015 and the 2nd biopsy. I met with my Logan IHC doctor on the 17th in the evening. Of course I had already had a copy of the pathology report, so I already knew the results - high grade muscle invasive tumor. What I wanted to hear is how I went from inconclusive carcinoma in situ to stage 2b bladder cancer in 6 months. The doctor was almost apologetic and said that he thinks they missed something the first trip in. I try hard not to be angry, but it is hard. I know I have to move on. So now I took control of my situation. Since that day I have been reading everything I could find on bladder cancer. And unfortunately there was not any good news when it comes to my stage 2b cancer. I knew there was no way I was going to trust my Logan IHC doctor with my condition any more. I researched hospitals that specialized in bladder cancer - Sloan Kettering and the Mayo. But the expense of that I thought would be to much. And we do have a hospital right here in Utah that specializes in cancer treatment - the Huntsman Cancer Institute. And of course IHC does have bladder cancer doctors in Salt Lake. The more I researched doctors and hospitals, the more frustrated I became. I joked that it is easier to find a qualified plumber or mechanic then it is to find the most qualified doctor. Think about that. You have a disease that will kill you and you have very limited information on what doctor is the best and most experienced with your disease. Anyway, this is how I came to the Huntsman and I had to insist on the most experienced doctor. I found this true with the Huntsman and IHC is that they will try and push any new patient on the least senior doctor so they can gain experience and they have more time. But I want the most experienced doctor.
Sorry, one last history note. My Logan IHC doctor arranged for me to a CT scan and then a PET/CT scan in March. The purpose was to see if the cancer had spread outside my bladder. There were nodes on my lung, kidney, and pelvic bone. None of these had metastasized yet. So as far as we know now, the cancer is still in the bladder and has not spread.
There is much more I have discovered about bladder cancer that I will share as I travel through this unexpected journey.
good night
Tuesday, April 21, 2015
Biopsy #3
It's not quite 7:00 and I'm in a nice hotel suite in Salt Lake waiting to go to The Huntsman Cancer Institute for my 3rd biopsy of my bladder. They would like me there at 12:00. My surgery is scheduled for 3:00. I'll probably get back to the hotel about 6:00. I am a little nervous. This is my first surgery at the Huntsman with a new doctor who will probably be my doctor for this whole journey. At some point soon, I'm going to have to put my faith 100% into this doctor and hospital. But my past experience keeps me from doing that yet. I am nervous because the doctor and hospital seem to do things a little different then my IHC hospital in Logan. For example, this doctor tells me I may awake up to find a catheter inserted into my urethra!! Why? The doctor in Logan never even talked about that in the two biopsies he did on me. I understand the doctor will put it in while I'm asleep. But the nurse tells me that after 3-5 days I get to remove it myself. How the hell does that work? Something tells me that can't me a comfortable experience. Well, I guess I have to man up and put my faith in the doctors and staff that everything will be alright. Prayers accepted.
BTW, I haven't really said why I am having this operation. I'll have time to explain that while we wait for the pathology report.
MORE HISTORY:
OK, So we left off with the inconclusive results of the first biopsy.
Although I was upset with the results, I never really thought that I could have cancer anyway. I don't ever recall the doctor sitting down with me and saying, "Jerry, you know these problems you have been having could be symptoms of bladder cancer." And for whatever reason, I thought my problem was still in the prostate. Anyway, for what ever reason I never looked into bladder cancer myself. I choice I now regret. But I did not stop trying to help solve my urinary problems. And in hind sight this is where my anger comes.
It was the day after Christmas and I got up early and spent a beautiful morning in the mountains XC skiing. It was a good long, hard workout (at least for my age). I got home and cleaned up and about 1:00, I had to pee. I felt that sudden urgency that made me think-here we go again. And the urine came out slow, burning, and red. Now most of the times my good workouts happened on the weekend and so this problem wouldn't occur when the doctors were in. But this day was different. It was Friday. I was so excited that I got in my truck and drove to see the doctor. I thought that for once they would see my problem I real time and have an answer for me. When I got there, all I found was the receptionist and she said everyone went home at 12:00. Oh I was disappointed and upset. I explained my situation and she told me I could go down to the emergency room lab to give a urine sample. Anyway, after more then an hour I finally left a red urine sample and went home frustrated. The soonest appointment I got was more then a week later. When I met with the PA and asked what he thought of my urine sample, he said something and prescribed me a new blue pill.
I had the same red urine the weekend workout on Valentine's day. More then a week later I got to see the doctor this time. He comes in and says we have to do something about the blood in your urine. He said the urine sample (which looked clear by now) contained blood. Then he starts looking at my file on the computer and turns to me and says, "have we ever talked to that pathologist about your biopsy report." I remind him that he tried initially but the pathologist was on vacation and no further attempts were made that I remember. So he quickly tells me that I need to get a second biopsy done asap. And so it is scheduled for 3/12/15. Of course, I have said what that outcome was. And we are just about up to date.
So let me quickly vent. When the first biopsy says, "... diligent follow up is warranted." DON'T EXPECT YOUR DOCTORS TO BE DILIGENT!!!! You must be diligent!!! You are your own best doctor. Do your homework. Know your body. I will regret my lack of diligence from 9/14 thru 3/15 for hopefully years to come.
OK. I'm going to calm down now and relax before my surgery.
BTW, I haven't really said why I am having this operation. I'll have time to explain that while we wait for the pathology report.
MORE HISTORY:
OK, So we left off with the inconclusive results of the first biopsy.
Although I was upset with the results, I never really thought that I could have cancer anyway. I don't ever recall the doctor sitting down with me and saying, "Jerry, you know these problems you have been having could be symptoms of bladder cancer." And for whatever reason, I thought my problem was still in the prostate. Anyway, for what ever reason I never looked into bladder cancer myself. I choice I now regret. But I did not stop trying to help solve my urinary problems. And in hind sight this is where my anger comes.
It was the day after Christmas and I got up early and spent a beautiful morning in the mountains XC skiing. It was a good long, hard workout (at least for my age). I got home and cleaned up and about 1:00, I had to pee. I felt that sudden urgency that made me think-here we go again. And the urine came out slow, burning, and red. Now most of the times my good workouts happened on the weekend and so this problem wouldn't occur when the doctors were in. But this day was different. It was Friday. I was so excited that I got in my truck and drove to see the doctor. I thought that for once they would see my problem I real time and have an answer for me. When I got there, all I found was the receptionist and she said everyone went home at 12:00. Oh I was disappointed and upset. I explained my situation and she told me I could go down to the emergency room lab to give a urine sample. Anyway, after more then an hour I finally left a red urine sample and went home frustrated. The soonest appointment I got was more then a week later. When I met with the PA and asked what he thought of my urine sample, he said something and prescribed me a new blue pill.
I had the same red urine the weekend workout on Valentine's day. More then a week later I got to see the doctor this time. He comes in and says we have to do something about the blood in your urine. He said the urine sample (which looked clear by now) contained blood. Then he starts looking at my file on the computer and turns to me and says, "have we ever talked to that pathologist about your biopsy report." I remind him that he tried initially but the pathologist was on vacation and no further attempts were made that I remember. So he quickly tells me that I need to get a second biopsy done asap. And so it is scheduled for 3/12/15. Of course, I have said what that outcome was. And we are just about up to date.
So let me quickly vent. When the first biopsy says, "... diligent follow up is warranted." DON'T EXPECT YOUR DOCTORS TO BE DILIGENT!!!! You must be diligent!!! You are your own best doctor. Do your homework. Know your body. I will regret my lack of diligence from 9/14 thru 3/15 for hopefully years to come.
OK. I'm going to calm down now and relax before my surgery.
Saturday, April 18, 2015
More History
It seems to me that this history background stuff might be boring if it didn't happen to you. But it did happen to me. And how I got to this point, I hope may help somebody NOT get to this point, because my future doesn't look all blue skies and sunshine. So back to the history.
I really suck at remembering dates, but I looked up when my kidney stone was done and it was the last part of 2013. So I continue seeing the urologist because I continue having the same occasional problem urinating as I described earlier. They put me on Flowmax to shrink my prostate. My PSA continues to go up and down, but never a number high enough for alarm bells. They continue to find minor blood in my urine, but can find no bacteria to point to an infection. So I form a new theory that my problem is coming from my prostate. When I exercise, my big old prostate gets banged up and swells up causing my problem. The doctor doesn't buy my theory, but he doesn't have a clue either. He would like to do a cystoscope on me. This is where they shove a camera up your urethra. I tell the doctor that those two bottom orifices are one way streets and the camera would be going the wrong way. Growing up I remember my father telling a story of a doctor putting something up the end of his penis and saying it was the most painful thing he had ever did. The mental image of this process sent shivers thru my groin. But after a few more urinary episodes the doctor during a visit in September 2014 convinced me that the scope was the only way we were going to figure this out. He explained it and told me it would be done in 5 minutes.
OK men (or maybe ladies also) let me tell you how it is. You lay down on a table. They take some sort of syringe thing that is filled with a numbing gel and squirt it into the urethra and they also fill your bladder with saline solution. They say they need your bladder full. That does feel strange. You feel like you need to pee but you don't. They give you a moment or two and then they let you know it's coming. They tell you that you have to relax. They say if you tighten your groin or sphincter muscles, you will only make it worse. So man I tried to relax. I took deep breathes and tried to go to that nothing box in my brain. Yes, you can feel this thing being inserted in you. No, it is not at all painful. Is it uncomfortable - you bet! You can feel as it slides and rotates around. Let's just say that you are glad when it comes out. And it does only take maybe 5 minutes although I'm sure it did seem longer. BUT PLEASE DON'T BE AFRAID - GET IT DONE IF NEEDED. IT COULD SAVE YOUR LIFE!!
So we get done and I go back in and get dressed. The doctor comes in and says that he saw some spots in my bladder that concerned him. They were not big, but he thought they might be something that might lead to cancer, kind of pre cancer cells. Anyway, he wanted to do a biopsy and make sure. So on 9/18/14, I had my first biopsy. They put you out. I didn't feel a thing. Everything went great. I went home. Urinated blood for at least the rest of the day. I was in absolutely no pain thanks to some good pain meds.
The operation was on a Thursday and the doctor said he may have the pathology report late Friday or for sure Monday. Waiting for that report was difficult. I didn't get a call until Tuesday. When the doctor called I couldn't believe what I was hearing. The pathologist said that the results were "INCONCLUSIVE"!!! WHAT!!! How can that be??? Rather then wait to talk to the doctor in person, I went to the office and picked up a copy of the report for myself. I spent the rest of that day researching until I understood every damn word on that report. I won't get into the details. To be honest, it still upsets me when I read it. The bottom line is he said it looked like it could be or could become high grade carcinoma in situ (baby cancer). But he wouldn't say for sure. He said if the urologist felt differently about the report, then we should have another biopsy. Part of his last quote reads, ".... diligent clinical follow up is warranted."
I need to stop now. The story only gets better / worse and I tend to emotional when I retell it. I realize that I can't change what has happened. I have cried often and still do when I dwell to long here. But I so truly hope that by sharing this it may help someone avoid my outcome. I will try to continue the story tomorrow. I want to focus on the present asap.
I really suck at remembering dates, but I looked up when my kidney stone was done and it was the last part of 2013. So I continue seeing the urologist because I continue having the same occasional problem urinating as I described earlier. They put me on Flowmax to shrink my prostate. My PSA continues to go up and down, but never a number high enough for alarm bells. They continue to find minor blood in my urine, but can find no bacteria to point to an infection. So I form a new theory that my problem is coming from my prostate. When I exercise, my big old prostate gets banged up and swells up causing my problem. The doctor doesn't buy my theory, but he doesn't have a clue either. He would like to do a cystoscope on me. This is where they shove a camera up your urethra. I tell the doctor that those two bottom orifices are one way streets and the camera would be going the wrong way. Growing up I remember my father telling a story of a doctor putting something up the end of his penis and saying it was the most painful thing he had ever did. The mental image of this process sent shivers thru my groin. But after a few more urinary episodes the doctor during a visit in September 2014 convinced me that the scope was the only way we were going to figure this out. He explained it and told me it would be done in 5 minutes.
OK men (or maybe ladies also) let me tell you how it is. You lay down on a table. They take some sort of syringe thing that is filled with a numbing gel and squirt it into the urethra and they also fill your bladder with saline solution. They say they need your bladder full. That does feel strange. You feel like you need to pee but you don't. They give you a moment or two and then they let you know it's coming. They tell you that you have to relax. They say if you tighten your groin or sphincter muscles, you will only make it worse. So man I tried to relax. I took deep breathes and tried to go to that nothing box in my brain. Yes, you can feel this thing being inserted in you. No, it is not at all painful. Is it uncomfortable - you bet! You can feel as it slides and rotates around. Let's just say that you are glad when it comes out. And it does only take maybe 5 minutes although I'm sure it did seem longer. BUT PLEASE DON'T BE AFRAID - GET IT DONE IF NEEDED. IT COULD SAVE YOUR LIFE!!
So we get done and I go back in and get dressed. The doctor comes in and says that he saw some spots in my bladder that concerned him. They were not big, but he thought they might be something that might lead to cancer, kind of pre cancer cells. Anyway, he wanted to do a biopsy and make sure. So on 9/18/14, I had my first biopsy. They put you out. I didn't feel a thing. Everything went great. I went home. Urinated blood for at least the rest of the day. I was in absolutely no pain thanks to some good pain meds.
The operation was on a Thursday and the doctor said he may have the pathology report late Friday or for sure Monday. Waiting for that report was difficult. I didn't get a call until Tuesday. When the doctor called I couldn't believe what I was hearing. The pathologist said that the results were "INCONCLUSIVE"!!! WHAT!!! How can that be??? Rather then wait to talk to the doctor in person, I went to the office and picked up a copy of the report for myself. I spent the rest of that day researching until I understood every damn word on that report. I won't get into the details. To be honest, it still upsets me when I read it. The bottom line is he said it looked like it could be or could become high grade carcinoma in situ (baby cancer). But he wouldn't say for sure. He said if the urologist felt differently about the report, then we should have another biopsy. Part of his last quote reads, ".... diligent clinical follow up is warranted."
I need to stop now. The story only gets better / worse and I tend to emotional when I retell it. I realize that I can't change what has happened. I have cried often and still do when I dwell to long here. But I so truly hope that by sharing this it may help someone avoid my outcome. I will try to continue the story tomorrow. I want to focus on the present asap.
Friday, April 17, 2015
One Month
So it's been 1 month (3/17/15) since I sat down and was told the results of the pathology report.
Went to see an oncologist in Salt Lake this morning. Talked about why or why not I wouldn't have chemo prior to any surgery. And the 2 main types of chemo that would be used if I choose to have chemo prior to surgery. He stated that having chemo prior increases your chance of survival about 5%. So when you are looking at 50% survival rate, some people think that it is just not worth putting your body through that ordeal for 5%. Every doctor I've seen brings up the 50% thing - ya I get it. Anyway, we had a good talk for about an hour.
History Part 2 -
Let's continue from last night. So at what point does a man finally say, "Hey, I'm tired of dealing with this pain. I think I'll see a doctor!" Well for me it took years. A woman might say that there is an inverse correlation between the time it takes a man to see a doctor about a problem and his intelligence. I might be a case study for that theory.
Anyway, I was convinced that this problem is caused by a kidney stone. I figured that when I exercised the stone would sometimes move around and settle in an area that restricted the urine flow and the irritation resulted in some blood. So I call the urologist and talk to the PA on the phone and told him that I think I have a kidney stone and he arranges for me to have an x-ray before I see him. Well, you will never guess. I had a flipping stone. I think I'm a genius - at least for a while. So I visit with the PA and he gives me a prostate check (older men will know this procedure). He informs me that my prostate is very enlarged and I had a high PSA and that is where he thinks my problem lies. And the blood is likely the result of an infection.
Well, I had the stone blasted. The operation was fine. The recovery was awful. Once at home I got an upset stomach. Couldn't keep the pain pills down. Pain went to a 9 on a 10 scale. Went to the emergency room. They IV drugged me (that felt good) and told me I couldn't leave until I urinated for them. I finally had the urge so they led me to the bathroom and gave me a cup for a urine sample. Well I had a dilemma, I needed one hand to push aside the gown and the other hand to hold the cup and the other hand to hold......you get the point. And I need to mention that nobody told me what my urine would look like after this procedure. So here's this guy high on meds, trying to hold 3 things with 2 hands and all of sudden pure blood comes squirting out of my penis. Well, I freaked out, jumped up and let loose of everything and made a mess in the bathroom. Once finished, I calmly gathered myself, left the bathroom and informed the staff that there was a little mess in the bathroom.
Well, that's enough for tonight. I'll get to the first biopsy tomorrow.
Goodnight.
Went to see an oncologist in Salt Lake this morning. Talked about why or why not I wouldn't have chemo prior to any surgery. And the 2 main types of chemo that would be used if I choose to have chemo prior to surgery. He stated that having chemo prior increases your chance of survival about 5%. So when you are looking at 50% survival rate, some people think that it is just not worth putting your body through that ordeal for 5%. Every doctor I've seen brings up the 50% thing - ya I get it. Anyway, we had a good talk for about an hour.
History Part 2 -
Let's continue from last night. So at what point does a man finally say, "Hey, I'm tired of dealing with this pain. I think I'll see a doctor!" Well for me it took years. A woman might say that there is an inverse correlation between the time it takes a man to see a doctor about a problem and his intelligence. I might be a case study for that theory.
Anyway, I was convinced that this problem is caused by a kidney stone. I figured that when I exercised the stone would sometimes move around and settle in an area that restricted the urine flow and the irritation resulted in some blood. So I call the urologist and talk to the PA on the phone and told him that I think I have a kidney stone and he arranges for me to have an x-ray before I see him. Well, you will never guess. I had a flipping stone. I think I'm a genius - at least for a while. So I visit with the PA and he gives me a prostate check (older men will know this procedure). He informs me that my prostate is very enlarged and I had a high PSA and that is where he thinks my problem lies. And the blood is likely the result of an infection.
Well, I had the stone blasted. The operation was fine. The recovery was awful. Once at home I got an upset stomach. Couldn't keep the pain pills down. Pain went to a 9 on a 10 scale. Went to the emergency room. They IV drugged me (that felt good) and told me I couldn't leave until I urinated for them. I finally had the urge so they led me to the bathroom and gave me a cup for a urine sample. Well I had a dilemma, I needed one hand to push aside the gown and the other hand to hold the cup and the other hand to hold......you get the point. And I need to mention that nobody told me what my urine would look like after this procedure. So here's this guy high on meds, trying to hold 3 things with 2 hands and all of sudden pure blood comes squirting out of my penis. Well, I freaked out, jumped up and let loose of everything and made a mess in the bathroom. Once finished, I calmly gathered myself, left the bathroom and informed the staff that there was a little mess in the bathroom.
Well, that's enough for tonight. I'll get to the first biopsy tomorrow.
Goodnight.
Thursday, April 16, 2015
Where to start........
Leader - Hi and welcome to BCA or Bladder Cancer Anonymous. Do we have any new people joining us tonight?
Jerry - Hi, my name is Jerry and I have stage 2B muscle invasive bladder cancer and it's been 2 days since I've seen my last doctor.
Group - Welcome Jerry!
OK, enough of the AA satire. But there you have it. I wanted to start a blog for a few reasons. First, I want to journal this unexpected journey I am about to travel. From the day the doctor informed me of this condition, I knew a new life was just beginning - My new reality. Second, I wanted a way that I could share this journey with family and friends. And third and most important, I wanted a way to share my experience in the hope that it might help prevent someone from unfortunately taking this journey. Or if someone should find themselves on this path, I hope I can share some knowledge on what I've learned, mistakes I have or will make, and experiences of what they might expect to encounter. I hope to be brutally honest and truthful.
So let's get started....
I was told of my bladder cancer on 3/17/15. I had my 2nd bladder biopsy on 3/12/15. I had my 1st bladder biopsy on.... You know this seems boring, but if I am going to help anyone out there avoid this I need to start at the real beginning. But I don't want to do this history crap all at once because it will put both you and I asleep. So how about I give a little history each day. And if any of this history sounds familiar - run - don't walk - to your nearest urologist!!!!
History Lesson 1 -
Like most men, I can avoid going to a doctor over a little body pain that comes and goes for years. And so for maybe 5-10 years I would have these episodes where I would have trouble urinating. These episodes would last for about 1-2 days and would many times happen after I had a strenuous workout - but not always. They would happen maybe once every couple of months. And I would know it was starting when I would get a sudden urge that I needed to urinate NOW. So I would run to the bathroom and hopefully make it in time to feel this burning sensation as the urine slowly expelled itself in an amount of a couple ounces. And then within 30 mins., I'd have to go again with the same result. And sometimes, but not always, there would be the slight presence of blood. I thought I was curing this condition by drinking lots of cranberry juice and water. And usually by the next morning everything was fine.
Well enough with history for tonight, I have an 8:00 appointment with an IHC (my healthcare provider) oncologist in Salt Lake tomorrow morn. That means an early rise for a 2 hr drive.
Goodnight.
Jerry - Hi, my name is Jerry and I have stage 2B muscle invasive bladder cancer and it's been 2 days since I've seen my last doctor.
Group - Welcome Jerry!
OK, enough of the AA satire. But there you have it. I wanted to start a blog for a few reasons. First, I want to journal this unexpected journey I am about to travel. From the day the doctor informed me of this condition, I knew a new life was just beginning - My new reality. Second, I wanted a way that I could share this journey with family and friends. And third and most important, I wanted a way to share my experience in the hope that it might help prevent someone from unfortunately taking this journey. Or if someone should find themselves on this path, I hope I can share some knowledge on what I've learned, mistakes I have or will make, and experiences of what they might expect to encounter. I hope to be brutally honest and truthful.
So let's get started....
I was told of my bladder cancer on 3/17/15. I had my 2nd bladder biopsy on 3/12/15. I had my 1st bladder biopsy on.... You know this seems boring, but if I am going to help anyone out there avoid this I need to start at the real beginning. But I don't want to do this history crap all at once because it will put both you and I asleep. So how about I give a little history each day. And if any of this history sounds familiar - run - don't walk - to your nearest urologist!!!!
History Lesson 1 -
Like most men, I can avoid going to a doctor over a little body pain that comes and goes for years. And so for maybe 5-10 years I would have these episodes where I would have trouble urinating. These episodes would last for about 1-2 days and would many times happen after I had a strenuous workout - but not always. They would happen maybe once every couple of months. And I would know it was starting when I would get a sudden urge that I needed to urinate NOW. So I would run to the bathroom and hopefully make it in time to feel this burning sensation as the urine slowly expelled itself in an amount of a couple ounces. And then within 30 mins., I'd have to go again with the same result. And sometimes, but not always, there would be the slight presence of blood. I thought I was curing this condition by drinking lots of cranberry juice and water. And usually by the next morning everything was fine.
Well enough with history for tonight, I have an 8:00 appointment with an IHC (my healthcare provider) oncologist in Salt Lake tomorrow morn. That means an early rise for a 2 hr drive.
Goodnight.
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