The Final Chapter

 I feel that there are times in life when it is good to sit and reflect on the past. On August 26, 2015, Dr. Danashmund performed a radical cystectomy and manufactured a neobladder replacement for my cancerous bladder. And that day was truly a new beginning.  

So why do I choose to reflect now? Because for an unknown reason to me, when the medical community stages the progression of your cancer at the time of diagnosis, they also advise you on the probability of you being able to live past the next 5 years. And I was told that my probability was 50 / 50.  The way I choose to think about this was that's better odds then you would ever find in Vegas. And so - it has now been 5 years and I am still here. And so I am going to reflect and I have been trying to organize my thoughts so this makes sense. 

What a journey. I don't know how you make sense of life, but I choose to believe that there was someone guiding me along this journey. There were decisions that had to be made that would have changed the way I would function on a daily basis. Thinking back on how I struggled to make these decisions that I hoped no one would never have to. But here I am - Life is good - God is good. But this experience has also saddened me and made me wonder why do others not recover successfully? Why do others die? I will never forget the story of one person in particular. I had a classmate named Mary Blasius Hicks. We had met up later thru Facebook. Mary was probably diagnosed with cancer about the same time frame as me. And in late 2015, Mary was going to loose her leg to cancer and I feel that her diagnosis was not looking good for her at this time. I believe the cancer was also devastating her financially because I noticed she had started a go fund me page called "Mary's End Of Life Bucket List." When I read her list, I remember that she only wanted to fly home to visit her family one last time. That never happened. In January 2016, Mary died. This hit me hard then and still does. You see, during this same time, I was improving. Life was getting better and almost normal. Life was sweet, but in the back of my mind was Mary. 

And now it's 2020 and I am so thankful for the life I am blessed with. I am so damn lucky. My new normal isn't that much different from my old normal. There are a few - what I call - negative minor changes from the surgery that I deal with. The first is of a sexual nature. The surgery causes nerve damage and can leave a man impotent and I appear to be a casualty. The other major side effect of the surgery is incontinency. In this, I have been very lucky. Probably my problem is more self-inflicted. During the daytime hours I am 100% continent. At nighttime, you are advised to stop drinking liquids a few hours before bedtime. But not me!! I've been drinking a big whiskey and coke before bed for the last 30 some years and cancer wasn't going to rob that pleasure from me. Now this isn't a big thing, but once a month or so I might wet myself a little, but then there are those 2-3 times a year bed soakings. You know neither of these two situations upset me. I AM ALIVE! I won't let these situations define who I can be in this new life I have been blessed to have.

Being a bladder cancer survivor has also affected me as a person. And I am at peace with these changes also. 

I have become very aware of how the health system works and the inequity of this system. I was fortunate to have the education, time, and financial means to be able to educate myself on exactly what was happening to my body, what treatments were available, how they would affect me, and the best doctors to treat me. This is soooo important, because the health care system may not always offer you what is best or what you need.    

I have discovered that for me, being human must include having compassion and empathy for those humans who find themselves in dire straits. I left one doctor because I just didn't feel he was showing me any compassion for my situation. Sometimes we just want someone to acknowledge that what you are going through is tough and sucks. 

I have learned to not let things that I can't control, control me. This wasn't always the case, but my life become more peaceful when I choose to let go of negative feelings of situations I have no ability to change. And the flip side of this, the negative feelings I have for situations I do have some control over, I need to take action to change. Having cancer gives you lots of opportunities to experience both of these situations. 

Gratitude - I can't imagine anyone surviving cancer and not feeling extremely grateful. From doctors, nurses, hospital staff, family, and friends who aided me in each of their own special ways. A big thank you to Barbara, Dean, and especially my sister Cheryl, I would not have been able to take the journey I did without your help. 

I suppose one can't be diagnosed with cancer and not contemplate your mortality. Of course the same may hold true if you have had a stroke or heart attack. And I have had the good fortune to have experienced and survived (virtually unscathed) all three. So I have contemplated my mortality a few times. Let's just say I have had a life blessed beyond what I could have dreamed. I have had such good fortune and the help of so many - I am by no means a self made man. 

Faith in God. Again, I don't think one could absolutely fully recover from a stroke, heart attack, and cancer and not feel that someone Devine must be watching over them. Of course sometimes going through these experiences might bring up more questions then answers about God. Like the Mary question - Why do some live and some die? Why are some people's outcomes worse then others? Why have you blessed me with so much? I don't wear my religion like a shining light. And most people would think me a damn good sinner. But maybe trying to practice what I feel Christ was trying to teach - like being grateful, showing compassion, helping those in need, showing kindness to all, and simply treating others as you would have done to you - might be a pretty good way to live in the time we have left.  

The End - for now.

New Beginning Started

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.

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.

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.

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.

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.

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.