It's been quite a journey so far. I think I'm going to close this chapter that ended with the operation. Fun things continue to pop up, mostly catheter removals and re-insertions (3!), and on going digestive problems. The catheter is gone! My continence is more or less intact, and erections remain to be seen or dealt with. But I survived. I may start this up again if there are any more unforeseen developments and I will definitely crank it up again once my radiation treatments start. It's my public service duty!
Mostly, the response I have received to this blog has been wonderful. It kept me going in many ways, and it was great therapy for me to write this stuff down. It really was a crazy road I went on and if anyone out there has to do the same at some point in their lives, I hope this will have been of some help. Realistically, I don't think I was the normal case. If I had a nickle for every time a doctor or a nurse said - "It's not uncommon for this to occur, but it's not the normal reaction", I'd be a rich man.Very rich.
I have learned so much in the last couple of months! Some good things and some unsettling things, but it's been quite an education.
A few people found the descriptions too detailed and graphic. Well...it is reality. Unfortunately, practically every issue that popped up was about the penis, bowels, rectum, gas, constipation, bloody urine, erections (and lack thereof) etc......,. But again, that's the reality of prostate surgery. It ain't pretty. Just be glad I didn't write about the day I woke up with a horrifically swollen and disgustingly discolored penis! This phenomenon occurred on a weekend so I had to describe all of this to an advice nurse - "My...that is interesting. I'll call the urologist that's on-call and call you back."
She did, and by luck of the draw it happened to be my urologist! His reply was - "Tell Mr. Ray that this is completely normal, and to not be surprised if it moves down to the scrotum, and that there is no need to take any Valium!". This was special in many ways. I guess it is well known throughout my whole medical organization that I'm a very stressful patient and need to take Valium "as needed". Great. It also would have been nice to have gotten a...heads-up....on the brutalized pecker syndrome. Oops, another graphic story has leaked out!
I have learned that I must be a terrible patient! I swore I was going to be a good one, but failed miserably. My pain tolerance is way lower than I thought it was going to be. I hurt like a mofo! Not from the incisions (I actually only took one Darvocette once we got home), but the stomach cramping, the gas, the constipation and the freaked out bladder were mighty painful. I literally chewed on towels in the bathroom and broke down in tears many times. Then my hyper-stress would kick in and I was a goner. This resulted in many e-mails and calls to my doctor and/or advice nurses. I know I have been through a lot, but while not uncommon, I don't think this was the norm. Stacey hesitated in telling me this, but during our first meeting with the surgeon, he asked me what I thought my pain tolerance was. I told him I thought it was pretty high. At that point, he made eye contact with Stacey and she was shaking her head (out of my line of vision), wordlessly telling him the opposite. She was dead on. Of course.
Nurses are truly a gift to mankind. Doctors get the spotlight and try to cure you, but it's the nurses that can actually help heal you. I love them all. They are empathetic and helpful. They are calming and nice. They all need a raise, which brings up one of the most stunning discoveries I made in the 2 days I spent in the hospital. Due to our current economic woes, there could be a whole lot fewer of them to help patients like me, in need of their comforting and helpful presence and skills.
I actually saw in real-time people's jobs get axed. A young woman made an appointment with Stacey and I to train us on catheter care at home. A few hours after we made the appointment, she called and told us that her job had been eliminated! Not to worry, though - the nurses were more than qualified to teach us, (which they were). Yikes! Several nurses were a bit edgy, wondering if they would be subject to lay-offs that were happening at other hospitals. We saw a room (many times during the 24 hour fart-march) of abandoned equipment with the words "Does Not Work" scrawled on them. Bottom line - less people working means less people with medical insurance. Less people with medical insurance = less people going to doctors and medical centers for treatment and care. I am not smart enough to have any sort of answers for this, but something is very wrong here. These are folks that can cure, heal, take care and comfort us, and now there are fewer of them. It's very basic. Something has to change.
But the most important thing I have learned through all of this, is that love and support are the things that really heal you. I have been blessed with the most wonderful wife in the universe. If it wasn't for Stacey I would probably still be in the hospital trying to pass that damned gas. She has been there every step of the way, from changing my catheter bag to listening to me fall apart. She "talked" our cat into a state of unprecedented good behavior. She missed a lot of work, and always got me to the doctor's office, the hospital and even the Emergency Room on time. She never complained about by foul moods and anxiety. But the thing that really blows me away is this: She's still here.
My brother and sister had my back on all of this, from getting free second opinions from one of the foremost medical centers in the world, to actually checking out the robot that sliced and diced me. They stayed positive, they listened and they encouraged. One of the most important things they did was to convince me to not feel guilty about putting Stacey through all of this by simply stating: "That's what people in a good marriage do."
I am still overwhelmed about the love and good thoughts I got from friends, close and distant. The generosity that has been sent my way has been unbelievable. I feel like I'm the luckiest man in the world. My heart has been enriched, and ultimately that is the thing that will heal me.
Love. Plain and simple.
I am humbled. We will kick this cancer's ass.