Radical Cystectomy with Creation of a Neobladder via Ureteralileostomy
Toward the end of my enlistment with the Air Force, all six years of which I spent at Travis Air Force Base, California, I was showing signs of an illness. During my discharge medical exam the doctor, a full bird colonel, said my fingernails showed signs of clubbing, and he wanted to keep me there to run tests. I told him, more out of an extremely impatient desire to get out of uniform than any sort of application of wisdom, I’d let the Veteran’s Administration medical people deal with whatever it was. He looked at me doubtfully, but couldn’t really argue. It may have been a bad decision, I don’t know. I’d spent my entire enlistment at this one base (so much for joining the military and seeing the world), and it truly was working on my last nerve to stay a day longer. And, with a shrug I departed.
Troubles with the VA
A little over a year after, not to be unpleasant (which with this subject is probably difficult to avoid) the only real symptom (aside from the fingernails) that I had was urine that wasn’t the right color and didn’t smell quite right. My wife remarked about that. The thing was, the VA at this time was the old, miserable VA before Senator Bernie Sanders’ push to force it to improve. And, it was before the Affordable Care Act, so using the VA was problematic, and they were also struggling with what load they had with actual combat casualties from Desert Storm, and later Iraq and Afghanistan. So, the only health care I had other than to add to the burden of that overloaded system was through my wife’s employment’s Health Management Organization (HMO).
"There's not wrong with you"
The thing about the HMO was, they kept doing this simple set of tests, and saying, “There’s nothing wrong with you. My weight eventually went down to 135 pounds, and even so they kept saying the same thing. When I mentioned that for six foot five that weight was shockingly low, the doctor said, “It’s normal. You weighed that much last time.” Not being fit for work due to a serious lung ailment obtained from exposure to toluene and acetone on a work site, resulted in a drop in physical activity creating a set of conditions which at the time the HMO didn’t diagnose. Still, in the “best medical system in the world” I kept getting the same story. “There’s nothing wrong with you.” Eleven doctors later, and thirteen years, one doctor at the HMO took my wife aside and spoke to her in Spanish, telling her they were only allowed to see patients for five minutes. Any longer, and they’d have to make a special application to recieve funding.
Finally getting the necessary testing
Thirteen doctors later and to my great surprise, the HMO decided to run a deeper set of tests. Instead of one vial of blood, they took six! Also, a full body set of X-rays was ordered. When the results of the tests were due, I was told I’d have to start all over because the results were lost, along with all my other records. It was then I demanded the payments to the HMO be stopped. There was no point in their being paid $300 a month to do nothing. My better half argued against it, but I was adamant. And so I no longer had health care. But, who cares, they wouldn’t do anything but take money and shrug at me anyway. At least I’m not having to make the arduous journeys and sit in the waiting rooms for ages just to see the shrug.
The clots just wouldn't stop
Well, a few months after that I began urinating clotted blood. It was very shocking to see, and odd as well as it wasn’t the typical blood in the urine you hear about. It was clotted like it had come through a tiny tube of some sort. I won’t belabor the story about my spiritual disciplines and why these allow me not to fear my possible death. Suffice to say, seeing things take this turn didn’t upset me as it apparently would most folks, come to find out later. This went on for two and a half years; couple of days “normal” urine, couple of days this clotted blood. Then, one Thanksgiving eve, my urethra became clogged. So, I took what recourse I had available and went to the nearest VA medical facility emergency room. For the first time in all these years, a scan is run on me. They do other tests. By then, I am passing pure blood with no urine discernible.
"We're admitting you"
“We’re going to admit him,” the doctor in charge told my better half. They began a blood infusion which lasted three days. Then, the exploratory surgery through a Foley catheter, and a diagnosis of bladder cancer. The VA urologist actually freaked and didn’t finish her work. I don’t know what she expected to happen, but she left things as they were, and I was passed onto an oncologist. This guy looked at my scans, then told my family right there in his office, “He has stage four lung cancer. We can treat him, but I don’t expect that will last any longer than eight or ten months. My stepson, the theoretical physicist, asked this doctor, “Is there anything organic he can take to alleviate the side effects of the chemotherapy?” This doctor looked him dead in the eye and said, “No.” Anyway….
Grateful for Community Care
Fortunately, thanks to the efforts of Senator Bernie Sanders (I) of Vermont, the VA has what is called Community Care. I qualified for this because of the driving time to this VA facility. At Memorial Cancer Institute I found an oncologist who is young, and sharp. Firstly, he was dubious about this “stage four lung cancer” call, and scheduled me for a biopsy. “Let’s be sure you have it before we treat it.” Secondly, he insisted I see a particular urologist, who (fortunately for me) is a leader in this field. Someone once said, “By the time somebody says ‘to make a long story short’ it’s already too late.” Suffice to say these two doctors got to the bottom of the problem. The urologist finished the initial surgery doing a remarkable job, clearing the bladder and all its attached plumbing sufficiently to get a good look at what was going on. He literally cleared all what was inside the bladder itself. Unfortunately, that wasn’t good enough, and it would be necessary to remove the bladder, and in my case the prostate gland as well, to make sure the cancer hadn’t metastasized.
Neobladder was the way forward
My oncologist, of whom I am very proud, determined I didn’t have lung cancer at all, but I did indeed have stage four bladder cancer. He set me up on a chemo schedule, after which there would be the surgery to remove the bladder and prostate. A further determination would be made as to the efficacy of the chemo and we would go from there. I opted for the neo-bladder. I had walked around sporting a Foley catheter for a few weeks, with bags and tubes and I was pretty much burnt on that as a way of life. Although, but for one thing which I do miss now, but not enough to wish I’d taken the other route. With that Foley, I didn’t worry about urinating, or trying to empty the neo-bladder. All I had to do was empty a bag. It was very relaxing. However, the idea of a tube permanently sticking out my back, and the attendant maintenance, and possibility for infection that situation held far out weighed what I’d humorously call the lazy approach.
"What are the odds of it working?"
I asked my urologist about this procedure and what were the odds of it working. He said, “Seventy-five percent.” I thought, that’s better than Vegas odds. Let’s do it. Now, after two and a half years, I am cancer free. As my urologist put it, “You’re cured!” I’m at the every six months a scan and checkup point. After my next visit this will become annual. And, thus far, cancer free. Naturally, I am quite pleased with the outcome. The chemo wasn’t so severe that my hair fell out. My hair is down to my waist, so that would have been quite a loss for me. Although, it did get a bit thinner. As a male, thinning hair has the potential for a rolling crisis! Naturally! However, it’s thickened back up, at least as well as can be expected for a now 67 year old.
Was the water to blame?
I do have to use catheters to empty the neo-bladder. The VA is providing these. There’s some trepidation there, as the U.S. government hasn’t shown itself to be the most constant organizations. However, Travis AFB has been proved to have had seriously adulterated drinking water to which I was exposed for six years. Fortunately, my family was using bottled water at home. We had the large cooler in the kitchen with the huge upside-down water bottle atop it. None of them have shown any signs of any problems, so they may have dodged a bullet. Yet, because the Department of Defense has conceded airmen at that base during the period of time I was there did develop bladder cancer, and the Department of Justice has ordered them to provide treatment at no cost through the VA, I do have some recourse should the supply of the required catheters be threatened in any way. Still, it’s not something that inspires confidence.
“Feel lucky. You could be dead”
So, now, the upshot with the neo-bladder; what my days and nights are like with it. No, there’s no normal to go back to. It’s very much a matter of reminding myself, and quite frequently, “Feel lucky. You could be dead.” I have to wear the absorbent, paper undies when I sleep. They aren’t outrageously uncomfortable, but sleeping in my altogether will never happen again. One thing not to dwell upon. I have to empty the bladder every four hours. Letting it fill too much, from what I’m told, will stretch it out. Getting a solid eight hours sleep is, therefore, rare. There’s a mucous build up in the bladder, bearing in mind it is part the intestine and behaves like that, so the urine in it causes it to react this way. This mucous will involuntarily discharge itself. And, if I drift off and relax without my paper undies on, then I have to change my clothes.
Which also means, after a restful sleep, I’ll find mucous collected around my privates which requires me to shower immediately. If it’s in the middle of the night, I then need a new pair of the undies. This gets into the consumption rate of those. An additional problem I have is, no it wasn’t lung cancer, but it was emphysema. My pulmonary guy says I have a 29% lung capacity, so doing things like taking showers is very difficult for me. (I’ve got three inhalers I have to use.) So, I have a little chair under my shower where I can sit. I have the shower head on the long hose dealy, so it’s hand held, making that job just a bit easier. But, for me, all of this requires a certain amount of effort and attention during the days and nights. I’ve become accustomed to it, but as with all such things, it will try my patience at times. Something with which to contend; be calm, be patient, don’t bother with anger. It doesn’t help anyway, and it’s a certain two steps back. But, though it’s rare, it’s there, so be advised. I don’t let it get to me. How will I manage this when I’m eighty? I’ll know that when I get there.
I do use small pads with an adhesive in my underwear when I leave the house. I’ve also found a smaller, practically designed catheter that’s easy to dispose of, for when I am out of the house in a public environment. I always have to carry things with me, because one never knows if something might happen to complicate matters. Better safe than sorry? Yup. I’m not going to get into what not having the prostate entails, as that’s a very subjective thing to consider. A lot of the effect of that alteration would depend entirely on what sort of person someone might have been before. I’ve never been a very carnal person. I’m very much an intellectual, and an adept spiritualist. I’m a novelist, so none of this has impacted my productivity. In fact, I’ve gotten two books finished since that first Thanksgiving eve at the ER.
So…that’s my story and I’m stickin’ to it!
Help others feel a little less alone
How well does your healthcare provider understand your bladder cancer?