Friday, March 9, 2012

Another Six Months

It's only a routine six-month checkup; ultrasound the kidneys and x-ray the chest; check the blood and urine; then meet with the surgeon/urologist to discuss the results. Why am I so nervous? Why am I scared?

I'll admit it; I'm neurotic. The x-ray tech keeps me for a second set of chest x-rays and when I leave she says; "Good Luck." What does she know? What did she see? The ultrasound takes about 20 minutes with full bladder and another 10 minutes with empty. Did she also see something? I've seen the results of my blood tests and my kidney function indicators are still out of spec. I've had some pain in my back on the left side - the side of the kidney that was having problems a year ago. This could be muscle strain from a recent fall or an after effect of the train trip we just took to Arizona and back. But it is a pain where that kidney is located (I've learned this location from past surgical procedures. )

Good News!

So my wife and I wait in the doctor's office for him to come in and give us the results. She thinks I'm silly to be worried. The surgeon enters with a big smile and he says; "Everything looks good." I was silly to be worried. I'm doing just fine and there's nothing to worry about. There is no sign of cancer cells in the urine and no sign of cancer anywhere else. Oh, what a relief!!


But I don't let him off that easily. What about the back pain? What about the elevated creatinin? What about my left kidney? So he sits down at the computer and says; "let me show you what's going on." We look at the scan of the right kidney (normal) and then the left kidney (which shows a large dark spot that he says is the swelling that is still present). He then brings up the scan from 6 months ago which looks pretty much the same - and the same as the scan from after the stent and the breaking of the scar tissue that was blocking flow from the left kidney at the ureter connection to the neo-bladder. This is evidence that damage has been done to that kidney and, even after flow was restored, the kidney has not been able to recover. He says that kidneys don't like having their flow blocked (either this way or by kidney stones lodging in the ureter) and the damage can be permanent.

He went on to say that my blood tests have shown no significant changes in kidney function since this blockage was removed. This means the right kidney is working just fine and is probably doing all the work - which it is perfectly capable of doing and many people live long and healthy lives with only one kidney.

"Could this damage have been caused by chemo?" I know chemo can be hard on kidneys and I have been thinking about whether it was the wisest decision to opt for chemo when it wasn't absolutely necessary (this is called prophylactic chemo). He said; "No, this was definitely caused by an undiagnosed blockage from the formation of scar tissue after the surgery." And this isn't the first time he has told us this but, you know, it takes a while to accept. But it's starting to sink in to my thick skull. I only have one kidney. Live with it.

"Could the scar tissue have re-formed and that blockage still causing problems?" That's certainly possible but not likely since the levels (kidney function indicators) in your blood did not change when we had the stent in place and there was maximum flow from that kidney (they used a die marker to check for flow both before and after the stent which showed the flow was blocked before and full flow was restored by the procedure). And the levels have not changed since the stent was removed. If the pain persists they may try the stent again and if that relieves the pain they may remove that kidney.

"So what happens if the other kidney fails?" He assures me that I'm in very good shape and the right kidney is functioning just fine and there's no reason to believe it will not continue to do so. My current levels have been constant and they should be considered to be my new normal.

"Can I keep the neo-bladder with only one functioning kidney?" I remember him hinting - in past discussions - that they don't like to have a neo-bladder where there is only one kidney. He said if we start seeing problems with the remaining kidney they may want to try a catheter for a while to remove any restrictions to flow.  And if that works, they will probably want to remove the neo-bladder.

"What about transplants?" They won't transplant when you have one functioning kidney. They also require a certain number of years cancer-free before transplant. Again, he says, this is such a remote possibility and so far down the road that I shouldn't be worried about it now. I am doing great and all indications are that I will continue to do fine.

He asks me how I am managing with the neo-bladder. Am I still having trouble at night? How am I during the day? I have always been fine in the daytime and I am constantly getting better at night. Still a little leakage but not more than a "maxi-pad" can handle. I get up a couple times at night but usually there's not much to go.  

"Is it alright to really bear down - will this cause reflux up into the kidneys?"

So, he says he will be contacting me in another six months to come in for tests. Then they will probably just call me with the results.  I'm doing just great and keep up the good work - or something like that.

It's all good.

On feedback.

I've been doing this blog for a year and a half. It's the first blog I have ever done so it's been a learning experience for me; in and of itself.  I have looked at blogging as a tool to help me work out issues and organize thoughts. When I sit down to write I don't think of any particular audience to whom I may be writing - I'm not writing to anyone in particular. When you write to someone in a letter, email, or Facebook message, you have to temper your words and thoughts so that they don't offend, or confuse, or make them think you've gone crazy (or off the deep end.)  So, in this Blog, I write to (and for) myself.

Well, if that were true I'd just keep a journal and not publish this blog. So, yes I do think of other people reading this (at least in some point in the process). I don't really believe anyone would read it, however, because there are just so many words being written these days that I can't imagine anyone having the time or the interest in reading mine. Everyone, it seems, has something important to say. I do, in fact,  temper my words in case someone who knows me stumbles across this. And there are some subjects I don't talk about in case my nieces or nephews (or grand kids) may read it. I know, at this point in my life, why should I care what other people think about me? But I do.

This troubles me a little because I think it detracts from the value of the blog. I am getting better and I continue to strive to improve. I no longer worry about turning off prospective employers or alienating prospective constituencies (I am growing more comfortable with retirement and have never aspired to public office). So to these I say; "really, what's it to ya".

Actually, the closest analogy I can think of is that, in blogging, we feel as an actor on a proscenium stage with the audience behind the Fourth wall. This works on my head in a couple ways: The audience is 'hidden' - at least from my consciousness - which is freeing (but I still know that there is an audience and that it's my job to keep them interested - give them they're 'money's worth'. But it also means that I have no way of knowing if the theater is empty and I'm just writing to hear my own voice. This also plays with my head ( I have to admit).

Enter the 'comment'. Up until now I have pretty much ignored the comment field in this blog. I have received feedback both by phone and by email (and in person) and most of it has been very positive and supportive. Many people have told me that they find the process of posting a comment both confusing and non-intuitive and most have just given up. My curiosity has finally gotten the best of me and I tried to comment (actually post a comment to respond to a comment to one of my blogs). I couldn't make it work at first and after a couple days of trying, and looking at other sites, I changed the settings to open a pop-up window for the entry of the comment. Now if you have a Gmail account (at least) you can post a comment as someone other than 'anonymous'.

I like comments and other feedback to my site. So far I don't think it's affected my primary mission in keeping this blog. When and if you decide to comment please know that my ego is rather fragile so please be kind.

Also, I do have this blog configured to send me all comments so that I can screen them before posting (via email). So if you want to contact me without posting just write a comment and note that it is private and you don't want it posted to the blog.