Just Another Day

Just another day

When I got home from work the other day, my wife asked me if I'd been thinking about this day. My heart stopped for an instant as I scanned my memory for something I'd missed: anniversary, birthday, valentines day, sweetest day? No, none of those. Then she said that it has been three years since my surgery. Hmm, so it has. How about that. It seems like so much longer ago than that. 

What an amazing and miraculous thing that was. Not only did that surgery save my life but it gave my life back to me to the extent that such a day has become just another day. Isn't life great!

PS. I do remember the Thanksgiving Day following that surgery. When my family gathered that year we had so much to be thankful for. I will remember that day again when we gather this year - right along with all the other days that we've had together - and give thanks. 

Good news

Blood test results: 

My last visit with my urologist he removed the nephrostomy and informed me that my left kidney had - for all practical purposes - shut down. I expressed deep concern for the welfare of my remaining good kidney and since he shared this concern, he scheduled me for monthly blood tests to assure that my levels (creatinine, pH, Sodium, Phosphate, etc.) remain stable and withing acceptable ranges.

The first of these tests - last week - confirmed that all levels are stable. My creatinine has dropped from 2.5 to 2.3 (the lowest it's been for a year). My urologist calls this stable. When my level rose to 2.5 he was quick to point out that a one or two point change is not significant and could just be 'noise'. But I take this as significant in that the 'noise' has gone down and not up.

A deep sigh of relieve can be heard all throughout our household.

On Powerlessness and Power.

The Serenity Prayer comes to mind.

Maybe it's a logical side effect of coming out the other end of a personal trial (like cancer, loss of a loved one, tragedy (personal or witnessed), or other loss) is to feel a loss of power over our world - our existence- and to try to take some of it back.

I retired 5 years ago. This summer I volunteered to help out a friend; to cover for him at his job while he went out of town for a month. He's the IT guy for a department on campus and summers are very quiet so it wasn't that big of a deal to cover for him. This is something he does every year so everyone works around the break (and I'd done this kind of work for 20 plus years so I wasn't worried.) I basically sat in his office for about an hour a day and monitored the servers, networks, backup systems and answered any questions and fixed any problems. Well, one thing led to another - word spread - and now I'm working part-time for a different department on a 'permanent' basis.

I don't really have time for a job but I decided to do this because it gives me an excuse to get on my bike every day and ride the 5 miles from my home to campus. Yes, there are other reasons but this was high on the list. I want to keep in shape because -- well because I can.  Fitness is something I still have control over. Fitness and diet are proven ways to keep healthy and keep everything working.
Before I retired I made this bike trip every day and it kept my body strong and in good alignment. After recovering from the surgery, I tried to ride that route at least 3 times a week - I even gave myself little rewards for the effort. But It seems like other projects would steal that precious time away and I'd be lucky to average one ride per week. 

I was surprised at how hard it was to ride every day. I had really gotten out of shape. It seemed like my strength and endurance were shot. I was wondering if my weak kidneys were causing this or perhaps my thyroid condition (which only hit last winter). Some days it was really a chore to make this trip.  But after a month of so of riding to this new job, the fatigue wore off and now I ride easily again. Some days it's a little rainy or if I am just tired and I think about taking the bus. But then I think, "Well, I'll just get on my bike and take it easy today." Before long I find that I'm riding hard and feeling just fine again. I have gained a little more power.

I was reading the paper one morning before I decided to accept the offer of this new job. There was an article about how people who work longer tend to live longer and have significantly less trouble with memory loss and early onset Alzheimers.  This made sense to me and, at the time, I saw it as another way to take back some control. Another reason to give this job a try. Another power that I can possess.

My new job is very challenging. It has certainly forced me to organize my thoughts (and memories) once again. I have been away from IT (information technology and information systems support) for over five years and that can be forever in "IT years". I have been surprised at how many bits and pieces of information where dangling at the edges of my consciousness and on the verge of falling forever from my memory just waiting - it seems - to be snatched back in the nick of time.  I still know how to ride this "bike" but some of the familiar paths have become strange and some of the trusted shortcuts over-grown. But I now have Siri and Google to help guide me (as well as a number of old friends - who have not yet retired). So the ride back - though it has not been easy - it has been pretty smooth.

So when all is said and done, I believe I have been able to wrest back some control over the circumstances of age and fate - mind and body.  It may all be an illusion but I believe it has given me power over my little world. And that belief, in itself, may be enough.

I'm sorry..

A slap in the face.

There are times in our lives when we deserve a good slap in the face. Maybe we made an inappropriate comment or we insulted someone and it took slap or a punch to put us in our place. Like when Sir John Gielgud slapped Dudley Moore in the movie Arthur - "You spoiled little bastard." he said, "You're a man who has everything but that's not enough...."

Yesterday I got an email from my sister-in-law. They have found two large masses in her lungs. Because of her severe COPD they can't even do a biopsy. They think she has a year to live.

I guess it's not my party. 

Moment of silence - and then move on.

 One kidney has shut down. The other is holding it's own.

I met with my Urologist to discuss the results of the renal scan and the nephrostomy 'treatment'. He removed the tube and the bag. I asked my questions. He answered. 

To me, it seemed like a long time to carry around this nephrostomy bag that wasn't really collecting anything. The tape that was holding it to my back was peeling off - even the reinforcements that I'd added were getting weak - and I was getting a rash. So it was a great relief to get the tube taken out - but then again, not so much. My Urologist explained that he wanted to give the kidney the best chance to improve it's function by removing any restriction to drain off produced urine.  This back pressure - if there was any - could have been caused by either an obstruction (return of scar tissue blockage) in the ureter or by the "normal" functioning of the neo-bladder.

According to the renal scan my right kidney is now functioning at about 9%. Two years ago it was 19%. With this small a production this kidney may be more prone to infection building inside. So as we go forward, I should note any unexplained fever and/or back pain. Again, this kidney is not hurting anything by staying where it is but if it starts causing problems it should come out. This is a laproscopic procedure and not much fuss.

I pick up on words and reactions (body language) from technicians, nurses, and doctors. Perhaps too many. Too sensitive. A "Good luck." or a "Is that all all we're doing? (like "aren't we going to do more?"). I don't know.

I guess I've accepted the loss of this left kidney. So I turn the conversation to the remaining kidney. "The elevated creatinine means that one is not working right either, is it?"

"Creatinine is little high but that isn't the most important measure. The electrolytes [he recited a couple other tests that had been a little high and are now back withing range] and acidity are more important. This is what requires dialysis. Your levels are fine on those tests."

I talked about some difficulty in peeing at night - before bed or when I wake up. "Sometimes it takes a lot of work - and pressure - when I know there is more to come."

"Is it all the time?"

"No, every now and then."

"Some patients learn to self-cath."

 That shuts me up. "No, not that often."

I reminded him; "You said neo-bladders, by their nature, are hard on kidneys. Should we be talking about getting rid of the neo-bladder? Like putting in a port and start using a bag?"

"Oh, I wouldn't do that. I'd just do a [foley] catheter at this point. No need to make another port. And the remaining kidney is doing fine. We're a long way from that conversation."

He said he'd put in orders for blood work every month and have ultrasounds every [three months?] to watch this right kidney. Maybe my concern for my "remaining" kidney's welfare has made him a little little more concerned as well. Justifiably so??? Do doctors get so focused on this organ or the other that they loose the big picture - like life and death. I don't believe that for a minute but it's still good to talk and share feelings and fears.

We're a team here.

Before I go I want to say that I don't mean to make out my doctor to be uncaring or insensitive. Quite the opposite. He is very attentive to my concerns and questions. He is a vary positive person. Very up-beat and every meeting leaves both me and my wife feeling satisfied and encouraged. He is a very nice person. He has an excellent 'bedside manner'.

And I feel fine. My wife says; "You feel fine." (Implication is; "Stop whining.") Okay.

I've got my questions.

Is it time to start asking the tough questions? 

I've had a nephrostomy  in place for about a month. This is a tube running into my back that connects my left kidney to a collection bag pinned to my underwear. I just had something called a Renal Scan where they injected me with some radioactive dye and then watched it collect in the kidneys and bladder.  The collection bag has remained pretty much empty. The renal scan showed "nothing" in the left kidney. 

I was in perfect health when they detected the cancer. i exercised regularly and ate sensibly. I didn't smoke and didn't drink. I was probably healthier than I had been in 40 years. My kidney function was well within normal range and unchanging through the chemo. After the surgery it fell a little (creatinine elevated) .  This led to the radiology work where they measured flow from each kidney and found very little on the left side. They discovered that the uriter from the left kidney was obstructed where it had been attached to the new bladder so they did the balloon thing to break out the scar tissue where the tube met the neo-bladder and then placed a stent to keep it open. After a week or so they removed the stent and injected some dye and found it was flowing  "like gangbusters". But this kidney was already swollen by then and they figured it was only about 18% operational. The creatinine stayed level (didn't go down like we were hoping) so they decided to watch and wait for improvement. Perhaps the kidney would recover now that the back-pressure had been removed. Hopefully it was not too late. 

Now here we are. Apparently it was too late. What happened? I don't know. Could it have been prevented? Maybe if we would have detected the obstruction sooner - who knows.  Which leads me to my question. "Who knows?" It seems to me that nobody really knows much about these neo-bladders. Yes, they know how to make them. They have that procedure down very well and the success rate is amazing considering what they do. But what then? How do you live with them? How does it change the rest of the body? How does it effect the other bodily functions and the other organs? How does it change the parameters of care (or whatever the medical profession calls this). It seems to me that the attitude is that the neo-bladder is a cure for this dangerous form of cancer. And it is very affective so here we have a cure for this cancer. Great. That's it, we're done. Another success for medical science. Why should we waste our time (and money) looking for alternatives to this wonderful procedure. We have other fish to fry. 

Okay so people who get neo-bladders (or urostomy's for that matter) don't die from cancer. They die of kidney failure, or infection, (or 'shame'), or some other side effect of the alternative bladder.  This death shows up on a whole different column in the tally sheet. It is applied to a different statistic. It's a whole different area of research with much less public interest and, therefore, much less (if any) funding. 

So how do we keep people with neo-bladders alive? I believe the answer, unfortunately; is all too often; "Neo-what?" Think I'm kidding? Next time you're talking to your doctor ask her/him that question. 

If you have been following this blog you now that I have been asking these questions and it seems to me that I've been getting different answers - often from the same doctor.  Mostly they tell me not to worry. I have one good kidney and that's all that a body needs. Recently I told this story to my brother who is a retired surgeon. I told him about the failing kidney and he asked how they knew it was failing. I said from elevated creatinine. But I said they aren't worried because my right kidney is working fine. He said if my creatinine is high the right kidney is NOT working fine. 

But how can I complain. How can I question my urologist/surgeon. He cured me of cancer; he saved my life - so what's my problem. I know; what have I got to cry about - I'm alive!  Well, it's my party and I'll cry if I want to... 

I am scheduled to meet with my doctor in a couple days to have the nephrostomy removed and to discuss the results of this and the other test. I will ask my questions.

May God bless you...

A song on my brain this morning.

I woke up this morning with a song going through my head. This is pretty normal for me. It's usually a  'real' song but sometimes it's just a tune that I can't place in my memory. This morning it was "The Sabbath Prayer" from "Fiddler on the Roof". This is one of the most beautiful songs I know and what a great way to start the day. It makes me wonder what I was dreaming. 

Many years ago I was in the cast of a production of 'Fiddler' by the Children's Theater of Madison and that song gave me goosebumps every time we sang it. It still has the same effect when I hear it or think about it. "May God bless you, and grant you long lives..."

These days I get up early in the morning - usually before the sun - and a couple hours before the rest of the family starts rousing. This gives me time to go over whatever 'tunes' are in my head. Since my bout with cancer, this time has become even more important to me.  Recently I heard someone say that every hour we add in the morning is an hour added to our lives.  So even as beautiful as my dreams must have been, I am glad to be awake and alive this morning. I am glad to be ahead of the sun. I will soon enough have forever "... To sleep, perchance to Dream; ..."

"May the Lord protect and defend you. May the Lord preserve you from pain..."

Is it in your head yet? You could do worse.

You're welcome.