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.

Progress with kidney.

Progress with kidney? Not much.

This morning I took my last dose of antibiotics that I've been taking for a week to knock out the staff aureus infection I had in this kidney. I still have the nephrostomy but the bag doesn't get nearly enough 'action' - maybe a teaspoon per day. I will have my blood tested again this week to see if the creatinine has gone down. I'm hopeful but not very optimistic. This kidney doesn't seem to be doing much of anything even with this tube giving it a clear drain-way.

I still bike to work every day and we drove 2 hours to Green Bay on Sunday to see the tall ships. I'm no longer feeling knocked out by the antibiotics and I'm taking a pro-biotic to help my digestion. So I feel fine. The nephrostomy hasn't been a problem but it will be nice to get it out just the same. But I'm in no hurry - just in case.

Too easy.

Too Easy

My friend calls them 'piss bags'.

Right after my surgery to replace my cancerous bladder with a neo-bladder, I had two of them and  when he would see me, he would say; "How are your piss bags?" I'd tell him (truthfully) that they were a pain in the butt.  They keep filling up and I have to keep emptying them - which is more repulsive than it should probably be.  But they are also heavy and uncomfortable as they fill up. They are hard to hide - if you're self-conscious. So I was very happy to be rid of them.

I have a 'piss bag' once again with this nephrostomy. The good part is that for the past 5 days - since it's installation - I really haven't had much to do.  The bag doesn't get heavy or make a bulge. It doesn't need emptying because it doesn't fill up.  So I just fold it up, pin it to my underwear and forget it. Every day I empty a couple tablespoons of fluid but that's about all.

But, of course, I know that this is also the bad part. This represents the total output of my left Kidney and should be measured in cups and not tablespoons (if I were measuring things). This concerned me right away and the day after the surgery I called my urologist. He said it sometimes takes a day or so for the kidney to recover and start producing again and I should call if it doesn't start in another day.

The next day was a Saturday so I talked to the doctor on call who recommended I go to the ER and have an x-ray to see if the tube had moved out of place in the kidney. Four hours later the radiologist ( same guy) injected some dye and said everything was still perfectly positioned.

He had tested the urine when he first placed the tube because it was thicker than it should be.  He said that the lab came back positive for infection. He said that he's seen this before when a kidney is having troubles (my words). He recommended that I call my urologist on Monday and see about some antibiotic.

Monday, my urologist called me and put me on a week-long course of antibiotics. I hate taking these things but we're fighting to save a kidney here so ...

I've been looking up kidney friendly diets. Hmm.

Can This Kidney be Saved?

The last 6-month check showed creatinine levels a bit higher.  Another test, after a month,  verified and showed a continued rise.  Once again I am asked to come in and visit with my Urologist. These meetings scare me.

Over the past couple years, my Creatinine levels had pretty much leveled out - high but steady - but on my last two checks they have started to inch up again. Nothing real serious, according to my urologist, but a sign that the tube that drains my left kidney (the one that has been swollen) into the neo-bladder may be closing up again with scar tissue where it is attached to the bladder.

So here I am with a brand new tube coming out of my back and draining into a brand new bag on my leg. I've had this tube before but I haven't had the bag - so that's new. The surgery was easy. I was awake and able to move my head to look around, able to move my arms to get more comfortable, and talking to the nurses and anesthesiologist through the whole thing and I even still remember a little of it.  But there was no pain.

They wanted me to hang around for a couple hours after it was over to make sure I was functioning again. I had a hearty meal and drank a lot of water, since I hadn't eaten in nearly a day or drank anything for about 8 hours. The radiologist, who put the tube in, told my wife that everything went fine. He was a little concerned that the urine was so thick and he took a sample to be analyzed by the lab.

It's been about 12 hours since the surgery and I just biked in to this coffee shop and from here I'll go to work (I'm working again).  I feel fine now but I did wake up in the night with some pain and I was a little nauseous. I took an Advil and lay back down - both of which helped.

There hasn't been much flow into that bag and it's still quite red. So it crosses my mind that maybe the urologist is less optimistic than I had thought. Maybe the real purpose of this nephrostomy is to conclusively prove, to both him and to me, that this kidney has stopped working and needs to come out.

We'll see.  The plan is to keep the tube in for a couple weeks.

Another Year Good!!

Why am I so scared? 

Chest X-ray, blood test, Kidney Ultrasound, and then meet with Urologist/Surgeon for annual followup inspection . 

Yes, these things still make me numb with fear. I'm sorry but I can't help it. I always have the feeling that the other shoe is about to fall. But all-in-all the report is that everything is fine. Chest x-ray is normal - whew. Kidney ultrasound has not changed since last year - left kidney is still swollen (and probably still not working all that well ~ 18% effective) but the right kidney is just fine. ]

Blood Test:

My creatinine levels are up a bit (again) at 2.4 instead of the 2.1 (remember that last year they had had moved from 1.9 to 2.1 and stabilized there). I need to come in for another blood test in a month to double check. 

Something new this time is that the acidity of my blood has gone up. This is a concern because it can lead to early osteoporosis. Apparently it is quite common in neo-bladders because the intestinal tissue that makes up the new bladder absorbs things back into the blood that the kidneys have just filtered out of it. This will be retested in a month as well. If it stays high I may need to go on some supplements to keep it in check.

I need to keep hydrated and hydrate well before the next blood test which may improve these readings.

Other: 

I feel fine. I have some pain in my left side but I also have a history of chronic lower back pain which is diagnosed as arthritis. I get a lot of exercise either from riding bike, umpiring baseball/softball, or working in my woods (pruning trees and spraying/clearing brush).

Thyroidosis: 

I have been diagnosed with Hashimoto Thyroidosis and am beginning supplement therapy. This has really been a roller-coaster ride of energy, weight and strength. My Endocronoligist says it takes a while for everything to settle down and I need to hang on for the ride for about 6 weeks (almost there) before we can re-test levels and see if the dose is right. I might post a note on this whole trip.

Whatever Happened to Stem Cells

Here is a link to an article in the April issue of Esquire magazine:

Whatever Happened to Stem Cells

It is about a researcher who has been working on the science of building organs from stem cells. 

He has already been successful in building whole human bladders from fragments of injured bladders and then. successfully, putting these new bladders back into the bodies of young people who have survived and prospered. But when he works with stem cells he is continuously stymied by politicians on both sides of the issue.

This article will make you want to throw your arms up and scream. It made me want to cry. But if you read through the whole thing you kind of come away with an optimism that there may be a light at the end of the tunnel. This man, and many patient, dedicated, persistent, scientists are not giving up on this and, even with all the road blocks, are learning more about stem cells. Thank God there are people like this in our world.

Researchers are making large gains in the knowledge and science that will save millions of dollars (for things like dialysis) and improve the quality of life for millions of people who suffer from chronic and/or terminal injuries and illnesses. The tragedy for all those of us who are going through these things right now is that our politicians have kept this science from being any help to us.

Winding down and Moving On

A real winter has happened this year in Madison.

I haven't been keeping up with this blog because I haven't been able to ride bike due to the snow and ice that have just kept coming all winter. Most years we get snow and then it gets warm and the snow melts and the bike paths and sidewalks open up again. This year they didn't.

It was a great year for ice skating, however, so I did that. The route from my house to campus (and this coffee shop) crosses a big lake and I don't go there.  So I ended up skating in much smaller circles on the ice at a local lagoon.

No news is good news...

The other reason I haven't written is that there really isn't much to tell. And, unlike cable news channels, I don't feel the need to 'report' if there's nothing going on.

I have gotten quite comfortable with my 'new' body and it's demands are becoming automatic (mundane?) and fading from my consciousness. Not to say that I'm ignoring them. I have kept the new habits that are designed to mitigate any chance of a relapse and to strengthen my remaining body and it's organs. And I continue to strive to minimize stress upon these systems by drinking lots of water, a nutritious diet, regular exercise, and a healthy environment.

... for now??

I will keep writing but since it is off topic for this blog I will probably concentrate on other blogs and my own web site. Thank you for reading. I will pick this up again if and when there is something to write. Let me know if you have any questions, suggestions, or new information relating to bladder cancer or cancer in general. Or if you'd like to share your own experiences. I would love to hear from you.

Old dogs...

This old dog has learned a new trick - from a cat.

Yeah, this is about neo-bladders and peeing - but it's short. 

Our cat, Ellie, has a habit of coming into the bathroom whenever she hears me sitting down to pee. She meows and rubs up against my leg but whenever I reach out to try to pet her she starts walking away.  A couple months ago I grabbed her back and she lay down and let me rub her stomach. In order to do this I had to bend over completely and - low and behold - this forced a lot more out of what I'd thought was an empty bladder (I'd already gotten all I could get using 'traditional' methods).

This makes sense, now that I think of it. When I'm folded over like that, it compresses that whole area.

We learn a lot from our cats but it's usually only about how to keep THEM happy. Thanks for this one Ellie.

Thyroid results

Just a brief note about Thyroid levels.

As I said in my last post, I have bad been feeling weak, sensitive to hot and cold, and I had been loosing weight (about 10 pounds) without changing my diet.  My doctor checked my thyroid levels and found them to be out of kilter so he sent me in for further tests. Among these were an iodine uptake scan where I drank some radioactive iodine and they watched where it went in my thyroid.

He also sent me to an Endocronoligist, in March, who told me the following:

Better news: 

I did have Hyperthyroidism where the hormones that the petutitary gland uses to control the thyroid are the following:

• TSH low
• T4 high.

But my Iodine uptake was also low which was a normal response for the thyroid under these conditions.

This indicates that things are working but for some reason thyroid is producing too much - pituitary is reacting normally ( it lowers TSH to tell the Thyroid to stop producing so much) For some reason the Thyroid wasn't listening. This may be due to a virus-like thing in the thyroid that will likely pass on it's own.

So we'll watch this by checking levels in a few weeks intervals. Things should level off normally with time. Not quickly.

If not this can be treated with supplemental hormone therapy. This is a very easy thing with no side effects.

Better feeling:

As of April 15th, I have not had another test but I am feeling completely back to normal. My strength and endurance are back; I have normal response to temperature (no night sweats); and I'm gaining my weight back nicely. I'm not all that thrilled about the last one but I'll take it along with the others.

Happy New Year.

Hello 2013! What's up?

As I pass into the new year I look back BRIEFLY, if only to count the years since my surgery and thank God for the 3 years I have been given. Okay, that's it - onward....

Status:

My Creatinin levels have stabilized (again) at 2.1 so the doctors are happy. Before last fall they had stabilized at 1.9 and they were happy with that, as well. I have to wonder if this is going to continue and these levels are going to continue to slowly creep up. Does it mean that my kidneys (or one remaining good one) are deteriorating and will continue to do so until... ?

I feel good. No kidding and I'm not just 'dancing' around this [see 14Aug12 blog 'May I have this dance']. I don't feel the same as I felt before this all happened but who feels the same as they did 3 years ago, anyway.

I have noticed a real decline in strength and endurance over the past few months. I also have had problems with being too cold in the day and too hot at night (no matter how many covers). I have been loosing weight at a time of the year when I usually gain (how can I complain about that?). I have only just talked to my doctor about this (I put it off for fear that he would say I was just getting older) and he checked my Thyroid levels. These are, in fact a bit out of whack so I am scheduled for some followup tests:  and have an appointment with an endocrinologist. Stay tuned.

Thanks.