At risk of sounding too happy....

Yesterday was hard. The front brake on my bike had been broken for about a week and I was waiting on a cable ( it was taking this long for various reasons).

 I've been noticing a tender spot on my stomach and I have thought it caused simply by a run-in with a piece of machinery. I heal slower these days from such things.

The chorus of little voices in the back of your mind whisper "what if it's more?". And pretty soon my perspective shifts slightly and the world around me becomes more distant. The projects that I'm working on seem less relevant -- less important. Should I even be bothering with refinishing this old chair -- building this clock -- planting this garden? It's a terrible feeling. Maybe it's depression.

Then my new brake cable came in the mail. I fixed my bike and this morning I went for a long ride. Maybe all that long a ride but it was far enough to bring me back to my world.

Tonight I umpired for a U14 girl's softball game. It'd been a few weeks since I'd ump'd and this had been fading into the distance as well. It's back now. I'm back now.

For these little things and for the big thing like my loving family and close friends, I am truly happier than I have ever been.

A cautionary tale

I recently received a letter from a fellow who fought in the Vietnam War. He survived many battles over seas and now is fighting bladder cancer.

"I first had low grade tumors; stage 0 back in 1998-99. The last one showed up around 2000 then nothing until last March. The ones in March were still low grade stage 0 but one was pretty big. They put me on BCG weekly chemo, right in the bladder through a catheter. The follow-up in mid Aug showed more tumors but the new ones were high grade and stage 1, not good. Now I'm on a 6 week course of BCG with Interferon. At the end of November I'll have a CT scan. Depending on what the scan shows I'll have a biopsy of the bladder in mid December and go on from there."

"I've talked to a friend who had neo bladder surgery in April and is in pretty good shape now. A younger guy I worked with also has the same thing I do but he's only 46 and has never smoked. I smoked for 23 years starting in Viet Nam in 1970. There has also been talk of an Agent Orange connection at the VA. I was in the most heavily sprayed area of the country. Who knows what caused this. Right now it doesn't matter. "

I Asked him how he first noticed the cancer. 

"I was working under the kitchen sink one evening while on my back. I got the urge to tip a kidney and when I did I noticed it looked awful, not blood but brown. It just didn't look normal. I went to urgent care clinic at the hospital. The old doc who checked me out thought it was kidney stones and sent me home with a funnel to capture any that remained. I had no pain at the time. "

"Weeks or months later a drop of blood showed up and I was sent to my urologist. He wanted to do a cystoscope exam which I resisted. He said it may have been stones but needed to make sure it wasn't cancer. I told him I'd wait. Dumb move. "

"I came back months later with more blood and did the cystoscope exam where he found a tumor. I had it removed in the hospital and went home with a catheter for 5 days. The pathology report came back, low grade-stage 0. Smaller ones showed up at now and then and were zapped at the doctors office with a machine I called the welder. I did regular follow-ups until 2007 with no tumors and then quit going. Another dumb move. "

"I think all men should get a yearly exam starting at age 45 whether they have symptoms or not. I think they'd catch them while they are still very treatable."

I second that!

Good luck and keep me posted.

No problem

In response to my last post, a friend wrote: "This time will not be like the last. Though it has the same label they are very different. It is normal to be thrown back to where you were when you first heard the word, but try to focus on the fact that you are not going back to where you were under any circumstances. "

The wound left by the biopsy had healed and I was sitting in my dermatologist's office waiting for the 'Novocain' to finish numbing my skin.  In a few minutes she will return and cut out a piece of skin and about 1/4 inch of underlying fat that surrounds this thing.

Outline for cut

As she drew the outline for the cut, she explained what she would be doing. She said that I was lucky it wasn't on my face because that procedure takes all day as they want to minimize the amount of tissue they remove so there isn't such a big scar. Here they don't mind taking a lot of tissue in order to make sure they get it all in one cutting.

She said that my basal cell was kind of rare in that it was pigmented. She said (lightly) that I should feel special. I told her I didn't want to feel special. She assured me that it was absolutely no more of a problem and just a difference in appearance. 

The surgery was a piece of cake. The cut only took a minute. No I didn't watch but she gave me a play-by-play. She takes a little extra skin around the thing and some fat from underneath. The lab then slices the sample and to make sure they have clean slices all around the thing.

Once the sample is removed she prepares for stitching by separating the skin from the underlying fat for a tiny margin around the hole so that the skin will be easier to stretch. She cauterizes a few blood vesicles to stop the bleeding. I might feel a little burning sensation -- maybe it's just the sound. Then she puts three stitches inside and seven on the outside. Each stitch she asks me if I feel anything. Not a thing.

She tells me that this will cause a large bruise (I should make some sort of fun story for friends.) I told her that bruises aren't uncommon for umpires. She urged me to not do any games for a couple days -- or anything else. "We don't want you to start bleeding or rip stitches." I assured her that wouldn't be a problem; I plan to milk this for all it's worth.

So that's it. The nurse put on a bandage that is to come off after 48 hours. Wash with mild soap and apply Vaseline and do not cover. "Wear old T-shirts." She warned. 


Within a couple days I had an email from pathology lab saying they found 'clear margins' and 'this indicates that the abnormal growth has been completely removed and requires no further treatment.' 

Beautiful words.

What is 'cancer free'?

It's been 6 years since they removed my bladder; and all the cancer it contained.  Since then there has been no sign of it returning. I am 'Cancer Free' and counting.  Right?

Over the Christmas holidays I noticed a small sore on my chest. I put some Bacitracin on it but it didn't clear up.

In January my doctor prescribed some stronger antibiotic cream. It didn't clear up after a couple weeks so she referred me to a dermatologist. It took me 3 weeks to get an appointment (they must be backed up).

The dermatologist said that it looked like a Basal Cell Carcinoma. She told me not to freak out because this is a very treatable form of cancer. She 'pealed' off the sore, along with some surrounding skin for a biopsy. She said that she'd call me in a few days with the results and sent me home.

No surprise; the biopsy came back positive and I am scheduled for outpatient surgery in mid April.

I know a ton of people who have had this, and it hasn't been a problem for them, but somewhere in the dusty matrix of my mind there is a small, shaky voice whispering a tune that I recognize (I've heard whole choruses sing it in the past.) This voice is so tiny that it is easily drown out by the rest of my life. But when it gets very dark and quiet in the middle of the night, I can sense - more than hear it - on the very edge of my consciousness saying; "You're no longer cancer free?"

Pride precedeth the fall (?)

My doctor retired recently. We've been together a long time. Change is hard.

My first visit with my new doctor came as a follow-up to a late night trip to the Emergency Room.  My head had been hurting for a few days and that night it became 'unbearable'. Of course I was worried about a tumor, or an aneurysm (you know, something that people have on Facebook.)  After they scanned my head and took some tests the only thing they found was that my blood pressure was like 200-something over 100-something. I was stunned at this. It's been pushing the limits lately but never anything close to this.

I've always prided myself in not needing any pills to keep me going. Many years ago, when my BP crept up, I changed my diet, quit drinking, began riding bike and lost a bunch of weight. Problem solved. But not this time.

The ER doctor injected some beta-blocker and told me to see my doctor ASAP. This could be a sign that my kidney (remaining good one) is having troubles. It's a cyclic thing: kidneys help control the blood pressure and high blood pressure can damage the kidneys. I made an appointment and saw my doctor the next day.  ]

Now we have started the process of selecting the correct BP treatment. There are two classes of BP meds. Each contains a wide variety to choose from. One class targets the kidney's control system. The other uses the heart's. Since we don't want to mess with the kidney, we will choose the heart.

My wife asked; "Well, what about the headaches? What did she say about those?" I passed the scan and all the neurological tests so it's most likely tension. Yeah, I've heard that before and I know the drill. It's another of those cyclic things but now that I know what it's NOT, I can relax a little. I know it works. And now that spring is here I can start riding bike again. This helps everything. 

P.S.
I've only seen my new doctor twice and both times she has asked if I was seeing a kidney specialist (Nephrologist). I have said 'no' and she's let it go. My annual physical is coming up and I will pursue this.

Another good year.

Going on five years...

So, after last year's exam, the ultrasound was switched from every 6-months to every year. The first of these annual tests happened the other day and it gave the same results/trends as the last few. It showed that what was working is still working and what's not so good really hasn't changed either. But that is really a good thing.

Ultrasound summary: "Extrarenal pelvis on the right ('consistent' with Neo-Bladder). Changes of prior bladder surgery. Progressive diminution in size of the left kidney." 

 In english: the left kidney is not swelling but is not really doing much of anything so it is slowly fading away. The right kidney is doing all the work and even though it does show some swelling, this is caused by normal reflux from the neo-bladder. (These man-made bladders don't have the valves that prevent this back flow to the kidneys.)

The blood tests show my renal function is stable (Creatinine hovering around 2.1).

In summary, we don't need to do any more ultrasounds as long as blood levels remain stable. This also means that we won't need to meet with our urologists/surgeon any more. We kinda liked him after all this and will miss these little visits.  But this also means that I am now too 'normal' to keep a specialist on retainer. And this is good. 

Knock on wood....

Four New Years

The fourth anniversary of my surgery has come and gone. 

I can't believe it's only been four years (actually my wife had to remind me that it was November 19) it seems like it's been a lifetime. These four years have been a gift for me.  If I hadn't had the surgery I'd have been dead at least three years by now.  I hope I am making the best of these new years.

I have done my best to do the following:

• Share time with our two grandchildren.
• Share time with our kids.
• Study writing; fiction and non-fiction (on this blog and others).
• Study guitar (learn a new song - at least one - every month). 
• Volunteer a few hours a week along with my wife.
• Maintain the thriving young forest/woodlot which we started planting 15 years ago.
• Study woodworking - making things out of trees gown on - and harvested from - family woodlots.
• Umpire youth baseball/softball and coach junior bowling.

So this holiday season - along with the three before it - has had great meaning for me. Every day I take a breath and think how happy I am (like I know the other shoe will fall but I'm not sitting around waiting for it. ) I thank God for letting me hang around a little bit longer. I hope she thinks it's worth it.

I hope the new year brings you health and happiness.

Good News at six-month exam.

 My doctor (Urologist/Surgeon) came into the exam room with a big smile on his face and said; "It's all good news." And then; "Hi".  I had just come from the ultra-sound exam of my kidneys and bladder (neo-bladder) and he had these results and my blood tests in hand.  The ultrasound showed the swelling of my 'bad' left kidney has gone down significantly and my creatinine level is the lowest its been in two years (2.0).  My 'good' right kidney looked normal (slight swelling but that's normal with neo-bladders  - and even more so since it is still doing most of the work.

I reminded him that he had once said that a kidney that has quit working will shrink (did he say atrophy?) and he agreed that that may be what is going on here. But it's not causing any problems and the remaining kidney seems to be doing just fine.

And then, as if to punctuate the good news, he said he didn't want to see me for a whole year. That's just fine with me because as much as I like this guy, historically these meetings have brought bad news about half the time.

Presure

In general, pressure is not good for our health. Our bodies sense different kinds of pressure in different ways. Sometimes we recognize it right away and do something to relieve it, and sometimes we don't. Either we don't recognize the signs or we ignore them until ...

I need my head examined (??)

About a month ago my head started hurting. When I shook my head it hurt. Like there was a steel ball in there and it was banging around. I could take a Tylenol and it would go away so I wasn't too worried about it - at first. Then a friend died of brain cancer. And another one had a tumor removed from behind her eyes. And my head still hurt after a couple weeks. And it seemed to be getting worse - not better.

So I visited my doctor. After a full neurological exam he said it was stress - or arthritis in my neck. He could take X-ray's of my neck and send me for PT if I wanted.  I passed. He said a couple Tylenol are okay. I have been fearful of pain medicines because of my kidneys but he assured me that Tylenol is hard on the livers of drinkers - but I don't drink so I should be fine.

A couple weeks later my headaches seemed worse. Another visit to my doctor and slightly different symptoms; pressure on my ears. He again assured me that it wasn't a tumor and suggested a decongestant. I took a Xirtec and felt immediate relief in places I didn't know I had pressure. This was nice but by morning my head was really hurting (I get this from antihistamines.)

Once my sinuses recovered I was feeling pretty good and resolved that this was, indeed, a stress headache.  I only had a couple days of work remaining before I re-retired and even thought I didn't think my work was the least bit stressful, perhaps leaving it was. In the nine months that I'd worked there I'd come to know all the folks in this small department, and they all seemed to be very appreciative of my work and the help that I provided. Yes, it's very hard walk away from that. 

Too full (another kind of pressure)

My wife won tickets to a pre-screening of the movie "A million ways to die in the west." I had a softball double header scheduled ( I umpire) but it rained out so we went to dinner and a movie. As I waited for the movie to start, I thought I should go to the bathroom. I felt a little 'full', you know. With a Neo-bladder this sensation is very faint and easy to ignore. I ignored it. The movie was good so I was effectively distracted. Walking out I realized that all the cups of coffee and glasses of water at dinner had built into something that felt like a cramp. But unlike normal 'gas' cramps this didn't go away after relieving the pressure. I'm sure I stretched something that shouldn't have been stretched and it left a 'bruise' in my bladder - for want of a better word. For a couple days it was very painful to even walk ( thankfully they re-scheduled the double header three days later instead of one.)

 I have had this feeling before - since the surgery - and it doesn't do much good to complain about it because nobody understands. But I was very careful to keep my bladder empty and it seemed to fix itself just fine - in time.

Oh, did I mention that I re-retired. It's been a week and it feels great! Yes, my headaches are pretty much gone. I don't know - I'm just sayin'.

Retired again

My brother is a bit older than me and he has retired three times. Last fall, when I told him I'd gone back to work, he told me;  "It's okay to come out of retirement if, and only if, the job is absolutely the most fun thing you can possibly think of doing." It was - and then - it wasn't.


So here I am once again, sitting in Peet's Coffee Shop after my morning bike ride. After I finish my coffee I will ride back home to a long list of favorite activities - many of which I have put on hold in favor of work. Sound familiar? There is a stool on my workbench that has been waiting to be glued-up and finished for a year. And there are shelves to make and a table to finish. There is a boat that needs to be floated and a fishing pole that needs to be flexed. There are plants in the greenhouse that need to be moved to the garden. There are baseball and softball games that need an umpire. There are trees that need to be pruned and brush that needs to be cleared. And there are web sites that need updating.

 Last time I retired I got bladder cancer. This time I am hoping for better results. My last day of work was May 23, 2014.

Random Act of Kindness

It was -14 degrees (not including the wind chill) this morning as I stood at my bus stop waiting to go to work. A city police car pulled up and the officer asked if I would like a ride.  I told her that I was going to campus and she said that she couldn't take me all the way there, but she could get me a lot closer. I thanked her and said there should be a bus along soon. She said she'd drive by again in a few minutes, just in case.

This was the most amazing thing. It made me so glad that I had decided not to skip work today because of the cold because I would have missed this experience. The bus did come about two minutes later and all the way to work I was feeling the warmth of this small act of human kindness.

When I got to work I just had to tell someone so I stopped in the office of a co-worker and after comparing notes on the weather I told her about my experience. She said that was great and then proceeded to tell me her tale of being dropped off at the door by her husband ("chauffeur" she called him) because he was a teacher and school had been canceled. Okay, that was nice - but he's your husband, you know? My story is about a cop - a stranger to me - a cop - kindness - you know? Amazing right? "Well, maybe not so much", I thought and went about my business for the day.

When I got home I was still a little glowing from this experience so I told my wife the story. She immediately questioned if they had been told to do this. And then she went on to fill me in on the other news of the day. No big deal in the grand scheme of things, I guess.

I don't know about you but I thought this experience was uplifting and inspiring. I thought it proved that individual acts of kindness are possible (and quite common) - that there is still goodness and charity in our world. Our society has become so cynical, paranoid, and narcissistic. We all live in constant fear of others or that others will steal our stash. This experience made me feel really good about the world in which I live. And that, in turn, made me feel good about myself. I liked that feeling - however naive - and I will continue to use it to re-enforce my beliefs.

Maybe next time someone tries to do something nice for me I'll just keep it to myself.

Mom's Song #8

We made the trip up to my sister-in-law's memorial a couple weeks ago. This was my older brother's wife and over the years she had become like a second mom. I will miss her. I know that my bother misses her desperately. She had cancer and it won.

My mother and I used to write letters. She was a great letter writer and to her it was an art (she was an artist - in her spare time). We rarely talked on the phone and she taught me by example (and through practice) how to write a letter. I missed this when she died.

My sister-in-law loved to write as well and she sort of took up where my mother left off. We wrote often and I will miss this.

When my mother died I wrote this for her - and now I read it for my sister:

Mom's Song #8
By Stuart Baker

So - how do I do this?
So why do I try?
The basket is filling;
the pen running dry.
The words keep on coming,
but their meaning is wrong.
So who do I write to
now that you're gone?

So what happened to wit
and humor so dry?
The words either to die
on the page where they lie;
or they drone on, and on, and on, and on ....
Who do I write to
now that your gone?

The eyes of the beholder,
when they're gazing back,
can inspire beauty
where talent is slack.
(at least that was the road
you were leading me down)
But when those eyes close
does the beauty go on?
So who do I write to
now that you're gone?

[Sing the following ]
But  who's gonna finish the story;
with ending yet so far from view?
'My Life and The Times',
though none of it rhymes,
would still have been music to you.
( musical break)

[back to spoken ]
So - I guess I'll continue;
just in case you were right.
Just in case there is value;
not just in your sight.
But just so you to know it -
so you don't get me wrong -
it's you who I write to
even now that you're gone.

[Sung]
It's you who I write to
Even now....

Happy New Year

These days the mornings are cold and dark here in Wisconsin, and there's snow covering the bike paths and the bike lanes are narrowed by snow banks at the side of the streets. This, along with my work schedule, makes it hard for me to get to my coffee shop in the morning to write these posts. This morning I woke up early ( and didn't hit 'shooze') so I caught the early bus and layered against the -10 degree temp (not counting wind chill) and made it to Peet's for coffee. 

Continued good reports from the various medical proddings and pokings, combined with some personal success in managing my new bladder has helped to make this an extra special season.

Since that neprhostomy was removed from my left kidney, my urologist wanted me to have a blood test every month and an ultrasound every three. I believe this was to insure that we didn't miss any problems with my remaining good kidney. Last month my ultrasound showed that the swelling of the 'bad' left kidney had gone down significantly and the 'good' right kidney still looked just fine.  My Creatinine level had continued it's recent drop - to 2.1- which is lower than it's been for some time. All this good news prompted my urologist to change my schedule back to 6-month scans (they'll call me).

And on the management front, I have been struggling with night-time continence problems since the surgery. This has improved steadily over time and now it seems that I may have vaulted the last hurdle. I have spoken many times about the feeling before I go to bed that I needed to pee but not being unable to do so - no matter how much I strain, press, bear down, bend, and grunt.  My doctor has mentioned that some folks do some sort of self-catheter. I have taken a different tact. I have found that it's more a matter of finding the right relaxation technique than applying more force (I have also wondered if all this pressure creates reflux problems in the kidneys). And these techniques need to be different in the evening than in the daytime. I wonder if it's because I usually sit and watch TV for a couple hours before bedtime and this re-organizes things down there so that other things press against those tubes (things do move around down there more than they did before the surgery - I can feel it). Regardless, I have had good success with some of these techniques and it has made all the difference in making it through the night - dry.  Yes, these are little triumphs but they make the start of each new day just a little bit brighter.

Happy New Year.


 

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.