Tuesday, November 1, 2016

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.

Thursday, April 21, 2016

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.

Tuesday, March 29, 2016

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?"


Friday, March 18, 2016

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.

Thursday, September 24, 2015

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....

Saturday, December 27, 2014

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.


Thursday, October 2, 2014

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.