My Cancer Trek

Ramblings of a Survivor

Terry R Watson — Sat, 06 Oct 2007 00:47:00 GMT

Ramblings of a Survivor
Friday, October 4, 2007

I’m on the front porch with my computer following a rain. It is one in the morning. Strangely, there are several frogs croaking all around me. Luckily, they only do it periodically.

It is seven weeks since my operation to clear scar tissue out of my urethra. I haven’t written since then. I don’t really know why. Perhaps, after several setbacks, I was afraid to write that the operation worked, that I can pee normally, that I no longer need a catheter.

In my three week follow-up visit to the doctor I thought we would be officially announcing that I was home free from urinary blockage. I thought that three weeks after an operation I could feel secure that the scar tissue wouldn’t recur.

Unfortunately no. The doctor said it doesn’t work that way. So I watched and waited. Every time I peed I watched for a weak stream or a split stream. Thoughts about frequency and retention have been my constant companions.

Now after seven weeks I am gaining confidence. I think I can soon throw away my collection of catheters and urine bags. I’ve started exercising again. People are telling me that I look good. I had the energy to give several workshops in September and was able to make some very good money.

Life is good again but it will never be the same. I think a lot about Eric, Bob, Don, Jim, and the many others who have been on this trip with me. We all know that some of us will get hit again. We know that no matter what it was like this time, that it could be much worse. We have all been working on our own ways of dealing with that.

Most of the men I have grown to know will never be the same again. Most have varying levels of impotence or incontinence to deal with along with their fears of recurrence. These things change men in ways that they had not foreseen.

How have I changed? Physically, after an extra operation and several months of challenges, I think I am past the blockage and incontinence issues. I have some problems with erectile dysfunction which may or may not improve with time. That is an adjustment for me and for Mary Anne.

I have become much more aware of my own mortality. I am more determined to make an impact before I die. I have become a go-to person for a number of people who are facing medical challenges. I am more aware of those who are suffering. I have learned more than I care to know about the inadequacies of our medical systems. I have seen, first hand, how difficult it is for many people to adjust to their new lives after medical trauma. Most importantly, I have found what I want to do with the remainder of my work life.

It is late and I am tired so I will wait until another day before I share my vision of what I will be working on for the coming years.

I will say this. I believe I have found a way to have a needed impact on a lot of peoples’ lives. I believe I have found a way to make a difference.

It Sucks

Terry R Watson — Wed, 08 Aug 2007 21:51:00 GMT

It Sucks. For the last two weeks my urine stream has been slowing. By yesterday it was a dribble. I headed for the urologist’s office. The doctor immediately told the nurse to prep me for the cystoscope. That’s the camera up the urethra thing.

You know you’re in trouble when your doctor brings in his partner for the procedure. The camera went in and as I watched on screen I saw this nice clear reddish tunnel but first looks can be deceiving. A little further in and there it was – a wall of scar tissue.

There appeared to be no more than 5-10% of the channel open and that was only when they pushed the probe against the blockage. The look on their faces said it all. I had a big problem. They used the probe to push aside just enough blockage to get a catheter through. Yes. I’m back on a catheter.

Surgery is scheduled for a week from Thursday. They will be doing a modified TURP procedure which some refer to as a roto-rooter. I’ll be in the hospital for one or two nights.

This is not without risk. The doctor says I could become incontinent as a result of the procedure, particularly with the other damage I have had in the area. He also said that the scar tissue blocking my urethra may very well grow back in a matter of months, forcing us to go back into surgery. Finally, he said I may eventually need to have a radical prostatectomy to take out my already dead prostate material. That is the operation we went to Japan to avoid. It requires general anesthesia, which carries a risk for me due to my heart disease and sleep apnea.

All in all, not a good day. I guess I should appreciate the fact that I live in a place and time where they were able to unblock my urethra. The alternative would be pretty awful.

PSA Results

Terry R Watson — Sat, 21 Jul 2007 20:44:00 GMT

It’s in and it is good. PSA is 0.1. This is a very good PSA following HIFU and a good indicator that there aren’t a bunch of cancer cells ravaging my body as I write this.

I am very thankful and am thinking a lot about the others I’ve talked to who have not been so lucky.

The urethra is still acting up. I have had diminished strength of urine flow over the last several days and have a urinary tract infection. We don’t know the cause of the flow problem but are going to wait until I have knocked out the infection and see the status then..

The urethra stuff has been tough, but in retrospect, if we have gotten ride of the cancer, it has all been worth it.

The First Post-op PSA

Terry R Watson — Wed, 18 Jul 2007 14:36:00 GMT

Today is a fork in the road. I get the results of my first PSA since my operation in March. The PSA is an indicator of whether or not the cancer has returned.

Up until a few days ago I didn’t think much about it and I was pretty confident that there would be no problem. This week however, I have had contact with men who have suffered a recurrence. Also my urine stream has gotten weaker. I have to admit to feeling some anxiety. Of course when that happens it is human nature to look for things that confirm your fears. When the assistant from the urologists’ office called yesterday to confirm the appointment she seemed uncomfortable talking to me. It is a small office and they have had my PSA results for several days so she would know. She is a person who I can normally joke around with, but she seemed to just want to get off the phone. Maybe she was just very busy.

So I need to get this posted and go. In one hour I will either be very happy or I will be back into a difficult journey.

A Lesson in Appreciation

Terry R Watson — Mon, 25 Jun 2007 03:40:00 GMT

I walked in King Corona last Thursday morning and as usual got a warm greeting from everyone. Joe Perez asked how I was doing and I said I was doing well but bitched a little about the leaking. Joe put things into perspective. “Think about how much better off you are than when you had a tube running out of your dick and a bag around your leg.” He said a little leakage is nothing. He pointed out that it was still early after my operation and that it should keep getting better and better.

It is funny how quickly we begin taking things for granted and begin wanting more. Only two weeks ago I thought that the catheter could be a long-term proposition and I would have several hurdles to face. At that point I was desparate to have the problem solved. A week ago Monday when thing got unexpectedly much better, I was joyous. For the first several days I was full of energy and felt a new zest for life. I was even periodically breaking out in song, much to the horror of those around me. I was loud and goofy. I really don’t know how Mary Anne put up with me.

After a few days, the excitement had passed. I became less and less patient with the leakage. Then I walked into King Corona and had that talk with Joe. I walked out of King Corona and down 7th Avenue. I had a bit of a skip in my step. I even wanted to break out into song.

Each Day - Drier and Drier

Terry R Watson — Sat, 16 Jun 2007 02:18:00 GMT

6/16/07
Each Day – Better

I’m now in the fifth day since the catheter came out. My urine flow has stayed strong with no signs of blockage. I am so thrilled about that I could just pee in my pants. Oh, I did, whoops.

I still have some leakage problems but it is getting better each day. There are more motions I can do without a leak and more often than not a slight cough or laughter is no longer causing a problem. Part of it is that I have become conscious of the things that bring on the drips so I can purposely tighten muscles. That is often successful.

It is a little embarrassing but I had been wearing depends to bed at night. A really silly sight indeed. No, we didn’t take pictures! I took a chance and went without last night and I was OK.

Every day seems to be a step forward. I never thought I would have such an appreciation for normalcy.

Great Progress ah but A Few Side Issues

Terry R Watson — Thu, 14 Jun 2007 14:30:00 GMT

It has been 3 days since my catheter has come out and things are going very, very well. Sure there are some problems. I am leaking. Bending, squatting, lifting, and sometimes laughing, create a sudden feeling of wetness that you gotta hope doesn’t show. So far, wearing two pairs of underwear and dark pants is getting me by. I found myself in the “pads” aisle of Walgreens yesterday, but I didn’t buy. Why! Two reasons. One reason is that the leakage is getting better each day and the other reason has to do with my own theory of how to train myself to regain full control.

I don’t think I am facing any long-term incontinence problem from the operation. I had some pretty good control in the week after the operation. So I am confident that I still retain the physical ability to control the urination process. I just think that my bladder, urethra, and penis got lazy from all those weeks on a catheter. If I put on some sort of pad, it is too easy to just “let it flow” so to speak. If, on the other hand, I am worried about some visible and uncomfortable leakage, I believe I will regain quicker control of my “drainage” system.

I can PEE!

Terry R Watson — Tue, 12 Jun 2007 02:14:00 GMT

I Can PEE!

The news is good. The urethra lining is healing. There is much less slough material. My urologist, Dr. Helal, says he thinks I might be successful at peeing normally. We are going to try it.

The only bad news is that there is a hole in the urethra lining where it hasn’t healed. This has allowed the formation of a false channel off the urethra. It will hopefully heal over in time but for now it makes self-catheterization too dangerous. So I can only stay off the Foley catheter if I don’t clog. If I do clog then it becomes an emergency and I have to get to the office where they can very carefully put a catheter in.

At this point I have to hope for the best and just enjoy not having that tube stuck up in me and that damn bag on my leg.

Turning a Corner?

Terry R Watson — Mon, 11 Jun 2007 15:00:00 GMT

Today is a big day.

I go in at 3 for a cystoscope – not a pleasant experience. Yes, this is the camera up the urethra. This is the part where I grab hard on the sides of the examining table, grit my teeth, and hope it doesn’t take too long. I don’t seem to have an infection going like I did last time so there should be less pain.

Here’s the treatment plan that Dr. Chinn in California suggested and that I hope is acceptable to my doctor here. If the only problem seen with the cystoscope is urethral sloughing then we will not put a Foley catheter (tube stays in and runs to a bag) back in. I will attempt to urinate normally and carry a intermittent (self) catheter tube with me in case I get stopped up. It is not pleasant to self-catheterize and it carries a risk of the tube being poked into the wrong area but the consensus seems to be that it is better then the infection risk of the Foley catheter. Plus, I really want this thing out of me!

If you are one of the readers who has stuck with me on this BLOG, please wish me well. I’ll update this evening.

More Bag Wars

Terry R Watson — Tue, 05 Jun 2007 17:43:00 GMT

6/05/07

OK, this shook me up.

I just left a meeting at the university. There were 10 of us who work together on a major leadership project. It was a very small cramped room. It was the kind of space that already concerns me, knowing that there is some odor that comes from the urine bag that I am wearing.

An hour into the meeting I had to leave the room to empty my bag. I returned to the meeting thinking that I was good to go for another hour or two. Just as I started to sit down, I felt it. Liquid (urine) was running down my leg. I quickly left the room and returned to the restroom. I had failed to close the screw type valve. The damage was done. My pants and socks had both absorbed some of the urine.

They say that attitude is everything. I could return to the meeting and just watch the reactions as the smell permeated the room. I suppose I could try to find some sort of humor in that. I could picture it as a scene in a movie comedy.

No, I wasn’t there. I didn’t even try to be. A sense of embarrassment and defeat is what hit me. I kind of blurted out that I had to leave and I got out of there as fast as I could. As I exited the room I tried to give Mary Anne a look of assurance so she wouldn’t think anything was wrong. I couldn’t get back to talk to her without stepping over and around a couple of people.

A lot of different emotions went through me as I crossed the parking lot for the car – none of them very positive. I had just failed at this little stab at carrying on my professional life.

It is sometimes hard to see the light at the end of this tunnel.

Conflicting Advice - No End in Sight

Terry R Watson — Tue, 05 Jun 2007 17:38:00 GMT

Here’s the problem. My urethra wall seems to be damaged and there is no clear urethra channel due to blockage by slough (dead prostate material).

Here’s the bigger problem. Every doctor I talk to has dramatically conflicting advice.

Here’s the biggest problem. A mistake in handling this could have long term and devastating consequences.

First some education. There are three types of catheters:

1.   Supra pubic catheter – Enters the body through a hole in the belly and the tube runs to the bladder where it is inserted through the creation of another hole. There is no bag. You try to urinate normally and then any remaining urine is let out through a valve. This is the one they put in during the operation and it was removed a week later.

2.   Foley catheter – the tube comes from your bladder and out the penis. It feeds into a bag that is strapped to your leg. That is what I have had for the last three weeks. I had it earlier but had to get it removed due to severe bladder spasms.

3.   Intermittent catheter – Hang in there guys, I know this sounds awful. This is the one that you put in yourself if you are not able to urinate. You basically stick the tube in your penis and run it up to the bladder. You do this every 3 to 4 hours if you are not draining enough urine. I had this for a week after the first Foley catheter but had to stop because it got to clogged with slough material.

OK, here’s the conflicting advice. Listen to how scary this gets.

My present urologist wants me on the Foley for 4 week segments and to send a scope up the penis at the end of each segment to see how the urethra looks. His partner had put me on the intermittent catheter when I had the spasm problems but then switched me back to the Foley after scoping me and seeing how bad I looked. He said I may be on a Foley catheter for 6 months to a year. He said infections are inevitable and we will have to try to treat them as they come. He said he is not sure if the membrane will heal or if we may have to look at a surgical procedure a year from now.

A neurologist who is an in-law and has dealt with many patients who required catheterization says to get the Foley out of there. He says it will inevitably cause an infection, which could be serious or even fatal. He says I need to be on intermittent catheterization.

A retired urologist who runs a non-profit prostate cancer organization in California says never use intermittent catheterization. He said the risk of poking it into the wrong place is too great. He said you could even perforate the rectum wall, which would create an extreme and possibly life threatening medical emergency. He also said not to use the medicine (ditropen) that I am on. It is used to prevent spasms but he says it relaxes the bladder, inhibits normal functioning of the system and might prevent the expulsion of the slough material. He also says that the Foley catheter is a foreign object in the urethra and therefore inhibits healing and blocks the expulsion of slough material.

A group of physicians in Europe put out a paper on sloughing and said that intermittent catheterization should be the standard approach to dealing with the problem after ultrasound or cryosurgery.

My surgeon in Japan says I should either have a Foley catheter or should get a TURP done. The TURP is a surgical procedure where they go into the urethra and scrape out excess material. My local urologist says he would not do that because with the damage to the urethra membrane wall, he wouldn’t know how far to scrape. The urologist in California says to avoid any surgery if possible because of the risk of incontinence. He said that I have a real risk right now of creating long- term incontinence issues.

Here are the key words that I heard in all that mess: infection, death, and incontinence. It seems any path that one of these doctors recommends is condemned as highly risky by another.

I could be scared, in fact, at times I am. Will all this end well? When will it end?

Catheter Wars

Terry R Watson — Sat, 19 May 2007 04:25:00 GMT

Catheter Wars
Friday, May 18, 2007

Today was an example of how a catheter can create a bad day. The catheter clogged up twice. Once when I was at my daughter’s house planning to go out with the grandchildren. This sent me fleeing home in pain to get my irrigation equipment. Later while going for a very short walk with the kids my tube into the bag came loose sending urine down my leg. Not a pleasant scene.

It has been 9 days now since I had the Foley catheter put in. It is the dominant factor in my life each day but I am managing. By dominant, I mean that I have to take it into account with everything I do.

Today’s incident at Sherri’s house is an example. Shortly after arriving at Sherri’s house I began having some pain and a burning urge to urinate. I checked the bag and sure enough, it was empty. That meant my catheter was clogged.

The only solution is to irrigate the catheter. There is a sterile kit for doing that and you must use sterile water. The kit includes a syringe, which you use to force water into the catheter tube and out the other end within the bladder. This procedure, hopefully, unclogs the system and the bladder is then free to drain.

If this process doesn’t work, you are in real trouble. The pain will keep increasing quickly and dramatically. It is time then, to head for the emergency room and hope they get you in right away with somebody who knows what to do.

Being an educated catheter user, I do know another tact. The Foley catheter can be removed if you know how to do it. However, if the urine does not come out at that point, you must be prepared to self-catheterize.

I started clogging about three days ago and it has happened daily since. It makes it a little scary to get far from home. In the morning I am going to Orlando to attend the Orlando Fringe Festival. Am I nuts? I am bringing a tube for self-catheterization and an irrigation kit with me.

I am going because I can’t allow this to stop me from living my life.

Grasping at "The New Dawn"

Terry R Watson — Sat, 12 May 2007 12:37:00 GMT

I was pretty down yesterday but in the end I just needed some time to work through the feelings. I'm in an emotionally better place today. There is some physical discomfort but, for now, it is very bearable. I have never done well with ongoing pain and the doctor said there will be periods of that. He seems to be expecting infections and spasms to be part of my future. It is hard to think of six months to a year of pain and limited activity that might not even solve the problem. The medicine for the spasms seems to be knocking me out right now but maybe I will adjust.

I need to find an alternative. There has to be another route. I just need to get my head around this and treat it as a battle that I will fight and win.

I'm in Real Trouble

Terry R Watson — Sat, 12 May 2007 04:14:00 GMT

May 11, 2007

I’m in real trouble. My urethra is basically closed off with dead tissue and it looks like I may have a painful, year long fight to try to correct it.

Here is what happened:

Almost three weeks ago I had a Foley Catheter put in to allow my damaged urethra to heal. It was supposed to stay in for six weeks. After about two weeks I started having bladder spasms. It happened on the weekend of course. It was about the worst pain I have ever had and lasted for longer and longer periods over three days. Finally, over the phone at 3am, the doctor instructed me on how to take out that type of catheter. You have to make a cut to deflate the balloon that holds it in your bladder and then pull. Once it was out the pain subsided and I could pee normally, at least for a few hours.

A note of caution for those of you who ever have a Foley Catheter. You have no control for a while when it comes out. In my case it took about 24 hours after it had been in for 2 weeks.

After a few hours of relief the peeing became more and more difficult and pain came back. I went in and they took a sample to check for infection and prescribed some antibiotics.

The antibiotics didn’t help. The system continued its shutdown and I found myself on the phone again with the doctor getting instructions on how to self catheterize. It was that or go to the emergency room on a Saturday night. I was now in excruciating pain from not urinating for many, many hours. I used the tube from my old Foley catheter and pushed it in my urethra until it reached the bladder. Urine sprayed as if from a pressure hose. Again relief, but it was only temporary. I used a self-administered catheter for a week whenever I couldn’t pee. Unfortunately, that became more and more often. I was peeing out sloughing material, which is basically dead tissue, primarily from the HIFU. After a few days I would have to stick the tube in 2 or 3 times to get any urine because the chunks of flesh were blocking the tube.

Finally, it was no longer effective, which brought us back to the doctors office to have my second cystourethroscopy, basically a camera up the urethra. The results were horrible. Even the doctor repeated “oh my god,” three different times. There was so much damaged tissue that, for a while, he couldn’t even find the urethra channel.

His prognosis was for at least six months to a year with a Foley catheter. Even then, it might not heal correctly and we may have to come up with a surgical procedure. However, he said that a surgical procedure would be highly risky with a strong possibility of permanent incontinence and/or other problems.

I have additional risk of cardiac event during surgery with general anesthesia due to my heart disease and sleep apnea.

Tonight is a lonely and depressing night. Both my wife and my daughter are out of town. My greatest strength comes from the fact that my friend Mitch offered to drive over here tonight from Melbourne, FL. That would be 3 hours each way and he would have to be back home by late morning. I couldn’t ask him to do that but it is hard sitting here alone, to be positive right now.

Disenchantment with Doctors

Terry R Watson — Sun, 22 Apr 2007 18:33:00 GMT

I attended a presentation about a cancer treatment approach at a major hospital. The two surgeons who were presenting are well known and respected in the community. The audience consisted of about 30 men who have prostate cancer and about 10 partners. The presentation was well done and very informative. It was my conversation with one of the surgeons and my perception of the handling of the question and answer session that bothered me.

The men in the audience are scared. They are confronting some very difficult issues. They are not necessarily familiar with medical terminology. Yet during the Q & A there was an impatience, a somewhat patronizing attitude coming from the physicians. This occurred particularly when someone asked a question that was similar to one that had already been asked. It didn’t help that one of the docs was periodically checking his watch during the questions.

What I also found disappointing was a discussion I had after the meeting with one of the physicians. I asked if the community had a sufficient number of support groups to address the need. He said he didn’t have a clue. This bothered me. He was doing a potentially traumatic surgery on men but didn’t have any idea what follow-up support existed in the community.

The other thing that was bothersome was his attitude toward the treatment I had undergone. He was very dismissive. He said when the American Urological Association accepts the procedure and there is 10 to 15 years of good American research to back it up, then he will take a look at it. I pointed out that there are 15 years of usage in Europe with research. He responded by saying that he wasn’t interested in research out of some Eastern European journal. I noted his adding the word "Eastern" and what he was implying by that. HIFU treatment and research is actually carried out mainly in Germany, Japan, Austria, and Great Britian.

I left there kind of sad. So many physicians seem to be in their own world, often disconnected from the world of the patients. Medicine doesn’t seem to be focused on the whole person. There is a conceit about their own way of doing things and doctors so often seem more interested in protecting their own turf than in exploring what is best for the patients.

Long Term Catheterization

Terry R Watson — Sun, 22 Apr 2007 04:08:00 GMT

On Tuesday I was excited. I was to get the catheter out. Now, it is not the act of taking it out that excited me. The nurse pulling it out was not the most pleasant of moments. It burned mostly for about two minutes.

My relief was short lived. The the doctor walked in and prepared to send the camera up the same place the catheter had just exited. I dreaded this moment but it had to be done. I winced when he pushed it in but it wasn’t unbearable.

Next came the bad news. As he pushed the camera in he had me look at the screen. My urethra lining has some real damage. He said that if we let it heal as is, the scaring tissue would probably close up the urethra completely. Not something I would want to happen. Dr. Uchida in Japan had told us that this happens to about 16% of the patients. I guess it was not my lucky day.

The cure - six weeks with a catheter in to prevent the urethra from closing up. Six weeks of walking gingerly, wearing loose pants, and peeing by lifting a pant leg.

I was deflated.

A Bump in the Road

Terry R Watson — Fri, 13 Apr 2007 03:50:00 GMT

For days I have had the urgent urinations, weak streams, and pain in the tip of the penis. I wrote it off as normal variations along the recovery route.

Today I could no longer ignore it. Last night I got up every 30 to 45 minutes. At 5 a.m I dreamed I was peeing again at the toilet. I was peeing all right, but not at the toilet. Disgusted, I got up and went downstairs.

By 10 a.m. I peeing small amounts every 20 minutes and it hurt. I called the doctor.

Sometimes you lose control of events.

Within an hour I was at the doctor’s office and we knew I had at least two problems. I had an infection and I was retaining large amounts of urine. The catheter came next. That tube looks so much bigger than the hole in which it is put.

A catheter is uncomfortable. An infection hurts. A catheter in an infected penis is not to be desired.

Antibiotics will hopefully knock out the infection. Tuesday I will go back in and they will run a tube with a camera on it up the urethra to see if they can find the cause for the retention.

This will not be fun!

My Talk to A Support Group and What They Taught Me

Terry R Watson — Fri, 13 Apr 2007 03:29:00 GMT

Tonight I spoke at a prostate cancer support group. For confidentiality reasons I won’t disclose the exact location. My wife, Marry Anne and friend, Don Barco, went with me. I talked about breakdowns I have seen in our medical system and about my ultrasound (HIFU) treatment in Japan.

More importantly, we met some brave and inspiring men. On the way there I was feeling a little sorry for myself due to the reversal I describe in the next post. I soon realized how fortunate I am in comparison to so many others who have been on this journey.

These men had seen it all. Several had lived through multiple recurrences and multiple interventions. Many have had years of their lives turned upside down.

Perhaps most heart wrenching of all were the men who had lost their wives or partners directly or indirectly because of their cancer. These are the men are taking this journey alone, without a partner. Why? For some, there is fear that no women would want a man who can’t “perform” or a man whose future may be uncertain.

Yet these men are there. These are men who have been there time and again when others have needed them. I told them that I was writing a book to help others with cancer get through the decision making process. When asked if they would help by being interviewed, these are the men who signed up without hesitation.

Someday soon, you will hopefully get a chance to read some of their stories.

More on Erectile Dysfunction

Terry R Watson — Tue, 10 Apr 2007 19:46:00 GMT

I have talked at length to three men this past week who went through either radical protectomy or laproscopic surgery over a year ago and are struggling with erectile dysfunction. I have good news to report for myself in this area but I but I do it with mixed feelings after hearing their struggles.

I seem to be recovering some functioning. It is a kind of half erection but this early on I think it is a good sign. Uchida claims ED problems in about 25% of his HIFU patients. I take this statistic with a grain of salt, not because of Uchida but because I believe that this is an under-reported problem.