My name is Paul McArthur. I am a single guy, never been married. I was born in June, 1960. I was 44 years old when I was diagnosed with prostate cancer in August 2004.
I had a physical in 2001. My doctor ordered the usual blood work. At that time I was 41 and so he did not order a PSA. However, by some miracle a PSA was performed. I didn't know it at the time, but, men should start having a PSA test at the age of 40 if their father has Prostate Cancer. My father was diagnosed with Prostate Cancer in 1989.
The results of the first test came back a 12.0 ng/ml. Here is typically how they react to your PSA when they find out what it is: 0 is "Good", 0-4 is "Ok", 4-8 is "We need to watch this carefully", anything over 10 is basically... "You're not dead, yet?"[What Paul says here may well reflect the views expressed by some doctors, but in fact PSA values very much higher than 10 are recorded, with men at that level surviving for many years - see Survivor Stories and use the PSA search criterion - you'll see the top PSA recorded as 7,000 ng/ml - somewhat over 10.0 ng/ml!]
The doctor ordered a 2nd PSA test. The results of that test were a 10.0 ng/ml. So, he ordered a biopsy. I went to the urologist (a.k.a. the barbarian) he recommended. That urologist took 6 samples. They all came back negative.
The procedure was uncomfortable. It's like using an electric cattle prod a.k.a. "the probe" along with curling iron a.k.a. "a spring-loaded needle/harpoon". It's not all that painful. But, it is uncomfortable. I was ready to go home after the 3rd sample. I was awake throughout the procedure. There was no pain medication or anaesthesia.
One important thing to note is he only took 6 samples. A true Gleason Score is based on 12 samples, that's 2 samples from 6 different areas of the prostate. [The number of needles used in a prostate biopsy varies. Six needles was the standard for many years and still is in many countries. The practice in the USA has moved to use a minimum of 12 needles, although this is not a universal rule. Some practitioners also use more than 12 needles.] My only thought is he didn't bother taking anymore samples because I was only 41 years old. At the time I didn't know any better.
I decided that it would take a couple of years before I had another biopsy. I waited three years until a co-worker gave me the "guilts" and convinced me to go have the blood work done again. The blood work isn't that big a deal. It's the biopsy.
I went to my general practitioner in April 2004. The 1st thing he did was the DRE (Digital Rectal Examination), you know... turn your head and cough. That's not that bad. It's the biopsy that I didn't want to face. Unfortunately, the DRE can cause your PSA to be elevated. They didn't tell me that until AFTER the DRE. I had to wait a week to give the PSA a chance to go down before I could get the blood work done. I didn't get the blood work done until May because my mother was diagnosed with a common bile duct tumor and I went to Tampa to support her during that period of time.
I had the test done and got the results back in June. The PSA was a 10.4 ng/ml. The G.P. wanted another biopsy. I wanted another urologist. This time I went to the one my father used. Dr. Kaz said he was going to do a minimum of 12 samples. I said, "You're going to put me to sleep, aren't you?" In his Indian accent he said, "Yes. I do not want to have to chase you around the table." You got that right, buster. I had the biopsy in July.
He put me to sleep for the biopsy. He did an awesome job. The experience was infinitely better than the first time. He not only biopsied the prostate he also did a cystoscopy. Never trust anybody who puts you to sleep.
After the biopsy, they tell you there's going to be some blood. There's no other explanation to go with it.
Well, there are 3 bodily functions, 1) pee, 2) poop 3) ejaculate. The first thing you'll find out is there's blood in your urine. After the biopsy I had blood in the urine for about 2 days. I had to 'clean' the system out prior to the biopsy so, it took about 2 days before I really 'pooped'. There was blood in the stool for about 2 days as well. Well, after freaking out over #1 and #2 you can imagine what it's like to try #3. It took me a good week or so before I tried #3... and wow. What usually comes out kinda milky white was ruby red. Talk about freaking out. It took about 2 or 3 more ejaculations before all of the blood cleared out of my system. They just don't tell you that... [The amount of bleeding and the length of time it lasts varies considerably from man to man. Some men have barely a tinge of red, while others have blood in urine and ejaculate for up to six weeks.]
I got the results of the biopsy in August. They came back positive. The Gleason score was a 6 well on the way to being a 7.
Six areas of the Prostate were harpooned, I mean 'sampled'. You'd think Captain Ahab was going after Moby Dick, but, I digress... (c:)~
Here are the six areas and the scores I received. This is so typical. I usually tend to score high on tests. Ha ha.
1. Right apex - 7 (4+3)
2. Right mid gland - 7 (4+3)
3. Right base - 6 (3+3)
4. Left apex - 6 (3+3)
5. Left mid gland - 6 (3+3)
6. Left base - benign (0)
Dr. Kaz ordered a CT scan and bone density scan. Both came back negative. He also suggested surgery. His 'specialty' was the traditional radical prostatectomy.
I did the usual "I want a 2nd opinion" routine. I consulted a urologist at Mayo Clinic in Jacksonville as well as one at Shands Hospital. Both said I was too young for anything but surgery.
I wasn't ready for surgery. I had been training for a rowing competition in October. So, the Dr. Kaz gave me a "4 month" shot of Lupron on September 7, 2004 to slow the growth and hopefully shrink the prostate.
Dr. Kaz recommended the Lupron. The Mayo urologist was against it. Dr. Locke recommended it. Mayo said the Lupron causes the prostate to become fibrous and more difficult to remove. [Like so many aspects of PCa diagnosis and treatment there is considerable disagreement on this aspect of neo-adjuvant hormone therapy. Some surgeons will not operate on men who have had the hormone therapy: others regard it as essential. The studies quoted in a recent summary (large pdf file) show no advantage for neo-adjuvant hormone therapy with RP. Other studies demonstrate that Lupron can change the pathological profile of the cells, making them appear to be more poorly differentiated - i.e. a higher Gleason Grade.] I can appreciate his comments. I noticed some improvement urinating after having the shot.
There are several things about Lupron they don't really go into much detail about. The first is Lupron causes chemical castration. What does that mean? Let's just say that after about a month of having the shot my ejaculate was just about nil. They didn't tell me that would happen. I just figured it was 'good' preparation for what would happen after the surgery anyway.
I competed in the rowing competition and scheduled surgery for November 16, 2004. I opted for a laparoscopic radical prostatectomy. Nobody in Jacksonville, FL did that type of surgery at the time. So, I opted to go to Ocala, FL and have the surgery performed at the West Marion Community Hospital in Ocala. The doctor was Dr. Russell Locke with the Urology Center of Florida . The surgery was scheduled for Tuesday, November 16th, 2004.
The surgery was supposed to last 2.5 - 3.5 hours. It went over 4 hours. I was still released the next day.
The surgery was on a Tuesday. On Thursday I felt like I could go to choir practice and make it through the entire 2 hour practice. My dad went with me. I monitored the bag strapped to my leg to make sure it was 'draining'. I didn't know what to expect, though. Well, it should drain constantly, even if just slowly. I didn't use the markings on the bag to keep track. Towards the end of sectionals I snuck out with my father to check it. It looked like it stopped draining. The what-to-do-after-surgery paperwork didn't cover that.
I had enough sense to go to the emergency room. By the time they got around to me I was ready to get relieved... big time. They put in 60 cc saline solution and got back 700 cc. I was ready.
On Friday my body said, SLEEP!!! I obeyed. If I was awake I was eating. If I wasn't eating I was asleep. That was it. I did the same thing on Saturday.
On Sunday, I finally took a shower. Oh!!! You never thought of that, did you? At some point your nose let's you know. (c:)~ I watched church on TV. But, that afternoon I DROVE myself to choir practice. I was feeling alive and awake again.
"I" drove to Ocala with my father a week after the surgery to get the staples and catheter removed. "I" drove down. It's about a 2 hour drive.
Talk about a humbling experience.
They asked me to strip from the waist down and cover up with this oversized piece of paper they called a towel. The nurses were very professional and considerate of what they were doing. I never was embarrassed. It was just another process I had to go through. And, I was ready to get rid of the catheter.
The one nurse removed the staples first. She did the first staple before I realized that she had removed it. I thought there would be a lot of tugging and ripping of flesh. It was effortless.
The other nurse was in charge of removing the catheter. Talk about weird.
A Foley catheter is held in place by a little balloon up inside the bladder. The moment she released the air I could tell... and it felt good.
The most humbling part of the experience was about to come. She 'irrigated' me with 150 cc Saline solution, I think. She said the reason for that was to make sure I still 'drained' once the catheter was removed.
She did not mess around with the removal. She didn't try to prepare me much... which I probably would've screwed up anyway. She just went for it.
The memory lasted longer than the 'pain'. It wasn't that painful. But, she looked like a dominatrix snapping back her whip... not that I know anything about a dominatrix or a whip. The whole purpose of doing it like that, I'm sure, was to minimize the exposure to bodily fluids.
Then, the fun began. Oh, you thought THAT was the most humbling part of the experience. Wrong.
Those of you who've changed a baby's diaper or have seen the water fountain with the little naked cherub peeing will know what I'm talking about. The nurse had a plastic urinal to catch the 150 cc that came out. But, talk about having absolutely NO bladder control. Gee. And, to make matters worse… she didn't have the urinal 'lined up'. Oops. Sorry. It was messy.
I kinda missed that internal catheter now.
The nurse gave me two pads to go. These were manly pads. Women will know exactly what I'm talking about.
She asked if we were going to stick around Ocala or go back home. That shocked me. I must've missed something. We were going home. She seemed kinda hesitant. The one reason was she said they needed to know that I was still 'draining' within the next fourhours. If I wasn't then I would have to return to Ocala and have the internal catheter reinserted. What? Ouch. I don't think so. We left.
Before we left Dr. Locke stepped in and spoke to me for a few minutes. He said he was very concerned during the surgery. It was a difficult surgery. He said he did not remove the lymph nodes, in part because of the time it took to get the prostate out, plus he just didn't feel that their removal would contribute much in the spread of cancer or the detection of whether cancer has spread.
He said the cancer was not encapsulated... meaning that there was a 'break through' on the left side, it was not all contained within the prostate. However, he said the margins were good.
The final Gleason score on the pathology report was an 8. If you'll remember, the previous score was a 6/7. Also, if you will remember, the score is the sum of the ranking of two samples. The two samples were a 3 and 5. So, one sample was very 'bad', the other was so-so [Paul uses the term 'two samples' in his description of the evaluation of the Gleason Grades to calculate the Gleason Score. In fact the Score is calculated by looking at two focii in the same sample - see Gleason Grading for more detailed information.]
After he spoke with me I left with my father. Talk about "draining" a.k.a "leaking". We stopped half way between Ocala and Stark so I could get out and leak. Then, we stopped in Stark for lunch. I used the only pad I had left. It was not getting pretty.
After lunch we stopped half way between Stark and Jacksonville. Again, I just leaked.
By the time I got to my parents house I was just about soaked. I grabbed my stuff threw it in the car and headed for Walgreens before they knew what was happening. Walgreens had just ONE 52 count package of pads for men. It had MY name on it.
Oddly enough that was the lowest point in everything I'd gone through. I came the closest to being depressed at this point in time. But, Phillipians 4:8-9...
Pads suck. I put up with them for just 2 days after the catheter was removed. After having Thanksgiving dinner with my family I went home and started surfing on the Internet.
I started with the word catheter and that led to External Catheter.
An external catheter is, essentially, a defective condom with glue. It has a 'tip' that connects like the internal catheter to a tube that connects to a drainage bag. It works very well, most of the time. You can go look up the 'parts' at this web site to see what's available.
I was blessed in that I found the information on the Internet and found EXACTLY what I needed at a small pharmacy just down the road from me. That place is awesome. Unfortunately, Walgreens and CVS will eventually force little pharmacies like this out of business. And, Walgreens and CVS don't carry these supplies.
The external catheter comes in various shapes, sizes and compositions. The shapes don't have much impact; I believe, other than to avoid copyright infringement issues.
There are several 'interesting' things about external catheters. The first is trying to find the size that 'fits' you. The Hollister brand generally has sizes that are 1 mm larger than the Mentor brand. Ok. Who'd want a 'mentor' like this?
For those who have ego's the size of one of these things… get over it. Here's a recommendation. Don't shoot for an exact size. There's a little problem that they don't tell you about. Shrinkage.
Yes, shrinkage. If you buy something that fits exactly right you'll find that by the end of the day that shrinkage kicks in big time and it may have a tendency to come off. The technical term would be "system wide failure". So, go with one size larger than what will fit you exactly. (I was going to make a comment about playing a game called "Where's the hot dog" but, decided not to.)
I would highly suggest one thing. Shave. Hair does bad things for sealing things up. You'll want direct contact with as much skin as possible.
One thing about the 'adhesive', you can glue a car together with it. You'll want to take a bath each night to try and wash the residue off. Trust me. You'll be tempted to over do things after the surgery. A nice hot bath does wonders for soreness.
You might ask, So, just how do you measure up? You got it. Try this site on 'for size'.
The Hollister feels more 'natural'. The Mentor feels more 'plastic'. Both work well. The Mentor gives you the option of backing down 1 mm if you need. The Hollister gives you the option of going up 1 mm if you need.
Latex versus Non-Latex. The only issue I've had is with the latex leg straps that hold the bag to your leg or calf. If you attach the strap too tightly then you may have an allergic reaction. If so, try applying hydro-cortisone cream and switch to the other leg for a few days. Or, cut up a paper towel and put it between your leg and the strap. They do make fabric leg straps. They attach with Velcro. Those work fairly well.
One thing about the leg bag... buy the one with the Flip-Flo attachment. Otherwise, all it has is a little green cap on the bottom of the bag… and that gets VERY messy if the cap comes off accidentally. Trust me. It will. On the trip back to Ocala I was planning to do a flow analysis. I stopped by the hospital to speak to somebody before I saw the doctor. When I got in the car my shoe was soaking wet. The cap had come off. I tried to salvage the situation but, I peed all over myself. Needless to say, I was VERY emotional and couldn't handle telling the doctor what had happened. I survived and went back later that week. I just haven't done a flow analysis since. Let's just say I could hit a target about 6' away now.
Wear loose pants. Buy a size larger if you need. Tight fitting pants lead to system wide failures. Buy something like flannel sleepwear for at home... work out pants for outside. I would also suggest using a pad for backup… just in case.
Question: Boxers or briefs? Answer: During the day - Boxers. The external catheter works well during the day. Don't forget the pad for backup. At night just wear briefs and the pad.
Your doctor, or nurse, may not approve of you using an external catheter. That was the reaction the nurse had when I told her what I was doing. I would've fought her tooth and nail to keep mine. But, it never came down to that. The issue here is infection. Don't want to get an infection down 'there'. That's where nightly baths will help, I believe. Fortunately, the doctor didn't have any problem with that.
On December 29th I had some bad news. I didn't have any STD anymore. So, I had to go back to work! Hah! Where's your mind? STD=Short Term Disability. My 6 weeks were up. I had to go back to work.
I struggled with incontinence for two or three months. It wasn't until I got down on my knees and started praying again that the flood gates closed. I'm serious. The first day I started praying was the first day I regained continence.
What about sex? Let's just say, "What sex"? After the surgery it took me about six months to even TRY to do 'it'. I was on a business trip and there was something a little risqué on TV when the motor kinda got jump started. But, it was anti-climatic. It was like the orgasm stopped before it was even finished. It was weird not having anything come out. I realized just how much ejaculating contributed to the orgasm. Since ejaculating wasn't happening anymore that kinda minimized the fun and the orgasm.
I counted the number of times I tried to do 'it' during 2005. I tried twice in June, September and December. After that, I haven't kept count. Suffice it to say that I don't think I've done 'it' as much since then. Don't get me wrong. I like it better this way. I know what I miss but, I know how much I really liked it before. This is just better for me.
After the surgery the Dr. Kaz continued with the Lupron. It just so happened that they'd JUST come out with a subcutaneous injection of Lupron in January 2005. That is simply a little vile about the size of 2 or 3 short toothpicks that fits just under the skin.
What that means is less pain and less emotional 'spiking'. Instead of 3 or 4 shots once a year I would just get the vile replaced once a year. The Lupron would be slowly released throughout the year.
The "4 month" shot cost about $1,500. The sub. inj. cost $6,000. Insurance has been goofy. They would pay all but $1,000 each year except last year (2007) they paid in full.
I had a sub. inj. in 2005, 2006 and 2007. Dr. Kaz was able to remove the 1st vile in 2006. However, in 2007 I had put on some weight and consequently he couldn't "squeeze" out the old one.
Dr. Kaz told me he wanted to discontinue the ADT this year (2008). I've had 3 years of PSA's less than 0.01. I'm not sure if I want to get rid of my 'insurance' or not. I have experienced 2 of the side effects, hot flashes and mood swings. The mood swings really aren't mood "swings". I just have to 'check' my thinking at times and think positively. I just tell people I'm in touch with my feminine side.
The good news is... I'm happy this way. I wouldn't change a thing... seriously. God is good.
I've posted my 'diary' on my personal web site... under the Prostate Cancer link. However, this pretty much covers everything that's there, I think. During this time period my mother was diagnosed with a common bile duct tumor. She died on February 3, 2005, just after my surgery. Personally, I think she concentrated more on me and my problems than her own. She was a saint. Her mother died shortly after that. Her mother had breast cancer about 30 years ago and dealt with Alzheimer's. My father just passed away a week before Thanksgiving last year (2007). He was diagnosed with prostate cancer back in 1989. He took the watchful waiting approach and did take some Lupron at the suggestion of Dr. Kaz. But, he hated it. He said it made him into a girl. So, he stopped taking it for a little while last year. He didn't handle the mood swings very well. He was born in 1933 and was 74 years old when he died.
I am doing fine other than putting on some weight. I'm 6'1" and weigh about 220 lbs. My G.P. has me taking liquid vitamins, glucosamine, calcium, vitamin D and fish oil. I just had some blood work done at the end of January (2008). The G.P. put me on 50,000 IU of vitamin D for a little while. I have 10 pills and take 1 twice a week. I really needed the glucosamine for the arthritis symptoms I was experiencing. They went away once I started taking the glucosamine.
I started having some problems with kneeling back in December. I mentioned that to my chiropractor and she said the scar tissue was probably cutting off the circulation. She started working on that and I don't have that problem anymore. She's awesome. Of course it felt like she put a spear in my groin but, it was quite effective.
Oh, one last thing. It's something that is on my mind a lot and is just irritating. I quit my job on September 11, 2006 and bought a franchise called "Goin' Postal". If you want to see me then go to www.goinpostal.com and look up zip code 32217. After I quit my job I found that the insurance companies would not give me health insurance for 5 years after my surgery. Fortunately, I have COBRA insurance and my former company, Blue Cross Blue Shield of Florida will convert the policy to an individual policy at the end of next month. The thing is… am I really going to die within the next year and a half? Will discontinuing the Lupron open the flood gates again? It's been a little over 3 years since the surgery. (November 16, 2004 to February 2008) I'm kinda living life like I only have a year and a half left to go. I'm starting to wonder what I'm going to do if I exceed that time limit. [Statistically, Paul has many years ahead of him. The median age for PCa deaths in the USA is still in the mid-80s, so half the men who die of the disease are over that age. More than 90% of the deaths are men over 70. Paul is coming up to 50, so he's probably got 20 years or so!! See also The Elephant In The Room.]
I mean I can stay alive and struggle with all of the problems we have here on earth or I could die and go to heaven and not worry about them anymore. What's the big deal, then?
I go for another PSA in a few days, when I get around to it. Then, I have another appointment with Dr. Kaz. He'll just say hi and tell me what the PSA is now. We'll see.
Last year (2008) my urologist decided to discontinue treatment via Lupron since my PSA had been less than .01 for the last 3 years. I felt like he was taking away my safety net. However, things have been fine. I am now halfway into year #5 (since the surgery).
Back when I first was diagnosed with Prostate Cancer I felt like I had a death sentence over my head... especially since I can't get Life Insurance. I don't need life insurance but, I've applied several times just to see if anybody would cover me. I've been rejected 4 or 5 times, I think. I've had to rethink my thinking. I was like "Well, if I'm gonna be dead in 5 years... might as well live like it.". Well, it doesn't look like that's gonna happen. (Darn.) (c:)~
I quit my job on September 11, 2006 and bought a franchise store called Goin' Postal. I love the store. I'm not making any money but, I'm kinda breaking even right now. Right now I'm more concerned with LIVING and not having any money than dying. I can't win for losing. (c:)~
I'm on Facebook. I started a Prostate Survivors group. I haven't done anything with it. I just created it... because. (c:)~
That's about it for now.
In response to a reminder which said in part "If we do not hear from you we will assume that you no longer wish to participate in this site and may remove your story." Paul said:
No longer wish to participate? Are you nuts? (c:)~ This site is a gold mine. And, yes, I enjoy reading about the long term outcomes myself... so, here's an update, since you asked.
November 16, 2009 was my 5 year anniversary since the surgery. I honestly never thought I'd make it to 5 years... given the way the surgery went. However, God is good and still has plans for me, I guess. My PSA is still less than 0.001... I think. We've gone from twice a year checks to one a year.
Oh, please. The surgery wasn't all that bad. The recovery just took me a little longer. I was concerned since the surgeon didn't remove any nodes. My local urologist put me on Lupron for several years. That may have helped. Who knows.
Where am I today? Well, I'm in trouble. I started my own business after the surgery. I never really planned on surviving. So, since I'm surviving I guess I better come up with a new strategy. That's a blessing.
How am I doing physically? Well, ok. I've put on some weight. That's not all due to the surgery. I could stand to take off a few pounds. I could start exercising again. I'm just not motivated to do that. I was like 200/210 lbs before. I'm more like 220/225 now. I'm 6' 1" tall.
I'm letting my beard go. I'm trying for the Santa look... or for a part in next years' Passion Play.
How am I doing sexually? What's that? For me it was a blessing. It's like I REALLY used to enjoy sex... a little too much... well, ok... way too much. Let's just say I've gone from 100 mph to 0... maybe 100 to... 3? Just not much there anymore. And, I like that. It's something I had to prepare myself for before the surgery and it's something I've accepted with no regrets. My urologist suggested, offered, some drugs to enhance things... but, I'm good. I've got more on my plate now than ever before.
I dropped my insurance coverage earlier this year. Or rather, they dropped me. I was late paying and I guess they just didn't want my business. I was paying $500 a month. So, where does that leave me? Well, I guess I'll just have to trust God more now.
Am I a little paranoid since the surgery? Yes, on occasion I get that way. I may have a tweak in a muscle or a bone some where and then I start thinking... OH NO! Cancer! Then, I go to the chiropractor and she makes the 'pain' go away. I also get a massage every once in a while.
Another milestone I just passed was... turning 50 back in June. I never thought I'd see 50. I am amazed.
What is in store for the next 5 or 10 years? I dunno. I've thought about doing ministry work... like going to the Phillipines. I just don't think I could stomach the food. Plus, I'm just getting older... It takes money to get older, doesn't it?
I am grateful for this site and the stories they let people share. I am thankful for the stories that everybody shares. I especially like hearing the stories from those with long term outcomes. I hope they keep writing stories for years and years to come.
It's already been a year since my last update? Well, I'm still kicking. It's been 7.5 years since the surgery. Guess the life and health insurance companies don't know everything.
I'm surprised I'm still alive... not because of the severity of the diagnosis or the prognosis of the doctor. The reason I say that is it's quite difficult getting any health insurance, let alone any life insurance, on your own. I guess if I went to work for another company then, I could get some. It is just very hard when you're on your own.
The YANA administrator said one of the two questions people are most interested in is the long term effects of my treatment.
The long term effects? Well, nothings changed much since the operation.
Erections? Gone. Incontinence? Gone. (Yay) Sexual desire? Hmmm... I can't say. I'm not having sex with anybody and not actively looking. If I were looking then my main concern would be... do I have any or not? Since, I'm not looking then, I just can't say.
An odd thing that has happened since the surgery... my hair grows really really slow now. I still have the beard. I was in the Passion Play, again, this year. However, I was concerned my beard whether it was going to GET bushy or not. It did, finally. I think it just took a lot longer to grow than normal. I'm not trimming my beard near as often as I used to.... and, I mean... I can go 3-4 months before thinking about it. The same thing goes for hair cuts. I used to go once a month... now, I can go 2 or 3 months. I just noticed today that my hair is getting to be salt and pepper. My beard's been white for several years now. I'll be 52 in June. I've always looked older anyway. So, it doesn't bother me.
My chest hair is minimal. That boggles my mind. There's no hair on my stomach... but, I don't remember what used to be there. I was never really 'hairy' hairy... but, I did have something. Now it's really kinda... not there... only a little patch of short hair in the center of my chest. I do remember it being longer.
You could say I have man breasts. I don't think that's due to anything but, lack of exercise. I'm up to about 230-235 lbs. My knees are starting to complain.
I haven't had Lupron in about... uh... 4-5 years? I don't remember. It's been 86-89 degrees outside this week. Either the a/c isn't working very well in the store or I'm still getting hot flashes. I asked my employee today. He said it wasn't hot in the store. Guess it's just all me, then. Oh well.
My urologist asks me each year... do you want some Viagra? I'm like... no. I'm good. I know most people will find that comment strange. But, for me... it's good. I like being this way better than before.
Am I eating any different than before? Well, if I am it's not because of the cancer. I mean in the last 7 years I've learned how to cook salmon on the grill. I LOVE SALMON! Oh my goodness! I had salmon tonight. I had it twice last weekend. I'd eat it every day if my schedule allowed. I have a cheeseburger and fries once a week... maybe a chicken burrito... grilled chicken in a pita, etc. I'm not doing good with having a variety of vegetables. I try. It's just hard for me to do. I am eating blueberries when I can. I used to never eat blueberries. I try to have variety in my diet but, I'm single and I tend to go with what's easy. (I hate cleaning dishes. But, I do like to cook.)
I used to be paranoid over every little twinge, ache or pain in my body. I was like... it's cancer! That's subsided. However, I wouldn't say it's gone completely away. I guess that thought will always be there to a degree.
Overall? I'd say I'm about the same as I was before the surgery health wise... except for the things I mentioned above... the weight, the lack of exercise, etc. All in all I'd say I'm doing very well.
I don't have an earth shattering update. But, I do have something.
I was looking up support groups where I live... not because I needed to go but, just to see if anything existed. I found this page on the American Cancer Society site... an area called Man to Man.
I was reading through the first issue of a periodical Man to Man News they published this year (2012).
I found something under the section called "Realistic Expectations about Prostatectomy" that I'd never found before. Here's a summary of the expectations they listed. There's more info in the publication:
- Lack of bladder control
- Not being able to get an erection
- Changes in orgasm
- Decrease in penis length
- Inguinal hernia
I knew about most of these but, I didn't know about the last two... in particular the one about decrease in penis length. Their comment was "doctors don't know what causes this". [How about cutting a bit out of the urethra when you remove the gland?]
Ok. NOW ya tell me? I was thinking I was just crazy. Now I know. I'm not. It's ok. But, I am tempted to go to a flower garden and take of my clothes and pretend I'm a little cherub.
This just goes to show that doctors do a poor job of communicating. They don't have good informational material to hand out to their patients. They do try to highlight the important things.... I'm sure. It's just like... I have to find out certain things? Thanks...[We ran a couple of MiniPolls some time back on what men were told about what are referred to as 'minor side effects' - see What Were You Told?]
Has it been a year already? Wow.
No issues to report. My health is just the same... pretty awesome.
I have started a new sport. I was sitting around, getting fat, having a pitty party... when somebody posted a comment on Facebook. Jacksonville has a dragon rowing team! Yeah! I've wanted to do dragon rowing for 10+ years. We finally have a team. They're one year old.
Dragon rowing is awesome. It wears you/me out. I just reached the one month milestone. I would go home after every practice feeling pretty good but, tired. The next day I was just slap worn out. It'll kick your butt.
I'm almost to the point where I can go an entire practice without stopping and resting, a couple of times. It's daunting because everybody else in the boat has been doing it for a while so, they've acclimated to the sport.
I'd recommend dragon rowing.... just have a good chiropractor and masseuse in your back pocket. AND, above all else, switch sides during practice. Don't paddle on one side the entire time.
One of the side effects of prostate surgery, they say, is getting overweight. I understand why.
When reading up on the side effects of the surgery please understand... the side effect is not necessary due to the surgery. Becoming overweight is not something that's caused by prostate surgery, I believe. It is caused by the changes that happen to your body in conjunction with your inability to change or realize the need to change your eating habits.
I was hovering at 227 last year.
My church, the Church of Eleven 22, called for a 21 day Daniel Fast. I had never tried to fast from anything before. I quickly learned a lot. I learned that the best thing to do on a Daniel Fast is to walk around the edges of the grocery store and to not buy anything on the isles.
Why? Sugar. Practically everything on the isle has sugar in some form or another. Sugar is put in the product to make it taste good. Think about it. If there was no sugar in the product then it would taste horrible. Therefore, just buy fresh fruit and vegetables for the Daniel Fast and you'll be good.
We were encouraged to not be legalistic about the fast. So, my compromise was a certain pizza... one with pineapple, cranberries and mushrooms... and on occasion, basil pesto. That is still my favorite pizza now.
That was last year. I may have lost a little weight but, not much and not continously.
Fast forward to last month, June. The Jax Fire Dragons is a fat team. I'm just being honest. We're fat. You can't be a fast, competitive team if you're fat. You can still have fun and get a lot of hard work... it's just that, if you are fat the boat's going to weigh a lot more. Think about it. 20 people in a boat. They're all 30 pounds overweight... that's an extra 600 pounds of weight we have to move in a race.
So, the president of the club encouraged me to try the Atkins diet. I was skeptical. But, I realized after the Daniel fast last year that I was overweight for a reason... I was on a see food diet and ate whatever I saw.
I tried eating just a few things the first week. I eliminated variety to simplify my life. I ate a deviled egg, a 1/3 pound angus burger with a slice of cheddar cheese on top, and some nuts during the day. I had burger for breakfast, lunch, and dinner. I put mayo and mustard on top. I didn't want to eat a lot of eggs. Plus, I drank water.... more than usual throughout the day. I lost weight... about 4 lbs. The first week. I was shocked. I felt good. I had a low grade hunger feeling... nothing overwhelming but, I figured that was a sign my body was working at losing weight.
I repeated the process the next week. This time I added a pickle with my hamburger. I lost 4 more lbs... or something like that. I think it was 10 lbs in 2 weeks.
Mind you... I wasn't starving and I went out to eat with 2 friends, one on Tue and the other on Fri. On Tue I ordered a meatball for dinner. It was the size of my hand. Oh, yes... for variety, I ordered a meatball to go as well. I would eat 1/2 the meatball and feel satisified for a good long time. Then, I'd eat the other half the next day. I would not eat the sauce, though. With my 2nd friend I'd order a burrito with NO RICE. It would have meat, cheeze and black beans. Again, I'd eat 1/2 and take the rest home.
I actually gained 2 lbs doing this. I came to the realization that I believed the lies I was telling myself. "It's ok to eat that." "That's not much." "It's not a big deal."
I kicked myself in the butt and got back on track. This week I've added 1/4 c of lima beans... for carbohydrates. Tomorrow I weigh in again.
The Atkins diet is not just about eating meat. It's that way for the first 2 weeks but, then you add to that.
What I've found is... I can eat like a pig. I have eaten like a pig. I can eat less and not over eat. I can cut out sugar and not feel bloated. I don't have to have bread.
In short, the reason a side effect from the surgery is gaining weight is because our metabolism goes down and we need to adjust our eating and exercise habits to accomadate our body. So, don't believe the hype in what side effects WILL happen FROM the surgery. Some if it is you just adjusting your lifestyle to avoid the side effect.
I've been dying to write this for some time now but, just couldn't find a way to get 'er done. So many thoughts and emotions. Wow.
Last year, Sept 2013, I competed in my first Dragon Festival. Coach Joe needed to know everybody's weight. I told him… 226 lbs. I know that now because we're getting ready to compete in the 2nd Jax Dragon Festival this weekend and Joe wanted to know our current weight. I thought to myself… what was the answer last year? So, I went and looked it up.
After the Jax Dragon Festival we competed in Orlando. Then, in November we raced in Tampa. One of the race organizers looked at us and said "You're a heavy crew". Uh, thanks. We're fat. Got it. He was right.
After that race Joe challenged us to come up with a goal weight for 2014. I gave him a silly number… 217 lbs. I thought there was no way but, if there was then that would be an easy goal.
January came and went. I didn't change anything. February came and went. No change. March. No change. Nobody on the team was doing anything as far as I knew. April… May… nothing. Finally, in June Joe stood his ground and told us we had to get serious.
He started weighing us. I weighed 238 lbs. I know it was 238 lbs because I researched things on the internet and found that 240 lbs was considered obese. I had to face the fact I was just 2 lbs from being obese.
I asked Joe for his input on what to do. He gave me something simple. It was very simple. He said to eat meat for one week. That's it. Nothing else. He said that would get me started. Then, I could slowly add some other things… ie. Carbs. I know… that was the Atkins diet.
I went to Publix and bought a package of frozen Black Angus burgers from Publix. Joe said I could have cheese and eggs and I could have mayonnaise and mustard as well. That's where I started. I precooked the hamburgers added cheese and then pulled them out of the fridge and reheated them when it was time to eat.
I also hard boiled eggs. In the morning I'd pull out a hardboiled egg and make a deviled egg. That was breakfast. Then, I ate a hamburger patty with cheese for lunch. I ate the entire patty the first time. After the first one my appetite was pretty much killed. I realized I could eat ½ a patty and feel satisfied. I put some mayonnaise and mustard on top for added flavor. I also ate mixed nuts in between meals if I got hungry. I think I lost 10 lbs the first week.
After the first week I tried adding spinach and mushrooms. That was good. I wish I kept a diary. I would go to Carmines once or twice a week. I realized meatballs weren't good for losing weight. But, they taste so good! They are made with bread. That doesn't help you lose weight. I had to avoid their lasagna as well. I LOVE their lasagna. I would get a slice of pizza with pineapple, cranberry, mushrooms and basil pesto.
I kept the diet simple. I didn't eat a lot of different things. I slowly tried different foods to give me some variety. I've tried things like ford hook lima beans, corn, succotash, cantaloupe, grapes, raisins, etc. I found that I just had to watch sugar and bread. I think those are the culprits to weight gain.
At the end of August we weighed again and it took me awhile to figure it out. I just wasn't paying attention to any of my previous weights during the summer, except for the 238 lbs in June. At the end of August I weighed 208 lbs. I thought that beat my goal of 210 lbs… but, I forgot my goal was actually 217 lbs. I crushed that goal!
I've had to set a new goal. I'm going for 198 lbs. When I get there the next goal will be lower… in the back of my mind I'm thinking 175 lbs… but, I'll be happy with 185 lbs… we'll see. I'm actually going to shoot for 175 lbs.
Here's the thing about this process. I had prostate surgery in 2004. The doctors really didn't share a lot of information regarding all of the changes that were going to take place in my body. I had to research things on my own.
Over the last 10 years I've done my research. There are two "side affects" they say tend to happen to men who've had prostate surgery. They are 1) you get fat and 2) you get enlarged breasts. That's what they say typically happens to men who've had the surgery.
I've come to the realization that what they were saying was they interviewed men and these are the things that 'typically' happen. They aren't actually "side affects". What they don't stress is… these things will typically happen IF you don't change your lifestyle and eating habits. They don't even suggest that changing your eating habits would help. It just all sounds like this WILL HAPPEN to you.
I've come to the conclusion that a lifestyle change is necessary. That change includes: Minimize bread. Minimize sugar. Stop eating like a pig. Cut your portions down. Don't eat ANYTHING from a box. READ THE LABELS! Some products are just that… products. They aren't FOOD… they contain sugar, more sugar and MORE SUGAR.
I suggest you stop eating and drinking things that have sugar, too. I don't drink sweet tea anymore. Water and lemon. That's all.
One more obstacle to losing weight is believing the lie… "It's just…" That is horrible. I could say, it's just a third of a tray of brownies… with a strawberry reduction (loaded with sugar). It's just a bowl of pasta. It's just French fries. It's just a meatball. It's just Peterbrooke Chocolate. It's just a natural craving and its ok to feed that… once in a while… ok... Once a meal. It's just sweet tea. Fill in the blank with your own "it's just".
Since I've changed my eating habits I have a new problem. I'm so skinny that I don't fit my fat clothes anymore.
I like having this problem.
I'm still alive. November 16th will be my 13 year anniversary. That is 8 years longer than I expected to be alive... more like 13 years longer.
I was dinged last year for not submitting an update. I didn't like that. I just wasn't in the mood to share an update last year. So, WHACK… my story is pulled off line, basically. Thanks.
I reread my update from September 2014. I actually did make it down to 198 lbs. Then, Christmas 2015 struck. I lied to myself the entire month. I told myself that using all natural ingredients was healthy. So, I made a LOT of peanut butter cookies with a chocolate Kiss in the middle. I went back up to 208 lbs. That's still a lot better than 238 lbs when I started.
The good news is I am still at 208 lbs. I am still reading labels. Last year I found that most store bought bread has white sugar. So, I bought an Oster bread machine from Amazon and started making my own bread. Oh my goodness! I love it. I don't use white sugar. I use pineapple juice, molasses, maple syrup, local honey, coconut oil and whole wheat bread. I also make a raisin bread by adding cinnamon, raisins and crushed walnuts.
The important thing, post surgery, is to change your bad eating habits and not eat like a pig. Eliminate sugar and reduce your desire for food. When I weighed 238 lbs I had man breasts. After losing 30 lbs I lost the man breasts.
I'm not into dragon boating anymore. I loved it. It just wasn't a good fit for me.
My research has shown me that sugar is worse than fat. And, the MSM came out earlier this year and said avoid coconut oil. Sorry. I'm not believing that.
I still eat what I want. I just want a lot less because there's a lot less sugar in my diet.
This next part may get edited out but, I'll say it anyway. I started this update saying two things. First, I never expected to live this long. Second, I didn't feel like writing an update last year. Well, that's the two reasons I didn't submit anything last year. My business isn't doing well. I need money. Business has declined, and I don't have savings anymore. Why? I didn't plan on being here to begin with. If you would like to help and donate then my id on Venmo is stroke4. There. I said it. Maybe things will start to look up now. Maybe not.
Right now it's 5 to 13. 5 days to 13 years. Go figure. Who knew?
One more thing… my current PSA is 0. Technically, I stopped going to the urologist because 1) it costs money, 2) they do unnecessary tests, 3) they charge for doing unnecessary tests EVEN when I say DON'T do the tests and they don't do them, 4) if I get cancer then there's not much I can do to change that. I mean if I get cancer then there's nothing that's going to 'cure' me. And, I'm ready to die. I've been ready to die for 13 years.
Paul's e-mail address is: stroke4 AT aol.com (replace "AT" with "@")