Month 25 - Sleeping through the night

Not long ago, I was comparing notes with a fellow radical prostatectomy patient, and the discussion led to sleeping through the night.

This particular gentleman said that, while he had nearly 100% control over incontinence, the one thing that plagued him was the need to run to the bathroom multiple times through the night.  Obviously, that makes for a very fitful sleep pattern.

My own experience has been much better.  In the first few months after my surgery, I was running to the bathroom 2-4 times through the night.  I suspect, though, that was me being overly cautious, not wanting to have an accident in the bed.  I would also curtail my fluid intake after dinner with the thought that, if there's nothing in me, there's nothing that will have to come out.

Today, I can pretty much sleep through the entire night without a problem, even with late night fluid intake (I gave up on the nothing-to-drink-after-dinner notion long ago).  Still, there's probably one night every six weeks or so where I find myself making two or three trips for whatever reason.  But it's happened the last few nights, but I suspect that may be something related to recovering from my first overseas trip since the surgery.

I just came back from a trip to Germany and Austria to check out the Christmas markets and to visit family and a friend.  I think my body clock is still somewhere between Vienna and here, and that's why I've had to run to the bathroom in the middle of the night.  Pure speculation.

The flights over and back went just fine.  No problems with being cooped up for 9 hours or so, at least as far as bladder control was concerned.  I did pack a couple of pads for insurance, but all they did was take up a little suitcase space.  They weren't needed at all.

Special Update - PSA Undetectable

Another round of good news: My PSA results were undetectable at the 21-month mark, so I remain cancer-free. 

The next go around will be in May 2013--back to a six month monitoring schedule.

Two Years

It was two years ago today that the word "cancer" officially became part of my personal vocabulary.

It certainly was an emotional day, and the ensuing treatment option research and selection was one of the largest emotional roller coaster rides I've been on.  Still, the surgery has been a success in eradicating the cancer, but not without some costs.

I don't think there's a day that's gone by where I haven't thought about having had cancer, but it's not always in a bad way.  In other words, I don't dwell on it.  Instead, my thoughts around cancer are focused more on increasng awareness and sharing my experience.  Yes, there are practical thoughts about stress incontinence and sexual function, but those are minor and part of every day life now.

The other thing that I really don't give much thought to at all is the chance of recurrence.  Yes, it's a little cloud that follows me around, but I certainly don't lose sleep thinking about the possibility.  I'd much rather focus on doing the fun things in life now, on the off chance that the cancer does return later.

None of us would have chosen this path for ourselves.  But we can choose to educate ourselves after the initial diagnosis; evaluate all of our treatment options and select the one that best fits our own personal situation; understand and accept the risks; and then live with the outcome knowing that we made the best possible decision with the information we had at the time, and with the support of our families and friends. 

The operative word, of course, being "live."

*     *     *

 

Wow.  Hard to believe, too, that this little ol' blog that I started initially to keep friends and family informed, has had over 7,000 views in those two years.  Mind-boggling.

 

That said, however, the reason I kept the blog going was to share my experience with others diagnosed with prostate cancer, so I guess I've succeeded with that.

 

*     *     *

 

I go for my next PSA screening this week, with the results given to me early next week.  Keep your fingers crossed.

 



Month 23 - Itching Revisited

It was two years ago that I went in for my physical and my doctor felt a mass on my prostate during a DRE and kicked off this journey.  Hard to believe.

 

*     *     *

 

As I've gained more experience blogging, I've noticed that the two most common sources of traffic for this blog are Google searches on:

 

1. "Bend over and spread your cheeks."  (I won't even begin to wonder why people Google that...)

 

2. "Prostate cancer and itching."

 

 

BIOLOGY AHEAD



 

Looking back at my post on Day 70, I talked about the topic, but only superficially, so I want to revisit it and provide more details about what I was experiencing.

 

As a refresher, I had my radical prostatectomy on 4 January 2011.  Through mid-June of 2011, I experienced a pretty constant itching sensation in my urethra that varied in intensity.  Early on, it was pretty strong and nearly constant. As time progressed, the intensity would wane and there were periods where I would be itch-free.

 

The thing that bothered me wasn't so much that the itching was completely driving me nuts, it was that it made me feel as though I had to urinate nearly all the time, even though I really didn't have to go.  That made me run to the bathroom much more frequently than I needed to.  And when I did urinate, the itching sensation often returned shortly after.

 

There were no signs of any urinary tract infection at my PSA screening in late February and, I'll have to admit, being a stubborn/foolish guy, I really didn't pursue the issue with my urologist.  I just endured it, thinking it was part of the package deal.  I don't recommend that approach.

 

In June 2011, it was pretty interesting in that the itching sensation pretty much stopped suddenly, as though a light switch had been thrown.  That pleased me to no end.

 

So now, 21 months after my surgery, I'm 98.7% itch-free.  The only time that I get an itching sensation in my urethra is after a stress incontinence event.  (By the way, my stress incontinece has improved significantly as well.)  If I have a substantial sneeze or cough, I can sense that a little urine will make its way into my urethra, but not all the way out the end of my penis.  When that happens, I itch until I urinate and clear the urethra.

 

So I hope that provides some better and more meaningful insight into my experience with prostate cancer and itching.

 

*     *     *

 

Okay...  So a little editorial venting here...

 

October is Breast Cancer Awareness month and, if you watched any NFL football games this weekend, you saw many players and coaches decked out in pink Nike shoes, pink wrist bands, pink towels, and pink ribbons.

 

Don't get me wrong.  Breast cancer is a horrible disease and every effort should be made to eradicate it.

 

Yet the NFL didn't do squat for Prostate Cancer Awareness Month last month.  Zip.  Zilch.  Nada.  Nary a blue ribbon to be found let alone blue shoes, wrist bands, or towels.

 

Considering that about 10 men on each team will be affected by prostate cancer, it's pretty sad that they don't acknowledge it even exists.  Imagine how many men they can reach with a message of awareness over the course of four Sundays in September?

 

Guys need to get much better at increasing prostate cancer awareness (the main reason I've kept this blog going) and do much better at marketing the issue and cause.

 

Alright.  I'll step down off my soap box now...

 



Month 22 - Status Quo

Aside from this being Prostate Cancer Awareness Month, there really isn't much that's changed since last month's post.

Things continue to go well on pretty much every front with the exception of the sexual function.  That's still only running at the 50% - 60% level and I think it's time that I retry the Cialis again.  (Readers of this blog may recall that I had problems with my vision shortly after starting it after the catheter was removed, so I stopped taking it.  I thought eyesite was more important than an erection.)

I did find that there's a local prostate cancer support group in my area that I may get involved with, mainly to share my experience with guys who are newly diagnosed.  I'll have to do some research on it...

So that's about it.  A short post this month.

September is Prostate Cancer Awareness Month

All of the recent and confusing headlines about prostate cancer may cause guys to just abandon the idea of getting screened altogether. Don't ignore it! Burying your head in the sand would be a mistake.

Now, more than ever, it's important to educate yourself about prostate cancer, the associated research, and its treatment options. Remember that one in six men are diagnosed with this disease each year, so knowledge is power should you happen to be that one in six.

My cancer was discovered during a routine physical with a digital rectal exam (DRE). My physician felt a mass, ordered the PSA, and that led to a biopsy and confirmation of cancer. Thirty seconds of discomfort led me to ultimately being cancer-free. So I have to ask:

Have you had your prostate poked lately??

 

If not, schedule an appointment with your doctor. Now.

 

Month 21 - Undetectable PSA & Surgery Study

My PSA was undetectable (<0.01) at the 18 month mark--still cancer-free!

I'll have to admit that I'm getting better at being less emotional about these PSA tests.  Again, whatever the results are, there's nothing I can do to control them, I can only control my reaction to them. 

*    *     *

On 19 July 2012, the New England Journal of Medicine published another study that yet again increases the confusion about the treatment of prostate cancer:

Radical Prostatectomy versus Observation for Localized Prostate Cancer

The study followed 731 men over 10 years (mean age: 67; median PSA: 7.8) in two groups: one that had a radical prostatectomy and the other that went through observation.

Over the course of the 10 years, 47% of the men with prostatectomies died and 49.9% of the men just being observed died.  That was statistically insignificant.  Of the men who had had prostatectomies, 5.8% died from prostate cancer or its treatment, while 8.4% of the men in the observation group died from prostate cancer.  Again, not a significant difference in outcomes.

In a related article in the San Francisco Chronicle, Otis Brawley, chief medical officer for the American Cancer Society said, "There is no question in my mind that what we have been doing in the United States for the last 20 years has hurt a lot of men needlessly."

SF Chronicle: Prostate Surgery Fails to Save Lives

So what are us poor schmucks diagnosed with prostate cancer supposed to do?

I'm an analytical kind of guy, and I have to admit that these statistics--while cold, hard, unemotional numbers--are beginning to make me wonder if having had the surgery--with all of its lasting side effects--was the right course of action.

Then the emotional side of me kicks in and the peace of mind knowing that my PSA is still undetectable at 18 months makes me say, yes, I made the right choice. 

Would I have made a different choice had this information been available when I was first diagnosed nearly two years ago?  I don't know.  Really.  Besides, there's nothing I can do to change it now.

We can only make the best decision we can with the information available to us at that point in time.

Until there's a test that can accurately determine whether a guy has the "lazy" prostate cancer that he can live with or the really aggressive prostate cancer that will likely kill him, this will be an ongoing debate, source of confusion, and perhaps unnecessary treatment.   

So if you're recently diagnosed and wondering what to do next, all I can say is research, research, research, and make a decision that fits your own needs and comfort level.

Month 20 - Hiccup

So things have been pretty normal for the most part since the last update.  Except for one little hiccup.

About 10 days ago I was washing dishes after dinner and the sound of the running water got the better of me and my bladder.  I had this sudden urge to urinate (I probably hadn't been to the bathroom in 3+ hours, so I knew that my bladder was getting full.)  I made a mad dash for the bathroom and along the way, enough urine leaked out that I had to change my pants and underwear after emptying my bladder in the bathroom.  Not fun and not expected.  Thankfully, I was at home instead of standing next to some water feature in a crowded mall.

Not sure what was up with that, but it wasn't something to lose sleep over because 98% of the time, I'm dry--even now when I sneeze or cough.

*     *     *

Next month I have my 18 month follow-up (mid month), so we'll keep our fingers crossed that the PSA remains undetectable. 

*     *     *

If you've been a close follower of this blog, you may have noticed that I put a new page out there called "Life After Radical Prostatectomy - 18 Months Later."  I just thought it was appropriate to share where I'm at in the whole recovery process.

Month 19 - Support

It's not something that you see everyday, but it's something that made me smile when I did.

In a world of pink breast cancer awareness ribbons and Susan G. Komen Foundation ads, it's refreshing to finally see a glimmer of light blue.

I was recently in a Vons supermarket (part of Safeway) and they are promoting prostate cancer awareness for the entire month of June.  The store had blue ribbons hanging over the cash registers; blue reusable grocery bags for sale (for $2.99 but $2.00 from each bag goes to the Prostate Cancer Foundation); a cash donation box; and a prompt on the credit/debit card swipe terminal asking if you would like to contribute to the Prostate Cancer Foundation.

Apparently the Safeway Foundation has been doing this since 2001 and has raised over $68 million for prostate cancer research.  To be fair, they've also done this for breast cancer research and have raised over $108 million in the same period.

It's both refreshing and encouraging to see a business take such a proactive and highly visible interest in combatting prostate cancer.  You can read more about the Safeway Foundation here:

The Safeway Foundation

Prostate Cancer Foundation - Vons/Safeway Support


While I'm not in the business of endorsing commercial enterprises, I will tell you that, if given the choice between a Vons or Safeway and a Kroger, Ralph's or Piggly-Wiggly, I'd be inclined to support the Safeway chains.

*     *     *

That whole discussion makes me think of how I can increase and awareness and provide support. 

The American Cancer Society's Relay for Life might be one way, but that's rather broad in focus, and I think that there should be a more acute focus on prostate cancer awareness.  This is particularly true in light of the recent United States Preventative Services Task Force recommendation to do away with routine PSA screening.

PSA Screening Recommendation Story

While I can see points on both sides of the argument, the recommendation only served to further confuse an already extremely confusing situation for men.  My fear is that it will cause men to just ignore the subject altogether out of pure frustration.

To say that the PSA test is harmful is misleading.  It's what you do with the results of the PSA test that can lead to "harm."  And "harm" is defined by each individual's perspective, not a bunch of statistics or a task force.

What needs to happen is that awareness needs to be increased and men need to be thoroughly educated about prostate cancer and its different forms and complexities; about the treatment options available; and to have very blunt and real conversations with their urologists about the risks, side effects, and benefits of each option.

*     *     *

Finally, the blog reader that I mentioned last month made it through his radical prostatectomy just fine and is recovering with some days better than others, as expected.

Month 18 - Pleasant Surprise

In last month's posting, I talked about the new normal for me as it related to my stress incontinence. Not long after posting that, there was a noticeable improvement that seemed to happen almost overnight.

Last month, if I sneezed or coughed, there was almost certainly going to be a leak after either. But about 2 weeks ago, if I sneezed or coughed there was very little leaking, if anything. That's been a pleasant surprise.

If I sense a sneeze or cough coming on, I will try to tighten my pelvic floor muscles in advance, and that helps, I'm sure. But there are still times where I'll spring a leak, but when I do, the volume seems to be smaller now. So I consider this to be progress (I always was a late bloomer!).

Sexual function is still an issue, although it, too, is slowly improving without the aid of Cialis. Considering that I have only one nerve bundle remaining, that's a very positive sign. I'll continue to be patient and at some point may try the Cialis again.

Finally, best wishes to a reader of this blog as he undergoes his radical prostatectomy today.

Month 17 - The New Normal

Well, not much has happened in the last month or so.  With an earlier spring than usual, I've been quite busy around the house, and all of that activity sent me back to wearing pads for a while.  If I know that I'm going to be doing a lot of lifting, bending, or squatting, I just resign myself to the fact that I'm going to spring a leak or two, so the pads go back in the underwear.  Not the ideal situation, but it beats the alternative.

As far as sexual function is concerned, there's been some slight improvement (or perhaps wishful thinking on my part), but still have a long way to go.  I've thought of trying the Cialis again to see what happens, but that gets a bit pricey--about $140 a month.

So that's about it for this update.

Month 16 - Nothing to Report

Okay, so I'm a day late posting this.  Sundays are supposed to be days of rest, right?  (That's my excuse and I'm sticking to it.)

It's been a good month except for a little head cold that brought enough sneezing and coughing that sent me back to wearing pads for a couple of days just because of the equal and opposite reaction down below.

I think that I had a light bulb moment during the cold: This is my new reality, and I shouldn't be frustrated by having to wear pads on occasion.  (In last month's post, I was still fighting the idea of having to do that.  This month, I've come to terms with it.)

I continue to try and educate when an opportunity presents itself without being overtly aggressive about it.  If awareness is enough to cause another man to get checked out, then it's worth it. 

So that's about it for now.  The warm weather got me cleaning out the garage this weekend... It was more fun than one would think...

Month 15 - Spring Cleaning

Okay, so it's mid-February and I've gotten an early jump on some serious spring cleaning.  But being so active has highlighted the fact that the stress incontinence persists. 

Bending, twisting, lifting, stooping, climbing, all can bring a little "surprise."  And, as usual, some days seem to be better than others.  If I'm going to be really active for an extended period, I find that I will revert to using the pads again.  Not something that I'm thrilled about, but a necessity.

When I was at the surgeon's last month, we talked about this and he said that at a year out, there's not going to be much more improvement.  In other words, this may be as good as it gets.

Disappointing?  Certainly.  Of course, I'd love to be 100% dry, but I guess that just isn't in the cards.  So I'll adapt and learn to live with what I have.  And, again, it's more of a nuisance than anything and something that I can tolerate given the alternative.

Special Post

"PSA undetectable."  Music to my ears!!

That was the result of my one-year post surgery PSA test, letting me know that I remain cancer-free.  Needless to say that made my day.

This time I didn't get nearly as worked up emotionally waiting for the result.  That doesn't mean that I didn't think about it all week long; I simply didn't wig out like I did for the six month test back in August.  I guess experience is a good teacher.  Besides, the results will be what they are, and there's not a thing that I can do to change them.  I can only learn how to adapt to them.

So for all your continued thoughts and prayers, thanks!  They've been working.

Month 14 - New Year!

Happy New Year!  Hopefully, this year will be a bit better than last.

The holidays were generally good for me with the exception of catching a stomach bug that was going around.  Let's just say that stress incontinence was the least of my worries for about 30 hours beginning at 6:00 AM on Monday, 26 December.  At least mine waited to kick in.  My sister and brother-in-law suffered through it beginning Christmas Eve, and my nephew's step son fell victim to the bug on Christmas day.

Later this week I get my blood drawn for my one-year PSA test.  I'll get the results on 19 January, so keep your fingers crossed.  I hope that I won't get as worked up about this round of tests as I did for the six month test back in August.  I'm sure that I will for a little while.  I mean, really, if the PSA comes back showing something, then that means the cancer is elsewhere--bones or organs--and that will be much more problematic to treat.

I'm beginning to think that I'm about as good as I'm going to get when it comes to the stress incontinence.  I just haven't noticed any real improvements since the last posting or two.  I'll talk to the surgeon about it when I get my results. 

It's not that it's all that bad...  But it's enough of a nuisance to frustrate me.  Somedays are nearly perfectly dry; and then there's the off day where a pad might have been needed.  Unfortunately, I can't predict how the day will go.  It just happens.

So that's about it.  Look for a special post next week with the PSA results.