Archive for For Partners

Mar
20

“Prostate Cancer: Men Deserve Better”

Posted by: Leah | Comments (0)

I wholeheartedly agree with the sentiments expressed in the article Prostate Cancer: Men Deserve Better, European Association of Urology, March 17, 2009 (exerpts below). http://www.alphagalileo.org/ViewItem.aspx?ItemId=56307&CultureCode=en. But talk is cheap. The question is, how do we bring about real change (change we can believe in!)? That’s a lot to ask — but heck, we are worth it. We also need a system in which newly diagnosed PC patients are seen by a multidisciplinary team of doctors, consisting perhaps of a urologist, radiation oncologist and medical oncologist. Fortunately, we have such a model now. I received this article a few weeks ago about a new, “patient-centered” unit at UCLA: “Urologic Oncology Institute Launched To Offer Multi-Disciplinary Care, Personalized Treatments To Patients” (March 04, 2009). https://mail.google.com/mail/?source=navclient#search/multi/11fdd1625aa370e2

In this case, a group of urologists (and patients) are pointing out some shortcomings of current PC management, such as a lack of communication between doctor and patient. In order to truly give consent to a treatment such as surgery or radiotherapy, I believe a patient must have been informed of the risks and benefits of all the reasonably accepted treatments available.

The burden is on the urologist to do this, because these doctors are almost always the “first stop” (and usually only stop) for newly diagnosed PC patients. There is an issue of time here, as the doctor can’t spend the whole day discussing PC with the patient, but one advocate has suggested that urologists provide patients with written materials about PC that they then could use for discussion. I think this is a good idea.

Also, the authors lament the poor quality of life that can ensue after prostate cancer treatment. But the comparison with breast cancer treatment is not a good one. Women who are treated for BC may have a better quality of life than men treated for PC for an obvious reason — their urinary and sexual functions have not been interfered with.

What we need is new treatments, applied sparingly, with fewer side effects.

Finally, I want to add a word about two neglected areas in PC treatment. We need to do more to diagnose and treat mood disorders and other psychological issues which may occur in PC patients. Second, we need to draw in a spouse or significant other (if there is one) into the discussion of PC options, and also monitor the partner’s well-being over time.
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“Prostate Cancer: Men Deserve Better”

    “Vast improvements in prostate cancer recognition, management and treatment are needed, according to major prostate cancer groups speaking at the European Association of Urology’s 24th Annual Congress today.

    “… The group’s overarching concern is a lack of clear and consistent information, particularly in areas that affect a man’s quality of life and that of his family. Prostate cancer and its treatments impact on all elements of a man’s life and not just his physical being. Many men experience urinary incontinence and impotence which can severely compromise their sense of masculinity and day-to-day quality of life, affecting their work, social activity and love life. The charter asks for practices to be put into place to better inform and educate men, their families and all those involved in prostate cancer care of the far-reaching effects of the disease and to encourage a more open, communicative and holistic approach to its treatment and management.

    “Tom Hudson, Chairman of Europa Uomo, explains, ‘Our charter highlights the shortcomings in the current management of men with this condition but from a very practical viewpoint. For example, maintaining key relationships, love life and intimacy throughout prostate cancer is incredibly important but can often be overlooked. Many men feel uncomfortable discussing these issues and avoid them altogether. It is an area which is absolutely key to men’s quality of life and there needs to be a cultural shift in the way it is approached and managed’.

    “Louis Denis, Secretary of Europa Uomo, adds “There is still much room for improvement in the management of prostate cancer and the fight against the disease is far from over. Prostate cancer does not receive anywhere near the level of interest and funding it warrants and this must be addressed. With the right holistic approach, men diagnosed with prostate cancer can live long and fulfilled lives. This approach has been taken very successfully to women with breast cancer and we believe that men deserve to be treated in the same way. At the moment, quality of life for men with prostate cancer can be very low, and steps must be taken to recognise and treat the whole person behind the disease, not just the disease itself.”

    http://www.europa-uomo.org/

    http://www.eaustockholm2009.org

Aug
20

Penile Mechanics 101

Posted by: Leah | Comments (0)

We need to talk about sex.

That’s never easy, but this is an emergency:

A professor and long-time PC patient I’ve spoken to who is familiar with research about sex and prostate cancer told me that *50% of the time* couples will incur serious damage to their marriag after the man has had treatment for PC. I have to caution you that this statistic may apply only to hormone therapy, but either way, it looks bad.

So I hope we can have a prolonged conversation about sex after PC. I’d like to discuss it from a woman’s point of view. And I’m going to start at the very beginning: How does sex work?

My new maxim is:

*Behind every successful man with PC is a woman who does the research.*

I know some guy won’t like that, but too bad. In our case, my first job after dear husband’s surgery was to figure out what caused ED. And that nearly drove me crazy.

As an urban woman who has no car, no lawnmower, sprinkler or garden hose, and no knowledge of plumbing or hydraulics, I felt lost. Because this is the way men talk about their bodies.

Scardino was my first read. He declares in “The Prostate Book”:

“The penis is a marvel of mechanical engineering.”

Too bad for me. I’m not mechanical. Nor visual. I’m a left-brainer with two left hands. Just so you know I have finished college, law school and passed the bar, but learning the mechanics of the lower half of the male body was the most difficult intellectual challenge I’d every faced

I remember sitting in Barnes & Noble for a couple of hours staring at the male genitalia in the “Atlas of the Human Body.” I couldn’t even tell whether the page was right-side up! And everybody around me thought I must be some kind of pervert.

Then there was the diagram in “The Prostate Book” of how an erection works. I looked blankly at the page for what seemed like an eternity. Then Ted came to the rescue.

Scardino explained that an erection is a sort of “valve.” Of course, I knew a valve is a pipe, but I didn’t know it’s a pipe with a stopper at one end. I had to look it up in the dictionary. That was the key to understanding the whole thing. And most embarrassing of all, DH had to explain to me the difference between a vein and an artery.

Then it got even better: Scardino wrote:

“The same hydraulic principle [as an erection] applies when you inflate a bicycle tire. To make the tire rigid, you have to force in sufficient air and then keep it contained under pressure. A leaky valve would make it impossible to maintain rigidity, and the tire would go completely flat.”

Wow. My husband had a flat tire. A leak in his penis. But something just didn’t sound right. I had read plenty about ED, but I’d never heard of a guy complaining of a leaky organ.

Then there was my favorite Scardino quote:

“Erectile nerves run along the outside of the prostate like strings along a package.”

Duh? I imagined the prostate tied with ribbons — blue, of course. But dear husband translated: “I think he just means the nerves are on the outer surface of the prostate.”

One of my favorite people in the PC community, Curtis P., never seems to have met a machine he didn’t like or understand. That’s why the guys love the way he describes things: You might call his lingo “Man-go.” “Man-go” is very technical. Not for me, but I’m learning.

But I have to say Curtis has taught me a lot, not just about auto mechanics but physiology as well. For example, Curtis wrote this about the process of getting an erection, and it sounds pretty accurate (remember, this is not medical advice):

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“Part One – The Nerve Process”

This [the erectile nerves] can be viewed as the electrical wires to run the piece of equipment. Take for example – a motor. If the wires are broke or in any way damaged to where it can’t get the signal to the motor, the motor will not run — even though the motor itself is in perfect running order.

“Part Two – The Actual Mechanical Unit Itself”

If it is working and there are no problems with it, such as leaking [in the veins, possibly as a result of damage from surgery], then erections will take place. [A little simplified. You need to get the smooth muscles of the penis to relax to allow blood to flow in, etc.]

So, this is where the different theories start at:

(1) Does one take Vitamin V (Viagra), in order to help reduce the shutdown process [give a boost to the "wires," the erectile nerves]? Or:

(2) Does one “hotwire” the unit with a shot of postaglandin [ingredient in injections for ED]?

Let’s dive into this situation even more. In the RP itself, if the nerves were NEVER disturbed, then, the patient would have the same erections post op as they did going into the surgery. So, this is the joker in the deck. One knows that when you pull on the nerves, stretching them, or have to strip the pca off of the nerve, you are going to cause damage.

The skill of the surgeon is a very big factor in this — can he remove the prostate without disturbing the nerves? Some don’t and some do. And what about the unknown factors? The size of the prostate? Where the prostate cancer is located? Is it in more in the front of the body or is it deeper inside? This has a direct impact on erectile function afterwards.

So, what’s the best method to regain erections post op?

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This is where Curtis and I parted company. He went on to recommend the VED for “penile rehab.”:

“Yes, it is all about simple hydraulics. The penis gets hard for the same reason you can use one hand to lift your car with a hydraulic jack.”

??? I don’t know how to use a jack, certainly not with one hand.

My suggestion at the time was to “hotwire” the engine, i.e., to use injections as ED therapy or rehabilitation.

Then there was the guy who wrote me comparing an erection to using a sprinkler. I think I got his point. Sort of.

Anyway, eventually I went on to do a lot of research on ED on behalf of my husband and others, and it was a slog. Difficult, but worth it.

So my next job is to learn how to use a computer.

More on sex. What exactly is sex? And do people need it, or is it just a luxury? What do women want?

Jul
27

How I Became The “Trimix Lady”

Posted by: Leah | Comments (10)

Folks, on August 13th I’ll be celebrating my first anniversary of participating in online conversation.  It also happens to be my birthday.   

When I initially posted to a bulletin board I was looking to spread the gospel of penile injections for ED, and I thought that would be the end of it. 

My husband had had an RP about 10 months before (Oct. 15, ’05), and since then we had not had “normal sex”.  We were advised to learn to “use our bodies in different ways”.  Easier said than done.   I did learn to French-kiss at forty-something, but things just weren’t the same. 

Also, your mother doesn’t teach you how to, uh . . . manually stimulate a man.  And “Ol’ Man River” must have surely known somethin,’ but he “didn’t say nothin’  (as usual).  So I had to learn by trial and error. 

I was stroking his penis in largo, e.g., slow and gentle, but I eventually learned that it only worked if I speeded up the tempo and the pressure,  do it in allegro vivace,  maybe.

Eventually we found a top-notch ED doctor who gave dear husband an injectible potion called Trimix.  Like all guys, DH was not exactly keen on shooting up *there*.  But after Dr. Melman gave him the first shot, his fears vanished.  (He says to tell all you guys that it can be done.  Don’t give up.)

Now this was SEX!!!  Better than the real thing.  Erections came in XL and above only.  I am sure for a guy who hadn’t “seen action” down there in almost a year, this was a most welcome sight.  And with Trimix *you* are in control.  Just like with the Tempur-pedic bed, *you* set the firmness.  And the pace.  You can go on forever as long as time is no object. 

Our first session with the elixir was proceeding at a leisurely pace when I happened to glance at the clock.  I noticed it was coming up on an hour.  I was getting a little tired, but being the competitive type I decided to go for a record — I held out for exactly an hour and a minute.   Then I collapsed.  Boy, did I need a drink and a Power Bar!  But that was just a “dry run.” 

I must tell you, dear readers, that if you take a breather, a “seventh-inning stretch” so to speak, you *can* even have a “double-header”.  If you so desire.

Anyway, them came August 13, my birthday, and DH got me a beautiful bouquet of flowers.  Monochromatic, pink and purple tones.  Exquisite.  I am a “flower child” in the sense that there is nothing I love more in the world than some pretty blossoms.

That same day DH went off to Vermont on a bike trip, and I became the “Trimix lady”.  I had never had an interest in online conversation, but I felt I had an almost sacred duty to tell the world about this miracle cure for ED.  So I rhapsodized a bit about it in alt.impotence and alt.support.cancer.prostate.  I thought this would be a one-time thing.  But then I got some nice notes from people in the groups (as well as some propositions), and I became hooked on prostate cancer conversation.

The biggest problem with injections for ED is that men are very put off by the prospect of “shooting up” there.  But these fears can be overcome.   After dear husband’s first shot at the doctor’s office, his fears went away.

Also, injections have been shown to play a role in “penile rehabilitation,” or restoring natural erectile function after surgery.  Other methods have *not been proven* to do this.  I have been researching and speaking out about penile rehab for almost a year, and this is something I will definitely be focusing on here.

Like everything, injections have a downside.  You have to be sure to do it on both sides of the penis.  Or you can end up with a “Leaning Tower of Penis.”

I just wrote to someone that Trimix could give an erection to a corpse who was doing his taxes:-))

Next article: Pump and Circumstance 

Jul
11

Meet Dear Husband’s Girlfriend!

Posted by: Leah | Comments (0)

A bit of black spandex with a woman attached to it.   110 lbs., maybe. Blonde curly hair,  nice face, slim, bronzed, freckled. This is Dear Husband’s (DH) new “girlfriend”.  I’ll call her “Irene”. 

Irene has attached herself to Ted, like crazy glue!  She’s a friend of a friend; that’s how we got to know her.  And she’s recently divorced, so of course she needs a shoulder to cry on. And I’ll bet you can guess who that shoulder belongs to?  Ted.

Ted is a good listener.  Yesterday, DH reported to me:  Irene said that I am so “stable and level-headed“.  Well, that phrase just makes me crow: Yes, Ted is stable and level-headed, that’s what I fell in love with, the “Midwestern” in him.  

It’s like this: DH has lived in NY for 30 years.  Even so: ”You can take the man out of Missouri, but you can’t take the Missouri out of the man.” 

You have to understand that, in frenzied New York, that Slo-Mo comes in real handy.

I do have a thing for corn-fed men, but then I like all men.  I got this “androphilia” from my mother.  She actually said to me once, “Men are a superior race”.  Well, English is not her first language, but I got the idea.  We come from an old world, religious culture, which worships men.  A little regressive, if you ask me. 

Back to Irene:  She just drops by our apt whenever she’s nearby, which is often.  And she always brings her bike.   The other day when she came she actually asked me to feel  her biceps to see how strong she is.  “You see that”, she said, “That’s how I am all over.”  Ripped, cut, defined. 

Kind of funny.  But I remember a time when I was into weight training myself, and I would want to show everyone my biceps, triceps, lats, abs, pecs, hamstrings, adductors, abductors and so forth.   

You must be asking yourself: Why do I tolerate an attractive woman spending so much time with my husband?  Aren’t I jealous?

At moments, but overall I think it’s a blessing Irene has taken such an interest in DH.  She’s good to talk to and smart.  And the truth is, with everything Ted has gone through in the past two years, he needs someone to talk to.  More than that: someone to worship him and seek out his “wise counsel”.

Of course, I have suggested to DH that he talk to me about his feelings, but he rarely obliges.  So I urged him to get to know some of the Brothers online.  But DH said he is just not ready yet.

Well, I’ll be.  Here’s the kicker!  Ted confessed to me that what he had confided to no Man, not even his brother or his father, he has shared with a Woman, Irene!  Somehow, he’s more comfortable with that.

I asked Ted what he talks to Her about, and he says Everything.  All the gory details: the impotence, injection therapy, his concerns about his genitals being ”fried”.  That’s what bothers him the most.   (Ted started IMRT 2 wks ago, salvage radiation.) 

Yes, a man can be rendered impotent twice.  DH was just starting to get a boost in his natural EF (erectile function) when all this happened.

Ted recently asked me if there has been any progress made in “nerve grafting”.  I asked, “Why”? He said, “Maybe they could use that to fix what they’ve messed with.” You know, like his Manhood”.  I told T. that nerve grafting is something that is done during prostate surgery, so it’s too late for that.

*But I reminded DH that his own ED doc, Arnold Melman, is a very smart guy, and he’s working on a gene therapy for ED that’s already in clinical trials at Mt. Sinai!  And there’s always the penile implant.  Have never heard of a dissatisfied customer! 

That was a hard conversation for me,  painful even to recall it.  So,  you could imagine how he feels.

Maybe it’s not surprising that T. would rather discuss his limp dick with a woman.  His “girlfriend”.  It’s better than saying to another guy, “I just can’t get it up.  No way, no how”.  That’s just my guess.  When you’re talking to a woman, the competitive aspect isn’t there.

We live near two parks, Riverside and Central, and in the summer there’s always something going on there.  A concert, a play.  So, about an hour ago, Irene rang us up and invited us to come to the nearby Boat Basin, saying there was a party going on there.  Well, dear husband ended up going, and that’s where he is now.  Hope he’s having fun. 

You might think I’m crazy for allowing my DH to gallivant around with a hot babe who thinks every word he says is a pearl of wisdom.

Maybe.  But I will tell you that my fear for T. was not that people would cling to him, but that they would avoid him.  Or distance themselves from him.  Sometimes that happens to people who are dealing with Round 2 of cancer (he has also had a melanoma).    An old-timer in these groups told me about this “shunning” phenomenon, and I know it happens because I’ve done it myself.

Well, the boss just walked in.  I guess he finally said, “Good night, Irene”.

Take care.