Tuesday, February 12, 2019

Jane Brody, New York Times Health Columnist, Speaks about Penis Health with Don Cummings

Sometimes it takes the licensing and advertising of a treatment to get patients to seek help, even for a medical problem that is often painful and psychologically devastating. 

Such is the case with Peyronie’s disease, a scarring and bending or curving of the penis that can make sexual intercourse difficult or impossible for both straight and gay men. It most often afflicts middle‐aged men, usually the result of an injury that may not have been noticed. Injury can occur during a sports activity, accident or vigorous sex when the erect penis is bent or pounded against bone. 

In repairing the damage, the body creates plaques of scar tissue under the skin of the penis, causing it to bend or curve abnormally or become indented when erect. Before the end of 2014, when the Food and Drug Administration approved an injectable drug called Xiaflex, there was no approved treatment for Peyronie’s. Xiaflex contains an enzyme, collagenase, that in four cycles of treatment is injected directly into the plaque to destroy it and reduce the curvature. 

One off‐label remedy — multiple injections into the penile plaque of the blood pressure drug verapamil — is said to work in up to 40 percent of cases, though this has not been proved in a controlled trial.

One happy beneficiary of verapamil, Don Cummings, a 56‐year‐old playwright living in Los Angeles, has written a memoir about his experience, “Bent But Not Broken,” in hopes of encouraging other men similarly afflicted to seek professional help, especially now that Xiaflex is available. 

“I know that men don’t talk about this, and I wanted other guys to know they can get better,” Mr. Cummings said when I asked why he wrote such a revealing book. “I’m back to 95 percent of what was normal for me before Peyronie’s.” 

Researchers estimate that anywhere from 1 percent to 23 percent of men between the ages of 40 and 70 are affected, although the actual number may be higher given that embarrassment keeps many men from seeking medical help. More than three‐fourths of those affected are depressed and stressed by the problem. 

“For the most part, men suffer in silence,” Dr. Jesse N. Mills, director of the Men’s Clinic at the University of California, Los Angeles, said in an interview. Given his urological specialty, Dr. Mills said he sees about 20 new patients a week with Peyronie’s, many of whom seek help after seeing ads for Xiaflex online. 

“I don’t think the incidence has changed in the last 500 years, but more men are realizing there may be an effective treatment, though we still lack a celebrity patient who will do for Peyronie’s what Bob Dole did for erectile dysfunction,” the urologist said. 

The penis consists of three tubes: the hollow urethra that carries urine and semen, and two soft, spongy tubes called the corpora cavernosa that fill with blood to stiffen the penis in an erection. All three are encased in a tough, fibrous sheath called the tunica albuginea that, when plaque forms, makes the sheath less flexible. Depending on the location of the plaque (in 70 percent of cases, it forms on the top side of the penis), it can cause the penis to bend up, down or to the side when it stiffens. Sometimes plaque forms around the penis, creating a narrow band like the neck of a bottle. 

Heredity and certain connective tissue disorders like Dupuytren’s contractures increase the risk of developing Peyronie’s. Elevated blood sugar, smoking and pelvic trauma also increase the risk. The disease can develop gradually or come on suddenly. It occurs in two phases: acute and chronic. The acute phase, which often causes painful erections, lasts for six to 18 months, during which plaque forms and deformity of the erect penis worsens. In the chronic phase, the pain ends, the plaque stops growing and the deformity stabilizes. 

Mr. Cummings’s doctor told him it was good that he came for treatment early, before the plaque became calcified and harder to treat. As he described it, the many injections of verapamil put holes in the plaque, “changing it from Cheddar to Swiss” and making the penis more flexible. He also spent hours a day stretching his penis with a traction device called Andropenis, an F.D.A.‐ approved penile extender. 

This and similar devices can help lengthen a penis shortened by Peyronie’s and foster straighter remodeling as the plaque is replaced with healthy collagen. 

“Xiaflex is not a miracle drug,” Dr. Mills said. “The trial that led to F.D.A. approval saw a 35 percent improvement in curvature, although we’re seeing about a 50 percent decrease. I tell patients ‘You’re never going to get back the penis you had, but you can get a functional penis,’ which is what most men want.” Only rarely does the problem correct itself without treatment. 

Severe cases that don’t respond adequately to injections may be treated surgically, an option usually reserved for men with disabling deformities that make sexual activity difficult. Surgery is not done until the plaque and curvature have stabilized. Options include shortening the side of the penis opposite the curve or extending the curved side by filling in with a graft, a more challenging approach. 

Some men with Peyronie’s disease who also have erectile dysfunction may be fitted with an inflatable pump or malleable silicone rods that straighten the penis and make it stiff enough for penetration. 

As with all sexual problems, it helps tremendously to have an understanding and patient partner. Mr. Cummings said he was fortunate to have been in a loving 16‐year relationship with his boyfriend, Adam, when Peyronie’s surfaced. Though the sailing wasn’t always smooth, he and Adam married as he neared the end of treatment. 

Mr. Cummings said several women have told him that their husbands have the problem but won’t do anything about it. “Some doctors tell guys that there’s nothing that can be done about this. Men should know there is help out there — this is not something to be ashamed of,” he said. 

Dr. Mills emphasized that although there is still no sure cure for Peyronie’s disease, therapy often lessens the problem. “Xiaflex is the best treatment we have, and it got only a B rating from the American Urological Association,” he said. 

Although insurance coverage has long been hard to come by, most health insurers, including Medicare, now cover Xiaflex treatment for men with curvatures greater than 30 degrees. If your insurer denies coverage for Peyronie’s treatment, especially if the disease impairs sexual function, ask your doctor to file an appeal. 

Jane Brody is the Personal Health columnist, a position she has held since 1976. She has written more than a dozen books including the best sellers “Jane Brody’s Nutrition Book” and “Jane Brody’s Good Food Book.” 
A version of this article appears in print on Feb. 11, 2019, on Page D5 of the New York edition with the headline: A New Treatment for Penis Curvature 

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Thursday, February 07, 2019

I Am Not a Hoarder, And This Is My Baby Shoe

This may sound like a boast, and maybe it is, but I am very organized. I always have been. It's fine. I have always enjoyed label makers and when I occasionally look at the one large gray-silver plastic tub of memorabilia in the garage with its yearbooks, diplomas, death certificates of favorite grandmas, and expired driver's licenses, all organized in folders, in rows, by type, for ease of access, and I quiver with dopamine, serotonin, oxytocin, endorphins and a possible mid-week orgasm, I have to remind my OCD self of my one cardinal rule about life management: "Do not organize the already organized."

And being an over-achiever, I succeed. Kind of.

What's next for a filing lunatic like me who has kept a one page diary entry of my daily drudgery and thrills every single day since February 16, 1973 (except for annus 1976 because I was feeling too cool)? When all the physical world is in order? Easy. I just go digital.

It's all getting digitized. Bit by bit. Going slowly. Since last year when I purchased a Plustek Photo Scanner for zippy pasta-machine type feeding of photos and docs and a Kobratech cell phone tripod  for my iphone that I wrap around a horizontal mic-boom over my desk for large or quirky items to be photographed, well...you get the idea...I plowed through two shoeboxes so far from the 1960s and 1970s, a large box of crazy large format photos including those of my grandparents' wedding from 1938, and a box of my hair from my first haircut and, well, my baby shoe from my baptism, featured above.

I would love to say that when I look at this shoe I get some sort of warm feeling other than the joy of knowing that I still have it and that I can so easily take a nice picture of it and save it, but truly, I don't feel too much. I don't remember wearing it. I do remember that my little cousin Terry was dressed in some baptism outfit that I believe was borrowed from me. Or maybe from my sister. Or it was just the shared-family-baptism outfit. If I feel anything about little baptism shoes it would be this and it's not a feeling, it's just a memory: My cousin Terry's baptism was the first one I remember going to. I think I only went to a couple more, my nephew’s and my second cousin’s, many years later. I was the Godfather for both babies. But my family wasn’t really big into being Catholic. My parents were pretty much atheists and we were the family who gladly provided the secret recovery-basement to provide local girls a few hours of respite after their abortions.

I sometimes wonder, had I been aborted, if it would have mattered. Of course, the world would be a little less organized had I not been gestated and raised to put things into their categories. I guess I am very happy to be alive. But had I not made it out of the womb, well hell, someone else kind of like me would have picked up the slack.

This shoe, I photographed it today. I actually wish I had a strong feeling about it. But frankly, even though I am on the hunt here for some warmth or a cooing love for this shoe, I just feel a bit distant from it. Babies never seemed quite real to me. By the time I knew what a baby was, I was already not a baby and I had no memory of ever being one. I couldn't relate. I still don't. Not really. Babies are about as interesting as little bald, pink gerbils to me. These strange biological blobs waiting to take form.

My brother and I had Habitrails when we were in Junior High. They were in the basement. We each had a couple of gerbils in them. We did not know their sexes. One of my brother's gerbils gave birth to about eight little gerblits. My mother smartly warned my brother, "You better just let her nurse the babies and take out that other gerbil in there. I'm afraid he or she will eat the babies."

My brother followed her wise instructions. He put the other gerbil roommate into another cage, temporarily, to allow Momma Gerbil to raise her young. Everything was going well until the day he came home to find one of the babies was missing. Strange. The next day, another one. Then, there was blood kind of everywhere in the Habitrail. Momma gerbil had made quite a large meal of most of her babies. So my brother did the only thing he thought was right. He picked up the mother by the tail in a rage and he beat her to death with his fists. The few baby gerbils that remained, they grew up. They were cute and very energetic.

I don't believe mothers should eat their young. And if they do, it's probably best to make sure the behavior is stopped.

But back to this shoe. I'm still curious about it. It's kind of cute. It is hard to imagine any foot fitting in there. Especially my current size ten with the the lumpy fronts. Babies are so helpless. I was once helpless. My mother did not eat me. She cared for me. And she fed me. My earliest memories of her was her tying my shoes in the morning. Not this shoe, but bigger ones. And my brother's. And when she washed my hair real hard in the kitchen sink, like I was a cabbage, and it felt good.

We all were very helpless. So I guess this shoe makes me think/feel this: there is no way with a foot that small that you could do anything on your own. You need help. Even with the simple task of washing your hair.

I understand this, right? I try to be helpful to others. I'm not always good at it. Sometimes it makes me cranky. Sometimes I feel like it's fun. I think, really, I probably only recoil from aiding others because I am afraid of wasting time when I could be using that same time to organize things or to bang through a To-Do list. Which is nuts.

There is a saying, and I probably have it all wrong, and I am going to attribute it to Carl Sandburg, which could also be wrong: "The dead hold in their clenched fists only that which they have managed to give away."

Please let me know if you have the correct words and attribution for this saying. I have been googling for weeks trying to find it. People are trying to organize Google better. But the algorithm is very far from how I organize the shelves in my garage. Similar in that like goes with like. But overwhelming. And strangely, lacking labels that give you the date. But it is very similar to how our minds work. The associations. The tangents. The click-throughs.

"I got shoes, you got shoes, all God's children got shoes. When I get to heaven, gonna put on my shoes, gonna walk all over God's heaven, heaven, heaven--"

I loved being in the chorus when I was in grade school. I didn't care what we sang about. I just liked how it all sounded. I just wanted to feel good. In or out of my shoes.


Bent But Not Broken, Heliotrope Books

Tuesday, February 05, 2019

Advance Praise for Bent But Not Broken

Thursday, January 24, 2019

We Have Got to Get it Together?: 14 years in the Making

Everything old is new again. But my opinion has changed.

I did not mention this as part of my blog post from April 29, 2005, but I remember I got into a little domestic spat with my husband, then boyfriend, and I took a walk, late at night. I don't remember what the fight was about. Probably something silly like, "You don't pay enough attention to me," or "Why won't you ever close the kitchen cabinets after you open one up?"

So there I was in the early years of blogging, running away from home with some anger, with my senses wide awake, my thoughts pounding through scenarios. I went for a brisk walk and landed at a coffee shop when a great old song, Something in the Air, came on, the main refrain being, We have got to get it together. To calm myself and to just get the hell on with life, I wrote an entry about how the Right and the Left have to get it together. Maybe the domestic squabble, needing psychological tending, was weighing on me and I had the simple need to get two opposing sides to come together. That, and also, our national schism weighed on me heavily in those days. (Still does, obviously.) But I was optimistic. I really felt like we, as a nation, with all our differences, could lean on each other, accept each other, work together, open up, get it together, and make a shiny future.
Here's the post:  April 29, 2005 Blog Post

Not much has changed in our country since 2005. Except, actually, our schism has grown worse. Meaner. Uglier. At a tipping point.

So this is what I think today: We are never going to get it together. The Right and the Left are even more divided now than we were in 2005. I think Russia got what it wanted: to split us apart permanently. I think the Right is getting what it wants: a lunatic leader frothing at the mouth. The Left? We got AOC. We'll see what she pulls off over time.

I no longer believe in our country as a viable nation. The Cold Civil War has been going on since Johnson. With each new president it has only gotten worse. So let's divide. Or at least, let's make the federal government weak and let each state government get much stronger. But with that, let's also flip the tax bill. I pay 25% to the feds for a few programs and the military and I pay 75% of my taxes to California for clean energy, education and healthcare. The inhabitants of Red places, like Alabama, can also send their 25% to the IRS, and use the other 75% to do whatever the hell they want to do. I can't care about them any longer and I know I cannot change anyone's mind about anything. I can't stand how they think and I know they can't stand how I think. So...a nice loose divorce into strong state independence with nothing but the military to hold us together seems about all we can handle. An extended family of convenience.

We will never get it together. It isn't possible. Sigh. So let's reconfigure the system. Maybe Trump's destruction is what was needed. Maybe Trump really isn't the disease, just the symptom. We got what a compromised, federal system deserves. Now let it fall apart. As painlessly as possible, please. Tax me like you mean it, Sacramento, and let's make the utopia we know we can forge with all our creativity, wealth, inclusiveness and science. And please, let's clean up the Central Valley. No one needs to look at those sad, dying cows along the I-5.

Monday, January 21, 2019

Bent But Not Broken: Sign Up and Launch

Hello Friends,

Bent But Not Broken releases March 15, 2019 with launch parties in Los Angeles on March 15, and in New York on April 16. (With more events to follow.)

Thank you for all your help and support. Writing a book and getting it out there is not at all a lonely pursuit. So many talented friends and family come to the fore. I am so grateful.

If you have not received a newsletter about the launch of Bent But Not Broken in the last week, that may mean you are not on the mailing list. If you would like, please Subscribe Here.

Also, you may RSVP on the website. Scroll down to "Events."

If the urge overtakes you to share my website about Bent But Not Broken with others on any and all platforms, please feel free to do so.



--Yours, please,
Don Cummings

Thursday, January 17, 2019

My First Blog Entry, But Not Really

Hello Friends.

I began blogging a year after Facebook was born and a year before Twitter hatched. I was very committed to it. Not many people that I knew were blogging. In fact, I felt sort of bashful jumping into the fray, being so public with, well, anything at all. Quaint, right?

I blogged approximately four times each week. It was good practice. I had already worked on a book and many personal essays and plays. Blogging was a great way to get some words out there while I waited for other things to solidify. It was great practice. It gave my life rhythm.

Blogging was quite popular, remember? A few years slid by and Facebook took over. Then Twitter flew in. Blogs were eclipsed. But I kept blogging because I have a hard time stopping things. I also did not want to adjust my focus from something that felt quite natural to things that appeared so bizarre and annoying. I barely understood why anyone would want to have friends online as opposed to in-real-life and my brain turned into soup when I tried to figure out what to do with an @ or a #.  No matter how many times people explained them to me, I just got confused. I kept blogging. It felt much closer to how life is really lived. I went at it pretty hard for about ten years. I tapered off, though it felt like I was abandoning something I had started and I felt guilty and strange. Like how you feel when you were young when you stopped rotating all your stuffed animals on your bed. But my gut told me that blogging had become yesterday's mashed potatoes. There was such a wave of cat vids and pokes and two different choices of news feeds and walls and mayhem, and people just going sort of crazy for snippets, that if you blogged, you sort of looked like you were trying to join the digital conversation with a buggy whip. I joined the others, blogged less, and headed into the future toward an American election controlled by Russians and racists.

But long before all this ramped up Gutenberg-on-crack--there were diaries, journals, scraps of paper thrown into a shoebox, that felt much more important than blogging, even.

On February 16, 1973, my mother was cleaning out the dining room server. As I walked by, she pulled out a desk planner diary for that year. My father's overlord was General Motors, and the company sent him some kind of executive desk planner each year, until they stopped. My father never used it. It came in its own box. It was a grayish powder blue. In those days, anything that was kind of new and nice, well, it seemed a shame to throw it away. So, I'm walking by, going where, I don't remember, and my mother, with serving bowls and table cloths on the floor, a can of Pledge, a rag, and the desk planner in her hand, asked me, "Do you want this?"

"What is it?"

She told me what it was. I said, "Sure."

She said, "Don't take it unless you're going to use it."

I took it. I put a rectangular smile-yellow sticker on it with my name in the middle and a thin black border around the edge. The font was thick and 70s funky. This sticker came from a collection of stickers that were printed in many shapes and sizes that all said my name. You could find your packet of stickers in a twirling rack, arranged alphabetically, at Expressions or Spencer Gifts at The Nanuet Mall. I added an 's to my name on the sticker and wrote the word Book beneath it. Titled and ready, thus began my one-page-per-day diary/journal entry habit that I have maintained every day since. It's sort of OCD. But then again, it was born from an OCD tendency (my mother's cleaning) and my OCD tendency (no reason to stop any habit). 

I skipped 1976. I think I was going through a too-cool-to-do-it phase. But I missed it, so I picked it back up again in 1977. So I am in my 46th year. Perhaps this is what made me a writer: the need to keep things clean, recorded and remembered. Then, because that may not be too interesting to others, I figured I could make something out of these honest recordings, or really any unvarnished truths from life that I remembered that were or were not written down. Then, to make it fun, you add some personality to it. Keep in mind that almost every story is a fight between love and fear. Fight for some sort of clarity and justice, humor and connection. Pick a format--play, book, film, poem, song--And just keep going.

Don't stop. 

This might be a little nuts, writing it all down, every day, not missing even one twenty-four hour period. But besides 1976 (which I summed up at the beginning of my 1977 journal) I have never missed a day. I have all my stories. When I was a kid, I called it My Book. Sometimes, I still call it My Book.  Nothing seems to change. Other times, I do call it my journal or my diary, more often, my diary. I had no idea I would become a writer. I thought I would own an aquarium store or, in my real big fantasies, become a pop star.

If you think we did something together on some date since February 16, 1973, just ask me. I can look it up.

January 17, 2019