Everyone's story is different. We are pleased to share Wendy's and Bill's story of love and sexual intimacy and hope that it will be useful to you. The Maine Coalition would also love to hear from you.
I became a prostate cancer widow on April 1, 2007, at the age of forty-two after my husband fought a ten and a half year battle nonstop battle with prostate and died at the age of fifty-six and a half. His death left three sons 18, 19 and 22 fatherless. The end of his life was very difficult as he lost his vision to strokes seven months before he died. He also suffered seizures from stroke scar tissue and lost hearing from a tumor in his jaw.
I think in the sexual grieving and the sexual rediscovery process, a couple must NEVER lose sight of the fact that even though there are sexual losses and changes after a prostate cancer diagnosis, it is a small price to pay compared to losing your life to this horrid disease. Read more about Wendy...
Sexual intercourse and sexual intimacy is a sacred part of any relationship. It is a beautiful expression of love to exchange sexual pleasure with the person that you have committed your life to. One should never feel guilty or ashamed because they desire to restore that ability.
It is natural and normal to want to be able to be able resume the sexual experience after the prostate cancer diagnosis. It is perfectly acceptable to mourn and grieve the losses and changes. Through that grief process comes healing and when done together as a couple, a indescribable bond is formed.
Early on in my husband's diagnosis, when a radical prostatectomy had left him unable to achieve a full erection sufficient for intercourse, we decided that his losses in this area were no different then if he had lost his vision, his hearing, an arm or a leg.
We went about our research and discussion in the same way that we would have if he were trying to get used to life with an artificial limb or a visual impairment. We talked about his penis in the same way that we would refer to his leg or his eyes.
When I joined the general prostate cancer email support groups shortly after my husband's diagnosis in November 1996, I was somewhat dismayed by the fact that few couples on the lists had been able to have intercourse after prostate cancer treatment, despite trying the various erectile dysfunction (ED) treatments available.
Reading about these experiences chipped away at my hope for the future of our intimate life together. Though my husband's urologist/surgeon had assured him that there were treatments available to help restore his sexual function, I began to think that his doctor was not being honest, because it seemed that few couples that I knew were able to fully benefit from those treatments. The partial erection that many men got from the treatments were nice, but because they lacked the rigidity for intercourse, they weren't of any practical use.
Prior to these discussions and questions on the general PCa lists, not many women were talking about these intimacy issues. Whenever a woman did write about these things, it was to say that they loved their husband regardless of what they could or couldn't do sexually, and that they were perfectly content with a sexless marriage as long as their husband was still alive.
The men, of course, talked openly about their difficulty in coming to grips with these losses. They talked about how they felt like they were less than a man because of the sexual changes. Many expressed their sadness that their wives would not discuss these issues or help them in their quest to regain this function.
I had my own ideas on this topic. Though I loved my husband deeply, I was not ready to say goodbye to such an important part of our life together. I was thirty-two at the time and he was forty-six when he was diagnosed. I knew we weren't ready to become one of those couples who were content to just "snuggle" or "hug."
We knew that there were treatments available that could restore the ability for Bill and I to have intercourse, and that there must be other men out there who had been successful at regaining their ability to create an erection rigid enough for intercourse. We felt as if it was just a matter of asking the right questions to the right men.
Though there were many couples on the lists who have not been able to resume their sexual life together. We did find encouragement, however, from the few men who had found the right treatment for them. Bill's first attempts at ED treatments were very disappointing, so much so that we almost gave up.
We were impatient and we became frustrated when the first few treatments that he tried ended in failure. I began to understand why it seemed that very few couples on the lists had been successful at their attempts to treat ED.
When it became apparent to us that my husband was not going to regain full use of his penis without some form of treatment, we followed his urologist's suggestion to try a penile injection for ED called Caverjet. We met the urologist at the hospital because this first dose needed to be done in a safe environment in case there was any type of alarming reaction to the medication. We were shown a brief video on how to administer the medication and then the doctor talked me through that first injection into the shaft of Bill's penis.
Because of the combination of Bill's less than perfect eyesight, and his overwhelming anxiety to put a needle into his penis, I was elected to administer the first injection. The urologist had him start out at the smallest possible dose that first time. We were instructed to increase the dosage by two micrograms each time that he used the injection at home, in hopes of finding the right amount to create a usable erection without causing priapism, which is a prolonged erection that some men experience when using Caverject.
We were taken into in a small treatment room just off the emergency room at Eastern Maine Medical Center. After I had successfully administered the injection, the urologist left us alone for a few minutes suggesting that we try various forms of penile stimulation so that he could see how well Bill responded to the first dose. He even left a stack of sexually explicit magazines for Bill to look at.
After a few minutes, the doctor came back. He touched Bill's penis and announced his pleasure in what he was seeing and feeling. He felt confident that because Bill had experienced a partial erection on such a small dose, that he would do very well when we found the right dosage. Bill felt some aching in his penis, but we were told that it was normal and that it would go away over time as his body became used to the medication. We were sent home with our own video in hopes that Bill would eventually become comfortable enough to inject himself.
Over the next few of weeks, we tried the injections on numerous occasions. Caverject could only be administered three times a week. We were only allowed to increase by two micrograms at a time, so it was a few weeks before it became apparent to us that Caverjet was not going to work with Bill. He was never able to inject himself, and even with me administering the needle, Bill always felt weak and light headed after the needle was put into his penis. He said that the smell of the alcohol wipes took away his ability to become aroused. He noticed that with each increase in the dose, he experienced an increase in the aching sensation.
After this first disappointment, it would have been so easy to just throw in the towel and give up, but Bill and I weren't the type to give up so easily. In some ways, Bill's denial protected him in those first few months. In his mind, he believed that it was just a matter of time before he would find the right treatment for his ED and perfect its use. He swore that we would eventually be able to have intercourse once again, and that until we could, we had other ways to give and receive sexual pleasure. There was only one time when he lost hope and suggested that if I wanted to get out of the marriage, he would understand.
Bill didn't read all the stuff on the prostate cancer lists as I did, so he was more sheltered from the numerous stories of the failed attempts at ED treatment that I had read in those first few weeks. I gained so much helpful information on the lists on all aspects of the illness, but I also was deeply impacted by the stories of ED treatment failures and sexless marriages. Bill had no idea of the dozens of accounts that I had read of the failed attempts by many couples to regain the ability to have intercourse after prostate cancer treatment. I felt that those accounts would only take away his hope and at that point hope was all that he had.
In the early months of Bill's diagnosis, sexual dysfunction was our primary concern because we did not allow ourselves to think about the end of our journey. Focusing on ED and recovery took our minds away from advancing disease and Bill's eventual death. We were set on overcoming the sexual hurdles that we were faced with in the early weeks and months after Bill's diagnosis. After his failed attempt at Caverjet, Bill just wanted to know what he could try next.
Luckily, we had learned early on that orgasms were possible for men even when the penis is completely flaccid, so we were still able to give and receive sexual pleasure. Bill had some urine leakage at arousal and during orgasm, but we were told by a urologist that small squirts of urine during oral sex would not cause any harm to me.
The second treatment offered to Bill by his urologist was a pellet called MUSE that was to be placed inside the urethra at the tip of the penis. Our friend from California had tried MUSE and gave it fairly good reviews. Bill welcomed a pellet in his penis much more than he had a needle. We were so hopeful that this second treatment would work. After administering the pellet with a small applicator, Bill was to roll his penis between the palms of his hands to enable the medication to be evenly distributed.
Almost immediately Bill began to feel a burning sensation in his penis. At first it was only a slight burning sensation but after a few minutes it turned into an ache that was much more severe than the one he had experienced with Caverjet. He experienced a slight increase in blood flow to his penis, but it lacked rigidity. He could not feel arousal because of the discomfort. As Caverjet had ended in disappointment, so did MUSE. Again, we could have given up but we pressed onward.
Bill was diagnosed a few months before oral tablets for ED came on the market. We actually knew about Viagra long before the commercials about ED began to be seen on the airwaves because one of our friends from California had been involved in one of the Viagra research studies. This man had discussed his experience with Viagra long before we heard about it in the news.
ED still wasn't talked about openly by the general public, although there was a steady stream of Viagra and ED jokes on television, radio, in newspapers and online. Many of our friends and family began to tell the new Viagra jokes that quickly came to the surface once Viagra was advertised. I was disgusted by the insensitivity of these jokes and comments. I felt that there would be an uproar by women if these same type of jokes surfaced if a new treatment to restore breast tissue after a mastectomy was found. It was heartbreaking to hear these jokes.
I began speaking up against these type of jokes whenever I heard them. I wrote an op ed that was printed in two newspapers. I had no trouble telling people how devastating it is for a couple dealing with ED. If I heard one of the jokes, I would look the person right in the eye and ask them if they realized that the majority of men who experienced ED did so because of another underlying medical condition. I told them that it was cruel to make jokes about men who not only were fighting illnesses and medical conditions, but who also had to suffer one of the greatest losses that a man could experience.
As with Caverjet and MUSE, Viagra was equally disappointing. What was even more disturbing was the fact that Bill's health insurance through Coca-Cola would not pay for Viagra as it did for Caverjet and MUSE. The pills were around $10 a piece which we had to buy them with our own money. We only bought a few at first because we did not know if they would work for Bill.
Oh, if only a pill would have done the trick, but it didn't. There was increased blood flow, but again there lacked rigidity. This time he did not experience any discomfort in his penis which was a slight improvement over the two other treatments that he had tried. But Bill was left with a stuffy nose and a slight change in vision.
Shortly after our failed attempts with Viagra, I remember hearing a family member crack one of the jokes about Viagra. I told her that it was insensitive to tell those jokes, especially in front of a couple who was trying to recover from the sexual dysfunction caused by cancer treatment. I told her that there was nothing at all funny about ED or Viagra, and that these jokes were even more devastating to the men like Bill who had tried Viagra and had failed to be able to have intercourse. She quickly changed the subject and never again told a Viagra joke in our presence.
It was difficult for Bill to cope with those failed attempts. As our list of choices began to decrease, so did our hope. With each failed attempt, it was more difficult for us to move on to the next treatment on the list. We began to get very discouraged and Bill was beginning to turn away from intimacy. He was beginning to feel sorry for himself. He would become frustrated when our foreplay could not lead to intercourse. He began to feel like it wasn't worth the bother if we could not make love as we once did. There many tears shed during that time, and much heartache and sorrow.
There were only two things left on the list of accepted/standard treatments for ED. There was the vacuum erection device (VED) and the penile implant. Neither of us had wanted to think about the implant because it meant another invasive surgery, and Bill had already been through so much. He was also getting ready to begin thirty-five sessions of pelvic radiation four months after his surgery failed to cure him of his cancer.
The description of the VED that I found online made it seem like it was something out of a sci-fi movie. I understood mechanics, but I couldn't quite figure out how and when one would use the VED in the midst of arousal and foreplay. We found out that Bill's insurance would cover the $425 device, but we had to pay that amount up front and then wait several weeks for reimbursement so we borrowed one from someone we knew who also dealing with ED.
Basically there was a long plastic cylinder that went over the penis. Attached to the cylinder was a hose connected to a small hand pump. The end of the cylinder was to be covered with lubricant and was pushed up against Bill's scrotum and pelvic bone. On the outside of the cylinder, on the end next to Bill's skin, a small specially made rubber band was to eventually be pulled off the tube and onto Bill's penis to hold the erection that the vacuum device created.
We made the mistake of expecting to have intercourse after the first attempt to use the VED. In retrospect, that was a bad idea. We had no idea what we were doing and we should have spent more time experimenting with the device before we attempted intercourse. The instruction video was missing so we weren't one hundred percent sure what we were doing.
Basically Bill activated the pump which drew blood into the penis from the vacuum affect. When an adequate erection was created, the band would be slipped onto the penis to hold the blood in and the cylinder was pulled away from the body. Bill pumped the device several times and when his penis seemed rigid enough, he removed the band and pulled away the device.
We immediately tried to have intercourse but the erection seemed to become less rigid as time went on. Bill also said that his penis felt weird and the longer the band was on the colder his penis got. The directions said that the band could only be kept in place for thirty minutes. Our attempt at love making was so awkward and ended in disappointment.
Bill was ready to give up at that point. In his mind he was done trying any more ED treatments. He set his mind on coming to accept that for the remainder of his life, he would be unable to have intercourse. His resignation was heart wrenching for me. I felt some guilt thinking that maybe I had pushed Bill too much.
I thought to myself that had I known how all of our attempts at the treatments would end, I would have never encouraged Bill to try each treatment. I began to feel that we would have been better off to have never tried any of them because now Bill was even more devastated about his ED than he had been before he unsuccessfully went through the list of treatments.
For a couple of weeks we both just wanted to forget about sex or intercourse. Bill would roll over and appear to be asleep as soon as we got into bed. There was no touching or showing of affection. I think in Bill's mind, he didn't want to start something with me that he could not finish in the way he was accustomed to. He had grown tired of oral and manual sexual stimulation.
In addition to the ED, the intensity and pleasure associated with Bill's orgasms had greatly decreased after his prostatectomy, as is the case with many men. The prostate gland was no longer there to flex and spasm during orgasm. There were no seminal vesicles to create ejaculate. His orgasms were dry and lacking in intensity.
With a partial erection, unable to have intercourse, Bill no longer got the same enjoyment from sexual activity that he did during the first ten and a half years of our marriage. By that point, to him it was better to refrain from sexual contact, rather then experience the frustration and disappointment. All of the hope that I had for our intimate life began to leave me. I began to understand why so many of the other wives on the PCa lists had resigned themselves to sexless marriages. I realized that at thirty-two, I was about to join their ranks.
But somehow in the next couple of weeks, Bill and I decided that we hadn't given the VED a good enough try. I had met a man online who had successfully used the VED for several years and after some very direct questioning and discussion, we all agreed that Bill and I should try the VED one more time. We had already given the VED back to its owner.
We took money from bills that should have been paid and bought our own VED. The one that we bought was an upgrade from the model that Bill had used. It was a one piece device and the pumping mechanism was so easy compared to the one that we had borrowed. It was Osbon Erecaid "Esteem" model. There was a video that came with ours so we watched it together several times before Bill used attempted to use it. We had made a pact with each other that Bill would experiment with the VED for at least two weeks before we would try intercourse.
Our online friend and the video had suggested trimming Bill's pubic hair to make a better seal against the skin. Our friend also suggested trying to use the VED right after a warm bath, and that several sized bands should be tried to find the one that could hold the blood in Bill's penis without causing discomfort. So for the next week or so, Bill had three practice sessions a day with his VED. He experimented with the pumping technique and realized that if he slowly pumped and then released a couple of times, he could eventually create a very rigid erection. After each fifteen minute practice session he would apply different sized bands each time to see what size could hold the erection.
Though to him, his erection felt somewhat artificial, he wasn't complaining much when he realized that he was able to create a firm erection that did not lose its rigidity. In that first week he learned how to pump and band his erection. He found the right size band for his penis. Even though we had vowed to wait two weeks before attempting intercourse, there came a point at the end of the first week that we both were more than ready to give it a shot.
We had read and been told that sexual positions that allowed the man to remain upright were the best positions to attempt for a man using the VED. Though we had been fairly traditional and had for the most part enjoyed the missionary position, we found other positions worked best with the VED created erection. Needless to say, our first successful attempt at intercourse ended rather quickly, but this time it ended with smiles our faces rather then the anguish that had shown on our faces after all of the other failed attempts.
Bill began to smile again and he felt so much better about himself. He was thrilled that he could once again have successful intercourse and he was pleased to find that the intensity of his orgasms were stronger when he was able to have intercourse. He was like a little kid with a new toy. He no longer turned from sexual contact but instead he began to initiate it.
We found that things worked out best if we prepared the VED and then laid it aside while we had foreplay. When were ready to have intercourse, Bill would stand up to create an erection. Since he had a great deal of natural blood flow in his penis during foreplay, it didn't take any time for him to pump and band his penis. With each successful attempt, we felt normalcy return to our intimate life. Even though some aspects of our experience had changed, we were both just so grateful to be able to finally have intercourse after months of disappointment and frustration.
When it became apparent around eleven months after his diagnosis that Bill's cancer had not be cured by surgery or radiation, we knew that the next step was for him to consider going on hormone therapy. Since testosterone is the fuel for prostate cancer growth, when it is blocked from production, the cancer can lie dormant for a long period of time or at least it will slow down in its growth. We knew that the standard treatment after failed surgery and radiation was to go straight to hormone therapy, but we both dreaded that happening.
Prior to Bill's radical prostate surgery, he went on hormone therapy. Many in the prostate cancer community believe that surgery might be more successful if hormone therapy is begun before surgery, as it has the potential to shrink the prostate tumors and thus make the surgery easier and possibly more successful. Bill began taking Casodex pills and then had his first 30-day shot of Lupron a little more than a month before his surgery. He had his second shot a couple of days before his surgery.
Within a few weeks of starting hormone therapy, he began to experience radical changes in his body. He lost all of his body hair. He never did have much chest hair, but what little he had disappeared. There was absolutely no hair left on his arms or legs. He began to experience bothersome hot flashes and night sweats as his body went into male menopause. He began to have breast growth and tenderness. His libido went completely out the window and after the second shot he began to experience erectile dysfunction and an inability to reach orgasm.
After his surgery, when his PSA dropped to undetectable and we all thought that perhaps he had been cured, he decided to go off hormone therapy. So by the time he had recovered enough from surgery to begin his sexual recovery, the hormone therapy had begun to leave his system. We could tell because the hot flashes and night sweats stopped and his libido returned. Bill had a negative experience with hormone therapy. He hated how he felt once his body stopped producing testosterone. To him, hormone therapy was worse than the surgery.
A little more than four months after his surgery, Bill began thirty-five sessions of pelvic radiation. We were all in hopes that this follow up radiation would kill any of the remaining cancer cells in the pelvic region. It was a long shot given his disappointing post surgery pathology report, but it was worth trying to see if that was the case. After surgery, the pathology report showed that all of his surgical margins were positive, meaning that cancer remained in many areas including the bladder neck, urethra and where the seminal vesicles once where located.
Even as he was doing radiation, I continued to research the treatment protocols that would be used if the radiation failed to cure him. The next step would be to return to the hormone treatment that he had done prior to surgery. This bothered Bill a great deal because he did not like how he felt while on hormone therapy. He had just perfected the use of the VED and he was just beginning to feel good about his masculinity, so when he learned that hormone therapy could be in his future, he was very upset.
Unfortunately, three fourths of the way through radiation, his PSA began to double by whole numbers. We knew that the radiation was not going to cure his cancer. By that time we were beginning to wonder if he should finish radiation, but since the radiation hadn't done anything to him other then cause fatigue, he decided to finish the remaining treatments. It was at that time when we began to wonder if he should seek out advice from another facility.
In October of 1997, we went to Dana Farber in Boston for the first time. Back in Maine, Bill's oncologist had wanted him to resume Lupron but Bill was in disagreement. He wanted to go to Dana Farber to see if anything else could be done so that he would not have to go on hormone therapy again. As luck would have it, his oncologist at Dana Farber, Dr. William Oh, told us about a different hormone protocol that was being studied at DF. It was referred to as "Potency Sparing Hormone Therapy."
Basically it was a lesser form of hormone therapy. Their study was beginning to show some promise as men with incurable prostate cancer were able to lower their PSA without suffering as many side affects as standard hormone therapy. Dr. Oh also talked about how trying this therapy first might extend Bill's life. There average life span of a man back then with Bill's cancer stats was 2-4 years. Once hormone therapy was begun, many men experienced a rise in PSA/cancer growth by eighteen to twenty-four months.
Dr. Oh's theory was that the longer one refrains from going to standard hormone treatment, the longer one might survive, especially if this lesser form or hormone therapy controls the PSA. We left Boston feeling upbeat that he had been offered a different approach then he had been in Bangor.
When he returned home he began high dose Casodex and Proscar. The most bothersome side affects for most men on this treatment were breast growth and tenderness, so to prevent breast growth, he had three sessions of radiation to his breasts before he began the treatment.
Within five months Bill's PSA dropped to undetectable and it stayed there for two years. His breasts were bothersome but he learned to live with it. He became a little embarrassed about having anyone see his breasts. He used to say that he had breasts any teenage girl would envy. His sexual function remained intact. His libido was fairly strong and with using the VED, he was able to have intercourse and experience orgasms. Life was going pretty well until his PSA began to rise two and a half years after he had started that protocol.
At first we had hoped that it was a glitch in the lab, so another PSA was taken. This showed another rise so it became apparent to us all that the cancer had figured out how to grow again. We knew we were at the place that Bill had dreaded for so long. It was time for him to go back on standard hormone therapy. We were worried about the rising PSA and knew that hormone therapy would more than likely reverse that trend, but at the same time we knew the changes that resuming that treatment would bring to Bill's body.
One day out of the blue, Bill told me that there was something that he had to discuss with me. He said that he had been thinking about something for a while and now he had made up his mind. He wanted to have a penile implant. Though we had never considered one before, now it began to make sense. Bill's biggest fear was that when he began standard hormone therapy, that he would have no libido and no blood flow into his penis. He was afraid that once he had no libido that he may lose interest and not be motivated to use the VED.
Bill felt strongly that his transition to hormone therapy would be made easier if he had a permanent solution to his erectile dysfunction. He was so afraid that once he lost his libido again that he would lose interest in being intimate with me. He felt that if he had a penile implant, he could easily have intercourse with me even if he couldn't feel any pleasure himself. He told me that he wanted to get the implant for me because he had made up his mind that regardless of whether or not he could reach orgasm, he wanted me to be able to feel sexual pleasure through intercourse.
I was somewhat shocked by his idea, but as I began to think about it, it made perfect sense. The scary part was that if the implant surgery had any complications and was not successful, then the tissue inside the penis would be damaged and the VED would no longer work. We had to decide if it was worth the risk.
By then we had become very familiar with Boston and we had become strong believers that the doctors in Boston were much more up-to-date on things than the doctors here in Maine. We asked his oncologist if he could recommend someone who did penile implants. He suggested Dr. Michael O'Leary at Brigham and Women's.
We made an appointment to have a consult. Dr. O'Leary was a funny guy. I suppose one needs humor when they are working with penises all day. He explained the surgery and showed us an actual device so that he could explain the mechanics of an implant. Bill would have the two-piece Ambicor penile prosthesis. A cut would be made in his scrotum where the device would be inserted. It consisted of two small tubes that would go inside the penis. The tubes would be connected to a small bulb in his scrotum.
When he wanted to create an erection, he would squeeze the bulb pushing the liquid from the reservoir into the tubes in his penis creating a rigid erection. The downside was that even if it was a success, the blood flow that Bill presently had (85%) in his penis during arousal and orgasm might not be there after the surgery. Bill might have been left with the ability to have a rigid penis, but it might be minus the width/thickness that his natural blood flow presently created. There was a small chance of infection or mechanical failure in which case the device would have to be removed and possibly replaced.
All things considered, Bill wanted to go ahead with the surgery even though there was a chance that we might never be able to have intercourse again if something went wrong with the surgery. We felt very comfortable with Dr. O'Leary's bedside manner and with his expertise in this area. We found out that he was the best of the best in Boston so we made an appointment for Bill to have the implant surgery. We both felt in our hearts that given the fact that Bill was to begin hormone therapy soon that having the implant made sense.
I took a row of seats out in the van and put a reclining lawn chair in the back so that on the six hour drive home Bill could sit or lay in whatever position made him comfortable. We asked a nurse friend to come with us so that there would be a second driver in case Bill needed attention on the drive back to Maine. We booked a hotel for two nights in Boston.
Though we were somewhat nervous, we were also excited at the possibility of our sexual experience becoming more like it once was before he had to use the VED. With the implant, an erection could be made in two seconds by pumping the bulb in the scrotum. When Bill no longer needed an erection he would simply bend his penis and the fluid would return to the bulb.
The morning of his surgery, we got up very early. I barely slept all night thinking about the surgery and about all of the ways that it could go wrong. I was second guessing our decision when I thought about the fact that if this surgery had complications, I may never be able to have intercourse with Bill again. I thought about the upcoming start of his hormone therapy. I was both nervous and excited about how things might go with his surgery. He was nervous wreck as he often was before a surgery, procedure or test. But he stood firm by his decision. He told me to trust him that everything was going to turn out well.
When the surgery was over the doctor spoke with me briefly before I was able to join Bill in the recovery room. The doctor told me that Bill's last words to him before he went under was, "Doc, do the best you can to put in the biggest device in that you can fit in there!" It was just an example of Bill's whit that never left him. Even when he was on his death bed many years later, he was still zinging one liners and making people chuckle.
Of course I was curious what things looked like so I immediately lifted the covers to see what I could see. I couldn't see much because there were bandages wrapped around his penis, and his penis was inside a jock strap where it would stay for the next six weeks to keep things stable as the tissue was healing.
When I eventually was able to see the area when the nurse came to change the bandages, all I really saw was a massively swollen penis and scrotum that was quickly turning black from bruising. For a brief moment I hoped that we had not made a mistake, but I remembered Bill's desire for this surgery and I remembered his assurances that everything was going to be fine.
Bill stayed in the hospital one night. Bill had strong pain medication for the ride home so he slept a great deal of the way. Once we got out of Boston, I let my friend drive and I crawled into the back seat with Bill and put my arm around him. We both started crying. It was a relief kind of cry, but with some "I hope that we made the right choice" kind of crying mixed in.
We had worried about the painful recovery. Bill had heard a mix of experiences of other men that we knew online who had the penile implant. He had called several of them before he had the surgery. Some told stories of unbelievable pain and a long recovery. We were so afraid that Bill would have a similar experience with pain, but luckily his pain was minimal. He didn't feel like doing much that first week, but as he headed into the second week the pain had diminished enough that he stopped taking the prescription pain killers and switched to Tylenol. The second week we laid out in our lawn chair a lot, although Bill could not lay on his stomach.
One thing that concerned Bill was a spot on the underside of his penis where it felt numb to touch. He was afraid that he might not regain full sensation there but his fears were comforted at his two week check up with Dr. O'Leary. He said everything looked great, there were no signs of infection and he felt confident that by his six week checkup the numbness would be gone. He reminded Bill that there had been a lot of trauma to his penis during the surgery and that it would take the a few more weeks for him to fully recover.
He told Bill that the implant could not be activated until six weeks post op, but that he could resume oral sex whenever the pain was gone. He told us to be patient and that he would see us in four more weeks for activation day. By the third week post op, Bill was able to do his chores around the house and he was able to begin mowing. He was really amazed that his pain had almost subsided.
By the six week check up, all of the numbness had disappeared, along with the swelling and bruising. Bill was left with a pretty impressive penis in its flaccid state. Prior to the implant his penis had atrophied and would often appear to be sucked up inside his body. It used bother him that his penis had shrunk from his ED and that his testicles were also very small because of the partial hormone therapy. On the few occasions that he did feel sorry for himself about his ED before the implant, it was always because his manly parts had shrunk and atrophied.
With the implant, his penis always looked partially erect. The bulb in his scrotum made his testicles appear larger. It made a bigger bulge in his pants and he became so much more confident about his manhood. For the first time in three and a half years since his diagnosis, he wasn't afraid to go into the men's locker room. Prior to the implant he was embarrassed at the thought of another man seeing him naked. After the implant he almost wanted to show the whole world the neat device that he had grown to love.
The doctor did what he called "the towel test" before he sent us on his way. He draped a towel over Bill's penis and then said he passed the towel test. For the first time since he became impotent, his penis could actually withstand the weight of a towel and stay upright. Bill as filled with joy. He showed Bill how to activate and deactivate the implant and then sent us on our way. He told us to have fun and to come back for a ten thousand mile check up.
A short time after we were able to enjoy the implant, Bill began hormone therapy. Bill tolerated Zoladex so much better than he had tolerated Lupron prior to his surgery. He did not have hot flashes or night sweats. Once he went off high dose Casodex his breasts almost returned to normal. We kept expecting Bill to lose the ability to feel sexual pleasure and orgasm but it never went away like it had on Lupron. Bill was never "horny." His body didn't physically tell him to pursue a sexual encounter as it once had done, but mentally and emotionally he had desire.
Once foreplay would begin and there was tactile stimulation, Bill became aroused. During intercourse, Bill had normal feelings of pleasure and climax. Even on hormones, our sex life improved because we no longer had to think about the VED. Sex was once again spontaneous and could be done without any forethought. He could keep the implant activated for as long as he wanted. Even with the presence of Zoladex, Bill still had blood flow into his penis when aroused. The combination of the blood flow for tumescence and the implant for rigidity, Bill appeared to have a normal erection. He never again considered himself an impotent man.
Before the implant, Bill said he used to walk into a room full of men and he would think that he was less then all the other men. He once told me, "You just don't know what it is like to walk into a room of men knowing that you are not like the other men, that you are not a real man." After the implant he later told me, "I walk into a room full of men now and I know that I can outlast any man in the room."
There were times during the next few years that I would get upset with Bill about his lack of initiation. I tried to understand that he never got physically horny, but there were times when I wanted to be pursued rather than be the one pursuing. He would do a good job of remembering for a while, and then he would forget how important it was for me to feel desired. If I told him how I was feeling, he would always try to do better. In in turn I would remember that it was the cancer and treatment causing his lack of desire and it had nothing to do with me.
One of the things that I experienced from a female perspective was that I often questioned my womanhood. I had always done that anyway because I had grown up a tomboy and I have always questioned my femininity, but after Bill became impotent and after he was chemically castrated, I sometimes felt less than a woman. I had to remind myself often that the reason Bill didn't physically desire me was due to the hormones and not because he didn't see my as a woman. And that he didn't get an erection on his own because of his cancer treatment and not because he didn't find me stimulating. It was something that I had to work out in my mind.
Bill and I learned so much about our individual sexual responses, as well as each others after his cancer diagnosis. We went from completely taking sex for granted to almost immediately realizing the that it is a beautiful and sacred part of a couple's life. When it is taken away there is a tremendous feeling of loss.
After Bill became impotent, I had to do what I could to make him see that I still saw him as a man even though he felt less than a man. I touched him more often. I hugged him more throughout the day. I flirted with him. I told him how lucky I was to be with a man like him. I grew to understand that those things helped him in coming to terms with his losses. It helped him realize that I loved him and that I wasn't going to leave him, and that I still saw him as a man.
He often thanked me for openly and honestly sharing with him my sense of loss because he said if I hadn't talked about it and cried about it with him he would have thought that it didn't mean much to me. My willingness to grieve and talk with him showed him that I also felt a great sense of loss.
The intimacy that developed over the years brought us as close together as any couple could be. We were able to freely discuss intimacy and sexuality. We learned to tell each other what felt good and what we needed. Our intimate moments involved full body contact and wasn't just confined to our sexual parts. Caressing and kissing became so important. There were many times when Bill would just want to lie naked in bed and feel our bodies next to each other.
And then as Bill grew more ill, intercourse became even less important in that last year. We were able to make the transition from having intercourse to having "outercourse." There was a period of time when Bill could still feel sexual pleasure but when intercourse was too physically demanding. He was able to have a better experience if he could just lay there and have me touch, stroked and stimulate him.
One of the most intimate things that we did in the last couple of years was the daily ritual of bathing each other. As I reflect on those moments now I realize how beautiful that it was for us to express our love for each other that way. Few couples are able to have that type of intimate experience. Bathing each other that way was so beautiful and tender. It's like we each tried to wash away the other's sadness and sorrow each day. We felt fresh and clean after bathing each other. We felt bonded.
And then when Bill could no longer feel sexual pleasure, we focused on touching, caressing and holding each other. We became very focused on each other's faces and heads in those last months. We would take turns feeling every part of each other's face. Because of misdiagnosed strokes, Bill lost his vision seven months before he died and so it was only through touch that Bill could "see" my face.
Touch became so important to him when he no longer had eyes to see. He would touch my cheeks and then gently swipe of his fingers over my eyes. He used to stroke my hair as I laid my head on his chest. He would often do that for a long time, telling me the whole while that I was going be OK.
He knew how hard it was going to be for me to lose him so in those last months he often told me that I was going make it through to the other side. He would run his hands over my forehead and push his hand through my hair telling me that it was going to be hard but he knew I would make it. Bill died peacefully on April 1, 2007 at the age of 56 1/2. He fought nonstop for ten and a half years before losing his battle with prostate cancer.
We shared a beautiful love. It has been so hard to let go of that love and those memories of love. I honestly don't know if I can make the switch back to approaching sex from a physical point of view after approaching it from an emotional, mental and spiritual point of view for so long.
I can only hope to be with an understanding man someday who can love me despite my flaws and past trauma.
More About Wendy
Wendy is the widow of Bill who succumbed to prostate cancer after a valiant battle against the disease. She is the mother of three sons (now 22, 23, and 26) and a grandmother to two grandsons (2-1/2 and 5). She is a graduate of the University of Maine at Machias, is a freelance writer, and a member of the Passamaquoddy tribe. Wendy lives on the Maine Coast with her three Labrador retrievers and enjoys daily hikes in the woods and 15 - 20 mile bike rides, weather permitting. Wendy has been involved in the prostate cancer world since her husband was diagnosed with the disease in November, 1996. At the time of his diagnosis, Bill was 46 and Wendy was 32. She has written extensively about sexual recovery/rediscovery for ten years on the Prostate Cancer Intimacy List (PCAI), an online support group for the sexual issues surrounding the prostate cancer diagnosis. She is a trained bereavement facilitator (by Hospice) and helps to facilitate a Hospice bereavement support group.