|other personal autobiography
me and my prostate
when your most embarrassing fantasies come true
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this account is frequently explicit about excretory and genital functions.
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Last revised October 4, 2008
Half-way through my 65th year, in August, 2006 (i.e., while I was 64), I learned that I might have prostate cancer. A month later it was confirmed. This is a detailed and explicit account of my experience since then.
men can have vastly different
experiences, and my personal odyssey through surgery and ensuing
complications is only one.
Though highly educated in some ways, I am woefully
ignorant about my body and would have
welcomed some idea of what might happen. I suspect the
overall emotional and physical arc common to many prostate cancer
those who care about them.
this often very explicit account in the hope it will help
other men and their families and partners plan and cope.
You should know that nearly all men (at least in the U.S.) die with prostate cancer, and in most cases it is never treated because by the time it is identified, the patient is likely to die of old age sooner than the cancer. The cause is not known, though there is speculation that it has to do with diet. I wouldn't be surprised if it also has to do with environmental pollutants, whether carbon emissions, pesticides in food, or something else. I don't know anything about comparative rates of occurrence from one country to another, or whether, like colon cancer (which IS often related to diet), prostate cancer is more common in industrialized rather than agricultural nations.
Two or three years before my diagnosis of prostate cancer, I complained to my GP in New York City that my sleep was being disturbed nightly by need to urinate. I had an enlarged prostate, he explained, common to men my age (I later learned that the prostate typically starts enlarging in one’s 30s), which squeezes the urethra and makes it less tolerant about deferring urination. Urinating once or even twice a night, he advised, was not unusual at my age (then 61 or 62), but it would be a good idea to start seeing a urologist now for a baseline, and if the frequency of nightly urination increased, to have my prostate checked at once. In the meantime, I should continue having regular PSAs, which I think I had already begun at that point, to keep an eye out for significant fluctuations.
At that time I was splitting homes between Manhattan and Madison, Connecticut, on the Connecticut shoreline 20 minutes above New Haven. Because I was spending more and more time in Madison, I found a urologist there, and by a stroke of luck picked Thomas Martin out of the insurance list. He has seen me through my troubles with great skill and support.
Everything was fine for a couple of years. My PSA scores were in the middle of the normal range. Though the test was not highly precise, in its 15 or so years of use it apparently has revolutionized the ability to detect prostate cancer early on.
In August, 2006, I felt I was urinating more frequently in the night. Remembering my NY GP’s advice, I saw my urologist’s physician’s assistant, who doubted anything was wrong but had a PSA done just in case. (Incidentally, the PA is a woman, and that is noteworthy because her fingers were much slimmer than those of any men who had examined me over the years, and hence the rectal exam was far less uncomfortable. An obvious point once stated, but I had never previously thought about it.) The PSA was a bit elevated. Not much, she told me, barely above normal, but the percent increase was high enough that—again just as a precaution—she would have Dr. Martin do a biopsy on me.
His next available time was a month away. The only prep I can remember is taking a fleet enema a short time before the procedure. My wife (who joined me during the procedure) and I went in viewing this as a necessary waste of time. I couldn't see what was happening, but a tube was inserted in my anus, and through the tube the doctor passed a video camera and some kind of teensy snippers. The most painful part, as he warned me, was when he anesthetized key nerves in the area. Other than that, Martin snipped off about a dozen bits of my prostate from different places (he said the number could be anywhere up to two dozen) to send for biopsy.
In rare cases a patient can develop an infection (septicaemia) from a prostate biopsy, but that is typically curable without much difficulty. You get antibiotics to take before and after the biopsy, and if you have any adverse symptoms like fever after the biopsy, you are immediately to seek help. I had no after-effects, but my brother-in-law, who had a biopsy in late January of 2008,did--and refused to go to an emergency room for many hours. He ended up sedated and asleep, with numerous tubes and medications entering his body, for over three days in an ICU and came within a whit of dying. (He did recover.) This is EXTREMELY rare.
Within a week, Martin phoned me. “The bad news is, you have prostate cancer. The good news is that if you have to have a cancer, this is the least dangerous, your cancer seems minimal, and we’ve caught it very early.” My Gleason grade of 6 was typical, and the cancer appeared to be in only 20% of my prostate. My prognosis was excellent. (It is possible to have a virulent level of prostate cancer that is incurable. The doctor who founded Martin's practice, alas, died of incurable prostate cancer several months after my own surgery.)
I give credit to my NYC GP for having counseled me well so that I did not put off seeking evaluation when my frequency of urination increased.
TROLL'S RULE: Get PSAs as directed--and if not directed, ask about them. No excuses.
Given Martin's reassurance, from that time I have felt diffident about my cancer versus others' far worse and more dangerous ones and, until recently, viewed this whole experience as little different from having an appendectomy. I occasionally felt sorry for myself, but for the most part (so far as I remember) proceeded with my life with little disruption. (Presumably each man will handle the situation in his own unique, equally legitimate way.) One of my more conscious concerns was how much tennis I'd have to miss.
Now came some long consultations while Martin, with amazing patience and precision, carefully explained the situation and the options for dealing with it. Since I viewed this as a relationship decision, Maxine and I always went together for such discussions; and as time passed, it was indeed extremely helpful to have her join in wrestling with the issues. This visit took an hour and a half. My first question (as seems to be true of all men I've met who have had prostate cancer) was about how this would affect me sexually. That depended on the treatment method we chose, though I think we also learned that in any event I wouldn't be likely to be sexually capable for a few months. (I will be saying more about this.) At 64 I was relatively young and had a decent life expectancy. So a method of planting radioactive seeds in the area of my groin, suitable for men in their mid-70s and later, was not recommended. We could choose to do nothing and watch for changes (“watchful waiting”), but neither my wife nor I wanted to do that. Even with surgery, there was a small chance the cancer could return after several years, perhaps in other parts of the body. (Yes, you can have prostate cancer anywhere; it's a kind of cancer normally but not necessarily located in the prostate.)
Two options lingered. Dr.
Martin and a colleague, David Hess, had pioneered a robotic,
Vinci, surgery in
Connecticut, and they had performed the surgery enough times (about 60
at that point) that it
quite familiar to them.
This robotic surgery has been
used mostly for prostatectomies,
but had started to expand to other surgeries.
The surgeon sits at a console many feet away from
you and manipulates
fine tools in and out of your body.
Five holes maybe an inch each in diameter are
drilled in your lower abdomen:
in two holes go robotic arms, in a third a camera; a 4th allows
inserting and removing a bag into which the prostate is placed, and the
is for drainage after the surgery.
Before Maxine and I decided, Dr. Martin insisted, we should see a radiation specialist, Francis Cardinale  at Saint Raphael's Hospital, about a recently improved radiation therapy (IMRT). The area around my prostate would be carefully mapped, and then I’d spend 9 weeks going almost daily for radiation. Less painful than surgery, it left a cooked prostate in your body with a minimal, almost certainly not dangerous, residue of prostate cancer cells. You ran a risk of some unpleasant side effects (notably painful urination). It could also damage nearby organs, though the IMRT beam is touted for its tight, precise placement. After visiting with the radiation specialist, I sought further clarification, and we had an e-mail exchange.
After meeting again with Dr. Martin, Maxine and I chose the robotic surgery. By using that option now, IMRT would still be available should the cancer return, but not vice-versa; if radiation comes first, the prostate is so damaged that only the old-fashioned surgery, cutting you open, is possible. (This surgery needs blood transfusions in 30% of cases and takes weeks for recovery.) Robotic surgery meant we would have the prostate out and biopsied (the original biopsy might be wrong, and we wanted to know exactly how bad my cancer was). We would know if the prostate margins were clean (if so, the chances of recurrence are less). The recovery period is relatively short, and side effects are pretty uncommon (remember that last statement as you read on). Chances of incontinence or one form of impotence or another are (supposedly) about the same with robotic or radiation treatment.
At that time, the biggest downside for me, in addition to missing tennis, was having to wear a catheter for at least a week after surgery. My only experience with one had been after a colonoscopy, and it had been miserable. Dr. Martin assured me he would make it tolerable.
NOTES: Since my procedure, I have found, based only on anecdotal evidence, that urologists who do not practice the latest technology may try to push their own favorite procedure and downplay others. Thus, for example, I recently spoke with a urologist who was expecting to operate on my brother-in-law if his biopsy was positive (it wasn't), and when I mentioned my experience with robotic surgery he said he himself does the old-fashioned surgery with a tiny incision and minimal after-effects like impotence, whereas the robotic method requires five holes in your body and.... I listened but recognized that there was no point in probing the issue with him. And he was otherwise a nice guy.
On the other hand, I have also read that the surgeon's expertise is more important than any specific method.
18 months after the surgery, Maxine and I continue to feel we made the right best choice.
Because the surgery would be in a Catholic hospital (Saint Raphael’s in New Haven), I asked whether my medical care could have restrictions placed upon it where theology and medical practice clashed. The answer was no, and in fact I would get—had to get—a procedure not allowed in the hospital under any other circumstances: a vasectomy. This lead me to the realization that I would no longer ejaculate, which, to my surprise, shook me up for a few days. (18 months in, it retains a background noise of regret.) It is curious to notice when the chips are down what self-identifiers are most important to us, especially around our sexuality. Had you asked me beforehand how I would feel about it, I probably would have shrugged my shoulders and asked what difference it would really make.
I had to go through some tests to make sure I didn’t have cancer elsewhere in my body. One test was a full body scan, which requires you to lie unmoving for what was probably 20 minutes while a large overhead machine slowly travels the length of your body, head to foot, taking pictures. I don’t remember what other testing was conducted. I also had to have a physical a few days before the operation to make sure I was in shape to undergo surgery.
My operation was scheduled for October 24, my father’s birth date (and, incidentally, the anniversary of the founding of the United Nations); those who read any of my accounts of my relationship with my father, who died in 2003, may wish to pause here and embark on psychoanalytical adventures through the looking-glass.
I tried hard to take the waiting period in stride. I was largely successful, though I got depressed for a day here and there—quite normal, I expect. Given the knowledge that our sex life would probably be interrupted for awhile, I think Maxine and I felt some pressure to exploit the remaining days before the operation—and pressure, of course, usually only makes it harder to relax and do whatever one is feeling pressured about. I note this to help normalize such an experience for other couples, and to encourage couples to do their best to stay mellow in similar circumstances.
The day before the surgery I had to do the same kind of bowel cleaning required for a colonoscopy. (In light of my brother-in-law's later near death from an e-coli infection after a prostate biopsy in January, 2008, I now suspect the cleaning is not because the surgeon for some esoteric reason has to see into your bowels but rather to minimize any e-coli that might escape from a punctured colon.) Because of some evidence that the small bottles of the vile phospho-soda may have drastically bad effects in a few cases, Martin had me use the even more vile Go-Litely (one of a few spellings), a nauseating one-gallon water solution. If you’ve taken this, you know it’s a process worthy of the Spanish Inquisition and almost enough to make you take your chances with cancer. Even as I write these words the memory is making nausea build in my throat.
I reached a point near the bottom of the gallon jug when I knew I could drink no more without vomiting it back up. I called Martin's receptionist to ask whether, with the bottle so close to empty, I needed to do anything further; I suspect she didn't relay my exact question, and I ended up having to use the phospho-soda as well. This was barely tolerable.
As part of hospital check-in procedures, I was asked for a list of all my medications. (It wouldn't hurt to have a printed list, with dosages, to hand over.) At the time, I thought this was to check for chemical clashes with anesthetics or drugs I might be given. After the operation, however, I decided the list was only to know what medicine to give me after surgery, while I remained in the hospital. I wished then I had only given essential medications--in my case, anti-depressants.
I remember being wheeled into the operating room and near the operating table seeing (without glasses) what (in blurred memory) resembled a gleaming metal box, maybe hanging from the ceiling, half the size of a washing machine, with metal tentacles hanging from it. I helped shift myself to the table and nattered briefly with an anesthesiologist without realizing I was losing consciousness.
Afterwards I learned that the operation had gone well—in fact, taken an hour less than the normal six hours—and that my innards were well laid out so that Dr. Martin was optimistic that he had avoided any important erection-related nerves, though it was impossible to be certain. The first four of my five incisions were stapled shut by the end of the surgery. (The fifth, you may arecall, was for drainage.)
I had had a whiplash injury five months earlier and a rotator cuff problem before that, and Dr. Martin seemed to have taken special care for the well being of my neck and shoulders. When a nurse asked before the surgery about such conditions, I didn’t understand my answers would help guide the operation. Afterwards, the whiplash/arthritic pain was no worse than before and probably better, while the rotator cuff, which routinely bothered me before the surgery, hardly hurt at all now.
I woke early or mid-afternoon in a recovery bed with, I think, Maxine and Jason hovering near the foot of the bed—that is, I don’t think I had to wake up alone. I knew Jason was driving from Massachusetts, and I was touched and gratified to see him. (Since this was no more serious than an appendectomy, why make any fuss over me?…) I was in a little pain, but while allowed to push a button that would feed my body morphine (the device automatically limited how much I could take over a given time), I managed only to need it three times during my 24-hour hospital stay.
I gradually came to understand that the five incisions were pretty strong and I didn’t have to worry I might damage them when I moved. The catheter (called a Foley catheter; illustration and discussion below) was, as promised, positioned so that it caused me minimal discomfort; for this I was quite grateful. I did not yet, however, understand how it was held in place—more on that below.
At some point Jason drove home to Amherst. By 9 or 10 that evening I took my third and last hit of morphine and then got out of bed for the first time and walked around the floor. I did this at least once more before I went to sleep, making the circuit multiple times and with little or no support from the nurse accompanying me. Though I moved slowly, I had little trouble walking. (I had to wheel around a support for whatever fluid was being conducted into my body.)
Late afternoon or early evening I started to feel hungry and was allowed to eat some saltines. I probably took some ambien to help me sleep, but I think I slept well. Except for: during the night, the other fellow in the semi-private room started shouting. He was in great pain and having trouble responding to the nurse who came in; so she took the therapeutically famous measure when someone, especially someone with hearing problems or (almost synonymous) a speaker of a foreign language—neither of which was the case here—seems not to understand us: she shouted. Having awakened to a semi-conscious stupor when the poor fellow started shouting in pain, I was now graced with the ongoing disturbance of the nurse’s total oblivion to my presence combined with her frustration that she couldn't soothe her patient’s cries.
While I found my care generally good, the hospital room to which I was moved was alienating, and I couldn’t wait to get out of there. The next morning the drain was removed (pulled out, with a little pain) from the rightmost of the five holes bored in my abdomen. By the afternoon I was disconnected from IVs. I was healing well: good color, walking quickly, bowel getting active, so after some instruction on follow-up care, I was allowed to go home, 24 hrs after coming out of surgery.
Oh how thrilled I was! All I had sought was to go home ASAP. (Maxine was later to accuse me of having scammed the hospital staff into releasing me too early.) The first lesson I learned was that I had almost no energy reservoir. In a requisitioned wheelchair that seemed to take forever to arrive (I think a floor nurse finally took pity on me and rustled one up outside normal channels), I was taken to the parking garage, where Maxine pulled up with the car. Gingerly, I stood up from the wheelchair and edged sideways into the passenger seat ever so slowly, then, lifting my legs with my hands, rotated into sitting position. As soon as I was settled for the 25-minute drive home, I started to fade. I was conscious of the urine bag under my pants, strapped around my calf, but the ride was otherwise reasonably comfortable. At home, I climbed the stairs to our bedroom with minimal difficulty.
I was to spend a week at home and then go to St. Raphael’s to test whether the bladder-urethra connection had regenerated enough to allow removal of the catheter. (During surgery, the urethra gets cut, then sewn back to the bladder; until the splice heals completely, you need the catheter to carry urine out of your body.) If not, I’d wear the catheter a second week. During that first week I experienced ongoing tension between trying to be fatalistic about the need to wear the catheter and desperately hoping it would be gone after the week.
To deal with being bedridden for an indefinite period, people had given me puzzle books and paperback thrillers that required no thought. I had also recorded on our digital video recorder a number of (a) old favorites (like “The Lady Vanishes”) and (b) crap I liked as a kid (like Abbott and Costello movies) that now, at 64, were just about the right speed for my distracted brain. I did leave within reach more serious reading, but that was wishful thinking.
During the next week, I lay in bed a great deal—less each day,—occasionally got up to walk around (I was supposed to exercise), took some phone calls (which in the first few days exhausted me within 30 seconds, though it can be hard to cut off well-wishing family and friends), tried to solve various kinds of puzzles (but found my brain not yet up to it), read a trashy thriller, watched the movies I had recorded. I was taking painkillers, one of the side effects of which was constipation, an ongoing problem in my life, now exacerbated by the gradual return to normal bowel movements. The constipation gave me strong motivation to wean myself from the painkillers.
An important note about your partner: she or he also carries a burden from the moment you learn you might have cancer. In my case, acting as a nurse was a totally new experience (other than as a parent) for Maxine, and I could not have asked for someone more supportive—though I think there were times when we both would have benefited from more honesty about her own feelings. (Though intellectually she knows better, her temperament is to discount them in such situations as though I have more right to my feelings than she does to hers.)
1. If you're the one with the prostatectomy, insist your partner carry on with life as normaly as possible, even to the extent of leaving the house at times, or to read or watch TV in another room—but in return promise not to hide any need for your partner’s care, so that he or she isn’t trying to guess when you need help. Also, encourage your partner to be honest about negative feelings—if you don’t already have this ability in your relationship, it’s past time you started.
2. Friends should understand that their kind gestures to check on how you're doing can backfire, especially if you fear insulting them by cutting them off. Try to start all conversations with, “I can only talk a short time or I’ll be exhausted.” You'll probably then find it not so hard politely to end a conversation. This is also relevant to your caretaker, who needs to conserve energy in the face of simultaneously worrying about you and running many errands for you.
3. Part of the caretaker's problem is often feeling impotent at being unable to ease your pain. It seemed to help both of us when I said to Maxine that she couldn't do anything about my pain, that it had to be my pain and not hers, and that in fact it drove me crazy (and tired me out) to have to keep answering suggestions that were really growing out of her feeling of helplessness. In fact, there was no emergency when I needed something in an instant, and other than that I could either dial her on our phone intercom or call to her if I knew she was nearby.
Here are front and side drawings of an inserted Foley catheter:
Note that the left picture illustrates a bag that can be strapped to either thigh and requires frequent emptying, as opposed to an alternative, much larger bag that needs emptying far less often but cannot be attached to the body. Since I had no interest in leaving the house (which I may have done once), I ended up mostly using the larger bag, which had a plastic hook that I could catch on a thick plastic clothes hanger and then either drape the hanger over the knob of my night table or carry it in one hand when I walked around the house.
Note also the fork at the base of the catheter. DON'T MESS WITH THE DRAIN: when you go to the doctor's office to have the catheter removed, this drain will be opened to deflate the balloon (shown within the bladder in both drawings). The other branch connects to the urine bag. In this illustration (for the attachable bag), the bag plugs directly into the catheter. The larger bag has a long tube (maybe 2-3 feet) that comes out of the bag and then attaches to the catheter. Both types of connection are quite snug; indeed, it can be awkward to remove the tube from the bag, and I learned to be careful not inadvertently to jerk the tube so that it chafed my penis.
When taking a shower, I found it helpful to detach the bag with its long tube and let any draining urine from the catheter drip into the tub while I bathed. I would drape over a doorknob the hanger that held the detached bag—and I had to remember to coil the tube so that the open end was above the urine level in the bag (or else urine would flow onto the bathroom floor). When turning off the shower, I had to remember to reattach the bag at once so that urine wouldn’t be dripping into my towel or anywhere else. Since I couldn't see well without my glasses—and since early on I had little tolerance for frustration—Maxine did this for me for the first day or two.
Getting the tip of the penis comfortable required some experimentation. At the wrong angles (which were many), I could feel it pulling, a sensation that ranged from uncomfortable to painful. But at the right angle I could even forget it was there (except to the extent that I sought rigorously to maintain that angle…). In bed I would find a comfortable position that I would then hold for a long time—probably an hour or two at times. Walking around, I learned where to hold the hanger so that the tube draped comfortably from my penis. This was made easier for me once I realized that I was most comfortable when wearing no clothing from the waist down (and having no draping upper garment that could flick the tube around). Maxine quickly became accustomed to seeing me wandering naked and carrying a hanger with a dangling plastic bag of yellow fluid.
At the top of the catheter (the part within the bladder) is a drainage hole to channel urine out of the bladder. The urine appeared to drain in a steady sporadic flow: in the external part of the tube I could see stretches of urine interrupted by stretches of air. Emptying either kind of bag requires dangling it over the toilet (you don’t have to detach the bag from the catheter) and opening a kind of stopcock at the bottom. For a couple of days or so Maxine emptied the bags; but zealous to recapture a semblance of normality, as soon as I felt steady enough, I did it myself.
Learning to sit on a toilet with the catheter was at first intimidating but easy, bemusing and disorienting (counter to lifelong training)—you guide your penis and its tubular extension out of the toilet. In the early days I lowered and raised myself very tentatively, in part fearful of bending the catheter in a way that would cause pain at the tip of my penis, in part just generally weak. Right next to the toilet we have a sink counter that I used for leverage.
For at least the first few days, I was pretty flatulent. Since releasing gas (a not infrequent need) could also release fecal matter, I had to hobble as fast as possible over and over to the toilet just in case. Often nothing happened. Despite constipation, at first I was terrified of pushing while on the toilet, and I tried to relax and let gravity do the work. But after a couple of days I began to feel safe to bear down, and that often helped. The unpleasant pressure persisted for at least a couple of more days, but by the end of the week at home, I think it was gone.
For a few days after coming home the urine bag was pink from blood mixed with the urine. Preparations for my convalescence had included buying a couple of plastic sheets maybe crib size, one of which I kept under my buttocks and thighs wherever I lay or sat to catch any blood or urine leakage that traveled on the outside surface of the catheter. I wasn’t prepared for this leakage, and when I saw pink liquid emerging from my penis around the catheter, I became alarmed. I didn’t know if there should be blood and feared it was a sign of a serious problem. I had no image of how the catheter was anchored in my bladder (only later did I learn about the water-filled “balloon” that held the catheter in), and I was terrified that a sudden movement might yank it loose. I began to freak out, which was contagious. We finally called Martin’s office and were assured that the leakage was normal. Slowly, we calmed down.
took me awhile to accept the fact of the leakage—I’m not brave, but I
learned to come to terms with much adverse, unavoidable reality. What really unnerved me
was that soon after
this I had an overwhelming urge to urinate.
Wednesday night I could hardly sleep, and we phoned
the doctor’s office
first thing Thursday. I
learned that I
was having “bladder spasms,” which the post-op information had listed
possibility but which I expected to feel like muscle spasms, not a
During that stretch of time I felt in a torture chamber, that it was all I could do not to break down and have to be put in a straitjacket or doped up: the thought of having to wait til Tuesday (at least) to remove the catheter was unbearable, and I tried to focus on getting through moment by moment. I did watch a lot of crap TV. My cousin Elena, with whom I have had contact mainly via e-mail, has had MS for decades and has had a number of related operations over the years. I had always admired her fortitude, and now I found myself thinking about her, wondering how she stood the strain, knowing that what I was enduring was trivial in comparison. Still, in the end we are each prisoners in our own skins, but while such thoughts did not diminish my own pain, I like to think they helped me manage it.
On Friday when I awoke, the pressure to urinate seemed largely gone, and I perked up a lot. Since coming home, my moods had swung up and down. But even at the worst times with the urine pressure, pain probably as bad as any I’ve endured, I firmly believed I was healing—that I was physically miserable but that that was not indicative of my body’s healing. Once the pressure went away, I became much more fatalistic about what would happen—that even if, horror of horrors, I had to go a second week with the catheter (I didn’t then know it was possible to have to go many weeks), I could manage it now.
RECOMMENDATION: Before you go home from the hospital, ask for (demand) a prescription for the drug that eases bladder spasms. Have someone leave it at your pharmacy without being filled. If you start to feel a desperate need to pee, call the doctor’s office at once (don’t suffer overnight or otherwise) to confirm that’s what is going on, and if so call your pharmacy to have the prescription filled at once. Settle in for some extended misery, but I suspect if you act promptly, you'll feel better far sooner than I did.
Having had a horrible bowel preparation the entire day before surgery, I was desperate to get back to solid food. But at home my appetite varied a great deal, and I wasn’t often sure what I wanted to eat. Maxine would keep quizzing me and running errands to groceries and restaurants. I finally asked her to get a variety of things that she knew I liked (mostly relatively benign, unspicy food) so that I could take my pick at a given moment without agonizing (which is what I was doing) about what to send her out for—and without having to send her out so often.
After a few days at home I was getting stir crazy, so I put on just enough clothes to walk to the car and have Maxine drive me around a bit. I realized I was now lying in bed most of the time (other than toilet breaks and walking around the house for exercise) mainly because I was post-surgery and therefore “ill”—and I realized finally that at the very least sitting up would feel good (though it was hard to find places where I felt comfortable—a barcalounger was one good location). I also found myself getting sick of watching any TV, and sat where I couldn't see a TV but would have to read (something light—I’ve always been partial to mysteries); this was a great help.
One week in: off to test the catheter
The visit to St. Raphael's one week after surgery was nerve-wracking. My understanding was that I had a good chance of passing the catheter test (a cystogram), but also a reasonable chance of failing and having to try again in a week; and I could hardly bear the thought of retaining the catheter for that week. Before and during the procedure I asked questions and learned that for the medical people doing my test, it was highly unusual for someone to pass the first time, so my expectations (and optimism) were lowered even as I was about to undergo the procedure..
The "test" involves lying on your back on a table over which is mounted x-ray or other equipment for watching your innards. The urine bag is unplugged, and distilled water is poured into the open end of the catheter gradually to fill the bladder while medical personnel watch an image of the bladder-urethra area for leaks. As the bladder gets full, you begin to experience pain, and you're asked to let the medical folks know when it gets too bad. Since I had the notion in my head that the longer I could stand it, the more likely I was to pass the test, I bore the pain probably longer than I needed. Indeed, it may be that the medical people decided to stop adding water before I said anything; I can't remember.
No leakage was spotted between the bladder and the catheter! I was given the go-ahead to proceed to the urology office and have the catheter removed. On my way to the office, I met Maxine, and I started to cry; I think I muttered, or at least thought, “It’s over!” I must have felt that with the catheter in, my fate was still up in the air, but that now I was about to be a real human being again with a life before me. I later learned that you could go many weeks without passing the test; my friend who had the same surgery several weeks after me had to wear his catheter for six weeks. I still can't imagine how he stood it. Telling me about his experience (we have compared notes on everything—and I mean everything), he reported that the catheter became pretty gross after awhile.
At the urology office, the PA who would remove my catheter first took us to a computer to show us images of the cystogram. Then he read us the details of the pathology report. He seemed to know exactly what he was doing when he dealt with my body, including removal of staples and the catheter. He released the valve that would empty the balloon inside the bladder, then warned me I would feel some pain, and almost at once, taking a few seconds, pulled out the catheter, hand over hand. Though brief, it was painful. As I will relate, I was to have catheters a few more times in the coming months, and I learned that depending on how removal was done it could be more or less painful.
Removal of my several staples, one at a time, also hurt, and the PA was unsympathetic, comparing me unfavorably to his 10-year-old (or so) son who clearly stood his pain like a man. I didn't care about the PA's judgment other than to want a level of sympathy that would produce greater gentleness as he removed the staples. One pain-management technique I use is to shout when I feel the pain. (I have explained this in advance at times to doctors to tell them to ignore my shouts and proceed with what they're doing.) I don't think this PA appreciated my technique.
I'm not sure if it was this or a later occasion, but when the PA removed the catheter I had blood in the tip of my penis, and I tried to blot it with cotton that was at hand. I showed it to Maxine, and we both watched in some fascination as I dabbed at the blood. The PA didn't like this, either ("put it away!" was his comment, I think)--it probably looked too sexual or flamoyant, reactions that surprise me from someone supposedly well trained in and experienced with urology problems and their effects on patients.
The PA seemed to think that some of my questions were geared toward “tricking” him into giving me permission to do inappropriate things (whereas in my perhaps pedantic way I was actually trying to avoid damaging myself by being very clear about timing for what I should or shouldn't do). Perhaps my questions came across as challenging or critical of him. In any event, he went by the book and told me not to consider doing anything energetic, including being sexual, until my next appointment 4 weeks hence. When I asked what to expect in the way of erections and having sex, his main response was “no intercourse” for the same period. (I would have liked to understand, for example, whether that was because the strain of love-making is intrinsically bad for healing or because my urinary/genital system was not sufficiently fit yet for orgasm)
During the same visit to have my catheter removed, I asked the PA how long I should wait to return to normal life activities, notably tennis. He seemed appalled I asked and told me at least a month.
Once home without a catheter, both my spirits and energy lifted. After a couple of days of walking and otherwise taking it easy, I decided to experiment with energetic movement. I chose to take a quick step or two forward to see what happened. No pain. OK, I thought, I'll start jogging in a circle in the house, slowly, and if I feel even a twinge of pain, I'll stop. I started jogging. No pain. I moved faster. No pain. Soon I was running as fast as I could in a tight circle through a few rooms.
When Maxine came home later, I told her not to worry at what I was going to do, and I showed her. I think her heart had a moment of weakness, but she seemed to accept that what I was doing was not hurting me.
I phoned Dr. Martin and told him what I'd done. He said that I could return to normal activity as fast as I wanted but to listen to my body and, if I became uncomfortable, to stop.
It was probably the next day that I went to the gym for a senior basketball game. My expectation was to try a few shots, dribble a little, and likely go home. But I felt OK as I warmed up, so I started playing. I was conscious of not overdoing the energy needed, but I was able to play and half-run for some time. The following Monday I returned to tennis. That is, within two weeks of the surgery I was back to full use of my body. This may have been a little fast, but I doubt it. I tend to heal well, I had been taking care of myself, the robotic surgery was supposed to minimize time of being laid up, and while I expect some guys need a longer recovery period, the shorter period is probably not uncommon. In any event, it worked for me. I was thrilled.
Somewhere in these first couple of weeks after surgery I received a pathology report: the prostate was successfully and fully removed with no indication of cancer at the margins. As predicted, about 20% of the prostate was cancerous. I was cancer-free and needed no further treatment other than routine PSAs and checkups (every 3 months the first year, every 6 months the second, and then annually).
Urinary incontinence is quite common for awhile after catheter removal, sometimes profusely and for many weeks. Patients are coached to expect this and to take counter-measures largely by wearing absorbent pads in your underwear. Right after removal of the catheter, for at least a few days my only incontinence occurred when I sat on the toilet, a minimal inconvenience. After that, now and then I would leak a few drops of urine, most notably when I relaxed and the urine sneaked out before my muscles could adjust. I wore pads in my underwear for a week or two; one of the pre-surgery purchases was jockey briefs to hold the pads. (I normally wear boxer shorts.) But the leakage was so minimal that I soon preferred to live with it in my underwear now and again rather than steadily wear a pad; it is intriguing what we can get used to that we never imagined possible. As I had been warned, when playing tennis I occasionally had some leakage, typically when relaxing after a vigorous point. Such incontinence has continued, very rarely (once a week? once a month?), at least until the last month or so.
10 weeks after surgery, I starting having trouble urinating. The stream became weaker and weaker, until it was just a few drops. On January 3, 2007, I e-mailed Martin about the problem and he told me to see him in his office that day or the next. The next day I awoke quite uncomfortable and phoned his New Haven office. "Drink lots of water," the receptionist told me, and if I was still troubled later in the day, I should call back.
I wasn't entirely convinced that filling my bladder was such a good idea when I couldn't empty it, but I figured the receptionist must know what he was talking about. No: I could hear in his voice he was guessing, but I felt reluctant to challenge him, and I probably didn't believe I could have a genuine emergency. Whenever something has gone wrong since the surgery, I've had vague guilt that somehow it was my fault.
YANOWITZ'S (new) RULE: When in doubt, don't follow advice from a non-medical person. Ask to speak to your doctor..
But a few hours later, I had to cut short some volunteer work and dash to the urology center, near where I was volunteering. Dr. Martin tried to put a cystoscope down my urinary tract to identify (and fix) the problem, but I couldn't hold still and was in great pain. I probably had a bladder scan, which would have shown the bladder was stuffed with urine. Martin ordered an emergency procedure in the hospital. By now I was in pain similar in intensity to what I had experienced with bladder spasms a couple of days after surgery. (Drinking more water had, of course, only exacerbated my problem.)
The hospital still had to put me through all the admission procedure and precautionary testing prior to surgery. All this took time. At one point when I was getting tests in a hospital room, Maxine and the nurse running the tests got to chatting, and I managed to squeeze out, in a loud voice (thank goodness for learning to project as an actor), "No talk! Action!" They were startled, but shifted focus. Every second seemed excuricating. I had been given injections of morphine, but they didn't seem to be helping. Eventually I was taken to a hallway outside the ORs, where I had to wait for relevant medical personnel, including Martin, to gather.
While waiting, I got off my gurney and went into the bathroom, sat on the toilet, and to my surprise managed to squeeze out a few drops of urine. What a transformation! Such a tiny amount would not, I'd have thought, be able to relieve me; but it did. I wasn't even certain I still needed the surgery.
I returned to the hallway where Maxine and one doctor were waiting. At this point, I began to feel manic, asking many questions, expressing myself loudly and energetically, hardly able to stop talking. Apparently this was a reaction to the morphine. It was probably another half-hour before the simple surgical procedure took place.
I awoke with another damned catheter in me. This would stay in just four days, and I would need not pass a test prior to its removal. It was demoralizing having to return to using the catheter; on the other hand, by now it was familiar. Because I was still so close to surgery, the innards around my urethra, especially near the bladder, were hard to decipher, but Martin was hopeful he had solved the problem. (The catheter removal this time, I should note, was done by a nurse who talked me through the process, removed the catheter quickly but smoothly, not yanking at it, and, while inevitably causing me some pain, hurt me much less than the first removal.)
Dr. Martin explained that what had happened was highly unusual, occurring in maybe 1-2% of post-operative recoveries. (Such low odds would not have deterred me from having the robotic surgery.) The surgery left scar tissue at the base of my urethra. In most cases, this tissue caused no problem, but in mine, as it hardened it curled up (so to speak) and squeezed the urethra. He likened it to any scar tissue you get on your body while healing from, say, an insect bite: as healing proceeds, the scar hardens and contracts. Close to the time of falling off, it looks quite curled up, but on the surface of the body this causes no problem (unless you pick at it and re-expose the still-healing wound...).
For the next couple of weeks after the catheter was removed, I felt in fine shape. Then my stream began to diminish again. Maxine and I had booked a week at a Mexican resort for early February. We were both by now despearate for the break, and I could not bear the thought of having to cancel the trip. So like any mature person in denial, I said nothing to Maxine. Of course, while we were in Mexico I had to pee frequently and could do so only with difficulty. I learned to let gravity help, leaning over a urinal at an angle, my hands propped against the wall, so that my bladder and penis would be fairly poised above the urinal. Drops would leak down. Squeezing the muscles in the area would also elicit a few drops.
More than I, Maxine was worried and could not always relax, even though I assured her (as I believed was true) that I was going to get through the week OK and could enjoy myself other than the dashes to the men's room.
I phoned Martin, who faxed a prescription for a drug that might ease my blocked bladder. (Turned out I didn't need the script--the pharmacist just gave me what I asked for.) I don't think these pills helped. In my mind I formed a plan that in an emergency, we would contact a Miami heart surgeon with whom we had traveled in Costa Rica and ask him to arrange for a urologist and operating room while we took the next flight to Miami. This never became necessary. But Martin's office had faxed a medical excuse to show an airline if we had to make an emergency flight. We still enjoyed much of the vacation, but much less than had I been problem-free.
Back in Madison...almost. From our NYC studio apartment I made an appointment to see Martin a day after we got back. We boarded the MTA train to New Haven and were over halfway there when Maxine got a phone call from her elder daughter that Karen, her younger (and pregnant) daughter, had collapsed in the street outside her gynecologist's office, had to be rushed to Mt. Sinai (the nearest hospital) and would have emergency surgery. It was hard to tell how much blood she'd lost or what the prognosis was. Since our train was not far from where we had left our car, I got Maxine to agree to proceed to the car (instead of getting off at the next station and taking a train back to the City) as the fastest and most flexible way to manage the situation. Poor Maxine was torn between worrying whether her husband would be ok and whether her daughter would live. (She did, though she had emergency surgery.)
The next day we agreed I should return to Madison and keep my urology appointment, Dr. Martin determined that he had to repeat the original procedure but that since I WAS still squeezing out urine, it should wait a day so that I could be treated at St. Raphael's rather than the Madison office. Maxine stayed in NYC that day, Wednesday, and then came to Madison to care for me after my procedure. This must have been a terrible time for her, for many reasons. (Martin, who lives in Madison, had graciously offered to drive me to the hospital if Maxine had to stay in NYC.)
This time Martin could see the area of blockage much more clearly and thought he successfully cleared it. Again, a catheter for a few days. But within weeks, the urine stream diminished again. On March 27, I e-mailed him:
My urine stream seems to have been slowly tapering. It still has an arc and doesn't just collapse or dribble, but the arc is noticeably weaker than a few weeks ago. The need to pee comes on with some urgency.
I have been putting off writing you about this because I desperately don't want to believe I need another procedure (aka denial), and anyway it hasn't yet felt like an emergency. I pee for an extended time (which suggests the bladder is emptying fine), and I feel as though there is slight blockage--that is, instead of coming out in a relative torrent (isn't that the norm? hard to remember...) it comes out as a slow stream (and certainly slower than when I last saw you), with some pressure inside my urethra, as if the urethra is constricting the flow.
I have also in recent weeks become slightly incontinent--just a drop or two, but probably a couple of times a day on average. In the first weeks after the most recent procedure (early Feb.) I seemed to have virtually no incontinence.
Please tell me this is all normal and I shouldn't worry...
He replied that I should make an appointment for the following week. But later that day I wrote him:
In fact, the stream seems to be getting noticeably worse, so I guess I should see you. I will be going to NYC Monday afternoon and returning Tues--but Tues, as I recall, is when you do surgeries. So should I make an appointment for next Wed. morning in Madison? (I assume it's too late to see you tomorrow morning in Madison.)
So he had me come to his office in New Haven the next day. We planned a third procedure in the next few days, and Martin gave me two options for follow-up care: self-catheterization (also called "intermittent" catheterization) for 2-3 months, starting right away, or laser surgery if the blockage recurred. In fact, he gave me no choice. He sensed I would choose the seemingly easy, technological option, and he insisted I try the self-catheterization first because it was less risky.
The next procedure went fine, and once the catheter was out (a few days) I went to Martin's office so his PA could train me in self-catheterization.
Let me assure you that I never dreamed I could (or would need to) perform such a process. The idea terrified me. It turned out to be a piece of cake.
I've looked on the web for relevant information and illustrations but could find content only about self-catheterization for chronic problems in people unable to urinate. In my case, the procedure was temporary--might last three months, I was told, though I actually finished in less time--and was just once a day rather than frequently through the day. I was working not against blockage (I could urinate fine after the third surgical procedure) but rather to "train" the scar tissue to stay in place and not curl up again. I would do the self-catheterization once every morning for several weeks, then every other day, eventually once a week, and then not at all.
Spoiler alert: this worked. Within two months or a little more, I stopped self-catheterizing, and I have had no problem since (more than a year).
Keeping in mind that the following semi-random web discussions are not entirely relevant to my experience, you might find them useful--though again, it is highly unlikely that anyone reading about my experience will ever have the bladder blockage I did.
An animated sequence of one self-catheterizing procedure, not quite the same as mine but close
Drawing of inserted catheter
Generic procedure for both men and women
A 3-page 1992 article on the procedure
Here's what I can remember a year later of what I did. Martin's PA trained me at the office with Maxine watching. A catheter is a couple of feet long, with a hole at one end (to receive draining urine) and an outlet at the other end. There are various thicknesses; you get the one that is slightly thinner than your urethra. Bought in bulk (say, 50 at a time), they cost roughly $1 each if you search around the web a bit (your urologist or his or her assistant can likely recommend a site). While you can clean and re-use these, it is inadvisable unless cost is important to you: you raise the risk of getting a urinary tract infection. Here's a photo of one (color and exact shape vary among manufacturers, as does price):
A PA trained me in Martin's Madison office, and he was great--patient and encouraging. Here's what you do (all in your bathroom):
The very first time I did this, guided by the PA, I was terrified of hurting myself. I edged the catheter in what seemed a nanometer a second. It may have taken me 10 minutes to reach the sphincter. The PA was totally patient, but Maxine started making fun of how slowly and fearfully I was proceeding. I reminded her "my body, myself," and she was quiet.
When I reached the sphincter, I didn't understand exactly what would happen. The PA was holding some kind of large cup to catch urine, but somehow I didn't control the open end (probably flopped it about in my growing anxiety as I felt the need to urinate), and the urine splashed on the floor. I felt embarrassed and apologetic, but the PA behaved coolly about the whole thing and cleaned up the small puddle.
As has been true for many new, intimidating experiences in my life, once I had moved with extreme caution the first time and had demystified the procedure, I was much more confident. I was much faster the next couple of times, at home, and soon was performing the whole insertion and removal in maybe 10 seconds or less. The preliminaries took much longer. During these ten or so weeks I had intermittent, slight incontinence.
After maybe five weeks, I shifted to catheterizing ever other day, a week or two later every 3rd day, then once a week for two or three weeks. Martin checked me with a cystoscope, and I was done. During this time, and for awhile after, I would monitor my urine stream as if I were peeing gold, and from the next room Maxine would listen to the sound of the urine hitting the water and comment as if she were a sportscaster narrating an olympic event.
How many readers have skipped all the forgoing and jumped here? I probably would have. Impotence (more politely known as erectile dysfunction) is a real but not inevitable and not untreatable consequence of many prostatectomies, and I am still dealing with it as I write almost two years after surgery. But I have had considerable improvement. I knew nothing about the problem until I had to face it, and I have found other men quite fascinated to learn about it; so I'm going to describe my experience here frankly and in detail.
Here's a book I encountered only recently but wish I had known about early on: Ralph and Barbara Alterowitz, Intimacy with Impotence: The Couple’s Guide to Better Sex after Prostate Disease,Da Capo Press, Cambrige, MA, 2004. www.dacapopress.com; ISBN 0-7382-0789-6; Library of Congress call number RC889.A459 2004. (Two of many locations to buy: Amazon.com, Buy.com)
Two physiological factors affect erections: muscles and nerves. (The third key factor, as we all learn over a lifetime of being sexually active, is psychology.) The prostate is close to and enmeshed with many relevant nerves. There is much talk these days of nerve-sparing surgery, and as I mentioned earlier Dr. Martin thought he had avoided key nerves. But I also understand that no surgeon can be absolutely certain which nerves were or weren't affected. The nerves can regenerate over time, but apparently quite slowly. Erection muscles, on the other hand, when not used for an extended time, can atrophy, so that at some point stimulating erections by some means becomes important, preferably to reduce the chance of such atrophy, but in the worst case to exercise the muscles and return them to normality. All men normally get several erections while asleep; this stops with impotence, and so exacerbates the potential for atrophy.
I have heard varying statistics about impotence after prostatectomies, and I suspect they were driven by what the predictors had seen in their practices. My surgeon and internist both thought that a year was likely to be the outside limit for returning to erections at least through pills (viagra, levitra, /cialis), though in rare cases this might extend to two years. A return to natural erections was supposedly 40% or so; with pills another 50%. The specialist I eventually saw had less optimistic results, and I suspect this is because by the time patients see him, they have already had an extended problem; his take was that the typical man would respond to pills, but not until the two-year mark
For some months after surgery, it is unlikely you'll get even a hint of an erection, though you'll likely be able to be erotically aroused and achieve orgasm (admittedly with considerable effort). In my case, I did have orgasms from time to time, but the whole experience became alienating. My wife and I both had feelings of hesitation, inadequacy, guilt--you name the dysfunctional emotion, we had it. We would feel reluctant to try being sexual, nervous and self-conscious during any such effort, and rushed if we had any indication that I might be getting an erection. All this uneasiness only helped create a self-fulfilling prophecy.
The good news is that in the previous 11 years of our relationship, she and I had worked hard at talking out any problems between us, a skill often vital to overcome clashes between us, but no more vital than now, when we weren't clashing but were behaving dysfunctionally around our sexuality. I have been profoundly grateful for having a partner who has been supportive, understanding and validating--sometimes too much so: as she and I have discussed, she mustn't put her energy into taking care of me (a general and almost always bad habit), but into both trusting me to take care of myself and being honest, with herself as well as me, about her feelings.
CRUCIAL: If you have an intimate relationship, view any impotence as a problem of BOTH partners; you both, after all, have a vested interest in your sexual relationship, which in turn is important to the intimacy in the rest of your relationship. Talk about it and your feelings openly and frankly. BOTH partners need to be honest about their feelings and not yield to (natural) embarrassment or fear of upsetting the other partner.
If you have trouble talking about such a delicate and often embarrassing subject, see a couples counselor or therapist who specializes in impotence issues. NOT TALKING will inevitably exacerbate the problem and intensify alienation between the two of you. (If you already have serious relationship problems and don't already have a couples counselor, I suspect it will now become especially crucial that you find one.)
During the second half-year after my surgery, I think I had very slight erections when I took pills, but nothing useful, and by the one-year mark I seemed nowhere close to recovery. At this point Dr. Martin and I agreed that further steps were needed, and I ended up seeing two specialists in the field. Martin thought that the extended problem with my bladder blockage may have traumatized the erection muscles, but the specialists were sceptical whether that experience mattered.
To put it mildly, I was very unhappy with the first specialist, whom I shall call Dr. X out of deference to my own inability to be detached about this experience. On my side, I will note that my wife, who has no problem criticizing me when she thinks I'm wrong, felt similarly to me about him.
Here are the alternative treatments, aside from pills, of which I'm aware: self-injection into the penis of erection-stimulating drugs, a vacuum pump, and a penile implant, which is a last resort when nothing else works and which my wife and I would have considered at some indeterminate point of ongoing failure. (There's also some kind of pellet you can insert through the penis opening, but my understanding is that this option has more potential problems than the others.)
Here are some web discussions of these options (on self-injection, I found primarily specialized journal articles, which I have not included here):
Explanation of a variety of treatments, including pills, pump, injections, implants
Useful comparison of impotence pills
Penile implants (Mayo Clinic explanation)
When I arrived, with Maxine, for my first meeting with Dr. X, he hadn't read my history, but waved that aside as unimportant. (To be fair, my next specialist, for different reasons, also hadn't read my chart but didn't think that would hamper him.) He assured me he already knew what I needed. He affected joviality and openness but in fact had little patience for any questions he thought were challenging him. (I seem to have a knack for making people feel threatened when I'm just trying precisely to clarify information; it's the demand for precision, I think, that annoys people.) He went over the general issues and plan for treatment (probably informative, but I don't remember), and made an appointment with me a few days later, without Maxine.
This appointment was one of the more traumatic experiences of my life--certainly of my post-prostatectomy life. X slowly walked me through the procedure he was following, though I wasn't sure I'd remember all the steps. As he filled a special syringe (it might have been a caveract injection), he explained that depending on my response, the dosage might need to be adjusted. I stood up, bare from the waist down, and he pointed what seemed a verrrrry long needle parallel to the floor and halfway along the shaft of my penis, grabbed and stretched the tip or the penis, and quickly jammed the needle all the way through so that it came out the other side. I felt like a sausage on a barbecue spit. I think I yelped loudly and was terrified of budging. He told me to push the plunger. Truly, I tried, but all strength seemed drained from my body, and he finally did it himself. Then he withdrew the needle, handed me a gauze pad to hold firmly around where the needle penetrated, and left the room for five or more minutes.
I sat, traumatized, squeezing the gauze and near tears. I did not see how I could ever do this shot on my own. When X returned with a packet of porno photos, I had the beginnings of (for me) an unusual erection: preposterously fat and with a thick bulge, like a lion's mane, at the area where my foreskin had been attached before my bris. He left me alone again. The porno did little for me--alienating and almost clinical, especially in the atmosphere of an examining room--but I managed to produce an orgasm, albeit of little gratification. When he returned and we discussed the result, he grew impatient with my follow-up questions and reminded me that he had other patients. I suggested that if so, he should book longer appointments.
When I next visited X, he expressed regret that he had pushed me so quickly to try the injection. I told him I didn't believe I could do it myself, and he arranged for me to meet a pump salesman.X, I suspect, is the right doctor for many men, who (I gather) often don't want to go into details about their sexuality and/or who want to be told what to do. When I said to him that it would have helped me had he told me what to expect before giving me my shot, he said, "Most men don't want to know." I did not observe that "most" means "not all," and that rather than use one-size-fits-all in this context, he could ask each patient. I suspect that had I known exactly what was going to happen, I would still have been traumatized by the shot (because it was probably worse than his description would have conveyed), but not as much.
October 4, 2008It is taking me so long to publish all the details that (to make sure core information is available for readers) I'll now summarize the last year or so and fill in details later as I'm moved to do so.
Since December, 2007, I have been seeing an impotence specialist at Sloan-Kettering in New York City: John Mulhall. I have found him wonderful to work with, though the handicap of a specialist with a large practice is that I haven't gotten to talk with him directly as often as I'd like. When I do, however, he is always patient and thorough. For non-office visit care, I have dealt with a PA who is highly knowledgable in general but (a) very by-the-book with little apparent trust in any individual patient's ability to make independent decisions and (b) not always on my wavelength about answering questions.
I have been using injections of a different kind from what I experienced with X. I use a diabetes syringe, which I insert at an angle partway into my penis. With thoroughness (more than I needed, actually, but I told myself to be patient) and a model foam-rubber penis, the PA taught me how to self-inject. The experience is never pleasant, but it is minimally painful. There are three levels of potency of the drug you inject: trimix (3 chemicals), bimix (2) and papaverine (one of the 3). After twice being priapic (extended erection that requires an emergency visit for a counter-injection) on the trimix and once on the bimix (in the office), I moved to papaverine, a very weak solution. (The good news: you can't be priapic unless your erection muscles are in good shape--the first question to be answered.) About 6 months ago Viagra began to work. However, since then both the papaverine and Viagra have had mixed results. This is apparently a psychological problem.Men may joke about priapism (as I have), but it is no fun and, as the impotence drug ads on TV warn, after 4 hours it can be dangerous. The erection becomes uncomforable, I usually couldn't urinate, and the visit to an emergency room (I went near my home in Connecticut; if I lived in NYC, I'd have gone to Mulhall's office) is a bit unnerving. Moreover, I had what may have been a near-death experience the second time. In both cases, the on-call urologist at Mulhall's office called the emergency room and smoothed the way for my treatment (you can't sit several hours in a waiting room--after 4 hours of priapism, you are at risk of permanent damage--and the antidote is not easily available); Mulhall's office gives you a card of instructions for emergency rooms because usually they aren't familiar with what needs to be done. On the first visit I was treated by a doctor who was kind of familiar with the procedure--turns out it's not an uncommon side-effect of sickle-cell anemia--and the experience was relatively benign (though it took an hour for the erection to come down; at Mulhall's office it takes 5 minutes).
The second emergency room visit was a disaster. Fortunately, before the shot I was hooked to a heart monitor, because this doctor miscalculated (though she did the calculation several times in her head) and gave me 10 times the proper dosage. The medication (neosynephine) is used to counter cardiac arrest (or maybe some less profound but very serious heart condition), and my blood pressure shot way up while my body felt severely distressed. I had to lie down and was given intravenous saline solution (I think). I give the doctor credit: she came back afterwards, having re-calculated the dosage on paper, and acknowledged that she had miscalculated the dosage; andon the card I carried from Mulhall's office she wrote a note about the correct calculation.
CRUCIAL: I made the huge mistake of not stopping her during the injection, or maybe even before. Having done this once, I knew that she should be using a small, diabetes syringe. She used a much larger one. I also knew that the previous doctor had mixed the solution in such a larger syringe and then decanted the correct dosage into the small syringe (he joked about the fact that he would NOT be using the scary-looking large syringe). And (since the previous doctor had me inject myself), I knew the shot should be relatively quick. This one took forever, and as I writhed in pain I asked whether she could do it faster. "That would be dangerous," she explained (correctly). AT THAT POINT I SHOULD HAVE HAD THE CONFIDENCE TO SAY, "STOP!!!" and then discuss the previous process with her.
YOU MUST HAVE THE ABILITY TO INTERVENE IN YOUR CARE. ASK QUESTIONS, AND IF YOU KNOW SOMETHING IS WRONG, EXPLAIN WHY.After these experiences, I returned to Mulhall's office. His PA tried the bimix, which gave me priapism at the office, and I was sent home with a papaverine prescription.
This happened in early winter, 2008. At first the papaverine worked okay. Then, under instructions to try Viagra from time to time, I found the pill working. I immediately decided to stop injections. Viagra did continue to work a few times (Cialis and Levitra had lesser effects for me; each supposedly works differently for different men, though Mulhall's experience is that Viagra works best for most men). But thenit became problematic, and when, with a sense of defeat, I returned to papaverine, it didn't do enough for me either.What does "working" mean? Erections are scaled 1 to 10 (1 worst). Right after surgery, I had 1s. As time passed, before injections, I might have moved to a 2 or 3. 6 is rated as the minimum hardness for penetration; 7-10 go up from there. I don't think the drugs have gotten me past 8 (except when I became priapic), but this was enough for reasonable gratification for both me and my wife. (Neither of us thinks the drugs have reproduced what I typically got before surgery.)
What began to happen after the papaverine worked a few times was that I would quickly lose whatever erection I had, and sometimes wouldn't even get to a 6. But after orgasm I might move to an 8 or even 9. The problem, Mulhall says, is adrenaline, which counteracts the medications. And the more nervous and self-conscious I get (so does my wife: we feed off each other), the more adrenaline gets flowing. This becomes a vicious circle.
When I returned to papaverine after Viagra and I continued to get inadequate erections, my wife and I thought that perhaps the solution was out of date. On a return visit to Mulhall's office a month or so ago, a new problem was detected: Peyronie's disease.
November 18, 2008: Prostate cancer support group
I would have loved to find a useful support group, but when I tried one (at New Haven Hospital) sometime in my 2nd year post-surgery, I found myself in significantly better shape than the five other men in the group; of course, this may not be true for all such groups. In this particular case, though, everyone was in such bad shape that when I said I was there to talk about my impotence issues and that in all other ways I was healthy, it was hard for anyone else to feel sympathetic or supportive: at least a couple of men were wearing diapers for the rest of their lives because of incontinence, another would be dead with a year, and a couple of others had been struggling for years with significant post-surgery side-effects. Indeed, when I said that in the worst case I'd have to get an erection implant, at least one reaction was an excited, "Well there you go! That's your solution!" They all would have been happy to change places with me.
I understood what was happening and didn't feel hurt--rather felt a bit of a fraud to be there (intellectually, I knew better), and wishing them well, told them I would not return. (I cited a favorite saying of my father's: "I wept because I had no shoes until I met a man who had no feet." (I don't know the source, but it sounds like something that would have arisen in the Great Depression.)
Despite my experience, I would urge other men to try out such support groups before writing them off.
November 12, 2008I had my 2nd-surgery-anniversary meeting today with Martin; my PSA is still undetectable, and I won't see him for another year. He still thinks the self-catheterization contributed to my impotence problems--and what he explained today makes sense: the point at which I had scar tissue is where my urethra was severed and then re-stitched to the bladder. Around that area, close or clinging to it, are erectile nerves. With frequent catheterization, the whole area kept being disturbed, and the nerves were plausibly, if not definitively, repeatedly traumatized.
I will be getting a testosterone-level check. Low testosterone can cause or contribute to a number of problems, including impotence (and such things as sleep difficulty, memory loss, depression...). There is some risk in having testosterone therapy, but thinking over the last 20 years has tended to minimize that risk; the concern is that testosterone may contribute to development or acceleration of prostate cancer; this is why an extreme treatment is chemical castration--and not too many decades back was literal castration. For a recent article on this subject, see http://www.newscientist.com/article/mg20026803.800-menopausal-men-could-get-sexual-boost-from-hrt.html.
In recent days I have had the following thought vis-a-vis post-prostatectomy erection issues: It may be that what is an acceptable erection (say a 7 or 8) to some urologists is less acceptable to patients. If so, my expectations of returning to full erectile functioning post-prostatectomy were unrealistic. On the other hand, my slow but relatively steady improvement may still bode well for the future.
Peyronie's is scarring inside the penis. Named after a 17th-century French physician, it's exact cause is unknown, but Mulhall finds correlation with post-radical prostatectomies. It can cause bad pain for awhile (at least several months) and curvature of erections that can get so severe that intercourse is impossible and surgical repair is needed.In my case, I've had no pain (and, he tells me, am unlikely to have it--it normally appears right away), and I have no unusual erection curvature (though this could happen). My wife and I think that girth of the erection is less than pre-surgery, and I may have slight shortening (both common results of Peyronie's). An ultrasound of my erection was done and showed no special problems (e.g., with blood flow in or out of the erection--if it leaked out, it would be a major problem).
So Mulhall continues to believe that the problem is adrenaline. My wife and I will try some exercises and we expect to visit an impotence specialist. Our problem is apparently common between prostatectomy-less men and their partners. But much as we talk about it honestly, we don't seem able to overcome the pscyhological impact. (On her side, she is not helped by being post-menopausal and taking Zoloft, which like other SRIs can damp down the libido.)
As we learn more, I'll record the information here.
Some sources on Peyronie's disease
Organization in which Mulhall participates: http://www.peyroniesassociation.org/
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