Leon's Weblog

I haven’t posted anything in a really long time. This post goes a ways towards explaining why. This is a bit of a long post. It’s also a perverse kind of “What I did during my summer vacation” essay.

Bear with me.

There’s this thing. It’s called Urinary Stricture Disease. What it amounts to, is a blockage of the urethra. It can be caused by any number of things, but the result is that urinating is difficult and an inability to completely empty the bladder leads to frequent need to urinate and a general decrease in quality of life. In extreme cases a total blockage puts the afflicted into a state known as urinary retention, where there is no passage of urine. This can be temporarily caused by an inflammation of the stricture. Causes of USD are many and varied. Everything from urinary tract infections, to physical injuries referred to as “straddle injuries” (think: lumberjack falling out of tree and catching a branch in the crotch), but the actual stricture may not occur for a long time after the inciting incident. Sometimes years.

I have a history of USD. I have no idea what the cause was. It could have been the motorcycles and/or sailboats (trapeze harnesses etc) of my youth. I remember several incidents of what I believe were urinary tract infections. In any case, for almost as long as I can remember, I have had occasional incidents of having difficulty urinating, and sudden urgent need to urinate. These did not last long. Until about a decade ago when they became more frequent and severe. I became an encyclopedia of public restrooms in NYC and had to carefully plan things like subway rides to allow the possibility of relief. I kept all of this rather quiet, as it doesn’t exactly bestow a person with a great deal of dignity. Akiko was always a sympathetic helper. She learned to read me so well that she could sometimes tell that I was in trouble before I was willing to admit it, just by looking at me.

Meanwhile I was trying to get it diagnosed. A couple of pretty severe, and completely incapacitating incidents of urinary retention lent some urgency to this, but the HMO that I was part of at the time was near useless in providing me with the medical attention that I really needed. After 3 years of ineffective diagnosis and referral, I was finally “scoped” (visual examination of the inside of the urethra, using a “urethroscope”) by a urologist. After 3 years of nonsense, it took less than 5 seconds for him to see that I had a stricture, and he advised me to have a “urethrotomy.” This is a process by which an endoscopic laser is used to essentially tunnel through the stricture and open it up. It’s an outpatient procedure, performed under the merciful blanket of general anesthesia.

So 7 years ago I had a urethrotomy. When I came around, the doctor told me that the stricture was worse than he had thought and although I had initially been told that I would have a catheter in for 3 or 4 days, he had me keep the catheter for 7 days. Once the catheter was removed, I was told that if the stricture didn’t recur within 6 months, I was probably in the clear.

Everything seemed fine.

However in the last 2 years or so, I have had some indications that I was experiencing a recurrence. Compared to what I had been dealing with before the urethrotomy, it was mild, and although I mentioned it to my GP doctor, I was still not sure that it was in fact a recurrence. However, this last spring it was becoming more and more obvious that it was coming back and that I was going to have to deal with it. I had a very busy summer planned up until about the middle of August, after which I would have some time, so my unofficial plan was to deal with it then.

The busy summer consisted of going directly from the run of American Document (with the Martha Graham Company) at the Joyce Theatre up to Saratoga Springs NY for SITI’s summer intensive. I would only do the first 3 weeks of that 4 week program because I had to go up to Juneau Alsaka where I am working on an adaptation of Lynn Schooler’s “The Blue Bear” for production at Perseverance Theatre in January of ’11. After a 10 day workshop of “The Blue Bear” I had been accepted into a program for artists by the Alaskan Forest Service called “Voices Of The Wilderness” where I was to be taken out into the wilds of the “Tracy Arms Ford Terror” wilderness area for 9 days, to help out with ranger duties and be inspired. Following this, I was going to Los Angeles to help with SITI’s summer program there and then help lead a 2 week workshop at Link’s Hall in Chicago.

Of all of these things, the 9 days in the wilderness loomed largest in my mind. It was an opportunity for a true adventure, outside the scope of the hiking and climbing that I’ve been doing in the last few years, and I was cautiously looking forward to it with an intensity that burned in my heart. Adventure!

During the three weeks in Saratoga, it was getting more and more difficult to ignore my urinary symptoms. My first night in Alaska, staying at the home of two Perseverance board members; Kate and Mike, it was very clear that I was experiencing a recurrence of USD. I had a rough night.
The next day we began work on the play, and although the symptoms abated a bit, it was becoming clear that I needed to have this checked out before I went into full retention. During my pre-urethrotomy, undiagnosed days, while working on the production of “Moby Dick” that I did in Juneau, I had gone into retention while kayaking on a day off. This was quite miserable, and I ended up leaning heavily on my friend Andrew who was with me and drove me back to my hotel.

The thought of going through this again, while in a kayak (a primary conveyance for the Voices Of The Wilderness expedition) was enough to lead me to seek out a urologist to try and address this before I headed out. My honest hope, which I voiced as a joke, was that medical advances had led to there being a pill I could take that would clear it up. My friend, and Perseverance artistic director, Art got on the case and helped me locat a urologist. This ended up being more difficult than it would seem as Juneau’s long-time specialist had recently retired, and his first replacement had even more recently quit, so there were a lot of dead-end phone numbers and mistaken identities.

On Thursday the 8th of July, I ended up in the office of Dr. Joseph Saltzman; a New Jersey transplant with a cold. He heard my story and immediately scoped me. The blockage was obvious; a wall in my urethra with a tiny pin-hole through which I had been peeing for who knows how long. He didn’t even hesitate. He said I should have another urethrotomy the next day. He said that I should not mess around with this. The retentions I had experienced in the past were extraordinarily dangerous and I was lucky to have survived them. At this point he evoked a mantra which put it all into perspective for me; “You have to pee.”

I explained to him about the Voices Of The Wilderness thing and how I only had about about a week before that and he said, that if everything went well the catheter might be able to come out in time.

So I figured; “Meh… Urethrotomy. Been there… Done that…”

When I came to at Bartlett Regional Hospital, things were different.

As part of the urethrotomy, Dr. Saltzman had tried to pass a wire through the afore mentioned pin-hole to guide the incision, but he was unable to do this. It became obvious to him that this was not a simple stricture, and that if he messed around with it, he could make it worse, so he backed off and put a “supra (or “super”) pubic catheter” in me. Also called an “SP tube” this is a catheter that drains one’s bladder through a small hole in the front of the abdomen, into a bag strapped to the leg.

Far from Been there… Done that… Now I had a tube coming out of me, midway between my navel and my junk.

I was however able to go back to the theatre that day and continue working on the play for a bit, zonked out on painkillers and the weird dream-state of being assimilated into the Borg…

In the days that followed I had x-rays and other examinations while Dr. Saltzman tried to get an idea of what my stricture was really like. All of this failed, but it was clear to him that I needed more drastic measures. He advised me to go back to New York and seek a procedure known as a “Urethroplasty”: The surgical removal of the diseased portion of the urethra and reconstruction of the urethra.

Over the course of these days it became obvious that not only was I not going out on the Voices Of The Wilderness thing, but I wasn’t going to L.A. or Chicago. I went down to the harbor and met with the two rangers that I would have been going out with: Tim and Barb. They cooked me some halibut on their sailboat and told me how they had been re-reading The Blue Bear (a popular book in Alaska) and how excited they had been to go out with me. Tim had seen the Juneau production of Moby Dick. So they told me that if there was some way I could get back up to Alaska, they would keep a slot open in their expedition that would be going out, the last 10 days of August.

With the steadfast help of SITI’s Megan, I rearranged my schedule (Barney and Ellen rearranged as well, to cover for me) and found a urologist at Columbia Presbyterian Medical Center, just down the street from my apartment.

I wasn’t in much pain, but I was seriously uncomfortable. I had a feaking SP tube in!!How do you THINK I felt? During this entire time, I was still staying in Mike and Kate’s home. They were AMAZING! They gave me the space I needed but never let me feel like I was imposing. Mike set me up with the DVDs of “ROME” which I watched from beginning to end.

In any case, I got a flight back to NYC (with a bag full of home-made smoked salmon and other goodies that Kate had put together for me) and I spent the day in the air, in my pajama pants…

A couple days after getting back, I went to see Dr. Rutman, who is somewhat famous among urologists. He looked at the data from Alaska, and listened to my story. After a brief examination he concurred that what I needed was a urethroplasty. And then he said, “There are only about 10 people in the country that you want doing this procedure. And I’m not one of them. You want someone who does a lot of these. The good news is that I know the guy you should see here in New York.” At which point he whipped out his iPhone 4, and typed out an e-mail, introducing me as “A really nice guy.” to one Dr. Rajveer Purohit. He gave me a card with Dr. Purohit’s number and told me to call him right away.

At first, Dr. Purohit’s receptionist told me it was impossible, but after some work, she opened up a hole in the schedule for the next day. So I made my way to the East Side. In the trio of Urologists who impressed me, Dr. Purohit is a stand-out. There’s only one term for him. He’s a rock-star! I have rarely felt so well taken care of or attended to.

He quickly arrived at the same conclusion as Dr. Saltzman and Dr. Rutman, but the question for Dr. Purohit was what KIND of urethroplasty. There are two basic kinds:
End to End; in which the diseased portion is removed and the two ends are sutured back together.
Graft: in which the diseased portion is removed and replaced with a graft of tissue harvested from the inside of the mouth. Yes… That’s right…

The End to End is simpler and has a slightly higher percentage of permanent success (90-95%). The Graft, which is necessary if the stricture is too long for an End to End, is more complex, requires the cutting into the cheek and has a slightly lower success rate (80-85%).
So we were back where we were in Alaska trying to get good enough imaging of my stricture to determine which way to go. Dr. Purohit found the x-rays from Alaska insufficient, so with the help of a very nice medical assistant who showed up before her shift started one morning, we re-did the x-rays, but still got nothing.

The problem was that the physical position I would be in for the procedure is so extreme (Basically I’ll be upside-down with my legs over my head. The incision being in the anterior part of the perineum.) that it isn’t good to keep me there for any longer than necessary. Also, once I’m opened and he can see which procedure to do, he doesn’t want to shift me into a position where he can harvest the cheek tissue.
The obvious solution was to take the tissue first and decide whether to use it later. At this point, I was fine with that.

So we scheduled the surgery and I went around to various doctors getting my pre-op clearances done.

The other difference between the two procedures was that whereas the Graft would require me to have a catheter in for at least 3 weeks, after an End to End, I could conceivably be back to full functioning in 10 days. This would mean I could perhaps still make the late August Voices Of The Wilderness slot.

The urothrotomy in Alaska had been on the 9th of July. On the 9th of August, I entered New York Presbyterian hospital for my urethroplasty. I would stay in the hospital that night after the procedure and possibly one more night if I needed it. I was scheduled for 1:30, but didn’t get into the OR until 4:00. The operation was to last 3 to 4 hours. The last thing I remember was chatting with Dr. Purohit about Sumo…

At what I later found out was about 11 pm that night, I came to in the recovery room. Akiko was there with the nurses. I had all kinds of tubes in my mouth. I was (as far as I could tell) fairly lucid, but Akiko seemed a bit freaked out. I wrote questions on her clipboard. She answered as best she could. I wanted to know which procedure it had been, but all she kept telling me was that Dr. Purohit had said it went well and he was pleased with the result.

What I didn’t know at the time was that my face was slathered in iodine yellow and blood. I looked MUCH worse than I felt. What I also didn’t realize, was that the operation had taken almost 7 hours. No wonder Akiko had been freaked out! She was afraid I was about to die…

At about 4 am, I had the joy of having the breathing tube and whatever else they had in my mouth removed, while conscious. Because of the incision in my mouth, they had to keep suctioning out my mouth as they did it, and it was basically an exercise in choking…

Despite the fact that I now had three holes in me that were healing, I had very little pain. True I was on some pain killers, but most of the pain was in my hip joints. The problem was that most of the people in the recovery room were still out, so there was no attempt to keep things dark or quiet. They brought me some ear-plugs and a face mask so I could sleep.

Somehow Megan got into the recovery room the next morning to check on me. She kept me company until Akiko showed up.

I was supposed to be moved to my own room at about 10:30, but they decided that because I had come into the recovery room intubated (festooned with breathing tube etc) and the extreme length of time I was in “the position” they wanted me to be in a “step down” unit where they could keep a closer eye on me. Of course there were no beds immediately available in the step-down unit, so I had to wait in the recovery room most of that day.

Finally they changed their minds and put me in a room on a regular recovery floor. It was becoming clear that I wasn’t going home that day.
What ended up happening was that my blood tests kept returning data that caused a laundry list of possible concerns. I say possible concerns because they were all things that had good explanations (being held upside down for 7 hours, side effects of antibiotics etc) but they wanted to see the numbers stabilize before they would release me. At one point I had, what looked like the elder statesman of hematology at NY Presbyterian, and his retinue of aides and students come in and hold court.

Amy Healy, a friend who is a nurse in a different department of the same hospital, stopped by with baby Fin strapped to her, and a bag full of boredom cures. She knew enough to know that boredom is a problem in that situation. There was a TV in the room but I quickly learned how my DVD collection, Apple TV and Roku box (Netflix streaming on my TV) have totally spoiled me. Broadcast television (even cable) sucks! I am so used to being able to see what I see when I want to see it, even on airplanes now, that this was weird and intolerable. So I didn’t watch very much. This may mean nothing to a lot of people but, the Farmville app on my iPhone did some good. In fact this whole mess has led to an uptick in my Farmville activity… Something that might be of the past…

Meanwhile I was taking long walks in the hallway past the “Walk your way to recovery!” encouragement signs. I was fighting the temptation to change them to say: “Get off your ass or die!” All in all, I was beginning to feel pretty good. Increasingly the nurses couldn’t understand why they weren’t releasing me. After a couple of false alarms (literally being released, only to have a nurse rush in and say that there was a call and they wanted to keep me longer) I was finally let go on Thursday evening after 3 times the expected hospital time.

Dr. Purohit told me I would need to keep the catheter for at least 3 weeks (big surprise). I got a new antibiotic prescription and was told to not lift anything over 5 pounds. So Voices of the Wilderness was basically out. I was looking forward to some more quiet weeks at home… little did I know.

I had been on a string of antibiotics since Alaska. Everything from Cipro on down. They don’t usually affect me very much. But the one that I was put on after getting home was like a steam-roller. The first two possible side-effects listed in the Nitrofuran Monohyd Macro literature were “Headaches and Nausea.” I got both. And bad. It completely knocked me out. These physical effects triggered an emotional/psychological one as well. I was EXHAUSTED spiritually. I had been working hard to keep my spirits up. Now I was home and I felt like CRAP and I had three more weeks of catheter management bullshit!!

Those first few days home were really in many ways the low point of the entire process. It didn’t help that I never expected this part to be so hard…

Since then it’s been a slow climb back. Every day has been a bit better. Aside from the catheter and all it’s needs, the main thing is the fact that I’ve spent almost two months doing very little physically.

Catheter management comes down to a twice a day process of switching between the large “night bag” which hangs off the side of the bed as I sleep and the smaller “leg bag” which I walk around with. After about a week and a half, I started to have problems because the juncture where the catheter itself connects up to the bags, became lose. It would pop out at… I was about to say “inopportune moments”, but then it occurred to me that there really isn’t an opportune moment for this kind of thing. So I got really good at taping it together. It was still iffy, so I developed a walk that would decrease stress on the juncture. Essentially it’s a walk that maintains the angle of the right ball joint. It meant that I would walk really slowly. At one point, Akiko suggested that I would look less like an old man if I made it symmetrical and did it on both sides, but then I looked like I was acting in a Noh play so… old man it was…

Well… On Thursday the 2nd of September, 56 days after the procedure in Alaska, the catheter was removed. Tests showed that my urinary performance is now above average. Dr. Purohit is very pleased. I’m cautiously happy.

The thing is that what I was most looking forward to this summer, was adventure. And I certainly got one. Not the one I wanted or was looking for. But that’s the true, deep nature of adventure. If it’s what you expected, it’s not really adventure.

Tim and Barb of the Alaska Forest Service have to go out for one more trip this fall. It’s not one that they usually bring people along on because it’s focused on breaking down their main camp and pulling stuff out, but they’ve invited me along, saying that my presence will give them the excuse to do some fun stuff too. So I’m heading back up to Alaska next week…

We’ll see what happens this time!

Adventure!!!