It was supposed to be a follow-up on a precautionary biopsy, and I wasn’t particularly concerned about the results. Prostate cancer runs in my family, which was the only reason they even did the biopsy at all, but no one who had it, had to treat it. I thought, worst case, I would be the same, and best case they would say it’s just benign enlargement. So when the first words out of my urologist’s mouth were, “I’m so sorry,” it was a gut punch. When he followed up with telling me not only did I have cancer, but it was moderately aggressive and I had no option but to treat it, that marked the beginning of a whole new life for me, and not one that I wanted.
Everyone knows cancer is a terrible disease, and everyone knows some of treatments can be horrific in and of themselves. Everyone is sympathetic. But unless you’ve had the diagnosis yourself, you have no idea what an emotional impact it’s going to have on you. I’m sure any serious disease has the same effect, but you start thinking of your life as in two segments: before the diagnosis, and after. Before the diagnosis you were a different person, one you can never get back. Let me tell you, it’s staggering. Prostate cancer is very treatable, and only rarely fatal, and at no point have I been concerned for my life, but that changes little. There is always this measure of uncertainty. I think if I was told, “you have a year to live, arrange your affairs,” it might be easier to deal with. Of course, I didn’t get that kind of news, so I don’t really know, but that’s the realm my emotions have been exploring. There is also the factor of slowness in prostate cancer, which lends a whole other level of uncertainty. My father never treated his, and neither did my oldest brother. They both died of other causes before the cancer was even a factor. But mine was more aggressive. My PSA almost doubled in a year; I went from no cancer to a Gleason 7 in a year. For prostate cancer, that’s quick. Still, if I was the type of person who said I would do nothing, I still probably had a few years before it would catch up to me. But the thing is, you don’t really know. It’s like Death is around the corner, leering at you, and you never know if it’s just going to hang there and threaten, or if it’s going to pounce. My wife’s grandfather had prostate cancer, had it treated and was thought to be fine, but it came back a year or two later, and killed him. So, the bottom line is, nothing is certain. Your doctors will promise nothing, only advise you of possibilities.
Which leads to another observation: you are pretty much on your own deciding what to do. I was given options by my urologist, and he told me to think about it for a week maybe, then tell him how I wanted to proceed. That was right before Christmas (which made for an unusual holiday). Almost everyone in the medical field, including my urologist, told me the best choice in my circumstance was to have a prostatecomy. But friends and acquaintances, that was another story. I knew one guy who had one and said it was the best decision he ever made in his life. I had another, who I never even told directly, call me up out of the blue an admonish me not to do it – I’d be wearing a diaper the rest of my life, and would never be able to “get it up” again. Another quietly (so quietly, it was obvious he knew more than he was saying) told me it wasn’t going to be any fun, but I’d be glad I did it in the end. Another as much as said, “why remove part of your body if there are other options?” It goes on and on, and my head was spinning after a while. So I had to calmly measure the options myself, and decide myself. I decided to have the offending gland removed.
I didn’t waste any time, I wanted to get it over with … and besides, I was getting mortally tired of needing to urinate every hour on the hour. The surgery was scheduled, and I informed my employer I’d be out for a few weeks. The day approached, and I got a call from the surgery coordinator that it would have to be postponed a few days; the assistant’s wife had a baby, and he would be out on paternity leave. This did not please me, I really wanted it over and done. It wasn’t much of a delay, just two days, but I was very upset. Then I got sick, and was terrified they would postpone it again. But the second date came up, and I was well enough in the surgeon’s opinion, so the procedure went as scheduled.
The official name for my procedure is a robotic-assisted radical prostatectomy. It’s laparoscopic in that they use a camera and small incisions, but the robot part makes it non-traditional. I’ve read it’s considered more precise, but not everyone agrees because there is still a person at the controls, and at least one article I read say that surgical centers like to say that just so they can defray the cost. None of that mattered very much to me. I liked the idea that my recovery would be smoother and easier, and that there wouldn’t be as much damage going in. So they slid me onto the operating table, which had a rather ominous seeming gel pad with a strap where they rested my head. Then the anesthesiologist did her thing, and I was out. I was told afterwards that the procedure involved pumping my abdomen full of CO2 to separate all the mushy guts and give the surgeon a clearer view and make it easier for him to leave the healthy mushy parts alone. I was strapped to the table and turned upside down at a 45 degree angle. Somewhere along the line, they inserted a catheter, and the surgeon got behind the console and cut the prostate away. I was told afterwards it went as perfectly as it could have gone. They didn’t have to mess with any of the nerves that control continence or erectile functions, and there is a good chance when my recovery is finished, I’ll be as normal and healthy as a person with no prostate can be. All great news.
But of course, there had to be a hiccup. I was advised that most likely I’d be able to go home the day after the procedure. But as soon as they wheeled me into my room, I had a problem. My roommate was a loud guy. His TV was loud, his phone was loud, and when the lights went out, he snored like a train wreck. I weaved in and out of consciousness, but I didn’t rest, and if I slept an hour total, it was a lot. I didn’t have the presence of mind to call a nurse, though they told me after I could have and they would have done something. But at the time I was too loopy, and I was thinking he was in recovery too, I wasn’t about to give him a hard time. They gave me something deep in the night which magically made every tiny bit of pain and discomfort go away – and I mean completely. It hit me like being kicked by a horse though, I had vertigo if I just turned my head. My single hour of sleep probably came right about then.
In the morning I was so nauseous I could barely move. I had no desire to eat – which was twofold actually: the swill they called food was so vile I couldn’t choke it down if I wanted to, and, I didn’t want to. I had Jello. Lunch was the same: two bites out of a sandwich and some Jello. Dinner was the same. When the doctor came by, he said I couldn’t go home in that state, not until I at least had my appetite back. I was not upset by this. That night was when the real horror began. I have a delicate stomach, I always have, since childhood. It gets upset, and I get gassy at the drop of a hat, especially if I’m hungry. So I fasted for nearly 20 hours, then couldn’t eat after. They also had pumped me up like a balloon to do the procedure, and there was residual gas in my abdominal cavity. I hadn’t slept more than 5 hours total in a 36 hour period, and was having minor convulsions from sheer fatigue. I settled in for the night, and woke up an hour later screaming.
I did not have the presence of mind to call a nurse. I didn’t know where I was, I was exhausted, and I was in so much pain I couldn’t think. Apparently, I was loud enough the nurse came running anyway, two of them in fact. I was somehow able to tell them it was my gut, which roughly felt like I had swallowed a bowling ball. They sat me up straight, jacked up my legs as much as they could, and I started belching copiously. Gas came out of both ends, not to put too fine a point on it, and satisfied, the nurse said, “that’s good, it’s coming out,” and she left to her regular duties. I don’t know how long I sat like that, the gas coming out in volume, but it was no big relief because it just kept coming, and coming, and coming. But even sitting straight up, I was so exhausted, I couldn’t stay conscious and passed out. About an hour again, and I woke, my first thought being, “what a horrible nightmare.” But I soon realized, it was no nightmare; I started belching and passing gas again. I woke into the nightmare, not out of it. This time I called the nurse, I asked her what was going on, and could she do anything to settle my stomach. She said, “let me see,” and walked away. In retrospect I realized there was no way she could do a thing without a doctor’s order, and it was 2 AM, that wan’t going to happen, but I took her at her word. I passed out again, and roughly an hour later awoke again in the same state. I hit the call button again, and this time the nurse didn’t appear, one of the aids did. I asked if anything was going to happen, and he just said, “if it’s gas, there’s nothing to do except walk it off.” He left, and I just cried.
This is another one of those things that’s impossible to understand if you haven’t been through something like it. I felt such an overwhelming horror of despair, I wished I had just decided to die of cancer. But it was too late, it was done. I let them chop me up, I let them drastically change my body, and there was no way to take it back. I was going through this no matter what. I cried a lot. It’s good my roommate had gone home and I had the room to myself. I texted my wife, and I texted my family, even knowing they would all be in bed and no one would see it until morning. I was so desperately lonely. I was in so much pain, I was feeling so hopeless. I passed out a third time, and that time I stayed out until morning. But with the emotional horror plus the pain, I can say with no equivocation, that was the absolute worst night of my life. I don’t know how anyone who is alone gets through such things. Just the thought that I had people who loved me was the only thing that kept me going at all.
That was Friday night. Saturday was nominally better, but not all that much. My appetite remained in abeyance. When the doctor swung by, he ordered some lab work and said he was holding me another night. I didn’t eat much lunch, but to my immense excitement, was able to get down 3/4 of a turkey wrap for dinner. It’s wasn’t bad either. I had turned a corner. My wife was with me all day, and some friends came by and helped me pass the time in the afternoon. My brother hung out with me in the evening. I went for little walks down the hall: little old lady steps, clinging to a wheeled IV rack. The doctor ordered something for the gas – it didn’t quite go away, but it wasn’t so excruciating. I slept. I didn’t sleep all night, but I slept. When breakfast came on Sunday morning, I ate the whole thing. My doctor came by, pulled some nasty thing out of my side that was collecting fluids, and started the discharge procedure.
As I write, I’ve been home for two days. I’m sleeping in a recliner with what I call a diaper pad and an old sheet on it; bed doesn’t seem much of an option wearing a catheter, and I don’t want to ruin my sheets or my mattress if it leaks (which, by the way, it does … not much, just a bit of a dribble from where it goes in, but enough that I don’t want to chance it). Gas has taken second place in my woes to constipation, but that’s easing up too. The catheter is not comfortable, nor is it any fun, but it’s tolerable, and most of the time, I can tune it out. I’m not on any heavy drugs, just Tylenol and Gasex. Every day, the sutures hurt less, and I can walk more, and more steadily. I have to sit on a horseshoe pillow to avoid putting weight on the surgical site, but I can sit without reclining (it’s amazing how fast that gets old). I still have a cough from the pre-surgical illness which was agony just a few days ago, but only just hurts a bit now. But most important, the despair is gone. On some level, I always knew it would, and fatigue, pain, and drugs had a strong voice in that, but it was still there, and it was horrific. Not so now.
And here’s what I have learned:
- Support from family and friends is incalculable. I cannot in any way shape, or form understate how important my wife has been to me this past week and how utterly lost I would be without her. My brothers and sister as well, and a large number of awesome friends.
- Things rarely turn out to be what you expect, and you have to be able to adjust. I anticipated soreness, discomfort from the catheter, a few bad nights, but I absolutely had no idea of the excruciating gas pain, the twitching exhaustion, and the bottomless hopeless despair of a single, utterly bad night.
- And, for that matter, for good or ill, everyone’s different. Someone else in my place might have breezed through this. Another might have even worse of a time. You can’t know. But this much is a certainty, you get through it, or you die, there are no other options in the end.