Monday, April 24, 2023

My Prostate Cancer Journey - Post-op and Recovery

 I left off my last post with my radical prostatectomy surgery. I don’t mind saying that I had both dreaded the surgery and looked forward to it. I dreaded it because I don’t like unknowns or pain and surgery represented both of those. I looked forward to it because I was more afraid of the tumor in my prostate than I was of the surgery.

In the end, the surgery itself wasn’t that bad. The pain was manageable and for the most part, was what I’d call soreness rather than pain. This was partly due to drugs (better living through chemistry), but even after the anesthesia wore off, I didn’t need many of the prescription painkillers. Tylenol was usually enough.

Photo credit: National Cancer Institute/

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There were some exceptions to that. The incisions, small as they were, were across my abdomen. As a result, getting up and down was painful for a few days. Thank goodness my wife, Debi, had nursing training in her background because her assistance, especially in getting in and out of bed, was very helpful.

Coughing was also a painful activity in the days after surgery. I mentioned that I was concerned about COVID in my pre-op days, and after surgery, I was very thankful that I did not have a COVID cough to deal with.

The worst pain that I had was from the gas that the surgical team used to inflate my abdomen during the operation, however. Some of these gas bubbles remained in my body for several days and would cause painful twinges at random times. This had nothing to do with the incisions because these gas pains were mostly in my upper body and shoulders.

After surgery, the doctors wanted me up and around. The next day, nurses helped me up and had me walk around my floor a few times dragging my IV and catheter bag with me. I was pleasantly surprised at how well I got around.

And yes, I did say “catheter.” This was the first time that I’d ever had a catheter (that I can remember anyway, they may have used them in my prior surgeries while I was out). While that experience was not one that I’d want to repeat, it wasn’t as bad as you might imagine either.

To any guy, a catheter looks and sounds painful. While it was in, I really didn’t feel it though. It was annoying to walk around with (I referred to it as “my ball and chain”), but it could have been worse. I had to wear it for a week and for that time, I just stayed home and healed.

Some people wonder about sleeping with a catheter. For me it wasn’t a problem. I’d hook the bag to the side of the bed and sleep on my back. We made sure that there was plenty of slack in the tube since I’m normally a side sleeper, but in the weeks after surgery, it was uncomfortable to lie on my side.

The catheter did lead to one of the most awkward moments of the entire process when my nurse showed the my catheter to two cute young nursing students. The same students had to clean the catheter and the associated body part later. If that’s too much information for you, just imagine how I felt.

Another moment that rivaled that one was after the catheter was removed. The urologist, who was a woman, wanted to make sure that my plumbing worked before I went home, but I initially didn’t have to pee. We did that entire consultation with my pants around my ankles and me holding a urine collection device, a “jug” in layman’s terms, under Little David and trying not to show just how humiliated I felt. The urologist was a good doctor, but I did gain a new understanding of the awkwardness women feel when they are examined by a male OB/GYN.

That visit occurred a week after the surgery when Debi drove me back to the hospital. This post-op visit when the catheter was removed was when things took a bad turn.

While we were on the way to the hospital, I saw a message pop up from MyChart. If you don’t know, MyChart is a medical website where you can communicate with doctors and see information from previous visits, among other things. One of the other things is the ability to see test results.

I clicked on the message and saw the pathology report from my surgery was available. I clicked on the report.

If you have MyChart, my advice is don’t click on your lab work. In my case, I saw that the pathology indicated that cancer cells were found in one of the 10 lymph nodes that were removed during the surgery, and I had a panic attack in the middle of Atlanta morning traffic. It’s a good thing I wasn’t driving. Of course, if I’d been driving I wouldn’t have seen the message.

To make matters worse, as I mentioned before, the surgeon was on vacation since they had worked me in at close to the last minute. We were seeing one of his associates who deals primarily with rehab and recovery, so for the next week or so, I had no context for the pathology information that had been dropped on me like a bombshell.

I had believed that the cancer was caught early and that when my prostate was removed, that would be that. The bad news about the lymph node sent me into a downward spiral of fear and depression. The cancer seemed to be moving much faster than I thought and I was afraid that I’d have to have radiation or chemotherapy on top of the surgery. I was afraid that I’d be out of work long-term with the associated problems with money and insurance.

The anxiety gripped me and made it difficult to eat. I lost about 10 pounds in the next few weeks. My family and friends said that I didn’t even look like myself.

Add to that the soreness of post-catheter life. I dribbled blood for a while and tried to get used to controlling my bladder again. I don’t think my experience with this was as bad as for some men. I give my pre-op kegeling and my surgeon’s skill a lot of the credit for that.

Finally, when we were able to talk to the surgeon. He explained that the pathology wasn’t as bad as it sounded. Yes, there was cancer in the lymph node, but there was only a small trace. The amount would be too minute to show up on scans or cause problems in the near term, so no further treatment was needed at the moment. He said that it might show up in “a year or 15 years,” but that until then, the best course was to monitor my PSA level. We would treat the disease if and when it returned. My prognosis was still good.

That wasn’t exactly the news that I wanted. Like George Costanza on “Seinfeld,” I wanted the doctor to give me a “get outta here” rather than a “we’ll see.”

I didn’t get my “get outta here,” but the news that I did get wasn’t horrible. It was probably the second-best news that I could have gotten. I decided to seize on that positive attitude. I wasn’t going to die (at least not yet) and I’d probably be able to get back to life as normal after I got a PSA test in a few weeks.

I’ll insert here that it seems as if cancer news is rarely better than expected. I think this is because medical imaging lets us see most of the extent of the spread but not quite all of it. If you have cancer, guard your emotions and be prepared to hear something a little worse than expected. Don’t let it blindside you like it did me.

At that point, I began to play the waiting game. I couldn’t start the process of renewing my FAA medical certificate until I got a satisfactory result on a PSA test, but the PSA has to have time to decline. My doctor’s rule of thumb was that the PSA has a half-life of about three-to-four days. We scheduled a blood test for about eight weeks after surgery to give plenty of time for my PSA level to drop.

In the meantime, I occupied my time with walking and puttering around the house. My first days at home were filled with the Murdaugh trial and then my wife and I caught up on five seasons of “Yellowstone.” I did a lot of reading as well, and started walking our three dogs when I got strong enough.

My doctor advised me to start limited kegel exercises a month after surgery. I think both really helped with regaining bladder control. In the beginning, I’d have leakage while walking or standing up, but this became rare and gradually went away for the most part. Then it was occasional leakage when I coughed or laughed. But at least I was laughing again, and this became leakage also became more rare. The Prostate Health podcast has an excellent discussion of the biology involved in regaining bladder control.

While urinary control is being regained, it’s necessary to wear a pad in your underwear. This isn’t great, but it beats a catheter. I’ve heard that some men go through several pads a day, but from the beginning, I never really needed more than one except on rare occasions. I consider myself blessed for that. At this point, I’m still wearing pads, but I think the day is within sight that I’ll be able to leave them out.

My recommendation is that you get snug fitting underwear for use with pads. Tight-fitting briefs or boxer briefs work best. Some of the few breakthrough leaks that I’ve had were associated with my looser boxer briefs that didn’t hold the pad securely.

The other big side effect of a prostatectomy is erectile dysfunction. That’s a slower recovery, but it starts with a prescription for sildenafil, better known as Viagra, to facilitate blood flow. Surgery involves some nerve damage that takes time to heal. I intend to talk more about that in a future installment.

In many other jobs, I would have been back at work in a week or so. In more physically demanding jobs, it might have taken a month. In my own job, thanks to the bureaucratic requirements of the FAA, I whiled away almost two months waiting for my PSA test.

In fact, I only finally had my blood test last week. My primary care physician’s office administered the test locally and set up an appointment for next week to view the results. True to form, LabCorp sent me an email saying my results were available the day after the test.

Against my better judgment and despite my previous experience, I clicked to see the results. I didn’t understand about 90 percent of medical terms on the test result, but I did know how to read the PSA result that was, of course, all the way at the bottom of the page.

“PSA < .01” meant that my PSA level was undetectable. Since my PSA was undetectable that also meant that my cancer was also undetectable. It was gone, at least for the moment. [For a more detailed discussion of PSA, read my “What is Prostate Cancer?” installment.]

A huge wave of relief swept through me.

The cancer may return at some point. I’ll probably have to have regular PSA tests for the rest of my life and I’m sure I’ll be very anxious every time I do, but for now, I’m thanking God for the reprieve and anticipating a return to normal life. I plan to start the process of renewing my FAA medical this week, which may be a lengthy endeavor this time. At least, I’m getting close to ending this chapter of my life though.

The question has been asked whether I would still choose surgery if I knew then what I know now about the lymph node spread. I really don’t know.

A big part of my decision was based on the FAA’s rejection of Lupron, a drug which also has some unpleasant side effects. The economic costs of radiation and hormone therapy would have remained. If I had chosen that route, I would not be anywhere near returning to normal life.

My hope and prayer is that my cancer will not return or, if it does, that it will be far in the future. Hopefully, by the time that I have to deal with it again, there will be other, more palatable options.

I don’t know if I made the right choice on treatment and the reality is that I probably won’t know for years. For better or for worse, the decision is made. I’ll live with it and not spend time second guessing.

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