A three part personal essay
Introduction
Exactly 50 years ago in 1971, I served a one-year tour of duty in Vietnam. And now 50 years later in 2021, I am hopefully nearing the successful completion of my one-year prostate cancer tour that the VA attributes to agent orange exposure.
Was it caused by agent orange exposure? Maybe. But maybe not, it’s just as likely due to family hereditary factors, since my younger brother also had prostate cancer five years before me. That will always remain an unanswered question in my mind.
However, I had recently contacted 5 of the guys that served in the same 1/22 Infantry Company B with me. We all served in the same places at the same time under the same conditions. Out of the six of us, 3 of us have or had prostate cancer, another one had died from lymphoma (I spoke to his wife), one had a neurological disorder and one made no mention of health issues, so I guess that one guy out of six was doing ok. And I just found out that one of them now has recurrent prostate cancer, six years after surgery. Not good stats! Maybe there is something to the agent orange theory.
A study conducted by the Portland VA Medical Center and Oregon Health and Science University in 2013 looked at prostate cancer rates among veterans. They found higher rates of the deadliest, most aggressive forms of prostate cancer among those who served in Vietnam. The Portland researchers determined that Agent Orange exposure was linked to a 52 percent increase in prostate cancer risk, and a 75 percent increase in high-risk, aggressive forms of the disease.
Part One. The Decision
This story is about my cancer journey, sharing all of the intimate details, thoughts, and fears that I went through each step of the way, with the goal of helping other men who are going through it now or who may go through the same experience in the future. Since my brother contracted the disease first, I was the grateful beneficiary of his research and experience. His input and guidance were invaluable to me. I can’t express how much being able to talk to him about his cancer experience helped me. And that is why I am writing this story about my own cancer journey. Hopefully reading about my experience will help you. (Disclaimer: Neither my brother nor I are medical professionals and are not qualified to give medical advice or recommendations. Please read the full disclaimer at the end of this article.)
In early June of 2020, I went to the VA for my routine annual physical exam. My primary goal was to finally address my PTSD symptoms. I’ve had them forever, in fact, I filed a VA disability claim 10 or 12 years earlier but was denied. The VA was looking for evidence and proof that my symptoms were service-connected. I stubbornly refused treatment and refused to jump through the many hoops that the VA required for approval of the claim, therefore, the attempt failed. Later on, I came to realize that was a mistake. I learned that PTSD is treatable.
An understatement would be that the year 2020 was a rough one! There were the newly added stresses of the presidential political bullshit going on that was tearing our country apart, and the covid pandemic hitting us with the ensuing lockdowns and death and illness in the news every day. Combined with my already escalating conditions of anxiety, stress, sleeplessness, and so on… that was a difficult time. After a long conversation with the doctor, he thought it would be beneficial to send me for a PTSD evaluation and much-needed treatment. Also, as the usual routine part of the exam, he sent me to the lab for bloodwork.
A week or so later, I received two phone calls from the VA. I was expecting the first call to schedule a psychiatric mental health exam for PTSD. But the other call was a complete surprise, they wanted to schedule a urology appointment! The bloodwork showed that my PSA count was a little bit elevated to 4.3. I wasn’t too concerned though because my count had been gradually increasing over the years as I grew older. Everyone knows that older men have those kinds of changes, right? I thought that was normal and to be expected. I shrugged it off, thinking that they would just give me some kind of pill to bring the PSA down as they did with my mildly high blood pressure and elevated cholesterol. I was completely focused on getting my PTSD under control via whatever treatment was necessary.
I knew the PTSD exam wasn’t going to be easy because I had one before, but it went pretty much the way I expected it to. They ask a bunch of questions about every phase of your life’s history and all about your military experiences, and they want you to talk about things that you might not want to talk about. But I thought it went well.
However, the urology exam didn’t go as expected. They explained that my PSA took a sudden jump that warranted further investigation. My PSA was always right around or under 2.0 for many years, but then for the last 3 or 4 years it began creeping up each year to 2.7 by 2019, and then in 2020, it suddenly elevated to 4.3. And since Vietnam Vets have twice the cancer rate as non-vets and because men that have a close family history with the disease also have twice the rate of cancer occurrence, that’s a double whammy! So, they wanted me to have a biopsy done. What the??? Cancer?? Biopsy?? I wasn’t at all prepared for that added huge stressor in 2020!
Well, I was thinking to myself “No way man! I’m not going to get a biopsy based on one fluke PSA result.” So, I said to the Dr that I thought we should do another PSA test first. He replied, “No problem, we can have another PSA test done, but I still want to schedule the biopsy and if the PSA comes back normal, then we’ll cancel the biopsy.” I said, “ok, deal.” (I’m sure he somehow knew the PSA would not come back with a different result.) He then proceeded to inform me of a couple of statistics. I later learned that urologists love stats! He said that when the PSA is high, only about 25% of all biopsies come back with cancer, and only 20% of those are the bad kind of cancer. So, if you do the math, 25 out of 100 guys will have cancer and only about 5 of those 25 guys will have the bad kind of cancer. All I heard from those stats is that 75% don’t have cancer at all. The odds are in my favor. A week or so later the PSA result came back elevated, still slightly over 4, so even though I didn’t want to do it, I kept the scheduled biopsy appointment.
Man, I hate biopsies! They stick 12 big needles into the prostate, one at a time! Twelve individual jabs! I don’t really know how huge the needles were, but I assume they have to be hollow to retrieve the sample cores, so they can’t be all that thin. And guess how they access the prostate. The same way they do those digital prostate exams with their finger… through the rectum! So, therefore, the needles not only prick the prostate but also poke holes through the colon wall. Fortunately, they do numb you up first though, so It’s not really as bad as it sounds, but it is definitely an unpleasant experience. But still, I couldn’t stop thinking about the effects of 12 needle pricks into that small gland. I imagined it to be the size of a golf ball. They drew two needle samples from six different areas of the prostate, three areas on the left side, and three on the right side. All I could think about was that my small golf ball sized prostate was now swollen, bleeding, and full of holes, looking more like a whiffle ball rather than a golf ball!
By the middle of July, I received the results from both exams the same week. The first phone call was from the psychologist doctor confirming that I do indeed have service-connected PTSD. The treatment options are medication or therapy or both. That came as no surprise, I’ve known that I’ve had that affliction ever since returning home from Vietnam. But getting the VA to acknowledge it wasn’t easy.
The second call that same week came from the urologist informing me that I do indeed have prostate cancer! Originally they told me that the odds of not having cancer at all WERE in my favor but I have learned since then that the odds and stats are meaningless to the man that draws the short stick. They found cancer in two of the six areas of the prostate, both were on the right side, and five of the six areas also had high-grade pre-cancer samples. The doctor then proceeded to inform me of the good news and bad news. The good news is that I didn’t have the most aggressive high-grade cancer, but unfortunately, I didn’t have the low-grade type either. My cancer was an intermediate grade, Gleason score 7, grade/stage 2. Damn! What a double whammy week! What a year!
Well, what’s next?… My wife and I had a long conversation with the urologist. All urologists must have a degree in statistics! This percentage of the cases do this, this percentage of the cases have that, this percentage of the cases are contained, this percentage of the cases survive! Etc. etc. and on and on and my treatment options are radiation therapy, hormone therapy (chemical castration), surgery, or watchful waiting (also called active surveillance.) Chemical castration!!!
To my consternation, the Doctors would never come right out and tell me what the best treatment option was. They always said that it was up to me. Each treatment has differing side effects, it all just depends on which side effects that YOU want to live with. They were telling me that I need to make my own cancer treatment decisions! Come on Dr., please just tell me what to do and how to fix this problem!
I had already begun a casual google research for prostate cancer information before the biopsy but now the research became more intense. Plus, I had the incredible resource of well-researched first-hand knowledge from my brother who went through the exact same thing 5 years earlier. Besides determining my treatment course, I needed to decide if the VA was the best place to receive treatment. I have always carried private health insurance as a back-up to the VA just in case I ever developed some kind of serious health issue that I wanted to be treated outside of the VA. I do think this one is considered serious.
You read so much negativity about the VA health system that it makes you leery of it. But honestly, my care at the VA has always been very good. I am definitely a proponent of the VA system that I have been associated with for the last dozen years. I love the VA. After a few conversations with my brother, he stressed the importance of finding the best doctor and the best facility for treatment and care. He gave me referrals. My own research indicated the same thing. If this isn’t done right, by a highly experienced surgeon and medical team at a high-quality facility, you can end up with some long-term and possibly irreversible disastrous side effects.
One of the first things I discovered was that Vietnam Vets are 100% covered! The VA has a whole list of ailments and illnesses that they consider presumptive service-connected disabilities due to agent orange exposure. If you have one of the cancers like prostate cancer or anything else on the list, all treatments are 100% covered and you will also begin receiving some serious monthly disability payments from them. But you have to file a claim to receive the payments. The VA won’t just start sending them to you automatically. My claim was approved very quickly, in only 3 weeks. But part of that fast response was because all of my medical records were already on file with the VA.
Here is the VA list of the disabilities that are presumptive service-connected:
- Chronic B-cell leukemia
- Hodgkin’s disease
- Multiple myeloma
- Non-Hodgkin’s lymphoma
- Respiratory cancers (including lung cancer)
- Prostate cancer
- Soft tissue sarcomas (other than osteosarcoma, chondrosarcoma, Kaposi’s sarcoma, or mesothelioma)
- AL amyloidosis
- Chloracne
- Diabetes mellitus type 2
- Ischemic heart disease
- Parkinson’s disease
- Peripheral neuropathy, early-onset
- Porphyria cutanea tarda
- And a few other diseases are currently under consideration to be added to the list. (Update: bladder cancer, hypothyroidism, and parkinsonism were just added to the list in 2021.)
Veterans who served in Vietnam or served aboard ships in the open waters off the coast of Vietnam, between January 9, 1962, and May 7, 1975, are presumed to have been exposed to Agent Orange, therefore most, if not all of them qualify for fully paid treatment as well as compensation. (disclaimer: I am not a lawyer!)
Now back to the treatment options. First, I’ll discuss active surveillance (also called watchful waiting, or watch and wait). Some of the stuff I read, indicated that prostate cancer is so slow-growing that sometimes in older patients, they don’t even bother treating it, because something else age-related is likely to kill you anyhow. However, as I said, mine wasn’t the slowest growing so that kind of screws up the stats. But still, the doctor said watchful waiting was a “reasonable” option for me. And it sounded good to me. No treatment, no side effects, and IF I can get another 15 good years, I’m all in for that. Besides, I had no intention of jumping into a more radical treatment based on just one biopsy. I needed more concrete evidence regarding how bad this cancer really was. So, I chose active surveillance to begin with and would have a second dreaded biopsy in six months to see where I am at with all of this, and then annual biopsies after that. If the second biopsy showed no sign of cancer growth or spreading then I planned to continue active surveillance with biopsies once a year to monitor the cancer indefinitely. Hopefully at least for the next 15 or 20 years. My goal was to attempt to avoid or at least delay the aggressive treatments. I was thinking in terms of choosing the quality of life over quantity of life at this point. Ha! It was a good plan.
Six months later I had my second biopsy. I wasn’t as scared that time because I knew what to expect, but by that time, I had made up my mind that it was likely going to be my last biopsy anyway. With 24 punctures now through my colon wall, into the perceived swollen perforated whiffle ball prostate, that can’t be good. The second biopsy confirmed that the cancer was still in the same grade and stage. So, at least it wasn’t getting worse in that respect, but I was secretly hoping that my body was healing itself like it always has with every other illness and that the cancer was going away or at least was improving. Ha! talk about fantasy thinking! The bad news was that the second biopsy found cancer in a 3rd area of the prostate, but it was still limited to the right side of the prostate only.
After a lot more research and another conversation with the Dr, I decided that continuing active surveillance was still a good option for me. I sensed a reluctance on the Dr’s part though. But as usual, no pushback and no guidance were offered. It was still all up to me. However, I had made up my mind that I would only continue watchful waiting for one more year because I did not want another biopsy. The biopsies were causing symptoms that I never had before. In fact, I was totally symptom-free before that. I would have never even known that I had cancer if it wasn’t for the surprise annual PSA blood test results.
Later I found the doctor’s written analysis online and read the report:
“We discussed in detail that although Mr. Kuhn remains in the favorable intermediate-risk group, we NOW know that he has more areas in his prostate positive for the disease and that there is a risk of progression and developing metastatic disease.”
METASTATIC! That doesn’t sound good!
So apparently, the Dr or perhaps the head of the urology department who signs off on everything, upon further thought and review was not comfortable with my decision at the end of the consultation to continue active surveillance.
The following day, I got a surprise call from the Dr who wanted to discuss my situation again. I could tell that the Dr wanted me to reconsider my decision of continuing active surveillance. The Dr asked me why I was reluctant to begin treatment, and wanted to address my concerns and fears, while also stressing and reinforcing that this was not a low-grade cancer, but rather the intermediate grade, and there is more of it in there than they first thought. So, I was thinking to myself… Come on Doc, why not just come right out and say it: “Don’t be stupid, let’s get this problem fixed while we believe the cancer is still contained, and here’s what we should do!” I would have preferred that type of direct talk, but no, it’s still my call. However, the Dr stated a couple of times that it is a “reasonable” choice to begin treatment now. I told the Dr that I needed to give this some more thought and I’d get back to them.
I scheduled another consultation with the VA surgeons and one with the VA radiation oncologist. I also scheduled two other consultations with two different doctors outside of the VA healthcare system. Everyone seemed to agree that it was “reasonable” to begin treatment. I think “reasonable” must be a legal term and they were covering their asses. Still, no one would come right and say which course of treatment was the best for me. I got opposing views. That was so frustrating! The radiation people were proponents of radiation and the surgeons were proponents of surgery and these are the stats with each type of treatment. The pending decision was one of the hardest decisions that I have ever had to make. I kept researching and reviewing the potential side effects and flip-flopping on which way to proceed. Radiation, surgery, or do nothing? I hated the choices.
Radiation was the easiest and least invasive course to take. They zap you five days a week for four to six weeks. No incisions. No hospital stays. No downtime. After completing the course of radiation treatments, you are good to go, IF they work. The side effects were scary though. Possible radiation damage to the colon or bladder. Possible urinary incontinence or even bowel incontinence. Possible erectile dysfunction (ED.) All they could guarantee is that there would be some side effects but no one can predict which ones or how severe. Once again, they just quoted statistics. The potential colon/bowel damage was an extremely scary scenario for me. Along with the fact that if the radiation didn’t kill all of the cancer, then sorry, can’t do surgery after radiation.
The surgery option was just as scary. Multiple incisions with infection risks. Leg circulation problems developing blood clots. Potential of accidentally nicking or damaging the bowel or bladder. One or more overnight hospital stays, followed by a catheter that remained inserted for 2 weeks at home. There would positively be some degree of ED and some degree of urinary incontinence, but again no one knows for sure who will get which side effects or how bad they will be. They could be short-term or long-term, minor or severe, there was no way to predict the outcome. How can you make a correct decision with so many unknown variables? I wanted and needed the facts! But there were only statistical odds to go by. The one factor that I gave very serious consideration to is that IF the surgery fails to kill all of the cancer, I would still have the radiation option as a backup. But still…Tough decision.
I wrote this letter to my family:
D-Day
As D-Day (decision day) nears, I thought I’d send you an update and my background thoughts about the imminent decision.
So far, I have had 2 ultrasound-guided biopsies and one additional ultrasound scan for surveillance purposes. And I have communicated in one form or another with no less than 7 doctors, which include 4 different highly experienced doctors. One from our local Major Health Network, one from the University Medical Center, two from the VA, in addition to three others (residents) who are employed by the University Medical Center but affiliated with the VA.
Generally, all are in agreement that treating the cancer now is probably a better choice than continuing active surveillance (watch and wait), which was my first choice. It is no surprise to find that the surgeons are proponents of surgery and the radiation oncologists are proponents of radiation, though all agree that the final outcome (survival rate) is pretty much the same regardless of the treatment. (BTW, the prognosis in my case is very good.)
So, the basis of my decision has to be mostly about the different potential side effects and quality of life.
The surgery option is considered a major surgery (though common) that carries all of the risks of any surgery. In addition to surgery having a significant recovery period, surgery also pretty much guarantees urinary incontinence immediately and likely to continue on for 6-12 months and possibly indefinitely to one degree or another, even if it is just the minor inconvenience of stress incontinence. Not in every case of course, but in enough cases that I need to consider that as a probability rather than just a possibility.
The Non-VA Dr’s say that they tend to steer “older men” away from surgery because they don’t do as well as younger men. And believe it or not, they both said that I qualify as “older!” The VA doctors say that because I am otherwise in good health, they don’t put as much weight on the age issue.
Radiation side effects are more subtle at the beginning of treatment but can become more serious over time, with potential damage to surrounding tissue, including the bladder and rectum. The Dr’s have stated assuredly that there has been a lot of improvement over the years, even in the last 5 years, of successfully minimizing the collateral radiation damage, but obviously, there will never be zero risks. External beam radiation has improved ways of focusing in on where it needs to be. And the seed implant radiation uses mathematics and physics calculations to determine the appropriate number and radioactivity strength needed to keep the radiation contained within the prostate as much as possible, based on the size of the prostate and the size of the tumors. It’s all very complicated and though it’s not an exact science, it’s not just a trial-and-error thing or an individual Dr taking his best guess at it either.
Since I have ruled out external beam radiation, and I wanted to avoid the hormone therapy (ADT, chemical castration) if possible, I have the decision narrowed down to these two options:
Either surgery or radiation seed implants (brachytherapy without hormone therapy)
I am leaning towards and pretty sure that I will choose the radiation seed implants.
And then a couple of weeks later I wrote this:
Hi,
Today is the long-awaited D-Day (decision day). (Surgery or radiation?)
You’re probably getting tired of hearing all about this by now, but thanks for bearing with me as writing helps me to organize my thoughts.
Generally, all of the medical professionals are in agreement that treating the cancer now is probably a better choice than continuing active surveillance (watch and wait), which was and still would be my first choice, (because I feel healthy and perfectly fine), but I feel like I probably should defer to the experts at this time and go ahead with treatment.
An important and undeniable factor that I struggled with but had to consider is that in the event of treatment failure (recurrent cancer), radiation treatment is still an option after surgery, but surgery is not a good option after radiation treatment.
There is no way to know in advance which choice is the best choice or the right choice or the wrong choice. There are too many unknowns and variables that can be unique or different in each individual patient. Statistics are great for research and analysis but are meaningless to each affected individual. And when I talk with prostate cancer survivor friends, the ones who have had surgery are surgery proponents, the ones who have had radiation are radiation proponents, So, it’s a coin toss!
I’ve had 9 months now to research and think and consult and I’ve flip-flopped a lot, but now I’ve finally made a decision. It’s been one of the more difficult decisions that I’ve had to make over the years.
I decided on door #1… Surgery!
I know in the last email; I made a good case for having radiation seeds. With my Google medical degree and after as much research as I have done, I am confident that I could make a good case for either argument, (surgery or radiation). Planting the seeds and walking away would have been the easy way out. However, I decided that I may be better off, in the long run, taking the surgery route. I’ve decided to deal with the known surgery side effects rather than taking a chance on the collateral damage to my bladder and/or bowel that could result from radiation.
I spent much of the day today at the hospital. Had yet another meeting with another urology Dr. Had bloodwork done, had an EKG done, had a chest x-ray… all pre-surgery stuff.
The next 3 Thursdays will be busy. More physical exams and testing. Then a CT bone scan to make sure the cancer has not spread to my bones. And then in mid-April, I will have surgery to remove my cancerous prostate by the highly recommended and experienced University Medical Center (non-VA) surgeon. The surgery will take place at the VA hospital.
I’ll be limited to light duty around the house here for about 6 weeks after the surgery, but I think it’s all going to work out ok and I feel good about my decision.
Thanks for bearing with me as I have rambled on and on about all of this! And a special thanks to my brother for all of your feedback and informative information from your own research and first-hand experience. That was a tremendous help to me!
Part Two. The Surgery
The surgery type is called robotic assisted laparoscopic prostatectomy (RALP), also called radical prostatectomy, because they take out not only the prostate gland but also the surrounding tissue such as lymph nodes, seminal vesicles, vas deferens, and who knows what all! Pretty radical!
My greatest fear of the after-surgery was the after-effects or side effects. I knew I’d be in pain and sick from the anesthesia, just as I was in prior surgeries IF I woke up at all. Many years ago, a friend of the family went in for routine surgery and something happened with the anesthesia that caused her to go into shock and a coma and she never did wake up. Eventually, the family had to make the decision to pull the plug. I guess that was a one-in-a-million freak accident but still, ever since then, I could never get that out of my mind with any pending surgery!
The surgery was scheduled about 3 weeks out after I made the go-ahead decision. So, I took the opportunity to get things in order around the house. I did some long overdue plumbing repairs. Made sure the cars were serviced up to date, hired a lawn service for the summer. got my financial paperwork in order so that my daughter could help my wife with all of that if need be. And I made sure the beneficiaries were updated on my retirement accounts and life insurance policy. I wasn’t having fun thoughts about all of this!
The doctors pretty much guaranteed me that the side effects I should expect were urinary incontinence and ED. Guaranteed! There could be others also but the risks were low (more stats.) Regarding ED, who cares at my age? I certainly didn’t want it to happen and lose that pleasure, but oh well, if it does, I can live with that. I was told that there is a chance that the ED problem could be corrected within a year or two. Well, by then I’ll be even older, maybe too old anyhow. A fellow Viet Vet friend told me: “Welcome to the prostate club! I had it 15 years ago. Don’t wait too long to get it treated or you’ll be out of luck. Your dick probably won’t work anymore, but that’s the price we pay. Other than that, you should be fine!”
And then there was the two weeks with a catheter to think about. YUK! I could only imagine how terrible that was going to be. And then after the catheter removal, there probably wouldn’t be much of a celebration. Looking forward to wearing diapers for the next several months after the catheter removal was my worst nightmare scenario! I didn’t know how I was going to live with that. I hated the thought. The doctor assured me though that most men are dry within six months. Dry, meaning only needing one or two pads a day! And that was supposed to reassure me? And also, not to worry, if it takes a year or more to regain continence, “we can do another surgery to help with that problem.” Maybe I should have chosen radiation!
The day before surgery I wrote this letter to a friend:
Today was the perfect way to spend the day before my surgery… watching my oldest grandson (10yrs) play baseball while my youngest granddaughter, climbed up on my lap to keep her warm from the chilly morning air! My wife and I, along with my 3 daughters and 6 grandchildren were all at the doubleheader game to wish me well. It was a good day… If all goes well, I should be cancer-free by noon tomorrow (Monday), and then have a lot more good days!
I figured that would be my last opportunity to see my grandson play ball for a couple of months.
The night before surgery: I stopped consuming all food and liquids and meds as instructed, except for the PTSD med. They made a strong emphasis to be sure and take that one! DO NOT MISS A DOSE! I drank down the bowel prep stuff. It wasn’t as intense or as bad tasting as the colonoscopy stuff that I have had several times before. I showered with the antibacterial surgical soap and showed up at the VA hospital, starving, but on time the next morning at 6:00AM. My wife was with me when I checked in. She helped me with the paperwork and then they told me to wait in the waiting room but my wife was not allowed to wait with me. Due to the covid restrictions, no visitors were allowed to wait with me. So just like that, I gave her a hug and said “see ya later!” I could tell, she was devastated, near tears. She said “And that’s it? Just like that, I’m just supposed to leave you?” I told her to go home make herself some breakfast and watch some tv, relax and just wait for the call. And that is exactly what she did.
I didn’t have to wait long before the nurse called me back. The first stop was to get a nasal swab to test for covid. Next, she led me to the changing room to undress and put on a gown. Then took vitals, another nasal swab to test for MRSA, then an antibacterial mouth swabbing. A lot of prep activities went on. A lot of wires and gismo contraptions to hook up to my body. A lot of questions to answer to a lot of different medical people. Got the IV’s started. Took six different pills for something or another. Got a few shots. Put on a hair net. And before you know it, you’re ready for your 7:30 AM surgery!
When the nurse put the hair net on my head, for some reason she must have felt the need to explain to me why I was the only one wearing a yellow hair net. I was thinking to myself that only a fashion conscious woman would notice who was wearing what colors. What the hell do I care what color hair net they gave me? She proceeded to explain that patients with PTSD are the only patients to get yellow hair nets so that everyone on the staff and on the surgical team is aware that you have PTSD and to be careful with you. So much for HIPPA rules! Right? Then she started asking me serious questions like; Will you be ok when they wake you up if you don’t recognize your surroundings? Should we be on guard? Is there a chance that you may be startled and upset? Is it ok to touch you on the shoulder to wake you? Is there anywhere that you don’t like to be touched? Is there anything that we should be cautious about? She asked if I was OK. Am I agitated or irritated? WOW! I just laughed and told her to calm down, she was going to be OK and I was going to be Ok. I am not violent, and besides, (I jokingly said) I took my meds this morning, so everyone should get through this OK and have no worries. How odd is that? There I was, reassuring the nurse that she was going to be ok, before my surgery. She nodded and smiled. I thought it was funny, but I am sure the medical professionals that may have been punched in the face at one time or another by a flashback Vet didn’t think it was funny at all.
I was lying comfortably on a rolling bed that they rolled down the hallway and through the double doors into a brightly lit operating room. It was an impressive room, with a lot of impressive equipment and a lot of busy people moving around. I was really interested in seeing everything. I found it all very fascinating. I looked around and saw a HUGE strange bright shiny brand new looking machine with several arms sticking out of it that were wrapped with clear sterile plastic bags. I saw the name DaVinci on the machine and from my research, I was familiar with that name and I thought I knew what it was, but I never imagined it to be so big! Just to be sure, I turned and looked at the nurse and asked her if that was the robot? She replied, “Yes it is, and over there across the room is the computer where the surgeon sits to control the robot.” It was the most amazing machine I had ever seen. I couldn’t get over how big it was and how awesome looking it was. I felt like I was on the bridge of the starship enterprise on a star trek movie set!
The last thing I remember was someone asking me if I knew why I was there. “Yes, to have a “pros-tuh- tectomy”, I said, making sure that I pronounced it correctly. And then I continued, stating that I don’t know why you pronounce it that way, it should be prostate-ectomy. The serious Dr sort of laughed, and while he was injecting something into my IV, he said “Wow! You really have given this a lot of thought haven’t you!” The next thing I know, 4 ½ hours later, I was waking up in the recovery room.
Part Three. Post-Surgery Recovery
I opened my eyes and looked around and thought to myself “I made it!” The nurse was nearby and asked how I was doing? I replied “Glad to be awake!” She informed me that I did fine and all went well. “We are working on getting you a room upstairs.” Deep sigh of relief! She was busy monitoring all kinds of equipment while typing into the computer. I noticed the clock on the wall read 12:30 and I thought to myself “What a nap! I don’t remember a thing.” I was very very surprised but confused as to why I was laying there in that bed, completely relaxed, with no pain or nausea that I expected to feel. All I felt was a good sense of calmness and relief that it was over with. They must have given me some amazing drugs! The nurse informed me that they were trying to reach my wife but wasn’t getting an answer. I said, “Yeah, she’s probably out shopping!” The nurse laughed and said “Good for her!” I guess I laid there relaxed for an hour or so, sipped a little water or juice. I didn’t ask any questions about the surgery or the outcome of what they found or didn’t find. It didn’t matter at that point. It was done, and as they say, it is what it is. I remembered to say a prayer, thanking God. As the pain medication was wearing off, the nurse offered me more before they took me to my room. At first, I was reluctant but before long I gratefully accepted it. Eventually, the escort showed up and rolled me out of there to my room upstairs.
I got a window seat! There was another guy on the door side of the room, they rolled me past him and parked me on the window side of the room. I was happy about that. I requested some ginger ale and crackers. They brought me graham crackers. I haven’t had them since I was a kid and man were they good! Various people were in and out checking on me and all were very nice. Did I mention that I love the VA? I laid there in peaceful bliss, dozing on and off occasionally, but forced myself to stay awake so that I would be able to sleep later that night. A couple of hours later, I was sitting up in bed and my wife walked in, tepidly looking around the curtain divider to see if I was awake. She smiled and held up her hands in a motioning manner that said “what is this?” I asked what was wrong? She replied, “I didn’t expect this! You don’t look sick! You don’t look like you just had surgery! You look perfectly normal as if nothing happened!” I smiled and told her that I was feeling fine. I could see the relief on her face. We talked for a while and she asked me if the Dr was in to talk to me yet. No, not yet, and then she informed me that the Dr called her and told her that everything went well and that they did not detect any cancer outside of the prostate capsule. GREAT NEWS! So far so good, but we will have to wait for the pathology report in two weeks.
After my wife left, early that evening, I pressed the nurse call button and asked to get up out of bed and try to walk. I knew that if I wanted to be discharged the next day that I had to prove that I could get out of bed and walk. Besides, I read that was the best way to avoid deep vein thrombosis and blood clots in my legs. Which they told me I was at high risk for, “statistically.” They had some kind of pulsating leg compression sleeves on both legs that felt good massaging my legs. The nurse came in to help me up. But first, she wanted to take a look at my belly. Right away I noticed my unusually fatter than usual belly and all of the incisions on it and also saw the clear plastic catheter tube sticking out of the end of my penis for the first time and I cringed at the site…, And Wow! How did I get so fat? She told me that they pump air into your belly to blow it up to make room inside there for the operation. It will go back down eventually, but it takes a long time. Just try to pass gas when you can. I thought to myself, let’s just prick it with a pin! I looked closer at the six incisions, five little ones an inch or less and one big one about two and a half inches or so. I thought to myself that they looked like five bullet entrance wounds and one serious knife stab that were sewn up. (Actually, they were glued.)
I was moaning as it was a bit painful, but I managed with the nurse’s help to get up out of bed and was a bit shaky, but I did it and could stand! Once again, I was amazed that I did not become nauseated. After I was sure that I was not going to get light-headed, we walked across the room to the doorway and back. I did that twice! It felt good. The nurse complimented me on how well I was doing so soon after surgery. After getting back in bed, she then brought me some pain meds. A couple of hours later I summoned her again for help to go for a longer walk. She carried my urine bag as we walked the full loop around the hospital floor. That was the best walk I have ever had. I knew I was going to be ok.
I didn’t sleep at all that night. Just my luck, a loud snoring roommate. The nurse kept coming in to check on me, probably once an hour all night long. I could always hear her approaching and each time I waved at her as she peeked around the curtain to see if I was asleep. Later on, I noticed her trying to tiptoe more lightly as she came in to check to see if I was finally asleep. Each time I waved at her. I thought of joking around and telling her that I am an old jungle fighter and there is no way that you will be able to sneak up on me! This is all true, but I thought that might raise concerns again about my PTSD again, so I kept my mouth shut. The next morning (Tuesday) the Dr came in and confirmed what my wife had told me. He seemed cautiously optimistic about the cancer being contained but warned me that the pathology report in two weeks will tell the tale. He then told me that he was signing the discharge papers and that I could go home whenever I was ready to. I called my wife and she was there to pick me up by noon.
I got tired of sitting around in the hospital room, waiting for the wheelchair escort so I told my wife, “let’s go.” She said that I need to be more patient as we walked to the elevators and then pushed G for the ground floor, and walked out of the hospital to the pick-up area where my daughter was waiting in the car for us. It was a painful ride home. Every bump and bounce caused me to wince and moan. I was thinking to myself “What a wimp you are!”
The first couple of days at home were difficult. For some reason, delayed nausea set in, probably my own fault for overdoing it. And I was struggling big time with the catheter and bags. I’m sure the hospital nurse gave me instructions, but either they were half-assed partial instructions, or I didn’t completely understand them due to my pain medication head fog high. Probably a little of both. I stopped all of the narcotic/opioid pain meds immediately upon leaving the hospital though and only took extra strength Tylenol at home.
For weeks in advance, I dreaded and feared the catheter. I anticipated two weeks of hell! As I said, the first couple of days went badly. I was confused about when to wear the leg bag and when to use the larger overnight bag. The nurse told me I could use the leg bag all the time if I wanted to. I liked that idea because it was hidden under my baggy sweat pants leg, which I purchased before the surgery in preparation for this part of the journey. The smaller leg bag allowed me to be mobile. I hated feeling like I was tethered to the big bag. However, I never did get the hang of it and by Wednesday I knew something was not right. I made a phone call to the nurse and explained that I needed help with the catheter. So, she set me up with a home care nurse visit later in the week. By Thursday the catheter tube stopped flowing, probably because of the way I had the excess tubing fastened to my leg with a bungee cord that I found in my garage! I called the urology dept and they told me to get in my car immediately and go to the emergency room. Not later tonight, not tomorrow, but right now… immediately!
I was there within 30 minutes. My wife dropped me off at the door and I walked into the ER by myself. I walked up to the reception desk and the nurse asked how she could help me. I explained that the urology dept told me to report to the ER immediately. She looked at me and said, “you look fine, what’s wrong? When did you have that surgery?” Three days ago! She quickly led me back to an ER exam room. A rather tall nurse came in and asked a lot of questions and suddenly got into a controlled hyper mode, moving quickly, talking faster, and giving orders, telling me to get undressed and up on the exam table. I was moving slowly trying to avoid pain as I sat myself on the edge of the exam table, gingerly trying to lift my legs up when she sternly said “Let’s go, Move it!” and suddenly she reached one of her long strong arms under my legs and swooped them up and swung my legs around onto the table. I was moaning loudly in pain and startled about the crazy wild rough treatment that the crazy “Nurse Bruiser” had just performed. She quickly pulled my loose-fitting sweat pants down and looked at my catheter rigging and said “What the hell is this?” I tried defending myself saying that the hospital nurse…blah blah blah… “Just lay back,” she said and proceeded to remove the leg bag along with my homemade rigging and tossed it all in the trash can. She then immediately began hooking some kind of plunger device that flushed and suctioned the catheter line. She had the clog cleared in no time at all and immediately calmed down like a normal person again. “We got it!” she said. Later I learned that a clogged catheter can be extremely dangerous and even life-threatening. Not only from the risk of infection such as sepsis, especially since they determined that I already had a urinary tract infection, but also because too much of a backup pressure could have ruptured my recently sutured bladder/urethra connection! That would have been bad. I thanked Nurse Bruiser for her efficient “Man-Handling” of the emergency situation. Afterward, she sat and talked with me for a while. She was cool and I liked her. Somehow “Nurse Bruiser” morphed into “Nurse Nice.” The next day I sent a letter of commendation to the VA regarding her excellent care. Nurse Bruiser was great! No BS, no hesitation, she just quickly and efficiently did what she had to do to take care of my emergency! The VA is great!
After that episode and because of the expert catheter use and care instructions that I received from Nurse Bruiser, the next two weeks of wearing the catheter and bag went smoothly. I used the leg bag only when I wanted to be mobile and used the larger faster easier flowing night bag the rest of the time. That is not to say that it wasn’t uncomfortable and at times a mildly painful inconvenience, but it was bearable and nowhere near as bad as I had feared. On Saturday, less than one week out of surgery, I went to my grandson’s baseball game. I could have never imagined that would be possible.
It was actually two weeks and two days after surgery that I was in the doctor’s office to have the catheter removed and to receive the official pathology report. The Dr began the meeting by stating that we could not have asked for a better pathology report! No external cancer spread was found in the surrounding tissue or lymph nodes or other vesicles. Hooray! The report confirmed that most of the cancer was indeed an intermediate grade, just as they thought. However, they found bilateral cancer which meant it was not only in the right side of the prostate but there was also some additional cancer found in the left side as well that went undetected from the two biopsies. They also found a small percentage of higher-grade cancer, and there was a part of the report that stated they found nerve invasion. I was told pre-surgery that if they found cancer in the nerves, they would not try to save them. But the Dr said that was nothing to worry about now because they were able to spare the nerves and believed that the cancer was contained within the prostate. The way my brother explained it to me was that there are two nerve bundles, one on each side of the prostate, attached to the softest tissue area where it is easiest for cancer to grow and escape outside of the prostate. So, it sounds to me like the cancer would have eventually escaped and the surgery was timely in preventing that. In other words, I just got lucky! But a good friend of mine told me once that he believed that there is no such thing as luck. Everything good that happens is the result of God’s Grace. I think he’s right. God most certainly had once again been looking out for me.
Finally, it was time to get this damn catheter out! The nurse came in and said, “drop your drawers and get up on the table.” Ha! I was getting used to that order by now. She proceeded to fill my bladder with what I assumed was a saline solution. She told me to let her know when I had a really full feeling. The purpose of that was to make sure that I was able to pee naturally after the catheter was removed. After my bladder was full, she told me to stand up and handed me a plastic urinal bottle, and said get ready. She pulled the catheter out… and I stood there thinking to myself “ok this better work!” And it did, I was holding it and I didn’t pee until I relaxed and then began peeing on command. The Dr told me to try to stop the urine flow if I could. And surprise…I could! He said that’s a really good sign. I stopped and started several times and was elated because of that success. I did it!
The nurse asked me if I brought a pad with me. Yes, I did, I purchased two packages of pads and two packages of depends before the surgery. I walked out of there feeling optimistic. I wore a pad for the first time in my life and was thrilled that evening when getting ready for bed to find it was still dry. Before going to bed, I changed into a “depends” which was so weird, it reminded me of the kids’ pull-up pampers. I made it through the night, dry! I didn’t need or use any more of those leakage protections from that point on. I couldn’t believe it; I was prepared for six to twelve months of hell! From all of the guys that I spoke with who had the prostatectomy surgery and all of the doctors that I spoke with, no one ever hinted that there was a possibility of being dry from day one! Honestly, I don’t have any way of really knowing for sure, but I think that is unheard of, at least to me it was! I suppose that all of the Kegel exercises that I did may have helped. I had no idea how to do Kegel exercises, but I was told that all you have to do is, when urinating, stop and hold it then start again, then stop and hold it… do that three times every time you go to the bathroom. So, I did that daily for a month or so before surgery. That had to have helped. But, I’m sure that the expert precision surgeon skills were a HUGE part of that success as well.
From that point forward the recovery was not too bad at all. Yes, some pain and discomfort, but nothing unbearable. I could not have wished for more. As I write this story, eleven months after diagnosis and just one month post-surgery I look back and think about how fortunate I am. I’m still on light duty and still taking it easy in the recovery mode. But I am so grateful that I continue to get better and better each day.
In closing, I just want to add one more thought for the readers. If you ever have to face the prostate cancer challenge, you don’t have to do it alone. It’s ok to lean on your family and friends for help and guidance. My wife and daughters, my brother and sisters, and some friends were very helpful, supportive, and comforting. One extraordinarily supportive Vietnam Vet friend, in particular, made sure that I kept him posted with a “sitrep” every step of the way, “no less than twice a week!” Sergeant Michael ordered. Ha! What a great guy and good friend. Be open with your family and friends. It helps to talk about it and bounce your thoughts and ideas as well as your feelings and concerns off of them. It helps them too!
Good luck to you and may God’s Grace be with you.
PS: I’ll update this article two months from now after I get my first post-surgery PSA test. That will be the best indicator of whether I have any hidden residual cancer left inside my body to deal with. I am optimistic though; “the stats” are in my favor……. (to be continued.)
Continued….
Well my friends, It has been 16 months since my surgery and I’ve had 5 quarterly PSA tests. Although, I feel pretty good about where I am at, the doctors are not satisfied with the numbers. Even though they are not sure if I still have some cancer cells or not, they suggested that I may want to consider radiation treatments. However, I’ll need some more convincing positive evidence that there is residual cancer before taking that big step. So I’ve chosen to continue the quarterly PSA monitoring for now. When and if the numbers begin to increase, I’ll be taking the next treatment step, but until then, I’m back in the watch and wait mode again! To be continued……
Written by Robert Kuhn,
Author of Rucksack Grunt.
B-Co. 1/22 Infantry 1971-1972.
https://rucksackgrunt.com
Postscript
I hope you were somewhat entertained while reading my story and perhaps found something useful or helpful to your own situation. I am sure that it is painfully obvious and clear that I am not a doctor or a nurse, but still, I am compelled to add the following disclaimer.
Disclaimer: The author of this story is not a medical professional. This story is not intended as medical advice, nor diagnosis or treatment recommendations, and nothing herein should be relied upon as a substitute for professional consultation with your own qualified healthcare provider familiar with your individual medical needs.
If you enjoyed this essay, you will also enjoy Robert Kuhn’s book
Rucksack Grunt. Available here in paperback and here in Kindle eBook format.
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