Sam Toperoff died this year, and that makes me really sad.

I never met Sam, but as all good writers do with their readers, he created a connection. I felt I knew him as a friend after reading his essay In The Land of the Very Old. There are no geographical coordinates for this strange place. It’s a state of mind Sam conjured up about aging. In this sweet piece of writing, he describes his journey from living in the “old country” to his new home in the “land of the very old.”

Last March, I posted a podcast episode recommending Sam’s essay to Camp Codger listeners. While preparing the podcast, I reached out to Sam, asking his permission to use a photo he took at his home in the French Alps, where he lived with his wife, daughter, and grandson. Sam never replied, but I assumed he would be okay with it since the episode was about Sam and his essay.

A few weeks ago, I became curious about what Sam was up to and discovered the sad news…Sam was no longer with us. It matters to me because I’m approaching “the land of the very old,” and he was a guide. I’m not at the border yet, but I can see it in the distance. Thanks to Sam’s depiction, the “land of the very old” seems like a good place. Not perfect, of course, but, as he says using a bittersweet chocolate simile for the “land of the very old,“ “the bitter is really not so terribly bitter, the sweet, when it comes, is surely a good deal sweeter than it has ever been.”

With his first essay about his new life in the “land of the very old,” Sam made a connection with thousands of readers. The response by his new friends, hundreds of who responded with emails, caused him to write a follow-up essay. In the Land of the Very Old, Part 2, which was published after his death, Sam continues his story about residing in this strange new place. And he must have been planning on keeping the conversation open since he even suggested he was getting a visa to the “land of the very, very old” as he was approaching his 91st birthday.

I was moved by Sam Toperoff’s passing because he was an inspiration. Not headline-news inspiration about a random old person doing some impossible feat for an 80-year-old. No, Sam inspired me because he continued to keep doing what he loved and did so well. At 90, he was still creating and writing, even as he was aware of the creeping limitations that make everything just a bit harder as we grow older. I continue to do this podcast at 76 because Sam is showing me the way.

Thanks, Sam. We never met, but I’ll miss you. I was looking forward to your take on your life in the Land of the Very, Very Old. I know it would have been a good read and a pretty good place to be.

Thanks for listening. I encourage you to read Sam’s essays. They’re long but worth the time. The links are below.

In the Land of the Very Old In the Land of the Very Old, Part 2

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Gary returns with an episode about receiving an insane EOB (Explanation of Benefits) from United HealthCare.

Today, it’s a rant, but I promise to make it a short tirade. The trigger? My latest EOB statement from my healthcare insurance company. To be honest, I seldom download and open these statements. I’m a big fan of Medicare and have a really good Advantage plan thanks to my late wife’s retirement program. Until this year, I have had the good fortune of being relatively healthy—no major illnesses or chronic medical issues. I typically incur few medical expenses, and it never costs me more than a small copayment for any procedure. My healthcare insurance company? UnitedHealthCare. Yes, the purported Darth Vader of the healthcare insurance evil empire.

On to my rant. So, I opened this new statement and was blown away by the year-to-date numbers it presented. The top line was enormous. My providers—the labs, imaging facilities, clinics, and doctors who delivered services—billed UnitedHealthcare over $256,000 from January to October. I know I was diagnosed and treated for prostate cancer, which isn’t cheap, but a quarter of a million dollars? I might add that I did not spend one night in a hospital or have an operation in a surgical facility. Now, the relevant numbers were the actual payments to the providers and my share of the costs. UnitedHealthCare paid a bit under $33,00, 13% of the billed amount. My out-of-pocket share was an incredibly small $521.

This begs the question about what kind of screwed-up system, knowingly and with a straight face, bills anywhere from five to eighty times the negotiated cost of a medical procedure? Every provider knew precisely what they would get paid by my Medicare insurance company before they submitted the claims. These are pre-authorized payments, yet they still billed these egregious amounts. Why did a urologist bill over $23,000 for a 15-minute, in-office procedure, knowing they would get paid $279?

As I noted, I have the good fortune to have a decent Medicare Advantage plan that pays for almost everything. My concern is for the poor patient who sees an enormous unpaid balance and wonders if they will be required to cover it. Sure, there’s a note in the EOB saying you should not be billed for the balance, followed by another notation that the patient may need to pay a copayment, coinsurance, or deductible. So, am I on the hook or not? No wonder there is so much anxiety today around medical treatment and its costs.

In my humble opinion, the medical-industrial complex of healthcare providers and insurance companies maintains this evil pricing charade to take advantage of the disadvantaged. These obscenely inflated prices are the starting point for unfortunate patients who may be underinsured or even uninsured. How many families have lost homes or gone bankrupt based on their inability to pay these fantastical prices?

Explaining the complexities of the healthcare payment system is way above my pay grade. Still, these thoroughly confusing payment practices can partially explain the anti-healthcare sentiment rampant in our country. And we haven’t even touched on the burden of self-advocacy placed on patients dealing with complex medical issues. Or the simple frustration of just trying to ask their healthcare provider a simple question. Leave a MyChart message? No response. Call the office? Listen to a long phone tree before being sent to voicemail. Leave a voicemail message? Ignored. As you can probably tell, I’ve dealt with a few challenges over the last nine months.

My tirade was triggered by a stunning Explanation of Benefits statement from UnitedHealthCa...

Gary decided his prostate cancer was not yet in the rearview mirror.

I know. I wrapped up the Prostate Papers project in the last episode. It was planned as the final episode of the series. I didn’t want to write about my prostate cancer any longer, and I’m sure you didn’t want to listen. After all, in my thinking, it was over. My cancer staging was encouraging (favorable intermediate risk), my state-of-the-art treatment was scheduled, and the long-term prognosis was excellent. I was optimistic. A couple of weeks in San Francisco for my radiation sessions, and it would be in my rearview mirror, disappearing into the past.

Well, it didn’t quite turn out that way. After returning home to Santa Fe, I debated for several weeks whether to leave the Prostate Papers project closed and on the shelf or record a new “final” episode. I’m not looking for sympathy, but I decided I wanted to be honest with my listeners, especially my new buddies in The Club, who graciously shared their prostate cancer experiences with me. So, one more chapter in the Prostate Papers, and it’s over. I think…who knows?

Anyway, what I discovered, even with all my research, is that prostate cancer lingers. It’s not “one and done” for most patients. My optimism and belief that I was in control masked the reality of most cancers. Even with successful treatment (surgery, radiation, or chemotherapy), a period of recovery can be long. And there are side effects. Boy, are there side effects!

I should have known this intimately. After all, my first wife underwent every treatment in the books for breast cancer. It was treat, recover, deal with the side effects, and then repeat. It was part of her life (our life) for seven years. I was denying reality, assuming my cancer was different.

It wasn’t. In my case, I was hit almost immediately after my last treatment with a serious, radiation-caused urinary tract obstruction. I now need to self-catheterize several times a day. It surprised me. Notwithstanding my over-the-top research, this treatment side effect never appeared on my radar. On a positive note, my radiation oncologist says it should diminish over the next few weeks or months. A couple of friends who experienced the same issue after their radiation treatment also reassured me that they recovered from this uncomfortable side effect. I’m guardedly optimistic, but patience is in order.

By the way, we haven’t even touched upon the well-known, long-term outcomes of radiation treatment for prostate cancer. These side effects can take months, even a year or longer, to show up. It’s become painfully clear to me that prostate cancer will always be part of my life.

So why am I reopening the Prostate Papers and sharing my post-treatment status? My primary motivation is an obligation I felt to guys who are dealing with their prostate cancer issues and who listened to, or might tune in to this podcast series. There are enough challenges and decisions in the diagnosis and treatment of prostate cancer that full disclosure of the potential side effects can be overlooked. It happened to me, and I did a ton of research throughout this journey. I thought I was well-informed but discovered I wasn’t. If this can help a few of my prostate cancer buddies avoid unpleasant surprises, it’s worth the effort.

So, my advice is simple. First, accept the fact that prostate cancer is now part of your life. You might be among the few lucky ones who complete their treatment with no short- or long-term side effects and never have a recurrence. That would be great but don’t assume it’s a given. Prostate cancer takes its toll on many of its victims.

Second, avoid nasty surprises by doi...

The wrap and final episode of The Prostate Papers. It's time to draw this story to a close.

Gary Ebersole here, back with the closing chapter of The Prostate Papers. You might have noticed the recent “dead air” from the Camp Codger podcast. I haven’t abandoned Camp Codger, but I couldn’t bring myself to deliver another long episode about prostate cancer. Sometimes, you can get too close to a topic, and this was one of those topics for me. Anyway, my personal experience with the scourge of prostate cancer has reached a significant juncture, and I feel a need for closure, hence this final episode of The Prostate Papers.

I went to Denver in early July for my biopsy, and the results came back a week later. To understand how I ended up 400 miles from Santa Fe, where I live, for this critical procedure, read my blog post on the biopsy dilemma. As you might expect, I hoped the pathology report would let me move into “watchful waiting” or even “active surveillance” mode. Unfortunately, the Denver urologist who performed the biopsy and did the cancer staging said that I needed treatment—surgery, radiation, or even focal therapy. He said it wasn’t urgent, but I did need to do something sooner (measured in a few months) rather than later (a year or two).

For the curious, I have chosen to undergo external beam radiation therapy using the SBRT protocol rather than have a radical prostatectomy via robotic-assisted laparoscopic surgery. What a mouthful! Anyway, the treatment will occur during the last two weeks of October in San Francisco. Yes, I’m also traveling out of state for my treatment. I explain my rationale for this decision in a blog post on CampCodger.com.

Let me leave you with a couple of closing comments. First, an important point to leave listeners with is that your level of involvement in your diagnosis and treatment is your choice. You can follow my over-the-top path and go into a research frenzy. It was perfect for a geek like me since understanding how things work matters. My immersion in the world of prostate cancer has led to the diagnostic choices I made. It also determined my treatment choice. That said, what works for me may not work for other guys. If you have an excellent urologist that you trust and a support system to give you wise counsel, the low-research approach can be the right path for you.

Second, for the guy or his family who must know as much as possible about the diagnosis and treatment of prostate cancer, do your online research, as I suggested in an earlier episode. Then check out Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. This comprehensive book loads you up with detail, often more than you want. I was well-informed when I finished reading the book.

So, it’s a wrap for The Prostate Papers. Developing these episodes has been cathartic for me, but the interaction with my new “prostate buddies” in our special club has been even more amazing. Thanks, guys. It really made a difference.

Before we go, let me reassure our listeners that I am convinced everything will turn out well. My doctors and all the data I hav...

In The Club episode of The Prostate Paper, Gary discovers new friends with a shared experience dealing with prostate cancer.

Gary Ebersole here, back with another chapter of The Prostate Papers. When I closed the last episode, I said I’d discuss the challenges of choosing the optimal diagnostic path. I had recorded and edited the episode and was about to publish it. It was at that point I decided I was feeling drained after my intense research on prostate cancer. At the same time, I was dealing with my challenges in trying to gain access to the medical system. I have a good Medicare Advantage PPO plan, yet two of the top cancer centers in the country (I’ll name names—MD Anderson and the Mayo Clinic) refused to take my insurance, which would require me to go out of network and pay out-of-pocket for charges not covered by my plan. To add to my frustration, I discovered my geographic location had a significant impact on my choices for diagnosing and treating prostate cancer.

So, I went looking for something positive from this prostate cancer experience and didn’t have to go far. I have been overwhelmed by how open men who are dealing with prostate cancer have been. Under normal circumstances, you wouldn’t expect guys to talk openly and candidly about sexual dysfunction, urinary incontinence, and even bowel problems. When all is well, we may joke about these topics but don’t talk seriously about them. That all changes when a man receives a prostate cancer diagnosis and mentions it to someone else who is dealing with the same thing. The sharing begins.

It's a club with a singular and obvious membership requirement—being treated for prostate cancer. Some men may be among the lucky who are diagnosed with indolent, slow-growing cancer and avoid treatment for now. However, even with active surveillance as the treatment, you’re still in the club. It’s a lifetime membership.

As a result of this podcast series, my Camp Codger chapter of the club already had a couple of members. The first guys in, Ron and Jimmy, were incredibly open about sharing what they had learned during their diagnosis and treatment. Several other guys among friends, acquaintances, and family had listened to the first Podcast Papers episode and surprised me by welcoming me to their club. Thanks to Kevin, Jack, Mike, Dan, and Owen for reaching out. It’s not a club I was interested in joining, but it has a great roster of members. We had some terrific conversations and email exchanges.

I also had the good fortune to meet Robert and Charlie through introductions from my friends Stewart and Peter. And Doug, a visitor to our Airbnb guest house, was a surprise club member. Over a glass of wine one afternoon, Doug mentioned that he had prostate cancer, which triggered an extended discussion about what I could expect.

I’ve really discovered the importance of community. The dialogues have been heartwarming and, at times, intense as we discussed the challenges of dealing with prostate cancer and its diagnosis and treatment. Talking about it makes a difference. A heartfelt thank you goes out to the members of my club. I am forever grateful for your support and friendship.

If you’re joining the prostate cancer club, my advice is to be open to talking with other guys. The first conversations may be a little awkward, but you’ll learn a lot, and you may make some new friends. I’m not typically a joiner, but in this case, I stepped out of my usual pattern. I’m really glad I did. Btw, ask your urologist to point you to local prostate cancer support groups. For some men, it’s an excellent way to connect with this community.

We get back on track with the next chapter of The Prostate Papers when I return to the topic of the biopsy dilemma.

In this episode, Gary enters the prostate cancer maze when his PSA test results increase rapidly.

This is Gary Ebersole. I’m back with another chapter of The Prostate Papers. In this episode, we get serious about all the decision points and choices that men must make in their journey through the “prostate zone.” As always, I remind the listener or reader that I’m not a doctor. I’m merely trying to provide a guide that might help you better understand what’s on the path ahead. These are my experiences and may not reflect your situation.

To illustrate The Prostate Papers journey, I’ll introduce a metaphor I use to describe my travels through the prostate zone to visualize what it feels like to be on this trip. I sometimes think of myself as a package going through a maze of conveyor belts and chutes in a UPS sorting facility. As you ride along, you’re confronted with a sequence of decisions, often with several options and various outcomes. Depending on your decision at any given point, a gate closes, and you are sent down a chute onto a different belt. As much as you would like to return to the beginning of your trip and find a more pleasant adventure than dealing with prostate cancer, the belt only moves forward, and the ride continues.

Let’s start with the first decision most men think they must make—should I have my PSA levels tested yearly? In truth, your first decision is often whether to submit to a digital rectal exam (or DRE) by your primary care physician during your annual physical exam. Unfortunately, the evidence supporting using a DRE to identify early-stage cancers isn’t great. If the DRE is part of your yearly exam, welcome to the prostate cancer maze and hop onto the “watchful waiting” conveyor belt. Another, possibly even earlier, access point to this conveyor belt is when patients report lower urinary tract symptoms to their doctor. Google “prostate cancer lower urinary tract symptoms” to get the long list of symptoms. You can expect a DRE and a baseline PSA test if you report any of these symptoms. You’re also on the “watchful waiting” conveyor belt.

Back to PSA testing, which is a stronger indicator of possible prostate cancer than either the DRE alone or patients reporting lower urinary tract symptoms. Confusing for both patients and doctors, there is no consensus on prostate cancer screening guidelines. The American Cancer Society, the American Urological Association, the United States Preventive Services Task Force, and the National Comprehensive Cancer Network all have different (sometimes contrary) recommended guidelines. For instance, the USPSTF, a government-funded nonprofit organization, recommends against PSA testing for men over 70 (I’m 75). The ACS is more nuanced and recommends continued annual screening if baseline test results reach a certain threshold. The other groups are similar. There are very good reasons for this ambiguity. The risk of overdiagnosis (and overtreatment) for prostate cancer is high. Nobody wants the prostate cancer treatment side effects if they don’t have cancer. By the same token, nobody wants an aggressive cancer to go undetected. It’s a conundrum.

As I mentioned in the first chapter of The Prostate Paper, I entered the maze voluntarily (no symptoms) and jumped onto the “active surveillance” conveyor belt four years ago at age 71. My decision was based on several factors. First, I always believe it’s better to have information on which to base rational decision-making. Ignorance is not bliss for me when it comes to my health. Second, I have always been an active participant in my healthcare decisions. I rely on the advice of medical professionals, but I’m always well-prepared...

In this episode of The Prostate Paper, Gary comes out of the prostate cancer information rabbit hole and takes stock of what he has learned.

Gary Ebersole again. I’m back with another report on my journey into the “prostate zone.” As I mentioned in the previous episode, I’m not a medical professional, and I’m not giving medical advice. My objective with these podcast episodes is to share the experience and knowledge I have gained with our listeners. Make your decisions based on your research and the advice of your medical team.

In this episode, I’ll take a break from my nonstop research and take stock of what I’ve learned. First, a personal sidebar. My journey began eight weeks ago when my second PSA test results in two months were posted to my medical portal. Damn, that was my first thought. Another big jump in two months (20%) after the 33% increase over the previous year. Not good. I had just entered the prostate zone. For me, that didn’t mean rushing to my urologist and demanding immediate treatment. I wanted more information. He ordered an MRI scan, and the intervening three weeks gave me plenty of time to understand my situation better.

My research became the catalyst for The Prostate Papers. Prostate cancer was more complex than I had thought, and perhaps what I learned over dozens of hours of online research could offer some guidance to other men entering the zone. So, here we are, eight weeks later, and I still haven’t had a prostate biopsy. What, you may say? No biopsy yet? Perhaps the best virtual advice I received during my research was listening to a YouTube video featuring Dr. Mark Scholz, a well-known medical oncologist in Los Angeles. He’s specialized in managing prostate cancer (not treating) for the past 30 years.

In this video (https://www.youtube.com/watch?v=aotF2SPzCmU), Dr. Scholz tells patients to “Go slow…do your research…talk to a lot of people …give yourself time to process the complexity of the situation”. The essence of his advice is simple—you have time. Yes, you have cancer—the big ‘C’—and that creates an incredible sense of urgency. Your first response is, “I want it out, and I want out now.” But stop, take a deep breath, do your research as Dr. Scholz says, and talk to your doctor. You’ll discover two important things. First, some forms of prostate cancer are what is called “indolent” and grow very slowly. Second, even if your cancer is considered high-grade or aggressive, it still grows slowly compared to many other cancers.

You certainly have a few weeks, even longer, before committing to a diagnostic and treatment pathway. Google the phrase “How quickly does prostate cancer spread?”. You’ll find many credible sources that support the premise you have time to understand your disease and your choices. Whatever you do, don’t choose to do nothing. That would be stupid. You wouldn’t be at this point if there weren’t some solid prostate cancer signals. Listen to what these signals tell you, and if your doctor recommends active surveillance, follow their advice for regular PSA testing and, in some cases, routine MRI testing. You are in the prostate zone. Deal with it.

Back to my biopsy status. I’m glad I took the time to research prostate biopsies. No, a prostate biopsy is just any old biopsy. There are several approaches that I plan to explore more deeply in the next episode when I take listeners into the prostate cancer maze. I’ll explain what I discovered and how it impacted my biopsy path.

In addition to the recommendation from Dr. Scholz to take the time to understand the diagnostic and...

In this episode of The Prostate Papers, Gary goes way down the prostate cancer information rabbit hole.

Welcome back to one man’s trip into the dreaded “prostate zone.” Before I start, let me remind listeners that I am NOT—repeat—NOT a doctor. I’m just a reasonably well-informed patient, and I’m sharing what I have learned in the hope that other folks entering the “prostate zone” might find it useful. Do NOT treat anything I say as medical advice.

I closed the first episode with a simple question—is there just too much online information on prostate cancer for a reasonable person to discover and process? The classic answer—and my response—is “It depends.” For almost all of us, at the outset of our research, the amount of information can seem overwhelming. Just getting started can be a challenge. Googling “prostate cancer” gives over 412 million results. But is it too much? For many men, a fair answer is “yes”. TMI. Too much information. That’s what highly skilled, experienced doctors are for. A good doctor can guide you down this path to a successful outcome. You don’t need to enroll in the Google School of Medicine to be a good patient.

Other folks eagerly head down the prostate cancer “rabbit hole.” There can never be too much information. One more query to post, one more paper to read. I’m one of them. When we “data hounds” go into our doctor’s office, we’re ready for a serious discussion, not a lecture. In my case, after a follow-up PSA test came back showing yet another significant bump in my score, my urologist recommended we proceed with diagnostic testing, beginning with an MRI scan.

In the three weeks before the test, I went down the prostate cancer information rabbit hole. Way down the rabbit hole. I spent dozens of hours clicking through long lists of Google search results. No surprise, there’s almost an endless supply of information scrolling across your screen. Equally unsurprising, the quality is all over the board. You can understand why doctors seldom look forward to seeing patients who have consulted with Dr. Google. Some may come in with a preconceived notion of their diagnosis and even have a treatment plan.

If you choose to arm yourself with information available online, let me offer some advice. First, hone your search skills. The value of the returned results depends on composing good queries and comprehending and filtering the flood of information. As you drill down, your queries should be using more specific keywords. Second, select your data sources carefully. As we all know, information on the web can range from gold to garbage. I’ll drill down on the sources in a moment. Third, check the dates of the published information. Prostate cancer diagnostic tools and treatments have made significant progress in the last ten years. There is decent quality information that is a decade old, but try to focus on research and reports from the last five years.

So, what online data sources do I think are good? Even though it’s far more challenging to process scientific research reports, they can offer some of the highest-quality data. In this project, PubMed Central from the National Institute of Health became my new best friend, but I wish I had paid more attention during my stats class in college. Processing medical research reports demands a basic understanding of statistics. And having enough information to understand the research context, its language, and its relevance is essential. It’s not always easy. That said, I read them anyway.

For most people, the best resources are medical information websites curated by large clinical and research organizations. The information includes research data inter...