"Adventures" in health care 3

 

April 26, 2026

An "adventure" in health care (American style), part 3

Gary Engstrand

Prologue

              This entire narrative, all chapters, charts a series of psychological ups and downs. A couple of people I know describe these events as a journey. I demur. “Journey” elevates it to a psychological and literary level that is unwarranted. Kathy says it’s a trial, which is more accurate. In my view, it’s the story of many involuntary interactions with the health care establishment with an occasional dash of humor—and nothing more.

              I began writing this chapter with this: I am becoming somewhat weary in mind.

              As an indication of my state of mind, an anecdote. A number of my friends know that one of my retirement hobbies is doing paint-by-numbers: I send a photo to a small company that transforms them into a canvas with paints and sends me back a kit. I then paint it. I had promised one couple a painting of their son’s engagement at the Eiffel Tower and promised another couple a painting of their two grandsons. I was thinking seriously about telling both couples that I wouldn’t be able to deliver on my promise because I could run out of time. I have one more to do (of three) of my granddaughter Svea and I wanted to be sure I could finish it.

              Yes, the foregoing even though two physicians had already assured me that the cancer was not terminal. My (faulty) reasoning was that it seemed like each time there was more information, the cancer was getting worse, so I was getting gloomy about what evaluation might come next.

              I’m glad to say that I was wrong. I don’t have to renege on my promises and I can finish the Svea triptych. Following good conversations with both the nurse who deals with urology radiation and my radiation oncologist (whom I will call Dr. Hirtz), I was relieved.

What I have not mentioned before is that the people with whom I’ve been dealing—primarily nurses and physicians, both in Florida and Minnesota—have been wonderful. The *process* sucks but the *people* have been great.

Into the Treatment

              The first anecdote illustrates two propositions. (1) Sometimes the availability of information on the web is a curse. (2) It is dumb to jump to conclusions on the basis of what one reads on the web, even from a trustworthy source.

One of the two drugs that is part of the hormone therapy is abiraterone (a name I have a heck of a time remembering, and the pharmacist who called me to go over its use said they just call it “abi”). I was to pick up my prescription the day after she called (April 22, same day as my first radiation treatment). I googled it. Here is some scary language from the Mayo Clinic on abiraterone:

Abiraterone is used in combination with prednisone to treat patients with metastatic castration-resistant prostate cancer (prostate cancer that is resistant to medical or surgical treatments that lower testosterone and has already spread to other parts of the body) and metastatic high-risk castration-sensitive prostate cancer.

I read this language the evening before my first radiation treatment (and abiraterone pickup day). My reaction was “holy sh*t, if this is what they’re prescribing for me, the cancer must be worse than I’ve been led to believe.” I had already read a fair amount, and the constant repetition of the phrase “advanced prostate cancer” was alarming, since it applied to me.

              Of course I managed to fret for the evening and the next morning before I went in for the first treatment. Dr. Hirtz had told me he would see me after the first treatment and then every two weeks. So at this meeting with him, I asked about abiraterone. Dr. Hirtz explained that yes, they do use it as part of a strategy in dealing with cancer that has greatly metastasized. But they also use it in less drastic cases, in combination with another hormone therapy drug to try to ensure that any cancer cells floating around cannot grow; its use in my case does not mean I have “metastatic castration-resistant” cancer. Phew. And I felt like kind of a dope for getting all exercised about it.

* * *

              Prior to seeing Dr. Hirtz at this time, I had formulated a few questions. Once I got beyond my scare about abiraterone, I went on to the others, and the first one was the most important.

-- What is the probability that I will be alive in 5 years, assuming no other cause of death? 1 in 2? 1 in 20? 1 in 50? Are you going for a cure?

It is highly unlikely that I will die in the foreseeable future from prostate cancer. He said, at least a couple of times, that he is going for a cure and expects to achieve it, between the radiation and the double-barreled hormone therapy. Even with a roughly 33-40% chance of recurrence, which would be 5-10-20 years out, there are treatment regimens that control it like a chronic disease. Dr. Hirtz said “you’re young, you will do fine.” I smiled at him. He conceded that I’m not 50 but pointed out that I’m not in my mid-80s, either.

               Maybe it’s true of many patients with serious cancer, but I wanted to be continually reassured that it’s not terminal. Dr. Hirtz is the third physician who told me that, so I guess I can quit asking the question. Hence my comment at the end of the prologue that “I was relieved.”

              I have said on occasion that I’m less concerned about *when* I die than I am about *how* I die (e.g., no thank you Alzheimer’s or a variety of dementia). This intersection with cancer has made it clear to me that “when” is not now! A friend of mine read my story and wrote “I remember seeing a desk sign that said ‘Dear Cancer, thank you for reminding me what is important in life. You can go now.’ It is true that all we are doing is forestalling the inevitable (as your friend pointed out), but in the forestalled time, we get to enjoy this wonderful planet, be surrounded by loved ones and friends, go on new adventures or re-create old ones . . . definitely a worthwhile time!” Yep, and why I want *it* to go now and not me.

-- My wife and I go regularly to a fitness club. Should I exercise as usual, including cardio, weights, leg push, planks, etc.? Are there specific exercises I should avoid?

No, and exercise remains a good thing to do. But I may have less stamina as the treatments progress over the next five weeks. That made me chuckle. I didn’t have that much stamina to start with!

-- Does alcohol affect treatment outcome? Part of our daily ritual is the cocktail hour. We don’t drink a lot, but does any alcohol have an adverse effect on treatment outcome?

No, just everything in moderation.

-- What is the level of fatigue on average from the hormone therapy and radiation? What factors influence how fatigued I will be? I assume naps are okay.

It varies a lot. Some people experience almost no side effects, some are constantly tired. Take a mid-day nap. Since I’ve been doing that pretty much daily since I retired, this will not be a change in habit for me! Fatigue is more likely to be noticeable by the third or fourth week of treatment. I’m going to be an optimist and assume I won’t be tired. I don’t want my social schedule disrupted any more than necessary because of this stupid disease.

-- What is your interpretation of the PSA of 27 after 13 in December and 17.7 in February?

The cancer became more aggressive, although it still hasn’t spread too much beyond the prostate. But that is why he is taking a more aggressive approach to treatment. I didn’t ask—maybe will—whether all that ditzing around in Florida, waiting two or three weeks for appointments, gave the cancer more time to become aggressive. Not much I can do about it if it did, but that would lend credence to the proposition that health care is better in Minnesota.

-- Is taking simethicone (aka Gas-X) a problem?

Not only is it not a problem, they recommend it, and suggest routinely taking it with every meal. OK, I will! I’ve already added more medicines than I’ve had in my entire life, so what’s another tablet?

              More generally, the treatments are high and low doses of radiation. High where cancer is clearly indicated by the PSMA PET scan, low where the scan is ambiguous and in the surrounding tissue where stray cancer cells might be lurking. 

              One of the treatments that Mayo offers is “PSMA-targeted therapy . . . PSMA+ metastatic castrate-resistant prostate cancer. A radiopharmaceutical, lutetium LU 177 vipivotide tetraxetan targets and sticks to cancer cells to precisely deliver treatment.” I asked the oncologist about that. Dr. Hirtz said it’s a study, and the drug, radioactive, is injected into the body to circulate to get cancer when it has spread many places. So it’s like brachytherapy, I asked? It is, in that it’s an injection, but it’s only used in seriously metastasized cancers. I told him I’d gotten the same answer from him and the two urologists about brachytherapy and had decided to tell the guy, the true believer advocate, to go fly a kite. I only did it in my mind, not in a message.

* * *

              The treatment itself: In the room with the radiation machine, I’m to lay on a narrow waist-level platform. It’s hard and there’s no padding, like lying on a blackboard. I asked what it’s made of; it’s carbon fiber. The machine is a linear accelerator, which sounded to me like something used in particle physics experiments. I’m told the machine costs upwards of $2 million.

              Lying on this “bed” of carbon fiber, there are four arms that stick out from a machine behind my head, one arm on each side and one on top and one on the bottom (under the carbon fiber). Two of the arms end in large white rectangles, perhaps 2’ by 3’, one has a large white hemisphere perhaps 3’ in diameter at the base, hovering above me, with what looks like an aluminum foil square in the center, and the fourth arm has a smaller white sphere about the size of a basketball. The white rectangles, one sort of above my chest and one sort of above my mid-section, are used for scans (not quite sure what they do). The large hemisphere is the instrument that delivers the radiation. The small white basketball takes the scans.

The four arms slowly rotate 360° around me; the carbon fiber slab doesn’t interfere with the scanning or radiation (understanding *that* is way above my pay grade). I just lie quietly, watching these shapes go around and around, scanning and radiating the full circle, for about 10 minutes. If you’ve been in an MRI scanner, you know you get the BANG BANG BANG BANG, WHIRR WHIRR WHIRR WHIRR, TAP TAP TAP TAP, RUMBLE RUMBLE RUMBLE RUMBLE (or something like that) all very loud and repeating several times. In contrast, the linear accelerator is almost completely silent, just these four arms with rectangles and balls slowly circling around me. It seemed a little weird, science-fiction-y, and I certainly have no sense that I’m being bombarded with toxic rays. Then I’m done.

* * *

              I don’t know what my co-pay on the drugs would be. The abiraterone on drugs . com is $71.95 for 30 tablets. The Orgovyx on the same site is $2,787.12 for 30 tablets. Minnesota Urology covers the cost of the drugs beyond what my insurance pays. I don’t know how they do it but I’m certainly not arguing with them.

* * *

              In normal social discourse it is unseemly to talk about bodily waste elimination systems. However, this is a story of cancer diagnosis and treatment, and liquid waste elimination suddenly became a part of the story after the second radiation treatment—at a bridge game with seven friends. After the second morning of radiation, that afternoon I could barely urinate, and what little I did also hurt coming out (maybe a ~4 on the proverbial 0-10 pain scale). I was a little frantic and frankly depressed, another emotional down, and I am here to tell you that when you cannot urinate, or only barely so, you don’t think about much else.

              I wrote later to the seven bridge players explaining why I was somewhat subdued and in the bathroom and on the phone (getting an urgent appointment with the urologist). One wrote back with a marvelous line: “I can identify with your discomfort and getting accustomed to the humbling stages of life.” Boy, he got that right.

              When I went in for the third radiation session, I groused (light-heartedly) to the lead technologist (a 50-something sweetie) that she’d really messed up my urinary system. She said, “so soon?” So not a surprise to her.

Immediately after that third session I saw the extremely knowledgeable and friendly nurse at Minneapolis Radiation Oncology; he said that my problem was common when going through radiation treatment for prostate cancer and he had solutions. One part of the solution was amazingly simple: take 600 mg of ibuprofen twice a day. The other part was a medication he prescribed, Flomax, which "helps relax the muscles in the prostate and the opening of the bladder,” says the Mayo Clinic. The Mayo website included this language:

Using this medicine [Flomax] with any of the following medicines is usually not recommended, but may be required in some cases. If both medicines are prescribed together, your doctor may change the dose or how often you use one or both of the medicines.

The first drug on “not recommended” the list?  Abiraterone. I don’t like that, but I gather it’s pretty routine to prescribe Flomax along with abiraterone for men with prostate cancer.

As with many—most—meds, there are side effects, but of course the frequency and severity of those effects varies a great deal across individuals. Some of them for Flomax, however, are serious.

              I have now gone from one pill a day a month ago (a multivitamin for seniors) to 15 pills per day after the third radiation treatment. Here’s the evening menu:

I suppose many people my age take a lot of pills, but this is a new experience for me, and not one I particularly wanted.

              I’m not sure I’ll take the Flomax, if the ibuprofen works well enough. At the least, I’ll ask about the potential interaction effects. I recall a conversation I had with (my daughter) Krystin’s psychiatrist about a dozen or more years ago. Krystin had been on a number of drugs related to her diabetes and at one point ended up in the psychiatric ward of the hospital because she was hallucinating. I spoke with the psychiatrist and wondered whether this incident was provoked by drug interactions; Krystin was not the type who hallucinated or otherwise suffered from psychiatric issues. The psychiatrist agreed that it might have been the case; he changed her drugs and poof!, the hallucinations vanished. The guy also commented to the effect of “once you get beyond two drugs, maybe three, we have no idea what the interaction effects are, and anyone who says we do is lying.” I don’t think I’ve had any interaction effects so far, but I’m not thrilled with the idea of adding yet another drug to the cocktail I already have to consume.

* * *

              I don’t know if there will be a “part 4.” I hope that I’m through whatever hiccups there are in the treatment process and it will play out as it’s supposed to through the end of May. I stay on the abiraterone and Orgovyx for 18 more months, but in the meantime I’m just fine. That’s the way the story is supposed to end! On the other hand, I didn’t think there would be a “part 2,” so who knows?