I have written before about my old-geezer struggles with benign prostatic hyperplasia (BPH, i.e., “enlarged prostate”), PSA tests, biopsies — and intense discussions with my physicians about interpreting the numbers. August 1999 was the month when a routine blood test yielded a distinctly- elevated PSA, resulting in a referral to a urologist. As it turned out, that appointment was merely the first of many over the intervening years, resulting, so far, in 29 blood tests for PSA, two prostate biopsies, a decade of taking Flomax, and a November 2009 emergency room visit for urinary retention that resulted in catheterization for six days. (Now, that was a memorable Thanksgiving!)
Over 15 years of testing, my PSA numbers have risen steadily (sometimes dramatically), my prostate gland has continued to grow, and my symptoms have become progressively worse. In the course of all those doctor visits, one fact became increasingly evident: should I be so fortunate to keep on living, I would eventually need surgical intervention for my condition.
And, so, that time finally came. During the summer and fall of last year, living with this condition became more and more problematic, and even a double-dose of my medication didn’t provide adequate relief. Reluctantly, very reluctantly, I came to acknowledge that the procedure known as a “TURP” (transurethral resection of the prostate) was imminent.
On December 6, 2011, almost six weeks ago now, I entered Marin General Hospital to have the operation. So, dear reader, be on guard. I’ll be writing more about this journey in coming posts.
The Fourth of July this year promised to be a good-weather day for the entire Bay Area, so I took advantage of this prediction and hopped on the 11:40 ferry into the city to spend a few hours doing my walkabout-photography thing. It was a verynice day to do this, as it turned out, so I was feeling pretty pleased with myself (for both the photos and the exercise) as I boarded the 4:30 back to Larkspur. However, despite the incredible, sunny, 70-degree downtown weather, the water in the bay was very choppy, and it was offering up a lot of sea spray as I sat in the back of the boat during the first few minutes of the trip. I decided I didn’t want to endure this for the entire ride and got up to change seats. Just as I stood, the boat took a particularly big jump in the water, and I was tossed onto my backside: my right shoulder hitting one of the solid plastic benches that are permanently affixed to the deck.
As I clumsily pulled myself up, I was in agony. I thought that I’d probably pulled a muscle (or something); I could barely move my arm. I sat there in over-the-top pain for the remainder of the trip, not knowing much except that I’d be making a stop at the emergency room right away. At the ferry landing, I filed an incident report with the ship’s captain, then drove myself, one-armed, to the hospital. Upon examination, and x-ray, the ER staff determined that I had broken my scapula (shoulder blade). Yikes!
I drove home with my arm immobilized in a sling. I endured some pretty incredible, constant pain for the first couple weeks or so. I hibernated for awhile, and stayed away from work, but eventually I started moving again. Within ten days of the incident, I had seen an orthopedist, had a CT and MRI to gather more information (and determined that my shoulder didn’t need surgery), and had kept my first appointment with a physical therapist.
It took about thirteen weeks, a quarter of a year, to get mostly back to “normal.” To facilitate the healing process, I was a model physical-therapy patient, doing my routines at least 2 or 3 times every day. My recovery was “uneventful”, as the orthopedist said, and I feel fine now.
Well, mostly.
The side effect that I didn’t anticipate seems to have been due to my greatly reduced level of physical activity during the recovery period. (At least this is my current working hypothesis.) I have been feeling more and more anxious for several weeks now, including dealing with some pain in my chest (a long-standing anxiety symptom for me). I think the longer I was inactive due to my injury, the less able I was to cope with my myriad, underlying anxiety issues. Of course, the worry haunted me for a quite awhile that this pain wasn’t merely anxiety, but indicative of a heart problem. Hence, I went to see a cardiologist and took a stress EKG test (the one involving a treadmill), along with a stress heart echo (sonogram). According to these procedures, my cardiac function is fine. Whew!
I just joined a local fitness center, and I have my first appointment with a personal trainer this week. I need to get more active, and it seems this would be good way, what with winter coming on and all. (My walking routine typically suffers in bad weather.) Exercise has always been the best way for me to cope with my anxiety and depression woes.
It really is time for a change. Wish me luck.
Soundtrack Suggestion
If you knew that you would be alone, Knowing right, being wrong, Would you change? Would you change?
If you knew that you would find a truth That brings up pain that can't be soothed Would you change? Would you change?
I have a European friend who, like me, at this moment, is on vacation. And, somewhat parallel to my experience, it appears that her time “on holiday” is not exactly all red roses and vanilla ice cream. (Whatever that might mean...I just made that up.) I know of this through her tweets...as I listen to her voice (on Twitter) speak of tears and pain.
Now, my vacation does not feel as viscerally low as hers sounds. However, I did schedule my vacation time this summer to relax, re-charge, and re-energize. And it’s not turning out that way at all.
My first week of vacation was scheduled for the week of June 22, and I had plans to re-visit Santa Fe and take lots of photos. Well, you know what happened then...June 22 was the day I ended up scheduling my prostate biopsy. The entire week was devoted to that procedure and my recovery. No break there.
I tried to be philosophical and say, “well, I’ve always got the time away in Oregon and two days of the Oregon Country Fair!” This weekend was supposed to be another photo-filled few days for me in my old stomping grounds, at one of my favorite events in the universe.
At the time of my biopsy, it didn’t much occur to me that I’d still be recovering this far down the line (it’ll be three weeks tomorrow from the day of the procedure). But, recovering, still, I am.
Because of the rather unpleasant symptoms associated with this bumpy recovery process, I’ve been advised to limit my physical activity. And, since my visits to the Country Fair typically involve hours of walking with heavy camera equipment, I decided against attending at all.
Bummer.
Not that my time in Oregon has been a total waste. Actually, quite the contrary. I’ve had time to visit with a few of my favorite people in the world, which has been quite delightful.
However, here’s what I recognize: I’m not rested. I’m not relaxed. I’m not re-charging. And, I’m mildly depressed. My body issues have tended to dominate both vacation periods, necessitating a change in my photography plans (my preferred time-off, relaxation activity).
I feel out-of-control and cheated. You know, the “life is not fair” kinda thing.
Given the intensity of my life lately, especially the high-stakes medical testing I’ve had to endure (see the previous post, including its two updates), I thought I’d offer up some news today of a much lighter nature:
I have a new cell phone.
Big deal, eh?
Well, of course, it’s not just ANY cell phone I’m talkin’ about here. I discarded my old Motorola Razr for the latest, greatest, new-generation iPhone from Apple: the 3GS. It became available last Friday, June 19, and I was one of the first to own one (along with a reported one million others in the first three days of its release). I reserved it online and went to the local Apple store that morning to pick it up. When I arrived, I was ushered directly into the inner sanctum, despite the incredibly long line of sad souls who didn’t have the foresight to make arrangements in advance. (After I met my iPhone specialist, it only took two hours of my life, along with several hundred dollars, to make this all happen.)
Basically, here’s what I did: I bribed myself. For scheduling the prostate biopsy, having to actually go through with it, and needing to cancel a scheduled vacation to Santa Fe, I thought I earned, and deserved, a treat. So I chose the iPhone. (And, of course, the name of the device is a total misnomer since only one of the things it does is serve as a cell phone. I’m sure I could get it to serve me breakfast in bed, if only I could find the right “app.”)
So, during the last few days, I have been learning how to use this marvelous piece of technology...which is really a computer that I can clip to my belt. If you email me these days, there’s a good chance, I’ll even reply to you from my “phone.”
Right now, life is good. I am cancer free and I have an incredible new toy. Plus, in a couple of weeks, I'll be totally escaping reality and roaming around the Oregon Country Fair.
This long essay (it’s at least four times optimum blog-post length) makes my personal case against the “medical establishment.” I do not take on the insurance companies here, though, but rather the doctors who provide front-line health care for us all.
Caveat lector: this post would likely merit an “R” rating near the end...
I’m one of those old geezers for whom the TV commercials advertising such products as Flomax and Proscar are made: I have an enlarged prostate [benign prostatic hyperplasia (BPH)]. BPH is characterized by a number of urinary symptoms, one of the most obvious being the number of times I have to get up during the night to relieve myself. (For a list of other symptoms, click here.)
As I have monitored my condition over the last 12 years, with the assistance of various urologists in the cities I have lived, I have regularly (at least every six months) undergone the blood test for prostate specific antigen (PSA), the front-line screening protocol for prostate cancer. During this time, as my prostate has grown in size, my PSA has risen slowly, steadily, but not dangerously. I keep track of the results by means of an Excel spreadsheet and graph, and even furnish my doctors with a least-squares plot of these data at every appointment. At one point, back in late 2002, there was an unusual spike in the one of the readings, and I was advised to have a prostate biopsy. This procedure is a very invasive and uncomfortable one, but I went ahead, in early 2003, and did it anyway. After eight full days anxiously waiting, I finally was informed that the result was negative. Since that time I have simply continued to monitor the slow, steady, predictable rise of my PSA level.
Well: except that that all changed recently. In both January and March of this year, my PSA tests have yielded significantly higher readings – data that do not fit neatly within the paradigm of my least-squares analysis. After the January result, my urologist reacted as I did: one test alone means nothing. Let’s wait a bit (a few weeks) and do it over again.
And that’s what we did, though the second test in March indicated a slightly elevated level compared to the January number. It was at this point that he stated that it was time for concern and said, “you know where we go from here.” He meant a biopsy, of course, and I declined, indicating that I wanted to wait for one more blood (PSA) test before undergoing that procedure again.
However, he was very insistent that we do a biopsy, and I was just as opinionated that it was not yet time. I told him that I had one more hypothesis to test out before I would submit to the procedure. Simply put, my theory is: my PSA number is inflated due to a new dietary supplement I had started taking. Last October (over two months prior to the January blood test), I began a product called ArthroZyme, advertised as an anti-inflammatory agent, to see if it would help me out with the chronic muscle pain that has plagued me for the last few years. The active ingredient in this product is a proteolytic enzyme called serratiopeptidase. And, as it turns out, PSA itself is itself a proteolytic enzyme. I believe it is much more than coincidental that immediately after I began taking a proteolytic enzyme supplement I start testing differently for a specific proteolytic enzyme. I believe the two phenomena are connected and that this is the simplest possible, and most likely, explanation. I contend that this hypothesis is one that merits serious consideration, and that I should, therefore, simply stop taking the supplement and re-test.
As it turned out, I was only able to leave the urologist’s office in early April after hearing the strongest language he could muster that I was making a mistake and the he strongly recommended this test. NOW.
Of course, I don’t think I’m being at all unreasonable.
In short, my trust of most medical professionals is exceptionally low, based on a history of negative experiences, how I’ve been treated by said “professionals,” and the inability of so-called “Western medicine” to get a cancer diagnosis right or to provide any kind of explanation for what’s going on with my chronic pain.
In the urologist’s office, I had to ultimately, assertively, take charge of the meeting and say, “look, this is how it’s going to be: I’m stopping the supplement and we’re going to re-test in a few weeks.” I took away with me a lab order for the blood test and an appointment card for early June.
THEN: last week I showed up for a previously-scheduled appointment with my primary care physician. After a very cursory greeting, he immediately launched into a lecture on how irresponsible he thought I was being by ignoring the urologist’s advice. In fact, he went directly to his computer screen and read to me, word-for-word, the report forwarded to him from my urologist. The write-up was clearly written to make certain that there was no doubt that I was ignoring sound medical advice, but the most irritating and distressing element of the exercise was that he read it to me with an intentional and highly-exaggerated condescending attitude. He was clearly trying to shame me into changing my mind by giving me the message of (a) how stupidly, (b) how crazy, or (c) how both, I was behaving.
“Interesting,” I said. And then I showed him the latest PSA graph, the supplement bottle containing the proteolytic enzyme I had stopped taking, and offered my explanation. I indicated to him that I was merely applying the well-known principle of Occam’s Razor: “The simplest explanation for a phenomenon is most likely the correct explanation.”
To which he, again, with an air of annoying superiority, replied, “that would be fine, except that what you offer is NOT an explanation at all, and you’re taking unnecessary chances with your life.”
I had experienced this kind of situation with him before, of course. The first true break in our relationship came about when he labeled my physical symptoms as likely “psychiatric” in nature. During the appointment at which that language was used, I let it go; I confronted him on his condescending behavior the next time I saw him, however. And he apologized at that time.
He apparently really doesn’t get it, though. Now the same kind of attitude was being exhibited over my PSA result. I sat silent for a half minute or so, took a deep breath, and then said,
“Look, I really don’t think this relationship is working out. I have much different expectations of physician behavior than you have been able to provide. Some of the qualities I expect from you are clear communication, respect, decency, dignity, honesty, and support. I resent your snobbish, superior, condescending attitude and your assumption that you know what’s “right” for me. Let me tell you, I’ve spent a lifetime becoming an expert not only on my body, but on knowing my inner self...and believe me, the numbers you have cataloged away in your little computer there are not me. I know me. You don’t. Not at all. And, you’re apparently exceptionally reluctant to allow me the freedom to make decisions about this body myself. I think it’s best to part ways, and I’m wondering if there’s any physician you know of that would be open-minded enough to take on a patient who knows what self-care is and is seeking a doctor who will serve as a consultant to that self-care.”
And I wasn’t done yet...
“Look” (I said yet again; I was repeating myself), “I’ve got the lab order for the PSA test right here in this folder. And I’ve got my next appointment with the urologist scheduled. I’ve got time scheduled away from work in June for a trip, but the plans are soft. I can easily change them and stay here and be available for a biopsy. I’m testing a hypothesis. A reasonable one, I think, but I know I could be wrong. I’ve got the plans all laid out. I’m taking care of myself. What the fuck is your problem?!”
This guy, taken in tandem with the urologist a couple of weeks earlier, had obviously struck a nerve with me: pushed my buttons big time. I immediately started reflecting on all the pre-med students I had competed with in math and science classes in college – along with my complete and utter disdain for them at the time. They were all about their course grades and med-school admission. They were exceptionally good memorizers of content, but, generally speaking, amazingly poor critical thinkers. They always got A’s, but I always got a higher A, especially in those courses that really meant something: organic chemistry, physical chemistry, etc. I pretty much kicked their collective butts. Pre-med? HA!
During my time in my primary care doc’s office, I became angry, resentful, (defensive, of course), and as assertive as I’d ever had to be in that kind of environment. I was appalled that I hadn’t changed doctors when he had labeled me a nut case the year before.
He ultimately apologized. Again. He said that he did listen to me and support me. And he said that he really didn’t know of anyone that practiced medicine any differently than he did...that everyone he knew was as skeptical of dietary supplements as he was, and suspicious of patients who experimented with unproven “natural” substances who sometimes ascribed to them “magical properties.”
I left the appointment by reiterating that I had a plan, that I was sticking to it, and that, despite his insinuations, I was neither stupid nor crazy. I said, simply, I knew how to take care of myself, and I was doing just that.
Now: could I be wrong about all this? Could I be merely delaying the inevitable cancer diagnosis by insisting on testing my theory? Might I simply be afraid of undergoing a painful, invasive procedure? Might I be terrified that I really do have prostate cancer?
The answers to the above: YES, of course. To any or all of them. But, it seems to me that I have a legitimate theory, one that I’m entitled to test out. The blood will be drawn next week and we’ll soon see if the PSA level drops. Or not.
Could I die? Well, yes. We’re all going to die, right? Have I put my life at risk by testing out a reasonable hypothesis? I rather doubt it, but, as I remind the doctors, it is my life to risk. In the matter of my body, I get to choose. Pure and simple, I get the final word here. It’s my body. It’s my choice.
Dear Doctor: If you are unable to partner with your patients in their care, then you have little business doing your business. Go be an auto mechanic, where the computer diagnostics these days are amazing, and quite often accurate, I’m told. Or, at least, do something else. And, for sure, if you can’t treat me with any more dignity, respect, or support than you’ve been able to muster so far: please go fuck yourself.
Soundtrack Suggestion
I told the witch doctor I was in love with you I told the witch doctor I was in love with you And then the witch doctor, he told me what to do He said that ....
I need to be honest: my theory was wrong. I still think the hypothesis had merit, and that I was right in testing it out, but after stopping the supplement for two months, my PSA remained the same. I have now consented to a prostate biopsy, presently scheduled for June 22.
Stay tuned.
Update on June 24, 2009:
Here is the email I sent out to a bunch of folks this afternoon...so, in case you haven't heard yet...here is the (good) news:
Greetings!
(Sorry about this group email, but it’s most efficient in getting the word out to those of you I promised the news right away...)
Yes, the news is good: the biopsy (just performed yesterday) is negative. No cancer!
After a terrible day yesterday (this procedure is way not fun), I woke up this morning with the pain gone and an optimistic attitude. I had this sense that I would get the news today (it was promised by Wednesday, tomorrow), and that it would be good. My intuition was right on, it seems. The doctor called at 1:40 p.m. and I do not have to see him again for another six months...what a relief.
Thanks for all your kind words and loving support. It (you) made a huge difference for me!
