I'm John Wean. I'm a psychiatrist who lives in Oconomowoc. I've been practicing for 35 years. And as a physician, I go by that old expression, a doctor who treats himself is a fool. And so I went by the urologic recommendations that at age 70 you stop checking your PSA. So I liked that because I didn't want to get involved in that. I know that you get biopsies and all kinds of uncomfortable things. So I went merrily along without treating it. And I had trouble urinating. And I thought, well, I'm 70 years old. It's natural to get a little BPH. And so, of course, you always want to think it's that. And so I self-prescribed some Flomax, an alpha antagonist, to relax the sphincter of the bladder. And I got a little bit of relief from that. I thought, oh, well it looks like it's BPH. Of course, I tried to convince myself of that. And I increased the dosage. It stopped working, then it really didn't work much at all.
And so I switched to Uroxatral, which was another choice. That I did for a few weeks. That stopped working. And basically, I was doing my psychiatric practice. And I couldn't urinate basically. It was just embarrassing. And so I figured I must have prostate cancer. I went to my colleague next door. She's a child psychiatrist. And I said, could you write me a PSA? She did. And I went down to the Wisconsin lab there and it was 68, I believe it was. So I thought, well, it's probably metastatic disease. I thought, here we go. And so I sought the consultation of a urologist a few days later, and then he recommended an MRI and a biopsy, which I had done, a sextant, a six-pack of the biopsy. And that showed a lot of disease. Five of the six cores were diseased with some 4+5 Gleason 9 on most of them. Only one biopsy was benign.
So it looked like things were real. And the MRI showed us a lot of lymph node involvement in the pelvic sacrum around the whole sacral periprostate area. And it also showed some metastases in the bones. And so I thought, whoa, I better get going on treatment. And then my family got involved, and they said ... My son lives out in California. He's very on to things, very on top of things. And my other two sons are also very concerned. My youngest son, particularly, said, you look like you're circling the drain. I didn't realize how bad I was. And so I pushed up my appointment. I tried to get an appointment with Dr. Kilari, and he graciously saw me relatively soon.
When he did blood work that day, he was pretty alarmed. My creatinine was over 9, and my potassium was over 7. And without breaking his expression, I think I would've jumped out of my skin if I saw my patient had that, he very calmly said, well, you need to come upstairs and stay in the hospital for a couple days and get some more evaluation. And also I couldn't urinate so they needed to cath me. And my post void residual was over a liter. So I was kind of a mess. And so I went up to this ... Froedtert, it's got an amazing thing. They really take care of their prostate patients well. You've got this kind of seamless thing. You don't have to go through the emergency room. So you pop on up there.
They did a catheter, which was one of the most painful things I've ever experienced, because the lesion will not allow the catheter to pass. It was quite unpleasant, but it drained out massive amounts of urine. And because of the bad numbers, they just decided to put me right into the ICU. So I spent two days in the ICU, got wonderful care there. Basically, everyone kind of calms your ... It's alarming when you get that diagnosis and you kind of wonder what's going to happen down the line. They were very comforting and weren't alarmed. And they got my potassium, my creatine down to normal. When they thought I was stable enough, they sent me just to the regular ward at Froedtert, and there I started to recover.
Interestingly, I don't know if it was uremic poisoning or whatever, but taste was terrible in the hospital. I really couldn't eat. And the only thing I would crave was broccoli and celery and grapefruit juice. Anything else would just turn my stomach. And so I lost a tremendous amount of weight, which was nice, but I couldn't eat. And I also then had a craving for citrus fruits, orange in particular. And Dr. Worth, the hospitalist there, basically wouldn't let me have it because my potassium was still too high. So we had kind of a fun thing going back and forth when I'd be a candidate for an orange. And one day she said, you can have your orange now. And it was like a Faberge egg when I got it. It was just really nice and it was a beautiful thing.
So they basically got me completely under control of my ... I had a bilateral hydronephrosis when I was up in the ICU. Miraculously, that pretty much resolved. And I had to have a catheter because there's no way I could urinate. And my creatinine grudgingly came down to where it is now at about 1.1 and my GFR's over 70. I'm just so grateful that I was treated definitively.
So then Dr. Kilari wanted me to get going immediately on treatment, which seemed like a great idea. And he talked to me about the traditional androgen deprivation therapy, which I was game for. And they put the Firmagon to prevent the testosterone flare. Then we switched over to Lupron every six months to get the injections in the abdomen. And my testosterone dropped significantly, and my PSA dropped like an anvil in free fall. It was 55 or something like that. Then it went up to 155 after the biopsy. I think that's because it got rattled with that. And it just dropped steadily from 55, just 14, 10, 7, just really great until it was undetectable and it's still undetectable.
So Dr. Kilari has been very good in terms of guiding me through this. And he emphasized the importance of intensifying treatment early on. And I think it was maybe the CHARTER study he had mentioned that the evidence was so compelling that it would be foolish to not do enhanced therapy. My son from San Francisco is very much on top of technology and what's the state of the art. And he wanted me to get a consultation at Mayo, which I did with Eugene Kwon, who's an amazing guy. It was just a lot of fun going up to Rochester. My son flew in from San Francisco with his significant other, which I thought was very sweet of him. He bought me dinner and everything, very nice. And Dr. Kwon basically confirmed the treatment trajectory that Dr. Kilari was recommending and again reiterated the importance of intensification of treatment early on.
So shortly after I got the hormone therapy going, then I got five cycles of Taxotere. That was quite a thrill. It's quite unpleasant. On the internet, it'll say if some people say it isn't so bad, it's pretty bad. I thought it was pretty bad, like I couldn't eat anything. Everything tasted like battery acid. And I got the tingling and numbness in my feet, and that was kind of a deal breaker. I was monitoring that along with Dr. Kilari. And after the fifth cycle, I said, this is getting worse. And it hadn't gotten to my hands yet. So I said, I play guitar. I don't want it to get to my hands. So I said, I'd like to stop after five. And he said, that's fine that the six is slightly arbitrary. He said, you probably got the lion's share of the benefit after five. So I was relieved with that, but was more than happy.
We'd been talking about augmenting treatment with the Zytiga all along, but basically I was too sick. I was just really not feeling well with the hormone and the Taxotere. So as soon as I got my sea legs on, he started Zytiga. And I've been on that ever since with the interruption of about a month ago, where I had a hypertensive crisis. I got up to about 210 over 105. And then Dr. Kilari got me on Norvasc and I added a little lisinopril myself. Brought it right now. Now I'm down to like 135 over 75.
And also in addition, during this process, I had a bone densitometer, which was good. And I consulted with Dr. Amy Guise, who's a wonderful urologist. And she gave me some options in terms of the actual urologic aspects of this disease. We talked about the [inaudible 00:09:36]. And I had the idea since I was on systemic therapy, let's just see what the therapy does. And lo and behold, as the therapy continued, I was able to urinate. And to this day it's not a problem at all. So I did not get a prostatectomy, did not have to have an indwelling catheter. So things have just gone remarkably smoothly.
Basically, I just took Friday off permanently and had my Froedtert and Dr. Kilari appointments. Treatments, they had the Taxotere and all the follow-up visits on Friday, which worked out great. For a few months there, because I was sick as a dog, I stopped practicing and told my colleagues. They graciously picked up for my patients and I gave them a heads up that maybe I wouldn't be able to return back in full form. But luckily I was able to get back in practice. And now my practice is a lot smaller, but I continue to function. And a little bit of cognitive diminution from the treatment. But I think that's getting better too.
Dr. Kilari had wanted me to take the prednisone 5 milligrams b.i.d. with the Zytiga. And I was never a big fan of prednisone. I just didn't like it, didn't want the effects on the metabolic parameters, but I was only taking it 5 a day. And I complained to him about how fatigued I was and not sharp. And he said, well, you ought to take your prednisone as prescribed. So I did. And lo and behold, I perked up. With the plumbing and the tackle of a man, it's just very personal. And we all have kind of excessive ideas of how things are going to hurt and stuff. And then when I had that cath in the emergency room, it was every bit as bad as I thought it was going to be. So then I was kind of phobic about, are they going to do under the cath? Are they going to do another cath? Whoa. And so they put in this indwelling cath and I was just really pleased with that.
But I couldn't walk around. Actually I did for a month or so, even in my practice. I went back to practice with a catheter bag on my leg. And I would show my colleagues, look at this, but that was getting ridiculous and they didn't want that thing to be in me too long. So they said, you're going to have to self-cath. And they taught me how to do that. And initially it was creepy and unpleasant, but it quickly got fairly easy. So I was shown different techniques to do and it was not a big deal after a while. In fact, I kind of felt a little bit of sense of agency and competence being able to do something for myself. But I was still glad to stop having to do that. As the cancer improved, the tightness on the urethra got better with just the cancer receding. So that was what I was hoping for. And that did happen.
I also had genetic testing under Dr. Kilari's guidance and it showed a BRCA2, which was a little bit worrisome. We talked about the PARP inhibitors and whether that was good. And then I got a more definitive biopsy. I don't know what they did with it. They looked at it closer. They sent it out to a more definitive thing. So there was just a little variation of the BRCA2, just a little rearrangement of the amino acids. And they said that they didn't even know if it had any significance. So as far as I'm concerned, I really am not BRCA2-positive, so I'm not probably going to get a PARP inhibitor. But regardless, the combination that I'm on has just basically just wiped this illness out. And we're just basically now kind of waiting to see how much mileage I can get out of this. And of course, there's a panoply of things that we can do if this doesn't keep going.
So in terms of the experience, the fatigue and the weakness are the things that bothered me a lot. And that's really jarring because I used to be very active. Even a couple years before this, I was actually painting my house. So I was up 30 feet on the roof and painting my house, very active. And so that was kind of jarring to recalibrate. There are a lot of things you can't do and been trying to come to terms with that.
My family's just been extraordinarily supportive. I can't thank them enough. My wife would go get me grapefruit juice and celery and broccoli, everything I could eat. And my boys were very, very supportive also. And my youngest son, who was alarmed and said I looked like I was circling the drain, was just very happy when I got under Dr. Kilari's care and got some definitive treatment. So it looks like I kind of dodged a bullet there with that high creatinine and potassium. I probably didn't have too long to go if I hadn't jumped into the ICU there. So I can't say enough about the treatment I've gotten, the kindness, the support, and feel very blessed that I've had such a good outcome.
My family, they just were galvanized by this whole thing and they swung into action getting multiple ... I don't do texts and stuff much, but my folks, my oldest son and his significant other ... Well, she was from Minnesota so they were very fond of Rochester. And they were getting me going there and they got that all set up and they wanted to do multiple scans and stuff. And I said, whoa, Froedtert is going to do a great job. And I said I would do a consultation to honor your request. And my younger son and my middle ... I haven't mentioned my middle son. He was very supportive too and always concerned, very level-headed. So I essentially heed his advice when he says, you've really got to take care of business here. So I was getting it in four sources of you've got to take this seriously.
And my wife, what I thought was pretty cool is that she would do all these unpleasant tasks. She would go out to the Pick 'n Save and I'd say I need sodas. And she'd come back with some. I said, no, I think I need a green one or an orange one. She'd come back with every color of soda. No, that doesn't work. The only thing that worked was grapefruit juice. But she was very patient like that. And I insisted on broccoli and steaming it. And I was really kind of high maintenance. But she tolerated that very well. And I'm cathing myself and just kind of an unpleasant person. And she basically just rolled with the punches with a good sense of humor.
My second oldest son took me on a Mediterranean cruise because I needed to heal. And it was just wonderful. And I got to sing karaoke on The Love Boat, which is something I always wanted to do. And so that was showing that I was still able to function. And he protected me in terms of ... It was basically like kind of having a child. He'd watch out and I'd be falling behind because I couldn't walk very fast. And to get across the streets in Rome, he'd have to make sure everything was clear. It was pretty funny. And he basically just sheltered me and made all the problems go away.
The only regrets I have is that I wish that I wouldn't have listened to the recommendations to not check. I just basically hid behind that. I had a feeling I should have gotten my PSA checked, but I didn't want to have this whole followup of things that I anticipated. I anticipated how unpleasant this was going to be. So I kind of leaned on that. Well, you're not supposed to get a PSA when you're 70. So yeah, that's what I'm sticking to. I wish I hadn't done that. And so I wish I would've had an internist. Yeah, it was foolish. I think an internist would've seen how sick I was. I wouldn't have had to wait for my son to say, you're circling the drain. And that would've been good. So if I had an internist I was tracking with and I think an internist would probably say, well, the Urologic Society says to stop at 70, but you've got some symptoms here that are a little more than BPH. I think we should get a ... That would've probably obviated this whole problem.
When my family was ... They were all very eager to get me the best treatment, and each of them had their own idea of what that consisted of. A couple of my sons were concerned because I was told it was palliative treatment and they wanted to hear that it was curable. And I said, well, statistically, it's not going to happen. But they thought that was not a good sign. I said, I think it is. I think it's just honest. And I said, I appreciated that. When I saw Dr. Kwon up at Rochester, he was more upbeat in terms of ... I mean, he's just a very can-do guy and nothing's going to stop him from trying. I said that's wonderful. But I said, if I start getting in trouble, I'll re-consult with him. But I said, I have the utmost confidence in the treatment I'm receiving here. They finally settled down, and they kind of agreed that we did the right thing.
I also saw Colleen Lawton, when early on Dr. Kilari wanted me to see her just to see what our options were with respect to radiation. She was very thorough in terms of saying what my options were. And part of that was because I was having intensification of treatment already. The hormone therapy wiped me out, and then the Taxotere kind of added to that. So I was looking more forward to Zytiga. And so I thought, boy, I'm going to be a mess if I'm getting radiation in all these three. I figured I'd be unable to crawl out of bed. So I just thought I was too sick to try. Because it was controversial whether that would extend life also. I wanted to be a good Guinea pig, but I said I'm just beat up by this treatment.
As a physician, of course, I thought I knew it all, and I was self-treating for years. I hadn't seen an internist for decades. And I would treat my cholesterol and my blood pressure and my depression and all kinds of stuff and did pretty well. But the thing with urologic problems and cancer problems is for men, it's creepy. That's all kind of very personal and just you're thinking about caths and prostatectomies and all this stuff. So basically, I kind of disavowed that it was happening to me. But then my young son said, you're going to just go down the drain if you don't do something. So basically, I heeded his warning. And when I got into care with Dr. Kilari, I just realized how far I'd pushed the envelope with my self-treatment.
And so I would recommend people just kind of be humble and respect the medical community and their wisdom. Not try to diagnose and treat yourself because they do a lot better job than I did. But the way these people, these physicians are just amazing, their dedication and the way they explain things, they make it pretty clear. And I think you can make a good decision on your own what you want to do. And if you lean, deviate a little bit more, they'll push you back in and they'll kind of say, oh, I don't know if you want to do that. So you won't go off the rails too much. And so I think you're in good shape. I would not want to be defiant or rogue with the recommendations. I think essentially they know what they're doing. But you have input. I mean, when I talked to Dr. Kilari, I said I really don't want to do a sixth cycle of Taxotere. And he said, that's fine.
Now he was more insistent. I didn't want to do that, I think it's called [inaudible 00:21:13] or something. It was a bone marrow stimulant because your bone count drops when you have the chemo. It was very expensive. It turned out it was covered. I couldn't believe it. But I didn't want to do that. And he said, well, no, you're going to have to do that because otherwise you're going to get septic and stuff. So I said, okay, and I'm glad I did.
I just want to reiterate the thing of the incredible intensification of the human experience, when there's a threat of death that just really makes you inhale life, when you start having some morbid thoughts about what does this all mean? I experienced and other people have too, I think, kind of an enhanced enjoyment of life. Things seemed peculiarly poignant and enjoyable, particularly in music. I would listen to a piano passage behind a song that I'd heard many times but never really noticed and thought, my God, that's brilliant how that guy did that passage. I sometimes break down crying, it was so beautiful. And other things, you look at the sunset. It sounds kind of cliche, but really everything went from black and white to technicolor in terms of my enjoyment of life because it made things more acute. You're kind of just floating along, don't realize all these wonderful things. Then when there's a little bit of a threat, it just makes you aware of what a wonderful thing it is to still be alive.