John Harrison : 0:01
It's been three years now and nothing has really gotten better. I still feel pain when I sit. Most of the time I have to either stand or lay down. It's just been one big thing after another.
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Joel Nowak : 0:30
Hello, this is Joel Nowak for cancer ABCs. Today we're going to be speaking with Mr. John Harrison, who has an unusual story to share with us. JOHN has prostate cancer, which was treated with radiation. But John has been one of those men who has suffered with many significant complications from his treatment. John has agreed to speak with us and share his most difficult journey. Before we get into his story, I want to say that I have known John for many years, John has been an active member of the cancer ABCs Advanced Prostate Cancer Support Group. Despite the very rough road he has experienced, he remains amazingly optimistic. John, I want to thank you for joining us. And I also want to start off by asking you, if you would share a little bit about when you were diagnosed and how you were diagnosed.
John Harrison : 1:29
Sure, Joel, good to be on. See when was like diagnosed? Officially, it happened in the summer I guess of 2015, PSA was elevated. My GP told me to get it checked. I went over to NYU, and had a urologist there, do a core sample he came back and he says, yep, you definitely have it. I would like to do the prospect to me here. And I was thinking Well, let me get another opinion. My wife knew another doctor she called and talked to him. And he recommended this guy doctor who came highly recommended that he's the guy to see in the city. So I went and I saw him and he said, Yeah, you definitely have it. We should do a prostatectomy. It looks like we know we have a good chance of getting it, because you're young. I was 59. I went in and did it in September. As I was being released, they were all optimistic. And they said me looks like we got it. Congratulations. And then about a month later, they said, well, it looks like we didn't get it all. So I want you to see my guy and start radiation treatment. Went over to Mount Sinai West and started the treatment there just after the holidays in 2015. Went through 45 treatments. Everything seemed to be fine, and just had the usual radiation fatigue and whatever, able to go away on vacation for a few weeks. So that was nice. And then things started going south. I started having real problems with the colon, and pain and blood and all kinds of nastiness. So, went to a GI guys. They all said, Well, yeah, this looks like it's from radiation. So I feel great thanks. And it just kept getting worse. And I tried to deal with it for a year I was in pain management. I barely left the house. I couldn't be more than like 30 feet away from the toilet, because I felt I had this constant urge that I had to run and go to the bathroom all the time. It just got so bad that the pain was so bad no matter what they did, it didn't help. I had enough pain meds to kill a small West Virginia town. Nothing seemed to be working here. Then, at the end, they said well try hyperbaric, so I went to a hyperbaric chamber at NYU hoping that might heal things up and I'm went through about 50 sessions there, finished that up just before 2017 and didn't see any progress. It had led to rectal incontinence or not necessarily from that, but just that it was getting worse, nothing was getting better. I couldn't take the pain. So I finally decided listen to one GI, who said she'd do a colositomy bag, and we went in February of 17 for that. The procedure was okay. I mean I wasn't wild about it, and it was a loop procedure, with the idea that if things started to heal up with the scar tissue in the rectum that we could reconnect it and things could go back to the way they were. It's been three years now and nothing has really gotten better. I still feel pain when I sit. Most of the time I have to either stand or lay down. It's just been one Big thing after another.
Joel Nowak : 5:02
Wow, that's a heck of a story. I'm actually going to go backwards with you a little bit. I want to ask some questions for clarification, help other guys who may not be familiar with the experience or the language. Roughly you had surgery, and then you said that it didn't work. So the first question is, how do you know it didn't work?
John Harrison : 5:23
After the operation, they of course monitored my PSA level and it was very low as when I was released in the hospital, and then it kept on ticking upward and ticking upward finally got back up to the point where they said, Okay, I think you should consider radiation. Because apparently we didn't get it all and the radiation should do the trick.
Joel Nowak : 5:44
Basically, you knew that you had what's referred to as a reoccurrence because your PSA was going up after the surgery.
John Harrison : 5:51
Correct.
Joel Nowak : 5:52
Got it. Okay. And then the next move there was to do radiation which is a pretty standard next step for failed surgery. Do you know what type of radiation you were given?
John Harrison : 6:06
It was just broad being five days a week. I felt like it was never ending. I wrapped that up on April Fool's Day. (Laugh) That's stuck in my mind. Seemed like everything was okay. At that point PSA had dropped significantly, pretty much undetectable.
Joel Nowak : 6:23
So, while you were undergoing this radiation, did you have any side effects? Did you feel anything? How long did the process take? Just if you could share with us what the actual experience was.
John Harrison : 6:37
So, you know, a little more fatigued than usual, but I was able to get through the day, all right, and as the months went by, about six months later, I just started noticing that I had no energy I could barely, I would walk around the block, you know, with the dog or whatever, and there's a slight hill and by the end of getting up to that slight hill I felt like I just climbed the Appalachians. I really noticed it in just the fatigue shad set it. Shortly thereafter, I started having problems with the colorectal scarring. It felt like spasms, like I constantly had to go to the bathroom as I was going through a lot of pain because things were not expanding to let anything pass through. It got to the point where I was. (laugh) I could barely even get anything up there like an enama or anything else because it was just so painful.
Joel Nowak : 7:37
You mentioned then that the next thing you did was hyperbaric treatments.Is that correct? So what is it what is hyperbaric treatments?
John Harrison : 7:47
Hyperbaric is, I think originally it was developed for divers who had the bends to get the extra nitrogen bubbles out of your bloodstream. It then became useful as I found later that firefighters who were badly burned would go in and would help with the healing of the skin. From then on, a lot of plastic surgeons started using it for helping to remove scar tissue and helping healing with the increase in oxygen. Usually you're in there for about two, two and a half hours its long tube, you feel like you're getting pushed into a torpedo tube. And it's plastic and you can see out it's no problem and there's usually a big screen TV. For two and a half hours the biggest decision is what to watch on TV.
Joel Nowak : 8:33
There's actually a tube that you climb into and do you feel claustrophobic when you're in it?
John Harrison : 8:41
No, no, I mean, I yeah, I'm aware, but I've never had any kind of issue like that.
Joel Nowak : 8:47
Do you think for some people that it could be an issue?
John Harrison : 8:50
It might be but I've seen all kinds of people in there over the years,. Some of them in really bad shape. It's a little odd when they you are basically on a stretcher in a slide you in metal behind you a big metal like submarine pressurized door and they slide you in. They have an intercom so they can talk to you. They have now a mask that you breathe normal air through about three times for like 20 minutes each during the course of the event. They locked the door, like wow, that really sounds solid and then they start pumping in the oxygen. They bring it up to about two and a half atmospheres. Really quite comfortable the whole time.
Joel Nowak : 9:32
You don't feel any discomfort, any pain or anything like that?
John Harrison : 9:35
No, just just popping in the ears. But I used to dive so I have no problem equalizing the pressures. You have to go through a whole list every time you go in there. You don't have any jewelry you don't have any hair lotions, deodorants and different things you have to wear only the clothes they approve of because they have to be worried about in them might cause a spark (laugh) with that much oxygen in the tank they're not, you know, it would not be a pleasant thing.
Joel Nowak : 10:08
No, that makes a lot of sense.
John Harrison : 10:10
Yeah, yeah. Yeah, that's pretty much it. I mean, I don't really have any problem and you're in there. If you're cold, they can adjust the temperature in the volume. They can change the channel if you're bored. Or you can times you can even be able to nod offer a little bit. You come out and you get changed. You say goodbye. And you come back and do it again the next day.
Joel Nowak : 10:29
Right. And when you did this, you I think you said you did 50 treatments. So you went the 50 days straight days.
John Harrison : 10:37
Yeah.
Joel Nowak : 10:37
Or did you have a break?
John Harrison : 10:39
Yeah, yeah. five days a week in any kind of major holiday when theyweren't open open.
Joel Nowak : 10:45
And it was about two and a half hours that you were in the tube.
John Harrison : 10:48
Right.
Joel Nowak : 10:49
That's a big time commitment.
John Harrison : 10:51
Yeah,
Joel Nowak : 10:53
I think you indicated that you didn't get the kind of relief that you had hoped from doing these treatments.
John Harrison : 11:00
Right. Nothing at that point was helping and the hyperbaric I was had heard about and I was hoping maybe this is the thing that will help. It didn't really do it. The heck with it. Do the colostomy bag and hopefully things will clear up enough that we'll be able to rehook everything back up and go back to a normal life style.
Joel Nowak : 11:23
And the colostomy is when they basically reroute your excretement or your bowel movements into a bag, as opposed to going through all a part of the colon, is that correct?
John Harrison : 11:37
Yes, yes, they left a small part open so that things will go down to the regular rectum to try to keep things active there. They can reattach it later and there shouldn't be any issues but mainly about I would say probably 97% of it comes out through the bag.
Joel Nowak : 11:54
What is it like living with a bag.
John Harrison : 11:56
Um, at first it was a little off putting and somewhat something that you figured you'd never have to do in your life. You just get used to it after a while and you're going to okay, no big deal. You go and you do what you have to do change the bag every couple of days. You don't feel when it's filling up, but you have to check physically and feel the bag just to make sure because you don't want it to get too full and there's always the possibility of what they call a blowout, which again, doesn't is not a pleasant experience. I've never really had one, but it's kind of close.
Joel Nowak : 12:35
It sounds unpleasant. So the bag is this concealed. Could you go out with it?
John Harrison : 12:43
Yeah, why? Where it's attached, I would say about five inches over from my navel, on the left hand side. You can see it if you just wearing a T shirt plus I've put weight on so things tend to stick out more. So I've taken into wearing loose shirts a lot. Other than that, you don't really know it's there. Been to a few group meetings with the Ostomy Society. They tell stories about how they go swimming and this and that. I have gone in the ocean a few times, but I'm leary and no big waves. There are things that you can wear to help keep things in. So if you get tossed around in a wave or whatever, nothing comes apart. Just take some planning.
Joel Nowak : 13:28
How would you describe the changes and how you go day to day because you have the clostomy to me bag?
John Harrison : 13:37
Well, there's still some changes. There's a few things that cannot do, for instance, I cannot ride a bike because the pain is still so bad every time I sit down.
Joel Nowak : 13:46
Now that's the pain from your colon not the pain.
John Harrison : 13:50
Yeah
Joel Nowak : 13:50
as the result of the colostomy, correct?
John Harrison : 13:52
Okay, right. There's really no pain associated with the colostomy once you're done with the healing. You get used to the routine, fairly mundane, you just have to be aware of it occasionally and take whatever appropriate action is required at the time.
Joel Nowak : 14:10
If you didn't have the pain, the belly pain, do you think that you would be able to live a lifestyle that would be more similar to what you had prior to it?
John Harrison : 14:21
Right? Yeah, well, I used to go to the gym quite often I had a trainer. Since I've had this, I have to be really careful. The core exercises and things like that because you don't want to have a hernia and further complicate things. I miss going to the gym, but recently, the gyms have all been closed anyway. So that doesn't make any difference. Try to walk a couple of miles a day.
Joel Nowak : 14:45
Just to clarify, we're recording this during the COVID-19 crisis. So that's the reason why gyms are closed because this podcast will hopefully have legs it goes way beyond this period of time. So I just wanted to clarify that
John Harrison : 14:58
Right. I wouldn't call it a good thing. But because of the last five years or so, I've basically been socially distancing since then, because of the inability to get out of the house or get out and move around as much as I'd like. Kind of used to that. But even now, it's starting to get it to me, I'd like to be able to go out and have lunch somewhere or just go to the beach and not have to worry about anything. Not that I would go in, but just to hang out and listen to the ocean.
Joel Nowak : 15:28
I think that the COVID crisis is definitely affected many of us, especially those who have been responsible and our social distancing, and being careful, and hopefully we'll, we'll see an end to this so that you can get back to the beach, The hyperbaric treatment, you did 50 treatments. And I think you said that it really did not make a difference. So you did the colostomy. What's happened with that now because you said you hope to have it reversed but it sounds as though you haven't done that.
John Harrison : 16:00
Now, and it's still, it's not a complication from the prostectomy that you lose a sphincter when you urinate. So now you have to use the sphincter from your colon, when you urinate normally. This kept going spasming and it got to the point where there would be a lot of hemorrhaging of blood and occasionally rectally, so I have to be really aware of that and take care of that. I just had an issue about two months ago, where I had a catheter in for about 40 days. That was not pleasant, because the bleeding had really picked up. I went back to the urologist and he said, we have a plastic surgeon that I use who does hyperbaric and he said, I know you've had it before, but let's try this. The idea being that the extra oxygen helps the vessels and the veins and whatever in the bladder to help heal up so there's no blood involved. So far it's been okay. Successful, I still occasionally get a little bit of blood but nothing horrible.
Joel Nowak : 17:12
You see you did the hyperbaric treatment, then you had the colosomy and now you're back in the hyperbaric tube, is that correct?
John Harrison : 17:20
Yea.
Joel Nowak : 17:20
And how many treatments have you had so far?
John Harrison : 17:23
I've had about 22 now, most insurance, I think goes for 40 differences this time now, I'm on Medicare. So I don't know what the limit is on that. But I'll go until they say you can't do it anymore. And see what happens after that.
Joel Nowak : 17:41
You have seen an improvement at this point.
John Harrison : 17:44
Yeah, I have, I can notice things are a little better. The side issue with having the catheter has been having incontinent problems now, for I'm really just running through Depends, the pads and the diapers, and it's like every two hours, it gets to be ridiculous after a while,
Joel Nowak : 18:07
That does not sound pleasant.
John Harrison : 18:09
No, the doctor's suggestion was I go back and redo the Keegle training you get after you have a prostatectomy and put an electrified egg up your rectum in teaches you to help stop the flow. However, with the problems I have still getting anything anywhere near that area is very uncomfortable. So I don't know if I can go that route or not. We'll see how it works out.
Joel Nowak : 18:36
Right. So, right now your plans are to continue with the hyperbaric treatment as long as insurance pays for it and see where you go from there. Is that correct?
John Harrison : 18:49
Yeah, that's the plan right now.
Joel Nowak : 18:52
Would you share a little bit, John about how you feel about all this because this has been a pretty terrible journey you have gone on.
John Harrison : 19:02
Yeah. What can I say? I have a high tolerance for pain in a very patient. I guess it comes because I use like fishing a lot. I have the patience and it's the only thing I can do is what I can do. I can't change anything. And just try to take it one day at a time. See how it works today, see how it works tomorrow. You can hope that in X amount of time things will be this way. But I really don't plan much more than say a few days out. Maybe a week just for scheduling and things like that, but the rest of it you just got to take it as it comes.
Joel Nowak : 19:40
You do know that your story is an exceptional story. It's not what we usually see. But given your experience and given what you do know that it is an unusual story. What would you say to someone who had a prostatectomy and their PSA was going up their doctor said we need to do radiation?
John Harrison : 20:03
Again, it depends on your options. If you're in an area of the country or where there's not many other urologist or options available to you, if you don't have an oncologist who says, well, let's try hormones, I would, knowing what I know now I wouldn't have gone to the radiation, I would have tried other methods available, such as Lupron or something like that, to see if I could control it that way. I've tried that now. And I had one shot and did a remarkable job. I also just finished up a clinical trial, phase two for prostate cancer up at Mount Sinai. And the results look pretty good there too. So, my fingers are crossed. If that doesn't work, at least we know the Lupron works.
Joel Nowak : 20:53
So I'm glad you actually share that because we got so involved in your story about the radiation and the side effects, kind of forgot that you still have progressing prostate cancer.
John Harrison : 21:05
Right? Yeah, I had the Lupron shot and then the pandemic hit. I wasn't about to go into pandemic central if I didn't have to. And, I was about actually there in the emergency room about the third week in May, because of the catheter situation. And I was in the hospital for two days. And you could just sort of see the fear in the nurses faces and the doctors, everybody was like, hyper aware and keeping things as clean as possible. So, that was interesting. And then I had to go back in about a month later, because of that I had a urinary tract infection and given the antibiotics intravenously, and it's just a much more relaxed atmosphere, things were starting to look a whole lot better here in the city.
Joel Nowak : 21:53
And the city you mean New York City?
John Harrison : 21:55
Yeah. At least things are working out here so far.
Joel Nowak : 21:59
It's interesting that you can often you elected to participate in a clinical trial. How did you find out about the trial and what helped you, or why did you decide to go ahead and do it?
John Harrison : 22:12
Well, my oncologist was running to trial, Dr. O., Williams Oh, he's just a pretty amazing guy. And he'll sit and talk with you for hours. If you have questions, He will answer any question. He's up on all the latest studies. And they had gotten a grant from the Jimmy Valvano Foundation, former basketball coach who had died from prostate cancer to do this research. He was going to take a group of about 20 men, and he wanted to know if I was interested, and I said, Sure, you had to meet certain conditions. You couldn't have any bone Mets. You couldn't have any soft tissue mets anywhere. I got through that screening process. And I said, Okay, you know, I'll try Why not? It might help somebody. And hopefully it'll help me too. We just have to wait and see.
Joel Nowak : 23:01
So when did you complete the trial and what's going on with your PSA?
John Harrison : 23:07
Well, I completed it last Friday. Today's Thursday following the week after. I hadn't gotten any results from the last PSA yet. They want me to come back and do another set of blood work, maybe I'll do that tomorrow.
Joel Nowak : 23:20
A week, is a pretty short term.
John Harrison : 23:23
Yeah, the idea of this trial was two leukemia drugs that have been around forever, and they're taken in half doses, and you get a needle, five days in a row. And then on the third day, they give you capsule to take for five days in a row. And you do that for one week, every month for three months. At least the idea being that it puts the prostate cancer to sleep and buys you a couple extra years, three to five years. Who knows what will happen in three to five years you could have much better things on the market by then. I figured it was worth a shot. I was gonna say if it helps other guys, why not?
Joel Nowak : 24:04
Were you hesitant to participate in a phase two, which is an early trial?
John Harrison : 24:10
You know? Yes and No, you got to put your faith in somebody, you know. And I've been to some doctors basically had to fire because they just weren't doing what I asked them or they weren't listening to what was going on. I had a lot of faith in my oncologist right now. So, we'll see how it goes.
Joel Nowak : 24:30
We touch base pretty regularly and we'll follow that up and perhaps in the future, we can do a follow up call to find out about results from the hyperbaric and also obviously, from the clinical trial and you're taking hormone therapy. Before we close John, do you have any thoughts that you would like to share with people?
John Harrison : 24:52
just don't let me scare you guys out of doing something just because it happened to me. I'm the outlier on every single procedure I've had,
Joel Nowak : 25:03
I think those are wise words. And it's really amazing that given all that you've gone through that a you can participate in a clinical trial because you're concerned about other people. And also the fact that you can give such wise advice, sage advice, I would actually want to call it despite all the terrible experiences that you have, it really reflects very, very nicely on you and who you are as a person, and you make the world a better place. And I thank you for that.
John Harrison : 25:35
Well, thanks. I tend to look at it is I'm just the one often to still stand next to me during a lightning storm. So then you'll be good.
Joel Nowak : 25:46
I'm good. I'm going to remember that although I will maybe consider being somewhat in your proximity so that I don't get hit,
John Harrison : 25:54
Right, you can, you can watch it hit.
Joel Nowak : 25:56
Yeah, well, I would I would be very sad if that happened.
John Harrison : 26:00
Yeah,
Joel Nowak : 26:01
Thank you, John,
John Harrison : 26:02
Sure.
Joel Nowak : 26:02
I really appreciated and again, I wish you the best. And I appreciate all that you are doing despite all of the struggle that you have had for other people. That just is such an amazing thing. Thank you. Thank you. And thank you.
John Harrison : 26:18
Sure, no problem. It's my pleasure. And what also I got to do I got to try something different, because obviously this isn't working. Oh, yeah, I'm always on the lookout.
Joel Nowak : 26:30
I was going to close this. But I think always being on the lookout, I think is another important statement that we always need to be on the lookout for alternatives or other things that we can do to treat our prostate cancer, and actually pretty much anything in life. So again, some more sage advice from John Harris.
John Harrison : 26:51
All right. Well, thank you, Joel. It's been a pleasure talking to you.
Joel Nowak : 26:54
This has been Joel Nowak for cancer ABCs along with John Harrison.
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