AcroTales
AcroTales
Episode 9 - Larry
In Episode 9 of AcroTales we speak to Larry from Nebraska. Larry paints an insightful picture of the difficulties faced when you're diagnosed with Acromegaly and - whilst life was tough - he was able to use his positivity and spirituality to get him through.
Hello and welcome to AcroTales, a podcast that explores the fascinating world of Acromegaly. My name's Dan Jeffries, and I was diagnosed with Acromegaly in 2007. Now in each episode of AcroTales, I'll be talking to fellow Acromegalics from around the world about their journey with this unique condition. It's episode nine, and I am really pleased to introduce Larry from Nebraska. Larry is 59 and was diagnosed with Acromegaly. Well, I think we'll he'll tell us, because I haven't got that in my notes. So he'll tell us in a minute. Larry, welcome to Acrotales.
SPEAKER_02:Thank you, Dan. It's good to be here.
SPEAKER_03:Yes, and uh we uh uh not uncommonly we've had some small technical issues with microphones and sound and everything, but patience has won the day, and we are finally here chatting to each other. So it's it's really, really good to hear from you. You bet. Um yeah. Let's uh let's go back to the beginning then. So I always ask people this you know, what were the first signs for you that something wasn't right? And how was your acromegaly eventually diagnosed?
SPEAKER_02:Gosh, there were so many things, so many things were wrong. It it started as a teenager, and um the signs became more pronounced and more numerous as uh things progressed. I was not diagnosed until I was 45, and the tumor was quite large by that time. It was a macro or large tumor by that time. It didn't get into the optic nerve, but uh it had been been around long enough to where I had all the classic symptoms, the numbness in the extremities, uh, joint pain, tissue pain. Um, and I'd had all of those since I was a teenager. Um, they just kept getting worse and worse. Um along with it came the um the emotional aspect of it, the extremes, um, which acromegaly is a disease or a disorder of extremes. And I had all of that. Um it was kind of sad that those uh you know, my behavior and all at home around my then wife and three kids, um began to I was uh I acted out uh emotionally to an extreme that caused them all to leave, unfortunately.
SPEAKER_03:Um the acro rage, that's what some people determine it as. Would you is that the label you would give it?
SPEAKER_02:My grandmother called it not controlling my temper. In um I guess in faith it'd be called a sharp tongue. Um my wife just simply calls it you're screaming again.
SPEAKER_03:It's very hard though, isn't it? Because when your when your hormones are on overdrive and especially um uh it it plays havoc with you and and and so you obviously were undergoing these strange changes. Did you try and get a diagnosis from a doctor or physician, or did you just learn to live with it?
SPEAKER_02:You bet I I tried for diagnosis after diagnosis, and uh from back in uh a teen being a teenager, still living with my parents. Um I bet you I've got a list of 20 different um psychiatrists and and psychologists that I've seen through through the decades. And uh I was misdiagnosed always. Um time after time after time. I got tired of going and I quit doctoring because of that.
SPEAKER_03:It's terrible, isn't it? And it's it's that diagnostic odyssey, which we referred to on this show a few times before. And uh we've mentioned that obviously the sooner that the acromegaly can be diagnosed, uh the better outcomes you can have. So obviously, yours took, let's say, decades, and you ended up with a macroadenoma, so you had a large tumor in your pituitary gland. Had you started to notice particularly the physical changes in your appearance?
SPEAKER_02:Um, they were so um what's the word? Um I can't think of the proper word, I'm sorry, but uh they were so slow in their presentation um over decades. No, I I really didn't. I mean, I knew that my feet were getting bigger um from 20 from age 28 out till age 45 from size US 11 to 16. Yeah, I knew that in and yes, I had to have my wedding ring resized twice and just lost interest after that. Yeah, all that stuff. But no, I didn't because I didn't notice it.
SPEAKER_03:No, and you that there's nothing that would ever inside you say, well, you may think this is wrong or or not right, but nothing's gonna say to you, well, it must be because I have a tumor in my pituitary gland, or you know, I must have a this strange condition. You don't put two and two together, I think. You just maybe accept you're getting old, you're changing, and that's exactly what I experienced. Right. And and so how did you lead up to your actual diagnosis then? How did that come around?
SPEAKER_02:Um well I my skill set professionally was quite narrow. I did so much for so many. And I put that first. Um, so with the family departing, sorry about that, with the family departing and then the business departure and all that, I was having a tough time psychologically. And a friend of mine um at work, um, she said, you know, I went to a counseling session that our employer provides at no cost to you. And I said, Yeah, I know the drill, I've been through all that stuff, but I'll try once again because this is not I don't, I'm not right. I knew that.
SPEAKER_03:Yeah.
SPEAKER_02:And um, so that's what led to the diagnosis quite by accident.
SPEAKER_03:Um so often it is, and and what, so a counselor uh psychologist. Psychologist, okay.
SPEAKER_02:Right, right, provided for things, you know. Employers quite often provide those um as a tool against suicide, um, against violence happening. And um the corporation at that time that I worked for did so. I believe it's called EAP, can't remember what that stands for. Um, but I went with it. You know, the friend that I had was close, was very caring, very loving, and I credit her for the diagnosis because she set me on that path. I listened. And um so I'd been through the drill of of trying uh psychotropics. Um I'd been through um the psychological counseling um diagnosis, that kind of thing. I knew what it was all gonna add up to. I just thought I'd do it again, and I did not. I had wonderful health insurance at the time, and still do, thank goodness. And um, I was able to get into an internist, a specialist, and he noticed it in five minutes. Um and uh took a blood test the next day and detected the high level of growth hormone in IGF one. Um detected those that very next day.
SPEAKER_03:Wow. And so was that a huge relief for you? Was that I know you're a religious man, was that and I don't mean this flippantly, was this like an allelujah moment? Was it like, thank you? I I have a name that I can put against this now.
SPEAKER_02:I hadn't put that two and two together yet, but in time, yes, it did come to that. I mean, I knew it was, I I felt, according to my beliefs, that yes, he was care that that God was caring for me, and this was part of that care, this was the material into that care. I didn't really realize what it all meant. Um not at all, not at all. It was, I think, just like anybody, we're all too caught up in the moment. It's like, oh my god, I've got a tumor, and these people are paying attention to me, and they're telling me that I gotta get something done, and we gotta have the surgery, and I'm seeing all these practitioners, and wow, and it was a bit much.
SPEAKER_03:It really was it is it is a sort of overload of information, isn't it? And um Yeah, yeah. And then of course there's the uh the promise, as it were, of potential surgery. So I assume that you uh that was what was lined up for you, the transphenoidal surgery?
SPEAKER_02:You bet. Um I think my own.
SPEAKER_03:Can I ask, did they sorry to interrupt, did they give you an indication as to how big your tumour was? I mean, I know you said it was a macro, so that's over two centimeters. Did they give you any any further information about that?
SPEAKER_02:It was 20 something, and I don't remember it's been so long ago. Um it was pretty large. Okay, I I'd suppose what I do remember it was the size of a quarter by one dimension and the size of a nickel um looking at it the other way.
SPEAKER_03:Okay. So uh a reasonable size then. So obviously they had a lot to work with. Right. Um and uh did they get you in for surgery pretty soon after your diagnosis?
SPEAKER_02:Diagnosis was October 16 of 2006. I even remember the date, and the surgery was January um 10 of 2007.
SPEAKER_03:Okay. So pretty good. I think within a sort of three-month period. Yeah. So they would have done your MRI scans, various tests. Yep. Uh, and sort of prepped up for it. And of course, over Christmas it's a difficult time. And and how were you with I mean, had you ever had sort of big surgery before? Was this your first time under the knife?
SPEAKER_02:I mean, I'd had minor surgeries before, but nothing like this. Nothing at all like this.
SPEAKER_03:Okay. It's quite scary, isn't it? I think. Um, bravado, you can yeah, you can have the bravado uh uh beforehand, but I think once you're on that bed being wheeled in, reality sets in, doesn't it?
SPEAKER_02:Yes, yeah. When I sat on the instead of laying down um in prep to go into surgery, and the port was being put in and so on and so forth, and I didn't want to lay down. I sat up and uh the gal, the nurse happened to be, you know, I was an hour away from home in a big city. The nurse happened to be somebody I knew, and she missed, and I had a blowout. So I had this golf ball size appendage coming out the side of my arm, and it kind of bothered me. And she looked at me and I was turning white. She says, You know, you should lay down because if you fall off the table, I'm going to move out of your way. You're too big for me to catch. Um, I still laugh at that and I said, Well, maybe we ought to rethink this. Should we just tap it and I can sell it? And, you know, I need the money, really.
SPEAKER_03:So you had your surgery and uh you wake up. How did you feel post-surgery?
SPEAKER_02:Um, well, at that point in time I had been through a really nasty divorce. Um I was pretty w excited, I was pretty disturbed. I um was angry that I was there and that my family wasn't. I was by myself. And I had mom and dad there, and that was it. And my boys, you know, they were keeping track of it, my two older of three children, um, but they were playing video games and working, you know, and um they weren't there. Uh they came to visit, and I was angry. I I really was. Um because in all for all practical purposes, this wasn't gonna be um a big change in my life. I just wasn't gonna have the numbness. Um I was going to live past you know 45 years of age. And so it wasn't gonna fix any of the other, the big problems in my life. So I was angry and um I just had to settle down and deal with it.
SPEAKER_03:And did you notice and so I was gonna ask, what about the I appreciate the emotional impact of that, and that's that's difficult. And hospitals can be a lonely place if you don't have people around you visiting or supporting you. But how did you did you start to notice any of the physical changes, you know, post-surgery? And did they give you an indication as to how successful they were in removing the the tumor?
SPEAKER_02:Yes, the uh um the surgeon felt that he got 98% of it. And really, that's that's a touch thing that I you realize they're going in the procedure, they're going in from the front of your face through the sinus cavity into this tumor, and there's no dotted line on that tissue. Uh, it's strictly by the touch of the end of their probe and how much resistance there is. And the tumor feels a little bit squishier than the healthy um tissue of the pituitary gland. So it was kind of now. I think back on this, and he says, Well, I got 98%. Okay, how can you be sure?
SPEAKER_03:So I was just gonna say, when you think about the skills of the surgeon and you know the complexity of trying to remove uh this mass from such a delicate area, I think it's amazing that they get anything out. Oh no, and and you come out the other side alive and feeling okay. Yeah. So 98%, I think, is a good result. I mean, did they then advise that you had residual tumor and that you would probably need medication? Or was this a case of, well, let's see how you get on and then we can decide from there?
SPEAKER_02:It was a case, let's let's see what happens. In uh four, six months, seven months, I was okay. And then we did another blood test, and I had uh some elevation again in growth hormone and uh not the IGF this time, but I did have in the growth hormone uh about I'd recovered about half of where I was. Wow, okay. So I started on sandastatin uh monthly injections and I stayed there for two and a half years.
SPEAKER_03:Okay. And they helped?
SPEAKER_02:Oh, absolutely. It shrunk the tumor down. Um it doesn't look right when you image the the pituitary. It's not the it's not what a medical professional will look at you and say, Oh, yeah, that looks right. There's a hole in it. But it looks like what they're looking for, so it did shrink it down.
SPEAKER_03:Okay. Well that that must have been a relief. And and so you were on that for a a couple of years post-surgery. So that takes us up to what? About 2000 and sorry, my maths has gone all wrong.
SPEAKER_02:About 2010.
SPEAKER_03:Okay. And so what was the next stages then? Did you find that it it was settling down, it was manageable, you could live with it, or did did did it progress from that point on?
SPEAKER_02:I didn't know. Um and I really wasn't uh I really wasn't uh the all the joint pain and the tissue pain that I was going through that continued to get to grow, and I wasn't paying attention to that. But I didn't have the numbness. And um a lot of the other things did decline. Um I together with the endocrinologist, we decided to stop the sandostatin and see what what happened. The blood work, chemically, I was in remission, and that's about it.
SPEAKER_03:So uh where are we now? 2020. Uh we're in a very strange time because they're right in the middle of the coronavirus epidemic. Uh looking back on that time and you know, looking back at the last 10 years, having you know lived with that condition and lived with it for many years now, how do you feel, how do you feel where you're at right now? Do you uh uh do you feel in a good place, a better place? I know there's still work to be done. Um, you know, and I and I mean kind of, I guess, emotionally and also uh sort of physically and sort of medically, I suppose, in terms of managing the acromekally?
SPEAKER_02:Well, the uh we uh I remarried and I'm Catholic by faith. So we had to go through both my current wife and I, before we were married, we went through quite a painful, extrapolated process, but we got through it. We got married, we found a house back out in the country um to move to that worked for us financially, and it was something we both liked. And so that you know, material, we were blessed. Um, we got ourselves out of the financial soup that we were in and gained health that way. Um, but I found that um my knees were super painful, um my hip was painful, the joint issues and the tissue issues were steadily getting worse. And so that that uh led me to I stopped working, uh, applied for disability here in the States, and was granted um benefits under that program. And I guess for a couple years now I've taken um oxycodone, um, which I take instead of twice a day as it's meant to be, I take it three times a day. I need actually four, but I'm resisting. Um what does that do?
SPEAKER_03:Is that for your is that for your joints?
SPEAKER_02:Or yep, for pain. I've had both my knees replaced and really just you know, it's it's tough. Um if I use it, if I use my body, um, let's say I'll and I'd love to work, if I go do some work, like work out the yard or something carpentry skill utilizing that. Um if I'm working for four or five hours, six hours, and pretty much dead for a day, maybe two days afterwards.
SPEAKER_03:Yeah. I I think that's not uncommon for people, uh especially those who have maybe had acromegaly um or were not diagnosed for quite a long time. The joint pain and the sort of cartilage issues and the tiredness and the and the fatigue seem to be common factors in sort of dealing with this. Even once, you know, even if you're managing the tumor relatively well, it's under control, um, those side effects seem to be seem to be the big ones for a lot of people. And of course they're very hard to combat. And, you know, the truth is the older you get, that naturally comes with age anyway. So you're kind of doubling it up, I suppose.
SPEAKER_02:Right. Um, I've always called this disease the boy who cried wolf disease. Because you're getting it sooner than what everybody thinks you should. And does it really it's really not visible? And is it really just making it up?
SPEAKER_03:Um that's very good. Yeah, I mean it's true. It's a hidden condition, isn't it? And so it is the hidden conditions are always and people go, oh, just come on, you're all right. And you're like, no, really. You don't look that bad. Exactly. Exactly. And it's very, very hard to sort of justify it and and really reiterate it. And then when then people find out they're like, oh my god, I'm really sorry. I didn't I didn't know. You can't make them feel guilty for that. They they knew less than you did, and um yeah, it's a very strange situation.
SPEAKER_02:Yeah, it's a catch-22. Well, how are you doing? Uh I feel like shit. Thank you. But you know, you can't do that. You've got how you doing? Well, you know, I'm doing okay. You've got to answer that way. It's because you don't want to make people feel bad.
SPEAKER_03:No, and your role, I mean, um I I I know you're a religious man, and do you I what I you have to excuse my ignorance, but what uh what is your role within the Catholic Church? Do you have a particular role?
SPEAKER_02:Um, I guess formally I'm a liturgist. I sing. Um, Julie and I, that's how we met. We've got quite a story in that, uh, which we don't have time to unfortunately dive into here. Right. But we uh she has sang uh all her life, and it was on my bucket list uh when I started over again before diagnosis. And I joined a choir and started to sing, and it's something I dearly love. Um, other than that, I just I'm um no different than anybody else. I take my faith seriously and I try to do things that I feel that we're called to do, such as help people that are in trouble, you know.
SPEAKER_03:Yeah. And I and I think this condition actually makes advocates of all of us. Um, you know, and I think the growth in social media, Facebook and Twitter and the likes, we we are able to support people from around the world um and and share our wisdom. And uh, you know, in whatever small part that may be, and for some people they don't want to do that. I think, you know, if you if you're through the condition and you're out the other side and you want to carry on and lead a normal life, that's absolutely fine. But you seem tend to find a large majority of people want to give something back because they receive some help in some small way on their journey. Um, and that's where I think you know try uh campaigns like this are really, really invaluable. And I and I met you at the um Acromegaly conference in New Orleans last year. And um I think those situations and and events are invaluable to people to know that they're not alone and they can talk to others and and get information and feedback and support from people who have been through this very rare situation. And for some people, it's the first time they've ever met or talked to anybody with Acromegaly. Right. Which must be quite an experience. How how was that for you? Was that your first time in a room with a lot of acromegalics?
SPEAKER_02:Well, it was. Um, well, I guess it was the second time actually. Um, and then in between that time and and the time before, um then I did reach out to an acromegalic that is close by here. And a couple of them actually, we don't keep in touch. I find it surprising, but that's okay. Um, I talk too much, I think. I don't know. Uh I do, I enjoy the interactions and uh I do enjoy life. I do. Even though it's painful and even though it has its drawbacks and so forth, um, it's good to be here.
SPEAKER_03:Well, Larry, uh I think on that wonderfully positive note that it's good to be here. I'm gonna say thank you very much for sharing your acro tale. One I think that's been a difficult journey, uh, but uh one that I I get the sense that you're at ease with and um you can see all the positives in it, although there have obviously been challenges and difficulties along the way. So I am truly grateful to you for uh sharing your story so openly and honestly with us.
SPEAKER_02:Thank you. And we should do a follow-up or two.
SPEAKER_03:Yeah, I'm sure we we'll do our own podcast series.
SPEAKER_02:You bet. And and I gotta say, I really appreciate the effort that you put into this. This is awesome. Um, and as well, the organization that brought us together, the same with what Jill does in running the show and everybody that helps her out and and all the things that we do for each other. That's it's just awesome. It really is.
SPEAKER_03:Yeah, it is. It's a it's a good it's a good community and uh it's very, very supportive. So thank you very much. I appreciate that. Yeah, very good. If you found Larry's story interesting and want to hear other acrotales, you should know what to do by now. Head over to acrotales.com where you can find the ever-expanding library of interviews, and of course, you can subscribe to the podcast to receive the latest updates via iTunes, Spotify, and all the other usual outlets. So, once again, I just want to say a big thank you to Larry for sharing his Acrotale, and we'll see you next time on another AcroTale.