AcroTales
AcroTales
Episode 11 - Dee
In Episode 11 of AcroTales we speak to Dee from Maryland, USA. With her background in nursing, Dee paints an honest yet insightful outlook on her Acromegaly, the journey she underwent to get there and the shocking discovery she made all by herself, all told with a great sense of humour.
Hello and welcome to Acrotales, a podcast that explores the fascinating world of Acromegaly. Acromegaly is a rare condition caused by a benign tumour in the pituitary gland causing an excessive release of growth hormones. My name's Dan Jeffries, and I was diagnosed with Acromegaly in 2007. And 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 11, and I am really pleased to welcome Dee from Maryland in the USA. Dee is 56 and was diagnosed with acromegaly in 2013. Dee, welcome to AcroTales.
SPEAKER_01:Thank you for having me.
SPEAKER_00:So we start off the podcast normally with a set question is really, how did you find out you had acromegaly? So what's your story?
SPEAKER_01:So I was um diagnosed in probably 1994 with uh arthritis and treated for several years for um psoriatic arthritis, which um probably I never had um because the symptoms of my hands growing, my hands being the joints being problem were um attributed to arthritis, which is you know, when you hear hoof beats, you think horses, not zebras, and I was a zebra.
SPEAKER_00:Wow, very good.
SPEAKER_01:So um I had several years of treatment and uh in 2013 I had some dental work done by my husband, and I had a very bad gag reflex, which I now attribute to probably the swollen tongue, the swollen throat from the acromaglia. Okay. Um and while he was giving me an injection, I gagged, which is not a pleasant thing to do. And um afterwards I had some numbness on my lip, which I attributed initially to maybe he hit the nerve as he was putting the injection in.
SPEAKER_02:Yeah.
SPEAKER_01:And I'm also a nurse by training, and I don't like to go see doctors. So um I didn't follow up right away. It continued to get a little worse, but then it went away. I saw an oral surgeon of our, you know, friend of ours, and he um said it's probably just the injection, it'll go away. So six months later, and after seeing a couple other doctors for other things and mentioning it to them, they all said, Oh, it's probably just the injection. But eventually, if it got worse, you're gonna see a neurologist. So I went to see a neurologist and he did a full exam and he said, Oh, it's just uh it's just the injection. By then it had spread from the lower lip up the face, it was migrating up toward my eye. And I my husband said, No, it if I did something wrong, it should get better or worse. It shouldn't be coming and going like this, you know.
SPEAKER_02:Yeah.
SPEAKER_01:So luckily the neurologist said, let's just get a baseline CT scan or MRI to just evaluate, make sure there's nothing strange. So um on a Friday evening while my husband was camping with my son, I went to go have my MRI to, you know, not miss work. And uh as I'm laying there in the tube, the uh uh technician says, you know, a three-minute scan, a two-minute scan, one more, wait, one more, wait, one more. And I said to myself, there's a problem.
SPEAKER_00:You want me to lie still while you're doing that? You know?
unknown:Yeah.
SPEAKER_01:So at the end of the uh scan, um, the radiology place that I went to actually had a door that connected to the neurologist's office because they could then um, you know, come over and look at scans together. And he is holding this disc in his hand and he said, What are you supposed to do with this disc? And I said, Well, I'm supposed to take it, and then he's gonna call me. He's let's go check and see if there's anybody there. I'm like, it is eight o'clock on a Friday evening.
SPEAKER_02:Wow.
SPEAKER_01:Probably not anybody in the urologist office. So um he gave me the scan, and I went home and I popped it into my computer and took a look at it. And um, I did not diagnose the fact that I had um the pituitary adenoma. I saw on the scan that I had a tumor sitting on my brainstem.
SPEAKER_00:Right.
SPEAKER_01:And I actually have two tumors. Um, the neurologist called me on Monday going, Um, this is kind of not what I expected. Um, I had a um petroclival meningioma sitting on my brainstem, that was two um centimeters.
SPEAKER_02:Wow.
SPEAKER_01:And I had a about 1.9 centimeter tumor on my pituitary. So the numbness in my face was actually because the brainstem tumor was sitting on the trigeminal nerve.
SPEAKER_00:Wow. I was gonna say that the you know numbness in the face is probably not a uh a common sign for acromegaly. So uh not that I'm aware of. So wow. I okay. Was that a relief? Was it a relief?
SPEAKER_01:I was incidentally, you know, diagnosed with acromegaly, but then it made a lot more sense of all the other symptoms that I had had over the years. Um uh and it was sort of a relief, but it was also pretty scary. Yeah. The year be I I'm sitting there looking at the scan by myself at like 10 o'clock at night. Yeah. Um, so yeah, it was it was my attitude was, okay, you know, what next? How do we what do we do?
SPEAKER_00:And did they ac uh diagnose the acromegaly in that phone call on the Monday morning? Or did they just initially say you've got the brainstem one and we think you've got a pituitary adenoma as well? They I guess they told you both.
SPEAKER_01:He told me that I had both and that um he didn't name Acromagley at that point in time. He said you have two tumors. And um that my original scan was one without contrast, so then it was uh the process of finding a doctor and getting evaluated, you know, and and going from there.
SPEAKER_00:And did they so they advised you that they're benign at that stage?
SPEAKER_01:Um they said they were most likely benign, but they wouldn't know until you know the surgery.
SPEAKER_00:Right, okay. Wow, so that's quite a double bombshell, I suppose, then to to find that out. Um and had you noticed any of the common symptoms? Had you noticed the change in facial features, the f change in hands and feet? I know you mentioned the arthritis and the joint problems, obviously. Um did you notice anything else? Or did they notice anything else?
SPEAKER_01:Well, I went to my um arthritis doctor and I told her what was going on, and she said, You don't have acromagly. Your your forehead isn't bossed, you know. There's and but my feet had grown, and I attributed it to I had two children, and people's feet grow when they have children, you know. Um my hands definitely had grown, but that was attributed to the arthritis. And I had been on a couple of courses of steroids here and there, and and then I thought, well, I gained weight and I had these changes, but I can't get rid of it. Like I can't get rid of it. And it probably was all actually acromagaly, not the arthritis treatment.
SPEAKER_00:And the tongue growing as well. I mean, if you know in your gagging and things like that. So how long do you think maybe you potentially had it undiagnosed for?
SPEAKER_01:Um probably twenty-five to thirty years, because I've always had large hands. Um uh and I know that it was right before I had my daughter that the original diagnosis of arthritis was given to me.
SPEAKER_00:Okay, so sort of mid-twenties then, potentially.
SPEAKER_01:Yeah.
SPEAKER_00:Maybe even a bit earlier. Okay, so that that is quite early, and that's obviously quite a long time to live with it, undiagnosed. Did you feel that uh life had changed in those years? Did you feel did were you less energetic? Were you you know, what was your out output on life? I know when you've got kids you've got to do stuff, but had you noticed a sort of gradual decline?
SPEAKER_01:Uh not really. I, you know, I'm one of these people. My motto uh became um, I don't know if you've ever saw the movie Finding Nemo. Yeah, just just keep swimming. That was um I I didn't attribute any of that to or being tired to anything, but I'm a busy mom. I work full-time, I had arthritis. Um starting in 2008, both of my parents started having health concerns. So I didn't really think about that. I wasn't I didn't have time to be tired or be sick, so I just kept moving.
SPEAKER_00:Okay, so you've had your diagnosis, and how long was it until uh surgery? And and uh was surgery the main option for you?
SPEAKER_01:Yeah, I um my dad had had melanoma and ended up having surgery. It was on his scalp, ended up having to have a um tissue taken off and have a neurosurgeon involved to take out part of his scalp. So I initially contacted um an ENT doctor that we had used at Georgetown University and sent him my scan and said, Hey, who do you recommend I see? You know, because I trusted him. And he gave me the name of the same neurosurgeon that worked on my dad. So I made an appointment with him. Um I also got a second opinion up at Georgetown Un uh John Hopkins. Okay, um, because the neuro neurologist had actually sent me to John Hopkins. And um I got a plan from both of them. Um John Hopkins didn't want to touch the macroadenoma on my, I mean the um, excuse me, the brainstem tumor. Um they wanted to go after the macro adenoma first, and um Georgetown wanted to do the meningioma first, which we were more concerned about because it was rather large sitting on my brainstem and um was symptomatic. So um I had my first surgery in June, um, and that was uh to take out the meningioma, and then in August I had uh the macradenoma removed.
SPEAKER_00:Wow, so two months between two quite major surgical procedures then.
SPEAKER_01:Yeah.
SPEAKER_00:Uh how did that impact on you? I mean, uh did you notice big changes straight away?
SPEAKER_01:Um yeah, pretty quickly after I had the tumor taken out of my the pituitary tumor, my hands were less swollen and puffy. Um I over the time have seen my feet get less swollen. Um I've been more successful in being healthier and losing weight and getting in better health, you know, uh since that since that tumor was removed.
SPEAKER_00:Wow, okay. So it's obviously had a huge impact on your life and and turned things around to some extent.
SPEAKER_01:Yeah.
SPEAKER_00:Okay, amazing. Uh and I guess six where were you diagnosed, 2013? So six, seven years on, how you know, how do you feel now? Uh uh are you on any medication? Uh y are you in remission? Do you feel like it's over and done with?
SPEAKER_01:No, I um I had the surgery, I was put on my levels were still elevated, so I um saw um I was put on Sumatolin Depot. Um and we tried to keep my doses as low as possible, you know, because of the side effects, because of, you know, you want to keep it as low as possible.
SPEAKER_02:Yeah.
SPEAKER_01:Um and I um I was seeing a local endocrinologist, not at Georgetown University. I was seeing a doctor in the community. And I felt like he, I was his only acromagliac I found. And I felt like he was treating me based on what he was reading and research rather than experience.
SPEAKER_00:Okay.
SPEAKER_01:So after my numbers were going up and down and he was talking about potentially adding medication, but not really sure, I switched to Georgetown University endocrinology, and I actually I now see the head of the department there. Um and in um June of 2018, or the spring of 2018, my numbers were starting to go up. So um we started Sumatralin Depot and Somavert. And then um in November of 2018 I had um radiation. I had five days of um cyber knife radiation. And um, so that amazingly takes two years to have uh effect, a full effect. So I'm still on medication, but I'm on the lowest dose of both the Sumatrolin and the Somavert because I had been pushed up on both of them to the highest doses. Um and then uh we're waiting to see the results.
SPEAKER_00:So for people that don't know, what what are those uh are they injections?
SPEAKER_01:The cyber knife?
SPEAKER_00:Oh, the the medication. Yeah, the medication.
SPEAKER_01:So um somatlin depot is a once-a-month injection with a rather large needle. Right. And um luckily the insurance company um that I have will actually well they pay for it, first of all, because it's very expensive. Right. And the drug company um sends a nurse to my office to and give me the injection so I don't have to drive down to Georgetown. Okay. Um, which is, you know, that's an hour of my time out of uh once a month. Um so a nurse comes to my office and gives me the injection and he's in and out in, you know, five minutes, um, rather than an hour of my time. Um and then the somavirt is a daily injection that I take.
SPEAKER_00:Okay. And what and what side effects do you get from those, if any?
SPEAKER_01:Um I don't get much now. Um initially uh the somatulin depot would make me very tired and nauseous and have intestinal disturbances about two to three days afterwards, and then I would be okay. Um the somavirt, when I first went on that, I was very uncomfortable uh with intestinal upset, nausea, diarrhea for almost two weeks um and and pain, uh, that I actually considered whether I was going to be able to continue on it. Um but after about two weeks, my body accommodated to it and I really don't have much of any side effects from it now.
SPEAKER_00:Okay. I really like the phrase intestinal disturbances. That's a very, very classy way of putting it. And did I I this is s slightly topical, but I mean, with COVID and you know, I don't know if you guys have locked down as much as the UK did, but did that have an impact on the nurse being able to visit you?
SPEAKER_01:No, um the he contacted me. He at that point in time, um, well, early on, we our office was closed. So he came in to I met him at my office where there was no other patients, and he was able to come in and leave. But the nurse has actually been busy with patients that were being released from the hospital doing home care for other things than just my injections, or he didn't work specifically for the drug company.
SPEAKER_00:Okay. And and for those who've listened to AcroTales before, I am sure they would have heard the discrepancies or the differences between the UK health system and the US health system. Uh it's worlds apart, really. And when I attended the Acromegaly uh Community Conference in New Orleans last year, you know, it's very clear. I kind of we I think we feel kind of lucky in the NH with in the UK with the NHS and how it works. How what's your take on um you know the health system that you have and insurance and the complexities of it? Do you feel lucky in the treatments that you're getting and the simplicity of it, or do you have a struggle and a fight to get these things?
SPEAKER_01:Um I am lucky in that I have good insurance and they have covered everything. And I think the other thing that I'm lucky about is that I'm a nurse and I know how to fight for what I need. Okay. That um I feel like there's a a job opportunity that I haven't quite figured out how to do of advocating for patients and fighting with insurance companies or fighting with a pharmacy and making sure that things are billed properly um and and delivered in a timely fashion. Um I haven't quite figured that out yet.
SPEAKER_00:No, I was gonna say I am sure that would be a hugely useful service for people because I imagine it's quite a minefield to get the information right, approach them in the right way, you know, and and get the medication and the treatments that you need. And I'm uh I would hope not, but I would imagine that insurance companies, wherever possible, will not pay out. I mean, they don't really want to do that most of the time, do they?
SPEAKER_01:Or well, I manage a dental practice. The way insurance companies stay in business is by holding on to their money. Like they, you know, that so I've learned over the years how to fight um for the treatments that my patients need in my in my dental practice, as well as knowing what you need to do, you know, to get your own self-advocacy and get, you know, the treatment covered in the fashion that you're paying for.
SPEAKER_00:Okay. And and are you a part of uh any support groups uh online or in in real life?
SPEAKER_01:Um, I joined the Acromigley community only a couple years back, probably in 2017 or 18. Okay. I didn't find them right away. And when I first looked online, I wasn't really sure if it was just a drug company advertisement or if it was a real sort of organization.
SPEAKER_00:Okay. And have you found it useful?
SPEAKER_01:Yeah.
SPEAKER_00:Okay. And as and and have you found it useful from an advocacy point of view in terms of offering advice and um, you know, support for others?
SPEAKER_01:Yeah, and I think that, you know, one of the things that I was thinking about this conversation, um, it has been helpful. I feel like I can give some uh advice and some direction to people, but I think people need to also understand that my my path is completely different than your path.
SPEAKER_02:Yeah.
SPEAKER_01:And just because somebody says, oh, don't take that medication, or don't do radiation therapy, or I don't want to have surgery, surgery's not healthy for you, that may not always be the best path for you.
SPEAKER_02:No.
SPEAKER_01:And that's what people really need to remember when they're listening online to any group.
SPEAKER_00:That's very true. And I think that I think that's really strong advice, actually, is that you know, you have to filter out, uh, listen to all sides and then and then sort of take a decision. I, you know, I I find the whole social media world, I mean, I'm hugely part of it, and I I help support the UK Acromaker League group, and I've obviously been part of the Acromaker League community as well. And I think it's very, very useful for people just as first of all a place to say, I've been diagnosed, I'm I'm a bit scared, help. Uh, but then I think what you know we we kind of get diagnosed with this really rare thing, and then we have the kind of almost like a grieving process of dealing with it, but once we're through it and out the other side, it's a healing process to then give back to others and say, Do you know what? I'm here and I was in your shoes once upon a time. Right. So on on that basis then, if you were to give some advice to people that have been diagnosed the first time, what would what would you tell them?
SPEAKER_01:Uh take a deep breath. Because it's a long process and in some cases it's gonna happen quickly, and in some cases it's not, but um get another opinion and listen to both sides and ultimately make the decision of what you feel is the best for you.
SPEAKER_00:Yeah. Okay, that's very good. And and how useful or useful, that's completely the wrong word. How important were family and your family network around this time when you've been diagnosed with these rare conditions?
SPEAKER_01:So I lost my dad and my mom in my mom died in 2011, my dad died in 2012, and then I got diagnosed in 2013. Okay. So my kids were um they were fourteen and seventeen at the time. Um maybe eighteen. Um, so it it was a real roller coaster time for my family.
SPEAKER_02:Yeah.
SPEAKER_01:Um, and we had, you know, sometimes parental illnesses break people up. Some people they bring it together. And I'm one of eight children. Um and a number of them came together, helped take care, and my mom had Alzheimer's too, so that added, you know. So I had really great family support. Um the hardest part for me, honestly, was the fact that um I had to go through something that I couldn't stop my children from having to experience.
SPEAKER_02:Yeah.
SPEAKER_01:Um, you know, I I don't know if you are married or have children, but um, you know, when your kid falls and breaks his arm, you know, you'd rather have it your arm be broken than theirs, you know. But you can be there to take care of them. But now I was gonna be the patient and I couldn't take care of them. So um my brother actually flew out from Seattle to be here when I had the surgery. Um, and my sister was there as well to help take care of my kids.
SPEAKER_00:Okay. Yeah, I mean, I think having that that family network is really, really valuable. I'm not married and I don't have kids. Uh, but you know, I do have a younger sister and I do have family that have had to live with me having a rare condition since I was four years old. So, you know, they're very used to me being in hospitals and things like that. I guess they weren't used to me saying to them when I was 30, um, I think I've got a brain tumour. Right. You know, and all and all the stuff that goes with that. So yeah, I mean, uh you don't want to put them through it, but you're kind of ultra grateful that they're there to help you through it, I suppose.
SPEAKER_01:So a funny story about my surgery. My, as I said, my son, we we developed I have a very dark sense of humor to begin with. So uh sense of humor is the other thing that I would tell people, you know, you gotta laugh. There is lots of things that are gonna go wrong that are not gonna be the way you want them. But if you just dwell on the fact that things are bad, it they will get worse and they you won't be able to get through it. So I agree. Um the couple days before my surgery, and I was trying to figure out how to help my children get through this. Um, because when they were little and they had surgery, I would, you know, I'd give them a stuffed animal to have when they were there that they could, you know, they'd wake up with, you know, mom was always there, but they couldn't be with me. So um I actually brought a Sharpie marker. Do you know what a Sharpie is? Yeah, yeah. Um to the the um hospital and I let my kids uh write me a note on my arm um so that when I woke up they could be with me.
SPEAKER_00:Oh, very good.
SPEAKER_01:So both of them wrote on my arm and you know, my went to surgery, and the next day the doctor looked at me, the anesthesiologist when he came in, he goes, Oh, the nurse said to me, he goes, Did did the doctor write on your arm? I'm like, No, I let my kids. Like, you know, it was their way of leaving me a note and and it was the only thing I could think of to let help them get through it.
SPEAKER_00:Yeah. It wasn't anything offensive or you know, morbid.
SPEAKER_01:Well, no, well, that kind of when my dad was really um uh later in his diagnosis, every time he and my sister and I usually got together, there would there would usually be some sort of beverage going on.
SPEAKER_02:Right.
SPEAKER_01:So um we near the end of my dad's uh treatment, we said, Okay, dad, this is gonna be the year of you know, Pink Floyd comfortably numb. You know, like you can have whatever you want to drink. So um my son wrote on my arm, you have become comfortably numb.
SPEAKER_00:Oh, very good.
SPEAKER_01:And my children, when they were growing up, I would tell them there was no excuses. There could be explanations of what they did, but no excuses. So I told my kids when I got diagnosed, I'm like, well, now I have an ex explanation. It's not an excuse when mom does something wrong. I have two brain tumors.
SPEAKER_00:Yeah, give me a break. Yeah. Dee, it's been absolutely fantastic talking to you and uh uh really inspirational. I kind of love the very positive outlook uh that you've had towards this. And you know, most people don't get told they've got two brain tumors in the space of one phone call. So, you know, I think you've dealt with it really, really brilliantly and great resilience. So um thank you very much for joining us. It's been an absolutely fantastic episode.
SPEAKER_01:Thank you. It's been a nice um talking to you.
SPEAKER_00:No problems. And uh if you found Dee's story interesting and you want to hear other Acrotales, you should know what to do by now. Head over to acrotales.com or just do a search online where you can find the ever-expanding library of interviews, and of course, you can subscribe to the podcast so you're always up to date with the latest episodes uh via iTunes, Spotify, and your favorite podcast app. So, once again, a big thanks to D, and we'll see you next time for another acrico.