Melanoma Patient Liz Zischka

In this episode of Spotcast, I’m joined by Liz Zischka, who opens up about her stage III melanoma diagnosis and how it reshaped her life. Transitioning from semi-retirement to making her health her top priority, Liz shares the mindset shifts, practical strategies, and lessons that have helped her navigate this journey.

Currently undergoing immunotherapy, Liz is living by a powerful mantra: Do it. Do it now.

Melanoma & Skin Cancer Support Group - Melanoma Canada

Helping You Understand Melanoma - A Patient Guide

2025 inside pages MWYNTK.indd

Immunotherapy: What to Expect & Managing Side Effects

4 Ways to Prioritize Your Mental Health Every Day - World Mental Health Day

Transcript

SPEAKER_00 0:04

Hello and welcome to the podcast. My name is Emer Hagen. I am the patient support manager at Melanoma Canada, and I will be the host of your podcast. In today's episode, I am joined by Liz Jessica. Liz shares with me her melanoma journey, from a friend point an eye to mole on her leg qualified for a bike ride to make a decision around which immunotherapy drugs to receive. Liz also shares with me some helpful tips for other patients from binary setting, breathing technique, and how her new life mantra has changed her priority. We hope you enjoy the episode. Hello, Liz, and a very warm welcome to the podcast. Thanks for joining me today for our conversation. And by active treatment, for those listeners who are unfamiliar, I mean you're actively receiving immunotherapy at present. We're going to talk a bit about your journey today, Liz. And I was wondering if you could tag us back and just give us a bit of background about your life before your melanoma diagnosis.

SPEAKER_01 1:16

Okay. Well, I'm I know everybody's experience is unique, but we always like to think that we ourselves are very unique. Before this came around, I was semi-retired, uh practicing privately as a speech language pathologist with the pediatric age group, working two days a week. And I have very, very much enjoyed my work. And maybe I'll get into that a little bit later because that's one of the things that I've kind of had to grieve the loss of. And I was uh was, and I think I hope I still am, um, able to continue. I'm an avid road cyclist and um, you know, gardening and hiking. I live here in the Okanagan, so there's lots and lots and lots of recreational opportunities, cross-country skiing in the winter, a little bit of downhill skiing, but you know, leading a pretty active lifestyle and very much enjoying life. And I also live on an orchard. I have an apricot orchard, which I have leased out, but that even though it's leased out, it still involves a lot of, you know, um coordination with the person that's leasing it and what's going on when the water's turned on and off. But, anyways, all of those things are just sort of contribute to a, I think, a very well-rounded lifestyle. Um, fairly social. Enjoy, I'm kind of an introvert, but I do enjoy being with people on my terms. But I also really value my private space and um I get my energy from being in nature and having lots of um contact with nature and being outside and that sort of thing. Um, so that's kind of before the diagnosis. And can I continue? Is that okay? Yeah, absolutely. Okay, so because I'm a road cyclist, um, you know, when you're cycling in a line, it's um you see you see the person in front of you, you basically see their butt and their calves. And uh we pulled over for a rest, and one of my um, you know, cyclists said to me, you know, Liz, you've got a mole on the back of your cap. That doesn't look great. You should go get that checked out. So that was May of 2024. And so I went to my GP and he said, Yep, we better take that out. That was scheduled for the next week or so. And he did a punch biopsy, and it came back as melanoma. So then from there, I was supposed to go on and have what's called a wide excision, and that had to be done in the Kelowna Hospital, which is approximately, I don't know, 45 kilometers from here or so. And um that was the only time that I really felt like I've had to wait, wait, wait for something to happen. Um, at the time I was planning on going on a holiday to Ireland, um, I went with a group of friends and we did a walking holiday, which was fantastic. I didn't know until the last minute if I was going to be able to go because that was scheduled for the first two weekends in September 2024. Um, and I was on the you know wait list in Kelowna and can I go? Can't I go? Fortunately, my friends were very understanding, and um, I was able to go, and I'm really glad I went because the surgery in Kelowna wasn't done until November of 2024. At that point, a wide excision on the calf was done. The margins were still clear as they had been the first time, and they also, I guess at that point, they do this sentinel um uh lymph lymph nodule thing with nuclear medicine. And unfortunately, one out of three lymph nodes was um uh malignant, and so that bumped me up in terms of BC cancer, and I was referred to um, you know, the BC cancer, and I had my first session with an oncologist in January, late January 2025. So then from there, the discussion ensued, and you know, complicated sort of case history, I guess. I have an underlying diagnosis of psoriatic arthritis, which is an immune condition already. And the oncologist at that time was reluctant to start me on um immunotherapy because of the psoriatic arthritis. And um I wasn't a candidate for targeted therapy because I was BREF negative. So that put me into the surveillance category. Um, I mean, everybody in any other category is also in surveillance, but in my case, um that meant, you know, CTs, MRIs every three months, um, seeing the surgeon, seeing a doctor, everything went along swimmingly. I saw a dermatologist, tip to tail, clear, everything was fine. And then suddenly, um, very abruptly, in May of 2025, almost to the date where I noticed the first one, um, along the incision line, basically a satellite cluster of growth. And so at that point, the GP um removed a couple. They were all, they were both melanoma. I was sent back up to Kelowna to the surgeon, who basically said, Yeah, well, we can't keep removing everything here. Um, you need to, you need to start immunotherapy. So, and I think this is the part where I got involved, uh Emer, with the uh support group. Um, I was feeling incredibly overwhelmed, incredibly anxious, not knowing which way to turn. And the support group was just a lifeline, like to just I sort of feel cheery talking about this, but to see other people visually on this call that whose stories are not identical, but they're going through the same thing and in different ways. And it really, really was a lifeline to me at that point because I didn't know which way to turn. Um, so then my rheumatologist got involved and I was referred to another rheumatologist who has had experience with immunotherapy, with people already immunocompromised, like myself. And she said it flatly. She said, Well, you won't die from psoriatic arthritis, but melanoma can kill you. So basically make your decision. So I went back to the um uh oncologist, and at that point, he gave me an option for like basically presented me with three protocols, which I think that's where I was, you know, seeing the support group, and everybody was like really surprised. And I mean, they're all toxic. As a lay person, you don't really know what you're reading, anyways. You've got no experience with this. Um, I asked the oncologist which choice I should take, and he said, you know, that's really up to you. I put the toxicity levels on each one, which kind of freaks you out when you see 80% uh versus 30 versus 50, I think. And I chose, I think, the middle of the road. I thought, you know, I could go with that. And I also reached out, and this might be helpful to other people too, but I um phoned my pharmacist and asked, booked a meeting, actually, is what I did. Um, you know, they were a little bit reluctant at first. They said, we need time to research this, but we're happy to sit down with you and go through the protocols. And, you know, there's always bright lights on this journey for certain people that have crossed your path. And this pharmacist sat down with me there in the lobby. She was with me for about an hour. Um, we went through the three protocols. She spoke candidly and forthright, um, brought my whole anxiety level down. And again, the message that was reaffirmed for me, that I've had to have reaffirmed many times over this journey that I'm on, is uh melanoma can can kill you. So basically suck it up and get on with uh the treatment.

SPEAKER_00 10:42

You know, before all of this, before your diagnosis, were you familiar with with melanoma and its treatments? Had it, you know, had there been any family history, you know, the these new terms, you know, wide excision, BRAF, negative, you know, were these all completely new to you, or had you had some experience with with melanoma and cancer in the past?

SPEAKER_01 11:02

Oh, good question. I had heard about melanoma in the past because I think my dad may have had it. I think he probably had like squamous cell. So, in terms of BRAF, totally new term, wide excision, totally new term. It's really been a learning as you go kind of program. And, you know, no, like the the information that Melanoma Canada puts out is fantastic, but to be honest, at least for me personally, I've only been able to educate myself and inform myself in bits and pieces as I've gone up gone along. Because when I first started on this journey in May of 2024, um I couldn't even say the word cancer. I couldn't, it couldn't come out of my mouth. It was too scary, too, like it just made the whole thing real. Um, and like to give you an example of that, um, I was seeing a counselor at the BC cancer um unit in Kelowna, and I had a file folder, an eight and a half by eleven file folder, and I'd written on the tab, leg situation. And she noticed it as I was walking out, and she said to me, Good for you, she said. You're putting boundaries around it right from the beginning. And that's something that for me personally has really, really helped me. Like I had that wide excision in November of 2024. My sister's birthday was coming up the following week. I'd been invited up and I phoned my sister ahead of time and I said, My situation is not going to be discussed. I am there to celebrate you, to share in the joy of your birthday, to enjoy the day with everybody. I'm not having this along with me. And I have found that for me personally to be really, really helpful. Like my friends know, if I bring it up, it's okay to talk about it. But if we're out playing cards or we're socializing in some way, I want to enjoy what I'm doing, not be gloom and dooming about this melanoma. Yeah.

SPEAKER_00 13:43

That's that's really that's really amazing. Um, Liz, and fantastic that you're able to to set those boundaries on your friend and your social circle or you know, understanding of that, you know, this is you're you're leading the way and it's part of your journey. Continuing and talk me through then this. Well you went with the pharmacist, you discussed the treatment path uh plans, you made your decision on on which treatment you were were going to take, and and and where are you today then in that cycle of of treatment?

SPEAKER_01 14:12

I was incredibly lucky for the first four treatments, which included the Ippie and the Nevo combination. And basically, like every time I went in, the doctor said, Well, your blood work's quite boring, meaning it's good, right? Um, and then very dramatically in mid-November, um, my energy level dropped very significantly. And they did blood work, and it turned out that my cortisol had dropped to nine, and a typical level is 500 to 800. So my adrenals were shot, and that that has been something that has that I've had to grieve slowly, and I've really come to terms with it now, and I now have to take hydrocortisone for life because my body is no longer able to produce it. And when I mentioned this to one of the oncology doctors, he said, Well, you know, maybe you can rephrase it for yourself in terms of your adrenals have given themselves up so that your body can fight the melanoma. And that has been really helpful to me. Um, but grieving a part of your body that worked really well before this and now is kaput, it's really hard. So today, so I finished the four, the the double, the ippinevo, as everybody talks about. And I was booked to actually go in for an infusion this last Tuesday, but on Monday I came down with a cold. So that would have been, I think, my eighth infusion after the four, like after the first four. So that has now been delayed until next Tuesday, assuming the blood work on Monday looks okay. And I'm at the point now, Emer, where I've got the option of if the blood work continues to be stable, of either having the infusions done with the Nevel only, which is what I'm on now, they're calling it maintenance infusions every two weeks or every four weeks. That's my understanding. In terms of my life now, I have chosen, and it might be different for everybody, but generally speaking, on the Thursday before the treatment, which, you know, I should have had one Tuesday and I didn't, so I'm gonna have it next Tuesday. They usually phone on Thursday. The hospital phones and lets me know what time my treatment will be. And I have chosen, because this is what I need to do to make my mental health as healthy as possible. Um, anything from the hospital for me is a priority. If I get a phone call for a CT, an MRI, an infusion, a lab, the dermatologist, like anything medical for me now is a priority. And because of that, I've chosen not to work after August 28th because once I started the infusion zemer, I didn't know how I would be feeling. And I didn't want to compromise my work with my clients because it's important for me. I need to be able to give 100% when I walk into that therapy room to be with a child and their parents or parent. I can't be thinking about other things. However, during that, I call it the wiggle waggle time when you're waiting for results, where you're feeling really like I was very, very anxious. I found personally that it was very, very helpful for me to have that two days a week where I could pour my energy into something that was very positive, very affirming. It just took my mind off what I was waiting for. And, you know, I said to a friend, I would come out of, I have a home-based office, and I would come out of the room at the end of the day after having a number of sessions and thinking, I didn't think about my melanoma once. What a relief! It was a break. Um, however, once the infusion started, I just felt, no, this is where my energy needs to go right now. And if I'm not having a treatment, if I'm not at the hospital, if I'm not having tests or whatever, I want to start doing things that I can support myself mentally in other ways without feeling the pressure of preparing. I don't know if you know what speech pathologists do, but a lot of our work is preparation, getting ready for a session, meeting the child and parent where they are. It's very mentally intense work.

SPEAKER_00 19:34

Um and any anything new? Have you have you started anything new? Any new hobbies during your your journey that you you didn't do prior to being diagnosed?

SPEAKER_01 19:46

Well, it's interesting um to think about this and how we in life unconsciously start to do things that we're not even aware while we're doing them. Now, I have been a knitter off and on in my life. I think knitting is kind of one of those things, at least it is for me. Knit, knit, knit like crazy and then don't do it for months, right? And early on, when I got the first diagnosis, and again, in that time period where you're waiting, waiting, waiting and feeling very anxious, I just I needed to knit. And I like was knitting like crazy. And when I discussed it with my, because the counselor said, What are you, you know, what are you finding helps? I said, I've started knitting again. And she said something interesting. She said, good for you. She said, that's a very good way to calm the nervous system because you're using both sides of the body and you're crossing over. And I just think it's fascinating how almost intrinsically our body tells us what it needs to do. Now, I also took a and I'm this is a work in progress. I've started meditating and I took the BC Cancer through Vancouver offered a mindfulness-based stress reduction six-week program in the fall of um 2025. It was a big commitment. I learned a ton. Am I fully embracing all of this? No. Am I trying? Yeah. It's it's really a work in progress.

SPEAKER_00 21:39

Yeah. And and that's, you know, it is meditating any new mindfulness or things like that. You know, it does it's it takes practice to to be able to to you know to master them. I think it takes a very long time to master it. So to try and it's taking that box is is a good start. Yeah.

SPEAKER_01 21:58

And I just want to mention Breathing, breathing, breathing, breathing. Like I started um really working on calming breathing for sleep, like like early on in the diagnosis. And I remember when I was um it sort of comes back the nuclear medicine part, like anybody that has had that done knows it's very painful to have those needles injected around your incision site, and then they, you know, trace the try to find the lymph nodes. And I just have to sing out a praise for the very young, amazing technician that was with me. She didn't sugarcoat what was going to happen. She was honest. She said, This is really gonna hurt. You tell me to stop at any point. Like, I think she had to put like six needles around in that calf area. She did one at a time. I breathed through it. She said, Great, okay, that's one down. Like, she didn't try to trick me or sugarcoat it. It was very, very helpful. And that was really one of the first times, Emer, that I really noticed how the breathing really helps. And blood works a nightmare. And that's the other thing for me that that where I really use my breathing, you know, getting the infusion, getting the needle in is the worst part, really. Um, and the same thing with having blood draws. And the breathing is has been a lifesaver. I just look the other way and I just go into my breathing. And, you know, then they often say, Are you okay? And I go, Yeah, yeah, I'm just breathing. Like it helps.

SPEAKER_00 23:58

It does. It it really does help. And it's, you know, a big part of a lot of those techniques we use to calm our central nervous system is breathing. And, you know, some people are skeptical and think, you know, it's breathing. Like everyone knows how to breathe, and and everyone does. It's it's the first thing that we all do when we come into this world, and it's the last thing we do when we leave this world, you know. But there is different ways and techniques of how we use our breath that can really benefit benefit the body and the mind and all of those um things.

SPEAKER_01 24:30

Um, exercise is something that's always been very important for me in my life. And I was very uncertain when I started the um, you know, the uh sessions, the infusions, the end of August. And I stopped riding my bike because I was worried if I got dizzy and fell over or something on the road. I stopped going to my um strength building class at the community center. And I do regret, like I started that up again in January and realized how wonderful it was to be moving again, but how sad I was that I'd lost so much by not continuing during that time and not knowing if I'd be able to continue that time. And I guess I would have benefited from or appreciated. And, you know, I think the uh the field of immunotherapy is so new. We're all just kind of in a big Petri dish. People don't really know that the oncologists are on us, they're saying we don't know if you're gonna need this for 18 months or 24 months or for the rest of your life, and this whole uncertain thing, you know, we'd all love things to be more black and white, but my understanding is the immunotherapy at this point is very promising, but it's not black and white. And I guess I just feel very, very grateful that I'm living in a place where I can get treatment and the support that I get from Melanoma Canada and BC cancer. Um, I'm very grateful for that. Um, I wish I didn't have to access it, but that's my journey right now, and and I have to accept it and carry on. And you know, I know I laugh and I talk, and but I hope I'm real. Like none of this is easy, none of this is, you know, funny, none of this is it's it's hard. It's really, really hard. And I know it's really, really hard for other people going through it.

unknown 26:52

Yeah.

SPEAKER_00 26:53

What strategies have you learned through your your journey that have really benefited you?

SPEAKER_01 27:00

I guess, you know, there's things that we've always sort of uh for me personally that I've touched on in my life, like the breathing, the boundaries, um, and also journaling for me has been really, really helpful. And, you know, as I sit here with you, I've got my book in front of me. And um the the other thing for me is I'm the primary caregiver for my mother who's 89 years old. She lives in town here and she has early onset dementia, and I and I do this willingly, like I go to all her doctors' appointments. I'm kind of her person. So a strategy that I learned for her was I have a book and I take it to every single appointment, and then I can communicate with the rest of the family. Like, what did the eye doctor say? What did the GP say? What needs to be done or not done, right? And so, because of that, I started with the book for myself, and that is really, really helpful. And it is a strategy that I would recommend for anybody that can manage it, because when you go, there's a team that you're with, and it's so handy when you go, like when I saw the surgeon last week, and he said, Oh, when was your last appointment with the rheumatologist? I just flip my book and there it is, right? And it makes everybody's life easier, and it also keeps us all on the same page, you know. Um, so that's a strategy that I learned because of my mom that I've applied to myself, that I cannot imagine dropping or eliminating because it is being so useful. The breathing I was doing, you know, with some yoga before any of this. Um, but I've really taken it to heart now because I know it works and it gets me through those really tricky times, even that are non-medical related, even in the middle of the night. I always say, you know, the 2 a.m. when the dragons come out. The you know, the catastrophe thinking, the rumination, that no, no, no, no. Let's just get back right now. Breathe. Is it easy? No. Do I always succeed? No. But I keep trying because it really does help.

unknown 29:36

Yeah.

SPEAKER_00 29:37

Yeah. Thanks. Thanks for that, Liz. And and another thing you touched on already was was the support group when you were feeling very overwhelmed, you reached out and and you got, you know, a good benefit from that. And I'm just wondering if you could, you know, tell the listeners a little bit more of around that, what it meant to connect with with other patients who have been through a similar journey as yourself.

SPEAKER_01 30:00

Well, I guess, you know, to be really honest, I do find the support group like it's so diverse, right? In terms of everybody's going through something different, but just the fact of seeing that other people are going through this and have had things happen to them also along the way that were unexpected, like it's it's a feeling of I'm not alone. And you know, recently, as you know, we've had people come on that are just starting on this journey. And I like to think that we're all offering them a helping hand. Like we hear you. I think that's the main message. We hear you, we see you, we're here for you. Like it's it's such a wonderful, wonderful thing to have. Um because you know, and this is no fault of the medical system, but everybody's in their little tower of expertise. And I've had a couple things have come up. Well, you better talk to the endocrinologist about that, you better talk to the oncologist about that, you better talk to the surgeon about that. And it makes it difficult as a patient, like because you're trying to put everything together and make a decision that's going to be in your best interest.

SPEAKER_00 31:35

Yeah. Do you have one piece or any advice for for fellow patients or people who've been maybe just newly diagnosed a is there anything you wish you maybe learned a bit earlier on your journey, or anything that you thought, yeah, I I need to pass this wisdom on?

SPEAKER_01 31:54

A diagnosis like this changes your world. It changes how you look at your mortality, it changes how you look at your relationships, your children if you have them, your partner if you have one. It changes how you see the world totally. Um do what's right for you. Do what makes sense to you. You are the one that is important here. If you want to talk about it, talk about it. If you don't want to talk about it, talk about. Don't talk about it. Um if you want friends to come in and help you with gardening, ask for it. If you don't want it, don't let it happen. Speak up and do what's right for you, is I guess what I would say. Um and everybody's everybody's different, you know, and what knitting works for me, it may not work for another person. Um it's it's so individual. And I guess I just, you know, I feel really strongly about that about listen to yourself. I know a lot of people wouldn't have worked when I was working. For me, it was helpful. It was the right thing at the right time. And when I discontinued my practice, when I said to my clients, I explained what was going on, and I said, I will not be doing further sessions. Please find a different therapist. I'll let you know if I come back. And they all were incredibly understanding, right? But it's a time in your life to put yourself first. This is my new mantra for my children, for anybody that debates anything, right? Do it, do it now. I mean, we always have these things, if you know, if I could do it again, whatever.

SPEAKER_00 33:50

Yeah.

SPEAKER_01 33:50

And I don't want to, and I'm not the kind of person that lives life with regrets, but travel, do the things you want to do, make it work within your lifestyle. Our generation of kind of waiting for retirement. I mean, I did some traveling, but some, you know, this kind of diagnosis, you see the world differently. For sure. You know, one of my kids will phone and say, I'm thinking of like can be something minor, like I'm thinking of taking a pottery class. Do it. Do it now.

unknown 34:26

Yeah.

SPEAKER_00 34:27

Love it. Thank you so much for taking the time to share your story um with us today. I know it's not always easy reliving your story, especially whilst you're, you know, you're very much in the midst of it. Um and we wish you all the best for the the remainder of your treatments, however, they unfold if it's two weekly or or four weekly, giving you a little bit more freedom of your of your life back. Hopefully that works uh in your favor. And I know your words will, you know, will help and they'll resonate with so many people who are listening with this. So thank you so much for sharing your story with me today.

SPEAKER_01 35:05

Well, thank you. I think it's a wonderful, wonderful thing to do a patient where the patients are talking, because then people really um hopefully, hopefully this will support other people that are going through this journey. Thank you. Thank you, Liz.

SPEAKER_00 35:29

Thank you for listening to the podcast. We will be sharing new episodes the first Thursday of every month. So please be sure to like and subscribe wherever you get your podcasts. For more information and support, you can visit our website at melanoma canada.ca and you will find links to today's episode in the description below.