Interview with Sue - Turning Burdens into Blessings

Transcript

SPEAKER_00 0:00

This little light of mine, I'm gonna let it shine. Hello and welcome to Shine. I will say it's a little difficult for me to sing that today because I am sitting with Sue, my dear friend Sue, who is a very accomplished uh musician, um songstress, um, all the above. So she is nicely smiling at me while I just sing my introduction. Um I typically will let uh people introduce themselves, but uh I needed to give her just a little bit of introduction. Um I met Sue when it was Our Town, right?

SPEAKER_02 0:47

Yes.

SPEAKER_00 0:47

And our town helped with the music uh production, and I was a stage manager and the thing I loved about Sue is she just had this gentleness about her, and she always had this smile, she always had a kind word, even if maybe it wasn't the best situation, she always seemed to have this uh positivity and patience about her, and I think I was initially drawn to that um sweet spirit. So thank you for sitting with us, Sue. Thank you for asking me. Well, I've been asking you for a really long time, so let's be upfront about that. So Sue has had a particularly um daunting journey these last few years. Um so I was hoping that we could talk a little bit about that. Before you start that though, I want to know when when was your spiritual birth? Like when do you feel that you truly first felt and heard God?

SPEAKER_02 2:04

I am a cradle Catholic, like our dear friend Melissa, who you interviewed a couple of months ago, and the Holy Spirit has always spoken to me. I tend to think of the Holy Spirit as the female part of the Trinity. The nurturer. Exactly, exactly. So throughout my life, it has been the Holy Spirit that I have uh relied on to guide me.

SPEAKER_00 2:41

And so how do you hear the spirit? Do you hear the spirit through music? I know that's your special gift, but how do you hear the spirit?

SPEAKER_02 2:49

I do, but I also hear the spirit speak to me throughout the day. I start my day actually in meditation and contemplative prayer.

SPEAKER_00 3:04

I love that word. Contemplative prayer. Okay, so explain to me what that means for you.

SPEAKER_02 3:11

It's about thinking. Contemplate thinking. Um I think about what my day is going to be like. I think about the help I'll need during the day because I will.

SPEAKER_01 3:30

Yeah.

SPEAKER_02 3:31

And that is something that I would say is new since my diagnosis.

SPEAKER_00 3:40

And let's let's let's talk about your diagnosis. Now, for those of our listeners who don't know you, what exactly is your diagnosis?

SPEAKER_02 3:51

My diagnosis is stage four ovarian cancer.

SPEAKER_00 3:56

And how long have you I mean that's not a diagnosis that people have for a long period of time?

SPEAKER_02 4:03

Correct. I've had it for two years and three days. Love that. July 8th of 2024. So it's your anniversary? It was on Wednesday. So how were you first diagnosed? Um, I had had symptoms of ovarian cancer, not knowing what the symptoms were. But I had had symptoms and had related them to my gynecologist. And it was believed that they were not serious, that my urinary urgency was um perhaps related to my pelvic floor, and I was to age, you can say it. Age, body habitus. Um and and the problem is the ten signs and symptoms of ovarian cancer are very generalized and relate to so many different things. Fatigue, bloating, constipation.

SPEAKER_00 5:10

Um if you're a menopausal woman, don't we all have that? Yes.

SPEAKER_02 5:16

I mean that's yeah, that's just what it is. But the fatigue was the thing that was probably the worst for me. The year after we did Our Town. Um we did the Carol King musical. Beautiful, wonderful. It was beautiful. It was a fabulous cast, it was just, it was an inspiring show. And I would have trouble walking from my car in the parking lot to the front of the hogel and up the stairs. And I thought something is wrong. And I thought, oh, I'm just um out of shape. I need to exercise more. But it progressed, and I started feeling bloating, not realizing it was ocytes. Wow.

SPEAKER_00 6:13

So And that's fluid on your belly for you non-medical people. Yes. But go ahead.

SPEAKER_02 6:18

Fluid on your belly. So um I awakened on July 8th, 2024, and I couldn't breathe. Lying in bed flat, and I could not catch my breath. So I hopped in the shower, drove myself to Memorial ER, and within an hour I was told that I had tumors throughout my head. And most likely ovarian primary site.

SPEAKER_00 6:53

So you probably woke up that morning thinking, I must have a cold. Maybe I have pneumonia. Maybe, you know, we've all lived through COVID, right? I mean, we're I I couldn't imagine the unpreparedness of those words.

SPEAKER_02 7:10

I was shocked. I would have to say, I think I was in shock because I it wasn't anything that had ever entered my mind. Cancer, as so many people say, is something that happens to other people.

SPEAKER_01 7:27

Yeah.

SPEAKER_02 7:27

Not to me. I kept every annual appointment, I did every colonoscopy every few years. I I did everything the way I was supposed to. I ate green leafy vegetables. I just tried to do everything right. But here I was, stage four.

SPEAKER_00 7:51

And were you still by yourself in the ER at that point? Or was it? Oh, that breaks my heart.

SPEAKER_02 7:58

I had texted him and told him the situation. He said, I'll shower and be there. By the time he got there, they had already told you. I had already told you. So then how do you tell your son that? I simply spilled the words out of my mouth. Um, he and I have a very close relationship. It was just the two of us from the time he was nine and a half. And we we are blessed with a beautiful relationship. Yes, you are. I can't ask for anything better. Um but he sat with me and you know, con started contacting family members, and then an angel walked into the room. And who would that angel be? That would be Dr. Nora Muxura. Yes, yes. And she walked into the room. I had never seen her in my life, this gorgeous woman with long flowing red hair, which I had in my younger days. And she smiled and she said, I've been assigned to your case. And I felt like, as I say, my guardian angel had walked into the room. She immediately put me at ease. She said, We're going to admit you, which happened. And then she took care of me. They did uh parasentes, which is removal of the fluid from your end.

SPEAKER_00 9:44

Which is a big needle. I mean, that's a big needle. That's a big deal.

SPEAKER_02 9:48

Big needle in your side, yeah. And um, you watch the liters of fluid drain off, but the relief is instant. So it was worth it. I had it done three times over the course of about six weeks.

SPEAKER_00 10:05

So when that diagnosis came and Dr. McZura was taking care of you, when did the realization or the conversation about you are probably not gonna live much longer? When when did when did that happen?

SPEAKER_02 10:25

That happened shortly after the diagnosis. I carrying the roof was the first day that I saw, or the second day that I saw, but I had worked for the Social Security Disability Program for almost three decades. So I was aware that stage four is essentially a death sentence. Yes.

SPEAKER_00 10:50

Yes.

SPEAKER_02 10:51

Although a recent article in the New York Times said that stage four cancer, which was considered a death sentence, is now considered a chronic illness. That's incredible. Because of research, because of scientific research, and the wonderful scientists we have working on cures for cancer. And earlier diagnosis? Early detection, which in ovarian cancer is very rare, unfortunately, because you don't feel the symptoms or you don't have the symptoms until it's usually stage three or four.

SPEAKER_00 11:36

So when you've got that part of the diagnosis and conversation, how how do you contemplative pray with that? I mean, how how do you uh talk to God in those moments?

SPEAKER_02 11:54

I asked why a lot. A lot. And my initial reaction to the whole thing was, I don't want to go through it. I had watched my sister on her cancer journey, and I will at this time say I speak about a cancer journey. I'm not fighting cancer, I'm not a cancer warrior, I'm not in a battle with cancer. That to me conjures up conflict and unrest, and it works for some people. I don't fault them at all. Use whatever terminology works for you, but for me, it's journey with cancer. We're in this together. We're in this together. Okay. I know that although my surgery a year ago was successful and she got everything she could see.

SPEAKER_00 12:58

That's incredible.

SPEAKER_02 12:59

I know that there are cancer cells in there. With stage four ovarian cancer, there's a 95% chance of recurrence.

unknown 13:12

Wow.

SPEAKER_02 13:13

95%.

SPEAKER_00 13:14

So how how do you sleep at night? How do you wake up in the morning and not say, is today the day?

SPEAKER_02 13:24

I have a very serious diagnosis and I live every day to its fullest. My days are filled with lunches with friends, um, going to support groups. There are some wonderful support groups here in town. Um in my calendar, I'm booking people out two weeks right now. Well, everybody wants to hang out with you. Much more than I did before my diagnosis. I everything, once you have a diagnosis, is pre-diagnosis and post-diagnosis.

SPEAKER_00 14:04

So a different perspective of those days.

SPEAKER_02 14:08

You know, it used to be, is my house perfect? Is my makeup perfect? Does my hair look right? None of that matters anymore. My priorities are so different. It's have I been kind to someone? Is there someone in my circle who might benefit from a call today? Wow. Or a text today.

SPEAKER_00 14:34

And and correct me if I'm wrong here, but what I'm kind of hearing is this journey with cancer has been a blessing in your changed perspective of your day and your people. It did I hear that right? 100%.

SPEAKER_01 14:52

Wow.

SPEAKER_02 14:53

My priorities are not the same, and I don't look upon it as a curse anymore. I don't really know the curse is even the right word, but the why me thing was really big. But I look upon it as I have a disease.

SPEAKER_00 15:15

And how how let's talk a little bit, because off off camera we talked a little bit about death. Yes. And you actually, I believe Lee Steiner was your end-of-life doula. Yes. Um what kind of experience did you have with her in that process?

SPEAKER_02 15:38

That was the most amazing thing to me. That was that was an intervention of a spiritual nature. It was the second day of my hospitalization, and my son said, I I I would love to be here with you all day long again, but I have to get back to work. And I said, I understand completely. Please go.

SPEAKER_00 16:02

His son, your son had this amazing restaurant that we would always go to. Um, so work was like real work, like I am spending 12, 15 hours weekends, I have staff. When somebody doesn't show up, I've got to work. So it I just want to clarify that for our listeners. Right.

SPEAKER_02 16:22

It isn't a job where you get sick days. Right. Exactly. You don't have FMLA. No, you certainly do not. Very well put. Um, and as he was leaving, he said to me, Call Lee. Now he has known Lee because Lee and I did shows together for 24 years. But I mean he didn't know her especially well. He knew her to see her and to speak to her, but I don't think they'd ever had any intense discussions. And so I said, Okay, but I don't understand why I'm calling Lee. I just saw her when I did the show a few months ago. So I called Lee. I told her the situation. She said, I'll be there in 20 minutes. And she floats into the room as she always does. And she um sits down with that beautiful smile and presence about her that is ethereal, it's the only way I can describe it. And I said to her, I know that you have retired from her last job uh in mental health. And I said, How are you keeping yourself busy now? Because Lee is someone who is always doing things. And she said, Well, I did some research and I became an end-of-life doula.

SPEAKER_00 17:50

Wow.

SPEAKER_02 17:51

She had gone to the University of Vermont School of Medicine and received her certificate. And I said, And how many people have you helped on their journey? And she said, Well, of course you're the first.

SPEAKER_00 18:06

So I just have to like, we've got to pause just for a moment about how the spirit moves. You guys have known each other forever and always been there for each other. Your son tells you to call Lee, who floats into the room and has just gotten this training and ability to help you in your most needed moment.

SPEAKER_02 18:32

Yes.

unknown 18:33

Wow.

SPEAKER_00 18:34

Yes. That's huge. That's huge. That is not coincidence. I just wanted to bring that up.

SPEAKER_02 18:41

No, it's just huge. And she brought her notebook with her. We made pages of notes for her to decipher. Um funeral arrangements, things to think about that I might not have thought about. Updating my will, um, making those funeral plans, writing my obituary, because I didn't know how long I had.

SPEAKER_00 19:11

I and I want to add something, is the other thing she did is she reached out to certain people. I was one of those people, and I'll never forget, and she said, This is the situation, um, and I know you didn't want your diagnosis to kind of be out at that part, um, but she said, I need people around her to support her. And I was like, hands down, I'm in. And one thing that you and I have shared is I would send you music. Now, this is the best part about Sue. I would send her music thinking she had never heard this in a million years, and she'd be like, Oh yeah, Mumford and Sons. My son told me about this. I sent you Harry Belafonte, and you were like, I went to see him in concert. And I I just love how through music, um, how that blessed the both of us in those moments, um, just to be able to share, but hopefully to give you these bright moments. And I bring that up because Lee has this way of kind of um picking the other support systems that you need. Not, I mean, not just kind of that funeral stuff. Yes. Oh, absolutely. Right.

SPEAKER_02 20:29

And although the first week was challenging, after that first week it was about hope. And hope has been what has sustained me. Um, it's just critically important to be hopeful, regardless of your diagnosis. Miracles happen. Advances are being made every day in cancer research. The National Ovarian Cancer Coalition, Ovarian Cancer Research Alliance, all these places are funding research and they're finding new different combinations of medications that are working for certain kinds of cancer. Um, yeah, it's it's amazing. After that first week in the hospital, then James and I um went to Dr. McSurah's office and we had our meeting, and he said to her, Because at that point I had thought, I'm not sure I want treatment.

SPEAKER_00 21:44

Stage four, what's the use?

SPEAKER_02 21:47

Or is it gonna is the treatment gonna make me sicker than what I already Because quality of life is critically important to me. I want to be able to go out and have fun. I want to be able to Socialize with friends. I want to be able to contribute to other people on their journey. So she said, without treatment, you have two months. And that really hit me. That sucks the air out of the room. So James and I talked about it, and he said, I'm not ready to have you go. And I said, and I don't think I'm ready to go either. So I said, I will do the treatment. And I also said, oh, she also said, McClara also said, you can stop the treatment at any time if it's too much for you. And so I said, thank you. I will do exactly that if it becomes overwhelming. So I had my first chemo, and unlike some people who I've talked to, I've talked to so many people with cancer now, their um cancer treatment was cumulative in uh how they reacted to the treatment. So the first one wasn't bad for them, the second one was worse, and it kind of piled on. Oh, I see. Mine was the reverse.

SPEAKER_00 23:19

Okay.

SPEAKER_02 23:19

The first one knocked me out completely. I developed neutropenia, which is a low white blood cell count, so I wasn't able to go out of the house. People came in, but they wore a mask. I mean, the whole, you know, keeping yourself safe, all a COVID kind of um presentation, but it it only delayed the um second chemo treatment by three weeks.

SPEAKER_00 23:54

Okay.

SPEAKER_02 23:55

And then it resolved on its own without medication. And after that it became easier and easier. And my last one, which I had, well, I had I think five rounds of chemo, then I had surgery in February of 2025, total abdominal hysterectomy, um, quite quite intense surgery. Um, you know, tumors that she snipped off of places and everything with her skilled surgeon's hands. And when the surgery was over, she said it's it was successful. You're clean. I I got everything I could see. I I think it's gonna be better. Wow. Because when I asked her how many tumors I had before the surgery, she said too many to count.

unknown 24:54

Wow.

SPEAKER_02 24:55

So I thought, well, it's not very promising. How do you get in there and find them all? Um but she did. And here we are two years later.

SPEAKER_00 25:08

What is your treatment like now?

SPEAKER_02 25:09

How what is your main like your I have uh three every three weeks I have immunotherapy injections infusions, sorry, infusions. They last 36 minutes instead of uh six hours the other ones lasted, and I'm on four uh pills of limparsa every day. That the infusions will last through October, and then I'll have another year of the Limparsa.

SPEAKER_00 25:45

So now that you have literally like faced death very close, like it was like at your nose, like staring at you. Yeah, what it what is your perspective of death now?

SPEAKER_02 26:00

Even shortly after diagnosis, I was not afraid of death. Death is a part of the circle of life. We are born, we live, and we die. I considered myself to be active and vibrant, my mother lived to 92, I was going to do that. Um and I still might. We don't know. Absolutely. I still might. Um I am not the same person I was pre-diagnosis. I have discussions with Lee about that, whether or I've I think I've evolved. And of course my priorities are totally different, but death is the reality for us all. And so many people I've encountered say, I can't talk about death. In one of my cancer support groups, which is Live Strong, it's at the Y, it's a um for cancer patients, 12-week sessions, you meet an hour and a half twice a week. Everybody in there has been on a cancer journey. Some are still on that journey, and it is the most amazing support group because you meet so frequently. You know, most support groups are once a month.

SPEAKER_01 27:41

Yeah.

SPEAKER_02 27:41

But this, we talk about treatment, we care about the people around us, but some of the people in that group can't talk about death. And several have said to me, I'm envious of you that you can't speak about it. Well, I'm not sure why I can't. It's is it a gift?

SPEAKER_00 28:05

I don't know. I think it's um, if I had my opinion, I think you have this different level of wisdom and discernment, right? Like when you talk about your relationship with the spirit before this, that maybe allows you to understand death in a little different way. But my hope is is maybe that will bring those people a little bit closer, maybe than what they were before. I hope so. So, and right now, I mean, you're also um an advocate on educating women on the early symptoms, um being advocate for themselves to get checked. Um, talk to me a little bit about that.

SPEAKER_02 28:54

Yes, um, I'm in the Teal Time Sisters ovarian cancer support group. We also have um an awareness group, which is open to anyone. In the support group, it's only for uh ovarian cancer survivors, and there are several of us who are really uh eager to get the word out, and we've done a couple of health fairs, and that was so enlightening because there is no screening for ovarian cancer, and the women that we talked to, so many of them said, I don't have to worry, I have a PAP test every year. It doesn't show it. It doesn't show it. Um it's and and the look on their face, well, why didn't somebody tell me? I mean, now that I have this diagnosis, I think it's one of the least highlighted cancers. I mean, we talk about men's prostate and their levels, women's breast cancer, women's breast cancer, cancer, all of these other things. And ovarian cancer, we just don't talk about it. It was no place on my radar. I had the back pain, the urinary frequency, the fatigue, the bloating. I had all that. And it wasn't really even considered by me, and I didn't advocate strongly enough with my gynecologist. Yeah, yeah. I should have said, and this is something that I learned from uh one of my sisters in teal time. She said, I told the doctor, I'm not leaving your office until you schedule me for a CT scan.

SPEAKER_00 31:00

Yeah.

SPEAKER_02 31:01

I thought, oh my goodness, I thought I was assertive, but you really are.

SPEAKER_00 31:05

Well, you know, it and and I'm a physician, I know most of our listeners know that, but there is just a certain level of when you as a patient know that there is something wrong that we have to be in tune to. And as a patient on the other side, I'm like, if if I am shown that I'm just quote unquote crazy and nothing's wrong, I'd rather you show me that than something that should have been managed um appropriately. I so I I I agree women need to start being better advocates, and we as providers need to start listening better. So do you have any last words for us today, Miss Sue, about your journey?

SPEAKER_02 32:00

Um advocating for yourself is is really tops on my list. Finding a good support group and helping others. That has been one of the best things I've done. I've met people through some of these support groups, not all of them are for ovarian cancer only, and one of the women who is the facilitator of this one group said, I need for you to talk to this person. Wow. Because I think she could benefit from your insight. So it has been my joy to walk with four different people now. You know, I take people to their infusion appointments. Wow. I sit with them, I'm on a first name basis with everybody in the infusion center at the 900 building. I love that. Um and it just works for me. It takes the focus off of me. If you focus only on yourself, it can consume you because you start thinking of everything that's wrong. And yet I have all of these wonderful things that are right. Do I have my stamina back? No. And I probably never will. That pre-cancer stamina, I'm older now, I have a serious illness, and it's different. It's different. So advocate for yourself. Um, join support groups, journey with others, help others. Um don't fight the fact that you have no stamina. Pace yourself. Figure out, okay, this morning I can do a load of laundry and I can vacuum. Then I'll rest, then I'll do something else. You know, I used to do all those things without even thinking about them. But now you make a list, you check things off, and you're you're fine.

SPEAKER_00 34:17

And you're okay with it. I am. It's okay if the laundry doesn't get done.

SPEAKER_02 34:21

It is. It is. It's fine. It's fine. Um, and one of the things I can say that that Lee made so obvious to me is the people that you have to support you. You came to see me all the time, you sent me all those wonderful music connections, and she identified five other people who helped me throughout my recovery phase from time of diagnosis through chemo, through surgery, and after. And somebody had a different day of the week. And so no one was inundated with responsibility. It gave my son and daughter-in-law a chance to keep their jobs. Right, right. So on their day off, they were my support.

SPEAKER_00 35:18

Well, and also for them to just love on you and nurture you instead of having some of those extra caregiving burder burdens, which can be hard.

SPEAKER_02 35:30

Yes. Yeah, it's it's very hard. I mean one of my nieces took me to 90% of my chemo appointments. You know, it sat with me all the time. Um, I couldn't have done it without her.

SPEAKER_01 35:45

Yeah.

SPEAKER_02 35:46

It's just beautiful, you know, and and you see this giving spirit, and I didn't realize until I was able to give back to others on their journey when people would say, Oh, I want to do it. And now I know what they're talking about. I want to do it. When people say thank you so much for helping me, I say, it does more for me than it does for me. It's that phrase, the gift is in the giving. Yeah, I mean, it's it's precious. And I have the support of my son who someone says, Does it bother your son? This question was asked the other day, does it bother your son that you still need help with some things, and yet you're helping all these other people? And I said, Not at all. He thinks it's wonderful. Again, he sees the benefits it gives me.

SPEAKER_00 36:44

I love that. Yeah. I and I I I think about um probably those moments when you reverse diagnosis, and I always try to have these pictures of the spirit, Jesus and God, right? Like the kind of whole amalgamation, right? Of just wait for it. Just wait, Sue. Just wait. Breathe. Pause. We're gonna get you through this. And the gift that you are gonna receive on the other end is even greater than what you had before. And I've I have no idea, like, all that even you've gone through because I know we've just highlighted a little bit of that. But that's what I think about when I look at your journey with cancer and how you have just truly used it to be this light, right? The way you shine your light, and you've used your purpose um with the life that you've been given. So I appreciate you.

SPEAKER_02 37:56

Thank you.

SPEAKER_00 37:56

I appreciate you. And now again, I am gonna have to end this podcast with my uh non-trained musical voice in front of Sue. Perhaps she'll help me out a little bit. No? Okay. But thank you for sitting down with us. My pleasure. Appreciate you, and thank you, Cheeto, who's been nicely sitting on the table listening to us. Let it shine. Let it shine, let it shine.