In a two-part series, Cara is joined by Stacey Boetto, FNP-C, NRCME, and Attorneys Barbara Morton and Cosmo Tedone as they share their inspiring journey through Cosmo's cancer battle. They explore the impact of their friendship, the connections nurses forge with patients, and the pivotal role of trust in a patient's ability to cope. Barbara elaborates on her role as Cosmo's caregiver and advocate. Cosmo and Barbara discuss the distinct challenges they've faced, while Stacey and Cara emphasize the significance of support systems and gratitude in a patient's healing journey, and Cosmo shares significant moments from his cancer experience.
Stacey Boetto, FNP-C, NRCME, is a nurse practitioner with 28 years of experience starting in cardiac/ICU where she spent many years. Over the decades, she has worked in oncology, PACU, occupational medicine, pain management, and ortho/spine. Working remotely from an old RV, Stacey was the provider for over 70 fire and police departments, where she conducted their annual physicals, pre-employment physicals, sick visits, on-the-job injury evaluations, and return-to-duty evaluations. She is now working in clinical trials and finishing her doctorate of nursing practice (DNP). Stacey feels that nursing is her calling and not a job. It is why she is here on Earth.
Attorney Cosmo Tedone brings 24 years of legal expertise, specializing in Criminal Law, from traffic violations to murder cases, complemented by experience in civil litigation. He met Barbara in 1997 during law school, and after graduation, they chose Illinois as their home, bridging her Colorado roots with his Connecticut origins. Since 2012, he has shared a successful practice with Barbara. Remarkably, Cosmo has battled Multiple Myeloma for 16 years, surpassing the initial prognosis of just five years to live. His journey encompasses five stem cell transplants, a car-t transplant, immunotherapy treatments, and spinal tumor surgery, alongside various fractures and surgeries. Through it all, his unwavering caregiver, Barbara, and his dedicated medical team have been his pillars of support.
Attorney Barbara Morton has a 24-year tenure in the field of law, specializing in family law, which encompasses areas like divorce, paternity, and adoption. She initiated her solo practice in Will County, Illinois in 2009, and in 2012, her practice merged with Cosmo, leading to the establishment of the Law Offices of Tedone & Morton, P.C. Committed animal lovers, they share their home with three cherished cats: Bella, Benny, and Boz. Barbara and Cosmo also actively support both animal and cancer charities. In May 2007, after a decade of partnership, Barbara and Cosmo tied the knot. Unfortunately, in September 2007, Cosmo received a diagnosis of Multiple Myeloma with a prognosis of 5+ years. Barbara distinctly recalls the day the doctor delivered the news in a matter-of-fact manner. She vividly remembers the emotional moment when, after an appointment at Northwestern, they were walking in the parking garage on the 9th floor when Cosmo collapsed to the ground in tears, and she will never forget the overwhelming fear and despair they experienced, believing that no one should endure such suffering.
- [02:46] Introduction to today’s guests and topic.
- [17:41] The complicated nature of nurse/patient relationships and the positive impact they can have on a patient’s morale throughout their journey.
- [24:27] Barbara and Stacey’s role as a caregivers and advocates for Cosmo and how it has played into the strength of his caregiving team.
- [01:07] Cosmo and Barbara discuss how they have faced separate battles in their roles as patient and spouse.
- [05:40] Stacey and Cara reflect on how the presence of a strong support system and gratitude plays in a patient’s healing.
- [10:54] Cosmo reflects on the moments that stand out to him throughout his battle with cancer.
- [23:12] Closing thoughts and goodbyes.
This transcript was generated automatically. Its accuracy may vary.
Oh, hey, nurses. Welcome to the Nurse podcast, Giving nurses validation resources and hope. One episode at a time. Oh, today on Nurse Dot podcast.
You get that relationship and it is a binding situation, especially for somebody with cancer. It's binding for us and it makes us feel secure and like we care and we matter.
Welcome to part one of a very special two part series. Joining us today is a touching trio, Cosmo, a man who has been fighting multiple myeloma for 16 years. His wife and caregiver, Barbara and his longtime nurse and friend Stacey. Their journey narrates a tale of resilience, care, love and friendship as they reminisce about their shared experiences. They shed light on the immense power of human connection in health care, revealing how connections can transcend beyond the confines of a hospital room and deeply touch lives.
I'm your host, Kara Lunsford, registered nurse and VP of community at Nurse Icon.
Oh, well, I'm really excited to have this interview with all of you. So I will just let all of our listeners know we have three incredible people here on the podcast today. We've got Barbara morton. Stacey barbaro. If I'm mispronouncing anybody's name, please tell me Cosmo Tyrone.
I came in Italy and half the people in I say, say Tony. My family says Tyrone.
Tyrone. Well, I always go with whatever the families says. Like when people say, How do you pronounce your name? I'm like, My mother, says Cara. That's what my mother says. So I'm really excited to have all of you here. I'm going to start with cause I'm going to call you cause because I want I think of you as a friend, even though I don't know you that well.
And so after the interview.
At the end of the interview, when he's like, You can call me Cosmo, I'll be like, Oh, ooh, ouch. Fat interview. So, Cosmo, tell us a little bit about yourself. And because we're talking today about just nurse patient relationships. And in this context, you are the patient.
That's correct. Well, I guess I start with my battle of cancer. I mean, personally, I am an attorney. I own a practice with my wife, Barbara, who's also on the podcast. And we own a small law firm about 16 years ago, I got diagnosed with multiple myeloma, which was a shocking experience just to get diagnosed. And I can remember when I was first tested, had a lot of pain in my back, and I wanted to get an MRI.
But of course, of course, the doctors would not approve it. When they finally approved it, they noticed that something was there. My one general practitioner said it was bone cancer. And as I learned later, there's no way he can define what I have until I do a PET scan. And it scared the crap out of me. I went on the Internet.
I had less than a year to let that metastasize. So I found a great doctor locally who did not really focus on most myeloma at all. Doctor process. And then she referred me to Northwestern. And when they took the biopsy and we had a great surgeon, they said it could either be a plasma site trauma or it could be most myeloma.
The good news is if I trauma, it would just be one spot radiation I've done. So I remember once I got the biopsy and they said it was cancer. I went downtown and I had a consultation with their oncologist and she says, I got some good news. Is the bad news for you? Okay. I'm thinking good news. It's plasma.
Tell Natoma. So she goes, You have multiple myeloma and you got five plus years to live. And then I shut down. I don't remember what else she said. I do remember me saying, Excuse my fans, what the fuck is the good news? And I remember by the time that I got out to a car, I just broke down crying.
So once I got to grasp that, then it had to be okay. What kind of cheating am I going to get? So for 16 years I've had five stem cell transplant, CAR-T transplant. I've had a immunotherapy, which was a week in a hospital that he used to that I've had a right shoulder reverse replacement and I fractured my humerus, but I got a bone spur.
So about a couple of years ago, they said basic it is no more treatment that they know to give me that cancer is getting out of control. It was in my spine, my liver, my scalp, it was in my skull. It was so it was very traumatic for me knowing, okay, this could be the end. But of course, technology advances and there we find something.
And my immunotherapy that seemed to help me greatly. But through this whole process, I would have made it through without my connection with my nurses and my doctors, like Stacy, who is one of my first oncology nurses. We ended up becoming friends and now we're actually both friends. We live a mile away and a lot of stuff we do together, but she's helped me through that process.
So that's kind of where I am at today in my cancer journey.
Well, first first, I'm so happy that you're still here with us. I mean, what a long, long journey. And and it really a testament to you as a human being, your will to live and your tenacity and clearly the support systems that you have around you, which probably really lend themselves to.
Let me say, you don't really know what a caregiver is going through, because I know my journey is okay. I've got to fight my wife without her, our database to do that. But a story of that, remember, is that I would break down emotionally or try to hide it. She would always be strong in front of me. But one night I heard it go into the other room and start crying and she knows that I knew her.
But she is my everything, so she's gotten me through a lot of new experiences.
So speaking of your incredibly strong wife who is here with us, Barbara, how has this been for you being on this journey? And also, did you have any experience prior to this ever having to do any kind of caretaking or anything to that extent? So tell us just a little bit about yourself, because we want to you're Barbara.
You're more than you're more than a wife. You're more than a caretaker or you're you know, you are a human with your own dreams and aspirations and talents. So just tell us a little bit about yourself and then just kind of your experience.
Well, Cosmo and I met in law school. He came from Connecticut. I came from Colorado. We ended up in Illinois. As far as caregiving, I never thought of myself as a caregiver, but I learned a lot of it from my dad because my dad took care of my mom all the way until her passing. So I kind of learned it by watching.
And at the end the day, you know, it's his journey and I'm there to support that journey. Certainly I'm sitting there thinking and listen to the story. You know, it's been 16 years. What he doesn't tell you is we had gotten married that year. So here we are. We just.
And within a couple of months he's diagnosed with cancer. That's not something you think that you're going to have the first year of your marriage. You know, you're thinking that 20, 30.
The road, it's something that you're going to learn. I have seen so much in the 16 years since his diagnosis. I've done more things than I ever thought I would have the capacity to do and certainly wouldn't want to have to do. But I had to, you know, we have to be there to support each other. And like they say in your vows, in good times and bad, we've had some very bad times and we've had some really good times.
So one of the benefits that cause one I've had is to have Stacey just so surprising that we had such a connection with Stacy and and her husband. Jeff, I have to tell you, we've we've called Stacy in the middle of the night saying, hey, he's got a fever. He's got this, you know, she's asleep, she's got a migraine headache, everything.
And it was over once over. I mean, she took us to Edward Hospital. She was in the emergency room. She is gone above what you would think a nurse would be. And I'm we are so grateful for the friendship and for the close proximity to our house. But we could not have done as well as we have without the friendship, but certainly the friendship of Stacy, who has the nursing experience and doesn't flinch.
You know, she's seen it. She's seen it all. And what does it also tell you? If she had to learn a lot of things, I'd had lines with it. Kathleen's in my chair or a pick line. She has to be the one that watches it twice a day. Give me fluids. Something. I don't think she ever thought about to even learn or know how to do.
She was nervous at first, but once we had gotten in there, it was like she was born to do this. He was so quick, so fast, even changing my bandages, which is not a fun thing to do because you don't want to rip anything out. But she's done a lot and learned a lot as a caregiver, as my wife, my partner.
But I learned it from Stacy. Stacy showed.
Me the first.
Time and they're right. So she's a great teacher, too. Not just a nurse, not just a friend, but a great teacher. Well, you've got to give us the money. Later on.
I was going to say this is going to cost me.
I was like, wow, these are you know, this is some great endorsement for you, Stacy. If you decide to go out on your own and and start your own practice, you've got some really, really great some great endorsements.
Yeah, right. And they're tied on agonist, right?
I know. I was like, so they're, like, credible people.
And by that I was going to say we are trying.
Very funny side note and then I'm going to like tag you Stacy So speaking of credible people, I was listening to a podcast yesterday with my son and it was the Tig and Cheryl True Story podcast, and it's where they actually go in and they analyze a documentary. So they watch a documentary and then they come on and they basically tell you about the documentary from their perspective.
They're both comedians. And so the one that they were reviewing was the Sasquatch documentary that I guess is on Hulu. And they were joking that the people who were the witnesses of this Sasquatch were not exactly, like, credible people. They were saying like, Oh, you know, they're out in Mendocino County, like, in a pot patch, and they actually use the word pot patch, which I thought was hilarious, like a pumpkin patch, but like, for marijuana.
And, and so they were like, that's the credible source. So I was like, the made totally made me think of you and your credible sources here. And they they're much more credible than the guys in the pot patch in Mendocino County. I'm just going to say that.
That's not giving us that much of credibility.
It's not all this little step above. So it was such a testament to who you are, Stacey, as a practitioner that, you know, you would go above and beyond. And it sounds like geographically you're pretty close also to this this wonderful couple. So tell me, like from your perspective, when you first met them, was it immediately like you just hit it off?
It was one of those things. And then how did it kind of become what it is today?
It's kind of funny because Cosmo comes in, he had some Ivy issues, right? It wasn't always like an easy stay for some people. And then, you know, here I am. I'm like, oh, that, that, that the A that's easy. That's cool. So one of the girls, Lexi, said, Can you come over now, Cosmo I love him, but he knows I can say this and Barb knows I can say this, but Cosmo was deemed as a little bit difficult to deal with, you know, in our facility.
But, you know, I.
Was that state because it took more than two picks on me. So that was not fun.
No. And Cosmo is very much an advocate. And when there is something going on, he's like, okay, well, what's what's going on? What are my numbers? You know, he would come in, get his port flushed or whatever, and we would draw labs. And so he's like, okay, well, where are my labs? What are my labs? What does this mean?
Where am I at? So as a patient, you have a right to now, it's not like I'm going to jail your labs. It's a secret. I can't tell you. It seems like that kind of is a thing in health care. Right? And so Cosmo, like he said, he was a little bit of, you know, some of the people had a little bit harder times with it.
So the first time was one of the girls sitting next to me is, you know, we're in this big infusion suite, right? So our we have our desks and we have our little pod. So there's four chairs for all of us to do our infusions. And we're all in this big room that my desk is facing this way.
So I can see all of this of somebody else's patients have, you know, an issue and this person's facing this way so they could see this and know this one facing this way. So we can all keep our eyes on people's patients, because sometimes we have our backs, we're taking care of somebody for us. And so one of the girls is like, Hey, Stacy, I kind of heard a little bit of commotion like, can you come over and see if you can start a vibe?
I said, Sure. And she pulled me off to the side and says, I'm so sorry. But like, I just I can't get it. And he's really frustrated with me. I was like, No worries. So I just came over. I introduced myself, you know, and Cosmo was a little bit kind of like, you know, she's going to be sticking me all the time, this and that, you know, and how long is it going to take her?
And basically he's like, Do you know what you're doing? You know, I was like, Well, I'm going to see if I can wing it, you know? And he's kind of like and I'm just trying to get some humor, you know, like third time, you know, whatever. But so I get it in and he's like, You got it. And I go, Yeah.
He goes, But does it work? Yes.
You know, you remember any of that? Probably because they gave me I've been in jail.
Well, it was. That was before. That was before. But yeah, he was like, is it going to work? I was like, Yeah.
Cosmo, You have to have an IV before you can get IV Benadryl. I'm just going to, like, call you out on that right off the bat.
I know. Yeah.
First I.V., then IV, Benadryl.
When you're on the I.V., better you can't remember which is which.
And so just from there, he says, can shoot that my I.V. From now on, I was like, I'll start it. You know, I'll be here. I'm usually like, Yeah, sure. And the other nurses, like, he's yours now. I'm like, Okay, cool. And then at some point it was funny because I knew that he was an attorney, but I didn't know every single aspect of it.
And then all of a sudden I start give him his medications, all that kind of stuff, waiting for his chemo to be mixed and all that in the pharmacy. And next thing you know, I see here's a little girl comes in big stack of manila envelopes and here I am, mama nurse And then he's got some Benadryl. And I'm thinking, what in the actual hell is this lady doing?
Comes over, brings in this big old stack, and they're talking this now I'm watching. And I was like, Is that your secretary? He goes, That's my wife. And I was like, Oh, that's not going to be good. Okay, what do we do? And he's like, Oh, she's bringing me all this stuff or, you know, court documents and some other things.
I just want to sit and look over, you know? And I was like, okay, you really shouldn't be doing anything right now. Just sit back and relax. He's like, I can't. I was like, You need to learn to sit back and relax. So it was just kind of from that moment. It's like when not when people are a little crabby and cranky.
I always take the back stance and it's like, okay, they don't feel good. They're in my home now and they feel like this is not their home and they don't have control. And I don't like for people to feel like that. So I try to let them have as much control as they can. Obviously, you know, you understand.
And so I think Cosmo and I just kind of jived with that as I understood, he didn't feel good and I understood he wanted answers, especially with his diagnosis. I would too. And if this were my family member, my friends, I would also want them to have those answers to know where we're going, what we're doing. It just became like, I want her to do it.
He would call over and say, You know, Hey, I'm running late because I had a trial. Well, you know, you have to keep your schedule. You can't do this now. You push everybody else. And I'm like, Just tell him to come in. I'll take care of it. I took care of what we needed to take care of to make sure that the patient got what he needed.
We can't stop this treatment. We can't alter that treatment. That's not our call as nurses. So it just kind of bloomed from there. And, you know, here, in all honesty, I was trying to think of where did it come from, where did it transpire, where where to go from. You know, these are this is my patient and his family member, too.
Now, I consider them family, you know, and I don't even remember, like the.
Aspect. We just kind of fell into it.
It happens that way. I think it happens very organically. And I've never myself, I've never been one that's had maybe what they would consider great boundaries when it comes to that. In fact, very early on in my career as a nurse, maybe a couple of years, then I discovered that there was a patient that we were taking care of who was in a foster home.
And the foster home just happened to be down the street from my friend's house, who's now my wife and I felt like I should provide an extra level of support knowing that he was in a foster care and he had his leg removed and he was young. And I remember the day I got called into my manager's office and it's different situation when you've got kids and stuff like that involved.
So, you know, you guys are all adults. It's a different story. But, you know, it was kind of like, this is inappropriate. And I just remember feeling like inappropriate, like the word inappropriate just resonated in my head. It shook me down to my core and I thought, that's like the worst thing you could ever say to me, that I'm doing something inappropriate.
Has that ever happened for you? CC Like with Cosmo, where anyone's ever said, you know, this blurs the patient nurse boundary or relationship. Have you ever had that?
Well, I think we became better friends afterwards because she did stay at the infusion place. I was out for a very long time, so we made a connection and I think we really developed our friendship and everything later on. And so I don't think anybody would see anything as being inappropriate. But now later on they would say, Oh, you know, Stacy, you're great friends with Stacy, but no one said anything.
Yeah. Dr. G. Though she knew because I stayed. I was there for about a year and a half. So you started in and I saw you for about a year. But she always said, you know, because I guess Cosmo and Barb had said something one day. I know Stacy because your first house was a few miles away from me.
I know that there was something I can't remember. Well, see, she's not that far from me. And she's already said, if you need something and she's like, come out to me. And she goes, I think it's awesome that you guys have that relationship and that they trust you for that. I was like, Well, don't you trust me? Dr. G.
And she's like, No, I do trust you. It's because I think it's awesome. But I did have that same thing. Cara happened to me with a patient who they forgot her. This is when I was working in cardiology and they forgot to pick her up after her testing and her doctor's appointment. And so she's an older lady and she's sitting there and I'm like, trying to walk out the door and it's all closed up.
And I was like, What's going on? How can I help you? They forgot her. I took her home and I actually was going to get written up, and that's the only time that I ever got. You're going to get written up for this because I took somebody home. They're like, Well, you put yourself in jeopardy. But no, you had no other way home.
So we couldn't reach her family or anything. I was like, What am I supposed to do? Put her in a cab and hope she gets home?
It's being human. And I think that I'm hoping listeners will take from listening to this story is that sometimes the lines get blurred and sometimes it is hard. Sometimes you get really close with a family. But I always used to say like, I don't want the alternative of I am not getting close to my patients. I keep a distance, I have a wall up.
I'd rather grieve for the loss of someone and know that I had an impact or that I made a difference in their lives and that they made a difference in my life. Right then to say I really toed that corporate line or I really made sure that I had these very, very strong boundaries. You know, it's tough, you know, And I think for new nurses, it's especially hard because you're kind of like people want to be black and white.
They want the it's okay, it's not okay. Yes. No, and that's not the real world. And you miss out on really incredible relationships. So now you guys have known each other. So it's been six. Has it been six years that you've actually we know each other since the very beginning.
2010 was when I started in the infusion center.
So about three years after.
About three years. Wow. That's amazing.
Three years after you got diagnosis.
So you've been with us for 13 of the six things I was going to say. We also have a really good relationship with our nurse practitioners that are at Northwestern. We know all about their lives. They know about our lives. We know when they're not there. We know Amanda is not there. Before it was Kellie, it was just like somebody had dropped the ball, you know?
Oh, I don't want to go through the whole story of everything I've been through. You get that relationship and it is a binding situation, especially for somebody with cancer. It's binding for us and it makes us feel secure and like we care and we matter.
And when talking about these relationships, I think back on my 16 year and it's been my journey, you know, better than or worse than anybody else's, but I've been through so much, so many hospital stay. I begged God to take me multiple times. But when I think back and look at their 16 years, I don't think about that. What pops out mostly is the good doctors and nurses to the relationships that we had. And unfortunately, even some of the bad ones pop out. I remember trying to get an IV one time, seven times they tried my arm.
I had a home visit and they had to get a supervisor, which stands out relationships like Amanda and Kelly, who are nurses at Northwestern who know everything about me. We know things about them. Same thing with Stacey, Dr. G. Dr. Marta. So those are the memories that pop up. First. And I think about my disease more than the battles that I've been through.
So is very important. Having that relationship, knowing they know you there is and you even know yourself.
And do you feel confident that having those types of relationships do credit being here much longer than maybe your prognosis originally was.
If it weren't for Dr. Naidoo? Because he is my doctor at Northwestern, I actually challenged him and went to Mayo Clinic several times. Each time they went to Mayo Clinic, they made me feel good, but they gave me the wrong direction and it put me at a negative and back on my treatment because the cancer got worse. Doctor made a tough year.
He things are back and I had three tumors on my skull that were resistant to all treatment. Out of the blue, he took me off the chemo, put me on a chemo that I I've never tried. It's been out there more than any other, and it reduced the cancer significantly and got me ready for the immunotherapy. Without my team, the people in place here, I guarantee I would not be here today.
And also my support, which is my wife.
I think a big part of what I hear you saying. And Barbara, I ask you as well, because you're the spouse in this situation, the development of trust is huge, especially in these lengthy journeys, because there are going to be times when you just don't know which way to go, especially when you've exhausted all of your therapies. You have to try new and out of the box things.
Being able to trust your practitioners is huge and it doesn't take much to undermine that trust in your experience and I'll ask you, Barbara, how has it been for you in developing those relationships, not as the patient, but as the spouse of the patient has it been difficult to create those relationships with the practitioners or has it been pretty easy?
Well, let me say one thing before Barbara start. She's also my advocate. She goes on to all these seminars from my these she looks at the new type of treatments and bring those forms to our doctor who may not even know about, though. So she's proactive in that aspect.
How has that been well received, Barbara? Because sometimes it's not.
Sometimes it's not. But the team that we have around us now is well-received. And as far as I'm concerned, it's Cosmo's life. It's his decision. But we got to give him every opportunity, every avenue to go down. And if they aren't willing to do it, then I don't want them involved. And that's usually always my first thing is I'm here as an advocate for Cosmo, and I if he doesn't want something, they we're not going to do it, but we're going to make sure that he has the full knowledge of it.
And trust me, he said to me more than enough time, I don't want to live anymore. I want to call it. And then I'm like, Well, you know, that's your choice, but I don't think it's time, so buckle up. Let's find something and do something new. So I need people around me that were willing to take that initiative and that I might not have a medical as you guys do, but I'm going to learn as much as I can.
And I want you guys to be positive and be honest, but positive. Think out the outside the box. I'm tired of people saying, Well, this is the traditional way. Don't tell me as a professional, go another avenue and if you're not on that boat, you're not part of our team. And you know, I have to be the advocate for Cosmo.
And that's what he would want and that's what I want. And the people that are around us today, they see Dr. G, Dr. Maida, Amanda Kelley, all them are because they admire the fact that I question it and Cosmo questions it and does think outside the box.
Stacy, do you ever have to jump in or do you feel like you have to jump in sometimes where you're the friend but you were also the nurse and now you feel like, okay, he's being seen by a different set of practitioners. It's tough sometimes because you're trying to navigate something that can be a territory that sometimes they don't want you treading in.
When he is trying to think of like a word, I'm like, possessive is exactly the right word for that. And I've had this experience too, as a nurse, where I'm a nurse, you don't work here, you don't know this. All right. Well, so how has that been for you as the friend who has also been the nurse who has all this historical information about him?
A perfect example, the Bible say one of the it was on Easter a couple of years ago. Cosmo was not doing really well. And it was a rainy night. It was in the evening and we get a phone call, I need you over here. And it's a panicked barb, and Barb is never panicked. And so immediately my spidey senses went up and she's like, I don't know what to do.
I don't know what to do. And I've tried everything and I don't know what to do. And I was like, I'll be right there. And my husband's like, I'm running around the house at that point because I have my PJs on, you know, and I'm trying to put socks on and it's pouring down and I'm just trying to get everything and I'm on the phone like, stay there, stay there.
I'm coming, you know, this and that, and just kind of looks at me and I was like, I got to go to Cosmo and Barb's really quick and he's like, I'll be right there. I'll get the car ready, get your stuff, Let's go. So we jumped over there. I was up there for a while, and then finally I said, You know, it's time for us to go to the hospital.
Not that he wanted to, but he was that sick to where I said, It's time for us to take him.
Right before we went to the hospital, I was having uncontrollable shakes and it's cold, so we don't know what's going on. And then I had the worst migraine headache in my life, and we found out eventually that it was an infection in the pic line. But she did everything to calming down. She got me something for the migraine headache, thank God, because it was just getting bad.
And then she took control and we just let her do her thing. You say she's too tired.
I know you're fine. No, no, no. That's exactly what Carol wants to hear. Like the interaction and that and how we are. But he was sick, and Barb usually is very well composed, and I knew that she was like, I don't know what to do. And she didn't want to see him like that. And so, you know, I sat with her.
I sat with him. She was right there by us the whole time. You know, she doesn't leave. And we get in the car we're taking in and it's covered. So only one person is allowed to come in. Barb says, See you go. I said, I'm sorry. What? She wanted me to go sit in the emergency room with him.
She said, You know everything. I want you to just go in there, get the information, tell them what they need to know about him. You relay it back. You just go with most of it. Barbara She's like, Just go in with them. I would rather you go. I was like, okay, So I mean, to have that trust, there is that thing and, you know, there be like times that, you know, Barb will be like, yeah, I don't think you know, we don't want to do that.
I don't think that's going to work. I make a suggestion or say something, you know, and we got to look at it as like she says. And that's one thing I always respect about Barb. She's like, This is his journey, This is his decision. But she always likes to make sure that he has that educated decision and that we give him the options, not just say, this is what we're doing.
Like it or not. And so it's that respect that we can have those conversations and she can say, Yeah, you know, we're not going to do that. I don't like that idea. And Carl will be like, Yeah, no, I don't like that idea. It's that respect as far as I don't know what they do say about me to the other providers or anything like that, but I am very respectful of that is their realm.
I am their friend, I am an educated person and I'm going to help them how I can. But in the end that is going to be their decision. But it's also very awesome that I know when he's going to go get his treatment and, you know, Hey, how's it going? He when he was doing weather the car T cells that you were doing that you were in the hospital like they had to drop you with everything and you were in there for like weeks at a time.
That they're clear to you. They modified the T cell.
And he was stuck in here. And every day I would take some kind of goofy picture and send it to him every day because he felt like crap. And he's like this I don't want to be here anymore. Like, I can't go. And then he was, you know, he'd have his issues and he'd start having some problems and Barb would be updating immediately and I'd be, How you doing?
How you feeling? And if he didn't answer, I knew that he wasn't doing well. And so, Barb, you know, I'd be like, How's it going? Where's where we at? With as they go and have a test, they leave the doctor's office and they let me know the results. And I also want to know not because I'm being nosy and I'm putting my nose in, but because I have that relationship with them, you know?
And when it wasn't, you know, too long ago, that cause wasn't doing the greatest, like he said. And they said, you know, we've exhausted everything and it's worse than what it was. And I just hung up the phone after my husband's like, What's wrong? What's wrong? I went outside and sat for a while because I just couldn't even say that it and he's like, Oh my God.
It's kind of like what you said before. Your doctor's being honest. When I got a PET scan that was horrific. I remember it got tomato looking at it, and he always tries to get a little positive. He just turned to me and said, It's not good. So we knew right there that it was worse than we thought it was.
And that's what Stacey is telling me. And it kind of blew me away, to be honest with you.
So that was how long ago was that that you had this, like kind of turn.
Your barbecue in 21? Yeah, the teeth, the carpet, though, was January 21. Would make matters even worse is before we went to the hospital to do it, he tested positive for COVID, and so they put it in a separate room by himself. And I couldn't be there. Nobody else. But the doctors could be there. You know, you could imagine how bad off he was emotionally.
And that drove both of us up. But she's with me every transplant getting down. She brings me up, she forces me to eat, brings me outside food, and without her, all that is gone.
Then the net and COVID. And they don't want you to go up inside that room. No visitors. No outside that room. That was the worst year. 21 because of that reason.
Oh, Join us next week for part two of this very special two part series. If you're a nurse or a nursing student who enjoyed this episode, don't forget to join us on the nurse dot com app where you can find the nurse dot discussion group, a place where we dissect each episode in detail and delve deeper into today's topics.
Nurse Dot is a nurse dot com original podcast series, production music and sound editing by Dawn Lunsford, Production Coordination by Ryan Wade, Additional editing by John Wells. Thank you to all the listeners for tuning in to the Nurse Dot podcast. Until next time, keep spreading the love and the care.
Oh, hey, nurses. Welcome to the Nurse podcast, Giving nurses validation resources and hope. One episode at a time. Welcome back to part two of this very special two part series. Oh, cause at the beginning of this interview, as you were talking about your wife and what she has done for you and how strong she's been, you got a little choked up because you said that you heard her crying in another room and breaking down and that that she didn't want to do that in front of you.
It sounds like she wanted to be away and go into another room and have that time to grieve by herself. How is that for you having to be so? We talk a lot about vulnerability vulnerabilities, a really tough thing. It's tough for most people in the world being vulnerable. How have you learned how to be vulnerable? How have you learned how to accept care from people?
I think that was the first time that I realized this wasn't just my journey. Yes, I had a fight. I'm the one diagnosed with the cancer. It's all about me. And then I realized I never realized what is putting my wife through. And I think that kind of gave me an eye opener into that as like, you know, she just has a different battles than I do.
And it doesn't mean that my battle is any easier or harder than hers, because it's still both an emotional battle. So it's made us closer. I think I've had friends who have gotten cancer and their spouses or significant other can deal with it, and they just left. And she did the opposite and she strapped on and she's ready to fight my fight.
And I know she could she take my daughter over, which I never want her to, because I don't want her to go through what I went through. And I don't know if I could have gone through what she went through. I mean, lots of times I keep this to myself because what I talk about it or my own journey, I do get emotional about it because you think about your own mortality and you know whether you're going to die or not.
There's so many times that they said, you know, that we have the cancer is getting worse and you can feel it in my skull. The tumors are getting worse. So I'm vulnerable that way when I have to talk about it. Sometimes it's hard. And same thing when I talk about Bob's journey and all that she's done for me and know she realizes how much I love her and I appreciate that.
And I think we've become best friends because of that.
I know for my sake is that it's the the friendships that I have around me that have given me the energy be able to make it through this. But also just watching Cosmo. I mean, he's.
He's incredible. Is this journey. This is not anything anybody ever expects to. And especially at 40. And to have that journey and to be a strong individual that he is, he just motivates me more. We both realize that friendship. We've learned there are friends and then there's friends. And you found that out really quick and without their support.
The support of Stacy and all the other friends that have been there for us, I don't know how I would have made this journey, how I would have had the energy to do it, how he would have had the power to get through with what he does. And not to mention, I think that we are very grateful for every second.
There are worse things in life and we are very, very blessed.
And I think I've been lucky to have a job that's not physical because I can't ever do anything that's physical. And I've been able to practice law throughout this with very little misstep. So I've been lucky and blessed. So, you know, I've been in the right place at the right time. When I went to law school, I waited seven years.
I just happened to cover Pine Bar by and never met her. I consider those guys great, right? People put your life at the right time and sometimes they're taken out.
I think that this is it's so beautiful because I do a lot of interviews. I do a lot of podcast interviews. And also I was a pediatric oncology nurse, so I did a lot of oncology with kids for the first half of my career. And what I have seen throughout interviews, throughout my own experiences with patients and seeing the families, the ones that thrive, I think, you know, not just survive.
Lots of people can survive, but there are people who really flourish and thrive throughout difficult times. And the two consistent things that I see all the time is that gratitude and the connection connection and gratitude connecting to other people your community, friends, neighbors, family, new people, meeting new people and being willing to open up and meet new people.
And really that gratitude for some of the small things that we do. We don't even think about the fact that you said Cosmo just now, like I'm so grateful that I have a job that, you know, that I chose a career that has allowed me to practice throughout my six years of being ill. So, Stacy, it's going to bounce back over to you.
How have you seen that just in terms of from your perspective as a nurse and practitioner and that gratitude and that connection? How do you see that in just how people thrive or survive in this world?
No, you nailed it right on the head, because I feel if somebody is there and they're going through this by themselves, they don't have a support system because we've all seen that. I mean, you have the you know, your kiddo that lost his leg and was in foster care. I mean, imagine how he feels. Who does he connect to?
So there you are. And if somebody doesn't have that, I think that they just tend to kind of and I want to say this wrong, but give up. What do I have to live for? What do I have to do? You know, like, why? Just because I don't have anybody who cares about me. So. Yeah. Or you and I both know that mentality weighs on your well-being in so many aspects of health care.
And if your mindset isn't there, you may not do the things that you need to do to get better. You may not have that willpower to get up and go do tea and tea and learn how to do things. You know, obviously he's going to have a prosthetic and need to relearn how to do things without this leg now.
And so if you've got that support system, you got somebody who's kicking in the bum, Get up. Let's go. Come on. Come on, come on. And they feel like, okay, yeah, I've got that support. I've got a reason. And I think it's that gratitude. And those two are just absolutely amazing. And I never forgot Barb in this, because Barb is still.
It's their journey. I know, she says, but it's their journey. It's just she's walking next to him but on a different type of road. You know, I would text how you do and in houses how that and then I would text Barb But how are you feeling? What can I do? If you need to yell, if you need to holler, if you just want to curse, if you want to have a bottle of wine, call me over, you know, or we'll just toast it, you know, from there.
I think having that support system and the gratitude, it goes a long way and I think it does help a lot of people because, again, I go back to I've seen so many people that didn't have anybody visiting them during some bad, bad times. And I think that their outcomes were a lot less than they could have been because they didn't have that person or people or support system, whatever you want to say.
I've seen pets do an absolutely wonderful thing for people. It's whatever your thing is, some people don't have kids, some people don't have a wife, don't have a husband, don't have a spouse, doesn't whatever. And whatever it is that you need that support, whether it's just good friends or an animal, if you don't have that or it's restricted from you, I think that just negatively affects us.
And being in in nursing, you know, that I worked cardiac I see in the beginning and stuff and then I did some oncology as well after I did about five years of oncology after that. And it's just when you see that it's hard because you want to give these people I want to give everybody their equal time and I want to sit and I want to listen to them and I want to learn about their lives because I feel if I make that connection with you, you're going to trust me and we're going to have a rapport.
And, you know, I'm that one that, hey, listen, if I need to have a coming of Jesus talk with you, I will have that coming to Jesus talk. I mean, the doctors would be like, we've got a really difficult patient, so if I need to take them. But it's that one of you got to listen to people, too, and you've got to feel it out.
Are they going to be receptive to this? Maybe not now, but can we do it during another time when you're up up to it a little bit better? Absolutely. Maybe not. But I just feel that there is that support mechanism that pushes people or pulls people in the directions you need to go this way or that way.
I always think that and I've said this to a couple of my friends who were either the parents to a child that I cared for or they were the patient themselves, because I've done adult care as well. I've always said that there is something about when you meet people and they're just real and they're raw and things are just all stripped away.
When you're in pain, you're going through life and death scenarios. You don't have time really to have a facade, to wear a mask. You know, that kind of all just gets stripped away. The benefit is, is that if you, as the nurse are willing to strip yours away as well, the connection that is made or can be made is one that will last a lifetime.
And so some of my strongest relationships and most authentic are really with those people that I've met when they haven't showered in two weeks. And they because they've been sitting at the bedside and they probably are like, I think I smell. And I'm like, Yeah, you do?
In fact, how about I sit here for a minute while you go shower? There's how many relationships do you get to have like that in your life? So it's such a blessing, right, to be able to have these types of real relationships, like the ones that that the three of you have. Those are real relationships.
I wanted to ask Cosmo if you can cause to recall a time, something that stands out to you. Like when you think about Stacy or when you think about Barbara, there's just this moment that comes up for you and you're like, You just remember what Stacy did for you in that moment. It was just something that will stay with you forever.
And ever and ever. And if someone asked you about her, you would recall that one experience that was very memorable for you. Do you have do you.
Have to experience.
Oh, okay. You're not you don't have to be nice. If it's memorable, it's memorable. Okay.
You know, I'm.
This is my first recollection of Stacy was when I was not getting, you know, the nurses were taking some time. And I do remember that after I did get told that they did put me in I.V. Benadryl. And I remember the way the month they used to give used to get me high slurring my words. And I know I've said something inappropriate to Stacy during that time, but hopefully she's forgotten all that.
But that's my first experience that I can remember that she made me feel at ease. I can't remember what it was. Oh, I said something like they might have set me up and got me the I.V. when I was with Dr. Gustafson, and they gave me the Benadryl there came out. So I'm like the hot one to take care of me.
And I don't say that I said nurses and said, Hey, he wants to. Hartline And Stacy, of course, is in here. He must want me. So that's how I first and I remember that because I was kind of shocked that I said that. But it was a better deal. Not that you're not happy about, but the other one and the most I think one that was after she was injured in college and the one that we talked about at the Easter time is I started getting sick pretty quickly.
Not sure what it was. I remember walking up the stairs to my bed, the cocktail bar major square in the bed, and I started having the shakes so uncontrollably that my mouth and teeth were chattering. I started getting scared, and then I got the worst migraine headache and I used to get them all the time. And I remember Bob Carr, Stacy and Tammy, she got there, like in the next minute.
It may have been longer there, but I was so scared that they took my blood pressure was very high and I went very low. And normally I think I had a fever and obviously nobody knew what I had, whether it was cold or not. But, you know, she treated it and she knew me enough. Wendy, yell at me and stuff when they gave me the words with the calm word, made my breathing calm.
And then she gave me something for my migraine headache. I probably shouldn't say that, but the headache by away way within 10 minutes. And then she right away, I think we're taking them to a hospital, see, which is the one that we need to go to. And then when we got into the waiting room area, I think was about only one of us can be here.
Okay? To me, she was like family, so it didn't matter. But she was asking the right question. He was you know, she knew about me enough to say everything that was going on. Now, we didn't know that it was a bacterial infection in the tick line, so they assumed they had the face, which I don't really think he's got it.
But it was all that support without me saying anything. She was my advocate coming as fast as she did new knowing that I was really scared and didn't know what was going on and whether I had COVID. And back then during that time, I was dying from polio. But she was there a split second. So those are my two strong memories of her.
Your slides, We won't say the other stuff one.
Another to, I.
Guess one, they have to be an adult.
That's right. We have the Naughty Nurse podcast that's also available. So if you'd like to join the Naughty Nurse podcast, well, you know, that's.
A really think it gets up in those half hour facing whatever they have and we're good to go.
Oh it's a requirement. It's a requirement it's the Halloween costume the whole thing.
And just picking it up, whatever. I'm not 100% sure because I don't like to bother Stacey or something. We'll call her for the advice right away. I say, Hey, we got this going on. Hey, he's got his bandage and it's itching that and would you mind coming over and changing it? And she would find out this line is nasty, creepy, so she would clean it.
I mean, God put her in our life and she's been mad. Just our nurse, our good friend.
I love that.
And I would never I would never have given over to anybody but Stacey at that emergency room. But I knew that Stacey was going to be a strong advocate and she knew all the medical stuff that was going on with COVID. It's like now Stacey is the person that needs to go in there because that's what the best interest of Cosmo.
She's like a sister wife. She's literally like the next best thing to her sister wife.
Right. Well, I just spoke to we don't mind having Jeff around either.
I love it. I love it. So what about similarly for your wife, when you look back over this entire journey and it could be like a really big moment or it could be like a really small moment where you're like, Oh my gosh, I don't even remember that happening. Or where you look back on it and you say, Oh my gosh, that moment that was that really stuck out for me.
Well, I probably get a little emotional. I remember one of these chemo that I was on. Was it very, very harsh chemo. And I could walk two feet without gasping for air, but I refused to let cancer beat me. So I would go to court like that. And it would be difficult. And people fear. And I remember driving home one day, I started thinking about what I'm going through.
We had gone through. I remember getting home, sitting on my bed and just crying uncontrollably. And that's not like me to do that. I called barbiturate. I've had enough. And then I hung up and she came home. I was begging God to take me. I couldn't go through anymore. It was more than just the treatment, the pain, but the emotional trauma that it caused.
And I just didn't want to live anymore. And I remember Barb getting home and I was upstairs crying and she calmed down. I said, I just don't I just can't take this anymore. And just her being there raised my spirits enough where I started fighting back against it. But I remember that sticks out because I really, really wanted a guy to take me.
At that point. I couldn't take it anymore and that was very emotional for me. And she was stronger than I thought she would be. And that was, I think, the one experience that sticks out and that was it very long ago, to be honest. And I think that's the experience that I always be within me. Christina's gotten better after that, and I had better days and made memories playing for up to me.
I would have liked to have gone at that time.
I guess I wasn't your time yet. I guess you still got more stuff to do.
To help others. Yeah, say that too. If somebody knows that I have my love. So would you mind talking to a friend of mine that was recently diagnosed? I'm not one that likes to do that, to be on Twitter. And it took me like a month to call him. So I called him and we must have spent over hour and a half on the phone going over my experiences telling what I wish I did.
And then he had one of the doctors I'm interviewing is Dr. Meda, so was able to talk to him about him being out of that box. I was able to give something back to somebody else here. I didn't realize I had that in me because it's difficult to do that. And though I'm attorney, I'm not very vocal, so I'm not very talkative.
But care and help is coming through what I've already been through. That felt good for me to do.
Maybe we need to just have just a full podcast of you talking about multiple myeloma, because I think that what you're what you're saying is that you do have this opportunity. The longer you live, the more of an opportunity you have to be able to inspire others and give hope. On this podcast, what we say is providing nurses with validation resources in hope one episode at a time.
And I think that that's what you do. I think that you inspire fear and you provide hope to those around you and strength to those that are around you. Barbara said it earlier about she finds her strength in you and so keep doing what you're doing because you're doing something right. My friend.
I it's the people around me. The good doctor and the good nurse are putting me on a direction of where I should be going. Without that, I don't think I would be around. And I think everything we've done in our life I think cares for that. Norma, I used to be a big weightlifter, used to be an avid runner.
I think even though I had to stop all of the things I like to do, it prepared me for the journey that I had. So I don't think you realize what life did for you to get you to where you are today.
But let me add to that that this man used to irritate me and still does, but when he was really sick, I try. He does a darn good job at it. So you got my little buddy. Anyways, so this man, despite his biggest thing, is, you know, I want to work out as I can. That is not even your battle right now.
But I want to work out. I want to work out. I want to work. And he'll be working out. He's so tired. He's sick. He does not like. The last thing you need to be doing is working hours. And but yet he gets up. You know, I wasn't able to lift because of the tumors and everything and then had some issues and, you know, spontaneous fracture, spontaneous fracture getting on a flight from Florida, which, yeah, that was an ordeal.
And so, you know, here he is. That's his focus. Like, I want to do that. And yet here he is also going to court and I'm like, no, stop. You have a group of you guys that can do this. You won't he won't let them. He won't let them. He went and he would not stop.
I don't want cancer to beat me. That's right.
I know. But even at that, it's like you bother us now. I'm good. Okay? And Barb knows I would be like, I tried, but this is what you need to do. And I was like, okay, it gives him a different focus, You know, if all you do is sit around the house and just think about your cancer, it's going to kill you.
And like Doctor made us sad. When I get back from our chance to do something. Were there any concerns about. He went back to work. Get me. And by the way, you know him very well. I was like, I'm okay with it. That's what gets me moving. And I think I heal faster by doing things like that.
Well, you're you're living. I think that that's what I see. And what I hear when I listen to their stories about you and your stories is that you're just choosing to keep living instead of waiting to die. That's the difference. And I think as nurses, Stacey and I both have this mentality sometimes where it's okay, but you got to like, let your body recover.
And isn't there a happy medium here somewhere between sleeping and going and running a marathon? You know, it's like, is there somewhere in the middle? And I think what I've learned in six, he's probably learned this as well, is that sometimes there isn't and that people die the way they lived. I mean, end of life nurse. I work with people who are imminently dying and the ones that the wives or the family members will say, Oh my God, my husband is so stubborn.
He's just like, you know, he's always been this way. And he's done this and he's done that and he's built that. He built a whole house or he did this, that. And I was like, Well, then it explains why he somehow managed to stand up to pee in a urinal when he's like literally hours from death. And I would say, God, I'm just so worried that he's going to, like, fall on the ground and die on the ground with a urinal in his hand.
And I had a wife say, Well, that's the way he'd want to go. And I was like, That's fair. I mean, like, if you said with urine all over the place, she's like, He'd probably want me to clean it up.
I was happy about that. Yeah, I will keep you up, I promise.
Yeah. I mean, maybe that's the standard is just the least. Make sure I'm zipped up. I'm in my pants, you know? But if I'm on the floor and the urinals all over the place, like, that's it, I want to make sure that that was my dignity. I didn't want to pee in a diaper at the very end, you know, And that's on us to have to let go.
Yeah. Sometimes we just have to let go and shrug our shoulders and go, Well.
It's your life, your choice.
Well, this has been such a beautiful interaction between the three of you. I've really enjoyed hearing. Each of you have, like, just a different perspective, a different story, something that was so memorable. Is there any last parting words that any one of you would like to say? Like you wanted to go on the record, You want to make sure that you get a chance to say it?
You just the one thing I would to say to anybody that's watching or that may be new to a disease, the relationships that you create with your doctors and nurses you trust and you know that you can believe in what direction they're given. If you don't do that, if you don't know them, you know, a little bit personally, then that's on you because you're going to heal much better if you have confidence in your health care providers.
That was beautifully said, and I could not have said that better. That was just. Thank you so much. Thank you, all three of you, for coming and being with me this afternoon. And it really has been such an honor and a privilege. And Cosmo, just I hope you've got like another 16 at least years and you.
And whatever God has for me.
It got out with me. Energizer Bunny. They are great people, though. They're beautiful and I wish all of our patients could be the this. But everybody's unique. But these guys are great. They're very respectful, but they also have like, Hey, this is my life. This is his life. And give us the options. Let us decide. And that's what it should be.
We're surrounded by great friends.
I love it. Thank you all so much. Until next time.
Thank you. Takes care of my guys. Bye.
If you're a nurse or a nursing student who enjoyed this episode, don't forget to join us on the nurse dot com app where you can find the nurse dot discussion group, a place where we dissect each episode in detail and delve deeper into today's topics. Nurse Dot is a nurse dot com original podcast series, production music and sound editing by Dawn Lunsford, Production Coordination by Rio Wade, Additional editing by John Wells.
Thank you to all the listeners for tuning in to the Nurse Dot podcast. Until next time, keep spreading the love and the care.