Caring for others as she was cared for

Transcript:

Joel

Hey there. I’m Joel Alsup and this is St. Jude Storied Lives.

This podcast gives you the chance to get to know people who have been patients at St. Jude Children’s Research Hospital. I’m one of those people. I had cancer when I was a kid. And now I get to share the stories of St. Jude patients as part of my job.  

St. Jude has been around a long time – more than 60 years. These days, the campus is filled with research buildings, treatment centers and places for families to stay together.  

It looked really different in the 1980s. That’s when I was a patient. Angelique was here then, too. She and I can tell you one thing that hasn’t changed in all those years is the dedication of the medical staff.  

Angelique

My nurse – total sweetheart. She came in one evening and I was awake and she was just speaking to me about my medications, what the side effects would be, what they would be looking for, what I should be aware of, that I would lose my hair. So she set the stage for it, and she set the stage for more than just my treatment timeline. But even when I became a hem-onc nurse specialist myself, I did the same thing with my patients.

Joel

That’s right – Angelique eventually became a nurse herself, specializing in hem-onc – hematology and oncology.  

Even when she was a little kid growing up in Memphis, Angelique was driven to succeed. Her family had high expectations and gave her lots of encouragement.  

Angelique

I was blessed to have parents that no matter what I was interested in, they supported. To the fact that I told my father that I was going to decipher the Egyptian hieroglyphics. (laughs) 

Joel

That's very ambitious as a kid.  

Angelique

Right? Considering that the Rosetta Stone had been discovered way before I was born. He said, “Okay, honey. Great job. Let's do it.” So we go to the library, we get all of these different books about ancient Egypt, and, you know. That was the type of parents I had, my mom was a nurse before I was born. So I was pulling down her medical books and looking at pictures and reading and asking questions. My grandmother was an English teacher in the city school system for 41 years when she retired. 

So yeah, I'm a Gemini.  

Joel 

Me too.  

Angelique

Oh, really? So super talkative. I don't believe in strangers. I believe in relationships. Not networking. I was a swimmer, tennis player. I competed in gymnastics. That's when Memphis actually had an Olympiad gym here that was out in Bartlett.  

Joel

I didn't know that.  

Angelique

So, I trained there. Very, very active. 

Joel 

That's awesome. It sounds pretty amazing. Do you have any siblings or just –  

Angelique

I do, I have a younger sister. We're two years, three months apart. My baby sis my spoiled the baby sister, to this day. (laughs) 

Joel

I know how that is, I'm the oldest too. So I know. I always feel like I got the worst treatment. (laughs) And what were your parents’ personalities like with you being so active? 

Angelique

My dad was a very loving dad. He still is. I still have my father with me. He allowed us to have a voice. You know, in a time where Boomers were still very much the “be seen, not heard” with children. My parents weren't that way. Because my mom didn't grow up that way. As I said, her mother was an English teacher, so it was very much about communicating. 

And so as long as we remained respectful with the questions that we asked, we were more than welcome to ask them. So I rear mine the same way. And sometimes you’re like, look, stop asking questions and just do like I ask. But they were very loving in that way. My mom was, you know, I won't say stoic. She was very loving, very open, very affectionate. But she was the calm in the midst of a storm type of person.  

Joel 

Gotcha. So you have this active childhood. Sounds like you did most everything that you wanted to attempt. But 15, things started to change for you. Can you tell me what kind of started to happen that you thought something might be up? 

Angelique

So I was a freshman. No. Sophomore in high school. As a competitive pom-pom cheerleader, we worked out quite a bit every day after school, and I developed a bruise on the inner part of my left thigh that was really in a non-contact area. And the bruise wasn't resolving like I had been taught it should, even after doing everything I knew to do. 

So finally went to my mom and was like, “Hey, I have this bruise and it's hard in the middle, and I'm beginning to get like these red dots around it.” So she took me to my physician. So January the 12th of 1988, went to go see my PCP. Went through all the assessments and he's like, “I don't know. Let's pull bloodwork.” So pull the bloodwork. He said, “I'll call you if anything comes back abnormal.” We're leaving. Didn't hear them calling us over the PA system. Trying to stop us from leaving the hospital. Went to the Pizza Hut on Highland Avenue. The Memphis State Pizza Hut, right? With the tiger and all the good things.  

Joel

The place to be in 1988. 

Angelique

It was. Absolutely. And my dad was like, “Let me give your grandmom a call because she's a worrywart.” So called my grandmother, and she was like, “Hey, you got to come. They’ve called. They said they needed to talk to you immediately.” And it started from there.  

Joel 

So you get back to the doctor's office. What happens there? What do you hear?  

Angelique

Nothing much happened that night. The very next day, I was introduced to bone marrow biopsies.  

Joel

Yep, I've heard those are fun.  

Angelique

Oh, they are all the rave. They really are. So they did their best to aspirate marrow from my pelvis and the iliac crest. They couldn't aspirate anything, so then they had to tap my sternum. 

I mean, I can deal with a lot of things. Have been taught how to breathe through things. And at that time, I mean, my parents, they were into what would have been called at that time in ‘88, New Age. So breathing, mindfulness, practicing the presence, that's all – everything now. They were doing in ‘88. 

And so, I had been taught how to do those things, but when they tapped my sternum, it all went out the window. Because I felt like my chest literally caved in.  

You know, family all came in. Cousins, second cousins, firsts, aunts, uncles, you name it. We were packed out in that particular room and doctor comes in, talks to everyone then asks to talk to my parents outside. 

And it was at that point he let them know what their preliminary findings were. My mom and dad said he (the doctor) just started bawling because he wasn't quite sure that he would see me again. He let them know he had already made the phone call, and that St. Jude had accepted me on an active protocol.  

At that point, it was AML. Acute myelocytic at that time, they now say myelogenous leukemia. So AML, acute myelogenous leukemia.  

Joel 

So you get this referral to St. Jude. I’m sure mom and dad tell you. As a teenager, what goes through your mind when you hear that you have this rare cancer?  

Angelique

Well, to back up a little bit. That summer, my dad and sister were in my grandparents’ den watching a telephone marathon, you know, for St. Jude. And at that time, they would run the small clips of the children, and Danny would talk, and Marlo would come on, and I happened to walk in like, “What are you guys watching?” And they were like, “Oh, we're watching about St. Jude.” I'm like, “Oh, okay.” So we're standing there, and I mean 15-year-old, soon to be 16, psychosocial maturation level is vanity. (laughs) And so I was like, “Oh my gosh. Oh I don't know what I would do if I lost all of my hair.”  

So fast forward to January, leaving Germantown, headed to downtown to St. Jude. I drove my grandmother's car from the two different hospitals because she doesn't like the interstate. We go in, we sit in the lobby, which is very different. As you know. (laughs) 

Joel

I remember that lobby. I was in that exact same lobby.  

Angelique

It was only – what we had 2, 3 buildings on site? 

Joel 

Yep, two buildings I believe.  

Angelique

Yeah, yeah. So everyone came in and out of the lobby. So sitting in the lobby is when it hit me. That's when it hit. Up until then, I was fine. And they thought they would be able to administer my protocol on an outpatient basis. However, by the end of the day, I found myself in ICU for 30 days. That's how fast just everything went completely awry.  

Joel

And I know you said, you know, it affected your doctor so much they cried.  

Angelique

He did.  

Joel 

How did how did your parents do with the news?  

Angelique

In my presence they handled everything well. You know, that evening admitting into the hospital. They were literally the pillars of security and, we're going to get through this, and this is what we're doing. Years later, you know they shared more. Such as my father telling me about a week into my treatment, they told them that I had 72 hours to live. 

I was like, “Dad, three days?” He was like, “No, sweetheart. 72 hours.” There is a huge difference for anyone. When you hear hours versus days. Which of course, they never told me. For obvious reasons. And then I was just a natural, “Okay, can I get out of here now? I need to get back to school.” I had tests that were coming up I needed to take. 

And so that's where my focus was. Until one day he pulled the covers back and all of my muscle mass was gone. And that took me down a road. They were very good with allowing me to have my moments, but they were just that – moments. They would not allow me to languish. Like, “Okay, I'm going to give you because you deserve it. It’s understandable, but okay. Come on. Time to think ahead. We can't stay here and languish.” 

Joel

Well, and in addition to your parents, I know the care team here at St. Jude can be amazing and very helpful. How was your care team? How did they help you navigate this?  

Angelique

They were amazing. So the first night. Second night. Sometimes, as you know, the days jump. My nurse – total sweetheart. She came in one evening and I was awake and she was just speaking to me about my medications, what they were, what the side effects would be, what they would be looking for, what I should be aware of, that I would lose my hair. I may develop what's called mucositis. 

So she set the stage for it, and she set the stage for more than just my treatment timeline. But even when I became a hem/onc (hematology/oncology) nurse specialist myself, I did the same thing with my patients. I walked them through everything, taught them what their meds were, what we're looking for. Don't fight the fevers. They're a part of what happens. It lets us know your immunity system is doing its best to kick back in, things of that nature, to take a lot of the fear out of it. 

Joel 

Speaking of that treatment plan, what was the treatment like? How long did it last? What did you go through?  

Angelique

Oh my goodness, including ups and downs I'd say about a year and a half. It was a total of six cycles. My mucositis was so bad at one point we had to stop. There were some treatments that I had where they would send you out with the little, pressurized ball so I could go home. I didn't have to stay in, attached to the IV pumps.  

But I will say that one was one of the absolute worst chemicals. I can't remember the name of it at this point. But I couldn't sit up. I couldn't do anything. The world continued to spin no matter what I did, and closing my eyes made it even worse.  

I was fortunate to be one of the first AML protocols where they didn't do the full body radiation. Through continuous research, they realized that it was unnecessary.  

Joel

That's awesome. That was the same for my wife, she had ALL. And she was the first protocol they didn’t do body radiation.  

So we talked about too your awesome, amazing big family who was here. Did you constantly have visitors coming through the hospital? 

Angelique

I did! (laughs) I even have pictures where my first cousins, my mom's twin brother from, California, came out to visit, and they actually could come into the room and sit on the bed and talk and have a great time. And my grandfather's in – you can see him through the picture window of the parents’ suite that used to be attached. 

I hear now they're completely different. And there's a direct access door. Back then, we didn't have the direct access. 

Joel 

Yes, had to walk all the way down the hall and back around. 

Angelique

Exactly. (laughs) So I have pictures of that, when I would come home. I remember my first night home, my cousins and godparents coming over to visit, but also Andre Turner. At that time he was in the NBA and my grandparents were huge Memphis State season ticket holders. 

And so Andre was especially close to my grandparents. And so he knew that I had been diagnosed and he had flown into town and came over that very night to sit and chit chat. And of course – 

Joel

For perspective for the listeners. Basketball in Memphis is a big deal. And Andre Turner is a Memphis legend. 

Angelique

Yes, I mean who wasn't in love with our point guard Andre Turner? I certainly was, right? Teenage girl, Andre was everything. So that was super. 

Joel 

So, you get through this year and a half, ups and downs. Finally finished treatment. Get to go back home. What's it like for you as you get home for those first few days? 

Angelique

Well, being a native Memphian, in between protocols, I would be able to come home, so that was great, being able to come and say, “Okay, treatments are behind me” was fabulous.  

But as you know, getting used to the real world because at (St.) Jude, we are the center of everything. Everything revolves around us. And I would say especially the teenagers, because the teenagers are more aware of what's going on. 

Things were going well in my 11th grade year. Then one particular night, I awakened with body cramps. And tell my parents, “Hey, something isn't right. Keep getting these waves of spasms.” They’re like, “Okay, come on, let's go.” “No, no, no, no, I'm fine. I'll be okay.” But they progressed to the point, I was on the side of the bed screaming. 

So Dad scooped me up. Got everybody in the car. And where do we go? We come straight to St. Jude. So they triaged me, found out that my electrolytes were bottoming out. And they thought that I picked up an infection. But I spent another two months in the hospital.  

Then you fast forward to my senior year. One of the patients that came in the same day that I did was from Peoria, Illinois. We got word – her parents and my parents had become very close, and they called to let them know that she passed. She had relapsed and readmitted. And about three months later, she passed. She didn't make it through. And so I'm coming in from having been out with friends of mine. Now, that scared me. 

I was fearful, so it took a lot to walk myself – because, you know, your parents can talk to you, everyone can talk to you. But our biggest challenge is internal dialog. So talking to myself, all we can do is continue to live a healthy lifestyle, do the things we know we're supposed to, and it's in God's hands. It just is what it is. How do we meet the challenge?  

Joel

Yeah. And it sounded, you know, just talking to you now and listening to everything you're involved with, it sounded like even before the treatment, you were very determined to excel and do well. Do you feel like meeting people and having friends who you lost made you more determined and wanting to excel after you finished your treatment? 

Angelique

Oh, absolutely. Absolutely. I come from a family that are pushers. We set goals. We meet those goals. What I did not do or have not taken advice and just started, is after each accomplishment, enjoying the fact that you have accomplished it. My mindset has always been, especially after, you know, getting through cancer and graduating high school on time with honors and going off to UT Knoxville and doing all of these things – check it, move on to the next. Check, move on to the next.  

It wasn't until I lost my mom in the first semester of my doctoral program. You know, I promised her I would finish. Once I was done with it, enjoying it and feeling the loss. I didn't have time to really feel the loss of mom because I had so much I had to get done. And school has always, I realized, has always been a coping mechanism. Being busy.  

My parents have always called it burning the candle at both ends of the wick. And there are times when it meets in the middle, as I'm sure you know, because we try to fit it all in, right?  

Joel 

Yep.  

Angelique

YOLO. And we know for a fact you only live once.  

Joel

And you talked about it some too, that from the standpoint of just wanting to keep you busy. But what was the main reason you got into nursing? Why did you want to go into that field?  

Angelique

So nursing wound up being my second career. I've worked in a lot of different environments. I was a part of the whole Dot Com in Tysons Corner, McLean, Virginia. I've been an international flight attendant, you know, moving our troops back and forth across the world. Human resources, staffing management, you name it. I've probably done something within the professional environment that was about people.  

For me, it's always been about information, giving information, spreading information and building relationships. So for me, it was a natural progression. And of course, what I had been through, I specifically targeted hematology/oncology because then I could not only be a resource, but also a guide specifically on mindset. 

So, at the hospital where I was on the naval base, we treated our nation's leaders. So our president and all of our nation's leaders. We worked with NCI, which is the National Cancer Institute within NIH and the National Institute of Health, which is directly across the street from us. So I learned with the fellows from NCI, they trained on my ward. 

And with the way that we were set up within the military, the nurses rounded with the physicians, the residents and interns. And we gave report out from our side, as did the rest of the group and the multiple disciplinary team.  

It goes back to the fact of relationships, people, information sharing, curiosity, which again, was set that night in the ICU here at St. Jude Children's Research Hospital, letting me know what my resources are, letting me know it's okay. If I don't understand, ask, be my own advocate. So that set the stage for how I went about working with my patients. And with a lot of them, those who survive I'm still in contact with. I will say one that stood out the most made it through her treatment. She had the exact same diagnosis that I had. And, still great friends with a lot of them. 

Joel 

That's beautifully said. I know. And I know you held all kinds of amazing jobs. What was it that brought you back to Memphis for the longer term?  

Angelique

Oh, I got married. That was the only thing. Trust me. (laughs) Yeah, I got married, and he’s here. Because I was in DC when I met him. I came home to handle some business for my grandparents because I just had that feeling my grandmother wasn't going to make it through the end of the year. The same one that was the English teacher. She had developed dementia, and she and I were super connected, and I just knew. So I came home to get all of their affairs together. 

And so I met him here. Actually, we'd run in the same circle for ten years, had never met one another. Or heard each other's names and that’s how we met.  

Joel

All right. What is life like for you? Tell me about your family.  

Angelique

Super busy. I have two miracle babies, and I call them that because in ‘88, there was no such thing as – well I won't say there was no such thing – as the cryogenics for embryos and eggs. And even in my case, it wouldn't have been time for it. And with the drugs that I had been given, I had been told there was a great possibility – actually I was told that I wouldn't be able to have children. And so I had my son at 39 and my youngest at 44. After I'd been told that I had a 5 percent chance to have her.  

So they are my miracle babies. I am one of those undercover helicopter moms. I give them as much freedom as I can. And then I hide behind bushes and door corners, things of that nature so they don't see me, but I see them so I'm comfortable. Teaching them to be as independent as possible and free thinkers, giving them the same voice my parents allowed us to have, to ask the questions. They are my center. Family is everything to me because without them we wouldn't be who and what we are.  

Joel 

I think that wraps it up perfectly. And the perfect word there is family. Thank you so much for taking time, for being part of this beautiful St. Jude family, for being one of our heartbeats that goes on here. 

Angelique, it was just such a pleasure to get to talk with you and reflect on this time.  

Angelique

Thank you so much. It's been a total honor to even be asked to be here. 

Joel

The St. Jude family stays with you throughout your life… growing along with you. It grows outward, too – when St. Jude patients go out into the world and take what they’ve experienced and learned with them. Sometimes – as we’ve heard – they end up on the other end of a stethoscope. That’s one way the work of St. Jude lives outside this campus.   

Another way happens with your help. If you would, send this episode to a friend – anyone you think needs to hear it. And thank you for listening.  

This podcast is a production of ALSAC, the fundraising and awareness organization for St. Jude Children's Research Hospital. It's produced by Geoffrey Redick and edited by Grace Korzekwa Evans. Music production by Kazimir Boyle. Recorded by Jason Latshaw, Nathan Black, Bobby Mitchell,  Orlando Palaez and Dan Yohey. And I'm Joel Alsup.  

Announcer

St. Jude Children’s Research Hospital understands that every patient’s journey through treatment is unique. Listeners who have questions about their situation, diagnosis or treatment options should talk to their physician. These personal stories are not intended to provide medical advice.

api.spreaker.com/v2/episodes/65485825/download.mp3