Difficult Conversations Podcast
Lessons I Learned as an ICU Physician
Episode 125 | January 5, 2021
My Journey Into Medicine
Certified Physician Assistant
Welcome to Difficult Conversations- Lessons I Learned as an ICU Physician with Dr. Anthony Orsini. Over the years, I have found that healthcare providers who are genuine and able to relate to their patients through their own life experiences, are able to provide the best care, especially during difficult times. Today, I am honored to have as my guest, Michelle Atwell, a mother who managed the diagnosis of the life-threatening illnesses to her daughter and son, and today, is a Physician Assistant at a major healthcare system in Orlando, Florida. When Michelle lost her first child and only daughter, she was driven to invest her grief in the care and cure of other patients battling similar afflictions. She began volunteering with Shepherd’s Hope Clinic, first as a member of the general volunteer staff, and today as a licensed healthcare provider. She in the middle of publishing a contributing article to an upcoming medical genetics textbook and is the winner of the 2017 Nova Southeastern University PA Program Gold Standard Award. As always, Dr. Orsini keeps his promise about two things, that you will feel inspired, and you will have learned valuable lessons to be a better and more compassionate communicator.
Michelle tells us about her journey and the conversations she had with all the medical professionals during her daughter. She shares a specific story of a bad conversation she had with the neurosurgeon about the seriousness of her daughter’s diagnosis and how her life changed forever. Michelle tells us about an uncomfortable incident that happened with an oncologist and some student residents speaking to her daughter as if she was a “specimen.” We learn about a team of doctors at Duke that made her feel that she and her daughter were in good hands. She also tells us about a special doctor at Duke, who showed extreme compassion and stayed with her the whole time. She put all her trust in him. After her daughter passed away in 2003, Michelle tells us how she stayed home for a month, but then decided to go back to her job full time at the bank and go to school full time to stay busy and maintain some normalcy in her life. We learn about the birth of her son in 2005, what happened to him right after his birth, and the doctor who gave her the bad news. Thankfully her son survived, and even though life was looking good after going through some horrible experiences, Michelle decided to see a therapist. We find out what led her to her big career change into medicine, We end with Michelle telling us how she uses the experiences of losing a child while taking care of her patients, how it’s impacted her, and she shares some inspiring advice. If you enjoyed this podcast, please hit the subscribe button to find out more about what we do and how we teach communication. Go ahead and download this episode now!
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Michelle Atwell (1s):
But I try to help them understand that accepting this is necessary. It’s going to happen to all of us. We’re all on this journey. None of us are getting out of here and some of us are closer than others, but the most important thing is, is that we all have to live every single day, the best we can so that we can move forward and have a life that we can say was worth living. And that we are with the people that we love and we care about. And we have a little bit of control at the end, over what we do.
Welcome to Difficult Conversations: Lessons I Learned as an ICU Physician with Dr. Anthony Orsini. Dr. Orsini is a practicing physician and the President and CEO of The Orsini Way. As a frequent keynote speaker and author Dr Orsini has been training health care professionals and business leaders how to navigate through the most difficult dialogues. Each week you will hear inspiring interviews with experts in their field who tell their story and provide practical advice on how to effectively communicate. Whether you are a doctor faced with giving a patient bad news, a business leader who wants to get the most out of his or her team members or someone who just wants to learn to communicate better this is the podcast for you.
Dr. Anthony Orsini (1m 19s):
Well, I am honored today that the Orsini Way has partnered with the Finley project to bring you this episode of Difficult Conversations: Lessons I learned as an ICU Physician The Finley project is a nonprofit organization committed to providing care for mothers who have experienced the unimaginable. The loss of an infant. It was created by their founder Noelle Moore who sweet daughter Finley died in 2013. It was, at that time that Noelle realized that there was a large gap between leaving the hospital without your baby and the time when you get home. That led her to start the Finley project. The Finley project is the nation’s only seven part holistic program that helps mothers after infant loss by supporting them physically and emotionally.
Dr. Anthony Orsini (2m 3s):
They provide such things as mental health counseling, funeral arrangements, support, grocery gift cards, professional house cleaning, professional massage therapy, and support group placement. The Finley project has helped hundreds of women across the country. And I can tell you that I have seen personally how the Finley project has literally saved the lives of others who lost their infant. If you are interested in learning more or referring a family or donating to this amazing cause please go to the Finley project.org. The Finley project believes that no family should walk out of the hospital without support. Welcome to another episode of Difficult Conversations: Lessons I learned as an ICU Physician.
Dr. Anthony Orsini (2m 43s):
This is Dr. Anthony Orsini and I will be your host again this week. Well as many of you already know, it was early in my career as a training physician that I was very aware of how frequently physicians struggled navigating difficult conversations with patients specifically when delivering sad or tragic news. In fact, in my very first podcast ever, which was the only one that I didn’t interview, a guest, I talk about the life changing moment that led me to a 10 year quest to eventually develop the breaking bad news program that started in 2010. And as of now trained thousands of physicians and healthcare professionals across the country. As I mentioned, many times, few people would realize that as a whole physicians and healthcare professionals get very little training on communication skills, especially when it comes to delivering tragic news.
Dr. Anthony Orsini (3m 34s):
One of the reasons that the breaking bad news program is so impactful, I believe is that in addition to receiving feedback from other doctors, the participants also get feedback from nonmedical instructors that have experienced real tragedy and can give real advice from firsthand experience. What I have found over the years is that that communication is all about building trusting relationships with patients. Physicians and healthcare providers who are able to be genuine and learn to relate to their own life experiences are able to provide the best care, especially during difficult times. Well, today I am honored and privileged to have a guest Michelle Atwell.
Dr. Anthony Orsini (4m 16s):
Is it safe to say that few health care professionals possess the depth and breadth of experience in the patient caregiver dynamic that Michelle does. First as a mother managing the diagnoses of the life threatening illnesses to her daughter and son. And now today in her role as a physician assistant at a major health care system in Orlando, Florida. After the tragic loss to her first child and only daughter, Michelle who had a successful career in the banking industry was driven to invest her grief in the care and care of other patients battling similar afflictions. She began volunteering with Shepherd’s Hope Clinic first as a member of the general volunteer staff.
Dr. Anthony Orsini (4m 57s):
And today as a licensed healthcare provider. Michelle is a proud alumni of the university of central Florida with a degree in life and biomedical science and social and behavioral science. And she now has a physician’s assistant degree at Nova Southeastern university. Michelle didn’t stop there. She’s volunteering with beautiful feed international mission teams. She’s in the middle of a publishing, a contributing article to an upcoming medical genetic textbook. She is a member of the American association of physician’s assistants. And winner of the 2017 Nova Southeastern University PA Program Gold Standard Award. Well Welcome Michelle thank you so much for being on today.
Michelle Atwell (5m 40s):
I’m so glad to be here with you and speaking with everyone. Thank you for having me.
Dr. Anthony Orsini (5m 45s):
I was like, you know, I want to say we both work at the same health care system, and by the way, as always, I must disclose that neither Michelle nor I, are representing that health care system and our views are solely our own. I always have to disclose that to make the lawyers happy. Michelle although we work at the same health care system, since you work with adults and I work with pediatrics, our paths really never crossed until I think it was about a month ago. Wouldn’t you say?
Michelle Atwell (6m 10s):
You did a training a few years ago, and I was a guest at the training and I heard you speaking, and I was a brand new employee wasn’t even credentialed to work yet. And it was so interesting to hear your perspective and how you were teaching people to approach patients. And I thought, wow, that’s great. I’m working for this great organization where they are really teaching these doctors how to talk to people. And it’s so important even before I start there, making sure I get this training. And it was really excited about that. And so then I looked you up again, and I saw that you were doing all of this podcast and that you actually had an entire training program. And I was really impressed. And so just wanted to get back in touch with you.
Dr. Anthony Orsini (6m 51s):
That was about a month ago. And we spoke for about an hour and I want to say it was really moved by our conversation and your journey and so will get it. This is right off the bat. I know I’m a big fan of you and what you’ve gone through and, and where you’ve come right now. I would say, I want to say right away that your story was deeply moving to me and is very important to my audience. I liked to have Michelle take you through her journey because, you know, I always promised the audience the same thing that they’ll be inspired and learn communication skills. And today your story is so inspiring. And I think this we’re going to learn so much in the next hour from you, but if you would, let’s just take the audience along your journey.
Dr. Anthony Orsini (7m 33s):
And where are you started with your daughter, Victoria? You were in the banking industry, as I said in the intro, and then your daughter gets sick. So can you just tell us about that a little bit? And specifically as you go through her story, some of the conversations that you had to have with the medical professionals.
Michelle Atwell (7m 50s):
So my daughter was in fourth, it was the summer between fourth and fifth grade, and she was starting to have some issues where she would get sick and throw up a little bit here and there. And I didn’t really know what was going on. And so I took her to her pediatrician and I said, there’s, you know, something going on here. She is starting to feel sick more often. And I had been divorced. I had just gotten divorced and maybe in the last six months before that, and the pediatrician really said to me, you know, it could be that she’s upset about your divorce, or she could be having onset of menses. So it could be just emotional and let’s start with changing her diet.
Michelle Atwell (8m 30s):
So I changed her diet and we went to therapy. I did all the things that you should do it. And it wasn’t Improving. So after about two or three months of that, there was more, now I’m having headaches. Then I’m also throwing up more. And I thought this doesn’t seem right. So I took her back in. I said, we changed the diet. We did everything you said still it’s happening. And she goes, I think your daughter just wants some attention from you so I was doing. everything to give her a lot of attention. And she goes to bed at any rate, lets get you some propanolol which his, a beta blocker. I know nothing about any of this. I was working at a bank and I was very young and I thought, great.
Michelle Atwell (9m 10s):
They gave him her beta blocker. We’re going to take this beta blocker. And that started sometime after Thanksgiving, between Thanksgiving at Christmas, we were having this beta blocker and it helps with anxiety. But and there wasn’t quite so much throwing up. But in the meantime we were noticing that her hands were starting to shake too. And so part of me was the mom saying, well, you’re kind of being dramatically stopped that. But then there was a, the other part of me saying, you need to drink your soup with a straw and instead of having a spoon and so we went home for Christmas and my mom said, this is very unusual. She hadn’t seen us since summertime.
Michelle Atwell (9m 50s):
And so for her to change was so drastic. She is like completely different. Like she’s does it feel well all of the time then I said, what could be the medicine she was taking this medicine? And my mom said, no, you have to go back to that pediatrician. There’s gotta be more than this. So, and so we came home from Christmas break and I went to the pediatrician and I said, my mom insists that something be done. This is not the right answer. And in the meantime, while we’re waiting for that appointment for a neurologist, I had a customer come into the bank and her husband had Parkinson’s disease. I had no idea what was going on with the husband. I just knew that he was this old guy and he had some unusual mannerisms and it reminded me of what I was starting to see at home with my daughter.
Michelle Atwell (10m 32s):
And so I asked her, what, what is it that your husband has? And she goes, well, he has a neurological condition called Parkinson’s disease. And I said, do kids ever get that? So innocently? And she said, no, kids don’t get that. And some of the things he does, the way he’s holding his hands and things are very similar to my daughter. And she said, you have to get that checked right away. And I told her that we had this upcoming appointment. And so we came the day that we went to the neurologist’s office, the neurologist was great. He did his exam, a great neuro exam. And he immediately said, we’re going to send you across the hall or down the hall to get an MRI done.
Michelle Atwell (11m 11s):
And so we went and straight away to do that. And I thought, well, this is unusual. I fought so hard to get here. Now they’re just doing everything right away. But I lived in Vero beach, this was Melbourne. And I thought, wow, I’m in the big city. They are getting everything done quickly. So he sends me down there. And so while they’re doing it, that gentleman that was doing the scan, I was in the room and I thought, well, I don’t know anything about this, but it looks weird. There’s like a butterfly in her brain. And I thought, well, that’s really cool. It looks like there’s a butterfly. Of course my daughter’s in fifth grade butterfly’s are cool. I just think it’s really pretty. And so the guy says, well, we’re going to need to get you some lunch. The doctor wants you to wait here. And then he’s going to have you go back to the office.
Michelle Atwell (11m 52s):
And I say, well, is this normal way that things are done? And he says not usually. Usually, we are able to have people come back and get their results later. And at that point it was kind of dawning on me that this was an unusual progression of a day at a doctor’s office. When my daughter had always been healthy. So I’d never seen any kind of thing like this, where it was, see the doctor, do the test, go back right away, get the results. But he brought me into the room and he said, well, what you suspected was right. There is something that’s unusual. We did find that there is this tumor. And so he starts throwing a lot of big words. That mean bilateral fam thalamic And things that I had no idea what any of this meant. And I said, so you’re saying, and how big is it?
Michelle Atwell (12m 35s):
And he goes, well, it’s the size of a Tangerine. So maybe five to eight centimeters. And of course, I don’t know if five to eight centimeters are. So I’m thinking it that’s a pretty big and is that the butterfly? And so he actually pulled up the, the film and put it on the wall, old school, let me look at it. And he said, yes. And we’re going to need you to go right away to have a neurosurgeon, look at this and as well, is there any way it can be anything else because this doesn’t seem likely she has always been healthy. We don’t have any, we are not, she’s not been sick. And he said, well, how long has this vomiting been going on? And I told them it was maybe six or eight months. And he said, well, that was the first time that really she was having any impact.
Michelle Atwell (13m 17s):
And prior to that, it had been there, but it had been growing unchecked because it was in an area called the ventricles, which are like a Lake or a river. And so there was plenty of room for the growth without really affecting to much of the function. So from there I remember calling my boss, my daughter was super excited though, because she said, yeah, it’s a tumor. I was so excited. It’s not that I’m just really bad at handwriting anymore. And she was making jokes about talking like, Arnold wants to know if it’s a tumor in. So she was very funny. And I remember being in the car and I had to call my boss and say, yeah, so it’s just the tumor I fully expect to be at work tomorrow will be no problem.
Michelle Atwell (13m 58s):
But on Friday they want me to go to Arnold Palmer and I’m going to go have to see this neurosurgeon And but everything will be fine. I’ll be back at work. No problem. And my boss was so wise and she said, how about you? Give me a call back later when everything is kind of settled down and let me know what you think.
Dr. Anthony Orsini (14m 15s):
So in retrospect, if you don’t mind me interrupting, so the neurologist says tumor, at that point, you, you can really understand the severity of it or so you just thought this was a good day.
Michelle Atwell (14m 26s):
So I thought it was a mistake. I really thought it was a mistake. There was no way that my daughter had a tumor number one, number two, just impossible. That It was what he was saying. There’s no way it’s where it is. There is no way it’s that big. The, the pictures were wrong, something was wrong. And I was completely and totally in shock. I don’t remember much of the other things he says.
Dr. Anthony Orsini (14m 52s):
Tell us about the conversation when you first understood the seriousness of the diagnosis with Dr. Was it the neurosurgeon, then
Michelle Atwell (15m 0s):
It was the neurosurgeon. So the next morning I went to school and I took her to check her in and I told the front office, you have to check them in. And I said, she’s got a brain tumor and she’s got to go to this appointment. And I’m kind of in shock. I don’t know what I need to do. And the secretary said, you know, there’s another kid here who has a brain tumor, and I’m going to get her mom to talk to you. And I thought, Oh, this is great. There’s another mom. And so this other mom contacted me and she said that she’d been seen in Boston. And she said, do not go to the local people. This is a Florida, there is no good health care here. You have to go to the Northeast. That’s where all the good health care is in America. He must go northeast and so she sent me up to this neurosurgeon and she did all of the phone calls.
Michelle Atwell (15m 43s):
This mom was terrific. She called the office at Brigham and women’s. She was able to say, this mom needs an appointment. Another friend of hers, the mom bought had her friend donate money and bought me a ticket. Literally we were in Vero beach on Wednesday getting a diagnosis. Then on Friday, we were in Boston at one, o’clock sitting in an office 48 hours later at this neurologist office, this very well-known neurologist.
Dr. Anthony Orsini (16m 12s):
Tell us about that conversation. When he came in and tell you the news,
Michelle Atwell (16m 16s):
It was a very difficult day because he said that he had reviewed the films and that it was a really large tumor. And based on the location that doing a surgery would be impossible. He said that because it was bilateral, meaning on both sides of the brain, that there could be too much damage to the optic nerve, to her cerebellum and that she could have a physical deficits, things that she wasn’t already experiencing, and that they wouldn’t be able to do that. There would be no way for them to debulk the tumor at all. And I said, Well well, how do you know what kind of tumor it is? Or how do we know how bad it is then if it was there for a long time, it’s got to be slow growing.
Michelle Atwell (16m 59s):
So is probably going to be fine, right? What are we going to do? And he said, well, let’s do the biopsy and I’ll be able to give you some more information. And so at this point still, I don’t have a good idea of what’s going on, but we checked into the Ronald McDonald house that afternoon. And that’s when it became very obvious to me that I was now a member of a club that no one wants to be in. And that’s the mom of a very sick, possibly terminally ill child. And that it was going to be very difficult from here on. And so there were pictures of the kids on the wall, kids that have been treated at the same facility and who had seen the same surgeon.
Michelle Atwell (17m 42s):
And there was even a ward of this Ronald McDonald house where the bone marrow transplant kids lived. And so you couldn’t go down there and we would sit at the table and we were eating with children that their hair was falling out in their soup. And they were so sick. And the scared look at the hall of faces of all the other moms and was so hard for me to believe that this was actually really happening to me. And it was just the two of us. I was a single mama at that point. So it was just me and my daughter. And she was my whole world. And I felt that wasn’t going to be the case. And I was super scared. So when he actually did the surgery, the following week, he came from the biopsy and dad had arrived at the time of the biopsy.
Michelle Atwell (18m 25s):
He was there for results and we were in the waiting room and he came out and he says, we were able to get a piece of the tumor. And I said, there really was a tumor? I kept thinking maybe it was just water or a, some kind of cyst. Maybe it’s not really a solid tumor because we were able to get a piece of the tumor and I’ll get that down to the lab. And so this was maybe only five days, six days later, I literally threw up in the floor of the family waiting room because it was so unbelievable to me that it was actually real at that point. And he goes, so I’m going to have to let you know, based on the biopsy findings, how bad this tumor is, and then what the treatment plan will be after that, that will get it over to the tumor board and they will make a good plan.
Michelle Atwell (19m 11s):
And so that, that was that conversation. It was just extremely difficult. He was all in his scrubs and he stayed distant from me. So he was very, to the point it was, we are going to find out, we’ve got some of it. We are going to find out more.
Dr. Anthony Orsini (19m 26s):
And so, as we say, we were teaching the classes, I’m sure you would agree that at that moment, the doctor delivered that news, your life changed forever. And you think it’s safe to say that you remember everything about that conversation? It sounds like.
Michelle Atwell (19m 39s):
Yep. I remember the, the look of the title on the floor. I am going to tell you right now that floor versus any other hospital floor, everything about it.
Dr. Anthony Orsini (19m 49s):
And that started a long journey with Victoria with multiple procedures and chemotherapy. And sadly Victoria passed in November.
Michelle Atwell (19m 60s):
It was 2003. So she fought for 30 months. We went through all of the treatment protocols, chemotherapy radiation. So she was so sad when she got home from Boston. And she realized that we went to the radiation appointment to get fitted for the skull helmet that they wear during radiation for stereotactic radiation. And she was doing all this fitting and she goes, why do I have to do this? I already had brain surgery. And the doctor said, well, they didn’t get the tumor out. And she just started crying. Yeah. I had told her that they took a biopsy, but I guess I didn’t realize as her mom, but I hadn’t said the tumor was not there anymore.
Michelle Atwell (20m 46s):
I did never clarify to her that tumor was still there. So that day she went home and she actually contacted a friend of mine whose husband had been in the military. And she said, can you shave my head? I want the military cut. I do not want to have chemotherapy. She’s 11. And she called my friends and said, I want to cut my hair. And so she got her head shaved because she wanted to go back to school different. And at that time there was this Jim Carrey movie, the mask. And literally when she got the haircut, she goes, somebody stopped me. And she had such a sense of humor. And she goes, Oh, all I need is some really big teeth so that I can really make this work.
Michelle Atwell (21m 27s):
And so she just had such a great sense of humor and realized we were going to need that. And so I really tried to lean into her way of looking at things, but she shaved her head. It was done by the time I got home from work had no choice. So then she started doing things on her own. There was a big field trip for all the fifth graders. And she goes, I planned on going to get Tallahassee and I’m going to right mom? The school was kind of afraid. I said, you know what, nothing bad’s going to happen on this trip or worse than what’s already happening. She went on the trip. We did radiation. The tumor grew, we did chemotherapy. The tumor stayed stable. There were lots of trips back and forth. So in Orlando, I was being seen by a team of a bunch of different doctors.
Michelle Atwell (22m 12s):
And so it was being seen by Neumors so than I was being seen at it. It was called the Walt Disney, children’s it? But it was at what it is now. Advent health is a great doctor there that he was an adult neuro oncologist. There wasn’t a pediatric neuro-oncologist in Orlando. So I was kind of piecing together. This guy does oncology for kid’s. This guy does neuro oncology. So it can put these two guys together. And we have a pediatrician back in Vero who can coordinate some things. So there was a lot of coordinating on my part,
Dr. Anthony Orsini (22m 40s):
A lot of conversations along the way, just to bring it back to there. And when you contacted me about your experience on the patient family side, and now as a physician’s assistant, as I said in the intro, a few people really have that perspective and Medicine on both sides of that. We had a couple of guests, my niece was an early guest and she had, I am so proud of her and she had a cancer and survive leukemia lymphoma, sorry. And this is now a pediatric cancer nurse, but along the way, can you give us some memories of maybe one particular Physician you don’t have to say the name who in somehow made it a little bit better by the way, he or she can communicated it and maybe tell us about a conversation or maybe it was that first conversation with the neurosurgeon.
Dr. Anthony Orsini (23m 29s):
That seems to be because of the lack of communication skills may be made things a little worse.
Michelle Atwell (23m 35s):
So the neurosurgeon was an excellent neurosurgeon. He had a great team, but basically they just handed me back and said, we are not going to be able to do anything more because we’re neurosurgeons and you have a surgery and you’re going to need to contact, some people down there. And that’s when I was looking for who’s going to take care of this. And the one doctor that was just the oncologist, who just didn’t feel real comfortable talking about how we were going to approach this brain tumor. And it was really an inoperable. And I did have a very unfortunate incident happen with them. And that’s what made me look for different practice and why it ended up going to Duke. But he actually said, this is so unusual. May I have students come and speak to your daughter?
Michelle Atwell (24m 16s):
And I thought one or two, maybe, or maybe one at a time. And he sent a pack of students and it must have been eight or 10 residents that came in. And I felt like we were in a zoo. Like my daughter was a specimen that everyone was looking at and it really freaked her out. She goes, is it really is so weird. I mean, is it so bad mom? And I thought, I don’t know. I have no idea.
Dr. Anthony Orsini (24m 43s):
So the doctors really are, I believe are all compassionate as you probably know right now. But sometimes we really have to remind ourselves that Medicine at its best is a human to human interaction. Right. And when I teach patient experience as a Michelle, sometimes, you know, and we don’t mean anything by it, but you’ll see, you’ll hear our nurses and physicians talk about are the kidney patients in three or two and a heart patient in four. And that’s what made you feel that I think your daughter uses the word specimen, is that what she used at 11 years old? That’s remarkable. And then looking back, you go to Duke and was there a particular, I think I know the answer to this. Was there a particular Dr. That just seems to make things a little bit better?
Michelle Atwell (25m 26s):
Yes. So then they have a team, they have this Duke brain tumor group. And so I had heard of these doctors on a, basically like a Facebook group of back then. We didn’t have Facebook. It was some group that we would text each other late at night on the computer. And they were talking about the Friedman’s and these guys would fight for their patients. And so, and I said, wow, I want to be part of this. I want to be fighting this thing as much as possible. And so they had all of the team. And so the doctor would come in and he would explain what was going on. But then he had the child life specialist and the other teams. And he had people who were looking at the lungs and the eyes and the physical PT and OT and neuro-psych, and they were just able to let us know that this affects the entire child.
Michelle Atwell (26m 15s):
In in fact, it’s your entire family. And we’re here to support you in all of these ways. And they really were putting everything together. They even worked with the doctors here and they said, this is who you need to see. And they streamlined the process for us. And they said, this is where you’re going to go. This is who you are going to see. We are going to communicate about these things on our end. You don’t have to, as the mom walk around carrying MRI’s wherever you go. And also the last doctors notes, because I have to have everything with me all the time. This is because doctors weren’t talking to each other. So I felt like I was just the keeper of the information. And I wasn’t being the mom. You know, that I was noticing all the other things that were going on. So when they started coordinating their care and talking to each other, and these doctors were working together and they were coordinated is the biggest thing I think.
Michelle Atwell (27m 4s):
And they were taking care of her and me, and they were making sure that we were taking care of physically, mentally, emotionally, and even financially, they worked with the social workers to help. We’ve got in touch with Ronald McDonald. Your, this is where the address for that is we didn’t have GPS back then. I would drive with my little map. I would write down, I’m going to take the second left and I’m gonna go to this Ronald McDonald house. Then I would walk in and I would say the person’s name. And they would say, yes, we have a room for you. You’re going to be here for three days.
Dr. Anthony Orsini (27m 34s):
What a great experience. You had there with him. I am in my book and then the break and bad news program. And now that you are an instructor, you’ve heard me say this before we talk about the three goals of discussing tragic news. One is to show your compassion, which are clearly, it sounds like that neurosurgeon didn’t have much. Or, and even though the neurologist has brought it up on all the students, but to do is show them that you’re the expert in the room. And as I say, in my classes and in the book that patients should feel as if they can figure to put their arms around your shoulder and you will lead them to the next step in, as you’re speaking, I was feeling really good about myself, because I see just a tiny smile on your face. When you talk about Duke and clearly they had an impact, but clearly It was that you really felt that you are in good hands, right?
Michelle Atwell (28m 21s):
Absolutely. No one had told us before what the prognosis was. It was Duke. And I was already maybe four months into it. At the point I got in touch with them, like, what’s the prognosis? What does this road look like? What do I have to do? What can I expect to happen? And no one had really sat down and giving me a comprehensive look at that. Everyone had told me there are parts. The surgeon was excellent, but it was all about, this is what you can expect after the surgery. This is what we can do. The radiation oncologist. This is what radiation I was like, and this is what we do after that. But Duke was able to give us the entire perspective of what all of it look like, the good and the bad. And I think that was the biggest thing was he didn’t shy away from the fact that we are getting ready to go into a very difficult thing.
Michelle Atwell (29m 7s):
And it was going to be really hard, but that we weren’t doing it all alone. And it wasn’t just giving us a tiny bit in saying, this is fine. We’ve got this one part, but we are not going to tell you all the rest of it. We really knew what it was. And we were able to look at the thing and say, OK, so we’re going to do all of this. And we could still have a really bad outcome, but along the way, there’s going to be these supports. And we are going to be in this guy’s trusted hands. And that guy was with me the whole time. And he’s now in Florida. I’m so happy that in Florida, when I found out he came to Florida, call them and I thanked him for coming here.
Dr. Anthony Orsini (29m 46s):
You can say his name.
Michelle Atwell (29m 50s):
Oh, good, Dr. <inaudible> If you’re out there,thank you. He is at university of Florida and now, and he’s running they’re neuro oncology center there. Fabulous at Shannon. So, so happy that he’s here and we’re having this care available in Florida because I was literally driving my old Honda, you know, 850 miles each way. But when she got really sick at the end and we were changing so quickly, I would just have to get to Duke. Well, I have to have the doctor at, Duke see her to tell me what’s happening. It was a seizure that signaled the end, that there was a big change. Something happened. She wasn’t speaking correctly anymore. I now know that it’s called word salad and that the brain tumor had grown a lot And.
Michelle Atwell (30m 35s):
So I even remember calling him and he answered his phone on a Saturday morning, and he was at his kid’s soccer game. And I said, is hospice the right thing to do now, is this what you would do? And he said, you have done with everything else that you could do medically. And as a mom, this is what you can do. And it’s okay to do that. And I felt like I needed his permission to give up because he had fought with me so hard for so long. It was almost three years. I saw him every 10 weeks for three years when he was part of my life and part of my family. And I just felt like he was just taking care of us.
Dr. Anthony Orsini (31m 7s):
And you said that you needed his permission. And I think that’s many of the, that happens a lot when we’re dealing with end of life. We’re going to have Dr. Knops on in a few weeks and Dr. Knops Is one of the most amazing palliative care people I’ve ever met. And I learned a lot from her, but in the NICU and even in the life, when we teach about end of life discussions, many people are in fact looking for permission, not that they need our permission, but they need somebody to say, who’s the expert in a room once he established with you that he was the expert in the room, but to say, that’s okay, it’s a loving thing to do as a parent. And so it, it’s amazing that you said that.
Dr. Anthony Orsini (31m 47s):
So sadly, Victoria passes on November 14, 2003, I can’t imagine how difficult that must have been for you. And then you try to get through this. You are still a banker at this point,
Michelle Atwell (32m 0s):
Still in banking. So luckily when all of this has happened to you, right? Remember September 11th, I also happened and I had been working at the bank a really long time. So I had had a lot of stock and I cashed out my stock right before September 11th happened because I needed to pay and be out of work. So had cashed out my stock. When I think bank of America was 60 something dollars a share. So really high. And I had a nice little nest egg of money. I had gone back to work while she was sick in having chemo. But for the first, maybe for six months, I was out. So I had this money and I was able to take some time off. But after she passed November, I thought I needed to be home.
Michelle Atwell(32m 43s):
And I was home about a month and I couldn’t be home anymore. And I got in touch with a friend of mine and she said, we need you back. We need you to come back to work. And I said, I don’t think I can do it. And she goes, we are here where your team were. You can come back in. So I went to work for a smaller community bank with people who were my friends. I was very happy to be there. And so I worked full time all day, Monday through Friday eight until 5:00 AM and until six on Fridays. And then I also went to school full time. And that was just taking some classes I did not ever want to have one minute of my day, that was not occupied. So I went to school full time and I work full time.
Michelle Atwell (33m 25s):
And I just, I went from bed to work, to school, to bed at four to six months, try to keep busy, staying busy and just trying to put one foot in front of the other and maintain some semblance of normalcy in my life. And so that was a very difficult or recovery. And
Dr. Anthony Orsini (33m 43s):
Then in September of 2005, what happens is that summer of 2005.
Michelle Atwell (33m 49s):
So I met and got married to the most wonderful husband ever 16 years now we’ve been married and I was pregnant. And in September I went into labor a couple of weeks early. And so our little boy was on the way. And we were so excited. We went to our local hospital, we had done our hospital plan to have him. There was absolutely no indication that there was going to be anything but a normal delivery. I had a normal delivery of my daughter. I thought it was going to be a, just a perfect delivery. We went to the local hospital and when he was born, usually there’s that moment, you know, they kind of cut the cord and they hand you the baby. And I was so looking forward to that minute, I had been without my daughter, as herself, since 2001.
Michelle Atwell (34m 35s):
So this is 2005. It’s been five long years. Here’s this baby. And I am going to hold this baby. And they didn’t hand him to me. And I’m like, what is happening? They should have handled the baby in my husband is the first time dad. So he doesn’t know what’s happening. It was like, I don’t know if there’s a bunch of people over there. And I said, what kind of people are they? What are they doing? And he goes, they were putting a mask on him and they say, well, he shouldn’t need a mask. He’s a newborn. And I couldn’t remember, did he cry? Did he cry? And they said, yeah, he cried. And so I asked the nurse what happened? You know, when his apgar was great, he was at 10, but then he drops really suddenly. And I had no idea what they are talking about it. I just knew that something was wrong. He’s not getting enough oxygen.
Michelle Atwell (35m 17s):
I thought, well, there’s not been a problem. I’m advanced maternal age. I’ve had these scans the whole time and there shouldn’t be a problem. This is a perfect baby. They promise me all along. I did all the testing to make sure everything was fine. If that was not the case. So they put him with oxygen that we weren’t allowed to really hold him. He was in a box. They moved him into some special unit. I’m just struggling to understand what’s happening. My OB doctor comes in and I said, what happened? It was a perfect pregnancy. I didn’t have any problems. I mean, I had to do a blood thinner. I G I gave myself a shot every day for nine months. So I could have this baby and everything’s should be fine.
Michelle Atwell (35m 57s):
And when they said that there was something wrong and he was blue, he was a blue baby. And I says, well, why what’s wrong? Has it his lungs, there are always fine at, and they said, no, it’s his heart. And I thought that this is impossible. I did everything. I did everything I was supposed to do. And so they said that they were going to change him to a different hospital. They were taking him downtown to the hospital, where they had some pediatric doctor who could help him because the doctors in the hospital where we were really didn’t know what to do. And I thought, well, this is impossible. I can not go through this again. I just went through this. I cannot have this happen to me again, too
Dr. Anthony Orsini (36m 37s):
Much, too much.
Michelle Atwell (36m 38s):
And I thought, well, I can’t not be in this room. I can’t be here. I can not have my son in another hospital if I’m not there. And so at this point, I did learn a few things on my previous. And I said, I want to know exactly. I started asking the people in the unit, who’s the best person to go to for this kind of problem. If this was your kid, where would you send them? Who has the best outcomes? What are the typical survival in a situation like this? I want to leave AMA right now. I want to go in. And of course there is a whole lot of pushback. No, it hasn’t been wasn’t even in three hours. I don’t think And so meanwhile, my son has put into an ambulance and he’s taken downtown and I’m still there.
Michelle Atwell (37m 23s):
And I am convincing everyone that I am leaving. Whether they gave me permission or not, I call it the OB doctor. And I say, I have got to go. I can’t, I can’t not be where my sonis. If he is going to leave this world I’m going to be in the room. I’m going to be there with him. I have to go. And so he signed papers. Then I was able to go in. So we went downtown and we met Dr. Garcia. He’s a pediatric cardiologist. And he’s amazing. He came into the room and he was so it’s been a long day for you. I said, yes, definitely. He is. I can’t believe you were able to get here. And I say, well, thank you. And it was so as your son got here this afternoon, we were able to do the testing. And here’s what we found.
Michelle Atwell (38m 4s):
Big words. Again, lots of them. We have a transposition of the great vessels. There is one thing is going over. The other thing that your son’s blood isn’t going out into his body. It keeps re-circulating the oxygenated blood into the lungs to the heart, but it never goes through the body. So this incompatible with life is incompatible with life. And he goes, and I said, well, where, what, what do we do now? And then he said, well, we have surgeons. You can go to Tampa or you can go to Miami. And Tampa is closer and families closer. And as well, I want to know about the outcomes, all these questions that I asked earlier of the team and our ultimate, they ask the exact same questions and they recommend a We that Tampa had a very good outcome.
Michelle Atwell (38m 48s):
So that in Miami, just to make a choice, whatever is most convenient for your family. But he’s took the time to sit and draw the picture of the heart. For me, show me where the vessels we’re going to tell me exactly what the surgery would look like. How many surgeries this surgeon had done. How are these outcomes are all of the patients that he has to come back from this and how he treats them until they’re adults and even into adulthood and all of the good outcomes that he had. And I thought, okay, I believe you I’ll sign the papers. So my son can go to another hospital for all of this next part.
Dr. Anthony Orsini (39m 30s):
And so To Tampa, he has this surgery or more difficult conversations. I can’t imagine what your thinking right now, if that would help you in the Victoria.
Michelle Atwell (39m 39s):
Yep. So this was Lucas of Lucas is the boy and he’s born. And he is Victoria’s first brother And. So Lucas was so amazing. He was just so beautiful. And that the doctors start explaining what about surgeries? Surgeons are so different than all the other doctors may know exactly what they are going to do. And it’s so clear to them what’s going to happen. And they have these conversations all the time, but it just seems to me like they are so familiar with it. They don’t realize how hard it is for us to imagine that they’re going to take some tool and they’re going to cut right into your kid.
Michelle Atwell (40m 21s):
And that somehow we’re supposed to believe that it’s all going to be OK. And then at the end of it, you have to sign a paper saying, but if it isn’t and I already know that if I already know that this may end in death at the end of all of them it’s and death. And it’s a really awful as a parent to have to, to say, I know that this could lead to death, but I’m counting on you that it’s not going to be. And it’s not, I don’t believe it’s really in the doctor’s hands. I mean, I know we do everything we can, but at some point, but it’s much higher than us and things will go the way they are going to go. But Dr. Do the best that they can.
Michelle Atwell (41m 1s):
But he, they came in and he was, he told me about the patients that he saw and the great outcomes that he’s had. And I just felt really comfortable. And he warned me. Thankfully about what after surgery was going to look like, because that’s what you can not be prepared for all the tubes and the swelling and your kid doesn’t look like a baby anymore. And it’s an awful thing. It will look like some kind of a freakish Halloween.
Dr. Anthony Orsini (41m 34s):
So tubes or coming Out everywhere, there’s lines there. So Lucas comes home, but on his due date are basically so wow. What a great story that is. I mean, think, thank God it, it worked out, but I, I can’t imagine what you went through a second time, but you have been through the ringer to say the least and unimaginable pain, bad obstacles to go through with health care of your children. And many people would say, I never want to see another doctor again, and I never want to enter hospital again, but you did something quite differently.
Dr. Anthony Orsini (42m 18s):
What you decide that you want to go out and help people. And so how do you go from those two really horrible experiences? And Thankfully look, he is doing well.
Michelle Atwell (42m 28s):
Yes, he’s doing great. 15 years old and Jacob and I do what Jacob is almost 13. So two very healthy boys that enjoy life and are very active in, which is a good thing.
Dr. Anthony Orsini (42m 38s):
So Now you have a conversation with yourself. You say, Michelle do I want to do that?
Michelle Atwell (42m 43s):
And with a therapist as well. So After Jake between Lucas and Jacob. I was okay. It seemed like everything was fine and there’s about two years difference. But when Jacob came along, I started really going through the stages of grief that had a perfect life. I lived in a perfect home. I had a great husband, two beautiful children, and yet there was this sadness and I thought, what is going on? Why can’t I just be happy? I should be happy. I have everything I could want and everything I never thought was possible. And why can’t I be happy? So those are seeing a therapist and part of the, a therapy was really looking for, and she would say, well, we have to look at this.
Michelle Atwell (43m 24s):
And so I would look at things and I would say, it doesn’t make any sense. None of this makes any sense. I don’t understand. And she says, well, have you found you again then? Because I had been seen as a single mom working and everything and used to be doing my own thing. And I was a stay at home mom at that point. And she goes, well, what do you do? That’s just for you. And the answer was absolutely nothing at all. It’s really hard to be a stay at home mom. So shout out to all of the, stay at home moms that are out there finding their way, especially after maybe you’ve had a very successful career. It’s very challenging. So my therapist said, well, you’ve got to do something that’s just for you. And I thought, well, I want to learn about this brain tumor thing. How did this happen? And it was such a shock to me. And how did I not know it was the mom guilt?
Michelle Atwell (44m 6s):
Or why didn’t you realized something was wrong, six or seven months sooner, you could have done something better. So I go over to UCF and it was great. I said, I would like to be a non-degree seeking student. And I just want to take this class on neurobiology. And it’s a junior level course. And the reason I had to be non-degree seeking as I didn’t have a medical or a pre-med or any of the prerequisites needed, and they wouldn’t let me take the course. And I said, well, I’m not degree-seeking. I just, just wanna sit in and find out what this is all about. And I said, well, okay. And I did great. And I really enjoyed the course. And so I thought, well, this is neat. I’ll take another course or too. And so I started taking these courses and found a lot of Information.
Michelle Atwell (44m 47s):
So you guys learn a lot in medical school. So I am like, well, this explains everything. I can see exactly all the things they should have done. And I kept taking the classes, I got to be in a lab. I got to see brains and pathology. And it was really exciting. And at some point along the way, one of my professor said, well, your here with all of these pre-med students, what school are you planning on going too? And I says, Oh no, I’m just not going into medicine. So I’m not going to be doing that. And he said, well, you really need to do that. And luckily, everybody knows Dr. Sam Because. He teaches over at UCF and everyone has to get through his anatomy course in order to become a doctor. And everyone knows that.
Michelle Atwell (45m 27s):
So he really encouraged me. He said, you should do it. And I said, I have two little kids at home. And with my tragic loss, I didn’t want to waste time. I did. There was not enough time to spend with them anyway. So I was only taking a couple of a class two days a week when they were in school. So I didn’t want to waste their time. But as they were getting older, they were going to day school, a couple, two or three days a week, and I would go to school. And so I’m part-time and no one’s part time. Pre-med everybody knows when you are. Pre-med. If I wouldn’t say that to me, how are you doing this part time? And I say, well, if it works out and if it does, and I’ve learned a lot, so I just kept going. And at some point, the banker in me says, is this financially worth the time and effort you’re putting in.
Michelle Atwell (46m 10s):
And you’re about to spend a lot of money. And I said, okay. And so I had to sit down and make the spreadsheet. And I decided the best thing for me to do was take the courses that can get me a job in health care that I can find out. So I started volunteering. That was a Pat and those doctors were like, you should do it. You are missing nothing, but it was an outpatient clinic. And there wasn’t anything terribly tragic going on most of the day. And so I said, I’ll go be a scribe at an ER. And if I can take that blood on, probably could do. Okay. And it was bloody. And there were people coming in there with all kinds of situations. And I was so happy and I realized that the reason I was so miserable and the bank it’s, I had gotten used to the level of urgency that was possible in that environment.
Michelle Atwell (47m 0s):
And also knowing what to do, seeing this situation, handling this situation that I got used to it. I really got used to the flow of a hospital, the beeping, the everything. And I missed it when I was not in a hospital, but I didn’t want to be sick anymore. I didn’t want to have a sick child. I just wanted it to be there. And I was going to do it no matter what. So when I interviewed for the PA program and one of the doctors that I was interviewing me so well, you already are a very successful person. You have this career, or you have these children in obviously doing well in your personal life. Why would you come and do this? Why would you put yourself through what you’re going to go through to get this degree? And I say, well, here’s the thing I’m gonna do it.
Michelle Atwell (47m 41s):
Whether or not I have a degree or not, and I will volunteer forever, but I am going to be helping people one way or another, and I’m going to do it, whether I’m getting paid or not, because I’m okay with that. I can do it for free, but this is what I’m going to do. And that was a sufficient enough answer. And my interview, well, there were a whole bunch of other questions, but that was, I think the one that really made me decide right then and there, that whether I got into that school or not, I was going to continue helping people. And I had already been doing all of the things I had done fundraisers in for the national children, cancer society for a March of dimes, for a brain tumor center, for all kinds of fundraisers. But this was where I want it to be. I was going to be helping one way or another.
Dr. Anthony Orsini (48m 22s):
That’s fantastic. So you can get your PA degree. We are running at a time. So I want to get some real good advice that you get your PA degree. And now your PA in treating congestive heart failure, cardiac adults. And as I said, in my intro, a few people have the experience that you have of that can really help your patients for the physician. The nurse is the PAs and NPS nurse practitioners, all the people out there that treat patients. And many of us don’t have the experience that you have, and not as much more fortunate than you are. We, most people haven’t had the experience of losing a child. How do you use that? In what advice can you give to people after you’ve had all these conversations good and bad is a great experience at Duke other experiences, not so much.
Dr. Anthony Orsini (49m 11s):
How do you use that? Michelle if at all, while you take care of your patients, how do you think it’s impacted you?
Michelle Atwell (49m 16s):
I look at every single patient and family as if it were me and my daughter or me and my son. And I think about where they are in the process. So some of them are newly diagnosed, so it’s a brand new, fresh there, scared to death, and they just need someone to let them know what the road looks like. Some of them have been at it a while and they’re tired of fighting, or they’re really used to how things are going, but they’re kind of scared about what the future looks like. And I want them to understand what those outcomes can look like. And then I’m there, I’m a fighter with them. And then I’m also there end stage. And I help a lot of patients and their families understand that we’ve come to the point where I am doing everything I can in.
Michelle Atwell (49m 57s):
You’ve done everything you can. look at the outcome that’s happening now is we need to prepare for the next stage. And that is where I try to really let them know that it’s okay to stop fighting because children will try to make their parents stay in fight longer. And it’s really hard for the parents because they don’t want to let their kids down. And husbands don’t want to let their wives down. And they feel like its a losing battle that I try to help them understand that accepting this is necessary. It’s going to happen to all of us. We’re all on this journey. None of us are getting out of here and some of us are closer than others. But the most important thing is, is that we all have to live every single day.
Michelle Atwell (50m 42s):
The best we can so that we can move forward and have a life that we can say was worth living. And that we are with the people that we love and we care about. And we have a little bit of control at the end over what we do.
Dr. Anthony Orsini (50m 59s):
That’s just so beautifully put and I wish this were a video podcast. We can see your face because there’s so much authenticity to your facial expressions in whether you choose to share your journey with your patient or not. When you speak about the decisions that need to be made in the journey. And just when you speak about allowing people to have permission, your face really says it all Michelle, you can see there is some genuine credibility to what you’re saying and your tone of your voice and through this really difficult journey of yours and that’s a true gift that ends up for your patients. And that’s why we said in the intro, how it was really a fan and I’m really in awe of where you’ve come from to where you are now and your patience through your going to school for PA at withtwo children after all of that, your patients are really the ones that are really getting the benefit of that.
Dr. Anthony Orsini (52m 1s):
And so that’s really just incredible. This has been an inspiring story. Michelle is now going to be working with me. It just so everybody knows and the breaking bad news program. And she will be teaching physicians in healthcare providers alongside of me, teaching them from both the patient family point of view, but also from the doctor PA point of view. And that is a gift that she was going to be giving to all these doctors that we train. I’m really privileged and honored that you have chosen to work with me and honor that you have agreed to tell your story today that you have shared with me before that this is a difficult time of year for you as many people with a loss.
Dr. Anthony Orsini (52m 44s):
And I want it to be sensitive to that. And I appreciate that you are willing to tell your story for the benefit of my audience and for any other patients, family members that are out there going through the losses. So this has been an amazing hour and I just want to thank you so much for being on this episode and really do. Is there anything you want to say before we close out,
Michelle Atwell (53m 9s):
Be safe over the holidays and enjoy the time with your family? Even the things that are awkward end up being the fondest memories that you miss.
Dr. Anthony Orsini (53m 17s):
Thank you, Michelle so much. We really appreciate having you on. If you like this podcast, please go ahead and hit subscribe to tell your family and friends about the podcast. Go ahead and download all the previous episodes if you want to get in touch with me. You can reach me at the Orsini Way.com and we are going to be here at each and every Tuesday. So hit subscribe. Now, Michelle, thank you so much. I hope to see you real soon and I’ll be praying for you during the holidays and enjoy.
Michelle Atwell (53m 40s):
Yeah. Well thank you Tony and you as well. Thank you.
Dr. Anthony Orsini (53m 44s):
Well, before we leave, I want to thank you for listening to this episode of Difficult Conversations Lessons I learned as an ICU Physician and I want to thank the Finley project for being such an amazing organization, please, everyone who’s listening to this episode, go ahead and visit the Finley project.org. See The amazing things they are doing. I’ve seen this organization literally saved the lives of mothers who lost infants. So the find out more go to the Finley project.org. Thank you. And I will see you again on Tuesday.
Announcer (54m 15s):
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