Understanding the care in palliative care

This week on Health Matters, Tarah Schwartz discusses our changing understanding of palliative care with Dr. Genevieve Chaput. Dr. Ben Smith shares how thinking big led him to try and reprogram the lungs to fight back against COPD. Dr. Deborah Assayag explains how patients help inform research into a group of diseases known as Interstitial Lung Disease. And, Michael Goodman was inspired to share his own cancer experience after hearing other patients share their cancer journeys during our World Cancer Day campaign. 

Cette semaine à Questions de santé, Tarah Schwartz discute avec la Dre Geneviève Chaput de l’évolution de notre compréhension des soins palliatifs. Le Dr Ben Smith explique comment le fait de voir grand lui a donné l’idée de reprogrammer les poumons pour lutter contre la maladie pulmonaire obstructive chronique. La Dre Deborah Assayag partage le rôle des patients dans la recherche sur un groupe de maladies appelé maladie pulmonaire interstitielle. Et Michael Goodman partage sa propre expérience du cancer après avoir entendu d’autres patients partager leur parcours à l’occasion de la Journée mondiale contre le cancer.

Transcript

Tarah Schwartz: 0:00

Hello there. Thank you for joining us. I'm Tarah Schwartz and this is Health Matters on CJAD 800. On today's show, our lungs are incredibly important and yet it is easy to take for granted just how vital they are. Later in the show, we speak with two scientists from the Montreal Chest Institute, who are working to understand how to develop better treatments for patients with chronic lung conditions. To begin though, did you know that palliative care as we know it was founded right here in Montreal, Dr. Balfour Mount opened the country's first comprehensive Palliative Care Center at the Royal Victoria Hospital in 1975. There have been many evolutions in the field since it was first created with a better understanding of the need for the -care- in palliative care, Dr. Genevieve Chaput is head of the palliative care unit at Lachine Hospital and she joins us now. Good morning, Dr. Chaput.

Dr. Genevieve Chaput: 0:56

Good morning. Thank you so much for having me.

Tarah Schwartz: 1:00

You are so welcome. So what do you think when you hear that it was founded in 1975 by Balfour Mount and now you're leading an incredible palliative care unit at the Lachine Hospital? So much has happened between 1975 and now what does what does that bring up for you?

Dr. Genevieve Chaput: 1:17

They bring up a sense of pride that we're continuing the legacy. I think it's important that people realize that palliative care to this day is not universal. And I think we need to continue advocating for its universal access.

Tarah Schwartz: 1:31

What was it that inspired you to pursue the area of palliative care?

Dr. Genevieve Chaput: 1:38

That's a tough one, my decision was heavily influenced by the death of a very close friend of mine at the age of 19. Obviously, losing this friend was very difficult; not just for me, but also his family and his friends. It made me realize how precious life is and how unpredictable. If one is going to go through such a difficult situation, the very least is to make sure that they have access to the proper support, the proper care and that is through supportive and palliative care. This is why I decided to work in this field and this is why also our Lachine palliative care team works very hard each day at making sure that we provide services to those people who are going through such a difficult time.

Tarah Schwartz: 2:24

That was a lovely answer to a difficult question. But let me ask you this, Dr. Chaput, I know that the definition of what palliative care is has evolved a lot I guess is the word. How do you define it? How do you explain what it is now?

Dr. Genevieve Chaput: 2:39

The definition of palliative care is usually quite scary to people who may not be working in it like I do. People associate palliative care with the word death and the end of life. It is so much more than that. I think we need to work on remembering that in palliative care, there's the word care. That's the word that we really need to focus about. So what we do is we provide support, symptom management, accompaniment. Not only for the person who's going through the difficult time relating to their health, but also their loved ones, their family members. We take care of people from the moment they're diagnosed. And yes, of course, we provide care for people who are at the end, but there's everything in between and we need to remember that.

Tarah Schwartz: 3:23

We're speaking with Dr. Genevieve Chaput, the head of palliative care at Lachine Hospital. I was going to ask you that when does... I think with my experience with palliative care when my father passed away. Palliative care was brought in very late in his diagnosis. It was brought in after everything was tried and the doctor said, Okay, there's nothing more we can do. We're going to call in palliative care. That's when palliative care was introduced to us. But I have heard you and others say that you feel it needs to be brought in much, much earlier.

Dr. Genevieve Chaput: 3:53

I get a little wince when I hear you say that. Because this is an example of why we need to continue advocating for what supportive and palliative care is. The studies are very clear. People benefit from being followed by their physician who may give them active treatments such as chemotherapy or immunotherapy, but also with the supportive and palliative care team at the same time, because we do so much more than just the endpoint. And I hope that people will continue to work on having joint care with active care and also supportive care because the two and two are together as one. There's no such thing as a silo care. So we need to work on that.

Tarah Schwartz: 4:35

And so for people who are listening, who may be going through this now or may go through it in the future. Is this something that they should be vocal about now that they're listening to you and understanding that palliative care needs to come in early? Or is this something they should be asking for?

Dr. Genevieve Chaput: 4:50

Absolutely. I'm glad that you brought it up. I think that people even though they may be scared about what palliative care is; they should absolutely advocate. They have a voice and they can say it. I tell that to patients that I take care of all the time. I'm so glad you came, or I'm so glad that you request it to be seen by our team. And I encourage you to tell people about it. As I said, usually when I see someone in the clinic for the first time, they're a little bit scared. Oh, my goodness, palliative care, we're going to be probably discussing death. Surprisingly, we're talking so much about life. It's about how well do you want to live until you die; most of the times. Not everybody is going to pass away, some people are going to go through a life-threatening illness, and they will recover and supportive and palliative care will take care of you too. So absolutely keep advocating. Keep advocating very hard for your right to receive this important care.

Tarah Schwartz: 5:42

That's great to hear, Genevieve. Now I know honoring each individual patient is an important part of your philosophy. Tell us why that is.

Dr. Genevieve Chaput: 5:51

Oh, that's easy. That's because patients are first and foremost, human beings. Because people that we call caregivers, or family members, they're also human beings. And that's why it's important to honor each individual patient because they're human. In supportive and palliative care, we don't ever treat a disease. We don't ever treat a diagnosis. We see a person first and foremost. And if you see the person, you will be able to take care of them so much better than if you just see their disease. And that's why it's important to honor personhood and we take pride at the Lachine Hospital to do that to honor personhood. It's at the core of every intervention. And every interaction that we have with the people that we take care of.

Tarah Schwartz: 6:36

Dr. Genevieve Chaput is head of palliative care at the Lachine Hospital. I love hearing you talk about palliative care, Dr. Chaput, because you speak about it like it is something you were meant to do. I don't know... Do you feel that way? You're so passionate and so inspired when you talk about it. Where does that come from?

Dr. Genevieve Chaput: 6:57

Oh, my goodness, there is stuff that is going to be very difficult to answer. But one thing that comes to mind is, it's not just me who's working in this service. I am one part of a very big, caring, dedicated and competent team. Together as one, we provide this care. I'm inspired to see how everybody understands that the core with palliative care is which is to really take care of you, as a person first and foremost and what do you need. It brings back a lot of the literature that has been out about the 10 golden rules of life. Treat people well. But in palliative care, it really is, teach me how I need to take care of you and that's what makes all the difference. That's why I'm inspired to do that. Because I think it's important to take care of people the way that they need to be taken care of. No assumptions on our part.

Tarah Schwartz: 7:52

I love that, no assumptions. Now exciting news for the palliative care unit at the Lachine Hospital which is already a revered area of the hospital. It is part of the Lachine Hospital's expansion and modernization which is going on right now. How excited are you about this process? And what can people expect once the renovations and the modernization is complete?

Dr. Genevieve Chaput: 8:18

Yes, we're very excited about the modernization project at the Lachine hospital. Beyond the increase in the number of the palliative care rooms that we will have, the modernization project will also give us the ability to offer increased services in the outpatient setting- people that need to come and see us in clinics, people that need their help with some pain management or other types of symptoms such as nausea, people who need some psychological support. It's exciting to have this modernization project ongoing because it is greater access to the services that we already provide. As I've mentioned to this day, palliative care is not universal, but it should be. We have birthing centers. We always have a space for someone when they're going to give birth. I think it's about time that we start thinking about a full circle of life, and that the end of life is just as important as the beginning of life. And we need to provide that. The modernization project will just bring us a little step closer to increasing that access to these essential services that are required.

Tarah Schwartz: 9:23

The Lachine hospital, your staff, and all of your patients are very lucky to have you. Dr. Genevieve Chaput, thank you so much for joining us on the show today. It's a pleasure to talk to you.

Dr. Genevieve Chaput: 9:31

Thank you. Thank you very much.

Tarah Schwartz: 9:34

Next up on Health Matters, philanthropy helps innovative research get off the ground. Hear from a researcher who hopes to reprogram your lungs with a new study. I'm Tarah Schwartz. Welcome back to Health Matters on CJAD 800. We are very fortunate in Canada to have access to some of the world's best doctors right here in Montreal. But did you know that often philanthropy is the jumpstart that doctors and researchers need to get their research off the ground. It's an important piece of information the average person might not know. Because while the government does offer funding for innovation in health care and research, it wants to make sure that research shows potential first. And that is where philanthropy steps in, to give researchers the resources they need to think completely outside of the box and test things first. One of the ways the MUHC Foundation helps is through the Trottier Webster Award, which was given out to Dr. Ben Smith this year. Dr. Ben Smith is a scientist in the Translational Research and Respiratory Diseases Program at the Research Institute of the McGill University Health Center. And he joins us now. Hello, Dr. Smith.

Dr. Ben Smith: 10:43

Hi. Thanks for having me.

Tarah Schwartz: 10:44

So congratulations on being the recipient of the Trottier Webster Award. What does that like for you?

Dr. Ben Smith: 10:53

It's a great honor. It's also exciting for myself and my research team. The reason being that, we do a lot of research here some research is incremental, meaning it's moving the needle slowly but surely in the right direction. But sometimes, there's an opportunity to really think big and be ambitious. That's what this competition was about. And so I'm really excited to share with you what we're planning to do.

Tarah Schwartz: 11:28

Well, I'm excited to hear about it, especially considering how you set it up. You thought big and you were ambitious. So tell us what did that entails, what was this research about that got this award?

Dr. Ben Smith: 11:43

We started with three considerations. One was, what's a big problem out there? Two, was what's a really innovative or recent technique that we could try to apply to this problem? And the third was to see if we could really take a leap forward using this opportunity where they wanted breakthrough ideas.

Tarah Schwartz: 12:15

All right. Step one was what's the big problem out there. So what is the big problem out there?

Dr. Ben Smith: 12:21

In our field, respiratory diseases, while there's many acute lung problems that can occur; chronic lung diseases are really a major problem. In particular, a disease known as chronic obstructive pulmonary disease, or COPD is a major burden globally. It's the third leading cause of death. About 10% of people over 30 live with this condition and it's associated with reduced quality of life, respiratory symptoms, of course, a lot of health service utilization. So it's a big problem. We focused our energy on that disease for this competition.

Tarah Schwartz: 13:10

And just before we move on to point two, which was the treatments. Can you just define for us so that we understand as you're taking us through this story, what is COPD?

Dr. Ben Smith: 13:19

COPD, is a chronic lung disease that usually manifests later in life. It's associated with symptoms like breathlessness, cough, sputum production, and it can flare up from time to time where those symptoms get worse. In those moments, patients can feel quite unwell, they can present to the hospital, they can require hospitalization. That's sort of the gist of the disease and it tends to be a chronic problem. In some people, it's there giving them symptoms, but relatively stable. In others that can progress year by year, which can be quite devastating. And currently, we have some treatments that can improve symptoms, but we don't really have a game-changer treatment that can they can cure the disease, unfortunately.

Tarah Schwartz: 14:15

Okay, so that was your point number two, like how is it currently being treated, right?

Dr. Ben Smith: 14:21

Yeah, we wanted to take that problem of COPD, and see if we could bring the latest scientific techniques and the latest understanding about the disease to see if we could try to make a leap forward in treating it, if you will.

Tarah Schwartz: 14:44

And so what did you propose in for this award?

Dr. Ben Smith: 14:48

In the past few years, as many people know, there's been some major advances in a class of treatments called RNA therapeutics. I think most people are familiar with this in the context of the pandemic and the RNA vaccines, which have been quite effective. So we were thinking about ways that we could explore that technology in the context of COPD. This is where I might get a bit technical. But I'll just try to describe briefly what our current understanding is of COPD and what's going wrong in the lungs. And then I'll try to explain how we think the RNA treatments might be helpful if that's okay with you?

Tarah Schwartz: 15:38

All right, give it a try. Try to keep it as simple as possible, so myself included, I want to stay with you.

Dr. Ben Smith: 15:47

We all have lungs, obviously. Our lungs are made up of cells and those cells that make up our lungs, they need to divide and maintain themselves over our lifespan. So the cells that we have in our lungs right now, are not the ones that we were born with. The cells have continued to divide, to regenerate and maintain the lungs. The current understanding for COPD, is that those cells that helped to maintain the lung have become exhausted, if you will. They're not able to divide and regenerate and maintain the lungs like the cells that come from healthy lungs. Does that make sense to some degree?

Tarah Schwartz: 16:40

Yeah, that makes sense. Yeah, absolutely.

Dr. Ben Smith: 16:43

I actually like the term exhausted. So the progenitor cells of the lung in people with COPD, appear to be exhausted. They have trouble maintaining the lung and that is what leads to the recurrent symptoms and infections that these patients suffer from. What this ambitious study proposes to do is to understand what are the specific genes that are turned-on or turned-off in the exhausted cells in comparison to healthy lung cells. Once we identify those specific switches or genes that are turned-on or turned-off, we're then going to try to deliver RNA via an aerosol. So an aerosol is like a mist and there's some recent advances where we can package RNA into the mist, and deliver it to the airways, which is right where the problem is in patients with this disease. Our goal, this is all sort of an ambitious goal, but our goal is to try to reprogram these exhausted lung cells into a more youthful kind of lung cell, such that it can continue to maintain the lung as it normally would.

Tarah Schwartz: 18:20

Okay, very interesting. And I know that you are at the very beginning of this study. How long do you think it will be before you start to see results that you can actually call concrete?

Dr. Ben Smith: 18:32

Yeah, these are early days. The way that these projects or big picture ideas start is we start by obtaining human lung cells and looking to see what the differences are between the exhausted and healthy cells. These steps actually occur in the lab; in what we call a culture dish. Then we'll deliver the aerosols or that medication, that's a mist and that contains the RNA. We'll deliver that; also in the laboratory, in a culture. So we obviously want to make sure that this is effective and safe in the lab, before we ever consider moving it into the living humans. So like I said, these are early days.

Tarah Schwartz: 19:28

These are early days. Well, I think it sounds like a wonderfully ambitious project. I am excited for you. Congratulations on winning the Trottier Webster award. And once you have something come back and talk to us about it because I love the idea of just going for something really ambitious and seeing if you can change people's lives. Congratulations, Dr. Ben Smith, and thanks for joining us on the show.

Dr. Ben Smith: 19:49

Thanks so much. Have a good day.

Tarah Schwartz: 19:52

You too. Next up on Health Matters, a researcher shares how she is helping patients with a life-changing lung condition breathe easier. I'm Tarah Schwartz and this is Health Matters. As you heard in our previous segment with Dr. Ben Smith, there are numerous lung conditions that can have a devastating impact on the lives of the patients who live with them. The Montreal Chest Institute has a clinic that is devoted to helping those living with a group of diseases known as interstitial lung diseases, or ILD. The goal is to help patients live as comfortably as possible with this chronic and often incurable condition. Dr. Deborah Assayag is respirologist at the Interstitial Lung Disease Clinic of the Montreal Chest Institute, and a senior scientist at the Research Institute of the McGill University Health Center. Thank you so much for being with us. Dr. Assayag.

Dr. Deborah Assayag: 20:41

Thank you for having me.

Tarah Schwartz: 20:43

So you focus on interstitial lung disease, which covers a few different disorders. Can you explain what falls under that category for us?

Dr. Deborah Assayag: 20:52

Absolutely. Interstitial lung diseases are, as you said, a group of diseases that really affect the lung tissue itself. These diseases are characterized by often progressive inflammation and scarring or fibrosis of the lung tissue. And there are many things that can cause those interstitial lung diseases. Things like exposures, occupational exposures, like asbestos. Things like autoimmune diseases where the immune system attacks the body, including the lung; leading to inflammation and scarring of the lung. There are sometimes genetic predispositions that lead someone to be more at risk of these interstitial lung diseases. And then, with age, sometimes fibrosis or scarring develops for reasons that are not fully understood.

Tarah Schwartz: 21:48

And how does it impact the lives of the people who are dealing with these kinds of conditions?

Dr. Deborah Assayag: 21:54

It impacts their lives in many different, really sometimes devastating ways. Patients will have shortness of breath on effort that really limits their daily activities. Sometimes patients have a lot of cough that's very chronic and dry, that is very difficult to control. Eventually, as the disease progresses, patients have to go on oxygen, to be able to continue to do some activities, but they're really limited and restricted. And unfortunately, we know that people who have interstitial lung disease tend to have a shortened survival unfortunately, and die, sometimes five to seven years after the diagnosis is made.

Tarah Schwartz: 22:35

That's difficult. Is there a percentage of the population that suffers from these groupings of disease interstitial lung disease?

Dr. Deborah Assayag: 22:44

It's a fairly rare disease. Thankfully, compared to other things like asthma or COPD, or emphysema. We think about 20 to 40 people per 100,000 persons in the population. So it's fairly rare. But enough to have a busy clinic at the Montreal Chest Institute.

Tarah Schwartz: 23:06

Now you're working on a number of research projects. We are speaking with Dr. Deborah Assayag. She's a respirology just at the Interstitial Lung Disease Clinic, and you're working on research projects to help patients living with ILD. Can you give us a glimpse into what you are looking at?

Dr. Deborah Assayag: 23:23

Yes, for sure. We have many different types of research that we do to help our patients with this interstitial lung disease. One of the things that we do is to gather information on the patients, on their lung function, on their disease. We do it at every visit and we're not doing anything to our patient. We're really trying to gather as much clinical information as we possibly can. And we follow them up over many years and we build what we call registries. And these registries are basically large databases with all this information that we're gathering on our patients. These allow us to really understand the natural history of the disease, to understand things that are risk factors for the development of the disease or for progression of disease. And, with these registry studies, we really can understand interstitial lung disease much better thanks to our patients' contribution.

Tarah Schwartz: 24:24

I'm wondering Dr. Assayag, because it is a rare condition. Is it possible that people have it and just haven't been diagnosed with interstitial lung disease? They just don't know that that's what they're suffering from?

Dr. Deborah Assayag: 24:38

It's definitely possible. Yes, as you say, because it's a rare disease. Sometimes patients who will have early symptoms of the disease, like shortness of breath or cough, will be misdiagnosed. They'll be given a diagnosis that's different and will not necessarily have the investigations to be able to find the interstitial lung disease. Unfortunately, we know from prior studies that there are delays in the diagnosis anywhere between one and three years, from the first moment that the patient starts having symptoms until the day that the diagnosis is made. So there are unfortunately delays that really impact our patients.

Tarah Schwartz: 25:18

Now, you mentioned that part of what you do is making people as comfortable as possible. What goes into that? Talk to us a little bit about that aspect of your work.

Dr. Deborah Assayag: 25:28

So a big part of the work of caring for a person with interstitial lung disease is going to be to focus on quality of life. Quality of life means really trying to alleviate the symptoms of shortness of breath and cough as best as we can. Providing supplemental oxygen when patients lung disease become so severe that it's difficult for them to get enough oxygen to be able to function. We also do things like send our patients to formal exercise programs that we call pulmonary rehabilitation program, where our patients will follow physiotherapists and other health care professionals to help them with improving their exercise and their knowledge of the disease, which then will lead to an improved quality of life. So all of those things we do, as part of our multidisciplinary team to really try to help our patients live as best as they can with this devastating disease.

Tarah Schwartz: 26:25

Dr. Deborah Assayag is a respirology. She works at the Interstitial Lung Disease Clinic at the Montreal Chest Institute. Dr. Assayag, I'm wondering, when you're talking about 20 to 40 people in 100,000, what draws someone like you to trying to advance not just the awareness of this disease, but the care that goes into helping people who are suffering from it? What drew you to this area?

Dr. Deborah Assayag: 26:47

I've always liked a bit of a challenge. They're not easy to diagnose, necessarily. The patients are complex; they have a lot of issues that we have to deal with. But I've always loved that. And I've always loved to be able to develop a relationship with my patients and their family and caregivers. As the disease progresses, we see these patients a lot more frequently, because they need more care. I'm really privileged to be able to accompany the patients throughout the trajectory of their disease, from the diagnosis even all the way to the end of life. And that to me, is really the biggest privilege to be able to be a part of that and for my patients to allow me to participate in their care that way.

Tarah Schwartz: 27:40

Well, that's such a beautiful answer. I'm wondering also Dr. Assayag, being someone who is a scientist involved with research and learning at the Research Institute, but yet someone who also, you know, works on the clinical side and dealing with your patients. How do you marry those two? I guess one complements the other, perhaps?

Dr. Deborah Assayag: 28:00

Oh, for sure. They definitely complement each other. What we know in the clinical setting and what we don't know, as a group, and what are the things that are missing in terms of knowledge for our patients to be able to really help them the best way possible to find diagnosis, to find treatment. So I can see based on my clinical experience with my patients, what are the gaps in our knowledge, and then I think about that a lot in my research and I try in some small way to address some of these gaps in knowledge with the work that I do at the Research Institute.

Tarah Schwartz: 28:41

It's wonderful. I want to thank you so much Dr. Assayag for coming back on the show. I always enjoy listening to you talk and hearing about the work that you're doing to care for these patients. So I want to thank you so much for your time today.

Dr. Deborah Assayag: 28:52

Thank you. It was really my pleasure.

Tarah Schwartz: 28:54

Dr. Deborah Assayag is respirologist at the Interstitial Lung Disease Clinic at the Montreal Chest Institute. Coming up on Health Matters, he was inspired to share his own cancer experience after hearing other patients share their own cancer journeys. I'm Tarah Schwartz, you're listening to Health Matters. A few weeks ago, the MUHC Foundation launched a campaign for World Cancer Day. Our goal was to fundraise to support cutting edge cancer research and personalized cancer care. During the week, we had several patients who share their cancer care journey. Michael Goodman is on the Board of Directors of the MUHC Foundation and he was inspired by the campaign to share his own experience. Michael is also the President of Orange Phoenix Holdings and he joins us now. Hello, Michael.

Michael Goodman: 29:39

Hi, Tarah, how are you?

Tarah Schwartz: 29:41

I'm well, thank you. It was really moving and inspirational to read your story that you put out on LinkedIn. What inspired you? Tell us a little bit more about that inspiration to open up about your own journey.

Michael Goodman: 29:59

I have to thank Edith Bolduc from the foundation for giving me a strong push. And Claire Trottier, a former board member of the MUHC Foundation shared her story. A really, very moving experience of her own. And having gone through my experience with cancer about 13 years ago, I never really shared it publicly. I was very young, maybe a little bit even embarrassed about it in different ways. And so I felt as someone that really should or could lend a voice; that has a following, that has a support network, I thought it was very important to step up and share my story if I could.

Tarah Schwartz: 30:50

And you did, and it was incredibly moving. Can you tell us now? Can you open up a little bit now about the kind of cancer that you had? When you suspected something wrong with your health? Tell us a little bit about your story.

Michael Goodman: 31:03

Unfortunately, there's a family history with melanoma, skin cancer. A very fast, aggressive spreading type cancer that took the life of my late great uncle, Jerry. My grandfather, Herbert Goodman's younger brother, far too young in life. So growing up, sorry I get a little emotional. But growing up as a kid, I always taught to stay out of the sun, always be careful if there's something changing on your body. I was very mindful of that. I had something appear on my shoulder that I picked up in a photograph with my son that was just a newborn at the time. And I had it checked out. I was originally dismissed. It's not always obvious, when you see it, the characteristics of melanoma. Sometimes it's very obvious, but sometimes it's not. I dismissed it. Years went by and thankfully, one day I was in my grandfather's office and was brave enough to tell him about it. I was afraid that he would get mad that I never had it removed. And thankfully, with his intervention, they were able to get to it quickly enough and saved my life.

Tarah Schwartz: 32:11

What was it like to receive that diagnosis when you got it?

Michael Goodman: 32:15

Very scary. I was 27. I was very young, or even younger. I don't know. 26, at the time. I was married, I had my first child. They didn't know at the time from the first biopsy how far it had gone. But from the depth of invasion, they knew that it was in the realm of stage three, and how to operate right away. I was very scared knowing that maybe this was it for me. As a young person, you just never expect something like that. You plan for your future, you plan for your life and all of a sudden, everything flashes before your eyes. So it was at a tough time. But thank goodness, I was very fortunate.

Tarah Schwartz: 33:07

It's incredible to hear you talk like this, Michael, because I have known you for a couple of years now. And like you said, it's not something that you've talked about publicly. Why is that? Why is it that you that you felt that you didn't want to share your story? I understand privacy. Was there something beyond that?

Michael Goodman: 33:23

Yeah. I always thought it would come back. I felt that I never beat it. I always had this feeling inside that- I don't know- my story was a tragic one. That my life story would be a tragic one. I still think that way sometimes; I try not to. I never wanted to put it out there to say I beat it or it's gone. When you're always afraid that it could come back.

Tarah Schwartz: 33:53

Michael Goodman, as you just heard as a cancer survivor, he's also on the Board of Directors of the MUHC Foundation, he shared his story. I would love to know, Michael, what the reaction was once you posted your story after so long of not telling anybody? What was that reaction like? What were people saying?

Michael Goodman: 34:12

Obviously close friends, people that were with me at that time, would remember. So it's almost like going back in time. And just reflecting on how I've been able to really truly live a life rooted in purpose. It was a gift. It really was a gift that changed my life. So many people don't have that opportunity. I never take that for granted. I never forget it. Probably the biggest reason why I do everything that I do. In the community and in foundation work- for sure without a question- is for that. It is to give back, to elevate others, to live a life with meaning. I guess the reactions around my broader network, that maybe didn't know me 13 years ago, were really shocked but not surprised to see that there's a lot of sense in a young person's life that has been so dedicated to community over the last decade. Maybe all those pieces started to really come together. It's not a natural thing to be such a young person and do the type of work that I've done over the last decade.

Tarah Schwartz: 35:26

And now that you have shared your story, has it changed how you feel about your diagnosis or what you lived through?

Michael Goodman: 35:35

It's good question. It's very fresh. It was just a few days ago, I haven't had much time to reflect on it. But I felt really good. I felt very proud. I was afraid, as a young person at that time, that if that was the end of my story that my life wouldn't have had meaning. That I would have lived almost without having left any real legacy of having had an impact. That was very scary to me. So looking back now and seeing all the work that I've done, I've done it. I can say now that if the universe decided to take me today, I feel very accomplished and I feel very fulfilled in the impact that I've been able to have. I look back and say Okay, Michael job well done. You did it. That doesn't mean I'm going to stop. I'm definitely not; I'm just getting started. But I feel really good about what I've been able to accomplish.

Tarah Schwartz: 36:39

And one of those accomplishments is as a Board member for the MUHC Foundation, you get to learn about all of the incredibly innovative and fascinating research and personalized cancer care treatments that that the MUHC Foundation is fundraising. You are one of the people that helps direct where that money goes. Is that one of the reasons that you're lending your voice to support fundraising in general and particularly for World Cancer Day?

Michael Goodman: 37:03

Absolutely. I believe there's very little that's more important than the work that we're championing today at the MUHC Foundation. It affects literally every in any stage of life. Whether you're in treatment, whether you're in a support program, whether you're part of a clinical trial and able to get access to novel therapeutics. Even as a donor and you're not on the patient-end, you have the opportunity to be inspired, you have the opportunity to contribute to a brighter tomorrow. I mean, fast forward 10-13 years later, they don't treat melanoma today, the way they treated it 13 years ago. The rate of innovation and the brilliance of some of the most amazing researchers from across the globe who now call the MUHC their home. And we have the privilege of being part of that transformation and making unbelievably important contributions to our community.

Tarah Schwartz: 38:03

A beautiful note to end on Michael Goodman. I want to thank you so much for your time today and for your bravery in telling your story because it was really inspirational. Thank you so much.

Michael Goodman: 38:13

Thank you to you, Tarah. thank you for giving me this opportunity and for everything that you do.

Tarah Schwartz: 38:17

I'm Tarah Schwartz, thank you for tuning in. What would you like to hear about on this show? Write to us at health matters at MUHCFoundation.com. You can also follow the Foundation on social media or sign up for our newsletter and you can do all of that on our website at MUHCFoundation.com. I hope you'll join me again next Sunday. Thanks so much for listening to Health Matters and stay healthy.