Episode 54: Balancing Act - Navigating the Reality of Cancer with Michael and his Mom

Patient From Hell (00:00.987)
Hi everyone, this is Samira Daswani, the host of the podcast, The Patient From Hell. I have the utmost pleasure of having two incredible guests with me today, and I am sure that you are gonna love hearing their story and listening to what they have to share with us today. Thank you, Michael and Ashley, for joining me. I know you guys have your own podcast as well, so we're gonna maybe start there. Do you guys wanna talk a bit about what your podcast is called? And...

michael and ashlee (00:30.154)
Well, thank you for having us! Thank you for having us, yes. We're so honored, you're so cool!

Patient From Hell (00:35.929)
That's how I feel about you guys.

michael and ashlee (00:37.686)
Patient from Hell though, okay, we're Michael and Mom Talk Cancer you're like Patient from Hell I love that so much. I guess I just gave it away. What is our podcast called? Our podcast is called Michael and Mom Talk Cancer. He's Michael and I'm mom. So clearly we have, I have been through cancer. I am actually the cancer survivor. My mom is my caregiver. So Michael and mom just, we just became a duo because in the hospital it's funny like

Sometimes the doctors just call the caregiver, which is my mom, they call her mom. Not our doctors because they know her very well. No, they got to know me. But in the beginning, if you don't know, because we're, I was in a children's hospital, so all the time it's like, they're talking to mom, talking to either someone's dad or it was mom. But then we just made a joke and we were like, we're Michael and mom. And then we became Michael and mom talk cancer. And that was how the podcast started.

I've decided even for tax purposes, I should just change it legally to MOM. Too long. I'm like, I think legally I should just do it. It'll be easier.

Patient From Hell (01:43.911)
Michael, how old were you when you when you got diagnosed?

michael and ashlee (01:46.847)
19. I'm 22 now.

michael and ashlee (01:51.55)
Yeah. So I was in a children's hospital, but I could have been an adult, but I'm happy I was on the children's and I'm now I'm at the adult because I both. Yeah. I have both. Yeah, both. But so happy that he was at a children's hospital because, well, I don't know if he wants to get into the story, but it was during COVID. And so at that time we had like heard stories of people that like they're

you know, someone they knew was in the hospital with COVID or other things, and they couldn't have any visitors. No one could be there. And because he was in a children's hospital, they allowed a parent. They even allowed two parents, and he only has one parent. But so they would let me and also my older son, Steven, to come. And like, I didn't leave his side. I was I felt so blessed about that. Yeah. 19 is a weird age. It's like the in-between, you know.

Patient From Hell (02:39.271)
you guys.

Patient From Hell (02:43.999)
Yeah. So you guys have been through this. I know your story and let me maybe talk a little bit about how we met. And then I would love for you guys to tell your full story. So we met because we both were well, all three of us were speaking at CancerCon this summer, August, right? August, August. And I had the utmost pleasure of seeing

michael and ashlee (03:01.648)
Yes.

Yeah, it was August.

Patient From Hell (03:10.095)
Michael and mom perform on stage. And I say perform because they were sharing that story, but it is so inspirational the way you guys deliver the story. So I absolutely loved it. And I think that was when we had the genesis of having you guys on our podcast.

michael and ashlee (03:22.83)
Thank you.

michael and ashlee (03:27.859)
We felt the same about you because you were on just before, so we were like, wow, she's amazing. The way you did the interview was just amazing. So it's very reciprocal. The admiration is definitely reciprocal. 100%. Yeah.

Patient From Hell (03:34.267)
Thank you.

Patient From Hell (03:42.323)
So with that, do you guys want to share your story?

michael and ashlee (03:44.754)
Yeah, yeah, so. When I was age before beauty, I don't know. Beauty before age. Whatever you want. You're the beautiful. Go beauty. So when I was 19 years old, well, actually, I can't actually start when I was 18. Cause during the COVID lockdown, we were home from college. It was March of 2020. I was 18 years old and my birthday was in May.

So during the middle of the lockdown, I turned 19. And during that time, I had been really, really tired. For a few months, I was just tired, wasn't feeling like myself. I obviously thought it was because of COVID lockdown happening, that like we were just stuck at home, not in school, not doing the usual stuff, the activities I was doing. Cause I was a surfer, I was a windsurfer. I was actually on the Olympic development team for windsurfing. And I done a lot of physical stuff before. I was very active, always in the gym. And...

During that time I was starting to lose a little bit of weight. I wasn't feeling as well because I would do like home workouts and stuff. I wasn't feeling as well in the home workouts and I started to get some night sweats and then eventually fever. So that's what led me to go to the doctor and I did some blood work. And then she recommended me to a specialist. The specialist did some blood work of his own at the Children's Hospital, Nicholas Children's Hospital. And the next day he did a bone marrow biopsy and then I found out I had leukemia/lymphoma and then three weeks later,

he diagnosed me with hypotosplenic T cell lymphoma. So it was a shock. I mean, I lost my father to cancer four years before I was diagnosed. So hearing lymphoma again was like crazy to hear that. Just did not think I was gonna get lymphoma, especially when I was 19, my father passed away, late 50s. Yeah, 60. 60, so it was just like, I was like, no way, like I'm 19, like I have still so much to do. And

The doctor told me I had to go through two to six rounds of chemotherapy and then a bone marrow transplant. I went through three rounds of chemotherapy, you know, immediately lost my hair. I was, but the good thing was I had this amazing support system and I still do. Including my mom, all my friends, and I was really physical doing treatment. I tried to work out on the days that I could. And then after my, I had a bone marrow transplant and that was like physically the hardest thing. Cause I had, you know, 12 sessions of

michael and ashlee (06:12.534)
radiation. I had total body radiation blasts to my lungs and we spent six weeks in the hospital for my BMT and that was like the hardest thing because I was just out for those six weeks like in the bed vomiting, popped blood vessels in my eyes. My left eye basically couldn't see anything because I had popped blood vessels. It was just I was hallucinating. I almost passed away from Grafen syndrome. I had so much swelling in my heart and lungs like it was crazy. I was seeing people that weren't even in the room. Those six weeks were extremely difficult and then

After that, I thought I was going to be okay because I had the bone marrow transplant, I had the chemo, and that's all they told me there was for my treatment plan. So I figured I was going to go home, slowly start going to the hospital less and get back to my life. But I developed graft-versus-host disease. Basically the donor stem cells from my bone marrow transplant just started attacking my major organs and ended up becoming chronic. And the last two years after my transplant leading up to now, I spent so much time in the hospital.

Like we were there for five months at one point because I was so sick with chronic and now I have chronic GVHD and I'm still in treatment. So it's been a crazy long, you know, journey that I'm still in. I treatment next week. I do treatment twice a week. Every other week I want to combo immunosuppressants and just a treatment that calms down my immune system by weakening my blood. So it's been a crazy journey and we just do our best to advocate now. And

Like we always say, love is what got us through everything. That was our speech at CancerCon, love. And we're just huge, huge believers in that when you have the right support system, you can get through almost anything.

Before I talk, have anything you want to say there, Samira? I went off, but I just had to share. I know. It was a simplified version. I didn't want to interrupt you. It was actually a simplified version because there's so much more. I don't want to take up too much time. Exactly.

Patient From Hell (08:13.031)
The reason you see me smiling is we've been doing this podcast for almost two years now. And we've had a lot of people come to our podcast and we've actually had a mom and a son duo recently. And the reason you saw me smile is because I think what you said at the very end is what I was smiling about. Your synopsis of the last two years was so factual.

michael and ashlee (08:28.982)
Wow. Nice.

Patient From Hell (08:43.168)
It was just like, this happened, that happened, that happened, that happened. This is just, it happened. You kind of, there's acceptance to it, right?

michael and ashlee (08:47.831)
Yeah.

Yeah, there's oh gosh. Well, that's been our theme actually since day one was the acceptance and that you know, it's not what happens, it's how you react. Of course, everyone has heard that but it's different to hear it and to try to embody it It's totally two different things. It is two different things, but that really was like that really has been one of our themes from the actual get-go like I literally remember when Michael that day it happened very fast as he said like he was tired for a while, but

tired. Like, tell me if you know someone that's not tired. Like, come on, everyone is tired. And COVID, and it was so dumb, you know, and- But I wasn't tired. It was like, exhaustion. Okay, okay, okay. But I actually thought it was because he wasn't surfing and sailing, doing the things he loves because, you know, that's when we tend to like feel down is when we can't do the things we love. And the beaches were closed. It was, it was a really hard time. But when he got the series of night sweats, that's when everything started happening really fast. We saw the doctor. It was three days later. She was like-

Patient From Hell (09:22.874)
Yeah.

michael and ashlee (09:47.67)
there's a specialist I want you to see. The same day he was like, come today. The next morning was the bone marrow biopsy. And after, like directly, as soon as the biopsy ended, he walked in the room and told us Michael had a blood cancer. He wasn't sure which one. So this, the really, the culmination happened in like four days, like really, really fast. And...

The thing I remember is when I called his brother, so Michael is a middle kid, he has an older brother, Steven, and a younger sister, Jennifer, but they're very close in age. They're a year and a half apart, Steven and Michael, and then two and a half years with my younger daughter, Jennifer. My daughter was actually at a dance class when he was diagnosed, but my son Steven was at the gym, so I called Steven. And he literally came directly to the hospital.

But I remember the first thing that we talked about was like, Michael didn't say, why me? And it actually, you know, the entire time, even to this day, I think, not saying he doesn't have his moments, like why me, this sucks, but the majority of the time has not been like, why me? It's been, it happened, so what do we do and how do we react? And that's, I think that's a huge part of it. And it's true, we have had each other and that's helped

Patient From Hell (11:07.831)
I want you guys to talk a bit more about that actually, because I actually very much relate for what it's worth. I remember because I got diagnosed, I was 30. My mom flew in from India. So slightly different age. I did not have the privilege of being at a children's hospital, although I get it. We worked with children hospitals before and they are a very, very special place within the healthcare ecosystem, right? I think they have a different philosophy, a different...

michael and ashlee (11:22.879)
Yeah.

michael and ashlee (11:32.151)
Yes.

Patient From Hell (11:37.287)
mindset. And I do think that is, if you could pick, you know, I agreed. I mean, I do not have the hospital at all. But yes, if you're in the hospital,

michael and ashlee (11:44.318)
Everyone should be at a children's hospital.

michael and ashlee (11:50.866)
Yeah, that's what I think that's what it's such a different experience than my husband, but that's also another story, but such a different experience than what we went through with him. But I'll let you keep going.

Patient From Hell (12:01.959)
That was actually going to be my question, is why you just went with it, right? Because I think in the story that I know you guys have gone through, you've gone through it now twice. And if you're comfortable with it, I'd love for you to talk about the first time and how that you may have prepared or not prepared you for the second time as well.

michael and ashlee (12:23.43)
It was, it's been so different. Patrice, my husband, when he was diagnosed, it was also a surprise. Of course, he was having back pain. For him, it was he was having back pain. He saw a chiropractor and he was like, man, that chiropractor messed me up. It's even worse. Ended up going in, did an MRI and called me. And he was like, he said, it's gonna take a week for the results, but immediately called me from the hospital saying, they told me I have cancer. And I was like,

Patient From Hell (12:30.364)
Thank you.

michael and ashlee (12:53.418)
"What?" The difference is, I'm going to give you a story. Can I give you a story that I don't ever share? I haven't really shared this story. And this is not personally against this doctor. But for example, because of where his cancer was, it was a lymphoma, but it was found in the base of his spine. And so he was going right away, they said, we're going to start chemo with you, but we want to put an Omaya and Omaya is actually a port in your in your head.

So the chemo would go through his spinal column just to make sure because of the tumor being so close to his spine, they wanted to make sure. And I remember, so he had been diagnosed the day before. The next day, a brain surgeon came in and started telling us all of the risks of putting in the Omaya. And so I remember saying to him, wait, is it necessary? And he looked at me and he was like, forget it. I'm taking him off the schedule and he walked out of the room.

Patient From Hell (13:52.711)
What?

michael and ashlee (13:53.182)
Yeah, maybe he was having a bad day, but he was like, don't question me. And I didn't, I remember so clearly, Patrice and I look at each other and I started sobbing and I'm like, oh my God, I'm so sorry. I think I just, oh my God. And I remember calling the oncologist like, I hope I didn't mess it up. I just wanted to understand if it was actually necessary. But if it's necessary, please, I don't want to have made this doctor angry. But I'm not going to say that's been our whole experience with adult doctors

because we've actually, Michael, as he said, is treated now at two different hospitals, pediatric and adult, and we're having a great experience at his adult hospital, amazing. But it was with my husband, also because he was more outpatient with most of his chemo's, we never got to know anyone, I never knew a nurse. They, you know, it was just so different, and with Michael, we've known everyone by first name, and I think it did prepare us, you know. We've had...

that experience and I think we also went into it and you know maybe it was us too like okay we're just going to take this on and I remember Patrice and I were just going to take this on and we're going to keep the story you know just in our family and private and get through it and with Michael right away we were just like open and vulnerable and maybe that was a lesson we learned and maybe that being more open and vulnerable maybe that let people in as well so you know of course you always learn from

mistakes. I don't want to say we made mistakes with Patrice. It was what it was, but we did learn a lot. And gosh, adult hospitals and those walls. And it was so amazing to be in a place with colors. Even though it was COVID, there weren't like parties happening and it wasn't the same social aspect that I think happens a lot of times in children's hospitals, but it was still, there was just like this feeling of love. And I do think also, I don't want to speak for Michael. I'm sure he's going to want to say something.

But having been through it, we were like, okay, we didn't get through it this time. We're doing it for your dad. We're doing it for Patrice. He is watching over us. And I don't know, that was, we always felt like there was that energy there as well. Yeah, no, I totally agree with that. Yeah. And with Patrice, you know, the difference was also, I had three young kids. When he was diagnosed, they were 10, 12, and 14. And I had to work

michael and ashlee (16:13.646)
to pay the bills because he couldn't work and I was taking care of the kids. So I was very much like, taking care of him for me felt like making his life easier. And with Michael, when he was diagnosed, I was just like, oh my God, you know, you go into mom mode, I was like, I don't care how the bills are gonna get paid, but I just, I'm stopping everything. And our family unit was just me and my other two kids. We would be with Michael as much as we could. I was with them.

I was with him all the time, they would be at the hospital as much as they could. So in that way, it was a little different because I think with Patrice, and again, don't want to say mistakes, but I felt like I wanted to ease his burden, with Michael, I was like, we're just all together. We're just always all together as much as we could. But that was also the gift of a children's hospital. We could really be together.

Patient From Hell (17:05.467)
This was not in the questions I sent you, but if you're willing, can you talk a bit about how you manage work, paying the bills and everything that's happened in the last three years, because you don't have Patrice in your life. You don't have a lawyer. Imagine that.

michael and ashlee (17:25.282)
Honestly, Medicare, Medicaid, grants that we've applied for. I've had some help with my family has helped us out. We have had to resort to a GoFundMe and yeah, I haven't bought anything for myself in a long time, but we're okay. You know, we've managed to do it, but now I work a little bit from home

which has helped, but there was a long time that I didn't. And I'm fortunate, I had a very close friend that set up a GoFundMe that helped me a lot, especially in that first year that I couldn't do anything else. And you know, it's not just, it's not just the paying the bills and not having the petries. Like I've seen parents that are divorced still come together when the child gets sick. And I'm like, it's not divorced, he's gone. And it is a challenge.

There's a lot of times and I'm just like, I wanna talk to him. And then I'm like, and I question myself sometimes because Michael is very wise and very smart. He knows all of his treatments. He knows his medications. He's not sitting back and going along with the ride. He's been very involved. However, there were times when he was in the bone marrow transplant when he was out of it. And those five months when he was in the hospital.

He was near to death a lot of that time. And so I was the person making the decisions, of course. And so in those moments, sometimes I'm like, oh my God, I wish I had someone else. I hope I'm making the right decisions. There was a moment I was advocating to get him off a drug because I felt like it was just harming him more than helping him. And I was like, am I doing the right thing? So I was by myself making that decision for my kid. And that has definitely been a challenge too.

But thank God, he's so smart. He's 22, but he's like 100. He's so smart. And from the beginning, he's been very involved. So it's been amazing.

Patient From Hell (19:29.312)
Can I maybe actually go to where you were going right now and ask Michael you a couple questions if you're okay with it. So there are two threads I wanted to pull with you. One is in the AYA community, and I think it varies quite a bit based on how old someone is when they get diagnosed, right? But AYA for our audience, it's adolescent and young adults. Michael and I technically both fall into the same kind of umbrella, right?

michael and ashlee (19:34.987)
Yeah, of course.

Patient From Hell (19:57.019)
Very different types of cancers, very different life stages, but we sort of clubbed under this broad umbrella of AYA. So the theme I want to unpack with you, Michael, is for you, athleticism and the identity of being a athlete was core to your life, right? And I know we spoke about it briefly when we met in person. I know that shifted. And if you are-

michael and ashlee (20:23.861)
Yeah, a lot.

Patient From Hell (20:24.975)
Yeah, if you're okay with it, I'd love for you to talk about it because I think that is true for a lot of the community, especially the AYA community, right? Because sports and athletics is such a big part of growing up, exploring your potential, exploring the physical body, exploring your kind of endurance. And if you're okay with it, I'd love for you to talk a bit about that.

michael and ashlee (20:47.934)
Yeah, when I was diagnosed with cancer, I was immediately like I had this physique that I had been building for over a year in the gym. Like I was so proud of how I had gained like 20 pounds in a year, stayed the same body fat. He was always an athlete, but in his first year of college. Yeah, I really started to lift weights a lot and get great physique and I was really happy. And I got cancer and then I was like, okay, it's okay. I'm going to be back in like a few months, like maybe six months working out like I was before.

I have chemo and then a bone marrow transplant. It's going to happen pretty fast. So I thought it was going to be good after. And that was my goal. My goal was just like, I'm going to get back my physique. I'm going to be able to say I went through cancer and got this physique back. And then it didn't happen like that. I was working out after my transplant, but I was on so many steroids that caused necrosis that caused me

to not be able to work out like I used to. I mean, I just worked out now for like an hour, but it was like completely different than what I used to do. And you have to, and I had to modify everything now because I can't do dead lifts. I can't do squats. I can't jump. I can't run. I can't lift heavy weights. So I do light weights. I do like a stationary bike. I do certain leg exercises and losing like the athlete side is really hard because some days I just don't know how to cope. And it's hard to not, cause I used to cope. Like I would go outside and

go for a, go skating if I was like mad at something like, and I can't skate or go on like a, not a run, but like something like that, you know? And I just can't do that anymore. And it's extremely difficult, but I've found other things. And instead of saying, okay, I'm gonna come back and be an athlete, I'm like, no, people tell me I'm gonna be, I'm gonna come back. And they're like, you're gonna be an athlete again. You're gonna get stronger. You're gonna get muscular again. You're gonna be able to do the things you used to do. I'm like, well, I'm being realistic. I'm not.

And that's okay. I found other things that keep me extremely happy. Like I've been playing electric guitar now and that's been one of my things which I love and I'm just so happy I found music. So I'm like, okay, I feel so happy playing it. It's not the same as windsurfing or surfing but it's just as equal as an amazing feeling I get. And I can do so many other things like advocate, do podcasts, help others, lead support groups. There's always things in life that are gonna make you feel

michael and ashlee (23:06.794)
certain way that other things made you feel and you just have to find those modify it and adapt and I always talk about that, is not playing the victim role when you get something like cancer or chronic illness and a lot of people do and not to like be like make fun of them like fun of them, but like make them feel worse, but you can't be a victim when you have something like a chronic illness. You can't just be like, oh my god what am I gonna do? My life sucks. I'm gonna sit around all day watching TV and beside like you have to get off the couch

Patient From Hell (23:26.012)
Thank you.

michael and ashlee (23:35.922)
do something and figure your stuff out because or else your life is going to be miserable and it's going to be worse for the people around you. Like if not doing it for yourself, do it for those around you because you don't know how long you're going to have this disease for. You don't know if you're going to live but you just have to be able to find that happiness because it's your life and that's it.

And it's true, it sucks. It sucks, yeah. It sucks. We're not saying, oh, yay, cancer, woohoo! I cry about this stuff. I get emotional about this. I hate it sometimes, but you can't just, you can't do this. You can't stay there. You cannot. I remember saying that we have a, now we kind of talk about bouncing forward and bouncing back. Maybe we're going to get to that later. But in the beginning, I would always say it's our cha-cha. It's like, you know, we go forward and then there's a day that you're like,

bam back and sometimes not even just back like on your butt. But then you just get up. Okay. Yeah. The music starts and you're just like, okay, I'm going to keep my cha-cha going. And. You know, it is definitely like, I know at CancerCon there was a whole session talking about toxic positivity. And I do not believe that we are toxically positive. We have positivity. We do fun things. We do laugh. We do have fun.

We do make up raps in the hospital, like, but there's also moments where like, oh my God, yeah, this totally sucks. And you have every right to cry and every right to complain, but then get it out and then move forward. Because mental health is huge, as you know, which is probably why you started the podcast, which is why we started the podcast. We started the podcast, you know, for ourselves, to talk, to share, to help yourself. And oftentimes the best way to help yourself is to help others.

And that's just also been one of our themes.

Patient From Hell (25:27.215)
I love that you touched on toxic positivity. I think that's where it's so funny. It's because of the work, I'm sure you guys have some experiences, right? Where once you're in the community, you meet others in the community.

michael and ashlee (25:39.978)
Yes, we live with others in the community, like, that's our, those are our people. Yeah.

Patient From Hell (25:45.947)
And it's so funny because I think people have very different approaches to it, right? I think the three of us definitely share it. We definitely share this, right? Which is very realistic, very somewhat data driven, right? This is just the reality of the situation and this is the reality of the life we have and there are good days and there are bad days and you deal and you get through it and you maintain a positive outlook, but you're realistic about the positive outlook.

michael and ashlee (26:02.135)
Yeah.

Patient From Hell (26:15.119)
I've heard you say it so many times, Michael, today. I think we share that. And then I've met people where, and it works. That's the amazing part. It works, complete denial, but it works. It works for them. And it always surprises me, because it's just not how I function. I'm just like, oh, yeah.

michael and ashlee (26:32.79)
No, it's true, it's like, it reminds me of that thing where if you smile, like, it actually makes you happy, and it's kind of like that, the toxic positivity. But it is, that is true. And that's not toxic positivity. It's not a good example. Hold on, that is not a good example because at least my, I smile like a lot, a lot, a lot, a lot, a lot. I know you have smile lines inside of eyes. That's why I have so many wrinkles, I keep saying, that's why I'm so wrinkly, it's because I smile. Well, it's better to be wrinkly and happy. Better to be wrinkly and happy. No, but...

Patient From Hell (26:40.507)
Mm-hmm

Patient From Hell (26:57.427)
Thank you.

michael and ashlee (27:02.998)
But that was a bad example. But it is true when you know that thing that when you smile your brain thinks you're happy. I'm sure you know that, because you're a very smart girl. But you know what it is for us? It's like we do talk about love and you heard us talk a lot about love. And we do believe love has been like huge. It's our four letter word. It's been huge, but we also know it's not

Patient From Hell (27:11.221)
Yep.

michael and ashlee (27:32.294)
a cure, you know, and so sometimes I feel like the toxic positive positivity is sometimes from the outside, you know, when people are like, just stay strong and you're like, okay, I think it usually comes from the outside because people send you these messages and I've had a lot of these personally, people say, you know what, I had this cancer and now I'm like back to do

everything even better than before so you're gonna be fine. Like, other people tell me like, you're gonna be fine dude, I've been through cancer, you're gonna be back to yourself and I'm like, it's not always the same so I don't think you can ever speak to anyone else's journey. I'm going a little off topic but yeah. I know.

Patient From Hell (28:13.859)
I'm actually super glad you just went there. I'm actually very, very happy you just went there. Because I think what you're describing, Michael, has happened to me, God, how many times. And it's, there is something about the biology here that I'm, sorry guys, I'm annoyed. Uh, there's, exactly, right? Especially when you get, especially in guessing, Michael, when you got diagnosed so young and you've gone through it once before, like you kind of have to be, right? You have to look for the requirements and you have to be.

michael and ashlee (28:22.664)
Yeah, yeah.

michael and ashlee (28:29.366)
who I think we are to a little bit.

michael and ashlee (28:38.731)
Yeah, you have to understand.

Patient From Hell (28:41.847)
When I'm hearing your story, Ashlee about you trying to get him off a specific drug, I'm imagining that there were hours spent trying to understand and get the care if it exists, talk to people who've been on it or not been on it. I'm assuming that there was a lot that led up to that moment of you being able to advocate for a certain outcome, right? So...

michael and ashlee (28:51.595)
Yeah.

michael and ashlee (29:02.782)
100%.

Patient From Hell (29:04.807)
So the story I did want to share is I think it happens even within biological cancers, right? Like if I found someone and this actually happened, and I think back to this so often because I was someone I met at a support group, same age as me, same type of cancer as me, different side of the body, same treatment, completely different outcomes. And that's just the reality of the medication we're on, right?

michael and ashlee (29:28.158)
Yeah.

Patient From Hell (29:34.763)
when I talk.

michael and ashlee (29:35.022)
It's the reality of the human body. We always say it's an art. Of course it's a science, but medicine is an art too. There's so many things that go into it.

Patient From Hell (29:46.195)
Exactly. So when people compare stories, I personally struggle with that, because I'm like... Sorry.

michael and ashlee (29:53.074)
It's horrible, yeah. So hard. Yeah, yeah, yeah. It's true and it's a big thing with social media because there is, there are some people I know that had bone marrow transplants and because I had a bone marrow transplant, they, like, I would see them and I would even get jealous myself because I'm like, they're working out and they look so good and they're back to doing this and this and they're fine with this.

But then you just can't like comparison is a thief of joy. It's true because there's people who didn't even live. So I know I have to just take what you have. That's just adapt to it. Do your best. That's literally what I'm going to say. You know, I mean, you can't you can't control it. So yeah, Michael's first diagnosis of autosplenic cell lymphoma, like there's less than 200 documented cases. We do know a handful of people now that have survived. But a lot of people, most of them have not survived. So then we have to go. OK.

It's hard. And also, the other thing is, you know, I have to be careful, too. And I tell myself and I tell other caregivers this because you don't want I don't want to say to Michael, well, it sucks, but at least, because that's not fair either. You know, that's not fair either. It's true. You know, fine line. It is what you can say. That's not because, you know, at least you're alive, but you're alive with all this trauma and all these health issues. So it's still hard. It's still hard.

You have to be like, it sucks. I'm so glad you're not dead. Grateful that you're alive. You can be grateful that you're alive, but also mad about the side effects. Yeah, you can be two things at the same time. Yeah.

Patient From Hell (31:32.399)
I want you guys to talk about that, right? Because if I'm not mistaken, I think I'm not a provider, period. But I think a psychotherapist or someone would call it emotional flexibility, right? The idea that you can hold to contradicting emotions.

michael and ashlee (31:47.846)
Oh, my emotions are extremely flexible. They're always, they're all over the place. His body is not that flexible, but the emotions, however, are so flexible. There's something. They're still alive. I think he got that from me, right? That flexibility. I'll take credit. Maybe.

Patient From Hell (32:07.763)
I'm going to go a little bit morbid, you guys. Okay. But I think you guys, I'm going to go a bit morbid. If it's too morbid, pull me back. We don't go there. So the morbid is, this is where it's a lot of learning for me, right? Because I have a type of cancer where there is a lot of data. There is not data for younger women that is at the same level as older women, but there is data, right? So I've had a lot of comfort and then, you know,

michael and ashlee (32:31.735)
Right.

Patient From Hell (32:35.791)
I tip over the edge and it's too much and you know, I'm trying to find certainty where certainty doesn't exist, but I resort to looking at data because it gives me some semblance of like, okay, all right, control, certainty, life, may or may not be there, but I pretend it's there. But in your situation, I'm assuming that, and I've heard you say at least once in this episode that there is not data. And the data that does exist is

michael and ashlee (32:51.094)
Right.

Patient From Hell (33:05.855)
not great, and it doesn't show a good outlook on life. And you've also gone through it once before. So if you're okay with it, I would love for you to talk a little bit about quantity versus quality, right? Quantity of life versus quality of life. That's essentially what we're talking about. If you guys are okay.

michael and ashlee (33:26.674)
Yeah, yeah, definitely quality of life is really important for us. You know, it's like I always say, you know, you can get diagnosed with a cancer. I have chronic diseases like I have all the complications I live with and live a somewhat long life and then someone completely healthy can go outside and just get hit by a bus. You know, it's like you don't ever really know like and that's the thing and

Like I know I probably won't live like a super long life. But actually, you know what? Who actually knows? Because you don't know technology. So it's, I don't know. But I like to, I think like deep down that I don't, I'm not going to live till I'm like 80. Being realistic is what I think. So I'm just like, I'm just living now. I'm in the moment. I'm not trying to worry about that. You usually say 30. So I'm happy he said 80. I think he's trying to be not that morbid with you. He's like, he said to me, I want to make it to 30. I kind of want to make it to 30. And I was like,

Good goal. I mean, I want to make it to 80, but I, you know, realistically, I'm like, okay, let me just make it to 30 and then we can talk about the next steps. But wait, am I interrupting? Can I say something? Say whatever you want. What Michael said though, that, you know, you as well, Samira like you've been through this very difficult, everything you've gone through and there is the data and there are so, what I want to say is cancer puts

the mortality in front of you. Yes, I can walk out the door and I can get hit by a car and I can die today, of course, but there is still a huge enormous difference in living with cancer or living with a chronic illness afterwards because your mortality is constantly in front of you. It's reminded twice a week when he gets labs.

It's reminded every time there's a scan. It's reminded every time we go to a doctor for a follow-up now for secondary cancers because we all know the treatments that you have been through. So of course I can think to myself, yes, I'm learning my lessons from Michael, I'm learning my lessons from my husband, and I try to embody that, that I learned those lessons of perspective and living life, but at the same time, I think it is different when you're going through cancer because it is right there that

michael and ashlee (35:52.546)
death. I'm sorry. And 19 year old, you, even if your dad died, you don't think I'm gonna die. And even if someone you know's gets hit by a car, you still don't think I'm gonna die. You think that sucks and they're unlucky. When you have cancer, you're living with a constant reminder. Every single day, he's got his port. Like there's just a million things that are reminders of that cancer. So, yes.

than for today. Of course, yes, gratitude, perspective, but you're constantly being reminded, you know, so and in a way that is kind of an advantage because it really does remind you. I think it reminds us like on a daily basis, you know, he's taking medications and pills and so on a daily basis we are thinking about what he's living with.

And that is a kind of gift in like a weird dark way. Right.

Patient From Hell (36:52.915)
I very much relate. So I started a practice, I was still in treatment. It's 2021, where I found, you know, your annual calendar, and I found this beautiful calendar and had like the national parks, it's actually right above my desk, right here. On the back of it, I wrote down, I started,

michael and ashlee (36:57.58)
Yeah.

michael and ashlee (37:14.236)
Aww.

Patient From Hell (37:19.623)
daily practice of like, if I truly, truly only had today, what would I do with my time? Right? And it is, and I've done it now for three years. I have many calendars now and I try and find calendars that are beautiful. So I use it in the night, I flip it, right? So I'm looking at these like gorgeous artwork essentially. It's a way of like reframing it and tracking life in a different way. And it's amazing to me the kind of things that show up.

michael and ashlee (37:27.15)
Yeah.

Patient From Hell (37:49.315)
And it's been true now for three years. I had three years worth of doing this and it's like... It's a cop of thought.

michael and ashlee (37:54.422)
What's there? What's there? Or do we have to wait for the podcast when we interview you? Is it too personal to share?

Patient From Hell (38:00.828)
No, not at all. It's usually small things, right? It's like a cup of coffee, a good walk with my dog, calling my mom. It's the small things. It's not. It really is not the big things, right? It's not like, oh my God, I achieved this big thing in life. It's...

michael and ashlee (38:03.925)
Yes!

michael and ashlee (38:10.111)
Always.

michael and ashlee (38:18.45)
And that is one of the perspectives of cancer. And that is what happens when I think about Patrice and my husband, what are the things I miss? I don't miss when we went on a trip to Corsica. I mean, it was awesome, but what I miss is coming over the bridge and calling him and saying, I'll be there in 20 minutes or you miss those things I miss at night when he had a way of touching my hair. I miss that.

So it's definitely a reminder of the little things. And there was a moment, and I sort of lost my train of thought, but there was a moment when you were just talking that, okay, when I was fighting for Michael for that medication, and I was just like, let's just go home at one point. And this was Michael. He was like, I just wanna go home and we'll go off the medication and I'll just go in the ocean and, because he couldn't go in the ocean.

And we're like, okay. But then things turned around. And so we did switch it. And he waited to go in the ocean. Because then we saw he was going to live. But that moment when we weren't sure, we were like, let's just blow off everything and just go for a swim. You know?

Patient From Hell (39:32.681)
Yep.

Patient From Hell (39:42.06)
I don't surf, but I scuba dive.

michael and ashlee (39:46.34)
Oh yes! I used to scuba dive with Patrice. Yes.

Patient From Hell (39:49.967)
Such a special place, right? That the ocean is really special. And I can relate to that emotion. I can definitely relate to that emotion.

michael and ashlee (39:52.855)
Yes.

michael and ashlee (40:00.61)
That was so hard. And after the BMT, that was one thing. So this is also what happened with Michael, is he had his bone marrow transplant, and there was like sort of, there was a plan. And I remember the bone marrow transplant doctor being like, you're gonna get your transplant six months later, you're gonna be in the ocean. That did not happen

because he developed so many complications. And so we had this plan. We knew what was gonna happen. Day 100, he was gonna start to ween off the immunosuppressants. We knew that he was gonna go to the hospital. They had told us by day 100, he's gonna start going every other week, and then it'll be once a month, and then it'll be once every three months. He's still going to the hospital every single week, and this is three years later. And now he has been in the ocean, and it depends on treatment when he can go in. I'm gonna go tonight. Yeah.

Oh, cool. So, but it took not six months, it took over two years. And now it's still rare, but we can find windows that we can go in. So, you know, it is that whole adapting and you don't know.

Yeah.

Patient From Hell (41:09.523)
Okay guys, I'm gonna try it. This is a very hard episode to try and wrap up, except I know I can't do this for hours. Ha ha ha.

michael and ashlee (41:14.358)
I know. I know, I'm like, we can see so much more. We've been going for over 35 minutes I think. I haven't even paid attention. Oh my gosh. We can just keep talking. I could talk to you forever. Yeah.

Patient From Hell (41:27.023)
That's how I feel too. And we will do another episode. I know we've agreed to that. So we'll definitely continue the conversation. But for this one, I am wondering if you guys can share

michael and ashlee (41:31.412)
Yes.

Patient From Hell (41:43.591)
one thing for someone else who may be going through the cancer experience right now. But any one thing. It could be, I know, sorry, very dull order, I realize.

michael and ashlee (41:53.986)
That's hard. I'm just... That's hard. I'll just say that... Well, it's not going to be easy. But it is very... It is doable. It is possible. There's a lot of support out there. And you are definitely... You are definitely not alone. You just need to find that support. And it's out there. There are apps, there are social media, there are ways to find other people going through.

something similar to you, so just don't feel alone. I'm going to piggyback onto that because I think that's one of the hard parts is you when you go through it and as a caregiver as well, you tend to want to take everything on and just kind of isolate yourself a little bit, not everyone, but a lot of times it's a very isolating experience. And you know, there's so much research which has nothing to do with cancer, but about longevity and health and happiness, how connection has is the key to those, you know.

Longevity, health, happiness are all, if you have connection, they all improve. So even when you're going through the cancer diagnosis, if you're a caregiver, like try to find that connection, whatever it is, maybe it's a support group, maybe it's not. Maybe it's just one person you can talk to, but if you can find a connection, I truly think that will help. And also when you're in the hospital, make sure you have a cozy blanket because their blankets are horrible.

And that is at the children's hospital and the hospital. It doesn't matter any hospital. They're small sheets. Just like get a blanket. That is my advice to you. Get a blanket and your own food because hospital food is not it. So I can give you lots of practical tips too. And aromatherapy if they'll let you do aromatherapy. Okay. Aromatherapy is awesome too. Beautiful mother, thank you.

Patient From Hell (43:43.675)
I love that. I love how we went super deep and then super practical. Love that. Halfway. Thank you guys. Thank you guys for being on this episode. Thank you for honoring me with your time and for doing what you do for the community because your story makes a huge difference. This is the second time I've got the privilege of listening to it and hearing it. Even the second time around, I had goosebumps.

michael and ashlee (43:43.694)
Yeah.

michael and ashlee (43:48.099)
Yes. Gotta have both.

michael and ashlee (43:57.453)
course.

michael and ashlee (44:11.418)
Oh, you're amazing. We can't wait to talk to you more. We are scheduling more time with you. Yes. Thank you so much. Thank you. We're in the same family.

Patient From Hell (44:16.851)
Yeah we are. This is true.