Episode 72: Lynch syndrome and surviving cancer three times, this is Wenora’s cancer story

The Patient From Hell Podcast (00:00.824)
Hi everyone, this is Samira Daswani, the host of the podcast, The Patient From Hell. I have a very, very cool guest here today. This is Wenora Johnson, who I'm gonna let her introduce herself because, wow, this woman has a bio. Let me tell you that. Thank you for being on this episode.

Wenora Johnson (00:21.995)
Thank you. Thank you for the invitation. I'm so excited to be here. In fact, what's I couldn't think what was more intriguing is that just the name of the podcast itself, Patient from Hell. was like, I can identify with that.

The Patient From Hell Podcast (00:40.212)
Why? Tell us why you can identify with that.

Wenora Johnson (00:43.231)
Well, you know why? Because it's been hell for me with my diagnosis of cancer, not only once, but three times. And then, you know, while I'm cancer free today, making sure that people understand that having cancer three times meant that a deeper dive of understanding why I got that many cancers

and how it's associated with the hereditary side of my family.

The Patient From Hell Podcast (01:17.468)
Wenora, can we maybe start from the third time? So instead of going chronological, let's start with the last time and just tell us what happened.

Wenora Johnson (01:26.647)
Well, if I start really, really from the last time, I'm going to go back a little bit to like 2017 because that was like the last initial cancer that I kind of had. At that point, I was kind of a little bit more aware. I think I'm a little bit suave now because I know more about what Lynch syndrome is and how it's going to affect my life. And so when I found this really tiny pimple on my backside,

I thought, I'm just gonna bust it or get, you know, do some things to it to get rid of it. And that didn't work. And so when it didn't work, I realized that this is a trip to the dermatologist. And after going to the dermatologist, I told her, I said, you know, I have Lynch syndrome and I suspect that this could be something involved, you know, with my Lynch syndrome or genetic mutation that I have.

And she was like, no, you have extremely oily skin. I believe it's more associated with that. And I think you have like a sack of oil cells around this little pimple that's on your backside and I'll just remove it. And I was like, okay. Well, while sitting there in the office, she started to remove it and she wound up removing about two inches of basal cell carcinoma out of my backside. And that's

It was like a real big wake up call for me because, know, number one, I'm thinking about the myth of, you know, as a person of color, like we don't go out of sun, know, we don't get skin cancer, but that's far from the truth. We can get skin cancer. We can be exposed to whether it's environmental or hereditary skin cancers. And that was, that was a wake up call for me. And I think it further pushed me in my

initiative around awareness for cancer of any kind, but not just for me, but for my family members who have a 50 % chance of being Lent Syndrome positive as

The Patient From Hell Podcast (03:39.298)
Can you back up for me a little bit and tell us what Lynch syndrome is?

Wenora Johnson (03:44.939)
Well, this is what I am going to do. I'm going to give you two versions of what Lynch syndrome is. I'm going to give you the CDC version and I'm going to give you my version. So the CDC's definition of Lynch syndrome is that it is a known hereditary non-polyposis colorectal cancer. And it's the most common cause of

The Patient From Hell Podcast (03:58.774)
Alright, done.

Wenora Johnson (04:12.791)
hereditary colorectal cancer. And people with Lynch syndrome are more likely to get cancers and to develop these cancers at a younger age, before the age of 50, like myself. And Lynch syndrome related cancers include colorectal, endometrial, there's stomach, there's pancreatic, there's prostate, there's brain, and then there's skin cancer –

all the cancers that fall within my family who has had a history of cancer and myself. So my grandfather had colorectal cancer. My mom passed away from a glioblastoma. And this is just part of, again, of that hereditary, passed down nature. So for me, it was realizing that it came from my maternal side.

And now my definition is: hell. I know, but the flip side of the coin is that because I'm Lynch syndrome positive, I am under such a strong surveillance plan and visiting my healthcare team at least once a year or sometimes even twice a year. It keeps me alive. And, and you know what? At the end of the day, I have to be grateful for that.

The Patient From Hell Podcast (05:44.568)
So you're three time cancer survivor, yes?

Wenora Johnson (05:48.053)
Three-time cancer survivor.

The Patient From Hell Podcast (05:51.362)
Okay, so skin cancer, what was number one, number two?

Wenora Johnson (05:55.351)
Well, number one in 2011, I was diagnosed with colorectal cancer. And that, that to me probably was the most shocking one because I had no symptoms. I felt probably the healthiest that I'd ever felt in my life because I, you know, I was in the military. I was, I felt fit and strong. I had routine doctor visits and followed up by of course, military visits to the doctor.

I really thought I was a healthy person. And until my doctor asked me to take a fit test, that changed overnight.

The Patient From Hell Podcast (06:35.96)
A FIT test? What's a FIT test?

Wenora Johnson (06:38.231)
A FIT test is actually what they call a fecal swab test where they take your fecal matter and it's tested and sent off to see if there are any like DNA markers or things that could possibly allude to having colorectal cancer. And I think today it would be kind of known as Cologuard. But in 2011, it was just called a FIT test.

The Patient From Hell Podcast (07:00.01)
The Patient From Hell Podcast (07:05.218)
Okay, so that's number one. What was number two?

Wenora Johnson (07:07.479)
And number two, this happened in 2016. So in 2016, I really had some great, great physicians, doctors, oncologists, specialists who were really looking out for me. And I appreciated that. And so my oncologist kind of suspected that I might be Lynch syndrome. And so she asked me to take a genetic test in 2016. I kind of put it off a little bit and she would ask me at every visit.

And then finally I relented and said, you know what? I'll go ahead and do the genetic test. I've got nothing to lose at this point. I'm actually cancer free or so I thought. And why not do that? And so I took the genetic tests. The genetic tests came back, of course, positive for Lynch syndrome and get this because I still have it to this day, still hold on to it. It said that I had a 60% chance of getting endometrial cancer.

And that's when I took the preventive measures in my hand and said, well, you know what, if that's the case, I'm going to do something about it. And so I did a total hysterectomy as a preventive measure. And when they completed the biopsy, guess what was there already? Endometrial cancer. So it was spot on. And so for me, this really, really just let me know that this is my life is being saved because of this genetic knowing this genetic information.

The Patient From Hell Podcast (08:45.666)
I have, I think, three questions for you. Let's maybe go all the way back. You in the military?

Wenora Johnson (08:48.331)
Yeah.

Wenora Johnson (08:53.164)
We could go all the way back.

The Patient From Hell Podcast (08:55.96)
You were in the military? What made you join the military?

Wenora Johnson (08:58.871)
You know what? I was a single mom at the time. I joined the military in 2003 at a very late age. In fact, I was probably twice the age of those recruits who were coming in. And I was like, I'm like, I could be your mom, you know. But for me, it was a little bit more personal than that. There was three things I wanted to pursue. One was to finish my education. I wanted to go back to college.

I wanted to purchase my first home and I wanted to travel the world. And that's what the military did for me. It allowed me to finish my degree. So I got my associate's degree. I've got my bachelor's degree. And I was actually working on my master's degree in public administration when cancer hit. And then of course the travel. And...

The travel landed me in places like Italy and Rome and Germany and, you know, experiences that, you know, I'm just grateful to have had, especially when you're looking at a life changing experience of being diagnosed with cancer.

The Patient From Hell Podcast (10:13.548)
Have you, did you stay in the military after diagnosis number one?

Wenora Johnson (10:17.687)
I actually served eight years and believe it or not, my contract for my eighth year ended in 2011. And so that February is when I was tested and had surgery and was told that I have stage three B colorectal cancer. And I was like, I can't even re-sign up for the military now because that, you know, they wouldn't have allowed me. I would have been not fit for military duty.

And so there went my dream of, how can you say, retiring from the military as a reservist. And that was the start of a new different trajectory that I'm on now.

The Patient From Hell Podcast (11:04.44)
I'm gonna say something probably really stupid, so I apologize. I don't know. I don't know. Not sure about that, but here it goes anyway. I don't think it had ever dawned on me that if you get a cancer diagnosis, you can't serve in the military.

Wenora Johnson (11:07.127)
Nothing's ever stupid. Nothing.

Wenora Johnson (11:26.923)
You cannot serve in the military. Absolutely. Because well think about it, for one. I, the, the branch of service that I served in was the Navy and the Navy, you serve on a ship. If I'm sick or I need chemo treatments and infusion or something, they can't accommodate me with any of that on the ship. And so I got that. I understood that, but I

have to say the most disappointing part out of the entire eight years that I served in the military and going to the doctor on a regular basis and being poked and probed at the military hospitals because you're checked every year for everything and given all these shots and no one caught that I had colorectal cancer. And what's so amazing about that is

in 2011 when I woke up from surgery, my oncologist said that you've had this sitting there for 15 years. So I was 44 at that time, almost 45. That meant that cancer had been sitting a long time and no one caught it.

The Patient From Hell Podcast (12:44.396)
Yeah, I definitely relate. I think my oncologist told me seven years. The cancer had been in me for seven years. Yeah. Interesting. my God. Okay. All right. So you leave the military, you go through treatment. What happens next?

Wenora Johnson (13:02.903)
I think a host of things that kind of probably prepared me for where I am today and this passionate patient advocate that I've become is that as soon as I was done with treatment, because I worked for a government entity and they were doing budget cuts and downsizing, they eliminated my position. So here I am, fresh couple of weeks out of treatment and being told that you now no longer have a job.

And all I could say was, okay, another thing thrown at me. Yeah, this really feels like hell. This does because I'm like, this is just so unfair. I've been diagnosed with cancer, a late stage cancer. I had to drop out of school. I no longer have a job. And all I could think was to try to stay strong for my family so that they wouldn't worry.

The Patient From Hell Podcast (14:06.55)
And this is, you were still a single mom, right?

Wenora Johnson (14:09.433)
Oh yeah, single mom at that time. And you know what? Thankfully my children were older. They were later in their teen years and closer to adulthood. But it doesn't make it any easier because when you don't know, especially when you're diagnosed with a late stage cancer, if you will survive it or not, you not only have to prepare yourself mentally, but then you have to turn around and figure out, how can I prepare them for...

when I'm not here or if I'm not here.

The Patient From Hell Podcast (14:45.458)
I'm going to skip maybe to the end, not end, not end of the podcast. I have a couple of questions here, I'm going to pull them up front.

Wenora Johnson (14:47.392)
You

The Patient From Hell Podcast (14:55.33)
You know, we've had a couple of guests on this podcast who have kids who were younger. They were young moms. And having a conversation with a young child feels so foundationally different than a teenager or an adult. And if you're open to it, I'd love for you to share how you may have done that because I know, I know there are tons of people in our community who struggle with that. That's a very hard conversation.

In the world of hard conversations, that's definitely up there.

Wenora Johnson (15:28.103)
Yeah, it is one of the hardest conversations. And yet, you know, here I am, was fussing that my mom never told me about my grandfather passing away from colorectal cancer and her potential for cancer as well. And so I fussed about that after going through my cancer spill, only to realize that I was doing the very same

I thought I was protecting my children by not sharing information with them that was probably is just as important for their health going forward as they reach adulthood because I wanted to be the mom. Like, don't worry, I've got this. It's going to be okay. And just don't worry, mom's got this. And I think that's where we make our mistakes. And that mistake for me is it was

not sharing with them the true battle of what was going to lie ahead. Because it robbed them of their ability to be more helpful to their mom so that they could have some closure if something were to happen to their mom or to someone that they loved. And I tell you, it's been some light bulb moments on this patient advocacy journey that's helped me understand that.

When people say, I help you, especially your children, you let them and explain to them what cancer is so that they don't have a fear of cancer, a fear of dying or worrying about if they are going to themselves then get cancer and die. So it's so, so important that it comes from us and comes from a place of truth and transparency so that they're just not afraid.

The Patient From Hell Podcast (17:24.088)
Wenora, how did that conversation change? Because in 2011 you're having this conversation, you're educating. 2016 comes around. And 2017 comes around.

And it almost feels like you've had to have that conversation multiple times with multiple flavors and multiple realizations.

Wenora Johnson (17:48.865)
Yeah, yeah, yeah. And it's taking me into this patient advocacy journey that I realized that's why I said that I was robbing them of their ability to understand about this hereditary cancer and to be more open with them. So even if I had something as simple as a doctor's appointment, just breaking it down that, hey guys, I have a doctor's appointment today. It's nothing serious.

It's my usual six month checkup. You're more than welcome to come with me if you like. So inviting them into the process. But it took me some years to get to that point. It really, really did. But I'm glad I'm there so that I can stop the generational, how can I say, family secrets that kill.

The Patient From Hell Podcast (18:48.276)
That's real line. That's quite a ha ha tangent, sorry. One of the audiences I know listens in is in India. And when I got sick, my mom flew from India to the US and took care of me amongst my dad did, my brother did, my mom was the main pillar. And when she's gone back,

she's been talking about cancer in the community back home, right? And it's fundamentally different. Women don't get screened. It's just not a thing. And cancer happens in the quiet corridors and it's hush-hush and it's not spoken about. There is stigma that comes with it and it is very different than the US.

Wenora Johnson (19:42.9)
and it should have this your name.

The Patient From Hell Podcast (19:47.188)
a huge difference between how much. And I'd love for you to talk a bit more about that. Because there's the US generally and there's like smaller communities in the US and I feel like the cancer plays out in different ways and I'm just in fact, so like I mind talking a bit about that. That would be great.

Wenora Johnson (19:58.033)
Thank you.

Wenora Johnson (20:05.215)
Yeah, that is such a great thought there. I, you know, it wasn't even until this year that I realized how much really that we here in the US take for granted our ability to be a patient advocate or do self-advocacy or speak up and ask for a second opinion because a

a lot of other countries just don't do that. And it wasn't until I was contacted on LinkedIn by a news reporter from Switzerland. And she just wanted to do this article about patients and patient advocates and how we navigated our lives, how we spoke up. And after reading her entire article,

I realized just in reality how blessed we are because we have the ability to speak up and to talk about subject matters that are in the essence kind of free from discrimination. So for instance, like I can go to work and freely talk amongst my colleagues about my diagnosis or what I'm going through or

or so without the fear of, this going to get back to HR and I'm going to be fired because of it, or I can't talk about it because it's something that could make me lose my job. And so I just never realized that other countries, especially a country like Switzerland, who I thought was just fairly on top of their game, especially when it comes to healthcare, their patients don't have that same ability.

We were just talking about something as simple as the EHR. And the EHR is your electronic health care record. Something that for me has been my guide these last 13 years of my cancer journey. So what I mean by that is whenever I go in for any kind of test, whether it's for cardio, whether it's for just simple blood work,

Wenora Johnson (22:23.935)
I know before the doctors do because I'm looking in my electronic health care record and go, okay, that test is this and it looks good. It's in the normal range. And then I take it a step further. I look at it and compare it from year to year, the past seven years to see if there's been any change. And here I am, I'm like, I'm trying to diagnose and see if there's cancer coming up or something that I should be aware of. And they don't have that ability. And that's why I say

really don't realize how fortunate we are because other countries are struggling in this area for their patients.

The Patient From Hell Podcast (23:03.672)
Wow, I've been working in healthcare my entire career. I don't think I have ever met someone except you who praises the EHR. I'm not joking. I think in 13 years of working in healthcare in the US, I have never ever heard someone say.

Wenora Johnson (23:22.719)
I do. I love my HR. It's an app on my phone. And you know what? Actually for me, I'm also going to even go a little bit further, say it's almost in a sense more or less therapeutic. And just because when I say therapeutic is when you first of all, when you're taking a test and you're waiting for results, the anxiety of just waiting is painful.

The Patient From Hell Podcast (23:51.18)
Yeah.

Wenora Johnson (23:53.247)
So having the ability to go in and see when those results pop in, and they're usually fairly quick, you know what? It's a relief. It's a relief off of my mind. I can go on to the next big thing in my life. And so that's why I not only talk about the EHR, how important it is, but having a really good healthcare team. Because see, I had a team

of individuals who cared enough about me that they wanted to see me thrive and survive. And because I saw all the effort that they were going through, it pushed me in my efforts to stay as healthy and alive as I could.

The Patient From Hell Podcast (24:42.38)
I love that. Can I go back to communication with family?

Wenora Johnson (24:49.75)
yeah.

The Patient From Hell Podcast (24:51.34)
Because there's something you said that I wanted to unpack because I heard you say this, I think maybe two times, which is you learned how important it was to communicate transparently. And my question for you is, how did you come to terms with your own fear? Because it sounds like you almost had to come to terms at least to some extent with your own fear to bring others along with you.

Wenora Johnson (25:14.743)
Absolutely.

The Patient From Hell Podcast (25:15.958)
And I'm so curious how you did that because if I had cancer thr– I had cancer once and I'm like, whoa, if it comes back, okay, no, no. No, thank you. To go through cancer three times... That's a whole different game.

Wenora Johnson (25:29.719)
Yeah, yeah. Actually, this part here, Samira, is where patient advocacy has been my therapy, my friend. And as I'm aging and I look at retirement, the next couple of three, four, five years, full-time work for me, because that's just how valuable and important it is. You mentioned, how did I get through? What was the driving force?

I think that when I initially even began into patient advocacy work, it was because somebody asks me to share my story. sharing that story proved to be so therapeutic that I then asked the organization, how can I get more involved? What more can I do to, you know, so that, you know, people like me can get this information and feel like I do afterwards.

And so thus began my training as an advocate. And the first thing that I got involved with, believe it or not, was policy. And I'm going, why the heck am I doing? I don't know nothing about policy. I don't understand policy. But what it did help me understand is that policy is important when it comes to saving patients' lives. Because number one, it introduces you to the Capitol Hill,

your congressional members, your senators, and you're telling them your story on why it's important to have and continue to pay for cancer research, to put the dollars there. Because at the end of the day, it means that when a research has been successful and a patient in turn benefits from that successful research, then

Life is good.

The Patient From Hell Podcast (27:31.158)
So maybe let's dive into that a bit because you've been doing this for a long time, right? You've been on.

Wenora Johnson (27:35.982)
Ten years. This year has been my tenth year.

The Patient From Hell Podcast (27:41.261)
Well, I'm super glad. I don't know if I have the courage to go to Capitol Hill myself. So thank you. Thank you for representing the full community. What is the change you're driving to? Like if you had a magic wand, you could change anything in policy. What is it and why?

Wenora Johnson (27:56.983)
Well, you know what? I've had the opportunity to be involved in an initiative or a drive. When I tell you that I got involved with patient advocacy and my first training was policy, it was actually the initiative around patients who needed colonoscopies, having that change from the age of 50 to 45.

And this was started out as a need to catch early onset colorectal cancer patients under the age of 50. And so in May, 2021, the US Preventive Service Task Force issued new recommendations for colorectal cancer, stating that people at average risk should start screening at the age of 45. Because believe me, if I didn't have a really diligent

primary health care provider who decided to ask me to do this fit test at the age of 44 and a half, I wouldn't have made it to 50. I was on my way to stage four colorectal cancer. And so this initiative for getting colonoscopies at an earlier age was all about saving lives. And that to me has been, I guess, one of my proudest moments and moments I keep referring to

and keep talking about when it comes to the importance of cancer research.

The Patient From Hell Podcast (29:24.969)
I think it is safe to say that you have quite literally saved lives. I don't think a lot of people can say that. I think it is very, very, very that– so thank you.

Wenora Johnson (29:38.593)
Thank you for your kind words.

The Patient From Hell Podcast (29:41.42)
I'm not being kind, I'm just being factual.

Wenora Johnson (29:43.767)
But you are, you're listening. And one of the things that I have learned in this journey is that we don't listen to each other enough, or we only half listen. And we miss the whole story behind it. And so that's when I say thank you for listening and allowing me to share. It's truly therapeutic for me.

The Patient From Hell Podcast (30:10.284)
Thank you, Wenora. I don't know if I'm there yet. When people ask me to share my story, I'm not there yet. I don't know if it's there.

Wenora Johnson (30:16.023)
And not everyone will be there. I think that's one of the things I've learned as a patient advocate, because I'm like, I got on this band of, well, everybody wants to do this, right? Everyone wants to share their story and their cancer journey and how they can make life better. But that's far from the truth. Not everyone wants to share that story. Some just want to make it through the day,

let alone try to share their story. And so I get that and I respect that and allow yourself grace for having that feeling. There's nothing wrong with that.

The Patient From Hell Podcast (30:56.204)
You know, we're recording this on a Friday afternoon and I only say that because I feel as if you're giving me all the emotional tokens I need for it to work out.

Wenora Johnson (31:05.687)
Well then my job is been done.

The Patient From Hell Podcast (31:08.088)
So thank you.

The Patient From Hell Podcast (31:12.128)
Not yet. We're gonna go to rapid fire though. So not

The Patient From Hell Podcast (31:17.816)
Okay, so that's actually exactly what we're gonna do next. We're gonna go to rapid fire. 10, 15 minutes, I'm gonna ask you a series of what and how questions. And goal is to keep the answer short, because what we very often do is we clip it and then we communicate, not communicate, we disseminate that to the community via Insta and like, know, all the good stuff that I, we won't go there.

Wenora Johnson (31:26.293)
Okay.

Wenora Johnson (31:38.455)
All the good

The Patient From Hell Podcast (31:46.593)
Given your background, I have a laundry list, so I apologize.

Okay, you ready? What is colorectal cancer?

Wenora Johnson (31:55.745)
I'm ready.

Wenora Johnson (32:01.303)
Well, again, I am going to give you the CDC's quick version. And it is basically a common cause of hereditary colorectal cancer, also identified as hereditary non-polypulmon, bleh, say that 10 times. Okay, restart. Okay, the definition for lynch syndrome

is a hereditary non-polyposis colorectal cancer and it's usually found in patients under the age of 50.

The Patient From Hell Podcast (32:44.558)
Nailed it. What is genetic testing?

Wenora Johnson (32:47.895)
Well, let's see. Genetic testing.

How can I put this and see this is rapid fire. genetic, genetic testing is a procedure that looks for genetic changes in your DNA. And sometimes those changes are called mutations or variants. And, and most of the time we inherit that DNA from our parents, one of our parents.

The Patient From Hell Podcast (33:17.784)
Okay.

If a patient finds out they have a mutation during genetic testing, does that mean they will get cancer?

Wenora Johnson (33:29.089)
Actually it doesn't and the organization that I work with, we actually call these individuals pre-vivors, which means that someone who has a strong hereditary risk of cancer but has not developed cancer.

The Patient From Hell Podcast (33:46.678)
What is patient advocacy?

Wenora Johnson (33:49.279)
Ooh, patient advocacy. It really, it's in a way almost a form of self-advocacy, advocating for health care or things that aren't going right with patients.

Wenora Johnson (34:10.389)
Okay. I was like, okay. Brain went dead. I'm sorry.

The Patient From Hell Podcast (34:15.862)
No, I promise.

Chemo brain, you got that for life.

Wenora Johnson (34:22.231)
Absolutely, thank you. Chemo brain, chemo brain, that's it. But patient advocacy actually is a way also for patients to lend their voice when it comes to treatments and things of that nature.

The Patient From Hell Podcast (34:25.877)
you

The Patient From Hell Podcast (34:41.366)
What is colorectal cancer screening?

Wenora Johnson (34:44.503)
Woo, colorectal cancer screening is actually a screening process where it's either through, now can be blood work, it could be through a colonoscopy, it could be through a fit test where individuals are checked for colorectal cancer. And for some individuals, if it doesn't run in your family or if it's not hereditary, a physician may tell you to come back in 10 years or five years.

And for a person like me, believe it or not, I almost go either every six months or every year

The Patient From Hell Podcast (35:21.72)
For a colonoscopy?

Wenora Johnson (35:23.007)
For a colonoscopy because of my Lynch syndrome status.

The Patient From Hell Podcast (35:32.406)
Okay, I was gonna go down a colonoscopy rabbit hole and that's it.

The Patient From Hell Podcast (35:39.392)
Not the best idea. All right. Sorry.

Wenora Johnson (35:41.143)
And that's because, believe it or not, because of that MSH2 mutation that I have, it means that polyps, they grow faster and they turn into cancer faster than the average person. And the example that I can quickly give you is that last year, I'm going to say it was 2023. Yeah, that's right. It was 2023.

I was due for my yearly colonoscopy and of course, because of COVID things got pushed out. So I had a colonoscopy no more than 14 months. And within 14 months from the last colonoscopy I had the year prior, I had three pre-cancerous polyps, one really huge one that was getting worrisome to the doctors. And so of course, colonoscopies just can remove that.

But again, these are wake-up calls for me to remind me that even a year can make a difference or change in my life, where it would normally take maybe 10 years for a polyp to develop into a huge enough tumor to cause cancer.

The Patient From Hell Podcast (37:01.434)
Okay, what is the best tip you have received from a fellow cancer patient?

Wenora Johnson (37:07.403)
I think the best tip that I've received from a fellow cancer patient is to allow yourself grace, invite your family into your journey so that you can grow together in this process. And the other is, and that I would pass down to others, is develop a great communication style with your healthcare team.

The more that you can communicate to them in a positive manner and let them know about issues and things that you have going on in your life. I think they greatly appreciate that. And one of the things, reasons that I say that is because for many years of going to the doctor, I remember sitting down in that chair and the doctor comes in and the first thing he says, Wenora, how are you doing today? And guess what I say? I'm okay. But in the back of my mind, I should have told him

my leg has been hurting or I've got this unusual swelling and you know, I've had these bad headaches and yet I've blown them off and I've blown an opportunity to have a really truthful communication with my healthcare team. And so that changed for me. I make sure that I let them know about anything that I may think of as nothing.

The Patient From Hell Podcast (38:37.272)
Not going down a rabbit hole. I'm not gonna go down. This is the problem with recording on Friday afternoon.

Wenora Johnson (38:43.766)
Hahaha!

The Patient From Hell Podcast (38:46.552)
Okay, what do you wish you had known before your first cancer diagnosis?

Wenora Johnson (38:51.637)
What I really wished I would have known actually is my hereditary risk factor for cancer. I just honestly did not know. And it wasn't until I woke up from my surgery and being told by my oncologist, I have stage 3B colorectal cancer. And my aunt shared with me that very same day, yeah, your grandfather passed away from colorectal cancer. I'm like, that just would have been so, so, so

important for me. And so again, I think it's so important that we talk to our children and relatives about the importance of, know, if you're going to get that early detection or so, you need to know what's in your family history.

The Patient From Hell Podcast (39:38.604)
I super appreciate it. I have a last question for you. You ready?

Wenora Johnson (39:43.68)
I'm ready. I'm ready.

The Patient From Hell Podcast (39:45.64)
Okay, where is the name Wenora come from?

Wenora Johnson (39:48.119)
You got me. Okay. The name Wenora is an accidental name that I received from the hospital. So the story behind that is, is that my name should have been Winona, which is Native American for first born and the hospital spelled it wrong and spelled Wenora. And so my mom loved it so much that she kept it on my birth certificate.

And the funny part about all of that is growing up about why she wanted the Winona initially, is that she always told us that we were part Native American, you're part Cherokee Indian, all that good stuff. Only years, many, many, many years later to find out through genetic testing and ancestry testing that I'm actually 0.00001 % Native American,

but that I am 20% Irish.

The Patient From Hell Podcast (40:51.736)
So funny. Yet another reason to get genetic testing done.

Wenora Johnson (40:55.031)
That's why genetic testing is so important. We need to know where we come from.

The Patient From Hell Podcast (41:05.017)
Thank you so much for being a guest on this episode. I really, really have loved our conversation and thank you for filling me up with all the emotional tokens I need for the weekend.

Wenora Johnson (41:14.007)
You are so, so very welcome. Thank you for this opportunity to talk to you and to share a little bit about me. And maybe one day we can do part two. I've got to tell you about the clinical trial that I'm in for lynch syndrome.

The Patient From Hell Podcast (41:26.913)
Definitely.

Alright, There we go. Alright, that's a pre -pro sequel? Preview, preview. Preview for part

Wenora Johnson (41:40.939)
There we go.

The Patient From Hell Podcast (41:43.5)
Thank you.

Wenora Johnson (41:44.375)
Thank you.