MBC Week – Physical

[00:00:00] Adam Walker: In honor of national breast cancer awareness month, if you’d like to join the fight against breast cancer, please go to www.komen.org and donate today.

[00:00:20] Adam Walker: From Susan G Komen, this is the Real Pink podcast, exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room. This week on the real paint podcast, we are having real conversations about metastatic breast cancer. We’ll be welcoming people living with metastatic breast cancer to share their stories, their experiences, and their words of encouragement.

Everyone can make a difference in the life of someone living with the disease by donating to breakthrough research. And during the ongoing treatments necessary when living with metastatic breast cancer can have far reaching physical side effects, including muscle and joint pain, fatigue, loss of appetite, vomiting, and nausea, often things you take for granted, such as walking or even standing can become a challenge.

Luckily, symptom management in supportive care is available with the aim to prevent or relieve some of these signs. But the reality is that an MBC diagnosis can often drastically change your day to day life here today to share his story. And now he made it just his journey with metastatic breast cancer is Kirby Louis Kirby.

Welcome to the show.

[00:01:31] Kirby Lewis: Thank you for having, I appreciate being here and I, uh, I love talking about this.

[00:01:37] Adam Walker: Well, I appreciate, uh, what you have to share and I can already tell it’s going to be a lively and really valuable conversation. So let’s start with your telling us a little bit about yourself and your breast cancer.


[00:01:49] Kirby Lewis: so 2012, um, I had a persistent cough and a cold and I attributed it to allergies. Um, but, uh, one night late, I had, uh, we’d gone to bed. My wife was already sound asleep next to me and I sat up in bed, grabbed my chest coughing. And when I did, I discovered a lump. I have no family history, but immediately I just knew that it was breast cancer.

And I woke my wife up and I said, honey, honey. I said, I just found a lump in my breast. And she says, oh, for goodness sake, she said, go back to sleep. She said, you’ve got breast cancer. I got prostate cancer. Not just. Well, unfortunately, uh, she didn’t have prostate cancer, but unfortunately I did end up with a breast cancer and I tell people, uh, that, um, breast cancer saved my life.

And, uh, the reason is, is because after, uh, uh, numerous. The amount of test to actually determined that I did in fact have breast cancer. Uh, I was being, um, routinely prepped for surgery and they discovered that I needed to have open heart surgery as well. So literally in a matter of three months time, I had a mastectomy, a radical mastectomy and a open heart surgery.

Um, Had I not discovered or had they not discovered that I needed to have them to me, they would have never discovered, uh, the heart issue. And, uh, my thoracic surgeon said, yeah, you could just walk down the street one day and died. Wow. I feel very blessed in that respect. Um, so I’m going to fast forward then four years later and.

In 2016 and in January I had had pneumonia and I had been in the hospital, uh, have tests run and x-rays and things. And they finally, at the end of January declared that my, uh, you know, I had no of non anomalies. Um, my chest looked clear and my lungs were clear and, uh, and I was ready to go. Now, this is the part that really surprised me.

Six weeks later, I went into the hospital in the middle of March for some really minor plastic surgery. I have little skin tags around my eyes and I was having them removed. And here again. Uh, coincidentally, they do these texts, um, and they’re all just routine, you know, and for me, um, I really wasn’t expecting anything other than, okay, we’re just going through the paces.

The x-rays showed abnormalities. And immediately I told my wife, I said, my kids switched back and she said, well, how do you know that? And I said, it just takes one cell to get. And I said, if your body already has the propensity to turn these cells on, um, to, uh, cultivate cancer, It’s going to, it’s just a matter of time and I really didn’t expect it because it was only six weeks earlier.

So that was the thing that surprised me. I had recurrence in both lungs and in my spine and my, my lungs lit up like Christmas trees. And that’s what really, it just is what amazed me at the speed at which, um, you know, cancer acts. And I’m gonna. Transitioned through here. Um, I got along well with my treatments and things.

Of course I had, I started a chemo regimen. I was blessed that I never had any type of nausea, um, or any, really any major side effects. Um, so, um, I did have about where my temperature spiked and I ended up spending the time in the hospital and because of that, I ended up having to have. Uh, a blood transfusion and I was in there for like 10 days, got out, uh, went to my mother-in-law’s funeral and, uh, was back in the hospital for five more days.

So, um, but th that, that was a. In the summer of 2016. So I’d only been in India Kima for just a couple of months. And I actually, it was at the end of the, uh, I was on chemo for 16 weeks. The first time I started on a regimen of medications, um, and my doctor was trying to get. Into a clinical trial at, um, at NIH.

My cancer care, uh, is through the veterans administration hospital in Washington, DC. And, um, we, she was trying very desperately to get me into a clinical trial and most of the fall, um, you know, It just wasn’t happening. And I went in for my routine scans on November the fourth of 2016. Um, I had left the hospital after my scans and she calls me up and she says, I’ve got good news and I’ve got great memes.

And I said, you’ve got that mixed up. It’s good news and bad news. And she said, no, this is good news. And she said, what do you want to hear first? I said, well, tell me the good news. Cause it doesn’t sound as good as the great, so. She said, well, the good news is, is, uh, you got into the clinical trials. And I said, I did.

I said, well, that sounds like great news. She said, well, they’re not going to take yet. And I’m like, well, what do you mean? You just said, I got into it. She said, well, the problem is you don’t have any evidence of disease. She said, that’s the greatness. And I said, well, what do you mean? And she said, you know, there’s no evidence of disease.

You don’t have any cancer. And I said, where does it go? So it kinda just leads you at leave. It left me, um, just as quickly as it had kind of come to me, uh, for recurrence anyway. And, uh, so I had 32 months. Of, uh, no evidence of disease. And then I, I had recurrence again. Um, but, uh, it came back as a small, um, nodule on my right lung and, um, and it, it has grown.

Um, a little bit, but, uh, with proper treatments now, and I’m back on a chemo treatment, which is why I have this beautiful hairdo. You can’t see it, but, but, uh, Adam can see it. And, and, uh, I tell everybody now that I, I get to look like uncle fester from the Adams family. So you have to embrace yourself. You know, I’m not suggesting that you embrace cancer, but embrace the life that you live.

Embrace the time that you have as a stage four metastatic breast cancer patients? Um, yes, I’m a, I guess I’m a survivor. I’m a thriver, but I’m basically, I’m a patient. I still go to the doctor regularly, you know, I still get medication regularly. And by my definition, that makes me a patient, um, More importantly, I I’m alive and that’s, to me the big message that I, I carry forward now years ago, when I was first diagnosed with breast cancer, as a guy, I went around telling everybody, Hey, did you know that men have breasts, that men get breast cancer?

Then I had a couple of incredible experiences. Uh, on this cancer adventure. When I was a kid growing up, I had a poster. I was a downhill skier and this poster of this guy going down the map. It was, it was an exciting picture. And, uh, the statement on the poster read life is a daring adventure or nothing at all.

So I would wake up every morning to read that poster and it just kind of became ingrained in me and it became who I am. It became part of who I am. Uh, the day that I got diagnosed, this is going to be the greatest adventure I’ve ever been on. And I guess it’s part of that embrace life. You know, philosophy that positive, uh, tenacious attitude.

That that is really just inbred in me from, from reading this poster day in and day out. My mission statement now is ladies don’t be concerned just about your daughters. Be concerned about your child. Because they are, both of them are vulnerable. Right. And you know, don’t grandmothers, don’t be concerned about your granddaughters.

You concerned about your grandchildren.

[00:11:21] Adam Walker: Yeah. That’s really good. So, so I want to, I want to dive a little deeper into the MBC side of this for a minute. So talk to me like, what are some of the realities of living with MBC from a physical perspective and how have you and your family had to adapt to that?

[00:11:43] Kirby Lewis: This is a pretty, but neither is metastatic breast cancer, but I’m going to be real honest here. Um, It can be a pretty shit. It’s not a pretty, pretty disease, you know? Um, I’ve given up so much of my life of who I am and so many ways, and it’s been hard, um, because of that tenacious, um, spirit filled drive that I have to want to pursue.

Um, it’s been hard for me, um, as a craftsman and an artist to say, you know, I don’t have the strength to use a drill driver screwdriver, um, to, to drill a screw. I have to get somebody else to do it. It’s hard for me to say I can’t hold a board on a, on a table saw. Um, it’s hard for me to say I can’t, uh, carry a bag of groceries in for my wife.

You know, so she does it. I wish it were easier and I’m not complaining because I really truly feel like I’m too blessed to complain about it. But the reality is, you know, if we want to talk realities, you know, there is a downside to it for sure. And I still feel as though here I am over five years into this, that I’m very, very blessed because a lot of people, of course, don’t have a five-year 10 year.

Metastatic breast cancer. Um, a lot of people are debilitated to the point that they can’t get around. And at times it’s very difficult for me as I go through these stages and they, they kind of, uh, have, uh, uh, an ebb and flow to them where they, you know, one day I’ll feel really, really good. And the next day I feel like.

It’s this constant rollercoaster that you’re on up and down for me, I’m probably a little unusual in the fact that, and maybe this is because of being a man. Um, I I’m sure that there is a certain amount of machismo that, that enters into this, uh, equation. Um, but, uh, you know, there are so many times when I feel like I should be able to do something.

And I can’t, you know, be it something as menial was carrying in the groceries and, um, I’m very shaky. I’m very teetering. I’m 61 years old. So, um, I don’t feel like I’m 61. I feel like my mind says, man, I I’m just like really good downhill skiing and, and do those things that I’ve always done.

I, I, I, I grew up, uh, taking piano lessons and I haven’t played for a long time just because of being busy with life and stuff. And yesterday I sat down at the piano and my fingers don’t work. Um, I have neuropathy in my fingers and in my feet. And thankfully I still have enough feeling that I can have that sensation to grab on to things and stuff, but there are some things like just simply buttoning a shirt that sometime is, um, is a little more difficult than other times, understanding that, Hey, you know what, this is part of it.

And you just have to accept. You don’t necessarily want to, but you don’t have a choice.

[00:15:24] Adam Walker: And I wanted to actually explore that just a bit more. Um, you know, you obviously have a pretty good attitude, a pretty good perspective on life and health and family. Um, is there any one thing or any, any few things that sort of give you that strength to keep going and, and how would you describe.

[00:15:42] Kirby Lewis: Without a doubt. I grew up, uh, in the church. I had a very strong faith, a very I’m very spiritual. I can tell you personally that, um, I don’t think that I would have been able to be in a position that I am, had it not been for my faith. You know? So that’s the number one thing. The number two things is I have an amazing loving, caring, devoted.

I can’t even describe how, how she is with me and how she makes me feel. She’s just everything to me, followed very closely by my grandchildren. That’s

[00:16:27] Adam Walker: good. That’s, that’s a, that sounds like a really good perspective. How many grandchildren do you have?

[00:16:32] Kirby Lewis: Yeah, we have two. Oh, that’s wonderful.

[00:16:37] Adam Walker: Well, that’s great.

Well, so this has been really great. I mean, I, I really appreciate you sharing both your positive outlook on life and on, on being a patient as you described it, but also just sharing the struggles through that process. It’s really, I think really impactful for me and for our listeners as well. But if there’s one message you can leave our listeners with, what would that message.

[00:17:04] Kirby Lewis: Um, as long as I’m sucking oxygen, I’m alive and I want to live a life that is lively. And I may do that from my bed. At times. I may do it from, uh, a mobile scooter at times. I may do it with a cane in my hands at times, and I may do it just me walking down the street in my normal stride, but I will tell you that.

Having a ability to cope is huge. I believe. And more importantly, don’t live for yourself. Live for your family. Live to make good memories for them to have. Because your life you’re still alive. Don’t crawl in the corner and say, oh, woe is me. I’ve got stage four breast cancer and I’m going to die. Guess what?

We were going to do that before we were going to, before we were diagnosed. So live your life. And the main thing is don’t be concerned about your daughters be concerned about your children, and that is. Oh, I can tell you live your life. Enjoy every day, make the most out of it. If you can’t get out of bed, read a book, call somebody, listen to some music, whatever it takes so that you can cope with tomorrow.

Hopefully getting up out of bed and moving. Hmm,

[00:18:39] Adam Walker: that’s great advice. That’s really, really great advice. I appreciate your outlook. Appreciate your you’re just sharing your life and in this moment in time with us and Kirby, thank you for joining me on the show today,

[00:18:51] Kirby Lewis: Adam. It is absolutely my pleasure. I tell you, I get so much joy out of hoping that I can help others cope, learn how to do that and just live.

[00:19:05] Adam Walker: Support for MBC week is brought to you by our partner. Merck. Thank you for joining us for this special episode of Real Pink focused on metastatic breast cancer. You can help the metastatic breast cancer community today by donating to breakthrough research by visiting komen.org Ford slash MBC donate.

Thanks for listening to Real Pink, a weekly podcast by Susan G Komen for more episodes, visit Real Pink.com and.org for more on breast cancer. Visit komen.org. Make sure to check out at Susan G Komen on social media. I’m your host, Adam, you can find me on Twitter at AIG Walker or my blog, Adam J walker.com.