Transcript
Adam: [00:07] From Susan G Komen, this is Real Pink, a 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. Having a family member or friend with metastatic breast cancer is challenging. For people who love and care for the person with the metastatic breast cancer, it can be difficult to know what to say and how to help. There is no easy way to adjust to a metastatic breast cancer diagnosis. Shock, disbelief, anxiety, fear, anger, grief, and a sense of loss of control are common emotions, but there are some things you can do to help. To tell us more I’m happy to introduce Michael Allio. Michael, welcome to the show.
Michael: [00:48] Hey, thank you so much for having me here. It’s an honor.
Adam: [00:51] Let’s just dive in, give us your story. What are you about? Why are you here?
Michael: [00:56] Yeah, so Laura and I met, my wife , about sixteen years ago. We met at Loyola University Chicago. I was a freshman in college, she was a senior in high school. Now a little backstory, Laura was all academic, very smart, heralded and courted by all the big Ivy League schools, and Loyola is a good school, but it’s not even close to those. So the first time I saw Laura, I was a freshman in college and I saw this talent just walk into our dorm looking around and I had to really put it on fix. I needed her to come back the following year. Started putting on some of the old Sicilian charm that I thought I had at the time. I realized that it wasn’t as strong that I thought it was and in the end she bought it, believe it or not, and she ended up the following year coming to Loyola.
[01:51] We stayed together from that day for another sixteen years, had a child in 2016 and then about seven months after delivering James our two-year-old, she was diagnosed with triple-negative breast cancer. And the way that it came around was so crazy because our son, he was the kind of kid that just ate everything. He actually stopped taking breast milk from that side of her breast.
Adam: [02:22] Oh Wow.
Michael: [02:22] It set off some alarms and it was somewhat like you got to pay attention to your body. Go with your gut instinct. Laura actually went to the OBGYN to talk about the lump in her breast and the fact that James was no longer taking milk that way and she dismissed it. I don’t know, I don’t blame her for anything really. No bad feelings, but we were persistent and it went from happy kind of healthy life being a new parent to mammogram to a biopsy and then to stage 2B cancer.
Adam: [02:58] Wow.
Michael: [03:00] Just overnight.
Adam: [03:01] Wow. I mean what’s the emotion like in all of that?
Michael: [03:05] I think anybody who’s gone through this, they can remember the day they got the call. You know you’re always waiting for that doctor’s call to ring and when it actually does you’re always assuming that it’s good news because things like this don’t happen to people our age. Laura was diagnosed when she was thirty-one years old and so with not really a deep family history of it and so I was at work, she was at work. My phone rang, I answered the phone call and she said, “Michael, I have cancer. Can you come pick me up?”
[03:44] And I got in my car immediately, just adrenaline running like crazy. Drove ten minutes to go pick her up and she was outside of her office building just by herself sitting on the stairs, just kind of staring at the floor and I pulled up and my face is all swollen. I am just sobbing. It didn’t hit me until I started entering the parking lot and I knew I was going to see her. I remember exactly the face she made when she walked over to me. She was very clear-eyed. She was obviously sad, but she looked at me right in the eye and said, “Michael, we’re going to make a purpose out of this.” I remember thinking like, wow, I thought I was the strong one in this relationship. It was the most amazing thing I’ve ever seen. The courage that she had during her most difficult time.
Adam: [04:33] Wow, wow, that’s amazing, and so walk me through the next steps. Like how did you begin and how did your wife begin to cope with this?
Michael: [04:42] Yeah, coping is a strange word because it almost feels like acceptance a little bit and for us we never accepted it. It was going to be around. We treated it like an enemy. I mean you’ve got the complexities of what happened within a relationship as a young couple raising a young child at the time and then you’ve got your medical mission and your plan. They’re almost two separate things and you know the way that we coped under our roof was really to provide full support. Have myself read as much as possible, have her read as much as possible, trying to filter out all the trash and misinformation that exists online because there is tons of it.
[05:29] And then sometimes you open yourself up to other people’s opinions and those aren’t always welcome so you got to shield yourself from that, but at the core of it was deep love, deep commitment to defending our family. We always went about it like we have cancer, not that she does. It wasn’t her the patient, me, the caregiver, it was we do because from the day we first met we were always just like one. I mean it was just a natural kind of fit. It was amazing and I mean, I can honestly say I never took it for granted.
Adam: [06:06] Right, wow and you mentioned other people and did you do anything to create a support community around yourself or around your wife or around you both?
Michael: [06:18] Yeah, so I mean if we flashback a little bit, I mentioned when I pick Laura up, she said we’re going to make some purpose out of this and so that very night, Laura actually took all of her messages straight to Facebook Live and what the goal was, was really to bring people behind the curtain to see what it is really like for a young married couple that is dealing with cancer and fighting the battle of their lives. All of the complexities, the rawness, the realness and we did everything from announcing to the world that Laura had cancer, to providing advocacy and information out there to bringing people into doctor’s offices. You know there was one day where Laura came home from work and her hair continued to fall out and she was just kind of holding onto it and I could see that it was making her really sad.
[07:16] And so we kinda had this freeing experience where I shaved her head on Facebook live just because it’s empowering when you take it and the cancer doesn’t. You know I remember she was shopping around for wigs for a while and she’d come back home for some really goofy looking ones. We were having fun with it. You know we’d put them on the dog, we would put them on our son trying to provide some comedic relief during this crazy time and she didn’t need them. She was pretty anyways and she never really wore them. She wore them for like one week and then she was done with it because she wanted to show the world what a woman with a diagnosis could do and her actual actions in her daily life were insanely inspiring. I mean we don’t even have close to enough amount of time to cover it all.
Adam: [08:11] Wow, that’s amazing. I mean I love the attitude. I love how you attacked that whole scenario. That’s really fantastic. You mentioned like it was ‘we” fighting breast cancer and you mentioned that you didn’t necessarily play the caregiver role, but I’m sure in some ways you had to support, right, and so what are some of the ways that were the most meaningful ways in which you supported your wife?
Michael: [08:36] The best way that I’ve been able to understand it for myself is cancer to a lot of people feels like a series of events. There is the diagnosis, there are updates on scans and doctor’s appointments, there are surgeries, there are these hallmark episodes that happen throughout the cancer journey. What I like to think of are micro-moments. They are thousands of moments that are happening every single second that you either are supporting or you’re resisting. Those things could be as big as staying overnight at hospitals and taking them to appointments, to researching the doctors, understanding the therapies, getting the diet right, all of those things. You know that’s in terms of the physical, then the mental side of it is looking at mindfulness, engaging in things that seem crazy to you and just saying if she wants to do them, let’s just do them.
[09:43] And crazy diets, I mean, we were vegetarian, pescatarian, vegan, Kedo, I mean Paleo. I mean it changed every single week and I did all the cooking in the house and I’d buy a bunch of stuff and she’d be like, ” Oh, we’re not doing that anymore.” And you know after I spent like three hundred bucks on groceries she’s like, “Don’t you know, this week we’re going to Kedo.” And I’m like, “Oh like oh my God, well all I’ve got is mushrooms. What am I supposed to do here?” But in moments like that, that’s a micro-moment don’t roll your eyes, just take the beating and support her.
Adam: [10:20] Man, I love the way you frame that out. The idea of micro-moments and just embracing each and every tiny opportunity that you can to support your loved one. That’s kind of an amazing idea. It’s really inspiring. It’s really, really good.
Michael: [10:35] Thank you.
Adam: [10:35] So what are some good sources of support? You mentioned the black hole of the Internet. You know there’s a lot of stuff out there, a lot of incorrect stuff out there. What are some good starting points for people?
Michael: [10:46] You know I always feel really bad for people that don’t build their own team and that is having a trusted network of people that you feel have your best interest in mind, and these are people that are equally as motivated as you. Educated as you want them to be. Lot of conspiracies out there and I’m not even going to touch on that because that’s a whole different podcast.
Adam: [11:13] Yeah, it is.
Michael: [11:13] But people that your personalities even meld with and it’s a complex web that you have to navigate, but you have to have your inner core of people that when times are tough you have individual people that you reach out to and use for different reasons. I mean we would have people that we trusted watching James if Laura went neutropenic in the middle of the night that they’d be over in two seconds. It was really about the support team that we had and allowing yourself to be helped and knowing that people wanted to help you because you can’t do alone and if you try it’s not being noble, it’s being dumb.
Adam: [11:57] That’s right and that’s the key, allowing yourself to be helped. That’s the critical and I think that’s a lot harder for some people than others, but I think it’s critical in terms of building a community of support. You got to allow yourself to be helped.
Michael: [12:09] At the end of the day it’s all about survival and so your survival mechanisms start kicking in trying to figure out what do we need in order to maintain a healthy relationship between husband and wife. Be happy and supportive to our child while at the same time battling cancer that just was ever-changing and people are a part of that and you got to be humble. You got to take it and you got to allow people to help.
Adam: [12:41] That’s right. Michael, for those that are listening that might have metastatic breast cancer or a loved one with metastatic breast cancer, what are your final thoughts, your final pieces of advice that you might want to give to them?
Michael: [12:52] Yeah, I mean as far as our journey Laura was cleared from cancer twice during our journey. We went on two separate vacations thinking that we were completely in the clear and we rode that roller coaster up and down. And you know when you get to metastatic breast cancer it does hit you like a thousand tons because you’ve worked so hard to stay away from there, but what I can say, and this is what we did is we really practiced a lot of mindfulness. We engaged in things that brought us joy, relieves stress, allowed us to create memories not as though things were ending, but just experience and absorb some of the joys that probably passed us by during our regular life. And it’s amazing when you allow yourself to do that how much of a fulfilled and happier life you can actually lead. Sometimes when everything in your world is falling apart, putting another at the center of your world, serving something greater than yourself allows you to have some purpose that are beyond just the struggle of your life and provide a good distraction for you. That’s actually a great way to help you cope and to help you enjoy whatever time anybody has left because none of us ever know.
Adam: [14:19] That’s right. I love the idea of practicing mindfulness and how it helps you to really appreciate the simple things in life. That’s great and really live a very full way. So, Michael, this was really amazing. I love the work that you’re doing. I love your attitude, your enthusiasm. Thank you so much for being on the show. I’d love to have you back again sometime.
Michael: [14:41] Can I plug the L4 project?
Adam: [14:43] Yeah, yeah tell me about the L4 project. Let’s do it.
Michael: [14:44] All right, I got to. So about four weeks after Laura passed, I was trying to find a way to preserve her legacy and I actually created a brand of clothing online that’s called the L4 project and you can find it at L4project.com and all of the designs have been created by me. It’s available online. All proceeds do go to charity and what we actually do is we identify certain charities and the inspiring people that are using their services every day. We provide them with a cash donation to help them with education assistance or health care costs or lifestyle improvements and then we actually will work with that particular charity to design their own piece of apparel that we’ll sell online. They’ll be able to get all the proceeds from that garment in perpetuity, so it’s a good way to raise awareness for that particular cause and also to create some good by disarming tragedy.
Adam: [15:49] I love that you’re doing that. I’m going to check that out. I appreciate the good you’re doing in the world and so let’s talk again soon.
Michael: [15:54] Alright, sounds great man. Take care.
Adam: [15:58] Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.komen.org, and for more on breast cancer, visit komen.org. Make sure to check out @susangkomen on social media. I’m your host Adam, and you can find me on Twitter @ajwalker or on my blog, adamjwalker.com.
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