Advocating as a Man With Metastatic Breast Cancer
Listen to the podcast to hear Michael talk about:
the importance of the doctor-patient relationship
the importance of a support system
deciding not to let fear run his life
becoming an advocate and sharing his story
how being stage IV has helped him live his truth
Sadly, Michael passed away from metastatic breast cancer in September 2021. We are forever grateful he was a part of the Breastcancer.org community.
Michael Kovarik was a retired elementary school teacher diagnosed with metastatic breast cancer. He was the author of Healing Within: My Journey with Breast Cancer and the former host of the Healing Journeys with Michael Kovarik radio show. He was also one of the people profiled in Breast Cancer: A Story Half Told, a campaign to increase public awareness of metastatic breast cancer. Since his metastatic diagnosis, Michael participated in a number of advocacy organizations, including the Male Breast Cancer Coalition, the MBC Alliance, and METAvivor.
Sadly, Michael passed away from metastatic breast cancer in September 2021. We are forever grateful he was a part of the Breastcancer.org community.
— Last updated on May 16, 2022, 3:06 PM
Jamie DePolo: Hello. Welcome to this edition of the Breastcancer.org podcast. I’m Jamie DePolo, the senior editor at Breastcancer.org. We have a very special guest today, I’m very thrilled. Michael Kovarik is a retired elementary school teacher who is living with metastatic breast cancer. He is the author of Healing Within: My Journey With Breast Cancer and the former host of the Healing Journeys With Michael Kovarik radio show. He was also one of the people profiled in Breast Cancer: A Story Half Told, a campaign to increase public awareness of metastatic breast cancer.
Michael discovered a lump near his left nipple, which was beginning to invert, and was diagnosed with breast cancer in January 2007. After his diagnosis, he had genetic testing and learned he had a BRCA2 mutation. In 2010, Michael had a cancer recurrence on his chest wall, which was treated with hormonal therapy and radiation. In September of 2015, a persistent cough led to a CAT scan, which showed abnormal lymph nodes. A biopsy later showed that the breast cancer had metastasized to his lungs.
Since his metastatic diagnosis, Michael participates in a number of advocacy organizations, including the Male Breast Cancer Coalition, the MBC Alliance, and METAvivor. Later this month, in fact, he’ll be driving the METAvivor RV through Washington and Oregon to raise awareness.
Michael, welcome to the podcast.
Michael Kovarik: Thank you so much, Jamie. I am so happy to be here.
Jamie DePolo: We are thrilled to have you. I’m wondering if you could talk a little bit about your life before your initial diagnosis and the thought process, the feeling process, that you went through when you learned you were a man who had been diagnosed with breast cancer. Was that even something that was on your radar?
Michael Kovarik: Not at all -- and it was something I never heard of because, after finding the lump with the inversion, my GP automatically set me up with a surgeon, and they pretty much all thought it was a cyst. So, when I went to the surgeon like a week after the surgery, after the lump was removed, I went by myself because I was like, “This is just a cyst.”
Jamie DePolo: Nobody even suggested cancer?
Michael Kovarik: Well, yeah, they had not at that point, and friends were like, “Are you sure you don’t want someone coming with you?” I’m like, “No, no, no, it’s just a cyst.” And so, we’re there, and the very first words the doctor said was, “You know, Michael, I wish I had better news.” And he was talking, and he said, “The lab report is saying that they feel it came from your lungs, the cancer.” He goes, “But your GP and I have been talking, and we feel that you are one of those rare cases of male breast cancer.” I remember sitting there going, “Wait a minute -- breast cancer? Breast cancer? Women get breast cancer. I’ve never heard of a man getting breast cancer.”
And so, I kind of just went into this shell of -- and all I’m thinking is, “Breast cancer…breast cancer…,” in my head, and the doctor was talking in the background…
Jamie DePolo: And you heard nothing?
Michael Kovarik: I heard nothing, and I was just like, “How is this possible?” One of the things that I have to say is, I’ve been so fortunate with the physicians that I’ve been dealing with on this journey. And my GP at that point had been my GP for over 18 years, and he had said to the surgeon, “You do not have Michael leave that office until he calls me.” And so I did and went to see him that day, and the thing he said was, “You know, Michael, if it came from your lungs, we would have known. I truly believe that you have breast cancer.” And he just kind of laid things out -- and at that point I had someone with me to listen, because I knew at that point I was not doing a very good job of listening.
And I think with anyone -- I think any woman who hears it -- your world is just kind of stops, and it’s just tumbling. I just got this sense of everything was just like tumbling around, and I was like, “How is this possible?” And so then he hooked me up with this phenomenal oncologist who was not taking new patients, but agreed to take me on. And she was a wonderful teacher in how important that relationship is as you’re going through this journey.
Prior to my diagnosis, I was just living my life. I was living outside of Albany, New York. I was teaching elementary school, just kind of living and doing, and then all of a sudden you have this diagnosis, and you’re like, “Oh, my gosh.” I was single and just trying to deal with all of that. And so it kind of started this amazing, amazing journey. Not that I’m thrilled to have breast cancer, but looking at it in a different way. And it took me a while, because when I first got diagnosed, fear just was in the driver’s seat. It was there. It was just leading me down this path. And all I had in my head was -- they had put me on tamoxifen, I was having side effects with that drug -- and all I kept saying like every day was, “Get me to the 5-year mark. Get me to the 5-year mark, I’m done with this, and I can go on living.”
And I had no idea that I was putting my life on hold. Because all I was looking at was this 5-year mark -- which I now know really doesn’t mean anything. But, at the time with where I was and what knowledge I had, that’s how I was dealing with the breast cancer.
Jamie DePolo: Sort of a way to keep it compartmentalized.
Michael Kovarik: Yeah. Yes, and it was like this is a separate entity of my life, I’m not going to allow it to become part of me. So, I was fighting the drug, I was angry every morning I was taking the tamoxifen pill. I was like just, “Okay, I’ve got 1 year down, 4 more to go.” But also within that year I had the BRCA2 gene discovery.
Jamie DePolo: Yeah, how did that come about? Did your doctor suggest it?
Michael Kovarik: Yes. You know, that’s a great question because thankfully, my oncologist -- because my dad had passed away from pancreatic cancer back in the ‘90s -- and so, she had talked about doing this genetic testing. And so, first my insurance company was not going to pay for it. She fought it, and then the second time they agreed, and it came back positive. And, unfortunately, where I was at that time, to me it was just like another layer of cancer on me. It was like, “Okay, what else is going to come down?”
She also encouraged my mom, my brother, and my sister, that I talk to them and have them tested, which they were, and they were all negative. So we realized it came from my dad, which even back then in 2008 -- no, it was 2007 when I found out, I’m sorry -- that it was still new, that knowledge of the BRCA gene, especially that breast cancer could even be passed down on the male side.
Jamie DePolo: Yeah, a lot of people don’t realize that it can come from either side.
Michael Kovarik: Yeah. Yeah, you know…
Jamie DePolo: Was there a history in your father’s family that would suggest…
Michael Kovarik: It was just… his parents came over from Czechoslovakia. He really had no history of the family back there and so on. So, it was just kind of, we’re with us, this immediate nuclear family here in the states. And so I was dealing with that, too. Just like counting the days to that 5-year mark.
And then my initial oncologist retired, and I was with another oncologist within that practice -- which is a big practice in upstate New York -- and, thankfully, she found… she didn’t like something in my scar where the initial surgery had been, and sent me in for an ultrasound. And when they decided to do a biopsy, when I was there for the ultrasound, I knew something was not…
Jamie DePolo: And this was in 2010?
Michael Kovarik: Yeah, and so of course I sat there going, “Okay, now we’ve got to start from day one, just --”
Jamie DePolo: Now it’s 5 more years….
Michael Kovarik: -- Still in that mindset of putting everything on hold. So, when I realized the cancer had come back -- and at that point, Tim and I had been together for a couple of years, my partner Tim -- and so he was with me. And I’m so grateful for this doctor. And what was interesting was one of the things she said to me when she was telling us what the new therapy was going to be -- I was going to be doing radiation plus a hormonal therapy -- because she said to me, she goes, “Michael, we really don’t know what to do with men who have been on tamoxifen and the cancer comes back.”
And I remember sitting in her office going, “It’s 2010, how could you not know what to do?”
Jamie DePolo: Just because the research isn’t there, because there’s not enough diagnoses to study -- I mean, that’s a problem.
Michael Kovarik: Yeah, which I was still not aware of. Because I was, at that point, so shut off to the cancer community, because I just wanted to be done with it.
Jamie DePolo: Well, you don’t want to be a part of it, right?
Michael Kovarik: Yes, and so you’re kind of going along and trying to figure things out, and…
Jamie DePolo: And you hadn’t met -- I want to make sure I have the dates right -- you hadn’t met another man with breast cancer either.
Michael Kovarik: No. No.
Jamie DePolo: You were the only one you knew.
Michael Kovarik: And I knew of no organization at that point, back in 2010, that was helping or guiding men going through this journey. So, at that point, I did this hormonal therapy for about 3 months and then I chose to stop it because I was having such severe side effects. Although this oncologist was an excellent oncologist -- she was knowledgeable -- but there was just no connection. And I remember, it started dawning on me, the importance of that relationship. The relationship I had with my first oncologist was so amazing that it was lacking in this one. And every time that I would talk to them about a side effect, their response to me at that point was, “Well, we can put you on this drug, also.” And I remember saying to them, “I don’t want to go on another drug. This drug is doing enough to me.”
At one point, I was in her office and we were talking, and I was sharing what I was going through and she had said to me -- in the midst of my conversation, she goes, “Well, I’m not stopping the drug.” And I remember sitting there -- and this is the gift I got from her, and how she had the relationship with me and with Tim -- that connection was lacking. And I remember I never felt like I was being heard. And I grew up where you never questioned doctors. You just didn’t do that. And I remember a voice inside my head sitting there going, “That’s not your decision, that’s my decision.”
And it was like amazing to me that I was saying that, because the person who I was, was not someone who would recognize my own power with things that I was dealing with. And that was this thing that just kind of clicked inside of me. I started doing a lot of reading on healing. I did, like, Louise Hay and a couple of other authors. And was really looking at how we choose to heal and our mindset within that healing and the connection of the mind, body, and spirit that I had never put together.
And that started me on a whole new path of this. I was at the point -- while I was seeing her, when I was going through all of this -- I was doing acupuncture, doing Reiki, doing shiatsu massage, and also had found a doctor -- a GP in Vermont, because we’re very close to the Vermont border, where we live in upstate New York -- who also did energy work; just the energy flow within your body. And everything that I was reading was really kind of leading towards the energy flow and how that helps healing. I was talking to him about the struggles with this drug therapy, the struggles with my oncologist, and he actually connected me with an oncologist in Vermont.
So I went to see her. And the minute she walked into the room that connection was there, and I knew that I needed to make that choice of switching. So, I actually went back to my old oncologist, and I reiterated -- and it was a great conversation, because I think she then realized the dynamics of our relationship -- but I knew I was making the right choice, and that I needed to go. That was a gift that I got from her, was the importance of that relationship with the people who are treating us, the people who are -- in a sense -- are our partners in our healing or in our living with this disease.
Jamie DePolo: Oh, absolutely. Because it’s not… you’re not going to have that connection with everyone, and so why would you think that you would have it just automatically with a doctor? You’re absolutely right.
Michael Kovarik: Yeah, and you know, Jamie, I think one of the neat things for me that’s been really blossoming within this journey is trusting myself and trusting that voice inside of me and saying, “Trust myself enough to know that I know the path that I need to take, and I know the type of people that need to be on this path with me.” That was an amazing, big step for me. Because I was the person just kind of, “Tell me what I need to do, get me to that 5-year mark, I’ll do anything you’re going to tell me to do.” And yet in this span, it was changing.
And so, in 2012, I made the decision to take an early retirement from my elementary school teaching. I had enough years in -- I was at 55 where I could buy into my insurance, because who was going to give me insurance back then? And so, I knew the passion -- that one year, with all that was going on, and I also had a very challenging class that I was dealing with -- and I realized the passion was gone. And the following year when I went back and the passion didn’t come back, I was like, “Okay, I have to listen to this.” And when I found out that I could take an early retirement, I just think there was another step that was coming -- I didn’t know what it was -- but I had to trust that there was another path that was going to be unfolding.
And so I made the decision to retire, and that following November, after my retirement, I sat down and started writing about my experiences of being a man living with breast cancer. And I still, at this point, still had not met another man.
Jamie DePolo: But it does sound… I have to ask you this, it sounds like you -- I don’t want to say cancer became part of your life, but it was almost like you accepted that you were in that community now, like you weren’t keeping it… you didn’t have this dual life anymore.
Michael Kovarik: Yeah, that shield that I had put up, that wall was just disintegrating. And it was slowly disintegrating. And I think as I was becoming more comfortable with the fact that I had a voice in how I was treated, and I had the belief within myself that how I approach each day is going to help me heal -- not necessarily cure -- and I had a struggle separating those two, healing and curing, because they are two separate things. And I was finally starting to gravitate towards. “Let me really focus on healing.” And that, I think, is what helped that wall start crumbling down.
And so, I spent a good 6 to 8 months writing this book and eventually ended up self-publishing it through BalboaPress, which is an imprint of Hay House. And it was through that, then, the paper up by me out of Glens Falls, New York did an article on my journey as a man with breast cancer and the fact that I wrote a book. And after the article came out, I got an email from this woman, Peggy Miller, from the Male Breast Cancer Coalition. And I’m reading this email and I’m like, “I never even heard of this,” because I was not one to be on the internet. And that’s also why -- I was not a big internet person, and this and that -- which I’m also grateful for, because I know that there was so much misinformation out there. And, actually, friends had told me, “Michael, it’s probably good that you’re not reading a lot of the stuff about breast cancer, and especially about male breast cancer that’s out there.”
But, she reached out to me and asked if I would be willing to write my story, a small part for their website. And I went to their website and saw that there were these other men that were sharing their stories, like, “Oh, my gosh….”
Jamie DePolo: “…I’m not the only one.”
Michael Kovarik: Yes. And so, at that point, I did and I shared. And then a couple of times, I spoke to a couple of men on the phone. And it wasn’t until June of 2015, where Tim and I went down to New York City for a fundraiser for the Coalition, that I met my first male breast cancer survivor, who was Michael Singer and his wife Patty, who are like my brother and my sister -- they are family. And I thought, “What two better people to meet than these two.” And Michael, who has his own journey with breast cancer and not acknowledging -- it was “chest cancer” at first -- and then, now, is probably one of the most out there advocates for male breast cancer.
And so it was 8 years that I had gone without talking face-to-face to another male breast cancer survivor, and the power of that is absolutely amazing.
Jamie DePolo: Oh, yeah.
Michael Kovarik: Amazing.
Jamie DePolo: It’s just -- you’re not alone, you have somebody who understands exactly what you’re going through.
Michael Kovarik: And it would occur, that a couple of months later, I was diagnosed metastatic. And to have these people there was such a blessing. It’s such an anchor for me, the people in the Coalition. And stage IV has its own dichotomy -- its own story, its own parameters, its own path -- compared to early stage.
Jamie DePolo: Very much so.
Michael Kovarik: You know, I’m still, still learning more about it.
Jamie DePolo: Well, I want to ask you, too: being diagnosed with metastatic disease -- frightening, shocking, makes you angry, just horribly angry -- but when I talk to you, you are, to me, one of the brightest, lightest, calmest, most loving spirits -- just this positive energy radiates from you.
Michael Kovarik: Oh, thank you.
Jamie DePolo: So, I guess if you could talk a little bit about -- and I know it’s a struggle, like it’s a struggle for you internally. But, so how did you come to that place of, sort of, internal strength? And what sort of external support have you had? Because I know you have had that, too, and I’m sure that helped.
Michael Kovarik: Yeah. Oh my gosh, that’s a great question. You know, I think a lot of it was my partner Tim, who’s been an absolute source of positivity for me and an anchor for me -- but also our friends. Even though we live out in the country, the friends that we have -- as I was going through the early stages, they were there, they were supportive, they were concerned. Having that family, also, all of that I think helped me. But you’re right, I mean, I knew nothing about metastatic breast cancer.
Jamie DePolo: And I have to ask you this, too: So did any of your doctors, your oncologists, talk to you about that possibility, that there could be a metastatic recurrence?
Michael Kovarik: No.
Jamie DePolo: Not even after you had the recurrence, nobody…
Michael Kovarik: No.
Jamie DePolo: Really.
Michael Kovarik: No. No.
Jamie DePolo: Wow.
Michael Kovarik: And I think that’s what amazes me. And as I become involved, and especially with METAvivor -- which is solely focused on raising money for metastatic breast cancer research -- in one of the discussions they were sharing how 30% of early stagers will progress to metastatic, and I’m thinking, “How is it that nobody says that? How come that’s not discussed?” Not to produce fear, but I think to say, “This is something we have to watch, you need to be very in tune to your body, you need to be” -- Because it was a shock for me, because I had this acid reflux cough. And I remember the cough had come back. And because of all the alternative therapies are out of pocket, I had kind of gotten to a point where I needed to kind of hold off on some of them, or all of them -- because money situations, because of the retirement stuff.
And so, the cough was getting worse, and I knew I needed to go back to acupuncture, because that usually took care of it. But the interesting thing was, the women who -- like Peggy and Laurie, who was with the Coalition back then -- kept saying to me, “You know, Michael, you need to get this cough checked.” And I’m like, “It’s my acid reflux cough. It just always starts when I start talking, and then it kind of goes away.” But I became more aware of it, that it was taking longer and longer to subside, once I started talking. And, because I have the BRCA2 gene, my initial oncologist -- and because my dad passed away from pancreatic cancer -- my initial oncologist hooked me up with a gastroenterologist that does an endoscopic ultrasound each year on my pancreas.
And so that September 2nd, I was in for my ultrasound, and Dr. Cohen came in, and he was talking to Tim and me. And thankfully I just mentioned to him the cough. And the interesting thing was, because my oncologist -- I had gone from 3-month visits to 6-month visits to 8-month visits because my blood work was excellent, and she was saying, “Michael, I’ve even been thinking maybe yearly visits because your blood work is just excellent.”
And so I told him about this cough and so he looked and he found the abnormal lymph nodes in my chest cavity. That’s how I found out it had spread.
Jamie DePolo: Did you immediately think that or… yeah, you did. Okay.
Michael Kovarik: I knew enough, because the universe works in amazing ways, Jamie. Six months prior to this diagnosis, I’m reading an article in our local paper. And, if I’m not mistaken who the woman’s name was Laurie Becklund, she was a former reporter for the LA Times. And she was writing about being metastatic. And I remember as I’m reading the article, I couldn’t even say the word correctly. I kept jumbling up the word, and I think it was like, I didn’t want to say it because I knew enough -- you didn’t want to go there. That is not where you wanted to progress to.
But I remember reading this article and reading how she was, like, 10 years after being told she’s fine, and then being told it’s everywhere in her body. And I remember sitting there going, “How? How is this possible at this day and age?” And so, it was interesting that that happened like 6 months prior to when I was going to be diagnosed -- but it got me thinking. And so, when we found out that it had spread, my oncologist immediately scheduled a PET scan for me, which I had on my birthday -- my 59th birthday.
Jamie DePolo: That’s a fine birthday present.
Michael Kovarik: Yeah. But it was like, “Okay, I’m going to find out what’s going on.” And then when we met with her about the results, and she was the one that said to me, “You know, Michael, there’s so little out still about male breast cancer.” So, this is 2015, and she’s like, “If you and Tim want to go for a second opinion, like to Dana-Farber in Boston,” she goes, “go.” And she goes, “Quite honestly, that’s what I would be doing.”
And so, she actually was going to contact this person she just would contact periodically to get information at Dana-Farber. But we went home, and then we spent the next 2 days calling people and letting people know and talking to people. And during that -- all my friends that were up around us -- the minute we shared it, their first words were like -- in their head they were thinking, “Oh, my God, he’s going to have to go through that chemo treatment.” And that’s what I was thinking. And they were like, “We are here, we will drive you. You are not going to be driving by yourself there, we are going to go. If Tim can’t go, there’s going to be people lined up.”
So, that was kind of like this comforting blanket that was starting to engulf me -- encase me, in a sense, is even a better word to use. And then we ended up going to Dana-Farber, and my oncologist is Dr. Eric Winer, who, at the time, I had no idea who he was in the breast cancer department.
Jamie DePolo: Oh, you didn’t… he’s a big deal.
Michael Kovarik: He is.
Jamie DePolo: He’s on our Professional Advisory Board, so yeah, he’s amazing.
Michael Kovarik: Is he? Oh, my God. Love that man.
But I mean, again, the universe directed me to him. And what was interesting with him was before -- we first spoke with a fellow when we were there, who was training under him -- and then he goes out, and he and Dr. Winer talk, and then they come in. And Dr. Winer came in, and this voice inside -- before he even said hello -- this voice inside my head just went, “Michael, you’re in good hands.” And I just felt a little more “Ahh.” Not totally, but “Ahh.”
Jamie DePolo: Because you’re listening to yourself.
Michael Kovarik: Yes. Yeah. But what was interesting, with those words that you said about being calm, being loving, being peaceful -- I thank you for that, and I’m grateful that that’s a part of me -- but the reality is it’s not the total picture of who I am. And especially at the beginning of this -- you did a great job of all the adjectives you would find that pop up when you’re hearing stage IV. My first thing was like, I actually -- normally, Tim is the one that asks the questions, because I’m in a fog during stuff. And it was me who asked, when we were going over the PET scan results, that I asked my oncologist in Vermont -- I was like, “So, what stage am I considered?” And she said, “You know, Michael, unfortunately you’re stage IV.” And the first words that…“death.”
Jamie DePolo: Right. Right. Everyone’s mind goes there immediately.
Michael Kovarik: “Oh, my God, I’m going to die, and I’m going to die very soon.” And so, all these other things that were happening were kind of tempering that a little. But what started happening after -- we had been to Dana-Farber, and I was home, and I was on treatment -- was I would go to these very, very dark places. And I could just sense when they were coming. And I didn’t know where they were originating from at first. And it eventually got to the point that I would just break down. And I ended up -- usually, when it was happening, not to scare our two dogs -- I went upstairs to our bedroom, and I’d close the door, and I would just fall apart, and then I would just start beating the bed. I would just pound our bed, and I would be screaming, and I’m cursing -- and I’m cursing God, I’m cursing cancer, I’m cursing, I’m, “Take it back, I don’t want it.” And I would just be pounding and pounding the bed until I was just exhausted.
And this happened for a couple weeks. But it didn’t happen every day, but it would come. And after a while, I realized it was fear. It was fear that was driving this. And I remember saying, “Most of my life, I’ve been a very fearful person. I’ve been afraid of a lot of things…”
Jamie DePolo: Just in general.
Michael Kovarik: In general. And I remember, at one point after one of the episodes -- where I was just totally exhausted from pounding the bed and crying and just screaming out -- that I just heard myself say, “I don’t want to be afraid anymore. This is not how I want to live whatever time I have left. I don’t want to be afraid.” Yet, there’s so little out there about metastatic breast cancer or any kind of metastatic cancer, that fear is just going to take over. And so it’s getting to that place and finding, and stating to yourself, “I don’t want to be afraid anymore.” And realizing the support you have -- realizing what’s around you, realizing what could possibly come of that. And I had fantastic doctors. I had fantastic friends and family that were around me. And I remember thinking how lucky and how grateful I am for that, because there are people that don’t have that. And I don’t know how you go through -- even at early-stage breast cancer -- how do you go through that on your own, you know?
And so that was there and it still pops up. There are those moments that I’m not as perky as people think all the time. I’m not Mr. Positive. Poor Tim -- especially as I’m dealing with hormonal therapy, I think -- Tim is, I think at times, like, “Okay, which Michael am I dealing with here?” And the littlest thing could set me off. But the thing is, I kind of just sit with it, and I don’t try to fight it, and I just accept it. And then I say, “Okay, you know what? I don’t want to stay in this dark place. I don’t want to stay in this angry place. What can I do?”
And I think that was also what propelled me to look beyond the Male Breast Cancer Coalition that I was doing advocacy work for. And I learned about the MBC Alliance -- being a representative on the Alliance -- and then connecting with people with METAvivor. And that sense of community has really helped me -- and continues to help me -- deal with the times that I feel like, “Oh God, I don’t want to do this path. I don’t want to be on this path, I don’t want this disease.”
And then I kind of get back to thinking, “But look what you’re doing.” I’m now doing a whole other level of teaching, and I’m realizing that that’s the path, that’s why I left teaching early. Because that was the path that was going to be unfolding for me.
Jamie DePolo: And you’re dispelling fear because if -- and this is just my opinion -- but, that’s such a big part of a metastatic diagnosis, is because nobody does want to talk about it because it is so scary. So, if you don’t talk about it, that almost makes it worse. It’s like this scary thing in your closet, when you’re a kid -- because you never talk about it and you never see it, and it just gets bigger and bigger and bigger.
Michael Kovarik: Yes, and it does until it’s the whole closet. And that’s the thing. And I think that’s why, as I’ve gotten more involved -- especially with METAvivor -- is I’ve learned more and more about metastatic breast cancer. And I’m meeting more and more people -- 99% of the population is women. And I’m meeting these young women who are being diagnosed in their 20s and their 30s, and I’m thinking, “It’s 2018, how is this happening?” These are individuals with young children. And, it’s -- not to disregard or diminish my own path with this, or any single man or any single woman going through this -- but, I look at these women who have children, who are sitting there saying, “I don’t even know if I’ll see them graduate from kindergarten.” And I’m like, “Oh my gosh. How do you… how do you do it?”
But it’s the sense of community. As we were talking earlier -- this is an amazing, amazing community, the people who make this up. It stinks that the reason why you’re in this community -- either whether you’re living with it or a caregiver or a partner of someone living with this disease -- but it’s the people that I’m meeting. As I’ve grown out of this fear -- it’s there, but now it’s in the passenger seat, it’s not in the driver’s seat, which is so important. But, it’s there. And when that fear comes, I hold onto the people that I know are around me. But I also hold onto these amazing, amazing women and men that I have met that are going through this journey, and that helps.
When I started advocating, there was that part of me that was afraid to do it,. There was that part of me, because it was like, “But, these people are going to die. These people are going to be leaving sooner than most people do, because of our diagnosis.” And yet I still put myself out there. I was at the Stage IV Stampede that METAvivor does, where they meet and they call people to come to Washington, DC for the Stage IV Stampede. They do a march, then they do a die-in to represent the 113 women and men that die each day from this disease. And then we go into the Senate building, and they organize us into teams by states or combination of states, and we go talk to our representatives in Congress and the senators.
And I did that last year, and I got such a sense of community from that. And I remember going up to Beth Fairchild, who’s the president of METAvivor, when I saw her afterwards. And I said, “I want to become more a part of METAvivor, because this is amazing, this was so empowering.” And it was like, “Okay, this is the path I need to go down.”
Jamie DePolo: It felt right.
Michael Kovarik: Yes. It was that click, you know. And so it was this past December that Beth called me, and asked if I would be willing to be on the Board of METAvivor, which I was like, “Oh, my God, I would love to.” And so, that’s where it started, and I’ve been learning even more, and becoming even more. But I was talking with Beth about that, because I was sharing with her about how I was reluctant to get into that advocacy at first and why. And she said, “Michael, but something tells me, thank God we met these people, and thank God they affect us. We have that hurt when they go, when they pass -- because we allowed them in, we allowed to feel, we allowed to connect with them.” And that’s what makes surviving this -- living with this disease -- so much more doable, because you’ve got this amazing family.
But each time someone passes there’s that death-fear again. It’s like, “Oh, my God, this could be me.” And then you can either stay in that fear or you can sit there and say, “What can I do so that we don’t lose more of us?”
Jamie DePolo: Yeah, that there’s one less.
Michael Kovarik: Yes. Yes. That there’s one less. Yeah.
Jamie DePolo: So, here is a question: Now, you’re a gay man diagnosed with metastatic breast cancer. You’re a minority among minorities.
Michael Kovarik: Why not, you know? Makes life interesting.
Jamie DePolo: Well, sure. Was it hard for you? I mean -- you are such an advocate and you talked about your hesitation -- but was it hard to kind of put yourself out there? You’re an advocate, you were also in the Story Half Told. I mean, that was a very intimate portrait of both you and Tim. Did either of you have any hesitation, like, “Do we really want to share everything?”
Michael Kovarik: You know, it’s funny, I think at the time, it didn’t. I was retired from teaching -- and I don’t think it would have been different if I was still teaching. Because, I think, by near the end of my career, most people knew that I was gay. And my colleagues would love it when Tim and I would come and do things with them and stuff. And it never was a problem with my doctors, because I came out to my GP when I moved to Albany, and all of my doctors knew. I mean, I was not going to hide it from them. And I knew enough that if there was a problem, I wasn’t going to stay with that doctor.
But, for most of my life I was terrified of anybody knowing that I was gay. I was born in the ‘50s, I grew up in the ‘60s and the ‘70s. As I’m coming out, it was during the AIDS crisis. And I knew enough that I was not going to be totally honest with people about who I was. And I think that was one of the things that came out of, especially with stage IV -- and I shared it when I was with the second diagnosis, when I became part of the Male Breast Cancer Coalition, it’s in my story, about my partner Tim -- and so I started bringing down that wall. It was amazing how many walls I had built up around myself.
Jamie DePolo: You don’t realize it.
Michael Kovarik: Yeah, it’s like, “Oh, my God,” you know? And I think especially at stage IV, it was this different sense that came over me. Because I remember a time I got a phone call from Laurie Marks Rupinder, out of LA -- she has since passed from metastatic. But she was doing a lot of advocacy work with Dr. Susan Love out there. And they were starting this advocacy thing of Collateral Damage for metastatic breast cancer. And Laurie was someone who was like, “You need to have men on this.” And she had contacted Laurie Berlin of the Coalition, and Laurie gave her my name.
And so Laurie was talking to me, and I remember talking with them thinking, “Wow, I’ve never been to LA. Wow, Tim and I maybe could get out to LA.” And I’m thinking, “Oh God, I have to get on a plane.” I had not been on a plane in like 11, 12 years, because I was terrified of flying. But what was interesting was after the call -- and I was sharing with Tim about the call, because she was going to put my name in -- and I was like, “We might be able to get out to LA.” And I went, “Oh, my God, I have to get on a plane.” I’m thinking, “Michael, you’re stage IV. Why…”
Jamie DePolo: Kind of puts that in perspective.
Michael Kovarik: Yes, it’s like, “And you’re terrified of getting on a plane?” And it was that realization of, again, “I don’t want to be afraid.” Fear was showing its face again, an old fear. And I was like, “No.” And so, I did it and -- especially since I’ve been with METAvivor -- I’ve been traveling all over, where my friends were going, “My God, look at you. You wouldn’t get on a plane and now every time we see you on Facebook or something, you’re someplace else.”
But it was that sort of thing, and I’ve been very, very open about being gay. I’ve been very open, because I’m also at that point where I don’t have patience for people that have to judge me by that. If you’re not going to take the time to get to know me, you're not somebody... And that’s also one of the things from stage IV, I think, also. It was like, “I don’t have time for people that need to do that. And, if you’re going to have a problem with it, okay. That’s your issue. I need to live my truth, because all my life I was too afraid to do that.” And I think because of that, it allows me to be more vulnerable, more open.
You know, with the Story Half Told -- which was an amazing experience -- because of the people that were filming us and photographing us, it was like they were family to both Tim and I. And we just -- I was open, and I was like, “I need to speak my truth. I need to live my truth, because that’s the only way this is going to move forward.” And so I’ve been very, very fortunate that it’s never been an issue with any of my doctors about being gay and having Tim there. And yet I’m sure, unfortunately, there are people that do have that issue.
Jamie DePolo: Right, or they haven’t overcome the fear yet.
Michael Kovarik: They haven’t overcome the fear or they’re stuck in a part of the country -- or live in a part of the country, I shouldn’t say “stuck” -- live in a part of the country where access to a cancer center, it’s just not doable. So, there’s so many factors that play into it. But, I think for me, and what I had hoped would come out -- especially in the Story Half Told -- was that I was revealing all of me.
Jamie DePolo: I think that definitely comes out, and I think that -- I mean, all the stories are so touching, amazing, they made me feel a lot. But there was something about yours that just… you talk about how you felt like an instant connection with Dr. Winer? I kind of felt that with you and Tim, and I had never met you. And I think it was because you can just tell from the videos and the photos, that you are both being so open and that you’re not trying to hide anything. It’s just, “This is who we are, and this is how we are living with this disease.” And it was very -- I say this, and I don’t mean it facetiously -- it was very hopeful. It made me very hopeful when I watched it.
Michael Kovarik: Well, thank you. And it was, the people that were there were so loving and so concerned and so connecting -- every single person that was there. I think one of the sweetest things about that story was there was this young woman, Jen, who was working with videographer. And as they were packing up that Friday, because it was their last day of videotaping, she was in our dining room -- Tim and I, I think we were sitting in the living room, like, “Whew,” you know. We were kind of sad to see it end, but like, “Wow…”
Jamie DePolo: Emotionally draining, I’m sure.
Michael Kovarik: Yeah, and Jen stood there in the dining room, and she was like, “Michael and Tim,” and she started crying. And she was like, “Is there a memento I could have from you to remember you by?” And I remember sitting there, and I was like, “Oh my gosh, Jen, that is so beautiful.” And so Tim and I were talking, and I’m like, “I don’t know, what can we give, what can we give her?” And Tim was like, “Well, you have that plant upstairs that you just repotted -- a jade plant.” So I was like, “Jen, do you love plants?” She goes, “Oh, my God, I love plants.”
So, I brought the jade plant down, and we were packing it, and she just started sobbing, hugged us both, and walked out. And Matt, the videographer, came up to both Tim and I, and he goes, “You guys will never know how much that meant to her. She grew up in the Bronx, and it wasn’t a really good upbringing. And when people like you guys give a piece of you to her, it means so much.” And I was like, “What a perfect way for this to end,” because I felt they were giving to Tim and me by allowing us this venue to share our story and to get the word out there about metastatic breast cancer -- but also that men get metastatic breast cancer. And so it’s just been absolutely, absolutely amazing.
Jamie DePolo: Well, so, speaking of traveling, I have to ask you about this RV trip that you are going on! So tell us a little bit about that.
Michael Kovarik: Yes, METAvivor -- through these wonderful grants from pharmaceutical organizations and other organizations -- has an RV that they go coast-to-coast with each year.
Jamie DePolo: Now, is it painted? I mean, it’s clearly marked as…
Michael Kovarik: On the outside it will say “METAvivor,” it will also say each of the organizations that have donated money for this.
Jamie DePolo: So there’s no mistaking it when it rolls through your town.
Michael Kovarik: Yes. Yeah, doesn’t say "rented by." So what they try to do, the purpose of this, is to raise awareness of metastatic breast cancer. And it’s called the Sea To Sea Campaign for MBC. And it’s this RV, and they usually try to have two patients -- or a patient and a caregiver -- that drive it across different segments of the country. And along the way we may stop in at cancer centers and talk about patient needs. We'll meet -- or might meet up with -- a group of people that are associated with METAvivor, that give to METAvivor, and meet up with them.
Jamie DePolo: Do you have them for dinner in the RV? How does that work?
Michael Kovarik: You know, I’m not really sure how they, what they do. This is our first time, and this kind of happened so fast. But I don’t know, if it’s a big crowd, if the RV could handle it. But also they stop at the pharmaceutical companies -- their offices that have given the grants for this. I think there’s materials that we can give out to people about metastatic breast cancer. And, hopefully, hooking up with the news media to help spread the word. I know in Seattle, we’ll be going to Seattle Genetics, because they’re a very big sponsor of this. And Cascadian, which used to be a separate entity from Seattle Genetics but is now part of them. Last year, the people at Cascadian apparently had a map of the United States and pins, and they followed the RV as it was going, which was amazing.
And it’s a way for people to start that conversation. People are more likely to come up and say, “Okay, what’s this all about?”
Jamie DePolo: Yeah, “What is metastatic?”
Michael Kovarik: Yeah, and I think especially it’s, “Okay, why are you a guy,” right, “This van?” “Well, let me tell you about that!” But it’s great. And so Tim and I -- the van has gone cross country now, it’s now in Seattle -- and they have different people in different places doing things. And they were also following our vice president, Pam King, who has since just recently passed away from metastatic breast cancer. But she always did this thing, Drive 4 Stage IV. And it was old cars driving a race across the country, and they were raising money. And I think at the last report that we had, it was over $60,000 was raised from this race. And in the midst of it, she wasn’t feeling well, went back home to Rhode Island, went into the hospital, and just went downhill, went from there. And within I think a week was gone.
And it’s such a great loss with her because, one, being the vice president, she was also part of -- a big organizer of -- the Stage IV Stampede that I’m now kind of filling in her shoes, somewhat… trying to. So, the RV was following this race also, and meeting up with them at certain points to help bring more awareness. I got a call from CJ, who was one of the founding members of METAvivor -- actually, the only remaining founding member of the four women that had founded METAvivor in 2009, when METAvivor started. And she was like, “Michael, we need some drivers.” And she was naming off different sections -- like Washington/Oregon, Southern California, and then, I think, they end up with New Mexico to Arizona, I think, is the last leg of it -- and I was sitting there thinking, “Oh, my God, I’ve always wanted to go to the Northwest.” So, I’m like, “What a wonderful way to do it.”
So, I’m not… Everything is just kind of quick, because it was like a last minute decision, that we were able to do it this month. And so, Tim and I are going to fly out to Seattle, and we’re hoping -- what I would love to do -- is kind of like a little video blog that we send out so people can see, and we’d love to share it with you…
Jamie DePolo: Yes, we would love to host that, publish that -- so, if you’re listening, stay tuned for that, because we would love to share these adventures.
Michael Kovarik: I’m so thrilled about that, because we’ll also share it with METAvivor -- but the more other organizations we can share it to get the word out. Because, I think part of the conversation is, what we talked about before: 30% of women and men in an early stage will progress to metastatic. And that discussion may be starting to happen, hopefully, in some doctor offices. But,for the most part, my experience is, it’s not. And so that’s one of the things we’re also hoping. And also, for me, it’s an opportunity to be a visual of a man living with metastatic breast cancer.
I recently just spoke in Tampa at METAvivor and the Metastasis Research Society’s Engagement Conference, which was all about research that’s going on about metastatic. And I spoke about male breast cancer briefly. And the gist of my talk was that we start including the word “men” in our breast cancer vocabulary. Because so many men, a lot of the times, are diagnosed stage IV -- or progress to stage IV very quickly -- because they’re diagnosed so late, because they still don’t realize that men get breast cancer.
So, I think it’s a fantastic opportunity to get the word out about breast cancer, to get the word out about metastatic breast cancer, to start conversations about that. And I’m hoping that there are people -- like, when we stop somewhere -- that there are people going to be coming up and looking at the outside of the RV and the logos and everything that are on the wrappings around it -- you know, “Okay, what’s this all about?” And having that conversation. Because one of the things I shared, when I was talking at the Engagement Conference was, we have to realize that the conversations in our homes are not just with our daughters or our wives or our sisters, it’s with our sons also, our husbands, our partners, our uncles, our grandfathers, our grandmothers. That conversation now encompasses everyone, and so our vocabulary needs to encompass that.
And it’s going to take a while for that, because for so long it’s been designated as a woman’s disease.
Jamie DePolo: Yeah. Well, and it’s hard. And we talked about the research just a little bit, but if you only have -- if 1% of the people who are diagnosed with breast cancer are men, it’s very hard to even get a quantity to do a study on. That’s why it’s got to be very hard to be an oncologist because you don’t have these big studies to say, “Oh, well, this is obviously the next treatment.”
Michael Kovarik: Yeah -- there is one study, but it has to be international. It’s in partnership with oncologists in Europe. And Dr. Sharon Giordano at MD Anderson in Houston is the American lead for that. But, yeah, and it was because they didn’t have enough population here to do a study. And I think they’re in phase II of that study. And so I think hopefully things will be coming out. But what was also -- which is starting to change -- but what was also is a drawback was that men were excluded from a lot of the clinical trials that were there. Which, when I was hearing, I kept thinking, “Well, but you’re telling me the only treatment you have for me is what is out there for women. So why am I excluded?” But that is also starting to change.
I think this year Dr. Giordano recently wrote an article -- and I forget for which magazine, but a friend just sent it to me -- and she was saying this year, in 2018, they’re expecting a little over 2,500 men will be diagnosed. Over 500 will die of this. And sowe’re starting to get more out there, we’re starting to become more part of the vocabulary -- which is great.
But there’s so much more that has to be done. But as we talked about each organization, what they’re doing -- what Breastcancer.org is doing, what METAvivor is doing, what the MBC Alliance is doing -- each of them bringing us closer to getting a cure, to finding out why and how breast cancer spreads. Because metastatic breast cancer is the breast cancer that kills, yet less than 7% of all funding goes towards [metastatic] breast cancer research.
So, I think, hopefully part of that conversation is not only going to be recognizing that men are part of this, but also that we need to up the research funding for metastatic. If 30% are likely going to progress, then we need to be having at least 30% of funds going towards metastatic breast cancer.
Jamie DePolo: Michael, thank you so much.
Michael Kovarik: Oh, my God, Jamie, this has been…