Finding Hope and Acceptance in a Cancer Diagnosis: One Couple’s Advice

Dr. Diane Reidy-Lagunes:

We never know the power of our mental strength until we're tested. Cancer is that kind of test. In my practice, I have seen extraordinary strength. Sometimes people just blow me away. George Kolasa is that kind of person. We're going to meet him and his amazing husband right now.

Hello, I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center, and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have straightforward evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier, healthier lives. For more information on the topics discussed here, or to send us your questions, please visit us at mskcc.org/podcasts.

George Kolasa was a big brand marketing executive well-regarded in the business. With his successful husband, Justin Tarquinio, they live the kind of New York City life people dream and write about. But life can change on a dime. George started to realize something wasn't right. Then four months ago, he received the diagnosis: glioblastoma. Brain cancer. He did not say, "Why me?" He said, "I have been chosen," and began sharing his experience on Instagram. Husband Justin immediately mounted a battle plan, activated networks and got organized. Today, they're both here to share their experience with us. Justin and George, welcome to the show.

George Kolasa:

Thanks for having us.

Dr. Diane Reidy-Lagunes:

It's really an honor to have you both here. George, first, how are you?

George Kolasa:

I'm doing good today. I just finished treatment a few weeks ago, and every day I feel like I'm getting a bit healthier and better and, most important, independent. I'm still not back to what I was. I'm very happy at the point that I'm at today. I still say to myself, I have brain cancer. And it's still unbelievable, but you're right when you say that I was in acceptance from the moment that I heard. And I also love how you said this is about empowerment and empowering people with how they can have the strength and the fortitude and the ability to make it through life situations when all of a sudden you get knocked a shift.

Dr. Diane Reidy-Lagunes:

Can you bring us back to those early days and the early signs that you had before you did receive this terrible diagnosis?

George Kolasa:

I had a very full normal life as a New Yorker. I was an executive for 30 years in the luxury fashion world. And I had gone away with my husband and our dog and we were sailing and it was during that trip that things just went south, literally. Even my body, at a certain point. And my husband went away to go to surf camp and I decided to go back to New York because something just wasn't right. When I got back home, my left side just gave out and I woke up the next morning and I fell. And that's when I picked up the phone and I called my friends and I said, "Something's not right." I went and I got a CT, a scan, and they showed me the scan and they said, "This very large, dark mass is in your brain and we have to remove it as soon as possible, and we need to get in touch with your family." And it was at that moment that I looked and I said to the doctor, I said, "God's will not mine be done." And she's like, "What's that about?" And I said, "I have to believe that this is God's will." And I'm on this new journey. And it's been from that moment that I've stayed in this place in my head. And I've not cried about it. I've not been, "Why me?" I haven't blamed anyone. It just is what it is.

Dr. Diane Reidy-Lagunes:

You're amazing. And you know, after doing this for 15 years, this is what works for you. But patients are terrified when they get this diagnosis and not everyone has, I'm going to call it, strength. And so, can you share with us a little bit about, do you know where that strength comes from?

George Kolasa:

It comes from my heart. I know I'm going to be taken care of. I'm in AA. And I haven't been in for a very long time, but I really felt at that point in my life four years ago that I was looking for a spiritual program. I was looking for a purpose. It's really helped me through this point in my life. I am in complete acceptance of this disease and of where I'm at today, and there's no reason for me to take myself down or the rest of the world with me. I have a very full heart and I am blown away by this short period of time and how many people I've touched and how many people really care. I believe that we control what comes in and how we sort of interpret things. And I do believe that positive energy will heal me through this. This is my differentiator from anybody else.

Dr. Diane Reidy-Lagunes:

Justin, we always say cancer's a family disease. What is this like for you? I mean, if we take this back, you were in Nicaragua and you had to fly 30 hours back to be by George's side. Can you share a little bit about your journey and how it's been?

Justin Tarquinio:

Well, thank you for asking me that Diane, because at first I had a lot of guilt. I'll never forget those 30 hours and trying to get home, and everything that could have gone wrong, went wrong. We were in this remote surf camp and there was a windstorm and the wifi went off and I couldn't get on the internet to like, change a flight. I couldn't make a phone call. And then I finally made it back to New York and I went right to the hospital to see him, and it was so hard to see him in that pain, because at that point, the tumor was so large. You know, he was in a lot of fear. He was on a lot of medication and I was a little bit in disbelief. And I woke up at three or four in the morning and just thought, “Is this happening?” I felt like I was maybe having a panic attack, and at that point I just said to myself, "I can't have these emotions right now. I have a really important job to do and my job, number one, is to find the best neurosurgeon that's possible to kind of take it to the next step." I gathered his brother and sister, who I have a very close relationship with, and just said, "Guys, we have a big mission today. We need to keep George really calm and really happy and make him feel really secure, and we need to find a neurosurgeon today." And that was kind of our game plan. And from that moment, we've kind of lived in this game plan kind of moment from day to day.

Dr. Diane Reidy-Lagunes:

And you've clearly, in this moment, played the role as caregiver. Have you accepted this?

Justin Tarquinio:

Yes, I have a hundred percent accepted it. You know, it's amazing what you're capable of doing when you're doing it for love. And when you're pushed up against a wall and that wall is closing in on you, what you're capable of doing is miraculous. My days are very different now. I'm a caregiver, number one, but in some moments, I stop and I say to myself, "This is the moment of life that I'm in right now. And I just have to accept it.”

George Kolasa:

I love my husband. This is a man who has stepped up to the plate and has rallied family and friends and gone above and beyond.

Dr. Diane Reidy-Lagunes:

Yeah. George, you decided to share your experience – the good, the bad and the ugly – on Instagram. Can you share with us why?

George Kolasa:

It was more about me having an outlet. My brother walked by and he said, "Well, why don't you do a video?" And I was like, "Okay, I'll do a video." And I did this video and I posted it on Instagram, and then like, I mean, things just blew up. And I get responses about other people's situations, and where I feel I can help them is extremely rewarding for me. And that's what gives me a purpose today in my life, because I can't do a lot right now. I'm not fully recovered. I still have some issues with balance and with mind and cognitive, and I'm really excited to do this because I really feel like I found like this purpose. How do we become good role models to people in general? And not just about this disease, but about any other adversity that comes through. And that's what I'm going to hopefully explore a little bit further. What tools do you have in your toolbox to help you get through? And I'm okay and I'm here. And I might not be one day, but I'm not afraid of that. That's the other thing too. I'm really not afraid.

Dr. Diane Reidy-Lagunes:

One thing that we've talked about before is, a way to get through the journey is to decide like, how much information do you need to understand and grasp where you are in that treatment? Talk to us about how you approach that, because it's just operation overload, right? There's just so much information out there and some of our patients just take to Dr. Google and other patients are like, "Don't tell me anything."

George Kolasa:

You know, it's so interesting as you say that. I've created this arsenal of all these tools. And that is one of the most important things that I did when the two doctors said, "This is how it's going to play out." And they said, "How do you want to work together?" And I said to them, "I want to know what I need to know when I need to know it. I don't want to know anything else because I don't want to future trip." But everyone's situation is very different. I didn't look up brain cancer, the name of my brain cancer, the treatment, chemotherapy, radiation. I didn't do any of that. I have trust in MSK. Like I had to have trust in my doctors.

Dr. Diane Reidy-Lagunes:

Right. And Justin, how about you? I mean, as the sort of keeper of information and the caregiver, does that approach work for you?

Justin Tarquinio:

It works for me because it keeps him happy and it keeps George focused on what he needs to do, which is recovery. And the doctors did say, "Don't Google anything." I, of course, did Google everything because I felt like I needed to know and do the research to make informed decisions. You know, I went down the rabbit hole of Dr. Google and, you know, for a good week and a half, two weeks, I just cried nonstop or at the drop of a hat. I would just cry in the middle of the day. George, I don't think I shared that with you, but I couldn't take the same approach as George is doing because I have to be in the present moment, but also look a week out, a month out, six months out, a year out, to make a plan. I had never been in the position to be a caregiver or be so personally confronted with someone's illness. I think everyone's confrontation with illness, including mine, has been with a grandparent or a parent. George is a young, healthy, vibrant person who is full of life. I think it really hit everybody that if this could happen to him – this really rare form of cancer – it could happen to anybody.

Dr. Diane Reidy-Lagunes:

Can you talk to us about, like, you talked about how intense this must be for you as well. Do you seek an outlet? Are you aware of the importance of taking care of yourself?

Justin Tarquinio:

Yes. I have many great outlets and I have such a great network of friends who all have stepped up and who've taken interest in me to make sure that I'm okay, who make sure that I have a break and I can go out to dinner or go out and have a drink with my friend or go to the gym. But they've also rallied around George and have, you know, come to hang out with him separately. Asking for help has never been something that I'm good at. I don't know if it's being a guy or just my nature, but what I learned really early on in this is that I'm not able to manage everything on my own. And I've become very willing to ask for help, but also very specific in the help that I need, whether it's somebody to come over and cook for us, somebody to take the dog out. And we're so blessed in that respect that we have so many willing and capable friends that help us through this period.

Dr. Diane Reidy-Lagunes:

George, you have said that you found it super important to advocate for yourself in the hospital. What advice would you give to other folks in terms of making sure that they advocate for themselves?

George Kolasa:

I had had surgery and I sort of was shuttled around through the process that the hospital had set up. And I remember Justin was coming and I said to him, "When you get here, we have to meet with the doctors and the nurses, and we've gotta set up some sort of plan. Like I want to wake up early in the morning and I want to walk. I want to have coffee and I want to walk, even if I can just do one round." And they did that. And then I said to them, "I also want to go back and review the medication. You know, you're drawing blood twice a day. I'm being poked eight times a day for my sugars. I'm having all these other medications done periodically throughout the day." My body clock was so off from all of this. And they were very accommodating and we switched things up a bit. And like, seven in the morning, I was walking. They had someone with me. I walked around for a few days, and then after two or three days, I was able to walk by myself. And you know, it wasn't long before I had a few people joining me for walks in the morning. I felt normalized as much as I could within that situation. I learned a lot about what medication I'm taking and why I'm taking it, and we adjusted a few things that I felt either I needed more of or less of. But like, I don't think people understand that you do have to be an advocate for the healthcare that you're getting.

Dr. Diane Reidy-Lagunes:

Absolutely. You alluded before that you lost your dad right after this diagnosis came. Can you talk to us about your mom and her role?

George Kolasa:

Yeah. I don't know if I have fully processed losing my dad yet. I got out of the hospital on Friday and he died on Saturday morning, and I called my mom and we had this most beautiful conversation. And she said, "You know, I just lost the love of my life of 60 something years." And she said, "You know, I'm so proud of you because I'm watching your husband and you really be there for each other." She said, "You know, in life, it's easy to love someone. And it's also easy to love yourself." She said, "But what isn't as easy is to allow yourself to be loved by others." And she said, "I need you to allow people to love you right now." And my mother was so spot on to say, "This is your journey, and it's going to get rough." I question that too sometimes because I don't want to be a burden to people. That's the one thing I don't want to be, is like, "Oh God, here comes George. And he needs something." And I always say that to people, but they always say, "You would do that for us," and I would do that for anybody. I really would. You have to accept that you're not always going to be able to take care of yourself. In a split second, guys, like anything can happen. And I'm trying to make some lemonade out of all these lemons.

Dr. Diane Reidy-Lagunes:

If you could, Justin, give anyone advice, what would it be?

Justin Tarquinio:

Ask for help. Don't be afraid to ask for help. Be very specific in the help that you need. I've created this board of directors of people that I can consult with on decision-making, and they each have their specific function and they're good at certain things. I would say, do your research in terms of making sure that you're informed of the doctors that you're speaking to, that you aren't afraid to ask questions if you don't understand something. I would say, definitely keep a schedule. What's helped for us is, because so many people wanted to come see George, there's many online services that you can use to schedule appointments for people to come visit or people to do errands or tasks. We use something called Meal Train, which made it super easy for me so I didn't have to be like texting and coordinating. And we went back to the old school, big, at-a-glance calendar that we could write appointments in and kind of get a long view of what we're doing. And that really kind of helped me just create a more well-defined action plan.

Dr. Diane Reidy-Lagunes:

George, any parting message?

George Kolasa:

How do you want your story to play out? Who do you want to be going through this? And I wanted to go through it with grace and with dignity and acceptance and be inspiring to other people, and to use this as a way to help other people.

Dr. Diane Reidy-Lagunes:

Wow. You are one in a million George, and Justin, you are an amazing partner and husband. It's really been an absolute honor and pleasure to have you both on. So thank you. Thank you for sharing your journey.

Justin Tarquinio:

Thank you for having us, Diane.

George Kolasa:

Thank you guys.

Dr. Diane Reidy-Lagunes:

Thank you for listening to Cancer Straight Talk for Memorial Sloan Kettering Cancer Center. For more information, or just send us any questions you may have, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating and reviewing this podcast at Apple Podcasts or wherever you listen to your podcasts. Any products mentioned on this podcast are not official endorsements by Memorial Sloan Kettering. These episodes are for you, but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I'm Diane Reidy-Lagunes. Onward and upward.