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George Kolasa was living his dream life as a fashion executive in New York City when in February 2022, he was diagnosed with glioblastoma – the most common form of brain cancer. In this special episode, George and his husband Justin take us on their journey as cancer patient and caregiver as it has unfolded in real time over the past year.
We see George quickly evolve from accepting his disease to raising hundreds of thousands of dollars for rare cancer research through Cycle for Survival. George finds purpose in his diagnosis by helping others and spreading his message of hope, even as he confronts reality. As George’s memory, speech and ability to walk declines, Justin leans in to the challenges of being a caregiver and also learns the importance of asking for help. As we follow George to his many tests, treatments, and checkups with neuro-oncologist Alexandra Miller and her compassionate team of nurses, we witness the special bond formed between patients and care teams at MSK and see a couple making the most of every moment together, living their life with dignity, purpose, and love.
Shortly after this podcast was completed, George passed away. We thank him and Justin for generously sharing their story to raise awareness and support for research. George was a remarkable person, whose legacy is everlasting.
Cancer Straight Talk from MSK is a podcast that brings together patients and experts, to have straightforward evidence-based conversations. Memorial Sloan Kettering’s Dr. Diane Reidy-Lagunes hosts, with a mission to educate and empower patients and their family members.
If you have questions, feedback, or topic ideas for upcoming episodes, please email us at: [email protected]
Show transcript
George:
This disease takes hold of you, and you don't realize it until you're in the thick of it. And God, I look at myself and I think, “Be strong George. You're going to make it through.” And making it through doesn't necessarily mean surviving, but it just means that I'm going to be okay.
Dr. Diane Reidy-Lagunes:
A year ago, we introduced you to George Kolasa and his husband Justin Tarquinio after George was given a diagnosis of glioblastoma, which is a rare brain cancer. This power couple had the world at their feet when suddenly, it all shattered. That’s what cancer does. It’s the great equalizer. It doesn’t discriminate between rich, poor, race, or class.
For the past year, George and Justin have invited us in to share their experiences – their hopes, challenges, and fears. They teach us about the fragility of life, resilience, the importance of support, and accepting your circumstances. And they’ve shown us a raw and real patient and caregiver experience. Today, we’re taking you on parts of that journey.
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 evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send your questions, please visit us at mskcc.org/podcast.
This is not only a story about George and Justin. This is a story many of us can relate to because it's about living day to day, hour by hour, when life throws us the unimaginable; and despite the emotional and physical exhaustion, how we can find hope, purpose and meaning in it all.
Let’s go back to June of 2022, when we first spoke with George and Justin about three months after George was diagnosed. Even facing this new reality, they had a remarkably upbeat outlook.
It's really an honor to have you both here. George, first, how are you?
George:
You know what? I am fine. No matter what happens, I'm always going to be fine. It's how I decide to think about and what my perspective is around that. 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.
Dr. Diane Reidy-Lagunes:
Justin, we always say cancer's a family disease. What is this like for you?
Justin:
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. My days are very different now. I'm a caregiver, number one. But in some moments when I'm walking down the street and I'm doing a million errands and going to get medication or going to do this or going to do that, I stop and I say to myself like, this is the moment of life that I'm in right now and I just have to accept it.
Dr. Diane Reidy-Lagunes:
But the reality is, even when you do accept a cancer diagnosis, there are moments in that storm that are really hard to weather. In George’s case, the tumor is impacting his memory, balance, ability to speak and articulate his thoughts.
We spoke again in the fall, about 6 months after George’s diagnosis. Justin is definitely feeling more of the weight of the prognosis as George’s cognitive decline has become more apparent.
Justin:
Stimulation and a lot of sensory overload is very challenging for him and it can be confusing. We live on a really busy corner and it's even difficult for me to cross the street, so I have constant worry and anxiety – sorry – that if I'm not with him or somebody's not with him, something bad will happen. And, you know, that's been our challenge. The past two weeks, we've been back to him wanting to leave unattended, and it's caused a little bit of tension for us. And I said to George, “If something happened to you on my watch, I'd never forgive myself.” I know that he understands that but forgets sometimes. He's not doing it on purpose. I just worry a lot about every little thing, not just about his recovery or being sick, but just his safety and his well-being. And I want him to be happy, but I also want him to be safe.
Dr. Diane Reidy-Lagunes:
Justin, thank you so much for sharing that because the enormity of being a caregiver and the responsibilities and sometimes the guilt that folks feel – you just articulated that so beautifully and so many of our caregivers feel exactly the same way.
Justin:
I realized I can't do everything. When we last spoke, I thought I could, but now I realize that I can't do everything and that's okay. You don't have to be able to do everything. Asking for help is not easy, but it's essential for the caregiver and the patient as well.
Dr. Diane Reidy-Lagunes:
It absolutely is.
George and Justin have also had to adjust to a new dynamic in their relationship. George was a former marketing and communication executive in the fashion industry. Now, the progression of the disease has made it challenging for him to articulate his thoughts.
George:
Just getting the words out sometimes are not always so easy. So by having him by my side, it allows me to feel really comfortable and know that he's gonna pick up where I let go. And that's what a partnership is. And this is a partnership because I don't do anything without his help, and that's what I've had to learn to do. I've had to give up my position and allow myself to be helped by others.
Justin:
I think the hard thing for you, George, is that you've always been the person that's a doer and takes care of people. And to be in the position to be taken care of, I can't imagine how that must feel. In a relationship, that dynamic shifts, the balance of power shifts and you rely on me to do everything, and that's okay.
Dr. Diane Reidy-Lagunes:
What they didn’t anticipate – and what many patients find out – is how much time you spend receiving these treatments. For George, that means sitting in waiting rooms, getting scans, and receiving chemotherapy as well as radiation.
George:
Every day I'm poked and prodded and it's funny, I’ve come to accept that that's what happens to me.
Dr. Diane Reidy-Lagunes:
And for Justin, this means being the voice for both of them at George’s appointments to keep track and convey his latest symptoms and side effects.
Justin:
The prescription he currently is on is for one milligram.
Dr. Alexandra Miller:
We can give you two instead.
Justin:
Could you please?
Dr. Alexandra Miller:
Yeah.
Dr. Diane Reidy-Lagunes:
On this day in spring 2023, we follow George as he undergoes an MRI – which is a type of scan that takes pictures of his brain – to detect any changes to his tumor.
Olga Armant:
So today you are having a brain MRI with contrast. It's going to be about 35 minutes.
Dr. Diane Reidy-Lagunes:
The chief MRI technologist is Olga Armant. She grabs some earplugs, a cushion, a blanket, and settles him on the scanner before stepping into the control room next door. Throughout the procedure, she talks to George through a speaker.
Olga Armant:
George, you're doing good. Next one is two and a half minutes.
I like to encourage the patients so that they don't feel like they're just left in the scanner all by themselves.
Okay George, you're all done. I'm going to pull you off. How are you doing?
Dr. Diane Reidy-Lagunes:
Later that day, George meets with his clinical care team.
Nurse Jessica Goggin:
Touch your nose with this finger. Touch your nose with this finger. Good. Open your eyes.
Dr. Diane Reidy-Lagunes:
Nurse practitioner Jessica Goggin conducts a cognitive exam and asks George if he knows what month and year it is.
Nurse Jessica Goggin:
Take your time. There's no one here but us.
George:
Uh, April.
Nurse Jessica Goggin:
You got it. And what's the year?
George:
Uh, ‘84.
Nurse Jessica Goggin:
What's the year?
George:
Uh, wait. Um.
Nurse Jessica Goggin:
Let me give you some choices. Is it 2020, 2023, or 2025?
George:
2025.
Nurse Jessica Goggin:
‘23. Don't age us all two more years yet George.
George:
These nurses here, they see you and they know what you're going through, and never once have I ever doubted that. I'm in the right place and they know how to make me feel better.
Nurse Jessica Goggin:
You have the best outlook.
Dr. Diane Reidy-Lagunes:
After Jessica completes the exam, George’s neuro-oncologist Dr. Alexandra Miller meets with George and shares some promising news from his latest scan.
Dr. Alexandra Miller:
I think you're doing really well. Things look pretty good on the scan. I was very encouraged.
Dr. Diane Reidy-Lagunes:
While today’s news is good, George takes a moment to reassure Dr. Miller and his care team that no matter what the future holds, he’s grateful to them.
George:
I want you to know that no matter what happens, we're doing the best we can and I know that we are. So don't ever get discouraged if you don't think that I know that, or that you might personally think that I'm frustrated, because that I've made it to today is a blessing.
Dr. Diane Reidy-Lagunes:
Soon after that appointment, I had a chance to talk with Dr. Miller separately.
Alex, how is George doing?
Dr. Alexandra Miller:
On many levels, I think George is doing really, really great. Physically, emotionally, he's handling the situation extremely well. In terms of his tumor, fortunately this is a moment where he's pretty stable and has been responding well to his treatment.
Dr. Diane Reidy-Lagunes:
There was a moment during one of George's visits where he acknowledged the uncertainty of his disease, yet he wanted to make it very clear how much he appreciated you and your team. How did that make you feel?
Dr. Alexandra Miller:
I mean, I was extremely touched by that. I feel like it's an extreme honor that these patients have entrusted me in their care and really let me into their lives and their families at such a personal moment. I really want to help them in whatever way I can, and I love doing it.
Dr. Diane Reidy-Lagunes:
Back in the exam room, the appointment ends with George giving hugs to his care team.
Nurse Jessica Goggin:
Bye George. I’m always happy to see you.
George:
It's really interesting because after you leave, you have separation anxiety. I feel safe when I'm here, and I feel like I've got my friends and people watching over me.
Justin:
Memorial Sloan Kettering has been such a gift to us, and we're deeply appreciate all the love that we've received.
Dr. Diane Reidy-Lagunes:
George, what is the hardest thing for you?
George:
I'm at loss because I can't think from one minute to the next, to the next, to the next, which is why I need additional help at certain times. And Justin has been amazing, but so have so many others. And I just try to simplify and keep things really easy. I'm literally just one foot in front of the other. Just keep it basic.
Justin:
Can I try help you answer that George, a little bit more specifically?
George:
Yeah, please. Here, let me just explain. This is a perfect example of how my head just gets muffled and I can't get out what I want to say yet I know what I want to say. And it's very hard for me as someone who is so used to always having the right thing to say.
Dr. Diane Reidy-Lagunes:
And you're not alone on that. I can't even tell you how many of my patients will tell me, “I know it. I want to say it. And it's hard sometimes to get it out.” So, like you said, sometimes it's minute by minute, hour by hour, and that's how we keep going.
Another thing that keeps George going is raising awareness about glioblastoma. In May – 15 months after he was diagnosed – George was excited to hop on a stationary bike and ride in this year’s Cycle for Survival event. Team George Kolasa raised more than $465,000 to help fund research for rare cancers.
George spoke to a crowd of his fellow riders:
George:
I am so grateful to still be here today because with my disease at one year, I have already beaten the odds. Thank you to Cycle for Survival and my incredible team of doctors and nurses at Memorial Sloan Kettering who are with me every day. I cannot thank you enough. And they work that they do, it’s incredible.
Dr. Diane Reidy-Lagunes:
But a month later, George’s mobility quickly declined due to swelling in his brain. It’s still uncertain whether that’s related to tumor growth or increased swelling from the radiation he received.
George:
We’ve got a wheelchair. Yeah, I’ve graduated to a wheelchair. I told you I would update you as we progressed, and progression is not always positive. It’s a tough one, but I’m doing it.
Dr. Diane Reidy-Lagunes:
Ahead of their next appointment, Justin and Dr. Miller shared an emotional conversation about what to expect next. While she doesn’t like to make predictions, neurological damage is hard to reverse. As he has throughout his journey, George accepted this new normal when they all met.
George:
I'm aware that I might die and I'm okay with that. If I don't, you know, I'll see how long I go for.
Dr. Alexandra Miller:
Well, you have an amazing attitude and amazing people around you supporting you. We're doing everything we can and we're going to keep doing it.
Dr. Diane Reidy-Lagunes:
Nurse Jessica gives George a warm hug before he heads out the door.
Nurse Jessica Goggin:
To help people like you, that’s why I do it.
Dr. Diane Reidy-Lagunes:
As family members come to see them in New York this summer, George and Justin are making the most of every moment they have together.
Justin:
One of the reasons why I fell in love with him is that he always sees the best in everyone and everything. And I think that's really become more apparent this past year. That spirit hasn't been diminished at all.
Dr. Diane Reidy-Lagunes:
Through all of these challenges and clinical changes, George continues to be the positive person we met a year ago. He’s never lost sight of who he is and what he represents. He reminds us that time is our most precious gift, and none of us know how much time we have.
George:
I've chosen to focus on the living and not the dying, and that's been my attitude from day one. I really believe that in the end that will serve me well. And this process has been a time to reflect and see what I can do to make it better for other people because my words are going to help them.
Dr. Diane Reidy-Lagunes:
We want to thank George and Justin for opening up their lives and for sharing their experiences with us.
And thank you to our listeners. If you want to see a video version of this episode, go to the YouTube link in our show notes.
For more information, or to send us any questions you may have, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating and reviewing it at Apple Podcasts or wherever you listen. 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 Dr. Diane Reidy-Lagunes. Onward and upward.
