You Don’t Know How Strong You Are Until Being Strong is the Only Choice You Have

You Don’t Know How Strong You Are Until Being Strong is the Only Choice You Have 

April 29, 2023

Presenter: Justin Regan, RN, Survivor of two stem cell transplants

Presentation is 20 minutes long, followed by 15 minutes of Q&A

Summary: After being diagnosed with myelodysplastic syndrome, nurse Justin Regan underwent two stem cell transplants using cells from a donor.  He recounts his experience and shares what inspired him to continue on through treatment, despite the difficulties.

Highlights:

• Hearing the words “You have cancer” is like a movie scene where a bomb goes off, the debris is flying everywhere, everything is muffled. People are shaking their heads just trying to regain their equilibrium.
• At the forefront of anyone's cancer journey are the physical debilitating side effects, but there is so much more going on mentally and emotionally. It’s what Justin calls collateral damage.
• Caregivers are the unsung heroes of anybody's cancer journey, often thrust to the background. They are essential to each patient’s recovery.

Transcript of Presentation:

(00:01): [Marla O’Keefe]: Hello, and welcome to the opening session of the 2023 Celebrating a Second Chance at Life Survivorship Symposium. My name is Marla O’Keefe, and I am the Director of Outreach for BMT InfoNet.

I'm delighted to introduce to you our keynote speaker, Mr. Justin Regan. Mr. Regan has worked as a radiation oncology nurse since 2012 and has prepared many patients for transplant. It never occurred to him that, one day, he would be facing a transplant himself after being diagnosed with leukemia.

He has prepared a presentation for us entitled You Don't Know How Strong You Are Until Being Strong Is the Only Choice You Have. Please join me in welcoming Mr. Regan.

(00:56): [Justin Regan ]: “You don't know how strong you are until being strong is the only choice you have," Bob Marley. I'm going to leave that one hanging out there for a little bit. My name is Justin Regan, and I want to thank you all for allowing me to share my cancer journey with you.

(01:12): A little background. I am married to a wonderful woman, Val. And we have two amazing sons, Tristan 25 and Ian 24. I was 59 and healthy as a horse. I was well into my career as an oncology nurse when I was diagnosed with high-risk myelodysplastic syndrome, MDS, in July of 2020.

(01:32): Now, they say to avoid negative topics when you're speaking, well, this is a story about cancer, but with a positive spin because I am a survivor. I know that I'm not technically a survivor until the five-year mark, but as a close friend who said to me upon learning of her diagnosis, "I considered myself a survivor from the moment I heard those dreadful words, 'You have cancer.' I think it's important to embrace this from the beginning as it stokes the flames for the fight against this insidious disease.

(02:04): The beginning. It was a beautiful spring morning, early June, and I was setting out to run in my hospital's annual 5K run to support, ironically, the cancer service line. I'd been running this race for about nine years now. And a very good friend of mine joined me for the last four years, and it soon became a tradition to race and then go out for some flapjacks.

This was our intention that day. We started out jogging, and I had barely run 50 yards when I had to stop and catch my breath. I resumed running after a bit, but the same thing happened, and this continued throughout the first half of the course. I was so exhausted at this point that I just decided to walk the last half and go have our flapjacks.

Now, I'm not a runner by nature, but I can usually knock out a 5K. I thought I was just wickedly out of shape, so I went out again, jogging near my house. Same thing happened. Totally gassed, legs burning. I felt miserable.

(03:01): Over the course of the next month, I was becoming increasingly fatigued to the point that I described it as obliterating, and there was just this persistent underlying nausea as well. I was in bed every night by 7:30 while continuing to work as a radiation oncology nurse.

It was a tough summer. It was very, very hot, and COVID was in full pandemic mode. Now, being a guy, and I don't mean to lump us all together, but let's face it, guys, we can be idiots when it comes to managing our own health. "I'm fine". Progressively feeling worse, I thought maybe it was COVID. I had two tests, and they both came back negative and that's when the nurse part of me kicked in, and I started to worry a little bit.

In my experience in oncology, I had taken care of plenty of leukemia patients, and I would ask what brought them in. And to a person, each of them said that they could barely make it up a set of stairs without being completely gassed. That was me.

(04:00): I met with my PCP. I described my symptoms and he started working me up for cardiac-related conditions and I just half jokingly said, "Hey, doc. I'm an oncology nurse. I think I've got leukemia." He's like, "Whoa, whoa, whoa. Time out, pal. We don't need to go there, okay?" I'm just saying. Had my labs drawn, and I went home.

At about 9:30 that night, I received this frantic call from the crisis center telling me to get to the ER ASAP because all of my blood counts were just really, really low. She was trying to describe a condition called pancytopenia. It's a condition where the white blood cells, red blood cells, and platelets are severely deficient.

And I was like shaking my head, trying to just get the cobwebs out because I was in a deep sleep. I'm like, "No, no, no, no, no. I know what pancytopenia is, but what?" I knew what this meant, and this dreadful fear just overwhelmed me.

(05:00): As my son was driving me to the ER, I just told him point-blank, "Listen, dude, this may not turn out well." Blasts or cancer cells were found in my blood and leading to the suspicion of MDS leukemia. A bone marrow biopsy was done and it was confirmed, and then I was the one that heard those dreadful words that, 'You have cancer.'

Now, the best way that I can describe hearing those words is like this. You know those movie scenes where a bomb goes off, the debris is flying everywhere, everything is muffled. People are shaking their heads just trying to regain their equilibrium. That's kind of what it's like. Eventually, you come through, and then an overwhelming sense of melancholy washes over you like a tsunami.

There was no emotion, just shock, as I sat in my recliner listening to tunes, staring out the window of my hospital room. My life had changed just like that. Now, I remember thinking, 'Man, did I do enough to provide for my family?' And I'm wildly doing the math in my head and I'm thinking, Okay. Okay. I think they're going to be fine.' And then I just thanked God for laying this burden on me rather than Val or the boys.

(06:13): And so, it began, transplant. I was admitted December 3rd, 2020 to begin the transplant process. I set my room up with family photos, a Christmas tree, and a Notre Dame banner that read Play Like A Champion Today, which I would tap every morning upon waking up. I brought all of my favorite movies, made sure my playlists were ready to go on my phone, books, crossword puzzles, and I was ready to settle in for my long winter's nap.

There was a five-day conditioning course of chemo to basically obliterate my compromised marrow. Then, transplant day was December 9th, otherwise known as my second birthday.

(06:54): Now, prior to breaking the seal of the bag [of stem cells] and hooking my line up, my nurse asked me if I wanted to hold the bag, and I'm like, "Well, can I ..." As soon as I held it, I lost it, uncontrollable sobbing. I was literally holding life in the palm of my hands, thanks to an incredibly unselfish 29-year-old gentleman, a saint.

Now, the really cool thing here is that once it's hooked up, you can actually see the clumps of cells just flying into your body. It reminded me of one of those epic battle movies that you see, thousands of soldiers just rushing in to save the day. The entire transplant clocked in at 47 minutes. No Issues developed, and it was happy birthday to me.

(07:43): It was time to settle in and let the new marrow take hold. As the days passed, graft versus host, GVHD, rears its ugly head. Now, can my body play nice with the new marrow? Mine couldn't. It hit my skin. My torso looked like I was wearing a purple tie-dyed shirt. And oh, it itched. And it hit my gut and liver as well with a vengeance.

(08:08): I won't go into detail, but I will go on record as saying that mucositis has to be the worst side effect ever. Copious amounts of mucus production. I had to have suction hooked up just to get rid of it. Sores developed under my tongue, down my throat. I could barely swallow. These were some pretty dark and miserable days.

Now, remind you, this was all happening at the height of COVID. No visitors allowed, not even Val or the boys. FaceTime is great, but the lack of any physical presence with a loved one takes its toll. Thank God for such a cool staff patiently listening to all my stories, and I've got a lot of stories.

(08:48):  I was finally discharged 28 days later, New Year's Eve, 2020. By now, I'm bald and so, so skinny. My son picked me up, and I may have given him the biggest bear hug known to man. I walked through the door of our house, Val greets me and immediately says, "Wow, you look just like Squidward from SpongeBob SquarePants." And I'm like, "Well, thanks, baby. I missed you too," and big hug. And we just laughed, and I was so happy to be home.

(09:17): Recovery. Home and ready to heal to start 2021, I was so deconditioned. I was working hard on trying to get some exercise and eat more. I would walk when I could, do some squats and some pushups. I could barely knock out three. Picture Steve Rogers before he becomes Captain America, scrawny and struggling. It was pitiful, but I was alive.

Weekly visits to my team at the Colorado Blood Cancer Institute here in Denver, CBCI, continued along with monthly bone marrow biopsies. Now, for those of you not familiar with these, let's just say it involves a drill and a boring needle about the size of your average stir stick going right into your tailbone.

(10:04): I was getting stronger, and I was feeling pretty good, and then relapse. You do all of this miserably hard work only to find out that it failed. I felt as defeated as I ever had in my entire life. I was angry at God, at the world, at everything.

(10:27): Before I knew it, I was back in my chemo recliner. And this, time they were supplementing the IV chemo with oral chemo in hopes of achieving remission again. It too had failed, and discussions of a second transplant just rocked our world. I did not want to go through that again. One trip to hell was enough.

(10:47): My heart and my brain were all over the place. I didn't know if I had it in me to venture back there. And that's when I happened across the quote that I opened with by Bob Marley, and it just resonated. There was no way I was going to give up. I was not going to let this thing take me down.

I set up a boxing bag in my garage. I found an old T-shirt. And with a black marker, I wrote the word cancer on it, and I slipped it over the bag and I just attacked it with whatever strength I could muster. My mantra became ‘keep calm and fight on’. I totally ripped this one off from the British here.

I just kept digging and digging deeper and deeper into whatever wells of strength that I had. So let me say it again. You don't know how strong you are until being strong is the only choice you have. You will find your strength.

(11:38): I was inspired by one of my all-time favorite movie scenes. It's from Lord of the Rings, the Two Towers. Frodo is ready to give up the quest in Mordor. And Samwise reminisces about stories of old, about how the folk had plenty of chances to turn back and give up. Sam says, "How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come, and when the sun shines, it will shine out all the clearer."

Folk in those stories had lots of chances of turning back, only they didn't. They kept going because they were holding onto something that there's good in this world, and it's worth fighting for. I know what my good is, my family. And in them, I found my strength.

(12:28): Transplant part two. Back to the hospital I go, June 24th, 2021. Same drill, conditioning chemo. They blow out the bad marrow. Transplant on June 29th, my second, second birthday. This time around my saintly donor was a 22-year-old gentleman. I don't know. The wherewithal to have that level of compassion and the willingness to be a part of something to save another human being at such a young age is truly amazing. The depth of our gratitude for both these guys knows no bounds.

I suffered a few different side effects this time around, but I endured mostly the same hell. GVH hit the gut hard again, and the pounds were just melting away. It got my eyes pretty bad this time too. I was stable enough to be discharged home after a 21-day stay, deconditioned but not broken. I was ready to start the recovery process all over again.

Weekly checkups and monthly bone marrow biopsies ensued. Waiting for the results was excruciating. A level of PTSD had settled in. Days and weeks and months had passed by with no hint of relapse. And with the help of some much-needed therapy, I was finally able to find some relief and breathe.

(13:47): At the forefront of anyone's cancer journey are the physical debilitating side effects, but there is so much more going on mentally and emotionally. This is what I call collateral damage. It's all the other stuff associated with cancer. Now, whenever I meet a fellow cancer patient, I'll say, "Man, it is like we learned the secret handshake to a club we never wanted to join."

I had to step away from my job as an oncology nurse in radiation therapy due to my cancer. I was devastated. I had to give up a job that I absolutely loved. It was the perfect fit for me. I would see my patients daily as they came through for their treatments. We would talk, mostly share stories of our lives rather than cancer. It was an opportunity to get to know the person behind the cancer which I value highly as a nurse.

I completely lost my professional identity, and I felt alone and insignificant. I felt like a fraud. People kept calling me a warrior, courageous and brave, which, don't get me wrong, I loved hearing, but I felt none of that. What I felt was weak, scared, overwhelmed, a coward. Then, there's the PTSD that I had mentioned earlier. Relapsing brings it to a whole new level. It's like a predator that stalks you. Even after a lengthy remission, my brain could not settle, reconcile with my body. I had been in fight mode for so long. I just could not embrace the exhilaration of beating my MDS.

The body image is huge. I was bald, and I lost over 30 pounds. It was overwhelming. And then, there's chemo brain. This haze envelops your brain. It's like a cross between Dory, from finding Nemo and Dug, the dog, from the movie, Up. Squirrel.

These are just a few examples of collateral damage, and it takes its toll…

(15:48) Caregivers are the unsung heroes of anybody's cancer journey, often thrust to the background. They are essential to our recovery. I am one of the lucky ones with a loving, supportive network that allowed me to lean in and emerge healthy. To all my friends and family members, You allowed me the peace of never having to walk alone.

To my care teams, angels all, navigating me through the toughest, toughest days. You all brought your unique light to my darkness. I'm so grateful to all of you.

But most of all, to Val, Tristan and Ian, my well of strength who put their lives on hold to take care of dad. Tristan took on the household and outdoor chores that I just couldn't manage. Ian was my chauffeur driving me to many, many appointments.

Now, there's a rule in our car that whoever’s driving gets to listen to their style of music. Mine is old style rock and roll and '90s grunge. His is hip hop. I didn't think I could handle it. But by the end of the first month, I'm like, "Sup. Yeah." It really wasn't that bad. I learned to appreciate it.

And lastly to Val, who vigilantly prayed by my side, held me in her arms as I was crying in despair, relentlessly pushed me to eat and exercise, to regain my strength, was constantly cleaning and sanitizing the house to keep me safe. And she kept me laughing, which is so important. These three are my heart, my good, my life.

(17:35): So, after two transplants, 13 rounds of chemo, countless blood draws and transfusions, 12 bone marrow biopsies, two central lines placed into my chest, one whole body radiation, and over two years of living in complete isolation, I'm here before you now 670 days post-second transplant and thriving.

I'm regaining my strength and my hair. I'm back to work doing what I love and do best, and that's taking care of cancer patients rather than being one. I'm able to do community theater again. I'm able to get back and socialize with friends and do some traveling. I am slowly getting back to living my most authentic life, and I am loving and appreciating every moment of it.

(18:25): Life lessons. It's been a hard-won wisdom. But there is a silver lining to be found. I have reconnected with so many friends across the span of my lifetime. It's incredible.

(18:39): Connections. I've landed a job in exactly where I'm supposed to be. I am now an oncology nurse care coordinator, guiding patients along their own cancer journeys.

(18:50): I have a much keener appreciation for life, mostly for the simple things. My faith has deepened. Facing your own mortality will do that. And now, I can hardly contain how good I feel. I can be like Buddy the elf at Christmastime.

(19:10): Now, let's look to the movies, literature, theater and music to bring some of these life lessons home.

Perseverance from Finding Nemo. When life gets you down, you know what you got to do? Just keep swimming. Just keep swimming.

Faith from the Polar Express, believe.

Living, from Tuesdays with Morrie. Live your life, making people the priority, making memories and giving of yourself.

Love from Chris Cornell's The Promise. And one promise we made, one promise that always remains, no matter the price, a promise to survive, persevere, and thrive.

And survivorship from U2's A Beautiful Day. It's a beautiful day. Don't let it slip away. It's a beautiful day.

(19:57): Other cliches along the way, as a friend of mine says, we need to keep hearing because we too often forget to live by them. Tell people you love them. Practice forgiveness. Be grateful always. Knock those things off of your bucket list. Don't sweat the small stuff. Cherish your memories. And last, but certainly not least, this gem from Winston Churchill, "Never, never, never give up."

(20:25): I have been gifted life, and I will be sure to make it my best life. My name is Justin Regan, and I am a survivor. Thank you, and God bless.

Question and Answer Session

(20:37): [Marla O’Keefe]: Wow, Justin, thank you so much for that inspiring presentation. I'm sure many of our attendees can relate to your story. We will now take some questions.

(20:57): Our first question is, Justin, you mentioned about your supportive family and your two sons, and someone is curious to know how much detail you told your boys.

(21:11): [Justin Regan ]: Oh, that's a great question. What I did is, as I mentioned in the speech, when my younger son was driving me up to the hospital after getting that frantic call, I told him right away because I know they could handle it, and I just said, "This really may not turn out well." And they just took it so well.

We're a very communicative family anyway. So, I told them right from the get-go pretty much everything that was going to happen and, as it was happening, explaining different things about what may happen and so forth. So, we had very, very lengthy and emotional conversations about what I was about to go through.

(22:07): [Marla O’Keefe]: You also mentioned your great support system. A lot of people, I think, don't know how to tell their friends what they need or what they don't need. Is there something that a friend had done for you that helped a lot or things that you might tell people not to do?

(22:27): [Justin Regan ]: Yeah. No. You know what? The biggest thing really, everyone, is you don't have to know what to say. As long as someone knows that you're there, that you're engaged, you're present, you're reaching out, just, "Hey, thinking of you today," that meant the world to me.

There are numerous examples of different things that had happened through the entire course. One that I will share with you is that some very dear friends of mine that I was in a show together with a few years ago, set up a Zoom, and we would meet weekly. And they allowed me to just get everything off my chest, vent, cry, get angry, laugh, which was really important.

So, I think just knowing that you're there for someone is the biggest thing that you could do. You don't have to say anything other than, "Hey, we love you. We're here for you. And what can we do for you?"

(23:37): [Marla O’Keefe]: Another question is your background knowledge of oncology, do you think it was helpful or hurtful or a little bit of both?

(23:50): [Justin Regan ]: A little bit of both. That's great. That's great because I do tell people that knowing the language, I got rid of that middleman kind of thing because I understood the language. I understood what was going to happen, but it also enhanced my dread because I had seen firsthand the effects of chemotherapy and so forth. So, I was like, "Oh boy. I know what I'm in for." So yeah, it increased the dread. So yeah, it was a double-edged sword there.

(24:21): [Marla O’Keefe]: Yeah. That makes perfect sense. Another question is you, you're very positive. You're a dynamic speaker. Were you always this way or did your diagnosis bring this out or-

(24:35): [Justin Regan ]: No. I can be what is called the ham sometimes. I've always been this way. And I was blessed with a sunny disposition, to be honest with you, from the get-go. So that really, really helped me along the way, just this centered positivity that I do carry with me. So, I just have a greater appreciation now for it, now that I've been through it, if that makes sense.

(25:13): [Marla O’Keefe]: It does. It does. And I will tell you that was the last question, but many people have commented on a huge thank you for sharing your story and how inspiring it was. So, thank you for that. And on behalf of BMT InfoNet and our partners, I'd like to thank Justin for his thought-provoking presentation. And thank you, the audience, for your excellent questions. We hope that you find the week of workshops helpful and inspiring. And please don't hesitate to contact BMT InfoNet if you have any questions.