**Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**
In today's episode, we had the privilege of speaking with Alan Katz, a Massachusetts resident and a survivor of Acute Myeloid Leukemia (AML). Alan's journey through his diagnosis, treatment, and life post-transplant is both inspiring and enlightening. He shares his experience of battling the disease with a robust support system, offering hope and encouragement to those facing similar challenges.
Alan's story began with unusual health symptoms that surfaced in 2019, eventually leading to an unexpected AML diagnosis in November 2020. He recounts the various medical anomalies he encountered, including mono, vitreous detachment, back issues, and a case of poison ivy, which collectively hinted at underlying health problems. This series of events culminated in an orthopedic visit, where an MRI revealed abnormalities in his bone marrow, prompting urgent cancer treatment.
The swift pace of his diagnosis and treatment left little time for Alan to process the situation. He underwent a bone marrow transplant after finding a match through The Gift of Life, a bone marrow registry associated with Be The Match. This organization played a pivotal role in his journey, especially given the unique challenges faced by individuals of Ashkenazic Jewish descent in finding compatible donors. Since then, more Jewish individuals are on the registry, but Alan is working to improve the numbers for currently underserved communities.
Alan's transplant, a significant milestone in his recovery, was celebrated as his "re-birthday". However, his battle didn't end there. He faced a relapse 97 days post-transplant, which required further intensive treatment, including chemotherapy and a donor lymphocyte infusion. This challenging period underscored the critical role of a strong support system. Alan emphasizes the importance of support from family and friends, particularly highlighting the unwavering care provided by his wife, who became his primary caregiver.
Throughout the podcast, Alan discusses the physical and mental toll of AML treatment and recovery. He speaks candidly about the daily struggles, from dealing with fatigue and following a strict medication regimen to the mental grind of enduring a long recovery process. He shares practical advice and coping mechanisms, such as living one day at a time and never giving up, which helped him navigate the journey.
Volunteering and advocacy became integral parts of Alan's life post-recovery. He engages in various activities, including mentoring AML patients, organizing fundraising events, and promoting the importance of diverse bone marrow registries. His efforts aim to inspire, educate, and support others facing similar battles.
Alan's story is not just about surviving a life-threatening illness but also about the transformative power of human resilience, community support, and the importance of giving back. His journey from diagnosis to recovery and advocacy offers valuable insights and hope to those affected by AML and other challenging health conditions.
Gift of Life Bone Marrow Registry: https://www.giftoflife.org/
Be the Match Website: https://bethematch.org/
Book: Between Two Kingdoms: A Memoir of a Life Interrupted: https://www.amazon.com/Between-Two-Kingdoms-Memoir-Interrupted/dp/B08BTMJ2RG
Other Resources:
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/
Peg: Welcome, everyone. Today, we have Alan Katz of Massachusetts with us. Alan is a survivor of AML. He will share how he transitioned home post-transplant. With a strong support system in place, Alan battled his disease and today finds many ways to keep on keeping on. You'll be inspired and energized by this wonderful survivor. Hello, Alan. Thank you so much for being with us today.
Alan: Thank you for having me on and letting me share my story. I just hope by telling my story that I can inspire others that there is life after transplant when you get home and it is a difficult road, but it is navigable, so to speak.
Peg: This is terrific. Thank you, Alan. We're going to get started with your diagnosis and a bit about your bone marrow transplant story.
Alan: Sure. I was diagnosed in November of 2020, but things started to go weird for me back in November of 2019, actually. They came down with mono, which is not usually a virus that 58-year-old men get. That was the first weird thing that happened to me. I don't know if it's related or not, but it was like the beginning of a lot of weird things that happened to me over the next year. I had an issue with one of my eyes. I had a vitreous detachment. I'm not a doctor, but whatever. That's the back lining of the eye or whatever. Then after that, I had back issues, which did go away, and then over the summer, we went away on a vacation to the Cape.
This is at the beginning of the pandemic, so we were really nervous about taking that vacation. We stayed away from everybody. We went for a bike ride on the Cape. On the way back, when we got back to the hotel, I lost my balance and I fell off the bike into poison ivy. I had a bad case of poison ivy. I was on steroids and everything. Then my stomach, I started having issues with my stomach. Because of the stomach issues, they wanted me to test my blood. It came back that I was anemic. They suggested that I go see the hematology, oncology department at my hospital for a checkup with them. At that checkup, they tested my blood again, and my blood was normal.
Peg: Really?
Alan: They basically just sent me on my way. There's nothing for us here to see, basically. My back issues got worse. I had been doing physical therapy and finally got to the point where the physical therapist said, "You should really go see an orthopedist and have an MRI done." When I went in to get the results of my MRI, the first thing that the orthopedist said was, "There's nothing wrong with your back, but when you look at the picture of your spine, the color of your bone marrow is way too dark. There's something wrong here. You need to go see an oncologist."
That was in November of 2020. I had the biopsy done one day. The results came back to me next afternoon, and they basically said, "We need to get you admitted. The easiest way to get admitted is go to your emergency room as soon as possible so that we can get you admitted and start treatment." It was like 0 to 60. It's not like, "Oh, we found a tumor. We're going to watch the tumor and go from there." This was like, "You have cancer. We're starting right now." The next thing I know is, I'm admitted and they're snaking a PICC line up my arm. There was really no time to think about it. Upon further testing, they'd figured out that I had the FLT3 mutation.
They basically told me, "Without a bone marrow transplant, I would not survive." With the transplant, I had a 50-50 chance of making it. Luckily, after one round of induction, I was able to get into remission. In the meantime, they had started searching for a match for me. Nobody in my family was a match. They told me right away, "Because you're Ashkenazic, Eastern European Jewish, genetically, you will not have a problem finding a match." In fact, that's one of the reasons why I do work for The Gift of Life. The Gift of Life is an associate bone marrow registry with Be The Match. It was started because there was a young Jewish guy that could not find a match.
Peg: Interesting.
Alan: At the time, if you were Jewish, you only had like a 20% chance of finding a donor.
Peg: Wow.
Alan: This is 30 years ago.
Peg: Which wasn't that long ago.
Alan: It's not. In the field of blood cancer, there's been a lot of advances in the last decade or so. Through grassroots, they started having events all over the country at different Jewish organizations. Eventually, they were able to find a donor. They started this organization, The Gift of Life.
Peg: Oh, that's terrific.
Alan: Today, if you are Jewish, you have an 80% chance of finding a donor, which is unbelievable. They really just flipped it.
Peg: Sure did.
Alan: 20% match to 80% match.
Peg: Yes, that's incredible.
Alan: Their mission is now complete diversity in the registry for all different ethnicities. Whatever flavor you are, they want to increase the chances for people to find matches.
Peg: Absolutely.
Alan: I went through my induction and consolidation successfully, and then moved on to transplant. My transplant was on February 10th. I always remember that date. It's my new birthday, obviously, which we celebrate every year. An interesting story on the day of my transplant is when the IV was done, the transplant nurse unhooks me and she turns to me and she goes, "Mr. Katz, happy birthday." I look at her like, "What are you talking about? My birthday's not till April." She says, "No, Mr. Katz, it's your re-birthday. It's your new birthday." For the first time in months, I smiled. I was so happy because, I realized what was happening, and I had received, this great gift, The Gift of Life.
That moment really has stuck with me since. I love telling that story. Unfortunately, my story didn't end then. Day plus 97, I actually relapsed, which was like totally out of the blue. It's like I was feeling good, going to all my appointments almost every day, getting all my treatments, and like, "I'm making progress. This is great. I can do this." Then, I go to that appointment and my doctor has this face on like, "Oh, no," one of those, oh, no faces. He said, "I'm sorry, but you relapsed. One of the first things I asked him was, "Well, what is my chances of surviving now?" It's like, no, and he told me it was only 30%.
Peg: Oh, really?
Alan: Yes. I was immediately readmitted into the hospital to undergo two rounds of chemo. They started me on a new drug in addition to that chemo, a therapy that really isn't standard. Besides two chemo drugs, they put me on Gilteritinib, which is the, I guess, second-generation drug for midostaurin, which is a FLT3 mutation inhibitor. They did that combination together. I'm actually still on the brand name is Zospata. I'm still on that drug. I don't know when I'll be off of that drug. They don't know whether that's what's keeping me from another relapse or whether my immune system, which is stronger now is doing that.
They got me back into remission. In the end, it was in July of 2021, I got a second donation from my donor, but it was not a marrow transplant. It was a DLI, a donor lymphocyte infusion that they did, which is my doctor described as a way to turbocharge the transplant. I've gotten stronger ever since and I never look back.
Peg: That's very interesting. Thank you for sharing that. Alan, I'm going to stop you for a sec so we can just, first of all, I want to applaud you for your comments about the registry and the diversity. It is so great to hear about the work of Gift of Life and to see that diversity has been extended to other ethnicities as well as the ones we've covered in the past. Terrific work there for Gift of Life and just your support in spreading that message. This season is going to be about I am home, now what? You are just the perfect person for this interview. I want to jump into the support system that I know you had. I want to hear more about your family and friends and how they jumped in when you needed them most.
Alan: Yes, it is so vital to have a support system when you're going through something like this. It's your window to the outside world because, you become so isolated when you're in the hospital going through the transplant procedure and everything. Even pre-transplant when you're in the hospital for chemotherapy, you just feel so alone. For me, it was even worse because it was in the heat of COVID. After I was admitted and was just starting my chemo, the hospitals in the Boston area all went on lockdown. No visitors. My wife couldn't even visit me. Having that support system in place is so important. For me, it starts with my wife, my caregiver.
I get all choked up when I talk about this, but I like to say that she has two full-time jobs. One, her regular job, which is an eight-hour job.
Her second job, which is a 24-hour job, was me. She took care of everything for me. I didn't worry about anything. It was all there for me. Didn't have to worry about my pills, didn't have to worry about food or getting to my appointments or whatever else. I never had to worry about any of that stuff. She provided that all for me. There's a prayer, or it's actually a song that we say on Friday night before the Sabbath meal. It's called Eshet Chayil, which translated into English is a woman of valor. That's my wife.
Peg: Aww, that's quite a compliment, and I'm sure it's very deserving. Let's talk about that first hundred days again. You said you relapsed towards the end of it. What was it like? When did you go home exactly?
Alan: I spent three weeks in the hospital post-transplant, and I was able to go home then. I gave a speech. I'll read what I wrote describing the first 100 days. If you don't mind.
Peg: Terrific.
Alan: The first 100 days post-transplant are the most important, and many patients struggle. It took me three weeks to regain enough strength to be discharged from the hospital, and I landed back in the hospital twice, once due to a virus and a second time due to an infection. The rest of the first 100 days were all the same. In the morning, I would drag myself out of bed, and my wife would drop me off at the cancer outpatient clinic for my daily treatment. I would take the elevator up to the seventh-floor clinic, open the door to the waiting room. All I would see was a room full of patients waiting to get their daily treatments and to get the results of their blood tests, hoping not to hear that their cancer had returned.
Peg: Oh, this is so true. Boy.
Alan: Yes.
Peg: That's very powerful.
Alan: Yes. It's a struggle. It's just, getting up and down the stairs. It was difficult. I want to tell a story about getting back to a support system, not just your family, but your friends, too. My friends were very important to me. one of my friends set up a phone chain, so not everybody called me at once, but these people called me on this day, and some of these people called me on another day. Just getting a phone call from somebody to know you have somebody out there. It's so important.
I made a lot of connections and become more closer with my friends and my family because of it. In fact, every Friday before the Sabbath, I text about 100 people, these are friends and family just to wish them a Shabbat shalom or a good Shabbos. I'll include a picture. This includes, I also do this for my donor, too, the same thing on Friday. a picture or if I know that they've just been on vacation, or how's your son doing at college or whatever, and I do this every week because I know how I felt. Just how it touched me when people just called to say hello.
Peg: Yes, sure.
Alan: They didn't even have to say much. I feel like the need to touch these people's lives the way they touched mine, and that's my way of doing it.
Peg: That isolation period and the loneliness, all of those phone calls absolutely helped you get through that period.
Alan: Yes, it really was difficult. Because of COVID, even when my friends came to visit, it's not as if they visit, it's like I was in my bubble, and they were standing a distance away from me and talking to me. That was so difficult. That just added to the isolation.
Peg: Yes, COVID sure did do that. We've heard that quite often. Now, let's talk about the hardest things that you had to deal with post-transplant.
Alan: Oh, yes. There were many. One that was a major issue, and still is is fatigue. Both physical and mental. Physically, it's like in the morning, just getting myself down the stairs into the kitchen so that I can eat breakfast. Forget about it. I would get to the kitchen, I would sit down, and I would stare at the refrigerator.
Peg: Oh, wow.
Alan: It's like, "How am I going to get to the refrigerator?" You know what I mean?
Peg: I can picture it.
Alan: Today, I still have fatigue. When I say that, it's like I run out of energy at the end of the day. My energy levels really go down. On my mornings, I'm good. In the afternoons, good. If I'm doing something that physically exerts me, I can tell, at the end of the day that the energy levels just aren't there. You can't imagine how difficult it is until you're going through it. It's such a long recovery. It's just not the physical, but it's that mental grind, too. The anxiety, the nervousness that comes along with knowing that this beast could just come back at any time.
Peg: Oh, yes.
Alan: No doctor is going to tell you that you're cured. They'll tell you after five years you're in a good place. You carry that with you all the time. I describe it as, for me, it's this piano that's floating over my head, and it's there all the time. Right after transplant, I was always looking up, looking up, where is it? You had that sense that it's going to fall on your head at some point. Everywhere you go, it follows you. Over time, I didn't look up, so to speak, at that piano anymore. I just looked forward.
Peg: Yes. Let's talk about the rules for living at home. Like I said earlier, this season is about getting home and, "Okay, I'm done with the transplant. I'm alive. Now what?" What were some of the main things you had to deal with at home?
Alan: Yes. When you're in the hospital, it's like you're in this cocoon. You don't have to worry about anything. You don't have to know what medications you're on or anything like that or what time to take them or whatever. Everything is taken care of for you. The day before you leave, they come in and they give you this big packet. All your medicines and all these rules to do at home. They say, "Good luck."
Peg: Be on your way.
Alan: You're on your way. You go home and it's like, there's rules for what foods you can eat. I was on a neutropenic diet, so there's all these foods I can't eat, any leftovers, everything's got to be fresh. Don't get restaurant food. Your wife can cook for you, but nothing from outside of the house.
Peg: Oh, really?
Alan: Yes. Then the pill schedule, that's a killer. I was taking when I got home at first like, 30, 40 pills a day. Eight o'clock and then at 10:00 AM and 10:00 PM. I had to take my tacrolimus, the pile of pills from the immunosuppressant alone is crazy, At noontime, at two o'clock, and at dinner time, and then at eight o'clock, and then again 10:00 PM because I had to take my tacrolimus up the same scheduled time because they were going to test my blood at the same time every day, to see how things are going. The pills, it is scary. It's a bear.
On top of that, I'm walking around, with the central line in my chest for the first six months after transplant. It's like every morning to take a shower, my wife takes out the roll of Press'n-Seal, and she wraps my chest so that it doesn't get wet.
Peg: There's a good trick.
Alan: Yes, that's a good trick because I used to use, they gave me these Aqua Shields. The only problem with the Aqua Shields is when you pulled them up, sometimes they pulled your skin off too.
Peg: Press'n Seal, that's one I haven't heard about yet. We're going to remember that one. Thank you. Let's talk about mental health for a minute, Alan. How was your mental health when you were getting acclimated back home?
Alan: As I mentioned before, the whole process is a mental grind. It's like Groundhog Day. Every day is the same. I described the 100 days. It's literally every day you're doing the same thing. You have the same schedule, you're on a schedule. It's like every day is the same. It just becomes grinding to the point where you just don't want to get out of bed and do it again that day. I'd have an early morning appointment. I was spending most of the morning in the hospital getting a transfusion or whatever I needed. Then they had to flush my lines and give me this IV and that IV. The IVs that my wife had to give me every day, the antibiotics related to pneumonia, and everything. I was getting an IV every day my wife had to do that. It's just a grind.
Peg: You did it.
Alan: Yes, exactly. I want to say that.
Peg: It was worth it, right?
Alan: Oh, absolutely. It was really difficult. It's really hard to see the light at the end of the tunnel. It's just so difficult. That's the hardest part. Just getting through the day. You've just got to be forward-looking with a positive attitude. That's really the only way to do it.
Peg: I agree. Tell me what you mean by the two guiding principles, Alan.
Alan: Yes, I love to talk about those. I realized early on when I started chemo that I was going to have to live my life a little differently. I'm not going to think about my retirement or what I'm going to be doing six months from now or the vacation that we're going to be taking next summer. There's so many questions out there for you. I felt it was important to focus on living my life one day at a time. At the beginning, that was really about making it through the day's treatment, not worrying about what I had to do tomorrow, right?
Peg: Sure.
Alan: It was just overwhelming and daunting when you thought about, just to get through that first round of chemo or even when you get home after transplant. Who can even think about what you're going to be doing three months from now? It's just impossible to focus outside of that. I focused on the day. At first, it was just getting through the day, and then it became enjoying the day. Finally now,
I live in the moment, I appreciate everything around me, I don't take anything for granted and, I'm not worried about what I have to do tomorrow or the next day. It simplifies life but I think for me it made it easier to cope with this disease by focusing, on that.
It doesn't mean that you don't think about the future, you don't have a future or anything like that. Of course not. To get through, especially like the first 100 days, for me that was one of my coping mechanisms, and my second guiding principle was very simple. Never give up.
Peg: Terrific.
Alan: You just can never give up. It's all about that positive attitude, and keep going, and doing what you have to do. Not every day is going to be a great day, but you just got to keep going.
Peg: These are terrific principles. Alan actually reached out to me about volunteering and that is how I met Alan and I was so thankful. Those are phone calls we love to get and we struck up a conversation and next thing we knew we were booking a podcast. Alan, I know that you are a volunteer extraordinaire. Share with folks why you volunteer and what you've done, some of the highlights of that.
Alan: I want to say first with this disease, which is so difficult, there are two schools and neither of them are right or wrong. After you go through something like this, it's an extreme trauma both physically and mentally. A lot of people just want to get past it and move on and not think about it, which is understandable and I understand it completely, and I thought about that too. Then I had this need to, I don't want to call it give back or pay it forward, whatever you want to use for it. For me, I just felt that this was really part of healing and being able to help people, to inspire people, to educate people, and to advocate for others about this disease.
When I was first allowed to travel, basically, a year after I had my transplant, my doctor said, Okay, it's all right to travel, but just be very careful." Again, remember, we're in the heart of the pandemic at this point and my doctor is being extremely conservative. My wife and I did a road trip, we drove all the way down to Florida and we spent a week there. On one of the days, my wife had mentioned to me that she had seen on a Facebook group, or one of the AML Facebook groups about this organization, Health Free Foundation, and they were having like you guys have the lunch and eat whatever, but they were sponsoring it.
They had a survivor that was going to be on and talking about her experience. We're driving and one of the day, I listened to the talk. After that I decided, "This is really good. I want to do some stuff like this. This is really important."
Peg: Terrific.
Alan: I got involved with them and I really pushed for one thing for them to do because it was something that I did not have, and then I had just found out about it is having a mentoring program. To mentor patients who are going through transplant. I pushed hard with them to do it, and I helped them set it up, and they have it up and running now. My way of giving back, one of them is to mentor the patients. They'll match up patients with a survivor based on their diagnosis or whatever their age. It can be anything or if they have similar hobbies, that you have something in common. You'll get matched with a patient.
I'll text the patient, "Hi, I'm Alan Katz and I've been assigned as your coach, and here's my number. Let's set up a time to talk and I'll be happy to tell you my story and answer your questions." I've been doing that now for a while, and I do that also for Be The Match. I'm involved with fundraising for the Gift of Life. I just organized a Gift of Life event at the high school that I attended and the Gift of Life was having this Steps for Life campaign that they were doing. Which is actually still going if anybody wants to donate to it, I have a fundraising page. I went in and talked to the high school kids about AML and about getting a transplant. They had another survivor come in whose match for their transplant was actually from my school.
Peg: Oh, wow.
Alan: This woman who came to talk, her match was a student who had swabbed in their senior year at our school, which is amazing. They also had a donor speak. After the event, we handed out the Gift of Life t-shirts that had the logo of Gift of Life or the Steps for Life and we all walked together. We walked across the street to the reservoir and we all walked around the reservoir and walked back to school.
Peg: Oh, that's neat. That's powerful. I did want to mention, Alan, we also have a peer support mentoring program.
Alan: Yes, and I volunteer for that too.
Peg: Terrific. It's very rewarding to connect people and the friendships that grow from that. Alan, we're going to start to wrap things up. What are some of your best pearls of wisdom that you want to share today for someone that maybe is just getting home, just getting settled in on their journey?
Alan: Sure. I have two to share with you. Not every day has to count. Some days are about just making it to the next one and that counts too.
Peg: Very true.
Alan: There are going to be setbacks along the way, two steps forward, one step back or whatever, or the reverse, but you just keep going. The other one is when I was in synagogue on Sunday because it was a Jewish holiday. This is from the Old Testament from the book of Joshua. Three words in Hebrew, Rock [foreign language] which means, may you be strengthened and persevere.
Peg: Oh, wow. That just really says it all. It's a great way for us to wrap this up. You have been an incredible participant here and speaker. As we say goodbye, is there anything else you'd like to add?
Alan: Yes. I just want to add something that I read, Suleika Jaouad, author and AML survivor, recently wrote.
Peg: Between Two Kingdoms?
Alan: Between Two Kingdoms. I want to push that book. All AML patients, you need to read this book. It's an amazing story.
Peg: It sure is.
Alan: About her struggles. She's one of the people that really inspired me to really go out there and help others. She wrote something and this fits into my one-day-at-a-time principle. She wrote this about carpe diem. The conventional wisdom here is very carpe diem, is that you should live every day as is it. It's your last. As I've written before, I've left that adage behind, not only because it has such a doomsday cast to it, but also because when we think in those terms, the focus is on what we can take from a moment from the people around us.
It's what can I wrench out of life as opposed to what can I give? Instead, my guiding principle is to meet every day as if it's my first, to welcome each new morning with the wonder and curiosity of a newborn. Rather than what I can get out of this life or what I can seize from it, I've reoriented my gaze to what feels life-giving, both to my own sense of well-being and to the other humans and creatures around me.
Peg: Oh, wow, Alan. I've read her book. We are actually doing a book club with her.
Alan: You'll have to say hello for me. I got to actually meet her and talk with her.
Peg: I am a huge reader, and I have to say that is one of the best books I've ever read. It's still with me, and I love what you said about the Carpe Diem. She is an incredible human being. Alan, this has been an incredible podcast. I am so thankful to you for sharing so much of your story. I do have one last question. Have you met your donor yet?
Alan: Oh, do you have more than a second? I can tell you the whole story.
Peg: Give us the Reader's Digest version.
Alan: It turns out that his grandfather, who's about the same age as my father, was from the same small area of Germany as my father.
Peg: Really?
Alan: We're talking about during the Holocaust. In these towns, there weren't many Jewish people. It wasn't uncommon for cousins to marry. Who knows? We were a perfect match.
Peg: Interesting.
Alan: Who knows? We are related. That was kind of wild. That just blew my mind. I see it as more than a coincidence that we were a perfect match. My father and his grandfather were in the same small area in Germany where there weren't a lot of Jewish people living. It's just a wild story.
Peg: That ended up saving your life.
Alan: Yes.
Peg: Terrific. Thank you so much again.
Alan: I just hope what I say and what we spoke about can really inspire others to keep going. It's a tough battle, but you just got to keep going with a positive mind, with a positive attitude. I'm here to say that it is possible to get through it. Unfortunately, not everybody does, but there is that light at the end of the tunnel.
Peg: Thank you, Alan. It was such a pleasure to talk to you today.
Alan: Thank you.