My story starts on July 2, 2022. We were two months away from my daughter’s Bat Mitzvah, and I decided to treat myself and get a custom suit made. I went into the city with a friend of mine for a fitting, then went bar hopping the rest of the day. When I got home, my legs started to hurt like from a long day of working out. I figured it was from all the walking and the heat. As the night went on, the pain got worse and moved to my back and my abs. Something was not right. At 2:00 a.m., I drove myself to Stony Brook ER.
Since I was a diabetic, I figured I was dehydrated and needed some fluids. The pain got worse and worse. I have never felt pain like this. It was all over my body, and I was moaning in the ER waiting room. I was finally seen and put in a room. They took blood from me and gave me fluids and Tylenol. After 20 minutes, I felt great and figured I would be home soon. It was about 7:00 a.m., and my wife had joined me. When the doctor came in, he told me they found something in my blood that indicated a blood disease, and I needed to go to the critical care ER and speak with a hematologist. This was surprising since I get my blood checked every three months due to being a diabetic, and I was recently checked the past April and was totally fine. Sure enough, when we saw the hematologist, he said I have leukemia. It was like a punch in the gut. I had no history of cancer in my family.
The doctor explained that it was adult acute lymphoblastic leukemia (ALL) and can come on at any time with no notice and no direct cause. As the shock rode over me with the pits in my stomach, my doctor — Doctor Lee — explained what we needed to do. It was immediate chemotherapy to try and get the leukemia blast cells out of me and get me into remission.
She said that if I had to have cancer, this was the one to get, as it is 100% treatable and curable. The most common treatment is getting a bone marrow transplant. Dr. Lee said there was still a chance I would not need one, and the chemo could wipe out the leukemia. Trying to process this was, as you can imagine, extremely difficult. I had two daughters. Julianna was about to turn 13, and Dakota who was 9. I could not stop thinking about them and how they would have to deal with this. I lost my father when I was 16, and I was determined not to let this happen to my kids. I was going to beat this and do whatever the doctors told me to do. I just wanted to get it out of me — no matter what.
The initial hospital stay was going to be four to five weeks. I figured, after that, I could resume my life again and be done with this. I had no idea how wrong I was. As I was lying in the ER waiting for a room to open up, I started making phone calls to everyone — my work, my friends, and my family. Every time I told the story, I couldn’t believe the words that were coming out of my mouth. As I read this to you, I still can't believe it. They eventually found me a room on 19 South, which is the Bone Marrow Transplant floor. It was a single room because I would be immunocompromised. The first step was getting a PICC line put in me. This was a line that went from the inside of my upper arm to my heart. It had three lines that hung from my arm where IV fluids and medicine could be administered to me. They used a sonogram to do this and basically piped the wire through me. After this was done, the next step was a bone marrow biopsy. This was one of the worst experiences of my life. They had to extract bone marrow from me to be tested so they would know the extent of the leukemia in me. As I lay on my back, they numbed me with lidocaine. I could still feel it. It was like an old-fashioned hand drill, drilling into my back. It was so painful that I needed pain meds as well as anti-nausea medication to get through it. The result showed that my blood had over 90% leukemia blast cells. The ultimate goal was to get that reading to show no disease detected. They also found that I had a Philadelphia chromosome, which was a good thing. The docs explained that this was a genetic marker that made it easier to track and treat.
The chemo began immediately. The list of side effects was longer than my arm. it was not pleasant to hear. I had to sign a waiver understanding what they were doing. I started to tune it out each time this happened. I didn’t want to know; I just wanted to push through it and get this over with. When they administered the chemo, the nurses were in a hazmat suit, covered from head to toe, and the chemo was in a bag marked “hazardous materials” like a nuclear bomb. I couldn’t believe that this poison was supposed to cure me. I was just going to push through it. I was closely monitored. I had a heart monitor at all times, and I was basically hooked up to an IV 24-7. I was constantly checked on and asked if anything was wrong. I had to tell them everything — if I had any pain or was bleeding anywhere. The chemo got rid of the bad cells, but also killed the good cells, so my platelets and hemoglobin were wiped out as well. They took my blood every night at about 3:00 a.m., so sleep was not really possible. If my platelets or hemoglobin were low, they had to give me bags of it through the IV. I had to stay mobile and not just lie in bed all day. I had a routine. I would shower at 11:00 a.m., then do laps around the floor and sit in the chair the rest of the day. Nurses came in every two hours to check my vitals. If I had a headache or any blood anywhere, I needed to tell them. One time, I did have a headache, and they sent me to get an MRI. They had to make sure I didn’t have any bleeding in my brain. Once again, not fun. Also, with every cycle of chemo, I had to get two LPs or lumbar punctures, most commonly known as spinal taps. This was when they gave me lidocaine in my back, found a spot where my spinal cord was, used a needle and took spinal fluid out, and put chemo in. They needed to test my spinal fluid to make sure there were no blast cells there. Once again, very scary stuff to hear this. Luckily, it always tested negative. I also hoped that my hair wouldn’t fall out, but it did, so I shaved it off. I think I pulled off being bald pretty well.
When I got home from the chemo, I felt very tired. I was out of breath just walking up the stairs. I was immune-compromised, so I couldn’t see anyone. If I went somewhere, I was masked at all times and avoided any crowds. If I had a fever, I had to run to the ER immediately, as that was a sign of an infection. This happened three times during my treatment, so I spent more time in the hospital. The Bat Mitzvah was tricky. We told the docs from the beginning that we had to time it so I didn’t feel terrible, and I was able to attend. They did, and it worked out great. I kept my distance and wore a mask. We had a great time. After the weekend, I had to immediately go to the hospital for my next cycle of chemo. During this time, my mom was in bad shape. She was in a nursing home, suffering from dementia. She fell and had a contusion on her brain. Unfortunately, she passed away three days after the Bat Mitzvah. I was still in the hospital getting chemo, so I had to watch my mom's funeral on Zoom. To make matters worse, she didn’t even know about me because she had dementia, and we didn’t want to alarm her. God only gives you what you can take, so I guess God thinks I can take a lot.
I went through six rounds of chemo, 12 spinal taps, and four bone marrow biopsies. The reading got down to 0.03 % disease detected. We just couldn’t get it to absolute zero. If there were any signs of the disease, it would come back. They wanted to try immunotherapy as a last resort. I was hooked up to a pump that injected me with the immunotherapy for 30 days straight. 24-7. Unfortunately, this did not change my numbers. A bone marrow transplant was the only option. While I was in the hospital and doing one of my walks around the floor, another patient latched on to me and walked with me. He had a bone marrow transplant, and he looked like a burn victim. Apparently, he had a bad reaction to the transplant. This scared the hell out of me. So, when I heard I was getting a bone marrow transplant, that was what I thought about. The doctors assured me that this was a rare case, and they would not match me with someone who could cause this. I tried not to think about it.
Then we started the process of finding me a donor and going through all testing. I had to see a cardiologist, a pulmonologist, and even a dentist to make sure I had no infections, and my heart was strong. I passed with flying colors. They eventually found a 100% match for me. He was a 25-year-old male in the U.S.; they couldn’t give us any more info on his identity. They also had to put a Hickman line in my chest. It was like a PICC line, but it was installed directly in my chest. This was where the stem cells would be administered to me. On March 6, 2023, I had my bone marrow transplant. This was my new birthday. They gave me chemo before to wipe out my cells, then added the donor’s stem cells. I was in the hospital for another month, and they sent me home to recover.
Once again, I had to tell them if anything was wrong, and they had to watch out for graph vs. host disease. This was a possible reaction to the transplant, which could be rashes or gastro issues. I saw my transplant doctor, Dr. Schuster, every week to make sure my numbers were good and I had no issues. He always said that every day removed from the transplant with no issues was a good thing. The first milestone was 100 days, which happened to fall on my actual birthday, June 13. Usually, if something went wrong, it would happen before the 100 days. Thank God, nothing did. I started working from home on May 1, 2023. I wanted to get back to normal and be useful instead of just sitting on the couch and watching TV. They kept testing me for percentage to donor. They wanted me above 90% donor cells in my blood. They were about to ask the donor for more cells, as it was about 70% when it jumped up to 90%. And on September 15, 2023, I heard the words that I wanted to hear 14 months ago — I was in remission! Donor cells were 100%, and I had no disease detected! It was the most amazing feeling to hear those words!
My wife threw me a surprise party two weeks later, and over 100 people came. It's amazing how people stepped up and supported me and my family through this whole crisis. Having a good support system is key. I can’t thank my wife enough. She was my rock. She took care of everything at home and basically planned a Bat mitzvah on her own. I am so grateful for all my family, friends, neighbors, and co-workers who called and texted me while I was going through treatment. I lost about 50 pounds since I was diagnosed, and Dr. Schuster always tells me that no one would believe what I went through because I look so much better than before.
This is life-changing. I feel so blessed and grateful. Not many people get to say they are in remission. I can’t thank the doctors at Stony Brook enough, as well as the nurses on 19 South. They saved my life. Nurses are a different breed of people. They were so caring and attentive.
Lastly, I can’t thank my donor enough. A total stranger stepped up and saved another stranger's life. We actually met him this past February. His name is Ryan, and he lives in North Carolina. He was the nicest guy, and it was great to thank him in person. We need more people like that in the world.
Oren
acute lymphoblastic leukemia (ALL)
