My 30 Year CML Leukemia Adventure

So here we are. I’m kicking back in Florida, taking some time to tend to our down south house after the winter rental. The weather is absolutely beautiful on the West Coast of Florida at this time. Not much rain and plenty of sunshine to soak in after an awful winter up North. This trip is the longest that I’ve spent here since I can remember… Over two weeks! Anyways, May 23rd came and went. No special celebration, no special dinner or fanfare. As my wife put it,”Not one of my favorite days to remember”. To me though, the milestone is emotional and very significant. This year marked thirty years since May 23rd, 1996, the exact day that I was diagnosed with CML. Crazy to think that this is almost half of my lifetime. Dr. Terzian, if you are reading this post, I have completely surpassed the one to two years you told me that I might have to live on that sad day. Even more special is the fact that since I was taken off of Tasigna in October of 2024 because of my heart surgery, I have not relapsed and have no sign of Leukemia in my blood. No Chemo medication for nineteen months for the first time in twenty eight years has been wonderful! Am I worried? Damn right I am! Having to do bloodwork every two months is still as scary as always, especially now. That “Damn Rock”, as I have explained before, will always hang prominently above my head. Taunting my brain, as a constant reminder to what can reoccurr at any moment. Nevertheless, I remain proud and will stay strong in knowing that I am one of the longest living CML patients in the US. Especially after being diagnosed in the Pre-TKI generation of survivors.

Currently, life is good. Retirement has been great and other than a quick stop at the Orthopedic surgeon for a right hip replacement in July, all is well. Here’s to hoping that any future posts are all sunny and bright, just like here in beautiful Bradenton, Florida…. Peace.

For some time, I was contemplating the rest of my business life. With everything that I had going on, especially the possibility of my Leukemia returning and the continuing rise of gold prices. Maybe it’s the time to retire. Business was good but there were so many factors that were impeding our success in the future. I decided to sell Belaggio Jewelers. Yes, it was very emotional and I would miss my employees, vendors, generations of customers, etc. But it’s the right time.

We Sent out thousands of goodbye letters, promoted everywhere and added some friends to help us on busy days. From October through Christmas Eve, we didn’t stop! People were hugging us, crying and kissing us, bringing us gifts! It was so beautiful! One older customer we’ve known for 35 years whispered in my ear that..”You are breaking up with 10,000 women!” And the sales were tremendous! Over the Top! My staff and I will truly miss all of our customers and friends. Thank you and love you for 39 amazing years!

Belaggio Jewelers will keep going, same name, upgraded store, younger Owners and hopefully the same great service and merchandise. I have bloodwork next week again and I must say that I have zero stress and will accept my results head on. It’s all I really have to worry about now. Peace out…Love you all❤️

I was in some state of shock! I hadn’t mentioned that my Oncologists took me off Tasigna in the last October of 2024! I didn’t have time to think or worry about it but Dr. Luger attributed my heart blockages to the Tasigna! A proven drug that kills the Leukemia but causes PAD usually within 5 years! Right on the money! For 9 months, every month, I was having my blood tested. Every 30 days. At the end of June, I was still PCR negative. Free and clear of my CML! A miracle of sorts! I was finally feeling a little better and knew that the trip .might be grueling for me. It was 105 degrees in Rome and Florence everyday. Making this short…Lori and I had a spectacular trip. I got to drive our rental car through the winding mountain roads of Lake Como, visit Belaggio, and tour the town of Schignano where Lors father was born and grew up. We saw her grandparents Graves in the mountain cemetery. We saw so many amazing things in Rome and Florence. The Vaticans opulence was unbelievable! The engineering, the construction during the12th through 14th century. Everything, everywhere was just amazing. Our trip was perfect! Ciao! Until next time Italy!

Next Up:

The end of an Era!

Well, I promised that I would follow up with the trip that we would plan again and hopefully not have to cancel. Italy was waiting for us. I reorganized our itinerary in the fall while I was still recuperating from my heart surgery. Slight changes, but all for the better. Rome, Florence, Como, Lezzeno, Belaggio. Schignano, and Milan! Two weeks of Italian bliss. July of 2025 could not come quick enough.

The rest of the year and the beginning of 2025 couldn’t have gone worse than we could imagine. In October of 24, my mother had a horrible fall and severely fractured her femur. It was awful. At 88 years old, the situation was bad. She had two operations to repair the bone. A long rod inserted in her leg with a dreadful looking open wound and additional operations to try to clean out and control a terrible infection. She fought so hard.

While I navigated the holiday season the best that I could, we all tried our best to comfort and help Mom to handle the hospital stays and the time in the Rehab where she would spend her last days. January 5th, we lost an amazing mother, wife ,friend , grandmother, you name it. Elva Keenan was just a wonderful person. Everyone loved her and called her Mom. We would celebrate her life at the end of the month. My Dad was inconsolable. We loved her so much.

Meanwhile, the stress of my open heart surgery, my mom’s passing, the Christmas holiday business non stop work season, and a great friend of mine suddenly passing of a heart attack a week after my mom…whew! The night of Mike’s funeral, I had tremendous pain in my chest and told my Dad that it felt like Mom was laying on me. I tried to relax and take Tylenol, but that didn’t work. The next day, Lori had to take me to the Doylestown ER. The pain was debilitating. The ER was packed, of course, and while I was waiting had to use the bathroom to throw up! I was beginning to pass out on the EKG table while they were checking my heart and the ER tech had the doctor examine me immediately. The doctor ordered a stat CT Scan of my chest and abdomen. Turns out that I had two huge gallstones blocking my Bile Duct. Probably the most painful few hours that I had ever encountered. The morphine was flowing and I fell asleep in the ER. The next morning the surgeon would operate to remove the stones. Lucky me…again.

Around 1 pm the next day I was prepped for my surgery. An ERCP procedure done by a small but scary looking Asian man…Dr. Lee. He had me sign my hold harmless paperwork pretty quickly and in 7 seconds I was out. A few hours later, I ended up in a post op room with a great male, older nurse from NE Philly. Tough guy vibes but a seasoned vet. He came in handy when around 3 AM, I started bleeding out after the closure inside my small small intestine burst and I not only needed to have the Surgeon rushed in at 4 AM, I needed 3 units of fresh blood and platelets infused into me prior to the emergency surgery! OK, Mr. Keenan, let’s count backwards again…10,9,8,7…Goodnight. In our post op conversation, Dr. Lee explained that the closure of my intestine was cauterized but it ruptured since the stones were so large and the incision larger than normal. Lucky me. I was so weak from the massive loss of blood and constantly and continually having to go to the toilet to pass blood lingering in my intestines and colon. For three days! On day four, another surgeon entered my room and informed me that I would soon be prepped to have my Gallbladder removed. Three surgeries in four days!

Ok. Mr. Keenan, count backward, you.know the drill. They knew me well by this time. 10, 9, 8, 7 ,6,5,4,3 2,1…hi girls! “Don’t fight it” they said. “Hit him again!”. Funny, not funny! I was out. But now when I woke up in post op, I looked like a cadaver. Triple bypass scars, tube scars, gallstones surgery holes all around. Very appealing! I spent a total of 10 days in the hospital, lost huge amounts of blood, my Hemoglobin was so low, dangerously low. After my second operation, when I was recovering, I had a terrible breakdown. The likes I’ve never had. I lost it! Crying and sobbing incessantly. A young nurse came in and listened to me and comforted me. She listened the best she could while I cried over my mom, my health. my operations, my cancer. Hit me like a thousand pound boulder, all at once. I needed my mom there telling me that everything would be ok, she wouldnt, couldn’t be. Her mom had passed recently and we cried together. My next meal came with no utensils. Lol! Psyche watch I guess.

Two weeks after my hospital release, my mother’s Celebration of Life was being held after her prior cremation at the funeral home. The amount of people that showed up to bless my mother was over 300 plus. Standing room only, and outside. I was the first and oldest of my siblings to eulogize my mom. I had to sit on a stool during the entire time as my Hemoglobin was so low, and I so shaky still. There wasn’t a dry eye in the room. My sister’s followed me and my nieces after. We had a wonderful luncheon with hundreds of people who spoke such beautiful things about her. A funeral fit for Mom Royalty. It was a tough day. A beautiful day. Rest in Peace-Mom.

Epiblog /3 / Finally!

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