Month: November 2020

I was coming up on the one year anniversary of my diagnoses. A conundrum of sorts, I guess. Do you celebrate one of the worst days of your life or do you celebrate because you are alive to see it? I didn’t know either. But I was grateful to be alive. What the future would hold was a big question mark. We were moving in the right direction. Gradually returning to work and getting on with life. My doctors appointments were now increasing to bi weekly and then to monthly visits. The usual bloodwork, weight check, and the occasional Chimerism. A Chimerism showed the percentage of my brothers DNA versus my own DNA. The test was done using a normal blood draw and was a welcome substitute for a bone marrow aspiration. The goal was to be one hundred percent my brother. Full change. From my type O blood to his B positive. We were close coming into the summer, almost there. It wouldn’t be long and the anti rejection drug was working well.

We are going to fast forward a bit. The status quo and my daily life becomes pretty mundane at this point. By June of 1997 I was working full time again and trying to put the past year in the rear view mirror. I had gained about thirty pounds back and my appetite was on a roll. It felt so great to be normal again. I was enjoying my boys so much now, life was good. Also, my Platelet count was gaining ground, over one hundred thousand and stabilizing. Still way below the norm of 250k to 450k, but guess what? Dr. Dave gave me the green light to start playing hockey! The season was coming up in the beginning of September and as long as my platelet count was above 100k, I was good to go! Now, where do I play? I was still underweight, hadn’t skated in over a year and a half and I knew that playing in the normal men’s league level that I was used to would be no good. I wasn’t ready for that.

Enter the NNHA. The National Novice Hockey Association. A fairly new National organization that was setting up beginner leagues across major U.S. cities. We called it “The Not Necessarily Hockey League”. The league was set up with four different levels of A, B, C and D. Now, I wasn’t sure how beginners were classified into four divisions, but whatever, I made the call. I explained my situation and was put on a D level team to start the season. Entering the rink for the first time again was like heaven. The smell, the cold air, the usual crappy locker room… Heaven. The players that I met were guys from all walks of life that loved and wanted to start playing hockey. I coached guys like this for many years as a Learn to Play instructor at the Wintersports Ice Arena near Philly. They were literally taking the ice to play in a real game for the first time. I had played for twenty five years. This would be interesting.

I still looked pretty sad. Hair was still growing in, pale, skinny and totally out of shape. I had to completely reign it in. OMG, you would of thought that I was an NHL hockey player. It was fun though and such a great feeling. It only lasted a couple weeks though. I was getting my wind back and my legs. The league moved me from D to C to B to A in about four months. We did have a few hiccups though. Twice my bloodwork came back and my Platelet count was under 100. I had to wait it out and bite the bullet. If I had gotten hit too hard or with the puck, it could cause me to bleed uncontrollablly. I was already full of bruises anyway but it could get worse if I didn’t follow Dr. Dave’s orders. When I moved up to the A division, I recruited some friends to play on my team and we won the Championship. I was back Mr. Rod Brindemour, just like you said I’d be.

Next up: Team USA and A Trip to The Netherlands

After the New Years mishap, it was time to start getting back to normal. Time to heal and time to be me. It was a new year. 1996 was an absolute whirlwind of huge changes. Ups, downs, tragedy and triumph. This was life dealing with cancer. 1997 would be much better. I had two healthy baby boys, a wonderful wife, a supportive family and a lot of hope.

In February, I would start spreading my wings and venture out a bit more. A few days a week I could go into the store and take care of some business. I still had to wear a mask and had to limit my exposure to customers. A baseball cap was imperative. My bald head and the wisps of hair starting to grow back in were not my best look. But they were growing back in! WooHoo! It felt great to be back. Things were normalizing at home too. It was a new beginning for me with my boys. I was able to spend more time with them than I would normally. Before I was diagnosed with Leukemia, I was averaging seventy hours a week at the store. Mall hours are brutal. 10 am to 9 pm, six days a week and 11 to 5 on Sundays. It would be a while before I could work those hours again. My recuperation would last almost a year as long as there were no more major setbacks. Spending so much extra time with my family was wonderful. So much time to bond with my boys. These two little guys were the reason that I knew no matter how hard the fight, I was winning. Joey was five months old now and Nicky was getting ready for his big third birthday. Every day, every week, every month and every new event was a milestone. This may sound over dramatic but dealing with cancer really alters your sense of being. The World changes. Perceptions change. Life changes.

My trips to see Dr. Dave were gradually spreading out too. The weekly visits for bloodwork and examination were expanding to two week increments. My counts were improving gradually as well as my weight gain. At this point in my recovery, the most watched stat was my platelet count. We were hoping to hit 100,000 in the near future. The average normal count is from 250k to 450k. As long as my count was under 100k the risk for bleeding uncontrollablly was very high with even slight injury. Bruising was a constant issue right now. My White cells were improving very well, correlating to a stronger immune system and response. It was Cruise time. Keep eating as well as possible. Keep vigilant with my meds and my interaction with the public. Keep enjoying my new lease on life. Start getting back into the Groove.

Up Next: Life Goes On

The Holiday season was flying by and the business had survived another crazy season. I was also surviving a very special season. Recuperating from the Bone Marrow Transplant was grueling yet satisfying as every day was a milestone of sorts. I was so appreciative of my doctors, my family, my employees and everyone who had a hand in my well being and making it this far. My appetite was getting better as well as my ability to taste some foods again. Heaven. The main medication that I was on, Cyclosporine, tasted as bad as you can imagine and crushed my taste buds. As time went on I got more used to it. I still had to quarantine a bit and wear a mask if I was venturing out though. The holiday festivities were changing gear. The weekend between Christmas and New Years Eve was pretty mild weather wise and some fresh air would be very welcome. Lori had ordered pizza for dinner that Saturday evening and I really wanted to pick it up. I hadn’t driven my car in so long and this would be the perfect chance. The first ride in my beautiful dark green Cadillac STS sedan. The shopping center was right around the corner. An easy first attempt behind the wheel since July. I was on my way! A quick stop at the Super Fresh for milk and some drinks and then the Pizzeria for a couple pizzas. I had a hard time eating pizza. The texture and taste were awful for a chemo palate. So be it.

I couldn’t spend too long in the supermarket. Had to be in and out. Too many people and too many germs. Grabbed the milk and a few other things we needed and almost made it out. ALMOST MADE IT OUT! THERE IT WAS. STARING ME IN THE FACE. MY FAVORITE! THE SUPER FRESH SALAD BAR! I LOVED THAT SALAD BAR! As I inched closer and closer, drawing me like a magnet. I kept thinking “No Way”. The thing was a mess. Not serviced well because, well, it was the weekend between Christmas and New Years. I was so hungry. It would be my usual. Romaine lettuce, Seafood salad, Three bean salad, green peppers, chi chi beans, croutons, bean sprouts, red roasted peppers, bacon bits and ranch dressing. Like clockwork. Always the same, for years. It was so delicious. I couldnt wait to get home! The last time that I had my special salad was probably seven or eight months prior. Let me get the pizzas and get home. Was I supposed to be watching my diet? Was I supposed to not be eating fresh or raw vegetables? Was this the worst time to be eating from a salad bar? Yes…Yes…and Yes. Whatever. It was happening!

When I got home Lori looked at me like I was crazy. I immediately began to chow down on that sucker. It actually tasted so good, I couldn’t believe how good it was and how much I missed this simple thing. When I was done, there wasn’t a morsel left in the plastic container. It was a beautiful thing. I had a full belly and a bit of contentment for once. Nick loved his pizza and he was all red faced and sleepy. Time for a quick bath and snuggle with the boys to get them ready to go to sleep. Then some TV time with Lor and an early off to bed. My first solo venture in six months, literally two blocks in the Caddy. Woohoo! It went all downhill from there.

It started very early in the morning. A very intense, sharp, gnarly type pain in my abdomen. It was getting worse by the minute. Almost unbearable. I had developed a fever and I was extremely nauseous. I couldnt make to the toilet fast enough either and was exploding as well as bleeding. This was bad. The call to Dr. Daves office was quick as well as the ride to the city would be. I was rushed right up to the 15th floor, into my corner isolation room 1515 with the clock tower view. The preliminary diagnoses was GVHD. Severe attack on my digestive system. Life endangering symptoms that needed immediate treatment. This was scary. The IV bags came pouring.in. Massive amounts of steroids to quell the attack on my system. Bloodwork upon Bloodwork to rush to the labs. Only problem, all of the primary docs were on vacation! Deja Vu…Labor Day weekend. Deja Vu …Bone Marrow Transplant. The pain meds that they were pumping in to me helped but they don’t alleviate the fear of the unknown. It happened so quick. Very unusual. I hated steroids. This was the treatment though. Steroids to reduce the inflammation and control the disease. Or hope to get it under control. The blood testing wouldn’t be ready until Monday, the next morning. The painkillers helped somewhat and I needed to sleep. The intense pain all night and day was draining me. The anxiety too.

It was a strange turn of events though. I wasnt having any issues with GVHD at that point. Very strange. Lori went home to the boys, I would call with results in the morning. Here I was, back in the bubble again. Time to sleep.

About eight am my door flew open and a huge flurry of action was whirling around me. Four nurses, grabbing IV bags, switching them all around. Adding and subtracting new bags….quickly! The on call Doc came in and asked if I wanted the good news or the bad. Don’t play with me, WTf is going on? Good news…you don’t have GVHD…bad news… you have Salmonella Food Poisoning! The bags of steroids were coming down and bags of heavy antibiotics were going up! Apparently this was a bad situation. Very bad, with my severely non vaccinationed immune system getting attacked. Then the questions. Where did you eat last? What did you eat? A supermarket salad bar? What were you thinking? Calls were made to the CDC and FDA. This was serious. Request for the food container turned out to be helpless. I had eaten every morsel in the bowl. No evidence. The antibiotics would not be completed until the end of the week. Better safe than sorry. The runs to the bathroom were frequent and fast. I was entertaining both ends of my body with waterfalls of really bad stuff. Hopefully, this would subside and my immune system would win it out.

So since I was down and out for the time being, New Years would be spent alone in my bubble. The dinner menu had hot dogs and hamburgers on it , special New years fare to enjoy and watch the fireworks from my window. Not in my condition. I didnt even want to look at food. It was very depressing. I wanted to be at home hugging my wife and kids. Kissing them at Midnight and wishing that there would be many more Happy New Years! Not this year. I would miss the special party we had planned. Just needed to get better again and get the hell out! My family contacted an attorney to handle the situation with the market. This was one messed up situation. I could have died. The food in the salad bar was found not to have been turned properly, stored properly and kept at the wrong temperatures. I was seen on store video making my salad and being clean. Making my purchase and leaving the store. The settlement was quick, but small. Just an acknowledgement to their mismanagement and responsibility on making me sick. I appreciated the apology and acknowledgement of fault. I could have died. We didn’t want that.

This was a huge scare to my family and myself. I needed to be more vigilant. Another week in the hospital was just a drag. Salmonella food Poisoning is no joke. Especially when you’re in my condition. Time to stiffen up the controls. Winters coming.

Next up: Getting Back in the Groove.

I have to tell you…being a Jeweler during the Christmas and Hanukkah holidays is tough. Sure, the month of December is huge for business, but it comes with a lot of sacrifice. Working seven days a week, long hours, from Black Friday until Christmas Eve is grueling. Like I said in a prior post…”We are Santa Claus”. No excuse for a gift not being ready for Christmas Eve. No room for error or anything else. Got to be perfect and on time. Jewelry is often the premier or biggest gift of the holiday for loved ones. We’ve never had to say we’re sorry though and I’m proud of that record. The sacrifice is not being able to enjoy the holiday festivities with your family every year. No shopping trips or travels to see the holiday light shows or Rockefeller Center trip to New York City…you get the idea. No time. I would work straight through the month until 5:30 Xmas eve and rush home to help my wife finish cooking dinner for twenty. Every year we hosted my entire family. Lori’s fabulous array of appetizers would be almost gone by the time I got home. The ride home from the store was kind of depressing. The only people on the roads were the desperate trying to find someplace open for last minute gifts, and me. This year was different.

The 1996 holiday working season would have to take a backseat to my recovery. I was able to go into the store for a little bit to check on things and meet vendors. The majority of the time though, I would be quarterbacking the business from home. This was not easy. We had expanded the store earlier in the year and were carrying many new and different lines of merchandise. Thankfully, my employees were up to the task and things went well. First time in a while that I was able to be home for Xmas eve and yes…appetizer heaven. Except, I still was barely able to eat. What a bummer. No taste and no appetite. Santa Claus was coming to town though . It would be Nick’s first excitable Christmas. Almost three years old, it would be a big deal for him. And us. Joey would be three months old and oblivious to the excitement. We had the usual hectic and familial scene at the house on this special night. It is always special to have our whole family together, celebrating, eating, catching up and opening our pajama presents. A tradition started by my grandmother and continued by my Mom. Gifts of Xmas eve pajamas for everyone to open that night and wear while those visions of sugar plums danced in your head. When everyone had gone home, we put the presents for the boys and each other to open Christmas morning under our tree.

Six months earlier, I didnt know if I would see another Christmas Eve. This was indeed a very special year. I had made it. Merry Christmas and Happy New Year! So I thought.

NEXT UP: Salad Bars and Salmonella.

It was now November and starting to get cold in our neck of the woods. The Temps were steadily in the 30’s and 40’s. Too cold for me. I was dreading the snow. I would have to bundle my skin and bones up and head out to my appointments. I was about to begin a succession of vaccinations. Measles, mumps. Chicken Pox, Tetanus, Flu, etc. Should be fun. But today was another trip to see Dr. Dave. He was waiting for me. My three month Bone Marrow Aspiration follow up. He was a scary individual with that huge needle in his hand. A daunting figure, smiling and looking forward to bringing the pain. Trying to make me feel better once he told me that he had one before…. just to see how it felt. I knew that he was lying. He finally gave in and said that who in their right mind would have a bone marrow aspiration for no reason! Agreed. But today, he wasn’t here. A personal emergency. Mike Styler would be the guy today.

Mike was a very meek and mild kind of cancer doc. Very intelligent. Very small and thin in stature, his voice was very soft and I had never seen him get really excited. He was a great Doctor. My go to guy when Dr. Dave was absent. But today would present another problem. I never had an aspiration from Mike before. This was out of my comfort zone. These things hurt like you can’t imagine. We went over the usual questions about my condition and medications. Reviewed my bloodwork and other labs. All seemed good for the moment. Now it was time for the big needle. I never had it before from Mike.

Mike needed a stool to get above me to begin the procedure. I was so nervous. Dave and I were a team. An orchestrated show of prompts and gestures. All to make the procedure as quick and painless as possible. Not today.

Mike began the needles that injected the novacaine to numb the spot where the larger needle would be used with the Lidocaine to numb the deep tissue. No issues. Now for the big boy. I am blessed with extremely hard bones, lucky me. Mike was pushing and turning and pushing and turning with all of his might. Pop!! He was in. Its all good now. Just grab the top of the table curl my toes around the bottom of the table… and sloooowwwlllyy withdrawal the hypodermic syringe of liquid marrow. AAGGGAAAHHH!! ARE YOU KIDDING ME!!! HE PULLED THAT SYRINGE IN ONE LIGHTNING MOTION!! No warning, no hesitation. HURT LIKE A MOFO!!

That was the last time that Dr. Mike would touch a big needle around me. I needed extra motrin and extra gauze pads to stop the bleeding! Never again!! I really appreciated Dave at that point. Another week for my results. Time just hangs when you are waiting for those results. Cross my fingers the counts are good. Gotta get wrapped up warm and head out again. Pretty sore but that’s life. Got to take it easy when I get home. Now the wait begins. Need those great results. Results have run my life for twenty five years now. A wait and see game. Should have them by Thanksgiving. This would be a special feast this year. A feast of love and life and promise. A new chance, a new beginning.

Next up: The Holidays