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I guess the operation to install the Hickman Catheter went well. I didnt remember much or how long it took, but I was back in my bubble. A little groggy and feeling out of it, my wife was there and soon a littany of hospital personnel. As I became more attuned to my surroundings, I realized I had this Octopus type fixture coming out of my chest. The nurses began to hook up multiple IV bags and lines to the new catheter.

It was getting later in the afternoon and Lori was going to have to get going. She needed to drive the long road home back to Hatboro, take care of Nick, and get herself some rest. It was a long day. Unfortunately, she had to go back to work the next day. We were fortunate to have great health insurance through her job. Taking a leave of absence was not an option for Lori at this point. It hurt me so much to know that my wife would have to go through all of this while in the last two months of her pregnancy. She would also have to let Nick know that his daddy wasn’t coming home tonight.

The nurses had finished what was needed to hook me up for the meanwhile and left the room. For the first time, I was alone in my room. The glass door was shut and I had a few moments to reflect on what my life was going to look like for the time being. I arranged my few belongings, especially the small photo album that Nick put together. Right on the metal sill next to my bed, the perfect spot. Everything else fit in the little drawer in my bedside table.

Dr. Topolsky came by to let me know that they would be starting the chemotherapy regimen the next morning. Two toxic chemical agents would be administered to me for six days straight. These drugs were extremely strong and would basically wipe out my existing bone marrow and immune system. He told me that at the end of the six days my blood counts would all be around zero. Hence, the scoreboard on the wall. White blood counts, red blood counts, hemoglobin counts, platelet counts, etc., all zero. All of my prior vaccinations… gone. Sounds great doc! On the seventh day, my brother Glenn would be admitted to harvest the bone marrow that I would desperately need to bring me back to life. Failure for his marrow to graft to mine within a short period of time would mean certain death. This conversation was not fun but necessary to keep me informed. Dr. Dave then told me to get some rest. Tomorrow would be another long day. Also, he would be in early to perform another Bone Marrow Aspiration, the first of many to come during my stay. Motherf#$%@er!!!

Lor called me to see what transpired after she left and to have Nick say goodnight to me. I missed him so much already.

Next up: No sleep at the Inn

We pulled up to the front entrance of Hanahmen University Hospital. The valet service promptly greeted Lori and I and we handed over the keys to our car. I looked up at the facade of the building towards the 15th floor where I would be spending the next two months.

The staff of I. Brodsky and associates were ready and awaiting my arrival. After I checked in at the front desk, the transplant coordinator Linda escorted us to her office where I signed a bunch of dire, ominous sounding, legal paperwork. As we concluded she asked me ” Well, are you ready to go?”. Thinking…not really Linda but what other choice do I have. I said, “Sure…let’s do it”.

We began the stroll to the opposite side of the 15th floor where the Bone Marrow Transplant unit was located. It was a pretty scary place actually. A square shaped unit with a large command center in the middle, it bustled with doctors, nurses, Lpn’s and sanitary personnel. Each individual room was about ten feet wide by twelve feet long with a glass wall facing the center aisle. A sliding glass door, when closed, would encase you in the germ free bubble that it was. Your own self contained capsule with a bed, portable toilet, two chairs for visitors and a small bedside table. Also, a TV hanging in the corner. Your only connection to the outside world and entertainment with a VCR player attached. On the wall facing your bed was a very large blackboard too. The wall on the opposite side had a room length window. I had a direct view of the Philadelphia Inquirer building clock tower. I always knew what time it was. It was also a corner room. A luxury. I must have been special.

I was met by a team of nurses and resident doctors along with Dr. Topolsky to brief me on what was to happen next. My belongings were checked to verify that I had brought only what was minimally essential, no nail clippers allowed! I had to change into a hospital gown as Lori was given my clothes to take home. Underwear and socks were the only clothes needed. Questions? Sure…. I had a few. I found out that the blackboard facing my bed was going to be where the daily diary of all of my blood counts would be written for the duration of my stay. Like a scoreboard of sorts.

The Q and A lasted a few minutes but had to be cut short. The transport people had arrived to take me to the operating room. It shocked the hell out of me! I barely had time to breathe and boom… my first procedure. I had no clue about this. Dr. Topolsky told me that the OR surgeon was waiting to install a Hickman Catheter in my chest. I was transferred to the gurney that would roll me to the operating room. When I got to the OR, the nurse explained to me that the catheter was surgically implanted in the center of my chest and secured directly into my Aorta. This so I wouldn’t need to have multiple IV’s to deliver the multitudes of drugs and other assorted nutrients and liquids that would sustain me throughout the process. One three pronged delivery system that would remain in me for the duration of my hospital stay and beyond. This catheter would turn out to be one of the most uncomfortable things you could ever imagine.

“Ok Jeff”, the Anesthesiologist said. “Count backwards from 10 to 1”.

Next up: Back in the Unit

Well, today is the day. July 30th 1996. I had to be up very early because we had to leave by 7:30 am to report to the hospital by 9 am and begin what would be a very dangerous and difficult transplant. The I. Brodsky- Philadelphia Flyers Fight for Lives Center for Leukemia was apparently the place to be at the time if you were in need of a Bone Marrow Transplant.

I had packed the night before. Not much needed since I would be wearing a gown and bootie socks for almost two months. Some t-shirts, underwear, reading materials and pictures of my boy. He made me a great mini photo album. Got me through some tough times….future blogs to come. My hairdo was compliments of my friends Mike and Angela a few days prior. Ang was a hairdresser and gave me a nice baldie style crew cut, basically a shaved head. They say it’s better to be bald than to watch your hair fall out in clumps from the chemotherapy. Woohoo.

We were also fortunate to have a wonderful young lady, Karen, who was Nicks nanny since he was a baby. She was at the house earlier than usual today as were my parents to see me off. It was comforting to know that he was in great hands when Lori would be working and I was indisposed. Our families would also be there to assist with other facets of the process . It really took a Village.

Ok, all set. Only one more thing to do. Say goodbye to Nick. He was still asleep and I didn’t want to wake him. I just stood there, leaning on the side of his bed, stroking his hair. He wouldn’t be able to visit me. Only twelve years old or older allowed. I didnt want to leave. There was a strong possibility that this would be the last time I would ever see him again. THE LAST TIME I MAY EVER SEE HIM AGAIN. This was real now. This little guy was my life. Lori said we really had to go. I kissed him on the head. Then again, and again. I walked to the doorway. I turned around again and went back for more kisses and told him again how much I loved him. I wanted to wake him so badly but I knew it was better to just go. I was too emotional and would have probably scared him. Goodbye Buddy, I gotta go. Love you. Love you. Love you. Wish I could have stayed there forever.

I think I just made it to the car, holding it together as best as I could. When we pulled away, the tears started flowing like a river. I lost it. I couldn’t believe that this was happening to me. The tears continued to flow most of our ride down to the hospital. I had my rock though. “Never, Never, Quit”. It would be displayed prominently by my bed…With my mini photo album and my will to survive. This morning was overwhelming and overall, the hardest and most traumatic moment of my life. I realized right then, right there, that nothing I was about to face could hurt me more than having to say goodbye to my baby boy. Bring it on CML.

Next up: Arrival

It was the week before I would be admitted into Hahnaman Hospital for the process and procedure that would hopefully save my life. There was so much to do to be able to make this a possibility with no real idea of how things were going to work out. My business would have to be left in the capable hands of the young ladies that made up my crew. A huge task in the fact that their experience was basically in sales and customer service, not completely running the show. That was my job. President, buyer, bookkeeper, problem solver, negotiater, merchandiser, major sales, quality control…you name it. When you are a Jeweler and own the business, you are the business. But this was different. I had to put my faith in my people…and my Dad…not a Jeweler. Thank God for him. I would need to make it through the transplant and take care of me. Then, I would be able to go back and take care of business.

I completed all of the aforementioned testing required to secure my admission and tried to mentally and physically prepare. Lori and I went over everything we could think of to be handled during the time that I would be away. Lori’s parents would be coming down from New York to help her with the house and take care of Nick. Eight months pregnant, working full time and having to do both of our domestic chores would be daunting. Then add in driving into the city for many of the 58 days that I would be imprisoned in my plastic and glass bubble to visit me. In the eighth and ninth month of her pregnancy! I couldn’t imagine what she would have to go through or how she would handle it. I felt so bad.

So… a few days before I was to go into the hospital and my head was really about to explode, I realized that I needed to get on the ball and do something that I promised myself I would do. Make a video in case I passed. A video that would let my boys and Lori know how very much I loved them. A video that they would be able to see me and to hear my voice. A video that would teach them about being kind, about doing good in school, about never being afraid to be themselves and about taking care of their mom. I filled them in about girls and how they would fall in love. And fall out of love. And fall back in love. I talked to them about me, my life, my family and my friends. About how wonderful life could be and how sometimes it just wasnt fair. About how meeting their mom changed my life and how our lives changed when Nick was born. How proud I was of my Nicky. How I wished I was there to see him graduate Kindergarten and how I knew he would be so successful. And I spoke to Joey. How I couldn’t imagine that if he was watching this film that we would never have had the chance to meet. I introduced myself…” Nice to meet you Joe, I’m your Dad”. I told him that I knew he was probably handsome as hell like his brother and how great and successful I’m sure he turned out. The only connection he would ever have to me would be a camcorder video. I did the best that I could.

The videotaping went on for about two hours in the low lit dining room of our home. Just me rambling on and trying to impart as much wisdom as a father possibly could in a short amount of time. This for my boys when they would be old enough to watch and absorb the reality of having lost their dad, so young. I have to admit that it was so fuc%#ing emotionally charged. So intense. And it was tearful. So full of pain and regret. It would be a testament to my life and hopefully a comfort to theirs. It drained me. It also put a fire in me so strong, so deep, to fight so hard….that they may never have a reason to view it. That I’d survived. Finally, I said goodbye to my parents, siblings, family and friends. Thanked everyone that loved me and that they knew I loved them back. I signed off….and hoped for the best.

Those tapes have remained… unwatched and buried in a box in our basement, for twenty four years. For now, we’ll keep it that way. An Oscar worthy performance waiting to be discovered… for the ages.

Next up: Times Up.

Nick and I were on our way to our first camping trip together. In two weeks I would be leaving him to begin my Bone Marrow transplant. How could I pass up a chance to spend time camping with my 27 month old son. I loved the outdoors. I grew up in the woods behind my house. Navigating the creeks and woodlands was magical to me. I wanted to share this with my son. It might be the first and last time we would ever be able to do this.

The ride to the campground was special. Nick had his favorite music and sang along the best a two year old kid could. He loved … “Knock Three Times” ….on the ceiling…his all time favorite. ” “Sugar Sugar”…a close second and “Champagne Supernova” by Oasis. We listened to those songs every time we went out in the car. But something hit me like a brick after I was diagnosed with Leukemia. Nick loved to sing the chorus of Champagne Supernova. It was pretty much all he could keep up with. He loved singing the chorus…”We were getting high…We were getting high”. It was really cute even though the words could be, well, about getting high? But the song took on a whole new meaning to me. To this day, 24 years later, I cannot listen to the song without tearing up and getting very emotional. Like a trigger to my self diagnosed PTSD that I know I have after surviving my transplant and so much continuous mental duress in the tough years that followed.

“Wake up the dawn and ask her why…a dreamer dreams he never dies…Wipe that tear away now from your eyes….Slowly walking down the hall…Faster than a Cannonball…where were you when we were getting high… We were getting high….Someday you will find me… caught beneath a landslide… in a Champagne Supernova in the sky…a Champagne Supernova in the sky… But you and I…We live and die, the worlds still spinnin round…we don’t know why…why, why, whyyy…”

Kills me every time. Like I would lose my battle and I was caught beneath the landslide…the Champagne Supernova in the sky. And all the while if I did not make it, his world would still go on. So every minute we were together…we were getting high. We were getting high…Just being together.

We made it to the campground and Aunt Donna and Uncle Dave directed us to our campsite. We pitched our tent, set up our gear and helped Uncle Dave make a nice campfire. We loaded up on hot dogs, Snapple ice tea, baked beans and toasted marshmallows. A somewhat gastronomically deadly combination for someone on Leukemia meds. Also a bad idea to give your two year old a lot of Snapple Ice tea.

Finally around 11 pm we called it a night and got into our tents to go to sleep. I brought a couple of books to read to Nick and when I finished reading them to him, he was finally getting sleepy. I was exhausted. Anyhow, he was still up and squirming around about one AM. If I fell asleep and he didn’t, would he try to go out into the dark, I wondered? Soooo…..I zipped the entry to the top of the tent door and tied a string of knots to keep the zippers together so he couldn’t get out. Seemed like a great idea. About two AM he was finally asleep and so was I. So I thought.

The combination of dinner in my belly was churning and suddenly about to explode like Mount Vesuvius! This was bad! I had no toilet paper….we were far from the latrine…it was pitch black out and I couldnt get the knots out that I tied the zippers together with! OMG! I grabbed my knife, sliced a hole in the door of the tent, grabbed my flashlight and took off for the nearest tree! Leaves would be my go to toilet paper.

There were lots of noises out there in the dark. Pretty unnerving. I just had to get it over with. All of a sudden there was a rush of footsteps in the leaves pretty close to me. A wolf? A bear? A raccoon? A deadly savage rabid animal hunting me, eyeing me, through the trees. I saw a shadow darting by. Kinda looked familiar though. I whispered… Nick? As the figure darted by again this savage was more like a laughing, giggling Hyena. I could have killed him. I had to chase him running through the darkness. When I caught this animal…NICK… we retreated into the tent where he promptly fell asleep and I would lay there just watching him sleep all night long.

So long story short…I never slept. I carried him about a quater mile on my shoulders to the lake at daybreak. He caught his first fish ever, got bored, and then poured an entire bottle of suntan lotion over his head before 7:30 am. The camping experience was over. I wiped as much lotion off of him as I possibly could. Put him back on my shoulders and trekked the quarter mile back to the campsite. Loaded him in his car seat and headed home… two days early. He fell asleep immediately on the ride home and slept the whole way back. We pulled into the driveway by eight AM. Lori was still sleeping and had locked the storm doors so we were locked out of the house. After several calls, and about thirty minutes later, she finally answered her phone and unlocked the door. It was just enough time though, to watch my beautiful baby boy sleep and we listened to Champagne Supernova a couple more times. Slowly walking down the hall…faster than a Cannonball… We were getting high. I could have sat there forever.

Next up: The final preparations and a potentially Oscar winning film.

My ” D-Day”. Departure date. In three weeks I would be leaving my home to go to Hahnaman Hospital in Philadelphia to begin my long stay in the Bone Marrow Transplantation Unit. July 30th was my day to report at 9 am. Linda, the transplant team coordinator would send me the list of what I could bring, what I couldn’t bring and the final test preps needed to complete before I was admitted. This included a Cardiac stress test, Echocardiogram, more bloodwork, chest xray and dental clearance. A lot to do. No time for mental or emotional stress. Too busy.

In addition to all of this mayhem, Mr. Bob, my neighbor across the street, was starting construction on our house about the same time I was leaving. We were having a total exterior rehab being done. Siding, roof, Windows, Doors, new porch, etc. Lori would have to be the liason for me. Oh boy. Good times. Again, no time to stress.

So anyway, my sister Donna mentions to me that she was going camping in the Lehigh Valley the next weekend. Not too far away, I thought that I could maybe take Nick on our first ever camping trip. My thought process at this time was “What if”? What if I dont make it? Never got the chance to do this? I should take advantage of every opportunity to do things with Nick before I go in the hospital. It would be great! Finish some prerequisites this week then head to the Great outdoors. We would leave Mom to some peace and quiet and head out early Friday afternoon.

When Friday came we packed up the car, strapped Nick in his carseat, said goodbye to Mom and we were on our way! Pitching tents, making campfires, toasting marshmallows, going fishing. I couldnt wait to get there!

Next up: Champagne Supernova and the shortest camping trip ever!

My son Nick was only two years and 2 months old. My first born. My son was my world. The pain I felt in my heart was excruciating from the moment Dr. Terzian told me that I had Leukemia and every day thereafter. The thought of leaving him fatherless at two years old could never happen. But what if it was the other way around? If my son was diagnosed with cancer. My first boy. The birth of Nick was by far the most important, emotional, exciting and amazing event in my life. I watched a miracle happen. I couldn’t imagine this situation being reversed. I would be beyond devastated.

I saw this devastation in my dad. I could feel it when I told him the news, feel it at the hospital and hear it in his voice when we spoke on the phone. My mom was a strong woman. Her bout with Colon Cancer and its successful outcome made her a survivor. She felt that punch in the gut when they tell you you have cancer. But managed to do what was needed to defeat it. My dad was by her side as she was operated on and finished her recuperation. It was a happy ending. Without her diagnoses I would probably have never had mine. Lucky for me.

I was their first born. I know that my dad had to feel that same amazing way that I felt when Nick was born. So how else could he feel now. Devastated. And helpless. My Father was a proud hard working exec of a large company. Type A leader and great at what he did. When something like my cancer diagnoses happened, no matter how much you might want to control the situation, there is nothing you can do. Helplessness is a nasty and a terrible feeling. You can’t control Cancer. You need to trust your doctors, trust your faith and support as best you can.

My Dad was very close to his Mom. An only child, they grew up together in very hard times. When my grandmother was diagnosed and passed from lung cancer at a young age he was devastated. The first time I ever saw my Dad cry was graveside at her funeral. I was 13 years old. As they were lowering the casket into the ground, I will never forget the way he squeezed my hand so hard as he bowed his head and cried. It pained me to feel that I could possibly have him put in that same position again…with his first born son.

As time went on, my mothers mantra was always that “Everything would be alright”. My dad had kept his emotions close to the vest. He always needed to keep busy. He loved to do projects and he would volunteer to get Joe’s room ready while I was in the hospital. That helped him keep busy and it helped us. I never saw him cry during my journey. He had to be strong, support me and do anything in his power to get me well. I’m sure the tears flowed down when he was alone. Just like mine.

Next up: Preparations for 07/30/96

Everything was moving at a pretty fast pace. The Hydroxeurea was doing its job for now and had lowered my white blood count to 26k in the three weeks that I had taken it. Sounds great but this drug only works for a short period of time. This is known. Dr. Topolsky arranged appointments for my family to receive blood tests to see if a match would be possible for my Transplant. Things were rolling along. The anticipation of the results was driving me crazy. It would be about two weeks. A positive match was crucial to my survival.

And my wife…she was wonderful. Working everyday, taking care of business around the house and five months into her pregnancy. Just amazing. I know she was hurting too. Same questions, same anxieties and probably the same mantra..”why me”. She never showed it though. Tough Italian girls from the Bronx are a rare breed. I was blessed to marry one.

Lori requested a special, non-scheduled, appointment to have another ultrasound done so we could find out the sex of our baby. She explained the circumstances to the OBGYN and they agreed to set it up. It had to be as soon as possible. In a few days we would find out.

The ultrasound tech knew why we were there when we walked into the exam room. The time had come to meet my unborn child. I would be going into the hospital, if everything went as expected, months before the baby was born. With 50/50 survival odds, I or we had a chance of never meeting. Can you imagine?

Well, after a couple minutes of preparation the verdict was in. No balloon popping, no cake cutting, no whatever reveal method you could think of. This was 1996. This was my miracle. If I had been diagnosed five months earlier we probably wouldn’t have gotten pregnant. After the transplant, it could never happen. The intense chemo would render me incapable. And there it was. The ultrasound screen showed us another beautiful baby boy! Coming soon…due around September 30th.

His name would be Joseph.

Up next: The Results Are In.