Author: Jgknjlapk

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Champagne Supernova and the Shortest Camping Trip Ever!

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.

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07/30/1996

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!

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When Your Child Has Cancer

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

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The Results

It had been about a month since my CML diagnosis and almost two weeks since my siblings were blood tested for their DNA markers to see if they would be a match to mine. A six out of six marker match would be the ideal outcome and provide the best situation for success. It felt like forever but Dr. Topolsky said it would take around two weeks for the results.

There was a lot of speculation as to which one of my siblings would be a match, if any of them. It was very possible that none of them would be. This was quite normal as my research into the percentage of success showed that possibility. I read about many bone marrow transplant patients that had to rely on the National Bone Marrow Registry for their donor or have a transplant using their own marrow which was radiated to remove the cells that would cause the CML. This type of transplant was not very effective.

The competitive nature of our family made the wait somewhat interesting. Bets were being thrown out there and odds laid out. My brother Glenn was 14 months younger than me. He had blond hair and blue eyes. I had brown hair and brown eyes. He was a clean freak, honor student and a soccer player. I was kind of a slob, attended school and an Ice hockey player. His odds seemed low. Plus I was much better looking. My sister Donna was six years younger, also had blond hair and blue eyes, also an honor student, a lot like Glenn. So far not looking good. Then there was Lisa. She was twelve years younger than me, an oops baby, lol, but had brown hair and brown eyes. She looked a lot like me, was a good student and although she was much younger than me seemed like the frontrunner. Genetically, it made sense.

So Lisa…Glenn…Donna. Thats where I had it. When the phone finally rang with Dr. T on the line, I hoped that a winner would be revealed. He was very excited and the news was terrific. A perfect six for six match on the DNA! On the first shot we nailed it! Genetics are very interesting we found out. My six for six identical match had blond hair, blue eyes and a different blood type than I. Dr. Topolsky explained to me that our winner, Glenn, was conceived in such a short amount of time after me that it may have played a large part in the result.

Needless to say, Donna and Lisa were disappointed but nevertheless overjoyed by the outcome. I had a match and was again moving forward. The transplant coordinator would be in touch very soon to set up my appointments for the next two weeks and set the date that I would be admitted to begin the transplant. So much to take in and prepare for. As happy as we all were, I know that Glenn was probably the happiest of us all. He would have the chance to save my life.

Next up: When Your Child Has Cancer.

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His name is Joseph

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.

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Officially a Cancer Patient and a special Ultrasound

It felt good to be home. So thankful for my employees who were taking care of my business. I had no time at this point to focus on anything but the immediate future and what would soon transpire. The business was running well and I had faith in my people.

I called Dr. Topolsky’s office and scheduled my first appointment right away as instructed and would be seen in a few days. The office in Hanahmen Hospital was that of Dr. I Brodsky and Associates and named for Philadelphia Flyer Barry Ashbee who passed from Leukemia during his career. Specifically the ” Philadelphia Flyers Fight For Lives” cancer center. It would become my main health hub for the next 22 years. Hated the traffic though.

The next few days were just a whirlwind of phone calls to and from family, friends, business associates. Insurance companies…you name it. There was no time to pity myself anymore, although the “Why me?” mantra had settled in quite well. “Why me ?”…who knows. Since I was the only one of my lifelong friends who never drank, never smoked, never did drugs, etc,etc. They all vowed to continue with their vices since, well, maybe I hadn’t poisoned my body enough! Thanks!

The waiting room at I. Brodsky on the 15th floor was bustling. Apparently, cancer was a big business. Lori had escorted me on the appointment and we signed in and began filling out mounds of paperwork. After a while I was called back by a nurse to start the process of my first appointment as a cancer patient. First stop the scale…ugh. 185 ok. Next the blood draw seat…Across from the scale. 10 vials of blood later, I’m off to an exam room and a 25 minute wait. Every appointment started with an exam by an Oncology resident and some questions…the same for over twenty years. But this was different. This was my first appointment.

Dr. Dave Topolsky, nice to meet you Mr. Keenan as he shook my hand.. That would change quickly to Dr. Dave or just Dave and of course Jeff or KEEENNANN! He was a phenomenal guy. He was different. Avid rock climber and outdoorsman. Long curly black hair and beard…grateful dead esque. From Northeast Philly. Gave it to you straight. Always..well almost always..upbeat. He laid it out to me quickly. Lots of bloodwork to come.. Your siblings, your parents and anyone else after that if needed. Needed to find a matching donor. ASAP! Dave explained that it was important to move quickly before the disease could advance to the Blast Crisis phase. There was no cure for that. The bone marrow transplant was my only choice to survive. Or not. The transplant had a 50/50 chance of survival during the procedure and a 50/50 chance after. After a long question and answer session,there was the obligatory bone marrow Aspiration. Here we go again. Grab the top of the table as tight as possible, curl your toes at the end of the table…you know the drill. And here it comes…Motherf$@%#@!

That was enough for the first trip. Set up the next appointment, down the elevator. When we made it to the car, I looked at Lors bulging baby bump and I said to my wife that we needed to have an ultrasound done. I needed to find out what was cooking in there so we could unofficially meet and give a name to this child whom I might never get to meet. She agreed to set it up. Another exhausting day. Time to get home and squeeze my sonny boy Nick. Much needed therapy.

Next up: His name is Joseph

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Finishing Florida and the Call Seals the Deal.

The week in Florida wore on as the reality of the situation sat on my shoulders like the rays of the Orlando sun … Relentless. A few days by the pool just relaxing, conversing with friends and playing with Nick helped the time pass by. We enjoyed dinners out and a few more parks and sights to see, as these diversions helped to pull me away from the darkness.

At night, I entered into an alternate state of despair. With Nick tucked in and sleeping soundly, my attention and my anguish was directed towards another major facet in this fight. As my wife Lori lay beside me I would put my hand on her big belly and try to connect with the little person growing inside. With four more months to go the questions would run on in my head like a broken record. ” Will I ever get to meet my child”? Will they ever get to meet their dad? What would he or she look like? Will I ever get to hold my baby? It just wasn’t my future I was worried about. It was theirs. How would they grow up without me? How could I leave my wife so young to raise the kids on her own? We had to get home and get this show on the road. I needed more answers, more education and more time at home to be able to process this mess.

As we prepared to make our way back home, the call from Dr. Terzian came in. The Bone Marrow Aspiration confirmed the diagnoses. I Had Cancer. I asked him if this was one hundred percent certain as far as the lab testing was concerned. Was there any way that they could be wrong. A Hail Mary question I guess. He told me that I could always get another opinion but he was very certain. I would not have to see him again as he recommended me to a young Oncologist at Hanahmen Hospital in the city named Dr. David Topolsky. He would begin the process of testing myself and my family first as potential donors for a potential Bone Marrow Transplant. Dr. Dave wasn’t playin…as soon as I got home… I needed to be there. No delays.

We thanked the Selvaggios for graciously having us and helping us navigate this crazy week with what should have been a fun filled vacation and get together. Who would have known. The trek back to Pa. was on. Another two days of driving with my eyes focused more on the rear view mirror than on the road ahead of me. Staring at my beautiful baby boy. Staring at my beautiful baby boy.😔

Next: An ultrasound and I am officially a Cancer Patient.

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Never Never Quit

The conversation at Aunt Michele’s was solemn but informative. Well as informative as we could be at the time and it wasn’t very much. Nick was finally asleep and we spoke about my pending situation into the night until I had to excuse myself. I was mentally and physically exhausted. It was a long trip. I needed to sleep. Lori and Michele were friends for years and years. Best friends from the Bronx. They would catch up for a while and I’m sure Lor needed some time alone without me to talk about how she was feeling. Old friends are good for that.

We got an early start. A quick breakfast and on our way to Orlando. About a 30 minute ride and there it was! Disney World! Nick was so excited! I had never been there either so we were set to go. I kept my best smile face on as best as I could as we rode the rides and went to the attractions and ate fun food. And then…The Lion King Show. Nick loved the Lion King. It was great. A phenomenal show and Nick was loving it! I was holding him up in front of me so he could see better. Then it happened. The scene where Simba watches his father Mustafa die in the stampede while saving him in the last second. It tore me apart. Not knowing if I would be around for him, to save him, to be there for whatever he would need. How could that happen? Only one or two years to live? This wasn’t real was it? Just a baby watching your father die? I pressed my nose to the back of Nicks neck. I smelled his hair, his sweat, his beautiful baby soft skin. And I just kept breathing it in. He didn’t see the tears flowing down my cheeks. The way I was shaking and grabbing him so tight. It was traumatic in the moment for me and I never ever forgot that smell. That incomprehensible feeling of guilt that I would deprive him of a father at such a young age. I had to get out of there. Thank God it was almost over. I held on tight and just kept it together. No way I was leaving my boy. Not now, not ever.

Nick never realized the trauma I was experiencing behind him. He was too young to grasp the situation and he wouldn’t know anything about my battle for a long time. As the day wore down, of course we had to stop in the gift shop. Mickey T’s and Disney Collectibles and of course whatever Nick wanted. As I wandered around the shop waiting for Lori to finish up I noticed a quartz rock that was inscribed with what would stick with me as my mantra for 24 years….”Never Never Quit” it said. This rock would follow me every step of my way. It was gospel. It was true. I would ” Never Never Quit” …that was for sure.

Next up: My wife was 5 months pregnant.

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The Next Leg.

I was pretty tired the next morning. My right hip was aching from the Bone Marrow Aspiration that skewed me deep into my hip bone. It was not a pleasant experience. The pain when the huge needle pierces the bone and the moment the Marrow begins to be exracted by the huge syringe is awful. I grabbed the table with my fingers at the top and my toes at the bottom and held on for dear life. I’m sure others who experienced a bone marrow aspiration can fill you in. This was my first. After 6 more years I think the count topped out at more than twenty five procedures. A real “Pain in the Ass”! When I got home I took a few ibuprofin and my new drug Hydroxeurea. This drug would help reduce my CBC- White cell count, currently at 55k. Normal is 6k to 10 k. With CML Leukemia, your white cell count uncontrollablly grows into the millions rendering your immune system unable to fight infection. The multitudes of new white cells are just too immature to help you survive.

Lori, Nick and I packed up the car to finish our journey. A longer leg from Richmond to Lake Mary Florida where Aunt Michele was waiting to greet our sullen crew. Another rough trip. Tears in my eyes, trying to keep Nick in the dark and make him laugh. He had no clue. Two and a half years old, so smart,so cute, so happy. He was my world. We’re gonna have a great week for him. And hopefully, Lori and I. I figure that I’ll give this predicament a few days to sink in and then I’ll need to get over it. The battle will begin soon and there will be no way that I’m losing it! We’re here! Hi Aunt Michele and Uncle Ed! Let’s do this Disney vaca. We’re ready y’all!

Next up: Mickey and the Lion King.

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Breaking the news

Lori went back to her office to wrap up some office issues she had left to handle before our departure to sunny Florida. I couldn’t imagine what state of mind she was in after she left the hospital. My job now was to break this fabulous news to my parents and family. It was about a half hour drive to my their home in Fort Washington, PA. This setback would, of course, delay our departure but this news was too important to tell them over the phone. This development was going to rock their world in a terrible way. We have such a great, loving family and although no family is perfect…we were pretty tight. This news would test this to the limit.

I pulled in the driveway and hesitantly exited my car and walked in the door. They were waiting for me to arrive, no idea why, since my call to them was very vague. “I have Leukemia”, I told them. As I began to explain the diagnosis and treatment options, the pain I could see in their faces was causing me to cry and they began also as the reality of the situation sank in. This was just unbelievable. I had a great business, a wonderful wife, beautiful son and now only four months until the birth our second child. Why me? Never smoked, never drank, never did drugs Just bought a new house. What the F**#k?? Why??

We cried, we hugged, we spoke positive thoughts and we vowed to do everything in our power to win this unknown battle that I was about to face. We all were about to face. Back in the car, as I pulled away, my focus needed to center on getting on the road to Richmond, VA. This was our first stopover on the way to Disney. A seven hour ride that would turn out to be the hardest ride of my life. What was supposed to be such a joyous occasion today, became a vacation that could literally turn out to be the last ever with my family.

The car was loaded…the gas tank full….the emotions were intense and with complete innocence Nick said let’s go dad! The next seven hours I drove down I95 South with tears streaming down my face. The whole time staring in the rearview mirror at my beautiful baby boy. I was contemplating the worst thing I could ever imagine. Not seeing my kids grow up. Not being there for them …as babies…as little boys.. as teenagers and young men. What I would miss. What they would miss. My wife tried to soothe me and talk positively. As worried as I knew she was, she tried her best to calm me down.

We made it to the Fairfield Inn around seven and just dropped on the bed. Nick was out quickly. I never slept, I couldn’t. My mind was racing and I couldn’t take my eyes off of Nick and Lori as they slept. How would I protect them if I wasn’t here anymore. It was 11 pm. The end of a very, very, long day.

Next Up: The Next Leg