Month: July 2020

I finally reached the end of my chemotherapy seven day cycle. The words they say, are written on the wall. I was in a pretty bad state. Extremely exhausted. My body itched terribly and my bones hurt so bad. The nausea was never ending and I could hardly get up to go to the bathroom. This crap really wiped me out.

Dr. Dave came in that morning to review my new bloodwork and explain the situation. As expected, the drugs did their job and the scoreboard showed a steady decline. A daily drop in each particular blood marker where the current trend was just zero. White cells-0, Red Cells- 0, Hemoglobin-0, Platelets-0. All other important blood markers-0. This was the initial goal. To rid my body of the affected bone marrow that was creating the Chronic Mylogenous Leukemia. The only nutrients that my body was receiving at this point were intravenous liquids and foods. Yummy. My body at this point now was in a very precipitous position. There was no infection fighting white cells left to protect me, nor red cells to enrich my oxygen. The process needed to be done quickly at this point and we needed to make sure that my brother’s bone marrow would graft to my bones and any remaining marrow in there would be overrun. It would begin to instantly enrich my body with a new selection of cells. Cancer free!

The next morning, Glenn would arrive and be admitted to an OR floor room to be prepared for an immediate ride down to have his marrow harvested. The procedure would require that he go under general anesthesia because of the amount of aspirations he would need to complete the process. Usually for a single aspiration there is only local anesthesia given. When you are donating for a bone marrow transplant, you need to access many spots to withdrawal enough marrow. Therefore, there would be just too much pain to not be put under. He would be staying overnight for observation. I felt really bad for him but this was lifesaving. I would definitely do the same for him. No questions asked. That’s what brothers do…even if I was the best looking. And taller. I thought if I had the looks , maybe I would get his brains. We would after all have the same exact DNA, like twins, and my O type blood would soon be his B type blood. Interesting. Would I also start acting like him? There was no way I was tucking my t-shirts into my jeans or wearing white gym socks up to my knees with short shorts on. Jeff would still be Jeff…and Glenn, Glenn. But we would be close. You cant get much closer than saving your siblings life. We just hope it works.

Dr Dave surprised me with the gift of yet another pre-transplant bone marrow aspiration. I think he was a bit of a masochist. I needed to be constantly giving the lab the marrow so that they could follow my progress every few days. What a joy. I lost count after a while. Ok…a moment to curl my toes and bury my nose, grab the table and here he goes! I hate you Dave !!! ” Ya ok pal?” ” Yes Dr. Dave…just wonderful.”

Lor was there, of course. I got to talk to Nicky for as long as he could hang and everyone would be coming up tomorrow with my bro…an entourage of sorts. It will be an epic day. A new life. A new beginning.

Next up: “Here Comes the Juice”

Many who know me, know that I would always be there to help. My family, my friends and my customers always came first. You have a problem, I’ll be there. How can I help? This good nature and goodwill came back to me in spades. We had so many volunteers to donate blood and platelets that some friends were put on an on-call wait list. How lucky was I!

I had rapidly begun to feel the nasty effects of such wicked chemotherapy agents as I was receiving them constantly and without abatement. I would get feverish, nauseous, itchy all over and bad headaches. Just an overall awful state of being, no way to live. I felt so weak and had to sleep a lot to get by. I wasn’t hungry at all and if I was…everything tasted like shit. Like metallic shards in your mouth. I existed on IV fluids, IV food and watermelon. Watermelon and CheeseIts crackers. The only food I could taste. Usually threw it up anyway.

In the altered state that I was in, was often interrupted by visitors whom had come in to give blood for me. I wasn’t much of a host, but tried to perform the best that I could. I really looked awful. I lost all of my hair. I was losing weight rapidly. Yuk! My sister Lisa made up the donor schedule and she really threw me a curveball this day. About 1 pm on the seventh and last day of my chemo, the charge nurse came to tell me that I had a visitor. No problem, I guess I would be able to handle them. The curtain opened and I froze for a sec. I said” What, am I dreaming”? Tears started flowing down her face. With the surgical mask on I could make them out along the side of her face. It had been many years since we had seen each other. I said “Are you lost”? LOL. She looked great. My first longterm love , my high school sweetheart…Theresa. She had found out through friends that I was very ill and in need of help. Although she was deemed unfit for platelet donation…we were the same blood type and she was able to give blood. She was so happy to see me and be able to help in some way. We spoke for the time she was able to stay there and enjoyed swapping stories of our kids and families and how happy she was in her current situation. It was a nice reunion. I thanked her and she said that she would keep in touch with Lisa. I knew she would.

Round two ….another knock on the door. This time the nurse had this big beautiful bouquet of flowers. Big! Only problem was that flowers were not allowed in the unit because of the sensitive issues the patients had with their immunosuppression. The nurse said take a good look from your bubble….and they gotta go! I felt terrible, they were so nice. The nicest bouquet in the unit in a very long time as per the nurse crew. Sooo…where did they come from? No way…now entering the room in gowned up fashion was girlfriend number two! I could see the tears coming down her face too. I must have looked really bad! Lisa was another beautiful young lady that I had the pleasure to go out with for a while. She had actually taken care of me when I snapped my ankle in half during an ice hockey mens league game. On Super Bowl Sunday! And then while in agony on the way back to my house, completely tore up the gears on my RX-7 while following my dad and I back from the hospital. The screaching sound of my grinding clutch hurt worse than my broken leg! Lisa cooked for me, took me to doctor appts. Etc. She was a great girl. I hadn’t seen her for a while either and it was nice to catch up. We were friends for many years. She also gave blood and was there to help. I felt special. It was a nice day. A tough day.

After Lisa left it was time for the true love of my life to be arriving. Lori would usually be there by 3:30. Like clockwork. She loved me no matter how bad I looked. She always looked so beautiful at eight months pregnant and always made me smile. Fill me in on my boy please! It had been over a week now since I had seen Nicky. I missed him so much. The nights got harder everyday as the pain and the hunger and the worry just piled up on me. I told Lor about my visitors and she thought that it was really nice that they were there to help. So did I. My parents would be coming down the next day and the day thereafter because my brother was being admitted in two days, early in the morning to have his marrow harvested for the transplant.

It was getting later and Lor was going to have to get going. It was so special that she was there for me every day. And Joseph. I always worried about her driving back and forth so much. She was tough though. She had to be.

So it was getting late, more Morphine, more chemo, more feeling like shit and I needed some rest, it was a long day. The phone rang and I assumed it was my Nicky calling.” Hello buddy”. It wasn’t Nick. ” Jeff. It’s Dave”. “Who”? “Dave Linsalata”.

The Linsalata family had been customers of mine since the time I had moved up to the Roosevelt Mall. Mr.&Mrs. Linsalata. Mark and Maggie, David and Cindy, their other brothers and sisters and nephews…etc. A great Italian family from the NorthEast. They became like family over 30 years. I went to their weddings…their special events and their funerals. Dave sounded very distraught. I thought maybe he was worried about me or something. No. In an exasperated tone, he said ” Cindy broke up with me!”. He was crying and hyperventilating and rambling on about how was he going to handle this, etc. This guy is 6 foot 5…270 lbs. Not one to be so vulnerable I would assume. Cindy was this petite young lady, but man did she have his number! In my very frail voice, I told him that what will be …will be. She knows what a great catch she had and there was no way that I was taking the engagement ring back! Figure it out, I’m literally dying here! I was kind of honored that he called me when he was so distressed. I could barely hold the phone or stay conscious at that point and wished him luck. Suck it up, it will be fine bud, she’ll be back…click! And I was out. What a day!

Next up: Chemo 1/ Counts 0

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As the slow drip of the two chemotherapy agents entered the clear plastic tubes and meandered their way towards my Hickman Catheter, I patiently watched and always kept on the lookout for air bubbles. Someone told me many moons ago that if air was in the iv line it could reach your brain and cause a stroke. I would have been dead already. There were lots of bubbles all the time. It helped pass the time though. Every four hours the vampire nurses would visit me to take my blood. Within the hour new numbers would be written on my scoreboard. They were dropping quick. The heavy concentration of chemo drugs surging into my veins were hammering my body and my marrow. It was the first day and it was awful. My body just ached. The nausea just got worse and worse and I lost it a few times. Ugly.

Lori got down to the hospital around 3;30. She would go in the office early so she could leave by that time and beat traffic. She would stay a couple hours and visit. Today and for the remainder of my stay, she and any visitors would have to wear a gown, hat, mask, booties and gloves for infection control. I was completely helpless against germs and infection at this point and worse as time wore on. As it got later, the pain was getting more intense as was the nausea and fatigue. These drugs were hell. Lor wouldn’t stay long and needed to get home for Nick. I needed to rest. The first evening of chemo was just awful. Dr. Dave told me that I would receive consistent doses for the week, way heavier than most patients receiving normal doses. This was intense therapy. I was trying to manage the combination as best that I could when an Angel walked in.”Jeff, I’m here to give you pain meds” Thank You!, I said many times over. Within a few minutes the Morphine was knocking me out and putting me in a state of calmness…disconnected from reality. It was so needed. The nurses came in a little while later to see how I was doing. “Where am I again”, they said I asked.

This day was like groundhog day. Repeated over and over again for six more days. The same regimen, the same drugs, the same state of mind. The pain meds took the edge off but I entered into a slight state of delirium. My scoreboard recorded the story of my life. All downhill. Every day my WBC, my RBC, my HGB, my MCW, my PLT counts dropping like rocks They weren’t kidding. I was a very sick man. By the end of the week my counts would be all zero and I’d be hanging off of a dangerous precipice. Life or Death. I honestly can’t tell you much about that week. I was pretty much out of it and in a lot of pain. A week that I want to forget. I lost all of the rest of my hair too. My eyebrows, my chest hair, leg hair…etc. My bed was such a mess.

I can say now that I fielded a few phone calls each day. I spoke to Nicky, spoke to work, spoke to my parents and Lori…and I spoke to…..

Next Up…”Dave Linsalata”

The call finally came in. “Hi Daddy”. My smile lit up the room. It was short but sweet. At only two and a half years old, the joy he brought to me was just unprecedented. ” I love you Daddy”….”Good luck”. Thats all I needed. Let’s get this party started.

Dr. Dave entered the room with his contagious smile, Jerry Garcia hair and equally large entourage. I knew what was coming next. ” Assume the position Keenan”, “You know what time it is”. This would be my fourth and his third bone marrow aspiration performed on me. We had the regimen down pat.

The first needle was small and used to numb the upper layer of the skin. The second needle was longer and heavier, used to deliver Lidocaine directly to the hip bone. Dr. T. would tap the point of the needle into the bone gently to deliver the anesthetic until i couldnt feel the needle anymore. Next up was the dangerously sharp, awl style, super thick needle with a diamond encrusted tip. Dave would use a step stool sometimes to gain height and strength advantage to be able to put enough pressure on the awl to get it through my hip bone. He said that I had the hardest bones in the world. Dave had strong hands and forearms, the rock climber that he was. He traveled all over the U.S. conquering mountains and formations for fun. This was not fun. Push, grind, push, grind….POP!! “Ok bud…we’re in”. No shit Dave. Now the real fun. The top of the awl twisted off and the diamond bit needle slid out. A tube was now open into the marrow portion of your hip bone. Then a very large hypodermic needle was inserted into the tube and into the marrow itself. Pause please…my chance to grab the top of the bed, bury my face in the pillow, and curl my toes around the bottom of the bed or table. “Ready Jeff…on three”. “One, two…three.” He would slowly draw up on the plunger trying not to go too fast. The thick marrow would fill the large syringe body until it was full. There was no anesthetic inside your bone. The pain as the needle drew upon the marrow was so intense that I often compared it to sucking your testicle through your nose!! It was just awful. Just horrible. An experience you’ll never forget. The needle is withdrawn and the large amount of blood created drains out of the hole and then plugged up with a compression bandage. Then another one. Very unpleasant. The team was just getting started.

As soon as i could catch my breath the Chemo nurse, as she was called, showed up to begin my first treatment. Two bags of poison today, then two more tomorrow, and each day thereafter for a total of six days. The drugs didn’t look as ominous as I thought they would. Just normal bags of fluid. This was nasty stuff, Dr. Dave told me. Also, that I would be watched twenty four hours a day. Round the clock. Side effects would be apparent and intense. I would be given an amount of chemo strong enough to destroy my immune system and all of my bone marrow. Done effectively, I would technically be brought as close to death as I possibly could be. This by the end of the week.. The bags were hung and the lines attached to my Hickman Catheter. I watched them be attached to the IV machines and then the release of the drugs into my body. It’s official. The show has begun. I am the star. Let’s turn on the TV, get me some pain meds, and leave me alone. I need to process the situation and see what follows. Its not going to be pretty. I looked at my rock… ” Never, Never, Quit.” Never happen… I’m in it to win it.

Next up: Where am I ?

The first night in the Transplant unit was a real eye opener. Literally. Besides trying to mentally prepare myself for the next day, the ability to sleep was almost non existent. The nurses and 15th floor personnel were constantly on the move. In and out of rooms, changing IV bags, tending to patients needs and wants and implementing doctors orders. All night long. Then there were the patients. The moaning and groaning of cancer patients in pain and discomfort is something you never want to hear. Calling out for help in the middle of the night. I didnt think that I would ever get used to something like that. Would I become a part of it? I guess time would tell.

It was my turn about every three to four hours. The nurses really did try to slip in and out quietly. It didn’t help. Plus, I was a side or stomach sleeper. I would have to learn to sleep on my back until I got used to the catheter. I had two poles and a double tree of chrome arms hanging over my bed with a plethora of tubes and fluids bags hanging and connecting to my catheter. I would become well versed in the continuous flow of the various times, schedules and types of drugs being delivered to my room and my system. The constant visits to my room also included the drawing of blood to accurately account for my various CBC markers. Unfortunately, this was not able to be done through my chest catheter too often. The phlebotomists would have to poke me a lot. It really, really, sucked.

So, I made it through to the next morning. I probably slept about three to four hours. I would learn to nap during the day. That helped, somewhat. “It was going to be a long two months”, I thought to myself. I couldn’t wait for the morning call from Nick and Lori. I wanted to hear my little buddy’s voice, Lor too. She would be coming down to the hospital a lot for the first week or two. So would my parents and family. My sister Lisa would be coordinating a blood and platelet drive for those essential fluids. Donations by friends would be so important. I would then not have to draw those greatly needed life saving elements from outside blood banks and sources. Her job and the response were overwhelming.

It was still pretty early in the morning. I just had to peer through the window blinds. The ever present Inquirer clock tower wasn’t going anywhere. Six Thirty AM and I knew a couple of things. One…Dr. Topolsky would be coming in with his big ass needles to give me another bone marrow aspiration. Two…I was going to begin my first day of chemotherapy. And Three…Things were never going to be the same again.

Next Up: Chemo…Chemo…Chemo

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.