Category: Uncategorized

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

At this point I was settling into a routine that would be continuing for a long time. Sleeping in, eating what I could tolerate, weekly appointments to the hospital to check my counts and spending as much time as possible with my boys. It would be a very long and tenuous recovery. My store was getting ready for the upcoming holiday season and I was Quarterbacking the situation the best that I could from home. Not an easy task but there was no way that I could expose myself to the public yet. It would be a while.

One morning towards the end of October, I woke up feeling very strange. The right side of my torso had become very sore. No clue why. I figured that maybe I had pulled something or slept on it weird. It was nagging me all day. Of course, every little new malady was a concern to me. I didnt know what to expect during my convalescence and recovery from the Bone Marrow Transplant. Should I call Dr. Dave? We’ll wait and see. I went through the day as usual helping Karen with the boys, sleeping and resting, taking my multiple array of medications, etc. Lori got home from work and I let her know about the nagging pain that was worrying me. She advised me to wait it out a little more and see how it goes. Hopefully it will subside and all would be well. Good luck.

With little fanfare, we were able to get the boys to sleep and Lori and I as well. Early in the morning I was hit with intense pain in my right side. Like I was shot! The pain was so horrible I couldn’t handle it. Now, I was scared. What the hell was going on? I had a horrible rash and blisters forming. From the front of my right rib cage all the way around to my spine, a searing pain and ugly array of sores. It was awful. Now, the call had to go out. Dr. Dave said to get right down to Hannahmen ASAP! Could this be a major outbreak of GVHD?

I could barely get dressed. The pain was so intense. We waited for Karen to get there and took off for the hospital. Dr. Dave saw me immediately and knew the deal right away. He said that it was not GVHD, but that my immune system was so low that I had developed a severe case of Shingles. He explained that the Chicken Pox virus always remains dormant in your body after you’ve had it and in extreme cases of low immunity the virus exposes itself in the form of an extremely painful blistering rash that can be small in area or very large as in my case. Not only was my immune system severely compromised at the time, the transplant had erased all of my vaccinations. I was scheduled to receive all of my vaccinations again including the currently available Chicken Pox. Too late. Lucky me though. Seriously. It wasn’t GVHD. But it really sucked. This would be my first introduction to Percocet. Thank God. How many can I take please! I would need to be on an immediate long term course of Antibiotics to try to curtail the virus and not make me have to go back into the unit. Hopefully, this would work and relieve me of more angst and worry. I would again have to steer clear of my boys and anyone else. Another painful episode in the story of me.

It took a few weeks for the Shingles and their pain to go away. But not the memory. Every time that I remove my shirt and look in the mirror, besides seeing a chubby handsome guy, the deep scars from the blisters still prevail across my rib cage from front to back. So be it. I was due for another Bone Marrow Aspiration my next appointment anyway. Bring it on Dave.

Next up: November and Dr. Styler.

The monotonous day to day of laying around and watching TV was really getting to me. I was starting to get stronger and eating more regularly. It felt good to finally feel good. Well… a lot better than I had. I’ve had a few other appointments with Dr. Dave since the Flyers event and my bloodwork has steadily improved and my weight slowly gaining. It had been four weeks now since I have seen my boys and this was just too long. It was time to go home. Dr. Dave agreed.

Lori had our bedroom all set for me and everything set up for my ongoing recuperation. Everything had to be sanitized, no fresh vegetables in the house as well as any other items that could compromise my condition. I was so excited to be able to be with my family again. Three months was just way too long. My Dad and Mom were going to be taking me home on Saturday, just two more days. They did such a great job helping me out. My in laws did a great job at our house helping Lor too. And thank God for Karen! Karen Garlick was just phenomenal! This young lady helped us take care of Nick since he was a baby and now both boys. Nanny extraordinaire. At this point, I don’t think she knew what she had signed up for. Dedicated and dependable, we could always count on her. She would be so important to the ongoing situation in our home. Karen, thank you for all you did for us. You are amazing. Now, time to get home.

Saturday came and I was ready to go. Packed up, in the car, on our way. Nick was so exited when I got there. I hugged that kid so hard I could have crushed him. After I finally let him go, probably like ten minutes, I got to hold my littler guy. It was the first time I held him since he was born the month prior. So small and beautiful he was. He had grown so much in one month though. It was a very emotional and overwhelming moment for me. I had survived a lengthy, horrible, painful, debilitating operation that took me away from my family for three months. It tested me to the limits of my existence and challenged my body and mind like nothing you can imagine. No matter what Leukemia threw at me though, there was no way it would take me from my boys. There was a long way to go though. It started now. I’m home, I’m stronger, I’m alive and I am ready to live! I would be eating dinner with Lori and the boys tonight. Just us. It would be glorious. Even if I still couldn’t taste anything yet. I got to help Lor put the boys in for a nap. Feed little Joe a bottle and lay him down to sleep. I couldnt wait to be their Daddy again. I slipped into the bathroom, my bathroom, to take a shower and decompress. I’m not ashamed to say that after I shut that bathroom door and turned the water on, I lost it. These were long awaited tears of joy. Tears of pain. Tears of fear. I knew that I was a strong person. I knew that I could keep going. Keep fighting. Keep improving. And keep loving. Loving my family so much.

Time to get ready for dinner. To get the boys up and ready at the table. To sit with my amazing wife and enjoy so much an everyday normal practice. Eating a meal, in my home, at my table, with my family. We laughed so much and Nick filled me in on all that I had missed. He was such a smart kid. Joe, not so much. At one month old, he wasn’t big on conversation. Lol. And finally, after dinner, I would be sleeping in my own bed for the first time in ninety days. Next to my beautiful wife. Hallelujah! But , Wait…its 2 am. Who’s crying ? Do I really have to get up and take care of Joey? Damn right! I got this Lor. My pleasure. Hey little guy…how about a warm bottle and a smooth rendition of The Carpenters …”Close to You”. ” On the day that you were born the Angels got together….”. The perfect song. Worked every time. Goodnight buddy. A kiss for you, a check on Nick and a kiss for him. Goodnight, let me get some rest.

Next up: Feeling like I just got shot!

My appointment ended with good results and a sense of accomplishment. I was weak but coming along as expected. Dr. Dave was pleased with my progress. Enough with that…let’s go meet the Flyers! Dr. Dave would be the MC for the day. He was very excited.

The office waiting room was cleared out and set up for the event. Mostly fold up chairs with a podium at the front. I recognized many of the players. As I wrote before, hockey was a big part of my life. A passion of mine since I was nine years old. My Dad took me to my first game ever… Flyers vs Minnesota North Stars..1969. I watched the North Stars Goalie, Gump Worsley, take a slapshot right to the forehead. Goalies didnt wear face masks yet. Idiots. Passed out flat on the ice, blood everywhere. I was hooked. My Dad and I took up a spot halfway from the front now along the window wall of the waiting room. I had a baseball cap covering my bald head and a surgical mask across my face. There were maybe fifty people there including two other Leukemia patients that I recognized from my appointments. After the meet, the Flyers players would gown up and head to the unit.

Terry Murray, the Flyers coach, along with many players from the team were there. Eric Desjardins, John LeClair, Michel Petit, Chris Therein, Danius Zubrus, Mikael Renburg, Vinny Prospal, Rod Brindemour and many others. They looked so young. Dr. Dave opened up the day with a welcome and a speech that opened the players eyes to the research, treatment options, costs, patient outcomes and the overall operations of a cutting edge cancer center. Pretty good showing Dr. Dave. He had a few of the other Doctors speak along with some of the administration and big donors to the center. Then he stuck it to me. ” I would like to introduce you to a fellow hockey player and our most recent graduate from the transplant unit”. ” Come on up Jeff”. Holy shit.

He didn’t warn me. I wasn’t prepared to give a speech! I looked awful! So, here goes nothing. I looked out at the room and began to speak. I thanked them all for coming today and how much it means to everyone there that they use their time and celebrity to further the cause raising money, awareness and support for the Leukemia Society of America and the Barry Ashbee Center. I told them that besides not being able to see my family while I was recuperating, that I missed being on the ice so much. Dr. Dave stepped in and guaranteed me that I would be ready for the next season. They all clapped and shouted encouragement. “Thanks Dave”. And then I hit them. I said, ” Never take for granted every second that you get to be on that ice. You are some of the best players in the world”. ” You’ve worked hard and prove yourselves every game. That talent is a privilege that most of us will never have or know”. “As a player most of my life, I respect you guys so much, its a tough game. For me, I wish every day, that sooner or later I will be able to lace my skates up again and play the game that I love so much”. Bam! There wasn’t a dry eye in the room. They were all crying. Big babies. A very emotional moment. I held back my tears the best that I could. Dr. Dave gave me a hug as the players and attendees were all standing and giving me a heartfelt ovation. I made my way back to my spot along the wall with my Dad and sat down on the chair. Rod Brindemour, the current coach of the Carolina Hurricanes, came up to me and gave me a big hug. He leaned in and said ” Great job bud, I know you will be out there next year kicking ass”. A bunch of other players came over to shake my hand and offer their best wishes. We got some autographs and mingled some more before the guys had to head to the Bone Marrow Transplant unit. It was a good day.

Next up: Heading Home

After the excitement of the terrible weekend flooding had passed, the monotonous recuperation period continued. On Monday, a visiting nurse arrived to check out my condition, vitals, catheter site, etc. Everything was coming along and rest was the best medicine at this point. I still wasn’t able to see my boys. The transplant posed an unusual situation in that after receiving the chemotherapy necessary to eradicate my marrow, every vaccination I had ever received became void. I would have to be given all new vaccinations for Measles, Mumps, Chicken Pox, Tetanus, etc. In addition, Joseph would have to receive all of his newborn vaccinations in the dead form. Very unusual for the times. Live vaccinations would expose me to those viruses when I was able to go home since it would be approximately six months before I could start my new regimen. Another reason for the quarantine. I had to go see Dr. Dave in a few days for my next appointment. There was much to discuss.

At this point, I was twelve days post transplant release and four days post release from my second stay at the ranch. I still looked the part of the prototypical cancer patient and sure felt that way. My next appointment would let me know how things were going. The day before the appointment I received a call from Dr. Dave’s office to ask if I would be able to stay after for a special surprise. The office would be closing early at 12 noon and I was asked to attend a luncheon afterwards. Interesting.

The morning of my appointment, my Dad and I made our way to the hospital with a drive that was all too familiar and tedious as the traffic always sucked. The office at I. Brodsky and Associates was buzzing! There was excitement in the air and the staff was moving the morning patients in and out quickly. The routine saw me seated in the hall where Leslie, the blood sucker/Phlebotomist, would take my blood. This was a first for me since my catheter was gone. I needed to be stuck every visit now. I would get to know Leslie very well. Next, to the scale. Ok then, 142 lbs. Progress made. Moving on to the exam room, one of about fifteen past the outpatient chemo rooms and lab. More vitals and some questions from the Oncology Residents and then the obligatory “Yo Keenan” from the doorway… Dr. Dave announcing his entrance. Such a happy guy all of the time. An appropriate facade, designated to fill you with comfort and hope. I don’t know how he kept it up with so much misery around him everyday. He was pretty good at it though. Today, he was especially upbeat. Our discussion led quickly to his thoughts on my returning home to my family and my recuperation going forward. As long as I continued to improve and progress as I was doing, it wouldn’t be much longer until I could see my boys and be sleeping in my own bed.

The office of I. Brodsky and Associates was also known by another name. “THE BARRY ASHBEE PHILADELPHIA FLYERS FIGHT FOR LIVES LEUKEMIA CENTER”. This named for Flyers All Star Defenseman Barry Ashbee who was diagnosed with Leukemia during his career with the Flyers. Unfortunately, it ended his career and he succumbed to this insidious disease. The Flyers organization has sponsored the office and the fight against all forms of Leukemia since. The ” Flyers Wives Fight for Lives” organization holds an annual carnival at the Philadelphia Spectrum, now the Wells Fargo Center to raise money for all charities involving Leukemia. Every year since the inception of the charity, the Flyers organization would have a contingency of staff, players and coaches come down to the Ashbee/ Brodsky office for a day and visit with many of the patients currently enduring treatment in the Bone Marrow Transplant unit. A chance for the young players to see for themselves how devastating and difficult the procedures and disease itself were to the patients fighting Leukemia. The reason that they participated in the carnival and whom they were helping. Also, to justify the precious free time they were giving to the cause. Eye opening for these young athletes to say the least. Also, a pick me up for the very sick patients and the hard working staff who lovingly and diligently man the front lines fighting Leukemia. AND… TODAY WAS THAT DAY!

Next up: Meeting the Philadelphia Flyers

It was Friday morning and Dr. Dave came in early to let me know that I would be getting the hell out of there. This was great news since I was so tired of this place. I just needed to let my parents know that I would be coming home. My blood counts were stable, no fever and no major GVHD issues. All was good for the time being and I felt somewhat ok. I was still having issues with eating, my mouth was very tender with sores and everything still tasted horrible. This was the norm though. Watermelon, Honeydew, Canteloupe and Goldfish crackers. The chemo diet. Lol. The only things I could taste. The Hickman Catheter would be removed this morning too. Hallelujah! No more cyclops coming out of my chest! The surgical team would be in soon to take care of it, no special surgery would be necessary. Freedom…again, with a big hole in my chest.

Everything went as planned, catheter removed without incident and I was ready to go. It was so easy to get dressed now! Around late afternoon my ride…the wheelchair, picked me up and we made our way out to the fresh air. It was not such a great day weather wise. The sky was dark and a storm was brewing. I still wouldn’t be able to see the boys. My immune system was very fragile, as was my physical condition. It would be a while before I could go home. So, it was back to Fort Washington to quarantine and continue to recuperate. Back in my room at my parents, it was time to rest. Another long day in the books.

The next morning, the ominous black skies that had presented themselves the afternoon before, were starting to unleash their fury. The rain was coming down in buckets. The area of Fort Washington where we lived was on a major down slope where all of the homes on our side of the street actually looked up to Dreshertown road. Dreshertown road was a curvy drive that on the left side, going towards our house, you looked up at the homes along it. The right side you looked down on the homes. At one point, not far from our house, there is a deep sharp curve where the right lane has just a guardrail that drops off to a deep slope below. My sister Lisa had ventured out that morning to the Willow Grove Mall to the Barnes and Noble store . The store sat by itself outside of the mall, a great escape to relax and grab a book, read, etc. I made my way downstairs to the kitchen hoping to eat some breakfast. It was always a struggle but I was so hungry. Lisa’s boyfriend at the time had come by to hang out and was waiting for her to get back. The storm raged on.

The forecast had called for heavy rain. It continued to get worse and Lisa called to let us know that she decided to wait out the torrents that were pummeling us at the moment. It just went downhill from there. Flash flooding was occurring all over the Delaware Valley, especially in our area. So bad that the parking lot around Barnes and Noble started to cave in around it. We had no idea that this was happening. Lisa decided to make a run for it fearing that her car would become a casualty like others being sucked into the crumbling tarmac. She called to let us know that she had made it out and was on her way. At home, my parents were frantic as were Scott and myself. I was sitting on the step leading from the kitchen to the den when the call came in. Watching the local news channels that were updating the flooding, the den television was spewing stories of overflowing creeks, rivers and inundated roads everywhere. My dad’s cellphone rang. Lisa was screaming on the other end. I will never forget that moment. She was trapped on the curve of Dreshertown road, literally one minute from our house. The water was cascading down the left slope and was flooding the roadway so quickly that she had nowhere to go. The road behind her was starting to cave and her car was trapped against the guardrail. The water was halfway up the side of her car. A life or death situation.

The screams coming through the cell phone were horrific. Scott flew out of the house and jumped into his car to try to get to where she was stranded. My dad was keeping her on the phone and trying to keep her calm although we were all freaking out. I got up and went upstairs and got my sneakers. This was my baby sister. I had to go out and help her. As I sat on the step again, I struggled so hard to get my shoes on. The phone went dead. The rain was pouring down. I couldn’t move. I physically could not move. My body was too weak. I tried to stand up but for the first time in my life, I felt completely helpless. Helpless. Too weak to do anything. My little sister could be drowning and I was in such bad condition that I couldn’t help. As soon as the phone went dead my Dad flew out the door and all that I wanted to do was help. There were so many bad times for me during this journey. This ranks as one of the worst. As my Dad was flying up the driveway, my sister came flying in. She made a decision that would save her life. She floored it. Luckily the water hadn’t reached the engine yet and in a moment of desperation she just floored it and plowed through the flood before it was too late. This was too close. Distraught was mild to say the least, we all were. The whole ordeal only lasted about five minutes. An insane five minutes of terror that felt like forever. But now, where was Scott? He wasn’t answering his phone and Lisa didn’t pass him on her way. He came in a few minutes later, obviously very emotional like the rest of us. He was drenched but so relieved to see her car when he pulled back in the driveway. He couldn’t get through the flood and couldn’t see her car so he pulled up a side road and ran through the houses to get to her. By the time he got there she had pulled through, so no car. He said the road was completely full at that point and he was thinking the worst. It was a valiant effort on his part, but this was my job. I should have been out there saving her. I would have been out there. To feel so helpless when someone you love so much needs you is a terrible thing. Probably how my family was feeling about me.

This excerpt is sadly written in honor of my friend Big Billy B. He lost his battle after a few short years to cancer this week. Too young, too fast, two young children. Very sad. He fought his cancer very hard. He was such a great guy. Rest easy bud.

Next up: A Special Trip to Hanahmen

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The next few days in the Cancer ward were pretty unceremonious. No sleep, docs and nurses in and out, a few family visits and phone calls with the store, Lor and big Nick. After all, I had only seen Nick twice for about an hour and our new baby Joe only for an hour after he was born. I needed to get better. My blood counts were increasing again with the therapy given to me as well as the lowering of my temperature through the antibiotics. The trend was positive so far. Hopefully, by the end of the week, I will be headed home again.

While I was recuperating in my room, Dr. Dave came by and we had a long discussion about the reason that he kept me in the hospital and could continue to bring me back. GVHD… Graft Versus Host Disease. Dave had mentioned this before in our initial consultations but we would now delve into the dangers and importance of this phenomenon. GVHD was a two pronged sword. A natural and necessary byproduct of a Bone Marrow Transplant. As much as you needed to get it, it could also kill you. It needed to be managed carefully although there was not much control that you could have over it. Disconcerting to say the least. So what is GVHD?

As defined by Explore cGVHD… “Graft Versus Host Disease is characterized by a combination of tissue inflammation and fibrosis, which manifests itself across multiple organ systems”. “Fibrotic lesions can develop across multiple organs where Fibrosis is a major contributor to life threatening complications and significant morbidity. Patients can develop multiorgan manifestations, including skin, mouth, joint, eye, GI tract, esophagus, liver and lung manifeststations”. In layman’s terms in regard to my own personal case, I needed to get GVHD as a means of destroying any original remaining bone marrow while allowing my donor marrow to proliferate. The fight that occurs inside my body between the donor DNA and my own DNA has to be somewhat significant as the original DNA will try to grow back. That fight is the premise and cause for the Graft- the donor marrow VS the Host- my marrow. This must occur, but the degree of occurrence enables the outcome. The Host DNA must be obliterated with no ability to return. Got it so far? It is pretty interesting.

Bottom line was that I needed to get GVHD. It could be mild to almost no GVHD. This was not what Dr. Dave wanted. With very little or no GVHD the transplant could revert itself leading to almost certain relapse. It could be slightly aggressive but manageable. This would be the best case scenario. A manageable case would be uncomfortable but offer the result most likely to afford me a successful lasting cure. Lastly, it could be very aggressive. This would be bad. Uncontrollable GVHD would most certainly lead to prolonged disability or death. This discussion with Dr. Dave was more enlightening than previous but most necessary. He would be watching me very carefully as we discussed the symptoms and signs of GVHD progression. The anti rejection drug that I was taking also played a huge part in the outcome. The dosages had to be conditioned to allow for the occurrence of GVHD to the extent that it would be conducive to a successful transplant and make sure that my body accepts the new marrow. This drug along with large doses of steroids would be the course for now. GVHD symptoms can range from skin rashes to joint issues, Ocular dysfunction and Lung function impairment. The latter resulting in significant morbidity. It could also lead to significant psychological distress. Chronic GVHD could also result in disability which could make returning to work at least two to three years or more a reality.

Ok, Dr. Dave. Such a wealth of information he was. I guess that’s why he was the best. He never pulled any punches. Like me, he believed in the reality of a situation. You can sugar coat any opinion, belief, story or situation, but reality is always what it is… the truth….like it or not. I was glad he was my doctor. He kept me informed no matter how bad the reality was. This was a nasty fight. Round 1 was getting through the diagnosis. Round 2, the actual transplant. This was Round 3, surviving the aftermath. Dr. Dave was Mick. The Manager, Trainer and Cut man. I was Rocky. Being Rocky sucks. Round 3 sucks. They all sucked.

Next up: Helpless

Let’s get back at it!

What a difference! The post op general cancer step down unit was no Ritz Carleton. I was used to the 5 star treatment in my bubble. The transplant unit nurses were specially trained to handle the needs of these oh so special patients. A virtual white glove experience, hospital wise. Now only five days removed from that unit, I was back in unfamiliar territory….with a roommate! Human interaction other than hospital personnel was a real change of pace. I’d rather be in the bubble. So whats the story?

I was not well. My temperature was hanging in the 101 to 102 range. This was not good. Dr. Dave came in to explain the situation. After the initiation of my transplant, I began receiving a drug called Cyclosporine. I would be on this drug for at least a year. This was one of many maintenance drugs that I would be taking, but the most important. I received it intravenously while in the unit but at home it was delivered orally. It was not only a dreadfully tasting concoction, it was also very harsh on the body. Cyclosporin was an anti rejection drug. A Bone Marrow Transplant is considered like any other transplant, heart, liver, kidney, etc. Anti rejection drugs are needed to help the body assimilate the foreign organ into your body and help it to blend and thrive as your own. In addition to the wild weekend that I hadn’t expected, the new drug was very harsh on me. Not only was my temperature high, a sign of infection, my blood counts had also dropped to levels that were conducive to even more injury. The worst fears the doctors have are blood infections, pneumonia, heart issues and something called “Graft Versus Host” disease. To contract any of these issues while my immune system is so compromised could easily lead to my demise.

Were we scared? Yep, very, very scared. Again, hooked back up to the IV pole with multiple lines to bags of, well, lots of bags. The Hickman Catheter was again working overtime. I still had a terrible time trying to eat and get nutrients into my body. I knew it was going to be a very rough night. Lori came after work to see what was going on and then left soon after to get home to our babies. We were so lucky to have the help from our families. The uncertainty was so hard on everybody. My roommate was actually the father of another Jeweler that worked in town. He also had a form of Leukemia but was in his early sixties and had just been operated on. Nice guy but neither of us were great company. It would be a rough night to sleep. So much going on all of the time. Nurses in and out constantly. I really was feeling like shit. Very anxious too. Dr. Dave was very concerned and told me that the antibiotics they were giving me would hopefully handle the fever and additional transfusions of blood products the other situations. I would stay in the hospital at least another five days. So basically, 56 days in the bubble, four days of freedom and now six days maybe or more… on the Cancer floor. Not a happy camper was I. Let’s see how it goes.

Next Up: “Graft Versus Host Disease”