My 26 Year CML Leukemia Adventure

Back in Doylestown, I had a month to prepare for settlement on the Florida property. The first week in May, I would return to Bradenton to complete the process. There were so many things to do before I left. Business was rolling along and the boys were doing their thing. All was good. In addition to the Florida activity, I had begun negotiations to rent a store inside the Quakertown Farmers Market. Not enough going on right? I was busy! A good friend of mine, Bruce Snyder, was a mortgage magician. Already handling several mortgages for us, Bruce knew how to handle the intricate processes involved in dealing with self employed applicants. The whole ordeal can be very stressful especially for a second home. With all of our approvals in hand and inspections complete, I flew back into Tampa and made my way down to Bradenton.

Donna Rogers, my realtor, was eager to meet me the next morning to complete the walk through inspection. What a great property! I couldn’t wait to get to the Remax offices to sign the papers. The place looked great and away we went. Lori had to give me Power of Attorney in her behalf to complete the paperwork so I had to sign both of our names. I thought my hand would fall off! It took about an hour to complete everything since the seller lived in California but it was well worth it. Fairview Terrace was ours!

I was going to be in Bradenton for three more days and had to get moving with my plan. Donna had hooked me up with some handymen that did work in the area. They would be meeting me that afternoon to give me an estimate for the renovations that we wanted done. New tile floors in the Great room, painting, ceiling fans throughout, etc. They would accompany me to Lowe’s as I picked out and paid for everything, then loaded their truck up with all of the goodies. They were great. We discussed the job at hand and I ended the day with a trip to Walmart to purchase an air mattress and some snacks to put in my new fridge! No more hotels for me. I’m sleeping in my own home tonight. My Florida home. I called Lori and took in the moment that evening of how blessed we were to get to this point in life after all that we had been through. Wow.

The next morning, the guys showed up to start working and I began taking measurements…of everything. And pictures, lots of pictures. My plan was to furnish the entire house with furniture, household items, knickknacks, pictures, linens, etc…. from Doylestown. As soon as I got back, the adventure would begin. I left the house in good hands the next day and headed home. I would have about six weeks to buy everything we needed. The return trip was already planned and time as usual would be of the essence. Let’s get it!

Next up: 22 Hours In A Uhaul

So while we were getting through the Christmas of 2011, trying to recover from the recent robbery, my focus was down South. I had been on a one year quest to find the perfect spot for a Florida vacation home. It was time to plan for the future. An affordable, and the timing was perfect, home for Lori and I to enjoy as we began at some point to retire. A winter escape to the sun and warm waters of the Florida Gulf Coast. Nestled between Tampa and Sarasota, the undeveloped area around the town of Bradenton lured me in. The development I narrowed my search down to was a decent size, but not too big. It had two championship golf courses, Olympic size pool area, tennis courts, gym, beautiful clubhouse and restaurant and a beautiful hidden pool just a short walk from the condo I wanted to buy. There were single homes, town homes, garden condos and three story condos. Here we go!

April of 2012, I boarded a plane to Tampa on a Thursday. My plan was to drive to Bradenton, then spend one day with an agent that I hired on Friday. Donna Rogers was a middle aged stunner with a heavy…HEAVY…Boston accent. She lived in the development with her husband for several years and knew her way around. We would visit three garden style condo homes in the same general area in Tara Golf and Country Club. I already knew the one that I wanted. Donna saved that Condo for last. 1500 square feet, 2 bedrooms, 2 full bathrooms, large living and dining area and great kitchen. Also one car garage and custom Lanai that looked out on to the beautiful 4th hole over a large pond on the Golf course. A perfect location and view. I wanted it. The owner had passed and had only one heir, her son in California. It was Friday afternoon and we wrote a real low ball offer. The home was only up on the market for 10 days. Donna thought that I was nuts! I told them I needed an answer by 12 pm Saturday morning.

I parted ways with Donna and proceeded to the Bradenton waterfront for a great dinner and to call Lor to fill her in on the day. Back at my hotel room, I couldn’t sleep. It was nerve wracking. The next morning I got the call from Donna…11:30 am. He countered. Ok, here’s mine. Last offer, answer by 12. I’m moving on to the runner up property if they decline. It was a fabulous price. Fingers crossed. Gotta play hard ball sometimes. 11:59… You got it! We finished the agreement of sale that afternoon and Sunday morning I was on the next flight to Philly. Mission accomplished. I’ll be back in 30 days to settle. Can’t wait!

Next Up: It’s Ours

As I drove down the Pennsylvania turnpike, at a very high rate of speed, my mind was a whirlwind of thoughts and scenarios. The only words spoken by Nadine so far were “We were robbed!”. Was anybody hurt? How are my employees? What was taken? Did the police catch the robbers? A mile a minute. I had to get there.

The police activity was crazy. I walked into the store. Many officers were taking pictures, processing fingerprints, collecting evidence and watching the video recorder that was hidden from view…good move Jeff. The one perpetrator tried to tear a broken VCR dummy tape out of the visible dummy player that was put there for that reason. His frustration had him pull the unit out of the wall and carry it out of the store upon his getaway. Let’s get to the story.

A beautiful brisk sunny day was November 4th, 2011. A kind gentleman, dressed nicely, was buzzed into the store. Nadine asked how she could help him and he countered by drawing a 9mm semiautomatic pistol on her and vaulting the counter, then buzzed his accomplice through our gate. Two middle aged men deciding to rob and terrorize my employees that day. Racking their guns and letting rounds eject out of the chamber, luckily no bullets were fired by these animals. The original gangster opened my office door and leveled his firearm directly at my 21 year old employees head. What a piece of shit. He instructed her to disarm the camera system and then lay on the floor in my office. Luckily, she knew not what to disconnect. Nadine and my Jeweler “Tha” were also told to lay on the floor while they zip tied their wrists. The big boss had a hefty bag and began clearing out jewelry cases in the front of the store. The other clown started clearing out our office safe and antagonizing my crew. Then…a savior! A customer came in the store and saw that we were being robbed, ran out, and called the Police. The loser in the front of the store ran back in to the office and said “let’s go!”. The other loser tore the old VCR out of the wall and the two vaulted the cases and ran out the front door. My younger employee had dialed 911 while her hands were tied and Nadine was able to hit the hold up button to alert the alarm company.

While the thieves were making their getaway, an off duty officer saw what was happening and took off after them while his wife talked to Philly PD dispatch. Their wild chase ended in the officer losing the perps during a high speed chase that became too dangerous to continue. Back at the store, I made sure everyone was safe and everyone was escorted to the 2nd District to be asked questions pertaining to the robbery. I remained at the store with the other detectives to finish up and get the store in condition to close for an extended period of discovery and inventory taking. I went home that night and thanked God that no one got hurt and thanked Nick for having me away from the store. It could have gotten ugly if I had been there. The next few days, we had to do very intensive inventory to try to make the insurance company happy. It actually took two months to finally come to a proper count and dollar agreement, as far as they were concerned. My number was $154,000 in loss of inventory. They settled on $65,000. Not very fair. That’s the way it goes after paying so many years of high premiums. Oh, well. What else is new.

We waited two months with no reports from the Philadelphia detectives. I was contacted by Action News Crime Busters to see if I wanted to have the story highlighted on the 6 pm and 11 pm news. So…I had to put up a $2000 reward for information that leads to the scumbags capture. The next day, the Robbery was front and center on CrimeStoppers with the video, plain as day, of the perpetrators and the $2000.00 reward for information to the arrest of these two asses. Within one week, they were captured in North Philadelphia and arrested to face Federal charges of 1st Degree Robbery Committed with a firearm. Minimum sentence 10 to 15 years in Federal Prison. It only cost me $2000.00 plus the $89,000 in unrecoverable assetts and the innocence of my employees who wanted just to be kind humans and help people with their jewelry needs. Just awful. These fine gentlemen also knocked off several Radio Shack locations, a few gas stations and fast food restaurants. Real nice guys. Their own mother probably turned them in for the $2000k. Wouldn’t doubt it.

I wrote a letter to the Judge on the behalf of my employees. About the mental duress and anxiety they were experiencing caused by the actions of these animals. It was to the point. No mercy and well received. The two were sentenced for the crime and received 10 plus years each in Federal Prison. They were also directed to pay me reparations for the unrecoverable merchandise. Basically all of it. I never received a dime. I figured that anyway.

We really had to pick it up now and resupply for the Christmas season. It took a while to get paid by the insurance company and then I would owe a lot more to the vendors for the loss that the insurance company didn’t cover. I then have to buy more jewelry from them to replace the stolen inventory. It was tough going for a while but it is what it is. I’m used to tough times in business but now my business would never be the same. This was different. What a shame…Innocence lost. We’ll get through it though. Ho Ho Ho…bring it on Santa.

Next Up: Flying to Bradenton

April 2011… Nick was dressed up and ready to go. The party busses were booked, the girls dresses ready and Nick’s freshly purchased black tuxedo was ready for duty. He looked great in it. It would do him perfect for the six Senior and Junior proms he would attend. Nick was handsome and popular at Ghost and many sister schools. The proms were scheduled conveniently so there would be no problems with any overlap. A little grueling though the schedule. Joe was entering Archbishop Wood in the fall as a sophomore. Hopefully it would be a good experience. He would play hockey there also and as usual become controversial with his skill level and the issues that usually follow. That became more evident when his U16AA Midget coach Jodi Crane told us about the Philadelphia Revolution Jr B and C open skate in a few nights. “You should take Joey”. Why not? Junior teams started at age 18 to 20 years old. Joe was 14 at the time. Joe was up for it, of course, and hit the ice with about 50 to 60 skaters that were 17 to 20 years in age and some pretty big boys, comparatively. I tried not to watch as there was a lot going on and I knew that he could handle himself. About 20 minutes into the skate I had the Jr B and Jr C coach searching for me. Are you Mr. Keenan? Is that your son Joe out there? How old is he? 14….I said. They asked me where he played, positions, etc. They wanted to sign him to a contract for the season, that night. First player of the season. If he wanted to. 14 years old. He would turn 15 at the start of the season. He wasn’t intimidated by the size, he had the speed and skill to compete. After the skate, for the first time before a tryout, Joey was signing an Empire Junior League hockey contract for the Philadelphia Revolution. Before tryouts! Confidence? You bet! The team needed to get special permission for him to play, through USA Hockey, at 15 years of age.

Both boys finished out their school years. Nick would soon become a Senior at Holy Ghost and Joe a Sophmore at Archbishop Wood. Nicky went to work down on Long Beach Island for the summer and Joe and I traversed the arenas of Boston, Buffalo, Michigan and Jersey while Joe played for tournament teams. His first Junior game in Boston that summer, against the South Shore Kings, he scored the first goal of the game and had his first Junior celly. He then went and scored the second goal! He decided his celly would be to high five the players on the other teams bench as he skated by. Not good. His coach had to sat him the rest of the game. First, to teach him a lesson, and second, if he put him out on the ice it would be an immediate fight with a big 20 year old dude. So he sat….Until the last shift of the game. The coach told him to go. Joe went over the boards like a rocket and immediately crushed a South Shore player, picked up the puck, took off and fired off a shot. Immediately, he was hit by a big defenseman who tossed his gloves and lined Joe up. He couldn’t run or back down now. Time to take a beating. As the punches flew, Joe was holding his own, no blood and an ovation after the melee. Two goals, and his first fight. Not a bad first game as a Junior hockey player.

So the summer of “11” I had two Juniors technically And a sophomore. Nick had decided to use his fancy Prep School education and major in Dentistry. He settled on a great University in Upstate Pennsylvania called Wilkes University. Wilkes was a partner school with Temple Dental School. The two schools Dental school collaboration was one of the originals in the state and offered three intense years at Wilkes then direct admission to the Temple Dental School. A fabulous program that shortened your undergrad studies by one year.

On November 4th, 2011, Nick and I drove north to Wilkes Barre for a big acceptance meeting with the Dean of the Advanced Dental Program at Wilkes. A tough older woman, she was very impressed with Nick and the meeting went well. I was so proud of him. Nick was in! We said our goodbyes, walked the campus again, then got into the car to began the drive home. Just then, my cell phone rang. It was my security company for the store. ” This is L&R Security calling…password please? What? I gave her the password…”You have a holdup alarm indicated. The police have been notified and are enroute to the location”. I tried calling the store. No answer. I called again. No answer. This was bad. Real bad. I called again and Nadine, my manager, finally picked up the phone. I could not understand her. She was hysterical. “We were robbed!”. I was 3 hours away. I would make it there in less than two. This was not good.

Next Up: The Robbery

The fall of 2010 would be a busy time. The store was busy as usual getting ready for the holiday, Nick was preparing for college visits and was participating in several school plays where he was in the orchestra playing his Alto Saxophone. I must say that he was pretty good! Joey was fitting in great with the older 16AA hockey players and finally enjoying himself playing the game he loved. The new private school was different to say the least. The Academy of the New Church in Bryn Athyn, PA, was an entire private educational system that was a self contained ecosystem and covered Grade school through four year College. The Community and school were centered around the writings and rants of the son of the medieval head of the Lutheran church in Sweden. Emmanuel Swedenborgen’s twenty written volumes of his personal discussions with Jesus Christ…ok…we’re the gospel and centerpiece of their religion. Joe was one of 24 freshman boys in the high school. Specifically recruited to play hockey, the school was also well known for its Nationally ranked Basketball program. Joe was a top player for their hockey program. The school had its own ice arena that was semi covered and outdoors. It got mighty cold in the winter there. The hockey season didn’t get rolling until the beginning of November since the weather needed to be cold enough to help freeze the ice in the rink. Since there were so few students in the school everyone needed to play multiple sports. I picked Joe up after school everyday after athletics and tutoring on my way home from work. One day he advised me that he was now the Quaterback of the JV football team. Wow! What a surprise that was! He was an excellent athlete. Now I got to go watch him play football too. I loved it. Luckily, it didn’t interfere with hockey so he was going seven days a week full blast. School, football, hockey. In addition, all JV players had to play Varsity football too since they were needed as backups in case of emergency or it was a blowout game. He got to get into a Varsity game against Lower Moreland, a hockey player, who never played organized football, playing Varsity QB as a freshman. Never imagined I would see that. Either did he. Pretty funny, but he did ok.

The hockey season started for ANC and all was going great there too. Joe was third in scoring as a freshman and lighting it up every game. The IHL was a league made up of Private High schools in the tricounty area and the competition was not bad. He was loving the athletics and they him but all was not well. Joe has always had some learning issues and with some subjects he had a tough time. His concentration skills were a challenge and over Christmas break we had to meet with the school Principal about grades. Joe would need to see a student tutor to help him get through a few classes, which he agreed to. When the new semester started, after the New year, he met after school with his assigned tutor and began trying to better his grades. We were seeing some improvement but the Principal wasn’t happy. He called another meeting to discuss Joe’s progress. He also felt that Joe should have an assessment for ADHD and counseling with a professional to talk about his performance in the classroom. This would be on their behalf. We agreed to move forward.

Appointments were arranged to have Joe go through a series of cognitive and behavioral tests over a short period of time to assess his situation. Additionally, we began meeting with a sports psychologist who spoke with Joe about his goals and expectations for the future. The sessions were both interesting and productive. Lori and I met with the testing team and the doctor to confirm the diagnosis that Joe definitely had ADHD. This would explain a lot and help us move forward with a plan to help him succeed. This was not an extreme condition but one that would need to be controlled with behavioral exercises and potentially some medication. Meanwhile, the Principal felt that Joe should take a break from the hockey team for a bit until his grades improved. This did not go over well. Joe had specifically agreed to attend ANC to play hockey. He had left his schoolmates in Central Bucks for this purpose only. After the Principal told Joe this, Joe decided that he would immediately walk home, only about twelve miles away. My friend John Charaszyn called me to let me know that he picked up Joe on York Road about eight miles from school. Ok then. The next morning we went back to ANC and had meetings with the Athletic Director, Basketball coach, Hockey Coach and Principal. Since Joe was an “outsider” to the Swedenborgen community, no mercy, the Principal refused to give in. Either did Joe. Joe was having an issue with many of the religious leanings that were interjected into the science courses, history courses and even math courses that were in his curriculum. He had no clue as to why subjects they learned would even have religious answers to questions in them. This apparently was a problem with many recruited students. As parents we also had to take classes to understand and be oriented with their religion before Joe could attend. It was indeed a unique situation. One that Joe would not give in to and would leave ANC for the CB public school system mid year. He began to thrive again in his classes at Tamanend Middle School and began to work with the ADHD issue at hand. Another new beginning.

I was feeling great about my new-found health situation. The blip that was my discontinuing my medication last year had but a minor impact on my well being. For the last eight months my blood counts have been great with no signs of Leukemia. Ten years now on Gleevec and besides the minor side effects, I feel well. I felt that a ten year old car should and would be a very nice gift to myself for this ten year milestone. When I pulled into the driveway with my new blue 2000 Chevrolet Corvette, Lor just shook her head. What could she say? It was sweet. I also narrowed my Florida search down to a beautiful golf community on the West Coast near the Gulf of Mexico. Tara Golf and Country Club in Bradenton FL. That would be my next project. Blue Corvette, Blue Water….I deserved it. Things were looking up.

Next up: Two Juniors and a Really Bad Call

This was a tough spring. Things for Joe were not going well with the Little Flyer Organization. Although he did fine with the older team this season he had wanted to go back to his age group. Still, there were a handful of parents who really had it out for him. Their prima donna brats were so high strung and wired by the constant bashing that they got from their insane fathers and mothers about their play left them like ticking time bombs. Dont get me wrong, there were a lot of great kids and parents on these teams. The handful of crazies could ruin the good vibes in an instant if something was possibly interfering with their kids path to the NHL. He wasn’t the only player to feel the wrath. Joey had a carefree, joking demeanor, always trying his best and could chirp with the best of them. He mainly saved it for intimidating the other team but some of these high strung, stressed out, teammates couldn’t handle any of it… if Joe decided to kid with them or they with him. So be it. We decided to have him try out for a different club in New Jersey. The tryouts went well. Joe was polite, followed the directions of the coach and kicked ass on the ice. By far the most talented Defenseman on the ice. After the week, the coach posted the players names on the bulletin board while the kids got undressed in the locker room. I went out to the car prior and watched as the coach exited out the side door. About 15 minutes later, Joe came out carrying his bag with this sullen and shocked look on his face. His name was not on the list. He slammed his bag into the trunk while other parents walked by telling us that they were in disbelief that Joe hadn’t made the team. Without saying a word, he climbed in the passenger seat and stared forward in silence. I could see and feel the hurt consuming him inside. The frustration was overwhelming him as he threw the door open to the car and he marched into the arena. I knew that the coach had left quickly before the players would look at his post. What a coward. After realizing the coach had left, Joe left my phone number at the front desk and told the receptionist that he deserved an explanation. Joe rode home in complete silence. The pain was oozing out of him. He knew that he was the best out there. This had nothing to do with hockey. It crushed me too seeing him wronged like this. His maturity amazed me.

A few days later the coach felt the need to call me and explain the situation. He was getting a lot of questions about Joe’s departure, from teamates and parents. He told me that the season before he had so many problems with bad actors on his team. Two players that horribly attacked another player in the locker room after practice. These were 13 year old boys. This among other nasty incidents committed by other players throughout the season. These players were released but made their way on to other AAA teams. “Why Joe”, I asked? “Well, I got a couple phone calls from some parents from his former team saying that Joe could be a handful, an issue.” I asked him if he ever displayed any derogatory actions ever during this time with you and any other times he was in your presence? “No”, he said. “But after last season I don’t want to take any chances”. So these prima donna ahole parents took it upon themselves to go out of their way to blackball a 13 year old kid? I hoped that they were proud of it. I felt bad for their kids. Stressed out “superstars” who never really got to enjoy the game. It was pathetic. It was sad.

So the next email I got from this coach was to make sure Joe was at the All Star festival tryouts the next weekend because he was sure that he would make the team. He put in a good word for him. Are you kidding? I showed the email to Joe and for the first time in his life he declined the challenge. He was broken. I emailed this guy back, such a renowned coach, and basically told him to screw off. How dare he come back a week later with this shit. Joe already had other offers within the week.

The Old York Road Raiders were a AA hockey club in Montgomery County that played out of an ancient arena, old time hockey and a friend of mine offered Joe to come out and see if he liked the team. Now, Joe was 13 years old and the team was all 16 years old players… 16AA in the DelVal hockey league. They were some big boys but Joe’s talent was right there or above the level. Size was an issue but he was a tough kid, and really quick. This turned out to be a good fit and he was really enjoying himself as his skills were welcomed by the team and they very much enjoyed his chirping skills. I got to help coach too. It was going to go well.

About a week in, during practice, I received a cell phone call from…. Guess who? The Jersey coach. He had a change of mind, or conscience, or came to his senses and wanted to know if Joe would like to come back to the team. I gave the phone to Joe and almost peed myself as he politely told the coach ” Absolutely not!”. “Thanks, but no thanks”. I was so proud of him.

While this drama was playing out, I was told that I would be playing chauffeur to Nick’s seven upcoming proms. I had to buy the tux, it was cheaper. He had one Holy Ghost Prep prom and six sister school proms coming soon. Very eventful. A handsome, well loved, polite young man. I was very proud of the young men that I was raising. As 2010 was moving on, my two guys were settling in with their lives, Joe bobbing and weaving through some big big boys, scoring goals and causing mayhem. And Nick excelling in his Junior year and preparing for his college plans to come. Me, just another year of daily chemo meds, another season of cheer and playing Santa Claus. Lor, doing her library thing and watching her guys grow. Things were working out well. Joe was also recruited to play hockey at a private boarding style school, The Academy of the New Church this year. The fall of 2010 would be a great adventure as well as the new year 2011…Exciting stuff….

So anyway, we were playing at the Grundy arena one Sunday morning against the Grundy Senators. There was a woman in the stands that was emulating some of the past parents bad behavior that we had unfortunately become accustomed to and was relentlessly berating her own team and ours. By the third period it was really out of control. Constantly screaming at the top of her lungs, from obscenities to insults to you name it…it was very Ugly. There was a face off near our bench where this nut was sitting behind at the top seating row. Before the face off, Joe skated up to the center, his friend Jamie Crane, and they spoke for a second. When the referee dropped the puck, Jamie drew it back to Joe. Joe spun around and sent the puck whizzing over our heads, past the bench, and within inches of the crazy, screaming woman’s head. She immediately sat down and shut up. The referee then escorted Joe off of the ice for the remainder of the game to a standing ovation from the entire crowd. An ovation of appreciation as the woman stormed out of the arena. I wasn’t upset. I knew that he wouldn’t hit her, he knew it to. He was too skilled. The referee actually thanked Joe for shutting her up but had to penalize him. She was a bully. Joe always fought against the bullies. He fought for the underdogs, for the picked on kids. On the ice and off. He stood up to the crazies and wired wannabe superstars and never backed down. If that’s what the “issues” were Mr. Coach, I’ll take him on my team any day…. Any Day.

Next Up: ANC, ADHD and Tara

A few more months had passed since I began taking Gleevec again after the abysmal failure of our cold Turkey abrupt ending of the no drug experiment. After three months my blood was back to normal and within six months my DNA came back in line with the reversion to a B Positive blood marker. As long as I retain a sustained full remission on Gleevec, I remain a clone of my brother.

But what happens next? There are many CML patients that are denied a pure and sustainable remission from the get go. The drug only breaks the surface of the disease in some instances and does not give the full 5 log remission that is known as a complete metabolic remission or considered curative. Patients in this position have alternatives at this point in 2010. If Gleevec is not working for a patient suffering from Cml, there are new drugs that have been created, 2nd generation TKI’s by Novartis that are more potent than Gleevec. Drugs like Tasigna/Nilotanib…Dasatanib…Bosutinib…Ponatinib. Four more powerful TKI drugs that can put your Leukemia in arrest. The only problem is that as you move up the TKI ladder, the side effects become harsher and more dangerous in some instances. A trade off of either doing nothing and dying of Leukemia, or moving on to the harder drugs and possibly passing from the harsh side effects they create.

Nilotanib was created to overcome intolerance to Gleevec and is 20 to 30 times more potent. You can’t eat any food 2 hours before you take your pills and then need to wait an additional hour afterwards to eat again. Going against these guidelines could cause instant death through prolonged QT, a heart attack of sorts.This type of side effect would scare anybody. Dasatanib is even more potent, 325 times more potent than Gleevec. Used only as a last resort for very specific mutations this drug can also do great damage to your heart.

A very good friend of mine, Mark Oswalt lost his dad to cancer a few years ago around the same time his mom was diagnosed with CML. The timing was awful as was the diagnosis. Mrs. Oswalt was a trooper and followed the treatment protocols as per her doctor’s orders and trudged along with the usual Gleevec side effects while gobbling down 800 mg a day of the little brown pills. Her side effects were tough but the alternative was worse. Over time her PCR testing continued to show improvement, but never that 5 log reduction in her pcr markers. This was not good. The drug was too weak to control her Leukemia. Her doctors moved her up to the next level drug Tasigna when it was approved and this 2nd generation miracle drug quickly and efficiently put Mrs O into a lasting remission. So far so good! No Bone Marrow Transplant, no Interferon, no long term hospital stays. That’s the way to do it.

My current situation leaves me again cruising along on 400 mg of Gleevec a day and full 5 log PCR, complete remission. Dr. Dave wants me to maintain an every three month blood draw so we are sure to stay on the same path of remission. Sounds good to me.

On the home front…Nick got his drivers license and a great Black Toyota Rav 4, driving himself to the Prep for school and his first job working as a dish washer at Wally Mitchell’s restaurant in Surf City, NJ. Joey was growing at a frenetic rate and moved hockey clubs to higher age levels and away from more drama. He was also courted and accepted a spot at the somewhat interesting and prestigious high school The Academy of the New Church to play hockey there. A prep school based on an interesting religious take on a breakaway Lutheran Swedish Church Leader. Ok then. It would indeed be interesting. My time has been spent looking for a vacation home in Florida and the spot is narrowing down to the mid West coast. We shall see.

Next Up: New Schools, New Teams, New Adventures

Hi All… going to take a break writing until after the New year. Crazy busy at the store and getting worn out…10 days to go! See you soon! Happy Holidays to you all! Jeff

So here we were. After ten years of daily dosing on 400 mg of Gleevec, I would be walking away on a wing and a prayer. I was not the first. Of that, I made sure. I may have been a Guinea Pig when my life was on the line back in 2000 but not now, no way. The first patients that had enrolled in Dr. Drukers experiment to forego Gleevec after at least five years in molecular remission, had started about a year ago. The results were varied. Many patients remained in full remission for a sustained period of six months plus. Others had lost their remission in as little as two months, the average loss being five. Now it was my turn. Bye,bye brown pill. I won’t miss your side effects. Not one bit. But, I thank you for your remarkable service.

It was March of 2010. I went downtown to see Dr. Dave and do the bloodwork necessary to begin the study. I got great news when he told me that monthly Bone Marrow Aspirations would not be necessary like we thought that they would be. Hallelujah! The test of time every month though would be a negative PCR test. Since my current bloodwork was 100 percent negative, we assumed that today’s would remain so. In one week, after the results come back, I will begin the process and stop the drug. Anxious? You bet!

I got the call from Dr. Dave and it was all systems go! All Stop! “Put the Chemo pills away and live your best life bud”. Here we go. It was weird. I was on such a schedule for ten years. Every night, without fail, well mostly every night, I made sure I took my meds. In the frig, chilling, waiting for me to grab the bottle and dispense the life saving formula. As time moved on, I would get used to not reaching for that bottle. You know what else I got used to? No side effects. No more swelling of my eyelids or water retention. No more bowel discomfort issues. No more dragging fatigue and tough mornings. Life was really getting better. Ten years of daily Chemotherapy meds can be a real drag. The cost of staying alive. I didnt mind. Take the pills, live another day. Done deal for me. But this was freedom. Could I actually go on like this forever? Cured of CML by virtue of such a long remission on Gleevec? We shall see.

End of month one. Blood results…negative. Sweet! Let’s keep it up! End of month two. Blood results…negative. Sweet! C’mon Blood! End of month three. Blood results…negative. Sweet! Feeling Great! End of month four. Blood results…negative. Sweet! Cruising Now! End of month five. Blood results…positive. Boom!!

“I’m so sorry to tell you this Jeff”, said Dr. Dave. ” Your PCR results came back and the results were positive and trending up quickly”. This was bad news. Like a relapse all over again. So, Bone Marrow Transplant, didn’t work. DLI infusions, didn’t work. Interferon treatment, didn’t work. Gleevec worked, but a lot of CML patients removed from Gleevec therapy were experiencing a Leukemia free life. Not me. The relapse would entail a quick Bone Marrow Aspiration to rule out any sign of accelerated disease or Blast Crisis and the immediate return to my 400 mg daily Gleevec routine. Immediate return. I will see you tonight my little friend. 10 pm. Back to the grind. Back to the fatigue and baggy eyes. I got a call from Dr. Druker too that week. He appreciated my participation in his trial and felt badly that it didn’t work out. The good news was that most trial participants that relapsed became PCR negative again within a few months after resuming their therapy. So did I. After three months of blood testing, my PCR negativity resumed and luckily there was no issue of advanced disease. Back to zero. Back to normal. Well…as normal as you can be after fourteen years of this shit. C’est La Vie.

Next up: The Next Generation

As we sailed in to 2010 getting used to our new neighborhood and surroundings, things were getting interesting. Joe was finishing up another season with the PLFlyers and it went pretty well. Jimmy Watson was able to move Joe onto a new level and a new perspective. We would move on to a different path. Nick was cruising around with his drivers permit and getting ready to fly. Business was kind of boring actually while sales were few but buying scrap held center stage. It was business either way and earnings were steady. I was actually beginning a search online for the area that I thought would be the best for a future retirement/ investment property to buy within the year. It was a Zillow quest, hovering over neighborhoods on Google Earth and trying to nail down the perfect spot in Florida. East or West coast? The best view. On a golf course, With a pond view, near the beaches, quiet development, perfect location. No problem…would take me at least a year. I felt good though. The bills were getting paid, my staff were happy, we weren’t killing ourselves and my health was great. Hallelujah!

“You’ve got Mail”… was the response by my computer when I turned it on. My AOL was jumping. Like 50 emails waiting to sift through. One by one, I scanned down the list and there it was. The header was short but hit me like a ton of bricks. Dr. Druker/Jeff Keenan /CML Request. I took a few seconds to open it but I can’t lie, I was pretty anxious to find out what the esteemed creator of Gleevec and lifesaver of so many wanted with me. The email began with the usual pleasantries, ” Dear Jeff, hope you are well”. ” It has been 10 years since you started taking Gleevec with minimal issues. We know about your gastric issues and your fatigue, etc. Your PCR results are right on course and blood work almost perfect although your Hemoglobin remains low. Besides all of these findings my outcome was moving on positively and hopefully towards a curable situation once and for all”.The email continued….

“The Portland Oregon Center for Health Sciences and treatment of Cancer” is embarking on a study on Leukemia and the after effects of longterm Gleevec usage. The study would follow long time gleevec molecularly negative survivors who had been PCR negative for at least 5 years. Those patients who were selected would be able to stop taking their medication for as long as forever if weekly blood testing would prove that a lasting remission proved to be Leukemia free! Wouldn’t that be amazing! It was our choice to opt in or out as the patient eligible for the study. I jumped right in!

Blood testing would be done weekly as well as a bone marrow aspiration every month for six months. Our beginning marker was full 5 log remission. No sign of the protein that causes CML. Cold Turkey. No more Gleevec for at least 6 months. Dr. Druker encouraged me to speak with Dr. Dave and discuss the plusses and minuses of the study. The caveat was that any upward change towards positivity in the Leukemia markers, I would immediately be put back on Gleevec. Immediately!

OK DR. DRUKER WHEN DO WE START! Dr. Dave was all in, as well as my family. If I could become independent of this Chemo drug forever it would be amazing! We would begin the study in April and every week thereafter, a trip to Dr. Dave’s office for bloodwork for at least six months. Well, here goes nothing! Bye, bye, Brown Pill. I won’t miss you, but I could have never lived without you.

Next Up: Five Months…