My 26 Year CML Leukemia Adventure

There was so much going on right now. Joey had finished his season in Sweden and come home for only one week then was off to play in the Federal Hockey League in Mentor, Ohio for the Mentor Icebreakers. Unfortunately, he broke his pinky finger in half on the tip during his second game and only lasted a few more weeks while he tried to play with a custom splint after they operated on it. Didn’t go so well. He came home in the end of March. And Nick, he was coming home from Los Angeles because he just couldn’t resist the Philly Real Estate market and wanted to make his mark. It would be great that for once the two of them would be home at the same time. Better yet, I could talk to them about my situation. It was about time. For a whole year, I kept them sheltered from the storm that was brewing inside of me. The last time that I went through my devastating relapse they were little boys. They had no idea of what was going on or the gravity of the situation. They were young men now.

I arrived at U of P hospital for my visit with Dr. Luger and after the usual thirty plus minute wait, was escorted into the lab to draw my blood. This visit was at the end of my third month taking the new drug Tasigna. Dr. Luger had lowered the maximum dosage by 200 mg to attempt to curtail the constant itching and burning that consumed me on a daily basis. She called it a “Quality of life” adjustment. Since the drug had made my white cell count decrease slowly, she felt that a lower dosage would help decrease the side effects. My appointment today would tell me if Tasigna was still doing its job…with less rash and discomfort. The fatigue was still a killer but nevertheless a necessary evil. Dr Luger met me with her usual grin, smirk and greeting. Followed by the barrage of questions to assess my current state of mind and body. In real time, she would watch the lab results come up on her computer screen. As we spoke, her eyes would glance at the screen while she refreshed her browser, patiently waiting for the next set of data and the direction we would head. Bingo!

Her smile said it all. A miraculous reduction in my counts! As Dr. Luger turned the computer screen towards me to see for myself, she started rattling off her assessment of what it all meant and the possibility of lowering the dosage even more in a few months. Now, this wasn’t a “You’re cured now” moment. It was a “Keep the Faith” moment. The astonishing results were something to behold though. I would return in a month to hopefully see an even greater response to this second miracle drug. My conversation with Nick and Joe would be much more uplifting and positive now. With excellent CBC results and a trend towards remission, I would still have to wait more time for the new PCR to return and solidify the assessment. Ok boys, welcome home, it’s time to talk.

Next Up: Bye Bye Country Club Drive

I was winding down from the last few hectic months. The great trip to Sweden, the busy holiday season and my first trip to the University of Pennsylvania Abramson Cancer Center. Since my Leukemia situation wasn’t resolving itself through the increased dosage of Gleevec, Dr. Luger decided to start me on the next level drug….Tasigna. As I mentioned before in a previous blog, Tasigna is thirty five times more potent than its predecessor Gleevec. I began taking a very heavy dose, 800 mg, since the acceleration of my PCR was not to the doctors liking. It hit me like a ton of bricks. The first week on Tasigna knocked me out! This was one heavy dose and like Gleevec, getting used to the new treatment would be challenging. The worst part of the drug would kick in soon, disabling me with a horrible case of hives. My whole body was completely covered in a red, scaly, itchy, burning rash. It was unbearable.

Of course, this upcoming week was Valentines Day. The store always experiences a nice uptick in business for the holiday of romance and love. In past years, the end of January would be the start of shopping for most men who hadn’t picked up something for Christmas or were newly in love or wanted to do a Valentines engagement. Times have changed. Now, Valentines Day business was just usually the last few days before the 14th. Replaced by a flowers and dinner and maybe some candy kind of vibe, most young men do not splurge on the Diamond hearts and Heart jewelry like they used to. Don’t get me wrong, unlike Christmas, it’s just not like it used to be. This season, I didn’t care. I was in lifesaving mode again and this stuff was killing me.

The hives continued to irritate me twenty-four seven. Dr. Luger recommended that I take oatmeal baths and use anti itch type lotions until my next appointment coming up the next week. These antidotes really didn’t help as the rash was everywhere on my body. When I finally arrived at U of P, Dr. Luger was astounded by my dilemma and apologized for not realizing the extent of my hives. They were bad. She immediately started me on large doses of Steroids to try to resolve the issue. Meanwhile, my blood counts were actually moving in a positive direction. My WBC count had dropped slightly and hopefully, within the week we would have a positive reduction in my PCR. I would return in another month to repeat these studies and keep in touch to see how the steroids were working on my rash. As far as the debilitating fatigue and other issues, well there was no relief in sight until the Leukemia numbers came down to a point where Dr. Luger felt comfortable enough to lower my dosage. Fingers crossed, I would not be the second and now only patient in the world to succumb to this rare and unusual mutation. Now come on lovebirds, buy some Diamond Hearts!

Next Up: Astonishing Results

I could never sleep on a plane. Like I’m flying this big behemoth by myself across the ocean. The flight from Stockholm to JFK was probably the longest of my life and it sure felt like it. Plenty of time to contemplate the situation that I was in again. It’s not like the return of my CML has left my mind for more than maybe a couple of minutes while I’m busy with other matters, it’s front and center the majority of my time. Keeping the bad news between Lori and I was also a great chore. The questions always coming at us from our parents and family. Just relentless. I’ve got to put on that happy face and march on towards the upcoming showdown in January at U of P. Cancer Center. My big meeting with the powers that be in the blood cancer center would be interesting. My new Oncologist, Dr. Selina Luger, was already working on the new plan of action to fight my relapse and aversion to Gleevec. Being the only patient/human in the world with this deadly mutation is making me a long term volunteer to test the effectiveness of whatever new drug the team deems to be the best fit for a cure.

My Norwegian Airways flight touched down around midnight on the JFK tarmac Saturday evening to a very black sky and a chilly November night. Lor was waiting for me and we headed to the Bronx to stay the night. The next day, after sleeping a little, Lor and I would head south to get to our home sweet home and some good food! I took Sunday off to get back on my time, USA time, and get some well deserved rest. I needed to get back to reality! The holidays were here and I needed to get my team up to par and ready to rumble. I was expecting a good season. Hoping for it too. I had been taking 600 mg of Gleevec at this point and Dr Luger was planning on moving that up to 800 mg sooner than later. We stretched into December and attacked the holiday season with a huge army of new and old salespeople. Again, I ran the floor of four to five employees like an NFL quarterback. Like clockwork, the girls kicked it in and performed spectacularly as the cash register dinged and the shoppers moved like a ballet through the store. Thanks for another great holiday season.

We knew that Joe was flying in for Christmas but we didn’t know that it would be for good. He got back to the US from Sweden on the 23rd of December harboring some bad news. He was stopped in Brussels- Belgium on his connector flight and flagged for over staying his work visa. He could not return to Europe for six months! All of his personal belongings were in Tibro. His computer, hockey equipment, clothes etc. We tried everything to reinstate him. No luck. He would enjoy a quick respite with the family and sign immediately with the Mentor Icebreakers in the Federal Hockey League. The FHL was a Northern, East coast and Southern states pro hockey league. He had Charles, his Swedish teammate, FedEx his equipment and some other things from Tibro. Joe would report in three days to Mentor Ohio. Much closer than Sweden! I was reporting too… front and center to the Hospital of the University of Pennsylvania. Dr. Luger was awaiting my arrival. The Phlebotomist too. A ton of vials lined the case holding the upright rubber topped vessels. I think Ms. Dracula filled about nine test tubes as the lightheaded feeling kicked in. I was escorted with Lor, to a small exam room where Dr Luger would deliver her assessment, her opinion, and her treatment. I was her new Leukemia test dummy.

Knock, Knock….the door opened and the very beautiful, intimidating and intelligent Dr. Luger entered the room. She stared at me for a few minutes. Lining me up per say, scaring me a little bit. She noted that the excessive blood draw was in case of an emergency where I could possibly be in need of a quick bone marrow transplant. That would suck. We don’t want that. My results returned quickly showing an upward trend in my white cell count. Not the answer that we wanted. Their answer would be Tasigna. The next level of treatment for me to try to get free and clear from this bastard CML. I would begin taking 800 mg starting immediately and call the nurse moderator with any issues. Crossing fingers…here we go again.

NEXT UP: Hives and more Hives

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I got to sleep-in the next morning. As uncomfortable as my room was, this would be my home base for the next three days. I told Joe that I would meet him at the arena and not to worry about coming to get me before his morning skate. This was a big mistake. I Googled the arena location and it seemed to be walkable. Even so, I tried to arrange a cab or attempt to take a bus. Good luck. I began my trek and attempted to follow the directions on my phone. Oh my God! I was so out of shape! This place was far! I pushed on taking breaks wherever I could find a place to sit. When it seemed like I was going to collapse…there it was. Such a beautiful sight! I made it! Across the hockey world, wherever a team calls home, no matter the size, the nickname for every arena is the “Barn”. “The Wells Fargo Center”… the Philadelphia Flyers “Barn”. The Tibro hockey club had a great Barn. The giant European style ice surface was covered by a huge arched wooden roof. The seating was wooden and the aura of a past era. Many Swedish Professional Hockey clubs were very storied and had been fielding teams for years. In Sweden, like Canada, hockey was life.

I reached the front entrance to the Tibro Community Arena and to my dismay, the doors were locked. Like, I’m ready to collapse! Literally! I walked around to the rear of the building where I assumed that the players entered and again found a locked door. I knocked a few times and finally a team representative opened the door. I was in. The team was on the ice and after I identified myself, was welcomed to watch the session and got a grand tour of the facility. I enjoyed this moment so much. Tears came to my eyes as I sat there and realized that I was watching my son playing for a Professional Ice Hockey team in addition to harboring a secret that I couldn’t reveal to him. That I really had no idea where I was headed with my new dilemma and that I was just so proud of him. So proud of both of my boys. The pace of the practice was fast and furious. These guys could fly. The passes were crisp and the pucks flying at high speed towards the net. It was fun to watch. Afterwards, I got to meet the coaches and hang out with the team in the locker room as they wound down, showered and finished their day. It was hysterical. So many different nationalities and languages. Swedes, Canadians, Joey, Latvian, Russian and Finnish teamates. A typical locker room vibe. I was so happy for him.

Joe’s roommate was a Swedish goalie named Charles. A typical Swede, blond hair and blue eyed, he spent three years playing D3 College Hockey in Massachusetts and was trying to make a career back home. Charles had an old Mercedes SUV with a million miles on it but it rode great and I wasn’t walking anymore! We stopped at a gas station where I filled up the tank and then a small market to buy some groceries for the boys. Little did I know that I would be cooking pasta with meat sauce for Charles, Joey and about three other teammates. It was a great time. I found out that these guys are very competitive off the ice too. XBOX was our entertainment for the evening. Afterwards, the boys dropped me off at my hotel and promised to pick me up the next morning. One more day until I would watch my buddy play his first game. Wednesday morning came quick and the guys were beeping for me outside. We stopped at a Bodega style market for some quick breakfast and back to the arena we went. The preparations for Thursday night again were high speed and packed with adrenaline. After their loss on Sunday, the team was pumped to face off against a long time rival in front of a packed arena. This night was a going out to dinner night. It would be early, of course, but Joe, Charles and I would sit down to a nice meal and talk about both of them starting in their first Pro game. Sure, they were nervous, who wouldn’t be? And very excited.

Back in my room, I knew that I wasn’t going to get much sleep. I was so excited for Joe… and quite honestly for me too. Ever since I tied his laces for him and put him on the ice when he was three years old, I dreamed of this night. That was twenty years ago. I was in a bad cancer place then too. This was my life. I wouldn’t trade it for anything though. But now, my guys would understand the gravity of my situation if I broke this news to them. I wouldn’t put them in that position until I knew more. A lot more. Time to get to sleep though, my next two days were going to be a killer. In the morning, I was able to arrange a cab to get to tonight’s game. I didn’t want to bother Joey, game day prep was sacred and mental. I got to explore the town of Tibro today. It took me about twenty minutes. I stopped in an old school hardware store. Some things had layers of dust on them so thick that you couldn’t see what was in the box. Another store had cell phone supplies and did cell phone repairs. The owner , a Libyan immigrant, told me of the many immigrants that were placed in Tibro and other towns in the area. Mostly Muslim, the women all wore Hijabs and rode bicycles everywhere. He told me of relatives in the US and how he longed to join them. I ate lunch in a small pizzeria that was advertising itself as a “Taste of Italy”. It was awful… Lol.

The cab that I arranged was quite old with a Somalian driver. Luckily, he knew the route and I made it to the arena in good time. Ticket in hand, I entered through the main gate and found my seat. The game was fabulous. I couldn’t understand the game announcer, of course, but it didn’t matter. Joe played great! Tibro IHC had their first win and I enjoyed eating the biggest, longest, hot dog that I had ever seen. Delicious! And I cried. I was a bit overwhelmed when Joe jumped over the boards for his first shift. From that point on, I coached his every play… In my head, but nevertheless, it was in my blood. I couldn’t help myself. The atmosphere, the music and the fans in the arena were electric. I couldn’t believe that I had to leave in the morning. After the game, just Joe and I went out to dinner. I basked in his glory and his excitement. Charles lent us the Mercedes and after a great night, we went back to my room and watched some Swedish TV. Tomorrow morning I would be back on the bus to Skovde, transferring to a train, and making my way to Stockholm for the long plane ride home. The fifteen hour trip would be exhausting. Since the bus stop to Skovde was right near my hotel and the departure very early, I said my goodbyes to Joe that evening. It was so hard to let him go as I hugged him before he left. I knew that he appreciated me being there. I wouldn’t see him again until the holidays. Good luck # 26. Love you.

Next Up: January’s Coming

I was excited to be leaving Gothenburg on Monday morning to go see the town where Joey was living…Tibro. Tibro was apparently a small enclave in the south central part of Sweden that would be about a two and a half to three hour trip by train and bus. I was fortunate to have an English speaking hotel manager who not only called a cab for me but was a huge Philadelphia Flyers fan! We talked hockey for about twenty minutes until the taxi arrived. He was so happy to meet a real Philadelphian and thanked me for staying at his hotel for the few days that I spent in Gothenburg. Now, off to the train station and make my way to see Joe. The station in Gothenburg reminded me of a toy train setup that my Dad would put up at Christmas time when we were kids. A whole bunch of trains lined up facing the station, like fifteen across. Some were commuter style trains and others more like the one that I rode in in from Stockholm. I had planned my route the night before and needed to purchase a ticket to Skovde where I would then get on a bus for the ride into Tibro. One problem. When I approached the ticket booth and asked to purchase a one way ticket to Skovde, the teller looked at me like I don’t know what. I said, ” I need a ticket to SkOvdee”. Again, he looked at me crooked and said…. in Swedish… who knows what he said. Lol. He was kind enough to find me an English speaking rep who kindly corrected me in my pronunciation. I was going to ” Hoovduh” What? “HOOOVEDUH”. OK then, how much?? Just get me there, eh. It was actually pretty funny. I grabbed some snacks for the ride, it was a commuter style train, and I found my seat. Only a two hour ride this time.

The ride to Skovde was pretty uneventful. It was snowing and a much slower pace with many stops along the way. The scenery was typical, lots of trees, lakes, red barns, small towns and lots of graffiti. What a shame. Everywhere that I’ve traveled in Europe, graffiti was prevalent and excessive. I don’t get it. Anyway, without a beautiful blond traveling companion to pass my time, I just kind of closed my eyes, off and on, to rest up for the next leg of my trip. There was very limited cell service on the trains when traveling across the rural areas of the trip. The train finally pulled into the station in Skovde and after a little bit of luck, I purchased my bus ticket and found my way to the terminal and another mass array of large vehicles lined up in rows. I was almost there. This ride was different though. It would be forty five minutes of bus stop to bus stop….like a ride on Septa through Philly. The little boroughs were very rural and the stops not far apart. There were lots of students coming on and off and we passed a very modern, somewhat large town before we reached the final destination. I almost got off at the wrong stop several times. They were marked with Skovde but the stops were just small street drop offs before the final terminal. It really wasn’t a terminal…lol. It was a jughandle where the busses just dropped off and picked up people heading back to Skovde. The drivers made the round trip like four times a day. But here I was. I made it to Tibro. I was literally dropped off in the center of town. We’re talking like one central square bordered by four small streets and a few more around that! Talk about a small town! I walked to the hotel and found the front door locked. Nobody home. I needed to call a phone number to alert the manager who made her way to the “lobby” to let me in and show me my room. The hotel was only ten rooms and eight were occupied by full time residents. Mostly transplants from Africa, like many residents of Tibro. The town was integrated by the Swedish government with migrants from Africa and Syria. I found out that this was a huge problem in Sweden that backfired on the powers that be in the past few years. The open border policy caused a huge riff in the politics of the country and changed the course of elections to bring back a big conservative movement rejecting the current immigration policies and working to expel the immigrants back to their prospective countries. Crime was out of control as well as the cost to support the influx. Tibro was a prime example, I observed.

I found a small supermarket to buy some snacks for the hotel room, so expensive! I also went into a bank to exchange some American dollars for Swedish cash. Apparently not. Swedish banks don’t have cash. Or tellers. You took a number and then were called to a desk manned by a bank associate. All transactions were handled on cards. Unfortunately, I had no bankcard that would work so I would have to use my credit card for the rest of my trip. My Kronas were gone already. Prices here were crazy high!

Back in my room, worst one yet, I got in touch with Joe and let him know that I made it to Tibro. Another eventful day. We would meet tomorrow at the arena.

Next up: Opening Night

I had made my way to the hotel in Gothenburg via another cab and finally got a driver who spoke a little bit of English. He enlightened me to some local eateries that I might like before reaching our destination. Entering my room, I thought that the last place that I stayed at was small! A virtual kids shoebox, this room had barely a window or view and a bathroom that you could hardly turn around in. I ventured outside to forage for food, following the directions of my cabbie, and to my delight, found a Thai restaurant in walking distance that had a delicious menu. I just made it there before they were about to close and I left with a nice takeout order to satisfy my need for edible food. Swedish TV is a real treat. There are some English speaking stations that play reruns of 1990’s era sitcoms, but mostly it was slim pickings. What really got me though was the fact that the commercial breaks were literally 10 minutes long…or more! Every commercial was about some type of lottery or online gambling site. The Swedes are huge gambling addicts! No wonder! Every morning I would go into a small local grocery store to grab an orange juice and a bagel and there would be huge lines of people waiting to buy lottery tickets or pick numbers. It was crazy!

Laying in my tiny cot, bed, whatever it was, watching endless gambling commercials, I texted Joey to wish him well for his first game of the season. The game that I would surprise him at the next day. I had it all planned. Inconspicuously, I would watch the game in the arena and afterwards. I would make my way to where the players exited to their dressing rooms and yell “Hey 26, nice game!” How special would that be? His text response went like this…” The Canadian player and I will not be suiting up for the opener. Our IIHF transfers won’t be complete until Tuesday. We can play in our home opener on Thursday.” “U’m what?” I thought. You’ve got to be kidding me! I traversed an entire ocean, to another continent, then across the whole country to watch him play in his first Professional Ice Hockey game… and he’s not playing! Is there a plan B? What now?

The game was scheduled for 4 pm. Since Joe wouldn’t be playing, I figured that I would get to the arena just around the time the game was starting so that I wouldn’t run into him. I walked around the town a little bit and after grabbing lunch from a little pizzeria I came across, I hailed a cab to make my way to the arena. It was an electric atmosphere. The team that Tibro was facing wore Detroit Red Wings style uniforms and looked quite impressive. Some big boys out there. European hockey was played on a huge rink, much larger than the typical North American ice surface. Joe would need to make a big adjustment in his game. That was for sure. I bought my ticket and scanned the sections for Joe. There he was. Sitting with the Tibro management and some other players, they were watching from the second level just above the main concourse. I waited patiently for the first period to end and after the horn sounded, walked past where he was sitting like he wasn’t even there. All of a sudden, I heard this scream as I passed… “That’s my freaking Dad!” He ran down the steps giving me a big hug and blurted out, ” What are you doing here?!” I said,”Have I ever missed an opening game bud?”

We watched the rest of the game together, an opening loss, but a great game. Afterwards, he boarded the team bus to return to Tibro and I attempted to call a cab at 9 pm at night in Gothenburg. Good freaking luck. The cab companies didn’t speak English! After a frustrating half an hour, I was able to find someone who understood my dilemma and finally got me on my way. The next morning, I would be traveling another three plus hours to Tibro, Sweden. Luckily, my departing flight out of Stockholm was on Friday. I would get to watch my boy play his first Pro game. I just have to get there first!

Next Up: Pronouncing “Skovde”

It was the culmination of a career over eighteen years. As I was settling into the realization that my Leukemia was giving me another go around, Joe had signed his first Professional Hockey contract. He would be traveling across the pond to play for the Tibro IHC in Tibro Sweden! A dream come true for him, it was an opportunity to be paid to play the sport he loved. We were so proud of him. Since he hadn’t celebrated his September 21st birthday at home in years, we arranged a nice party at our home to send him off. That was at the end of August. According to Joe, Sweden was a big change of pace from the US and Canada. Quaint, quiet and old European, Sweden is essentially a small country where the teams in their various Professional leagues are situated and directly associated with their towns. Game days were a big deal to the townsfolk and the teams a source of great pride. The arenas are alive with the loud cheers and chants of the fans all game long. Travel to the home arenas of rival teams usually meant a Coach bus ride of anywhere from one hour to four hours. Not bad compared to the exhausting trips of up to twelve hours in the US and Canada. Even though a contract was signed, as usual, you had to pass muster at the initial main camp and survive to make the initial twenty man roster. We got the call a week before his opening game that he made the top squad and he was good to go. Every hockey parent, Pro or Amateur, knows the agony of waiting for the final cuts at the end of tryouts. Joe had been on both ends of those outcomes. It’s not easy.

In all of the years that Joe has played hockey, Lori and I had rarely missed an opening game. Wherever he was playing, we made the trek to watch and cheer him on in his new endeavor. Chicago, Boston, Ottowa, Toronto, etc…. we were there. Now, with the return of my cancer, there was no way that I was going to miss his first game as a Professional Hockey player. No way! Lori was not going to be able to make the trip because of work, but I arranged a last minute flight to Stockholm. I booked hotel rooms in Stockholm, Gothenburg, and Tibro. I was on my way! I packed only exactly what I needed and what would fit in my backpack, got some Swedish currency from AAA and took off from JFK Airport on a Thursday evening before his first game that Sunday in Gothenburg.

I had never been to Sweden. A foreign country, different language of course and I needed to navigate myself across the entire landscape. No problem…right? First off, I had no clue that Stockholm was so far from the airport. A hundred US dollar cab ride of about an hour. I found out that I got ripped off. Next, the hotel was nice, but very old, and the rooms… Ikea small. Like a cot and a table. The food was awful and the people were nice but quite to the point. Not much conversation going on with people that they didn’t know, even if they spoke English. I did observe a group of twenty something couples come into the Pub where I was attempting to have dinner. The young men greeted each other at the bar with jubilant hugs and kisses while the women adjourned quietly to their own table. Very interesting. Anyway, I made my way to my cubby hole to plan my next day. In the morning, I would take another cab ride to the Stockholm train station where I would make my way to Gothenburg. Only a four and a half hour ride across the country. I needed to get some sleep. It was a six hour time difference and I was pretty beat.

Sweden in October reminded me of Pennsylvania, brisk and cloudy. But the weather was about to change quickly. Snow was in the forecast for this last week of the month and my travels would be cold and wet. I made it to the train station and secured my ticket. “Pretty expensive”, I thought. I had to wait about ninety minutes to depart but the train station was quite comfortable and it had a Burger King! Heaven!! I was able to do some people watching too. Little did I know, the Swedish population was very diverse. It reminded me of Toronto. A lot of Indian, Pakistani, African and Middle Eastern people at the station. The local population was also not as beautiful as you would imagine. Lol. Those strikingly beautiful blondes were hard to find. My Burger King hamburgers tasted so good! A little bit of Americana really helped my belly! I diligently watched the departures board as the time for me to get out to the platform was approaching. This was a huge place. It would be easy to get confused and become disoriented looking for the correct platform, train, etc. There were people moving everywhere. I made it outside to the cold and cloudy exterior of the station. The snow was definitely on its way as was the multitude of trains rushing in and out. This was crazy! I took a deep breath and tried not to get too anxious. Here it comes! Train number 1121, car number 4, seat number 102. I’m on my way. Boarding the train felt like boarding an airplane. Gate number, flight number, seat number. Same deal.

Seat number 102 was not a window seat and that sucked. Two seats per side of each aisle, like a plane, the four and a half hour ride would have been nicer being able to enjoy the scenery from that vantage point. The horn for final boarding sounded while the seat next to me remained empty. Lucky me! I would move over as soon as we started moving. In that instance, I felt a shower of water rain over me from behind. I turned back to see a young beautiful blond Swedish girl shaking her wet long blond hair. The reason for my unscheduled second shower of the day. She said something in Swedish to me and pointed to my coveted window seat. No way, I thought. I got up and let her sit in her seat and as she continued to speak, I just said…”American”. She laughed and in perfect English she said, “Oh, no problem, I’m sorry I got you all wet!”. As the train started to pull away from the station, our conversation began. At twenty two years old, an instant ambassador for her country, her personality was as sweet and beautiful as she was. We talked about Joey and his journey that landed him in Sweden. Nick and his accomplishments. Lori, how we met and our life in the states. Her family, friends and life in Sweden. Her name was Madeline. She was on her way to Gothenburg to meet friends. I mentioned that almost every barn in Sweden, and I saw hundreds on our trip, were red. She laughed and said that she had a family vacation home in the country, with a red barn. We passed multitudes of lakes along the way. Sweden was such a beautiful country. “I wish that I had more time for sightseeing”, I told her, but as usual, I would be only traversing the arenas to watch Joe. We exchanged views of photos of everything from jewelry to horses, homes to loved ones and great pics of the tall mast cruise ship that she worked on. Four hours flew by. As we approached the station in Gothenburg, I invited her to the arena on Sunday to meet Joe and enjoy the game. We exchanged Instagram contacts and after departing the train car, I thanked her for her company and conversation. The snow was coming down now and as she walked away, Madeline turned back around and waved goodbye with a big warm Swedish smile. It was such a pleasure to meet her. I had my first Swedish friend. Now, to hail a cab and get out of the snow to my hotel room. It was another long day. Tomorrow was the season opener! Btw…Joey had no idea that I was coming to Sweden! Surprise!!

Next Up: That’s My Freaking Dad!

My somewhat urgent email to Dr. Druker was inevitably intercepted by a member of his staff when it arrived at the Portland University Health and Sciences Center. Their response was cordial, to the point and somewhat ambiguous. If and when Dr.Druker was available to review my case, I would be alerted to be ready for a call. That call was key to understanding the intricacies of why and how, my Gleevec stopped working on me after so long. Things were good. Business was good. Nick was flourishing in Cali, and Joe up in Canada again. Lori was teaching away in the North Penn School Library system and continuing her reign as the District Library Chair.

About a week after I had submitted my Hail Mary letter to Dr. Druker, the phone rang with the glorious sound of “Mr. Keenan, are you available to speak to the doctor?” He’ll yes!! …”Please hold”. As I composed myself, readying every question, comment or analysis that I would confront him with, I felt my life slipping into that void of despair. Please have an answer for me Doc and make it good. “Hi Jeff, how the hell are you?” “Well Dr. Druker, here is my situation.” Hopefully he had received and reviewed my email and would deliver an easy logical answer to my problem. His analysis and take of my issue was that invariably, Gleevec had found a way to circumvent the path to Cml remission and basically become useless in the fight against my Leukemia. The question was why? Our next move was for Dr. Druker to send a special blood harvesting kit that would allow a tremendous amount of blood to be drawn and sent priority status from Philly to Portland to analyze the CBC and PCR parameters in the PHSCenter. The labs there were the tops in the country. He would figure it out.

As the specimens were drawn and packed for their cross country FedEx jaunt to the West Coast, I signed my boys initials on the box for luck… Couldn’t hurt. Now we wait again. About two weeks according to the Hanahmen staff. No big deal. “Yeah right”. Words of encouragement from Lor softened the blow and keeping busy at the store kept my spirits up. Still, no one knew of the predicament. It was still too early to scare the family. Things were finally looking up for everyone. About two weeks in, I got an email from the Druker asking if I would be available to talk the next day. It was Saturday. I said “Sure…what time”. He said that he would call around 3pm, 12 pm his time. I will await your call sir. Thank you. So that email was basically an offer to stay up all night to think about your life, your family, mortality and life beyond the unknown if that exists. Without hard proof, the scientist in me remained skeptical yet full of unbridled hope and passion for my truths to be dashed by that well known or vaulted version of bliss on the other side….Heaven.

So, I was watching the Philadelphia Eagles play the New York Giants in a usual tit for tat battle of the pigskin on an uneventful Sunday afternoon. It was a nice day and the Eagles were actually winning when the phone rang. Right on the money. 3 pm.Here we go. Was I nervous? Are you right now? The question all Oncologists ask when they are about to crush your world is always the same. It doesn’t matter who the doctor is. “Hi Jeff, what are you doing?”. What am I doing? I’m waiting to get my heart ripped out! Or, as I actually answered, “I’m watching football”.”Thanks for the call Doc”. Let’s get down to our Sunday call. Usually not too promising since the call can’t wait until Monday. Spit it out. “Ok, you are a bit of a conundrum. An anomaly of sorts. Our lab was able to read and detect a rogue chromosome. A chromosome only seen or discoved once before in the history of the Cosmic Cancer Database. In fact, you are the only one in the world who carries this mutation.” “And the other patient?”, I asked. “He passed away in 2010 a few months after the mutation was detected in his DNA.” Less treatment available eight years earlier. I would now revert to test dummy status again. I asked Dr Druker if I had a chance for living and how much longer I might have. ” He said…how many years since your FDA trial started have you stayed alive?” “18 sir”. ” Let’s shoot for 18 more” he said.

Dr.Druker would now have me transferred from the I. Brodsky and Associates group at Hahnemann University Hospital to the Abramson Cancer Center of the Hospital of the University of Pennsylvania. Dr. Selina Luger would be taking over my new protocol along with Dr. Druker. Dr. Luger was a renowned expert on Blood Cancer and quite the looker.. Canadien too. They made a fabulous experienced team of seasoned Hemotologist/Oncologists. It was now October and my first foray into the big city would be the first week of January. I would continue to take the heavy dose of Gleevec through the end of the year and contact any of them if things got any worse. I would become the number one and only in the study of J Keenan vs the BCR-ABL(p210) mutation. This was war. Screw you 210!

Next Up: A Pro, A Backpack and A Blond

So many thoughts overwhelmed me at this time. My mind was running rampant with thoughts of what if and where do I go now? What could possibly be going on with my cancer. Why after 18 years would my drug stop working and my Leukemia return? I was keeping this between Lori and I. Figure out the story here and handle it.

My next appointment with Dr. Mike was this week and just about every free minute I had was spent emotionally and mentally preparing for the next move. I’m sure Dr. Mike had done his due diligence and he would be prepared to deliver the goods. But first, to the Phlebotomist to draw another gallon of blood to redo the CBC and PCR test, hoping for a miracle. Would the extra daily dose of gleevec do the job? We shall see. Waiting in an exam room was usually a relaxing respite for me. Lay back on the exam table, usually get in a twenty minute snooze before somebody showed up. Could be a nurse checking in, a Doc saying Hi, an army of Oncology Residents doing rounds and asking a million questions. This time wasn’t as routine when in the next minute you could be hit in the face with a baseball bat. Rhetorically. Figuratively. The reality of a cancer diagnosis pales to the introduction of relapse number one, then two, then three. The mental toll is exacerbated exponentially as each return of your cancer just hammers you.

Dr. Mike entered the room after about 30 minutes with his usual stoic demeanor. So soft-spoken, he was not very excitable. His delivery was a basically monotone word salad of technical, medically charged explanation of your circumstance and diagnoses. In layman’s terms….you’re screwed. Yes, I was. The increase in my medication from 400 to 600 mg a day had done little to stop the increase in my blood counts. They were still trending higher, but not as quickly as before. Dr. Mike said that we would now go even higher in my daily dosage to 800 mg. At that point life becomes more uncomfortable. From 400 mg to 600 mg, not too bad. From 600 to 800 mg., enter the nasty side effects. Our meeting, adjourned for two weeks, I left the hospital and thought to myself…” I’m going rogue” ! Not one to sit back and wait, I knew that I needed to act. Quickly!

When I arrived home, I immediatly went to my computer and found the email contact for Dr. Brian Druker. Dr. Druker was the main creator of Gleevec and probably the world’s most informative expert on the drug. He would know what to do with my situation and take point on the case. I just needed to email him and await a response. His main practice and research facility was located in Portland, Oregon. Dr. Druker informed me many years prior, that since I had participated in the FDA Gleevec trial in 2000, if at any time I would need consultation or help with my condition that he would just be an email away. This was that time. Email written, conundrum explained, lack of direction and answer reiterated, I would await his response. I was going rogue. Taking the fight to my CML. I couldn’t wait for Dr. Mike to figure it out anymore. Let’s Gooo!

Next Up: Keeping His Promise

So I waited. The average length of time before the results of my PCR blood test were received was about ten days. Always an eternity and a lifetime of contemplation within such a miniscule amount of time when you think about it. Every cancer patient will tell you that waiting on test results, whatever they may be, is agony. I already knew that my white blood cell count was highly elevated. An ominous precursor to a positive outcome to my DNA testing. When my phone rang and I saw that it was Dr Mike’s office, the lump in my throat began to explode. Here we go. As expected, the test was positive. For reasons unknown to my current medical team, my CML had returned. It had been eighteen years since I began taking Gleevec. At approximately nine to ten thousand dollars per month for the prescription, the cost to keep me going and living cancer free so far was around $2,160,000. Imagine that! One drug. Thank goodness for health insurance! Now what? Why the sudden change to my condition? I felt fine. I looked fine. I wasn’t fine. The cancer can escalate very quickly, moving into a phase called a Blast Crisis. A situation that has no return. Dr. Dave had told me nineteen years before that he wasn’t going to let me die. Now he was gone and Dr. Mike had zero answers.

The first course of action was to increase the dosage of Gleevec. Hopefully, that would create a situation where the Leukemia would slow down and perhaps stagnate or actually decrease the white cell count. It would also give Dr. Mike more time to consult with other Oncologists who may have some answers as to why my body would reject the current course of treatment. Most CML patients that rejected or had a poor response to Gleevec usually had that happen within a few months of starting the drug. Not eighteen years later. A conundrum indeed. I would return to his office in three weeks. More bloodwork after increasing my dosage from 400 mg to 600 mg per day, starting immediately.

It was May of 2018. Joe was returning from Canada in a week and Nick working hard in sunny California. My parents were getting ready for another summer with everyone at Long Beach Island. This news would not be welcome by anyone. Too many times, our lives have been turned upside down by the terrible return, again and again, of this crap. It would be our secret. Lori and I would wait until we knew more about the situation before unleashing this beast. For now, I hope that increasing my dosage puts a pause on the white cell count. Fingers crossed!

Next Up: Going Rogue