Month: November 2022

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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