Friday, July 31, 2015

'No matter how you slice it, the results felt disappointing'

The last post was done quickly and somewhat efficiently to get the news of the scans out before you all headed home for the weekend. I left out a lot of details and some things that took some time to digest and process. Here are more thoughts from the weekend, starting before the scans:

'No matter how you slice it, the results felt disappointing'

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The last post was done quickly and somewhat efficiently to get the news of the scans out before you all headed home for the weekend – I know have a more captive audience when I can steal 10 minutes of your employer’s time than when competing against family time.  I left out a lot of details and some things that took some time to digest and process; plus I had to figure out a way to tie in the March 1st part no matter what the outcome was. I wasn’t leaving out that slice of perspective.  Below are more thoughts from the weekend, starting before the scans:

After a full afternoon of tests on Thursday, we unwound listening to some island music at a beach bar across from our hotel – they are having a tropical music fest there all weekend.  Josie was in heaven, dragging my dad, Jen or I out to the sand dance floor for nearly every song.  It was a nice “escape” from everything for a few hours; regardless of how Friday turned out, it was fun (sort of) dancing with an almost-three-year-old to Floridian singer/songwriter Sunny Jim White and Jersey boy John Frinzi.  Usually when I see these guys perform it is one big party. While that was true for most of the crowd last night, the Sharpe family got a bunch of nice, low-key moments together – thanks Jim and John.

No matter how you slice it, the results felt disappointing – I’m sure that was evident in the tone of the post, as quite a few people have emailed encouragement.  For one of the few times in the last six months, it got me down.  I was so sure that I was going to ace this and we would see stabilization or tumor shrinkage across the board.  So despite the scans being preliminary, and there being several good signs mixed in there, nothing about Friday felt like a success (except for getting the port out). This weekend was the first time I felt vulnerable.  This weekend was the first time doubt entered my mind and stayed longer than I would let it.

Quite a few people have pointed out how the Yervoy has a reputation for having tumors grow in the initial weeks after treatment, and that TIL is a long-lasting treatment that works over an extended period of time.  I am in the process of reading more about this online and seeing how reliable some first and second-hand accounts are.  Hey, Ronan, Juliette, Jim, Jennifer, Nancy, and the rest of the Bristol-Myers Marketing Department, I know you are reading this – feel free to email me something a little more substantial and I will update everyone with a better scientific interpretation of what it means.

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I still did the Parrothead shows, and enjoyed the time with my family listening to the musicians, but there was something decidedly off-kilter about the entire experience.  The whole family froze at Bright House Networks Field watching the Phillies on Sunday, even with Josie’s spirited “Lessss Go Fiiwwies.” It was still damn the torpedoes, full speed ahead – the weekend was going to be about fun family time, even if this wasn’t the celebration of good news we all thought it would be. 

Jen and I reflected on the entire weekend Sunday night– previously after hearing difficult outlooks, we were (almost) immediately able to process, deal with, and as I have described it, compartmentalize the “bad news.” It made having a fun-filled family weekend challenging, but finishing up this post, I realized that we functioned fairly normally the entire time.  I can feel the optimism returning.  

Vince Lombardi once said, “The quality of a person’s life is in direct proportion to their commitment to excellence, regardless of their chosen field of endeavor.”  In my case, the commitment is to beating cancer and paving the way for others who face or will face similar roads.  Sometimes, keeping our quality of life on track helps remind and refresh that commitment to excel.  Even if singing and dancing and cheering the Phightins wasn’t what we felt like doing at different points during the weekend, I am very glad we pushed to do most of the things we planned.  The commitment to overcome the odds has been renewed.  The bad news has been put on the shelf.  The fight continues.

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About this blog
T.J. Sharpe is sharing his fight against Stage 4 Melanoma. A South Jersey native and Bishop Eustace graduate, he currently lives in Fort Lauderdale, FL with his wife Jennifer and children Josie and Tommy. He was Patient #1 in a clinical trial at Moffitt Cancer Center in Tampa as the first person worldwide to use this sequence of treatments to fight melanoma, and is currently in a second clinical trial at Holy Cross Hospital in Fort Lauderdale receiving Merck’s anti-PD-1 drug Lambrolizumab

The Patient #1 blog will update the progress of T.J.'s fight against cancer, and also touch on many cancer-related topics.

Follow T.J. on Twitter and Facebook. Reach T.J. at Patient1@tjsharpe.com.

T.J. Sharpe
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