I’m posting this before I walk out the door to go catch my 6:45AM flight to New York City…

NEW YORK CITY!?

That’s right New York City. I’m sure you are shocked just like the fine actors in the Pace Picante ad I have posted below. Similar to the Pace Picante Sauce, my cancer treatment is being “made” by the fine folks at UNC who know what cancer treatment “should taste like.” Not those fools in New York City!

Let me digress.

We were all thrilled to see 2020 come to an end; it was a crazy year for all of us. Each of us could write a novel on how it has changed our lives permanently. We all had our battles this past year; mine just happen to include fighting cancer. I had a little business to take care of right before the end of the year with progression scans the week of Christmas. Who in their right mind schedules cancer progression scans three days before Christmas? Well I guess this guy does since that is all they had available.

The scans were deemed “stable”, however there was concern that some of my lung tumors had a couple millimeters of growth. This didn’t raise any red flags with my oncologists as mm’s of growth could be shadows on the CT scan, or me laying a different way, either way we continued on with chemo for another three cycles.

I made my way back to UNC on 2/1 for the follow-up scans. The results were very similar to those from 12/22: my sinuses were clear of cancer, but my lung tumors showed slow growth and raised concern with the radiologist…and this time with my oncologist. Two scans in a row with some of the lung tumors growing slowly; for example a tumor that was 1.5cm is now 1.7cm. Nothing major, but a sign that something is not working anymore. More than likely, that something is my chemo cocktail.

One of many things I love about my oncologist is we take a methodical, scientific, team approach to treating my cancer. He lays out the options, tells me what is best based on the science of medicine, then we go through a process of elimination of what has the best chance to work and what has the best chance to let me keep living the life I want to live. The conversation on 2/1 was neither the easiest, nor the shortest, but end result we both agreed upon has me traveling to New York City today.

I have a very rare form of cancer where the disease is formed when two specific genes bind together with a special protein the body produces…that is the most simplified way to describe it. There is a doctor at Memorial Sloan Kettering in NYC, who is my oncologist’s former mentor, running a clinical trial on a drug that is designed to keep the protein from binding the genes, thus killing the cancer. So instead of poisoning my body with a different chemo cocktail, or trying a less proven option, the team decision we made was for me to enter the trial at MSK.

The good news is the drug is pill based. I should only be spending a couple days a month in New York; fly up, do my tests, see my new doctor, get a bottle of my meds, come home and spend time with my family living the best life. The goal is to regain control of the disease in my lungs and get more shrinkage. It is a clinical trial; so there must be the understanding it may not work. But there have been previous trials with this type of drug that have had some success. We will remain optimistic we can find that success as well.

Due to covid protocols Ann is not allowed to come to MSK with me, so she will be staying home with the boys while I make my journey. Please know that while I will physically be traveling alone, I know that all of you will be with me in my heart. All of you have been an amazing source of motivation the past year. You are the lightning that sparks my thunder; please don’t stop inspiring me now.

Now is not the time to cower or be overcome with sympathy. We are all sorry that this terrible disease has invaded me, and all of the other cancer warriors out there in the world. Today gives us an opportunity to show the world we are stronger than the disease and the emotions it forces us to feel. If you own a “Fight for Ben” shirt put it on with pride. If you have some “Fight for Ben” stickers find an awesome place to stick one today. If you feel like yelling and screaming and telling cancer to fuck off, please by all means do it; because I do it daily. Be strong and be powerful in your movements today. I will feel the lightning you create, and clap back with loud thunder all of the way from NYC as I push into the unknown on this next phase of my journey. And remember it is not a journey I am taking alone; you are all along for the ride.

I have known from the beginning that we were going to “run out of the picante” on occasion (See what I did there? A metaphor for a treatment not working anymore); it’s the nature of the disease I have. But unlike the Pace ad, the picante from New York City is going to be the best option we have moving forward. So grab a chip, and take a big scoop of this thick and chunky salsa NYC is going to be serving up and hope it hits all the right cancer spots.

Feel today’s thunder. Let it move you. Let it guide you. And don’t ever give up.

Much love to you all.

Ben