New Year, New Me!
Well, here we are. Today marks 19 months, to the day, of my initial diagnosis. The day my life completely changed.
This all started at the beginning of 2018. I had a small bump on the back of my knee that I thought was "just a cyst". Fast forward multiple scans, biopsies and surgery (enter Dr. Max Vaynrub), I was diagnosed on March 8th with an extremely rare type of sarcoma--a CIC rearranged-DUX4 small round blue cell tumor. A cancer so rare that only 500 known cases are diagnosed worldwide each year. So little is known about it that there is no set treatment protocol, so I was treated as if it was a close "cousin." Even though the tumor had been removed, my cancer was systemic. This means that there could be stray cancer cells dormant in my body, not showing up on PET scans. So it needed to be treated aggressively.
Enter Memorial Sloan Kettering Cancer Center. Enter my oncologist, Dr. Mrinal Gounder. Enter my incredible nurses, Jasmine, Sarah and Tracy. Enter chemotherapy. There is no good way to say it, chemo sucks. But if you gotta do chemo, do it with this team. They are some of the best humans I have met. I spent a total of 10 months receiving chemotherapy. By the numbers, this totaled 14 treatments; 26 days hooked up; 208 hours putting poison in my body. But the way I see it, this was quality time I got to spend with my amazing family and friends who never let me feel alone. I was the one hooked up, but we all went through it. We all made it to the other side.
People tell you chemo is hard. But they don't tell you how difficult it can be after your treatments. The fatigue. The weight gain. The mouth sores. The insomnia at night. The hospital vacations, which totaled 10 days. 10 days away from my family. 10 days away from reailty.
And now, it has been 10 months since my last chemo treatment. I have had 10 months to reflect on this journey. When you finish treatment, everyone celebrates for you. "You're done!" and "It's over!" are commonly said. And yes, the physical portion of it is over. But the process is ongoing. I have been back to MSK for various appointments and scans 15 times in the past 10 months. It isn't over.
And the emotions of dealing with the unkown are very present. The reality is, this could come back. And if it does, the outcome might be very different. But, the biggest lesson I have come to learn is that you cannot control what happens to you, but you can control your attitude toward it. So my choice is to live. To stop and smell the roses. And if this had to happen, it sure as hell better mean something.
So, for the second year, I'm riding in Cycle for Survival to raise money for rare cancer research. 50% of people that have cancer actually have a rare cancer, most of which you have probably heard of. But these cancers are LARGELY underfunded. We can change that. I don't take for granted how lucky I was, and am. I have spoken to loved ones of people who were not as lucky as I am, which is why I have dedicated myself to making sure there are more outcomes like mine.
Our team was able to raise $115,000 last year, which we were able to put toward a researcher looking into my specific type of cancer. THIS WOULD NOT HAVE BEEN POSSIBLE WITHOUT OUR EFFORTS! Let's keep this going and raise even more this year. Please donate. Please join our team and ride with us. We would love to have you. We can do so much more, together.
Sending all of the good vibes and thanks to you.
All is well and all my love,