Truthfully, I’d been feeling very good overall. Clinically, I’m great. Feeling stronger both physically and mentally. When we walked into our two month checkin on 11/13 with Dr. Neil, our oncologist,  everyone in the room was completely blindsided. There were zero signs. I was feeling great and we walked in feeling confident and BOOM! The floor completely dropped out from under us. We had worked so hard for so long. We followed every direction to the letter. I had even managed to successfully ween myself off the steroid, Dexamethasone, after nearly three whole YEARS. Anyone under that has ever had to be on that drug for an extended amount of time will understand what an accomplishment that is in itself! I was getting out more, running small errands with Stacy, I was able to close down parties like I used to. We took in a Twins game for our anniversary. I celebrated a Gameshow birthday with loved ones. We attended a Halloween party and got dressed up in costumes for the first time in years! We started to hope. Dream. To start to plan to purchase our first house. What my first show could be on stage, despite my mobility issues. It was a big old shit-sandwich and there was nothing we could do but open wide and swallow every bit. “That’s what she said.” It sucks. But it is what it is. Also “What she said.” Jinx. You owe me a Vitamin Water ;)

So where does that leave us? New and active cells. Yes. Cells. As in plural. Besides the original spot near my brain stem & thalamus, a new spot pushing against my cerebellum was also discovered. The good news is we caught this as quickly as possible and my amazing care team is already formulated a treatment plan. I’m actually getting ready to head to my second of thirteen planned radiation sessions that will conclude Thursday, December 21st, so I’ll be done my treatments before Christmas! Good thing, I started Christmas shopping in October and finished this week ;) I’ll be able to be home resting and recovering under the warm glow of our Christmas tree with Stacy & Mystique. After the new year, we’ll meet again with our care team to check on how things are looking and possibly prescribe a medication that targets my specific mutation. All of that might have sounded a bit overwhelming and even a bit scary. Trust me, it is. But I’m not going anywhere anytime soon. This is a small bump in our road. It sucks hard. Also “That’s what she said.”

When I recently shared this news with a dear friend, she asked me simply, “How can I best support you and Stacy?” I nearly broke down sobbing on the spot. She didn’t ask, “What do you need?” Which puts that ownership on us to come up with something on the spot and we never know what we “need,” until we actually need it. But most the time, we’re just “out of of spoons” and taking everything thrown at us one day at a time. 

I’m off to treatment. However if you have any any desire to help support us through this difficult time, reach out. Donations to our Venmo accounts are always appreciated, but what really helps is knowing we’re not alone. Call us, better yet, schedule a visit. Make time to come share a hug, share a meal, watch a movie, maybe go see a show/movie, play a game, come rub my head for good luck (I HAVE HAIR 😱 for a limited time). Please keep us in your thoughts, keep sending healing vibes, prayers, and all other forms of positive energy. 

All will be well and don’t you forget, my best and our best is yet to come 😉 Love to you and your families ❤️ And I hope this finds you all healthy and happy!

“Support.” And that’s what she said ☺️ (Thanks, Punk.)