BCCTWB

Hello, hello, hello!

It’s been too long since one of my well written, enthusiasm driven, novella practice posts have made it online. Summer is nutty for everyone, but I’d argue those of us with kids (even the ones in daycare) struggle a wee bit more.

Since my last post, not too much changed from a social perspective. We went to Rhode Island for Labor Day weekend. As per usual, the girls came up with a few “this is not my normal house routines.” Scarbo figured out how to climb out of her pack n’ play which meant sharing a bed with me. Leila claimed a bedroom for her and Ry to share as soon as we got out the car. You know how it goes!

Those nuances aside, we really did have a great time. Both girls touched the ocean (!!!!), played in the sand for an expanded period of time, and were mostly okay with Ry and I going on a spicy strawberry date at the Matunuk Oyster Bar (the best little joint for food and fun).

Rhode Island fun aside, there was a little tattoo action that I think would blow the mind of a handful of people out there. If you don’t like this, let me know and I can pull the pics aside. Maybe 😏…

ANYWAYS. Once all of the fun stuff was done, we were thrown into the annoying zone that I don’t even think either of us thought was possible. Long story short, this turned on that my cancer had become recurrent.

At this point we weren’t really sure what that meant so we conducted a PET scan to further investigate what had been happening. Per the PET scan, the results confirmed that there was some growth on the disease. Now, I don’t wanna give myself too much credit, but I will say I suspected that something had been going on within my body when we had stopped doing the chemo in June.

I know this is a lot for you to hear based on the difficulty for Ryan and our families to hear is, too. Given that neither of us had ever heard of an angioma, it required some Googles which no one hates more than me. In an effort to make a decision of what we should be doing, we wound up visiting the local hospital groups which included MSK, NYP, Columbia, and Dana Farber. Given the commentary (for basically all groups) on the angioma, we decided to move forward if I with a sort of treatment process that put me in a trial out of Columbia.

Since there was an open start, I started on the trial on September 11th (of course of all dates). To initiate the trial, I spent a number of hours at the hospital being poked, scanned and EKG-d throughout the entire day. It was an annoying process for sure, but it made me feel like I was moving on and doing something to help with this stupid disease.

At a certain point in early October, I noticed that I was starting to feel a little funky. I had some shaky legs, a weird voice, my memory had gone completely out the window and a few other random tidbits disappeared. As the symptoms increased, so did the point at my trial where I would be required to sit in on an MRI to just check anything out as it was. Unfortunately, the scan is where we found that the mass had considered to have grown quite a bit more than expected and it was time to take action and move on to something else.

And that is where we all stand. I’ve already conducted a quick treatment with some steroids and will continue until the doctors tell me to stop. To be honest, I found a positive difference in the way I feel a week into utilizing the drugs so that makes me feel a bit more confident in the teams I’m working with, so there’s that…

ANYWAYS – there he is, my consistent pain in the ass. I’ll obviously continue to keep everyone posted and reduce the language between these posts. You all deserve to know what’s going on and how to carry on helping me with this bullshit.

Choochy and a little blurby, I want to thank you all in advance for whatever help and support you’re able to provide. Me and my family value and appreciate your love more than any of you could possibly realize.

Oh and a big PS: check out this website for the next cool screw brain cancer awareness 5k walk: Brain Cancer Chose The Wrong Bitch. Even though it’s in Hudson Yards my girlfriend spent a lot of time putting this together and I owe her a TON of gratitude as she’s demonstrated her love and support for our family.