Acronym- alicious (PHL, NYC, PET & HOME)

It's been a long month for me. I'm going to try to recap some major events.

Let's start with my trip to the East Coast. My husband and I arrived in Philadelphia for the Desmoid Tumor Research Foundation annual symposium. While I feel like I knew a lot of the information that was presented, there were some new nuggets presented too. I believe the DTRF posted slides from the conference for those that couldn't attend. I met some people and this year actually talked to other people. That was a big step for me. I'm shy when it comes to my desmoid.

Sunday morning was the 5k. We raised $6500+ for the event. 120% of my goal of $5000!! I feel so blessed to have people who care about me. At the symposium they said in the next 5-10 years, they will have a cure. It would be faster if they had more money for research (which is so frustrating!). The 5k was fantastic! My two aunts, uncle, cousin and her roommate all came out for the event. Here's a picture of me at the finish line!

I totally rocked out in spandex. After Philadelphia, we took the Mega Bus to NYC. Monday was a low-key day of resting and Tuesday we went to see a doctor at Sloan-Kettering. He's on the medical review board for the DTRF. I loved my Sloan-Kettering experience. We came up with a plan for how to attack the issue of the growing and not-growing desmoid.

Fast forward 2 weeks to yesterday. To help decide what is going on in my arm I had a PET scan. Seriously I felt drunk when they gave me the medicine. 20 minutes for the drunk juice to stabilize my "brown fat" then I got an injection of radiation that sat inside me for 40 minutes. The actual PET scan only took about 45 minutes. Then we went upstairs to same-day surgery. Are you tired reading that? I was STARVING. No food or drink all day yesterday.

The doctor doing the surgery came in and talked to me and then took a biopsy of the new growth area. It was "hot" on the PET scan. For all the doctor stuff I read, I have no idea what the PET scan numbers mean. Trust me, I googled it extensively today. They took out 6 samples. Apparently my tumor is so dense they could only get 2 samples per needle and then the needle bent.

I got a chocolate malt (YUMMM!) and came home. I rested, ate and went to bed. This is my arm where the biopsy was taken.

It was much bigger than I was expecting. They told me they had this gun thing, that would punch out 6 samples really quickly. Post-surgery, I found out they made an incision?!?!? to get the gun in. That would have been nice to know beforehand.

So I'm home resting and waiting on results. I felt woozy all day today. I keep spilling things and dropping things. So no work for me today, just lots of sleeping. Tomorrow I go back to work. I'm thinking of posting this picture outside my cube so no one hits my arm in jest. I would punch them in the face.

I'm a little worried but I promised myself this time I would let the Big Guy deal with it. What's in there, is in there. Knowing what's in my arm isn't going to change reality. Let's hope the healing with my arm coincides with the emotional healing that I need.

Oh and a quick HELLO to my desmoid friends that I met in Philadelphia! I had no idea so many people read my blog. Hopefully reading this makes you feel not so alone. Comment below or email me if you want to chat :)