A much needed break in treatments

 Things have gotten very busy around here! So much has happened in a short amount of time and I’m so very grateful for all of it! 

The best part is that I abruptly got to stop chemo! I was in complete shock. Immediately I called my mom “WOOOOO” ing over and over again. I was so happy but thought “is this good news?” It seemed so unreal. I couldn’t imagine not doing chemo at this point. 

I tried to wait to unquarantine but I couldn’t do it. Within days I was pushing myself to the physical breaking point. I shouldn’t have because it now feels like my entire body is put together wrong but mentally it was worth every single second! 

Also, my amazing friends started a benefit for me! This just made my heart soar! I am so beyond grateful for them for doing something so selfless. What started as something so small has now turned into something much bigger and I have to admit that I’ve happy cried multiple times during the planning of this. They keep trying to keep me from helping but I just can’t sit idly by and watch them do all the work. I never knew how much went into a benefit but holy moly my friends deserve some awards! 

I remember as a kid when I’d see a benefit for someone I’d think l, “wow, that person is so loved” and now that person is me and it has really shown me how loved I am. They didn’t have to do any of this… they didn’t have to put themselves out there or spend their time away from their families/lives to help me but they are. I really hope they know just how much it means to me and my family. The burden they are relieving is astronomical. Instead of having to take out a loan or go into debt to make this trip to LA work, we may have enough to cover the costs or at the very least, cover most of it. Maybe, just maybe, Derek can come with me for a bit! 

Today I had my radiation simulation with my new Dr. She met with me before doing the simulation and expressed her deep concerns for the surgery with Dr. Tseng. She said they don’t do surgery unless they KNOW they can get the proper margins and hopes that radiation will do its job. I told her no matter which route I choose, I take a major risk.

 The difference from my viewpoint is that with Dr. Tseng, I keep my leg/pelvis longer. Tseng’s approach looks at the long run with more fight now. Whereas Mayos approach looks at the success now, and a great loss in the future. 

Mayos approach of high dose radiation now will stun the tumor but only for so long. A tumor my size cannot be “killed” so what happens when it wakes up again? Chemo, radiation, repeat? Until I say no more, take half my body instead. Tseng’s approach at least gives me a quality of life for longer. Plus all the research says, get it out of your body. 

After I was done speaking with Amed about this a nurse came and took me towards the prep area. I had already had my port accessed earlier for a blood draw so I got gowned up and they flushed my port before bringing me into the CT room. I laid on the table and the radiation techs lined up lasers that shown down from the ceiling across my belly. They marked my belly and pelvis with a red marker then placed ink on the dots they made. They took a needle and punctured my skin where the ink was to make three small dot tattoos. As of today, I have three new freckle tattoos. Glad I didn’t have to pay for these ones! 

Next, they laid my lower legs and feet on this plastic pouch filled with little styrofoam balls. They sucked the air out and somewhat made a cast of the position of my legs and feet. They keep this cast so for each radiation it gets my body into roughly the same position each time. 

I did my CT scan. The contrast is always fun and makes you feel like you peed your pants. This time it also made my tongue hot? Yeah, I thought it was weird, too. 

I was very lucky today as I finished up my CT scan the nurse said there was an opening now for the MRI I was supposed to come back for tomorrow. That meant I didn’t have to lay awake all night with my anxiety skyrocketing over the next 16 hours or so. I immediately thanked God for this small favor. 

I got to the MRI room and the techs put my feet in the cast and lined up the ceiling lasers with my new freckles. The red laser lights formed a large t across my pelvis. This MRI didn’t take nearly as long as my normal ones do so I managed to survive it without my whole body buzzing with anxiety. 

That’s it, the day was done and I got my official schedule for radiation. So for the next five weeks starting from October 19th until November 20th I’ll be doing radiation in Rochester at 10:30 am. 

This is all very surreal and I’m grateful to be moving on to the next steps. Each process brings me one step closer to surgery where I have the CHANCE to be NED. I know it’s a long shot but this way it’s at least a possibility which is such an amazing thing to think about. I can’t even wrap my mind around the idea that maybe just maybe I could be cancer-free for a time. It’s a beautiful thought! 

Hope this finds you all well! If you’re able to come out on October 24th at 2 do the benefit. It’d be great to see you and catch up over a drink!