Clear MRIs

good news my MRIs are looking clear a doctor just came and told me the spine MRI looks clear (they worried about new cancer growth there possibly causing my new lower back pain.)I am now just waiting on the review of my second brain MRI with contrast dye -But so far all the residents / doctors are now saying it looks like inflammation from radiation and not new cancer so that’s really good news. They are also recommending me for inpatient Shirley Ryan again for intense physical therapy so I can gain strength hopefully as quickly as I lost it. that transfer could be happening pretty soon today or tomorrow(waiting on insurance) if they have a bed available there at SR. i’m looking forward to putting in the work to get strong again so I can be independent having to rely on people to go to the bathroom on my

own (needing help to get on and off the toilet is about the worst thing ever. ) That’s my main goal is to get strong enough to use my walker again and stand up and sit down. I find gratitude in the small things lately I’m grateful for all the other things I can do. many people in my condition w GBM or with similar brain issues or injuries have lost their memory their executive functioning skills their speech… I feel lucky I’m just dealing with physical leg issues and I have my full mental capacity intact if it’s just me having to gain strength again physically I can do that.

Of course I’ve been kind of still working this whole time overseeing what’s happening at the West town Chamber of Commerce. I have a wonderful staff and team there and I just have full faith and trust in them (but of course I am a control freak in some ways so I am always checking in and even though it says I’m not checking my emails I am. By the timeI finished with this next round of physical therapy hopefully my treatment plan is going to change to they’re saying instead of any radiation or chemotherapy pills I’m gonna do a new infusion therapy which is less harsh than chemotherapy and won’t cause hair loss and nausea and all that. I’m not excited about going in and getting infusions but I am excited for a less harsh treatment. It seems like the radiation and chemotherapy made everything worse I know it is killing the cancer cells left there but… I don’t think I would do radiation again.

I do have a rather intense new art project in the works - I actually got started on it at homeover holidays- I am making an art installation out of my radiation mask it’s a really creepy looking plastic mesh thing that they snap you into the machine so your head doesn’t move so it looks just like your profile and it’s like a cream colored hard plastic mesh I’m gluing all kinds of weird shit to it (I got multiple weird items from the hospital stay last time plastic needle covers and weird Q-tips and bed pans and multiple objects I have incorporated into a crown for the radiation mask along with fake flowers and vintage Mardi Gras beads( I guess you have to see it to understand and turning it into an art piece with sound Incorporated I drilled a hole into the box and add a Bluetooth speaker and I have been making recordings of hospital noises the noises of the MRI are crazy intense the noises of the radiation machine all the beeping in the hospital that just drives you crazy The ringtones of the nurses phones honestly I have PTSD from all the crazy noises from the hospital every time I come back here I dread the beeping - my noise canceling headphones have been a lifesaver. But these recordings are going to be incorporated into the art piece and it’s gonna be a very Frida Khalo inspired creepy cool thing. My dear friend Kirsten my partner at idao Gallery who passed away from the same exact type of brain cancer 12 years basically from the date of my surgery in August 2021she was a sound installation artist / sound installation major at the Art Institute and so I wanted to incorporate sound in her honor to the piece.

I also set up an easel and paint and a mini art studio at home and I’m looking forward to getting strong enough to go home and getting back to my painting. I’m finishing a dog portrait for someone and doing a self portrait also inspired by Frida Khalo and basically trying to express my rage and anger through art.

(Once again sorry voice recognition errors but I wanna try to blog more…