I went to a new patient orientation with my parents and got to learn more about the proton center and meet some patients. I really like the community this place creates. They call you family there and they mean it. I will be meeting with the media person from the hospital this week to learn how to be a patient advocate for proton therapy. There is a huge gap in education on the importance of this kind of treatment which is why no insurance companies will pay for it and few radiologists even know of it or think to suggest it. Had it not been for my cousin Mandy and the team at MGH I would have never known the importance of radiation therapy and fighting to receive this kind of treatment. I hope to be able to share information on it with my doctors back at Evanston Hospital and more locations in the Chicagoland area.
Other than the medical stuff I am trying to have some fun. My weekdays are quite lazy, full of resting and snoozing, walks with the pup, and finding little projects to do to pass time. Usually I rally for one day of fun on the weekend. I have been lucky enough to see my Nela quite often who is always guaranteed to make me laugh and have a good time. I got to see Sam and Peter and Ryan with one of my favorite bands on Friday and had a birthday dinner for Christina the night before.
It is quite an interesting time in my life. I'm trying to find relief now while remembering every moment of this for others. These tough times fuel my need to help others in similar situations when I am finally healthy enough to.