It has been a while since I last posted on my blog. At the beginning of the fall I started experimenting with Instagram to show my day to day life of living with brain cancer. You can follow my profile and check it out HERE. Also, this fall semester I have been balancing the fatigue …
I’m sick of being sick. I’m sick of laying on the couch. I’m sick of having to cancel plans I made months, weeks, or days in advance from grabbing a cup of coffee to going on spring break vacation. I’m sick of feeling good for a day or two, thinking I’m on the mend, only to realize I was being tricked. I’m sick of my doctors and I knowing what my symptoms are, but not knowing why. I’m sick of not knowing when I’ll feel better for a sustained amount of time.
September 25th, 11am: I sat in my doctor's office at UCSF waiting for the results of my MRI. I've been in this same office numerous times with a picture of mountains hanging on its sterile white walls. Even as a medical student, I wonder why we design doctors' offices this way. If you're going to make it all white, keep it all white without putting up a picture of a place patients would rather be. Otherwise, and preferably, make the room more warm, welcoming...human.
Warning: This post is long! This is not the usual post where I dive into the emotional aspects of my experience. Rather, this is a pretty cut and dry description of my three weeks of meetings and calls to develop a treatment plan. During my 2014 recurrence, I wrote a similar (...yet less detailed) post about treatment decisions. I received a lot of messages from patients and family members of patients who found that post helpful. This is for that audience. My hope is that this very detailed explanation of my treatment meetings may shed some light on how much information is involved in informing a treatment plan. While I share a lot of detail, I want to note that this is my experience. Every individual's situation and decisions will be unique to them.