Patient & Researcher Blog
Here I aim to capture what I am learning as a newbie researcher from a patient perspective.
Living with a slow growing brain cancer
It is taboo for researchers to talk about their work before it is published.
I think that’s a bummer.
My favorite part about research is learning new things in real time. Here I share my observations as a learner and my n of 1 (personal) findings as a patient.
Note: I started blogging about brain cancer in 2008, at age 29.
I had no background or knowledge about healthcare when I began. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.
There are more than 500 posts here. Use this search to look for something specific. Good luck!
Empowering patients with a common language for palliative care
Giving people language for self-advocacy: While patients shouldn't be overwhelmed with clinical language, helping us understand what things like palliative care are and are not improves our ability to advocate for ourselves.
Students needed: specializing in the field of brain tumors
Long story short, Christi and Super Awesome Nurse are in the middle of getting all the paperwork filed so Christi can study with Super Awesome Nurse and hopefully (fingers crossed) become another super awesome nurse in the field of neuro-oncology.
Surprisingly, no pre-scan jitters this time
Dr. L., asked if I would be OK having one of those super long MRIs... the kind that last for over an hour... Since I am a big fan of scans and medical procedures I said, "Hell yeah!" He already thinks I am crazy. Big long scan. New doctor to scrutinize my medical history. Should be interesting.
Changing careers during brain cancer
The one thing truly holding me back was the cost of health care, and worrying about the 90 days it takes to qualify for the new employer's health plan.
Have you heard of temporal lobe epilepsy and déjà vu?
What creeps me out about the déjà vu is that I have heard it is often an aura for temporal lobe epilepsy. My tumor is in the parietal lobe, but the parietal is right next to the temporal lobe, and if my tumor were to ever spread, it could, theoretically, spread to the temporal lobe.
That feeling when your radiologist and oncologist disagree…
He seemed freaked out. I could tell by the look in his face. He felt compelled to hug me and let me know that "a lot of people are thinking about you, and care about you. Be strong."
My grandfather has a brain tumor too
I am afraid that seeing my grandfather on hospice, with a similar (if not the same) malady will only remind me of my own mortality. I am afraid I will find it too hard to absorb, and I am afraid that will come off as shallow and self-indulgent.