Cancer Convos: Episode 1 #Scanxiety

In September 2014, I went to my premier First Descents program. The experience changed my life, and I came away from the trip with a renewed sense of worth, of confidence, of understanding for other cancer patients of different diagnoses, and best of all some great friends. When you show up for camp, you have about 15 minutes to come up with a camp nickname. The first girl I met was in the airport. Her blue eyes were piercing, she had such depth without even saying a word. It was in her aura. On the ride to the house, she nicknamed me coconuts. She had already been dubbed Crush from when she started her journey with metastatic triple negative breast cancer. We have been friends ever since, and have toyed with the idea of creating some sort of platform to share our ridiculous thoughts/frustrations/experiences. That brings me to today, the first episode on our YouTube channel, Cancer Convos with Crush & Coconuts. It's a fun thing for us to do together, especially since we live on opposite sides of the country. We hope that over the coming episodes we can lightly touch on some of our stories, and help people navigate their cancers too. Today's episode is about #scanxiety, and the types of scans we love and hate. We touch on the pros and cons of different playlists, and the importance of third party independent scan reading centers.

I hope you guys laugh as much as we did during the filming. I felt a little awkward (Jessica quit fidgeting, and playing with your hair!), but I'll get better with more practice. If you like the video please subscribe, or share it with friends.

Our goal is to empower patients with knowledge. There are all sorts of nuances with cancer, and when we talk, and share our stories, everyone benefits!

A Letter to Joe Biden

I just received an email from a brain tumor caregiver about a post he wrote and it is the most eloquent explanation as to why our clinical trial system is failing us as patients. He precisely explains everything I think, and exactly how I feel. It needs no further introduction.

If you haven't seen Surviving Terminal Cancer the documentary, as he references in the letter, please, please click to see it: WATCH THE DOCUMENTARY HERE. And Logan, you are a rockstar! Thank you!



Patients, people, are dying! Until we find a way (and I'm guilty of not figuring out how of solve this problem) to take control of the system of how we treat brain cancer, we will continue to die at a 99% death rate. I may not be a good organizer, but I am willing to do whatever I can to get the message out. To work for the cause in a meaningful way. There is so much money wasted on things that don't help us right now, in this moment. I'm sick of wasting money on awareness, on talk. We need to push legislation through to give patients the opportunity to try promising drugs and treatments. We are given no hope, because the things that could help us are tied up in bureaucracy and it will take years even decades to have access. And during that process, many treatments get dropped because they won't make enough money - not because they don't have efficacy.

I am sharing this Letter to Joe Biden to help spread the word of Logan Lo, about his courageous wife. I don't know how to do it, but we need to mobilize the brain cancer movement in order to gain traction. The AIDS activism, with ACT UP, effectively stopped the requirement of Phase 3 trials for AIDS cocktails, getting the drugs to patients immediately.

Nothing will change until we take our frustration, our fear, and anger, and start being heard. We need the equivalent of the Day of Desperation.