Thursday, January 28, 2016

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!

Thursday, January 21, 2016

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.

Sunday, January 3, 2016

Last Chance

What if today was your last chance? That's the question I ruminated over on the 31st, as I ran a last minute, last chance, half marathon with my buddy Jules. I hadn't trained, but you guys know me - I'm always up for a challenge, and I'm not great at longterm planning. Jules had come up with an idea, a dare if you will, to run a half marathon every month for 2016. But of course, 12 half marathons in 12 months wasn't enough, we had to do a pre-half marathon, a literal last minute half marathon on the final day of 2015.

My longest run in the past year has been around 3 miles. A half marathon is 13.1 miles. A gross difference.

With my track record of race mishaps, this one was no exception. In fact, if I made New Year resolutions, it would be to pay closer attention at races. So, of course Jules and I needed to use the bathroom before we took off for the race, so as others were stretching, jogging in place, and getting ready for the start, we trailed the end of the bathroom line. As the line was halfway through, the race started. By the time we made it out of the stalls, everyone had taken off. So when we started running, we didn't know which direction to head. My instincts in these races are solid 100% off, knowing that, you can guess that we ran in exactly the opposite direction of the path. By the time we figured out where to go and redirected, we were 15-20 minutes late from the starting gun.

It was 21 degrees, and icy in Bellingham, and I hadn't been running outside at all, but the second my legs started moving, I was bouncing and excited. There's this thrilling feeling I get when I run, especially when I'm in a competition. And what I learned is that the best place to start a race is from behind because you never get passed.

While I ran for that 2.5 hours (or 2.3 if you deduct our bathroom and detour incident) I had plenty of time to look out at the beauty that is the PNW. I also had plenty of time to think about my life, my health, my love for Dan, my love for my family, and friends, and the gratitude I have to be here on Earth, spending time learning, and laughing, and exploring. I know that sounds cheesy, I mean it IS cheesy, but it's also truth. Reflection is a powerful, helpful guide that reminds me of all the interesting things I've been able to accomplish, the trials I've gone through, and how fortunate I am to be in the state that I am in now. Sometimes I forget how healthy I am because I get scared by the ins and outs of treatments, of the routine MRIs - the reality of the state that I live in. I'm always trying to be present, but in each moment I feel the weight of a lead shoe waiting to drop. I know it can change in an instant, and that there is a big old blob in my brain that doctors expect will kill me.

As I ran, I kept thinking about what if this was my last day on Earth, what if this was the last time I could run, what if this was the last year of my life, what if this was the last time [fill in the blank]. Would I do anything different? Just the title of the race "Last Chance", was tantalizingly provoking. The combination of endorphins and the tease of theory, of philosophy, of desire, and potential loss, washed over me in a deep cleansing.

Since the 31st I have been crippled with soreness, with pain, but it feels glorious to be alive and although I will most certainly be training for the next 12 half marathons of 2016, I will ride that pain to every finish line in honor of my brain tumor comrades who will never have the luxury.

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