Lobbying with my emotions: brain tumor advocacy is conjuring up all kinds of dirt
A typical young adult cancer experience So there I was, lobbying members of Congress on the importance of brain tumor research, funding, and parity for oral forms of chemotherapy, when suddenly I got emotional. I didn’t think it would happen to me. The majority of my cancer experience has been tear-free like a Johnson &...
Brain tumor advocacy in full swing: it’s time to educate Congress
Apologies: This was typed on my iPad and I didn’t have time to do much editing. I’m in Washington DC today to do something pretty amazing. I’m working with the National Brain Tumor Society to lobby Congress for two things: Lobby our elected leaders to focus on brain tumor research Ask for “chemo parity”...
MRI one-year post Temodar chemotherapy
It has been one year since I was on Temodar chemotherapy and the results are in. [drumroll] My brain tumor is stable. See for yourself… The scan on the left is my brain today, and the scan on the right is my brain one year ago after completing 24-months of Temodar. Since I am psychic,...
Surprisingly, no pre-scan jitters this time
My next MRI is sneaking up on me… I am having an intense work-up on Tuesday (April 17). I will be seeing the *new* neuro-oncologist here in Sacramento for the second time… and this is the first time with an accompanying MRI. I was seeing the neuro-oncology team in south San Francisco since 2008, but...
Brain surgery: the inside story (pun slightly intended)
I volunteer as a “Mentor Angel” with a group called Imerman Angels. This organization carefully matches and individually pairs people touched by cancer (a cancer fighter, survivor or caregiver) with someone who has fought and survived the same type of cancer (a Mentor Angel). I’ve been volunteering with Imerman Angels for nearly six months, and before...
Creating a positive cancer environment: Stupid Cancer rocks the house
Stupid Cancer hosts weekend summit for the young adult cancer movement At the OMG Summit for Young Adults in Las Vegas last weekend I made tons of new friends, learned about crazy disparities in the health care industry, and cried my share of tears. The weekend was so awesome, I almost felt bad for my...
The young adult cancer movement is going to Vegas
Whatever happens in Vegas… will be shared with all of you on this blog I’m going to Las Vegas next weekend. Whenever I tell people that they respond with something like, “Oooooooh, Vegas. Wow, that’s going to be nice. What shows are you going to see? Where are you staying?” Then I explain that I...
Screw “watch and wait”… keep fighting
What to do while you’re waiting for your cancer to come back It sounds pessimistic, but let’s be real: even when you are moving on with your life and enjoying survivorship or remission, you still worry about cancer from time to time. Now that I am done with treatment I feel somewhat powerless. Brain surgeries...
Pets and cancer
Can owning a pet count as palliative cancer treatment? I’ve heard there is a correlation between owning a pet and a reduced cancer risk. It has something to do with pets helping lower stress and blood pressure. I no longer worry about getting cancer (HA!), however, I do want to improve my overall health–and maybe...
The birth of the brain tumor hashtag on Twitter (and how it was inspired by the breast cancer community) #btsm
When it comes to team spirit, the breast cancer community has got it going on. This community certainly has enough patients, survivors and caregivers to give the community a boost when breast cancer accounts for a little more than 10 percent of all cancer diagnoses each year. And when it comes to advocacy, the brain...
Join my team for the Bay Area Brain Tumor Walk
Dear friends, family and people we don’t know: Are you ready to join a crew so fierce that brain cancer cowers at the mere mention of our name? Team Glioma Girls invites you to join us for the Bay Area Brain Tumor Walk in Golden Gate Park in San Francisco, California, on Saturday, May 5,...
To have a slow-growing brain tumor
Three and a half years after my diagnosis my health care system finally hired a neuro-oncologist for the Sacramento area. You’d think the California state Capitol would have a fancy oncologist a bit sooner than that, but apparently neuro-oncology isn’t a popular field (what with brain cancers representing only 1% of all cancers). Kaiser would...