Permission to live: Advocacy burnout

I am tired of fighting.

Cancer nomenclature is full of words depicting an epic battle. We talk about the "war on cancer." A person in treatment is "fighting cancer." If you live, you are a "cancer survivor." And if you die from this disease you've "lost a battle" with cancer.

From the moment I learned what I had in my brain was a malignant brain tumor I was ready for battle. I was down for the fight. No one had to convince me to do anything.

Friends have commented on how inspired they have been by my attitude towards cancer. For a long time I felt good when people said nice things about me and my attitude. This encouraged me to keep on fighting.

Being awesome at brain cancer

In 2012, when my chemo treatment ended, I was lost for about one month. Even though my treatment had ended, I still had cancerous cells in my brain and I did not like the idea of sitting idly by while those cells remained dormant, or grew into the billions before they were detectable by the naked eye through a black and white MRI picture.

It was at this time that I started to get heavily involved with advocacy in the brain tumor community through the National Brain Tumor Society. This work brought me to my state capitol in Sacramento, CA, and to the nation's capitol in Washington, D.C. I met passionate people from around the country who were fellow advocates in the brain tumor community and I knew that I was not alone. Many of these people were representing a family member or friend with a brain tumor. Some of their family members had died. There were just a few survivors advocating at this level, and because of that I felt my point of view was extra important.

I never said this out loud, but I told myself that I was going to be so awesome at brain cancer that I was going to win an award for being awesome at brain cancer. (And in 2013, I was presented with the Community Leadership Award for being awesome at having brain cancer.)

It comes with the territory...

As a brain tumor advocate, occasional volunteer with Imerman's Angels, cancer blogger and co-founder of the #BTSM tweet chat, I have met many people with brain tumors. I venture to say that the only way you could know more people with brain tumors than I do is if you work in the field of neurology (or work for the National Brain Tumor Society or similar organization).

The hardest part of being this engaged is that death comes with the territory.

We can't all live forever, and my brain tumor friends span the spectrum of diagnoses and malignancies. The first few people I "knew" who had died were people I met once and barely knew. Then I started losing people who I had communicated with via the Internet, or I had read their blogs. Then there were people I had met in person or talked with on the phone. Then there were people I had spent a day with doing advocacy work, or who I talked with often.

I know the people who felt their deaths most of all were their friends and families. And when I cried for each of them I felt guilty. My grief was real, but I felt bad crying because who am I to them in the grand scheme of things?

But then Emily Morrison died. I really lost it. She meant a lot to me, and I wrote about her here. I still think about her often and sometimes when I am bitching about stupid shit she pops into my mind and I stop complaining because, "Would Emily be complaining if she was alive right now?" Nope.

I get sad sometimes

I have another brain tumor friend who means a lot to me: David. I don't even know if David knows how much he means to me, but I don't care.

David and I have a long history together. I think he was one of the first "random people on the Internet" to comment on this blog, back in the day when it was still hosted through Blogspot. We've emailed a lot. We are friends on Facebook. We've talked on the phone. He volunteered with the National Brain Tumor Society in 2014 and 2015 for the big advocacy days in D.C., so we have hung out in person and shared amazing meals together. And now we text message each other because we are friends now. Real friends.

And David has been having a hardcore recurrence. He's gone from a gemistocytic astrocytoma to a full on GBM. I've been following his progress. And now...Now I get sad. There are times when I can't stop being sad, thinking about him. And of course, thinking about him means I am thinking about my own mortality. And then I feel guilty for selfishly thinking about myself. It is a vicious cycle.

A few months ago I started to wonder if I should be doing all these things I am doing in the brain tumor community. Through this work I am fighting and fighting and fighting. I have been fighting since July 2008, and all of this fighting has taken a toll.

I am tired of fighting

Last week, on a conference call with the National Brain Tumor Society, I resigned my position as the California lead advocate. They were very understanding and thankful for my time with them. David Arons, their interim CEO, outlined some of the amazing things that were accomplished due to my work with them, and that got me choked up.

They said I could come back any time. I told them that I loved them. None of the reasons I was leaving had anything to do with them, it was just me. All of this work had finally caught up with me.

So here I am. Saying this on my piece of the Internet. And maybe you are still reading this far.

I will still:

• Keep blogging!

• Keep being the co-moderator of the #BTSM tweet chat.

• Continue serving on the Medical Advisory Board for the National Brain Tumor Society.

But now I will start focusing on:

• What I was doing before this diagnosis. I really can't remember what I had planned to do in my late-20s, early-30s.

• Setting goals for living and doing things that make me feel alive.

• Being a better wife and partner to Brett.

I think those last three bullet points are what I can do best to honor all of my friends. But more importantly, myself.