Lobbying with my emotions: brain tumor advocacy is conjuring up all kinds of dirt

A typical young adult cancer experience

PHOTO: Me, Rep. Laura Richardson, and Rick

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 & Johnson baby shampoo, but out of nowhere I found myself in an uncomfortable position, fighting back tears in the most awkward of situations.

The day before, during advocacy training, I looked around at all the other brain tumor advocates and wondered if any of them would be crying on lobby day. It is not easy for many people to talk about the neoplastic tissues in their brain. Me? I had my 1-minute brain tumor story down to a science: just enough detail to be shocking, but brief and upbeat enough to keep people from freaking out during a meeting.

My lobby teammate for the state of California included Rick from Long Beach. He is a laid back fellow with an interesting brain tumor story of his own. And like me with this blog, he turned his experience into something positive.

Come lobby day we were prepared and knew our roles. I did introductions, Rick gave some brain tumor facts (e.g., more than 612,000 people will be diagnosed with a primary brain tumor in 2012, and 7,300 of those people will be in California), then I told my quick brain tumor story and launched into how 24 months of Temodar is now keeping my tumor at bay.

Then we went into our asks: we wanted our legislators to support the Cancer Drug Parity Act (i.e., treat oral chemo the same as intravenous chemo), and sign onto the support letter for appropriations for the National Institutes of Health (NIH).

Things went well at the offices of Senators Boxer and Feinstein. The meeting with my local Congressman, Tom McClintock, went as I expected. His aid gave us smiles and head nods, seemed curious about oral chemo parity, and danced around the issue of giving more government money to the only organization who is even capable of providing money for groundbreaking brain tumor research. (I told the aid to have the Congressman call me any time, and I would be happy to talk to him in person when he was in the district.)

But then we visited Congresswoman Laura Richardson from District 37, representing the Long Beach area. Rep. Richardson is Rick's congressperson so I expected her to mainly focus on his story--and she did... But she came back to me later and asked more questions about my brain cancer story. Maybe she's just a really good politician, but she really seemed like she cared about what was going on with me. (I can't even vote for her!)

She shook her head at me in disbelief and said, "Wow, your parents must be really proud of you."

I didn't know what to say. A few thoughts went on in my head…

I have no idea if my parents are proud of me.

This thought triggered sad feelings. Above all else--the brain tumor, the cancer diagnosis, the craniotomies, the atta-boys I get from my friends, colleagues and strangers from the Internet re: my attitude--I have no clue if my parents are "proud" of me.

Now, I can tell you with certainty that mom seems to be proud of the work I do. She always seems interested when we talk on the phone and I know she tells other family members about what I am doing. So yes, she is proud of who I have become. I'm a nice person, OK?

But I don't know if she is proud of my cancer experience. I always let her know what is going on when there is new information, but she never instigates the "how is your head?" ask. To be honest, I think my cancer scares her, and makes her sad. I know for a while she was depressed and she wished she was (thought she should be) here for me, but I pushed her away because I wanted to handle things alone (with Brett).

I'm an adult--DAMMIT--and I can handle things by myself or with the people I choose to surround myself with, just like I had been doing since she left me when I was 17. Maybe this explanation of my early adulthood is unfair, but emotionally this is how I've always felt and today I am writing about emotions, cancer diagnosis, and how that congresswoman drew it all out of me in one rhetorical questions (re: parents must be proud).

And as for my dad... I have no idea what he thinks. He was never really part of my life. I tried in my early 20s to talk to him on the phone and get to know him. I even built him a website once for a business he was running. But that was the extent of our relationship; it was transactional. I really felt like having a conversation with him is like working out the details of a business deal. And by "deal" I mean something shady, on the sly. When my mom went missing in my early 20s I tried to compensate by getting to know my dead-beat dad. I don't know why I thought this would somehow make up for the first 25 years of my life.

So when I ended up in the hospital from seizures and found out about the tumor, someone contacted him and he drove up from southern California to see me for a few days. Both he and my mom showed up at the same time--in my house. OMG!

I had never seen the two of them in the same room at the same time, let alone in my condo, that they had never been to. Holy fuck! As you can imagine, having two people who contributed 23 chromosomes each to my DNA in my house was more stressful than finding out only a week earlier that I had a brain tumor.

My dad left after that weekend and has never contacted me since. In 2010 I called him a few weeks before my wedding to see if he was going to RSVP, but he "didn't think he was going to make it." Didn't think? Not going to make it? Really?

Long story short: I have no idea if my father is 'proud' of me, but in my mind he has no right to be proud. Because nothing of who I am reflects on him, his skills as a parent or of who he is as a person. Pride is feeling good about something you did. He never did anything, and he certainly never reached out during my entire cancer process. I never got flowers. I never got a card. He didn't come to my wedding. What a douche.

But I can't lie, there is a little girl inside me who wishes we could all go back in time and I could have had the childhood every kid deserves.

Reality: I know who is proud of me

My husband Brett is always proud of me. One day, in a moment of clear, sane, healthy thought, I realized I no longer have "daddy issues" because I have found the most wonderful man in the world to share my life with. He loves me, loves me, loves me. Takes care of me. Shares every moment with me. Is happy for me when things are good, and is pissed with me when things take a turn for the worse. He holds me when I cry. Picks me up when I fall down (and believe me, a tumor in the parietal lobe means I fall a lot). And he is the ambassador and enforcement agency for my quality of life.

So all that went on in my head in the one second after Congresswoman Richardson told me my parents must be proud.

"I think they might be, but I know my husband is proud of me," I said.

She went on a bit about how 'amazing' we are, which is always cool to hear, but honestly, it was hard for me to focus at that point. That congresswoman struck a chord in me, and as I fought off the tears I told myself to knock it off, emotions aren't cool when you are in a meeting with a freakin' congresswoman. (And as my friend Naj says, when it comes to your professional life, "Never let them see you cry.")

Rep. Richardson had already signed on to the appropriations letter for the NIH, and thanks to the outreach from Rick, myself, National Brain Tumor Society, she was in full support of the chemo parity act. She said she would talk to the author of the bill, tell others about it, and as a special favor to me, she was going to show my congressman a photo of me with her and tell him he has a constituent who needs his support. Boo yah!

Who's been supportive during your cancer/tumor experience?