David, Part 1: When your brain tumor friend starts hospice

PHOTO: A bunch of brain tumor advocates in Washington, D.C.

It has taken me a few weeks to process an experience which might turn out to be one of the best things I have ever done in my life. I can't fit this all into one post, so here is part one.

David, Part 1

David. I mentioned him in my last blog post.

David and I have known each other through the Internet for nearly eight years. He was diagnosed with a gemistocytic astrocytoma in the right parietal lobe just three months after my own diagnosis. (Note: We have the same initial diagnosis, and have a tumor originating in the same area of the brain--though mine is in my left parietal lobe.) We had the same presenting symptoms. Same seizure patterns. We have jokingly referred to each other as brain tumor twins. We even have the same last name. (Not related!)

For as much as we have in common clinically, we are two different people. David is in his mid-40s. He is a financial analyst for a publicly traded company. He lives in Minnesota, don'tcha know? He was married to a woman named Kirsten. They never had children. Then a few years ago she died in the hospital from a horrible infection that she picked up while in the hospital!

Oh geez. How much craziness can a man endure?

After years of Internet friendship, emails, occasional calls, and Facebook friendship, in 2014 David decided to volunteer with the National Brain Tumor Society for their big advocacy day in Washington, D.C., and we finally met in person. (We also tried to change the world for all people with brain tumors. Yada, yada.)

The following year we kept in touch, and then he emailed me on March 27, 2015.

I wanted to tell you about my scan before blowing it out on Facebook. I'm sensitive to the impact this news has on others and am trying to manage that. Since we are both Gemisto buddies, I know this news will impact you too. I just want you to know I'm thinking of you and hoping for all the best for you! Here is my note to my folks with the details...

Below this message was an email he sent to his parents about a fall he experienced. He chalked up the fall to his general clumsyness, but after feeling weird for a few days he checked in with his neuro-oncologist at the Mayo Clinic who said he should come in and get looked at. Sure enough, his brain tumor was acting up.

A public service announcement

I need to stop here for a moment and say something.

There are more than 130 different types of brain tumors, and our brains are complex organs. As a brain tumor patient, your symptoms and side effects are as varied as every possible function of our brain. Some people experience memory loss, while others experience personality changes. Some have problems with their vision, while others may suffer hearing loss.

The parietal lobe is responsible for a variety of functions, and both David and I have had issues with sensory processing (sense of touch), balance and spatial navigation. People who know me, know that I trip and fall a bit more than the average person. I have no idea if it is related to my brain tumor or if I would be this clumsy normally.

That all being said, I hope you can understand why hearing from David that a fall is what triggered his physician's concern was so valuable to me.

Back to David

Over the coming months David kept me and all his friends up to date through his Facebook page and his blog on Caring Bridge. He had full-blown glioblastoma.

He took more Temodar. It didn't work. He was put on Avastin. That didn't really work either.

When May came around he decided to volunteer again for the advocacy day in Washington, D.C. All of the advocates were excited to see him. I was excited to see him. I needed to see him.

We did our trainings, we had dinner, we did the advocacy work, we went to an after party, and then suddenly, in a rush we realized we were going off in separate directions. Me, to return to my room and take off with Brett. David was headed off to a dinner with a group of advocates.

We turned to say goodbye to one another, and I looked at his face, and he was looking at me, and suddenly we both started crying. At that moment I felt like I could read his mind. It was strange and it was powerful. We knew we were saying goodbye to each other, and that we would never see each other again.

I will be back next year, he said.

Of course you will, I said. See you then.

Tears and tears.

Later than night I texted him and said something like, "That was the weirdest fucking goodbye of my entire life." And he was like, "That was insane, and very special." And I was like, "I know. I know."

I kept up with David. I knew his doctor was going to have him try the Optune device, to see if it would have a positive effect.

By July I couldn't stop thinking about him. It was selfish. I knew whatever was happening with him could be what would happen to me should my tumor decide to reactivate and go on another growth spurt. But I was also thinking about David too.

I found myself staring at my computer at work with a lump in my throat. I found myself crying sometimes. Crying at my computer. Crying in the shower. Crying while I worked out in the gym. My eyes hurt. My ears hurt. Every part of me was sad.

On September 13, I texted him:

LIZ: Wassup, David?! I've been thinking about you a lot, and I want to know if it is OK if I write about you in my next blog post.

DAVID: Of course it is! It is just so damn scary, this is!

LIZ: Is it? What's your state of mind right now?

DAVID: Oddly I am at peace with everything. I am just happy to be able to do the things. Enjoy. Watch football and have special dinners with friends.

LIZ: That's where it's at, right? It really comes down to what matters most.

So then I wrote this blog post, called Permission to Live. Then David texted me:

DAVID: I just read your blog post, I am so moved, honored!!! Wow, what a tribute!

Then a few minutes later, David texted me a PDF of the notes from his most recent visit with his neuro-oncologist along with JPGs of his brain. He told me he would start hospice the following week.

To be continued...

Sorry for the break in the story, but I can't write anymore right now. I will share David, Part 2 with you all soon.

P.S. Sorry for typos, I just needed to get this out.