Erin: founding member

I have a group of girl friends called the Glioma Girls. We all have brain cancer.

PHOTO: Liz and Erin (RIP)

PHOTO: Liz and Erin (RIP)

Actually, the name of the group was created by Erin, the founding member. She says she wouldn't have created the group if it wasn't for meeting me... But I doubt it since she recruited more than half of our ranks.

Erin has a glioblastoma--a grade 4 Glioma. She found out about her cancer just 3 months after having her second child. She had her first brain surgery on July 4, 2009. I met her husband Steve at a brain tumor support group.

Erin and I became friends through email and our blogs. She wasn't a fan of "poor me" attitudes and I think my blog served as a screening tool so she could make sure I wasn't a weak sauce victim who'd waste her time and energy with a sob story.

Since we only live 20 miles apart, I've met up with Erin a few times, and we've often talked on the phone to share notes.

She openly speaks about our mortality. She has asked me who I think has it worst: me or her? A doctor would say her because her tumor type is more aggressive and malignant. But she thinks she has it better than me. She can use her time to focus on the important things in life like her husband and children. She's traveled the world and has close friends and very close family. She's grateful for the rich life she's led.

She said she felt bad for me because I will never know the joys of having children. And since my tumor is less aggressive I still have to deal with pretending to live a normal life while knowing death is around the corner any year now. (I can argue against her opinions but that isn't the point of this post.)

I am writing all this because Erin's health has taken a turn for the worse. She's having a hard time writing and hearing. She's taken a number of bad falls. Hospice services are now part of her routine.

I don't know what to think of all this. Hearing about her current condition makes me sad for her family. And it makes me mad. And I feel guilty--why her and not me?

And I feel guilty about ever complaining about my own situation. I think most of us astryocytoma types feel this way. A mix between fear, guilt and impending doom with a sigh of relief that we will see tomorrow and not have to say goodbye just yet.

Erin will probably never read this post because, from what I understand, it is hard for her to read right now.

But in the spirit of Erin and her outright frankness, I feel it is my duty to admit that she will be next, in a line of amazing people I've known, to lose their life to a brain tumor.

Notice I didn't use the word victim. She isn't "falling victim" to anything. This brain tumor is just taking her life. Bit by bit. But Erin is still Erin and will always be the same Erin who intimidated me when I first met her.

"Are you intimidated by me?"

"No! ... Why do you ask?"

"It just seems like I'm not the person you were expecting me to be."

No Erin... You are even better than my expectations.


Update: Erin died after living with glioblastoma for many years.


Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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