November 03, 2022

Love You, Dad

47 minutes

“No matter what clinical trials are conceptualized, no matter what different projects and drugs are developed, you need research to get to a place where these things are thought up, where things are coming into existence.” During her experience with glioblastoma as a caregiver, there were many things Amber Barbach wished she had. Now, she’s giving those things to others so their experiences won’t reflect hers. In this season finale of Glioblastoma AKA GBM, Amber talks about how her family dealt with her father’s diagnosis and subsequent surgery. She peels back the curtains on founding GBMRO.

Hear me talk about:

Finding out. My dad and I didn’t have the best relationship growing up, but after I left home, we built a foundation for a great one. I didn’t know he had cancer until my mom called me months after the diagnosis to tell me he’d just had surgery for a brain tumor. I was in total shock. I’d been teaching in Spain at the time, but I immediately took the next flight home.

Complications. I found my dad halfway off the bed when I finally went upstairs. The hospital had sent him home two days after the surgery. My mother and I had to call an ambulance to take him back to the hospital the next day, and getting him back into proper care was a nightmare. They did another MRI, found that he had a brain tumor. I couldn’t process any of it.

My dad’s stubbornness. During his stay at the hospital, my father was advised to call the nurses when he needed to use the bathroom. He didn’t like that. He attempted to go by himself, which ended in disaster. At home, he was advised to use his walker. He didn’t. This resulted in a trip to the hospital for a head injury that thankfully didn’t cause any brain bleeding.

Hospice care. He gradually became more ill, due to a lack of treatment for various reasons, to the point where we had to hire a private nurse to take care of him when we couldn’t. It was very stressful being a caregiver at 22 years old, but I committed to it. Eventually, my mother and I decided to put him in hospice care. Neither of us were there when he passed - I think he wanted it that way.

Starting the nonprofit. I was, understandably, a mess after my dad died. It had been the worst year of my life, and I was so affected that I didn’t want anyone to ever have to deal with a situation like this. I started looking into nonprofit organizations focused on glioblastoma. They were very few in number. I thought to myself, if you want something done right, you should do it yourself. And so I started the nonprofit. It was an effort to build what I didn't have in hopes that I'd be able to help people with community, information, and overall support.

What’s Next?

The next project GBMRO has been working on is a pediatrics project. They are tentatively partnering with another great nonprofit to do a collaborative grant. “My goal is to make brain cancer as aware in society as breast cancer is,” Amber Barbach shares.

As always, the information that is discussed in Glioblastoma AKA GBM is not meant to treat or diagnose any disease. What we and our guests share are personal stories of what has worked for the individuals in question, and should not be taken as medical advice or opinion, and is not a substitute for medical advice. If you have any questions about your own situation, always consult with your medical provider and healthcare team.

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