My grandfather has a brain tumor too

A few months ago I found out that my maternal grandfather, who is 88, has a brain tumor. When I learned that I was like, "Holy smokes! I wonder if brain cancer is hereditary--at least for my family." There is no real known cause of brain cancer... there are just theories.

I immediately called Super Awesome Nurse and told her all about it and wondered if there where are links, warning signs, anything I should do. Should I go out and ask all my blood relatives to get brain MRIs?!

She said no. Brain tumors are not familial. Plus my grandfather is 88; something will eventually get you if you live long enough.

My grandfather lives in New Jersey and lives with my aunt and uncle. I haven't seen him in at least 18 years. I have very fond memories of him from my childhood.

When I found out about the tumor I asked all kinds of questions like:

  • Did they do a biopsy?

  • Are they going to remove the tumor?

  • What is the pathology?

  • What's the treatment?

But from what my aunt and uncle say, my grandfather's doctor's say is he is too old to withstand a brain surgery or a biopsy and so they performed radiation and gave him chemo. Of course, I was freaking out when I heard this thinking, "How can they give radiation and chemo when they don't even know it's cancer? It could be a benign tumor!" But I feel powerless here on the west coast.

I guess my grandfather accepted all the suggestions his medical team offered. And from what I hear he hasn't put any effort into getting well. My grandmother--his wife of 45+ years--passed over a year and a half ago. Maybe he is ready to go join her. I don't know. Sigh.

My mom is getting ready to visit New Jersey and I might join her. But I am scared because I haven't seen that side of the family in a long time. And I am afraid my visit will seems superficial. "Hey grandpa, I haven't seen you in a long time but now that you are dying I am right by your side!"

I am also afraid that seeing my grandfather on hospice, with a similar (if not the same) malady will only remind me of my own mortality. I am afraid I will find it too hard to absorb, and I am afraid that will come off as shallow and self-indulgent.

Then all of this stuff makes me remember the time I visited my old friend Logan Whitehurst just three weeks before he died from brain cancer (medulloblastoma) in 2006. I remember what he looked like, and how he didn't talk or barely open his eyes. But I stroked his hand with mine, and he once mumbled, "That feels good." And if it felt good enough that he was able to get that word out of his mouth in the state he was in, then maybe it is worth it to get over myself now and see another dying man who might get more out of seeing me then I will ever know.

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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