Can you be OK with the unknown when you will have cancer for the rest of your life?

I take a chemo pill one week a month to destroy a cancerous brain tumor. By the end of the week I am exhausted, tired and nauseous. And I'm cool with that.

During the following weeks my strength returns and I start to feel almost normal. And I'm cool with that.

By the third week of the month my blood tests reveal that my platelets are low, and my blood cell counts are abnormal. And I'm cool with that.

My immune system is weaker than that average person, but I haven't gotten sick. And I'm very cool with that.

I am more tired than healthy people my age and I decline invitations to participate in social activities. And I'm OK with that.

I take anti-epileptic drugs that cause weight gain so I exercise often to combat the side effects. I stay about the same and don't gain or lose weight. That's kind of discouraging, but I guess I am OK with that.

People talk about how tired they are and I want to smack them upside the head and say, "You think you're tired?" But I restrain myself. And I'm cool with that.

My idea of quality time with a significant other is snuggling on a couch watching old episodes of Star Trek: The Next Generation. And Brett and I are both cool with that.

I have only one more month to take chemotherapy before I am done. And I'm cool with that.

Then what happens? It’s, “wait and see, wait and see.” If anything changes for the worse that means radiation. And I am not so cool with that.

When everything turns out fine, scan after scan, over the next year, I'll still have to think about this for the rest of my life.

Shouldn't I be used to this by now?

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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Who am I without chemotherapy?

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It will kill me if I die before him