It's just one week. Right?

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I start cycle 14 of Temodar tonight.My red blood cell count is a little low, which makes me "a little anemic," but it is not enough to be concerned about, says Super Awesome Nurse.I've never been told I was anemic before. I guess that's just part of this cancer experience: a bunch of things happen to you that you never thought would happen to you.Let's take a nostalgic trip down memory lane: Since your diagnosis, what has happened to you that you thought would never happen?These could be good things, bad things, random things.Me?I've had seizures. I've peed my pants. I had my skull cut in to (twice) and my brain cut in to (twice). I've suffered damage to my vestibular system. I re-learned how to walk. I had to use a cane for a few weeks. (That was just last year!) I wondered how soon I could die. I made a will. I take lots of pills and get amped up just talking about the brain and the central nervous system. I am 90% open and positive, 10% shocked--still.When I was first diagnosed and didn't have medical coverage through an employer (because I had just started a new job) all of my friends came out of the blue to support me. This made me feel really good--I don't know what I would have done without them.But now it is has been more than a year and a half since my first seizure and I think people have forgotten about me. Or maybe they think I am cured? Or maybe they're scared of cancer and being around me is just too much. I don't know.Or maybe this thing (brain cancer) that made me really special for a while isn't as much of a novelty anymore. I am doing "so well" that I am nothing to be worried about.I can understand that point of view... but I am me and it is hard to not think about it when it is you. I am on auto-pilot when I wake up in the morning and take pills to keep my brain from seizing. But at some point I remember, "Oh, shit. I have brain cancer."This reminds me of something I wrote after my first brain surgery. The post is called, "Oh yeah, I have brain cancer." It's funny if you read that, and then read what I am thinking right now because I still haven't gotten used to the idea that I have brain cancer.So what are the good things?The number one good thing in my life is Brett and his never ending love and kindness. He is the most patient person in existence. He can do anything. He is a chef, a nurse, a ninja, whatever. He takes the spiders outside, and carries all the groceries up the stairs. He helps me put my clothes on after shoulder surgery. He picks the scabs out of my hair after brain surgery. He puts the sippy-straw in my juice when my head hurts too much to move. He rubs my head at night so I can fall asleep. I love the way he gets excited when he sees cats and puppies. I love knowing that if we walk into a Target or a Wal-Mart the first section we will visit is the toy aisle so he can see if they have any Star Wars or G.I. Joe on sale. I love his skin. I love his freckles. I love that he looks four years younger than me even though he is two and half years older than me.I am never afraid of life with cancer because I get to spend my life with Brett.The only thing I fear is leaving him alone. And it is for him, I choose to live a long life.

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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Do you ever justify bad behavior because you have cancer?

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The things your loved ones put up with