A Phone Call No. 9

“Hi, this is…from UCSF. I’m calling about the cognitive trial?”

Boy, when Dr. Rugo sends an email, things happen. She was annoyed that no one had contacted me yet about the trial. “Yes,” I say. “I’ve been expecting your call.”

“Well, is this a good time to talk? I’d like to tell you about the study. ”

“Sure,” I say.

This is what they’d like to do:

Before chemo, they’ll do two brain scans, an MRI and a PET scan. Then they’ll do a blood draw and measure my estradiol, the amount of estrogen in my blood. They’ll also check to see if I have a genetic marker for Alzheimer’s. They’ll tell me the estradiol result, but not the Alzheimer’s result. Maybe they think that telling me I have a gene for dementia will make me stupid prematurely? Then, they’ll do some cognitive testing, memory games, that sort of thing, not so stressful as the SAT or the GRE.

They’ll repeat the scans and testing 1 month after chemo has begun.

They’ll do cognitive testing again, 9 months after chemo starts.

And finally, scans and testing 13 months out.

The nice young lady from UCSF will send me a consent form, and set up the appointments. Oh, and they’re giving me $200 for my trouble. Years ago, I pitched a story about being a human guinea pig to several magazines. I never sold that story idea, but now I’m getting to do it anyway. Who knew that cancer could be so profitable?


About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
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5 Responses to A Phone Call No. 9

  1. Catherine says:

    I wish I could’ve been in a trial like this. Good for you for contributing to science even though the circumstances suck. xo

  2. john cassidy says:

    There ius no one more courageous than you

  3. john cassidy says:

    You are a fighter. But, it appears that you have a long road in front of you. Keep in mind that your health trumps all other concerns. But, also keep yourself distracted from the cancer and the treatments. Thank God that you live in a state where medical mj is allowed. Try some. And, maybe, tell Pete that the burden of effort of moving and being a parent might need to shift a bit. Oh, and muscle mass. The more that you have of it going in to this, the better off you will be. A suggestion: Not so much aerobics, but more resistance training until the chemo starts. And, lots, and lots of protein. And, like sumo wrestlers, rest after each meal.

    • leftbreast says:

      John, I’ve been doing a brisk hike almost every day after I drop Erin at school. Also bridges (easier than real sit ups because I’m still a little sore from surgery). Will def do medical mj, but probably in cooking. Can’t inhale. And Pete and I talked just today about more even sharing of household stuff, plus friends here are coming out of the woodwork to help. So fingers crossed.

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