Archive for February, 2014

posted by Amy on Feb 22

After 9 1/2 months on the new cancer “miracle drug,” called Kadcyla, I’m moving on. I’ve had several scans that showed what could be characterized as “progression,” but until the one I had last Tuesday there were never any new lesions. This time a couple of new places lit up, and some established areas of concern are more active, so my oncologist and I decided I should move on.

I’m not sorry to see Kadcyla go. I’ve had neuropathy, breathing problems, and some other side effects on it. In fact I suspect that the drug might be causing some of the areas of concern in my lungs. In a little over 32 months of cancer treatment I’ve had medications that can cause lung problems for all but 8 months.

I get PET/CT scans. They work by combining the imaging of a CT scan with pictures of areas that are more glucose-avid than surrounding tissue. About an hour before the scan I get injected with radioactive glucose. The machine traces where the glucose goes. Some organs, such as the brain, kidneys and bladder, always suck up glucose. And cancer cells love it.

Increased avidity is not diagnostic of cancer. It just means there’s inflammation. But then you have to decide what might be causing the inflammation. With me, since I have metastatic cancer, that’s a prime suspect. But, as my oncologist said when I met with her Thursday, “we’re treating an image.”

That is, and has always been, the issue with me. I’m a new kind of cancer patient who was diagnosed solely with medical technology–images and biopsies. I feel and look great. I am strong and full of energy. I don’t look or feel sick. I’ve never had any impairment caused by cancer itself, only by the treatment. I don’t get tumor markers in my blood, so I can’t be monitored that way. There is a huge amount of dissonance between the normal ways of assessing health and my true status as someone with a terminal illness. Obviously that is preferable to feeling sick, but it’s also weird. I live in a twilight zone.

I thought I could shake it off and keep forging ahead with all the work I have undertaken as a PhD student and teaching assistant, but because of anxiety about the scan I skipped class last Wednesday. Then Thursday and Friday I did basically nothing except knit. (At least when I knit I make something tangible. It’s better than surfing the web all day.)

I got no treatment at all on Thursday. My oncologist and I had settled on a new course of treatment, but when I went back to see my nurse she explained that one of the drugs is too dangerous to administer through the small veins in a hand. If I’m going to be getting it, I need to get a port. So I’ll go back and talk to my oncologist on Monday, and start something else on Friday.

Thursday night I went to church. (My congregation regularly meets on Thursdays.) I was happy there. Being with people I know and love, moving through the liturgy, thinking about something bigger and more important than myself, singing and praying, brought me joy and peace. I remembered that there’s no cause for alarm. “From dust you were made and to dust you shall return” is oddly comforting. If I do it right, I can pack an entire lifetime of wonder and gratitude into one hour, or even one minute. The “really real” exists outside of time. It’s accessible in every moment of now.

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