Thursday, April 15, 2010


Yesterday, after hours of trying, my PICC line wouldn't give blood. When we removed the dressing the site looked sore and irritated. My nurse and I both gasped. We scheduled the removal of the PICC, and the installation of a portacath for this morning.

A strange powerlessness takes you when you undergo long-term care for a major health ordeal. One procedure follows another and you accept it as a matter of course. You decide without thinking.

This morning the prep nurse, by way of conversation asked "Are you just tired of the PICC, is that why you are replacing it?"

I said, "No, the line wouldn't draw, and the site is irritated."

She said, "I can't say about the site without seeing it, but if the line wouldn't draw, did you try TPA?"

We hadn't.  Apparently, TPA is a medication for stroke patients. When given within the first half hour of a clot-based stroke it lessens the damage. It also effectively restores catheters.

Hearing about the TPA for the first time, I felt a surge of power. Honestly, I haven't felt this for some time. In that moment, I knew I could make a decision about whether or not to have the procedure. I could direct the course of events.

I returned to the bone marrow clinic. The PICC site still looked angry, but had improved. My nurse administered TPA, and now the blood is flowing. We'll continue to watch the site, but for now, today, no new hole in my body.

Since starting this adventure I've had 3 PICCs, a central line, and a portacath. From what my health-team says, installing and removing these things is commonplace, and I think because it is so common we've become flip about it. These procedures are not major, but they are very unpleasant for the person undergoing them, and should be avoided!

But besides being flip, an underlying cause for too many procedures is consumer culture. I'm not kidding. Even in medical appliances there's disincentive toward maintaing the good and serviceable when there is a promise of a new modern gadget on the horizon. In catheters, this promise is the portacath. It dangles there, like a utopia of close-to-normalcy (you can go swimming!). I was seduced when we installed the first portacath, I think. I held the idea that it was better than the central line, and so when I had trouble with the central line, instead of saving it I leapt to the newer better thing. That decision turned out to be a disaster—the portacth never healed and had to be removed. This is how I wound up with my humble PICC. To think, I almost fell for it again.

Yesterday I had an MRI. High-dose steroids, a mainstay of conventional cancer treatment, can cause necrosis in the joints. I took high-dose steroids during Consolidation II and am still taking steroids now, but at a much lower dose. It is not too likely I have necrosis. Hopefully the MRI will rule it out as a cause of the hip-pain.

I love being in the MRI machine. It makes amazing, hypnotic sounds.

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