Daily Archives: March 12, 2020

More of me

Mother Linnea…striking a pose

I had another biopsy on Wednesday. And y’all are going to be proud of how it went down..

When they wheeled me into the procedure room and introduced me to the operating surgeon, I gave her my spiel. How I’d been participating in clinical trials for more than ten years now but had only just learned that there is a significant difference between a biopsy for research and one for clinical assessment. I said that I considered an intrathoracic biopsy to be a big, big ask and that I believed it only fair that my tissue be shared with me. I understood the sponsor was paying for the biopsy, but that didn’t make it any better. I still felt like a cow being sent off for branding. And that there should be some implicit quid pro quo but as I had signed a contract I was now bound to donate a piece of me. I explained that some extra tissue for MGH labs might yield information that could be extremely helpful to my case, and that if at all possible, I wanted her to go for it. And lastly, that the language in the consent form was unnecessarily vague and that this endeavor was bullshit.

Well that surgeon listened to me. Better yet, she heard. This time, instead of one small plug, MGH got two.

The resistance starts here–with each and everyone of us. We don’t have to accept the status quo and this was a lesson in the importance of talking not just to the policy makers (sponsors) but to the doers—other members of the team. I mean, it’s difficult to ignore a bald lady in a johnnie when she’s sitting right in front of you talking about the plunder of her own tissue.

So, as I used to say to my children in certain situations that involved small victories–yea for our side. And what’s mine is once again–mine.

As it should be.