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.

xo

13 responses to “More of me

  1. Colleen Broughton

    Linnea, EXTRA Yes to – The resistance starts here – yea for our side – what’s mine is once again–mine

    – As it should be

    Sending support to fuel the resistance, boss tour own tissue (and learn from it) and #KeepGoing. 🌀🌀🌀🌀🌀🌀 👏🏻👍🏻✨💖

    On Thu, Mar 12, 2020 at 2:13 PM life and breath: outliving lung cancer wrote:

    > linnea11 posted: ” Mother of the biopsy…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 be” >

  2. Wow, Linnea. Your psychic energy is amazing. That you can muster that reasoning and directive with effective results while bald, in a johnny, and in considerable emotional turmoil is astounding. Yes. One for our side. Your side. And their side..if they get it, they will eventually prosper as well. ❤️❤️❤️❤️

    Sent from my iPad

    >

  3. Marie Hazelton

    Thank you, you are always thinking ahead of the curve. May you feel well soon!

  4. Right On!!! ✊🏼❤️

  5. You are such a freaking inspiration! I hope somebody writes an article about this! Maybe in the BMJ’s “What your patient is thinking” series. Game for it?

  6. Karen Cunningham

    Rock on, Linnea! And we will, too! All of us need to SPEAK UP!

  7. This is great, Linnea! Good for you. Many consent forms are awful (including a misleading one on the last trial I participated on at NIH!)
    Hope the procedure wasn’t too bad.
    Take care.

  8. I am still amazed that a person going through so much can be so articulate and fiercely defend her rights. I take my hat off to you and continue to pray that you will come out of this in the way that you are fighting for.
    Blessings.

  9. Yay! You go, Mother!

  10. Wow….!!!! I am in awe of you, Mother Linnea!!!! You are a force to be reckoned with!!!! I hope and pray that the tissue that MGH will be testing will be beneficial to your current and future treatment plan. Blessings & Love, Susan

  11. So amazed by your self advocacy! When I was at my worst, I just went numb and robotic and was determined to just do as told and not think. Thinking was too hard and stressful. How did you find out the difference in the biopsies! However, good for you!! Your strength and perseverance is just amazing.

  12. That’s what warriors are wearing this days! Battle on (and while getting a biopsy, no less)! xoxoxoxoxo

  13. I am a patient advocate in kidney cancer, and have been involved in the development of a clinical trial. Most recently, I reviewed a ‘plain language’ consent form and was horrified to see how long it was, as that alone is a sure way to prevent people from reading it. I took particular interest in the ‘optional research’ which might be asked of patients, and looked especially for reference to genetic and/or genomic testing. The latter could make all the difference in the treatment responses in the trial, and in generally available treatments.

    No sense in getting treatment A when your tumor’s characteristics indicate that treatment B might be a better choice. (Notice the ‘might’, as this is still a guessing game for most ‘players’. ) Nevertheless, the language of the consent revealed that the patient has no right to expect the data from any such testing, although the study doctor might have access.

    I objected to the consent for that plus other reasons, but have come to understand that this format is mandatory, with very little variation permitted within the document. Those changes reference the particulars of the trial, obviously. Important to note that the consent does not GIVE the right to the patient for this data but does not FORBID it. Thus, there is an opening to pursue this within the specifics of the trial…which I am doing.

    The biggest issue might well be as to the cost of the testing, but that is not the barrier it once was. Any advice to that issue would be appreciated.

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