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If I stay really still maybe I will keep feeling good…

I keep knocking on wood because the other shoe has not dropped and I am continually feeling better. I want to believe that this is not fleeting, I have had periods during this cancer situation where I did feel better but this seems different and I question myself about it constantly “DOES this feel different?” I believe it does… “Is this wishful thinking?” I certainly hope it isn’t… The mind fuckery that happens makes me feel unsettled and a little anxious, I have been fooled before. It is definitely an exercise in appreciating how I feel in the moment, which I find myself interrupting with “buts,” as in “But what if this all goes away tomorrow?” Or “But what if the scan shows that I have even more cancer?” I shared the video I made of myself singing karaoke with my clinical trial nurse and here is the card I received:


Melissa’s handwritten message made me cry and I felt the pressure to continue to feel better, I know that sounds weird but I really don’t want to let anyone down, even if by doing so the real loser is me. Yoda would say “Oh yes, the codependency is strong in this one, mmmmmm hmmmm…”


I have been practicing on my bass guitar almost every day for a couple of weeks so far. This is a good way to stay present, the moment I start thinking, my fingers stutter on the strings making awful thudding sounds, a good reminder to mute the mind noise. I really hope I get good at this instrument, it would be so cool to be able to actually jam with other people, I have always wanted to be in a band, stage 4 cancer and middle age be damned, I still have dreams!

I am to this day, seeping primordial ooze intermittently, this could be the reason I make up imaginary quotes by Yoda, Dagoba is literally leaking out of me “Better out than in, hmmmmmm?” Even though I feel a Luke Skywalker type whine pushing against my lips I answer “Yes Master Yoda.” The force is definitely in me AND out of me.


Until next time ❤️



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drgenlong
drgenlong
Feb 22, 2022

As a person who has spent some time working with clinical trial staff, I can tell you that they certainly *hope* you continue to feel better, but mostly they are just incredibly grateful for everyone who has chosen to be in the trial. Do NOT put extra obligations on yourself :-) (Codependency I have, as well.)


You are doing something few people are ever willing to do-- take part in a trial. Seriously, it's like 5 percent of people. Very small. AND you are providing priceless information at every single visit and check-in. That you provide them with karaoke is icing on their (dull, data-gathering, basement-cubicle-sitting) cake! You actually gave health care workers a boost and that is no small…

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Kara Muir
Kara Muir
Feb 22, 2022
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I had no idea that the percentage was so small 😳 I begged my doctor to find a trial for me as the treatments thus far had been so problematic. FDA approval does not mean one is safe from harm when it comes to cancer treatment, I didn’t really think a trial would be different in that regard. I feel so honored and blessed (gag me, “blessed” is grossly overused these days but it fits here) to be a part of this groundbreaking study and am so grateful I feel as good as I do right now. If I can help others feel better that is the icing on my own cake for sure.

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