Sorry about the language but my blog my inappropriate verbiage…It is just how I feel and I apologize if you are offended.
Thankfully Charles was able to come to my appointment with me, these progress ones are always daunting. My doctor came in to the room, “How are you feeling? Any pain anywhere?” I quipped back “Should I have pain?!” She then told me that my liver tumor had grown more, not as big as when I was initially diagnosed but there was what she called “progression” and she had to ask all of those questions. I was deflated, though not surprised, to be honest the immunotherapy has felt mysterious and hard to read for me. This cancer experience has already made me deeply question my intuition regarding my own body. She had in her hands two stacks of stapled papers, one detailing a trial that I have a specific gene mutation for and the other a backup plan. The trial has minimal side effects and toxicity and out of 18 people only 3 had cancer progression, which is fairly good odds. They have a space saved for me and I will find out next week if I will be allowed into the trial, fingers crossed. I did breakdown a little in her office, the look of concern on her face really made me feel disappointed in myself, which I told her. She touched me with genuine feeling in her eyes and said “You are a miracle. You have had so many surgeries and have never given up. If anything, we haven’t done enough for you. I am proud of you.” The words are not totally verbatim but the gist is the same. It’s weird that I feel this way, like I am failing everyone else, that no matter what, I can never do anything right…It plugs right into that shame spiral, I am sure I am not the only one who experiences this. My doctor assured me that they are constantly looking out for the next best thing, she really emphasized this. The only thing that will keep me out of the trial is red tape but I am hoping this doesn’t happen.
I got another prescription for oral yeast medication so here’s hoping to finally getting a handle on it. I asked Charles if I could get Ethiopian food and he told me I could have anything I wanted, a perk from getting somewhat problematic news but I did take advantage of this.
I am full and a bit weary but I am not done by any means, just regrouping and preparing internally for the next step. Wish me luck.
Until next time ❤️
So, do you prefer Ethiopian food over Indian/Pakistani food? I gave Ethiopian 3 tries here in Toronto, where apparently we have "great" Ethiopian restaurants, and they struck out every time. That was eating IN the restaurant, too, so the odds were totally on their side! I've had people tell me that seeing as I'm such a huge fan of Indian/Pakistani food, I should most likely find something to love about Ethiopian food, as well. But, well... so far, I haven't. Cold meat on a giant wet sponge and no fork is more than a challenge to me... it's a punishment! :-)
Also, which do you prefer... Haagen Dazs or Ben & Jerry?
Don't feel you are failing. You are creating, producing, and inspiring so many of us while playing the hand you have been dealt. You are doing art here - the art of living. Taking part in a clinical trial is a gift you give to the world, so kudos for being willing to enter one when so many folks are not! The next time you hear that "you're not good enough" voice, tell it to begone. That's a lie and you don't need to listen. We love you Kara! (And Charles!)
Ok, maybe not the best news. But our hope remains undaunted. We continue to join our hearts with you and Charles ❤️❤️❤️