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Small victories


Getting coffee after doctor appointment and they spelled my name wrong, ha!

Today I had my second appointment with the research nurse who is in charge of the clinical trial that I am participating in. After having my blood drawn I was escorted to see my oncologist first and Charles came along as well and the news so far was good. There is something they test in the labs drawn which is called a CEA and known as a tumor marker, a tool the doctors use to measure whether the tumors are potentially growing or shrinking, though it isn’t a definitive test, it’s kind of like a western medicine version of a dousing rod or a tarot deck. People can have an elevated CEA and not have cancer but if you do have cancer, the information can be a useful tool that indicates change. My CEA that had been gradually increasing with the immunotherapy dropped 50% between my previous two exams, not counting today which I don’t have the results from yet, this is a positive thing though and a small win that makes my heart sing a little. My doctor is very encouraged as I am…Ultimately I don’t know how this is going to play out but my imagination is shooting for the moon and why not? Celebrate the victories no matter how small.


Besides the positive test results, lack of my previously chronic fever, elevated energy and diminished brain fog I am now oozing necrotic tumor out of all of my under carriage holes…Sorry to be gross but this is life and I am not here to paint it pretty, I want to share my experiences in the way they are occurring. This is not a bad thing, just kind of scary. If you can handle it, stick with me for I have no choice in the matter and this is my reality. You may wonder what this ooze is like, I mean I would want to know, so here it is, I admit this is vulnerable for me as you might imagine and I can only speak of my own point of view, anyway…Basically it starts with chunks of tissue, magically appearing out of my mostly unused back butt (unlike my front butt “Klaus”), usually light pink in color, this is more surprising than alarming. What comes next in this body opera are varying colors of slime until the mother lode of necrosis appears, a fucked up rainbow that ends in a crescendo of blackish brown ooze, the consistency of frosting that has not completely absorbed the sugar as granules are present, sometimes speckled in small white chunks. Varying degrees of this have occurred before in the different therapies I have endured but this has been the most intense…I keep saying to myself “better out than in” like a mantra when the scary thoughts tap my shoulder late at night. It eventually ebbs, maybe after 12 hours of draining out of me, sometimes giving me a reprieve where I wonder “Is that it? Am I done?” So far I am not finished with this section in this chapter of my disease, it presents itself like a river with rapids, the calm parts I get to stop holding my breath for a minute knowing there is a category 5 just ahead. I look forward to a time when the ooze stops but until then I keep hanging on and noting the positive progress repeating my mantra as I aim for a future that does not include cancer in my body. A girl can and will dream.


Until next time ❤️


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