Reality Cuts Like a Knife: Wanna know the hardest part about life? Reality. Wanna know what makes it easier? Acceptance. Spoke with my surgeon and Im heading back soon to Oklahoma for follow up, CT scan, testing, and to discuss the best way to manage me. I declined the PET. Cancer is expensive and imaging serves my case no purpose, especially considering my last PET was technically, NED (No Evidence of Disease), and my tumor markers were undetectable. I requested an ultrasound and biopsy in that appointment last June. Showed him (my surgeon) the node. That biopsy was malignant. Not to mention, my Whole Body Scans have been NED for over a decade (for annual follow ups) with active disease because I do not absorb iodine and resistant to the standard protocol treatment for the Good cancer that has one of the highest survival rates of all types. Not in my case. Ive had 4 recurrences and still dealing with this. It just gets old. Seriously. Enough. But giving up is never an option so I keep on keepin on. No other way to be. People get to take vacations. Im a traveling cancer patient who used all her paid time off already and flexing my current schedule in order to meet with my surgeon and oncologist. Im not angry. Just keeping it real. People should know how lucky they are. And most dont know what they took for granted until theyre dancing through their own rain in the shitstorms life hands us. Acceptance is the answer to all of my problems and I learned that when I began developing a spiritual foundation years ago. And it helps me daily. So does trusting the universe. What will be will be. Cancer doesnt scare me. Life scares me more. This has become so normal for me that I am excited to go back to Tulsa to see the people who have saved me. I miss them. A lot. Im a realist, not being negative, and entitled to want to punch reality and cancer in the face on occasion. Im in excellent hands. Literally. But for this patient, the hardest part about being me is making the decisions without the help of imaging and standard protocols, with the guidance of my amazing team. I do not know whats best. And it leaves a foul taste in a mouth that hasnt fully regained tastebuds. Pun intended. The silver lining is Im breathing and able to write this. And, Ive finally met my out of network deductible, despite an astronomical debt from 3 surgeries, 27 rounds of external beam radiation, and numerous scans, procedures, biopsies, etc. We will focus on my neck for now and I will decide whats best. My intuition has always been my guiding light. What may be difficult to accept is the grey area of determining if radiation was effective based on CT. Thus, the inability to determine remission. Its a tough pill to swallow. But its life. And Im living it speaking my truth and sharing my journey so others know the most important lesson: A patient knows their body best. Advocate. Educate yourself. And trust what you feel. Sincerely, Rolling with the Punches 👊❤️
Posted on: Wed, 03 Dec 2014 23:43:17 +0000
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