While at the NIH (National Institute of Health) this week I had a Dotatate scan which confirmed that my tumor is a Para-gan-gli-oma. This is good news because it means I am still ‘medically interesting’ to the NIH. I also had an MRI with contrast, various blood tests, and CT scans with contrast of my neck, chest, abdomen, and pelvis. As I mentioned earlier this week we knew that nothing earth shattering was going to happen but it was an important step nonetheless. We fly home today and will have a telemedicine call next week when all the scan results are back. Hopefully we will be able to make a decision on what we are actually going to do. Getting these scans was kinda the final step in our decision making process. While my choices are never too far from my thoughts I’m still very torn between surgery, radiation, or continued monitoring. Thank you to everyone for your messages this week, I really appreciated them.
While nothing earth shattering is going to happen this week it’s a big step for us. Today we are flying to Washington DC to go to the National Institute of Health. They specialize in the type of tumor they think I have which is called a Para-gan-gli-oma. They will do a scan on Wednesday to confirm this and then a bunch more scans on Thursday. It’s now been two months since I had a stroke, and one month since my heart procedure. Time crawls when you’re not having fun!! I’m very optimistic about this week, and I’m hopeful that we will have a clear road map by the weekend. I know I will be in lots of peoples thoughts and I appreciate it endlessly Do your best to not take your health for granted, even for today.
My mind is clear
My body is strong
My spirit is sharp
This is the mantra I have been repeating to myself over and over, and over again. As I take deep inhales I visualize my breath crashing into my tumor like waves into boulders, and with each exhale I imagine it being choked off little by little. Look at me and you have no clue what’s going on in my mind and body. I am at war with myself.
Physically I feel amazing but I’m not allowed to do anything. I can’t jump, hike, workout, or do any of the things I usually do to release my energy. I am a caged animal.
It’s easy to fight someone who’s standing in front of you. It’s even easy to fight with someone on the other side of the world. But what am I supposed to do against the faceless, invisible enemy who’s living inside me?I can’t physically beat him. I can’t outwit him with my words. I need a different form of strength and intelligence that I must cultivate from within. This is truly a game of patience, and fortitude. I didn’t choose to learn this lesson, it chose me. I am growing in ways I didn’t know existed, I will beat him, and I will continue to grow.
One more week till I go to DC to get more scans and hopefully some answers