From September 26, 2018

What now?!?

Journal entry by Abigail Johnston — 

I started seeing a new neurologist and he’s working to get to the bottom of my recurring and debilitating migraines. He’s a specialist and I appreciate his thoroughness and attention to details. He reviewed all of my medical records with me and asked me questions no other doctor did. I’m hopeful for good results. The medication he gave me to use during and to prevent my migraines seems to be helping.

One of the tests he ordered was a thyroid ultrasound as he thinks that my ongoing hormonal fluctuations might be related to a thyroid or perhaps a pituitary issue. The ultrasound showed a growth on my thyroid. Not sure what it is yet, but there’s another thing to obsess over.

After getting another X-ray of my pelvis and seeing the orthopedic oncologist, it appears that the heterotopic ossifications in my thighs may have stopped growing. That’s at least what the X-ray showed. Unfortunately the same areas are lighting up even more on the PET scan. This leads my doctor to speculate that there are tumor cells growing/organizing in that area. Tumors/lesions in a muscle are substantially less dangerous than in bones or organs but it’s still so worrisome that there are any at all. Not sure yet but it’s something to watch.

Each time I think that things have settled down or I can find comfort in the new medical issues, there’s something new.

The month of October/Pinktober/Stinktober is coming. This will be the second season of peptobismal pink advertising and misleading the public I’ve had to endure since I was diagnosed. It is easiest to focus on education and making sure to ask everyone to make good choices about where funds go. I can’t ignore the bone deep anger I feel at those companies making money off of “awareness” and “prevention.” I’m enraged even more this year than I was last year. So much money that could go to life saving research goes to line the pockets of the wealthy. The lies perpetuated by so many is so very sickening.

Elliot and I will head to DC for the stampede and Die in. I am hopeful it will feel productive and give me a focus to build on. I’m such a do-er. I need focus and a goal bigger than myself to feel productive.

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