New Year, New Brain?

astrocytoma2020 – what a crazy year! I’ve been lucky enough to avoid COVID-19, but my brain function is still a rollercoaster ride.

I’m nearing the nine-year anniversary for my brain tumor diagnosis. I passed the calculated expiration date on Super Bowl Sunday in 2018 when the Eagles were playing Patriots. I was told I had 5-7 years to live after my diagnosis in 2012, but they also suggested that my 6cm astrocytoma started developing in my teenage years. Math is great, but even quantitative analysis is guess work in my opinion.

The past nine years have introduced me to migraines and seizures. I’m allergic to all of the current seizure medicines except two of them: Vimpat and Keppra. I’m still having seizures, so it’s time to throw a Hail Mary.

Back in October 2020, I was having a proper Sunday football binge with my friends. Between the afternoon and evening games, we decided it was time to grab some chicken wings. I went into the restaurant pay for the food. I had a grand mal seizure, passed out, and barfed all over myself. Mad props to the restaurant staff for knowing how to deal with a person in a seizure. When I came to, they had me sitting upright in a chair, and they had called 911. I wasn’t fluent yet, but I pointed at my phone and said my friend’s name. My friend called my partner so that he could meet me at the ER.

The grand mal seizure was the last sign that I needed to have a Vagus Nerve Stimulator (VNS) installed to help regulate my brain activity. In summary, it’s like a pacemaker for your brain. After all of the MRI’s and eight years of chemo to regulate my brain tumor, what’s one more brain surgery?

I haven’t been sharing my cancer story because too many things have been up in the air. That being said, my brain with undergo the knife again February 8th. It will be outpatient. I’ll recover at home, and my partner and dog will have the luxury of heeding my bossy requests. It’s not COVID-19, so I’m feeling grateful.

I’ll keep people updated about Medusa (my brain tumor)’s reaction to 24/7 monitoring. I literally can’t wait to go through TSA again and mystify the security guards. Until then, get your COVID vaccine and enjoy the little things in life.

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Dear Senator McCain

Senator John McCain returned to the Senate floor today, after spending just five days in recovery from surgery to remove a brain tumor. Senator McCain’s office released a confirmation of his diagnosis on July 19th. He has a glioblastoma, one of the most difficult types of brain tumors. I applaud McCain’s tenacity, but I am very disappointed by his stance on the Affordable Care Act. This is my response.

Dear Senator McCain,

Congratulations on heading back to the Senate floor. I admire your tenacity.

I am reaching out to you as a fellow brain cancer warrior. I was diagnosed with stage 3 Astrocytoma five years ago. I was self-employed, and my partner was in graduate school when I received my diagnosis. We did not have health insurance. However, the Affordable Care Act (ACA) went into effect in the Spring of 2012, and I was fortunate enough to get insurance coverage through the Pre-existing Condition Insurance Plan (PCIP). I paid for my policy, deductibles, and co-pays, just as anyone else does. My partner dropped out of grad school so he could find a stable job that provided health insurance. Thanks to the PCIP requirements, I was able to obtain stable health insurance when the PCIP expired.

I have been on chemo for five years. I have had three separate different sets of radiation. I have had bi-monthly MRI’s for the past five years. I have utilized speech therapy and physical therapy. If the ACA is repealed, I (as well as every other cancer patient in the United States) could be at risk losing health care insurance. That is unconscionable.

Please vote no for the repeal of the ACA. Healthcare is a basic human right. You owe it to yourself, your constituents, and all your fellow cancer warriors to stand up and speak out.

I look forward to your support and send you positive, healing energy.

Sincerely,
Serena Freewomyn

Dealing with cancer is hard work. I am blessed to have the support of my family and friends. However, I have wracked up over $300,000 of debt ($60,000 was from one visit to the ER) because of cancer. Please contact your Congressional representatives and urge them to keep healthcare coverage available for everyone, not just the one percent. We can’t say that the US is the greatest country in the world if we don’t have equitable access to healthcare.

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The Benefits of Speech Therapy

I was diagnosed with a Stage 3 astrocytoma brain tumor three years ago. While many brain tumors can be surgically removed, my tumor is located in the cerebral cortext, which controls speech and reading comprehension, as well as short-term memory. My brain surgeon removed as little brain material as possible to confirm the diagnosis so that my brain would be the least compromised.

One thing that helped me recover from the effects of radiation is speech therapy. Speech therapy is about more than retrieving words. It includes strategies to retain information (secondary memory) and finding ways to communicate when you can’t remember words that make you stumble.  My speech therapist has challenged me to do at least one hour of mental exercises a day. I’m a nerd, so this is a great excuse to do crossword puzzles, wordsearches, and memory exercises. I’m such a word puzzle junky that I’ve decided to start writing my own puzzles and sharing them with others. I’ll be sharing puzzles on my blog. I you have as much fun as I do getting a neuro workout!

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