New Year, New Brain?

January 28, 2021 By 2 Comments

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 McSally: Healthcare is a Human Right

August 21, 2020 By Leave a Comment

The Democratic National Convention has been interesting, to say the least. I have enjoyed watching the wonders of technology to accommodate social distancing. My favorite part of the convention, though, was the speeches from Michelle Obama and Kamala Harris. Strong women with strong voices.

In contrast, I have been very disappointed Senator Martha McSally, one of Arizona’s strong female voices in Congresses. Today I sent her a letter to let her know why I am disappointed in her. This is what I wrote.

Dear Senator McSally,

My name is Serena Freewomyn. I live in Tucson, and I have lived in Arizona for almost all of my life. My stepfather was a jet mechanic for the Airforce. My grandfather was a company clerk for the Army, and his brother served in the Marines. My great-grandfather was an engineer for the Navy. My husband’s grandfather was also an engineer for the Navy, and his brother-in-law served two tours in Iraq for the Army. Needless to say, I have pride for everyone who serves the United States, including you.

I feel proud of your fight to have women’s service in the US military held to the same recognition as men’s service. You took leadership to have bipartisan support for the Women’s Memorial. You demanded that women should be buried in Arlington Cemetery. You even took Donald Rumsfeld to the Supreme Court of the United States to allow women to fly into combat. You have shown bravery in the face of sexism. And I admire you.

I do not admire, however, you standing beside Donald Trump and allowing him and his cronies in Congress to restrict access to universal healthcare. Even before the COVID epidemic, you supported rescinding the Affordable Care Act (aka “Obamacare.”) I am a thirty-nine year old woman who has spent the last decade scheduling her life around chemotherapy, radiation, speech therapy, physical therapy, and naturopathy treatments.

I was diagnosed with a stage-3 brain tumor in February of 2012, just as Obamacare went into effect. I am very Blessed that an anonymous federal employee waited with me while she passed my application up the food chain. I was approved for the Pre-existing Condition Insurance Plan the day before I went in for my next MRI. I was (and still am) able to get chemotherapy and radiation.

The Affordable Care Act was up for repeal in the summer of 2017. Senator John McCain had just announced that he had been diagnosed with the same type of tumor I had. I wrote to him asking him to vote in favor of the ACA. I explained my story to him and told him that I admired his service to this country, both as a senator, and as a service member who was a POW during the Vietnam War. I told him that he had the privilege of getting medical treatment, both as a member of Congress, as well as having VA hospital access. I don’t know if my letter had any influence on his decision, but he did vote to keep the ACA in place.

I am alive today because of Obamacare. I am alive today because of Senator McCain’s vote.

This is an election season, and so political ads are expected. Captain Mark McSally’s campaign has a positive tone. Your political ads have been virulent. Both or you served in the military. Both of you have accomplished amazing things for our national. However, I cannot support a candidate who doesn’t respect the basic human right of access to healthcare. Please remember that you were NOT elected to the senate. You inherited that position. If you expect to win the 2020 election, you need to appeal to all of the constituents in Arizona, not just the Trump supporters.
Thank you again for your service. Women value strong female voices in leadership positions. I hope you will take this into consideration.

All of the DNC speakers this week highlighted multiple issues in their speeches. Healthcare is my number one issue. If a candidate doesn’t support it, I can’t support them. Period. I hope equal access matters to you, too.

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Puzzling Words

April 30, 2020 By Leave a Comment

The COVID crisis has unintentionally sparked a trend for people to exercise at home, rather than at a gym. My dog has started to expect three trips to the park, even though he has easy access to our yard. My partner is obsessed with the number of steps he takes each day. Me – I’m focused on keeping my brain active.

Crossword puzzles are one of my favorite types of exercise. I do 2-3 crossword puzzles each day. I write down words I don’t know and look them up in the dictionary. Why? Because crossword authors regularly use the same clues in different puzzles. I like expanding my vocabulary. I also like training my memory so that I can recognize the words when I see them.

I use a similar strategy for word search puzzles. I try to focus on two or three letters of the word while examine the puzzle. What letters are the least common? Are there double letters in the word? It’s easier for me to find small parts, rather than the full word. If I get frustrated, I move onto another word so that I don’t get caught up focusing on something that blocks my focus. I can always come back to that word when I’m finished with the other words on the list.

Fill-In puzzles are fun, too. They’re a mix of crossword clues and word search in the sense that you have all of the words; you just have to use some logic to discover where they fit in the grid. I start by filling in one section at a time, focusing on the longest words first. I look at connecting words to see if they match up with each other. Just like crosswords and word search puzzles, I can see words that are often on the list. It’s a good memory exercise.
My speech therapist taught me that it’s okay to look in the back of the puzzle book to verify my answers. It’s not “cheating.” It’s a way to get started on the puzzle without getting frustrated.

I hope you develop the same sense of entertainment for word puzzles that I have. I can carry a puzzle book in my purse so that I can do mental exercises while I’m waiting for the bus, or sitting in a lobby waiting for an appointment. Word puzzles are also a great way to enjoy a good cup of coffee and a scone. Your brain needs just as much exercise as the rest of your body. Have fun, and keep your brain working!

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Is Your Brain Puzzled?

April 14, 2020 By Leave a Comment

It is important to keep your brain active while you are going through chemotherapy. We all get “chemo brain,” and it’s especially true if you tumor has set up camp in your neuro region. My speech therapist encouraged me to do word puzzles (crosswords, fill-in, wordsearch . . .) in multiple platforms. One benefit of doing a crossword on paper is that you are exercising multiple parts of your brain. The cerebral cortex manages speech and reading comprehension. Another part of your brain controls the mobility of your hand while you write.

I love old-school puzzles in the newspaper or a book, but phone and tablet apps help my help me utilize another part of the brain. Isn’t it ironic? (cue Alanis Morissette). Here are a apps you can download for free on your smartphone or tablet.

  • Wordsearch: The app is pretty straight forward. You get a list of words that grouped by categories. The puzzle get more challenging the more you play the game.
  • Word Swipe:

    • The puzzles in Word Swipe are also categorized by theme, such as world landmarks, 1960’s pop culture, and famous authors. Every day there is a famous quote to decipher, and it’s a great way to learn about history/geology.

  • Memorama: This is a basic memory game. You turn cards over to find a match. It’s as easy as that.
  • Onet Connect and Onnect: Both of these game require you to find matching pictures. They’re different that Memorama because the pictures are face-up and you have to able to connect the pictures with just three lines. Onet Connect shows the same pictures each level, but the tiles start to move around. Onnect is similar, but the pictures change every level. You can replay the same level to increase the speed of your matching. I like to play the levels at least three or four times before I move onto the next level.

Video games can also exercise your mind.

  • I love Big Brain Academy for Wii. It has several memory games, as well multiple visual recognition puzzles. The utilize five types of learning: math, memory, matching, visual. You can play the game alone to build up strength. You can also play with multiple players to encourage a sense of competition.
  • Tetris a great throwback to the 1980’s is also available on Wii and the Amazon Firestick. This game utilizes space recognition and logic. You have to think about how different moves will set you up for future moves. It’s fun to play solo, or with a partner.
  • There are games to download to your phone or tablet that are similar to Tetris. 1010!, Flow Free, and Unblock Me both focus on block placement.

    • I change back and forth between games so that I don’t get bored. Think about going to the gym, or preparing for a marathon. Different types of physical exercise focus on specific parts of your body. Wee should take care of our brain as much as we tend to the rest of the body.

    I hope these tips can help you maintain your brain, your body, and emotional strength healthy are you travel through your cancer treatment. And if you don’t have cancer, we all need to keep our brains in check. So keep a puzzle on hand – even if it’s an old school paperback puzzle. There’s still value in the classic forms of reading.

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Enough is Enough

July 12, 2018 By Leave a Comment

I have had the privilege of sharing my stories with Female Storytellers!, a local organization that provides monthly writing prompts and gives women (however they define that identity category) to share their stories with a live audience. This month’s prompt was “Enough.” I was drawn to this prompt because I have had enough time on chemotherapy to speak from the heart about the impact is has made on my life.

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Chemo Can Kick You Into Early Menopause

March 13, 2018 By Leave a Comment

One of the predictable side effects of chemotherapy and radiation is a disruption of hormone production. Menopause typically occurs between the ages of 45-56, but menopause can occur earlier if you are receiving chemotherapy; if you’re using hormone replacement therapy (either because of chemotherapy, or because you’re transgender); or if you’ve had a hysterectomy.

Symptoms of menopause include:

  • Hot flashes
  • Insomnia
  • Anxiety and/or depression
  • Headaches
  • Vaginal dryness
  • Urinary problems

I have experienced all of the conditions of menopause thanks to being on chemotherapy for over eight years. I don’t miss tampons, but I do miss feeling chilly.

I started dealing with early menopause a few weeks after I started receiving Avastin, an IV chemotherapy treatment. The downside, however, was that I started having hot flashes and headaches. Even small changes in room temperature or ligthing can trigger a migraine. Although I’m usually cold (even in the Arizona desert), I have to dress in layers so that I can strip/redress depending on my perceived body temperature.

There are several things you can do to address the side effects of menopause. Acupuncture is one of those tools. I enjoy getting acupuncture because it works. And at the very least, I get a good nap when I go in for treatment. Acupuncture has helped reduce the frequency and intensity of my migraines and hot flashes. It has also helped me manage my depression.

Don’t let menopause get you down. Take care of yourself, and focus on healing.

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Clean Slate

December 31, 2017 By Leave a Comment

The year is coming to an end, and what a year it’s been . . . for all of us. Trump has dominated the headlines, but I don’t want to talk about him. I want to talk about me. It’s my blog, after all.

I have had a good balance between positive and negative experiences in 2017. I went to Rochester, NY in January to attend the March for Women’s Lives with my brother and his daughters. I was so excited to see people coming together to celebrate the importance of women’s history and women’s leadership. The icing on the cake was watching my nieces making their own posters. They were eager to be a part of social justice activism. My heart melted when my oldest niece told me she was a feminist without any prompting from me.

My tumor is stable. I’m cutting my chemo treatments back to once a month. MRI’s will be quarterly, rather than every other month. I’ve graduated from speech therapy and have been enjoying the challenge of intense physical therapy to help me maintain my balance. My quilting skills have grown, thanks to volunteering with Project Linus Tucson. I get to drive once a week to run errands. These may sound like small victories, but it’s the little things that help us create and share positive energy. Just think of the atom. It’s miniscule, but it’s the basis of all life. [Read more…]

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The Five Year Mark

November 8, 2017 By 2 Comments

I was officially diagnosed with Stage 3 brain cancer in 2012. I was told that I had a 5-7 year prognosis. I hit the five year mark in September. I believe that I will pass whenever I am ready to pass. For now, I have work to do. Every day is a gift, no matter who you are. I intend to spend each day as if it were my last.

The past year has been interesting, to say the very least. I’m only 37, but I have been thinking about what I want my funeral/s to be link. I want to be prepared to pass while I’m still able to make informed decisions about my health care, as well as what I want for end of life care. I guess I’m truly an adult now.

I want all of my nieces and nephews to know that I love them. I want my birth and chosen family members to know that I love them. And I want other cancer survivors to know that there are ways to keep your head up and stay positive.

Christmas music is one thing that makes me happy. When I had radiation in 2012, I listened to the same Christmas album every day that I went into the radiation tube. I took my stuffed monkey with me into the tube and I listened to the guitar playing old carols in a Baroque strumming style. I meditated with my eyes closed as I listened to the sound of the laser beams igniting, and I allowed the different colors of light embrace me. I feel the same way about MRI’s at this point. Music helps me stay centered, whether I’m at home or in a tube.

To all the folks out there who are working their way through some crazy health adventure, Goddess Bless. I haven’t given up, and you shouldn’t, either.

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Dear Senator McCain

July 25, 2017 By Leave a Comment

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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Third Time’s a Charm

July 28, 2016 By Leave a Comment

The past month has been a series of ups and downs for me, primarily because of my recent MRI results. A gurl gets giddy when she thinks she’s done workin’ the pole. Sadly, that’s not the case for this cancer survivor. After a month of research, pondering, and prayer, I’ve decided to do another round of radiation, rest, recoup, and start doing chemotherapy again in September.

This wasn’t an easy decision. After four years of treatment with the same physician, I went to another cancer treatment center to get a second opinion. I got the same information that my current oncologist gave me. It felt good to have her opinion reaffirmed, but to be honest, I felt like I was cheating on my doctor. Does that make sense?

Today I am going to the radiologist to get fitted for my mask. I’ll be starting my third course of radiation in two weeks. I don’t mind radiation. In fact, I find it fascinating. I love the crew, I get to bring in mixtapes for them to play while laser beams vanquish tumor cells, and I’ll ham it up with silly hats. I’m a nerd. What can I say?

I’ve spent the last month hiding under a blanket and snuggling up with my dog and cat. My partner has been an awesome support beam, and my friends and family have helped me feel loved. It’s time to put on my Polka Face and make the most of every day.

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