One of my biggest fears has always been the possibility of losing the power to express myself with words. As a writer and editor (on long term hiatus at the moment), I’ve relied on my communication skills to support myself for two-thirds of my life. When I was diagnosed with brain metastases in 2016, that fear hit home hard. And when my first brain seizure struck last month, I quickly realized that getting this neurosurgery done successfully was important not just to my health, but to my sanity and quality of life.
Head Wound Harry
Right now I am five days post-op from laser ablation of an area in the left occipital lobe (also known as the visual processing center of the brain). So far, the worst of the side effects from the surgery are some occasional short-term memory loss, slight vision and balance changes, headaches, and an overall mental slow down. Not that I was Einstein previously, but it probably shouldn’t be taking me 20 minutes to compose a five-line text on my phone. I’m hoping to have this blog post finished by next month. Kidding…maybe.
I am currently taking steroids and Lasix to reduce the swelling in my brain, along with my anti-seizure medication and a variety of other meds to manage other symptoms. The steroids are rough on sleep but a necessary evil. By the time I have my follow up appointments to get my incision staples removed and check my progress in about two weeks, the swelling should be gone and we should have a better grasp on whether or not I have any lingering cognitive issues. I can feel my mind clearing a bit more each day since the surgery, so I’m taking that as a sign that things are going to keep improving.
The initial pathology on the biopsy Dr. Chiang took in the operating room during the ablation procedure only showed radiation necrosis (or tissue death due to the previous radiation/gamma knife treatment). That means they don’t think there is any active tumor regrowth in the treated area, just radiation damage. I didn’t mean to bury the lede, as that’s certainly terrific news. But I haven’t yet received the final pathology results on the entire biopsy area; we’ll have a more definitive answer on that when I go in for my follow up. I also have another brain MRI scheduled for April 5th. We’ll certainly update everyone once we get all the information in hand.
I’ll share some thoughts on my overall hospital experience in a future post, but let’s just say while the vast majority of the healthcare providers I dealt with during our visit were wonderful (especially my fabulous neurosurgeon Dr. Chiang), they couldn’t help overcome some of the facility constrains that affected my stay. That included an 8 hour layover in two different recovery areas due to a bed shortage in the neurology ICU, discharge confusion, and hospital room noise levels that went to 11…and then some. More on all that to follow when the fog clears and the words start flooding back. I haven’t found my groove yet, but I will.
I have been thinking about you and am so relieved and happy that the news so far is good!! And who the F are you kidding? You could’ve given Einstein a run for his money!! They just drilled a hole in your brain, give it a little time….if you’re already this articulate, I know it will all be there again. And oh yeah, screw the sterroids! I hope that is very short term. Thinking about you, sending happy thoughts, positive vibes, good juju, and lots of love! xo
LikeLiked by 1 person
I know you know how bad the steroids suck. 🙂 First I want to eat ALL the edible things, and then I wake up in the middle of the night thinking about all the edible and non-edible things, too.
LikeLike
Dearest Paula,
Your words and musings are crystal clear! Love seeing your smile. Praying the news continues to be good.
Hugs!!!
xo
Susan
LikeLiked by 1 person
Hey, some people never find their groove. I am impressed, and wish you the most gentle recovery.
LikeLiked by 1 person
Wishing you peaceful sleep; no aches or pains and happy clear thoughts and lots of good food!!! love you lots and lots……
LikeLiked by 1 person
I’m with Phyllis! You could have given Einstein a run for his money and your prose is perfect. The fact that you went home the day following brain surgery still amazes me. Knowing your mama bear instincts I think you just willed yourself well enough to be home for Cas’ birthday. Love you lots and take it easy on yourself. 💜
LikeLiked by 1 person
Paula, I’m thinking of you and Tim. You are an incredible lady, and you are a great mom. As hard as it is, try to be patient (I am not at all patient). It sounds like your surgeon is wonderful, and she will give you great medical guidance. One day at a time.
LikeLiked by 1 person
So happy to hear from you, my friend! I hope recovery continues to go well. Happy to hear this round of good news and can’t wait to hear more after the 5th. Love you! Xoxo
LikeLiked by 1 person
Couldn’t be happier to hear that you are improving day,by day. You, Tim, and the boys are always in my thoughts. Keep getting better—I am looking forward to you coming for Katie’s wedding. I need to hug you. Love you
LikeLiked by 1 person
We’ve been wondering and praying that you had some good results from this latest drilling. Glad to hear that nothing new was found. Oil would be nice but a dry well is better. Get some rest!
LikeLiked by 1 person
I think playing scrabble is a huge part of your rehab. I love you! You are freaking amazing and strong and articulate and I would have no idea someone was messing around inside your beautiful head !!!
LikeLiked by 1 person
Ambrosial memories alight within the tempest of my wretched thoughts.
Paula is telling me to cool-it.
My gentlemanly character avails to the mass dejection of a cold world while I wear a smile.
Alas, my picture metamorphs into a euphoric anthem.
All of the good little things beaming down in golden rays like roadways to heaven.
A song about us.
Those times of listening to my gargantuan tune-blaster & fishing at the slough.
Watching “My Beautiful Laundrette” with Liz.
Making sure that everybody pays cover for the half-barrel in your garage.
Those are the precious gems amassing together as one beautiful symphony.
An opera of a wonderful life.
Excitement and anticipation is strangling my essence upon awaiting for your arrival in June.
I’m ready to rock like Johnny Lightning! …
LikeLiked by 1 person
Memoriessssssssss. Can’t wait to see you in June either, my friend!
LikeLike
I stand in awe of your courage and determination.
You continue to be in my thoughts and prayers.
Lots of hugs & love,
Cori
LikeLiked by 1 person
Praise God! So glad to hear you are recovering! Continuing to pray for excellent results! I have to agree with the others… You sound so good to me. Lots of love!💞
LikeLiked by 1 person
This all sounds really positive! I’m glad you’re already writing so soon after surgery, and you’ve been feeling better each day. Boo to med side effects though!
Sending love ❤
LikeLiked by 1 person
Iove you, your words, your zeal, your strength, you in every way!!!!!! XO
LikeLiked by 1 person
Paula, only you could look gorgeous in a hospital gown and head wrap. You look and sound wonderful and I’m so glad the preliminary reports are good. Let the medicine do it’s stuff, even if it’s no fun. It’ll get you where you need to be. Miss you and sending lots of love and hugs your way!
LikeLiked by 1 person
If only my musings were half as thoughtful and clear even half of the time. You are an inspiration, PFM. Please keep the words flowing!
LikeLiked by 1 person
I am utterly amazed that you are updating us so soon! That’s a good sign. A great sign! Now I’m hoping for lots of quiet and lots of blankets because I know sleep – even in a bed – is a tall order. Thinking about you every. single. day.
LikeLiked by 1 person
If there is a God, then it must be true that he (or she?) gives the toughest battles to the toughest soldiers. You’re dignity and strength through all phases of battle continues to amaze me. I remain in awe and in quiet support of your undeniable resolve, grace and humor. We’re SO here for you. Can you feel us all at your back? You’re my hero. Keep smiling, writing and loving.
LikeLiked by 1 person
Love the 🎩! You are amazing, kiddo. Sending you lots of love.
LikeLike
Pingback: Weekend at Brigham’s | Living With Stage IV
Pingback: Out of Gas…And Patience | Living With Stage IV