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.
Today is brain surgery day and I’m up at 4am wondering what I’ve forgotten to do in preparation of being out of commission for a few days. I’ll admit I have some minor nerves and some major thirst and hunger this morning (dang pre-op fasting). I suppose it’s inappropriate to be looking forward to a long, anesthesia induced sleep (but I am).
Since I’ve been forgetting virtually everything the past month or so after being introduced to the world of seizures (and antiseizure medication), I of course also forgot that I had planned on showing Tim the WordPress ropes before today so he could update everyone on the surgery with a blog post. So I’ll do my best to manage a post-op update from my phone app tomorrow, but can’t promise anything. Maybe I can find an ICU nurse that blogs.
I’m repeating myself but I can’t say enough about the amazing outpouring of support from everyone and our appreciation for the generous donations to my Dad’s memorial/PFM bucket list fund. So far we have raised $11,000; we thank our good friend Lynn for being our biggest cheerleader and helping to generate a huge boost in donations this past week. And the messages of encouragement from everyone who has reached out continue to keep us going. You guys all rock and we love you.
Much love, Paula and Tim.
Hi friends. We have a surgical date for my brain biopsy and ablation – Wednesday March 22nd.
We met with Dr. Chiang again yesterday to walk through the details of the procedure. I’ll arrive at the unpleasant hour of 6:30am to get prepped for surgery. After I’m anesthetized, they will drill a small hole (about the diameter of a pencil) into the back of my skull where the laser device – called the NeuroBlate – will be inserted. Which means I’ll lose a little patch of my new crop of hard earned hair, but I’m over that already.
Dr. Chiang’s team will be taking MRI images throughout the procedure to guide the device into the right area of my brain. After they take a biopsy, or tissue sample, of the problem area, Dr. Chiang will use the laser to heat up and ablate the tissue. This will kill any cancer cells that are present and can also help “calm down” the swelling that is the result of either cancer regrowth or radiation necrosis (which of these two are present in the tissue will be revealed with the biopsy). The pathology results on the biopsy will also help guide Dr. Chiang in how aggressive she needs to be with the treatment area. If cancer cells are found she will “burn” a wider area; if the tissue appears to just be radiation necrosis she will treat it more conservatively. This is a little different then what I explained in my last post, as I originally thought the ablation would only take place with a biopsy that is positive for cancer regrowth.
The procedure will take about eight hours to complete. The hole is then closed with one or two tiny stitches, and afterwards I’ll spend the night in the ICU. If all goes according to plan they will move me to the regular neurology floor the following day. I shouldn’t be in the hospital more than 2 or 3 days, tops.
So now it’s essentially a lot of waiting until the big day. I’m hoping I don’t get any big eleventh hour surprises from the insurance company, as they decided not to cover the MRI I was supposed to have this past Friday. Fortunately, the last MRI I had in the hospital is recent enough for the neurosurgeon to use for planning purposes (and new MRIs will be taken throughout the procedure itself). I do know that our insurance company has requested more details on my case from Dr. Chiang before they will approve coverage for the ablation, so I’m now doing the “let’s check the insurance website every couple of hours for a new EOB statement” dance. Yale has been very proactive in jumping through insurance hoops in the past so fingers crossed we won’t have any hiccups.