Weekend at Brigham’s

We had a surprise overnight stay in Boston last weekend. On Saturday, we drove Jasper to Logan airport for a spring break trip to Arizona to visit a friend. After that, we took Chris to dinner for his birthday at a spot near Fenway. The plan was to head home to Old Saybrook after that, but it turned out my body had other ideas.

Near the end of our meal, I started feeling quite sick. I was going to head to the car to lay down but realized I wasn’t going to make it that far. I put my head down on the table to try and collect myself, and next thing I knew, I was waking up with Tim holding me. Much to my chagrin, I then proceeded to throw up all over his dinner plate (we left the waitress a very large tip).

To try and make a long story short, we thought that I may have experienced another seizure. An ambulance came and the EMTs wanted me to get checked out given my recent neurosurgery, so they took me to the emergency department at Boston’s Brigham & Women’s hospital. But when blood tests were run and my mental status remained pretty much unchanged (i.e. no memory loss, confusion, or balance issues like I usually have during and following a seizure), the consensus was that I fainted because of dehydration and low blood pressure.

benegativecatThe dehydration was likely due to the fact that I’ve had bathroom issues, nausea, and overall blechiness since last Monday. When you are stage IV, every ache, pain, and other discomfort immediately makes you think that a) the cancer is spreading or otherwise flaring up, and/or b) you are having side effects from treatment. This time it may have been the result of a garden-variety stomach bug, or what my friends with diabetes like to call being “real people sick” (i.e., sickness not related to their chronic illness).

At any rate, the doctors wanted to keep me overnight for testing and observation, so I was moved to a single room with a recliner for Tim on their observation floor. They ran a slew of lab tests, a CT scan on my brain (just in case), and a cardiac stress test. One of the potential side effects of Herceptin and Perjeta, my immunotherapy treatments, is that they can cause heart damage, so they wanted to be sure that I hadn’t fainted due to an emerging heart issue. While some of my blood tests were a little off due to the dehydration, I passed the stress test without a problem. A few bags of fluid, some supplements, and lots of Zofran later, and Tim and I were finally on our way home late Sunday afternoon.

Props to the capable and compassionate staff at Brigham and Women’s, who made sure we were both taken care of and comfortable. And the floor was blissfully quiet, such a rarity in hospitals but so important as it let me actually sleep the night I was there. I will definitely be giving them some love when the patient satisfaction survey comes in the mail.

And even bigger props to Tim and Chris for helping this poor old lady out. Tim, I couldn’t get through this without you, and I’ll try to get us through the rest of the spring without you spending another night in a hospital recliner. And Chris, we owe you a proper birthday dinner.

Coming up next week, I have a bone scan, CT scan of my body, and an echocardiogram (to follow up on the fainting incident). I’ll keep everyone posted on my progress. My motivation to write has been low lately, mainly due to the way I’ve been feeling, so I’d really like to shake this bug soon.

Finding My Words Again

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.