Chi-Town Adventures

My bucket list 2017 Chicago trip is complete! While we had to make some last minute adjustments to accommodate an afternoon in the ER, it was a wonderful vacation filled with friends, family, food, music, and love.

Your Obedient Servant, A. Ham

We flew in Thursday morning and were fortunate enough to stay at the Palmer House, which is just half a block from the Private Bank Theater where Hamilton is currently playing in Chicago. Thursday was a sightsee (from the car) and settle in day (the theme of this trip was slow and steady wins the race).

IMG_5904Tim spent Friday channeling his inner Ferris at the Art Institute of Chicago, just a block away, while I caught some much needed rest before the show. Hamilton was just incredible. We had fourth row seats and the cast, music, and staging was amazing. As the song says, it blew us all away.

Despite my slowed pace, we did plenty of touring in the car through the city, catching some iconic museum and park views and enjoying the gorgeous weather. We learned on our arrival that it happened to be Pride Fest in Chicago that weekend, and we would have also enjoyed taking in the parade and the special celebration at Navy Pier. But my body wasn’t quite up to the physical demands of that much walking, so we sat it out this time.

My AH Crew

We spent Saturday in Arlington Heights so I could see (and show off) my hometown. We probably could have spent another full day there exploring, as things have changed so much. Of course we made a critical stop at Portillo’s for an authentic Chicago hot dog (so much better than the East Coast version – sorry NY system lovers). And deep dish Lou Malnati’s pizza was also consumed before heading back East. Chicago food goals=complete.

Arlington Heights friends

Wonderful friends from my youth (Back row, left to right – Jen, Amy, Mandy, Elizabeth, Me, Paul/Punky, and Jane; Front row, left to write – Susan, Mary, Michelle, and Phyllis).

On Sunday, my dear friend Susan and my mom threw a party in my honor with a bunch of my childhood friends out at my mom’s house in Huntley. The day was absolutely my favorite part of the trip (with apologies to A. Ham). I saw many special friends from grade school and high school, and it was so much fun to catch up on everyone’s lives and look through the old pictures that they were kind enough to bring along. I’m so grateful that they travelled to see me and that Tim got the chance to meet these special people in my life.

Family also stopped by and I had the chance to see my Uncle Ray, his partner Mary, my cousin Morgan, and my Aunt Sandy and Uncle Marvin (who were fresh from their 50th wedding anniversary celebration in Iowa). I don’t get to see these folks very often (and for Tim, it was a first), so it was an added treat.

Home Again

We canceled the Milwaukee leg of our trip in favor of spending Monday afternoon in the Huntley ER. Although I missed meeting up with a few good friends, it turned out to be a good decision; I needed the fluids and electrolyte boost to get back home safely and comfortably. We returned to Connecticut late Tuesday night, woke up early for scheduled bloodwork on Wednesday, and then hit Yale late Friday morning for the lumbar puncture procedure (to check my spinal fluid for signs of leptomeningeal metastases). That went smoothly and I’m awaiting results, but due to the holiday weekend we may not hear anything until Wednesday, 7/5. I’ll keep everyone posted on the results and plan of action.

What’s Next?

My lovely sister Marlo is coming to visit this week (yay)! We may or may not get a bucket list item off the list (read: tattoos) if my oncologist doesn’t have any objections and my chemo-related side effects decide to settle down a bit. My white cell counts are good so I’m hoping it’s a go from that perspective. Cas and I also have a matching tattoo date coming up. Jasper will of course remain ink-free for now, and he is having a blast visiting his best friend Nick for a good chunk of the summer.

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.

harryheadwound

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.