Introspection continues In October, I started a four-part blog post series that I call “Bouncing Back.” In this brain tumor-forced journey, we’ve endured unpredictable drops and turns, and yet somehow, hope and gratitude rise to the surface. I’ve enjoyed...
Introspection continues
In October, I started a four-part blog post series that I call “Bouncing Back.” In this brain tumor-forced journey, we’ve endured unpredictable drops and turns, and yet somehow, hope and gratitude rise to the surface. I’ve enjoyed sharing my ponderings on this topic and am now ready to tackle part three.
Featured at the North Carolina Museum of Art, part of the most extensive Rodin collection between Philadelphia and the West Coast. It’s my blog and I’ll brag if I want to. 
There are two thoughts I’d like to share as I begin:
First, my parents have always been proud of me – a steady platform in my life all along. Yet now I believe they are more so than ever because I am – like they and their forebears – learning to meet difficulty with grace and humor. Second, several of you have asked me to share aspects of my story that I’ve kept mostly to myself until now: the darker side of dealing with this monster we call cancer. From Paula Munier’s book, “Writing with Quiet Hands,” I’ve learned this: “Marketing writers need to forget spin and tell the unvarnished truth, warts and all.” I was a marketing writer for many years, and here in this collection of blog posts, I’ve enjoyed sharing the light, safe side of my brain cancer journey. Now as I tackle the topic of facing hardship with grace, I will strive to share more of myself, my own vulnerability, in a few of the moments on this journey.Though this post promises stories that I grew up with, that helped to shape who I am, I will start with the latest chapter in my healthcare story. As you’ll soon understand, our family’s ability to face hardship with grace is a necessary source of strength and stability as this ride continues.
Update
After a wonderful holiday season spanning my father’s 88th birthday celebration with the Carlton clan, a lovely Christmas at home with just the four of us including our traditional Christmas Eve lighting of German style candles on our tree, then New Year’s and winter adventures with the Broz tribe in Ohio, we settled back into school, work and healthcare responsibilities.
Then came the next unpredictable dip-turn on the glioblastoma roller coaster: the worst headache of my life combined with impaired motor function in my left hand. There were a few cognitive challenges as well, most humorously, a failed attempt at putting on yoga pants with both legs on one side, and not realizing my inadvertent penguin imitation until I tried to walk. The left hand malfunction was an extremely worrisome throwback to the initial symptoms before my brain tumor was diagnosed in June 2015. The attentive care team at the Preston Robert Tisch Brain Tumor Center at Duke sent me to their ER for a CT scan just in case a brain bleed in my right temporal lobe was causing pressure that would lead to this severe pain and left side motor issues.
I’m happy to report that the scan was clear. No bleed –> a massive relief. The excellent ER team got my pain under control so that I could come home. (Fun fact: the ER uses caffeine pills as one of their pain relievers.) I’m now on a dexamethasone steroid taper to relieve swelling and pressure. Next up: my oncologist is scheduling an incremental MRI before my next immunotherapy infusion so that she can get an inside look to compare to my early December scan.
During the ER visit, we met a new member of my healthcare team, the Brain Tumor Clinic’s Hospitalist, Dr. Fountain. Right there in my ER bay was someone who knew my case and understood. I started, “ The left hand malfunction is just so…” “ Terrifying!” he added. “Yes; thank you. You get it.” Once most of my pain had subsided, Dean drove me home from the ER, both of us secure in the knowledge that my doctor and her team had a firm hold on my case, as always. Daniel, my nurse clinician, checked in daily, further increasing our comfort in a difficult time. As of today, left hand issues remain but I am pain-free.
Back to that early December MRI readout: now there was a day of hardship and worry. Here are my notes from that day as captured on my phone in real-time.
As we sit in the waiting room, I feel my massive store of Optimism leaking out gradually like a small hole in a tire. Please, please let them call us into the clinic before the tire goes flat. I’ve had hopeless moments; they’re bad for me and for every soul in my path. I came here dangerously optimistic, knowing the risk of a longer fall. Yet that was my choice this day, and most: riding high is worth the occasional crash to earth. The view is just so much better from up here. Finally, Dean and Jackie and I were called back for my appointment – or more accurately, for a change of scenery as we continued our wait. Our clinic room was directly across from the Physician workroom, an unfortunate juxtaposition. Everyone in there knows whether I’m going to be okay (sooner rather than later), and yet here I am, pacing in the hallway busying myself as I try to keep air in that wheel of optimism. I’m proud and honored that Jackie chose to join us here today; she knows that I’m wildly optimistic and that I could be tragically wrong, yet she has the courage to be here for me this day, in this moment. Why must I dabble in despair? Am I preparing myself, punishing myself, or simply acknowledging yet again that this road we’re on is treacherous, and pulls from me both my best and my worst? Sometimes this feels like handling hardship without grace. Thankfully, today, grace and light shine from the presence of my husband and daughter.Results, once revealed, were mixed: within the three lesions (tumor sites) in my brain, there is a mix of near-stability (good news) and an expanded area that could either be inflammation or tumor growth. We’ve added daily oral Temodar chemotherapy back to my regimen to combat this, while continuing Avastin and Keytruda infusions.
Left: Dec 7, Right: previous MRI. Images are reversed; what we see on the left of each image is the right side of my brain, highlighting specifically here my third lesion, in the right temporal lobe.
For now, as life moves on, I am refreshing my June 2015 skills for getting by with limited left hand use. Instead of typing, I’m using my MacBook’s speech recognition app, adding punctuation with my right hand. I don’t touch anything breakable or spill-able with the misbehaving paw. I’ve added left side “exercises” to my neck/back physical therapy regimen: a few times a day, I practice picking up coins and colorful paperclips.
Is this a case of “back to the future?” Yes! And that makes my next image choice simple.
Stories
Now that I’ve shared stories of recent hardship, hopefully a bit less guarded than usual, it’s finally time to share a few of the old tales that collectively help me tackle this glioblastoma beast with grace and humor.
1: A cat’s life in the West Virginia flood
Same flood, but not the exact house from our story
My father’s family moved to Kenova, West Virginia in 1936 when his father took a role as the town’s Baptist pastor. In March 1937, an early thaw melted lots of snow, risking the town’s dike. Water in the Ohio River was higher than the town. My grandmother woke up Dad (then 10) and his sister (8) very early, frantically packing suitcases. “The dike broke, the town is flooded, and our house is going under.” Dad didn’t know how to take this news until he reached the stairwell and looked down. On the first floor of the house there was nothing but water… and a small rowboat in the entryway, which they climbed into directly from the stairs.
One of the town’s three railroad companies had a high trestle. They rowed there, ascended the stairs, and climbed aboard a waiting train designated to rescue all of the town’s women and children. The train chugged away from the station. At each subsequent village, a conductor instructed passengers to disembark if they knew anyone in that town. Our little trio knew no one. At the end of the line, in Bluefield, WV, they bought tickets to Richmond, where family could take them in. Once there, his mother was interviewed by the Richmond Times-Dispatch, and the next day’s paper featured a photo of Dad and his sister as “refugees of the great flood of the Ohio River.”
Meanwhile back in flooded Kenova, my grandfather, in the chest-high fishermans’ waders he used for baptisms, stayed behind to help with the cleanup. Each day he rowed back to the parsonage, docked the rowboat on the roof of the porch, and fed his wife’s cat.
2: Tears in London
As a child, my mother lived in London with her grandmother and Aunt. One day she went with “Na-na” to the store, but fun-loving soul that she was (and still is), Mom wanted to play in the pond instead of shopping. Predictably, she got soaking wet. The designated punishment was to stay in her room. They turned on the radio only to learn that King George had died. Instead of punishment, she got hugs and tears – a special shared time with her beloved Na-na.
3: Lightening the load of Armistice Day
In November 1918, Herb Carlton Sr, my father’s father, made his way from Virginia to the trenches in France. Within a few days, they had news at the Western Front: 11 mins after the 11th hour on the 11th day of the 11th month, an armistice would commence; combat would end between the Allies and Germany. One of the soldiers teased the others that after that moment, they’d have to carry all those heavy wooden boxes of ammo 18 miles right back to the railroad station. So they fired it off, straight up into the air. All of it. With creative license, my grandfather’s story ends this way: if the Germans had broken the Armistice, they’d have won the war because the Allies were out of ammo.
Want to hear this in my father’s voice? Check out the 4 1/2 minute audio here. Bonus: Dad sings one of his soldier-father’s war songs, “Keep your head down, Fritzy Boy.” This story is especially delightful to me as I knew my grandfather not as a former soldier but as a baseball-loving Baptist preacher and maker of grandfather clocks.
4: A dramatic rescue from Hurricane Hazel
Thanks to the treasured friendship between my parents and Mrs. Ford Worthy, the librarian at the Washington, NC High School where Herb Carlton and Gina Gray met and taught, I was honored with the request to call her “Money,” as her grandchildren did. What a special lady! Collectively, my memories of Money give me a glimpse of a more gentile time, and an image of what it meant to be an educated Southern Lady.
I remember Money’s kindness. And thankfully, I remember a few of her stories. She told tales of my mother’s beauty, of my father’s courting, of her own childhood, of the biggest hurricane ever to hit our state: Hazel. My parents’ first home together was a tiny house on Money’s river-front property. She masterfully told the story of Hurricane Hazel, which in 1954 damaged much of the area with winds and flooding. My favorite part of the story was the dramatic rescue of my parents with a row boat – complete with the visual of my mother escaping into the boat through a window from their small, ground-level home. In my mind’s eye, I see my mother in stylish suit, pumps and hat, climbing through the window of her flooded home into the boat, wind and rain, ready to enjoy tea and biscuits in her dear friend’s lovely drawing room.
Moving Into 2017
Now we all have a new year to discover and create. In yet another bout of reinvention, I am seeking a new purpose. Though physically fairly stable, fatigue limits my options. Psychologically, I’m reasonably sane, always fighting. Spiritually, at peace and ever learning. What can I give this world that has given me so much? What gifts do I have to offer? It’s the perfect time of year to ponder such a large question, and joyful to realize that other than stamina, the possibilities are limited only by my own creativity and initiative. Perhaps we are all right there together.
I’ll end with a note of gratitude inspired by the Christmas season. This was an open letter to the people of Merck, delivered by my new friend Jennifer who joined that innovative company to be part of their leadership in immunotherapy treatments for cancer, and Keytruda in particular.
Statement of gratitude from a Duke Brain Tumor Center patient:
In June 2015, after a vibrant 30-year career in the tech industry, I became a glioblastoma (recurrent brain cancer) patient at the Duke Cancer Center. Even with the best of medical care, loving husband and children, and supportive community, this journey is a roller coaster ride, the path of disease unpredictable. With each partial success and failure, my team at Duke has presented choices for a next treatment approach. Their slogan, “At Duke, there is Hope,” is largely realized due to this approach of continually providing next steps when needed.
In late September 2016, after three types of chemo had failed to stabilize my three tumor sites, my condition worsened and for a short time, our options were uninspiring and worrisome. Then my expert medical+pharmacy team at Duke invested countless hours working out an innovative approach – one in which I’d be the first patient ever. You can guess what’s next: I am now the first person in the US (perhaps the world) to receive Keytruda for my particular form of glioblastoma. Every three weeks I make the short drive from Chapel Hill, NC to Duke for the infusion.
Keytruda has improved my life – and that of the people who love me – in three ways:
Renewal of hope: A new and different approach meant a return to positivity after a trying time. The gift: a return to being who I really am. Feeling great: We removed toxic chemo (and its trusty companion, fatigue) and instead employed my always-strong immune system to fight the beast. Since then, I’ve felt great! The bounce in my step returned. People tell me my skin looks good. I wake up committed to having a good day, every day. I am fully enjoying my life, able to take good care of myself and others, and hopefully setting an example of strength and perseverance for my teenage children. Progress: Nine weeks after starting my Keytruda infusions, an MRI showed some progress. We’re not done yet; there is a lot of work left to do. And yet… it’s working!I believe that Keytruda is saving my life and keeping my family whole.
For this, I wish to express gratitude to everyone who is leading the way into the amazing world of immunotherapy cancer treatments, and in particular to everyone at Merck who has helped to bring Keytruda to market: scientists, manufacturing and operations teams, sales, communications and marketing. Thanks to your efforts, my family remains intact and positive and I have the opportunity to give back to the world in ways I’m only now starting to imagine.
THANK YOU ALL.
Beth Carlton
