There’s No Place Like Home

Have you ever wished to borrow Dorothy’s ruby slippers to just take you home on command?  We did, a month ago, when confined to rehab for an expected twenty-one days.  But Dorothy’s slippers reside at the Smithsonian, and not in Durham, North Carolina, so no clicking of heels for me.  We considered a dramatic breakout using Kim’s new red Chevy truck but after a week we chose our moment of freedom and snuck out to the parking lot and into our minivan, still salt- and sand-coated from its latest sailing trip to to Lake Jordan with teens, dog and Cool Ranch Doritos.

At home, time to unpack.  First, the items always at reach on my bedside table were redistributed on the rolling table next to my window-view hospital bed.  From this lovely perch, I look over the Key West coffee cup, writing pad, and Kleenex box and into the backyard with its flowers, swaying trees, and two wandering cats. Birds chirp their morning symphony.  The neighborhood’s expanding supply of young children add their delightful squeals and giggles in early afternoon.

The less pleasant side of unpacking at home involves my abscess wound.  When a wound is deep, packing the wound with cloth strips can help it heal. The packing strips absorb drainage from the wound, which helps the tissues heal from the inside out.  Enough about that – it is healing well.

Then there is emotional packing and unpacking, which have long been a part of this journey. So-called “negative emotions,” including grief and loss, fit my predicament and deserve time, but I will not dwell there, and I will not let a negative tone dominate my interaction with others.  In conversations that included as many laughs as tears, the Brain Tumor Center’s neuropsychologist, Dr. Renee Raynor, taught me that I can pack up each of these emotions and put them on a shelf in my mind where they will be available when I need them. Then I can unpack each as needed, spend time there, and pack up again.

Sometimes, Dr. Raynor advised, the emotions choose their own timing. “Expect an occasional game of ‘whack-a-mole,’” she said. “You won’t know which is popping up next, yet you’ll still have the power to choose where you invest your attention, and when to pack them back up and store them on that shelf.”

Sometimes a mole pops-up as Dr. Raynor predicted, and sure enough, I can choose whether to unpack and be with that emotion or whack it right back into hibernation on the spot. Occasionally, in a tired afternoon moment, I realize I have time – and emotional strength – and choose some deserving topic from that shelf to ponder. Careful not to cry myself into a headache, I find these sessions honest, moving, real and therapeutic. I am in control. I can control when to experience each emotion.

Let’s pack up that subject.  I’m home, and there’s no place like home.

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Not Where I’m Supposed to Be

On the morning of April 2nd, my family awoke to the news that my father had died during the night. Upon hearing this, I was not where I should have been. I belonged next to my mother and brothers in that moment, in our family home in Greenville, North Carolina, Instead, I was in a room in Duke Hospital, Dean a few yards away in a recliner. Somehow we would all face this day and those to follow with a positive attitude  – that is a lingering gift from Dad to us all.

“There in Spirit”

My father’s memorial service was held Wednesday, April 5 at 1 p.m. in Greenville, NC.  Physically, I was not able to be there due to doctor’s orders not to make the car ride.  Yet in every other possible way, I was present.

To borrow a favorite phrase of my mother’s, I was “there in spirit.” In this sense, I was sitting in my rightful place with my mother, my brothers and their wives, and with my husband and children.

Vicky Jaimeson-Drake, dear friend and associate priest at Chapel of the Cross, my church in Chapel Hill, was with me in my rehab room in Durham and together we read the service from the Prayer Book at the same time as the gathered friends and family in Greenville.  This was a beautiful gift to me, and to my mother, who knew about this arrangement in advance.

I missed sharing the greetings, hugs and stories of those who gathered in Greenville.  I would have enjoyed thanking each close friend for the unique joy they brought into my father’s life.

With the passing of Herb Carlton, the world has lost a great man.  He was of service to so many, a friend to so many, and his optimism will continue to inspire us as we move on.

Dad’s positive attitude has been a gift to me my whole life through, and I’d like to share here one of the ways I attempted to thank him for that:

Father’s Day Note to Dad, 2016

Dear Dad,

I’ve learned so much from you through the years, and still do. Of all of it, perhaps the most valuable is the learned skill of facing the world with a positive attitude.

In the past year, that’s been a major contributor to my recovering health – and a reason so many friends have supported me.

All my love, 

Beth

From Black Tarp to Rehab

So, how did we get here, in the hospital?  Unbeknownst to me at the time, the March 10 infusion of my new chemo med, CPT-11, was accompanied by an anti-nausea med that I don’t tolerate well.  Days later, a chain reaction set in that led me through a variety of minor gastro-intestinal issues.  The final issue wasn’t minor at all: a painful 5 x 8 cm abscess that caused urine retention. It was time for the ER.

I don’t recall much except suffering before the ambulance arrived, but I do remember the ambulance ride and the black tarp. The ambulance transport was on a stretcher of course, but getting onto that stretcher was a unique experience this time.  The EMTs and firemen used a black plastic tarp with handles on the sides to lift me.  Lying on my bed, I heard “On three – one, two, three!” and landed gently, face down, nose pressed firmly into the utilitarian black plastic tarp.  Four strong men carried me down the stairs and onto the stretcher. Dean rode with me in the ambulance – though he had to ride up front, I enjoyed knowing he was close by.

The ambulance ran with no lights, horns or sirens,  except for the time Dean accidentally stepped on the horn button.  I spent the ride wondering if my post-chemo puffy face would retain an imprint of the plastic tarp, hoping it might be possible to capture that in a photo.  No such luck: we arrived at Duke, they peeled me out of the black cocoon and the E.R. experience commenced.

One CT scan was all it took to make the problem and solution clear: In an emergency procedure, the General Surgery team removed the abscess.  With that mass gone and bladder clear, we were admitted into a post-op room on one of the “neuro” floors. Even though the surgery wasn’t on my head, I’m still always a neuro patient any time I step into a Duke facility.

I spent five nights as an inpatient, during which we realized that I needed nursing care beyond just the basics; I couldn’t be discharged home.  Dean – with help from our friend Carol and from the team at Duke – checked out options for rehab facilities, which we expected I would need for one or two weeks.  After assessing which facilities would accept new patients straight into nursing care, had beds available immediately, were near our home, and would accept our insurance, we selected the Brian Center as my temporary residence, and were able to get transported and settled into the room Monday night.  I’ve got a garden view and guest seats, both of which I’ve enjoyed in my few days in residence so far.

The Goal here is to get out of here

My one goal at the rehab center is to leave.  To earn that discharge, I’ve got to heal and I’ve got to work as hard as I can in physical therapy to regain lost strength and re-learn some basic “around-the-house” type skills.  Meanwhile, Dean will work through the challenges of getting the house ready for my return (hospital bed, nurse visits, and such).

Today, I am where I belong 

My brother Roy and his wife Susan are bringing my mother to visit me today, and at long last I will be at her side, and her at mine.

Back to Dad

While all of this was unfolding on the healthcare front, we learned of my father’s death.  I’d like to end this post by sharing more about this great man’s life; to that end, here is his obituary:

dad in hat

Herbert Raymond Carlton, Jr. died on Sunday, April 2, 2017. He was born December 20, 1927 in Richmond, Virginia to Annie Martha Long Carlton and Reverend Herbert R. Carlton.

Herb spent most of his youth in Galax, Virginia, which he considered an ideal small-town American community. He earned the rank of Eagle Scout and served as co-captain of the high school football team. Herb graduated from Galax High School in 1945.

Near the end of WW II, he enlisted in the U.S. Marine Corps, which he considered a wise decision and meaningful experience. Following an honorable discharge, Herb enrolled in East Carolina Teachers College in 1949. He was active in the Veterans Club and in the newly-formed Air Force ROTC training program, earning a USAF commission in 1951. Herb graduated with a B.S. in Social Studies and Physical Education in 1952 and a M.A. in School Administration in 1954.

Following graduation, he worked in Washington, N.C.’s high school, where he taught, served as assistant football coach and became the school’s first Assistant Principal. In Washington, Herb met the love of his life, Virginia “Gina” Gray.

Herb and Gina married on April 6, 1955. Herb remained dedicated to his beloved Gina through 62 years of marriage, with lives interwoven, supporting and caring for each other, still holding hands and sharing every meal. Together, Herb and Gina took several “dream trips” after retiring, including destinations as diverse as the Arctic Circle and the Panama Canal.

In addition to dear Gina, he is survived by his son, Roy Oliff Carlton (and wife Susan Williams) of Greenville, his son, Jim Carlton (Linda) of Clarkston Michigan, his daughter, Nora Elizabeth Carlton (Dean Broz) of Chapel Hill, and two grandchildren, Alexander Turina Broz and Jacqueline “Jackie” Carlton Broz of Chapel Hill. He is also survived by his sister, Carolyn Carlton Hollowell, and her husband, Greene, of Richmond, VA and their children and grandchildren. Herb anchored the Carlton family as husband and father, as father-in-law, and as grandfather.

In 1958, Herb joined the ECC Social Studies Department Faculty as Assistant Professor and Director of the Department’s Student Teaching program. From 1963 to 1964, President Leo Jenkins wisely divided the Science and Social Studies Department into several subject-matter departments. Dr. John Howell, first chairman of the new Political Science Department, selected Herb as one of five founding faculty members.

From 1964 to 2004, Herb taught American Government, International Relations, National Security Policy, and Contemporary Political Issues. As faculty advisor, he counseled all undergraduate political science majors from the 1960’s until his retirement in 2004.

During the Vietnam War era, Herb taught National Security Policy for ECU’s Continuing Education Division in night classes at Camp Lejeune and Cherry Point. He often commented that Marines returning from combat taught him as much as he taught them.

When ECU established two scholarships to annually recognize one female and one male instructor, Herb was the first male honoree. When a similar award was initiated regarding faculty advising, Herb again was the first recipient. Herb regarded teaching as a totally rewarding experience and considered working with ambitious young people a joy. After 53 years in the profession, he retired in 2004. For a few years, he continued to be a volunteer faculty advisor for General College students.

From 2004 onward he was an active member of the ECU Retired Faculty Club, serving two years on its board and as its Membership Coordinator. He was an active member of St. Paul’s Episcopal Church from 1958 onward, including serving in its Food Pantry outreach program.

 Always a planner, Herb’s organizational skills benefited his many environmental and community efforts. He served on the Public Works Department citizens’ committees dealing with recycling and drafting the master plan for the city’s Greenway System, was a member of Friends of Greenville Greenways, and joined ReLeaf: Advocates for a Greener Greenville, shortly after its founding, serving three terms on its Board and as Treasurer in the 1990’s.

Herb joined the Sierra Club Cypress Group in 1975, served two terms on its Board and as service projects coordinator (highway clean-up, trail construction and maintenance at Goose Creek State Park, etc.), and led over 50 outings, primarily hiking/camping and week-long backpacking treks on the Appalachian Trail. In 2000, the National Sierra Club presented Herb with its annual outings leadership award, normally presented to outings leaders in the western states or Alaska.

Preservation of the Appalachian Tail was a passion; following retirement, Herb joined the Mt. Rogers A.T. Club and spent over 700 hours as a trail maintenance volunteer on the A.T and other trails in Jefferson National Forest. He received special acknowledgement for his contributions to the Appalachian Trail Guide to Southwest Virginia. Health factors ended this work following the 2012 hiking season.

In addition to having an outstanding wife, parents, and family, one-and-all, scores of friends were highly influential in Herb’s life. Any listing would surely include Coach Tom Morris and Mrs. Mary Guynn of Galax, VA; fellow Marine and college roommate, Raymond Gordon; Washington High School Principal Joe Kornegay; ECU colleagues Dr. John Howell, Dr. Tinsley Yarbrough, Ms. Marguerite Perry, and Mrs. Cindy Smith; Sierra Club friends Dr. Earl Trevathan and Grace Smith; AT colleagues Dave Thomas and Bill Finch; and St. Paul’s Reverend Bob Hudak.

Herb had an ever-positive attitude that drew others to him and enhanced the lives of his friends, students, and acquaintances in the community. He had a knack for remembering names and making people feel special. An excellent story-teller, Herb’s conversations often included humorous tales of antics from college, the Marine Corps, and beyond. The best of these included his singing favorite “hillbilly” songs.

Herb’s philosophy of life may be most easily shared via his favorite couplet:

“Only one life will soon be past; only what’s done for others will last.”

To see that in others, he might have responded “good shot!”

“Bouncing Back”Part Four: Inspiration from Angels in my Path

The last in this series of blog posts was promised as a tribute to a few of the people who have appeared on the path of my brain tumor journey and helped me persevere and soar. I like to call them my “angels.”

We all cross paths with special people every day. Even the slightest smiles from strangers elicit gratitude. Yet occasionally, my journey intersects those of individuals who really make a sizable difference. Now, 21 months after initial discovery of my brain tumor, this post only mentions three of these angels, but is dedicated to them all.

On the Healthcare Front

Sometimes it’s as simple as a gracious, smiling phlebotomist in the Duke Cancer Center blood draw lab, giving a pleasant start to what will likely be a tiring day of clinic visits and infusions. “Miss Nora” they call me, using my legal first name with the endearing Southern salutation.

Four of every six Fridays,  I head to Duke for blood tests (which, thankfully, have always provided healthy results) and IV infusions. Every other week, Avastin. Every third, a dose of my beloved Keytruda immunotherapy dream-med. On each of those days, I have a neurology exam with one of the physician’s assistants in my neuro-oncologist’s team. Yes, I can remember three words for five minutes and even spell them backwards when prompted. 97 minus 9 is still 88. I can stand with arms outstretched, close my eyes, and not fall over. Surely this gets dull for the PA’s, so with new staff, I do this last task in tree pose.

At home,  I take good care of myself with lots of help from Dean.  I take Keppra anti-seizure pills, walk when stamina allows, nap daily, and swallow Temodar chemo at bedtime.

Though I feel well, my  appetite is suppressed.  I enjoy lots of small meals.  This can generally be healthy,  yet I’ll confess one notable exception to that “health” claim:  it’s Girl Scout Cookie season now,  during which four Caramel Delites equate to one small meal.

Time with family and friends rounds out a nice day-to-day life that, while centered around healthcare, is not dominated solely by that responsibility.

Timing has been super lately for sports:  Jackie’s club volleyball season is in full swing (pun intended)  and Alex’s  swim season just wrapped up, peaking with his freestyle relay team in the NC state finals competition. I watch both of my athletes– and  enjoy snapping photos of the action – yet  more evidence of my overall well-being even as we fight the glioblastoma beast.

Version 2   jackie-hit

 

As happens on unpredictable roller coaster rides,  we do still have an occasional unforeseen drop/turn on this journey.  Most recently,  on February 6, 7 and 8th, I  experienced symptoms of what may have been very minor seizures.  Late morning on each of those days,  the left side of my face rhythmically convulsed.  The third time it happened,  I captured a selfie video which allowed my doctor to suggest next steps without need for tests. I wonder if Stephen King might be able to use that iMovie clip in his next film;  perhaps only he could imagine an otherwise-friendly face expressing such asymmetrical menace.

In this unexpected health crisis, as in others before it, my angel was Nurse Clinician Daniel Rudd from the Preston Robert Tisch Brain Tumor Center at Duke. With Daniel advocating on the case,  we quickly had updated medications in hand and welcome reassurances in mind. While I remain pleased with my entire care team at Duke,  in moments of crisis, it means so much to have a specific individual to whom I can reach out, knowing he will work across that team to help me through with competence, speed, and personalized attention. This allows me to more quickly get on with all the good in life.

“Putting a Face on Glioblastoma” to Influence Future Doctors

In August, when I spoke at Duke’s Fuqua School of Business,  I met MBA-MD student Phillip Tseng.  Recalling the patient visitors during his “Brain and Behavior” class from his first year in medical school, Phil connected me with the professor of that course, who invited me to present my story on January 25 to Duke’s first-year med school class. What an honor.

These students have a daunting academic workload – covering in one year what most medical schools cover in two. “Patient encounters” in clinic and in the classroom provide an opportunity for them to see how the pieces fit together in one patient. Phillip inspired me in advance with the concept that patient encounters also help remind these busy students why they chose this education and profession.

My presentation started with “I was healthy for 52 years” then my glioblastoma story unfolded. Between facts of what happened and how, I emphasized the approach to care at Duke – in keeping with my much-repeated commentary on how the staff there generates hope for patients and families even in the most difficult moments.

healing

I so enjoyed the time among these students, and it felt great to be using residual business skills again. For me, this is what soaring looks like.

During the time of their studies and practice, these 120 future doctors will see cures come to market for some of our most disruptive diseases. They’ll have the opportunity to save more patients – keep more of our families intact – than any preceding generation of healthcare providers. Some may become researchers who discover new cures. How wonderful that they’re taking on this rigorous training and difficult lifestyle. It’ll benefit all of us.

I ended my presentation with a heartfelt “Thank you for becoming healers.

If you’d like to check out the presentation, you can find it on YouTube here. The photo-journal slides don’t show up in the video but that pdf is included below in case you want to scan those with or without the talking-head video.

Carlton-DukeMed-jan-25-2017-for-use-with-video

Sharing the Treacherous journey with a Fellow Traveler

Sometimes my “angels” are people I “meet” after a search engine pulls up one of these blog posts. These folks know what it’s like to have a normal life vastly altered  in this particular way. Amy’s sister found me when she searched on “glioblastoma and Sym004 trial.” Amy is a fellow Duke patient who lives nearby. We corresponded, then last week met for a nice lunch and long conversation that spanned Sym004 side-effect commiseration, the challenges of raising children while fighting a major disease, giving up careers, and the desire for predictability in health – and in life.

The series is over… but the Bouncing Back will continue! 

This set of posts allowed me to explore how I have developed the (1) resilience, (2) optimism, (3) ability to face hardship with grace, and (4) openness to inspiration from others that collectively keep me bouncing back. This continues, as does my gratitude for you all.

Beth

“Bouncing Back” Part Three: Facing Hardship with Grace

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.

thinker

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.

carlton-clan  Version 2

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.

dec-7-mri   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.

bttf_the_future_is_now_2000x840-1

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

kenova-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.

keytruda-pembrolizumab-mk3475-lung-cancer-melanoma-drug-580

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:

  1. 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.
  2. 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.
  3. 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

 

 

“Bouncing Back” Part Two: Hope

As my reminiscing continues, it’s time to tackle part two of this “Bouncing Back” series of posts.  My greatest asset in fighting cancer is hope. It helps me stay positive, and is fundamental to my enjoyment of every day. Lately I’ve pondered this: given the challenging circumstances with glioblastoma, where does all that hope come from?

SOURCES OF HOPE on this brain tumor journey

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Feeling good is a source of hope.

Having given up toxic chemo for Keytruda immunotherapy that super-charges my body’s own defense system, I feel great! My only pain is muscular: right arm and neck/back. Neither of these has anything to do with cancer, except that my core strength and posture both faded a bit in the last 16 months.

The first complaint is tendonitis in the right forearm. I was out of shape and full of energy. The weather was stunning, the yard a mess. You can predict what’s next: I cut dead limbs and pulled every weed and vine in sight. The rewards: a lovely view of cleared, newly-mulched garden beds and the satisfaction of large yard refuse piles.

The more notable complaint is, literally, “a pain in the neck.” My September spinal MRI showed a bulged disc between vertebrae C5 and C6.  The body responds to protect its spinal cord, so a group of muscles came to the rescue by tightening… a lot. These heroes span my right neck, right trapezius, and along the spine from skull to mid-back.

The pain isn’t severe, but it’s constant. I’m beating it down with a blend of physical therapy appointments, twice-daily stretches and exercises, an over-the-door neck traction device, massages, reiki and acupuncture. I’m gaining appreciation for ancient healing arts as the pain subsides. Modern technology contributes with daily naps in “zero gravity” position in our new ergonomically-optimized, Scandinavian-styled heated recliner. I’m taking control of my body, spoiling myself, and loving it!

healing-hands

Given that I feel great, I must be doing well inside, too, right? That hope helps me start every morning with the intention of having a good day. I enjoy each day fully. This is a beautiful way to live.

Being a patient at Duke is a source of hope.

In previous posts I’ve expressed gratitude for my amazing healthcare team and their world-class technology. The culture of hope at the Preston Robert Tisch Brain Tumor Center at Duke spans pharmacy experts, therapists, nurses, PA’s, doctors, and support teams. They work together and they don’t give up.

When a treatment doesn’t perform as expected, there is always a next one. Most recently in my case, these advocates pulled out all the stops to get me onto a promising immunotherapy. Given the leap in progress from a Friday to the following Tuesday, I suspect they dedicated their weekend to collaborating – with the goal of making me well. Since then, with each drip of Keytruda that enters my veins, I feel a sense of calm.  We are fighting to win!

Research and new cures are sources of hope for all of us.

Research investments = new treatments and cures. It takes time, and it’s hard work, but we all see good news about cancer treatments regularly.

’tis the season of thanks, and I’ll use this opportunity to again express gratitude to everyone who supported my Angels Among Us fundraising efforts in 2016 in support of brain cancer treatment research for patients of all ages. In 2017, my friends Stacey and Robin will co-lead the continuing “Beth’s Backers” efforts including (1) recruitment of team members (runners & walkers) for the April 29 event on Duke’s lovely campus and (2) supportive fund-raising to ensure we double last year’s total. For more info: angelsamongus.org –> teams –> Beth’s Backers.  (Click “Join team” for April 29 race day participation.)  Ellen Stainback, this post about hope is dedicated to you, as you shower so many people with hope every day with your leadership of Angels Among Us. 

Faith provides hope.

I believe that the love I give and feel from others is part of something larger that ties us all together. I’m grateful for the lightness of forgiving and the grace of being forgiven. (For me, forgiveness has a soundtrack: Bach’s Cello Suites in G major.) These and related beliefs generate unbounded hope – for respect among people, for peace on earth, and for healing of all.

Friends surround me with hope. 

There are too many examples to share (I am a “lucky girl”) but here’s one from last week: I sang to my iPhone the lullaby I created for Alex and Jackie as babies, and my friend Boykin asked her son Jones to transcribe it. He went above and beyond, composing and recording music to beautifully complement my simple melody. Later, we’ll record his piano and my voice together.  Hope realized: I will sing this special piece to my great-grandchildren!

Alex lullaby p1.png Alex lullaby p2.png  Jackie lullaby p1.png  Jackie lullaby p2.png

 

My children fill me with joy and hope every day. 

Dean and I are blessed with two wonderful kids. As Alex and Jackie transition from childhood to adulthood, I see who they are, and am eternally grateful.  Their commitment and hard work inspire me. Their strength and goodness give me hope – for them personally, and for their generation’s stewardship of our world. Spending time with Dean and our children – both simple and extraordinary moments – makes it easy to keep up my fight and to live joyfully each day.

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I’m reminded of a song that I’d like to share as a suggestion for your listening: James Taylor’s “Shower the People you Love with Love” sung by JT himself or sung *to* JT by the Dixie Chicks.

 

Thanks to these sources of hope, each time I encounter a new roadblock, I’m able to reinvent myself within new constraints, get to know this altered self, bounce back, and give back. I have dark moments, but tapping into this vast store of hope, I envision what may be possible and face the future with optimism restored. Hope, and my ever-increasing capacity for gratitude, comprise the silver lining in my cancer cloud.

I hope all of your clouds have silver linings too.

And I hope you dance.

What does that mean? Glad you asked. I’ll let Lee Ann Womack answer with the lyrics to her song. For me, this is primarily a song from mother to children, but here, it’s from me to all of you.

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“I Hope You Dance”

I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
God forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance,
I hope you dance….I hope you dance.

 

-Beth

 

 

“Bouncing Back” Part One: Resilience

16 months into this awkward brain tumor journey, I’m feeling well and musing about how I got here. This is not a search for the cause of my glioblastoma; that will remain unknown. Rather, it’s a silent search for how I became a person who can endure the dramatic drops and turns on this crazy roller coaster ride and keep bouncing back. First chemo stops working? Try a second type. Then a third. Bad news? Unpack it, give it its time, then pack it up and keep going.  With each fresh challenge, find a new source of hope.  I’ll admit this is tiring. Very. Yet it sure is nice to find this trait at the ready when I need it.

The answer to this “bounce-back” question appears to be multi-faceted, and as I ponder, four themes emerge.

  • Resilience: Skills learned from work & colleagues
  • Optimism: Sources of hope on this winding road
  • Facing hardship with grace: Internalized from my parents’ stories
  • Inspiration: Insights from the many angels in my life

To make this writable -and readable, for anyone generous enough to plow through such contemplations – it’ll be four posts.

First, a brief update. My most recent post described a new immunotherapy treatment. Two weeks in, I feel great! In the absence of chemo, I’m less fatigued, walking more, sleeping better, and thinking more clearly.

Now, on to the bouncing-back pondering, starting with theme #1.

 

Learning Resilience from the World of Work

Given how many hours of my life have been spent working, one would hope I learned some life skills applicable to any situation. Sure enough, as I ponder resilience, I know that one of main training grounds was the world of work, with each job providing its lessons.

As in any career, I’ve seen some tough times yet with the kindness of time, what I most recall are hard work, fun, laughter, getting to know some amazing colleagues, and learning from them all.

You may not have long to read this, but I’ve got all day to write it, so what the heck, I’ll start at the beginning. Short on time? Just scan the photos. I do so enjoy choosing those each time I write.

 

The Pre-College Years

Mixed in with baby-sitting gigs, I had a volunteer summer job at the United Cerebral Palsy Center just a short bike-ride from my family’s Greenville, NC home. I played with disabled children, befriending one in particular: Anthony. Using cumbersome leg and arm braces, this ~eight year-old could walk slowly on his own. When we packed up the church van and headed to the town pool, he struggled to move without help, longing for independence as we all do. Yet he feared the dangerous uncertainty of water, and sat safely shaded under a tree.

One day, I indulged Anthony’s interest in superheroes with a book about Aquaman that I’d found at the county library. “Do you want to be like him?” I asked Anthony.

aquaman

During the next pool visit, he agreed to sit with me on the side of the pool with his feet in the water. A week later, he sat on a step in several inches of water. Back at the Center, we kept talking about Aquaman. Then one day, he did it: Anthony let me guide him into neck-deep water. What bravery! Such joy! As I held him tightly, he lifted his feet, felt the water’s embrace, and experienced near-weightlessness without heavy braces. I believe that in that moment, Anthony felt free.

What I learned: sharing in others’ challenges and successes is a gift.

Here I am setting out to write highlights of a 30-year career, realizing yet again that my greatest accomplishment “at work” was when I was twelve. Thank you, Anthony, for the gift of your trust.

The first “real job” provided a first paycheck on my 16th birthday. My mom helped me land a position with an opportunity to further develop a childhood skill: sewing. I worked at “Fashion Fabrics,” helping shoppers find patterns and cloth to fit their style. My favorite part: altering patterns, getting the angles and lengths just right so that garments would fit their industrious creators perfectly. I taught customers detailed tricks of how to match plaids exactly on the side seams of skirts. I learned to try out new ideas, make mistakes (or sometimes, not) and keep on going.

The skills I learned from expert seamstress colleagues allowed me, many years later, to make Christening outfits for my children from fine Irish linen in the hopes that they would be worn not only by Alex and Jackie, but by future generations as well.

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Lesson: I learned the most when I made mistakes.  (Bonus lesson: high school Geometry has practical uses.)

 

Earning Fun Money during College

For three of my four UNC-Chapel Hill years, I worked as a “TA” (undergrad teacher’s assistant) in the computer lab, helping Freshmen who were struggling with the comp sci weeder course. We’d heard that Michael Jordon was going to be a CS major, and I so wanted to be his tutor. Alas, he changed to geography as a better complement for all that great basketball. (I still own a can of “Carolina Blue Soda” and jeans with blue paint splashes from that magical spring of ’82.) Sunday evenings were busy in the lab but $7.50/hour meant a lot of spending money for Franklin Street outings with friends.

Lesson learned: Don’t expect consistency within a group; each individual has different needs that I need to understand before I can help. 

jordan

Next up: Pascal and Associates, an innovative worker-owned co-op that built IBM PC clones and sold them to university departments. I was hired as a junior programmer for their DOS-based database management system, but when that work was slow, I happily became everyone’s assistant. I stocked the store, soldered circuit boards, made calls to pull in accounts receivables, taught word processing to departmental “secretaries” who’d never laid hands on a computer, and rode the company moped to deliver invoices to UNC.

Lesson: showing interest in others’ work is a form of respect and provides an opportunity to learn from them.

 

Enough of that ancient history. Here’s the post-college career path using truth-based boastful claims as headlines to liven up the story.

 

“Saving lives with a telephone switch”

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Armed with a BS in Math Sciences, I headed to Bell-Northern Research (BNR) to write code for telephone switches which were, at the time, some of the more complex computer systems in wide use.  My first team authored and tested software for “Enhanced 911” calls, providing a caller’s location to emergency services call center agents to speed police and ambulance response times. This capability is laughable now; we’ve come so far. Yet at the time, we found this quite a satisfactory contribution to society.

“Busting drug dealers with software”

In my second project, I became an expert in “blue box fraud” and wrote code to stop its perpetrators. In the mid-1980’s, some telephone switches were still connected using trunk lines that employed specific tones as the way switches could communicate the beginning and end of a call and the need for a receiver to collect the digits of a long-distance number. Armed with instructions, anyone could access these lines, then use a frequency generator to command the far end to place a call to a different number.

Initially, our goal was to help phone companies recoup lost revenue. Then law enforcement agencies realized a pattern: these untraceable calls were often from New York City pay phones to destinations in Bogota, allegedly between drug dealers. I wrote code that manipulated telephone switch hardware resources to detect illegitimate use of the tones, capture digits for reporting to law enforcement, and take down the calls.

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While researching, I acquired a printed copy of the “Youth International Party Line” newsletter from 1972 that described in detail how to perform this fraud. That periodical is now known as the first hacker newsletter. Here’s how this fine organization described itself: “YIPL is an anti-profit organization that… shows you how to fight back at the computers that run our lives.”

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“Creating Siri’s oldest ancestor”

If “YIPL” members were the predecessors of today’s hackers, then “Automated Alternate Billing Service” is an ancestor of Apple’s Siri.

Those of you old enough to remember operators may recall making a collect call when surprise! the voice “on the other end” was an automated one. She asked your name, and as you wondered what was going on, a system recorded it. Your call was routed to the party you dialed, then that nice automated lady conversed with the unsuspecting answering human. “You have a call from [your recorded name played here.] Will you accept the charges?” She was clever, that Siri ancestor, accepting “okay” in addition to “yes” and “no” as answers.

This was in 1987.  I co-authored the application protocol between Nortel’s switch and a unique speech recognition device, wrote much of the call processing software, and collaborated with design teams in Ottawa and Montreal.  Of all of my tech jobs, this is the only one I was ever able to explain clearly to my parents – in this case, by calling my long-distance brother collect. Six years ago, my daughter and I saw a real phone booth and called home collect just for kicks.  The software was still in service, still working!

What a cool project. Apparently the members of our design and test team weren’t the only ones who thought so. One day, CNN showed up with cameras. In a tech update segment, they highlighted this first foray into speech recognition on a public network, explaining it via contrast to the process it replaced. That required an operator, and as the only female on the team, CNN chose me for that supporting actress role.

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We still have the VHS tape of this, which we’ve converted and posted on YouTube for your entertainment – complete with static and missing intro. Want a laugh? Check it out here including my cameo at 1:47. (That’s stock footage at the end; I never had curls like that real operator.)

What I learned: proactive collaboration allows people to understand and help with each others’ challenges, which in turn can make projects more successful.

 

“Finding myself in Tech Marketing”

With a move to the Washington, DC area, I moved from R&D into a business role supporting customer Bell Atlantic (now part of Verizon.)  What a different world.  I was often the only woman – and the youngest and most technical attendee – in our internal meetings about how technology shifts (SS7, ISDN, cable modems, and first-gen DSL) would affect our telco customer and our revenue. Outside of the conference room there was a lot tough work, shared by a fabulous set of colleagues.

This era continued with a return to NC.  At Duke’s Fuqua  business school, my marketing instincts popped up in odd ways.  For a case study assignment on the Sealed Air company, I encased my write-up in a home-made envelope of used tiny pink bubble-wrap. I was teased mercilessly by my classmates, deservedly so, but in that stack of 50 papers on the professor’s desk, which one stood out from the crowd while making a relevant point? After so much technology, it turned out that marketing was “my thing.”

From this point on, I sought and enjoyed roles at the intersection of business strategy, industry-changing technology and customer communications. I’d found my craft, and practiced and developed it within teams at Nortel, VMware, Extreme Networks and Cumulus Networks. As I write this post, I’m so grateful that some of these happily-earned skills are still here for me.

Lesson: sharing knowledge in an understandable way translates to influence — and sometimes even inspiration.

 

There you have it: lessons in resilience from a life of fun, hard work. Mistakes are okay; rely on others and just keep going.

With brain cancer, there is no set path – no treatment – that works consistently for the wide variety of patient circumstances. My healthcare team – and my family – just continues learning from my specific case and from each other.

The approach at the Preston Robert Tisch Brain Tumor Center helps here. Each time there’s a poor result from a treatment path, the care team shares their knowledge and experience. We consider each of the available technologies, medication choices and lifestyle practices. Then together we create the treatment plan that is most promising at that juncture.

As for me, I keep learning. I keep fighting. And I never stop living fully and well.

mandela

– Beth

Super-charging the immune system

Alternative title: “n=1”

Just a week after my last post, I already have something to say. It’s positive and (by my standards) brief, so why not?

boosting

As I start writing this, it is 9am on Friday Oct. 7.  At this moment, n = 0.  For anyone who hasn’t had the joy of studying statistics and probability with an inspiring teacher, that means sample size is 0, referencing something that has not yet been done.

Now, as I return to the keyboard the next morning, n = 1.  Yesterday, for the first time ever, someone with my particular Glioblastoma progression is on a combination of medicines that has not been used before in the US under these specific circumstances.  Who?  Me, of course!

sample-size-of-one

Immunotherapy is the future.  I, my friends, am now part of what we can all hope will turn out to be the long-term answer to cancer. 

Rest assured, the best and brightest have worked through this – not only my most excellent care team and their colleagues at the Preston Robert Tisch Brain Tumor Center at Duke –  but also experts at another major medical center where there’s a trial for similar patients underway. The special combo: (1) Avastin, the miracle drug I’ve been on for three months that halts creation of blood vessels to starve the tumor and limit its growth, with (2) the  Merck immunotherapy med Keytruda (aka pembrolizumab – which thankfully has the handy nick-name of “Pembro.”)

According to my doctors and from Dean’s independent research, Keytruda has already helped many patients with other types of cancer, most notably metastatic melanoma and non-small cell lung cancer. I’ve even met one survivor who had a  type of brain cancer similar to mine for whom this combo worked beautifully. We’re in uncharted territory with my specific situation, thus the n=1, but this step is a great source of hope and optimism.

As for schedule, Avastin is administered via 30-minute IV every other week, and IV Keytruda every three. This creates a six-week cycle with four sets of blood check, clinic, and infusion appointments. As always, I’m grateful to live just 25 minutes from the Duke Cancer Center. I had no allergic reaction during yesterday’s first Keytruda infusion, so thankfully, no pre-med (with accompanying grogginess) is needed.

Immunotherapy explained by an unqualified source

Yet again, ignorance doesn’t stop me from talking about something I find interesting.

Immunotherapy is a hot topic in cancer care, with a lot of excellent information available. What you’ll read here is my lay explanation using sentences shamelessly copied from the cancer.org immunotherapy page and the chemocare.org information about pembrolizumab (Keytruda).

Sometimes the immune system doesn’t see cancer cells as foreign because the cells aren’t different enough from normal cells. Cancer cells themselves can also give off substances that keep the immune system in check. [This is why we use toxic chemotherapy treatments to kill cancer cells.]

To overcome this, researchers have found ways to help the immune system recognize cancer cells and strengthen its response so that it will destroy those cells.

Pembrolizumab is a highly selective humanized monoclonal IgG4 antibody directed against the PD-1 receptor on the cell surface. The drug blocks the PD-1 receptor, preventing binding and activation of PD-L1 and PD-L2. This mechanism causes the activation of T-cell mediated immune responses against tumor cells. [Result: dead cancer cells.]

I may have headaches and/or other side-effects as my immune system kicks into overdrive, but unlike the chemotherapy drugs that I affectionately referred to as “my poison,” this is non-toxic. I expect to feel well. Since we don’t want my immune system distracted, I do have to be extremely careful not to be around viruses this year.

Our “extended family” at Duke is quite excited about this immunotherapy step as well; they pulled out all the stops – even to the point of getting insurance and/or the manufacturer to fully cover the high cost of this med for me. Perhaps I’ll become a case study for Merck’s marketing team, helping them expand use of Keytruda to cure others while returning a fair margin to their shareholders. Oh my; business-Beth still rears her head once in a while.

In keeping with my ongoing theme of the rollercoaster ride, Dean and I did experience one traumatic high-speed dip/turn yesterday: there was a moment at which my treatment was uncertain.  Oh, misery!

I suppose after 16 months of excellence, we shouldn’t be disturbed by a possible bump in the road.  Yet I confess I was broken in that moment. I’m so emotionally open now. Vulnerability can be a lovely thing, in many ways, but it implies a willingness to get hurt, and I’m not good at that.

Of course, my oncology team and the pharmacy experts fixed everything, despite the late Friday afternoon hour with hurricane side-effects on the way. That is the spirit of compassion, advocacy and determination to which we are accustomed at this remarkable institution.

Enough of that. Carmen started my infusion, then led me gently back to my natural state of happiness. We dealt with the stress together and before long, laughter took over – a medicine just as powerful as Merck’s wonder-drug.

pembro-and-me  looking-at-pembro

I’ve always had a strong immune system. One of my favorite bad one-liners shortly after my Glioblastoma diagnosis was this: “I was healthy for 52 years, then developed brain cancer.” Granted, I’ve lived in healthy environments, but I’ve also mucked around in the dirt my whole life (glove-less gardening replaced mud-pie construction long ago), been on lots of flights with sneezing and coughing passengers, and co-raised two children who had frequent classroom exposure to colds and flu. In my last eight years of working, I took only two sick days.

Now we’re taking that strong immune system and super-charging it to attack and kill cancer cells.  GO KEYTRUDA!

immune-1

Thank you to those of you who have asked us about immunotherapy trials, and provided information for us to dig into.  You’re in the know, and I suspect you’re pleased with our news!

I offer gratitude also to all of the people who invented, developed and tested immunotherapy treatments in general and Keytruda in particular, and to all the patients who were willing to take this path before me, paving the way to the future of cancer care.

I’ll end this post with a nugget for Harry Potter fans: some of these cancer meds use an ingredient extracted from the rhizome of the wild mandrake plant. Is Hermione now working for Merck, wearing a lab coat instead of a Hogwarts robe?

prof-sprout-hermione-ron-and-harry-and-a-mandrake

– Beth

A Wednesday Night in Carrboro

carrborostreet

With incalculable help from local friends, I hosted a fund-raising social event on Sept. 28 at a community-oriented restaurant in Carrboro, the cool, funky town adjacent to Chapel Hill. By all accounts, the event was a big success.  150 people mixed and mingled, bid on an array of silent auction items donated by local businesses, and enjoyed Tandem’s food and drinks.  Hugs reigned as old friends reunited.  In our brief program, Duke’s Dr. Matthias Gromeier described progress with his modified poliovirus vaccine for brain cancer. In all, we raised around $13,000 for Angels Among Us, the Duke non-profit that funds research for innovative brain tumor treatments.  Double that thanks to an anonymous donor, and voila:

OVER $25,000 RAISED FOR RESEARCH IN ONE NIGHT. *

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During brief remarks at the event, I wanted to thank each of the people who made this event a success.  There wasn’t time, and given my inexperience holding a wired mic, I don’t think the attendees would have heard me anyway.  Blog post to the rescue: I’d like to thank Kim Agatucci, Anne Baker, Dale Barron, Laura Doherty, Dr. Matthias Gromeier, Eleanor Murray (whose PR efforts led to a page 1 article in the Herald Sun), Ellen Stainback, Denise Todloski and Laura Zimmerman Whayne for making this possible.What an honor to count these wonderful people among my friends! I owe gratitude, as always, to Dean, Alex and Jackie for their support as I took time to prepare for this when I might otherwise have cooked. 😉

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Next Up: (More) Writing

With a project of this size completed, any rational person would take a day or two off, but I’d booked a writing class for the next morning.

A couple of months ago, I decided to write a memoir about the roller coaster ride that is my family’s glioblastoma journey. The idea is to combine (1) the chronology, (2) serious contemplations (which have yet to appear in this light-hearted blog) and (3) experiences from my life – and stories from my parents – that shaped me into someone who can face adversity with grace.

Two days later, a UNC email advertised the three-session “Write Your Life” seminar.  A sign!  I registered. During brief introductions by the professor-author and 18 students, I realized this could be a jackpot.  Here was an interesting, diverse group with one thing in common: desire to capture a life-changing story “on paper.”

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The first assignment: “In the next 15 minutes, hand-write your life story in 3 pages.”

I’d never done such a thing.  This blog is the closest I’ve come – and it’s just a chronicle of 16 months from a 53-year story.  So, pen in hand and grateful for the additional space afforded by college-ruled paper, I set off to tell my tale. I’d need more than 3 pages and 10 minutes for all the wonderful people and intriguing places I’ve known, but here, my friends, is that first cut at my life story:

I’m a teachers’ kid, born in 1963 in the university town of Greenville, NC.  Life was simple and good.  My two older brothers and I climbed trees, rode bikes, and played in the forbidden woods behind the neighborhood park.  Our family ate dinner together every night at six. Teen angst arrived as it always does, and in the era of what we now call “classic rock,” that angst was balanced with music, parties and cruising around town in friends’ used cars listening to 8-tracks.

High school was easy – too easy – except for math.  Mrs. Gantt taught a privileged few more than we learned from all the other teachers combined. Then it was off to UNC-Chapel Hill to study computer science. After late-night studies in Wilson Library’s Reading Room, I’d meet my life-loving friends at our usual haunts, “Trolls” and “He’s not Here.” 

The last semester rolled around. Most of my fellow comp sci majors sought jobs at IBM but I couldn’t conform, didn’t want to. Instead, I joined the R&D subsidiary of a major tech firm (later called “Nortel”) and started writing code for telephone switches. The job was fun! Hard work, challenging, and with smart people. On Fridays we played pool, a skill that’s occasionally been useful in the years since.  Girls around here aren’t expected to play well, but I blend knowledge of angles and kinetics with those years of practice.

Along the way, I married my high school sweetheart, Chris. Fun, some travel, a move to Washington DC, but the wrong choice. He surprised me one day when I returned from a business trip: “I think I should move out.” Well how about that. Sometimes break-ups really can be a complete surprise, at least to an “incurable optimist.” Just before this, my grandfather’s last words were to me; he said “God bless you.”  As it turned out, the hardship of getting dumped was indeed a blessing. 

Good (great) fortune prevailed: within months, Dean arrived on my scene, a lovely story that would require far more than 10 pages and 3 minutes.  We’ve been together ever since, through grad school, a move to NC, and lots of dancing and vacations. This time I got it right! We married at Duke Chapel during an ice storm in the family crypt alcove that we affectionately refer to as “Dead Dukes Chapel.” 20 years, five pets, and two great kids later, he’s sticking with me through an unexpected and unwelcome journey called brain cancer. That journey surprisingly comes with its own beauty as for the first time in this charmed life, I wholly experience the warm powers of community and the human spirit.

With that, the teacher asked us to put pens down.  That’s fine; you know the rest already if you’ve read this blog before.

Beth

* matching funds explanation: an anonymous donor is encouraging all Angels Among Us “teams” to raise more this year than last. Their year ends with the big annual Angels run/walk event at Duke.  Since “Beth’s Backers” will easily raise more than last year’s $10K in advance of the April 29, 2017 race, the full amount from last week’s event gets doubled.  Every $100 in auction wins and donations equated to $200 towards research.

If you want to check up on Beth’s Backers’ second year, we’re under “Teams” at www.angelsamongus.org. There is a delay in having funds show up so the big number I boasted is not yet on the website. 🙂 Note that”members” are the people who’ve signed up for the next race; we haven’t promoted this yet for 2017 so as of this writing it’s just my family. I f you’d like to join us (or join us again), please do! 

Pear of Angels, Please

pears

Nope, that’s not a typo. That’s pear as in the fruit that is – when you catch it just right – one of the best flavors on the planet.  More about that in a moment.

Health update: not much to report, which is good. I’m still basking in the glow of the last MRI. I feel quite well. I enjoy walking but outings aren’t as far, fast, or frequent. That’s fine; I’m happy to be out and about even if my former scurry is now a relaxed stroll. I manage physical fatigue. Sitting instead of standing sometimes takes a bit of planning and creativity; on this point, I’d like to thank the person who thought to put a bench in the check-out area of our neighborhood’s grocery store.

The wonder drug Avastin is starving my tumor and worth any side-effects it wants to contribute to the story, which now includes joint pain akin to mild arthritis. Tylenol to the rescue! I sleep with even more pillows than ever, propping shoulders and knees to keep right angles right. Dean and the dog compete for what’s left of the bed. I’m not giving up the dog, so we’re buying a bigger bed to provide a stage large enough for all my props.

Dark Side of the Moon banner

I’ll see you on the dark side of the moon

That’s a brain damage reference for the few of you who aren’t Pink Floyd fans. Around a year ago, the radiation that stalled the spread of my Glioblastoma brain tumor left behind cognitive damage. Multi-tasking? No can do, and wow does that take some learning and adjustment. Scattered-thinking? Oh, now THAT I can do. Complex conversations that I used to find so engaging? Nah, gotta keep it linear now, though I’ve learned to enjoy just sitting back and witnessing the wanderings of others from across the dining table. As it turns out, interpersonal dynamics are far more intriguing when the words all fade into a blur. Talking? Yep, still got that – though my comments are unfiltered, and too often, too lengthy.

As my family can attest, I get frustrated when new limitations come to light.  The cycle: (1) I do something new and stupid; (2) realization hits that it’s not my normal carelessness nor even an occasion I can blame on middle age; (3) I’m angry that cancer has taken another little bit of my self [apologies, Ms. Joplin, for the corrupted lyric]; and finally (4) I breathe deeply, forgive myself, and forge ahead.

But sometimes, it’s as if a miracle occurs.  Sometimes it’s the other way around: I realize I still have something that I thought I’d lost. A year ago, my neuropsychologist reassured me “your intellect is still there; you just can’t get at it.” She helped me understand that though I get lost somewhere in there, I’m still me. At the time, that realization was a breakthrough. Now it’s a no-brainer.  So to speak.

There are two special examples I’d like to share.

John F photo Fuqua speech banner

On Monday, I gave a keynote speech at Duke’s Fuqua School of Business. The auditorium was filled with healthcare-industry MBA students.

I was the voice of the patient, describing my brain cancer journey from the perspective of healthcare as a supply chain, pointing out gratitude for excellent care at Duke – and the vast opportunity for these students, in their interdisciplinary education at Fuqua and in their careers after graduation, to make decisions that better connect the pieces of the healthcare chain, reducing trauma and stress for patients which I believe improves health outcomes.

I declined the initial offer of joining a panel, as I know I can’t track that kind of discussion, and if fatigue hit I’d have to leave prematurely, but a linear presentation format was perfect. I had a blast! And from feedback, it appears some attendees were inspired to think differently about what I called the “Patient Perspective” (pun intended).

For anyone who’s interested and has time (50 minutes), here is Fuqua’s video of the presentation, shared with their permission.

Tandem cropped

“Give Back” to Angels Among Us – Starting Today

Please bear with me as this second story unfolds; I promise to reveal the miracle in 300 words or less. Back in June, at lunch with a friend at Tandem Restaurant in Carrboro, I noticed our waiter’s T-shirt stating “In TANDEM we fight” with a pink breast cancer awareness ribbon. “What’s that?” I asked. “Each month we support a community partner. This month it’s UNC Lineberger breast cancer research.” Immediately, I want in. I want to be a part of this community outreach. I meet Emma Dunbar, the manager, and tell her about the mission of Angels Among Us: providing early-stage funding for innovative brain cancer treatments at Duke. She wants in.

Fast forward: starting today, Angels Among Us is the September Community Partner at this modern American restaurant in the historic, charming Carr Mill.

  • On Sept. 13, 10% of lunch and dinner proceeds go to Angels Among Us.
  • All month, there’s an amazing cocktail – invented before my very eyes. Yes, this is where my blog post title originated. Mix pear puree, rich dark rum, Cointreau, a splash of this, a splash of that, strain, add a twist of lemon rind and wa-la! behold the “Pear of Angels.” $5 from each one sold goes right to Angels Among Us — all month.
  • Finally, with incalculable assistance from talented friends, I’m hosting a fund-raising event at Tandem Restaurant Carr Mill on Sept. 28. Our silent auction includes NC and Caribbean resort stays, Playmaker’s Repertoire Company season tickets, camping gear for a weekend, tutoring services, and much more.
    • The Duke researcher who invented the modified poliovirus vaccine, Dr. Matthias Gromeier, will be our speaker. You can check out the 3-minute version of his May appearance on CBS 60-minutes here.
    • At long last, the miracle revealed: as I’ve worked on this event, with all the conversations that includes, I realized that my story – my brain tumor journey – has the power to inspire. There’s a lot I can’t do anymore. But this? This I can do.

Local friends, please join us! Book your table by calling Tandem at 919-240-7937. For any authors out there, this is also a nice place to write. That’s where this blog post and my last one originated.

Tandem Sept 28 card front

 

So this is the “new me” – narrowly-focused to fit my limitations, but driven to make a positive difference. This is the beginning of the “give-back” stage of my life.

One last comment on miracles

Einstein

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.”

― Albert Einstein

I’d argue that’s one of this physicist’s smartest comments.  And that’s really saying something.

Summertime and the Livin’ is Easy

cotton is high

News Flash: Today’s MRI Looks Great!

The new regimen of immunotherapy drug Avastin with chemo med Lomustine (CCNU) is working. Joy! Relief!

Today’s MRI shows that compared to five weeks ago, swelling is significantly reduced and all three tumor sites appear to be shrinking. There’s more work to be done but this is amazing progress.  

No one MRI slice-photo shows all three lesions but here’s a dramatic example: the left image shows my parietal lobe primary tumor site (surgery site) today while the image on the right is from June 28. (Because of the angle of the MRI photo shoot, the right side of my brain – the troublemaker lobes- show up on the left.) White areas highlight tumor and swelling, the bad stuff. That’s disappearing on the new meds, and the texture of right-side brain tissue is starting to look like the healthy left side.  

MRI example AUG 3 2016 (1).jpg

Now and Then (today on the left; June 28 on the right)

As we say here in the South, “Yee Ha!”

Leading up to today’s confirmation of improved health, summer has been moving along sweetly with a lot of good times.

“Smile and grin at the change all around”

Thanks, Duke NP Catherine, for a succinct description of this stage in the journey: “You’re getting to know the new you.” Yes! That’s it. I am learning to understand, accept – and embrace – “a new me.” So much has changed: the ebb and flow of stamina, how I look, what I can accomplish. And yet in most ways, the new boss is the same as the old boss. I’m so fortunate that the frontal lobe visitor hasn’t affected my personality… or my taste in music.  

Who by Beth 2 (1)

(Roger and Pete are still at it, 50 years on, and yes, I took this picture.)

Waning Stamina and the Spanish Cure

Chemo causes fatigue. It’s cumulative, but fluctuates as my blood is attacked and then recovers during the six-week Lomustine cycle. I hear of cancer patient athletes running marathons and am equal parts impressed and baffled. Though post-coffee I may be raring to go in the mornings, by evening I might need rest after a flight of stairs. This is quite the challenge for a life-long busy-body! 

Our wonderful vacation in Barcelona and the lovely Spanish coastal town of Calella de Palafrugell helped tremendously. I finally learned to accept reduced stamina, my family understanding completely that I shouldn’t try to keep up all the time – even as I encouraged their non-stop adventures.

banner of four

In the mornings, we’d tour historical sites, check out beaches, walk along cliffside paths. Thanks to accommodations like the elevator at Basilica de Sagrada Familia, I kept up reasonably well with my athletic husband and teens. We checked out Gaudi’s buildings and Picasso’s drawings, shared excellent meals, mastered a new card game. 

I learned to slow down when needed. Faced with heat, direct sun or a hill, I’d detect a decline, adjust, then rest. ¿Tiempo para una siesta? ¡Sí! The kids saw first hand that I was slow but having a wonderful time.

While the others jumped off cliffs into the Mediterranean, I perched above with camera, snapping away and laughing at their antics. When they snorkeled in the cool water, I sat in the shade by the pool and read novels from the hotel book swap. Sailing lesson? Great!  I’ll be in the beachside cafe right over there, watching the boat and savoring sangria. 

Version 2

A pleasant surprise: my weight was unchanged after vacation despite cheese plates, gelato cones, and countless tapas featuring Spain’s renowned ham. Turns out the Lomustine chemo raises my resting metabolic rate as it does its work, so I was burning through calories while people-watching in breezy cafes. 

A Different Look: The Battle of the Brows

Mick angry eyebrows

The SYM0004 clinical trial, our battle tactic for just two months, documents unusual hair growth as a possible side effect. Great! My intent: the right side of my scalp bared by radio-surgery would fill in, and soon my short hair style would look good on both sides. Alas, no such luck. Instead, my eyebrows grew above, below and amongst the pre-existing line. Easy enough to tweeze, no big deal. Then came Lomustine, which caused the old brows to fall out. Now I’m grateful for the spiky souvenir set left behind by SYM004. Eye lashes are on their way out now, saving me a minute each morning since there’s nowhere to put mascara. And that bald spot? As Mick related, “you can’t always get what you want.” It’s thinning again.

Don’t fret about the juxtaposition of that last comment and the following image.  I have less hair than Jagger but way more than my favorite Jedi.

 

yoda

The final part of embracing “the new me” is to accept what I can no longer do, and to embrace and thrive on what’s still mine. On this, Yoda’s much-quoted advice serves me well.  If I can’t do something, fine. I’m learning not to fight it. There is so much I *can* accomplish and enjoy.

And that, my friends, is why the livin’ is easy.

– Beth