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.
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.
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.
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.