“YOUR BRAIN IMAGING SHOWS A GOLF-BALL-SIZED TUMOR in your pituitary gland, encroaching on your right optic nerve.” I was 52 when I suddenly lost my right lateral vision. Three brain surgeries later, most of the benign tumor was out. Today I want to share five lessons I learned from having a brain tumor.
It was supposed to be glorious. My son Ty had just gotten into Stanford, my daughter was nationally ascendant in saber fencing, and another daughter was studying in Kyoto, Japan.
I didn’t expect to have a tumor. But few do, right?
“This is the story of a man named Eddie and it starts at the end, with Eddie dying in the sun. It may seem strange to start a story with an ending, but all endings are also beginnings. We just don’t know it at the time.”
The neurosurgeon told me he would not know if the tumor was benign or malignant until we got the final pathology results.
Into the Abyss
When I awakened from the first surgery (inserting cutting tools through my nose), the neurosurgeon indicated that the tumor was too big to remove.
We would go back the next week, using the same surgical approach.
Again, incomplete resection was needed. Fortunately, I am quite cool when it comes to what are stressful events for others.
Finally, I had surgery by opening my skull (an open craniotomy). With better visualization, the doctor got the vast majority of the benign (not cancer) tumor out. We’ll save the rest of the tumor story for another day, perhaps after I get radiation therapy someday.
Here are five takeaway lessons for me.
1. I Chose My Care Team Carefully
Let’s look at how I chose my neurosurgeon.
- Primary care. I checked in with my primary doctor. Often, a primary care clinician is familiar with an expert best suited to handle the specifics of one’s case.
- Insurance. I determined which doctors were “in-network.” Most health plans have negotiated discounted rates in the USA with certain doctors and healthcare centers in your area. You pay less to visit these doctors and facilities. For insurance purposes, we call them “in-network.” By selecting an “in-network” doctor, I avoided a surprise “out-of-network” charge.
- Board certification.
- Logistics. While I was willing to go anywhere in the country, if necessary, to receive optimal treatment, I also knew it would be preferable to be close to home. I wanted to minimize the disruption to my loved ones and still have the New England trait of maximizing value.
- Interview. I had an extensive consultation with my neurosurgeon (and got input from a second one).
2. Ask Questions. Keep Asking.
I am a radiation oncologist; I help people with benign (not cancer) and malignant (cancer) tumors.
I pride myself on being able to sort through clinical literature, determine levels of evidence, and guide patients to make decisions that fit their goals.
Here are some of the questions that I asked:
- What kind of tumor do I have? Fortunately, it was benign, although utterly bizarre, and occurs in only one in 2,000 cases.
- What treatment do you recommend? Why?
- How many patients have you treated with this condition? In my case, the neurosurgeon was a national leader who had recently lectured at Harvard on the surgical approach.
- What side effects are the most common? Will I lose my smell? Vision? What about appearance, including surgical defects and hair loss?
- What follow-up do you recommend to know if the surgery worked? It worked relatively well; I had a near-complete resection. I will likely need a five-week course of external beam radiation therapy.
- I know I need surgery. Am I a candidate for minimally invasive surgery? Through my nose? Or eyebrow? Or do you need to crack my skull open and have a better view of the tumor?
- Am I a candidate for any clinical trials?
3. I Put Myself at a Distance
Is it possible to study a bird so closely, to observe and catalog its peculiarities in such minute detail that it becomes invisible? Is it possible that we lose sight of its poetry while fastidiously calibrating the span of its wings or the length of its tarsus? That is our pedestrian descriptions of a marbled or vermiculated plumage; we forfeit a glimpse of living canvases, cascades of carefully toned browns and golds that would shame Kandinsky, misty explosions of color to rival Monet? I believe that we do. In approaching our subject with the sensibilities of statisticians and dissections, we distance ourselves increasingly from the marvelous and spell-binding planet of the imagination whose gravity drew us to our studies in the first place.
— “Blood from the shoulder of Pallas.” Watchmen #7.
I was named a top doctor in Seattle area magazines this week, Seattle Magazine and Seattle Met magazine. This is not meant to be a boast. Indeed, few folks care about this naming. Correction, my mother in Connecticut cares and joyfully shares the news with friends and family.
But one of the most valuable things I have learned from helping physicians who have been my patients is that they appreciate it most when I assume they know little about my sub-specialty and management.
I followed this line of thinking. Once I did some basic research, I stopped and turned it over to the objective expert.
4. Be Open to New Treatments. But It’s Okay To Say No.
I asked about clinical trials. Clinical trials are research studies testing new ways to manage medical conditions. I wanted to hear more if my involvement would help improve management and outcomes for future patients. Alas, I had no appropriate clinical trial opportunities.
5. Be Open to Help From Others.
Being open to receiving aid from others is difficult for me. I don’t like being a burden to others.
For me, it is a joy to help others. Doing so is good for my physical and psychological well-being. If you are naturally inclined to offer kindness, please reach out to someone in need; the satisfaction you derive from the act is wonderful (and a bit addictive).
The act of giving activates pleasure-related brain centers and causes a release of serotonin, oxytocin, and dopamine. These three hormones contribute to the experience of pleasure.
A new study found that the brain’s pleasure centers became activated as people decided to donate part of a new stash of…
Back to me. I have trouble accepting help. But in this case, my wife Kayoko was taking care of my youngest in our second home. They had moved there to train with US Olympic Women’s Saber coach and legend Ed Korfanty.
Enter my lovely nurse Melissa, who spirited me to the hospital for my neurosurgical procedure. And a shout out to my dietician colleague Theresa, who provided nourishment to help me heal from surgery.
Three surgeries and a near-death experience (the technician reversed the surgical GPS), but that story is for another day. A pituitary tumor is not a “brain tumor,” but mine was certainly not what one thinks of as a usual pituitary tumor. Next up? Radiation therapy (but not yet).