When my husband and I learned our health insurance would be changing from Kaiser (HMO) to a PPO (plan to remain anonymous), we had just one concern: How would we manage my care?

We had three priorities:

  1. Have access to top-notch neuro-oncologists at health systems connected to advanced treatments and clinical trials
  2. Have affordable payments for MRI scans, which are the only accurate screening tool for brain tumors
  3. To not go bankrupt in case my tumor decides to grow and I end up back in active treatment (which may include another craniotomy, biopsy, radiation, chemotherapy, or clinical trial)

Choosing a neuro-oncologist

My first step in picking a new neuro-oncologist was to ask my Kaiser neuro-oncologist where I should go for care. I live in Sacramento, CA, so my local options included the UC Davis Health System and Sutter Health, which both have neuro-oncology programs. (I could have also considered Dignity Health, but they do not specialize in neuro-oncology.) With the PPO plan, I could also choose from UCSF and Stanford, which are both known for having world class neuro-oncology teams.

My Kaiser doctor immediately said I should go to University of California, San Francisco (UCSF) because of their top-rated neuro-oncology and neurosurgery team.

“The drive is a pain the butt,” he said, “But should you have any tumor growth, you will already be part of a great neuro-oncology team.”

I then asked my doctor, “Out of all of the neuro-oncologists at UCSF, who would be the best doctor for me?” And by that, I meant, “Which doctor would match my personality and be willing to entertain all of my questions and not think I am crazy for being a Super Patient?”

He gave me a name: Dr. C.

But I didn’t stop there. I emailed my former neuro-oncologist at Kaiser in Redwood City. He replied with the same recommendation: Dr. C at UCSF.

A week later I was on the phone with my friend (and occasional mentor) Dr. Michael Fratkin who practices palliative care in Northern California. I was telling Michael about how I was in the process of choosing a new neuro-oncologist.

Without having asked for his opinion (not that I minded!), Michael immediately offered, “You have to see Dr. C at UCSF.”

I could see a pattern emerging.

Setting up my first appointment

In order to see Dr. C, I had to request copies of all of my medical records and scans from Kaiser. To do this I:

  • Made a number of phone calls
  • Filled out a variety of forms
  • Followed up with both UCSF and Kaiser to make sure the records were transferred
  • Found out that Kaiser never sent anything to UCSF
  • Followed up with Kaiser again
  • Completed the paperwork a second time
  • Called everyone again to make sure the transfer was happening
  • Tweeted out of frustration
  • Was contacted by both UCSF and Kaiser customer service via Twitter
  • Had a nice phone call with Kaiser customer service
  • Was reassured that everything was happening, and then
  • Waited for confirmation from UCSF that they received my medical record
  • (And also wondered if I got quick service that second time around because Kaiser noticed I had over 2,500 Twitter followers)

Throughout this process I felt bad for anyone who has ever transferred health systems when they were actually facing an immediate health crisis. I wasn’t in treatment; I was just setting up a new relationship. But what if I had to go through that whole rigmarole after having just learned about my tumor? A person in that state of mind (patient or caregiver) shouldn’t have to deal with that level of craziness.

(Insert separate rant here about why we, the patients, should have full control of our complete medical record–to be written one day in the future, though I have many friends who have already written on this topic.)

After my record was transferred, a scheduler contacted me. He said he was setting up my first appointment, and he had me scheduled for two weeks later with Dr. T.

“Dr. T?” I questioned. “I specifically asked if I could be seen by Dr. C.”

The scheduler responded with an “ooooohkaaaay,” and transferred me to Dr. C’s scheduler, who, long story short, got me set up for an appointment with Dr. C a few months later.

Travel is a pain in the ass

Fast forward to a few months later and it’s time to see Dr. C.

The distance between Sacramento and San Francisco is not really that far (87 miles). However, the traffic between the two cities, specifically during peak commute hours, is atrocious. Also, there are a number of tolls and bridges along the way, and San Francisco is not known for having many parking options. It’s the worst. However, what a small price to pay for great care.

I had to keep reminding myself I was investing in my future!

My MRI was scheduled for 9 a.m., but I was asked to arrive at least a half hour early for check-in. According to my calculations: a half hour early + travel + commute traffic + parking = leave Sacramento around 6 a.m. I posted to Facebook asking friends who are frequent commuters about when I should leave Sacramento. The resounding answer was: 5 a.m.

Brett and I both responded with an, “Awww, hell no.”

Original Wonder Woman says, "Aw HELL no."

Instead, we reached out to a number of friends and were offered a chance to stay the night with our friend Erika in Oakland. God bless Erika.

Travel logistics to UCSF

We left Sacramento the night before my appointment and drove an hour and a half to get to Oakland. The next day, Erika dropped us off at the Oakland BART station around 7 a.m. and we traveled to San Francisco. We got off BART and took a Lyft the rest of the way to UCSF.

We arrived to the MRI appointment at 8:30 a.m. I was seen right away. I completed the paperwork, pointed out a safety error in said paperwork, waited, and had the scan.

After the MRI, I was scheduled for my appointment to see Dr. C at noon. I was worried in advance that she’d be hungry.

We checked into the UCSF Neuro-Surgery/Oncology office, which has a way better view of the city than any Kaiser I have been to. Not that that matters.

We were a bit early, so I scoured the waiting area for a good magazine, but none were available. However, I did find a copy of the December/January 2017 issue of Neurology Now, which features a big story about OpenNotes and lots of pictures of me. I debated whether to bring the magazine into the visit with Dr. C, but decided she had more important things to cover than hear my humble brag about the magazines I have been in.

OpenNotes featured in Neurology Now.

Noon passes. A staff person tells us Dr. C is running behind. Then it is one o’clock. Brett is restless, but I am not. I think about the appointment Dr. C is in that is making her run behind. I think about the family that is in the room with her. If she is running late, that means someone is getting bad news, and they, as a team, must be discussing next steps. Are they talking about treatment? More surgery? Hospice? Is the family crying? How must Dr. C feel? Has she even had lunch yet?

And here’s me. Totally healthy (other than the malignant brain tumor), and I am totally “fine.” I tried to explain all this to Brett so he didn’t have attitude about the appointment running behind. He harrumphed this, which I don’t even think is a verb. (Only later did I realize Brett’s attitude had more to do with anxiety about me potentially having a bad scan.)

Brett is Batman in this GIF.

Meeting Dr. C

Then we were called into Dr. C’s office. She was great. Young. Professional. We went through my complete medical history. She asked me lots of questions. I gave her long narratives in response as my version of answering questions. She listened to every word and never cut me off. I kept waiting for her face to mimic my own, which was full of smiles—but I have dimples so my face always looks like it is smiling.

Because I had put so much thought into finding a doctor, and making sure I got to see Dr. C, I had built her up in my mind. When I asked my Kaiser doctors (and Michael) about who would be a good doctor for me, I assumed they were picking a doctor who was just like me. This was not the case.

Dr. C was awesome, but her personality was not the same as my own. And now that I think back on it, it is better this way. If I had a doctor just like me we’d never get any work done! We would bust out Post-it notes and Sharpies and start using design-thinking to come up with a better strategy for magazines in waiting rooms–probably not the best use of her time.

Meeting Dr. C reminds me of when I was new to this whole neuro-oncology world back in 2008 and 2009. My personality flaws include wanting people to like me. In 2008, I tried so hard to get my neuro-surgeon to laugh but it never worked. Back then, my Uncle Bob had to keep reminding me that the doctor’s job is make sure I receive good care, not to be my best friend. This advice came flooding back when meeting Dr. C.

“The doctor’s job is make sure I receive good care, not to be my best friend.”

Near the end of the appointment I told Dr. C about how I ended up choosing her to be my doctor. At the mention of the names of my other doctors (and Michael, who she has also worked with) a smile spread across her face. She was flattered by her colleagues, and appreciated my perseverance to find the right partner in my care.

She wasn’t me; she was the right complement for me.

My brain as of May 2017.
My brain as of May 2017.

Epilogue

Two weeks after this appointment I had brunch with two friends also living with brain cancer: Deborah and Katie. We were eating in honor of our friend Erin, who recently passed from glioblastoma. Erin had lived nearly eight years with GBM! A true unicorn. (Recommended reading: Blog post by Erin’s mom.)

Of course, the three of us discussed our current health statuses. I mentioned I recently switched to UCSF. I knew Deborah and Katie were also UCSF patients, but I was surprised to learn all three of us all had the same doctor: Dr. C. This was such an exciting revelation for all of us! Both Katie and Deborah gushed about how much they like her, and for completely different reasons.

At the end of our brunch I suggested we all take a photo together and share it with Dr. C (and on social media, of course). Dr. C wrote, back, “That’s lovely! Thank you for sharing. :)”

Meanwhile, UCSF marketing was pretty stoked on the photo and shared it via Twitter and Facebook, and the three of us celebrated our 15 minutes of Internet fame.