Our Brain Tumor Dream Team

Our meeting with Dr. Black and his staff left us with one very strong impression. Every single person working in the neurological institute was born to be there. It's their calling. From the sign-in attendant to the insurance payment woman to the nurse to Dr. Black himself, these people are there to save lives. And while doing so, they want to make you feel safe, comfortable, happy and know that they are going to do everything they can to make you better again. It is unbelievably inspiring. The few hours spent in their offices has really made me consider changing my career path.

Before getting laid-off last month, I worked in advertising for almost 10 years. I loved almost every moment of it, but I can't say that my or my agency's work was changing lives. Sure, there were some fantastic research projects, amazing colleagues and intriguing creative work, but at the end of the day we were selling __________ [fill in the blank]. Developing advertising, and strategic planning specifically (my specialty), is incredibly interesting and hard work, but our measure of success was always making sure people were a) aware of a brand, b) had a positive perception of the brand, and c) ultimately, bought the brand's product or service. While my many clients over the years might disagree, I'd say 99% of the CPG or luxury automotive products that we advertised didn't truly change anyone's life.

Conversely, success for Dr. Black's team means saving the lives of people with brain tumors. And in our case, we're working to save Bryan's life. For perspective, let me share just how rare it is to find a truly specialized brain tumor specialist. The following excerpt is from a Time Magazine article written on Dr. Black and his team.

"Of the 5,000 or so neurosurgeons working in the U.S. today, 4,900 concentrate mostly on the spine and deal on average with only five or six brain tumors a year. Of the 100 who routinely work inside the skull, perhaps 50 specialize in blood-vessel repairs rather than tumors. Only the remaining 50 can be considered brain-tumor specialists, averaging 100 surgeries annually. Along with a handful of others, Black averages more like 250 such operations a year. His referrals come not only from the U.S. but from Europe, the Middle East, South America, Japan and Australia as well. A tumor that is inoperable for the average neurosurgeon is not necessarily inoperable for Black."

Only 50 brain tumor specialists in the country, and we were meeting with the best one. Immediately after walking inside Black's office, we were whisked away into an exam room. We barely had time to breathe before Black walked in, bringing with him his sense of zen and purpose. Whatever news we were about to get, we felt much more comfortable getting it here than anywhere else.

Black asked us if we had been shown, in detail, Bryan's MRI scan. As a matter of fact, no, we had not. It might be nice to actually see the in-depth, 100+ scans of Bryan's brain before being given a prognosis. Black took us into their imaging room, where Bryan's MRI was already on the screen. He sat down and took us through the entire MRI scan. He pinpointed and explained to us the different parts of the brain, which look incredibly different than they do in a textbook or a brain cancer pamphlet.

Sure enough, Bryan's tumor was right in the middle of the brain stem, sitting there like a little egg. Compared to the rest of his brain, it was small. It LOOKED harmless enough. But no matter how harmless it looked, it was the enemy. It was hurting Bryan and therefore, it had to go. While a small part of me was (reasonably?) afraid of it – this little white poofball of a tumor on an MRI scan – another, much more powerful part of me was commited to absolutely killing it. There is no way in hell I would let this thing control the fate of my soon-to-be husband. He is the one of the best sons, friends and overall human beings anyone has ever met. If you've met Bryan, you know this is an understatement.

Dr. Black leads us back into the exam room and tells us that he is 99% sure that this is a low-grade glioma. It is a classic case; one that looks as though it has been there for several, if not many, years. However, because of it's location in the brain stem/pons (which control all the motor functions in the body), it is inoperable. However, Dr. Black's explanation is not a scary one. He says "you do not want to operate on it" rather than, "you can't operate on it." Even a biopsy carries of a 1-3% chance of bleeding or harm, which could lead to paralysis or worse. His respect for the brain and the patient is such that rather than put a patient at any risk, no matter how small, he immediately explains other options.

We have two options left: chemotherapy and radiation. He says while "no one wants to have a brain tumor, this is the kind to have. It's bad, but I've seen way, way worse." It was the most optimistic comment we had gotten, so we took it and ran with it.

Black told us that since surgery was not an option, we would be treated by his neuro oncology and radiation team. We were personally escorted downstairs to Dr. Black's neuro oncology (brain cancer) portion of the Institute. We met with his top specialist who had cleared his calendar to meet with us. He spent a whopping three hours answering every question we asked, but more importantly, brought up the questions we hadn't yet thought of asking. He took us through the MRI again (as well as full-body PET-CT scan) and confirmed that the cancer was limited to Bryan's brain. While at the end of the day we obviously wish we didn't have to be in the Neuro Insitute at all, we loved our new doctor immediately.

At this point we had gotten opinions from three top hospitals in L.A. and Bryan's parents were working on getting an opinion from UCSF. Our bases were covered, and Bryan was feeling comfortable with the attention, care and most importantly, expertise of the medical dream team we found at Cedars. We were ready to get started with treatment. We had done enough talking. It was time for action.

Our neuro oncologist wrote a perscription of oral chemo and made a call to the radiation oncology unit. We were being fast-tracked to the unit and were given an appointment the next morning. Since Bryan's cancer is in his brain, radiation is given through a custom mask. Typically it takes 1-2 weeks to be set up and fitted for the mask. Because our doctor called in a favor, we were set-up and fitted in 2 hours. I can't thank this team and our contacts enough.

By the end of the next day, we were ready to go. It had been exactly one week since Dr. Doom's diagnosis and we were ready to start chemo and radiation. Talk about a whirlwind, emotional, exhausting and humbling SEVEN days. But we were ready to kick some tumor ass. Thankfully, by the grace of God or whatever else is out there, we have the right medical team to do it.