Part 2: Be Your Own Advocate

This is Part 2 of Be Your Own Advocate community story. To read Part 1, click here.

Unable to do my job anymore

I attended a Division Meeting and was, I’m sure, the most verbally negative person in the room during a presentation by the head of marketing. The Division VP witnessed it and told my boss that I needed to take a medical leave. The next afternoon, the boss went over what was the most humiliating review of my life. But as she detailed all the things I had done poorly, I was agreeing with her. I sucked at my job. I was unable to give it my full attention. Things were cloudy. And when you work with the government on immigration matters for international students, you cannot afford to be foggy.

Requesting medical leave from my oncologist

That afternoon I met with my oncologist, intent on getting the paperwork signed for a medical leave. When she asked how long I thought I wanted to take off and I answered a year, she looked up in horror. Yeah, doc, it is that bad. I’ve been complaining for a year and no one has been listening. If I’d been bleeding, would you have cared? If some blood test showed elevated fatigue, would I have gotten attention? Yes, I am not that much of a complainer. Not whining about it was another symptom, it turns out! I handle pain very well and I looked at my recovery as something that had to be endured. My only complaint was being tired. And no one seemed to hear me.

Time for additional testing

At that point, the doctor decided to have me see a neurologist, saying “you’ve been complaining about being tired long enough.” Ever compliant, I went to see that doc immediately. He asked what I thought the problem was and I said, “Chemo brain.” Talk about flat affect...he just wrote some notes and said “My office will schedule an MRI. And come back in a month.” Three weeks later I called that doc’s office to ask if they had scheduled that MRI. Realizing their error, they scrambled to get me in the next day. I went to that test thinking “well, it’s just another test.” When the nurse came in and asked if they could put a dye in because the radiologist wanted a higher contrast, I remember thinking, “Sure, I’m here, why not.” I now recall that the smiling, friendly nurse who’d first greeted me was suddenly quiet and concerned, teary-eyed. It didn’t register then.

Good news and bad news: a huge tumor

After the test, I was told to wait for my CD. The radiologist called for me to come back in the office and said the old, “I’ve got good news and bad news.” The bad news was that I had a tumor. A huge tumor. The good news was that it was not IN my brain, but it was sitting on the frontal lobe. He told me to go directly to the hospital, that I would definitely need emergency surgery. He’d already called the neurologist who’d alerted the hospital. I left him, went to my car, and called my husband, directing him to meet me at home. Once he got home and after I called my boss and my oncologist to tell them that I was relieved to know what was causing all my fatigue (can you imagine not feeling fearful that I had a brain tumor, just relieved knowing that there was something making me feel so terrible?), we went to the hospital.

Cognitive difficulties

Was I scared? No. Weird, huh? Later I would find out that the tumor’s placement challenged cognitive function, caused my imbalance and shoe shuffling, made me paranoid while driving, and prohibited me from deciding something as ordinary as an agenda. My neurologist asked, “How could you even walk across a room?” Even later, once the surgery was over, people would tell me stories about how nonchalant I was about everything in life, including – once they found my tumor - the idea that my head was about to be cut open, the skull partially removed, and a blob the size of a golf ball excised. Flat affect was my demeanor.

Testing the tumor for cancer

All the doctors said that they would test the tumor during surgery to see if it was cancer. Later, they each told me that they were certain they would find cancer. And also, they told me that they did not really believe in chemo brain. One said that it was a cancer victim’s term for feeling bad. When I asked my oncologist what she would do if they found out it was breast cancer that had traveled to my head, she said, “Oh you don’t want that. But let’s not get ahead of ourselves.” Later, after seven hours of surgery, another bald head, and with 27 large staples from one ear to another, I was sent home by my smiling neurosurgeon. He had not smiled at all before; in fact, I would have described him as aloof and possibly cold. I think now that he might have been as worried as my family. But with a “No restrictions!” chant, he let me go home two days after surgery.

Recovering from surgery

It did take two weeks to get a completely cancer-free pathology report, but when I got it, I was jubilant. No cancer. No tumor. And no exhaustion. I was better almost immediately. The constant fatigue was gone, replaced by normal sleepiness that happens when natural, like bedtime or when you’ve exercised hard. I could understand simple math and put together agendas all day long. For the first four months after surgery, I felt highly energized. I could hike in the beautiful Santa Monica mountains around our house or do the seven-and-a-half-mile round trip walk up to the Ronald Reagan library near our home. Sleeping and eating took some adjusting, but they were a result of the anesthesia. Pictures of that Christmas show a joyful family.

Celebrities and cancer

I’ve read about celebrities with what are called Meningioma Tumors. I’ve read that television star Maria Menounos used a walker and was in the hospital for a week. She could tell that something was off and in researching her mother’s brain cancer problems, learned enough about the brain to speak intelligently to a neurosurgeon who agreed that she needed to be examined.

Sheryl Crowe (who also had breast cancer) had one. Elizabeth Taylor, who in an interview with Barbara Walters, described her problems almost as if they were words from my mouth.

Be your own advocate

I’m not known for being quiet. Almost five years after this tumor was removed, I was diagnosed with stage 4 metastatic breast cancer and now am on that arduous ride. What I learned from the brain trauma was that you need to keep telling anyone that you’re hurting, or tired, or that this is not normal for you. Don’t let anyone say “oh, it might take you three to four years to recover.” Demand tests to determine if that’s true. Take your health into your own hands because you’re the only one who can. This part of my journey ended with the moral “scream until someone pays attention to your symptoms!”

This is my story.