Three and a half years after my diagnosis my health care system finally hired a neuro-oncologist for the Sacramento area. You’d think the California state Capitol would have a fancy oncologist a bit sooner than that, but apparently neuro-oncology isn’t a popular field (what with brain cancers representing only 1% of all cancers).
Kaiser would have hired someone sooner, but it look three and a half years to get a worthy candidate. I still plan to keep in touch with my medical team in south San Francisco, but I was highly encouraged to establish a relationship with this new doctor in case anything should ever get bad with me and I’d rather see a doctor close to home in the future.
Meeting the new doctor was fun–I got to have an intelligent conversation with a professional who knew my history and could chime in with a new perspective. For the most part, he agreed with everything my current team has done, but he reminded me of options I was presented with back in the day that I forgot about.
For example: my team at Kaiser suggested I take 24 months of Temodar, while the oncologist at UCSF suggested only 12 months. This was my decision to make, and after much thought I went with 24 months. The doctor at UCSF said to do 12 months because I could stop and then if the tumor ever came back I could take more Temodar. Since I did the full 24 months the chances that I could take Temodar (or any other chemo) again are low.
I thought, “Why did I make that decision?” And I remembered I did this because I was healthy and I was tolerating Temodar quite well–better than many others. I didn’t want to stop a drug that wasn’t causing major discomfort, and was saving my life.
He then asked Brett and I, “So have you thought about what you would do?” And we were like, “What would we do about WHAT?” And he said, “When the tumor grows back, what will you do?”
That shut us up for a minute. Of course, deep inside, on rare sad days, I worry about what would happen if I died and left Brett all alone… But I have to admit, I haven’t done much thinking about the steps leading up to that crazy situation. Ninety percent of the time I still think I am invincible, like a teenager who just got a drivers license.
Then we talked about various scenarios and situations. Inside I ‘D’oh-ed’ myself for taking a new job and not taking he easy route, career-wise. Maybe I should have stuck it out with one employer for the rest of my life. Ugh.
Believe it or not, the last three and a half years I’ve lived in ignorance of how this whole life expectancy thing will work out. But as this new doctor reminded me, “Grade twos will turn into grade threes and fours. Eventually.”
Brett had to leave the appointment early, and after he left I asked the doctor in a “level with me” voice, “But really, aren’t there cases when grade twos just stay a grade two forever?” I implied that with my youth, health and intelligence, someone as awesome as I must be spared from this injustice.
“Rarely,” he said. And by rarely he, he meant, “Only if you die of something else.” (My interpretation.)
But then he quickly followed that up with, “I have a 60 year old patient who just got diagnosed with a grade two Astrocytoma. And you know he didn’t just develop this tumor overnight. He could have had this since he was 12, and it just now he is feeling the affects.”
And I knew he was right. That perspective gave me hope. My tumor is slow growing. I never had any symptoms before I had a seizure. And the only reason I have seizures is because of where the tumor lives. I could have had this tumor since I was 16 and would have never known about it if I didn’t have warning signs like seizures.
We talked about my options if it were to come back. Surgery is an option depending on how the tumor grows, and for some sick reason, I’d rather have surgery than radiation.
And for some really sick reason, I’d like to have an awake craniotomy next time around just for the sake of having the experience. How many people can say they’ve done that?
Is it weird that I’m afraid to go on a roller coaster, but not to have an awake brain surgery?