The other shoe has dropped: I am having brain surgery again
Hello friends, new and old. Liz here. Plans are in the works for me to have my third brain surgery sometime soon, likely in the next few weeks. Definitely in October 2021. It has been 12 years since my last.
Me and Brett in the waiting area of UCSF Neuro-Oncology.
I learned surgery was in my future a few days ago, and since then Brett and I have been scrambling to get our shit together. Tell our bosses, tell my mom, tell our close colleagues and a few close friends who we need to tap for help in the coming weeks. I immediately turned to a group text with Charlie and Adam, my two closest brain tumor buddies, and they’ve patiently responded to my frantic play-by-play updates since Monday afternoon.
And now we are telling you.
Here’s the deal: I feel fine. I haven’t had any seizure activity. I haven’t had any falls. My balance and coordination are on point and I have the fitstagram videos to prove it.
So that is why Brett, my doctor, and I were surprised to see tumor growth in my scan this Monday. Actually, that is sort of a lie.
My scan last July—these days, now paced every 12 months—showed the same change. During that telemedicine appointment my doctor prefaced the news with, “Now, I don’t want you to lose any sleep…”
And guess what? I did not lose any sleep. We made a plan for me to show up in person at the end of September. Based on past experience my tumor tells me it is growing through seizure activity, so I believed my body would tell me if things had taken a turn.
The scan does not lie
The good news is I am totally healthy and asymptomatic. But the scan doesn’t lie. The tumor is there. The new growth is in an area right next to the empty cavity in the left parietal lobe from where it was last resected in 2009. And there it remained unchanged throughout treatment (24 months of temozolomide, no radiation) that ended in April 2011.
It sat motionless until now.
I remember suggesting to my former neuro-oncologist at Kaiser that perhaps I was “good now.” I was “beyond the worry.” I felt like other people with brain tumors deserved more attention and monitoring because I was really healthy. I remember him reminding me that this would come back. If not in 6 months, then maybe 6 years. I should call him and tell him he was right on the money.
The new growth does not appear wildly aggressive (to my eyes) but we won’t know what is in there or if the pathology and associated biomarkers have changed since the last surgery until we get it out.
It’s a thing that needs to happen
I asked Brett if he felt scared or nervous. He says he does not. When I asked why that is, he said, “I think it is because you don’t appear scared or nervous either. I mean, I am not happy or excited about this. It’s not like surgery is an option… it’s a thing that needs to happen.” I concur.
Don’t get me wrong. We do not think for one minute this is going to be easy. Far from it. This time around we need to consider an expanded universe of concepts such as pre-op language testing and post-surgery acute rehab. And that’s just to recover from surgery. We have not begun thinking about the treatment that comes after. Right now, treatment is what weighs on the mind of my neuro-oncologist—and I am happy to let her hold that space for a while.
Brett and I have spent the last 11 years waiting for the other shoe to drop. We’ve been prepping, and advance care planning, and coordinating, and living our lives like mine could end sometime “soonish” for a very long time. I feel like I have been carrying a baby for more than a decade, and now it is time for me to deliver.
Hitting the books
And I’ve been using this time to study. To understand more about health care, healthcare delivery, the cost of healthcare in the United States, the education of clinicians, how research works, how brain tumors evolve, and how clinical trials start and fail. I’ve learned how patient (and care partner) voices can play a vital role in changing our healthcare system for the future (which is now) where people are even more empowered with their own healthcare information—combined with a growing culture of easy access to information through the Internet—to become more engaged in our care and to make more informed healthcare decisions. When patients are engaged, guess what happens? We have better healthcare outcomes.
And no one is more engaged than me.
Today I specialize in the communication of science and research dissemination for an academic medical center. Just a few weeks ago I found out I am an NCI-funded co-investigator.* I wouldn’t be doing what I am doing were it not for this blog I started after a brain tumor diagnosis at age 29. I did this because I wanted to understand what was happening to me, and to help make something complicated easier to understand.
Here we go again. Except maybe this time I will be a better writer.
Your friend,
Liz
*When things calm down a bit, remind me to tell you about the exciting news about being funded (with a team more brilliant than myself) by the National Cancer Institute to study and test patient engagement in the design of brain cancer research. It’s so cool, and I am super mad this is not the news I am sharing today.
If you are reading this and are looking for some way to help or make a difference, please consider making a gift to National Brain Tumor Society. NBTS has been by my side since day one, taught me how to be a patient advocate, and I am proud to serve on its volunteer Board of Directors. Thank you.
