Preparing for the long haul: I am having brain surgery yet again and will soon be in full brain cancer mode
Photo credit: Erika Dimmler
Dear friends: I have an unfortunate surprise to share. I am having neurosurgery again on Tuesday, May 17, 2022. My tumor is growing and I likely have a more aggressive cancer now.
I know from past experience that it will be difficult for me to write, text, and look at screens after surgery. The only time I have to share what is going on is right now because soon every method of communication on which I normally rely will be impaired. I know it is not a requirement to inform people about the twists and turns in my health status, but radical transparency is how I’ve chosen to live my life for the last 14 years—it would be out of character for me to change now.
The outline below is a high-level overview of what has happened, details on how you can help, an overview of my medical next steps, and how I am feeling in this moment.
What is happening?
After a routine, 3-month maintenance MRI, my neuro-oncologist (brain tumor doctor) and neuro-radiologist (imaging specialist) were surprised and alarmed after they saw what appears to be tumor growth that is more aggressive than it should be—especially considering I had tumor resected a mere six months ago. (Reminder: The pathology after my last surgery showed I still have grade 2 astrocytoma with the IDH-1 mutation. See “brief medical history” at the bottom of this page for more context.)
My case was taken to the [BIG FANCY ACADEMIC MEDICAL CENTER] brain tumor board where a team of neuro-oncology specialists—including neuro-oncologists, neurosurgeons, neuroradiologists, neuro-radiation oncologists, and functional specialists—weighed in on my case and expressed significant concern that my tumor upped its game over the last three months.
The recommendation from tumor board was that—even though no one wants to go into my young brain again so soon after the prior surgery—we need to better understand what is happening in there. The best way to know what is happening is to obtain fresh tissue. My doctors believe it is likely I no longer have a grade 2 astrocytoma (which is traditionally slower growing) and instead have something more malignant (such as a grade 3 or 4 astrocytoma).
In order to make more informed decisions about my treatment, we need to know what this tumor is made of. We also need to remove as much of the malignant tumor as we can, as safely as possible (while preserving my personhood, physical and cognitive function), and then make a plan for treatment—which will likely include radiation, chemotherapy, and more.
A few days ago, Brett and I spent 80 minutes with the neurosurgeon discussing all of the options and angles for surgery—from “do nothing” to “do all the things.” Together, the three of us mapped out a customized and detailed plan for me that involves an awake craniotomy with functional brain mapping, and then tumor removal. This process is a partnership between me and the surgeon where he asks me questions, and I respond while providing him with feedback in real time. (It’s actually really cool and I am waffling between feeling excited and concerned for my life. It’s a unique feeling.)
A note to my brain tumor fam: Yes, we have consulted with many individuals in neuro-oncology across the country. There is no need for you to provide advice. We’ve got it covered.
How you can help (if you want)
If you wish to help me and Brett, here are things you can do.
For local friends
Meals: My friend Erika is coordinating a Meal Train for those who want to help in the Sacramento-area. Erika ran our Meal Train last fall and it was incredibly helpful for Brett and me! Knowing he did not have to worry about cooking (shopping, prepping) took away a lot of stress for Brett, which in turn helped me not feel stressed. Also, ya’ll are great cooks and eating your food is one of the most loving and caring experiences of my life.
Transportation: By mid-June we will need help with rides to medical appointments in Sacramento, CA. I will be unable to drive for a few months after surgery. The treatment plan will dictate how many days I need to travel to radiation appointments, but it is likely I will need rides 5 days a week, for 6 weeks. Individuals who wish to help with rides should be vaccinated for COVID-19 and boosted.
If you are interested in helping with transportation to radiation treatments, subscribe to updates to the Meal Train page. Erika will add more details about how to sign up once we have a schedule.
For “far away” friends
Meals: We welcome gift certificates to Door Dash. Send gift cards to: brettx209@yahoo.com
Transportation: We welcome gift certificates for Lyft. Send gift cards to: XXXXXX. UPDATE: Do not send gift cards through Amazon. The Amazon/Lyft gift card integration may be a scam and we have filed a complaint through Amazon. If you have a Lyft account, it is best to send a gift card directly through Lyft Cash.
For all friends: My communications preferences
If you want to get a message directly to me around surgery and the weeks after, the following accounts will be monitored by my digital healthcare proxy—Dana Lewis.
DM or @ me on Twitter
DM or @ me on Instagram
Message me on The Liz Army page on Facebook
I will not be checking my personal Facebook account, LinkedIn, Reddit, or TikTok.
My personal and work email will have an away message with no return date, and I will not be checking email.
Medical next steps
Depending on what we learn from tissue obtained during surgery, we will move into the cancer treatment phase.
We are seeking a referral to [Slightly Less Fancy comprehensive cancer center] for radiation therapy because it is near my home. Brain tumor radiation is commonly five days week, Monday through Friday.
Similar to the surgery six months ago, I will also be referred physical therapy, occupational therapy, and speech therapy. In case you are interested, see this blog post for details about what I have been doing the last 6 months in PT/OT/ST.
How do I feel right now?
The social worker and palliative care friends in my life would be upset if I didn’t take this opportunity to address how I am feeling.
Honestly, I am pissed off. Just a few weeks ago I finally felt “cognitively ready” to return to my full self at work. I was about to step up to a position of leadership, and was offered an “appointment” within my organization that recognizes the work I have been doing for the last five years. Additionally, a project that kicked off a few weeks before my last surgery is now moving at an impressive pace. Even though surgery last October set me back 6-8 weeks, the most recent few months have been incredibly rewarding.
Two weeks ago, I was strength training three days a week, and running 2-3 days a week. I designed a customized functional recovery plan, took tons of notes, and began co-authoring an academic publication about this process with my neurosurgeon.
But now I have to stop it all. I am on pause. For who knows how long. I am mad.
I know this brain tumor is malignant and was fully prepared to begin radiation and chemotherapy now, months from now, or a year from now. Having another surgery is a surprise. I didn’t even know that surgery was on the table.
I feel like all of my hopes and goals are being ripped away during a peak moment in my life, and now I have to rebuild myself again.
Some of you might be tempted to say, “You are so strong, I know you will beat this.” Please don’t say this. The last thing I need right now is toxic positivity. I welcome your thoughts and prayers but don’t tell me everything is going to be OK.
Whether you are a “real life” friend, an Internet friend, you met me at a conference, or you know me as some rando on the Internet, I want you to know it is OK to be angry along with me. I give you permission to be mad and angry. You do not need to have the right words for me.
But also… I am incredibly privileged. I have a loving and committed partner. I have health insurance. My friends and “frolleagues” are doers who represent diverse perspectives; from community organizers, healthcare professionals, chefs, neuroscientists, educators, civil servants, behavioral psychologists, designers, musicians, and artists.
You are strong, caring, smart, hilarious, and curious humans who all have one thing in common: me.
The next few months are going to be a lot and I am going to rely on you.
Here’s a brief overview of my medical history for context
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At age 29 I was diagnosed with a slow-growing, malignant brain tumor called a grade 2 astrocytoma. I had neurosurgery to remove the tumor. “Malignant brain tumor” is another way of saying “brain cancer.”
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My tumor recurred in early 2009 and I underwent another surgery to remove the tumor. My diagnosis remained the same: grade 2 astrocytoma. The best in science at the time did not have strong recommendations about whether to do radiation and chemotherapy, or do chemotherapy alone. We decided to put me on a chemotherapy drug called temozolomide and watch to see if it worked without radiation. Since I was so young my doctors did not want to radiate my brain if we could avoid it.
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I took the chemotherapy drug for 24 months. I did very well on this drug, and did not require radiation. Today, most people in this scenario (“recurrent grade 2 astrocytoma”) would likely go on a combination of radiation and chemotherapy.
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Even though I still had a malignant brain tumor I was living my best life, experiencing no seizures, and remained symptom-free.
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Imaging at a top brain tumor center on the west coast revealed my tumor had recurred for a second time. (Learn how I felt the last time I learned I was having neurosurgery.)
I underwent an awake craniotomy with language and functional motor mapping, and then the recurrent brain tumor was removed. (Learn more about my recovery period.) Tissue extracted from the surgery revealed I still had a grade 2 astrocytoma. New science developed over the last 5-10 years revealed my tumor has “favorable” mutations, which directed us to not pursue radiation and chemotherapy and rather watch the tumor via regular imaging over time.
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A routine brain scan showed my tumor had not changed since surgery.
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A routine brain scan revealed changes over the previous 3 months, which greatly worried my medical team. The post on this page outlines more about these changes and our decisions.
