Brain Tumor FAQ
As you might imagine, one of the most common requests I’m getting since releasing I Believe in Everything are queries about handling a brain tumor diagnosis, both from patients and their loved ones. As I’m able, I make time to talk to folks individually but I’m not scalable beyond one person so here’s my best shot at answering the most frequent questions that come up.
VIP note: I’m not a doctor. Please read the following with that in mind.
I was just diagnosed with a brain tumor. What should I know?
First of all, I’m so sorry to hear that. You might feel scared, upset, angry, confused, energetic or overwhelmed. All of those reactions are normal. Let yourself feel any and all of those feelings for as long as you need to.
Second, there are MANY kinds of brain tumors. You might not even know exactly what you’re dealing with yet. There are cancerous tumors (GBMs, Astrocytomas, for example) or benign tumors (meningiomas, schwannomas, etc.). In my eyes, the most important decision for you to make right now is to find the right doctor for you.
You should plan to get a second opinion, immediately. And then a third. You, as the patient, are more than a customer… we’re talking about your brain and your life here. There are many talented brain surgeons and there are also many assholes. Please know that you do not have to work with anyone who is disrespectful to your condition or being. (Seriously, fuck those guys.)
My tumor was resected at UCSF Parnassus in San Francisco by Dr. Michael McDermott. He has since moved to Baptist Health in South Florida. I recommend him without reservation.
I have also worked with Dr. Kevin McGrail at Medstar Georgetown in Washington, DC. He has not done any surgeries on me but he’s my local go-to since we moved to the area. I also recommend him without reservation.
I highly recommend looking for University hospitals. In my experience, they are the most savvy, credentialed and experienced folks out there. I’m sure you can find other talented neurosurgeons but university hospitals are a good place to start.
What should I bring to my appointments?
Record all appointments on your phone. You are too overwhelmed to understand medical jargon and process this experience. Recordings were vital for my husband and I to recall what was happening and when.
Bring MRI film (usually in the form of CDs) and any records or paperwork that you’ve accumulated along the way. I’d also bring any EEG results if you have access to those.
What should I ask my surgeon?
How many of these surgeries have you done?
What are the expected outcomes?
What are the potential side effects?
How often does this kind of tumor recur?
How quickly should I have surgery?
How long will recovery be and what will recovery look like?
My tumor is benign. What impact will this have on my life?
So, benign is great. I sure hope you bounce right back and can go back to a relatively normal life! Brains really don’t like it when you show up in their personal space so there may be some side effects, even if things go very well. Some of the side effects that I’ve experienced or heard about:
Seizures (partial focal or grand mal)
Hearing loss
Vision loss
Balance issues
Motor function
Facial nerves affected
Struggles reading and writing
How can I stay sane until the surgery?
In my case, my tumor was enormous and already causing issues so I had to have surgery 17 days after we found it. In some ways this was helpful; I didn’t have to sit in a purgatory state and could just focus on the logistics. But in other ways, this was whiplash and trauma-inducing. (Even now, 10 years later, I sometimes feel I’m anticipating a surprise shit-show to arrive…)
If you’re diagnosed with a wait-and-see approach, I recommend getting your ducks in order and finding a therapist. If your surgeon says they want to monitor it for a year and you trust this surgeon, build out a support system to keep you balanced for the next year. And, this could be my own trauma speaking, but I sure as hell would book a carpe diem vacation.
An example: a few years ago, we saw something new on my MRI. It wasn’t in the same spot as the original tumor and probably it’s nothing, but for a few weeks, it was really concerning. It would have meant another brain surgery OR losing an eye. I decided immediately that we would need to see the Grand Canyon if I was going to become a pirate. Luckily, we’re just monitoring things for now and I’ll visit the GC another time… but my own strategy in managing the uncontrollable is to not leave good memories to chance.
I’m not the patient… I’m a family member/spouse/friend/caregiver. What should I know about supporting my loved one?
They’re (probably) going to need your help. You’re (probably) not going to know how or what help will be required until it is.
We had two very young boys, which meant we needed family to come and help care for them and stay in our home. If your loved one lives in a small space, a nearby Airbnb or hotel might be a better option. Don’t take offense if that happens! This is not about you!
If you’re the spouse or partner of the patient, ask for and accept help. This shit is exhausting, scary and too much for anyone to do alone, especially if you have kids. Your patient needs you to be stable for the long-haul. Swallow all pride and accept help as often as you can.
If you’re a family friend, ask about organizing a Meal Train, Go Fund Me, Caring Bridge or other ways that folks can participate. In my experience, part of the overwhelm was handling everyone’s desire to support us… having a Meal Train and Go Fund Me allowed folks to contribute without requiring info or work from me or my husband.
What should I send?
Cards, flowers, food, though do avoid anything they’re deliberately asking you not to send. In our case, with two young kids, small toys and distractions were always welcome because it meant the kids were occupied for a little while.
Should I read your book?
You should read my book if you’re in the headspace to hear the story of a benign tumor, a young mother and some spiritual shit. If you’re stressed, overwhelmed or juggling your own life/death terror, maybe order it and put it on the pile of things to read once things calm down, post-op.
Is it going to be okay?
Aw, buddy. I don’t know what your definition of “okay” is.
I guess I’ll say two things:
On the wall of my hospital room, I hung the Eleanor Roosevelt quote: Do the thing you think you cannot do.” That was inspiring.
In moments of greatest stress, including my wedding day and brain surgery, I repeated this Julian of Norwich line: All shall be well and all shall be well and all manner of thing shall be well. It has always been more than helpful.
Keep going. xo