With it Vs From It
“These types of lesions are usually MS or cancer.”
It was January 5th and those were the words that would serve as the start of 2025 for me. Two options, neither one was great. To make matters worse, the first appointment I could get with the specialist was in April. I was coming undone.
A few weeks earlier, after receiving a long-overdue diagnosis of chronic migraine with aura, my neurologist sent me for a routine brain MRI. On December 30th, while checking my email, a notification pinged: my results were in. Thinking I would clear that final "to-do" from my brain - both literally and figuratively - I clicked the file.
The finding: a significant lesion in my brainstem.
Now the first thing we need to understand is that all tumors are lesions, but not all lesions are tumors. So when you find a lesion, it’s important to find out if it’s made up of overgrown cells, i.e. a tumor, or if it’s an altered section of tissue, like a part of the brain that’s damaged by a migraine let’s say. (Yes, I am an amateur brain surgeon now, thank you.)
The second thing to know is that movies have conditioned us to believe brain tumor = death sentence. That correlation is stressful AF. For me, information is power, and I needed answers ASAP.
I spent the next few weeks in a barrage of MRIs and tests. I called every day and, thankfully, didn’t have to wait until April to be seen. While I didn't meet the criteria for MS, every report contained the same haunting phrase: cannot rule out malignancy.
My tumor (we now know it is one) is located in my brainstem - the motherboard for movement and basic function. Because of the location, my neurosurgeon was clear: a biopsy is far more risky than monitoring it over time. But getting to that conclusion was a nightmare of "medical limbo." After the MS team ruled out their specialty, they simply said, “Follow up in six months.”
With who? Where? I didn't have a doctor because I didn't have a definitive diagnosis.
To say this time was stressful is an understatement. On a side note, being a wellness coach and movement instructor during this time was near to impossible. I would consistently be demonstrating an exercise in class while simultaneously wondering if I was going to find out that I had a terminal tumor. How would I tell everyone? How do you end a class like that? “And what part of class would you like to take with you today? Also, before you go, I wanted to let you know, I might not be here next month…”
While I worried for my family, the emotion that kept surfacing was rage. A specific rage at the "wellness" industry that suggests we can be the exception to illness if we only eat enough flax seed or meditate properly. This brand of exceptionalism suggests that illness is the fault of the individual, rather than a failing of our collective food and healthcare systems. I was pissed then, and I still am.
I believe wellness is the support system that has helped me navigate each phone call, question, and moment of advocacy that has been necessary to navigate through the frustrating systems we have to deal with. Rather than something that makes us an exception to life’s experiences, tragedies or illnesses, it is the values we hold as truths and the practices that reflect them that make up our true wellbeing.
I felt rage not for my experience, but for reality that so many face. Working with many senior citizens who are low-income and navigating multiple conditions, I know first-hand that health issues are mentally challenging, physically exhausting and expensive, The suggestion that a cold plunge regimen or diet could avoid them is simply disrespectful to the patient’s experience at large.
My rage sent me to seek out someone who was a specialist in the type of tumor they thought it was - a low grade glioma. And I found him at the Lou Malnati Brain Tumor Institute at Northwestern Memorial Hospital. If you’ve lived in or have been to Chicago, you may recognize Lou Malnati as a famous pizza place - and it is - but the Malnati’s were/are also philanthropists who gave buckets of money to support cancer research based on their own families struggles as well as those of their friend Brian Piccolo. Those of you 80’s kids might remember the movie Brian’s Song?
When I first met with Dr Tate, he set me straight: It’s too dangerous to go in and biopsy. It’s not safe to leave it alone and just call it a day. So the plan is to watch and wait. These types of tumors are slow growing and the brain tends to be faster and better at adapting around them before they get invasive. It also might not grow at all. We just don’t know. Dr Tate’s favorite thing to say to me is “You’re probably more likely to die with it than from it.” Neurosurgeons are not known for fuzzy bedside manner…
Last week I had my 3000th MRI of 2025. I’m kidding, but that’s what it has felt like. I always listen to Taylor Swift if they have a music option. Not necessarily because I’m a Swiftie, but because when you know the words of the song, you can repeat them and pass the time. I can say with confidence that I know the MRI playlist like the back of my hand at this point. The good news is, my tumor has remained stable and I don’t have to have another MRI until a year from now. 🎉. From a financial POV as well as a mental health POV, this is incredible. I’m looking forward to forgetting about this little nugget in my head and moving forward with life this year.
I have symptoms I know to look out for and am medicated/treated for migraines, which should help overall and is, quite frankly. Nurtec OTC has been a lifesaver for me. Outside of the stress, the migraines have caused me more of a life interruption than my tumor and I intend to keep it that way (as much as I can.)
I’m very aware that this could be the end of the story of this tumor and we just live happily ever after or it could just be a chapter and there may be something else coming down the pike. The experience has truly made me evaluate how I want to live in my life. The places and people I want to spend time with and contribute to. The ways I want to offer my energy and reserve it. This one wild and precious life as Mary Oliver put it is just that - singular. This little tumor has become the best decision making tool I could ask for.
I’m never sorry that I say no to a draining, surface-level engagement in favor of baking, resting, reading or having a meaningful conversation. I adore working with my senior citizens, learning about their lives, and challenging myself to find ways “in” that can help them support themselves as they move forward with their health. I’m excited for the new year and the challenges of a new work adventure that is looming around the corner. New communities hold an opportunity for me to stretch my skills, reach, and connections - that feels very ALIVE to me and I’m here for it!
I’m even sitting here considering taking a dance class today. ¯\_(ツ)_/¯
So while this year has been so scary, it’s also been revealing in the ways of having to live with the hear and now, putting fears aside, celebrating the small wins, and choosing to not let time breathe down your neck.
If you made it this far, thank you for reading. I promise I’m doing okay. If you or anyone you know is navigating something similar, please reach out. It helps to have a partner in the dark.
xo Jenna
