It was over a year ago when I wrote my last post to commemorate my 30th birthday. In that blog on August 21st, 2021, I mentioned a possible recurrence. A small spot appearing on the MRI scans that could have been either tumor or scar tissue. And then I left you hanging…
I’m sorry about that, but in some ways my lack of writing was a good thing because I was simply living my life. The lack of any blog follow up was mostly due to exhaustion post-work, but it was also because I was playing with my adorable nephews, finishing my sailing certifications, buying a sailboat, and exploring my romantic life. Yet the lack of writing did not mean there were not medical updates to share.
When the small spot appeared in the summer of 2021, it was the first clank of the proverbial “can” landing since my surgery and treatments in 2018. The can that entered my life when I was 12 in 2003. Since then, it has always been “kick the can down the road.” Surgery in 2004, I kicked the can. Radiation and chemotherapy in 2014, I kicked the can. Surgery with a failed experimental treatment, radiation, then almost four years of immunotherapy, I kicked the can. And now the can has stopped once again. Honestly, “f&#K this can!”
I’m sorry for the language. I’m usually level-headed and anger isn’t an emotion I often associate with. But I’m angry because things have been good! Not that they haven’t been good during my past recurrences, but I have finally aligned how I’m living my life with what I value (even during a pandemic). Now, my life is interrupted once again by this can.
It’s been a slow march since summer 2021 of multiple “stable” scans, but with increasing symptoms, particularly seizures in my right arm. Since that summer, I’ve had 122 of those seizures. Except for being tiring, they’re harmless. I’ve had them on a first date, on an airplane, at a wedding, and during work presentations. It’s kind of like collectable cards! “How many unique places can my brain fire up too much electrical activity?” (joking)
I’ve been writing down a symptom log since the summer of 2021, which I recommend every patient does (particularly those with brain tumors). In addition to the seizures there has been some dizziness, sensory change, and changes in hand dexterity. But the seizure change seems to be the best indicator for the tumor growth as seen in the figure below:
Slow growing tumors like mine are a blessing and a curse. They’re not as aggressive, but it’s difficult to know when it’s time to act.
Well…it’s time to act now.
I will be undergoing surgery next week, Monday, December 5th followed by rehab and chemotherapy.
As you can see in the MRI above, there is a nodular tumor about 1.5cmx1.5cmx2.5cm. In addition to this, there are tumor cells like sand spread on a floor. The nodule can possibly be resected with surgery. The sand-like cancer cannot be removed (hence the need for chemotherapy).
The problem, as it has always been, is that the location is directly in the motor cortex that controls movement for my right side, so we can’t just pluck the tumor out.
When Dr. Wen, my neuro-oncologist and Yoda of the brain cancer realm, said it was time to act, he immediately referred me to my surgeon Dr. Bi. Not only did I love her demeaner, but also, she is doing innovative work with neuromonitoring. (see below)
Given the risk of functional weakness and/or loss on my right side, she will be using upwards of 60 to 70 electrodes to measure the electrical signals throughout my right upper and lower extremities.
I may have to make some challenging decisions in the next few days as we get the results of a functional MRI and consult with Dr. Bi. The more tumor we can resect the better my long-term outcomes are, but also the more movement I might lose. Thus, I’ll very likely go into inpatient rehab following the surgery and then outpatient rehab to regain as much function as possible.
After all of that, we will make decisions on when to start chemotherapy (which I’ll go into at another time).
I know all the above is a lot to process, so sorry to smush it into this quick blog post pre-surgery. But I felt one, it was a necessary update, and two, it was important to express and normalize these emotions.
When I left my appointment with Dr. Bi, I got into my car, looked around to see if anyone was there, and screamed. I’ve never done that before. In fact, I probably could have let out a better scream, but give me a break, it was my first time! I highly recommend everyone does this at some point to let out the stress we all carry. It helps, and it made me laugh too!
I needed to scream because I’m angry. All of what I’ve talked about with surgery, functional loss, rehab, and chemo is not to cure my cancer, but only “kick the can down the road.” F&#K this can! I’m going to give it a kick as hard as possible, but please, do not confuse that with a warrior mentality. I don’t subscribe to the “battle won or lost” verbiage. I’m going to kick the can as hard as possible while trying to maintain a good quality of life. I’ve done the hard work through deep reflection and writing my advanced directive to know where those lines of “quality” are. I expect I’ll have to adapt “how” I live, but I won’t compromise “what” I live for.
So, I guess let’s kick this f&#$ing can! 😉