“You have a choice to make,” my oncologist said last week. “We can wait another 3 months, do another set of MRI’s and then make a decision, or we can treat aggressively now, knowing that tumors in NF2 patients are known to grow over time.”
Let’s be real. Neither of these options sounded great;
- Wait for the tumors to grow, and then react.
- Proactively treat tumors that will inevitably grow.
I also knew I had a third option; 3. I could do nothing. I was just starting to feel ‘normal’ again after being diagnosed with NF2, and having 2 back to back brain surgeries. I missed life before my diagnosis.
But, pretending as though the tumors are not there will not make them disappear. Doing nothing will not give me more time with my family.
So, I quietly dismissed the idea of doing nothing, resolving myself to do something, and listened as my oncologist explained the pros and cons associated with Hydroxyurea.
It is a pill form of chemotherapy that I can take at home, without needing intravenous infusions. It works by slowing down rapidly growing cells, which could potentially keep all of my tumors at bay.
I asked my oncologist, “if it were you, which option would you choose?” He replied, “I would start taking it immediately.”
So, after a lot of research, and lengthy conversations with my medical team, I’m choosing to fight. I choose hope.
My oncologist put the order in for the chemo pills, and a heavy duty anti-nausea medication.
I will begin treatment today, June 24th, exactly 1 year from the day I was hospitalized for seizures and diagnosed with NF2.
I will need to go in for lab work once a week to be sure my body is strong enough to withstand the medication. The drug can make me nauseous, lose the little hair I have left, lower my already weakened immune system, make me feel extremely tired, and experience flu-like symptoms.
But, more importantly, it gives me a chance to fight my tumors and diagnosis while still continuing to live my life; I can still hold my kids, walk my dog, drive a car, go to work, and get in the ocean when we go back to the beach.
So many things have been controlled by NF2 over the past year; but choosing hope over fear is something I am very much in control of.
My kids may see me THROW up, but they will never see me GIVE up.
I don’t know yet what this chapter looks like, but this is still my story, and it is not over yet.
Craniotomy Me 