I wanted to keep this blog light and asked my family to help by having the same tone for their updates. Truthfully, navigating this new T2 Flair/ tumor and the fear that goes with it has taken a much larger emotional toll than what I've communicated.

If we flashback to December 2010, that brain tumor was a surprise. While fear was a natural emotion, a small portion of me was relieved I didn't have the anxiety of choosing to have surgery and then selecting a surgeon. The decision was made for me.

1. I collapsed at work and rushed to the E.R.

2. An MRI shows large (nearly 2") brain tumor.

3. Dotors told me, "Legally, we can't keep you here; technically, you shouldn't go home."

4. BAM! Five days later, brain surgery.

I didn't have to decide, "should I have a craniotomy?" Time and necessity made the decision. And, with the absence of time, there was less fear.

This is not that. I got the results of my annual MRI on December 18 - There was a T2 flair in my mid-brain. Denial is an easy place to live, and I considered all the things it could be. I didn't want to say, "Yes, I have NF1, and based on medical history, it is a brain tumor that is growing."

So here we are, there is a thing lurking in my brain. Too deep and too small to biopsy, and there is a 2% - 5% chance someting could go terribly wrong if we did. I don't care what it is. I want it out. This diffuse whispy thing is hovering inside me, like a phantom, and I want it out.

Chemo is the only option. I have a care team of two power-houses, Dr. Jaishri Blakeley, at Johns Hopkins (she has been a primary since 2010), and Dr. Nicholas Blondin at Yale. He has an interest in the NF cohort, but has not devoted his career to it the way Dr. Blakely has.

They circle up and order another MRI.

Monday, January 11, 2021: During my telemedicine appointment with Dr. Blakeley, she tells me she wants me to start the oral chemothraphy drug, Mekinist, this week or next. She warns me that it may take some work. (The reason for this being, I would be taking it off-label since it is only approved for melanoma, even though in clinical trials, it has shown to help people with NF1 and brain tumors. There are 18 known patients on this, all in Dr. Blakeley's care.)

The warning and timeline did not prepare me for the rollercoaster that would come.

The roller coaster from January 11 to now produced sleepless nights for my family and me -- you need chemo, insurance denies coverage, no communication with status of claim, and then a call from the Yale Pharmacy -- they got me a trial month and are applying to Novartis for compassionate use.

Friday, February 5, 2021, Yale delivers on their promise, and a courier brings my oral chemotherapy. This will buy me time to appeal to the insurance company to cover costs for future dosing. I never thought I would be excited to start chemotherapy, but here I was, nearly falling down with tears of joy, giving thanks to God and every person that helped get me this potentially life-saving and certainly life-extending drug. I notify both hospitals. Dr. Blakeley, the NF specialist at Hopkins, responds with excitement. Then, in the afternoon, I get a phone call from Dr. Blondin at Yale; he has reservations about me starting it. A weekend goes by - the MEKinist, staring at me each time I open the refrigerator. I need to keep pushing and keep looking for data to substantiate why I should be on the drug so I have a strong appeal to submit to insurance.

I tried to stay positive and was mostly successful, appreciating that each provider wanted to do the best thing for me. They were talking together to figure out what would be the best thing for me, Sarah Johnson... not just some 41 yo female with NF1.

Monday Februry 8, just past 6:30pm Dr. Blondin calls. He talked with Dr. Blakeley over the weekend and read me the email she sent to him. She believes I should start. He still has reservations and wanted to hear my thoughts. Appreciating his deep care and wanting to do the right thing, I explained my experience and data I found (written by doctors I've seen in clinic or know). Together, with Dr. Blakeley in Baltimore, we decided to start the MEKinist.

Tuesday, February 9 4:30am, I get up for my first dose. This time will have the least impact on my life. If/when I'm well-hydrated, I'm usually up anyway. With the need to have two hours of not eating on either side of the dose, 4:30am will allow me to go back to bed and have breakfast, like a normal person. An earlier breakfast will also allow for me to have my first dose of doxycycline (more on that later) without having to stay up too late for my second dose.

I am in exceptional hands and grateful I have doctors and hospitals that care so much. The road has been challenging, and I'm sure there will be more challenges and anxiety to come, but for now, I am going to take my ability to have my first dose of chemo as a win.