A Day in the City

As I write this, lounging on the couch at my parents' house, I feel physically, mentally, and emotionally exhausted. Today was my appointment with a neuro-oncologist at UCSF. My family and I left the house at 10am this morning, armed with all of my scans, lab reports, medical records, and arrived at the UCSF Parnassus Campus at 11:45am. After some coffee and a bagel at the food court, we rode the elevator up to the neuro-oncology waiting room where I filled out some more paper work. 

The doctor invited us back to an examination room where she showed us my pre- and post-op MRIs. I was a little surprised to see that the post-operative scan had so much tumor left. My neuro-surgeon removed the high-contrast portion of the tumor but the surrounding area remained. The oncologist said this was standard procedure but said she would like to consider doing another surgery to remove more of the tumor using some more sophisticated imaging. This imaging would allow them to identify the surrounding brain tissues' function and hopefully avoid disturbing it. 

My tumor is a grade 3 anaplastic oligodendroglioma, with a co-deletion of 1p and 19q chromosomes. Grade 3 means it is a more aggressive type of cancer but the deletion of 1p and 19q means that it IS responsive to treatment (radiation and chemo). The doctor is considering another surgery in order to remove as much tumor as possible before we start any other treatment. She will present my case to the rest of the UCSF team this week, determine the best options for treatment, and then contact me by next Tuesday. They may decide that another surgery in this part of my brain would be too risky, but she said that if surgery is a viable option she would want to go in as early as two weeks from now. 

After discussing the possibility of another surgery, she shared three options for treatment with us. Radiation alone, radiation combined with chemotherapy, and chemotherapy alone. There are side effects and risks that come along with each treatment and since we aren't sure which one will be best for me at this point she just touched on a few including hair loss, fatigue, nausea, and damage to my DNA. She encouraged me to look into fertility preservation as soon as possible because I will have to freeze my eggs before I begin any kind of treatment in order to have any chance of pregnancy in the future. 

I shared with her that I only have four more months of school left before I graduate and asked if it would be feasible to begin treatment after graduation. "I wouldn't wait four months," she said with no hesitation. 

The thought of another surgery within the next couple of weeks...is pretty overwhelming. But even more overwhelming and frustrating is the idea that I might have to wait to graduate. I am so close to being done! So close...But as my brother said, "This is your brain we're talking about, Maggie." I have to take a step back and let God handle it. This is COMPLETELY out of my hands at this point. No control...whatsoever...

So, what am I going to do while I wait to hear back from the oncologist? Well, first thing tomorrow I am going to call my primary doctor to find out about freezing my eggs. Then I'm cleaning out my closet. Literally. I'm going to go through all of my old stuff from high school and trash as much of it as possible. And then I'm going to register for wedding gifts with my fiancée. I know it's early, but...it sounds like so much fun right now...so why not?! 

Some of you have asked if there is anything you can do (thank you! :)), and my answer has been to please just pray. Here are some more specific prayer requests that I have at the moment: 

• Wisdom and discernment for the UCSF team 
• Clear direction as I make very important decisions about my treatment but also about my education
• Patience and peace as I wait to hear back about another possible surgery 
• Ease of communication as my fiancée and I live in different cities for the time-being 
• Rest. I'm having a hard time sleeping.

Do not fear, for I am with you; 

do not be dismayed, for I am your God. 

I will strengthen you and help you; 

I will uphold you with my righteous right hand.

Isaiah 41:10 

Whew!