I had an MRI on Wednesday and have been putting off this blog post for a few days–but not because of the state of my health.
As a matter of fact, my MRI on Wed., Dec. 2 looked great. When “Super Awesome Nurse” compared my scan with one from May, we could see with our naked eyes that my remaining tumor had shrunk a tiny bit. Using a tool that approximates measurement on a computer screen, the remaining tumor went from 16.6mm across in May, to 13.3mm across on Dec. 2.
In other words, if my tumor was a contestant on The Biggest Loser, Alison Sweeney would have congratulated it for having a 2o% mass reduction.
Here’s the reason why I didn’t blog about this right away:
In addition to maintaining a personal blog I also follow the blogs of other brain cancer patients. I keep tabs on Erin, a young mother with a grade 4 glioblastoma. I check in on David, a guy who shares the same low-grade, but rare, tumor type as me. Recently I started following James, a guy who will have his first craniotomy in a few days.
And then there is Brett G., a guy in his late 20s who was diagnosed with an inoperable brain tumor earlier this year. I identify with Brett in many ways. We both live in northern California. We share the same medical team (Kaiser in Redwood City, and occasionally the University of San Francisco). We both love our “Super Awesome Nurse”, a term Brett coined for our shared nurse practitioner (and a term I will blatantly rip off from here on out). Also, we were both prescribed the same chemo regimen with Temodar.
However, all these coincidental similarities are insignificant compared to the main reason I identify with Brett: attitude. He’s positive, involved, reflective, and ready to put the smackdown on brain cancer.
On Wednesday evening after my appointment I read Brett’s blog from my iPhone. His last post was from the day before (Dec. 1) saying he was going to Kaiser the next day for an MRI and his appointment was at 2 p.m.
“Holy shit!” I thought. “My appointment was at 1:30 p.m. We just missed each other!” Crazy.
At work on Thursday I wanted to see if he posted an update, and he had. I read a post called First Progression. In it Brett explained that he didn’t have a good MRI. Actually, it was a bad MRI. His medical team told him that Temodar wasn’t working for him.
I will not go into detail about Brett’s blog because, well, you can read it for yourself (and I encourage you to do so). But because this is my blog I am going to be self-centered for a moment and explain how much this whole thing about Brett G. gets to me.
I am angry because I identify with everything he writes about brain cancer, i.e., the way he will fight it, the way he feels about chemo, his health. I am angry because Temodar is working for me and it is not working for him. I am confused as to why a drug seems to work for one person and not for another.
First Progression reminded me of how I felt when I learned that my tumor had grown. My first brain surgery was in September 2008 and the whole “brain cancer concept” didn’t phase me until I was told the tumor grew back.
I had a check-up MRI on Jan. 16, 2009 and Super Awesome Nurse had to give me bad news. I was not in a state to remember her exact words, but to the best of my memory I believe she said, “Liz, you have to have another brain surgery soon, because if you don’t, you are going to die!” She was concerned and she was firm. Super Awesome Nurse is very caring, but she has a no-nonsense attitude.
Up until that point I don’t think anyone ever told me I could die from all this. Of course I knew it was a possibility, but no one ever said it to my face.
When she said this I felt my face scrunch up and get hot. You know what I am talking about, right? The feeling you get when someone tells you your incurable disease has progressed and you could die?
Oh, I guess most people don’t know what that feels like. But I know what that feels like.
I started my 10th month of Temodar on Wednesday night. I usually don’t feel so hot during chemo week, but on Thursday night when I went for a walk with my boyfriend (also named Brett) I decided to turn it into a run.
I am not taking my life for granted.