Brain Update: It's settled...

...it's a tumor.

      The thought of cancer spreading to my brain has been my worst fear...the kind of fear that brings tears to my eyes whenever I think or talk about the possibility.  Before my cancer diagnosis, I took my brain for granted.  Since my diagnosis, I was grateful everyday that my brain was cancer-free.  

     So now the thing that I feared the most has happened and surprisingly, I'm not freaking out.  I had two MRI studies and an MR spectroscopy.  Initially, the lesion did not look like a classic metastatic tumor.  I sent my images for second and third opinions and now my case has been reviewed by several oncologists, several neuroradiologists, a radiation oncologist and a neurosurgeon at five institutions, in two states.  After some back-and-forth, my oncologist and the experts are all on board with calling my lesion a metastatic tumor.

     In meeting with the radiation oncologist and neurosurgeon, and communicating with my ROS1 cancer experts, I've learned so much.  

• Despite my tumor being small, it's deep in my brain - in an area called the corpus callosum.  The corpus callosum is a region of bundled nerve fibers that connects the two hemispheres of the brain.  The good news it that this region isn't the part of the brain that is needed for speech, vision, hearing or cognition.  
• My tumor is so deep that it would not be accessible by conventional surgery.  However, I'm a great candidate for Cyberknife, aka Gammaknife or Stereotactic Radiosurgery (SRS).  If these newer surgical technologies weren't available to me, I would be someone who would be told that I have an inoperable brain tumor. 
• Over the next week, or so, I will have more imaging, (head CT scan and another brain MRI).  The additional scans are needed to precisely calculate the coordinates of the tumor in my head.  These coordinates are then entered into the computer of the robotic machine that will send several highly focused beams of radiation to my tumor. The focused radiation zaps out the tumor, but will not damage other brain tissue.  There may be some damage to tissue directly surrounding my tumor, but it is thought that healthy brain tissue has the ability to repair itself, while tumor tissue does not.  Since my tumor is small and the corpus callosum isn't the region of the brain responsible for important functioning (speech, vision, hearing, and cognition), the chances of me coming out of this procedure any different than going in is extremely low. 
• There are some side effects, but they are said to be "minimal and last a short time."  Cyberknife is done as an out-patient procedure and there is little to no down time. Most patients don't need to miss work, except for the treatment appointment.  Headache and tiredness are common.  The other, more scary side effects, are less common > rare. I've been struck by how the doctors I've met with and cancer friends who have had Cyberknife in the past, are all so laid back about it.
• The last thing I learned that I'm very happy to report, is that following a treatment like Cyberknife, the blood brain barrier is opened so that medications that previously did not cross the BBB, get into the brain better.  Therefore, I can expect that Xalkori will work better to slow down more metastatic disease in my brain.  This is important because the next medication for me isn't FDA approved yet, so I need to buy some time.  

     This next step seems scarier than the ones I've taken so far.  Even so, I've been, mostly, able to keep my cool. I knew this was eventually going to happen...it's the natural course of my disease. And because I knew this was in my future, I had a plan.  I just wish I didn't have to execute it this soon.  

    Today I reminded myself of my old mantra:

  ....and despite having a very bad disease, I continue to feel lucky.