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.

Fighting for the ACA...It's personal

     The story I'm writing about today happened a month ago.  For some reason, I have been hesitant to blog about what transpired on February 4th when my husband and I got in our car with the intention of attending a meeting with our U.S. House of Representative, Congressman Peter Roskam, of the Illinois 6th district.  Mr. Roskam was in our town to speak about the Affordable Care Act and we wanted to hear what he had to say and try to let him know why we feel that repealing it without a sound replacement plan could really hurt us, and many people we care about.   

     This is my husband, Wynn.  He is the father of our two children and a pediatrician.  He has been in private practice for over 30 years and through the 90's and early 2000's, he also volunteered at a clinic that offered free and low cost health care to children that didn't otherwise have access to it.  For over a decade, he served as the clinic's medical director.  His dedication to taking care of underprivileged kids is one of the reasons I love him so much.

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Courtesy of Sanford Morganstein

     This is my husband getting arrested while trying to make his way to that meeting with Peter Roskam.  Here's what happened that morning:

     When Wynn and I drove to the Palatine Township Republican office, where Mr. Roskam was going to be speaking, there was a large crowd protesting across the parking lot from the office.  The Palatine police were directing us away, but Wynn dropped me off near the office because I had recently had knee surgery.  A police officer immediately told me to "get off the parking lot."  When I told him I was going to the meeting, he said, "Only select Republicans are being allowed in.  You can stand over there," pointing to a grassy hill, "but you can't be on the parking lot." Wynn drove off to park our car and was soon standing with me in a crowd that was shouting, "Talk-to-us!....Talk-to-us!"  

     A few days earlier, Peter Roskam had been scheduled to speak to a group of constituents about the ACA, but ducked out a back door, before speaking, when he heard there was a reporter in the crowd. He's our Congressman and it seemed as though he wasn't interested in hearing from us.   

     Wynn decided that, as a constituent, he was going to try to attend the open, (now closed), meeting.  He was arrested for trespassing on private property as he walked toward the office's front door.  

     Here's what he would have told Mr. Roskam if he'd had the chance:

-The ACA has helped many of his patients get access to health care.  Kids are getting well and preventive care, which keeps them healthier and saves health care dollars. More than 1 in 8 residents in our district receive health care through the ACA.

-Provisions in the ACA have helped our children and his wife, (me).

• Allowing children to stay on their parents' policies until age 26 is a provision both of our kids, and many other young adults we know, have benefited from.   
• No pre-exisiting conditions clause in policies makes sense because, all of us, one day, will have a pre-exisiting condition.
• No lifetime caps - my oral chemotherapy, over the past 4 years, has cost a whopping $720,000, not to mention all of my CT scans, MRIs, etc.  I am certain that if any cap is set, I will have already exceeded it and I will be screwed, royally.

-It is morally wrong to take health care away from folks and mean-spirited to make them feel insecure by proposing to repeal the ACA without a better replacement.  The current ACA needs adjustments to better serve more Americans.  So, please Mr. Roskam, repair the ACA rather than repealing it.

     Here's the link to the local newspaper article about Wynn's arrest:

 http://www.dailyherald.com/article/20170205/news/170209362/

"As for future political activism, Sheade said, "I think all good citizens should get out and voice their opinions and let the government know how they feel. That's what Democracy is all about.""  

     Although Wynn and I have always made it a point to be politically engaged, other than always voting and walking in the march to protest going into Iraq years ago, we've never been energized like we are now.  Together we are fighting for the ACA because it's personal and we believe health care is a basic human right.  

P.S.:  This was the first time Wynn has ever been arrested - in his life.  No wife wants to see her husband get cuffed and hauled away - but this wife can't think of a better reason to get arrested.  You took one for the team, Wynn...for me and everyone else who needs the ACA.  Thank you and I love you.