Tuesday, March 14, 2017

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 a MR spectroscopyInitially, 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:

Image result for keep calm and carry on

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

Wednesday, March 1, 2017

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, 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.

Palatine police arrest Dr. Wynn Sheade as he and about 400 others protested Saturday outside the Palatine Township Republican Organization office in Palatine while U.S. Rep. Peter Roskam was inside talking to organization members.
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:


"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. 



Sunday, February 26, 2017

More Interim Brain MRI Update

     Last Thursday I had an MR spectroscopy.  This is a more sophisticated and expensive MRI, which was supposed to give me additional information about the lesion in my brain.  Unfortunately, following the spectroscopy, the neuroradiologist was unable to better characterize the lesion and still cannot definitively report it as a metastatic tumor, or not.  It is "atypical" of what he would expect a metastatic tumor to look like given the type of cancer I have.  (Although it was a short time interval since my last MRI, I'm happy to report that the lesion did not grow in the past two weeks.)

     My first inclination was to say..."OK - so let's zap it anyway." The stress and frustration of this uncertainty is getting to me.  Thank goodness for the cool head of my oncologist.  Focused radiation treatments, (stereotactic radiosurgery -SRS), is not without side effects, so it's important not to do it unnecessarily. My options at this point are to wait another 8 weeks for another MRI, or I can seek other opinions.  I've chosen the latter.

     I picked up copies of my most recent MRIs from the hospital, (3 in the last 2 months), and have FedEx-ed them to experts at the University of Colorado and the University of Chicago.  I don't know how long it will take to get their interpretations and recommendations, but I hope it's not too long. 

Stayed tuned for more on this cliff-hanger....

Tuesday, February 14, 2017

Interim Brain MRI Update

     Last week I had another brain MRI in follow-up to one I had in December which found a small lesion that the neuroradiologist was not able to characterize.  Unfortunately, the second MRI found that the lesion has grown a bit, (1.3 mm), and its appearance is atypical.  Further testing by an MR spectroscopy is recommended.  
MRI room

     In all likelihood, this is a small tumor. The good news is that there is a treatment - focused, high-dose radiation to the lesion.  This treatment goes by various names:  stereotactic radiosurgery (SRS), gamma knife, cyberknife.  There are no knives involved, just highly focused radiation which, essentially, will zap the tumor to smithereens.

     The next step is to get the MR spectroscopy - actually the next step is to secure insurance approval, then schedule an MR spectroscopy.  If all goes as I suspect it will, I'll be blogging about my experience with SRS in the near future. 

     Although the process of figuring out what is happening in my head is stressful, I am optimistic about available treatments.

Please continue to wish me luck! 

P.S. Knee surgery recovery is going well. 

Tuesday, January 31, 2017

ACL Surgery - The Boy Scouts Are Right...

Related image

                   ...Be prepared.


     About a year ago, I came home and surprised a burglar. I posted my experience on Facebook and one of my fellow lung cancer ninja friends, Lisa Goldman, commented:  "Oy. I'm sorry Luna. I'm always kind of taken aback when regular crappy stuff happens to us. It feels like a stage 4 lung cancer diagnosis should render us immune to any other shit."  I know Lisa knows how it feels to juggle the ups and downs of life while dealing with serious cancer.  At that time, I couldn't have agreed with her more, but now...at least for today, I feel differently.

      Two years ago I had a downhill skiing accident and partially tore my right anterior cruciate ligament, (ACL).  I realized after the accident that I hadn't prepared myself for skiing that year.  In the past, for a few months before a ski trip, I was in the gym training - doing strengthening exercises specifically for downhill skiing.  For many reasons, I didn't do that before my accident and I paid the price.  In addition to getting really hurt, I ruined a ski trip get-away with my dear friend, Vicki.  I was so mad at myself.  

     Since then, I've been a dedicated rehab-er. Without exception, every morning I roll out of bed and do calisthenics and resistance training.  Two or three times a week I'm at a hot Pilates class and am regularly on my stationary bike or elliptical.  All this is to work toward being strong... mind,body, and spirit.  You know, that triad I've written about in the past.  (Excercising, especially in a hot room, greatly helps me manage chronic achiness I have from metastatic bone disease.)

     Last November, I fell to my knee and tore my ACL completely.  Despite being stronger from regular training, my knee was very unstable.  I saw my regular orthopedic surgeon and went for a second opinion.  Both surgeons recommended ACL reconstructive surgery.  After checking with my oncologists and getting medical clearance, I had surgery last week.

     Post-surgery nausea was pretty awful for about 36 hours, but as far as my leg goes...so far, so good.  I have minimal pain and 7 days post-surgery, I've hit all the milestones needed to be optimistic about my recovery.  Thanks to an ice cooling system, swelling has not been significant.  I'm able to bear weight nicely and am walking around the house, with a brace. I have a Camoped to bike (without any resistance) twice a day, which has helped me bend my knee to >90 degrees already. Physical therapy starts later today.

     I hope my recovery continues to move in the right direction.  I'm certain that it's starting out well because, unlike before my last ski trip, I prepared myself.  I was stronger heading into surgery than before that last fateful downhill run.  My goal is to never make that mistake again.  Life certainly has its ups and downs - some ups are really high and some lows seem unbearable.  And...although I'd love to be immune from "any other shit", I'll do my best to be prepared when I can be, and...bring it on.  

     This knee surgery has been a distraction for a follow-up brain MRI I will have next week.   Hopefully, it will help sort out the small, questionable lesion seen on my last MRI.  Bring that on, too.  I'm not quite prepared for all possibilities yet, but I'm working on that now.

      I can't end this blog without thanking Wynn, Nina, Brigid, Seth and Renee, and Ann for helping me get through this past week.  Thanks, too, to our nephew, Harold - 5th year orthopedic surgery resident - for the referral to my surgeon.  You were right, Harold.  Thanks to Rachel, RN - who is taking care of business for me at work. 


Monday, January 16, 2017

CT Scans #12, Brain MRI

     Since being diagnosed with cancer, (over 4 years ago), I've had follow-up CT scans and brain MRIs on a regular schedule.  Initially, the CT scans were every 3 months.  Overtime, as we (my oncologist and I) gained confidence in my targeted chemotherapy's ability to control my cancer, we extended the time interval between scans. At first I was able to talk my oncologist into spacing scans 4 months apart, and eventually to every 6 months.  Managing cancer means being exposed to agents I hadn't had in the past - chemicals, radiation, radioactive materials, and magnetic fields.  There's no way around it.  So, I really appreciate being exposed to 50% less radiation with CT scans every 6 months instead of every 3.  

     There are, however, negatives to less frequent scanning.  As confident as I want to be in the ability of my targeted chemotherapy to continue to keep my cancer suppressed, whenever I feel the least bit of pain, I worry that my medication has stopped working and my disease is foaming again. So, although the general plan is to have CT scans every 6 months, I've had to have mid-interval scans, here and there, in response to a bout of pain - usually in my upper right abdomen. 

      Last week I had CT scans of my chest, abdomen, and pelvis, (with and without contrast.)  The results indicate that my disease continues to be stable, despite my concerns of right-sided pain - that comes and goes.  My blood tumor markers also returned within normal limits. I was genuinely surprised and oh so relieved.  

      My brain MRI is another story, of sorts...

      Late last month I had a routine follow-up brain MRI.  (I find it funny that anyone can call any brain MRI "routine".)  I get brain MRIs every 6 months because my targeted chemotherapy, Xalkori, doesn't cross the blood-brain barrier, so even if it is working well to control my disease below my neck, my brain remains vulnerable. 

     Well, this time, the neuroradiologist reported that there is a small "non-specific rounded focus" in an area of my brain called the corpus callosum.  It wasn't there 6 months ago.  The neuroradiologist wasn't able to characterize exactly what it is at this point, but it may be a little tumor or an area of demyelination...or nothing.  The recommendation is to have another brain MRI in 6-8 weeks to see if the lesion is still there, and if so, is it bigger and can it be better characterized.  I'm scheduled for another MRI in February.  I, of course, have communicated with my oncologist and the ROS1 lung cancer specialist in Denver about this.  Everyone agrees that a follow-up brain MRI is the next step.  I've had to find my peace with the second part of their recommendation, which is:  "...and just wait to see what happens."  

    There's nothing for me to do while waiting, so I'm doing my usual, and having knee surgery next week.  (More on that in my next blog post.)  

      In the meantime, I feel like the guy in the middle.  He looks, to me, like he's trying to keep a stiff upper lip while waiting to see what his fate will be. 

Wish me luck!