Tuesday, August 15, 2017

I Thought I Was Going to Die of Cancer...

...but now think I may die at the hands of white supremacists whose fire is being fueled by trump's support of their hate, bigotry and racism...or maybe by a nuclear bomb sent to the Chicago area by the North Koreans because of trump's ignorant and antagonistic rhetoric.  It sure seems like trump is going to get us, Americans, killed...one way or another. 

     I still may die of cancer.  I prefer that.  It may be sooner rather than later, if the Republicans and trump repeal and replace the Affordable Care Act with something that removes the pre-existing conditions clause and adds lifetime caps.  Despite recent failures to pass repeal and replace legislation, the Republicans and trump seem hell-bent on bringing it all up again because how else will they be able to pass tax cuts for the rich unless they take away health care from 30 million Americans and restrict access to care for those of us with existing conditions? [http://www.cnn.com/2017/07/18/politics/health-care-options-uninsured/index.html]

     I also thought that the scary uncertainty of my cancer was the ultimate in unsettling life worries, but now I know that the uncertainties for my personal safety, and the safety of the people that I love, are much worse under this president.

     I am a Japanese American woman living with stage 4 cancer in a country with a very unstable president.  It's not possible for me to end this blog post on a positive note.  But, I'm not ready to give up yet.  I'm writing my Congressman, (as lame as he is) and my Senators to let them know how I feel.  I ask you to do the same.  Please.

Find your Representative:   https://www.house.gov/representatives/find/
Find your Senator:  https://www.senate.gov/senators/contact/senators_cfm.cfm

      Last weekend we rode our bikes at the Chicago Botanical Garden with our friends Ann and Mike Kennedy, and saw the butterfly exhibit.  Around the world, people view the butterfly as representing endurance, change, hope, and life.

BTW...I can't bring myself to capitalize the "t" in trump; don't know why...just won't do it.

Saturday, August 5, 2017

Being Busy with My Leptomeninges

     This summer, like most of my summers, has been a busy time for me.  When we're not working, Wynn and I are usually out riding our bikes, meeting friends, working in our garden, hanging out with our kids, and fitting in a long weekend away.  The past few months seemed to fly by, and although we visited friends in NY in early July, when I looked at our calendar, we haven't done all that much in way of recreation.  What is abundant are medical appointments. 

     Earlier this summer I was experiencing some new symptoms.  They were very subtle and infrequent, and somewhat difficult for me to describe.  In mid-June I had an appointment with one of my many doctors and I did my best to share with her what I was experiencing.  All of my symptoms could be explained away, but they could also all be caused by a single problem...metastatic disease to my leptomeninges.  Here's what I've learned about the leptomeninges: 

     There are three layers of tissue that cover the brain and spinal cord.  Two of the layers are the arachnoid membrane and the pia mater.  These two layers make up the leptomeninges, and along with a third membranous layer and cerebrospinal fluid, (CSF), help protect the brain and spinal cord.  Sometimes cancer cells can spread, (or metastasize), to the meninges and/or CSF.  

     Symptoms may include: 
  • Headaches
  • Dizziness
  • Pain
  • Weakness or lack of coordination in arms and legs
  • Double vision
  • Seizures
  • Difficulties with speaking or swallowing
  • Difficulty thinking
  • Loss of bladder or bowel control
     I had experienced 5 of the 9 above symptoms...subtly and rarely, the most significant ones being pain in my back and a weird sense of clumsiness, and perhaps weakness, as I walked...on occasion.  So subtle was the clumsiness that I couldn't even articulate exactly how I felt, nor could I answer the doctor's more detailed questions.  

     As usual, I consulted my team of doctors.  Given that I had treatment for a metastatic brain tumor earlier this year and I continue to be on Xalkori, a targeted chemotherapy that does not cross the blood brain barrier, it was decided to work me up to rule-out metastatic disease to my leptomeninges.

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     Such a work-up entails MRI of the brain and the entire spinal column, and sometimes a spinal tap. So last week I was again in the MRI tube, but this time for a little over 3 hours. In the past, I've haven't had any problems with claustrophobia, but after the first 90 minutes in the tube, I signaled the tech and requested a short break. Being in the tube that long was definitely challenging.  

     The day after my MRIs, I was given the thumbs-up on my brain. There was no sign of leptomeningeal metastasis. The tumor that was CyberKnifed in March continues to shrink and there are no new tumors.  It took over a week to get the good news about my spine MRI.  Although there is no sign of metastatic disease to my leptomeninges, I have a bulging disc at L4-L5, likely causing my back pain and clumsiness. For now, since my symptoms have gotten better and there is a plausible, non-cancer, cause for them, I don't need to have a spinal tap.  (Yipee!)

     I am aware that my brain and spinal column are vulnerable to mets while taking Xalkori.  However, since easy access to the next medication I can try isn't quite ready, (it's not yet FDA approved), I'd like to stay on Xalkori for as long as possible. It's done me pretty well for 53 months and hopefully will keep working until the next medication is available.  

Wish me luck!

Side note:  I just read over this blog that I just wrote and I sound pretty matter of fact about the whole thing.  I guess it must be hard for me to weave into my story the sense of fear I felt when the idea that my cancer had spread to my central nervous system was first raised.  I remember taking off my sweater and the doctor saying, "Oh, you can leave that on for the exam."  My response:  "No...I'm sweating...you're making me nervous with all this leptomeninges talk."  That fear kept me from sound sleep for several weeks which didn't start to ease until I received reassuring news about my brain.  Total relief only arrived when I heard the MRI of my spinal column did not appear to show signs of metastatic disease...7 weeks after I was first alarmed. These times of scary uncertainty are not only difficult for me, but also for those close to me.  And Wynn, not only is he worried for me, but he lives with me during times when I cannot get much needed sleep and am unusually cranky.  Cancer sucks for a whole bunch of reasons.  

Thursday, June 1, 2017

Rolling With the Punches

     Until today, this man has been my oncologist.  His name is Robinson Ortiz, MD and I credit him with saving my life.  Dr. Ortiz was the guy on-call the day I was admitted into the hospital, through the ER, for a metastatic disease work-up.  That was in December of 2012.  He was kind from the moment Wynn and I first met him.  He gave us terribly bad news, gently, so we could absorb the words he had to tell us.  

     As soon as it was established that I had non-small cell adenocarcinoma of the lung, Dr. Ortiz ordered genetic tumor testing for mutations in two genes  known to cause the type of cancer I have.  Based on my demographics, the chance that I'd have one of these was estimated to be 80-85%.  I had neither.  

     Dr. Ortiz then recommended testing for mutations in a newly described gene  called ROS1.  Earlier in 2012, journal articles associating mutations in this gene with my kind of lung cancer were first published. Dr. Ortiz strongly encouraged me to test for ROS1 mutations because there was an available targeted oral chemotherapy.  I was hesitant because I would need another biopsy, and the chance I'd have a ROS1 mutation, based on the studies he had read, was only 1%.  Eventually, he talked me into it, I was found to have one, and the rest is history.  

     Dr. Ortiz is leaving clinical practice and, as sad as I am, I understand his decision.  I even support his decision.  Dr. Ortiz is a husband and father of four sons, under the age of 5.  The youngest two are twins.  He is taking a non-clinical position which will allow him to have more time with his wife and sons.  

     So here's what I have to say to Dr. Ortiz:

  • You saved my life by testing my tumor for ROS1.  Back then, testing for ROS1 was new, and 4+ years ago, many most oncologists weren't testing for it yet. But you did.   
  • You never let me down.  Every question and concern I had, you responded to immediately.  
  • I'm certain that you took care of all of your patients like you took care of me, so I understand that there was little time for your family. You will never make the wrong decision when you prioritize them. 
  • Thank you for allowing me to feel like a partner in the management of my care. 
  • I am going to be just fine.  I trust you and your referral to your partner, Dr. McKian.   
  • I wish you all the best and will miss you.
  • And one last thing...I never thought you'd leave me.  I thought, for sure, I'd leave you first...if you know what I mean.  But, with your care, guidance, and wisdom, I've lived well beyond my expiration date.  How can I THANK YOU enough?

Saturday, May 27, 2017

CyberKnife Follow-up MRI and More on the BBB

     As enthusiastic as I've been about the CyberKnife procedure I had to treat my metastatic brain tumor at the end of March, the only way to know if it worked is to have another MRI.  So, that happened last week.  

     I was disappointed when the report stated that the lesion is still there - big enough to be measured.  But, the report also stated that it is smaller than prior to CyberKnife and is "less enhanced".  Overall, the report sounded like it was trying to tell me that it looks like CyberKnife worked.  I realized that among all the questions I asked before and during my CyberKnife procedure, I never asked what to expect of the tumor following radiotherapy. 

     So...now I know.  A few days after my MRI, Wynn and I met with the radiation oncologist.  She entered the room with a big smile on her face and said, "The lesion is smaller and less enhanced, so I'm very happy.  It appears the treatment worked."  Following radiotherapy procedures, and after tumors are exposed to radiation, they usually dissipate slowly.  I had to admit to the doctor that, in my excitement of getting my tumor zapped, I thought it was going to be burned to a crisp...fried...annihilated.  I used the word "poofed".  The doctor, apologetically, said that she usually tells patients what to expect - and perhaps she did, but in my over-zealousness to get the show on the road, I didn't hear her.  

     The other good news I received that day is that there are no new tumors seen on this last MRI.  

     Since my last blog post about the blood brain barrier, (BBB), I've received some replies and comments that had me asking more questions about it.  I asked a few experts more questions and learned that although the BBB's permeability is altered following procedures like CyberKnife, this change in permeability is usually temporary :( .  I was really hoping that the alteration in permeability would work well for me, allowing Xalkori to get into my brain and protect it - forever.  The other thing I learned was that since my tumor was relatively small and the overall amount of radiation I received was low, the change in my BBB would also, likely, be small :( .    

     For now, I will stay on Xalkori because it's working well for me below my neck and I will continue to get regular brain MRIs looking for metastatic tumors.  As long as any future tumors are treatable with CyberKnife, I will continue on Xalkori.  There are two new, second generation, targeted medications, (lorlatinib and entrectinib), that are getting close to FDA approval, both of which cross the BBB.  My hope is that they will be available to me, when I need them, either because they are FDA approved, or through a clinical trial.  I'm scheduled for another brain MRI in 10 weeks.    

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Wednesday, May 10, 2017

CT Scans #13 and the Blood/Brain Barrier

CT Scans:

     My last scans were in January and I was hoping to avoid my next set until at least June. However, while traveling in Israel, I noticed more upper right quadrant pain so I recently had CT scans and blood tumor markers drawn.  I am happy and relieved to report that everything continues to indicate that my disease is stable, below my neck.  I still don't know why I have periodic pain in my abdomen, but I'm glad that when it comes...it eventually goes. 

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The Blood/Brain Barrier (BBB):
     ...has been something I've referred to in previous blogs.  I didn't know very much about the BBB, or how it works, so I thought I'd read up and blog about it.  As fascinating as it is, it's pretty complicated.  Some aspects of the BBB are still not fully understood by researchers and some aspects could not be fully understood by yours truly.  Since I only understand the basics, that's all I can share.  Here goes...

     The BBB's purpose is to protect the central nervous system (the brain and spinal cord), from potentially harmful chemicals and infections.  It is semi-permeable, allowing molecules needed to maintain stability, (necessary hormones and key nutrients), into the brain while keeping toxins out.  The brain is the only organ that has a protective mechanism such as this. 

     The BBB runs within the blood vessels of the brain and is not present in the vessels in other parts of our body.  The smallest blood vessels in our bodies are called capillaries.  Capillaries are lined with endothelial cells, which are loosely packed together.  This "loose-ness" allows most molecules, big and small, to flow around the endothelial cells and then pass from our blood capillaries into our organs.  

     The endothelial cells lining the capillaries of our brain are different. Unlike the endothelial cells found lining the capillaries in other parts of our body, the endothelial cells of the brain's capillaries are very tightly packed together, leaving virtually no space between the cells.  So tightly wedged together, these cells create an almost impermeable barrier between the brain and the bloodstream...especially for large molecule compounds.  Compounds that are very small molecules and/or fat-soluble easily pass into the brain.

(There are two other types of cells, astrocytes and pericytes, which also appear to play a role in the BBB.  In the resources I read, their roles don't seem to be as definitively understood yet.) 

     There are a few reasons the brain is not 100% protected, 100% of the time:
  1. Not all parts of the brain are protected by the BBB.
  2. Certain conditions can breakdown the BBB or alter its permeability: 
    • Hypertension
    • Exposure to microwave and radiation
    • Some infections
    • CNS injury or trauma resulting in inflammation, ischemia (an inadequate blood supply) or changes in intracranial pressure
    • Hyperosmolarity, or a high concentration of a substance in the blood
     For me, the BBB has kept my targeted oral chemotherapy, Xalkori, from getting to my brain.  Therefore, I knew my brain was vulnerable to metastatic disease. Now that I have had CyberKnife, (radiation), it's my hope that my BBB's permeability has been altered enough to allow Xalkori into my brain and it will be better protected. The downside is that my BBB has been breached - and of course I now worry that other crap, that I don't want in my brain, can now enter.  

Ohhhhhh...the life of a stage 4 cancer patient.  

Tuesday, May 2, 2017

Visiting Nathan in Israel

     In the past, when my husband and children traveled to Israel, I've opted out because I was afraid.  Traveling to the Middle East seemed irresponsible, given the obligations I felt I have here at home, (family, work, pets, etc.).  Over time, things have changed.  Although it was difficult leaving my elderly mother for nearly two weeks, having bad cancer allows me to shed some hesitations about traveling for two reasons:  I'm healthy enough now to go to far away places and really...what do I have to lose? 

     Our son, Nathan, has been in Israel since last September teaching English to underprivileged children, grades 2-6.  He has been living in a small city, north of Nazareth, called Migdal HaEmek where he works with both Jewish and Arab students. He's created opportunities for himself to see most parts of the country and was a great guide for us.  

     We started in Tel Aviv/Jaffa (aka Yafo).  Jaffa is the oldest part of the Tel Aviv/Jaffa area and is a Mediterranean port city dating back to ancient times.  It remains a busy port, while Tel Aviv looks like any other large, modern city I've been in. It's a hub of commerce and is largely secular.

     Traveling north of Tel Aviv, we drove toward Haifa in our rental car.  (Israeli drivers are crazy.  Nathan did all the driving while I relaxed in the back seat.) Near Haifa is Akko, (aka Acre). Old Akko dates back to Old Testament times with just about everyone (Canaanites, Ottomans, Crusaders, Romans, Byzantines, etc.) having had a presence.  


          This is the entrance of the El-Jazzar Mosque, inside the walls of Old Akko.  It was built in 1782-ish.  

    We stopped at Caesarea, a 4th century, B.C., town that was important to Greeks, Romans and many other groups passing through. There's ongoing archeological digging and the finds tell us that Caesarea was a bustling diverse metropolis in it's day with homes, businesses, bath houses, amphitheater, aqueducts and a network of streets.


     These are believed to be storage vaults or warehouses in Caesarea.  

     This mosaic is on the floor of the bath house.  It's very intricate.                                                                                      

     These arched ceilings were in a sentry building at Caesarea.    

     While in and around Nazareth we visited the Basilica of the Annunciation...both of them.  Roman Catholics erected a church at the site they believe the angel, Gabriel, came to Mary and told her that she would be the mother of Jesus.  Greek Orthodox tradition believes Gabriel came to Mary while she was drawing water from a local spring and erected their Church of the Annunciation at another location, near the spring. 

     Next to seeing Nathan, Jerusalem was the highlight of the trip.  It's a city rich with history, diversity, and conflict, even among groups within the same religion.  I always thought Tel Aviv was Israel's capitol city, but (embarrassingly) learned that Jerusalem is. We hired a guide, Itay, for the day.  He was born and raised in Jerusalem, and served as an artilleryman in the Israeli army for his national service obligation.  He was a great guide - knowledgeable about historical and contemporary socio/religious/political issues.
     This is the Western Wall.  It's a section of a retaining wall of the Second Jewish Temple built by Herod the Great, dating back to 500 BC.  It's a holy sight within the walls of Old Jerusalem, where Jews come to pray. 
     The gold domed building is Dome of the Rock, an Islamic Shrine in Old Jerusalem.   


      This is the unassuming entrance of the Church of the Holy Sepulchre in Jerusalem.  It houses 3 important Christian sites:  The place where Jesus of Nazareth was crucified,  the Stone of Anointing, and Jesus' empty tomb.  There are 6 Christian groups that control the church, the Greek Orthodox, the Armenian Orthodox, the Roman Catholics, Egyptian Copts, Syriacs and Ethopians.  

     Inside the low entrance is the site where it is believed that Jesus' crucifix was secured into the ground.  The line was too long, so we didn't go in, but I'm told there are also rocks believed to have held the crucifix in place.

     This is the Stone of Anointing, believed to be the place where Jesus' body was placed when he was taken down from the cross.  It is said that his body was prepared for burial here.

     Inside here is Jesus' tomb.  Again, the line was a mile long, so we didn't go inside. 

     Above the structure that houses Jesus' tomb is a domed ceiling with an opening, symbolic of his rising to the heavens.  Notice the sunlight streaming in the window on the left. 

     Many of the walls and ceilings inside the Church of the Holy Sepulchre are decorated with mosaic designs.  Each piece of mosaic tile was about 1 cm x 1 cm.  The artistry and craftsmanship were noteworthy.

     The Romans were everywhere, as evidenced by the Roman columns and arched entrance that were excavated in Jerusalem. The current "street level" is the top of the retaining wall in the back.  These columns were buried 2-street levels below.

     The domed structure is the Al-Aqsa Mosque in Old Jerusalem.  It is the third holiest site for the Sunni Muslims.

     From Jerusalem we headed to the southern part of Israel, making stops at the Dead Sea, Masada, and an oasis called En Gedi, now a national park.  Much of the southern portion of Israel is a desert called the Negev.  There weren't the expected rolling sand dunes in the areas we traveled to, but rather dry, rocky, tan-colored mountains and hills clearly created by erosion.  I was relieved to be in a car with plenty of gas, food and water as we drove through the Negev.  There's no shade.  None...and few landmarks, so getting lost in the desert would be a given if not driving on a paved highway. While speeding along we saw a few random camels loping along the desert hills.  I wasn't able to get my camera out quickly enough, so didn't get any pictures. 

     The Dead Sea has two parts, the Northern and Southern.  The sea, (actually a very salty lake...think the Great Salt Lake in Utah), is the lowest elevation in the World.  It's fed by the Jordan River from the north, but because so much water is taken out of the Jordan River for drinking, irrigation, etc., the Southern portion of the Sea is very shallow - like you can walk through it over to the country of Jordon.  

   These are ruins of homes on top of Masada - which was Herod the Great's winter retreat.

     Seeing the sudden greenery of an oasis was remarkable.  En Gedi is lush with greenery and has three water falls.

     Spring flowers were in bloom there.

     Visiting far away places, like Israel, opens my mind and my heart.  Beyond feeling tolerant of people so different from me, I make note of the differences and get an appetite to learn more...to understand betterI find myself focusing on the things we have in common.  

     When Wynn and I went to Italy, I noticed how beautiful and fashionable the women are.  While in Spain, I noticed how beautiful the men are...think Ronaldo.  In Israel it's the children that caught my attention.  Perhaps being born in the "promised land" makes them remarkably beautiful.  My favorite thing to do is people watch...

Hasidic Jewish kids playing at the City of David in Jerusalem

A group of kids dancing and raising money to fund a summer camp for underprivileged kids.

Arab women walking in the market in Akko.

A Hasidic Jewish family, dressed up for the last day of Passover.

A traditionally dressed Hasidic couple at the ATM...old meets new. 

An American girl had her bat mitzvah atop Masada.

While I was taking a picture of this door to a home of an Ethiopian Christian on the roof of the Church of the Holy Sepulchre...
...this man walked out.  I asked if I could take his picture and he nodded in agreement, but didn't open his eyes.  I think he's beautiful. 

Saturday, April 8, 2017

Guest Speaker at the University of Michigan

     Last week I was a guest speaker at the University of Michigan...an experience that would have never happened if I wasn't a cancer survivor, who blogs, and who keeps in contact with old friends through Facebook. 

     This is my first grade class picture:  

     I am third from the left, center row.  Laura Olsen is fourth from the left, back row.  We were 6-years-old here, and together we graduated from Central High School in Omaha, NE in the late 70's.  We both went onto college and graduate school and reconnected with each other, several years ago, via Facebook.

     Laura is now...Laura J. Olsen, Ph.D., Professor of Molecular, Cellular, and Developmental Biology, Professor of Ecology and Evolutionary Biology at the University of Michigan in Ann Arbor.  Together with Alexandra Stern, Ph.D., (Professor of American Culture at U of M), Laura teaches a class called Health, Biology and Society, What is Cancer?"  This 200-level course delves into the question "What is Cancer?" from different perspectives - the natural sciences, social sciences, and the humanities.  Last year, Laura contacted me about using my blog as a teaching tool in this course.  I was so honored that, not only did  she read my blog, but she wanted to share it with her students.  This year, she invited me to be a guest speaker.   

     The class was 80-minutes long and nearly 70 students were there that day, sitting around tables to encourage discussion.   I had a 30-minute PowerPoint presentation that summarized my 4-year journey with stage 4 lung cancer and Laura planned for 50 minutes of question/answer and discussion.  I was very skeptical that I had enough material to fill that much time.  

     I'm happy to report that it went well.  What I didn't expect were the thoughtful and engaging questions the students asked.  True to the goals of this course, our discussion covered a lot of ground...the science of my disease, new technologies behind my treatments, (CyberKnife included), insurance coverage and the Affordable Care Act, and how we, as a society, help each other manage the burdens of cancer.  Our discussion went over time.  

The two youngins are students who stayed after to chat.
(Wish I'd caught their names.)
      Thank you, Laura (far left) and Alex (far right), for inviting me to share my story with your class.  Thank you, also, to the students of AMCULT 241/BIOLOGY 241, Winter 2017, for welcoming me and giving me a sense of purpose in having cancer.  Although it's an awkward perspective, if I didn't have cancer, I wouldn't have had this honor...and it truly was an honor.