Birthday Blog

     Three years ago, on December 14th, I was in an ER trying to make sense of the words I had just been told..."We see that you have metastatic cancer, and we don't know where it started from. We'd like to admit you into the hospital."  On that day in the ER, I was 54 years and one week old, and I had no idea what having metastatic cancer meant.


     During that hospital admission, we didn't get much in the way of good news. The imaging scans I'd had showed cancer in my lung, liver and bones. One positive piece of news was that I did not have mets to my brain.  (More on that in an upcoming blog.)

     Today I celebrate my 57th birthday.  Frankly, I'm astonished that I am still here.  If it weren't for Xalkori, (my targeted oral chemotherapy,) I wouldn't be. I've been on it, off-label, for 33+ months now.  I recently heard that FDA approval of Xalkori for ROS1 mutation-driven lung cancer is expected very soon...maybe even by the end of the year.

Lorlatinib...what a gift!

     It is a known fact that Xalkori won't work for me forever and, until recently, the next promising medicine wasn't known.  But, I got an early birthday gift a couple months ago. A Phase 1/2 clinical trial opened for the next new targeted chemotherapy called lorlatinib. I've been following a few fellow lung cancer ninjas with ROS1 mutation-driven disease, who developed drug-resistance to Xalkori, and who are now taking lorlatinib under the clinical trial protocol.  Get this...they're doing well!  Their scans are showing tumor suppression with few side-effects.  Wahoo!

      Now that I know what it means to have metastatic cancer, for this birthday, please join me in celebrating cancer researchers and the brave souls that enter into clinical trials...these are truly the pioneers that have allowed me, and others like me, to enjoy another year of life.

PROFILES IN LUNG CANCER - DAY 23: RACHAEL WILLEFORD

Lung Cancer Awareness Month 2015 

November is Lung Cancer Awareness Month.  This year I am participating in an effort to raise awareness through a Lung Cancer Blog Chain.  This is my second contribution. 

I'd like to introduce....

RACHAEL WILLEFORD, Lung Cancer Advocate and Co-chair of Lafayette (Louisiana) Free to Breathe*  

Rachael with Dr. Brendan Stiles at the Free to Breathe Lung Cancer Action Summit

[*Free to Breathe is a partnership of lung cancer survivors, advocates, researchers, healthcare professionals and industry leaders, united in the belief that every person with lung cancer deserves a cure.    http://www.freetobreathe.org/  ]

Rachael's Twitter handle:  PollywogPrinces

Rachael, what is your connection to lung cancer? 

Rachael with Lafayette Free to Breathe chair Tanya Farmer

"Four members of my mom's side of the family have died from lung cancer. Two of them were my mom's best friends - her brother and her cousin. They both were ever present in my life. In 2012, I learned that someone had started a fundraiser called Free to Breathe in my town, and I decided to participate.  Afterwards, I volunteered on a committee and would eventually become the co-chair of the event a few months later. After I learned that my mom's cousin, (who passed away in 2009,) and her father, (who also passed away from lung cancer in 1978,) had virtually the same survival rate, I dove headfirst into advocacy. I now focus on patient and community education and outreach, locally, with Free to Breathe. 

What is your typical day like?

"Well...I'm a mom with a full time job, so my days are hectic. Until recently I worked an 8-to-5 job at a radiation oncology clinic holding a few positions - from insurance billing to front desk to scribe work for a physician. Now I run the roads for a healthcare linen company, solving issues and making sure things operate smoothly. Afterwards, I come home to be a mom and a wife. When there's time to spare, I am very active on social media raising lung cancer awareness via Twitter and Facebook." 


What would you like us to know about you that we might not otherwise know?

"I'm a animal lover. We currently have two rescue dogs that we spoil and a fish named Spooky. Oh, and I'm a book lover. My husband jokes that I may be addicted. I like reading so much I ended up with an English degree."

Rachael, what do you want us to know about lung cancer?

"Everyone deserves hope! Anyone with lungs can get lung cancer. However,  knowing your risk factors and what symptoms to look for, along with screening, lung cancer can be caught earlier and survival rates will increase."

What brings you hope?

Team shirt honoring family members who died from lung cancer

"Survivors and research. I recently attended the Lung Cancer Action Summit and met several long term survivors.  Along with #lcsm survivors and a few survivors from my area, these people showed everyone that survival can be a reality. Also, the amount of progress made in the past four years is astounding. Advances in research are making the commitment to hope easier for survivors and advocates."






Thank you so much, Rachael, for giving us a glimpse into your world and how lung cancer touches it.  Thank you, too, for your work in helping raise awareness.


Yesterday's blog chain post:  http://lisa.ericgoldman.org/

Tomorrow's blog chain post:  https://lysabuonanno.wordpress.com/

PROFILES IN LUNG CANCER - DAY 8: JILL FELDMAN

Lung Cancer Awareness Month 2015


As part of Lung Cancer Awareness Month 2015, I am participating in a Blog Chain.  Along with several other lung cancer bloggers, I will be interviewing members of our lung cancer community.  Our hope is to raise awareness by bringing to our readers the faces and stories of people fighting our battle, those that care for us, and our doctors that are giving us a fighting chance.


 I'd like to introduce...

JILL FELDMAN, Lung Cancer Advocate and Warrior, (in that order.)

• Who is Jill?  She is the 13-year-old granddaughter who lost two grandparents to lung cancer within weeks of each other.  She is the daughter whose father died at 41 years old of lung cancer, nine months after her grandparents died.  She is the daughter whose mother died at 54 years old of lung cancer.  She is the niece whose aunt died at 56 years old of lung cancer.  She is the former president of LUNGevity who was diagnosed with lung cancer, during her term, at age 39.  She is a wife and mother of four teenagers ages 18, 17, 15, and 13 years.  Jill has been a lung cancer warrior for 6+ years.
• How does Jill incorporate lung cancer into her life?: She is a tireless advocate for lung cancer patients.  She was active in the leadership at LUNGgevity (president and board member) because of her significant family history.  Following her own lung cancer diagnosis, she became more focused on research advocacy and directly reaching out to those on the front lines of lung cancer.  As a patient, she has met with several top lung cancer specialists across the country and bravely side-stepped their recommendations; opting for her own treatment path.  Her renegade spirit was worked out well for her.  
• A typical day in Jill's life...differs depending upon the time of year.  In the summer she works at Culver Summer School and Camps, as a program
  director. (More on this later.)  Other times of the year, Jill works as a Consumer Reviewer for the Department of Defense (DOD) researching lung cancer, online and on-sight in Virginia, as a member of a panel tasked with deciding where DOD grant moneys should be directed. She connects with lung cancer patients as a resource for education and support, is a frequent lecturer, and is a busy mother to her active family.  She also teaches English at vocational schools.  
• What is something most people don't know about Jill?:   The program that she is the Director of at Culver Summer School and Camps is RIFLERY.   She holds the highest rank possible in marksmanship, "Distinguished Expert".  (Who knew?!) She loves teaching and developing campers' skills, while watching their senses of responsibility and confidence rise.
•  What brings Jill hope?  After the deaths of three friends with lung cancer, all in their 30's with young children, Jill needed to ensure that all cancer warriors know that "nobody fights alone." From that, Jill started the Traveling Hope Blanket.  The goal of this project is to bring comfort to those who need it by sharing the message of hope.  
  

"The hope I have is real because I can now recognize that hope is relative. I now think, and believe, that hope means so much more than simply a ‘cure’ for lung cancer!"     – Jill Feldman

        Check out the Traveling Hope Blanket website at:  

 http://travelinghopeblanket.com/

Click on 'Stories of Hope'...you might recognize some faces.

  


Yesterday's blog chain post:  http://samlmixon.blogspot.com/2015/11/profiles-in-lung-cancer-day-7-annemarie.html

Tomorrow's blog chain post:  https://lysabuonanno.wordpress.com/

Japan

     Well...we did it again.  Wynn and I took another great trip, this time to Japan with Nathan and Nina.  Not since 2012, when the four of us went to Ecuador and Peru, have we been able to travel together.  

     This was an important trip for me. Besides my mother and sister, who live in the U.S., the rest of my relatives all live in Japan.  Although several family members have visited us in the past few years, I had not been to Japan since 2006.  In 2000, our big millennium family trip was to Japan.  Wynn, Nathan and Nina had not been back since then. With work and school obligations, Nathan and Nina could only come for the first week.  Wynn and I stayed several more days.  It was an important trip because I didn't think I'd get another chance to visit Japan because of my cancer diagnosis. 

Tokyo Police Station's Lost and Found

     After landing at Narita Airport, we spent the first three days in Tokyo, mostly visiting family. Nathan lost his passport the first day we were there, so there was some drama dealing with the procedures and paperwork needed to replace it at the U.S. Embassy.  I had made copies of everyone's passports, but had left them on the desk back at home.  With the help of our friend, Brigid, we were able to get them emailed to us.  But...Nathan being the luckiest guy I know...someone found his passport and actually turned it into the Tokyo Police Department's Lost and Found. Strangulation of son by mother...averted. 

An Okada Family get-together in Ikebukuro

     We had dinner with some family members on father's side.  My aunt and two cousins met us for sushi.  

  
 




     One of our days in Tokyo we spent with my cousin, Takao and his wife, Yuki.  We walked the grounds of the Imperial Palace and down the main street in Ginza. 

Shinkansen engine

     For the second half of the first week, we took the Shinkansen, (bullet train), into the Japan Alps. The first day we spent in Nagano, site of the 1998 Winter Olympics.  We were surprised to see large farms at such high elevations. 

     Japan, being a serious agricultural country, is big into serving fresh produce.  We had lunch at a Farm-to-Table buffet, which we think would be a great restaurant concept to bring home with us.  

Zenkoji Shrine, Nagano

Kanbayashi Onsen's coutyard

      From Nagano we took a local train to Yudanaka - a small mountain town in an area famous for onsens, (a word meaning both hot spring baths and hot spring resorts.)  Autumn,  deep in the mountains of the Japan Alps, is spectacular.  The fall colors were just beginning to emerge.  We stayed at Kanbayashi Onsen, a traditional Japanese inn/resort, with tatami rooms, futon beds, onsens, casual kimonos called yukata, and amazing ten-course breakfasts and

dinners.  Each of us got a yukata, (a fresh one twice daily), to wear while staying there.  We wore them to meals, walking around the inn, and to the baths.  Men and women are separated, (but you can make special arrangements for a private onsen.)  After showering, we waded into either the indoor hot pool, or an outdoor natural hot springs pool.  The crisp Fall air was the perfect temperature contrast to the hot water of the natural spring, so we mostly hung-out outside.  

   

(We all wore a yukata while staying at the inn.)

A hot spring water fall at Kanbayashi Onsen

Each monkey had a different and distinct face.

     On day #2 in the mountains, we took a minimally challenging hike to see the Japanese macaque monkeys in the area. These monkeys, also known as Snow Monkeys, are famous for hanging out in the hot spring pools in the winter time.  When we were there, it wasn't cold enough and there was no snow, so the monkeys didn't get into the pools.  But they were fun to see.  There was an obvious alpha-male and many babies.  The redder the face, the older the monkey is.  They groom one another, obsessively.  The

experience was a little disappointing, however.  In autumn, the monkeys naturally stay at higher elevations because it isn't too cold and there is plenty of food.  When we were there, the park workers lured the monkeys down the mountain with food so that tourists, like us, could see them.  We arrived to the viewing area before the monkeys had arrived.  Initially, it was really cool to see them coming.  But as the park worker was tossing some type of grain around, more, and then many more, monkeys came down the mountain.  There was a tipping point where it suddenly felt like there were too many monkeys around and the

scene started to feel like a rat invasion.  


     The mountainous area was beautiful, and although it was cool to see monkeys that weren't in a cage, overall, the experience felt a little too staged for me.  

     From Yudanaka we took a train to Matsumoto, another beautiful mountain city, which is home to the oldest castle in Japan, Matsumoto Castle, built in 1504.  Smaller structures, adjacent to the main tower, were added over the next 70-80 years.  The castle's history dates back to feudal lord times and was actively used until the end of the feudal system in 1868.  It is spectacular. The interior is designed for protection and defense, but one of the towers has a moon-viewing room.  

A long line of people waiting to buy soba noodles

     It happened that there was a Soba Festival while we were in Matsumoto.  Who knew so many would turn out for noodles!

Okada/Sheade, Jimbo, and Mogi Families

     We returned to Tokyo for one day to have a party with relatives on my mother's side.

The middle house is ours.

     The next day, Nathan and Nina took the train, by themselves, to Narita Airport and headed home.  Wynn and I, along with my Aunt Sumi, Uncle Koichi and cousin, Minako, took a train to Atagawa, a sleepy seaside town on the Izu Peninsula.  Wynn and I are part owners of a family summer house there. Built into a mountain, this area is also known for its abundance of hot springs.  In fact, our house doesn't have a hot water heater.  All of our hot water comes from a local hot spring, which is piped directly into the house. When running a bath, you have to turn on the cold water tap or the temperature will be too hot to get in.  

     One day we took a train to a nearby town to walk along the Pacific ocean cliffs, but mostly we relaxed, read books, napped, and ate.  It was perfect. 

     
     We tried to get together will all my relatives, at least once, during our visit. This was our last night in Japan with my cousin, Sae, and her husband.





 
There were a few observations I made during our stay:

1)  Japanese people must be very honest.  We were so pleasantly surprised when Nathan's passport was turned into the Tokyo Police.  But, interestingly, my cousins were not surprised at all.  In fact, before we learned that the passport was waiting for Nathan at the police station's Lost and Found, my cousin's wife said to me that she was so surprised that it wasn't turned in because Japanese people are "so good about trying to help others find lost items."  In a city of over 13 million people, Nathan got his passport back.  Amazing. -  Additionally, we passed by many bicycle parking lots.  I did not see one heavy-duty lock on any bike.  Many had flimsy locks that look like they would fall off if someone rode away on the bike.  There were plenty of these flimsy locks to make me feel that they are enough to deter theft in this society.

There's a 3rd car below the black Volvo

2)  Space is a premium and the Japanese are creative in their use of it.  Check out this parking garage in the apartment building of one of my relatives.  Each parking space accommodates three vehicles, stacked up.  When you need your car, you insert a key into the corresponding car number, and the lift will bring your car to street level. 

3)  Japanese people are so healthy looking.  Walking the streets of Japan, it is obvious that obesity is a non-issue.  They walk a lot and eat loads of fresh fish and produce. I'm pretty sure I was the fattest person I saw the whole time we were there. 

4)  Whenever I go to Japan, I 
will always spend time in Tokyo because that is where my relatives live.  I love spending time with all of them.  And like any large city, Tokyo has many wonderful attractions - fine restaurants, fabulous shopping, great theater, incredible cultural sights, etc...but, it's so crowded.  The density of people and buildings is almost overwhelming.  Having had the opportunity to experience the mountains and seaside, I now know that I will want to travel out of Tokyo to give balance to my visits.

     I know how fortunate I am to be able to travel to far away places.  I also know how fortunate I am that, for now, my illness isn't interfering much with my life.  My knees and hips were challenged when hiking in the mountains and the marathon days of touring around.   But the minor discomfort was a small price to pay for the happiness I felt traveling with Wynn, Nathan and Nina.  

My Lung Cancer Community

     In the past, you've heard me blabbing about how grateful I am for cancer researchers who, not only discovered the ROS1 tumor mutation that is causing my cancer, but who also found a drug, a pill, that manages to work around the mutation allowing the gene to function properly. Thus my tumors shrank and have remained stable for over 30 months.  

     I recently realized that I've barely mentioned my LC community.  This group is made up of other lung cancer patients, the people that love us, and in some cases, our doctors.  I'm connected to them through the internet by way of several online resources: CancerGRACE.org, Inspire.com, and SmartPatients.com.  Additionally, I'm Facebook friends with many, and am in a couple FaceBook groups.  One of my FaceBook groups is 'closed', open to only ROS1 mutation patients and our caregivers.  I've met some of my friends in person at lung cancer meetings, but most I have not met yet.  Although most members of our ROS1 group live in the U.S., we have international members who let us know about their treatment options in their home countries. 


     As in any social group, there are leaders that rise to the top.  This is no different for my lung cancer community.  Our leaders are amazing advocates for us.  They are smart, articulate, well-read, well-written, organized, organizers, and have networked with clinicians, researchers, educational organizations, and fund raising organizations. Tori, Janet, Lisa, Craig, Lysa, and Stuart are a few ROS1-ers that contribute a bunch.  

     

     I am grateful for my LC community.  It is through this group I have been educated, enlightened, and supported.  Most members let us know when there are changes in their health statuses and share the information they gather from their doctors. I've learned so much from those who are walking my journey...a few paces ahead of me.   

     





     This week, an LC community leader and my friend, Tori, learned that she has three small tumors in her brain.  She bravely blogged about this:   

http://lil-lytnin.blogspot.com/2015/09/the-other-shoe.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+ALilLytninAroundTheWorld+%28A+Lil+Lytnin%27+Strikes+Lung+Cancer%29  

 

     Tori was diagnosed after me and, like me, has been doing wonderfully on Xalkori.  Her brain mets were found on a routine MRI and thankfully, she is asymptomatic.  Although there is a good option for treating the brain mets, and for overall treatment as she moves forward, her news hit me like a ton of bricks. It felt as if I was slugged in the chest.  She is young and has three young children.  She is needed by her family, let alone by our LC community. I will be sending Tori all the good karma I can spare.  Maybe you, too, can send some extra her way? 

CT Scans #10-Update, and more...

     Since the beginning, and for about two years, I had my blood drawn every month to check the level of my tumor markers.  Tumor markers  give me an indirect indication about the activity of my tumors...low levels indicate low or no growth, while elevated and/or rising values raise the concern that my tumors are growing. Additionally, every three months, I had CT scans to visualize my tumors and assess if they were growing, shrinking, or staying the same, (aka "being stable".)  

     I've always been bothered by having too many CT scans.  Certainly, it has been reassuring to know that each time I've had scans, so far, I've been told that my tumors are either shrinking, or are stable.  However, CT scans expose me to radiation, and although I've read that the increased risk of radiation induced fatal cancer is low, I never want to increase MY risk for more cancer...I already have plenty. Last year I negotiated with my oncologist and we settled on CT scans every 4 months.  Reducing my radiation exposure by 25% felt good, and do-able, as long as my tumor markers remained low.  

      Then, last April I went to see one of the leading researchers in ROS1 mutation driven lung cancer, Ross Camidge, MD, PhD in Denver, CO.  Dr. Camidge has been studying the value of tracking tumor markers and told me that he is comfortable having my blood drawn every 2-3 months and if the markers are within normal limits, having CT scans every 6 months.  THIS was exactly what I wanted to hear...or so I thought.

      Having CT scans less frequently has it's pros and, at least, one con:

PROS:  

1. Of course, 50% less radiation exposure.
2. I found that, between the tests, I thought about cancer a little less.  Along with keeping fewer appointments, I also didn't have to juggle other things in my life (work, caring for my elderly mother, and having fun,) to schedule my appointments around. 
3. Fewer tests means fewer insurance pre-authorization hassles and fewer bills.  
4. I also discovered that I needed to call on an inner strength that would allow me to tolerate a longer time between tests.  I convinced myself that if I could wait an additional 3 months before a CT scan, I would be proving to myself that I was confident in my medicine's ability to keep my cancer at bay.  (This was a "head-game" that's part of the mind-body-spirit B/S that I occasionally blog about.  To be honest, I floated this point between the 'pro' list and 'con' list and decided it probably a 'pro'.)

CON:  

1. Every once in a while, I'd have a bad day and was certain my cancer was growing again. I'd count on my fingers how many months away my next CT scans would be.  I wondered if I shouldn't call my oncologist and tell him that I was wrong...that I prefer more radiation.  I found myself saying  that old adage, "Be careful what you wish for, Lu."

     Well...I was able to stick it out.  I had CT scans last Friday, 6 months after my previous scans.  I was right to wait.  My tumors continue to be stable and there doesn't appear to be any new tumors.  WAHOO!  

     [BTW...I think I overlooked mentioning that last July I had a brain MRI was normal, meaning that I don't have metastatic disease to my brain.  DOUBLE WAHOO! WAHOO!  This is particularly good because Xalkori doesn't cross the blood brain barrier, so it doesn't protect it.]

     Here are a few photos from the end of summer:

White Sox game with Tom and Terri!

Chicago Skyline from inside the Chicago Art Institute

Showing visitors Chicago is always a pleasure.  It's fun and beautiful.

At 'The Bean" with life-long friend, Stacy.

Cirque du Soleil, Kurios - a great show with great friends, Jerry, Stacy, Brigid

Outdoor art in Chicago is amazing.  The Picasso is only one of many.

A Busy (and fun) Summer

It's been a while since I've blogged and that's a good thing.  My health, (both the cancer thing and my knee injury,) has been good so I've been busy taking advantage of the nice weather we've been enjoying in the Chicago area.  We've traveled some, making it to weddings and a weekend get-away to the eastern shores of Lake Michigan.  Although our summer fun isn't over yet, here are some recent photos...

In late-May, we went to Omaha for Emma and Andrew's wedding.  The special wedding guest was 'Smokin', Emma's family's pet turkey.  Oddly, as far as pets go, he's a pretty cool one.  It was nice he put a bowtie on for the ceremony.  

These are Emma's parents, Roger and Denise.  Denise and I have been friends since grade school. 

Sloan, me, Mike, Dale and Dan

Long time friends from Omaha met for dinner.  We forgot to take a photo earlier in the evening when everyone was there, but here are the last few. 
Thanks to Tom, Terri, Mark, Diann, Tim, Lisa, Kathy, and Cindy (all not pictured) for coming out for a great night of catching up.

                                

                                Brunch with old family friends, 
                                Jeri and Tsutomu

We've had ice cream with Hyat and his family at Daisy's, the new ice cream shop in Palatine.  

Wynn, Nina and I drove to Saugatuck, MI for a long weekend.   Kayaking on the Saugatuck River near Douglas, MI was so relaxing.  The water lilies were beautiful.

Anita, a childhood friend, was in town with her son, Will.  We met them for dinner at the Signature Room in the Hancock Building in Chicago.

Dear friends, Pat and Chuck's son, Dan, married Liz in a barn, in West Bend, WI.  It was our first barn wedding.  Chuck's home brewed ales were a hit and Liz's homemade hand pies were amazing.  We had a blast!

 


We have been eating really well this summer.  We are members of a CSA (community supported agriculture).  Weekly, I pick up a box chocked full of organic, locally grown, veggies from our farmers' market. Look at this food!  I'm sure that this is helping fight the cancer battle. 

I'll post again as soon as I can.  If I don't get to it for a while, it's 'cause I'm out having fun and too busy to blog.  (Either that or I'm napping in between the fun.)