My Annual Donation Request

On Saturday, February 21st, my family and I will again be participating in Cycle for Survival, a fund raising event for research at Memorial Sloan Kettering Cancer Center. This fund raiser was started by a woman, Jennifer Linn, and her husband, David.  Jennifer was diagnosed with a rare type of sarcoma in 2004 and died in 2011.  She was an avid spin cycler and together with David they created an incredible fund raiser to support research for rare cancers at MSKCC.  

My family and I came to learn about this fund raiser because David is a relative of my sister-in-law, Debbie, and my brother-in-law, Bob, is a close friend of David's uncle.  (It's a family thing...)  In any case, Bob rallied our family to participate in this fund raiser shortly after I was found to have metastatic lung cancer.  

This event raises money for research into rare cancers.  Lung cancer is the most common cancer.  However, cancer researchers and scientists now share information, working collaboratively to find new treatments.  MSKCC, famously known for their cancer research and care, has contributed to data and information that has benefited all of us with all types of cancer.  This, along with with the family connection I mentioned above, is why I ride to raise funds for MSKCC.

Of course I worry that the people close to me are experiencing "donation request fatigue" because I've been asking for your support for the last two years. In the past, my family and friends have been incredibly generous. So generous that it's hard for me to come back each year to ask for more.  Please understand that I am only able to ask again because I still need more research for treatment options...and I'm still hoping for a cure. I also ask because, as a never-smoker, I know that lung cancer can happen to anyone. It happened to me and it can happen to you. If possible, please consider making a donation. It's a great cause for those of us who are counting on more research to keep us alive a little longer. 

Just click on the link below:
http://mskcc.convio.net/goto/LunaRidesforResearch

If you can't donate, please know that I understand.  It's not possible to contribute to every donation request that is received.  But...I will make you a deal.  If you donate to my cause, I'll donate to yours.  Just ask me :)

And...thank you.

Proposed FDA Regulations of 'Lab Developed Tests': A Potential Problem

I need your help.

There are newly proposed FDA regulations requiring approval for "lab developed tests", (LDTs).   Although these regulations will apply to all LDTs,  I'm particularly concerned because these regulations could have significant consequences for cancer patients.  Approval of LDTs can take years. I fear that those of us with advanced cancer will die waiting for the approval of tests that have already been validated; proven to be accurate, sensitive and specific. These regulations will put the brakes on breakthrough testing which leads to new treatments and potential cures.  I am alive only because of new science and the testing and treatments that have followed.  These regulations would be a huge step BACKWARDS. 

I know, one day, my medication will stop working and I will need testing 
to guide my doctors in a new treatment direction.  I will need this testing  quickly and, potentially, would not be able to get it if the test is new and not yet approved by this FDA regulatory body. 

Please read the information provided in the link below.  Please sign the petition.  

 https://www.change.org/p/us-fda-withdraw-proposed-ldt-regulations-these-could-limit-pt-access-to-validated-therapy-path2cure?recruiter=282810&utm_source=share_petition&utm_medium=twitter&utm_campaign=share_twitter_responsive

If you have it in you, let your Congressional Representative and your Senators know that these proposed regulatory measures should not be passed. (You can email them.)

Find your Sentors: http://www.senate.gov/general/contact_information/senators_cfm.cfm 

Find your Representative:  http://www.house.gov/representatives/find/

You can even email President Obama/the White House:   http://www.whitehouse.gov/contact/submit-questions-and-comments

Any help is greatly appreciated by me, everyone with cancer, and those that love us.  

The Fire Drill

The Preamble:

     For the past 22 months, I've been taking Xalkori, an oral targeted chemotherapy, to treat stage 4 adenocarcinoma of the lung caused by a ROS1 mutation.  Since being on Xalkori, cancerous tumors in my lung, liver and bones have not only regressed but have stayed, miraculously, stable.  I know this because every month I have blood drawn for tests which measure tumor markers, (CEA and CA19-9,) and every three-four months I have CT scans.  In the past, I've also blogged a lot about the uncertainty of how long Xalkori will work for me and how incredibly nerve-racking it is to not know when it will stop keeping my cancer at bay.  

      Last September Wynn and I flew to Boston for a patient forum to learn about the next steps in lung cancer treatments for folks with ROS1 mutation driven disease.  The information we learned was supposed to be the foundation to build the framework for a plan - what I need to do the day I learn that Xalkori is no longer working.  Since I returned from Boston, things have continued to go well for me.  So well, that thoughts of formulating a concrete plan started to drift from my consciousness.  

The Fire: 

     The results from my January tumor marker testing returned last week.  The CEA value was normal at 2.5 ng/mL, but my CA19-9 was 2409 U/mL, (normal is anything below 35 U/mL.)  In the months of September through December, my CA19-9 values were 10-15 U/mL, so 2409 was an alarming rise.  My oncologist called me at home, in the evening, to let me know.  His first suggestion was to repeat it, as soon as possible, because he was concerned about a lab error.  He told me that this elevated value wasn't consistent with the normal CEA result nor my reassuring CT scans, done just 8 weeks before.  

     Hearing that my CA19-9 was 2409 left me speechless.  My heart fell to my stomach.  I found it difficult to tell Wynn that there was a possibility that my cancer had started to return.  Despite knowing that this day would one day come, we were so sad.  I said to Wynn, "I'm afraid."  He said to me, "What can I do to help?"  (I love my husband.)  I didn't sleep well that night thinking about how I'd meant to have figured out a plan, but had procrastinated.  I started my "To Do" list somewhere between 2:00 and 4:00 AM.  
    

     The next day, after stopping at the lab, I went to work. It's good to work at the hospital where I get my care.  At lunch time I walked to the Interventional Radiology office.  Knowing that if my cancer was growing again, I'd need another biopsy, I stopped in to ask how big a tumor needed to be for an accurate biopsy.  The interventional radiologist pulled up my most recent scans and said that 8 weeks ago there would be nothing he could "hit" to biopsy because the tumors were too small.  He recommended repeat CT scanning if my second CA19-9 confirmed the 2400 value so there could be clinical correlation between the blood tumor markers and the size of my tumors on imaging.  In general, I learned, a biopsy would have to wait until a tumor had grown to at least 1 centimeter in size.

    I reviewed my notes from the Boston patient forum.  I had written in the margin, "Make consult appointment with ROS1 expert."  A couple days ago, I contacted one of them, and have started making plans to travel to Colorado to see him in the next few months.  

     From the time I learned that my CA19-9 was 2409 until I learned the results of my second blood test was nearly 2 days. (It felt like 2 years.)  It turned out that there was a lab error.  My doctor had my second blood sample sent to two labs for retesting.  One to the original lab and the other to another reference lab.  Both returned within normal limits, 25 U/mL and 18 U/mL. 

The Drill:
 

     I now realize that doing well on Xalkori had lulled me to a place of inertia.  I had some vague plan about making a plan, but not until I thought I was in trouble did I actually start talking to key people and asking necessary questions.  So, even though it was stressful having to wait 48 hours worrying whether or not my cancer was active again, it lit a fire under me...it was the heat I needed to feel to remind myself that I had work to do.  I now have some idea how I'll feel when I'm told that my cancer is really growing again and I am on track to gather important information I'll need to take the next steps, without wasting time.   This last round was a practice run...a fire drill, of sorts.  



   


 

Catching Up

     Last month was a busy one.  From the beginning of December through yesterday, we hosted five gatherings in our home.  Wynn and I love welcoming our family and friends - sharing food, drinks, games and laughs.  All were wonderful get-togethers which I hope we can continue to have for many years to come.  Lately Nathan and Nina have taken very active roles in helping us prepare for our parties.  Everyone likes to cook so there's no shortage of sous chefs in this house.

     An unfortunate part of being so busy is that I'm not able to get to everything I'd like to.  This year our New Year's greeting cards were sent out nearly two weeks into the January and I haven't been able to blog for several weeks. So, I'd like to take this opportunity to wish everyone a HAPPY and HEALTHY 2015!  

      In general, I feel fine.  Most of my days are good, with not-so-good ones interspersed among those.  However, for the past month, or so, I've been more fatigued and experiencing more joint achiness.  I attribute my general malaise to a busy December and the frigidly cold weather we've been having the last several weeks. 

Ann, Mike, me, Wynn

     For the first time in my life, I'm bothered by the winter weather in Chicago.  Having a chronic illness, coupled with being in the latter part of my 50's, makes four inches of snow with single digit temperatures and sub-zero wind chill indices seem crazy.  I think if I had one less burden, say...I didn't have cancer or the wind chill factor wasn't in the negative Fahrenheit range, I wouldn't be complaining.

Me, Margaret, Neil, Ann, Nina, Mike, Wynn

      
     Winter, however, brings snow and we've been able to go cross-country skiing a few times this year. Achiness aside, if the conditions are right, I'm going out! A good day of skiing makes it possible to forget about burdens. 

     I've never been a speed demon in anything I do, but now I'm even slower than I was before.  (Hardly seems possible.) "Thanks!" to my skiing family and friends for patiently waiting for me to catch up. 

Yup...that's me way behind my skiing party.  

Another Birthday Gives New Meaning to...

....the words "terminal cancer."

     Today I'm celebrating my 56th birthday.  I normally wouldn't announce my age to the world, but given that the chance I'd make it to this day was slim, I would like everyone to know that I MADE IT!

     The best part about reaching this birthday is that I didn't "limp over the line."  I was diagnosed with stage 4 cancer about a week after turning 54, and although the first few months of that year were beyond challenging, I've been fortunate to have enjoyed a, relatively, wonderful quality of life, despite having a terminal illness.  

      A great quality of life doesn't happen in a vacuum or by accident.  It is only with the love and support of my husband, my children, my mom, and MANY wonderful family members and friends that I am living my life as close to normal as possible.  All of you, including Wynn, have no idea how much strength you've channeled to me by being active participants in my complicated life.  

     Last year, I asked you all to celebrate with me:

 http://lunaoblog.blogspot.com/2013/12/its-my-birthday.html

     For this birthday, I am raising my glass to you with an ENORMOUS and heart-felt THANK YOU! 

I COULDN'T HAVE DONE IT ALONE.

(Oh....and F*&K terminal cancer.  I'm still here.)

CT Scans #8, Update

     I love living.  It's fun...mostly.  Having stage 4 lung cancer isn't fun, however.  It's a hassle and annoying. Everyday I have to remember to do certain things to increase my chances for living longer.  Entered into my iPhone are five daily alarms for medications and vitamins.  I space them out because some medications I need to take at a specific time with food, while others I need to take two hours before or 2 hours after taking other medications. I have an alarm for a medication I take once a week.  I have scheduled appointments with my oncologist and get an IV infusion of a bone strengthener once a month...and...every four months, I get CT scans of my chest, abdomen and pelvis to see if any tumors have started to grow back.  

     Most of my fellow stage 4 lung cancer ninja friends get scanned every three months.  It's standard.  In the beginning, I did too.  However, CT scans expose us to a lot of radiation and earlier this year I started wondering if maybe I should try to reduce my exposure.  I spoke to my oncologist and negotiated getting scanned every four months.  (I tried to get him to agree to every six months, but failed.)  So, the last two rounds of CT scans I've had have been spaced out by four months. 

     You would think I'd be happy because I got what I wanted.  (Well, herein lies the rub and why having cancer is so annoying...)  Knowing that Xalkori won't work forever, I'm constantly wondering if NOW is the time that it has stopped.  And...if it has stopped working, shouldn't I know that as soon as possible.  I engage in grueling mental gymnastics trying to figure out if it's better to reduce my radiation exposure or know, sooner, that my cancer is growing again.  

     For now, I've been holding out, reducing my radiation exposure 25% by getting scanned every four months.  I've realized, however, that the longer I'm on Xalkori, the more anxious I become that it has stopped working. I worry that my luck has run out. In my lung cancer community there are those that have been on Xalkori for many years, but there are also those who only got benefits from Xalkori for a couple of months.  I just picked up my 21st month prescription.  The uncertainty of how long Xalkori will work for me puts a damper on my enthusiasm that it is working for me now.   This uncertainty is an unwelcomed burden.  However...

     ...yesterday I had follow-up CT scans.  My oncologist called today to tell me that everything continues to appear stable, meaning that  Xalkori is still keeping my cancer in check.  Yahoo!



     This past summer I was driving east 
on Dempster Street somewhere in Skokie, (IL).  Stopped in slow traffic, I looked to my right and saw this tree smiling at me.  I was in a rush to meet some people for lunch so I couldn't stop to take a picture of it.  I made a point of driving home the same way and, luckily, was able to find it.  This smiling tree makes me smile and is among the many simple reasons why I think living is fun.  

Please join me in a smile...my scan report is GOOD!

    

     

Bucket List Item: Spain

     Although my family and I took many nice vacations before being diagnosed, having serious cancer makes it easier to take the time and spend the money to travel.  Not only is Wynn is on-board with this notion, he encourages it.  In October we spent nearly two weeks in Spain. Neither of us had ever been there so we were excited about this new adventure. 

Federico, tour guide extraordinaire

     

     Because we'd had such a positive experience on our Rick Steves tour to Italy in 2013, we decided to sign up again.  He didn't let us down!  Our main tour guide, Frederico, was terrific.  He's so knowledgeable and shared much of Spain's history through well-crafted and well-executed storytelling. Our group had 16 members, mostly from the U.S.; two were from Canada and two from Australia. Like before, this was a really great collection of interesting people. 

   

    
     We started our trip in Barcelona, which is a beautiful city on the Mediterranean Sea.  The region of Catalonia is in the midst of a heated and controversial effort to secede from Spain.  On our first day in Barcelona we were treated to a separatists' rally and parade.  


     Along with amazing views of the Mediterranean, the highlights of Barcelona included buildings by the famed architect, Antoni Gaudi, and the Picasso Museum.  Gaudi's works are unique and impressive, especially La Sagrada Familia, (the Holy Family Basilica), and Park Guell. 

Gaudi's La Sagrada Familia

    
    
     La Sagrada Familia, which was started in the 1880's, is still under construction.  It's slated to be completed in 2026, one hundred years after the death of Gaudi.

Inside La Sagrada Familia

Near the entrance to Gaudi's Park Guell

     


     

     

     These are the smoke stacks for the apartment building, Casa Mila, designed by Gaudi.  It's  widely believed that George Lucas was inspired by these smoke stacks for his Star Wars costumes. (I can see that.)





     Born in Malaga, Spain, Pablo Picasso lived in Barcelona for ten years before moving to Paris in his early 20's.  The Picasso Museum is in the Picasso family's Barcelona house, and a few buildings that are attached to it.  You wouldn't recognize his early works because he was trained as a classical painter.  You would definitely recognize his later works. 

Man in a Hat, by a young Picasso

Seated Man, by Picasso in his later years

 

    Together with his close friend and painting buddy, Georges Braque, Picasso invented cubism.

    

     

     From Barcelona we took the high-speed train to Madrid, which is a large European city rich with art, music, culture, architecture and fashion.  We visited both the Prado and the Reina Sofia Museums.  Both were filled with paintings

Flamenco

from great masters:  Goya, Velasquez, El Greco, Miro, Dali, and Picasso. We toured the Royal Palace and treated ourselves to a night of flamenco dancing. We joined some locals at a pub near our hotel to watch "El Classico", the soccer game between Real Madrid and Barsa, which also turned out to be a great slice of the Spanish culture.

            
           

    
     While in Madrid, we took a day-trip to Toledo, (pronounced TOE-lay-doh), which was an hour bus ride away.  Toledo is the capitol city of a historically

Toledo

important economic and political region in Spain, so it's loaded with riches that Spain acquired from the Americas.  The whole city is an UNESCO World Heritage Site because of its prominence in Europe's past and all the buildings, art, etc., that have been so well preserved.  Prior to King Ferdinand and Queen Isabella kicking Jews and Muslims out of the country in 1492, (the same year Columbus set sail for America and the start of the Inquisition), Toledo was a bustling city where Jews, Muslims and Christians lived side-by-side, as evidenced by the city's architecture.  In the Santa Tome Church there's an incredible commissioned painting by El Greco called The Burial of the Count of Orgaz.  It's a favorite of our brother-in-law, Bob, so we were happy to see it with our own eyes. 

The Cathedral in Sevilla

     Wynn and I went onto Sevilla after the Rick Steves tour ended in Madrid.  What an awesome city.  It's in the northern part of the southern region called Andulacia.  There are three UNESCO World Heritage Sites there:  the Alcazar Palace, the Cathedral, and the General Archive of the Indies.  We visited the Cathedral, walked all around it, but couldn't get psyched up to go inside.  I'm sure it's spectacular, but the days we were in Sevilla were also spectacular, blue sky, sunny and warm.  Wynn and I just couldn't bring ourselves be inside one more church. 

Inside the Alcazar Palace in Sevilla

When visiting the Alcazar Palace, built in the 10th century, one couldn't help but appreciate the craftsmanship, skill and time it took to erect and decorate the place.  It's the oldest royal palace still in use in Europe.  The Moorish architecture, the amazing tooled and tiled walls and ceilings, and beautiful gardens and courtyards are definitely worth the effort to go inside.  

     The food throughout our trip was wonderful.  We love the small portions and variety of tastes of tapas.  We ate lots of manchego cheese, gazpacho and paella.  Iberian ham is abundant; very tasty, but very fatty.  We enjoyed new wines and especially like the Riojas.  It worked out well for me to travel in a country where siestas are the

Rioja

norm.  Resting in the afternoon made it possible for me to make it through the late night dinners.  (Sitting down to eat at 8:00-9:00 P.M. is usual there, young children included.)  

     We found the people to be strikingly beautiful, very fashionable, welcoming and willing to try to speak to us in English.  Although Wynn and I both took Spanish in high school, the Spaniards' English is so much better than our Spanish, and we were so appreciative. 

     I hope Xalkori continues to work for me for a very long time.  It's only because of this miracle medication that my illness is kept in check, allowing me to travel with Wynn so we can continue to have shared memories.  I desperately want to get in more trips to new places with Wynn, Nathan, and Nina.   Wynn and I have some ideas for 2015 travel adventures.  Let us know if you'd like to join us :). 

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P.S.  Here are a couple of my favorite Picasso drawings.  He drew these with a single line.