Wednesday, January 21, 2015

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 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.  



Friday, January 16, 2015

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.  

Sunday, December 7, 2014

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:

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


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

Wednesday, November 19, 2014

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 scan report is GOOD!



Sunday, November 9, 2014

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
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
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
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 :). 

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

Tuesday, November 4, 2014

Who Knew: November is Lung Cancer Awareness Month

     Until a few months ago, I didn't know that November is LUNG CANCER AWARENESS MONTH.  Apparently, not many other folks know this either. On October 1st, the first day of Breast Cancer Awareness month, there were splashy pink television, magazine, radio and newspaper public announcements letting us know how common breast cancer is, how to get screening mammograms and where to seek health care services.  They are wonderful notices...women telling women to take care of themselves. The iconic PINK RIBBON speaks for itself. Other than from lung cancer survivors, on November 1st, I didn't see any bump in lung cancer public announcements. 

     I've wondered why lung cancer doesn't get the same attention that breast cancer does. I've wondered because: 
  • ...lung cancer is the leading cause of cancer deaths among both men and women,
  • causes more deaths than breast, colon, prostate and pancreatic cancers  COMBINED,
  • ...20% of women with lung cancer never smoked, (like me.)
  • ...the diagnosis rate is increasing among women,
  • ...and, I have lung cancer.

5-year Survival Rates

         Lung cancer, overall,  17%
                 (Stage 4, the kind I have, 2%)
         Colon cancer, 65%
         Breast cancer, 90%
         Prostate cancer, 99%

      The lack of awareness hurts those of us with this disease.  There are fewer research dollars available to the scientists who are working on new treatments and potential cures.  Public funding and private donations are not nearly as robust as with other, more recognized, cancers.  

     This lack of awareness also hurts those of you who may get lung cancer in the  future.  Heightened awareness in the medical and public health arenas will drive the need for early-stage lung cancer detection through population screening programs.  

     The other factor causing malaise on the subject, in the general population, is the stigma that those of us with lung cancer are smokers.  Although not often, since I was diagnosed I've been asked several times if I'm a smoker.  Following my, "No, never" response, I usually add something like, "But if I did, I don't think I would deserve this."  

     I've seen a few lung cancer ribbon colors...white, pearl and transparent.  I've read that, initially, the ribbon was transparent, to symbolize that this disease is invisible.  It's the hidden or silent cancer among us.  Over time, the ribbon has taken on a visible color, pearl and white.  

     I know that my family and friends are well aware of lung cancer, now.  If everyone could tell one other person about my story, then perhaps, slowly, the word can get out - and one day, there can be a cure.  

Tuesday, October 14, 2014

Cholesterol Update, and a Clarification

The Cholesterol Update:

     Back in August I posted an optimistic blog entitled, "Reading Between the Lines":

I wrote, enthusiastically, about getting to re-start a cholesterol lowering medication.  My targeted chemotherapy has been working long enough that I didn't want to forget about other health issues.  Who knows, maybe there's a possibility that I may live long enough to worry about cardiovascular consequences of untreated high cholesterol.  So, in August, I started on a low dose of atorvastatin, (generic Lipitor), with the idea that we'd monitor my lipids and liver enzymes and make any needed adjustments.  I was feeling pretty damn cocky that I got to start back on atorvastatin.  

     A couple weeks ago I had follow-up blood tests to check my lipid profile and liver enzymes.  Great news!  My lipid profile was completely normal.  My cholesterol value, (which is usually in the mid-200's when on medication and in the 300's when off of medication,) was 162.  But, my liver enzymes were abnormally high.  Crap.  My cholesterol was low because I was knocking out my liver.  So...I'm off atorvastatin.  Crap...again.

and The Clarification:

     My last post had some information that I had misunderstood.  Thank you to my fellow ROS1 cancer ninja friends, Tori and Janet, for correcting my understanding about our medication, Xalkori.  

     Xalkori has not yet been FDA fast-tracked nor approved for ROS1-positive lung cancer.  It is still in clinical trials and is being used "off label" for ROS1 patients based on the available data for a similar mutation called ALK.  The recent New England Journal of Medicine's article presented data for its use with ROS1-positive patients, which is a step toward getting Xalkori approved by the FDA for ROS1-positive lung cancer.  This is really an important article.  With this data, insurance companies will have more trouble denying coverage for it.