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.