Tuesday, February 14, 2017

Interim Brain MRI Update

     Last week I had another brain MRI in follow-up to one I had in December which found a small lesion that the neuroradiologist was not able to characterize.  Unfortunately, the second MRI found that the lesion has grown a bit, (1.3 mm), and its appearance is atypical.  Further testing by an MR spectroscopy is recommended.  
MRI room

     In all likelihood, this is a small tumor. The good news is that there is a treatment - focused, high-dose radiation to the lesion.  This treatment goes by various names:  stereotactic radiosurgery (SRS), gamma knife, cyberknife.  There are no knives involved, just highly focused radiation which, essentially, will zap the tumor to smithereens.

     The next step is to get the MR spectroscopy - actually the next step is to secure insurance approval, then schedule an MR spectroscopy.  If all goes as I suspect it will, I'll be blogging about my experience with SRS in the near future. 

     Although the process of figuring out what is happening in my head is stressful, I am optimistic about available treatments.

Please continue to wish me luck! 

P.S. Knee surgery recovery is going well. 

Tuesday, January 31, 2017

ACL Surgery - The Boy Scouts Are Right...

Related image

                   ...Be prepared.


     About a year ago, I came home and surprised a burglar. I posted my experience on Facebook and one of my fellow lung cancer ninja friends, Lisa Goldman, commented:  "Oy. I'm sorry Luna. I'm always kind of taken aback when regular crappy stuff happens to us. It feels like a stage 4 lung cancer diagnosis should render us immune to any other shit."  I know Lisa knows how it feels to juggle the ups and downs of life while dealing with serious cancer.  At that time, I couldn't have agreed with her more, but now...at least for today, I feel differently.

      Two years ago I had a downhill skiing accident and partially tore my right anterior cruciate ligament, (ACL).  I realized after the accident that I hadn't prepared myself for skiing that year.  In the past, for a few months before a ski trip, I was in the gym training - doing strengthening exercises specifically for downhill skiing.  For many reasons, I didn't do that before my accident and I paid the price.  In addition to getting really hurt, I ruined a ski trip get-away with my dear friend, Vicki.  I was so mad at myself.  

     Since then, I've been a dedicated rehab-er. Without exception, every morning I roll out of bed and do calisthenics and resistance training.  Two or three times a week I'm at a hot Pilates class and am regularly on my stationary bike or elliptical.  All this is to work toward being strong... mind,body, and spirit.  You know, that triad I've written about in the past.  (Excercising, especially in a hot room, greatly helps me manage chronic achiness I have from metastatic bone disease.)

     Last November, I fell to my knee and tore my ACL completely.  Despite being stronger from regular training, my knee was very unstable.  I saw my regular orthopedic surgeon and went for a second opinion.  Both surgeons recommended ACL reconstructive surgery.  After checking with my oncologists and getting medical clearance, I had surgery last week.

     Post-surgery nausea was pretty awful for about 36 hours, but as far as my leg goes...so far, so good.  I have minimal pain and 7 days post-surgery, I've hit all the milestones needed to be optimistic about my recovery.  Thanks to an ice cooling system, swelling has not been significant.  I'm able to bear weight nicely and am walking around the house, with a brace. I have a Camoped to bike (without any resistance) twice a day, which has helped me bend my knee to >90 degrees already. Physical therapy starts later today.

     I hope my recovery continues to move in the right direction.  I'm certain that it's starting out well because, unlike before my last ski trip, I prepared myself.  I was stronger heading into surgery than before that last fateful downhill run.  My goal is to never make that mistake again.  Life certainly has its ups and downs - some ups are really high and some lows seem unbearable.  And...although I'd love to be immune from "any other shit", I'll do my best to be prepared when I can be, and...bring it on.  

     This knee surgery has been a distraction for a follow-up brain MRI I will have next week.   Hopefully, it will help sort out the small, questionable lesion seen on my last MRI.  Bring that on, too.  I'm not quite prepared for all possibilities yet, but I'm working on that now.

      I can't end this blog without thanking Wynn, Nina, Brigid, Seth and Renee, and Ann for helping me get through this past week.  Thanks, too, to our nephew, Harold - 5th year orthopedic surgery resident - for the referral to my surgeon.  You were right, Harold.  Thanks to Rachel, RN - who is taking care of business for me at work. 


Monday, January 16, 2017

CT Scans #12, Brain MRI

     Since being diagnosed with cancer, (over 4 years ago), I've had follow-up CT scans and brain MRIs on a regular schedule.  Initially, the CT scans were every 3 months.  Overtime, as we (my oncologist and I) gained confidence in my targeted chemotherapy's ability to control my cancer, we extended the time interval between scans. At first I was able to talk my oncologist into spacing scans 4 months apart, and eventually to every 6 months.  Managing cancer means being exposed to agents I hadn't had in the past - chemicals, radiation, radioactive materials, and magnetic fields.  There's no way around it.  So, I really appreciate being exposed to 50% less radiation with CT scans every 6 months instead of every 3.  

     There are, however, negatives to less frequent scanning.  As confident as I want to be in the ability of my targeted chemotherapy to continue to keep my cancer suppressed, whenever I feel the least bit of pain, I worry that my medication has stopped working and my disease is foaming again. So, although the general plan is to have CT scans every 6 months, I've had to have mid-interval scans, here and there, in response to a bout of pain - usually in my upper right abdomen. 

      Last week I had CT scans of my chest, abdomen, and pelvis, (with and without contrast.)  The results indicate that my disease continues to be stable, despite my concerns of right-sided pain - that comes and goes.  My blood tumor markers also returned within normal limits. I was genuinely surprised and oh so relieved.  

      My brain MRI is another story, of sorts...

      Late last month I had a routine follow-up brain MRI.  (I find it funny that anyone can call any brain MRI "routine".)  I get brain MRIs every 6 months because my targeted chemotherapy, Xalkori, doesn't cross the blood-brain barrier, so even if it is working well to control my disease below my neck, my brain remains vulnerable. 

     Well, this time, the neuroradiologist reported that there is a small "non-specific rounded focus" in an area of my brain called the corpus callosum.  It wasn't there 6 months ago.  The neuroradiologist wasn't able to characterize exactly what it is at this point, but it may be a little tumor or an area of demyelination...or nothing.  The recommendation is to have another brain MRI in 6-8 weeks to see if the lesion is still there, and if so, is it bigger and can it be better characterized.  I'm scheduled for another MRI in February.  I, of course, have communicated with my oncologist and the ROS1 lung cancer specialist in Denver about this.  Everyone agrees that a follow-up brain MRI is the next step.  I've had to find my peace with the second part of their recommendation, which is:  "...and just wait to see what happens."  

    There's nothing for me to do while waiting, so I'm doing my usual, and having knee surgery next week.  (More on that in my next blog post.)  

      In the meantime, I feel like the guy in the middle.  He looks, to me, like he's trying to keep a stiff upper lip while waiting to see what his fate will be. 

Wish me luck!

Wednesday, November 9, 2016

The Hug

Last night, when it was clear to my husband and me that trump was going to be our next president, we decided to call it a night and head to bed.  Just before ascending the stairs, we stopped and hugged.  It wasn't the usual "I love you, good night" hug, but rather a long, strong, and heavy hug.  

The last time we shared a hug like that was the night we were told I have metastatic cancer.  And the time before that was the day my mother-in-law came to our home to enter into hospice care for the last two weeks of her life.  

These are rare and distinct hugs with a very specific, unspoken message.  Through each of these hugs, Wynn and I told each other that whatever uncertainty lies ahead of us, we will be together.  Whatever challenges are in our future, we will be together, and while we are both strong individuals, together we are stronger.  

Hug the ones you love...a long, strong and heavy hug.  And remind each other that together you will make sure it's going to be OK.  

Saturday, October 29, 2016

Fall 2016 Update

     It's been nearly 3 months since my last blog.  I've discovered that, like many things in my life, the longer I take to write a blog post, the harder it is for me to get it done.  I don't like using the "I've been so busy" excuse, but really...I've been so busy.  So I'm trying to catch up...

     In August, Wynn and I made a trip to Denver, CO for the CancerGRACE Lung Cancer Patient Forum for EGFR, ALK, and ROS1 driven disease.  Like other patient education sessions we have attended in the past, we learned so much. The most meaningful information I heard is that there are now 7 new medications that are either in phase I or II clinical trials, or will soon be, that I may be able to try when Xalkori stops working for me. This news, literally, made me teary-eyed.  Since starting on Xalkori over 3 1/2 years ago, there has been no "next drug" for me to access.  I'm on the latest and greatest thing, and I have worried that my cancer will become resistant to it before there is something new to try.  Now I can worry less. 

ROS1-ers unite in Denver
     Although these drugs are, or will be, available through clinical trials, I have to remind myself that they will not be all available to me if, or when, I need them.  Clinical trials occur at specific medical centers and if a patient doesn't live near that center or does not have the resources to travel to that center, then that new drug is not available to them.  I am fortunate that I live near several large medical centers in and around the Chicagoland area, but it may be that the best clinical trial for me is not near my home.  

     The best part about attending patient forums is seeing my lung cancer buddies...and YES!...seeing them trumps the new information I got.  I first met many of these folks in Fall, 2013 at a CancerGRACE forum in Boston.  As I hugged Andy Trahan I said, "I want to cry I am so happy that we are all healthy enough to be here."  Andy's response, "Amen." - with his usual big, warm smile.

     In this group photo, those of us with lung cancer are holding up fingers indicating the number of years we have been thriving with lung cancer, (not just surviving with), since our diagnoses.  NOTE:  In the first row, second from the left is Linnea Olson - who doesn't have enough fingers to show us that she's been thriving for 11 years!  Her son, August, had to help out. 



     After the Patient Forum Wynn and I drove to Rocky Mountain National Park for a few days of R-and-R.  

        We got in two great hikes...

....and definitely want to go back.

Sunday, July 31, 2016

My Cancer Head Game

Crocosmia from my garden

     Definition of "head game":  any deceptions or tricks designed to confuse or manipulate a person. 

     When one hears the words "head game" one usually thinks that these words are referring to a certain psychology of an issue - at least that's my take on the phrase. Recently, for me there's a double entredre to the term. Let me explain:

     I had a bit of a scare this past week...

     On Monday I had abdominal pain in the area around my liver.  I also experienced nausea after eating.  Although neither symptom was as intense as when I was first diagnosed, the pain was in the same part of my body and coupled with nausea, brought me back to the day I was diagnosed with metastatic lung cancer I was in daily contact with my oncologist over the past week, reporting to him how the symptoms seemed to be milder, but persistent.  Blood tumor markers, drawn earlier this month, were all within normal limits.  Unfortunately, these normal test results didn't relieve me of my worry.  On Friday, after four days of emailing with me, my oncologist ordered stat CT scans of my abdomen and pelvis.  

     I received the results as soon as I returned home from having the scans.  They indicate that my disease is still stable and there is no imaging explanation for my symptoms.  I was immediately relieved, and embarrassed.   

     The day after my scans and receiving reassuring results, I was exhausted.  I am relieved that Xalkori is still working well for me, but I have no idea why I didn't feel well.  However, I'm pretty certain my exhaustion came from worry.  In all likelihood, my symptoms were caused by some 'bug' or something unrelated to my cancer...and today, two days after reassuring scans, I am not feeling abdominal pain nor nausea.  Knowing myself, the symptoms have probably faded away because the recent CT scans are telling me that everything is still OK.

     As objective as I try to be about my disease and my symptoms, having cancer has made me hypersensitive to any and all unusual feelings I have.  I feel like I'm on the road to becoming a full-blown hypochondriac. Small things, like mild pain and nausea, turn into thoughts that my medicine has stopped working and my cancer is growing again. These sorts of false alarms are what make me feel like I'm living tentatively.  In my last blog I wrote about trying to move away from this burden by taking on a new, healthier attitude.  

     Well...in less than three months, I've come to realize that, although I want a new attitude, it is easier said than done.  I, by no means, feel defeated.  In fact I'm in the process of taking on some new professional challenges as part of my mission to stop living tentatively.  However, as with most things along this cancer journey of mine, I need to be deliberate, methodical, and patient.  

     The other thing that has happened since my last blog post is that I had a brain MRI in June as part of my every-six-months-MRI routine.  I am happy to report that, so far, there's no evidence that my cancer has spread to my brain.  A few of my fellow ROS1-mutation driven lung cancer friends, who are also on Xalkori, have had to have treatments for brain mets. The good news is that there are treatments, but the bad news is that I continue to wait for them to show up.  All the evidence tells me that it is not a question of if I will get them, but rather when. So far, Xalkori has been doing a great job keeping my cancer stable below my head, but from the beginning, I've known that I have mets in my cervical vertebrae - so the cancer is, literally, inches from my brain.  I often wonder what it will take for a rogue cancer cell to escape and make its way to my brain.

     So... back to the 'head game' double entendre I mentioned earlier.  Every-day, normal aches and pains deceive this otherwise level-headed and objective person with a chronic illness and can easily turn me into a hyper-anxious stage 4 lung cancer patient who is certain the disease is raging again in my body, leaving me to fall into the 98% of patients who do not survive 5 years from the time of diagnosis.  It's a major head game for me, so often leaving me feeling out of control and exhausted. 

     The other head game for me is to figure out if there are any other things I can do to prevent cancer cells from getting into my brain.  In all my reading, I haven't come across any recommendations or even cockamamie ideas for preventive measures I can try.  So...for now...I try not to jump around or hang upside-down too much.  It's my new head game - stay upright and steady

Again, please wish me luck.

P.S.  Here are some pictures from the last couple of months:

Way and Diana came to visit!

     Way and I go all the way back to grade school and along with Diana, we all graduated from Central High School in Omaha.  Way and I were the only Asian kids in our grade school, so we have a special friendship - which has weathered the test of time.

Lung cancer ninjas at ASCO

     Lung cancer patients get together whenever possible.  Last month a few of us met for dinner after a day of lectures at the ASCO meeting in Chicago.  (I didn't attend the lectures - just showed up for dinner.)




Tuesday, May 10, 2016

CT Scans #11 and a New Attitude

     It has now been three years and five months since I was diagnosed with stage 4 adenocarcinoma of the lung.  It has been three years and two months that I have been taking Xalkori, the oral chemotherapeutic agent that has kept me around this long.  I was taking Xalkori for three years prior to it being FDA approved for ROS1 mutation driven lung cancer.  On March 11, 2016, Xalkori was approved - which doesn't change much for me, but will make the medication more accessible to those whose insurance companies denied coverage for it because it wasn't approved.  


California poppies...one of my favorites.
     The clinical trial for Xalkori use with ROS1-mutation driven lung cancer found, that for patients like me, the median "duration of response", (the time the medication worked before it stopped working), is 18.3 months. I had CT scans last Friday - and the good news continues...Xalkori is still keeping my cancer stable.  I sure as hell don't know why I am so lucky, but I've exceeded the median response duration by 200%, and I'm going for more.  
     More than being happy about my most recent CT scans, I am relieved.  Living with stage 4 cancer has left me living my life tentatively.  Dictionary.com  has the following definition for "tentative":

1.   of the nature of or made or done as a trial, experiment, or attempt; experimental:
a tentative report on her findings.
2.   unsure; uncertain; not definite or positive; hesitant:
a tentative smile on his face.

Moonlight Beach, California
     Both above definitions apply to how I feel. I suppose everyone's life is a trial, but when I didn't know I had cancer, I didn't think much about the gestalt of my life...I just lived.  I now, most definitely, feel like I'm living within an experiment. And...without a doubt, I am unsure, uncertain, not definite and hesitant about what lies ahead of me.  
     I hate this uncertainty.  It chips away at my self-confidence.  It makes me wonder which life milestones I will be around to celebrate with Wynn and my children, and which ones I will miss.  It takes away the courage I used to mustered that allowed me to take on new life adventures. 
Nathan got up on his board the first day!

     I realize what I need is a new attitude.  Xalkori has given me much more time than I ever thought I'd have.  As always, I should not overlook any opportunities, including this second chance to try new things. There is still uncertainty about what lies ahead of me, but I'm going to try to get out from behind this 'tentative living' crap, and look into some new adventure possibilities.  I have no idea what that will look like, but I'll keep you posted. 

Wish me luck!

(I wonder if I should have tried surfing?)