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. 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.)





Shirley Kroot said...

Luna, your fear is absolutely normal, as I am sure you are aware. You are such a strong person, and I believe that having a positive attitude is a big part of your strength and survival. You are still on our Temple prayer list. You are such an inspiration to all of your friends with all that you have endured. Stay strong.


Jenny Puntenney said...

Luna, you are an amazing woman. I can't imagine the strength you must have to live day to day with the knowledge that you carry. You are in our prayers and we send you all of our love from Kansas!
Jenny Puntenney

Anonymous said...

Hi Luna,

My mom also has lung cancer. Reading your blog gives me hope; I get nervous when you go without posting for a while. I hope you are doing well.


Luna O. said...

Thank you for reading my blog. I haven't had a chance to blog lately...too busy. But I will try to write a posting soon. Thanks for your concern. I am fine. I hope your mom is doing well, too.


Desmond Lucas said...

How i survived lungs cancer.
I was diagnosed of lung cancer in 2011 and the doctor (oncologist), because i was a chronic smoker who started smoking from 16 and told me i had just two years to live that my lungs had been damaged, that even on the best medication i still had two years. I needed help because i was scared to die and i did chemotherapy, radiotherapy and it was unable to treat or help me. I coughed nearly every minute. In my death clock counting just 6 months remaining, if you knew me then i was good as dead because the cancer had eaten me up. My wife was fortunate enough to contact doctor Amber, a herbal doctor who came and treated me in our house using his medicine and that is how i was saved (where western medicine and methods failed), that was the greatest decision my wife had taken aside marrying me. Today i am totally fine without any symptoms of cancer, it was all confirmed by my oncologist that i am clean. Do not die in silence or rely only on western medicine herbal medicine is very effective. You can contact the doctor on ( for more information about his treatment.

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