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!




Mike said...

Terrific news Luna!

Tori Tomalia said...

Hooray! Good scans results are such a reason to celebrate!

Anonymous said...

Would your oncologist not use (relevant) cancer markers to direct these CT scans?, ie, order scan only if these markers are elevated or trending up, otherwise just the regular blood work instead?

Jenny Puntenney said...

So glad for the good news! Think of you often and pray for you.
Lots of love from Kansas!

Jenny Puntenney

Luna O. said...

Thanks, Mike, Tori, and Jenny!

To Anonymous: It's my understanding that tumor markers aren't reliable enough to direct care. However, my markers have been consistent with my tumor progression and regression. I'll ask my oncologist about this at my next appt. Thanks for the idea.

Matthew Ireland said...

So happy to hear this fantastic news, Luna!

Luna O. said...

Thank you, Matt. I appreciate you, and everyone else, reading my blog.