Newsletter

Sunday, August 2, 2015

Holy rash almighty.
Below is a graphic image for mature audiences only. Consider yourself warned.

Did your screen break?
Now the rash is completely gone. I REPEAT IT'S GONE and not contagious. But how bad was that? I know I'm being dramatic but I've never had hives before and that was god awful and beyond itchy.
It only lasted about 3 days and started to disappear after I took steroids, but we don't really know what it was from. Top contenders for cause: 1) my new drug 2) a new pho place I tried (I'm not making a joke here. I seriously am leaning towards the pho as the cause). I am still on my drug now and have no sign of a rash, soooo que? nini? what?

Entrectinib looks good so far. I had a scan after a month of taking the pills and everything looked the same...so it stopped tumor growth and I'm looking for some shrinkage (mind out of ze gutter) in the following months. Dr. Ou says he is happy so far, so I'm happy. 
Side effects include fatigue, constipation (why do I always get the constipation side effect!), sore mouth (<weird one...sometimes it feels like I've been chewing all day but it doesn't hurt at all), and sensitive skin (give me dat sunscreen). I just got stimulants to get rid of the fatigue feel and I luvv them. But I don't take one everyday. You know I like you when I take a stimulant for you...just kidding, don't ever believe that. (But do know that I love you when I take a stimulant and a laxative for you.) 
I will admit this drug is not for the faint of heart, but what cancer treatment is?

Having too much fun at the 8 hour blood draw day. My hospital is across from a mall so I would literally go back and forth between a blood draw and shopping, with the catheter thing hanging from my arm, no shame. But those days are done, yeah! 

Now some sad news. I had to make a last minute switch from the full marathon run to the half marathon last weekend. ;(((. My most recent blood draw showed that my red blood cell count (hematocrit) was too low to do the full. I sort of wish I knew this before I did the 20 mile training run. Health comes first so I had to play it smart and downgrade to the half. To those of you who donated to my Addario Lung Cancer Foundation Crowdrise fundraiser page, THANK YOU THANK YOU  THANK YOU. You make me feel so special and give us lung cancer survivors such hope for this disease and future treatments. So much is happening in lung cancer treatment right now. Let's keep the acceleration going. Again, it gives us so much hope..especially for us youngings who like to have lots of drug options laid out. Together the SF Marathon ALCF team raised over $18,000 for lung cancer research. WOOT WOOT.

Video of the weekend made by the talented Bunny Ethan Sanchez.

https://www.youtube.com/watch?v=2Q6lEskT6Oc

Peace, lovin', & J Boogs.

Ps. Next on fun trip list: Oregon for a week long First Descents white water kayaking trip with other young adult cancer survivors. #cancercamp #round2 !