Tags

, , ,

So far so good one week out on the new clinical trial drug from Merck.  It even has a name, that’s how confident they feel about it, lambrolizumab.  Say that five times fast.  The fatigue can be pretty severe but it comes and goes.   I am limited in what I can do without feeling completely exhausted, but on the plus side I have managed to stay out of the ER for two weeks and also spent Mother’s Day on the sidelines at the soccer fields.  A couple of folks have asked me if I’ve made plans for the summer.  I wanted to say:  “living?”.  Our daughter, of course, is pushing for the beach.

I think I’m over the Zelboraf side effects, knock on wood.  Being outside without being burned is glorious.  I’ve also been very fortunate to recover from my chemo-related tinnitus.  Having never dealt with a hearing problem, it was very frustrating and isolating.  My feet are dancing in whatever shoes I choose to torture them, my dry irritated eyes are all cleared up, my rash is gone, and it no longer looks like a scene from “Carrie” when I brush my teeth.  My gums were bleeding so much I thought I might lose a tooth.  Where are my eyebrows?  I hope they are coming back again.  Good times.

About a year and a half ago I wanted a treadmill, but quickly found out my spouse was strongly anti-fitness equipment, so I dropped the idea.  As Kenny Rogers crooned, you have to know when to hold ‘em and know when to fold ‘em.

So now that I’m officially on slow down mode, what does my loving family get me for Mother’s Day?  They bought me a treadmill.  My first thought was, “I think they’re trying to kill me.”  So far this new drug isn’t terrible, I’m not having flaming BMs and vomiting at the same time (been there, done that), however I am NOT approved for tread milling either.  My fears were soon assuaged however as the “feather lite” machine tried to kill Alan first.  I never thought of it as a weapon, but obviously it’s an equal opportunity threat.  Sometimes I watch the news and think “Have none of these fools ever watched CSI?” Criminals, do your homework and think outside the box.

I marvel at the end of another school year.  I am still here to enjoy, participate, love, and parent.  This is an unbelievable blessing.  I’m in a clinical trial for a great drug.   I never imagined I would get this opportunity. Even if it doesn’t work, I always wanted to do a trial to help further the research and get us closer to a cure.  Amazing.  I will return in two and a half weeks for another infusion, then find out at the end of July if it’s working.  It is never far from my mind however that life can change, or end, in an instant.  Today I am blessed and thankful.

Peace to you all,

Amy

Advertisements