My Liver is a Wimp


Time this holiday season and from my last update sure seems to fly by. For Thanksgiving we drove out to Denver to spend time with family and had a wonderful stay. We sure love them and enjoy it despite driving over the mountains with winter looming. After taking some quick family photos for them I handed over the camera did a few clicks of our diminished family crew. Taylor was in respite care as he does not travel well.

Unfortunately the change in altitude sure wrecked some havoc in my insides. There just isn’t any room for gas expansion with the massive tumors so I had a couple days of extended pain. Sorry for the details but this is a reality many probably may not consider. It passes though (pun intended) and all the whole it’s still manageable. I just never like skipping any activities or involvement with the clan.

Upon our return Allison’s friend had a couple of feral kittens that took up residence in their garage. The bathed and cleaned up one that is all white with blue eyes that we just couldn’t resist. Two weeks later she seems twice the size with regular food and rarely not being snuggled. Other than our dog wanting to chew on her like a squeaky toy she’s integrating to the home. She still finds corners and crevices to hide, but she’s acting like a kitten more each day.

Kids and Heather dove right back into school and shortly after I headed down to the Mayo in Phoenix for another round of testing. I knew it wasn’t going to be good despite being on a reduced dosage as my eyes were deep yellow and watering constantly. As expected my bilirubin came back too high and exceeding the max allowed.

My liver is a wimp.

I hung out for about an hour in a treatment room while they consulted with the doc as to what should happen next. They can lower me one more time to just a 1/3 dose, but every reduction of course also reduces the likelihood of keeping my tumors at bay. The PA came back and said they are deviating slightly and keeping me on the 2/3 dose for a shot time and having me hydrate like crazy to see if they can help flush my system. This makes so sense to me because every time I travel out there I tend to drink less than when I’m in my normal routine with water always in my Yeti cup.

So for now I’ve got another couple of weeks to see if this makes a difference. Fingers and toes crossed hoping this can do the trick.

Unfortunately the trial protocol doesn’t allow for a 3 week on 1 week off time of application like some other similar drugs allow. Once it’s on the market perhaps but not under the trial. It seems like after 3 weeks my liver throws in the towel and my symptoms get worse.

So that’s the latest. Working hard to drink and entire lake of water and hope for the best. In the meantime I’m feeling well enough to keep on keeping on with some exercise, project work and of course some wonderful time with family. Tomorrow is that old celebration of another year in the books (aka my birthday). The fam has some activities planned throughout the day to make it a fun one. I couldn’t ask for anything more!

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