Asides

A few weeks ago I turned twenty seven, I had amazing birthday celebrations with friends and a party of nostalgic fun. I secretly planned a friend’s birthday plotting and scheming with the help of his girlfriend family and fellow friends to surprise him with not only a passport to Disneyland, but also a trip with lots of close friends. Whilst at Disneyland, I surprised some more friends with some upgrade assistance, helping to make it one of the most memorable trips to date. A lot of people question how and why I spend so much on a theme park.

To me, Disneyland is a place where everyone is welcome, where it’s okay to be strange and goofy. Where the kid at heart can always play, and it brings me such joy to have others who feel the same way enjoy the magical experience with me. It always cheers me up, and for someone who hears a decent lot of bad news, that’s a great thing to have.

Along that note, I recently had bloodwork and a routine MRI done (to check for liver cancer.) Thankfully I’m cancer free! However, I can’t seem to visit the doc without hearing some kind of depressing news. When looking at the MRI they found abdominal ascites. That’s basically liquid in my belly, in really bad cases, I could actually look pregnant. Woohoo! The trouble with this is twofold, the first being a smaller issue which is I will need to modify my diet to a low to no sodium diet. The second being significantly worse: I am barred from future studies. Ironically my liver cirrhosis is now at such a state, and my additional factors are too serious to risk for studies that would cure the cause of the cirrhosis.

What this means going forward is that I must wait for a few months after FDA approval to go on any treatment; which means waiting up to two years longer for a treatment than I would have to otherwise.

I recently found out the wonder drug I was taking: Incivek, killed two people in Canada and has left thousands with terrible skin problems. I nearly died during the treatment I can only imagine the insanity going on up there with the treatment. Because the problem with this killer drug… it works for most people.

Additionally I am no longer on the watch list for liver transplant, come next month, I will be on the actual transplant list. While I wait for my doctors to figure out what they can do with me, I plan on staying as healthy as a I can. However my newly swollen legs, obnoxiously irritating itching and growing jaundice are definitely cramping my style.

But no matter what happens, I will be participating in the Liver Life Walk this year.

SATURDAY MAY 11TH AT BALBOA PARK/SD ZOO Bright and early at 6:30AM!

 And I urge you to join me, if not for my sake then to raise money to help for the hundreds of thousands who will struggle with liver disease, and for the millions around the world who will die of it, because of lack of access and treatments.

Walk with me, Join my team, or Donate if you can!