Tuesday, November 27, 2012

LIVE people!

When my journey with melanoma began, I was introduced to a group of people who call themselves Bad Ass Melanoma Warriors.  I am proud to say I am part of this group.  These people are strong, compassionate and intelligent, and they rally around each other to give (or get) support for whatever might be happening whether it's anxiety about upcoming scans, or help with treatment decisions, or hearing bad news.  We are a tightly knit community, and our community heard bad news last night.  One of our youngest warriors, Jillian, learned that her treatment is not working.  The doctors say there is nothing else they can do.  She's 23 for God's sake.  23!  

I have to tell you that I do not know this family personally, but their story is etched on my heart forever.  From what I have learned about Jillian through her mom's blog "Jillian's Journey with Melanoma: A Mother's Story," she is a fighter, is outgoing, funloving, loves the outdoors and her family, and is beautiful and that's just for starters.

Here is a link to her mom's blog:  http://jilliansjourneywithmelanoma.blogspot.com/2012/10/the-quest.html 

You know, it's bad enough having melanoma yourself, but to be the mother of a child who has it...well, I just can't fathom the pain.  As parents, we always want to do all we can to take away any pain our child is in, so to watch your child, a daughter in this case, struggle with Stage IV melanoma has to be the toughest thing in the world.  

So, as Jillian's mom suggested last night, I'm going to hug my kids and not worry about the things that aren't important.  Life is short.  Far too short.  And we all need to get out there and LIVE!  I hope you will too.

Tuesday, November 13, 2012

Stage IV

I realized this morning that I've been avoiding my little blog.  Why?  It's painful...and scary.  Sharing information with you means that I have to face it and deal with it myself, and frankly there are 1,001 things I'd rather do.

In June, I was hospitalized with pancreatitis for five days.  That hospitalization likely saved my life.  On one of those five days I had an MRCP (a specialized MRI of the abdomen).  After my belly calmed down and I got to go home, I scheduled a 3 month follow-up MRCP at the request of my doc for September.  That MRCP showed a mass in the wall of my gallbladder.  A PET scan followed a week or so later that confirmed a mass "highly suspicious for malignancy."  Whether it was melanoma rearing it's ugly head, or a new primary gallbladder cancer was really the only question.  BUT, without the need for a follow-up MRCP in the first place, the mass (whatever it was) probably wouldn't have been discovered until much later, and that could have been bad.  Really really bad.  

Anyway...it was melanoma.  Sigh.  I made it a little over a year without metastasis.  Grateful for that time.  And now, technically, I'm NED (no evidence of disease) again, but I'm also now Stage IV because I had metastasis to an organ.  I had surgery on November 2 to laparoscopically remove my gallbladder and lobe 4b of my liver (thank you very much Dr. Baker).  Thankfully, my liver was clean with no evidence of invasion of mel cells into the liver tissue.  I have six incisions that are healing pretty well, and I'm feeling stronger and having less pain every day.  

I've been spending some time on clinicaltrials.gov looking for trials I might be eligible for, and reading a really comprehensive book written for melanoma patients by NCCN (thanks Lindsay Hladnik).  Up to now I've been in watch and wait mode.  Not anymore.  I'm in a fight for my life, and I'm going to give it every ounce of energy I have; which leads me to why I started this blog in the first place.  Without all of the damage I did to my skin by tanning (outside and in tanning beds), none of the above would likely have happened.  NONE of it.  So please...I beg you...wear sunscreen every single day (yes, even in the winter), and for God's sake, please don't get into one of those stupid tanning beds, ever.