Thursday, November 12, 2015

Merde! Again. With love to friends and family of Lori Murdock...

When you swim in melanoma soup for as long as I have...and as meet some incredible people.  I just keep wondering why we have to lose so many.  I first mentioned Lori here:
A beautiful lady with eloquent though heartbreaking words

Lori was diagnosed with melanoma in 2009.  She, like myself and so many others, faced a horrible prognosis with no available melanoma treatments other than standard chemo, like Dacarbazine (DTIC), or the old school immunotherapies of  interferon or IL-2.  She researched and fought for clinical trial options.  Just after being diagnosed as Stage IV, ipilimumab/Yervoy was licensed in the UK, though patients had to try dacarbazine first.  She did.  Predictably, DTIC made her very ill and had no positive effects on her melanoma.  However, she was able to advance to ipi.  She tolerated ipi well and her tumors responded.  Yet, bad news and melanoma growth eventually returned and she was back to the search for treatment.  Her plea for a repeated round of ipi was denied.  Luckily, she found a nivo/Opdivo trial.  Unfortunately, it randomized participants to nivo OR dacarbazine.  Dacarbazine was the lot she drew.  She declined further participation.  Traumatizing as that was, she continued her fight for participation in another trial and reasonable trial protocols....and not just for herself...but for others:
In 2013 she sailed around the UK to spread melanoma awareness and raise money for cancer patients

Yet, her own struggles were far from over:
Asks strangers donate to help raise money to secure her own cancer treatment
Though she had been accepted in a TIL program, she was not allowed access to the treatment without 70,000 euro's in hand.  Folks helped her out, though why on earth this is the way so many folks across the globe are forced to find access to deserved medical care, I'll never know.
Her "go fund me" medical fundraiser - help lori murdock live

By June, having had a melanoma riddled kidney removed and those tumor cells prepped to grow TIL cells, there was good news - the needed cells for TIL treatment had grown.  I am not sure exactly what happened after that....but today....Lori Murdock left this earth due to melanoma.

This world has lost yet another amazing human to melanoma.  Ironically, to me....I have encountered a recent spate of:  'Poor me'...'I am so stressed'....'I think I have PTSD after all I have been through' melanoma patients on various boards and forums...and I fear I am not handling it very well.  I mean...up until this moment...I have done/said absolutely nothing...other than think about those proffered sentiments in my own strange brain.

Of course, everyone has the right to say what they like.  Additionally, I feel strongly that all patients deserve a safe place to speak and caring people to listen to what they are experiencing....whatever it may be.  Yet, really?  Those of us lucky enough to attain treatment and then actually respond positively to think you are stressed?  That treatment made you cranky????  Yes, being told you have melanoma is frightening, gut wrenching, horrible.  To have to endure pain and infusion after infusion, surgeries, time consuming crap finding, understanding and working out care, the anxiety of paying for that care, seeing the suffering on the faces of those who care about much....hellish.  But, we are here.  Our cars still break down.  Our faucets still leak.  Work still has moments that suck.  Surgical incision sites, though healed, never feel the same.  Yes, we are tired and stressed and cranky. are lots of other Syria, in refugee camps, in hospitals, in hospice, in melanoma never-land where treatments are not attainable....or are not working.  So....seriously?  Do we need to focus on our stress?  Or do we need to choose to be thankful that we are here at all?  Miraculously having been given another go at all of this?  I bet I know which Lori Murdock would be choosing tonight.

May you rest in peace, Lori.  You have been a beacon of light for us all. - c

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