Music Heals, Miracles Happen

At the request and urging of many close friends, I am posting A" Go Fund Me " page.  This provides me an opportunity to share my story with you.  On July 27th, the day of  the "Santa Fe Salutes Tom Petty"  concert, I came down with a persistent dry hacking cough which went on relentlessly for well over two and a half months and withstood two rounds of differing antibiotics.  I thought I had exacerbated the cough by standing around in the rain at the concert as I refused to miss performing in this amazing Santa Fe event with so many talented musicians taking part in it.   Not to mention the opportunity to pay my respects to the late, great Tom Petty of whom I had been such a fan of for many years.    In addition to being a Singer/Songwriter/Performer and the originator of the Santa Fe band, The HollyHocks,  I have worked as  an Emergency Room, Burn Unit and Critical Care RN for nearly 23 years. I have worked as a Travel Nurse all over the country and spent the last few years at the Presbyterian Hospital located in Espanola, NM after making Santa Fe, NM my permanent residence about 4 years ago.  This magical place, Santa Fe with a community like no other which has embraced, supported and encouraged me in ways I am overwhelmed and eternally grateful for.  
  
On October 18th, 2018 a bronchoscopy confirmed a non operable Lung Cancer due to high up lymph node involvement.  A few days later, the most  unfortunate news came from an MRI of the brain which showed multiple, scattered cancerous lesions which had migrated from the lung to my entire brain.    Because of the brain involvement, my cancer was diagnosed at Stage IV.   I am not a candidate for radiation therapy at this time  as it would be whole brain radiation because it is so widely spread throughout my brain and whole brain radiation would be both debilitating as well as  leave me with a very poor quality of life and function.  

There was actually a little good news in all of these unexpected findings.  The pathology reports of the lung biopsies showed a unique gene mutation which has been responsive  to a newer targeted  therapy called Tagresso.  This treatment  is a little easier on a person than standard chemo infusions  and initially allows for a better quality of life.  The bad news...this treatment only works for so long and will never "eradicate" the cancer.  The goal is to control any progression until the cancer outsmarts the drug and mutates again making this treatment no longer valid.  The current studies In The New England Journal of Medicine show this drug as giving a person anywhere from 1 year to 2.5 years with no cancer progression.  Without this treatment, I am told I had 1-2 months to live.   I began taking Tagresso on November 1, 21018.

Many people have had legitimate questions and I would like to answer them as well as let you know the involved costs, concerns and obstacles I am facing. The Tagresso Medication costs an average of $14,000 - $15,000 per month and at this time has been  covered by my health insurance for the first few months.  At some point, however,  insurance WILL  stop paying and when this happens,  I will apply for assistance from the pharmaceutical company to hopefully help off set the extraordinary cost of treatment.    Because of my brain involvement,  and the possibility of brain swelling and/or seizures and the impairment of my coordination,  I am unable to operate a motor vehicle and also unable to perform my duties as an RN.   Although I do have health insurance,   I have a high deductible plan which required a $5,000 deductible which was quickly met in October at the time of my initial  testing, workup and diagnosis.  As of January 1, 2018, I will then have to meet a $5000 deductible AGAIN  in order to keep my providers and care consistent.

My biggest hope and goal is to get to MD Anderson in Houston for a 2nd opinion as these folks are the best!  Only being given one option of treatment for such a limited time leaves me determined to get to the experts for their knowledge and opinion as I am determined to beat this!  So, in the mean time, you will find me embracing and enjoying every God given day and moment to the best of my ability.  You will find me writing music, writing a book, recording an album, spending time with friends, family, my dog  and best friend Maggie, and my love Mathiew.   You will also find me working within the community on volunteer projects in order to give back and pay it forward and feel connected to my community.  You will find me working for trade such as helping my friend out at her salon in exchange for hair care services and products.  You will find me focusing on rest, healing, nutrition and the power of positive everything.  

Now that you have the whole story, perhaps it helps you to better understand my situation, prognosis and financial concerns.  The cost of getting to MD Anderson for a second opinion varies and is expected to be anywhere from $5000 to $10,000.  I will update this information as soon as I hear from them regarding the specific costs.   So, this is what I am asking for your help with,  and although I am currently blessed enough to have this fairly normal quality of life at this time, there are many things going on behind the scenes I choose not to bring to the table when in public.  Things like the  skin changes, and painful neuropathies  that make it incredibly uncomfortable for my skin to touch anything from clothes, to bed sheets, mouth sores that make eating and drinking painful and challenging, rashes to my face and skin, stomach issues we wont get into here,  tender fingers making it painful to play guitar or wash dishes and depression and disconnected feelings from the multiple medications I am on.   But, none of this will  stop me from seeing my friends when my weekly Platelet and Neutrophil Counts are good.  And this will NOT stop me from playing and writing music and participating in live performances and  singing my heart out at every opportunity.  This will NOT stop me from laughing with each and every one of you as much as possible.  And this will NOT stop me having hope and believing in miracles.  This will NOT STOP ME FROM LIVING LIFE TO IT's FULLEST POTENTIAL!

I have already been hospitalized once so far for several days due to brain swelling which caused slurred speech and tongue deviation.  I am now on daily meds to prevent siezures and to attempt to control brain swelling.  I hope this has helped to answer your questions and to have a better understanding of my situation.    As a Native American friend once shared with me, it is important to get up every day and give thanks to your God of choice or to recognize your spirituality or to acknowledge and embrace the Sun.  Whatever it is that inspires you!   To count our many blessings and to say out loud  "Today is a good day to live, and Today is a good day to die. ...I choose to Live today!"  And I couldnt agree more! Here's to life!!!  Please feel free to pass this along and share!  Thank you, from my heart, to yours.